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!

Friday, February 10, 2017

Day ~445: The 18 month update!!

It is hard to believe I have been back to work for 13 months. Recovery has lasted the full 18 months and in my opinion it continues.

My oncologist officially released me from her care in January 2017. She is so happy I did this, I was her first autoimmune patient that had a bone marrow treatment. She has been watching bone marrow transplants saved the lives of cancer patients for over a decade.

My neurologist, was never told about my decision to do this treatment, until six months after I did it. Just had my 17 month check up with him. He is blown away and in his own words: "is convinced that the treatment works".

Been cane free for a while now, can't say I miss that life. I owe so much gratitude to my physical therapist, occupational therapist and especially my personal trainer at the gym. Even when I was released from therapy my trainer really helped me work on balance, gait training, increasing my strength and mostly increasing my confidence in myself. Erik! I know you're reading this. Thank you.

It's been nice to get back to work and use my brain in a creative and useful way. Things are crazy busy as usual, but it beats sitting at home thinking about limitations and what I wish I could be doing.

There is a lot of credit due to my tribe. Without my friends and family, who have stood by my side and been the best support system on planet Earth, I don't know that I would have recovered so well.

My beau Chad has also been there from the beginning: diagnosis day. He never wavered, never showed stress, and never had any doubts that I would get better. But even if I hadn't improved; I know he would still be by my side.

The stomach issues that kept sending me to the ER (GERD attacks) seem to have finally subsided. I did catch what I thought was a cold back in December, and it turned out to be walking pneumonia. That took several weeks to recover from and was not fun at all. I do not recommend catching it- lol.

I now enjoy long hikes with my beau, we have some great reservoirs in the area that we get to spend a few hours exploring. Getting lots of friend time at the gym between steam rooms and spin classes.

While I am not 100%, I am also accepting of the fact that I may never be. But I'm 90% better than I was when I had a cane, infusions every two weeks, and fatigue that literally had me printing disability paperwork.

I continue to be an administrator for several support groups on Facebook and elsewhere. Paying it forward is something that I enjoy because I am so grateful to the mentors that I had through the process.

My favorite non-transplant group is my GBS/CIDP exercisers group. We encourage them with coping skills, motivate them to keep moving and building their strength, and help connect them with doctors that specialize in these diseases. This group brings a lot of joy to my heart, laughter to my soul.

My gratitude is through the roof. I count my blessings and wanted to thank all of you for your love and support and being the amazing people that I choose to have in my life.