Give Me a New Year, Please

2009. It has been a year. This was the year that, in January, I landed in the hospital with a Type I diabetes diagnosis. The next day I stared up at the TV in my room, and saw a commercial for mint M&M’s, and cried as I wondered if I would ever, ever eat one.

Apart from 1996, when I got married, and 1999, when I had my first child, I would have to say nothing has quite changed my life like 2009. And, similar to those changes, this one is permanent. Unlike those earlier years, however, it’s not a change I wanted, or actively prayed for, chose, or even remotely ever thought would happen to me. The other difference is that the “permanance” is only for this life, not the eternities. However, there are days when “just this life” seems long enough, thank you very much.

“Living with diabetes is like living with a tiger. If you feed it, groom it, never turn your back on it; you can live with a tiger. If you neglect it; it’ll pounce on you and rip you to shreds.”By Wil “Printcrafter

I do what I can. I read everything I can get my hands on, including the large amount of quackery out there. (take this supplement, and you’ll be fine!) I watch my eating carefully, (I have basically cut out refined sugar altogether), I dose my insulin, I test my blood sugar, I go to my doctors and follow advice, I took experimental drugs as part of a study, both to help my health and increase the knowledge base. I even {shudder} exercise. While much of the time it’s just what I do, there are times when I want to throw my insulin across the room, eat a dozen doughnuts, and just say “screw it.” But I don’t. Because I’m not 18 and immortal. I have 3 children, and a disease that is ALWAYS vying for control. Just when I think I’m doing fabulous, a weird reading will show up, just to remind me that the tiger is still in the room. And then I get mad.

When I take the long view, it depresses me. When I think about the fact that essentially, the treatment for Type I hasn’t changed since insulin was discovered, it depresses me. The methods of delivery may have improved, but still, it’s basically “have some insulin, and good luck figuring out how much you need, because as much as we like to think it’s an exact science, it’s really not, but hopefully we can all figure it out together while we monitor you for complications.” When I think about my kids, well, I can’t really go there.

I read books, watch movies, and get sad that if I somehow fell into fictional Georgian England and met Mr. Darcy, I couldn’t marry him because I’d have to go back to my current time for insulin. It bothers me that people can fight bad guys without worrying about what the adrenalin rush will do to their blood sugar levels. And then I laugh at myself, because really, at that point, I have descended into the ridiculous. So I can’t eat yummy pie with yummy Agent Booth. Yeah, it was diabetes that stopped THAT from happening, because it was such a possibility before.

So I take it one day at a time. Sometimes one meal at a time. I may not be able to handle doing this forever, but I can do it today. The fact that this makes me sound like an alcoholic is not lost on me. And I HAVE survived this year.

I have even been taught several things. I know that angels have surrounded me at times, protecting me from myself when I knew not what has happening to my body. I know that taking care of myself is critical, and really, I eat better and move more than I ever have in my life. I know that Diet Dr. Pepper tastes like ice icream. I know that Mormons like sugar. I know that insulin is expensive. I know that my family loves me, and that my husband is willing to fight tigers for me. I have hope that one day, the constant needles and the constant pricking will be a thing of my past, although I have no idea when or if that will ever happen. I can still hope, though. I have to.

I also REALLY want to say (and ok, yeah, HAVE in fact said) ”Ok, Lord, lessons learned, could you please take away the disease now?” I really, really, wish that was how it worked, and yet my faith in miracles has not waned.

I saw a sign today that said “peaceful 2010.” And that is what I want. It’s what I want for me. It’s what I want for you. Peace. And the fact that we happen to worship the prince of peace, and that He has promised us His peace, and not as the world giveth, well, that is not lost on me either.

Peaceful 2010.

(2009 can jump out the window for all I care.)

Just for the record.

That anxiety I mentioned? (I did mention it briefly, it's OK, you don't have to look through old boring posts.) Turns out, it's a possible side effect of the study drug (teplizumab). Who knew?

It's gotten much, much, better. So that's good.

Oh, and the burning feet? Also a possible side effect. Fabulous. And that hasn't gone away. It's hard to know, though, because nerve damage is also a side effect of diabetes.

(I just had Thanksgiving dinner. It was yummy. I hope I managed to dose accurately.)

I am so putting up Christmas tomorrow.

Thanksgiving and Diabetes

I am currently about an hour away from eating my first Thanksgiving meal as a diabetic. I have no idea what the carb count will be. Heaven help me. I am not kidding - divine intervention would be very welcome.

Let's face it. You can talk all you want about gratefulness, family time, etc., and that's all there. It IS. But when push comes to shove, Thanksgiving is about the food. And anything that's about food means it's about diabetes as well. It's always there, nudging you when you look at the stuffing and mashed potatoes, chastising you for even THINKING about that pie. Is it worth another shot hours later for it? Yes? No?

Frankly, diabetes is always an unwelcome visitor, and I'm tired of it. And oh yeah, I have decades of this ahead of me, if I'm lucky. So I guess I better get used to it. Gah, that's a depressing thought.

Ok, breathe. One day at a time. I can do this.

I may just have to resign myself to having a weird blood sugar day. But frankly, I can't stand weird blood sugar days, not only do they make me feel awful, but I know they are damaging to just about everything in my system.

I am snapping out of my self indulgent whining now (but...but...this disease sucks, and I want everyone to know it, all of the time....whine, whine,SMACK) and focusing on the fact that we've had fabulous friends here this week, and it really has been fun. I am thankful for that. Also, cheese has no carbs. Awesome.

Sigh.

Last time, 3 days after I got home from the infusions, the lows began. This time, not so much. I'm trying really, really, hard not to be disappointed about this. After all, this drug is new, there are no hard and fast answers. Still. Sigh.

Heading Home

I am sitting at the airport waiting to go home. I can't wait. I am so homesick, but all will be remedied soon.

The infusions went well, the rash did appear, but wasn't nearly as bad as it was last time, and I passed all my labs and got the full dosage of the drug. I kept worrying that I would get an infection right before, or the swine flu while I was there, just that something would happen to interfere with me getting the drug. Nope. Got it all. Whew.

I have more anxiety than I ever used to. More fear, too. I don't really know what to do about that.

My sugars were a little wonky up there. Nothing huge, but it did spike here and there, and my pre meals weren't quite where I liked them. One day I woke up at 148. You see, not horrendous, but not good, either. This added to my fear that I was getting sick, and would fail the CBC they ran (almost) daily. I did pass all my labs, but let's just say I don't want to run an a1c right now. Give me a few weeks at home, in my regular routine, with no restaurant meals and homesickness added to the mix.

This disease, though, it likes to rear its ugly head and remind you its still around and vying for control. I hate it when that happens. It's very discouraging. So now every time I work out I visualize myself beating up diabetes. It makes the workout a little more fun.

I got to the airport today really early (I'm a little anxious to get out of here) and stopped to get lunch. Pulled out my Novolog and bam! Dropped on the tile floor, and thus I have another bottle completely broken. I had just opened it, too. I always travel with extra now, (thanks to 3 month supplies coming mail order - I just make sure I'm home when it's delivered so it doesn't sit in the heat), so I reached in my purse to get my other bottle only to realize that I had put it in the checked luggage. I NEVER do that. I ALWAYS have extra with me. Today, though, have now rendered that "never" and "always" complete lies.

My hands smell like insulin now. It's not a pleasant smell.

So I sat and stared at my lunch wondering what to do now. I had one of those damn spikes post breakfast (191 1.5 hours after - I felt weird, so I checked) and my pre lunch was around 135, so it had come down, but see, not exactly where a pre meal should be. Seriously, what would you have done? With airport waiting time, flying time, etc., it would have been about 4 hours before I had access to my Novolog. I couldn't decide if I should eat, and just issue a correction dose later, go back to ticketing and ask if I could get to my insulin, or what. In the end, I ate a little of the broccoli, tossed the rest of my lunch ( bye bye $10!) and bought a bag of almonds to eat. I figured that was better than not eating at all, but low carb enough that it wouldn't spike me too badly. Right decision? I have no idea. I have candy with me just in case.

Then I stared at all the people who were eating ice cream cones and scones, and I felt a huge surge of envy. Normally, I'm OK with the fact that other people can eat whatever and whenever they want, and I can't, but today it got to me. I blame the homesickness. Or the weather. I always like to blame Utah weather for all my problems.

Anyway, HI EMILY, it was fun to meet you, and I am happy to be going home. Hopefully this newest dose will do its thing. I'll be watching, and beating up diabetes on a regular basis.

It Begins

Tomorrow I leave again for the next set of infusions.

I'll let you in on a secret. I don't want to go.

I don't want to be cold for 2 weeks plus. I don't want the nasty rash. I don't want to feel like crap for the first week. And mostly, MOSTLY, I don't want to leave my family. I miss them already. And frankly, it's a little dull up there.

Morning - labs, infusion, while I read or whatever. Afternoons and evenings, seeing people, shopping, hanging out. It sounds fun. And it is. For the first week.

See, last time, I thought 2 weeks would be doable. And now I know. A weekend away from your family - good. 2 weeks - too long.

My husband says it'll be better - it'll seem shorter since I've done it before. He says it'll go by quickly, and the family and friends I'll catch up with will help me deal. He's nice. A bit delusional, but nice.

Of course, I have a choice, and I'm choosing to go. Because nothing would make me happier than saying "Remeber 2009? That was the year I was diabetic."

In conclusion, obviously I like to start sentences with the word 'and.'

Another Low Day - Which is Good, Actually

Yesterday I woke up at 67. It stayed there most of the day. Each pre-meal was in the 70's (I hate how below 80 feels, don't you?) and I had 2 lows in the middle of the night. This morning - 72.

So today, I am taking my Lantus dose down to 8 units, see how that treats me for the next couple of days - to see if yesterday was an anomaly, or if it means my pancreas likes to work better.

Seriously, though, if the dose stays lower - and I don't see why it wouldn't - every other time I've reduced my insulin, it's stayed there, and done good things for me - this means I am close to HALF the insulin usage I was before. (That's both with the Novolog and the Lantus). With the next infusion scheduled to begin in 2 weeks, I am optimistic about my future.

I mean, low days don't feel so good, but I'm OK with it if they help my a1c and indicate possible cell regeneration. Of course, I never purposely go low. No way, man.

Also, I have split my Lantus does - one in the morning and one at night, (9 a.m. and 9 p.m.) and even though it means more shots, I like it better, so if I mess them up again and replace one with the other, I'm not taking too much Novolog. (I mean, yeah, it'll be more than I should, but it would be easier to fix). Of course, I am determined not to mix them up again. Too scary.

Does anyone else have to change their insulin ratios for different meals? It seems like at dinner, I have to use a tad more insulin per carbs than I do at breakfast/lunch. I wonder if the Lantus dose has worn off by then, but splitting it should have helped, and I've been split for a few months now. Of course, it could be completely due to the fact that after breakfast/lunch, I do stuff (exercise, clean the house, run errands, etc.) and once dinner is over, I'm all about curling up with a book or in front of the TV. Heaven forbid I be productive after 7 or 8 p.m.

Ouch.

My feet are burning. Crap.

Still honeymooning - I have proof!

So, last week I went up for my second "mixed meal tolerance" test, which is a lovely procedure in which they pull blood, and then give me a Boost drink (vanilla! I asked why they couldn't do chocolate, and they stared at me blankly and could give no real reason. I like to think the next study patient might get chocolate thanks to my efforts).

After my lovely "meal", which I have to drink in 5 minutes (not hard) they pull blood every half hour for the next four hours.

Oh, did I mention I go in fasting, having taken no insulin the night before? It's such a party.

Based on these results, they decide whether or not I am eligible for infusion. They are mainly checking C-Peptide levels, because if there is no C-peptide activity, then there is no insulin production to preserve, thus making their efforts in vain. (Although I do wonder if someone who's been diabetic for years could have some positive reaction to the drug. Maybe that'll be their next study.)

I am happy to report that not only do I still have C-peptide activity, my levels are higher than they were before! 3.5, in fact, which is fairly high, even for non diabetics. That is excellent news.

So my next infusions start towards the end of October. If this dose helps as much as the last one did, well....fingers crossed.....

They ran another a1c, too. 6.4. Not as good as the last one, but I think my last one (5.3!)was so low due to multiple lows as I kept having to figure out my insulin:carb ratio that was constantly changing. Still, 6.4 ain't bad. I'll take it.

I Am Hungry.

For the past few days, I have been STARVING. Like, all the time. the diet hasn't changed, and the sugars have been stable.

What gives? I haven't felt this way since I was pregnant or nursing, and well, that's definitely not the case now.

Anyone else starving? Is it the amylin thing? Do I mention it to anybody? Will it go away?

More Numbers

Man, this is boring, boring stuff. You know, if you're not me.

VAP test results came back today. Apparently, the fat is pretty fluffy. Good.

Also, when they ran my lipid profile in July, my LDL was 162(considered high), HDL 47 (good) total 221.

NOW the LDL is 146 (moderately high), HDL 52 (very good) total 215.

Of course, the total number doesn't mean much, it's all about what kind of cholesterol you have.

These tests were run almost exactly a month apart. So things are headed in the right direction - although the triglycerides went from 61 to 73, but both of those are still quite low.

As far as the extended results from the VAP, the Lp(a) cholesterol (a very dangerous inherited LDL cholesterol that does not respond to statins), very good. 6. (Under 10 is what you want.) All LDL is pattern "A" the large, buoyant kind. Whew. Pattern B is dense, and often associated with diabetes. I have none of that, not even any A/B pattern. It's the Lp(a) and the pattern that you really want to look at, and the main reason for the VAP.

CRP = 1.1. Under 1 is low cardiac risk , but 1.0 - 3.0 is average cardiac risk, so I'm on the low end of average.

So there you go. No statin for me. The numbers do kind of fascinate me, but then, they're my numbers.

Statin update

Well, I called the study and they got back to me and said I could go on Zocor, but I had to go off during the infusion time. (October) Going off and on seemed a little strange, so I decided to wait until after my infusions to take it.

I wanted to talk to my endo about it. I had my appointment yesterday, and talked to him about waiting until after the infusion to start the statin. He thought that was a good idea, although he wasn't sure he wanted me to treat the cholesterol at all.

I have a family history of high cholesterol, but no history of heart disease. Have I mentioned how much I love my endo? He knows the ADA guidelines, and the reasons behind them, but he firmly believes in treating the individual. He was saying all the stuff that I was reading, that treating high cholesterol doesn't necessarily prevent heart disease, and that some high numbers don't necessarily a sick person make.

HOWEVER, seeing as you do need to be a tad more aggressive when dealing with diabetics and cholesterol, he ordered a VAP test and a CRP test, and he was trying to describe what it was for, and I said "to see if my fat is fluffy?" He laughed, and said "how do you know that term? That's exactly it." I said, "they told me in class."

So there you go. Let's all hope for fluffy fat.

I Did It AGAIN!!

I switched up my insulins again, and once more, overdosed. This time, it was on Friday. Woke up, thought "time for my Lantus", and boom. All 10 units were of Novolog. Fabulous. I didn't even think about it (or notice! How scary is that??) until about 10 minutes later when I went to take my Novolog to dose for breakfast. That's when I realized...I've seen this bottle today...and it wasn't good. (I keep them in separate places.)

I was on vacation, and was packing up to leave. I completely blame that. But still. NOT GOOD, people! I ate my breakfast, doubled it, in fact, which can account for maybe a third of the dose that I took, and then told my husband and went and sat in the car eating Starburst while he packed up everything.

It actually wasn't too bad. I would check my sugars every 15 minutes, eat a candy, and wait. Timing wise, it worked out pretty well, so I didn't go too low or too high. LAST time, (and I can't believe I have a frame of reference for this, gah!) I freaked out and drank a can and a half of Dr. Pepper and munched candy one after another. I got fairly high (mid 200's) and then waited for the insulin to do its thing. This time, I just kept it slow and steady, but this time, it was more insulin. There will NOT be a next time.

Still, though, lots of candy on hand is a good thing. I think I need to be cured now. Obviously I can't be trusted with these meds.

Six Months

Today is officially the six month anniversary of diagnosis.

It really has just become a part of my life, something I just deal with, and for the most part, I'm OK, since the control is still pretty easy.

But today, the permanence of this disease is sinking in. I've been doing this for six months, and will be doing it for many, many more. All the months, actually. There's no "six months down, six to go!" rallying cry or such. It's a little depressing.

But there's nothing to be done about it, and wallowing is not pretty or healthy. So I just carry on, buying insulin, counting carbs, and hoping that medical breakthroughs continue to happen.

Statin, statin, who wants a statin? Do I?

So, I switched PCP's recently. The new dude ran a lipid profile, since the one I had done at diagnosis was hideously bad, but nobody takes that as accurate, since high sugars also bring up your cholesterol. (Seriously, is there anything high sugars do not screw up?)

Anyway, the LDL was high, and he sent me a card with the results along with a prescription for simvastatin, the generic for Zocor. The rest of the numbers were good, btw. Triglycerides, HDL, all that. And it is light years better than what it was in January at diagnosis.

I'm a little torn about this. On the one hand, I know high cholesterol is bad, especially for diabetics. Bad, bad, bad. On the other hand, I've been reading about statins, and they seem to be pretty well tolerated in for short-term use, but long term, the side effects and risks really start to outweigh the benefits.

The thing that really concerns me, however, is that they have recently learned that they seem to lower your blood pressure as well, which has a lot of people saying "Great! 2 risk factors lowered in one drug!" For me, though, it is not uncommon for nurses to take my blood pressure multiple times, saying "hmmm....that's a little low...let me recheck." And I am constantly hearing "Is your blood pressure usually this low? Is this normal for you?" My last BP 2 days ago was 80/50. So yeah, I run low.

Plus, I'm not sure if I can take a statin while on this study, and there's no way I'm jeopardizing my status in the study for this pill. I asked the study nurse, she should be calling me on Monday to tell me whether or not it's OK.

So that leaves me staring at this prescription, wondering whether or not to fill it. What do you think?

Bright Light! Bright Light!

My eyes are dilated. The sun and I should be friends again in oh, 4-6 hours.

I am happy to report no diabetic retinopathy. I didn't think there would be, but if there's one thing I've learned about this disease, it's that YOU NEVER KNOW.

The end.

Ahem

I went up to Utah for another blood draw (I swear, so ridiculous that I have to go up there) and they ran another a1c. The result was.......(may I have a drum roll, please)?......................................

............................5.3!!!!!

Yeah, I'm pretty excited about that. Woot!Woot!

My Insurance is Changing

Just when I had this whole HMO thing figured out.....

I swear this is the fourth insurance plan we've had, and we've only lived here 2 years. Switching everything out every 6 months is getting a little tiring.

Everything will be more expensive (surprised?) but at least I won't need referrals anymore. Somehow, though, I'd rather get a referral than drop $50 every time I go to the endo when I used to have a $25 copay at specialists. Not to mention the increased cost at the pharmacy....

If only insulin didn't expire after a month. I feel guilty every time I throw out that bottle that's still 3/4 full. How ineffective is it after 30 days, anyway?

My Wrist Feels Naked

My bracelet just broke. The one that says "Diabetes" on it. The one I wear 24 hours a day, 7 days a week. It was cute, too. This is what it looked like. (Except my plaque was the long, horizontal one). Now I guess I should get a different one. Maybe I should get a stronger one? Or possibly take it off when I shower?

Unless it's some sort of cosmic sign.....

Holy Crap on a Stick

Today I was writing down my Lantus dose as I was bolusing my breakfast. Guess what? Thinking about 10 units of Lantus (yay for lower!) while dosing 2 units of Novolog is not a good idea. Mixed them up in my head, drew out 10 units, and began dosing. I figured it out and stopped at about 8 units. Crappity crappity crap crap crap. 8 units of Novolog when I need 2 is not a good idea.

I F-aaah-REAKED out. I had visions of my kids finding a dead mother in the house and not knowing what to do. I grabbed the Dr. Pepper and the Starburst and I forced my husband to come home so he could force sugar into me and call 911 if necessary. I called the Dr., who told me I would be fine, just eat a lot of carbs. Of course I knew that, but...isn't there something else? Turns out, nope.

I mean, I have to be 90 points high before I issue a correction dose. So in my head, 6 extra units could really take me out.

Obviously I am still alive and OK. I did not go to the hospital. But I haven't been this scared in a while. I didn't know how to tell my kids - "Watch Mommy in case she passes out and then call 911, but everything should be fine, but just in case, you know....."

I remember in the hospital them telling me to NOT MIX THESE UP. And now I have. I survived, but hopefully, never again. I can only imagine if my Lantus was 25 or something.{shudder}

A Test

Yesterday I ate approximately 33 grams of carbohydrate at lunch time. I did not take a bolus, mostly because I forgot my needle. (!!) But I figured, hey, now's as good a time as any to see how my pancreas will deal with this.

Blood sugar at dinner: 88. My pancreas (and the Lantus) totally kicked butt.

I am pleased.

I am scared to try it again, though. I don't want to work my pancreas too hard, in case it fails faster and ends the honeymoon. I don't even know if that makes sense, really.

I mean, HOW do you decide to go off insulin? It seems inordinately risky, really. But I will ask the study doc when I'm up there.

Still, for now, I am pleased.

Where is the Time?

Between seeing the endo every 3 months, the dentist every 6 months, my ob and pcp and eye doctor once a year, not to mention the extra study visits, plus diabetes education, it seems like there is no time to do anything else but see medical professionals!

That doesn't even take into account the frequent pharmacy trips. (I don't do mail order. Not with this heat. If I'm not home, the insulin sitting on my porch worries me.)

Not that I'm complaining. Each one of these people has helped me tremendously. I just wish I could see them less frequently.

People, I need a hair cut. I don't seem to have time to get one. I blame summer vacation. And diabetes.

Lows, Lows, and More Lows

In case you couldn't tell by the title, I have been bombarded with blood sugar lows for the past few days. I mean, crazy stuff. Last night I had dinner, (120 pre-meal, which is higher than I've seen in a while, but I blame the tasting of the food beforehand) and did the dishes afterward, and BAM! One hour later, I'm at 49. Ouch. I didn't issue a correction dose or anything.

You know, it's not like the dishes are strenuous exercise or an unusual occurrence.

The day before that, it was like I could not get out of the 60's, and so I lowered my Lantus dose a couple of units. Still, yesterday was bad.

Today I am continuing the lower Lantus and also adjusting the Novolog carb ratio, so I take less.

All of this, while annoying, is actually very encouraging, because it might just mean the study drug is helping.....the administrator did say some people lowered their doses a couple of months post infusion, which would be....now. (Some people lowered or went off right after infusion too.)

Here's to a healthy pancreas! (Or at least a healthier one...)

In other news, really like my new PCP. Bonus.

My husband has this theory...

He thinks I have an overabundance of Human Growth Hormone.

This is based on the fact that....I look young and have trouble putting on weight. i believe him on the weight thing. The young thing....well....not so much, but it's sweet of him to say.

It's also based on the fact that I make a lot of prolactin. This is released by the pituitary, and he believes (could be wrong) that HGH is released by the pituary as well. He thinks my pituitary is a little overactive.

So I was reading, that an increase in HGH puts you at risk for diabetes. It is used (and there's some controversy about this) for weight loss in obese patients.

Even if his theory does prove to be correct, and I have a lot of HGH, I don't know what that would mean for me. I don't think decreasing my levels of HGH would get rid of my diabetes or anything. (If it did, people would know. I mean, hello.)

The question is, do I mention this theory to my doctor? Would it matter?

I have an appointment this week with a new Primary Care (mine retired).

Ah....

Remember when my pancreas worked? Those were some goooood times.......

Do you know what I hate?

Well, to be honest, I hate a lot of things about this disease, but something in particular - when you look at what you're going to be eating, count the carbs, and dose accordingly. Then, halfway through the meal, you get full, and don't want to eat any more, but know that if you don't ingest the carbs you planned for, you're going to crash later. So you keep eating, and wonder, how is this healthy again?

Also, eating out is a pain in the tuckus. You can get some nutritional info on-line for chains, or ask them for it, but it is also very clear that nutritional info varies from restaurant to restaurant, depending on the chef, and these meals that have carb counts in the 100 grams or more? HO-LEE COW. Do any of you really eat those, and just take a lot of insulin? I mean, I've heard that's OK to do, but really?

We don't eat out a ton, anyway, so it's not really a big deal, but being out of town for 2 weeks for a study tends to increase your restaurant attendance (especially when you're being reimbursed for the meal).

Also, I hate scorpions. Not diabetes related, I know, but I still hate them.

Boring Numbers, But Good News Nevertheless (I think)

Well, I don't think there's any question about whether or not I got the drug, although hey, the placebo effect is pretty strong, so what do I know?

Anyway, the Monday and Tuesday after I got home, I had a few nighttime lows, (60s) having to munch the Starbursts multiple times a night. While tasty, it's not really the best idea in the world.

My endo, who has become very parental towards me (I'm so PROUD of you for doing this!) took me down to 12 units of Lantus and switched me back to a morning dose. The endo in UT put me on a night time dose of 13 (I was originally on a morning dose of 14. Boring numbers much?).
This means I had two days (a couple of weeks apart) without Lantus at all, (and not adjusting my Novolog dose) while I made the change, and both of those days my sugars were completely fine. So I think my pancreas is still functioning a tad.

My endo is super paranoid about night time lows and likes his patients to have a morning dose of Lantus, so if you go low, you're awake for it. The other guy (who was a TALKER, holy cow) likes night time doses so when it wears off, it's not shortly after a meal or a snack and your sugars won't spike. Both valid arguments, I suppose.

So, while I'm certainly not off the insulin, the dosage is lower, and I'm starting to have a lot of pre-meals in the 70s, which I NEVER had before. My pre-meals were good before, though, usually in the 90s.

I have another blood draw this week, which I have to go up to UT for, which I think is kind of silly, since they just draw blood and then send it off to Macrogenics. Um, hi? We have needles and post offices in AZ. But hey, you want to keep paying for plane tickets, I'm OK with it....

I Don't Want to be too Optimistic Here, but...

Blood sugar before bed:106. I took 13 units of Lantus. (I used to be on 14, the endo in UT switched me to 13 and changed me to a nighttime dose, to alleviate the post breakfast highs I was having.)

Woke up at 2 a.m. disoriented and shaky, checked my sugars. 77. I know, not super low, but I seem to react to anything below 80. I think it was on its way down, too. So I ate a Starburst and went back to sleep. Morning blood sugar: 77 again. I usually wake up in the 90s or 100s.

I know this is not conclusive evidence yet by any means, but I am cautiously optimistic that this means the drug is working. If it was working, I would be seeing lows right around now (3-4 days after infusion stopped) they said, so I am watching everything carefully to see if I have to back off the insulin dosage, or possibly (dare I say it?) go off it altogether. I see my own endo tomorrow a.m., so I will be chatting with him about how exactly to back off the insulin (the Lantus? the Novolog? Both? Slowly or cold turkey?). In the meantime, I am carrying lots of candy.

Keep your fingers crossed....

One Week Down, One to Go

I'm tired. I want to go home. I miss my children. I can't believe how long two weeks is! I thought it would fly by, but instead, plod...plod....plod...

Anyhooo--boring side effects noticed - severe fatigue the first couple of days, rash on arm, possibly due to the picc line and not the drug, and general malaise if they don't give me ibuprofen and benadryl beforehand (which they typically d0.) In general, not too bad.

Carry on.

Getting Drugged - Protege Study

I have sporadic internet access, as I sit here and get blood pulled, and drugs put in, and vital signs taken. I mean, they let me use their internet, but it’s a “pseudo-internet” that blocks all streaming video, which includes Hulu and thus makes it impossible for me to watch continuous Buffy episodes while I wait. Season 3 waits for me at home, and I believe the DVD’s are mocking me from afar.

(They don’t want their employees “wasting time” on Hulu and such. I say it’s a blatant blockage of agency. Empoyees should be allowed to waste time! They should be allowed to get fired! Choice and consequences, baby.)

So, anyway, my morning are spent in the hospital, with my afternoons and evenings free for me to whine at various friends (but I’m TIIRRED) and play “speed Sorry.” (rules invented by moi. It basically includes me moving all the kids pieces super fast so the game goes faster.)
Oh, and a few people have asked, so for the sake of clarification - the placebo in this study is just saline. Since the standard of care for diabetics is self management (in my case, shots), there wouldn’t really be anything else to give me - so it’s either the drug or saline solution. I like to think it’s the drug.

On the plus side, I am now considered “immuno-suppressed”, and with my wacky immune system anyway, I’m sure the swine flu will pass me right on by.

It’s cold here. It’s almost May. Boo.

Thanks for the prayers.

The end.

Diabetic Flair

What can I say? I just thought those 2 went together.

I have considered stealing Splenda packets from restaurants and adding them to my stash at home. I have justified it in my brain by saying they're there for my use, and just because I'm not using them at the restaurant, per se....Costco coupons cured me of this, for now.

Reminding me of the time the Mcdonald's guy gave me the dirtiest look as I shot up in the drive-thru with my 5 year old in the back seat. I don't think "diabetes" was his first thought when he saw that needle. He's probably telling everyone about the heroine addict he served and her doomed son.

I Am Officially IN!

I am in the study. I am getting experimental drugs that nobody knows what will do to me long term. I will be away from my family for a full 2 weeks, including a weekend that my parents will be HERE, at my house, without me. I will miss some big events at the school. It will be cold in Utah.

I couldn't be happier about it.

For one thing, all the labs they took and what-not, told me that I am, indeed, still making some insulin. This is good news. Because this is a drug that stops the T cells from attacking my pancreas, thereby preserving the insulin I am making, prolonging the honeymoon period, and basically improving blood sugar control, since my body will be doing some of it naturally. That's the goal, anyway.

They also took an A1c. My A1c at the end of January was 12.2.

ALMOST 3 months later, but not quite..may I have a drumroll, please? The result is......6.8!!! I must be doing something right.

All Done With This Disease Now

OK, then, I think I need more short-acting insulin in the morning and less of it at night. Is this possible, or am I just crazy?

I mean, really, eating the same things and taking the same dosage sends me higher in the morning and lower at night. I did the experiment. Is it due to exercise? My pancreas still working a little, but it only wakes up around noon?

This is a weird disease. I'm tired of it. I think I will go get cured now. Thank you.

Got The Hospital Bill

$34.00 every time they pricked my finger to check my sugars. THIRTY-FOUR DOLLARS!!! Yes, insurance covers it, but still. They pricked a lot. I swear insurance companies make everything more expensive, because there's no way the test strip+5 seconds of nurse time = $34.00. They probably wouldn't have let me fingerstick myself to save money if I'd wanted. But whatever. Who knows what the insurance actually pays, anyway. I swear medical billing is so screwy.

COST ACCORDING TO PROVIDER: X.
INSURANCE: We'll pay Y. (usually far less than X.)
PROVIDER: OK, then! Great!

I don't know any other industry where somebody says the cost is one thing, they get paid something completely different, and somehow, everybody's OK with this.

Strange, strange, stuff. I suspect this is not my last rant. I'm not even mentioning the resident who billed my insurance for treating my husband. HELLO, WRONG PATIENT. Surprised? Insurance denied the claim. (OK, I guess I just mentioned it).

Anyway.......

Your feet are numb - Did you know?

I got tested today to see if I am a candidate for this study. They took lots of blood, and it was really fun. Not fun. But anyway. I really want in, though. They are seeing some very exciting results.

As part of the exam, the doc examined my feet. He put something that vibrates on my foot and had me tell him when it stopped buzzing.

And behold! It was still buzzing after I said it stopped. And thus it turns out I have lost some feeling in my feet. Not much, and apparently, it's very common, even in new diagnosis patients, but still. I thought my feet were fine! Really, I did! It's very disconcerting to be told that you have nerve damage when you didn't have a clue.

And of course, I was told "control your sugars to prevent making it worse". But, but....I've BEEN controlling my sugars for as long as I've known. I'm starting to think "control" is just an illusion. I assumed foot problems would be years away.

That's what I get for assuming.

But...I Don't Get It

OK, so for the study prep, I have to show up at 10:00 a.m. on Monday fasting for a bunch of lab work.

My Lantus (long acting) dose is at 10:00 a.m. every morning.

The study doc says to avoid any lows, I should only take half the Lantus on Sunday. I don't get this. With only half my dose of Lantus all day, won't I run the risk of going high? And I saw those icky kidneys and bursting blood-vessely eyes. I don't want to go high. I mean, I know a day isn't that long, but still....

Do I take more Novolog at meals? That seems dangerous. Do I exercise my butt off all day Sunday? Why can't I just take my normal dose? I mean, by the time I got up there, the Lantus would be out of my system already, so fasting wouldn't be a problem. I understand that if my dose was at night, half would be appropriate. I don't know. I'm a little confused.

A Guinea Pig Sound, If I Could Make One, Would Go Here

Joining a study that's taking place in Ogden. Getting screened on Monday, and if my labs fit the criterion, then I go back later for 2 weeks to get infused. Should be interesting.

If nothing else, I get to go up to Utah over conference weekend sans kids and hang with my fam. It will be totally fun, but totally cold. I hate cold. I thought April was too late for the cold?

I'm sure I have long sleeves around here somewhere....

You'll Live a Long Life With Some Good Days

People didn't used to tell me I would live a long life. It was just kind of assumed. People didn't used to tell me to make sure and "enjoy my good days." It was just a given that most days were good, or supposed to be, anyway.

It disturbs me that this has changed. It disturbs me a lot.

"Enjoy your good days!" translates to "Because you'll have a lot of crappy ones."

"You'll probably live a long life" translates to "Hopefully you won't die at 60."

It's like an old episode of The Cosby Show where Claire has a birthday, and everyone is telling her "What are you complaining about? You still look good." She hated that word STILL. They used to just say "You look good." Why was the still in there now? Because she was older, and the expectation has changed.

That's me. The expectation has changed. "You'll STILL live long." If my lifespan was discussed at all, it was expected that I would live long, given that all my grandparents lived well into their nineties. Oddly enough, though, it didn't come up in normal conversation. Now it's all the time. "How are things going? Well, I'm sure you'll still live a long life."

I guess it's better than people telling me I'll probably drop dead at any second, like so-and-so with diabetes. ("Boom. Just dead in his dorm.") Oooohh, thanks for that lovely, uplifting story.

I had another education class, and asked about the fact that twice this month, I've woken up with high sugars. She told me it was probably the Somogyi effect, and that my liver was doing everything it could so I wouldn't die. To which I say: Thank you liver. Pancreas? Screw you.

Seriously, last thing as class ended - "Remember to enjoy your good days! "

For the diabeticially aware: My sugars before I went to bed was 78, so I ate a Starburst before going to sleep so I wouldn't go too low. And I did test last night at 2 a.m. 63. Crappity crap crap. Ate a starburst and fell back asleep with sugars at 95. Fasting sugar this morning was 76. I'm thinking my Lantus dosage might be a little high? Although usually I am in the 100s when I go to bed, and only twice this month to be high in the a.m. doesn't seem like a lot, but maybe it is. Just when I think I have a handle on this thing....

Anyway, I'm sure I'll still live a long life and I'll have to remember to enjoy those good days.

It's Allergy Season

Hey can allergies mess with your sugars?

He Loves Me!

Saw the endo today. He said he wishes all his patients were like me. Hee Hee. Say it again, doc! I will say, though, that my sugars have been really good lately. Can you say "honeymoon?" Let's not say it out loud, though, might jinx it.

He's going to try to get me into a study, if one can be found nearby. His brother apparently is a bigwig in the JDRF,so he's going to talk to him about me. He left his brother a voicemail while I was there about getting me into one of the studies that do islet cell regeneration, or one that suppresses the immuno response somehow. Anyway, I'm doing well. So whew.

In number news, he didn't run an a1c, but I'm eagerly awaiting that in 6 weeks time. He did tell me that my GAD antibodies were at 199. Normal is 1.4. Um, hello. So there's really no question about it being my immune system - this ain't no Type 2, baby. But we knew that.

Also, some random lady at Curves starting telling me all about her brother who died of a diabetic heart attack at 54, and how if I don't take care of myself, all my organs will fail. Gee, thanks. I'm realizing that random stories about strangers I will never meet are all a part of my "new normal". I guess that's OK, I mean, hey, whatever, but if I'm a bad mood, all bets are off. Then ramblings about your uncle's sugars will tick me off, and I will eat you alive.

I think people with infertility issues deal with this, too, and I'm guilty on the other end of that one, so I try not to let the stories bother me. (Hey, sorry, fertility issues people, if I've bothered you with my ramblings about people I know.) I think really, people with ANY health issue have to deal with random anecdotes, so I just listen and nod, take any new info (if offered) and then blog about it. So there. Anything you say can and will be used as blogging material.

Especially you, doc.

Edumacation

Went to a diabetes education class today - I know you're all feeling the excitement. Woo!

Anyway, I should have been going the last 2 Saturdays too, but I haven't been, the 1st one because the referral wasn't there yet, (and why should I pay for it when my insurance will?) and the second because, um, well, no good reason really. I can make them up the 1st 2 Saturdays in April, though. I probably will. Most likely. Maybe.

THIS one went over all the lovely complications of diabetes. It was so heartwarming, I could barely control the tears of joy that wanted to flow. I mean, really, is there ANYTHING diabetes doesn't screw up? Your spleen, maybe? Gall bladder? Your eyelashes? Do your eyelashes stay the same?

The gal encouraged us to get a blood pressure cuff, and she might as well have put neon lights flashing everywhere stating: CONTROL YOUR SUGARS. Not new information, really, I know I have to control my sugars, but all the icky pictures of icky things happening would have motivated Gandhi to quit fasting and eat some protein. (Although strangely enough, there were a lot of cartoon organs shown during the presentation, I guess they help tone down the DOOM that can become your diabetes diagnosis.)

Most of the education is geared for Type 2, seeing as how most diabetics are Type 2, but you know what? The treatment may be different, the cause may be different, but the complications are the same. So it was good.

Moral of the story: High Blood Sugar = BAD. Just remember that.

Just a Spoonful of Splenda

I remember one of my first "diabetic" meals in the hospital. It consisted of french toast with sugar free syrup, unsweetened iced tea, and cream of wheat. Since I can't stand french toast or syrup of any kind, (oh, the gagginess) and I don't drink iced tea, (I sent it back and asked for a Diet Coke) I attacked that cream of wheat with a vengeance. I took a huge bite, and then gagged as I tasted the unsweetened nasty goo. But I was SO HUNGRY, (they hadn't been feeding me, telling me the IV would take care of the hunger - yeah, whatever) and the smell of that horrible french toast was just making me gag worse, and so I hopefully picked up the artificial sweetener that had so generously been provided, poured it on the cream of wheat, and tried again. Now it tasted like nasty goo with chemicals added. Mmmmmmmmm.....SO much better. Diet Coke. The breakfast of hospitalized, diabetic champions.

So I've learned a few things.

First of all, sugar free Jello is a NON-FOOD and it is disgusting. I still eat it every once in a while, though.

Second of all, I found an artificial sweetener called "truvia" that I think tastes better than Splenda, but Costco sells Splenda with coupons.

It's a good thing I already liked diet sodas and Crystal Light.

"Free food" has a completely different definition for me now.

Eating protein with every meal helps a TON. Covering the carbs for oatmeal eaten without an egg and oatmeal eaten with an egg yield two very different results. I'm still not sure what to do if I don't have protein available, though. More insulin? More activity? Anyone have advice on this?

Also, pizza is the devil. Too bad, too. I like pizza.

Fruit seems to send my sugars flying, too, even when I think I've covered it accurately. Advice on this would be helpful, too.

So, I still have a few more (million) things to learn.

My kids have learned I have Starbursts on me at all times. They think this makes me a much, MUCH better mother.

My $100 Mistake

One of the things that really concerns me is how dependent I am on two tiny little bottles. Bottles that I can only get one at a time. Bottles made of glass. Bottles labeled "Novolog" and "Lantus."

I refilled my insulin prescriptions on 2/27 (Friday). The next Wednesday, I took my Novolog out of the fridge for my lunch dosage, dropped it on my kitchen floor, and swore when it smashed. What was I supposed to do NOW?

Called the pharmacy. They said they would fill a new prescription if my doc called it in, but getting it paid for by insurance was another matter. Called my endocrinologist. Closed for lunch. Called my PCP. Closed for the afternoon. Oh lovely. They always take Wednesday afternoons off, for reasons I don't even want to explore. Why Wednesday? Why the afternoon? Why do I keep thinking about it when I know it's making me crazy?

So -- ate some no-carb snacks (more cheese, anyone?) and waited patiently for the endo's office to reopen. In the meantime, called my insurance company and asked if they had a policy for lost, broken, or stolen prescriptions. Based on the title of this post, I'm guessing you know the answer. Yeah ---nope.

Got ahold of the endo around 2:30, got to the pharmacy by 4:00. They didn't have the scrip. I was like "THEY DIDN'T CALL IT IN???" "Oh, they did, but your insurance..." "Look, I know the insurance won't pay for it. It has to be out of pocket." "Well, that's going to be kind of expensive.." I wanted to reach across the counter, take him by his little white jacket, and start shaking him whilst shouting "DO YOU KNOW ANYTHING ABOUT TYPE 1 DIABETES?" I mean, hello - insulin. Not optional. My mood was probably not helped by the fact that I hadn't had a real lunch, and we were fast approaching dinner (although amazingly enough, by the time I got around to eating "lunch" at 4:30, the sugars were still in the normal range. Let's hear it for almonds, baby!). I was very proud of myself in that I did not shake him, I just said "Yeah, I know it's expensive. Still need it, though." He said to give him a couple of minutes, and bing-bang-boom, I'm $114.00 poorer but in possession of my life saving medication.

So now I'm totally freaked out. What if I'm mugged and somebody steals my purse containing my insulin, and it happens to be after pharmacy hours? What if it breaks again? What if I'm traveling and it gets lost or something? I mean, everything I've read about diabetes and travel says to take extra medicine with you in the event of the unknown. I can't seem to GET any extra medication, so how do people do it?

Why won't my insurance fill it early? (Liability. Cost. Stupid reasons.) They wouldn't even fill my test strips 2 days early. Yeah, like people are abusing blood glucose testing supplies. What a market those suckers have on the street.

I keep thinking about the people in Hurricane Katrina that had to live without power for weeks or were forced into the superdome for days at a time. I mean, there had to be diabetics among them, right? What did they do? In the event of an emergency.......what? I want insulin in my 72-hour emergency kit, please! How do I get it?

But You're Not Fat!!

When I started telling people I was diabetic, I began to notice a theme in people's response. It usually ran along the lines of "you are the last person I thought would get that!" "But you're not heavy." "If you had eaten better, maybe...." "But...really? Are they sure? You don't look like you would be diabetic."

People. Type I. Type II. MAJOR difference. Type 1 cannot be prevented. It can't be cured. The cause is unknown (although there are theories). Your immune system just goes wacky. Stupid immune system. Type 2? COMPLETELY DIFFERENT. Whew. Glad I got that off my chest.

I don't blame people for not knowing, I mean, hey, why would they? I didn't know until I got diagnosed, because looking up differences in random diseases was not really one of my favorite pasttimes. (It is now, though.) Approximately 90% of diabetics are Type 2, and most of the stuff out there is for them, so assuming my diabetes can be managed with diet and/or pills is not an unfair assumption.

So, I'll just tell you -it is not managed with diet or pills. It is managed with shots, 4 times a day, and carb counting at meals. Maybe one day I'll get a pump, or pens, but the shots are working just fine for now. It is managed, though, and I'm grateful beyond words that it can be. I have no desire to go blind or to lose random limbs. I do look forward to the day when it is just a pill, or when a cure is found, and diabetes is a distant memory. Can you imagine? One day I'll just be sitting around, eating whatever I want, saying "Remember when I had diabetes? That sucked."

My Diagnosis

OK, then, what better way to start off a new diabetic blog than with the story (however simplistic it may be) of my diagnosis? Yes? Good? Who cares what you think, I'm doing it anyway.

My story IS very simplistic. I had all the classic symptoms. I was dying of thirst, could NOT keep liquid in me, and started getting blurred vision and losing a little weight. People started wondering if I had an eating disorder (they told me this after the fact). The vision was the most annoying, the thirst was the scariest.

Unfortunately, the last doctor I had gone to was a complete MORON, so I didn't really have a PCP that I liked. So what do I do, but pull up my insurance plan, pick a name, and call. Because, really, have you ever Googled "frequent thirst" and come up with anything that does NOT include diabetes? There's just nothing there. It's pretty basic.

I go in, pee in a cup, and the doc walks in with, and I quote "You're diabetic, by the way. Type I. No question." (Apparently they checked my ketones, and they weren't good.) Oooh, way to put it gently, doc. He then starts listing "leading cause of blindness...blah blah blah" while I'm just staring at him. He stops mid-rant -- "Are you OK? I just kind of threw that at you." Um, yeah. You did. And am I OK? I have no idea. The world just tilted a little. I'm not surprised, per se, I was pretty sure I did have it, after all, but thinking you have a non-curable, life-threatening illness and being told you have one are two completely different things.

Then he tells me I have to get into an endocrinologist that day or else he will check me into the hospital. Ohh, boy. The hospital. His nurse starts calling around to various endocrinologists asking if they can take "a new Type I diabetic." Oh, sure - in a few months. I stopped her. "Listen, I don't mean to be rude, but the way you're phrasing it sounds like you have a Type I patient who's been managing this for months or years and just moved here or something. You need to tell them - 'You need to see her or she goes into the hospital. Use that term - hospitalized.'"

So she did, and calls back the one who my PCP originally wanted, and they said OK - two weeks, but wants to see lab work, stat. So the next day, I get a bunch of blood work done in the morning, and by that afternoon, I am checked into the hospital, there to be tortured by a roommate who loved her TV and a student nurse who couldn't put an IV in to save my life. But that's another post.

Blood sugar on admittance: 355 - A1C-12.2