MS-Cellaneous – Page 8 – Ebony on Everything

May 20, 2019July 6, 2020

MS Walk Toledo 2019

Here we are once again acknowledging the disease called Multiple Sclerosis and supporting our family and friends affected by its unpredictableness and life changing ability. I have participated in the MS Walk in some fashion since 2013. The first year I really didn’t know what to expect so I came in as a volunteer. I also had not shared with many people what I knew to be Multiple Sclerosis, even though I was not officially diagnosed. That would come a year later. The next few years I did actually walk. The last 2 years I struggled to walk the full mile due to the route being unfriendly to people with MS. This year the location was changed but I am not sure that it was for the better. I didn’t walk this year. My legs were tired and I just didn’t feel like walking fucking slow as a turtle. Ugh…it gets frustrating sometimes. Also, I had just a little more trim to finish on the blanket that I have now adopted as my yearly tradition.

This year I was determined to give a blanket to a man. The first 2 years I was able to bless two lovely women with beautiful blankets. I was lead to these ladies by God and I am glad that I followed through. Here they are for anyone new to this blog.

My mom had actually been working on blankets to give to veterans that utilizes wheelchairs. I did make one blanket for the veterans but I dislike putting them together so I can’t show you the finished product at this point. Will share once my mom connects the squares 😁😁😁. Those blankets gave me an idea. I decided to give a blanket to an individual with MS who uses a wheelchair. Since the blanket would be smaller than my standard blanket, I decided to make two of them. Pretty ambitious for me. I am lazy when I crochet. I do it at my own pace and I am easily distracted when I am working on a project.

Now I picked out my colors and was pretty solid on them. My mom however had an issue with one of my colors. She is such a hater 😂😂😂. We had intense discussions about yarn. Can you believe it?!?!? Yarn!!! 🤦🏾‍♀️🤦🏾‍♀️🤦🏾‍♀️ Here was the options.

Green is mine. The orange is hers. I am obviously team Green.

Anyways I submitted a poll to six people and she got the majority vote so we went with it. And since she wanted it so bad, I told her she had to crochet it. She did the orange parts of the blanket and I did the variegated.

I have to admit, once it was all put together, I actually liked it. Not sure if I would have liked my pick better though. This lovely blanket was given to a young lady by the name of Mandy. She had a great support system with her that day. They were loving on her and friendly and welcoming. They asked for me or my friend Bridgette to take a picture for them. Bridgette took the pic. I debated on which blanket to give her because her team colors and even her shoelaces were lime green. The blanket with lime green would have matched Mandy better. But I was determined to give a man a blanket that year. Bridgette and I figured as sweet as they were she probably wouldn’t care if it didn’t match her team colors. The rest of my team made it back just in time to catch her team before they disbursed. We all had an emotional moment presenting that blanket.

Mandy was totally cool and I am happy that God lead me to present her with that blanket. She even gifted me with a bracelet.

Now to find a man using a wheelchair. I had seen a gentleman earlier when I was working on finishing the blanket. Here is the finished product.

I figured I would find him later when my team had came back. Not exactly. Most people didn’t even come back in the building. They were still hanging around outside. I was getting a little nervous that I would not be able to find a man for the blanket I had made specifically for him. As we stood outside there was a team that was at the finish line taking pictures. I had found my guy. Now I am not sure if it was the original man that I seen but he was the man that was getting this blanket. I walked over to him and introduced myself and told him that he was my guy 😂😂😂. Yeah I used those exact words. I shared with him that I had MS and my goal was to give a man with MS who utilized a wheelchair a blanket. Bob was definitely touched by my words and his gift. I was ecstatic that I had found another great person to give a blanket. His family shared that Bob always complains of being cold and that the blanket was perfect for him. Yes God knows what He is doing.

I am undecided about the new walk location but I do love the walk. It is great meeting new people and making connections. I love the support I get from my friends and family who walk and even the ones who are unable. I know that they would be here if they could. For some it was just not a good time because it conflicted with very important issues going on in their life. My prayers to you mom. Also the date of the walk was pushed back and it made it difficult for some people to attend. It was actually held on my friend Selena’s birthday. Happy Birthday broad!!!! I also love to see the team shirts and so many people who show up for and support people affected by MS. I am not sure if our loved ones know how much it means to us to have people in our corner. It makes me feel overwhelmed with love. This is some pretty sappy shit coming from me. But I am so serious. I see the love and support every day not just for the walk. Thank you my loves 🥰🥰🥰.

Morgan, Roy, Sheron, me and Monica
Not shown one young man taking the pic and another that wanted no part of being in the picture.

For those who were unable to make the MS walk this year, I hope that the date is a little more convenient next year. I really want to do it up big. New team shirts, banners, a marching band. Lol. Just kidding 😂😂😂. I definitely want to have a bigger team and new shirts. I will start planning a little sooner and keep people updated with information regularly. This terrible disease will not get me down or take away my joyful spirit. I am determined to be me. I am determined to be well and whole, in my mind and my spirit even if my body is not. I want you all to be well and whole too. Love you!!

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March 31, 2019September 20, 2020

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.

March 23, 2019October 8, 2020

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.