Keeping Positive.

So many people say to me "You're so positive!' - "You're an inspiration!"...which is very flattering and I do try to live my life in the most positive mindset that I can, because why focus on all the negatives when there is so much to live for? 

But I do need to be honest, not all days are rainbows and unicorns and well frankly, a lot of the time it's a mask that I wear that says "look, I'm not sick- sad or scared, i'm happy, excited and strong!!" 

The past few weeks have been a little rough, not having my normal energy, dealing with some vision issues, and frankly just getting frustrated knowing that I am mentally able to do things, but physically my body has been shutting down... and well, it's a downer. 

Now I don't say this to get sympathy, but I also don't want to sugarcoat what having an auto-immune disease looks like. A lot of the times when I share things I show the positives and the growth, but it's worth it to take a minute and feel the stuff that scares you. 

I am a healthy individual and most of my "symptoms" could be met with "Oh, well I've had that before" or "Maybe you just need to drink more water"  but the reality of it is that every little symptom that I feel needs to be noted... is this new? is this different? should I tell my doctor? does this mean it's progressing? am I just tired? stressed? ... the list goes on, and it's exhausting. 

I've done a really good job keeping all of those thoughts in my head, laughing off the tingling in my legs, the dizziness I feel daily "oh maybe I should stop drinking all that coffee!! LOLLOL" It's a job in itself to keep the scary thoughts where they belong... in the back of my head. 

There is something to be said about always being positive, you never deal with the negatives - you learn to numb (no MS pun intended here) yourself to anything that might be hard to deal with. 

In the first week of October I will be going in for some scans and tests (thought I was going to get away with no testing this year.... but that was a lie) Here's a picture of Verona and I waiting for the doctor today. 

I also want to share a book that I just finished called "29 Gifts: How a Month of Giving Can Change your Life" It was a really good read on an interesting way to change your mindset on things. The woman who wrote the book was diagnosed with MS and was really down on herself about the whole ordeal. A friend of hers suggested that she gives 29 gifts in 29 days. She learns the act of giving, along with the act of receiving and how simple thing can change your entire outlook on the world. 

I'm lucky in that I was naturally given the glass half full mentality (Thanks Mom and Dad) its what keeps me strong and not a basket case... but i'm also learning that it's okay to let your guard down sometimes. You only get stronger if you deal with the hard stuff. 

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

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.

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