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My story,
As told by Eye Surgeries

Jennie Logsdon Martin
Marfan Syndrome

The greatest mistake in the treatment of diseases is that there are physicians for the body and physicians for the soul, although the two cannot be separated. ~Plato

A doctor must work eighteen hours a day and seven days a week. If you cannot console yourself to this, get out of the profession. ~Martin H. Fischer

Let the young know they will never find a more interesting, more instructive book than the patient himself. ~Giorgio Baglivi

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Wow! I just did a google on "Casey Eye Institute" and this came up fourth or so.
I just wanted to impress upon anyone stumbling here that this is not a complaint of Casey Eye Institute in any way. It is the story of the frustration over marfan syndrome and the resulting and constant battle for my vision.
It also goes into details of frustrations with physicians and, most probably, their frustrations over dealing with the fragile tissues of marfan syndrome!
Anyhow, if this isn't what you were looking for, Google on!

I also want to thank all of the doctors, and my Heavenly Father who guides them. They both have never given up on my eyes.

Jen

All my eye surgeries.. a continuing drama...

April 14th, 2004 Eye update

I can't begin to tell you the huge disappointment I felt, at my doctor's appointment, today. Wait. Yes, I can begin to tell you. And I will.
Today, I will begin to unravel a story that I have been withholding. I will tell it, knowing full well that I will be burning some bridges that I would have probably used for crossing, in the future. I will do this, because I want to save someone else from what I have had to go through. I want people to learn what goes on, and I want it to change! I want it to change so badly, that I don't know where in Portland I will go to have my eyes treated, after I tell my story.
Today, I walked out on the good doctor. I spent 5 minutes in the office, and I walked out. He just sat there, as I quietly closed the door, behind me.
Near tears, I stopped by my second doctor, to let them know I was canceling my appointment with there, also. There was no point in keeping it, now.
After my last failed surgery, I spent nearly two years trying to decide what to do to fix things. I had traded one dislocated lens for another, and was told simply that the surgery went as planned. I had no clue why I couldn't see, and no one explained it to me. The surgery worked. "Goodbye, Jennie. Call in the next patient."
I had to do something. I had to decide what doctor I trusted, what type of surgery would help to clear up the duplicate images and the star affect that I see. Do you know that my eyesight shows that I have 15 or more fingers on one hand? Wow! That is a successful surgery!
It took nearly two years to build up the trust and conquer the fear. I looked for help, everywhere. I posted for help in deciding, about 6 months ago, on the bulletin board's Life in General forum. Minutes turned to hours, and hours to days, googling on ifish, trying to understand what had happened to me, with my surgery. Trying to convince the doctor it wasn't right. Why wouldn't my eye surgeon just tell me?
I read. I listened. I questioned. I researched, and then, finally, I called my new Doctor a month ago, and told him my decision.
I wanted to have Dr. Macaluso do my surgery.
A year ago, a very kind doctor at Casey Eye was recommended to me by Dr. Robertson, then, head of Casey Eye Institute, and the surgeon who had performed all of my eye surgeries.
Dr. Macaluso took the time to listen to my concerns, and learn about the fragile nature of my eyes. He sat me down at a computer, and carefully explained a procedure that would not be invasive, nor as dangerous as some other options. He told me that he had never operated on a marfan eye. This concerned me, but in the two years I had to think about it, I decided to go with it. I don't have many choices.
Two years later, after Dr. Robertson retired his retinal position, I found Dr. Stout. This was Dr. Robertson's replacement. I found him kind, calm, and attentive. He listened as I told him Dr. Robertson's suggestion of having Dr. Macaluso make a small corneal incision to try and lift my lens into place. If that didn't work, then they would simply take the lens implant, out.
It was two weeks ago, that my appointment was to be, with both doctors, as a team. Two days prior, they called to say Macaluso was to be out of town, and cancelled. I rescheduled, a bit flustered, but none the less, pressing on.
Today, I arrived at my appointment. For some reason, they were not scheduled together, as we had planned. Oh well. Doctor's know best. I went first, to Dr. Macaluso.
You would not believe my anticipation. My determination to do this was strong and sure. Finally! I had resolve! By golly, I was going to make an appointment, and do it! I was prepared! My thinking was that it would be done, really soon! They usually are! I was excited!
I sat down and visited with the nurse. Told her of my plans, and she jotted down notes.
Dr. Macaluso arrived on scene. He asked, "How are you?"
I said, "A little less frightened then before."
The second thing out of his mouth stifled me into choked silence.
"Now, you know that I am leaving in a month, and not accepting any more surgery patients."
....
....
"HUH?!? What am I doing here, then? Why did I take a day off, drive two hours, to Portland???"
After he apologized a little, he continued. I was still in nearly speechless shock.
"Now, let's talk about what is wrong. What is really bothering you is the duplicate images, right?"
I was still speechless. He didn't know? He didn't review his notes?
He continued, saying that he could implant a lens with a painted iris in my eye.
What? We had discussed this earlier, and had decided it wasn't an option.
The good doctor seemed to have no clue. It seemed he did not remember me. It appeared he hadn't reviewed his notes, nor spoken with Dr. Stout about what we had talked about.
I simply stopped him, and said, "It makes no sense for me to be here. You do not appear to remember me, and you will not be performing my surgery. This is a waste of time."
I walked out while he rustled through his notes.
On the way home, my mind went through the long ordeal of my eye surgery histories. The seeming deceit, or was it perhaps the fear of lawsuits that kept them from freely giving me factual information? After my surgery, they told me that everything went as planned, and really downplayed what did not. I was kept clueless, and was forced to figure out what had gone wrong in my surgery, from my best friend, Google, and a non doctor, who could clearly see the problem, and let me know about it, although he asked to remain anonymous. I will respect that. His unprofessional diagnosis was confirmed by a real optho, later, but only after I knew to ask the questions that he had brought to my attention.
On my drive home, I decided that it is time to write an honest account of my experiences at the Casey Eye Institute, as I know it.
I will do this because I believe it will help some folks to know what direct questions to ask. Perhaps it will help me to understand, also, as I research why doctors choose to keep patients from the truth.
I firmly believe that the eye professionals at Casey Eye Institute are some of the medical best, and I do know that my eyes are probably some of the most difficult that they will ever run into.
However, in my experience, I believe that their patient relations are lacking grossly.
Not telling me, before I drove 2 hours to Casey Eye Institute, from home, is only a small insult, compared to the tangled web that I will unweave in the coming months.
It won't be my daily column. It will be separate. But, it will be published. It will be published for the marfan community, for ifish, for the ombudsman at Casey Eye Institute, and for any media that wishes to publish it.
I believe it to be a very interesting and extremely insulting and disrespectful display of medical "profession."
After my tears of frustration began to ease, and the splashing rain subsided, I drove the beautiful winding riverside road, home to the coast. The light from the late afternoon sun warmed the pavement, and oceans of steam rolled and swooshed like oil and water, dancing around my car.
The thought of releasing and remembering, and recounting my story, gave me relief.
Man, oh man, do I have a story!
The wet leaves danced around me in the light and caused my eyes to squint. I was enveloped into the raucous overgrowth of spring green, everywhere around me.
Despite all of the frustrations over my experience, by golly, I can see enough to see! And what a beautiful world there is, to see! I decided that God really does know best, and everything happens for a reason. There is a good doctor out there, and I will find him or her. Somehow, this was just not meant to be.

CHAPTER ONE

It was in July of 1994, when my husband, at the time, decided we weren't good, anymore. Out of the blue, it seemed, he had found someone else.
Someone better.
Someone more exciting.
Someone blond... I can laugh at this, now.... almost! :)
I returned from a family trip with the kids, to Diamond Lake. He had to stay home to work, he said.
When I returned home, I began to sort out clothes, and thought I'd make a nice dinner for him, and get everything put away. I was doing laundry, and noticed all of his nice clothes were out, like he had been going out. His leather jacket, his nice slacks. I called him at work. "Have you been going out?" I asked.
His answer? "Yes, with a woman. I want a divorce." It really was that blunt and unexpected.
He quickly moved out, leaving me with everything, and nothing, all at the same time.
I had no money to pay rent, and after many years playing Mother at home, not working, I was thrown into the work force. The only available place to work was the Astoria Country Club, where I could play the piano for dinners, and banquets. This is where my husband, and his new girlfriend worked also. I had no choice. I worked there, too. It wasn't easy! I'll never forget a very sweet woman who worked there, also. She was of Asian decent, and on my break she came up to me and said, "Oh! You very strong woman to work, here!" Those words helped me so much!
We were officially divorced, in October, of 1994.
During that time, I was busy with Andrew's health problems associated with marfan syndrome. I knew that Andrew couldn't see very well, but I was learning how to deal with the fact that he was actually legally blind. I was back and fourth to the eye doctor, in Lake Oswego, Dr. Goodman. We tried glasses. We tried contacts, but Andrew's lens was simply in the wrong place. When he shook, or turned his head, his lenses, hanging by broken muscles, would move and shimmer around. You could actually see them flutter! It was sad to see, but somehow oddly beautiful, to see the light reflect off his lens, in a butterfly flutter. So, one minute he would be seeing far sighted, and the next, near sighted. Without council or family support, the decision weighed heavily on me to do surgery on his eye, or leave well enough, alone. If the surgery was not successful, the little vision Andrew did have, in this eye, could be lost. totally. How I wished he were old enough to have an opinion!
It's actually a good thing that I was keeping busy. I volunteered faithfully at the kid's school. In fact, I almost lived there! I played for church. I ran back and fourth to Portland, for Andrew and my medical appointments, and to visit my Mother, who was dying of cancer.
All around me, my extended family life was falling apart. My husband had left. My Mother, my all support, and my foundation, was slowly dying. In January of the next year, three months after my divorce, my Grandmother passed away. Three weeks after that, my Mother let go, too. I was reeling. I felt totally abandoned. I had lost 40 pounds due to stress! (Not a recommended diet!)
One thing I did do, that I'll never forget... I received a tax refund, and decided to do something I had always wanted to do! Float the North Fork of the Nehalem. I bought an STS magazine, found a guide, Milton Fisher, called him up and booked a trip! Now, that was a good memory, and it essentially kicked off ifish.net!
The community of Warrenton much surprised our family, and sent us, all expenses paid, to Disneyland! Can you believe that? I still can't!! But I am eternally grateful for these memories.
Weaving through this time, weighed heavily the decision on whether to place my trust in the hands of Doctor Robertson, Casey Eye Institute's top surgeon. He expressed confidence in sewing a new lens in Andrew's eye. I prayed about it for months! Finally, in August of the same year, I made a decision to do just that.
Dr. Roberston was kind. He always seemed a bit distant, however, and if I asked questions, I always felt a little looked down upon. I am one who wants to totally understand the process, and I will research till my dying days to find out what I want to understand. I quickly learned that most of the information that I would find, would not come from the doctors, but from the marfan community, or the local library. Knowing that there was no way I could educate myself to the point of a doctorate in Ophthalmology, I still tried to learn everything I could. I read. I studied. I was all ears.
On August 14, 1995, I rose at 4:00 in the morning. I dressed David and Andrew, then ages 7, and 8, and took off for the Casey Eye Institute for Andrew's vitrectomy and lens implant. I dropped David off at my sister Linda's in Lake Oswego, and headed to the operating room at Casey.
My Dad, and my sister Teri, met me at the hospital, to offer support as we waited.
I felt for Andrew. This was the fourth surgery he had experienced, in his life, so far. There had been many other ER trips to the hospital, also. There would be many more! To this day, and I kid you not, he panics at the smell of anything antiseptic.
The surgery went well! I gathered him up, and the nurse helped him into my light blue Ford station wagon. The day was hot, and I drove off to pick up David, who was swimming with my sister's family, at the Lake Oswego swimming easement. I'll never forget Andrew, disheveled, but sleeping soundly in the back, while I visited with my sister. I was insanely calm, as David, giggly wet, and unaware, climbed into the car. I chatted through the window to my sister. She kept nervously glancing at Andrew, all patched up in band aids, while we visited. Finally, she said, "Uh... Jennie? Don't you think you should take Andrew somewhere to rest? He looks awful!" I think I was just so glad to be past stage one, that I wasn't thinking clearly!
Off we drove to my Dad's house in Canby. We had to be back to the hospital the next day, to remove the bandage.
All I remember, from that point on, is the office visit the next day. Andrew's bandage was removed, and they tested his sight. I remember my tears of joy, and Dr. Robertson's joy, also! The good doctor, now escalating rapidly to near "God" status, to me, skipping down the hall, joyfully exclaiming "Andrew is seeing 20/40!!!"
The surgery was a success! I felt wonderful. I had made a decision, and it was a good one! Praise God! Praise Dr. Robertson! Life is good!
Following, were many difficult days of giving a young child eye drops, who absolutely and fiercely resisted them, 4 times a day! The tears, the struggles, the fear, it was all worth it!
I expected Andrew to see things, immediately. However, I was mistaken. His eye sight may have been much improved, but for eight years, Andrew's brain had not been asked to process visual information. Thus, he saw very little, still. His brain had not had time to "learn" to see, to "learn" to process the information.
I expected miracles! I expected him to look around, and see! He did not, for many, many days. I was let down.
It was not until the next month, that I began noticing Andrew's awareness of his new sight. We were at Black Butte Ranch, with my family, when it became crystal clear to me that his surgery was indeed, a success. All of his young cousins were outside, playing in the hot tub, after the sun had gone down.
Out of the night sky, I heard what I thought was a terrifying scream from Andrew.
"MOMMMMMM!" Andrew yelled to me. I was startled. He sounded frightened!
I quickly got up, and went outside to see what the problem was.
There he sat, shivering and goose pimpled in the cool night, on the edge of the hot tub. He was pointing, and staring into the sky.
"THERE ARE STARS IN THE SKY!" He exclaimed to me, pointing his long, thin, marfan finger, and holding it steady toward the sky.
As I write this, tears fall down my cheek, thanking God and thanking Dr. Robertson for Andrew's gift of site. Andrew had only seen stars in children's books, previous to then.
To this day, Andrew has little 'glow in the dark' plastic stars on his ceiling. I placed them there, and I will not be the one to take them down.

CHAPTER TWO

I was so impressed with Andrew's surgery, and delighted in the discoveries that he was making. In the months after his surgery, he began to point out ships in the bay, where we lived, in Astoria. He hadn't seen those, before. I'll never forget taking him to the hatchery on the North fork of the Nehalem. On the return trip, we took 101 back, across Neahkahnie mountain. There were so many things that I had taken for granted, and the beauty of life, brought to my attention, through Andrew's new sight. As we traveled, high over the ocean, he stared, and asked, "WHAT IS THAT?" We turned into one of the many turnouts, as he marveled. "That's the ocean, Andrew."
"Wow!" He kept repeating. "Wow!" He had been on the beach, but you don't get a feel for the enormity, I don't suppose, until you've seen it from high up. "It goes on, forever, doesn't it, Andrew?" Now, every time I drive that drive, I'm delighted to see what Andrew saw, for the first time. "Wow!"
It wasn't until early 1996, that I considered having the same surgery done. One of my eyes, was failing badly. Not that I ever saw great in the first place... But, my right eye was legally blind. I used it for an aid to my other eye, but if I closed my good eye, and tried to make things out with it, I could not. "What good is this?" I'd ask myself. It had come on so gradually, that I hadn't noticed, really.
During my marriage, I had limited health insurance. When I divorced, I had none. I learned that with my limited income, I could get Oregon Health Plan. I applied, and was accepted. I remember feeling really weird about it, and didn't like the idea of being on state care. My case worker, (also a student's Mother, who had noticed me straining to see) however, convinced me. She said, "Jennie! Your family is specifically what this plan was designed for! Do you know how many people use this system, that should not? You deserve this!" I did not like walking into that office. But, I swallowed my pride, and remember feeling tears well up, as I walked into the Adult and Family services office. They offered me cash, and food stamps and all kinds of things. I denied needing anything but health insurance.
I was having increasing difficulty, while teaching piano lessons. In the time after my husband left, I took on piano students, to supplement my playing income. I could not read my own notes. I could not see the music, to point them out to my students. I also noticed that I could not read music, without leaning over. This resulted in really sore muscles in my back, and shoulders. After consult with many doctors, after attending pain clinics, and after failing to find a cure, I was forced to quit teaching. I was canceling more lessons than I taught. I quit playing for a living. I couldn't drive at night, nor could I consistently find rides. I needed to haul my electric piano, and I couldn't find a taxi who could fit it in the back, nor anyone who wanted to lift it for me! I applied for disability, and was awarded the full benefit, without aid of an attorney, in 1996.
Most people, I have heard, collapse and fail, once on disability. Contrary to that, I found that it enabled me to be a better, more successful person. Vocational rehabilitation enabled me to learn to use a computer, and work at my own pace. I remember one very kind Mother, who actually gave me a massage, while I taught her daughter! Now that was awesome!
My disability insurance enabled me to return to teaching again, on a part time basis. The students that I selected understood my limitations, and worked with me.
Shortly after my divorce, I had looked into buying my own health insurance. What a joke! Somehow, they lump people with marfan syndrome into the same group that people with Aids are in! Or, they did me, anyhow! I remember a doctor that I had consulted with, in my late teens. He had wrongly advised me that I would not live past 35. Was that in my records somewhere that the insurance people read? The cost for my health insurance would near 2000 a month?!?! What? Now, the facts are said to be that marfan people may live to be 70, with good follow up care, and if taking beta blockers. I don't take beta blockers, because they made me feel tired and depressed. I'd rather live a short life, happy, then feel like that! Even so, I felt my health insurance costs were out of line.
I accepted the Oregon Health Plan and medicare, through disability, and went to see Dr. Robertson, in 1996.
I wanted to see like Andrew!!! I had a ticket to surgery!
It took several appointments to figure out if I wanted to proceed. There were no guarantees, like with Andrew's surgery. I knew that well. I had to decide on the risks, the same as I had with Andrew. But, I kept telling myself, I was legally blind, anyway... why not?
One of the risks, however, with me, was that since my brain had totally developed without learning to use better vision then what I had, it may not be capable of ever learning to use better vision. Somehow I had faith in my brain. I had faith that I could learn to use it. To this day, I will challenge the assumption that the brain cannot learn to use better vision. I have been through so many, many different vision schematics, and I have adapted. I don't know if my brain is working to it's fullest ability, but I know that I can adapt, so that it seems normal, to me. This is very hard to explain! :) The brain is an amazing organ, I'll tell you! Even now, as I see duplicate images, it seems. well, normal, and if I ever get it "fixed" I am sure that at first, it won't seem right! It takes time for our brains to adapt. Probably more time than if I was 5 years old. But, fear not! I have faith in it happening!
I finally decided to put my full trust in Dr. Robertson. He was an eye surgeon "God" to me, after what he did, for my beloved son. He gave Andrew the gift of sight, and no matter what, I am forever grateful for the gift that he gave to my son.
I scheduled my first eye surgery for October 13th, 1997. I looked forward to it with great anticipation. I was so excited! My expectations were pie in the sky high! I wanted to see new oceans, and new ships, and new stars! My life was new. I was healing from my traumatic losses of my Mother, my Grandmother, and my husband, and I wanted new eyesight to add to the discoveries I was making in my new life!

CHAPTER THREE

Remember the days when you first discovered the internet? Or, perhaps, first learned to make web pages? Wow! I can make stars and stripes, colors everywhere! ...and things move! What a great new type of media!
I wasn't playing the piano for pay, anymore, and I wasn't teaching. A very close friend, Gary Winters, bought a computer and I learned to use it. Here is my very first web page! I can't even get into that to edit it, anymore. I can't remember the password, and they won't give it to me, without paying, or something. I forget, but I remember trying, and there was no way I could get in! I abandoned this page in 1998, I believe, after my surgery.
I was heavy into writing midi music, at that time, and wrote a piece for each river that I loved. They are stored away on floppy files, somewhere. I also sold a piece to a film making company. Fun! I thought that might be a good way to go, to make money. I was wrong. It just didn't go. I was frantically trying to figure out what to do to support myself, again. I was struggling with the fact that I was disabled, and fighting tooth and nail to lose that distinction.
The first step, I thought, was to try and get my eyesight back.
On October 13th, 1997, I went into surgery to do just that.
I had the support of my friend, Gary. He drove the kids and I to the hospital, and waited for me to get out. This started the tradition of wonderful chocolate chip cookies at the Double Tree Inn, downtown, post surgeries. They hand them out, when you stay at their motels.
My memory is foggy about this surgery, and I wished I would have written down my thoughts. I've been working hard to try and recall details, but they are scarce.
The night before surgery, they told me of a shot I would have to have, right next to my eye ball! I did NOT need to know this! It proved to be the most painful part of my surgery, and kept me up the night prior, worrying! Youch! A shot of stinging anesthesia to my eye! The needle was huge! I still have a small mark where the needle went in.
I recall, during surgery that the anesthesiologist told me, "Jennie, I am your bartender. If you feel pain, please tell me you want another drink." I giggled.
They don't put you totally out, when they do eye surgery. I guess you need to be semi awake, and it is because they don't want your eyeball going into REM. Is that correct? I think so, but I can't be certain.
The surgery to be performed on me, was to remove the vitreous fluid, and my lens, completely, from my eye. The vitreous is a normally clear, gel-like substance that fills the center of the eye. It makes up approximately 2/3 of the eye's volume, giving it form and shape before birth. Certain problems affecting the back of the eye may require a vitrectomy, or surgical removal of the vitreous. After a vitrectomy, the vitreous is replaced as the eye secretes aqueous and nutritive fluids.
Then, they would sew in a new plastic lens. This sounds much like a cataract surgery, but with marfan patients, all of the muscles that hold in a lens, are broken. This was my problem in the first place. My muscles had broken, or were already broken at birth, and my lens was floating freely, loose, in my eyeball. So, they have to sew the lens to my outer eyeball, with monofilament. (Cool, huh?) It's much harder to get it to stay well, and is a very, very intricate surgery.
Funny, I remember Andrew, in a doctors appointment, once. They have a plastic eyeball, about the size of a bowling ball, in their office. This is to demonstrate to patients, the workings and the parts of a normal eyeball. It is like a puzzle, with the retina, the lens, the cornea, all different pieces, that fit together, neatly. Once, when the doctor came in, Andrew grabbed the eyeball, and showed it to the doctor. He said, "This is a normal eyeball." Then, he dumped all of the pieces out, put them back inside the eyeball, random, and loose, and shook it up. It clattered terribly, as he shook it. "This," he said, "Is an eyeball on marfans." We all laughed. How true!
I have trouble being in any one position for extended periods. I always have. Laying on my back, during surgery, I recall my back hurting, and I kept moving. The doctors were performing surgery on my eye, and they sounded frustrated, "Jennie! Hold still! We are operating on your eye!" I didn't care. I was half goofy, and I hurt! So, I kept moving and struggling. The "bar tender" saw that I was hurting, and must have given me another "drink." I remember nothing after that.
I remember the cookies, after though!... I recall the meal that we had at the motel, the evening of the surgery. I recall having a terrible time when the anesthetic was wearing off. I was terribly panicky, and paced the room. It was the most awful feeling!
The next morning, I had the bandages removed at Casey Eye Institute. It was fairly uneventful, and the surgery went well. However, I was unimpressed, at the time, with my vision. It takes a while for everything to settle down, and things were still fairly swollen at the surgery site.
My sight, as the wounds healed, proved amazing! The doctor estimated my new vision to be 20/40!!!!
It is difficult to learn to use new sight. My brain got so tired, at times, I just closed my eyes. So much new information was being processed!
I recall it taking forever to learn where the ground was. I had trouble walking with my new vision, because all perspective on sight had changed. I ran into walls, but in so doing, I'd stop and stare at them! The patterns on things were simply amazing! I had no idea the texture of wall paper! The texture of wood paneling! When I'd fall down, someone would reactively try to help me up. No! I wanted to stay there, and examine the grass! Wow! It was simply amazing!
My eye was terribly bruised for a long time, and I remember people staring at me. As a joke, once, in Costco, I couldn't help it... Gary was with me, and I turned to him and said, "If you EVER do this to me again, I will report you!" I thought it was so funny! He.. did not see the humor, and thinking back, I guess I understand. It still makes me laugh, though!
All of the sudden, my house was filthy! I hadn't seen the dirt before. I called my sister, once, while cleaning. She said, jokingly, "Oh! Getting your house cleaned up to 20/40?" I laughed, and still giggle at that. It felt like a miracle to me! She also told me of a time, when I was in college. I guess I had come home to attend a family function. She looked at me, and told my Mother, "Mom! Jennie's pants are dirty!" I guess my Mom turned to her and said, "That's OK. She can't tell!" I couldn't! And, now that I look back at my life, I wonder how many events I attended, with dirty clothes. Horrors! Did I play for the President of the United States with dirty clothes?
What I thought was going to be one surgery, and then "done," as Andrew's experience had demonstrated, was quite different for me. My medical appointments went on and on and on. With Marfan Syndrome patients, tissue is randomly strong, and randomly very weak. You can point here, or here, and the tissue will be fine, but over here, perhaps, not. You never know where the failing tissue will be. That is why people with marfan can sometimes get their ears pierced, and they won't need to worry about the hole closing up. The tissue there just might never heal! Thus, my surgery left a hole in my eye, that would not heal. They had hit a spot where the tissue would not knit together. This left my eye ball exposed to inner infection. I guess people that have pressure problems in their eye actually have a surgery performed called a "bleb". This is an open hole to relieve eye pressure. Although they did not mean to, nor did I need one, I was left with a perfect "bleb" in my eye. This was not good, they said, and must be fixed. I was referred to Dr. Samples, their glaucoma specialist. This problem sent me to Portland, many, many times in the coming weeks and months. I had weekly, if not bi weekly doctors appointments, to try and fix the hole in my eye.
In those weeks and months, I experienced more pain than I am willing to fully remember. Treatments for this bleb included weekly visits to drop acid into my eye with a tiny stick. This was an experiment to see if the caustic action of the acid would cause my eye tissue to scar over. I will write about this period, in my next chapter.
I made it through this period, I believe, because of the absolute thrill and victory of being able to see better! I was learning to walk again! I saw things I had never seen before! Although the images were very small, the intricacy and brilliance of a new lens brought much joy to my life.
Two months after surgery, during the Christmas Holidays, Costco had the toy section alive and lit up with lights. I was in heaven! I was processing most of the chaos of lights and merriment. I picked up a Barbie Doll, adorned in rhinestones and glitter. It was the absolute most gorgeous thing I had ever, ever experienced. I held it up to the light, and marveled for far too long. I'm sure people were staring, as I rotated the doll in the lights, and exclaimed my delight, most vocally. "OHHHH! AHHHHH!!!! LOOK!" I said to my kids, and no one in particular. I think Andrew understood, but David, in all of his young wisdom, turned to me, and said, "Lady, I don't know you."

CHAPTER FOUR

"This will sting a little."

Dr. Samples is an amazing doctor. He is so sought after, that often his waiting room will be overflowing. Honest to God, I waited four hours, one day, to see him. On that occasion, I had finally had it, and I was going to say something, darnit. My time is valuable, too, right? This was after many, many visits to Dr. Samples, (waiting in the waiting room...) I realized his value to the medical community, and to the patients that he treated. My name was finally called. I walked in, sat down, and said, "Dr. Samples, I have been waiting for four hours to see you." He looked at me, casually, and said, "You could go see someone else."
I was stifled. "I can't!" I stuttered. "Why not?" He asked.
"Because you are the only, the best, the..." It was true, and it hit home. He thanked me for the compliment.
Dr. Samples is a doctor that specialized in things that not every doctor specializes in. There just aren't very many with his knowledge of glaucoma. He encouraged me to encourage other doctors to specialize in this field.
From what I have seen, Dr. Samples must have no personal life. He has treated me as early as 7 in the morning, and as late as 8:00 PM at night. Dr. Samples, I believe, lives at his office. I wonder where he hides his wife and kids? In patient room 211? He is overworked, under appreciated, and very valuable to our community. He is a dedicated physician, and we need more like him.
For all of the good that I think of him, I still get frustrated over the brevity of explanations that he gives about the patient's condition. It seems required that you go in, put your full trust in him, and don't ask too many questions. I find most ophthalmologists to be this way. Some, more than others, but Dr. Samples, and Dr. Robertson are two that, should you ask a question, be prepared! Either you will be cut off, the answer will be either too scientific to understand, or too brief to digest!
I took notes of questions to take in, before the visit, took notes during the visit, to go "Google" for deciphering, when I got home, and took notes while searching the internet, so that I could put the pieces together. I am still, to this day, not certain of the events that took place, or the reasons why I was having some treatments.
It was clear that I would not be "held by the hanny" at Casey Eye Institute. The medical treatment you get is top notch. But they aren't going to educate you, and helping you understand, is not a priority, or even an option.
This is my understanding of why they have difficulties with patient relations:
1. They are backed up with patient demand.
2. The insurance industry has so complicated things, and put so much pressure on the office staff, that their time is spent dealing with the insurance, rather than spending their energy on the patient.
3. They have to be so careful of lawsuits, that they just get in there, do their job, and try to be as silent as possible. Chit chat leads to problems, I'm sure.

Anyhow... Despite it all, I admired and trusted Dr. Samples, and still do.
He was the doctor who was dedicated to getting my eye healed, where an incision had left an open "bleb" or wound that would not heal over.

The first visits, I felt lost and tossed around. I had no primary eye doctor. I had gone from eye doctor, to eye doctor, to eye doctor, and I remembered asking him, "Will you please be my main doctor?" He said yes! I immediately adopted him! I had a personal doctor!
The first few visits were just to check my pressures, make sure my eye drops were the right ones, and to watch if my bleb would heal on it's own.
Darnit, it just wouldn't. It was healing around the edges, to form a healed bleb.
We discussed options. More surgery? Because no one wanted to go in there again, we decided to try dropping a bit of acid onto my eye, off a tiny stick. This, in theory, would aggravate the tissue into scarring, and healing over the hole. It sounded awful! I was tense, the entire week, before my first treatment. Acid in my eye? Are you joking? Eyes are sensitive, and the thought of caustic acid made me quiver!
When we decided this was the best option, he asked me to come back that night for the first go around.
I arrived, at 7:00 PM. The office was quiet. No waiting line! A student was on hand, to watch.
Here we go, again, I thought. Memories of when I was a child, and what seemed like 100 medical students standing in line, waiting to see the little girl with marfan syndrome. There are very few times that I visit Casey Eye, (or OHSU in general) that a medical student isn't taught what a marfan eye looks like, and how it responds to treatment. It is a teaching hospital, and I am glad to be able to help to educate the medical profession about the intricacies of the marfan syndrome.
My eye was first fitted with a speculum. I'll tell you, that was painful and awkward, in itself. It is a wire cage that is rough, and cold, and holds your eye wide open, against all of it's will, to blink. I know of some marfan women who won't allow docs to use those. They stretch out your eye into positions that were not meant to be. With marfan tissue, once you stretch it out, it is difficult, if not impossible, for it to go back into shape. If I have wrinkles around my eyes, I know what to devote them to. They are not smile lines. I know that, for sure.
So, there I am, waiting for Dr. Samples to take the small wooden stick out of the bottle of acid, and place it gently on my eye.
My eye is fighting terribly, to close, but can not. My eye felt dry, and terrible. Let's get this over with! I want to blink!
Yes, the acid stung, but what was even worse, and beyond torture, was what happened next!
The acid cannot remain on your eye, and needs to be thoroughly washed out.
So... eh hem... This is difficult for me to go back to.
He took a warm bottle of warm saline solution, and forcefully squirted it into my eye. It seemed all the world to me, like a hose spraying in my eye. It seemed to go on, forever, although I am sure it was less than a minute.
It was forceful, and although not painful, the frustration of trying to close my eye, or blink, naturally, was enormous! Talk about frustrating! It took my breath away!
I did not cry. At least in the office. I was brave. I was stoic. I was silent.
When I got into the car, Gary, who was driving me home, asked how it went.
It was then, that the "sup sups" hit, and the trauma hit. I cried, nearly all of the two hour drive, home.
I had this procedure done at least four times, if my memory serves me correctly. It was always the same story. Quiet, stoic Jennie, followed by weeping on the way home.
It never did make any difference. My eye would not scab over and heal. It was stubborn marfan tissue that resisted every treatment.
It was time for surgery, again.

CHAPTER FIVE

Jennie has a Band Aid on her eye ball!

With the news that the acid treatments were doing no good, we scheduled surgery. (Oh, that was fun, for nothing!) The plan now, was to "patch" the hole with a piece of someone else's sclera. You know, a cadaver, or donor tissue. The surgery wouldn't be as invasive as the first surgery. The thing I can't figure out is this... How could they sew it on, and not make new "unhealed" wounds? I never asked, and I never found out. The problem, however, never came to be, so it's a moot point. :)
They asked that I have a responsible adult with me, at the time of surgery, and with me, the night of surgery. Cool! Andrew was 12 at the time. I chose him. I had no one to go with me, really, so I found someone to take care of David at home, and Andrew and I went up to OHSU. After the surgery, we'd taxi from the hospital, down to the Double Tree Inn, (where they have those wonderful cookies!) and then go back, the following morning, the same way. I did have someone drive us from Astoria, to the hospital, and to come to pick us up. I think, again, it was Gary. Gary helped us so much during this time!
Otherwise, it was Andrew and I. We were on our own.
Why did I choose Andrew? Well, we were becoming surgery buddies, and we could relate to each other, on this level.
I'll tell you, I never had such a blast having surgery!
It was a breeze, actually. Yes, it hurt a little, but not badly at all, and the fun we had far outweighed the hassle of cutting into my eye, again.
The surgery went fine, and they released me. I was drowsy, but by the time I got to the Double Tree Inn, rested an hour or so, Andrew and I were ready to hit the town! At about dinner time, we took a walk in search of food. We giggled, as we found a 7-11, and bought all kinds of junk food! Anything our hearts desired! I think we ended up with every product Hostess makes! ...and pepperoni! Soft drinks! Hot dogs!
The next morning, I woke up, all bandaged and a little bloody, but fine. My post op appointment wasn't until after noon.
Andrew and I set out for downtown.
Here I was, half blind, wandering the streets of Portland, with my twelve year old son guiding me.
I remember laughing so hard that I was afraid I'd burst a stitch.
Part of the novelty was in people staring at us. I don't know if you have ever seen an eye cage, but they make you look like you have a fly eye! Yes, people stared at me. I didn't care! I was out to have fun!
We walked to the bank tower, downtown, and raced in the elevators, to the top... several times! Got out, had a soft drink at the top cafe, and headed down, again... several times! Then, it was off to the fountain park. We dangled our bare feet in the fountain, and ate chicken and rice, sold by a vendor. We discovered a new kind of chili hot sauce, that even now, remains a staple in our refrigerator. We doused way too much of it, on our rice. To this day, when I pour "a little" on my rice, I think of the fountain, that day.
I can only imagine what a sight we were. Me, bandaged on one eye, bruises surrounding it, being lead by Andrew. Both of us laughing, uncontrollably, most of the time.
Finally, it was time to go back to the Hospital to have the first bandage removed, and to see how the patch on my eye was looking.
They re bandaged me, and set me free. Everything was good.
To this day, I love my little patch! It looks all the world like one of those little baby band aids on my eye ball. It's amazing what they can do!
I was on the road to recovery... My eye, finally on the up side of the healing process. I was still learning to use it, but every day's discoveries were amazing to me. Oh! How a blade of grass is really supposed to look! Did you know there is actually a design on C and H powdered sugar boxes? On the blue part? I'd lay in on my stomach and stare at things, for hours. Carpet fibers amazed me. They have little hairs on them! I got way too little done, just because I was so busy learning to see, again!
I had trouble, however, learning to tie knots while fishing. The eye was designed to see long distances. Lens implants take away much of the ability to see depth. Cataract lens implants are sewn to the muscles. When you have no muscle, it's much different. The lens doesn't flex. It's more like gazing at a poster, or a post card. My other eye became my backup eye, and my new eye, my lead eye. I used the new surgery eye for long distance, and my other one for up close reading. It took a long time to be able to do this without thinking.
Little did I realize that before long, my other eye would fail to the point of having surgery on it, also. I would have my other eye's lens removed, and a new lens implanted, there! At that time, I would have to again, reverse what I depended on for my lead eye. I would have to learn to use the previously surgeried eye for the reading eye (close up eye), with the aid of reading glasses. My brain would become very busy, again! When I think about it, I realize that this is partially the cause of extreme fatigue that I felt, during both of these periods. I don't think we fully understand how tiring this kind of process can be, along with our every day rituals of living. There were many times, during both of these surgeries that in the middle of going about my daily life, I have the urge to close my eyes and cover them with my hands. I still do this, when I get frustrated with other things. It's a natural response, to me, now. It's like I'm saying, "Too much info! My brain is now full!"
I didn't realize that I was losing my eyesight in my left eye, until one day, walking on the river, in January of 2002. I was seeing shadows on this particular day, and I could not identify why. I covered my right eye, with the lens implant, and tried to make my way to the house, seeing only out of my left eye. I took one step, and stopped, before I fell down. I had become so reliant on my new eye, that I believe my left eye had grown lazy, or, the lens had moved further out of position. The world was dark, in my left eye, and I decided right there and then, that I would go back to Dr. Robertson. Since my eye surgery, and my post eye surgery problems, I had been lazy about returning to Casey Eye Institute. It was time to go back.
I let out a huge sigh, as I digested what this all was going to mean.
I had a lot of decisions to make, soon. A lot of "what ifs" to go through.
What if it didn't work?
What if my brain could not learn to use the new lens?
What if (and there was this chance) I would see double, and my brain could not combine the two images properly?
What if....
I called Dr. Roberston, within a week.

I think, next, I will copy some of my writings regarding my surgery, that were written in my "Jennie's Fishing Life." column. I have reviewed many of my posts, during that time, and believe it will offer some in"sight" of how I felt, during this time. The misleading and eternal hope I felt, that caused me to think I was seeing better, when in actuality, I was not. The relief of seeing a little bit better, that led me to think my sight was actually good, when it was not. How a little bit of improvement can lead you to sing, "I'm healed! I'm healed!" when you are not.
Presently, I have "learned" to use my vision to the best of my brain's ability. However, the fact of the matter is that it could be a lot better. My brain has learned to meld several images into one, by use of my other eye. But, I'll get to that, later.

CHAPTER SIX
Clippings from my journal of archived eye experiences:
Anticipation...

August 9th

The joke was that I had lost my eye surgeon's phone number. If you recall, or perhaps you don't, I was supposed to have my eye surgery done in June, when fishing is at it's slowest.
I didn't. "I lost my surgeon's phone number..." Yeah, funny.
Now, I'll probably have it done in the next two weeks and I'll miss Buoy 10 fishing.
I'm headed to Portland this morning to go talk to my surgeon about it. Oh, dread.

August 9th 7:41 P.M.

"Do I need wading shoes?" Nah, I'm lazy. These casual sandals that I wore to Portland will do just fine.
"Do I need to retie this tippet?"
Nah, won't catch anything anyway...
Kilchis sits by me after dinner, back erect, head up, in wait.
He knows what happens next.
The river.
"It's time to go to the river, Mom."
One paw comes up to lay on my thigh.
I didn't really want to go anywhere. I'm tired. The doc said my eye is legally blind, or slightly worse. (How can it be worse than blind?)
I'm depressed.
At first, I told him, "No, Kilchis, down!"
He persisted. He knows what is best for me. He knows to draw me away from the computer when my face looks sullen. He begs me to quit typing, to stop cleaning the kitchen. He tells me those clothes don't need to be folded right now.
"It's time to greet nature with a splash!" He seems to say. It's time to listen, to watch... to be out of doors, to be free!
I give in.
I'm still in a skirt and tank top, but I'll only be out a little bit. Kilchis just needs to run. I take my rod down from it's place, slip my fly vest over my shoulder, and drag myself one foot after the other, out to the river.
I am not matching Kilchis' enthusiasm.
The sandals I am wearing are not made for rocks, and my ankles tip and tweak as I nearly fall to the river's edge.
Kilchis knows best. My mood lifts by the time I am paying out line. My feet feel better too, planted safely in the sand.
He's already off, chasing a flock of fowl that we spooked, splashing through the riffles, and barking frustration at the top of his lungs. This is dog's work, and he craves it.
The wind is blowing strong, straight in my face, and I look longingly to the other side of the river. I have a skirt on... I could wade across, then I could work with the wind. I'd have to take off my sandals though, and wade barefoot. The rocks look uncomfortable, the river cold. My shoes are leather, and I like these shoes.
"I'm staying here." I decided to rough it, and cast right into the wind.
Three inches of tippet, and a borden's special, whip into the wind and land, curled, 20 feet from where I wished it had gone. I start to bring my line in rapidly, to attempt a more accurate cast.
JERK! Fish on! I brought in an 11 inch cutt!
That's weird!
I released the fish, and tried again.
My line swirled and fought against the wind, dancing in resistance, it landed, curled again, in mid current.
JERK! FISH ON!!!
I couldn't believe it! These fish were taking right at the point where I usually stand, when I do cross the river!
Twenty minutes, and six fish later, I met up with Kilchis.
Soaking wet, filthy, and wagging his tail, he looked up at me and smiled that special dog smile that always melts my heart.
"Told you so, Mom... Feelin' better?"

August 12th

It's Andrew's 15th birthday today! It just keeps getting harder and harder to figure out what to buy for a teen birthday!
Yesterday Bill and I fished tidewater for cutts. What a beautiful coastal day! It's very rare to be able to wear shorts and a tee shirt fishing on any river at the coast. Although the temperatures are occasionally warm enough, the wind usually picks up enough to send a shiver down your spine.
Yesterday's breeze was tolerable.
We took Andrew to work, boat in tow, put in at the muddy boat launch, and off we went! (Toot toot! As Jim Erickson likes to say!)
Sitting in the small duck boat, I stretched my legs across the side, and lazily commenced to fish.
We trolled up river, watching a beaver cut a vee across the water ahead, identifying birds, releasing an occasional cutt.
Noticing our depths go from 6 feet to two, I gazed down, watching for snags that could come into contact with the propeller.
I bent over to release a dandy fresh searun cutt, and witnessed the transformation of the river as the tide changed. A warm wind picked up. The smooth and lazy slate of river, which had reflected long beams of sunlight, transformed into a shimmering sheet of diamonds. Each tiny riffle sparkled so bright I had to squint my eyes.
I was dazzled! The gift of sight is precious, and yes! I want to have my other eye fixed! Imagine all this, times two! Two cutthroat! Two salmon! Two rivers! :)
So, as soon as 8:00 comes round, I will be calling my surgeon to make an appointment. "Doc? I want a double!"
I'm a bit sunkissed, and at peace with my decision this morning.
Ifishstock: Been getting some serious complaints about the day that I chose. Please vote here for the day of choice. It was Sept 14th, but we may now boost it up to the 21st. I wish this weren't so difficult to pick a date. (Grumble grumble.)
September 21st really has better fishing tides, and the day does not conflict with the Tillamook Angler's disabled children's fishing day.
Off the the races...

August 13th

Off to B 10!!!
Oh, what a mellow trip this will be! NOT!
On the way, we'll pass through Nehalem, and I'm sure I'll get pulled to the dock there, but Bill has his heart set on bouncing around in the grand Columbia. We'll get fish! Right? :)
Surgeon has no time in the immediate future to do my surgery. Bummer. It'll prob happen after ifishstock 2002. Smack in the middle of fall salmon.
I told Bill he can play my fish, but I'm going to be there to hook them, eye bandages and all.
Bill's got the boat hooked up, and is doing that motor revving thing. It's the male way to say, "Hurry the heck up!!!"
Bye!

August 15th

Yes, I was frustrated last night. I had to simply walk away from the PC. I called Kilchis, slipped on my rubber boots, and waded across the river without felts... It was slippery, and took forever. Ever tried to walk on glass? Finally got to the other side, laid out my fly, began casting. The dinner bell rang at the house. Andrew yelled, "MOMMMMMM! David needs a ride home!"
Argh. Waded back across, sputtering not very nice words, got in the truck and headed to town. I then marched upstairs and watched ICU, which featured Marfan Syndrome.
That was depressing...
There are so many GOOD things that we can do with our community at ifish. So many that I have to pick and choose how much effort that I can put into any one thing.
Out of the ifish/computer realm, there are life things to deal with. School money shortages, and fund raisers, Doctors appointments, fishing... I've been asked to fill out a form for STAC (Salmon Trout Advisory Committee) ... where did that form go?
I'm a 'feel good' junky. I like to do things that help others, or make a difference in their lives. I also, however, get disgusted, and would like to see some laws changed here and there.
On the computer, people write to me, occasionally, about someone who broke their rod, and could we please help them raise money for another?
... Or the most recent battle for our sports fishery... we need letters, and campaigns and...
This little girl needs surgery, and she loves fishing, and...
My heart goes out to all of them, and I can only find 35 hours in one day to help. It's frustrating!
I'm finding myself knee deep in projects. My 'to do' list is now written on a cashier's tape, rolled up two inches thick, and dangling to the ground.
We need a form to have people sign to get clamming laws changed. I'm going to do that soon.
Ifishstock needs organizing and the park permit paid for. I'll do that today.
I have four or five products I want to share with you from ICAST.
Stan Fagerstrom's new column is in my in box, and needs to be updated.
There are two new ifish clients that need to be welcomed and pages and links for them made.
Ifish community members want a business directory, and I haven't even decided on the software I'll use, or how it will work, or the user rules, or...
There is a thread or two on the discussion board that bother me and need watching.
My bank account? Balance that? Ha ha! Right!
Gary Krum is getting a very special mention on ifish. I'm building a web page for him to help direct people to where they can help cover financial needs for medical treatment. I'll post that later today.
What do you mean, we are out of milk again? The cat needs food? What cat?
I turned the pig roasting idea over to Kiwanda Kid. Bill asked me questions about it. I told him, "I have no clue! I'll give you the pigmittees phone number!" :)
Most importantly, I scheduled my eye surgery for September 18th. They will figure out what artificial lens to put in on the 10th. So cool! More monofilament in my eye. What pound test? :)
What do I do first? Where do I start?
Coffee. I'll be right back.
Jennie's in the office today. All 35 hours of it.

August 19th

It's 5:00 in the morning, and I've done my dog routine.
I stagger down the stairs, dodging the wagging tailed, dog parade. We all head to the laundry room where they wait for their expected cookie. Outside they go, dog biscuit in tow, to bark at the creatures of the night.
I grab my coffee, take my vitamins, and turn on the computer to warm it up.
The dogs soon bark to get in, and are given a pigs ear to pacify them, while my coffee goes to work on me.
It's time to answer e mails, sort them into folders, figure out if I have the wits about me to write back yet, or save it for later, when my brain is more caffeinated.
I check the stats, make sure the weather station didn't blurb overnight, do a quick review of the board for inappropriate posts, and plan a "ready, set" contest for the week.
Mondays and Tuesdays decide my budget for the week. It's when the hub of activity on ifish needs care.
New advertisers? New clients? -- Or, will it be a true budget week? New software updates to purchase? Web bills to pay? In this weeks case, a pig to buy for ifishstock!
E mail decides my fate, and my diet.
I'll tell ya, sometimes it's very comforting to know that I could live for two weeks as long as my freezer is working, and I have three shelves of vac packed salmon and clams!
Yesterday I fished Nehalem. John, the fish checker reported bobber caught salmon at deer island.
Bill and I lazily put in around noon, the boat filled with trolling rods, bobber rods, and if things really got boring, rods to play with the cutthroat.
Let's just say that all rods came in handy. :)
Salmon were splashing all around us, including one that came right at the boat. "Resident Chinook" I giggled, as it's gray faced, black body arched out of the water, landing with a lazy spaloosh!
"Yuck! I don't want to catch that!"
At home, tired, I put together a meal of leftover Chinese food, and collapsed on the couch.
"Not so quick!"
Kilchis reminded me that he had been housebound all day, and it was his turn to play river.
He sat, erect, waiting for my bones to move. "Mommmmmmm!"
All right! On with the tennis shoes... One foot in front of the other... I'm tired!
I didn't take my fly rod. The river is too low, and the current? Well, there is none.
The wide expanse of river out back lays quiet and still. The algae doesn't sway in the current, it curls up towards the sun and freezes like a stalagmite.
I leaned over to stare.
This eye, or this eye? Which sees it better? Reaching up to cover one eye with my hand, I stared.
The eye that needs surgery has depth perception, unlike the eye that I have had surgery in. That's a nice feature, depth perception, but the focus was blurry and cloudy. I couldn't make out the details.
Still hunched over, I then covered my bad eye, and took inventory on what I could see with it. Detail! More detail! I reached over to see if I could touch it. I missed by about 6 inches.
Depth perception is a nice feature. I'll miss that.
I remember, after my last eye surgery, it took weeks to learn to walk again. I could see things, but I couldn't tell how far away they were. Walking on slopes or rocks was a real challenge. I fell often. I looked like I had been through world war II. Bumps and bruises everywhere.
After September 18th, will I have two eyes without depth perception? Or will the combination of two eyes that see create perception?
Still covering the bad eye, I went for a test walk down the river. I tripped on some rocks, but I could see!
When will Kilchis realize he'll never catch a dipper? It's almost like the dippers know Kilchis is coming, and they come out to tease and play with him. They dart across the river, with Kilchis fast behind. I've never heard a dog with more frustration in his voice!
His nails are worn to the nub, from racing on rocks. I tracked him with my good eye, splashing across the shallows, then unexpectedly hitting a deep spot, his momentum burying him up to his ears in water.
I stopped then, to cover my surgery eye.
He vanished. Kilchis was gone!
Quickly, I changed eyes again, and he reappeared.
I need surgery. Yip. I do.
My doctor knows that, but I need to know that as well.
Last year, after the busy hectic planning for the party, I remember feeling let down. All the excitement of planning, preparation, and the final "hoopla" left me with nothing to look forward to.
How do you avoid that? Plan surgery four days post party!
Still, I worry. Will I be able to cast accurately? Will I be able to step out of the boat, without landing in the water, instead?
An image fills my mind.
It's five in the morning, and I'm ready to make my way downstairs with the wagging dog parade.
Those are tough stairs, and I suddenly see myself, missing a step and catapulting down the stairs, head over heels, dog tails and bodies landing on top of me.
Depth perception is a nice feature.
Do I really need surgery, Doc?

September 11th

My doctor says I know way too many medical terms.
Just like Andrew, there are fun games to play at the doctors.
Andrew walks into a new doctors office and interrupts his/her first words. "I have dislocated lenses in my eyes. I'm hyper mobile. I am tall, with long arms, legs, toes, and fingers. Arachnodactyly, it's called. Look at my hands, doc. What do I have?"
If the doctor hesitates at all, he turns to me and says, "Fail. Mom, this one just won't do."
Yesterday, as the (fellow) doctor described in detail how my eye operation will be different then most cataract operations, I began to follow his dialogue and speak before him.
"See?" He held a plastic mold of an eye ball up to me. "Your muscles that hold the lens in place are broken. They are called..."
"Zonules". I interjected.
"Yes, so, you have no capsule to hold the lens in. With a cataract operation in a healthy eye, we can go straight through the iris, the pupil, and suck it out and replace it. Bingo! Done! In yours, we have to make two incisions and go to the back of the eye to remove almost the entire..."
"Vitreous"
"Which leaves you vulnerable to a..."
"Retinal detachment. With marfan syndrome, I am already vulnerable to those. Is this cumulative?"
"Yes."
"Yuck".
"Yes".
"Also, marfan tissue is sometimes like trying to make incisions and sew up foam rubber. It's very porous and weak. This is called..."
"Scleral weakness. Doc, look at my other eye they did surgery on. I have a scleral implant because the tissue wouldn't heal. A perfect example of scleral weakness".
I lifted my eyelid to reveal a cute little bandaid looking patch.
"I give up." He shook his head. "You know what we are going to do, right?"
"Right".
"You know the risks, right?"
"Right".
He looked down to review my notes... He began to chuckle as he read...
"What's this about? The chart notes state that last time we saw you, you put off this surgery until Spring Chinook Fishing was over."
"Yes, doctor".
I wanted so badly to add to those chart notes.--Surgery put off until Fall Chinook is over... Surgery put off until winter steelhead is over.... Oops! It's spring again!
After September 18th, you may see me out on the river with a metal cage over my left eye.
Don't tell my doctor.
I promise to hand off the fish to Bill, but I have GOT to feel that bite!
Maybe this year would be the best year to learn to pheasant hunt, instead.
I dunno. Four to six weeks, he says...
I know what the doctors are going to put on my chart notes.
Good patient?
FAIL.

September 14th

It's Ifishstock Day!
I'm going to the Tillamook Anglers Disabled Kids Day at 9, picking up my son's three friends at 11:00. It's David's birthday on the 18th, and I have surgery that day. Happy Birthday, David! In celebration, I will have my eye cut open and have a new lens put in! :) The things I do for my kids...
I've been trying my hardest to punish everyone around me for this decision. "Bill! It's bobber season! How could you have encouraged me to get this done during my FAVORITE fishing season? I'll miss EVERYTHING!"
I'm beginning to think it's a conspiracy. Just because I have caught 8 salmon, and he hasn't...
He wants to punish me!
Don't you think?
I do.
He wants to go out fishing with his friends, come back and flash those huge chrome hogs in front of my bleary black eye.
"Can you see it, Jennie? Aren't they purdy???" ARGH!
I think I'm sick. I have a fever. They can't do surgery when I'm sick, right? My car broke down. Can't get there, Doc. I'll do the surgery after fall hogs, after steelhead, after spring chinook, after cutthroat... sometime.
I think I'm nailed in on this one. I'm going to have to live vicariously through ifish. You know, receive pictures like this one, of Tim Juarez, and drool.

Tim Juarez
Click here for a larger image

People laughing, holding up beautiful chrome chinook, and high fiving, as if to say, "Poor, poor Jennie.... OH WELL!"
The other day Tim was out fishing, picking off the pretty fish, one by one, with his cousins in tow. You could hear them a mile away. They had a wonderful time!
You always know when Tim is approaching your boat. You hear people laughing, whooping it up. Tim has a permanently embedded and contagious sunny outlook on life and fishing.
Even on a slow day, he is SURE the next cast will produce a fish.
"Here it is, guys! This is the one! There will be a take down right here. It's time! WHOOOOOO HOOOOOOO!"
You never lose hope with Juarez! He's a total blast to fish with, and his excitement is contagious.
O.K., Time to get moving. Into the shower, over to Whiskey Creek Hatchery, and then to Kilchis River Park.
I think I'll be exhausted by tomorrow! Way too tired and physically wrecked for surgery, right? No way I can recoup by Wednesday, right Doc?
I feel a cold coming on.

September 18th

I keep thinking... Hey, as long as they have me under anesthesia, do you think that they could wax my legs, too? It hurts so bad when they wax my legs! I'm under and asleep, let's get the important things in life done. Make my legs soft and silky, Doc! Go to it!
I'm thirsty, and it's 5:30. I can't have a drink until when? AFTER SURGERY? No way! :)
I walked on the river last night and had a little talk with God. I spoke out loud. It was so beautiful on the river bank. "God, there is a little bit of flow to this river!" I squatted down, level with the deep green water. Tiny fingerlings jumped, as if for joy, and no other reason. A tiny leaf was making it's way downstream for the first time in so long. The river has been nearly still, stagnant, and the recent rains gave it just enough momentum to start the flow in motion.
Fall is here, ladies and gentlemen, start your engines, please!
The sun was setting, casting a dark shadow over the river. The sky turned crimson. I realized my mind was full of questions.
"God? Have I been good? Will I get good eye sight, or am I about to learn a huge new lesson?"
"God? Why so many bad things? Why the World Trade Center, and the hatchery closure, and why do a certain small group of people on the discussion board want to cause problems? Why do you allow these things? Why do politicians care more about popularity and votes then the causes we have chosen them to stand for?" It scares me, because if those things can happen..."
I continued my walk. Kilchis was 'out of character' quiet.
I am terrible with names and faces, when I meet people.
But the river... I have spent three years getting to know this stretch of river. I know it's name and face better than any person I have met.
As I walk along, I am met with small rocks, then a strip of sand. Large boulders to my right, tiny pebbles to my left. Listen. I hear the second riffle! I could make my way up and down that river, with my eyes closed, and know just where I am by listening and touching. I bet I could even cast to the right spots, with my eyes closed.
I opened my eyes to find bright orange maple leaves shining in the evening light, standing out against the wet, black rocks. They were surreal and beautiful.
"God, thank you for sharing with me this river, that always stays the same, constant, yet changes with each season. Thank you for the mountains that stand above me, strong and proud. Thank you for all of the beautiful places that I have lived, that I never thought I would blessed with. Im undeserving.
Thank you for my kids, for the vision that I have, and for the friends that have showed concern for me."


Photo, courtesy of Marie

Looks like Marie was out last night too. This picture is nearly exactly what I saw, as I left the river banks.
I'm still thirsty. I'm off to take David to school, and then off for a vitrectomy and artificial lens replacement.... By the way, sewn in with monofilament. :) How appropriate!
It's going to work, right? :)

CHAPTER SEVEN
Surgery... I did it!

September 21st

Hi. Testing... Can't see very well.
For all of this pain, they didn't even wax my legs. :(
OK, I think I can write a little.
I am going to keep a complete diary of what it is like to go through this surgery, because I forgot last time, and I want to be able to let others, who might go through it, read it to see. I am going to be totally honest about it too.
First off, it's no fun. Period. :)
The night before, I figured I would eat a whole bunch, because I couldn't eat after midnight. Unfortunately, I just wasn't very hungry. The next morning, on the other hand, I was starving and thirsty!
I must admit, I cheated a little. I had a couple sips of water, and on the way to Portland, I had a sip of Bill's coffee. It was superb!
The ride to Portland was calm and uneventful. Bill drove me to the Casey Eye Clinic, all the while trying to maintain calm as I picked fights with him. I was not in a good mood. He took me to photography, so that they could get a picture of my eye.
They told me surgery was scheduled for 1:15 PM. I was there at 11:00.
Bill left, to go visit his Mother, and then Pete came to visit.
I was jittery. Then, Glenn and Ginny came to visit. Right when I saw them, a nurse called me into the operating room. Hugs all around, and they whisked me off to the yucky room.
They did all the pre op stuff, made sure my last echo report was there. Then they gave me some kind of medication that helps you to forget. Isn't that strange? Ever heard of that stuff?
So, I would be calm, awake, but not remember? Bizarre.
The doc explained that he might want to put the lens in a different place then before, due to my weak scleral tissue.
Then, I forget what happened until I woke up.
I felt awesome! "Hi Bill!" I guess I told the doctor I wanted a cheeseburger, but I have no memory of that, either. "Let's go home!" I threw on my clothes, feeling awesome, chugged down a 7 up, and was out the door and into my car.
"Do you want to go home, or to a motel?" Bill asked. I wasn't sure. He suggested we drive around a bit, and figure it out.
Five minutes down the road it hit. I hurt. I hurt bad. I hurt really, really bad. My stomach began to turn. I felt hot, then cold, then hot, then...
"Bill.... take me to a motel. No way can I travel."
He took me downtown to the Doubletree. Every bump in the road sent pain through my entire body. He registered for me, and then came to get me out of the truck. I have never felt so helpless. I followed him, hand on his shoulder to the room, where I collapsed onto the bed.
I felt awful. He wanted to help, but nothing helped. He finally left to go home to take care of the boys.
I'm not sure of the timing of all of this, but sometime Pete came to see me. He brought chicken soup and crackers. I dozed off and on, and cried a lot. That's all I remember. Oh, I remember getting up to throw up, but I couldn't. I wasn't the least bit embarrassed. I guess the anesthesia was wearing off, and that's tough on your body. Pete left, and came back. Bill called. Pete left again. It's all a blur. I called room service and ordered toast.
I called the kids, and I remember crying on the phone. What a wimp I was! I must have just felt awful. I did.
Next morning, I went back to the doc, and they took off the bandage. Talk about pain. MAN! Get away from me, nurse!
They applied some drops that numbed my eye, and I really wanted to steal a bottle of that stuff. :)
The doc came to check my vision. Everything was bright pink and neon! 20/200. "Don't expect much more for a while. There is much bleeding and trauma to heal from first."
Bill came to pick me up, and we went home. I was fine the first half of the drive. Then the percodan began to wear off. I started to sob again, and feel miserable.
I'll start on day two later...
Yes, I am feeling a bit better. The worst part is waking up. My eye crusts shut and there are these little crusty things floating around by my sutures in my eye. Now that smarts!
I am going to try and not take pain pills again today... Didn't work yesterday. Maybe today?
One bit of encouraging news: Yesterday, while watching TV, I could, for the first time, read the news ticker on the bottom of the screen! I read it to Bill for much longer than he wanted to hear it! I don't know how, cuz if I open only my surgery eye, and close my other, it is all blurry, but I did it! --and I have never, ever, been able to read that before!!! :)

September 22nd

I'm sitting here waiting for fall to happen. Any minute now... It says so on the calendar. I keep looking outside. Rain, wind, rivers rising.... any time now.
Especially with my eye so sensitive, I'm getting tired of "beautiful" weather. Sunshine, warm, and dry. It's just too darn bright out there.
It took me less time today then yesterday to wedge my eye open. It's the worst part of the day. Waking to swollen tissue that is glued shut. First, I have to wash the tape goo off my face with oil. I have to wear a wire cage over my eye at night, taped on with sticky tape that is absolutely wreaking havoc on my complexion. Where is the Estee Lauder tape remover? :)
I woke up twice last night, my wire cage flopping around on the side of my face. Get up, retape.... go back to sleep.
I'm having less pain today, and haven't taken any pain medicine yet. I have been tempted, but NO! Jennie wants to be Jennie today.
It's almost normal routine. Get up, soak my eye till it opens, give dogs a cookie, let them out, go get coffee, sit down, get up, let dogs in, give them a chewie, sit down, and try to wake up.
Since I can't work on the computer for hours, or watch TV for hours, I've been getting up to take the dogs for more walks on the river. I think we did five yesterday. Sometimes I walk, sometimes I just sit in the warm gravel and marvel at my surroundings.
I found a cane on the river beach that fits my hand and height perfectly. It helps me to not fall as I try to maneuver the rocks. I can't help but think the tree that lost this limb was thinking of me.
Between the pain medication and the new sight, it's difficult to tell where the ground is. I look a little like Grandma out there, I'm sure, but the dogs enjoy their follies on the river, even if Mom's a bit slow.
Anyone passing, seeing me with huge sunglasses and a cane, wobbling slowly down the beach must think strange things are happening in the neighborhood.
About midday, my vision begins to come into the best focus. It's still not perfect, but I can tell improvement, day by day.
I found a rock on the beach yesterday that contained crystals. It was amazing. I stared at it for quite some time, oohing and awing at the sunlight's reflection on it. I put it in my pocket. I'll never give up this rock... this rock of vision.
I looked over the river's riffles as the sunlight danced on them. A million crystal jewels sparkling in the sun, just like my rock. Is this what people see all the time, or is my vision skewed? I'll never know.
What's that? Can I see the definition of structure on the bottom of the river more clearly? I studied the rock bottom, the shadows and hiding places where steelhead may lay. I approximated the winter river flow, and measured just where I would cast to follow those lines.
I looked up at the trees and the definition stood out more boldly then I've ever seen. More green, more intricate, more intense.
It seems I take so much in, that my brain becomes exhausted and I have to close that eye for a while. Too much stimulation, too much information. Bright lights like flame, or sunshine into that eye causes a bolt of pain along with the detail and stimulation. Another cause to close, to rest, to regroup before I dare open it to new experiences again.
I'm just now beginning to open that eye for small peaks at the screen. It's just too bright for it yet this morning. It will open when it's ready.
Until then, I'm just going to sit here and wait for fall. I have a feeling that fall is waiting for me. I haven't healed yet. I don't have permission yet to reel in a 40 pound monster king.
When I get that note of approval from the doctors, the sky will cloud over, the sun will hide behind great billows of black and gray, and a new and eerie darkness will spread over the horizon. The wind will pick up, and strip the vivid orange and yellow colors from the trees.
Big, fat raindrops will fall, taking the crunch out of my step. The rocks will be blanketed in wet leaves as I make my way down to the river.
I'm hurrying to get well. I have to heal first, before those salmon come by my back door.
Blame the weather delay on me. Blame it on the doctors... but Fall is coming. I have new confidence every day.

September 23rd

Bummer. Thought I was mostly done with the pain thing, but this morning, I woke up to OUCH!
I had a rough night. Kilchis was sprawled out on the foot of the bed, and for all the life of me, I thought a cow had taken up residence. I can only sleep on my right side, because of the eye cage, and Kilchis is used to making room for me on the other side.
I woke up at 4:30 to intense pain. I was bummed to have to grab a pain pill, but... I guess that's what they are for. 5 days post surgery... still hurtin.
Speaking of Kilchis. I nearly killed him yesterday. It was a frightful, awful, experience.
In my Ford Explorer, the back electric window button is poorly designed, in my opinion. It is flush flat with the arm rest, thus allowing him, when sticking his head out the window, and resting his paws on the arm rest, to roll it up or down. I have learned from near death/choking experience, that I need to keep it locked from the front panel.
I have had three scares that taught me to be careful.
Yesterday I got brave. I needed something from the store, and no one was home. Idaville! I can drive to Idaville, I know I can! It's only 5 miles down a country road.
Bill had driven my car last, and thus, didn't know about the dog situation and the window lock. It had been left unlocked.
I was concerned mainly about my driving ability, and didn't check it.
In with the dogs! Come on, Dee Dee! Come on Kilchis! Mom's driving!
Down the road, with deep concentration I went. I adjusted the windows so that only Kilchis's head could pop out a little ways.
Soon, I heard thrashing about, and Kilchis's paw on my shoulder.. ? I turned around quickly to find Kilchis, hanging from the closed window, thrashing wildly. He had lost his grip on the arm rest and was hanging/choking himself!
I quickly unrolled his window, but dang! This seems like a design flaw to me! I wish there were some way to fix it! Cover the button, something!
Kilchis appears alright, but was plenty shaken by the experience.
Anyway... I spent the day yesterday mulling around the house... actually went out fly fishing for a bit. Don't worry, it's safe! There are no fish out there, anyway. :)
The weather forecast calls for "beautiful" weather for the next 10 days. It's all my fault, you know. No salmon in the rivers till Jennie heals and gets the doctors OK to reel in a big one. I feel so dang powerful

September 24th

What am I missing this morning? Eye pain! Cool!
It even opened faster, I've been up for a half hour, and I'm already actually "using" it!
Truth be told, I'm a bad patient. Bill and I drove to Pacific City to watch the action yesterday. It's more like driving to see a wrestling show, or roller derby than fishing. It's hilarious! Elbow to elbow casting! People yelling, screaming, boats on one side, bankies on the other. They don't mix well, either! I really don't see that the fish have much of a chance trying to get through. I guess there was a good bite in the early morning, but we missed it.
On the way home, there was a vacant parking spot on the riverside. "Bill? Got bobber rod? Got eggs?"
:)
We fished! I told Bill that I couldn't set the hook, nor play a fish, but that I could cast, gently. I did. The bobber did not go down.
Imagine, just for a minute if it had gone down. Talk about a practice in patients! -- I mean patience!! What would I have done? Free spool and say, "Uh... Bill? There happens to be a chinook salmon on the other end of this line, swimming around free. Mind reeling it in?" RIGHT.
I'm off to Portland to see the doctor. I think they are going to remove some stitches and measure my visual acuity. I'm kind of nervous and excited. "Is it good, doc? Izzit?"
My son Andrew, born blind, had this surgery performed at the age of eight. When they measured his acuity, post surgery, I'll never forget it. I could hear Dr. Robertson, same surgeon yell happily, up and down the medical office corridor, "Andrew sees 20/40! Andrew sees 20/40!" He was thrilled with his work. So was I.
I want to hear that same thing about me, 7 years later.
We have a new member in the family. Her name is Phoebe. She is Andrew's new sugar glider. They are nocturnal animals. Andrew worked all summer to buy her, and all her accessories, including a rodent wheel. Andrew's room is right beneath mine. Phoebe likes her rodent wheel. Rodent wheels make a lot of noise.

Hear Phoebe! Hear Phoebe play!
Hear Phoebe play all night!
Play, Phoebe, Play!

Jennie will eventually learn to sleep through the sounds of the rodent wheel, right?

September 25th

What a horrible night! I am supposed to wear and eye cage, taped to my face every night.
I searched for it. I could have sworn I put it "right there"!
I searched until midnight, when I finally gave up and taped gauze to my eye, giving up. This is a doctor no no. You have to keep pressure off of the eye.
As I lay there, a thought came to mind.
Earlier that morning, I had Bill drive me to Portland to my eye doctor. I was wearing a full free flowing skirt and tank top.
The nurse called me in, and I sat down. I got back up. "What's this?" There was an eye cage stuck to my rear end! I thought the patient before had left it, and the nurse had failed to whisk it away.
"Gross! Let me wash my hands! I know what gets stuck on these things!"
Well... Now I think that that was MY eye cage, and I wore it on my backside all the way to Portland. DON'T LAUGH AT ME.
I'm sure the nurse was plenty embarrassed, and now I feel bad.
"Nurse? This is Jennie. I owe you an apology. That was my eye cage in the chair. I wore it on my skirt. Please send another?" Argh.
I guess life balances out with good and embarrassing.
I really was thrilled with what the doctor told me!!!
It can rain now! I can fish!

September 27th

I am being thrown into work overload.
I have received too many requests for work!
Why is it, when you are self employed you either spend half of your time worrying about too little work, convincing yourself that you are no good, and no one wants you anymore, and then, all of a sudden, bang! You cry in self pity because you have too much work!
Please help me to remember that when I have too little work, I should celebrate, go fishing, and know that all will be OK?
I'm doing better, eye sight wise. It's a little strange, and difficult to sort out new images, and sometimes I get overloaded and see nothing at all. It's like it totally blanks out on me. Wide spaces of nothingness. I have to close my eyes for a moment and it all reappears. I have to sort it out. This is a leaf. This is gravel. This is ground dirt... It's like baby steps.
I can't wait to see rain though. I want to see the trees move, and the sky get dark and ominous. I want to watch the leaves stripped from their limbs.
Most of all, though, I want to see my bobber, bobbing sideways in the wind, dancing in the raindrops.
Then, I want to get overloaded and see nothing at all. The bobber will totally blank out on me.
This is overload.
This is a Fall Chinook.
I'll open my eyes, and all my senses will come alive to the shock, and pressure, and wild erratic movements of the dance that I love most.
Everything in my line of sight will come alive, and I'll see everything at once, and yet nothing, all at the same time.
Yeah, that's what I want to see.

October 4th

Random thoughts:
*When am I ever going to learn that I don't need a contact case before I go to bed? I don't wear contacts anymore! I also search in the morning for my contacts to put them in! I had to hide them, just in case I try to put one in, in my sleepiness in the morning. Now, THAT would hurt my surgery healing eye!
*Never, never, assume just because you are almost all the way across the river, that you are there. I think that every time I cross the river. I'm three feet from dry rocks, and I begin to get careless. These rocks are still slippery, if not more slippery! One day I will fall. I know that! It is like that rule that automobile accidents happen close to home.
*Every time I write in this column and mention Andrew's name, I hear about it from him. He doesn't like it. I will begin picking on David more often, and leave Andrew, who insists on being called "Krazzy Joe" out of it. Maybe. Maybe not...
*Someday soon, I am going to leave early in the morning, on my own, and make my way upstream in a local river, to tidewater to catch a salmon with no one but Kilchis with me.
*I have to get in the shower and get going. I will not put in a contact.
And last:
*A couple of hunters are out in the woods when one of them falls to the ground. He doesn't seem to be breathing, his eyes are rolled back in his head.
The other guy whips out his cell phone and calls the emergency services. He gasps to the operator: My friend is dead! What can I do?
The operator, in a calm, soothing voice, says: Just take it easy. I can help. First, let's make sure he's dead.
There is a silence, then a shot is heard. The guy's voice comes back on the line. He says: OK, now what?

 

October 8th

Off to the doc to see what I can see.
Yesterday was a blast. Went to the Nehalem, and the silvers were doing acrobats all across the river! It's really good to see the native run so healthy for what, three years in a row now?
The whole river was an explosion of silver fireworks splashing all around us! I did hook a large 15 pound silver, and played it quickly to the boat. Released it unharmed. Funny, what did I catch it on? An Alvin!
We were trying to compensate for speed. The jet sled is out of commission, so we put the kicker on the drift boat. It's too fast to troll spinners the right way. You can just feel your spinner if it's working right, and mine felt like I was trolling a torpedo. Too fast! Bill had the great and crazy idea of trolling an Alvin. It worked! Bam! :)
There were so many silvers that one hit the bottom of the boat, and one nearly jumped in with us! Amazing!
I got home, feeling guilty about leaving Kilchis all day, and took him down to the river after dinner.
I fish for cutts half to experiment, and half to bide my time as Kilchis chases dippers. The water is really low again.
I remembered Mark, of First Cast Jigs telling me that these really small jigs, tipped with a bit of crawdad tail were like candy to cutts. So, I tried it!
I tossed it out, Thill bobber and jig, into the fast water at the head of the pool. It follows the rock wall across the pool, in a circular manner, and works it's way all the way around to a big boulder at the tail out.
I followed this pattern, mesmerized by the colors reflected in the water, over and over. Bright reds, yellows, and orange leaves shimmering, mirrored on the water across the pool. Occasionally a new maple leaf would fall, gracefully and land on the glassy surface.
I began to test my new eye. I closed my other eye, and tried to follow it. It wasn't easy. The little yellow tip of the Thill was barely visible to my new eye. It was like looking through a kaleidoscope of glassy shards. In fact, I saw three or four faint, but bright yellow bobber tips! With concentration, I did follow it (them) around the river flow's path.
Kilchis was off howling and yipping at a dipper. I continued my concentration, one eye shut.
"Please God", I said, as it settled by the boulder at the end of the current. "Please, let me see a bobber down with my new eye".
Just as I said that, just as the thought of seeing it, materialized in my brain, it happened!
BOBBER(S) DOWN!
I set the hook to a lovely 15 inch cutthroat!
"God got me a fish, Kilchis!" I yelled to no one in particular.
When I get a bobber fish, I am likely to say the stupidest things! I am so thankful no one else was there to hear. No one but God, who actually enjoyed my tremendous enthusiasm, I'm sure! :)
With the kaleidoscope effect that my eye gave me, I half expected to bring in three or four fish! I can't wait to get glasses or contacts to adjust my sight.
Anyway, the cutt came off the hook about a foot from shore, which was just dandy with me. I have been really lucky fishing for these precious fish. They have taken the hook, whether baited or lure or fly, right in the lip. I get kind of paranoid when I have to release these precious backyard pets of mine. :)
So, it's off to the doctor this morning, to find out why I am seeing multiples. It's not all bad, like I said. I mean, think of it... When you hook one fish, you actually see 4. It's a mighty quick way to limit.

October 8th later...

Why can't anything ever be easy? I'm bummed. I have an infection or something or another on my newly sighted eye. A cyst on my incision, or something. The doctor is hoping it will go away, but I may have to have surgery again.
It hurts.
It's hurt for about a week now, and I was afraid to call the doc. My eyesight isn't as good as it was, but close.
I wish I would have called, dangit. I did call once, but I told the guy on call that I didn't want to bother anyone. He asked if it was an emergency. I said, "Well... I don't think so." So he said to call back later. I didn't call back.
Life is a journey.... Mine is a journey from the beach, to the doctor's office. At least I can still fish. :)
I have a new batch of fun medicine in all shapes and sizes. It's not quite like a 'gift with purchase' from Clinique, but hey... it fills up my bathroom shelves!
Surgery, huh? Ish.

October 18th

Was it what I ate?
I had the goofiest dreams last night, all night long!
I woke up three times in the first hour, with fishing nightmares of one sort or another, losing my bobbers, or breaking line. They all woke me with a frustrated start.
Finally I dozed off for a bit... Blissfully asleep until...
I was on a dock somewhere on a river. I was fishing for steelhead with 10 pound test. (I went through my lines yesterday, organizing tackle and line. I'm sure that this is where that came from.)
All of the sudden I hooked a huge steelhead... I thought.
I played it for a while, but it nearly pulled me in! I was holding the rod out vertical, because I was afraid the line would break. I had to sit down on the dock, and brace my feet against the edges of the dock to help me from getting pulled in.
Finally I saw it! This was no ordinary steelhead! It was a platypus with a goofy look on it's face!
"Oh no!" I felt awful! I didn't mean to hook a platypus in tidewater!!! I searched around to release him. NO PLIERS! "Oh no again!"
I held the line just a foot from his mouth, trying to dislodge the hook. I thought that this would be easy, this is 10 pound line. But no! Whatever line this was, I'm going to use it, because it wouldn't break! Finally, I got it out of his mouth, and he didn't swim away. He became this goofy cartoon character that liked me! He wanted to play!
Now, this is too weird for me. They say you wake up from dreams right before you die. Well, I woke up right before I died laughing.
Speaking of laughing...
Want a great start to your day? I had a boyfriend of the rather cosmic type when I was a young college student. When having coffee at his house, in the morning, we would do a yoga exercise he taught me. It's amazing and fun how it works!
Laughter is the best medicine. Try this:
Sit closely opposite a friend or partner. One person begins by slapping their thigh, and mimicking a laugh. "Ah ha ha ha ha!" Whether you feel like smiling or laughing or not, you say those words.
Now it is your partners turn. Slap thigh and say "Ah ha ha ha!" Take turns and do this until you are both in stitches! It works! And it's a great start to your day! TRY IT!!!
Andrew and I did it yesterday on the way to his doctor appointment, and I had to pull over I was laughing so hard!
It helps, when you are stressed by things. I'm stressed with the condition of my surgery eye.
Just like last time, my tissue didn't heal. I have a hole where my incision was, that is leaking fluid. The outer couple of tissues healed, but not all the way through, so there is a bubble like cyst, where the fluid is collecting. Could it burst? We just don't know...
Funny, the nurse, when I asked her a question about my eye, said, "Well, Jennie, in a normal eye, this this and this would happen... But you... You are such an..... Oddity". Her face contorted as she said it.
"ODDITIY!" I exclaimed! "I'm SPECIAL!" (ah ha ha ha)
I have to do antibiotic eye drops four times a day, prednisone three times a day and refresh tears inbetween! I have a pocket full of medicine wherever I go! What a pain!
(Ah ha ha ha)
They'd like to do surgery now, but can't until my eye settles down. When it does, in three weeks or so, back to the operating table to cut some of the stitches to help me see better, and to try and fix the hole. Perhaps a schleral implant again? I don't know.
Anyway... Just talking about it makes me upset. I think I'll go get Bill now. Think he'll play?
Slap my thigh, and say. "Ah ha ha ha!"
We are going out fishing in an hour or so. Hope I don't catch a platypus.

October 21st

Allow me, please, just one column to tell you how very frustrated I am with my new vision and eye. I wish I hadn't done this surgery. Perhaps they will be able to fix it, perhaps not. No matter, if they even can fix it, it will mean more surgery, more tests, less days fishing and more days wishing.
Last night, I tried to read with my new eye. Not a chance. It made me feel so helpless. Even my old eye could read, if I held the book up close enough.
One of my frustrations has always been to try to explain to someone what it is like. With the modern advantages of a digital images, I can show you! This is for my family, mostly.... But here goes.
Things that look like this, in my last surgery eye:



-- look like this in my new surgery eye:



That was enough for me to weep last night. It was so frustrating, and hit me so hard, mostly because I was tired. I feel better today.
When I am outside, and try to use my new eye, instead of what my right eye sees, like this:

I see this:


It's like it's blurry and too sharp, all at once.
Now, combining these two together, it's no wonder I live with headaches all day long, and have to go back to physical therapy this Thursday for my neck and shoulders.
I am straining to put together these images, and computer work makes my neck hurt! I have to lean forward and squint a lot.
The disability office ordered me some kind of equipment that brings your monitor up and out to see closer. It's meant to help me see, and ease neck pain. My monitor, however, a 21 inch, weighs too much and it collapsed! Uh oh!
One thing my other eye, although blurry and weird, does provide, however, is a bit of depth perception. For that, I am grateful.
So.... Today?
I have three web projects to complete that I have put off. I should really, really be ready for physical therapy by Thursday, yes? :)
-- Or? Will I run away and hunt for mushrooms instead?
My clients love mushrooms! :)
The forest is always soothing to me, blurry, or not.

October 23rd

I was kind of enjoying basking in my pity party. "Poor, poor, Jennie's eye!"
They found the body of Don Larson yesterday. Another friend casting memories for me. Another soul that will make being on the river mean just that much more to me. Whispering "Hi Don" in the wind, as I fish.
Gary Krum is battling cancer, and is struggling to maintain a balanced pain medication program.
Milton Fischer is another friend that will be greeted on the Nehalem, as I fish past his house, remembering his sunshine smile and warm greetings.
I worry about Ginny and Glen. Glen just had another heart surgery. I hope he is still doing well.
Mike Schoenwald... I met him briefly at the PC ramp, and was looking forward to seeing him many times more, as I fished the Nestucca. It won't happen. Mike is gone.
Last night we received a phone call from a friend battling prostate cancer. He wasn't satisfied with his PSA levels. Time for 8 weeks of radiation. Trips to the office, daily.
And I complain about appointments every week!
Someone knock me upside the head, k?
Yeah, my eye is blurry. It hit me like a rock. I had been basking in letters from friends who raved about what they took for granted. Something as simple as sight.
Well, folks... Last night I had to swallow a big lesson. I have been taking life for granted.
Concentrating on something as simple as my silly eye.
I could live without any sight whatsoever! I could still be as happy as a clam! Take my sight! Take my sense of smell! Take my hearing, but God! Let me live!
Without all of these, I could still fish, still breathe, still love and be loved.
I'm getting over it and on with it.
Time to fish, time to smile, Time to live! By golly, I'm still here!
Life is so very short, and so very precious.
I was rather put off, when my doctor said, "Jennie, compared to world events, this is insignificant."
He was so right!
Another cup of coffee, and a new in-sight into life and fishing.
Thank you, God!
She'sstillfishin.net!

October 29th

Off to Portland to the doc.... It'll be a beautiful drive, right? :)
The vine maples are still just gorgeous!
Interesting, I found a picture on the net, if you click here, that shows... nearly exactly, how I see out of my new surgery eye.
Wow! Imagine those vine maples like this!!! Trippy! :)
See ya!

...You can be upset because rosebushes have thorns
Or you can rejoice because thorn bushes have roses.

 

October 30th

My life, lately, is consumed with medical appointments, so... put up with me, until I break free of them! (Or until it rains and the salmon come in!)
---
"Jennie, not only do I not want to do surgery on you again, I loathe the idea!"
That was the last I heard from my surgeon, regarding the triple vision I am experiencing, before he merrily waved good-bye, and said, "See you in a month or two!"
What? Live with this for two more months?
When I was little, I got hurt a lot. I fell because of the hypermobility I have, from Marfan syndrome. It seemed I was always wounded. I adopted a not so endearing nick name of "tissue paé paé". (In a sort of French accent).
Interesting. After my doctor said he didn't want to operate on me anymore, he said, "Jennie, trying to sew into your eyes is like trying to sew tissue paper together".
I thought that was sort of fitting. Wait till I tell my mean brothers, that they were right!
Just call me tissue paé paé....
I kind of get the idea that this is the way it is going to be. I see triple, and there is nothing he more he can do.
There is an eerie looking prosthesis contact I can wear, that makes me look like a Halloween character. It occludes the pupil, so that it only takes in light from the small pinhole in the center of the contact. It is painted black on the inside, and then painted to look like a real iris on the outside. It's spooky looking. I tried it on. Yuck! It did work, somewhat, I think???
Here is my pupil. Don't look if you have eaten your breakfast. :)

See my intra ocular lens? It is right dab in the middle of the pupil, and therefore, refracts light multiple times, thus, producing multiple images.
I asked him why this happened. The iris sphincter tore--or something like that, during surgery. Oops.
I am so frustrated because it's so complicated! --and... my doctor does not seem to care!
I guess surgeons see this stuff so often, they just get callous, and yell out, "Next?"
There is one surgeon at Johns Hopkins that works on many marfan patients. I sent her an e mail, along with the picture. If she can help me, I'm taking all those mail offers for visas, signing up, and buying a plane ticket to single vision.
It sort of brings it all very close to home and heart for me. If my eye tissue is really this fragile, is my heart tissue also this fragile? Really? Is Andrew's?
Is what they have said about us having an aortic dissection early in life, really possible? Have I lived my life joking that it would never happen, been me hiding from the truth, and laughing it off?
I laugh as I fight a fall salmon, knowing full well that my cardiologist thinks this is poor marfan management.
I'm not to do isometric exercises.
I'm not to lift over 20 pounds.
I do, and I really don't think I'm going to stop.
Fishing is what brings joy to my life.
So? I'll see three salmon on the end of my line instead of one. I guess it's not all bad.
My connective tissue may be like tissue paper, but I'm not... NOT NOT going to let my spirit become such.
Amen, and back to the river I go.

CHAPTER EIGHT
Living with the damage done...

November 4th


Bill Hedlund
21 1/2 pound hen, the Ghost Hole.
Netted by professional netter, Jennie. :)

I can say that I had a bad day, even though we caught this beautiful hen! I can say that, and so will you, after you hear the story.
I arrived home, after fishing much of the day. I had had a lovely day out on the river.
However, I am usually "paid back" after putting things off, in order to fish.
Everything needed to be done! Fish put away, eggs cured, dinner to be made, groceries to be purchased, thank yous to be written, and fishing gear to get ready for the next day (of paybacks!)
I had to have groceries. I called Kilchis, put him in the back of the truck, and headed to Fred Meyers.
Promising Kilchis that I'd be quick, I hurried through the aisles, checking off my items. I went through the regular checkout, and halfway through the exit, I realized:
I forgot thank you notes, and Hollandaise mix! (Yes, Hollandaise mix. Last time, mine was a disaster! I gave up!)
Back through the aisles I went. When I got to the check out they were full. Ah! This new U Scan thing isn't full! I'll give it another try!
Bleep, bleep, bleep! I went through the items, placing them in the bag. I used my debit card. This is simple! I realized I had no cash, so added $40.00 to the balance to take home with me.
Now, usually, the checkout gal hands you your money, right? I have used U Scan before, but always for exact amount debit purchases.
I grabbed my receipt, cheerfully said goodbye to the checkout gal, and left.
UH OH! When I got home, I realized, in my hurry, that I had forgotten to get my cash from the clerk.
I phoned Freddies.
She took my information, rather blandly, and reassured me that they would call in the morning, should their till be over.
"But, I was just there! Can't you just ask the gal?" For some reason, not! She was very unconcerned and impatient.
A few minutes past and the phone rang. Ah! They found it!
Not!
She called to let me know that my $40.00 would have been delivered there, right at the U Scan, in a tray, and hadn't I seen it? Hadn't I seen it??? She was a bit incredulous.
"No, I didn't see it. I didn't see it in triplicate, either."
Since my surgery, things out of the normal don't get seen. Things like road flaggers, and birds, and cash right there in front of me. I began to cry. "Didn't you see it?" played over and over in my head.
"Well," the lady said, "It has been stolen then."
No big. It's been stolen. It's just $40.00! No big! ARGH!
I hung up the phone, and began my work.
O.K., I need to make dinner. So, I lost $40.00. That bites, but I must move on. Hollandaise. I was grouchy.
WHERE WAS IT? I searched the counters, the truck, oh my gosh! I left it at the stand, in my hurry! I had all my other groceries, but that last U Scan purchase stayed right there! At U Scan in the little plastic tray!!!
Now, I did begin to cry. Real, big crocodile tears! I spent 48.95 and came back with nothing but my original purchase!
I dialed Fred Meyers again. I explained what I had done, feeling really stupid, now!
The manager spoke to me this time. I told him the whole story. He finally, reluctantly, agreed he would give me back my merchandise.
Bill, seeing that it was getting dark, and feeling sorry for me, drove the 10 miles back to the store to get my Hollandaise sauce.
When he got there, they wouldn't give it to him! They tried to tell him that I had indeed taken my bag, because if I hadn't, the checker would have been notified, due to the weight of my sale, still being on the scale!
I didn't/hadn't taken my bag! I know that for a fact!
Bill got the feeling that they didn't believe one word of the whole story!
Bill dialed me on the cell phone. "We are not doing business at Fred Meyers." He wanted to know what I had wanted, as he was going to Safeway.
I feel so violated. So robbed! I was robbed! The next guy/gal at the checkout took home my $40.00 and my groceries! Or-- could it have been the checkout girl? If they can be suspicious, so can I!!!
At Fred Meyers, they have new technology that they expect us to learn easily. I didn't learn it easily, and I got robbed 48.95! Is that fair? Their job, at that checkout, is to ensure people get their groceries, and their money. That their transaction is settled and finished, before they leave.
It has become more than clear that they have no intention of helping me in any way.
My frustration over my eye sight, or lack thereof, was escalated to full scale tears last night.
From now on, I wonder if I should just patch my new eye.
Perhaps then, I'll be able to make Hollandaise sauce by scratch, and my check book will be much healthier, and I'll see money, and flaggers on the roads.
Over and out to the Ghost Hole.
Sigh. Things have got to get better.
If U have had trouble at U scan, would you let me know? E mail me!

 

November 7th

"Deflected." Interesting keyword. As in:
The huge pacific weather system that was forecast to hit the North Coast of Oregon has been deflected.

Right?
Or, as Webster explains:
transitive senses : to turn aside especially from a straight course or fixed direction.
I woke up, ran downstairs to look at my rain gage. Oh boy, oh boy, oh boy!!!
.01?!? Point zero one inches of rain? Where did it go? That storm that was supposed to hit two nights ago? Was it....deflected?
I also received an emergency alert this morning for thunderstorms and a high wind warning for tonight. Think it will be deflected too? What a darn protective high pressure! It's strong! It's been around since, what? May?
Enough of the weather worries, I'm off to the doctors office, once again.
Interesting updates... You have no idea how frustrated I am, trying to see in triplicate. It has cost me money, and much frustration. I do wish I hadn't had surgery. I would rather have no sight in that eye, whatsoever. I often patch it. That said...
When my doctor said to me, "Well! See you in two months!" I knew it was up to me, to find a solution.
I could wear the weird looking contact that has a hole for a pupil. Then, I'd have to wear another contact over that, and then reading glasses. Yuck.
I did research on the internet for three days. I finally found this!
Should it be required that every person knows what a Sector Iris Coloboma? Is it dinner table conversation?
That's what is wrong with my eye, why I'm refracting three times, instead of one. Why didn't they tell me? Why did I have to research to find out?
So... Much to my doctor's surprise, I faxed it to him. I did not voice any frustration, I just faxed it with a letter that said, "Can you please perform this "simple" operation on me?
He was out of town. His resident partner phoned me yesterday.
I found more sympathy in this doctor. He listened, he volunteered more information.
I read quite recently that anterior chamber lenses are contraindicated in Marfan patients. My last lens was a posterior chamber lens. From the get go, I had questioned why they weren't going to do the same procedure. You know, it was successful. Shouldn't we go that route? The doctor remembered this... yes.
Anyway, I think I finally got through to him. I think that they are now considering surgery to repair my eye, knowing full well, it might cause blindness. But... it might work too! It might!
This time, it would be a more serious, general anesthesia surgery. I will speak to my surgeon next week.
So, my brain is full of medical stuff, again, that I'd rather not even be well versed in.
Amazing how, in these days, if you want the best care, you must be educated, and learn all kinds of medical terms. I'd much rather not know these things, but I have found it necessary.
People wondered why I kept putting this surgery off. Seems every time I do a "simple" surgery, it goes on, and on, and on.... It's frustrating!
That said, I'm off to Portland with more optimism than I've had in weeks! There is a chance that I will see again!-- My eyesight has just been turned aside from a straight course or fixed direction.!!! --and you know what I'm going to see?
Deflected Rain!!! Deflected Chinook!!! Deflected Storms!!!
Bring them all on!

I am reminded of one of the most important things I've ever learned from the Bible.
"In His Time".
Not mine. Not the doctors. His.
I can wait. :)

November 8th

You'd think I'd want to tell the world! I do! But I don't know how to tell it!
So many people I've spoken to, and I didn't mention it yesterday. So many have written and asked, "So, how did your appointment go?"
Well, it's confusing, and wonderful, and miraculous, and I'm afraid to believe it, but I think I do, but I'm afraid something else will happen, and well... I'm confused!
All I can do is tell you, step by step, what happened!
For two months now, I haven't been able to see. I honestly think I was in a sort of depression about it. Everything seemed traumatic, and unfair.
If you wear glasses, and can't see without them, you can identify, by taking them off, and trying to go about your business. I saw triples of everything, and they were all blurry on top of it. This, combined with one fairly good eye was very disorienting.
Two days ago, I spoke with the resident surgeon who assisted my surgery. I received all kinds of answers, and the thought was that I was going to have to have surgery again. I still may, but...
I panic when I drive lately. I mean, real panic attacks. I have to pull over and breathe. I wondered why. Well, duh! It's simple! I can't see!
So, I asked Pete to help me get to my final destination yesterday. I met him in North Plains. He drove me to the doc.
Having spoken with the surgeon, and coming to the realization that I had to have surgery, I wondered, and asked aloud, "Pete? Why am I going to the contact guy today?-- Why this appointment?"
I found out.
I walked in, and he started trying on prosthesis contacts, with another contact over the top.
I asked him, "What would happen if I only wore the contact that refracts my vision, rather than the prosthesis that occludes my pupil?"
He answered that it wouldn't medically work. That my vision would be clearer, but I would see more clearly the three images that I see blurry, and that it would drive me batty.
Nonetheless, he let me try it.
I was stunned.
"Doctor? I can see!"
I opened the door to his office and escaped to the window, overlooking the parking lot. I went nuts!
I saw, like I hadn't ever in my life seen!
"Pete! There are pine needles on the tree! Pete! Look! Pine cones!" I had never seen pine cones in a tree! EVER!
I stood in the parking lot. The same parking lot I have driven to for 15 years, and noticed a bridge. "Pete, is that a bridge?" It was! The Ross Island bridge, and I counted cars on this bridge! I saw houses PAST the bridge!
Everything was vividly colored, from the white white of a wet, rain slicked automobile, to the bright yellow of a warning sign. I could read the letters on them!
I did not see in triplicate! I saw slight "ghosts", but combined with my other eye, they seemed to melt in better than before.
I ran down the hall, touching things, looking at detail, at little white flecks in the parking lot asphalt, I studied the texture of the walls, the weave in the carpet, the electric colors! WOW!
I finally went back to the doctors office.
"I'm cured!"... I think.
He let me go home, with both the prosthesis and the contact. For now, I'm going to just wear the contact.
I have to ease into it, though, and wear it only 2 hours the first day, adding an extra hour each day. By Sunday, I can wear it all the way to Astoria to church and back! I can't wait!
I so hope that it's going to be true! I can't really believe it, and I'm so frightened that something will happen.
On, the way home, it hit me, and I cried.
As I stared at the neon brightness of "flagger" signs, and the beautiful golden colors of what remains of fall, I realized it. Please, don't make fun. I believe this with all of my heart, and I was embarrassed I hadn't given credit, where credit was due.
My Christian friends had told me that God could heal me.
Oh, me of little faith.
I argued. I showed them the medical truth, obvious to see. Visually, they could see it too! My iris was torn, and my pupil all screwed up. What? I thought bitterly. Was God going to step up, and one morning I would wake up, I'd look at my eye, and it would be all sewn up? RIGHT.
The doctor cannot explain this. There is no medical reason this contact should help me.
I had to pull over. Had I been healed? "Is this God's work?" I phoned my sister and asked.
"Duh!" She said.
Thank you God! Whoooo hoooo, and am I ever in your debt! :)
Today, I get to "see" for three hours of my choosing, and I couldn't sleep last night trying to figure out which three hours I'd choose.
I've picked the first one. I'm going to put it on before I take David to school. Then, I'm going to drive to Bay City to watch the waves. I'm going to see them, you guys!!! I'm going to see the fluffy tops of rolling white, powerful water, complete with lacy, foamy spray!
Then, home to see the river. Will I see it better? Will I see fish? Then, to my computer... then, to see if I can see birds better, then to hunt chanterelles, then... Oh wait. That's too much time!
Dang this is hard to wait to see!
Anyway... I am thrilled, excited, renewed and pumped!
I am still guarded about this miracle. But for now.... I have three hours of sight. I have some planning and thanking to do!
I think back to my losing $40.00 in the U Scan... That's a pretty fair price for sight.

November 11th

I've been really busy "seeing." :)
I don't know how you people do it! Do you know how inundated with information you are?
I read somewhere about how many minutes per day we are inundated with advertising. It's true!
Now, with my new sight, I am seeing so many things! There are stores in Tillamook I had no idea were there!
I'm a fanatic with signs now. Signs, signs, everywhere! Road signs that I never could read!
I drove to Astoria yesterday, and learned little road and lane names that I could never read before!
What's strange about it, is that I find I have to say them out loud as I read them! I was talking on the cell phone while driving, (I know, that's bad.) and kept interrupting my friend by inserting "curves ahead, 45 mph.... yes, and there are 15 boats out in the Ghost hole, no fish on... McNamee Lane.. Oh yes, Andrew is fine, and he is doing well in class... STOP!"
My definite favorite are stop signs! They are so bold! They are so... red!!!

November 23rd

I just got in from fishing, feeling quite like a healthy, normal kinda girl.... when my eye surgeon called.
You know, I had many questions about my surgery, and felt compelled to research what had happened, myself. I learned many things... Too many, really! I know what an "Sector Iris Coloboma" is and you don't! :)
Anyway, I was so glad to talk to him. He had time to discuss things with me. However, now I am left feeling fairly fragile, instead of the girl who was out, just this morning, standing thigh deep in swift current, holding a Kwikfish and waiting to battle a salmon.
He said, "Jennie, of all the Marfan patients I have worked on, your eye was the most fragile I have ever seen. Your eye tissue literally fell apart as I worked on it."
Now, that is a visual I could have done without!!!
Perhaps that is why he had told me earlier... "Jennie, not only do I not want to do further surgery on your eye, I loathe the idea."
Today, he further noted that the eye he had fixed for me 5 years ago was much stronger and more resilient than the eye he just attempted to work on.
What he said next brought shivers to my spine.
"Jennie, what I wonder, is if this last eye has always had weaker connective tissue, or has all of your tissue deteriorated in the last five years?"
Something I thought would never bother fleetingly spooked me.
Is that organ that so strongly pumped blood, and has enabled me to live, to have children, to laugh, to play, to fight salmon, to bring in a large sturgeon.... Is it weaker than it once was?
Everyone knows that people with Marfan Syndrome are at a high risk for aortic dissection.
Everyone knows that, but I have chosen not to believe.
Doctor... I think that my other eye has just always been weaker. Let's just go with that!
All these years I have bragged that the doctor told me I would die if I had children. I had two! They said I would be gone by age 35. I am 42!!!
Despite a fleeting moment of fear, I have decided to forget our conversation this morning, and go on defying the odds.
I'm going to be out this afternoon.
Out in the water, holding a Kwikfish, hip deep in the Kilchis river, waiting.... with a deep appreciation for life, for nature, and for all that breathes, and swims and surrounds me with profound and beautiful life!
Dang, I love to fish! I have to hurry up and do it!!!
It kind of surprised me that as I wrote this, one single tear fell down my cheek. I don't think it's out of sadness or fear. I think it is just another 'kick in the rear' reminder of how much I really, really do love life, my creator, my family, and my river. :)

--------------

CHAPTER NINE
Followup...

Alright. Enough copying and pasting for the day... I will continue from here on, with my thoughts, and followup about this whole mixed up, weird, never to be wrapped up and finished experience. I waited until February of 2003, to try to sort out my troubles. I will pick up my story, there. I'm just tired of copying and pasting, for now! :)

Fast Forward to February when I decided to get on track again. How many times have I decided to get back on track, and get this thing fixed? Numerous. I cannot count the times.
I wrote:

February 15th

This is intense and frustrating for me to write, but I have to see if I can get it straight. The doctor says I know too much about medical stuff. I wonder why?
Maybe I could skip the first two years of medical school, and rush on to do my own surgery? I think I know enough to get me into trouble! Cool! Look! I can buy my own Iridectomy scissors!
Doctor's appointment results:
Doctor Macaluso, at Casey Eye Institute, decided that he agreed with another doctor that the surgery I had in the Fall pretty much replaced one dislocated lens, with another. The IOL, (or intraocular lens) that they placed is not in proper position, therefore, I am "seeing" out of the very edge of the lens. It's not lined up with my pupil. This is causing the refraction of light, several times, which causes me to see many images in color, and ghosting. If I hold my hand out, I see 15 fingers and drop shadow effects. That's a lot of fingers! However, my brain is still learning to put these images together. The only real frustrating and still challenging part of my life is tying knots for fishing. When I grab the coffee pot, I have learned which image is the real image! With my other eye, it all seems to come together well enough for me to function safely.
So... the original Doc isn't looking forward to fixing it. He referred me to Dr. Macaluso. The operating surgeon said my eye falls apart in his hands, because of the Marfan Syndrome Tissue. Especially breakable, is my schlera. That is where they would make an incision, should they have wanted to go in and try to shift the lens. He doesn't want to, at all. Too risky, he says.
Quote from old doc: "Jennie, not only do I not want to do surgery on you again, I loathe the idea!" That's pretty straight forward, to me.
I could fly to Johns Hopkins, and get my eye fixed by the professionals who do Marfan Eyes, but I can't afford it. Dr. Maumanee there, is my "Marfan eye" hero. I wish, (so wish!) that I could go there.
So, Dr. Macaluso said that he could try to go in with one single incision, through my cornea, and try to lift the lens. By going through my cornea, it wouldn't be as delicate as the schlera, and hopefully wouldn't fall apart. Then, he would sew up the iradectomy, (when doing the original surgery, my iris tore, which also lets in too much light.)


ISH! That's me eye!
They call it a key hole pupil. See also, how the lens is not centered with the pupil? It's SO obvious, and the original doctor didn't seem to want to explain what happened to me! I kept asking him what could have gone wrong. Well, duh! Look at it! The lens is supposed to be centered on the pupil. I still don't understand why he couldn't just tell me??? Was it ego or ugo? Like "ugo" out the door and I'll start on the next patient??
I asked the new doctor the 5 million dollar question. "Doc, if it were your wife, what would you tell her?"
He replied, "Well, I'd say, honey..."
Then I told him not to call me honey! I did! The nurse, the doc and I all had a good giggle!
Anyway, he said that he probably would recommend it, and that there is an 80 to 90 chance that it would be better. Of course, we don't want to talk about the other chances, now do we?
I asked, "Have you ever worked on a marfan eye?" He said no.
I asked, "How do you feel about it?" He said, "A bit stressed".
So, Jennie, I ask myself.... do you gamble for better vision, or do you thank God that you can see to even be able to be writing this? --Or do I debit all my credit cards and run off to Johns Hopkins?
Don't get me wrong. I'm not confused. I know exactly what to do.
Kilchis!!!!! Let's go fishin!
----------------

I'll search through, but I think that I was too afraid, and dropped the ball, after that. I was nervous about Dr. Macaluso, and the fact that he had never worked on a marfan eye. Regardless that the surgery wasn't too invasive, I just felt, well... not as confident as I would have liked. I searched through, and in May, I said once again that it was time to start fixing the problems with my eye. I did not follow through then, either. It's been a long and procrastinating adventure, trying to get up the courage and know that my time for anything fun, will be gone... when I decide to do something about this!
I will finish this, yet! Not only the story, but by the time I'm done with the story, I want my eye to be fixed!
Oh! I did mention frustration in January, here:

I sincerely don't know what is going on, but for some reason I can't see very well. I mean, worse than usual. It's so frustrating! Everything is blurry.
What is interesting, is that it has been heavy on my mind, as to whether I should seek a surgeon to do surgery on my eye, and whether to stay here locally, or fly back East, where they have experience with eyes such as mine.
My doctor, Dr. Robertson, is no longer doing surgery at Casey Eye Institute, so there goes that option. Not only that, but when I asked him if he'd do the surgery, he said, "Jennie, not only do I not want to do surgery on you, I loathe the idea!" I think he was pretty clear, don't you? He told me when he did do surgery on me, my eye literally fell apart in his hands. Yip, that would cause me to pause, also.
So, I find myself with no eye doctor. I haven't had my pressure checked in ages, and I think I'd better start shopping for a doc. Sometimes, with marfan, you just tend to let things go, unless something happens. Well, something is happening.
I first noticed it a couple days ago, when trying to tie a knot. I sat there in the cold and snow, studying the eye(s) of the hook. There were five of them! Which one do I thread? Usually it's slightly frustrating, but never 5 eyes of hooks! Geesh! That's alot of eyes!
I wonder how many hook points I was fishing with? The same? It can't be all bad, though... You know, when I catch a fish, I catch five, too! You can limit out really quickly, that way! I also have double rods, reels and rivers. Life is grand, right?
So, as I sit here squinting at the page to try and read it, I am convinced. Tomorrow starts the hunt for a new doctor who likes a challenge. One that will say, "Jennie, not only do I want to do surgery on you, I LOVE the idea!"
No, wait-- that would scare me!
Anyway, HHaappppyyy NNeeww YYeeaarrss to all-- May this year hurry up and bring duplicate springers, (without duplicate fins) to your net!

and on the 27th...

January 27th

I have bad days, also. Sometimes in triplicate. Sometimes worse than that. I thought I was sick, then I knew I was sick, then I got hilariously happy because I was all well, and then I got sick again.
On top of that, yesterday, ifish's mail server got attacked. Well, at least via the form. Some trouble maker that we kicked off ifish decided to retaliate. Problem is, this fellow is also known to use guns in less than moderate situations. Do I really want to catch him and have him reprimanded? Or, do I want to just say, 'Oh! That's OK! Please feel free to flood my mail server, anytime you choose!" I spent some time trying to trace him down. I sent the results to the higher powers, and they will take it from here. God, save me from the goofballs of the internet world.
I was a good girl, and finally got ahold of the low vision clinic. I was feeling quite proud of myself to be actually dialing the number. I was intent on making an appointment for both myself, and my son, Andrew. However, it turns out that he will not see us until we both have had an annual exam. "Oh! That's not hard! I just had my surgery, what was it... TWO YEARS OR MORE, AGO?" Oh. My. Gosh.
I have been very lax in my eye health. Oh, yes indeed. I think, after a traumatic experience, like I believe my eye surgery to have been, the tendency, no matter what the results were, to say, "Oh! I'm Fine! Please don't contact me again!"
And I didn't please to contact them again, either, obviously. Until Monday.
The problem is, I have no ophthalmologist. I went from a glaucoma specialist, because of a hole in my eye, to a retina specialist, for my surgery on my eye. My retina is fine, but he was most suitable for performing a specific surgery. After my surgery, I was left seeing double, triple, and quadruple fish on my line. Yes, that is right. I try to see the good in double-double vision. More fish is a good thing, right? Anyhow, he said my eye literally fell apart in his hands, and he could not fix that. (I have repeated this phrase before, on ifish. Can you tell it grossed me out?) So, he sent me to another specialist, who had never worked on a marfan eye. He wanted to do an experimental fix on me. "Oh great! Let's experiment with Jennie's vision! NOT!" My glaucoma doctor won't take me back, because I don't have glaucoma. My retina specialist won't take me back, because he has been promoted to Dean, and is no longer seeing patients.
So, who out there is my new optho? Who out there knows anything about delicate marfan tissue? I know! Dr. Maumanee at Johns Hopkins! It's just a short shuttle to and fro! See ya in two weeks!
In all seriousness, I am going to call Andrew's very good and kind optho, who is a children's eye surgeon, (Dr. Goodman in Lake Grove) and she can probably recommend to me someone with marfan experience.
..and watch this, ladies and gentleman. I'm dialing right now! Not putting this off, any longer. I need to be the best that I can be, and see the best that I can see! I'm proud of me for taking care of me! (dial, dial dial...)
... and then, no more work for a while. I'm going fishing out back with Kilchis and Molly, sick or not! I feel so weak, that I need a cane, but I'm going down there and no one can stop me! ... and if you try, you better watch out! I have a cane, and I know how to use it!

...and then, an appointment!

January 30th

Well. I can't believe I am finally going to an eye doctor. I wonder what they will say. He's supposed to be a good doctor. Dr. Stout? I think that is how they spell it. He's at Casey Eye. Everyone says he is nice, warm, gentle. I have yet to meet an opthamologist that is warm and gentle. They all seem antiseptic and scientific. We'll see....

January 31st

I like my new optho! I do! He's understanding! I have to absorb a little bit of where I'm at with this, but for now, I'll just say that I think I'm headed for surgery, soon. I think my doctor is human! I think he has compassion, and hasn't been eaten up by the "bring them in, give them drugs and bill them" disease. He actually looked intently, and directly into my eyes, and listened. He was interested! What a relief that is, when you walk into a new doctor and know that you have 40 some years of history to explain. I noted that they had not transferred my mile high records I relieved him of less history than that, but he listened to what I felt was pertinent. He was thoughtful and compassionate. I have an appointment in a month with a surgeon, who will hopefully explain to me what I need to know, to proceed. Now, I just need to follow through. I have a half trust that I will do that, and not put it off.
I wonder if there is any doctor at Casey that I haven't met, now. Dr. Stout said, "You get around, don't you?" Yes, that's me. Everyone knows Jennie, or at least "Jennie's eyes." I guess it's no wonder that an eye doctor would look you in the eye, now is it?

Finally, in March, I decided to make the appointment, with Dr. Maculoso, and get the surgery done. At my appointment with Dr. Stout, we discussed this, and he advised me to make an appointment with him, to have it done. I did that. The appointment was supposed to be with the two doctors at the same time, so they could discuss things. This brings me up to the present, and I will write about my experiences in the next chapter.

September 15th, 2004

I never did finish this. Let me just tell you the anticipation I felt for this combined, two doctor appointment. I had finally worked up the courage to do this! Knowing full well that whatever the surgery did, may well be worse than what I see, now. I had made the decision! I drove to the appointment! I was SO excited that I had finally, after all of this time, followed through and made the appointment!

So, on April 14th, 2004, I drove to Portland to see the doctors, together... to decide when, where, and what, exactly.
When I got there, I was trembling. Should I leave? No. I was there, and I was going to stay. I could always back out later, but that isn't what I wanted to do. I want to see! I really want to see! Perhaps if I could see, I could read music again, without pain!

I walked up to Dr. Stout's office. "Oopsey" they said. We didn't make a double appointment. You'll have to go see Dr. Macaluso, first.
It was right there and then that I started to worry. I had spent over an hour on the phone, multiple times, trying to get a conference appointment for this. I had no clue why they'd flunked this duty.
Down to Dr. Macaluso's desk I went. I waited, and waited.... a half hour passed. I waited.

FINALLY I WAS CALLED IN!

O.K., I thought. He had spent an hour with me, previously, explaining, with a computer image he had created just for me, to explain the non invasive procedure that he and Dr. Robertson had thought up, that would either remove my implanted lens to remove the double image, or to try and lift the lens to the proper location. If that failed, like I said, they would simply remove my artificial lens.

Dr. Macaluso looked at me, as if I was a new patient. Low and behold, I got the feeling he did not know who I was at all! He began to explain to me how he was leaving Casey Eye institute, and was not taking on new patients. "WHAT?" Why was I there? Why had I driven in total excited anticipation to this visit???
He asked about my health. He asked what problems I was encountering. It was very clear he had no clue who I was!!!

Tears welled up in my eyes. I couldn't help it. I was so totally distraught!

I have been told by almost all of the Casey eye doctors that I am well known there, to be one of the most difficult patients, as far as fixing my eyes.

I did not take the time to explain to him that he had seen me previously. He obviously had "short timers" and had not done any homework on my case. In fact, they had to look for my file when I arrived. There had been no homework done, at all.

I looked at Dr. Macaluso through teary eyes, and said, "There is no point in my being here." I walked out of his office, stopped by Dr. Stout's office and told them there was no need for my appointment, today. I did not rage. I did not ask what they had been thinking. I did not yell, scream, or rage, like I felt welling up inside me.

I simply walked to my truck, shut the truck door, and sat in the parking garage and sobbed.

Not only had I wasted a whole day driving to Portland, (which is tough on my vision, and tough on my neck and shoulders, due to stress, trying to see...) but all of the courage that I had worked up to actually do this, had vanished.

I simply had to start from scratch. New doctor... somewhere? New plan.... somehow?

Instead, I chose to put the whole thing on the back shelf, and to this day, I still suffer double vision, and neck and shoulder pain, trying to see, all of the time. I must admit, I have somewhat adapted to seeing multiples of things, and my brain is learning to put up with it. I KNOW there is only one fish, so my brain tries to minimize the shadows.

Last week, I was able to summon the courage to see a doctor, again. This time, mainly because my right eye is leaking fluid, and I am worried that my bleb may be leaking. When Dr. Stout called me, I talked to him about this. However, I also brought up my disappointment over the last visit. After my explanation of frustration over it, he profusely apologized, and promised to find me a new doctor.

Jennie, meet Dr. Mathers. I have an appointment on September 28th, and one in the low vision clinic on September 24th.

Here we go, again.

April 25th, 2006

I'm ready! I'm starting to roll the ball, again, towards fixing my eyes. I just called Dr. Mathers office. I had an appointment all set up for pre surgery, and my aorta totally dissected! So, I had to, of course, put it off until later. For some weird reason, I haven't been in the mood for surgery, since then. It was quite a trip! 10 days in the hospital, and over a year of recovery. I'm still not what I was.
I called, today to start the ball rolling. I'm not able to wear either my old contact, or my new contact that I ordered. They both hurt my eyes, no matter how hard I try to wear them, and how patient I am, regarding hours of use. They are just really painful. I'm worried that the shape of my eyeball has changed, over the time between my dissection, and now. They were out of the office. I left a detailed message, and will wait to hear back! Here we go!

September 4th, 2006

I've yet to come up with a solution and frankly, it's really scary! My knot tying is comparatively awful. I can't see at all out of my left eye, now, and it frustrates me to no end. Not only that, but I'm stubborn.
Sure, Bill will tie it for me. But, I won't let him. I've got to do it, myself... somehow! There has GOT to be a way.
If I'm by myself, just what will I do? I've got to plan for the future. If I give up and have Bill do it, I'll never figure it out.
I can't buy pre tied flies on line! I can't buy a tippet pre tied to my line, for gosh sakes!
As long as Bill is around, I'm fine, but what if I'm alone?
I've tried magnifying devices, but the problem is that I see double and triple. Magnifying duplicates of things just makes it worse.
I've learned to do some of it by feel. I can tie a fly on pretty well. Even with small flies! If the light is just right, I can do it. I have to pick my times to fish by light. The problem is, the fish like to bite at a very poor fly tying light! Just as the sun comes up, and just as it goes down. The fish I catch, are mainly day fish. :)
I'm forever envious of people that can tie on fly after fly, and especially at dusk! I'm sure my fishing would improve if I were able to change flies as often as the hatch changes. But, I just fish with flies that work often. I've found that a Spruce fly will work most of the time on the Kilchis. So do brightly colored 'anythings'!
One thing' it's hard to tie 'sightless' if you have calluses on your fingers. You have to be able to feel even the slightest piece of leader off your fly. So, I take a pumice stone to my fingers in the bath, to make sure my fingers are tender and soft. There will be no poking leader sticking out on my flies! No sir!
What I can't do, though, is tie on a new tippet. You know, tie one line to another. Can not do!
So, the other other night I noticed I only had 6-8 inches of leader left. Not good for low and clear. Not good at all! Each time I cut off a fly and tie on another, I lose a bit of leader and I know that the time is nearing. That terrible time when I need to tie on a new one.
My first thought is, "Bill! Help!" But NO! I won't do it!
So, last night as the sun was going down, I sat at the table with an open book of different kinds of fishing knots. I was desperately trying to find one for blind people! One that I could do with limited vision. If only I could figure it out. There is the blood knot, where is the blind knot? (laugh)
I was so frustrated. I had tool after tool that I had been given, trying to perform the task with my eyes closed, just to prepare for a future that I very well may soon have to deal with. It's bad enough, now. If it gets any worse, I'll be there.
I do not like this helpless feeling. I do not like it one bit. But, I will deal with it!
I can see distances without the double vision, but close up, it's just awful. I sat and stared at the ends of my line, of which there appeared to be at least 15! It's so frustrating! A blood knot is difficult to tie, anyway.. but with duplicates of 15, it is impossible!
I lost my patience, tossed down the line, the straws, the tools, and I went to grab my other fly rod, of which I had at least a foot of leader left. Bill kept saying, "Jennie, let me do it!" But, Jennie would not!
I pulled my rod down from the rack. "For tonight, this will have to do."
Leaving my frustration behind, I lay the other rod down, and left my tippet less fly line strewn carelessly over the picnic table. I walked down to the river to fish.
My mind was still racing with ideas, but I tried to hush them with each cast. I closed my eyes during the cast, and opened them just as my fly landed. It landed the perfect distance, and laid out beautifully quiet. Ah... I can do this, blind or not, like a pro!
It was just the other day that I sat on the rocks in tears. I was having a spell of not seeing well at all. There are times when my sight clouds over, and black spots fill my field of vision. My doctor calls it an ocular migraine. I call it hell.
I was with Bill, and I thought I could fish, anyhow. Knowing I couldn't see and that I needed to rely on my other senses, I first went through the process in my mind. After I'd practiced in my mind, I began. I did OK the first cast, and began the retrieve. Ah! Success! No fish, but a perfect cast and retrieve!
But, on the next, during the back swing, my hook caught a rock and let go, resulting in a mass of tangled leader. I retrieved it and held the mass of tangled line in front of my face, and the two single loop knots appeared to me to be a thousand circles of messed mono. As I stared at it, I began to cry like a baby! I was so frustrated! I failed the braille fishing test!
I hadn't wanted Bill to see me, so I grabbed my walking stick, and tried to head back home before I was caught.
He yelled at me to stay, but I kept on, like I didn't hear him.
I made it over the rocks, and began to try to follow the shaded tree line to the trail. Do you know how similar the shaded tree line looks, when you have only light and dark to guide you? I could not find the trail! I was walking into tree limbs! I began to panic, but just then, Kilchis came to my rescue and headed up into the trees. I followed, and sure enough, it was the trail! Thank you, Kilchis! I had made it home!
It is possible, and I will find a way, a tool, something to help me tie those tippets to my mainline.
And the other night? When I left my tangled failure of line on the picnic table? Well, when I got back, my rod, my line, my mess was all gone!
Confused, I walked into the house, and there was my rod, with all of the other rods, hanging neatly where they always are. And on the end of my fly line was a neatly tied brand new tippet and leader.
Bill couldn't help himself, and you know? I wasn't upset. It was beautiful, and so much better than I could ever do!
Thank you, Bill! I really don't know what I would do, without you!

September 26th 2006

This morning it was dark when I got up, and I took the dogs out to do their duties. By chance, I looked up at the sky and it was chock full of stars. It was so beautiful! What was even neater, is that I had no glasses, contacts on, and I could still see stars!
I have a thing about stars, ever since my son who was blind at birth, had his first eye surgery, and the first thing his brain taught him to see with those new eyes, was stars.
"MOM! There are stars in the sky!!" I'll never forget that, and the excitement I felt. If you want to read about it, the story is here. Scroll down to Chapter One.
And so, today we move on to "All my eye surgeries" Chapter bazillion.
Last I left off, I was scheduled for eye surgery and well, the date of the surgery I was in surgery for an aortic dissection. I'll not forget Bill canceling the appointment, or telling me that he had, after the fact. You know, I really don't see why it was cancelled. As long as I was out with my chest open, I might as well get other things done. You know, eye surgery, perhaps wax my legs? A new hairdo and a pedicure? Come on, doctors! Get with the program!
They did a darn fine job on the incision on my chest. I can even wear a swim suit without looking like it has a zipper on it! (Well, almost!)
So, it is with a little bit of worry that I drive to my appointment, today. What will happen this time? I'm not in the mood for heart surgery! That's for sure!

Last May I left off with Dr. Mathers saying that he would visit with my old surgeon, who last worked on my left eye. He said he would get back to me.
That last eye surgery didn't go so well and when I inquired about having it 'fixed' my old surgeon said, "Jennie, not only do I not want to do surgery on you again, I loathe the idea. Your eye fell apart in my hands!"
Ish! But, that's what marfan tissue is like, I guess. It's like trying to sew a sponge together. It just keeps breaking through.
It's no fault of the surgeons. In fact, he is a very good and respected surgeon. He is now the head of OHSU! His name is Dr. Joe Robertson. He fixed my other eye and he brought my son Andrew from total blindness, to sight. I hold him in high regards.
The surgery he performed 3 years ago on my left eye began with taking my lens out. --and everything else. I had a vitrectomy. He then put the lens in the capsule in front of my eye. Therefore, there was no need to sew it in like he had in my right eye. My right eye has one sewn into the back of my eye. (With mono! I love that! I wonder what pound?) I'll never understand why he did it differently this time... but I'm not a doctor.
Anyhow, turns out the lens was too small, and in the end, it just wasn't successful. I had traded one dislocated lens for another one.
The IOL he put in (intra ocular lens), being too small, bounces around and irritates my cornea, which is already delicate. (Tissue pae pae, you know!).
Also, during the surgery, my pupil was torn, so it lets in too much light, and I see duplicates of things. Up to four times, sometimes! Now, that's fun! Especially when I have a big fish on! I'm known to yell, "Bill! I have four fish on!!" That is so cool! Not many people can do that!
But, I have been having trouble wearing my contacts for the last year. It hurts! Well? That's why! My cornea is "pae pae!"
It's good to find out why. It was very frustrating to me. I am more than legally blind without them. When I drive, I just put them in anyway. Pain or no pain, I have to drive and I have to SEE to drive. People like it when I can see, while driving.
Yesterday, after tearing my contacts out, the minute I got into the office, Dr. Mathers said that I need a corneal transplant. Actually, in both eyes.--But we'll start with the left.
The left one has been bothering me lately. For the first hour or two when I get up, I can't see. That's why.
So, if I want to... if I think it's worth the chance, if my aorta is stable... here is what we'll do.
(drum roll)
I'll go in for surgery, and first have my lens removed. They'll simply make a small incision and pull it out. (I want to save it! Remind me to ask him!)
Then, they'll go into the back of my eye and sew in an IOL onto the sides of my eyeball. I have no muscles to hold it in, so they sew it in.
THEN, they'll stitch that up (real tightly, please!) and see about the corneal transplant.
Thing is, they are doing a new, much easier corneal transplant these days and it won't be that bad, I guess.
24 hours flat on your back doesn't sound fun to me, but seeing does! :)
Of course, there is always danger in these operations. There is a chance something will go wrong with a normal person. With marfan, it is extra tricky and critical.
I wasn't happy to hear about my cornea, but I swore I wouldn't cry about it. It was rather shocking, though. I mean, I went in to find out about my lens. I thought it was a fairly simple thing. I had no idea that corneas were weak on people with marfan! I had no idea something else was significantly wrong. That came as a total shock to me! I really didn't need anything new.
First thing out of there, I thought, "Ice cream!" I needed ice cream and I need it badly. I was given 10 dollars worth of Baskin and Robins ice cream certificates a year ago. They were still unused! I drove into Baskin and Robins and got two quarts and some dry ice for the drive. Jamoca Almond Fudge and Pralines and Cream! Ice cream heals all wounds, doesn't it? I think so! I was pickled tink!
I was thinking about staying over, but I was too bummed. I called my sis and luckily, she wasn't home. She makes me cry when I tell her things. I left a message. In the message I bravely explained my dilemma and stated, "I'm not going to be wimpy." I called a friend, and mostly got through that conversation, too.
By that time, I was nearly at the end of the cell zone, and headed up the mountains, back home. I thought, "Oh boy! If I can get past the cell zone, maybe I can cry all by myself and no one will ever know! There is nothing like a good cry and ice cream!
All of the sudden, my phone rang. It was my sister.
I got through one sentence and just totally broke down!
"You said you wouldn't do this!" Teri said.
I laughed and dried up before the conversation ended.
I did alright all the way home, too. I stopped to half heartedly search for chanterelles. Mostly, I just enjoyed the bright sunshine and the smell of the old growth forest. Beautiful purple flowers hung from one tree and it totally memorized me. I love to see! You have no idea!
Now the time has come to decide. Do I want to fix my eyes? Do I want to continue to see things as stunning as those purple flowers? -Or the meadow that stretches out before me, today, lit with golden sunshine that tips the trees?
I do think I know what the answer is, and it's clear that if I don't do something, my vision will gradually fade. But if I do schedule it, when?
When in between fishes is good?
Probably during hatchery steelhead season. The Kilchis river is quiet, then. I think that's when I'd most likely like to be down. Down for the count...
You know, actually... I'm really getting tired of seeing four salmon, when I only have one.
It's really a drag, too. My tag fills up awfully quickly that way!
I think I'll do it. I just think I will.

November 8th 2006

~~~~~~~~~~~~~~~~~~~~~~
NOTICE

Please forgive. I am typing by feel. I have lost my vision, and am headed to the hospital. I am so glad that I took those pictures last night. I studied them and saw them so well. Anyhow, I won't be updating nor answering e mails for a while, I'm afraid. I sure hope this typing is alright! I'm doing well for not seeing! Anyhow-- Off I go. Please say a prayer for me. I am really scared. :( My vision just clicked off, as fast as can be. It was so scary.
Bye bye--
Oh yeah-- long drive to the hospital with 6 closed. All the way around. sheesh.

November 11th 2006

I feel like wearing black, to honor the loss of my eyesight. No kidding. I am sad about it. Not only is it confusing and terribly difficult to work, but it is a loss for me. A sad thing. I miss it terribly.
Every time I lean over, my lens that came loose, slips back into place and it makes me smile. I can't help but exclaim! "There it is! I can see!"
Too bad that the world isn't upside down, though. If it were, I'd be good.
Funny, though, how my will keeps me going. I think of all kinds of creative things to do, to try to get along. I begged Bill to put the TV upside down so that I could stand on my head and watch my favorite TV show.
As long as I'm face down, I can keep my lens in place. So, I thought I'd get a massage table. You know, with the hole for the face? And then put my laptop on the ground to work. Aha! That would do it!
But, it never works out. I just can't see. It just isn't right.
Ifish member and opthamologists "eyefish" helped me out so much, yesterday. I just thank God for him! He wrote my surgeons a list of surgical options to consider, and to talk with me about. I so appreciate that. He also called ahead to a local optometrist to help me with visual aids, until I have surgery. It has helped. It isn't wonderful. In fact, it's awful... but it helps!
The lady optometrist was so caring and so nice. I wish that all doctors could be that way. She took so much time talking to me, helping me, listening to me. Another angel from above!
I'm so distressed that my surgeon that is to work on me seems so cold, distant, and matter of fact. It would be nice to have a surgeon that could talk, face to face, and have more than 5 minutes of time for patients. My optometrist yesterday had a wonderful idea! I would like to get a program started like she suggests.
Surgeons are terrible pressured and busy, so why not have a hired helper to sit, explain things, listen to your concerns and to relay information that the surgeon has no time for? What a perfect idea! I would adore that, and I am going to call the hospital to see about starting something like this. That would take the pressure off of the surgeon, and help the patient, too.
Anyhow... I promised Bill that I would try to fish, today. (River permitting!) I'm almost hoping that it's too strong, too dirty, because I am afraid. I can't walk very well because of my sight. I'm so afraid I'll fall, or someone else will be watching and I'll get my line all messed up, or cast somewhere awful, or mess up handling a fish.
I'm blind, and that's hard to swallow, let alone have someone watch me swallow! I'd just as soon hide in my bedroom, thank you.
But, no. I'm going to live... every moment, I'm going to live. Life is so short... and I'm not! I'm very tall and it's time to stand tall. Just watch me... go ahead! If I cast into the bushes, I'll just laugh.
Here goes.....
Do know, though, that I am behind on my work. It is really hard to see my e mail, and the board, and well, my computer screen. Be patient with me. I'm trying!
This is the song, that I hear, today....

When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou has taught me to say,
It is well, it is well, with my soul.

November 12th 2006

I get criticized sometimes for writing only about all the beautiful things in God's world. You know, the little birdies and the trees and the thousand colors of greens in Spring.
Today, I'm going to try to write a solid "how to" article on fishing for the handicapped.
Today, we are going to discuss how to bank fish for salmon, with a dislocated lens flopping around in your eye. I hope someone finds it helpful. Although many of you can not relate to the experience, perhaps you can pick off a few tips, anyhow.
After all, I live on the banks of the Kilchis river, and if anyone has experience bank fishing, it's me. So, listen up, and learn!
Let's get started.
Safety First!
Remember to always wear your life jacket!
Admit it. It can happen to anyone. We are all at risk, but the visually disabled, even more so. It is important to wear a life jacket if you are fishing while blind.
Bring your 2 way radio! I find it helpful to always have communication with someone inside the home. If I have a fish that's too big on, or that I can't handle, I can simply ask for help. Also, make certain that someone capable of pulling you out of swift rapids is on the other end, and not too busy playing video games to care.
Currently, and I hope not permanently, I have no vision. Without my "seeing eye Bill" I'm lost. My left eye was scheduled for surgery in January, as my cornea is wearing thin due to an intra ocular lens that was too small. With this eye, I see duplicates of up to 8. No one wants to fall into 8 rivers. Just as I was preparing for this surgery, my right eye dislocated it's intra ocular lens. This leaves me with one incredibly blurry eye, and the other one blurry times 8.
However! I can see if I lean over! So, follow along!
Now, before I leave the house, I put on my hip boots and my life jacket.
I fill one pocket with pliers, 2 pairs of glasses, (one for long distance, and one for near) a jar of eggs, scissors, an extra leader, and an extra bobber set-up. In the other pocket, I fit a kleenex, my favorite fish catching lipsticks, Marie's scents, latex gloves, warm gloves, and a hat, just in case.
Remember to put your hip boots on first. Once you fill your pockets like I do, you won't be able to lean over.
OK. You are ready to fish! Call the dog, and let's get started on our adventure.
Raise the garage door! Twice now, I have run into the darn thing on my way out. This hurts and can easily be avoided by the garage door opener. I've got that one down, now.
Just empty your pockets and get out your far sighted glasses. There's a button on the wall!
OK, we are now through the garage door and crossing the lawn. I can't travel while wearing glasses, because with these new fangled glasses, you can't tell how far down the ground is. Put those away. They won't help anyone.
The river is getting closer, but we only know that from experience, and from the sound of it. If you really need to know how far, stop, dig out your glasses again, and look. This takes up a bunch of precious time, though, so I don't bother.
Ah! My feet are on rocks! Now, I know I'm getting close! This is the tricky part. Walking on rocks is hard enough for the sighted, but for those of us with none, it's a real trick. Here's what I do.
Lean over as far as you can. Touch your toes! OK, if you are lucky, your lens will slide into place in your right eye. The trick is to keep it there. That means, do not look up! Not even once! If you do, it will slide back to the bottom of your eye, and you have to start all over. So come up just enough to be able to walk like you are on all fours. In fact, I haven't tried that! That's a great idea! Next time, I'll just get down their with Kilchis!
Now, your lens is in place, and you can see the rocks to navigate better. Stay steady! Don't move your back! Good on you! You are making progress! The rushing of the river is getting closer! Closer! Oh no!
Only once has the cold rush of water been too much for me to back up and get back on dry land. But, not to worry! We have a back eddy not 1/4 miles downriver where all tackle collects. That's where I ended up (but only once.) It was actually pretty cool. I was able to collect some really nice corkies that other fishermen had lost. Their loss, my gain!
I wasn't able to call for help on the 2 way, because it was really wet by then. That's alright, though, because my Mustang life vest worked just as it said it would. Once I was in up to my waist, it inflated perfectly! However, when it did, it busted my coat's zipper and sent the entire contents of my pockets whirling through the air at top speed. I speak from experience! Do not wear your coat OVER your life jacket. Just don't, alright?
Now, I was without backup gear, but I had lots of corkies. I was wet and cold, but I had no fear of falling in, anymore. None! I had been there, done that.
Let's get to the actual art of fishing.
Say that you do find yourself the perfect distance from the river and you want to make your first cast.
How to bait your hook.
(Side bar) Please be careful baiting your hook. I like my hooks sticky sharp. I take coumadin, and because I can't see, I checked my hook a little too abruptly. Coumadin thins your blood. I could not get the darn thing to stop bleeding, the entire fishing trip.)
OK now, you see to bait your hook by trying to lean over and stay leaned over, thus pushing your lens into place, or you can use your glasses. I love choices. Don't you?
I chose glasses.
Eggs out of jar, cut into pieces, and placed neatly on the hook. Perfect! Tighten egg loop. Drop and watch it sway beautifully back and forth. Perfect! Looks yummy! Alright, now stand upright.
Place glasses back in pocket. Wipe blood off with kleenex, again.
It's a good thing that I know my river. Well, I knew my river until the floods came and changed it all. Now I have no clue how to fish it, so we have to learn where the deep spots are, all over again. This is a good thing! You have nothing to aim for!
Toss it out there. Anywhere! OK! Quick! Put your rod between your knees, put away near glasses and get out far glasses. As soon as they are perched upon your nose, immediately, start searching for your bobber. It IS out there, somewhere!
Look left! Look right! Scan the entire horizon! I know it's out there! I know it is! I just threw it out there!
But, all of the sudden, I felt pressure on my reel! Oh no! Oh yes! I have a fish on! First cast! I can't believe this! The slack line that I previously felt tightened, and my rod started thumping like I have never felt, before! The line, zinging from my reel, singing the most awesome, exciting song! Whooo hoooo! Fish on!
I had absolutely no idea where the fish was, but I knew if I held my jaw right, I could land this sucker! All by myself! Who said the blind can't fish alone! Whhhheeeeeeeeeee ha! If they could only see me now!
I was so preoccupied, that I didn't even notice that my dog was yipping and running furiously on the bank. Kilchis and I were made for the river. He always finds a bird or some critter to entertain him! He must be having so much fun! I laughed. We were both having the time of our lives on the river! I love the outdoors!
Golly be jeebers, I've had a couple wild fish on before, but this one was different, somehow. It wasn't until I thought that this fish had grown legs and was shooting up the bank, before I wondered if something might be wrong. I just couldn't understand it. How much had the river changed with the flood? I could have sworn that last time I looked, there was no river in the direction my line was heading. To check to make certain, I reached for my other glasses. I thumbed the reel with line peeling off of it at break speed, holding the rod high, with the other.
My dog's yips began to sound like painful howls, and at the same time, my line was headed up the trail, and straight for my home! Was it going to filet itself and jump in the freezer, too?
Uh... what the? A bright red bobber raced past me on the rear end of my dog! Heart still pumping with adrenaline, excitement turned to terror as I realized I had caught Kilchis on my back cast. Big fish, indeed!
And so, my friends... I have decided that you are going to have to stick with stories of pretty flowery things, as I learn to fish blind. Either that, or someone is going to have to get on it and fix my eye sooner than three weeks from now.
These kinds of fishing adventures are not even for the dogs.
P.S. Kilchis is just fine, despite a long battle. In fact, when I got to the door, I had more blood on me from a darned finger poke than he had on his rear end. I looked at myself in the mirror, and I looked like I had been through a war. I felt like it, too.
Now... let's talk about the color of the trees in the Fall.

November 23rd

Time to get out the Turkey Candles!

God has a great sense of humor.
Yesterday while walking on the river, I found the largest agate I have ever seen! I'm just sure God put it there, just for me. I can't see the little ones, right now, but I saw this one! It's nearly as bigger than a softball! It's beautiful! Thank you, Father!
I have so much on my mind, but I've decided to put today away and just be thankful for how much that I have been given. I have my family with me, today, and I have wonderful food. I'm going to grill the Turkey and smoke it on the Traeger. I have everything that I need for side dishes, and I have help to read recipes. It will be a good Thanksgiving! --and I love my little candles that have been in our family for years.
I'm going to get dressed and go stand in the rain and see if God will also give me a salmon big enough to see. By the looks of the agate he gave me, it should be a real doozy!
I am so thankful for the doctor that I met, yesterday. Dr. Hwang (pronounced "Wong") at Casey Eye Institute took the time to talk to me, to explain to me, and to teach me. He is so awesome, and I'm just so thankful that I met him.
There is a chance that I may be having surgery this Thursday! I have some big decisions to make. It's a risky surgery. But, as I said, today is for thanks. None of that, today!
I got the giggles over the fact that the man who saved my life through my aortic surgery was Dr. Song. --and now I have another life saver, Dr. "Wong".
With Song and Wong, how could anyone go wrong? Dr, Wong will help me to see before long!
I can't tell you how thankful I am!
I was watching a show the other night about children with cancer. They have hardly any chance, right out of the gate.-- and here I am, 40 some years later! I have lived a long, very exciting and fulfilling life, and I have so much to be thankful for!
My children are young adults. I've been able to do most of all that I have dreamed of. Most of all, I'm happy and yes! I'm thankful!
Last Thursday, I had a CT exam. I was so looking forward to graduating to a 12 month exam, instead of every 6 months. It wasn't to be.
I found out on Friday when Dr. Song called, that it showed another aneurysm on my descending aorta. It's been hard for us to digest.
It's almost 2 years out since the big event, and I was starting to forget about it and beginning to really live again. This is a harsh reminder of my condition, and it is a bit hard for me to believe or to take in. I will be more careful, but I will not stop living how I choose to. No more lifting the vacuum or the grocery bags, but I will, by golly, fish for salmon!
The surgery to fix this is a long, risky, 12 hour surgery, and although I'm not a candidate for it quite yet, it looms over my head, more closely now. It's hard for me to accept that my only hope is that I "get" to have the surgery, rather than have the aneurysm rupture. If it ruptures, there isn't alot of hope for me! That's not a fun thought!
Well, now that this information is out, I'm returning to being thankful for the day. I am putting out of my mind my eye surgery and my aortic problems, and I'm concentrating on everything that I have had, and everything that I will have!
Before Dr. Song hung up, after delivering 'the news' to me, he said, "Jennie, keep fishing!" He knows that fishing is my passion, and even though I'm not really supposed to fish for large salmon, he knows that this love and passion of mine is what keeps me alive. What doesn't kill you, makes you stronger.
My body may be very delicate, but I feel strong in my soul. Strong, healthy, and thankful.
Today I am filled with thankfulness and hope. Like the salmon in the river who are fighting against the muddy, silt filled waters... they can and will survive. And they will spawn to make a new generation of salmon!
I am thankful for my life, and hopeful for my future.
As for right now, God isn't finished with me, yet!
Happy Thanksgiving to you all!

December 8th, 2006

The Christmas party was wonderful! What more can I say? It always is, and I just feel so good, when it's all over, and I have wonderful memories, and have hugged so many kind people!
It wasn't as bad, eyesight wise, as I thought, either. I did alright! I just hugged everyone as if they were my long lost friends, and it was almost even nicer, than normal! I hugged alot of people!
I think I'll just keep on doing that, even if I get my eyesight, back!
Oh! Remind me! I don't know if it's me stalling, or what, but I keep "forgetting" to make my surgery appointment. I will stop, now, and put that on my today's todo list!
Alright. That's done. I'll do it right after this!
I must admit... Something's funny with me. I think it's cuz of my lack of eyesight, but I haven't been fishing. Not only that, but I passed up an offer to go! Bill asked me to go, today. I just feel like I'm afraid to go. I can't see. I can't see my bobber. It's frustrating. I am working on it, though. I will go, one of these days!
I do fish out back, though. Just not as much. Partially, because I'm just sick about how many, many fish were taken out of the little Kilchis river, but partially because it's hard, as I mentioned earlier. I get so frustrated not being able to see my bobber, or things that I trip on, and I don't get the pleasure of spotting agates, unless they are a foot wide! I will get my eyes fixed. I will make an appointment. I have to!
This is the first time I've ever considered surgery, when I had little confidence, (as does the surgeon) that it will work. He says that if worse comes to worse, he'll sew me up and send me to Hopkins in Maryland. That's quite a trip, but if that's where the surgeon is, that I have to go to, that's where I'll be.
He said that he could do the followup, so that's good!
I can't keep up with ifish, lately. I must get my eyes fixed. (Did I say that, yet?)
Daily, it takes me three times as long to do things, so... you know the story, let's say it all together, now. "I have to get my eyes fixed!"
So many smiles at the party! I can't forget them! I can't wait until someone shows me some of the pictures! I haven't seen any, yet. I think it's going to be put into a surprise video that we'll all get to see! I can't wait!
Alright... back to my work. No... not work. I'm going to pick up the phone now, because....
It's time to make an appointment for my surgery!
You might want to call me, to see if I actually did it! Nah... I'll report back! I will! Really!
Or-- I could go fishing? Hey, yeah! I'm going fishing! Whooo hoooo! I love fishing, right? It's OK that I can't see. I can do this!
Bill, get out the boat! Let's go!

December 27th, 2006

Yikes. I was without cable internet for two days. I wrote a column, but was unable to upload it. It's written beneath this one, in this column..
The internet is still down, back home.
I am now at a hotel, getting ready for my surgery. I am so behind! I have not even opened my e mail, and doubt I will until I am able to see. That is, IF I am able to see!
It's scary to think that if this doesn't work, I'll never be able to see printed words again, unless I have surgery on my left eye, and that works. I will be without sight regardless, for a while. If you think I've died and gone on, you are wrong. I'm just not able to answer your e mails, or read the comp. Please be patient.
Yes, I am nervous, but I'm in good hands. My Heavenly Father holds me close at all times. I'm sitting in His lap, totally dependent and totally praising Him in all ways. No matter what, it's going to be alright, and whatever His plans are for me, I'll praise Him! Just repeating that to myself makes my whole body loosen up and relax, so I think I'll say that more often! Go, God!
Alrighty. I have my sparkling rock in my pocket that I want to see. I can't wait. I'll just be patient, and wait for all of the wonderful gifts my Father in heaven has in store for me.
Isn't it awesome that He wants to give us everything our hearts desire?
Before I left home, I walked on the river. Hail began to fall and the sky became totally dark. I couldn't help but think about what an awesome world we live in. I'm thankful for all that I've seen in my life. And yet, Heaven is to beat this? Wow.
What an awesome world we live in, and how blessed we all are to have such a loving Father to lean on, and to love us!
I am so appreciative for everyone who is praying for my eyesight and for me.
Off I go-- I will catch you up, as soon as I'm able!
In Him who no matter what-- makes my heart sing,
Jen

One more Jim Dandy

Well, I can see! A little better, anyhow. I am writing this without aid of any kind. I'm a little concerned over the top portion of my eyesight, as it curves. As if my lens might be curved? Either that, or it's still swelling and trauma in the eye. That's very possible. I'll go for that.
The joy of my so far successful surgery has been somewhat reduced by the loss of our good friend, Jim Erickson. It's still not possible to me. I'm walking around in a dream world state, thinking surely this is just a long, drawn out dream and that I'll soon wake. It makes everything seem unreal. I miss him so much. Maybe the anesthesia just hasn't worn off, yet. When it does, Jim will be there, congratulating me on my surgery, and again trying to plan our next trip down the North Fork as we were doing before my surgery.
Oh, Jim. Oh... Jim! I just walk around, and every five minutes, those are my words. Darnit, Jim! And here I'd offered him my Stearns life jacket just a week ago, since I upgraded to a Mustang auto inflate.
Oh, Jim!
Onto the news... My surgery was about 2 hours long. It was difficult for me, and kind of lonely, walking in the surgery room alone. I'm used to having someone to hold my hand. I'm big on that. Having someone hold my hand comforts me as I go to sleep. I missed that, but the nurse was kind enough to be there for me, and to hold my hand. That was awfully nice of her.
I woke to Bill, and it was so nice to see him. He took me to my hotel, and took care of me. I was better than I was during my last eye surgery. Much more coherent, and not so good, was the fact that I was more awake and felt more pain. Man, it hurt that first day! It still hurts, but is more tolerable, now.
It's just too bad that there isn't anything to take for a broken heart.
I could have been so excited about being able to see! I wanted to be excited. The rock in my pocket shows more crystals than I thought there were, and that was really fun to see. My Christmas tree is brighter, and the lights are individual, instead of a mass of color. The river has individual rocks, and I can see the trees down across the river, from the storm, rather than having to take a picture, and study it up close.
Jim? Are you there? Jim? Does he hear me when I talk? Why is this loss so hard on me?
I feel deep regret for sometimes putting him off on Bill when he called, only to answer a silly e mail on ifish. Ifish is important to me, but not nearly so much as my friends are to me. I will never again put someone off that calls me. Not my friends, that is for sure. Ifish can wait. My friends can not. Dinner time Jim, as we called him, can interrupt my dinner, or my ifish anytime. So can any of my friends, I promise! I have so much regret from that! Luckily, last week I dialed his number and we talked for nearly an hour. I so treasure that conversation, now, and I'm so glad I called him. I'm so glad I hugged him not long ago. A long, friendly, special hug for friends. Jim... I'll miss those hugs. I'll miss our fishing trips. I'll miss the "toot! toot!" as we took off in your raft for the next fishing hole.
Thank you for teaching me to cast better. Thank you for sharing your love of the North Fork with me. Thank you for all the compliments about ifish, and thank you for making me feel good about myself. You did that, Jim. I appreciate that.
I am going to spend some time, today, telling everyone that you spoke well about, what you said about them. People need to hear that! You spoke well of so many people!
OK, I have to rest. I'm supposed to be in bed. I'll go, now. I've caught up on my e mail, and I'm off, now.
Toot! Toot!

January 10th, 2007

I had a setback this week starting a couple days ago. Actually, it was the night of the 8th, after I spent too much time on the computer. I had a good day that day, and thinking I had recovered, really went all out. My mistake!
That night, I was in severe pain, and have been, since then. No doctors here in town can figure out why. I'm supposed to go to Portland to have it checked on but the weather isn't cooperating, for a drive over the mountains.
My pressure is good and no infection looks present, so the worst things are ruled out. They think it's just marfan, and my weird healing problems. Did I even tell you that the stitches and incisions that they made during the first surgery never healed? So, when they went to fill up the eyeball with fluids, it leaked out like a flat tire. Ish! And weird, weird, weird! Yes... marfan is weird!
So, here I am, unable to do anything on the comp. This short column will be all I can take before the pain will start back in and I'll be flat out on my back.
One thing I discovered this evening, however, is that Advil is an awesome drug! Here I was taking all kinds of narcotics, laying out flat, and they weren't even touching the pain. I took an Advil this afternoon and wow! I felt better! That was such a relief to me! (And continues to be!)
I even got up and fixed dinner for the boys for the first time in three days! (Well, leftovers, anyhow!) I even took the dogs for a short walk, outside in the snow!

February 15th 2007

I'm pickled tink! I went to the eye doctor yesterday. They measured me for glasses. No more contacts for this girl! My sclera patch is huge, and just won't allow it. Not only that, but my astigmatism is really bad and in several different places, now, due to the surgery. OK, one more reason is because I have corneal problems and may need a transplant in that eye. Alright, another problem is that it's really dry and painful... But, alas! Fear not! Be thou tickled! Listen to this! Yesterday I read the line that is 20/25! No, it's not normal vision, but I could read it! I'm pickled tink! Yes, I am!
The bad news is that my other eye is totally gone, now, but fear not again! Next on my plate is surgery to fix that one, too! Can you imagine if that eye would also have 20/25 (not real, dry, and corneal wrecked), but still? 20/25 vision? And if the surgery does not work, what do I have to lose? It's already gone! So, nuttin' honey! Of course, I'm signing right up! I want the chance to see again!
My eye doc shook her head, saying, "You know what really bothers me is people that have such slight vision problems, and they complain about being so blind. They have no clue what some people struggle with." Well, yes indeed that is true. But, you know? They say that if you were to shed your problems into a pile and get to choose someone elses, we would all probably take our own, back. There are people yet worse off than me, and I'm pleased as punch at what I've ended up with. It's a miracle!
I have to wait a week and a half to get my glasses, and I'm counting down the days. I cannot wait!

August 21st 2007

I'm doing the best that I can, and I am way way behind on e mails, pms, correspondence, and things people count on me to do.
Bill is pretty much my vision, and I thank God I have him to lean on.
I was to have surgery on September 6th on my blind eye, but now my good eye is going, also. I have a bleb on it, which is where my sutures didn't heal, (due to the same flimsy marfan connective tissue that made my aorta blow up.)
Anyhow, I'm sort of frustrated trying to work, but I'm doing my best. I'll probably have to have surgery on this, as soon as ifishstock is over. I should have it done before the party, but... but... it's ifishstock!!!! I have to go to the doc, tomorrow, and I certainly hope he doesn't say I have to have it done before! Yikes.
So... hang in there, and I'm half talking to myself.
(BTW, A "bleb" is a blister like thing, that fills with fluid on your sclera.
"Warning!", says Justcallmedave, "don't do a Google image search on bleb!" )

September 10th 2007

Happy September! I was first!
First up, (and as usual the first of every month), I posted Stan's most excellent column, here. Please feel free to click here to access and bookmark it!

I woke, today, finally bolting out of denial. For some reason, I had high hopes for long mornings sipping coffee, with nothing much to do. That wasn't to be, and reality is catching up with me. I spent my time catching up, and now it's time to face reality.
I have surgery on Thursday to try to fix my eye. I'm so stressed about this that I had just totally blocked it from my mind. And oh! Did I mention? I not only get one eye surgery, but two! Double your pleasure! Double your fun! Sign up for two eye surgeries, instead of just one!
Ya think they'll wax my legs for me, while I'm out? I'd love that. It hurts!
Yeah... I have some problems with my last surgery in my right eye. The stitches didn't heal, (what's new) and now I have a bleb on my eye. That's like a blister. Too funny. My eye really hurt one day, and I had David look at it for me. "Ewe!" He said. "It's a blister!" Later, after talking to the doc, David said, "So what did the doctor say?"
"Well, David," I started... "He said that it's not good, and I need you to take a razor blade and pop it for me." The look of horror on his face was unforgettable! I laughed till I cried. Poor kid! Mean Mom! I did tell him I was joking.
So, first off, this Thursday, I'm going to start out with them taking my intraocular lens out of the anterior chamber. If that goes well, and my eye doesn't fall apart, then they'll put a new IOL (Yay! I'll see like a kid in a candy store!) in the posterior position. Then... if that all goes well, they'll give me a few endothelial (?) cells for my cornea. You know, a transplant. It's some kind of new thing, and my cornea is shot, so... that would be nice to have a bright and shiny new cornea to go with my bright and shiny new IOL! After all, it's time to build our Fall wardrobe, girls! Get your corneas here! Don't you think? Oh, yay. (Yes, I'm being sarcastic.)
Then, if that all goes well, I get to go to a hotel and sleep it off, go to the doc the next morning, and then come home! Weeks and weeks of wearing an eye shield will follow.
Then, when I'm all well and you guys are all salmon fishing, I'll go do the right eye! This time, it won't be so special. Just a sclera patch over a hole in my eye. I don't much care for holes in my eyes, so it will be nice to have it all patched up.
You know, this is a good lesson, also. One year I didn't have the money, really to update my wardrobe, so I took my old Coach purse, and had it redone, restitched and cleaned up. It was good as new, so girls? No need to ever get a whole new eye. Just get yours patched!
OK... I'm sick of surgeries. I really am. But, you know what? Thank GOD that they keep fixing me! That's all I can say! Thank GOD! Yes, at this point in my life I feel like I can be sarcastic, and just giggle along with it all. It is what it is, and I have to do it. I'm glad that I have the choice, the chance, and yes, the cheer!! As long as they can patch me up like Ms. Dumpty, I'm good to go! I'll be fishing again in no time! You watch!

September 7th 2007

I am back home and headed to rest. I have no vision in my left eye (surgery eye) at this time, but the doctor says this might change. That the lens is in the right place, but my pressure is very low, and the 20/400 that I am testing at may be a result of swelling. I sure hope so. I'm a bit worried and pretty down about it. Pray for change! I am! It sure itches. It's worse vision by a bit, than what I had before, so it's hard for me to see to type unless I close that eye. Rest. I must rest. With rest might come better vision? I hope so!
Very fatigued, though. Off I go.
Kilchis missed me. (I love that dog!)

September 10th 2007

Yesterday Andrew, Bill and I went to OHSU and spent the entire day there! Sheesh! Pack a picnic!
Roo had an appointment with Dr. Hwang at 9:40. He wasn't seen till noon!!!! Pheh! But, there is no way you could be upset. Dr. Hwang is so awesome. He makes you giggle how he runs from patient to patient, trying to help everyone. He's overbooked, yes, but that's because so many people need expert help, and there just aren't enough Portland docs to go around.
They had to dilate Andrew FOUR times to get his eyes dilated enough to see what was going on. Sure enough, one stitch in his lens was loose. So, they are going to do the exact same surgery that I had 9 months ago on my right eye.
If it doesn't go well, then they will take that lens out, and place a new one in, which is quite another matter. A more serious surgery. I guess it's all serious and scary, as it is presently his only functional eye.
We talked a bit about doing his other eye, but he said, "One at a time, please." Andrew is finally ready to consider them doing his other eye. They are concerned, though, that since his brain has never seen out of that eye, it may be too much stimulation for his brain, and his brain will not know what to do with it. There is also the chance that his brain won't be able to learn how to use the two eyes together, and that he would see double.
So, lots to pray about! Andrew has really grown up, though! The smell of the place didn't bother him, and he seems emotionally ready for this next challenge in his life.
He said to me, though, "Everything bad is happening lately. My Mac book is broken and so is my eye!" Poor kid. I think he'd rather you pray for a new Mac laptop than his eye!
Now, for the good news on me eyes:
My appointment was at 1:45, and I saw Dr. Mathers at 3:00. Those docs are SO busy!
I am seeing better! Not great, and I still can't read, but occasionally the sight gets better. It goes in and out. What's going on is that there was bleeding in my eye, and it's got to reabsorb before I can see. The good Doc was so nice to me.
Dr. Mathers held my hands together in a prayer like pose, and got up close and said to me, "Everything is going well!" I liked that.
My stitches were really bothering me, and I told him so. He said that he could fix that by melting them. I said, "Need a Bic lighter?" That made him giggle. Anyhow, they got this torch thingy out and said I'd feel warmth. I'll TELL YA WARMTH!
I don't know what happened, but they said it wouldn't hurt, but it HURT!!!!!!!! BIGTIME! So, he backed off and tried it again. YOWSA! I guess they burned my cornea with it.
So, the fact is, after the burn stops hurting it will feel better!
My poor eyes. They've been doctored to the point of a patchwork quilt. It's a wonder they see at all!
So, that's the latest entry into "All of my eye surgeries..."
Pray for Roo on September 27th. That's the date of his next surgery.
Love you all,
Jen

Update! Nov 2009! I can see!
November 8th

When I go out of town, I simply MUST stop at Costco to buy duck jerky. When I come home with duck jerky, the dogs forgive me for my time away. They wag their tails and think "What a mighty hunter is she! She has been out in the field hunting and look what she has brought us!"
Of course, I must hunt! Why else would I leave the home nest?
Truth is, (but don't tell) I went to the doctor and I went hunting at Nordstrom Rack! They had a "big shoe" event sale and I had to go! Both Andrew and I have big feet and it isn't cheap to house them! In fact, when I was little, my Mom and I would spend entire days trying to fit me at Nordstroms and at a little store called .. Nados? Was that it? At Lloyd Center. Finally, my Mom would throw up her hands and say, "Just put her in a shoe box. Wrap it up with duct tape and call it good!" I mean, it was so frustrating to have an 11 AAAA foot at 12 years old. The only shoes that would fit, were old lady styles. Yuck! And I was at that age where I was so embarrassed of my long, snaky foot! Now, I kind of admire them. They are long and slim and look like princess feet!
I so wanted to stop and get my toes painted and get a pedicure, somewhere.
Instead, I hunted ducks at Costco. And, I found no shoes for either Andrew or I, at The Rack. Oh, well!
Fact is, Costco was out of duck jerky, too! I failed the hunt on all counts! Sounds like fishing, lately!
I came dragging in the house with chicken jerky. The dogs accepted my gift, but not as excitedly as if I had a bag of duck. But, they forgave me.
Rev and Bill are out hunting this morning to cover for me. Maybe they'll get duck!
I have great news from the eye doc! Get this! I see better today then I've ever seen before!
Well, not totally, but on the Snellen Eye Chart! The doctor was thrilled! I mean, two years ago, I went 8 months, totally blind. I thought for sure that I was done seeing. I accepted it. I learned to walk the river without sight. I knew every branch, every soggy grassy knoll that might give, should I accidently get too close to the water. I even practiced bobber fishing, blind! Now, that was a challenge! I'd toss out the bobber and then I remembered, "Oh! This isn't going to work!" Makes me laugh, now.
Anyhow, since then, I've had a retinal detachment repair, The haptic in my sewn in lens gave way and it was repaired, and I've had a corneal transplant! All of that, and now that eye sees 20/40 on the chart! I have to study it for a while. The images are all messed up and distorted, but after a while, I can make it out and I see up to 20/40! My right eye is 20/20! It's not distorted so much, but very dim. But, my brain puts the two together, and I can see! I can see! Isn't that awesome? It's flat vision. I have no 3d, but because I once had 3D vision, my brain kind of knows what it should look like, and puts it all together. My right eye fixes the distortion in my left and it all works together just fine! I can drive! I can compute! I can bobber fish! I can see!
I guess I have no pupil in my left eye, so there is light streaming in from all angles and that's what distorts my left eye. Oh well. Who cares! I'm down with that!
So, I left the eye doctor's office singing!
I'm still singing, today. Think I'll go look at the river!
If anyone wants to read why I'm so thrilled with this, read about all my eye surgeries!

 


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