An update....

Really need to get better at updating.

So after a lot of thought and consideration I've decided to share my story ... Not that I think my life is THAT interesting... But my medical issues ARE. so, having said that, I have 2 upcoming surgeries:
1. I'm having a trial c2 area stimulator implanted in my head to try to ease my headaches. That's anytime from now to the summer, silly insurance.
2. I'm having gastric bypass mid April. ( to lose weight in hopes my intracranial hypertension can resolve, too lessen pressure on my subluxating and dislocating joints and back pain...) very exciting

I've also decided to talk about how cannabis helps me... Its been life changing.

I'm going to vlog my process and how this affects my symptoms and maladies. Does anyone have experience in this and have any advice.
There are exciting roads ahead and I am so amped for the journey!!!
Sometime I'm the next week or so. I'll start posting my journey.
I'll post links to any videos and such.
I'm sure I'll be using youtube, snapchat, instagram and Twitter... 😍

💜💜💜💜💜

I get a little absent minded...

I get absent minded, obviously. Its been... 3 months? 
The walk went great. Meaghen and I completed the 14+ miles around Boston (The entire walk route.) It rained. We still killed it. 
I raised just OVER my $1000 minimum. It was an emotional night, but well worth it all. I pushed myself emotionally and physically, and I couldn't have asked for a more amazing group of people to do it with. My hips started "slipping" around mile 10... the right one. Around mile 12ish, the left. I was miserable, but I refused to stop. It took me days to be able to touch my hips... the limping took over a month to subside. They still aren't "RIGHT" months later. 
Which reminds me... I started seeing a new PCP. She is recommending a Rheumatologist and a Physiotherapist for the Ehlers Danlos Syndrome, Fibro, subluxations, and to see if there is a chance of arthritis. (*sigh*) 
Onto the head demons... For the Chiari / Chronic Migraines / Occipital Neuralgia / Intracranial Hypertension: I've been seeing Dr Nardin at Cambridge Hospital. She is simply DEVINE and I adore her. I can't say enough good things about her. We're at 300mg of Topamax to treat the IH and Chronic Migraine. Occipital nerve blocks for the O.N. and Botox for the Chronic Migraine. I also have Migranal nasal spray as well as Zomig for break through migraines... (Which is still multiple times a week) ... 
Nothing is working for the IH / Pressure ... unfortunately. Or the constant body pain. 
I attempt to pacify myself with occasional doses of Tylenol or Motrin, but it does nothing. I find that if I smoke a bowl I do feel better. Seriously... It works wonders. I am going to be setting up an appointment to see a doctor to get my medical card by end of October. 

Ashy just started full day Kindergarten... world keeps on spinning...