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!!!

... I made a gofundme for my medical bills / bills

Its gotten to that point already...

Kristen's GoFundMe Page

Here is the text, copied from the page:

In early October (2014, this past October) I was diagnosed with Intracranial Hypertension (also known as Pseudotumor Cerebri). Intracranial hypertension literally means that the pressure of cerebrospinal fluid (CSF) within the skull is too high. I started having blinding, debilatating headaches, pounding that would sync up with my heartbeat/pulse in my ears and behind my eyes and even my teeth feel like they have a pulse, with extreme nausea. I've had multiple Emergency Room visits, MRIs, CatScans, Doctors appointments (both primary care and Neurological) and we're still trying to find the best way to treat this. 
I had a lumbar puncture done to relieve pressure, but then developed a spinal fluid leak that left me, again, in the ER, unable to move, stand, vomiting, hearing loss... and blood patches were done, (1st failed, 2nd attempt failed, then the 3rd "try" was finally a success and I had relief from the "spinal" headache that was caused from the leak, but within 48 hours, the original IIH/Pressure headache was back. 
I also have a condition called Chiari Malformation (a serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine and causing many symptoms.) as well as Ehlers Danlos Syndrome (The Hypermobility Type of EDS is characterized by loose joints and chronic joint pain.) & an existing issue with Chronic Migraines, all of which have not made this entire ordeal any more fun.  The doctors dont know when, or if, I'll be returning to work... or when/if my meds will start to work. (I'm already on Topamax, we added Diamox to "slow" the production of CSF... if that doesnt help, we may need to look into whether or not I'll need to have a shunt placed)

I have been out of work since October 10th. I have applied for Short Term Disability, but the insurance company has decided that they want to review over 2+ years of medical records, with more than 10+ doctors, specialists, ERs, hospitals, before they decide if they want to pay out. In the mean time, My husband is trying his best to support us, but losing my income and adding on a vast array of medical bills, copays, deductibles, Rx payments in place of my paycheck is causing a strain. As of Nov 18. 2014 when I spoke to the insurance co, they are estimating another 4-6 weeks before I could possibly see any sort of payment, "if I'm lucky" 

Its the 3 of us, my husband, myself and our 4 year old daughter. I'm worried about bills, the holidays, keeping our car (our only means of transportation), keeping my health insurance (a benefit that I have to repay to my employer, which I haven't been able to pay since I haven't received a check yet, and that amount is just adding up weekly and I fear they may stop by insurance soon)

I'm not looking for a miracle. I'm just looking for a way to stay a float and keep a roof over my daughters head until I'm either "not sick" or the insurance company wakes up. Bills are stacking up... and we ran out of savings really, really fast. 

Thanks for taking the time to read about me. :-) <3 p="">

what the hell is wrong in the stars...

I forgot that crying nonstop gives you the headache from hell. and its the "O.M.G. hold me I'm devastated by the world" cry.

The world was fine until like, 11am...
and then suddenly Tommy-Cat wasnt able to walk. We went to Massachusetts Veterinary Referral Hospital in Woburn for emergency car... the diagnosis:
"Feline Aortic Thromboembolism" (also known as Saddle Thrombus)
he also had a heart murmur, congestive heart failure, crackles and fluid in his lungs, his body temperature on his backend was significantly lower than his front.

I lost my furry little man.
We laid on the couch for skootches and he purred for the first time since everything started, which was now 4 hours. My husband and daughter gave hugs, pets and kisses and said goodbye.
We made him comfortable and he laid on my chest getting pet while the doctor took all the pain away... He purred the whole time. He actually looked like he was smiling... I held him the whole time. Mommy wasn't leaving him...

I'm going to miss him crawling on me in the middle of the night to lay on my chest and headbutt me to get love. The way he'd rub against Sean's goatee to let him know that he loved him. He licked my forehead last week when I was home with the spinal headache and laid with me nonstop. I needed him as bad as he needed me...

Fioriet, Flexeril... nothing is helping my head pain. i need to get a referral to a pain clinic.

I'm just at a loss tight now...