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Tag: relapsing-remitting multiple sclerosis
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A Black Woman’s Journey With Relapsing-Remitting Multiple Sclerosis
Life With Relapsing-Remitting Multiple Sclerosis
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Lessons From My Journey With Relapsing-Remitting MS
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By Darbi Haynes-Lawrence, PhD, as told to Evan Starkman
It’s been 13 years since my neurologist diagnosed me with relapsing-remitting MS, and I still forget that I’m disabled a lot. I’m 47, but in my brain I’m still a college track athlete who ran marathons on the weekends.
I’ve always been a big goal-oriented person. I got my doctorate by the time I was 30, and my dream has always been to be a dean of students. I can’t now. I have to be realistic, and that’s meant modifying my life goals. It can be frustrating.
Sometimes I feel very much like a fraud, in that I could be doing so much more if I didn’t have MS. It’s a daily battle of feeling like I’m not doing enough. Every day when I need to rest for just a little bit, one part of my brain is like: “No. You are so lazy. Look at these other people who can do it without lying down for a rest.”
Sometimes I give myself a few minutes to be in a puddle of pity. But not for long. I let the negative thought come through. I reframe it. Then I say it out loud: “I am allowed to rest right now. Disabled or not, I’m tired and I’m not going to be any good to anyone if I’m not rested.” Then I allow myself that time, and off we go. It’s rare if I take a whole day off.
Prepare to Be Doubted
A number of people have told me, “You don’t look disabled. Why are you using that disabled parking spot?” And it’s like, “Well, give me a second to get out of my car and pull my wheelchair out, and let me show you.”
The doubt that people had still haunts me. It was a real attack to my self-esteem.
Sometimes health conditions aren’t visibly obvious right away. They’re “hidden” physically. But the condition is there all the same.
Question Your Doctors
Years before I got diagnosed with MS, I was getting completely bizarre symptoms. First the roof of my mouth burned. It was absolutely on fire. Then the right side of my face was sagging. And then it just progressed from there, to the whole right side of my body becoming very weak.
In my early 20s, I remember beginning to stumble a lot and thinking, “Oh, gosh, this is what happens to you when you go from being a college athlete to only working out once or twice a week.”
I was also having a difficult time remembering words. It is horrific going from a very large vocabulary to just struggling for the right word at times.
After I had my daughter at 30, my strength began to decline quite a bit. Over the next few years, I started choking on my food because I couldn’t chew and swallow well. I also had trouble seeing out of my right eye.
My doctors said: “You’re a young professional woman. You’ve got a small child. You and your husband have a business. You’re just stressed.” Women often get told “it’s just stress.”
One doctor told me I was crazy. He was my general physician, and he damaged the trust that I have in myself. He made me doubt everything I was experiencing. I had assumed he would treat me well and be the leader of my medical care team. But it took a lot of emotional battering from this man for me to realize that he was a really poor choice for that role. Eventually I fired him. I wish I would have believed myself that I wasn’t crazy.
It was my dentist who got me on the right track after I told him that my lips were swollen and the roof of my mouth was burning. Those could be signs of a neurological health condition, he told me. And that’s what prompted me to see the neurologist who finally diagnosed me with relapsing-remitting MS.
So, I would recommend that you question and investigate your health care team. And don’t be afraid to fire your doctor. Never let them belittle you just because they have the “Dr.” in front of their name. Keep asking questions. Keep searching for answers. And don’t give up.
Your Family May Need Help Adjusting
When I finally got diagnosed with MS at the age of 34, I was relieved to have a name for what I was experiencing. I was also relieved that there was a plan of treatment. I could keep going. My career wasn’t over. I was going to be able to be there for my daughter, who was 4 at the time.
The rest of my family was terrified. They all grieved the diagnosis, even though I didn’t. I thought: “How do I explain multiple sclerosis to my daughter? How do I explain it to my family? How do we keep moving forward?” I wasn’t finding the information that I was looking for as a mom.
Eventually I created the resource I didn’t have back then. I wrote A Conversation About Multiple Sclerosis, my first of three children’s books for the MS Foundation. I hope that it empowers families.
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How I Manage Relapsing-Remitting MS
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By Ann Marie Johnson, as told to Shishira Sreenivas
I was diagnosed with relapsing-remitting multiple sclerosis (RRMS) on New Year’s Eve in 2002. I was 32. At that time, I had just started embarking on my career in Brooklyn, NY. I just graduated from grad school and had started my new job, and I was an independent woman. I was always on the move. It’s funny because people often could hear me before they could see me. I’m a petite woman that used to wear 5-inch stilettos. Any given day, you could hear the clackity-clack as I was coming down the street or hallway. Life was pretty good.
One particular day while I was at work, I noticed that the pen I was using to write my notes with kept falling out of my hands. At first, I was like, OK, what’s going on here? But it kept happening. I started feeling these funny feelings inside of my body. My supervisor was with me that day, so I said to her, “Look, I don’t feel right. Something is not right.” She let me go home and told me to finish up later.
When I don’t feel good, I make a cup of tea. So I did that and went to sleep. When I woke up, the funny feelings had shifted to waist down. It felt like pins and needles when your hand falls asleep. I also had numbness and my legs didn’t move. I fell to the floor when I tried to move.
Thankfully my roommate came to help and took me to the ER. There, I spoke to the neurologist. Fast forward a little. After a series of exams, tests, spinal tap, EKG, and an extended trip to the hospital right before Thanksgiving, more than 2 weeks later, after more workup and just a few days after my birthday, I was diagnosed with MS.
I didn’t know much about it at the time. All I knew was Montel Williams and Richard Pryor had it. And my thoughts were: What does that mean to me? I was just a poor girl from Brooklyn, NY. I don’t have any money, I’m not married, will anybody ever want me? Would I be able to have kids? Will I be able to go back to work? These were the things swirling in my head.
Use Assistive Devices and Find What Works for You
As I learned to live with MS, I was also learning what that was going to mean for me. As in what does it mean for my walking? For that I have canes. I use a folding cane, and I have one with wood carving.
In terms of the emotional aspect of this illness, I figured if I’m going to have mobility devices, I’m going to look good with it. So I got a leopard cane to match my leopard print shoes. For the holidays, I have a black and white cane. I also have my African queen cane. So instead of people hearing me from the clack-clack-clack of my shoes, now they heard me because of the clack-clack-clack of my cane.
When I have good days, the cane stays in the car. On days when it’s a little challenging, I’ll take it out.
Strategize and Plan Your Day Ahead of Time
Different symptoms are definitely going to give you reminders that you have MS. And then depending on what you’re doing in your day, you have to strategize. Because of my fatigue, I don’t really function that well early in the morning. Anybody that knows me, like my friends, they know, “Do not call Ann Marie to go anywhere in the morning!” Because I’m like a wet noodle. I am at my best in the afternoon.
I also started to write everything down, especially at the doctor’s office, because there was no way I was able to remember everything and notify the doctor. I started to write about things like how I feel or what I ate. I would write about the time and about my temperature. From all of that, I was able to see patterns. Using that, I was able to modify certain things in my life.
For example, I work long hours. I found that it’s best for me to eat small meals because if I have a big breakfast and then have a big lunch, it exacerbates my fatigue. If I have small meals stretched out during the course of my day, it maintains my energy level to a point where I can function, and I’m not nodding off at work.
MS causes me to have frequent urination. I have to be mindful of how I get my fluids. I know I can’t get that cup of coffee in the morning and then travel to get to my destination because I won’t make it. So instead of nursing a drink, I try to drink things in one setting. That way, when it’s time to dispel it, I do it in one shot.
But again, these were changes I was able to make when I started writing and started seeing the patterns. I was able to make real change in my life. However, I’m still learning.
Join a Support Group
The first couple of years were really spent on trying to figure out me and what MS is going to look like for me because everybody’s MS is different. I was looking for information, and I contacted the National MS Society. They helped me get into support groups. Through this, I started to facilitate my own groups. I like to say I took the “I” from chronic illness and added “We,” and made it wellness.
I found others like me. I could hear others’ stories about how they are coping or exchange little cheat sheets. Find out where to get canes from, or what drugstores have really good canes. Find social media groups or discuss what different diets people are using.
It gave me the opportunity to discuss or see how this guy works with this or that person and to get tips on how to live with MS. But also, I got to hear about people who travel, or get a doctorate, or get a raise, get married, or have babies. Just regular life events for people who just happen to have MS. That is the greatest level of support, and that really sparked wellness. It made me feel better. And when you feel better, you do better.
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