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?

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