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**