Friday, December 21, 2007

New info vs. old misinformation

So my world has been turned upside down. Last Thursday I had my appointment with my neurosurgeon at the Mayo. I learned that much of what I thought I knew was wrong. I learned that Chiari is not a brain malformation but a skull malformation. Basically my skull didn't form correct and is too small. My brain is formed correctly and looks good but my skull is too small to hold my brain and now my brain has herniated in through the base of my skull (the Posterior Fossa) and is causing all kinds of problems. Well the Neurosurgeon said that the only symptoms he can verify that are being caused by the Chiari directly are the head aches and the head and neck pain. At this point in time there are no tests to determine if my other symptoms (problems...including the drop attacks) are being caused because of the Chiari. My Neurosurgeon says that we'll know if they are related if after the surgery they go away or not. If they don't go away then he said I may want to look into having additional tests done to determine if there is something else that may be causing the symptoms. So yeah now that I know that there is something wrong and what it is I decided to have the surgery. He also told me that in some cases if people who have Chiari choose not to have the surgery and tough out have had a Syrinx develop which can cause paralysis and then the surgery would be mandatory. So don't have surgery and maybe wake up one day and have one side paralyzed and have to wait in that condition and have to have surgery to correct it. So I decided to have the surgery and to take the chance to not hurt anymore. I'm scared but I know it will be a chance to get better...I've got to buck up and be brave. My surgery will be toward the end of January.

Finding my "Brave"...
-AP

Sunday, December 16, 2007

Fresh from the Mayo

So I had my appointment at the Mayo for my second opinion. The neurologist apt was on Thursday. It went pretty well. I really like my neurologist but he wants me to do more tests to help determine if my Drop Attacks are from the Chiari or if something else is causing it. I had an appointment with my neurosurgeon on Friday but it ended up having to be rescheduled for this coming week Thursday because they needed me to have these new tests run before I spoke to my Neurosurgeon. So not a whole lot of new news. I have been weighing my options of surg because the doctors have all agreed so far that I am a good candidate for surg and that I have a good chance that the surg will be successful. I'm just not sure... More news after this Thursday cross u r fingers.

-AP

Tuesday, December 4, 2007

Closer

So Last week I had a thought that I haven't had yet. "What if they ask me if these symptoms are something I think I can live with? Can I live with it instead of surgery?" I realized that I have alot of big decisions to make. Surgery is a big deal and there are serious risks involved, but the chance to not have anymore bad days... are the risks worth it? My first reaction is yes. So can't do anything until I find out what the Neurologist says. The closer it gets the more nervous I get. All the silly and scary "What if's" run ramped through my head.

My Myo fascial therapy has been helping me manage the pain better. And! A friend of mine gave me 20 free visitor passes to the YMCA so I can try out the therapeutic pool there. I guess it is warmer than a normal pool and is supposed to be great for helping muscles. We'll see. I just am tired of not exercising.


Breath by Breath...

-AP

Friday, November 23, 2007

Holiday & myofascial

So Thanksgiving was great. Good food and even better company.
During the vacation Roberto said, "You sleep alot." LOL. This coming from the guy who would sleep until 11am every day of the weekend if he could. I responded, "Well if I'm up at 7 or 8 am on the weekend and I go to bed around 11pm...if my body says 'nap.' then a little nap after dinner isn't too bad." Now exact words are hard to remember but I'm pretty sure it was along those lines. :) I have had some aches and pains (normal) but I have really had to slow down this weekend. See, I take after my Mother. A slow day or a day for taking it easy is doing everything you normally do except you sit down and watch a movie in the evening. I have a hard time just sitting and being lazy on the couch for a whole day...but! I did it this weekend. I didn't have a choice spending the weekend with his family I didn't cook or run any errands. Nothing. I helped pick up the house and tend to the pooches but really I didn't do anything. I thought of it and laughed because it was kinda like training for recovery. Hahaha. If I do have to have this surgery then I will need to spend alot of time just relaxing and laying around. I guess I can justify anything. Anywhoooooo...

I had my first myofascial release apt on last Tuesday and it went well. I really like my PT. We spoke of my symptoms and what I would like this therapy to do for me. I told him of the pain and the symptoms and how I just need help managing the pain with out drugs and maybe help alleviate some of the symptoms. He did mention that there is always a chance that this may not help, but we won't know until we try it. So coming out of my first appointment I was sore and achy but optimistic that with a few more sessions that it will help.

I hope every one had a really nice long weekend and I look forward to hearing about all of your holiday weekends and adventures.

-AP

Monday, November 19, 2007

Getting back to positive!

I spent time with my Mom this last weekend. We had a great time,but my Mom was defiantly doing the Mom thing. She would tell me that I shouldn't be playing with the dog and to just relax. We sat and watched a few movies which was great but every time I made a sound or moved she asked if I was ok and tried to adjust my pillow or head. I love my Mom more than words can describe so all that just makes me giggle. She understands the pain I feel and just wants to be able to do something to make me better. She was right and I did over do it a bit this weekend but I rack it up as "Worth it". So here goes... I'm going to start listing the things I can do.
  • Swim (finally found a way I can exercise with out strain!)
  • Go to movies
  • shop
  • Play with the dogs and kids (just not too hard/wild)
  • Write
  • Paint
  • wrestle a little
  • Prepare meals
  • Joke
  • Go out
  • Play pool
  • Play darts
  • Shake my groove thang

Now I know that on a Bad day I may not feel up to some of these things but this is just a small list of things I can still do. Yeah yeah there are things I "Can't" do. But not for long just for a short while. Soon I'll be back to my old self. Silly and more silly. I get down sometimes (not the dancing kind of "getting down..well yeah I do that sometimes too..but any who...)when I feel sad or discouraged I just have to Think about what I can do and get out and do them! I'm more than happy to have company, so let me know when you are available!

Keep on truckin'! -AP

Wednesday, November 14, 2007

Distractions...lack of

On Monday I woke up and my left side was numb. Side of face, arm , leg...My brain was awake but my body wasn't co-operating. Damn. I called work and left a message stating I would be in a bit late. It wore off and I went into work. Lately it has been so hard for me to get out of bed.

I was thinking about how People have reacted when they found out that I had Chiari and what symptoms I have been having. Most state "If you need any thing please let me know." But there isn't a whole lot I need except distractions and friends and family who support me. Several people stopped talking to me. Stopped calling and stopped wanting to hang out. I know that alot of it is because they don't know what to say or do and they feel like if they can't do anything or if they don't know what to say then they just stop communicating. It's how they cope. That's hard. I feel like I'm a lepper.

I decided last Friday that I was going to do everything "normal" last weekend. Do everything like I did when I didn't have symptoms. Big mistake. I have been paying for it since. It really sucks to be 25 and be too tired or hurt too much to go down town or go to every concert I want to. I want to do stuff and hang out but I haven't had much as far as distractions lately. This is just something I have to understand...I may be limited but others aren't and what 20 something would pass up a fun night out to sit around and watch a movie or do something mellow?! Yeah. I need a hobby. LOL! Maybe I can join a quilting group..hahahaha. Lots of soft things to catch me if I fall.

Distractions I look forward to every week:
-Nip tuck night, a few people come over and we watch and laugh and say eeewwweee!
-Saturday, I get to sleep in and take naps.

Yup I deff need a hobby or something.

-AP

Friday, November 9, 2007

Doctor updates.

I found out yesterday that my appointment with Mayo coming up next month won't be just one day. They advised me to be prepared to have evaluations and tests for 3-7 working days. I figure that's what...34 days or about 5 weeks away. I know it isn't that far off but it seems like forever. So going there will be an adventure. My evaluation on that Thursday will determine if they will do more tests or if they want to bring in specialists etc. . I guess time will tell and until then try to stay distracted.

I spoke to a good friend of mine last night and learned that some of my previous co workers, who are dear friends, learned of my blog. This was also the first time any of them found out I'm not...well...not quite right. :) I'm really happy they found it and are reading it. It's nice to find out there are more people out there who care and want to support me then I thought. For those of you, my dear friends who have just found out please read on, this is for you.

Explanation:

When I first found out I had Chiari (pronounced: Key-ar-ee) I didn't believe it. I thought, "Me?! No I'm in great shape...I can't have something scary like this!" So I didn't tell hardly anyone. I didn't want people to find out and treat me like I'm sick. The "Poor you." and the "Awe. " Those of you who know me know I am a clown. I'm not shy about attention from that but this was not the attention I wanted. After I came to grips with the fact that yes I do have this and it is getting worse and I need to be fixed. I got mad. I stopped answering my phone and didn't want to talk to anyone. But now...I'm OK. I want to talk about it and answer any questions that you have. I know that some of your first instinct will be the same as mine, go to the Internet and scour for any info that you can get. But know that there is more I can tell you. There is some incredibly scary stuff online. Some true and some of it applies to me but other stuff not so much. Yes, I am sick and it is progressive. Yes, it is scary. But, I'm not terminal and surgery may fix it. This is brain surgery and I will have a decent amount of recovery time. The good news is I have support from all of you. So gimme a call or drop me a line. Let me know how you are and ask anything on your mind.

I'm ready when you are. And please feel free to leave a comment on any blog. I like to read them.

Thanks to every one in my life who is so supportive and wonderful. Thanks for the time you take and have taken to keep me distracted and going!

MWAH!! -AP

Wednesday, November 7, 2007

At home

I woke up this morning dizzy and still exhausted after a full night sleep and my neck was hurting pretty bad. There have been other mornings that I though about calling into work but didn't. Today I needed to listen to what my body was telling me.

I feel upset about staying home though. I'm not getting any work done or getting paid or earning any PTO for when I need it. Most of me is screaming "Suck it up and go to work!" But I know if I do , my body is going to only hurt more. I wish there was something I could do from home so I was still earning money.

I have been worrying so much about bills and money lately. My family has been telling me not to worry about money and bills and that it will be taken care of. I'm just not ok with the thought of other people having to take care of not only me but my bills as well. I'm a proud person and for someone, anyone , to tell me that they will take care of my responsibilities makes me hurt inside. I know that there is a time that you just have to let people help you, but, I don't want to need help. Much less admit that I need help.

-Finding me...-AP

Sunday, November 4, 2007

Scared.

I have gone through many emotions. I denied I had it. I got madder then I can tell you. Now I'm scared. There is this big "if" looming over me. "If I have surgery"... I have seen pictures of decompression surgeries. I have family and friends reassuring me , through research they have done, that the surgery will go well and I will be better after it. I don't know what I need to hear but I haven't heard it yet. I do need to hear from them that it will be ok... but I'm still scared.

I have willingly jumped out of a perfectly good airplane days before I walked in my high school graduation. I ride motorcycles and plan to track race or train some day soon. I do all kinds of risky things that have a similar risk as this surgery and am not afraid. But I'm scared of this. Maybe because when I do risky things they are all at my hand..in this case I have no control. What must I do? What do I need to hear? To not be scared?

The title works. A journey indeed. Thanks for the comments. It puts a big smile on my face. :) It is great to have so much support.

-AP

Thursday, November 1, 2007

Tick tick tick...Waiting Game.

Mayo called me yesterday. The soonest they could get me in for an consult is Dec 13th. Wow! That seems forever away. But I have to realize that even with everything happening with me and my symptoms that there are people who come from all over the world to been seen and treated at the Mayo. I only have 1 1/2 hour drive. I'm counting my blessings.

When I received the call yesterday I requested to be put on a waiting list for appointments if they open sooner , but, unfortunately they don't have a waiting list. The woman on the phone stated that I could call in to the appointment line to check if any dates or times open up before then. So every day I will be calling them to find out if any sooner times have opened up.

Mom says that the physical therapist she is seeing states that there is a manual therapy that can be done to loosen the deep tissue and muscle in my neck and base of skull to ease the pain and increase the success of the surgery. I'll have to look into that. Anything that can help with pain and headaches, that's not drugs, is worth looking into. Way to go Mama!

FUN NEWS!

So yesterday I took extra time before work to do costume make up and look like a scary witch. It turned out pretty good. There were some people who didn't even want to look at me. LOL! I was thrilled when the costume judges chose me as the 1st prize winner!! Woohoo! That made spilling 1/2 a crockpot of chili on the floor of my car that morning a little better. Phew... That was a mess after work. Nothing a little screaming in the solitude of my car can't help. :)


Keep on keeping on!

-AP

Tuesday, October 30, 2007

Another spill

Today at work I took a spill.

Let me set the scene for you. Mmmmm in one hand a delicous bowl of oatmeal I just made and in the other hand a hot,full, cup of water for my tea. I get two rows away from my cube and my body goes. The legs and arms stop working. I fall so hard that my ankel twists and I scrape up my ankel pretty bad. Worse yet I try to get up but my body still isn't working. Lying in the middle of the walkway with oatmeal and water thrown everywhere I try a third attepmt to get up and am successful. I am so embarrased and mad that I am shaking. I pick up what's left of my bowl of oatmeal and my 1/2 full glass of water and bring them to my cube. The whole time I am looking around praying no one saw. I don't really want people,who don't know me at work, to find out about my Chiari because...I don't want the label of "The girl who is sick and falls down". I go back to the spill scene and start to clean up the oatmeal. Make it back to my cube after the clean up. I was still mad when I sat down but after some kind and encouraging from Roberto and Lindsey I felt better.I can laugh about it now but it is so hard to loose control of your body. I feel helpless when it happens.

One breath at a time. I can't do anything but try to live with it now and I'm not going to let it beat me. So I chose to be in a better mood today. Even if my symptoms are kicking my butt I can still choose to try to be in a good mood. (Nip tuck is on tonight!! Woohoo! Who can be in a bad mood with that on tonight?! :) )

-AP

Sunday, October 28, 2007

Beat it or let it beat me.

I had a heart to heart with Roberto yesterday. He is good at telling me how it is but not hurting my feelings with it. He was encouraging me to take the hard stuff in stride because there is so much good in and around me. So now I am trying to put that in play. Yeah, I have this bad stuff going on but I need to try and find the good and focus on that.

The good and not just that I have several great people around me to encourage me but other things unrelated to my health problems. Like, I have a new job that I just started and I really enjoy it. I look forward to starting training soon. Halloween is almost here and I am looking forward to that. Then a whole bunch of holidays come! That means family and friends and celebrating! I am still able to go out...just in more mellow short bursts. Lots of things left to enjoy! And this won't be forever even if it's hard now. It's not forever.

The word I hear that most often describe me is "Bubbly". I am going to have to keep on being positive...just to remember my boundaries and limitations and work within that. Even though there are things that are hard for me or that I can't do any more, I have to remember that if the other doctors agree with Dr.F then the decompression surgery might fix it all to where I won't have symptoms anymore and I can go back doing what I do with out these current limitations.

Basically, I'm not going to let it beat me...I can beat it!! Let's keep positive! Woohoo!!


PS. Thanks for going to the show with me Caroline!!! It was great!!

-AP

Saturday, October 27, 2007

No...not crazy.

This morning I watched the Extreme Makeover Home Edition About the Carter family. It was emotional as the show tends to be. But this time it really hit home for me. To hear what they have gone through it really helps to know that I'm not crazy or alone.

So many times people have asked me, "Well are you sure you aren't creating this in your head?" or "Maybe you should stop researching this for a while and see if any thing feels better." . All of these comments hurt and are frustrating. How do you explain to people that you hurt so much and the symptoms that you feel that just keep getting worse are not in your head. I remember questioning myself and thinking, "Maybe I am making this all up. Maybe they are right. Maybe it is all in my head." I stopped reading about Chiari on the internet and even tried to stop talking about it. I still hurt and my stress level went up which made me hurt more.

NO!! It is not in my head! No, I am not making up symptoms! I don't know why it all started and why it is progressing like it is but it is.

-AP

Friday, October 26, 2007

Filling you in...



At the end of July I was getting a hug before leaving for work and when I was released from the hug I didn't have control of my arms or legs and I fell to the floor. After a few moments had passed I regained control. Around this same time I began getting headaches and neck pain which I attributed to the stress of my job and sitting in front of a computer all day. About 3 weeks later I had another drop attack at home. The headaches and neck pain became more frequent. What finally got me convinced to go get checked out was I had a drop attack at work soon after. I was embarrassed and frusterated. "What is wrong with me?" I thought. I have played this question over and over in my head. As I was checking into the urgent care they stated that they would put me at the top of the list. I felt so bad for the little runny nose babies waiting to be seen as well that I was thrown in front of them in line.The urgent care doctor told me that she didn't find anything wrong with me and to stop sitting on my feet. She also advised me to see a regular MD and be checked out for MS. Two weeks go by and I go in to see an MD about being tested for MS. This doctor requested an MRI which I promptly schedualed and went in for. Three days after my MRI I received a call with the results. "Hello Amanda? Hi, I just am calling with your MRI results. We have determined you don't have MS." I breathed a sigh of relief. Before I could get too comfortable with that answer the voice on the other line added. "But you do have Chiari Malformation." She went on to spew some medical terms which I didn't understand. So basically she told me the diagnosis and spelled it for me and that was the end of the conversation. I didn't know what to do. I did the only thing I knew to do when I don't know or understand. Yup, scour the internet for answers. I found a ton of information. Lots of which scared the hell out of me. They did schedule one more MRI to determine if I had a Syrinx, which I am fortunate enough to not have. But they didn't tell me what to do next. I battled with nurses and schedualers to try to be seen by a neurologist so I could have a consult and begin trying to fix me. After calling every day for a week and a half I had an apointment. Since then I have had several more drop attacks and mo
re menacing symptoms. I began having these bad headaches, extreme fatigue, head and neck pain, I feel dizzy often, and have trouble getting my eyes to focus. My limbs also feel tingly and numb on occasion.Today I had my second appointment with Dr.F,my first neurologist. After a second consult and reviewing my EEG, MRA, and all three of my MRI's he determined that my symptoms were not from seizures or blood vessel problems and that in his professional opinion it was in fact the Chiari causing my symptoms and the surgery would be the only treatment to correct it.Being a good doctor he also encouraged me to receive a second opinion and speak to a neurosurgeon.

Dr.F's nurse is coordinating with Mayo Clinic to to get me in to a neurologist and a neurosurgeon to get additional opinions. So that's where I'm at. Waiting. Taking it breath by breath.

-AP