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Thursday, April 28, 2011

A Difficult Patient

Yesterday I went to see Dr. Saturday. It was good news - my labs from the ER on Monday night showed a decrease in my white blood cell count. He was concerned about the abscesses coming back or something, but since the labs are improved, he thinks my stomach is on the right track. We both think that the increase last week could be due to increased inflammation from my current joint/muscle pain flare up. There is still a possibility that I will need surgery at some point to remove the last bit of J pouch. This could be in a month, could be in 5 years - but he thinks it's pretty possible that another infection or abscess could develop because of the tissue that's still there, necessitating another surgery. I told him that if this happens, I'm hoping for BEFORE my insurance runs out in July! ;) I'd really just like to move on with my life and not walk around feeling like a ticking time bomb is in my belly! ;)

He was very concerned about my increased pain. He mentioned something about me being a difficult patient... not that I'm obnoxious (well, okay, maybe a little bit), but my body is... not normal. Since Friday, my stomach has been okay! That's great! But my joint and muscle pain has been RIDICULOUSLY bad. Just unbearable. He wanted me to get in with a new rheumatologist, but of course it would be weeks and weeks before I could see them! I have an appointment with my current Rheumatologist in less than a month, so I'll just keep that appointment. I feel (and Dr. Saturday agrees) that Rheumy has been less than helpful so far - when I have problems, she just says that I'm already on "optimal medical therapy" and asks if I'm depressed and if I've talked to a psychologist. If the psychologist could reduce my joint inflammation, I'd be happy to talk to them! ;) Not. Helpful.

I've been on a medicine for over a year now that's supposed to reduce inflammation and autoimmune activity. It takes 4-6 months to kick in, so all summer when I was hurting, we hoped I needed to just wait longer for it to work. It definitely should have kicked in by now... and I'm still having flare ups and lots of pain. At my last appointment, I asked her if I could come off it, since I don't think it's working. She told me, "I'm sure it's helping more than you think, and it's not giving you side effects, so you might as well stay on it." I don't know if I should just stay on a med that isn't helping just because it is safe... I know I am a difficult patient. Due to my other problems, allergies, previous therapies, and elevated white count, she is very limited as far as treatment options. I don't know what I expect her to do, but I wish she could do something besides suggest that I'm just depressed.

My pain has still been really, really bad. Today has been better... I pulled out a leftover pain patch, which I'm probably not supposed to do, but it is helping tremendously and I haven't needed any pain pills at all on top of the patch. Plus, God allowed me to SLEEP last night. Please pray that God will give me relief from the pain! And thank Him that my white count has come DOWN! Woo hoo! That is such good news! I also got a massage today! It felt goooood. If I were rich and famous, I'd get one every week!

At the hospital, I got to see my friend Patt, who is one week out from yet another surgery for her Crohn's disease. Her recovery is going very, very slowly, and she fell on Tuesday, so she is very sore. She has been in the hospital for weeks and weeks at this point, and that is TOUGH! Please pray for encouragement for Patt's soul and for healing of her body!

Hannah ;)

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