Friday, January 18, 2008


After a very scary few months, at last we know where we stand.
The discomfort and symptoms I have been having are due to "structural difficulties" combined with the severity of my arthritis.
A combination of the very, very large piece of mesh I have inside me and my weight means when I sit upright or get jostled (like when riding in a car) it really messes with my abdomen. The good news is I have lost 20 pounds in the past 6 months, and this provides me even more incentive to keep at it. The hope (no guarantee, but a hope) is that as I lose weight, I will be able to sit up and ride in cars.
The elevated temperatures are from a combination of my high pain levels and the damage to my bones when I walk. I am not supposed to walk, but our home is not fully accessible. We will do the best we can to make certain I needn't walk except when absolutely necessary (like when using our bathroom or going into the bedroom) but we aren't there yet. The stool I have in the kitchen for use when cooking isn't rated for my weight (it's the only one with casters available that we could find) and has already been replaced once, so it is not a good long term solution.
The good news is that surgery is not in the near future. (YAY!!!!!)
The bad news is I found out not having a spleen is even scarier than I thought. If my temp goes above 101 degrees, I am supposed to go to the emergency room. If I get a persistent cough, I need to be seen by the doctor each and every time. And visiting Cape Cod is right out. (I had no plans to visit, fortunately.) Apparently there is a disease carried by Cape Codian deer ticks which is dangerous for anyone with a compromised immune system. Who knew?
The specialist I saw yesterday wants me to be referred to a pain center, and to an infectious disease specialist.
It would be good to have less pain. I had no idea it was so hard on my body. I hate taking too many pain pills. I don't like the wooziness, and I already feel like I take too many pills for various ailments. But I will cut out the stoic nonsense and take them every day. I'd rather take a small number of pain pills than feel all muddled from the fever every afternoon and evening.
Anyway. Hope this wasn't TMI.


Lynx said...

pain pills suck, but pain sucks more. CONGRATS on the 20 pounds!!! (I think I found it, but I won't send it back--LOL). I just started a Tai Chi class this week, you would love it. Even in your wheels, you can still do at least half of the movements (according to my teacher, who should know). Keep up the great work, and for crying out loud take care of yourself! WE LOVE YOU!!!!!

AlisonH said...

Hey. I go totally deaf on NSAIDs. You need'em and you can take'em, then I'm glad you can take'em, that's what they're for: making life a little more comfortable. It's okay to do that.

Marietta said...

I discovered that when you take pain meds regularly, the wooziness goes away (on the right meds for you), and that my body really responds to the daily pain reduction by feeling more "normal" if that makes any sense. So go for it! Daily doses are different than just using the meds for "bad days" as I've found out myself. (((hugs)))

ColorJoy LynnH said...

Whew. No surgery is such a relief.


Mokihana said...

So glad no surgery! And you inspire me with your weight loss... way to go!! Living with chronic pain is the pits; I'm glad your wonderful creativity helps to allay that.