Author: elsims

Dr. Mitzi Joi Williams, a board certified neurologist and multiple sclerosis specialist, is the doctor MS patients would love to see. Dr. Williams’ passion is to educate and empower individuals living with multiple sclerosis to understand their disease and their treatment options. As a black woman, Dr. Williams gained expertise in understanding how multiple sclerosis affects the underserved and minority communities. She is an advocate for MS warriors as well as an author. Her book, MS Made Simple: The Simple Guide to Understanding Your Multiple Sclerosis Diagnosis, gives individuals newly diagnosed an understanding of multiple sclerosis and the journey it may take them on. It also highlights multiple sclerosis in black people and the importance of research participation. I have not read the book yet, but I think I will check it out. I chose Dr. Mitzi Joi Williams because she allowed me to cover all 3 of my month’s highlights. She is a black woman (Black Fact and Women’s History) and she is a resource for people living with multiple sclerosis. Dr. Williams is the founder and CEO of The Joi Life Wellness Group Multiple Sclerosis Center. Her office is located in Smyrna, GA. You can find more information on Dr. Williams and her MS Center at this link, https://joilifewellness.com/.

It is great that we have doctors like Mitzi Joi Williams and Dr. Boyd Koffman (my doctor) to advocate for multiple sclerosis warriors, but unfortunately that is not always the case. There are doctors whose focus is not on patient care and treatment. This is when individuals need to implement Multiple Sclerosis Fact #3.

Multiple Sclerosis Fact #3

Be your own advocate!

I cannot stress this fact enough. You know your body best. You know when you are experiencing a new symptom. You know when you have went past sad to depressed. You know when you are having a good MS day and can do more and when it is a bad day and you need to chill. you also know when it is time to see a doctor. At these doctor’s appointments, it is imperative for you to tell them how you are truly feeling and if there is any new issues or a previous one that has gotten worse. Speak your truth. Be your own advocate! Hopefully, your doctor or neurologist will listen and find the best treatment option for you. If you notice your care provider does not have your best interest at heart, it is okay to fire them. They technically work for you. You and your insurance company are paying them to provide a service. Keep looking until you find the care provider that is right for you.

There will also be times where you need to be your own advocate with your insurance company. In a quest to find the right medication, you may need to try out a couple. Unfortunately, insurance companies aren’t always willing to cover certain medications. Call that number on the back of your insurance card and ask what steps can be taken to get the medication covered. It never hurts to try. It can be something simple or you may have to jump through a couple of hoops, the goal is to get the results you want and need. Be your own advocate!

Thank you for joining me this MS Awareness Week for my oddly numbered facts. I have enjoyed sharing these nuggets of information with you all. Multiple Sclerosis and women still have the rest of the month so I will continue to provide resources and highlight women in history. If you know of anyone who can benefit from this post or any other posts, please share this content with them. Be well and whole. Much Love 🧡 💚

Before multiple sclerosis, my two favorite seasons were Spring and Fall. I love Spring because it has just the right temperature, usually high 60s to high 70s. Perfect! I love Fall because I can wear comfortable clothes, the temperatures aren’t too cold yet and of course the changing colors of the leaves. After living with multiple sclerosis, they are still my two favorite seasons, but I have added a new reason.

Multiple Sclerosis Fact #23

Extreme cold and extreme heat makes a warrior feel either stiff as a board or limp as a cooked noodle.

Summer can bring extreme heat and Winter temperatures can drop below zero. Also, Winter brings snow and ice. Walking in the Winter adds an extra layer of danger to an individual who already has issues with balance, foot drop or muscle spasticity due to the cold weather. My feet can get so cold in the Winter that I don’t feel them at all. Add in some stiffness, and it is a wonder how I even get around.

Summer can have awesome days and relatively reasonably temperatures, but then there is days that are in the mid 80s to high 90s as well. Those days require me to be in someone’s air conditioning. The heat saps all the energy from my body and the ability to move becomes damn near impossible. I feel like I’m going to pass out and my feet feel like cement blocks. They call this feeling a pseudo-exacerbation, which is when a person experiences symptoms of an exacerbation, but the symptoms will go away once the body’s temperature gets in a normal range. I’m sure if someone offered to carry me when I am have a pseudo-exacerbation, I won’t say no 😆.

Now to be fair, I am speaking from my own experiences here. I know there are warriors who thrive in the heat and in the cold. Like, I said in the previous posts, every warrior embarks on their own unique journey. For me, I will take Spring and Fall as my only two seasons, 6 months each. That would be the best! Multiple Sclerosis aside, what is your favorite season and why? I would love to hear from you. Be well and whole. Much Love 🧡 💚

Unless you have multiple sclerosis, you will not understand the struggle of living with MS. And we don’t want you too! Even people with multiple sclerosis may not understand what another warrior is feeling and we don’t want them too either. What everyone with multiple sclerosis wants is to not have it. Yet, it is a part of our lives. So we push through, we find joy in the big and little blessings, celebrate every month we go without a relapse and live a life as “normal” as possible. We look to our family and friends for support when times may not be going well and we hope that you all will have our backs.

Multiple Sclerosis Fact #57

People living with multiple sclerosis doesn’t expect you to understand. We expect you to listen and respect our limitations.

This fact is extremely important. As I said earlier, we don’t want you to understand what it is like living with MS. It sucks and there is no way around it. What we need is a friend to come sit with us when we are having a bad day, a spouse who does a couple extra things around the house when our legs are weak, or a listening ear when we need to vent about all this disease has taken away from us. What we don’t need is the comments about what another person with MS can do, the “Why are you always tired?”, or anything else that makes us feel worse about a situation we can’t help. How rude is it of someone not living in my body telling me what it can do? Very fucking rude.

If you are guilty of any of the above crimes, just don’t do it again. It is pretty hurtful and not at all helpful. I just gave a few suggestions on what someone with MS needs. I think the best course of action is to ask your particular MS warrior what they need to feel supported. They may not need anything at this time. Or they have been in need and didn’t know how to ask for help. I know for a while, I didn’t ask for anything because I didn’t want to be a burden. My friends would get so mad at me. Now, I will ask, a little 😆.

Hope you are enjoying my multiple sclerosis facts so far. If you know of anyone who can benefit from this post or any other posts, please share this content with them. Stay well and whole. Much Love 🧡 💚