After a year of crying my eyes out, questioning God's existance, and feverishly surfing the web reading the horrors of this elusive "IC", Ive mustered the energy and found the time to write my story...............
First off, i want to say that im 22 years old, and while my friends all sleep off this weekend's hangover, im in my room wondering why me. Up until May 2004, my life was that of a care-free 18 year old. I went to school, did great, partied VERY HARD (yes, that includes alcohol and ciggarettes) and never hand any health problems whatsoever. Though i led a fairly healthy life, about one year prior to may 2004, i began to feel immense fatigue that i wrote off as normal because of a 7:30 am class and a part time job. I also began to cough up some blood mixed with phlegm, so i stopped smoking newports. I lost A LOT of weight and just assumed my gym class was just very effective. I had night sweats where i would wake up drenched and shivering. What was most concerning to me was that with every sip of alcohol (beer or liquer) i got this incredibly painful, pulsing pain in my neck right above my spine. It happened without fail EVERY time i took just a sip. the only way it went away was when i got drunk enough which led to other regrets. anyways, i did my part and did go to my doctor just to tell her what ive been feeling. Everytime i went, i left with a new prescription and a new diagnosis. Eventually i couldn't sleep because the pain on the left side of my body was unbearable. I self medicated with motrin and nyquil just to be able to sleep. First i was told i had asthma and prescribed an inhaler (this was ridiculous now that i look back on it). after the inhaler just made me lightheaded, i went back and was told i had a cyst in my left breast and surgery was scheduled. Thank god i had an appt. with my gyno soon after and he dissmissed the claims of a cyst and said my breasts were clear. anyways, blood tests revealed nothing until a dr. with some sense told me to get an X ray. I did, and life as i knew it was changed for what seemed like forever.
I was rushed to the nearest hospital and quarantined. I was told i had Tuberculosis. i was ambushed by the center of disease control who demanded the names of everyone i came into contact with. I was placed on TB medication which i threw up on a daily basis. My TB tests kept coming back negative but doctors insisted thats what i had based on the mass seen on my x rays. A month later,( of which i stayed in the hospital) a biopsy of the mass was taken and my worst fear was made a reality. I had stage 4 Hodgkin's Lymphoma. I was rushed to a different hospital and started chemo the very next day. I had 6 cycles of chemo and 21 days of radiation. I was bald and 95 pounds but after 6 months of treatment, i was in remission. I thanked God and never imagined anything like that would ever happen to me. what did i know..........
Fast Forward to April 2007. I was in college, had a job, and super excited for the spring break trip i had planned to panama with all of my friends. First day there and i felt the begginings of a UTI. Ive had one before so i knew. It was bearable though and i was in paradise so i ignored it for about three days into my trip. STUPID MOVE. I ran to the clinic on the resort and was given a 7 day cycle of cipro which i always took with some sort of tropical alcoholic beverage. The burning and frequency subsided right away but the pressure remained. I ignored it and said ill deal with it in the states, i was to busy playing beer pong and eating questionable buffet food.
First week back and i went to see my doctor ( a new one). He tested my urine and said it had bacteria and prescribed amoxicillen. a week later i still felt this strange pressure on my bladder. Even after i peed, my bladder still felt full seconds after emptying it. I had this feeling 24 hours a day. Luckily i slept through the night, i never woke up to urinate. I had no pain, thank god, or burning, just this feeling of discomfort that i knew wasn't supposed to be there. I only felt slight relief when i crawled up into a little ball on my bed. Standing was uncomfortable, i hated when the train took too long to come or when i had oral presentations in class. My bladder felt heavy, i can't even describe it. Jeans were now only worn on special occassions since they put even more pressure on my bladder. i also developed this belly that i could never seem to suck in. Months passed, after 1 doctor, 2 gynos, 4 urologists, and 1 urogynocologists i still had no diagnosis or answers. I did a urodynamic that was totrally normal and 2 cystoscopy's that (thank God) showed a normal, pink, healthy bladder wall. What was wrong with me??!!?? I was left with nothing but a body pumped with tons of cycles of cipro, amoxicillen, augmentin, nitrofurantin, urelle, sanctura, pyridium, valium, diflucan, ditropan, AZO, and prosed. I was convinced that this is how i would live the rest of my life. The last doctor threw her hands up in defeat and simply said "i don't know what to tell you, maybe you have interstitial cystitis". I read of this interstitial cystitis as i googled "bladder pressure" in hopes of diagnosing myself. Bad idea. I cried as i read the horrors of elmiron and the word INCURABLE rung in my head. I said to my self "fuck that" i lost my hair once before and there was no way i would allow elmiron to cost me one hair. I went for acupuncture. that did nothing but set me back hundreds of dollars. (i think the guy was just an idiot, im not knocking the practice at all, i belive in it strongly).
Anyways, fast forward again to dec 2007. I was blessed to find www.icroadtorecovery.com. that is how i found Matia and knew i was going to be healed. Jan 9, 2008 i was on a plan to los angeles. I met with matia, we sorted out all the details. i was 100% sure this was my answer. God answered my prayers!!!! she's a sweet, and totally inderstanding woman who doesn't judge and truly cares. Unlike all the doctors ive seen here in new york, Matia didn't pull out a prescription pad and simply make a pointless follow up appt. which, in my opinion was their way of simply cashing in on my unfortunate situation. The diet, which i considered totally do-able, was to start the minute i got back to NY. I sent my mom out to get all the spelt/kamut bread she could find and i got all my herbs. I wasn't even on the diet one week when my oncologist called. They found a small spot on one of my routine petscans..........
Jan 23, 2008 i got the results back from the small surgery i had to remove the mass in question. I relapsed. The hodgkins Lymphoma was back. One month shy of my 22nd birthday and i where i was going to throw my party was no longer my daily worry. Luckily, the walnut sized tumor was removed during the small surgery i had and all the disease that was left was microscopic. they caught the cancer very early and my prognosis was always excellent. Unfortunately to ensure my life the 6 months that followed were an absolute nightmare. I had 4 cycles of VERY strong chemo and finished treatment with an autolougous stem cell transplant. its July 2008 now and im home recovering. My marrow is like that of an infants so for the next 60 days im under strict precautions (house arrest, anyone???) Ive amazed doctors with my recovery. My marrow has engrafted VERY well. Im in remission again. Amen.
Back to battling IC. I also wanted to mention that its been suggested to me that the chemo i received in 2004 may have been what triggered my IC. "Great" i said to myself, "I've just damaged my bladder even more with these other 4 cycles of chemo". Also, ive never taken birth control, but ive been put on it to suppress my period temporarily. I don't know how women take this. Ive been a whiney, crying, puffy, crampy mess!!!
I just want to finish up by saying that i know once im cleared to take herbal supplements (i can't right now) im running to matia to get me started once again. I know with God's help im going to be healed. Im desperate to get started again. If anyone has been through cancer, id love to hear from them. Just for some words of encouragement. I beat cancer twice and im not even 25, and as i sit at home staring in the mirror waiting for sprouts of hair on my head, i just remind myself now and again that i have a long, beautiful, and HEALTHY life ahead of me.
God Bless
JaneJones
JaneJones
Greta