Hi y’all!

I survived the swine flu. I honestly have no idea how I did though. It was horrendous. I was so weak, I couldn’t even lift a bottle of Poweraide Zero to my lips and needed a straw. Since then it has been hard to get back on my feet again.  I’ve had two rounds of IV antibiotics with about 3 or 4 weeks in between. I’ve never needed IVs so close together before. If any of you cfers are debating on getting the shot, my advice is to GO GET IT!  :)  Just make sure it’s the shot and not the nose spray.

Slowly I will be getting back in the swing of things, more blog posts, replying to email, updating the format of the site like I promised long ago.

More to come!!!

I am becoming a better and better judge of the carb count of foods.  I plan on sharing some of my carb counting tricks with you soon. Also, I now always have some Smarties on hand if I go low.  Even my friends have started carrying Smarties for me when we are out.

Just because I am learning more, and having minor success at it, doesn’t mean I still struggle with this stupid diabetes every moment of every day.  I guess you may say that I am a little more comfortable in these new diabetic shoes (not literally, even though croc’s does have some “stylish” shoes specially for diabetics, hehe).  As of this afternoon I have had two icky low blood sugar levels.  One before lunch, 64, and another low at 3pm, 69.  I didn’t feel the 64 at all until I tested. But the 69? Wowza! I felt like I was on a boat lost in the ocean. The world was going round and round. Luckily I was sitting down and had 3 rolls of Smarties within reach.  I guess it is completely normal for people’s blood sugars to drop, even down into the 50’s sometimes, but it is when you start feeling the symptoms, it is time to grab the closest sugar source.  I don’t know how true that is, but for those of us with CFRD it kind of makes sense, but not so much for those with Type 1.  That is just one more difference the two different “types” have.

I do have to admit I have fallen off my healthy eating bandwagon.  I still search for high fructose free foods, but I admit I have been drinking diet soda, which makes me crave those super sweet sugary foods, ahem… cherry sours, junior mints, tootsie rolls… YUM! But UCK! It’s been giving me these highs and lows, thanks to that evil sluggish insulin and the speed the pure sugar hits my blood stream. Not good.  BUT… over all I think I am doing a lot better than I used to because I test my sugar level MUCH more frequently. This way I know where I am at and if I need to take extra insulin I do, and if I need to dial it back I can. Testing testing testing!

I am not exactly sure why I had the lows today.  For a change knew exactly how many carbs I ate at lunch, I actually bolused a little less than I needed since I had a long walk back to work. So all logic said I would have been a little on the high side after lunch, but nooooope!  I have gained a bit of weight recently  (yeaaa me!) about 20 pounds (since September), and thanks to inhaled Aztreonam (an antibiotic I’m in a study for right now) keeping my lungs healthy, I think my insulin needs have changed.  I am planning over the weekend to really buckle down and count carbs to the exact amount I can, keeping track of my blood sugars probably 7 times a day (morning and before and 2 hours after each meal) just to see where my body is going and what it is doing.  I’ll give my numbers to my doc and she will be able to give me some advice on what changes I may need to be making with my insulin levels.  Crossing my fingers that I have the willpower to do this!

P.s. I’m thinking of jumping on the Vlogging (or is it Vloging?) band wagon. My laptop camera is worthless, especially if I am on the run… does anyone have advice of what kind of tiny portable video camera to get?  What would give me the best bang for my buck?
Thanks bunches!  Hope you all are doing well!

(oh! and I am a bit behind on my email… I haven’t forgotten you! I’ll get back with you very soon!)

Random glucose test – This is usually a fingerprick, or done while draining your arm/body of blood for other tests.  They test the amount of glucose (sugar) in your blood at the given moment.  Two random tests above 200 mg/dl is a diagnosis for diabetes.  That is kind of tricky for us with CFRD since illness is common and so is steroid use, which will give you higher than usual blood glucose levels.

C-Peptide test – I was told there is no real ability to measure the amount of insulin your body produces.  But when your body produces insulin it also produces a protein, c-peptide.  In theory if your body does not make enough insulin, you won’t make much c-peptide either.  Usually this means that your pancreas has given up the ghost and is no longer working properly.  I had this test done, as required to get insurance coverage (my crappy old policy) for my insulin pump.  Welllll… I failed the test… or did I pass it?? Turns out that my body makes enough c-peptide to qualify me as “normal” and not needing insulin.  Well… that is by far, not true.  The exact cause of CFRD is truely unknown to this date.  Of course our lil pancreases are on their way to complete self-distruction (which mine showed via a CT scan), but there is a study out there that claims the creation or use or something about the natural made insulin doesn’t work correctly.  Which is why I apparently have insulin dependent diabetes, but still have a normal amount of c-peptide (or at least I did last year).

Antibody test -  This is where Type 1 diabetics differ from all other types and exactly why CFRD is NOT Type 1 (although treatment is similar which is not to be confused with cause).  Type 1 diabetes is an autoimmune disease which is caused by antibodies that attack the insulin producing cells, the beta cells, in the pancreas.  If you have diabetes and have antibodies, you have Type 1.  If you have diabetes and do not have antibodies, you have a Type Other than Type 1.  A cure for “Type 1″ diabetes will not cure my diabetes and that is why I am such an advocate for the “Type Other”s.  It is possible for someone with CF to have Type 1, it is the same rate as for the “normal” population, but just because you have cystic fibrosis related diabetes and you are insulin dependent, this does not make you Type 1.

Urine Sugar tests – If you have too much sugar in your blood, it will spill over in your kidneys (which is not good) into your urine.  Usually one of the first tests they do when they suspect diabetes.

Liver function tests – For folks with CF our livers are at risk of damage from all the drug coctails we are required to take.  I am only mentioning this test because I know a few CF docs who try putting their CFRD patients on pills for treatment instead of insulin shots.  I guess pills are ok, but I would be hesitant because most diabetes pills have a high risk of causing liver issues…. Just one more thing I do not want to add to my list of things I need to deal with.

I am sure there are plenty of other tests I am not noting in this post.  Anyone else want to chime in?

side note: I have wondered since the extra glucose messes up the red blood cells, I wonder if it affects how oxygen, and how much of it, is carried through the blood stream (since it is also carried by the hemoglobin) which is kind of an issue for some of us cystics with messed up lungs.  I’m going to look more into that someday. But if I find that is true I am going to get even more pissed at the CF docs who put off CFRD testing (not mine luckily). *sigh*

Apparently a “normal” person would have an A1c level at about 5.0%.  My doctors suggest an A1c of 6.5% or a little lower, normal would be ideal, but that is darned hard to reach.  My docs find that above 6.5% it seems to really affect the CF lungs.  To me I really couldn’t understand what that number meant until I found a calculator online that could translate the number into something I was familiar seeing on my little meter tester thingy I use every day.  Here’s one I like, it goes both ways from A1c% to mg/dl.
http://www.accu-chek.com/us/rewrite/content/en_US/4.1.2:20/article/ACCM_general_article_2422.htm
Here’s a little chart on dLife:
http://www.dlife.com/dLife/do/ShowContent/blood_sugar_management/testing/a1c_conversion.html

154 mg/dl is the magic average number.  Personally, what I try to do is make sure I am at a safe, but lower number (preferably 85-95) through out the night since I am spending 8-9 hours at that level.  Recently with my Continuous Monitor I have found I am having a strange spike at 2:30-3am which means I am going to need to change my basal insulin rate at that time… but that is a whole different story.

Once last year I scored a 6.0% on my A1c test (yes, it went on the refrigerator)… I really doubt I am there again, it took a lot of hard work and discipline, but here is some tricks of how I did it…  Having a lower level for many hours while I am asleep made it easier to get to my goal A1c level.  When I spike at meals, I try to keep it under 200 mg/dl at the two hour mark by counting my carb intake as close as I can (IMPOSSIBLE when on evil evil prednisone), but I make corrections at the 2 hour mark if I have to (my pump figures out the calculation taking in consideration how much active insulin I already have in my system, which is why I am such an advocate of the pump, it does all the brainpower).  I have played with my numbers and found at my of 1 unit of insulin (which is an unbelievably small amount, it’s like a few drops!) for every 8 grams of carbs and my correction or sensitivity rate of 1 unit to 25 mg/dl (how much my bg number will drop with one unit of insulin), If I miss calculate my carb intake by 20 (two macroon cookies, who ever eats just two cookies?!) my blood sugar level will go up 62.5 points (mg/dl). HOLY!  That means I need to keep quite a close eye on things.  It never used to be that way when I was on shots, I was on a 1:15 ratio…. but then again, I was never in control of things on shots.

Back when I was out of control, my A1c level (at least the first one I really paid attention to) was 9.3%.  That number alone wasn’t enough to scare me.  But it should have.  The toll it took on my poor body was too much for it to handle and I have not escaped a few complications.  Nothing too scary, but annoying enough to get put on a few extra medications.  I wish I would have known then what I know now.

The Oral Glucose Tolerance Test, OGTT, has been used as the primary diagnostic of Type 2 diabetes as well as some of the Type Others of diabetes like CFRD, (once again, CFRD is not Type 1 OR Type 2 we are Type Other go look it up on the wikipedia!).  The OGTT is time consuming and fairly painless.  Like it says, the test is done by intaking glucose oraly and they test your tolerance to it.  In other words they take a few blood draws (or fingersticks) before and after you drink something like orange soda and see how your body reacts to the sugars.  If it doesn’t react properly, then the finger points to diabetes.

Getting ready for the test… Don’t eat or drink from midnight the night before, they say 8-14 hours.  I am not sure if black coffee is ok, but it seems like caffeine has different reactions to blood sugar levels in different people, so if I were you having this test I’d drink water and only water.

Next, you show up at the doctor where they sit you down hopefully in front of a TV because this test takes two hours of basically just sitting there.  Some doctors (or nurses) use a small IV to draw blood, so they don’t have to stick you mulitple times.  Others use a finger stick blood glucose meter, which you just better learn to deal with if the test comes up positive (I have to use my fingerstick thingy 4-8 times a day, sometimes more).  I had my OGT test 7 years ago, and I think they used the fingerstick method… but my memory escapes me.  …The nurse sits you down and draws a fasting level which will show what your blood sugar level is when you have no food in your system.  This alone can be enough to diagnose someone with diabetes (as it was for me).  If your pancreas does not make enough insulin to regulate the sugars normally produced in your body, even without food, more than likely you have da ‘betes, they call that fasting hyperglycemia.  Pretty much, if you have fasting hyperglycemia, you have diabetes.

As a quick note, to explain how insulin works simply, it is like a key that unlocks the cells and allows them to take in the sugar (ie glucose) and turn it into or store it as energy to use in the future.  Without insulin (made by your pancreas or by supplemental shots) it is not possible to change the nutrients into energy.  Basically put.  Without insulin, sugar builds up in your blood which wrecks your blood vessels and does some other nasty stuff.

So… back to the test.  After they draw a fasting blood glucose level, they hand you a bottle of this sickening sweet drink that is like a flat orange soda with a little extra sugar added.  If they are nice enough, they will have refridgerated it for you which helps it go down a lot easier.  (Ooh! If you are going for this test you could make a funny out of it and bring in a swirly straw and a drink umbrella!!!  Bet the nurses would be a little nicer when they stick you for blood! Wish I would have thought about that before! hehe!)  Back to the matter…  I have heard a lot of folks complain about how sweet that drink is.  But to me, when my body wasn’t absorbing enough energy from (not enough insulin to do so) I craved sweets and other carbs night and day, the warm flat sugary soda tasted so yummy.  For those of you number crunchers, the “soda” has 75 grams of carbs in it.  Regular orange soda has 35 grams in one cup… so it really isn’t much sweeter than two cups of the real thing.

At 30 minute intervals they test the level of sugar in your blood until the 2-hour mark.  They should be able to tell you right then and there what the number is.  I stole the following data off of the American Diabetes Association website it is in reference for ANYone testing for diabetes, no matter what Type (and are also used for the diagnosis of CFRD):

Fasting Levels:
Normal Fasting <100 mg/dl (mg/dl is the unit measure used in the US and what would be shown on your fingerstick meter if you are using one)
Pre-diabetes Fasting <125 mg/dl
Diabetes diagnosis Fasting >126 mg/dl
For me, I was above 126 fasting, so we already knew at that point I was screwed.

At the two-hour mark:
Normal <140 mg/dl
Pre-diabetes 140 to 199 mg/dl
Diabetes diagnosis 200+ mg/dl  (which I hit at the first 30 minute mark)

If you really are concerned and your doctor is not listening to you, you could try the test at home if you have a meter and some decaffeinated soda (doesn’t have to be orange flavor, I would prefer grape or strawberry… ooh! or Squirt!).  Make sure you do the test in the morning though because your body makes natural steroids throughout the day which will affect your numbers.  But still, if you do the test at home, it is not an official diagnosis, but it may put your mind at ease if it’s negative and you have been worrying.  Oh! And make sure you are not taking steroids or sick.  Those two can really throw off your results.

I have been quite frustrated and disillusioned by what some of my fellow cystics have said to me.  They have shown interest in getting the test done because they are showing signs of CFRD and they want to take a proactive role in taking care of their health.  Some of their doctors say, “nah, you don’t really need it” or “go to your primary care physicain”… do these doctors have no clue in how untreated diabetes affects your health? especially your CF health?!!  I just want to shake those doctors.  It’s a simple test which could save someone a lot of pain and suffering.  Untreated and uncontrolled diabetes makes you MUCH more prone to infection, which is a cystic’s worst nightmare!  Not to mention all the other crud that comes along with it….  Come on doc’s get with the program and TEST YOUR PATIENTS!  Personally, I go with the CFF (Cystic Fibrosis Foundation) guidelines as a baseline, more can be done, but less is just irresponsible. The CFF suggests that anyone (with CF of course) who is pancreatic insufficient (takes enzymes) be tested (via OGTT) every year after the age of 12 if they show signs or symptoms.  Some docs think the A1C test is enough… but I’ll get into that later.  Next post will be about the A1C test.

Hmmm… well I think that sums up the oral glucose tolerance test.  Any questions?

I’ve had a weird tingly feeling in my legs in the evenings for years now, and finally brought it up to my CFRD doc.  Turns out it could be neuropathy (nerve damage pain) which for me was caused by years of not really caring about my diabetes.  Apparently a simple treatment for the discomfort exists, over-the-counter capsaicin cream.  Yep, it is a cream made with the burnin’ hot oil that comes from hot peppers!  Who would have guessed!  I have been a bit nervous to try it.  I still have flashbacks of an old guy friend of mine who… ummmm… wasn’t so careful after cutting up peppers for salsa then went to the little boy’s room… let’s just say it wasn’t his eyes that were hurting, but many tears fell that night.  DO NOT TOUCH SENSITIVE SPOTS AFTER TOUCHING HOT PEPPERS!

My legs were super creepy crawly, driving me crazy.   The feeling is always worse when my blood sugars are bad, which they are right now thanks to the lovely Prednisone and a lack of continuous glucose monitor sensors (my refill order has been sitting on someone’s desk for the past few months, no explaination why except it is not the fault of my insurance).  I finally talked myself into giving the capsaicin cream a try.  Tried a little dab… nothing…. rubbed more in… eh, it kind of took the tingling away, a little… my feet felt like they were lathered in regular ol’ body lotion.  No cooling sensation, no burning… nothing special.  Reading the lable it sounded like it was supposed to feel like icy’hot.  Brodie, his little inquisitive doggy mind, oh boy… When I wasn’t paying attention I felt the slightest lick of his tongue on my feet.  I would have loved to see how big my eyes got when I felt that!  I was afraid his little tongue would fall off or something… I mean, what would I do if it burnt his tongue?!  then… nothing.  lick… lick…  Didn’t even faze him.  Strange… was I just duped into buying into a placebo?

The next morning when i woke up my feet were on FIRE!! Holy smoke!  Turns out that it was a bit much for my super sensitive skin.  At least I know it wasn’t just plain lotion now.  I think I will give it another try sometime possibly soon and let you know how it goes.  Definitely, I will be using much less next time.

Just as I was starting to feel better from the freakin expensive medicine allergic reaction, my tonsils started to blow up again like one of those puffer fish. (geez! can’t I catch a break??!)  Back to the doctor I go.  Turns out I got ANOTHER weird bug I have never had before.  Luckily this one can be kicked by some cheep non-allergy inducing (fingers crossed) meds.  For an extra boost I agreed to do a boost of Prednisone (evil evil evil), which has given me some lovely roid rage, blood sugar numbers that go from normal to 450 in 30 minutes and a tummy monster that can not be tamed with no matter how much food I cram down.   I am afraid to say, go away bad juju, that I am starting to feel better FINALLY.

NYT Health

Blood Sugar Control Linked to Memory Decline, Study Says

By RONI CARYN RABIN
Published: January 1, 2009

I send warm hugs to all of you!!!  Hope you are staying warm this winter (it is FREEEEEZING here!).

Take care!
~salty

Dealing with Diabetes and the copious amounts of food that the holidays bring is a very difficult thing to balance.  I thought I would share a few tips and tricks that helped me maintain control while also indulging in the feast.

First I made sure to go into the day with a good blood sugar level.  I have been generally running a little on the high side (must have an infection brewing again, or maybe it is stress?), so in the morning with my coffee I did a correction to bring myself into the 80-90 range post coffee.  Going into the day with a good level is key to keeping everything else in control.

Second, I planned ahead.  Most thanksgiving dinners include the same sorts of items;  mashed potatoes, sweet potatoes, dressing, gravy, cranberry relish, pumpkin pie….. loads and loads of carbs.  What I did ahead of time was looked up the carb counts and made a mental note.  If I indulged in seconds (thirds, fourths, hehe!) I could do so while balancing the amount of insulin I took.  I tried to choose wisely and had a small amount of the sweet potatoes, mashed potatoes, cranberry sauce, and other high carb items, and loaded up with turkey, low carb veggies, and heck, is there anything else low carb?? Not much! But that trick seemed to work.  As long as I got a taste of the good stuff my tummy was happy. I did not need to overdo it.  Now for those poor diabetics on the old style of x-amount of insulin at x-time, with x-amount of carbs, I have no idea how you deal with the holidays. That has to be quite frustrating, I feel for you.  ((hugs!))

My family had “dinner” fairly early in the day, so I was not in the mood for eating a lot. (who has dinner at noon!) I think that helped me keep my numbers from going toooo high.  I will admit, it was a “special” day and I forgave myself if I was not the “ideal” diabetic patient (hahaha! like I ever am! details to come in future posts).

Third, I wore my continuous glucose monitor.  I try not to rely on it too much, and I really did not have to because of my careful carb counting plan.  It was a bit of relief to have it though, just in case.  I never ever want to be upwards of 300, which DOES happen, but I just hate the feeling and the repercussions of it.  Plus, in case I get over zealous with the insulin, I don’t want to drop too low either.

Turns out it was a lucky day for me.  Somehow I was able to guess my carbs fairly close to what I ate, and only had to look up the pumpkin pie on CalorieKing.com via my BlackBerry (two things I am very thankful for).  Mom gives me heck for always being on my BB.  Little does she realize I am not screwing around on it, but usually looking up carb counts (insert rollyeyes icon here).  After we finished dinner/dessert I was still famished.  Don’t know what has been going on recently but I just can’t quench my hunger.  I’ve been feeling like a hippo, the pink one, in that hungry hungry hippo game I played as a kid (which mom hated because it made too much noise, lol).  Anyway, I tried my hardest to resist snacking for three hours.  At two hours, I tested and was high (but less than 300) so I waited because I still had a lot of insulin still kicking in my system.  At the three hour mark I was still a bit high so I made a correction (my pump figured out how much insulin I still had “active” in my system, SOOOO thankful for my insulin pump) and had a snack of two roast beef sandwiches (yes, we did not have enough food for fourths).  (thankful for more food!!)

I was quite nervous going into the day knowing it was going to be a tough one diabetes-wise.  But with a little planning and a little luck everything turned out ok.