Posted by: Mary Crocco | May 5, 2012

At one point, she said to me as she cried, “I used to be fun.”

May 5, 2012

At one point, she said to me as she cried, “I used to be fun.”

I’m a few days late writing my monthly Living with CML entry. I don’t have the energy and my elbow is very painful, but I want to write what I can.

I’m looking at the notes I took for April and there’s a lot to write, but I’m going to have to skip them and just write the most recent. The last entry said that I was getting ready for my trip to see my mother.

Before I write about my visit . . . I decided to go to a rheumatologist for my body pain I was having. When I went for my 6 month oncologist appointment, all my blood work was great. I know Gleevec has side effects, but I just felt this pain was different. So, I went and sure enough, I was diagnosed with fibromyalgia. I am too tired to write about the visit, so to make it short and sweet, I’ve added another RX to my list.

A couple of days before my flight my tooth gave me pain. I just had them cleaned the week before. My dentist took me the next day and applied a surface resin as she couldn’t find the source of pain. She did this so I wouldn’t have a problem in NY. I filled a penicillin RX too, just in case she said.

My visit . . . my mother lost more weight and shuffles when she walks. Her knee and leg pain prevent her from walking. I tried to stay strong, but it was very sad. She can only sit for a few minutes and walk with her walker a few minutes at a time. She rests on the couch or in bed in between. When I touch her, I can hear her bones all over her body! It is such an awful sound. I feel like she is breaking whenever I touch her. I did whatever I could for her but the psychotic episode she suffered months ago has left her with a side effect of experiencing no joy. She doesn’t laugh or have fun.

I cooked a lot of special dishes and included her in the preparation. She said she couldn’t do it, but I managed somehow to get her to help. I read her a book and she seemed to enjoy that a bit. I was happy she reacted to the ending because it showed a reaction.

The night before I left I booked another flight for the 19th – June 2nd. I need to buy her clothes that fit as she lost so much weight. I took a favorite bathrobe she was in the middle of hemming on the arms and bottom and it’s at the seamstresses right now. I’m getting a pretty border put on too and I think she will be surprised! It’s what she was going to do herself.

Her nurse let me borrow her car so I was able to food shop. I hope she lets me borrow her car again. I can use my brother’s car, but it would be after he got home from work. I’d rather shop in the day.

I left her with a freezer full of rice bowls of chicken, pork, and beef, all with her favorite veggies. Meals on Wheels only bring one meal now, so the bowls are easy for her. She told me last night they are delicious!

The flights are hell; my body just has a hard time. The flight attendants hate me as I have to keep getting up and down to walk. I paid for Wi-Fi and my iPad relieved some of my craziness.

I go to the new rheumatologist on the 16th for my 2nd visit to see how the new RX is doing and check my liver. I have to have blood work done before I go. I’m so sick of lab work.

I’m going to my son’s home in Sparks this Thursday to watch my grandson Friday night and Saturday. I can’t wait! Rich has a Mother’s Day plan for me and his mother-in-law and his wife for Sunday. I’ll return on Monday just in time to go to the lab for my Wed. appointment. Then I’ll have a few days to rest before I leave for my mother’s on Saturday.

I spent Easter with my son Bob. We went to the park and had lunch and ice cream. He read my blog about getting beat up at the park. We talked about that story. It was fun!

Okay, fatigue is taking over big time.

Next month I’ll write about my 2 weeks at my mothers. I hope it’s a good visit and I can get a smile from her. I miss my mother. At one point, she said to me as she cried, “I used to be fun.”

My heart broke . . . tissue time.

Thanks to anyone who took the time to read this! I appreciate it 



  1. I got an iPad today! We can face time! I’ll be in ny 21 June-26 and would like to see grandma. Anything she needs let me know and I’ll pick it up.

    • You will enjoy your iPad! Too bad we will just miss each other when you are in NY. I hope your visit to Grandma’s is a good one.

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