Confessions – 2008 (3) – Not so positive today

Today is Sunday, October 19, 2008.  I have heard from a few of my fellow bloggers that they wanted to hear more about what is really going on with me.  They say I seem so positive about everything, and they want to know about my bad days.  Well, here ya go…today is a bad day, I am in a lot of pain and angry AGAIN!!! My husband is starting to lose faith in God because I don’t seem to be getting better.   I feel alone…my Mom and sisters are so very busy with their lives and I don’t see them much,  I miss them terribly! 

I am always trying to hide my true feelings and make everyone think I am doing good, keep a smile on my face, eventhough I am in constant pain.   I know I need to keep a positive attitude and help others do the same, but it is so HARD!!!!  I do believe that God will guide me and that tomorrow will be a better day, but TODAY SUCKS!!!!

I finally got my wound vac off on the 6th of this month and my wounds are definitely starting to close up.  I have been to the doctor and they said the wounds look great.  I still cannot drive until after my next appointment on November 11th, but I am off of that machine at least.  The nurses are only coming out once a week now to check on the wounds, and my wonderful, loving husband is changing the dressings for me daily.

For the past 4 days, I have been in so much pain.  I still am not able to take my RA meds. until January, so my stiffness, swelling and pain gets worse everyday.  I cannot walk very well, I cannot sit for longer than 30 minutes, I cannot stand for longer than a few minutes, and riding in a car KILLS me.  I don’t know how much more I can take.  It is a long time until January.

My pain is not just achy anymore, it is PAIN.  I mean PAIN in EVERY joint, every finger, every toe, hips, ankles, wrists, shoulders, knees, EVERYTHING!!!!!  I don’t remember EVER hurting like this before.  I will call my doctor tomorrow and see if there is ANYTHING at all she can do for me.  I’m sure the only thing will be to put me on steriods, which don’t work that well, but I guess I have no choice.

I was talking to a friend yesterday; her mother has chronic pain as well, and she said her doctor told her that when you have pain this bad, you never go back to a little pain, the pain only gets worse.  In other words, I am building a very HIGH tolerance for pain.  I will never have just a little pain anymore, I cannot feel a little pain, all I feel is a LOT OF PAIN!!!  Does this make sense?

Well, like I said, I’m sure by tomorrow, my attitude will be better, even if I’m in more pain, but today, it all just piled up on me and I had to get it out.

The following is a comment that one of my friends emailed me about my blog:

It took me months from lots of sources to gain the knowledge that you now have at one convenient place. You also have your personal experiences, which is something I wasn’t able to find anywhere except snippets on bulletin boards and one book I bought. I’d like to see more personal experiences. I want to know how individuals with RA were diagnosed, what their medical history was, how they cope, where the pain is and how it feels to them, what their disease progression is, how their lives have changed (for better and for worse), etc. The RA websites and books don’t talk about these things much since they vary from person to person so much, and when I see a story in a magazine or something, it’s always a success story. I realize it’s important to stay positive, but I cope better if I have an idea of what to expect and I bet there’s lots of others who are like me. When I wake up with my body burning from neck to toe and have to lie in bed for twenty minutes before I can even stretch, I’d feel better if I could think, “So and so on Kim’s site talked about feeling this way,” and I wouldn’t feel so alone.