What is Interstitial Cystitis?

What is Interstitial Cystitis?


Interstitial Cystitis is the worst bladder infection you've ever had, except no bacteria is present, there is no cure, many foods make it worse, and separate treatments have maybe 1/3 of a chance of helping. The only true "treatment" is treating the pain, as its usually the only thing that will work. Even patients who've had their bladders removed still experience the pain. Doctors don't know what causes it or how to get rid of it but have many theories.



Need to find a doctor in your area who actually knows how to deal with IC humanely? Click here.

These are the new guidelines for diagnosing IC. If your doctor isn't using these then I suggest you find a new one who keeps up to date.

You can find the IC safe collaborated recipes between me and my step dad here.

Friday, December 7, 2012

Medscape Medical News Vulvodynia and Interstitial Cystitis: Causes of Pelvic Pain

Excerpt:

Editor's note: Although about 1 in 7 women in the United States report experiencing chronic pelvic pain, the causes often go undiagnosed. Surveys indicate that about 15% of working women lose time from their jobs because of pelvic pain, and nearly half say it adversely affects their productivity.


From: Medscape (http://www.medscape.com/viewarticle/773575)

Really good article.

Sunday, November 25, 2012

Somehow, I'm doing fine! (And an interesting localr article in the paper on Pap smears)

It's late November and I'm still working with no fears. The weather dropped significantly earlier this week and I felt nothing. I really, really hope this means I'm done with this bout of IC.. I'd love to get out of retail, and it's the fear of not being able to work 8 hour shifts keeping me in part-time only positions. So far, so good!

Thanksgiving was kinda a letdown though. For obvious reasons. IC patients can't eat anything tasty (my own speculations..). A lot of my family don't want to bother with cooking something completely separate for me, so I just got some cheesy broccoli for my dinner.

Something interesting that did occur today, which I noticed at work, was an article in my local paper about birth control potentially becoming over the counter. The ACOG said that in their opinion birth control should be given over the counter. Is my fight finally over? Of course not. Doctors seem to take forever to get these memos.. and there were a few women defending the annual exams. One in particular enraged me enough to send my own letter to the editor. Basically, she worked for a gynecologist and said women would skip screening completely. Hm.. well.. I'm sorry ma'am, but we're adults and have the right to skip screenings that have nothing to do with the medication we're visiting to obtain. Of course, my letter was a lot more detailed and angrier than that. It read:

I had to throw my two cents in after reading Woods' response. There are many over-the-counter drugs patients shouldn't take if they have certain medical conditions and should consult a doctor prior, but the main retort I wanted to make was against the lines, "Plus, if you do not make them accountable for their annual exams by the pill prescription expiring, then you have another issue of missed Pap smears, thus more cervical cancer."

That's disgusting reasoning. It's okay to ransom birth control pills to make women go to exams? What about men and prostate exams? Should doctors withhold Viagra, high blood pressure medications, or anything of the like to "hold them accountable"? How about dentists? Should we hold other medications for ransom to make sure everyone gets their teeth checked? We're all adults here, please treat us like one and let us make our own informed decisions. A pap smear is unnecessary to obtain birth control, you are not told about the high incidence of abnormal results that resolve spontaneously, negative biopsies and colposcopies, and the pros and cons in general of this exam. Not to mention, on top of it all, the medication is withheld until a woman complies to the doctors demands. How is this informed consent?

As of March the ACOG also said annual Paps are unnecessary [http://www.acog.org/About%20ACOG/Announcements/New%20Cervical%20Cancer%20Screening%20Recommendations.aspx]. I for one would like to follow the guidelines and have one every 1 to 3 years based on my personal sexual history until I reach the age of 30 and then follow the recommendations for that age. Such decisions should take place through a discussion with your doctor about your own personal needs and medical history rather than a dictatorship that uses a one-size-fits-all approach. I've had college friends go without the pill due to their fear of the exam and end up pregnant. Women who have been abused in the past also may have great difficulty in going through with the exam, and many young teens opt to go without the pill due to their own fears of the exam. Friends in other states have never heard of the practice we have here of requiring a pelvic exam to get the pill and are shocked when I tell them about it.

Oh, and to finalize my viewpoint on this.. there are already ways around the annual exam while still obtaining the pill. Planned Parenthood runs a program called HOPE which provides the pill with no exam necessary. Likewise, just like with Viagra (and not recommended, but I'm throwing it out there anyway), the pill can be ordered legally from the internet with no hassle. I still see my doctor, but that is

Sunday, November 4, 2012

Positive Thinking is Negative

The weather has been steady so I've been fine.. completely normal. I keep a 9 day forecast on my desktop at all times so I can request that day off if there is a cold front.

That aside, I came over an interesting post on Reddit. It was about a guy asking advice about how to make his girlfriend with cancer feel better. The most up-voted comment was along the lines of don't tell her to be positive.

The exact quote was, "Do not, I repeat do not, tell her to keep a positive attitude. Instead, show her that whatever she's feeling (fear, anger, frustration, etc...) is OK and you can handle it.

I recommend this interview and book: http://www.npr.org/templates/story/story.php?storyId=113758696"

Tonight, after texting my mom for a bit and her telling me to look for a better job with my response being I don't want to burn bridges by getting a great job then flaring so bad I have to quit in the first month, she told me, "don't be negative."

Is predicting something that happened every year for the last three years being negative or just being practical? It may not happen this year (or to be more precise, it could be a mild winter since its already demonstrated that it WILL still flare in cold fronts) and I'll seem healthy.. but that's the problem with invisible illnesses. Next winter I might not be so lucky.. and then what? Is it my fault because I wasn't positive enough? I feel this is a problem with ANY chronic health condition. Saying "stay positive" or "don't be so negative" is like saying, "Stop being a pussy. If you were stronger then you wouldn't be sick."

The thread also discusses how so many friends abandon you when your sick because they don't know how to handle it.. and how its mostly an age thing. It was a really interesting read, so I encourage you to click on the reddit link above since it'll send you straight there.

Friday, October 26, 2012

Trying to Track Which Pressures Set it Off

I'm spasming from the get-go this morning. The Pressure is still 29.99 in but is listed as (falling). It is 71 degrees outside, so like I said, nothing to do with the actual temperature.

EDIT: It is now 61 degrees a few hours later. The pressure actually rose to 30. I'm confused and in ample pain. All I can say is I know it has to do with temperature drops but that's about it.

Thursday, October 25, 2012

Cold Front Incoming

There's a huge cold front coming in. As of right now it is 71 F, and Rainmeter says that in two days it will be 43 F.

Current pressure is at 29.94 in.

I'm doing okay as of right now. I'm off for the next three days thankfully so I can see what happens and what I must decide to do about my work schedule for the rest of the season.

Saturday, October 20, 2012

Cold Fronts are Starting

Last week I had a bladder infection and now I'm in pain because the weather just dropped by twenty degrees. I have a 7 hour shift tomorrow and with someone on vacation I'm having a longer work week than normal but don't think I'll be able to hold up unless the weather steadies out. My workplace doesn't make accommodations for wheel chairs and walking turns very painful for me.

I'm already tempted to put in my two weeks notice, but then how am I going to live if I don't 'tough it out' so I'm not 'living on your dollar'?

If it is another infection then I'm screwed, as that would mean its now immune to yet another anti-biotic and I'm already allergic to all with sulfur in it. Last year it became immune to macrobid. I'm positive its the IC symptoms allowing the infection to return. All summer I didn't have a single problem and lived a normal life.

Tuesday, October 9, 2012

Today I woke up to foul smelling urine and quite a bit of pain. I immediately called my doctor to drop off a urine sample and it came back positive. I'm in immense pain on and off throughout the day and had to miss my first day of work due to IC. If this damages my bladder lining it will not repair fast enough for me to keep my job. I hope I caught it early enough.

Pray for me if you can. I was just getting settled in and feeling victorious over my lack of flares.. now I'm in a huge one.

Tuesday, October 2, 2012

Interstitial Cystitis Returns

My symptoms were so minor I believed I was going into remission, or at least the cold fronts wouldn't do much harm to me. You couldn't really call what passed a cold front because we kept the AC on, but my body certainly felt it. I'm taking my heaviest meds and sitting on a heating pad in hopes of stopping it from becoming worse before work, and it's completely drained my motivation to do any of the activities I usually enjoy.

All the hope I had earlier of lasting a whole year at a job is basically gone now. If such a minor front could hurt me enough to distract me from my favorite activities, then how bad is it going to be when the major ones start rolling through? I know I positively won't be able to work the 20 hours a week that I do now. As a cashier, there's a lot of walking and standing involved. I already asked about accommodations for a wheel chair and all they had to do was point at the space in the stall.

There's only two registers in one stall, and it's not wide enough for a wheel chair or short enough for one. They could possibly let me sit on a stool, but half of my job is walking around straightening up product. In short, once I get that bad, I think they'll let me go.

My mom has already proven to be very disappointed in me and on the verge of labeling me a hypochondriac from last year despite me being fine this whole summer. If I did lose the job I'd face verbal abuse all day since she works even less hours than I do.

I know stress makes IC worse, but how can I not be stressed in this predicament? If I just had someone to say, "It will be alright. Just do what you can," my stress levels would be so much lower. My family is also saying that I'm "projecting" what will happen to me and so it will happen. which sounds more like they think magic is real to me. I wasn't thinking anything bad was going to happen until that surprise cold front hit and I had to run to the bathroom every two hours and had the worse day at work yet since we only have two people working there at a time, making bathroom breaks guilt-filled.

I wanted to go back to school for teaching since I was doing so much better, but I don't think that will ever be possible. I'm going to have to look into web design or some other stay at home job that isn't a scam just so I don't feel worthless all over again.

Thursday, September 20, 2012

Hoping for Future Prospects

There isn't much to say still. As is the nature of diseases like IC, you don't complain much when you feel better. I did have a small scare a few weeks back during the first major cold front. For about five hours I was in some pain, but the meds took care of it. We've been having colder weather for the past week and I seem to be doing alright.

Now I just have the generic worries of someone my age for now.. with the added stress of not knowing when my life may be randomly shut down again. I'm too afraid to hop to a better job because I don't want to ruin my chances of getting there again if I have to drop out of there after only a month of working there because my bladder decided it was no longer okay with the winter. Since that makes me feel stuck at my current job, I'm a bit bitter towards it by no fault of its own.

One thing I would like to do though is get into web design. I already have some experience with CSS and HTML, but not enough to do it as a living.. hobby wise I can produce most of what I want. I would hope it'd be enough to let me work from home so I wouldn't have to worry about my health every year and rather or not hopping jobs would be a worthy risk. Even though I'm not taking so much medicine now (although I should be) money's still very tight here and losing my job due to the disease could be disastrous for us.

I'm not sure how to get a foot into web design or anything: if classes would be better or if self teaching would be better..? Then that still leaves the issue of getting some anonymous person online to pay me, another anonymous person online, to do the job. It just doesn't seem very stable.

Everything else seems well and I should be enjoying this period of normality, but the whole thing of my life possibly being shut again down is just hanging over my head. I really want to save money to prepare for that but I also need to pay off the bills I built up while I was sick.

Tuesday, August 28, 2012

Toxic Atmospheres

I'm still okay. Only hormones really seem to be hurting me, and it's not crippling. Of course, it's still warm out without major changes in the temperature.

Just thought I'd let the internet know that my mom has figured out what causes IC. You see, I'm in pain during the winter a lot because I don't "Get out enough." That makes a whole lot of sense since the pain keeps me inside-- oh wait..

Even if you're knowledgeable in whatever disease you have, know the cause, it's name, and treatments your family, friends, or perfect strangers will still assume they know more about the disease than you and offer unhelpful, and often, insulting advice.

Tuesday, July 31, 2012

Working a job and trying to have a life with IC

Thing about chronic illnesses and support groups is that when a person starts to feel better they no longer visit the group/write about their illness, and so I haven't been updating much though I assure you I'm still around.

There are times during the day when I can't even feel my bladder, which is amazing for someone with IC. I'm not entering remission though. We had a 20 degree drop from high 90s to 70s after a storm and I hurt a lot.. meaning barometric pressure still will control my life. I still have no plan for winter but to save up as much as I can in the summer (which isn't going too well via credit card bills from last winter).

It is clear I can work during the summer. I haven't missed a day yet for any reason nor did I suffer needlessly at a job, my IC was handled by meds. Though sometimes I'm about to fall asleep at work due to meds, at least there is no suffering. I'll stick with it for as long as I can, but I must be honest with myself and fully consider the possibility of not making it all winter. There is something I can get to allow a large amount of days of excused absences via note from doctor... forgot what it was called, but saw it on the ICN. That could possibly help me get through the winter.. but my poor co-workers are already on a skeleton crew as it is. I'd hate to do that, unless they really wanted the hours, which I'd be more than happy to handover. It all comes back down to corporations not wanting to pay for overtime..affecting those of us who are sick and would like to keep the position through needed downtime due to disability.. A few of my workers kept mentioning they wanted more hours instead of being given bare minimum to keep them at part-time status and without benefits..but its cheaper just to add more part-time workers..

Friday, June 22, 2012

A job!

I was hired at a small retailer thanks to a few connections (education doesn't matter in this job environment, it's all about who you know as long as you have a diploma or GED). Work is manageable for now and part time but I'm very worried when the cold fronts start rolling through. I don't think I can stay on my feet all day while flaring. For now though, I'm doing fine but busy (forgot my mom's birthday). And apparently Dr. Drew dropped the ball when an IC patient called in. I don't catch the channel nor did I watch it yet, but there's a lot of upset folks on our support forums.

Saturday, June 9, 2012

Mourning for patient's rights

In the 50's and 60's you had to have a marriage license to get birth control. Your husband had to consent if you wanted your tubes tied because he might want more children. Doctors told you nothing about your body and some would completely refuse to fill the prescription. Abortion was done in Europe by rich women whereas the poor squatted over toilets or went to someone who wasn't a professional. This led to internal bleeding, perforated intestines, infection, and/or death. Then you could be tried for murder. This is reminiscent to what is going in on Michigan, and reminiscent of what I and other women in the backwater states must go through to get birth control. No amount of citations or sources (some from the American College of OB/GYNs) will change my doctor's mind on "mandatory" vaginal probing just to get the pill. I don't think we've moved that far ahead. What do I do? What do we do? How do social conservatives even have wives? How do you fight someone with so much more power than you? From National Womwn's Law Center:
"My grandmother was a nurse during the first half of the 20th century. She told me quite a few stories about being a woman in America during that time. She told me about being in nursing school and having the head nurse conduct evening meetings to quietly amend textbooks chosen by the male dean and board of regents. She gave me one of the medical book with the carefully lined through passages with penciled in corrections. As an adult I checked all of the corrections made by the head nurse regarding pre-natal and post-natal care of women and children. They were accurate and in use today. Grandma told me that men could not be countermanded and that doing so was as foolish as tilting with a windmill. In her day, women of knowledge and conviction simply worked around them as best they could for the most part or made changes through them. She gave me an example of a very powerful and influential obstetrics doctor she had the misfortune to work under in 1908 as a young nurse in school. He refused to use a solution of carbolic acid to cleanse his hands between post-delivery internal examinations of his patients (he was old school). He had a very high mortality rate among his patients as a result, she observed. She and the other nurses would systematically hide as many of his patient from him as they would during his rounds. Outrage and determination filled her voice while discussing it, even after 60 years. She told me of a number of cases of women forced to seek illegal abortions out of fear and desperation, living children that couldn’t be fed with health issues that couldn’t be addressed, and husbands that had died or deserted their families. She told me of other nurses and doctors that she knew that chose to perform illegal abortions on kitchen tables. She told me details on the countless cases of women she had cared for that had died or were “made barren” while attempting to end pregnancies. They were even beaten or shamed and ostracized from communities. I asked her if she had ever performed an abortion. She told me about a neighbor in the 1930’s that had sent one of her six children to my grandmother’s house one evening to fetch her. My grandmother found the woman in her bathtub covered by a blood soaked robe. The neighbor was weak and crying that her husband John was threatening to leave her and that she had had NO CHOICE. When she pulled the robe back, grandma found a coat hanger entangled in a towel partially bunched between the woman’s thighs along with perforated intestines that were distending from the woman’s vagina. You don’t need the gory details and this is not an uncommon occurrence in the 20th century. The woman survived. My grandmother ended the story with a recounting of how she had fixed the the little red wagon of the husband, John. She never suffered fools gladly and had balls of steal as did many women of her generation. I admired and was comforted by that as a child. She was pro-choice and pro-contraception without restrictions. She said that eventually the ERA would be passes because women and men of reason and compassion would prevail – but sadly, she feared, not in her day. She crossed over in 1978." -- Crystal Beach, FL, Behavior Analyst
I would have to drive two hours every time I need a refill of birth control (hard for an ICer, not to mention we need the hormones regardless of sexual activity or not -- most of us have problems having sex but according to certain people we're all sluts for just having this disease)or else face non-consensual, coerced, uninformed vaginal probing. Even if results came back abnormal for a year, I would do nothing about it for three years, the recommended screening schedule, and so THERE IS NO POINT, but my GP would still force it. I can't really get a straight answer on if annual exams are needed when you have IC. I know its generally a good idea, but I'm already sick, it hurts, and I've only had one sexual partner in my life (but don't worry, evidently I'm still a slut). My friends in California are shocked by this, their general practitioners don't do this there. So much difference from state-to-state. We're still having barriers to birth control.. we don't even need to look back at those stories, as horrid as they are, because we're still struggling for access while being able to make our own informed decisions. I also feel this issue is swept under the rug and that's what hurts the most in this women's right movement going on. No one questions their doctor, ever, and as an ICer I know that's the worst route you could ever take for your mental and physical well being. Another story on the site states of how one OB never washed his hands even though nurses begged and he had the highest mortality rate so they had to start hiding patients from him.

Wednesday, May 30, 2012

Been awhile. I graduated and am still looking for a job. I need to work in case I need disability, but not even Wal-Mart is hiring here. So I'm hoping some place will like my application and call me.

Friday, May 11, 2012

Interesting News, Interesting Possibilities of a Cure for Intersitial Cystitis Pain and Uregency.

Japanese studies have shown that hyperbaric chamber therapies greatly reduce symptoms of IC. I've found that it would cost me $1100 per session but I'll need up to 15 for any long term results. Therefore, $16,500. I'm unemployed and on the verge of being labeled disabled. Thanks American healthcare. Anyway, I questioned if diving to 66 ft (the pressure that's used in the chambers) would have the same effects. The chambers use 100% oxygen, divers only use 21% due to oxygen toxity, so I asked my uro if she thought it was the oxygen or the pressure and she replied she thought it was a combination of both since patients who tried oxygen bars had no relief. She also gave me this link. They're started studies in the U.S. now: http://www.medpagetoday.com/HematologyOncology/ClinicalTrials/3419 I feel this is the treatment I've been waiting for. If only I can afford it.

Friday, May 4, 2012

Losing the job market and depression.

It's not just pain that can lead to depression, as everyone knows. The feeling of helplessness when no one will hire you can destroy a sense of self confidence. I only keep mine because I am a brutal activist for patients and women's rights. I care less for myself than others. I'm trying to find a job so hard right now. My boyfriend can't find any upward mobility. I was so eager, I was certain Petco or Petsmart would take me due to my experience with rehabilitating wildlife, but all companies want these days are experience and not degrees, know-how, or intelligence. I can't start at a fast paced place like a fast food restaurant. Wal-Mart has destroyed all our small town operated retailers.. and that store hurts my eyes alone not to mention everything else. My brother is manager of the only lumber and house supply store in the area, so can't even try there. Libraries are filled.. I keep telling my boyfriend we need to move. This town and state is toxic.

Monday, April 30, 2012

Tips on IC Pain and Pelvic exams

"The bottom line is feeling in control, which is an important part of healing. "IC and all of the pain syndromes that occur in the pelvis can make you feel out of control. But you can feel in control by choosing your healthcare providers—choosing YOUR team." -- Dr. Metzger Well, mine never seemed to try to be gentle with me even after telling her a million times to be gentler to me than other patients.

IC and time management

The hardest thing to me right now is time management. Either I hold my urine in and get things done then hurt really, really badly when I'm done with work for the day, or I go to the bathroom as needed and suffer mild to moderate spasm pains for up to an hour after each time, not ideal for a job setting. I can't even be productive with it in a home setting. Today I found sources for an up coming term paper, had to do a 40% water change to my aquarium, and had to clean the gerbil cage. This is just the stuff I do for *me*. Next there was towels and garbage cans. The Aquarium gave me a lot of trouble so it was 6 hours until I got to go to the bathroom. Thankfully there are heating pads here to help, but I wonder what I'd do at a job? This is why I'm hoping for part time hours. I did submit my resume to four places. Guess I'll keep my fingers crossed. There's no way I could survive the fast pace of a restaurant or anything involving walking/pelvic jostling. Not unless they want an employee in a wheelchair, but then they'd find some other reason to fire me for. Current news is nothing much. I did find a place that can batter fry shrimp in plain flour. It comes with the spice taste without the spice (or at least not enough to hurt me) and it feels like I'm dining at the world's most expensive restaurant. It's pretty great. Also I've decided to start getting my birth control pills from Planned Parenthood through their HOPE program, which means I don't have to get naked to get a pill just like people in all other first world countries who can get over-the-counter pills or just have to let a nurse check their blood pressure. While I know it's important, I've decided to follow Northern Europe's guidelines of every 3-5 years. It's a slow growing cancer. Most who die never had it checked, not that they were too late (unless there was symptoms). Not sure why the doctors here don't understand this or read the latest guidelines. Well, it's a weight off my back. Like all other ICers know, pelvic exams can really hurt not to mention my own personal sense of violation one once is done against my will due to coercion to get the pills I need to stop period flares. That's no relationship I'd put up with a man, and so that's no relationship I'll put up with a doctor. ..also.. was hoping to make some pocket change from this. But the certain affiliate I'm using hasn't so much as given me 10 cents since starting this blog. Page views should at least be worth something, right? The advertisements aren't even IC related half the time.

Friday, April 27, 2012

Traveling with IC

Oh dear, Blogger has changed formats. Well, it's been awhile. I still have spasms, but nothing like during the winter. Meds and heating pads control it so I can be productive at a desk. Tomorrow I am stepping out of my comfort zone and going to take part in a protest against the War on Women. It's something a college student like me is expected/allowed to do. What do ICers need? Hormonal birth control for flares. What are certain politicians trying to stop? Hormonal birth control. As an ICer I will go and speak for us. I think things should be okay. I'm bringing emergency pack of hand warmers for heating pad substitute, my meds, and a Nintendo DS for the ride. Oh, and water, lots of water. I think I'll be okay with these things. So far on my hour commute to and from school these things have helped me greatly. I also have a wheel chair for dire pain situations. These things make me able to travel. It's not impossible... but it does depend on your state. I don't think I'd have the courage to do this during winter months when I flare up. Or maybe I would considering the importance of this. Glad it's in the summer. Ah, and I've found that the local Planned Parent hood here doesn't require pelvic exams for birth control. This makes my longing for informed consent and my IC happy.

Saturday, April 14, 2012

Apologies for lack of posting

Apologies for lack of posting. It's term paper time, so I'm preoccupied with freaking out, graduating, and finding a job that won't stress my bladder. I live in a small town where the only places willing to hire someone with no work experience is retail or fast food and walking jostles my bladder and isn't that great. I could get away with being a cashier maybe, but Wal-Mart eats peoples' souls. And that's about all we have in my tiny town. My brother is manager of the local home repair shop, so that's out of the question. Other than that is the dollar store and some clothing stores (I'm not a fan of clothing. In fact, I couldn't even tell you what size I wear). Radio Shack demands experience. I need to work a certain quarter per year to get disability, but there's just really no options here for me. The library isn't hiring though I put in an application anyway and the Newspaper office practically laughed at me. I could tell my the look on the receptionist's face that I had no chance. They weren't hiring at the moment anyway. I guess I'll need to search in surrounding areas.

Thursday, March 29, 2012

Heating pad blotches now have a name -- erythema ab igne

Erythema ab igne. Do not ask me how to pronounce it, but typing it into google images will show you the all too common images ICers see on a daily basis on their inner thighs due to heating pad usage. However, the ones covering the entire leg likely was caused by something other than just a heating pad.

"A middle-aged man presented with intractable abdominal pain from chronic pancreatitis secondary to excessive alcohol use in the past. The pain was unrelieved by thoracoscopic splanchnicectomy and regular opioid analgesia, and he had been using a hot water bottle for years to obtain relief.
The reticular, nonblanching hyperpigmented discolouration of the skin is characteristic of erythema ab igne (Figure 1). This is a useful diagnostic sign in pancreatitis,1 but may also be encountered in patients with abdominal neoplasms such as gastric and hepatic tumours.2
It can occur at any site exposed repetitively to infrared radiation in the form of non-painful heat, such as the shins of old people who sit in front of fireplaces in temperate climates or the abdomen and thighs of kangri (a small portable earthen firepot) users in the Himalayas.3
Erythema ab igne is not always an innocuous cutaneous feature as the mitogenic effects of heat can lead to thermal keratoses and skin cancers; mainly squamous cell carcinomas." -- (http://journal.nzma.org.nz/journal/121-1276/3124/)

Evidently it can cause cancer. But, eh, not like we have much of a choice. This fellow had bad stomach pains. This is how you know your patient isn't faking it.

Wednesday, March 21, 2012

Is Cyclosporine the cure to IC?

I can't say either way. It turns out my symptoms are from pelvic floor dysfunction, which comes packaged with IC. So, by the time I started the Elmiron had healed my bladder. There is still a lot of enthusiasm for this therapy, and should my IC return I wouldn't hesitate on using the medication again. I say go for it. I had no bad side effects.

The cyclosporine was the main purpose for this blog, but I'll continue dictating life as an ICer. I have pictures of the leg blots left by our heating pads I wish to give to my Uro for free use as well as to the ICN so people won't freak out when they see them. My uro said it doesn't harm you, it basically makes you look ugly in a place most people will never see. I plan to cover mine with a tattoo if I can ever defeat this disease.

I used my wheelchair today at school for the first time. Freak cold front came through with the storms. It was an interesting learning experience. Wheelchairs = hard outdoors, but fun when going downhill (and I'm immune to the flooding in my lower-than-ocean-level-city. 6 inch puddle coming up? No problem! ). I kinda used it as a skateboard, using a foot and my hands to help out unless I was hitting a puddle. The issue is the jostling walking causes and not having cushion under my tush, but it solved both those issues and I could still use my legs to help push along the uphill areas. In class it was much more comfortable to my bladder than hardwood straight backed chairs. I could recline to my hearts content.

It's also a great arm work out, which I badly need.

I haven't been posting much because I've generally been feeling better plus school is getting very hard. It's my final semester. I'm worry what I'm going to do for a job once I get out. I need to work summers at least if I hope to claim disability if things turn out for the worse and I always need a plan A, a plan B, and a plan C. Right now we're trying on starting a home computer repair business.. but when you live in a rice patty.. there's not much of a customer base. I could probably make more selling the animals in my yard since PetSmart seems to carry the majority of them as pets (red eared sliders, green anoles, gardner snakes, etc).

Tuesday, March 6, 2012

TRP A1 Channels in Bladder Cells

Along with cytokines being a potential cause of the pain in IC my Urologist informed me that the new buzz is the effect of TRP A1 Channels in Bladder Cells on sensory neuropathy. That's a lot of big medical terms, again, bringing up my case about the layman being helpless to the doctors.

I found a nice site on Google that would lay it out for me, but after the first paragraph it said:
To read this article in full you may need to log in, make a payment or gain access through a site license (see right).


Injustice. This leads directly to why the poor has the worst health.. its not they just can't afford the medications, but they don't have either the education, the help, or the resources to research their options for themselves and are stuck playing Russian Roulette with doctors. The elderly fall into this pit too because of their "the doctor is always right mentality."

Thankfully my school has some articles up about it. Here's a few abstracts:

" • The pathophysiology of lower urinary tract symptoms (LUTS), detrusor overactivity (DO), and the overactive bladder (OAB) syndrome is multifactorial and remains poorly understood. • The transient receptor potential (TRP) channel superfamily has been shown to be involved in nociception and mechanosensory transduction in various organ systems, and studies of the LUT have indicated that several TRP channels, including TRPV1, TRPV2, TRPV4, TRPM8, and TRPA1, are expressed in the bladder, and may act as sensors of stretch and/or chemical irritation. • However, the roles of these individual channels for normal LUT function and in LUTS/DO/OAB, have not been established. • TRPV1 is the channel best investigated. It is widely distributed in LUT structures, but despite extensive information on morphology and function in animal models, the role of this channel in normal human bladder function is still controversial. Conversely, its role in the pathophysiology and treatment of particularly neurogenic DO is well established. • TRPV1 is co-expressed with TRPA1, and TRPA1 is known to be present on capsaicin-sensitive primary sensory neurones. Activation of this channel can induce DO in animal models. • TRPV4 is a Ca2+-permeable stretch-activated cation channel, involved in stretch-induced ATP release, and TRPV4-deficient mice exhibit abnormal frequencies of voiding and non-voiding contractions in cystometric experiments. • TRPM8 is a cool receptor expressed in the urothelium and suburothelial sensory fibres. It has been implicated in the bladder-cooling reflex and in idiopathic DO. • The occurrence of other members of the TRP superfamily in the LUT has been reported, but information on their effects on LUT functions is scarce. There seem to be several links between activation of different members of the TRP superfamily and LUTS/DO/OAB, and further exploration of the involvement of these channels in LUT function, normally and in dysfunction, may be rewarding. [ABSTRACT FROM AUTHOR]"


It sounds like its theory crafting for now, or at least, something difficult that will take time looking into. I could find nothing relating directly to IC and TRP A1 Channels, but I did find and article titled, "Autoimmunity to Uroplakin II Causes Cystitis in Mice: A Novel Model of Interstitial Cystitis."

The abstract is:
Abstract: Background: The pathophysiology of interstitial cystitis (IC) is unknown. Deficits in urothelial cell layers and autoimmune mechanisms may play a role. Objective: To examine whether immunization of mice with recombinant mouse uroplakin II (rmUPK2), a bladder-specific protein, would provoke an autoimmune response sufficient to create an IC phenotype. Design, setting, and participants: RmUPK2 complementary DNA was generated, transferred into a bacterial expression vector, and the generated protein was purified. Eight-week-old SWXJ female mice were immunized with rmUPK2 protein via subcutaneous injection of 200μg of rmUPK2 protein in 200μl of an emulsion. Measurements: Mice were euthanized 5 wk after immunization. Axillary and inguinal lymph node cells were tested for antigen-specific responsiveness and cytokine production, serum isotype antibody titers against rmUPK2 were determined, and gene expression of inflammatory mediators was measured in the bladder and other organs. For functional analysis, mice were placed in urodynamic chambers for 24-h micturition frequency and total voided urine measurements. Results and limitations: Immunization with rmUPK2 resulted in T-cell infiltration of the bladder urothelium and increased rmUPK2-specific serum antibody responses in the experimental autoimmune cystitis (EAC) mice models compared with controls. The ratio of bladder to body weight was increased in EAC mice. Quantitative reverse transcriptase polymerase chain reaction analysis showed elevated gene expression of tumor necrosis factor α, interferon γ, interleukin (IL)-17A, and IL-1β in bladder urothelium but not in other organs. Evaluation of 24-h micturition habits of EAC mice showed significantly increased urinary frequency (p 0.02) and significantly decreased urine output per void (p 0.021) when compared with control mice. Conclusions: Our study showed that a bladder-specific autoimmune response sufficient to induce inflammation and EAC occurs in mice following immunization with rmUPK2. EAC mice displayed significant evidence of urinary frequency and decreased urine output per void. Further phenotype characterization of EAC mice should include evidence for pain and/or afferent hypersensitivity, and evidence of urothelial cell layer damage. [Copyright &y& Elsevier]


But there's no full version of the study. It was released in January, but I like the looks of it. I always said my immune system was a freak of nature. I've been trying, TRYING to catch a cold or the flu for the past two years. Even when I was on the immune suppressant Cyclosporine I couldn't do it!

I guess keep our eyes peeled on the ICA and their reports.

Sunday, February 26, 2012

Back from New Orleans

I'm back from seeing my uro, everything seems well and setup in case of emergencies. However, I swear my GPS is trying to get me killed.

"Turn right."

There is a wall there, GPS.

"Turn left"

I'm on a bridge, GPS.

I did want to go to the zoo since I don't get out much, but though the ticket prices were good the parking prices were not. Have to love those extra charges.. so we get to the ferry, see the parking fee, and we just turn around. My boyfriend wanted to get home before sunset so he could fix his car for tomorrow so he could get to work and I to school. So far the nachos have not killed me. I am eating some rice with salt in it now. So far so good. I also ate pancakes at IHOP. I'm going to slowly do this until I find my stopping point. I'm sure this means I can have potatoes again. I missed potatoes so much.

Friday, February 24, 2012

Nachos are good mmkay? Colds fronts are bad mmkay?

Had nachos for the first time in 4 years yesterday. Only unsafe ingredient was salt. Today I'm in spasms, not because of the food, but because it's Louisiana. This is what the weather said:

"Hey, it's spring! Look at the redbirds and blue birds and how warm it is!"

Then today:

"lol I lied, its winter again. Oh I'm dropping to 40 tomorrow, hope you don't mind"

Moral? Don't live along the gulf if you have Pelvic Floor Dysfunction affected by the air pressure.

Tuesday, February 21, 2012

Mardi Gras

The holiday all students look forward too! I'm drowning in midterms and professors who don't know how to use technology, but today I took the day off to just cook. IC safe gumbo (safe homemade reaux (safe flour browned in microwave or oven), a HUGE pot, a lot of water, and chicken, shrimp, and crawfish with rice. For others of the household I made unsafe, very spicy red beans and rice with sausage and cornbread muffins, though the muffins seemed okay... Jiffy brand.


It was delicious. Even without seasoning. You can still eat well without worry. Just make sure the meats don't have anything else in it BUT the meat.

Monday, February 20, 2012

Internet Friends

My closest friends are miles and states away from me, but we talk everyday through games and Facebook. Some professionals say this in unhealthy, and online friends can never replace real friends, but after a recent catastrophe on Facebook of my family saying I "complain too much" about my pain and I going on a purging spree of those who weren't truly my friends and family members who'll never hear another word from me I realized who my true friends are.

One of them said they got me something for my birthday. I thought it'd be some game item that you pay cash for, usually cheap. I'm like, okay. Well, weeks later a huge box arrived at my door.

What was it?

A wheelchair!

While my community and family dismissed me, my online friends went far and beyond and did what those who should be doing didn't do. My mom gave a away a free chair after I asked for one.

Her reaction to the present? "I made them pity me with all my complaining." Hah. It's a damn good, comfortable, and portable chair that they used amazon gift cards for to get it really cheap. She was extremely annoyed. Said I should send it back. I'm at the point where I've lost all respect for this woman. She has Jackle and Hyde moments. There are times when she brings me IC safe foods in bed, then there are times like those above. I think I broke her bubble of denial. Or perhaps made her feel guilty that it was total strangers (to her) who gave me such a great gift. To you two guys I'm talking about, thanks <3

For science!

I broke my diet. Every once in awhile you need to try to see if your food tolerance has increased any. I ate just a little, so I'm not expecting anything awful. It was regular fried rice from an Asian fast food joint. Likely has MSG in it and onions.. and some spice I couldn't name but had properties of black pepper. If you don't hear from me in two days then things went well. If I reply, it'll be about blood coming out of places where blood shouldn't come from.

Thursday, February 16, 2012

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).

Sunday, February 12, 2012

How to select a pet if you have IC?

There are things to consider when selecting a pet when you have IC. The first thing to consider before anything else is allergies. On the ICN we put our symptoms and meds, and one of the users outs "Fur Therapy" with a picture of her dog under the med section. Fur therapy is a pretty great thing, especially if your insurance will pay to get a dog trained as a helper. I was trying to train our German Shepard to bring towels to the washer so I wouldn't have to walk through the coldest part of the house, but he would just take it randomly drag it somewhere upfront. I guess if it was horseshoes it'd kinda count.

Living single, or with only a spouse would make dog ownership hard if you have particularly really bad flares. You'd have to judge on the regularity of them and how bad they are. Would you be able to let you dog outside every 3 to 4 hours? Having a dog outside on a chain is useless as a therapy animal, and when you want to bring him inside he'll surely need a bath first. My family includes 3 other people, and the dogs arne't really "mine" and stay upfront with my parents. They're also terrified of the bathroom for obvious reasons... b-a-t-h. So they are unhappy to keep me company in a bad flare.

What about a cat? My cat is a bathroom lurker, likely because the dogs won't go there. Problem is I'm allergic to cats. And she's extra hairy. And she sheds so much our hallways look like the old west with tumble weeds, except its cat fur. She was a foster we saved, and this was far before I had IC. Sadly nowdays I have to kick her out the bathroom or else she'll spend the whole time meowing and rubbing my legs and making me itchy on top of everything else.

What about reptiles? They have some friendly reptiles like bearded dragons, but they cost a lot to keep up with. They'd likely stay in the bathroom with you. Snakes wouldn't really do enough to keep you occupied, though they're real easy and cheap to take care of, and turtles are too skittish and need weekly water changes, but friendly lizards are always an options if you can pay and research on how often cage cleanings are needed.

What about rodents? Rats are the best pets I've ever had. They're mini-dogs. When mine escaped at night I'd wake up with them licking my face. Yes, rather than "act like a rodent and chew everything", rats would rather climb into bed with you. I didn't choose a rat this time because they need weekly cage cleanings.

Hamsters: Hamsters are evil. The commit mass suicide, will bite, and I've never heard a positive story.

Rabbits: They can be litter box trained, but generally still poop around the house. The poop a lot, so you need to clean their cage often if you keep them in one or play find the poop, but eventually I think they can be trained to poop in a litter box too. Rabbits don't like to snuggle though.

Chinchillas: They pee. A lot. You need to change their cage 3 times a weak.

Gerbils: This was my pick. You have to change their cage.. once a month! Get them a 10 gallon aquarium with carefesh bedding and its like watching an ant farm with how they tunnel. They are trainable to ride in your pocket, but take much more work to be friendly that a rat would, but are not evil like gerbils. Mine already knows to like the hand.


I had an awful flare last night. No amount of meds or hot baths would help. I stayed 5 hours in the bathroom with nothing to do so I asked my boyfriend to bring the gerbils in (I had already gerbil proofed it, just don't leave anything on the ground they can chew on). They kept my attention and watching them play made me feel happy. They also are curious about feet but generally take the time to just run laps around the room chasing each other.

Tuesday, February 7, 2012

IC and College, a broken system

Okay so I missed class today. Yes, its a damn cold front. Yes I hurt. No, I'm not going to drive an hour in a car without access to the tub since Soma isn't even helping. We had a quiz today. Problem? This is Prof. A**hole. His syllabus says this:

Assessment:
Random Reading Quizzes (you can’t make a higher grade in the course than the average of your reading quizzes)
Mid Term – 20%
Presentation – 20%
Term Paper – 30%
Final – 30%


I already missed one quiz because of AN EXCUSED ABSENCE DUE TO A DOCTORS APPOINTMENT. He didn't tell me a thing about the quiz! Two weeks later I hear my class mates talking about it! I doubt he just wrote me a 100 for it. So now every time I'm slightly late I have to ask. I usually start with good faith in my instructors. Now, will he let me make this quiz up? Or did I read the entirety of Dangeros Liasons, once spent six hours IN ONE DAY to finish it, for nothing since no matter how well I do on everything else I currently have a 0 F?

Another problem is although the disabilities' director is a nice guy and had a face-to-face chat with this professor about my "unique" (its not) condition, the disability system is still styled for the handicapped and those with learning disabilities, not people with invisible illnesses. If he lets me make up the quiz then he is redeemed in my eyes, but it sure looks suspicious I missed the first two quizzes "conveniently" even if one had been scheduled on the only day I could see my GP. Trust me, school is a lot funner than seeing my GP. For one my clothes stay on.

Monday, February 6, 2012

A Solution to my PFD and IC pain?

I keep saying my spasms are cold by something to do with the air pressure and not the temperature itself.. I have studies backing me up, and a potential cure.

Tl;dr: Hyperbaric oxygen gives long term relief to pain. Hyperbaric deals with air pressure. Its what you have to sit in to not get the bends after SCUBA diving for too long due to the pressure forcing extra nitrogen into your system, not knowing the further to the surface you go the more the gas will expand.. you can see why this is a problem.


Hyperbaric oxygen therapy for painful bladder syndrome/interstitial cystitis resistant to conventional treatments: long-term results of a case series in Japan

Background

There is no confirmed strategy for treating painful bladder syndrome/interstitial cystitis (PBS/IC) with unclear etiology. Therefore, a pilot study was carried out to evaluate the efficacy and safety of hyperbaric oxygen (HBO) therapy in treatment-resistant PBS/IC patients.
Methods

HBO treatment (2.0 ATA for 60 minutes/day × 5 days/week for 2 or 4 weeks) was performed on 11 patients with severe symptoms that had not been improved by previous therapy regimens between December 2004 and July 2009.
Results

Seven of the 11 patients demonstrated persistent improvement in symptoms during the 12 months after HBO treatment. These responders demonstrated a decrease in the pelvic pain scale and urgency scale from 7.7 ± 1.0 and, 6.6 ± 0.9 to 3.4 ± 2.5 and 4.3 ± 2.4 after 12 months, respectively (p < 0.05). The total score of the interstitial cystitis symptom index and 24-hour urinary frequency demonstrated a significant sustained decrease from the baseline. Two responders, who received an additional course of HBO 12 and 13 months after initial treatment, respectively, did not suffer impairment for more than two years. There was one case of transient eustachian tube dysfunction and three cases of reversible exudative otitis media as a consequence of HBO treatment.
Conclusions

HBO is a potent treatment for PBS/IC patients resistant to conventional therapy. It was well tolerated and provided maintained amelioration of pain, urgency and urinary frequency for at least 12 months.
Background

Painful bladder syndrome/interstitial cystitis (PBS/IC) is a collective term covering a range of clinical complaints and pathological findings. Approximately 10-50% of PBS/IC patients demonstrate a classical mucosal ulcer (Hunner's ulcer), and the majority are diagnosed on the basis of positive factors and exclusions derived from the diagnostic criteria of the National Institute of Diabetes and Digestive and Kidney Diseases for IC [1,2]. The etiology of PBS/IC includes a diversity of factors and remains poorly understood. Therefore, appropriate therapy has not been established from clinical evidence [3-5]. Hyperbaric oxygen (HBO) therapy has been reported to be effective in patients with cyclophosphamide-induced hemorrhagic cystitis and chronic radiation cystitis for approximately 20 years [6-9]. The pathological finding of chronic radiation cystitis is similar to PBS/IC, focusing on ischemia and a reduction in bladder capacity due to fibrosis of the bladder wall [10-12]. On the basis of these findings, a pilot study concerning HBO treatment in several PBS/IC patients whose symptoms had not been improved by other conventional treatments was carried out.
Methods

From December 2004 to July 2009, 11 PBS/IC patients whose symptoms were resistant to conventional therapy were treated with HBO therapy. All patients had undergone conventional treatments including oral medication, intrasvesical instillation of heparin and hydrodistension. The ethical review board of our institute approved the study, and informed consent was obtained from all patients. Patients were treated with HBO (2.0 ATA for 60 minutes/day × 5 days/week for two or four weeks) sequentially after previous hydrodistention. After 10 sessions had been performed, patients were assessed and 10 more sessions were performed in some cases; eight patients underwent 10 sessions and three received 20 sessions (Table 1). In the case of patients with severe urgency or incontinence, pads were worn during treatment sessions. The efficacy of HBO treatment for PBS/IC disease was assessed using the score of O'Leary-Sant IC symptom and problem index (ICSI), comprising eight questions with the ranges of 0-5 and 0-4 with regards to pain and voiding symptoms, respectively, the scales of pelvic pain and urgency using a visual analogue scale (VAS) with the range 0-9, bladder capacity, daily voiding frequency, and endoscopic findings. A responder was defined as a patient with an improvement in ≥ 1 fraction among the total score of ICSI, and the scale of pain or urgency on VAS. The population of two related samples could not be assumed to be normally distributed. Therefore, statistical comparisons were performed using the Wilcoxon signed-rank test for changes from the baseline in the aforementioned parameters. P < 0.05 was considered to denote a statistically significant difference.

Table 1. Characteristics of HBO-treated patients and outcome of HBO
Results

The patients comprised 10 females and one male; the mean age was 60.0 years (range 28-79 years). The PBS/IC diseases in these 11 patients included eight cases of ulcerative type and three of non-ulcerative type, according to intravesical endoscopic findings (Table 1). Patients were followed up for a median period of 14 months (range 3-50 months) after HBO therapy. Seven of the 11 patients were classed as responders. Four patients, who demonstrated no remission or short-term improvement, were considered non-responders. Three of four non-responders had non-ulcerative endoscopic findings (Table 1). At the end of the HBO sessions, seven responders demonstrated a significant improvement in symptoms compared to the pre-treatment baseline (p < 0.05), and had sustained amelioration with mild impairment during the following 12 months (Figure 1). After 12 months, the scales concerning pelvic pain and urgency were still decreased from 7.7 ± 1.0 and 6.6 ± 0.9 to 3.4 ± 2.5 and 4.3 ± 2.4, respectively (p < 0.05). The total score of ICSI decreased from 26.7 ± 7.0 to 18.7 ± 7.4 (p < 0.05), and the 24-hour voiding frequency decreased from 22.4 ± 4.0 to 14.6 ± 2.0 (p < 0.05). Two patients (cases one and two) in the responder group, who had received 20 sessions at the time of the initial report, underwent 10 secondary sessions of HBO treatment 13 and 14 months after initial HBO therapy, respectively. The symptoms in these patients remained stable for more than two years. In addition, cystoscopic examination demonstrated marked granulation of the ulcerative lesion (Figure 2) at the end of HBO treatment in all responders. With regards to adverse events, there was transient eustachian tube dysfunction in one case and reversible exudative otitis media in three cases. However, no patients discontinued HBO treatment because of these side effects.

Discussion

The mechanism of action underlying HBO treatment is attributed to hyper-saturation of the plasma with dissolved oxygen. This gives rise to an increased concentration gradient between the circulation and surrounding tissues, allowing oxygen to enter damaged hypoxic urothelial tissues. HBO treatment accelerates growth of healthy granulation in injured tissues via stimulation of leukocytic functions including phagocytosis and production of growth factors related to angiogenesis [13,14]. HBO therapy has been used predominantly for chronic radiation cystitis and cyclophosphamide-induced hemorrhage cystitis in the last 20 years [6-9]. Chronic radiation cystitis is characterized by various histological alterations including sub-mucosal hemorrhage, interstitial fibrosis and smooth muscle fibrosis [10], which correspond to classical PBS/IC with ulcerative lesions [11,15]. Therefore, it was hypothesized that HBO could be an effective treatment for PBS/IC with typical histological changes (glomerulations, Hunner's ulcer and interstitial fibrosis). Seven of 11 cases treated with HBO demonstrated a significant decrease in urinary frequency and pelvic pain and an increase in bladder capacity. Cystoscopic examination revealed the scarring or healing phase of ulcerative lesions in all responders. Furthermore, the positive effects on symptoms were sustained for a minimum of 12 months. Van Ophoven et al. carried out a pilot study concerning HBO in six PBS/IC patients [16]. Our group reported that HBO treatment resulted in a marked improvement of severe PBS/IC symptoms in the initial two cases [17]. In addition, van Ophoven's research group reported the effectiveness of HBO for PBS/IC on the basis of a randomized, double-blind, sham controlled clinical study [18]. This study revealed that the scale of pelvic pain in the HBO treatment group was significantly better than in the sham control group, and the amelioration in responders was sustained 12 months after HBO treatment. The results of our study are almost compatible with their report. Interestingly, secondary HBO treatment prolonged the period of remission in two cases (cases 1, 2). Therefore, it is likely that a repeated course of HBO could accelerate the healing phase of ulcerative PBS/IC disease. Three of the four cases that responded poorly to HBO presented with non-ulcerative PBS/IC. Thus, we speculate that ulcerative lesion with the most evident expression of bladder ischemia may be a predictive factor to result in good response to HBO. HBO therapy was well tolerated by patients; adverse events including visual disturbance, eustachian tube dysfunction and claustrophobia were unusual [19]. Furthermore, the advantage of HBO treatment over conventional therapies such as hydrodistension [15], intravesical instillation of dimethyl-sulfoxide (DMSO) [20] and intravesical submucosal injection of Botulinum toxin type A [21,22] is that it is non-invasive.
Conclusions

The long-term efficacy of HBO treatment in 11 PBS/IC patients resistant to other conservative therapies was investigated. Seven of 11 patients, who underwent 10 or 20 sessions of HBO treatment, demonstrated good amelioration of the evaluated parameters including IC symptom score, scale for pain and urgency, 24-hour urinary frequency and bladder volume, for at least one year. Furthermore, two responders with worsening symptoms experienced prolonged improvement after additional HBO treatment sessions. HBO therapy was well tolerated, with few patients developing transient eustachian tube dysfunction and reversible exudative otitis media.

The present study suggests that HBO could be used for the treatment of PBS/IC patients resistant to various conventional therapies.

New pad may help ease IC/Menstrual pain

Emily, 25, Oregon - "I have very painful periods and these pads definitely relieved some pain and discomfort during the day. I've had the symptoms of IC since I was probably a young child and could never get relief. I was finally diagnosed in 2008. I am impressed with the packaging; didn't worry about dirt or bacteria. My energy was so much more positive and I felt comfortable and secure wearing the pads. I wear the pantiliners everyday. I'm so grateful to my boyfriend for encouraging me to order these pads!!!

Stef, 35, Washington - "I have tried the day pads and LOVE them. I will definitely be ordering some. They are so comfortable. I suffer from pelvic discomfort and my vaginal tissues are so sensitive."

VJ, 40, CA - "I have found using Empower pads have helped lessen the pain that I experienced with severe cramps when my period would arrive. Without Empower pads I would be in my home and not out living and enjoying life to the fullest. Thank you for creating Empower pads! I really feel that they are the best feminine hygiene product on the market."

Empower Pads are a breakthrough in feminine hygiene support. Each non-chlorinated pad has a bio-energetic tourmaline strip for cramp relief, a soft top layer, a breathable polymer backing, and superior absorbency. Tourmaline has become a focus of research at universities and research centers worldwide because of its health benefits, such as improving circulation, relieving stress and increasing mental alertness. Anions increase oxygen, thus inhibiting the growth and multiplication of anaerobic bacteria. For women, this means less unpleasant odors and less incidence of infection.

Common DO's & DON'T's when using sanitary napkins

1. Choose a pad that is made from light, breathable, hypoallergenic materials. Allergens and materials that do not permit airflow in and out often cause skin irritation.
2. Consider the style and size. Try to choose a pad that is appropriate for your body size and type.
3. Look for pad with a high absorption rate that also has the ability to lock in moisture.
4. Always wash your hands before handling pads to avoid bacterial contamination.
5. Do not leave sanitary pads in the bathroom for long periods of time. Moisture may seep into the pad and lead to the growth and multiplication of fungi or bacteria.
6. Avoid scented pads. Perfumes, scents and some chemicals found in pads are well know to cause skin sensitivity and burning, especially for women with sensitive skin and/or vulvodynia. If odor is an issue, change your pads more frequently
.

Attribution
ICN: http://www.ic-network.com/forum/showthread.php?t=73235

Saturday, February 4, 2012

Injustice

The biggest injustice is that the layman cannot do medical research for himself because he does not have access to the scholarly journals doctors do due to their price, and so he must be blindly lead in good faith by what his doctors say.

We cannot have patient oriented healthcare like this.

A year older and feasting

My birthday was on the third and I turned 24. Today I'm eating waffles and drinking apple cider for the first time in 3 years. My local store finally got preservative free waffles and a brand of apple cider without added vitamin C (painful for IC patients) or anything else. The waffles do have less than 2% butter milk though which may be a problem, and fruit juice is acidic regardless. I'll drink some milk later to counteract.

Wednesday, February 1, 2012

Update

I do have something important I still want to write about, but no time now. The weather's warmed and I've been attended school daily. Worried about getting a job though. Holding a temp summer job won't cut it. Trying to do a home IT business but my parents don't like the idea of having strangers around but not sure what else I can do from home but write.

Thursday, January 26, 2012

Good things come to an end

Had a massive flare today as the air grew chill once again. Thankfully I have the weekend off to deal with it.. or do I? College students don't have days off because we always have to read or some such on days without class. And since I'm the proclaimed "house bitch" (a term of humor used amongst me and my friends for whoever doesn't work and does the house work) that adds on.

There's another blog post I need to write about the doctor is always right mentality.. have some stories.

Sunday, January 22, 2012

House etiquette should be excused or not taken so harshly on IC patients

Dear mother and world. When you have IC you will jump in and out of the tub to the toilet. This will leave water everywhere. As we are nervous about time spent out of the tub or heating pad we do a rush, bad job of wiping up the puddles. I do slide a towel on the way out, but yes I may miss places. So sorry to be an inconvenience. Perhaps you could shoot my bladder so we won't have to worry about this anymore? Be sure to do enough damage so they have to rip the nerves out too though.

Survive Chronic Pain

A wonderful read for chronic pain treatments: http://pain-topics.org/pdf/IntractablePainSurvival.pdf

Reminds me of my doctor visit earlier this week..

"It sounds so obvious and simple, but the hardest thing an IP patient to do is, down deep in your mind,
heart and soul, stop denying that you have a serious, life-shortening, medical condition that will not go
away."


Which is exactly what she was trying to make me do after coming to terms with it and trying to plan around it. She said no, go live a "normal life" and don't waste my "talents."

My talent is writing. I am doing my talent now.

I tell people I'm very sick, but they don't understand, not even my regular doctors, and this is why you must find the right doctor at any costs. Thankfully I don't have to take any advice from my GP about my IC since she doesn't specialize in it. I get she was trying to make me feel better, but in fact it just made me feel worse -- useless. It doesn't help.


"Your attitude about pain must change. Increased pain hurts you. When the pain flares, your pulse rate
increases, and hormones stored in your adrenal gland flood your system causing further body deterioration,
rusting, and aging.
Therefore, you MUST do whatever it takes to suppress your pain and prevent flare-ups. You simply
want to keep pain as far away and as controlled as possible. Never try to "work through it" or "tough it out" or believe that character and will power will solve your problem."


This is an important point for ICers. The longer you let yourself stay in pain, the more the nerves will trigger pain and could cause symptoms to progress. Yet, try telling your mother/boss that you can't do such-and-such right now because you have to sit on your heating pad for a bit and see how understanding they are.

Friday, January 20, 2012

I want to eat this for nutrition, but all these good vitamins might hurt me

There are two vitamins ICers fear the most -- Potassium and Vitamin C. It makes us hurt a lot. In fact, the old medieval torture method of diagnosis done about 5 years ago was to force potassium into the bladder. If you screamed, you had IC. I'd scream regardless due to the catheter, and such is why I held off my diagnosis until last year when the guidelines changed.

Anyway, I bought some wheat germ. All natural, no preservatives. It's meant to be added to food, but I like the taste so use it as cereal, but then I noticed it say that it contains more potassium per ounce than any fruit. Now I'm too afraid to eat it.


On a minor, unrelated note I found out a little about my Dad's side of the family. We don't talk much. We don't mesh too well. Evidently they're somehow related to John Wilkes Booth (the guy that killed Abraham Lincoln; which is funny since I've been dating a black guy for the past 8 years), and some murderer is my second cousin. Uh.. yeah.

As for where they came from, my Pawpaw was Cajun and "hillbilly", the family has no idea where the "Goodwins" actually come from and there's only 4 of us left including me. My Mawmaw was Cajun and Irish. My Mawmaw's side keeps a nice family tree going and its fun to look at. They fought for the Confederates.

There's no mention of IC from them except that my Mawmaw had a lot of bladder problems, but this is also a lady who drank 2 pots of coffee a day. My grandmother on my mom's side was diagnosed with IC, leading me to believe it skips a generation. Past that? I don't know how many ancestors had IC. And when you consider there's a 10% chance or something that your not really related to who you think you are due to adultery and all that.. going back further may not help the research into IC as a genetic disease.

New Definition of Rape

New definition of rape: http://blogs.usdoj.gov/blog/archives/1801

“The penetration, no matter how slight, of the vagina or anus with any body part or object, or oral penetration by a sex organ of another person, without the consent of the victim.”


Wouldn't seen this if Anonymous hadn't been fing with the site earlier due to the SOPA drama. Sadly its back up, but this is a pleasant find.

The implications mean that women who felt violated during childbirth can legitimately call their experience birth rape without other women attacking them. We're all on the same team here.

If only that had the word "informed" before consent; that'd force doctors to respect our bodies, emotions, and preferences far more than what they do now.

Don't know what birth rape is, or how women could even remotely call birth a form of rape? It all has to do with how they're treated by their ever so compassionate doctors.

This sums up and gives personal stories: http://birthraped.wordpress.com/

Now maybe they can get justice. I hope ICers who've been treated like crap can have justice too. Sometimes doctors will just stick catheters up us without warning or asking.

Notice how the definition no longer exclusively includes penetration by a sexual organ or the intent of the perpetrator. If you felt violated, then you were violated.

This can bring me all the way back to the argument against enforced pap smears, but I think you guys are smart enough to connect those two things. I don't really give consent to the exam, I am coerced.

Thursday, January 19, 2012

Doctors who don't listen

My last post was a rant about the pap smear I was forced to go through, just like everyone else, to receive BC. Now I'll get to the IC part of the visit. Since my pants were off she saw those deep, purple, vein lines we cause when we burn ourselves on out heating pads. She freaked out, told me to stop. I told her that I hurt too much to stop.

She berated me. I told her, "It HURTS."

She thought for a moment and prescribed an anti-anxiety med and requested to see my vitamin D levels since I was "pale" and it can effect pains.

Then she told me I need to get out more, and not let this disease control my life. I replied again, "but it HURTS. I can't do anything like this."

This is where she stopped listening and urged me to not shut myself away in my room with a heating pad. Instead I supposed I should go out until my pain gets so bad I'm in tears and the spasms are out of control. I leave my house when I feel safe. Most days during the winter I don't feel safe.

I emailed my Uro and asked if there was actually any damage that could be done from the heating bad and she said that all her patients at the same markings and it was normal for us.

Plan? Cover it up with a cool tattoo. I mean, if I ever go into remission. Until then I don't need any needles.

So for the past.. oh.. 4 days? I've been saying very loudly, "NOW I SHALL GO EAT THIS CEREAL, WHICH AS VITAMIN D, AS I GO BURN MYSELF ON THIS HEATING PAD." I think my boyfriend is tired of hearing it.

Holding back Birth Control until getting a pap smear is not informed consent

I had my annual exam this week. I call it the "rape exam" as I'm forced to do it to receive birth control which helps my bladder pain and also to hold a healthy relationship. It reminds me of the movie Brave Heart when you got married the mayor or whatever had first rights to your new wife. In order for me to be together with my boyfriend of 7 years and sole provider of monetary support I have to deal with this every year even though I do not consent to the reasoning behind it and that no other country except us, Canada, and Australia does this. Planned Parenthood is too far away for me to do the HOPE program. People in the U.K. gawk when they hear how women are treated over here in regards to birth control.

One of my friends got pregnant trying to avoid the exam while I ordered my pills online, much to the horror of all my other "friends" who I am no longer close to due to their betrayal of my (correct) feelings.

http://std.about.com/u/ua/stdsinthemedia/papocpua.htm
http://www.epigee.org/guide/medfaq.html
http://www.uhs.umich.edu/papsmears
http://feministsforchoice.com/birth-control-held-hostage.htm
http://feministsforchoice.com/pap-smears-save-lives.htm
http://www.aafp.org/online/en/home/clinical/exam/cervicalcancer.html


So much conflicting information. The last one even calls people like me "silly." I have IC. I know to do my own research, advocate for myself, and how to make educated choices for the autonomy of my body. No physician I have been to has taken my sexual history seriously. I say I'm still with my boyfriend from high school, we were both virgins, and we have never had that form of cancer in my family. They ignore me and force me in the stirrups. Its either that or I lose my relationship and the relief it brings for my IC.

Even if a result came back abnormal I wouldn't seek "treatment" as the body usually wins out. If I had two abnormal results then perhaps I would, but, as an IC patient, anything down there hurts.

My favorite quote comes from a comment from feministsforchocie:

To make an informed decision and truly have a choice one must have all of the facts. I absolutely support the idea that women and men see their doctor at regular intervals and discuss their health openly and honestly, which includes doctors informing women of the high false positive rate of pap smears, letting women know that a pelvic exam is not necessarily required every year, and instead of having a blanket requirement that all women need yearly pap and pelvic exams, doctors should customize the yearly exam to fit the needs of each individual. How many more women would go see the gyno more often if they knew that they would only be subjected to testing that was necessary for them personally?

What bothers me the most is the idea that women must be required to see the doctor because they cannot be trusted to take care of their health themselves. The attitude is condescending and disrespectful. While screening for disease is beneficial, it is a choice and women should be trusted to make the decision for themselves.


Indeed, I am refused INFORMED consent. I am informed, I just am not allowed to make a decision regardless of my education. The test is from prehistoric times, and many women are now speaking about against it. It SHOULD be a choice, not mandatory.

I think men should be required to have a HPV test before they can receive Viagra.

But yes, (GASP) all that is medically necessary is a blood pressure check for birth control. There is no rule saying you must have a pap for the pill, but unfortunately the medical community allows doctors to keep giving women false information. These doctors believe it themselves.

Doctors should be allowed to recommend it, but never hold it and my relationship hostage.

They even screen women without a cervix.

Some sites say you need one every year, some say every two years, and I've heard every five years. No one is out there to give a definite answer. Its like IC. Its also sad that I'm looking for .gov info, but all the top results are BLOGS. I highly encourage you to view Dr. Sherman's blog on my blog roll list to the right.

My doctor told me there's no way out of getting a pap for birth control. I knew better. I knew I could get it from Planned Parenthood, I could get it from the internet, or I could go to Mexico because its sold OTC.

http://www.acog.org/~/media/For%20Patients/faq150.ashx

I really hate the phrasing here. "You may have this done to you," rather than "Your doctor may suggest this be done, but its your choice." This sort of phrasing is what sent me into five years of panic attacks. I didn't have my first pap until 22 because I was in so much pain from IC I just didn't care anymore. Reading the website causes alone causes me emotional pain due to my fears and over protectiveness of my body brought on my an overabundance of doctor exams and procedures done to me as a child. Reading an article like this as a teen really makes you feel helpless.

Yet the guidelines have changed, and this blogger complains about it: http://msmagazine.com/blog/blog/2010/05/13/to-pap-smear-or-not-to-smear-thats-the-question/

Funny thing is.. the links to the changes are gone now! Like I said, you can't find information to inform yourself anywhere except through blogs, which is sickening.

Wikipedia is the only one that mentions the differences between nations: http://en.wikipedia.org/wiki/Pap_test

I read one story about a Korean girl who married an American and when she came here she was horrified by the requirement to have a pap done to receive BC, so every year she returns home to get her prescription.

In the UK these are the guidelines: http://cancerhelp.cancerresearchuk.org/type/cervical-cancer/about/cervical-cancer-screening

Every 5 years. I'd be okay with that, if you know, I was in the risk group. But being in a monogamous relationship since high school and no family history of it makes it sound like a useless, humiliating test.

Yet, the doctors don't listen. They don't want informed patients. Perhaps, following the guidelines set by the UK, I'd be a lot less stressed around doctors.

http://www.owningpink.com/2009/11/20/new-pap-smear-guidelines-why-the-holistic-health-of-women-is-in-jeopardy

OH boy more conflicting information! The only important thing I can see out of ANY OF THIS is to get a pap smear when you feel you need one. Yet, the doctors won't listen.

A lawsuit can be made, but, as I like this doctor even if she's been corrupted by the evil bi*ch who left me in a room crying and softly rocking due to my anxieties over the pap because I demanded to speak to her rather than the male medical student and she evidently forgot all about me in there, I won't shove my weight around. She believed me when I told her I had IC. She gave me pain relief from it while I worked my courage to find the right IC doctor for me. She holds my loyalty for that, but I desperately wish she as well as other gynecological providers would tell their patients EVERYTHING including risks and pros and cons depend on each INDIVIDUAL as we do not all share the same experiences or sex lives.

One friend who was molested as a child held hers off until 30 but her doctor understood. Is the only way to gain bodily autonomy to lie? She wasn't lying, but for the rest of us? I wasn't raped or molested, but I was violated "down there" by a male doctor when I was five. I say violated because I wanted a female since "boys aren't allowed there", my mom said nothing, she later confessed this was because decades ago when she spoke out her doctors screamed at her.

What have we done to ourselves, women?

Sunday, January 15, 2012

Sunday Morning -- No Plans Allowed

In pain.. first bathroom time of day and it triggered really bad spasms.. was going to try and WoW raid today, but I just can't be around people now or else I may say things I'll have to apologize for later.

This is IC. And is sucks. It ruins your plans. But I know I won't hurt all day. Even if that means I have to slightly take too many muscle relaxers, by night, I'm usually feeling okayish. Its just this thing changes symptoms every 4 hours. It's why I'm afraid to get a job. I don't know what my life will be like within the next 4 hours much less year! It doesn't seem like a cold front came in last night, and sure maybe I had some salt.. but I feel its more weather related anyway. And still no one studies this. Guess I'll write an e-mail to the ICA. You'd be surprised who you can get in contact with.. like Mr. Famous Literature Criticism guy we studied for a week, I found out he's still alive, and e-mail him questions not clarified in our books or databases and the dude is super nice, replies within a day, and gives me all his personal writings.

Sadly Oprah hasn't replied yet to the whole "Do a damn show on IC" thing, but I'll keep trying.

Saturday, January 14, 2012

Professor Jackass

I'll start with saying I'm not sure if this guy is a jackass or not, as I only met him for maybe.. 10 minutes since I was late to class. First time I've had to wake up before 12 in a year, so my body needs some adjustment time (plus I ace everything anyway regardless of my attendance, I read more of the material than any other students).

He seemed nice when I talked to him about my IC and such, but he seemed in a hurry so I packed up and left.

Its his syllabus that worries me. If I miss more than three classes I get a WN. Some teachers won't even tell you this, let you go to their class for the entire year, do all the work, and then at the end say you were WN'd three months prior.

Well, my disability stops me from leaving my heating pad on bad days, and I don't think they'll let me go in with no pants and a heating pad tethered to my crotch. Just a hunch.

Even more worrisome is that he counts you as absent if you're ten minutes late. I'm usually always late. I'm sick. My bed time rituals are so ridiculous it deserves its own post, I was an insomniac even before IC, and I live an hour away.

I've never had a jackass for a professor before. One even said she'd never count me absent because I always did so well on my tests and she didn't want me to suffer if I was in pain, and just to keep up with homework and email it to her. Most of my professors were pretty awesome about it, ESPECIALLY the language professors. The one who runs the language lab at my college has my picture up on the wall! I have no idea why, but I guess she really liked this picture:



I'm not even a language major, just had to take some courses, but hit it off with them great. They're all laid back. In fact I still use the language lab as just a place to sit and recline if I have to wait on something or quickly download something to my laptop. They always welcome me happily and chat. Even though it was two years ago, they still remember I have IC and often check up on me when we cross paths.

My English teachers aren't quite as laid back, but are understanding and kind. I've never had an issue with missing too many days. They probably cut me a lot of slack, but like I said my GPA is a 3.56 and I always take part in discussions and even try to start some since the rest of the class always happen to be zombies.

Hopefully this guy isn't going to follow his syllabus to the letter with me. He'd be the only professor ever to punish me so. I'll be wary..

This is IC and this is what it does to your mind and body.

This is something someone linked that had been written by me. So I figured I'd just put it here too.

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.

Alternative Vs Western

There's the "hippies" and then there's the "scientists." I think both are wrong about things and both are right about others.

When I first diagnosed myself with IC via research after my bladder infection pain never went away I was horrified to see the diagnostic process involved a scope, which is wider than a catheter, being slid into the hole where no things were meant to go, and all the while being forced to be awake and aware during it. The hydro-distension looked dangerous and even back on 07 some people were saying it didn't get them a diagnosis until they kept switching doctors.

If there's any doctors out there, can you please tell me why Propofol can't be used for cystoscopies? They use it for routine colonscopies. I'd pay the extra cash, even sell my car.

That aside, thank God the guidelines have changed and its no longer needed.

Back then, (just in '07) that's "how we do things around here," or so said everyone. I felt quite attacked my my beloved IC community of the Interstitial Cystitis Network because I explained my intense fear of doctors, but the badgered me to the point that I left the site. I was 19.

Without a diagnosis I couldn't get the only saving grace at the time, that being Elmiron. I looked all over the internet to try and find a way to get it online. Canadian pharmacies required a prescription as did everywhere else, however, you can get birth control online with no exam needed. This was also something I did to the avoid the "you must have a pap smear even if you only had one partner and you were both virgins."

So I hid. I hid all summer, crying in pain. The only thing I had was Quercetin, something sold to body builders at GMC and some other over the counter supplement unusually used by sufferers of arthritis.

I had no pain meds, but at least knew the diet. And yes, I wasn't "diagnosed" but I knew I had it. Things gradually got better. But not enough to not leave me in agony once school started again. All I had was over the counter azo to help the pain, and thankfully it did good. Slowly, my pain got better.. I suffered through classes.. but by November it was gone. Within 6 months it had gone into remission. Was it the herbs? Maybe. I can't say. But I felt so proud about defeating this disease all by myself.

Then in '09 it returned. I resumed hiding. It was worse this time. I couldn't get to school, or even leave my bed. I took online courses just to keep my scholarships but none was towards my degree. The herbs weren't working this time.. or at least not fast enough.

The a nurse practitioner suggested to me by a friend saved me. She had patients with IC and believe me when I told it that's what it probably was. She gave me a muscle relaxer, and it helped a ton. She still wanted me to go to a urologist, but I told her I was too terrified to even have a pap done. She took care of me for a year until I was ready to try a Urologist, and at this point, the guidelines had changed to diagnose based off symptoms. I was recommended to a female urologist. The very first visit she told me she only diagnosed through hydro distention or the scope, at which I protested, saying the guidelines had changed. The reply was "well, that's just how we do things around here."

I started crying, she gave me a hug, and said she'd give me time to think about it as she attended other patients. I talked with my boyfriend on what he thought was best, and he said he fully supported my decision to do what I felt what was best for my body. I didn't return to that Urologist.

Through the ICN I found one 3 hours away that did guest lectures and such so was more informed. She knew about the guidelines, and unlike the last uro, said that instills wouldn't help the type of symptoms I was having (which was the only thing the other uro suggested).

I got on Elmiron, a ton of pain pills, and as you know, cyclosporine. I'm doing FAR better than last year. I don't think the Elmiron did much as I think my bladder is repaired, but I'm stuck with muscle spasms and false nerve triggers. That's just my hunch since the Elmiron hasn't made me "normal". I may discontinue. It was the pain killers that made me "normal"

Friends also suggest Alternative treatments like yoga, acupuncture, and just recently a "healer." Being from Louisiana I'd be interested in the "healer" just for the sake of curiosity; bonus points of its some form of voodoo. The problem with all of these though are the same problem I have with therapists.. I have to make an appointment and leave my house regardless of how bad a flare is or else they'll drop me as "customer".

I'm skeptical about yoga, but may try it. Acupuncture.. ehh.. not a fan of needles... and if my mom can find some "healer" that doesn't do anything crazy I'd give that a try.

So, in summary, I really have no idea. I feel the herbs during my first bout helped a lot, but this second one seems to be on steroids and they didn't seem to help too much.. plus the cost doubled with my medicine was just too much. If you have mild IC I'd suggest the herbs. If not then its your choice what to try first.

Thursday, January 12, 2012

Second Day of School

I woke up when it was time to leave to had to rush. Thankfully no pain. No pain at all. Not until class was over and I had to do some walking to finalize some errands, then the spasms started. There was a big cold front last night, so I'm surprised I woke up feeling well.

I took my meds, finished my errands, got home and sat on a heating pad before letting my bladder empty itself then that's when the worst pain comes. Well, after going to the bathroom I'm tethered to the heating pad. Its bearable, but makes me not want to move. At all. I really think a wheel chair would be the best option for me for now.. but they are expensive, my insurance won't cover rent on one for a few months, and my mom thinks I'm being dramatic.

So that's my status update. There's housework that needs to be done and I will be screamed at for not doing them, but I'm not leaving this heating pad until I feel "normal" again.