To many of you, I may look like your average 23 year old young woman. But truth be told, I am far from that. Every day has become a struggle since December of 2011.
In December I became sick. But it wasn't your normal "sick" as in the flu, or something that just felt like a cold that would pass in just a few days or a week or so. I had a whole list of symptoms that developed sort of out of the blue. After a conversation with a dear friend of mine, I decided to make an appointment with my family doctor. I described my symptoms - the dizziness, the vertigo, the migraines, imbalance, ect. He was honest and admitted that he didn't know what was going on either, and decided to order an MRI of my skull/brain region, and figured we would go from there. I had no idea the results would be life changing.
A few days later I received a phone call that I was not prepared for. I was diagnosed with a Chiari (kee-ar-ee) Malformation 1. I had never heard of such a thing. In the most basic terms, it means that my cerebellum is extending downward into my spinal column. Obviously, this news came as a shock and was not what I was expecting in any way. From here I was referred to my first neurosurgeon for further information and to figure out a plan of action.
The neurosurgeon explain that this was something I was born with, but he couldn't explain why all of a sudden it decided to present itself - and still to this day, no one really can. Apparently people can have a Chiari and never even know. It affects something like 1 every 1,000 people and is actually most recognized in children and teens. So, he ordered more MRIs including a special one that would show whether or not my spinal fluid was being blocked by my cerebellum and then we would, again, go from there.
Yet again, the results were not what I was hoping for. In fact, my spinal fluid isn't getting to where it needs to be. It is, but not completely. He noticed that I had what appeared to be a cyst in my spinal cord, and again, ordered more MRIs to see how big they were, how many there were, etc. Surprisingly enough, more bad news. There are quite a few, they are quite large (some take up as much as 75% of my spinal cord) and they are constantly growing and pushing on my spine. Another diagnosis, Syringomyelia. (Sear-een-goo-my-eh-lee-yuh).
My neurosurgeon decided that the best plan of action was a surgery called a decompression - a surgery that he didn't do, and I was referred to another neurosurgeon. I absolutely loved both this first neurosurgeon, and the new second one. Unfortunately, he had stopped doing the surgery five years ago because as he put it - the results of it were frustrating.
So this meant I had to find a third. I refused to give up. In the mean time, I was also dealing with a handful of neurologists - because the MRI results had also shown abnormal white matter on my brain. Three neurologists later, and I'm finally settled on one who believes me, one who I trust, and one who listens (although the white matter is still yet to be diagnosed). Not to mention the emergency room visits, urgent care visits, worsening of symptoms, being admitted to the hospital for four days, physical therapy, seeing my family physician, etc. Safe to say, things have progressively gotten worse - as I was told they would because the cysts in my spinal cord are constantly growing.
At this point I've lost most, if not all, feeling in both of my hands and my entire left side. I've also lost most of my vision, have daily migraines (I've had those as long as I can remember), cannot walk without a walker or a cane (I have experienced some pretty bad falls as well as passing out), have constant numbness in my legs and feet, ringing in my ears, constant neck pain/stiffness, severe memory loss, and the list continues to go on and on. A diagnosis of Fibromyalgia as well as P.O.T.S. doesn't help matters either.
None the less, I have met with a third neurosurgeon, and truly believe that this man is the one. (I've had excellent luck with neurosurgeons.) I completely trust him. He's been doing this 17 years and has beyond amazing success rates. And let's not forget that he's a Chiari and Syringomyelia specialist. It took 7 months, but I finally found the person.
Now, this condition can be paralyzing. And apparently, I'm reaching that point. My employer had told me to wait until November (I work in the wedding industry, and they wanted me to wait until wedding season was over), but my surgeon told me that I will absolutely be in a wheelchair by November. He wanted to do the surgery early August, but he is booked. The soonest date he had available was August 31st, and I took it. It all happened so fast. I met him on a Tuesday and by Friday, I had my date. It's set.
I'm beyond nervous. I'm terrified. This is a complicated brain/skull surgery, and recovery isn't easy (obviously). I've read horror stories and I've read inspiration stories. It's different for all of us Chiarians. All that I know is that I have surgery August 31st, I spend my first night in Intensive Care, and then will spend the remainder of my time in a private or semi-private room. Oh, and that I should plan on 3-5 days of being there. I've also been told by all three neurosurgeons that this is a painful surgery, and to expect to wake up in pain. (At least their honest?) This isn't a cure. There is no cure. There's a 40 - 50% chance I get better, a 40% nothing happens, and a 10% chance I will get worse. So, I'm going into this with faith and as many positive thoughts as I can muster up at this time. I won't go into the details of the surgery as it can get a bit gruesome, but they do remove a portion of my skull (near the spine/skull region) to give my brain the room it needs, hopefully allowing the spinal fluid the room it needs, which will the allow the cysts to shrink on their own (again, hopefully). No promises are made. If you want to know more, please, feel free to google it. Apparently you can even YouTube it.
And finally, this is where this fundraising comes in. After telling my place of employment (whom I've been employed with for 13 months) about this surgery, I have been told that I may or may not have a job afterwards. I became a full time employee in December. They do not offer benefits, paid time off, sick days, etc. Nothing. They have mentioned they will more than likely hire someone to replace me, as we are a small company and only have 4 full time employees (including me). I am not protected by FMLA, so yes, this is legal. While I respect and understand that, it is hard not having the security of either "yes, you have a job" or "no, you don't." Even after I told them I was more than likely able to return to work after 4 - 6 weeks, I was given the same answer that we will "wait and see." Based on their actions, words, and overall treatment towards me - it is clear that I will be replaced.
I, like everyone else, have bills. I have rent, electric bills, etc. that I have to figure out how to pay while I am recovering. I thought I would have until November to build my savings account, to stash every cent that I could, but my time has been cut short. I have a mere 8 weeks at best.
Any and all money raised will be put towards bills towards my bills to keep a roof over my head, my lights on, and my prescriptions that I will need. I cannot thank you enough if you have taken the time to read my story, let alone to donate anything. Every dollar makes a world of difference.
You can also read more and see the start to a body of artwork I have created about dealing with this at my blog by clicking here.
* Please note: the "rewards" will be made while recovering, so please be patient as I'm sure I will have my good days and my bad. Cards will be made when I have the energy, frames will be purchased when I feel up to walking around the store, etc. Since the deadline is before my surgery, I will do my best to edit and update the list of available images as often as possible. I'm not sure if it will let you leave a comment and select your image, so if not, please email me at [email protected]