Hello again . . .

I realize its been a little while since I've posted - sorry about that. After my trip to NY I was very overwhelmed and in a lot of pain. There was so much excitement I will have to give it to you in two posts. So, here is NY post #1:
The reason for our adventure to NY was to see my surgeons. I have been a patient at The Chiari Institute, on Long Island, for almost six years. We arrived on Wednesday, and my testing was scheduled for Thursday - all day. I spent my day in MRI, CAT scan, and X-ray machines getting my annual does of radiation. There was some blood drawn and then I was able to meet my mom and son for dinner in the city. I picked up my scans the next morning before my appointments with my docs. As soon as I looked at them I knew it was not going to be a good appointment. After all this time I've figured out what a good, clean MRI looks like and this wasn't it.
My first appointment was with a neurologist specializing in Chiari Malformation, Ehlers Danlos syndrome, and Tethered cord. We went over my scans and he told me a few things - 1. I have a pseudomeningocele, a large one. This is a spinal fluid leak with the fluid settling at the base of my skull around my cerebellum and spinal cord. 2. My lumbar spine was fractured at the connection between L-4 and L-5, spondulolysis. 3. My L-4 was moving forward trying to shift out of position, spondylolisthesis. The next appointment was with the surgeon and guess what he said? Oh, yes - surgery. We discussed my options, his various recommendations, and then he sent me back for more scans. It was Friday afternoon and he wanted them done as soon as possible, so I returned to the imaging center. I was then told to get a brace, go home and lay down.
So, this is why I have not be able to post. I couldn't sit at the computer for any period of time without increasing my pain level and I do not own a laptop. I ended up having surgery in Indy on Dec. 2, which makes me ten weeks post-op today. The tale of surgery and recovery is one for another post. . . which I promise to write in the next few days. It was an intense surgery and I am still recovering, but the worst is over. Now that my back has been corrected, its time to think about my pseudomeningocele and how it will be treated.
Through all of this my family and friends have been wonderful - bringing meals after my surgery, calling everyday to check in, helping with my son. My amazing husband has taken over all responsibilities. I am a lucky girl to have people in my life that give me love and support.

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!