Friday, May 29, 2009

Health Care in America

This week's New Yorker Magazine has a great article on the rising costs of health care in the United States... it's a long read, but a good one. Physician and writer Atul Gawande rips open the dirty secret of (some) doctors over-prescribing procedures in order to make a profit. It is a fascinating read about how the bottom-line can alter the quantity, but not quality, of medical procedures you may be prescribed. Here's a great quote (from a conversation with some doctors in McAllen, Texas, the most expensive place to get health-care in the country):

I gave the doctors around the table a scenario. A forty-year-old woman comes in with chest pain after a fight with her husband. An EKG is normal. The chest pain goes away. She has no family history of heart disease. What did McAllen doctors do fifteen years ago?

Send her home, they said. Maybe get a stress test to confirm that there’s no issue, but even that might be overkill.

And today? Today, the cardiologist said, she would get a stress test, an echocardiogram, a mobile Holter monitor, and maybe even a cardiac catheterization.

“Oh, she’s definitely getting a cath,” the internist said, laughing grimly.

Here's another great snippet - about preventative care in high-cost areas:
To make matters worse, [researchers] found that patients in high-cost areas were actually less likely to receive low-cost preventive services, such as flu and pneumonia vaccines, faced longer waits at doctor and emergency-room visits, and were less likely to have a primary-care physician. They got more of the stuff that cost more, but not more of what they needed.
The article doesn't turn all docs into bad-guys, no worries. But it certainly points the finger at doctors who are watching their personal bank accounts more than their patients' and the country's. It's really worth a read.

Wednesday, May 27, 2009

N=1 - What I learned in Germany

European travel - well, any travel - can bring the most amazing surprises. Around a corner, you find a quiet courtyard with a fountain that sparkles in the sun. One of your favorite paintings is larger, or smaller, than you expected it to be. Or, sometimes, if you can stop long enough to think about it, you even learn things about yourself...

I'll resist the urge to write a travelogue here; but it was a great trip. I learned a great deal about German history, and how it affects German culture. And, surprisingly I learned a great deal about my kitchen back in Portland, and about my right knee.

As regular readers of my blog know, my primary worry about my trip involved the 4 flights of stairs to my brother's apartment (and my bed) in Dresden. I'd had a lot of pain in my knee before I left; the psoriatic arthritis seemed to have settled into it.

But unexpectedly, my knee felt fine in Germany. The plane trip made me stiff for a few hours, and my hips really ached after a day walking in Berlin. But my knee was no trouble. Sure, I had a prick of pain here and there, but nothing like at home. In Germany I never once pulled out my little travel heat pack, or asked my sister-in-law for ice.

But... within 12 hours of being home in Oregon, my knee started aching again. By 24 hours, the fire was back. Why was I well in Germany, with all the stairs and walking (not to mention the coffee, chocolate and other auto-immune diet no-nos I was consuming)? Why was I hurting back at home?

Scientist that I am, I started analyzing my behavior in my own house, compared to Germany. At home, I'm mom (and wife), and having come home to a sick husband, I was spending a great deal of time in the kitchen... going from stove to sink to counter to fridge to dishwasher... over and over. The first day back I must have spent 5 hours in the kitchen, cleaning, cooking, making lunches, etc.

What I discovered surprised me. It seems that every time I make a turn in my kitchen, I push off with my right knee, and make a counter-clockwise turn. Before I left for Germany, I was cooking, prepping lunches, packing for myself, turning, turning. Coming home, it was the same. But in Germany, I was only walking straight - no twisting. My German family spoiled me and I didn't do a lot of cooking, and I stood still in their tiny kitchen while I did dishes. I walked for miles, but didn't do a lot of pivot turns.

I had no idea my own kitchen was my own worst enemy. I would never have known, if I hadn't gotten away from it, and come back with a healed knee and a new perspective.

So, here's the moral. If something hurts, don't assume that it is just because your disease is taking over. Take a day, and analyze every move you make, like those students in the movie Fame do in their first year of acting class (just watch the movie - you'll know what I'm talking about).

You may learn something. I'm moving slower now, and turning clockwise instead of counter-clockwise whenever I think about it. My knee is better already.


Tuesday, May 26, 2009

Aloe Vera treats Plaque Psoriasis

This just in - a study in Thailand demonstrated that topical aloe vera was possibly a better treatment for plaque psoriasis than topical steroids. Here's the link, and here's a quote from the investigators:
"Although contrary results were reported from two previous placebo-controlled studies, our study showed that aloe very cream was more effective than 0.1% triamcinolone acetonide cream after eight weeks of treatment".
Now, keep in mind that these results did not reach statistical significance. However, the aloe did beat out the steroid in only 8 weeks.

I wonder if my psoriatic arthritis would go away if I started drinking the stuff. Here's a link to a post claiming it would. (this is not a study, though, just an opinion).

I have been feeling like a big chemical cess-pit lately, so this study certainly caught my attention. I like when research proves that natural remedies work - it makes my scientific preferences feel at peace with my hippie soul.

N=1 - Hello again

I'm back!

Back from Germany, where I discovered the pleasure of a new coffee drink, the challenges of Berlin and the sticky hugs of my niece.

Back from my grandmother's memorial service, which was warm and heartwrenching and the fastest trip I've ever taken (Portland-> Walnut Creek-> Portland in 12 hours).

Back from a week of worry - my husband has been slammed with his worst Crohn's flare yet. I had to shorten my Germany trip, and come home to a skinny, tired guy facing a lot of scary medical choices. The kisses I got from him and my kids made the abridged trip worth it, though.

And, back from my second Remicade treatment. WOW. Try being jet-lagged, in mourning, and then infused with that sleepytime drug. I think I slept for half of last week.

But I've missed the blog, I've missed the chats, and I've missed putting the random thoughts in my head on the screen .

I hope you're all still out there.

I'm back.

Thursday, May 14, 2009

Of bathtubs and berlin

I will upload pictures soon, but wanted to share that I had a fun tub experience in Berlin. My friends who are renting an apartment in Berlin moved into their sight unseen place and discovered a shower stall that is about 3 1/2 feet deep, with no entry. They have a tree-stump next to it that you can use to climb up and hurtle yourself into the shower "pit".

I was very intimidated by this tub! How was I going to get over my own personal Berlin wall?

Well, I managed. Some stump climbing, some sliding, some swinging of legs and I was up and over. Back out was easier than I thought it would be too.

But it made me think - before you assume that you will have easily accessible bathing facilities in Europe, call ahead. I would guess that while this tub is unusual, it is not one of a kind.

Back in Dresden - the 4 flights of steps are looking easier than the tub!

Tuesday, May 12, 2009

Ouch! Those fancy sidewalks hurt!

Germany, at least Dresden and Berlin, has an obsession with making their sidewalks interesting to the eye and to the feet. In the last few days, I've walked on cobblestone, brick, flat slabs, small rocks embedded in concrete, and on and on.

I've learned something.

American sidewalks have made me lazy - I don't pick up my feet very much... I shuffle, I think. The reason I know this now is because the first few days in Dresden I tripped constantly, twisting my ankle, jamming my knee.


High stepping time. I've gotten much better at lifting my feet higher when I walk. And looking down. And boy those German sidewalks are pretty.

Monday, May 11, 2009

Morning blues - jetlag and psoriatic arthritis

A quick note about time, and aches and pains...

For the last few days, I've found that while my brain is up and ready to go at 9am Germany time, (midnight back home) my body isn't. It's the strangest thing. My sister-in-law and I will be up, dressed, and eager for our next shopping or sightseeing adventure, and suddenly I'll feel like I'm walking through quicksand. It's as if my body is asleep while my brain is awake. All my bad joints hurt, I'm terrifically fatigued, and I need breaks more often than I'd like to admit.

By about 2PM, I'm just fine and ready to go anywhere, and feel like I could walk for hours. (I can't, but I like to pretend).

I do wonder if my body just isn't adjusting to the jetlag as well as my brain is! I've traveled overseas several times before (including a year and a half ago, before my disease really kicked in, but I was already old - 40-something) and didn't have this odd problem.

I hope it wears off soon. I'm off to Berlin tomorrow and want to do lots of walking. Fortunately, my morning will be spent on the train.

Saturday, May 9, 2009

Evening in Dresden

Did I mention that my brother lives at the top of 4 flights of stairs? We just walked to a lovely dinner, and then walked back (about 6 blocks), and then had to tackle the stairs. Oy gevault.

Fortunately, I'm not in too much pain, because I did time my anti-inflammatory correctly. I have to take it every 12 hours, and I usually take it with breakfast and dinner. But, Germany is 9 hours ahead of Oregon. So, I could either take extra diclofenac - basically, take my usual Oregon evening dose, and then my morning Germany dose - but those would only be 3 hours apart. I opted for less, rather than more. At about 6:00 AM in Germany, which was 9pm in Oregon, I took my usual evening pill, and counted it as both Friday night and Saturday morning.

This may just be too complicated to follow, but the lesson here is... don't just take for granted that it will be easy to think about medication and time changes. If I miss an anti-inflammatory, I hurt terribly, and I really don't want to be hurting with those stairs and my toddler niece. Think about your medication when you travel, and do the math. I brought one of those little pill cases with a compartment for each pill, and I'm glad I did... I can easily tell if I miss a dose, which is important when you have jetlag!

Tchuss! More tomorrow!

in the airport in frankfurt

Ok, this will be a badlly typed entry because in germany the kezboard is different!

Just a few thoughts on international travel with psoriatic arthritis.,,, and sometimes even this doesn´t help!

my seat reservation got changed, and I was stuck in an aisle, with the tv box under the seat. aisles arenät ssupposed to be bad, right? but my bad knee couldnät stretch out! so, i recommend that when one tries to fly long distances, think hard about your needs. my right knee needs to stretch. fortunately, i was able to switch (thanks to a man who panicked and needed to get off the plane - we had to go back to the gate while he freaked out) I got a window on the right. my leg could stretch againszt the wall of the plane.

more later! off to buy haribo - autoimmune diet is out th e window

Thursday, May 7, 2009

Have psoriatic arthritis, will travel

My Remicade live-blog was so successful, I think I'm going to make a career out of internet stunts. What will I do next? Post videos of my cortisone shots? Make a huge public sculpture out of pill bottles and ice packs in Washington D.C. and write about my subsequent dinner with the Obamas? Crash the International Conference on Psoriasis and Psoriatic Arthritis in Stockholm with my laptop?

Well, actually, that last one is close. In all seriousness, I'm leaving for Germany tomorrow. I don't know what's going on with my knee, but the pain has been fierce, and I'm a little stressed about travelling with it feeling like this. BUT, I'm not going to let it ruin my trip. I have sights to see and a 17 month old niece to play with. I'm not gonna let the disease stop me.

Starting tomorrow I'll be blogging about traveling with active psoriatic arthritis (whenever I can find an internet connection and a free moment). I'll catch you all up on what's going smoothly, what's unexpected, and what's a pain. Things like: how to keep my joints from freaking out on that 12 hour plane trip, how to keep track of my pills on a different time zone, how to make the most out of a city when I can't walk too far, and how to ask "is that gluten-free" in Deutch!

Join me, and enjoy!

Auf Wiedersehen

Wednesday, May 6, 2009

Rip Van Winkle - what I missed while I was sleeping

I'm waking up from my Remicade daze and greeting the world again, and I'm realizing how much I've missed in the last few days. I don't have time to pontificate on all of these bits and bobs, but I wanted to share some news and some links, in case any of you find them as fascinating as I do. Here they are:
  • A study at Stanford just found that narcolepsy is an autoimmune disease. Check it out
  • Another study just got us one step closer to proving that Epstein-Barr virus can cause multiple sclerosis, another autoimmune disease. Check it out. (I have written about EBV in the past, here)
  • And finally - here's a study that shows that in the average age of breast development has fallen by one year in the last 15 years. So in the early 1990s, European girls were getting their breasts a year later than they are now. Researchers think this is due to environmental triggers. Check it out.
Why are these three articles interesting? To sum up: more and more diseases are now thought to be autoimmune (like psoriatic arthritis), we can now prove that environmental triggers (like EBV) might cause autoimmune diseases, and we can now start guessing that environmental toxins are increasingly affecting our bodies, and our children's bodies.

Ok, have fun with that bedtime reading.

I'm gonna go have a glass of organic milk.

The morning after

I have a Remicade hangover. I slept terribly - woke up every 45 minutes or so after 3AM, thinking I was WIDE AWAKE and ready for the day, and then would fall right back asleep. Can't get the tea into myself quickly enough this morning... I'm tired, just a bit groggy.

And I still feel sloshy. Can anyone identify with that? I just feel a little more... liquid.

I'll write something intelligent later. More tea.

Tuesday, May 5, 2009

Waking up

Ok - we're now 7 hours post infusion. I started feeling better at about 5:30 - got up from in front of the TV, got a child from a friend's house, made dinner. I still feel sloshy, but not so sleepy.

I can do this every 6-8 weeks... but I do need to make sure that I don't drive home in traffic and that I have not much going on for the rest of they day...

Lets see what tomorrow brings, mousie.

Note to self - don't just buy the lattte, drink it too...

Ok. I'm home. Can't type Lattttttte, apparently. But home.

That was a fun little adventure. I feel sloshy, and sleepy. My eyes are half open. The couch is looking pretty comfy right now.

I'll post again before bed... I'm curious about how long this bleariness will last. It is just like the medical assistant warned me yesterday - like how I feel when I'm having a flare, without the pain. Just the fatigue.


All done, out of here!

106/58... my new blood pressure. "Nice and relaxed" Karen 1 says.

And I'm done! I'll put up another post in an hour or so after I'm home... just so y'all know what the after effects feel like...

Thanks for reading!

just got the "good beep"

"AIR IN LINE" is nothing to worry about here. It means I'm done! Whoohoo.

Well, sortof. I'm still sitting here, IV in, pillow on lap, but the machine is done!

I'll write one more post before I waltz (stumble) out of here and find a coffee...

on mouse juice and men

Ok, so why am I joking about meeses?

Here's a clip from about Remicade:
  • Remicade uses human and mouse proteins to create a chimeric monoclonal antibody.
  • Enbrel is derived by introducing human DNA into Chinese hamster ovary cells and creating a genetically engineered protein.
  • Humira uses fully human proteins and phage display technology to produce monoclonal antibodies.
In case you were wondering. I've not tried hamster yet, but I may get there.

250 ml!

20 minutes of this final push, and I'm done! The machine attached to my bag is buzzing buzzing buzzing. It is working hard. "get that mouse in there"


I would say that I'm sleepy, but obviously, I can blog, so not that sleepy. And super thirsty, which is strange given that I'm on saline.

I think I have about 20 minutes to go.

Very uneventful, other than the difficult needle, and the sleepiness. I may have to get a coffee to manage the drive home.

Medical assistants, not nurses.

Karen 1 and Karen 2 are not nurses... sorry for the error before. But they are experts...

But apparently, in Oregon, where we live, they can't do infusions unless a doctor is in the office too.


I can see why they give us napping chairs. I'm super tired...

The room is filling up - chatty relatives, a nice man sitting next to me reading. There are 5 of us getting treatment, including another first timer who is having back pain. They've been adding steroid to her saline bag, and watching her super closely. She seems ok now.

125 per hour

We're cranking now. but i'm typing with one hand to keep the machine from yelling

100 Ml per hour, and I'm feeling it

Ok, I'm definitely tired now. But blogging.

My spelling might get bad. be warned.

Conflict of interest

Ok, so the machine keeps beeping at me, it keeps getting mad.

Because my veins are so small, they had to put the needle in at the crook of my elbow. SO, now, when I bend my arm too much, it yells at me "downstream occlusion" and stops. They've moved it closer to me so I can run the machine myself. Kind ladies.

And they're heating up my gluten free quiche.

is it called "remicide?"

My brother just asked...

up to 80ml/hour...

15 minutes of this now...

Brad,Jennifer and Posh Spice...

A.K.A. ... what people who don't know each other, strapped to chairs, find to talk about.

These old ladies are pretty hip...

Next time I'm bringing a People Magazine...

from 40ml/hr to 60ml/hr

Ok, the machine just switched...upped the dose...

"get that mouse in there"

Comment from this woman across the way.

(remicade is made out of mouse protein, or some such)

Ok, just a few random items

They are playing the most annoying musak - fortunately very very quietly.

There is candy in the corner - with this metallic taste, one of those lollipops is looking really great right now.

MMM, strawberry.

There are very tempting junk fiction novels piled up in the corner - Jude Deveraux, here I come.


The oddest thing, too - when the saline went in I immediately tasted metal in my mouth.

Blood pressure time

116/72 - "very nice" Karen 2 says.


Ok, all three times I've been in this infusion room, I'm the youngest one here. By about 20 years.

Drugs are in... feeling fine.

Ok, I'm officially drugged.

First off, I just found out that both nurses in here are Karens. Plus, my fab rheumatologist's assistant is called Caren. So... we've numbered them - actually, they've numbered themselves.

Karen 1 took out 30ccs of my saline, from the saline drip bag, and then put in the 30ccs of the Remicade into the drip. And now it's dripping. (if someone asked about my dose of Remicade, I'm getting 300mg, in "medicine talk" she she says).

Apparently the Remicade comes in tablet form, and because it's quite expensive they don't mix it until you're here, IV in arm, ready to roll.

The first nurse (Karen 2) had a hard time getting the IV in both my R and L arms - I have tiny veins, and she gave up after poking me a bunch. Karen 1 then took over - she got it in one jab, and in my left arm (I'm left handed). We like both the Karens, but Karen 1 gets the prize.

Once I was stuck, they mixed up the Remicade and got it going.

The drip is hooked up to a machine which measures the doses out in 8 different steps - slow at first (for about an hour) and then increasing 'til they're just blasting the stuff in me at the end.

So here we go.

Needle's in, waiting for the drugs

Ok, so I'm in a room, about 20x20, in a big comfy chair with my feet up. I think the flutters I'm feeling right now has to be nerves, because I've got no Remicade in me yet.

When you check in, they give you a form to fill out about whether or not you feel sick, you have a cold, cough, etc. No on all counts, for me, but the nurse just explained that they won't do the treatment if I'm sick, and I should call first if I feel bad.

There are 10 chairs in here...

OH< wait, here come the drugs. More in a minute.

I'm here

The WIFI is working.

Right arm about to be poked. Nice people.

Pre-Remicade jitters, seriously, now...

Ok, so I've had a rough few days, and as I mentioned yesterday, I haven't had a lot of time to do research on what it is actually like to get Remicade. So yesterday I turned to the Internet to find some answers, and completely freaked out.

Some people throw up, all during treatment.
Some people can't breathe.
Some people get terribly tired, and have to sleep for days.
One person I read about had to go to the E.R.

I didn't plan well. I'm home alone with my two kids this week - hubby is traveling again. What if any, or all of these things happen to me today? After all this reading, hyperventilation ensued, at about 4:30 yesterday afternoon.

So what did a brave girl like me do with all this terrifying information? I called fab rheumatologist's office immediately, and tried to talk them into cancelling my treatment.

They were very reassuring. They told me they have never had a huge problem in their office, that only a handful of their 400 patients have allergic reactions, and that at most I would just be sleepy, like I am when I'm having a flare. And that was unlikely.

But I should call someone, just in case, to make sure I have back up child care for the kids.

If it weren't for the fact that I'm going to Europe in 3 days (3 DAYS! WOW!) I would have canceled and waited til my hubby is home. But I want the treatment - my Humira is wearing off, and my knee is on FIRE every night.

So I'm going for it. I have two girlfriends on standby, and have an easy day tomorrow.

Stay posted. I have to go see Laser Lady in a few minutes (burn, baby, burn) and then I'm off to my infusion.

Pre-Remicade Jitters - what do I wear?

Ok, I kid you not, that was my big freak-out this morning. What do you wear to your first Remicade infusion? I know I want to be warm and comfortable, and they'll need easy access to my arms.

But I want to look cute, too. I might be 42, but I'm really 18 at heart.

I settled on Gap jeans, a white long sleeved shirt and a very comfy green sweater, with a blue scarf. Plus some gorgeous blue glass jewelry that sets off my eyes. Perfect.

And, of course, clean underwear. In case I pass out and have to go to the E.R. One always needs clean underwear in the E.R.

Monday, May 4, 2009

N=1 - Remicade (Infliximab) tomorrow

The last few weeks have been a bit bumpy - first my prednisone adventure, then a shot in the toe to fight the dactylitis. And then my grandmother died on Thursday, which drenched the little spark that keeps me writing with a vat of tears.

Suddenly it's Monday, and I'm starting Remicade tomorrow. I've been too caught up in everything else to think much about the comfy chairs, the free candy, and the two hour IV drip that Remicade infusions promise. But I guess I should get my head in the game.

I'm going on Remicade because my fab rheumatologist wants me to be doing better. We've decided that Humira is only taking me 75% of the way to "well". Our goal is 100%.

So what is Remicade? Here's a nice little blurb on Remicade and Psoriatic Arthritis from the Remicade website. Infliximab was developed at NYU School of Medicine, and is produced by Centocor, which is now owned by Johnson and Johnson. It is a TNF-Alpha blocker, like Humira. According to my doc, it has as good of a chance of working on my arthritis as Humira, but possibly will do better things for my skin. (Poor Laser Lady, we'll be putting her out of a job). Here's the blurb from Wikipedia on this drug.

So, here's the deal. Tomorrow, if the rheumatologist's office has their wifi up, I'm going to live-blog my Remicade infusion. Sure, it's not the State of the Union or the Blazers' game, but I think it will be fun. If you've been wondering what it's like to have Remicade, tune in at about noon PST. I'll write every 20 minutes or so, just to tell y'all what's happening in that room of big vinyl chairs. Does the needle hurt? Does it burn when it goes in? Did I get dizzy and pass out?

Way more fun than a Blazers' game.

If they don't have their wifi up, I'll blog it all in Word and transfer it over to Blogger when I get back home, so look for it by 5pm PST (children permitting).

Wish me luck. It can't be as bad as a death in the family, right?

Friday, May 1, 2009

Video on laser treatment, thoughts on words...

Here's a great little video from a local news station about excimer laser treatment... just in case you were interested in seeing what the treatment looks like. (BTW, I love that the ad they chose to show before the video is for a beach resort... in the video the patient complains that she was told to leave a beach because of her psoriasis!).

And, on that note... I'm getting really tired of how often the word "embarrassing" is used in conjunction with the word "psoriasis". True, it can be embarrassing, but is it THAT MUCH more embarrassing than other physically visible diseases out there? Do we say "the embarrassment of a broken arm?" or "the embarrassment of being a quadriplegic?". No! Why the lack of sensitivity for psoriasis?

Lets get rid of the word "heartbreak" too, while we're at it.

Anyway, just a quick morning thought. Laser lady had to cancel our appointment today - I'm having withdrawals... I was really enjoying working on my elbow tan.