RSD Outreach awareness

Nat's Story

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Nat's Story

Post  byrd45 on Sat Nov 01, 2008 8:33 am

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From: nat (Original Message) Sent: 1/11/2007 8:49 AM
I am a 25 yr old Australian and i was first diagnosed with rsd in my left foot after a golden staff infection in my left foot from a tiny little prickle in May of 98. I was rather suprised after months of the doctors trying to get rid of the infection that my foot was still ugly and purlpe almost black at times even though the infection was gone and know one could tell me why it was so sore i couldnt walk on it or even weight bear on it untill i was sent to a different hospital and the doctor took one look at my foot and told me that i had rsd. then began the rounds of hospital treatments the medication sometimes i felt i had gone shopping when i left the hospital since i would walk out with shopping bags of new medication they wanted me to try.well the finaly decided to do a spinal sympathectomy which actual worked and i can now walk on my left foot and it seems rather normal since it doesnt hurt any more. But little did i know that if i ever hurt myself again then i could get RSD there as well which i found out a couple of years later when i broke my Left wrist in 2002 when my son was 15month old so there i was in plaster a couple of weeks later wondering why my wrist is hurting more than it did when i broke my wrist in the first place again the round of doctors begain until i was sent to the same hospital that diagnosed me in the first place u can imagin there suprise when i burst out crying (it seems they hadnt read my records) when they told me i had rsd of the left wrist the stupid doctor asked me why i was crying when i didnt even know what rsd was and that was when i told him that i had had it before and therefore knew what i was infore and that if they had read my charts they would have known that. it seems my hospial had forgoten to mention that if i ever hurt myself then i would have to be treated with nerve blocks where ever the injury might be otherwise i could get rsd where i was injured. After more years of treatment (one wich i ended up on life support cause the doctor did the procedure wrong during a nerve block) and of raising my son by myself the doctors told me they wanted to try another sympathectomy this time in my neck since the last one was so sucsessful i thought for a long time then decided yes they could do it since i wanted to be an able bodied mum again so i went and had the procedure done little did i know that my doctor was away and the instructions that he had left for my treatment had gotten lost as i had been told before i had gone into that i would have to be admitted for a week or 2 with an epidural in my neck and a whole other asortment of treatments to prevent rsd again since they where clapsing my lung and also pushing through my brest tissue. i guess if anyone can imagin my horrer its this group when i was discharged the next day with no follow up treatment even after myself and my family argued with the doctor about the lack of treatment i was being given one (one of my family members had been present at the pre admisson app and had heard what was ment to happen) a month later i am back at my specialist being told that i have rsd in my left breast. i went to my after op app and told them the out come of my op and all they said is sorry the instructions got lost accidents happen. now i have rsd in both my left hand (the op didnt even work to fix that) and my left breast and have had it in both places for 21/2 years now. And i found out i was pregnant 4 month ago so its rather fun at the moment because my doctors havent treated or heard of a pregnat rsd patient before and if i though my pain was bad before thats nothing compared to now with all the changes my body is going through. thank u for letting me vent all this and im sorry for rambling on if anyone has any thing they could tell me about rsd and pregnancy it would really help many thanks all of u Nat



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From: byrd45 Sent: 3/20/2007 12:09 PM
Hi Nat,
Welcome and thanks for sharing your story with us. You certainly have been through your share of horrible happenings connected to this disease they call RSD.You must have been so angry at those doctors for their incompetence and then they shrug it off like that! I would have been furious and now you are the one suffering for it. Well you sure do have an interesting year coming up with the baby coming and all! How exciting for you!If there is pain with the delivery and pregnancy that will definitely be well worth it! How are you feeling so far? I've heard some people actually can go in remission during pregnancy or see a reduction in pain levels. It should be interesting to see if that happens in your case. I hope it does that would be wonderful! Well best of luck with the baby and keep in touch and let us know how you are doing as you get closer and closer to your due date.You said in your other post you were having trouble picking a name. Did you decide on one yet?
Love,
Robyn


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From: nat Sent: 3/15/2008 7:50 AM
Dear Robyn
Im sorry I have not written in a long time i have been rather busy and rather sick unfortunatly my pain levels did not go down while i was pregnant they got worse but i managed to do most of my pregnancy drug free except for the last month or so i did end up in a wheelchair at 5 months. 2 months after i had my daughter lara i got dvt in my right leg and have now been diagnosed with uncontrollable muscle spasms of the throat so i am having more reasherch don in that area if u could read what i have written on the general message board it will fill u in in greater detail as i really need help
Many thanks
Nat



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From: byrd45 Sent: 5/29/2008 8:14 PM
Hi Nat,
Sorry I didn't see this sooner and please don't worry about not being on it is understandable with all you are going through. You come and go whenever you can okay. That is how I do things around here because we are all too sick to be on any kind of a time line even myself at times. How are things going with the spasms in your neck? Have they figured anything out to help you yet? I hope they have and have been keeping you and little Lara in my prayers. Check in when you are able and let us know how things are but we all understand why you have been away.
Love,
Robyn
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