At work today…I was checking out a patient (I work for a Pediatric Dentist) and my boss was visiting with the mom. He was talking to her about her back problems and told me to tell her what I had. It was very different not getting the usual confused stare. She actually knew what it was! Her good friend/neighbor has it and has gone through 4 surgeries. She was really excited to tell her friend that she met someone else with CM1 and SM. Not that I would ever wish this on someone, but it felt really good to have someone KNOW what it is that I have. It also led to a more indepth conversation with my boss. He really wanted to understand better. He knew that I was in pain…as much as I try, I can’t hide it. But, he didn’t know to what extent my life has been and will continue to be affected by this. I’m very lucky to work for people that genuinely care about me and consider me more like family. He has Leukemia (he’s in remission now)
I said i had Chiari Malformation & Syringomyelia and someone actually knew what I was talking about!
Weird…it cut off the last half of my post:(
So…here it goes. My boss has Leukemia, so he understands what it’s like to have to work and smile through the pain. The diference is…everyone knows what Leukemia is. Someday, hopefully in the near future, everyone will know what CM and SM is too. I’m sorry for rambling on for so long…lol:)
Crystal
Crystal......
I am so happy that the folks you work with are so understanding and caring...that is RARE..no a-days!!!!
That must have felt good..talking with the pts. mom, who knew what Chiari is and how difficult it can be to live with..
I 100% agree with ya......wouldn't it be fab if Chiari was not this 'rare' condition that no one has even heard of ...never mind pronounce!!!!!
Research is finding that CM1 is not as 'rare ' as once thought...due to the MRI....more people are known to have it..but here is the BIGGIE....more doctors need to be better educated on CM1...MAINLY NL's..I say this b/c they are ususally our 1st stop...after out primary refers us.
I have had NO LUCK with ANY of the NL's I had seen...but no need to despair ...I am sure there are some out there that know something about it...I just wasn't one of those people....today, I can laugh at the stupidity at them...the weird things they said...."OH, Yes, I am very familar with Budd-Chiari Syndrome"..I had to tell this NL..bascically, if i had Budd Chiari,I wouldn't be in a NL office...my understanding at that time was that Budd Chiari was a LIVER problem!!!!LOL
YA gotta love the doctors that cannot even pronounce Chiari....thats when you know, get your purse and coat, bypass the 'check -out desk' and LEAVE..LOL
MERRY CHRISTMAS!!!!! Keep us posted on whats going on with you..you are not alone in this.
Lori
Crystal- thats awesome- at my dentists office when i had my surgery they were super concerned and everything they wanted to understand and after i started feeling better because i was able to keep a timeline and when i wasnt my husband kepted it up we printed it out ffor them which explained everything from symptoms, to doctors, to eating and sleeping habbits- i tell ya my dentists office is amazing- then when my son went in for his cleaning 3 mths ago i met a fellow chiarian dad there- the receptionist intentionally scheduled us at the same time- smart lady! :D she wanted us to talk because he was a newly diagnosed chiarian
LOL Lori- i had one doctor tell me i had budd chiari also and i was like really are you flipping kidding me? if i had that then why are you looking at my head and NOT my mid section- thats my liver ying yang NOT my brain. GoodBYe- he came running after me to find out how i knew- I said by READING!- go read i told him and get better educated!!.
Thank you Lori:) Prior to that conversation, I was so close to losing it. The only reason I worked yesterday was to cover for the 3 people that were out sick with the stomach flu. I was hurting exceptionally bad and had to even take 6 of my 8 pain pills for the day just to get my butt to work that morning! Yes…I know I’m not supposed to do that, but I couldn’t have made it there without doing that. It just means I have to make due with less on my days off, which is like a sick form of torture. So, it meant a lot for someone to acknowledge what we all go through with Chiari. I’ve been so close to having nervous breakdown lately and that was exactly what I needed at that moment. I am VERY lucky to work for people that care about me:) But, don’t get me wrong…they have their moments…lol. My boss has a pretty bad temper, but I’ve learned how to deal with it over the years.
You’re right…it’s really sad how little some doctors know about Chiari. I’ve never been to a NL and it doesn’t sound like I’m missing anything. I appreciate and respect everyone who is trying to raise awareness for CM and SM. I hope to help with that someday. Hopefully…after I have surgery, I’ll feel better enough to help. I used to volunteer for many different causes. I was even on the MDA telethon one year and got to go see the kids at the MDA camp. It was an amazing experience:) I can’t wait until Chiari gets the attention and funding for research it deserves.
I’m sorry for rambling on again…lol. Thanks again Lori:) Merry Christmas!!!
Crystal
Lisa,
That was so awesome of the Receptionist to do that:) I’m glad that they care enough about you to want to learn and understand Chiari. There are good and caring people out there:)
I hope you have great holiday weekend with your family:) Merry Christmas!!!
Crystal
What a blessing to have supportive people around you! And I have yet to find another person in my area who has even heard of it much less have it themselves. I have been told many times that this is a rare disease; however, my neurosurgeon has done hundereds of decompression surgeries in my area. I would love to connect with some of those patients. I really would like to see more education about Chiari out there, so that whenever someone notices my scar on my neck and of course asks about it, I wouldn't need to explain every detail about it.