I had my 3rd excimer laser treatment on Tuesday, and WOW, pain. I blistered and it hurt.
I also learned that Laser-lady hasn't been 100% honest - I think she was trying to shelter me. It turns out that when she's adjusting the laser to the right level for your skin, the goal is not to avoid blistering. The goal is to get you to a level of laser intensity so that you hurt for 24 to 36 hours afterwards. If you hurt for less than 24 hours, it's not intense enough. If you hurt for more than 36 hours, its too much. Unfortunately, to find this sweet spot you are pretty much trying to get to blister level, because that's how you know when to scale back!
After Tuesday's treatment, I hurt for more than 48 hours. I hurt 'til I walked into my appointment on Friday. I blistered, I scabbed, I bled. It was a freakshow on my elbows.
And Laser-lady was pleased!
(Sorry, Laser-lady, if you're reading this. You and your little laser gun rock. I know you're doing it for my own good).
But OUUUCCCCHHHHH!!!!!!!!!
Friday, April 17, 2009
Make 'em laugh, doc!
We all know psoriatic arthritis is no laughing matter, but it appears that if we can find the funny side of our disease, we'll do better.
The Bio-Medicine website has a great article today about a research study showing that laughter can affect your disease course. Researchers took a group of diabetics, put them all on the same medication, but made only half of the diabetics watch a humorous video (of their choice) for a half an hour each day. The other half were not prescribed humor.
The folks who watched the funny videos:
The Bio-Medicine website has a great article today about a research study showing that laughter can affect your disease course. Researchers took a group of diabetics, put them all on the same medication, but made only half of the diabetics watch a humorous video (of their choice) for a half an hour each day. The other half were not prescribed humor.
The folks who watched the funny videos:
had lower epinephrine and norepinephrine levels by the second month, suggesting lower stress levels. They had increased HDL (good) cholesterol. The laughter group also had lower levels of TNF-α, IFN-γ, IL-6 and hs-CRP levels, indicating lower levels of inflammation.Crazy cool - laughter may reduce inflammation. Now I have to figure out what TV show makes me laugh for 30 minutes straight... finding one may be harder than giving myself that methotrexate shot!
Thursday, April 16, 2009
Genomic research update - we've got a ways to go.
The New England Journal of Medicine published several articles this week about the current state of research on the human genome. The articles were especially focused on whether greater understanding of the genome will lead to greater understanding of how humans develop certain diseases.
(If you, like me, need to run to the dictionary every time you hear the word "genome" to find out why it is different from "gene" or "chromosome" - here's a good link. In short - the genome is the complete set of genes in a particular organism).
Kraft and Hunter, in an article they title "Genetic Risk Prediction: Are we there yet?", state pessimistically:
Turns out we're more complicated than that - much more complicated. When one or a few genes are implicated in a disease, usually these genes can only predict the disease some of the time, for some people. There seems to be a lot more going on in our bodies besides genes in the development of a disease. AND, often, there are hundreds, instead of tens, of genes involved in a disease, which makes the development of a targeted drug really difficult.
It's very smart for these scientists to be taking a step back to think about whether or not the genomic research they are doing is going to pay off in the short run (or long run). If you look at the NEJM articles, you can see some differing of opinions - some folks sound more optimistic than others... some are wisely watching their wallets, and some are ambitiously still looking into the future.
I fear we have a long way to go.
(If you, like me, need to run to the dictionary every time you hear the word "genome" to find out why it is different from "gene" or "chromosome" - here's a good link. In short - the genome is the complete set of genes in a particular organism).
Kraft and Hunter, in an article they title "Genetic Risk Prediction: Are we there yet?", state pessimistically:
We are still too early in the cycle of discovery for most tests that are based on newly discovered associations to provide stable estimates of genetic risk for many diseases. Although the major findings are highly unlikely to be false positives, the identified variants do not contribute more than a small fraction of the inherited predisposition. ...Estimates are poor predictors of risk, both in absolute terms and in relation to risk estimators that will be available when more of the remaining locus associations are discovered.In other words, to answer their title question - no, we're not there yet. The New York Times has a great review today about the NEJM series of articles that explains this far better than I can. But, basically - researchers and drug companies thought that if we could examine the genomes of people with illnesses and compare them with genomes of people who are well, one or two genes in the genome would essentially "light up" as the key genes causing these diseases. Drugs could then be made that would alter these genetic sequences, thus curing those diseases.
Turns out we're more complicated than that - much more complicated. When one or a few genes are implicated in a disease, usually these genes can only predict the disease some of the time, for some people. There seems to be a lot more going on in our bodies besides genes in the development of a disease. AND, often, there are hundreds, instead of tens, of genes involved in a disease, which makes the development of a targeted drug really difficult.
It's very smart for these scientists to be taking a step back to think about whether or not the genomic research they are doing is going to pay off in the short run (or long run). If you look at the NEJM articles, you can see some differing of opinions - some folks sound more optimistic than others... some are wisely watching their wallets, and some are ambitiously still looking into the future.
I fear we have a long way to go.
Wednesday, April 15, 2009
Celiac Disease and Psoriatic Arthritis
I was trolling around PubMed today and came across this topic... frankly, I'm surprised at myself for not looking at it before, considering my history.
A study was published in the Journal Rheumatology in 2002 linking psoriatic arthritis to celiac disease. The researchers found that there was a higher rate of celiac disease in their PsA patients. They state:
What this study is saying is that people with psoriatic arthritis are more likely to have celiac disease, and that patients with more acute inflammation in their psoriatic arthritis could possible also have worse celiac disease.
I have had celiac disease and have been on a gluten-free diet for 16 years. I continually struggle with the autoimmune diet (no dairy, alcohol, sugar, etc - boring!) but the gluten-free part of the autoimmune diet has been easy. Gluten makes me very, very ill, and I'm never tempted to cheat. Its not worth it. When we're better friends I'll describe what happens to my gut when I eat wheat. But not yet. I don't know you well enough.
The researchers state, at the end of their article:
Of course, the plot thickens. Here in the U.S.A, another study was conducted which looked at the prevalence of IgA antibodies to gliadin (in other words, celiac disease) in folks with psoriasis and psoriatic arthritis. Their results found no increase in these antibodies in psoriasis and psoriatic arthritis patients. They state:
Hm. I meant for this to be a short blog post. But isn't this stuff fascinating? And here's another piece in my puzzle:
I have no idea if a gluten-free diet would work on my PsA, because guess what... the year I developed celiac disease was the year my knees first showed signs of arthritis. Autoimmune diseases can be triggered by something in the environment, and in 2003 I had just come back from Tonga with a bad case of giardia, a parasite. We think it triggered the celiac disease, and I know now what I didn't realize then - I was developing two diseases back in 2003 instead of one. At the time I had some physical therapy, but ended up ignoring my knees in order to focus on my gut. After a while, the knee pain was pretty manageable.
So here's my question: Did the giardia trigger two diseases, and did the new gluten free diet slow the disease process in my knees?
A final note: I've not had a single bout of ... um... unmentionable gastrointestinal troubles ... since I went on Humira for my arthritis. Go figure.
A study was published in the Journal Rheumatology in 2002 linking psoriatic arthritis to celiac disease. The researchers found that there was a higher rate of celiac disease in their PsA patients. They state:
An increased prevalence of coeliac disease in patients with PsoA has not been reported previously. Among our patients, 4.4% had coeliac disease (ascertained by the presence of villous atrophy) compared with 0.4% in a large Swedish adult population of blood donors.Celiac Disease (or coeliac disease, if you live in Europe), is an autoimmune disease in which the body confuses gluten (a protein found in wheat, barley and rye, as well as some other grains) with toxins. If a "celiac" ingests gluten, the body produces antibodies to break down the intestinal wall, destroying the villi which are used to digest food, in a flawed effort to save itself from toxins. When you lose those villi, you get super sick - anemic, weak, skinny. The only known treatment is complete adherence to a gluten free diet.
also:
Patients with PsoA have an increased prevalence of raised serum IgA AGA and of coeliac disease. Patients with raised IgA AGA seem to have more pronounced inflammation than those with a low IgA AGA concentration.
What this study is saying is that people with psoriatic arthritis are more likely to have celiac disease, and that patients with more acute inflammation in their psoriatic arthritis could possible also have worse celiac disease.
I have had celiac disease and have been on a gluten-free diet for 16 years. I continually struggle with the autoimmune diet (no dairy, alcohol, sugar, etc - boring!) but the gluten-free part of the autoimmune diet has been easy. Gluten makes me very, very ill, and I'm never tempted to cheat. Its not worth it. When we're better friends I'll describe what happens to my gut when I eat wheat. But not yet. I don't know you well enough.
The researchers state, at the end of their article:
Studies of the gastrointestinal mucosa in PsoA patients are therefore needed. Controlled studies of the effects of a gluten-free diet on the severity of PsoA are also required.In short, more psoriatic arthritics should go on gluten-free diets to see if they get better. In a research setting, with control subjects eating gluten, etc. etc.
Of course, the plot thickens. Here in the U.S.A, another study was conducted which looked at the prevalence of IgA antibodies to gliadin (in other words, celiac disease) in folks with psoriasis and psoriatic arthritis. Their results found no increase in these antibodies in psoriasis and psoriatic arthritis patients. They state:
We found no support for the results of prior studies showing that elevated AGAs occur with increased frequency in patients with psoriasis.I'm not convinced. Look at this abstract if you want to have your mind blown. It lists many, many skin manifestations in auto-immune diseases - from Grave's to Crohn's to celiac disease. It is apparent our skin, as one of the organs of our bodies, is greatly affected by our immune system, especially when it is in havoc. I'm continually astounded by the links between all of these autoimmune diseases, and by how so much of this science is still in its infancy. And it appears that our skin disease, and our joint disease, may be related to a gut disease.
Hm. I meant for this to be a short blog post. But isn't this stuff fascinating? And here's another piece in my puzzle:
I have no idea if a gluten-free diet would work on my PsA, because guess what... the year I developed celiac disease was the year my knees first showed signs of arthritis. Autoimmune diseases can be triggered by something in the environment, and in 2003 I had just come back from Tonga with a bad case of giardia, a parasite. We think it triggered the celiac disease, and I know now what I didn't realize then - I was developing two diseases back in 2003 instead of one. At the time I had some physical therapy, but ended up ignoring my knees in order to focus on my gut. After a while, the knee pain was pretty manageable.
So here's my question: Did the giardia trigger two diseases, and did the new gluten free diet slow the disease process in my knees?
A final note: I've not had a single bout of ... um... unmentionable gastrointestinal troubles ... since I went on Humira for my arthritis. Go figure.
Monday, April 13, 2009
Traffic causes arthritis?
Here's a quick find - the New York Times today, described a research study that connects living near a highway with the development of rheumatoid arthritis in women.
Here's a good quote:
Here's a good quote:
After controlling for age, cigarette smoking, oral contraceptive use and many other variables, researchers found that the women who lived within 55 yards of a large road had a 31 percent increased risk for rheumatoid arthritis compared with those living 220 or more yards away.Don't anyone go calling their real estate agent (this is a bad time to sell, anyway). But it's another link in the chain connecting environmental toxins with autoimmune diseases.
Can I have some mustard with that sausage?
Psoriatic arthritis will never be a pretty disease. But could we at least give prettier names to the the ugly things that happen to us?
It appears I am having a new symptom - dactylitis - a.k.a "sausage digit". Dactylitis is the painful swelling of a finger or a toe, and this symptom is somewhat common in those of us with psoriatic arthritis. There is not much known about dactylitis, although in the last 25 years more has been learned - here's a nice review article. Sadly for me, dactylitis seems to be a sign of potentially more severe disease - it is linked to a greater degree of joint damage.
Here's what it looks like - my big toe on my right foot is extremely painful, getting swollen (especially at the end of the day), slightly discolored, and has a limited range of motion. The pain has been getting progressively worse over the last few months, and this week it's just awful. My rheumatologist and I are going to talk about treatment options on Friday.
But back to my earlier comment - why do we have to call it "sausage digit?" Come on now. It's hard enough getting a puffed up painful joint, but do we have to be taunted with these terrible words?
My husband and I are trying to come up with some new labels which put a positive spin on puffiness. Here are some selections:
phat phalanges (if you wanna be hip)
yorkshire pudding feet (yum)
balloon animals
pillows of pain
slipper busters (or mitten busters, in the hands)
Incredible Hulk hands
Please submit your ideas below. As you can see, I need some help here!
Oh, and by the way, the internet isn't helping us. Here's a definition of dactylitis from Answers.com:
It appears I am having a new symptom - dactylitis - a.k.a "sausage digit". Dactylitis is the painful swelling of a finger or a toe, and this symptom is somewhat common in those of us with psoriatic arthritis. There is not much known about dactylitis, although in the last 25 years more has been learned - here's a nice review article. Sadly for me, dactylitis seems to be a sign of potentially more severe disease - it is linked to a greater degree of joint damage.
Here's what it looks like - my big toe on my right foot is extremely painful, getting swollen (especially at the end of the day), slightly discolored, and has a limited range of motion. The pain has been getting progressively worse over the last few months, and this week it's just awful. My rheumatologist and I are going to talk about treatment options on Friday.
But back to my earlier comment - why do we have to call it "sausage digit?" Come on now. It's hard enough getting a puffed up painful joint, but do we have to be taunted with these terrible words?
My husband and I are trying to come up with some new labels which put a positive spin on puffiness. Here are some selections:
phat phalanges (if you wanna be hip)
yorkshire pudding feet (yum)
balloon animals
pillows of pain
slipper busters (or mitten busters, in the hands)
Incredible Hulk hands
Please submit your ideas below. As you can see, I need some help here!
Oh, and by the way, the internet isn't helping us. Here's a definition of dactylitis from Answers.com:
n.[NL., fr. Gr. da`ktylos finger + -itis.]Um. Gross?
(Med.) An inflammatory affection of the fingers. Gross.
Friday, April 10, 2009
N=1 - I bought a bike
I bought a bike. And I'm riding it.
Those are revolutionary words for me.
I have always been unathletic, physically weak, and combative when told to exercise. "I can't, I have sciatica". "I can't, I have bad knees". "I can't, I'm working on my dissertation".
Excuses to avoid physical activity fall easily from my tongue, and as long as I stay slender, I use those same excuses on the critics inside my head. I live in a cerebral fantasy world in which if I'm smart, productive and thin, I don't need to exercise my body. I'll admit it, I'm lazy.
The psoriatic arthritis diagnosis reconfirmed my beliefs about my history of inactivity. "Hey," I told myself, "I'm different from other people, I have this disease, and always have. Of course I'm always weak, and tired, and fragile. Heck, I injured myself while sailing! Who develops chronic back problems from SAILING, for Pete's sake?"
Must have been early PsA, I've been telling myself. These kind of experiences have taught me to believe that I'm much better off behind a desk where I won't embarrass or hurt myself.
Until... a few weeks ago, someone on the psoriatic arthritis message boards who sounds like he is in a lot of pain wrote that he still goes for his run every day. This simple post blew my mind. Many days just getting down the stairs to the kitchen is intimidating. What, is he nuts? His passing comment about his run became a direct challenge to my laziness.
A day later, an article written by a doctor declared that gentle exercise helps arthritis. "Swim, or walk, or bike" it said. Another challenge to my long held beliefs.
By the way, today is the last day of my blogging challenge. I never thought I could write something every day - that I could keep this up, this crazy blog, and find the courage to put my writing out there so publicly. But I have.
And I'm sad. Sad that the my blog campaign is over. I love a challenge. I love a good dare.
So I bought a bike. It's a green Trek townie - a new friend called it elegant, and a long-time friend told me I look like Pee-Wee Herman on it. It makes me sit super upright, to not hurt my back, and I bought a pink helmet with stars to go with it, just for kicks.
PeeWee, eat your heart out.
I ride, and ride, and ride. It makes me happy. I rode 4 miles one day last week without pain. Biking with arthritis makes my body feel the way it did swimming while pregnant. Weightless, strong, and normal.
My new challenge is to ride my bike 3 times a week. For two months. At least 2 miles. And I won't ask any of you to sponsor me ... I promise.
Ready... set... GO!
Those are revolutionary words for me.
I have always been unathletic, physically weak, and combative when told to exercise. "I can't, I have sciatica". "I can't, I have bad knees". "I can't, I'm working on my dissertation".
Excuses to avoid physical activity fall easily from my tongue, and as long as I stay slender, I use those same excuses on the critics inside my head. I live in a cerebral fantasy world in which if I'm smart, productive and thin, I don't need to exercise my body. I'll admit it, I'm lazy.
The psoriatic arthritis diagnosis reconfirmed my beliefs about my history of inactivity. "Hey," I told myself, "I'm different from other people, I have this disease, and always have. Of course I'm always weak, and tired, and fragile. Heck, I injured myself while sailing! Who develops chronic back problems from SAILING, for Pete's sake?"
Must have been early PsA, I've been telling myself. These kind of experiences have taught me to believe that I'm much better off behind a desk where I won't embarrass or hurt myself.
Until... a few weeks ago, someone on the psoriatic arthritis message boards who sounds like he is in a lot of pain wrote that he still goes for his run every day. This simple post blew my mind. Many days just getting down the stairs to the kitchen is intimidating. What, is he nuts? His passing comment about his run became a direct challenge to my laziness.
A day later, an article written by a doctor declared that gentle exercise helps arthritis. "Swim, or walk, or bike" it said. Another challenge to my long held beliefs.
By the way, today is the last day of my blogging challenge. I never thought I could write something every day - that I could keep this up, this crazy blog, and find the courage to put my writing out there so publicly. But I have.
And I'm sad. Sad that the my blog campaign is over. I love a challenge. I love a good dare.
So I bought a bike. It's a green Trek townie - a new friend called it elegant, and a long-time friend told me I look like Pee-Wee Herman on it. It makes me sit super upright, to not hurt my back, and I bought a pink helmet with stars to go with it, just for kicks.
PeeWee, eat your heart out.
I ride, and ride, and ride. It makes me happy. I rode 4 miles one day last week without pain. Biking with arthritis makes my body feel the way it did swimming while pregnant. Weightless, strong, and normal.
My new challenge is to ride my bike 3 times a week. For two months. At least 2 miles. And I won't ask any of you to sponsor me ... I promise.
Ready... set... GO!
Thursday, April 9, 2009
And it burns, burns, burns... the ring of fire
I had my first laser treatment on Tuesday, and I wanted to share the experience here in the blog, in case anyone is considering trying it.
Excimer laser treatment for psoriasis is used primarily for people with stubborn but smaller and contained plaque areas. The laser's highly concentrated UVB light treatments have been proven more effective than other treatments for many folks, and can put psoriasis into remission for several months. About.com has a nice description of the treatment here.
I have plaque psoriasis on my scalp and on my elbows, and the Humira and topical ointments have not reduced these patches, so my dermatologist and I decided to give the laser a go.
First - getting on the calendar. The scheduler went ahead and scheduled all 10 of my appointments up front. Geez... scheduling those appointments took longer than the first laser treatment. I'm still not sure what was so challenging, but it took that patient woman about 20 minutes, 3 phone calls and a supervisor coming in to help to get me on the books. I'm going to be seen at 11am every Tuesday and Friday through the first week of May.
On Tuesday, I showed up about 5 minutes early, and was seen right on time by the physician assistant, who will be my laser-lady for every visit. We had a brief conversation about what to expect from the treatment and where I wanted to be lasered, and then she had me sign a consent form. This took about 7 minutes.
Laser-lady then asked me about how easily I sunburn, and adjusted the laser accordingly. Apparently, treatment is started at the lowest level, and then is gradually increased over time until it becomes too intolerable. As I mentioned in an earlier post, the hope is to avoid blistering (even though it puts you in remission sooner).
The laser itself is at the end of a wand, about the same diameter as a half dollar. We both put on safety glasses, and the treatment began. Laser-lady placed the wand over each area we wanted to treat, and pressed a button. The wand glowed blue for about 1 second, and then beeped and changed color to red when the laser shut off. Because the patch on my right elbow is bigger than the wand, she moved it several times, each time pushing the button to activate it.
Then we moved on to my scalp, and behind my ears.
The sensation is warmth, at least with these first treatments. Towards the end of each second, just before the beep, you can feel a bit of heat. But not much. I expect that as we increase each treatment, the heat will increase and it will get more and more unpleasant. But this was not unpleasant at all.
The entire treatment took about 5 minutes. Really. Took me 4 times as long just to drive to the office.
For the first day after the treatment, my scalp felt a little warm, but not very. My elbow is bright red now, not covered in whitish plaques, and feels a little raw. But other than that, I feel nothing.
My next treatment is tomorrow. So far, so good.
Excimer laser treatment for psoriasis is used primarily for people with stubborn but smaller and contained plaque areas. The laser's highly concentrated UVB light treatments have been proven more effective than other treatments for many folks, and can put psoriasis into remission for several months. About.com has a nice description of the treatment here.
I have plaque psoriasis on my scalp and on my elbows, and the Humira and topical ointments have not reduced these patches, so my dermatologist and I decided to give the laser a go.
First - getting on the calendar. The scheduler went ahead and scheduled all 10 of my appointments up front. Geez... scheduling those appointments took longer than the first laser treatment. I'm still not sure what was so challenging, but it took that patient woman about 20 minutes, 3 phone calls and a supervisor coming in to help to get me on the books. I'm going to be seen at 11am every Tuesday and Friday through the first week of May.
On Tuesday, I showed up about 5 minutes early, and was seen right on time by the physician assistant, who will be my laser-lady for every visit. We had a brief conversation about what to expect from the treatment and where I wanted to be lasered, and then she had me sign a consent form. This took about 7 minutes.
Laser-lady then asked me about how easily I sunburn, and adjusted the laser accordingly. Apparently, treatment is started at the lowest level, and then is gradually increased over time until it becomes too intolerable. As I mentioned in an earlier post, the hope is to avoid blistering (even though it puts you in remission sooner).
The laser itself is at the end of a wand, about the same diameter as a half dollar. We both put on safety glasses, and the treatment began. Laser-lady placed the wand over each area we wanted to treat, and pressed a button. The wand glowed blue for about 1 second, and then beeped and changed color to red when the laser shut off. Because the patch on my right elbow is bigger than the wand, she moved it several times, each time pushing the button to activate it.
Then we moved on to my scalp, and behind my ears.
The sensation is warmth, at least with these first treatments. Towards the end of each second, just before the beep, you can feel a bit of heat. But not much. I expect that as we increase each treatment, the heat will increase and it will get more and more unpleasant. But this was not unpleasant at all.
The entire treatment took about 5 minutes. Really. Took me 4 times as long just to drive to the office.
For the first day after the treatment, my scalp felt a little warm, but not very. My elbow is bright red now, not covered in whitish plaques, and feels a little raw. But other than that, I feel nothing.
My next treatment is tomorrow. So far, so good.
Wednesday, April 8, 2009
Biotech bits take 2
Many of you by now have seen that Genentech is pulling the psoriasis drug Raptiva off the U.S. market. This follows the removal of the drug from the European market in Feb, when fears first emerged that the drug was causing a rare brain disorder, progressive multifocal leukoencephalopathy.
What took the U.S. so long?
If you're on this drug, please call your physician immediately to discuss your treatment.
What took the U.S. so long?
If you're on this drug, please call your physician immediately to discuss your treatment.
Biotech bits
Today, two articles caught my eye regarding biotechnology and the drugs produced from this science. I wish I could be more excited about these little bits of news, but its hard to decipher them, and even harder to guess what they may mean for us out here in PsA-land.
The first article concerned another "mab" drug (like andalimumab and infliximab) which is being tested for effectiveness on psoriatic arthritis, as well as psoriasis. Golimumab is produced by Centocor, and is in phase III clinical trials. It looks like it is mildly effective for psoriatic arthritis, and if I'm reading this article right, may be even more effective for psoriasis. But the results, while positive, aren't earth-shatteringly good:
What's great about Golimumab, however, is that it's another option for us. Many people with psoriatic arthritis find that Humira, or other biologics, stop working so well after a year or two. Just having one more drug to try is fabulous news.
The second interesting article was regarding a court case on patents. A Federal appeals court in Washington, D.C. ruled that an invention from Amgen, which was basically the sequence for a gene, could not be patented. It was developed using a method that was so obvious that the court thought that "any competent graduate student can take a known protein and come up with the nucleotide sequence that encodes it." (full disclosure: this is a quote from Science magazine, which I cut from a blog that quoted it).
In short: because the methods for locating this gene sequence were so obvious, Amgen couldn't claim ownership, I think. (Please correct me if you understand this better than I do).
In another news article on this story, an important question is asked - what affect does this have on future products, findings, etc from biotechs? If they use obvious methods to make discoveries or design drugs, can they not patent them? Does that mean they will be seeking only those discoveries they will patent? And does this have an effect on the cost of making and producing drugs?
I'm going to keep following this story, and will write more as I "get it" more. It's a brave new world out there. What will our lives be like in 20 years, and in 200?
The first article concerned another "mab" drug (like andalimumab and infliximab) which is being tested for effectiveness on psoriatic arthritis, as well as psoriasis. Golimumab is produced by Centocor, and is in phase III clinical trials. It looks like it is mildly effective for psoriatic arthritis, and if I'm reading this article right, may be even more effective for psoriasis. But the results, while positive, aren't earth-shatteringly good:
Dr. Kavanaugh and colleagues said the results were promising for golimumab, the first subcutaneous TNF-alpha inhibitor to show efficacy against certain psoriatic arthritis symptoms, such as nail disease, enthesitis, and dactylitis.It appears that some of us may have some good results with this drug, and some won't.
They also noted that patients continued to show improvement when they continued on treatment for an additional 10 weeks.
On the other hand, at week 24, fewer than 40% on either drug dose met the more stringent ACR50 standard for response (50% reduction in symptoms).
What's great about Golimumab, however, is that it's another option for us. Many people with psoriatic arthritis find that Humira, or other biologics, stop working so well after a year or two. Just having one more drug to try is fabulous news.
The second interesting article was regarding a court case on patents. A Federal appeals court in Washington, D.C. ruled that an invention from Amgen, which was basically the sequence for a gene, could not be patented. It was developed using a method that was so obvious that the court thought that "any competent graduate student can take a known protein and come up with the nucleotide sequence that encodes it." (full disclosure: this is a quote from Science magazine, which I cut from a blog that quoted it).
In short: because the methods for locating this gene sequence were so obvious, Amgen couldn't claim ownership, I think. (Please correct me if you understand this better than I do).
In another news article on this story, an important question is asked - what affect does this have on future products, findings, etc from biotechs? If they use obvious methods to make discoveries or design drugs, can they not patent them? Does that mean they will be seeking only those discoveries they will patent? And does this have an effect on the cost of making and producing drugs?
I'm going to keep following this story, and will write more as I "get it" more. It's a brave new world out there. What will our lives be like in 20 years, and in 200?
Tuesday, April 7, 2009
Taking charge!
More Magazine had an article in this month's issue that did a good job of discussing something I really advocate for: being your own medical CIO (Chief Information Officer). Here's a link to the article online, and here's the tagline, which I think sums it up nicely:
The article also recommends a book I'm gonna go check out - Patient, Heal Thyself: How the New Medicine Puts the Patient in Charge.
I spent most of my dermatologist appointment yesterday grilling my doctor (and her resident) about psoriatic arthritis, psoriasis, rheumatoid arthritis and autoimmune diseases in general. She was great - she sat down and spent a lot of time just talking with me about what she thought the challenges are in diagnosing and treating these diseases. I was prepared and came with questions, and she took the time to answer them.
Advocate for yourselves, my friends! Attitude makes a huge difference in healing.
Physicians, pharmacists and hospitals will come and go over your next 20 years, so only you can be trusted to act as your body's CEO.Their advice runs from 1) pick a good medical partner and 2) learn to speak up, to 5) do web research - but carefully.
The article also recommends a book I'm gonna go check out - Patient, Heal Thyself: How the New Medicine Puts the Patient in Charge.
I spent most of my dermatologist appointment yesterday grilling my doctor (and her resident) about psoriatic arthritis, psoriasis, rheumatoid arthritis and autoimmune diseases in general. She was great - she sat down and spent a lot of time just talking with me about what she thought the challenges are in diagnosing and treating these diseases. I was prepared and came with questions, and she took the time to answer them.
Advocate for yourselves, my friends! Attitude makes a huge difference in healing.
Monday, April 6, 2009
Chicken or the egg?
Those of you who get Google alerts for the word psoriasis will have noticed this headline popping up all over this morning - "Psoriasis may reflect systemic inflammation, heart disease".
The article this headline links to is on the American Medical News website, and refers to a key theme from the American Academy of Dermatology meeting in San Francisco in March. At this annual meeting, several forums focused on whether psoriasis should be considered a systemic disease (a disease which affects multiple parts of the body, instead of just the skin), and especially considered cardiac risks in people with psoriasis. The article states:
This article also did a great job explaining the complexities of of studying psoriasis in humans, especially when you're trying to include how psychology affects these studies. Sometimes we smoke, sometimes we get overweight, sometimes we're non-compliant. Do we act this way because of our disease, or do these behaviors cause the disease?
Watch out, though... here comes my soapbox again. I found NO mention of the ugly stepsister in this article - not one reference to psoriatic arthritis was included. Time for my megaphone: Hello!!! What about the inflammatory disease closely related to psoriasis? We have quality of life issues. We experience depression and obesity due to pain and immobility. Don't forget us!
You know they talked about psoriatic arthritis at the March meeting. But the press didn't pick it up. I find that a bit frustrating.
Ok, soap box is going back in the closet. Check out the article, though. I liked it anyway.
The article this headline links to is on the American Medical News website, and refers to a key theme from the American Academy of Dermatology meeting in San Francisco in March. At this annual meeting, several forums focused on whether psoriasis should be considered a systemic disease (a disease which affects multiple parts of the body, instead of just the skin), and especially considered cardiac risks in people with psoriasis. The article states:
This meeting is the latest to highlight a burgeoning body of scientific literature, data and expert opinion that psoriasis is related to more than a lower quality of life. Like other inflammatory conditions, it is linked to a shorter lifespan and a range of significant health problems. The theory is that inflammation on the skin may be a reflection or cause of additional inflammation throughout the body.Look at that last sentence of the paragraph I quote above, and note the words "reflection or cause". Those are the key words, right there, and suggest some important questions: Does the skin inflammation cause other portions of the body (like the heart) to experience inflammation? Or is it the reverse - is skin psoriasis the result of other inflammation (like in the heart)? Or, is there a third factor at play that causes both skin and heart inflammation?
This article also did a great job explaining the complexities of of studying psoriasis in humans, especially when you're trying to include how psychology affects these studies. Sometimes we smoke, sometimes we get overweight, sometimes we're non-compliant. Do we act this way because of our disease, or do these behaviors cause the disease?
Watch out, though... here comes my soapbox again. I found NO mention of the ugly stepsister in this article - not one reference to psoriatic arthritis was included. Time for my megaphone: Hello!!! What about the inflammatory disease closely related to psoriasis? We have quality of life issues. We experience depression and obesity due to pain and immobility. Don't forget us!
You know they talked about psoriatic arthritis at the March meeting. But the press didn't pick it up. I find that a bit frustrating.
Ok, soap box is going back in the closet. Check out the article, though. I liked it anyway.
Friday, April 3, 2009
Are autoimmune diseases connected? I think yes!
A fellow Psoriatic Arthritis patient asked me to explain whether (and why) if someone has one autoimmune disease, they are more likely to get a second one. For example, in my case, is there some reason other than chance that I have both Psoriatic Arthritis and Celiac Disease?
To tell the truth... if I could answer that question I could win the Nobel prize and run a whole lot of people out of work. The immune system is incredibly complex, and a layperson like me can only skim the surface of understanding it.
Here's what I do know, however, after doing some sleuthing.
Yes, autoimmune diseases come in multi-packs, like underwear from Target. If you have one, you're likely to get two or three. This is called co-morbidity, btw. Just last month, an article in the American Journal of Epidemiology discussed some researchers' attempts to demonstrate autoimmune co-morbidity. The authors used public records to see how often rheumatoid arthritis, multiple sclerosis, autoimmune thyroiditis and insulin-dependent diabetes mellitus were present in the same individual. And they found that there was a high co-occurrence between rheumatoid arthritis, insulin-dependent diabetes mellitus and autoimmune thyroiditis. BUT... they found that there was an inverse relationship between RA and MS - which means that if you had one, you were LESS likely to have the other! Go figure. This reverse relationship does speak to a relationship... but what kind of relationship?
Dr. Noel Rose wrote an essay called The Common Thread discussing the etiology (the cause) of autoimmune diseases and the need for more research on the links between them. You can find the paper on the American Autoimmune Related Diseases Association website. Dr. Rose states:
Here's one data point that suggests a connection: many different autoimmune diseases can be treated by the same medication - and I'm not just talking about diseases that look similar, like psoriatic arthritis and rheumatoid arthritis. For example, my husband and I could get Abbott labs to give us a bulk discount - Humira treats PsA and Crohn's Disease. Humira is a TNF-alpha blocker - and both of our diseases can be linked to an excess of TNF-alpha. On the other hand, so far, Humira doesn't seem to treat every auto-immune disease.
In their book "The Autoimmune Connection" Rita Baron-Faust, Jill P. Buyon, M.D. hypothesize about some of the reasons autoimmune diseases may co-occur, or may perhaps be one disease with multiple symptoms. They say:
So, ok, what do we know about autoimmune co-morbidity? What do we think? Here's what I've learned:
It also speaks to something I've discussed before in my blog - the fact that humans' compulsions to put things in boxes - to categorize - may limit how we understand disease. Maybe autoimmune diseases are all just one disease... maybe they aren't, but they just share a lot of qualities or root causes. Do the diagnostics get in the way of knowledge? I think yes, sometimes. Perhaps a more holistic approach to research, diagnosis, and treatment would help use understand these symptoms (not diseases) better.
It also means I have a lot more to learn before I ever attempt to write a logical post about this topic again. This is complicated stuff.
To tell the truth... if I could answer that question I could win the Nobel prize and run a whole lot of people out of work. The immune system is incredibly complex, and a layperson like me can only skim the surface of understanding it.
Here's what I do know, however, after doing some sleuthing.
Yes, autoimmune diseases come in multi-packs, like underwear from Target. If you have one, you're likely to get two or three. This is called co-morbidity, btw. Just last month, an article in the American Journal of Epidemiology discussed some researchers' attempts to demonstrate autoimmune co-morbidity. The authors used public records to see how often rheumatoid arthritis, multiple sclerosis, autoimmune thyroiditis and insulin-dependent diabetes mellitus were present in the same individual. And they found that there was a high co-occurrence between rheumatoid arthritis, insulin-dependent diabetes mellitus and autoimmune thyroiditis. BUT... they found that there was an inverse relationship between RA and MS - which means that if you had one, you were LESS likely to have the other! Go figure. This reverse relationship does speak to a relationship... but what kind of relationship?
Dr. Noel Rose wrote an essay called The Common Thread discussing the etiology (the cause) of autoimmune diseases and the need for more research on the links between them. You can find the paper on the American Autoimmune Related Diseases Association website. Dr. Rose states:
Autoimmunity is an etiology: it is a cause of disease. Anatomically, autoimmune disease is very diverse; and that's why we see specialists in so many areas of medicine studying autoimmunity. They may be rheumatologists who are interested in joints; they may be dermatologists who are interested in skin; they may be cardiologists who are interested in the heart; they may be gastroenterologists who are interested in the gastrointestinal tract. But the common etiology for all of these disease--for Crohn's disease of the gut; for lupus of the skin; for rheumatoid arthritis of the joint--the common etiology that brings together all of these diseases is autoimmunity.Dr. Rose doesn't necessarily say that one disease can cause another, but that's not what we're talking about. We're talking about whether they occur at the same time, and whether autoimmune diseases are all just one disorder with multiple symptoms. It does make sense that if you are having a problem with your immune system in general, that the problem won't always limit itself to one organ or region, but can be systemic. But how do we prove that all of these autoimmune diseases are related, or perhaps one underlying disease?
Here's one data point that suggests a connection: many different autoimmune diseases can be treated by the same medication - and I'm not just talking about diseases that look similar, like psoriatic arthritis and rheumatoid arthritis. For example, my husband and I could get Abbott labs to give us a bulk discount - Humira treats PsA and Crohn's Disease. Humira is a TNF-alpha blocker - and both of our diseases can be linked to an excess of TNF-alpha. On the other hand, so far, Humira doesn't seem to treat every auto-immune disease.
In their book "The Autoimmune Connection" Rita Baron-Faust, Jill P. Buyon, M.D. hypothesize about some of the reasons autoimmune diseases may co-occur, or may perhaps be one disease with multiple symptoms. They say:
While autoimmune diseases may target different areas of the body, the genes that affect immune responses may be the same. For example, genes that govern cytokines may have a mutation that causes too many inflammatory molecules to be released. Defective genes common to autoimmune diseases may also affect the way T-cells are programmed to recognize antigens, the number of receptors they carry, the number of T-cells with a faulty memory, or how many defective T-cells are eliminated.Researchers are now trying to demonstrate, on a genetic level, that many autoimmune diseases are related. A group of researchers looked across 42 separate studies of 11 autoimmune diseases to see if they could find underlying genetic links. They found that several diseases shared some common genetic fingerprints (the HLA region of chromosome 6 lit up for many autoimmune diseases, as did many parts of chromosome 16). On the other hand, there were several genes that seemed to be involved with only one disease. This is from the Feb 2009 issue of the European Journal of Human Genetics - you can read the abstract here.
So, ok, what do we know about autoimmune co-morbidity? What do we think? Here's what I've learned:
- Many autoimmune diseases are likely to co-occur in the same person, but some aren't.
- Many researchers think that separate autoimmune diseases have a shared etiology, or cause, and may possibly be one disease. Some evidence supports this, but some doesn't.
- Many autoimmune diseases share similar genetic links, but not in all cases.
It also speaks to something I've discussed before in my blog - the fact that humans' compulsions to put things in boxes - to categorize - may limit how we understand disease. Maybe autoimmune diseases are all just one disease... maybe they aren't, but they just share a lot of qualities or root causes. Do the diagnostics get in the way of knowledge? I think yes, sometimes. Perhaps a more holistic approach to research, diagnosis, and treatment would help use understand these symptoms (not diseases) better.
It also means I have a lot more to learn before I ever attempt to write a logical post about this topic again. This is complicated stuff.
Thursday, April 2, 2009
Don't sell your horses yet
Here's a rebuttal to yesterday's bad mood - a great essay about sorting out who you want to be in relation to your disease. Mark Jamison says:
Some folks make a profession out of being sick, out of being less than they can be. Some folks spend a lifetime meaning to lose. Others soldier on nobly, making concessions where they must but making it through the day and life as best they can. Some folks fight, and some folks quit. Some get angry, some get mean. Some gain patience, and some lose it.It's all in whether, and how, we decide to fight.
Wednesday, April 1, 2009
N=1 - One of those days
I'm having one of those days.
Everyone has them. Chronically ill or not, you know what I mean. I'm not in the mood to write. I'm not in the mood to be witty, or persuasive, or even well-read. Part of my bleak outlook is disease related. I've been swallowed by a terrible flare all week, and this monster's digestive tract is something fierce. I just want to go to bed.
But my mood is also the result of the daily burdens of life. A good life, I might add. A life to be grateful for.
I have two beautiful children (both of whom, consecutively, ran fevers this week. Do you think they could have run those fevers on the same day, so I could get it all over and done with at once? No.)
I have a wonderful, supportive husband (who, in order to be supportive must travel for work. He got to miss the late night double fevers. He was in L.A., supporting us.)
And I live in a great town, in a big, beautiful house (but my house cleaner had surgery last week, which taught me a valuable lesson - I am not well enough to clean my big, beautiful house by myself. The scrubbing is what triggered my flare).
Flares pass. Bad days pass. Even grief passes. Most days I let optimism drive my chariot, like many of my fellow bloggers - Shauna James Ahern says "yes" to her life, Sara Gorman encourages optimism despite chronic challenges, MaxJerz writes about finding unconditional love for yourself while letting go of being superwoman. And even I, Dr. Data, found research supporting cheerfulness.
I love my blessed life. Sometimes I even love my illness, because it has forced me to slow down and appreciate my family more.
But what do I do on the bad days? Counting my blessings doesn't seem to be working today.
Must run... my precious sick boy calls.
Everyone has them. Chronically ill or not, you know what I mean. I'm not in the mood to write. I'm not in the mood to be witty, or persuasive, or even well-read. Part of my bleak outlook is disease related. I've been swallowed by a terrible flare all week, and this monster's digestive tract is something fierce. I just want to go to bed.
But my mood is also the result of the daily burdens of life. A good life, I might add. A life to be grateful for.
I have two beautiful children (both of whom, consecutively, ran fevers this week. Do you think they could have run those fevers on the same day, so I could get it all over and done with at once? No.)
I have a wonderful, supportive husband (who, in order to be supportive must travel for work. He got to miss the late night double fevers. He was in L.A., supporting us.)
And I live in a great town, in a big, beautiful house (but my house cleaner had surgery last week, which taught me a valuable lesson - I am not well enough to clean my big, beautiful house by myself. The scrubbing is what triggered my flare).
Flares pass. Bad days pass. Even grief passes. Most days I let optimism drive my chariot, like many of my fellow bloggers - Shauna James Ahern says "yes" to her life, Sara Gorman encourages optimism despite chronic challenges, MaxJerz writes about finding unconditional love for yourself while letting go of being superwoman. And even I, Dr. Data, found research supporting cheerfulness.
I love my blessed life. Sometimes I even love my illness, because it has forced me to slow down and appreciate my family more.
But what do I do on the bad days? Counting my blessings doesn't seem to be working today.
Must run... my precious sick boy calls.
Tuesday, March 31, 2009
Are psoriasis and psoriatic arthritis different diseases?
Maryanne Kazanis, a research fellow at Harvard and a med student, presented a paper in Japan last summer suggesting that psoriasis and psoriatic arthritis could possibly be different diseases. Check this out:
My two cents? I'm again struck with the similarities between psoriatic arthritis and rheumatoid arthritis, both in symptoms and the types of treatment that work. We really are just beginning to learn about these diseases, and anything is possible. What if psoriatic arthritis and rheumatoid arthritis are the same disease, with a few different symptoms? What if rheumatoid factor is just a symptom that some folks develop? And... what if psoriasis is a different disease that occurs a lot in people with PsA/RA type arthritis? What do you think?
I really gotta go get my M.D. This armchair speculation is making me woozy.
The heart of the article goes on to discuss Kazanis' research, which demonstrates that different diseases co-occur with psoriasis vs. psoriatic arthritis. The article also highlights some of the measurement issues in this study. It's worth a read...Support for the one-disease concept comes from the observation that arthritis occurs more frequently in patients with cutaneous psoriasis than in nonpsoriatic controls.
On the other hand, the fact that a drug such as cydosporine is effective for the skin manifestations of psoriasis but provides little benefit for psoriatic joint symptoms has caused many physicians to lean toward the view that psoriasis and psoriatic arthritis are two diseases, albeit possibly sharing some immunopathogenetic elements, Ms. Kazanis said.
My two cents? I'm again struck with the similarities between psoriatic arthritis and rheumatoid arthritis, both in symptoms and the types of treatment that work. We really are just beginning to learn about these diseases, and anything is possible. What if psoriatic arthritis and rheumatoid arthritis are the same disease, with a few different symptoms? What if rheumatoid factor is just a symptom that some folks develop? And... what if psoriasis is a different disease that occurs a lot in people with PsA/RA type arthritis? What do you think?
I really gotta go get my M.D. This armchair speculation is making me woozy.
Monday, March 30, 2009
Week 10 - what a wild ride
Humor me - I'm getting all weepy here...
It's almost week 10 of my blogging campaign, and I'm simultaneously exhausted and thrilled. As many of you know, 9 weeks ago I committed to writing a post on my blog every weekday, with three goals in mind. Those goals were:
So where does the blog go from here, at the end of these 10 weeks, when the fundraising stops?
I just can't stop! I'm addicted.
But I also realize I don't have something profound to write about at length every day.
I do have something to share every day though - an article or an idea, or a research finding about psoriatic arthritis or autoimmune disease.
So, I've decided, from now on, every week, I'll be writing a bunch of shorter posts. Sortof a "hey, if you have PsA, read this! It's cool!" bunch of blurbs - very Andrew Sullivan (my blogging style hero). I'm also going to broaden out and write a bit more on autoimmune disease in general. It's all related.
Also, every week, I will write at least one longer piece on something I'm thinking about or researching. For example, this week I'm learning a bunch about comorbidity and autoimmune disease - why do these diseases like to hang out together in a pack? Why if we have one are we more likely to have two?
And finally, every week, I'll post a N=1 post - how am I doing? (BTW - I'm flaring right now and the pain in my hands and elbows is excruciating - please forgive the grammatical errors and boring prose).
Thanks everyone for making this one of the most amazing experiences of my life. Keep reading, I'll keep writing. I hope to make this blog useful and usable for those of us who want to better understand the mysterious ways our bodies behave.
It's almost week 10 of my blogging campaign, and I'm simultaneously exhausted and thrilled. As many of you know, 9 weeks ago I committed to writing a post on my blog every weekday, with three goals in mind. Those goals were:
- to learn more about Psoriatic Arthritis, which I've come to call the "ugly stepsister" to Psoriasis and Rheumatoid Arthritis because it is so poorly understood. I wanted to learn more about this disease I have, and share what I'm learning.
- to write every day, in order to learn write and to find my voice.
- to raise money for a wonderful non-profit in San Francisco that helps homeless street youth. This blog is the product of a 10 week fundraising campaign.
So where does the blog go from here, at the end of these 10 weeks, when the fundraising stops?
I just can't stop! I'm addicted.
But I also realize I don't have something profound to write about at length every day.
I do have something to share every day though - an article or an idea, or a research finding about psoriatic arthritis or autoimmune disease.
So, I've decided, from now on, every week, I'll be writing a bunch of shorter posts. Sortof a "hey, if you have PsA, read this! It's cool!" bunch of blurbs - very Andrew Sullivan (my blogging style hero). I'm also going to broaden out and write a bit more on autoimmune disease in general. It's all related.
Also, every week, I will write at least one longer piece on something I'm thinking about or researching. For example, this week I'm learning a bunch about comorbidity and autoimmune disease - why do these diseases like to hang out together in a pack? Why if we have one are we more likely to have two?
And finally, every week, I'll post a N=1 post - how am I doing? (BTW - I'm flaring right now and the pain in my hands and elbows is excruciating - please forgive the grammatical errors and boring prose).
Thanks everyone for making this one of the most amazing experiences of my life. Keep reading, I'll keep writing. I hope to make this blog useful and usable for those of us who want to better understand the mysterious ways our bodies behave.
Friday, March 27, 2009
More than a green blanket
My daughter has a knitted blanket that has been on her bed since she was 1 month old. It's a lovely jade color, with a complicated zig-zag design. After 10 years, it has become a member of the family - something we all recognize and include in our sense of "home".
This blanket was given to my father-in-law, a surgeon on the East Coast, by one of his patients when she learned he was going to be a grandfather for the first time. It was a gift for my daughter, but really it was a gift for him, because he had gone over and above the call of duty for her in a time of surgical need.
My father-in-law is the kind of doctor you want to have - his patients and their needs seem to always come first (even ahead of Thanksgiving dinner, sometimes). When you call him with a problem, you know he's not just listening to a list of symptoms, but instead he's listening to how you are feeling about those symptoms. He's the one who convinced me that I did not have lymphoma a few years back, even though a few symptoms were pointing that way. It all didn't add up, and he took the time to work with me and my fear to get to the right diagnosis. "If it looks like a duck, and quacks like a duck... it's not a zebra, Jen" I remember him saying in a warm, confident voice. He was right. It was a duck.
I was reminded of my father-in-law when I read this article from the New York Times about the relationship between a patient and his or her physician. No shocks here - just a call for connectedness. This article made me think about the many doctors I have now, and have had. Read it and think about your doctor, and doctors, think about your patients.
I'm lucky to have a good doctor in the family - but we all should have a doctor we would make a blanket for.
This blanket was given to my father-in-law, a surgeon on the East Coast, by one of his patients when she learned he was going to be a grandfather for the first time. It was a gift for my daughter, but really it was a gift for him, because he had gone over and above the call of duty for her in a time of surgical need.
My father-in-law is the kind of doctor you want to have - his patients and their needs seem to always come first (even ahead of Thanksgiving dinner, sometimes). When you call him with a problem, you know he's not just listening to a list of symptoms, but instead he's listening to how you are feeling about those symptoms. He's the one who convinced me that I did not have lymphoma a few years back, even though a few symptoms were pointing that way. It all didn't add up, and he took the time to work with me and my fear to get to the right diagnosis. "If it looks like a duck, and quacks like a duck... it's not a zebra, Jen" I remember him saying in a warm, confident voice. He was right. It was a duck.
I was reminded of my father-in-law when I read this article from the New York Times about the relationship between a patient and his or her physician. No shocks here - just a call for connectedness. This article made me think about the many doctors I have now, and have had. Read it and think about your doctor, and doctors, think about your patients.
I'm lucky to have a good doctor in the family - but we all should have a doctor we would make a blanket for.
Thursday, March 26, 2009
What's your buzz cut?
Today's New York Times has a beautiful article about self-image and illness, written by Dana Jennings, a blogger/writer who has prostate cancer and has gotten a buzz cut to help get through. He says:
I despaired in October, as you can tell if you read the first few posts on this blog. I wallowed. I grieved deeply for the me that I felt (and still feel) was lost.
This blog may be my buzz cut. I can't be silent. I'm writing in order to create the new me - a me who is sick, but is also many other things: a researcher, an advocate, a writer. Dana Jennings says about his true self:
In a time of utter vulnerability — having already weathered three months of post-diagnosis ups-and-downs — I needed the primal ferocity that a buzz cut proclaims. I needed to look like a soccer thug or an extra from “Prison Break” to help get me through surgery, the physical indignities of post-op life, and my subsequent radiation and hormone therapy. I still do. My prostate cancer and its treatment have transformed me — in body and spirit — and the buzz cut has helped me cope with those changes.For many people, including myself, chronic illness profoundly changes who you think you are. Jennings quotes Dr. Robert Klitzman, an associate professor of clinical psychiatry at Columbia University Medical Center, who aptly says:
“The challenge with cancer is to find a new sense of self... because the narrative of yourself has been disrupted".I think this is true of chronic illness as well. I know I have struggled immensely with my personal narrative since October, when I found out I have three inflammatory and chronic diseases (celiac disease, psoriatic arthritis, lymphocytic colitis). My childlike belief in my own invulnerability has been exchanged for a terrifying sense of my own mortality. While externally I'm talking and writing and "being" my disease, internally I cringe when I think of myself as someone who ONLY is sick. The other identities - aspiring writer, competent mom, non-profit professional, loving wife, all seem to hide behind the title "sick person".
I despaired in October, as you can tell if you read the first few posts on this blog. I wallowed. I grieved deeply for the me that I felt (and still feel) was lost.
This blog may be my buzz cut. I can't be silent. I'm writing in order to create the new me - a me who is sick, but is also many other things: a researcher, an advocate, a writer. Dana Jennings says about his true self:
I am basically a cream puff. But I like the contradiction, the tension, that the buzz cut seems to represent between my inner and outer lives.
I need to write to get through my day. What's your contradiction? What's your buzz cut?The buzz cut is a kind of veil or, perhaps, a mask hiding my secret identities: one of which is being a cancer patient.
But to be honest, I don’t think I’m hiding anyone. We are, all of us, a bundle of apparent contradictions. Even though I’m a dreamy pragmatist, I need the guy with the glare, the shaved skull and the brutishly broad forehead to help me through the day.
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