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.

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.

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.

Christmas has been delayed by a cancer called Leiomyosarcoma

My uncle had been diagnosed with Leiomyosarcoma in the lungs a few weeks ago. He had no job and lived very modestly in a self-built house out in the woods, so I'm positive he put testing off. And I can't blame him after my own experiences with Interstitial Cystitis. What if you get that crazy doctor that wants to stuff tubes and cameras up every orifice with no GA? Not to mention the cost.

He was at my grandmother's funeral. He had oxygen, but was talking and walking. He looked pale, but he seemed okay.

We couldn't get any information out of him or his wife because they just couldn't understand the doctors. They have no internet, no ability to research, and I'm sure they couldn't keep up with the jargon. It took two weeks for my mom to get the name of the cancer so I could start the research -- research which she was was extremely good, but not useful as he is now dying.

I woke up today with no one home. This isn't unusual. I needed to find my tax return papers to set up some things for this blog so I called her and that's when she told me the news that one of his lungs of collapsed and the doctors said it was too late to move him anywhere.

We were trying to get him to Houston since it has one of the best cancer treatment facilities in the U.S.

My mom and stepfather took off to Florida to see what is going on. We can't get any information from the family because they don't know. They just said the doctor said they "couldn't move him now." Not that he was dying, how severe it was, or even what stage its in. I know it can be surgically removed, but evidently at this point its likely too late. If we had known sooner then this would be no big deal.. but its a rare cancer, I'm sure he suspected nothing until the pain, and then he held it off until it got bad.

If it is end stage I will advocate for palliative care AT HIS HOUSE even if I have to scream at the family. There's no point for painful tests for someone at end stage cancer.

Yet as stated above we can't understand the family members because they can't understand the doctors. Originally I was planning on going to Florida with them (with pain meds, heating pads, and possibly an army tank to beat my IC down long enough for such a trip) so I could be there and be the patient advocate since I'm a "professional" patient. I had no idea it was this bad. He was WALKING a few weeks ago.

If he does pass, then I can at least be thankful that it was a very fast descent. If he survives this and it truly is the end then I'm contacting hospice services myself if I have to in order to get him back home and in comfort.

This was the "fun" uncle. The one you always loved. I didn't cry for my grandmother except at the funeral because we knew she was dying for a long time. But I'm crying now because my uncle is young and always took yearly trips to come see us. Our visits to his house were the funnest times of my life because he lived near one of the most beautiful beaches in Florida. We also had fun Sasquatch hunts and a fresh spring creek with crystal clear, ice cold, fresh water that we could actually drink straight from.

Our presents will remain under the tree until the family returns. I will fight 1. to have the cancer treated at only the best center in the U.S. or 2. Be sure to get him the best hospice care available and to insure he will not be in pain.

He worked at a chemical plant for a few years.. this isn't from smoking. If he does pass I know where I'm aiming my weapons next.