loads of info and crazy talk -

my pre-surgery packet came in the mail late friday afternoon. I sat down and started to read it and knew very quickly this would be a trigger for some anxiety. I got thru 2 of the 5 pages. Then when John got home, i passed the papers to him and asked him to read them and give me a summary. There is a list of vitamins to take, then a list of vitamins not to take. It says to eat 5-9 servings of fruits and vegetables and limit certain foods like tomatoes. In addition to what seems like normal requests there are added suggestions like quitting caffeine and getting 8-9 hours of sleep each night for 14 days prior to surgery. common now, thats just crazy talk. I loose quiet a bit of sleep over all of this - it won't be the time when i double the amount of sleep i am used to getting. but........... i will.....TRY. (speaking of which it is 10:55 and i am about to turn in to a pumpkin on johns watch)

5th or 12th

Yesterday I got a call from Kimberly, Dr. Oro's nurse. She was calling to see how i was doing, to see if there was anything i needed and to make sure I had scheduled some appts. for pre-op/etc. While small talking I told her (again) that I think waiting til the 12th may be the hardest part. Once OCT is here - it will be a countdown on 12 days........... instead of the 5 days I was hoping for. Well, pause........ she thinks for a minute and asks if i really do want the 5th. She thinks that maybe the 5th is free right now. I was put on the spot and had no idea how to answer. i mean - i have been complaining about not having the date i wanted 10.05.10 - - but since have said and written 10.12.10 so many times that I am comfortable with it. ANYWAY - she said she would text the DR and call me back when she heard from him.

OK, so that phone call along with a packet of pre-surgery info that was sitting on my kitchen table was enough to work me into a tizzy. I told a few people on friday about the impending date change, but after it sank in a bit it was no longer exciting. It was terrifying. the 5th is less then 10 days away. and I am not a calm, relaxed, positive thinking, rational person that i had been earlier in the month. This may be a strong sign of what is to come.

*UPDATE on monday PM: Kimberly never called me back - and my dad called to say he booked his plane tickets to be here on the 15th. it is set, I am not changing. Surgery = the 12th!

many stitches - - - -

and i am not referring to the ones that will be in my head. (those are actually staples)

I am talking about my new found hobby of sewing. I am still learning. I know the basics, I can sew curtains and pillows - and then one pattern (A-line skirts) I found out that I needed to have this surgery on SEPT 1st. i had previously scheduled an A-line skirt class at Fancy Tiger for SEPT 4th - which is the anniversary of when my grandma died (8 years ago) I was glad when i saw that date on the class schedule since it made for a good memorial to her.

Anyway - the whole surgery soaked in, i was able to tell my friends and my family and then i got to look forward to Saturday so I could spend 4 hours learning to sew something i could wear. It was instantly a great diversion. I ended up sewing two skirts that first weekend. I figured the more I could make back to back - the better i would learn what I was doing.

In 20 days I have sewn 4 windows worth of curtains, 3 skirts for myself and 2 skirts for my girls. OH, and reupholstered 4 kitchen chairs. I am on a roll.

When I am sewing - I am not thinking about brain surgery. and today: I am sewing.

5 followers ~

I have five followers, (thank you guys) I better write something. My days are busy. always. and then my nights are relaxing. Tonight I have been watching my reality TV that i have tivo'd and i had to pull myself away to come and catch this blog up.

The other week when we scheduled my surgery date we came home and called our accountant/business guy and finally - after 3 years of talking about it - switched Johns business from a partnership to an LLC. Just so that the business is separate from our personal (hospital) bills. Because of that big change - and because I won't be on top of the bills for a bit - John is taking over that huge responsibility for a while (or forever) John and I spent the day on 2 phones/2 computers getting bill pay set up and switched over with a new bank acct. I also found some time to sort those pesky stacks of paper and mail we always have. Alright - all that boring stuff and a wasted day aside. (wasted but productive)

More financials - I did get some good insurance news. I am 100% in network - all the way around. I am SO fortunate to have Dr. Oro here in Denver/Aurora. The financial counselor and the few insurance people i have spoken with on the phone have seen no red flags. I did finally have someone ballpark the cost of the surgery for me. They say it is a $120,000 with a 3-5 night stay. I guess i AM honestly glad i do have insurance. and I have always said that I dont have "good" insurance, although - i may. If they don't drop me, if they do pay their 80% after my deductible and then don't nickel and dime me after my MAX out of pocket - then - i should consider myself VERY fortunate.

Conquer Chiari Walk

Conquer Chiari Walk Across America

Saturday, Sept 18th, 2010: Denver's second annual 3K walk to raise awareness and funds for Chiari malformation, a neurological disorder affecting more than 300,000 people in the U.S. The Conquer Chiari Walk Across America is a series of walks held across the country on the same day. Proceeds will fund Chiari research. Registration begins at 8:30 a.m., the walk and activities begin at 10 a.m. Belleview Park, 1225 W. Belleview Ave., Englewood, conquerchiari.org

I hadn't really planned to go. John thought it was important. I had first hoped i would be in Chicago and then realized it was a double soccer game saturday (which is always the case in sept/oct at my house) But last minute - i decided to go in between games. I got there just as the walk was ending. I take a long time to warm up in social situations, I need to observe quite a while before I figure out what to say and to who. It was no surprise that i took a ton of photos, listened to a few conversations, watched the physical therapist work with some people, bought some Chiari bracelets and left without saying a word to anyone. That is how I roll. on the sidelines. Maybe next year I can put together a team and we can be celebrating my anniversary of my successful surgery.

I am unsure where to start

and just like that, i created my fouth blog. Now i have some catching up to do. This is a blog i should have started almost 2 years ago and instead decided at the time that talking about my newly diagnosed condition only made things worse for me. When my doctor gave me a free copy of the Chiari book - i took it home and planned to read it cover to cover that night. Instead I got about 10 pages in to the book before I realized that every symptom i was reading about - i was getting. (mainly trouble swallowing and headaches) So, that night i tucked the book away and haven't seen it since. (i actually can't find it) In hindsight I really should have taken the time to learn about what it was that I have. It may have been helpful to know more about it so that I wasn't blindsided a couple weeks ago when the Dr. said i NEEDED surgery.

Here I am - with less then a month to go before a major surgery for Chiari malformation and Syringomyelia. I am in no way an expert on my condition, but I live with it and I can tell my story of what I have been thru in the last 2 years and what my experiences are going forward with surgery - hoping for a cure.

I am going to be going back in my archives to posts that I have shared on other blogs about Chiari. What my symptoms were, and how I came to my diagnosis. Once I have the archives posted (post dated) I will try to keep this blog up to date since I have just 21 days until my surgery.

archives} Chiari Malformation update.

JANUARY 23RD - 2009 What a big day. First it is an anniversary of sorts. John and I started dating on this day, 14 years ago. We call it our french fry anniversary but that is a story for another day. Who would have guessed that 14 years to the day i would be sitting in a Neurosurgeons office anxiously awaiting him to read my four MRI's and tell me my fate. I had been nervous for the last 6 weeks but it slowly built every day until this last week I was a wreck.

(my appt. was suppose to be jAN 28th but they had called to reschedule me to Feb 23rd. i was in the grocery store when I took that call and I THOUGHT it was them calling to tell me there was a cancellation and they needed to see me right away. So - clearly, i lost it and started to cry. The lady calling felt so bad that she asked the doctor to clear some time and make room for me, and possibly other patients that had waited over a month. They called back and gave me an earlier appt. the very next week)

SO, I had read a bit online and I knew a little something about the terms and the surgery associated with Chiari (Kee-R-ee) I was really worried that the doctor would see fluid on my spinal cord (on the 3 new MRIs) and I would be having surgery within days. SO - it was an instant relief when we sat there and went thru my films and heard that it was infact Chiari - type 1 and that I had little of no fluid on my spinal cord. I was instantly celebrating because I knew for the most part the emergency of the situation was not as i had feared. Then he went back to the original brain scan. A person without Chiari would have numbers like 2-4MM. I don't have my technical terms in front of me with the specific names - but it is the amount of the brain (cerebellum) that dips down crowding the spinal cord. Mine comes down 15-16MM. I was hoping for a lot lower number. I have read enough online about people having surgery/etc. and 18mm seems to be a magic number where people are getting surgery. I asked if there was a general time frame. Are we talking months or years before i am at 18mm? He said there is NO study. He has a patient that dropped 4MM in 11 years. (but that is just one case he knows of) That's somewhat encouraging, but i guess all and all it still means it's just a matter of time before I will need brain -decompression surgery.

The good part is - I am an extremely optimistic person so I don't think this should weigh be down much. (i could be wrong) I do believe that everything in our bodies is connected, positive thoughts, taking care of myself - etc. and if i can do those things I think I will buy myself some time. I am in pain everyday and have annoying symptoms, but i am very thankful that so far it does not inhibit anything I want to do. and it is only when I can't do things, or things are too painful that we will reevaluate the situation. Until then I am going to physical therapy once a week to work on the pain in my neck and back. and I will need an MRI every 6 months.

On a side note - here come the medical bills! I have my first MRI bill for $575. (thats my share) then i have a bill for 3 more coming. Along with 2 specialists. The imaging center told me it is fine to break my payments up in to 6 monts. With 4MRIs that is still $384/month -6 months. Not sure how THAT is going to happen.