Petition re Continuous Blood Glucose Monitors

[Spiker]

. Each time someone signs the ppl I'm petitioning get an email with the name of the person followed by a simple sentence asking to add the CGM to the program. Change.org does generate a list with names and city/postal code/country info but that's for me to download and, if needed, deliver to the petitioned parties in hard form. For now I would like to flood them with emails and see.

Which is exactly why emails from Change.Org, Avaaz, etc are often treated as spam and blocked...

 

[Spiker]

@azure no, I'm not on a pump. I'm so incredibly terrified of them. Just thinking/talking about one makes me feel nauseous and like I'm going to pass out. I know that everyone says they're wonderful and my head nurse has been trying to get me on one for over 10 years now, but I JUST CAN'T!

So you can get a pump paid for on OHIP (or whatever it's called now) but you don't want one and that's why you want a CGM?

There is a lot of support for the idea of making CGM more widely available to T1s, but I am not sure this is a very good example to be honest.

All that a CGM is going to do is alarm during the night so you can take glucose. So it's going to give you bad sleep and yoyo blood sugars. It's not going to solve the problem. A pump would solve the problem. A CGM won't.

Also I don't believe that basal insulin can't be adjusted to prevent night hypos. Worst case, you run higher sugars at night. Much better than seizures. Again, a CGM *won't* solve this problem.

 

[Spiker]

@azure no, I'm not on a pump. I'm so incredibly terrified of them. Just thinking/talking about one makes me feel nauseous and like I'm going to pass out.

[...]
I JUST CAN'T!

Many people when first diagnosed with T1 are terrified of needles and get nauseous at the thought. Been there myself. But guess what, it's inject or die. We've all faced that, at some level, and all come through it. So what's it going to be in your case?

 

[Pauldjacob58]

@bernasia if you look at the new NICE guidelines I think you will find that you qualify for CGM

Your health care provider should be able to negotiate with your health insurance company to cover the CGM. I had one covered about 8 years ago. It should be easier today

 

[Juicyj]

I'm with Spiker on the pump - i'd rather have a continuous supply of quick acting being streamed into my system to regulate my blood glucose than being connected to a beeping machine, but that's given the choice. Ok here's a completely alternative suggestion.. how about a dog that's trained to smell when your BG starts to drop, I know in some countries this is possible, would you be receptive to this ?

Otherwise I would go for the pump if it's available, there must be a way to work through your anxieties regarding this.

 

[Pauldjacob58]

So you can get a pump paid for on OHIP (or whatever it's called now) but you don't want one and that's why you want a CGM?

There is a lot of support for the idea of making CGM more widely available to T1s, but I am not sure this is a very good example to be honest.

All that a CGM is going to do is alarm during the night so you can take glucose. So it's going to give you bad sleep and yoyo blood sugars. It's not going to solve the problem. A pump would solve the problem. A CGM won't.

Also I don't believe that basal insulin can't be adjusted to prevent night hypos. Worst case, you run higher sugars at night. Much better than seizures. Again, a CGM *won't* solve this problem.

 

[bernasia]

Are you afraid it'll malfunction? That was my fear before I got one, but it was the only option for me to stop the hypos.

Once I'd had one shown and explained to me, I was A LOT happier. My first pump was 11 years ago and even then it had two microchips that constantly checked each other and that everything was ok.

I'd never give my pump back! It changed my life - literally.

I suggest you speak to people who have pumps, see some pumps, research online, etc. A pump could well be the answer you're looking for and is definitely worth exploring in my opinion. I felt a huge amount of freedom when I got mine, and coukd finally sleep properly at night.

I never even considered it malfunctioning. I'm simply terrified of having some machine attached to me like a robot pumping me with meds nonstop. I have spoken to many pump users and everyone says what you say - it changed their life and is wonderful. I have yet to hear anything negative. I have seen lots of different pumps and have even taken a prototype home, however I still can't get over my fear!!

 

[Spiker]

Your health care provider should be able to negotiate with your health insurance company to cover the CGM. I had one covered about 8 years ago. It should be easier today

She has a public health care provider/insurer, the government of Ontario, and she is lobbying that health care provider (via the petition) to change its policy and provide CGM, which it currently doesn't.

 

[Spiker]

I'm simply terrified of having some machine attached to me like a robot

What, just like a CGM?

You know that the sensor is embedded under your skin all the time and you have to carry the receiver on your person 24x7 right?

 

[bernasia]

I'm with Spiker on the pump - i'd rather have a continuous supply of quick acting being streamed into my system to regulate my blood glucose than being connected to a beeping machine, but that's given the choice. Ok here's a completely alternative suggestion.. how about a dog that's trained to smell when your BG starts to drop, I know in some countries this is possible, would you be receptive to this ?

Otherwise I would go for the pump if it's available, there must be a way to work through your anxieties regarding this.

I would definitely but where I'm currently living, pets are not allowed. Maybe when I move I will look into this further, although I know that they too are crazy expensive and highly doubt that the costs would be covered. But, like I said, I will look into it probably around this time next year after I move.

 

[Spiker]

I would definitely but where I'm currently living, pets are not allowed.

I am sure that a medically required assistance animal will be legally exempt from your landlord's restrictions.

Maybe when I move I will look into this further, although I know that they too are crazy expensive and highly doubt that the costs would be covered. But, like I said, I will look into it probably around this time next year after I move.

You have life threatening night time hypo seizures but you can wait a year to look into a possible immediate solution to your problem?

Sorry, this whole thing isn't adding up for me.

 

[Pauldjacob58]

Your asking for help yet if an insulin pump terrifies and makes you nauseous, your best bet is overcoming the fear of the device that's going to reduce the lows, stabilize your control and maybe save your life. When I started with my first pump 20 years ago, I had it in my mind that I wasn't going to stay on it for even a week but then something hit me and I stopped with the childish attitude and realized this was going to improve the quality of my life and it absolutely did. 47 years as type 1 and at least 20 on a pump so I can speak from experience and success. My suggestion to Bernasia is to grow up, lose the attitude and realize the pump will be your best friend and your depriving and only hurting yourself. When the day happens that your on a pump, you will undoubtly regret your past behavior and never be without a pump. Every pump manufacturer has a 24 hour support line plus you would probably receive a week of training at your health care providers office. If a pump makes you nauceous, then let it happen so you can get over it but if the real issue is being connected to a small device with controls and insulin being delivered 24-7 based on your specific needs, then you need to get over it now and either accept the hardships your facing with the disease or decide your going to be under control. It's proven that a pump will mean less hypoglycemia's

 

[CarbsRok]

Sounds to me as if you have your priorities wrong. Yes a CGM will alert you to the lows if and only if it catches them in time but it doesn't cure your problem IE a basal pattern that doesn't match your basal insulin. So your first port of call is sort that out by having a pump. There is no difference to wearing a pump than a stand alone CGM, except you can fine tune your pump by the hour to deliver the insulin you need.

 

[azure]

I know that illogical fears can still really get to you and don't just go away, but if you think about it you've probably walked past people in the street wearing an insulin pump and didn't even notice. They were just normal people going about their business.

The pump secretes minuscule amounts of insulin every few minutes in a similar way to a non-diabetic pancreas. You don't feel or hear it doing this and the only effect you notice is good blood sugars.

I appreciate you're afraid, but surely your fear of something bad happening at night must be stronger? A pump could hopefully sort out a lot of your issues. Don't discount it because of fear. Think of all the children who wear one. Believe me, when pump users say they're fab, they mean it!

 

[Spiker]

They will start you off by just pumping tiny amounts of harmless saline solution (instead of insulin) so why not give that a try?

 

[bernasia]

So you can get a pump paid for on OHIP (or whatever it's called now) but you don't want one and that's why you want a CGM?

There is a lot of support for the idea of making CGM more widely available to T1s, but I am not sure this is a very good example to be honest.

All that a CGM is going to do is alarm during the night so you can take glucose. So it's going to give you bad sleep and yoyo blood sugars. It's not going to solve the problem. A pump would solve the problem. A CGM won't.

Also I don't believe that basal insulin can't be adjusted to prevent night hypos. Worst case, you run higher sugars at night. Much better than seizures. Again, a CGM *won't* solve this problem.

It's not that I don't WANT one, I'm really terrified of it. Please don't be jumping on me re this. I know my fears are irrational, but I can't control them. Yes I know a lot of newly diagnosed T1s have tons of fears and I did too. Before being diagnosed I literally fainted at the SIGHT of a needle. If I ever get over this fear, I will get a pump for sure because it would help me, not JUST with the seizures. In the meantime, my only other option seems to be a CGM and the alarm on it is exactly what I want/need. It will not give me bad sleep as I don't get seizures every night. They're very random and the alarm would wake me up before a seizure occurs. As with yoyo blood sugars, I have them anyways. A CGM won't enhance that. Yes, I get that a pump would help with that, but again, I'm really really scared.

 

[Spiker]

There is no guarantee a CGM will even wake you up. I have slept through my CGM alarms or just dismissed them half-asleep without looking and gone back to sleep.

 

[bernasia]

What, just like a CGM?

You know that the sensor is embedded under your skin all the time and you have to carry the receiver on your person 24x7 right?

Yes I do know. But the sensor is MUCH smaller than the pump that is attached into your skin, it's also much lighter and therefore you can't feel it as much. Plus it does not pump you with meds. Carrying a receiver in my purse or having it rest on my nighttable is not a prob.

 

[bernasia]

I am sure that a medically required assistance animal will be legally exempt from your landlord's restrictions.

You have life threatening night time hypo seizures but you can wait a year to look into a possible immediate solution to your problem?

Sorry, this whole thing isn't adding up for me.

Again, you're attacking me! You don't know my personal situation and this isn't fair. My landlord's restrictions aren't a legality. I'm renting a basement if you must know and the owner of the house does not want animals. I'm trying to purchase a house and then will look into a dog.

All I asked for is support with my petition. I appreciate everyone's suggestions because, who knows, maybe there's something out there that I haven't yet considered. However, I do NOT appreciate your attacks.

 

[Spiker]

On any given night that a CGM works to avert a hypo, you will instead have bad sleep and worse yoyo blood sugars.

Confront and overcome your fears, as you did successfully with needles, that's your best bet. A pump will actually solve these problems rather than just mitigating them from very bad to not so bad.

Or -
Have you looked into where the variability in blood sugars is coming from? Have you tried an LCHF diet to stabilise your blood sugars? Have you tried a split basal or a different basal? Are you eating late? Are you eating pizza or pasta late?