Had a massive flare today as the air grew chill once again. Thankfully I have the weekend off to deal with it.. or do I? College students don't have days off because we always have to read or some such on days without class. And since I'm the proclaimed "house bitch" (a term of humor used amongst me and my friends for whoever doesn't work and does the house work) that adds on.
There's another blog post I need to write about the doctor is always right mentality.. have some stories.
Thursday, January 26, 2012
Sunday, January 22, 2012
House etiquette should be excused or not taken so harshly on IC patients
Dear mother and world. When you have IC you will jump in and out of the tub to the toilet. This will leave water everywhere. As we are nervous about time spent out of the tub or heating pad we do a rush, bad job of wiping up the puddles. I do slide a towel on the way out, but yes I may miss places. So sorry to be an inconvenience. Perhaps you could shoot my bladder so we won't have to worry about this anymore? Be sure to do enough damage so they have to rip the nerves out too though.
Survive Chronic Pain
A wonderful read for chronic pain treatments: http://pain-topics.org/pdf/IntractablePainSurvival.pdf
Reminds me of my doctor visit earlier this week..
Which is exactly what she was trying to make me do after coming to terms with it and trying to plan around it. She said no, go live a "normal life" and don't waste my "talents."
My talent is writing. I am doing my talent now.
I tell people I'm very sick, but they don't understand, not even my regular doctors, and this is why you must find the right doctor at any costs. Thankfully I don't have to take any advice from my GP about my IC since she doesn't specialize in it. I get she was trying to make me feel better, but in fact it just made me feel worse -- useless. It doesn't help.
This is an important point for ICers. The longer you let yourself stay in pain, the more the nerves will trigger pain and could cause symptoms to progress. Yet, try telling your mother/boss that you can't do such-and-such right now because you have to sit on your heating pad for a bit and see how understanding they are.
Reminds me of my doctor visit earlier this week..
"It sounds so obvious and simple, but the hardest thing an IP patient to do is, down deep in your mind,
heart and soul, stop denying that you have a serious, life-shortening, medical condition that will not go
away."
Which is exactly what she was trying to make me do after coming to terms with it and trying to plan around it. She said no, go live a "normal life" and don't waste my "talents."
My talent is writing. I am doing my talent now.
I tell people I'm very sick, but they don't understand, not even my regular doctors, and this is why you must find the right doctor at any costs. Thankfully I don't have to take any advice from my GP about my IC since she doesn't specialize in it. I get she was trying to make me feel better, but in fact it just made me feel worse -- useless. It doesn't help.
"Your attitude about pain must change. Increased pain hurts you. When the pain flares, your pulse rate
increases, and hormones stored in your adrenal gland flood your system causing further body deterioration,
rusting, and aging.
Therefore, you MUST do whatever it takes to suppress your pain and prevent flare-ups. You simply
want to keep pain as far away and as controlled as possible. Never try to "work through it" or "tough it out" or believe that character and will power will solve your problem."
This is an important point for ICers. The longer you let yourself stay in pain, the more the nerves will trigger pain and could cause symptoms to progress. Yet, try telling your mother/boss that you can't do such-and-such right now because you have to sit on your heating pad for a bit and see how understanding they are.
Friday, January 20, 2012
I want to eat this for nutrition, but all these good vitamins might hurt me
There are two vitamins ICers fear the most -- Potassium and Vitamin C. It makes us hurt a lot. In fact, the old medieval torture method of diagnosis done about 5 years ago was to force potassium into the bladder. If you screamed, you had IC. I'd scream regardless due to the catheter, and such is why I held off my diagnosis until last year when the guidelines changed.
Anyway, I bought some wheat germ. All natural, no preservatives. It's meant to be added to food, but I like the taste so use it as cereal, but then I noticed it say that it contains more potassium per ounce than any fruit. Now I'm too afraid to eat it.
On a minor, unrelated note I found out a little about my Dad's side of the family. We don't talk much. We don't mesh too well. Evidently they're somehow related to John Wilkes Booth (the guy that killed Abraham Lincoln; which is funny since I've been dating a black guy for the past 8 years), and some murderer is my second cousin. Uh.. yeah.
As for where they came from, my Pawpaw was Cajun and "hillbilly", the family has no idea where the "Goodwins" actually come from and there's only 4 of us left including me. My Mawmaw was Cajun and Irish. My Mawmaw's side keeps a nice family tree going and its fun to look at. They fought for the Confederates.
There's no mention of IC from them except that my Mawmaw had a lot of bladder problems, but this is also a lady who drank 2 pots of coffee a day. My grandmother on my mom's side was diagnosed with IC, leading me to believe it skips a generation. Past that? I don't know how many ancestors had IC. And when you consider there's a 10% chance or something that your not really related to who you think you are due to adultery and all that.. going back further may not help the research into IC as a genetic disease.
Anyway, I bought some wheat germ. All natural, no preservatives. It's meant to be added to food, but I like the taste so use it as cereal, but then I noticed it say that it contains more potassium per ounce than any fruit. Now I'm too afraid to eat it.
On a minor, unrelated note I found out a little about my Dad's side of the family. We don't talk much. We don't mesh too well. Evidently they're somehow related to John Wilkes Booth (the guy that killed Abraham Lincoln; which is funny since I've been dating a black guy for the past 8 years), and some murderer is my second cousin. Uh.. yeah.
As for where they came from, my Pawpaw was Cajun and "hillbilly", the family has no idea where the "Goodwins" actually come from and there's only 4 of us left including me. My Mawmaw was Cajun and Irish. My Mawmaw's side keeps a nice family tree going and its fun to look at. They fought for the Confederates.
There's no mention of IC from them except that my Mawmaw had a lot of bladder problems, but this is also a lady who drank 2 pots of coffee a day. My grandmother on my mom's side was diagnosed with IC, leading me to believe it skips a generation. Past that? I don't know how many ancestors had IC. And when you consider there's a 10% chance or something that your not really related to who you think you are due to adultery and all that.. going back further may not help the research into IC as a genetic disease.
New Definition of Rape
New definition of rape: http://blogs.usdoj.gov/blog/archives/1801
Wouldn't seen this if Anonymous hadn't been fing with the site earlier due to the SOPA drama. Sadly its back up, but this is a pleasant find.
The implications mean that women who felt violated during childbirth can legitimately call their experience birth rape without other women attacking them. We're all on the same team here.
If only that had the word "informed" before consent; that'd force doctors to respect our bodies, emotions, and preferences far more than what they do now.
Don't know what birth rape is, or how women could even remotely call birth a form of rape? It all has to do with how they're treated by their ever so compassionate doctors.
This sums up and gives personal stories: http://birthraped.wordpress.com/
Now maybe they can get justice. I hope ICers who've been treated like crap can have justice too. Sometimes doctors will just stick catheters up us without warning or asking.
Notice how the definition no longer exclusively includes penetration by a sexual organ or the intent of the perpetrator. If you felt violated, then you were violated.
This can bring me all the way back to the argument against enforced pap smears, but I think you guys are smart enough to connect those two things. I don't really give consent to the exam, I am coerced.
“The penetration, no matter how slight, of the vagina or anus with any body part or object, or oral penetration by a sex organ of another person, without the consent of the victim.”
Wouldn't seen this if Anonymous hadn't been fing with the site earlier due to the SOPA drama. Sadly its back up, but this is a pleasant find.
The implications mean that women who felt violated during childbirth can legitimately call their experience birth rape without other women attacking them. We're all on the same team here.
If only that had the word "informed" before consent; that'd force doctors to respect our bodies, emotions, and preferences far more than what they do now.
Don't know what birth rape is, or how women could even remotely call birth a form of rape? It all has to do with how they're treated by their ever so compassionate doctors.
This sums up and gives personal stories: http://birthraped.wordpress.com/
Now maybe they can get justice. I hope ICers who've been treated like crap can have justice too. Sometimes doctors will just stick catheters up us without warning or asking.
Notice how the definition no longer exclusively includes penetration by a sexual organ or the intent of the perpetrator. If you felt violated, then you were violated.
This can bring me all the way back to the argument against enforced pap smears, but I think you guys are smart enough to connect those two things. I don't really give consent to the exam, I am coerced.
Thursday, January 19, 2012
Doctors who don't listen
My last post was a rant about the pap smear I was forced to go through, just like everyone else, to receive BC. Now I'll get to the IC part of the visit. Since my pants were off she saw those deep, purple, vein lines we cause when we burn ourselves on out heating pads. She freaked out, told me to stop. I told her that I hurt too much to stop.
She berated me. I told her, "It HURTS."
She thought for a moment and prescribed an anti-anxiety med and requested to see my vitamin D levels since I was "pale" and it can effect pains.
Then she told me I need to get out more, and not let this disease control my life. I replied again, "but it HURTS. I can't do anything like this."
This is where she stopped listening and urged me to not shut myself away in my room with a heating pad. Instead I supposed I should go out until my pain gets so bad I'm in tears and the spasms are out of control. I leave my house when I feel safe. Most days during the winter I don't feel safe.
I emailed my Uro and asked if there was actually any damage that could be done from the heating bad and she said that all her patients at the same markings and it was normal for us.
Plan? Cover it up with a cool tattoo. I mean, if I ever go into remission. Until then I don't need any needles.
So for the past.. oh.. 4 days? I've been saying very loudly, "NOW I SHALL GO EAT THIS CEREAL, WHICH AS VITAMIN D, AS I GO BURN MYSELF ON THIS HEATING PAD." I think my boyfriend is tired of hearing it.
She berated me. I told her, "It HURTS."
She thought for a moment and prescribed an anti-anxiety med and requested to see my vitamin D levels since I was "pale" and it can effect pains.
Then she told me I need to get out more, and not let this disease control my life. I replied again, "but it HURTS. I can't do anything like this."
This is where she stopped listening and urged me to not shut myself away in my room with a heating pad. Instead I supposed I should go out until my pain gets so bad I'm in tears and the spasms are out of control. I leave my house when I feel safe. Most days during the winter I don't feel safe.
I emailed my Uro and asked if there was actually any damage that could be done from the heating bad and she said that all her patients at the same markings and it was normal for us.
Plan? Cover it up with a cool tattoo. I mean, if I ever go into remission. Until then I don't need any needles.
So for the past.. oh.. 4 days? I've been saying very loudly, "NOW I SHALL GO EAT THIS CEREAL, WHICH AS VITAMIN D, AS I GO BURN MYSELF ON THIS HEATING PAD." I think my boyfriend is tired of hearing it.
Holding back Birth Control until getting a pap smear is not informed consent
I had my annual exam this week. I call it the "rape exam" as I'm forced to do it to receive birth control which helps my bladder pain and also to hold a healthy relationship. It reminds me of the movie Brave Heart when you got married the mayor or whatever had first rights to your new wife. In order for me to be together with my boyfriend of 7 years and sole provider of monetary support I have to deal with this every year even though I do not consent to the reasoning behind it and that no other country except us, Canada, and Australia does this. Planned Parenthood is too far away for me to do the HOPE program. People in the U.K. gawk when they hear how women are treated over here in regards to birth control.
One of my friends got pregnant trying to avoid the exam while I ordered my pills online, much to the horror of all my other "friends" who I am no longer close to due to their betrayal of my (correct) feelings.
http://std.about.com/u/ua/stdsinthemedia/papocpua.htm
http://www.epigee.org/guide/medfaq.html
http://www.uhs.umich.edu/papsmears
http://feministsforchoice.com/birth-control-held-hostage.htm
http://feministsforchoice.com/pap-smears-save-lives.htm
http://www.aafp.org/online/en/home/clinical/exam/cervicalcancer.html
So much conflicting information. The last one even calls people like me "silly." I have IC. I know to do my own research, advocate for myself, and how to make educated choices for the autonomy of my body. No physician I have been to has taken my sexual history seriously. I say I'm still with my boyfriend from high school, we were both virgins, and we have never had that form of cancer in my family. They ignore me and force me in the stirrups. Its either that or I lose my relationship and the relief it brings for my IC.
Even if a result came back abnormal I wouldn't seek "treatment" as the body usually wins out. If I had two abnormal results then perhaps I would, but, as an IC patient, anything down there hurts.
My favorite quote comes from a comment from feministsforchocie:
Indeed, I am refused INFORMED consent. I am informed, I just am not allowed to make a decision regardless of my education. The test is from prehistoric times, and many women are now speaking about against it. It SHOULD be a choice, not mandatory.
I think men should be required to have a HPV test before they can receive Viagra.
But yes, (GASP) all that is medically necessary is a blood pressure check for birth control. There is no rule saying you must have a pap for the pill, but unfortunately the medical community allows doctors to keep giving women false information. These doctors believe it themselves.
Doctors should be allowed to recommend it, but never hold it and my relationship hostage.
They even screen women without a cervix.
Some sites say you need one every year, some say every two years, and I've heard every five years. No one is out there to give a definite answer. Its like IC. Its also sad that I'm looking for .gov info, but all the top results are BLOGS. I highly encourage you to view Dr. Sherman's blog on my blog roll list to the right.
My doctor told me there's no way out of getting a pap for birth control. I knew better. I knew I could get it from Planned Parenthood, I could get it from the internet, or I could go to Mexico because its sold OTC.
http://www.acog.org/~/media/For%20Patients/faq150.ashx
I really hate the phrasing here. "You may have this done to you," rather than "Your doctor may suggest this be done, but its your choice." This sort of phrasing is what sent me into five years of panic attacks. I didn't have my first pap until 22 because I was in so much pain from IC I just didn't care anymore. Reading the website causes alone causes me emotional pain due to my fears and over protectiveness of my body brought on my an overabundance of doctor exams and procedures done to me as a child. Reading an article like this as a teen really makes you feel helpless.
Yet the guidelines have changed, and this blogger complains about it: http://msmagazine.com/blog/blog/2010/05/13/to-pap-smear-or-not-to-smear-thats-the-question/
Funny thing is.. the links to the changes are gone now! Like I said, you can't find information to inform yourself anywhere except through blogs, which is sickening.
Wikipedia is the only one that mentions the differences between nations: http://en.wikipedia.org/wiki/Pap_test
I read one story about a Korean girl who married an American and when she came here she was horrified by the requirement to have a pap done to receive BC, so every year she returns home to get her prescription.
In the UK these are the guidelines: http://cancerhelp.cancerresearchuk.org/type/cervical-cancer/about/cervical-cancer-screening
Every 5 years. I'd be okay with that, if you know, I was in the risk group. But being in a monogamous relationship since high school and no family history of it makes it sound like a useless, humiliating test.
Yet, the doctors don't listen. They don't want informed patients. Perhaps, following the guidelines set by the UK, I'd be a lot less stressed around doctors.
http://www.owningpink.com/2009/11/20/new-pap-smear-guidelines-why-the-holistic-health-of-women-is-in-jeopardy
OH boy more conflicting information! The only important thing I can see out of ANY OF THIS is to get a pap smear when you feel you need one. Yet, the doctors won't listen.
A lawsuit can be made, but, as I like this doctor even if she's been corrupted by the evil bi*ch who left me in a room crying and softly rocking due to my anxieties over the pap because I demanded to speak to her rather than the male medical student and she evidently forgot all about me in there, I won't shove my weight around. She believed me when I told her I had IC. She gave me pain relief from it while I worked my courage to find the right IC doctor for me. She holds my loyalty for that, but I desperately wish she as well as other gynecological providers would tell their patients EVERYTHING including risks and pros and cons depend on each INDIVIDUAL as we do not all share the same experiences or sex lives.
One friend who was molested as a child held hers off until 30 but her doctor understood. Is the only way to gain bodily autonomy to lie? She wasn't lying, but for the rest of us? I wasn't raped or molested, but I was violated "down there" by a male doctor when I was five. I say violated because I wanted a female since "boys aren't allowed there", my mom said nothing, she later confessed this was because decades ago when she spoke out her doctors screamed at her.
What have we done to ourselves, women?
One of my friends got pregnant trying to avoid the exam while I ordered my pills online, much to the horror of all my other "friends" who I am no longer close to due to their betrayal of my (correct) feelings.
http://std.about.com/u/ua/stdsinthemedia/papocpua.htm
http://www.epigee.org/guide/medfaq.html
http://www.uhs.umich.edu/papsmears
http://feministsforchoice.com/birth-control-held-hostage.htm
http://feministsforchoice.com/pap-smears-save-lives.htm
http://www.aafp.org/online/en/home/clinical/exam/cervicalcancer.html
So much conflicting information. The last one even calls people like me "silly." I have IC. I know to do my own research, advocate for myself, and how to make educated choices for the autonomy of my body. No physician I have been to has taken my sexual history seriously. I say I'm still with my boyfriend from high school, we were both virgins, and we have never had that form of cancer in my family. They ignore me and force me in the stirrups. Its either that or I lose my relationship and the relief it brings for my IC.
Even if a result came back abnormal I wouldn't seek "treatment" as the body usually wins out. If I had two abnormal results then perhaps I would, but, as an IC patient, anything down there hurts.
My favorite quote comes from a comment from feministsforchocie:
To make an informed decision and truly have a choice one must have all of the facts. I absolutely support the idea that women and men see their doctor at regular intervals and discuss their health openly and honestly, which includes doctors informing women of the high false positive rate of pap smears, letting women know that a pelvic exam is not necessarily required every year, and instead of having a blanket requirement that all women need yearly pap and pelvic exams, doctors should customize the yearly exam to fit the needs of each individual. How many more women would go see the gyno more often if they knew that they would only be subjected to testing that was necessary for them personally?
What bothers me the most is the idea that women must be required to see the doctor because they cannot be trusted to take care of their health themselves. The attitude is condescending and disrespectful. While screening for disease is beneficial, it is a choice and women should be trusted to make the decision for themselves.
Indeed, I am refused INFORMED consent. I am informed, I just am not allowed to make a decision regardless of my education. The test is from prehistoric times, and many women are now speaking about against it. It SHOULD be a choice, not mandatory.
I think men should be required to have a HPV test before they can receive Viagra.
But yes, (GASP) all that is medically necessary is a blood pressure check for birth control. There is no rule saying you must have a pap for the pill, but unfortunately the medical community allows doctors to keep giving women false information. These doctors believe it themselves.
Doctors should be allowed to recommend it, but never hold it and my relationship hostage.
They even screen women without a cervix.
Some sites say you need one every year, some say every two years, and I've heard every five years. No one is out there to give a definite answer. Its like IC. Its also sad that I'm looking for .gov info, but all the top results are BLOGS. I highly encourage you to view Dr. Sherman's blog on my blog roll list to the right.
My doctor told me there's no way out of getting a pap for birth control. I knew better. I knew I could get it from Planned Parenthood, I could get it from the internet, or I could go to Mexico because its sold OTC.
http://www.acog.org/~/media/For%20Patients/faq150.ashx
I really hate the phrasing here. "You may have this done to you," rather than "Your doctor may suggest this be done, but its your choice." This sort of phrasing is what sent me into five years of panic attacks. I didn't have my first pap until 22 because I was in so much pain from IC I just didn't care anymore. Reading the website causes alone causes me emotional pain due to my fears and over protectiveness of my body brought on my an overabundance of doctor exams and procedures done to me as a child. Reading an article like this as a teen really makes you feel helpless.
Yet the guidelines have changed, and this blogger complains about it: http://msmagazine.com/blog/blog/2010/05/13/to-pap-smear-or-not-to-smear-thats-the-question/
Funny thing is.. the links to the changes are gone now! Like I said, you can't find information to inform yourself anywhere except through blogs, which is sickening.
Wikipedia is the only one that mentions the differences between nations: http://en.wikipedia.org/wiki/Pap_test
I read one story about a Korean girl who married an American and when she came here she was horrified by the requirement to have a pap done to receive BC, so every year she returns home to get her prescription.
In the UK these are the guidelines: http://cancerhelp.cancerresearchuk.org/type/cervical-cancer/about/cervical-cancer-screening
Every 5 years. I'd be okay with that, if you know, I was in the risk group. But being in a monogamous relationship since high school and no family history of it makes it sound like a useless, humiliating test.
Yet, the doctors don't listen. They don't want informed patients. Perhaps, following the guidelines set by the UK, I'd be a lot less stressed around doctors.
http://www.owningpink.com/2009/11/20/new-pap-smear-guidelines-why-the-holistic-health-of-women-is-in-jeopardy
OH boy more conflicting information! The only important thing I can see out of ANY OF THIS is to get a pap smear when you feel you need one. Yet, the doctors won't listen.
A lawsuit can be made, but, as I like this doctor even if she's been corrupted by the evil bi*ch who left me in a room crying and softly rocking due to my anxieties over the pap because I demanded to speak to her rather than the male medical student and she evidently forgot all about me in there, I won't shove my weight around. She believed me when I told her I had IC. She gave me pain relief from it while I worked my courage to find the right IC doctor for me. She holds my loyalty for that, but I desperately wish she as well as other gynecological providers would tell their patients EVERYTHING including risks and pros and cons depend on each INDIVIDUAL as we do not all share the same experiences or sex lives.
One friend who was molested as a child held hers off until 30 but her doctor understood. Is the only way to gain bodily autonomy to lie? She wasn't lying, but for the rest of us? I wasn't raped or molested, but I was violated "down there" by a male doctor when I was five. I say violated because I wanted a female since "boys aren't allowed there", my mom said nothing, she later confessed this was because decades ago when she spoke out her doctors screamed at her.
What have we done to ourselves, women?
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