Showing posts with label Diabetic Retinapathy. Show all posts
Showing posts with label Diabetic Retinapathy. Show all posts

Sunday, February 10, 2013

The One Eye Plow Guy

My right eye went dark in 2003. I failed to leave a cornea abrasion covered long enough. The eye looked around the obstruction. The muscles pulled to the outside and peeled the retina off the back of the eye. Diabetic retinapathy, opportunistic of other problems.
I started plowing in 2006, in part because other peoples’ unreliability had crossed all acceptable lines. The city had thoroughly plowed me in, not just with a massive plow ridge, but by moving the snow from the main street to the dead-end access that led to my parking. I had a contractor plowing, but he vacationed to Florida every February. I have not driven since October 2011 but only sold the jeep two months ago. I’m feeling that loss and it triggers feelings of uselessness and helplessness via things outside my control. These things are issues I had handled after experiencing them but have come full circle.
I can only accept limitations. I can only try to impress those genuine limitations on others. A blind guy with a bad leg and reliance on an orthopedic boot brace cannot go shovel someone else’s car out.
I was good at the plowing. The first snowfall after I obtained the Jeep Wrangler was a minor but complicated storm. An inch of snow fell, then turned to rain. The precipitation stopped when a cold front blew in and froze the slush. Wanting to practice and play with the new equipment, I plowed the properties I managed. The tenants were thrilled. Their home lots were bare dry pavement while everywhere else, work, commercial establishments and most municipal streets, were slicked over with layers of ice that remained for days.
I no longer have the equipment to do that because I am no longer equipped to operate the equipment. I did not stop driving because someone made me, or because I had gotten into a serious accident because I was driving past the time I should have been. I stopped on my own because I didn’t want to kill myself or someone else.
Medications combine with insulin fluctuations to trigger periods of vertigo. I have a hard enough time moving and standing without carrying things when the ground is smooth and dry. Snowstorms had been my active times since 2006, and also periods of productive alone time. I miss those aspects. I would prefer to be able to continue some of them, but that’s now physically possible for me any longer. There’s a negative emotional charge to the entire situation for me.
A Wrangler is one of the shortest vehicles that can handle a plow (and I still burned out two transmissions.) Mine was equipped with the narrowest plow blade available. I could get into tight areas despite the fact that my field of vision was reduced and I lacked depth perception. I really was performing beyond my physical capabilities
Those physical capabilities are further diminished now, permanently. I am learning to accept that. Can others do the same?

Sunday, February 3, 2013

Adjusting

I’m coping OK. Not perfectly, but OK, and many people in my life think I have been dealing with the blindness and then the Charcot foot better than they or most people could.
What I miss most and have accepted as unrecoverable is the ability to read. This specific handicap should not have happened. When being "prepared" for cataract surgery, I should have been told about lense options, as well as the risk factors to diabetic retinapathy. I was warned of neither. Dr. Paul Negrey of Koch Eye Associates chose a far-sighted lense for me. This killed my close vision. Glasses greater than 6.0 magnification–twice the strength of what is allowed to be sold as over-the-counter reading glasses here in Rhode Island–still don’t allow comfortable reading.
This is frustrating enough in things I can do–usually–such as figuring out what kind of soup is in an unopened can by recognizing word patterns and shapes and making an effort to remember what varieties I bought in different brands.
I can read the computer only with a series of enhancement. Reliance on a magnifying mouse as one of those enhancements has me unable to see an entire web page as a whole. Before the 2009 Cialis-triggered catastrophe, I had done professional web design. Now I am an even better judge of poor design and navigation. The teenagers and twenty-somethings who lead the field don’t factor in reduced or handicapped vision needs when promoting hover menus, small typefaces and busy layouts.
Audio books can replace novel reading, to certain extent. Rhode Island does have a great interlibrary loan system. I’ve gone through all of Kate Wilhelm’s Barbara Holloway mysteries and Sue Grafton’s alphabet. I’m pushing through Lawrence Block’s body of work with considerable enjoyment. But classics can be problematic because there’s no way to glance over the boring parts.
My unread home library consists mostly of out of print classic science fiction. Not a lot of this is available in audio.
I most miss what had been my greatest source of "childish" escapism, comic books. My interest had been waning for years, but at the time of the vitreous hemorrhage, my long-time favorite Alpha Flight saw publication of a new 8-issue series. My eyesight continued to decline and I was not able to read beyond the third issue. Now I have trouble even discerning covers and logos
Worst, on the most personal level, I have been unable to read the hard-copy versions of the anthologies that have published my work in the past few years. I can recognize the shape of my name in print, and have to content myself with that.
I’m adjusting well, but it’s not always easy.

Sunday, January 27, 2013

Victrectomy Post Op

I described "scars" on the cornea that I thought were left from incisions necessary during the victrectomy. This procedure involves draining the eye of existing fluids and replacing it, usually with saline solution. My highly recommended retina specialist who performed the January 10 procedure, Doctor Krzystolik, said that the circles I can see are more likely to be drops of the silicone oil that was put in my eye during the 2012 retina reattachment. Her theory is probably the case. She’s the doctor and has more experience in these things. From my perspective, the larger circles have begun to either dissipate or have merged.
My vision has changed since the recent procedure, mostly for the better. I can see better at a distance of about four feet, but not particularly clearly or in detail.
Light sensitivity remains a major problem and affects me in different ways. The computer is still problematic, but in different ways. Prior to the victrectomy, I managed the computer by using a 32-inch TV as a monitor, with the screen zoomed in, with a magnifying mouse, and with glasses. Now the glasses actually hinder view of the monitor but remain necessary for me to see the keyboard.
Of course, having a cataract lense that blinded me to close vision remains a major problem. The "Cataract" label will bring up most of the old history on that, as would many of the posts under the "God Complex" label.
I feel more discomfort from the eye since the victrectomy. Redness in the eyeball is common. They eye often feels itchy and raw, and it tears often, as in wetness, not ripping. There’s also frequent pain, in the eye, the socket, and headaches that radiate on that left side of my head.
The pain was worst five days after the surgery, to excruciating levels. I have a high pain threshold, so I can’t imagine how others might describe what I was feeling.
I blamed myself for this onset of pain, because I had exerted that day, lifting barrels of ice melting salt and carrying groceries up all the stairs necessary to get home.
Doctor Krzystolik said she didn’t think the exertion caused the problem.
I was suffering a side effect from the procedure....

Thursday, January 24, 2013

Not Blaming the Blameless

On opening my eyes without bandages and shield following the victrectomy, my vision was improved. Dr. Krzystolik had not been convinced, but I had theorized that this procedure of replacing the fluid in my eye would improve my vision because the new fluid put in my eye would be cleaner. I’m happy to have been proven correct on this, not in any sense of "knowing better" than the doctor but because my vision is better than it was before the procedure.
My vision will never be fully functional. Two great loves of my life are permanently lost to me, reading and driving. It can be hard to explain what I can and cannot see at any given time. It’s not just diabetic retinapathy that limits my vision. Obstructions, light sensitivity, cataract lense restrictions, muscle damage within the eye and other factors all contribute variable conditions. Doctor Krzystolik herself noted on her first examination that I had the most complicated eyes she had ever seen.
I like and respect Doctor Krzystolik. She has been cautious in promising expectations following any treatment. She has told me what I cannot expect for improvement. She has listened to me on every level and addressed some aspects of coping with what’s been going on.
I can’t emphasize enough my approval and satisfaction of this retina specialist with offices in both Providence, Rhode Island and Plainville Massachusetts, for two reasons. First, I have been so candid on this blog when doctors have done wrong that I feel it fair and necessary to accentuate the positives. Secondly, the victrectomy saw complications for which I do not blame Doctor Krzystolik.
There’s a schoolyard oath that I must have vowed then broken during my wayward and turbulent childhood: "Cross my heart, hope to die, stick a needle in my eye." That theory is as useful as if I wanted to blame Doctor Krzystolik , which I don’t.
I think rightfully I still blame Negrey and Michael O’Brien at Koch Eye Associates for most of my current and permanent disabilities. Doctor Krzystolik , however, has done her best to temper those conditions and correct what she could, all without pushing me towards things with a lack of necessary information.
Details of the surgical complications to follow.

Wednesday, January 23, 2013

Surgical Scars

Following the victrectomy, I have spent a lot of time with my eyes closed. I used bandages and shields longer than recommended to keep the left eye dormant. I don’t exactly do much these days, especially while I am supposed to not exert and thus strain muscles that may be connected to the eye, so this has been mostly manageable. My reasoning ties directly to the experience of the complications that darkened my right eye ten years ago.
Back then, my right eye misaligned as the eye looked around the obstruction caused by a temporary cornea abrasion. I recently had an inexplicable minor abrasion on the left eye, which I did not worry about because I couldn’t see out the eye too clearly anyway.
Post victrectomy, the cornea is more of an issue. The procedure involved draining the eye of silicone oil and refilling it with saline solution. I didn’t ask many details about the procedure, because I didn’t want to know details that sound horrific in theory. But my basic ideas of sticking something in the eye to drain and fill seemed about right.
There’s scars in the cornea. They are at the bottom of the field of vision, but can rise to more central prominence as the eye looks around. I tend to look at the scars as they strike me as cool in a morbid way.
The most prominent are three perfect dark rimmed circles in the formation of an upwards-pointing triangle. Aside the dark edges, I can see through these bubbles. There’s a fourth circle to the right of the upper part of the triangle. I can really only see that one when I focus on the strange pattern. Two much smaller circles will also become evident These are the scars of needles or hoses stuck in my eye during the surgical procedure.
I do not expect these scars to be permanent. But until the limited cells of the cornea resettle, the formation is a distraction to my vision. I’m pretty confident that the circles are on the cornea as the formation realigns when I focus on it. The triangle spreads out or flattens and the smaller "needle holes" will rearrange around the larger circles. Unlike the retinapathy flashers or the scar of "light" that is the mark of the original Cialis-induced vitreous hemorrhage, these scars are only visible when the eye is open and hit by light. Closing my eyes makes the circles go away. The next time I see them, they return in their original formation.
I am afraid of any instinct to look around the scars, or to focus on them. My right eye suffered permanent damage to the internal muscular structure by looking around the minor obstruction on the cornea.
I figure better safe than sorry, and the closed eyes help ensure I take it easy during the healing process.

Tuesday, January 22, 2013

Blinded on the Right

Wearing the bandage and shield following the victrectomy is a difficult thing. My right eye is blinder than the left and has its own set of complications.
I don’t usually realize how much the right eye can see because I rely on the better left eye.
The right eye suffered a cornea abrasion in 2003, ten years ago this month. Due to an incident with an idiot and a hot, heavy steak fry, I’d previously had a serious cornea abrasion and knew how to take care of it. Unfortunately, I didn’t take care of the 2003 incident long enough. While active and routine risks had passed, the cornea still contained an obstruction, which my eye looked around rather than through. This made the eye pull to the right. Muscles striated and diabetic complications developed. The right retina detached. The eye went dark except for the outside perineal and a pinhole that aligns with neither the left eye nor my brain’s expectation of where it is looking. The reduced vision is further obstructed by a cataract. When she first saw me, Doctor Krzystolik said that I had the most complicated set of eye problems she had treated, and I don’t think she was exaggerating or that I have been surpassed.
The time of reliance on the right eye was thankfully short. It’s been remarked that I have great aim for a blind guy; that was no longer so true when what I see is actually shifted in position from where I see it. I miss when I put things on the counter. (Yes, we’re out of the bathroom now.) I am more likely to walk into doors and the edges of walls when relying on the right eye. Except for the bad aim, my roommate finds it comical, all except for the bad aim. My realization that the tub presents a much larger target alleviated his burden.

Tuesday, January 8, 2013

Victrectomy

The procedure I will undergo this Thursday is called a Victrectomy. Basically the doctor will be draining the fluid in the center of the eye and replacing it. The replacement is usually with saline solution, but that may not necessarily be the case with me. My eye currently holds silicone oil rather than natural vitreous fluid. It’s been this way since the retina reattachment surgery in January 2012. This has necessitated up to five different eye drops daily, covering eye pressure and sterilization, dilation and a steroid. The steroid has given me the most problems from the beginning, including nervous/psychological tics, like I need more of those. Most disruptive is a natural side effect of increased stomach acid production. Water on an empty stomach, too much acidic food or not enough food like milk to act as a base and I have been prone to puking. The last year, obviously, has been less than pleasant. The regimen of eye drops affects my vision at least for a while, and I suspect may contribute to the overall and still increasing decline.
My hope is that the silicone oil has gotten "dirty" over the last year. My vision is now massively disabled by light sensitivity or light processing issues, and a constant fog, not at all unlike early morning fog. The fog has thickened over time, and I can see it as "TV white noise" even when my eyes are closed. The insertion of fresh fluid should provide a clear globe for me to look through.
That’s what I, and my eye doctor, are hoping anyway.
The decline has not been anything like the typical progression of diabetic retinapathy. I’ve been there and done that with the right eye ten years ago. The vision hasn’t gotten darker per se, but the eye cannot process light or readjust to changing light sources and that fog just got thicker and thicker until I could no longer see a foot in front of me.
I consider the
Victrectomy a "procedure" rather than a "surgery," but that is probably hair splitting semantics. There was far more risk to last year’s reattachment, which is why I had told very few people about the surgery. My doctor had to warn me about possible adverse effects, which could be dire, but I don’t think that’s likely.As the vision has gotten worse, I have been looking at–or rather groping for–this surgery as the last chance to improve and be able to stay functional on anything. I know my vision will never be what it was, but regaining any function will be a welcome change.
Wish me luck.

Monday, January 7, 2013

The Long Decline

On January 19, 2012, I had outpatient surgery of retina reattachment. My eyesight in the preceding months had been declining in spurts, mostly with the release of floaters that enter the vitreous liquid in the center of the eye. The floaters cast shadows and darkened the vision with shadows and obstructions. By this time, most of the red cloud of the October 2009 vitreous hemorrhage had healed and cleared. The vision was declining with symptoms of diabetic retinapathy by summer, 2010. Researching the PRP surgery I had undergone after urgent pushing by Koch Eye associates revealed that the side effects of the PRP laser are identical to the symptoms of diabetic retinapathy. Too late for me. What’s done was done, and after the first round of symptom development including flashers that began after the third PRP session and the recession of peripheral, the darkness advanced. Fall 2011 saw it getting worse regularly.
The retina reattachment halted that. Part of that surgery included replacing the natural eye fluid with a silicone oil. The silicone helps to maintain pressure in the eye to keep the back of the eye "glued together." This can increase eye pressure and cause glaucoma, one of the few problems I didn’t have in either eye. Two kinds of eye drops kept that problem at bay. At one point the pressure was too low; stopping the drops on the doc’s recommendation saw a surge in pressure. Resumption of the drops brought that back under control.
From all physical signs from doctors looking at my eye, the reattachment was successful and "stayed together." Looking out from the eye, however, indicates different results. The vision was at a slow decline in the year since the surgery.
The specific problems have not been traditional signs of diabetic retinapathy. Before the retina reattachment, the cloud overwhelming my vision was dark, and had definite, noticeable onsets as "gunk" in the eye released This year’s decline has been different.
I suffered no sudden "setbacks," as I called the release of floaters. Two problems developed and worsened over time.
The first is the light sensitivity and my eye’s apparent inability to process light. Strong light sources blind me with their brilliance and glare. My eye experienced increasing difficulty adjusting to variable light, even that of inconstant and inconsistent outdoor shadows of leafy trees. The reverse also proved true. Not enough light just was not enough light. Night vision is blindness. Vision in overly bright light is blindness.
A new cloud also developed, much like bottled fog that I carry with me everywhere. This was not like the red cloud of the hemorrhage or the black cloud of developing retinapathy. The fog is very clean, and has been since post op. But as "clean" as it has stayed, it has thickened over time. After the reattachment, I could see more than four feet away with finger motion. Now I can barely see overall motion at one foot away.
Without cues of voices, I cannot identify who I am talking to. I cannot see people sitting across a table from me. Moving around even familiar environs is extremely difficult, and always runs the danger of collision with people who assume I will see them and get out of their way. Seeing the computer even with multiple ways and levels of enhancements has become more difficult, and more painful.
Thursday’s procedure may improve the new disabilities.
Maybe.

Thursday, January 3, 2013

On the Road

I went away in late December. I don’t bring this up as automatic excuse for the lack of posts, although that is the main reason. I use the computer not just with glasses, but also with a 32-inch TV as a monitor and a magnifying mouse and at increased zoom levels. Computer things just weren’t possible away from home.
More significant was just how poor my vision has become. Most of the places I go are t least somewhat familiar, none, obviously, moreso than my own home. Removed from that for more than a week, I was totally and completely lost. Even most other places I go locally are familiar, including the same restaurants and grocery store. I do not leave the house alone and can usually get myself at least close to where I need to be within a building. Outside the building, I often cannot tell where the building is.
Yes, it’s gotten that bad.
While traveling, nothing was familiar. I seldom knew what town I was in, and often did not know the state. The layouts of unfamiliar hotel rooms became indecipherable mazes,
I live in a townhouse style apartment on the third and fourth floors of the building. This has become increasingly difficult for a blind guys with a bad foot and permanent reliance on a Crow boot. There’s thirty-three steps up to the apartment, a difficult proposition when empty handed, a challenge when doing something such as carrying groceries.
Away from the familiarity of home and familiar haunts, I was utterly useless. This made the trip harder on me and my companions.
The extent that I routinely utilize knowledge of my surroundings became acutely apparent without familiar surrounding.
Worse, my eyesight is further diminishing daily these days. Away from the familiar, I could not notice the further decline. Once home again, it was evident how much less I could see from barely more than a week’s passage of time.
I‘m coping. Self pitying moods are more common. Despondency is my most prevailing feeling. But I am coping, trying to stay positive.
I can see about a foot in front of me. I can see about two weeks ahead.
"Through Rose Colored Lenses" is due for publication around the 15th. This comedic short story is the only fiction I have written about the experience of going blind. A few days before that, I will be having what may be the last ditch possibility of restoring some level of vision and functionality.

Saturday, October 20, 2012

Feeling it Out: Mid Life

My experience of watching other men deal with their mid life crises had provided me experience than just with my father, who is the type who would probably deny ever having had a mid life crisis. Fathers, bosses, mentors...most ruined things for themselves in one way or another. I sought to avoid that.
I had that "what to do and how to get there" life crisis early, at high school rather than college age. It’s no surprise my mid life crisis came at 36 rather than in my 40’s. It was mild. I developed an uncharacteristic infatuation that I could not make develop. I regretted having little financial savings. I listened to other people who told me I should be taking care of myself better health-wise.
At 43, I am still shunned by the former object of my affections. My main means of savings is still home ownership and equity–always iffy in this economy. And now I am not only disabled but feel like crap.
My diet had never been bad. The sole dietary change I made was switching from real sugar to Equal in my morning coffee. I had developed the sugar habit to boost my sugar in the days when I could not actually afford to eat anything for breakfast. That had changed. The other significant change when I started "taking care of myself better" was following my GP’s guidelines of taking a much higher insulin dose at night. It made sense to me as I knew by feel that overnights were the main time I sugar would rise to uncomfortable levels.
My sugars did lower, although never to the A1C numbers my doctor wanted to see. I was no longer getting up in the night to go pee. Instead, I was not able to sleep because the sugar levels felt too low. Too high, and I don’t get good sleep because I’m off to the bathroom a few times each night. Too low, I just can’t actually fall asleep.
I still seldom find that right balance.
This past spring and summer, I made a renewed effort to get my sugars lower, no matter how I felt. The inflamed Charcot foot had further impeded my circulation enough to cause the quick and massive infection that almost cost me a toe. The night of that hospital admittance also emphasized one particular problem food that raises sugars beyond expectations. (Low fat milk, which I will address in detail before long.) I succeeded, and am feeling so much worse for it.
Here’s how the diabetic things feel these days.
My blood pressure went back to normal levels when the Charcot inflammation subsided. The reduced swelling is probably more of a by product of the prednisone I still must drop into my eye than true healing. The foot is stable, but the Crow boot is a permanent fixture due to the ankle collapse suffered from the reduced circulation. I have frequent vertigo issues, which is probably a combination of the eye maladies and reaction to blood pressure medication meant for a worse situation than I am now in. Any of the four to five eye drop medications may also play into the vertigo.
My eye is a mess and my vision is getting worse. The strobing light exams contribute to this. The eye drops reduce vision at least temporarily when taken. Debris may be built up in the silicone oil that still remains in my eye. Light sensitivity is still blinding, darkness vision is non-existent, and the "retinapathy veil" grows darker. On doctor’s instructions, I had stopped the eye pressure drops when the pressure was good, and it re-rose to scary levels, so those drops are to be continued indefinitely. The prednisone still gives stomach problems, but not as severe as they were last winter.
Long story short, I’m the mess I had sought to avoid ever becoming after re-examining life in middle age. Maybe that "male menopause" just can’t be avoided.

Tuesday, October 2, 2012

Post-op Pattern

The retina reattachment procedure did not go as well as either my eye doctor or I had hoped. I dealt with that disappointment OK, all things considered.
I noticed a pattern that is giving me reason to look at things more deeply, so to speak. I have noticed a definite pattern that my eyesight gets worse. When it recovers from the visit, it does .
My theory is the light sensitivity effect. Glare is worse, sensitivity to light is worse and darkness vision is worse, all worse aftert each exam.
In these visits, they are dilating my eye and strobing the eye with very bright light. This is how the doctor is able to see the retina to note changes. I think this has the same damaging effect as staring at the sun.
I don’t see the point of going to the doctor–even this very good doctor–to be told I can’t see.
The eye is unstable, and the condition is currently made worse by the resumption of eye drops for eye pressure and the report of a cornea scratch. There’s more to the latter, and those have the texture of anchovy paste and the effect of making things worse.
I still have a procedure to go. The center of my eye is filled with silicone oil, which is meant to keep pressure on the retina to keep it in place.to be drained. My realistic hope is that the oil has gotten clouded over time and that the procedure will ewatore some acuity.
Other things to hope for are just not realistic. For me, realism always trumps optimism. The doctor wants to continue waiting before changing the silicone oil. If it is potentially creating a glaucoma problem, and if my vision worsens every time I am examined, we’re crossing the threshold of the treatment being worse than the disease.

Monday, October 1, 2012

Kidney Pie

Kidney disease as part and parcel of the entire nightmare of diabetes is easy to understand with a little knowledge of how kidneys work. In essence, they are filled with blood vessels.
Learning that simple fact also tied the connection between blood pressure and kidneys in my brain. I had not been able to grasp the logic of the kidney-blood pressure correlations even asking questions of doctors. I knew that blood pressure medications are usually also beneficial to kidney health.
The tiny blood vessels within the kidneys act as the actual filters for waste products in the blood. The kidneys expel the waste through urine.
Those facts make a lot of the diabetes connections self evident to me.
The primary symptom of high blood sugar in diabetes is severe thirst and frequent urination. The kidneys sense too much waste sugar and make you thirsty to give them the fluid they need to expel the waste at peak efficiency.
Constant high blood sugar damages blood vessels. This damage is most apparent in retinapathy and circulation. Kidneys follow closely behind these problems. Knowing that the blood vessels in the kidneys are tiny makes it quite understandable that they can be damaged easily.
High blood sugars thicken the blood. The thicker blood passes less easily, especially through smaller vessels. Like Coca-Cola that was wiped but not washed from a surface, the blood becomes sticky, and this further reduces the blood’s ability to pass freely. The smaller vessels and passageways clog. Weaker blood vessels can break, restricted vessels can increase blood pressure, and smaller vessels will clog or reduce circulation, which deprives body parts of needed oxygen.
Constant high blood sugar overworks the kidneys on a regular basis and thus can hasten damage just by effectively wearing out the kidneys with overwork. The waste products that the kidneys remove from the blood slide through "filter holes" in the kidney. The waste stays molecularly smaller than protein and healthy blood cells. Overwork of the kidneys essentially enlarges the holes over time and allows good protein molecules to pass into the urine.
The lab test for kidney function and performance is usually a simple test. The lab checks for amounts of protein in the urine. The kidneys are supposed to filter waste but retain protein. The presence of protein in the urine indicates a problem. This really is the best way to determine kidney problem at a stage where further development of the problem can be kept in check.
Other "early symptoms" of kidney disease are vague and overlaps with too many other potential problems with the body. The overlap is also high with other symptoms that diabetics may feel on a daily basis without kidney problems. These general symptoms include fatigue, poor appetite, poor concentration, insomnia or other sleeping difficulties, general weakness, and upset stomach.
The best preventative maintenance for kidneys is to drink a lot of water regularly, not just when your body says it’s thirsty.

Friday, September 14, 2012

Out of the Dark

The current setbacks are not random. My experience and attention to the problem reinforces my "crazy" theory that the standard treatment of diabetic eyes is contributing to the problem. Instead of going dark, I am having increasing problems processing light. The degradation is not random, but it is constant.
In standard check ups on diabetic eyes, the eyes are dilated with drops so the doctor can look through the widened pupil and see the retina. In this process, they strobe the eye with intense light.
I do not remember this ever being done as a child. The first such exam I remember was when I was twenty-one. I remember it specifically not just because I was blinded by the unyielding brightness into the next day. That exam marked the definite beginning of "diabetic eye condition" of light sensitivity. Things were never the same, never as comfortable, afterwards.
My recent "setbacks" in vision have all occurred after similar exams by the eye doctor who performed the retina reattachment. I say that as statement of fact and am not blaming her for the recent degradation or the lack of success for the reattachment procedure. She is examining the eye according to generally accepted practice.
She told me after the first exam she performed when I became her patient that I had the most complicated set of eye problems she had encountered. While I think the "hazing in" form of increased blindness I have been noticing is directly rooted from the retina issue, I don’t deny that other factors could be at work.
My vision is fading to bright cloud after each follow up visit. Each setback has the computer brighter, with details such as type on the screen more faded or "grayed out." Adjustment between sources of light and dark is more difficult after each visit. Any color send when looking at the bright box of the TV is further washed out for the brightness of the screen.
This became a hot issue for me this week because I tried mowing the lawn. Between shadows in the yard cast by houses and trees and even worse, changing light conditions as clouds kept blocking then releasing the sun’s direct brilliance, I was unable to do it. Never mind that the bum leg was bothering; I just simply did not have the visual acuity to see what was cut and wasn’t. My field of vision is narrowed and my range of vision really couldn’t discern much beyond the front of the mower. I just could not do it and that is gnawing at me.
I‘ll be talking to the doctor about this after the next visit, for sure. I’ll be holding onto the hope that the next procedure–draining the silicone oil out of the eye and replacing it with saline solution–will clear out any tiny matter that may be acting as "morning ground fog" in my vision. If that’s true, I will learn to content myself with prior levels of blindness as I had earlier this year. If not...well, hopefully I will continue to prove my resilience and be able to cope with that too.
It’s been a hell of a year.

Thursday, September 13, 2012

Into the Light

This is something of a feedback/update post. The direct feedback answer is, unfortunately, "Yes, the eyesight is getting worse."
The retina reattachment procedure performed last January was not as successful as either I or the doctor had hoped. By the doc’s choice, the silicon oil remains in the vitreous as a pressure regulator to keep the vulnerable retina in place. I’d just as soon have it removed and see how things go on their own and know, ultimately, what I will–or won’t– have to work with going forward.
I do not blame my current retina specialist for the failure. I do blame Michael O’Brien at Koch Eye Associates for using the Cialis-induced vitreous hemorrhage to scare me into having the PRP surgery. O’Brien ignored that I told him, that other doctors had found it acceptable and successful to monitor the left eye retina closely but not go forward with PRP because the retina was entirely stable. O’Brien had tantalized the possibility that the vitreous hemorrhage was not from the Cialis. Time proved me right but there’s no consolation in that. If I had not done the PRP, the hemorrhage would have healed and I wouldn’t still be legally blind and losing more regularly.
Before the reattachment, things were going darker for me. The changes would be random setbacks as floaters dislodged. The aspect of the reattachment that required the vitreous to be drained solved that.
The current setbacks are not random. My experience and attention to the problem reinforces my "crazy" theory that the standard treatment of diabetic eyes is contributing to the problem. Instead of going dark, I am having increasing problems processing light. Twilight for me is more akin to what nighttime used to be. My eyes cannot seem to spread light particles to cover areas. I see light sources as glaring beacons that add no atmospheric light.
I am blinded in daylight for the opposite effect. Too much light is just too much, too bright, blinding. Concentration on the keyboard allow me to see the marks on the keys, but looking to the TV I use as a huge monitor washes out all else and looking back to the keys is all but impossible. (I type in a half-ass mix of "proper" typing and hunt and peck that gives me a respectable but far from professional word rate. I had started fiction writing–and typing–before high school and had never been able to "unlearn" my personal progress to make better long-term progress in Mrs. Sprague’s freshman year typing class.)
Instead of seeing everything going dark, everything is washing out. Direction, intensity and sources of light have a huge impact on what and when I can see, more than ever.
The degradation is not random, nor constant, but does not improve after a while.

Tuesday, July 17, 2012

Wagging Fingers

I see a positive aspect of what appears to be my social disconnection. I generally do not care what people think of me. Usually want to know what they think and why, and will take it to heart if a negative appraisal stems from misunderstanding or incorrect assumption. I will actually stress about some such misunderstandings, and those type of situations are the ones I will try to improve..
My current level of disability is perpetually one of those potential situations.
Under some circumstances and from some mental angles, I feel that way about my disabling problems. This is specific to an incorrect assumption: these problems developed because I was a "bad diabetic."
While I did not manage my sugar through the years by the ways that benefit the pharmaceutical companies as much or more than they benefit the patients. This does not mean that I was not taking care of the sugar.
My numbers typically ran higher than doctor recommendation, but I had few problems as a result. I was healthy, it maybe I should rephrase that as I felt healthy and demonstrated no ill effects solely from diabetes. The sugar certainly exerted influence, but was not the root cause. The sugar exerts influence over everything. A case of the sniffles is more like with diabetics to become full blown flue, pneumonia, strep throat, and nasal infection.
Diabetes is simple: insulin manufacture by the body or effectiveness in the body is reduced, impaired, or has ceased. The effects of the deficiency of this one hormone becomes catastrophic, and the disease becomes a circulatory disease and a metabolic disease and an immunodeficiency disease all in one. Diabetics are prone to more problems because their bodies have been compromised and taxed. The longer the patient has had the disease, the more likely they are to develop problems in conjunction with ailments that would be nothing more than an inconvenience to a non-diabetic, a.k.a. "a healthy person."
I may have a touch of hypocrisy about this, because I cannot muster as much sympathy for the same situations among adult onset type-2 diabetics. Their form of the disease usually developed from lifelong habits of unhealthy living, particularly bad diet and its usual companion chronic obesity
Type 2 diabetes is avoidable more often than not, and the correlation in Type 2 among youths and children coinciding with an increase in body fat among the same group bears this out.
My right eye declined in part due to my then-ignorance of retinapathy symptoms, but was catalyzed in 2003 by a cornea abrasion. The diabetes was opportunistic of another problem.
The left eye originally went bad as a vitreous hemorrhage in reaction to Cialis. The hemorrhage healed, but I remain impaired in that eye in multiple ways because of things doctors did, most noticeably PRP surgery that I should not have let others scare me into. Diabetes influences this outcome by the eagerness of the doctor to do the PRP, and the need for the Cialis.
The development of the Charcot foot is undeniably an effect of diabetes as these days, "only" diabetics get it.
Strangers and some acquaintances alike will never stop wagging fingers and insisting that I brought these misfortunes on myself by being a bad diabetic. On most levels, I don’t care what others say or do and I always know I cannot control the thoughts and actions of others.
I just don’t want them to get too upset when they see what finger I wag back at them.

Saturday, May 19, 2012

Charcot Relapse

The prednisone prescribed following the retina reattachment surgery had many bad side effects and a major unknown good one that it reduced about 85% of the Charcot foot swelling. Unfortunately, when I had discontinued the prednisone in hopes of feeling better, the main Charcot symptoms of horrific swelling, elevated foot temperature and old feet odor resurged.
Contrary to statistics on Charcot, I have considerable pain associated with it. Tendon and nerve damage keep things burning and throbbing. Theoretically, Charcot patients are supposed to be some 30 years older than me and have such bad neuropathy that they don’t feel much of anything going on in their feet.
Basically, when the foot swells, circulation that is poor in diabetics to begin with is further reduced. This happened to me despite my attempts to keep the afflicted foot moderately exercised. I have had two disastrous side effects of the swelling.
The first is undeniable bone loss in the ankle. My right leg is visibly shorter than my left and there’s not much expectation that I will ever walk right again. The central bone in my ankle softened, split and rotated; the tibia no longer seats correctly. The heel bone also suffered loss of mass and integrity, mostly in its central area. While the leg is so massively swelled, nutrients cannot reach the center anywhere near as well as they should.
The second result is a constant risk to diabetics but also massively increased risk while the entire leg below the knee was swelled to more than twice its normal size: infection. In a matter of two days, a cut big toe went from being a little red to massively infected with dry gangrene.
I could neither see noir feel the opriblem as it developed, so consider myself very fortunate to have a roommate who has been attentive. The fast moving infection was caught early enough that the infection did not reach the bone. If it had, amputation of the two would have become necessary.
Things are healing well; the stay at Sturdy hospital ended almost two weeks ago, and not without giving me fodder for a few blog posts about what was an almost exclusively unpleasant experience.

Friday, May 4, 2012

The Round-up

A major intent of this blog from, the beginning was to share information in the hopes of helping other people avoid some of my mishaps.
The key piece of information that cannot bear repeating enough is that boner pills such as Levitra, Viagra, and Cialis can cause permanent blindness.
The way this blog has been searched and found indicates that my experiences over the last few years almost places an obligation on me to give a less detailed but more thorough review of retina specialists in Rhode Island and New England and eye doctors who practice retina specialties.
My last post hailed Magdalena G. Krzystolik and I can recommend no one above her. Reasons include technical ability, integrity, honest communication with the patient and the fact that she demonstrated more interest in me as a patient than in patient payment. While educated here in the U.S., she was born in Europe and seems to lack American capitalist priority.
The other absolute positive referral should also be listed fist: Heinrich Krosschell. He is not a specialist but a general eye doctor. He himself knows this limit. He can give you general views by his experience but will not hesitate to tell you when a problem is beyond his scope. This honesty over both ego and profiteering earns him a lot of my esteem.
I saw two doctors with Koch Eye Associates. I recommend neither, nor the practice. Michael Negrey gained some points for looking into what could have been a thyroid problem, which others might criticize as unnecessary testing. He loses all regard however, because he has such a God Complex over his patients that he failed to communicate to me about most aspects of the cataract surgery. If I had been given the option of a lense that would have allowed close up vision, I would have a higher quality of life these days. Negrey made those decisions for me without consultation. He also utterly failed to inform me that the cataract procedure posed risk of triggering retinapathy. He failed to inform me of this despite knowing that one of his associates, Dr Michael O’Brien, was performing PRP laser treatments on me in the same time frame. Dr. O’Brien also did not inform me of the serious risk factors of the procedure he performed, including the fact that the procedure is almost guaranteed to cause at least some level of what it is supposed to prevent. O’Brien’s bedside manner was wonderful, but evoked the warnings of smiling at crocodiles. He scared me into the PRP due to the Cialis induced vitreous hemorrhage, despite being told that other retina specialists had willingly forestalled any such treatment after havin done multiple examinations of my eye. He seemed to care only about being a productive employee to Koch’s billing department.
Dr. Harold Woodcomb was one of the retina specialists who thought is safe to wait rather than rushing me into PRP laser. I saw him for a period of years and defected only when disillusioned by his failure to even consider the (documented) possibility that Cialis caused the vitreous hemorrhage. In hindsight, I probably should have stayed under his care rather than roving to people and practices that did more harm than good.
I had been seen once by a Dr. Smiley in Woodcomb’s Providence office. He attempted scare tactics to roll me into immediate PRP surgery. I can find little direct information about him as he seems to have disappeared. He no longer seems affiliated with Woodcomb’s practice and may be the Dr. Smiley working in California, but I am not sure of that.
I submitted to treatment a the Joslin Eye Center in Boston. They charge a lot of money, but no aspect of the care itself seemed to warrant their reputation as "best in the world." Dr. Deborah K. Schlossman barely examined me but added notes to my file that claimed to have informed me about things she never mentioned. Dr. Paul Arrigg seemed much better, but he strung me along for months with plans for procedures that it turned out he had no realistic intention of ever doing. In those months, the retinapathy worsened. If I had the reattachment done sooner, the outcome probably would have been better.
Prior to the hemorrhage, I had trusted my routine specialist care to John Loewenstein at Massachusetts Eye and Ear Infirmary. I sought treatment there also under gullibility of world class reputation and ceased treatment after learning that I had other developing conditions in the eye that Dr. Lowenstein could not have been bothered to indicate to even the slightest degree.
I saw Dr. Arthur Geltzer in Providence in 1998. He was one of many doctors who used the "I do this surgery now or you will be blind in six months" scare tactics to get my money. With the experience of the past few years, I believe more than ever that if I had done the surgery then, I would have been blind in six months and then been told that I waited too long to have the surgery.
Patients need to run from any doctor who uses scare tactics, particularly the six month line.
A search through the blog will lead to more details about my experiences with most of the docs and quacks on the list.

Monday, April 30, 2012

Recommended Retina

The retina reattachment surgery in January had been performed by Magdalena G. Krzystolik of Southern New England Retina Associates
I heard of her from a former tenant, one who had undergone a successful procedure and spoke highly of this doctor. One medical professional I consulted knew her; he stated that her technical ability was outstanding but that her bedside manner not always so commendable.
I will always choose a competent and communicative doctor over a "nice" doctor.
My sense has been more that Dr. Krzystolik "has her moods." In addition to the surgery, I have had perhaps eight other appointments with her. She can be terse and unfriendly. But when my appointments coincided with her more "sociable moods," she really hit it out of the park with apparent comprehension of some of the less direct impacts of what has been happening to me.
A doctor with good bedside manner may maintain that reputation by giving no bad news or realistically grim possibilities in the outcome. Dr Krzystolik remained clear and honest with me about good and bad possibilities. I find honesty more important than friendly smiles and cheery optimism that may not even approach the border of realistic.
I commend and do recommend Dr. Krzystolik despite the fact that the retina reattachment surgery has not seen the success either she or I had hoped for. By the time I got to Dr. Krzystolik , the damage activated by Dr O’Brien’s PRP laser had progressed too far and for too long, thanks in large part to the indecisive delays by Dr. Arrigg at Joslin Center.
Blog readers know I am not afraid to point fingers or name names when it comes to the doctors whose offices I have passed through. Yet even while being direct, blunt, and sometimes angry, I have striven for truth and a level of fairness. I bring up Arrigg and Michael O’Brien specifically in this post to give any new google search reader of this post an idea of some balance in my opinion. Anyone searching for a retina specialist in Rhode Island and southern New England should be considering Dr. Krzystolik and her practice. No doctor may be able to deliver the desired results; at least Dr. Krzystolik has the integrity to deliver realistic expectations instead of hopeful but ultimately empty promises.

Tuesday, April 24, 2012

Rocks and Hard Places

I’ve run a gamut of other problems since January’s reattachment surgery. I’ve discussed the cause and effects of the prednisone that I needed to drop in my eye. Prednisone is a steroid that is as much miracle drug as aspirin, and it is the only medication I have ever taken that has given me bad effects.
Discussing the bad effects with the eye doctor who did the surgery and prescribed the prednisone seems to have extended my reputation as a bad patient. That doctor insisted that the side effects I was feeling, particularly the nausea and vomiting of excess stomach acid production, were signs of other diabetic problem. I’m not such a believer in coincidence, given the timing of the problems’ onset. The doctor insisted that the dose was small while ignoring any research I has asked about that cited eye drops as one of the most potent absorption of medication. After two months of discussing this with her, I got allowance to discontinue the medication.
The side effects subsided. I can only wonder what has happened to medical training that every doctor argues with me when I report and effect of some sort of treatment. I simply pay attention to how I feel and what is going on with my body and the timing in which things change and develop. Why does this make me a difficult patient?
My blood pressure plummeted, the nervous tics diminished, vertigo became less of an issue, and my stomach seemed to pump acid back at normal levels, enough that fruit and proteins were not making the tummy erupt. The timing of improvement coincided exactly with the discontinuation of the prednisone, so I can only beat my head against a wall and wonder why every such thing had to be an argument with almost every doctor. I don’t claim to know more or be smarter than the docs. I just pay attention to my body and report what things do to me personally rather than generalized statistics.
My follow up with this good eye doctor is tomorrow, but I have already resumed the prednisone. As it turns out, the steroid–and not times, inactivity following the reattachment surgery, or another factor–caused that sudden recession of swelling in the Charcot foot. Pain and swelling both resumed with a vengeance. It’s worth the ill effects to have the legs slightly more usable.
My eye and foot doctors alike just need to be prepared for a difficult patient if either or both try to tell me that the leg condition is caused by something else entirely and that the timing of stopping and resuming the prednisone is strictly coincidental.