I've been trying to write out this post for a few days now without sounding like a total downer and I'm having a hard time. Things aren't good, and I don't like always having to talk about how things aren't good. I'm exhausted enough living it.
When I was struggling before my diagnosis, after my diagnosis, and after I was told what surgeries would be best for me, I took to the internet to try and find other personal stories. There was very little out there, and I clung to anything I could find. There was only so much solace I could take in the percentages my doctor gave me; I wanted to hear real stories told by real people.
And that's why I keep blogging. I may only hold the tiniest corner of the blogosphere, but if someone out there is asking the same questions that I asked then I hope they can find me, and I hope my stories will be helpful to them.That's why I keep writing about my health. It'd be a lot more pleasant to pretend everything was wonderful and that I had a functional body, but that's just not the case.
The good news, and the only good news, is that my ability to swallow has continued to progress and I am hardly refluxing anymore. I can eat almost all soft foods along with rice, crackers, chips, and even small pieces of meat. I've come a long way with chicken. I'm still struggling with cold liquids, anything leafy, skins, and other small and hard objects. Oh, and my bowel medication has been working. I still don't feel as good as I would if my lower GI system worked, but the improvement has been more than I could ask for (even if it's expensive as hell.)
As for the bad news, my digestion still hasn't improved, and the gagging up mucous issue has only gotten worse. I caught a cold last week which has made things much worse, and let me just say that gagging up a handful of mucous in front of all the other moms at dance class is an experience I'd not like to recreate. I was able to get an appointment and talk to my my doctor about these issues, but he said I need to give my body at least 9 months to heal and reach a new baseline. Only after that can we re-evaluate. This was pretty disheartening to hear, but at the same time I'm almost at the end of my options. The only other treatment we could consider is a partial gastrectomy (removal of the stomach) and if it comes down to that I'm going to have a lot more thinking to do.
On top of my GI issues, my insurance company has decided to charge us $850 a month for my anti-depressant. Obviously we can't come anywhere close to affording that, and the generic version of this drug is well known for causing issues- and I refuse to take generic psychiatric medication anyway. The only option I have is to wean off of it, and seeing as how I'm already struggling immensely with depression right now, this is going to be a big hit to my health. This was an end of the road medication for me, and right now there aren't any other drugs or classes of drugs that would be right for me to try. I know I should get into my psychiatrist to talk about this, but it's another $150 we can't afford to spend right now.
With all these bills I've had to stop physical therapy, and my headaches have been out of control. They can become completely debilitating, and on top of all the other horrible sensations my body is producing, I just can't deal with them. My last round of Botox seems to have helped a little, and if money permitted I'd have it done again. Of course, money does not permit. The other night I spent an hour in the bathroom just banging my head against a wall, trying to relax my skull muscles. It was very painful, but actually helped a little bit.
But the icing on top of this shit cake is a nice little side effect of my bowel issues that has caused me to see a colorectal doctor, and schedule a fun procedure I won't tell you about because well, you really don't want to know.
When it rains it pours, and I'm ready for the sun.