Many of you know that I have been searching for answers. Over the past 2 years my health has started to go down hill. But over the past year it has completely spiraled. I am at a point where I struggle to get out of bed, and am relying on pain killers to get through things. So on Thursday I went to Cincinnati to see an Orthopedic Surgeon, Dr Durrani, and then on Friday a Geneticist, Dr Tinkle. I have had numerous tests done before I went. I am going to outline hear as much as I can about these visits. It is a ton of information and my head is still swimming. For those who know about EDS this is not new news, but for people who have never even heard of EDS, I will do my best to explain.
When I went to see Durrani he felt I have Cranial Instability. This is what Brooke has. The difference...hers was caused by Chiari and surgery, and mine was caused by Ehlors Danlos Syndrome. My head is wobbly and extends to far back, and to each side. Over the years I have worn down the joints and bone, and now I am in constant pain because of this. He feels I need a fusion. The question is whether I need a C1 to C2 fusion, or a fusion that starts at my Cranium base and goes down to my C2. He needs more scans. I go back in 3 weeks to have another flexion and extension MRI and a 3-D CT scan. In the meantime he has ordered a cervical collar that I need to wear to promote some stability in my neck. We are hoping to do the surgery as soon as possible. Hoping for August or September.
After we talked about my neck, he moved onto my lower lumbar spine. I have to apologize because he gave me a technical name for my lower back problem but I can't remember it. My head was spinning by this point! But basically the vertebra's in my L spine are disintegrating. This he felt was due to EDS as well. But he could not make the EDS diagnosis, Dr Tinkle had to. He wants me to receive injections in my L4-L5 spine. This will not fix the problem but hopefully will keep them from disintegrating more. Plus I have to wear a back brace. He told me that my other joints are probably doing similar things. As I listened to him reading my symptoms and course of action into his recorder, I was overwhelmed. After he left the room I said to the nurse, "It sounds like I am falling apart!" She said, "Well you kinda are." :(
I was completely exhausted when I left. I was so thankful to crash with the kiddos and my friend Monica, and her sweet Danica at our hotel. I knew I would have to grasp even more info the next day. We headed out early Friday to see Dr. Tinkle. Brooke and I were both supposed to see him. I also had Aidan with me. He examined Brooke first. Thankfully she does not have Ehlors Danlos Syndrome. Poor girl has enough to deal with! He then checked me. They take a very in depth family history and ask many questions about my early years. He then performs a test called the Beighton Score. You have to meet certain criteria for them to give you an EDS diagnosis. The main symptom is hyper mobility in joints which I have. This may not seem like a very big deal, but over time it is. There are many many other symptoms as well. Basically a person who has EDS is lacking collagen in the their joints. Their joints become loosey goosey. Think of a rubber band that is overly stretched out. So my joint should be tight, but they are not. And over time my muscles have tightened around my joints to overcompensate. This is why I have a bulge on my neck. My muscles have tightened up to protect my neck from just letting my head fall over. Dr Tinkle feels the worst of my symptoms is my neck and agrees with the direction Durrani is going. He also feels my lower spine needs help. After these are worked on I need to have my jaw looked at because I have bad TMJ. He is worried if I wait to long my jaw will just lock up. He wants me to not eat real hard foods or take big bites. He also told me he could splint my joints and have me in PT once I do a few more things with neck and back. He added a few new meds to my list, and is watching me for a syndrome called POTS. He is not diagnosing me with it yet, but may in the future.
Dr Tinkle wanted Aidan to be seen. He had him squeezed in to see Dr Neilson. He performed the same tests on Aidan and confirmed that Aidan has EDS. My heart sank! He has to have PT and OT to work on some muscle and joint issues. He also needs inserts for shoes as his feet are rolling in and turning his knees and hips in a weird position. The good news...sometimes boys grow out of EDS. So our hope remains. Plus now we know so we can avoid contact sports and things that would stress his joints. I want to help him to not be where I am at 35.
Honestly...I feel like my head is going to explode. Not just from it hurting, but from all this info. I really liked both of these docs! Dr Tinkle finished my sentences for me. It was like he knew me since I was a child. He understood my symptoms, and validated the pain I have felt. They both were also very honest. There is no cure for EDS. People with EDS tend to continue to deteriorate over the years. With my back and neck where they are right now, the likelihood of a wheel chair in my future is high. It could be soon it may be years. Needless to say I will not get better, I will only learn to live daily and cope with the symptoms. There are things to offer relief. We started slowing down because of Brooke, but now our lifestyle will drastically change. This is hard for me as I love to visit friends, have a clean, organized house, and be involved. The one amazing thing is God has put two amazing women in my life who are on the same medical road as me, and live only a short distance away. The fact that our lives crossed paths is totally a God thing!!! He has made it possible for us to love and support one another. I ask for prayers for our fam, but please also pray for my friend Kathy as she is having fusion surgery in August, and my friend Monica, who needs a miracle and a house to live in soon. Through Him all is possible!
A blog dedicated to my daughter Brooke who has Chiari I Malformation
Saturday, June 23, 2012
Sunday, June 17, 2012
Father of the Year Award Goes to....
I am not at all where I wanted to be today. I am in bed. I can barely move. My head, back and joints are making it painful to walk or even lay comfortably. The plan was to go to church with my parents, and then go to their house for dinner. I wanted to spend time with my dad and my hubby to remind them how special they are to me. Instead, I do not even feel like cooking. My hubby and children have eaten leftovers all day. And yet my hubby just tells me to lay down and rest. My dad told me to not worry and he would see me soon. Both of them proving once again...I am a lucky girl!!!
Last week I was on the phone with my aunt, my dad's sis. She was telling me how she wanted to give us a gift to help pay on our mortgage. (We are still fighting to keep our home.) I was in awe and kind of at a loss for words. When people give so generously I want them to know how grateful I am, and yet the words always fail me. I tried to thank her but it did not seem adequate. She said, "Growing up Pop always told us if we had extra, you share with family. That is what we are doing. You are family!" My dad has told me the same thing many times when he has helped us. They learned from my PopPop the importance of taking care of family. I was privileged to know my PopPop. He was a truly awesome man. I loved listening to him sing Irish songs like O Danny Boy, but even more I loved to hear him sing Ava Maria. Even though i did not live close to him and grandma, I learned how he but his faith first, and did a beautiful job of loving his family always.
So many amazing men have poured love into my life. But the one who has been by side from the beginning is my daddy. I can't even begin to express how much I love my dad. How much I respect him, and how proud I am to be his daughter. My whole life I have wanted to please him and make him proud. He has been a shining example of faith, love, and family. And yet most days, I do not do a very good job of telling him how much I love him. It is hard for me to imagine a world without my dad, and I am so glad I do not need to.
One of the best memories I have of my dad is his crazy stories. My dad always had a yarn to spin. As a young girl I was horrified that he normally chose dinner time when my friends were over to start a story. He would start out "Back when I was a young lad we were headed out west with the wagon trains...." I would slowly try to slip under table or yell out, "Dad!" None of the above me true of course. He grew up in Philadelphia and then south Jersey. He spent summers on the farm with his grandparents in Oklahoma. His Grandpa had a gift for story telling too. Someday I want to write the stories down that I remember. They are wonderful and make me smile just to think of them. My dad taught me to be a story teller. My kids ask all the time..."Mom tell us the story about..." I love that they are learning my childhood through me, just like I learned about my dad through him.
Another wonderful thing I remember is my dad singing Toora Loora to me. Again this was a family tradition passed down. My dad's grandparents come over to the US from Ireland. This is a family heritage I am very proud of. This song was sung from a mother to son, father to son, father to daughter, and now daughter to her children. When I hear the words to this song I am moved to a simpler time as a little girl.
Toora Loora- An Irish Lullaby
I love that my dad has always been creative and intelligent. I always would ask crazy off the wall questions. I would test by dad's patience to the core. I always argued with him on politics, religion, and may other things. I yearned to be an individual, and make my mark on the world. As time went on my dad patiently taught me how to do this without ripping walls down.
I want to close with 2 stories that make me smile. When my dad was a young boy he had a paper route. Every morning he would get up to deliver papers. One the way he would stop at his grandparents house that lived close to him. His grandma would feed him a nice breakfast. He would then stop off at either a friend's house or an aunt's (can't remember which one) and have his second breakfast. After the route was complete he would head home to find his mom cooking breakfast, where he would eat his third breakfast. He was beginning to become a little pudgy. His mom became suspicious and started to investigate only to discover her son was indeed eating very well!
My dad brought home a dog named snoopy. His father was not a fan of dogs at all. He told my dad he could keep the dog, but was not happy about it. One day my PopPop was out in the yard and saw the neighbor's dog pooping in his yard. He marched over to tell the neighbor this was unacceptable. As he began to give the neighbor an ear full in his neighbor's kitchen, snoopy walks in a pees on the floor. Needless to say my PopPop turned around and headed out of the kitchen. :)
I am so thankful for my dad and all he taught me! I love you Dad!!! Happy Father's Day!
Last week I was on the phone with my aunt, my dad's sis. She was telling me how she wanted to give us a gift to help pay on our mortgage. (We are still fighting to keep our home.) I was in awe and kind of at a loss for words. When people give so generously I want them to know how grateful I am, and yet the words always fail me. I tried to thank her but it did not seem adequate. She said, "Growing up Pop always told us if we had extra, you share with family. That is what we are doing. You are family!" My dad has told me the same thing many times when he has helped us. They learned from my PopPop the importance of taking care of family. I was privileged to know my PopPop. He was a truly awesome man. I loved listening to him sing Irish songs like O Danny Boy, but even more I loved to hear him sing Ava Maria. Even though i did not live close to him and grandma, I learned how he but his faith first, and did a beautiful job of loving his family always.
So many amazing men have poured love into my life. But the one who has been by side from the beginning is my daddy. I can't even begin to express how much I love my dad. How much I respect him, and how proud I am to be his daughter. My whole life I have wanted to please him and make him proud. He has been a shining example of faith, love, and family. And yet most days, I do not do a very good job of telling him how much I love him. It is hard for me to imagine a world without my dad, and I am so glad I do not need to.
One of the best memories I have of my dad is his crazy stories. My dad always had a yarn to spin. As a young girl I was horrified that he normally chose dinner time when my friends were over to start a story. He would start out "Back when I was a young lad we were headed out west with the wagon trains...." I would slowly try to slip under table or yell out, "Dad!" None of the above me true of course. He grew up in Philadelphia and then south Jersey. He spent summers on the farm with his grandparents in Oklahoma. His Grandpa had a gift for story telling too. Someday I want to write the stories down that I remember. They are wonderful and make me smile just to think of them. My dad taught me to be a story teller. My kids ask all the time..."Mom tell us the story about..." I love that they are learning my childhood through me, just like I learned about my dad through him.
Another wonderful thing I remember is my dad singing Toora Loora to me. Again this was a family tradition passed down. My dad's grandparents come over to the US from Ireland. This is a family heritage I am very proud of. This song was sung from a mother to son, father to son, father to daughter, and now daughter to her children. When I hear the words to this song I am moved to a simpler time as a little girl.
Toora Loora- An Irish Lullaby
I love that my dad has always been creative and intelligent. I always would ask crazy off the wall questions. I would test by dad's patience to the core. I always argued with him on politics, religion, and may other things. I yearned to be an individual, and make my mark on the world. As time went on my dad patiently taught me how to do this without ripping walls down.
I want to close with 2 stories that make me smile. When my dad was a young boy he had a paper route. Every morning he would get up to deliver papers. One the way he would stop at his grandparents house that lived close to him. His grandma would feed him a nice breakfast. He would then stop off at either a friend's house or an aunt's (can't remember which one) and have his second breakfast. After the route was complete he would head home to find his mom cooking breakfast, where he would eat his third breakfast. He was beginning to become a little pudgy. His mom became suspicious and started to investigate only to discover her son was indeed eating very well!
My dad brought home a dog named snoopy. His father was not a fan of dogs at all. He told my dad he could keep the dog, but was not happy about it. One day my PopPop was out in the yard and saw the neighbor's dog pooping in his yard. He marched over to tell the neighbor this was unacceptable. As he began to give the neighbor an ear full in his neighbor's kitchen, snoopy walks in a pees on the floor. Needless to say my PopPop turned around and headed out of the kitchen. :)
I am so thankful for my dad and all he taught me! I love you Dad!!! Happy Father's Day!
Saturday, June 2, 2012
One Foot in Front of the Other
I have really been reminiscing lately, trying to remember a time when my body worked right. I mean it is has always had quirks, but for the most part I felt good. Since I have had my mri, I keep opening the pictures and staring at them. I do not even see what the docs see. I do not see the cysts on my spine. But what I do see is this enormous bulge on my back, and slumped shoulders. For me this is a gruesome and terrifying discovery. Silly? Well probably, but I am questioning when the dancer with beautiful posture left my body. When the aches and pains became so unbearable I have to take pain killers, and lay around most of the day.
I started ballet and tap at 2. I loved gymnastics, and could not wait to start pointe. I walked with books on my head to straighten my posture. I sat watching tv with shoulders back and head up. I was the girl in dance class who could perfectly lift her leg over her head without bending it. I could do spreads and splits. I could hold my front foot in a split and completely roll over. I impressed people by doing splits up walls. Sure I heard and felt my hips pop in and out, but I did not figure it mattered. I heard my ankles creak and crack when I was up on pointe, and heard my teacher rave about my beautiful arched foot. Little did I know my body was slowly attacking itself. I just kept fighting back against it.
As I have gotten older I have had signs that things are a little off. Like when I hold a purse, my arm goes completely numb. Or if I get on the floor, my knee will pop and I will have to move it around to make it quit hurting. Sometimes my wrist does this weird clicking noise, and I have to smile even when I want to scream "ouch!" And lately whenever I look up or down for an extended period, I feel a rushing in my head and the feeling of passing out. But I just figured...."This is who I am." And went on. But with Brooke's diagnosis I hear many stories. I have learned this is not normal. I do not need to keep enduring. So I have looked for help. I feel like I am at the beginning of a very long road, and quite frankly do not know if I feel like finishing. I am tired, and just want answers. I stare at the MRI hoping that the answers will just pop out. Sadly all that pops out is the hump on my back! I feel like Colin's father in the Secret Garden. I feel like hiding in my room, and pulling the curtains.
I know I am not perfect and never claim to be. I mean we all find flaws in ourselves. I have always disliked my double chin, and white skin that never tans. But all in all I am happy with who I am. I am thankful for the life I have been given. It is funny how a picture or a hurtful word from someone can rob us of feeling serene in our lives. I started this blog for Brooke. I wanted to share her story and raise awareness for Chiari. What I have found while doing this....it has helped me grow. I feel like this is a place for me to be honest, to confess my failings, to share experiences, to educate, to learn myself, and to connect. If you would have told me I would some day have an online journal, I would have laughed. I wrote a journal faithfully as a young girl. Many of my journals were discarded by me. I did not want anyone reading them later and finding out I had flaws. Here I am now openly telling you flaw after flaw. One of the things that bugs me the worst is most of these things are not things I can fix. I can try to make the situation better, but the past will never be my future again.
I am thankful to know their are people who daily lift us up in prayer. I am thankful that my kids love puzzles, books, and watching movies with mama. I am thankful that my husband loves me for me, and takes care of me when I hurt. I am thankful that I can throw open my curtains to let the sun in. In the book The Secret Garden, Mary, Colin, and his father realized to live in the moment is key. To relish in the sheer beauty of life, and not focus on the little burdens that change us on the outside. I am trying to remember this daily, and put one foot in front of the other.
I started ballet and tap at 2. I loved gymnastics, and could not wait to start pointe. I walked with books on my head to straighten my posture. I sat watching tv with shoulders back and head up. I was the girl in dance class who could perfectly lift her leg over her head without bending it. I could do spreads and splits. I could hold my front foot in a split and completely roll over. I impressed people by doing splits up walls. Sure I heard and felt my hips pop in and out, but I did not figure it mattered. I heard my ankles creak and crack when I was up on pointe, and heard my teacher rave about my beautiful arched foot. Little did I know my body was slowly attacking itself. I just kept fighting back against it.
As I have gotten older I have had signs that things are a little off. Like when I hold a purse, my arm goes completely numb. Or if I get on the floor, my knee will pop and I will have to move it around to make it quit hurting. Sometimes my wrist does this weird clicking noise, and I have to smile even when I want to scream "ouch!" And lately whenever I look up or down for an extended period, I feel a rushing in my head and the feeling of passing out. But I just figured...."This is who I am." And went on. But with Brooke's diagnosis I hear many stories. I have learned this is not normal. I do not need to keep enduring. So I have looked for help. I feel like I am at the beginning of a very long road, and quite frankly do not know if I feel like finishing. I am tired, and just want answers. I stare at the MRI hoping that the answers will just pop out. Sadly all that pops out is the hump on my back! I feel like Colin's father in the Secret Garden. I feel like hiding in my room, and pulling the curtains.
I know I am not perfect and never claim to be. I mean we all find flaws in ourselves. I have always disliked my double chin, and white skin that never tans. But all in all I am happy with who I am. I am thankful for the life I have been given. It is funny how a picture or a hurtful word from someone can rob us of feeling serene in our lives. I started this blog for Brooke. I wanted to share her story and raise awareness for Chiari. What I have found while doing this....it has helped me grow. I feel like this is a place for me to be honest, to confess my failings, to share experiences, to educate, to learn myself, and to connect. If you would have told me I would some day have an online journal, I would have laughed. I wrote a journal faithfully as a young girl. Many of my journals were discarded by me. I did not want anyone reading them later and finding out I had flaws. Here I am now openly telling you flaw after flaw. One of the things that bugs me the worst is most of these things are not things I can fix. I can try to make the situation better, but the past will never be my future again.
I am thankful to know their are people who daily lift us up in prayer. I am thankful that my kids love puzzles, books, and watching movies with mama. I am thankful that my husband loves me for me, and takes care of me when I hurt. I am thankful that I can throw open my curtains to let the sun in. In the book The Secret Garden, Mary, Colin, and his father realized to live in the moment is key. To relish in the sheer beauty of life, and not focus on the little burdens that change us on the outside. I am trying to remember this daily, and put one foot in front of the other.
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