Burning isn't a usual part of my IC, but with the weather its started to constantly burn and when I move the entire thing spasms. I makes me not want to stand. No research has been done on weather and IC, but it really needs to be done. A lot of ICers have extra problems during the cold months.
This would be the thing keeping me from getting a job. My normal pain can usually be ocontrolled, but despite taking valium, oxybutin, and soma it only help slightly. I need to move to the equator or something.. though my cousin said Los Angeles never gets cold or hot.. But like he said, cost of living there is insane.
So I remain tethered to my heating pad. My Grandmother's burial was today and thankfully I made it there during my 4 hour safe period. Look at a few of the grave, saw quite a bit of WWII vets who died in the 70s so they survived the war, but found one that died in '44... so.. he didn't live. There was one Vietnam one who died in the 60s, so I assume he didn't survive that war.. Saddest one was a family plot. Me and my nephew look confused at the graves, because all there was was a line of cement with markers over there. Said nephew assumed we were standing on the bodies when when I looked at their birth/death dates it turns out each one never lived past a year so their bodies fit under the grave markers.
Then I learned through looking at my grandmother's family plot that my pawpaw, her husband, had a first wife and an adopted son, both dead. The son died at 7 years old. mother said from Leukemia. Wife died a month after, mom said it was a blood clot during surgery. I don't understand how that man could keep going after losing his family within two months.
Tuesday, November 29, 2011
Sunday, November 27, 2011
True
“In medical care, dignity is the first casualty.” (Kussin, unknown American physician)
Mine was lost at 5 when being forced to have a male doctor examine my privates despite me screaming no, that I wanted a female doctor. Neither him or my mom cared, ranting the "We've seen so many" line, but that did not console me and I fought, and fought hard until I was captured, forced down and touched with covered my vaginal area with burning cream, assuming I had some sort of yeast infection when in fact it was the very first hint of IC.
I remember it. That means it was traumatic for me. Children REALLY need parental advocacy.. this incident has stuck with me for a long time.
Mine was lost at 5 when being forced to have a male doctor examine my privates despite me screaming no, that I wanted a female doctor. Neither him or my mom cared, ranting the "We've seen so many" line, but that did not console me and I fought, and fought hard until I was captured, forced down and touched with covered my vaginal area with burning cream, assuming I had some sort of yeast infection when in fact it was the very first hint of IC.
I remember it. That means it was traumatic for me. Children REALLY need parental advocacy.. this incident has stuck with me for a long time.
The Winter Flare
I don't know how much the temperature dropped. All I know is that last night things were warm enough to have the air conditioner on for awhile. I wake up and notice my boyfriend has out the heat on full blast, and this is a guy who finds 70 too hot.
I do my daily chores and find it it feels kinda chilly. Usually I get a 4 hour break from pain right after waking up. Today wasn't like that. Pain and burning from the start, I took all pain killers and my eyes are terribly dilated but I still hurt.
My Grandmother just died. Original plans was wake on tomorrow, which I could attend. Now they've moved everything to Tuesday. I have school on Tuesday. The two events happen at different times, but I'm flaring and I only have a 4 hour break. I must choose. Usually I'd pick the funeral, but it is the week before finals where teachers tend to give study guides to the "good" students who came to class. I need that guide. I'll email her and ask for notes and everything.
If that fails then I get to look like a worthless, selfish member of the family because no one understand the type of pain this disease causes.
This related to the spoon theory (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/). I don't have enough spoons for both. I told my mom this and she got very mad and disappointed to the point of making me cry. I DON'T WANT TO BE LIKE THIS. I WANT TO BE HEALTHY. It's not my fault, but that's never the message conveyed from her.
I do my daily chores and find it it feels kinda chilly. Usually I get a 4 hour break from pain right after waking up. Today wasn't like that. Pain and burning from the start, I took all pain killers and my eyes are terribly dilated but I still hurt.
My Grandmother just died. Original plans was wake on tomorrow, which I could attend. Now they've moved everything to Tuesday. I have school on Tuesday. The two events happen at different times, but I'm flaring and I only have a 4 hour break. I must choose. Usually I'd pick the funeral, but it is the week before finals where teachers tend to give study guides to the "good" students who came to class. I need that guide. I'll email her and ask for notes and everything.
If that fails then I get to look like a worthless, selfish member of the family because no one understand the type of pain this disease causes.
This related to the spoon theory (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/). I don't have enough spoons for both. I told my mom this and she got very mad and disappointed to the point of making me cry. I DON'T WANT TO BE LIKE THIS. I WANT TO BE HEALTHY. It's not my fault, but that's never the message conveyed from her.
Friday, November 25, 2011
Have Frequency Problems But Want to Watch a Movie?
Rather you have IC or not, Frequency is a common problem. Not for me; my symptoms are pains and spasms, but for anyone with frequency and wanted to watch a movie at the theater this website tells you the dullest parts of the movie to leave at!
http://runpee.com/
http://runpee.com/
Winter is my enemy
During the warmer months I wake up with no pain. Now after first urination everything is sore and feels swollen then generally declines until its time to go to the bathroom again.. then if I haven't doped myself up enough it'll start spasming and I either:
1. Attach myself to a heating pad
2: Nuke my system medicine and go to sleep
I have one last final paper to write for school and that needs to be done in 3 hours before spasms set in. Tomorrow I'll have to start proof-reading everything. I'm not sure how I'm going to make it to school after this week with everything going crazy. I'll need all my meds and will have to find a driver.
1. Attach myself to a heating pad
2: Nuke my system medicine and go to sleep
I have one last final paper to write for school and that needs to be done in 3 hours before spasms set in. Tomorrow I'll have to start proof-reading everything. I'm not sure how I'm going to make it to school after this week with everything going crazy. I'll need all my meds and will have to find a driver.
Wednesday, November 23, 2011
Flare
Day before thanksgiving, flaring. Meds aren't working entirely. Took everything but soma and heating pad. Not eating well.
Monday, November 21, 2011
Update, patient rights, violations, PTSD in children after medical procedures
On my second pack of cyclosporine. The second blood test hurt a little because the lab had to use a vein that I wasn't focused on when putting the lidocaine on. Some was on it, but not the glob it needed. She's a nice lady and it was fast. Now I only need bloodwork done once a month.
November is usually my worst for pain. In Louisiana the weather changes drastically. It'll go from 80 to 30 back to 70 and so on, really messing with a lot of people
s chronic problems. My diabetic friend's pancreas started spasming bad which we also assume is the cause.
Nov. 15th of last year was when my huge IC flare hit and never went away. This is what lead to my heavy use of pain medications because before that I only needed some benedryl and the diet and I'm not sort what happened other than the weather completely destroyed me.
So far I haven't missed classes. This week is final paper week so I'm busy trying to get through them in case a really bad flare does hit.
I hope to God that this is the cyclosporine helping me and I will be able to finish school, only to take more webcourses so I can be a transcriber since it appears I will be too disabled for a regular job for a long time. What I really want is to teach, but that won't happen with IC.
Onto another subject: I have a great fear of doctors since my mom never advocated for me. She'd pick one place and stay with it regardless of my feelings. I was born with a lazy eye. First doctor tried glasses to strain my muscles to see if that worked, second used an eye patch to force me to use that eye, and finally they just did surgery. All it really did was make me look "normal" but my eye function is useless except for peripheral vision. It was a very painful and traumatic event for me. Everyone of them used dialation eyedrops which felt like acid to me. To this day I can't go to an eye doctor, or even have someone try to put on makeup around my eyes without me squeezing them shut. I can't have the glaucoma test, because my eyes close without my control.
Another incident was the foreshadowing of my IC. In kindergarden one day I used the potty and found I felt like I had to pee very badly even though I just peed but nothing would come out, so I went to my teacher crying and she called my mom. It was expected to be an UTI, but nothing showed so the doctor wanted a physical exam. The problem is that I am female, he was male, and I was always told it was okay for me to not let anyone touch my private places if I wasn't okay with it.
I wasn't okay with it. I wanted a female doctor. I cried and pleaded that I didn't want this scary man (who was also responsible for my vaccinations, making him all the more scary) to touch my private parts because they were private. Instead of getting a female, they held me down and he touched me all down there and put this nasty cream all over the place in case it was a yeast infection. It burned and didn't help my symptoms.
Thankfully I felt better after a few weeks and nothing happened until I was a bit older, old enough to NOT tell my mom about this since she never advocated for me. I used the azo pills and the pain would go away. It happened about once every 2 months after going to the bathroom, they were spasms but I didn't know. I just knew not to say too much or bad things would happen to me against my will.
I just know I'm very thankful that the full blown IC waited until I was an adult. The diagnostic methods back then were even more barbaric than they are now and there was no way I could have mentally handled a scope going up me without GA. I'm messed up as it is, but that would have blown me over the edge, and so I am for advocating kids right to their own preference for healthcare. No one doctor does one thing the same as others. Parents must shop around for their kids, otherwise PTSD will develop. The perfect doctor is out there for everyone, but most people don't care if a certain procedure would hurt a child way more than adult who actually consented to it. Forceful penetration of the urethra or vagina, even for medical reasons on an unwilling child is rape. There is just no other definition for it.
I am across this site and it pissed me off so much http://patientmodesty.org/modesty.aspx
Pretty much it shoes the abuse hospitals will put you through if you don't fight. There's nothing silly about a rape victim, or even just a very modest girl, refusing a man for a pelvic exam. Routine Pelvic exams in general sound like a sack of crap to me. As an IC patient, I need it done, but for girls just trying to get birth control it involves no patient consent because there is no choice. It's a carrot on a stick, and sickeningly most women are okay with this. "Better safe than sorry." It is, unless you have severe emotional issues towards such things. Only you know your sexual history and risks of cancer. Sometimes they even force virgins into it, which is humiliating and often painful, and akin to a first sexual experience if the hymen breaks except its not with someone you trust or love, just a cold sterile thing force into you to receive the pill so you won't get pregnant we you try to "re-lose" your virginity. Too bad someone else already had their fingers up you. Thankfully at the age of 16 I knew what was going to happen if I was placed on the pill for acne, especially since I was dating, but I was also still a virgin. My mom pressured the doctor into putting me on the pill and I flipped out to the point that he forced her out the room. Me and him decided that I shouldn't be on the pill. Story closed, and I for the first time in my life advocated my bodily autonomy.
A few days ago I came across a post of a mother who's 3 year old daughter needed a VCUG done. This is where they put in a catheter and fill it with idiodine so they can x-ray to see if there's kidney reflux. Problem is you have to be awake, because you have to piss all over yourself after the dye is put in so everyone in the room can stare at you while you pee yourself. Now imagine going through this as a 3 year old, with no pain killers except maybe lidocaine, which works okay with small needle procedures, but must painfully be injected into the urethra in the first place and won't stop the horrible sensation of the catheter ripping past the child's spincter because it is a CHILD. Children cannot follow the order to relax to let it pass through. Even I couldn't. The cath burns upon entering, causing clenching, and a child will fight it. I've read accounts of adults who had it done as children and they can't even get pap-smears anymore and would rather die than have someone touch that area again.. the same goes with the IC community. I myself was very close to suicide until I found the doctor who diagnosed based off symptoms rather than the scope, which, they will not put you out for.
It's truly disgusting how patients are treated, but so many give in and even berate others for "walking out".
Wiki on VCUG: http://en.wikipedia.org/wiki/Voiding_cystourethrogram
It's a very impersonal explanation and won't prepare the patient for the pain and humiliation that comes with it. Sadly most recipients are children. Children who are not given proper sedation and can't understand why this is happening to them and why their mothers won't save them.
----------------------------------
Updated 2018: There is now a community on Reddit for those of us with medical PTSD. It was a long time coming.. so few places to find support. Those of you who find this blog, please continue posting here and cross-post there for support. https://www.reddit.com/r/MedicalPTSD/
November is usually my worst for pain. In Louisiana the weather changes drastically. It'll go from 80 to 30 back to 70 and so on, really messing with a lot of people
s chronic problems. My diabetic friend's pancreas started spasming bad which we also assume is the cause.
Nov. 15th of last year was when my huge IC flare hit and never went away. This is what lead to my heavy use of pain medications because before that I only needed some benedryl and the diet and I'm not sort what happened other than the weather completely destroyed me.
So far I haven't missed classes. This week is final paper week so I'm busy trying to get through them in case a really bad flare does hit.
I hope to God that this is the cyclosporine helping me and I will be able to finish school, only to take more webcourses so I can be a transcriber since it appears I will be too disabled for a regular job for a long time. What I really want is to teach, but that won't happen with IC.
Onto another subject: I have a great fear of doctors since my mom never advocated for me. She'd pick one place and stay with it regardless of my feelings. I was born with a lazy eye. First doctor tried glasses to strain my muscles to see if that worked, second used an eye patch to force me to use that eye, and finally they just did surgery. All it really did was make me look "normal" but my eye function is useless except for peripheral vision. It was a very painful and traumatic event for me. Everyone of them used dialation eyedrops which felt like acid to me. To this day I can't go to an eye doctor, or even have someone try to put on makeup around my eyes without me squeezing them shut. I can't have the glaucoma test, because my eyes close without my control.
Another incident was the foreshadowing of my IC. In kindergarden one day I used the potty and found I felt like I had to pee very badly even though I just peed but nothing would come out, so I went to my teacher crying and she called my mom. It was expected to be an UTI, but nothing showed so the doctor wanted a physical exam. The problem is that I am female, he was male, and I was always told it was okay for me to not let anyone touch my private places if I wasn't okay with it.
I wasn't okay with it. I wanted a female doctor. I cried and pleaded that I didn't want this scary man (who was also responsible for my vaccinations, making him all the more scary) to touch my private parts because they were private. Instead of getting a female, they held me down and he touched me all down there and put this nasty cream all over the place in case it was a yeast infection. It burned and didn't help my symptoms.
Thankfully I felt better after a few weeks and nothing happened until I was a bit older, old enough to NOT tell my mom about this since she never advocated for me. I used the azo pills and the pain would go away. It happened about once every 2 months after going to the bathroom, they were spasms but I didn't know. I just knew not to say too much or bad things would happen to me against my will.
I just know I'm very thankful that the full blown IC waited until I was an adult. The diagnostic methods back then were even more barbaric than they are now and there was no way I could have mentally handled a scope going up me without GA. I'm messed up as it is, but that would have blown me over the edge, and so I am for advocating kids right to their own preference for healthcare. No one doctor does one thing the same as others. Parents must shop around for their kids, otherwise PTSD will develop. The perfect doctor is out there for everyone, but most people don't care if a certain procedure would hurt a child way more than adult who actually consented to it. Forceful penetration of the urethra or vagina, even for medical reasons on an unwilling child is rape. There is just no other definition for it.
I am across this site and it pissed me off so much http://patientmodesty.org/modesty.aspx
Pretty much it shoes the abuse hospitals will put you through if you don't fight. There's nothing silly about a rape victim, or even just a very modest girl, refusing a man for a pelvic exam. Routine Pelvic exams in general sound like a sack of crap to me. As an IC patient, I need it done, but for girls just trying to get birth control it involves no patient consent because there is no choice. It's a carrot on a stick, and sickeningly most women are okay with this. "Better safe than sorry." It is, unless you have severe emotional issues towards such things. Only you know your sexual history and risks of cancer. Sometimes they even force virgins into it, which is humiliating and often painful, and akin to a first sexual experience if the hymen breaks except its not with someone you trust or love, just a cold sterile thing force into you to receive the pill so you won't get pregnant we you try to "re-lose" your virginity. Too bad someone else already had their fingers up you. Thankfully at the age of 16 I knew what was going to happen if I was placed on the pill for acne, especially since I was dating, but I was also still a virgin. My mom pressured the doctor into putting me on the pill and I flipped out to the point that he forced her out the room. Me and him decided that I shouldn't be on the pill. Story closed, and I for the first time in my life advocated my bodily autonomy.
A few days ago I came across a post of a mother who's 3 year old daughter needed a VCUG done. This is where they put in a catheter and fill it with idiodine so they can x-ray to see if there's kidney reflux. Problem is you have to be awake, because you have to piss all over yourself after the dye is put in so everyone in the room can stare at you while you pee yourself. Now imagine going through this as a 3 year old, with no pain killers except maybe lidocaine, which works okay with small needle procedures, but must painfully be injected into the urethra in the first place and won't stop the horrible sensation of the catheter ripping past the child's spincter because it is a CHILD. Children cannot follow the order to relax to let it pass through. Even I couldn't. The cath burns upon entering, causing clenching, and a child will fight it. I've read accounts of adults who had it done as children and they can't even get pap-smears anymore and would rather die than have someone touch that area again.. the same goes with the IC community. I myself was very close to suicide until I found the doctor who diagnosed based off symptoms rather than the scope, which, they will not put you out for.
It's truly disgusting how patients are treated, but so many give in and even berate others for "walking out".
Wiki on VCUG: http://en.wikipedia.org/wiki/Voiding_cystourethrogram
It's a very impersonal explanation and won't prepare the patient for the pain and humiliation that comes with it. Sadly most recipients are children. Children who are not given proper sedation and can't understand why this is happening to them and why their mothers won't save them.
----------------------------------
Updated 2018: There is now a community on Reddit for those of us with medical PTSD. It was a long time coming.. so few places to find support. Those of you who find this blog, please continue posting here and cross-post there for support. https://www.reddit.com/r/MedicalPTSD/
Monday, November 14, 2011
meh
Not feeling great today. I wouldn't call it a flare, but I have the urge to urinate despite nothing being there and it especially gets worse if I move.. I have things to do so can't afford to tether myself to a heating pad all day.
Friday, November 11, 2011
Is it working?
I'm not feeling great at the moment, but I wouldn't say I'm flaring. In fact I'm surprised I haven't had to knock myself out yet. We had a sudden cold front and I went all day without going to the bathroom due to very bad timing and school. I expected horrible retribution by my bladder, but it never came.
Is the cyclosporine already working? I sure hope so. I like this "living life" thing and hope it sticks around.
Is the cyclosporine already working? I sure hope so. I like this "living life" thing and hope it sticks around.
Saturday, November 5, 2011
1st day
Yesterday was my first say taking the cyclosporine. Nothing bad has happened. I was expecting some nausea from it or something, but no, I don't feel any different.
Friday, November 4, 2011
I've done it
I've just taken my first dose of cyclosporine. It is a gel capsule that tastes like butt. You'd think a capsule at least wouldn't taste like butt, but oh well.
I'm a senior major with only 3 classes to go to graduate. I haven't been able to take the final on-campus courses I needed because of IC. If this can make the pain tolerable then I can graduate next semester.
My hopes and dreams is to continue on to get a master's in English and work as a student teacher during this time so I can know if teaching is the field I really want to go into. After that it's all up in the air. I could teach here, or go abroad like I've always wanted to. I have the motivation and confidence to make these these happen, but IC took it all away from me.
If this works life will be wonderful. If it doesn't, then I'll have to keep my head buried until a true cure comes out.
I'm a senior major with only 3 classes to go to graduate. I haven't been able to take the final on-campus courses I needed because of IC. If this can make the pain tolerable then I can graduate next semester.
My hopes and dreams is to continue on to get a master's in English and work as a student teacher during this time so I can know if teaching is the field I really want to go into. After that it's all up in the air. I could teach here, or go abroad like I've always wanted to. I have the motivation and confidence to make these these happen, but IC took it all away from me.
If this works life will be wonderful. If it doesn't, then I'll have to keep my head buried until a true cure comes out.
It begins
As I type I'm in a mild to moderate flare. I've taken valium, ditropan, and soma to try and stop the pain. It's made it bearable.
I just received the cyclosporine and I will start taking it tomorrow. One of the side effects happens to be cancer. This is some serious stuff. I have to have my blood pressure checked weekly and my blood checked monthly. I'm afraid of needles, but the initial blood draw was easy since my Dr. sent me some lidocaine to numb it before hand. I felt nothing more than a brush of a finger.
And so will this cyclosporine lessen my symptoms??? I sure hope so. I want to continue to graduate school and be a student teacher.. something impossible to do at the moment with my IC being as bad as it is.
I just received the cyclosporine and I will start taking it tomorrow. One of the side effects happens to be cancer. This is some serious stuff. I have to have my blood pressure checked weekly and my blood checked monthly. I'm afraid of needles, but the initial blood draw was easy since my Dr. sent me some lidocaine to numb it before hand. I felt nothing more than a brush of a finger.
And so will this cyclosporine lessen my symptoms??? I sure hope so. I want to continue to graduate school and be a student teacher.. something impossible to do at the moment with my IC being as bad as it is.
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