It’s been just over two weeks at the reduced dose to 50mg a day of the prednisone. I wouldn’t say I have seen any drastic or major improvements in the side effects, but I am seeing glimpses of change, and that is good. I also know that it takes time for the reduced dose to make a difference, as your body adapts to it.

Sleep
Gone are the days I am awake until 3am each night (morning). I now average between 1 and 2am. But just the other day, I was in bed before midnight! Although I still wasn’t asleep until 1am, I thought it was a good sign that my mind wanted to try to get into bed that early. So I am now getting 5-6 hours of sleep each night, instead of 3-4. I’ll take it.

Lungs
Seem ok?? My oxygen stats are still super good. The SOB hasn’t been super noticeable lately. However I still have that chest cold that I am still fighting off. I am interested to see if it seems like it takes me longer to get over this, compared to before I was on the medication that are compromising my immune system. I have added ColdFX to my daily pill smorgasbord and plan to just take it no matter whether I feel the symptoms of a cold or not.

Nose Dude/Dudette
One of my previous posts was about seeing the rheumatologist and her plan of the nose biopsy to see if it shows vasculitis, and then that will help deciding about the chemo. And how I was pushing for this to happen right away. Well, I still haven’t heard back from anyone with the voicemail I left. But I saw my family doctor on Wednesday. Just to touch base with her, as I hadn’t seen her since she first saw me at the end of July and thought it may have been a weird looking pneumonia. I really do like her. She explained that seeing an ENT normally takes 3-4 months to get in. So if I was marked as a “rush”, it would probably be about a month to get an appointment. So, my plan is to mention this to my lung doc next week when I see him, and get his thoughts on it too. Gah! The waiting and not feeling you can do anything to be proactive is so frustrating. Like unbelievably frustrating. Like makes me wanna cry frustrating. Along with the nosebleeds being more frequent and taking longer to stop bleeding.

Knees
Even though the rheumatologist isn’t concerned, I am. My knees can become so swollen that I can’t bend them all the way. And I constantly feel them in my knee caps. And they feel weaker than they should. My chiropractor is trying an experiment on me. He is using RockTape, which is designed to pull the skin away from the rest of you, to allow room for the fluid to drain and reduce the swelling. He did it on one knee and we will see the comparison over the next few days. Also, my family doc prescribed me a topical anti-inflammatory.She explained that instead of taking oral Ibuprofen, which can also interact with the prednisone in a not ideal way, the topical will be specific to what we are trying to achieve. I still need to try this, but I want to wait and see the results of the RockTape first. Don’t want to introduce too many variables at once to confuse our experiment!

Skin & Face
The breakouts on my back and chest seem to be settling down. I haven’t been back to the dermatologist yet – she is soooo far south in the city and it’s a trip just to get there. My face still grows…my chin gets in the way when I need to look down. My cheeks become more uncomfortable when I smile.

What else? I’m tired. I love Caesar salad now and never did before my hospital stay. I am still struggling with body image. I love my house.

  

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