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.