Don't Laugh. It's Not Funny. It's My Life.

2021 is Here! I promised the topics of my blog posts would focus more on fun things I am doing and less about multiple sclerosis (MS) since my last 2020 post. COVID-19, a new job for Steven, and a pending home remodel (just to name a few reasons) have kept Steven and me from going on as many adventures as we would like. They will pick up again.  I promise.   Therefore, I wanted to write about a different topic, which is what do you say/do for someone with a physical disability.  Questions I had no idea people had until I became disabled. I have mostly had a positive experience with people out in the public, but I have been asked, "What happened to you?" and a have heard a lot of "Well, you look great!" (an auto-immune disease like mine should not have an impact on my looks, so I never consider this type of "compliment" a compliment or a consolation prize for what I deal with).   On the surface the aforementioned question and comment do not seem harmful, bu...

Reflections on the Last Two Years 24 months is the average length of time generally accepted as the time it takes someone's body who underwent    HSCT   to fully recover.  According to blood tests, I recovered fully three to six months post HSCT, but as you know if you have been following my story, there was no halting/recovery of my multiple sclerosis.  There was that time right after HSCT, I thought I would stop declining and even improve physically, but as previously posted, that was only for a four-month timeframe and then I started physically declining again and I continue to decline.  After these last two years, I came to the conclusion I had far too much nerve damage going into HSCT to have ever had a lasting positive outcome from it.  Like I have said in previous posts and to many people living with multiple sclerosis, it is extremely important to have HSCT early on in the course of your disease. Incredibly, hope is alive and I have not given u...

The Hard Truth and Reality I am continuing to FIGHT to stop the disability given to me by progressive multiple sclerosis, but I am losing the battle.  I am not trying to get better.  I am trying not to get worse.  Without stopping disability progression, I cannot entertain the thought of getting better.    I do not walk at all outside of the home unless the distance is extremely short (like a few feet) and I can hold onto my husband.  Inside the home, I can only take between 10-15 steps with a walker.  I can barely lift either leg.  I found out in June 2020 I have permanent nerve damage in my right lower leg and foot.  Both feet drag on the floor and my balance is really bad.  I voluntarily stopped driving in May 2020.  I still can drive, but I cannot do anything by myself out of the car, so there is no point to me bothering with that.  I did get an AFO (ankle foot orthotic) in May 2020 for my right leg, but it only helps a tin...

Multiple Sclerosis Confusion Multiple Sclerosis (MS) is one of the most confusing diseases for those who do not have it and even for those who do.  For example, I feel great (always have), don't look like I'm sick (never did), and I'm not in any pain.  However, I am quite disabled by MS. I have a lot of nerve damage from the disease that causes my disabilities.  Each person with MS is unique, a snowflake if you will.  We are all affected by where MS has attacked us.  I have a lot of lesions (nerve damage) on my brain and spine, but mainly have issues with walking and balance. Some people with only a few lesions are more impaired in more ways than I (including, but sadly not limited to, experiencing debilitating pain, fatigue, brain fog, heat intolerance, and the list goes on).  There are people with MS who compete in all sorts of sports (typically those who are diagnosed with relapsing remitting MS) and there are people who cannot get th...

I may be a non-responder to Autologous Hematopoietic Stem Cell Transplant ( HSCT - chemotherapy and stem cell therapy), but my fighting mode against progressive multiple sclerosis (MS) has not waned. I am more passionate than ever about finding a way to get ahead of this chronic disease.  I am still doing the things mentioned in previous posts. The main thing that has changed for me is using a wheelchair when I need to go distances that I used to be able to walk a year or so ago along with a lot of wall touching and using Steven for security.  I still LOVE my Segway hover board with a handle (handle sold separately), but I can't take it everywhere. I also found that using one leg (as opposed to both) to pedal my Alinker (walk training tricycle thingy) is doable, so when it gets warmer, I will be taking it out for a spin. I did replace and reposition the seat of this contraption. I mentioned previously that I am not a big fan of the EDSS Scale (measure MS disabil...

As you probably gathered by now, I am a very open person.  That being the case, I wanted to share that I did not respond to HSCT , the treatment I completed in October 2018 to halt multiple sclerosis.  Approximately one out of every five recipients of this treatment does not respond.  I was in a group of six other people receiving this treament at the same time and as of today, I am the only one I know of who did not respond.  How do I know I did not respond?  My walking has been getting progressively worse since March 2019.  For the first six months or so into my decline, I had hope things would turn around, but they did not.   What does that mean? Let me be completely blunt.  It means that my disease may not stop until it kills me.  That is the harsh reality of multiple sclerosis (MS) that I do not believe people talk about much.  Would I still recommend HSCT? ABSOLUTELY!!!  I wish someone would have told me how important ...

My first year of recovery from  Hematopoietic Stem Cell Transplant (HSCT)  has come to a close and my summation is I am different, but not better, which is good.  Let me explain.  I can still walk, but not as far as I did after chemo in Mexico (Clinica Ruiz) nor my first four months being home from Mexico.  Based on information I have read, I have another year of recovery, so things could still change for better or worse.  It's also very important to remember HSCT's sole purpose is to halt MS in in it's tracks.  Symptom reversal is a lucky benefit some recipients of the treatment experience. I did get an MRI this month (October 2019) just to get one and I have had no changes as far as more lesions  (in my brain and all over my spine) in four years.  I wish that meant something, but the way Primary Progressive MS works for me is that my disability got worse while my disease did not change. The following are the items that changed for the bet...