My monthly post of complaint

YARGH! $%^#!!!!!

Let’s start with something positive.

The physical therapy is working. My non-pool PT Courtney after a few sessions of doing basic stretching finally really listened to me and is not skipping the stuff that I do every day anyway and is physically moving my muscles and joints in ways I can’t and it is starting to help. She moves my hips joints to release them and add mobility and she makes my legs the same size and she is trying to break up the fascia in the hip joint. Definitely regaining a lot of mobility. I meet with my main PT on Friday for evaluation so hopefully we can push this a little harder now and fix it.

I am so frustrated by my lungs. SO FRUSTRATED!!! I haven’t heard from the infection disease doctor yet, I will call his ogffice today and start pushing. I swear if I call and they do not have any info on me yet I will just lose my mind. Does no one realize that I am dying? Not figuratively but literally? I mean, okay, probably not but that can happen with this. The longer it’s untreated it can spread to your other organs and cause permanent damage. Okay, honestly that’s not what I am thinking about most of the time. I just want to breathe normally. I whistle when I breathe now. And my fingernails turn blue for most of the day, and the weirdest thing is my body temperature. When I wake up it’s at it’s high of 97.1 and then it drops as the day goes on. My lowest so far is 95.1. It’s crazy and it just feels funny.

I want to sit on my deck in the sun with the cat and the dog and bask like a lizard but I can’t because it’s 48 degrees.

Today I am moving my summer clothes downstairs!! I don’t wear long sleeves anyway because of my arms. πŸ™‚ Is there a cream or ointment that makes your skin cold? Like Icy Hot without the hot? Every once in awhile my arms freak out and turn bright red and the hives start popping up. The only thing that seems to stop it is ice. It doesn’t happen often and so far I have been lucky. It’s happened in a hospital, at home and at Physical Therapy, all places where ice packs were available. But it would be nice to be prepared if it happened elsewhere. I think it’s a stress reaction.

Quarterly CT Scan on Thursday! You know I love to see those!









5 thoughts on “My monthly post of complaint

  1. I’m so sorry … I haven’t been paying attention…I didn’t know you haven’t gotten any treatment yet!!!

    I don’t know of anything like icy hot without the hot….Vicks?

    1. I called this morning, I mean it’s really only been three business days for them, and I meant to leave a nice professional message, but it quickly degraded into a please pelase please call me…..type of message.

  2. I am sorry that you’ve had to resort to begging to get someone to talk to you. I sure hope it works and they get back to you soon.

    Have you considered talking to a pharmacist about something to put on your arms?

    Have you mentioned the body temp drop to anyone yet? Their take on it?

    1. Not 15 minutes ago I thought suddenly that I should ask a pharmacist! My cream works very well, it’s a few times that I need something different.
      No, I haven’t mentioned the temp to anyone. I see my oncologist next Tuesday so I will tell him. I will also resort to sending them after the infectious disease docs. They are good at getting stuff like that taken care of.

  3. I am glad that you have someone that helps you out when you need it.

    And great minds think alike! πŸ™‚

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