Here in Birmingham, Alabama

[Christy from AL]

My name is Christy Slatsky. I live in Pleasant Grove, Alabama. I have 3 small children; 7 years, 5 years, and 3 years and I am homeschooling them all. I have just been diagnosed with IC in Feb. of this year. I am still in constant pain. I have various degrees of pain put still constant. I was interested in chatting with others from Alabama suffering with IC. Thanks for listening. You all are in my prayers.

In Peace,
Christy [img]smile.gif[/img]

[Autumn B. May]

Hi Christy...my name is Autumn May....I live in Roanoke, Alabama which is about 250 miles south of you. I too have 2 small children...Seth-9 and Emma-7. They are very active in everything from dance to soccer. I work full time as a Municipal Probation Officer as well as I am office manager for Randolph and Tallapoosa Court Referral Program. I have to cover courts a lot and you can only imagine what that is like living with IC. I was diagnosed by a doctor there in Birmingham at the Kirklin Clinic...(Dr. Keith Lloyd) I struggle from day to day and some of it is my fault because I will push it when it comes to my diet and I pay for it sometimes. I just recently had my 4th or 5th hydro done. IT DID NOT WORK THIS TIME! I am in constant pain but I think some of that is coming from we are remodeling, the kids being very busy and my job has been very hectic lately. ANYWAY, on Wednesday I passed a quarter size piece of my bladder and it has be on since. I would love to chat with you and be there for you because I UNDERSTAND!!!! You can privately email me or we can chat on this forum. I look forward to hearing from you! GOD BLESS!!

[bamafan]

Hey, ladies I am from Alabama also although I live now in Tennessee. Alabama will always be home. Grew up in Glencoe, AL. I have IC also. I have only been diagnosed since Feb. of this year. I am having alot of trouble with my birth control and Elmiron. My Elmiron does not bother me but add the bc to it and I have breaking out on my neck. I go to Chattnooga to the doctor, I really like him his nurse is wonderful. I hope both of you have good doctors also. Bamafan

[sineater]

I'm in Montgomery, AL

Hey Christy,

I was diagnosed in 2000 with IC. Looking back I believe I have had it since 1991. I have 2 boys in college and 1 daughter who will be a senior next year. After being in alot of pain sometime around 2000, going to doctor after doctor, getting a hydro and coming out with vulvadynia, I went into remission for about 7 years. I call it remission cause I felt normal. However, I did have some UTI's during that time but was given antibiotics and my bladder went back to normal. However, I had a UTI about 6 weeks ago and everything has blown up again. I am trying alternative meds now and am getting some results. I would love to talk with you. You can email me at [email protected]! Keep your hope alive!

Linda

[Wet Badge]

Well, it is both comforting and saddening that I see so many letters of input from Alabama. I happen to be the one in ten males who contracted this wonderful little ride of life. I am a police officer in Decatur and have been diagnosed for about 600 years.
For me, the best attitude is to just accept the fact (now this is for ME ONLY) that I must learn to accept the pain and map out a way to carry it with me day in, day out. I have been through a whole slew of doctors, some rumored to be famous for their reputation when it comes to treating this ailment. I fired each and every one of them after they each took their tunrs at making me feel worse when I did not think that possible. I have dealt with the doctors who don't want to help you with pain by prescribing analgesics....I fired them REAL fast. The so called "Best there is", walked into the exam room, picked up my chart looked at it said one word..."typical" and walked out. I fired him shortly after that.
I guess my point is that everyone has to find their own path to walk. It's sort of like tuning your car, you have to do this and try that until you get where you can stand to be alive then continue down that path and maybe, just maybe some brain-child will come up with something that will work for YOU. Until then, just keep on walking the walk and talking the talk, tomorrow will come (sometimes unfortunately).
The smartest thing I did was give in and choose a psychiatrist. I fought it long and hard, but he has helped me with my dealing with the pain far more than any pill or potion or test. I have a trio of docs (just like the book says to do) and they know one another and communicate with each other (RARE, VERY rare).
Remember there is no cure for this devil, you must accept "it" and make it a part of your life OR it will take you by force and that my friends is no fun at all.
Oh and by the way, if you utilize a narcotic analgesic, NEVER, REPEAT....NEVER allow a doctor to give you a drug called "nubain". It is frequently used to supress nausea and vomiting. It will send YOU over the rainbow of pain and with kind understanding doctors (where is one of those?) you will come up from the pits of hell in about five to seven hours. REMEMBER......N..U..B..A..I..N..

I don't know much, but I have been through most all of the common treatments and a few experimental ones (apparently I make an excellent guinea pig). If I may help or listen, I remain ready to "serve" (you know, like in protect and serve).

Thank you for listening with your eyes,

FD


PS: As is the case with most law enforcement officials, my spelling is woefully inadequate, please forgive my shortcomings.

[sineater]

Wet Badge,

I love your humor! Thanks for posting. I find it interesting that a Psychiatrist helped you the most, because I am a Licensed Professional Counselor and I am having a really hard time getting a handle on this latest bout. However, I had decided I had to accept it, I know that much. I'm just not there yet. It is frustrating with this buggar that you don't know what it will do tomorrow (or for the next hour for that matter) and you pray it will do the decent thing and leave. It has left before with me and I pray it will do the same at some point soon Anyway, I am currently trying accupuncture because I don't like what the medical community has to offer. I was wondering what you have tried. I don't want you to have to write a book, as I know how it can be, but have you tried any alternative medicine or diet changes? Also, what made you get on this site now, as I see you have had this ticket for 'over 600 years'?

Sineater

[jpwilkinson]

I'm another IC patient in Montgomery. Unfortunately, I have had this disease since the Stone Ages when hardly anyone knew about it. After suffering for many years, being told I was crazy, going to numerous uros who not only did not know what was wrong, they were rude and not compationate. Thank God, I heard about Dr. Keith Lloyd at UAB in Birmingham and was diagnosed with IC by him in 1990. He is an absolutely wonderful physician and person and an expert on IC. He has treated me since then but I have also tried alternative treatments including acupuncture. My husband kept insisting that we go to the Mayo Clinic so I finally called about six months ago and was told they are no longer taking new IC patients because there is nothing they can do that my local doctor can't do. I discovered another young Uro in Montgomery about two years ago, Dr. William Moore. He is wonderful and only treats women and is willing to work with patients with IC. He has injected Botox in my bladder on two occasions. The first time it worked and the second, it did not. I still have retention from the last treatment in March. I am now trying the Lidoderm Patch(which is 5% Lidocaine) 12 hours with and 12 hours without along with my other meds such as Cymbalta, Valium, Darvocet, Elavil and Urised. I have had only mild pain in the past two weeks with the patch. My pain has become increasingly worse over the past two years and I am about ready to have my bladder removed if this does not work. I had to retire early from my job because of the stress. I feel for you young people who have this terrible disease and have children to raise. But hang in there and keep trying whatever you have to and keep praying. I know there will be a cure in your lifetime. You are also very fortunate to have access to this wonderful website. It has been so helpful and comforting to me. Wish we had had it many years ago.

If you want to ask any questions, please feel free to do so.

[Wet Badge]

Jp


Thank you for your words of wisdom, I devoured them slowly and carefully.
I hold out no hope for any cure in my lifetime, now don't think I feel negative in realtion to this point of view. If I resign myself to the fact that I must live with my little friend from now until I go to the trunk of my Buick (I am a future alumni of the Body Farm at UT), I get disappointed much less.
You are lucky to have Dr.Keith, they say he is the best in this state anyway.
My urologist allows me to read his copies of various Urology specialist magazines so I can cath up on all the latest stuff (he of course reads them first). I really like him and that is VERY important to me.
Please think LONG and HARD before you pursue the bladder removal path. As my pain doc says....."that is some DEEP.....DEEPsurgery. It is quite involved and just to be honest I don't think you will find anyone who will do it unless you are damn near bedridden. I know this because it was my FIRST idea. My reasoning was that I've already lost this part and that part, what's one more. He strongly disagreed and flat out told me that it was not an alternative until I am on my last leg.
I also recommend a psychiatrist for you. There are TONS of people who see psychiatrist for reasons other than mental illness. Many anti-depressants have a nerve pain suppressant value to them, as do some anti-ulcer meds. He also gives me someone to talk to when the pain gets to me. When he says he is available to me ANYTIME, he means it. I have had docs tell me that before and one particular time when I was simply beat down by the pain and the side effects of the drugs, I was really considering flossing my teeth with my Beretta (a handgun), I tried to call him and he was "too busy" to even talk to me. I never called him back and never returned to him for any visits. It was funny when his office called me back, oh, about a month later and ask me oh so seriously........."Are you having thoughts of suicide?". I got a really good laugh out of that and uttered the words "Your fired" and hung up the phone (isn't IC fun!). Doing what I do can really lay a few layers of emotional pain on you.....add IC and uh-oh you have trouble in the making. The shrink helps me to turn lose of those things I get exposed to at work AND he helps me with turning lose of the pain.
JP, I know it sounds like I am a doctor shopper, not true, in fact I have had the same docs for over five years now. I spent fifteen years in the vice unit putting people in jail for abusing pain meds and believe you me, did I get an education as to how the other side of the fence really is. I could NEVER break a law pertaining to medications, but I have a much better understanding of what makes some people do it. The majority of the junkies I know turned into what they are with an initial real illness and they turned the wrong way. I DESPISE meds that make me feel anything but normal (you know writhing with pain normal) and it took me a loooong time to find one that would not do that, but I have.
Pain is my constant companion, we get along most of the time, sometimes we fight and he always wins (I hate it when that happens!).
Prayer is a valuable tool IF it is doable for you. Some are uncomfortable with it, but man oh man do I utilize it. I have a Friend who is available to listen 24/7 and I take advantage of that.
Well, I'll shut up now, I have things that must get done.

Good Luck JP, I will mention you and all who make use of this message board to my Friend.

Wet Badge

[jpwilkinson]

Thanks WetBadge for your reply and suggestions. Yes, I have seen a Psychiatrist, Psychologist,Therapist and Ministers for therapy. They helped a great deal at the time but now I just vent to my best friend of 40 years. You see, I started having bladder problems in my early twenties and am now sixty-two, so I may be on my last leg so to speak. I also thought about taking the easy way out years ago but couldn't do that to my children and family.

I also have many wonderful people praying for me everyday and I do volunteer work at my church and work with women in prison which gives me something to be responsible for, gets me out of the house and keeps me from thinking about the pain. It would be so easy just to stay in bed most days feeling sorry for myself. I do realize that I am very blessed in many ways and thank God for that.

Take care and God Bless You.