My AARP Membership

I remember the first time The American Association of Retired People sent me a personalized membership card. I was 16. I remember thinking "Why, do they think I'm old?" Oh yes, I have Arthritis. Initially, I was slightly offended. It's enough that I am usually the youngest in my rhuematologist office and always the youngest at the glaucoma specialist office, but now they think I'm old enough to join the AARP! However, each year a new AARP card would arrive in the mail. I often thought about trying to join, they do offer great discounts and the membership often comes with a free rolling travel cooler. SCORE!

As humorous as this clerical error often is, it is still a reminder of the stigma that Arthritis is an "old person's disease." There are many organizations and people trying to raise awareness that Kids Get Arthritis Too , but there is still a long way to go. On the other hand, Arthritis does in fact often make me feel like I am old enough for the AARP and often I can relate to their aches and pains more than I can relate to my peers running frequent 5k's. I wake up stiff, achy and sore. My knees creak and hurt as I walk down stairs. I have used a wheelchair in my past. I have already had two cataract surgeries and I have ongoing glaucoma eye disease. I have used reading glasses since I was 15 years old.

So here I am living with the body of an AARP member but navigating life as a late 20 year old. This desire to want to live out my youth carefree and energetically, but still navigate the challenges of my Arthritis will consistently be something I struggle with. Fortunately, I no longer desire to stay up to 3 am, eat macaroni and cheese for every meal, or spend 4 hours standing in bars only to walk miles home, as I once did in college, and my body thanks me for it. However, I am also no where near ready to sign up for an AARP membership. I have a lot more "youth" to enjoy, regardless of what my Arthritis or the Association of Retired People think about it!

Disclaimer: I have nothing against the AARP and their organization. I will join as soon as I turn 50 and can't wait to go to the movies for 5.00 or get a free donut at Dunkin Donuts. Just not yet!

The Eye Ultrasound (and other strange medical tests)

This morning I had a follow-up eye doctors appointment. I have been seeing a retina specialist for about two years to follow a cyst in my right eye. Initially the discovery of this eye cyst was very unnerving because they were unsure of it's origin or pathology.  However, it seems that somehow the cyst is in the perfect place, between all the important eye structures and my glaucoma tube shunt implant. And as long as it remains there, happily not bothering anyone, no one seems overly concerned anymore. As a result, every 6 months I visit this specialist and have two eye tests done, photographs of the inner parts of my eye and an eye ultrasound. When I first heard I needed an ultrasound, I thought "wait, how does examining my stomach tell you anything about my eye?" There are indeed a ton of different types of ultrasounds and ways to use ultrasounds. Physical and occupational therapist often use ultrasounds to provide deep heat to joints, muscles and tissues. An eye ultrasound is not a painful test but it continues to be one of the strangest sensations I experience. I am by no means uncomfortable with eye drops or touching my eyes. I have worn contact lenses since 5 years old, used eye drops since before then and have had four eye surgeries. However, this test is still very strange! First, they use numbing eye drops to make your eyes more comfortable. Then they use an ultrasound stylus with ultrasound gel on it and rub it all over your eyeball, taking pictures in certain spots. It feels as awkward as it sounds. There is cool gel being rubbed onto and all over your eyeball, your vision is blurry and sometimes you enjoy the pleasant experience of cool ultrasound gel running down your cheek. Fortunately, the test is over quickly and you can move on to more pleasant tests..

My second least favorite medical test is the visual field eye exam. As a result of my glaucoma I need this test every 6 months to make sure that my visual field (the amount you can see in the periphery when your eye is focused on a point centrally) is stable. For this test you close one eye and place your head inside a giant circular bubble. These bubbles remind me of the chairs Will Smith sits in during
Men In Black. Then they flash small bright dots in various directions inside this bubble and you click a pen every time you see a dot of light. Testing each eye can take up to 5 minutes but it often feels a lot longer. I once made the horrible mistake of scheduling one of these tests the day after St. Patrick's Day while I was in college. I had gone out the night before and was not feeling myself the next morning (read: extremely hungover). This may have been the worst possible test to take hungover as every flashing light made me feel nauseous, my eyes were tired and dry and I am sure I missed seeing many lights that day. I will never make that mistake again.

Facing Forward Feature on From This Point Forward

Check out my interview on Mariah's blog, From This Point Forward. She is posting a series called Facing Forward. Facing Forward is a series that shares the lives of people living with arthritis and other invisible illnesses. The goal of the series is to see how we are similar and how we are different – and to remind us to keep moving forward because we aren’t alone!  Her blog is a fabulous resource for anyone living with Rheumatoid Arthritis, espeically if you are thinking about starting a family. Her honest, hopeful and candid posts about her path to pregnancy and parenthood are inspiring to us all!

Read more here!!!

The White Lie

"Did you hurt your knee?"

If you live with JRA you have inevitably heard this question and have been faced with the dilemma of telling the complicated whole truth or just a white lie. As a child in middle school, the occasional mean 6th grader would ask "why do you walk funny?" I would just ignore them because explaining the truth would take far too long to sustain a 12 year old's attention span. However, the comments and questions don't stop as you graduate high school.

Recently, my right knee has been slightly stiffer than usual, causing me to occasionally limp. As I was walking into work a co-worker, who I barely know by name, asked if I had hurt my knee. He was probably just trying to be nice, initiate some casual conversation and voice his concern. However, I barely know his first name and I only see him once a week for a few hours in passing. I decided it would be much easier to tell a white lie. "Oh, I hurt it skiing." Then delve into the complicated past of my JRA. He responded, "Oh yeah, I've had some knee injuries." We connected over our mutual "injuries" and the conversation moved on.

Sometimes I feel guilty about telling these white lies, but I know it will save the inevitable follow-up questions. "Oh, you're too young for that." Or my favorite. "My dogs has Arthritis too." Yes, that's exactly the same thing... Occasionally, I will take the opportunity to educate people about JRA to help build awareness and advocacy, but some times you just want to to get through the day without having to explain your life story to everyone you meet. Sometimes you just want to be able to blend in without the questions. Sometimes telling a little white lie is what it takes.