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I just returned from meeting Amy (ihurtoo) at her pain clinic appt. and then we went to lunch. She is such a sweetie and know most of you all out there have gotton alot of support from her and just wanted everyone to know she is a beautiful person inside and out. P.S. I got the waiter to take a picture, if anyone knows how I can attach it to this post let me know. I can download to my computer.
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If you put it on a photobucket account then you can click on the image code and copy it and paste it into your post. Or you can check the box below the picture and then go down to bottom of the page and click on generate HTML and IMG codes, then you can copy and paste the third one down which will say clickable thumb nails for message boards. This one will make a small picture in the post that we can click on and it will take us to your photobucket account to see the larger pic. Hope this helps. That's really cool that you got to meet Amy, she is so nice and kind, you're very lucky to have met her.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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**snapping fingers** You beat me to the punch! I was going to post that I got to meet YOU, but you beat me to it! I was so glad to finally meet you. It was so nice to talk to another ICer face to face. (Marilyn is the first ICer I have met.) We had such a great time! She is so pretty! Thank you Marilyn for coming with me to my appt and for taking me to lunch. (She's little, but she's fast, and wouldnt let me pay!) Thank you again for meeting me and for lunch! It was so nice to finally see your face! I cant wait to meet again, only next time, I am buying!
Hugs,
AmyComment
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That is really cool.. I bet it was nice to get to visit with someone who knows exactly what you are going through
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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AND you both beat me to the punch -- I was just going to ask how the meeting went!
Sounds like everybody is happy about it.
I'm going to get myself out to Kentucky one of these days, girlfriend!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
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Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007
On the Beach with IC Comment
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Awesome!Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011
"One hour at a time, this was NOT my American Dream but it has to work out somehow."
I also have some journals of my journeys, past and some present at:
http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/
Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.Comment
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glad that you got to meet in person.
It is nice to meet someone with IC in person - In fact, I met someone on line here who lived in Florida who was moving to Austin, Tx and I told her to contact me when she moved here--gave her my cell number- never thought she would call me but she did, we talked on the phone for quite some time and finally met each other in person.
Its always nice to talk to someone about your illness but its even better when you get to meet someone who actually have the same things that you have. Again, glad you ladies finally got to meet and had a nice lunch. Hopefully you could do it again really soon.Comment
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It is grerat to meet someone that has IC face to face. I grew up with my mom having IC so I knew quit a bit. I had the pleasure of meeting windwalker, I posted pictures in here some place, she is a real sweety, and her daughter too. I have met her, her daughter and hubby. Dawn comes and visits me when we aren't so busy.'The will of God will never take you where the Grace of God will not protect you.'
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I agree it is great to meet others, especially from the boards. I have met Radstudent and recently BabsRN, and I have to say she a 100 times the person she is on the boards. Glad you had a good visit.Comment
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We'll be meeting you too Dancemom.. we just to get our wacky schedules in sync.'The will of God will never take you where the Grace of God will not protect you.'Comment
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Ok I am trying to upload our picture. Let's see if this works.Comment
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