The Lesion Queen

*clears throat*

Let Me Introduce Myself 🙂

Hi World! I’m a 31 year old woman living with MS since I was 17 years old!

Now I’m not an expert by any means but I have worked in healthcare for the last 10 years and I’ve been living with it. I tell my story because there wasn’t much positive MS stories when I was diagnosed. And by no means is this a fairytale but there is life after MS:)

At the time I was diagnosed I was a senior in highschool and the symptoms I was having I just chalked up to senior year stressors. I had migraines nearly 24/7, one side of my body would go number from head to toe and it would switch off and I had EXTREME fatigue- I would get off the school bus at 4:30pm and go straight to bed and wake up the following morning. it’s important to know symptoms vary greatly from patient to patient which often times makes it difficult to diagnose. It was about a month until I finally mentioned to my mom, who is a licensed nurse practitioner, my symptoms and we were on our way immediately to the ER.

I had bloodwork and catscans and MRIs but the defining moment and the true way to test for MS was a spinal tap. Which *graphic warning* is a needle that goes into the lower back between the spine to obtain spinal fluid. I was a little unlucky and received one a total of 3 times! Another tell tail sign are lesions on the brain/brain stem and/or spine. I like to describe lesions as blank space with no function which can inhibit the function of the area it “erased.” I have lesions on my brain- hence the name LESION QUEEN.

And there we have it, I was diagnosed with Relapsing Remitting Multiple Sclerosis (RRMS), there are many forms, and in my nonprofessional option – if I HAD to get MS- this is the kind I wanted to get.

RRMS means I could either be in remission and have my pretty basic symptoms of mild/moderate fatigue, come and go headaches -OR- I can relapse which I have many times.

Relapsing is when basic symptoms intensify OR new symptoms appear and often new lesions appear.

Through my blog I hope to provide hope to those individuals and their families being diagnosed and help them navigate MS

Topics to Include Anything From:

Cooking/Baking

Low Tox Lifestyle

Stress Management

Life Changes

I know every blogging guru is like “this is not your personal therapy session” and I don’t want it to be but I think these antidotes can be helpful to those diagnosed 🙂

I was diagnosed with MS at 17…I was half way through my senior year in highschool. I had planned to go for PreMed. I knew I didn’t want to stay in my home state, I had planned to go to Boston University. I fell in LOVE with the campus and most importantly I fell in love with the fact that it was an 8 hour drive from where I lived with my parents.

Well, I hate to tell you that dream was squashed once being diagnosed and I had to go to a local campus at Penn State. Of course Penn State is an amazing school but it wasn’t exactly the plan. But I’m here to tell you staying close to home was the best scenario with my MS. I was able to live on campus at least, which was less than 1 hour from home in case of emergency-and those emergencies did arise.

Remember, I was 17, I was a well behaved teenager; pretty shy. I never drank alcohol or did drugs in highschool. So, although I was diagnosed with MS- I did not treat my body as if I did.

For me, it was time to let loose and PARTAY!

I was in denial, which I’m here to tell you is NORMAL.

I chose to ignore my diagnosis, while taking daily injections for my MS, I didn’t sleep enough, I drank alcohol, and I didn’t manage my stress.

If you’re thinking “that’s not smart with your condition.” You’re right- and it definitely caught up to me in my sophomore year.

One day, while I was in microbiology I lost my small motor function and dexterity in my hands. I couldn’t hold the tool I needed to use for class. (We were inoculating specimens for our petri dishes to grow organisms). I couldn’t write, I couldn’t even do my makeup or my nails. I left class, called my dad and cried all the way back to my dorm room. The next morning, I woke up and couldn’t see out of my right eye-optic neuritis. Terrified, again, I call my mom and she takes me to the ER.

I had a relapse, my medication stopped working, I was put on a new one. Had 5 courses of plasmaphoresis- which is where they take your blood and filter it and put it back. After a month or so everything returned to my new MS “normal.”

Tips for the Newly Diagnosed Headed to College <3

-stay close to home and lean on your loved ones, you’re going to need the support

-get a private room! If you’re heat intolerant, like me, you’ll need a room with AC (not all of them have them)

-you can get an accommodations form from your neurologist

-if it’s not already a single room, you will likely have to fork the cost of how many people are supposed to be in that room

*my freshman year I had 2 roommates plus myself (not a good scenario when you require sleep), sophomore year I had one roommate half the year then paid for that roommate to have my own room, then the next 3 years I was able to score a single room and not have the added cost of covering another person*

-organize your life, the more organized you are, the less stressed you’ll become

-start slow with getting a planner and writing in appointments, classes, meals

-avoid/limit the things that don’t agree with MS; ie. alcohol, processed foods

-I know this is the pot calling the kettle black but I’m just telling you from experience, it definitely won’t be easy, but it will be worth it

-find your passions and don’t let the light dim out; you need things that will always bring you happiness even in the darkest of days

-SLEEP! SLEEP! SLEEP! Sleep is important for everyone but ESPECIALLY when you have MS. I would say 99% of the time I am getting at LEAST 8 hours

-manage your stress; this by far might be the hardest and this is one thing I’m constantly working on; it might seem simple -it’s not- but it will single handedly have the BIGGEST impact on your MS health

-get out those overactive thoughts getting you down whether it be a therapist, journaling or blogging, like me! 🙂

-stay active, keeping your body moving is so important to managing your disease process, but if you’re not a natural athlete (which I am not by any stretch of the imagination), you’ll want to do low impact activities like yoga/pilates/walking/light weight lifting because you’ll notice, muscle recovery is a whole other creature when you have MS

be kind to yourself,

LesionQueen

About Me :)

College planning with MS