For one example, Jim and his wife Kathy. He lives here in Central Florida and he also has multiple Cavernoma's. He had surgery this past year to remove one. It was giving him seizures. He was a letter carrier (what a coincidence...huh?) He had the surgery, and his job forced him into retirement. In a way he was lucky, because he got out of the Postal Service, and he was able to retire because he had a civil service job. George who had a stroke, received a threatening letter from his supervisor when his FMLA expired. They didn't offer him the option at the time. P.S. He did take early retirement, but that was about a year later. And he did it because it was offered to everyone.
But I digress.... Kathy and Jim opened a Pizzeria in Kissimmee... and let me tell you...that was the best pizza I have had since I was a little kid in NY. I mean really good... and we had Zeppoli's, and Chicken Wings that were out of this world, and Garlic Knots. Everything was delicious, and what was even better were the hosts. They were warm, friendly, kind, they treated my Mom like she was a long lost relative. They were really great.
Jim and I and Kathy and George commiserated over the endless search for Doctors. The questions, the answers, or so called answers. I found that I was not alone. Not that I didn't already know that. If there is one thing you learn it is that your experiences, frustrations, and delights are the same. We get the same answers, and or the same lack of answers no matter where we go.
I wish that their shop was closer to my house...(currently it is a 31 mile drive to Kissimmee from Oveido/Winter Springs.) But I will make it again, if not only for the Pizza, but also to see how they are doing. They gave me the name of their doctor, who I plan on calling in the next month or so.
Other friends I have found are not as close as 31 miles. They are farther, but never further than my computer upstairs. And they have blogs... "Girl with a Pearl Size Cavernous Angioma" is a 20 something that also has an Angioma on her brain stem. She nick named us "stemmies" (great name). She is amazing... she always reads my blog, always replies with something encouraging to say, or just to let you know that she is listening... And besides that she is the neatest person. She is an artist, and she loves vintage things, and she isn't hung up with the material things in life. For instance, she bought a p-coat at a garage sale, only to discover that it is a p-coat from the German Navy. Military issue p-coat. But there is a button missing. Well not for long. My friend from Germany was able to get that button for her. The exact same button, and he will be bring it with him this weekend when he comes to visit. So by the new year, she will have the button she need for her coat. I don't know about you, but I think it is sooooo cool that she has the coat, and posted about it in her blog and that because of our Angioma, we connected, and she will have her coat with all the buttons...! Isn't that cool...?
My next freinds are even farther. "Life after BC", and this is Tarja, and she is all the way from Sweden. Also someone with an Angioma...and also a super nice lady. She always has the kindest things to say, her responses to my blogs and my posts on Facebook are always the best. I just can't say enough nice things about her. And again there is the common thread... we all have the same frustrations and fears.
I have more friends from Sweden. However not with Blogs, but they are my friends on Facebook. Michelle, she raises Basenjis...
So there it is. Everyday I am compelled to race up stairs and see what is new with my new friends. Maybe one day we will all meet. Maybe not... but I will still race upstairs to my computer, where we can all get together.
Oh... and I forgot to say where I ultimately met everyone... it was on "Angioma Alliance" No matter what you say, or what you question is, there is always someone out there who will have an answer for you, or an option.
Chances are, if you have an Angioma and you are reading this... you already know about the website. If by chance you don't... well it is a great resource. And if you are reading this and you don't have an Angioma... read it anyway, because then you might understand what we are talking about or going through...
Either way...thanks for reading...
2 comments:
my sweetest frend over the ocean, you made me smile, so considerate of you to mention my name and my blogg :)
Well my new frends are the best that this bleeding had with it, frends that are there for you,frends who care , always a ear that will lissen, if you are sad, glad, or want to tell something else.
so wonderfull and nice of you to find that button, she will be so happy
and all your other frends that I dont know but can relate to, their struggle and worries and happiness and good pizzas ( it would be nice to take a piece ;)
I have always thought that good food is something for every one, a thing that dont have to cost a lot to make you feel so good, and pizza is one of my favorite fast foods ;)other wise I love slow-food, food that take hours to make
and dreams may come through , maybe one day I will meet you all, and we will chat, and laugh and cry, well there is so much that makes you sad and there is so much to laugh about in same way
I´l keep reading, so keep on writing <3
You are so sweet, Heidi :) Thank you! You friends that are only 31 miles away - what luck that they own a pizzeria! Mmmmm...New York lady, huh? It's funny how when you move to a smaller place, miles seem much longer. When I lived in Detroit, 30 miles didn't seem terribly far. Now? In little ol' Kalamazoo? You make a day out of it ;)
I'm happy to have met all of you as well, and THANK YOU so much for your search for my missing button - The coat is so warm, I can't wait to wear it :D I'm going to post pictures of it once I do! I lost Little Miss Sunshine and Tarja sent me one, my coat lost a button and you're sending me one. You guys are so cool and it's been so nice to know both of you, if there's nothing else we got out of this, we did get each other!
Post a Comment