I didn’t have to wait long for my MS to rear its ugly head again. Once all those steroids were out of my system my body was unprotected in its fight against MS; since my insurance was taking FOREVER to approve my DMD. All I could do was sit and wait by the phone… (Yea right!) I called my insurance company every single day to follow up, complain, yell, beg, plead, etc. My DMD was finally approved six weeks after I submitted my initial paperwork. Six weeks! This was my first experience with a “specialty medication”; means that it had to come from a certain pharmacy and be delivered to your house instead of just your typical run through the CVS pharmacy drive thru. Instead of a prescription, I was sent home from the doctor that day with the instructions to “keep stress as low as possible” until I started my new medication; which would happen “as soon as they heard something” from my insurance and the drug company. This “keep stress low” was something I had been told before but really in this case it was ridiculous advice; dealing with the insurance company to actually obtain my medication was the MOST stressful part of that second relapse! So stressful that to this day, I fully blame the insurance company for causing my third relapse. Or maybe it was the fact that my MS had decided it wanted just one more hooray inside my body before it went dormant for awhile. My MS sure seemed to love excitement!
Every year I celebrate the Fourth of July holiday at my family’s lake house in Indiana. Especially given the insanity of the previous few months, I was really looking forward to getting out of town and enjoying some relaxing time with my family. Whenever I’m at the Lake all of my troubles seem lighter, smaller. The more trivial ones even cease to exist; if only just for the weekend. Not Multiple Sclerosis. I carry my MS with me every day; wherever I go. There is no vacation from MS. But I had been feeling pretty good since being pumped full of steroids in the hospital and so I even opted to head up there a few days early with my little sister. Who knows how long this “feeling pretty good” would last? I was determined to make the best of it while I could.
My sister and I arrived without incident and went to bed early in anticipation of a busy weekend ahead. The next morning I woke up still feeling pretty damn good, but with one slight change…the fingertips on my left hand were numb. Nothing else was wrong or felt at all strange in my body so again I felt more annoyed and frustrated than anything. I was not going to let MS ruin my holiday weekend. After a few hours, it hadn’t gone away, nor gotten any worse, and so I felt the need to mention this new sensation to my little sister. The concerned look on her face and her immediate response of “should we call your doctor?!?!” made me quickly realize that I needed to remain calm not only for myself but for her too.
After insisting that any call to my neurologist would be a waste of time, as it was the Friday of 4th of July weekend and I was several hours away from the MS Center in Chicago. Plus, it was just the pads of my finger tips that were feeling this way! No big deal. Compared to what I had been through in the past few months this was nothing I couldn’t handle. So I carried on celebrating the holiday weekend with my family, without any more mention of my strange new MS symptoms and thankfully with all the festivities going on everyone else seemed to forget about them too.
By the third day of our trip all the fingers in my left hand were numb from the knuckle down. It was the exact same feeling that started in my fingertips but ever so slowly it was spreading. At that point, I started trying to estimate how quickly the numbness would spread and whether I could finish out the holiday weekend without having to leave early. While I was sure I was experiencing the start of my third relapse, I wasn’t exactly sure what was going to happen next. MS is a fickle bitch like that. There is no definite way to predict a person’s symptoms or progression. You could have MS for twenty years and still get surprised by new symptoms one day. I have a very exciting and active form of the disease, let me tell you! Ultimately, this third relapse’s excitement would end in the loss of function of my left hand for about two months. Oh, and did I mention that I’m left handed? Yup! Really MS?!?!
For the next several days the numbness didn’t seem to get any worse. It didn’t seem to get any better either, but as long as it was holding steady I was not booking myself a ticket to the ER. Uh…I loathe the ER. So I waited. And each day I took note of the size of the numb area. I waited until one day I went to bed numb only from the knuckles down and woke up with my entire left hand numb. Damnit! Now I was forced to call my neurologist. This wasn’t my first rodeo. As expected she told me she couldn’t do anything without seeing me first…so come on down to the ER Waiting Room!!!!! Double damnit!!
At this point I was so sick and tired of multiple sclerosis; these relapses, the hospital, my insurance company, just about everything MS had brought into my life. I had all these hoops that I had to jump through and I had only been diagnosed for a few months! I really began to wonder how I was going to deal with this disease for the rest of my life. Forever! But as quickly as I started having those thoughts, I forced myself to push them aside. With MS, if you stay in those “what if” thoughts too long you will drown. You must keep moving, literally and figuratively, and take things one day at a time. So I packed up my E.R. Survival Kit and I headed back to my home away from home; the hospital.
After another crazy long stay in the ER waiting room I finally got into a room to begin the initial poking and prodding that had to be done before the ER doctor could determine that what was going on was “likely neurological and due to my MS” and so he “paged the neuro team and they’ll be down shortly.” Thanks Captain Obvious!!! I had told the registration nurse that along with every single other medical professional I’ve seen in this hospital since her…but alas, sometimes people just don’t listen to the patient. The main problem here I think was that it didn’t LOOK like there was anything wrong with me. At that point I still had normal movement and dexterity in my left hand, I just couldn’t feel it. No matter how many times that doctor poked me with a safety pin my nerves were just not having any of it!
To make things even more fun my primary neurologist was still out of town on holiday weekend (which really was fine because I didn’t like her much anyways) but that meant it took even longer for things to get done. What felt like a million hours and tests later I was told that yes, I was having a relapse, but that it was “not that bad.” I was given the option to treat it with oral steroids or IV steroids. Apparently I became a doctor while I wasn’t looking. Well, fine then, if it was totally up to Dr. Julie then that was an easy decision. Oral steroids I could take at home but I had to be admitted to the hospital for several days to get the IV steroids. I was not prepared for another hospital stay; physically or mentally. The IV steroids are much stronger than the oral form, but the doctor said it “wasn’t that bad.” I quickly decided to take the oral medication prescription and head home before anyone changed their minds. The nurse encouraged me to come back right away if my symptoms worsened. If you read my medical record it states that “patient responded yea I’ve done this once or twice before. I should know in the next 24-48 hours whether I need the IV. I’ll keep you posted.”
On the outside, while still unable to feel my left hand, I appeared cool, calm, and collected when I left the hospital that day. On the inside, I was cursing everything under the sun and questioning what I possibly could have done to deserve being stuck in this mess. But I also knew that compared to my previous two relapses, so far this one was in fact pretty minor. For now. Just looking at me you would have no clue something was wrong. No one could tell I was sick unless I told them. And why worry people when there was nothing they could do to help me? I decided I would take the steroid pills to settle this MS flare down, my DMD was finally scheduled to be delivered the following week; and I had high hopes that medicine would be the game changer! I was SO DONE with MS. Armed with not one but TWO medications now to help my body fight the MS I was sure to get some control over my disease.
Multiple Sclerosis, or any invisible illness for that matter, is a double edged sword. On the one hand, I get frustrated when people can’t physically see my disease because it often causes them to lack understanding or underestimate the daily challenges I face. But on the other hand, I am grateful that others can’t see the damage inside my body or the pain that I struggle with because I don’t want others to feel sorry for me. I don’t want my MS to take away from anyone else’s joy in life. I bet a lot of Warriors understand where I’m coming from. Everyday we get up and face two battles; one against our own bodies and another against a society that is incredibly lacking in awareness and understanding of invisible and chronic illnesses.
Not all disabilities are visible; on my good days mine isn’t. If you happen to pass by me in the grocery store you would have no idea I have MS. Heck, you might even think I was healthy and physically fit; walking around in my gym shoes and yoga pants pushing my cart down the aisles. Good! Most days, that is exactly what I’m hoping for. I’m hoping that you don’t realize that I’m using the cart as a walking aide because I know I’ll be struggling if the shopping takes more than 45 minutes, or if I have to stand waiting in line for too long at the check out. I hope you don’t see as I load my groceries into my car as fast as I possibly can because I parked in a handicap spot to save my legs and it’s only a matter of time until some ignorant person comments on how “those spots are reserved for people with actual disabilities, Miss!” Yes, some ignorant lady once stopped me from loading my groceries to shout this at me!
You never know what is going on inside a person’s body or mind, so be kind. MS taught me this lesson in a way I never understood before. Growing up you learn “not to judge a book by its cover” and to “walk a mile in someone else’s shoes”. You learn empathy. I most certainly did; or so I thought I did. But then I was diagnosed with MS and it opened my eyes to a different way of living. Through each of the obstacles MS has thrown at me, I’ve learned more about myself and life than I ever imagined.
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