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.

Good or bad - its your choice to make.

Everyday we make choices in life- what to wear, how to raise our children, what to eat, how to spend our money, and the list goes on. Some of these choices are little things, and some are big enough to change your life forever. Many grownups make bad choices bringing consequences that aren't usually wanted, but always seem catch you in the end. Yet there are others that make all the right choices, treat others with kindness, do their best to make a good life, and in the end life hands them a game changer.
I know all about game changers with a health history like mine. Often people will talk to me about how amazing/healthy I look, or they "can't believe how well you're doing after all those surgeries!" What they don't know is inside I'm in pain, right that very second, and I probably just want to go lay down some where. My other dirty little secret is I may be good at looking "normal" in public, but when I get home, I'll lay down for twice as long as I was out of the house. I have been in pain for every second since I was twelve years old and I'm really good at hiding it. . . I don't need my son to see me like that every second of the day, I don't need everyone feeling sorry for me every time I leave the house, I also don't want to be the downer every time I see my friends/family. My eyes tend to give me away, but you have to look closely;)
Obviously, I am not the only person in pain, or having difficulty in my world. Some people have no control over their discomfort and I am more than happy to support them in their time of need. However, being that my situation is completely out of my control and I do everything I can do to make the best with what I have- I get frustrated when people I love make choices that lead to discomfort, and then want me to support them in their mess. If you want my support, shouldn't you be willing to help yourself also? Whether it is a health or personal matter, don't act so surprised when your life is spiraling out of control and you had a hundred warning signs along the way. I mean really, did you think not taking care of yourself might magically fix all your health problems? I know several doctors that have said otherwise repeatedly. Or this little shocker - when someone decides they don't want to be married to their husband anymore, they shouldn't expect him to continue financial support.
I know, I'm being harsh, it just really irritates me. Don't get me wrong, I've made bad choices, I've done things that I'm not proud of and regret. I also took responsibility for those actions and was honest with myself about how I ended up there.
I guess what I'm saying is - life is hard enough without our help. When you make choices that lead you down a hard road, own up to it and do something to change it for the better. We all make mistakes, that's how we learn - unless you're not learning, because you think you know better;)

How sweet it is. . .

I've written a lot about my son, and about my disorders, but I haven't written much about my husband. Caleb and I have known each other for seventeen years, (I am 32yrs old and he is 31) have been a couple for over twelve years, and married for almost nine. We met in high school and were friends, but didn't start dating until a few years after we graduated.
I am so grateful for my husband. He knows me better than anyone in this world and loves me anyway;) Caleb has been loyal, supportive, honest, and loving. He is an amazing father - Logan adores him. They have an amazing connection that you only get when you have a bond like the one they share. As a family we have been through things people don't "normally" deal with in life. My first major surgery, brain surgery, was on Logan's second birthday. Since then I have had three major surgeries on my skull, spine, and spinal cord. Most young families are worried about childcare, college funds, or which car to buy. We were flying to NY to have brain surgery, trying to navigate through medical bills, and permanent nerve damage. At the same time I was so sick it was hard for me to take care of myself, let alone care for Caleb and our home. He has seen me lying in hospital beds in misery and he has been there on my very best days, but through it all he has loved me.
He takes care of me - not just financially or physically, but he is strong when I need strength, he is behind me when I need support, and he listens when I need a friend. He is funny and silly, but most of all he makes me happy. I probably don't show him enough appreciation, I hope he doesn't ever feel taken for granted. I feel lucky to have a husband that I can love with, laugh with, parent with and grow old with. . . no marriage is perfect, no marriage is amazing all the time, but to be able to trust and depend on each other has never wavered.
Once, the summer before he graduated high school, I told him "you're going to make some lucky girl a wonderful husband one day." Little did I know I would be that lucky girl:) Little did I know just how lucky I would be to have him.

My little angel

I have written a lot about feeling good about my life in spite of my disabilities and pain. Sometimes I get tired of fighting my pain, and allow myself to stop...stop physical therapy, stop meditating, stop eating healthy, stop icing, stop writing, just stop. These are all things I know will help me, but there are times I just can't make myself do it anymore. I always take care of Logan, that never stops, but mothers have a tendency to put to themselves last. In the past several months I stopped- its hard to admit, but its true.
I was recently given a reminder that life is a gift and it is my responsibility to make the most of it. Ava Jean Bryan, my little angel, gave me so much in her four months of life. Ava showed me fighting is what you do when you want to get better - even when you feel tired and scared. She reminded me in the power of prayer and love. Ava is courageous, tough, and so sassy:) You could see it in her big, beautiful eyes. She also brought her mother and I closer in ways we could have never imagined.
I wrote briefly about her story a few days ago, but I will probably mention her often as she is frequently in my thoughts. Ava's parents are two of our closest friends, we love them like family. When she was in Riley Hospital we visited her and them- especially on surgery days, or in moments of need. In the end she passed peacefully in her parent's arms, with close family/friends in the waiting room. Ava taught us all about keeping life in perspective. . .this baby girl, fighting with all her body could offer, and we all walk around acting like life is a given. I think of her everyday, and I'm sure that will never change. I feel blessed that her parents allowed me to be so close to Ava and them throughout this journey.
So, its time to embrace those lessons and do what it takes to help myself. This means physical therapy routine fives days a week, icing daily, yoga, mediation twice a day, wearing my TENS unit, eating healthy, sleeping enough and doing things to help me clear my head like writing this blog. Wow, that sounds like a lot to add to my mommy/wifely duties...I can do it. With Ava as my angel I can do anything:)