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MS-cellaneous Pt. 3

Today as I was walking down the steps to leave out for my sunrise adventure,  I seen one of my neighbors walking up. I opened the door for her. At this point she proceeded to hold the door to let me out. I had a few bags in my hand so when I stepped out I was off balance. I started to lean to the left, which is where she was standing, and almost knocked her down. I balanced out in time, thank God. Lol. Would have been a little embarrassing to wipe my neighbor out. She was like, “I wouldn’t have let you fall”. I told her that was good to know. Smh. MS strikes again. I have so many stories like this.
At my job one of my duties is to answer the phone. I talk a lot and I talk fast. So I am immediately annoyed when people are on the phone taking forever to say what they have to say or humhawing around. I usually try to finish their sentences so that whatever it is they need can be taken care of quickly. The other day I thought about how I used to be a fast walker. My little legs would move to get where I needed to be and I wanted all slow walkers out of my way. Well now I am a slow walker. I am annoyed at my own self. Lol. There is at least one bright side to walking slow, I notice so much more. Instead of speeding past everything in life, I have the opportunity to experience it. To be in a particular moment for a little longer. To glean more from watching a situation unfold right in front of me. I notice every crack in the pavement, each slight raise of the ground, the distance from Point A to Point B. These are precautionary measures. But within those times, I am aware of everything else. Not exactly how I would have chosen to live my life. Yet interesting none the less.
Now let’s go back to the slow talkers. After having this painful slow conversation with an individual on the phone, I said to myself and my coworker, maybe I need to be more understanding. One of the symptoms of Multiple Sclerosis is trouble with speech. Here is a list of a few.
  • “Scanning” speech, when a person’s normal speech pattern is disrupted with long pauses between words or syllables.
  • Slurring words. …
  • Trouble changing tone of voice.
  • Nasal-sounding speech.
  • problems with volume, strength or quality of your voice.
  • weakness of the chest muscles, making breathing and speech difficult
One day it might be me. And if it is, I would want people to be understanding and give me an opportunity to say what I need to say. The lesson of slow down and live in the moment was brought to me by MS. I just need to apply it to other areas of my life.
I continue to stay thankful throughout this journey. I know that it could be worse. I have read other people’s Multiple Sclerosis journeys. I recently read this women’s where the doctors diagnosed her with Postpartum Psychosis. It took the psychologist to diagnose her with MS. What the hell? And this woman had had multiple MRIs and no one caught it. For years she dealt with paralysis and speech issues. But it was all in her head. Which literally it was. There was lesions on her brain from the episodes she had gone through. This was years ago but it is still happening today. Even though I am not a fan of medicine I do believe that it can assist with slowing down the progress. So to go years in and out of episodes without any medication can cause this disease to progress rapidly.
To go years without a proper diagnosis experiencing the signs and symptoms, the diagnosis can be a relief. Multiple Sclerosis is a disease that can affect so many areas of one’s life. My heart goes out to anyone who has it. Though I may not experience their particular struggles, I can empathize with their journey. In my day to day life, I don’t really talk about MS. I don’t believe that discussing it and making it a focal point serves me well. I am more focused on living a life that is full of light, laughter, adventures and possibilities. But if anyone has any questions, wants a better understanding or wants to discuss their own personal journey with Multiple Sclerosis, I am available. The door is not closed, it’s crack. And I will fling it open and welcome you in.
The world is in a crisis right now. There is a deadly virus on the loose and it is affecting so many people. I wish I had words to soothe but honestly I am terrible at that. I will just say if you fit the description of someone who is more likely to get the coronavirus, be careful and protect yourself. I don’t want anyone to live in fear but to live with caution. Please continue to be well and whole. Love you all.

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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.

The sun looks like big blob. Lol

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.

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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.

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