Saturday, July 8, 2017

Did Somebody Just Say Cake? Seriously, I'm hungry.

Okay I'm back.

My more positive than not positive self.

I wanted to crawl in a hole and never come out after getting off 2+ years of antibiotics and relapsing right away. Yet again, the only thing that was left for me to do was to just keep going.  My need for normalcy and relief enable me to keep searching for answers to my symptoms even when it seems like I'm in the boxing ring with the heavy weight champion of the world.

I have a complete different perspective of this disease strictly because of what happened to me over the course of the last few months.  It is truly amazing in a good and bad and wonderful way.  The reason for my change of perspective is because of my Canadian doctor.  I see or talk on the phone with him for 15 min every 5 weeks or so.  He makes treatment affordable for me and has changed the way I view this disease. He treats differently.  Had I gone back to my Seattle doctor after relapsing I would have gotten pumped right back up on dinosaur amounts of antibiotics and would never have gotten the answers I now have. Ohhhhhhh it's all so unbelievably complex I could throw something. How and if it falls into place is a mysterious and amazing thing.  All I can say, if you are still fighting is to keep asking yourself questions, and never give up on finding the answers. I'll say that until I die.  Question every single symptom.  Put yourself out there in the universe.  If I had not chosen to do a short 30 second video for a fellow Lymie I would never have gotten in contact with Nicole, another Lymie who introduced me to my new doctor.  She happened to see me on a Lyme video floating around facebook and realized we were neighbors in the same city.  I'd be so screwed had that moment never happened.  I was financially tapped and could not return to my Seattle doctor regardless.

Here's that video I mentioned

I'll give you an update further along in this blog on my treatment but I want to get going on some of my accomplishments over the last few months because sometimes I forget to look at how far I've come! Even though Lyme symptoms crept in hard about a month and half ago I am functioning the best I have in 8 years.  In November of 2014 I was just trying to survive.  Today I am beginning to flourish and I can feel it.

For Shania Twain life is finally about to get good after getting treatment for Lyme disease...Maybe mine is too?


First off, I got a new job!  My new job is in health of course.  It's challenging, there are looooong hours and I've learned LOTS of new information but I've caught on and I'm surviving.  It was even acknowledged in a meeting how fast I picked up on things and how grateful the company is for that. Three years ago I was struggling to speak, I could not read, and just my cognitive symptoms alone plagued me enough to make me question if I would ever be able to function in the world let alone take on new responsibilities.  Right up to the day I took this position I feared my bodies ability to pull it off.  And I did it!  

  So. much. progress.


I left everything I knew over the last 10 years and moved to a new city.  It's fabulous and new and larger than the last one.  I'm still getting broken in, but I love it so far.


The girl who never wanted to get married and feared she might never find love again found love in the most unexpected place and got engaged.  I remember fearing nobody would love me again after my last long term relationship ended. I was sick and tired and 7 years older. I was 3 months into treatment and remember thinking, why would anybody want to get involved with this, looking down at my insanely symptomatic body.  In hindsight, there has been nothing yet more monumental than being a single women, defender of your own body.  You become super human and super empowered.

Sickness opens your eyes, the struggle helps to identify what to see, and the strength emanates; Allowing you freedom.


I'm still going.  I am still fighting for my health after almost 8 years.  With so many ups and downs.  With so many medical bills and pills.  I refuse to stop until I get where I want to be.

The perseverance will pay off.


Lastly and thankfully, I can be 100% confident that my muscle pain in my neck and back was due to MCAS and all the triggers that came with it.  Wow, to date that was the most challenging symptom to figure out for myself and doctors.  Since upping my dosage of Cromolyn Sodium I have been PAIN FREE in the neck and upper back area and it happened immediately.  That pain interrupted nearly every day of my life for 8 years.  There were so many days where it was all I could think about because it was always just there, even in my nightmares.

Quick health recap:

My getting diagnosed with MCAS has changed my life. After my relapse I went to speak to my LL in person.  He calmly suggested we up the dosage of Cromolyn Sodium and wait to see what happens for the next two months during my typical flair weeks prior to my menstrual cycle. WAIT TO SEE?!  My first thought was panic as my last LL doctor would have loaded me up on antibiotics.  That day I decided I had no other option than to trust him and let him be my doctor. After having been my own doctor for all those years it's something I struggle with; Lack of trust in the medical field, even the special ones who treat Lyme, but who can blame me?  I'll know more about the status of my immune system soon but so far there has been a turn for the better and his plan just may be panning out for me.

Lets enjoy our good days.

Thanks for reading
P.S.  I got an amazing offer, a Lyme disease patients dream.  Something that was meant for me.  Fate.  I can't talk about it yet, maybe next time ;)