Wednesday, April 22, 2015

#IWishPeopleKnewthatDiabetes


This hashtag was Kelly's idea. I learned about it on Facebook and decided I needed to participate.

I wish people knew that diabetes...

Isn't a punchline for a joke.
Diabetes is just another way of saying "I became such a fat bastard I can no longer be trusted with sugar".

Official food of the 2012 Olympic Games: McDonalds

Official drink of the 2012 Olympic Games: Coca Cola

Official disease of the 2012 Olympic Games: Type 2 Diabetes

And on they go. 
I wish people knew that I couldn't have avoided diabetes. I couldn't have avoided myasthenia gravis. I couldn't have avoided thymoma cancer. I just couldn't do anything different with the f*cked-up body I have. My body is falling apart and it takes all of my courage and strength just keeping it together. Assuming I contributed to having diabetes is unfair. Assuming people who have diabetes brought it on themselves is untrue and unfair. Type 1, or Type 2, or various assorted diabetes subtypes, all suck. No one deserves something that sucks as much as diabetes.

How I wish the people who make jokes about diabetes could live with it. Dinner is ready. It's really hot and I'm so hungry. I think I'd like to sit down and calculate how many grams of carbs are in this. And then stick a sharp lancet in my finger and test my blood sugar. And then do an algebra problem in my head to figure out how much insulin to bolus. And then deal with the sting from the insulin going in too fast. And... now dinner is cold.

Oh, that is hilarious. Isn't it? No, it's annoying. Diabetes jokes lack compassion, and heap guilt and blame on people who live with diabetes. They make it sound like it's fun. It isn't. Next person who tells me one will get a free blood sugar test. I'll make sure to crank my Fastclix lancet to depth 5, first. 


Monday, April 20, 2015

Life After Dexcom

Well, since my insurance isn't covering Dexcom, and I cannot afford to pay for it out of pocket, I had to let go of my Dexcom. A few days ago, I took the plunge and ripped off my three-week-old Dexcom Sensor. It was strange at first, like something really important was missing. I found myself pulling my Vibe pump out of my pocket, and seeing a blank blue line where my Dexcom graph should be. It was stressful, like having my cell phone taken away.

After a few days, I realized just how often I looked at my screen. Check the screen, BG is 114. 10 minutes later... Check the screen, BG is 119. 15 minutes later... Check the screen, BG is 111.

Once I took off Dexcom, I felt liberated. I thought about diabetes so much less! Instead of getting constant feedback, I have my finger sticks and that's it. It was weird at first. Now, I am getting used to it.

Also, for the most part, I know my daily BG patterns. I know that when I wake up in the morning, insulin will be less effective than an eye dropper full of water on a grass fire. Dawn phenomenon blows. Around 11:00, that goes away and my insulin sensitivity kicks into overdrive. Between 11:00 am and 5 pm, my BG is going to be in the 70-115 range. I know that between 5 pm and 11:00 pm, my BG is going to be elevated from dinner, and then drift down into the 120’s. That is my typical daily pattern. If I eat more carbs than usual, I’ll test more often and keep an eye on it. If I feel funny, I’ll test and see what’s up. I do miss the trending, but I can substitute for it by testing again in half an hour or so.

The main thing I'm doing to look after my diabetes is keeping consistent with my food. Taking care of my diabetic dog means feeding her the same foods, in the same amounts, twice a day. Keeping things consistent makes looking after April's diabetes much easier. After a few weeks of looking after April, I realized I can do the same thing.

I eat the same thing for breakfast every day. I eat the same lunch every day. I've been doing this for several months now, and I don't mind at all. Choosing to eat the same thing every day has eased the blood sugar roller coaster. I know that breakfast will raise my blood sugar x amount. Lunch will raise it y amount. I have less lows because I'm not chasing an unexpected high with more insulin, and then crashing because my insulin sensitivity is in overdrive mode and I bolused too much. I know that my worst lows come in the mid-afternoon, and I'm ready for them. Eating the same meals twice a day has made my life much easier.

Truthfully, if there was a Human Chow, 100% nutritionally complete, delicious, kibbles for people, I'd eat Human Chow twice a day and be fine.

Photo Source
Some days, I wish a genius would come up with Human Chow. Whatcha having for breakfast? Kibbles in a bowl. Yum. Whatcha having for lunch? Kibbles in a bowl. Yum. Ooh, it's cinnamon flavor. My favorite.

My only variables are dinner and (ahem) after dinner snacks. So, I keep my meter handy at night. My only problem with testing more is I have more trash. I keep missing the little trashcan on the floor and my little strips are getting everywhere. I got myself this little desktop trashcan on Amazon to put on my bedside table. I hope it helps me keep the mess down.

The only scary thing about giving up Dexcom has been sleeping. I relied on Dexcom to wake me up if I was low. And it did. Over and over again. Fear of going low while sleeping is still difficult to deal with.

I had a six hour long low in my sleep on chemo day. Seeing that graph scared me. How often does that happen? Without a Dexcom, I don't know. Not knowing scares me, too.

Waking up, feeling low, sweaty and shaky, scares me. Without a Dexcom, I don't know how long I've been low. I don't like that, either. I'm doing what I can to avoid going low when I sleep. This part of losing my Dexcom, I don't like.

However, all in all, weirdly enough, I don’t miss my Dexcom. Funny! I was panicking when I found out that my insurance didn't cover it. Now, I don't miss wearing a sensor every day.


Instead of wearing a Dexcom sensor every day, I will put one on a few days before we go on a trip, so it can settle in and start working right. I can see how Dexcom would be useful while traveling, simply because I will be eating weird things. At home, my life is a fairly predictable pattern. And I like that. I am finding peace in simplicity these days.



Maybe it's because we've been spring cleaning around here, and I have been asking myself, "Do I really need this?" that I've found it somewhat refreshing to let go of my Dexcom. Throwing away things that I don't use, don't need, or don't like, has brought me peace. But.. that's another post.

There is life after Dexcom. Just like there is life after a diabetes diagnosis. And life is good.

Wednesday, April 8, 2015

Decisions Decisions

I got an Animas Vibe pump a few months ago. Not having to carry a Dexcom receiver and my pump has been a welcome change. However, on Monday night, I had a six hour low while I slept.

It was chemo day, and after taking anti-nausea drugs that make me groggy, I slept all morning. Waking up and seeing I was low upset me. Waking up and realizing I was low for six hours, made me wonder why I even bother having a Dexcom.

The alarm is too short. A quick run through of Fur Elise, and then silence, followed by soft beeping, is not loud enough to wake me up. The pump is wrapped under blankets and the vibration isn't strong enough to wake me up.

What I'd like to have is a Night Mode switch. Make this pump scream like a banshee. LOW! Wake Up! Not a muffled Fur Elise and a gentle vibration that cannot be noticed under blankets.

I need my alarm to warn me of lows overnight night. That's why I have a Dexcom sensor. Well, not for long. My insurance company isn't covering Dexcom. So, I have to decide if I want to pay out of pocket and continue using it, or not.

Given that my Vibe Pump doesn't wake me up, is finding out I was low for the past 6 hours helpful? I felt upset the second I saw that long blue line of failure. I've used Dexcom for four years and I appreciate the extra data. It's better than running a basal test and waking up every few hours.

Decisions. Decisions.

For the most part, my pump settings are spot on. Because of Dexcom, I have an idea how high my BG is going to go after I eat. I've learned to bolus for coffee.  Dexcom helped me spot a rise in blood glucose that happens at 10 pm, whether I've had a snack or not, no matter how many carbs I ate during dinner. Around 10, my blood sugar spikes. Well, it did. Until I changed my pump's basal settings at 8 pm and made that spike disappear. Those trends, trends I can act on, have made a huge difference in how I treat my diabetes.


Fall alerts have helped me head off disaster, too. Same with rise alerts that let me know my pump has gone haywire. However, when I saw that long blue line of failure -- six hours of untreated low blood sugar -- I wondered if Dexcom has given me a false sense of security. What I trust it to do is wake me up when I'm low. Now I found out, I can sleep through alarms. Now I am wondering if Dexcom is worth it or not.

Can I manage my diabetes without a Dexcom? Have I learned enough from this tool to give it up? Should I fight my insurance company? Should I quietly surrender? Should I save up for sensors?

Decisions. Decisions.

My pump has automated much of my diabetes care. The ever changing basal rates keep me steady most of the time. I've got my corrections figured out. I've got my insulin to carb ratios figured out. I know how food is going to impact my blood sugar, for the most part, anyway. Still, there are surprises, like a six hour long low.

Decisions. Decisions.

 I made a good decision a few months ago and changed neurologists. My new doctor increased my chemo medication. More evil antibodies are dying ever week. My arms work now. It's an amazing change. I have so much more energy. During the last few weeks I was able to put new tile in the bathroom. I was able to grout all the tiles. I painted the ceiling and the walls. I even put in a new bathroom floor. My arms move, because I made a good decision and changed doctors. I'm wildly happy about this decision.

Deciding to give up my Dexcom, or pay out of pocket, feels like a lose/lose. However, there are numbers between zero and one hundred. There is more than off or on. I can pay for a few boxes of sensors a year, but not wear it all the time. Balance matters to me. I always seek balance in my life. It keeps me from being depressed and anxious about my health.


If anyone has a spare sensor and wants to mail it to me, contact me at thecellochick(at)gmail.com Maybe we can make a trade. One thing I've learned is I'm not alone in my decision making, and that matters to me.

Let me turn this over to you...

If you had to pay out of pocket for Dexcom, would you do it? Would you give it up entirely? Or would you rely on finger sticks and only use Dexcom for basal testing? Leave a comment, or send me an email.


Wednesday, March 18, 2015

Please Continue to Hold...

(Current estimated wait time is... 8 minutes.)

I'm on hold for the third time today with the third business. All I want to is order a Dexcom transmitter. My warning went off on Monday that my transmitter battery is almost dead. Now, I knew that my transmitter was getting old, so a month ago, I contacted my DME supplier, their name rhymes with DredgeShark, about getting a replacement.

Two weeks later, I found out my order was canceled. Why was it canceled? I called DredgeShark, and they didn't know why. They said they would get to the bottom of it and send me my sensors and transmitter.

(Please continue to hold and we will be right with you...)

I just called DredgeShark, because my transmitter is going to turn off any day now.  They told me my insurance company is no longer contracted with DredgeShark to provide Dexcom sensors.

Why didn't they tell me this three weeks ago? What am I supposed to do now?

I called my insurance company.

(Please listen carefully as our menu options have recently changed.)

My insurance company agent had no idea what a CGM was. After putting me on hold for half an hour, I suggested calling Dexcom directly to find a company to help me get sensors and a transmitter.

(All agents are busy assisting other customers.)

So, right now I am on hold with Dexcom. I really hope I can go directly through Dexcom.

Tick tock. Tick Tock.

OK, I talked to Dexcom. Now I have to wait and see if my insurance company will let me order supplies directly from them. I sure hope so. 

DredgeShark has become a nightmare. I ordered insulin pump sets online a month ago, and DredgeShark deleted the order instead of processing it. So, I ordered on the phone. Did they send me my supplies? No. Instead I got an email telling me I had to fill out forms for Medicare before my supplies would be approved. I'm not using Medicare! So, I called them back a third time with my information and now once again it is processing. Maybe. I hope.

This sucks!

I am running out of sets. I'm frustrated beyond words. I need insulin pump supplies to function. It's not like I am ordering books, or a new cell phone case. It feels like my life is on hold.

(Your call is important to us. Please stay on the line and a customer service representative will be with you shortly.)

(This call may be monitored for quality and training purposes.)

My Dexcom is going to shut down in a few days when the transmitter dies. And there's not a damn thing I can do about it.

(Please continue to hold while we play irritating music in your ear. Thank you.)




Monday, January 26, 2015

Dog Diabetes VS My Diabetes

When April was diagnosed with diabetes last year, I was surprised how similar her diabetes is to mine.

A normal blood glucose range for a dog: 80-120
A normal blood glucose range for a human: 80-120

Low blood sugar in a dog: 70
Low blood sugar in a human: 70

Amount of glucose needed to raise April's low blood sugar: 15-30 grams (or more if epic low)
Amount of glucose needed to raise my blood sugar to normal: 15-30 grams (or more if epic low)

April's blood sugar after stealing a sandwich: 300 or higher
My blood sugar after eating a sandwich and (ahem) forgetting to bolus: 300 or higher. (Not that I ever forget to bolus.)

Symptoms of high blood sugar in a dog: Excessive thirst, peeing by the back door, weight loss.
Symptoms of high blood sugar in human: excessive thirst, peeing all day long, weight loss.

Symptoms of low blood sugar in a dog: stumbling, glassy eyes, confusion, shaking.
Symptoms of low blood sugar in a human: stumbling, glassy eyes, confusion, shaking.

Treatment of low blood sugar in a dog: vanilla frosting and mini donuts.
Treatment of low blood sugar in a human: glucose tablets. (Donuts? Baklava? Cookies? Cake?)

One big difference is April uses only insulin N. I get Reli-on brand from Walmart because it is 25.00 a vial. My insulin is covered by my health insurance. I use NovoLog. April has two shots a day. I use an insulin pump.

April gets 21u of NPH insulin twice a day, for a total daily dose of 42u. Because I am a human, and don't eat kibble out of a dog dish, I get a different dose of insulin every day. Sometimes my total daily insulin dose is less than my dog. Sometimes I get the same amount of insulin as April. (January 5th was the last time we had the same total daily dose.) When there is Chex Mix in the house, I use a lot more insulin. April is just as tempted by Chex Mix as I am, but she lacks opposable thumbs, and if we put it on a high shelf, she can't get at it. Except for when she finds a bowl on the table. Then, all bets are off. There are times when I wish I could correct April's high blood sugars, but since she is on NPH twice a day, I can't correct. All I can do is try to control her food.

April eats one can of dog food, and one scoop of dry food, twice a day. Except for when she doesn't. You see, April is a weimaraner. Weimaraners can do this:




I am so incredibly glad that is NOT MY DOG. However, while I was writing I heard a loud ripping, crunching sound in the living room. I went in. April stole a brand new bag of corn chips and managed to rip open the bag. No! Those are Dad's chips! Crazy dog!

Look, I try really hard to keep April eating only what she is supposed to, but April is still a weimaraner. Sometimes April eats cat food. Sometimes she gets in the garbage. Sometimes she steals a sandwich off the counter. This makes her blood sugar go bonkers, because I can't just count the extra carbs and cover them with extra insulin. Not being able to correct makes me unhappy, but I am learning to shrug it off.

April is 12. If I test her blood sugar six times a day, count all her carbs, and micromanage her diabetes, she will probably live another 18 months to two years. If I roll my eyes and laugh when she gets in the garbage, eats random snacks, and steals sandwiches, April will probably live another year and a half to two years. Realizing this has helped me ease up and worry less.

Why was April low over the weekend? I have no idea. Lows happen to both of us. So do highs. We both do our best to live well with diabetes, and in the end, that is all that matters.

Sunday, January 25, 2015

Thank heaven for 7 Eleven

I was on the bed reading. My husband came in with April the diabetic dog. Steve said, "April has been a little wobbly." I looked down on the floor. April had stumbled and fallen. Steve helped her stand. She fell again.

April is 12-years-old, which is 89 in human years. Maybe she had a stroke. Or maybe... Steve grabbed her glucose test kit. I tested her blood sugar. It was 27 mg/dl (1.5 mmol)

 That is sugar reaper territory. April wasn't even shaking anymore. She was just lying limp on the couch. I looked at the number, and at Steve. Both of us said something that rhymes with, "Puck! Goalie mitt!"

The dog needs carbs. Lots of carbs. Now! I searched the kitchen. What do we have? Caramel sauce? No. Orange juice? No. Smarties? No. Glucose tablets? No. Honey? No. What can I give the dog? I found a Poptart. 35 grams of carbs. OK. OK. This will help. I ripped open the wrapper. Chocolate! Crap!

Then I remembered, on the dog medicine shelf was a tube of green cake frosting. It was almost empty. Five grams of carbs per teaspoon. That's not going to be enough.

"Steve, go to 7 Eleven and grab some powdered sugar donuts."

He grabbed his coat and left. I sat on the couch and squeezed cake frosting into the dog's mouth. April perked up a little and licked the frosting. The tube was nearly empty when Steve came home with donuts. April didn't bark when he came home. She just stayed on the couch looking limp and glassy-eyed.

My husband ripped open the package and handed me a donut. April gobbled it. And she gobbled the next one. She ate five out of six donuts. I gave part of the last donut to Honey, our non-diabetic dog, because she was standing beside me drooling.

Within half an hour, April was up and romping around the house. We tested her blood sugar a second time and it was 127. Crisis averted. The Sugar Reaper left.

This experience reminded me once again how important it is to have carbs ready to go, both for me and our dog. Now we have a new tube of vanilla cake frosting, and another package of 7 Eleven Powdered Mini Donuts, on the shelf. We're ready for the next time the dog is low.

Speaking of low, Dexcom is telling me that I'm low. What the puck? Hang on a sec while I confirm. Yep, I'm low. Finger says BG now 68. Weird. I did not expect that. I was 257 about an hour and a half ago.

We're not going to name names here, but someone had eggs and waffles for breakfast and (ahem) forgot to bolus ahead of time. I remembered to bolus about 10 minutes after breakfast, which is why my BG was only 257 and not 357. Did I just write ONLY 257? That, right there, says a lot about my life with diabetes. Facepalm.

After eating waffles, my pump, XPU Mark II, calculated I needed a boatload of insulin. I used my pump, gave myself an amazingly large bolus, and here I am low an hour and a half later.

Move over April. It's my turn to eat some medicinal donuts. Who knew 7 Eleven could save someone's life? Thank heaven for 7 Eleven.

Saturday, December 20, 2014

Researcher Needs Volunteers

 If any of you are dealign with diabetic kidney disease, a medical research company could use your help.

Here are the details:

My name is Laura Greer, I work with The Henne Group, www.thehennegroup.com, a small medical research company in San Francisco. We are contacting you to see if you can help us with our new project. We are looking for people, patients who are managing Diabetic Kidney Disease. We will be conducting in person interviews in different cities across the US. starting on the third week of January and participants will receive $100 as a thank you incentive to compensate for their time and effort.

No attempt will be made to sell anything or influence their thinking, and all participation is confidential.

If you think you can help us to spread the information of this study please feel free to post this email or to contact me by phone or email. If you know anyone who is interested, they can contact us on our phone number 415-348-2986 or 877.737.5782 x 286.

People can see if they qualify to do the study by taking this survey:
http://surveys.thehennegroup.com/survey/intweb.dll/project/cawi/1416_DKD_CAWI

My direct line, if you have any questions is 415.348.2918
 

Friday, December 12, 2014

Did I remember or forget an insulin shot?

When it comes to looking after my own diabetes, I have my pump to help me. I can look at my history and see if I remembered to bolus for that chocolate doughnut. Remembering if I gave my dog her insulin shot is becoming a problem.

I knew the day April was diagnosed, giving her insulin would become a routine. Routines are good and dangerous. My typical morning begins the same way:

1. Get up and take care of business.
2. Take April the diabetic dog and her best friend, Honey outside.
3. Come back inside with the dogs and clean up any puddles April left overnight.
4. Greet daughter while she feeds her cat, Cyclone.
5. Feed Fresh Air and Sunshine, my twin cats
6. Feed April
7. Feed Honey
8. Give April her shot--21u NPH.
9. Drive Evelyn to work

Unless, Evelyn has to be at work early. Then I do steps 1-3. Skip ahead to step 9, add a step 4.5 and feed Evelyn's cat, Cyclone. Then I do steps 5-8.

This morning I took my daughter to work early. I came home and fed all pets. Did I remember April's shot? I think I did. Wait, did I? Oh no, I can't remember. Open fridge, find an empty syringe. OK, no I didn't give April her breakfast insulin. Give April her shot. Whew.

Then there is Saturday morning. Saturday morning I sleep in, and my husband feeds April and gives her a shot. Unless, he is napping on the couch and I don't want to disturb him and then I give April a second breakfast and a second shot. OK, that happened once, but wow did that suck.

Do you know what a dog looks like with a blood glucose of 22? I do. Shaking, trembling, stumbling, glassy-eyed and very scary. Did you know a dog will not eat glucose tablets, or drink juice, or eat Smarties, or caramel sauce? We stuffed her mouth full of vanilla frosting. Followed by more vanilla frosting and peanut butter once her BG stabilized. That was so scary. Never again.

Steve and I now have a system in place on weekends. I assume he gave April her breakfast and insulin, unless he says otherwise. So, double insulin doses won't happen again. 42u of NPH at once scared the crap out of us. Morning pet feeding is a daily routine for me and it's hard to skip feeding April on the weekends. Steve reminds me and that helps.

Honey and Sunshine 2013
In the evening, I feed all pets again in the same order: Cyclone first, Fresh Air and Sunshine second, April is fed third and Honey is fed last. The hierarchy keeps things peaceful. Dogs are pack animals. Animals higher in status eat first. Humans-->cats-->dogs is how we avoid any food aggression in our home. I can feed a cat that is sitting on top of a dog, and not worry the dog will snap at the cat. There is only one alpha bitch in our house: me. Everyone knows their standing, and everything is peaceful between pets.

Remembering insulin is the only pet problem I have. I think I will start marking syringes with blue and orange marker. Blue for breakfast, orange for dinner. That way I will know at a glance if I gave April her insulin. If I see a syringe with a blue line on it in the fridge, I forgot April's breakfast insulin. If I see an orange mark, and it is morning, I remembered and replaced the syringe for dinner time.

This could be helpful for people, too. If you use syringes, marking them with marker could let you know at a glance if you gave yourself a shot or not. Timesulin caps for insulin pens are a good idea, too. I use the history function on my pump every day to keep myself on track.

April doing her thing in 2014
Looking after a dog with diabetes requires some extra patience. High blood sugar leads to excessive thirst which leads to puddles in the house. On the plus side, keeping April's blood sugar steady is easier than it is for people, because she is content to eat the same food at every meal. Except sometimes she steals bread off the table. Or gets in the garbage. Still, most of the time we have a good balance and I am grateful.


April is a normal dog who happens to have diabetes. We're doing all we can to look after her. She will be 12 in February, which is old for a weimaraner. She is about 89 in human years. April has two autoimmune diseases: Addison's disease and type 1 diabetes. Both April and I have multiple autoimmune diseases and we both do what we can to deal with it. April hasn't let it wreck her life. I won't let it wreck my life either.

Since I mentioned my pets, I think it's fair to add a few pet pics. Here are the Smith Family kids:


 Cyclone, my daughter's cat. (She pays for his food and vet bills. Her pet, not mine.)


A good mouser and a good boy. I love my grand-cat.


Fresh Air and Sunshine are my cats. Fresh Air is wearing a tuxedo. 
Sunshine is all black and softer than mink. They are both rescued barn cats and littermates. 
They came to live with us in November 2013.
 
 
 We call them "the twins." If you took a gumdrop, dipped it in honey, and rolled it in powdered sugar, it would be no where near as sweet as these two cats. They are amazing friends and I love them dearly. I've had cats for 25 years. These two may be the best cats I've ever known. Fresh Air purrs when he sees me. I don't even have to pet him and he starts purring. Sunshine makes me laugh because she's a clown and kind of dopey in a sweet sort of way.
"There are two means of refuge from the miseries of life: music and cats." - Albert Schweitzer

Honey. My retired service dog, chemo buddy and all around best friend. She is much younger in this picture. Honey just turned 12 in August.


The one and only April, my husband's dog and our loyal friend.


"When the Man waked up he said, 'What is Wild Dog doing here?' And the Woman said, 'His name is not Wild Dog any more, but the First Friend, because he will be our friend for always and always and always.'" —Rudyard Kipling



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.

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