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.


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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