Back by popular demand! I have wondered how many of you are getting tired of hearing from me or reading about all my "junk". I guess this blog is taking on more than just as an update source. It is also becoming cathartic, writing down all my "junk". My shrink had assigned me the homework of journaling, anyways, so I guess the reason for the blog is a little of alot. Again, you have total permission to quit reading, but I'm going to keep writing!
Anyways, many people ask me how I feel. Not just if I feel good, okay, or bad today. But what it feels like in my body. So here goes....
I hurt alot. My whole body hurts, kind of like when you have the flu. My hips and sometimes other bones hurt most, sometimes really bad. I have started having headaches too, which is a new thing for me. I have never been a headache person. This symptom, however, may very well be due to stress rather than illness. From my perspective, I don't care much why, just that it hurts. But I am hoping that as I get my "behavioral" health improving, the headaches will go away.
My hair and nails grow really fast. Weird, huh? It surprises me that from being bald just months ago that I have so much hair. I tried to do a little trimming myself-not so skilled at that. I can't bring myself to go to Great Clips, so it looks like my hair guy may actually get to add me back into his client list.
Acne. Ugh. I don't think I have broken out like this since I was a teenager! Perhaps some of it is hormonal due to surgically-induced menopause, perhaps some stress. But I really thought at 38 I would be past this!
Muscle cramps, spasms, and knots. Undoubtedly stress and malnutrition play a part in this. That starving thing again. And I forgot to also mention that malnutrition also causes acne. Who knew?
The lovely GI system. Chronic diarhea is enough to drive anyone crazy! This also doesn't help with the eating/gaining weight thing. Nausea and vomiting come and go, often dependedent on what meds I am taking.
Fatigue is a huge problem. My body is simply tired. Obviously it is worse when I am not properly nourished and also worsens as the day goes on. But I am so tired of being tired. Sleep doesn't take care of the fatigue. And I wake up alot during the night, whether it be from pain or nightsweats.
I feel weak. I really don't like that feeling. The weakness, fatigue, dizziness, diarhea, and pain interrupt what I want to do and who I want to be.
Essentially, I spend alot of time resting and doing things that can be done sitting.
I also can't drive anymore. Frankly it would be irresponsible to do so. Driving a car and passing out don't usually work out so well. Plus with some of the meds I take, it's against the law. There was also the incident, while on Gleevec and dealing with all of those freaky side effects, including the loss of spacial relationship, that I scraped the side of my car along a bright orange concrete pillar in the doctor's parking garage...... That was the big red flag that I really shouldn't be operating a vehicle or heavy machinery.
I must admit, that to be defiant and give the whole thing the finger, I occasionally, when I am feeling good, drive the three blocks to the grocery store/pharmacy. I take an alley.... In a weird way this helps me feel like I still have a little bit of what I lost.
Other than the above, I just feel weird. It is an intangible description. My best attempt to describe it is that I just feel like something is wrong in my body. Sometimes the sense is greater than others. I find it rather unsettling.
It makes me angry that I have to accept that feeling like crap is now my norm. I am a hostage in my own home. I don't have the energy to do most anything.
Summary: Leukemia sucks!
1 comment:
We think of you often. Tell the boys we said hello.
Craig, Stacey, Sharon and Shayla
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