Category: MS-Cellaneous

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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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My First MS Support Group

So on Thursday, December 19, 2019, I attended my first MS support group. I did not realize I was even attending a support group. I went to the meeting to support my friend, Kimberly, who was the guest speaker at the meeting. Honestly, I didn’t know the topic of the presentation or anything. Lol. You support your friends and that is all I know. The awesome thing was the information was relevant and the presentation was well done. I give it an A.

This support group is called Missing Myelins. I thought that was interesting because the posts I uploaded in March, MS Awareness Month, was titled Missing Myelin Part 1 and Part 2. The group was a diverse mix of people that actually were pretty upbeat. The majority of the people had been diagnosed within the last 2 – 3 years. There was only about 3 people besides myself who had been aware of the disease as long as I have or longer. There was a lady by the name of Kimesha with a lively spirit and obsessed with food like me. She has a beautiful voice and sang us out with Silent Night. It was fabulous. There was a Nurse Practitioner who said the best thing that happened to her this week was a man telling her she was cute. She was very pretty and I am surprised she doesn’t get told that more often. There was a guy by the name of Tommie that was 6′ 7″ tall with a wooden walking stick made by Brazos Walking sticks that his mom brought him. I looked them up online. They aren’t cheap but they look well worth it. I will definitely invest in one in the near future.

I met some interesting and incredible people who may have been diagnosed with Multiple Sclerosis but were not down and out. I met a lovely silver fox who was struggling with her diagnosis because she had suffered for so long with a misdiagnosis as well. Also an amazing lady who was diagnosed with MS as well as Parkinson’s and utilized a motorized scooter. These wonderful people gathered themselves together after a long day at work or just getting out of the house even when they were having a terrible day physically and mentally. I commend them for their strength and perseverance. For coming together to encourage each other. For realizing their need to be supported and to support others.

The topic of the meeting was “Multiple Sclerosis: Understanding and Coping with Depression and Fatigue”. I have definitely experienced fatigue with MS. And there have been days when lassitude set in as well. New word! Lassitude was described as “My tired is tired!” That no matter how well you sleep or if you haven’t even done anything at all, you are still tired. Now that sucks! Thank God I don’t experience that often. My favorite quote of the presentation was “If You’re Going Through Hell…Keep Going” by Winston Churchill. And I believe that is what a good portion of people with Multiple Sclerosis does. Or any other serious, life altering illness or disease. And anyone who is living. Lol.

Now I haven’t experienced depression. I have been sad and I have had days where I was down, but nothing that lingered. I cannot say that I wouldn’t benefit from talking to a licensed professional. But that would be in regards to life in general. Lol. I am thankful that MS is not affecting my mental health at this point. From the presentation I found out that there is not really any licensed professionals that specializes in treating patients with MS in Lucas County and surrounding areas. So I am happy that Kimberly has made it her purpose to serve people affected by Multiple Sclerosis and their caregivers/families. It is needed. And she is the perfect person being as she lives daily with a person affected by MS, her husband.

So I don’t think I will become a regular at the support group but I wouldn’t mind stopping in from time to time. It is great to know there is a group available that is not all doom and gloom. Holly, the group leader, was warm and welcoming. And I like the group name 😂😂😂. I know I’m silly. I am glad that I attended the presentation and the group. Definitely a positive moment. Be well and whole. Love you all.