Friday, December 21, 2012

More Insulin For Less

When I started pumping with XPU (eXternal Pancreatic Unit) I changed from buying insulin pens to insulin vials. Every month I got two vials. Sometimes I worried about running out. The feeling of sucking out the last drops of a vial makes me sick to my stomach. Especially when I can't get a refill for another two days.

This month I realized something. There are 2,000 units in two vials. Two boxes of insulin pens are 3,000 units.

Since my prescription was about to expire I wondered, what if I filled my insulin pump using pens instead of vials? That way I would have more insulin for the same co-pay.

Filling my pump cartridge from a pen was easier than using a vial. All I did was tug the plunger down twice like always. Instead of filling the cartridge with air afterwards, I simply stuck the needle in the insulin pen gasket. With no air in the cartridge, I dialed the insulin pen to 60 units and pushed the button. Insulin forced the plunger up as it filled the cartridge. I repeated this until I filled my cartridge. Best of all my cartridge didn't get as many bubbles.

Having plenty of insulin in the fridge is a comforting feeling. Especially today. Doomsday. Oh noes!

Wednesday, December 12, 2012

Fourteen Years Cancer Free


One hundred thousand people in a stadium, so many people they look like pixels. Odds are 8% of them have diabetes. .01% of them have MG. What are the odds that any of them have thymoma cancer?

Well, we need more stadiums.


One in 1.3 million, about 400 people a year in the USA, are diagnosed with a thymoma tumor. I was one of them in 1998. Seeing dark circles on my CT scan changed everything. I never felt so alone.

Now I am celebrating the holidays with my family for the 14th time since I was diagnosed. Fourteen times of wrapping gifts. Fourteen times unwrapping them together. Fourteen holiday meals. Life is a gift, one that I need to stop and marvel at sometimes.

The downsides of having cancer are so obvious they aren't worth mentioning. The upside? Only a handful of people in the world know the joy of surviving thymoma. I get to be one of them. Fourteen years cancer free. That is reason enough to smile today.


Wednesday, December 5, 2012

Tuesday, December 4, 2012

Myasthenia Gravis And Loneliness

I live with both diabetes and MG. Having diabetes in the internet age means I don't deal with this alone. The Diabetes Online Community, the DOC, offers powerful peer support for me. We connect through Twitter and Facebook and blogs like this one to support one another in coping with diabetes.

In the USA over 25 million people live with diabetes. We could fill 250 100,000 seat stadiums. We make up 8% of the population. If 8% of the people in a stadium stood up and yelled, everyone would hear the roar. If their family and friends stood up, well, almost everyone would be on their feet.

In the USA about 36,000 people live with myasthenia gravis. That is .01% of the population. That works out to about 14 in a 100,000 people. If 14 people stood up in this stadium, would you see them? Would you hear them yell?

Take a long look at the stadium photo. Fourteen people in 100,000 know what MG feels like. Just looking at that picture makes me feel lonely. Rare things are often prized, but not when it is a rare disease. Loneliness is a difficult challenge, but it isn't insurmountable. We live in the internet age and the internet is magical.

In bigger cities there are support groups for people with MG. Only, not everyone lives near a support group, and not everyone thrives in a group. Like me. My name is Marie and I am an introvert. I like people a great deal... in small, infrequent, doses. Support on the internet works best for me. The diabetes support I have received online has been a source of strength and joy in my life. I hope to see the same thing available to anyone who has MG and feels lonely. MG is hard and frustrating. I know what it feels like. Other people do, too.

I blog about MG. Are there other bloggers out there? If you blog about MG please let me know. Do you tweet about MG? If so, please join us. The small group of people I found on Twitter who live with MG:



These MG warriors know what you are going through. MG feels lonely, but you're not alone. That list is proof of it. In an imaginary stadium of 100,000 people let's get seats together. We might be a small section, but we can be strong together nonetheless.


Friday, November 30, 2012

Language Matters

If you haven't had a chance to read this Diabetesaliciousness post about never saying someone has severe diabetes, take a look. Kelly reminded me how much language matters. She also reminded me how inadvertently hurtful people can be. The ignorance of saying someone has severe diabetes based on the use of an insulin pump is cringe worthy. But, instead of cringing, or getting instantly angry, Kelly took a moment to teach a little more about diabetes. Thanks to Kelly one person learned something new and got a perspective adjustment.

An anonymous African American slave is credited with the proverb, "Each one teach one." If you learn to read it is your duty to teach one other person how to read. If you gain any knowledge pass it along to one other person. Kelly did this and then shared the process on her blog. It gave me a huge smile when I read it. Each one teach one.

I've only dealt with the crazy Disney World teacup ride of diabetes for a year and a half. I have dealt with disability for 15 years. I've used a powerchair off and on for eight years. Depending on where MG is attacking, some days walking just sucks.

"Severe diabetes" made Kelly cringe. "Confined to a wheelchair" makes me cringe. One of the most liberating experiences I ever had was the day I took my first powerchair out into the world.

I spent an entire summer with leg muscles that grew weaker every day. When my legs wouldn't move more than ten steps without collapsing, my world shrank. Getting an ice cream from the ice cream truck was impossible. Going to a store, a movie, out to eat with a friend vanished. Going to a wedding, a funeral, a graduation, a school play, a concert, a park, the zoo, a museum -- all of these ordinarily things that make life worth living disappeared. For five months I was on house arrest. Not because I committed a crime. I was trapped because I needed a powerchair and did not have one. That was the most confined I have ever been.

I received my first powerchair in November of 2004. I rocked my hand forward on the joystick and moved by myself. I went for a cruise on the sidewalk a whole block away from home. Two blocks. Fifteen blocks. I went to a park and watched the leaves fall. For the first time in five months I wasn't confined anymore. I was free. The joy I felt still echos in my life.

Confined to a wheelchair? Confined? Really? Confined is needing to move and not being able to move. I can move! I am anything but confined. My powerchair, like my insulin pump, transformed my life for the better. Confined to a wheelchair is cringe worthy in its inaccuracy. Ditto with wheelchair bound.

Instead, we can say Marie is a wheelchair user. Or Marie uses a wheelchair. She is a powerchair user. She uses a powerchair. A powerchair is a tool I use, not a destination, or a reflection on the joy in my life. I love my powerchair. I love my insulin pump. I feel blessed to have both in my life.

Terms like confined to a wheelchair, or Wheelchair bound, assume that a wheelchair is a trap. I am trapped by the distance my legs can move before I fall down. Confined to a wheelchair and wheelchair bound convey pity and a sense of hopelessness when the opposite is true. The terms heap negative assumptions about the person who uses the chair. A wheelchair is adaptive equipment and not a state of mind. Adaptive equipment is commonplace. After all, eyeglasses and contact lenses are also adaptive equipment.

 Confined to glasses. Contact lens bound. No one would say that because it sounds ridiculous. Glasses and contacts enhance life. They don't restrict it. Everyone knows that.

The perspective shift is this...

Glasses are for eyes. Wheelchairs are for legs. That's it. That's the only difference between them. Knowing this, consider the terms confined to a wheelchair and wheelchair bound. Don't they sound ridiculous? Wheelchairs don't restrict life. They enhance it! Now, each one teach one.


Monday, November 26, 2012

Bad Insulin. Bad! Bad!

I was dozing on the couch when I heard a buzzing noise. My Dexcom was on the coffee table buzzing away. Buzz! Buzz! May I have your attention please. Your blood glucose is high. Repeat, your blood glucose is high! This is not a drill! Buzz! Buzz!

I saw the number 350 on my Dexcom and assumed it was the time. Except the time doesn't usually have an arrow beside it. And doesn't the time usually have a colon between the numbers? Wait, is my blood glucose really 350 and rising fast?

I rolled over and fumbled for my testing supplies. I used my iPad as a flashlight when I checked my blood glucose. 338. It was 338 at 3:34 in the morning. I sat up. Sleepiness evaporated. Why in the %#$* is my blood sugar so high?

Last time my blood glucose was that high I forgot to reconnect my pump after my shower. I felt my pump tubing and the connection was solid. It took me a moment to figure out what to do next. Troubleshooting at 3 am is hard on the brain.

My head felt like someone hung me upside down by my ankles. That head rush, my blood sugar is soaring, feeling made my stomach hurt. I headed for the laundry room closet where I keep my syringes and then realized I'd forgotten to get more. Crap! Ok, I'll use my pump to correct. I told my pump what my blood sugar was. XPU the Pump said, "You need a crap load of insulin." She suggested a bolus and I clicked OK. I felt the sting as the insulin went in my site.

I went back to the sofa and waited. At some point my blood sugar was going to go down. Half an hour later Dexcom Buzzed. Warning! Warning! Your blood sugar is higher than a kite. I checked. 301. Well that's an improvement. Another hour went by and then another. Sunlight streamed into my living room. Three hours later my BG was 280. That cannot be right.

I yanked off my set, put in a new set and tried again. Three hours later my blood glucose drifted down to 250 and then stayed there. I had more insulin in my body than gas in my car. Why isn't this working? Is my pump broken? I primed my set and watched insulin pool on a paper towel. My pump was working fine. I let out a groan. I was so tired. It was eight in the morning and I hadn't gone to bed yet. My daughter and husband got up and had breakfast. I was telling them what was happening with my blood sugar when Dexcom buzzed again. Danger! Danger! Your blood glucose is high!

I felt like crying. My head hurt. I was hungry. No matter what I did I couldn't make my diabetes behave. Ten hours later I decided to yank the new set, dump the insulin in my cartridge, open a new vial and start all over again. One rage bolus later my BG fell immediately and settled into a happy 118.

I can only come to one conclusion: the insulin in my pump was bad. Bad insulin. Bad! Bad! I was pumping skunky insulin the whole time. This experience taught me a few things.

1. Dexcom rocks. I get upset with it for being inaccurate sometimes, but it woke me up when there was a problem. I love my little guardian angel egg.
2. Not getting sleep sucks.
3. Always have syringes. Always.
4. Insulin is magic sauce. Except for when it is bad and needs to sit in the time out chair.
5. Don't wait 10 hours before changing the cartridge and the set. When in doubt, throw it out.

By some miracle I only tested positive for small ketones. Maybe it's because I started intervening right away? I've decided to stop using vials and fill my pump with insulin pens instead. That way when Dexcom wakes me up in the middle of the night I'll be ready. But right now... I need a nap.

Monday, November 19, 2012

On Failure

I have spent the past few months writing a book. It's the sequel to LIFE MUSIC: Lessons Learned at the University of Catastrophe. You can read an excerpt here. The new book is another collection of essays reflecting on living with (and around) diabetes and MG.

I've gotten 34,396 words done of a 60,000 word draft. I am just past the halfway mark. Or at least I thought I was. For the past three weeks I have had a nagging suspicion that I am writing the wrong book.

At first I denied it. I wrote endless journal entries about self-doubt and read about writer's block. Am I letting anxiety and doubt cloud my thinking? Determined to finish the book I kept working on it.

Only, the more I wrote, the worse my doubt became. Am I lost? Am I running a marathon race in the wrong direction? Am I doing this wrong? Have I... failed? Last week I looked over my draft and vacillated between finishing it and starting over.

 On Saturday my doubts overflowed into a meltdown. In tears I told my husband that I think I am writing the wrong book. That's when Steve reminded me the same thing happened when I was writing Life Music. I wrote the wrong book first and then I wrote the right one. I'd forgotten. As soon as he reminded me, the nagging feeling went away. My current book draft is a failure. A 34,396 word, 109 page, failure. I have spent several months on a journey using a broken GPS and an upside down map.

Marching with great confidence in the wrong direction is part of writing, or any bold endeavor. Fear of failure has hindered me in the past. Now I realize that failure is part of creating. Failure throws bricks at me. It doesn't feel good to be hit by bricks, but it happens sometimes. I can choose to stay buried under my failures, or I can stack them up and stand on top of them.

I tried writing a book and 34,396 words later I failed. How liberating! Now I have freedom to let go of what doesn't work so I can search for what does. This failed draft isn't my first draft, or my rough draft. It is the compost draft. Grind up the words that don't fit and turn them into compost. The next 34,396 words will be better, closer to my vision, and worth all the panic attacks and tears. Tonight I am stacking failure bricks and standing on them.

I am taking a break from my book project until January. After I toast the new year, and recover from my hangover, I'll be back at it. You can count on it.

"Put down everything that comes into your head and then you're a writer. 
But an author is one who can judge his own stuff's worth, without pity, and destroy most of it."   Colette (Sidonie-Gabrielle Colette)


Wednesday, November 14, 2012

World Diabetes Day

Today is World Diabetes Day. I celebrated by going for a walk. My blood glucose was 153 mg/dl when I started and 126 mg/dl when I was done. The entire time I was walking I thought about The Big Blue Test. I thought about #DSMA. I considered how many millions of people around the world live with diabetes.

When I was diagnosed July 24, 2011 I felt alone. I felt like I was the only person who had diabetes. I didn't now how I would handle all the changes in my life. Then I found the DOC. I found other people living with diabetes, thriving with diabetes, sometimes cursing diabetes. I saw how they took care of their diabetes and managed it. I discovered there are other people who start their morning with a blood drop, a meter and a soft grunt at the result. Millions of people do this every day. And so do I.

The people who live with diabetes, and live around it, and parent around it, are my tribe. We are a worldwide tribe of people who "get it." I have to live with diabetes. World Diabetes Day reminds me life is best lived....

Together!

Thursday, November 8, 2012

Bubble Trouble

Several nights in a row my Dexcom has woken me up.

BUZZ BUZZ. Excuse me, Marie. I hate to be a bother, but your BG is rather high right now.

BUZZ BUZZ It's me again. I hate to disturb you, but it seems your BG is high again.

BUZZ BUZZ Oh I am terribly sorry. My programing requires me to inform you that your blood glucose is high.

BUZZ BUZZ...

Shut up! That thing is more demanding than a puppy.

It was also right. My blood sugar was rising overnight. I got into a routine of testing and correcting with my pump, getting frustrated and giving myself a rage bolus with a syringe. My blood sugar fell as predicted. So, why wasn't my pump working.

droplets,nature,splashes,water,bubbles,waves,ripples,airI got up, changed my set, primed my tubing, went back to sleep and everything was fine. For a day or two. Then the same thing happened. I was so frustrated. Finally I pulled out my cartridge instead of my set. Then I saw it. Bubbles. Hundreds of them. Bubbles everywhere, like some lunatic spit at the top of my cartridge. Where did these evil things come from? I primed out the bubbles and everything worked better.

Now I have a new and improved pump filling routine. I fill my cartridges 48 hours in advance. This gives all the almost invisible bubbles a chance to migrate to the top of my cartridges. Then I push them out of the cartridge while my pump is rewinding. Bye bye evil bubbles. Finally I stopped having bubble trouble.

So of course yesterday I forgot to plug my pump back in after my shower. Yeah, that was kinda dumb. It turns out not having insulin for several hours wasn't a good idea. I did get to see what a ketone stick looks like when it turns purple. And I learned that high blood sugar can make my face buzz like I am playing an invisible trumpet. Between my pump and yet another syringe, I got it straightened out.

Bubbles I can fix. Being an absent minded professor, not so much. Ah well. Two steps forward, one step backward. That's still forward progress and it matters.







Wednesday, October 31, 2012

Monday, October 29, 2012

Bad Diabetic?

A friend of mine has been struggling. His blood sugar has been higher than he likes. He called himself a "bad diabetic." That bothered me. Diabetes is hard to manage. Everything we do has an impact on our blood sugar numbers. Dealing with this all day every day is tough.


 That was my number on Sunday after eating breakfast. It wasn't what I wanted to see. Sometimes I feel like my best isn't good enough. Maybe if I dig deeper, push harder, try more, I can manage my diabetes perfectly. And I do better... for a while. I eat lower carbs. I eat more of the right things and less of the wrong things. My weight goes down. My energy goes up. I feel like I have a handle on things and then... And then I eat breakfast with a friend and munch on this and that.

I take my Dexcom out of my pocket. Dexcom buzzes 200 High. Mutter under my breath. Nudge Dexcom to alarm at 220, then 240, 260, 280, 300. Buzz! Buzz! Buzz! This is crazy. I 'm going to check my blood sugar. 305?!? Reach for my pump and enter my blood glucose number. Pump alarms, tells me my blood sugar is high, to check for ketones and monitor my blood glucose. As if I didn't know this. As if I didn't feel bad enough already. My technology beeps and buzzes the sounds of shame and failure.

But am I a bad diabetic?

No.

I am a human. I am a human who is fallible and limited. Diabetes management requires an extraordinary commitment. An ordinary human being doing extraordinary things is going to struggle sometimes. Perfection is out of my grasp. There are too many variables that are out of my control. But, that doesn't mean I am doomed to fail. There are other grades between F and A, places between failure and perfection. Getting a B on a test is above average. It is good enough and then some. I can't attain perfection. I can reach for good enough and then some.

Most days my blood glucose is in target. Most days are good enough and then some. I don't believe there are bad diabetics. There are people who are struggling and vowing to do better. When I vow to do better, every setback becomes an invitation to shame and remorse. I promise to do better, fail to do better, kick myself for failing, and vow to try harder. This subtracts joy from my life and hope as well. Kicking myself for wrong choices has never helped me do better. Diabetes is painful enough. I don't need to knock myself down, too. 

Lately I have been traveling a different path. Vowing to pat myself on the back for every healthy choice adds joy to my life. Did I test before I ate? Good for me. Did I count my carbs accurately? Good for me. Did I bolus? Good for me. Did I take a walk? Good for me! Praising right choices leads to more right choices. This creates an atmosphere of celebration inside. Joy multiplies day by day. People wonder why I smile a lot. That is why!

So, to my dear friend who is kicking himself and promising to do better, stop. Be at peace. Look for the right choices you are already making and savor them. Then add another right choice. And another. Every step in the right direction deserves to be celebrated.You can heal and grow. I know you can. Your friendship is a treasure to me. Remember, I have your back. Always!

Sunday, October 21, 2012

Easy as a walk in the park


One of the first things I learned after I was diagnosed with diabetes was how important exercise is. Exercise helps increase insulin sensitivity. Exercise burns up excess glucose in the blood.

One of the first things I learned after I was diagnosed with myasthenia gravis were techniques for human energy conservation. Don't stand when you can sit. Get a family member or hire someone to take pets for a walk.

Am I the only one who is left wondering how to exercise while resting? Do I walk the dog to lower blood sugar, or have my husband walk the dog to save energy? It took me a while before I understood the obvious answer. I do both.

On good days when my leg muscles function, I take the dog for a walk in the park. Kick the leaves. Listen to the wind. Breathe deep and enjoy the autumn air.

On bad days when my leg muscles laugh instead of moving, I rest. Enjoy the feeling of stretching out my legs. Savor tea. Read a novel. Snuggle with the cat on the sofa.

Knowing I can do both helps. It allows me to tune in to how my body is feeling and do what I need to do to care for myself. Sometimes MG needs more attention than diabetes. Sometimes it is the other way around. The tough days are when I have both high blood sugar and weak muscles. Fortunately those days are few and far between.

Today was a good walking day, so I took a walk. I even participated in the Big Blue Test.

"The Big Blue Test is a program of the Diabetes Hands Foundation that encourages people with diabetes to test their blood sugar, exercise for 14-20 minutes, test again and share their experience on BigBlueTest.org. For every test, people with diabetes in need receive life-saving supplies through Big Blue Test grants that are awarded to humanitarian diabetes charities in the US and around the world, made possible thanks to the program sponsor."

Before I took a walk my blood sugar was 144. After a 20 minute walk it was 118. Lowering my blood sugar was as easy as a walk in the park. Try it! It works!

Days like today I feel like I am headed on the right road and going in the right direction. I don't know where the path leads, but I am on the road to find out.

Photo By Steven Smith 

Wednesday, October 17, 2012

Feeling Stronger

I skipped my weekly chemo last week. After too much physical pain from the medication and not enough help, I took a step back. During the week myasthenia gravis rebounded. I expected that. By Monday afternoon my shoulders were so weak using an iPad was challenging. If I want to play the cello, I need strong arm muscles. MG is currently attacking my arms more than my legs. For about a decade it was the other way around. I had stronger arms than legs. For a while I could walk a ten step radius from the nearest chair. That was as far as I could move before I was liberated by a powerchair. Yes, liberated. Not confined.

Confined to a wheelchair makes absolutely no sense. Get up and take 10 steps away from your chair. That's as far as you are allowed to walk today. Do you feel confined? Trapped? I did. That is as far as I could walk for months. The misery I felt goes beyond tears. Only music can speak it. I was trapped in my house. My powerchair freed me from being on house arrest. For 10 years I used a powerchair until one morning MG moved from my legs to my arms. Why the move, I have no idea. It just stopped attacking my leg muscles and moved away.

With MG primarily in my shoulders walking is easier. Braiding my hair is harder. Standing to brush my teeth is possible. Playing the cello is tough. I would like to live in a world where I can walk and braid my hair, stand up to brush my teeth and play my cello. I don't know if that world is possible. I do know that skipping chemo last week allowed me some inner peace for a bit. Skipping chemo sick for a week was a relief. MG antibodies rebounded, so I got weaker. But, I think it gave yesterday's chemo pills antibodies to seek and destroy. Other than attacking me, the medication attacked diseased white blood cells.

I felt tired. I felt dizzy. I felt really nauseated. However, the full body pain wasn't there, so chemo wasn't too bad. What a relief that was. I followed diabetes sick day rules and drank Coke for breakfast. It helped and didn't spike me at all. For some reason, my Coke and insulin cocktail never spikes my blood sugar on chemo day. Maybe MG and diabetes have a chemo day truce? Or maybe insulin works really well on pure sugar without fat to slow it down. I spent the day resting and now I feel much stronger. I can use my arms and my legs today. That is no small thing. Today is a rare day.

My health is fragile, like this orchid.

Photo Credit: Steven Smith


Fragile things need to be looked after carefully. Taking a week off from chemo gave me a chance to breathe and rest. I am back on track with the medicine and more in balance with my life. I can't heal MG or diabetes, but I can take the time to heal my spirit. I am glad I did. I feel rested and ready to meet whatever comes my way.

Friday, October 12, 2012

No Chemo Week

I skipped my chemo meds on Monday night to give myself a much needed break. So far MG has stayed reasonably quiet. My mood has lifted considerably. I am glad I gave myself the break I needed. I just wish I didn't have to get backed so far into a corner before realizing I have other options. Maybe next time I will figure out I need a chemo break a lot earlier. Maybe. But, probably not. I am glad I have family and friends who look after me. I couldn't do this alone.

I used my break this week to spend more time outside. Taking time to enjoy nature reminds me to take time to enjoy my life.

Sunday, October 7, 2012

Questioning the Answer

In August 2005 I started treating my myasthenia gravis using cytotoxic medication. I started an experiment that lasted until January 2007. It involved moderately high dose pulses of IV chemotherapy once every three weeks.

I wrote that so clinically. Reality was I spent six hours in the treatment room having chemo pumped into my veins. I spent the next five days on the couch. It took a full week to recover from the chemo pulse. One week of illness traded for two weeks of muscle strength.

One week sick, two weeks feeling better. One week sick, two weeks feeling better. We were hoping chemo pulses would put my MG in remission. When that photo was taken I had almost no white blood cells left and I was anemic. I lost my hair, most of my eyebrows and my eye lashes. Chemotherapy wiped out my immune system. It caused caused mild dementia. What the chemo did not do was put my MG in remission. We did 24 pulses and I never did go into remission. 18 months of medical torment for little gain. The experiment stopped in January 2007. My medical team changed me over to a new chemotherapy regimen. 

Instead of IV pulses, I take chemotherapy pills once a week. I've done this faithfully since 2007. Every Monday night I swallow a handful of tablets and on Tuesday I feel awful. The trade of muscle strength in exchange for feeling poisoned on Tuesdays has never been easy. I feel like I am holding a tiger by the tail. I don't like holding on, but I am terrified of letting go. I know what MG is capable of doing to me. I have been too weak to swallow, hold up my head, talk, move, dress myself. I have been too weak to get up from bed. I know MG. I also know that chemotherapy treatment is just as hard.

My last three chemo Tuesdays were spent on the edge of tears. Every inch of my body felt bruised. Every movement, no matter how small, hurt like being hit with a small ball-peen hammer. Nothing made the pain better. Lying absolutely still in bed, afraid of using a straw because it would hurt, or crying because my iPad hurt my arms, is more than I can deal with. It's more than anyone should have to deal with.

The treatment has become as bad as the disease. Once I got six days of feeling better. Now I feel chemo sick well into Thursday afternoon. Three days sick exchange for four days well. Is this a fair trade? Instead of enhancing the quality of my life, treating MG is lowering it.

As of 2012, myasthenia gravis is incurable. Medication cannot heal me. I already tried intensive chemotherapy and that didn't stop my MG. It remains catastrophic despite everything I have tried to fix it. I would be saddened by this, except I am too tired from 15 years of tiger wrestling to feel sad.

Right now more medicine isn't the answer. Thinking about my quality of life is the answer. I need to enhance my quality of life because for the past few weeks it has been too low. I have been tired and depressed because of the pain from chemo. It has become a shadow in my life.

Last Tuesday while I was lying on the bed next to my husband and trying not to cry, Steve suggested a chemo break. Evelyn came into my bedroom and suggested the same thing. Maybe they are right. Chemotherapy is poisonous stuff and lately I have been feeling poisoned by it. I have taken breaks before to give my body a chance to heal. Perhaps I need another break. My quality of life is too low, and it isn't MG that is causing it. Right now the treatment is as bad as the disease. I am in a tough spot. It is a good thing that I am tougher.

Wednesday, October 3, 2012

Officially Scary Low

I was watching Netflix on my computer when I started feeling woozy. A little dizzy. A little sweaty. I felt like I was going low. I reached for a can of Coca-Cola and drank it. I expected to feel better quickly. When I didn't feel better I decided to test.


This was officially scary.

I didn't feel THAT low. I felt 40's low. Numb face, numb fingers, can't think or focus on what to do. Maybe my meter freaked out. Or maybe the Sugar Reaper showed up in my living room. Either way a blood sugar of <20 was hopefully a once in a lifetime reading.

Somehow I managed to not pass out. I drank several cans of Coke and stayed still on the sofa. Next time I tested I was 126. Then 196 and then... well, and then XPU the pump and I had a chat. Fixing a BG of <20 created a BG of >220. I didn't care. I still don't care. Sometimes the Rule of 15's doesn't apply.

This morning I woke up at 170. Normally a BG of 170 when I get up makes me angry. This morning I was just glad to wake up at all.

Tuesday, October 2, 2012

No D Day!

I do what I'm told.  :)  For once. 



Here is something totally non D related that gave me a smile all day. Enjoy!

Tuesday, September 25, 2012

Differently the Same

I was at TCOYD in Des Moines Iowa over the weekend. Bea drove us from Illinois to Iowa in George the Beetle. We listened to The Beetles and the songs are still stuck in my head. I got a chance to meet several people living with diabetes. It was fun. Sitting together at a long restaurant table, seeing everyone else test their blood sugar, use pens or pumps to dose insulin, made me feel less alone. It was like summer camp for grown-ups.

While I was laughing and listening I realized so many people grew up living with diabetes. They found out when they were five, six, eight. l found out I had diabetes at 42. While we were counting carbs and figuring out insulin doses, I realized our initial experiences with diabetes couldn't have been more different.

I wondered what it would be like to grow up with diabetes. The idea that they "didn't know any different," doesn't ring true to me. Kids know more than they let on. Growing up with diabetes in the way must have been challenging.

It made me think of trees that grow through fences.



The fence couldn't stop the tree from growing. Diabetes didn't stop my friends from growing up, either. They grew up around diabetes. They grew up with all the needle sticks and glucose tests. Highs and lows knocked them down, but they got back up and kept going. They share a familiarity with diabetes that I will never have. I didn't grow up with diabetes. I spent the first 42 years of my life without it.

Diabetes arrived in my life like this:



Like a sudden storm, diabetes knocked me over and shocked me down to the core. I don't have strong roots that nurtured me as a child with diabetes. I don't have my parents to shield me from the uglier realities and worries about complications. I have to learn to live after a storm and reinvent how I go about doing this. It is a tough task.

During dinner I realized how differently the same I am from my friends. Adjusting pump settings, trying to determine how many carbs are in the Cajun food and laughing, I can do with everyone. Adapting to a new life with diabetes? That is a different task. Thanks to the DOC, I don't have to face it alone.

Wednesday, September 19, 2012

Speaking Up

My friend Jeff Neitzel posted on Betespora.org about the biggest problem with the iBGStar blood glucose meter. I'll give you a hint. It's not the meter. Check out what he has to say about it here.

Thanks Jeff for speaking up. It matters.

Thursday, September 13, 2012

Love Affair

I’ve enjoyed blogging so much and I’m grateful to everyone who has visited.  I need to confess something I haven’t been brave enough to tell anyone.  My conscience is bothering me.  Sometimes it’s easier to say the truth when I type, so here goes.

I’ve been having an affair throughout my entire marriage. There. I said it. I’m sorry if you think less of me now.  It’s with someone I’ve known since I was a child, many years before I met my husband. I fell in love with him in junior high. We had a stormy relationship throughout high school. We lost touch during college and rekindled our relationship right after I was married.  He left me for a time, but this morning we connected again and it was magic. I didn’t realize how much I missed him until he came back. I don’t ever want to lose my lover again. I know I’m married, but… I love him so much. I cannot imagine life without him.

I think about him constantly, to the point of being distracted when I’m with my husband.  When Steve takes his dog to the dog park, and Evelyn is out with her friends, my lover and I meet in my back bedroom.  Sometimes, we meet late at night after Steve goes to work and Evelyn is sleeping. I’m careful not to wake Evelyn when I greet him.  He calls to me and I must answer.  I can’t help myself. I think Steve suspects, but he hasn’t said anything outright.  I’m trying to be subtle and careful, but it’s only a matter of time before Steve finds out about my lover.  It must be obvious. I can’t hide my desire for him.

My passion for my first love is a consuming fire. I long to touch him and hold him.  His smell is intoxicating. I love to put my nose on the base of his neck and breathe in the scent of him.  Remembering that is making me dizzy with longing. I love how he looks, the deep color of his body. The smoothness I feel under my fingers when I touch him. I love to put my arms around him and hold him close. I love the weight of him against my chest.  He is so gentle, never leaning too hard against me.

Sitting here now, I’m remembering two hours ago when we were together.  Caressing his neck, the feel of his body vibrating between my legs.  The sound of his voice, so rich and warm.  It’s grown deeper over the years, but I still love the sound of it. I cannot imagine my life not hearing him.  His voice is music to my ears.  This evening, our contact was intense.  I rocked my body against his as we moved together in perfect rhythm.  Then we rested.  I put my arm around his chest and leaned my cheek on his shoulder.  I was breathless with joy to be with him again.  Even when we’re silent together I’m contented.

Steve almost caught us.  I was with my lover when I heard the front door close unexpectedly.  My husband came home from work early!  I had my hand on my lover’s bare back.  We quickly parted.  I got lucky that time.  I’ve been careful, but it’s getting harder.  I don’t want to hurt Steve, but I can’t hide my obsession.  I really don’t know what to do about this, and I hope you’re not mad at me.  Even though this must be upsetting, I want to tell you more about my lover...

We met in Chicago.  I was 11.  The first time I put my hand on his neck, I fell in love. I knew we could make music together, and we have.  In many places both in private and in public.  We have made love in my back bedroom, in my backyard, in my parents music room, in churches, and in orchestras.  When I stroke my lover’s strings with my bow, my heart leaps for joy. I confess, my lover’s name is Sir Barclay the Cello. I am so happy he is with me once more.

Hold on.

You didn’t actually think my lover was a man did you?!?

Gotcha!!

P.S. Steve helped me write this.

Wednesday, September 12, 2012

My Cello Is Fixed

Hooray! Thanks everyone who donated, dried my tears, prayed and wished for this day. My cello is fixed and coming home tomorrow. I'm so excited. My mind is full of music and of course... JOY!


Tuesday, September 11, 2012

Where were you when...

Where were you when...

"Where were you when you heard about Pearl Harbor?"
My grandparent's generation.

"Where were you when you heard President Kennedy was assassinated?"
My parents generation.

"Where were you on 9/11/2001?"
My generation.

Where was I? Home. I was starting our homeschool day when my husband called me and told me there was a terrible accident. I ran into the TV room. My 11 year old daughter was eating cereal and watching cartoons. I flicked the channel to the news. She protested for a second, then asked,  "Did something happen?"

"Yes, something horrible happened. A plane..." I got that far before the second plane hit. We sat together on the sofa feeling helpless and terrified. We learned the Pentagon was on fire.

"Mom, doesn't Uncle Jay work there."
"Yes he does."
"Is Uncle Jay dead?"
She looked at me with her tear rimmed eyes. I wanted to tell Evelyn everything was OK. Jay worked in a different Pentagon somewhere safe. Somewhere far away.
"Mom? Is Uncle Jay dead?"
"I don't know."

My husband came home. The first thing he asked was, "Did Jay call?" I shook my head. Steve burst a blood vessel in his eye from the stress. We waited together feeling sick and frightened. It was a full 10 hours before we learned that Jay was safe. Too many others weren't. My heart still aches for their families. Years go by, but I still remember.





Sunday, September 9, 2012

23 Years And Counting

Today is my 23rd wedding anniversary. Wow. If I had a TARDIS and could go back in time to September 9 1989, I wouldn't stop the wedding. I would pull my younger self aside and tell her you can do this.

Hey Steve...


Wednesday, September 5, 2012

Confession

True confession time. I confess that I suck at carb estimating. Unless the box, wrapper, or packaging has a carbohydrate count printed on it, or I weigh my food with a scale, my blood sugar looks like a roller coaster.


Sometimes I think I have done a great job estimating how many carbs are in something and I discover just how wrong I was. That night I had too much snack and not enough insulin. So, the next night I decided I was going to do better. I had the same snack. I estimated the carbs again.

Thursday, August 30, 2012

Hitting A Snag

I've been wearing a Dexcom sensor for a while and I'm pretty used to living with what feels like a Lego block taped to my arm. There is only one thing I haven't figured out. How do I keep it from snagging on my clothes? There is a space between the sticky bandage and the sensor that is magnetically attracted to my clothes. Getting it caught on stuff hurts, but that's not the only problem.

I just got a weird reading from my Dexcom. It said 181. My finger said 118. I couldn't figure out why the numbers were no where near one another. Then I remembered when I was getting dressed after my shower  I yanked the sensor once again. This time I knocked part of the sensor out of its clip. I'm lucky it didn't spawn three question marks.

I'm still new to all this stuff. Does anyone have any suggestions on how to keep from snagging my Dexcom on my clothes? If you have any ideas let me know.

Tuesday, August 28, 2012

Beware of Cuckoo Friends

I got an urgent phone call Sunday afternoon from the eight-year-old daughter of a friend. A shelf in the garage collapsed and hit her mother in the head. I grabbed some stuff and hurried across town. I arrived at the house and found my friend sitting on the couch. She looked dazed. Since my friend is deaf I always bring my iPad so I can type to her. My sign language skills are severely limited.

When I got to my friend's house there were other people there. It was chaotic and a little scary. My friend needed to go to the hospital. I wanted to call an ambulance but that was voted down. I agreed to drive my friend and her daughter to the hospital. I had to pick up her husband along the way. Somehow in the confusion my iPad got left behind on their living room couch.

I took everyone to the hospital and babysat their daughter in the emergency room waiting room. After a few hours their little girl was bouncing off the walls. She needed toys to play with. I wished I had my iPad with me because that would at least give her something to do. So, I got my friend's house keys, drove back to the house to get some toys and grab my iPad.

I unlocked the door, looked on the couch... no iPad. I looked everywhere. No iPad. Where is it? What happened to it? I searched everywhere, but it was gone. Someone stole my iPad while I was taking my friend to the hospital!

The worst part is, my former friends probably know who took it, but they are covering for the thief. I'm not surprised by this, just really disappointed and angry. Have you ever had a feeling you were friends with a loser? I learned the hard way that being friends with losers is not worth it.

There are cuckoo people in this world and they come into our lives pretending to be normal people. But they're not. Common cuckoos look like normal birds. But they are different.
 
File:Cuculus canorus vogelartinfo chris romeiks CHR0791 cropped.jpg  Instead of building a nest for her eggs, the cuckoo flies to another bird's nest. She knocks one of the eggs out and lays a single egg in its place. Then she flies away. The host birds have no idea this invader laid a new egg in the nest, so the parents incubate the cuckoo's egg along with their own eggs. Then the cuckoo chick hatches earlier than the other eggs. It pushes all the unhatched eggs out of the nest until only the cuckoo chick remains. The host parents feed the cuckoo until it reaches adulthood. Then the whole cycle happens again.

People can be like this. I've watched people fly into my life and start taking things from me. They take my time, compassion, energy, money, and peace of mind. The more I give the more a human cuckoo takes. The only way to get rid of cuckoos is to throw them out of my life. This time the final shove out of my life came when my iPad was stolen right out of their house and neither of them thought it was a big deal.

It is a big deal.

It's not JUST about the iPad, which is replaceable at the Apple Store. What was special about that  iPad was my husband gave it to me as a gift. The hardware can be replaced. The gift can't. That moment in time is now gone. I'm sad and angry. I feel betrayed and upset. And they didn't even tell me thank you. They didn't offer to help me replace my iPad. Their attitude was, "Sucks for you." I considered filing a police report, but decided against it for reasons I'm not getting into here.

Cuckoos. I'm not a helpless warbler who has no choice but to look after a cuckoo bird. I can choose to evict the cuckoos from my life. I'm just sorry I had to have my iPad stolen before I remembered, "With friends like these, who needs enemies."

I'm slowly settling down inside. I feel like I ate an electric mixer and it is stuck on high. Team Smith pooled together our money today and we were able to order me a replacement iPad from the Apple Store. My family and true friends helped me through this stressful mess. Joy in the middle of panic. I'm hanging on to it while I kick the cuckoos out of my life. Goodbye and good riddance.

Thursday, August 23, 2012

Another Year Cancer Free

I was diagnosed with thymoma cancer a few days before my 29th birthday on July 5th 1998. Sometimes myathenia gravis is a warning sign for thymoma so my doctor ordered a routine screening MRI. Neither of us expected it to come back positive. I had CT scans at two different hospitals and all three pathologists found the same mass in my chest.

The surgeon called me and said, "I'm looking at your repeat CT scan and I'm seeing tumor. When would you like to schedule surgery?"

This was surreal.  My little girl was playing with a Barbie van, driving it under the coffee table, while I was on the phone talking to this doctor about having surgery. Not a little procedure. A chest cracking, hand me the rib spreader, 9.5 hour marathon surgery. Here's what it looks like *GRAPHIC LINK OF REAL SURGERY* That is what I survived.

The day after surgery my heart swelled. I got an infection. I was so fragile after surgery using a remote control made me cry from the pain. It took a year before I could play the cello. It took two years before I could have a hug without pain. This was a massive surgery. My life is divided into before and after.

On my birthday a few weeks before surgery I told my mom I felt like my life depended on rolling a Yahtzee.  The only thing I wanted for my 29th birthday was a 30th birthday. Well, I got my birthday wish. I've had 14 birthdays since surgery. Here's to 14 more! Another year cancer free. YAY!

Tuesday, August 21, 2012

The Road

Lately the road I am traveling on feels cold, lonely and bleak. I didn't want myasthenia gravis. I didn't want diabetes. I don't know how to handle all this.


The road ahead feels threatening. Thinking about it makes me worried and exhausted. Sometimes I want to quit.


But, then I see a bend in the road. If I follow the bend in the road, if I keep my wits about me and don't surrender, the road will lead me to a quieter place where beauty is found.



Wednesday, August 15, 2012

B is for...

B is for Breakfast, the most important meal of the day. B is also for Bolus, which I forgot to do Before I ate Breakfast. B is for BG which spiked above 300 mg/dl


Oh man! Today felt like a roller coaster. I have a terrible headache. Ow! Today I Blew it.  B is for Bad Day.

Tomorrow morning I am going to Be on top of things. I will Bolus and then eat Breakfast. Then my BG will Be just fine. See, I can Be taught. Sometimes I just have to learn the hard way. Like today. Ow!

Getting So Excited

My cello is healing nicely at the repair shop. I am thinking about all the music I want to play. Bach, of course and this lovely Etude by Popper. It's my favorite Popper etude. Etudes are study pieces, kind of like musical homework. Popper Etude Number 36 always was fun to play. Listen:



Of course that was Janos Starker, one of the greatest cellists ever. I am not Janos Starker, or one of the greatest cellists ever. I can't play that etude as fast, or smoothly, or that perfectly. He makes it sound so easy and it's not. Listening to someone who can play it so well makes me smile inside.

Thinking about playing my cello again is making me happy. Popper Etude Number 36 is a joy benchmark in my life. Soon, very soon, I'll be playing it again. Slowly. With a metronome. But, playing nonetheless! Wow! I can't wait!

Tuesday, August 14, 2012

Going in Circles?

This made me sad. I went to the grocery store this afternoon and the route took me near Paula's house. I broke down in tears as I thought about how she died searching the house for her little boy. I switch from feeling sad to angry and back to sad. It's easy to feel like I am trapped and just going in circles. Grief is like that for me, whirling around in seemingly endless circles.

A lesson I learned after my mother died was that grief does whirl me in circles, but that doesn't mean something is wrong. I'm not spinning around going no where. I am spiraling my way forward. All of that whirling has a purpose. It's leading me forward toward a more peaceful place.

I'm spiraling my way out of depression right now. Even though it feels like I'm going in circles, I'm not. I'm moving forward in a spiral. That is comforting me lately.

I'm still facing writer's block during my daily writing time. I am keeping my journal and keeping my daily commitment to try and write something. What I end up writing is compost and that is frustrating me. I need to remember that I am spiraling my way out of writer's block. Every day leads me forward.

So many things block creative flow. One thing that releases it is giving myself permission to be lost and allow myself the freedom to spiral my way out. Lately I am so full of different feelings, thoughts and input that I haven't been able to grow hungry for writing. My mind is full. There is no room for writing. I'm picturing myself dropping the extra baggage down the stair well. I don't have to take this stuff with me. All I have to do is trust that there is an end to the spiral. I need to keep on moving forward toward a more peaceful place.

Thursday, August 9, 2012

A Whole New Angle

After several bent cannula disasters and rapid high blood sugars, I got frustrated with XPU the pump. My blood sugars were all over the place. Maybe this pump wasn't such a good idea.

I wondered if I should go back to multiple daily injections. I was getting dressed and I forgot to disconnect my pump. So I yanked my pump set because my tubing was 23 cm long. Yanking my pump set leads to bent cannula disasters which leads to Dexcom double arrows up in the middle of the night.

So I did some thinking. Maybe straight sets aren't working for me? I wonder if an angled set would work better. Dexcom is angled after all. And what about tube length? Should I try a longer tube? I talked with Animas and got sent a few samples.

I unwrapped my first Inset 30 set. I took one look at the introducer needle and freaked out.The cannula is 13 millimeters. The introducer needle is even longer. That is one long needle! The last thing I wanted to do was stick that in my body. No way!

I freely admit the Inset 30 scared the pants off of me. Maybe this angled set idea wasn't so smart. I read the instructions. I read them again. I surfed the internet for videos of people inserting the thing. It took me a few hours to work up the courage to pull the trigger and fire that scary long needle into my skin.

One. Oh man. I can't do this. Wipe sweat off forehead.

Come back try again. One. Two. Oh no! Oh #$%! Deep breath!

One. Two. *Wince* Three. Squeeze the buttons... SNAP!

Oh.

That's it? That didn't hurt. What was I worried about? I changed my set and got my pump refilled with insulin. I'm getting faster at this. I don't feel like I have oven mitts on my hands anymore. Filling my pump is as routine as tying my shoes. Practice may not make perfect but it sure makes things easier.

It's been a week using angled sets and longer tubing. I think I've fallen back in love with my insulin pump. My numbers are good. I'm glad I decided to give my pump another chance. Right now I'm looking at pumping from a whole different angle.

Tuesday, August 7, 2012

When Insulin Pumps Attack

I was cleaning the living room and listening to my iPod. Without thinking, I put my iPod in the same pocket as my insulin pump. The headphone wires got tangled up with the pump tubing. They started playing Cat's Cradle with me in the middle.


Note to self: When using an iPod and an insulin pump keep them in different pockets next time!

Sunday, August 5, 2012

Cello = Joy

My cello is in the shop. In a month my cello will be back with me and I will play Bach with my own hands. Just thinking about playing again is making me feel...



Cellos rule. Cellos add joy to life. Seriously. Did you ever notice which instrument begins Ode to Joy from Beethoven's 9th? Scroll to 57:48 and listen for a bit.



Without the cellos there would be no Ode to Joy. No cellos, no joy. Know cello, know joy.


Wednesday, August 1, 2012

Having A Dry Spell

Illinois is having a serious drought. The lake where I take walks with my husband has dried up.




Droughts are stressful, both outside in the world, and inside the spirit. I've been having a creative drought lately. I've tried a lot of different things to fix it:

  • Forcing myself to write.
  • Not forcing myself to write.
  • Using writing prompts.
  • Setting appointments for writing.
  • Rewarding myself for writing.

None of these proved effective. I'm having a dry spell.  I haven't been able to determine if I'm depressed because I'm not writing, or if I'm not writing because I am depressed. Admitting this feels like defeat. Depression always feels like defeat, like I did something wrong and now I deserve to feel shriveled up. Depression lies.

Depression forms a dark mist around me. I was depressed before Paula died. I am even more depressed now. I feel as if someone took a massive garden hose and sprayed all the color out of my world. I flip between feeling profoundly sad and intensely angry and back again. Once a murder was an exciting way to begin a story. Then I felt Paula's mother Gina's trembling embrace. Then I felt her tears mix with mine on my cheek.

This is Joy Benchmarks. Joy is happy, dammit! Joy Benchmarks is place where I search for joy in the smallest of things and share my discoveries with you. Right now joy is hard to find. Grief is not fun to talk about, but it is part of being human. Please bear with me as I sort through all this. 

Illinois is having a serious drought. I feel like I am having a serious drought as well. Perhaps I need to be less hard on myself. Perhaps I need to recognize that seasons have a flow, and dry is one of those seasons. I want to feel a rush of creativity. I want to be wide awake and full of life. I want to have trouble sleeping because I want to write. Now I sleep too much and write too little.

I can't give up. I have to believe I will create again. I need to believe that creative flow will come, just like I trust rain will replenish my favorite lake. Creativity will replenish my spirit. All I have to do is wait.

Friday, July 27, 2012

Technical Difficulties



The Dexcom read 71 with a rapidly falling blood sugar. My meter read 152. Which is right? What do I do? I sat there laughing at my technology for a while. At least one of these devices was completely wrong, but which one? Could it be both devices were wrong and my blood sugar was really 124?

I tested and re-tested. Dexcom fell to the 60's while my meter stayed almost the same. I Tweeted my conundrum and got some replies from the DOC. Maybe split the difference? Dexcom buzzed again. It took me a while before the obvious solution came to me: Search your feelings, Luke. Forget what the meters were telling me. What was my body telling me?

My heart was beating faster than normal. I felt sweaty. I felt a little hungry. I felt that odd empty sensation in my chest that I get when I am going low.

I felt... Low. 

I counted out 15 Skittles and treated for a low. Fifteen minutes later my heart wasn't pounding. I didn't feel sweaty any more. The empty odd sensation was gone. Maybe Dexcom was right and my meter was wrong? Maybe my meter was right and my Dexcom was wrong? I'll never know the answer, but I think I learned an important lesson. My own body trumps technology. Next time I get ambiguous readings, I'm going to shut my eyes and tune in to how I feel.

A few minutes ago my Dexcom read 111. I tested. My meter read 111. W00t!  Thank you for your patience. We now return you to your regularly scheduled life.

Wednesday, July 25, 2012

One Year With Diabetes

Today is my Dia-versary. A year ago today I was in the hospital. I had an antibiotic resistant infection in my tooth and a blood sugar of 380. I can't say it was the worst I have ever felt, because it wasn't. The day after cancer surgery was the worst I ever felt. Still... It was tough.

Nurses came into my room and explained things about diabetes. Several of the nurses had diabetes themselves, so they were helpful. I met the CDE and she explained even more. I felt like I had mittens on my hands when I held an insulin vial for the first time. I didn't practice injections on a pillow or an orange. I gave myself my first injection with a syringe. It was terrifying, but I did it. And I did the next one, too.

I learned to use a glucose meter. I learned to pick food off the hospital menu using carb choices. My meals were limited to 5 carb choices. I think about that now and just laugh. 75 grams of carbs at one meal is rare now. In the hospital I worried a lot. I worried about Thanksgiving and Christmas. Oh and Halloween. Was I doomed to a life choking down sugar-free food? Did I have to trade cookies for kale and cupcakes for tofu?

I spent a week in the hospital before I was finally well enough to come home. After greeting family and pets, I stood in the kitchen and opened the pantry door. Noodles. Popcorn. Cans of this and that. How many carb choices is a bowl of cereal? How many carbs are in this thing? Can I eat that? What about these? I felt like I was dropped inside a dangerous place, blindfolded and abandoned, armed only with my meter and my insulin pen.

In the hospital the CDE kept talking over and over about low blood sugar. I thought she was kidding. My blood sugar was never below 200. I didn't have to worry about lows. That was never going to happen to...

Oh.

Oh!


WHOA!

My first low felt like someone very large squeezed my head. I sat in the kitchen and followed the rule of 15's. Fifteen grams of carbs and 15 minutes later I felt better. When I was low I knew how to do. But what was I supposed to eat for dinner? And breakfast? And lunch? How was I supposed to deal with diabetes all day every day?

I was afraid and alone. Until I found the DOC, The Diabetes Online Community. I found a network of people who live with diabetes. I found bloggers who write about diabetes. I found people who have had diabetes for more than 20 years. I wasn't alone.  I didn't have to live with this alone.

So I don't.

http://www.mydiabeticheart.com/wp-content/uploads/2012/06/meetup-group1.jpg

Instead I am part of a community of people living with diabetes. Both online and in real life I have the support I need to thrive. And I am thriving! I don't eat kale instead of cookies, and tofu instead of cupcakes. I eat a healthy diet that has room in it for cookies and cupcakes. And caramel lattes, too! I look after myself and surround myself with other people who are doing the same. We all have to life the D-life. We might as well live it together.

I want to say that every day my blood sugar is stable and always looks like this:


But I would be lying.





No. I don't live a perfect life with diabetes. I live my life with diabetes. And my life right now is running circles around how I felt last year. A whole year with diabetes. I made it!  Yahoo! If you have diabetes, you can do it, too.

Monday, July 23, 2012

Goodbye Paula

Paula Morgan died on Sunday. The news hit me like a fist in the chest. Paula's family lived on our block for many years. Paula was six when my family moved here. She was one of the neighborhood little girls who played on the swing sets in our backyards. She ate ice cream from the ice cream truck with my daughter and the other neighborhood kids. I watched Paula grow from a little girl to a young lady before her family moved away.

She struggled as a young adult, as young adults often do. She moved back into her mother's house and brought her young son with her. Early Sunday morning someone set fire to her mother's house. Paula's mother was out of town. Paula and her little boy were inside. Nicholas got out safely. Paula didn't make it. Now her mom is grieving the loss of her only daughter and her home.

This wasn't a tragic accident. Someone murdered Paula Morgan. Someone deliberately destroyed her mother's home. I can't believe this is real. In the middle of my grief is a coiled spring of anger. Police have a suspect in custody. But it doesn't undo the damage.

Paula who ate potato chips during the block party. Who I handed a Coke and a Popsicle. Who I talked to and laughed with. That Paula. Our Paula. Someone killed her on purpose! I don't understand. Why would anyone do that? Even if I knew why it wouldn't make any sense. Making sense of nonsense is hard to do.

Today is Paula's birthday. She would have been 25. I'm remembering her today.

Happy birthday Paula. I'm glad I got to know you when you were little. I close my eyes and I still see you smile.  You taught us to live life, laugh and have fun. Thanks for that. It matters. I'm sorry your light was taken from the world. It's a little darker without you shining here. Goodbye Paula Rae. Rest in peace.



Paula Rae Morgan
 July 23 1987 -- July 22 2012




Disclaimer

I am not a doctor. I do not have a medical degree. Nothing on this site qualifies as medical advice. These are lessons I'm learning at the University of Catastrophe. What I find to be correct answers in my classes may not be the right answers for you.

If you are enrolled with your own major at the University of Catastrophe, please consult your doctor, therapist, attorney, auto mechanic, veterinarian, plumber, dietician, arborist, acupuncturist, manicurist, mother, local dairy council, shoe shine boy, or other equally qualified professional, for advice and assistance.

If you email me your personal information will not be shared without your permission and your email address will not be sold. I hate spam. Even with eggs.

Search Joy Benchmarks

Blog Archive

  © Blogger template Webnolia by Ourblogtemplates.com 2009

Back to TOP