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!!
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