Why I Feel Lucky
I want to write a little disclaimer before I start this—I understand that everyone’s MS is different. Everyone experiences different symptoms and feelings; some people have much more aggressive MS than I do and experience much more pain and struggles on a daily basis than I do. I realize how fortunate I am right now. I want to emphasize that I have no intentions of discounting the feelings of those who suffer much more than I do from MS or any disease; the following post is just about the way that I cope with MS and the way it has changed my life.
An adjustment period
When I was diagnosed with MS, I went through several stages, very similar to the stages one experiences when grieving. For a long time I was angry that I had MS, and I didn’t want to face it. As a 23 year-old, I genuinely viewed it as a death sentence. I had just moved to Richmond, VA, started a new job, and was beginning my “adult life” when everything came to a crashing halt. I decided to move back home after a few months of struggling with my “new normal.” I was extremely exhausted, wearing an eye patch to help with my double vision, and dealing with intense migraines. I just wanted to come home where I felt comfortable. So, with my mind made up with what I thought would be best for my health, I waved goodbye to my short lived “adult life” and moved back into my childhood room. My first year living with MS was extremely difficult. I was drinking with my friends a lot, working at a restaurant we all worked at together, and not properly taking care of my health. I used partying as my escape because when I was with my friends and drinking, I didn’t have to face the reality of my diagnosis. I didn’t have any difficulties walking, wasn’t experiencing numbing, tingling, pain, bladder/bowel problems, and despite my migraines and occasional vision problems, I was fine. I didn’t see how fortunate I was to only be experiencing these symptoms -- instead, I harped on my double vision, migraines, and what might happen in the future. I now realize I was so lucky, I still am lucky, that my MS isn’t as aggressive as a lot of others who are coping with it, and that I can still live a pretty normal life with a few minor adjustments.
I slowly started to realize how fortunate I am after about a year-year and a half, as I got more involved in the MS community and began forming friendships with others that have MS. I realized that instead of feeling sorry for myself and angry, I should feel lucky that for now, I am pretty okay. This reality hit hard last year.
On April 6, 2016, my sister’s fiancé was admitted to the hospital with the following symptoms: paleness, feeling faint, dizzy, out of breath, and exhausted. He had a blood transfusion almost immediately after arrival at the hospital. His platelets were extremely low. Later that night after a lot of poking and prodding and several lab tests, the doctors told us that he had Leukemia. This news came as a total shock to all of us. I was just drinking beers with him, my sister, and my boyfriend on my parent’s deck a few days beforehand. We were joking around and making summer plans, and now he has Leukemia. We weren’t sure what kind it was until his bone marrow aspiration, which showed Acute Myeloid Leukemia, the exact type we had been hoping he wouldn’t have. Now, growing up in a medical family -- my dad being a Neurologist, my mom a nurse, and my sister a dietician -- we all knew how serious his diagnosis was.
The next several months he spent in Charlottesville at the University of Virginia hospital, an hour and a half from our home in Fredericksburg, VA. He went through intense Chemotherapy, sometimes up to 24 hours per day for seven days at a time. After his first round of Chemo, he still had AML in his blood, and the blast cells in his marrow were too high for a stem cell transplant. Andy then had another round of chemo in hopes of entering remission so they could perform the transplant. He was doing well after this round, his numbers were all looking good for a few days, and hopeful, they scheduled the transplant for the beginning of November. He went to Johns Hopkins in Baltimore to have some tests done for the transplant and learned that his blast cells were too high again. They told him not only this, but that his heart was getting weaker and weaker from all of the chemo. He had a decision to make—more chemo despite the dangerous risks with his heart, with the hope that he would go into remission or avoid the risk. Despite all of the risks, Andy decided to move forward with the transplant. The chemo was successful, and he was able to have the stem cell transplant right before Thanksgiving. He got extremely sick in the following weeks, lost a significant amount of weight, and even had a terrible allergic reaction to a medication he had been administered. After three rounds of chemo, a stem cell transplant, and calling hospitals his home for 10 months, he is finally starting to feel better. He came home the first weekend of February and my family couldn't be happier.
I'd be lying if I said it didn't make me feel guilty
Andy has been fighting this awful disease for almost a year now, and I would be lying if I said it didn’t make me feel guilty sometimes. I remember when I was diagnosed with MS I would cry in my bed and just scream in my head, “WHY ME!?” and now I find myself doing the same “WHY HIM!?” I think about the suffering he has gone through with this disease, and the way I dealt with mine and almost feel ashamed. I should have seen my early diagnosis as a blessing, but instead I looked at it as a curse. Watching how strong Andy has been fighting for his life has given me strength in fighting my MS. I find myself being more diligent with my medicine and taking overall better care of myself. I view my disease in a new light. I feel lucky—lucky for a few reasons. Lucky that my auto immune disease, for now, is under control. Lucky that taking Tecfidera is working, and despite the uncomfortable body flushing, at the end of the day it’s just a pill I have to take twice a day (nothing compared to Chemo or Tysabri). Lucky that I have such an amazing future brother in law, lucky that my sister is going to marry one of the strongest men I know, and lucky that my nephew is going to have a superhero as a step-dad. I think the way you’re able to look at things and deal with hardships is something that truly defines you as a person. I really believe I’ve become a stronger and better person since my diagnosis and continue to learn and grow every day. From now on, when I am going through a difficult time, and things seem impossible, I’m going to try and look at all of the positive things in my life. Rather than concentrating on and getting caught up in the negative, focusing on all the good that surrounds me. This will help me to keep my eye on the light at the end of the tunnel, which I truly believe exists.
How many specialists did you see before finding "The One"?