Around 5pm last night I was walking into the kitchen and I almost fell on the floor. I got this intense pain in my bladder, the raw feeling was worse and it felt like it was being riped out of me. I took my pain reliever right then but it won't take away my pain. While laying in bed crying silently I was considering going to the hospital for pain relief. But if I did that I would have to tell my husband how bad the pain was (he had no idea) and then have to pay that bill. I didn't want to do either of those things. I just did the best I could. I am still in intense pain, I have to take very small steps and walk as softly as I can. If my bladder gets jarred around it sends major pain waves.
I have been trying to figure out what I did different and can't. My diet is being followed strictly, I take my medications on time without fail. I just can't figure this disease out.
Sometimes it helps me to write this down, I hate to burned my husband with it. And it is hard to keep the feelings locked up inside. I need to let them out and hope that someday there will be someone who knows how I feel.
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Hello,
ReplyDeleteAs tempting as it might be to hide your pain from your husband, it's important for him to know where you're really at. I understand your fear of going to the ER and you can certainly sit down with your husband and try to establish a "criteria", so to speak, for how to make the call for going to the ER. (That's a talk my husband and I have had for each of the illnesses that reach the point where the ER could be an appropriate option but I try to avoid the ER at all costs).
I also understand all about medical bill stress. Having gone through a medical bankruptcy and nearly losing our house not once, not twice, but three times over medical bills... I really, really get it.
The degree of pain you're describing is so severe. Have you seen a pain management specialist?
It's great that you've made changes to your diet to avoid IC trigger foods/drinks. It's also great that you take your medications as prescribed. Since one of the meds you've mentioned is Elmiron and since you may not have yet been taking it long enough for it to really be doing its thing, you may get more relief in time.
It is GREAT that you are writing things down rather than bottling things up. It's therapeutic, it gets you connected with fellow patients, this gives you access to support... It's a great outlet and resource all in one.
There are other people who know how you feel. I have lived with IC since 1992. I am doing much better now than I was a few years back (IC-wise anyway). Since my official diagnosis after four cystoscopies occurred in 2003, I have improved greatly with IC symptoms.
While everyone's situation is different, I think it's vital to learn as much as you can, network with fellow patients, try to give the Elmiron you were prescribed a chance to work, and try to employ coping skills for managing the stress.
A big one for me is music. Coping skills are very important and don't need to cost any money at all. It may seem overly simplistic but music can help your mood, calm those stress hormones down, ease muscle tension (which stands to reduce pain levels), etc.
Hang in there! There are many thoughtful people online who care and who "get it".
Take care,
Jeanne