The chiari walk yesterday was a total success. I will post when the final tally of donations is calculated, but we were approaching 6 figures last time I checked!!! It was awesome. I was surrounded by members of my family (including Gus), and was reunited with people from the chiari support meetings. It was great. The coolest thing: there were a bunch of regular people there, and all of them knew about chiari! I think this is a really positive step for chiari awareness and research.
We also found out yesterday that Illinois can finally be included in the list of states that have declared September as Chiari awareness month.
The downside:
The walk was held in the morning. I had to wake up at 7:00. I was able to do it, painfully. I even actually walked for about one mile, once my pills had kicked in. It was very hard, but I did it. Unfortunately, I've been very sick ever since then. Yesterday afternoon, I developed severe pain around my belly button. It felt exactly like the night I was in the e.r. for gallstones. So, we were pretty sure we'd be heading back to the emergency room. Luckily, after writhing in pain for about 90 minutes, the pain eased off. Today, I only have some soreness in the area of my gallbladder. I have no idea what it was about. At first, we thought appendix, since they said the pain from gallstones is hard to tell from appendix pain. But, it eventually lessened, so it really couldn't have been my appendix. I know it wasn't indigestion. I know all about indigestion. I can only guess that it is somehow related to my missing gallbladder, since the pain was so similar. And it was especially odd, because it came on suddenly, and was very severe pain (about a 9). It's the kind of pain that makes you just moan out loud, cause you can't help it.
Anyway, that episode ended, but I didn't get any rest yesterday. I slept fine last night, but have felt terrible all day today. I'm going to have to miss the family gathering tonight, because I'm stuck in bed, and still need to do laundry, cooking for the week, and groceries. Ugh. My symptoms today are pretty severe. I woke with a migraine. Luckily, the Relpax was able to help, but it did make me extra dizzy, too. My joints and muscles are so sore and achy. I can barely move without moaning. My knees hurt, my hips hurt, my ribs hurt, my jaw hurts, my face hurts, my eyes hurt, and my shoulders hurt. My muscles all ache. And I've still got a bad headache, even though the migraine is gone. I still have a sore throat holding on. I've had DayQuil and Advil. Other than that, I don't know what else to do. It even hurts when I take a deep breath. So, I'll stay in bed for now. I'm so tired. I guess it's pretty normal to feel this way.
That's the pretty bad thing...it seems like the more moving I do, the more I hurt the next day. That makes it really hard to exercise...when it actually makes you feel worse...not just for a short time. I can only assume that the body pains I have are related to the Ehlers-Danlos Syndrome (that's the collagen defect that causes my ligaments to be lax). When your joints are loose, they slide around. That causes the pain...I guess.
It's just so hard to have so many diagnoses, to feel so awful, and to still not really know why I feel the way I do so much of the time. After all these years of surgeries and treatments and doctors and meds, there's still so much wrong with me. I sometimes wonder if I have fibromyalgia, too, since it is known to cause widespread pain. It has been found that exercise decreases pain threshold in people with fibromyalgia, when it should increase it. Fibro is usually a comorbid disease, meaning it occurs with another condition.
I'm considering seeking out a new pain doctor, since the pain impedes so much of my life. There are tons of medications out there. I can't have tried all of them already! And I'm not ready to give up on living.
