Marysol
04-08-2006, 09:38 AM
Hi everyone!
I guess the official thing is to introduce myself. My name is Marysol, I'm in my mid-20's and I'm officially, as of Dec 30th, 2005... an IC patient... there the dreaded admission is out of the way. :)
I'm excited to have found this board, b/c I know noone with IC. I'm a humanitarian worker who spends about 6-8 months a year overseas, lots and lots of travel. I should add here, that IC is not my only health woe in life, about the same time I was diagnosed, I was also diagnosed with pre-diabetes/hypoglycemia. If there is anyone who has this aswell... wow, I would love to talk to you! I would take you out to coffee just to chat about it, but that's a no-no.
My story: I think I've had IC for years. I've always had a really acid diet, especially loving lemons/lemon juice on everything. But I've never had a UTI, Bladder infection, nothing...
Last fall, I was working in Africa. I noticed about 4 days of urinating alot! By day four, I couldn't go longer than 20 minutes without urinating. My team suggested I had a UTI and that I should drink cranberry juice. Cranberry juice being hard to come by in remote Africa, I never found it. I thank God for that now. BUt by day 5, I woke up feeling about as close to dying as I had ever felt.
I saw an American doctor who diagnosed me with Malaria and a severe kidney infection. I know... who gets both? So I recovered from that in Africa. Over the Holidays in the US, I had lots of follow up testing. I was still peeing alot, but not as much. The doctors were investigating it from the diabetic angle. I had a CT scan to rule things out. On the CT scan, a growth in my kidney was found. Concerned, I saw a uriologist, had an ultrasound, etc.
Getting to his office, he took a urine sample. He bombared me with questions. Then said, "Your kidney growth is nothing to worry about, however we found white blood cells in your urine and what you're describing concerns me more." He scheduled me for a distention & scope, under anestethia. It all happened so fast, I thought it was just to "rule something out".
I woke up from anesthesia in so much pain, I couldn't pee except for blood. I looked at my father who came with me and asked how everything went. He said, "The doctor will talk to you tomorrow when you're more awake." By the look in his face, I knew something was very wrong. The next day I was diagnosed, the pain that followed after those days was indescribable.
I was of course in complete shock. I think b/c I had already been through so much, I didn't see this coming... a whole new disease introduced in my life. You all know the feeling the days after... the shock, the feeling you can't eat anything, the overwhelming feelings, needing to make decisions, crying, endlessly crying, . I never want to re-live those days.
At this point: For 3 months, I was doing well.. recouping in the US, the doctor felt I was even going into spontaneous remission, I was down to an average of 8 times a day w/ very little pain... granted I was eating next to nothing. THe combination of this with a diabetic diet (no sugar, low carb) is overwhelming and I'm glad to read I'm not the only one who feels like crying when thinking of what to eat.
I'm back in the feild now, for a month so far... in South Africa (so not as remote as other places but still a major varible in dealing with this monster, but I'm not ready to abandon the work & calling I love). I'm experiencing a bit more pain, more urgency, and I'm urinating about 13 times a day. Now I'm wrestling with the thought of getting DMSO here & all that entails. Elmiron does work for me b/c being hypoglycemic & taking meds on an empty stomach don't work well together. I'm a bit scared at this point: scared of making descions, still scared of the daunting task of managing this for a lifetime & traveling. It's been 3 months, an yet I still am in the denial/shock/grief/fear/confusion/I can-do-this/the cycle repeats stage.
Thank you for letting me unload. I hope to get know you guys better & I'd love to hear your thoughts, opinions, stories, and advice.
Marysol
I guess the official thing is to introduce myself. My name is Marysol, I'm in my mid-20's and I'm officially, as of Dec 30th, 2005... an IC patient... there the dreaded admission is out of the way. :)
I'm excited to have found this board, b/c I know noone with IC. I'm a humanitarian worker who spends about 6-8 months a year overseas, lots and lots of travel. I should add here, that IC is not my only health woe in life, about the same time I was diagnosed, I was also diagnosed with pre-diabetes/hypoglycemia. If there is anyone who has this aswell... wow, I would love to talk to you! I would take you out to coffee just to chat about it, but that's a no-no.
My story: I think I've had IC for years. I've always had a really acid diet, especially loving lemons/lemon juice on everything. But I've never had a UTI, Bladder infection, nothing...
Last fall, I was working in Africa. I noticed about 4 days of urinating alot! By day four, I couldn't go longer than 20 minutes without urinating. My team suggested I had a UTI and that I should drink cranberry juice. Cranberry juice being hard to come by in remote Africa, I never found it. I thank God for that now. BUt by day 5, I woke up feeling about as close to dying as I had ever felt.
I saw an American doctor who diagnosed me with Malaria and a severe kidney infection. I know... who gets both? So I recovered from that in Africa. Over the Holidays in the US, I had lots of follow up testing. I was still peeing alot, but not as much. The doctors were investigating it from the diabetic angle. I had a CT scan to rule things out. On the CT scan, a growth in my kidney was found. Concerned, I saw a uriologist, had an ultrasound, etc.
Getting to his office, he took a urine sample. He bombared me with questions. Then said, "Your kidney growth is nothing to worry about, however we found white blood cells in your urine and what you're describing concerns me more." He scheduled me for a distention & scope, under anestethia. It all happened so fast, I thought it was just to "rule something out".
I woke up from anesthesia in so much pain, I couldn't pee except for blood. I looked at my father who came with me and asked how everything went. He said, "The doctor will talk to you tomorrow when you're more awake." By the look in his face, I knew something was very wrong. The next day I was diagnosed, the pain that followed after those days was indescribable.
I was of course in complete shock. I think b/c I had already been through so much, I didn't see this coming... a whole new disease introduced in my life. You all know the feeling the days after... the shock, the feeling you can't eat anything, the overwhelming feelings, needing to make decisions, crying, endlessly crying, . I never want to re-live those days.
At this point: For 3 months, I was doing well.. recouping in the US, the doctor felt I was even going into spontaneous remission, I was down to an average of 8 times a day w/ very little pain... granted I was eating next to nothing. THe combination of this with a diabetic diet (no sugar, low carb) is overwhelming and I'm glad to read I'm not the only one who feels like crying when thinking of what to eat.
I'm back in the feild now, for a month so far... in South Africa (so not as remote as other places but still a major varible in dealing with this monster, but I'm not ready to abandon the work & calling I love). I'm experiencing a bit more pain, more urgency, and I'm urinating about 13 times a day. Now I'm wrestling with the thought of getting DMSO here & all that entails. Elmiron does work for me b/c being hypoglycemic & taking meds on an empty stomach don't work well together. I'm a bit scared at this point: scared of making descions, still scared of the daunting task of managing this for a lifetime & traveling. It's been 3 months, an yet I still am in the denial/shock/grief/fear/confusion/I can-do-this/the cycle repeats stage.
Thank you for letting me unload. I hope to get know you guys better & I'd love to hear your thoughts, opinions, stories, and advice.
Marysol