Bab's Blog

It's just me, in words.

D-Blog Day-A Trip to the Endo November 9, 2011

Filed under: Diabetes — babscampbell @ 10:11 pm
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Today I had my quarterly visit with my Endocrinologist.  I. LOVE. MY. ENDO.

The visit starts off with the usual catching up. . “what’s been going on in your life since the last time?” he asks.  Well, I went into a narrative of my surgeries, my infection, my neuropathy, my radiation treatments. . . he listened, leaned back in his chair and smiled at me, then said,”you are pretty amazing to me.”  What?  Wha?  He continued, “You’ve really been through alot this past year and you’re in good spirits and thriving.  In the medical profession, I see so many people in different situations and coping at different levels.  I just think you’re a really strong, amazing person.”

Wow!  I do hear that from others and I’m happy they see my strength, (which is not my own, btw. .rather from my faith) and my warrior mentality.  He told me that he admires a Buddhist saying. “There are two kinds of problems; those with solutions and those without.  If yours is a problem with a solution, then apply the solution and move on.  If there isn’t one. . move on anyway and stop fretting about it.” That was a Dr. R paraphrase. . but, I like it.  I told him that I definitely have moments when I break down.  My poor husband and mother get to hear most of that.  But, I try to be a positive, upbeat person, so I allow myself to feel the down times, but refuse to wallow in it.  I give myself an hour to really cry, boo-hoo and blame everything under the sun for my situation and then, I need to go clean something.

After all this mutual admiration, he checked my eyes, my neck and lymph nodes and my feet.  Ahhh, my feet.  The last four treatments of chemotherapy left me with peripheral neuropathy. It’s most painful at night, with my feet burning and feeling like someone is stepping on them, but numb on the bottom.  I’ll never figure out how I can be numb and in pain at the same time. . but, there it is.  The pain radiates up into my calves and feels like someone is grinding away at my calf muscles.  I’ve been taking narcotic pain killers, just to be able to fall asleep at night and I end up waking up exactly four hours later, requiring another dose.

He poked around my feet and said, “how did you injure your foot here?”  What?  I haven’t injured my foot.  He continued poking around in front of my left ankle, “Oh, this is definitely an injury of some kind, you have a large swollen area here; looks like you’re building up quite a hematoma.”  Seriously, I have NO recollection of hurting my foot.  I insisted I had no idea that I’d injured my foot recently.  He smiled up, “Aha. . that’s what neuropathy is all about.  That’s why we check for you.  You’re obviously unable to feel your feet correctly and something has happened here.  It looks like a sprain maybe or you banged your foot against something.”  I have no idea. . but, I’m supposed to ice it up at any rate.

So some refilled prescriptions, a different med to help with the nerve pain, some sample insulin to keep in case my pump dies again, some more small talk and admiration and another appointment in 3 months.  Oh, and did I mention? My A1c is 6.3!  Woot!  I expected it to be much higher with all the surgeries and infection.  I head toward the door and he stops me to say. . “if you need anything, you call me, even if it’s not diabetes related.  I don’t offer that to everyone. . just the fighters.”  Thank you Dr. R.  I’ll be back soon enough.

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The Endo to End All. . January 30, 2010

Filed under: Diabetes — babscampbell @ 11:01 am
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bad news and pain that is. . .

I had my first appointment with the Endocrinologist yesterday.  He gave me LOTS of good news including my A1c result of 7.9, which, I’m sure, is because of the blessing which is my insulin.  He’s increased my doses to help me get my numbers down even more.  The BEST news is, he doesn’t think I need to lose any more weight (YAY!) So, I’m now on a normal, 2,000 cal/day diet instead of the 1,200 cal/day I was on.  That also means I can eat twice the carbs as before.  I have an appointment with the CDE/Nutritionist on Wednesday and will meet with his PA in March.

I was given quite a bit of information on different pump options and will be trying to decide on that before my March appointment.  This seems like such a big decision, because it’s such a big expenditure, it’s not like I can change it if I don’t like it.  I’m currently leaning toward the Omnipod.  After reading so many stories of getting the tubing hooked on doorknobs, etc. .I’m definitely thinking tubeless is the way to go. I’m enough of a klutz that I don’t need added opportunity to bring on pain.  I suppose it’ll depend on my insurance as well.  I’m open for suggestions if you’d like to share. . .

So, this morning, I’m allowed to eat 45-60 carbs.  I was so excited to have oatmeal with fruit in it!  By the time I calculated everything, 41 carbs. . .ha ha  Most of my excitement is that I can eat healthier.   When you’re restricted to 30 carbs, you can’t even have a piece of fruit unless that’s ALL you’re having.  I’m actually happy I started my meal plan so restricted because I realize now that 1/2 an apple is really filling and I don’t need to eat the as much to feel satisfied. I feel like the whole world is open to me and I’m excited to try new recipes and keep my BG low!

I was also pleased that he spent quite some time talking to me about the emotional side of my dlife.  He said he’d like to get my A1c down to 6.5, but to make sure I’m eating and that I don’t ‘beat myself up.’  If I go to a party, have a dessert.  If I’m out with friends, enjoy myself.  You learn to eat right when you congratulate yourself on minor wins rather than attacking yourself for occasional misses.  That left me hopeful.  I’d read so many blogs and tweets about the “evil endo” that I was a little afraid of what I’d hear.  He seems to be more of the “catch them doing something right” kind of guy.

Have a GREAT weekend!  I’m off to take Christmas decor down. FINALLY

 

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.