Tuesday, December 09, 2008

The Sahara: dry eyes, Sjogren's Syndrome, health abnormalities

I can see again! Well, most of the time I can, anyway. I don't think I have ever written much here about my vision problem and what causes it, so I will share with you a bit of information on that. I have a disease called Sjogren's Syndrome (pronounced like Show Grins), which is an autoimmune disease that leads to drying of the mucous membranes. The main symptoms are dry eyes and dry mouth. This is no mild kind of dryness, however. No generic eye drops for $2 solve this problem. In fact the dry eyes become so severe, in my case, that I cannot produce tears. Opthomalagist have a test they perform to measure tear production. It involves having a tiny strip of paper stuck in your eye to measure the tear flow. In 1999, I had that test done at an eye clinic in Baltimore, where I was living at the time. The young doctor brought in several other staff members to say, "Look how dry her eyes are!!! She has Sjogren's!", because my eyes failed to produce basically any tears.

I was not diagnosed with Sjogren's by anybody else until about eight years later. I first became physically sick around 1995 when I was 20 years old. I was diagnosed with Fibromyalgia - a muscle pain syndrome which many doctors do not consider to be a very serious problem, and even more doctors did not think it was in 1995. I was told I probably also had Chronic Fatigue Syndrome. In 1999, I saw a specialist who studied Chronic Fatigue Syndrome, and she said I did have it and I also had chronic Orthostatic Hypotension - which means, my blood pressure dropped when I stood up, instead of rising like it was supposed to.

Bear in mind here that before any of these diagnoses were given, I was already diagnosed with depression and prescribed antidepressants. As you might guess, the first answer most doctors had for my physical complaints was that they were all psychosomatic and would go away when I was no longer depressed. They were all wrong.
And I was never "just depressed".

In 2004, I saw a new rheumatologist who said I had Rheumatoid Arthritis, based on my blood work. By that time I was already receiving disability benefits and had been unable to work for years. I was already in daily pain for many years. The future was not looking too bright.

In 2006 - having moved a couple years before - I ended up at yet another rheumatologist's office. She said she is not sure about the RA, but that I definitely have Sjogren's and probably Primary Sjogren's (meaning it's the main problem as opposed to having Lupus with Sjogren's as a secondary problem), though she's not sure of that either.

My dry mouth problem, which had, by then, led to horrible tooth decay and gum disease, was treated for a while with a medication called Salagen. I have not gone to the rheumatologist for about a year, and I definitely need to go back and have that prescription renewed. I also tried Plaquenil - a medication used to treat the autoimmune part of Sjogren's, and then the rheumy took me off of it to see what would happen with my symptoms. Last year I also tripped and broke my ankle - all on my own in my apartment, and was told that I have Osteoporosis too.

For a while, this past year, I did not want to bother with doctors at all. I was able to see - meaning my punctal plugs in my eyes were working. These are tiny pieces of Silicone and other materials are put into the tear duct areas of the eyes, to save tears. I went for some time without daily Restasis - an eye drop that helps with severe dry eyes - but recently, when my Seroquel was increased, the dryness increased to the point that I could no longer read. Dry eyes cause blurry vision, which gets worse throughout the day. I have been on a lot of different medications over the years and had a lot of times where I could not see well enough to read. Often the medications are to blame for worsening my dry eyes to that extent. Such was the case with Seroquel.

I went back to the dry eye specialist eye doctor I found a couple years ago, and had some plugs replaced. He had me go back on the Restasis drops four times a day, and I'm also using artificial tears during the day at work, so that I can read. I had my Seroquel dosage decreased back to 800 mgs. For these reasons, I can read what I am typing right now, which is a big improvement from the blurry vision of the past couple of months!

I have some thoughts on how someone would - seemingly at random - happen to have these health problems in addition to Schizophrenia. I don't think it's random. I think there is some underlying cause to the entire situation which will probably be well understood by the medical profession sometime after I die. I also have a few relatives with other health problems, and I don't think these are all coincidences either. For example, I have slight hypothyroidism and so does my mother and both of my grandmothers, I believe, are also on thyroid medication. I was diagnosed in 1995 or 96 with "irritable bowel syndrome", and I have several family members, on both sides of my family, who either have that or Diverticulitis or some other related GI problem. My sister has Epilepsy and I would not be surprised if whatever is the underlying cause for that is also the underlying cause for my health problems, and we will probably never know the answers to these questions in our lifetimes.

So that's the situation with Sahara Desert Eyes - or Sjogren's Syndrome. The dental decay has also led to me having numerous teeth pulled out because I couldn't afford root canals and I have no dental insurance or money to pay for dental care. Medicare and Medicaid do not cover dental care for adults at all. I no longer have Medicaid anyway, because I am not eligible for it since my part time job last year earned me too much money to be eligible. As you may be aware, there is no dental care that comes cheap, even for people who are on disability. So you deal with the decay or you get your teeth pulled out, and that is basically all that can be done.

Sjogren's can also lead to problems with major organs, and cancer, and other things, but hopefully I will not run into those any time soon. I have enough on my plate with Schizoaffective Disorder, Endometriosis, Sjogren's Syndrome, Fibromyalgia, Osteoporosis, and some related other things for now, and, as a rule, I try to never think about any of these things if I can possibly avoid doing so. I have learned one thing above all others about health problems over the years: the more you think about them, the more depressed you will be. Better to not think about it when possible. That is my philosophy. I choose not to let me life revolve around illness anymore. In some respects, this may not be the best approach to take. My failure to pay attention to my health for most of the past year led me to having dry eyes again - which will take a while to resolve completely - because I stopped using the drops that can help prevent this problem. So I still have blurry vision and will continue to have it much of the time for months, most likely.

On the other hand, I could spend all my time and energy going to doctors' offices, and watch my entire life turn into a depressing tale of woe involving constant condescenion by arrogant medical praciticioners and rounds and rounds and rounds of tests that lead to no real answers. I prefer to not do that with my life now.

5 comments:

slowhandfan said...

Your story is breathtaking and you have both my sympathy & empathy as I've been there, done that with most of yoru issues. I am a tech ditz & know nothing of the blog world but just created a bare bones blog. Reading your story I feel like I've met my twin. Would lke for u to contact me at my blog so we can connect, & perhaps btwn the 2 of us, figure out med solutions or at worst share our war stories. Thx for sharing.

slowhandfan said...
This comment has been removed by the author.
Pooja said...

Thanks for sharing your experience. Chronic Dry eyes develop due to the eyes not producing adequate amount of tears. There are many symptoms of chronic dry eyes which includes itchiness, prickliness, sensitiveness to light, blurry eyesight, dryness etc.It develops as your age grows, menopausal phase or medical disorders. Turbulent weather conditions, smoke, air-conditioners and heaters, constant wear of contact lenses can increase the risk of dry eyes. For more details refer chronic dry eyes

Ryan Donovan said...

Very nice post. Thank you for sharing your experience and giving me a better idea on how difficult it is to have eye complications.

eye test

Ryan Donovan said...

Thanks for sharing your personal experience to warn others regarding eye complications. Having an eye complication is really difficult and I admire you for how you're coping up with it.

eye test

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