halloween + research

First of all - Halloween. it was a holiday I thought I would miss. All of my calendar was clearned for Oct/Nov. and I just figured i would be in bed resting and healing. So, it feels very strange to be a part of the festivities. I think it made me a party pooper all weekend.

Okay - Friday night was spent in Rick & Kims garage carving pumpkins with the kids, eating pizza and even drinking my first beer in quite some time. Friends were anxious to hear of how the appointment went with Dr. Elliot. and after a speal here and there to a few - i kept trying to read into peoples reactions. Dr. Oro or Dr. Elliot ? Which is the best fit? It seems like for the first time I have a say in my treatment and a BIG choice to make. But wait - dammit - if that dosen't make things 20 times harder. A CHOICE! - a DECISION! - shit, that may leave me in a worse predicament. Sometimes my decision was so clear, and 10 minutes later I have convinced myself of the exact opposite. People say it is all for a reason, trust my gut feeling and stay positive that I have a the choice.

pumpkin patch & carving pumpkins

Saturday was spent on the (windy) soccer field and then messing around trying to find a last minute costume for a halloween party at my in-laws. I was feeling like a big party pooper and still had this brick sitting on my chest. This decision was looming. I intended to get home and save enough energy to hit the internet and do some research, but I was spent. I texted Cayce who had many questions about my appt. earlier that day. I felt like such a flunkie when I couldn't answer more then 1/2 of his questions - because I had forgotten to ask Dr. Elliot. What am I, an amature?

Medusa & Pinkalicious • family in costume • halloween breakfast

Sunday I woke up and declared that regardless of it being Halloween - I needed a few hours to spend THINKING, and researching. We went to halloween breakfast (who has heard of such a thing) and then came home and sat here in front of my computer. I was researching the different types of surgery that neurosurgeons do for Chiari and wasn't finding too much information until I came across the internet support groups via Yahoo and one that Cayce sent http://www.asap.org . THAT is where the info is! THAT is where the rumors are. THAT is where the scary personal stories are that land me in the corner, rocking in the fetal position. (well, not really - but WOW!)

I remember finding these internet boards 2 years ago when I was diagnosed but my time there was short lived. It is a place to find information on doctors, symptoms, surgeries and opinion. Good & Bad! But remember, I am a magnet to all the bad, scary stuff. I took some time, read a few things and then got myself a "handle" and password. I put out one simple question on three boards..............

(more to come)

spur of the moment - second opinion

Just like that - we got a call that Dr. Elliots office would see me early Friday morning. We quick - rearranged schedules, my mom was able to sit for the girls (who were on fall break) and John was able to move up a shoot and come with me. I felt like 1/2 or more of my new-found symptoms were from the anxiety I had from my original surgery being postponed and feeling like I was living borrowed time. I know I have lived with Chiari for 2 years and had times where I have felt down and out, but nothing like when a specialist tells you that you need to have surgery in 4-5 weeks and you are at 9 weeks and up in the air on a new date. I had many questions for Dr. Elliot and we went over some of my new symptoms. He was willing to perform surgery on my and just needed to tweak his office dates a bit. He gave us a date of NOV 17. I have the weekend to think about it and do some research.

In the mean time - Indian Buffet and Halloween festivities Friday, Saturday and Sunday.

Am I on the internet?

OH Boy. I talked with Kimberly yesterday (Dr. Oros nurse) We had played phone tag almost every day last week. She called first to tell me that she had talked to Dr. Oro and that none of my new symptoms seem alarming to him. My newest symptom is vibration. I sometimes feel like I am standing next to an idling truck. When you feel the vibrations thru your feet - up thru your spine. I was worried that maybe I should have an MRI on my spine since I haven't had one in 2 years. Maybe something has changed, but Dr. Oro didn't believe so.

When I asked her about scheduling a pre-surgery appt. (good for 30 days prior to surgery) She said that Dr. Oro was meeting with his surgeon on the 10th and wouldn't be able to even discuss surgery until after that appointment. That is a bummer to hear - things around here are still on hold - the calendar is cleared and i sit and wait for a call. She assured me his healing was coming along and he would be back to the office shortly. We did discuss options of other surgeons in the area and when I mentioned Dr. Elliot she told me that he is a surgeon that does deal with Chiari patients. I may pursue an appt. with his office.

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I have paper work in to Dr. Elliots office and am waiting on the cancellation list - just to see if he believe that I am safe to wait for Dr. Oro - or if he believes that with my MRI (what it showed on AUG 28th) + my current (new) symptoms if i am more of an emergency case.

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Later in the day I got another call from Kimberly - I thought that was odd to get two calls in one day from them. She was calling first to set up my pre-surgery appt. She first said any time the first week of NOV - but then we scheduled for NOV 8th. This is encouraging to have a bit of a timeline - but I am unsure why earlier in the day she said she couldn't go a head with appointments. She said that she would be able to give me a very rough surgery date and she said that Dr. Oros was going to be back in the office next week. So encouraging.

She then asked me if I had been online with any of this info. Online - yes. I am always "online" - what do you mean? She said that someone was online (on message boards I assume) spreading rumors that Dr. Oro was retiring. They had just received a call to their office that day asking if the rumors were true. Goodness - I have a blog (THIS blog) but my followers are family and friends. I have NO Chiari followers (at this time) - Not one person has contacted me thru this blog asking me to swap info or stories. But, my interest was peaked. FIRST - are you calling to give me a surgery date because you think I am spreading rumors online and you want me to stop? I feel like there is something a-miss. SO, for now - I have a rough surgery date in my back pocket.... I will keep the (penciled in) date to myself and continue on.

receiving love

just some examples of love and support I have received.

home made chicken noodles that my mom made us, indian food lunch dates, and saucy noodle ranch. some of my favorite things.

i think this is sewing 201

I have advanced from sewing 101. I allowed myself a few hours saturday to do MORE sewing. My friend kathryn and I took (another) class at Fancy Tiger. This time - Market Tote. It is no secret around here that filling my time with sewing has been my activity of choice to keep my mind off of my aches and pains and off of that calendar that chooses to either fly by and stand still depending on the circumstances. I had finished 12 new A-line skirts for myself and a few for my girls and friends - so it was time to learn a new pattern/ skill. I left the class saturday with a great new bag and since, I have finished 4 more. Nothing like spending my time between the fabric stores and my sewing machine. It is such a great therapy for me. Thank you John for being supportive of the sewing frenzy around here.

my energy has been healed

I am a believer. Just in general, i am open minded. Last week on that cold rainy tuesday morning (10.12) a friend called to see how I was doing, and to find out more about my surgery (not knowing when it was scheduled or the impact that it being cancelled was having on me) She listened and she shared some of her experiences with prior surgeries and how she had gotten thru them. She highly recommended that i see her Energy Healer, Ariel. It sounded like a great idea to me. Just within the last couple weeks I had a friend encourage me to try some alternative healing with chakras - but he lives out of town and couldn't give a specific recommendation here in Denver. This was the little push I needed to make it all happen.

I didn't call right away, i was interested, but not super anxious to go. When we did speak on the phone i scheduled my appt for the end of the month. But then later called back and said i was willing to move some things around so i could make it work and be seen as soon as possible. There was a cancelation and i went the next day.

I have tried to write this a few different ways to share the experience i had - but wow, it is difficult to share knowing there will be people reading this who will be skeptical or non-believers. I guess the important part is that it was a truly positive experience for me and I think it was just what I needed when things around here are in such a limbo.

She started by telling me that my throat was full of fear. (i have no question that is the truth) She said my color was grey and white. My heart chakra was broken and my soul was holding its breath. I did not have energy flowing out of my hands, feet or my head (like it should be). She told me that I was not ready for surgery. It was comforting in a weird way to hear that I was doing something pro active to be ready when the doctor is.

She also discussed how I can not tie my healing to the (any) date of the surgery. That having them change the date gave them power in my head to suggest that i then would not be healed. She said I need to have faith that whatever date the surgeon is ready to operate - and when my surgery is complete THAT is the date to reflect on as the date i was healed. I can have my positive thinking surround something other then the date. (hard- since I am so tied to "good" numbers and the feeling of numbers and dates)

I guess to sum it all up the greatest thing that happened was that - for one hour last friday I laid there and let someone guide me in positive thinking and positive energy. She spoke very positive, comforting words. She reminded me to receive. That is was OK to open up and let my friends and family give there healing colors, their support and their love to me.

10.12.10

I woke up this morning at 5:40am - which is very rare for me. I looked out the window and it was a cold and rainy, dark morning. (unusual for us in Colorado) The perfect day for a surgery (if you ask me) I had actually pictured it this way weeks before - which was weird when i saw the forecast. I laid in bed and thought about how today was going to be the day.... it was the day i had fixated on (meditated about - as best as i can meditate) and it was going to be a very positive day that was to be followed by healing, wellness and a cure for me. *sigh.

Today instead I got to lay around the house with Mia - who was home sick with a stomach bug. We got our piano tuned and we had take out Chipotles for dinner. Our soccer practices and games were cancelled because of the rain and it was a pretty good day to stay in and stay warm.

I have to say from here on out - every ache and pain feels a little bit worse. I wish it weren't that way, but i am nervous this is all borrowed time. That every day I wait i am getting worse and the nerve damage is more severe or more permanent.

I have so many people begging me to get a second and third opinion and use this time to educate myself further on the decisions i have made. I have heard that my doctors healing does not seem to be going as fast as hoped (hoped by me maybe) and this brings more uncertainty.

I will be doing some research, sending some emails, faxes - making phone calls and also doing some things to get my head BACK in the game. I got a call this morning from a friend who suggested an Energy Healer. I know it takes a certain person to be open to something like that - but that would be ME ME .. me me me.... i want to try that! Energy Healing! YES! I have an appointment next week!

it was an easy day -

i had found and hired a cleaning lady (and her husband) to clean my house while i can't. Letecia thought it would be best to come before my surgery so I would have a nice clean house when I came home. This is something that I scheduled a couple weeks ago and when my surgery was postponed I decided it was still a good idea to get my house cleaned. i have been straightening for the last month and a half but no deep cleaning so it really needed it. It was heaven to hear the vacuum cleaner running while I relaxed. (i cut fabric for more skirts and sat on my computer) 5 hours later they were done and my house had the best clean smell. I think it is cleaner then the day we moved in almost 4 years ago.
While Letecia was cleaning my house - Alice was texting me telling me that she had lunch for me. I admitted i deserved NO lunch. i was sitting with my feet up relaxing while people were scrubbing my messes. But - she insisted I still needed to eat. Here she came with lunch in a basket! Homemade cheddar brocolli soup with homemade crutons. and a vitamin water. YUM.

* update on this easy day. 10:30 tonight - i had dozed off in bed watching PawnStars when I heard that terrible sound of kid-puke. Took off down the hall hoping to find whoever it was in the bathroom. Instead Mia was standing in the doorway of her room - throwing up all over the carpet. my clean, germ free house that had the most wonderful smell of clorox and bleach was tainted. in less then 12 hours of the DEEP CLEAN. I can't help to think of how THIS would throw a wrench in me waking up at 5AM going to the hospital for surgery - and having to find someone to stay with Mia until she got better. one tiny reason to be glad my surgery is not tomorrow AM.

it is 10.10.10

10.10.10 for a number crazed person like myself is heavenly. It was suppose to be a grand sunday celebration getting ready for my surgery. The day to do a few last minutes and to get my head in the game. Since my surgery was postponed earlier in the week the planning of any get togethers was halted just as it started. Instead it was a lazy rainy sunday. We went to PhoYo to eat noodles and then came home and worked on Halloween costumes. I also spent the day thinking about the next great date that is within reach for my neurosurgeon. I am spending my time thinking good thoughts for 11.11. That will be 6wks from when they postponed my surgery for 5-6wks. fingers crossed.

STOP EVERYTHING!

8:56AM this morning - Kelly from DR OROs office leaves me a message. (while i am walking the girls to school)

"This is Kelly from Dr. Oros office and I am calling to cancel your pre-sugery apponitment with Kimberly tomorrow. We are canceling all surgeries for the next 5-6 weeks due to a medical emergency with Dr. Oro. Because of this, please call me back so we can reschedule your surgery."

There was a part of me that was ready for this. just a sliver of me. I have NEVER had an appt. at Dr. Oros office NOT get canceled. This happens for some reason. But i was hoping and praying that his surgeries were something that were untouched. This has been a long, long, grueling, emotional process. I had started my 14 day countdown leading up to surgery. Stopping certain vitamins, adding others. Quitting Advil - watching what I was eating and drinking - and getting myself really ready. I had just posted on FB last night - "ONE MORE WEEK". and because of that i have a long list of things to do. I came home this morning and took everything out of my hall closet, I was going to organize all of my clothes from summer to fall and have that all done. It was only when I had to find a number for John to call Cayce back at that I saw Dr. Oros office has called. I am completely and totally super fucking devastated.

I am trying to wrap my mind around this all being for a reason. but I am scared. I go thru the day staying busy, staying positive - chin up - one day closer to your surgery. Now to have that rug pulled right out from underneath me. When all is silent and I am laying in bed with my own thoughts I wonder if I will wake up in the morning. (and I always am so happy when I do)

What a total mind fuck.

* UPDATE *

the doctor is at home recovering from an accident. he is not willing to schedule any surgeries until his doctors give him the OK. The time frame I was given was initially 5-6wks and now I have heard it may be 6-8 weeks. The most difficult part for me right now is that they will not give me ANY date. The way I understand it is - they will call me in 4-5wks and let me know then what my surgery date will be. This is not a little roller coaster at the fair that I am riding. This is nothing that I signed up for. The toll that this is taking on my very fragile emotional state is paramount. So, I guess we are talking late November?