Category: MS-Cellaneous

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My First MS Support Group

So on Thursday, December 19, 2019, I attended my first MS support group. I did not realize I was even attending a support group. I went to the meeting to support my friend, Kimberly, who was the guest speaker at the meeting. Honestly, I didn’t know the topic of the presentation or anything. Lol. You support your friends and that is all I know. The awesome thing was the information was relevant and the presentation was well done. I give it an A.

This support group is called Missing Myelins. I thought that was interesting because the posts I uploaded in March, MS Awareness Month, was titled Missing Myelin Part 1 and Part 2. The group was a diverse mix of people that actually were pretty upbeat. The majority of the people had been diagnosed within the last 2 – 3 years. There was only about 3 people besides myself who had been aware of the disease as long as I have or longer. There was a lady by the name of Kimesha with a lively spirit and obsessed with food like me. She has a beautiful voice and sang us out with Silent Night. It was fabulous. There was a Nurse Practitioner who said the best thing that happened to her this week was a man telling her she was cute. She was very pretty and I am surprised she doesn’t get told that more often. There was a guy by the name of Tommie that was 6′ 7″ tall with a wooden walking stick made by Brazos Walking sticks that his mom brought him. I looked them up online. They aren’t cheap but they look well worth it. I will definitely invest in one in the near future.

I met some interesting and incredible people who may have been diagnosed with Multiple Sclerosis but were not down and out. I met a lovely silver fox who was struggling with her diagnosis because she had suffered for so long with a misdiagnosis as well. Also an amazing lady who was diagnosed with MS as well as Parkinson’s and utilized a motorized scooter. These wonderful people gathered themselves together after a long day at work or just getting out of the house even when they were having a terrible day physically and mentally. I commend them for their strength and perseverance. For coming together to encourage each other. For realizing their need to be supported and to support others.

The topic of the meeting was “Multiple Sclerosis: Understanding and Coping with Depression and Fatigue”. I have definitely experienced fatigue with MS. And there have been days when lassitude set in as well. New word! Lassitude was described as “My tired is tired!” That no matter how well you sleep or if you haven’t even done anything at all, you are still tired. Now that sucks! Thank God I don’t experience that often. My favorite quote of the presentation was “If You’re Going Through Hell…Keep Going” by Winston Churchill. And I believe that is what a good portion of people with Multiple Sclerosis does. Or any other serious, life altering illness or disease. And anyone who is living. Lol.

Now I haven’t experienced depression. I have been sad and I have had days where I was down, but nothing that lingered. I cannot say that I wouldn’t benefit from talking to a licensed professional. But that would be in regards to life in general. Lol. I am thankful that MS is not affecting my mental health at this point. From the presentation I found out that there is not really any licensed professionals that specializes in treating patients with MS in Lucas County and surrounding areas. So I am happy that Kimberly has made it her purpose to serve people affected by Multiple Sclerosis and their caregivers/families. It is needed. And she is the perfect person being as she lives daily with a person affected by MS, her husband.

So I don’t think I will become a regular at the support group but I wouldn’t mind stopping in from time to time. It is great to know there is a group available that is not all doom and gloom. Holly, the group leader, was warm and welcoming. And I like the group name 😂😂😂. I know I’m silly. I am glad that I attended the presentation and the group. Definitely a positive moment. Be well and whole. Love you all.

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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.

MS Walk Toledo 2017
MS Walk Toledo 2018

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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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.