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louella
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louellacan posted:
hi all...this is the first time for me at this site. i am so happy about it being here and thanks to bren-bren for starting it. (hope i got the name right!) i have read a lot of interesting and heartbreaking stories. i really could relate to the posts reguarding the patch! what a nightmare they were for me...couldn't stand them and had some big-time problems while using them. the worst was the sores they left and the problems with over-heating. they made me feel really bad all the time and got little if any relief from them. tried several but none worked. i had been put on them because i was having issues keeping anything down while going through cemo due to hep-c. we found out about it because my pain mngmt. dr thought ra was kicking in. it wasn't but because the symptoms are a lot alike, he runs a complete hep work-up as a normal procedure when the ra tests are negitive. as it turned out, i had had it for so long, my viral load was close to the level for liver failure. the treatment was new due to 9-11, and had an enormous amt. of side effects. i had to stop after only 4 months because it was killing me. the problems i had that lead me to a pain dr. were small in comparison to some i have read about, but significant enough. deg. disk, scoliosis, nerve damage due to breaking my tail bone, a cyst in the spinal canal that had grown and was sitting on nerves, oa, and a few other things just for good measure i guess! then came the treatment and things went south from there. it left me with a much more pronounced amount of nerve damage due to the cemo and caused an adrinal gland growth that kept me in the hospital more than out. i would get so sick that i would start vomiting and not be able to stop for days and terrible kidney infections. i would stay in the hospital 6-10 days at a time on several antibiotics and pain meds untill it would just go away. they couldn't figure out what was the problem and because by that time i was on oxycontin and actique as well as nurontin and some other things from time to time, they just decided it was due to the drugs! we didn't find out it was the growth untill we moved back to la. and a urologist found it. when they removed it, it looked like the surface of the moon! it had been abcessing, causing the infections and sickness...for 2 yrs. it had been doing this. when they put me on the antibiotics, it went away and would slowly start again. it was such a tramatic time for me because i knew something was wrong...they were just not looking, and it was easier for them to call me a drug addict. that alone caused more problems than i care to count...family, friends, drs, husband, you name it. there is nothing like having a screaming match with your mother in the e.r. while waiting on a room, listening to the medical staff talking about you, while you are puking up your toenails in a garbage can let me tell you! at least life wasn't dull! i thank god for the dr here that fixed the problem and gave me back some part of my life and a certain amount of vendication. because of the damage from so much vomiting done to my system and the acid reflux that was an added bonus, they put me on the pain patch. i asked my dr to put me back on the oxicontin. i am doing much better and have gained back a good deal of the weight i lost...from 140 to 103 being my low point. i am now after 5 yrs back up to 130! it was a hard ride, but i learned a lot about myself. good and bad, but life is good now. there are good days and bad, but i am greatful to just be here. i take each day as it comes and live it to its fullist. my family has changed and my husband is a wonderful, understanding man. there are bumps in the road ahead, i know and am prepared for them as best i can be. the one thing i don't do is live in a state of fear anymore. i can take whatever comes, god is with me and prayer is a wonderful thing. you also have to laugh sometimes! thanks and my prayers are with you all.
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davedsel57 responded:
Hello, Louella, and welcome. You can click on my user name or avatar picture to read my story.

Glad to have you here.
 
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bren_bren responded:
Hey there louellacan, it sounds like you have been to hell and back. I applaud you for your persistence and tenacious attitude that undoubtedly lead to such a recovery!!! I'm sorry to see that the pain patch (fentanyl is what you were referring to I assume?) didn't offer you comfortable relief. I have had much difficulty getting it to stick, stay on, and actually deliver the amount of medication it is supposed to due to sweating; but I have found that it is the most effective pain reliever for me -- everyone is different.

Welcome to our exchange! I hope you feel encouraged to post more about your recovery and your overall process as a pain patient because we are here to support you. I started this exchange months ago, became a bit inactive and had issues with my former account, but I can assure you that I am the one who started this support group. My son, Jake, is in my profile pic so you won't miss me.

Just to let you know, I wanted to start this group for any sufferers of chronic pain, or even family members who can't quite grasp the issues surrounding their loved one's road to seek out the appropriate management of pain. It's difficult for either party to understand or receive the support that such a predicament demands. I hope to see others come and write soon, since WebMD has created many exchanges that seem to be based solely on a question/answer format for the physicians/professionals who have volunteered to do such work. I wanted to keep this board for people to vent (SCREAM OUT LOUD), offer/give advice and support, and just simply state their story and inspire others to jump in and get the much needed support.

I hope this message finds you well and please encourage any other "friends" you have made here to post their story. We are here for each other and our only motivation is to get better!!! If we don't get better, then we could at least "feel" better for a moment and that would make a difference. Smiles, B


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