Monday, March 29, 2010

Anklyosis Spondylitis Hurts INSIDE and OUTSIDE

I wake up some days and I hurt.  I am not talking about an ache or an annoying pain - I am talking about pain that wants to make you scream and cry.  Is it truly that painful - not necessarily.  It's just EVERYWHERE. It's in your muscles, your joints, your skin and your bones.  EVERYTHING hurts EVERYWHERE!  Those days are hard.  Those days I am not sure how I am ever going to be healthy. I  mean I get to the point that my bones hurt so bad I do not even want someone to touch me at all - even if it wouldn't hurt me.  That is what I would say describes AS for me.  Just that all over pain when I am in a flare up.  I just want to withdraw from the world and just pretend it's not there.

That is where I've been for the last few weeks - hiding.  Truth be told I am on the wrong end of this disease to help get myself healthy.  I am overweight, I do not eat right (and when I hurt I eat worse), I hurt too much to exercise and when I don't hurt too much - I don't want to exercise, and on and on and on.  I want to call my depressed friends and say "You are so lucky!  You can show your pain to the world!" - yet somehow I know that's not what I mean or want to say - it just that I feel having AS makes you and your pain invisible to the world.  I have been stomping my feet and shaking my fist. I am the epithomy of the fictious character who is in a field with her face upturned to God screaming - "Why me!  What did I ever do wrong!". 

Oh sure - I can easily point to several people I PERSONALLY know who are dealing with what I imagine is MUCH worse - but that sure doesn't knock down my pain or stop me from being angry at my situation.  So last week I hit the "well now what?" point.  I mean screaming, crying, denying .... all of that is not working... so now what?

Well people that is where God comes in for me - because I do not have the answers.  All I know is my husband was starting to worry and throw words around like "withdrawing" and "I am getting REALLY worried about you" - so I must have hit full on FAIL as far as answers go.  So who do you turn to when you are so withdrawn you can't hear your family and friends and no longer even want to try to find the answers yourself? Well that is where God seems to have other plans for me - he doesn't seem to have giving up in my future (at least not right now).

Now let me take a moment to say if you had told me any of this 5-6 years ago I would have thought you were a bit loopy.  I can't explain it - I can just tell you I stumbled into christianity with a resistance of a person being dragged to a burning stake - but through it all God won and my life is COMPLETELY different and things happen that I can't explain and well - it just works out (not in my timing or how I thought but dang it - it does work out!).

So that said - out of the blue I get this book on my library holds (that I do NOT remember putting on there) called "29 Gifts by Cami Walker".  It's not a christian book but a spiritual book.  It is from a perspective of an MS patient who was slowly killing herself by letting her disease take over her and her life and how she is taught about the "29 gifts" by a spiritual friend.  I am not all the way through but I can tell you this book is changing how I look at my disease and my life.  I can also tell you God puts things in your life just when you need them - even if you don't know that you do.

For instance, I broke down and called a nutritionist.  Though that may sound simple to you - that was a huge step in realizing I can't do this by myself.  I keep trying to do everything on my own but I finally realized I need help.  I need my family, friends, medical caretakers, ect to do this and do this right.

Then from that point on I started looking at my disease differently - I started trying to find the positive in things not what I couldn't do or how bad I had it.  In doing this I've started sleeping better and I was even able to spend a full day out and about with my husband (something we haven't been able to do in months - hell maybe even a year now).  Right after I had my amazing day with my husband I was down the entire day yesterday.  That normally would have thrown me into a poor me situation but instead I kept thinking "baby steps".  I had at least ONE good day this week - that's one more than last week.  By doing that - I was able to keep myself from plummeting into a hole of despair.

Do I think this book is healing me - no.  Do I think it will cure my AS - no. Do I think God has a plan and is steering me - yes.... What this book and this new attitude is showing me is that I do have GOOD days, that I CAN do things - it's just not what I am used to and it's not in my timing.  I am learning to take smaller steps - to enjoy my accomplishments and not to be so hard on myself when I can't do what I used to be able to do.

So am I going to be positive and happy and never be angry or upset about having AS - nope.  I am human.  Heck I can't even promise I won't be mad in a few minutes about all of this.  What I can say is that through simple beliefs, simple steps and acceptance I can get through this.  I can make it and that I can make a difference to those around me.

So God I don't know if that's the message or if there is something else you are leading me to but so far - this is where I am at.  Thank you - thank you for helping me out of my hole - even when I didn't realize I was in one.

For those out there with AS or other diseases/medical issues - I pray for you. I hope that you can trust God to catch you when you are falling so fast you don't even know if you CAN stop!  I also recommend you start looking outward and finding the good things - the little things that make living each moment of this life worthwhile.

If anyone has AS or wants to know more here's some links to check out:

Also if you want to check out the book here's the title and author:
"29 Gifts - how a month of giving can change your life" by Cami Walker

It's a Celiac Thing - You wouldn't understand!

So I have figured out Celiac is a harder disease than it looks from the outside.  See I had been sick for many many weeks.  Finally my GI decided to go in and take a look.  Lucky me he started at the wrong end - UGH! but eventually did an endoscope on me which lead to my diagnosis.

I have to be honest though - if I could go back in time to the point where I woke up and my GI was smiling at me saying "Guess what!  We figured it out!  You have Celiac - All you have to do is stay away from wheat, barley and rye.  So basically just give up bread and pasta."  At that point I would look my GI dead in the eye and then punch him square in the nose!  Not because I do not like my GI - heck he's my favorite doctor and I still go see him.  Not because Celiac is a hard disease to live with.  No it would be because of what my GI said from "All you have to do is stay away......"  Who was he kidding!  Gluten is in EVERYTHING!!!!!

(written previously - and apparently on a bad stomach day!!!)  Just thought I'd share :)