Wednesday, April 30, 2008

...and the kitchen sink

In case I hadn't had enough, they just threw in the kitchen sink. I thought I had as much as I could handle on my plate. Then, last night, I developed severe abdominal pains and ended up in the emergency room, where I was diagnosed with gallstones. So I'll most likely need to have my gallbladder removed very soon.

Schedule: This Friday morning, I will have a nuclear cholangiogram to get a better view of the gallstones. Then on Monday, I will consult with a general surgeon, and most likely schedule surgery. Surgery will need to be scheduled sometime next week, because by the following Wednesday, I need to be ready to fly to New York!!! All of this means that my students' piano recital is currently up in the air.

Issues: I hate to say this again but: "Why me?" And no, I don't want an answer. I don't actually believe that there is an answer to that question. I believe that my body is sick, so things go wrong, but no God or fate or master plan has determined that for me. If you are interested in this perspective, please consider reading When Bad Things Happen to Good People. It's a simple book that changed my view on life and the universe.

More issues: More literally...why is this happening? Risk factors for gallstones include: low fiber and high fat in diet, old(er) age, smoking, high body fat, high body weight.

With that in mind: I have been on a strict high fiber, low fat diet ever since I was diagnosed with IBS over a year ago (No IBS is not a risk factor.) I'm only 24. Not many 24 year olds deal with this. I despise cigarettes. I have a low body weight for my height, and my body fat percentage is optimal.

The only possible explanations I've been able to come up with:
One of my many medications has caused this to happen.
Damage to my spinal cord that is contributing to increasing constipation and causes low motility of the intestines could also cause low gallbladder motility, causing a buildup of collected fats and bile.

More rhetorically: why does this have to be happening right now? My life is completely full to the brim for the next few months. Now, I have to find a way to squeeze this in. If I have gallbladder surgery (cholecystectomy) next week, I will have to change the recital date and miss my friend's wedding. I don't have a lot of friends, so this is huge! This will be immediately followed by my trip to New York to see my neurosurgeons and have tests done (oh, how I love medical tests!). The recital would need to be the next week, followed by my wisdom tooth extraction the following week. I would have a couple weeks to recover (again) before my tethered cord surgery in June. AHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Why did I need something extra right now? Like I didn't have enough. Come on. I know that individually, I could handle any one of these things. But all together, it seems impossible, insurmountable, and just plain unfair.

As a side note, why do I need to wait a week and go through all of these extra steps in order to get my gallbladder removed? Why couldn't they have admitted me last night and removed my gallbladder this morning? It would have been so much easier for me...and more convenient. The doctors don't seem to care that I'm quite uncomfortable right now. Why are they making me wait so long?

I don't want to deal with all of this. It's just so much to take on. And there is so much pain ahead. But for some reason, I feel like if I can just get my schedule on order, I will be able to handle everything. I have so many people supporting me. I know that I can do this. So, I'll persist and persist...and continue to persist!!! What other option do I have?

Saturday, April 5, 2008

Bad Days

Dealing with chiari symptoms for so many years is a challenge. And sometimes it seems to catch up with me. I spend most of my time pretending I'm okay, smiling through the pain, acting like I'm not sick- or like it doesn't bother me. I'm certainly not going to spend all of my time wallowing in self-pity. So I guess it just builds up, and it has to come out sometime. I do feel like I want to give up at times. But I just cry it out, and if I'm lucky, someone is there to hold me. And the next day, I start over, keep going. Because really, there's no other choice.

It is this way for many people with invisible chronic illnesses. I know what I look like- I look perfectly healthy, at least when I'm up and around and people can see me. They don't see me when I'm laying flat on my back in the darkness, and any light, sound, or slight movement causes pain and nausea. Most people in my life don't even know that I feel this way at some time almost every single day of my life. Sometimes, I feel this way all day. I explain it away as a "migraine", because it's a bit too complicated to explain the whole thing. But I'm going to try to get better at telling what really is going on. I don't want others to pity me. But I do want them to understand at least some of what I deal with. Even if I do tell more people just how sick I am, I will still probably spend my days pretending I'm not least when I'm out of bed. Because how else can you really live your life?

Friday, April 4, 2008

Another day of symptoms

Today, I'm having a pretty severe muscle spasm deep in my neck that is causing radiating pain into my head and right shoulder and arm. Too bad my massage therapist is too scared to massage so closely to my titanium rods. (Not that I can afford a massage!)

Other than that, it's just like every other day...nausea is pretty bad, especially when I'm upright. My head pressure feels quite high. My POTS symptoms are a little better than normal, because I haven't been too out of breath today.

I have a few piano lessons to teach today. The vitamin B-12 seems to be helping a bit with my energy, so hopefully my other symptoms won't keep me from teaching.

I just have to keep pressing onward, even when it just feels endless. I know it sounds silly to say, but why can't these symptoms just go away? Leave me alone! Let me live my life! It's just so frustrating to keep going every day. I just wonder if I'll ever get any better. I'm having surgery this summer in the hopes of getting better. There's no way I would put my body through that if I didn't have hope that it would help. But I also realistically know that some people aren't helped.