Friday, July 29, 2011

I swear I'm pushing people away

I was hurting before this week, but now it's even worse. It's not in my muscles. It's in my knuckles, neck and lower back. According to my blood work, though, I'm not having inflammation problems. At least, not 1.5 months ago I wasn't.

I took the kids to the pool twice this week. Great exercise. I know my rheumatologist will be happy to hear I haven't just been sitting. We have also walked around. Not speedy, mind you, but we have. I actually feel a difference in my body, which is good.

However, Wednesday when we went to the pool, my 4 yr old wanted to jump off the side. I was standing to catch him. I had to turn my head because my oldest jumped in and splashed me. Well, as my head was turned, my 4 yr old jumped and messed up my neck.

I know it will never happen, but I'm so afraid that my little family here will NOT want to be around me anymore, because I hurt. I try to do things, even if I really can't, because I still _want_ to be part of everything. I cry a little now and again and hope they don't see. Sometimes I am crying and no one can tell because tears won't form or fall. Guess that's another progression of the disease. Along with the fact I have to use nasal spray because ... well...


Wednesday, July 13, 2011

How I explain RA to my kids

Explaining RA or any autoimmune disease to children (or adults) is not easy. It takes a while and repeating myself and even then, there is no guarantee the people will understand. So, I drew out some stuff the other day. It took a while because using my hands is not something I can do for a period of time. I love to write and draw. I prefer the old pencil/paper method to computer because I type faster than my thoughts so most of the time I sit staring at the screen waiting for the next thought to pop into my head. Hopefully the images I am going to upload to my computer will post here decently.

This is the first picture.
The second - introducing the immune system.
This is a very basic look at what happens when a virus or bacteria enter the body. The WBC fight until the foreign antibody is dead.
This pain she is feeling (or he, just happens that autoimmune occur in more women then men), is constant unless she takes a pain killer. The stiffness every morning from 30-45 min (give or take) and the pain pays no regard to if it is cold or hot outside. When the barometric pressure increases, however, so does her pain.
This is just an minute example of what happens in her body. The WBC are attacking the tissues (in this case) between the bones in her fingers. Now, picture that happening all over her body, in all joints. Her body is begging the WBC and immune system to stop trying to attack it. Telling the system it's NOT the enemy. But it's not listening.

There is no cure for RA or any autoimmune disorder. Medication can slow down the process and make life comfortable and livable. One person can have more than one autoimmune disorder, too, and they are not only attacking the joints, but they will attack the heart, liver and other organs in the body. To these people who suffer, their immune system sees it's creator, owner, host as an enemy. And we all know, that the immune system will fight until the enemy is dead.

That last sentence, when I wrote it last night, made reality sink in for the first time in a year.

Monday, July 11, 2011

Life since increase of Cymbalta

Well, as much as I don't want to admit it, I think a lot of the pain I was feeling was from my fibromyalgia. It really sucks. I'm now on 60 mg of Cymbalta a day. I love the way it helps me with my depression, I just wish I didn't have the fibro along with it.

I do still have a lot of the hand, shoulder pain from the RA. I doubt that will ever change. At least I'm sort of managed now.

One thing that Cymbalta does that isn't good, is increase my BP. When I wasn't on Cymbalta or Savella, my BP went down considerably - back to normal limits. Now, I have to fight it again. Maybe now that I'm not in CONSTANT pain, I can start walking in the mornings, because I really need to get my body going.

Guess that's about all for this little update.