Boy, it's sure nice to be back, reading thought-provoking blogs that say things just like I feel, only they say it so much better than I do. I've been in Chicago for the last 3 days, having met up with my best friend SJ who I hadn't seen in 14 months and 15 days. We had a jam-packed trip. I went to the Contemporary Museum of Art alone on Wednesday (I will say no more); Wicked the musical Wednesday night (it was awesome); the Shedd Aquarium and Navy Pier Thursday; swimming in Lake Michigain and the Art Institute on Friday. I had envisioned a free-wheeling, fun, girly time -- no worries, no constraints, just fun. And I did have fun...except that I couldn't leave my diabetes at home.
I ran low all day Thursday because of all the walking we were doing. I suspended my pump; I drank maintenance Pepsi and ate so many Hot Tamales that my tongue hurts and I suspect cold sores are immenent. At my lowest I was 46. But then every morning I'd wake up high, and have to decide: do I do an extra bolus? Do I trust the walking to bring it down?
So really, I came home disheartened. And as I write this with a 322 blood sugar and the feeling that my insides are trying to get out of my skin, all the sugar is jumping around so much, I am even more frustrated. Usually I am a stoic diabetic. I have it. I deal with it. I work with the highs and the lows. I don't wish for a cure, usually. But today I wish I could take it off, like the pump, and travel free for a while. See a city without worries. Walk without having to consume 600 extra calories just to keep me going. Lighten the load and leave some of the baggage behind.
Saturday, July 29, 2006
Thursday, July 20, 2006
17 Really Cool Things I've Done Since My Diagnosis (in no particular order):
1. Became an English teacher
2. Married the kindest, cutest man in the universe
3. Was baptised by immersion
4. Became a member of a wonderful church
5. Graduated in 3 years with 2 majors (English and Political Science) and an unofficial minor (History) from a superb liberal arts school where I...
6. ...Became friends with S.J., the most dedicated and faithful friend a girl could have
7. Lived and worked in Washington D.C. for 9 months. Hated it. Learned what I valued.
8. Learned how to knit
9. Went parasailing twice
10. Roadtripped to Rhode Island by myself...there and back in 3 days!
11. Roadtripped to the Grand Canyon and Maine, and went to Europe (all with the above SJ)
12. Got an insulin pump!
13. Was able to honor my brother by speaking at his funeral and sharing what a wonderful relationship we had and what a beautiful young man he was
14. Got much-needed treatment for a prolonged depression
15. Stood up to my sixth grade teacher. She needed it. So did I.
16. Started the process of getting over my fear of failure and my insistence on perfection. Note the knitting, and the golfing (!) I did last week
17. ...I'm looking ahead here, but I'm going to think positive: finished my dissertation!
And because I like setting goals...
Some things I will do in the next 17 years...
1. Become a professor! Hopefully sooner rather than later
2. Learn to speak Spanish fluently
3. Own a home
4. Also own a home...in Spain
5. Do Karaoke
6. Be a mentor to ungraduates and graduate students
7. Honor my brother by starting some sort of program that would reflect who he was and what he valued...the details are fuzzy, but it's something I feel compelled to do
8. Learn to play the guitar
1. Became an English teacher
2. Married the kindest, cutest man in the universe
3. Was baptised by immersion
4. Became a member of a wonderful church
5. Graduated in 3 years with 2 majors (English and Political Science) and an unofficial minor (History) from a superb liberal arts school where I...
6. ...Became friends with S.J., the most dedicated and faithful friend a girl could have
7. Lived and worked in Washington D.C. for 9 months. Hated it. Learned what I valued.
8. Learned how to knit
9. Went parasailing twice
10. Roadtripped to Rhode Island by myself...there and back in 3 days!
11. Roadtripped to the Grand Canyon and Maine, and went to Europe (all with the above SJ)
12. Got an insulin pump!
13. Was able to honor my brother by speaking at his funeral and sharing what a wonderful relationship we had and what a beautiful young man he was
14. Got much-needed treatment for a prolonged depression
15. Stood up to my sixth grade teacher. She needed it. So did I.
16. Started the process of getting over my fear of failure and my insistence on perfection. Note the knitting, and the golfing (!) I did last week
17. ...I'm looking ahead here, but I'm going to think positive: finished my dissertation!
And because I like setting goals...
Some things I will do in the next 17 years...
1. Become a professor! Hopefully sooner rather than later
2. Learn to speak Spanish fluently
3. Own a home
4. Also own a home...in Spain
5. Do Karaoke
6. Be a mentor to ungraduates and graduate students
7. Honor my brother by starting some sort of program that would reflect who he was and what he valued...the details are fuzzy, but it's something I feel compelled to do
8. Learn to play the guitar
Tuesday, July 18, 2006
The Diabetes OC motivates me! When I read that some people do their basal tests by simply not eating, I thought, "that's a good idea." I have always hated those tests and have not done one since shortly after I got the pump. It's not so much that they're inconvenient as that they're another reminder of the inconveniences of having diabetes. (Circular logic, maybe, but then, I got a "C" in logic).
So, I was pumped (hah!). I was going to do this. I was going to (gasp) skip breakfast. Today was my day.
I woke up at 204. Yesterday I was 203. The day before that was 124. So either the heat is doing its thing or I need more on the 2:30 - 5:30 am set. I gave a slight bolus to correct the 204, tell myself that if I woke up high I should skip the test, and then ignore my advice. I've prepped myself for this and I am going to do it. (So rarely do I try to be a "good diabetic").
Then I debate -- do I go for a powerwalk or not? On the "Yes" side: It's my Tuesday form of excercise. I will feel badly if I don't. I'm 204. On the "No" side: I'm 204. I might go low. I'll skewer my results. I go with the "yes," and compromise with the fear of lows by suspending my pump.
I come back at 257. Later I am 255.
I throw in the towel. Eat some chicken bryani. Do what I think is enough insulin. Clock in at 258.
So, for once in my life, I am remarkably consistent. But I haven't learned anything. Are my basals off? (They weren't last week...) Did I screw up with the walk/suspend? Did I miscalculate lunch? Are my consistent highs a result of the weather, hormones, a bug I'm fighting? Who can tell?
So, I was pumped (hah!). I was going to do this. I was going to (gasp) skip breakfast. Today was my day.
I woke up at 204. Yesterday I was 203. The day before that was 124. So either the heat is doing its thing or I need more on the 2:30 - 5:30 am set. I gave a slight bolus to correct the 204, tell myself that if I woke up high I should skip the test, and then ignore my advice. I've prepped myself for this and I am going to do it. (So rarely do I try to be a "good diabetic").
Then I debate -- do I go for a powerwalk or not? On the "Yes" side: It's my Tuesday form of excercise. I will feel badly if I don't. I'm 204. On the "No" side: I'm 204. I might go low. I'll skewer my results. I go with the "yes," and compromise with the fear of lows by suspending my pump.
I come back at 257. Later I am 255.
I throw in the towel. Eat some chicken bryani. Do what I think is enough insulin. Clock in at 258.
So, for once in my life, I am remarkably consistent. But I haven't learned anything. Are my basals off? (They weren't last week...) Did I screw up with the walk/suspend? Did I miscalculate lunch? Are my consistent highs a result of the weather, hormones, a bug I'm fighting? Who can tell?
Saturday, July 15, 2006
Recipes were made to be broken. At least in my book. Substitute here, cut there, make something better....Except that sometimes the recipes know what they're talking about. Which is why I just wasted 2 cups pretzels, 1/2 cup butter, 8 oz. cream cheese, 1 cup whipped topping, and some sugar. Said ingredients are now in a very unappetizing blob in our trash bin, baking in the sun.
See, I was making Strawberry Pretzel Dessert. I love this dessert, and try to eat it, if not make it, every summer. The crust is pretzels and butter and sugar. I decided to cut the butter from 3/4 cup to 1/2 cup. This calculation makes sense; very rarely do we need all the butter in a recipe, just like we don't need all the sugar (which I cut from 3 TBLS to 1). Except, butter adds moisture, and moisture keeps a crust together. So, when I started slathering on the cream cheese mixture, it was very difficult to spread. The crust started coming up like a crumbly carpet. But being the adventerous cook, I decided to see what would happen if I just mixed the pretzels and crea, cheese mixture together. It would still taste good, right? Wrong. The yumminess disappeared to be replaced by the Pretzel Blob. No amount of squishing would make it lie flat. And so, with unceremonious anger and juvenile zeal, I used a spatula to plop the blob into the trash and announced "I'm never making another dessert again." (This is not the first dessert-in-distress I have conconcted).
The butter cutting was ill-advised. But for anyone who decides to make this dessert or has made it in the past, the 1 cup sugar in the cream cheese mixture is more than enough. The whipped topping is really sweet. I think 1/2 cup would suffice (I used 3/4 cup, and the mixture was too sweet). But then, you may not want to take my advice on this dessert.
See, I was making Strawberry Pretzel Dessert. I love this dessert, and try to eat it, if not make it, every summer. The crust is pretzels and butter and sugar. I decided to cut the butter from 3/4 cup to 1/2 cup. This calculation makes sense; very rarely do we need all the butter in a recipe, just like we don't need all the sugar (which I cut from 3 TBLS to 1). Except, butter adds moisture, and moisture keeps a crust together. So, when I started slathering on the cream cheese mixture, it was very difficult to spread. The crust started coming up like a crumbly carpet. But being the adventerous cook, I decided to see what would happen if I just mixed the pretzels and crea, cheese mixture together. It would still taste good, right? Wrong. The yumminess disappeared to be replaced by the Pretzel Blob. No amount of squishing would make it lie flat. And so, with unceremonious anger and juvenile zeal, I used a spatula to plop the blob into the trash and announced "I'm never making another dessert again." (This is not the first dessert-in-distress I have conconcted).
The butter cutting was ill-advised. But for anyone who decides to make this dessert or has made it in the past, the 1 cup sugar in the cream cheese mixture is more than enough. The whipped topping is really sweet. I think 1/2 cup would suffice (I used 3/4 cup, and the mixture was too sweet). But then, you may not want to take my advice on this dessert.
Tuesday, July 11, 2006
This posting is brought to you by the color Gray and the bloodsugar Low.
It is gray, gray, gray out. Pouring rain gray out, although the rain stopped long enough for me to take a very humid walk. A few years ago I was diagnosed with Seasonal Affective Disorder (not so affectionally referred to as Seasonal Defective Disorder), but really, I think I just have an allergy to Gray.
I wasn't motivated yesterday and I certainly am not motivated today. This does not make dissertation writing easy. Nor does the 13th low in 5 days. One day I was only above 100 once. Now, I like good, low-end blood sugars, but perpetual lows are zappers. And although I've cut insulin daily it hasn't done any good.
On a sunnier note, our anniversary get away was beautiful. The Bed and Breakfast was a huge, 150+ year-old farmhouse; the jacuzzi was fair-sized; the champagne was bubbly, and the Nic was happily talkative. I wish we could celebrate our anniversary more often!
It is gray, gray, gray out. Pouring rain gray out, although the rain stopped long enough for me to take a very humid walk. A few years ago I was diagnosed with Seasonal Affective Disorder (not so affectionally referred to as Seasonal Defective Disorder), but really, I think I just have an allergy to Gray.
I wasn't motivated yesterday and I certainly am not motivated today. This does not make dissertation writing easy. Nor does the 13th low in 5 days. One day I was only above 100 once. Now, I like good, low-end blood sugars, but perpetual lows are zappers. And although I've cut insulin daily it hasn't done any good.
On a sunnier note, our anniversary get away was beautiful. The Bed and Breakfast was a huge, 150+ year-old farmhouse; the jacuzzi was fair-sized; the champagne was bubbly, and the Nic was happily talkative. I wish we could celebrate our anniversary more often!
Friday, July 07, 2006
Happy Anniversary to us...
This weekend marks (more or less) our 3rd anniversary. Handsome Hubby and I are celebrating with a trip to a bed and breakfast tomorrow, and a visit to our favorite winery on Sunday. We have visited this winery every annivesary since our marriage. We mosey on down through the "quaint" towns, our cooler packed with Alouette Cheese and strawberries. At the winery, we sit at the tasting counter with our eyes wide, trying to decide: do we taste the same wines? Do we taste different wines and share our opinions? Then the question becomes: which wines do we buy with the money we have set aside?
Having made our purchases and also purchased the requisite bar of french bread, we deliver all but one bottle to our car and grab our cooler. We meander through the winery gardens to the pond, where we debate over the merit of shady v. sunny pincic tables and inevitably compromise on one with shade (for him) as well as sun (for me). Pulling out our real, from-our-house wine glasses, we pop the cork and savor the wine, the cheese, the strawberries, and the sun.
This weekend marks (more or less) our 3rd anniversary. Handsome Hubby and I are celebrating with a trip to a bed and breakfast tomorrow, and a visit to our favorite winery on Sunday. We have visited this winery every annivesary since our marriage. We mosey on down through the "quaint" towns, our cooler packed with Alouette Cheese and strawberries. At the winery, we sit at the tasting counter with our eyes wide, trying to decide: do we taste the same wines? Do we taste different wines and share our opinions? Then the question becomes: which wines do we buy with the money we have set aside?
Having made our purchases and also purchased the requisite bar of french bread, we deliver all but one bottle to our car and grab our cooler. We meander through the winery gardens to the pond, where we debate over the merit of shady v. sunny pincic tables and inevitably compromise on one with shade (for him) as well as sun (for me). Pulling out our real, from-our-house wine glasses, we pop the cork and savor the wine, the cheese, the strawberries, and the sun.
Wednesday, July 05, 2006
The Day: Sunday, July 2.
The Time: 11 am.
The scene: Nic is in the kitchen. Her blood sugar is 61. She is shaking, and hot, and more symtomatic than she has been in a long time. Her heart is racing. She has had some juice, but feels it is imperative that she have a ham and cheese sandwich, now.
But first she needs the cheese slicer. She looks under the sink, where some dishes are stored, and starts rooting through them. She looks in the pile of dirty dishes on the counter. She clangs some silverware and bangs around some plates as she looks, frantically but ineffectually. Tears are streaming down her cheeks.
"I'll do the dishes later," her husband says. He sits placidly on the couch.
She is sobbing as she takes out a plate (as she is unable to find the cutting board either) and grabs a knife and starts to saw at the cheese.
"I don't care about the dishes. I need the cheese slicer and I cant' find it. This is why" (deep, snotty, self-pitying breath) "I don't like us [read: you] to pile the dishes like this. I can't find anything." She glares at self-satisfied husband as he refuses to comfort her in her temper tantrum.
The cheese won't cut, a combination of a very dull knife and an uncordinated Nic. It is all hubby's fault.
She throws the cheese into its drawer and kicks the door shut. Sobs as she grabs a knife and bread and slaps on peanut butter. Glares at her husband the whole time. Wishes he knew what it felt like. Inhales the sandwich, very unhappy that it is not ham and cheese, the only real remedy to this egregious low, and sits back down.
It's funny now, but this was the scariest low I have ever had. I am rarely emotional with lows, and I was a mess with this one. And I was 61, not 30 -- which, incidentally, I don't usualy feel and have thus far (but not holding my breath) been fully capable of dealing with in a rational manner.
The Time: 11 am.
The scene: Nic is in the kitchen. Her blood sugar is 61. She is shaking, and hot, and more symtomatic than she has been in a long time. Her heart is racing. She has had some juice, but feels it is imperative that she have a ham and cheese sandwich, now.
But first she needs the cheese slicer. She looks under the sink, where some dishes are stored, and starts rooting through them. She looks in the pile of dirty dishes on the counter. She clangs some silverware and bangs around some plates as she looks, frantically but ineffectually. Tears are streaming down her cheeks.
"I'll do the dishes later," her husband says. He sits placidly on the couch.
She is sobbing as she takes out a plate (as she is unable to find the cutting board either) and grabs a knife and starts to saw at the cheese.
"I don't care about the dishes. I need the cheese slicer and I cant' find it. This is why" (deep, snotty, self-pitying breath) "I don't like us [read: you] to pile the dishes like this. I can't find anything." She glares at self-satisfied husband as he refuses to comfort her in her temper tantrum.
The cheese won't cut, a combination of a very dull knife and an uncordinated Nic. It is all hubby's fault.
She throws the cheese into its drawer and kicks the door shut. Sobs as she grabs a knife and bread and slaps on peanut butter. Glares at her husband the whole time. Wishes he knew what it felt like. Inhales the sandwich, very unhappy that it is not ham and cheese, the only real remedy to this egregious low, and sits back down.
It's funny now, but this was the scariest low I have ever had. I am rarely emotional with lows, and I was a mess with this one. And I was 61, not 30 -- which, incidentally, I don't usualy feel and have thus far (but not holding my breath) been fully capable of dealing with in a rational manner.
Sunday, July 02, 2006
Today is Sunday, and my husband and I are missing church yet again. Our summer attendance has been spotty because of travels, and also because we work with the early two-year olds. But today we are missing by choice, choosing to miss the crowds of the community picnic and the pomp and circumstance of the patriotic sermon that we know awaits us.
I am not one of those who thinks that to miss a Sunday is sin, or that God will judge me for choosing to sleep in or take a mental health break during a busy week. But today, I am longing for God. I am hungry for his word. And this is because I know I need it.
I am worshipping finances rather than God. Recently a friend met with me to help me with a budget, and the more I work on finalizing it the more I worry about where our money will come from. Summers are always tight. There are weddings, there is our anniversary, there are unforseen expenses. There is the Handsome Hubby's car, which in the past three months has cost us $2,5000. We picked it up from the shop yesterday, only to have the clutch break 10 miles later. And so I look at our money draining away, away, away...and I forget to look to God to provide. And he always has provided, from the beginning. We were fairly impovershed when we married, but thanks to wedding gifts we were able to repair Handsome Hubby's car, get new glasses for both of us, buy needed clothes, and to sock some away in savings. Money has come from odd, unforseen places ever since. And yet I always worry...
And then there is the matter of insurance. My hubby is a dreamer; I am a pragmatist, partly by nature, partly by diabetes, and partly because the dreamer needs balance. And so, when he thinks of looking for a new job, I say, "but what about our insurance?" We have marvelous insurance, which insures that we pay very little for my pump supplies. What if? What if? What if? And so, in the name of financial security, I am the dour dream-shooter-downer. I do not like myself for this.
And I do not like that I am worshipping finances and financial stability over God. After all, what else is stable in this unstable world?
I am not one of those who thinks that to miss a Sunday is sin, or that God will judge me for choosing to sleep in or take a mental health break during a busy week. But today, I am longing for God. I am hungry for his word. And this is because I know I need it.
I am worshipping finances rather than God. Recently a friend met with me to help me with a budget, and the more I work on finalizing it the more I worry about where our money will come from. Summers are always tight. There are weddings, there is our anniversary, there are unforseen expenses. There is the Handsome Hubby's car, which in the past three months has cost us $2,5000. We picked it up from the shop yesterday, only to have the clutch break 10 miles later. And so I look at our money draining away, away, away...and I forget to look to God to provide. And he always has provided, from the beginning. We were fairly impovershed when we married, but thanks to wedding gifts we were able to repair Handsome Hubby's car, get new glasses for both of us, buy needed clothes, and to sock some away in savings. Money has come from odd, unforseen places ever since. And yet I always worry...
And then there is the matter of insurance. My hubby is a dreamer; I am a pragmatist, partly by nature, partly by diabetes, and partly because the dreamer needs balance. And so, when he thinks of looking for a new job, I say, "but what about our insurance?" We have marvelous insurance, which insures that we pay very little for my pump supplies. What if? What if? What if? And so, in the name of financial security, I am the dour dream-shooter-downer. I do not like myself for this.
And I do not like that I am worshipping finances and financial stability over God. After all, what else is stable in this unstable world?
Thursday, June 29, 2006
Blood sugars are better, thank God!
I notice that I don't post much when I have good blood sugars. Hmmmm. I do have to note, though, that my eye is really bugging me since my blitz of highs. Like there's cellophane over it, and like it won't tear properly. I know there's nothing really wrong with it, but I worry any way.
I've been going to write some real posts, about teaching evals (grrrrrr) and boggling articles in The Chronicle of Higher Education ("Jesus is not a Republican") but instead I have: watched Napolean Dynamite with rockin people; done my Bible study; fought with the microfilm machine; helped a friend with a resume and gotten budgeting help from a friend; thought about writing; and actually written a bit. So nothing "real" here...maybe next time.
I notice that I don't post much when I have good blood sugars. Hmmmm. I do have to note, though, that my eye is really bugging me since my blitz of highs. Like there's cellophane over it, and like it won't tear properly. I know there's nothing really wrong with it, but I worry any way.
I've been going to write some real posts, about teaching evals (grrrrrr) and boggling articles in The Chronicle of Higher Education ("Jesus is not a Republican") but instead I have: watched Napolean Dynamite with rockin people; done my Bible study; fought with the microfilm machine; helped a friend with a resume and gotten budgeting help from a friend; thought about writing; and actually written a bit. So nothing "real" here...maybe next time.
Monday, June 26, 2006
Believe it or not, you are looking at a blog that has been fine-tuned today. Deciding that the gothic and sentimental could not hold my attention amidst the waves of high-blood sugar ickiness (culminating at a 421 -- changed pump, again, and this time the canula had a visible problem), I decided to spend time making my blog look pretty. Clearly, it's not there yet, since my template tells me it's lavendar and it at times even acts lavendar (just not consistently). But, please note, I did get blogrolling to work. I have not tested the links, yet, but I consider this a start of something good.
Hoping to continue fine-tuning the blog soon. But not if it means that high blood sugars are my motivation!
Hoping to continue fine-tuning the blog soon. But not if it means that high blood sugars are my motivation!
What's wrong with this picture?
9:40 am 214
11:55 pm 214
1:15 pm 83
3:30 pm 170
4:40 pm 214 (change out pump; no room-temp insulin, soooo...)
5:30 pm 313
6:00 pm 404 (change out pump, again)
7:25 pm 109
9:30 pm 124
11:30 pm 76 (this after glass of sugary soda and very sugary homemade icecream)
Sunday, June 25
8:55 am 80
10:30 am 220
12:50 pm 525 (perhaps vastly miscalculated breakfast?????)
2:00 pm 363
3:50 pm 289 (love to see the steady fall, but could it go a little faster? I'm not scrimping on
insulin, either)
5:50 pm 199
8:20 pm 131
9:35 pm 78
10:45 pm 211
7:50 am 290
8:30 am 322 (change pump, again)
9:40 am 214
11:55 pm 214
1:15 pm 83
3:30 pm 170
4:40 pm 214 (change out pump; no room-temp insulin, soooo...)
5:30 pm 313
6:00 pm 404 (change out pump, again)
7:25 pm 109
9:30 pm 124
11:30 pm 76 (this after glass of sugary soda and very sugary homemade icecream)
Sunday, June 25
8:55 am 80
10:30 am 220
12:50 pm 525 (perhaps vastly miscalculated breakfast?????)
2:00 pm 363
3:50 pm 289 (love to see the steady fall, but could it go a little faster? I'm not scrimping on
insulin, either)
5:50 pm 199
8:20 pm 131
9:35 pm 78
10:45 pm 211
7:50 am 290
8:30 am 322 (change pump, again)
Thursday, June 22, 2006
"I used to wish I could be in a healthy body for just one day, just to know what it feels like," she tells me. She is sitting crosslegged on the coffee shop couch, looking, in fact, healthy.
She is one of the most intelligent people I know. Her convictions are strong. She lives and speaks according to what she believes. She loves coffee, knitting, Emily Dickenson, a certain young doctor, her cat. She is passionate and courageous, although courageous may not be a word she wants employed to describe her. It is to close to "brave" -- as in "you're so brave," which she hears too often. It seems, she says, to work toward defining her according to her chronic illness(es).
She was diagnosed with cancer at age 3 months. She has numerous health-related complications. But it is not the anemia, the fatigue, the vertigo, the allergies, that are the most disturbing, the most complicating factors of her life. It is the day-to-day web of emotions and relationships as people are ignorant, unsypathetic, harsh, unforgiving of the limitations the impede her body. Because they can't see them, they assume that they do not exist.
This is driven home as she begins a class on issues of access to education and other basic services and human needs. Much of this class focuses on the American with Disabilities Act, with fabulous readings such as Susan Wendell's "Toward a Feminist Theory of Disability" excerpted from (I believe) her The Rejected Body. Yet when my friend asks for permission to write her papers before the course begins, in expectation of those unsuspected moments when her body simply will not comply with her will, her instructor tells her that he does not feel comfortable letting her do so. He instructs her to get permission from the Dean, implying that she is seeking special treatment rather than the rights granted her by the ADA.
And then there is my mom, who today is celebrating her 29th birthday for the 27th time. How often, with her 15 years of Chronic Fatigue, has she heard "You look so healthy!" as people ask about her health and assume that if she is out in public she must be "cured." They do not know how she has rested a full day or week to make it to an event, how she has worked on her appearance.
My mom is adventurous. She is funny and she is fun. She is strong. She is curious. She wants to know about Seneca, about the Civil War, about herbs, about most things. She likes ideas. She writes to senators. She is a reader. She is a believer in Christ and has one of the quietest, strongest faiths that I know. She is a prayer warrior. She is a thinker and she is real.
Yet 15 years ago the doctors at Mayo Clinic told her, as they have told numerous others, that she was crazy -- that the scratchy throat, the inability to speak, the inability to stand without dizziness, the constant, chronic, painful, debilitating fatigue -- was all in her head.
And over 25 years since Chronic Fatigue Syndrome first made its appearance, the Center for Disease Control only last month concurred that, indeed, Chronic Fatigue Syndrome is a real disease. Yet even so, people will continue to say, "But you look so healthy," oblivious to the fact that she is leaning her head on her hands and that her eyes are crying "let me go so I may rest." And they will continue to think that "Chronic Fatigue" means that she is a late sleeper, too lazy to get out of bed in the morning. or that she is exaggerating because, boy, they're "tired" too.
This post is in honor of my mom's birthday and my friend. Thank you, you two, for continuing to fight and live and be yourselves, and to define yourselves according to who you are, and not what others -- and your conditions -- attempt to define you.
__________________________________________
Some "invisible illness" websites:
CFIDS Association of America
National Fibromyalgia Association
Celiac Sprue Association
National Digestive Diseases Information Clearinghouse
Crohn's and Colitis Foundation of America
Some real-life stories:
"What Price Glory?"
An interview between Anna Simpkins and Seabiscuit author Laura Hildenbrandt, who has CFIDS
Chronicbabe.com
An awesome site written by and about women with chronic illnesses of all varieties.
Learning Sickness: A Year with Crohn's Disease by James Lang (Link is to the Amazon.com blurb)
Diabetes Wise has two especially compelling posts on diabetes, illness, and identity. Check out "This Post is Brought to you by the Letter E" and "A Damn Big Hole".
I would love to extend this very short bibliography. If you have helpful or related sites, please send them my way!
She is one of the most intelligent people I know. Her convictions are strong. She lives and speaks according to what she believes. She loves coffee, knitting, Emily Dickenson, a certain young doctor, her cat. She is passionate and courageous, although courageous may not be a word she wants employed to describe her. It is to close to "brave" -- as in "you're so brave," which she hears too often. It seems, she says, to work toward defining her according to her chronic illness(es).
She was diagnosed with cancer at age 3 months. She has numerous health-related complications. But it is not the anemia, the fatigue, the vertigo, the allergies, that are the most disturbing, the most complicating factors of her life. It is the day-to-day web of emotions and relationships as people are ignorant, unsypathetic, harsh, unforgiving of the limitations the impede her body. Because they can't see them, they assume that they do not exist.
This is driven home as she begins a class on issues of access to education and other basic services and human needs. Much of this class focuses on the American with Disabilities Act, with fabulous readings such as Susan Wendell's "Toward a Feminist Theory of Disability" excerpted from (I believe) her The Rejected Body. Yet when my friend asks for permission to write her papers before the course begins, in expectation of those unsuspected moments when her body simply will not comply with her will, her instructor tells her that he does not feel comfortable letting her do so. He instructs her to get permission from the Dean, implying that she is seeking special treatment rather than the rights granted her by the ADA.
And then there is my mom, who today is celebrating her 29th birthday for the 27th time. How often, with her 15 years of Chronic Fatigue, has she heard "You look so healthy!" as people ask about her health and assume that if she is out in public she must be "cured." They do not know how she has rested a full day or week to make it to an event, how she has worked on her appearance.
My mom is adventurous. She is funny and she is fun. She is strong. She is curious. She wants to know about Seneca, about the Civil War, about herbs, about most things. She likes ideas. She writes to senators. She is a reader. She is a believer in Christ and has one of the quietest, strongest faiths that I know. She is a prayer warrior. She is a thinker and she is real.
Yet 15 years ago the doctors at Mayo Clinic told her, as they have told numerous others, that she was crazy -- that the scratchy throat, the inability to speak, the inability to stand without dizziness, the constant, chronic, painful, debilitating fatigue -- was all in her head.
And over 25 years since Chronic Fatigue Syndrome first made its appearance, the Center for Disease Control only last month concurred that, indeed, Chronic Fatigue Syndrome is a real disease. Yet even so, people will continue to say, "But you look so healthy," oblivious to the fact that she is leaning her head on her hands and that her eyes are crying "let me go so I may rest." And they will continue to think that "Chronic Fatigue" means that she is a late sleeper, too lazy to get out of bed in the morning. or that she is exaggerating because, boy, they're "tired" too.
This post is in honor of my mom's birthday and my friend. Thank you, you two, for continuing to fight and live and be yourselves, and to define yourselves according to who you are, and not what others -- and your conditions -- attempt to define you.
__________________________________________
Some "invisible illness" websites:
CFIDS Association of America
National Fibromyalgia Association
Celiac Sprue Association
National Digestive Diseases Information Clearinghouse
Crohn's and Colitis Foundation of America
Some real-life stories:
"What Price Glory?"
An interview between Anna Simpkins and Seabiscuit author Laura Hildenbrandt, who has CFIDS
Chronicbabe.com
An awesome site written by and about women with chronic illnesses of all varieties.
Learning Sickness: A Year with Crohn's Disease by James Lang (Link is to the Amazon.com blurb)
Diabetes Wise has two especially compelling posts on diabetes, illness, and identity. Check out "This Post is Brought to you by the Letter E" and "A Damn Big Hole".
I would love to extend this very short bibliography. If you have helpful or related sites, please send them my way!
Wednesday, June 21, 2006
3 years ago, just prior to my wedding, I embarked from my midwestern state on a crazy 3-day journey to the last four states I had yet to see: West Virginia, Pennsylvania, Connecticut and Rhode Island. Alone, I cruised toward the ocean because I had to see the last four states before I married ( because who knew when I'd get to see my last four states otherwise?)
I had a deja vu trip this last weekend as my hubby and I set out East to retriever brother-in-law from Ft. Lee, VA. The trip went something like this:
Saturday, 11 pm I arrive home from South Dakota. 12 hours later...
Sunday, 11:30 am We hop in the car and drive, drive, drive.
I had a deja vu trip this last weekend as my hubby and I set out East to retriever brother-in-law from Ft. Lee, VA. The trip went something like this:
Saturday, 11 pm I arrive home from South Dakota. 12 hours later...
Sunday, 11:30 am We hop in the car and drive, drive, drive.
- We follow Route 52 through Ohio and stop at Ulysses Grant's Birthplace.
- I am happy to see my husband, after being seperated from him for 5 days. The gorgeous scenery increases this happiness.
- My blood sugars are not happy to be in the car. I can't make them come down, and suspect that the 2-hour difference between SD and the East doesn't help matters. Nor does an erratic eating schedule and Walmart's Cajun Trail Mix (the sesame sticks, the toffee peanuts...yum!)
Monday, 9 am We leave Lexington, VA and continue our trek east...
- Off to a late start. Not a happy camper. Pretty scenery does not help.
- At some point, I tell Handsome Hubby that I'm having a bad wife day and I want a vacation. It's true, but I'm not proud of it.
- Stop at Appomatox and thoroughly enjoy the living history talk. Especially the way a Canadian-like accent creeps out of our "Virginian" friend.
- Reach Ft. Lee for Family Day at 4 pm (when it officially begins). Bro-in-law sprung at 7. Back at 8:30. I will say no more.
- I realize that I can increase my basal rate for long car rides using that handy percentage thing. Feel brilliant. Increase it by 10% only to realize that...umm, I reduced it by 10%.
Tuesday, 8 am Head to Ft. Lee to see bro-in-law graduate from advanced.
- Graduation at 9 am.
- Go to the Quartermaster's Museum while bro-in-law fills out paper work. He fills it out. Has more. Has to find somebody. Has "just one more thing to do." We stop by the PX because he has a "quick errand that won't take too long" (I think the army warps one's sense of time...).
- 2:30 pm finally, finally, finally hit the road for a day's drive.
- Bad wife day, part II. I decide that the seeds for the fruits of the spirit have fallen on rocky soil. Deciding this does not help me behave better.
- Stop 8 million times at rest areas. May I say, as the only woman on the trip, that I did not request a stop once?????
- 1:30 am, bro-in-law driving. Backs up an exit ramp because there's a long line of traffic going nowhere. Highpoint of the trip.
- 2:30 am. Back home. After 7 days away I am ready.
- Discover that when one increases basal rate by 10 percent, blood sugars are actually pretty good. This is counting the Trail Mix. And the cookies.
Monday, June 12, 2006
495. My blood sugar was 495. One site-change and shot later, it's 392. Taking wayyyyy too long to drop. The thing is, last night I was 401 (and it was time to change out then), and I was randomly high earlier today. Que pasa? I don't usually freak out at high blood sugars -- especially when I know the source (as with the air bubble, or the major gorging on cookie dough). But this is ridiculous. And I've been really good about exercising, and about exercising to get my blood sugars down when appropriate.
I suspect a mix of things...pump, food choices...stress. Usually stress is the kicker, and I had a very full day today, watched a friend defend her dissertation (she passed with high distinction!) and I am leaving town tomorrow only to come back Saturday and turn around to leave again on Sunday. So, being supportive friend, cleaning the house, packing, errand-running = stress. As does not working on the dissertation.
But still...495?????
Hopefully, when I check in next week (when I will have wild stories about the wilds of my parent's new place in South Dakota and a road trip to VA) I will be able to report beautiful blood sugars. Wish me luck!
I suspect a mix of things...pump, food choices...stress. Usually stress is the kicker, and I had a very full day today, watched a friend defend her dissertation (she passed with high distinction!) and I am leaving town tomorrow only to come back Saturday and turn around to leave again on Sunday. So, being supportive friend, cleaning the house, packing, errand-running = stress. As does not working on the dissertation.
But still...495?????
Hopefully, when I check in next week (when I will have wild stories about the wilds of my parent's new place in South Dakota and a road trip to VA) I will be able to report beautiful blood sugars. Wish me luck!
Saturday, June 10, 2006
Friday, June 09, 2006
Yesterday was a beautiful blood sugar day. The highest I was was 118, the lowest, 64. Overall I averaged a lovely 102. I wasn't sure why, but I was happy to accept the numbers.
Today: wake up at 205. Two hours later I'm in the 300s. I take a shot and begin to drop. 204. After lunch, 254. Then, just now, 384. I notice an air bubble that is more than half the pump tubes' length. The kind that alternates with insulin a bit, and then, air. I guess my resovoir has just been full of air, and I've missed it, because that is the only way I can account for the air bubble and my general sense of ickiness.
I even tested for keytones, just to see, and because I wondered if "general sense of ickiness" = protein in urine. This time around, it does not. And anyway, I wouldn't know what to do if it did. I've called the doctor in the past and they just said to drink water and not to worry. Okay.
What do other diabetics do?
And since I'm wondering about other diabetics...a couple of health-related/pump-related questions.
Today: wake up at 205. Two hours later I'm in the 300s. I take a shot and begin to drop. 204. After lunch, 254. Then, just now, 384. I notice an air bubble that is more than half the pump tubes' length. The kind that alternates with insulin a bit, and then, air. I guess my resovoir has just been full of air, and I've missed it, because that is the only way I can account for the air bubble and my general sense of ickiness.
I even tested for keytones, just to see, and because I wondered if "general sense of ickiness" = protein in urine. This time around, it does not. And anyway, I wouldn't know what to do if it did. I've called the doctor in the past and they just said to drink water and not to worry. Okay.
What do other diabetics do?
And since I'm wondering about other diabetics...a couple of health-related/pump-related questions.
- I used to wear my pump in my abdomen until it stopped absorbing. That didn't take long at all. I can make it last about 12 hours before my blood sugars creep up for no obvious reason. I never get a warning signal, it just quits working. My doctor thought it was becuase I didn't have enough fat on my stomach, but I don't think that's the case (having grown some since I got married!)I am now wearing my pump in my arm because my thighs were getting gross and it never lasts anywhere else. My doctor said I could wear it anywhere on my arm, but it hurts like heck in the muscle. Any suggestions about how high/low, how far around to go? Or how to make the thing work in my abdomen?
- About three months ago on a totally normal blood sugar day my right eye seemed kind of fuzzy. The fuzzyness comes back on and off and scared me so much that I made an emergencing eye doctor appointment. He gave me a full workup and checked for all the usual suspects, and everything was fine. He suggested maybe it gets fuzzy when I'm having highs, and sometimes that's the case but not always. Has anyone else experienced this?
Thanks for the feedback!
Tuesday, June 06, 2006
I am hesitant to post political stuff up here, but consider this a mild rant:
I have a brother-in-law in the reserves. He's been in training for the past few months. The more I hear about the inner-workings of this branch of the army, and the more I experience the tangential frustrations of having family in the armed forces (he's being deployed, he's not being deployed, he may be being deployed, we'll know tomorrow, next week, when he gets back, when he reports to command...), the less confidence I have in our government in general.
Case in point: today was the platoon's last exam of advanced training. Many people cheated. Many people were caught cheating. Many people were punished, but none were discharged. These are the same people who, after X number of months in training, still do not know how to follow orders and as a result have the whole platoon doing extra PT because they're too dense to learn. These are the people who have been threatened, repeatedly, with being sent back to day 1 of Basic training as punishment, but who nonetheless were allowed to graduate on to advanced training. These are the the "Army of One" working as a team (don't get me started on the brilliance of this statement) who are supposed to work with, and help, and protect, my brother-in-law?????
I am no longer surprised at prison abuse or the murder of Iraqi civillians or rape and victimization perpetuated by our troops worldwide. I am only sorrowful that their leaders can't muster the fortitude and character to make the changes necessary to prevent it.
I have a brother-in-law in the reserves. He's been in training for the past few months. The more I hear about the inner-workings of this branch of the army, and the more I experience the tangential frustrations of having family in the armed forces (he's being deployed, he's not being deployed, he may be being deployed, we'll know tomorrow, next week, when he gets back, when he reports to command...), the less confidence I have in our government in general.
Case in point: today was the platoon's last exam of advanced training. Many people cheated. Many people were caught cheating. Many people were punished, but none were discharged. These are the same people who, after X number of months in training, still do not know how to follow orders and as a result have the whole platoon doing extra PT because they're too dense to learn. These are the people who have been threatened, repeatedly, with being sent back to day 1 of Basic training as punishment, but who nonetheless were allowed to graduate on to advanced training. These are the the "Army of One" working as a team (don't get me started on the brilliance of this statement) who are supposed to work with, and help, and protect, my brother-in-law?????
I am no longer surprised at prison abuse or the murder of Iraqi civillians or rape and victimization perpetuated by our troops worldwide. I am only sorrowful that their leaders can't muster the fortitude and character to make the changes necessary to prevent it.
Saturday, June 03, 2006
I'm showing my novice state here, but I have a few questions about blogging that maybe you'll be able to help me with. Such as 1) I really want to respond to specific comments. Is there a way I can do this right after the comment? I havent' been able to figure that out yet. 2) I would like to add a blog roll and a place for links in general. How do I do this using blogger? I see others have done it but I haven't found the magic button yet. Thanks for any guidance you can give!
In other news...the blood sugars are still on the high side, but not nearly as bad. I am a much happier camper. I read a fun book yesterday (How the Garcia Girls Lost Their Accents) and pretty much ignored the diss, so that was nice, too. Handsome Hubby and I had a delightful evening of "What shall we do tonight?" So, we went to Walmart, which is always an enlightening cultural experience. He made my day this morning by telling me he was going to clean my car! This is the first time in our 2 11/12 years of marriage that he has done this. Judging from my butterflies -in-my-stomach, that-is-so-romantic response, I think my "love language" (per Gary Chapman's The Five Love Languages) is having people do things for me.
My car looks beautiful! And my hubby is great. :-)
In other news...the blood sugars are still on the high side, but not nearly as bad. I am a much happier camper. I read a fun book yesterday (How the Garcia Girls Lost Their Accents) and pretty much ignored the diss, so that was nice, too. Handsome Hubby and I had a delightful evening of "What shall we do tonight?" So, we went to Walmart, which is always an enlightening cultural experience. He made my day this morning by telling me he was going to clean my car! This is the first time in our 2 11/12 years of marriage that he has done this. Judging from my butterflies -in-my-stomach, that-is-so-romantic response, I think my "love language" (per Gary Chapman's The Five Love Languages) is having people do things for me.
My car looks beautiful! And my hubby is great. :-)
Friday, June 02, 2006
After having writer's anxiety for the last 3 days because I had know "audience" for my blog, I dreamed last night that when I logged on this morning I had tons of comments. And really, I do. Thank you all who have commented and welcomed me to the blogosphere. Your friendliness more than makes up for yesterday's bad day!
Edited to add: This is the third time since I started this blog that I've noted mispellings -- mostly homonyms ("know" for "no" and "breaks" for "brakes," etc.) The other times I've edited them after catching them. But, as my husband and I say, "School's out." If they exist, it doesn't matter! Now, if I start doing that awful AOL stuff, LOL, BTW -- it matters.
Edited to add: This is the third time since I started this blog that I've noted mispellings -- mostly homonyms ("know" for "no" and "breaks" for "brakes," etc.) The other times I've edited them after catching them. But, as my husband and I say, "School's out." If they exist, it doesn't matter! Now, if I start doing that awful AOL stuff, LOL, BTW -- it matters.
Thursday, June 01, 2006
Today was one of those days where blood sugars conspire to sabotage everything. Their conspiracy suceeded.
My husband and I have been trying to run each morning this week. I say "trying," because we're trying to adjust my insulin so that I'll wake up about 180 or so and be able to run without plummeting and without needing to guzzle juice. I woke up at 6:30 am at 140, so we forgoed (forgone? forwent?) running. 1 hour later I was 258. After adjusting my insulin and working out, I was 303. Then I noticed the "low battery" sign; so, okay, replace the battery. Bolus. And give a corrective shot, since it usually takes a long time to come down.
Of course, I felt very irritable and not at all wanting to be social, which is what I was supposed to feel like since we had a lunch date. And after lunch I felt a little less irratable, since I was done to something like 280. At that point, I was anticipating a rapid plummet. So I made sure to test frequently.
One additional reason I felt irratable was that I was supposed to meet the two important members of my dissertation committee for comments on my most recent dissertation chapter. I had a deep sense of foreboding, and while they're both nice and reasonable (and smart) people, I was dreading this meeting. Dread+high blood sugar = NOT GOOD.
Right before the meeting (still anticipating a plummet) I was 99. Having done these blood sugar things before, I knew that if I didn't put the brakes on I'd be 40 and sweating and incoherent in front of my committee in no time. So, I sipped some coke and had some chocolate. Had a terrible meeting. The stuff I worked so hard on wasn't good enough and the stuff that I know is wrong they made sure to tell me was wrong. Now, don't get me wrong -- this is what they're supposed to do, and they did it honestly and nicely, and I appreciate it. But dissertating is discouraging. Having thoughts but not being able to articulate them in a smart way or specific way is frustrating. Trying to grapple with the legions of scholars who've written on my topic is frustrating. And by the time they got to the stuff they liked about my chapter I was really frustrated. And so I cried. In. Front. Of. My. Committee. Not weepy crying. I kept it undercontrol by nodding my ahead and keeping my mouth shut. But still.
And then I came home and was 380. After lots of water and a run I was 330. And so I said "shit." I felt a little bit better.
My husband and I have been trying to run each morning this week. I say "trying," because we're trying to adjust my insulin so that I'll wake up about 180 or so and be able to run without plummeting and without needing to guzzle juice. I woke up at 6:30 am at 140, so we forgoed (forgone? forwent?) running. 1 hour later I was 258. After adjusting my insulin and working out, I was 303. Then I noticed the "low battery" sign; so, okay, replace the battery. Bolus. And give a corrective shot, since it usually takes a long time to come down.
Of course, I felt very irritable and not at all wanting to be social, which is what I was supposed to feel like since we had a lunch date. And after lunch I felt a little less irratable, since I was done to something like 280. At that point, I was anticipating a rapid plummet. So I made sure to test frequently.
One additional reason I felt irratable was that I was supposed to meet the two important members of my dissertation committee for comments on my most recent dissertation chapter. I had a deep sense of foreboding, and while they're both nice and reasonable (and smart) people, I was dreading this meeting. Dread+high blood sugar = NOT GOOD.
Right before the meeting (still anticipating a plummet) I was 99. Having done these blood sugar things before, I knew that if I didn't put the brakes on I'd be 40 and sweating and incoherent in front of my committee in no time. So, I sipped some coke and had some chocolate. Had a terrible meeting. The stuff I worked so hard on wasn't good enough and the stuff that I know is wrong they made sure to tell me was wrong. Now, don't get me wrong -- this is what they're supposed to do, and they did it honestly and nicely, and I appreciate it. But dissertating is discouraging. Having thoughts but not being able to articulate them in a smart way or specific way is frustrating. Trying to grapple with the legions of scholars who've written on my topic is frustrating. And by the time they got to the stuff they liked about my chapter I was really frustrated. And so I cried. In. Front. Of. My. Committee. Not weepy crying. I kept it undercontrol by nodding my ahead and keeping my mouth shut. But still.
And then I came home and was 380. After lots of water and a run I was 330. And so I said "shit." I felt a little bit better.
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