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.