Dr Google Was Sort of Right

08.23.12

I forgot to follow up with the funky knee. Last week I skipped the orthopedic surgeon and headed to my rheumatologist. This ended up being a really great decision for a number of reasons. My rheumatologist is incredibly conservative and never overbooked. Every appointment is timely and we’ve never been rushed.

Dr. Rheum gave my knee a check and suspected that I might have a torn meniscus (just like Dr. Google suspected). What he made very clear was that small tears to the meniscus can be treated with physical therapy and that although the laser surgery is effective with a quick recovery you do lose volume with the meniscus and someone with Rheumatoid Arthritis (me) should be very careful about that. It should be a last resort. Before sending me off for an MRI he said to me, “Think of an orthopedic surgeon as a man with a hammer. Sometimes men with hammers think everything is a nail.”

So off I went to get my MRI. I immediately fell asleep in the machine (I know, weird) and just a day later the doctor called.

Good news! The meniscus isn’t torn. Bad news, there’s a half inch cyst resting on top of the fibula. Good news! They respond well to physical therapy and ultrasound. Even better news! There’s no sign of arthritis in the knee. This is the best news of all.

I took my script for physical therapy and called the place where Jane recently had such great treatment and the receptionist put me on hold. She then picked up the phone to put me on hold again. When she asked me to hold a third time I asked if I should call back later, “Oh yes.” She gushed, “Tomorrow would be great.”

So… can anyone recommend a great physical therapist who thinks that the minutia like answering your phone actually matters?

About That Chronic Indigestion….

07.3.12

I’ve got no clue what’s going on with my body. I’ve got this crazy heartburn that I only experienced during pregnancy. I’m fiddling with medicines and assuming that’s the culprit. I’m trying to ignore it and eat Tums but it’s getting tough.

Before I left for Phoenix I’d taken an ALCAT blood test with PreviLean. It’s basically a blood test to find out if you’re sensitive to certain foods, molds and chemicals. For the next few months I’ll be partnering with them and sharing my progress with y’all.

Starting with PreviLean is so weird in a wonderful way. First of all your insurance may or may not cover it so it’s strange to engage a medical team directly. I don’t know that I’ve ever had a blood test that wasn’t part of a check up or spoken to a nurse that wasn’t in a doctor’s office. There was something strange and liberating about having a kit for a blood draw come to my house. If I wasn’t a nice Jewish Girl from Los Angeles I’d have called the toll free number and a phlebotomist would have been sent to my home or office to take my blood. Since I am a nice Jewish Girl from Los Angeles I’m pretty much guaranteed that someone in the family has been to medical school.

So before leaving for Phoenix I had the test in my car and was going to call and have someone draw my blood when I realized I’d be driving past my Mom’s house. “Is Doc around?” I asked her. “Why?” She asked me. “I need fake Doctoring.” I replied. A few minutes later this was the dining room table.

Don’t worry, it’s safe to eat there now.

Actually my Stepfather used to take my blood a lot. I am a passer outer (that’s the scientific term for it) and it really wasn’t that big of a deal until I was pregnant with Jane and all of a sudden they were taking blood every few weeks. After fainting in the OB’s office we struck a deal. I’d have my Stepfather take my blood and he’d send the results to the OB. It worked out perfectly. I’d go over there for dinner, we’d head to a sofa where I’d give him my arm and then when I’d pass out there would be a soft landing. Of course having the cats crawling all over me lent a special touch of hygiene…

So it was this weird sense of taking control of my body by opting into a test that my insurance might say is not medically necessary but could become a factor in my health and at the same time having my Stepfather drawing blood as he did 13 and then 11 years ago when I was pregnant. Strange in a good way I suppose.

Now I’m here with my weird heartburn wondering if the ALCAT test will tell me that I can’t eat my favorite foods. I’m concerned about cheese and jalapeños, I’m not convinced I can live a happy life without either of those things. I’ve recently given up grains and sugar (except that cake last night… which totally wasn’t worth it) and I know that life is unpleasant without bread. I’m sort of excited about trying a healthier way of eating and also dreading it because I’m afraid of them telling me I have to give up what I love. I’m more afraid of adding more medicines to my regime so I’m hopeful that the test can help with the inflammation I’m living with.

Also, I gave up grains and sugar because my friend Anna started doing a podcast with a local personal trainer, Vinnie Tortorich. The podcast is amazing but it’s creating a little friction in my life. I love spending time with Anna and usually I can get a solid hour with her while she gives me recipes and anecdotes and we talk a lot about food and exercise. Now I’m lazy, I just listen to the podcast and text Anna because I feel like I’ve had a visit… which of course I haven’t. So I guess the podcast is technically breaking us up.

You really do want to listen to them all, here’s a link for them on itunes. If you just want to listen to the most recent one and you’re not interested in itunes you’ll want this episode. In it Anna asks Howie Mandel (yes, that Howie Mandel) if the carpet matches the drapes. Being bald and all there are some references to “hard wood”. So ummmmm if you want to know about Howie Mandel’s penis I’m pretty sure this podcast is the only place you’ll get that bit of chatter.

 

 

 

 

Fairbanks Alaska, GoPro and the Democratization of Science

04.14.12

I’ve hardly blogged because this week has been a whirlwind of activity. The folks at GoPro brought a few bloggers and invited MSM to join them on an expedition with some rocket scientists while we launched weather balloons into the night sky.

Here’s how it unfolded.

Monday:

Bring the kids to school. Go home and pack everything I own plus some of my friend Alison’s stuff into a bag. My tennis partner has offered to drive me to the airport. This, I think is awesome, later I will remember why this is not awesome.

At 3pm I leave Los Angeles for Seattle. Bulkhead seat and a non chatty seat mate. Huzzah!

I spend the dinner hour in Seattle eating something and wishing I was there already.

Score! I’m in First Class from Seattle to Fairbanks. I have four hours of a flight attendant being nice to me. I try to watch the Descendants. Maybe on a big screen it’s not a terrible movie? I realize that I’ll never like things the rest of the world enjoys and I take a nap.

Arrive in Fairbanks close to 11pm, the sun hasn’t set fully. I’m relieved to meet some of the folks on the trip. Everyone is nice. Everyone is smart and interesting. This is unusual and lovely.

Tuesday:

Breakfast and a trip to the grocery store. I spend the next four days pulling organic apples and baby bel cheese out of my purse for anyone who might be feeling peckish.

Not everyone has arrived and we can explore Fairbanks for the day. We decide on the Chena Hot Springs and I’m all Reddit told me this would be good… you know because everyone should plan their trips with Reddit (and they should).

We toured the hot springs, the ice sculpture museum and the geothermal energy production. They are completely off grid and producing their own lettuce and tomatoes year round. At the ice museum we enjoy appletinis. I don’t typically enjoy appletinis but these are not to be missed.

After soaking very briefly in the hot springs we head back to the hotel for a powernap. On the way back to the hotel we see a moose. Kelly and I scream MOOSE so loudly that our host surely must be rethinking his entire career.

We have dinner, a few more people arrive including Stefanie and at 11 pm we head out to launch the first of three weather balloons. This is the map we use to get there.

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Remarkably we get there. Apparently there aren’t many roads in Fairbanks. We pile out of a fleet of Suburbans and stand around waiting for something to happen.

The scientists fill the balloons and attach the payload. The payload is a half dozen GoPro Cameras, a GPS, some bacteria and an American Flag. The balloon will go about 20 miles up before popping and we’ll track it with the GPS and retrieve it.

 

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At about midnight an arc appears in the sky. It’s light green, almost lemony looking. At the southernmost point of the arc red spikes start to glow. I think it must be the city of Fairbanks but then I realize that it’s the show. During the next two and half hours the sky swirls and explodes with rays of light turning red, green and purple. They shine and dance and we crane our heads and delight in what we are seeing.

I stand with Dr. Bering and ask him about what I’m seeing and he explains solar flares, solar storms, plasma and energy. I nod and I understand what he is saying but know that I am unlikely to remember. I wish my husband was there.

Reluctantly we leave at 3.30 in the morning and try to get some sleep. Sleep is hard to come by. We’ve just seen the majesty of science and I’m too excited to sleep.

Wednesday:

It’s too hot for dogsledding in the afternoon so it’s been pushed to 10am. We have a 9am breakfast and we pile back into the Suburbans.

Dogsledding is awesome. The dogs are small, the sleds are fast the mushers are Alaska’s version of surfers. They’re all passionate, fit and adventurous. The only unfortunate part is that the dogs are incredibly affectionate and they smell slightly worse than goats. I refuse to believe that Junior is related to them.

After dogsledding we grab a quick lunch and regroup. There is an optional trip to snowshoe out to retrieve a payload that had been launched a few days before. It’s approximately a mile away from the road. Maybe a three hour trek.

There aren’t enough snowshoes. At first I try being polite and saying I’ll do what’s best for the group and then I remember that this is my first and possibly my only trip to Alaska and I really want to go snowshoeing. They come up with another pair of snowshoes and we hike in to the middle of nowhere.

It’s magnificent.

Sometime around 8pm I’m lifting my leg out of two feet of snow and warm washes over me. This is the first time in two years that I’m not arthritic. I’m fighting back tears and I’m standing at the edge of the earth and my hands, hips, knees and ankles don’t ache. I’ve ached for so many years that I fear I’ve forgotten how it feels to not hurt.

There’s snow to my knees, my coat is too heavy for the relatively warm weather, I’m dripping with sweat and I’m crying a little because I think, just maybe, that I’ve hit that magical remission that the doctor had said we might get.

Here is the payload.

We get back to the Suburban by 8ish and pile in wet and smelly. Heroic we join the other 20 or so folks at a really nice restaurant in Fairbanks. Dr. Ben Longmier holds the payload over his head victoriously and everyone cheers.

There is a curious absence of ego. Perhaps that happens easily in a room where everyone is highly accomplished?

After dinner it’s back to the hotel for just 15 minutes and then back to our hilltop site to launch two more balloons.

This night the northern lights give a show that makes one woman weep. There are rays of light zooming into the sky with such power and such force that it’s hard to believe that we aren’t in a movie theater or an observatory.

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Luke Kilpatrick took some amazing photos with a camera loaned to him by Robert Scoble. Luke was incredibly generous with his shots and shared them with everyone asking only for attribution. He explained that Robert had lent him the camera and he would share with same openness.

Which brings me back to the fact that this experiment costs approximately $1,500 for the first trial and significantly less thereafter. Science doesn’t require a million dollar lab.

I was tired and folks started leaving at 3ish. Back to the hotel at 3.30 again and it was a little easier to fall asleep this time.

I was sad to leave Alaska but thrilled to be reminded of the magnificence of the universe.

Thursday:

7am wake and pack.

7.45 go to the airport.

8.30 am Score first class and settle in to sleep. I don’t realize the plane has taken off. I didn’t know there was a delay. I was sleeping. Wake up ravenous and the flight attendant gives me a plate of scrambled eggs. I touch them to my tongue and realize they are shit. I am starving and eat them anyhow. I quickly fall back asleep.

Noon: Disembark the plane knowing we are late for the next one, look around and realize we are getting back on the same plane. I moan about how shitty my seat is and score another first class upgrade. Lucky me.

12.30 board the plane with a splitting headache.

12.45 lose breakfast.

12.55 apparently there was more breakfast.

1.15 angry flight attendant takes pity on me and gives me crackers she’d brought from home

1.25 goodbye crackers

At this point all of first class is using the lavatory at the rear of the plane. I’m too tired and puny feeling to even be embarrassed by this.

3pm in the taxi line at LAX and I have to let three cabs go. They smell so awful that surely I’ll retch. After some frustration I tip the guy at the curb nicely and find a cab driver that neither douses himself in cologne nor smokes.

5pm I’m cooking dinner at home. Because… ya know… they’re hungry.

Living With Rheumatoid Arthritis Almost a Year Later

07.24.11

People ask me about my Rheumatoid Arthritis. Most days I smile and say something to make them feel better, because really that’s why they’re asking.

I went from 60 to zero in a matter of days. I went from running, loping really, long distances to needing naps twice daily and being unable to uncurl my hands. I was fit and trim, and then inactivity and medicines left me bloated and queasy. The uncontrollable parts of it all makes me uncomfortable, and I sense it does the same for the people around me.

I’m almost back to being me. I’m a little stiff in the mornings, and I can’t exercise for more than two hours. I’d like to play a proper tennis match, but if I stop exercise after 90 minutes I seldom ache in my joints, when I pass 90 minutes my hands, hips, knees and ankles ache for 24 hours. I’m confident that this will change and I will return to proper tennis.

The Simponi saved my life. It didn’t cure me of Rheumatoid Arthritis, yet, but the results have been so fabulous that if this is as good as it gets I’m really happy. I’m still taking hydroxychloroquine and we may add back the methotrexeate or some other chemo, but for now the two medicines seem to be knocking things out nicely.

I exercise every day. I exercise partly because I’m a person that needs to move and it makes me happy, and partly because it’s an important part of living with Arthritis. I don’t take my motion for granted as I once did, and I’ve added yoga back into the mix. I also spend at least 30 minutes every afternoon floating in the pool. The absence of gravity is wonderful.

When it was clear that I had RA I felt my world crashing in on me. I thought it was the end of everything. Now it’s just a bump in the road.

 

Why I’m not Fighting Rheumatoid Arthritis

04.13.11

I have Rheumatoid Arthritis and I’m not fighting it. I’ve posted updates for y’all to read and to see at various times, and I’ve worked hard to assemble a team of physicians that can help me get into remission.

I’m not in remission and I’m not fighting this thing.

I’m in pretty good shape these days. I come dangerously close to actually making a fist with my right hand and yesterday and today I was able to run in the canyons without needing narcotics afterward. That is a huge improvement. I haven’t opened a bottle of Advil in several weeks, my energy level is mostly high, and steroids aren’t a part of my life any longer.

Still, I have symptoms and discomfort. I have swelling and some numbness and tingling. If it never progresses past this point this is Arthritis I can live with. Sadly, it’s improbable that I won’t see some progression unless the medicines get this into remission.

You see the medicines are the ones that need to fight the arthritis, not me.

I know everyone loves to fight their diseases and Fuck Cancer is a wonderful sentiment. Recently I was with my friend Becky who had been treated for cancer and she explained to me how much she disliked people talking about her “fight”. She talked about the people who had cancer but died, is that because they didn’t fight hard enough? Were they not strong enough? What if your cancer is just deady like the pancreatic cancer that killed my Grandmother? Was she not up for a fight?

My children have a mother with RA, which is an autoimmune disorder closely linked to leukemia. Of their four blood grandparents three have, or have been treated for, blood cancers. Should I raise my children to be fighters just in case? Please understand that my single greatest fear is that Jane or Alexander will have one of these disorders. It’s a fear so overwhelming that it wakes me up at night, I feel cold like I’m dead and like cancer is just sitting on my chest like a ghost from a cartoon.

I’m not a physician. I’m not a scientist or a researcher. I’m a 41 year old woman with a debilitating diagnosis and an overwhelming desire to see her children remain healthy. I’m not fighting arthritis. I’m living with it, and I plan on living nicely. If my illness is to progress I wouldn’t want to be made to feel like it’s because I didn’t fight hard enough.