Other things besides eyes

[Lucy]

This portion is not used very often and I have something I'd like to add. For those suffering from Sjogrens or other autoimmune disease, it is so important to try and get relief from your illness. I'm speaking about everything but eyes right now.

A year ago, I was terribly sick and did not know what was wrong with me. I'd had a case of shingles that was very painful and I was sick before and after the rash, which lasted 5 weeks or so. It cleared up but I kept getting sicker. Fast forward to Sept 2006.

After going through a rheumy who was the equivalent of a used car salesman, I found two others who knew what they were doing. I was started on meds, lots of them. I have added more meds since then. Some of the meds take 6 months to a year to work, so I may not be feeling/seeing the best they have to give yet. I am feeling so much better systemically after taking all this stuff. I take about 20 pills a day, maybe 12 different kinds. I went shopping today by myself and actually lasted a good two or three hours. Last year at this time, I wasn't even able to drive myself to the grocery store.

Now the subject of eyes. Not much has changed. They are the torment of my life. They guide most of my thoughts. They hurt 24/7. I have every conceivable drop, gadget, mask, glasses, goggles, Boston Scleral Lens available, so there isn't much more I can do. But, but, but........since I feel somewhat human again, I can cope with my eyes much better. I can do other things. I can exercise, go shopping, watch tv, have lunch out with friends. If I had not gotten the Sjogrens under some kind of control, I'd still be stuck in bed under the covers 5 days a week. Too weak to do much than go from the bed to couch and watch a little tv. Because I'm trying to be healthy and strong as possible, I manage to deal with the scruffy eyes. Sometimes, I can almost feel myself want to scream to the world about them. It won't make them feel better, though.

I feel lucky that I have the medical help that has brought me from feeling like a dead person to one who is very much alive! I still have bad days. Sometimes once or twice a week, I manage to do nothing at all and that's a stretch. Overall, the medicine is working! It's just not working for my eyes. There is a possibility the Plaquenil will work on the dryness issue yet though and I'd get some relief. Wouldn't that be great?

Lucy

[Rojzen]

tipping my hat to Lucy's wisdom

I am very moved by Lucy's account, and wanting to convey that I am in awe of the strength she has shown through the period when there was only malaise, weakness, complete debility. . .My own dry eye started after a bout with a strange, debilitating ailment that seemed to spike my anti-nuclear antibodies (ANA) sky high . .but which then did not pan out to any really recognizable autoimmune disease, though I do have fibromyalgia. . .The all-body illness was itself devastating. . .but when I realized that my eyes had somehow been damaged by the illness, and that I was going to hurt eye-wise, and be too sensitive in the eyes ever to be normal again. . .Wow. . that was the low point. . .Lucy. . .I hear you. . .

As in Lucy's case, conventional meds ultimately (albeit indirectly) gave me life, again. . .First it was Prozac. . .without which I couldn't have somehow flown myself around the country to get help . . .Later. . .a tricyclic that numbed my eye pain for a good while. . .Ultimately, Restasis, which helps with the pain and light sensitivity. . .Not too long ago, I considered these things poisons. . .Eventually, though, I realized it was silly to sacrifice a life on an altar of a commitment only to things "pure and natural". . .

I spent much of my adult life studying alternative (particularly energy-based) healing therapies. .but when no practitioner in this realm (even one of the most famous homeopath's on the planet) could make even a dent in my eye condition, I had to conclude that holism and energy medicine are in their infancy. . .and that these may not become useful to us in our lifetimes. . .

Anyway. . .to Lucy, I tip my hat, because she is brave enough to thank pharmaceuticals, giving them their due, at a time when it isn't always chic to do that. . .

Along these lines, I have to say that some of the most compassionate and unstoppable healers I've encountered over nearly 9 years of my DES and related illnesses have been plain old conventional docs and bench researchers. . .My ideal is still the homeopath or the acupuncturist who wields miracles. . .but figures like these are a few generations away, yet, and those practicing in these areas, right now, are sometimes a bit too engaged with the trappings. . .and too little focused on results . . .

Apologies for the length. . But bravo to Lucy, and may her healing continue and reach into her eyes, at last!