Wednesday, December 28, 2011

IC New Year's Resolutions

It has been a week since I started one of my new treatments and two weeks since I started the other. Last week I was SO BLESSED to have three days of what I like to call "IC freedom". I still had some frequency, but I had NO PAIN one day and my pain was at a level 2 for the other two days. I had forgotten what it was like to live without pain. I was happy and really enjoyed not letting my pain control my day.

Unfortunately, when you have a chronic condition, you can't expect miracles over night. I am back to hurting some this week and I am also very fatigued. Even though the pain and some other symptoms are back, the good news is the pain seems to be getting to a 7 at its highest. Although this pain is not fun, it is still something I feel thankful for. The 10 stabbing pain which at times has consumed my life for weeks or months is currently not here. If you have ever experienced level 10 nerve pain, you totally understand  why a 7 level pain is so much better. I think the new meds are working they just need more time. Both medicines I had to start at the lowest level and gradually increase my doses.

I think more improvement is in my future. For now, I will deal with it day by day the good and the bad and hope that more care free days like the ones I experienced last week are still in my future. I know I am on the right track with my current treatment plan.

I also wanted to take this time to make some IC resolutions for the New Year:



I will be happy with my body. I have gained some weight from IC over the past few years as most patients do. It is easy to get depressed about this. I want to learn to love my body the way it is. I know I did not get this way from binge eating or being lazy. I am doing the best I can. I want to try to find the energy to work out more and get in better shape for a variety of reasons, but I will love myself as is along the way.

I will stand up for my body. I have tried so many treatments at this point to make different doctors happy that I now know many things that work and don't work. I went through hell with DMSO. My urethra can not handle instillations. If a doctor wants to try any other instills on me, I will respectively say NO. I also have had many bad incidents with compounded creams. I will also turn these down. It's my body and I have the right not to make it hurt worse with certain treatments.

I will not be ashamed of my naps. I have a confession: sometimes I take naps. For some reason, I have felt ashamed of this. I guess I was afraid people would thinks naps are only for lazy people and little kids. I do A LOT for an IC patient. Sometimes I need a nap to recharge and then get up and take care of more responsibilities. My body hurts a lot and it is not my fault I need to nap. I now see there is nothing to be ashamed of.

I will work harder on personal goals. IC has gotten in my way many a time, but I have never let it stop me in my tracks completely. I want to continue to accomplish more goals in spite of this horrid condition. I know I can do it. I will stay with treatments that make me feel the best so I have the energy to pursue some more of the things I want.

I will not give up on trying to make IC more well known in the media. I have some ideas on how to spread IC awareness and I want to work on executing some of these plans. The few times IC has appeared in the media on shows such as the The Doctors and a few others, the disease was REALLY misrepresented and symptoms were played down. I want IC to have more media time and I want the facts to be accurate. I watch Medical Mysteries and similar shows all the time and I have seen all sorts of invisible illnesses on there: marfan syndrome, ehlers-danlos syndrome etc. IC never makes the cut. It is our turn to shine. We need awareness and help.




I hope everyone has a great New Year's weekend. This will probably my last post for 2011. I look forward to blogging with all of you in 2012.

 

Wednesday, December 21, 2011

Someone is FINALLY Listening to Me

I am not sure if it is a Christmas miracle or just persistence paying off, but I am finally being heard. Doctors are finally beginning to listen to me. I have been through such hell over the last few years with a variety of doctors. I have had to leave certain doctor offices because they accused me of making up my symptoms (before diagnosis). I have abandoned other doctor offices due to verbally abusive treatment or because the staff was just not educated enough to treat my symptoms even with a diagnosis.

One main problem I have had for a while is that no doctor ever really wanted me to try MY ideas. So a week or so ago I went to the urologist discouraged as ever. I even brought my mom for emotional support. My current urologist is one of my nicer and more knowledgeable doctors, but I have only been there a few months. I was scared he was going to be angry with me for stopping my bladder instillation treatments. I was supposed to do six treatments, but after four, I realized the the debilitating pain and flu like symptoms they were causing were just not worth it. The treatment was ruining my life more than the condition. So I stood up for my own body and stopped going.

The doctor came in and to my surprise he was not mad at all. He began going over a laundry list of possible next steps with me, none of which I was too eager to try. That's when I just blurted it out "I have a lot of shooting nerve pain and I really want to try such and such medication". "Okay," he said as he took out his prescription pad. I was in happy shock. I have done a lot of research on this medication and it really seems like it could help my symptoms. It is a very common medication, not addictive or a narcotic, so one would think there would be no problem getting a prescription for it. Just a few weeks earlier I requested the same medication (from one of my other doctors) and the verbally abusive, witch like nurse practitioner told me that I am not allowed to take oral medications and she will only prescribe me creams. (Hmmm...that makes a lot of sense, especially since every cream she has ever prescribed me has made me sick). So this is the mentality I am used to dealing with, so I was just so happy I was finally getting to try a treatment I feel is right for MY body. 

My mom went on to ask the uro a few questions about IC. When he got to a certain part about food and IC, he said "your daughter can probably tell you better than I can, since she is the one who deals with it everyday". I smiled again. I AM THE ONE WHO DEALS IT EVERYDAY. Why do more doctors not realize this??


I am not just some fool. I write this blog. I have spent hours researching all sorts of causes of pelvic and bladder pain. I spend a lot of time reading and posting in multiple support groups. I have written published articles about pelvic and bladder issues. I may not be qualified to do surgery, but I sure as hell am qualified to talk about IC and give my opinion on treatments and medications. It makes me feel satisfied that finally a doctor sees that I am an educated patient.

As if that day couldn't get any better, I had been struggling for months to get into another specialist for pain connected to the same hospital as my uro with no success. He said to have the girl in the front of the office put a call in. She made a call and I got an appointment just a few days later!! This doctor and his senior med student spent an hour and a half with me going over every pelvic or bladder issue I have ever had from 16 until now. They came up with a second medication for me to try.

It has only been a few days since I have started these two, new treatments so I am clearly not pain free, but today I was doing a lot better than I have done in a couple of months. My pain was lower. I think my nerves are finally being calmed. I don't expected to be cured and I don't need to be cured to be happy. I just want to get to a level where I have more good days than bad. I want to be in the driver's seat of my life. My vagina and bladder can sit in the passenger seat (or maybe even the trunk for that matter). When my pain gets below a certain level I am so much happier and productive. I can be a better person.

I will keep you all updated, but right now I think I am on the path to something positive in this whole whacky world of IC treatment. Never stop fighting. Just a few weeks ago I was ready to give up hope completely because my symptoms were out of control and mismanaged and now I have not one, but two doctors being nice to me and am on a treatment plan I am happy with. 


Will this new treatment be my magic combo?? It's too soon to tell, but it feels great to have hope and it feels even better to be listened to by doctors. I live and breathe to fight for IC and Vulvodynia awareness some days. My opinion counts and so does yours. Every patient's does. It is your body, find a doctor who will work with you.


Well that's all for now, but in case I don't post again before the holiday weekend I want to wish everyone a very Merry Christmas and a very Happy Hanukkah. Thank you for all your love and support. I hope you enjoy a fun (and hopefully pain free) time with family and friends.

Wednesday, December 14, 2011

Women with IC are Awesome

Since IC is very painful at times, many of us, myself included spend a lot of time ranting and complaining. We complain about things like fatigue, spasms and all the things we can't do anymore. It is good for us to vent, but sometimes we end up sounding like sad, little puppies.

The reality is, although we are in pain, we are some of the strongest and bravest women around. We go through hell-ish times with very little help or answers from the medical community and we are still standing. A lot of people in our position would have given up a long time ago. So it is important for us to remember that women with IC are fabulous, intelligent and resilient. 


Here is a list of reasons why I think Women with IC are awesome:

-We have our own secret society of sorts and we stick together.

-We are bad ass enough to have been thrown out of a doctor's office or emergency room for standing up for our healthcare needs.

-We could win an Olympic gold medals for accurately peeing in a cup. (really, we could probably do it blind folded at this point)


-We have had doctors tell us "it is just in your head" and we kept searching for answers anyway.


-We can walk around and do tasks when we have to with smiles on our faces even if we are in 10+ pain. (most people would be curled up in a ball crying)


-We are very resourceful. We can turn almost anything into an ice pack or seat cushion if we really had to.


-We have extra compassion for others. We know that just because someone looks good on the outside, it doesn't mean that they feel good on the inside.


-We are brave enough and mature enough to talk about our bladders and vaginas publicly---a lot of people wouldn't be able to handle that.


-We can make jokes about our illness.


-We are grateful for things that a lot of pain free people take for granted. 


-We've had to reinvent our whole existence and we survived.


-We make pajamas, hospital gowns and other loose garments look good.


-We aren't afraid to stand up for other ICers and other people with invisible illnesses. 


-*We have IC, but we will never let it have us*-




Monday, December 5, 2011

Pain Free Christmas: I.C. Spoof of "White Christmas"

I thought after my last ever so serious post, I should do something a little goofy and festive. Here are the lyrics to "Pain Free Christmas" an I.C. spoof of the song "White Christmas". Enjoy!


I'm dreaming of a pain free Christmas,
Just like the ones I used to know
When my I.C. was missin’ and doctors still listened
And my bladder didn’t dictate where I could go

I'm dreaming of a pain free Christmas,

Just like when my bladder wasn’t the star of the show
Where I spent less time pissin’ and my pain was missin’
and I never ever had to have my sitting pillow in tow

I'm dreaming of a pain free Christmas

with every prescription my doctor writes
May your days be comfortable and filled with glee
and may all your Christmases be pain free

I'm dreaming of a pain free Christmas

where I don’t have to take a heating pad everywhere I go
May you feel well enough to go on a shopping spree
and may all your Christmases be pain free

I'm dreaming of a pain free Christmas

with every hospital co-pay check I write
May your bladder stay calm so you can just be
and may all your Christmases be pain free

May people show you compassion and hospitality

and may all your Christmases be pain free

And may all your Christmases be pain free



Friday, December 2, 2011

Am I Living Life? Or Just Something Like It?

Lately the painful parts of this condition are taking a toll on me. I try my best to be the IC optimist, but the past month or so it has been really hard. I don't know if it is the change in seasons or my failed DMSO instills, but my pain is high, high, high. 

It's to the point where I am never comfortable. A good day means the pain is low. It is rarely ever gone. Sometimes I may get a random hour of freedom, but then it is back. But most of the time it stays around a 5 minimum lately. Then in the evenings most times, all hell breaks loose and the 9 and 10 sharp pains attack. It is like living hell.

Being in a constant state of discomfort or pain is not easy. It really, really wears on you both mentally and physically. I keep going on because I have responsibilities, but lately I don't feel like I am actually living, I feel like I am putting on a facade that looks like a life.

By this, I mean that I am going through the motions: I still write, I still grocery shop, I still go to restaurants, I still do laundry, I still try to socialize some etc. But to be honest, there is only so much that I can enjoy. No matter what I am doing no matter if it be the most boring thing on earth or the most fun thing on earth the pain is always impacting my body. There is part of me that can not wait for things to be over while I am doing them. The pain is just so distracting that sometimes all I wanna do is run to my couch wearing loose pajama pants and curl in a ball with a heating pad. Even if I am shopping in a mall (one of my all time favorite past times as a Jersey girl) I can't wait until I have purchased the last item I came for so I can go home and attempt to find some form of relief. 

Before IC, I was the kind of person who pushed the hardest at everything. I did too much, committed to too much, ran around too much, but it was okay...a part of me really liked it. Now I do things and I feel like it is just getting by. I feel like I am never as happy as the people around me.

If I am in a restaurant or a bar with shiny happy people, I just feel like one giant facade. IC is such an invisible condition, that I feel like an undercover agent. I have the same smile on my face as all the other girls. I have the same over priced handbag and new boots as many of the women in the crowd. Friends and strangers ask me where I get my nails done or how my day was. They think I am one of them, not knowing as they are smiling for real, I am smiling to hide the pain---the shooting and throbbing and burning. All I want is to sleep because it hurts so badly.

I can totally see why someone with IC would never want to get out of bed. I keep getting up everyday and I will continue. I continue for my husband and my family and my friends. I continue because I know I have a lot to offer to the world and I want to contribute something to society everyday. I continue because there are certain things I need to do to be able to survive in the world. But when push comes to shove, the deep rooted in joy in so much is gone.

Each day I am going through the motions. But as long as the pain is this draining, am I really living life? Or just something like it?

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?

Monday, October 31, 2011

Screaming "Monica"

As today is Halloween, you may hear many people screaming: screaming during a scary movie, screaming because a family member pulled a Halloween prank, screaming on a haunted hayride. Last week I heard a different type of scream, a much more bone chilling type. 

I started DMSO treatment last week for IC. If you don't know what this treatment is, to make a long story short a solution is put into your bladder directly with a catheter and then you have to lay on your side and rotate every few minutes. When you are done you go to the restroom and urinate out the solution. This is a six week treatment program, once a week, and I have only gone to one appointment so far, but I was excited to try it as I am hopeful it could help my symptoms.

This procedure was being done at my uro office, who I get along with, not to be confused with my V doctor who has me beyond frustrated. Since I was very nervous about getting the treatment my first time, I sat anxiously in my exam room waiting for the nurse. As I waited and played Angry Birds on my phone, it dawned on me that the receptionist told me that they only do this treatment one day a week and to try not to ever cancel an appointment b/c they need to fit a lot of people in. This means there were other real live IC patients just feet away from me in other rooms. I have never met another IC-er in person so the thought intrigud me.

As I continued to play my game, suddenly I heard screaming. It was coming from another exam room. 

"I CAN'T DO THIS ANYMORE!!!!!" a woman yelled, we will call her "Monica" for the sake of this post. "I AM SICK AND TIRED OF BEING IN PAIN ALL OF THE TIME. NO ONE LISTENS TO ME. NO ONE IS NICE TO ME. NO ONE HELPS ME." She also dropped several f-bombs and was making tons of noise and banging around.

A nurse started SCREAMING back at her. They fought for a while.


The nurse then paraded out in the hall and started screaming at other nurses: "I CAN'T TAKE MONICA ANYMORE. TELL DOCTOR SO AND SO I REFUSE TO HANDLE HER. SHE ALWAYS ACTS OUT OF CONTROL".


As I listened to this scenario play out, a few different things went through my mind:


1. Someone was getting in trouble at the doctor's office and it wasn't me. (I have had fights with many a doctor, but never at that level where the whole place could hear. This was no small office, this was a huge hospital.  I felt terrible for her, but I guess it made me glad to know I am not the only one who fights with doctors)


2. Did Monica have IC? Should I go talk to her? (I knew that I couldn't. I know that I would probably get in trouble for going near another patient's room and asking about her condition, but I wanted to so badly. I wanted to tell her that she wasn't alone. I wanted to tell her about the people who have treated me like crap over the years. I wanted to tell her not to give up.)

3. I hoped Monica's nurse wasn't the person who was going to be doing my procedure--luckily, she was not.  (I know this is selfish, but the nurse sounded very hostile and out of control and I was just petrified to have someone in that state of mind catheter me.)


The screaming continued, blood curdling screams. Monica was truly in pain. I wondered if someone was too rough performing an exam on her. I wondered if she was being denied pain pills. Eventually after a few more minutes of drama it got quiet, I think I heard someone get Monica's doctor. 


As I did the rotation part of my procedure, I had more time to think. It was just SO SAD that Monica had to go through that. We have so much available to us in this country and there are women screaming out loud in pain and still the medical community does not take IC seriously enough. I wish every doctor who has ever treated an IC patient badly could have heard Monica scream.


I guess Monica's scream was like the scream heard around the world for me. I am in a lot of online support groups and I read about other women's IC pain, but to hear another women screaming in a hospital the way I have screamed in my own home on my darkest day, it was like bringing it all to life.

As for the nurse, she said some horrid things to Monica. A part of me wishes the nurse could have IC just for one day (I would never wish it on anyone for real) so she could understand why Monica was so cranky. Many nurses and doctors don't have enough compassion b/c they can't feel our pain.


And Monica...I wish her well. I wish her more pain free days. I wish I could tell her that even though the hospital staff wasn't listening, I was.



Tuesday, October 25, 2011

Don't Stop Believin' (Me)

I feel like IC has made me flaky in terms of keeping up with social outings. Just a couple of years ago, I was the kind of person who you could ask two months in advance to meet you for a cup of coffee at 4:00 pm on a Wednesday and I would be there on time and with no reminder. I RARELY cancelled on anyone, ever. Even if someone was mean to me or if I didn't think an event was too exciting I would still show up.

Now b/c of IC I don't have the luxury of always being able to keep plans I make in advance. I feel scared that people I know are judging me and I am scared that one day I am going to wake up and no one is going to want to be my friend anymore because I am now one of "those people" who always cancel. The difference between the IC me and "those people" is that I really WANT to keep my word. "Those people" cancel plans at the last minute only for you to find out that they passed up your party for a better offer. When I cancel on someone I am likely at home on the couch with a heating pad.

Don't Stop Believin' Your IC Pals
I think some friends and acquaintances try very hard to figure out a pattern of how IC effects my social life. If you are reading this and you have tried to analyze the pattern, please stop. You will not find an answer b/c even I don't have the answer.

It is very hard for me to explain to people how random of a disease IC is. I swear on all that is important to me in this world that some days I can do a tap dance and other days it takes all my might to get out of bed and do what is required of me. Some days I have lots of energy and other days I want to go to the ER b/c I am in so much pain. 

It is really hard for an IC patient to figure out how she is gonna feel day in and day out because this disease is still so under researched and we still don't have all the answers that we need and neither do doctors. It is especially hard on me b/c I have no food triggers really. My IC is different than some, very triggered by stress and it also involves a lot of nerve pain. It's not like I can say let me avoid eating this orange and I will be fine today. It doesn't work like that for anyone and especially not for me. I can literally be fine one hour, happy and virtually pain free and the next hour be crying in pain. 

I think it is also hard for people to understand why sometimes I seem TOTALLY normal. I have to push myself sometimes to have a social life as I am only in my late 20s. Now and then when I am feeling up to it I do treat myself to a night out drinking or dancing. People may see me there and think I am nuts to claim to have such a painful disease, but what people do not see is that it takes me two days to recover from the outing. I may wake up with a throbbing bladder and aching muscles because of the outing and have to be within arms length of a heating pad and a bathroom for the next 48 hours. I no longer have unlimited energy the way I did in college. I have to make choices. If I know I have a friend's birthday party on a Saturday, I know I need to rest Friday night because if I don't there will be a good chance I am going to be flaring and miss it.

When push comes to shove, when something is super important to a friend I would go in 12 level pain if I had to. I would never miss a wedding or graduation or any other event that big unless I was literally in the hospital and wasn't allowed out. I will always push through pain to be there for other people for the most important times.

I just want people to believe me that if I cancel on meeting them for an ice cream cone or a cocktail it is not because I don't like them or because I am mean or because I am truly flaky...it is b/c this condition is getting in my way and I am doing the best I can day in and day out to learn how to live better with it.

Some days I do worry about waking up with no friends b/c they don't want to tolerate my IC scheduling issues. But I try to stay strong and remember that the older I get it is more important to have a few good friends then a ton of fake friends. I know if someone truly cares about me they will always take my word and forgive me when my IC makes me a drag.

So if you have a friend who has IC or any similar condition, know that she wants to be as active as possible, it's just that sometimes she physically can't. Don't Stop Believin' (in her).

Tuesday, October 18, 2011

"You are Running Out of Options" ??? (hmmm)

Hell hath no fury like a woman suffering from chronic pain. I think that makes a good tag line for my day. Like many of my readers, I have been through hell with many doctors. I have had doctors make fun of me to my face for "making up" pain. I have had more than one sexist urologist office try to give my appointment away to an old man because "I didn't look sick enough". A lot of these infuriating instances happened a few years back when I had no diagnosis of any type. Now that I have been diagnosed with FOUR painful conditions, you would think this madness would end. Nope, doctors are still finding ways to be mean to me.

I may be a doctor, but I have no idea how to help you.
I have one type of sharp pain no one can seem to get in check: not my uro, not my V/PFD specialist, not the primary care doctor who abandoned me etc. So I lived with this pain and do my best. Although many IC and V patients are treated successfully with a monitored amount of pain killers, I know better than to even bother asking for even one pain killer b/c I don't want to hear statements such as "you are too young for pain killers", "you are making up your pain for drugs" or my favorite "our office is in the ghetto so we can't let anyone have pain killers b/c we don't know who is really sick and who is selling the pills". Yes, all these things have actually been said to me over the years.

I have four treatments right now 2 oral medications (non-narcotic), a suppository and I am in physical therapy. While these things help some of my other symptoms, they do not help this one pain. So at a trip to the V doctor last week when I again complained about this pain, I was offered a new cream the doctor was just sure would be helpful. I sent in my order to a compounding pharmacy and as I researched it, I got excited that the cream may help. It contained a medication with nerve pain blocking qualities and I feel this pain is nerve related.

My "magical" cream comes and I am so excited to use it. Only five minutes after applying it I was in pain so bad and had a horrible reaction. I was crying and screaming and my hubby wanted to take me to the ER. The ER here seems to hate IC patients so I wouldn't let him. It was a hell-ish night and took me 12 hours to feel better.

I was very ANGRY that I was prescribed this cream. It costs $50. I have been with this doctor over 2 years and if there was ANY chance I could have a reaction I think they should have warned me. Compounding pharmacy medications do not come with the typical warning labels that regular medications do, so it is really up to the doctor to let me know about side effects.

When I call to complain about this medication and asked for an alternative treatment I was SHOCKED by how poorly I was treated. They have the NP (who I do not like b/c she has NO bedside manner call me). "You should stop using the cream", she tells me. Hmmm...YA THINK!!!!! I almost went to the ER b/c of the cream, clearly I already stopped using it. 

When I ask her if I can try the oral version of one of the medications in the cream (non-narcotic), a simple "no" comes out of her mouth. "You are already on one oral medication and we don't allow patients to be on more than one oral treatment at a time". I was baffled and in shock. I hung up and everything began to sink in. She was so full of it. I know some IC patients who are on 10 different oral medications and I am not allowed two??! (which would actually be three, clearly she doesn't even read my chart).

So I call back in tears demanding to talk to the doctor and instead I get her again. BLAH. "You really need to come in again if you want us to evaluate you for anything new". "I was just in five days ago I tell her. What could of changed since the doctor evaluated me then?" "Well, I don't know how to tell you this, but you are a complex case and you are running out of options." 

How on earth am I running out of options???!!! You have to be kidding me is what is going through my head. There are so many options I have never been allowed to try: trigger point injections, botox, narcotics, TENS and the list goes on and on). 

But in her mind b/c her magical cream didn't work and I could not tolerate Elavil, I am running out of options. I told her I just wanted her to know that I was angry he prescribed that cream. She said well, "I am sorry if you feel that way but there is no way we could have known. Many other women describe this cream as life saving." (They prescribe it to that many people and I am the first one to have a reaction?! Doubtful).

I told her I really want to talk to the doctor and he is supposed to be calling me back tomorrow. It will likely get me nowhere. I am starting bladder installations with my URO next week. I am also looking into new treatments and doctors in other states. 

 I feel really taken advantage of by this particular doctor's office. She kept insisting I had to come back even though they just saw me. I really feel like they just wanted more money and don't care about my health at all. The doctor will probably end up not helping me over the phone, I will probably end up just keeping my normal follow up appointment instead of scheduling a sooner one and I will probably just suffer in silence. But I am hurt, hurt to have ANOTHER doctor tell me "Hmmm what can we do??" when I am not being given a chance to try even a fraction of the known treatment plans. I feel abandoned. I want a doctor who actually cares about me and about curing and healing pelvic and bladder issues. Does such a doctor exist??


I realize this post is more ranty than most of my usual posts and is also kind of a downer and doesn't really have any inspirational or women's power message at the end like most of my posts. I apologize, but it is just one of those days. I guess sometimes we all just need to rant.

Tuesday, October 11, 2011

IC Should Stand for Insane Cost

Today I am going to talk about a part of IC I haven't talked much about yet: the financial aspect of having IC. On an everyday basis, I am pretty much a private person about money (I don't like to tell people my household income, rent price etc.), but I think it is important to address this issue with specific examples so people can really understand the burden this illness causes many people in so many ways. 


Since I got married in September, I really didn't want to have to go through a bunch of procedures and appointments in August and September, so I am kind of paying for it now, playing catch up with a a lot of doctors.

Last week I had to go to my Vulvodynia specialist in Philly. This is what it cost me:

Bridge toll: $5
Parking lot fee: $15 (This may seem insane to some, but this place has no private parking and in Philly and NYC unfortunately many lots cost this price) I couldn't drive around looking for a cheaper lot or I would have missed my appointment.
 Co-pay: $25
I was given a new prescription cream: $50!! (lovely...sarcasm) 

So my total cost of visiting the Vulvodynia specialist totaled $95, not including gas used in my car.

Then this week I had to go back to my new IC specialist:

Bridge: $5
Parking: $6 (this place has its own lot...yay)
Co-pay: $25


I was not given any med changes, so no cost there. So my total for that appointment was $36 which is a more refreshing number than the $95 total at the other doctor.


However, there is more to this story. The doctor found an in office treatment for me to start at the end of the month (yay). I really need to try this treatment to get pain flares under control. The downside? I have to go to this office for six weeks straight. So the parking, bridge and co-pays for the six visits will amount to $216 dollars.


This is all on top of the 16 weeks of physical therapy I am already involved in at $25 a pop (so $400 total) and the medications I take each month: one costs $5, one costs $15 and one costs $36.


I remember the days right out of college when I would ask myself "what happened to my money?" and it would turn out I spent my extra cash on sushi, cocktails or shoes. Now I definitely spend a lot of my budget on IC.


As frustrating as spending this money is, I want people to be aware that I am in NO WAY the worst case scenario. I have good health insurance through my husband. I know tons of ladies with IC with no health insurance or not so good health insurance and these costs are a TON more for those people if they can even afford the treatments at all. I know I am blessed to have health insurance and to be able to afford my treatments.


Since there is no set in stone cure for IC a lot of patients spend a ton of money trying different treatments with the hope that maybe, just maybe something will help.


So the next time your friend with IC says she needs to stay in to save some money, go easy on her, it is likely not an excuse. Having IC is expensive. It is an expense people without chronic pain don't really have to think about.

Sunday, October 2, 2011

Fall Fashion Tips for the IC Gal

Hello all...I am BACK from my honeymoon (only 2 mini flares the whole time...woo!). I think the lack of stress while on vacation helped. So I am back and back in time just for fall weather. A lot of your friends may be posting status updates on Facebook such as "Yay, jeans and hoodie season". Jeans are great for many people, but for a lot of IC gals jeans are the most hellish item on earth to wear. If you can't wear jeans it doesn't mean that you can't look cute and get excited about fall clothes. As a person who has not worn jeans in over 3 years, I am here to offer you some of my own tips and tricks. Please feel free to add comments about other ideas that work for you.

Fashion Dos For the IC Gal 

Do...

Invest in multiple pairs of leggings. Leggings can be an IC gals best pal. The stretchy waist and seamless crotch area make them very comfortable.

Fall in love with tunics. Tunics can hide IC belly, med related weight gain and are also very stylish. You can buy casual tunics to run errands in or jeweled ones for a night out on the town.

Learn that matchy tracksuits are your friend. Tracksuits can make you look pulled together while still feeling comfortable. Don't be discouraged about not being able to afford "Juicy Suits" or other expensive brands. Tons of affordable tracksuits exist at stores such as Old Navy, Target and Burlington Coat Factory.

Buy cotton/spandex blend yoga pants in black. These pants can be pulled off as dress pants in business casual situations. Just pair them with a button down or sweater and pumps and you will be good to go. You will no longer have to worry about the painful crotch seam on "real" dress pants.

Get excited about handbags, ankle boots, jewelery and other fun accessories. IC may limit the kind of pants you can wear, but the illness can not stop you from accessorizing to the max.

Embrace dresses. Dresses are a great way to feel pretty while still letting your vajayjay breathe.



Fashion Don'ts for the IC Gal

Don't...

Wear any item of clothing that hurts you just to be trendy. Your health comes first not what is being advertized on the cover of any magazine.


Live in pajamas ALL of the time. Sure, pajamas are awesome for the IC gal ( I LOVE LOVE LOVE pajamas) but being in pajamas 100% of the time can lead to more depression for some people, especially in the fall and winter. Even if just once or twice a week, put on something else...even just a tracksuit, a little makeup and some jewelery so you can feel extra sexy and fun.


Allow anyone to force jeans upon you. You may have friends or co-workers who harp on you for never wearing jeans. It is none of their business. Next time someone bothers you, just say "jeans are not my thing" and move on.


Get discouraged if your shopping budget is small. Start by shopping in your own closet. So many older pieces mixed with newer pieces are coming back in style. There may be tons of hidden treasures in your own closet. You can also find great deals at discount outlets and gently used designer clothing places such as Plato's Closet.


Forget to shop online. Websites such as Overstock.com have awesome deals. 


Hope you enjoyed these tips. As an added bonus, check out my first in a series of IC awareness videos. This one features an animated young woman defending her condition to an uneducated college classmate:

I.C. Awareness: Are you that girl with that random disease?
by: thevalcat











Tuesday, September 13, 2011

Beauty in the IC Breakdown: I Just Want to Strut

I am getting married on Saturday and I can't wait to feel absolutely beautiful. If a fancy gown and professional makeup job don't make me feel absolutely stunning, nothing will.

I have not given up my love for fashion because of IC by any means. I still do my nails, I still keep up with the latest trends, I still put on makeup when I go out to dinner with my friends or my fiance. But no matter how beautiful I look on the outside, sometimes my insides don't quite match. The pain changes you. 

Before IC I lived to flirt. Even when I was in relationships I would get a thrill from the cute gas station attendant who winked at me or the super sexy bartender who flashed his smile. Now when I am out some place many times it is about surviving. I sometimes rush through shopping trips I used to stroll through b/c of the pain. 

Before IC I had this rule that I never sat down in clubs. I was a nightclub promoter at one point and would be at a club from 9 pm until 2 am wearing heels and not sitting. I know that sounds insane, but at the time I liked it. Standing made me feel more outgoing and sexy. Now  I can't wait to find chairs when I am out socializing. For some reason standing in high shoes in one spot for too long puts a lot of pressure on my body and causes a lot of pain.

Truth be told there is no amount of makeup or Coach bags or expensive boots in the world that can make my pain any less when it strikes. I may look like a fashionable, social queen sitting at the table next to you in a sushi restaurant, but on the inside there is sometimes a part of me who wants to go home and put on my loose pajama pants to make the pain less. 

This Saturday, I just want to strut. I know the outside will look great: I have a dream dress, a hair style chosen and my makeup being done at a nice salon. But I want to feel as equally confident and glamorous on the inside and I will. It is my goal to have the wedding day experience of a bride, not a bride with IC, but just a bride. 



I have Sunday to struggle again. Saturday I will do my best to ignore my condition and just strut.

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