Monday, November 29, 2010

Disappearing Dragons and Spoonie Support

It appears that the major flare up that I've had for the last few weeks is going away. Thanks to everyone for their thoughts and prayers throughout the whole ordeal. I never thought that I would be so debilitated again, like I was post spinal surgery, but alas, Stills comes into my life and I can't do a damn thing physically. Its like I'm a two year old. I can tell people what I want but the only thing I can do for myself is go to the bathroom eat and sleep. Oh yeah, and there is always a nap time worked into a day.

I have found a lot of satisfaction in finding the website where everyone understands what it's like to have a chronic invisible yet debilitating illness. It's a great online support group and although it's not specific to Stills disease, the people there do understand. We call each other "spoonies" and there are great articles, some that make you laugh, some that make you cry. They make it feel ok to just say, "I can't do xyz today, sorry!" without feeling guilty. What a wonderful thing.

Thursday, November 25, 2010

Thankful for?

It's hard to stay positive when you have such a debilitating disease. We as "spoonies" (see post on the spoon theory for the reference)actually have to learn to think about everything in a different way than a "normal" person in order to stay sane.

And sane is a very relative thing. To me sanity is thinking clearly enough to be able to focus on something, anything, other than my disease. I am slowly learning to divert my attention to other things when it gets to be too much to handle. When I want to cry, I hug my dog, or I strike up a conversation with anyone who will talk about anything that doesn't involve my disease. It's a challenge, but I'm learning.

I have to focus my energy on the positives in life, and when you have a chronic illness, it's one of the hardest things to do. But it is possible. So, I can't lift a gallon of apple cider, but I do have a great husband that is willing to fill up my glass. I can enjoy the smell and taste of it, even though it hurts to twist my wrist to take a drink.

The biggest thing for me is that I am truly thankful to have a family, both immediate and extended, that are trying their hardest to understand what it's like to have Stills Disease. I know my Dad often researches new treatments for autoimmune diseases, and reads every word of every article I email him. My mom (god bless her) actually will sit with me and let me complain for hours on end about my aches and pains, and drives me to every appointment I have. My husband, although he has never broken a bone or never been sick, tries so hard to process and understand what it's like to be in bed or on the couch all day long, as well as rubbing my back when I have a good cry. My little corgi Bomber, knows when and where I hurt and licks my wrists and ankles when they flare. My extended family reads this blog and does a little research on their own to learn about the disease. And they pray.

I don't think they can even imagine how much that means to me. I don't want sympathy, I don't want tears. I want support and love, and that is exactly what they are giving me. (including when i disappear from the table for a nap, and no questions are asked, except maybe "would you like a blanket"). They know not to say "but you look good" or "you feeling any better?" which hurts more than it helps. (if it does come out I just reply "don't go there" and I think they are getting it).

Anyway, as we celebrate this Thanksgiving, I don't want to dwell on the negative. The aches, pains and fevers aren't going away anytime soon, so forget them. I have an incredible family that "gets it" as much as one can without actually suffering from a chronic illness. And if they don't understand, they are trying their hardest. I can't ask for more. I am lucky.

Tuesday, November 23, 2010

Endorphins, and crying to make them work

I just had a good cry. Its solely from the pain I'm in. I am at my max for medicine for the night. So crying seemed my only legal option.

Matt rubbed my back while the tears flowed. Then we diverted our energy to bringing the dog outside and playing fetch, well they did and I just watched.

We came back inside and although the pain is still raging through my body, it doesn't all seem so bad. Guess I got those endorphins going. Heard they help with pain. Someone was right.

So if you are hurting, just let it out. You will feel much better afterwards.


I'm still here...meh.

So, after all of the late September hype, it's definitely NOT lymphoma, and appears to be Still's Disease after all. But from what I have discovered from talking to a number of people out there with AOSD, this misdiagnosis is soooo common, more common than finding another person with Still's actually! So the cancer is ruled out.

In some sick sort of way, I was hoping in a way it was lymphoma, so I could go head first into treatment then be ok, in remission. But its more likely I'm stuck with this disease that has me pretty much tied to the house 24/7, when I have a flare, which for the last month has been pretty much daily. Oh and god forbid i do decide to do something, I pay for it the next few days.

Like I just ended out canceling my long awaited hair appointment in NYC that was supposed to be tomorrow, because I know if I went, I wouldn't make it up to mid Hudson ny for thanksgiving. Unfortunately I still don't know if I'll make it. I going to try my hardest though. I know hubby is getting sick of going to family functions alone. I have a feeling it will be like that until I get an official diagnosis, although my new rheumy (yeah, didn't work out with Cohen) is very versed in AOSD and is pretty sure it's that. My entire blood panels have to come back from the infectious disease specialist (dec 5) and then I see the rheumy the following week.

If you do ever decide to switch doctors, make sure to get copies of your records to bring with you. It may be saving me another few months on getting an actual diagnosis. Yes, this rheumy thinks my old one was a quack too, so is starting over, but at least she doesn't have to retest me for everything. I need to save the little anemic blood that I do have left, right?

Oh, and as a side note, I have been on govt. Disability for two years now. How the heck do some of you work full time jobs while you feel like this? You are more stubborn than I am, which is saying a lot. Then again, through my multiple disabilities starting at 23 years old, I have slowly begun to stop being stubborn and start listening to my body and just speaking up. Just food for thought.


Monday, November 22, 2010

The Spoon Theory

Ok, so it's not really a theory, but it's by far the best explanation I have ever heard of what it's like to live with a chronic debilitating illness. Since is a copyrighted piece, I can't copy and paste it, but it's a must read. For whatever reason, my lovely iPad isn't allowing me to hyperlink, so please just copy and paste into your browser. It is very worth a read.