Posts Tagged Auto Immune Disease

Feeling Beautiful (or at least trying)

Despite not looking like I have a “disease”, RA has certainly done a number on my self esteem. It’s something about knowing that there’s something wrong with you. It’s something about being so hyperaware of your body and all its flaws.

Anyway, given that, I really enjoyed this article: http://www.islandmeetscity.com/2012/01/feel-beautiful-autoimmune-condition/ Hope you do too!

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Finally, A Visit To The Doctor

I’m not exactly sure what my final straw was. My right foot – my “sports injury” – had flared up again. I’d spent an extremely frustrating ski weekend in extreme pain, hobbling up and down stairs, my feet so stiff they wouldn’t walk properly. I even told my family, “I feel like I have arthritis. Why am I such a gimp right now?” The response of course was, “You don’t have arthritis. You’re too young to have arthritis.”

So I popped some Advil, stuffed my angry feet into ski boots and carried on. But after that weekend I finally made the call, I booked an appointment with an podiatrist, sure she would find a stress fracture.

She remarked at my swollen feet and asked me which one hurt. “The right one,” I said. “Well, actually both.” I knew it was odd, but I explained to her my theory of how I must run funny and would hurt one foot and then over compensate with the other, causing both to be swollen and painful.

So the doctor took an X-Ray of my right foot. I sighed in relief as I waited for the results. Maybe she would tell me to stop working out and I’d be in a boot for a month, but at least I would finally be healed. Then I could get on with my life and stop dealing with this stupid pain.

Disappointed is the word I would have to use to describe my emotions when my doctor told me, “Good news! You don’t have a stress fracture!”

I was really hoping for an injury. One I could stick a cast on and heal and get better.

My disappointment turned into confusion when she proceeded to show me the X-Ray of my stress fracture-free foot. An X-Ray that showed that bone in my little toe had eroded. She explained, as lightheartedly as possible, that this could be a sign of lupus or Rheumatoid Arthritis and that I should get blood work done and make a follow-up appointment with a rheumatologist.

Excuse me? Did she not hear me? I was just there for a sports injury. Something I did running. Was this really necessary?

But more than denial, I honestly have to say I was scared. I was scared because deep down I knew that something wasn’t right, I just wasn’t sure what was wrong.

I went to a work networking event that night and told my partner and friend about the trip to the doctor. I heard my voice shake a little as I told him what they were running lab tests for. That’s when I understood how afraid I was. That’s when it felt real. My eyes welled up, and he gave me a hug, you’ll be fine. I nodded, while internally making a list of all the things I would have to Google when I got home.

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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.

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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.

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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.

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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.

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