Importance of Advocating for Interstitial Cystitis~

      Good evening Readers, I hope and pray that your pain levels haven’t been too bad today. The last few days have been ok for me pain wise with my IC .My fibromyalgia was bothering me more, with spasms shooting up and down my legs. The last few days we’ve had a few nice weather days, its really starting to feel like spring, a time of newness and renewal. The buds are starting to bloom; I hear the birds singing in the trees overhead. The sky has been so blue, I love it, and it’s my favorite season. I feel at peace, a peace that passes all understanding, a peace that could only come from God.

     Tonight my topic is “The Importance of Advocating for IC” and what are the reasons why we advocate. How can we raise more awareness? We all can be part of this important cause, each story, each face, each voice matters; there is not one that’s too small.

     This entry will be a long one because I have a lot to say about why advocating is so vitally important to helping get this disease out there, more media attention, and more publicity. IC affects 4 -12 million people worldwide which when you break that down its 1 in every 100,000 people. That was a early study. When you think about that how many woman and men and yes even children have been diagnosed with this, it’s a lot of people, so if that many people have it, come more isn’t known about it, how come so many in the medical field are still in the dark about it. But when you see the breakdown of how many it affects, you realize when it says 1 in every…. You realize it’s a rare disease, so all the more REASON we need to advocate, advocate, and advocate as much as often as we can.

     What about all the people who haven’t been diagnosed yet? Who are still searching for answers? It  shocks me in some ways that so many in the medical field don’t know or understand IC, but then at the same time it don’t surprise me, because I don’t think enough awareness and education is being done.

How many of us have had to go to the hospital,  because  we were in a flare, and the doctors did not believe us, they humiliated us, belittled us, and brushed aside as if our pain isn’t real and that we are just there because we want a fix of meds, we are then labeled  just there for pain meds. And they look at us, with disbelief in their eyes. Many of us, ive been there, I’ve seen that look, ive heard the whispers, knife cutting words to our hearts.

    I’ve come to the conclusion no matter how much pain I’m in, it all the more reason I Need to advocate, and speak out. Bring this disease to the forefront’s use it as my motivation, I use my pain to help you all, to do my part in raising awareness. Ill speak out, ill blog, my goal is to eventually start a Ic support group in my city, I’ve done my research and the closest ones are in  Dedham and Newton mass. This breaks my heart,  I know im not the only one who feels alone, when I say this please understand that I have many Ic sisters supporting me online and others ive become best friends with, but none really live close by, not one that I could go out for coffee with or invite over, I need a support group, and something ive learned in my life is if you want to see something happen and it haven’t then step up and make it happen, don’t wait for someone else to step up. Be the change you want to see.

     There are many ways to raise awareness, in doing our part of being part of the change we want to see. By you speaking out, it will give courage to another! We can share our story with family and friends that’s a obvious one. We can blog, which is very therapeutic outlet for us to write down our experiences and share that with the world, your words, your story has power; you don’t even realize the impact you could be having in another’s life. Discussing issues that we’ve encountered and ways we cope, and share resources and connections we have , we are suppose to be a family and families help one another see their dreams come to fruition.

   Another way we can raise awareness is send money to the ICA or ICN. Do fundraisers, this is huge because its bringing your communities together under a common cause, reaching for a common goal. Bringing fellow IC suffers together in one place, so through education and making friends and raising money all at the same time. How awesome is that. There needs to be more fundraisers’ challenge you to think of ways you could do this in your own cities and towns and communities.

    Let’s be one UNITED FORCE, a FORCE that can be RECKONED with know it can be scary to step of your comfort zone.

 There are other ways to   raise awareness, you can write to your local senator and tell your story, speak about the importance of funding for continuing research. Write to the news stations, magazines. Write to the ICN and ICA and share your story. Write to congress, explaining why you do what you do, ask if there are ways you could come speak in front of congress. We are dealing with a disease of EPIC proportions, its time that we make EPIC strides in bring more education, more money, and more research to this monster of a illness.

    I don’t want fellow IC sufferers to suffer in silence, it makes me angry how many don’t understand or don’t take time to listen. Our bodies daily fight us, and we have to fight back, use this pain, use this fight as our motivation to get the word out. Many times there are overlapping conditions and it affect us emotionally too, it’s time to do some SERIOUS change in the making, and were going to be part of this.

    We need more [people in Hollywood to speak out, im not sure if anyone has, even if there are people in holly wood that have this, they haven’t spoken out as of yet. Why? Because there still is a stigma or they are afraid what their fans will think. When people speak out on a cause that they believe in, others around them step out of the shadows, and in turn give them respect.

   We aren’t doing all we can as a whole, if we were then more strides will have been made. IF the pain of IC is compared to a   end stage cancer patient, then why don’t more people speak about this? There needs to be more information about it on th news, more talk shows need to address entire shows dedicated to this topic. Not tiny segments, yes that is positive thing, but we need MORE of a positive thing. Im not going to be silent, ill speak out as much as I can, ill continue blogging, I consider myself a Ic advocate, doing all I can for you.

   We all can raise awareness and bring IC out from the shadows and into the light! One day we will see as cure! Remember the more awareness that is made, the closer we become to
IC being history. So SPEAK out…. SHARE your STORY~ because awareness is part of advocating… It starts with you~ be part of the change you want to see~