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taffylinden

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 #46 
Dang, Cake, STILL? I'm so sorry you're still dealing with so many of those. And thanks for the heads-up, but I worry about you anyway.
shutterbug

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 #47 
Taffy- Sending healing thoughts and hugs from the foothills of California. You have been through so much with your eyes and I hope that everything works out for you.
taffylinden

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 #48 
Thanks, shutterbug. My eye is feeling a little better today, so I'm hopeful the drops are working.
Moiraine

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 #49 
Taffy, I've just read this entire post.

I am really sorry for the loss of your cousin.

I am also sorry about what you are going through with your eyes. Am I to understand that your eye problems are side effects of medication to treat lupus? If so, that is very scary.

Also, you seem to be a very compassionate and caring person.
upstater

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 #50 
Glad to hear your eyes are feeling better...hoping the trend is continuing!
Cakelady

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 #51 
xoxoxo
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taffylinden

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 #52 
It just hit me how ironic it is that a post entitled "Rejection" has so many caring, supportive replies. What kind people! 

I see the eye doc tomorrow. Most of the time I think the eye is better, but that toxicity thing is uncomfortable, so it's hard to be sure. Really, how can it NOT be better with steroid drops every hour? I feel like I'm chained to that little bottle, but I'm trying to think of it as a sort of liquid SWAT team, arriving every hour to clear out any bad guys. Yes, my eyes are a bad 70s TV show! :)

Moraine, the answer is "sort of." I have three major issues:

keratoconus: cornea (clear "window" on the eye) is shaped like a football, not a basketball. I have had corneal transplants for this. People with lupus seem to be at increased risk, but the risk is tiny, so the increase in risk is even tinier. 

iritis: inflammation of the iris (part of he eye that's brown, blue, etc.). This leads to rejection. Lupus increases the risk of this, too, when lupus affects the eyes.

retina damage/glaucoma: these are in the left eye only and in my case are the (rare) result of Plaquenil. "Rare" means less than .06% of people on Plaquenil, so it's still a very safe medication. I'm just weird. There's a test that shows if the damage is caused by Plaquenil, and mine was. 

I hope this clears things up a little. Don't be afraid of Plaquenil. It's a good medication. I'd still be on it if I could be. 

Cake, how are the migraines??
Moiraine

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 #53 
Taffy, thank you for explaining. I am sorry for what has happened. I would hate to have to be chained to the eye drops every hour.

I hope that the eye doc appointment goes well tomorrow.


taffylinden

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 #54 
Thanks, Moiraine! Sorry I misspelled your name before!

The news was mixed, but that glass looks half-full to me! There is slight improvement in the rejection. (Yay!) However, it's little enough that he'd be injecting steroids IF my eye pressure hadn't gone up to 28 (normal is 12-21). Steroids increase eye pressure, though, so he's letting me go down to drops every 2 hours. (Double YAY!) I have to go back in a week. If the pressure isn't down, he'll put me on stronger glaucoma meds. 

I am counting my blessings.


Cakelady

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 #55 
Migraines are still there to make matters worse Mikey's cat went out Sunday night and never came back. This is his comfort cat and he's very important to Mikey and for those of you who don't know Mikey has austin and mild retardation. We told Mikey yesterday that he was missing and Mikey wouldn't talk to me.

This morning I was up at 2 am from pain etc I was just about the turn off the TV at 7 am when the phone rang and they said I think your cat is on our roof. I jumped up got dressed called hubby and Mikey then I spent the next 3 hours trying to get him down and yes I climbed a ladder.

California weather is not helping matters one day hot the next day cold. Never ending

I am very happy that you got some good news regarding your eyes.


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taffylinden

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 #56 
I am not going to scold you for going up the ladder because I'd have done the same thing. Did you get Comfort Kitty down?

Migraines are h e l l on earth. I REALLY wish there were something else docs could do for them. You have too much on your plate as it is.
shutterbug

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 #57 
Taffy - glad that you got a small amount of good news. Hopefully things will continue to improve for you.

Cake- You climbed a ladder? What are we going to do with you?
Baker1

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 #58 
I would have yelled at you too, but I know what you were going through with your son and that he wasn't talking to you. You did what you had to do. The cat was missing for several days and needed food and water, rain doesn't count. I'll bet your son is jumping for joy. Now you just need to relax. You know we all care about you.
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Moiraine

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 #59 
Hi guys. Sorry that I've missed a day or two. I've felt like s**t. I really don't want this to be lupus, but I also don't want this to be my neurological illness  be getting worse either. Eh, can I just go stick my head in a hole and pretend things are fine?

No big problem about the name, taffy. I use this name on a couple of boards. A lot of people spell it wrong. Moiraine is my favorite character in the Wheel of Time series by Robert Jordan and (later) Brandon Sanderson.

Taffy, I hope that the pressure is down in your eye next week. We'll take the glass is half full and run with it. I've got my fingers and toes crossed you have good news next week.

Cake, I am really happy to hear that Comfort Cat was found. I am very sorry to hear about your migraines. I don't know your history, so I am guess that drugs like sumatriptan don't work for you. I'm also guessing that you've identified triggers like being hungry and such...and you are still plagued with the bleeping things. I am so sorry.
krismarie

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 #60 
Hi Taffy, sending my condolences for the loss of your cousin. I also understand how stressful it is when faced with such serious conditions and uncertainties of the eyes after my husband faced the possibility of sudden blindness in potentially both eyes in his early 40's requiring aggressive surgery followed by me administering multiple drops every couple of hours and him lying face down for weeks, sedated and motionless.  Then a couple years after that, repercussions from the other surgery requiring another surgery...then a few years later, here we are again. It's very scary, I hope everything works out for you.

If you don't mind me asking, how long were you on Plaquenil and what dosage?  After my husband's horrible experience almost going blind, which had nothing to do with Plaquenil or lupus (he is totally healthy), I eventually made a choice to wean myself off Plaquenil in 2015 because I thought the potential risk outweighed the benefits I thought I was getting. Were you being seen by an ophthalmologist and having the proper screening on a regular basis but it was not detected in time?  This is my fear and the very reason I do not want to take a chance with this medication any longer because the only perceived benefit was decreased joint pain and I have a high pain tolerance.  I was on it for 5 years and it never helped my fatigue or concentration but about 5-6 months after I weaned myself off of it, so many problems started happening over time.
 
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