Category: MS-Cellaneous

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.

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.

Here we are once again acknowledging the disease called Multiple Sclerosis and supporting our family and friends affected by its unpredictableness and life changing ability. I have participated in the MS Walk in some fashion since 2013. The first year I really didn’t know what to expect so I came in as a volunteer. I also had not shared with many people what I knew to be Multiple Sclerosis, even though I was not officially diagnosed. That would come a year later. The next few years I did actually walk. The last 2 years I struggled to walk the full mile due to the route being unfriendly to people with MS. This year the location was changed but I am not sure that it was for the better. I didn’t walk this year. My legs were tired and I just didn’t feel like walking fucking slow as a turtle. Ugh…it gets frustrating sometimes. Also, I had just a little more trim to finish on the blanket that I have now adopted as my yearly tradition.

This year I was determined to give a blanket to a man. The first 2 years I was able to bless two lovely women with beautiful blankets. I was lead to these ladies by God and I am glad that I followed through. Here they are for anyone new to this blog.

My mom had actually been working on blankets to give to veterans that utilizes wheelchairs. I did make one blanket for the veterans but I dislike putting them together so I can’t show you the finished product at this point. Will share once my mom connects the squares 😁😁😁. Those blankets gave me an idea. I decided to give a blanket to an individual with MS who uses a wheelchair. Since the blanket would be smaller than my standard blanket, I decided to make two of them. Pretty ambitious for me. I am lazy when I crochet. I do it at my own pace and I am easily distracted when I am working on a project.

Now I picked out my colors and was pretty solid on them. My mom however had an issue with one of my colors. She is such a hater 😂😂😂. We had intense discussions about yarn. Can you believe it?!?!? Yarn!!! 🤦🏾‍♀️🤦🏾‍♀️🤦🏾‍♀️ Here was the options.

Anyways I submitted a poll to six people and she got the majority vote so we went with it. And since she wanted it so bad, I told her she had to crochet it. She did the orange parts of the blanket and I did the variegated.

I have to admit, once it was all put together, I actually liked it. Not sure if I would have liked my pick better though. This lovely blanket was given to a young lady by the name of Mandy. She had a great support system with her that day. They were loving on her and friendly and welcoming. They asked for me or my friend Bridgette to take a picture for them. Bridgette took the pic. I debated on which blanket to give her because her team colors and even her shoelaces were lime green. The blanket with lime green would have matched Mandy better. But I was determined to give a man a blanket that year. Bridgette and I figured as sweet as they were she probably wouldn’t care if it didn’t match her team colors. The rest of my team made it back just in time to catch her team before they disbursed. We all had an emotional moment presenting that blanket.

Mandy was totally cool and I am happy that God lead me to present her with that blanket. She even gifted me with a bracelet.

Now to find a man using a wheelchair. I had seen a gentleman earlier when I was working on finishing the blanket. Here is the finished product.

I figured I would find him later when my team had came back. Not exactly. Most people didn’t even come back in the building. They were still hanging around outside. I was getting a little nervous that I would not be able to find a man for the blanket I had made specifically for him. As we stood outside there was a team that was at the finish line taking pictures. I had found my guy. Now I am not sure if it was the original man that I seen but he was the man that was getting this blanket. I walked over to him and introduced myself and told him that he was my guy 😂😂😂. Yeah I used those exact words. I shared with him that I had MS and my goal was to give a man with MS who utilized a wheelchair a blanket. Bob was definitely touched by my words and his gift. I was ecstatic that I had found another great person to give a blanket. His family shared that Bob always complains of being cold and that the blanket was perfect for him. Yes God knows what He is doing.

I am undecided about the new walk location but I do love the walk. It is great meeting new people and making connections. I love the support I get from my friends and family who walk and even the ones who are unable. I know that they would be here if they could. For some it was just not a good time because it conflicted with very important issues going on in their life. My prayers to you mom. Also the date of the walk was pushed back and it made it difficult for some people to attend. It was actually held on my friend Selena’s birthday. Happy Birthday broad!!!! I also love to see the team shirts and so many people who show up for and support people affected by MS. I am not sure if our loved ones know how much it means to us to have people in our corner. It makes me feel overwhelmed with love. This is some pretty sappy shit coming from me. But I am so serious. I see the love and support every day not just for the walk. Thank you my loves 🥰🥰🥰.

For those who were unable to make the MS walk this year, I hope that the date is a little more convenient next year. I really want to do it up big. New team shirts, banners, a marching band. Lol. Just kidding 😂😂😂. I definitely want to have a bigger team and new shirts. I will start planning a little sooner and keep people updated with information regularly. This terrible disease will not get me down or take away my joyful spirit. I am determined to be me. I am determined to be well and whole, in my mind and my spirit even if my body is not. I want you all to be well and whole too. Love you!!