Don't Laugh. It's Not Funny. It's My Life.: January 2019

The First Three Months Post HSCT (Chemotherapy and Stem Cell Transplant) at Clinica Ruiz in Monterrey Mexico

If you are unfamiliar with what has been going on in my life prior to this post, please read the previous five entries on this blog to gain a full understanding of what I have and am going through.

Please note: I am 43 years old. I was diagnosed with multiple sclerosis in 2012. I likely had it a few years before that. My disease is progressive and started getting noticeably worse year-after-year starting around the end of 2014. By worse, I mean my ability to walk kept declining and today, I cannot run, period, have trouble with jumping, walking down stairs, trouble with walking, and when pretty much trying any repetitive motion using my legs. I can do it (except running) in small doses. It just takes a bit of effort mentally and physically. I worked out through my entire decline and modified as I was not able to do certain movements any longer. The important part is I NEVER STOPPED.

The Expanded Disability Status Scale (EDSS) is a measure the disability status of people with multiple sclerosis. The link below explains it fully. I do not feel I fit the scale well, unfortunately, so I will not give myself a score. My one main issue is walking/gait while the very little else that is going on is minor in comparison.

https://www.va.gov/MS/Professionals/diagnosis/Kurtzke_Expanded_Disability_Status_Scale.asp

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I will be posting blog updates every three months to document my post HSCT recovery experience. This is the first post since coming home from Clinica Ruiz in Monterrey Mexico.

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On Saturday, November 10, 2018, the 13th day after my stem cell transplant, Steven and I took the extremely long one hour and 20 minute flight from Monterrey (where I received HSCT at Clinica Ruiz) to Dallas 😊. Luckily, neither the Monterrey nor Dallas airports were crowded and plane ride was short because I opted not to wear a mask as had been suggested to help protect me from germs. You will learn as you read through this post, I am more comfortable than most with calculated risk.

When we arrived in Dallas, Steven and I had about a mile continuous walk to get to customs. That was a bit tough for me (not to mention I was anemic at the time). While my walking is better, it's still pretty bad. I made it with a couple breaks.

I LOVE being back at home. It was so delightful to return after 28 days away.

On Monday, November 12, 2018 (a day and a half after I returned to Dallas), I went back to my gym (six days a week) and started working full-time from home. This is not typical of person who just returned home from HSCT, but it was my life before and I thought it would be best to get back to routine (especially exercise) as quickly as possible. I also felt great and had full energy (not sure how).

Much to my surprise, it was not hard to get back into CrossFit and Olympic Weightlifting. I feel that HSCT was more confirmation that my four plus years of continuous workouts make a huge difference in my overall well being. I was and am very careful to not put my hands near my face unless I have just washed them because in spite of my behavior, I do understand I have a compromised immune system.

The following lists include the good, the interesting, and the not so good things that have happened since I have been home through my three month stem cell transplant birthday.

The Good

I returned to ALL of my LIFE!

My walking and other movement is a little better. I have not attempted to walk any kind of distance since I have been home, which is where MS has taken the most from me. When it gets warmer, I will.

After working at home full-time for seven weeks after I got home, I returned to work in the office full-time.

I had and continue to have full energy despite returning to my old bad sleeping habits of going to bed between 10:00 PM -11:00 PM and waking up at 4:15 AM (for 5:00 AM workouts).

I regularly eat at restaurants, which the doctor at Clinica Ruiz said was ok as long as I do not eat raw food. I am smart about this regarding where and when I go and extremely lucky to live in a city like Dallas that has a lot of quality restaurants. Most people do not go out to eat for six months post HSCT and is what is recommended.

The Interesting

I didn't lose my eyebrows and eyelashes, per se. From what I could tell, they stopped growing for a time, thinned, and then started to grow around the end of November 2018 and finished growing in around the beginning of January 2019.

My hair is growing back exactly as it was thin spots and all. I will likely have the slowest hair growth of most who have had HSCT.

The right side of my face and only the right side has been breaking out since I was in Mexico. It is highly likely from the bactrim or the acyclovir. I am on acyclovir (anti-viral) bactrim (anti-batcterial) for three more months (total of six+ months). Thankfully, the breaking out is mild enough that an at home microderm abrasion tool fixes it.

The blood levels collected on a CBC (complete blood count) and CMP (complete metabolic panel) along with other tests tend to go up and down after HSCT. I had my blood tested at one month post transplant and I was still anemic and lower/higher on some things than I should have been, which is to be expected for up to two years. I had the second round of tests done after two months and the levels started getting better. I will get my third test today.

The Not So Good

I have fallen a handful of times since I have been home. Most of the falls are from rubber-soled shoes and stupidity.

I may be going through menopause from the chemotherapy. I will not know for sure for a little while longer.

I have developed a smidgen of cold intolerance, so every time I go outside and it's cold, I get a little stiff. There is a good chance this is temporary and as of me writing this post it seems to have gotten a little better already.

I am not working with a doctor here and will not see my neurologist until much later this year. I get blood tests from my doctor's (general practitioner) office to see how I'm doing and if my doctor needs to see me, she will say. I was regularly doing this before HSCT, so this is not something new for me. I am still taking a boatload of vitamins. Some of which I introduced to help me recover from HSCT. I will take the blood test results from my three month post HSCT blood tests to Sundrops, THE vitamin store https://sundrops.com/, to determine what I should change to help any levels that are too high or low. I have been going to this vitamin store since the day I was diagnosed.

Since I only exhibit one main MS symptom (mentioned earlier in this post), I wanted to share the following list of MS symptoms from the National MS Society website that are common in many with MS. Please click this link, https://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms, to learn more about these symptoms and the less common ones (not listed) along with explanations of each, so you can see what others are dealing with. What I have seen and heard is nothing to be trifled with regarding what people live with who have this disease.

Fatigue
Walking (Gait) Difficulties
Numbness or Tingling
Spasticity
Weakness
Vision Problems
Dizziness and Vertigo
Bladder Problems
Sexual Problems
Bowel Problems
Pain
Cognitive Changes
Emotional Changes
Depression

There is something called The Roller Coaster that happens to most people who go through HSCT. To be honest, I do not fully understand it/have not gone through it, so here is a website that explains it.

https://multiplesclerosisnewstoday.com/2017/01/05/phoebes-hsct-story-back-home-last-series/

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Please find pictures and videos below showing some things that have changed for the better.

Hair Growth at + 1 Month