1. I have been diagnosed with Fibromyalgia. While I am uncertain if that is what is the whole of what is going on, I am coming around to the fact that it is at least part of it. Fibro means joint aches and pains and so much more. Today I am dealing with the fact that my skin hurts so bad the touching things (like the keys of a keyboard) sends pain to the receptors in my brain. Being stubborn doesn't help me here.
2. I have what are called complex, complicated migraines. I have been suffering from migraines daily for a while now. When combined with the above it means that the hair on my head hurts today. Not like man I drank to much last night hurts; nope this is holy hell my hair is too heavy on my skin hurts. My life is a true joy of finding new ways to have migraine symptoms. Seizures, parathesia, edema, blindness, light sensitivity, sound sensitivity, tinnitus, nausea, vomiting, hot and cold flashes; the list goes on...and on...
3. All of the medications for the above have taken away my hunger. I don't get hungry. I just eat when I take my pills because that's what the doctor told me to do. I like food, but I don't get hungry...and when I do eat sometimes it doesn't taste the same way...
4. Prior to my doctor telling me to eat when I took my pills I had lost 20 pounds because I wasn't eating at all unless it was put in front of me.
5. Since then they said that I have gained 40 pounds.
6. That was only a couple of months ago, so I went in for an ultrasound of my liver and another MRI of my brain.
7. Oh yeah I have a brain tumor. It's benign they think. It's the kind you get when you have had a migraine every day for almost a year.
8. There are also 3 holes in my heart; but they haven't caused any of this, because my heart is completely healthy.
Five years ago I was in the best shape I had been in since I was an adult. In the time since I have fought, and beaten, cancer and have dealt with what are honestly beginning to seem like the side effects from that. They didn't give me chemo or radiation. I had four, count them FOUR, surgeries in eight months. I went out after three of them and worked, in one way or another, for at least a week. The third was the only in patient surgery, but I have been told all four were major surgeries. By the end of that year I was exhausted. I have never been quite the same, I stopped working that same year, so neither have our finances.
We moved from Michigan to Illinois just over 2 years ago. We rented a tractor trailer from a specialized company and packed/unpacked ourselves. I did most of the packing by myself due to work commitments that Sar and Crimson had. Our things filled a 28' trailer. I had some amazing help at the end of our time in Michigan; but a significant portion was just me. I had knee trouble when we got to Illinois so our friends here helped us unpack. I haven't been myself since. I have trouble carrying 15 pounds around the house. Standing and walking can be an issue. I am now taking anti-depressants and anxiety medication because of where that kind of pain and debilitation took me.
Some days I can't get out of bed. Some days I can and then have to go back. I am never just fine. I do the things on this blog despite the pain. I want a little beauty in my life again so I am taking it. This isn't a story of someone triumphing over their disease. This is the story of someone living at subsistence level with their disease.
Love what I am doing and want to see more? I am now on Patreon.
No comments:
Post a Comment