“Her vivid, accessible voice is a strength of her book, and she puts a humorous spin on the debilitating disease to cope with its effects on her body…..
“A warm, unique memoir about coping with disease.” —-Kirkus Reviews kirkusreviews.com
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MS Madness! A “Giggle More, Cry Less” Story of Multiple Sclerosis is a memoir detailing the months before my diagnosis and the year after I discovered there was a reason for my craziness and perceived hypochondria.
See what Richard M.Cohen, the NY Times Best Selling author of Blindsided and Strong at the Broken Places has to say-
“MS Madness! A ‘Giggle More, Cry Less’ Story of Multiple Sclerosis combines defiance with humor, the secret weapon of the sick. Laughter has carried me a greater distance than conventional medicine ever will. In the end, attitudes drive well being” Richard M. Cohen
Learning to live with MS took many varied directions as I detail in the work. The excerpts (pre-edited) below include just some of those directions such as how I handled the injections, adjusting to new bureaucracy and trying to get healthy.
4.3 rating based on 35 ratings (all editions)
Author(s): Publisher: Sdp Publishing
Yvonne deSousa's diagnosis of relapsing-remitting multiple sclerosis came with an insightful declaration from a new doctor ("MS sucks") and a brother's helpful advice ("You could totally get one of those handicapped parking plates now"). What followed was a year of MS-adventures: "accidentally" kicking an officious male doctor in the crotch, becoming an undercover agent to pay for medication made from Chinese hamster ovary cells, discovering the amazing effects of legal speed, and battling her arch-nemesis, the dreaded food group: vegetables. Throughout her MS journey, Yvonne learned how to use humor to find acceptance in her diagnosis, and how to smile in the face of a debilitating chronic illness. MS Madness will make you laugh while learning the real story of what MS, a disease that affects 400,000 Americans daily, can do to a perfectly normal person. Life with multiple sclerosis can be daunting, but Yvonne shares her giggles at the bizarre world she has unwittingly entered and the new perspectives it has given her on life. MS Madness makes us realize that with a sense of humor, we can survive anything.
Excerpts from MS Madness!
From a chapter titled Shut Up My Head-
The thirty second auto-injector driven shot actually became an all day process. I would take the shot out of the fridge first thing in the morning. When it was time to do the shot at night I would take a pain reliever, wash my hands even if I had done so previously because the directions said you had to, and then hold it in my hand for what the nurse recommended as five minutes.
Since I would get bored in the five minutes, I would usually start playing Solitaire on the computer while I waited for it to reach the temperature of my hand. And, since I stink at Solitaire and would get adamant about winning, I would usually wind up holding the thing for twenty minutes while I tried to win.
Then I would check my medical notebook for where I should do the shot this time. After that it was time to hold a hot compress to the area for several minutes. Then the alcohol swab for thirty seconds. But now the area wasn’t warm anymore so I would do the compress again. Then I would stress about if the alcohol swab was now no longer useful and debate to myself if I should do it again. Then I would say move on and would start the process of holding the injector to the area and fighting with myself about pushing the button.
When I finally did, it was time for two minutes of massaging the area to disperse the medication. Next, the warm compress again. Then the clean up. Then I would realize I had actually done the shot an hour later than I had noted in my book and I would have to change that.
By then I was so exhausted that I would pass out relieved I didn’t have to do it again for a couple of days.
Many times I would hit the button and nothing would happen- no sting at all and I would think “wow, that one was easy” only to realize that in my exhaustion and spaciness I hadn’t uncapped the needle and would have to start the process all over again. Apparently for some insane reason the drug doesn’t work if you don’t uncap the needle.
(Note- the above is what happens when you take an anal OCD driven freak and give her an MS diagnosis.)
The following excerpt takes place just after I have walked away from my job of seven years. This chapter is titled Hiding with My Duck Friends–
It felt rather decadent that Monday morning, surreal almost. It was after nine when I woke up and immediately I felt guilty. I hadn’t slept through the alarm, I just hadn’t bothered to set it. I didn’t have to go to work today. But I vowed I would use this new found, stress-free, free time wisely. I had decisions to decide, phone calls to call, and thoughts to be thought. My new job would be sorting out my life and figuring out where to go from here.
Except that it was hot, really hot. After the beautiful Friday when I quit and seemed to walk across the bay, the weather turned into a hot, humid, cloudy one minute, sunny the next mess. Due to an unfortunate predicament with some badly installed window sills I was not able to set up a real air conditioner in the little house. Friends had taken pity on me and brought over a little portable AC that worked great, but only in one room. The room I chose was the bedroom.
I was not missing the chaos I knew was going on in the office, but the overindulgent AC Dr. T used at maximum setting causing us all to wear sweaters was longed for. No, I would work this out myself. I had always been miserable in the humidity and that was just another reason why I thought I was slowly turning into an annoying old lady at the ripe age of 40. I was miserable when it was too hot and couldn’t function when it was too cold. But it turns out being affected by extreme temperatures is just another symptom of MS. Another thing I can blame on the disease, what a relief!
So I moved into my bedroom for the summer. I brought in my cell phone, laptop, pens, notebooks, jugs of water as I was supposed to be keeping hydrated according to all the MS books, and got comfortable. Then I got up ten times to pee in the first two hours and took the water jugs out of my bedroom cave. I started making calls.
Question #1- How do I get COBRA insurance? I called one office who told me to call another who told me she didn’t know why I was told to call her and I should call the other office back who told me to call someone else who finally told me to call a particular extension whose machine told me she was on vacation and to call this other number where the woman finally told me what to do about COBRA.
Except she told me really, really fast. I was using my pillow as a desk and trying to write down what she said and I had only managed to retain “copy your insurance card.”
I asked her to repeat the instructions. She did, even faster than she had the first time. The second time I retained the word “fax”. I asked her again. She was annoyed now and had a bit of a tude.
“Excuse me ma’am, the reason I stopped working is that I seem to have a hard time processing information and am slower at understanding directions. I am trying to write all this down so I get it right and don’t have to bother you again. So please speak slowly so I will be able to do what you are telling me.”
Very kindly and very slowly she apologized and genuinely seemed sympathetic. Then she speed through the instructions again. After relaying them to me ten times I felt I finally understood what needed to be done. But as she had annoyed me at this point with her habit of speaking faster at the more detailed parts of the instructions I asked her to repeat them an additional two times, just to be sure I really understood. Then I took a nap.
From a chapter titled Pumpkin Fudge-
After my self-exiled, cool, dark bedroom summer refuge, I emerged anew. There was still paperwork to sort out and calls to keep making but it was autumn now. The miserable humidity was diminishing. If fatigue was my problem, well I had rested all summer and maybe caught up on sleep a bit. The last two and half months were mostly a blur and I was ready to get my life back. I would get myself healthy and become a productive member of society.
First up, exercise. The Wii and I had stopped communicating. It refused to forgive me for not even doing the simple balance games over the summer and I had given up trying to win back its affections. It was not interested in the chocolate I proffered so I consumed it myself. I had shared the Wii with Lexi during her visit but as she was only three, she didn’t understand the system and the Wii grew even more resentful with me. It didn’t appreciate that I was passing it off to a child who didn’t perceive its greatness. I did not know how to send a computer in my TV flowers and, as I had so many other things to think about, I moved on.
Fall was my favorite time of year and the weather was beautiful- I would go walking. There was a route around my neighborhood that I had calculated to be about three miles. When I calculated it again, it had shrunk to just under two. How did that happen? Did the neighborhood shrink or did my eager to get fit mind and body increase the calculated memory? But it didn’t matter, it was walking nonetheless.
I set out and at the end of my road turned left to follow my path. As I did so I walked directly into a woman walking a horse and a goat. No, that is not the start of a joke. The horse wasn’t that big and with my left turn we were eye to eye with only inches separating us. I was taken aback but didn’t know if the horse understood “excuse me” so I said instead,
“aren’t you beautiful?”
And apparently that was the wrong thing to say. The woman walking the horse said abruptly
“and this is her goat!”
I guess it was rude not to acknowledge the goat but my cognitively limited brain wasn’t fast anymore. All I came up with in response was,
“oh, hi goat.”
The trio passed and went their way and I walked backwards for several steps trying to make sure my encounter wasn’t just part of my MS confusion, and that the goat wasn’t too offended by my rudeness.
I had seen rampant rabbits and large deer in my edge of nature backyard. I had also observed a neighborhood fox on the nearby road and had been warned about coyotes at dusk so my next walking venture was the main street of my hometown, Provincetown. The wildlife there was just as unusual as a horse and a goat on a leash together but relatively safer than coyotes.
I walked along the main drag right by a candy store that was offering free fudge samples. I had worked in the Cape Cod candy industry as a teen and had long since lost my taste for fudge and taffy. But I was now very attracted to the word free and I was walking after all. What could a little sample hurt as I would walk it off? The sample was pumpkin and it was good. It was a nice fall flavor that actually got in a bit of fruit.
Some people actually thought of pumpkin as a vegetable too so I got in a serving of veggies while I was walking as well. This was great- I could do this healthy stuff. But the sickening sweet feeling that overtook me as I walked back to my car made me realize that maybe this wasn’t the best way.
As the commercial strip would start to settle down after the season, there would be lots of other freebies offered and I couldn’t rationalize all of them as partially healthy. Plus, I had wasted a bit of expensive gas to make the thirty minute trip so this really wasn’t an answer.
I walked the beach several times and braved another foray around my neighborhood. On that trip I found a walking stick the perfect size just for me. It was a tree branch lying on the side of the road that seemed to insist ‘you need me’. I picked it up and began walking with it, feeling a little like Moses in the 10 Commandments. What I looked like was probably an idiot trying to look like Moses in the 10 Commandments but I was walking and now I had protection against any dangerous critters.
Plus, I had researched goat etiquette and would be better prepared if I encountered my four legged friends again.