Addressing my Dupuytren's

Dupuytren's Contracture
c/o Janet's hands
101 Viking Lane,
Diabetes, CA  12121


Dear Mr. Dupuytren's:


It has come to our attention that you have been spending an inordinate period of time occupying Janet's hands.  We understand that you have aggressively progressed especially on her right palm, but that you have extensive expansion plans to move to the left and perhaps involve multiple finger distortions.


We respectfully request that you cease and desist immediately, or we will have to take more drastic measures to control your occupancy.  Obviously the use of vitamin E, DMSO, or even Lugol's solution (iodine) has not loosened your hold on Janet's hands.  You heedlessly move around converting collagen type I into collagen type III. This is a very bad idea, as type III is less supple and will accumulate and contract over time.


We have plans for a counter attack in one week.  Unless you opt to move on your own, we will be forced to wield a large needle and start nicking at your most beloved cords of contracture.  We have tried reason with you in the past with no response. Now it is time to bring in the big guns and force your hand (so to speak).


Regretfully yours,
Janet's Brain, Body, and Soul


---
Anyone who would like more info about Dupuytren's can Google or check out Wikipedia. But basically, I've had these nodules on my hands for several years, and now they've begun to turn into stiff cords. It's pretty aggressive I guess and on both hands, but so far I have one contracture that is getting fairly bad.  Cause is pretty much unknown, but there is a genetic component, and it is more common in people with Scandinavian heritage and Viking in their blood (ha! I would have made a fairly decent Viking I think).  It's also associated with other risk factors like being a man (not the first time I've had something that only men are supposed to get), diabetes, and liver fibrosis.  So probably my genes and my diabetes are messing with me.


No big surprise.


Here are a couple of photos of my right hand to illustrate the problem:

Really, there hasn't been too much functional loss except for yoga poses that require palms flat to the ground. But it's gotten worse in the past couple of years and now I do get irritated by not being able to straighten my hand and I know it will only get worse if I don't do something about it.


So, I met with a new hand specialist - I did a lot of research and had talked to another "hand guy" in Oakland. But the orthopedic surgeon types want to do surgery to remove the affected tissue. And I do not want to have the most radical treatment first when there are less invasive approaches to try first. 


I have an appointment to get a "Percutaneous Needle Fasciotomy", also called a "Needle Aponeurotomy". It sounds scary I guess, but really it is a series of nicks along the cord done with a needle that allow manipulation of the hand to straighten it out.  There isn't any big incision, and the recovery time is very short (a few days vs. a few weeks with surgery). The rate of recurrence isn't any worse than the track record of surgery either, but there is a likelihood that it will recur - and I'll probably have to have my left hand worked on pretty soon (earlier would be better than I've waited for the right hand).  Also, if after a few months it seems not 100% where I'd like it, this doc will go in with an even newer treatment of collagenase injections (Xiaflex).  His approach is a little different than the other doctor I talked to in this regard too - the other doctor didn't want to consider it and was somewhat disparaging.  My new hand specialist is a plastic surgeon, and said that he uses based on learnings from using Botox - i.e. he spreads the injections around to "poke holes" in the cords rather than squirting it all in one place.


I'm pretty happy with this plan and I'm excited to see how well the NA will work on my right hand. Keep you fingers crossed for me (because I really can't anymore, at least on the right hand)!


Just a quick update on my internal issues - stomach feels pretty good, still taking the trial medication without any side effects, working on blood glucose control using the CGM (continuous glucose monitoring), and I'm getting all caught up on my maintenance schedule in general (eye exam, mammogram, standard blood tests, etc.).  Also still seeing Dr. Who for acupuncture - I don't know whether it's making a big difference or not, but I still want to stack as many cards in my deck as possible for good health.

It's just a toad.

I've mentioned being very behind on things.  Wait, maybe that was on my other blog.  Well, anyway, one of the things I fell behind on (among the many things) due to being sick every other week for over 3 months was my "fun" science reading in my office (not to be confused with required science reading, which can be sometimes fun and sometimes so boring that I feel like sticking needles in  my eyes).  So in an attempt to reign in the chaos of my office I've been clearing out some recycleables, aka documents and journals, a little at a time.  My desk was in pretty good shape by end of last week so today I tackled some of the reading on my table. Three categories - 1) scientific journals that I should at least scan through for articles relevant to me, 2) trade periodicals like "CAP Today" that are relevant for diagnostics industry in general (where I work), and 3) the science magazines aimed at scientists (both professional and armchair) that are pretty fun to read through.  So those last ones are the hardest to part with if I haven't gone through them, and I often have issues of Science News or The Scientist that are many many months old.

So what?  Yes, get to it. Today I stumbled on an editorial piece in The Scientist from August of this year written by Richard P. Sloan - a bigshot professor at Columbia in Behavioral Medicine.  It was entitled "Toads". I thought maybe there would be something about poisonous toads taking over Australia, or about the disappearance of amphibian species (but that would be entitled "Frogs", not "Toads" I would think).  But the subtitle is "Ascribing benefits to the experience of devastating illness or trauma is fraught with hidden dangers"

huh?  Well, here is a link to the article if you want to read it yourself, but I will summarize a little: http://the-scientist.com/2011/08/01/toads/

The highlighted quote (you know, the one that they make in really big font in a side box of a magazine article to grab your attention) was "Casting an illness as a special opportunity for growth trivializes the adversity".  Now, I do not agree with all the statements and analogies in Dr. Sloan's piece. But many of us with chronic diseases or those who survive cancer, et al. have likely experienced something akin to a) an examination of ourselves and our behaviors, including guilt, because there is an assumption of moral irresponsibility associated with many illnesses, b) maybe some personal growth and change because illness can make you appreciate the gifts of life more (but as Dr. Sloane points out, there are lots of human experiences that lead to this type of growth that don't suck as much as being really sick), and/or c) comments from people suggesting you could be worse off because (diabetes) can be controlled and you can (opt to) live with it. I haven't had cancer yet, or any of a host of other "worse" diseases,  so I'm sure this last doesn't apply for all other illnesses.  I haven't had any comments like that about my digestive woes for example, except people who ask if it's because my diabetes hasn't been well controlled.

Or maybe you've suffered a traumatic illness and none of these things apply to you. Which makes sense to me, because like the author, I seriously doubt anyone would say "oh I wouldn't trade my hideous experience for anything in the world. It's the best thing that could have happened to me." And everyone takes away something different from every experience - both good and bad. 

Well, except for Lance Armstrong I guess.

Personally, I do like to take the opportunity to do some self-examination and regard the perspective of the world when bad things happen to me. If possible - but even for an optimist it doesn't always work that way. I have had at least one or two experiences that couldn't be spun.

Anyway, the toad reference was sort of obscure for me but it had something to do with realizing that despite a toad being adorned with jewels, it is still just a toad.  Dr. Sloane references a current agenda in biomedical research that is looking at the "postraumatic growth" or "benefit finding" aspects of the human experience with illness.  Apparently some researchers used a reference to The Wizard of Oz, stating that early stage breast cancer can lead to the "Emerald City of post-traumatic growth". Which confused me because I always thought the Emerald City was about some deception  and representing something to do with capitalism or money - I don't remember exactly what now, but I do remember in the book they all had to put on special glasses with green lenses before entering the city.  I guess the movie has a different version of the Emerald city where anything is possible. A much more optimistic take on the story, admittedly.

Again, I didn't follow the reasoning of the entire editorial, but I did agree with the final sentence of his piece:

"Illness is not a special blessing. It's not a visit to an Emerald City.  It's just a toad."

(Amen, brother!)

Things we all can agree on...

#1 - being healthy is great

#2 - doing your taxes is kind of a drag

#3 - a sunny afternoon after a morning of fog and clouds feels like a gift

(feel free to add to this list - just a couple of things that popped in my head today)

Update: I'm 6 days into my guinea pig gig - so far no side effects from the drug that I can identify. Yesterday I felt a bit yucky, but I still have days like that at this point. I tell you what though - I have to hurry and gulp down the 7 (yes SEVEN) tablets because they taste terrible! I think they are pretty acidic.  I looked up the side effects for this drug before I started (Kuvan).  So funny (not really, but kinda) - some significant percentage of people in the PKU clinical trial had nausea as a side effect. 

oh, and vomiting too. nice.  

So that is why I'm so relieved to feel pretty okay so far.  After 4 weeks I switch to a higher dose though - 14 tablets at a time  (that's right - FOUR plus TEN = how many pills I have to gulp down). Keep yer fingers crossed that I don't start barfing at that point.  If it seems odd to anyone that I'm testing a drug that should help my stomach function better but that might make me sick. Well, join the party! 

Speaking of things that make me barf. I realized yesterday that one reason it's hard to identify a specific trigger for the extended episodes of vomiting because so many things will make me nauseous and often result in me throwing up. Usually just a one-off thing - or at least short-lived.  Jet-lag (check), migraine (check), too much stress (check), riding in the back of a cab with a terrible driver (check and double check).  I'm serious - I have had to ask a driver to pull over and let me barf in at least 3 different countries!

Update #2: RE: my healthcare"team" composition...

I decided not to divorce my endocrinologist and dump him for someone new. I've been seeing him for over 20 years now and I went in to see him recently thinking at least I should talk to him in person before going to another doc. Then I changed my mind. I don't want to train another doctor right now. I'm already seeing too many new doctors who don't know me. 

I made an appointment with a hand surgeon for my Dupuytren's yesterday (or maybe monday)...he's located a bit farther away than some of the other options so now I drive all the way down to Stanford for my GI doc (45 minutes in no traffic), out to Orinda to see my endocrinologist, and up to Marin to see this hand surgeon. So much for centralizing and simplifying my medical/health team!

If you're wondering about Dupuytren's, don't worry - I'll write a post about just that next time, what I'm hoping the doctor can do for it, and include a picture of my hand. But for now it's time to sign off. I've been sleeping more, and I think that is a good thing. 

#4 - sleep is good.

Chapter 5: In which Janet is just one step removed from a lab rat

Boy, it's been awhile since I've posted. I am happy to report that I'm feeling better. Not 100%, but back in rebuilding mode.  I have a lot of ideas I could write about, but today I'll tell you about a clinical trial I signed up for.

The GI doctor at Stanford is good. She slapped me into the hospital on the spot when I went for my first office visit. I got stabilized, and pumped full of electrolytes and fluids. I was there for 5 days, getting out just in the nick of time*. Anyway, they also did some tests, like 4 different blood draws, an endoscopy, and a stomach emptying study that involves eating radioactive scrambled eggs and then getting scanned every hour for 4 hours.

No surprises really. I had some shallow ulcers in my stomach, likely from being sick so often and over a long period of time.  So I'm on Prilosec to manage the acid. I'm still off coffee and alcohol and spicy foods too, so I plan to let my tummy heal up thoroughly before I jump into my vices again.

Also no surprise that my stomach didn't empty very fast. I've had intermittent gastroparesis (what they call it when your stomach doesn't empty) for over 10 years. But usually mild and I really haven't had to make any permanent lifestyle or eating habit changes over the years. Well, the plumbing has been pretty much backed up to a standstill over these 3 months or so.

According to the GI, there are a lot of overlaps between gastroparesis and cyclic vomiting syndrome (CVS).  I'm taking a drug to prevent migraines which will hopefully remove at least one trigger for a CVS episode.  Otherwise, the treatments are more of less the same in terms of anti-nausea and anti-emetic drugs.

Currently, we are mostly addressing the gastroparesis - although there aren't really good treatment options out there. I react badly to the most common treatment, Reglan. I took some antibiotic that promotes motility in the stomach, but it only works for 2-3 weeks.  I'm using Iberogast - a tonic that has a bunch of different herb extracts in it - it does seem to help. And digestive enzymes from Trader Joes.  And Dr. Who is also addressing gastroparesis and general digestion with acupuncture and Chinese herbal formulas (which taste nasty if you ask me).

Are you bored yet? Wondering where the hell the lab rat is?

WARNING: This content contains science geek information that may or may not confuse or interest you. 

I signed on for a pilot clinical trial at Stanford for a different/new drug to treat gastroparesis. I don't say "new" because the drug already is approved for treating phenylketonurics (PKU). It is a co-factor for an enzyme that can lower Phenylalanine levels in PKU patients.

This drug is also a co-factor for nitric oxide synthases (NOS) - and without getting too scientifically confusing, let's just say that NOS abnormalities are found in gastroparesis - the NO is needed for the action of the smooth muscle in your stomach.

Gastroparesis is also more common in diabetic women, and there is a gender difference in the NOS malfunction. In lab rats. (oh, that figures, right?)

So, I signed up for a pilot study to test the drug in humans. Are you as excited as I am?!  Seriously, this will at least make things interesting for me.  It was really strange being on the other end of an informed consent after working from the diagnostics and pharma clinical trial side.  They are recruiting 20 diabetic women who've had diabetes for at least 5 years and have moderate to severe gastroparesis.  I think I am #7.  I have to get a couple more screening tests and then I'll start taking the drug on Feb 3rd.

I guess it's a little crazy to sign up for a trial like this when the side effects include headache, nausea, and vomiting.  But those things happen in the minority of subjects, so I'm keeping my fingers crossed that I won't have any side effects that would cause me to withdraw from the trial.

*We went up to the NW to visit colleges for Teen Wonder and family over MLK weekend. I had made most of the arrangements, but Mr. Wonderful was left holding the bag to find the hotels and possibly take both kids on this trip to Seattle and Portland (and Olympia where Evergreen College is and where Teen Wonder will likely go next fall). So I was released on Wednesday afternoon and Thursday morning we all got on a plane to Seattle. I took a lot of drugs over the weekend...

It's a New Year! I resolve to stop being "special"!

Hahaha! right.
It's a funny thing - and I know anyone who suffers a chronic and/or mysterious and inexplicable disorder can relate.

It's not that great being special. Wouldn't it be great to just be average and normal?  Get average scores on your lengthy laboratory reports? Just see a doctor once a year for a "check-up" - or maybe only once every 2-5 years?  I know people like that (like Mr. Wonderful).

On the other hand, as I share more about my health now than I ever have in my life, one interesting result is the realization that once again, "we are all special in our own special way".  Yes, there are a majority of basically problem free bodies running around us, and it is so easy to just assume that this is really how the majority of people live their lives.  Actually I hope that is true - it would make me happier to know that more people feel pretty good most of the time than to imagine most people spend a lot of time suffering some ailment of another. I may feel envious, but never would I wish a health problem on someone.

I guess being special is just that. If you are special, you can make of it what you will.  So many people have shared their own stories with me, and it is comforting to know that you are never really alone unless you choose to be.

Starting this new year, I will say that I have so much love and affectionate feeling in my heart for the friends, colleagues, family members, and even relative strangers who have reached out to say something supportive. I have to send out props especially to my mom who flew down without hesitation to help out Mr. Wonderful, who was drowning under the stress of running a household (during the holidays!) and parenting.  The Casserole Brigade from our Parish came to the rescue several times.  And Mr. Wonderful - what can I say? He's my hero.  He and our kids fill this house with life and love (and chaos and conflict too).  Even with my current personal struggle with my own well-being, I'm still damned lucky!

So here's to 2012 and I'd like to resolve to being just a little less special!

a little on convalescence...

I wish I could say "a very little" on convalescence, but it seems I'm learning another one of those life lessons on not pushing things faster than nature intends.

Nature does NOT intend for you to have mild green fish curry with rice instead of plain noodle soup even though you've been "okay" for a few days...

Nature does NOT intend for you to go to a doctor's appointment with a brand new endocrinologist who will scrutinize your records and not know you or your history. Have a nice anxiety attack and throw up instead.

Nature does NOT intend for you to skip medications until Nature says it's okay. And you do not get to know when that is.

Nature does NOT intend for you to do last minute Christmas shopping at crazy places, and then still be able to wrap gifts and play Santa on Christmas Eve.

Nature does NOT intend for you to have a glass of wine or champagne to celebrate anything (ever?)

Nature seems to have a lot of rules about convalescence that I never heard of before after being sick...and I am having a bit of a time dealing with it.  Personally, I've been in the bounce back quickly and strong club for the most part.  But the good news is that I'm starting to reach an acceptance about it. And even wondering whether  I really ever did bounce back so quickly as I thought.

just a food for thought as I ponder how to approach a New Year...

When you can't tell if you are derailed or moving forward...

...rest assured. We are all still moving forward whether we think so or not.

I had been feeling derailed due to the last episode of CVS and how long it's taken to feel recovered. But some things happened this week, so I am moving forward nonetheless.

I've been feeling emotional, and worried that means my hormones are wacky. But since there's nothing I can do about my hormones at the moment, I decided to stop and feel some of the emotions.

For example, I was thinking a lot about one of my first aerobics instructors from Gold's Gym in Berkeley after I moved here to go to grad school. Jimmy. He was so funny - and in my memory I still see his late 80s aerobics outfits burned there permanently. We got to be friends like you do when you are the student who always goes to the front of the class, and you ride BART together sometimes and compare mixtapes in your Walkman to see what the other is listening to.  But still "gym friends" - one of those special compartmentalized friendships that we form, and they seem pretty  transient when you look back over longer periods of your life. I think I started thinking about Jimmy because the satellite radio in my car is dialed to "First Wave" - ie alternative from late 80s early 90s - and they've been playing a lot of Yaz. And that was one of Jimmy's favorites. And I've been boning up on some HIV science for work lately. And Jimmy was the first person I knew who got AIDS, and then died too quickly after diagnosis.

I saw the acupunturist/chinese medicine man on Wednesday.  He was quite remarkable - I can see why he has a cult-like following in Yelp and on BPN. I'll call him Dr. Who in honor of his cult status and enigmatic apparent brilliance since I'm still uncomfortable using people's real names in my blog without their knowledge or permission.

It took me like an hour and a half to fill in all the questionnaires for this first appointment ahead of time. Then we spent an hour going over all of it.  As I suspected, my body is out of whack. duh. But he didn't treat any of it like it was incomprehensible. In fact, my long term health history is pretty interesting, and I have long thought that the right type of doctor would want to dig in and figure out what the common thread is to my largely over-reactive autoimmune system. Because the stuff I have doesn't all tie together like the textbooks...but there have to be some threads tying them all together. It wouldn't be right otherwise to have diabetes, chronic sarcoid, weird stuff in your history like Guillian-Barre and Horner's syndrome, and cluster headaches, and thyroid nodules with autoantibodies, and blah blah blah...you can go back to an earlier post if you want a current laundry list. But the history is even worse!

Dr. Who is fascinated my my history, has seen similar complex people, and wanted to know what I thought about how some of these things tie together - especially the sarcoid and autoimmune issues and had I ever been tested for Lyme disease (yes, in grad school when I had some weird hip dysplasia thing), and what did I think about other infectious causes (yes, I've thought about that a lot given some of this started when I went to Africa for example).

He even works with Duypetren's (though I still have to get the finger straightened out that's already curling up).

Dr. Who had some scoring thing for hormone balances and depletion and felt my pulse (I guess the Chinese version) - declared my blood was barely moving and given the state of my adrenals and testosterone, etc. etc. that it was only a testament to my force of will (and I guess my sense of humor) that I'm still functioning at as high a level as I am.

He seemed to "get" me - which scared me a little to be honest. When I lay down on the table to get needled, he left the room for a few minutes and I burst into tears. I had to get them out to make room for some hope.

I realized that this force of will thing is big for me. And the thing about using your will to move you around and through obstacles and to move what feel like mountains just to get through one day to the next is that you get cynical. You start to believe only in yourself and that there isn't much to be done "for" you medically so if you want to carry on you'd better just get to it.  To give up some of that control to make room for hope is really hard. Hope should be omnipresent - it is the ultimate healing sentiment. It also means taking that risk of disappointment and failure.

I'm such a dork.  I think or did think of myself as a very hopeful person.  But I used to think I was romantic too, and eventually realized I'm completely cynical about love too.  Although Mr. Wonderful changed my mind and heart in that regard, so I know that change is possible. But it takes a long time.

After over 30 years of dealing with chronic disease(s), the fact of the matter is, I guess, that I have lost hope and replaced it with stubborn self reliance and force of will. Dr. Who made me want to hope for a change.

Keep Calm and Carry On!