I don’t think I can hold it in any longer. Sorry, this is not going to be a super warm and fuzzy post.
I just binged on a bunch of chocolate chips. I’ve gone nearly 4 weeks on a strict paleo diet. Tonight is not going well. I don’t much care. That is the problem. Okay, I do, but I’m feeling kind of hopeless.
I have been miserable this week. Worse than any other time.
My stomach is not cooperating at all and I am feeling really really down about it. It is driving me crazy. I feel like it is all I can think about unless I am sleeping or doing something specific. Now, keep in mind I do not feel sorry for myself. I just feel physically miserable which is just not easy.
Mentally I am beyond burnt out.
So, I’ll back up. But before I do that I want to say I have loads of photos that I will post soon. I have been swamped with work. Work wise I quit one job to take on a half dozen. Why? Because my stomach is going to break our bank and I don’t have a choice right now.
Okay, backing up. Remember this “textbook hypothyroidism”? Yep. Me too. However, the few tests done so far have all be negative. Or I should say within the normal range. Actually my TSH was a tad high. Because of that Dr. Foley is not focusing on that right now. However, I went up to Joe’s work and am testing for basically what is known as the autoimmune hypothyroidism. I’m not thinking that will be positive but it is the final thing to completely rule it out.
Last Thursday Dr. Foley let me know that after lit review and looking at my case more he suspects (or suspected, which I’ll get to) intestinal damage due to past use of Accutane. I was on that twice around 2000. AND, go ahead and look it up. There’s lots of GI related problems with that having been used. This felt a bit like getting Calvin’s diagnosis. I had a hard time. Okay, I’m still having a hard time.
He prescribed me Domeperidone to help with stomach contractions and such. It did nothing. It works by blocking dopamine, which wasn’t thrilling me.
This weekend I hit another low. I am feeling ready to fully admit depression there. I am having these cycles of it. No energy, low patience/irritability, very tired, sad. I wasn’t sure if it was the thought of intestinal damage, the dopamine blocker, or what. So, I let Dr. Foley know.
When he let me know about the Accutane last week he also mentioned possible concern of CNS (central nervous system) inflamation and infection. Specifically looking at Lyme disease.
So, after letting him know about my mood and feeling worse he wants to aggressively pursue Lyme.
Next week I have a colonoscopy (aren’t I so lucky?). This will help just knowing it isn’t a tumor or to know what if any intestinal damage has been done. The GI specialist would also like to do an upper GI scope.
I feel like…well, I don’t know. And, I don’t think it matters. Intellectually I just want answers and solutions. Physically as well. I feel like a dead and bloated cow right now. Worse than I have. I said that didn’t I? Also, my memory is getting worse.
Sigh. I have to wait another week or so now to find out about the thyroid and the colonoscopy. I told Foley I want to wait until I see him again (on the 18th) before deciding to do either a culture to test for Lyme (most reliable, costs a grand, not covered by insurance) or treat for 3 weeks then test.
Lyme is a tricky bastard. Yes, I will not be nice about it. And, though I cannot imagine I have it, I feel like it has just got to be something tricky like that. Often when things like this don’t get better or they get worse, good doctors will look in to Lyme.
Okay, I burst it all out and I feel a bit better, but not physically. I want to eat more than one solid meal a day and feel okay. It is getting to the point that I cannot even do that 🙁
I’m okay. Really I am. I don’t want to be dramatic. But, these are facts. And honesty, one of the hardest parts is all this waiting to get answers. It’s been over 1.5 years of this misery.
I’ll keep updating when and if I know things. I really appreciate the people who have been patient and listen to me. Also to those who brainstorm with me. Being home is not easy (I need to socialize) but I am also so glad because I’m not sure I am in the place to go to work right now. Sometimes I wonder though. I feel like a failure right now. I do not feel like I have any control over my body. That is hard. The thing I realize is that it has set me up for some positive things though. I can feed my family healthier food as I learn about things. I can now empathize with people who are ill or having a hard time paying bills due to medical bills. Empathy is a valuable “tool” . So, despite things I do still look for the positives and recognize them for what they are. I learned with Calvin’s arrival in my life that no matter how things look right now, I will likely see them differently in the future.
