... 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...

... One hell of a hiatus...

... I've been missing for... Years? 

Originally, this blog started out as a way to document my pregnancy with Chiari Malformation & Fibromyalgia... but honestly, it was uneventful. 
For those of you tuning in late, I have Arnold 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.) and I expected it to cause all sorts of horrendous issues with my pregnancy with Ashlyn (Who's now 4 and a half, by the way...) 
it didn't. My pregnancy was pretty uneventful, except for the gestational diabetes and being induced twice. She's energetic, happy, healthy, smart and so far, has shown no signs of Chiari (thank goddess.) 

What else has happened since... 2011... 
Still blissfully married. (since 2008!) Been working at a pretty spiffy warehouse/trucking/logistics company since August 2012. Back in School.. Got my certificate in Substance Abuse Counseling and now I'm working on my Associates in Accounting. 

What else... Oh ya... They keep diagnosing me with more medical maladies, which is why I've decided to start blogging again. 

Let's see what we've got going on now (complete with links!):

• Chiari Malformation - Had decompression surgery on 01/13/2009 - Suboccipital Craniectomy with C1 laminectomy, brainstem decompression and a Duraplasty - I asked them to take pictures, even offered up my camera, they weren't able to, or else those would be here! 
• Fibromyalgia
• Gastroesophageal reflux disease (G.E.R.D.)
• Gastric Polyps
• Depression 
• Dermatillomania
• I.B.S. (Irritable Bowel Syndrome)
• Hiatal Hernia
• Spina Bifida Occulta
• Vocal Chord Disfunction
• Chronic Migraines (complete with aura and even vomiting! yay!)
• Raynaud's 
• Ehlers Danlos Syndrome - Type 3, Hypermobility (E.D.S.)
• Intracranial Hypertension (also known as Pseudotumor cerebri)

Craziness, huh? 
The last 2, E.D.S. and the I.H. have been in October/November of this year. It sucks, I won't lie, but the E.D.S. diagnoses finally explains a lot about the all over pain and joint pain I live with... and the I.H. has been... something. I've been at the emergency room so much the past month that the nurses actually KNOW me know. I've had a lumbar puncture to relieve the pressure (yes, it helped, but I had a cerebral spinal fluid leak after, resulting in horrific spinal headaches that landed me back in the E.R. with the inability to move properly, stand, hearing loss, vomiting, and resulted in 1 failed blood patch, a failed attempt at another blood patch, and then the 2nd blood patch that FINALLY resolved the leak, but now the pressure is back in my head. *sigh*
4 large needles shoved into my spine... I still cant stand up properly/move properly from back pain... but HOPEFULLY that will resolve soon. I do NOT recommend spinals/Lumbar punctures (Especially if you're a Chiarian... ugh)

We're going to start Diamox tomorrow to try to regulate the pressure and slow down the production of spinal fluid...  (Diamox user review for I.H.) I'm already on Topamax, which is used secondary if Diamox doesnt work, and I've been on that for years on/off... so we'll see how I do with the Diamox. Weight loss is another option... if it doesn't work then shunting is the last resort, and I'd really prefer to not have a shunt. 

So after 5+ years of feeling pretty damn good, the last few months have gone down hill... 
I had to apply for Short Term Disability. Hopefully I'll have a determination on that sooner rather than later... because its been weeks since I worked, and there is NO money tree in this yard. I actually had to withdraw from one of my classes because I missed a class 4 consecutive weeks because of E.R., hospital admittance's, recovery... after talking to advising and financial aid we made the decision to try to just keep my classes online for the rest of this semester and only online next semester. I never thought I'd get to a point where I'd let being sick kick my ass again. 

As crappy as it's been, its not all bad. I'm fortunate that I have an amazing husband and daughter... my sister, mom, dad, friends... all astounding. I'm alive, I still wake up every day. I'm above ground and breathing so I'm golden. I get hugs and kisses from the sweetest little squish in the world... so I'm pretty damn lucky overall. Plus I have a team of doctors who I really think are pulling to try to help me this time, and they really listen to me when I talk and dont just try to shove prescriptions at me for pain killers to shut me up... which is good, because I really dont need that in my life. 

Even though I have no idea how things are going to go, I still went ahead and signed up for the American Foundation for Suicide Prevention OUT OF THE DARKNESS Overnight Walk. << Click this link to view my page to sponsor me >> I'm hoping that by June 2015 I'll be better, because I'm planning on walking 18 miles from Dusk until Dawn to raise awareness for depression and suicide prevention. I struggle, I've lost loved ones... and I know I'll continue to struggle, because living in this much physical pain is emotionally draining and takes a toll on you. 

So I guess we'll see how this goes... I guess the blog about Kristen's Brain Baby is now going to be my bitch blog and a place to educate... 

Ashy and I ... She's so big now!!