Health care reform within the United States is receiving a firestorm of attention and activity from both politicians and individuals right now.  I will not share political opinion on this website as that is both inappropriate but also not what the focus of this website is about.  On the other hand, it is impossible for me not to address health care reform, being that I lived for five years with a painful and chronic illness (IC/PBS) and utilized Western and holistic treatments to find relief from the unrelenting pain.

 Initially I was so shocked and tired and worn out from the intense pain that I drove literally in circles from doctor to specialist to doctor to find some answers.  It's funny looking back now that I felt such pure relief just being told an official name for my disease, as if by name alone the disease and I were a real pair.  Once I finally received the diagnosis of IC, I thought there would be a magic pill that I could take and that my doctors would be full of empathy, support and a real understanding of IC.  Instead, most doctors didn't even know what IC was, or if they knew what IC was they wanted to put me on anti-depressants and send me to psychologists so I could learn to live with the pain.  I clung to Western medicine like a stowaway lost in the icy seas after the Titanic sank for many years.  I had been taught (like millions of other Americans) that Western medicine will take care of everything if you just follow their tests, their procedures, their medications.  But if you happen to fall outside those parameters and are unfortunate enough to get a chronic disease that little is known about (when fortunes are being put towards curing other well-known diseases), it can be a sad and lonely world floating in your raft trying to avoid the icy flotsam in the water. 

I believe in doctors and I believe in the power of a good health care system.  I feel that health care shouldn't solely be for the rich or for those already in good health.  I know too many friends and relatives living with extremely painful diseases, and would never deny them their medication or their treatments to ease their pain and sleeplessness.  But I do know what helped me rid my body of IC and what currently prevents me from getting colds and other ailments: being proactive about my health care each and every day.  It's in the choices I make about eating leafy greens, removing pork and beef from my diet.  I eat whole grains, drink kombucha, and take vitamins and supplements.  I exercise and soak up the suns natural Vitamin D. 

It is a lifestyle change that I chose from the bowels of despair from living with IC that continues to change my decisions every day.  It is a choice of being proactive, not reactive when it comes to my health.  We all share this choice when it comes to our health care.  I hope that health care reform comes from within, not through government or other interactions.
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IC and society 07/22/2009
 

For anyone not suffering from IC it would be difficult to imagine how complicated it can sometimes be to do all of the social things that healthy people take for granted such as traveling, shopping or going to a movie.  I used to panic at the thought of a road trip which lasted more than twenty minutes because how would I urinate while in the car?  I tried to trick my bladder by urinating prior to any road trip and dehydrating myself during the trip to prevent the urge to urinate, but this was to no avail and I would either be in tears or looking for the next exit sign so I could find a restroom. 

A simple trip to the grocery store also created panic: Will someone move my full shopping cart if I stop to the use the restroom mid-way through shopping?  How will I handle the trip if the restrooms are closed?  Alot of women with IC are on special diets to help with their IC related allergies, so a trip to the grocery store can be extremely depressing.  What if you had to shop someplace surrounded by foods and drinks which you can see and smell but no longer eat? 

This scenario repeats itself when attempting to watch a movie at the movie theatre (I avoided doing this for two years with IC as it was too difficult with the constant need to urinate), as you are surrounded by people munching on popcorn and candy, which are all on the "no" list if you have IC.  And how would anyone enjoy watching a movie at the theatre in which you have to urinate every 20 minutes, so you have to stumble across the legs of other movie goers and then manuever through the stairs in the darkened theatre?  It makes more sense to watch the movie in the comfort of your own home, with close proximity to your own bathroom, and with the ability to use the pause button of the remote control.

All of these issues created intense feelings of depression and isolation for me.  Each shopping trip, road trip, and excuse to not go out to the movies with friends and family seemed like my life had become a mockery with IC.  The more we educate the public and our friends and family about IC the easier it will become for us to not be embarassed to ask for other accommodations.  One example is to ask your doctor for a note which you can have laminated and carry with you in your purse which reads that you have a bladder disease so that sometimes you can have access to closed or "employees only" restrooms.  Swallow your pride and ask family members or friends to help by doing your grocery shopping (offer to pay for gas).  Invite friends and family over to your home to watch a movie.  There is always another way to do things.     

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