Jen27
10-15-2006, 08:21 PM
HEY EVERYONE! My name's Jen, I'm almost 23 and from the Chicago-area. I've been coming to these boards for over a year (since I was diagnosed) but didn't join until now. I won't bore ya'll with my story ins and outs because it's probably the same as yours, where the UA shows no bacteria, so they send it out for a culture, but still you give antibiotics in the mean time and there's no relief, etc etc. For as long as I can remember I've had bladder troubles/pain and yes, sometimes it was infection.
I really was overwhelmed in the beginning, with the strict diet, the pain, the meds and oh yeah THE PAIN! This was August 2005 and since the last week of August 2006 I've been feeling a little overwhelmed at times, but alas, there is hope.
I think the worst part (aside from the pain) is that so little is known about this disease. It is chronic and often times debilitating. It comes and goes and although you don't look sick, you feel like someone set fire to your "parts" and the bathroom is your 2nd bedroom. I've had to go to the ER (crappy URO...long story, deserves it's own post!!) and the docs have NO idea what IC is (the nurse just heard the CYSTITIS part and figured I was a lunatic with a UTI) So I have to explain it to them blah blah blah. I wish there was a way to educate, so now if I am in that situation, I am going to bring my IC SURVIVAL GUIDE...I vow it to myself!!!
In the past month and half of this HELLISH ORDEAL I have
1. Lost my job---thanks to IC pain
2. Had to drop out of school---thanks IC pain
3. Lost my mind (I really thought I did!!!!) :cussing:
4. Slowly realizing there is more to life than losing my job, etc.
5. I know all the bathrooms of every place in the Northwest Chicago suburbs---thanks IC! See, there is an upside :-)
So now, for the past month and a half, I'm under a new Doctor's care (the good uro, who I see tomorrow for a CMG) I lost my job; I had to drop out of school; and despite all the pain, there is an upside to all of this. There has to be.
Luckily, I am receiving unemployment (thank you tax payers :woohoo: ) which should carry me until I get this thing under control. It hasn't been this bad in a year, since I was first dx'd.
I take Urised whenver I need it, Darvocet (thank you, new Uro) whenever I need it and Atarax everynight which I believe has been my saving grace, cut down on my pain TREMENDOUSLY!!! Lately though, I've been having to take the urised and darvocet daily. I used to NOT like taking narcotics, such as darvocet, but even my uro said that the pain is like cancer pain and an advil isn't going to make it go away. He said it's not a "bad" drug; like oxycotin or anything; that puts my mind at ease.
Luckily, very few foods bother me and I just stay away from the ones that I do. Gatorade and Orange Juice kill me, for some reason. Right now, sex is the LAST thing on my mind...sorry to my bf but he understands, he's taken me in the ER once when my uro was being a jerk, again.
Long post yes, sorry. I have several months of pent up anger and as well as understanding and I can communicate with people who have it also.
If you haven't already, TRY ATARAX...Jill explained to me that it is an antihistimine and something with mast cells...look it up, I don't want to misinform...but I"m starting to feel les painful and less anxious.
When you've reached the bottom, there are only 2 places to go: UP or SIDEWAYS.
You've all been extremely amazing in my times of need, before I joined the sites and I would love to share and hear other people's thoughts on this disease!!
Bless you all!!!
JeN
I really was overwhelmed in the beginning, with the strict diet, the pain, the meds and oh yeah THE PAIN! This was August 2005 and since the last week of August 2006 I've been feeling a little overwhelmed at times, but alas, there is hope.
I think the worst part (aside from the pain) is that so little is known about this disease. It is chronic and often times debilitating. It comes and goes and although you don't look sick, you feel like someone set fire to your "parts" and the bathroom is your 2nd bedroom. I've had to go to the ER (crappy URO...long story, deserves it's own post!!) and the docs have NO idea what IC is (the nurse just heard the CYSTITIS part and figured I was a lunatic with a UTI) So I have to explain it to them blah blah blah. I wish there was a way to educate, so now if I am in that situation, I am going to bring my IC SURVIVAL GUIDE...I vow it to myself!!!
In the past month and half of this HELLISH ORDEAL I have
1. Lost my job---thanks to IC pain
2. Had to drop out of school---thanks IC pain
3. Lost my mind (I really thought I did!!!!) :cussing:
4. Slowly realizing there is more to life than losing my job, etc.
5. I know all the bathrooms of every place in the Northwest Chicago suburbs---thanks IC! See, there is an upside :-)
So now, for the past month and a half, I'm under a new Doctor's care (the good uro, who I see tomorrow for a CMG) I lost my job; I had to drop out of school; and despite all the pain, there is an upside to all of this. There has to be.
Luckily, I am receiving unemployment (thank you tax payers :woohoo: ) which should carry me until I get this thing under control. It hasn't been this bad in a year, since I was first dx'd.
I take Urised whenver I need it, Darvocet (thank you, new Uro) whenever I need it and Atarax everynight which I believe has been my saving grace, cut down on my pain TREMENDOUSLY!!! Lately though, I've been having to take the urised and darvocet daily. I used to NOT like taking narcotics, such as darvocet, but even my uro said that the pain is like cancer pain and an advil isn't going to make it go away. He said it's not a "bad" drug; like oxycotin or anything; that puts my mind at ease.
Luckily, very few foods bother me and I just stay away from the ones that I do. Gatorade and Orange Juice kill me, for some reason. Right now, sex is the LAST thing on my mind...sorry to my bf but he understands, he's taken me in the ER once when my uro was being a jerk, again.
Long post yes, sorry. I have several months of pent up anger and as well as understanding and I can communicate with people who have it also.
If you haven't already, TRY ATARAX...Jill explained to me that it is an antihistimine and something with mast cells...look it up, I don't want to misinform...but I"m starting to feel les painful and less anxious.
When you've reached the bottom, there are only 2 places to go: UP or SIDEWAYS.
You've all been extremely amazing in my times of need, before I joined the sites and I would love to share and hear other people's thoughts on this disease!!
Bless you all!!!
JeN