A Change

It hasn't been too long since we last talked, and actually about a day after my last post I hit a little bit of a speed bump.

After the extremely hot weather I was still feeling off, wasn't regaining energy and overall just felt wiped out, but that's what the disease does. The heat can bring all of these phantom symptoms out, and it's not necessarily a relapse.

My issue was about halfway through the week I had a new symptom, and new symptoms are what you raise the red flag for. A new symptom means that the disease is still active.

Here's the thing with MS- a lot of the symptoms that you experience can be confused as everyday issues, so it's usually very hard to say "I'm having a flare up" - I actually didn't even knew what "having a flare up" would feel like, or what to expect, since i'm pretty sure this is the first one since I started this fun journey (that's a good thing!!)

This was different. The right side of my mouth was numb, almost like I had left the dentist. Instead of the feeling wearing off after a few hours it stuck around for a week.

Although it didn't interrupt my day, and I'm pretty sure no one actually knew it was happening, it still was enough cause me to email my doctor.

The next day they saw me, and confirmed I was indeed having a flare.

Great.

The next day I was in an MRI machine (my 3rd one since the spring) and the consensus was made to switch up the meds.

SIDE STORYThe last two MRI's I have received have been through a research program. They are looking to see if using glucose instead of contrast dye is as effective or more effective in showing lesion activity in MS patients. Since I got to go back earlier than expected the lovely team there informed me that my last MRI was actually used in a presentation to show that their findings are working! This is a little bit of a silver lining in all of this. It's nice to know that I have a small part in making a difference to medicine for future MS patients! 

So we are back to where we started. We are going to start on a IV treatment- starting next week!
The drug is called Ocrevus and it is one of the newer drugs on the market that are supposed to have great results.

It's a little more intense than the drug I was on before. This drug will be knocking out the B-Cells in my immune system. The B-Cell is the cell that is responsible for producing antibodies. The drug is administered via IV. The first round will be given in two doses and then after that it will be every six months! (which is WAY better than a pill every day!)

Although i'm nervous to start something new, I'm actually very optimistic. I was feeling better on the drug they started me on, but still wasn't back to 100%... and that was probably because something was still brewing in my system. I kind of just told myself that this "feeling okay" must just be my baseline.

I'm starting to believe that I can get even better then where I was, and that is my goal.

This more aggressive approach will (fingers crossed) let me rebuild my immune system from scratch and hopefully my body decides it wants to function like a normal person again.

Other than the little flare I have been feeling good, optimistic, hopeful, all the positive things. I have been keeping up my workouts (which is really important to me and my doctors) keeping up the healthy eating (I ended up breaking my whole30 20 days in... which is OK! My body was telling me what I needed- my goal now is to eat paleo as often as I can! ) -- the biggest thing I've learned is to keep moving, keep your head up and know that there is always someone else out there that is dealing with something way worse than you.

I'll be in touch after my treatment.

<3

Dog Days of Summer

Oh Hello.

It's actually a good sign that you haven't heard from me in a while, as I have been feeling pretty decent. The medicine is doing it's thing with minimal side effects. What more could a girl ask for?

Back in April I attended the MS Walk in Baltimore with some amazing people by my side.

It was a cold April day, unlike today, but we walked the 3 miles to show our support of the MS Society and what they do daily for people living with MS.

After the walk I had my yearly MRI and checkup, which showed a slight progression with the disease- however since nothing clinically has changed we are keeping the course, just changing my yearly checkup to a 6 month check up.

I am okay with this.

This small progression led me to join a research study which is looking at the effects of glucose in a MRI study instead of the normal contrast dye. It's pretty interesting to be a part of what could change the whole course of the MRI process, and from what I could tell the glucose did play a part in confirming the progression.  (this is the cliff note version of this experience)

I am in good hands.

In the past few months I have tried to push myself and one of those accomplishments happened when I took on the Hart-Miller Island 5 Miler. After signing up I immediately regretted my decision.

What if it was too hot?

What if I came in last place?

What if I had to be picked up in the golf cart?

I swallowed all of these fears and completed the race (not in last place) I ran about 1.5 miles, and walked the rest of the way. I made a friend a long the way who was also walking, we bonded, and I knew that I was there for a reason. Although 8 years ago I would have run the whole thing- I have learned how far I can push myself.

This journey has taught me to throw out the what ifs... (or at lease try to) it has taught me to listen to my body (although I try to fight it) it has taught me to value my friendships (I mean look how many people showed up to walk in the freezing cold with me) and it has taught me to enjoy the moments (even if I have to sit in the AC instead of by the pool today- not bitter at all)

<3