Quick Health Update

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:

  1. The Urologist gave me a new diagnosis that’s common to CFS, but not curable. At least it’s an answer with suggested treatments.
  2. 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.
  3. 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.🌸

24 thoughts on “Quick Health Update

  1. Samantha

    The heat and humidity have been horrible here in Arkansas and heat intolerance is no laughing matter. I can’t say it wasn’t like this as a child though. One of my first memories is the summer of 1980. We had a severe drought and heat wave. I was only four. No AC in our home or our vehicle. My late grandma put ice water in a glass gallon jar and wet my face with a washcloth when my mom took us on our weekly grocery shopping trips to town. Nowadays, I stay under the AC unless I go to a doctor appointment, but my husband works in this mess. Hope you get some answers on the tilt table test. ❤️

    Liked by 3 people

    1. Oh my gosh, no AC in Arkansas sounds like too much! As kids though we’re so resilient. I’m glad to hear you can stay safely indoors now. It really messes with my heart rate and I imagine you’re the same. I used to love the Summer and now I feel like the grinch.😁 Thank you for stopping in for a read! Hopefully tomorrow will be a little cooler for us all!🌸

      Liked by 2 people

  2. Ugh, this San Diego heat is killing me!

    I have had two tilt table tests. Hated the first, second was bearable. If they schedule you for a tilt table, find out prior to the test what their stance is on administering nitroglycerine during the test. And feel free to send me an email if you have any questions about the test! (Lindsay@dysautonomiac.com)

    Liked by 3 people

    1. Right!? We aren’t equipped for these temps.

      Thank you for sharing your experiences. And the tip! I would have never known to inquire. If I have any questions I’ll definitely let you know. Thank you for offering, it’s nice to be able to ask someone who has walked in those shoes.🌸


  3. I can’t imagine this heat with only a portable air conditioner. I grew up in Michigan and we didn’t have central air. But I can’t imagine this 90 plus heat. I am so sorry you are going through all this medical stuff and dealing with the heat.

    Liked by 2 people

    1. Thank you! I’m nervous, but you are so right. It’s a step in the right direction. I wore flip flops to the appointment and she kept staring at my bluish feet, verses my pale pink arms and face. I kept thinking isn’t that proof enough? Why do you have to tilt me too😉 Time to do some serious adulting. Hoping things are going okay with you!🌸


  4. Beautiful artwork as always. I’m glad to see you are making some progress even if slow and frustrating at times. Don’t feel bad about not educating that dr, it’s not our job to always be “on”. I was diagnosed based on symptoms and readings, not a TTT, though I think that’s uncommon.

    Liked by 1 person

    1. Thank you for your compassion and compliment.🌸 You’re so right, not my job, I just feel so much pressure to get so much information into each appointment with doctors who want to spend about 60 seconds. She was generally good though, so I’m thankful for that. Hoping Winter is treating you kindly.

      Liked by 1 person

      1. Maybe I thought a bit too big with trying a blanket…lol… I’m still working on it, but I cant figure out a way to hold the yarn ( I cant feel my left hand and I am having trouble keeping it tight) but I will keep practicing. As it is, my cat has all kinds of “chains” to play with

        Liked by 1 person

  5. This heat wave is horrible. It makes it extremely hard to do anything. Visiting more specialists is never fun and that is before throwing the insurance company into the mix. I love and adore your watercolors as always, they are fantastic!!

    Liked by 1 person

  6. I’m glad you stood your ground on the bike/exercise front; we need the confidence in our experiences and knowledge of our bodies to take what guidance we can and politely return the rest, especially when it can all too often be harmful. I’m so sorry you’re having to go through all of this with tests and appointments, especially when you’re feeling so whacked out. Please try to rest up as much as you can and go gentle with yourself.
    Caz xx

    Liked by 1 person

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