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Posted on September 11 2014
So for me, part of this fear of being dependent is probably “normal.” But there is a large part that is a direct result of having MS. I have a really tough time asking for help and yet, I have to ask for it more than most people do. I know everyone has something that they need assistance with, trust me I don’t think I’m that unique. But when I look back over my life, I realize that I have needed to rely on others a lot.
The flip side to this coin, is that we all want someone who will take care of us one day. We want to find a partner who will see us through thick and thin. When you think about it, it’s sort of ironic. I want to be as independent as possible the rest of my life, and yet, I want to find someone who will take care of me in case I am ever dependent...even if the dependence only lasts a few days. Living with MS brings such an intense sense of uncertainty that I have no idea what tomorrow will hold. That is a truth that applies to each and every one of us, but those of us with a chronic illness like MS, actually see that as their reality while many of us prefer to ignore it.
This fear truly lives deep within me. I might be writing this diligently but I’m crying on the other side of the screen. Sure, I’ve already processed this feeling and have come to a very calm understanding of it. Yet, I’m still emotional writing this because just acknowledging the existence of this raw emotion that has taken hold with my diagnosis is, well, painful.
First of all, multiple sclerosis is a chronic, often disabling disease that attacks the central nervous system, which is made up of the brain, spinal cord, and optic nerves. Dr. Oz uses an electrical cable to explain how the disease attacks a patient's central nervous system. "Imagine that the cable is a nerve going down to your hand," he says. "They have cables around them—insulation that protects you so the electricity can go where it's supposed to go. With multiple sclerosis, your immune system attacks that lining, that insulation, and it makes little cracks. As soon as that illness gets a little more aggressive, it actually takes whole chunks of that insulation away." As the nerves become more exposed, Dr. Oz says patients experience electrical, firing pain throughout their bodies. "The nerves send back messages because they're not getting the right kind of input from the brain," he says. Symptoms may be mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision. The progress, severity, and specific symptoms of MS are unpredictable and vary from one person to another. People have spent their entire life up until the point of diagnosis imagining their life in a certain way, they have to interpret how they're going to let go of that picture and how they see themselves, and fit that new information into the sense of who they are. It's a grieving process, and you can't move ahead on how you're going to live with MS
Getting diagnosed with MS was actually a very long drawn out process. One day, I started experiencing horrible headaches and I was slowly losing my eye sight in my right eye. When I finally decided to go to the doctor, they sent me straight to ER for an emergency CT of the brain followed by 2 different eye doctor appointments. At first, they thought my retina was detaching or possibly shingles in my eye. After about 2 weeks of seeing the eye doctor daily and having absolutely no vision left in my eye they finally diagnosed me with MS, at the age of 24. At that time, I didn’t even know how to feel because really I didn’t know what MS was. And he wasn’t a neurologist so he couldn’t really explain it to me either; he just referred me on to someone else. He scheduled me an appointment with a neurologist the next day and confirmed the diagnosis and she explained it very well to me, but all I could think was why? Why me? I was scared out of my mind with the thought of having a disability, possibly never getting my eye sight back, not knowing what I can or can’t do in life and I wasn’t thrilled about giving myself injections 3 times a week. I was a phlebotomist so needles don’t bother me at all until it came to actually doing it on myself. I was without any vision in my right eye for about 2 months. I went through the injections for a little over a year. Never once did it ever get easier and it felt like a huge disappointment because I was still having just as many outbreaks. My MRI’s just kept getting worse and worse. Stress is a huge key to controlling your MS but how can you not stress when you feel like your failing? Nothing was working. My doctor talked me into considering changing medicine. Since my disease is so progressive, that only left him with one other drug, Tysabri, to try and the side effects were so terrifying! Severe brain damage, liver damage, paralysis, and death. This drug is a once a month IV infusion that only a specialty facility can administer. Tysabri is a low dose form of chemotherapy. It is supposed to reduce relapse rates by 70%+. MS drugs lower your immune system tremendously. Even the slightest cold, I seem to catch every sickness I’m around. I was so glad to give up injecting myself but the chance of the side effects happening to me and the thought that this drug has been taken off the market 2-3 times made it an extremely hard decision. I quit taking my injections in April 2012. Most MS patients are extremely intolerable to heat, but mine is the complete opposite. It seems I only suffer in the winter when it’s cold out. I would have bet someone $100 that I did not have MS this past summer. I had convinced myself that I had been misdiagnosed. Little did I know, I just went into remission. I went all summer with no medication and I had never felt better. As soon as summer was over, I had an outbreak about once a month. Every time I have an outbreak I have to go on 2 different kinds of steroids to get over it. Even the steroids bring horrible side effects. You really sort of take for granted everything you can do. When I have an outbreak, I usually lose use of my legs, hands, and my vision. Some days I feel completely helpless. I finally decided to refer myself to Mayo Clinic to get a second opinion and hoping they might know a different drug I could try. Two days after Christmas, my husband and I packed up and took the 9 hour snowy drive to Rochester, Minnesota. I was scared and excited. On my first appointment, after doing a 2 hour head to toe assessment, the doctor brought in another specialist so they could get 2 different opinions. The doctors thought because I was so young and my disease it so progressive we don’t have time to mess around. They did a spinal tap and more blood work to triple check everything. The results came back, 110% completely MS. The medicine that I had been putting off for almost an entire year is my only answer. Being on this medicine will not ever cure my MS, it won’t completely keep me from having outbreaks, and won’t get rid of all the scar tissue that’s already on my brain. Faith never fails and I refuse to let MS run my life.
This whole time, I’ve developed a really bad attitude about my condition, but I’m slowly realizing that there is nothing at all I can do to change it. I pray that one day they do find a cure for MS, but until then I have to learn to live with it. Everyday life is a struggle for me, but it will only make me stronger. I have such an amazing and supportive husband that goes way above and beyond to make my life easier, better, and happier. My husband and I are experiencing a pretty strong dose of baby fever. Having a baby is extremely hard for MS patients. I’ve done a lot of research on this and getting pregnant doesn’t sound like it should be a problem, but because of the MS, it will be almost impossible to carry full term. This then, makes me feel like I’m failing in my duties as a wife. I may not ever be able to fulfill my husband’s dreams let alone, mine. But why? Why can all other people get knocked up and have tons of children when we may not even have 1. My sister, for example, can purposely get pregnant just to drop out of school when Drew and I have both finished school and are married! Sometimes I can’t help but wonder if I would have MS right now if maybe I would have gotten knocked up at 20.
As of right now, I’ve had 3 doses of Tysabri. 4 weeks seems to fly by! My first experience with Mercy McCune Brooks wasn’t very pleasant at all so I really dreaded it for a while but my last 2 infusions have been much better.
I have been following a “Living with Multiple Sclerosis” page on facebook and a lot of people have been commenting about Tysabri lately and there seems to be more positive comments about the drug than negative. The only discouraging things I’ve found so far is most of these people are a lot older than me, not that that really matters. They have also posted a new oral drug that’s coming out. I hope it’s safe to say, I’m on the road to recovery and in 2 years I will be able to discontinue Tysabri for an oral pill.
I have to accept the fact that I have it, but that doesn't mean I have to give in to it.