Chiari Online Support Group

The Ramblings of Someone Who Needed to Get it All Out


#1

Okay... So I guess this is where I am going to write down all of my thoughts and all of the happenings in my life for others to view, no pressure. It would probably help if I was better at writing, which is weird to say considering I am trying to write a book. I guess the first thing I should do is give you a little back ground on me, please, feel free to skip ahead if you want to get to the here and now part, but, if not, then, hi.
My name is Beth. I'm 19 and I was Diagnosed with Chiari 1 on September 19, 2014. If you met me when I was a little girl you would have never thought that I would grow up to be the person that I am now, locked away in her room, barley able to live day to day life because of dibilating deasieases and uncomprehensible stress that I let no one around me know about. No, when I was little I was happy and carefree. I had aspirations and dreams and talents. I went out all the time, I was active, I was the life of the party and would say hello to everyone I met.
But things started changing when I got to 4th grade. That was when the first of many, MANY, problems began. It started out small. I had to go poop during class. Just once. This one small, insignificant act is where it all started. I went to the bathroom, came back some time later, embarrassed, and I thought I was done. A week later it happened again. Pretty soon it became a daily routine. This is when the stress started to kick in. I was being made fun of, a lot. I was always embarrassed, everyone was always looking at me and whispering and it caused me such anxiety and so much sadness I would just go home and cry. 4th grade went by and nothing got better, I didn't tell my family about what was going on at school because of how embarrassing it was, they knew I was having stomach problems, I was having them at home to, but I didn't tell them how sad I was, I kept that to myself, and I let it build.
In 5th grade everything became worse. Not only did my stomach get worse, but I secretly developed a horrid coping mechanism. This coping method is called Trichotillomania. A disorder in which someone, usually with anxiety, depression, and OCD pulls out their hair in an attempt to relieve stress. It's kind of like the cutting or drug principle, it hurts and it's self destructive and bad for you but to some people it feels good and helps, that's the best way I can put it. By the middle of 5th grade I had started to develop bald spots, this is when my parents realized that something was really wrong. They took me to the Drs. I was given many tests and put on many different medications before I was finally given a diagnoses.
It wasn't until 6th grade that my diagnosis was clear (or so I thought). One day everything was so bad, I don't remember exactly what happened but I remember I had a panic attack and then I had diarrhea and didn't make it to the bathroom, the nurse called my dad and put me in a private bathroom to clean up and I never went back to school again. To this day the thought of a school building still makes me cry. After this episode I was diagnosed with: IBS, Anxiety/Depression Disorder, OCD, Trichotillomania, and Agoraphobia (The extreme or irrational fear of people or leaving ones home). I was put on Prozac, which has made my life so much better, but also made me gain a ton a weight, and I was already fat, so now I'm super fat which is so annoying, and was put into an online school which, regrettably and for personal yet non medical reasons, I didn't finish. The downside of this experience is that I became all to familiar with Google and in doing so was labeled a Hypochondriac by my mother, whom, despite me being right about many things that are wrong with me, still sees me as one to this day.
I started noticing my more recent symptoms (dizziness, fatigue, face numbness) about 6 months to a year ago, and they progressively got worse and the list of symptoms grew as time went on. I would tell my mother and she would try to explain it as something else. Even now, after being diagnosed, she still tries to explain it away. I told my neurologist that if I have a headache I'll just sleep it off, he looked at me and told me that it wasn't Chiari, Chiari headaches would get worse if I layed down and that anything with these headaches (The POTS symptoms) is probably just psychosomatic. My mother now doesn't believe a word of what I say to her, she thinks I'm just saying it so I don't have to get up and get a job and move out (which is why I am moving in with my dad next year) but until then I'm just going to write on here, even if no one reads it. I have to be able to vent. For now I just have to keep my head up and do the things that I have planned for me to do. Get healthy and figure out how to cope.


#2

Oh sweetheart. I feel you. I feel your sadness and pain.

I’ve been bullied my whole life from grade one all the way through high-school and college. Even in the workplace. I was diagnosed with chiari in May of 2011 but it was quite obvious after talking to the neurosurgeon that I was probably born with it and it explains all of my strange childhood sense memories.

I’m suffering again with symptoms (I had the surgery in Sept 2011 and did well for 2 ish years) and according to my most recent MRI report ‘there is no indication of chiari malformation’… of course their isn’t I had part of my skull removed. but that sentence is more than enough for the insurance companies to cut me off.

I’m so sorry that you have family that dismisses your pain. I have a few of those too… I don’t talk to them much and one day I will tell them to get out of my life, lose my number and pretend I don’t exist.

I’m so sorry you are going through this. It’s a lot to take in and process and deal with. If you ever need someone to vent to, fire me a message. I vent on here a lot (sorry group :frowning: ) but letting it out here where people who think I’m a faker can’t find it… it makes me feel better.

I’m here for you, try to stay strong and keep your chin up. I know you probably don’t want to hear that but I really do mean it. I’m here and I will listen or give advise or crack jokes for you. Whatever you need.

hugs


#3

Dear Abby,
No they havent checked for that. I do have some of those symptoms, except honestly, if anything, I’ve gotten MORE sensitive to hot and cold. I’ll be keeping all this in mind though, lately I’ve just been trying to muddle through. I want to have a Dr holiday, so, that’s what I’m aiming for atm.


#4

Hey guys, yeah I’ve been reading up on dysautomania. It’s definitely a possibility. And I will also be looking into chiari specialist too, I think that will help out a lot, having someone that actually knows a little bit about this. You guys are awesome. Thanks so much for all the support! But on a side note you can just call me Beth because my name is actually spelled Bethanie not Bethany, and I know how weird and confusing that is lol.


#5

Hey I’m in you’re area and wanted you to know that I have the same symptoms as you like you ever wanted to talk!