Me Pt. 3, the MS story

This is the last day of Multiple Sclerosis (MS) Awareness month. I realized that I have not talked about how I knew that I had MS. So here is my story from before I was officially diagnosed to present day.
Driving home from Columbus on a Sunday, I had just taken my manicure licensing exam(I passed). All of a sudden, there was a blur in the center of my right eye. It was so weird. I rubbed my eye, still there. I pulled my glasses off and cleaned them, still there. I ran the wipers across my windshield. Still there. I went to the eye doctor. “There is something wrong with my eye!” His response, “I don’t see anything. It may just be a change in vision due to your age“, (I was 32). That was some bullshit. So that blur right in the center of my eye was still there and it stayed that way for about a month and a half. Until one day it was gone. Ok I don’t know what the hell that was but thank God it’s gone. Fast forward to about 2 months later, my left eye is doing the same exact thing. I went from “I don’t know what the hell it is” to “oh something is really wrong, this is not normal“.
With easy access to the majority of information at your fingertips, I went online searching. My search words were simply “blurred vision”. This yielded the usual conditions, cataracts and glaucoma. I knew I didn’t have either of those conditions. Also, diabetes (nope), stroke (no), migraines (don’t get those) and a brain tumor (GOD I hope not). I was reading about one of these conditions on Wikipedia and I scrolled down to the bottom. At the bottom it had links to other conditions that may cause blurred vision. At the bottom of this particular page I seen multiple sclerosis. Ok, what the hell is that? With that one click onto those two words, my life changed. Words that I had heard before due to Richard Pryor and Montel Williams, but still was not truly aware of what it was.
At the top of the Wikipedia page was a list of symptoms associated with multiple sclerosis. Out of the 10 or so symptoms listed, I had a good 7 of them. Things that I had brushed off as not important, as symptoms related to my other health condition (I have hypothyroidism) and other things that I thought may have just been due to stress, listed here at the top of the page. This weird tremor in my leg is unusual, but it is not bothering me so whatever. I am so fricking tired I keep falling asleep at my desk. Fatigue is one of the top symptoms of hypothyroidism so maybe my levels are really off and I just need to start some medication. Lhermitte’s sign, an electrical sensation that runs down my back when I bend my neck. Ok, I work an office job and my neck and shoulders are tight. This feeling is just from relieving some of that tension from stretching. I had an answer or an excuse to write off all the symptoms I was experiencing. Multiple Sclerosis did not and would not have ever crossed my mind.
I had zero intentions of telling anyone what I had discovered. One, I just read a bunch of information on Wikipedia, I think I should talk to a doctor first. At this point, it would be my own self-diagnosis. Two, why make people worry? If the end result was not MS, but maybe Lyme Disease (has similar symptoms but is curable), I got everybody worked up for no reason. Well, God had different plans. It was the very next day after my discovery. Before I even had the time to process the information and come to terms with the possibility of MS, I received a phone call. It was my mother. She had a dream that I fell down and could not walk. My stepfather and her had to carry me. Then they put me in a wheelchair. Creepy as hell right!?!? Yep. Ok, one other health condition, hypertension. She believed that I could have had a stroke in the dream and that is why I was unable to walk. She goes on to lecture me about the how-to’s of handling a stroke. I allowed her to finish and then I shared my information with her. When I say this was the last person I had intentions of telling. We know how our parents are and she is the straight up typical parent when it comes to me. Worry, pray, worry and pray some more.
So from this point on, I involved the doctors. MRI, lots of blood labs to rule out other possibilities (that’s how I knew Lyme Disease had similar symptoms) and the spinal tap. To the Cleveland Clinic with 2 of my best supporters, Selena and Monica, and I am diagnosed with Relapsing Remitting Multiple Sclerosis. The crazy thing is I have never had a relapse that involved blurred vision in either of my eyes again. Now I do get the floating spots but that’s it. My life with an MS diagnosis is definitely different. But I am thankful because I know that it could be worse. I believe in the power of prayer and I believe because of prayers that I am doing so well. I am grateful for everyone’s prayers, my mom’s, my friends, strangers from the soup kitchen, strangers in general, coworkers and other people who I know.
Even though Multiple Sclerosis Awareness is observed in the month of March, the National MS Society will be holding the walk in Toledo on Sunday, May 19th at the Huntington Center (new location). I am sure they keep pushing it back due to bad weather. I don’t think I have attended a walk where the weather was decent yet. The walk starts at 8 am which I know is pretty early. If you would like to participate, you can sign up at walkms.org/signup. You would look for the Toledo, OH walk and my team name is Ebony’s Avengers. I welcome anyone who would like to join my team. If you have any questions, please email at elsims27@yahoo.com. Until the next post, be well and whole.

Missing Myelin Pt. 2

As I stated in Missing Myelin Part 1, it is Multiple Sclerosis (MS) Awareness Month. Since I don’t talk about my diagnosis much I decided to share a little more. Selma Blair revealed her MS diagnosis in October 2018. We didn’t hear anymore about it until recently when she did an interview. When I say that hit me hard. I cried when I watched the interview. Not just a moist eye, tears streamed down my face unchecked. I was upset and angry for Selma in regards to it taking 6-7 years to even diagnosis her. I was understanding of her relief at finally knowing what was causing her body to betray her. I was also, empathetic to her struggles with functioning in a body that is so different from the one she previously knew. I cried some more when I seen her on the red carpet, shakily walking even with a cane. Touched by the photographers not taking pictures when she had a vulnerable moment and needed to gather herself. It was a lot for me. It was also empowering. I am one of those people who will use a cane as needed, kinda. I probably spend more time walking around looking drunk than ensuring my own safety. I am getting better at using the walking stick, but would not allow it to show up in pictures. Because of Selma, I proudly rocked my walking stick in a picture in the Bahamas.

My walking stick is not pretty, but it is functional. #pjawedding2019

Even though Selma Blair’s story touched my heart, I am still MS prejudice. Most people who have MS probably are so don’t judge me. What I mean by this is I would not like to hang around with people whose Multiple Sclerosis is more advanced than I am at this time. I don’t mind meeting people affected by MS, but multiple interactions would be hard on me. The reason is I would let their MS journey influence my thinking about my own. With an illness that is so unpredictable it is easy to let your thoughts run wild. And I also have an overactive mind and imagination. I know my weaknesses. I am not doing great but I’m not terrible either. And where I am right now may be where I will be in 10, 20, or 30 years. I don’t know. No one knows. So why spend time worried about ending up in someone else’s story? I will not. I will walk my own path.

There are things that I truly miss that I am unable to enjoy any longer. Dancing, any kind. I love music and I have a little rhythm so dancing is expected. I still dance a little, but I feel awkward when I do it. The more complicated dances like hustles and ballroom are not feasible. Going for long walks to clear my mind and look at nature. Hell, just walking without having to think about the movement of lifting your foot up high enough not to trip. And then putting it down so that my foot doesn’t drag. As I started to crochet for the first time in months, I realized that I better do it more. I would hate to be years from now having issues with using my hands and unable to crochet. Wishing I would have made more works of art. Gave away more blankets. Blessed more people with helping them to learn to crochet. This will be the third year that I make a blanket for someone affected by MS. And I want to continue this tradition for as long as I can. I have started to notice the decreased feeling in my fingertips. The weakness when I write for any length of time. This makes me sad, but more resolved to do what I love.

I will not give up the goal of living every day to the best of my ability for that particular day. They are never the same. I am never the same. This sharing is not to seek sympathy and I sure in the hell don’t want anyone’s pity. I just want to share my story in case it helps someone else. It lays me bare and I am still not good with being vulnerable. I know people see me and are curious, but of course don’t want to be rude or intrusive. I don’t mind genuine curiosity, so please feel free to ask. I do mind “poor baby”, “that is terrible” and any form of fake sympathy. I get it. I don’t expect people to understand, but I do expect people to be respectful. I know I can’t relate to someone’s battle with cancer or any other condition not affecting me. I believe that everyone has their own burden to carry in life. Mines just happens to be visible. Lol. No matter what burden you carry in life, make it your mission to be well and whole.

Missing Myelin Pt. 1

March is Multiple Sclerosis (MS) Awareness Month. So I thought it would only be fair to really get into what MS is and how it is to live with MS. I don’t really talk about my life with MS much because I don’t want or need people to pity me. I’m okay. At the same time, if someone is unaware of what MS is or how it affects the body, I am more than willing to speak about it. If you are interested in my journey, I will share it. I can honestly say that I had no clue of what MS really was until I became affected by it. Most people are not aware of a specific condition until they are or someone they know and love are affected by it. There really is a lot I have to say about this topic that this will be a two-part post.

To start, I will give the basics of what MS is and how one can be changed by this condition. Multiple Sclerosis is an autoimmune disorder where your body attacks and eats away the protective covering over your nerves called myelin. Once the myelin is depleted, you will lose the connection between your nerves and your brain. This missed connection will make that area of the body unusable. The areas most commonly affected are the eyes, feet, legs, arms and hands. MS is usually found through a MRI where it represents itself as scars/lesions on the brain or spine. This is where the name comes from. Multiple scars/lesions = multiple sclerosis. If the doctor feels the MRI is inconclusive another test can be performed called a spinal tap. This requires them to stick a long needle in your back and draw out fluids. My back is tingling thinking about this right now. If the test comes back abnormal, you have MS. I have had both an MRI and a spinal tap. The spinal tap solidified my diagnosis along with a second opinion from the Mellen Center at the Cleveland Clinic. Now what?

Well, at this point I started to research my condition. What medications are available, what resources are out there for people with MS, in what ways I can be affected. I reached out to the MS Society first. The lady I spoke with over the phone seemed helpful, but I found it to be untrue. The only thing I received was Momentum, the MS magazine. I never received any other literature or communication from them. One time I even ordered a free workout video that was said to have exercises beneficial for people affected by multiple sclerosis. It never came. I have never reached out to any other MS association/service/agency again. Maybe when I am in dire need I will try again.

The first medication I tried was called Gilenya and I took it faithfully for about a year. It was all bad. The medication lowered my immune system so much that I started to get really bad infections, MRSA infections. This was not how I expected treatment to go. Baby bottle antibiotics and lancing the boils was not how I wanted to spend the rest of my life. Bye Gilenya! I am really bad with medication. I dislike it tremendously. At this point, I felt that I would just take my chances with MS. I could see the deterioration, but I also knew that there is no guarantee that a medication would assist me either. The reality is MS medication is supposed to delay the effects of multiple sclerosis on your body. They are not even sure if that is true since every person’s journey with MS is different.

The next medication I tried was Plegridy. It is a shot that I would inject every 2 weeks. It was an auto injector so I didn’t actually have to look at a needle or use a syringe. Once again the side effects were a little unpleasant, but not as bad as Gilenya. It gave me flu-like symptoms and it took a week for the side effects to wear off. By the time I was back to normal, it was time for another injection. Once again, I had to make the decision whether to continue on the medication, stop taking it or try another one. I am currently not on any medication, but I would be willing to try another one at some point. Probably a shot, not a pill.

Let’s be real, there will not be a cure for MS and if there is one created, it will not be affordable or widely available. These pharmaceutical companies and insurance companies are making too much money off these medications. We are stuck taking these medications that can have side effects worse than the actual disorder. Some medications can give you seizures, cancer, an incurable brain disease, kidney problems, etc. Uhh…no thanks. These are the more severe side effects but the minor ones are still annoying. This is the life of most people diagnosed with a chronic disorder or disease. Rather it is cancer, lupus, lou gehrig’s disease (ALS), thyroid condition and so many more. We are totally dependent on an outdated medical system. The “breakthroughs” that have been discovered in regards to MS is nothing different from what they knew 10, 20, 30 years ago. They have no idea what causes it. The experts say it is not hereditary, but people from the same family will be affected. Come on now, let’s make some headway in finding truly groundbreaking information and treatment that works.

Part 2 of Missing Myelin will be available soon. In the meantime, be well and whole.