Living with Multiple Sclerosis!

I knew nothing about Multiple Sclerosis prior to getting diagnosed when I was 23 years old. I remember the day specifically, it was in the middle of Summer and I was driving home from work. My hands started to numb and get tingly, as I walked up to my apartment doorstep, I could barely grip the keys, my fingers instantly cramped and curled into itself. This was my first flare-up. Needless to say, I was completely scared, waited for a minute or two and it finally went away so I could open my door. Not long after I had MRI scans, blood work, spinal tap and an eye exam. At this point I was officially diagnosed with Multiple Sclerosis. To be honest, what I knew was that it effected only “old people” and wheel chairs were usually part of the picture. I was ignorant and had no clue it could effect young gals like me, who seemed completely healthy.

What is Multiple Sclerosis?

The cause of MS is still unknown – scientists believe the disease is triggered by an as-yet-unidentified environmental factor in a person who is genetically predisposed to respond. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted. Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease. Multiple sclerosis involves an immune-mediated process in which an abnormal response of the body’s immune system is directed against the central nervous system (CNS).  The CNS is made up of the brain, spinal cord and optic nerves. Within the CNS, the immune system causes inflammation that damages myelin — the fatty substance that surrounds and insulates the nerve fibers — as well as the nerve fibers themselves, and the specialized cells that make myelin.

Dealing with it

After getting diagnosed I immediately started taking Copaxone, a 3x a week shot that I would have to give myself. The process wasn’t easy, who loves needles? Um, NOT ME. It took challenging moments with my MS nurse and phone calls to my mother to get enough strength to just take the shot. I would stay on the phone for almost an hour while my mother on the other line would countdown “3, 2, 1…ok go, hit it”, she was referring to the auto inject gun button that I had to push for the shot to go into my skin. It was a rough time. I finally got the hang of it, and it became part of my routine.

The Symptoms

If you know me personally, you know that I don’t slow down, I have a lot of energy and zest for life. I won’t let anything stop me from doing what I love. And I wasn’t going to let MS slow me down. When finding out that I had MS, some of my friends gave the typical big eyed “wow, I never knew”, well you wouldn’t know because you don’t see it…but I FEEL it.

I have Remitting Relapsing MS, I have a total of five lesions, four are located in my brain and one “Big Momma”, which is my largest lesion ( yes I gave her a name ), located on my cervical spine. These lesions cause my daily symptoms like tingling, numbing and fatigue. MS has made me a stronger person that’s for sure. I do my best to stay active, eat well and keep my strength up by working out and taking my medication, vitamin D supplements and staying cool.

My main symptoms are numbing/tingling in both of my hands and random fatigue that hit’s me. If I’m too hot or too cold, my symptoms tend to get worse so I try to keep myself as comfortable as possible but as we all know life doesn’t hand you the most comfortable situations or weather. I’ve had some random weird syomptoms too that are hard to expain so I just won’t explain them, it’s an MS thing and I’ll leave it at that. I’m not a big one to complain about my MS because truth to be told, I don’t like complaining. But I do hope by opening up about it I can help others, which in fact is my favorite thing to do, which is serve.

Good News

Last June 2018 I had some great news. The morning started with the usual routine, woke up, had coffee, checked emails, went to a work meeting, then to my own wedding dress fitting! Last but not least, I had to visit my MS Specialist to review my recent MRI scans taken in August. As I nervously sat in the patient room waiting for the nurse practitioner, I could feel my heart rate rising, I prepared myself for the worst but prayed for the best.

But God is good and he wants the best for us. Praise Jesus, my MRI was stable, with no new or active lesions, and “Big Momma” the largest lesion on my cervical spine even seemed a bit smaller. I’m one thankful gal today. I also got to chat about new medication options, the shot has taken a huge toll on skin for so many years of injecting. So long story short, I’m super excited to start taking my new medication that is an oral pill! Bye bye shots, hello easy peezy pill! I think it will fit my go-go-go creative lifestyle, and I’m eager to see how it helps me move forward living with MS and healing my bruised skin.

Closing

I don’t want you to feel sorry for me. I purely want to share my vulnerability and my journey living with an auto immune disease. I want you to know that you can still live a beautiful and exciting life that doesn’t have to be controlled by your health. MS attacks every individual differently and the severity. You WILL get through it, you WILL have a new normal, but you CAN still enjoy life as it is! Take me for an example.

I used to have this fear that if I told someone about my MS they would think that I was incapable of doing certain things, and that was not the case for me nor was I going to let it be. Yes, people were surprised when I said I had it because they saw me doing 5,000 things at once and just couldn’t understand. Well, part of that is my personality and will ( and I’m sure I’m a bit stubborn ) I just learned to live with it and to prepare myself in advance for situations in case my symptoms get ahead of my body. I’m not slowing down anytime soon.  Feel free to ask me questions or reach out to me, I’m all ears! Xo.