Is There Another IC Patient In My House?

Wednesday night I hosted my monthly meetup group for people with IC and chronic pain at my house. Last month one woman showed up, this month another one joined us as well. We dealt with the most important things first: food and getting comfortable. Once the food was layed out and our we were settled in a comfortable spot, sans shoes, we got started, It was an interesting triangle. The lady who was also at the last meeting has fibromyalgia. I have IC. The lady who I’ll call Jennifer, has both IC and fibromyalgia. I’m sure by the end of the night Jennifer was talked out after answering questions and discussing her conditions with each of us. The snacks were good and there was never a quiet moment. Now that’s what I call a good get-together!

Part of me wanted to cry with joy when I met Jennifer.There are reportedly millions of people with these disease yet until Wednesday night I’ve never met anyone who has it face to face. I’ve met several wonderful people who have IC through blogging but meeting this lady last night somehow made my condition more real to me. All three of us looked remarkably alike. Long lost relatives? Nope. We were just three women who look fine on the outside while suffering on the inside.

Jennifer has had many chronic overlapping conditions for years but was diagnosed with IC only three years ago. Since I have only been diagnosed since June, I had a lot of questions for her. She had a lot of answers. Some I agreed with and others that I found puzzling or questionable. When she left, I was talking to my boyfriend about her. Well, not about her  per se, but about different things that she said. She made me question whether or not the path of care I’ve chosen (certain doctors, physical therapists, medications) is the path I really should be taking. I slept on it and the conclusion I finally came to is this: there is no right or wrong path with IC. You find a doctor you communicate well with, a physical therapist that you trust, try out medications to see what works for your body, and pick and choose procedures after weighing the pros and the cons. What works for Jennifer may or may not work for me. She may not get along with my physical therapist but I may find that I really like her. As long as I’m progressing towards pain relief, I’m doing well.

As I mentioned earlier, Jennifer is much further along in her journey with IC than I am. She has tried different things and found what works for her-for now anyway. Jennifer is also what I’d call….new agey for lack of a better description. She reads books by Deepak Chopra and Andrew Weil and can repeat phrases from their books like they were her own. Do I want to read those books and repeat someone else’s mantras. No, I don’t. Is it wrong that Jennifer finds some sort of peace in doing this? No. But it’s not for me. I don’t need a health guru to bring me peace of heart and mind, all I need is God. I struggled for over 5 years to find a correct diagnosis. Thinking back to Wednesday night I realized something amazing about myself. I’m no longer a follower. Years ago, before I learned to be my own advocate, I would have taken the information Jennifer gave me as right without question because if she’s had the condition longer, surely she must know whats best right? Now I know that such thinking isn’t always correct. I can take what makes sense to me from her wealth of knowledge and use it for my own greater good. I can research the information that I have questions about and decide for my self if it’s something that will be good for me. Having to fight for doctors to take me seriously and continue with that battle to get a diagnosis that made sense to me has made me wiser, I believe.

It was good to talk with Jennifer. It was good to mentally note our similarities as well as our differences. More importantly, it was good to be in the same room with someone who knew exactly how I felt. I’ve never had that before. I’m hoping that the knowledge I glean from her, the knowledge that’s right for me, will be able to help me further my recovery. It was wonderful to be in a room with two other ladies and feel support and understanding. After this meeting, as with the last one, I felt refreshed and renewed. I felt hopeful.

 

Lack of Funding for Overlapping Medical Conditions

Two weeks ago, I was worried about a few things that were coming up. One of the big things was the hydrodistintion that I had done a week ago Friday. The usual and unhealthy way I handle stress is to keep it locked up inside of me. The irritating way my body lets me know it’s had enough is to rebel. This was the case two weeks ago when out of nowhere my IBS acted up. When I first diagnosed with IBS four years ago, it was irritating and inconvenient. Having suffered for the past several years with what I now know is Interstitial Cystitis, the IBS symptoms I experienced seemed like nothing compared to the pain of IC. I’m taking medication to help control IBS and honestly, all thoughts of IBS took a backseat to dealing with IC. While dealing with the symptoms of IBS two weeks ago while dealing with the pain of IC, I became curious to know how common it is to have more than one of these types of diseases. It turns out, it’s a lot more common than I thought. There are millions of Americans suffer from chronic fatigue syndrome, endometriosis, fibromyalgia, interstitial cystitis, irritable bowel syndrome, temporomandibular disorders, and vulvodynia and TMJ. Those of us with more than one of these diseases are known to have what is called overlapping or cormorbid conditions. There are coalitions formed to help gain funding for these diseases and to find out why they so commonly overlap. Here are a few organizations that you can look at if you wish http://www.endwomenspain.org/ and  http://www.overlappingconditions.org/ and http://nwhn.org/overlapping-pain-conditions-women-pain-need-more

According to the research I’ve done on the Internet, doctors are educated to treat the symptoms, not the patient. If the doctor cannot determine what the problem is, there’s a good chance you will be dismissed without a diagnosis but sometimes with the belief of the doctor saying ‘it’s all in your head’-this is a personal favorite saying of mine as I’ve heard it from a few doctors over the past few years. The problem with doctors who only treat the symptoms instead of looking at the patient as a human being is similar to the person who is book smart but not street smart. A good doctor should, in my opinion, be able to look at the symptoms and the patient as a whole person.

Another issue with these eight commonly overlapping diseases is knowledge and awareness of the diseases themselves. There is so little known about each of these diseases and my personal opinion for this is because the eight diseases mainly effect women. The National Women’s Health Network reported in April of 2011 that the average funds allocated for researching these conditions through the National Institute of Health is…$1.33 per affected woman, per year. Yes, that’s right $1.33. Funds allocated for these predominantly female conditions are equivalent to just a penny over the price of 3 postage stamps, 24 cents over the price for a movie rental at Red Box, and over a dollar less than most restaurants charge for soda pop. The National Woman’s Health Network estimates that over $80 billion is spent in health care costs regarding these conditions. Combined, chronic pain is as prevalent as cancer, heart disease and diabetes. The National Institute of Health spends 96% less on chronic pain research. This is appalling to me. There is something we can do to change this. We can call or write our Congressman/woman (www.Congress.org ) to find specifics for your congressman/woman) and ask them to act on the policy recommendations listed under the Take Action section on the Overlapping Conditions Organizations website. They even have a template to send a letter if you’d prefer. The policy recommendations include: cost effective investment in research, education of health care professionals and expanding public awareness. As both women and victims of these conditions we need to stand up and be heard. We know our worth and we are worth so much more than a lousy $1.33 a year.

Please take a few minutes to watch this video called “Through the Maze: Women & Pain”

http://www.youtube.com/CECPW