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Saturday, May 3, 2014

More than you ever wanted to know about my health.

I have put off blogging for many months because I didn't want to write about my health, but I think I need to in order to explain why I haven't been writing about farm adventures or my mustangs.   The autoimmune disease I have, sarcoidosis, is getting the better of me and I have experienced debilitating pain and muscle weakness for many months.   My back is rapidly deteriorating and hurts like the dickens most of the time.  Sarc causes a complicated mineral imbalance, involving the dis-regulation of vitamin D.  The bone from my back is being reabsorbed and jettisoned.   Last year I had two operations on my lumbar region.  The second of which helped relieve a lot of the pain and sciatica.

My tailbone was extremely painful and after a year of asking for an MRI of that region, I finally had one done in November.  This led to a gamma bone scan of my pelvic region.   The tech was very chatty and explained the procedure to me.  She was also reading my prior three MRI reports to me, which I found rather disturbing.  My doctor hadn't been so open with me and spared me all the horrid bits.  The tech explained to me that bones light up (hot spots) if there something growing on them or damage due to an old break or surgery.  Well my bones lite up all over my pelvic region, looking rather festive and she wasn't so chatty anymore.  She told me she couldn't tell me anything and she had to clean up the images.  I requested the radiologists report be send to me, which they did a few days later.  It took me a few days to pluck up the courage to read the report and I wasn't surprised that he diagnosed me with metastases - of the bones and marrow.   I was pretty sure I knew what meant and googled it to make sure.  It means the spread of cancer from one body part to another.

Nobody called me for 5 weeks!  Then the doctor who ordered the test called me and mumbled something about the report being misplaced something or other and he just got the report.  He wanted me to see my GP and said he was going to call him.  Someone from my GP's office called me soon after and told me the doctor wanted to see me as soon as possible.  He broke it to me gently.  He wanted me to either see an oncologist, or he could send off to have all kinds of tests to look for the cancer source.  I told him I wasn't going to do either.

In the five + weeks since receiving the report, I had been reading as much as I could about bone sarcoidosis and also talking online to people who had it.  Like me, they had been told they had cancer and not knowing they actually had sarc, they were really run through the mill and had been very terrified.  Lucky for me I already knew I had sarcoidosis.  I'm surprised nobody didn't recommend a needle biopsy of the "metastases".   My doctor told me that he had to suggest the oncologist and all that in case it was cancer; he then added the other doctor thought it might be sarcoidosis as well.  

Bad news is the sarcoidosis is in my bones/marrow and there's less of a chance it will spontaneously go away.  Some people say they have no or little pain with it, while others say the pain is debilitating.  Some of my lesions give me no pain while others hurt only a little....but the pain in my tailbone has been unbearable, so much so that I went to a pain doctor and an injection into it guided with a c-arm x-ray.  That helped a lot.   It seems I have also have neurosarcoidosis and that would explain many of weird symptoms I have been experiencing for the last 20+ years.  My right side is weaker than the left and my right leg is noticeably smaller, especially the calf.  The latest thing is being unable to sleep on my side because within a minute of rolling on my side I start to get a very bad headache.  I haven't slept well for many months and I'm very tired and useless all day long.  I have a rare form of a uncommon disease and sometimes I feel, as far as medical helps goes, I'm pretty much on my own.  

I hope by blogging again it will get me out-and-about looking for adventure and whatever comes my way.  :)

Meanwhile back at the ranch...  

I took this picture from behind our house a few days ago.
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It's a Great Horned owl chick.  I think he's an only child.  His mum keeps an eye on him from the apple tree.  I didn't go close to him to get this shot.  I walked to the east a bit and then zoomed in.
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The top of the hill above the owl in the first picture is where our family has been scattering or placing departed loved one's ashes for almost 70 years.  Being a non-conformist, I told Brad and William I wanted to be buried under the apple tree next to my horse and DandyLyons, when her time comes that is.  William made me laugh by saying there was a betting pool on which one of us will go first, my cow or me.  lol


Andrea -Mustang Saga said...

I have been thinking of you and hoping all is well. I'm glad to see you back!

I'm sorry to hear you've been feeling so badly. You seem to always keep your sense of humor. I'm pretty sure I couldn't handle it that well. I hope you find time to blog!

Katkrazy23 said...

Glad you're back. I really enjoy your blog. I'm so sorry to here you're not well. You're dealing with it so well, I love your humor. Take care, and I hope to see new post about Bisket.