Trying to make them understand

[Rolanda Blackwell]

My family is fed up,I have had health problems my whole life.I have been considered totally disabled since June,1992.I injured my lower back on the job which left me bedridden for six months and then after getting up and moving my leg gave out from under me resulting in many falls. One fall landed me in a wheelchair for a 1 1/2 years, to a walker for two years, to a cane for 3 years. I have been off the cain now for about three years. I had female cancer when I was 21,resulting in a hysterectomy. During the healing process I started having flashbacks from being molested, thru that treatment It was discovered as a result of being molested I am manic depressive and now a recovering anorexic. Five years ago I landed in hospital at 78lbs. I am now 110. I just got back on my feet and returned to work in May 2000 and was able to work until May 2001. I am now back on disability due to anorexia and back injury.,And low and behold last week I was diagnosed with IC, I had already been diagnosed with pylonefritis fourteen years ago. Needless to say I am a mess. With the IC diagnosis my family has had enough, they act like this is no big deal and do not realize how painful or dibilitating this is.Please all advise excepted.

[Tammy]

Rhonda,
I fully understand!! My husband is about the only one who supports me. (even he forgets sometimes) My 28 yr. old type A personality daughter says we all (meaning all on this board) just need to "GET A LIFE"!! and stop feeding off each others anxieties!! I can't believe she actually said that, but you would have to know her!! She thinks it's all in our heads too! And I even took her to the Uro with me last week, when I scheduled my Hydro. She can be such a TWIT!!After my visit complete with pelvic exam (OUCH) she wanted to go shopping!! But in her defense, she is very hyper-active & can't sit still for a minute! So she thinks the rest of the world is lazy, cause we can't keep pace with her. I tell her she needs medication for her obsessive-compulsive disorder!! I have learned to basically ignore her comments.
I just wish we had the ability to give IC to those who are ignorant & unsympathetic, just for one day or even one hour of a bad flare!! Then they could understand what we go through everyday!
Just remember there is always someone here to listen, sympathize and support you when you feel down!!
Take Care!
God Bless!
Tammy

[Rolanda Blackwell]

Tammy thank You for such kind words, I truly wish that we could loan this disease out for a while to the ignorant. My husband is great about understanding what I am going thru, however, him or my children don't do a whole lot to help out. My main wish is to make my husband understand that I still Love him just that (romance) is painful and just not wanted too much right now. He seems to feel like there is someone else, he has not said it but I can feel it. My bladder is so inflamed that it has bulged into my vagina and is very uncomfortable I have been swollen to the point of looking five months pregnant for going on three weeks now. I don't want (romance) with him or anyone else. Well I apologize, my thanking you for your kind words turned into a vent, I apologize. Email if you like [email protected] God Bless You all for being there when we need each other

[Tammy]

Rolanda,
No need to apologize!! My kind words also sound like venting!LOL I apologize for getting your name wrong!! We all seem to comfort each other & vent at the same time! However it is comforting to know that we all understand, been there & done that.
As for sex, that is one of the worst triggers for me. My husband knows there is no other!! I had my hydro done today & start on Elmiron tomorrow! I'm keeping my fingers crossed for a remission!
Take Care!
Tammy

[Lady J]

I understand and can relate in some ways too. Sometimes I find that laughing at myself and all the crap I deal with helps others to relax around me and end up being more supportive.

[Kaye Kaye]

Hi Rolando--I found it... YEAH!!!! Well i hope you made some calls today-and things will turn out fine.. I still think you should really consider going through that procedure under in the hosptial.. I cant imagine you doing it awake--no one could pay me enough.> Your pain sounds as bad as mine-and having that done in the office-will only worsen it... He or She-(urologist) should also be doing a hydrodistension and biopspy at that time. I know with my first cysto i had it done by a gynecologist-so he couldnt do the biopsy or hydro.. But when he found nothing-he was mainly looked at female--i also had a laproscopy and hystersocopy at same time.> I then was referred to my urologist-and he did an IVP to look for stones and then did the second cysto with hydro and biopsy-i know from what ive read-they really cant see in the bladder very well without filling it-ie hydro.. SO im not sure how helpful it will be to begin with?? Since you have already been diagnosed-what is the point of the cysto to begin with??? Im confused-sorry if i read it-my brains fuddled from all the meds.. Another lovely side effect of IC for me. Im so sorry about all you have gone through-it just never ends does it.. I wish you the best-and hope we get to talk again. I hope your family starts realizeing what IC really means... Its so bad having IC-but when the family doesnt help its a hundred times worse.. Keep your chin up and email me if youd like--at [email protected] Big Hugs and Smiles-Sending Healing Prayers and Wishes for A Cure For Us All... Karla-Kaye Kaye