Sunday, November 27, 2011

All I Want for Christmas is a Dr. Who Doesn't Give Up on Me

All most little kids want for Christmas is their two front teeth. All I want for Christmas is a doctor who doesn't give up on me. I had to stop doing DMSO installations. I was scheduled to do 6 and had to stop after 4, I was not finding much relief. I decided it is my body and it was not worth the extreme pain and hours of my life I was losing each week recovering from the installation that was not really helping. I feel like it helped in a VERY VERY minor way with nighttime frequency, but it was making sharp, pelvic pain worse, which has always been my worst symptom. I am not sure if it was the DMSO itself or if being catheterized each week was just too invasive for me, but it was not pleasant, it was rather hell-ish actually.

About two weeks into December I have my next appointment with the Uro (a NP does the installations). I am a little nervous he will yell at me for stopping or be angry that the installations were not helping. I have had such bad experiences with doctors in the past who have given up on me b/c their one or two ideas didn't work. They didn't throw me out of the practice or anything, but I ended up leaving b/c I was getting no help with my pain and they were treating me poorly.
One thing I will say about this doctor is that he was SOMEWHAT more open minded than the past ones. When I told him about my failed journey with Elavil, he didn't make me go back on it even though it is his favorite IC med. I just really want him to suggest something else now that I have decided DMSO is not my cup of tea, something that works.

I feel sometimes like I am screaming and no one hears me. A doctor maybe able to help one or two of my symptoms, but no one seems to deal with this one painful symptom that bothers me the most. I have come to terms with my IC in the fact that I know there is no cure right now and I am okay with that, I am just looking for some more support and compassion from a doctor along my journey. I want someone who is my cheerleader so to speak. Does such a doctor exist??
It would also not hurt to find a proper pain management specialist as part of my Christmas wish. I greatly lack proper pain management care and it is really difficult some days. It seems really wrong to me to tell patients that there is no cure for a medical condition, but then refuse to provide proper pain relief. I am definitely asking Santa for good pain management specialists for all my IC sisters and me. 

The Christmas season is a special time and I am grateful for my family, my friends and all that I have, but I can't help but have that one wish for that magical doctor. I don't expect anyone to cure me, I just expect someone to say "I understand and let's help you live the most comfortable and normal life possible despite this horrid condition".

So Santa...if you have some time after dropping off puppies, kittens and hippopotamuses to all the kids out there, if you could give me a map to the most awesome IC doctor on earth, Id' be forever grateful. 

Wednesday, November 23, 2011

Always Be Thankful for Your Health (and cute pajamas)

When I was a little kid, old ladies used to tell me to be thankful for my health. Well, I found out sooner in life than I wanted to that those beloved little old ladies were right. Healthy people often take health for granted. I mean it is easy to. Sometimes when you feel good it is easy just to work, play, travel and live and not think about what would happen if you ever got sick. Part of it may be that no one wants to think about getting sick because it is depressing. If you are reading this and you are totally healthy, take a moment to be thankful.

Now, IC has definitely made me realize that health is something to be thankful for. I never imagined only a few years ago that I would be 27 and fighting with doctors and having a weaker bladder than Betty White. I never imagined that I would find myself curled up with a heating pads on nights when I would rather be out with friends. But nonetheless, here I am. IC is real. Thousands of painful conditions are real. Even though IC can't kill you, it can certainly make life miserable at times.

Yes, these are my real pajamas, aren't they cute?
Despite the fact that I have IC however, I am still very thankful for many things that make having IC just a little bit easier. It is easy to get wrapped up in being negative (which I admit on some painful days I do) but there needs to be a time to stop and look at the positive. Little blessings are hidden everywhere and as bad as you may think your life can be at times there is always someone out there some place going through something worse.

I may have IC, but I am thankful that I also have:

-Health insurance to lower the cost of my doctor appointments and medications

-A car to get me to and from said appointments

-A husband, family and friends who stick by me

-Ice packs, heating pads, cushions and other tools to help me when I am in pain

-Lots of cute pajamas to wear on days when I am too sick to go out (hey, just because I am in pain, doesn't mean I can't still look adorable hehe)

So well I do like to bitch and moan sometimes about plenty of IC related things (pain management issues, insomnia etc.) and plenty of non-IC related things (student loans, rude people, the high cost of living) today I will be thankful for the things that I do have.

I may not have a perfect life (who does?) or a totally pain free life, but I do have a lucky life with plenty of blessings.

And even though I have IC and it is clearly no fun, I am still thankful for the parts of my health that I do have. Some people can't walk, can't see, have trouble breathing etc. and I am very blessed that I don't suffer from any of those issues. 

So this Thanksgiving season take the time to be thankful for things: big things like your health and even the little things like cute pajamas.

I wish all of my readers and your families a happy and blessed Thanksgiving filled with lots of turkey and minimal pain flares for you IC gals.

Thursday, November 17, 2011

I'll Never Apologize

I'll never apologize for writing this blog. I think this blog may freak some people out who don't suffer from chronic pain, but ya know what? I have decided that I do not care. It is important for this message to get out there.

First of all, no one ever apologizes to me, at least not anyone from the medical community. The doctors who didn't believe me 3 years ago never apologized for being wrong. The doctors who don't treat my pain correctly never apologize for the nights I have spent crying. The evil nurse practitioner who gave me the cream that made me flare certainly didn't apologize.

As for the non-medical, regular people who this blog freaks out, one part of me understands. I mean, before IC, did I ever think it was possible to have an entire blog devoted to a bladder? Of course not. But now as someone who suffers from a medical condition that so few people know or care about I feel totally different.

So yes, my blog is about a bladder. If someone has a problem with it, I say: GET OVER IT.

Yes, in this blog I say words like bladder and vagina. These are body parts. Body parts can be injured, inflamed or infected. It is a simple part of life and any mature person should be able to discuss it. If someone is grossed out about reading about vaginas and bladders, maybe that person isn't mature enough to be having sex, watching porn or looking at dirty magazines. It's almost like a double standard in life. When someone brings up a vagina in a sexual way, it's okay, it's not taboo. When you want to talk about a legitimate medical condition, people try to make you feel ashamed. Well, I am not ashamed, not me, not anymore.

When I think about it, I have always been kind of weird. I am like a freak wrapped in a Tiffany's box. I say this because on the outside I look totally normal: I really like hip clothes, getting my nails done and wearing makeup. When it comes to my interests however, I am anything but normal. I watch really strange indie flicks that many people find morbid. I like old music, ghosts and writing odd stories. I have always had an interest in dating men that many people consider too old for me. I have obsessions with 1950s movie stars, Jack Skellington and anything dinosaur related. I have had all of these quirks long before IC. 

So maybe I have always been kind of weird. Maybe this blog is a little weird. But maybe some of us are born to go against the grain. If everyone marched to the same, totally proper beat there would never be inventions, discoveries, new movies, cures etc. 

There is not a lot of control in your life when you have a chronic condition where the symptoms like to come and go at random.  Educating people about the condition and helping other women who feel like they are suffering alone gives me purpose and hope. If 100 people visited this blog and I was able to help just one woman with IC feel like she is not alone, then I am happy. I don't care if the other 99 people are making fun of me for having a blog about a bladder.

So this is my blog. Yes, it is a blog about a bladder. If you don't like it, just don't read it. I have no plans to stop writing it and I will surely never apologize for it.

Monday, November 14, 2011

From V.I.P. to V.I.P.

I am 27, nearing in on 28 years old. If you asked me what V.I.P. meant when I was 21, I would have told you it stood for very important person. If you ask me what V.I.P. means now, just 7 years later, I will tell you it means vulvodynia, IC, pelvic floor dysfunction.

Growing up I always had friends, but I would say I was somewhat introverted at times. I enjoyed my alone time. I like to stay up late writing screenplays, chatting on Compuserve or AOL or watching Lifetime. I am the kind of person who has always been able to find ways to entertain myself even when I was alone. I enjoyed hanging out with friends and doing typical young people things like going to the mall or calling boys and hanging up...but even if just once a week I liked to be totally alone.

Fast forward to college and everything changed. Life was on the go. I got a taste of the traditional version of V.I.P. (very important person). I became very outgoing and from about 18 to 22 my friends and I used to go to nightclubs every Thursday, Friday and Saturday night. We lived for it. We loved the music, we loved cocktails, we loved being social, we loved guys. 

We were kind of like the younger, Jersey version of the show Cheers. We went to all the same places all of the time. Everyone knew our names, we never waited on line, we got lots of free drinks, we partied with DJs, we made out with hot strangers and the list goes on. We were straight A college students by day and party girls by night. When I look back at it, we had no real responsibilities. Now knowing what real hardship is, it is nice to think about it sometimes.

I remember I had this "rule". I didn't like to sit in clubs. I loved my high heel shoes and always liked to be on the go. Sometimes I would go out at 9 pm and not come home until 4 am and I would stand or dance the entire time. Now this thought is laughable. Chronic pain is so hard on the body. I don't go to bars much anymore, but when I do, I always wanna know the sitting situation. I still like fabulous shoes, but I like to wear them in a chair. 

Being in college for me and being this V.I.P. nightclub goer was surreal. I was living in a fake world. Nothing seemed to matter besides my friends, house music, new clothes and parties. It was in no way reality, but it was fun.

I lived a "normal" transition into adulthood after that...working full-time for the first time, making a decent salary and still going out on Friday and Saturday nights whenever I felt like it. Then right before my 25th birthday the life changing pain hit for the first time.

Sometimes, I will admit I get slightly envious of some people I meet who didn't get hit with IC and such until 35, 45, 55 and beyond. I wonder, why me? Why so young? What would I be doing differently if I was given an extra 10 or 20 years without IC? Then I realize, it is not easy at any age no matter if it be 18 or 60. IC sucks. 

IC has made me change really fast. It has made me realize that health is the absolute most important thing in life for yourself and your loved ones. IC has made me love a one on one meal with my mom, or my husband or my best friend more than I could ever love any night out partying.

IC has really brought me back to some of my isolating ways. Sometimes it is hard to be in pain and be with all the shiny, happy people. I spend more time writing, watching movies and doing other things that were a bigger part of me during childhood, but that I put on the back burner in my early 20s. I do still like to socialize, but I don't do it nearly as much as I used to. I usually try to do something social at least once a week b/c I love my family and friends and don't want to be a complete hermit. But gone are the days of going out three nights in a row. I would collapse from pain and exhaustion if I did that.

I really enjoy gatherings in people's homes now more. They feel safe. There is always access to comfy seating and a bathroom. The nightclub world is no place for a person in chronic pain. I do get thankful for the times that I do get to go dancing or do something of that nature, even if those times are more few and far between. It has become a treat.

I actually don't mind my hermit ways so much as long as I am choosing them. I really do love to write and create things and watch movies.  But now and then there may be something I am invited to and I can't make it to because of the pain. Those are the times I resent IC. Going out all night or staying home and being a hermit are both okay, as long as they are my own choices. I don't like when I have to let IC choose for me, but sometimes I have to if my IC gets out of control. 

So here I am, a woman of almost 28. I have known what it is like to be a very important person...and now I know what it is like to be a person with vulvodynia, IC and PFD. Now that V.I.P. means vulvodynia, IC and PFD to me, it doesn't mean my life is over, it just means it is different. I am finding new ways everyday to educate, to love, to make changes and to do better. Sometimes I stumble, sometimes I succeed, sometimes I cry and sometimes I love my life. 

Monday, November 7, 2011

Is it Inhumane to Deny IC Patients Proper Pain Treatment?

Is it inhumane to deny IC patients proper pain treatment? I think so. I mean, let's get real. IC patients and those with similar illnesses (PN, V, Pelvic Floor Dysfunction) are not druggies searching for their next fix. IC patients are truly and really in pain terrible. No matter how much pain IC patients are in, many doctors still deny opiates and other strong pain treatments to many patients especially young females.

It's sad when help is available and patients are denied treatment.
I am not 100% sure why doctors are so reluctant to prescribe opiate pain killers. Part of me thinks it is because of the large number of healthy people who abuse opiates for fun (thanks jerks). Part of me thinks maybe law makers are cracking down harder on the medical community. A really large part of me thinks that no doctor wants to be responsible for a patient's "addiction". But here is the thing: anyone who does his or her research will find that patients who are in good mental health, are REALLY IN PAIN and are monitored only have around a 1% chance or less of becoming addicted to these prescription drugs. IC patients don't want to use drugs. IC patients don't want to get high. IC patients just want the pain to stop so that they can lead more productive lives. When you have shooting, throbbing and stabbing pain radiating through your bladder, vagina or rectal area it is pretty hard to focus on even the simplest of tasks sometimes. Proper pain management could be life changing for IC patients.

Now, I can understand a doctor not wanting to give prescription pain pills to someone who walks in off the street and just claims to have pain. IC patients do not fit this mold. IC patients HAVE A DIAGNOSIS, a diagnosis of a painful and incurable disease. IC patients typically have to try a variety of treatments to find ones that work to control the illness. Many of these treatments (hydros, bladder installations and surgeries) are very invasive and painful. I feel like the medical community thinks that it is "okay" to treat us like science projects, sometimes causing us more pain along the way, but that they feel it is "not okay" to treat our pain.

 The saddest part is, the only reason most IC patients who desire opiates want them is because they have tried them and the medicines truly do help to relieve the pain. If standing on our heads, drinking Gatorade and blinking helped the pain, IC patients would desire to do that instead.

I think it is inhumane and selfish of the medical community to know that there are medications available that can help a patient and deny that patient treatment.

I joked around with some of my IC friends the other day, that maybe someone should take a taser to the groin of mean doctors and then they will know how IC patients feel. But when I think about it, that wouldn't be good enough. The pain of one taser zap eventually fades. IC patients struggle daily. 

So what is the answer? I think one of two things needs to happen: doctors either need to believe in the pain of pelvic pain patients and prescribe narcotics when necessary. If they don't want to do that, then the medical community needs to get in gear and invent a treatment that is non-narcotic and works. It's not the fault of pain patients that they have tried all of the existing alternatives with no success. 

I think it is inhumane for doctors to deny chronic pain patients with proper diagnosis narcotic pain treatments if they are suffering. What do you think?

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