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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It’s Levels To This, MS Awareness Fall Edition

Happy Halloween 🎃. This is the last day of October MS Awareness Month. I woke up this morning at 2:58 am, teeth chattering, whole body shaking and curled in the fetal position. Did I take my Aleve yesterday? Nope! So here I am experiencing flu like symptoms associated with my medication. As soon as I stretched out to get up to grab the Aleve I knew it was all bad. My right leg locked into place and my left leg had a cramp shooting up the back. This is one of those times I wished I lived with someone. Specifically a significant other. It was a small challenge getting off the toilet. Lol. I know, TMI 🙄. Anyway, lesson learned.
So it is levels to this multiple sclerosis shit. Lol. I am still on the lowest level, relapsing remitting. Or so I thought. Studies are now talking about Clinically Isolating Syndrome (CIS). It is identified as having symptoms of multiple sclerosis but cannot be confirmed through a MRI, yet. They may start a person on disease modifying medication to slow down or delay the progression into full blown MS. This information is new to me. I did know about the other types that I am going to discuss in this post. The next level is secondary progressive multiple sclerosis (SPMS). Then there is primary progressive multiple sclerosis (PPMS). And this level they rarely talk about any longer, progressive relapsing multiple sclerosis (PRMS)
Relapsing remitting MS is when a person will have an episode/relapse and the symptoms retreat/remit on their own or with the assistance of steroid medication. The majority of people, about 80%, who are diagnosed with MS start at this level.
The next level, secondary progressive MS, effects people who start with relapsing remitting MS. This level is determined by continued loss of function and abilities with little remittance. There may be times were it stabilizes and a person does well, but it continues to decline. A person with this form of MS may go from using a cane to a wheelchair.
Primary progressive MS is similar to secondary progressive but this is the level you start at. It is categorized by a steady decline of one’s health and functioning with no remittance. A person with this form of MS can have brief periods where the disease is stable or there is progression without any new lesions. This type of MS affects about 15% of people who diagnosed.
Then here is the obscure MS, progressive relapsing multiple sclerosis. Similar to primary progressive MS, this type steadily worsens from the onset. Symptom flare ups with or without remissions are present as well. As more research is done and types of MS are being reclassified, progressive relapsing MS is not being labeled as much. To me, it sounds just like primary progressive MS. That may be why they are getting rid of this label.
Well I hope that the information I have shared this month shined a little light on this growing disease. This is a link to the National MS Society that includes graphs of how each progress over time.
When I was diagnosed with MS I only knew of famous people that had it. Now I know about 6 people who either already had it or have been diagnosed over the last 10 years. Smh. I think I get so annoyed that more and more people are developing this disease and the researchers still don’t have a clue why. The information in regards to MS is stagnant. Really no new developments over the last 40 years. The only thing that has changed is a growing list of new medications.
If you know someone with MS or you have MS and would like to share your story, please email me at elsims27@yahoo.com. I want to share my platform. If you have any questions about MS after reading these posts, leave a comment below or you can message me at the email above. Be safe this Halloween night. And continue to be well and whole. Much love 🧡 💚

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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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