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New Year New Start!

I have decided to restart this blog as a kind of record of our family and my journey through my disease.

A lot has happened since I last wrote on this blog.  WE graduated our youngest child Hannah so we are no longer homeschooling.  Our middle daughter Faith got married and divorced after her husband cheated on her.  She was devastated by this but is now in a relationship with a really nice guy.  Hannah is engaged and is planning a wedding in September of this year.  Justin got married in 2016 to a really nice lady who had two little girls and he has adopted them.  They had a son in October so our grandchildren now stands at 4.  My dad died in 2015.  He had been suffering from Alzheimer's for a while. 

In 2014 I started falling and started having trouble walking up stairs.  I had an ovary removed and after that I would fall and couldn't stand up without assistance.  We thought maybe it was connected to the operation so we went to the doctor.  He admitted me  to the hospital and a neurologist was added.  They couldn't give a definitive diagnosis but sent me to a rehab hospital for 2 weeks where I had physical therapy as well as occupational therapy.  I had to have many tests including Emgs , where they shock your muscles and stick needles in your muscles to see how well they are working, MRI, spinal tap and others that I have forgotten. I had to go in several times a week for IVIG.  I had lots of physical therapy and had aqua therapy.  Still no definitive diagnosis so went to another neurologist, he wanted to perform plasmapheresis which is basically replacing your old plasma with new.  Decided to get a third opinion, or fourth or fifth I forget how many opinions by now,  Went down to Johns Hopkins in Baltimore.  He said I definitely had Diabetic Amyotrophy.  Yeah a definitive diagnosis, boo on what the diagnosis was.  Diabetic amyotrophy usually affects men in their 70s, only 1% of all diabetics, I was a women in my early 50's so it was very rare for me to get it.  I also had very well controlled diabetes.  This disease is neuropathy on steroids.  Causes lot of nerve pain and nerve damage.  Nerves grow back very slowly, I will have to walk with some kind of assistance.  I was in a wheelchair for awhile, graduated to a walker then to a cane.  Then I developed a sore on the bottom of my right big toe.  Now I have been going to a podiatrist to have it debraided.  I  now have a aircast that I wear when I go out and a scooter for home and when I go out.  I sometimes use a crutch when I don't have to do much walking but still wear my aircast.  This year I will probably be having an operation to have a tendon transferred in my right foot to raise my foot higher as I have a drop foot from the nerve damage.   Then I will have to wear a cast for 6 weeks. 

Because of my health problems I am disabled now and no longer work. 

We got a 1 1/2 year old puppy in May.  His name is Prince and he is my companion when my husband is working.  He has brightened my days as I also am dealing with a bit of depression because of all of the physical problems. 

I hope to write on here consistently but I am not going to make any promises as my pain medication makes me pretty blah and I can't always concentrate. 

This post first appeared on Always Look Up, please read the originial post: here

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New Year New Start!


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