Bab's Blog

It's just me, in words.

The basal rate polka. . . October 18, 2011

Filed under: Diabetes — babscampbell @ 7:50 pm
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Since I’ve been on insulin, I’ve read blog and twitter posts discussing basal rate testing, fasting, recording, etc.  I know the proper basal rate testing instructions and worksheets are in my pump manual and it appears in a couple of books I’ve read since then.  Since my breast cancer diagnosis, I’ve had so many variables effect my insulin rates and it’s been like juggling chain saws to keep up with it all.  I had been wary of changing my rates on my own.  My Dr. would do all sorts of calculations and charts and print out my pump and meter records and come up with numbers that would immediately make my days better.  I was afraid to take this into my own hands. . but, you learn alot when you have to.

During the first four chemotherapy treatments, I wasn’t eating as usual, so I kept crashing.  I remember Scott (that devilishly handsome if yet grumpy DOC hero) reminding me that the basal rate should keep your BG level with or without food.  I started noticing a pattern in the times of day I would crash and started lowering my basal rates a little at a time so  that I noticed my BG leveling off.

Just about the time I figured out how to lower my basal rates to keep from crashing, they changed my chemo treatment meds to add steroids.  Steroids made my BGs SOAR.  The very first night I woke up every two hours trying to chart when the steroids hit my system and how quickly my numbers would rise and when they would come down.  At hour 6, it started climbing quickly.  By hour 8 I was steadily in the 300’s with corrections not making much difference.  I started increasing my basal rate AND using a correction bolus.  I finally figured it out that the morning after taking the steroid, my basal rate had to bumped up to 7u/hr to bring my BG down below 200, then 5u/hr to maintain between 180-200.

Now, I’m off chemotherapy and I thought I could just go back to my old basal rates prior to my cancer diagnosis.  But, there are still variables.  I had surgery, a post-op infection, another surgery and now recovery.  Surgery is so stressful on your body and I noticed that immediately following my numbers were running rather high.  I’m now resting and recovering and my old basal rates are still not working, but I used that as a baseline.  I LOVE having my continuous glucose monitor (CGM) to help track the trends in my BG.   I was waking up at over 200 every morning. 240-280 was not uncommon.  I could look back on the CGM and see that at about 5am, my trend would start rising.  I counted how many correction units I needed, divided it by the amount of time between 5am and my waking and then added that into my basal rate.  I’ve finally woke up the morning and my BG was 113!  I was THRILLED.

I now have 4 different settings throughout the day and no matter when I have a chance to eat, I haven’t crashed in quite a while.  Because I was first misdiagnosed and had to become my own advocate, I think I was a little more willing to try this experiment on my own.  I’ve spoken about this with others in the D.O.C. and have learned that many of you adjust your rates all the time.  I think it’s really important for each of us to know our bodies, recognize changes, recognize when the variables change and anticipate corrections that may be needed as you face new circumstances and conditions.

If your BG readings are not where you’d like them to be, make sure to discuss this with your CDE or medical professional. I’m not a Dr. so I hesitate in suggesting others play with their rates as I have.  But, if your Dr. encourages you to make adjustments, don’t be afraid to try.  Mine just asked that I make SMALL  changes at a time, no more than .10 of a unit at a time.  You can do this.

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The New Diagnosis January 25, 2010

Filed under: Diabetes — babscampbell @ 1:34 pm
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I was having higher and higher blood glucose readings.  Exercise was making it worse.  I couldn’t really eat anything without it reflecting an even higher number flashing in the meter window.  I felt horrible, actually worse than when I was first diagnosed.  My head continually felt “thick,” it was hard to concentrate, I was exhausted, thirsty and SO frustrated that I did everything I was supposed to and it didn’t help. 

The guilt associated with diabetes can be devastating.  When you’re told that following “the plan” will eventually lead to a happy, healthy life; that you’ll eventually be off meds and be able to live “normally” with diet and exercise and that slips away, you question everything you’re doing, eating, etc.  You keep looking for that one thing that you’ve missed.  Did I miscalculate the carbs? I should’ve exercised just 10 more minutes!  Should I drink more water?  Should I workout again or sleep it off?  It’s maniacal!

That’s the state I was in when my twitter friends jumped in to help. One said that my story sounded very familiar to her.  She, too, was diagnosed as a Type II and it was later changed to Type 1.5 LADA.  She (along with a few others) suggested I get in right away to see an Endocrinologist. (a Dr. that specializes in diseases of the Endocrine system, a specialist in diabetes) I started searching on the internet only to find that most Endos are either not taking any new diabetes patients, or they’ve got such a large patient load that it takes 3-4 months for the first appointment.  Then another friend on twitter jumped in to help.  He was going in to see his CDE, and mentioned my story to her.  She and I spoke on the phone and she suggested, to get in earlier, that I volunteer for a research study that KU was involved in.  I would be able to see an Endo immediately, get free office visits, free lab work, free meds. . it was too good to be true!

I made the appointment and went in to see the CDE in charge of the clinical trial and the Dr.  As I explained my symptoms and the journey thus far, they each wrinkled their brow and answered several times with a, “Really?”  As he ran the end of the reflex hammer across the bottom of my foot he said, “I’d like your primary physician to run a blood test for you.  You’ve got an atypical presentation and I’d like more lab work.”  What?  What’s atypical about my presentation?  Then he said it. . .I don’t think you’re a Type II at all.  I pressed him further, asking which symptoms were atypical.  Apparently, the fact that it hit rather suddenly, I have no immediate family members with diabetes, the fact that I can feel my blood glucose rise and fall are not typical of Type II. 

The test he wanted performed was a GAD-65 Antibody. This test looks for a specific antibody in your blood that shows your body is fighting against the beta cells in your pancreas.  A normal test result is 0.05-0.1, mine was 25. This means my body has been building up antibodies to fight my pancreas and my pancreas is shutting down insulin production.  Indeed, I am not a Type II, rather I have LADA, or Latent Autoimmune Diabetes in Adults, also knows as Late Onset or Insulin Dependent Diabetes.  I was able to get on insulin and start seeing the Endo this week.  I feel so much better already and look forward to what fine tuning of my treatment does for my day-to-day life.

I hope my story helps another along the path, if just to let you know I get it, I’ve been there.  I know how a high makes you feel like your head is full of Jell-O.  You question everything you did that day, what did I eat wrong? Did a miscalculate? Should I exercise? Should I not?  AAAGH

I also know how a low can bring on a feeling of panic, fevered, shaking panic.  All you know is you MUST eat and you must eat NOW!  You feel like you need to just open the fridge and start shoveling it in.  Your brain is trying to remain calm and say. .no, I’m ok, and your body is screaming, I’m dying!  Eat something NOW! 

So, I hope you’ll add me to your regular blog reading, comment, have a conversation.

 

The story begins. . . January 24, 2010

Filed under: Diabetes — babscampbell @ 10:47 pm
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I thought it was really strange that I needed a new vision prescription so soon.  I had just ordered new glasses in November and it was now February.  It was rather sudden.  I was surprised that I literally woke up one morning and my glasses didn’t correct my vision.  In fact, my vision was correcting itself and within a couple of days, I didn’t need my glasses at all.  It was easier to concentrate on this simple gift of sight than to think about all the other things that were nagging at me.

I was increasingly thirsty, but, it wasn’t the type of thirst I’d had in the past.  I’ve experienced dry, parching thirst of playing softball in Oklahoma, in July with the heat rising off the dirt of the infield.  This was unquenchable to the point that my tongue stuck to the roof of my mouth when I tried to talk.  I was also getting up several times each night to visit the restroom.  Now, I know that “at my age” that’s typical, but not 4-5 times each night.

I was eating everything I wanted, literally.  I was insatiable, eating ice cream at least twice a day.  I frequented fast food chains eating the super-king-sized-swallow-calories-until-you’re-in-a-stupor meal.  What was even MORE compelling than the hunger was that I was losing weight!  I lost 40 pounds from February until June of 2009 and have since lost another 5.  Now, I know that sounds like the dream diet; eat it all, lose a pound a day, but the constant headache and fatigue was really not worth the glutenous intake.  I would eat, pass out, wake up to eat some more.

I also had a few symptoms that aren’t in the textbooks, but I have found references to them since.  I would have the worst cramps in the calves of my legs, just before waking.  I’d had “Charlie Horses” before, but these would leave bruises from cramping up so tight.  I also started losing hands full of hair.  These were the symptoms that finally drove me to the Dr.

I had an idea of what was brewing.  I’d even practiced the thought of hearing, “diabetes” so that I would face it bravely when the Dr. spoke the words.  I went in and had a random blood glucose (BG) drawn and it was 287.  I went in a few days later with 14 hours of fasting behind me and it was 265.  I was told that two tests over 200 and a fasting result that high meant I had. . .I waited. . .the “D” word.  Namely, he said I had Type II Diabetes.  The Dr. was kind enough to not overload me with information that first day.  He said, “you’re probably in shock so I don’t want to throw alot of information your way that you won’t remember.”  He arranged for me to meet with the Certified Diabetes Educator (CDE) to learn how to change my diet, gave me the requisite speech about further complications I want to work hard to avoid and sent me on my way.  He did also add that he’s got many patients that correct their diet, get exercise and can even be taken off meds.  He was hopeful that soon, if I was motivated and “compliant” I too would be fine, not needing medication and completely controlling my diabetes with diet and exercise.

I had two weeks until my appointment with the CDE.  In the meantime, I didn’t know what to do, what to eat, so I tried to follow my old Weight Watcher’s plan as I knew that had been deemed a “healthy” diet by my former Dr. Well, that diet was all about counting points rather than carbs.  I tried to just make healthier choices; fruit instead of chips, wheat bread instead of white, all the things I remembered from WW, but it was still too many carbs and I was still falling asleep 20 minutes after eating.  Finally, I met with the CDE, was put on a healthy eating plan, told to exercise 15o minutes a week and sent off to be the model patient.

I had a month of being amazed at how well I was doing.  My fasting BG was down below 140 in the mornings and during the day, I was able to keep it under 180, which is what I was given as target values.  I wasn’t exercising regularly yet and my numbers were starting to creep a little higher each day.  One day, I was feeling exceptionally bad, checked my BG and found that it was 480!  I called the Dr. and he suggested I come in right away.  He looked through my BG log and asked what was the difference between a few weeks ago when my numbers were down and now.  I explained that I was working on a project that required 12 hours of typing a day and I wasn’t getting exercise as I had a few weeks ago.  He was blatantly honest and told me I had two choices.  I can exercise or I can die.  I chose to exercise.

I again had another month or so when the treatment seemed to work.  I could test before exercise and after and see that my BG had dropped at least 100 points.  It was really amazing!  Then again. . the numbers started creeping up, no matter how hard I worked.  There was one night that my BG went up into the 300’s.  I worked out for 3 hours that night trying to work it down and it actually went up!  It was maddening. . I finally collapsed on the couch in tears.

The numbers continued to climb.  I had another checkup and mentioned my concern but my A1c was down from 13.7 to 7.3. (We strive to have this result be under 7)  This A1c test measures how much glucose has glycated “stuck” to the hemoglobin in your blood cells.  Blood cells live about 3 months, so this gives a 3 month record of your glucose levels.  it’s a valuable test to see long-term change in your BG levels.  The Dr. was SO pleased with the results. He sent me on my way.

Next post. . .A new diagnosis