Posts Tagged Chronic

Loneliness vs. Solitude and the Quiet Spaces In Between

Edward Hopper Painting

Since I was diagnosed with RA, I have been more understanding with myself and my own body. This often means that rather than staying out, or going to get a post-work happy hour, or making social commitments back-to-back like I was so used to doing, I make more time for me to just relax.

I cherish this time to myself to read a book or take a bath or catch up on a TV show that no one else cares to watch (Glee!). This time is beautiful solitude.

But there are times, when having to turn down plans because I’m too tired, or just adding up all that solitude turns into something else. Suddenly, I’m not basking in the self-indulgence of my “me” time, I’m agitated and wishing someone was there with me, or that I was anywhere else.

I came across this article in Psychology Today, 10 Quotations and Reflections on Loneliness, that really rang true for me.

In case you don’t follow the link, here’s one quote to leave you with:

“Solitude is fine but you need someone to tell that solitude is fine.” —Honoré de Balzac

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Positive Thinking is Positively Powerful

I went to a luncheon/talk today that focused on meditation as a powerful healing tool. The speaker talked about the way meditation can actually force real changes in your brain and body. The concept of neuroplasticity (literally, the idea that brains are more malleable than we had imagined) is growing.  For more on this, check out this NPR story.

I have to admit, I don’t do meditation (though maybe I’ll try now…). I find it difficult to sit still and really turn my brain off. I do however do yoga, which I feel like I get a lot of calmness, flexibility and strength out of.

The speaker today shared some “tools” for engaging in a more positive, calm brain state, or, as she put it, a para-sympathetic brain state. I’ll share my two favorite tools:

The first is simple. When you’re worried about the future, as in, Oh my god, what does RA mean for my life? Will I be disabled?, tell yourself, “This is going to be better than you could ever imagine.” Worried about giving a speech? This is going to be better than you could ever imagine. Concerned about an upcoming doctor’s appointment? This is going to be better than you could ever imagine. I think you get the point…

The second tool came from an audience member. He was an older man, and he said that throughout his life, he’d always prided himself on his ability to solve problems. He said he’d recently gone to a counselor with a problem that he was having a lot of trouble solving. He told us that the counselor changed his entire perspective and fixed the problem with some very simple advice: “Approach this not as a problem, but as an adventure.” With that, the man said he could stop worrying about something that couldn’t be “fixed,” and could start focusing on living again.

I think this advice is great. My new mantra: RA is not a problem, it’s an adventure. An adventure that is going to be better than I could ever imagine.

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This Sucks

“It really sucks,” I told my mom, fighting back tears.

“I know. It really does,” she replied.

And that is the epitome of what I feel right now. Two days ago, I felt great. I was sure my meds were doing their magic. Today I’m sore, tired, it hurts to walk, my feet are swollen and my stomach is lurching.

So, yeah, it just sucks.

It sucks to be in pain. It sucks not to have control. It sucks to be young with this disease and heading home while all of your friends go to a concert because your feet hurt, you’re tired, and you can’t drink because of the methotrexate.

It sucks to feel sorry for yourself. It sucks to have people feel sorry for you. It sucks to have people not understand. It sucks to never give yourself a break.

I was going to end this post on a light note. To tell you that despite it sucking, it’s not your whole life. That you aren’t your disease and it doesn’t control you. But here’s the thing, I don’t feel like it tonight. I’m tired, I’m achy, I’m lonely, and I want a moment to wallow in self pity.

Tomorrow is a new day, and I’ll be ready with a better outlook and a brighter smile. But tonight, don’t tell me it’s going to be OK. Just take a note from my mom, nod and agree, “Yeah. It really does suck.”

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Meeting My Rheumy: Well, at least I didn’t cry.

I finally had my appointment with my rheumatologist today after a week of going through potential outcomes. I brought my mom with me to have another pair of ears and the support.

The diagnosis was immediate: “You have rheumatoid arthritis.”

I can’t say it didn’t suck to hear it like that. I’d expected a little bit of mystery, deliberation, maybe a “you’re OK.” But I also can’t say I was surprised. I nodded as he went over the reasons why he was sure – positive for rheumatoid factor and anti CCP, bone erosions, clear inflammation.

Then he asked questions that shed a light on ALL of the symptoms I’d been feeling but hadn’t linked to my “sports injury.” Have I been tired? Down? Depressed? Experienced insomnia? Anxiety? Stomach issues? Yes. Yes. Yes. Yes, yes and yes. Majorly. Dry eyes and mouth? No (something I don’t have, yeah!).

I walked away from the appointment with a diagnosis, a plan and an odd sense of hope and relief. My rheumy believes we can get this into “remission” in six months. My rheumy says I’ll be able to have a family in the future if I choose to. My rheumy says that we’ll minimize permanent damages. That there are a lot of good drug options.

So, of course I left the appointment sad, with a million additional questions and overwhelmed at my new drug plan – A cancer drug? Giving myself injectables? But I was also relieved to be doing something and to have a name to put toward everything I’d been feeling.

I promptly filled my prescription for methotrexate, prednisone and folic acid and started the process for getting insurance approval for Enbrel.

I went to happy hour with my mom and close friend, nervously going over the prescription info and bringing my friend up-to-date.

And then, with a ton of trepidation (Is this severe of a treatment really necessary? What about the side effects? Will it make a difference?), I popped those six itty-bitty MTX pills and began my new life. A new life on drugs, but also a new life on the pathway to some sort of relief and recovery.

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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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