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:)

Stormy days

The rain is coming down, thunder is rolling, lightning cracking, and the house is dark even though it is almost noon. Today I was going to clean, put away laundry and try to get my house a little less cluttered. As I sit here in pain, pressure rising in my head, I wonder how I will be able to accomplish anything today. All I want is to be a good mother, good wife, and good friend, but sometimes just thinking seems impossible.
It's hard to explain what its like to feel pain at all times. . . in every moment, good or bad, I am in pain. Once I wrote a poem about my lifelong companion and how it may lay in the corner quietly or it may scream so loud I cannot pay attention to anything else. My son and my husband are who really suffer. I am the one feeling it, but they have to watch me feel it, live with it, and pick up the slack for me when I just can't. I know it sounds funny, but as a mother I would rather endure it myself than watch the ones I love suffer. It is hard for me to imagine Logan having my medical issues, so lets pray that he doesn't:)
I have prayed for years to have a second baby... to be honest, its what I want more than anything else in the world. However, this is a reality check, can I really feel good about bringing another baby into this situation? I didn't have any diagnosis when Logan was born, but now I do. So, in the spirit of being honest with myself, what is the best choice for our family? I have 25 years if damage built up which created a lot of permanent damage, with education and prevention that wouldn't have happened. I could have lived a relatively normal life had we known when I was younger.
As I sit, listen to thunder, and watch the rain run down the window I wonder how I will accomplish the many things I would like to today, tomorrow and throughout my life. Its hard to let go of dreams because you are sick. . . sometimes we have to let go of something to be able to see the path hiding behind it.

The truth be known . . .

Sometimes it can be hard to be honest with yourself - brutally, deeply, truly honest with yourself. I've known for a long time that my life will be filled with pain, nausea, and the many daily symptoms I endure. I just never really let myself think about what it would really be like to live the rest of my days in this body, until recently.
October 25, 2010 Ava Jean Bryan was born. She was jaundice, but apparently healthy otherwise. Ava's mommy and daddy were thrilled:) After Thanksgiving Ava was having problems keeping down milk and was fussier than usual. Her pediatrician thought she had Acid Reflux. Just before Christmas Ava went in for her normal checkup, but she was dehydrated. The doctor sent her to the hospital for overnight hydration and observation. As Angie held Ava in her arms after the middle of the night feeding, she coded and after being resuscitated was rushed to Riley Hospital in Indianapolis. Ava was admitted to the Pediatric ICU on December 22. At that time she was placed on a ventilator to take stress off her heart. Her heart was enlarged, she was only pumping 10% blood out instead of 50-60%, and she was having many other complicated problems with her health. After a long fight, a few surgeries, a few strokes, and a month on the heart transplant list Ava passed on March 2 surrounded by family/friends. She taught show many adults about courage, strength, love, prayer, and compassion. Ava is a beautiful angel reminding us to keep life in perspective and not be blind to your blessings. For two days we surrounded her with love, prayers, and tears as we said goodbye to our angel. It was a beautiful way to say goodbye... lullabies playing, family praying for peace, hugging/kissing on her, taking her in as long as we could. Now it is our job to carry her memory with us and never forget the gifts she gave us.
There was a lot thought about Ava's future and her quality of life. At one point, Angie asked me how I felt about my future and my own quality of life. Obviously our health issues were very different, but dealing with a life long, disabling disorder is hard on anyone emotionally. Have I ever really, absolutely accepted that this is my life?
The second trigger was this past Tuesday. I took my son to the pediatrician and she said it is time to have him screened for Chiari Malformation and Ehlers-Danlos syndrome. Again, I knew this day would come, but it still took me off guard. I just hadn't been truly, painfully honest with myself - Logan could have my disorders.
These are two truths I have been aware of, but not really wanted to face head on.
I am truly thankful for the many blessings in my life. I must also allow myself to be just as realistic about other parts of my story...finding balance and honesty within myself.
"Peace comes from within. Do not seek it without." Buddha