Month: October 2020

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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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How To Treat Someone With Multiple Sclerosis

This is actually the post I was going to put up last Sunday, but God had other plans. Plans that changed my life and made me incredibly happy! If you haven’t already, please read my last post, “Who’s Next? I’m Next”. And if you have a few bucks to spare I could use your help. I am getting closer every day, but I haven’t reached my goal yet. Here is my link if you are able to donate.

https://app.cocopay.co/ebony.sims

This post came from God while I was clear minded in the shower. I had been struggling to put words into sentences that make sense. So I know this post isn’t from me.

I have always been an independent person. Some of my independence was by choice and some by necessity. So when I was diagnosed with Multiple Sclerosis(MS) I was determined to continue to do as much for myself as I could. Even though, there are things I struggle with now, I do the best I can. According to my friends, “I be doing too much.” Lol. One thing MS has taught me is to accept help. If someone ask to carry something for me, even if I can do it, I let them. I look at that as saving energy for later. But be aware that everyone is not at this stage. Hell, I am just getting here.

Multiple Sclerosis is not a reason to pity a person, assume that they are incapable of things or assume that they are capable because they do not look “sick”. I believe that everyone has something to deal with in life. And unless a person tells us, we don’t know what it is. We don’t go around pitying people for presumed issues. So let’s be careful to not pity people for known issues. When I was first diagnosed I told as few people as possible because I did not want to be pitied. MS is not a death sentence. It just has the possibility of altering one’s life plan. Or it can help a person to set about creating a more interesting life plan. So many ways to look at this and I am always finding the positive ones.

Now, MS can be a confidence killer. Especially when people remember you a certain way and now you are no longer that person. Yes, your friend used to walk 2 miles with you. Uh…not now. Don’t say, “You can do it.” No, she can’t but I am sure she wish she could. And believe me she is feeling some kinda way about the fact that she can’t. This is the time to alter one’s life plan. Allow her to offer other activities she is capable of doing and do them with her. One side effect of MS is loneliness. We still want to be included dammit! Everyone eats, I like to eat. Lol

MS isn’t always visible. It’s symptoms are so varied. Even when someone is walking normal and they look like nothing is wrong, they could have fatigue. Or brain fog. Or blurred vision. Or aching hands (just heard this from a friend). And the list goes on and on. Yes, I parked in the handicap space and I am walking fine. But when I leave the store it is going to be a whole different story. It took a while for me to “look sick”. And a person “looking sick” should not be the definition of sick. This is a huge misconception among people with autoimmune diseases that take a while to show but the person is feeling it the whole time.

These are my thoughts in regards to how I want to be treated. I am sure that others with MS may share the same thoughts, but they will definitely have some of their own. If there is someone in your life with MS or any other debilitating disease or disorder, ask them how best to honor them. Hell, this should be across the board for people in general. We had this training at work in regards to customer care. The trainer said the golden rule, “Treat people the way you want to be treated”, no longer applies. It is now, “Treat people the way they want to be treated.” I felt that!

I love shower thoughts! I bet many of businesses have started this way. Next MS Awareness month in March instead of me sharing facts and experiences, I can have a person/people with MS share their journey. Everyone’s journey is different with some similarities. It would be great to share my platform and bring more awareness to this disease. And you, my faithful readers can get a break from reading me droning on and on. Lol.

This month flew by. Life as we knew it continues to change and evolve. We all are altering our life’s plan. One thing should always stay consistent, continuing to be well and whole. If you have any questions in regards to MS, please leave a comment below or you can email me at elsims27@yahoo.com. Much love 🧡💚