Category: MS-Cellaneous

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.

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.

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.

This post is going to be fairly short. I have been continuing to allow all of life’s every day little responsibilities to stop me from posting regularly. I have been juggling too many projects at one time. When I lose one, I pick up another. Smh. This is more of an excuse than a reason. This blog is my baby. Created by me and I should be taking better care of it. I have so much to tell y’all, but it won’t be in this post. I will still definitely catch y’all up on everything. I just needed to share this information since this is only a couple of weeks away. I would love for whoever that can attend to join me.

The MS Walk will be held at the University of Toledo on Sunday, April 29, 2018 at 9 am. Check in and refreshments start at 8 am. You can go to this link(which it looks like you are going to have to copy and paste) and choose “Find Your Walk”. It will give you an option to find a team. My team name is “Ebony’s Avengers”. At this time you can join my team to participate in the walk or if you cannot participate, you can make a donation. Whether you are attending the walk or not please join my team. I want to know who wanted to support me but was unable to.

http://main.nationalmssociety.org/site/TR/Walk/OHAWalkEvents

If you are going to attend the walk, please send me a text (419-213-9391) with your name, just in case I don’t have your number. That way I will be looking for you. I will not start the walk until all of my team members are at the building. Therefore, if something comes up and you are unable to attend, please let me know.

Also, I am still not active on any social media sites. I didn’t delete my Facebook page so this will still show up, but I am not checking my post. The best ways to reach me is by phone at the number above or email, elsims27@yahoo.com. Or you can also make a comment in the box below. I try to make myself accessible for everyone. Thank you and hope to see you there.