Saturday, May 1, 2010

Hanging In There...

Things are still rough from the pain perspective. I met with the Pain Dr on Thursday, and we decided to come off the pain patch this weekend. I just don't think it's helping me much, they are expensive, and I feel very drugged (but still in a lot of pain) the first day on it, which I don't enjoy. So we're going to just do pills and add a sleep aid. My thought is that my ability to deal with the pain during the day will be better if I can sleep through the pain for the night and get a reasonable amount of rest. Unfortunately, Thursday afternoon and on was pretty horrendous - worse than either time I went to the ER the other week. Things have been a little better since Friday, but still not good. I'm trying the sleep medicine, and it's helping, but I think it's making me groggy throughout the day. But for now, at least, it's totally worth it to be able to get a break and sleep! I'm off the patch as of today, and I'm still really hurting, but it's not really any worse without the patch, so I think it was a good choice to come off it.

Dr. Pain has some very interesting theories about how all my symptoms fit together and exacerbate each other. It's a little complicated, but it makes sense to me. Basically, he told me that the adrenal insufficiency has made it so my body can't regulate my autonomic nervous system. The ANS controls heart rate, digestion, breathing, temperature regulation, etc. - all the subconscious stuff. When I've had severe pain or stress or fatigue, my ANS goes nuts, causing my high heart rate, sweating, fevers, stomach "dumping," shaking, etc. Additionally, the episodes actually worsen perception of pain because my nerves are going nuts... so I'm caught in a vicious cycle. The inflammation in my body and the arthritis causes pain, which can set off my nervous system, which causes my weird episodes, which causes more pain. I'm supposed to try to identify what exactly is triggering the episodes. He wants to figure out what specific labs are out-of-whack before the episodes so we can try to correct them. Hopefully we can prevent or at least anticipate when things are getting out of control. At the very least, what he said helps me understand a little better what's going on in my body!

Dr Pain and I are both pretty frustrated that nothing is really helping me feel better. We know that the bottom line is that I need something to decrease the inflammation that's causing the GI issues, fevers, joint pain, etc. The stuff I'm on now can mask the pain to some extent, but that's it. I bet that a couple Advil would do more for my pain than all the narcotics in the world, because it would treat the inflammation. The bummer is that pretty much all of the traditional things used to reduce inflammation aren't options for me for varying and complicated reasons, so my choices are limited. The other bummer is that the options I do have can take months to kick in. I'm hoping to start something new this week... so I just have to hang in there until it kicks in. Getting the adrenal/ANS stuff sorted out will be a long-term thing, but it is supposed to be easier to manage once my body is less sick and stressed from inflammation.

Twitchy is doing okay. Not as good as he was a few weeks ago, but still a lot better than he was back in March, yay! I'm dumping a lot (I know I keep using that term - it's really what it's called! Basically, when I'm dumping, anything I swallow just goes right through me and my body doesn't absorb it, which is quite problematic for my weight, hydration, blood sugar, and taking pills), but overall I'm having less tummy aches and nausea, so I'll take it!

I just have a bit more school left... a final on Monday, some make-up quizzes on Tuesday, and another final on Friday. Then I'm done. Just one more week. I just hope I can do it. I'll still have to finish up my physics class in the fall, but that's okay. I'm kinda bummed and feel like a loser to STILL not be graduating, but God is in control of all that! I haven't been able to study at all since Wednesday because I've been feeling really terrible. So I'm gonna go attempt to now...

Please thank God that the sleeping stuff is working! That's a really big deal. I'd also really appreciate prayers for encouragement and a break from the pain. It's very disheartening when there is really nothing they can do to make you feel better. Even my ER runs really only helped for a few hours. Once again, it's a good reminder that my trust and hope doesn't rest in any medicine or doctor, but in God alone. He is the one in control here, and so I know that He is working for His glory.

Hannah ;)

1 comment:

  1. Hannah,

    I'm glad the doc was able to give you some insight for what's going on with your body. Although, they still don't have a fix, hopefully this eases some anxiety/fears. I know I freak out when I'm feeling weird and don't know what's going on!

    I wish you weren't struggling right now and would have given up my no-complication procedures in a heartbeat if it would have made things easier on you. I will be praying that you can get some sleep at night so hopefully that'll help you get through the days a little easier.

    One more week and you can focus a little more on you and not worry so much about school for now. I'm sorry graduation is out of the question but like I said before, everything happens for a reason and I'm sure you'll get an answer for this down the road.

    Love you and sending you positive vibes!