Posts Tagged Disease

Living in Suspense

Me, worrying about all things related and unrelated to my symptoms and blood tests, prompted by that information black hole we call the Internet.

I had one week before my rheumatologist appointment, meaning one week to Google every related illness and RA horror story known to man. Cancer? Lupus? Rheumatoid Arthritis? Something worse? Permanent disability, 10-15 years off your life, systemic disease spreading, scary drugs, high medical bills. I read it all.

It was probably one of the scariest weeks of my life. I cried myself to sleep and came to terms with the worst case scenarios. High medical bills? I was about to turn 29 and loved my apartment, but I could move back home with my parents to save money. Disability? This one gave me shivers, but I could deal. I could work from home some days and adapt as necessary. Not being able to have children? This one sucked. It was a hard one to think about, but I even made peace with perhaps never having children of my own.

On Thursday, one day before my appointment, I got the call from the lab. “We got your results, and based on your blood tests, which show you’ve tested high for Rheumatoid Factor and Anti-CCP, we believe you have Rheumatoid Arthritis.”

“Shit,” I thought. “Um, OK, um…Thanks,” I said. I’d read, I’d mentally prepared myself for a range of diseases and this one wasn’t as bad as some of the possibilities, but it still stung. It still ripped me apart and made me wonder, “Now what?”

Apparently “now what” is spending the night at my parents like a kid and getting all my tears out, so that I wouldn’t cry at my appointment the next day. I was DETERMINED not to cry at the doctor’s. And, guess what? I didn’t. But that appointment’s the topic for another blog.

, , , , ,

Leave a comment

The Wonderful World of Self Diagnosis

Add Seasonal Affective Disorder to my list of self-diagnosed, but totally  – in my mind, at least – manageable issues (carpal tunnel syndrome, sports injuries, poor footwear choices, non-orthopedic office chairs).

Starting in mid-December, post half-marathon, I suddenly found myself in a state of sadness and fatigue. It was hard to drag myself out of bed. I couldn’t sleep at night – not because of painful wrists, just an undefined worry and discomfort. I got overwhelmed and tired in social situations easily. I was prone to bursting into tears (and I’m not much of a crier). My stomach had been thrown for a loop too. I lost my appetite and, with it, weight. Food didn’t seem to agree with me anymore, but I didn’t even want it (for a total foodie, this was just crazy!).

The only time I seemed to feel normal was after a couple cocktails, but soon that didn’t help either. Better than a cocktail was my bed.

I told myself I was just in a “funk” and maybe had a case of the winter blues. At any rate, I wasn’t myself and I wasn’t much fun to be around. I felt like my life had just crashed, and was crushing me under the weight of the rubble.

A pretty low point was the night I threw a party, but couldn’t seem to even lift my body up enough to sit. I finally guiltily snuck away and spent the night fast asleep in my friend’s bed, exhausted and anti-social.

In hindsight I think my body was doing everything in it’s power to tell me that things were not OK, to get me to finally listen. I’m curious how many people feel this flu-like depressive exhaustion with their RA. It’s something you don’t really think of as being related, but it is a powerful, powerful, destructive thing. It really did a number on my self-esteem to feel so low (energy and emotion wise), something I am still trying to rebuild two months later.

, , , , , , , ,

1 Comment

My Half Marathon and The Convenient “Sports Injury” Excuse

After finishing the Vegas Rock & Roll half marathon.

This post could also be titled, “When Self Delusion Makes You a Dumbass,” because, honestly, why had I not gone to the doctor?

But, there I was, training for a half marathon, my feet occasionally swelling up in pain. Being confused because my “sports injury” would magically switch sides.

Here’s the thing, in November, training for my half marathon, I felt powerful. I felt strong. I was running, doing boot camps, doing yoga, trying acro yoga, writing a book and making progress at work. I was a 28-year-old superwoman, elated that I had hit my stride.

The first weekend in December was the weekend of my half, and I rocked it. I made a decent time and felt great doing it. Afterwards, trudging back to the hotel, my swollen, sore feet were screaming. The half was a sort of turning point for me because I couldn’t just ignore the pain that seemed to flare up anymore. On bad days I started complaining to people who would listen. The general consensus was a torn ligament or a stress fracture. Some weeks it was fine, other times people would ask me why I was limping.

Still, STILL, I didn’t get it checked out. I barely even stopped working out even though I figured maybe a little rest would just heal it.

, , , , , , , ,

3 Comments

Ignorance is Bliss

St. Petersburg, Russia

It’s amazing the pain you can tolerate when you think you’re fine. Once my wrists felt better, I simply ignored them. Occasionally they would feel sore, but it wasn’t too bad,  it wasn’t waking me up at night.

Needless to say, I didn’t remain pain free for long. I began feeling pain in my feet. The bottom of my feet would just be sore. I blamed this on bad shoes (I’m cheap AND I like heals, a deadly combo!) and working out. It wasn’t so bad anyway. Plus, I was planning a mega-vacation to Europe, so I was blissfully distracted.Looking back now, I’d say I had a major flare up during my first week in Europe. At the time, I thought I was walking too much and had brought the wrong shoes. Looking back, I can feel more empathetic and forgiving toward myself about how painful it was to walk around. At the time, I bought gel inserts and foot cream and told myself to “suck it up.”

Istanbul, Turkey

I spent a week walking around with painful, swollen feet. The days we walked a lot were bad. I had to take breaks, which was so unlike me that I would beat myself up over it. Every chair or bench I saw, I’d take a break (the museums in Russia are huge-I thought I’d never make it through the Hermitage!). The days we were off our feet, I felt much better. Luckily, I was distracted by Russia, with all its charm and beauty. And, mysteriously, by the second day in Greece, my feet were much better. I felt normal (of course, I was rapidly developing a new pain threshold and standard of normal).I got back from Turkey rejuvenated, energetic and ready to start training for a half marathon.

, , , , ,

1 Comment

Hindsight is a Bitch

Hi all, especially those in the RAD new community I’ve found myself a part of. I’m a month into life with RAD and I’ve decided to start a blog about my experiences in case any of you may be able to benefit from hearing about them. I think it’s important to start at the beginning. I’m talking pre-diagnosis. I’m talking the things you look back on and think, wow, I should have gone to the doctor. I should have known.

Oh well, hindsight, as they say, is a bitch 20-20. So, with the benefit of what I know now, I can tell you that my symptoms emerged in my wrists, at age 27, more than a year ago. It started harmlessly enough, my right wrist became painful to move. At the time, I was doing a lot of computer work – graphic design, typing, you name it – so I diagnosed the problem as carpal tunnel syndrome from using my mouse too much. It flared while working on my computer, justifying my hypothesis. I felt it during yoga, especially downward dog.

No, that's not me (though I wish it was!), it's Gretchen Bleiler.

Then my left wrist hurt. Symmetrically. Despite that, I thought that the left wrist was a snowboard injury from a hard fall. So I bought a wrist brace and wore it snowboarding (it didn’t seem to help).

Then it became Painful. Painful with a capital P. Wake me up at night painful. Losing sleep painful. Creeping from my wrist to my finger joints painful. But the pain would be worse at night and in the mornings and fade during the day, so it was manageable. I could still work, I could still workout. It was annoying, but it wasn’t life threatening. So I complained to my mom, and saw an acupressure practitioner, and thought maybe I was going crazy.

Then a couple of months later, it just got better. My job had changed a bit and I was doing less design work, so I thought that was proof that this whole ridiculous wrist pain was just some computer-overuse issue.

Looking back now, maybe going to the doctor at this stage wouldn’t have done much good, but who knows? I’ve read a lot of your (the RA community) stories about mis-diagnosis, and perhaps that’s what would have happened. I think it’s a blessing considering the amount of pain I was in during that flare, but I don’t have any permanent damage in my wrists.

, , , ,

1 Comment