Gold Star (or better put: Score 1 for Michelle!)

Ok. So been a big long busy week of activity on all fronts.  As such, let's roll back to last Thursday and start there, shall we?  Side note - did  you know that last week was the 3rd Annual Diabetes Blog week!? Who knew?  Guess I'll have to do some sort of fancy themed piece next year. One thing about finding this out after the fact is that I do have time to plan ahead.  

So last Thursday was a big day on the medical front as I had appointments with both my endocrinologist as well as my first appointment with the diabetes counselor.  We'll go chronologically for ease - so we start with the endo doc.  I think it is important to give you a visual of how adorable my endocrinologist is. She is a teeny Iranian woman who is petite in both stature and size and compensates with impressive heals. I feel like a giant around her however and thus I'm certain that I have terrible posture during my visits.

We started with the what is now normal rigamarole of downloading my BG numbers from my meter. Luckily I do work for a research firm, so the data end of this disease I do find quite interesting. As did she in this case as she was quite impressed with what she saw and kept saying, "This is so great Michelle - these numbers are really good." For all you medical types out there, I have been averaging around 130 on the whole and only had maybe two readings over 200 in the last 10 days or so.  Considering my last A1C showed my average glucose around 335, this is a HUGE improvement.  So much so that my doctor wants to me to get my AC1 run again in 6 weeks rather than waiting another 12, which was the original plan. She was very excited and exclaimed how she thinks we'll see a big change and let's run it early as she doesn't want to wait.  

So I took this to mean I must be doing something right.  Right? I mean is it weird to feel some pride in getting a gold star on your diabetes care?  I suppose it's a bit like: "Hey you are doing what you should so you don't die. Right on!"But I'll take what I can get I suppose.  I have always been good at following instructions, so in a way, this whole management approach of TEST, COUNT CARBS, TAKE INSULIN, REPEAT, is really right up my alley. 

Following the good news of my doctor's visit, I went on to have my initial appointment with my new counselor (at least for the time being, as I'm rather skeptical about the whole thing).  So the counselor is a licensed clinical social worker in the process of also getting her certificate in diabetes education. For ease I shall refer to her by her title of LCSW.  

So I think the problem (problem is the wrong word, let's say issue?) I find with counseling is that I'm not unawares of their methods. I've gone to more than a few 'feelings' exercises over the years (RA training, anyone?) that I know why they are asking the questions. What they are getting at and thus I start a bit stand-offish about the whole thing. But after all the stressors of the past 5 months, I did think it would be good to vent to someone other than family and the co-pay was reasonable.  

Just as I thought - weird. Helpful I suppose. But so is my Xanax prescription and I don't have to spill my guts for it to help me out. She suggested that Nathan come with me to a visit as this whole mess is playing out with him too and it might be good to all hold hands and chant together or something of that nature.  We'll see. She seemed like a nice enough lady so I figure I'll give it an honest effort and see how it helps. There is an obscene amount of items inscribed with the word 'Peace' in her office however. 

Aside from the doctor's appointments, this past weekend we hosted a "Come Eat Our Carbs" party and had about 20/25 folks come over to the house and help in the consumption of carbohydrate packed items.  I made an enormous bowl of pasta salad along with some chocolate cupcakes and gave out party favors of Annie's fruit snacks, Israeli cous cous, sugar and flour. A grand time was had by all.  A big thanks to everyone that came out. 

Monday saw another visit to Chandra, my dietitian, which also resulted in a lot of positive feedback about my numbers.  Enough consistency and improvement to defer my next appointment by 6 weeks or so when initially I had been told I'd be seeing someone weekly until I got the swing of things.  

As has been the case with Chandra, we had a nice time and a few laughs. She gave me some good recommendations on how to approach my insulin, particularly in reference to exercise. I'm currently having some low dips when I exercise. Which can happen, however since my pancreas is still doing a little something, I tend to dip a bit more significantly. As such, I either have to up my carbs prior to exercise or back off my insulin a bit.  All good things to figure out as Nathan and I are starting to get back in our running routine and are in training for the Wharf to Wharf in Capitola in July.  

We also talked more about pumps as this is definitely a concept I'm becoming more open to dicussing.  In my last post I talked a bit about the Omnipod which is the patch pump, which I have now seen in person. I also saw the other two major insulin pumps on the market. All are about the size of a pager and aside from the Omnipod which sticks onto your skin, the other's are usually worn on a belt or in a pocket.  Chandra was telling me that you can also get straps for when you wear dresses where they affix to your upper thigh, like you're a spy or something.  A lot to think about but it was nice to get a better feel of what they are and how they function so I can be more educated if/when the time comes to use one.  

It's pretty amazing on the whole when you start seeing all the technology that is out there for diabetes care and management.  I was just reading today about the prospect of using nanotechnology among other things in new ways to track blood glucose levels. Cool stuff. Something to look forward to I guess. 


Getting the swing of things

So my numbers are getting better, for the most part staying under 200 and even having a run of all normal BG levels over the past week.  If anything I'm now getting more concerned about going to low why I figure out my insulin-tolerance as I've already had two bouts of hypoglycemia during this same span of time.  I did however enjoy the sweets I got to each while correcting the issue however :)

I'm mastering the finger sticks, they barely hurt, save for my pinkies. I think I just need to toughen those suckers up however as they just don't see the same action as the others. The insulin shots are not so bad thus far, on the pain front that is (as they are certainly obnoxious). For now I'm taking two different forms of insulin. I take a fast-acting insulin to correct prior to each meal that lasts about 4 hours and then once a day I take a long acting insulin that works for a 24-time period with the goal of keeping my fasting glucose down.  

The long acting insulin (Lantus), I found to be a bit more painful when injecting. This seemed rather odd to me as I have been using the same needles as I do with the Novolog (fast-acting insulin) and those shots can often be done without any pain if I choose a healthy pinch of fat as the injection site.  However, since the Lantus is long acting, it starts to crystallize as it enters your system making the actual injection hurt more than the other.  Turns out, the Lantus is truly a more painful shot.  I thought I was maybe being a bit of pansy about this shot so it was nice when my dietitian/CDE explained the particulars of the drug. 

On the insulin front, I have been giving more thought to the pump concept.  Overall I find the concept really difficult to swallow. Don't get me wrong, I see the appeal. And I imagine, after another 6 months or even a year of shots, the pump is probably going to look rather appealing.  It's the tubing and the catheter in your tummy and the idea of this tether that freaks me out.  

I've already been told by all interested medical personnel that when the time comes for babies, I will have no choice but to get a pump as pregnancy will require additional insulin and even more rigorous monitoring. As such, I imagine that time could prove a trial period for an insulin pump.  

In researching however, I did stumble across quite a few 'patch' insulin pumps which caught my eye as a possible solution.  The primary one being the Omnipod, which is the patch model that has been around the longest, although I found at least 5 other models out there (some in develop and some on the market).  The concept is a insulin pod that affixes to the body and then via a wireless PDA of sorts gives out a basal dose of insulin, with the ability for on-demand (as it were) insulin.  Not even sure if our insurance will cover this type of device, or if I'm emotionally ready for it, however it was really cool to see that there was a middle ground of sorts being shots and tubing for my diabetes management. 

I'm off to the endocrinologist again this week, Thursday to be specific.  Until everything is under control, I'm to see either the doctor or my dietitan/CDE (Chandra) every week for the next few months.  Thus far, I think they are enjoying me as a patient as my dietitan/CDE said, perhaps a little too eagerly, that they are excited to work with me and think I'm going to do really well with this. I do like to over-achieve so this was really nice to hear. Plus I imagine that not all their patients are super proactive or even interested about getting on board with all the details of what this diagnosis entails. While last week, for example, I literally had 20 questions to ask Chandra, all written down in a cute little notebook (specifically for tracking this), alongside all the meals I had eaten since our last visit. 

Aside from seeing the doctor, I've also been asked to have a talk with a diabetes counselor. I suppose to make sure I'm not on the edge of a nervous breakdown after having been inundated with bad news after bad news after bad news for the past six months. I don't think I'm am. However, I suppose you never see the one that gets you, so maybe I'm not holding it together quite as well as I think I am? I guess we'll see what she has to say soon enough...




Science post!

[guest post from The Husband]

One thing that I've found, since beginning the crash course in diabetication last week, is that many people aren't clear on the difference between the two main diabeteses.

I'm going to go ahead and present my understanding as it stands today- there's going to be gaps in the info, and take everything with a grain of salt because I'm learning all of this as fast as I can.

All types of diabetes involve the body's ability to metabolize sugars. Normally, your pancreas produces insulin, a hormone that stimulates cells to uptake blood glucose and use it for energy. Diabetes interrupts that process and causes elevated blood glucose levels, which put a lot of stress on the body.

Type 1: This is the type that the lovely wife was diagnosed with. Type 1 diabetes is also known as "insulin-dependent diabetes" because people with the condition produce no insulin and are dependent on an outside source. The scientific community is not entirely sure what the cause is, but it is an autoimmune disease caused by the immune system attacking the pancreas. There is no known method of either preventing or curing T1D at this point, however, it can be managed through monitoring of blood glucose levels and administration of insulin through injection or other methods.

Type 2: aka insulin-resistant diabetes, is caused by continually elevated blood glucose levels causing the body to become resistant to the insulin it produces. The body still produces insulin, but the metabolic loop begins to break down because as insulin becomes less effective, you crave sugar more because your body feels like its not getting enough energy. In contrast to T1D, T2 is caused primarily by lifestyle choices as well as genetics.

I'm looking forward to continuing to learn about Diabetes- I've always been interested in biology, so learning about the chemical and hormonal pathways involved in diabetes has scratched the biology itch for me. Look forward to more science posts, though I also want to contribute a little about my experience in all this and what I'm going through. If you have anything to clarify, add, or if you'd just like to point out where I go wrong, please say so in the comments.


Let's talk medical gear

So as I see it, the medical gear for the 20-40 year old or really just a person such as myself who is concerned with asethetics, is really an untapped market. Sure there's some fun stuff for the younger bracket with T1D but the adult market on the whole is in need of revujenation. So many medical things are drab colors and old school designs (and I'm not talky retro-hipster designs).  

As far as I'm concerned, if I have to wear it or carry it, it's going to look good. 

Today we talk medical ID bracelets.  Let's just start by saying thank god for Etsy! On the whole, I'm not super stoked on the concept of broadcasting my condition on my person whenever I am out and about. But until I suck it up and tattoo my wrist (which is not out of the question - but I feel like a week into diagnosis is a bit soon, no?) - medical ID tags it is.  

After scouring the place for all things handmade, I found a winner - Mesa Dreams Leatherwork! Mesa Dreams makes handcrafted leatherwork and also has vintage native jewelry.  Aside from luggage tags, dog collars and cuffs, I found a section for medical alert bracelets.  My leather ID bracelet was inexpensive (around $20 including shipping, some versions were even less), and it was handstamped to my specifications and choice of stain. The best part you ask? It doesn't scream "I have an ailment - treat me with care," but it would definitely do the trick if I was in need of medical assistance.

Note to self: Add 1/4 to 1/2 inch more to the diameter (bit more wiggle room would be good for the next one).

Have a look see if/when you are in the market for handmade leather goods - I highly recommend.  Plus it arrived in less than a week!

I am still in need of something for more formal occassions however... 



So remember how I mentioned having the best primary care doc.  Well what I didn't mention is that she also has great relatives. My PCP was nice enough to ask her cousin, who is similiar in age and who also only recently was diagnosed with T1D, to speak with me about all that going on. 

We were able to touch base by email this morning and this evening I got the chance to talk with her for about an hour about all that's going on.  I was a little unsure at first how quickly I might try to reach out to others in my situation.  To be honest, I probably only did it this quickly as I had a follow-up with my PCP this morning and I wanted to be able to say I followed up with her cousin since she was nice enough to arrange this. 

I'm really glad I did.

It was comforting to talk to someone who isn't just being sympathetic but truely understands and has lived what I have and what I will.  To hear that things will get better. To hear that things are super shitty right now and that I can be mad and upset and everything I'm trying so hard to keep under wraps.  To get recommendations about future care and other sources of information. To hear someone else's story and also hear my own.  

One wall that I've been coming up against is finding resources (be it websites/etc.) that are specific to my case. late twenties with late onset type 1 diabetes.  The divide seems to be either young kids/youth or skewing more towards the older end of the age spectrum. Aside from age, the late onset is probably the harder subset to locate. Although I'm certain I can learn from those that have had T1D since childhood, having grown up with the disease is undoutedly very different than getting it late in life. Beyond that, it would be nice to find folks who are local.

If you happen to know people that fit the listed demographics, send them my way. Perhaps we can start our own group. My to-do list is getting really long.