Could use some help

Type 1 and LADA
1

Hi,

So I've posted on here a while back and got some amazing advice on things to do to help, several of which I've been working on to help things.

I guess with this post I wanted to ask what everyone has done when dealing with others around them who don't have diabetes and who don't understand, or did understand but are feeling weary at having to deal with someone who has it.

I've had several lows, too many, lately, and my place of employment asked that I go see a doctor and get a note saying that I'm still fit to do my responsibilities. I did that.

This morning, there was a misunderstanding and I thought I left a message with my boss that I'd be out sick. He didn't get it, though, because he got a new phone.

He came to my house check on me because they're never sure if I've gone low again, or if I've had another episode.

It's pretty embarrassing because I feel like I'm at fault for putting them in this spot.

Then yesterday, my roommate, who's moving out, said the landlord wanted to talk to me and said there have been several complaints by my neighbors that the ambulance has been here several times recently and they didn't like that..or something....

He wants to talk to me and apparently doesn't want me renting here anymore.

I feel like all this stuff is crumbling around me and my diabetes has a lot to do with it.

How have you handled dealing with people during your trying times? I kind of just want to ball up into a corner and not come out ever again.

I just made an appointment to see the diabetes educator again...I missed the last 2 appointments, once because I went low and woke up late, the other because I couldn't find the building.

I need help, but I'm afraid it might be too late and that people are losing patience in me.

Thanks!

2

I wanted to respo0nd straight away, and will come back with more ideas (I hope). First, I've seen your posts, but can you tell us how long you've had D? What is your insulin regimen and are you MDI, pumping etc. Can you get a CGM? I have the Dexcom4 and it really has made a difference. I can take a quick peek, see what it says my BG is, and see what the trend arrows are doing. I then test based on that info and can take action.

One thing that may help in terms of the job thing. Do you have someone (or a telephone answering service can do this) who can call at a certain time in the morning? It is important that you ask them to call, then wait 20 minutes and call again - in case you're in the shower and can't get to the phone. (That happened once where my husband who worked nights, would call me at 5:30 am. I didn't answer, he panicked and called 911. There I am in the shower and the fire crew is in my bathroom. It was made worse because I worked for the fire dept - no one likes their co-workers to see them naked). Anyway, if you have a call and then call again set up, you won't have to deal with your boss having to come to your house cuz they don't know if you're low.

With your CDE, review your ratios (carb and correction). It may be that you have getting too much insulin, and there may be reason to tweak things.

I'll stew on this and see if there are other things I can come up with.

3

I've been diabetic about 15, 16 years now.

I might be taking too much insulin. It's been hitting me harder this past year more than it ever has for some reason. Like, I've had lows before but never this many.

It's getting old and I'm kind of fed up with it, but I want to fix things and get better. I'm not trying to test everyone's patience even if I am. That's the frustrating thing, I suppose.

Thanks for responding, though, I like your ideas! :-)

4

I would make sure that you keep the appointment with the diabetes educator. As Artwoman said, it sounds like you need to review your insulin regimen & carb to insulin ratios. The educator should be able to work with you on a plan. Make sure you take all your records (BG results, insulin doses & food intake) with you so you can get as much as you can out of the appointment.

5

I like the phone call idea thing. And I'd recommend a CGM if it's at all possible for you.

I don't think it's legal for your landlord to kick you out because of a health condition (and yes, the ambulance thing is a health condition). Be polite but firm--explain that it isn't okay to kick you out because you haven't been well. As long as you're paying your rent and not destroying the property or disturbing your neighbors with loud music, there's no reason to ask you to leave. You aren't doing it on purpose and it sounds as if your building's other residents are incredibly insensitive...

It isn't your fault for putting everyone in this position--their reactions are their own and it isn't as if you told them to. I do, however, think it's nice that your boss cares so much, even if it's annoying.

It is important for you to get your BG back under control (I'm sure you know this, but I want you to be safe). Maybe you should cut back on your Lantus dose by a unit and see what happens? Also, if you have hypo unawareness, running a little higher for a few weeks should bring your sensitivity right back.

6

And as someone retired from a fire dept/EMS if the runs are in the middle of the night, we don't use sirens etc if there is no traffic - it isn't that much noise needlessly generated. And you can assure your neighbors that it is proof that they are in an area that has a short response time - someday they may need it.

Regarding the phone service, I had met a woman with type 1 who lived alone when I was first Dx'd. She had one of those phone answering services call her. Often a wake up service is one of the things they can provide. You can get someone (hopefully either a neighbor or a good friend who lives nearby) with a key. If they phone calls (1 -3) don't reach you, they can access you in your home, without calling 911.One of the things that can happen - and it is unfortunate - you can be "branded" a "frequent flyer" even though the calls are legit.

You will have the responsibility to call the phone service when you are up and perhaps up early cuz you are leaving early. That way they don't call and since you aren't home, they don't reach you and things start rolling with calling your friend etc.

Another idea, I don't know if your residence has a window in the door or in front, but another friend whose mother had a medical need would turn a sign in her window that said good night - when she went to bed and "good morning" when she got up. It gave the neighbor across the hall the heads up that she was fine and having her morning coffee. A simple low tech idea. If the neighbor didn't see the "good morning" sign she would go over.

Hopefully you've been keeping detailed logs so that you and your CDE can see trends, and make the appropriate adjustments. If you are on MDI and taking your basal insulin in one dose, maybe splitting it - not exactly 50/50 but a smaller second dose in the evening if you are going low during the night. Again, your CDE can help.

ANother idea. If your insurance balks at covering CGM, get the info interms of any costs they cover for the 911 runs, You may be able to show them that it is less out of their pocket to cover the CGM than to cover the 911 runs. Money (especially "their" money) talks

7

I really like what a lot of people have said already. The answering service, getting a CGM, etc. A CGM can definitely help tell you when you're about to go low, and then you can hopefully correct it before you need to get an ambulance! It sounds to me like you need less insulin for some reason. Even if you can't get ahold of your doctor, go ahead and change your lantus dose/basal rate to be a bit lower. Being high for a little bit is way better than having a dangerous low.

Your landlord absolutely CANNOT kick you out of your apartment or not rent to you because of a medical condition. It would be the same if you had a heart condition or cancer and had to take an ambulance, and I doubt they would say anything to you for those things. I would try to find a tenants' rights document for your area because I can almost guarantee that's illegal. Don't let them pressure you into leaving! If you like where you live, they cannot kick you out because of a medical condition.

Also, with your employer, I'm not sure it's legal for them to request that document from your doctor. They don't have the right to know about your medical condition or anything related to it. I can understand why you would tell them if you were having issues with lows, but I find it odd for them to request that your doctor say you can still do your job.

8

Hi Jake,
Just throwing in my 2 cents worth. I think we all agree your landlord cannot legally refuse to rent to you and your boss while showing concern is not legally allowed to make you get a note from your doctor.
I think the thing that is missing here is personal responsibility. "stuff is crumbling around me and my diabetes has a lot to do with it." The object word is "my" you have to take ownership of it. It is your D and only you can control it. The second you let it control you, you might just as well crawl into a ball in the corner.
So you've already made 2 appointments with an educator that you missed - the one because you couldn't find the building just doesn't work. With GPS on phones and google earth and google maps there is no reason you can't pinpoint the building - especially if you go online ahead of time and map it out carefully. I hope that you make it to this third appointment and bring every piece of data with you. There are a bunch of good phone apps available free of charge to help with record keeping. Log everything - blood sugars, food, insulin, exercise because the CDE is only as good as the information she or he has available. But even then it's still your responsibility to take the advice and use it.

9

Thanks Clare,

I needed to hear that. It is my responsibility. There's times I don't like having diabetes, and times I try to act like I don't have it. That doesn't cut it.

I don't want it to define me, I'm a whole person, not just a diabetic, but I have to recognize that it's a big part of living.

It's the hand I was dealt, so I need to fully accept it. Some days I don't think I do.
I've got a few books I've ordered and I plan on reading about controlling your BS and I have made another appointment to see the educator. Id like to get a CGM if possible.

I've never been very good at recording my blood sugars. That's something simple that I can fix, though, and I even have an app on my phone that keeps track of it.

I appreciate the input and thanks everyone again for the recommendations. I like the phone call idea and the landlord is giving me some leeway, so that's good. I explained my situation and I think more than anything he wanted to hear from me and talk it out. I hope it works out. :-)

10

Hey Jake, I think if you polled the entire 30,000 plus member community there is not one person here who actually likes having D. I'm glad you are taking the steps to own it. It took me almost 36 years to do that and I am very lucky to have come out virtually unscathed. My Dexcom G4 CGM is the single best piece of technology I have ever used to help me unravel the mysteries of my blood sugars. 288 times a day it records day and night 24/7. It also helps with the record keeping since the results are all downloadable and the reports are eye opening. Maybe you could check with your endo, insurance company, CDE and see what steps you need to take to at least get the ball rolling. Insurance companies are just now beginning to realize the Dexcom pays for itself several times over with just one ambulance ride to the emergency room.

11

You may have to keep a detailed handwritten (or supply a downloaded one) to your insurance company as proof that 1) you need the CGM and 2) you are able to make the best use of it. Granted it shouldn't be up to them as to whether or not you get it covered, but it is their money.

One way I own my D is that I never, ever use the word "diabetic" as a noun. It is an adjective.

12

Hi Jake, Great ideas everyone has. I wonder if you can get a diabetic alert dog? That way you would have help for your lows if adjusting your insulin doesn't help enough. I also would take less insulin at night for sure, and have a snack like cheese and nuts before you go to sleep. I almost always do that now. Maybe a pump would work better for you also since you can adjust your basal rates for when you tend to go low. And yes use your phone to keep records of everything. My phone is a valuable tool to keep me on track and aware of everything I do, how much insulin I took, when I took it, what I eat, when to eat and so on. I use the ibg star meter so everything goes directly into my phone up when I test and it gives me graphs and statistics also. I agree that your landlord doesn't have the right to kick you out and I'm glad he is listening and talking to you. I think you could pursue that legally if he tries to. I think a cgm would be a good idea to try also.