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.