Friday, May 6, 2011

The Medical Journey

Seems to me I am looking at the same road that I just traveled. I am once again having to find another rheumatologist.

To be honest, I am tired of this well worn path. This path that constantly puts me at the mercy of doctors that unfortunately I am having a hard time having faith and confidence in. It wasn't always like this.

Upon my original diagnosis, I was so trustworthy of our medical profession. Like all good patients, I truly believed every single word that any doctor told me. I followed their instructions to the letter including taking all medications prescribed, resting and exercising, eating as healthy as possible, etc. etc. Somewhere along this long traveled road, I have lost confidence.

I am not sure why. I am not sure if anything in the medical profession in particular forced me to this shaky place I now find myself. I just now know that I find this road filled with shadows that I just can't define anymore. And I also find that this particular road is getting more bumpy the longer I have rheumatoid arthritis and now, related immune diseases.

I think part of the problem is that doctors assume (I hate that word) that we all will be miraculously freed from the pain and damage of ra with the newer medications available. True that many patients do OK on these medications but I have yet to hear many stories that they feel 100% again. More likely a 30% -  70% improvement, if even that.

And here in lies my problem...

Since the medications can't cure ra, why do doctors make it seem like if we just take a pill (more likely 5-8 pills) or do a shot or take an infusion, it will all be better? I have no doubt, they want us to have some faith in them, some hope. For this I am grateful, but I think they sugar coat this disease just a bit too much. I think, they don't want to frighten us from the get go of the long road we will have to travel. And, I also believe that doctors don't realize the true pain of ra. I could write a book on how the pain of ra goes untreated or under treated in millions of ra patients.

And so, I find myself on the lonely road again. Walking every so cautiously around the next bend...hoping....praying...I will find the sunlight again.

My recommended sources on how to find a rheumatologist: