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hey all,i haven't seen sandy on the boards in a while,and just wondering if anyone has heard from her at all?i hope everything is ok with her.
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She posted a couple of weeks ago and said that she was in one of the worst fibro flares. I'm guess that she still is because she hasn't really been around since that post.Christine
I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
I have tried every oral medication as well as rescue instills and DMSO.
I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)
Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
Also proud mom to the best Bullmastiff on earth, Claus
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oh no,i hope she is feeling better.that has got to be awful for her.hopefully someone has heard from her and they'll pop in and let us know!Comment
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Yeah I think shes having a really rough time right now..
heading her way.. oh and some ((((((((((hugs))))))))))))
Hugs
Ronda
ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!
Link to Patient Handbook:
http://www.ic-network.com/handbook/
Diet Reference Sheet:
http://www.ic-network.com/diet/icndi...tsheet0909.pdf
Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring
Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure
Meds I have Tried:
Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
Lexapro< Bad reaction to this med!
Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..
Dx With IC in Nov 2006 with Hydro/Cysto
Hydro/Cysto Caused Bladder to Rupture.
Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.
ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
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Hi guys,
I've had a really rough time of it lately and have spent most of my time in the bed. I manage to get myself up when my kids get home, get dinner made, then sit and watch TV with Tom for a while, then it's back to bed again. I'm finally starting to feel a little bit better and stronger. I hate that I keep disappearing, but I honestly have not had the energy to get on the computer at all. I had so many emails I thought they would never end when I just downloaded them all a little while ago.
My IC was also acting up, along with the fibro flare. I just didn't have the spare energy to sit in this chair.
I'm sorry I left you guys wondering, yet again, where I was.
Hugs, Sandy*IC-- Summer 2004; PFD--October 2005
*Fibro--Fall 2000; CFS-- Fall 2000
*MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis
Total Abdominal Hysterectomy--adenomyosis--9\08
04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.Comment
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