As you might have read by now on other blogs, WEGO Health is sponsoring a writing challenge during the month of November. It is highly unlikely that I will manage 30 posts in 30 days, but I’ll give it a shot. The sponsors have kindly provided a few prompts to get people started, however I already had a few posts scheduled, so started the month with those. Today, however, I’m using the provided prompt and writing about five things that changed my life as a patient – one for the worse and four for the better.
Disease – The disease of rheumatoid arthritis changed my life. There are people who get all sentimental and talk about the wonderful life lessons they’ve learned due to their disease, and how, on reflection, they wouldn’t change anything. They believe they’re a better person because of it and are thankful for the experience. You won’t read that here.
This disease has changed my life for the worse. There are things that I am no longer capable of doing. Given the health of my grandparents and great-grandparents, I had expected to be active into my 90′s. Ha!
This disease affects my entire family. My husband is so worried about me that he a) is probably negatively affecting his own health, and b) gets annoyingly overprotective of me (which is probably a better situation than family members who don’t believe there’s anything wrong).
My youngest child was four years old when I was diagnosed. I remember one day snapping at him, “Would you quit digging your elbows into my knees!!” The look my husband gave me, without saying a word, made me realize that it wasn’t my son. It was me. He wasn’t any rougher than the other kids had been. My knees hurt, and couldn’t take normal, little-kid-leaning-on-mommy type of pressure. I hadn’t realized until then that I didn’t hug or hold him as much as I had the other kids because it hurt.
Then there was the day last year that I stepped out to shoot a few hoops with the boys, and the youngest two were astonished. “You’ve never played basketball with us!” They were thrilled. That was short-lived, because the first time one of them tried to dribble past me, I reached for the ball and cursed my rotator cuff. I had to stop playing. My kids don’t remember me ever playing sports with them. It hurts too much to run and cut and jump and reach.
This disease has stolen normal family life from my entire family, not just me.
Diagnosis – Although the disease itself has changed my life for the worse, I’d have to say that diagnosis has changed things for the better. With diagnosis came treatment: meds, PT, and information about what I’m facing. This is a good thing.
Support Forum – Have you ever read those flyers mailed out by hospitals? There are always classes about living with diabetes and heart disease and cancer and alcoholics. There are never any Living With RA classes. There is no local support at all. It was great, then, to find RA support groups online. Just like every 3D group is different, every online group is different, but after a while I found a group that I liked. It was great to get tips from those who’d been living with the disease for a while, and know there was hope that I’d feel better before too long.
Patient Blogs - There’s a whole community of patient bloggers. Many of them – even though we’ve never met 3D – I count as friends. We can share information about coping with our particular flavor of disease, share tips, and commiserate. Blogs are different than the online support groups. Who knew that a horrible disease would bring me some great friends?
MedBlogs – Physicians who take the time to blog can never comprehend just how much impact their posts might have on patients. There are a few that definitely changed my patient experience for the better. Knowing what doctors are looking for, they kind of information they need (and don’t need), what kinds of things patients do that annoys the doctor (so should be avoided), what patients can do to get better care, and some of the basic rules of the game has made a tremendous difference in how I interact with my doctors. My appointments take less time now, yet still address all the issues that need to be addressed because I’m better prepared for those appointments. I believe that I have a better view of the medical profession, and a better relationship with my doctors because of what I’ve learned reading medblogs.
If I could turn back the clock and somehow avoid getting RA, that would be be a good change. I’d still like to keep what I’ve learned reading medblogs, though. That’s been great.
This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J