An Update

Today I have a little break from work so I figured that I'd take some time to let you all in on how I've been doing.

It's been about 3 months since I've had the infusion... which means I have 3 more months till my next one... and I'm actually looking forward to it!

I've been feeling wonderful. I wouldn't even say I've had any "off days" more like "off hours" where I need to just slow down and take a break.

My energy level has been fantastic, and I've even been able to add running back into my life (slowly, but I'm up to 2.5 miles walk/run). It's been very important to me to take advantage of this new found energy and positivity. Although I have always been active, it isn't always easy for me to convince myself to leave the couch and get out there and do stuff (I'm sure like most people)... recently my body wants to get up and get out there... it wants to be social, it wants to work hard, I don't have to convince it anymore... and I LOVE IT.

Another big thing that I've noticed is that I have more of a desire to do things with friends.

Even if I don't want to admit it, I got very anti-social during all of this. I wasn't sure how I would be feeling ... would I get out and then feel strange and want to go home.

My disease is invisible, and while most of my friends understand and don't judge me I was getting very tired of always have an excuse to stay in. Now my mind is craving interaction with others, and it's something that I didn't even know I was missing.

Each day I notice small things that make me think "man, was I this much 'off' before all of  this" - it's been an exciting way to re-discover who I am as a person.

I'll be interested to see how the next few months go, as most people say when you get closer to the infusion and the b-cells start to replenish you can start to feel worse again. Luckily I know that will be short-lived this time!

I can only hope that all of you head into this holiday season, with good health, happy thoughts, and lots of love. Be thankful for what you have and be sure to treasure all the small moments in life.

Much Love.

The Drug

I'm finally breathing a sigh of relief.

Relief that I have done all that I can do at this moment to better my health. 

Relief that I have gotten past the anxiety of starting something new. 

Relief that I am on the mend. 

So far the worst part about this journey has been the unknowns. The unknown of what is actually wrong with me, the tests, the results, the medicine.

I won't lie, I am an anxious person- and even taking something as simple as a Tylenol can make me second guess how my body will react. So when you are put in a situation with a drug that - according to my wonderful nurse - "most everyone will have an allergic reaction" you don't feel good.

2 weeks ago I went in for the first half dose of my medicine. The medicine is given in two half doses so that the body can adjust. 

Look here I am at my first infusion.

We were greeted by possibly one of the nicest nurses I have ever come in contact with. She immediately took my nerves down from "total freak out" to "okay I might freak out." As I sat down in the chair I actually started crying and laughing at the same time-- it was a pretty awesome sight. Once I calmed down (the nurse hugged me like 10 times) we were ready to go.

The drug is given to you by an IV and it can take 6+ hours to administer.

Before you get started you are given IV Steroids, Benadryl and Tylenol... okay great, so they are preparing you for something.... deep breath. 

The medicine is administered in slow doses that increase every 30 minutes. The fun part? Well knowing that the "allergic reaction" doesn't occur until about an hour and a half in... okay so i'll just sit here and wait.... for my throat to close. 

As I anxiously smiled around the room, made small talk with the nurses in the back of my head I kept wondering "WHAT THE HELL AM I DOING?! WILL THIS EVEN WORK? AM I EVEN SICK? IS THIS ALL IN MY HEAD" 

The minor meltdown kept my mind off of the hour and a half mark. Which came and went with no issues.

Lucky for me I was one of the odd balls (surprised?) that didn't actually react to the medicine. So after an hour observation I was sent on may way to relax through the weekend.

When I returned home I was pretty exhausted, weak and just not really "present" with the real world. This feeling lasted for about 5 days and then I started feeling back to myself.

The second dose was given to me last Friday. This time it went much smoother- less anxiety and a quicker bounce back time! 

I am currently 4 days out from my infusion and I'm already bouncing back quicker than round 1. 

Now it is a waiting game. 

I go back in February for my 2nd does (this one is given all at once). In the meantime I will have a MRI in November-ish to make sure nothing is progressing. 

The plan is for me to be on this medicine for at least 2 years. After the 2 year mark we will take a break and see how my body wants to repair itself.

The goal is that after the 2 years my b-cells (the ones that over-active and that we are killing off with the meds) will learn to grow back at an acceptable rate, and stop attacking my body and just do what they were intended for! 

So how am I feeling overall? 

I'll be honest, this summer was rough. I had new symptoms (dizzy, shaky, heavy legs, anxiety, numbness in my legs)- the heat has been BRUTAL.... the disease is active and I can feel it.

I will say I am hopeful. The week between my two infusions, felt good. I had energy, the numbness in my legs were back to tolerable and I felt an excitement of whats to come.

For now I get back to focusing on my diet and exercise (which is SOOOOO important with this disease --- even the days where my legs feel like 100 pounds each YOU HAVE TO MOVE! ) At this point I'm not actually sure what "normal" feels like, so I'll just say I'd like to feel better than I have this summer. 

Again, thanks for all the support for the past 2 weeks, If I could bottle up all of that love and put it in my IV- I bet I would be cured. 

<3 

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

It's Been A While

So the good news is I completely forgot to update this since I have been feeling so good recently!

I am just about to finish my 3rd month of the medicine and everything has been going great. 

When I first talked medication with my doctor he said to me: You will be so surprised at how bad you actually were feeling.. and he was right.

I had become so used to may daily "symptoms"-- Numb legs, feeling off balance, dizzy, a general brain fog all day... that I just assumed "This was your late 20s" and I pushed through. However after starting the medicine there a slight "clearing" so speak of this fog that was hanging over me. 

I still get some numbness, and I still often feel dizzy- but the fact that I can say "this is why I feel this way" keeps my mind at ease. 

Along with taking the medicine I have also tried to get back into a healthy lifestyle (because after the wedding I just went off a cliff) -- Starting in January I did my 3rd round of Whole30. (( I will be putting together a post about my Whole30 later since I get so many questions about it!)) I also started a 12 week fitness challenge in order to get me back into the gym! I'm feeling stronger and healthier by the day. 

A few stories that I'd like to share about different encounters.

I recently opened up to a few of the members that take my class at the gym about my MS. I was nervous about doing this because I didn't want them to think of me as a "lesser" or "not as strong" trainer. 

I had one individual come up to me after class to thank me for sharing my experience, since she too was battling an autoimmune disease and was trying to get herself back into the gym. She now comes to my class weekly.  

Another really cool thing that happened was that I was introduced to someone who was also going through the beginning stages of a MS diagnosis. We were able to swap stories, share our fears and hopes and just connect due to the fact that we both are going through the same thing. 

There is always good in the bad, and I like to live like that. 

One of my goals this year was to sign up for the MS walk in Baltimore. If you have any interest in donating, or walking please follow the link below.

http://main.nationalmssociety.org/goto/teamwigley