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