What is up with this heat? It’s not just here in San Diego either, it seems like it’s widespread. I know, I know it’s Summertime. Where I live it didn’t used to get this hot so homes are not regularly equipped with air conditioners, that includes mine. Do I sound like a whiny brat yet? 😉 I do have a portable AC in my bedroom and it does blow cold air my way but it does little to actually cool the room. If you too have a chronic illness you know that chronic illness + heat intolerance + comfort are not entirely compatible and I’ll leave it at that.
Whelp it’s Tuesday, my self-designated day to blog, but the heat has me in such a fog that I’d completely forgotten until a few minutes ago. So, I thought I’d just do a quick catch-up. Basically, if you’ve been following along you know I was recently sent out to five new specialists based on my most recent lab work. I’ve been to three of them. Two of them weren’t referrals that would even see me (insurance company issues) and I haven’t had the energy or the desire to completely deal with those yet. And as for the three I have seen:
- The Urologist gave me a new diagnosis that’s common to CFS, but not curable. At least it’s an answer with suggested treatments.
- The Hematologist sent me for more labs, which confirmed, once again, three different types of anemia, and referred me to another Neurologist (this will be Neurologist number three) but my follow-up with him is next week so I don’t know what his plan is to tackle any of them.
- And the Cardiologist (this is Cardiologist number four) is sending me for more testing but noted POTS in my chart. To be confirmed by tilt-table test. This was the first time I’d taken in screen shots from my Fitbit heart-rate readings, as well as blood pressure cuff readings. Wondering if anyone reading this didn’t have a horrible tilt-table experience? The thought of subjecting my body to more stress on my system feels very counter intuitive right now. She also was adamant that I should try to ride a recumbent bike. I didn’t know whether to laugh or cry. I just said no, and when she brought it up again my son said no, absolutely not. I had asked her at the beginning of the appointment if she was familiar with CFS. She said yes. Obviously, she meant kinda. Sorry doc, I tried exercising because previous doctors before you insisted it’d be the cure and now I’m worse off than I ever was before, but thanks. I didn’t have the energy at that point to explain to her what Post Exertional Malaise is and how it affects those of us with MECFS. I feel guilty for not having explained it to her, but there’s always next time. Hopefully she won’t harm anyone with that advice in the meantime.
So that’s my update in a nutshell. My body/organs seem to be growing increasingly tired. I’m trying to take it day by day and not stress myself out because as we all know, it could be worse. I’m trying to stay happy because it’s good for my health and I’m trying to keep absolute faith that our cure or treatment is around the corner. Now if someone could turn down the heat a little, I’d be really appreciative. 😉
Here are a few more of my little doodles/watercolors. They are a little quirky, I’ll blame that on the heat. Hoping today has been especially kind to you.🌸