Type 2 and Parkinson’s gene linked

The following headline on the Diabetes Blog caught my eye this AM: Type 2 diabetes directly linked to one gene causing Parkinson’s. According to this article, the scientists concluded that biochemical changes brought on by diabetes can switch off functionality of a the PINK1 gene, causing Parkinson’s. I’d be interested to see the study itself to find out which biochemical changes they are referring to – are they the result of high blood sugars or perhaps related to insulin resistance? Is Type 2 only mentioned because there were no study participants with other kinds of diabetes? My father was diagnosed with Parkinsons shortly after I was diagnosed with diabetes, so this link gives me even more reasons to keep those sugars in tight check.

How is everyone? Things are good here – just chugging along with low-carbing and the occasional correction dose with insulin. Life is busy and I’ve fallen off the obsessive record-keeping and food-measuring wagon, but am still testing frequently and exercising. My numbers are looking good, save the occasional morning when I hover in the “helpless zone” of 130-140. 140 and above are fixable, but 130 is a tricky number for me because it’s too low to correct with the 1 unit minimum that my Humapen can do, but high enough that I want to do something about it. At my next appointment I plan to ask for a prescription for and a lesson on good old fashioned syringes and insulin vials. I love the convenience of the HumaPen, but now that I’m mostly using insulin for post-meal corrections, 1 unit doses are more often than not too large. Why Lilly would make a pen that allows half-unit increments only after the 1st unit is beyond me.

Reunited

A chapter in my Insulin Experiment has come to a close. Over the long weekend, I ditched my mealtime insulin and returned to the safe arms of low-carbing and Starlix, and a funny thing happened: my post-prandials and fasting blood sugars magically returned to the 80-100 mg/dls. Amazed and relieved but still a bit nervous, I decided to finally take the time (something a mother of a MODY patient that I encountered on Dr. Bernstein’s forums suggested a month or so ago) to write a long email to the experts at Centre for Molecular Genetics at the Peninsula Medical School and Royal Devon and Exeter Hospital, Exeter, UK and ask them what they thought about insulin vs. sulfonylureas.

Professor Hattersley wrote me back with a world of information, and I learned that in his experience, staying on oral medications was the best long-term option for MODY patients. Turns out they have observed MODY patients actually deteriorate on insulin. Whoa! So I am finally submitting to what my doctor and PA told me all along, which was that the Starlix was not putting me at risk of prematurely burning out my beta cells. Professor Hattersley even suggested an option for the future that I had not considered, which was a long-acting insulin taken once a day with Starlix at mealtime, and confirmed what I’d experienced, even with the insulin, which was that a high-carb diet makes no sense for a MODY diabetic.

I still have a lot of info from Professor Hattersley to process, but for now I’m confident that I’m making the right decision: I will resume using Starlix at meals, and will use insulin for correction doses and to cover the occasional high-carb meal. Injected insulin was simply no match for my own insulin. Obviously I’ll need the insulin full-time when my husband and I decide to breed, but we’ll cross that bridge when we get to it.

In other insulin-related news, I know who I’m calling first thing tomorrow morning…

Anxiety Always

Gah! Another day of slightly elevated blood sugars. In order to simplify my troubleshooting, I think I’m going to have to stop using the I-Port for a week or so. I’m not happy about it but I’m more even less happy about waking up above 100 and having problems getting under 130 all day long. Other possibilities:

• hidden infection or impending illness (I feel fine though, gums and mouth fine, etc)
• insulin gone bad (I just changed my Humapen cardridge on Saturday)
• lingering repercussions from The Pizza (could one bad day really throw me for this long?)
• my meter is off (seems unlikely but I could make my newer backup meter my primary just in case)
• my strips are bad (am almost done with this vial so will be able to check that off in about two strips)
• hormones (possibly, but that usually happens on the 4th week of my birth control pill, not the 3rd)
• I’m developing insulin resistance and need to adjust my carb/insulin ratio

That last possibility scares me the most – is it possible that after only a month and a half of injecting less than 15 units of Humalog a day, I’m becoming resistant to it? Is a carb/insulin ratio of 1 unit per 8 carbs in the A.M. and 1 unit per 10 carbs in the P.M. excessive for someone under 115 pounds? Is it normal to have to increase your carb/insulin ratio after only a month and a half of usage? I always understood that MODYs were very sensitive to insulin, so of course this makes me wonder – what if I’m not MODY after all?

The other thing that has been worrying my lately is this constant anxiety surrounding losing my basal insulin production. Every morning when I wake up and test, I pray the number is under 100, and every time it isn’t, I think “well, this is the beginning of the end”. I know that sounds terribly melodramatic, but I realize just how lucky I’ve been to still make some insulin and make it in a consistent manner, and I am determined to preserve that functionality! Then today I was doing some googling on insulin resistance and MODY and came across this terrifying statement:

Except for MODY2, all types of MODY are characterized by glucose intolerance and progressive ß-cell failure and can lead to the long-term complications typical of diabetes.

Progressive beta cell failure?! My PA also seems to believe that my MODY will inevitably progress, but I still don’t want to believe it. What if the MODY patients they based that observation on destroyed their own beta cells with high blood sugars or oral medications?

All this makes me want to shell out for the genetic profile needed to determine once and for all what type of MODY I have… but what if I spend thousands of dollars just to find out I’m not even MODY? If I did turn out to be the “progressive” type, would I regret finding it out? Or would I benefit from having some time to come to grips with the fact that eventually I will have complete dependence on insulin? What if I have MODY2/glucokinase? Would I celebrate? What is it I really seek to gain from such a diagnosis? Judging by the tone of this post, the money would probably be better spent on a beach vacation or something else aimed at restoring my mental health.

Maybe there is more I can figure out on my own. The diagnosis flowchart on the Athena Diagnostic MODY page shows a path for Ketotic and Non-Ketotic. MODY falls under Non-Ketotic. I picked up some Ketone testing strips at Walgreens last week, so next time I’m above 200-250 I will test and see what happens.

Life Support

Thesis Statement
Originally uploaded by Irish Pica.

I am amazed by Flickr user Irish Pica’s recent contribution to the Diabetes Made Visible pool. She posted photos of her thought-provoking and beautiful thesis project: a chair made of 2,190 insulin syringes – the equivalent of what the average type 1 diabetic injects in a year. Click on the photo above to read her full thesis statement and view more photos of the project.

In other news, my freshly-applied abdominal I-Port got bent and went drooly on me sometime between yesterday afternoon and this morning and I forgot to bring an extra to work. I have no idea what I may have done to bend it. This wouldn’t be such a big deal if I hadn’t eat 40+ slow-digesting carbs at breakfast. Watching my blood sugar rise into the 200s even after a correction is scary, yet I still can’t wait to get home and get another one installed. It may just be a matter of moving to a lower-carb breakfast – that way if the port goes wonky overnight, I’m not putting myself in danger of high blood sugars after breakfast.

The I-Port Report

Now that I’ve spent a couple of weeks with the I-Port, I can share a few things that I’ve learned that aren’t included in the instructions.

A properly installed I-Port does not drool.

If there is more than a single drop of insulin left over on my pen after injecting, I know my I-Port is no longer good and I can expect high post-meal blood sugars. A tiny little drop doesn’t seem to make a difference, but if there are two drops left on the needle, or drops bubbling out of the septum of the I-Port, then I’m going to have to trash it and start all over again. I’m still trying to figure out how and why a seemingly good I-Port insertion will suddenly start dribbling, but I suspect it has something to do with me being clumsy and getting it caught on things. Constrictive clothing over the I-Port is also not a good combo, so sorry ladies, but you’ll have to save your corset for times where your I-Port is installed further south or on an appendage.

A properly installed I-Port doesn’t hurt.

Any pain or discomfort lasting more than a few minutes after an install is usually an indication you didn’t do it right. I installed my third I-Port on the side of my abdomen about two inches north of my left hip-bone. The insertion hurt so bad I briefly considered what would happen if I hit the floor, but I survived. I gave myself an especially painful bolus before dinner, the found myself over 130 after an hour, so I knew something was wrong, but though maybe I was just going through one of those low pain threshold times of the month, so I decided to give it overnight to acclimate. The few times I moved in bed that night were painful, so I decided to take it off when I got up. When I ripped that sucker off I found a blood-filled cannula. Ouch! That was my first experience with pain and bloodshed and an I-Port. The second came Saturday, where I learned:

A properly installed I-Port doesn’t bleed.

Saturday I went to change a 3-day old I-Port, and after removing the insertion needle on the fresh I-Port, blood started dripping out the top. It was pretty gory, so I grabbed the phone and called the 1-800 number on the I-Port package. I wasn’t sure if anyone would be around on a Saturday, but soon I had friendly help on the line. After they advised me to remove the “gusher”, I chatted for a while with a guy who’s name I didn’t catch about my general lack of I-Port-ready real estate. Which brings me to:

I-Port Loves Flesh

I may have inherited my mom’s diabetes genes, but I was also blessed with my dad’s build and metabolism. So add to that the fact that I am petite, and I’m not left with a whole lot of prime abdominal real estate. The person I spoke with at Patton on Saturday suggested I try wearing the port where KK (the inventor of the I-Port) wears hers, which is on the backside “right below her beltline”. I even learned that some pump users put infusion sets on their breasts, but I was too embarrassed to admit that I don’t have enough fat there either. He also suggested arms, but even if I did have extra flesh there, I think it would interfere too much with my current workout routine.

I tried the upper-butt area over the weekend. The first try I installed while standing, but when I went to sit down the I-Port felt stretched and hurt, so I took it out and, rather than waste an I-Port, decided to try re-installing the same one while sitting. The seated bum installation was a win, but it only lasted as long as it took me to have to go to the ladies room. I completely forgot about the new location (a nice testament to how comfortable a properly installed I-Port is!), and it ripped right off my bum when I pulled my shorts down. Much blood was shed, but its my own fault for attempting a 2nd install – not only did I forget to clean the area first with alcohol, but I think removing it once compromised the adhesive. Will try the “lower back” area again soon, and will try not to forget about it (or maybe wear a skirt).

I imagine pump users go through the same trial-and-error with their infusion sets, so if there are any petite pumpers out there with some placement advice for me, please do leave a comment!

So despite my few installation issues, I am determined to find a way to make the I-Port work for me, because when it does work, it is such a beautiful thing! Split boluses are no longer an issue, and the little red dots that the I-Port leaves in its wake are so much nicer to look at than the sea of yellow and blue that the injections leave me with. I’ll have to upload a photo showing an I-Port dot vs. an injection site, and maybe even photograph an area for a week or two to see how long it takes to disappear completely.

It’s also worth noting how helpful and responsive, both via email and phone, the people at Patton MD have been. It is nice to know you can pick up the phone on the weekend and have more than just a call center drone on the other end. All of Patton’s employees, diabetic or non-diabetic, have worn I-Ports and done saline injections through them, so no matter who you talk to, they have at least some personal experience with the product they sell. I also forgot to mention how easy it was getting my insurance to cover the I-Port. All I had to do was provide the prescription and my insurance info, and Patton MD took care of the rest through their vendors.

If anyone out there reading this is an I-Port user, I’d love to hear from you! I’m curious to know where you wear your I-Port, where you avoid wearing them and why, and if there are any other tips you’d like to share.

I Sport an I-Port

Things are continuing to improve on the insulin front. I had a follow-up with both the dietitian and PA last Wednesday, and left with two prizes: an A1C of 5.8 (I was expecting higher) and an I-Port.

For those of you not familiar, the I-Port is a neat-o insulin delivery device that gives you one place to inject into for 72 hours, after which it is disposed of and a new one is installed. You inject into it rather than your skin, so there is no pain involved other than the normal sting associated with the insulin hitting your tissue.

I’m on my fourth day and second I-Port, and the novelty of feeling a bit bionic has not yet begun to wear off. I adore not having to hunt for injection sites, endure bruises, and remember to rotate. It’s too soon to say whether its having any affect on my BG control, but expect a full review and more photos after I’ve spent a bit more time with my new, button-esque friend.

Count to 20

Doesn’t it always happen this way: as soon as I mentally give up on something, things take a sudden turn for the better. After my terrible highs’n'lows weekend when ended with me going to bed in the 200s Sunday night, I woke up Monday morning with a normal fasting and have been sailing smoothly in the sweet 80s to 120s ever since. What changed? Counting 20 carbs per ounce of bread instead of 15. This did the trick on both my 1/2 whole wheat hamburger bun at dinner last night and for my 1/2 a bagel this morning. Insulin (and small amounts of whole-grain bread!) and I are friends again.

Looking forward to my body re-adjusting – right now I feel a bit hypoglycemic in the 80-90 range. It’s amazing and a bit scary how fast your body gets used to higher blood sugars.

The Insulin Experience: Week 2

As my second week of insulin comes to a close, I feel like I am no longer in control of my body. Blood sugars are still all over the place, including a few really unpleasant lows this weekend. I have put on 3-4 pounds in two weeks, all of which seems to have all gone straight to my abdomen because my waist measurement has increased by an inch and a half. I wouldn’t mind the weight gain if it was a) better distributed and b) wasn’t such an obvious side-effect of the insulin. My well-tuned sense of hunger also seems to be lost in the shuffle.

Today I made enough Mediterranean chicken salad to feed me lunch every day this week, so perhaps eating the exact same carefully weighed, mid-low carb meal for lunch and breakfast for the entire week will help shed some light on the situation. I haven’t yet decided what to do about my beloved breakfast – do I change it or give it one more week? I started eating my current breakfast when my breakfast of over 2 years (whole 7-grain bagel with cream cheese) suddenly wasn’t cutting it with Starlix. I cut the bagel in half (to about 2 oz), and added some protein in the form of salmon and 1 egg, 1 egg white scrambled, which comes to about 30-36g carbs depending on the weight of the bagel. Starlix could handle it fine – insulin not so much. The only luck I seem to have with it is by splitting my bolus up into half the dose before and half during or after, but even then I’m still lingering in the 130s all morning (and now have twice as many bruises ). Possible options: a) cut the bagel down to a quarter-bagel, b) ditch the beloved bagel all together or c) try cranking my A.M. carb/insulin ratio up to 7g carbohydrate per unit.

It’s hard for me to admit that this whole thing isn’t going as swimmingly as I’d hoped, but with a week and a half left before I see my PA, there is still plenty of time for things to turn around and for me to be back in control of this mortal vestibule.

Black and Blue

Every time I’ve injected and every time I’ve changed clothes and looked in the mirror over the past 48 hours or so, I’ve found myself on the verge of tears. I’m ashamed of feeling so sorry for myself, but my abdomen is spotted with yellow and blue bruises and every injection I’ve given myself in the past 48 hours has hurt, either during or after, bled. Some (like the one I just did) itch! I went a week without a painful injection – what happened? I feel once again like I have no idea what I’m doing. Am I supposed to be coming in at an angle? Am I even using the right places? What is the consequence of not picking a “fat” enough place to inject? Is there some sort of system or pattern I can use to help me remember where to inject? I’m reserving some time this afternoon to research, but if any experienced insulin users out there have any advice, please please leave a comment – my bruised abdomen will thank you.

Medical ID jewelry

At my last visit, the Diabetes Clinician reminded me that, especially now that I am using insulin, it’d be a good idea to get either an ID bracelet or necklace indicating that I am diabetic. I’d looked online a bit last week and was surprised how much more attractive my options are than they were 10 years ago when I first ordered a MedicAlert bracelet (which I reluctantly wore for about a year then lost). The one that most resembles a piece of jewelry I’d actually purchase for non-medical purposes is a charm bracelet made by America Medical ID:

Of course all the jewelry browsing made me wonder how the medical versions compared to the real deal. Long story short, this beauty, this beauty from Tiffany and Co. is now being hand-engraved to read “Diabetic”, and will be waiting for me at the store in about three weeks.

Sure, it cost more than the American Medical ID bracelets, but I justified the expense knowing that a) I’d actually want to put it on every day and b) it should last a lifetime.