Or at least, that’s what this week has felt like.
I had three appointments this week: one with my GI for new symptoms, one with a rheumatologist for a collection of new symptoms I mentioned in a previous post, and one with the headache center because my headaches are getting worse and I’m willing to try a preventative again. All three appointments concluded in ways that I have to admit I’m far from thrilled with.
My new GI symptoms were lower GI bleeding and increased GI pain. Now, I’ve been diagnosed with IBS, so I’m used to a certain level of GI pain, but it’s usually because of spasms and I have medication to treat that. This pain doesn’t respond to those pills, and GI bleeding is always a concerning symptom. There are two basic possibilities when you’re dealing with lower GI bleeding: hemmorrhoids and inflammatory disorders. While hemmorhoids are a vile thing to consider, they would definitely be the lesser evil here. One or two treatments could get rid of them, and while there’s a chance of recurrence, it’s not a huge lifetime thing. Inflammatory disorders are a whole other boat. Both Inflammatory Bowel Disorder and Crohn’s Syndrome are auto-immune issues, which means that your own immune system is attacking your GI. We’re talking medication probably for life and the possibility of major surgeries to remove parts of the GI system that get too badly damaged. Not pretty. Both are currently on the table, and will remain that way until I get a sigmoidoscopy done next month. I’m sure you can imagine, with GI pain, how much I want to have a camera shoved up my derriere. Especially since the last time, I ended up in the ER a few days later with one of the few episodes 10 out of 10 pain I’ve ever had. Ugh.
The rheumatologist appointment wasn’t a whole lot better. I’ve seen this rheumatologist before; in the summer of 2008, he was the first doctor who suggested I had Ehlers-Danlos Syndrome. He struck me as a kind man and a good diagnostician, so when I needed to see a rheumatologist, I asked for him by name. We talked about symptoms, and he could see the swelling in my wrists even if he couldn’t see it in my fingers (because I have exceptionally slender fingers, they look about normal when swollen). I didn’t like his answers, either. He said that there were a couple of possibilities that sprang to mind. Because of the GI symptoms under investigation, he said that I could have Inflammatory Bowel Disorder or Crohn’s, which can cause generalized arthritis-like inflammation. I could also have a sero-negative rheumatological disorder like rheumatoid arthritis or Sjogren’s; the main confirmation for either of those would be a negative diagnosis for bowel issues and a positive reaction to medications that treat them. In any case, he suspects something I’ll be dealing with for the rest of my life. Joy.
And finally, on to the headache specialist. I stopped seeing them a year ago because I tried two different preventative medications and reacted badly to both – sleeping 16-18 hours a day, having trouble doing simple things like feeding myself because I’d get sidetracked somewhere in the process (usually after putting food into the microwave). Thing is, the headaches have gotten worse again. I’m now having positional headaches, which scares the crap out of me because I know that can be a sign of Chiari, which is way more common in EDSers than in the general population. It can also be a sign that the cervical settling I was diagnosed with a bit over 2 years ago is causing problems. Well, the headache specialist threw in a new possibility – he said I could have pockets of cerebro-spinal fluid developing in my brain, which apparently is also more common with EDSers than the general population. Aw fuck. If that’s the case, they have to go in and patch them because they can cause brain damage if left unchecked. Gah. Because of this possibility, I have to have a MRI done, with and without contrast. That’s pretty much torture to me. I’m mildly claustrophobic, and having my head bound in place and then being slid into a tube that barely has enough room to fit me is pretty horrific. Worse yet, to do a with-and-without contrast, they have to do one set of scans, bring you back out so they can inject you with contrast, and then put you back in. It is one thing to deal with being put in once; something about being pulled out and put back in heightens the sensation of being trapped enormously for me. And of course, for an MRI, you have to stay perfectly still.
They also are having a little trouble with preventatives because of my other conditions. Migraine preventatives tend to be drugs that were originally intended for other uses that were discovered to have headache-preventing qualities. They fall into 3 major groups: anti-depressants, anti-seizure meds, and blood pressure meds. They don’t want to give me an anti-depressant because I’m bipolar. I’ve reacted badly to 3 anti-seizure meds, so we don’t want to try that route again – no sense beating a dead horse. Which leaves blood pressure meds…which have the potential of making my POTS worse. I guess that’s less scary than messing with things that can affect bipolarism because I have a better chance of catching POTS symptoms before something bad happens, not to mention that the gap between theraputic for headaches and theraputic for the original use is wider for blood pressure meds. That is to say, the level of anti-depressants needed to prevent migraines is closer to the level needed to treat depression than the level of blood pressure meds to prevent migraines is to the level needed to treat high blood pressure. The really bad news is that they think the main medication I’m on to manage my generalized body pain may be making my headaches worse. They want me to think about coming off of it. The idea of coming off of the medication that makes the pain that encompasses my whole body tolerable is enough to make me want to scream. I have to sit here and try to figure out which is worse: the possibility that my headaches will continue to get worse, or what it will feel like to come off the medication. Pain is a funny thing; being on opioids is known to make pain worse in some people, so it might not be as bad as I think. Except I remember what it was like before I got on the opioid medication. I spent all of my time either at school, doing homework, or asleep, because being awake was too damn painful. I don’t want to go back to that – it’s a frightening possibility.
Which is to say, this week was full of catostrophic SUCK. I got answers I didn’t want at every turn. It sucks up your energy, dealing with stuff like this, as if I didn’t have all kinds of other things eating up my energy. I’m exhausted and sad and frustrated and angry, and feeling very vulnerable right now. I feel like I am walking on thin ice, and anything could send me plummeting into the deadly cold water beneath.
In some different news, I am not the only person who has been dealing with sucky stuff lately. A friend of a friend has had a crisis happen where she cannot get the treatment she needs to be as healthy and well as she can be. My friend, Sharon of aftergadget.wordpress.com, organized an auction to help out. There are a variety of things included in the auction, from artwork to services. Please check the auction out at http://heathersauction.blogspot.com/!