I have request to remove all archives of this blog from the Wayback Machine, thanks.

Where I've Been

This is a brief update. My IC returned twice since I hit remission. I am currently fighting it off again. I am now fairly privacy minded unlike before (future employers Googling me.. I don't want them to know I have a disability, ect.), so I'm afraid this is a very brief update.

I have moved on from this blog to /r/interstitialcystitis on Reddit. It's not a blog, but rather a sort of social media. All of the useful tidbits for ICers are posted in the sidebar there.. mine here seem to be very outdated.

Declining Amount of Posts Due to Feeling Well

Physically feeling well, that is. I feel like I'm headed towards remission or at least close enough to remission to feel secure. I still hurt when I eat something with a small amount of citric acid or on certain weeks of when my period is supposed to occur, but overall I've been function all year and its nearly spring here!

Since this blog is dedicated to my struggles with the medical industry and life struggles involving IC my post amount will be declining until the IC returns. I'm not optimistic enough to think that its gone for good. I though this once, and it came back worst and longer than the first battle. I will do something different than last time, though. I will stay away from my beloved coffee and tomato sauces.. I will break the diet moderately, not radically.

For those who are reading and curious the job situation is still going fine. So fine in fact, that I find myself getting tired of the job and feel brave enough to pursue a higher job level without fear of making myself look bad due to the restrictions my illness would put on me. Problem here is that I live in the boondocks and all there is here is low leveled labor like retail and customer service.

I have three goals coming up that I want to meet badly: finalize my long-awaited trip to the tropics to scuba dive, save up enough money to feel secure encase I do have another IC battle, and to move into a larger city where I can get a job I'm proud of. The healthcare situation is pretty terrifying in this country, so I'm not sure if I'll be able to take my graduate trip to the tropics. I'd like to at least manage the other two.. but on the other hand IC made me aware of how valuable life is. I was so suicidal during that time that I was unsure if I'd be alive in five years. Visiting the one place I always wanted to since I was a child watching PBS underwater specials before I die is pretty important to me, so I'm not sure I can just let the opportunity pass me by while I'm well enough to do it regardless of financial restraints.

If I talk more I'll start going on a political rant, which I don't want to do so I'll cut it off here. My posting will be very thin. If something negative happens regarding my health I'll certainly do a post on it. Until then, assume I am fine and healthy. =)

And always remember that your healthcare is in your hands.. if you're uncomfortable with something find another doctor who will do things your way. Please don't support people who want to limit healthcare options due to their own beliefs so we can always have the option of second opinions and getting the care that we need.

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.

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

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.

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.

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.

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.

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.

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.

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.

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.

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.