These days I go through life fighting fatigue. I never seem to get caught up on my sleep. I prefer not to nap too often so that I can sleep all night. And I have prescription sleep aids to help me sleep through the night - which makes a huge difference.
Every day it seems I get to a point where my body is saying 'sleep' and my mind is saying "don't, you are driving a car" or "You are at work"... You see the problem.
Last night we went out to dinner and then I needed to sleep. Earlier in the day, I fought off fatigue while driving (and didn't fall asleep). A cup of coffee doesn't always help me with the fatigue and I really do not want to drink coffee all day because then I will never sleep at night. But if I am at work, I have resorted to coffee.
Right now I am doing okay. I got about 11.5 hours of sleep and am drinking coffee. But I may nap later.
May 2, 2016
Apr 25, 2016
Blocking out life
Sometimes I feel I need to ignore life and the rest of the world and focus on my ever growing list of ailments. Its not that I want to, its that sometimes my body insists on being the focus. Like the past few days. And probably the next few days.
I have many other things I would like to do but I have to focus on my health. I will fit in other 'stuff' around my health crap. And it really is crap right now.
I have a feeling I did some damage to my knee, how much I will learn more on Wednesday. It hasn't been contributing basic things like flexibility and stability to the rest of my body for the past few days. This means I can't go to the gym. Actually I don't dare go to the gym. But I really want to go. I think exercise will help me deal with stress. And I have blood work this week as well as two other doctor appointments. Right now I am getting blood work done every two weeks.
I also broke down and succumbed to pressure from my new therapist to try the new fibromyalgia support group. I did point out that I do have multiple ailments and fibromyalgia is one of the less challenging ones to me at this point. I mean its there. It causes me pain, fatigue, and, my favorite, insomnia. It isn't progressively causing damage to my body or lurking in the background, threatening to recur like some of the others.
I was told that the fibromyalgia group should help provide 'coping' strategies. I agreed to go once to see if these 'coping' strategies are really covered and potentially show any benefit for me. But my cynical self doubts that.
I am just stressed, anxious, in pain, tired, and a few other things so life isn't as much fun right now. Call me a cranky cynic right now.
I have many other things I would like to do but I have to focus on my health. I will fit in other 'stuff' around my health crap. And it really is crap right now.
I have a feeling I did some damage to my knee, how much I will learn more on Wednesday. It hasn't been contributing basic things like flexibility and stability to the rest of my body for the past few days. This means I can't go to the gym. Actually I don't dare go to the gym. But I really want to go. I think exercise will help me deal with stress. And I have blood work this week as well as two other doctor appointments. Right now I am getting blood work done every two weeks.
I also broke down and succumbed to pressure from my new therapist to try the new fibromyalgia support group. I did point out that I do have multiple ailments and fibromyalgia is one of the less challenging ones to me at this point. I mean its there. It causes me pain, fatigue, and, my favorite, insomnia. It isn't progressively causing damage to my body or lurking in the background, threatening to recur like some of the others.
I was told that the fibromyalgia group should help provide 'coping' strategies. I agreed to go once to see if these 'coping' strategies are really covered and potentially show any benefit for me. But my cynical self doubts that.
I am just stressed, anxious, in pain, tired, and a few other things so life isn't as much fun right now. Call me a cranky cynic right now.
Apr 18, 2016
What I needed
I originally was going to work yesterday, today and tomorrow this week. But because of office renovations and some home improvement that was supposed to start yesterday, I changed my schedule to Wednesday, Thursday, Friday with Monday and Tuesday at home. (Actually my boss told me Friday not to come in until Wednesday because of the office renovations. And then he called me yesterday to see if I was coming in because he needed me for something. But that's another story.)
Monday I was moderately productive. I went to the gym. I got some work done. I cleaned up the house a bit (for the cleaning lady).
Yesterday, Tuesday, I thought about doing a lot of different things. This is what I did accomplish. I was very lazy.
But I did nothing productive otherwise. I didn't do any gardening. I didn't go for a walk. I didn't run errands. I barely left the house. And I am glad I did. I was home by myself all day with the cats and enjoyed it. Except for the big mess. Here it is.
I was trying to find some yarn and organize it. And there is more yarn in the basement.
Monday I was moderately productive. I went to the gym. I got some work done. I cleaned up the house a bit (for the cleaning lady).
Yesterday, Tuesday, I thought about doing a lot of different things. This is what I did accomplish. I was very lazy.
- I watched probably six episodes of Criminal Minds (the first six to be precise).
- I got some knitting done. I have a craft show in September and want to be sure I have enough non-cold weather items done.
- I sat on the couch and played with the cats.
- I talked to the mason when he showed up.
- I cooked dinner.
- I made a big mess.
But I did nothing productive otherwise. I didn't do any gardening. I didn't go for a walk. I didn't run errands. I barely left the house. And I am glad I did. I was home by myself all day with the cats and enjoyed it. Except for the big mess. Here it is.
Apr 4, 2016
Chronic Illness Truths
I met a woman named Julie on Sunday. I was giving away yarn from my stash that I will never use and she knits hats for homeless people. She also has health issues and understands what it is like to change your life to accommodate your ailments.
Anyway, Julie is writing an anthology of stories of people who are living with chronic illnesses and is looking for people to contribute their story by September 15, 2015. You can find out more on her Tumblr site here.
I find the idea of me writing about life with chronic illnesses intriguing. I have written a lot about life with cancer and my cancers are probably more treated as chronic and not terminal illnesses. They are also not acute illnesses meaning they won't go away. My cancers are symptomless, for now but they could always return, which just adds to the fun.
Life with a chronic illness which is symptomatic is very different than one that doesn't cause a lot of pain. My life with degenerating disks started to cause me some pain in my back and hips. The my life with RA and fibromyalgia is loads more fun. I have pain in many more places and it has changed my ability to work more hours and my ability to get a good night's sleep, walk any distances, stand for more than a few minutes, and all sorts of basic things in life.
I think I will write something for Julie's anthology. If any of you feel the need, check her site and write something yourself.
Anyway, Julie is writing an anthology of stories of people who are living with chronic illnesses and is looking for people to contribute their story by September 15, 2015. You can find out more on her Tumblr site here.
I find the idea of me writing about life with chronic illnesses intriguing. I have written a lot about life with cancer and my cancers are probably more treated as chronic and not terminal illnesses. They are also not acute illnesses meaning they won't go away. My cancers are symptomless, for now but they could always return, which just adds to the fun.
Life with a chronic illness which is symptomatic is very different than one that doesn't cause a lot of pain. My life with degenerating disks started to cause me some pain in my back and hips. The my life with RA and fibromyalgia is loads more fun. I have pain in many more places and it has changed my ability to work more hours and my ability to get a good night's sleep, walk any distances, stand for more than a few minutes, and all sorts of basic things in life.
I think I will write something for Julie's anthology. If any of you feel the need, check her site and write something yourself.
Jan 18, 2016
Medical update
I've been meaning to post for a week about the latest news on life in Cancer Land.
The skin metastasis on my scalp grew and became very ugly during my first round of Ibrance. I haven't seen Dr G since before Passover but did go to my dermatologist. He biopsied a sample, cleaned up the yucky area, gave me antibiotic goop and sterile bandages. The site remains clean and much less grotesque although still seems to me about 50% larger.
At the same time a fistula developed near my port access area. This slow growing opening has been around for some time but is now an open wound. The interventional radiology PA recommended removing my port. That's scheduled for Friday.
Last, the ONJ area in my mouth began to hurt again. If other parts of my body show signs of infection, it's no surprise that my mouth would act up. The dentist prescribed ten days of antibiotics.
That's more than enough for one post. Additional stuff coming soon.
The skin metastasis on my scalp grew and became very ugly during my first round of Ibrance. I haven't seen Dr G since before Passover but did go to my dermatologist. He biopsied a sample, cleaned up the yucky area, gave me antibiotic goop and sterile bandages. The site remains clean and much less grotesque although still seems to me about 50% larger.
At the same time a fistula developed near my port access area. This slow growing opening has been around for some time but is now an open wound. The interventional radiology PA recommended removing my port. That's scheduled for Friday.
Last, the ONJ area in my mouth began to hurt again. If other parts of my body show signs of infection, it's no surprise that my mouth would act up. The dentist prescribed ten days of antibiotics.
That's more than enough for one post. Additional stuff coming soon.