Today

Today I feel like shit. My pain level is elevated and it is hard to push through the pain when it is this high. I have been to physical therapy, iced my neck, taken my meds, and used my TENS unit this morning - but, my head is driving me crazy. I do not have time for pain today! My mother, son and I leave for NYC tomorrow morning to go to the Chiari Institute for my eighth trip in the last five years. I need to pack, clean, bake, and go to a meeting at Logan's school. . . I don't think it will all happen (; So, the feeling of a hot poker trying to push my left eye out, the pressure building at the base of my skull, and the constant feeling that I need to puke are really making it hard for me today.
This may be the most frustrating part of my disorders (outside of the constant pain)- I have no idea when or where I will feel so bad I cannot function. I may feel great one moment, and then start to feel a slight twinge of pain rising. Next thing I know I'm feeling like shit and what I thought I'd be doing has to wait. (FYI: when I say "feeling great" I mean that my pain level is a 1-3, and I'm not ready to hurl) I appreciate the fact that I can walk, and be take care of my son everyday, but sometimes it all just pisses me off. I want to be able to plan something, and know I will be able to follow through. I want to wake up and not have my first thought be, "my f#%*ing head hurts." So, today I feel like shit and I'm a little mad about it. I think thats okay - as long as I let it go and remember all the reasons my life is amazing.
I am ready to go see my docs and check in. I wish thats all it is - a check in appointment, but I will also have MRI's to look at why my leg hurts at the surgical site for my detether, why I'm vomiting regularly again, and a few other things that have been going on. I'm not ready to hear what they have to say. If they say, "This is all due to permanent nerve damage. This is as good as it gets" that kind of sucks. But, if they say, "we found something, you need another procedure" well, that sucks too. I guess I'll just have to wait and see.
Wish us luck, did I mention we're driving? Oh yes - my mother, six year old, and I are driving from Indy to NYC, Long Island actually. We are guessing 12-14 hours with stops(: I'll post after my appointment on Friday.

What choice do I have?

I cannot tell you how many times someone says to me, "You have an amazing attitude for everything you've been through!" or "All of that and you seem so happy." What am I supposed to do - curl up in the fetal position and wait to die. I appreciate the encouragement, don't get me wrong, but what choice do I really have?
This is how I see it: I could wake up every morning, in pain/nauseous, and hate my life, be pissed at the world and never leave my bed. Or I can wake up in the morning to a day filled with the love of my family, the support of my friends, and choose to be happy about my life - as is. I get to stand up on my own two feet everyday. I can spend my days caring for my son, and many other things that more disabled people than I could only dream of - there are soooo many people out there much worse off than me. So, I don't really see the choice. Its up to me to see the good in my life or otherwise I would be pretty depressed most days. There are days I am not happy with life, or cannot get out of bed due to pain, but every time my son smiles or my husband gives me a kiss I remember that I am one of the lucky ones.
I truly believe everything happens for a reason. I don't know why I have spent my life in pain, dealing with a wide range of symptoms, or had multiple surgeries - but, I find meaning in it all. In some ways all this has helped me to appreciate the smaller things, the good days, and the little moments of true happiness in my life.
Next time you wake up in a bad mood, or you're sitting traffic pissed off at driver in front of you - remember there is someone out there having a much worse moment than you. Take the time to realize happiness is what we make of it. If you see you're life in a negative way, happiness will be hard to find.

Limitations

One of the most frustrating parts is finding and accepting my limits. My body will only tolerate so much before it just decides to stop . . . my leg starts to hurt, my cranial pressure rises, my back aches, or a number of other possibilities. I want to do more, I want to go back to work, or be PTO president - but I can't guarantee from one day to the next I will feel well enough to take on the task at hand. Do you know how disappointing that is for me? In my head I can do it all, but my body just doesn't agree all the time.
This was not the plan. I was going to be a great mother, great massage therapist, and amazing wife - then things changed, life happened and the plan fell apart. I know - "the best plans often do", but when its your plan that phrase is NOT comforting.
So, all I can do is wake up each morning and try. I choose to enjoy my life, even though I have plenty of excuses to never leave my bed. I am in pain every second of every day, so some days I have to give in and just stop. Finding and excepting my limitations is an ongoing battle, but most days I win!

Have you ever seen a contortionist . . .

I've told you about Arnold Chiari Malformation type 1, but that is not the only diagnosis I have received in the past 6 yrs. . .
In April of 2004, after thirteen years of daily, constant symptoms I mailed my MRI's to specialists in NY. They responded in less than two weeks with a phone call telling me to come to NY - they think they can help me. I cried. I was so overwhelmed by the fact that a doctor not only believed me, but actually thought they could help me. I had been sick for so many years with no compassion, help, or effort from doctors in Indiana. . . in fact most wanted to send me for a psych evaluation. One even asked me "How is your relationship with God?" I stood there dumbfounded and said, "Its not my relationship with God that is the problem, it is my relationship with pain."
When I got to The Chiari Institute on Long Island it was as if the biggest weight in my life had been lifted. These doctors were kind, compassionate, thorough, and most of all they believed me! This group has Chiari patients from every state and 29 countries - these are the doctors The National Institute of Health works with for this disorder. I finally found a place where I wasn't going to be treated like a guinea pig, or a crazy person. I just wanted to be well enough to care for myself and my family.
Over the past five and half years I have received three major diagnosis: Arnold Chiari Malformation type 1 - 12mm (ACM), Ehlers-Danlos Syndrome (EDS), and a Tethered Spinal Cord (TCS).
Ehlers-Danlos Syndrome is simply having too much elastin in my collagen. So, anything that is not bone is entirely too stretchy. All my joints are lax - some would say 'double jointed', my skin is very stretchy, and there are several other signs of EDS. Basically I could be a contortionist. . . it isn't good for my joints to dislocate them, it does cause early onset arthritis and many other issues. I'm not going to bore you with all the problems this disorder has caused me, but it does cause me pain.
The moral of the story is: next time you see a contortionist and you think to yourself "how the hell did they twist themselves into that position?" Now you know.

Life changes - whether we like it or not.

My son, Logan, started first grade last week. To his delight he new several of the children in his class, and he had already met his new teacher several times. I on the other hand was NOT ready for him to start first grade. . . thirty five hours a week without my son?!? For a couple days I seriously contemplated home school, but if you know my son you would understand that he will be smarter than me by fifth grade. Logan is part of the gifted program at his school, and the only first grader in second grade advanced reading. The funny part is he is reading at a much higher level than that - he reads as well as I do. He does just about everything on a higher level than other six year olds. I am very proud of my son, and I have not pushed him at all to read, do math or learn unbelievable amounts of information. He decided at three that he wanted to be a paleontologist and has learned everything he can about prehistoric life . . . its not just about the dinosaurs.
Being disabled and currently symptomatic it has been a rough transition for me. I can't physically handle a regular job, I can't have another baby yet . . . I am just on hold. I miss Logan. . . we spent our days reading, playing, and having adventures. He helped me to feel useful, even on my worst days. He is why I get out bed on days I don't think its possible. Don't get me wrong - I want him to grow, learn, and one day have a wonderful life of his own, but I miss my baby boy sometimes. I have loved being stay at home mom. I have thanked God everyday for every second of that child's life and that I have been there to be part of it.
This is just a turn in the road on my journey through life - I know I will find my way.

Feeling Good (:

I stood on the beach in the hot sun and just watched - I watched the tide roll in and then out again, I watched a sea gull chase a small sandpiper off the sand and into the air, I watched my son search for shells on the sandbar with my father. As I sat and took in my surroundings I thought to myself, "Remember. Remember this moment on the days when the rain won't stop, and I can feel the pressure rising in my skull." In that moment I made a place in my mind I can retreat to anytime I need to remember life is more than this. Life is about the best moments - the ones filled with family, and friends, the ones filled with simple but true happiness. Hopefully all the bad days filled with stress and pain can be washed away by the memories made in the sun and sand. I love those days in the sun with my son, father, uncle, and aunt. We spend all our time enjoying life and each other - it just doesn't get much better than that!

My Companion

pain is my constant companion,
like my shadow it may not be easy to see all the time,
but if you look closely you will see it in my eyes.

some days it is a pang,
some it is agony.
this pest never leaves completely,
it may rise and fall
but it will never cease.

pain is like no other cohort,
it shows no mercy and offers no reason.
only the sharp, unrelenting reminder -
no matter where i go in life
my companion will always follow.

Morning

I have never been a "morning person", but since my surgeries I am even less of one. Each morning I wake up to feel pain before my eyes even open, usually there is some level of nausea, and all of my joints ache. I really dislike morning.
Since my son started AM kindergarten my mornings have changed. I try to be cheerful, patient, and of course on time - so far he has not been late to school, and has been an extraordinary student. However, this does not change the fact that I feel like shit. There are days I lay in bed wondering how I am going to get up and function through it all. That is when I remind myself how blessed I am to have an amazing child, loving husband and incredible family support. I get to be a part of my son's life everyday. . . I am the one lucky enough to guide him through life. So, I might move a little slower than most (especially in the AM), but I try to enjoy life to the fullest each and every day.

Zipperhead?

This is my first blog, and honestly it is more for me than anyone else. My entire life I have been sick . . . constant head pain, nausea, vomiting - I really don't need to get into all my symptoms yet. I wasn't diagnosed until I was 24, married, and had a one year old son. Then someone decides to tell me I need to have brain surgery. My brain was herniated through the whole at the base of my skull and hanging out all the way down to my second cervical vertebrae, this is called Arnold Chiari Malformation type 1. Seriously, no wonder my head has hurt every minute of my life since age twelve! So, the lovely photo up above is me seven days post surgery for my cranial cervical fusion, june 2006. I will not be posting any other scary pictures after this one, but if your going to understand why I would call myself "zipperhead" this is a must see.
I really, truly love my life. I am thirty years old, have a great husband, and a six year old son that amazes me everyday. I get to wake up every day and be part of their lives - there are so many people out there much worse off than me. Most of the time this is easy to remember, but some days its a little harder. So, this is for me. This blog is for me to remember on the bad days it will get better. On the good days it will remind me to appreciate how good life truly is.