My MS diagnosing story, confusion of chaos…

last picOn a brisk October day of 2001, Doctor Cook called me into his office. I waited for him, and I sat on the padded exam table as my trepidation made me ponder the worst-case scenario. When the doctor came in, he pulled out and sat on a wheeled metal stool that squeaked as he rolled towards me. In a calm and clear voice, Dr. Cook said, Scott, you have Multiple Sclerosis. I could not have imagined what was to come as the next two years were hectic, chaotic, and had me drowning in confusion. I would soon learn life is ever-changing as this tumultuous filled pandemonium became my new normal.

Right away, the doctor put me on an intermuscular injectable interferon, an MS medication. Genuinely I am not too fond of needles, yet at that time, all MS medications were injectable, so my fear of needles did not matter. I began doing a lot of research on MS and found everyone had a cure for this autoimmune disease. Let me let you in on a well-known secret about MS; there is no cure for Multiple Sclerosis. However, I found many scammers who usually wanted you to buy their product. They would sell you special tonic water made from the tears of butterflies or some such nonsense. This pointless potion is guaranteed to deplete your savings account and make theirs swell like a deer tick.

pic 3 netThe internet and I had a close relationship for a long time after my diagnosis. I felt I needed to learn as much as possible about this maleficent monster preparing for the fight of my life. I spent hours that turned into days on the internet, trying to soak up MS knowledge like a sponge. On my quest, I quickly became educated about the shysters and charlatans that are out there ready to take all of your money. I was not about to give away any of my hard-earned coins to some low down swindler.

I felt like someone threw me in the deep end of the wave pool, and I did not know how to swim. Multiple sclerosis symptoms were smacking me around like waves from all sides faster than I could move. My eyesight went haywire, and I became legally blind, although I could sort of see causing constant consternation. I woke up one morning, and my legs were as unsteady as a newborn fawn forcing me at times to drag myself across the floor. Sometimes I had to military craw to the bathroom and somehow get myself up and onto the commode. At times while driving, my legs would be as useless as the ay in okay, forcing me to control my legs literally with my hands.

pic 4 bad eyeSince I worked as a draftsman, and vision of details was paramount to my job, those crazy symptoms forced me to stop working. I also had to stop driving as using my hands to physically grab my pant leg to move to the gas or brake pedal was unsafe. My body was simply going crazy, and I did not know what to do or if there was anything I could do. It seemed like every day, my body was fighting me and not letting me get up to defend myself brutally punching me blow after blow.

So I was now unemployed, which required me to live off of my seriously small savings. Once I moved out of my mom’s house after high school, I never again asked anyone for money. I now had to become creative in my accounting to make my bank account last as long as possible. I made sure my mortgage was on time, so I always had a roof over my head and a safe place to sleep. When it came to my utility bills, I paid one bill per month. January water bill only and February only electricity in March only gas in April it started over with my water bill.

Primarily I lived like the downtrodden wearing clothes that were old and made me look homeless. However, I had a few less worn clothes I could wear to my doctor’s appointments and not look excessively destitute. I kept my house at an uncomfortable temperature, to help keep my utility bills as low as possible. I had forty watt light bulbs in a few places around the house, meaning I walked around my house in near darkness most of the time. I am an Eagle Scout and a US Marine, so I was not afraid of camping in bad weather or with no heat or electricity. I did everything I could to keep from spending money needlessly.

last too smallBy this time, my weight had fallen below one hundred pounds. My doctors would always ask me if I was eating, I would say I ate three meals a day. Little did they know my portions were kept ridiculously small to keep my food bill exceptionally low. I would count twelve biscuits or one serving of spoon-sized frosted shredded wheat cereal with powdered milk for breakfast. I may have a drained can of corn with some Italian dressing for lunch. Then for my evening meal, I would possibly have one cup of mac-n-cheese always drinking water because my water bill was always paid. If I got hungry in between meals, I would have a couple of multigrain saltine crackers.

My new MS life was not going well…

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