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... 😍

💜💜💜💜💜

Cha-cha-cha-changesssss

1. I suck at blogging.

2. Life. Ugh.

So in the past few months my body has continued to revolt against me, and I've decided to grab my health by the balls and get shit under control...

I've come off almost all my medication. ( no more Topamax, no muscle relaxers, greatly reducing the number of oral tablets taken daily.
I'm still on Prozac (40mg once a day), and Prilosec... but that's really it for prophylactic meds.
I'm getting Botox every 3months for migraines (31 shots in my head, Face and neck) and I was getting occipital nerve blocks but we're paying them out (against my wishes), because I'm going to be getting a C2 area occipital nerve simulator implanted. (google it, weird shit... Just a step closer to being bionic )

Most of what I take now is vitamins and supplements. Multis, magnesium ( said to help reduce migraines), D3 ( I'm wicked deficient), calcium, B-complex ( good for migraines) N-Acetylcholine (helps OCD/anxiety / depression) ....
I still have break through meds for my chronic migraines. Zomig or Migranal. I try not to use them often...
I was given meds for nausea and I hate them. I don't take them.

What I HAVE found helps is cannabis.
I really enjoy Indicas and Indica dominant hybrids. They seem to help my body pain, migraine symptoms, insomnia, and depression/anxiety... Oh and the IBS awesomeness is GREATLY  HELPED.
I'm learning to make edibles and oils so I can make capsules, topicals and treats. The longer duration after ingestion is a really great benefit and it helps keep my passions under control.

I actually have an oil infusing with herb in my crock pot right now. :-) day 2. It will be ready tonight. I'm excited because this is my third time making oil and this one looks AMAZING. Coconut oil, cannabis, lecithin...

That was in a cooled phase... So pretty....

Hopefully I'll be sampling it later tonight. Fingers crossed!!!

 Stay funky my chickens.

it is what it is

... Ever just feel like if you don't get the things inside your head OUT,  you'll have a break down? I feel like that's where I'm headed. 
I've had a migraine since Friday night. I can't get the pressure pain under control either. It's been at a 10/10 on the pain scale. Between Zomig, Caffeine, Ibuprofen, Tylenol, icepacks, essential oils and laying down I've managed to get it down to n 8/10. (essentially means I've stopped drooling and I can tolerate light and sounds again a bit)...
take a
I pretty much live my life at a constant 5/10 on the pain scale. I don't know what it's like to not be in pain anymore. It's really sad. I even said recently that if I woke up tomorrow and I wasn't in pain at ALL, I would immediately go to the hospital, because I would fear that something was horribly wrong. That is NOT a normal reaction to being painfree. 

I feel like I am mourning the life I used to live a lot more lately. I miss things I used to do with ease and with out issue.
I sat in my car and cried today because I had to drive home from the college after picking up a book and I just didn't have the strength or energy to do so, but I HAD to. (It's only Danvers to Everett!)
Holding my book and a few other items the bookstore my shoulder popped and then like a slinky just kind of slinked out of socket and I almost dropped all of my items onto the floor. Apparently my shoulder decided that a small book, a notebook, 2 highlighters and a pack of pens were beyond me to hold! I had to pop it back in at the counter. Murderous, rampaging pain. (Awesome looks too) 

My SSDI claim was denied again. My initial and application for reconsideration, both denied. I listed everything wrong, gave all my doctors information, all my treatment info, and was pretty much told to shove off. So now my lawyer has to file an appeal to go before a judge. As if I'm not depressed and anxious enough. bleh. Thankfully the lawyer handles all this shit, because I can't deal with it. 

I have all sorts of Disability Accommodation forms for school I need filled out asap too. I need to get my Neurologist and PCP to fill them out and then take care of what ever the next steps are asap. (My classes are all online this semester, since I can't handle the stress of the commute or sitting in classes. At least online, I can lay down, do them intermittently if/as I feel up to it.... If I get an insomnia burst at 3am, I can do work laying on the couch, or when ever... it's still less than ideal, but it's worked for me. I just need that safety net, since I struggle with deadlines and not feeling well)

I think the hardest part in all this is not being an amazing mom like I want to be. I never had plans in life to be a mommy... and then BAM, I wanted to be a mommy. I had hoped I'd be this kickass mom. But now I spend most of my time sick/sore/ill. I don't want all of Ashlyn's memories of my to be how sick I am/was, or that I wasn't fun enough. I want her to have memories of me being an awesome mom and of all the fun we had. I try my best to do everything for her, and hold it together, and then I crumble and fall apart once she is in bed (or at school). I just can't predict when my body is going to want to crap out on me. 

*sigh*

it is what it is. Bitching about it won't make it any better. I just keep telling myself that. I woke up this morning, so I should be golden. ... I just want one day when everything is easy/perfect. just one. (and for all my lovies to have the same thing... one easy/perfect/peaceful day... )
Is that too much to ask?

... humbling mumblings.

I had a delightful chat with the 11 year old girl across the street today. She is SO wise beyond her years, and I LOVE talking to her. (She comes out when her little brother comes out to play with Ashy and the girls. She loves to sit on the stairs and talk to me about "tween stuff" while they run around)

I was doing some discussion board/introduction homework and she was telling me about he homework and classmates. She wants to be a doctor, and she knows she has at least 8 additional years of full time college, and she's excited for it. She loves math and science. She's such a smart and polite spitfire. She was asking me what I had wanted to be when I was a kid, and what I want to do now... 

So I told her the truth:
I don't know what I want to be when I grow up.
I'm 33 years old and I have no career path or mindset for a job (or if I'll really be working one in the near future) 

When I was filling out my enrollment application for the Voke, I wanted to either do Architectural Drafting, Commercial Artistry or Cosmetology ... I chose Welding. I didnt follow it as a career, I ended up in Customer Service.
I never went to college.
I always wanted to be a tattoo artist, and then I wanted my degree in Art History. I never followed up on getting an apprenticeship because I was too shy, too afraid of rejection, or too high. 

I finally find happiness and start following some dreams, and taking steps to DO what I want.

and then BAM, my body and brain decided to start revolting against me.  In less than 10 years I've been diagnosed with all sorts of crap, had a bunch of surgeries, given up things I've loved... It breaks my heart. I fight and fight for things, and I feel like its all in vain.

I want my degree. I know its ONLY a Liberal Arts Associates degree, and everyone's like, That's stupid, its a waste degree, but DAMN IT, I'm busting my ass for it, just like I did for my Substance Abuse Certificate. 

I try to fight through my pain, and find a way to do what I want... but I barely have the energy to get through the "What I NEED to do" things. I have to take care of Ashlyn, I have to help try to run a house hold. I have to remember to eat and take care of myself. Beyond that, everything is secondary. 

It's just hard and frustrating to watch everything you've every wanted, and everything you've worked for be ripped from your aching hands. I don't see the same person in the mirror I once saw, and it breaks my heart. I would give anything to have myself by for 48 hours, just to muscle thru all the grunt work of my week, but mainly just to see the spark in my eye that I had before I became exhausted and burnt out. 

I'm worried I've taken on too much. Full time for this semester. Ashy is in school. Plus I'm sick and in pain... I want to sign up for the PTO at school, and maybe help coach TBall in the spring...

I am going to die. 

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...

Suicide Prevention and Depression Awareness

I'm down to DAYS now that we're in June. (20 more... Just under 3 weeks) I still have quite a ways to go to reach my goal of $1000 for the American Foundation for Suicide Prevention? Out of the Darkness Overnight Walk? on June 27th in Boston. Please help me raise awareness and end the stigma associated with depression and mental health. Every single penny helps us to fund crucial educational efforts to not only prevent suicide, but to help survivors and families. Please help me in my efforts... No donation is too small, and sharing my link and story helps more than you know. If you're struggling in the darkness, there is light, I promise. http://theovernight.donordrive.com/participant/ksimonelli (AFSP is a 501c3 charity, and all financials are available here: http://www.afsp.org/about-afsp/financial-information) Boston OvernightWalk Suicide Prevention Donate PayItForward Mental Health Suicide Awareness Education Fundraising Anxiety BiPolar BPD

... 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!!!