According to the Mayo Clinic the average lapse between onset of IC and diagnosis is four years. Four years!? That's college. Looking back I wonder, "How long have I had this?". For the past two years I have been in and out of doctor's offices and emergency rooms. I have kidney stones and a history of UTI's (urinary tract infections), which are typically the conditions that mask the fact that IC could be the real problem. I have been on every antibiotic known to man, and yet every other week or so it felt like I was developing a new UTI. It really started to put a strain on my life, not to mention my relationship with J. I felt dirty, infected, contaminated. How are you supposed to be emotionally connected to your partner, when you are keeping them at a distance because you think you're gross?
About a month ago I was home in Texas for labor day, with my family and J. My mom, sister and I had spent the morning chatting and enjoying the first good weather Texas had had all year, while my dad took J golfing. As we sat by the pool sipping spritzers (how waspy is that picture?) I started to feel the all too familiar pain in my lower back and pelvis that I had come to associate with kidney infections. Are you kidding me, body? I am having such a good time. Don't do this to me now! I was on 3000 mg of antibiotics at the time, for various infections, including yet another UTI. Between all the medications prescribed to me by my family physician and urologist, I was taking ten different medications and over 25 pills a day. This took a serious toll on my physical and mental health. A few days prior to my trip to Texas I had a serious meltdown. We're talking can't stop crying, raccoon mascara, snot bubbles, HOT MESS meltdown. No 25 year old who isn't living with cancer should be on that many prescription drugs! I was carrying around a pharmacy in my purse, probably setting myself up for a mugging by a drug lord. And the irony of it all is that I would soon find out that they had nothing to do with the real problem.
I excused myself upstairs to lay down and hopefully work through the pain. Then, I felt a new pain that I had never felt before. It felt as though my urethra was being torn in two. The pain was so unbelievable I couldn't stop vomiting. I spent the rest of that trip and the weeks after in excruciating pain, thinking that I was passing kidney stones. Imagine my surprise when my x-rays revealed I definitely wasn't. This is when my doctor brought up the term IC. She described it as an overactive bladder. I thought, "Ok, well I do pee all the time, but what about all the pain?" She gave me pamphlets about IC that I'm pretty sure I threw away as soon as I got home. This was just one more thing they could use to prescribe another pill. I was definitely in the Bitter Barn. In the past two years, doctors have suspected I have a number of conditions. I have been tested for celiac disease, lupus, MS, every STD there is (that's a fun one to explain to parents), and the kicker...I was told I have diabetes. I DON'T. The past two years have been a roller coaster of diagnoses, antibiotics, specialists and more blood tests than I can count. To top off this fun sundae with a cherry, I have horrible insurance, so this journey has not been a cheap one. I am so lucky to have parents who support me and don't rub it in when I have to make the dreaded "help" phone call. But not everyone has that support, so how much worse is this process of misdiagnosis for others?
Another thing that really burns my cookies when I think about it, is that the Dr. who diagnosed me with IC is the third urologist I have seen in two years. The first was a total jerk who made me feel dirty and infectious and the second performed a surgery to remove my kidney stones, but didn't find anything else wrong with me. I have been bounced around from doctor to doctor and it is so frustrating. I wonder how many people out there are dealing with this pain, probably keeping it to themselves because it is so embarrassing to talk about, or have had a doctor make them feel like a hypochondriac or an untouchable? As a pre-med student why had I never heard about IC? So many why's are taking up space in my brain right now.
I have spent two years feeling sick and tired of being sick and tired. I have felt like a hypochondriac and I have lost the joyous person I once was. I have wondered at least once a week when J is going to get fed up with all my health drama, or when he will start thinking it's all in my head. I know my friends and family are sick of hearing about it. Finally knowing what is wrong, even though it sucks being diagnosed with IC, is such a relief because I feel vindicated. Something IS wrong. I think the hardest part of being sick, for anyone, is not knowing what is wrong, not being able to voice your pain, and not being able to find relief because how can you fix something that you don't know is broken?
To everyone out there, diagnosed or not, if you know in your heart you are sick, that something is wrong, don't give up. Keep fighting until you find out what is wrong. Don't let your doctor bulldoze you. Don't take no for an answer. Don't let naysayers make you feel ridiculous. We have to be our own advocates, because no one else can feel what's wrong. It took me two years to find out, and for the first time I feel like I have my life back and that I'm in the control seat again. I want everyone to feel that too.
Friday, September 30, 2011
Thursday, September 29, 2011
Pissypants Unite!
After sharing my first blog yesterday I received an overwhelming outpouring of support and love. Every time I woke up last night for the dreaded post-op pee, I would have another email, another message on facebook, another text supporting me. It was impossible to feel sorry for myself with such good feedback. I have to admit I was terrified to put all my personal business out there, but when I received messages from people I haven't spoken to in years telling me they are IC sufferers as well I knew that sharing all this was the right choice.
There is something great to be said about being part of a community that understands your struggles, whether they are medical, emotional or spiritual. As I did more research last night I kept running into the same cookie cutter descriptions about what IC is, but to my astonishment a lot of the major "support" sites would only let you be a member with a monetary donation. Anyone else insulted?! IC has already cost us so much, why should we pay to receive a newsletter, magazine, or join a forum? Yes, the money goes to research and that's wonderful, but right now I still have sticker shock from having to cover 15% of my surgery and the endless co-pays that came with the long and winding road to diagnosis. I know I haven't totally tapped the IC support system out there; after all, this is only day two for me and I am still flying high on the magic carpet ride called vicodin. So for now, I will continue to share my story while I search out all the support I know I will find.
Thank you to everyone who has shared their story and words of encouragement with me. Anyone have stories they would like to share about the long journey to diagnosis? Even if your condition isn't IC, we all know what it feels like to struggle to find out what is wrong with our health, and the toll it can take on our sanity! Thanks for reading and I look forward to learning and sharing more.
There is something great to be said about being part of a community that understands your struggles, whether they are medical, emotional or spiritual. As I did more research last night I kept running into the same cookie cutter descriptions about what IC is, but to my astonishment a lot of the major "support" sites would only let you be a member with a monetary donation. Anyone else insulted?! IC has already cost us so much, why should we pay to receive a newsletter, magazine, or join a forum? Yes, the money goes to research and that's wonderful, but right now I still have sticker shock from having to cover 15% of my surgery and the endless co-pays that came with the long and winding road to diagnosis. I know I haven't totally tapped the IC support system out there; after all, this is only day two for me and I am still flying high on the magic carpet ride called vicodin. So for now, I will continue to share my story while I search out all the support I know I will find.
Thank you to everyone who has shared their story and words of encouragement with me. Anyone have stories they would like to share about the long journey to diagnosis? Even if your condition isn't IC, we all know what it feels like to struggle to find out what is wrong with our health, and the toll it can take on our sanity! Thanks for reading and I look forward to learning and sharing more.
Wednesday, September 28, 2011
How to throw a fabulously glamorous pity party!
First, think about your decor. Hospital chic is the look you're going for. Taupe walls, beds with toddler safety rails, a ridiculously high-mounted television and plenty of beeping machinery are sure to set the mood for this year's see and be seen pity party. Make sure you have the right outfit, of course. My personal favorite is soft, tie-back loungewear and don't forget, nothing feels more glamorous than going commando. Menu, you ask? Sprite and saltines, graham crackers if you're feeling fancy. The right guest list will include plenty of nurses, a family member or two and don't forget those doctors! Now, with just the right cocktail of general anesthesia and painkillers you are set to throw yourself the best pity party ever!
At least, that's how mine went.
Today I was diagnosed with interstitial cystitis. Now, if you're about to go google that shit, stop right there. And whatever you do, DON'T read the Wikipedia page! Boy will you get an eyeful of "You've got to be fucking joking." Before you can even get down to what interstitial cystitis (IC for short, because let's be real, I type like a 3rd grader and that's going to get really old, really fast) is you will see words like "debilitating", "severe", "disabling" and phrases like "quality of life resembles that of chronic cancer pain." Thanks, Wiki, because I wasn't worried enough.
IC is a disease of the bladder which causes chronic pain and a whole host of urinary troubles. From the little bit of info I've gotten from my doctors and reading material, they aren't really sure what causes it or what the pathology really is. There is no cure and it gets worse as time goes on. Awesome possum. The more I search, the more I find out how little information is out there because, similar to infertility and other deeply personal health issues, there's not a lot of dialogue happening. Even if I'm only talking to myself, I am determined to keep the conversation going. I've never been super graceful at the silent sufferer thing.
Now, let me preface this by saying, as far as I can tell, my IC is only mild to moderate at the moment, even though it will likely get worse as time goes on. I know that there are people out there who are suffering a hell of a lot more than me and in no way will I be making light of that suffering. I will, however be busting the balls of my own situation because honestly, when I read ANY of the literature out there on IC, I want to curl up in the fetal position and stuff my face with cookie dough. Finding some humor in this situation is the only way I can keep from crying right now, so that's my current treatment plan.
Now back to this fabulous pity party of mine. As everyone knows, there is always someone who shows up at your party who was not invited. For me, this morning, it was the lovely lady sitting next to me in pre-op. She must have overheard J and me talking about my doctor because she was a patient of hers as well. She asked if I had IC and I told her that today they were performing the procedure to determine whether I have it or not. She proceeded to scoot closer to me and I genuinely thought she was going to grab my hand. She said, almost with tears in her eyes, that she has had IC for 10 years and begins to tell me in great detail of her pain and suffering and that she will pray that I don't have to go through her ordeal. In most situations, when strangers start telling me about personal details of their life I am an empathetic listener and I can easily interject with "Oh my"s and "Bless your heart"s. In this moment however, I was frozen, struck by the pain in her face as she told me about the daily struggle of trying to make people understand what it means to live with IC and the chronic pain it delivers. I think my pity party started a little ahead of schedule, right then and there.
So, cut to the recovery room, where I am severely doped up. In walks my doctor with a series of pictures and the words, "It's definitely IC. We'll meet in a week to talk about treatment options." And that's it. There I am, alone, confused, listening to the nurses talk about Amish people who are using "studs" for sperm donors because they are becoming inbred (I wish I was joking). I laid there, one giant crocodile tear rolling down my cheek, trying not to start my pity party without any guests. As soon as they wheeled me into the room with J and he said, "So did she tell you?" I started bawling. I thought about the woman in pre-op who has this surgery every six months just to relieve the pain. I thought about all the things I was going to miss out on because I would be stuck in the bathroom. I thought WOE. IS. ME.
Now here is the most important part of a fantastic pity party....it has to end sometime. Right now, sure, I'm in a decent amount of discomfort and a little bit of pain, but a lot of sufferers of IC are disabled, so in comparison I'm doing cartwheels. I can wallow, stew and ruin the other parts of my life that are simply overflowing with awesome, or I can live the life I want, just to spite my bitchy bladder. It will probably get worse one day, but today is now and as major as the pity party was, it's time to move on with life. IC will just have to be a part of it.
The purpose of this blog is to vent whatever feelings I am having, good or bad, and to provide a forum for people like me. Today is the first day of my life with IC and I would love to get feedback, tips and tricks, venting and anything else from those with or without IC, urethral syndrome, prostatitis, etc. Thanks for reading!
At least, that's how mine went.
Today I was diagnosed with interstitial cystitis. Now, if you're about to go google that shit, stop right there. And whatever you do, DON'T read the Wikipedia page! Boy will you get an eyeful of "You've got to be fucking joking." Before you can even get down to what interstitial cystitis (IC for short, because let's be real, I type like a 3rd grader and that's going to get really old, really fast) is you will see words like "debilitating", "severe", "disabling" and phrases like "quality of life resembles that of chronic cancer pain." Thanks, Wiki, because I wasn't worried enough.
IC is a disease of the bladder which causes chronic pain and a whole host of urinary troubles. From the little bit of info I've gotten from my doctors and reading material, they aren't really sure what causes it or what the pathology really is. There is no cure and it gets worse as time goes on. Awesome possum. The more I search, the more I find out how little information is out there because, similar to infertility and other deeply personal health issues, there's not a lot of dialogue happening. Even if I'm only talking to myself, I am determined to keep the conversation going. I've never been super graceful at the silent sufferer thing.
Now, let me preface this by saying, as far as I can tell, my IC is only mild to moderate at the moment, even though it will likely get worse as time goes on. I know that there are people out there who are suffering a hell of a lot more than me and in no way will I be making light of that suffering. I will, however be busting the balls of my own situation because honestly, when I read ANY of the literature out there on IC, I want to curl up in the fetal position and stuff my face with cookie dough. Finding some humor in this situation is the only way I can keep from crying right now, so that's my current treatment plan.
Now back to this fabulous pity party of mine. As everyone knows, there is always someone who shows up at your party who was not invited. For me, this morning, it was the lovely lady sitting next to me in pre-op. She must have overheard J and me talking about my doctor because she was a patient of hers as well. She asked if I had IC and I told her that today they were performing the procedure to determine whether I have it or not. She proceeded to scoot closer to me and I genuinely thought she was going to grab my hand. She said, almost with tears in her eyes, that she has had IC for 10 years and begins to tell me in great detail of her pain and suffering and that she will pray that I don't have to go through her ordeal. In most situations, when strangers start telling me about personal details of their life I am an empathetic listener and I can easily interject with "Oh my"s and "Bless your heart"s. In this moment however, I was frozen, struck by the pain in her face as she told me about the daily struggle of trying to make people understand what it means to live with IC and the chronic pain it delivers. I think my pity party started a little ahead of schedule, right then and there.
So, cut to the recovery room, where I am severely doped up. In walks my doctor with a series of pictures and the words, "It's definitely IC. We'll meet in a week to talk about treatment options." And that's it. There I am, alone, confused, listening to the nurses talk about Amish people who are using "studs" for sperm donors because they are becoming inbred (I wish I was joking). I laid there, one giant crocodile tear rolling down my cheek, trying not to start my pity party without any guests. As soon as they wheeled me into the room with J and he said, "So did she tell you?" I started bawling. I thought about the woman in pre-op who has this surgery every six months just to relieve the pain. I thought about all the things I was going to miss out on because I would be stuck in the bathroom. I thought WOE. IS. ME.
Now here is the most important part of a fantastic pity party....it has to end sometime. Right now, sure, I'm in a decent amount of discomfort and a little bit of pain, but a lot of sufferers of IC are disabled, so in comparison I'm doing cartwheels. I can wallow, stew and ruin the other parts of my life that are simply overflowing with awesome, or I can live the life I want, just to spite my bitchy bladder. It will probably get worse one day, but today is now and as major as the pity party was, it's time to move on with life. IC will just have to be a part of it.
The purpose of this blog is to vent whatever feelings I am having, good or bad, and to provide a forum for people like me. Today is the first day of my life with IC and I would love to get feedback, tips and tricks, venting and anything else from those with or without IC, urethral syndrome, prostatitis, etc. Thanks for reading!
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