Health Time Capsule

Day one of the Health Activist Writer's Month Challenge, and I already messed up! I wrote another post yesterday but then realized the challenge comes with a writing prompt for each day (duh!) So this first post will be a day late and I'll catch up with a second post shortly.

I'd like to make a time capsule that would be opened n 2112 - 100 years from today.  I've already had type 1 diabetes for 32 years, and so much has changed during that time. For my capsule, I'd include one of the urine sugar tests that I started out with in 1980 - with the tubes to transfer urine into and the tablets that would turn blue if you were "good" and orange if you were "bad". I'd like to include my very first diet plan and food lists - it was all based on exchanges and very rigid. We were supposed to eat the same amount of food at the same time each day, and get the same amount of prescribed exercise at the same time each day to go along with our single, or maybe double injection of insulin for the day.

I wasn't very successful with this after about a year - my pancreas was still making a little insulin during that honeymoon phase, but after that things were hairy.

I'd like to include a tube of the first glucose strips we used to start testing real-time instead of using urine testing that would include some period of time and amount of sugar depending on your renal threshold. A major improvement.  Then my first glucose meter, in 1988 - it came in a case the size of a laptop case. The large insulated cases for carrying around your insulin - separately of course. Then perhaps a smaller meter and case, including insulin and syringes for comparison.  A collection of the variously freaky spring loaded lancing devices. A tube of lanolin.

How about some glucose tablets for hypoglycemia? Big square ones in blister packs, tubes of gel glucose, paper envelopes filled with 4 sugar cubes each (to make the recommended 16 grams of glucose to take at a time), and those I use now - tubes and jars of glucose disks that are sort of like big chalky Sweettarts.

I'd include some of the different log books I tried over the year. The 5 different cables to connect different meters to my old Mac and then PC to download glucose readings.  I'd include a few of my favorite books from over the years - the early management guidelines, "Diabetes is not a piece of cake", "Stop the Rollercoaster", "Pumping insulin", "Carbohydrate counting", ...as many as would fit I suppose, and it wouldn't be all the books I've consulted over the years. I would also include a copy of the DCCT study paper - the one from the original publication. This is the basis for all the improved guidelines over the years - before it's publication in the 1990s, there wasn't a good understanding of the relationship between blood glucose control and complications.

As a snapshot from today, I'd include my pump, a couple of the infusion sets and the spring loaded inserter. I would also include my continuous glucose meter, one of the sensors and THAT spring loaded inserter. There is a lot of poking yourself with spring loaded sharp devices in this diabetes business. I'd include he Carelink device that talks to my pump and downloads all the data into a web-based analysis program. And lastly, the home HBA1C test that is recently available (again) for consumers to buy themselves. Glycosylated hemoglobin levels give you an idea how your overall control is for about a 2 month moving window of time.

In the time capsule, I'd include a letter describing the wonders of changing technology and how I've benefited from the new tools developed for diabetics over the years. I'd send my hopes for discovery of a way to prevent development of type 1 diabetes in people who are at risk and have developed autoantibodies. Lastly I would be hopeful for a cure - but at this point for me I have become an early adopter of new tools (I wasn't always).  Prevention rather than cure are how I would prioritize the current and future research. And I would sign off with the wish that I could see how much things changed in 100 years. Given how much things have improved for diabetics in a 3rd of a century, I am sure it things will be available that would blow my mind!

WEGO Health - a blog challenge for April

Time to get some writing discipline around this Self-Help book.  Recently I visited a cool website by a blogger with diabetes who is also an art therapist. And I saw she was a member of this site: WEGO Health, a site for Health Activists. I took the quiz "Are you a Health Activist" and guess what? I qualify. But compared to most of the members of this site, my little blog is not a huge contribution to health activism.  I'm not clear that I can or will become a busier health activist, but I am outspoken and honest about my own experiences and my views on different aspects of healthcare and specific diseases/disorders.  So what I did do was to sign up for the Health Activist Writer's Month Challenge. I'll do my best to post each day for the month of April (not going to be the easiest, since it is a busy month for me).  I'll try and include personal experiences as well as information and resources I use to get me through my days in a healthier way. 


See below for the invitation to join me:


 Hey everyone - I just wanted to tell you about a new activity I'll be doing this April. The Health Activist Writer's Month Challenge hosted by WEGO Health. I will be writing a post a day for all 30 days. I hope you'll join me in writing every day about health. It's going to be a lot of fun and I'd love to see what you have to say about each of the topics, too. All you have to do to join is sign up here: http://info.wegohealth.com/HAWMC2012 and you'll be able to start posting once April rolls around. Looking forward to writing with you!

On Blessings and Gratitude and other Stuff

So, for any Catholics or Protestants of the Apostolic brand - you all know we are in the middle of Lent.  Some number (2,3,5?) of years ago, I decided to do something proactive for Lent rather than giving up some vice or whatnot.  I made a commitment to a practice of gratitude. Although I've learned recently I'm actually more like Thomas Jefferson and the Deists of his age*, I still honor the Easter season. Because you don't really need to invoke the magic of a reincarnation of a man born of a virgin who is the son of God incarnate (it's the magical stuff I get stuck on), to appreciate the real live magic of renewal and rebirth that happens in the springtime. Look around you - aren't you amazed?!

Over the years. this time of year has become a "fully loaded" emotional time for me, and for our family in general.   Two times during Lent I've had a pregnancy I didn't think would make it through to a real live baby. The first time I was wrong, and after weeks on bed rest with threatened demise of the pregnancy (and  host of other problems!), Teen Wonder emerged - the survivor. The understated Tiger she will always be. Fighting because she knew what she wanted even though she didn't yet know what it was. So her. And I'm so grateful for that miracle. Three years later Teen Wonder's father and I divorced (well initiated the divorce) during Lent.  The second time I went through a difficult pregnancy during Lent, I was right, unfortunately, and I'm still struggling with that bad ending. Though a little less each year that goes by.  Then in 2005, our adoption of Wild Thing was finalized during this same season - amazing ride that was!  And that year Easter fell in between the court date in Kazakhstan and our "Family Day" of April 8th. That was the day we went to the Baby House as a family (Mr. Wonderful, Teen Wonder who was at that time just pre-teen Wonder, and I), and Wild Thing came away with us - leaving the only home he'd known in his 8 1/2 months to come and make a bigger family with us.  Teen Wonder and I thought we were so clever on the first anniversary of this Family Day when we coined it the "Roman Holiday". I'm not sure she even has ever seen the movie, but I explained it to her and we laughed and ever since that is what we celebrate. Roman Holiday to us - Family Day to everyone external to us. This year our Roman Holiday is on Easter Sunday, and Wild Thing is more curious about the whole then than ever before.

I suppose it is understandable, but my emotions are typically all over the map this time of year, and a practice of gratitude can keep things pointed in the right direction. The other direction isn't so great and I've gone there enough times now, I no longer need to visit that place. Recently I've expressed gratitude for my improving health here on this blog - for new drugs, believers in the power of healing, plastic surgeons who don't want to scar up my hands, technology that makes it harder for me to be a bad diabetic, friends and family who support me and really (really) care about me. I hope that comes through in my writing. All of this is really amazing to me - I feel incredibly lucky. I know that there are so many people out there with similar or worse health issues who don't have the resources or the support that I have and that is not fair or just. Still, I am so grateful I do have what I have.

Tonight I was reminded that in my very immediate community of friends and colleagues, there is another type 1 diabetic, 2 friends with Dupuytren's contracture in their hands, and another chronic sarcoid patient.  I believe this reminder helps me fulfill my New Year's resolution to not be so f@#*ing special - I am in fact surrounded by loving and sincere people who suffer the same as me, laugh at life the same as me, shrug away irritating symptoms and required lifestyle changes the same as me.

Yay! And I hope that every person suffering a chronic and/or debilitating disease can find the support they need in their community of friends and family. None of us will live forever - but we all deserve to live happily or at least surrounded by understanding, love and support.

I have that. And for that I am grateful. Personally, I belive that Jesus would be pretty happy with this much - no miracles required.

Today I am grateful that I am not all that special. And I'm grateful to live in such a terrific community (both home and professionally).  So, thanks!

*So I listened to a podcast on Thomas Jefferson's version of the bible (New testament) where he basically cut out anything that required magic and miracles and kept the messages of Christ's teachings. Thomas Jefferson believed in a "God", but that this God didn't play a hand in our every day lives in a direct way.  He didn't believe all the magical stuff, but he did believe Jesus was a real person and that the ethical system of Jesus was the finest the world has ever seen. Jefferson's version of the bible was incredibly short - I don't remember at the moment, but something like 46 pager, or 64 pages...anyway it was much less than 100 pages and so quite short really. I keep meaning to look it up - you must be able to read the whole thing on the internet somewhere, right? One of these days...

Needle aponeurotomy - success!

It's been awhile since I've posted. I've been trying to use the power of gratitude in my life to continue a physical healing path. Practicing gratitude is a nice thing to do during Lent (or during the springtime in general if you don't observe Lent). It's the time for new life and change...we have to embrace it!

What I'm grateful for this week? The results of my hand procedure - needle aponeurotomy, or NA release for short.  Last time I showed you a couple of pictures of my right hand and the cord that was pulling my middle finger toward my palm. I have Duyputren's in both hands and fairly extensively, but most of the nodules have stayed mostly flat...except this finger.

I mean really - I couldn't flip anyone off in traffic!  Who lives like that? It was horrible!

Anyway, I had this procedure last Friday, and so one week out I thought I would show you the results.  The procedure didn't really hurt much. It was like going to the dentist where the only part that hurts are the shots of novocaine before the drilling.  As with my dental experiences, I have some resistance to novocaine and it takes extra shots to numb me. But still...not too bad and I didn't have to go under general anesthesia, so the whole thing took less than 45 minutes there at the doctor's office. I even drove myself home.

Once my palm and most of my fingers were numb, the doc used a sharp larger gauge needle to nick and saw at the cord in about 10 different spots.  Every once in awhile he'd stop and try to open my hand to straighten.  He warned me that there may be some popping sounds when the release happened. But I still wasn't prepared for the loud CRKCRKCRKKKCKPOPPOPPOP sound when my cord finally gave out.  He said probably due to diabetes the cord was a little more gnarly than on non-diabetic patients (makes sense to me since there could be passive glycosylation and bond formation in the collagen structures in presence of excess sugar).  Anyway, I felt like such a bad patient already - wincing and "ouch"ing with the shots - when that sound hit, I instinctively drew my knees up toward my chest in some protective (knee jerk, duh) reaction. It didn't hurt at all! Just an unnatural breaking sound that you instinctively feel is just plain wrong coming from your hand.  There was a second popping at my middle knuckle, but it wasn't quite as bad and I was more prepared for it.

Then he bandaged me up and sent me on my way.  It's been a bit stiff, not too sore except when I stretch it out which I'm trying to do frequently.  Typing has been a bit of a challenge, but I was able to go to work right away on Monday. Easy peasy!

Maybe you can see a couple of the punctures and a little swelling on my palm, but not bad. 

Below is the "before just to refresh your memory (and mine!)

After:

And my hand is nearly straight!

Before - I couldn't place my palm on the counter at all. 

Yay!!

I am very GRATEFUL for this success on my hand!

And I'm feeling good overall - no stomach issues lately (I'm still on the experimental drug regimen), no migraines or unmanageable headaches.  I really need to plot out a fitness regimen, because I'm still not in very good condition and my blood sugars are still somewhat unstable. Exercise really helps even all that out.

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.