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

The end of September/beginning of October means one thing for this adult child; The State Fair of Texas!  Since the beginning of our courtship, Steven and I have been regular fairgoers even adding in custom t-shirts.  Our  first State Fair of Texas as a duo was in 2011 after only a month of dating! Our t-shirt tradition started a few years later with our tagline, "You fry it, we'll buy it!" and aptly named our event "Gorgefest" because we eat ALL of the winners of the Big Tex Choice Awards, which usually requires 2-3 trips to the fair and is between 8-10 food items to consume.  Outside of the food, we love the exhibits, the amazing art deco buildings, and the animals!!!  Pictures highlighting our 2021 State Fair of Texas adventures are at the end of this post. In all my years of going to the State Fair of Texas, the only thing that changed after I needed to use a wheelchair is I became invisible.  I have written about this before and will keep it brief, but...

I said a while back I wanted to write about travel and fun adventures, so here I am doing just that (sort of).  Travel is something I love and can still do, but it is no where near as fun, relaxing, and etc. as it used to be with my current disability level.  Yes, I still get enjoyment out of it or I would not do it.   Frankly, if I do not travel, I may not ever leave home except to ride in a car, so it is pretty necessary.  My husband, Steven, and I booked a last minute trip to Puerto Vallarta, Mexico that we returned home from on July 4, 2021.  We did not take many pictures because this was a simple "go to the pool" kind of vacation.  Of the pictures we did take, it appeared we were having the "normal" relaxing vacation.  Because pictures only show a snapshot in time, I wanted to share the following behind the scenes processes I go through and what I deal with to take a "relaxing" vacation.  Please note, I did do some online reading about travel...

A True Shoe Obsession Knows No Bounds I have been obsessed with shoes since I was very little.  True Story:  I  used to sleep with my new dress shoes when I got them because I loved them so much!  As I grew up, I moved from flats and little girl shoes to heels, which I LOVED! The crazier the colors and styles the more I loved them.  They were like wearable art and made me feel so happy. Fortunately (yes, you read that correctly), I had to let the heels go permanently in 2019 and that was probably about two years after I had only been wearing them sparingly because walking was hard regardless of what I had on my feet.  The reason I say, "Fortunately", is twofold; 1.  The heels were not good to wear for my feet, back, and more. 2. Rather than feel sad about another life change that took away something I loved, I transferred my obsession of heels to athleisure (hybrid of athletic and leisure) shoes.  While I no longer own a single pair of heels, my c...

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...