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...
Showing posts with label Dupeytren's. Show all posts
Showing posts with label Dupeytren's. Show all posts
Saturday, March 17, 2012
Saturday, February 25, 2012
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.
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.
Wednesday, February 8, 2012
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.
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