Monday, March 31, 2008

Guess what?!

So last Friday, a good friend of mine Christina, asked me to meet at her desk that she wanted me to meet someone. She introduced me to a lovely girl (woman) Betsy. Betsy was just Dx with Chiari 1! With the statistics what they are (1:1,000 have Chiari and only a fraction are dx or have symptoms) I never expected to work with someone else who had symptoms and was dx. I also have been in contact with a guy in a nearby city who is interested in a support group and doesn't currently know of any in MN. So I'm more pumped now than ever to get going on organizing this support group.

Thank you to everyone for your on going support and love!!


Sunday, March 2, 2008

A few pictures. If you have any please send them to me.:)

Here is another one a day after my surgery... You can see some of the spots they had me "strapped in" on my shoulders/neck and the dr.'s initials.

Today this picture was taken. Looking pretty good, if I do say so myself! It's funny when I see pictures of it because I don't see a day to day or any transformation until a picture is taken. To say the least I'm very happy with how well it is healing. Woot woot!

Staples!!! AGGGHHH! Franken head. (@ hospital) When I came out of surgery I was in pig tails (the nurses put them in) it kinda stuck and I had pig tails in for like 3 weeks. :)

I kinda like the look of the staples. It's like extreme piercing or something. Next time (yeah right..."next time" HA!) I'll have to get pink rhinestone staples.

12 days after they punched staples in...those suckers came out! Some staples were wiggly (like loose teeth) and ready to come out. Here it looks like a scar with bug bites around it.

Loaded up on meds, sore, and bored.

Tuesday, February 19, 2008

Finding and giving support to other Chiarian's

First I'm just going to give a quick update (a recap of last post). I'm healing very well. Hard not to with the amazing care and support from all my family and friends. Two and a half weeks after the surgery I decided that to take my self off of the pain narcotics. I was still in alot of pain but the drugs had worse side effects. I had a hard time sleeping and when I did fall asleep I had terrifying nightmares. I did speak to my Surgon's assistant and she suggested I try Darvaset for pain. It's a non- narcotic pain med. I took one when I woke up and one before bed. After a week I cut back to only one at night. You see, it's not that my pain is gone or that I'm a glutten for pain I just believe that one the drugs (even Darvicet) my body couldn't tell me when enough was enough and to rest so I would "over do it" more when taking pills. So hurting yes but being more awarwe of my body and limits. I have had an emotional time with all of this and can't wait to have no more limits to what I can and can't do.
With my head more clear and my eyes a bit more open I look back on all of this. The whole experience from start to finish. I remember the struggle of thinking I was crazy because no one knew what was wrong with me to being terribly frightened about the surgery. There were so many decisions that were hard to make and no one to talk to who had been through it all. So here it is...
I am going to beigin a new chapter of my journey. This chapter is about me helping others. Give them ( family and frineds too!) support, knowledge, and most of all some one to talk to. I'm sure there are Chiari support groups out there. My intentions are to help people who need those groups find them and to join or create a support group locally in MN for people affected by Chiari. Please leave a comment, call me, or talk to me with ideas or comments.

PS...Yes yes yes the pictures are comming but I have had problems putting them in my computer. Maybe computer wiz kid Roberto can figure it out for me. :)


Thursday, February 7, 2008

Out of the hospital and on the move

So here I am back at home and as my grandma has been saying, "Siting up and taking nourishment.". The surgery was a lot different than I thought it was going to be. The morning of the surgery I had to decide what kind of experience this was going to be for me. Long story short I went into the pre-op and the operating room laughing and cracking jokes and came out of the anesthesia laughing.
That was the weirdest part. I woke up as they were removing the int abater tube. I was coughing, spitting and laughing. Laughing. Huh. The only thing I can think of is because I went under laughing that I came to laughing. Any hoo.
The hardest part wasn't the surgery but the recovery afterwards. The surgery was actually the easy part. They poke me with a few needles and I'm out, then they poke me with a couple more and I'm awake. But managing the pain has been the hardest. For the first week I thought I was going to die. I really just felt like death. Then They discharged me from my hospital suite and sent me to my aunt Dee & Uncle John's. I was all kinds of sick for the first four days. And then it was as if a light switch, that no one ever told me I had in me, was flipped. I went from sleeping, hurting, and vomiting, to eating food, walking around, and smiling. I was thrilled when I turned the corner. But wait there's more...
Now this switch didn't take away the pain. All the switch did was take the sick feeling away. It seems that the better I feel the more I hurt. Here's what I mean. From the shoulders down I feel great, and now that I am off the pain narcotics my mind is clear. So here's my problem. If I sit on the couch all day I may feel lazy but I'm not too sore. For those of you who know me though know that I don't sit still well. (I think that comes from my perpetually moving mommy :) ) So All of me feels normal except my neck and head. Crap. So I push my self and push my self and do more than I should be with my body. And then I hurt. I go and go and go until I can't stand the pain any more and I have to stop and rest. I also went from being fully medicated on 3 different pain narcotics to flushing those down the toilet and only rely on one hopped up Tylonol before bed and then when I wake up.
But over all I would count my self extremely lucky and fortunate. Here's a quick break down;
My main neurosurgeon was absolutely the best I could have ever asked for, my secondary neurosurgeon was hot and very nice...and a very good doctor hehehehe, my family and friends all kept me going and were there for me every step of the way, and I am getting better.
The doctors say that in three months when I go back for a post-op evaluation and MRI's that I should be able to know by then if I have any left over symptoms.

So thank you to all the doctors and nurses but just as important...THANK YOU to all of my family and friends who keep me going. I'm not out of the woods yet but I'm on my way. I do still plan on blogging because I know that there is more to come. I am going to be putting pictures of my head on here really soon so keep in touch and feel free to keep reading!!

Mwah!!! All my love!!

Wednesday, January 23, 2008

Tomorrow is the day.

I have surgery tomorrow. I check in first thing in the morning...5:45 am. Early. Then they wheel my in exactly at 7:30am. I'm the first appointment of the day. I guess I have kinda found a calm. I have been having a lot of anxiety lately but in the last few days I have accepted my surgery. Don't get me wrong I'm not jumping around excited for my surgery but I've accepted it's going to happen and I'll get better afterwards and that in order to get better I have to go through this trial.

This trial... I was thinking about it all. Here I am always doing crazy things like skydiving, riding motorcycles, taking risks. And this surgery has less risk than some of those other things. So why do I feel so upset about this? I figured it is because I don't have any control over the situation. But my surgon has alot of experience and the nurses are very skilled.

I appreciate all the prayers and love and all the fantastic support!!! Here I go. Wish me luck.

All my love!!! xoxoxoxoxoxo-->


Monday, January 14, 2008

Don't worry.

I had dinner with my Dad and sisters last night. It was great. On the way home my Dad mentioned that he doesn't read my blog any more. When I asked him why his response was, "It's too hard to read." I never thought about that. Here I am writing about my pain and the things I deal with and I never thought of the impact it would have on those who care about me. To see or hear about someone you care about in so much pain and having to go through something scary can hurt you too.

Don't worry though. I'm a trooper. When I find my self afraid I will master my fear. Knowing that Courage isn't the absence of fear, but even with fear doing what you need to do, and moving forward is courage.

I take strength humor and love from all of you around me. When I write or speak about how I am hurting or struggling know that it isn't forever. And if you see me looking weak after my surgery know that with each day I will get stronger and heal.

Don't worry.

All my love,

Monday, January 7, 2008

Surg Update

So I have the surg date. Jan 24th. I get wheeled in bright and shiny in the morning. Oi. I'm trying to master my fear and have's a little hard though. I haven't had a drop attack in a while but my other symptoms have been overwhelming lately. So I have been keeping busy getting all the necc paper work done and making sure that every thing that needs to be ready is ready. I guess it's my way of coping. They say that I will be in my own room Friday late morning early afternoon. So I should be able to have visitors when I'm in my own room. Here is a bit more info...To contact a patient or get patient room information, call (507) 255-5123.Visiting Hours8 a.m. to 8:30 p.m.

Any questions or comments?