Unexpected Priveledged Problems When You have disabilities, Wear AFO’S /Leg Braces & Have A Neuromuscular Disease Like Charcot Marie Tooth or MS.

FIRST WORLD PROBLEMS

Disclaimer:

All problems are relative to the person, situation, demographic, & resources . The following “problems” are those faced by me, an admittedly privileged suburban woman with invisible (not obvious) physical challenges due to an inherited neuromuscular disorder called Charcot Marie Tooth (CMT).

The hashtag #firstworldproblems refers to those everyday, non life-threatening, and sometimes superficial  ”problems” many of us encounter as middle & upper class suburbanites.  Despite our various chronic conditions & physical challenges, most of us are fortunate enough to have our basic needs met, like food to eat & a roof over our heads. The absence of food & shelter = BIG PROBLEMS. 

With that said, it totally sucks that my top 8 #firstworldproblems have to involve disability. Why can’t I just have ”normal” first world problems?, like for example, learning that Starbucks has discontinued my favorite latte, or that I can’t  use my SkyMiles to book a vacation during winter break? Wait, I have those problems, too…Ugh!

 1. It’s Hard To Stand Still While Being Spray-Tanned Naked

Getting a spray tan when you have a neuromuscular disorder and wear afos Desc - Photo showing woman getting spray tan as it relates to having an invisible disability and bad balance due to CMT

You wanna know what’s worse than standing buck naked in front of a total stranger while she closely examines and airbrushes every inch of your body

Standing unsteadily buck naked in front of a total stranger while she closely examines & airbrushes every inch of your body. 

Even though it’s hard and I don’t enjoy identifying myself as disabled, I needed to have a conversation about my invisible disabilities with the spray tan place beforehand. You can read more on having these type of conversations, in my post, A Recipe For Asking For Help.

First, there’s the problem of taking off your clothing & shoes. When I began going to Sol Potion Spray Tanning Studio, they didn’t have chairs in their tiny changing rooms adjacent to the spray rooms. Once I explained my ”problem” to the owner/sprayer, she immediately took a chair from the lobby & brought it into the room.

I use a wall to hold on to when asked to bend over (sorry for the visual) and because I already told the technician that my balance sucks, she moves extra quick. Although the entire process is uncomfortable, it’s well worth it in the end. I mean, If I’m gonna make the effort to take off my leg braces and stumble around a pool in a bathing suit, I might as well attempt to camouflage my thigh dimples and look bronzed & healthy doing so, right?

 2. I Won’t Win The ”Neatest Chip Pile” Award At The Blackjack Table

Casino games are hard to play when you have a neuromuscular disorder and disabilities like charcot marie tooth disorder

Due to progressive hand neuropathy, there are a lot of things I struggle with that once came easily…Like, writing with a pen, buttoning clothing, using a zipper, twisting off toothpaste caps, etc. On a recent trip to Las Vegas, I discovered yet another task that requires a steady hand and use of a pincher grip, playing blackjack.

When you lack fine motor dexterity, black jack chips are not easy to grip & hold on to. I quickly learned that the unspoken, ”stack your chips into neat piles” rule was a futile effort. Each time my fingers touched a chip, it felt like I was playing the nightmare game of Jenga, where you’re supposed to place pieces on top of an unsteady tower without knocking it down. Impossible.

Also, there’s a whole lot of hand coordination and math involved both not my strong suits.  But, once the dealer got the hang of my ambiguous ”hits” and ”stays” and started to compute the math for me to speed things up, we eventually got on a roll; I was up $300 for about 30 minutes that day… until I wasn’t.

 3. When Traveling, There’s A 50/50 Chance Of Setting Off Metal Detectors & Not Having Time For A Sit-Down Airport Breakfast

TSA Precheck helps if you wear afos/ leg braces and have disabilities, but not always

Airport Security Is a pain in the as$ for everyone, but especially for those of us with not obvious disabilities. I’m not gonna go on & on about the challenge of having to take off your shoes or explain why you can’t take them off & need to be patted down instead. Many of you have been there, done that. 

But, here’s the really annoying part. In order to avoid the whole taking off my shoes or having to ”explain” that I wear leg braces and can’t remove them etc ordeal, I decided to make an appointment at the TSA office and pay for pre-screening. This, I was told, would allow me to go through the faster TSA pre-screened line where you didn’t have to take your shoes off or go through those scary (and hard to balance in holding your hands over your head) enclosed machines.  Wrong!

There’s a ”randomly selected” clause in the TSA pre-screen agreement, which of course I didn’t learn about until I was randomly selected on the very first trip I took as a new TSA pre-checker.  Those extra 30 minutes reserved for a healthy pre-flight/vacation egg white omelet, turned into a stress-filled wait for a Starbucks latte & a 3000 calorie chocolate chip muffin I stuffed in my mouth before boarding.

 4. My Nail Technician Complains About Me In Vietnamese

Women getting a manicure illustrating how its difficult to do so when you have a disability & hand neuropathy

I have switched nail places & technicians countless times. Unlike some of my ”able” friends who enjoy getting manis & pedis, I rank going to a nail salon, just slightly above getting my teeth cleaned at the dentist. Basically, I go because I have to. My fingers suck (hand neuropathy) & it’s difficult to grip & open things, so having decent nails sometimes helps. My feet, well….At home, I use an electronic file on a regular basis to prevent callouses, but my toenails need more TLC than I’m capable of providing.

The manicure problem is mostly during the polishing part. It’s like my hands have ADHD and literally cannot stay still while the technician applies polish and especially while waiting for them to dry. Pedicures are more involved because my feet are fused (they have metal plates inside to prevent movement/injury) and won’t ”turn” on command. 

First, there’s the fact that I have to remove my leg braces sitting in a narrow space while curious onlookers take notice. Second, after the technician sees the leg braces, she inevitably begins to say random things about me in her native language to nearby co-workers. Then, I have to somehow communicate that I have a ”problem” with my feet, but there’s nothing she needs to do differently. eg. Please don’t skimp on the calve massage part.

I always leave knowing exactly what the technician is thinking when I leave: ”She’s a pain in the ass, but at least I got a good tip.”

5. I Can’t Hear All The Good Mom Drama From The Bottom Bleachers.

If you dont have good balance due to a neuromuscular disorder like CMT or MS, you have to sit on the bottom, bleacher and often miss out.

Can you believe they still make aluminum bleachers without handrails?  When I was a school aged kid, the thought of tripping and falling down them was just as frightening as having to run relays in gym class.  Despite those fears, my balance must not have been so bad back then, as I have a few memories of sitting with my friends at the very top.

I had a flashback about this last year when my son Blake was playing basketball for his high school freshmen team. When I arrived at the first home game of the season, a few dads I knew were already there and sitting on the very top level of bleachers. I waved and took a seat near the bottom. Actually, I sat on the very bottom and then scooted my ass up another row so I could at least see the game.

When my mom friends arrived, they stopped by my unofficial ”handicap” and grandparent area to say hi and chat for a minute, before making their way up to join their spouses at the top. I experienced what teenagers call FOMO (fear of missing out) that day. I wanted so badly to have the balance to get up & down from the top without assistance, but I knew the risk wasn’t worth it. So, I sucked it up as those of us with physical challenges learn to do.

Don’t even get me started on stadium seating at concerts. At least there, I blend in well with the unsteady drunks.

6. I Can’t Slide A Hotel Key Card & Hold Coffee At The Same Time

It’s hard to hold a hotel key card when you have a neuromuscular disorder and disability

I haven’t done a study, but, I’m thinking that those hotel ”security” elevators that won’t budge without using a key card, rarely if ever, hinder actual crime. I mean if you’re a  ”bad guy”, wouldn’t you just take the stairs anyhow? Unless you’re a bad guy with physical challenges, the stairs are a lot faster, right?

Those ”security” hotel elevators are pointless and just an added stressor for those of us with weak hand grips & other disabilities. It’s hard enough to hold the flimsy key card still in order to open the room door.  How do they expect people to bring hot coffee back to the room and fidget with a card one handed?  Perhaps, key card elevators were never intended to provide added security, but instead, were a genius hotel marketing ploy to increase the number of guests ordering overpriced room service?

No way I’m falling for it – Next hotel stay, I’ll just use the deadlock on the door to prop it open while I go & get coffee and wait until someone else goes into the elevator with their key card. Hopefully, said bad guy isn’t reading this.

7. I Take The ”Fine” Out Of Fine Dining.

I get stains and make a mess eating due to having disabilities and a neuromuscular disorder CMT

I’m a hot mess most of the time, but especially when eating.

People are always picking food out of my hair or alerting me to imminent food stains & potential disasters. ”Be careful….there’s ketchup on your elbow” or, ”I’ll get some club soda ….it’s hard to get zip sauce out unless you treat it right away.”

There are always crumbs on my lap when I stand up to go the bathroom, and busboys tend to give me confused looks in between courses, when they have to clean up more than just the salad plate.

I am also a bit high maintenance when ordering  (my family if reading this, is definitely shaking their heads in agreement). ”Please, may I have a tall glass with ice and a straw, NOT a stem glass.”, ”Can you please chop the salad… I have trouble with my hands?”

When I was a little girl, my mom enrolled me in a manners class called, White Gloves and Party Manners. They taught us table etiquette like, how to set the table, which fork to use with what course, and how to eat ”like a lady”. I’m thinking of creating a table manners workshop for people with invisible disabilities. I’ll share all of my best ”eat like a Lainie” secrets and giveaway Tide To Go Wipes and designer inspired adult bibs.

8. My Halloween Costume Choices Are Limited

Finding halloween costumes that work with afos/ leg braces is not easy.

I didn’t really love playing dress-up or even trick or treating as a kid. It was ok when I was a young girl and just went to a couple of houses with my dad and sister in toe. But, I hated it as a pre-teen. This was before I had to have surgery on both ankles to prevent them from turning/breaking and well before I began wearing leg braces as adult.

I’m sure I would have liked trick or treating had it been with just 1 or 2 friends, but we went with large groups of girls, and it was always a struggle to keep up & not trip over whatever last minute princess gown I found at Kmart.

But, the last 10 or so years, I’ve been invited to an annual adult only Halloween party given by a fun couple in my neighborhood. The year before their first party,  my whole world changed when I found a pair of knee high flat leather boots that I could walk in & that fit comfortably over my leg braces. They were a total game changer as I was no longer destined to a life of frumpy dresses and I found I could look stylish pairing short dresses with tights and tall leather boots over my leg braces. You can read more on finding boots for afos/leg braces in my Boots are A $#&# blog .

But, there are only so many age-appropriate and somewhat sexy Halloween costumes that work with tall flat boots. Believe me, I’ve spent endless hours searching on Pinterest. I figure Batgirl has another 2-3 years max before she’s forced into retirement.

The End

 

What do you think? Can you relate to any of my #firstworldproblems? Please share your thoughts in the comments section below. I love hearing from my Imperfectly Perfect friends.

 

💜

Lainie

8 LIFE LESSONS ONLY A GIRLFRIEND WITH NEUROPATHY WILL TELL YOU

We learn lessons from the moment we can comprehend. Some are taught in books and classrooms, and some are learned from experience.

I was diagnosed with a progressive neuromuscular disorder in 2nd grade. No one ever taught me how  to actually live with the physical challenges of having Charcot Marie Tooth Disorder.

After being diagnosed, there was no sit down ”disability talk” like the one we had about the ”birds & the bees” when my mom used the ”What’s happening to my body” 70’s picture book as her talking guide. Doctors offered next to nothing after diagnosis and ”Living with a Disability 101” wasn’t offered in college.

The following 8 Life Lessons are from my own ”live and learn” experience. Some are ones I wish I had learned earlier in life, and others are ”funny now”  but not so funny then, lessons from one Perfectly Imperfect  woman to another.

 1. DON’T USE YOUR TEETH; THEY CAN FALL OUT

This is no joke. About a year ago, While attempting to tear a bag of dog treats open with my mouth, my top front tooth (dead center of my mouth two days before leaving for Cancun ) literally fell out.  I will spare you the scary visual (my husband used it as a screensaver for awhile to annoy me) but it wasn’t pretty.

Because my fine motor skills suck, I used my teeth to open things in a hurry; which was and still is almost always. After the tooth fell out and I endured 7 long months of back & forth trips to the oral surgeon, having to wear and clean an uncomfortable retainer with fake teeth & over $8000 in dental bills, I  learned my lesson.

 2. CARRY SCISSORS

Since the ”tooth incident”, I always carry a pair of scissors I found on Amazon with me and have several pairs in both my bedroom and kitchen where I’m likely to use my teeth to pull or open something when rushing. The large soft-grip handles are easy and comfortable to hold. 

I use the scissors daily to open things I once used my teeth for like, Splenda and Crystal Light packets. You can click the link to purchase a pair on Amazon here.

 3. DON’T GET OUT OF GYM CLASS

When I was in school, I was embarrassed about not being able to run and jump like other kids. I hated recess and gym (the two things most kids love most) and didn’t want my peers to see my weaknesses.

My mom asked (more like told if you knew my mom) our pediatrician to write a note giving me a permanent exemption from required gym classes. She loved me and didn’t want me to uncomfortable. If you’re parenting young kids with physical challenges, heed my advice in all capitals for emphasis, DON’T GET THEM OUT OF GYM CLASS; unless of course, your child’s medical professional advises it.

My mom thought she was helping me, but giving me an out from gym class, did just the opposite; It reinforced my belief that it was not ok to be different (Read more about my history in my Blog Skinny jeans & leg braces) and gave me a lifelong excuse for not participating in physical activities. I didn’t learn then (it took 30 years) how to assert my needs and talk about my disability, nor did I learn resilience, which is the secret sauce of having positive self-esteem.

 4. IF YOUR CORE IS STRONG IT CAN COMPENSATE FOR WEAKNESS

I didn’t start regularly exercising until my mid-thirties. I had no idea what I was able to physically do because I never tried. I used my disability as an excuse but looking back, I was probably just lazy. After I had kids (and an extra 20 pounds of weight) I joined a gym and tried various classes. Check out my post called, A Recipe For Assertiveness to learn more about handling group exercise classes with a disability.

I’ve tried many cardio and strength training exercises and classes, but Pilates,  has literally changed my body and life. I am stronger and in better shape today ( my abs have 2.5 of a 6 pack of lines) then I was at 30 , because of regular Pilates practice.

Pilates was originally created for the purpose of rehabilitation and it’s an ideal exercise for people with neurological issues, as you are almost always holding on to something or lying down.  The focus of pilates is on strengthening the core (stomach, lower back, hips and buttocks) muscles via either mat or equipment based exercises . A strong core can make up for weak peripheral muscles when climbing stairs or getting out of chairs.  I can’t tear small packets of sugar, but my strong upper arms can open jars and push others in wheelchairs. 

To keep the pilates straps secure on my feet, (both of my ankles are fused with pins and have no movement) I need a secure foot bed. I found the exact pair used in physical therapy treatment and bring them with me to every class. They are $65 for the pair but invaluable to me as I could not do most pilates exercises without them. You can get your own pair here.

 5. ALL TAMPONS ARE NOT CREATED EQUAL

If you are a man reading this, you may want to skip ahead. This lesson is for my Girlfriends who have fine motor issues, still, menstruate and use tampons. There might be like 5 people left reading this, but hey, if you help one person right?

Depending on the brand and material, some tampons are easier to insert and remove, than others.  I find the plastic Playtex brand applicators are easier to use than the cardboard Tampax brand. But, NEVER USE the small generic kind given out for free in some airport bathrooms.  Let’s just say, that after an entire day of frustrating attempts to remove the said object, and an hour of Google searches on Toxic Shock Syndrome, I embarrassingly went into my Gyno’s office for assistance.  One final tampon tip, if traveling outside of the US , remember to pack plenty of your own supplies as some sell tampons without strings attached.

6. HAVE BACK-UP BRACES

I am completely dependent on my afos (leg braces) and have to wear them anytime I put on shoes to leave my house. I completely rely on them for balance and to help me walk. It is with the help of afos that I am able to walk for miles at a time without getting tired, climb up hills , and even ride a bike. The recommended 10,000 Fitbit steps a day is easy to get with the help of my afos. But, Take away the brace and I’m completely screwed.

I learned my lesson several years ago while on vacation. You know how when you notice a pin size crack on your windshield, you’re supposed to get it repaired right away, or it will spread, and you’ll end up having to replace the  entire thing?  Well,  when I ignored a pin size crack on one of my afos and the next day it completely cracked. All plans were off since I could barely walk with just one afo. I’ll never forget how helpless I felt and now pack an extra set of afos in my luggage.

7. CREATE A FEET EMERGENCY KIT

Just like the first aid box we keep on hand for our kid’s scrapes and insect bites , it’s a smart idea to have supplies on hand for your feet emergencies.  If you’re an orthotics/afo wearer, you already know invaluable band-aids and moleskin are for preventing friction from painful blisters & callouses.

Once, when my afos were ruined from being accidentally dropped in a lake, I discovered how hard it is for patients to find the material needed to make straps. I ended up purchasing two knee braces from a local drugstore and rigging its straps to use for my braces.

I now have a go to foot emergency kit filled with extra brace straps, velcro tabs and almost every Dr. Scholls foot care product ever made.

8. JOIN OUR PERFECTLY IMPERFECT TRIBE

The best thing for anyone living with physical disabilities and neuropathy is to have a positive mindset and focus on the things we can control. While we may not be able to fix the cause of our neuropathy, we can decide how much attention we pay to it and how it impacts our day to day lives.  If you, like me, choose to focus on looking and feeling your best and not on the suckiness of your disorder/condition , you will be happier and healthier.

A good start if you haven’t already done so, is to join our ”perfectly imperfect” tribe at http://www.trend-able.com so you don’t miss a better living with a disability tip or Blog. Next, come visit our Trend-Able Facebook page and/or follow us on Instagram for a dose of daily positivity. Hope to see you there.

TREND-ABLE INSPIRATION

This amazing documentary about the super fabulous Bernadette Scarduzio is a must-see and it will stay with you long after viewing.


The film (available on Amazon Prime) shares a very personal glimpse into Bernadette’s life; the many challenges she faces, incredible losses and her resilience. Bernadette suffers from Charcot-Marie-Tooth (CMT) disease, a genetic disease affecting the nerves of the arms and legs, and she is a huge source of inspiration to those of us within the CMT community. She continues to help raise awareness about CMT through her work at the Hereditary Neuropathy Foundation.

Since the release of the movie Bernadette’s life has changed in many ways. In particular, she quit smoking and learned to drive a hand-operated vehicle! She has also connected with a huge community of people with CMT, many of whom have become close friends.


When I spoke with Bernadette recently, she said, I am honored to be one of the leaders for CMT awareness and I will never stop fighting for those of us who can’t fight for themselves.” You can reach Bernadette at HNF.

Visual Handicap vs Invisible Disability

INVISIBLE PHYSICAL DISABILITY 101

The saying “You Can’t Judge A Book By Its Cover” has a literal meaning for those of us with invisible physical disabilities and challenges.

When people think of the term disability, they mostly picture people in wheelchairs or those using walkers or canes. Those little blue signs designating special parking and larger (usually cleaner) bathrooms are distinctly labeled; wheelchair users can park or pee there. 

I love this fabulous illustration by Amber

These assistive devices symbolize to the world that the person using them has either a temporary or permanent physical disability. They are treated differently.

The summer before I started high school (in the dark ages before internet and iPhones) I had a major operation on both of my legs and had to wear two leg casts and be in a wheelchair for 6 months. It sucked, to say the least.

My best friend Stacie used to push me around the hallways at school and the mall on weekends. People would either stare or avoid eye contact altogether. People who weren’t that nice felt obligated to be nice because of the wheelchair.

I could sense people’s pity; being the object of pity is a powerless, crappy feeling.

Of course, I was only visibly disabled for a short time and cannot possibly understand what it’s like to be a long-term wheelchair user.

After I had the leg casts removed, I could walk and looked like a “regular” teenager again. My physical disability was no longer obvious and became an invisible disability.

On the Invisible Disabilities Organization website, they quote an SAAP 1994/1995 study that states, 1 in 10 Americans have a severe disability. Out of those with physical disabilities, only 74% use a cane, walker, or wheelchair.

Those of us with Invisible Physical Disabilities and challenges have a unique set of challenges. For example:

I could easily fall on my ass in a slippery parking lot but rarely use a handicap space for two reasons:

  • I feel guilty What if someone with a wheelchair doesn’t have a place to park? I can walk. Am I just being lazy?
  • I will be judged – I will get a dirty look, rude comment or accusatory note on my car from ‘REAL’ disabled people and/or their advocates.

 

I love this fabulous illustration by Amber from Colitis Ninja. http://www.colitisninja.com

Although Amber’s graphic refers to Invisible Illnesses, people with Invisible physical disabilities can easily input our own “What You Don’t See” at the bottom.

 

As a teenager, mine would have been:

  • Scars on each foot
  • Surgically implanted pins on each ankle fusing them in place

 

Today, I would add,

  • Two leg braces up to my knees
  • Hands that can’t write or do buttons
  • Bruises from tripping

 

Tell us what people see and don’t see when they look at you.