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.

At 8:30 this morning my Uncle died. My mom said she whispered in his ear that it was alright for him to go to mom and and dad and that we'd all take care of his wife. She said he took two more breaths then left.

Musings

You know I was just thinking.. a lot of ICers say their flares are worse than giving birth on the pain scale.. So, how about we just pack up everyone with IC and send them off to war. See, we'd be awesome at ignoring bullet wounds. We'd likely move like zombies, but it'd take quite a bit to stop us from moving.

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.

Christmas

Christmas went pretty well. The weather stabled to cold and gave me some relief. I'm still worse off than I was in summer, but overall am doing better than last year. I only opened one present as stepfather does not return from offshore until tomorrow. Present was Riot Points from my boyfriend, which is online currency for a game I play.

If you have IC, you HAVE to have something to distract yourself with.. mine is raging at people on my team that only speak Spanish and die a lot. Plus I do generally have fun.

Skyrim is sitting under the tree.. I'll get that tomorrow.. Melee Kahjiit it is.

I cooked some good gumbo.




I'm very diet sensitive, of course. Only things that went it was oregano, fresh garlic cloves, basil, crab meat, and shrimp meat. My mom did buy the ingredients for it, but I split it half-and half with her as repayment. The meat was bought at a local stand, so no preservatives. The kicker? The woman running it has IC too. This is a small town I'm in. And I now know of two women with IC. Evidently hers is mild and only hurts if she drinks soda. If course, my mother compared me to her and asked why is she doing so much better than me.

Earlier we got in a fight again. I wouldn't say fight. I was just submissive. She complained how I never clean house and I'm always playing on "that damn computer."

Well. The computer is my only access to the outside world and.. I do a lot more research than reading... that aside, I do try to keep up with things, but in the mornings of winter I MUST have an hour's time to take pain meds, sit on a heating pad, and relax, hopefully with breakfast.. after that I may continue to hurt, or I may not. At which point I'll either tackle some house work or remain on the heating pad.

The main problem with my mom is that even when I do clean, it only brings more complaints. I do the dishes, why didn't I clean behind the toaster? (Because I don't think to move the toaster every day to see how nasty it is.. I can't even eat anything that comes out of it.)

Towels is the main argument. I do towels daily, but there's always a pile on the floor despite having stocks in the bathroom for use. This is because I must urinate in the tub with warm water spraying at the pelvis to control spasms. Since I'm on the pill that turns my urine blue, this leads to blue stains in the tub. She complains constantly about this as well. I do spray bleach in it about once every two days, but it's my only option. I tell her I'm sorry. Because of this I use a towel to dry off before leaving the bathroom. We don't have actual heating in the house, just electric heaters where we need them. This doesn't include the hall. It is very cold, and bad for spasms, so I often will leave my towel on the floor until I come back out for something else after being fully dried and re-warmed. She complains about this and doesn't understand why I leave towels on the floor.

Thing is, I just don't pick it up fast enough. When she leaves on vacation everything gets done, just as it does now, but everything must be done on her time and not on my bladder's time.

Its 7 A.M. now. I'm tired. I want to sleep. But my bladder controls my schedule. I must complete this water bottle or else I will awaken with burning from condensed urine in an already irritated bladder.

I would really like to see a therapist about all this. The pain, dealing with family who can't understand, and worries about my future. Sadly, this is a cache 22. I'm chronically ill with pain and am very hesitant to leave the house. The therapist is not at my house, and if I call in absent on the day of the appointment enough times they can drop me. Worst thing about IC is its unpredictable. Symptoms change every four hours for me, or in other words, every time I urinate. There's no such thing as web-therapists that I know of.. or at least, a therapist that'll meet me in person and maybe do e-mail or chat sessions with me on bad days. Do they do this? I don't know.

And yet again, this costs money.. the final thing my mom was complaining about. I live off financial aid from my school. I don't get paid until February. Right now my boyfriend is paying for most of everything. I can't reimburse my mom for what she spent on my medications. Per month, with good insurance, I'd say its about $50.. and I'm broke.

The way she words it is that I should be doing "something" for money. But who will hire a person that can only work maybe 4 to 6 hours a day on good days and be absent many days for winter? During the summer I could perhaps find a seasonal job.. but now I'm fairly useless in most ways. Only thing keeping me sane is my boyfriend who gets it.

Feeling like I'm being blamed for my illness, or lying about the pain, due to the words of close family members hurt a lot. ICers are 3-5 times more likely to commit suicide than healthy people. They say the main reason is from the pain, which I can see, but also definitely when there's little family support. Mother does support me, but she makes sure I know she thinks I'm playing my pain up more than what it is.

According to her sick people in pain should be in bed sleeping. My pain is near constant. She's only suffered from labor and the flu. I can't sleep for my entire life. I raise this point and she, in a round-about-way, accuses me of just being a hypochondriac since I'm healthy enough to sit in a chair (on my heating pad) and play those "damn" games.

I don't know about anyone else..but sleep is impossible if you're in pain. I know a lot of ICers hardly sleep because of this.

I could very likely get my uro to write her a note, but really, she won't even read the most basic information on IC despite how I present it to her. I really want to move out but just can't.

In the end I was near tears. She says how she must work in the rain and deal with abusive bosses... but I'd trade her my life for hers. While her job is shit, she owns a motorcycle and goes on many adventures with my stepdad when she's off. They just went to Georgia. They always ride in bike rallies. They have plans to go to the Bahamas.

I'm too afraid to leave my property much less state. She attends rock concerts and parties. I stay at home sorta high on Soma and click a mouse at people because it doesn't require walking or pelvic motion of anytime.

The Blind

Mother continues to dismiss my pain. I requested help getting a fold up wheelchair for campus use weeks ago and she said it was stupid, I would only weaken my legs despite me telling her I wasn't going to use it in the house.

After the flare yesterday I've decided that I do NEED one for those days. Bonus points if I can find a battery operated heating pad.

You know what she did? She gave away my Grandmother's scooter to my uncle (which is fine, because I can't load that in my car and he has cancer), BUT the folding wheelchair? She's giving it to some distant relative who's "old."

So I'm not "old" enough in her eyes to use a wheelchair to prevent flares. When I talked to her again, asking for the free wheel chair she said, and I quote, "That's ridiculous."

The hardest part is at the beginning of this she was very supportive. She made food for me when I couldn't leave bed, bought me things I could eat, and paid for my meds. Now? No. Now I'm just making it up because I should be "better" by now. I've been completely dismissed. I'm going to try and get one through insurance. So rather than give me a free one, I have to waste more money.