I was diagnosed with Parkinson's Disease and Peripheral Neuropathy in 2006, but my symptoms seemed to take a turn in a different direction in late 2007, and the diagnosis was changed to Essential Myoclonus. Then in 2010 I was diagnosed with Type II Diabetes. Finally, after a muscle biopsy, it was determined that I have Mitochondrial Myopathy.

Share my journey - coping with the testing, the medicines, nutrition, digestion problems, exercise, the emotions, uncertain diagnoses and no telling what else!

"But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint." Isaiah 40:31 KJV

Sunday, November 10, 2013

WOW Has It Been a Year???

I could just as easily have titled this post as "WOW Has It Been a Year!!!".

The last post was on November 3 of 2012, and here it is November 10 of 2013. So much has happened that it's hard to imagine. But one thing is so crystal clear, and that is that we have a LOT to be thankful for!

On November 28, my wonderful hubby had emergency open heart surgery for what's called the Widow Maker heart attack. He did well after surgery, except that something they did in surgery left his left leg paralyzed from the knee down. That slowed his recovery considerably, but he improved enough to be accepted into rehab.

But instead of going home right before Christmas, he was back in ICU, due to a severe auto-immune reaction he had to the heart medicines he had been on since surgery. His platelets (that's what keeps you from bleeding to death) dropped from a normal count in the hundreds of thousands to TWO thousand!

They started pumping platelets in in the morning, only to have his immune system kill them by the evening. They tried one treatment after another, still pumping in platelets each day, only to have the platelet count down that night. So the decision was made to put him on chemotherapy to kill his own immune system and hopefully allow his body to keep the platelets. He was on Chemo for four weeks, and his platelets slowly built up to the point that he was returned to rehab.

Every day I was writing to everyone on Facebook to pray for him, and a large part of our small town and our Church friends were deeply in prayer for him. I'm confident that it was prayer that pulled him through.

It was slow going there, as he was so weak from being in the hospital almost three months, but he's a strong willed man and worked as hard as he could every day. They fitted him with a temporary leg brace, so he could learn how to walk again and do such simple things as getting his own socks on and getting in and out of the bed. So many things we just take for granted, he had to learn a new way of doing them, but he did, and his strength improved, and he came home at the end of February. Home Health made it possible for us to continue his improvement at home, and then he went to out patient therapy for several months.

Yes, we have much to be thankful for. In God's wisdom, the very week that my hubby had reached the point that he was pretty much doing everything for himself, on Easter Sunday night I went to the Emergency Room with severe abdominal pain - and had surgery for a bowel obstruction from 35 year old scar tissue several days later! I had some complications, ended up with aspiration pneumonia, but came home well, but very weak. Then I had Home Health coming out to the house for ME! They did a great job of helping me build my strength back. In fact I was actually stronger when they finished than I have been for the last several years.

But more weirdness was in store for me, it seems. In October my OBGYN did my routine bone density test and found my levels were now in the range to require taking medication for Osteopenia, a dx I had been holding at bay for several years with doses of Calcium and D3 supplements. We discussed which prescription might give me the fewest side effects, and I started the dosage.

Almost immediately I started having severe joint and muscle pain - a sure sign that my Mitochondrial Myopathy was not happy with this medicine. Hoping the side effects would subside, I tolerated the pain, thanks to Neurontin and Methacarbamol, for about six weeks. By then the pain was so severe that I called the doctor and told him what was going on. He prescribed a different medicine, but I decided not to take it until my Neurologist said it was OK.

It took about six weeks to get to see my Neuro, and during that time I was getting by with the strongest pain and muscle relaxer doses I dared to take. When I saw him, he read the PDR sheet for the alternative the OBGYN had prescribed, and told me not to take it. He did ease my mind about how much pain meds I had been taking and actually told me to increase the doses. That has helped considerably.

I'm glad to say that hubby is still improving and walking quite well now with his custom brace without a cane in most situations. That's a far cry from his time in a wheelchair, then walker, then quad cane, and now on his own. Although I am still in a lot of pain, I'm hopeful that careful exercise will gradually improve my situation.

So here we are coming up on Thanksgiving this year, and our family has more than many to be thankful for. We praise God for where we are today. Praise GOD from whom ALL BLESSINGS Flow!!!


Anji Knutsen said...

Hello, you have been through it this past year!

I haven't been blog visiting much recently so it was an agreeable surprise to find you had not long posted.

Take care of each other


Dirty Butter said...

So sorry we've lost touch with each other. I have thought of you, wondering how you were both doing. Hope you are well.

RETA said...

Thank you for writing! What do people do without God? You have found strength in Him and you have a thankful heart. May blessings abound for you!

RETA@ http://evenhaazer.blogspot.com

Dirty Butter said...

I know beyond a doubt that my hubby would not be alive today if it were not for the power of prayer. Thanks for the encouragement, Reta.

PS I like your blog!

Patient-Online said...

It has been too long, my friend! What a challenging year you and your husband have gone through. Thank God for His faithfulness through all of this! I wanted to re-establish contact with the writer of the first blog I ever saw about Parkinson's, predating mine which I started in 2006. Thanks for all the help and encouragement through the years. I hope this finds you well enough. God bless, Dan

Dirty Butter said...

I tried not long ago to connect with you, Dan. But I had trouble leaving a comment.

Thanks for touching base. It's good to hear from you. I'll try again to comment on your blog.