A Little Fun for the Not Fully Able

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 something about a wheelchair screams, "I can't speak for myself and I have nothing to offer." The only person who "saw" me on one of our fair visits was a volunteer at an exhibit to let Steven and me know where the restroom was and that they have a handicap/family restroom and where that was located 🤨. 

I am the best version of myself NOW in every way imaginable.  Except for my extremely nerve damaged legs and such 🙃.  I work full-time*, am anally organized (at work not necessarily at home), manage a fast-paced work environment, am healthy (outside of what you see below), am a tenacious about everything I get involved in, I am a seeker of things to do, get sh** done kind of girl, a planner/the planner, responsible for managing the household finances, and much much more.  Yes, Steven helps me, but I help him equally as much.  I give him a lot of credit, but the truth is we can both thrive as individuals. Please try to consider there is a lot that is not seen and that is where I am busy working both personally and professionally!

*This month is National Disability Employment Awareness Month 

National Disability Employment Awareness Month 2021 | U.S. Department of Labor (dol.gov)

Our Favorite Foods out of the 2021 Winners in Order

 

Despite appearances was DELICIOUS!

Fairgoers (Special Guest Appearance by Cary Blum, My Father)

2021 T-Shirt and a Little Glimpse at the Fairgrounds

Behind the Scenes of My Travels

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 traveling with mobility issues in the lower extremities and what I do is pretty much what others like me do.

Traveling with my bestie always makes me smile no matter what!

• No Water

Through lots of years of experimentation, I found that water travels through my body the fastest.  Therefore, I will drink anything but water on my trips (even coffee and energy drinks - weird, I know, but it has been proven to be very effective).  It is not as bad as it sounds and allows me a decent amount of time between bathroom breaks.  I do this because going to a bathroom in a wheelchair is pretty sucky even if you can still stand and move a little like me.

• Planes

I am currently walking onto planes after getting out of my wheelchair at the plane's entrance with Steven walking in front of me and me holding his shoulders .  I get stared at the whole time this is going on and thank goodness I do not care. 

When getting off the plane before asking if I would like to sit or stand while waiting for my wheelchair to be deplaned, I found that 100% of the time I am told there are wheelchairs to sit in as soon as I get off and every single time I have to explain that I will stand.  I understand that everyone is being nice, but it would be good to be asked if I need/want to sit after getting off the plane as opposed to assuming since no two wheelchair users are the same.

• Restroom Planning

Planes:  If I have to use the restroom on a plane, Steven and I have to do the same buddy walk I described above and I have to manage a very tiny restroom while struggling to move. It's super fun especially when everyone is staring at you when you return to your seat. The next step for me would be self-catheterization,  so I would not need to use the bathroom, but I am hoping to avoid that for as long as possible mostly because I do not want to handle one more thing to deal with multiple sclerosis.

Out and About:  I learned what my body feels like when I think I may need to pee, so when at the pool, for example, I try to say I need to go in and use the restroom as soon as I feel like I may.  If I wait, I run the risk of having to go urgently as soon as get to a toilet.  Continuing on with the pool example, Steven gets my wheelchair and towel, I get out of the pool myself if I can or Steven helps, get in the chair, and as was the case at our resort, if there is not a restroom I am comfortable with, we go to our room.

• Pools 

I used pools as an example for restroom planning, but I have more to say about them.  They are not easy for me get in, get around, or get out, but I love them.  Thankfully, I no longer care about standing in front of a bunch of people with my bathing attire on and that once again people are staring at me.  Because I get out of my chair, hold the railing, and can get into the pool, I get why people stare; it is not something you see every day.  I am typically the only person in a wheelchair at a pool, so I suppose that is another reason people stare.

While not in the water, I do okay with the heat, but I am not able to move my legs much with or without the heat.  Therefore, Steven has to be my leg mover.  If my legs are too close together, he has to move them apart.  If I lay down too low on a lounge chair, he has to move me. Not quite relaxing.

• Handicap Rooms

Thank goodness for handicap rooms (meaning I am glad they exist), but I am worse in them.  Also, thankfully, we only had a handicap room for one night when our return flight was cancelled.  Let me explain.  I still get up and "walk" with socks on (holding on to walls/inanimate objects if I do not have a walker with me).  If there are no slip floors, I am in danger.  If there is toilet far away from the sink and I am on my feet, it is much harder for me to get there, and if the shower is meant to wheel into and I do not use a wheelchair to get to the shower, it is not good for me.  Unfortunately, people ASSUME because I'm in a wheelchair I NEED a handicap accessible room, so I have gotten them without being asked if I needed one and I am already running on physical ability fumes, so I do not bother to ask for a new room because I don't want to move again.

The funniest part about this is outside the handicap rooms, I almost always have to climb bus stairs, van stairs, and the like because they lack handicap accessibility. 

The room we had for the full trip was not handicap accessible and was much easier for me. All I can say to the world is please do not assume how much help someone needs if they use an assistive device.  Ask them! 

• Meals Out

Those who know me know eating good food is one of my greatest loves.  I do not like to eat in my wheelchair.  Before I can speak or do anything, my chair at the restaurant table is being whisked away and Steven and I have to explain I will get out of my wheelchair and into the chair at the table EVERY. SINGLE. TIME.  I like this because I feel like my old self at least while dining, I am at the same level as everyone else and I do not spill/get food all over the chair that I use in place of my legs.

• Packing

I had no idea that my planning and organizational skills would be put to the ultimate test when I could no longer pack completely on my own.  I have to know all my clothes and shoes in my head to start mentally thinking about what I need.  I have to make a packing list (not something I did until now).  I do survey my clothes and if I am able to gather some I do.  Then Steven has to do the rest while I watch and try to make sure I get all my stuff.  If I do not see all of my things go in, I may not know where something is when we get on our trip and it is very stressful to miss something you wanted on the trip. 

This trip would not be complete without...

• Someone commending Steven for doing what he does for me, which always makes me feel like a burden.  I get it.  Again, just people being nice that do not realize the effect it has on me. 

• A driver at the airport asking Steven if I could walk while I was sitting in my wheelchair beside him, so he did not have to lower the ramp.  Steven said I could and I said, "She can talk too.".  Then I popped out of my chair and made it up the steps without help other than the railing (it is hard to do, but I do it).

The Good Stuff

I do drink alcohol on occasion and yes, I do enjoy it.  It is not great for me physically, but at this point I have nothing to lose.  The fruity drinks were sooo good!

 

I love seeing animals at resorts!  This cat was very loved and well cared for by all.  This is one example of a bit of joy I get from vacationing. 

I very much appreciate the beauty of exploring and seeing new things.  This picture of the sunset is completely unfiltered.  I sat at our table and Steven got the shot, so I did get to enjoy the sunset from start to end!

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 collection of athleisure shoes is growing and with that so does the smile on my face.  

Here are some of my favorites from my collection, which include "fugly" pairs and more than a few pairs I designed myself*.  I definitely still feel like I am wearing art, so what could have been a sad change turned out to be a fantastic one I am embracing.  Multiple Sclerosis has taken a lot from me, but it has given me more than it has taken and for that I am forever grateful.  

At the very end of the shoes, I included pictures of my latest wheelchair purchase, which I decided to decorate in my mature style.

*The photographer may have taken a few shots of the left and right shoe in the wrong order and if that bothers you, I am very sorry.  I get it. 😁

New Manual Wheelchair (Karma - Karman S- ERGO 305) for My Growing Wheelchair Collection

 

Advice from a Wheelchair Captain

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, but they are.  

I put together the list below to illustrate what not to say or do and why when interacting with someone who has a physical disability.

Suggestions for What NOT to Say or Do for a Person with Disability(ies)

1.  Do not help without asking. 

     Also, keep in mind if help is offered due to an assumption that the person cannot perform         the task themselves, the offer may be offensive (I know this gets tricky.).

      You may always ask, "Is there anything that I can do to help you?"

     The reasons why are plenty and the following are some:

• People with disabilities will typically ask for help if they need it.   
• Touching a person or devices used as an extension of that person like canes and wheelchairs, is invading their personal space.
• You could cause an accident.  Personally speaking, that is the hardest part about unwanted help, it throws me off, derails my train of thought, and makes me feel like people do not think I can do anything for myself.

2.  Do not say, "I don't know how you do it. I could never do that."

No one thinks you are a bad person for saying this.  This statement has been uttered by me in the past and to me since becoming disabled.  I did not understand the harm in this type of commiseration, but I do now.

It is akin to saying your life is the worst case scenario or that to be disabled equals a life less than good.

 3.  Do not say, "You are so lucky you have a great spouse who takes care of you."

This is another statement I never thought was offensive until I became disabled and understood what hearing it over and over again made me feel. For me, Steven and I met and fell in love long before I was as disabled as I am now.  I take care of Steven just as much as he takes care of me. I do feel very lucky to have won the lottery of husbands, but he is not the sole reason I am here today.  We have a true partnership.

4.  Do not say, "You are an inspiration."

Let me start by saying, this statement has never bothered me, but I can see why it is not a statement to make to someone going about living life as a person with disabilities.  It may seem a little patronizing and remind the person with disabilities how different people believe he/she is by marveling at them for going to the grocery store, for example.

The reason I am okay with this is because I bust my butt every single day and have for years to fight this disease while working full time and managing a lot of things between.  Because I work hard on much more than my disabilities, I will take it. 😁 

5.   Do not speak to the companion of a person with disabilities and ignore the person with disabilities.

This has been happening to me quite a bit and I do not like it at all (Steven has noticed as well)!  I feel like I am a woman back in the 1950s.  If I am with Steven at a store, more often than not people will address him and ignore me.  I have a college degree, work full time, and make important decisions all of the time.  I never realized a wheelchair would communicate, "Hey, do not bother with me.  I have nothing to offer and clearly I cannot communicate because I am sitting in a chair".

6.  Do not ask "What happened?"

I guess when you see a person in a wheelchair and cannot identify by looking at them how they may have ended up in a wheelchair, you may find yourself blurting out, "What happened?".  This is another one that has not bothered me, but I understand why it would to most others.  It implies an accident occurred or some kind of mistake rather than being aware there are thousands of different reasons someone may be in a wheelchair.  If you feel you must know why the person is in a wheelchair, ask, "Do you mind me asking why you use a wheelchair (cane etc.)?"

7.  Do not provide unsolicited advice.

It is natural and frankly great so many people care and want to help make things easier for people with disabilities, but the odds of offering them something they have not already thought of are slim to none especially for those of us who have been living with disabilities for a long time.

If you are ever in doubt about what to say just remember the "Golden Rule" maxim and treat others as you would like to be treated.

Bonus

I have a very difficult time answering one very simple benign question and that is "How are you feeling?".  The reason it is difficult for me is because I feel great almost 100% of the time, but physically, I am a mess.  I am not always sure what people want to know when they ask this question, so I have started answering with the full truth and that paraphrased is "I feel great, but MS is killing me.".  Here is a link to a blog post that illustrates why people with chronic illnesses may not like such a question: Answering the Dreaded Question: “How Are You Feeling?” | CF Foundation

Reference

Kelsey Logan.  "Answering the Dreaded Question: 'How Are You Feeling?'" CF Community Blog, Cystic Fibrosis Foundation, 24 May 2018,  https://www.cff.org/CF-Community-Blog/Posts/2018/Answering-the-Dreaded-Question-How-Are-You-Feeling/.  Accessed 27 Jan. 2021.

 

 

HSCT Non-Responder Life with Progressive Multiple Sclerosis +22 Months through +24 Months

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 up.  I am still working out with trainer designed workouts.  I continue to modify the movements as needed.  I am working full time (from home), and I go on many adventures too. Things are much harder to do is all.

Still Saying "No" to Drugs with One Exception

Ocrevus, the only multiple sclerosis drug that MAY halt progression for an undetermined amount of time, is not something I am interested in taking.  All of the drugs for MS tend to have low efficacy rates and undesirable side effects.  To me, the risk outweighs the potential reward.

After a long hiatus (approximately 9 months) from Ampyra, the drug whose sole purpose is help people with multiple sclerosis walk (there are zero other drugs offered that do this for MS), I decided to take the left over pills I have from the last round of taking Ampyra to see if anything happens.  The best I can tell is the drug is helping minimally, if at all.  Of course, when I run out, I am uncertain if I can get it/afford it.

My personal belief is that unless scientists and doctors find out how to repair myelin (protective nerve covering) all of my nerves with damage to the myelin are just like electrical cords that have been partially severed and are no longer performing well or at all.  Think of an old electronic piece of equipment getting worse as it ages.  The same is true of my faulty immune system, I am getting worse as I age. I do believe in the importance of  maintaining a top level of health, but not sure anything I am doing will halt my disability progression/heal my damaged myelin, the cause of my physical decline.

The Latest 

I am working on a heavy metal detox along with a vitamin D protocol that may help, but needs a bit of time (like months to years) to figure out if it is helping me in some way.  I have been working on this since the end June.  I am still trying to get all the vitamins right for me.

I am using TaoPatches again to see if their if their nanotechnology to convert your natural body heat into "microscopic beams of light" that heal your body is effective at all.  They were once back in June 2020, but now not sure they are doing anything, but I am still wearing them in case something clicks.

I remain without anger about what has happened to me, but I do get scared, anxious and frustrated, which results in crying, but other than that, I manage pretty well. Ok, I can ONLY say that because of my amazing husband!  He does SOOOOOOOOOOOO much for me and as a result I live a pretty normal life.

I, according to two different doctors, have permanent nerve damage in both lower legs (knee down through the feet) and it is NOT dropfoot, which I may have called it in the past.  It is hard to explain what this nerve damage is like, but it makes it really hard to lift either leg and that is the disability that was mounting over last couple years and thought it was weak hip flexors.  I cannot believe after all of this time I am still trying to figure out what is going on with my body.

The Future

I have spent the last two plus years documenting my experience before, during, and after HSCT/living with progressive multiple sclerosis.  I plan to continue, but going in a slightly different direction. My greatest joys in life come from spending time with people I love doing what I love; learning, traveling, and eating (not necessarily in that order), so I plan to write about doing those things with progressive multiple sclerosis.  Of course, if something remarkable comes along and I start to get better physically, I will definitely document that!

I may share some videos in the future to show people what life is like with a big disability.  However, it is sad and can be very depressing to see, so I shy away from those things.  I am not depressed and I would prefer that people reading my posts do not feel that way after reading them either.

Hair - Lots and Lots of Hair

Hair at 22 Months Post HSCT - When hair grows at the same time and rate from varying heights...

 

Hair at 23 Months Post HSCT

Hair at 24 Months Post HSCT - I straightened my naturally curly hair to show the growth from the time as bald until now with only two hair trims in 24 months.

The Full 24 Months of Hair in Review

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HSCT Non-Responder Life with Progressive Multiple Sclerosis +19 Months through +21 Months

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 tiny bit if at all, so I do not wear it regularly.

I am almost 100% dependent on my husband.  If it were not for him, I could not live independently.  I am still able to make it to the bathroom by myself, but there is very little else I can still do on my own physically.

As grim as that sounds, I am still fighting all day every day along with working full time at home (that last bit is a huge blessing). 

The following are my tried and true battle tools along with along with a couple new ones to fight for my present and near future.

• Exercise:  I am STILL working out six days a week (and have been working out continuously for over six years).  There have been a lot of modifications along the way, which is how I keep going.  My workouts continue to be designed by a trainer to maximize the benefit I get.

• Food:  Despite what my social media postings of food may make you think, I eat really well

• Customized Vitamin D Protocol with Michael Cawley (Michael's private group on Facebook:  https://www.facebook.com/groups/629001147449412/ ):  I started a vitamin d regime at the end of June 2020 with a gentleman in Ireland who has had a lot of success treating people with multiple sclerosis (including himself) with this protocol and giving them a better life.  We shall see if he is able to help me.  At the very least, I am giving my body a break from the absurd amount of supplements I was taking.

• Ampyra (https://ampyra.com/):   Is the first and only brand prescription medicine indicated to help improve walking in adults with multiple sclerosis (MS). 

I was on this drug twice in my past and it was amazing.  Unfortunately, when I started taking it for the second time in my life around the end of November 2019, it only worked for about a month and then it stopped working. I plan on giving it a try again pending the vitamin d protocol outcome.  Meaning if the vitamin d protocol helps, I will try Ampyra again. 

• TaoPatch (https://www.taopatch.co/): TaoPatch is a nanotechnology device that converts heat from your body into light, which it sends into your nervous system with immediate health benefits.

These patches are pretty amazing if they work for you!  I used the patches for five weeks and temporarily stopped when I started the customized vitamin d protocol mentioned in the bullet above because I wanted a "clean slate", so I would be able to tell if the protocol is helping. 

 

I had one miraculous afternoon during my second week of wearing the TaoPatches where I walked without assistance and with very little balance issues.  I did not have that same response again, however.  I will resume working with the patches after I give the vitamin d protocol more time.

 

If you have been following my story you know that I had four amazing months after HSCT (https://hsctmexico.com/) where I thought I was going to be the best I had been in years and that all ended beginning in March 2019.  As mentioned above, I had around one fantastic month on Ampyra where it looked like things were on the up and up and then that drug stopped working.  Recently (and mentioned above), I had one beautiful afternoon where I could move freely again thanks to the TaoPatches.  No one knows why things work and then stop.  I do not understand scientifically, but always figured that it is because my multiple sclerosis progression has not stopped.

I have tried other things; some mentioned in previous posts and some not.  Some have helped a little, but nothing earth shattering, which is why they are either not documented or not written about much past the first time I posted about them. I have more things wrong with me physically than listed too, but figured you get the gist.  

Without myelin (https://en.wikipedia.org/wiki/Myelin) repair, it does not appear there is way for me to get better/stop the disability progression.

I hear things like be happy and positive and I am almost all of the time, but I have a huge monkey on my back.  I am living with the reality and proof that I get worse physically every year.  I have to watch myself continue to decline without knowing if it will ever stop and I am 44 years old.  That is not the happiest thing with which to deal. Do not get me wrong.  My life is great and I feel so fortunate, but I would not wish this disease on my worst enemy. It's only for the strongest people and those people still struggle!

 

I am tracking my hair growth until 24 months post HSCT, so here it is in its full glory!

Hair at 19 Months Post HSCT 

Hair at 20 Months Post HSCT

Hair at 21 Months Post HSCT - I straightened my naturally curly hair very poorly