Overall Update

The diabetes diagnosis irritated me in early March, but I had my two days of denial, then got on board and have been doing well. Since I cannot exercise (Congenital Myasthenic Syndrome & possible Mitochondrial Myopathy) I've had to use diet to manage the diabetes (plus medication). I have begun to learn which foods work well and which make my sugar go up. I've also learned how to "budget" my food so that on special occasions, I CAN indulge a little and not have it affect my sugar. My daughter's 21st birthday was Friday and I did have a drink with her AND a tiny piece of birthday cake. But I had planned for it and eaten very sensibly all day and it didn't cause any serious issues.

And I'm very happy to report that as of today, I have lost almost 35 pounds since March 10. I have a LONG way to go, but it's definitely steps (leaps??) in the right direction. Only sad part of this is right before this, I replaced all my clothes and now they don't fit right! But it's all good.

Things on the Trilogy have been a status quo. I gave up on AVAPS-AE and use regular AVAPS, but I also refrain from back sleeping most of the time. I finally solved my humidifier problem and use it in passover mode. It's cooler (the hot air drives me nuts in the summer) and I don't get the excess moisture in my mask. I don't get enough moisture for my liking, but you can't have everything.

My RT is coming today for my regular visit, plus my Trilogy is due for maintenance so she'll take it and give me a backup unit. That should be fun, getting it all set up.

I have been off oxygen for several months now and did my first overnight pulse ox last night (preparing for RT's visit). For some reason, my desktop computer won't acknowledge the device, but I finally got it hooked up to my netbook computer. I can say without a doubt that my oxygen line is NOT what my doctor wants, but there was only one dip below 90. I stayed between 95-100 80% of the night and 90 - 95 the other 20%, so that's good. My doctor prefers a line that doesn't jump as much, but all things considered, I'm good with this report.

I downloaded the Trilogy reports as well. It looks like many nights my average IPAP is up to 19, but aside from that, nothing looks like it has changed much. The things my first doctor wanted to watch are still in line with her directives (Minute Ventilation above 5 & Vte above 400). PTB goes up and down, but stays above 90% so that's good.

I still wake up a LOT, but I'm fortunate that I can go back to sleep easily most of the time. I've found my sleeping "sweet spot" if you will and I do my best if I go to sleep around 11pm and get up around 8am. Can't always do that, but it's what I strive for. I've had a rough few days (family crap) and was EXHAUSTED last night and went to sleep at 9:30. When 8am came, I wanted to stay in bed and felt I could have slept for hours more. But I got up and aside from being slightly tired, feel pretty good.

So, there you have it from my world using the Trilogy.

Oh that's great - and congrats on the wt loss!

Do you have to check your blood every day?

Be careful about being overtired - it can affect things... but I think you're terrific for making the changes you've had to and not complaining - I know I wouldn't be able to do it so well!

Keep us posted, and maybe one day with wt. loss, etc., you won't have to be on a stringent regime.

Julie wrote:Do you have to check your blood every day?

Yes. My doctor wants me checking once daily at random times. However, I FINALLY convinced his office and the pharmacy that it would be good to have supplies to be able to test MORE if need be. That's how I've been able to determine that some foods are okay and some should be totally off limits.

I allow myself ONE trip to Dairy Queen a month. I get a SNACK sized blizzard and ONLY on a day that I haven't already indulged in something that might raise my sugar. As a family, we used to go to Dairy Queen in the summer several times a month, but obviously ice cream isn't something a diabetic should eat a lot. I figure once a month gives me that treat (so I'm not totally deprived) and going to the smaller, snack size, helps. It still has between 55 & 65 carbs (way too many) but life isn't worth living if you can't have this stuff on occasion (like a drink a a sliver of birthday cake). I also bought small ice cream cups from Schwans and ONE cup (again, on occasion) doesn't have an excessive number of carbs so I can have one of those in the evenings - on occasion.

This has not been easy. I miss my cinnamon rolls for breakfast (we have an Amish store that sells the BEST cinnamon rolls -- OMG) but I have cut them out completely. I miss my ice cream at night (a lot of nights in the past) but I know it's just not on my diet. I miss potatoes, rice (oh, I miss rice) and noodles -- I eat them, but only a very small serving. I've stocked my pantry with diabetic friendly snacks and got rid of all the regular, sugary treats (my son took them back to his Army base).

But when I see that I've lost close to 35 pounds in just over 3 months, it makes me determined to stick to the diet.

You're amazing!

One thing I've done is switch from higher cal. etc. chips to Quacker Mini (brown rice)Chips (Cheddar), and discovered that they're really quite low in all the bad stuff incl'g carbs (that part's relative tho'), so if you haven't looked at them, maybe do that... tho' I'm not trying to sabotage you! Just think how great you're going to look (tho' I'm sure you already do ) with weight off, and maybe getting around will be easier... fingers crossed.

Julie wrote:You're amazing!

One thing I've done is switch from higher cal. etc. chips to Quacker Mini (brown rice)Chips (Cheddar), and discovered that they're really quite low in all the bad stuff incl'g carbs (that part's relative tho'), so if you haven't looked at them, maybe do that... tho' I'm not trying to sabotage you! Just think how great you're going to look (tho' I'm sure you already do ) with weight off, and maybe getting around will be easier... fingers crossed.

Thank you, Julie. I might look at those chips and give them a try. I'm open to trying anything that will satisfy hunger/snacking that isn't high in carbs.

One of the things I have to keep in mind is that even though I feel a little better, I still have this damned neuromuscular disease and I've come close to falling victim to it, thinking I was okay. I noticed this morning when getting up from my rollator after brushing my teeth -- my legs just just gave out. Luckily, I've learned to hold on so no harm, no foul, but I have to remember that I'm still very disabled and not get overconfident.

Madalot wrote:

Julie wrote:Do you have to check your blood every day?

Yes. My doctor wants me checking once daily at random times. However, I FINALLY convinced his office and the pharmacy that it would be good to have supplies to be able to test MORE if need be. That's how I've been able to determine that some foods are okay and some should be totally off limits.

I allow myself ONE trip to Dairy Queen a month. I get a SNACK sized blizzard and ONLY on a day that I haven't already indulged in something that might raise my sugar. As a family, we used to go to Dairy Queen in the summer several times a month, but obviously ice cream isn't something a diabetic should eat a lot. I figure once a month gives me that treat (so I'm not totally deprived) and going to the smaller, snack size, helps. It still has between 55 & 65 carbs (way too many) but life isn't worth living if you can't have this stuff on occasion (like a drink a a sliver of birthday cake). I also bought small ice cream cups from Schwans and ONE cup (again, on occasion) doesn't have an excessive number of carbs so I can have one of those in the evenings - on occasion.

This has not been easy. I miss my cinnamon rolls for breakfast (we have an Amish store that sells the BEST cinnamon rolls -- OMG) but I have cut them out completely. I miss my ice cream at night (a lot of nights in the past) but I know it's just not on my diet. I miss potatoes, rice (oh, I miss rice) and noodles -- I eat them, but only a very small serving. I've stocked my pantry with diabetic friendly snacks and got rid of all the regular, sugary treats (my son took them back to his Army base).

But when I see that I've lost close to 35 pounds in just over 3 months, it makes me determined to stick to the diet.

Not sure if Breyer's ice cream brand is sold in your grocery stores but 1/2 cup is only 4 carbs. It's the "low carb" one. Sugar free kinds tend to have way more carbs. Popsicles make a sugar free kind that are low though. 2 grams per popsicle. They come in tropical flavors and also classics. If you like Blizzards you might try this. Get a plain or vanilla protein powder that has less than 2 carbs per scoop. In a blender, add 1 cup sugar free almond milk, 1/2 scoop protein powder, 3 strawberries and a few ice cubes. Blend till smooth and enjoy. It get's thick like a blizzard or shake. I seldom eat more than 20 carbs a day.

Madalot wrote:...However, I FINALLY convinced his office and the pharmacy that it would be good to have supplies to be able to test MORE if need be. That's how I've been able to determine that some foods are okay and some should be totally off limits....

I had the same experience in that I wanted to test up to ten times a day: once at wake up, one hour before a meal, then one and two hours after a meal. It helped me learn how different foods affected my glucose levels. Five years later I don't test nearly as much. I keep my HbA1c around 6.0 with diet and Metformin.
I use you as a good example of someone taking responsibility for their own healthcare. Earl

A couple of comments,

I have been struggling with not enough humidity and finally have a solution. I daisy chain a HC150 with my PR regular humidifier and get almost double the water used each night. Because I like warmer air, I Added a Hybernite hose system. Since you prefer cooler air, have you thought of doing something similar with your 2 HC150 chambers. If you have the heated one first and the temp set to fairly low, perhaps 1 on the HC150 scale, most of the heat will be dispersed by going through the second tank and you may get a higher level of humidity and stiil keep the air cool.

Second, since the HC chambers are listed as disposable, does your DME give you replacements? Can you get a "replacement" connector hose and use that to connect the two chambers?

I am glad you are getting a handle on the diabetes aspect. Congratulations on the weight loss.

A favorite snack we enjoy is dehydrated zucchini strips.

Slice a zucchini sideways.
brush on some olive oil,
dust with very little garlic and onion powder,
dehydrate until crisp.

If you enjoy a little heat you can add some red pepper flakes.

While managing diabetes is no fun, I'm glad that it's drudgery has had the side effect of weight loss for you. With your neuro muscular struggles, I'm thinking the less weight to have to haul around the better. I too appreciate your overall positive perspective on all this. I am encouraged to do better about taking care of myself. Thanks for the update.

Congratulations on the weight loss. That is impressive.

It might also help on the other side - meaning if you have less weight to haul around you might feel less tired and challenged. It means that your legs have 35 lbs less to lift when you stand up. Just try and pick up a 10 lb bag and imagine you were carrying 3 times that around all day.

For snacking you might look at jerky and nuts both provide protein without the carbs and sugar.

Many thanks for the good wishes and support. I also appreciate the food suggestions. One of the booklets the doctor gave warned that many sugar free foods actually have more carbs than their full-sugar counterparts. I try to watch for it. Ice cream was their example and that if you're going to indulge, you're better off eating a small portion of regular than bingeing on sugar free.

I also researched online and found a diabetes website that listed tons of snacks based on the carbs per serving. I went through it and selected several lower carbs snacks, that I like, and bought them and have them handy.

JDS74 -- I can get plenty of humidity with my current humidifier. My problem is I get rainout and that damned whistling noise through the vent on the mask when I have it turned up enough. I've decided that I'm okay with what I'm doing now -- passover mode. But I do appreciate the input!!!

My RT came yesterday and switched out the Trilogy. She and I were talking and after seeing that my Trilogy has 14,000+ blower hours, she said she would try to find a newer one and put it aside for me so that *I* could have a newer one. She said they were ordering a few new ones and would try to grab one if she could. She likes me, plus I am one of her most distant patients and I think she figures if I have a newer machine, the likelihood of her having to come out in the middle of the night because of a malfunction is reduced. I asked if they had any Trilogy 200's and she said no. I then told her that it was my understanding that the Trilogy is "old news" (based on something Morbius said) and she asked what was newer/better and I couldn't remember!!! But it's kind of sad that my DME & RT aren't up on the newest technology. Sad, but not surprising. But I like this RT a LOT and she's super supportive of me and what I do so I'm not complaining.

Congrats, Maddie! Sounds like you're doing great and have adapted well to a big change in your diet.

Keep on keepin' on. It's inspiring.