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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
Paola
I am so sorry for what you have been through. I am not a patient of Matia's. I am thinking about it but live in UK and don't know if I could make the long trip.
I'm have tried long-term antibiotics and it has left me with thrush and candida problems - so I wouldn't recommend it. I haven't tried any other orthodox stuff but I'm convinced that alternative medicine holds the key to recovery but I think you have to be very careful about who u choose as most alternative practitioners have not heard of IC and don't understand what we go through. That's why I'm attracted to Matia -someone who knows what she's talking about.
Have a look at the web site: www.icaroadtorecovery.com/
It's set up by some patients of Matia's and has some good info.
Hang on in there!
Jane
This is such a horrible disease, and to have to deal with ic on top of cancer is absolutely horrible, but i know the both of us will be ok. I personably met matia (i added to my story) and i recommend you go see her. She does truly understand the horror of IC. Just take the trip and then everything else will be via phone and email. I have 100% faith in her and her methods. what exactly have your symptoms been???
Re: cancer and IC
Paola:
I read your story and it brought tears to my eyes. It truely is sad what you have had to deal with. I admire your strength and courage. I am so pleased that you have found Matia: her knowlege, care and guidance is the miracle so many of us have prayed for.
Miracles do happen -- I have seen and spoken to people who doctors had given up on. Read Louise Hayes biography (she too had cancer) and books. Read also Donna Eden's biography. The success stories on www.icaroadtorecovery.com are all results of the wonderous/miraculous work Matia does. I will keep you in my prayers. My story is on the website listed as E-Texas. Wishing you good health.
Edwena
Dwee I just wanted to let
Dwee
I just wanted to let you know your story on www.icroadtorecovery.com really inspired me. Its reassuring to read someones story and say "Hey, i feel those exact symptoms, im NOT crazy after all!!. Reading successs stories really do help, even though in the back of my head i have these nagging thoughts that with my luck ill be the one with no relief. I try to steer clear of those thoughts, but its hard with what ive already been put through. In the end, I know ill get my miracle. At this point ive sworn off urologists because NONE of them have given me any answers, and even less compassion. I would walk out of their offices with tears in my eyes and prescriptions in my hand. Im soley dedicated to matia's methods from now on. Also, i googled Louise Hayes, i saw her on Oprah once!
laugh often
Paola: I too did the "everyone else healed and with my luck I'll be the one who doesn't". I had to stop myself from doing/thinking it. I really beleive that what we think and/or say we manifest. I have two friends who have cancer. The one has luekemia. Was diagnosed over 20 years ago. Has had two bone marrow transplants over the 20 years. Lost a lot of her hearing, lost her hair, you know all the details. Doctors believe she is a walking miracle. She has a fantastic sense of humour and a love for life. I think it's her attitude that has saved her. My other friend got breast cancer twice. 10 years apart. Also has a great sense of humour, laughs often, people gravitate towards her because she is so much fun. Like friend number one, I think it's her soul and spirit that keeps her going, and she is now cancer free and still has both her breasts. So, rent some comedies, watch them and laugh a lot. When do you get to start matia's diet? Take care. E
Im doing it anyway
Hi E,
Im 38 days out of my stem cell transplant and im desprate for all these precautions and prescriptions to end!!! After you get an autologous stem cell transplant (my own cells were given back to me, not a donors which carries more risk) You are literally in a bubble for 100 days from transplant. I was so excited to get started on matia's plan, but of course, my oncologist is against me taking any herbal supplements until my 100 days are up. On top of that, im on 4 prescriptions (one being birth control, though im sure i can stop it next week since my platelets will be high enough) I HATE BIRTH CONTROL PILLS!!!!!!!! another is nuerontin to help with the nueropathy the chemo caused. Im getting waned off that as well so ill be down to two pills that i have to take up until my hundred days. I hate that in addition to the chemo, i have to continue to pump my worn out body with more chemicals. Though i feel OK minus my bladder, my body just feels toxic. Well, i emailed matia and i asked if starting her plan now in a time of pills, and banned herbs would be wise. She told me to start List one thus my past two days have been water, cooked cabbage, meat, and brown rice. The bland food seasoned with salt and garlic powder i could deal with. Its the WATER ONLY rule that has me going insane. Sometimes when your throats dry, water doesn't do anything. i can't have a cough drop or anything. One things for sure, ive been keeping very hydrated. I would KILL for some coffee or tea right now (and biscotti). Anyways, im on DAY 2 of my diet and obviously ive noticed no improvements with my bladder (i have a problem with patience). I literally was expecting no symptoms after one meal. My boyfriend just shook his head and told me Rome wasn't built in a day. Before all the chemo my IC was actually bearable. no frequency, just a constant dull pressure that lingered 24 hours a day, and this heavy bloated feeling. I dreaded wearing jeans. I had no pain or burning or any other symptoms outside the bladder (at least not that i noticed) After all the chemo, my bladder has worsened. The pressure increased, i urinate more often (still not at night) and when i go urinate, though my bladder feels SO FULL, i pee a short stream with sporadic pinches (burning?) during my stream and after. For about half an hour after urinating, i feel even more bloated. standing is so uncomfortable. Im amazed i haven't run out of tears from all the crying i do. I give myself headaches from the agonizing screams i let out. Im so blessed to have beat cancer (this time for good. Amen) but recovering from it along with IC is an absolute nightmare. I need a lot of support. My spirit is worn but not gone. I will be healed.
Hang in there
Paola: yes you will be healed. Believe with all your might!! Spark that spirit that is still there. Don't let this dis-ease become your master. Its on your path, for some reason, and you must stay in control of it. The coffee craving gets better, takes a little while, hang in there. Actually looking back, i remember craving the coffee, and tea so much and pretty soon I was back to drinking it, the time goes so quickly and list one will become history. This diet, phase one, is not forever. Remind yourself of that constantly. It is just for a little while until your bladder feels stronger. Try drinking some warm water, it can be soothing, almost like a good cuppa tea. I remember during phase one of the diet for me, I would go to the grocery store and linger in the coffee isle, or sit in a coffee shop just to get the smell of the coffee. When you breathe the aroma you can almost taste it at the back of your throat. I did the same with chocolate. I have two children and when they ate chocolate I used to smell the empty wrapper. Sounds crazy, but it worked in some warped way. I don't do it anymore, once the intense craving passed I was better.
About the meds you still have to take -- I know we don't like to do the chemical stuff and that it does make us feel toxic and bad, but at this stage it sounds like you have no option but to take it. I am a believer of "what we say/think we manifest", so when you take your meds try not to think about them being toxic, rather think that this is what you need to do for your body in order to be cancer free forever. These meds will be done soon, and your 100 day mark will come, but for now, do what you must with a good attitude. I get the bloated thing too. Don't be dispondant now, I know you read my story so you know that I have been in treatment for almost 3 years, but I have also had this colon for 41 years and I was diagnosed with IBS at a very young age, so mine will take longer too heal. Hopefully your bloating will heal quicker. My kids think I am hiding a pregnancy and they keep asking me when the baby is coming. Its quite crazy huh, how our bellies can distend like that?!! The odd thing for me is in the mornings when I wake up I have a flat belly and at night I look 7 months pregnant. I wonder how Matia got blessed with so much patience becuase my belly, I am sure, has given her many a headache :) I know though that it'll be fixed. My bladder has come such a far way, my colon too -- I don't get painful spasms in my colon anymore, its just the blowing up!! Well, I have written a lot now and I am off to bed, but before I go --your tears and your screaming -- no wonder your throat is sore young lady!! Cry if you need to, its very cathartic, but spare your throat :) Tell your bladder everyday that you love it. Take good care. Till later. E
You have an amazing spirit Paola
I have been reading your posts for the last few days, wanting to write something because I feel you are a truly amazing person for the endless amount of courage you have in dealing with all that has been dealt you. You really are an inspiration to all of us who are dealing with IC. I myself believe that you will reach the end of your journey and have in the future a very rewarding long life. You need to remind yourself daily even during those dark moments of the things that you have in your life to be grateful for and draw on those for extra strength. I have myself gained a tremendous strength from reading your posts, and for that I thank you. Hold your head up high, be proud of who you are, you are on this earth for a specific purpose, so believe there are good things in store for you, for all of us. I know it is hard but try and just have a little patience.
Greta
Paola
My symptoms of pain, burning, urgency and frequency started after a keyhole gyny surgery turned into an open surgery because they got the diagnosis wrong.
It was not a fibroid as they thought - they were too lazy to do an MRI scan.
I had a lump cut out (benign) and since then my bladder has not been the same. U never think bladder function and comfort can be lost - it just never occurs to you. I think that's why other people find it hard to understand how devastating this illness is. My symptoms have improved due to IC diet and acupunture but still have a lot of discomfort.
Your positive attitude is great! I've learnt to look 4ward and also to concentrate on the recovery rather than the illness. Focusing on small improvements seems to help me cope. Reading the success stories is uplifting.
As u say, we will both get there. Just need oodles of determination and positivity!
Wow
Paola,
I am speechless. Good for you for taking your health into your own hands. You are a fighter, and that is good. I strongly believe that Matia will be able to get you better. Having done a lot of research, I can truly say that I think with her regimen including diet/herbs/etc, you will be better. There is a ton of research pointing to sugar being the precursor to cancer. There are studies done showing that when you bathe breast cells in estrogen and insulin that it increases the cancer rate some crazy amount. Every time you put sugar in your body, you spike your insulin which causes a lot of problems. That is sugar in any form. If I can find the research, I will post it. Many people who knock sugar and all of its forms out tend to do better fighting cancer. Wow... I am still in just breathless mode after reading your story. I think that when you are able to nourish your body with the proper diet, you will be much more ahead of the game. Please keep us all posted on how you are doing/feeling as you go through such a difficult time. We are all here for you! I definitely can relate to the questioning of God. When I got IC I was really mad for several reasons, but when my son got IC, I was livid! I wouldn't wish this on my worst enemy. But... then I stopped and realized that in my opinion, God wants me to do something with my knowledge and what I have went through, I am not really sure what that is yet, but I am working on it. Maybe I got sick so that I could help my son? I don't know. I am glad that I got it before he did because I can't imagine subjecting my 6 year old son to all of the horrible tests, doctors, regimens etc that I went through. You hang in there. We are really all here for you!