Update from Arizona!

My mom and I living it up on the way to Arizona!
The exclamation point may have been a bit much because so far things have been moving but not super fast and i’m still not super positive yet.
I’ve been very foggy so it’s been really hard for me to connect with Dr. Ortle because he uses a lot of science terms that I cannot remember.

But I do understand that certain anti depressants and anxiety meds may not work on me because of the way i’m wired. And Dan is GREAT! Hes so nice and really welcoming (his words are easier to understand lol). Although I wouldn’t say I’m comfortable yet.. which of course is expected.

But it is beautiful; absolutely stunning here. I can’t get enough of the mountains and cactus! And the weather?! Gorgeous! A little cooler than we expected but honestly that’s the way i like it 🙂

This is a picture of my very first Arizona sunset –

SO here is my upcoming schedule, Monday I get my first ketamine treatment for pain; Tuesday I start antibiotics on a regular IV; Thursday I get my port.

That’s a busy week, I’ll check in so you know you i’ve lived!

*Gentle Hugs*

In 12.5 hours

 

I am leaving my childhood home to live in Arizona for 4-5 months and go to a clinic that is supposedly going to increase my livelihood.

Right now, I feel like I am having a heart attack, panic attack, seizure, and dying all at once. I know this is my only choice I’m just honestly going to log my journey. And this is almost day one and I couldn’t be more scared and skeptical.

And yes, I do have a gap in my front teeth. It just appeared in the past year, awesome I know.

I’m terrified of planes.. every change in elevation feels like a roller coaster.

Also since I can’t bring marijuana on the plane, when we arrive I will have to spend all night herxing from having no access. Hopefully not but I don’t have the best luck.

And it’s going to be warm.. hot even!? Who would want that in december?
I can’t mentally wrap my head around what clothes to wear. And i’m a cold weather person!
It definitely doesn’t help having brain fog.

I just want this to be over.

Captains Log; not even day one.

Medical Marijuana Helps!

Now here’s an controversial post…

Since I first became sick, I knew this plant was one of the only ways I could get relief.
Yes most of us try Marijuana in college and I did too, but I started to realize it helped my migraines, cramps, hang-overs, anxiety and depression.
Little did I know a whole new world was about to open up to me.

When I became too sick, I had to move home. At first this was a big problem considering my way of medicating is still illegal, but eventually, my parents realized what I had. IT HELPS!!
Yes my parents did A LOT of research before they were really on board, but now we know, Marijuana, or magic medicine as we call it, really does help ALL of my symptoms!

Now of course legality is an issue, I just wish the government could hear all of our stories and see how much benefit we get from this harmless plant!
And no, I have never tried any harder drugs, and nor do I ever need too, Marijuana is all the help I will ever need. (besides antibiotics of course)
Cannabis, especially the CO oil, has even been studied to kill the bacteria from Lyme Disease – For more information

Making Marijuana legal could heal millions of people. Imagine getting the right strains for your symptoms? While I’m in Arizona for treatment, I will get a temporary card and will finally be able to experience true relief is my belief. Hopefully I will have amazing results to share will ya’ll.

If you live in a legal state, I would highly recommend at least trying it, you never know how helpful it could be! 

Everyone has a Story

Once Upon a Time

A girl got sick for 7 years before being diagnosed with Lyme Disease, Babesia, and Bartonella infections.

I got a migraine that lasted for 1 & 1/2 years during my senior year of highschool. I missed alot of school but eventually it moved to just chronic migraines and I was able to go to College.
After 2 years of college, I started to get flares of illness – fever, headache, nausea, vomiting, fatigue and anxiety. For awhile I just brushed it off, getting diagnosed with Bi Polar Depression and Anxiety disorder in the process.
I thought I was just having troubles with my mental state and my medications.. then things got worse.

My legs started to shake going downstairs which soon became noticeable, especially if there were no hand rails. And my dizziness began, I couldn’t go up stairs without the world spinning around me. Everything was falling apart and I had no idea why.. I stayed in bed alot, had to go home early from parties, and frequently missed out on outings with friends.
The only way I managed to pass classes was literally by crying to my professors.. professional right??

Then my symptoms came to a head about 2 years ago, I had a seizure at work and that finally got me some attention!
I started going to dr after dr with a going total of 25 (which happens to be my age… hah).
I actually went to body talk and was told horrible stories about the poor souls of raped and murdered girls that clung to my soul… um help?
Finally I had to drop out of school, I just couldn’t learn anymore.. it was like I was trapped in a clear jello with no way of pushing through to the words.
So i decided to focus only on getting better, I rested, went to different doctors and got many diagnoses.
All of which I’m sure I have in some way or another.. you know how confusing everything is.. mainly Fibromyalgia, ME/CFS, POTS and Dysautonomia. Although I’ve been told I have those AND Lyme and co infections.. *Head Blown* but nobody told me I had a chance to get better, for a while i was hopeless feeling as though my life was over forever.. that there would be nothing but pain, sleepless nights, anxiety, loneliness etc.. thats when my friends began to disappear.. I was told “Your not that sick” “Just be positive and do something!” and “Just get more excercise!” oh how fun that was, watching my shallow world of fake friends crash around me. At the time, I didn’t realize it was for the better.

But I just kept getting sicker and went from home bound to bedridden. I had a supportive, live in boyfriend but while he was at work, my health suffered. It was more than he could handle as he ended up dumping me because I couldn’t work, visit him, do anything, or have sex.. which of course are the building blocks of relationships..
I had to move in with my parents.. at 25 I had to leave the life I had for years and come back to my childhood. My parents take care of me and help me with everything.. its humbling, horrible, and sometimes fun 🙂
I didn’t see that at first.. but of course I kept getting sicker..
We tried everything, starting with a sort of natural doctor who also used regular drugs but put me on a super strict diet and handfulls of supplements that made me feel like I wasn’t just dying, already dead but stuck feeling everything.. promises were made and broken, time lines thrown out, doctors changing right and left.. the year was a blur.

Finally my parents and I found a doctor to get the right  tests for Lyme and co infections through Galaxy and Igenex NOT labcorp!  Then my Lyme came back indeterminate (sometimes means positive) Bartonella had high antibodies, and Babesia was active in my blood smear! FINALLY SOME ANSWERS!!!!!!!! If you don’t know what that feels like I hope you do very soon 🙂
Those results gave me some hope, I know this is going to be hard but I have some hope that I may get better. Its just going to be a long hard road..

if you feel like your going to die every day, you may have a chronic illness..

So here I am on the Lyme Disease path after so many years and let me tell you this path is NO FUN!
Thus far I have done 3 months on Doxy, Coartum, Azithrimicin, and Tinidazole those were too hard on me, i tried refampin next and actually noticed a difference! Until my stomach started to feel like it wanted to rip itself from my body.
So I’ve been taking a break waiting to get IV abx set up which is getting delayed by my normal lyme doc due to stupid laws down here in North Carolina.
But I will try to keep it positive even if I have to vent sometimes 🙂

Thank you so much for taking the time to read my story!

Hello Blogiverse!

I am just a Spoonie looking to find my place in this new world of sickness and coping and hell!

I will be critiquing everything from the eyes of a chronically ill person, especially those in wheel chairs!
I just hope that my words, and experiences can help at least one other person on this horrible road.

If your a Spoonie, check out my blog and get some comfort, a laugh, a tip, maybe even some help.

PS: Don’t know what a “Spoonie” is? Check out The Spoon Theory by Christine Miserando

Gentle Hugs to all!

• Carly