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.

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..

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.

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.

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.

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.

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.