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.

Have a question? Ask me anything.

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 my medical related articles here.

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

Sunday, January 13, 2013

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.

Friday, December 7, 2012

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


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.