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Latrell
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Latrell's stuff
Well,here goes!LOL
I was diagnosed with Vitamin D resistant rickets now called X-linked Hypophosphatemia when I was two years old and my mother noticed my legs were getting more bowed instead of the other way around. You could put a large basketball between my knees with my feet touching! It is a form of dwarfism and many people that have it have a more severe form. I have low phosphorus and this causes no absorption of vitamin D and so my bones are soft. It also causes many other bone deformities which leads me to my other diagnoses. I have spinal stenosis, degenerative joint disease, osteoarthritis, enthesopathy, calcification in my ligaments, osteosclerosis, and Chiari I malformation. All of these bone conditions have the great added nervous system complications, so I have neuropathy and other Chiari related problems with ears, eyes, and head. I can still walk, by the Grace of God, and use a cane for short distances and a scooter for long.
My heart is good except for symptoms possibly coming from Chiari. I have some ovarian and uterine cysts that are not a big problem now, thank GOD. With all this I am blessed and realize that it is all relative! Thank God for his daily graces and forgiveness.
Latrell
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6/12/2008, 5:30 pm
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Joleen711
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Re: Latrell's stuff
Latrell,
It is wonderful to have you here in the group. Your story is inspiring to me. You are full of faith and love God so much and it is evident that you have such a peace within you through all that you have had to endure.
Thank you for sharing 
Gentle hugs, Joleen
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6/12/2008, 5:51 pm
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Latrell
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Re: Latrell's stuff
 God Bless you, Joleen! It is so good to meet you and I look forward to getting to know you.
Latrell
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6/12/2008, 5:59 pm
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GaleB
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Re: Latrell's stuff
My goodness Latrell. Bless your heart.
We are so happy to have you join us and I pray , we somehow can bring some solace into your life.
A diversion, support, prayer , silliness, we have it here and thank you so much for sharing your stuff.
((Latrell))
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6/12/2008, 6:01 pm
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horseshadowrider
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Re: Latrell's stuff
Wow, Latrell, you sure have a lot on your plate and I so admire your faith and joy in the face of adversity. Just one of these dx's is a handful, but mix up all that you have going on, and it has to feel insurmountable at times. I'm so glad you joined us here, with your health and nursing experience, you will be able to really offer great advice, support and of course, your faith shines through.
had you had treatment for any of these things? What do you do for the bone disease? i'll have to look up entheseopathy...
Have you had any trx for the Chiari yet?
thanks for sharing!
---
Virginia
4 plc fracture of the C1, Tethered Cord, (acquired chiari and elongated brainstem resolved by Tethered Cord surgery); atlanto occipital dislocation and cranial settling all due to equestrian accident,
2004. CC Fusion upcoming.
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6/12/2008, 7:55 pm
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ket85rn
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Welcome, Latrell. Wow!(And another nurse? what is it with us nurse-types?!) I think everyone's pretty much covered it: You are an inspiration. Glad you're here. Looking forward to getting to know you.
Karen
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6/13/2008, 1:00 pm
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Joleen711
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Re: Latrell's stuff
Latrell, I missed that you were a nurse. What a blessing that is to have you here. Pretty soon we will have our own little medical group here <wink>
I also look forward to getting to know you better. Blessings, love, Joleen
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6/13/2008, 2:24 pm
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Latrell
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Thanks to all of you. I am going through this thing, that I handle great most of the time, but sometimes it gets the better of me. My husband has no comprehension of the pain and disability these diseases cause me. He is used to a time when he first met me and I was not having all the complications associated with my bone disease. When he asks me to do things sometimes with no consideration for how I may be feeling at the time, I have an overwhelming feeling of anger and hurt, and I do not know how to answer him when I know it is something that I cannot possibly do. It is so great to know that I have someone to talk to that does UNDERSTAND.
Latrell
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6/16/2008, 12:10 pm
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horseshadowrider
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Re: Latrell's stuff
I DO understand, Latrell! I don't have the words for you to say to him, but I bet some others here do. Something that will be short and sweet, and not put him on the defensive yet get the point across.
I don' blame you for feeling hurt and angry at those times. And you know, I would venture that it's not just about anger with your husband, but anger at life in general and that you can't do those things even though you very much would love to.
I'm praying for you, and don't forget the Prayer meeting tonight, starts in 3.5 hours! On the Prayer REquest Forum!
loveya
---
Virginia
4 plc fracture of the C1, Tethered Cord, (acquired chiari and elongated brainstem resolved by Tethered Cord surgery); atlanto occipital dislocation and cranial settling all due to equestrian accident,
2004. CC Fusion upcoming.
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6/16/2008, 2:33 pm
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Joleen711
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Latrell,
There is a book out called Conquer Chiari by Rick Labuda. It is wonderful. I am trying to get one everytime I geta little bit of money and pass them around to family members. That might be a good book for your husband to read. You could approach it as I got this book for you so that we can rad and understand chiari and how it will effect our lives and things that will help us along the way. What to expect, what not to do, etc.
Sweetie, no one but the one that is going through it truly understands how we feel or what we have to endure. I hope this helps and I pray that if you decide to try it that your hubby would read and his eyes and heart will be opened and compassion will fill him.
gentle hugs, JOleen
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6/19/2008, 12:11 pm
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