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.

Yes it is a pain in the rear lugging around my ’90’s drug dealer style pager of an insulin pump, but it has been so worth every bit of frustration.  Even my friends tease that I could thread the tubing through some chain for an added effect. (nice, lol)  I wish I had some pics of my pump but they are stuck on my old computer stuck in storage right now, and who knows where my camera is.  I have been using a Minimed 522 pump since June and have only recently started using my continuous glucose monitor.  I was able to lower my BG with out the CGM.  Although recently the CGM has become VERY handy since I am not so much in control of my food intake.

I do have to say that the tubing that runs from my “pager” to my belly is a pain in the arse.  I get tangled in it, it never seems long enough, and my puppy’s legs get tangled in it.  I was hesitant in getting one of the tubeless style pumps but they seemed so big and obtrusive.  I haven’t tried one of those, but if I was in the market for a new pump I would look a little closer at them.

Medtronic who makes my Minimed pump has been a spectacular company to work with.  They provided me with excellent training, both via the computer and also in person.  Rumor has it they will be coming out with a tubeless pump next year and possibly for a small-ish fee I can trade mine in.  But it is just a rumor for now… (fingers crossed).

Target values from the American Diabetes Association (ADA)/American Association of Clinical Endocrinologists (AACE)

Fasting/before-meal glucose: 90 mg/dL to 130 mg/dL (5.0 mmol/L to 7.2 mmol/L) (ADA);
<110 mg/dL (6.1 mmol/L) (AACE)

2-hour after-meal glucose: <180 mg/dL (<10 mmol/L) (ADA); <140 mg/dL (AACE) (<7.7 mmol/L) (AACE)

A1C: ?7.0%(ADA);?6.5%

The chart below provides the ADA recommendations for glucose levels in children. This year the A1C recommendation for adolescents and young adults has been lowered from 8.0 last year to 7.5

Glucose goals vary by age group because children have a higher rate of “hypoglycemia unawareness” than adults.

Benefits of Improved Diabetes Control

• Reduced risk of high or low blood sugar levels (hyperglycemia/hypoglycamia)
• Improved sense of well-being
• Lower risk of complications

Having near-normal blood glucose reduces your long-term risk of:

• Retinal eye disease by 76%
• Nerve disease by 60%
• Kidney disease by 56%
• Heart disease by 42%

I have no idea except to call a lawyer about this one. How on earth can they approve the device, agree it is medically necessary, but yet turn around and say ‘no, we don’t feel like paying for it’. How can they get away with this?!

Just had to rant. Any advice would be greatly appreciated. If you know of anyone who has been through something similar can you send them my way? I am at a complete loss what to do. Was that fight that stressed me out, made me sick, just for the amusement of some darned medical director at the insurance company?!

I’m going to go get my hair done… hopefully that will make me feel a little better. arg.

This letter is going to an “independent” medical reviewer (probably yet another M.D. with a specialty in endocrinology, not a CFRD specialist as I ask for) and will also be read by a medical director at my insurance company who will make the final decision of whether or not they will assist me financially with the purchase of an insulin pump and continuous glucose monitor.

I put on my white doctor lab coat when I wrote this, so I am sorry if there is confusion. I tease that I think most CFers deserve a honorary medical degree by the age of 30 with all the medical stuff we go through!

Here’s the letter… (or click the link below)

To Whom It May Concern:

Due to the rarity of my health issues, my appeal should be reviewed by a specialist in Cystic Fibrosis Related Diabetes.

As my Endocrinologist has described, I have Cystic Fibrosis Related Diabetes (CFRD). This is a rare type of diabetes affecting a small, but growing population of Cystic Fibrosis patients. CFRD is unique and needs to be treated as such. It is also very challenging as it requires a treatment that is tailored to my specific needs. My nutritional intake and activity levels vary greatly on a day-to-day basis due to the effects of Cystic Fibrosis, therefore treatment of CFRD must be flexible. When my health is considered in its entirety, it is obvious the addition of an insulin pump and CGMS would be the best, most-cost effective option. Better treatment of CFRD will result in better health, less complications, both diabetic and with Cystic Fibrosis, resulting in fewer hospitalizations, less IV antibiotic treatments and such, and in turn save Great-West Healthcare money in the long run. These effects need to be considered in the decision of financial coverage of the devices. Please understand that growing up with Cystic Fibrosis has given me a medical education that most patients do not receive.

My nutritional needs require a high calorie diet due to my inability to digest food properly. CF causes thick, sticky secretions in the pancreas which block digestive enzymes. I must eat almost continuously to keep up with my body’s needs for nutrients. Despite this, I am underweight and have always struggled to maintain my persistently too-low weight. Over my lifetime I have found gaining weight is almost impossible. This affects my over all heath, as it is well known that the weight affects lung function in CF patients. Changing my eating habits is not an option.

Often, the complications of CF have an affect my appetite on a meal-to-meal basis. This makes it even more important for me to eat as much and as often as possible. When I am well, I usually eat three large meals a day and continuously snack in-between to meet my caloric intake goals. Because I eat so frequently it is sometimes hard for me to tell which direction my blood glucose levels are going since the insulin bolus’ overlap. Checking my levels with a standard point-in-time glucose meter does not show the trend-lines I need to know to treat myself properly.

When I sit down to eat a large meal, 2-4 times a day, I can never judge how much I am going to eat. I eat as much as physically possible, usually not finishing everything on my extra-large plate. I have attempted to take insulin after I eat, having counted the total amount of carbs I took in, but the delay does not work for my body. As well, I have attempted splitting my dose, taking half a dose before a meal and one more shot after to complete the dose for the accounted carbs, but this has proven to not work for my body. For all the reasons stated above, my use of an insulin pump, which would allow several to many smaller boluses while eating, and a continuous glucose monitoring system, to provide trend-lines, is the most logical choice of treatment.

Recently I was hospitalized for a Cystic Fibrosis exacerbation, which unfortunately is very common for CF patients. During my one-week stay, my blood glucose levels were inexplicably out of control. Even with the help of the nursing staff and doctors, we were unable to find the cause of my extremely variable levels. A continuous monitor would have greatly helped my ability to gain control, alerting me of times when I would start to go too high (reaching well over 400mg/dL), or when I would drop low after too much insulin was delivered to correct the high. After my hospitalization, I continued IV antibiotics at home, and added Prednisone to my regimen for one week. I attempted to keep the best control I could, but without the assistance of a CGMS and the flexibility of a pump, I was not able to maintain my goal BG levels.

During and since this hospitalization, I have been on many new medications for my CF. No longer am I able to feel the signs when I start to become hypoglycemic. My educated guess is that this is due to one of my new medications. I live alone and am very afraid I may have a severe hypoglycemic episode while by myself. Yet, I must aggressively manage my CFRD to avoid complications. A CGMS would help me be more comfortable with lower, healthier, blood sugars and would allow me to gain and maintain better control of my levels.

An added difficulty for patients with CFRD is sluggish insulin. Due to the thick secretions in the pancreas, insulin is not able to move into the system in a timely manner. This can cause lower BG levels than expected after a bolus; also another logical reason a CGMS is a necessary tool, to alert me of these lows. The ability to quickly disconnect from insulin when this event happens is another reason a pump would work better than my current treatment of using shots. There are other issues that sluggish insulin causes that affects BG control, but I am just learning about this myself.

The more tools I have in managing my BG levels, the better my health in general will be, and the less of a financial burden I will be on my health insurance. I have suffered from dehydration many times since I was diagnosed with CFRD due to my body trying to flush the excess sugar out of my body. Dehydration causes the already plentiful amounts of thick, sticky mucus, to become even more like cement in my lungs, causing a perfect breeding ground for bacteria. I have a copious amount of mucus plugs in my lungs, which is common for someone with CF, but I also believe that the amount of plugs I have is increased due to dehydration. It is well known that patients with CFRD have decreased lung function, as compared to the already decreased function of a “normal” Cystic. I would appreciate your help in assisting me to take better control of my diabetes, by giving me the tools necessary to help me, in every way, to take better control of my blood glucose levels, to prevent further destruction to my lungs and the rest of my body’s organs, which is in my interest as well as in Great-West Healthcare’s interest.

Sleep is ever so important for CF patients when both healthy and ill. This may be a less major point, but it adds to the overall reasons that a pump and continuous monitor could assist in improving and maintaining my control. When I am ill, my need for long term insulin is even more important. While I am sleeping I can not give myself a shot of Lantus, there for I must interrupt my much needed sleep to give myself a shot. If I had a pump, I would not need to do this, which would help my body recover faster from illness, possibly even preventing illness and preventing the worsening of my Cystic Fibrosis.

I am not expecting to replace my point-in-time meter with a CGMS, I understand that both are necessary and very valuable tools that can only help me gain better control and maintain that control. I would appreciate the ability to take the best care of myself to prevent unnecessary illness because of all that affects my body with two chronic diseases.

With all the complications of diabetes, as well as the complications from Cystic Fibrosis, and all of the unknown complications diabetes can cause on CF. I think it is in the best interest of my health, and the best financial interest of Great-West Healthcare to provide myself coverage of both an insulin pump and CGMS.

I appreciate your consideration of my unusual case. Please contact my doctor or myself with any questions you have.

Sincerely,

me!

My doctor said we are finally ready to pursue my final appeal of insurance coverage for an insulin pump and continuous glucose monitor. It took a while to find and compile research studies since simply there are so few (we even had to wait for one to complete!). CF related diabetes is very rare, considering the size of the general population and it is also a fairly newly discovered complication of CF only since us cystics are living so much longer now days. I have figured there are only approximately 4,000 people in the US with CF related Diabetes. Finding info on it, none the less, hard data and research studies is very complicated.

Regardless of this, my insurance companay doesn’t care that I need to take up to 8-9 insulin shots a day, if I were to follow my prescribed nutritional needs. That is on a rough day. At a minimum I take 5 shots a day. Most diabetics with Type 1 diabetes take about 3-4 shots a day, minimum. My nutritional needs are much different than someone with Type 1, which makes things even harder to balance. My insurance company is not allowing coverage for an insulin pump because I do not have Type 1 diabetes…. now does this sound fair to you?!

I sent in my paperwork the other day, and my doc is sending in her stuff soon. Please wish good thoughts and send positive vibes for me and my future pump. Hopefully this time the reviewers will actually listen to my doctor and to common sense!