Monday, October 12, 2015

Pain, the Fourth "P"

I have insinuated on here several times about my illness and that I am "stuck" at home.  Let me clarify of what I speak.

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.



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