2 Weeks In...

Just wanted to catch you all up on what has been going on.

On November 13th I started my medicine to get ahead of this thing called Multiple Sclerosis. I started this medicine as a half dose for one week leading up to a full dose the second week. 

The anxiety leading up to actually taking the pill was WAY worse than what actually happened. (which tends to be for most things in my life)

The first week I experienced slight flushing in my cheeks. The flushing would start about 90 minutes after I took my medicine and then it would subside after about 1 hour. (this is completely normal)

After going up the the higher dose I experienced pretty intense flushing over my whole entire body. It basically looked like I laid out on the beach for about 8 hours with no sunscreen. This also only lasted for about an hour. 

After a few adjustments (adding in a Aspirin for the flushing and a Zantac for very mild stomach issues) I felt back on track- and quickly back on track, I couldn't ask for anymore more than that! 

If you want an idea of what the flushing looked like on the worst day, here is a terrible selfie. 

The first one was about an hour after I took the medicine (slight flushing), and the second one was about 90 minutes after... 

Now it is way to early to say that "WOW! I am feeling great, must be the medicine!" but I can say that there is a strange fog that has been lifted off of me ---- maybe it was the unknown that was lurking in my mind.

So what are the next steps... in about two weeks I will go in for blood work to make sure everything is working out just fine with the medicine. This will end up being a regular occurrence as they are tracking to make sure nothing gets out of whack.

The next thing on my agenda is getting back into my workout routine. After the wedding, the diagnosis, the medication, I did something I told myself I would never do. I took a break... and boy do I feel it. The medicine itself does cause some bloating, but it also requires that you eat with it in order to not feel the side effects... and I might have taken that a little too far (to be on the safe side!) but now it's time to find a balance. 

The Medicine

Well it's official. I have a treatment plan, it arrived in the mail (after a few hiccups with insurance), and I am ready to get started. 

Are you confused? Catch up HERE

Right after my diagnosis we decided to start a new drug that would be administered by IV every six months. 

This drug is made to suppress the immune system... it is new, with lots of promise for an easy, effective treatment. 

I set up my infusions for a couple weeks after the wedding. I talked myself off the crazy train of "what ifs" and was ready to go.

This was abruptly stopped as my doctor decided he wanted to wait till the drug had been on the market a little bit longer -- and decided to switch me to a daily pill called Tecfidera. 

I'm going to try to explain the way that this new drug works using the words of my father:

Your body has an immune system. 

This immune system is basically a little army with weapons that fight diseases.... my body's army is a little over zealous, fights off the bad guys, but then goes a step further and attacks the healthy cells. 

My body has decided that my spinal cord is no good... it has been eating away at my myelin- the stuff that protects your nerves. 

This damage to my myelin is what causes my legs to go numb... originally there was only one area they were attacking.. and over the years they had seem to stop. With the most recent MRI there was another spot detected.. which means the army is still working a little too hard.

We need to disarm the army... ever so slightly. 

We still want them to fight, but maybe just take it down a notch. 

This drug (the daily pill) helps to decrease the weapons... I will still have a healthy immune system, but they won't be able to fight as hard. 

You might be thinking- wait... didn't the IV treatment do the same thing? 

Well no, the IV treatment would have attacked the army itself, weakening the whole operation.

While I'm not thrilled to add in a daily pill two times a day to my routine, I am excited to finally make some moves instead of just waiting for things to happen. 

This is all a positive step in the right direction, and I am looking forward to finally getting started! 

The Start

Over 7 years ago, I bumped my head pretty badly....coincidentally at the same time I started experiencing numbness in my legs. Originally I shook this off as a cool party trick and went about my day. 

After a few weeks of numbness I finally mentioned something to my Primary Care doctor who sent me on a journey through doctors and tests. 

(This picture below was taken right before I got a call from the doctor letting me know they found something on my scans.. I was on my way to a girls trip at the beach telling them all about the MRI I just had.) 

I was originally diagnosed with an autoimmune disease called Transverse Myelitis and started to mentally prepare myself for what could happen down the road.

In August I went in for my yearly MRI expecting the same news that I have received in the past (no news) but a new lesion had appeared on my scans. 

So instead of having one lesion I now had multiple.. get it? Multiple Sclerosis.

The next thing I knew we were talking treatment plans and next steps. 

What is MS? In the simplest terms: MS is an autoimmune disease where your body works too hard. My immune system goes above and beyond its normal duties and starts to attack things like my nervous system- ya know the things you need. (I always was an over achiever) 

This disease is tricky and can present itself in many different forms- vision issues, balance and coordination, numbness, difficultly walking-- the list goes on. 

I fall in the high functioning very early stages of MS---to the naked eye I am a normal functioning 30 year old.

Throughout the past 7 years I have dedicated myself to getting healthy and strong. I wanted to make sure that I was in the best shape if things were to take a turn for the worst. 

Shortly after this diagnosis I had to put things on the back burner as I was less than a month away from my wedding day. 

So much was happening and there was little time to be sad about things that I could not control. The day I went to the doctor, I took off from work, gave myself 24 hours to feel bad for myself and then kicked everything into high gear as it was time to kick some butt. 

Welcome

If you have found yourself here I wanted to introduce myself and the reasons behind this blog.

I wanted to start this blog after my diagnosis with Multiple Sclerosis.

It is a way for me to document my journey for myself and anyone else that might be interested.

I want to be as transparent as possible... as it has helped me tremendously as I looked for stories similar to mine in such an unknown world.

I'll be talking about my experience with MS, but also documenting other life adventures along the way.

I hope you will join me.