Sunday, July 9, 2017

Day ~594: This roller coaster is insane!

My last post was made on Feb 10th. At the time, things were going great and I was feeling back to my old self. Spin class, long hikes, meeting friends at the gym, road trips and work travel. Two days after that last post (Feb 12th) something changed. I was preparing to leave on a business trip on Feb 15-16th when I began to experience hip pain. Assuming I had worn out my hip flexor at the gym, proceeded with stretches every day and a few chiro visits. While in Atlanta on my business trip, the pain was so bad that I almost drove myself to a local ER.

I got home late Thursday evening, and Friday morning at 5 am I headed to the ER. I was diagnosed with severe sciatica and sent home with pain meds. To make a long story short; there were more visits to the ER. visits with a spine surgeon and my neuro, followed by a rash on my foot/ calve a week later. The diagnosis was shingles.

An MRI showed a severely inflamed nerve root (a lumbar nerve that would cause sciatica) and it was the same nerve path as the shingles rash. Shingles had attacked my spine. I couldn't walk for two weeks. Over the course of several months the pain slowly got better but I lost a lot of muscle and strength. Physical therapy was a huge help. Also patience and gabapentin got me though the attack - even thought I didn't appreciate the brain fog. I learned about holistic treatments for shingles: l-lysine is an amino acid that stops the duplication of viruses and that shingles doesn't like Thyme or blueberries. So l-lysine, thyme tea and blueberries were a regular part of my diet.

I also had to restart IVIG, in the interim, to offset the CIDP flareup that shingles caused. HSCT stopped the chronic behavior of my CIDP - but like any of the diseases that HSCT treats (MS, Lupus, CIDP) - all the diseases post-transplant have the tendency for a flare up when we have an illness or stress. It's still 100% better than being chronically affected.

As of June 26th I am much better. Just as my neuro day your body will act like nothing happened. I still get shocks of pain through my leg from time to time - but the neuro said post-herpatic neuralgia (post-shingle nerve pain) can last up to a year. Shingles sends a neurotoxin out to attack nerves and sometimes it takes your body some time to eradicate the neurotoxin.

Through all this I sold my house in June and have moved in with my beau. Our plans to build a life together have never halted. That man has stood by me through everything since diagnosis and never once wavered or shown any qualms about this journey. Thankful beyond measure that I found him!

The experience makes we grateful (again and again) for the health I was given from HSCT.  I am back at the gym and able to walk normally (in speed and without the limp). I have put the cane back in the closet (for the third time) and hope to not see if for a long while.

I did hear that several of Dr Burt's patients contracted singles recently, so he is expanding the length of time his patients take the post-transplant anti-viral med. At the time, I only had to take it for a year (through Aug 2016), but now patients will take it for 2 years or more. He is constantly tweaking his program for the better of his patients.

Sending love and thanks to my friends who have helped keep my spirits up during yet another FUN filled adventure. My love to my fellow patients who also contracted shingles. Hope you are all on the mend!

Now I am preparing for my two year check up in Chicago this August. Cannot believe how fast 2 years has flown by! Another update will come to share what Dr Burt & Dr Allen have to stay about my health status!

Be well!


  1. My beautiful, god-child! What a roller coaster, indeed! My admiration for your courage, your persistence, and your belief in your ultimate HEALING is beyond description! No wonder you beau has fallen for you: where can he find a girl like you? You are THE true gem! Love you!

  2. Wonder Woman, you are
    Daughter from another mother, you are
    Loved to the furtherest star, you are
    Forever friend, you are

    It's been a rough ride for many people this year, but you always keep shining.

  3. You are amazing. Thankyou for sharing your blog. Good checkup.

  4. It is a roller coaster! I know and I share the seat next to you! Kindred sisters we are and I wouldn't have it any other way. Stay strong as we must. Fight the battles when we have to. Cheers to you for the good times because love, family and friendships are what keep us going. Much love to you my sister! You are amazing!