Can You Help Meg With Her Medical Journey
It just seems like people, with chiari malformation, are coming out of the woodwork since I started sharing my journey almost 3 years ago. I've shared over 30 different stories about chiari warriors in our state. I've helped with many fundraisers to raise awareness across the state. But, today, my chiari sister needs your help.
Meet Meg. Meg was one of the first people who reached out to me when I was first diagnosed. She wasn't looking for the spotlight to be on her. She wasn't looking for attention. She just wanted me to know that I wasn't alone. A lot of chiarians in Maine feel alone because of an uneducated health system.
Meg has had a band-aid surgery to help with her chiari symptoms. She has also suffered with a stroke. Confused and unsure how to treat her, Meg's doctors have just pushed along from one physician to another...all unsure of what chiari is and what to do with it.
But that has all changed now. Meg was able to see my doctor in NY, Dr. Bolognese. One of the few chiari specialists in the country, Dr. Bolognese has scheduled Meg for surgery on January 30th. This will help Meg regain the quality of life she has been missing for the last few years.
As the surgical date gets closer, Meg shares her feelings:
It has started to sink in, and I may be a little freaked out. Freaked out about how the kids are going to take the news, how Kalin is going to handle me being down and out for a bit, who is going to clean and do the laundry, how we will make it with Kalin having to be out of work to be with me, how am I going to finish planning the wedding, how am I going to do during the surgery, and holy shit I have to have more brain surgery. I think the thing that freaks me out the most, is having to ask for help. It makes me feel all icky all over, like I'm naked in front of everyone. I would almost rather deal with chiari pain, but then we wouldn't be here. So here I am, naked in front of all of you asking for help, asking for you to come with me on my journey. Any amount helps, and just sharing this post is one of the top ways you can help!!
35 days till they open me up, and it can't come soon enough. Yesterday was my birthday and I spent it sleeping. I woke up and watched the kids open their presents, and even tho I wasn't able to move I was here for them. I was able to enjoy Christmas morning with babies. This has become a way of life for us, me in pain and my family just coping with it, watching me fade into my illness. Going on with their lives as I lay stationary, watching my life pass me by. I have become a loner, I don't leave the house unless necessary and then I pay for it for days after. I used to be able to juggle so much, and now I forget to be an actual human being!! Helping is in my human make up, it's what I do best, asking for help for myself, not so much. So many questions run thru my head about etiquette on how to do this, but there really isnt any easy way to ask for help. I would rather walk barefoot on miles of Legos, then ask for help. But since walking on Legos won't fix my brain, I have to have surgery and I also have to ask for help, the smallest amounts help more then you will ever know, and sharing is an awesome way to help my family as well.
The closer we get the more afraid I become, not so afraid as to not want pictures of my brain exposed, but afraid. Afraid my kids won't understand, afraid something will go wrong, afraid it won't work and I will still be miserable. Your donations will go such a long way, there isn't an amount that's too small. Please also help by sharing, the more shares the more people will be reached. Thank you to all of you that have donated and shared. You have helped in such a large way!! Much love to all!
December 28th - Breaking the news to her daughter, Kenzie
Just broke the news to Kenzie about my surgery, I can honestly say I feel broken and defeated. "Please don't die Momma" words I never ever wanted to hear, or put her in a place to say those words.
I know first hand the expense it is to travel to New York, stay in a hotel, rent a car, fly, eat...all of it. Being sick is hard enough...but adding worry to the pot just makes it worse...then you feel like a burden on top of it. It's an awful feeling, when all you really want is to be better so you can do things with your family.
If you are able to offer some assistance to Meg, please visit her Go Fund Me page. If you're a business looking for a last minute tax write-off. Consider Meg and her family.
There is a fundraiser being organized for January. Details coming soon.