I had such a nice Thanksgiving with my family. Wednesday night I ended up in the ER and not sure if I would be admitted or not. I had my appointment with my rheumatologist and she didn't know why I was having so much pain. My legs felt like they were on fire and I was having sharp pains as well. I was really weak and short of breath. I thought I was relapsing which really scared me. So she sent me to the ER to get blood work done and check my CK Cell level. A normal persons CK Cell level is 100-240, and mine were at 3900 when I was admitted into ICU. I thank God that my CK Cell level was 196 on Wednesday! I'm normal again. So thankfully I was released and got to go home. And now I feel even more in the dark with this disease. Is it normal to have burning sensation? How often and how long does it last? I've been really down lately because I don't know what to expect anymore and I don't know how I will feel tomorrow.
I joined The Myositis Association and found a support group. They are meeting next weekend in LA. I'm really excited to go and maybe I'll get some answers. It's so hard to explain what I have when I'm not even sure what the recovery will be and how it will effect my daily life. So I'm really hoping for some insight on this disease next Saturday. My mom is going to go with me and I think it will help her too.
I had a good day yesterday but I think I over did it. Family and close friends came by after dinner to see me and mingle. I'm hurting today, but it was worth it to see faces that I love. My body is really tired. It's crazy that it takes a day to recover from an evening. I get so ansy when I lay around, but my body unfortunately can't handle the energy in my head. I really need to learn breathing techniques or some sort of meditation to help calm my head and help my body heal.
Did the ER give you anything for the pain? I've actually never gone to the ER for pain, although it's been bad enough that I've cried for days on end (I think because I've been a nurse for so long, we don't like doctors and don't make very good patients lol).
ReplyDeleteI actually have the best luck with Ultram for the pain. I've had vicodin, too - but that just makes me feel drugged. The Ultram just takes enough edge off that I can sort of function.
I've learned hot showers can really help. I also have a hot tub that is amazing (yes, my husband loves me very, very much - he bought a hot tub just for me and my pain). When I'm too weak to get in the hot tub or shower, I like to use my electric blanket on high (like a gigantic heating pad). Something about the heat kind of relaxes my muscles a little bit. Another thing that is helpful, if you can find someone to do it, is a foot rub. My daughters will rub my feet...doesn't really do much for my muscles, but it makes me feel relaxed for just a little bit.
They gave me morphine for the pain. I haven't tried heat so maybe I will do that. My parents have a hot tub but it scares me. I will have to get an electric blanket! Thanks for the feedback :)
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