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01-24-2007, 08:57 AM
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#1
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IC Friend
Join Date: Dec 2006
Location: Penticton BC
Posts: 20
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Going to the top really Works!!!
Hey All, Praying for pain free days ahead for ALL!
Well, After causing a stir with the news, Social worker at Hospital and Mental Health, I finally got in to see the Chief of Staff at the Hopsital. What a great Doc. My daughter and I were in his office for almost 2 hours while he listened and wrote everything down about our medical situations. We weren't rushed through like an assembly line. He was really appauled at the way the ER Doc told me never to darken the ER again with my presence the day I needed the Cath. out. He got me an appointment with a female specialist for this coming Monday!!!! The waiting list is all the way to April, but he told them my case was very urgent. YES there is a GOD! He told me that not urinating is very dangerous and it would affect all my other organs. My whole abdominal floor has fallen along with my bowel. That just makes the IC unbearable and I can't sit at all. He is going after all the other docs who tried to tell me I'm crazy and just after pain meds and refusing pain management and meds. YAHOO!
My daughter is only 16 and she's had a big lump growing on her temple for about 3 years now. Every other doc would say "oh it's just a little contusion with flluid in it, it's ok" She's losing her vision and blacking out in a sweat when she tries to get up. This doc says this is not ok and she has an appointment on Monday with a Neurologist and for a CT scan. Praise the LORD!
SO LADIES & GENTS!!! You need to start screaming and telling your story to anyone and everyone to get the help you need. It's very difficult with soo much pain raging through your body, but you need to do it or get someone else to advocate for you. My beautiful daughter wrote letters to our Prime Minister and Members of Parliment. She's mad as hell and isn't going to take it any more. What really got her going was when the big wind storm hit and destroyed Stanley Park in Vancouver, the local news station did a nightly telethon to raise money to rebuild the park. Well, they ended up raising over 3 million bucks in a week for the park. There were about 5000 homeless people living in the bushes before the storm and now they are out on the streets. They are tearing buildings down to build condos for the olympics but not the homeless. The homeless around these parts are mainly disabled and elderly. If they can raise funds that quickly for a park, why can't they help to house the disabled.
So start writing to your councillors, newspapers, tv news and what ever you can. Medical help is needed for all of us. We all pay taxes, We all worked before our disease, We all deserve to be treated with respect and human dignity, as it is written in the hypocratic oath every doc signs, like we were yesterday in that wonderful doc's office. We need more research dollars for this horrible disease. I love and pray for you all. I will support all of you in your endeavours to get well. It's time we spoke up. If a 16 year old sick little girl can do it so can we. It's time to get angry!
Love Curlyfries  
__________________
All my hobbies & plans for my life have come to a screeching halt in this past year and the next looks pretty bleak! But I know GOD has a plan for me or I wouldn't be here. Just like all of you! That's what keeps me waking up each day even though I don't want to face another day of screeming pain. I will Garden again. I will Knit & Crochet and do all the Creative things that are stuck in my head again. I want to go camping & fishing. GOD BLESS US ALL INDEED!  This is my cat Mikey, only Mikey is black with faint reddish brown stripes. You can only see his stripes when the light shines on him a certain way. He is blessed too! 
Diagnosed with IC 1996
Prolapsed bladder & bowel (2nd time)
Fibromyalgia 1991
Meds: ELMIRON
DILAUDID (Only if I have to cuz they make me shake)
PYRIDIUM (Freezes bladder lining)
OXAZEPAM (Night)
ATIVAN
"STILL SMILIN CUZ WHEN I GET ABOVE THE SUN, I'LL BE ALL BETTER"
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01-24-2007, 09:10 AM
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#2
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ICN Member
Join Date: Jul 2005
Location: Charlotte, NC
Posts: 4,721
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I'm very proud of you and your daughter. Sometimes it takes going to the top and sticking up for yourselves with the boss! I'm really glad that you and your daughter are going to get the medical care you deserve, and good for you and your daughter for sticking up for the homeless people in your community!
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
Colostomy surgery due to rupture of lower large intestine (sigmoid colon) ---4\18\09--Had peritonitis, almost died after surgery as I was very sick. Learning to deal with that and get healthy enough for *possible* reconnect surgery January of 2010...if not this surgery saved my life, so I can, and will live with it....happily!
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01-24-2007, 09:14 AM
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#3
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IC Friend
Join Date: Jan 2007
Location: Maine
Posts: 995
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PRAISE GOD!!!! 
Its about time...gezzzzzzzzz sometimes the doc just dont get it(pain) so they saw were addicts becuase its easier then doing the testing...hahaha you showed them!
__________________
IC diagnosed officially via cysto/urodynamics 1/26/07
Grade II Endometriosis diagnosed via lap 12/11/07
"Fall down seven times, Stand up eight."
"Life is a tragedy for those who feel and a comedy for those who think." 
Current Treatments:
Interstim Since 5/25/07!
Birth Control 
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01-24-2007, 09:21 AM
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#4
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IC Friend
Join Date: Jun 2004
Posts: 4,303
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I'm so glad you and your daughter were finally heard, kudos to you both for being strong and saying what needed to be said! I hope that things will get much much better for her now!
Blessings,
Lori
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01-24-2007, 10:57 AM
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#5
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Support Leader
Join Date: Jan 2004
Location: North Carolina
Posts: 6,668
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Wonderful  I had been wondering how your meeting with the chief went, and I am so, so happy it was so good!!! 
__________________
****
Jen
*Diagnosed with severe IC in 2004
*Kept trying a million different treatments until I found what works, and I am doing great these days with the help of Atarax, Lyrica, pain medication, an occasional rescue instill at home, and the InterStim, which was placed in 2007
You can see my IC story at http://www.ic-network.com/patientstories/jennifer.html -- it's a little out of date these days, but you'll get the idea!
I am a doctor, but I am the Ph.D. kind, not the M.D. kind. Thus, I am not a medical authority nor do I offer definitive medical advice. I can only explain the science behind many medical issues, and in all cases, I 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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01-24-2007, 12:35 PM
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#6
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ICN Member
Join Date: Apr 2006
Posts: 2,176
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AMAZING, 
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01-24-2007, 03:11 PM
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#7
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ICN Member
Join Date: Oct 2006
Posts: 941
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Oh praise the LORD!!!! I'm so happy for you both! What a miracle, what a miracle! I am so happy.
And you are right! It is shameful they can't get the people off the street and they care so much about trivial things. Shameful!
HUGS to you both and keep in touch okay?
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01-25-2007, 06:27 AM
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#8
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ICN Member
Join Date: Jan 2007
Location: New Jersey
Posts: 1,891
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Oh, I am so happy for you! You were definitely due for some good fortune! You have been through so much and you and your daughter are still standing up for what's right -- you're an inspiration.
__________________
Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
Wishing you happiness and good health, and all the best out of life.
Peace, Carolyn
___________________________________________________
Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007
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