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...
Showing posts with label Ehlers Danlos. Show all posts
Showing posts with label Ehlers Danlos. Show all posts
Tuesday, September 8, 2015
Tuesday, November 18, 2014
... 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:
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.
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="">
Thursday, November 6, 2014
... 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!):
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!!
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!!
Subscribe to:
Posts (Atom)