New Member Introduction_Caution! Not a Woman of Brevity!

[shaktisluv]

Greetings all!

Not seeing well today, so please forgive my typos!

I know I've been dealing with RCE's for at least two years. Lesson learned, when you have "mysterious" shooting pains in your eyes at night, go to the opthalmologist (NOT your GP)! I know, even that can be a 50/50 proposition. Data entry/Proofreader/desktop pub applications in printing industry my whole life (I'm 50), and for at least a year before the wake-you-up shooting pains slowly emerged after back surgery (pain meds?/can't sleep for long?),I frequently felt like I had a foreign object in my eyes, often the left. Blamed it on eyestrain.Then had a (sp?) Chalziron in the center of left eyelid the whole summer B4 back surgery in Jan. 2008. Then I lost my job and have been unemployed since!! The "free clinic" doesn't know how to diagnose this sort of thing. Friends drove me to the Critical Care office (and led me in and filled out the forms) the evening after St. Paddy's this March 2010 (they'd fed me a wonderous corned beef dinner!) and I was told to "get thee to the Opthalmologist or ER first thing tomorrow, or you may lose your sight." First major erosion. Ya think I had one too many Guinness the night B4?!! (I only had two!)

As an aside, I have suffered from Fibromyalgia for 17 yrs. It's weird, but I was having some pretty typical (for me) FM sinus drainage/head/neck/jaw/deep ear/face/tooth/eye pain, on the left side (typical that it'll "switch sides" too) for about three weeks prior, but much worse than ever B4, and for sooo much longer than usual. We Fibromites, and our doc's., blame everything on the FM. Guess what? Within about two minutes of the doc putting the anesthetic/stain in my eye, ALL of my pain was gone. I BEGGED him for more drops! Sigh. I can tell which eye is going to be the most problematic now by this symptom cluster, however mild.

Can anyone relate to this? I can't get any insight from my eye doc. I totally comprehend trigger points and pain referral, so I'm not too surprised. Eyes have lots of nerves.

Also wondering . . . I had horrible hay fever growing up, from August until first hard freeze, til I had a series of allergy shots my Senior year in High School. Funny, I think Clortrimeton was even available by the 70's (no AC at school!). Any data or experience to correlate corneal or basement membrane damage as a reult of digging my eyes out daily??

My glasses are usesless now. Eye doc said to get a "weak" pair of readers. Does that mean I s/b very careful about not going too strong? I had wide-angle w/bifocals. Could drive w/out glasses. My eyes have been blury for so long, I'm afrid to get ones that are too strong. I have magnifying glasses everywhere now! How does one decide a "happy medium" in glasses? He has no advice!! Grrr. I'd go back, but no insurance and no income.

So, for now, I'm "getting by" as cheaply as possible.Will try the Saran wrap next I think. Looking for protective glasses for when it's windy. Genteal Gel PM, was using Refresh gel for AM (even B4 erosin), switched to Systane Ultra today just to try something new. Will get the Dwelle soon. Water water everywhere. Use warm and cold compresses, depending (and ice when whole head involved). And for once having a teeny ap't. when I'm blind is a good thing. It's just me and kit kat.

I am so very grateful I found this site. Lots of wisdom and encouragement and helpful daily advice NO DOCTOR will ever tell you it seems!! "Here's some drops, go forth and heal thyself!" BAAAH!

I'm working through everything here little by little, and just even knowing that progress is possible is helpful. After 17 yrs of FM, I know all about acceptance (some days, not so easy!) and keeping yourself educated. And you're not always going to see that advertised on TV, folks. Like, the side effects are worse than the pain, and I'm already exhausted? Nope.

Anyway, I think I broke my soapbox!!

Gratitude for all of thse who have come before and shared, and my sypathies and understanding to all of us lucky to tread in their footsteps.

~Suzanne (Kitty says "get off the PC and PAY ATTENTION to ME!!)

[liz56]

Hi, Suzanne.

I'm sorry to hear about all of the pain-- especially the rces. I suffer from them, too, but my case might be a little different from yours.

I kept a blog that chronicles my progress (and often a lack of it) for the just-under-a-year process that got me out of rces. I'm still really careful, and my life is really changed, due to dry eye and the fear of an onset of rces.

Here's my blog, just in case there is something in it that might help you. It's just my experience, and I in no way claim to have the answers. I just remember being so in need of something that might help and wanting to find others who were going through it or had gone through it, too. I got lots of assistance here at the DEZ, and I know that you will get that, too.

I hope that things improve for you!

--Liz

[shaktisluv]

New Member Introduction_Caution! Not a Woman of Brevity!

Hi Liz!

Thanks so much for you generous reply. I know many people have had MUCH worse pain than me. I also know about the sleep depv., if anything, because I have Fibromyalgia. It is the definition of it! Wake up feeling like you've been hit my a Mac truck (and I have!!). Plus related insomina. Yea, you loose your marbles. WHY do I think I need to get out of the bed in the AM? Do I have a purpose in life anymore? GET A CAT!!!! Or a dog I'm sure too!! LOL!

I have read your blog, and I am so grateful for it, and I read another person's RCE blog that I am also grateful for (heck, i'm grateful for everything you folks share!), but my pathetic FMS (fibromyalgia) brain can't remember names for long. I know you posted it on the RCE page. Thank you for your diligence!

I am still curious about how RCE compares to people with or without Fibromyalgia,and hope I can get some understanding about that, because it will help me cope beter I'm sure (I refer to it as FM, though I suppose FMS is "more" correct, just like RCES--syndrome --"they" don't have a definitive medical test to determine it -- though there actually are many for FM, just expensive). Like RCES. "Syndrome." Doesn't "translate" well to the medical community. PFFFT! Getting the FM diagnosis is just like getting the RCE diagnosis. Not great, but at least you know. Start to learn coping mechanisms if you're lucky.

One thing I'd like to share to all who intersperse cold with heat for spasm and pain relief (maybe I should post it elsewhere?) that I learned from my mom's PT friend, when mom had knee replacement surger(ies), is to put one part "rubbing alcohol" to about three parts water into a Ziploc/Gladlock bag (not the ones with the "pull tab") and freeze. I've found more water, less alcohol works better and re-freezes more quickly.

I keep a few different sizes in the freezer. I also DOUBLE bag them (opposite "zip" ends), as they tend to leak anyway. But I put them through their paces too--sit on them, lean against them. and such. THEN I wrap in a "sack cloth" plain white cotton kitchen towel. No different from expensive gel-packs I've gotten at drug stores or PT so far. Cheaper/and cheaper to replace, too.

I always have two in the freezer. They conform to various body parts so well, and re-freeze fairly quickly.

Well. I will keep reading. Today is my first day in two weeks that my R eye hasn't been so blurred that I don't have double (triple?!) vision. As I know, could be coincidence, and I was soo unsure yesteray about the new choice in drops (Systane Ultra -- both eyes felt like they had "flaps" that were being lifted up by my eyelids all day yesterday, even with the new drops late afternoon, and it felt like the drops were making it worse), but they are better today! No foreign object feelings today.

I know. But it's good to have a better day, as we all konw.

For all of you kitty people out there:

What the heck can I do (no, I won't keep her out of my bedroom. She's the only thing keeping me alive!) when your furrkid wants to knock your drops off of your nightstand for sport/to wake you up??!! I'm thinking of maybe making a little pouch and suspending it from my headboard (sort of an "Arts and Crafts" thing with slats). Of course, prob is that I know I NEED to be able to grab my drops when I awake B4 I move. Any insights very much appreciated!! I know there are lots of folks w/ great insight out there. Thanks for the permission to share/blab!

Peace!

~Suz

[liz56]

Hi, Suz.

Thanks for the good tip about the ice packs. I use a damp cold cloth, but if I need an ice pack, I will remember your tip!

I'm glad that your vision is better.

On the eye drops, it might work if you have pjs with a pocket to put your bottle / vial in there. When I have slept over in places where the nightstand is too far away or there is some other awkward configuration, I have done that.

I'm glad that you had a good day today. That's all we can ask.

Best wishes,
Liz

[shaktisluv]

Continuing Thread

Sorry, my cut and paste isn't quite working. Still learning!

Sleep Pants/w pockets are something I've considered, but It's hard to find them for women! Got a pair of Men's B4 surgery, but mostly wear whitey tighties and a tank top for summer. Can't afford AC!

Great advice though!

For now, I mostly just awaken when kitty's "doing her thing", and try to push her away from said bedside table. Maybe she'll learn. Then she's usually ticked at me. Oh well! I rule, eh? Sad frowney face. . .

I know.

So I guess there's all these storm warning's I'm supposed to pay attnetion
to. I can't imagine living through the floods people have dealt with. OMG.

~Suz