The HAWMC (yesterday I left out the "M" for month - oops!) prompt for today - #4: Why do you write about your health?
When I started this blog, not so long ago, it was a release for the frustration I was feeling at having a complex medical history with a need for multiple specialists - and having to navigate all of that on my own. Since I don't belong to Kaiser (where patient management and prevention is The Way), and I'm too picky to automatically accept referrals for specialists from my primary care doc without vetting them in person or by phone, I really have to become my own coordinator and advocate. Really, I've been doing this all along. However, I have not made managing my health needs a top priority over the needs of my family, and even my "career" such as it is.
That had to, and has to continue to change. I can't change who I am, so my responsibilities to others will probably always come first. I really don't want to change that - just to find a better balance.
From late October through mid-January, I was sick. Very sick in a 5 days vomiting, 4 days starting to recover, wash. rinse. repeat. sort of way. So clearly, I had to drop everything else and figure out how to get out of the cyclic vomiting (syndrome) in which my formerly intermittent/mild gastroparesis become a full stop of any digestion whatsoever. Which, since I have type 1 diabetes, means that I needed to better manage that disease while figuring out why my stomach just quit working on me. I also have a collection of other special issues and medical needs - most of which center around an autoimmune fixation for my melodramatic immune system.
That damn thing is always over-reacting. I hate drama.
I guess that the impulsive decision to start my tongue in cheek Self-help Book served as a way to organize my tactics, form an overall strategy, and to document some of the process. Because in the past I will tackle a problem with lots of research, reading, analysis, and self-experimentation - but unlike the detail oriented scientist I am by day, I often failed to record my findings. So my approach has been inconsistent, and I can't always remember what worked and what didn't.
Another result of blogging that I should have expected but didn't, is the sharing (over-sharing?) of my health issues. I am very very open with people when they ask about diabetes or any other chronic health issue that I have. But usually it is 1) Just The Facts, Ma'am, or 2) You Can Do It!, but only very rarely and with people I trust do I talk about how I Feel about my health problems. I guess I don't want people to identify me as a diseased person. Janet the Diabetic, Janet with Stomach Problems, Janet with The Claw, blah blah blah.
And there seems to be a common misperception that I don't ask for help. Or don't know how to ask for help. But that's really not true. It's true that I would have preferred to spend a happy life providing others with help without ever needing any myself. But wouldn't most people? And it's true that I have this stubborn force of will issue going on. But is that really so bad? It is no fun to be dependent on others to get through your day. But guess what? If you have never had this experience yet, consider yourself blessed and don't take it for granted. It is likely that the majority of folks will need some help at some point in their lives. I would have loved to put off learning the skill of accepting help until I was 80+, but that was not in my cards. So...I have a support network that is really awesome, starting with Mr. Wonderful, and my daughter, and my mom, and some dear friends who've stepped in when needed, and our Parish here in Alameda where there is a casserole brigade to bring my family dinner when I'm down for the count. And I will ask them all for help when I need it, for sure. Anyway, back to the point of this paragraph (the prompt did say to just free-write for 15-20 minutes...but I've gone over now): writing about my health and sharing through this blog gives the people who want to know more the option of reading more about how I'm doing, what's up with me lately, what experiments am I trying, and what do I think and feel. As the blog and my experience writing evolve, I hope that I can be a resource to help others. That isn't why I started, but it is where I would love to end up.
Wednesday, April 4, 2012
Tuesday, April 3, 2012
Beam me up, Scotty
Writing prompt for today in the Health Activist Writer's Challenge (aka HAWC) - If you had a superpower - what would it be?
Well, I had to think about this quite a bit before the obvious choice for me, if I had the choice, would be teleportation. Think of it! Every workday I'd have at least an extra hour of time, not wasted on a commute. Meeting in Basel this week? Nutley, NJ? No problem. I'd just beam myself to the coordinates and be there in a flash. No travel fatigue. No germ ridden airplane air. I guess I'd still get jet lag due to the time difference, but it would have to be called something else. Like time difference lag. Okay, I suppose that "time difference lag" does not have the same cache, but I would surely come up with something catchy if I could have mad teleportation skills. On the other hand, maybe I would have to keep this superpower more or less to myself - in which case, I won't have to come up with any catch-phrase. As far as my colleagues would be concerned, it would remain regular, garden variety jet lag.
What about the whole concept that I wouldn't need to worry about the location of my next dream job? It wouldn't matter a whit, since I could teleport there for the interview, and for every work day after I landed said dream job. I could meet a friend for lunch in another city, on another continent even. I'd realize my short bucket list of visiting every continent before I die - just need to check the weather conditions in Antarctica before zapping down there, hey.
The only limit I can think of at the moment would be the fact that I would be unlikely to beam my whole family with me for vacations. But if I only had to use the quaint modes of transportation available to non-teleporters once or twice a year, it may be that the experience would still feel as it did when I was younger and didn't need to frequently be two places at once, or at least within 10 minutes between places. The actual experience of travel would still seem fun - even driving along in a car from place to place might still feel entertaining. Every new hotel (no matter how dive-y) is an adventure when you have someone to share it with. Plus I'd be with my family - the people I'm usually thinking about when lamenting time ill-spent with the process of getting my body from one place to another.
Anyway, just as I started to write this post, it occurred to me that the prompt might have a different meaning altogether. You could read it as what superpower you would be most likely to have, if you had a superpower.
Probably something esoteric and largely useless is what I imagine. Because superpowers are endowed to even fictional characters in a mostly random and unintended manner. Then they become the basis to form either a super-hero or a super-villain based on either the character's moral compass or because of some human drive like guilt or vengeance or justice. And as a person who values justice a great deal, I have to think and admit to myself that justice isn't always based on "morality" exactly. Neither is guilt quite often, although this is one of the most confusing aspects of humanity that I can think of. But that's sort of a tangent and it is pretty late in the evening to draw out a long tangent and then wind my way back to the point. {Although, as a latecomer to the world of comic book characters, I realize this is probably already quite evident to any fans of these clever stories and characters.) So to the point - what is my best guess at my likely superpower?
The ability to find a parking spot within a 30 second walk from my destination. Because I already have pretty good parking karma since the last dozen years or so, so it isn't that much of a stretch really. But a superpower leaves nothing to karma or chance, so this would solidify an already existing tendency, or "fortune" if you want to call it that.
And it is the one superpower that would be totally useless if I could have my hearts desire - the ability to beam myself to anywhere at all that I want (or need) to go. Bummer, dude.
Well, I had to think about this quite a bit before the obvious choice for me, if I had the choice, would be teleportation. Think of it! Every workday I'd have at least an extra hour of time, not wasted on a commute. Meeting in Basel this week? Nutley, NJ? No problem. I'd just beam myself to the coordinates and be there in a flash. No travel fatigue. No germ ridden airplane air. I guess I'd still get jet lag due to the time difference, but it would have to be called something else. Like time difference lag. Okay, I suppose that "time difference lag" does not have the same cache, but I would surely come up with something catchy if I could have mad teleportation skills. On the other hand, maybe I would have to keep this superpower more or less to myself - in which case, I won't have to come up with any catch-phrase. As far as my colleagues would be concerned, it would remain regular, garden variety jet lag.
What about the whole concept that I wouldn't need to worry about the location of my next dream job? It wouldn't matter a whit, since I could teleport there for the interview, and for every work day after I landed said dream job. I could meet a friend for lunch in another city, on another continent even. I'd realize my short bucket list of visiting every continent before I die - just need to check the weather conditions in Antarctica before zapping down there, hey.
The only limit I can think of at the moment would be the fact that I would be unlikely to beam my whole family with me for vacations. But if I only had to use the quaint modes of transportation available to non-teleporters once or twice a year, it may be that the experience would still feel as it did when I was younger and didn't need to frequently be two places at once, or at least within 10 minutes between places. The actual experience of travel would still seem fun - even driving along in a car from place to place might still feel entertaining. Every new hotel (no matter how dive-y) is an adventure when you have someone to share it with. Plus I'd be with my family - the people I'm usually thinking about when lamenting time ill-spent with the process of getting my body from one place to another.
Anyway, just as I started to write this post, it occurred to me that the prompt might have a different meaning altogether. You could read it as what superpower you would be most likely to have, if you had a superpower.
Probably something esoteric and largely useless is what I imagine. Because superpowers are endowed to even fictional characters in a mostly random and unintended manner. Then they become the basis to form either a super-hero or a super-villain based on either the character's moral compass or because of some human drive like guilt or vengeance or justice. And as a person who values justice a great deal, I have to think and admit to myself that justice isn't always based on "morality" exactly. Neither is guilt quite often, although this is one of the most confusing aspects of humanity that I can think of. But that's sort of a tangent and it is pretty late in the evening to draw out a long tangent and then wind my way back to the point. {Although, as a latecomer to the world of comic book characters, I realize this is probably already quite evident to any fans of these clever stories and characters.) So to the point - what is my best guess at my likely superpower?
The ability to find a parking spot within a 30 second walk from my destination. Because I already have pretty good parking karma since the last dozen years or so, so it isn't that much of a stretch really. But a superpower leaves nothing to karma or chance, so this would solidify an already existing tendency, or "fortune" if you want to call it that.
And it is the one superpower that would be totally useless if I could have my hearts desire - the ability to beam myself to anywhere at all that I want (or need) to go. Bummer, dude.
Monday, April 2, 2012
Quotation Inspiration
“Strength does not come from physical capacity. It comes from an indomitable will. "
-Mahatma Ghandi
Day 2 of the Health Activist Writer's Challenge writing prompt is to take a quotation that inspires you (positively or negatively) and write about it for 15 minutes...presumably focused on something to do with health - though not explicitly stated in the prompt.
Here's my quote again:
“Strength does not come from physical capacity. It comes from an indomitable will."
I've written before about force of will and what a dominant role that it plays in my approach to my health and to life in general. When I think positively about this facet of my personality, it makes me feel very proud and grateful. I've been able to achieve most of my life goals and face many challenging situations, without letting my physical limitations call the shots for me. I don't think I will ever underestimate the strength that comes from an "indomitable will" - not in others or in myself. I know for a fact that your will, your drive, your ability to translate wish or desire into action - these are the things that give you strength.
-Mahatma Ghandi
Day 2 of the Health Activist Writer's Challenge writing prompt is to take a quotation that inspires you (positively or negatively) and write about it for 15 minutes...presumably focused on something to do with health - though not explicitly stated in the prompt.
Here's my quote again:
“Strength does not come from physical capacity. It comes from an indomitable will."
I've written before about force of will and what a dominant role that it plays in my approach to my health and to life in general. When I think positively about this facet of my personality, it makes me feel very proud and grateful. I've been able to achieve most of my life goals and face many challenging situations, without letting my physical limitations call the shots for me. I don't think I will ever underestimate the strength that comes from an "indomitable will" - not in others or in myself. I know for a fact that your will, your drive, your ability to translate wish or desire into action - these are the things that give you strength.
And I won't (or I think I won't) ever take this for granted in myself. There have been times when my will has faltered, or I've been faced with what seems an impossible dilemna, and I've felt completely adrift and powerless. For me, that is the most terrifying feeling. But this illustrates the double edged sword of a willful spirit. If you have a perfectionist or idealist will - no matter how strong you become and how much adversity you face down, there is a risk you will still feel weak.
Our physical limitations often present these barriers to the perfectly indomitable will. Ithink what I don't like about this powerful quote from Ghandi is the suggestion that physical capacity plays no role. Unfortunately, that isn't true. I've told a few friends over the years that I really feel like my body cannot keep up with my drive, my will. I can't will myself to perfect blood sugars. I can't will my hands to soften and uncurl from Dupuytren's, I can't will my stomach to behave properly. And I can't will away my anxiety that undermines my efforts to take the best care of myself possible. At it's worst, an indomitable will can lead you into a vicious cycle of challenging the nature of my physiology with force.
Relying on your force of will can suck you dry of hope for a change - something I realized recently and blogged about previously. For me anyway, it has been helpful to try and learn some grace. To use what physical capacity I have in concert with my will, rather than pitting my "self" - the strong will self - against my body - the weak thing I'm forced to tote around and occupy. Anyone reading this will see the obvious folly, but I tell you that it is very easy to slip into this compartmentalized view of self. My strong voice will constantly belittle my weak self and the self-loathing directed primarily at my body cycles into an argument in my head about how I wouldn't be physically weak if my will were stronger.
If I take that advice to treat oneself as if you were your best friend, this whole situation brings me to tears. How unfair both sides of my argumentative mind are!
HOPE. GRACE. WILL. STRENGTH.
These are the qualities I try to recognize and express gratitude for in my daily life. It's a practice, like yoga or meditation. I love the term "practice", because of the implication that we have to keep at it - it's not something you finish.
peace.
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!
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!
Saturday, March 31, 2012
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!
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!
Saturday, March 17, 2012
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...
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...
Friday, March 9, 2012
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!
After:
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.
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