Well, here we are 2 months post-op. It’s hard to believe I made it this far. Medical stuff has become a little much and I feel overwhelmed by a lot of it. A little history: my hysterectomy and ovary removal was June 1st, 2017. About 12 days after that, I started on ERT, Premarin 0.325mg. Mid-July I called my GYN to see if we could adjust my dose. I was experiencing extreme fatigue, mood changes, and dryness. I also talked with my PCP and we upped my Lexapro to see if that would help with my mood somewhat. So, my Premarin was bumped up to 0.45mg and my Lexapro to 15mg. I’m starting to feel like myself again….
While I may be feeling more like myself, my head isn’t with me. I’ve been dealing with some minor hydrocephalus issues—I’m currently trying to determine if my shunt is the problem or if it’s something else. At the beginning of July I had to go down to Detroit Children’s Hospital of Michigan and had my shunt re-programmed to a higher setting, so it’s not draining as much fluid. Towards the end of July, I also decided to cut my Diamox from 500mg BID to 250mg BID.
I’m still having issues with my head. I don’t know what’s going on, or if I should worry about it. I just don’t know. I feel like if I go to my neurologist with my symptoms, she will send me down to my neurosurgeon who will do a CT, X-rays, and labs. Even then, I could only hope for a tap that would show something.
Recently, I told my dad that I am done trying to figure out all my medical stuff. Usually I do research and visit the docs with ideas of what’s wrong, but I don’t know anymore. I kind of feel like I’m going insane. I know I already go above and beyond when it comes to helping the docs figure out what’s going on (my lists have lists of everything wrong). I need to remember to step back and take a breath, to relax, to allow myself not to be over-prepared.
As my 28th birthday approaches, I really need to learn to relax and live this life more fully. I want to get out there and prove to the world that my conditions do not limit or define me. I am a strong and independent woman who has challenges and some limitations, but they are not me—they do not define me. I will continue to get through this and hopefully, get back to doing all the things I love.
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