elsims

March 8, 2020October 31, 2020

MS-cellaneous Pt. 2

Ok y’all know I am childish. I rented and watched Frozen II all by myself. Lol. I didn’t think that it was particularly suited to kids which a majority of animated movies are not. I enjoyed it but it was pretty heavy and not a lot of funny parts. There was one part with Olaf calling out names that tickled me for some odd reason. I giggled for so long. Lmao. If you watch the movie you will know what I am talking about. And if you laughed like I did please tell me in the comments.

I have been working on the blankets that I am going to giving away at the MS walk so I have put my writing on hold. I want to do it all! So I set aside my crochet today. It is a beautiful day in Toledo and I am sitting on the water writing. Listening to the seagulls.

I am kicking off Multiple Sclerosis (MS) Awareness Month on this eighth day of March. I talked about MS last year in 3 separate post. Missing Myelin 1, Missing Myelin 2 and Me Pt. 3, My MS Story. I will not bore you with those details once again. If you haven’t read them, I recommend you do. Pretty good posts if I do say so myself. A few things have changed since last March but not much. The good news is I am still mobile, working and determined to live the best life that I can. The bad news is, I still have MS. Lol.

I started a new medication called Ocrevus and I am not a fan. Ocrevus is a twice yearly infusion treatment that works for people with Relapsing Remitting Multiple Sclerosis and people with Primary Progressive Multiple Sclerosis. The first infusion is administered in 2 parts. You get your first 300 mg dose and follow up with the second 300 mg dose totaling 600 mg two weeks later. The next infusion given 6 months later is the full 600 mg dose. The treatment process as far as receiving the medication went well. The facility where I received my treatment was great and the nursing staff was awesome. I did not have any side effects in the process and it was completed within the time it stated. But there is a problem. After the first 300 mg dose. I felt better. I walked a little better and generally felt like I had more energy. After receiving the other 300 mg dose it went downhill. My walking became worse (I walk like a penguin). With the struggle to walk normally for me, I will tire out quickly. My legs feel like I have on cement shoes.

My goal is to give medications that I am prescribed at least a year. I have a tendency to give up too soon when something isn’t working health wise. So I make it to November. It is about 2 – 3 weeks before my next infusion and I realize I am moving a little better. I am not struggling as much to get from A to B. I am feeling better in general. I read in one of the forums people saying they can tell when they are due for their next infusion because their MS symptoms start to get worse. So I say maybe I am getting better and feeling better because I am due for my next infusion. Maybe the medicine is actually making my life difficult. But I said I would give it a year, so I get my next infusion, the full dosage. Well I am sure at this point y’all have figured out what happened. I am back to walking like a penguin, tired as hell and struggling to get around.

~~December 2, 2019 – Getting my last infusion. They had to put the IV in a weird spot.~~

The worse part, this shit lasts for 6 months. Why????? Lol. I have about 2 and a half more months before this wears off. There is not any scientific evidence to back me up but I think that it is just too much medicine in me. My body can’t process it. My body has never worked well with medication of any kind. It’s like it knows it is not suppose to be there. I am definitely changing medications. There is a shot that I can inject into myself once a week called Avonex. I am going to talk to my neurologist about it at my appointment in April. Still no scientific evidence but maybe this would be better because it is in small doses. I previously injected myself with a medication called Plegridy that was bi-weekly. I would usually feel better on the second week as the medication would start to wear off. Too much medicine people. Lol.

I have a few more posts I want to get out this month. The one that is going to be so important is on hold because I don’t know when I will get the approval. I submitted for this device that will help with my mobility but it has to be approved first. I don’t want to give too much detail yet. I am hoping for the approval before the end of March. It would fall right in line with Multiple Sclerosis Awareness month. We will see.

I hope everyone is doing well and working hard on your goals. I am still rooting for you in whatever it is you want to accomplish this week, this month, this year. You got this!!! Continue to be well and whole. Much love to you all.

March 1, 2020

Marching Into A New Day

February has come and gone in the blink of an eye. I wish that I could say that I rocked it out this month and everything went well. I didn’t and it didn’t. The good thing is I am not discouraged or negative about the results. I am aware that sometimes things don’t go as planned and we need to readjusted and continue to pursue our goals. That is where I am on this first day of March. I will narrow down what goals I can accomplish this month and make it happen. I believe that I can still achieve them all by the end of the year. And that is what is most important.

I usually have a terrible time committing to anything on Netflix. My life fear of commitment to relationships transfers over to my Netflix and chill streaming relationship. Or Hulu and chill. I just don’t want to be two episodes in and decide I don’t like the show. Now I have just wasted 2 hours of my life. So it is a surprise that I am almost done with a show. My friend told me about this new dating show called Love Is Blind on Netflix. There is a male side and a female side. They go into these little rooms called pods with a piece of colored glass separating them. They cannot see each other at all. Based on the emotional connections that they make with each other the man proposes, or the woman if you like, to the person on the other side. Now they still have not seen each other. Once the proposal has been made they do this big reveal. The couples then go on a vacation together, move in and ultimately have a wedding. All in about 40 days or so. Very interesting concept.

If I had been approached about this, I would have said yes. I am so shallow! I don’t think that looks are everything but I believe they do play too big of a part in an attraction for me. If I am not immediately attracted to a man, there is a slim chance that he will grow on me with his personality and great qualities. I have already friend zoned him in my mind. I know that is terrible. I have tried dating websites and I swipe left on looks even without reading their profile. Now in my defense, if a man is attractive and he doesn’t believe in God, I am swiping left on him as well. My man doesn’t have to look like a Brad Pitt or Idris Elba, but I do need to find him attractive. But maybe if I was presented with a great personality, funny, open and considerate man without seeing him first, I would be okay. Wonder if they are going to have a season 2?

March is Multiple Sclerosis (MS) Awareness month. Besides this post, all other post will be dedicated to MS. There are new things going on and I would like to share it with you all. If you know me, I am not a sad person even though I have MS but I do speak my truth. I will tell you if all is not well. Nothing I say in relation to MS is to get pity or sympathy. It is just to inform. I didn’t truly know what Multiple Sclerosis was until I discovered I had it. And most people don’t know until I share my story. So I am willing to share to inform.

As this year keeps moving by so quickly, I just hope that no one loses sight of the excitement that you had when this year started. It is still the beginning and each new day brings its own set of possibilities. A lady was approached in a subway terminal and asked to complete the lyrics. This one little incident on the way to meet a friend for lunch changed her life. She has went on Ellen and sang for millions of people watching TV, on YouTube and Instagram. Why can’t our lives change just that suddenly? I believe that it can. So please don’t give up. Even if it seems as if you have been fighting the same fight for years. It has an end date. Continue to be well and whole.

February 23, 2020

And The Winner Is…

Not me. Not fucking me! Just kidding. I’m not mad. I was not chosen as the scholarship winner for Marie Forleo’s B-school. And I was bummed out for that day but I am still happy and proud of myself for reaching out even when my negative self talk tried to take over. I am happy that I was given the opportunity and sending out congratulations to the winner.

I was on Instagram and I follow this guy named Shai Amiel, The Curl Doctor. He is a hair stylist that specializes in cutting naturally curly hair. Like he knows how to bring out the best in your hair just with the way he cuts. I know that when my hair gets longer I have to set an appointment with him. Now I might have to sell a kidney for the the trip and the cut but I think it will be worth it. He posted a picture of this lovely young lady and was celebrating in his work. Her hair was on point. Here is the pic.

The problem is some person decided it was their duty to let him know that the young lady had a great head of hair and pretty much would have looked good either way it goes. Really!?!?!? Why shit on this man in his moment???? But people do that and they do it often. If I am in my moment and I am excited and proud and you try to downplay it, I can tell you the version of Ebony you will get ain’t the good one. It is going to be the one I reserve for the devil or something equally evil. Lmao. Seriously though, stop it. That is not okay and it is just mean spirited. And don’t pull no harm no foul. It was a foul and harm has been done. Even if a person tries to backtrack the harm has already been done. Don’t get me wrong, this message is for me as well. I need to be more aware of what I say to people. If it is not encouraging or uplifting, I need to keep my trap shut.

I know we are close to the end of February and I am not doing good on the goals. I may need to reevaluate what I can accomplish in 30 days. It is not that I don’t have the will or the motivation. I’m lacking a little in the finance department. So my friend who I speak with often told me about a job opportunity. I submitted my resume and the man called to set up a meeting. That should have alerted me right then and there. But it didn’t. I show up for the “meeting” and it is going well. The gentleman proceeds to ask if I was informed of the pay for the position. I let him know I was not but I also did not ask. What is wrong with me people? Who doesn’t ask these questions? That would be me. To say I was surprised when I discovered the position is a volunteer opportunity is an understatement. Now I’m like who and the hell recommends me, who has goals and dreams that require money, for a volunteer position? I’m not going to say his name. I won’t put him out there like that. But bruh, REALLY!?!?!?!

Now I accepted the position. I know, I know. But the chance to learn new and different things just took over and the next thing I know, I said yes. Right now in my life I am not serving. I am not giving of myself and that is not good. I believe our purpose here on this Earth is to serve. What capacity that you do it in, is up to you. I was totally not seeking this out but it was brought to me. There is the possibility that I can benefit these people in countless ways. And after taking a deep breath and remembering my purpose, I am looking forward to serving, learning and giving the best that I have to offer.

So besides not winning the scholarship and accepting a volunteer position, I still have not found a chair for my desk. I was so close. So close. Out of about a hundred chairs, I seen the perfect one. It was on the top shelf, in the back just waiting on me. Or so I thought. I seen the red sticker and knew it was clearance. I know all my little hints is giving this away. The team member gets the chair down for me and it was scuffed up. Like not in one spot but multiple spots. Ugh, what the hell? Of course it was the only one. Here it is.

Now I am obsessed with finding something just like it. Smh. We will not go any further into this crazy mind of mines. Lol.

It was a different kind of week. Mostly everything I touched outside of my normal doings did not go my way. I was mentally, emotionally and physically tired by the end of the week. There was just one thing though. I could still hear a “but”. You did not win the scholarship, but… The job was not what you expected, but… I don’t know what is on the other side of that “but”, but I have faith that it is going to be just what I need. How was your week? What are your goals, dreams and intentions for this week? Please feel free to share in the comments or email me at elsims27@yahoo.com. Life may not be all what you expect or dream, but continue to be well and whole. Love you all.