I'm leaving, and I am still on a high dose of Predisone. Not the 120 MG every 6 hours (I thought it was 8, but it was every 6) down to 20 mg twice a day. I have symptoms slowly trickling back. But I've noticed they start to get worse a few hours before my next dose of predisone and then they get a bit better. Nothing alarming, just I am noticing.
So they are:
tightness in left to center of chest
pain level 1-2 with deep inhalation, not shallow breaths.
shortness in breath while standing and if I also walk ( I find myself kind of panting when I talk, only while standing, not sitting)
And one long continuous pain in the butt, hot like a las vegas sand between the toes, HOT FLASH!! Phewie!!!!!! Get me some water. Cold water. Hahaha
I am over the gross food here, and ready to go home and eat Quinoa and greens.
A few funny things. The hand soap in the bathrooms, while I was doing chemo is the same disgusting stuff in the rooms here. So, I don't wash my hands with that and use the Purell, ( i never used that during chemo). Ickk..just a whiff of that stuff makes me gag! I was desperate and lost my mind last night and wanted to wash my tank top. I get really grossed out and super clean freaky while I stay in the hospital. Germs everywhere. So, I washed my tank top with that disgusting soap, and now I don't have a shirt to wear under my sweat shirt home. Luckily, I washed my hair with a bar of soap, and I haven't gotten a whiff of something that pleasant in a long while. So, I re-washed my tank and have it blowing dry with my hot-flash helping friend THE FAN. Its almost dry.
I am so ready to go home. I am bored. So, who's right? Do I not exercise, or do I? Does anyone really know? NO, they don't. Well....here I go. I am going to take it slow, as I do get short of breath again pretty darn quick. Maybe I'll just have a big summer of gardening. And taking walks. And start running, in August?
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Hang in there despite the hot flashes and hight sweats. You might want to try wicking pajamas. A really cute brand that I use comes from Cool-jams.com
As my grandmother would say, "Oy, oy, oy!" I think you have a great attitude towards your doctors as you realize they are learning as they go, too - although you probably wish they had learned about what you are going through earlier and had more concrete answers.
Keep fighting!
Glad you are home, Heather. Your recent thought to take it a bit easier, is a good one. When you are told it is "ok to exercise," perhaps it did not occur to anyone that you would begin running.(smile) How you and the docs regard exercise may be quite different.
It seems to me that it makes sense to be a bit gentle with your body that is still in radiation, has recently been hammered by chemo, plus the inflammation of your lungs, also pericarditis.
The episodes of lung and heart iflammation happens to to healthy athletes. It takes a long time for inflammatory processes to recover. It usually requires taking inflammatories, AND not doing stressful exercise, ie running, is necessary for anyone who has had your experience, and many superbly in shape runners do have these episodes.
Your new goal of moving slowly toward many wonderful activities that you used to do, is a good one. This might prompt you to consider refraining from running for a while, as a reasonable investment in honoring your body to let it heal. I know you have been historically magnificently in touch with your body. Because you are so eager to get back to baseline, and YOU WILL, being in touch with your body as you are accustomed to doing, does not include your recent chemo, cardiac and lung episodes. These are big hits. For a bit longer, you are still in the treatment/recovery mode.
Jane's husband, a long distance runner, had a similar episode when he was 38. He found out the hard way that if he stressed his body by running, he would have excruciating episodes exacerbating the same situation as your lungs.
I hope you reach a good plan with your docs and yourself, enjoy your garden, and i look forward to seeing you for a brisk walk with me around Green Lake, as we did at the beginning of all of this. I need to learn how to use free weights. Maybe you can show me! I have no upper body strength at all.
You are doing a marvelous reclaiming your world.
Shirley, How sweet! Thank you for your encouragement. I would love nothing more than to come over and show you how to use free weights. I used to be quite the weight lifter. My record for squatting still stands at my high school, i've been told. Buy a set of 3 Ib. weights and call me over, anytime!
Thanks for helping me to feel that this is not a "sentence" that I will have to deal with for so long. It can be discouraging, until I receive a thoughtful post like yours! I have to remember to not let myself slump into the "fear" and negativity that can be attached to these "health" things.
<3 I am glad that you get to go home. No matter what they are for, hospital stays are no fun.
I agree with what Shirley said. Totally.
The smells. Oh, the smells. Every once in a while, I'll get a whiff of that soap, it puts me right out. I have issues with one of the meds I was on - it was bright red like Koolaide, and every time I see it, I gag. It's like flashbacks. I started bringing my own liquid soap with me to the hospital.
It is very important that you listen to your own body and take charge of your own health care. I was lucky, I had my mom to help me with that - I was unable to do it myself. So I'm glad that you mentioned it.
Hope you start being able to be "you" again. You've come so far, baby! Listen to yourself. You know what your body wants.
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