Fair warning, this is going to be a real ranty post. It’s just been one of those days!
I had an appointment today with my neurologist, and I’m just more frustrated than I can even explain right now. I don’t remember the last time I’ve been there and not left in tears. Probably because there hasn’t really been one..
Today was another pretty awful experience. Not only did the doctor make me feel like he was chastising me for contacting the clinic to ask questions, or for bringing up my “many symptoms” when I see him, but when I brought up the idea of changing meds, he tried to just shut me down before even discussing it. We talked about this the last time I saw him and the same thing happened. Now 6 months later, and I’ve continues feeling really unwell, just so run down all of the time, so I was determined to bring it up again.
The conversation didn’t really start well, but thankfully I had my father there with me today for support, and I’m glad I did because he was able to push the matter a bit more when the doctor tried to just dismiss my concerns. We talked for a while and went back and forth and it basically ended with him saying that it’s my decision, though he warned me it could be a risk going off of it in the time I would need to start something else. In the end he sent me to speak with the clinic’s nurse about my options. Now this is where it gets even more confusing. When speaking with her, it came out that I should be stopping the meds I’m on right now anyways, at least for a while, because my lymphocyte count is way too low. Now my last blood test was almost two months ago, and this is where she is getting the latest numbers, so my question is…why hasn’t anyone seen my results in that time? Shouldn’t someone have told me? And why is it that when I asked the doctor about changing drugs, did he not notice that he should be telling me that I needed to stop taking it. He even discouraged me from the idea of stopping for the amount of time I would need to in order to start another medication..but.. Now I have to stop anyways… WHAT! This has all left me with little faith that anyone in the medical world is looking out for me at this point. I kind of feel like I would be better off monitoring my results myself.
Now I’m sitting at the blood lab, waiting to have another blood test, which I now have to do every two weeks until my levels even out, and then I can decide which drug to take. It sort of feels like I’m on my own to figure out what the best way to go from here is…
Anyways, I really needed to get all that off of my chest. But now that I’ve calmed down a bit, I’m trying to shake it off, and am planning to just try to keep things moving, and possibly look into switching to another hospital to get away from the negativity I’ve encountered at this one.
And now I’m going to try and just focus on more exciting things, like my upcoming trip to Montreal!