Living with MS with Ashley Johnson
March was Multiple Sclerosis (MS) awareness month. Multiple Sclerosis is “considered to be an immune-mediated disease in which the body’s immune system mistakenly attacks myelin in the central nervous system.” (www.nationalmssociety.org) This disease hits close to home for me. My husband lives with it, as well as my sweet friend/sister, Ashley. Last year I introduced my husband, Armand, and he shared what it’s like for him to live with MS. Today, I would like to introduce you to my girl Ashley.
I’ve been friends with Ash for almost six years now. And, we attended the same church for a while longer than that. I have been blessed to see her blossom from the high school basketball player, to the beautifully gifted and talented young woman she is today. I’m so happy to share her interview with you.
She’s a 28 year old young woman that has been living with this disease for almost six years. But, her diagnosis is not her first experience with it. I hope her transparent story, and experience, helps you have a better understanding of this disease. You may even learn how to support those you know who have it.
Dear Lord,
Thank You! Thank You for Ashley and her willingness to share her experience of living with MS. Father, I’m lifting up her and others living with this disease. Please help them live life to the fullest and not allow it to hinder them.And Lord, we pray that Ashley’s experience blessed someone and provided a better understanding of what it’s like to live with MS. In Jesus’ name, AMEN.
Love, Steph :)
When were you diagnosed with MS?
I was diagnosed with MS October of 2014
Prior to your diagnosis, did you have any symptoms?
The symptoms I experienced consisted of extremely blurred vision in my right eye, dragging of my feet due to them feeling heavy, not being able to retain information and process, a shock sensation in my spine when I would look down and uncontrollable body movements on the left side of my body
What did you know about the disease before your diagnosis?
My mom actually has MS so for about 16 years I watched her struggle with it, and when my symptoms began to become more exaggerated I knew I had it before I was even diagnosed. Even then I still did not know much about it besides the fatigue and it affecting your brain in some capacity.
How did you feel after the diagnosis?
After getting diagnosed I was sad, but I also felt relief because we knew what it was I didnt feel in the dark anymore about why these things were happening. I did and still somewhat do fear the future though.
I know there are many different meds to treat MS. What has been your experience with the medicine to treat MS?
My first medication that they put me on were subcutaneous shots. All that means is they are shots injected into your fat. I took those 3 times a week bit absolutely hated them for about the 3-4 years I was taking them. Although I'm not a small girl, lol it was difficult for me to find places on my body to do the shots. I have quite a bit of muscle so when doing the shots and I would accidentally hit a muscle, it was paaaiinnffuull for about the next week and boy was it swollen. They soon stopped helping after going in for my annual MRI and they were showing that there was still progression of the disease. I am actually on a new medication called Gilenya. This one is a pill that I take once a day. It seems to be helping tremendously, the biggest con is that it lowers my white blood cell count to just about below average. You need your white blood cells to fight off infections and diseases so I get sick quite often, but I rather get sick honestly than have to deal with the fast progression of the disease. So far I have shown no progression and no new pr active lesions thank you jesus. I still have the pains and aches and fatigue, and I have had a few run ins with ocular neuritis but it's life. I DEAL!!
Since being diagnosed, what has changed for you? (Physically? Mentally? Spiritually?)
Mmmmm I would have to say Physically I have gained weight and lots lol. When I got diagnosed I was the smallest and healthiest and first I had even been. After my diagnoses truthfully I just kinda let go and started emotionally eating, I know what I need to do just sometimes I'm too tired to go work out. I WILL GET BACK TO WHERE I WAS SLOWELY BUT SURELY LOL... Mentally honestly some days are better than others. They gave me xanax and put me on an anti depressant. I can happily say I have never needed the xanax accept for maybe once or twice when days just seemed unbearable. The anti depressant that I am on is a very small dose, but it just seems like it makes things easier to deal with, It doesn't fix the problems, it just helps me not give too much energy to the things and emotions that dont matter I guess. Spiritually I would have to say I have e always been a believer and always knew that I was a child of God and was protected. I do admit after the diagnosis, I was angry, confused, upset, and annoyed as to how he can let something like this happen to me. You know how the old folks say you dont look like what you been through or shoot are going through? Yeah that's me and my testimony lol. Even though I hurt, get depressed, fatigued, and all the other stuff that comes along with the disease I am still kept. A lot of people dont even know I have MS unless I tell them. Again some days are better than others but I can definitely be way worst then I am now. All I can say is that he has kept me in the midst of it all. I think some people don't realize that it's an emotional disease as well and if you let it take over you mentally, it can take you out. So whether you believe in God or a higher power or whatever it is, you need something to hold onto while fighting and you need to have some sort of knowledge or inkling that you are ok.
What's a good day with MS look like for you?
I would have to say a good day with MS for me looks like a day where I can jump.out of bed, be productive, take one good nap and go throughout the day with no aches or pains I Guess lol......IDK I don't know what it feels like without it. I'm just thankful to wake up every morning and still have the ability to walk.
What does a not so good day, with MS, look like for you?
A not so good day or me is probably one that is mentally challenging for me. One where all I think about is the things I could have done or could be doing if I didnt have MS.
How do you deal with the not so good days?
The generic answer is to pray. I do pray of course bit at the end of the day just dealing and not feeling sorry for myself. This is my life and I choose whether to have MS or let MS have me.
Do you have an MS community?
My mom lol
Before this interview, how open or transparent were you with others about having MS?
I am pretty open about it. For about 3 years whenever I would go to the doctor for my check ups I would just cry and cry. Lol now I cry afterwards bc I am just so blessed how far he has brought me from some years ago. I used to tear up when talking about my symptoms or how I found out I had it but now.......I'm ok talking about it. Honestly it takes some years to get to that point where you are like ok this is my life, adjust, and keep it moving boo. I still have my days where I'm like this suuuuuuuccckkkssssss but I'm still blessed beyond measure.