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. 

Regulating Your Temperature

Even the slightest change in temperature can cause those of us with MS to have a flare up... specifically heat.

So as you can imagine summer is a fun time. I've talked about this before...either my face goes numb (cool) or it feels like I'm walking through quicksand (cool) - and most recently my calf or my toes will go completely numb... either way my body sends off signals to myself that says "I'M NOT OKAY" - it's taken a lot of time for me to swallow my pride and give into the "I'M NOT OKAY SIT DOWN" mentality- it used to be, "YOU'RE FINE, KEEP GOING."

I'm starting to realize that my MS was teaching me something- it was teaching me to listen to my body when it was screaming at me - if I was too hot I would need to stop, regulate my temperature and THEN go about my day.

Being in the quarantine was kind of like my legs going numb... at first I fought it... I pushed myself to start a diet, a workout, every house project I could think of...MUST. STAY. BUSY.

Just like my MS, my body started to react - I wasn't sleeping well, my acne decided to return with all it's glory, my eye was twitching EVERYDAY-- my body was telling me to stop. It wanted me to regulate my temperature to this new environment, and give myself some time to breathe, reflect and learn.

All throughout my life I moved a mile a minute, if i was sitting down - I was being lazy. Mastering the art of relaxation was something that I didn't even think I needed as a skill.

Hardships in life are meant to teach you lessons. Having an auto-immune disease has taught me a lot. Listen to your body, take time to learn about it, what it likes and doesn't like- it's probably trying to tell you something.

Sunset over Downtown Baltimore 

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!