Posted by: Mary Crocco | July 1, 2012

Once again, Living with CML beat me.

I spent too much time in the sun at my grandson’s first birthday party in Sparks. I try to feel and act normal like everyone else, and I never learn my lesson.

Gleevec does not like the sun! When I came home I was fine, but three days later I broke out in cold sores. I’m still a mess.

Upon returning home I went straight to the Lab for blood work. Two days later I had my rheumatologist appointment. The doctor asked if I was sleeping well. I hadn’t seen her since my visit to my mothers, where I didn’t sleep well. Also at my son’s I didn’t sleep much at all for the three days.

The doctor said I cannot be doing this! She said my fibromyalgia from my Gleevec is taking a toll on me. She continued explaining how I am not like normal people and I have to rest and sleep more than normal people. She understands the side effects of Gleevec, one being insomnia, but she said together we will figure out a way for me to sleep well.

She wouldn’t even give me the physical therapy prescription for my legs because I am not well rested. She wants me to go to the pool because it’s the best exercise. I told her I want that too, but my ear doesn’t feel right. It feels clogged, sometimes I have pain, and when I shower I feel like water gets in. She said to wear a bathing cap in the shower. Of course I wear a shower cap with cotton, but will switch to a bathing cap.

However, I told her it’s ridiculous to live like this. I made an appointment for July 9th to discuss ear surgery with my ear doctor. I want to see what’s involved so I can get back to the pool without worrying.

Both doctors are concerned about me getting an infection because of my poor immune system. So I think the surgery will be the right thing to do.

So I’m following my doctor’s orders and resting. I’m still not sleeping all that well, even with a new sleeping pill prescription. I don’t know what it is about sleeping pills, but they don’t seem to work for me. She said to call her before my next visit on the 26th if it doesn’t work. She will prescribe another pill because she wants me to sleep well more than anything else.

I hope my cold sores calm down before Tuesday night’s writing class. It’s so embarrassing. I’m really enjoying the class. We are finished with short stories and have moved on to novels. I’m thinking of changing the short story I’m writing into a novella. I’ll see how I do with this week’s homework assignment first!

Reading and book reviewing are going extremely well. I have made it to a higher level for reviewing and I’m receiving requests from authors that are much better writers than I’ve previously been reviewing for. I’m thrilled! I’ve enjoyed all but one book.

My knees and back hurt daily, and fatigue really took over this week, but there’s not much I can do about it until I get back in the pool. At least I enjoy reading, reviewing, and writing. I just have to remember to keep getting up and moving because if I forget I am crippled. Setting an alarm sounds ridiculous, but it works!

So, July 9th I’ll decide if I will have ear surgery. And one lab visit and a visit to my rheumatologist on the 26th will do it for July. (I hope.)

I’ve got to fit in buying tires and getting my truck emission tested sometime during the month. Not looking forward to sitting in a tire store waiting room. It’s the worst.

Thank you for reading my blog. Feel free to leave a comment!




  1. Mary
    How much the rest of us without a debilitating condition take “life” for granted. My sister and my niece suffer from other ailments, but they too like you have shy away from the light, be diligent about the restrictions of their existence, or pay the medical price in return.
    I wish in these times of modern miracles in medicine we could find a way, to make enjoying a birthday party in the sun, exactly that, a cherished moment with only beautiful memories left in it’s wake.
    Hang in there dear friend. Keep fighting. 🙂

  2. Thanks for your heartfelt comment Monique. 🙂

  3. You have a heart that fills oceans and I had to stop what I was doing to stop by here to read your entry. I understand the photosensitive drugs, mine doxycycline. I understand the lack of sleep. I also understand giving to others when our own exhaustion sets in. You write from the heart and beautifully. Am glad to know you, honored you read my words, and hope we can call each other friends. Paulette Mahurin

  4. Thank you for your beautiful words my new friend! 🙂

  5. Thanks for reading Paulette!

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