So, I guess switching my meds (from injection methotrexate to pill form) means I traded severe nausea, for mild nausea and constant stomach cramps? Hair loss, weight gain, blah blah...the side effects keep adding up...the folic acid is supposed to help with the side effects of methotrexate, but it's only been a few days since I finally got my hands on some, so I probably need to give it more time. Is this better than my skin and bones being on fire 24/7? Yes. But not my favorite trade off as it still steals my time and energy and ability to live my life. Some people want me off it completely, as the side effects can be much more dangerous than this. But I felt what one day of having that feeling in my skin (just my skin, not even the bone pain) again was like, and I can't choose that, I can't. I feel trapped, and I don't even know what other options are because I STILL DONT KNOW WHATS WRONG WITH ME. And my doctor doesn't care to find out. All that matters to him is the methotrexate worked, the end. What am I supposed to do? I'm having trouble taking care of myself, especially my long hair. I made plans to cut it to a more manageable length, but I have an anxiety attack every time I really think about it or it gets closer to really happening. If the hair loss is becoming an issue now too, how could I cut off the hair I'm desperate to keep? Why lose more than I have to? Every decision, either with my meds or my stupid hair, every decision feels wrong. I keep running from option to option, hating what I see behind every door, and it's making me panic. And the more I panic, the worse my decision making becomes. So I do nothing. I just sit in this stew of anxiety and depression that breeds from this trapped and hopeless feeling. I don't have enough information to know what decision to make. I don't have the confidence to make a decision anyway. I don't know how to talk to people about it because they act like one option or another makes perfect sense because THEY don't have to live with the consequences, and they don't feel what I feel. So how do I talk to my doctors, friends, family? I guess I don't, I write in stupid blogs that nobody reads instead. Damnit. I just hate that I'm going through all this frustration over a condition I can't even name, ON TOP OF ONE IM ALREADY TRYING TO MANAGE. Wasn't EDS enough???? Can't I find answers? It's obviously autoimmune, but they can't find inflammation on the scans. Anti-inflammatories work, but why? IT MAKES NO SENSE.
And for the love of God, it's not in my head. At least that's one thing the doctors haven't insinuated.
Yet.
