I don't mean to complain, but I wanted to apologize for my temporary absence from this site. I did in fact loose someone very special to me, with mostly thanks to my I.C. My boyfriend was so patient and understanding. I made it a point to thank him often for his patience and understanding with me. But his patience wore so thin that after a year and a half that he dumped me in a note he wrote before he went to work. He wrote that there was always something wrong with me, and that my negativity was bringing him down. The worst part is, all my life I really have been considered an optimist. Apparently, if I was an optimist before, I have not remained one anymore. My heart is so terribly broken, I feel so hurt, lost, hopeless, and helpless. I feel no one will ever be able to love and understand me as much as I would love and understand them. I am so angry and resentful of many things right now and could never feel more betrayed. So who knows when I will be able to offer the support I would like to give to others. Right now, I can’t stop crying long enough to care about anything other than this dark, dark frustrating and lonely world where the closest relationship I will ever have for life, is a man named toilet, who can always be found within the nearest bathroom stall.
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me, the potty, and I
Love is a fruit in season at all times, within reach of every hand. ~ The Blessed Mother Teresa
Status: Diagnosed October 2006 via cystoscopy with hydrodistention. Max anesthetized bladder capacity only 250 cc's. Mast cells and pinpoint bleeding found.
Remission for me means less pain for more days than not. Frequency is inevitable with a bladder this tiny! That is ok though. The difference between when I was diagnosed and now, is that I have embraced that fact. Me and the loo, we are one.Tags: None
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Aww Hun I am so sorry...((((((((((hugs))))))))))
You know it just makes me so mad that so many people do not understand this disease.. But honestly you dont need him, if he can not support you now when you needed him the most you are better off without him.. I know that dont make you feel any better only time will do that..I wish I could say something to take the hurt away..If you need someone to talk to PM me anytime
RondaHugs
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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I'm so sorry Kristi. I know how hard it can be on our partners that we are sick all of the time but to write you a note? How horrible. Ronda of course is right, if he can't support you then he's not worth it. I know that you don't feel this way now but obviously he isn't worthy of you. There is someone out there who will love you just the way you are.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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Honey, I know this is not what you want to hear, but you are better off without him!!! If he could not stick by your side now, then Could you imagine how it would be when you got older?
Just ask yourself, if it were the other way around, and he was the one who was sick, would you have walked out on him? No, you would not have and that is because you love him. Obviously he did not love you enough to stick by your side through tha bad times, and like I said, you are too good for him, and you will find someone who is worthy of you and who will love you for all of you and even in the bad times. That is what love is all about. It is about being there through the bad times, not just the good. I am sorry you are going through this. Sending you big hugs.
Jen
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Sweetheart, I am so sorry. I wish you had let me know earlier. I would have done anything to cheer you up. Honestly he doesnt deserve you... you are such a beautiful women and you have a beautiful soul. Your post put me litterally in tears b/c it hurts that this boy was such a coward. He couldnt end it in person, but a letter?? It just shows how immature he really is. That is pathetic and dispicable to me. I really feel for you and I wish that I had some words of wisdom for you but i'm not good at that.
I also fear of my bf leaving me b/c of IC. I wish I could beat him up for treating you the way you did. He doesnt deserve you. What goes around comes around... he will get his some day I assure you. But I do believ in soul mates and I'm sure there is a man waiting for you. Dont worry you will find him and he will treat you like the princess you really are. If you need to talk please call me. I'm going to pm you with my number.
Hugs
Rachel***Rachel***
Dance like no one is watching
Love like you've never been hurt
Live today like it's your last
Dxd with IC in June '06
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oh kristi...my eyes are welling up b/c i ache for you. everyone is right, you are better off w/o him...but it is hard.
i don't have any words of wisdom, just wanted to offer comfort and.
please email me or msg me if you just need to vent (see sig for email).
big hugs,
tracy(Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).
Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).
I'd like to be on House, MD as a medical mystery.
Married to Craig, a saint amongst men...who puts up with me and my eccentricities...
Connor & Mommy by the tree:
Connor with Santa...so happy!
I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!
Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...
I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!
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I am so sorry. Rachel used the word "boy" in describing him. That is what he is...a boy runs away when the going gets tough. A man sticks with you through thick and thin. (((hugs)))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.
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Thank You All....
Thank You From The Bottom Of My Heart. You Are All The Best.
You Are All So Sweeet, And Empathetic And Caring, I Would Not Know What To Do Without You. I Have Faith In Tomorrow Now, Thanks To Your Loving And Caring Sweet Minded Hearts. All My Love And Warmest Of Regards.Love is a fruit in season at all times, within reach of every hand. ~ The Blessed Mother Teresa
Status: Diagnosed October 2006 via cystoscopy with hydrodistention. Max anesthetized bladder capacity only 250 cc's. Mast cells and pinpoint bleeding found.
Remission for me means less pain for more days than not. Frequency is inevitable with a bladder this tiny! That is ok though. The difference between when I was diagnosed and now, is that I have embraced that fact. Me and the loo, we are one.
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I'm so sorry, Kristi, I am so, so sorry that this happened to you. It was not your fault. As everyone pointed out, writing a letter is a cowardly way to end a relationship. But a boy who runs out when things get a little rough, is not a man who will stand by you in the long run. I guess we all sometimes feel like our most meaningful relationship is with the potty (or, my heating pad and I have become very attached), but a lot of us have found love with men who will stick around and find ways to make it work. And you will, too. I'm sorry this guy wasn't who you thought he was. Just, please don't blame yourself! You are still a lovable person. Maybe you need this time on your own to learn to adjust to IC and figure out how to make a life within its constraints. Maybe this relationship just wasn't meant to be at this time. It doesn't mean you won't find love again, honey.
Be good to yourself.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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Thank You all once again
Thank you soo much too Ronda, Christine, sbaker, Mary, Jen, Rachel, Tracy, Sharon and Carolyn. I am already feeling much better. IT has been a couple weeks since this actually happened, I just didn't really talk about it until the other day. So, hopefully things will keep getting better each day. I think I am past the worst. I mean, him and I quit cigarettes together on the first day of January. The moment he dumped me, the first thing I thought was to go and get a pack of cigarettes to pacify the self pity. (Turns out he sure did) However, I resisted and dealt with the overwhelming emotions triple time and so now..Let's just hope I got most of it out of my system. haha. Warmest regards to you all!!
Love is a fruit in season at all times, within reach of every hand. ~ The Blessed Mother Teresa
Status: Diagnosed October 2006 via cystoscopy with hydrodistention. Max anesthetized bladder capacity only 250 cc's. Mast cells and pinpoint bleeding found.
Remission for me means less pain for more days than not. Frequency is inevitable with a bladder this tiny! That is ok though. The difference between when I was diagnosed and now, is that I have embraced that fact. Me and the loo, we are one.
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I'm so glad you resisted the temptation to go back to smoking. I did the same thing, a different situation however. Plus smoking hurts ic more. So it's a good thing that you stoped yourself. I'm glad your doing much better. Somedays are better than others and it's okay to be sad and cry if you need to. We are all here for you. We are your family and dont you ever doubt that. I'm hear to listen and give you the best advice I can offer. You need to do what makes you happy and remember your better than him... you need a man not a boy!!! there is a sexy man waiting out there for you!!! haha Go get him hunnie! hahaha Sorry I had to lighten it up here.
pm me if ya need to talk.
Hugs
Rach***Rachel***
Dance like no one is watching
Love like you've never been hurt
Live today like it's your last
Dxd with IC in June '06
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Woohoo Kirsti! I just quit smoking last August so I know how hard it is to quit. I am so proud of you that you didn't go back! When I was going through the whole do I have IC or don't I with the dr's I wanted a cig soooo bad because I was so stressed but I got through it, and I'm so glad you did too! If you ever get the urge PM me, I'll give you my # if you'd like, sometimes I just think you need to say, I really really want one and then get past it.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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What a cop out. That just goes to show he was only surface deep. I have real problems with someone that seems to be there but when you get down to the nitty gritty they really aren't. It is such a betrayal. But to then write a “Dear John” letter…what was he thinking?sbz]]\
I married my best friend. I just didn’t realize it until after we were married for a few years. I have always said I married for love the first time. But it wasn’t, it was companionship that developed into love and appreciation. Next time around it will be for money…not …there won’t be a next time.TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985
Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
I post to encourage and offer total support for rescue instillations.
Find me on facebook: L. Clark Thomas
Louann
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