Injustice

The biggest injustice is that the layman cannot do medical research for himself because he does not have access to the scholarly journals doctors do due to their price, and so he must be blindly lead in good faith by what his doctors say.

We cannot have patient oriented healthcare like this.

New Definition of Rape

New definition of rape: http://blogs.usdoj.gov/blog/archives/1801

“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.

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.

Dysfunctional Pharmacies are Dysfunctional (Can't get my meds), good and bad doctors, iatrophobia (fear of doctors),and forced pap smears

Alright, so I usually use a major retailer that is in just about every city and everyone knows the name of for my pharmacy needs. You know the one I'm talking about. Well, as you know, I was given CycloSPORINE (that's how the caps are written on the box, I don't get it either) under the hypothesis that IC may be an immune, not auto-immune, disorder in which my body is making too many cytokines -- the nasty pain and swelling causing part of the immune system (this is how my uro explained it) -- and they are causing IC in my bladder. However, it appears no one knows much about them since evidently researches can't decide what is a cytokine and what is a hormone.

Awesome, research guys. Why are we funding you again?

Anyway, CycloSPORINE is given to organ transplant patients so the immune system won't reject the organ, or in other words, it lowers the immune system's powers. If a patient who was an organ transplant recipient were unable to receive this medication, I'm no doctor, but, I would assume something bad would happen, right?

So why is my main, huge retailer always out of stock even though they said 3 weeks prior they were going to call in an order for me so I didn't have to worry but when I call in for the refill they say they can't get it in for another four days and I only have three days left thanks in part to insurance companies making you wait until the last minute and me assuming the retailer had kept their promise.

They didn't. I call another pharmacy in town, a very small one that might be nation wide, I have no idea, but its connected to a doctor's clinic and they say they don't usually carry it but they can have it in by tomorrow. This is awesome.

We pick it up the next day and evidently being a consumer there means you can get a free coffee or cappuccino, yay! Except.. I have IC and if I drink that I'd be urinating blood for the next 3 days, but my boyfriend did greatly enjoy the free coffee. Regardless, it's a cool gesture from a pharmacy.

Now, the problem.

I couldn't ask for a refill until the 30th which was yesterday... my uncle died, as previously posted, I was very preoccupied mentally, so assuming they were like the mahor retailer I held it off until today (a Saturday) assuming they had some sort of machine answering service for me to leave my refill order.

They had an answering service, but it was "only for emergencies." What is an emergency? I'm not a doctor. Is having a chronic disease that it potentially being helped greatly by this medicine which will run out Monday, New Year's day and likely a holiday so they will be close, an emergency? Or is being an organ transplant being in the same predicament an emergency? What if I have a very painful UTI and places like this were the only ones in my town? Is that an emergency?

I assume that in my current case, it is not an emergency as I would likely be alright missing a day or so since CycloSPORINE hasn't been FDA approved for IC or anything.

I will say that I am doing FAR better than I was last year. I could hardly leave my room or focus and had to quit school attendance 3 weeks early when the cold fronts hit.

I still feel awful when a cold front hits, and its fairly warm, so one is due, but I think I'm recovering faster? Or is it the pain meds? Is it the CycloSPORINE with the pain meds? I honestly couldn't give an answer, I just know I'm doing better. Maybe the weather's just being a lot gentler this year.

I'm just glad missing a few days of CycloSPORINE isn't like missing a few days of hormonal birth control pills. Then maybe I'd be considering that an emergency.

When I was ordering my birth control pills online to avoid the now controversial pap smear I'd order 3 months worth and order three weeks in advance to be sure I'd have it. I tried this with the pharmacies after my IC hit and they had to explain to me that insurance companies were evil and stupid (not a direct quotation).

Also, I had no problems ordering the pills online. I got a lot of hate from other women because I was doing that, but I had made an autonomous and informed decision on my healthcare so they can go stuff a stick up where the sun don't shine and the water flows.

One good thing about IC other than making me lose weight is that it gave me anger. Before I was no-drama-allowed and would back down, question my beliefs, feel bad, and just generally be a nice person who didn't want to step on other people's shoes. I try to remain like that in most cases, but unfortunately back then I was like that in all cases, even when I needed to stand up for myself. Now I can stand up for myself. Angrily. But I can. I am no longer that meek child I was before the 3 years of IC. I still cry at doctors offices (my first uro) when they offer really bad diagnostic or treatment options, but NOW I will walk out on them. Some day I hope I'll be able to verbally stick up for myself with direct quotations from medical journals, even if I may be very angry while doing so. I'll still walk out, but not until after a thrashing from peer reviewed, cited sources.

I still do have a problem with pap smears even though I love all my doctors now. I think the issue is that I'm feeling forced into them to receive the birth control pill. If it was for another reason it wouldn't bother me. I do need to ask my GP about my pelvic muscles since I think I may have Pelvic Floor Dysfunction which is causing the spasms more so than the IC, which I'm find with having a pelvic exam, but I'm afraid she's one of those doctors who will enforce the pap at every visit despite conflicting studies coming on the practice. She is only a nurse practitioner, so on the other hand she may be forced to do it by her high-up who I despise after an ordeal with. My GP is working on getting her MD, and I can't even imagine running a clinic and schooling from MD at the same time, so I do understand if she has no choice in the matter. All I know is that she didn't force me to have a scope stuck up me and gave me a YEAR and possibly more to find the right Urologist. She gave me muscle relaxers which helped greatly even though she couldn't diagnose the IC herself, but she had been scoped before and knew how painful it was. She also takes care of a few other pre-diagnosed IC patients so was fairly knowledgeable on it for just being a GP.

Now we really have to advocate for some kind of sedation for the scope. Many Urologists feel this is unnecessary because their other patients can go through it awake with maybe some Valium. BUT IS THEIR URETHRA AND BLADDER SWOLLEN AND SPASMING!? ARE THEY TERRIFIED OF SIMPLE PELVIC EXAMS!?

A one-way approach doesn't work, doctors. Oh, and by the way, like pap smears, my instincts were right all along about the scope and hydro as a diagnostic method. Summer of 2011 brought changes to the diagnostic methods. These changes stated scoping IS NOT NECESSARY unless in complicated cases, such as the rare percentage of ICers who get ulcers.. then yes, they need them removed. But for a formally completely healthy 19 year-old girl with only one boyfriend, both of which already virgins with no history of bladder cancer (and didn't see another doctor for 2 years while having a remission and wasn't dead or having cancer pains yet)?

My instincts to me to run, I did, I escaped would could have possibly set my iatrophobia out to kill me later in life.

Lesson? Listen to your instincts. Research, research, research, and make a decision and stick with it until finding a doctor who agrees. There's so many takes on IC that IC diagnosis and treatments are like religion. Which religion is right? This doctor swears their religion (AKA metaphor for treatment/diagnostic method) is right and you are a dumb ignorant person for not agreeing where as this other doctor believes the total opposite!

IC is like a magical disease in which you can eventually find a doctor who believes and feels exactly as you do. The hard part is finding them.


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On an unrelated note I learned that my Uncle had bought his cremation urn 7 years ago and his funeral wishes were not to have a funeral, but instead to have each household of the family take the urn and pass it around. When you get the urn you must throw a huge, happy party.

This is all I need to say to explain how awesome my Uncle was.

Always keep this picture in mind while at a doctor's office

My first urologist demanded I have a hydro to be officially diagnosed. I knew I had IC for three years based on food triggers, remissions, STDs being ruled out, and finding the ICN support group.

For someone my age (19) it could have only been cancer, an STD, a stone, or IC. STD was ruled out. I didn't visit a doctor about my IC after the first one told me to go get a scope for diagnoses until just last year. So three years of on and off pain, a year of remission, and nothing else happening meant it wasn't cancer and not a stone.

It was painless way to rule out everything else.

Now my first Uro was a kind lady. She gave me a hug when I started to cry. I cry easily, especially when frightened, and I'd rather fight a shark than have a scope done on me while awake. (Actually, I'd fight a shark just to do it.. I love marine biology and know they're pussies if they can't get a stealth attack in, but alas, this blog isn't about fish).

She left me alone in the room with my boyfriend to make the decision. And that was the picture that popped into my head and made the decision. What was wrong with her? The new guidelines clearly stated hydros were USELESS for diagnosing and scopes were only need in complicated cases such as ulcers, which I did not have or else I would have been screaming the whole car ride over. What is wrong with these doctors? Don't they read guidelines? When I confronted her WITH A PAPER FROM THE ICA that had the new guidelines she said, "Well, that's just how we do things around here." Kind of like when you were a kid and your parents would win any argument just by saying "My house, my rules." It was patronizing to the extreme.

Thankfully I had researched hydros months before the appointment and found that its basically a 50/50 chance of it helping or permanently hurting you. Not worth the risk.

I walked out, still thinking of that picture.

I'm very happy I did. I found my dream urologist who doesn't even charge a co-pay, gives free samples of anything you request, listens, and also provides tips on day-to-day life and letting me know that GMC sells quercetin pretty cheap, and that yes it helps IC (something I already knew, but I didn't know GMC sold it for much cheaper than Cysta-Q). She also gave advice how to get rid of the toilet stains the Utira-C would cause.. and basically.. just treated everything by informing me of everything she knew that wasn't directly medical related, but would certainly help me live my life easier.

Dr. Grumpy on his blog made a post about "That Lady Doctor" which gives out free meds, prescribes anti-biotics for UTIs at 2 A.M., speaks to patients in stores, gives free medical care, and other such things. He was being sarcastic. But you know what? Both my uro and GP are "That Lady Doctor." They exist, much to his disbelief, and those are the ones you need to find.