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...

... There's been a car parked on my head ... for over a month?!

Ok, not REALLY, but it SURE feels that way. No matter how I describe it, there's been horrible pressure in my squash for over a month... and it's starting to wear me down.

I've talked to a few people who can't seem to wrap their minds around the fact that I've had a headache that feels like my head wants to explode for that long... but in all reality, I've had a headache for well over 10 (Yes, TEN) years straight. Crazy huh?

Here, I'll give you a headache run down... and let you live a day in my head and body...

For over 10 years I've had to wake up every single morning feeling like I've had a hangover, except I don't drink... and that headache never goes away. (on a scale of 1-10, its always somewhere between a 2-4) and I have it all day, just this dull, achy, hangovery, pissed off brain, hangover headache... and then I go to bed with it. Actually... That started just after I graduated highschool, which was 1999. So somewhere around 14-15years. Awesome huh?

Then I get my SUPER FUN body stopping, paralyzing, "fainting goat-esque" Chiari headaches. Let me describe these to you. These bad boys can just come out of no where, OR, they come because I'm doing something I shouldn't be *sarcasm*... like LAUGHING, sneezing, yawning, coughing, bending down to tie my shoe, picking up my daughter, lifting more than 1 gallon of milk at a time,... throwing up, (OVERSHARE TIME!) having sex, pooping... or doing anything that may cause straining... oh .. yelling at a concert. BAD IDEA.

Here's what it feels like: Take your hands and put them up and over the top of your head, so you're protecting your head with your forearms (like you're getting your ass kicked in a hockey fight) and your finger tips are resting in the little ridge on the back of your head)

I had to search for the perfect meaty head to display an occipital ridge for you properly. I hope you're all happy. Sorry mister in the picture from google. NOW, Imagine that you're fingers are realllly firmly dug into that ridge area on the back of your head. BETTER YET! IMAGINE A GIANT HAS DUG HIS FINGERS INTO IT! Now, imagine that giant slowly peeling the skin, and muscle off of your head from that ridge, back over the top of your head, back to your eyebrows, like your a big meaty human orange. Don't throw up... You cant, because not only do you experience this pain, but at the SAME exact time you feel this, your cerebellum is being squished by your skull and C1 Vertebrae and cerebral spinal fluid isn't moving, so you're sort of paralyzed for anywhere from 20 seconds to 2 minutes. ... (This is why I had my Chiari Decompression Surgery.)

But this decompression didn't completely stop the headaches, it just reduced the frequency, from around 30-40 of these headaches a day, to about 3-10ish...

AND THEN...
I still have migraines...
more often now than before... oh joy of joys.




and then Lastly now I have the Intracranial Pressure headaches. The ones that feel like there is a car parked on top of my head...

So, to kind of feel what this feels like, Close your eyes... well, not now, because then you can't read, so READ all of this, and then do it. I'll tell you when you can close your eyes. Take your hands and cup them over both ears so that everything sounds REAL muffled., and then PUSH on the sides of your head as HARD as possible. Now, tuck your chin in toward your chest, and pull your neck back toward your spine at the same time so that there is a very tense and uncomfortable pressure in the back of your head and neck, as well as clench your jaw.... now puff out your cheeks so they are as full of air as you can make them. NOW close your eyes as tight as possible. Hold that all for as long as you can. Go ahead, I'll wait. Feels RIDICULOUSLY uncomfortable, right? Like there is pain, pressure, discomfort... all rolled into one big crap ball?? TADA! That's pretty much the feeling I've had every day for the last month+... but add onto that the feeling of my pulse in my ears and behind my eyes... and sometimes IN my teeth. Its enough to drive you batshit.



I don't want anyone's sympathy....That's not what this was about. To those of you who have asked, THAT is what I have been living with, day in and day out. I appreciate your concern. Everyone who's said, suck it up, it's "just a headache" can kiss the most rotund area on my posterior. I'll mark it with a big red X. :-)

I hope this has been enlightening for all of you, and I appreciate you all taking the time to read!!!