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.

Why I Hate Everyone

This is a post written amidst a flare. I will be hateful, politically incorrect, and highly offensive with bad words. This is also a public post because it needs to be heard, or at least, what IC does to a person's mentality.

I hate everyone today. I had to go get blood drawn but had to be driven an hour there and an hour back to the lab. I didn't feel the needle. It went great. I was already in a flare. I've been in once for the past 2 days, but the meds I've been taking made it bearable and I could play games and distract myself. Walking and leave the house is a bad idea. But I had to today.

I brought heating pad with me. Ride there and ride back as okay, but we needed to go to walmart to pick up Kleenex and maybe something edible for me. I find that matching my usual walk fast pace just makes it worse, so I ask James to tiptoe with me as it's the only way I could do it. All the wheelchairs for taken -- by fat women. Fat fucks who, SURPRISE, riding in a wheel chair isn't going to fix that. And these women all seemed chipper. Well of course, they weren't sick. maybe walking just her because they were so fucking fat. Who knows. So I just brave it out.

I get to the cereal aisle and a spasm punches me in the gut. This type of pain is hard to describe. The simplest way is to say imagine the worst bladder infection you've ever had, but no medication will stop the pain. But I'll say it felt like I hadn't urinated for 24 hours beforehand, and this new spasm felt like my bladder was ripping apart. I told James I was out of there. I had to go back to the car, put on the heating pad, and lay down.

I blame it on the fat fucks. If I could have gotten a chair the jostling wouldn't have triggered this. I wish their leg/back pain would kill them, but it won't, so they'll just get fatter and keep using the chairs. This is why I want my own damn wheel chair. This season is destroying me like it always does. Will I graduate this year? I have no idea. If the IC behaves, yes, I will. if not then no, I have to waste yet another year on online courses and another year keeping me away from getting a job I can do online.

I hate all the healthy people. I hear this is common with cancer patients too. I hate them. I despise them and their first world problems that they complain about. I'd trade them.

Do you want to pray for me? Please do. Even though I despise organized religion of any kind, I'm not a scrooge about it. I prayed constantly last year. Deus ex machina didn't happen.

I'm hurting bad. I can't even play with James and it feels like I'm wasting his vacation. I went to bed early last night. I woke up early. It doesn't matter what time of day it is, it will hurt. Until some asshole finally decides to do research on temperature change and chronic illnesses I think we're all fucked. I know my other chronically ill friends are having a hard time this winter too. Something is happening, but no one cares to research it because it brings in no money.

This isn't an infection I don't think because last night I felt pretty normal. The morning/dayti flares are what are destroying me.

I'm taking Valium, soma, elimiron, utira-c, oxybutinin, and benedryl, and even with all this shit still I feel like my bladder is destroying itself.

Now factor in the only thing I can safely eat are mostly tasteless things. Plain rice, some wheat, and if I'm brave then mild cheddar cheese. So I sit watching these fat fucks stuff their mouths with McDonald's breakfast items (which I love and crave) and then watch them scoot on out with the customary Wal-mart scooters and I'm expected not to hate them.

I'm usually not a hateful person, not ever, I don't even hate Hitler, I just want to understand why he did what he did and say it was wrong but from that viewpoint (evidently his mother was impregnated by a rich Jewish guy she worked for, or so the school databases suggest with some evidence such as Hitler turning the graveyard his "dad" was buried in into an artillery range so that everything would be destroyed..) So no, I don't hate him. Not even him.

But now? Today? At this moment? I'm filled with it for everyone. Even those who didn't take the chairs. I suppose it comes with the "why me?" sentiment.

So what now? James won't and can't move to South America every winter. I can't work outside the home unless this goes into remission. And at 26 I am kicked off my step dad's insurance plan. That blood test that I have to do every month costs $140 by itself without insurance. Elmiron costs $500, and I won't even bother looking into the others unless I want to depress myself me. I don't think this thing will go into remission within 3 years.

So what do I do now? The worst part is NO ONE CAN SEE THIS. It is not visible. If I took the chair I'd be glared at. If I accepted my doctor's offer for a handicapped parking spot I'd be glared at. But right now I am handicapped, badly handicapped. No housework will be done today, and my mom won't let me forget.

If my bladder is removed it'll do nothing. It's the muscles triggering it. But they're connected to everything down there and can't be removed.

Will the Republicans pay for my medications? No. Will the Democrats? Maybe, but I'm not so hopeful. I can't get disability because I never had a chance to work because of this. I can get SSI, but when look at me and my age and depending on the day I can look pretty damn healthy I suspect I'll be denied repeatedly. Will my urologist vouch for me? Maybe. But she's already stuck her head out for me by giving me all these pills and I'd hate to put more work on her. In the end I may have to. I guess along with James, Chris, and my other chronically friends she is the only other person I don't hate right now.

So now what? Seriously. Tell me what you would do in this situation. I just want to get my degree and go for a masters. I would love the hell out of being a teacher student. But I can't. I'm crippled, but not crippled enough for the government to help me.

I'm cross posting this everywhere. THIS IS IC AND THIS IS WHAT IT DOES. THIS IS WHY I DON'T VISIT MY FAMILY. THIS IS WHY I CAN'T VISIT MY GRANDMOTHER IN THE HOSPITAL. THIS IS THE REASON MY BOYFRIEND MAY EVENTUALLY BREAK UP WITH ME (though he's been a trooper so far). You can all stop making me feel guilty. Perhaps it'll lessen my hate a little.

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?

Jinxed myself

Week of my period..

Bladder spasms seem to have replaced uterine spasms. Its a deep, unusual pain for that area. Now its back to urgency feel.. took everything I could. Not working. Heating pad, not working. It hurts. There's no way I could hold down a job or attend school at this level of pain. I'm glad finals finished right before this week..

Feelin' good

Finals are finished I and I had no flares. I've even cut down on the pain meds today. I hope this normalcy continues =)

Finals

Felt pretty good yesterday. Today I'm just using heating pad as a caution since I need to study for my first final which is.. tomorrow. I'll just hope my papers were good enough to get me over the hill. Really, they didn't tell us a thing until before Thanksgiving so we were forced to do our papers then (3 classes) and turn it in, and only have 1 week of class, and then finals (2 classes). I'll play a game to wake myself up with for a bit.. have a little fun.. then go lay down and study.

Yay warm

It's warmed up and I've woken without burning. So far I feel like a normal human being today. It feels nice.

Not looking well.

I'm not sure if the cyclosporine is working. I've had terrible pains since 6. I took everything I could constantly., had a small period of time where I was mostly pain free, but as soon as I urinated everything went to hell despite the massive amounts of muscle relaxers I took. It's these damn cold fronts. I'm positive the temperature must have dropped by 10 degrees at least, and I can say this without even going outside. This Soma needs to hurry up and knock me out. I might end up going the way of Michael Jackson, when you're in pain you don't give a shit.

This isn't like labor pain, or a very painful medical procedure because this pain is chronic. I could stay in this state for a day, or weeks. I think my doctor's given me everything she can. And even with all this high leveled, controlled substances it still feels like there's and angry cat in the bladder. It burns and it spasms.

Earlier today I only spasmed when I walked, so this lead me into look for cheap wheelchairs for when I have to leave the house in this condition. Well now its just ripping itself apart for no reason. My mom discouraged the wheel chair idea, but if this is going to happen every winter I need something else to help!

Oh, right, and my pharmacy is out of cyclosporine anyway so I have to wake up early and go to this other place that magically conjures up whatever medication exists. Its more expensive, but probably because they have hired a wizard.

Hurting badly

Burning isn't a usual part of my IC, but with the weather its started to constantly burn and when I move the entire thing spasms. I makes me not want to stand. No research has been done on weather and IC, but it really needs to be done. A lot of ICers have extra problems during the cold months.

This would be the thing keeping me from getting a job. My normal pain can usually be ocontrolled, but despite taking valium, oxybutin, and soma it only help slightly. I need to move to the equator or something.. though my cousin said Los Angeles never gets cold or hot.. But like he said, cost of living there is insane.

So I remain tethered to my heating pad. My Grandmother's burial was today and thankfully I made it there during my 4 hour safe period. Look at a few of the grave, saw quite a bit of WWII vets who died in the 70s so they survived the war, but found one that died in '44... so.. he didn't live. There was one Vietnam one who died in the 60s, so I assume he didn't survive that war.. Saddest one was a family plot. Me and my nephew look confused at the graves, because all there was was a line of cement with markers over there. Said nephew assumed we were standing on the bodies when when I looked at their birth/death dates it turns out each one never lived past a year so their bodies fit under the grave markers.

Then I learned through looking at my grandmother's family plot that my pawpaw, her husband, had a first wife and an adopted son, both dead. The son died at 7 years old. mother said from Leukemia. Wife died a month after, mom said it was a blood clot during surgery. I don't understand how that man could keep going after losing his family within two months.

True

“In medical care, dignity is the first casualty.” (Kussin, unknown American physician)

Mine was lost at 5 when being forced to have a male doctor examine my privates despite me screaming no, that I wanted a female doctor. Neither him or my mom cared, ranting the "We've seen so many" line, but that did not console me and I fought, and fought hard until I was captured, forced down and touched with covered my vaginal area with burning cream, assuming I had some sort of yeast infection when in fact it was the very first hint of IC.

I remember it. That means it was traumatic for me. Children REALLY need parental advocacy.. this incident has stuck with me for a long time.

The Winter Flare

I don't know how much the temperature dropped. All I know is that last night things were warm enough to have the air conditioner on for awhile. I wake up and notice my boyfriend has out the heat on full blast, and this is a guy who finds 70 too hot.

I do my daily chores and find it it feels kinda chilly. Usually I get a 4 hour break from pain right after waking up. Today wasn't like that. Pain and burning from the start, I took all pain killers and my eyes are terribly dilated but I still hurt.

My Grandmother just died. Original plans was wake on tomorrow, which I could attend. Now they've moved everything to Tuesday. I have school on Tuesday. The two events happen at different times, but I'm flaring and I only have a 4 hour break. I must choose. Usually I'd pick the funeral, but it is the week before finals where teachers tend to give study guides to the "good" students who came to class. I need that guide. I'll email her and ask for notes and everything.

If that fails then I get to look like a worthless, selfish member of the family because no one understand the type of pain this disease causes.

This related to the spoon theory (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/). I don't have enough spoons for both. I told my mom this and she got very mad and disappointed to the point of making me cry. I DON'T WANT TO BE LIKE THIS. I WANT TO BE HEALTHY. It's not my fault, but that's never the message conveyed from her.

Have Frequency Problems But Want to Watch a Movie?

Rather you have IC or not, Frequency is a common problem. Not for me; my symptoms are pains and spasms, but for anyone with frequency and wanted to watch a movie at the theater this website tells you the dullest parts of the movie to leave at!

http://runpee.com/

Winter is my enemy

During the warmer months I wake up with no pain. Now after first urination everything is sore and feels swollen then generally declines until its time to go to the bathroom again.. then if I haven't doped myself up enough it'll start spasming and I either:

1. Attach myself to a heating pad
2: Nuke my system medicine and go to sleep

I have one last final paper to write for school and that needs to be done in 3 hours before spasms set in. Tomorrow I'll have to start proof-reading everything. I'm not sure how I'm going to make it to school after this week with everything going crazy. I'll need all my meds and will have to find a driver.

Flare

Day before thanksgiving, flaring. Meds aren't working entirely. Took everything but soma and heating pad. Not eating well.

Update, patient rights, violations, PTSD in children after medical procedures

On my second pack of cyclosporine. The second blood test hurt a little because the lab had to use a vein that I wasn't focused on when putting the lidocaine on. Some was on it, but not the glob it needed. She's a nice lady and it was fast. Now I only need bloodwork done once a month.

November is usually my worst for pain. In Louisiana the weather changes drastically. It'll go from 80 to 30 back to 70 and so on, really messing with a lot of people
s chronic problems. My diabetic friend's pancreas started spasming bad which we also assume is the cause.

Nov. 15th of last year was when my huge IC flare hit and never went away. This is what lead to my heavy use of pain medications because before that I only needed some benedryl and the diet and I'm not sort what happened other than the weather completely destroyed me.

So far I haven't missed classes. This week is final paper week so I'm busy trying to get through them in case a really bad flare does hit.

I hope to God that this is the cyclosporine helping me and I will be able to finish school, only to take more webcourses so I can be a transcriber since it appears I will be too disabled for a regular job for a long time. What I really want is to teach, but that won't happen with IC.

Onto another subject: I have a great fear of doctors since my mom never advocated for me. She'd pick one place and stay with it regardless of my feelings. I was born with a lazy eye. First doctor tried glasses to strain my muscles to see if that worked, second used an eye patch to force me to use that eye, and finally they just did surgery. All it really did was make me look "normal" but my eye function is useless except for peripheral vision. It was a very painful and traumatic event for me. Everyone of them used dialation eyedrops which felt like acid to me. To this day I can't go to an eye doctor, or even have someone try to put on makeup around my eyes without me squeezing them shut. I can't have the glaucoma test, because my eyes close without my control.

Another incident was the foreshadowing of my IC. In kindergarden one day I used the potty and found I felt like I had to pee very badly even though I just peed but nothing would come out, so I went to my teacher crying and she called my mom. It was expected to be an UTI, but nothing showed so the doctor wanted a physical exam. The problem is that I am female, he was male, and I was always told it was okay for me to not let anyone touch my private places if I wasn't okay with it.

I wasn't okay with it. I wanted a female doctor. I cried and pleaded that I didn't want this scary man (who was also responsible for my vaccinations, making him all the more scary) to touch my private parts because they were private. Instead of getting a female, they held me down and he touched me all down there and put this nasty cream all over the place in case it was a yeast infection. It burned and didn't help my symptoms.

Thankfully I felt better after a few weeks and nothing happened until I was a bit older, old enough to NOT tell my mom about this since she never advocated for me. I used the azo pills and the pain would go away. It happened about once every 2 months after going to the bathroom, they were spasms but I didn't know. I just knew not to say too much or bad things would happen to me against my will.

I just know I'm very thankful that the full blown IC waited until I was an adult. The diagnostic methods back then were even more barbaric than they are now and there was no way I could have mentally handled a scope going up me without GA. I'm messed up as it is, but that would have blown me over the edge, and so I am for advocating kids right to their own preference for healthcare. No one doctor does one thing the same as others. Parents must shop around for their kids, otherwise PTSD will develop. The perfect doctor is out there for everyone, but most people don't care if a certain procedure would hurt a child way more than adult who actually consented to it. Forceful penetration of the urethra or vagina, even for medical reasons on an unwilling child is rape. There is just no other definition for it.

I am across this site and it pissed me off so much http://patientmodesty.org/modesty.aspx

Pretty much it shoes the abuse hospitals will put you through if you don't fight. There's nothing silly about a rape victim, or even just a very modest girl, refusing a man for a pelvic exam. Routine Pelvic exams in general sound like a sack of crap to me. As an IC patient, I need it done, but for girls just trying to get birth control it involves no patient consent because there is no choice. It's a carrot on a stick, and sickeningly most women are okay with this. "Better safe than sorry." It is, unless you have severe emotional issues towards such things. Only you know your sexual history and risks of cancer. Sometimes they even force virgins into it, which is humiliating and often painful, and akin to a first sexual experience if the hymen breaks except its not with someone you trust or love, just a cold sterile thing force into you to receive the pill so you won't get pregnant we you try to "re-lose" your virginity. Too bad someone else already had their fingers up you. Thankfully at the age of 16 I knew what was going to happen if I was placed on the pill for acne, especially since I was dating, but I was also still a virgin. My mom pressured the doctor into putting me on the pill and I flipped out to the point that he forced her out the room. Me and him decided that I shouldn't be on the pill. Story closed, and I for the first time in my life advocated my bodily autonomy.

A few days ago I came across a post of a mother who's 3 year old daughter needed a VCUG done. This is where they put in a catheter and fill it with idiodine so they can x-ray to see if there's kidney reflux. Problem is you have to be awake, because you have to piss all over yourself after the dye is put in so everyone in the room can stare at you while you pee yourself. Now imagine going through this as a 3 year old, with no pain killers except maybe lidocaine, which works okay with small needle procedures, but must painfully be injected into the urethra in the first place and won't stop the horrible sensation of the catheter ripping past the child's spincter because it is a CHILD. Children cannot follow the order to relax to let it pass through. Even I couldn't. The cath burns upon entering, causing clenching, and a child will fight it. I've read accounts of adults who had it done as children and they can't even get pap-smears anymore and would rather die than have someone touch that area again.. the same goes with the IC community. I myself was very close to suicide until I found the doctor who diagnosed based off symptoms rather than the scope, which, they will not put you out for.

It's truly disgusting how patients are treated, but so many give in and even berate others for "walking out".


Wiki on VCUG: http://en.wikipedia.org/wiki/Voiding_cystourethrogram
It's a very impersonal explanation and won't prepare the patient for the pain and humiliation that comes with it. Sadly most recipients are children. Children who are not given proper sedation and can't understand why this is happening to them and why their mothers won't save them.

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Updated 2018: There is now a community on Reddit for those of us with medical PTSD. It was a long time coming.. so few places to find support. Those of you who find this blog, please continue posting here and cross-post there for support. https://www.reddit.com/r/MedicalPTSD/

meh

Not feeling great today. I wouldn't call it a flare, but I have the urge to urinate despite nothing being there and it especially gets worse if I move.. I have things to do so can't afford to tether myself to a heating pad all day.

Is it working?

I'm not feeling great at the moment, but I wouldn't say I'm flaring. In fact I'm surprised I haven't had to knock myself out yet. We had a sudden cold front and I went all day without going to the bathroom due to very bad timing and school. I expected horrible retribution by my bladder, but it never came.

Is the cyclosporine already working? I sure hope so. I like this "living life" thing and hope it sticks around.

1st day

Yesterday was my first say taking the cyclosporine. Nothing bad has happened. I was expecting some nausea from it or something, but no, I don't feel any different.

I've done it

I've just taken my first dose of cyclosporine. It is a gel capsule that tastes like butt. You'd think a capsule at least wouldn't taste like butt, but oh well.

I'm a senior major with only 3 classes to go to graduate. I haven't been able to take the final on-campus courses I needed because of IC. If this can make the pain tolerable then I can graduate next semester.

My hopes and dreams is to continue on to get a master's in English and work as a student teacher during this time so I can know if teaching is the field I really want to go into. After that it's all up in the air. I could teach here, or go abroad like I've always wanted to. I have the motivation and confidence to make these these happen, but IC took it all away from me.

If this works life will be wonderful. If it doesn't, then I'll have to keep my head buried until a true cure comes out.

It begins

As I type I'm in a mild to moderate flare. I've taken valium, ditropan, and soma to try and stop the pain. It's made it bearable.

I just received the cyclosporine and I will start taking it tomorrow. One of the side effects happens to be cancer. This is some serious stuff. I have to have my blood pressure checked weekly and my blood checked monthly. I'm afraid of needles, but the initial blood draw was easy since my Dr. sent me some lidocaine to numb it before hand. I felt nothing more than a brush of a finger.

And so will this cyclosporine lessen my symptoms??? I sure hope so. I want to continue to graduate school and be a student teacher.. something impossible to do at the moment with my IC being as bad as it is.

It begins

I am a 23 year old with interstitial cystitis, a painful and debilitating disease that feels like a constant, incurable UTI. My symptoms started at the age of 5, but were very minor and not much of a nuisance. Occasionally I'd flare maybe once every 4 months for a few hours, but not enough to get me to go to the doctor. It was probably best that way. Back then things were way more brutal in regards to diagnosis methods, and few doctors believed children could get it.

I've been on all sorts of meds for this thing. Valium, Soma, Ditropan, Utira-C and permanent anti-biotics for the infections it's caused. I'm about to start on cyclosporine, the drug given to organ transplant patients which weaken the immune system, given the theory that my IC symptoms are caused by my immune system making too many cytokines -- the things that cause swelling and pain at an injury site. It's not an auto-immune disorder, it's an immune disorder since technically my body isn't attacking itself, just irritating itself to very painful proportions. Since IC usually starts after some trauma to the bladder -- mine was after a severe UTI -- it's a feasible theory and so far cyclosporine has had good results. Side effects I've heard of can be vomiting, or just feeling sickly.

My problem? This medicine requires monthly blood tests and I'm terrified of needles and doctors in general! So you can imagine how hard this disease has been for me. But if this medication makes it so I can live like a normal person again, finish school, and get a job then it'll be worth the needles. At 26 I get cut off from my stepfather's insurance and then I'm up the creek without a paddle if my symptoms remain ass uncontrolled as they are now.