The Anxiety of Healing

In the process of going through a diagnosis there are a lot of emotions that you go through.

Then you move onto the the treatment phase with even more emotions ... but what about in the healing stage.

In the past 7 or 8 months that I have found a sense of relief from my symptoms and I've began to experience a sense of normalcy in my day to day life.

This is good right?

Everyday I count my blessings, but there is also a dark side to healing.

For 10 years I have carried a little bag of anxiety around with me.

Daily, I would be reminded of it. I learned tactics to deal with that anxiety and part of that was changing my personality. I became less social, less willing to try new things, and basically found the comfort of my home to be safe.

Now I have been finding an urge to go outside of my comfort zone and push myself back to who I was 10 years ago - the fear of what that looks like, and what parts of "sick and scared Julie" come along with that has been on my mind. But the desire to live life to the fullest has be a strong emotion through the healing process.

As a fitness instructor I work with a lot of people who are "getting back to the gym after an injury" and they are in the healing process... feeling better but also struggling with not being in the same place they were before that injury.

I'm learning everyday that even though someone is healed... doesn't mean that there still isn't a long road ahead.

-j

I Was Built for Sunny Days

During the summer when I was little it was rare that you would find me by the TV or cooling off inside. I basically lived at the beach in the summer and as we got closer to the school year I was outside running with my neighborhood besties until the fireflies came out. 

The sun gave me energy and I loved feeling it on my skin.

About 2 years ago I started to realize that the sun, my antidepressant, started to turn against me. It was my Bachelorette weekend and we spent the day laying by the beach. As we all got up to move to the next adventure a sudden dizziness and loss of balance started to happen- I freaked out. This was about 3 weeks before I would get my official diagnosis of MS. 

People with MS can be thrown off by just one degree of temperature change. Some women will even feel more symptoms around their cycle because your body naturally get warmer. It doesn't mean that the disease is progressing or getting worse but it does aggravate what is already going on.

About this exact time last year we were in the middle of a heat wave. I got the dog ready for her normal walk, and we headed out the door... I made it around the block when I started to get the same feeling I did at the beach that day. We rushed home and I cooled off with an ice pack. About an hour later half my face went numb leading to my next flare up.

There was a common denominator-- the heat. 

I found myself staying inside, cancelling plans and getting down right anxious to be anywhere outside for too long. It killed me. 

As winter came to an end this year I was dreading anything that resembled the heat wave the year before... but something was different. I ended up going on a Disney trip with my family this year where avoiding the heat wasn't going to happen... although at times I fought through dizzy spells I overall felt good... I felt strong, I felt balanced.

So far this positive feeling has continued throughout the summer- I try to not put myself in super humid conditions but I'm also feeling well enough to lay outside and read a book- go kayaking with my dad- take a long walk with the pup on a warm summer night. Right now I'm sitting outside typing this in the middle of a warm summer Sunday.

Something is happening- and I feel like the medicine is working. Everything in moderation- and I'm learning to listen and understand what my body is doing and feeling. It helps to maintain the anxiety that comes along with any medical journey. 

Anyways, just wanted to give you all a quick update.. remember there is someone out there who can't -- so what are you doing? Get up try something new, challenge yourself, learn your body, find your limits. 

I'll be getting my next infusion in August... so until then - Cheers! 

Time Flies

I felt the need to write an update today- maybe it was the writing workshop I suffered through for the past 2 days, maybe it's because my next treatment is in 2 weeks... 2 WEEKS!

It's amazing how quickly time flies. It's been 6 months since I started my new treatment plan and now I'm ready to get the first full dose.

So how is it going?

Honestly, pretty well. About a month after my last treatment I started feeling really good. I had more energy, less numbness, NO dizziness (which was HUGE) ... and it's not just how I'm feeling... MY MRI's HAD NO NEW LESIONS!

A few weeks ago I felt some of my normal numbness sneak back in... in a strange way it is kind of a comforting numbness because it has been my normal for almost the past 9 years.

I remember the day exactly. It was St. Patricks day 2010 and I was out with my group of friends at the time. We had been drinking enjoying ourselves and I started to notice when I would look down at the ground my legs would go numb.

Strange? yes.

Concerning? not yet.

It could be anything... and honestly I didn't give it a second thought.

About a month later when my Primary Doctor was finishing up my exam, "was there anything else you wanted to talk about?" -- at first I answered "Nope! I think I'm all good... well... actually I've been having this weird sensation... I'm sure it's nothing...."

That's the strange thing about this disease. You spend your days trying to decide if what you are feeling is MS... or is it just life.

Am I fatigue right now because I'm tired, or is it because I have an autoimmune disease. Am I dizzy because I need water, or is it because I have an autoimmune disease.

These thoughts have the tendency to put you straight into a fit of anxiety.

As I get closer to my infusion more of my regular symptoms start to show up, not full blown, but just a quick little reminder that you still have this little disease.

This is normal. As your body starts to get stronger again symptoms come back.

The medicine itself is only in my system for a short time after the infusion, then it takes about 5-6 months for your immune system to build back up.... thats why the medicine is timed the way that it is.

I will get another knock to my system... another build back up... etc. The idea is to keep knocking my system down until it figures out how to do it's job properly... just a little micro management.

My mind is for sure in a different place than it was in August. I am actually looking forward to treatment day. I hope that it will give me a little boost to get back into some of the routines that I have dropped the past month as I let my body take the wheel for a bit.

As always thanks for the support, it means the world to me <3

** Photo from a trip to Atlanta this past month, I was super anxious about traveling it was my first trip in a while- I knew we would be walking a lot, standing in lines.. but to my surprise I was fine. Had to take more rests than normal, and took a few days to get back to my normal self when I returned- but I'm glad I didn't let my anxieties hold me back from enjoying life**

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.

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

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.