What the MS???

para 1One of the most significant issues with multiple sclerosis is the many hidden symptoms leading to accusatory statements. The invisibility of these MS issues means that others do not see, perceive, or believe that they even exist. The two primarily posed comments are you don’t look sick; you must be fine or, but you look so good, you are not ill. These statements drive MSers insane and can cause us to stand our ground vociferously.

I have been a member and even a facilitator of several local MS support groups and am currently in a few Facebook MS groups. In this blog, I will attempt to explain the experiences of those dealing with these conundra causing invisible symptoms. I am in a wheelchair, so rarely does anyone question the unseen complications that impact my life. However, I feel that I must help defend my MS brothers and sisters by spreading my blog to the ill-informed masses. I hope that using my words can do justice for those warriors that were unjustly stricken with multiple sclerosis.

para 3In our multiple sclerosis family, we deal with an excess of dilemmas and even daunting doubt from others. On a good MS day, it is merely a beastly condition that continually takes from every aspect of our daily lives. Our courage is challenged while our pride is persecuted as we struggle through our every movement. We endeavor setbacks every time that we attempt to take one step forward, not backing down from the fight for our existence. Most people will never know or understand the debilitating issues that we warriors go through to simply get out of bed in the morning. Yet with every strike against us, we persevere like a baseball star returning every psycho spitball thrown by the diabolical devil himself.

We no longer have the luxury of taking any part of our lives for granted and must consciously consider every minor task. Simply drinking a glass of water for many MSers requires extra steps that, if not followed, could choke and kill us. Like a pitcher watching the hand signals of the catcher, we must follow the extensive steps for every essential task. We have a deep-seated fear of dinner out with friends or family as we wonder will this be the night that ends in an ambulance trip. These constant concerns continually capture our consciousness because the risk is dire if not followed.

para 5It is no wonder why melancholy and depression fill the manipulative and maleficent world of MS. We have deeply drenched fear of every movement and how our multiple sclerosis riddled bodies will react to our locomotion. Will the next treacherous step that we take be the one that lands us in a motorized machine that changes our lives forever? We think about the terrors while we are awake and maybe get a reprieve when we slumber. This respite from our day-mares is only if the sandman does not brutally bombard us with cruel memories of what we will never be. So much depression forces us to cry as the rivers of fears turn into oceans of tears drowning out our thoughts of survival.

para 7There is also a symptom that has a perfectly pleasant name but has devastatingly diabolical impacts on the MSers body. MS Hug is the name of this symptom, and physical terror is its game. It was explained like this: a python that has wrapped itself around you and squeezes enough that every lifesaving breath is excruciatingly exhausting. These breathing complications are not only challenging, but they can last for weeks and up to a year at a time. It was explained from someone else as five bands wrapped around the torso tightened like a vice grip allowing only slight pain-filled breathing.

Pain is a common theme across these invisible indicators that severely impact my multiple sclerosis family. The pain that some MS patients go through is so torturous that they need a properly positioned pain patch. They might even require some other form of continual pain soothing medication that might barely dull the suffering. In life, most people know the mundane pain of a headache, stubbing your toe, or maybe a few cases of a broken arm. However, the pain of those with multiple sclerosis goes on forever, yet we have learned to smile through it like the warriors that we are.

para 9Most people have been tired from a long day at work or exhausted from a viciously vigorous workout at the gym. Now from a MSers perspective, we sometimes get dreadfully debilitated and need a respite from merely taking a shower. Needing a major rest after a minor task is as common as the sun rising in the east. This fatigue impacts parts of our lives that we do not always expect like it makes us ridiculously weak. I have been so tired that my speech gets significantly slurry and hard to comprehend. This complication causes me to need to close my eyes and rest as soon as it is physically advantageous; otherwise, it can get excessively worse.

final paraI hope that I have done justice in explaining some of the invisible symptoms that plague multiple sclerosis patients. My MS brothers and sisters courageously combat these unseeable issues like the battle-tested warriors that we are. I believe these hidden afflictions would take down most mere mortals, yet we stand with our heads held high like superheroes in a movie. Like Tub Thumping said in their song: I get knocked down, but I get up again; you’re never going to keep me down.

They cannot stop us superhero warriors.

Tiny tubular tunnel…

va medI recently received my very first MRI at the local Veterans Administration medical facility. Do not misunderstand me; I have had plenty of MRI’s in the past. However, these scans were all completed at civilian hospitals. For that matter, my entire repertoire of scans like CAT scans, MRI’S, CT scans, PET scans, and X-rays were all completed at private medical facilities.

This experience has taught me the differences between civilian and veteran facilities. Of course, I would not ever criticize the veteran services and their fantastic family of faculty. To be hired at the Veteran’s medical hospitals, you must have two years of real proficiency in the medical field.

All private medical facilities are typically up to date on all of the equipment and keep up with technology. However, that is not the case when it comes to the Veterans Administration. The VA does not have the money that is required to update the equipment regularly like the civilian hospitals.

hos bedI rolled up next to the bed that they wanted me in so that I could mount this mattressed mechanism. The nurse looked at me and asked if I needed help transferring to the bed. Keep in mind that the bed was about a foot taller than my chair height, making a self-transfer an impossible imposition. I knew that this was not the time for comedy conviction, so I bit my tongue and counted to ten. I looked at the bed and then back to her and asked if the bed could go a lot lower. She said no and said that she thought that it was too tall for me and looked puzzled. Let me say that there were four nurses involved in this seemingly simple scene of getting me from my wheelchair to the gurney.

At this point, one nurse came in and looked at me then back at the bed with a look of consternation on his face. I am sure this is what I would look like if I were trying to do trigonometry. They explained to me that at a private facility, several nurses would pick me up and place me in the bed with no hesitation. However, at the VA medical center, they are not allowed to pick a patient up physically.

sara stedyOne nurse gets a standing device and the aid of a different nurse to assist me in the best way that they could. They carefully rolled the wheels of this device around my wheelchair and separated the seat pieces of this mechanism. With the position of this unit open and it pulled as close as possible while lifting one person per arm they simultaneously lifted. As I held onto the handle, these nurses lifted me and then closed the seating brackets under me so that my derriere had a resting place. Now resting comfortably, they wheel me around to the bed where they then reversed the procedures until I was sitting on the gurney.

The next step to having an MRI done is to wheel the bed and me up to the massive magnetic machine. First, they put earplugs in my ears as well as extra pieces of foam to help muffle them from the crashing commotion. They gave me a turkey baster sized ball that was connected with some wires to squeeze if any emergencies arose.

Every MRI that I have had done has been in a cylindrical tunnel that is exceptionally capacious. These cavernous compartments have always been spacious enough that you could fit a couple of people in at one time. They always ask me if I am claustrophobic, but to me, it does not feel like a tightly confined place. These midsized echo chambers feel more expansive then closed off phobia, causing areas.

small mriNow is when the phrase tight fit becomes a massive understatement in this story. As the nurse slid me into this cramped cave, I could tell that there was a limited amount of space even for my small frame. This machine is used for the masses they say, but I do not know how much of a massive person would fit in these dinky digs.

moneyThe continually updated equipment allows a private hospital to show that as the evolution of technology marches forward, so do they. The Veterans Administration does not have the massive budget of these independent institutions. The VA sends all of the men and women who do not fit into these mini machines to non-veteran facilities costing the VA big bucks. I am perfectly puzzled at why with all of the money that they spend sending vets elsewhere why they do not buy a larger scanner.

When it comes to spending, think smarter, not harder.