A rash of crime…

The primary care doctor should initially help with every issue before it becomes a conflagration of irritation. But, disappointingly, this can often lead to the beginning of a hoop-jumping obstacle course as no dog show has ever had. These PCP doctors want to help their patients with quick alleviation from their ailments. However, they only sometimes know where the line in the sand lies before requiring the attendance of a specialist. The following is my torturous torpid tail as I traveled through the veteran’s administration medical world in search of a rash rescue.

I had a patch of skin on the top of my forearm, slightly smaller than two half dollars side by side. Unfortunately, this rash plagued me with itchy, dry skin and redness that Rudolph the Reindeer would be proud of. Attempting to solve this problem myself, I tried various over-the-counter ointments, creams, lotions, and potions to no avail. Each product resolved one issue but left several untouched, encouraging me to try them all at once, again without relief. I wore the rash like jewelry, all shiny and red, but the itching was brutal, especially when I got into bed.

This attempt at self-healing continued for over a month, trying each lotion for several days or more. I tried this lotion for a week, cream for three days, ointments for two days, and potions for nearly three weeks. My effort at holistic healing was a battle that made for a long and arduous process rivaling any military maneuver. At the end of this time frame, I had nothing to show for it except for more rash and less cream shrinking my medicine cabinet and wallet. Finally, my Boy Scout and Marine Corps first aid training encouraged me to search for a medical professional to step in.

I was sitting in my doctor’s receptionist area, eagerly waiting to hear my name called as I felt I was the next up to bat. To prepare for my Primary care doctor visit, I listed things I wanted to discuss during the appointment, searching for my irritation alleviation. My rash had grown again, making me anxious to show my doctor and receive a rapid remedy to eliminate my excessive scratching. Since my red, bright blemish was the priority for this visit, I put it at the end of my discussion points to allow more time to talk.

Doctor Hernandez was all smiles when he greeted me upon his arrival in the exam room. He was from Mexico and very talkative about VA Hospital politics, the treatment of veterans, and even medicine in Mexico. Hernandez was quite loquacious, making our random conversation last twenty minutes before we got to my list. I tried several times to interrupt our meandering chat to discuss my list, but it felt like fighting a losing battle as the doctor continued our wandering. Finally, the doc drove our conversation back into the center lane to discuss my list and the reason for my visit.

Storing my list on my cell phone, I opened the app and read eggs, milk, and cereal. I realized it was the wrong docket and quickly fumbled with my phone, trying not to waste the time of Dr. Hernandez. Instantly I opened the correct list and began my continual query as to the solution for each thing that bothered me. Although the tabulation was somewhat lengthy, we breezed through all the items until we got to the rash reason for my visit.

I explained that the primary purpose for my visit that day was simply a brutal blemish that marred my arm and caused excessive scratching. Within the span of a blink, the doctor looked at my arm and then looked back at his computer. Then, without hesitation, consideration, or explanation for my consternation, he whipped out his prescription pad and scribbled away. I told him I wanted the prescription mailed to me to avoid the pharmacy, and he quickly replied absolutely.

This topic was a minor, although incredibly itchy, issue that an ointment prescription should have resolved, allowing an open and shut case. However, sadly, my story was anything but open and shut, making for a red tape travesty that took too long. With the Veterans Administration, many redundant and unnecessary steps cause a slowdown in veteran treatment. Of course, many veterans are probably reading this and nodding their heads in sympathetic understanding. Although this is the end of my blog, it is far from the end of my story and the rash reckoning to come. 

 How do you eat an elephant? One bite at a time.

I owe my soul to the company store…

This blog entry is part two of my new neurologist doctor’s visit to a faraway land called Gainesville, Florida. I had been in Florida for approximately six months and was unfamiliar with all aspects of Floridian life. However, arriving from Ohio, my surroundings were very different, and so was the Florida Veterans Administration. So please accompany me as I continue the story about my first neurological doctor visit to the Florida Veterans Administration.

As we wiped our teary eyes from the excessive laughter, Nurse Joy walked me to another hallway waiting area. Several people spread around the waiting area like pepper on a dinner plate, so I rolled in and became one of the spicy seasonings. The majority of the waiting patients chatted and gathered around a doorway anonymously labeled room 421. Just then, a thought popped into my brain, and my head swayed back and forth as I looked for a restroom to prepare for the facility’s inevitabilities.

At that moment, student doctor Lisa stepped into the hallway and called my name, reminding me that timing is everything. This precise predicament made me think of that old commercial where the person desperately searches for a restroom. As they seek this resolution solution, their brain screams, “Gotta go, gotta go, gotta go right now.” At that point, my body hauntingly said to me in an evil villain voice, “Not yet, but soon.”

Dr. Lisa guided me into a room on the other end of the hallway, and I tried making her laugh, but sadly, not everyone has a sense of humor. The space was open, with a computer desk, a floor lamp, a medicine cabinet, and an examination bed to satisfy the American Medical Association. While it was large enough for its contents, it was still small, and negotiating the room in my manual wheelchair made for tight maneuverability. Lisa began by asking a plethora of probing puzzles that only I could solve using my life’s MS history. Next, we roamed my past with a fine-tooth comb as she jotted, dotted, and scribbled notes in my medical records. Finally, after about twenty minutes, Lisa said it was time to get the primary doctor and left with a purpose.

I sat for just a moment to wait for the doctor and quickly changed my plans, and peered out the door. I entered the hallway searching for a men’s room to release without haste, hoping to return before the doctor. However, my body reminded me that “not yet, but soon” quickly became time to search for a lavatory. Around the corner and passed an empty receptionist’s desk, I found the restroom and rolled in. I was unfamiliar with the surroundings, making the task take much longer than the typical procedure.

When I reentered the room, Lisa introduced me to Dr. Chan, a neurology doctor with the Veterans Administration. I apologized for my excessive absence and explained my bladder and unfamiliarity with the surroundings were to blame for this lame game. Unfortunately, wasting time was not on the agenda for the doctor as she ridiculed my medication choice, as it was not one of the standard MS meds. With a smile, I vehemently stood my ground as our verbal sparring continually discussed her medical degree versus my owning my body. I do not believe she appreciated my smile just then, but this discussion was one disagreement in my life I knew I would win.

Suddenly, a loud knock on the door startled us, taking the wind out of our sails and briefly disrupting our contentious conversation. Dr. Chan stood up, answered the door, and met medical assistant Sandra. The MA shared it was her doctor’s time for this room and requested everyone’s departure. Chan explained she needed just a few more minutes, and Sandra accepted and walked away.

The doctor returned to the lost cause conversation and began fervently praising the MS medications again. I smiled and nodded as I felt this conversation was superfluous and unnecessarily raised my blood pressure from the at-times heated discussion. Another rattan-tat-tap came to the door, quieting our senseless conversation and another visit from Sandra. Chan tried throwing me under the bus to get more time by explaining I visited the loo, which cut our time. The medical assistant, Sandra, was not having it and requested we vacate the room.

We stayed in the hallway after our eviction from the room, briefly discussing final issues and future goals. I do not feel that Dr. Chan and I talked about anything that concerned me about HIPAA issues, as the hallway was empty. Instead, the doctor explained that she wanted me to research the medications for MS, which was a straightforward task for me, as I was uninterested. Chan also made plans for me to get an MRI of my brain and spine, hoping to find that elusive new plaque that would prove I needed her MS medications.

I was exhausted from my meandering expedition to get to the location in the building to see my new VA doctor of neurology. Since I saw this doctor in a neurology clinic, I am still determining if I will get to see the same doctor every time. However, I am unhappy with the doctor because she spent the entire time quarreling with me about medication. Only time will tell how the Florida Veterans Administration works for me and how I will manage the system.

Day is done, gone the sun.

Lost in a Land Down Under…

Setting up my many doctor appointments after moving to Florida was a dreadfully daunting duty. In Ohio, I saw various “ists” like a urologist, podiatrist, and even occasionally, a phlebotomist, to name but a few. So when it was time to see a VA neurologist, I knew it would be an excursion to the Veterans Administration in a faraway land. Unfortunately, I had to travel just over one hour to Gainesville, Florida, to see a doctor of neurology through the Veterans Administration. Of course, I am not complaining about this travel time because many of my veteran brethren must travel much farther.

Once I had the doctor’s appointment, I scheduled a ride to a place approximately seventy minutes away. They quickly approved me for a VA door-to-door transportation service that uses accessible vehicles. Greeted by the driver, Tom, and trainee Daniel, they carefully strapped me into the minivan like I was a package from Saks Fifth Avenue. The trainee was quiet even when I tried to involve him in the conversation, although Tom was more talkative, which felt like it reduced the distance.

So, after a long seventy-seven-minute drive, we pulled up to a portico where I could exit the vehicle to see this massive building monstrosity. This edifice looked like three VA facilities from Columbus, Ohio, could fit inside the structure with room to spare. Tom unstrapped me from my tie-downs, then Dan pulled me from the van and pushed me into the building, thus concluding the door-to-door service. The receptionist desk was prominent, while the waiting area was capacious and filled with plenty of waiting customers. Donna, the front office worker, helped me check in and then asked me to sit in the lobby and wait for a volunteer helper.

The Veterans Administration has volunteers working to help the veterans navigate their buildings. Volunteer Michael pushed a large empty cart of trays and stopped to guide me to my distant destination. I moved like a snail late for a hot date, so I asked for help pushing, and “immediately” was his reply, and he instantly stored his cart. Mike is the nickname he used instead of Michael on his name tag, but he quickly grabbed the push handles on my wheelchair, and away we went. 

Mike pushed me through the building, past mostly anonymously labeled doors when we arrived at the elevator. He caught the elevator’s door just before it closed, and we rode it up to the third floor, where everything looked as clinical as the previous floor. Rolling down the long hallways and making two right turns and a left, we soon arrived at a small window labeled neurology clinic. The receptionist, Cliff, whistled like he had no care in the world. He then explained we were at the wrong neurology office and proceeded to tell us, well, tell Mike where the other neurology clinic was and gave directions on how to get there.

As we departed the first clinic and headed to the second, we made one right turn and two lefts, stopping back at the elevators. Mike and I arrived on the fourth floor as the directions led us to neurology clinic number two, and I began the check-in process again. Although I called her popcorn, receptionist Michelle asked my name and started rapidly tapping on her keyboard, sounding like the corn snack popping in the microwave. Then, she asked me to sit in the waiting area, and I quickly replied with a smirk, “I sit in every room I am in,” Michelle laughed out loud.

I was anxious, so it felt like I waited for hours, but it was less than ten minutes in the hallway waiting area. Finally, nurse Joy took me to a cubicle with medical supplies, a cart with a computer, and just enough space for my small manual wheelchair. The nurse had an exuberant, jovial attitude that matched her namesake, and our amusing chuckles often thundered out of her cubicle. Our laughter was harmonious, though it caused my vitals to be out of sync, causing a ten-minute process to become a thirty-five-minute endeavor.

It was an extremely long and exhausting day that would go in the record books of facilities to avoid because of distance. Thankfully the Veterans Administration in Florida uses video appointments, making in-person meetings rare. My neurologist Dr. Fein prefers that I have an office visit four times a year, yet only one must be in person. Stay tuned for next week’s thrilling conclusion of the visit to my new Florida Veterans Administration neurologist Dr. Fein.

You spin me right ’round like a record. 

Gnarly dude, totally tubular!!!

Several doctors have explained that the MRI or Magnetic resonance imaging is the Holy Grail for patients with multiple sclerosis. Most doctors prescribe an MRI once yearly to search for new lesions showing the possible progression of MS. However, my doctor in Ohio, Dr. Connor, only prescribes an MRI when something significant occurs, as instructed by his mentor. That being the case, since my diagnosis twenty-two years ago, I have had fewer MRIs than the average MSer, with no new lesions in eighteen years.

My Floridian neurologist, Dr. Fein, wanted me to get an updated MRI to look for new lesions; my last MRI spot was nearly two decades ago. Unfortunately, Dr. Fein is just over an hour away, yet thankfully we can perform the MRI much closer to home. When scheduling the MRI, they told me it should take ninety minutes, but I should plan for two hours just in case. So I booked the magnetic photography session as soon as possible, four months, two weeks, and three days after the phone call. I kept reminding myself that time moves quickly and would be here before I knew it.

When I arrived on the day of my scans, volunteer Chuck quickly pushed me on what felt like a tour of the building. He wheeled me past the pharmacy, optometry, and even a few doors anonymously labeled with only room numbers. We ended our Australian Walkabout through the facilities as we arrived at a door marked Radiology. Chuck pushed me to the check-in counter, where I met Receptionist Audrey, and he abruptly left while I checked in and wheeled myself into the waiting room. “Hurry up and wait” is the military’s motto, yet this pleasant pause was pithy, and I then held for the next task.

After several minutes of sitting in the waiting room, Jim brought me to the camera control room. Unfortunately, I have four pieces of, for fun, let’s call them, metallic party flakes in my back, which require extra steps before an MRI. This additional work makes an x-ray mandatory before my first giant tube visit to verify the location of the metal confetti. Once they confirmed the exact positioning of the party favors, we could only then safely move on to the magnetic tube. Each MRI machine has different specifications for the allowances of metal, whether specific tattoos or welding residues.

As radiology techs Jim and Jenny helped me into the MRI, I explained my legs would minorly twitch and majorly jump. My plans were for them to lock or pin my legs down to help control the spastic movements ahead. Unfortunately, I do not think J and J took me seriously, and they left my legs precariously positioned freely to move wildly. I explained to them again, trying to preempt the dance scene that was sure to follow; I wanted to convince Jim and Jen, but had no success. This day will only go well if they heed my warning, but getting upset does nothing to change the outcome, so I stay relaxed, mellow, and go with the flow.

The first few minutes of the scan were uneventful as my legs were still, but I think it was “the calm before the storm.” It surprised the MRI twins when my legs began twitching and shaking, requiring a scan stoppage and a body readjustment. They started pinning my legs down to stop the movements by wrapping them in a blanket. For useless legs, they are shockingly powerful, and the blanket did not hold them in place. When Jim and Jen came in perplexed, my next suggestion was for them to stretch my legs to reduce their wiggle and jiggle. This attempt also did not last long at controlling my leg shifting, and we looked for another option to combat these flailing, fidgeting legs. It felt like an eternity while we continually stopped and started the scans as we struggled with my leg jerking.

After nearly two hours, we were halfway through the scans when Jim stopped the machine. He offered me the option to leave and return on another day to finish the second half of the scans. My reply was, “I’m game to stay if you are. I’m here now, so why not just keep going? Besides, it has to be better for you to get everything done at once.” So, with the continuous jumping of my legs, we resumed the second half of the scans, which took an additional ninety minutes. Jim explained how the Charleston dance-style leg movements shook my head and body, making the scans somewhat blurry.

Jim took me to the transportation pickup point when he surprisingly said, “Thank you,” with a smile I could hear, though he stood behind me. He explained how many people get furious when something takes an unexpectedly extended amount of time. I asked him, “If I yelled at you, would you have worked faster? I quickly answered myself and said no, but it had the potential to ruin your day.” “Had I raised my voice, could the machine scan faster? Again, answering myself, I said no, but it would have raised my blood pressure, and who needs that?” I shared how after my diagnosis, I do not know if I lost friends because of my attitude or if my personality was from losing friends. However, my thirties were a dark time for which I will never return, and I never want to revisit that attitude or mindset either. This knowledge means I stay Zen at all costs because life is too short.

Don’t Worry, Be Happy. Bobby McFerrin.

Tell me more, tell me more…

I used to feel shame and embarrassment when telling someone I had a caregiver, feeling like it made me weak and less than. Luckily, I realized that a good caregiver is priceless, and they have become a basic fact in my MS life, while several have even grown into genuine friends. So today, I will talk about some of the leading cast members in the movie called Scott’s Life. I unlock my front door when Brianna leaves after lunch and relock it at bedtime. I do this so that anyone can walk in saying hello, like Lenny and Squiggy in an episode of Laverne & Shirley. I like to be welcoming to everyone because no one was stopping by unexpectedly before my new Floridian life.

Brianna is my Personal Aide who assists me with everything and always has a smile and a positive attitude, even in an unpleasant situation. I often tell people she is a wonderful work wife who should wear a superwoman uniform because she is fantastic and a lifesaver. Brianna works weekdays for five hours, and upon her arrival, everything needs doing, yet when leaving, everything is complete. Constantly moving like a Mako shark, when she stops to rest, you can put a clock on it as within 90 seconds, she is up doing more. Brianna has undebatable, inexplicable, and unfathomable abilities, and her existence in my life is irreplaceable. She is the person I see the most in an average week, and if you think I am exaggerating excessively, then you do not understand. While yes, some are for dramatic effects, the truth is that the rest of my days are impossible without her twenty-five hours of work each week.

My next-door neighbor is Devin, who has cerebral palsy. Although his name sounds like “yachting with Devin and the other one percenters,” he has a genuinely down-to-earth personality. He is a great guy with CP and is funny; although he talks more slowly, his sluggish speech makes me think he is simply being thoughtful about what he is trying to say. These paced words are as opposed to those I know who have verbal diarrhea and do not care about getting their mess in others’ conversations. Devin would give you the shirt off his back, although because of his CP, he might not get his shirt off. Still, he would be willing. However, do not mistake his kindness for weakness; he would not hesitate to give a tongue-lashing to anyone who disrespects him or anyone with a disability. On the other hand, if you would rather talk behind his back, good luck; more people in this town know and love him than not, so speak at your own risk.

Then there is Devin’s mother, Dolly. This remarkable woman is always willing to help others whenever pleas persist, even to her detriment. Sometimes I have been in a pinch and needed help, so I called her and received aid quickly. I have always considered myself an old soul. For example, in my mid-teens, I could often converse with my mom’s friends many times better than those my age. Dolly and I get along and can chat extensively about any topic, issue, or concern. She and I do not solve any of the world’s problems, but we can have a decent conversation about them. Dolly will not think twice about verbally standing her ground in the vociferous defense of her son, Devin, or others with disabilities. Keep your comments to yourself because not only does everyone know and love Devin but Devin’s mom as well.

Alyssa is another person who helps me in the evenings and on the weekends, even though she is Devin’s caregiver. Strong as an ox, she has caught and picked me up, keeping me from falling, and gentle as a lamb, placed me back down. She is always sporting a smile, so having an enjoyable conversation with her is easy because Alyssa is also into music of all genres. So whether talking about Al Green or Meghan Trainor, our chummy chats make me think of caregiving less and friendship more.

My mom and stepdad are also highly beneficial and essential in my life. I live close to them, which is suitable for the convenience of visitation but disappointingly close. I do not want them to feel obligated to care for me, as I have lived independently since leaving High School nearly 30 years ago. It is important to me they can live their lives, and I live my life and occasionally interact for dinner or socialization. I love them very much, but this is their retirement, and they should enjoy every minute.

These five people are currently the most important and impactful in my life; each merit mentioning magnanimously. In Ohio, during the pandemic, I regularly went two weeks without seeing another human being making for a sad and lonely existence. However, that is far from the case in my new home state of Florida, as I now have very few days in a month when I see no one. I am happier in Florida, no matter the medical ailment issues, because friends and family make it manageable.

We are social creatures; people need people.

Lurking devil in the darkness…

Did you know that 988 is the phone number of the suicide and crisis hotline, so call or text 988 or chat at 988lifeline.org/chat. I recently learned that some of my readers struggle with issues and demons I fought with years ago. We all understand if individuals are battling beasts in the open, then others are raging wars alone in the shadows. I want you all to know that you are not alone on this battlefield, and I hope to say the correct words to help. I have been to the edge and pondered that prolific plunge, yet came back stronger and wiser, remaining on the green side of the grass. Friends and family make a difference, but it takes speaking up to enact change and recovery. For many avenues of help, you need to reach out and start the conversation.

I went through many years of a deep, dark depression that tried to encourage me to visit and leap from the ledge. This game between darkness and light stole my thirties, never to return them as time only progresses and never regresses. The onslaught occurred as the angel and devil on either shoulder taunted me ruthlessly. Although this atrocity was a lengthy war, the deadly battle did not reach the dark side’s desired conclusion. The following helped and continues to help me, and I hope others can learn from my time in perdition and reentry into society.

I have met people with families who are as useless as waterproof beach towels, and to them, I say learn your Facebook options. Do not be someone with two thousand Facebook friends you do not know or talk with most of them. Instead, go to your FB timeline and post that you are struggling and need to speak with someone, as many good people will talk. I am optimistic that you will receive a helpful response quickly, but do not stop there and request a private conversation with them.

You can join Facebook groups for whatever you can imagine and post looking for someone to talk with privately too. As a member of fifteen groups primarily focused on multiple sclerosis, I learned that 75% of MS patients are women. So three of the groups are men’s groups which get together twice weekly to video chat. If one gentleman is having a dreadfully difficult day, everyone will listen to that person, as many times, compassionate ears are all they need. With these Facebook clubs, camaraderie is crucial, and fellowship is fundamental, while everything is essential for the well-being of all involved.

To help with brain balance, you must overload your brain with enthusiastic endorphins. These positive peptides resemble opiates in the brain and raise the pain threshold. This action significantly and positively affects one’s mental agility, benefiting the overall outlook on life. Friendships are a great way to boost your endorphins to aid your cognitive modulation. For me, it started slowly, with one friend who reintroduced me to the art of socialization. He would visit my house once per week until he eventually enticed me to venture into public with offers of savory sustenance. Of course, I still felt shame, but my new buddy did not back down from the challenge of encouraging me to open up to the possibilities of life.

Laughing is another way to boost and induce more of the body’s positive mind manipulators. Eventually, I made more friends, which helped me remember how to laugh and enjoy life. Good friends can encourage your tear ducts to dump buckets of face-drenching tears as you pound on the table and cry out with laughter. These new compadres helped me make fun of this arguing devil and angel and see the humor in everything. This idea was helpful to me, as I could then forget about all of my sorrows and past while focusing on my new friends and positive life outlook.

Exercise and meditation can also help your mental wellness, as they did and continue to do for me. For those of us with MS, there can be a fine line between doing too much and not enough exercise. What is worse is that this line bounces like a caffeinated Chihuahua on a pogo stick, rarely staying in the same place. Meditation helped me to guide my mental monsters out of my brain while organizing my thoughts. The practice of this quiet rumination can be challenging, especially for those of us with busy brain syndrome. The key for both is to simply stay the course.

Here is the deal: I am not a therapist, nor do I play one on TV, but this is my opinion as a survivor of dreadful thoughts. I know that life’s challenges and struggles can cause a powerful depression that can envelop your existence. I understand that depression is different for everyone, and every person deals with it differently. However, I feel that one of the most critical factors in healing and recovery from depression is communication. Discuss your issues with family, talk with friends, or communicate with teachers, but most importantly, do not leave loved ones in the dark.

988 is the suicide and crisis hotline.

Come on and Rescue Me… The last episode…

Everything on me hurt, like my hand that I had been painfully smashing between my body and the hard surface floor for three hours. The fall twisted my head and neck, leaving my face smeared onto the floor while my cheekbone burned in pain from the slam and continuous pressure, and I could not move. The sound of my snapping neck during the fall echoed through my brain bucket, causing my imagination to run wild with dangerous possibilities. Finally, at six in the morning, it was time for call number four thousand one to plead for help from the only phone number my Alexa would call.

“Alexa, call Mom.” I felt like a man walking the desert dying of thirst, heading for a mirage in search of water, hoping my mom would actually pick up the phone. Suddenly, I had won the lottery because the phone did not go directly to voicemail but sounded like a ringing telephone on the other end. Finally, after two of the longest rings of my life, my mom picked up, and without explaining, I exclaimed in my muffled voice, “Mom, call 911; I am hurt badly and need help.” Quickly and without questions or verbalizing her plans, she responded okay, and the line abruptly disconnected.

After what felt like an hour, but in reality, it was closer to five minutes, I could hear my mom punching the code in and the motor grinding to open my deadbolt. She entered my office, where I was lying uncomfortably on the floor, explaining she could not call for help without the facts of the situation. Although she wanted to help me, I quickly clarified I should not move, as I heard a snap, crackle, or pop in my neck during the fall, and I did not want to risk further damage. I explained everything that had occurred, and without haste, my mom called that triple-digit rescue number to get me the help I so desperately needed.

When the firefighters arrived, and after a quick assessment, they cautiously lifted me from my prone position, placing me in my wheelchair. While seated, they took my vitals and continued to assess the damage, finding nothing, although they recommended I go to the ER. As we waited, I had two more vicious muscle spasms that would have launched me out of my chair and onto the floor if not for the firefighters’ quick reaction time. However, they were unconcerned and did not have me wear a neck brace or any other bracing for my neck or back. The ambulance finally arrived to whisk me away to a nicer, yet not much farther from the previous ER.

The ambulance took me to a standalone emergency room called Trailwinds ER, where many outstanding staff members expedited my examination. First, medical assistant Sandy placed me in a room, taking my vitals, insurance details, and other pertinent information. Next, nurse Janet received orders from doctor Bob to scan my neck and face to verify any damage. After two hours and two scans, Dr. Bob explained that there was no significant or permanent damage and that I could go home.

The staff at Trailwinds ER were done with me and my medical scans by 9:00 a.m. and released me to go home. Unfortunately, I had to wait for hospital transport to take me home, as I had no other means of transportation. With nothing to do, I stayed on the gurney for five hours while transport came from an hour away. When we arrived at my house, they put me in my manual wheelchair, and I was back to the starting point, no worse for wear.

So after my morning of torturous turmoil was all said and done, I purchased that emergency “save me” device the next day. Once the salesperson learned of my frightening four-hour tale, he overnighted the call button rescue kit at his cost directly to me. I tested the device, comically quoting the commercial, saying, “help me, I’ve fallen, and I can’t get up,” although there was no laughter on their end as it was really to amuse myself. The urgent rescue necklace worked well except for a few slight delays in response times, and they later told me of their understaffed dilemma. After that, however, I felt safer having this pressable pendant dangling around my neck as it eagerly waited to be called to active duty with a simple squeeze, quickly crying out to prove its worth.

After several months of getting stronger and achieving horizontal sleeping quarters, I felt secure again. The bruising on my chest had healed, and I had no violent muscle spasms or minor ones that caused a fall or near fall in quite a while. I felt safe no longer using the makeshift seat belt to secure me to my wheelchair and had no spasticity unstabilizing me in my seat. However, I began often having accidental button pushes calling for unneeded help, forcing me to explain too frequently about each false alarm. So this once-beneficial medical alert system was essential for several months and later became discouraging with all the false alarms, so I ended my contract.

A Vicious story, A Victorious ending.

Down, but not out…part 2…

Although light was bleeding through the window blinds, I could barely see the trash can and the empty floor area. Struggling to breathe air as the seat belt continued to crush my stomach caused panic to run through my brain, full of the worst-case scenarios. Then, finally, understanding that being unable to respire was terrible as the human body needed air for life to exist, I did not know if mine would last much longer. Quickly I ran through the sequence of events in my head about what I had done and could have done, but I urgently changed my thoughts to the task at hand: escape.

It was hard to catch my breath, like trying to grasp a Vaseline-coated eel, and I feared passing out in this perilous, pendulous position. I continued struggling to gain freedom from my swinging prison, it was like an elephant sat on my chest, and I could not take in air. I tried again to climb the drawers, hoping to lift enough to find the elusive air I so desperately needed, yet I was unsuccessful. My heart was pounding as I fiercely tried anything to escape what I thought would be an extremely odd final resting place or hanging place, as it were.

In the chaotic panic, I forgot that when I tied something onto my body, I always used a quick-release knot as emergencies could happen anytime. However, in the relatively dark space, I had to find the rope’s end, which was the quick-release part of the webbing. So I hung like a Christmas ornament floating on the tree, I flopped around like a fish out of water trying to escape this sling swing. I was looking for the correct part to pull and release me from this jungle gym jail, end this mess, and rescue this day and me.

I found an end piece to the belt and pulled with dwindling strength the longer I hung, trying to breathe. The more I tugged in this pendulum position, the more I realized I had the wrong end, and I quickly began the hunt for the other piece. As I dangled in my dark office, my arms got heavy and reaching became challenging, meaning I needed a rest. I did not feel I had the time, but I stopped and took several slow, deep breaths to allow my muscles a brief respite. It was a struggle for this much-needed rest, but successful as I quickly found the other end of this makeshift seat belt and yanked on it with newfound vigor.

After my brief rest, I had a newfound strength, though it took some effort to free me from the not-so-quick-release knot I tied. Dropping like a rock, I crashed and hit my neck when I heard something click, scaring me as the sound continually echoed in my head after my landing. I crashed with my chest down, face and neck twisted to the right, and I feared moving as I was sure my neck had snapped on the way down. With no strength to move, I was terrified of shifting my body, as I knew neck injuries could be quite severe. A little after 3:00 a.m. I was flat on the floor and could not move because of my strength and my neck with no phone; then I remembered my smart speaker.

Pain radiated through my body as the fall was easy, but the landing was brutal as I fell on hard surface flooring. I spoke as loudly and clearly as possible with my face pressed against the floor and said, “Alexa, call 911.” Without haste, she replied with a devastating response, telling me she could not call Emergency Services from that device. I hated to call anyone that early in the morning, but this was what they called an emergency, so I said, “Alexa, call mom.” Her phone did not even ring and immediately went to voicemail, so I continued calling and filled her voicemail until the mailbox was full. 

So from zero dark thirty until six in the morning, I continued to call my mom’s phone, begging for help. I tried to call other people, but my smart speaker would not allow me to call anyone else. I began contemplating life and thought I had lived a good life and put plenty of positivity in the world, so if this was the end, I was okay with it. That was a little dramatic, I know, but I would be lying if I did not say that was precisely how I felt as I waited, tired and in pain. Stay tuned till next week to hear the dramatic ending of this vicious story. 

Your imagination is so much worse than reality.

Dangling over the edge…

I began seeing occupational and physical therapists twice weekly, making my schedule very busy. The common factor they felt was essential for my life was building my strength, as I was weaker than when I was swimming nine hours weekly. We also worked on the crucial transfers from every surface that I usually shift from, as stable transitions are vital. I needed to return to the pool as the water eliminated gravity, a ferocious fighting force against my land exercise.

I had been battling severe spasms in my legs for several weeks at that point, and no one had a resolution solution. The occupational therapist had no explanation, although she thought my makeshift seat belt was a brilliant and creative idea. On the other hand, my physical therapist recommended I speak with my doctor about attaining more muscle relaxers. However, while trying to ease the violent spasticity in my legs, I was unwilling to request more medication as I feel pills should be a last resort.

I was dealing with these violent muscle spasms on what felt like an hourly basis, causing black and blue bruises across my chest. With every move, I tightened the seat belt to prepare for an uncontrollable muscle convulsion that could launch me onto the floor. Muscle spasms continually through my body into my office desk and kitchen table, causing a green-blue bruise across my chest. Finally, I got to where I could feel when the spasm might happen and could prepare myself not to tip out of my chair. These spasms were exhausting, whether slamming my chest into a table or nearly thrusting me out of my chair onto the floor.

Doing the exercises for physical and occupational therapy was beneficial but very exhausting and time-consuming. Moving to Florida was a tremendous ordeal as this transition would be for life, meaning, foremost, finding all new doctors. This Floridian transformation was massive because I had to find civilian and VA doctors and find and set up para-transit for all my transportation needs. Then, of course, I needed the doctor’s note for the para-transit, and I needed the para-transit to get the doctor’s note; what a conundrum I was in. I also needed to find a grocery store, travel trip times, and make many phone calls to find various essential businesses and other necessities around my new town.

I was looking forward to sleeping that night, no matter how restless I was, as exhaustion filled every inch of my body. When exhausted, my speech slurred as my tongue felt like it was twice its size and caused communication complications. My muscles also weakened, and my thinking slowed as fatigue caught and crushed me like stepping on a bug, making sleep an urgent priority. Finally, I was so tired and weak that I slowly rolled into my office, shut down my computer, and turned off the lights to get much-needed mind-rebooting slumber.

My spasticity slowed as I lay my head on the pillow on my desk, yet I could not get quite comfortable. This consideration led me to loosen my seatbelt slightly, as it was too snug after having it tightly around my waist all day. I wrongfully assumed this experimental webbed belt could hold me if I had a violent twitch or a vicious twerk. The spasms picked up again, and in one sudden hard convulsion, my leg spasm threw me over the side of my chair, being held halfway to the ground by the loose belt.

So at 3:00 a.m. I hung by the webbed belt, so I tried to use my hands to climb up the drawers like a ladder, to no avail. The seat belt and my body weight squeezed me, making breathing an uphill battle that caused me to panic. My eyes quickly scanned the relatively dark area around me, trying to view my options as terror filled my brain while contemplating worst-case scenarios. Pinned by my office desk, filing cabinet, and a wall, there was no allowance or means of escape from this prison from which I was dangling.

As they say, I was quite literally hanging by a thread, though in this case, it was webbing tied as a makeshift seat belt. So, I had many thoughts running through my head, uselessly trying to encourage me on ways to get back into my wheelchair completely. Struggling to breathe, I knew that air was free, but the effort was not, and my breathing became more laborious. Be sure to come back next week and learn how I changed my prickly predicament, what injuries I acquired, and what happened next.

Oh, how wrong I was to loosen the seat belt.

A goal of getting back…

After my rehab ranch resignation, my goal was to find normalcy, equilibrium, and balance in my new Floridian life. Unfortunately, in my newfound existence, I have yet to experience anything resembling physical peace and harmony, which I felt was in need. My life in Florida was wildly chaotic compared to what seemed like bumpy rainbows and butterflies in Ohio. However, my absolute happiness here trumps all the physical difficulties that had appeared since arriving in Florida.

The rehab facility had an accessible van, and Karen dropped me off and pushed me into my house as the ramp was still too steep. So, after my fifteen-day stay in the incredibly confusing medical nightmare called the hospital and rehab center, I arrived home. I wanted to return to normalcy, though I had experienced nothing in the realm of normal since coming to Florida. As Karen pushed me into my kitchen through the garage, I looked around, seeing everything I had only briefly experienced before the ER visit.

My office desk continued to be my uncomfortable sleeping space, which caused unexpected medical troubles. Sitting in a wheelchair twenty-four hours a day, seven days a week, is terrible for the human body in various ways. My legs were swelling like balloons at a kid’s birthday party, making me fearful of blood clots, which a doctor told me was the worst-case scenario. It was time for me to contemplate options for reducing the swelling in my legs and finding a better bed to rest my heavy head.

I am unsure what caused my muscles to weaken drastically, but I began periodically plummeting to the floor. These falls once again required me to call for that triple-digit rescue I dreaded and tried to avoid at all costs. My weakness was exhausting, making me fearfully hesitate and contemplate my every move. Again, I was overthinking every movement, making every transfer more risky and a fall more likely. I eliminated the idea of doing anything quickly wholly from my brain bucket, giving a new meaning to think slowly and move cautiously.

Another side effect of sitting in my wheelchair all day and night was that the muscle spasms in my legs became more frequent and violent. These vicious muscle jerks would thrust me forward painfully, slamming my chest into the table I was sitting at or even nearly throwing me out of my chair. The muscle relaxers my doctor prescribed were ineffective against these powerful leg convulsions. I found a strap that I used as a seat belt tying it off, making it unlikely that a muscle twitch, shift, or jerk would throw me from the chair again.

Thankfully, both physical and occupational therapy from the VA arrived a week after my return from my hospital horrors. First came an evaluation to test and find my abilities level, not wanting to push too hard or fast as that would be terrible for my MS. Next, they began asking about my overall goals for the sessions, and finally, pinpointing transfers of all types was my paramount priority. So we set a schedule for me to see PT and OT twice weekly for six weeks and then reevaluate.

To my readers, things may have appeared impossible, like the struggle was not worth it, as if there is no light at the end of the tunnel, but your thoughts are wrong. All tasks are a challenge, a big deal, and a significant struggle that I contend with daily, but these difficulties are manageable. You may not realize that for me, friends and family can take the wind out of the sails of this monster called MS. Camaraderie, togetherness and fellowship make the damage-causing MS beast impotent in its ability to ruin happiness and joy in my life. It does not matter where you are geographically, emotionally, or physically; strengthen and solidify your relationships. These individuals are your support system, which is essential as you will need them often for a healthy life. Family and friends are crucial weapons in fighting a chronic illness.

I needed things to get better, but life made things bitter.