Category: MS-Cellaneous

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Different Year, Same Disease

It is officially Multiple Sclerosis (MS) Awareness Month. This year I wanted to do something different. Usually I talk about my life with MS and give some random facts about the disease and medications. This year I reached out to some people and ask for them to tell their MS story. We will have a couple of people with MS, a daughter whose mom has MS and a wife whose husband has MS. Then a couple of my friends talking about what it is like to put up with me 😆. I will keep looking for other people and other viewpoints throughout this month. I want to highlight as many stories as I can.
I am so excited for the stories that will be featured on this blog. I have not read any of them in advance. I tried to read one yesterday and I couldn’t. I started crying. My first featured fighter is Samantha Vanderman. I was introduced to Sam by her friend who is in the Quote of the Day book club with me. I had reached out to 2 MS Facebook groups that I am a part of, asking ladies to share their story. I literally did not get a single response. I told my Monday Mastermind group this and Meagan came to the rescue. Like they say, “It is not what you know, but who you know.” Sam contacted me and the rest will be featured on this blog.
I accepted a challenge last year to do something that makes me uncomfortable. At that time, talking about MS was one of the things that made me uncomfortable. Not necessarily uncomfortable anymore, but still not a topic of discussion that I bring up too often. I’m saying this to say, I love it as a topic of discussion when it shines a light on others. When it brings awareness, when it educates and when it makes people feel seen and heard. This is not about me. It is about me sharing my platform. It is about me reaching out and pulling someone else up into the spotlight. I am shining bright and I will never dull my light again because I got work to do. I am about to light everybody’s candle and we are going to set this world on fire.
My heart is so full. I am overcome with love and gratitude. Y’all have no idea what this means to me. I didn’t think I was going to be so emotional about it. Damn, this means I am going to look ugly all month. Face all puffy and shit 😄. But it is a good thing. It is a great thing! And I am happy that you all are here to take this journey with each of us. This Multiple Sclerosis Awareness month is about to be lit 🔥. Stay tuned. Stay well and whole. Much love 🧡💚
P.S. It is also Women’s History Month. GIRL POWER 💪🏾♀️
“Women make up more than half of the world’s population and potential. So it is neither just nor practical for their voices, for our voices, to go unheard at the highest levels of decision-making.” —Meghan Markle

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Book 43, MS Awareness Fall Edition

*Quick update*
I reached my campaign goal on my crowdfunding page for my Alinker! I am so thankful to everyone who donated, shared my link and prayed for me. I couldn’t have done it without each and every one of you. Thank you so much. Now the team at Alinker will begin to create a bike just for me. It takes about 6 – 8 weeks before it is delivered. I will surely share pictures when it gets here and record my maiden voyage.

At 5:29 am on October 27, 1977, a little milk chocolate drop was born at Riverside Hospital in Toledo, Ohio. Twenty days past her original due date. According to her mom, she was dried out and hairy. Not cute at all. I believe I stayed in there the extra time to make sure I was born a Scorpio 🦂. Lol. It is my season and it has started off really well. Here it is, Book 43.

The morning of my birthday, I woke up early and prayed to God. I thanked Him for everything in my life up until this point. I thanked him for the blessings that are to come. I just talked to God. One thing I thought about as I talked was the decisions I have made with the free will He has allowed me to have. I have went left so many times on this path I’m not sure how many rights it will take me to get back on the original path. Or if at times along this journey I have cross corrected and I just need to make one more right. Just one more to get back on the correct path. Who knows?

When I was younger and I would see this picture of myself, I always felt like I was still in this moment. I had this weird feeling that I was dreaming my whole life out before I actually lived it. Honestly, I think I kinda stopped thinking this only about 8 – 10 years ago. Something in me still holds on to the idea a little bit. I think I am just so fascinated with the possibility of the idea. To this baby, my life is a quick nap in her carrier.

To this 43 year old woman, this is life in the matrix.

I love the saying, “We are not human beings having a spiritual experience. We are spiritual beings having a human experience” by Pierre Teilhard de Chardin. This saying allowed me to be so much more aware of what it means to live. I am experiencing life. And I get to decided if it will be a good experience or a bad one. I am determined to make my brief time here on this earth a good experience. How about you?

Though the majority of my goals were set on January 1st, I can say that a good portion of them have already been accomplished and that makes me happy. For once I am not feeling a lingering sadness at another year gone by. Wondering what have I done? And why I didn’t do more? I did some shit this year and I am proud of myself for it! I will continue to strive and reach as many of my other goals as possible before the end of the year and set new ones as I go. I won’t let MS or this pandemic stop me!

It was a great birthday. I spent time with my friends laughing, drinking and eating. Creating new memories to last a lifetime. I also received the best gift with the completion of my campaign. What a day! I look forward to the challenges and accomplishments this new book will bring. Book 42 may read more like a short story. Book 43 is going to be the size of our Britannica Encyclopedias from when I was a kid. Stay tuned. As always, be well and whole. Much love 🧡 💚

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MS-cellaneous Pt. 4, Fall Edition

For the whole month of October I am going to be talking about multiple sclerosis(MS) even though it is not MS Awareness month. March is MS Awareness month and I have some posts that you can check out if you want to read my MS story. If you go on my blog page at www.ebonyoneverything.com, there is a category on the right side or bottom of the page called MS-cellaneous. This category contains all my previous posts regarding Multiple Sclerosis. Someone great was born in October who just happens to have MS, me! I am speaking about MS because I was challenged by a group of ladies to do something that makes me feel uncomfortable. Talking about MS makes me feel uncomfortable. I don’t want to dwell on it. It is a part of my life just like work, sleep and the weather. These are topics we briefly discuss and move on. That is how I like to treat MS. Well, I accepted the challenge, so let’s talk.


On Friday, September 25th, I stuck a needle into my thigh muscle. The syringe contained my new MS medication called Avonex. Avonex is an interferon beta-1b medication that helps to inhibit inflammation that causes MS flare ups. Avonex may slow the progression of physical disability in people with multiple sclerosis. I had a nurse educator, Renee, there with me to coach me through the process. She came with sample placebo syringes for me to practice on a fake piece of flesh a few times before I did it on my actual flesh. It is so much easier stabbing fake meat versus real meat. Lol. Ok if you have read this blog at all, by now y’all should know I’m crazy. If you are new here, please read some previous blogs. I don’t take much to heart. Though an MS diagnosis is a pretty serious issue, I approach it with humor. How else do you get through a day?

Injection Day Prep


The start of Avonex had me injecting only 1/4 dose with an increase of an additional 1/4 dose until the fourth week when I use the recommended dosage. The shot is injected once a week. I usually like to administer this type of medication on Fridays. One of the side effects is flu-like symptoms. Friday injections allows me to recover over the weekend, if I was to experience any side effects. The last time I started an injection medication the side effects didn’t hit me until the middle of the week. I had to be wheel out of work in a wheelchair, which I do not use, and driven home by my coworkers. My body locked up and I couldn’t even walk or bend my legs. What a day that was. Took a couple of Aleve and was back in busy a few hours later. Everyone was freaked out though. Especially my boss. Couldn’t return to work without a doctor’s note. Lol. I don’t blame her.


This will be my fourth medication. I am hoping it will either be my last or I will be able to use it for at least a few years. I am starting to get discouraged with these medications. They all have scary side effect warnings and I just don’t know if they are even working. But the goal is to stay mobile. So I am willing to give it a try.


Since I have accepted the challenge that means I am available for any questions you may have in regards to multiple sclerosis. Whether it is general information about the disease or personal information about my life with the disease. You can leave your questions in the comment box below or email me at elsims27@yahoo.com. This stands true for the whole month of October. After that, I ain’t doing it. Lol. No, I will still be available. I did not really know what MS was until I got it, so I don’t expect anyone to know about it unless they have it or someone close to them has it. That is the way it goes with most diseases. So I can be your MS educator.


The weather is changing. It is getting cooler. People will be in the house more. The leaves will turn all those beautiful colors that represents my favorite season, fall. But we are still in the middle of a pandemic. So masks will still need to be wore and care taken with your health. Continue to be well and whole. Much love 🧡 💚 

 

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