Monday, November 27, 2006

Snow in Seattle

Originally uploaded by LilituC.

Not pictured: Seattle drivers in snow.

Sunday, November 26, 2006

Right to work be asked to leave for any reason

Well, my appointment with the new endo is finally nearing, on Wednesday. I have to psych myself up to giving my whole, long, complicated case history and have it make sense to the endo in the short time allotted. Then I have to assure her that my bg patterns are what I say they are, an even bigger challenge. Then I have to get her to approve the pump. All in the first visit. Here's hoping.

My bg seems to have evened out a bit. I'm seeing better numbers and I've even gone back to 1/14. So who knows. I'm still getting a spike of 30-40 points at night, though. It was 10 before the Lantus and now it's like 11:15. This is enough to put me outside my safe zone, so usually I wait for it and take half a unit of Novolog. On nights like tonight, though, it's more insidious. I was at 75 before it happened, so I ended up with a number below what I can correct since I can't give anything smaller than a half unit. Sometimes all is well by morning, and sometimes it isn't. Grr.

Today I worked out my healthcare costs, which I normally do every year in June. But this year a lot changed since then. So here it is: Medication (insurance copays): $210, Medication not covered by insurance: $220, Office visits: $30, COBRA: $824, Total: $1283

That's per month, guys. It will be even more if I get a pump. I'm feeling a little bummed out by this, and not because we can't afford it, because currently we can. However, that's more money than I've ever made by working and that is a hard thing for me to contemplate. I could probably make more than that if I worked full time, but I haven't been able to do that in a long time and it had a very detrimental effect on my health when I did. Now with the diabetes, it's even more complicated. The things I need to have in order to stay healthy and to be able to perform at work just aren't compatible with the way things actually are. I'm not disabled enough for Social Security, either, because theoretically I *can* work. The fact that the jobs I can do don't exist doesn't bother them any. My last job was one of those jobs: I did contracting from home for a major tech company. However, I have never seen another (legitimate) job like it for someone with my qualifications, and I did start searching again as soon as my contract was up. I *could* work an office job with flexibility in breaks and with a couple (very easy) accomodations. The problem is that when you say "accomodations," suddenly your IQ drops 50 points. Suddenly if someone gives you the wrong information and you act on it, it was your incompetence. Since suddenly people don't want to talk to you, this happens more often than before. Suddenly, finishing your work in 1/3 the time it took everyone previously is suspicious rather than lauded; there must be mistakes somewhere if only they could find them. And suddenly, they're finding any excuse to "let you go," which is exactly what happened in the three jobs I held prior to this last one. I know it's commonly believed that discrimination lawsuits are an easy thing to bring and win, but it's not true. Sorry.

Wednesday, November 22, 2006

Well, some bad news. MM talked to my insurance company and got several different stories, but finally they were able to determine that my Basically, they only cover Durable Medical Equipment at 50% and there's a $2k DME annual cap.

So this means that if I could get the pump this year I'd be paying $2800 and none of my supplies would be covered for the rest of the year. Then next year the supplies would be covered at 50% until I reached the cap. She said this sucky coverage was specific to the COBRA plan (previously DME was covered at 80%) and was chosen by the company. So the company *lied* to us when they told us we would be extending the same coverage that we already had. I'd be less annoyed if we weren't paying close to $900 per month for COBRA.

I said I was still willing to do it, so she sent me the documents and the payment plan information, which is *very* reasonable. I'm not sure yet if we'll need it since J. just got a great job offer. Of course, I still have to get samples from the rep so that I can find out if any of this is even doable. I think if it works it is worth the expense.

The next step is getting my new endo to sign the papers (they all said she was great) and getting referred to the Joslin clinic for training.

Sunday, November 19, 2006

Two steps forward, one step back

Welp, I'm on day three of the Lantus. So far I'm not really clear on what it's doing. I haven't noticed my bg being that much different than without it, and to make matters more interesting, I've been struggling with stubbornly higher postprandials the whole time. I know part of it is that I'm conservative with corrections because I don't want to end up low. But I'd also kind of like to know why it's happening so that I can prevent it. Oh, and I'd like a pony.

So I told Diabetes Pilot (which calculates my insulin doses) to correct down to 100 and changed my ratio from 1/14 to 1/12. I learned earlier that while travelling all day (with no activity) I had to go to 1/12. It looks like now it might be here to stay. I'm not sure if taking Lantus (which tells my beta cells to make less insulin) is confusing my body, or if I just happened to get the Lantus at the right time and things were going downhill rapidly. These new settings are working a lot better, but I'd still like my fastings to be better, too. I have to give the Lantus a chance to work, though. I might be able to increase a little, but since I'm taking 5 units and my total basal need (according to John Walsh) is around 11 units, I don't have much room to make changes. I don't want to end up not being able to exercise, for example.

But! My husband got a job. He interviewed Thursday and they said they'd let him know Monday. They called Friday morning with the offer and he starts tomorrow! It's with a cancer research lab. J. also got one job offer so far, but is interviewing tomorrow with another company and hopes to hear back tomorrow also from a third company he interviewed with. It's a good offer, though. We also found a house! It is absolutely wonderful, lovingly cared for, and beautifully landscaped. There have been a few issues (the application process took a long time, they just found a leak under the house), but we still think it will all work out. We're moving in at the end of the month. And if that weren't all, someone just told me that Washington State has a new law (since we lived here before) about covering diabetes supplies. So my insurance company can't place all these restrictions on coverage for insulin pumps. I may still have to pay the deductible (she didn't but doesn't know why not), but it looks like there are a lot fewer hoops to jump through! I just got passed to a new MM pump rep and she said she'd have the people who deal with insurance look into it for me!

Saturday, November 18, 2006

Meme time

The Procrastination Meme

Explain what ended your last relationship?
She went away for the summer and we both found someone else.

When was the last time you shaved?
I think 1993.

What were you doing this morning at 8 a.m.?
Turning off my alarm and starting the coffeemaker. Possibly testing my blood sugar.

What were you doing 15 minutes ago?
Reading the highly inaccurate CNN writeup of the student who got tasered.

Are you any good at math?
I am okay at math, but terrible at arithmetic.

Your prom night, what do you remember about it?
Standing in line for three hours to get pictures so I could prove I was there and not get grounded, followed by 15 minutes of dancing before it ended.

Do you have any famous ancestors?
Not that I know of. A small military airport in North Dakota is named after one of my relatives, though.

Have you had to take a loan out for school?
A loan? Ahahahahaha.

Last thing received in the mail?
Diabetes Mall catalog.

How many different beverages have you had today?
So far just coffee. It's early.

Do you ever leave messages on people’s answering machine?
Does anyone still have an answering machine?

Who did you lose your CONCERT virginity to?
Well, I attended an Elvis concert in the womb.

Do you draw your name in the sand when you go to the beach?

What’s the most painful dental procedure you’ve had?
It's not the procedure that's painful, it's the whole time before the procedure.

What is out your back door?
I don't have a back door yet.

Any plans for Friday night?
Heh, it's only Saturday morning. Probably watch tv and pet the cats.

Do you like what the ocean does to your hair?
I've never put my hair in the ocean.

Have you ever received one of those big tins of 3 different popcorns?
Yes, once. I think I ate the whole thing in a day, ugh.

Have you ever been to a planetarium?
Yes, and I wasn't even stoned.

Do you re-use towels after you shower?
Yes, I don't have a vast collection of towels.

Some things you are excited about?
Getting Lantus, talking to the pump rep, my husband getting a job.

What is your favorite flavor of JELL-O?
Sugar-free watermelon.

Describe your keychain(s)?
I have a Mexican flag that was given to me by one of the friends that taught me Spanish, back in 94, and a thermometer I got at a store.

Where do you keep your change?
I don't carry cash, so I don't have any change.

When was the last time you spoke in front of a large group of people?
Probably in one of my classes, so back in April.

What kind of winter coat do you own?
I just got a long coat with a hood, but the hood buttons all came off. Doh.

What was the weather like on your graduation day?
Which one? Well, I guess it was bright and sunny at all of them.

Do you sleep with the door to your room open or closed?
Open or our Siamese cat gets very perturbed and wakes us up.

Wednesday, November 15, 2006

Super endo #1

So I saw my old endo on Monday, without the nurse, so I got 15 whole minutes! It was amazing. He is seriously the best. Once again he said he wished all his patients were like me. Ha, I wish all doctors were like him! He is one of the few people who really understands how hard I work at this.

He did give me the Lantus scrip (he asked first if I wanted that or Levemir). I'm supposed to start off at 5 units and he wrote on the report that I could adjust my own dose. He said, though, that he couldn't just say I'm a Type 1 because he had no proof (antibody test) so what he did instead is wrote in the report that he is treating it as LADA and that I am "in all probability an early subacute type 1 diabetic." That was good enough for me. He made it really, really clear.

He told me they just did a writeup of an Edmonton protocol study saying that people who retained some small islet function later on were diabetic again but no longer had dangerous hypoglycemia, i.e. some insulin production will prevent it. Which is why I need to take care of my beta cells by being on a long-acting insulin. Point taken. He said that he thought my numbers looked great for pregnancy (he always discusses pregnancy with young female diabetics), although I personally disagree. He said his only concern would be that psychologically it would be tough for me to handle. We've never even discussed that, but he's absolutely right. The constant insulin dose adjustment and running really low would drive me nuts. I'm definitely not ready for that. He did say that I would need to be on a pump and wrote it on the report, I think to emphasize that pumps are Good.

He said that I'm an excellent candidate for an insulin pump and he'd write the prescription right there on the spot, except my insurance won't pay for it until January. He wants me to keep him updated, and he said to let him know when I get my pump.

Sunday, November 12, 2006

Tucson is hot

I am back in Tucson. My old endo has agreed to see me on Monday. So obviously I am freaking out about this endo visit. It's on Monday at 2. The problem is, I am 99% sure that he will argue with me about revising my diagnosis. I am about 75% certain that he will ultimately say no despite all my arguments. I think so because he made a conclusive statement on my lastreport that it wasn't Type 1, based entirely upon the unpositive antibody test. (They can't even accurately say that the test is negative). So, I need suggestions. I do have arguments, but I am a terrible arguer, so I can't guarantee that I won't screw them up. I'm also naturally unconvincing and it's a tough obstacle to overcome in general. Also, I will at most have 5 minutes of his time to cover everything in the entire visit (and I suspect we will be covering my decision to stop taking the metformin). I even have a book of articles by endocrinologists (that support me) but I seriously doubt he would even look at it - it would take too long. So, what should I do? Would it help if I made charts?

Characteristics of LADAYes
Positive GAD65 Antibody test

Thin and active

Quick progression to insulin dependence/ failure of oral meds

Intermittent beta cell function

Lack of or very low insulin resistance

Rapidly falling C-peptide

Normal blood pressure and triglycerides

Characteristics of Type 2 present
  • No positive GAD65 antibody test

Possible negative consequences of being diagnosed as Type 2
    That have already happened

  • Nonspecialists see insulin treatment as unnecessary to maintaining health, especially due to small TDD

  • Timely treatment and more frequent appointments are denied due to perceived lack of "seriousness" of Type 2

  • Nonspecialist ignores C-peptide levels, history, and insulin dependence that indicate Type 1 (or at least similar treatment) simply because diagnosis is Type 2 - treating the diagnosis instead of the patient

  • High bg of no concern to nonspecialist

  • Specialist's office assigns low priority for scheduling of appointments due to Type 2 diagnosis

  • Inappropriate medical advice given. i.e. "eat fewer carbs and exercise more" based on false assumption of high carb intake and infrequent exercise due to Type 2 diagnosis - a waste of both time, money, and opportunity for appropriate treatment
  • Perceived as neurotic and therefore concerns are taken less seriously, due to actions such as frequent daily bg testing which is perceived as unnecessary and excessive for Type 2s

  • Negative, sometimes openly hostile reactions from Type 2s in support-type situation due to having nothing in common with them

  • Inability to gain access to Type 1 or LADA support resources despite their appropriateness

    That have not yet happened but are possible

  • Inability to obtain adequate insurance coverage of treatment due to Type 2 diagnosis

  • "Sick day" assistance not available from primary care doctor

  • Presentation at ER with moderate or high ketones results in bottom priority once Type 2 diagnosis is discovered in records, resulting in several hours' long wait before ketones even confirmed or treated

  • Emergency treatment results in inappropriate action because "Type 2" diagnosis indicates overproduction of insulin and nonseriousness to most providers

Thursday, November 09, 2006

D-Blog Day

Today is D-Blog day. I think I am supposed to talk about living with diabetes, but I don't really have anything to say about that. So here is a different post on something important: LADA (Latent Autoimmune Diabetes in Adults).

This information comes from research, but mainly from experience and reports from out "in the field."

LADA is autoimmune diabetes just like Type 1, but it is often misdiagnosed as Type 2. That's because it occurs in adults over 25 and because the onset can take 6-8 years. (While Type 1 can occur at any age, the onset is sudden).

How to tell the difference between LADA and Type 2:

- Positive antibody test -- while a negative antibody test is not conclusive, a positive result indicates Type 1 or LADA.

- Weight -- Type 2s on the thinner side are very uncommon except in certain genetically susceptible subgroups of Native Americans, Asians (South Asians, Japanese), Hispanics, Scandinavians, and African Americans. It would be extremely unusual for someone very thin or underweight, and/or in great athletic shape to develop Type 2.

- Family history. Someone with a long family history of diabetes is more likely to have Type 2, although it could be argued that many of these could be unrecognized cases of MODY.

- Weight loss -- Unexplained weight loss before or around diagnosis is associated with Type 1 or LADA, *not* Type 2.

- Ketones -- Moderate or high ketones are rare in cases of Type 2 and generally only occur in people who have had Type 2 for a very long period of time and no longer make insulin. Moderate or high ketones at diagnosis indicate Type 1 or LADA.

- Progression to insulin -- LADA results in insulin dependence much sooner than Type 2, even within a year of diagnosis. This is working from the outmoded belief that insulin should be prescribed when it's no longer avoidable, though.

- Response to oral medications -- LADA does not respond well, or for very long, to medications used to treat Type 2.

- C-peptide -- This level will decline rapidly as compared with Type 2. In some people in the very early stages of LADA, C-peptide may actually be elevated and seem to indicate Type 2. However, the ensuing quick decline in C-peptide is indicative of LADA.

- Insulin resistance -- LADA is not associated with insulin resistance, although see C-peptide.

- Triglycerides and blood pressure -- these are usually elevated with Type 2, but not usually with LADA.

- Hypoglycemia -- anecdotal evidence suggests a history of hypoglycemia prior to diagnosis might be associated with LADA.

- Inconsistent blood sugars -- The honeymoon phase in LADA can last several years. During this time, the beta cells often work or not work somewhat intermittently.

Why does it really matter if it's LADA or Type 2?

- Seriousness -- Sadly, Type 1 is treated more "seriously" and aggressively by doctors and insurance. It can be difficult to get adequate treatment or have insurance pay for it unless one is classed as a Type 1 rather than a Type 2 (insurance companies only believe in two types of diabetes). Insurance companies will often only cover insulin pumps for Type 1.

- Treatment -- LADAs should be treated like early Type 1s, not like Type 2s. Early treatment with insulin is believed to reduce the workload on the beta cells and preserve their function longer. This is important because retaining some insulin production for as long as possible reduces hypoglycemia and the risk of DKA. Also, background insulin can reduce the danger of the beta cells working intermittently.

- Danger -- LADA is subject to the same dangers as Type 1. A few people are diagnosed in DKA (usually as Type 1), but after treatment have a sort of "remission" due to the extended honeymoon period. Still, DKA can occur on rare occasions where insulin production suddenly stops.

So how can I tell if I have LADA instead of Type 2?

- positive antibody test (you can stop now) or low C-peptide?
- thin or active and in good shape?
- unexplained weight loss?
- no insulin resistance?
- have you had moderate or high ketones?
- high or variable blood sugar despite oral medications?
- quick progression to insulin?

Tuesday, November 07, 2006

Well, okay, then

S called this morning and said that the GP would not give me Lantus. He apparently thinks I don't need a basal insulin and that even half a unit of Lantus would cause dangerous hypoglycemia. I know he's wrong, but I can't convince him. He said to wait 3.5 weeks until I see the endo.

So, since I don't need a basal insulin, I decided today to stop acting like I did. I didn't eat every 2-3 hours so I could cover basal with Novolog, I didn't exercise after taking insulin and not eating. It's only 6 pm, kids, and I'm already so miserable that I don't know if I can stick this out for a week (presumably to try to prove it to the dr), much less the 3.5 weeks until I see the endo (to prove it to her). I can't express enough how I didn't want the chronic fatigue and constant illnesses to come back, and the fatigue definitely came back today. I don't have any energy; I don't even feel like reading because then I won't be asleep. I haven't felt this crappy in four months.

Just a few weeks ago


My fasting is in range today because when I went to bed last night my bg was 66.

Monday, November 06, 2006

Onward and upward

I called the doctor's office first thing this morning, trying to allay my impatience. They were able to get me in today.

The doctor was pretty hesistant about putting me on Lantus. Understandably, since most people don't go on it right away and he is a GP. He said he wants to see my numbers first, so I spent four hours (it seemed like one!) making an Excel spreadsheet. I managed to drop it off at 5, but of course on the way over there I realised I hadn't broken out the number of extra units I'm taking per day to cover basal. Which is exactly the information he needs and hopes to get from the numbers. Oh, well. At this point I have to hope he can figure it out himself. It's actually only 2-3 units, but I definitely need more and more coverage. Part of why I had to make such a complicated spreadsheet is that I've gone to great lengths to keep my numbers down, so it's not completely obvious from the usual set of data that my basal is running higher. For example, around 10 pm I work out, take insulin, and don't eat anything. If I can get down to 70-80 that way, then I will wake up around 100. So not the way to do it, though.

My labs came back!
A1c: 5.1% (this one I believe. Too bad it didn't last, though.)
C-peptide: 1.0 (Range: 1.0 - 5.0)
Islet Cell Antibodies: undetectable
Anti-insulin Antibodies: undetectable

Bad news in that we still don't know what's killing off my beta cells so quickly. But good news in that my C-peptide is now low enough that my insurance company is supposed to pay for an insulin pump! Yay! Now all I need is the prescription. Making the insurance pay means I can't get one sooner than January, but I'm already kind of resigned to that. Heh, I think S, the medical assistant, was pretty taken aback when I cheered and got excited about having a low C-peptide!

Saturday, November 04, 2006

Another day

I've tried to stay away from documenting every day but it's difficult sometimes. Today I woke up at 103 (usually 83-89) and stayed above 100 all day, until 5:30 which is usually when my bg starts dropping. Even then I only dropped to 94; it's usually 65-75. Of course those sound like great numbers...for a diabetic. But considering it's a 10-20 point difference when things have been consistent for a long time, I'm a little concerned. I've had a basal spike around 10 pm for the past three days as well.

I'm a bit frustrated because I don't think Lantus can deal with this problem, but nothing else (short of a pump) would really work, either. What I need is to talk to a well-informed endo who can explain to me whether taking Lantus would result in lows or not (assuming I didn't exceed my total basal needs). I'm not sure an endo would even prescribe Lantus to me at this point, either. I don't know if I can do a pump yet - I have to test allergy and pain issues and find out if the endo will prescribe one. I could be having another massive beta cell failure and it's possible things will get bad before I can see the endo. But don't worry about me; I worry about every possibility because it's how I adapt to change. I just deal with everything that happens, when it happens. I'll deal with this, too.

Wednesday, November 01, 2006

Art or science?

Some days, despite the 6-8 shots I take, it's easy to forget I'm diabetic. It's easy because I feel better than I've felt in years (maybe even ever), because my blood sugar stays in the tight range where I don't have any symptoms, because managing my diabetes is more like a science than an art right now. Then, a day like today comes along. For various reasons lunch was delayed, so my blood sugar was in the lowish range when it was time to eat. That's just my body, not any lasting insulin effects. It had been that way at least 30 minutes, so I was getting a headache and feeling cranky. Then some distracting things happened, it being Halloween. I forgot to take my second lunch injection, 30 minutes after the first one. By the time I remembered, it was 20 minutes late. My bg had gone up 100 points in about 25 minutes. This hardly seems fair since I read that you can only lower bg at a maximum rate of 3 mg/dl a minute. It took three hours to get it back down to the "safe" range.

Since I'd had a big lunch I wasn't that hungry for dinner. We stopped and got bubble tea instead. I can't have it very often because it doesn't fit into my (personal) meal plan unless I skip a meal. It was delicious and I was sure I'd counted it correctly. My bg was within range for 3 hours, until I got a 45 point spike. This only happens with fatty meals, right? Right? I ignored it, because it was in the "ignore it" range - I figured it would go down enough with time. Two hours later and it's up another 20 points. I took a half unit correction even though I wasn't in correction range yet, because I'm afraid of what will happen if I go to bed with that number. Normally I wouldn't be, but things aren't acting like normal. I don't have an explanation for the spike other than most of the insulin wearing off. Which could mean that the profile for the carbs I ate was different than it's been. The other explanation would be a basal problem, which is too tricky for me to contemplate right now. Usually I can expect at least a 20 point drop if I start out in the "ignore it" range and wait a couple hours. But I can guess how this might sound to some of you.

The thing is, I'm just not ready. I put all this effort into management because I get consistent results. Today I spent several hours with my bg out of the "safe" range and as a result I'm completely wiped out. "Safe" range is safe from chronic fatigue. But for a couple weeks now, I've been getting unexpected basal numbers. Not diabetic range, but unexpected. I don't know if my pancreas is having a party lately (it has good days and bad days), or if this means my basals are finally going. I'm not ready for that. I so wanted to get on a pump before it happened, so I would have all the programming down. I don't know if Lantus would work - I definitely have daily patterns and I know what all of them are. Some have advised me that my pancreas would back off on insulin production if I took Lantus, so I wouldn't go low. Yet it's hard to believe that, though, when without intervention I have hypoglycemia every day - caused by my pancreas. My only real option would be to live with higher basal rates skewing things at certain times of day, and I can't handle the thought of being already near the top of the "safe" range just from basal problems. That means I'd have to overbolus for meals to fix it, and that is a dangerous game. I've never had a severe low and I've always put a significant amount of effort into avoiding any situations where I'd need assistance because I can't count on getting it.

I'm not ready for my diabetes to be an art and not a science. I'm especially not ready to go into the endo's office with artsy-type data instead of sciency-type data. I can tell her what my patterns are, but why would she believe it if there are now confounding factors? I need to have a strong case and every unexpected number weakens it more. If this wasn't enough to worry me, I'm waiting to get my labs back (and they hadn't yet ordered the ICA!) and I can't see the endo until the 29th. Now this entry is long and broody but I guess it explains the title of my blog.