Since we live so far from family and friends I have wanted to start a blog to keep everyone updated on our life and maybe shrink the distance between us. I figured I'd be posting funny things the kids said or did at first and our comings and goings. So my first entry will be a big shock to you as it was (and is) to me.
Everyone has heard the saying "When life gives you lemons, make lemonade." Most of us have our worries and fears and figure if something goes wrong it could be one of many things...cancer, a death in the family, an accident, money problems, loss of a job, infertility...In fact many of us have experienced these things already. But what if life hands you something totally unexpected? What do you do with that? Grapefruits are deceiving; they look like a big orange. But biting into one is not a sweet experience. I don't know of anyone who really likes grapefruit juice; it is nothing like a big orange. It is different than it looks on the outside. (I do eat grapefruit but only with a big spoon of powdered sugar on top!) Sorry, got off track there. What I'm trying to say is I've been handed something totally unexpected, not even on my radar screen. It is life-changing and I need to figure out what I do with it because my life as I envisioned it will most likely not go as planned. So what do you do with a grapefruit?
For those of you who know me well, you know I have had a lifetime of weird conditions or complaints. The doctor's common comment to me is "you're too young to....(fill in the blank)". I have been chasing symptoms all my life. As soon as I feel I have a handle on my health something new pops up or an old symptom comes back. You also may know too, that childbirth for me was what no doctor had seen before (for the first 2 at least, I call the 3rd a miracle birth). I've gone from feeling crazy (wondering if things are in my head or if I'm just not as strong as everyone else and is a wuss when it comes to handling life), to swearing off all doctors for comments such as "Labs are normal, your just a tired mom ". There is a lot more I could write about with all that, but maybe another day. And to many people, I look like someone in optimal health. As the doctor told me, I am very athletic and kept myself in good shape so that has abled me to compensate well for it all. I also put on my best face when I'm around others and I drive myself to go beyond. But for the last two years I can't even drive myself to do everyday things. That is one thing that gave me the courage to seek help from doctors again; I didn't feel I was being the mom my kids deserved or that I had always wanted to be.
I have read a lot of health books and tried new things to help myself. (I kid that I should have gone into medical research.) I wouldn't be where I'm at without all that study and research, and everything I tried not working. All of that led me to where I now find myself. After years chasing what I was sure was a thyroid problem, my labs finally came back that I was hypothyroid. I was in tears, thinking this was it, I'd found relief! The medicine only helped slightly so last year I began my quest again and found a doctor highly recommended by others and on the leading edge when it came to thyroid research. He also is leading the way for helping those with fibromyalgia, and I figured maybe that could be part of my problem too since other family members have been told that. I figured I would go in and he'd say "Yep, your thyroid needs more help, here's a pill." and my life would be back on track. I had so many symptoms throughout my life I figured must in someway be related to each other, that I wrote the poor man a novel of my life and health. He graciously sat down and read through most of it with me. He started doing some weird tests on me in his office, and asking me questions that I kept saying yes to. He knew things I hadn't even told him!
Dr. Flechas comes back in the room and says "Your brain is too big for your skull". I wait for the punchline...I'm waiting, waiting...it's not coming! He is still talking! Is he serious?
Jump ahead 3 months...I am still in shock somewhat but also relieved. I have some doubt still that this is really the answer to all my health problems, years with the doctors I have had will do that to ya--don't know if I can trust them (though I have found compassionate ones along the way, they just had no textbook answers to help me). I'm hopeful that I can get better, and more than just stopping my downward spiral. It turns out it is true, IT IS ALL IN MY HEAD!
I have now seen an expert in this rare disorder. I have many more tests next week to make sure of the extent of this disorder. He has diagnosed me with Chiari & cervical stenosis (and along with that, and probably caused by the Chiari and stenosis, NMH or POTS and neurogenic bladder). Basically my skull is not big enough for my brain. My brain is squished in there against my brainstem and basic functions, etc for my whole body are affected. After the further tests we will discuss what to do...beyond trying to manage the symptoms all that I can do is brain and spinal surgery. Dr. Rosner said he'll do two major surgeries if that is what I choose.
I don't know when surgeries would happen, etc. but I wanted to let everyone know what has been going on because I have greatly slacked over the last while staying in touch with everyone. But now you know why! I am surprisingly more and more at ease with all this, (except for the financial impact of it all that Chad and I both are concerned about.) I know God is watching over me and has led me to this answer. Please keep us in your prayers! As for my family, there is a genetic link so be aware of the symptoms and if you do suspect it you need to find an EXPERT in it to get the proper diagnosis and help.
I will keep you updated (and try to go with my original plan of updating you about our life) as best I can as time/energy permits. I think I'll go eat a grapefruit now with lots of powdered sugar on top!
Everyone has heard the saying "When life gives you lemons, make lemonade." Most of us have our worries and fears and figure if something goes wrong it could be one of many things...cancer, a death in the family, an accident, money problems, loss of a job, infertility...In fact many of us have experienced these things already. But what if life hands you something totally unexpected? What do you do with that? Grapefruits are deceiving; they look like a big orange. But biting into one is not a sweet experience. I don't know of anyone who really likes grapefruit juice; it is nothing like a big orange. It is different than it looks on the outside. (I do eat grapefruit but only with a big spoon of powdered sugar on top!) Sorry, got off track there. What I'm trying to say is I've been handed something totally unexpected, not even on my radar screen. It is life-changing and I need to figure out what I do with it because my life as I envisioned it will most likely not go as planned. So what do you do with a grapefruit?
For those of you who know me well, you know I have had a lifetime of weird conditions or complaints. The doctor's common comment to me is "you're too young to....(fill in the blank)". I have been chasing symptoms all my life. As soon as I feel I have a handle on my health something new pops up or an old symptom comes back. You also may know too, that childbirth for me was what no doctor had seen before (for the first 2 at least, I call the 3rd a miracle birth). I've gone from feeling crazy (wondering if things are in my head or if I'm just not as strong as everyone else and is a wuss when it comes to handling life), to swearing off all doctors for comments such as "Labs are normal, your just a tired mom ". There is a lot more I could write about with all that, but maybe another day. And to many people, I look like someone in optimal health. As the doctor told me, I am very athletic and kept myself in good shape so that has abled me to compensate well for it all. I also put on my best face when I'm around others and I drive myself to go beyond. But for the last two years I can't even drive myself to do everyday things. That is one thing that gave me the courage to seek help from doctors again; I didn't feel I was being the mom my kids deserved or that I had always wanted to be.
I have read a lot of health books and tried new things to help myself. (I kid that I should have gone into medical research.) I wouldn't be where I'm at without all that study and research, and everything I tried not working. All of that led me to where I now find myself. After years chasing what I was sure was a thyroid problem, my labs finally came back that I was hypothyroid. I was in tears, thinking this was it, I'd found relief! The medicine only helped slightly so last year I began my quest again and found a doctor highly recommended by others and on the leading edge when it came to thyroid research. He also is leading the way for helping those with fibromyalgia, and I figured maybe that could be part of my problem too since other family members have been told that. I figured I would go in and he'd say "Yep, your thyroid needs more help, here's a pill." and my life would be back on track. I had so many symptoms throughout my life I figured must in someway be related to each other, that I wrote the poor man a novel of my life and health. He graciously sat down and read through most of it with me. He started doing some weird tests on me in his office, and asking me questions that I kept saying yes to. He knew things I hadn't even told him!
Dr. Flechas comes back in the room and says "Your brain is too big for your skull". I wait for the punchline...I'm waiting, waiting...it's not coming! He is still talking! Is he serious?
Jump ahead 3 months...I am still in shock somewhat but also relieved. I have some doubt still that this is really the answer to all my health problems, years with the doctors I have had will do that to ya--don't know if I can trust them (though I have found compassionate ones along the way, they just had no textbook answers to help me). I'm hopeful that I can get better, and more than just stopping my downward spiral. It turns out it is true, IT IS ALL IN MY HEAD!
I have now seen an expert in this rare disorder. I have many more tests next week to make sure of the extent of this disorder. He has diagnosed me with Chiari & cervical stenosis (and along with that, and probably caused by the Chiari and stenosis, NMH or POTS and neurogenic bladder). Basically my skull is not big enough for my brain. My brain is squished in there against my brainstem and basic functions, etc for my whole body are affected. After the further tests we will discuss what to do...beyond trying to manage the symptoms all that I can do is brain and spinal surgery. Dr. Rosner said he'll do two major surgeries if that is what I choose.
I don't know when surgeries would happen, etc. but I wanted to let everyone know what has been going on because I have greatly slacked over the last while staying in touch with everyone. But now you know why! I am surprisingly more and more at ease with all this, (except for the financial impact of it all that Chad and I both are concerned about.) I know God is watching over me and has led me to this answer. Please keep us in your prayers! As for my family, there is a genetic link so be aware of the symptoms and if you do suspect it you need to find an EXPERT in it to get the proper diagnosis and help.
I will keep you updated (and try to go with my original plan of updating you about our life) as best I can as time/energy permits. I think I'll go eat a grapefruit now with lots of powdered sugar on top!
7 comments:
Becky, all I can say is... wow! Who ever heard of such a thing? While I know that you've had your health issues over the years, I'm afraid that distance has leant to inattention. You can bet that you and your family will be finding a regular and prominent place in our hearts and prayers. Please keep us as informed as you feel comfortable doing.
Chad’s Aunt Linda called this past weekend to say that she wants to take the lead in organizing a family reunion for next year. You may have heard about this through Chad’s mom, but I hope that it comes to pass, and that you guys can find a way to get there. Let me know if I need to start a non-profit organization to raise the funds! It would be sad without your family.
We’re all hanging in there, though it does get ragged at times. James is just a couple of weeks away from leaving on his mission—can you believe that? He enters the MTC on June 25th. He is SO excited! I may be his dad and all, but I might as well just flat state that he is going to be a great missionary. We’ll all miss him, but I do detect a certain amount of coveting amongst the siblings over his soon-to-be unoccupied bedroom. Jacqui and Jelly just got back from Youth Conference this afternoon, and will be going to Girl’s Camp next week. After that they have been invited to individual skills camp and team camp for basketball and volleyball. Jelly, Ben and Julia are all on swim team again this year—last year Julia took first place in the county (in her age group) for backstroke. She and Jelly both have a fantastic natural stroke. Gabe is trying T-ball (pretty comical), and Baby David is two and SOOOOO precocious and adorable. Ingrid—somewhat like you—has long been plagued by odd and mysterious ailments (not to compare), and continues on her quest for the correct balance of healthy eating, exercise, and balancing the seven ring circus that is our family. I’m getting old, a little thicker around the middle, a little thinner around the top… Working too much, playing too little. It’s quite a life, isn’t it? (Oh, you’re in North Carolina; I mean “idn’it.”)
We’ll keep an eye out for your next update. Keep your chin up…if your neck can bear the weight of that great noodle!
Hey Becky! You will be in our prayers. We are here for you and your family. This is a WOW; maybe not a big relief yet. Let us know more about your surgery and family updates. We love you guys.
Melissa, Dan, Ryan and Lindsay.
I am so excited you have a blog page now!!! I can't tell you how much I wish you didn't have to go through this. Regardless you have been so strong and an incredible example in everything you do. I have always looked up to you! Love you!
Sarah
Wow. Amazing. Thanks for sharing.
First of all...I am so excited that you are blogging now!!!! It is the best way to keep in touch.
Second...What the?!!!! Seriously, I can't believe that your health problems are all linked to such a random thing. Well I am so sorry you have to deal with this but I do know for a fact that God does know each of us and He will continie to guide you. You will be in our prayers
Becky,
Hey! Well, What about those grapefruits!!! Something else, huh!?! You do put on a good face! You're a very strong gal and I've always admired ya. And you are a great mom to the kids--don't worry about that! Continue to take care of yourself. We will keep you and the family in our prayers! I think the greatest trials come to the greatest people!
The Prophet Joseph Smith counseled George A. Smith during difficult times: “He told me I should never get discouraged, whatever difficulties might surround me. If I was sunk in the lowest pit of Nova Scotia and all the Rocky Mountains piled on top of me, I ought not to be discouraged but hang on, exercise faith, and keep up good courage and I should come out on the top of the heap at last."
Put lots of sugar on that grapefruit!!!
Love,
Nickie and Wes
Becky,
I have faith the Lord is leading you by the hand. Maybe not just for yourself-others too?
You know you may be answering some questions about my health that I have been having similar to yours. So you know-I might be joining you on some of that grapefruit! Make sure that powdered sugar is on hand! LOVE YOU VERY MUCH! You'll pull through with the Lord's help and loved ones and friends who are with you all the way!
*HUGS*
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