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Given that nothing happens with my kids (God forbid), the car continues to run, and I don't start flaring out of nowhere, I finally have my much anticipated rheumatologist appt tomorrow. It was moved to the 28th when my daughter had her seizure because I missed my appt taking her to the ER, then I lost my original appt because they'd given it to someone else. I'm very impressed with the office staff because they really have gone out of their way to get me in early....even though I wasn't near the top of the cancellation list. So, wish me luck. I might really get to go to this one!!! Here comes new doctor anxiety again!
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*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. -
Keeping fingers, toes, legs and whatever crossed that you make it this time.Sharon
Shopping??? Did someone mention shopping? I'll get my hat... ;-)
Where I can be found most days.
Link to the ICN Patient Handbook:
http://www.ic-network.com/handbook/
Link to the IC Diet:
http://www.ic-network.com/diet/
IC 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. -
Here's hoping for the best!!!! And lots of hugs!!Hugs,
Tracey
How do you eat an elephant? One bite at a time...
Harry arrived 2/23/09!
*IC 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.
IC Diet Cheat Sheet:
http://www.ic-network.com/diet/2009icdietlist.pdf
Dx's:
IC dx'd Nov 2004
Lymphocytic Colitis dx'd July 2005
Possible IBS
Current IC Meds
Vistaril 25mg in the evening
Previous IC Meds taken:
Cystoprotek - 2 caps 2x's a day
Elmiron, 100mg 3x's a day
Ditropan, 5 mg 3x's a day
Others:
Wellbutrin 150mg 2x's a day for Anxiety/IBS
Pepcid 40mg a day for GERD
Zytrec for Nasal Allergies
Align Probiotic daily for IBSComment
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Have a good appt.!
I hope your appt. goes well and he gets you on the track to feeling better. I didn't know your daughter has seizures. What type...if I may ask? I have epilepsy and was told by my rheum. that Fibro, I.C., IBS, Endo, Epilepsy, etc., are all related conditions...but I can't remember why. He even told me that the conditions I have caused the death of my first child (stillborn @ 6 months in utero). It's still a mystery as to the cause of his death. I would like to know, but feel comforted knowing he is in heaven with the Lord. I had no problems with my 2nd and 3rd pregnancies, in fact, everything was as close to perfect as could be. Such a mystery...I guess I'll "understand it better by and by".
Anyway, re: your daughter's seizure condition...., I just keep thinking about those bullies who harrassed your daughter at school! Such extreme stress can bring on a seizure for sure. I hope all that mess was cleared up and they have stopped acting like such buttheads. I'll be praying for you tomorrow!
DanitaDani
-Bladder surgery to correct reflux-'68
-Terribly painful periods, beg.@ 13 (most likely due to endometriosis, no dx then)
-4 gyn surgeries since 2003 to remove cysts, ovaries, endometriosis and uterus
-DX'd w/I.C. before 3rd gyn surgery, but sure I've had it since childhood
-Gastrointestinal allergies to nuts and shellfish - {I would like to know if there is some connection of gastro allergies to I.C.?}
PTSD (sexual abuse by teenage boy when I was 4 and s. abuse by adult male who was friend of my Dad's - my parents still don't know)
-DX'd with IBS in 2000
-Rhabdomyolysis in 2001 (has not returned)
-DX'd with Eosinophilic Esophagitis (Asthma of the Esophagus) 3/07
-DX'd with TMJ in 2000-wear splint
-Hydrodistention and Cystoscopy w/ biopsy of tissue in bladder-2003
-DX'd with Epilepsy -2000
-SSS (Selective Sound Sensitivity)-wear earplugs most of the time to screen out certain noises
-DX'd with Fibromyalgia (2006)
Medications:MS Contin-30mg@3xday,Hydrocodone-10/650:up to 4day,Levothyroxine,Soma,Clonazepam,Vesicare,Keppra (anti-seizure),Flovent FHA 220mcg (swallowed for E.E.),Elmiron,Instillations-5+per week for flares,Lidocaine,Cysta-Q,Prelief, Dulcolax,Baby Aspirin(for FM),God blessed me w/2 boys: Devin-14 and Logan-9, Jim, my husband of 18+ years who sort of understands what I.C. is...still working on educating him!, my springer spaniel "Wookie" ('cause he makes sounds like 'Chewbacca' from "Star Wars" when my son plays with him) and the most important 'medicine' of all...PRAYER...because ONLY God knows the answer to why we are all going through this awful I.C.!Comment
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awsome Sandy, hope all goes well for you. keep us posted'The will of God will never take you where the Grace of God will not protect you.'
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DonnaStay safe
Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf
Have you checked the ICN Shop?
Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.
Patient Help: http://www.ic-network.com/patientlinks.html
Sub-types https://www.ic-network.com/five-pote...markably-well/
Diet list: https://www.ic-network.com/interstitial-cystitis-diet/
AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/
I am not a medical authority nor do I offer medical advice. 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. [3MG]
Anyone who says something is foolproof hasn't met a determined foolComment
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That's great that you finally have your appt tomorrow Sandy. I hope everything goes well and nothing stops you from going. Be sure to tell us how it went when you get back.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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Hope all goes well!mom_in_maComment
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Good luck, Sandy! I hope you find this doctor compassionate and helpful
****
Jen
*Diagnosed with severe IC in 2004
*Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
*Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
*Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).
**I am not a medical authority nor do I offer definitive medical advice. 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.Comment
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So glad you are getting in to see the doctor. I hope all goes well and I hope the doctor treats you with kindness
Miss Bessie
Galatians 6:2 - Carry each other's burdens, and in this way you will fulfill the law of Christ.
Hebrews 13:2 - Do not forget to entertain strangers, for by doing so some people have entertained angels without knowing it.
Proverbs 4:23 - Above all else, guard your heart, for it is the wellspring of lifeComment
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I'm a nervous wreck! I've gotten myself really prepared with a health history that includes all my recent symptoms, all my dx's, all my meds, everything that I could think of that might help him figure out whats wrong with me. I've finished my 2nd round of prednisone and I can sure tell that it's out of my system. My puffy face is going back to normal and that is the only positive about stopping the prednisone. I feel awful, so this appt is coming at a good time, but the rashes/itchies haven't come back yet, but they are sure to come back, they always do.
Danibelle, my daughter has a neuro appt on the 26th, so we'll see what they say. I'm really hoping this was an isolated incident. She's feeling much better, and the dizzy spells are fewer and farther between with every passing day. She was having a lot of stress with those rotten kids, but that was weeks before her seizure, and to talk to her she was fine mentally at the point that the seizure happened. It's really a big mystery. The last thing I ever wanted in this world was for my kids to have medical problems. It's ok if it's me, but not my kids. I worry for all 3 of them every day....after her seizure I realized just how vulnerable they really are. It's scary!!!! When I know something after her appt. I'll post it. Thanks for asking!
Wish me luck...gotta go put on some makeup so I don't scare the poor doctor half to death!*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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Good luck to you Sandy! Im praying for you doctor that he will be able to help you and valadate your symptoms!
Erika
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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Good luck! May everyone be well and the car run for your big day tomorrow.Comment
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