For $5000 evidently you can have your own personal hyperbaric chamber!

I'd equate it to a vampire and his coffin. One of the ads at the bottom was advertising one for that price. With my insurance co-pay (IF they pay) it'd be $80 a trip. Could just get a loan, freelance write hardcore, and keep one in my room so I can totally be a vampire with a coffin and all that.

According to them:

Elimination of intravascular and tissue gas bubbles, which trigger coagulopathy and other mechanisms in the complex diving disorder, decompression sickness.

Restoration of CNS perfusion by compression of intravascular gas emboli in pulmonary over-pressure diving accidents or iatrogenic intravascular gas embolism.

Increased partial pressure of oxygen (tension) which increases the amount of oxygen dissolved in plasma. This can increase oxygen levels to approximately 450 mmHg at the tissue level.

The effects of increased oxygen tensions are seen in a variety of different situations:

Vasoconstriction and reduction of edema in the area of trauma. Oxygen tension may be 10 to 20 times that achieved by normobaric oxygen breathing.

Rapid dissociation of carbon monoxide molecules from hemoglobin and cytochrome A3 oxidase (23 minutes at 3 ATA) as well as greatly improved delivery of dissolved oxygen in the plasma.

Stimulation of growth and occurrence of fibroblasts, osteoclasts and granulocytes, resulting in wound healing. The resulting angiogenesis enhances healing skin grafts, select problem wounds and compromised flaps.

Cessation of alpha toxin production by the clostridial organisms in gas gangrene.

I'm still not sure how this can help people with IC but the research tells me its the next way to go.. and if they want to charge an arm and a leg then I can stuff this thing somewhere after a large loan (only after discovering if the therapy is the cure for me though).

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.

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

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.

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.

America's Healthcare

http://www.photius.com/rankings/healthranks.html

Every other first world country but us... perhaps Obama's plan was crap. It was too long, too much.. but now everyone's too busy with the defense authorization bill and trying to censor the internet to return to this issue.

And ranked 37.

I'll be kicked off my stepdad's insurance at age 26. Thanks to Obama it was expanded to the age.. the old age had been 23 I believe? Which is in two months. My meds, without insurance will cost over $500 a month. At this time I cannot work. I will hopefully aim for landing a transcriptionist job since it can be done at home. I'll finish the schooling within the 3 years... question then is... would there even be job openings?