Today we celebrated the first birthday of our dear friend's son, Cole. Cole's daddy went to school with myself and Caleb, we've known him over fifteen years. He is one of a group of men that has all been friends with my husband and I since high school or before. These guys have been through it all together - parties, sports, girlfriends, breakups, fights, weddings, surgeries, births, and funerals. We've grown up together and now our children our growing up together:)

As happy of an occasion as today was, there was one person obviously missing, our sweet Ava. I worried about her mommy and daddy, knowing that she would have been part of this celebration had fate allowed. Then, I realized today must have been bittersweet for them, but on some level everyday must be bittersweet. So, I prayed for them. I prayed for something to lighten the weight that lies on their hearts, I prayed for days like today to be a little easier and as always I prayed for continued strength. I know Ava was with us today, seeing we are all together again sharing our love for each other, and appreciating it a little more than usual because of her. Ava gave us so many gifts and cherishing our time together is just one.

I'm learning that as challenging as my situation is, and as hard-fought as my journey has been, there is always someone going through something as hard, or harder. Life teaches lessons in different ways, but it always gets the message across. I wish there were a reason for some of these things, or someone to blame- anger is much easier than grief, at least then there's a focus for your emotion. Grief is a unrelenting, and unmanageable, grabbing a hold of you at the most inopportune moments. It can be grief over a lost loved one, a recent divorce, or the realization that you're life will always be consumed by pain and poor health. Life is bittersweet, I guess some days are just much more bitter than others.

Today everyone laughed, ate, and had a good time. We hugged a little tighter, we told each other "I love you", and we spent the day just being together. Ava is with us always, and today she smiled knowing we had remembered her lesson, we got her message.

Happy weekend:)

Whether you're going to a birthday party, Memorial Day BBQ, or just a cruise on the boat try to enjoy this long weekend, try to appreciate all the blessings that surround you. Think of the men and women over seas unable to be with the ones they love, remember the families sitting in a hospital praying for someone they love to recover, or the child down the street that doesn't have anyone to provide them with a safe, stable home. I know I tell you this all the time, "appreciate you life", but when I'm out in the world I just don't see anyone really enjoying themselves. I guess there are a few here and there, but overall people don't appear to be enjoying day to day life ... if we were all just a little happier, maybe the world would be a little better place to be.
I am guilty of letting things get the better of me, especially when my pain level is high. Without fail I feel bad about it later - whether it was snapping at Logan, being short with Caleb, or just letting something get under my skin that really wasn't worth it. I'm not sure how to eliminate this behavior entirely, but I'll let you know when I figure it out;) I do know it never helps, it rarely changes anything, and it always makes my head hurt worse after I've been upset.
I'm a firm believer that happiness is what you make of it - if you decide life is going to be hard, it probably will. I'm sure you know someone that even in the greatest moments can find something to criticize, then there is your friend that will find something good to say about any situation.. . who do you think is happier? Maybe if we all make an effort to find joy everyday it will eventually rub off on everyone else.
Enjoy your life, kiss you partner, hug your kids, call you parents and tell them you love them, walk you dog, drink a glass of wine, read a book, do something that makes you smile!

Summertime, and the livin's easy

Less than two weeks until Logan is done with second grade and our summer can begin! Summer has always meant time with my dad/uncle, swimming and boating everyday, lots of time on trails with family/friends and dogs, and long days of sunshine. I LOVE summer!! These are the memories I hold closest to my heart... the moments when my cousin and I were kids and our dads were home full time, we'd spend all day swimming, tubing, playing outside til the sun went down. We'd pretend we were surfers and stand at the very front of the boat with our arms balancing us as we tried to stay standing. We still play together on our lake, now there are bigger toys, and Logan is the little boy trying to surf at the front of the boat.
My dad turned 73 years old this year. He is active, vibrant, and ornery - which I am very thankful for because I cannot imagine my life without my father. The term "daddy's little girl" doesn't quite cover our relationship. He is my daddy, my friend, my advice giver, and resident worrier. My dad takes Logan and I to FL once a year for a great beach trip. We spend every second together, relaxing, playing on the beach, eating yummy food, and truly enjoying each others company. It makes my heart glow to think of all the memories Logan has made with my dad, who he calls GiGi.
Gigi and Logan have had many adventures together, but for the past few years one of their favorite things has been tubing. Gigi drives the boat, pulling Logan all over the lake until he gives up and is ready float in the warm water. They have so much fun together - all day water gun fights, playing catch, or just being silly. Our summer days together are my favorite.
Summer and sunshine make me smile, they make my body move easier and my head pressure lower. I love summer for its long days, warm waters, big BBQs, concerts under a starry sky, but most of all for the memories we make together. I realize my dad won't be here forever, and Logan will grow up someday, so this year I'm not going to take a single moment for granted. If you want to find me, I'll be in my bikini, floating in the lake with my family and friends - hard limeade in one hand and throwing my dog's ball with the other:)

All mothers worry. All mothers carry thoughts of guilt, worry, and inadequacy with them every day. One of my biggest source of these feelings is my illness. I worry that being sick will effect Logan in ways I cannot see or cannot help. I cannot imagine what it would be like to grow up with a mother disabled by medical disorders, a mother like me.
I worry he will learn to see pain as an excuse not to do the things that are expected of us in life. I worry he sees me as weak, needy and unable to care for myself. Our relationship has been profoundly effected by my illness. . . we lost two years of the past seven to surgery/recovery, and even more time to decline in my health prior to those surgeries. Don't get me wrong, I know I'm a good mother - I put my son first, his needs, his happiness, his health all come before my needs/wants. We read, we laugh, we talk, we spend a lot of time together, but he also spends a lot of time waiting for me to feel good enough to move. Its not the basic day to day needs I worry about, its what it all adds up to that bothers me.
Logan is amazing, he is confident, happy, healthy, smart, and kind. I just hope he never sees me as a mother that can't give him everything he needs. I hope he knows I have given him everything I have to give, and a little more at times. I feel blessed to have him as my son, I can only pray he'll always feel blessed to have me as momma.
My family isn't just Logan and I, this has effected my husband also. How much can I expect one person to handle? How many times can I expect him to pick up the pieces when I can't or deal with the never ending stress of chronic medical disorders? I know he loves me and would never leave me, but how long can I be the thing that makes his life harder? Its hard to know just being puts a burden on someone I love so much.. . it isn't just picking up the slack, but this puts a financial, emotional, and physical stress on him that otherwise wouldn't exist. I worry he will resent me, or that our love won't be enough.
Chronic pain/illness has profoundly changed all our lives, and all I can do is pray that it never changes the love we have for each other.

To dye for

I have loved Jerry Garcia since I heard my first Grateful Dead song when I was fifteen years old. I love live music, good guitar, and laid back people. I also love tie dyes:) I love to wear them, I love make them for me, and I love to make gifts out of them. However, as I got older I found some people see tie dye and think, "damn hippies." I started wearing less tie dye and more "grown up" clothes. Over the past few years the Bohemian look has come back into style, which means its not just for hippies anymore. I have started tie dyeing again, but not the many colored, crazy designs you see at farmer's markets. My colors/designs are bright and fun, but more subtle than traditional tie dyes. I've been making towels, shirts, and beautiful scarves. It gives me a sense of accomplishment when I'm looking at my finished product and know I made this piece of wearable artwork.
Being disabled and in constant pain is hard, frustrating, and monotonous. There are so many days I feel like life is just passing by me. Sometimes it is as simple as I'm in too much pain to function at all outside of Logan's care, so I spend as much time as possible laying down and get nothing done. Most days I have a few good hours during the day, am able to care for Logan, make dinner, and hopefully at the end of the day I feel up to giving my husband the attention he deserves. Several days it is somewhere in between, I don't really accomplish much, but my son and husband get my affection, a hot meal, and quality time with me. This is not the life I had planned, or wanted, but it is the life I have. I wanted to work hard everyday to love and support my family, I wanted a clean house, and lots of babies. At the end of the day I want to feel like I accomplished something, but that is not the case on most days. Its not about money, I feel satisfied with the unconditional love of my family, and the little joys in life - dark chocolate, snuggling up to watch a movie on a rainy day, loving on my pooch, an afternoon on the lake, a kiss from my husband.
The realization that I'm coming to is that I may never have the perfectly clean house, all the babies I want, or a full time job. I am also realizing I can feel good about my skills as a mother, wife, friend, and creative woman. I love photography (all the photos I post I took), sewing, writing, tie dyeing, and all sorts of other artsy/crafty things. Creativity can be a great outlet, but who knows maybe some day you'll see my scarves in a store near you! My life may not have turned out how envisioned it up to this point, but I can't help but dream that the future holds the best part of my story;)

Time to get mov'in

I've been trying to get going again. Trying to get on a healthy schedule of more sleep, physical therapy, meditation, writing, eating well, and staying organized. It sounds so easy, why does it feel SO hard?
Sleep has always been a challenge due to my nerve damage, so that is a work in progress. Writing has always helped me clear my head, I have been using this blog and a journal almost daily since I decided to get my life back in order. The rest of the list is a little different story...
I know daily PT(physical therapy) will help feel stronger, and have more energy, but its hard to force myself on the days I'm in a lot of pain. That is top priority right now, because physical therapy will allow me to have the energy to do all the other things required for me to function.
I've been reading a book about the medical benefits of frequent meditation, "Meditation as Medicine" by Dharma Singh Khalsa. I've been meditating, just not as frequently as I should. I will say, it makes a difference. I truly believe your mind, body, and soul benefit from this ancient practice. There is a lot of scientific information to back up that belief, and the book is filled with examples.
Eating well seems easy, I feed my son VERY healthfully, but those sweet cravings and bag of chips in the cupboard make it hard. On top of the normal diet issues, I am nauseous most of the time which makes eating unappealing.
My last goal, and probably the hardest for me personally, is getting/staying organized. I have a little difficulty staying focused on one task, a little attention deficit. My home is usually clean, but a bit cluttered... some papers here, miscellaneous things there, and it can get overwhelming fast. I have started this process, but it is also hard for me to get rid of things - clothes, books, toys, anything we might need later. (I am trying to be brutally honest with myself, and that is one of my blind spots.) I realize it can be irrational, but my parents taught me to keep things as long as its in good condition, reuse what you can, and don't waste money replacing what you already had. From here on out, I will do my best to get organized and let go of the clutter.
Life is hard enough to keep up with for "normal" people, being in constant pain has really slowed me down. My husband made a comment once about me moving slow while doing the dishes. . . I told him not to pick on a disabled person;) I move slow no matter what I'm doing, and thats okay. Running, jumping, moving quickly - not really my thing anymore. I take it slow and easy:)
Cheer me on, pray for me, hope I can find the strength to follow through on all my goals! Let's face it, I need all the help I can get.

Doctors and drama

I'm not exactly sure where to start with all the doctor drama... Until May 2004 I had no diagnosis, and no one would help me. I found the doctors at The Chiari Institute through WACMA and mailed my MRIs to them to be viewed. Within two weeks I got a phone call asking if I could be in NY in two weeks, they could help me! For the first time in the thirteen years I'd been having symptoms I had a diagnosis, doctors treating me with compassion, and hope I could find relief. The neurologist and neurosurgeon felt I was not quite symptomatic enough for the corrective brain surgery, so they recommended I go home and find a very good pain management specialist and knowledgeable neurologist. I was back in November for the decompression surgery after I gotten to the point of being unable to eat, sleep, or control my pain. I was down to 105lbs (I am 5'4"), and was unable to digest most solid food by the time I made it to surgery.
When I returned home from my May appointment, I found a young doctor who happened to be a neurologist/pain management specialist/geneticist. He was perfect! He was compassionate, honest, kind, knowledgeable, and didn't make me feel like a guinea pig. I stayed with this doctor for almost seven years - until this past February. He had put me on a very strong, twenty-four hour a day narcotic fourteen months prior due to a spinal fracture with nerve root impingement. Starting last summer I asked more than once to be weaned off this medication and he talked me out of it each time. Then, when I called for my new prescription in February they somehow just didn't get it ready by 5pm on Friday... I gave them a weeks notice (practice policy is forty-eight hours notice), I called Fri morning and was assured my prescription would be ready by 5pm, yet somehow when Caleb went to their office at 4pm that day it wasn't ready and they threatened him with security if he waited! I was told to find an ER when I went into withdrawal, but it wasn't an emergent situation according to their office. It was beyond disturbing the way that office treated my husband and myself. So, to make a long story short - my script wasn't available until Monday due to him not being in the office until after 5pm Friday, and I went into major narcotic withdrawal.
Two weeks later I had an appointment with this doctor. That morning I received a phone call from his office, "We were just calling to confirm your appointment to day with Dr. $#@! at 2pm. Are you coming in to discuss continuing your (medication name), or is this a follow up on your Dec. appointment?" What? Are you kidding me? I already confirmed this appointment, twice, and why should I tell you why I need to see my doctor of seven years? My husband wanted to go with me, and I am grateful he did. I thought he would be apologetic, give me some excuse, and try to move on- I was SO wrong. This man was rude, mean, and completely out of line. I can't go into all of it now, but for thirty minutes he was saying things like: "expecting too much of his office staff", that I didn't "look sick to them", and he was "the only doctor in the office that day, and was busy covering for everyone else." He then referred to a "letter you're going to receive in the mail with referrals," at which point my husband asked him if was discharging me as a patient. This doctor couldn't even look me in the eye and tell me he was discharging me! I was dumbfounded, speechless, hurt, and feeling abandoned. The worst part came after we left the office and my husband says, "I am 99% sure he was in the office that day. While I was waiting I saw him, but didn't realize who it was because he looks so different now." This broke my heart. . . the doctor I've trusted more than any other doctor ever had just knowingly allowed this to happen. I never did receive that discharge letter.
The next day I met with my new Rheumatologist and she agreed to take care of my pain needs for now, and continue to work on the rest of me. I started seeing her in December and LOVED her! She was thorough, knowledgeable about my disorders, and was willing to think outside the box for treatments (yoga, meditation, etc.). However, a few days before my April appointment I received a call saying she had moved to New Jersey. Yes, I said New Jersey. I did receive a discharge letter from her stating she had moved to New Jersey so her husband could take an amazing job opportunity. This was frustrating, but not emotional.
Now, it is May. I have met with my amazing family practitioner, and we are finding the best neurologist, rheumatologist, and occupational therapist we can find. For now I am choosing not to continue any twenty-four hour narcotics, I really dislike medications/injections, so we're going to hold off in pain management:)
It amazes sometimes how callus and unsympathetic people can be, especially in the medical community. I am still hurt by this doctor/his office's actions, lack of remorse, and blatant disregard for my well being. For a chronically ill patient there are times I am literally relying on the mercy of my doctor, and that is hard to except.