Joleen711
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 Joleens tote bag of goodies
I may leave something out, if so I will add it in. Sorry..my head is not working real well today.
**Scoliosis
**Severe osteoporosis
**protein s defiecency-3 strokes while pregnant with daughter.
**factor V leiden-blood thinners while traveling
**Chiari I Malformation-decpmression 09/07/07
**Endometriosis-total hysterectomy at the age of 28.
**FUll Blown menopause-known also as global warming, lol
**Hole in lung-asperated
**Sleep apnea-severe
** TMJ
**TBI
**Whiplash
**PDS
**PCS
**PArt of my breat removed in 2003
**Kidney and bladder problems in past
**possible TC...tests pending
And the list goes on.
Great idea! Maybe we should do a testimony page (or book for some of us, lol).
Gentle hu gs, Joleen
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6/9/2008, 10:59 am
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horseshadowrider
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Location: Washington state
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Re: Joleens tote bag of goodies
Joleen, we DO have a testimony page and I just bumped it up on the Park Bench! Hope you will add yours!
Some notes on your stuff:
My half sister has the protein S deficiency, that's the first I'd heard of it and you are only the 2nd one I'd heard of. Did you have your siblings tested? The docs told my sis to tell us that, and I did (came back neg).
I had horrid TMJ for many years and it is completely and miraculously gone post TC surgery!
What are you having done for your severe osteoporosis? I'd like to talk to you further about this.
What are PDS and PCS?
Does the hole in the lung heal it self or what is the trx?
thanks for sharing this!
hugs2ya
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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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6/9/2008, 11:48 am
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Joleen711
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Re: Joleens tote bag of goodies
oh wow...I missed the testimony page...sorry 
That is amazing! I Have never heard anyone else having the protein S either. I have no siblings that I can contact. I was adopted and have no information. I did have the kids tested because they did tell me that because it was triggered with the pregnacy that there was a chance our daughter had it too. She does. We just have to watch her closely.
I think I got the abbreviations wrong. its supposed to be Post traumatic stress disorder and post concussion syndrome.
The hole in my lung did heal after time but I have to have it checked every so often.
My osteoporosis is being treated with an herbal supplement which I have not been taking regulary due to not remembering). The doctors had me on several different drugs and they were not working. After asking them to monitor me with the supplement they took me off the drugs and told me to stay on the supplement because they are seeing draumatic changes and it had to be the supplement. They said that no prescription drug could act that fast (over 6 months). So that is what I am taking now.
Wonderful to share. Hugs, Jo
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6/9/2008, 12:03 pm
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horseshadowrider
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Re: Joleens tote bag of goodies
Hi Joleen...hope this finds you well.
I should have known the PCS, I just spaced that one out for awhile. I have that too. I "had" PTSD and I know very well what that is and feels like. I really had a typical case of it after my injury but I think I'm healed from that now. I don't jump at every little thing anymore. I used to watch TV and if someone slipped and fell or did somethin sudden, I'd jump out of my skin. Other symptoms of PTSD, I also had in spades...but no more, thank God.
Osteoporosis: I "had" this but it has been downgraded to osteopenia. How did that happen? Well, I've been taking Actonel for five years at least. Then, when Dr. B showed concern for my osteo as it relates to the fusion therapy, he wanted me to do something super dooper with my bones pre fusion.
I took six months of monthly IV trx called "pamidronate"...there are some other trx that might be better, like Forteo or Zometa, but I have pre condition to bone cancer so couldn't take them. These are very expensive trx, I think $6000 a trx (insurance paid)...but after the trx, there was improvment in bone mass! In fact, I'm up to normal in one area. And I'm 56 yrs old and been carrying around this osteo for a long time!
I'm now on a plan to have the pamidronate once every 3 months, and in 3 more months, they will do another DEXA and see if things are still improving. When improvement stops and it all plateaus, then Dr. B will do the fusion on me, if I'm ready for it.
So, I wanted to let you know of this trx. Basically, the bisphosphonates cause the bones/body to use the calcium you take more efficiently. IF insurance covers it, I believe it's a very effective trx. My fusion now will be put off for a year or so while we are getting the bones in shape.
just FYI
hugs
V.
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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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6/11/2008, 9:49 am
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Joleen711
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Re: Joleens tote bag of goodies
I am so glad that your osteo is getting better. I also took the actonel for a bout almost 2 years and then there still were no improvements so they put me on another one (cant remember the name..sorry) and still after taking it for a long time there was no improvement so that is when I started the OsteoProCare. I am almost back to osteopenia..praise God! They are thinking that i was not absorbing what I needed too from the meds.
I am so amazed at your positivity and you are such an inspiratioon to me, please know that. Love, Joleen
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6/11/2008, 11:20 am
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