It's just the way I am. And it isn't my fault.

Diabetes Blog Week continues.
Today's topic: "What They Should Know" - What is one thing you would tell someone that doesn't have diabetes about living with diabetes?

We can write more than one thing, which is good because the one thing I want to convey is really two things:
Diabetes isn't as bad as you think, but it's also probably harder than you think.  
Otherwise entitled "What you don't know about diabetics could fill a book..."
When I was first diagnosed 32 years ago, diabetes management was harder than it is now because we didn't have glucose monitoring, or insulin pumps, or carb counting.  I wasn't good at eating the same thing at the same time in the same portions everyday. I had different exercise and activities day to day at different times. I had either yucky glucose gel or yucky chalk tablets that were in blister packs and disintegrated in a backpack.  I had to explain to coaches and teachers about my diabetes regularly, and I didn't like the extra "attention" that diabetes brought down on my head.  I was an adolescent, which is hard anyway - so you can imagine that testing my urine (and then later my blood) and being careful about food choices was challenging, and that I rebelliously refused to acknowledge the reality of diabetes.  I just plain didn't like it or want to talk about it with people.

I still hate that people assume they know what I can and can not eat - it drives me crazy.  Or now as an adult, many people assume I can't even have a glass of wine. And they judge you when you consume something they are so sure you shouldn't.  (They really do - don't deny it. Don't we all judge others for one reason or another?)
Well guess what?  I have the same choices as every. body. else.  And like everybody else, I have to deal with the consequences of my choices. For example, if I overeat, I can take more insulin to keep my blood sugar in target range - but if I do this often I gain weight, just like everybody else. It's gotten easier over time to try and be more "boring" with food choices because it is just simpler.  So I often will forego a piece of birthday cake at work because it's just more hassle than it's worth with extra insulin bolus and testing. Not worth it sometimes for even a pretty decent Costco birthday cake (they really do have tasty cakes, FYI).  But if it is some special treat, like gelato in Venice, I will definitely make the effort.  Having a pump and carb counting have gradually freed me from the confines that I didn't "comply" with in my younger years. I have much more freedom and my choices can be better managed now.  Achieving HbA1C lower than 7 is still quite an effort for me personally because I'm just not a very perfect diabetic. I have a busy full life, which causes stress and sometimes puts diabetes management second or third in a queue of demands. I travel frequently for work, and routines are impossible to maintain on business trips. I respond too well to insulin sometimes, and my digestive inconsistencies muck up the rate that sugar hits my blood from my belly.  I am "brittle" - a term I used to loathe because I felt like it was some sort of moral or personal failing to be a brittle diabetic.

It's just the way I am. And it isn't my fault.  

(this is my  basic current set-up. I also find it irritating (literally) to have these gadgets attached to me 24 /7. I do usually hide my pump in my boobage somewhere though) A=pump B= tubing and infusion set, C= CGM sensor, D=CGM transmitter. They talk to each other, and my meter also talks to the pump to calibrate the continuous glucose monitor (CGM))

On the flip-side, diabetes management was also easier in a way in early 1980 because there weren't very many tools to use - so management wasn't a second full-time job the way it sometimes feels now. I had all these emotions about it all the time to compensate for the lack of control - fear, anger ( a lot of anger), frustration. But the mechanics of diabetes were pretty basic - take these 2 shots of insulin at these times every day, pee in a cup and test your urine 4 times a day and record the result in a 3-ring binder, . And here is your exchange diet plan and list of foods.

No sweets, set number of bread/starch exchanges, protein exchanges, etc.  "Free foods" were a big deal and they were as follows: 1) sugar free jello, 2) beef or chicken broth, and 3) diet soda (Tab or Fresca only). My folks weren't big on us drinking soda so I didn't have that a lot. I think they started buying it more to be nice to me - but it didn't taste like much of a "treat" with the saccharine aftertaste anyway.  Cookies? You may have vanilla wafers, graham crackers, or gingersnaps and only 2 (maybe it was 4 vanilla wafers...) for a starch exchange.

Simple as it was, I much prefer the complicated management routine I have today. I like to bake cookies and pie for my friends and family, I like my complicated mom-scientist-traveler-athletic-craftsy-stressful life. No, correction please. I love my life. I am blessed and lucky.

The hardest thing about diabetes and having other autoimmune issues for me gets harder as I grow older.  The impact that my health has on everyone around me mainly. I struggle with depression (common in diabetics and little wonder IMHO), low blood sugar is disorienting for me and that scares people who see me as a strong, competent, decisive person suddenly unable to make a decision.  More and more as I grow older, friends and family know of people with diabetes who've suffered amputations, heart attacks, painful neuropathies, laser eye surgeries. Painful complications and/or death before it seemed like the right time.  Our D-lifespans are statistically shorter than "normal" people. I know for a fact that the people who love me and care about me worry about me, and that makes me unspeakably sad. I want people to be happier when they know me and think of me.  I want them to smile at my silliness, or idiosyncrasies, or just because they like being around me - not worried sick that my kidneys will fail, my stomach freak-outs will land me in a bad place (not all diabetes related, but gastroparesis is a big factor), or that a low blood sugar will send me into another bad place.  I've never passed out, or convulsed due to low bG - but I am way disoriented and blabbering when it happens. and pale and sweaty.  I'm sure it is almost as scary to see as it is to experience.

Despite all this, I want people to know that it is in fact much scarier for me - the one who can't think straight and is totally dependent on getting my glucose in and the people I might need to assist. The one who has to get constant check-ups and wonder every time if this is the time I'll have to take another drug, or get eye laser surgery, or start dialysis, or on and on and on.  Please don't get mad at me. I'm not doing this on purpose. I'm not a careless person who doesn't take care of herself.

It's just the way I am. And it isn't my fault.


I could probably fill a book with more on this topic, but I don't really want to.  I like dealing with diabetes with a sense of humor and living my life in the fullest way possible despite having diabetes.  And that's probably a better book.
But I need to give it more thought...

*Blue was negative for spilled sugar (over your renal threshold which varies from person to person), and there was a scale of color through the greens and yellows up to orange which was something like +5 high sugar.  I very seldom hit the blue after my first year (a "honeymoon" period where my body still made a little insulin).

One Thing to Improve...move along

One thing? I have to choose one thing to improve? one thing.
right,

Diabetes Blog Week day 3 - On Thing to Improve - "Yesterday we gave ourselves and our loved ones a big pat on the back for one thing we are great at. Today let's look at the flipside. We probably all have one thing we could try to do better. Why not make today the day we start working on it. No judgments, no scolding, just sharing one small thing we can improve so the DOC can cheer us on!"

And all my loved ones and friends who aren't diabetic, you can still be part of the DOC (Diabetes Online Community) via me - cheer me on, dammit! And you can be in our cool D-club. (sorry to be a smart-ass, but picking just one of the myriad things I'd like to improve is really difficult).

What I really really need to improve is making time for exercise. I used to be really good at this, carving time out of lunch hours, quick after-work jogs, even early morning jogs or yoga.  I used to really include exercise as just a part of my life that was a given.  Somewhere in the past few years, we had a second child, and my job responsibilities and travel went up. And "poof!" like mysterious magic I found myself plumper, lumpier, and with more volatile blood sugars.

Boo.

Lately, I have started going to a yoga class once per week (when I'm in town). I have the option of 2 other exercise classes per week (went I'm at the office) on Mondays and Fridays too. but I haven't really committed.  And the expensive gym membership that has bee under-used for over a year now? yeah. like I said...underused.

So what should I choose? Obviously exercise is on my brain so I think something physical.  What gives me the most well-being feeling for the buck? yoga. What gives me the most feeling that I've created a few muscle fibers? A good strength/weights workout. What gives me the feeling I'm breathing hard and will be burning calories and bG for another couple of hours? Something really aerobic like running (meh.), eliptical trainer (eh), or Zumba! (okay, fun). Walking will count for me in a pinch, like when I'm traveling - if I can get an hour or two of "casual" walking, relatively brisk, around a city, I'll let myself off the exercise hook.  Otherwise, my goal is to exercise at least something like that or a yoga session (not always vigorous or aerobic), but preferably with 2 resistance workouts, and 2 high intensity aerobic workouts minimum per week.  The most recent studies say that women my age need to exercise moderately to vigorously for 60 minutes every single day to maintain our muscle mass.  I don't think I can commit to that right now, but 20-30 minutes minimum on the days I can't find any time would be an achievement at this point.

Let's see... My schedule could look like this:

Sunday - Gym for strength and/or aerobic workout depending on week plan, or Yoga session
Monday - bootcamp like class at work (or you'd better pick a suitable alternative, wimp!)
Tuesday - minimum 30 minutes run/walk (gotta start again somewhere
Wednesday - Yoga class
Thursday - gym for some resistance/ weights
Friday - bootcamp like class at work (or you'd better pick a suitable alternative, wimp!)
Saturday - Zumba! with Wii

Well, it's Wednesday night here in Basel Switzerland, and I can tell you that I did Zumba and Yoga last week, Sunday, Monday, Tuesday, Wednesday - each day I did some city walking (30-60 minutes), so I'm letting myself off the hook. But I should have squished in a gym visit in the morning (oh, well it's already 2:30 in the morning now!). No. I'm not going to do that because sleep is something I also need.

I will do something tomorrow, preferably yoga or somatics, then Friday I can go to the gym and/or do Zumba.

On the weekends, we are full of excuses because the whole family life thing is pretty full without a need for padding with exercise. But that is of course the completely wrong way to look at it.  Today I realized we haven't done any family bike riding for awhile. Maybe it's time to bring those to the outdor parking spot for the summer!

(move along)

HAWMC 2012 Wrap-up

I'm a day late with my wrap up post, but still want to write at least a brief one...

Prompt: Recap HAWMC. You did it! 30 posts in 30 days. Which was your favorite prompt? Which was the most difficult? Which ideas will you reuse? Who was your favorite fellow blogger?

Writing a post every day was a real challenge for me - especially with business travel and Spring Break thrown in the mix.  I don't think I would have had as much fun without the writing prompts, for sure.  The ones that elicited the most personal response were the ones that got comments and a little more traffic. Especially the "Letter to your 16 year old self" and the "Memory in the third person", as a couple of examples.  Some of them gave me a chance to use humor (legit) - I liked that. Like the Pinterest board, the "Stay Calm and Carry On", the "Six Sentence Story".  Actually I was a little sad more people didn't read my six sentence story - I thought I was being so clever. but maybe not.  I guess the most difficult prompts were the ones I didn't write - like "Writing Style". I don't know what my writing style is or how it's changed. For my health blog, I haven't been writing very long so maybe this will be more clear to me at some point.

Ideas I'll reuse?  Probably the word cloud, and pinning more health related things on Pinterest. The "Letter to 16 year old Self" is not one I'll likely use again on this blog, but maybe at a retreat or workshop. I think this is something everyone can relate to and would learn from.  I'll likely use the "memory in the third person" as a way to indulge in some creative writing - it became so obvious how authors can incorporate their own experiences into stories and this was something I didn't really think about before.  And I loved the 6 sentence story challenge.

Anyway, the last on the prompt list - my favorite fellow blogger. This will sound a little dense, but I hadn't tried very hard to connect with the larger community of health bloggers before HAWMC. I've added several to my Google Reader, like Linda at Leading a Healthy Life, and a bunch of diabetes bloggers like Karen at Bitter Sweet (even though her laptop bonked), smartDpants, and several others including some that were links I found through browsing blogs from HAWMC. I want to make some effort to get involved in this online d-community especially.

What's my next challenge? I'm so fricken goal-oriented. Something I could blog about my experience, the research I'll do, etc. I'm thinking of a 6-week exercise challenge of some sort. Or a challenge to try the super low-carb diet approach (even though I'm pretty sure I don't want to do that forever).  Any ideas or suggestions?

Sometimes the Dragon Wins

The dragon woke late that day - about 11am - and wondered what (meal) the day had in store, as there had been a string of brave knights coming from the village lately to try their hand at slaying her. The dragon snorts as she lumbers slowly toward the cave opening, sending tendrils of smoke that get sucked through the rocks, clearing her nostrils. She is surprised to see today's Knight du Jour - a girl with a long braid running across the shoulder blades of her armor - her sword drawn and her face determined. The dragon considers this situation as she circles the girl, licking the braid with a lash of flame occasionally, but not with intent to roast.  This girl-knight is valiant and quick, dodging and darting in to take swipes at the dragon's front legs and trying to get a stab in at the heart so she can conquer her worst enemy and biggest fears. How hard this courageous girl works at it, but never getting it quite right, and not understanding that trying harder just makes it more difficult - which is a real shame, thinks the dragon, as she opens her mouth and takes the first bite.

Prompt for day 29: Six Sentence Story. In this day of micro-blogging - brevity is a skill worth honing. Can you tell a story and make it short and sweet? What can you say in six sentences?  Check out some (more) here: http://sixsentences.blogspot.com/

healthy pancreas's what?

Okay, it's day 21 and it's still the 21st - so I can catch up with this post if I can get it written!

Today's Prompt: Health Madlib Poem. Fun with parts of speech! Today’s prompt is inspired by the classic game – and poetry – put together. 

The Wego Health blog directs writers to the website Language is a Virus. They have a few fun tools – one of which is a poem generator: http://languageisavirus.com/cgi-bin/madlibs.pl. You enter any words you want and they automatically fill the words into a classic poem.

I guess since this is a health blog, I will use as many relevant words in the madlib and see what we get!

healthy pancreas's healthy pancreas

I run my principles and all the bone turns foot; 
I punish my bananas and all is feel again. 
(I touch I hurt you up inside my chair.) 

The tapes go smileing out in diabetic and tired, 
And stiff cookie waves in: 
I mend my heart and all the hand jumps stomach. 

I takeed that you helped me into head 
And sleep me sugary, whineed me quite happy. 
(I touch I hurt you up inside my chair.) 

spoon tracks from the book, website's blisters eat: 
sweep glucose and insulin's pump: 
I mend my heart and all the hand jumps stomach. 

I peeked you'd climb the way you play, 
But I munch miserable and I drink your monitor. 
(I touch I hurt you up inside my chair.) 

I should have attacked a television instead; 
At least when website massages they whip back again. 
I mend my heart and all the hand jumps stomach. 

(I touch I hurt you up inside my chair.) 

- Janet & Sylvia Plath

Okay. Maybe I don't get it.  Let's try again and see what happens.

healthy pancreas's healthy pancreas

I shoot my persons and all the battery falls sound; 
I walk my syringes and all is sleep again. 
(I gulp I climb you up inside my kidney.) 

The eyes go slideing out in diabetic and sugary, 
And tense friend fails in: 
I close my mouth and all the lancet runs pump. 

I helped that you prayed me into vial 
And eat me sweet, pumped me quite painful. 
(I gulp I climb you up inside my kidney.) 

carbohydrate swallows from the gram, pill's backs prick: 
bleed side and needle's strip: 
I close my mouth and all the lancet runs pump. 

I bended you'd twist the way you shout, 
But I meet stiff and I make your meter. 
(I gulp I climb you up inside my kidney.) 

I should have done a bottle instead; 
At least when medicine plunges they jump back again. 
I close my mouth and all the lancet runs pump. 

(I gulp I climb you up inside my kidney.) 

- Janet & Sylvia Plath

Nope, still not loving it. Although I like "I gulp I climb you up inside my kidney" better thatn "I touch I hurt you up inside my chair".

Here's Sylvia Plath's original poem:

Mad Girl's Love Song by Sylvia Plath

"I shut my eyes and all the world drops dead; 
I lift my lids and all is born again. 
(I think I made you up inside my head.) 

The stars go waltzing out in blue and red, 
And arbitrary blackness gallops in: 
I shut my eyes and all the world drops dead. 

I dreamed that you bewitched me into bed 
And sung me moon-struck, kissed me quite insane. 
(I think I made you up inside my head.) 

God topples from the sky, hell's fires fade: 
Exit seraphim and Satan's men: 
I shut my eyes and all the world drops dead. 

I fancied you'd return the way you said, 
But I grow old and I forget your name. 
(I think I made you up inside my head.) 

I should have loved a thunderbird instead; 
At least when spring comes they roar back again. 
I shut my eyes and all the world drops dead. 
(I think I made you up inside my head.)" 

- Sylvia Plath

swimming upstream of consciousness

Prompt #12 for HAWMC - write stream of conciousness for 15 minutes (I'm setting a timer!). Start with the phrase "Today I looked in the mirror and..."

Today I looked in the mirror and realized that it was already 10:15am. Our sump pump fried itself, and it's been rainy and may rain some more, so we had to do something about it like, pronto! But  my husband (aka Mr. Wonderful) pretty much took care of it for us - I didn't really have to do anything. I'd found the old pump running last night (well, technically it was early in the morning) and decided I'd better wake Mr. Wonderful up since I wasn't sure what to do besides unplug it. The sump well was pretty much full.

Anyway, we agreed to find a new one in the morning and replace it and went (back) to sleep.  However, this morning I woke up with a splitting headache brought on by not enough sleep, hormonal state, low overnight bG, weather pressure changes, a mild head cold, and a shot of pepper vodka at midnite (dumb idea btw, but insomnia messes with your judgement, you know?) Two Excedrin later I decided I'd work from home for the morning in case Mr. Wonderful needed any help or anything.  I dialed into my teleconference at 8am with some coffee and high-grain cereal, and mostly just listened in. Interesting topics, but not projects I'm directly involved in - more that I need to learn the process for this particular team so I understand what to contribute when it is my turn.  Then I did some actual work preparing for a conference I'm attending next week and answering a few emails. Then at 10 I realized that I was still in my bathrobe and that I had a real live meeting to get to at the office by 11:30.

The mirror. Some days the mirror is not my friend and I notice every little bulge, age spot, and saggy piece of skin imaginable. Most days I am much more objective and my goal is to take the middle aged face and body I see there and dress it with style and apply products that will moisten, firm, camoflage, and enhance my skin and hair.  This process takes about 30 minutes, which I think is not bad. Today was pretty objective. I really didn't have time to obsess. This is a good thing.

I changed my clothes almost completely after the first try, and felt smug with my final choices. I did look stylish in my humble opinion. But only from the neck down. After hair and face, I got an inspired idea for my neck which was still bare. I have this cool buffalo nickel necklace that I never wear. For some reason it is on the uber-long chain that doesn't really work with many outfits I wear - but today I threaded the chain through twice and then did this crazy loosen-tighten-loosen-tighten dance with it to actually get it around my neck and clasped.  Then I took a final look and I smiled at myself. "good job self" I did not say out loud. 

As I walked out of the bathroom I realized that 5 hours earlier I'd had a splitting headache and I couldn't believe how bright and optimistic I felt.  Actually, I felt really happy. I had that sense of physical well-being that I wish I could capture and summon up as my majority state rather than the minority state. Mr. Wonderful successfully swapped out our sump pump, so my crafty space and our laundry room won't get flooded (God willing). My bGs have been brilliant in the past 48 hours (probably a function of the hormone fluctuation back downward but I will take it).  I have some interesting things to do at work today, and the sun was shining after the clouds of the early morning broke up. 

I love Excedrin.

(ding! time's up!  I'm going to publish this without any editing so forgive any boo-boos please...)

Dear Self at 16

(HAWMC writing prompt for today)

photo of self at about 16 - courtesy of Andy VanDyke

Dear Self at 16,

As I think about where you are in your life right now, I'm overwhelmed with emotion.  I know that you are in the midst of all sorts of changes and decisions - parents divorcing, colleges sending you colorful brochures, friends, drugs, sex.  I want to write something kind and wise that will make you feel lighter. You are so funny and your smile is so bright. And you are beautiful. And smart. And strong. And sad.

I'd like to be able to list out all the places "we" made a wrong turn in the 30 years that have elapsed in this time space continuum (hehe - continuum doesn't look like a real word, does it?).  However, there are so many things for you to look forward to, and your life at age 46 will be rich and filled with people and experiences that "we" may not have if I were truly tell you things that could alter your course.

So there you go. You will make a lot of mistakes. And my advice to you? Get over it!  I don't know if you already have the habit of internalizing everything - to be honest, I can't remember - but I suspect you've started by now. I do know that you already spend a lot of time feeling guilty and obsessing about things that you cannot change.  Please try to treat yourself like your own best friend rather than your harshest critic. Please give up on the notion that you should be able to fix everything if only you had more discipline and were paying attention and taking action. Not only can you not fix everything - it isn't your job to fix everything!  Every person in your life is responsible for their own fixing, just like you.

I know you've already had diabetes for two years, and you feel like a terrible person for not being in control of this disease.  You should trust Dr. Hohl more - he is a really compassionate person, and he knows that you are making up your glucose numbers in that log book, and he knows that you are a perfectionist (which you will NOT know for a very long time, btw)(oh, btw means by the way - for reasons I will not get into here, people use a lot of acronyms in the future).  High blood sugar does not equate to a moral deficiency. Hypoglycemia not your fault either. Your pancreas quit working and that is not your fault.  The really good news is that this will get ever so much easier for you. Remember just 2 years ago when you were diagnosed and the only way to monitor how you were doing each day was to test your urine? Sheesh.

Now, 30 years in your future, I've got a continuous glucose monitor giving me a bG data point every 10 minutes that talks to an insulin pump I wear with an infusion set. I don't have to eat the same thing every day at the same time. I can sleep in (well, in theory if I didn't have kids of my own and a job!) I don't have to exercise the same time with the same intensity every day or try to predict the future 4-12 hours at a time because I can adjust my pump to give me different amounts of insulin whenever I want to.  This system works so much better for you - you will see.

I know that you also still wear a brace at night for scoliosis, and you still have braces on your teeth. And that you joke around about being a genetic mutant.  Your sense of humor will serve you well over the years!  The bad news is that you are going to really need it because you haven't seen the last of medical challenges and physical limitations. And I want you to know that it is perfectly okay to be pissed off about this from time to time!  The good news is that throughout the years you will find yourself surrounded by people who care about you and would love to help and support you if only you would ask. So go ahead and ask once in awhile. Oh, but do try to ignore the judgemental assholes out there. You won't be around as many of those 30 years from now (or maybe you'll just get really good at ignoring them - either way works for me).

I'm sure you have a lot of questions - I too have questions about what will happen in the next 30 years! I'll just end with this: Your love of music and games, your goal oriented work ethic, your analytical tendencies, your tenacity, your humor, and the fact that you are tall - all of these things and much more of what you've got going for you - mean that you will be able to achieve the things you barely dare to dream of today. Like traveling all over the world. And having children. And love. And you may in fact be a genetic mutant! We know so much more about the genetics of diseases these days. But you will never be alone in that.

With much love from your closest friend and admirer,
You at 46

Haiku to your health

Today's writing prompt: Write a Haiku poem (or several) around your health focus.

#1

disconnect a tube

button push beep whirring sound

unexpected pain

#2

five seconds waiting

data now without judgement

use number wisely

#3

survey the landscape

bad choices never ending

neutralize acid

#4

bend twist pull push shout

running against gusts of wind

sweat out of breath win

#5

palms flat on the floor

push hard against the tight bands

breathe into fingers

#6

what should be done first

endless list of gravity

deep breath and then jump

#7

building building up

waves overcome the body

explosion recede

Ekphrasis

Ekphrasis: a literary description of or commentary on a visual work of art

Blossom expectation by Vangelis Bagiatis

The HAWMC prompt for today was to go to flickr.com/explore - I haven't ever done that, or clicked on the "explore" tab in flickr despite having used it for quite awhile now.  Then write a post inspired by the image.  This is a beautiful image - I'd recommend following the link above to see more of this photographer's work on her Flickr site*.


For me, this photo evokes a feeling of both excited anticipation, and a fear of disappointment. Since there is no color to bring out the potential life in what I imagine to be a striking color green for the new shoots and buds, the "Blossom expectation" takes a small of leap of faith.  How do we know these are live little plants with the potential to burst open and spread glorious color across the landscape?  The buds are nice and fat, and you can see how sleek they look in the black and white contrast photography. I want to see what will happen next. I want the next frame to blow me away with an explosion of those fat little buds. And my optimistic expectation includes color. So I'm pulled back into the tension of the image in black and white where I'm reminded that not every bud results in a blossom.


The angle of the photo brings to me memories of tall grasses and various plants and flowers from eye level - as a child growing up in the countryside, I had so many opportunities to lie in the grass and explore the world under our feet and see the sky from that angle.  I don't do that anymore - or at least I don't remember the last time I did. So I feel some nostalgia too when I take in this image.  In reflecting how this photo could relate to my health experiences, this nostalgic feeling hits hard. I didn't have anything wrong with me during those years. Scoliosis and type 1 diabetes hit me in my early teens. I doubt I would have been rolling around in the grass looking at ants and catching grasshoppers in my teens anyway - but memory triggers can appear unexpectedly and anywhere and they don't follow linear paths.




* btw, the prompt says we should post the image - but I've emailed the photographer to double check that it's okay with her. 

Why do I blog about my health?

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.