Today (and yesterday) has just been one of those bad days that make me want to scream Why Me at the top of my lungs. Not that I would wish being in constant pain on anyone else, but why does there have to be so much pain and suffering in the world anyways. I know that it is not in my hands and I just need to trust the One who knows all, but why do kids have to get horrible diseases? Why did so many people lose their homes and families in Haiti? I know that compared to what so many people deal with my life is a piece of cake, but that doesn't make days like today any more bearable. I have had a few people ask me what exactly is wrong with me without knowing what a loaded question that is. I decided to blog about it because a) I thought writing it out might make me feel just a little bit better tonight, b) I started writing this at 4:00 in the morning because I hurt to much to sleep and needed something to fill the time, and c) this way you have to option of if you want to read it or not!
The biggest issue right now is horrible stomach pain on my right side, under my ribcage. How bad it is changes day to day, but on it's worst days I can't keep anything down and end up in the ER needing to get IV fluids and pain/naseau meds since I can't even keep any of them down. Sometimes I have to stay for a night (or 7) before we can get things under control again. There really is no certain diagnosis, but the doctors think it is a condition called Spincter of Oddi dysfunction. I have had 3 surgeries that helped for about a week each but then things went right back to how they were. Best guess as to why the surgeries don't work like they should is due to problem number 2; Ehlers Danlos Syndrome.
EDS is a connective tissue disorder that, for me at least, just means that I can sprain something if I even think about moving the wrong way. It also means that my muscles, ligaments, and tendons are too streched out to support my joints like they should. After 3 years of intensive physical therapy that did nothing to help me out I gave up. In addition to problems with my connective tissues I have joint pain from fibromyalgia and arthritis in my hips.
Thankfully a few of the things that have caused me tons of problems in the past have either resolved or are much better. I used to get horrible coughing attacks , brought on by playing sports or any kind of upper respiratory illness, where I would literally cough for 24-48 hours straight. I could not stop long enough to do more than take a quick breath and maybe a sip of water. Not long enough to relax at all, let alone get any sleep. Finally after years of dealing with it, we found a treatment that worked. The last of the major ones (have I bored you to death yet?) is Polycystic Ovarian Syndrome. When I got the pain from my first cyst at 13, we were sure that it had to be my appendix. After a series of traumatic tests and procedures (I hadn't ever seen a gynecologist before) the childrens hospital told us that they couldn't treat me and had to transfer me to another hospital for surgery. For the next 9 years I got cysts once or twice a year until I convinced a doctor to remove the offending ovary since I had never had a cyst on the left one.
Well it seems like maybe this actually helped a little, that or the pain meds are finally doing their job, and I think I might be able to get a little bit of sleep. In a few short hours my wonderful husband and I are on our way to Madison, WI to see one more performance of Rent the Broadway Tour!