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?
Sunday, January 15, 2012
Sunday Morning -- No Plans Allowed
In pain.. first bathroom time of day and it triggered really bad spasms.. was going to try and WoW raid today, but I just can't be around people now or else I may say things I'll have to apologize for later.
This is IC. And is sucks. It ruins your plans. But I know I won't hurt all day. Even if that means I have to slightly take too many muscle relaxers, by night, I'm usually feeling okayish. Its just this thing changes symptoms every 4 hours. It's why I'm afraid to get a job. I don't know what my life will be like within the next 4 hours much less year! It doesn't seem like a cold front came in last night, and sure maybe I had some salt.. but I feel its more weather related anyway. And still no one studies this. Guess I'll write an e-mail to the ICA. You'd be surprised who you can get in contact with.. like Mr. Famous Literature Criticism guy we studied for a week, I found out he's still alive, and e-mail him questions not clarified in our books or databases and the dude is super nice, replies within a day, and gives me all his personal writings.
Sadly Oprah hasn't replied yet to the whole "Do a damn show on IC" thing, but I'll keep trying.
This is IC. And is sucks. It ruins your plans. But I know I won't hurt all day. Even if that means I have to slightly take too many muscle relaxers, by night, I'm usually feeling okayish. Its just this thing changes symptoms every 4 hours. It's why I'm afraid to get a job. I don't know what my life will be like within the next 4 hours much less year! It doesn't seem like a cold front came in last night, and sure maybe I had some salt.. but I feel its more weather related anyway. And still no one studies this. Guess I'll write an e-mail to the ICA. You'd be surprised who you can get in contact with.. like Mr. Famous Literature Criticism guy we studied for a week, I found out he's still alive, and e-mail him questions not clarified in our books or databases and the dude is super nice, replies within a day, and gives me all his personal writings.
Sadly Oprah hasn't replied yet to the whole "Do a damn show on IC" thing, but I'll keep trying.
Saturday, January 14, 2012
Professor Jackass
I'll start with saying I'm not sure if this guy is a jackass or not, as I only met him for maybe.. 10 minutes since I was late to class. First time I've had to wake up before 12 in a year, so my body needs some adjustment time (plus I ace everything anyway regardless of my attendance, I read more of the material than any other students).
He seemed nice when I talked to him about my IC and such, but he seemed in a hurry so I packed up and left.
Its his syllabus that worries me. If I miss more than three classes I get a WN. Some teachers won't even tell you this, let you go to their class for the entire year, do all the work, and then at the end say you were WN'd three months prior.
Well, my disability stops me from leaving my heating pad on bad days, and I don't think they'll let me go in with no pants and a heating pad tethered to my crotch. Just a hunch.
Even more worrisome is that he counts you as absent if you're ten minutes late. I'm usually always late. I'm sick. My bed time rituals are so ridiculous it deserves its own post, I was an insomniac even before IC, and I live an hour away.
I've never had a jackass for a professor before. One even said she'd never count me absent because I always did so well on my tests and she didn't want me to suffer if I was in pain, and just to keep up with homework and email it to her. Most of my professors were pretty awesome about it, ESPECIALLY the language professors. The one who runs the language lab at my college has my picture up on the wall! I have no idea why, but I guess she really liked this picture:
I'm not even a language major, just had to take some courses, but hit it off with them great. They're all laid back. In fact I still use the language lab as just a place to sit and recline if I have to wait on something or quickly download something to my laptop. They always welcome me happily and chat. Even though it was two years ago, they still remember I have IC and often check up on me when we cross paths.
My English teachers aren't quite as laid back, but are understanding and kind. I've never had an issue with missing too many days. They probably cut me a lot of slack, but like I said my GPA is a 3.56 and I always take part in discussions and even try to start some since the rest of the class always happen to be zombies.
Hopefully this guy isn't going to follow his syllabus to the letter with me. He'd be the only professor ever to punish me so. I'll be wary..
He seemed nice when I talked to him about my IC and such, but he seemed in a hurry so I packed up and left.
Its his syllabus that worries me. If I miss more than three classes I get a WN. Some teachers won't even tell you this, let you go to their class for the entire year, do all the work, and then at the end say you were WN'd three months prior.
Well, my disability stops me from leaving my heating pad on bad days, and I don't think they'll let me go in with no pants and a heating pad tethered to my crotch. Just a hunch.
Even more worrisome is that he counts you as absent if you're ten minutes late. I'm usually always late. I'm sick. My bed time rituals are so ridiculous it deserves its own post, I was an insomniac even before IC, and I live an hour away.
I've never had a jackass for a professor before. One even said she'd never count me absent because I always did so well on my tests and she didn't want me to suffer if I was in pain, and just to keep up with homework and email it to her. Most of my professors were pretty awesome about it, ESPECIALLY the language professors. The one who runs the language lab at my college has my picture up on the wall! I have no idea why, but I guess she really liked this picture:
I'm not even a language major, just had to take some courses, but hit it off with them great. They're all laid back. In fact I still use the language lab as just a place to sit and recline if I have to wait on something or quickly download something to my laptop. They always welcome me happily and chat. Even though it was two years ago, they still remember I have IC and often check up on me when we cross paths.
My English teachers aren't quite as laid back, but are understanding and kind. I've never had an issue with missing too many days. They probably cut me a lot of slack, but like I said my GPA is a 3.56 and I always take part in discussions and even try to start some since the rest of the class always happen to be zombies.
Hopefully this guy isn't going to follow his syllabus to the letter with me. He'd be the only professor ever to punish me so. I'll be wary..
This is IC and this is what it does to your mind and body.
This is something someone linked that had been written by me. So I figured I'd just put it here too.
This is a post written amidst a flare. I will be hateful, politically incorrect, and highly offensive with bad words. This is also a public post because it needs to be heard, or at least, what IC does to a person's mentality.
I hate everyone today. I had to go get blood drawn but had to be driven an hour there and an hour back to the lab. I didn't feel the needle. It went great. I was already in a flare. I've been in once for the past 2 days, but the meds I've been taking made it bearable and I could play games and distract myself. Walking and leave the house is a bad idea. But I had to today.
I brought heating pad with me. Ride there and ride back as okay, but we needed to go to walmart to pick up Kleenex and maybe something edible for me. I find that matching my usual walk fast pace just makes it worse, so I ask James to tiptoe with me as it's the only way I could do it. All the wheelchairs for taken -- by fat women. Fat fucks who, SURPRISE, riding in a wheel chair isn't going to fix that. And these women all seemed chipper. Well of course, they weren't sick. maybe walking just her because they were so fucking fat. Who knows. So I just brave it out.
I get to the cereal aisle and a spasm punches me in the gut. This type of pain is hard to describe. The simplest way is to say imagine the worst bladder infection you've ever had, but no medication will stop the pain. But I'll say it felt like I hadn't urinated for 24 hours beforehand, and this new spasm felt like my bladder was ripping apart. I told James I was out of there. I had to go back to the car, put on the heating pad, and lay down.
I blame it on the fat fucks. If I could have gotten a chair the jostling wouldn't have triggered this. I wish their leg/back pain would kill them, but it won't, so they'll just get fatter and keep using the chairs. This is why I want my own damn wheel chair. This season is destroying me like it always does. Will I graduate this year? I have no idea. If the IC behaves, yes, I will. if not then no, I have to waste yet another year on online courses and another year keeping me away from getting a job I can do online.
I hate all the healthy people. I hear this is common with cancer patients too. I hate them. I despise them and their first world problems that they complain about. I'd trade them.
Do you want to pray for me? Please do. Even though I despise organized religion of any kind, I'm not a scrooge about it. I prayed constantly last year. Deus ex machina didn't happen.
I'm hurting bad. I can't even play with James and it feels like I'm wasting his vacation. I went to bed early last night. I woke up early. It doesn't matter what time of day it is, it will hurt. Until some asshole finally decides to do research on temperature change and chronic illnesses I think we're all fucked. I know my other chronically ill friends are having a hard time this winter too. Something is happening, but no one cares to research it because it brings in no money.
This isn't an infection I don't think because last night I felt pretty normal. The morning/dayti flares are what are destroying me.
I'm taking Valium, soma, elimiron, utira-c, oxybutinin, and benedryl, and even with all this shit still I feel like my bladder is destroying itself.
Now factor in the only thing I can safely eat are mostly tasteless things. Plain rice, some wheat, and if I'm brave then mild cheddar cheese. So I sit watching these fat fucks stuff their mouths with McDonald's breakfast items (which I love and crave) and then watch them scoot on out with the customary Wal-mart scooters and I'm expected not to hate them.
I'm usually not a hateful person, not ever, I don't even hate Hitler, I just want to understand why he did what he did and say it was wrong but from that viewpoint (evidently his mother was impregnated by a rich Jewish guy she worked for, or so the school databases suggest with some evidence such as Hitler turning the graveyard his "dad" was buried in into an artillery range so that everything would be destroyed..) So no, I don't hate him. Not even him.
But now? Today? At this moment? I'm filled with it for everyone. Even those who didn't take the chairs. I suppose it comes with the "why me?" sentiment.
So what now? James won't and can't move to South America every winter. I can't work outside the home unless this goes into remission. And at 26 I am kicked off my step dad's insurance plan. That blood test that I have to do every month costs $140 by itself without insurance. Elmiron costs $500, and I won't even bother looking into the others unless I want to depress myself me. I don't think this thing will go into remission within 3 years.
So what do I do now? The worst part is NO ONE CAN SEE THIS. It is not visible. If I took the chair I'd be glared at. If I accepted my doctor's offer for a handicapped parking spot I'd be glared at. But right now I am handicapped, badly handicapped. No housework will be done today, and my mom won't let me forget.
If my bladder is removed it'll do nothing. It's the muscles triggering it. But they're connected to everything down there and can't be removed.
Will the Republicans pay for my medications? No. Will the Democrats? Maybe, but I'm not so hopeful. I can't get disability because I never had a chance to work because of this. I can get SSI, but when look at me and my age and depending on the day I can look pretty damn healthy I suspect I'll be denied repeatedly. Will my urologist vouch for me? Maybe. But she's already stuck her head out for me by giving me all these pills and I'd hate to put more work on her. In the end I may have to. I guess along with James, Chris, and my other chronically friends she is the only other person I don't hate right now.
So now what? Seriously. Tell me what you would do in this situation. I just want to get my degree and go for a masters. I would love the hell out of being a teacher student. But I can't. I'm crippled, but not crippled enough for the government to help me.
I'm cross posting this everywhere. THIS IS IC AND THIS IS WHAT IT DOES. THIS IS WHY I DON'T VISIT MY FAMILY. THIS IS WHY I CAN'T VISIT MY GRANDMOTHER IN THE HOSPITAL. THIS IS THE REASON MY BOYFRIEND MAY EVENTUALLY BREAK UP WITH ME (though he's been a trooper so far). You can all stop making me feel guilty. Perhaps it'll lessen my hate a little.
Alternative Vs Western
There's the "hippies" and then there's the "scientists." I think both are wrong about things and both are right about others.
When I first diagnosed myself with IC via research after my bladder infection pain never went away I was horrified to see the diagnostic process involved a scope, which is wider than a catheter, being slid into the hole where no things were meant to go, and all the while being forced to be awake and aware during it. The hydro-distension looked dangerous and even back on 07 some people were saying it didn't get them a diagnosis until they kept switching doctors.
If there's any doctors out there, can you please tell me why Propofol can't be used for cystoscopies? They use it for routine colonscopies. I'd pay the extra cash, even sell my car.
That aside, thank God the guidelines have changed and its no longer needed.
Back then, (just in '07) that's "how we do things around here," or so said everyone. I felt quite attacked my my beloved IC community of the Interstitial Cystitis Network because I explained my intense fear of doctors, but the badgered me to the point that I left the site. I was 19.
Without a diagnosis I couldn't get the only saving grace at the time, that being Elmiron. I looked all over the internet to try and find a way to get it online. Canadian pharmacies required a prescription as did everywhere else, however, you can get birth control online with no exam needed. This was also something I did to the avoid the "you must have a pap smear even if you only had one partner and you were both virgins."
So I hid. I hid all summer, crying in pain. The only thing I had was Quercetin, something sold to body builders at GMC and some other over the counter supplement unusually used by sufferers of arthritis.
I had no pain meds, but at least knew the diet. And yes, I wasn't "diagnosed" but I knew I had it. Things gradually got better. But not enough to not leave me in agony once school started again. All I had was over the counter azo to help the pain, and thankfully it did good. Slowly, my pain got better.. I suffered through classes.. but by November it was gone. Within 6 months it had gone into remission. Was it the herbs? Maybe. I can't say. But I felt so proud about defeating this disease all by myself.
Then in '09 it returned. I resumed hiding. It was worse this time. I couldn't get to school, or even leave my bed. I took online courses just to keep my scholarships but none was towards my degree. The herbs weren't working this time.. or at least not fast enough.
The a nurse practitioner suggested to me by a friend saved me. She had patients with IC and believe me when I told it that's what it probably was. She gave me a muscle relaxer, and it helped a ton. She still wanted me to go to a urologist, but I told her I was too terrified to even have a pap done. She took care of me for a year until I was ready to try a Urologist, and at this point, the guidelines had changed to diagnose based off symptoms. I was recommended to a female urologist. The very first visit she told me she only diagnosed through hydro distention or the scope, at which I protested, saying the guidelines had changed. The reply was "well, that's just how we do things around here."
I started crying, she gave me a hug, and said she'd give me time to think about it as she attended other patients. I talked with my boyfriend on what he thought was best, and he said he fully supported my decision to do what I felt what was best for my body. I didn't return to that Urologist.
Through the ICN I found one 3 hours away that did guest lectures and such so was more informed. She knew about the guidelines, and unlike the last uro, said that instills wouldn't help the type of symptoms I was having (which was the only thing the other uro suggested).
I got on Elmiron, a ton of pain pills, and as you know, cyclosporine. I'm doing FAR better than last year. I don't think the Elmiron did much as I think my bladder is repaired, but I'm stuck with muscle spasms and false nerve triggers. That's just my hunch since the Elmiron hasn't made me "normal". I may discontinue. It was the pain killers that made me "normal"
Friends also suggest Alternative treatments like yoga, acupuncture, and just recently a "healer." Being from Louisiana I'd be interested in the "healer" just for the sake of curiosity; bonus points of its some form of voodoo. The problem with all of these though are the same problem I have with therapists.. I have to make an appointment and leave my house regardless of how bad a flare is or else they'll drop me as "customer".
I'm skeptical about yoga, but may try it. Acupuncture.. ehh.. not a fan of needles... and if my mom can find some "healer" that doesn't do anything crazy I'd give that a try.
So, in summary, I really have no idea. I feel the herbs during my first bout helped a lot, but this second one seems to be on steroids and they didn't seem to help too much.. plus the cost doubled with my medicine was just too much. If you have mild IC I'd suggest the herbs. If not then its your choice what to try first.
When I first diagnosed myself with IC via research after my bladder infection pain never went away I was horrified to see the diagnostic process involved a scope, which is wider than a catheter, being slid into the hole where no things were meant to go, and all the while being forced to be awake and aware during it. The hydro-distension looked dangerous and even back on 07 some people were saying it didn't get them a diagnosis until they kept switching doctors.
If there's any doctors out there, can you please tell me why Propofol can't be used for cystoscopies? They use it for routine colonscopies. I'd pay the extra cash, even sell my car.
That aside, thank God the guidelines have changed and its no longer needed.
Back then, (just in '07) that's "how we do things around here," or so said everyone. I felt quite attacked my my beloved IC community of the Interstitial Cystitis Network because I explained my intense fear of doctors, but the badgered me to the point that I left the site. I was 19.
Without a diagnosis I couldn't get the only saving grace at the time, that being Elmiron. I looked all over the internet to try and find a way to get it online. Canadian pharmacies required a prescription as did everywhere else, however, you can get birth control online with no exam needed. This was also something I did to the avoid the "you must have a pap smear even if you only had one partner and you were both virgins."
So I hid. I hid all summer, crying in pain. The only thing I had was Quercetin, something sold to body builders at GMC and some other over the counter supplement unusually used by sufferers of arthritis.
I had no pain meds, but at least knew the diet. And yes, I wasn't "diagnosed" but I knew I had it. Things gradually got better. But not enough to not leave me in agony once school started again. All I had was over the counter azo to help the pain, and thankfully it did good. Slowly, my pain got better.. I suffered through classes.. but by November it was gone. Within 6 months it had gone into remission. Was it the herbs? Maybe. I can't say. But I felt so proud about defeating this disease all by myself.
Then in '09 it returned. I resumed hiding. It was worse this time. I couldn't get to school, or even leave my bed. I took online courses just to keep my scholarships but none was towards my degree. The herbs weren't working this time.. or at least not fast enough.
The a nurse practitioner suggested to me by a friend saved me. She had patients with IC and believe me when I told it that's what it probably was. She gave me a muscle relaxer, and it helped a ton. She still wanted me to go to a urologist, but I told her I was too terrified to even have a pap done. She took care of me for a year until I was ready to try a Urologist, and at this point, the guidelines had changed to diagnose based off symptoms. I was recommended to a female urologist. The very first visit she told me she only diagnosed through hydro distention or the scope, at which I protested, saying the guidelines had changed. The reply was "well, that's just how we do things around here."
I started crying, she gave me a hug, and said she'd give me time to think about it as she attended other patients. I talked with my boyfriend on what he thought was best, and he said he fully supported my decision to do what I felt what was best for my body. I didn't return to that Urologist.
Through the ICN I found one 3 hours away that did guest lectures and such so was more informed. She knew about the guidelines, and unlike the last uro, said that instills wouldn't help the type of symptoms I was having (which was the only thing the other uro suggested).
I got on Elmiron, a ton of pain pills, and as you know, cyclosporine. I'm doing FAR better than last year. I don't think the Elmiron did much as I think my bladder is repaired, but I'm stuck with muscle spasms and false nerve triggers. That's just my hunch since the Elmiron hasn't made me "normal". I may discontinue. It was the pain killers that made me "normal"
Friends also suggest Alternative treatments like yoga, acupuncture, and just recently a "healer." Being from Louisiana I'd be interested in the "healer" just for the sake of curiosity; bonus points of its some form of voodoo. The problem with all of these though are the same problem I have with therapists.. I have to make an appointment and leave my house regardless of how bad a flare is or else they'll drop me as "customer".
I'm skeptical about yoga, but may try it. Acupuncture.. ehh.. not a fan of needles... and if my mom can find some "healer" that doesn't do anything crazy I'd give that a try.
So, in summary, I really have no idea. I feel the herbs during my first bout helped a lot, but this second one seems to be on steroids and they didn't seem to help too much.. plus the cost doubled with my medicine was just too much. If you have mild IC I'd suggest the herbs. If not then its your choice what to try first.
Thursday, January 12, 2012
Second Day of School
I woke up when it was time to leave to had to rush. Thankfully no pain. No pain at all. Not until class was over and I had to do some walking to finalize some errands, then the spasms started. There was a big cold front last night, so I'm surprised I woke up feeling well.
I took my meds, finished my errands, got home and sat on a heating pad before letting my bladder empty itself then that's when the worst pain comes. Well, after going to the bathroom I'm tethered to the heating pad. Its bearable, but makes me not want to move. At all. I really think a wheel chair would be the best option for me for now.. but they are expensive, my insurance won't cover rent on one for a few months, and my mom thinks I'm being dramatic.
So that's my status update. There's housework that needs to be done and I will be screamed at for not doing them, but I'm not leaving this heating pad until I feel "normal" again.
I took my meds, finished my errands, got home and sat on a heating pad before letting my bladder empty itself then that's when the worst pain comes. Well, after going to the bathroom I'm tethered to the heating pad. Its bearable, but makes me not want to move. At all. I really think a wheel chair would be the best option for me for now.. but they are expensive, my insurance won't cover rent on one for a few months, and my mom thinks I'm being dramatic.
So that's my status update. There's housework that needs to be done and I will be screamed at for not doing them, but I'm not leaving this heating pad until I feel "normal" again.
Wednesday, January 11, 2012
First Day Back At School and a Story About Puppies
First day back at school went well. I had some pain after I used the bathroom that morning, so I rested on a heating pad until it was time to get dressed and leave. I drove on substances I shouldn't, but my medical insurance doesn't cover taxies. My town is so backwater I'm not even sure if we have taxies.
Today's class had been the final English course you must take to graduate. This is usually bad news and a hard course, or so you would think. Instead, all it is is planning your future and giving you idea for future jobs -- things we should have been taught in high school. We must follow a blog someone related to future plans. Sadly, we cannot use out own blog, but there's enough ICers blogging for me to catch one. I'll just have to snoop.
It was pretty warm today, but I wore a coat and had a heating pad in my undies anyway to make sure I stayed okay. I had some surprise errands to run, including alerting a seller of free puppies that there is a dog fighting ring nearby and to watch out for young men who "want a free puppy." My best advice was just to get their address and check it out first before deciding to give them the puppy.
She said one guy wanted her to hold one to him and just after I explained the dog fighting ring, he came. She asked me to pretend to adopt the dog since he seemed fishy (and he did -- he was young and looked fairly gangster to me, Mexican style). He was on the phone with someone as she said she was sorry but I had already adopted the puppy. We heard him say on the phone, "Don't worry, I'll find you one. I'll find you one today." This made her feel bad, but I told her that's what the pound is for. There's always puppies, and because you have to pay beforehand to get them spayed a neutered they won't be used as bait animals and in all likely-hood will be taken care of better since the pound insists on worming and vet checking before letting the adoption happen.
So, this could have been two things.
A. He was getting a puppy for his kid or younger brother, but it would have went over a lot better if he had brought the kid with him. Also, just getting the free puppy would mean he likely wasn't interested in spaying or neutering it, vet visits, or anything else that would cost money.
B. He was talking to someone who wanted a bait dog.
Ultimately I think I saved that puppy from either being neglected or being a bait animal. She said two old ladies already adopted two of them, so I felt happy about that. Even if you can't afford to get the spayed, neutered, or take them in for routine checks I feel its better to have an animal loved than put down at the pound, and by being vigilant you can stop unwanted puppies (experiences may differ -- a lab went through a hot fence to get at our doberman.. they made beautiful puppies though, looked like the old Egyptian dogs that were cat-like, thin, black, and agile: the Anubis).
Well it was an eventful day and I was tired but happy afterwards..however after using the bathroom it took 3 hours to control my pain. I spent too long away from home. I'm feeling okay, but hungry, at the moment.
Today's class had been the final English course you must take to graduate. This is usually bad news and a hard course, or so you would think. Instead, all it is is planning your future and giving you idea for future jobs -- things we should have been taught in high school. We must follow a blog someone related to future plans. Sadly, we cannot use out own blog, but there's enough ICers blogging for me to catch one. I'll just have to snoop.
It was pretty warm today, but I wore a coat and had a heating pad in my undies anyway to make sure I stayed okay. I had some surprise errands to run, including alerting a seller of free puppies that there is a dog fighting ring nearby and to watch out for young men who "want a free puppy." My best advice was just to get their address and check it out first before deciding to give them the puppy.
She said one guy wanted her to hold one to him and just after I explained the dog fighting ring, he came. She asked me to pretend to adopt the dog since he seemed fishy (and he did -- he was young and looked fairly gangster to me, Mexican style). He was on the phone with someone as she said she was sorry but I had already adopted the puppy. We heard him say on the phone, "Don't worry, I'll find you one. I'll find you one today." This made her feel bad, but I told her that's what the pound is for. There's always puppies, and because you have to pay beforehand to get them spayed a neutered they won't be used as bait animals and in all likely-hood will be taken care of better since the pound insists on worming and vet checking before letting the adoption happen.
So, this could have been two things.
A. He was getting a puppy for his kid or younger brother, but it would have went over a lot better if he had brought the kid with him. Also, just getting the free puppy would mean he likely wasn't interested in spaying or neutering it, vet visits, or anything else that would cost money.
B. He was talking to someone who wanted a bait dog.
Ultimately I think I saved that puppy from either being neglected or being a bait animal. She said two old ladies already adopted two of them, so I felt happy about that. Even if you can't afford to get the spayed, neutered, or take them in for routine checks I feel its better to have an animal loved than put down at the pound, and by being vigilant you can stop unwanted puppies (experiences may differ -- a lab went through a hot fence to get at our doberman.. they made beautiful puppies though, looked like the old Egyptian dogs that were cat-like, thin, black, and agile: the Anubis).
Well it was an eventful day and I was tired but happy afterwards..however after using the bathroom it took 3 hours to control my pain. I spent too long away from home. I'm feeling okay, but hungry, at the moment.
Likely Pointless Medical Diagnosis that Fits Everyone
I'm Cyclothymic! It's called when I'm in remission and when I'm not in remission.
Tuesday, January 10, 2012
More Pharmacy failure Part 2
The whole morning I spent screaming into my phone, trying to find where I can get a refill. It's my first defense against pain, and its the least dangerous, so its always the one I use first.
STORE said it would take another day to get Uribel in, which my doctor had to change it to. So I called little town store, they had some in, but not enough for the month which was fine with me.. I'd just get the rest later. This was solved after 2 hours on hold while I'm trying to play League of Legends, and while dying and sucking due to random people picking up the phone and asking why I'm on hold like 4 times and say I waiting to know if they have a stock of Uribel in, meanwhile the game has started and like 15 minutes later I get an answer. Okay, they have some.
Co-pay is.. $50!?
For the SAME thing called Utira-C it had been $10! I'm disabled, I have no job, I can't even afford this co-pay. It has the same ingredients as the $10 one, but because it has a prettier name it costs $40 more!? I'm going to have to find another brand, I cannot pay that.
Problem is this drug is constantly swapped. Companies stop making it, then start making it again. I'll have to stop taking it if I can't find a cheaper name, because the name is all I'm paying for.
STORE said it would take another day to get Uribel in, which my doctor had to change it to. So I called little town store, they had some in, but not enough for the month which was fine with me.. I'd just get the rest later. This was solved after 2 hours on hold while I'm trying to play League of Legends, and while dying and sucking due to random people picking up the phone and asking why I'm on hold like 4 times and say I waiting to know if they have a stock of Uribel in, meanwhile the game has started and like 15 minutes later I get an answer. Okay, they have some.
Co-pay is.. $50!?
For the SAME thing called Utira-C it had been $10! I'm disabled, I have no job, I can't even afford this co-pay. It has the same ingredients as the $10 one, but because it has a prettier name it costs $40 more!? I'm going to have to find another brand, I cannot pay that.
Problem is this drug is constantly swapped. Companies stop making it, then start making it again. I'll have to stop taking it if I can't find a cheaper name, because the name is all I'm paying for.
Sunday, January 8, 2012
More Pharmacy failure
Went to store to get meds. Pharmacy was closed due to lunch, so I'm like, ok, I'll go get food that I can eat since I'm low.
I stand in the long line. Its my turn. "We're sorry but we can't fill this script because the makers don't make it anymore."
"I know. There's like a hundred generic versions of it." <-- Info my Uro told me. Said to just find whatever the pharmacy had that had ingredients in it, and the companies making and not making it is common. Its that pill you get when you have a UTI and it changes your urine's color (and stains toilets terribly).
"I'm sorry, but we have to contact your doctor tomorrow to see if we can use a different brand."
The original script already had that taken care of. I was completely out as it was. But you can't sit there and argue with a tech and a huge line of people behind you, so I just left and will take extra doses of whatever I need. They need to make plans for this. Utira-C and all of its buddies and offshoots, are never available everywhere and literally has tons of other names but all the same ingredients. IMO they should ask the patient if its okay if they substitute it or if we'd rather the doctor confirm it. She had. To me. And to the first script. Had the main Pharmacist been the family friend who runs shifts there I likely would have got what I needed at no problem.
The dumbest thing is that this drug is safer than the NSAIDs you purchase over the counter like ibuprofen. Take enough of that and really bad things happen. You can even take it when you're pregnant!
My face.
Attribution
I stand in the long line. Its my turn. "We're sorry but we can't fill this script because the makers don't make it anymore."
"I know. There's like a hundred generic versions of it." <-- Info my Uro told me. Said to just find whatever the pharmacy had that had ingredients in it, and the companies making and not making it is common. Its that pill you get when you have a UTI and it changes your urine's color (and stains toilets terribly).
"I'm sorry, but we have to contact your doctor tomorrow to see if we can use a different brand."
The original script already had that taken care of. I was completely out as it was. But you can't sit there and argue with a tech and a huge line of people behind you, so I just left and will take extra doses of whatever I need. They need to make plans for this. Utira-C and all of its buddies and offshoots, are never available everywhere and literally has tons of other names but all the same ingredients. IMO they should ask the patient if its okay if they substitute it or if we'd rather the doctor confirm it. She had. To me. And to the first script. Had the main Pharmacist been the family friend who runs shifts there I likely would have got what I needed at no problem.
The dumbest thing is that this drug is safer than the NSAIDs you purchase over the counter like ibuprofen. Take enough of that and really bad things happen. You can even take it when you're pregnant!
My face.
Attribution
Saturday, January 7, 2012
Modesty from a doctor's point of view
This is from the Huffington Post.
Click here to continue reading.
Best quote ever: "I particularly hate speaking to a physician when I am in my underwear and he is fully clothed. Either I get to put my clothes on, or he should undress while we talk." - Richard C. Senelick, M.D.
I never should have let it happen. A few months ago my wife became critically ill and was hospitalized for an extended period of time. She received spectacular medical care and the vast majority of the people were wonderful. However, as she awakened and began to participate in her care, some of her first words described the experience as "demeaning" and "humiliating."
The most memorable episode occurred one night when a male nurse insisted on bathing her -- and kept calling her "dearie." As I stood by, he kept insisting that "this wasn't his first rodeo," and "he wouldn't see anything he hadn't seen before." Not wanting to upset the apple cart, I convinced my wife that it would easier to just "get it over with." It was indeed humiliating and demeaning. I never should have let it happen. I am a physician. I knew better, and yet I felt the power of the system and did not want any retribution for not cooperating.
Click here to continue reading.
Best quote ever: "I particularly hate speaking to a physician when I am in my underwear and he is fully clothed. Either I get to put my clothes on, or he should undress while we talk." - Richard C. Senelick, M.D.
Thursday, January 5, 2012
Insurance Scare
I told my mom I was covered until I was 26 regardless of enrollment status, she said I had to be a full time student. I went online to double check and there were three things: Insurance in Louisiana only lasted until you were 24 (that's less than a month away for me), you were covered until 25 as long as you were a student, and you were covered until 26 regardless of anything.
The exception to 1 and 2 was if you have a disability you can stay indefinitely. I email my urologist and she concluded that yes, IC is a disability.
So regardless of what my insurance says on their coverage evidently they're stuck with me regardless. Good. If the "pre-existing" trap ever got me I'd be out on the streets I'm afraid. Now that's one good thing Obama did. He was the one who raised (or attempted to, if it did not work) the age limit to 26. For that I do owe him. I know he isn't popular, especially after the recent military action allowed in the U.S. and the internet censorship bills he signed. This isn't a political blog, but I really feel like the republicans have a noose around his neck. Checks and balances. I really don't think he had a choice in the matter.
I wish they would work out some sort of socialized medical coverage here. One that say, doesn't take 4 days to read through. The basics -- that everyone must pay 50 dollars a month and you are covered, sounds good to me. I'm not sure if this also includes those who'd rather keep their private insurance.. but I've heard some of the changes that already went through is making insurance companies drop customers due to not making enough because of Obama's policies. Of course, in America, you can't trust any news outlet so I don't really know where I stand. I just want something simple, say, real democracy like back in the Greek City State where everyone voted on a law or bill rather than letting representatives do it. I've never met my representative, so how can I be represented?
Also, this is a real interesting read on patient modesty and how its treated around the world. http://www.leighbureau.com/speakers/agawande/essays/nejm.pdf
The exception to 1 and 2 was if you have a disability you can stay indefinitely. I email my urologist and she concluded that yes, IC is a disability.
So regardless of what my insurance says on their coverage evidently they're stuck with me regardless. Good. If the "pre-existing" trap ever got me I'd be out on the streets I'm afraid. Now that's one good thing Obama did. He was the one who raised (or attempted to, if it did not work) the age limit to 26. For that I do owe him. I know he isn't popular, especially after the recent military action allowed in the U.S. and the internet censorship bills he signed. This isn't a political blog, but I really feel like the republicans have a noose around his neck. Checks and balances. I really don't think he had a choice in the matter.
I wish they would work out some sort of socialized medical coverage here. One that say, doesn't take 4 days to read through. The basics -- that everyone must pay 50 dollars a month and you are covered, sounds good to me. I'm not sure if this also includes those who'd rather keep their private insurance.. but I've heard some of the changes that already went through is making insurance companies drop customers due to not making enough because of Obama's policies. Of course, in America, you can't trust any news outlet so I don't really know where I stand. I just want something simple, say, real democracy like back in the Greek City State where everyone voted on a law or bill rather than letting representatives do it. I've never met my representative, so how can I be represented?
Also, this is a real interesting read on patient modesty and how its treated around the world. http://www.leighbureau.com/speakers/agawande/essays/nejm.pdf
Tuesday, January 3, 2012
I got an article published on the lovely blog of Dr. Joel Sherman on patient privacy
I've followed Dr. Sherman's blog for years, lurking. It's on a topic very close to me: medical ethics and privacy/patient concerns that aren't met. Just travel to the ICN which I have linked on my side bar and you can read the horror stories posted weekly by uninformed patients who have had doctors talk them into terrible things with minimal pain relief.
This is why this blog is here. To advocate. To help you research what you need, to fight back, and if need be, jump ship to another doctor who fits you better.
Dr. Sherman's blog is also linked on my side bar. The comments left under his posts are enough to make a book out of, and most relates to horror stories from patients of other disorders or those just trying to have a proper physical done.. and even those who are just trying to get hormonal birth control pills without being violated by an invasive test they feel is unnecessary. And yes, in most cases it is unnecessary, especially in the cases of virgins since the cancer is caused by a STD.
The link to the article is here.
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As for my personal IC updates last night was a terrible one. The temperature kept dropping and my bladder was burning with nothing inside. Nocturia is when a patient can't sleep through the night because of the need to constantly urinate. Usually this comes with older people who have IC and frequency issues whereas my symptoms are pain and urgency related. Well, I woke up quite early in severe pain and stumble to the bathroom. After voiding I felt much better and slept until 3 P.M. I woke up feeling okay. I'm afraid to visit the bathroom again because for me my symptoms chance with every bathroom use.
This is why this blog is here. To advocate. To help you research what you need, to fight back, and if need be, jump ship to another doctor who fits you better.
Dr. Sherman's blog is also linked on my side bar. The comments left under his posts are enough to make a book out of, and most relates to horror stories from patients of other disorders or those just trying to have a proper physical done.. and even those who are just trying to get hormonal birth control pills without being violated by an invasive test they feel is unnecessary. And yes, in most cases it is unnecessary, especially in the cases of virgins since the cancer is caused by a STD.
The link to the article is here.
-----------
As for my personal IC updates last night was a terrible one. The temperature kept dropping and my bladder was burning with nothing inside. Nocturia is when a patient can't sleep through the night because of the need to constantly urinate. Usually this comes with older people who have IC and frequency issues whereas my symptoms are pain and urgency related. Well, I woke up quite early in severe pain and stumble to the bathroom. After voiding I felt much better and slept until 3 P.M. I woke up feeling okay. I'm afraid to visit the bathroom again because for me my symptoms chance with every bathroom use.
Monday, January 2, 2012
Life as a Weather Balloon ( cold front flare)
I am the perfect weather balloon. Mother said cold front was coming yesterday, but my body say no, everything's cool.
Late last night I have a terrible spasm that felt like a menstrual cramp, only in the bladder, and that HURTS.
I wake up today in pain... and wouldn't ya know, the cold front was a day late.
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As I stated earlier the best coping strategy is to distract yourself. There are some flares you can control such as stress or food flares, but then there are others when you can do nothing like a flare caused by the weather. The only thing you can is take all your pain meds, tether yourself to a heating pad, and then distract yourself. Unlike the advice my mom gives me, sleeping does not work if you are in pain. Works great if you have the flu, doesn't work if you have IC unless there's a drip of morphine going into you.. not to mention holding in urine too long while sleeping all day is just going to make it feel worse when you wake up.
That said, I was pretty happy to open my present and find Skyrim. I was like, cool, I'll go play it now! I remember the soothing music from its predecessor Oblivion helped me stay relaxed a lot.
Well, Skyrim had DRM added to it. For non-gamers, that means that you must have internet connection. For someone living with a 10gig cap of bandwidth, and when the DRM makes you DOWNLOAD the game despite the fact that you BOUGHT the CD, its going to cost a lot of time and money. So I started off mad.
Then about 14 minutes into the game it froze and locked up. I run a 64bit system which needs 4gigs of ram. Skyrim was made only to use 2gigs. So, the memory is getting clogged. Someone fixed this, but with the DRM patch that was forced on me with the CD it broke the fix. So I am the unhappy owner of a game that crashes constantly.
Oddly, I find that anger helps my symptoms. Probably because it distracts me. But I did sent corporate a nasty email.
As for the flare itself it's pretty nasty.. despite my drug-lord level of pain pills, its just helping me ignore the pain rather than get rid of it like it usually does. There's really nothing else I can do. It's feeling pretty bad now. When I'm in this state I don't want to talk to other people or play with them. I usually just browse forums, blogs, or single players games. Guess I'll save every 2 minutes in Skyrim.
Late last night I have a terrible spasm that felt like a menstrual cramp, only in the bladder, and that HURTS.
I wake up today in pain... and wouldn't ya know, the cold front was a day late.
------
As I stated earlier the best coping strategy is to distract yourself. There are some flares you can control such as stress or food flares, but then there are others when you can do nothing like a flare caused by the weather. The only thing you can is take all your pain meds, tether yourself to a heating pad, and then distract yourself. Unlike the advice my mom gives me, sleeping does not work if you are in pain. Works great if you have the flu, doesn't work if you have IC unless there's a drip of morphine going into you.. not to mention holding in urine too long while sleeping all day is just going to make it feel worse when you wake up.
That said, I was pretty happy to open my present and find Skyrim. I was like, cool, I'll go play it now! I remember the soothing music from its predecessor Oblivion helped me stay relaxed a lot.
Well, Skyrim had DRM added to it. For non-gamers, that means that you must have internet connection. For someone living with a 10gig cap of bandwidth, and when the DRM makes you DOWNLOAD the game despite the fact that you BOUGHT the CD, its going to cost a lot of time and money. So I started off mad.
Then about 14 minutes into the game it froze and locked up. I run a 64bit system which needs 4gigs of ram. Skyrim was made only to use 2gigs. So, the memory is getting clogged. Someone fixed this, but with the DRM patch that was forced on me with the CD it broke the fix. So I am the unhappy owner of a game that crashes constantly.
Oddly, I find that anger helps my symptoms. Probably because it distracts me. But I did sent corporate a nasty email.
As for the flare itself it's pretty nasty.. despite my drug-lord level of pain pills, its just helping me ignore the pain rather than get rid of it like it usually does. There's really nothing else I can do. It's feeling pretty bad now. When I'm in this state I don't want to talk to other people or play with them. I usually just browse forums, blogs, or single players games. Guess I'll save every 2 minutes in Skyrim.
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