Wow! this was my first day using the site, and I am overwhelmed by the support. I am going to talk to my husband about the CGM, then contact the Insurance Co. to see what I need to do to get some coverage. About 6 years ago I had tried looking into a device like this that was new, my husbands doctor gave me a hard time about writing a letter, since that was what the insurance company wanted. After finally getting the letter from the doctor, we were denied coverage, and the product was taken off the market. My husbands dr. is another issue. He encourags me to not talk to his doctor about this problem. For some reason, he will only tell his doctor so much, like “I have been have night time lows.”. In all the years he has been seeing this doctor, he never offered us Glugagon. I found out the it was on the market myself and covered by my insurance, and asked my husband to request a prescription. It has been challenging for the 22 of our 23 years of marriage to get him out of shock with the tube stuff, that would make him gag, throw up, and feel sick once I finally got him out of it. We have had the glucagon for the last year, and things are easier. But the unpredictable lows are not curred by this, and my daughters have been through a lot. I have a 19 yr old and 14 yr old. They have been through many occurrances, while we would be stopping for a hamburger, while he was driving on a few family vacations, at my daughters plays. Recently he went t pick up my daughter from a friends house at 11:00pm and and get a call that they are lost. This was my worst panick. Trying to find them, when they were only a mile away it turns out, but my daughter didn’t know where they were, and the police wouldn’t help me because I didn’t have a location. I never knew he was low when he left the house, neither did he… I did finally find them, with some clues my daughter gave me. Thank God for cell phones, and thank God she was able to get him to pull the car over while they waited for me to find them. But while they waited, he cursed and carried on in front of the friend they were also driving home, who never knew he was a diabetic until now. So, I think you are right, the only solution for us is to get a monitor that will alert him.
If he isn’t going to get on board with getting it, it is likely going to be challenging to get one? Many, if not most, people with daibetes can sit around telling “war stories” like those but Insurance companies usually require specific “criteria” from people before they are going to agree to shell out the $$ for a CGM. The sensors are several hundred dollars/ month, depending on which model you’d choose, and also require, at least the MM one, to have a giant needle shot into your abdomen a few times/ month. If MrPatty is cranky about this stuff, he is probably going to run into challenges getting one arranged.
It sounds like a very challenging situation for you though. It may be better to get MrPatty to sign up for TuD and perhaps get some help fixing what some of the problems are with a goal of achieving more stability.
I agree, Levemir, Lantus … can all be unpredictable. Your comment about letting blood sugars run for a bit higher for a few weeks is what I have been doing. I would say I have a bit better control and awareness of hypos, or at least when I am running lower. When first diagnosed I would feel hypo at 7 - probably because it had been so high for the first 10 years (which is how long it took them to diagnose me!!!) When I went on the insulins you mention, I was hypoing 6 - 8 times a day. Then someone told me that Pork Insulin was still available (contrary to what doctors and nurses have been saying). It took me a long while to actually get it but once I had it was better! Unfortunately the awareness did not come back immediately.
I would suggest that your husband is not allowed to go out for a drive until he checks his blood sugar levels and they are preferably a bit higher than the target and stop every hour or so to check again and deal with what is happening, having a candy bar or something if it is on the way down, even if he has not reached hypo level.
I agree. This all has to start with a long conversation with your husband about how this affects you and your family. To convince him that it is his duty to try to work towards getting a CGM. As acidrock said, insurance companies have specific criteria and the doctor has to write a letter that addresses those criteria. Hypounawareness, when properly documented, is usually one of them. Some insurance companies are still resistant to CGM coverage, but many are becoming much more friendly to them. The current CGM is much more reliable than the previous generation of glucowatch, et al.
It’s going to be very difficult to have this conversation without making him defensive, but it’s important that your voice is heard in this. Yes, you’ll get the ‘you don’t have to live with x, y, z’ but that doesn’t negate the pain that this issue is causing you. While it’s true that he can’t necessarily resolve the hypounawareness so easily, he can become more proactive by being more forthcoming with his doctor, requesting a CGM, and even listening a little bit closer to you when you perceive early signs.
I feel for both you and your husband on this. It’s important that both of you get the help and support that you need. I wish you the best of luck!
The endo he goes to will know that with unpredictable lows the insurance company will pay. Dexcom is the one to contact; What I’m saying is don’t go to the insurance company first off. Go to Dexcom. They already know what the insurance companies’ policies are. They know how to frame the words. The endo gives a prescription and Dexcom takes it from there.
OK, you are very helpful. Thanks.
I agree with going through the manufacturer but I still think that Mr. Patty would have to be on board?
BCBS required some silly BS that, to some degree, I could have just manufactured. I didn’t bother b/c it’s easier to just right the numbers down from my meter but well, it’s not like I don’t have other meters, missing stuff, overlooked carbs, etc. My logs were such an unintelligible mess, I don’t think anyone, even me, could have figured anything out from them, little arrows scribbled all over the place, messy scrawls, etc. but the doc copied it and they bought it.
If you don’t provide a reasonably complete picture of some sort that they can use, even the manufacturers won’t necessarily be able to ram the sucker through? i totally object b/c nobody at any insurance company does squat with any of this crap but they basically use it as torture or a filter. No log= no goodies. If they’d used logs constructively or maybe for research or something like that perhaps I’d be more on board but it gets tossed into a box or, more likely, scanned into some imaged documents and they don’t actually do anything constructive with it.
Hi Patty -
I am a mom of a T1. I also recommend the Dexcom, you will be very pleased with it. Looks like maybe? you were trying to get the glucowatch approved a few years back - the Dexcom has a much better reputation and they will be around for the long haul - much better technology. Also, if it were me, I wouldn’t ask my doc at all, I would call Dexcom and start the process - they will try to get a sig from your doctor, then leave your doc a message saying “we’ve decided to get the Dexcom, since my husband is hypounaware and I’ve given him ___ many glucagon shots…Dex will be contacting you shortly” If endo refuses it might be worth switching docs (yes, the Dex is that good!).
Good luck!
I appreciate your advise. I will contact dexcom. But my biggest challenge is getting Bob (my husband) to agree to share the real problem with his doctor. His doctor thinks he only gets nighttime lows, in wihich we had probably 1000 times over the last 23 years that have we have been married. The unpredicable days time lows have mostly been in the last 10 years. But he wont tell his doctor. Until last year year i had to treat him with and eyedropper at a time of sugar water, which could take 45 minutes to come out of it, because the taste of the tube stuff he would spit out, an ultimately throw up, which is dangerous when you are unconcious. A year ago, he mentioned the night time problem to his doctor, as if it was brand new, and we finally had glucagon prescribed. What a relief. But me and my daughters are frightened over the unpredicated daytime lows. I told my daughter that if it meant me wearing the Dexcom, to prove that it is not such a big deal, I will do that. I am not looking for perfection, just want to keep my family safe. My daughters need their dad. I always fear that he would fall and hit his head. I don’t know why he don’t see things from our view.
Well I just asked my husband if he could sit with me and read all of the responses I received regarding people with unpredictable lows. As I expected, he refused, got very angry, yelled, and walked away from me making me feel sad and helpless again. He said he refuses to wear “a box attached” to him. He said “I test myself 100 times a day, that’s all I can do”. The testing still doesn’t stop the unpredicatable lows when we are sitting at long term sport events or my daughters plays, or taking long trips in the car to my daughters college. If I ask him to test himself he gets angry, it has to be his descision only. I don’t know what else I can do. Part of me, wants to end our marriage, but since I know his mood swings and selfishness is a result of him having this desease, I stay committed…as they say “in sickness and in health”. He said “this is my life, and I am not going to live your life”. Also know that I am not a nag. I know him so well, and always know when he is low
Do you have any kids under 18? Tell him that he is not allowed to drive with them in the car because he is a danger to them. There have been fatal accidents with people going low while driving. I understand that he is not necessarily causing the lows, but there is something out there that can help him if he wants the help.
You also need to do what is best for you and your kids. I am sure he would have a hard time forgiving himself if someone happened to one of the kids if he went low while driving.
Driving is a major concern. Discussions of this topic end up in loud arguments. I will never ask him to pick up the kids and or run erronds, but he doesnt notice that I am avoiding him driving. And just always volunteer to do it. But it is hard when we go from Long Island to Oneonta, and of course he assumes that he is the driver all the time. All I do is stare at him and watch how he is driving the entire 4 hours. On the return 4 hour trip, he will usually ask me to drive. But there have been times that I have asked him to pull over and check himself, and he gets angry. But the anger is part of his sugar lowering. Once he has the sugar, then we go our merry way again. But the scars of all of these arguments are not good. Glad to have people to share this with.
Patty, your husband sounds depressed and defeated… He probably doies not want to admit ,it neither to his doc nor to any one else, that he has a problem with management of his diabetes, that he has close to deadly lows freqeuntly. He may even that he feel that what he had to do when he was first diagnosed is enough: I am type one for 43 years and I used to feel that way. I wanted to avoid anything that was a constant unending reminder of diabetes, becuase I was unsure and fearful and did not wan tothers to know I had diabeets. I felt that showing that you have such an illness was a form of weakness… Well he has aged, diabetes regimens have changed ( I was reistant to a pump for years, as I was diagnosed back in the the one-shot a day way back in 1967; and I wanted to keep it simple, not knowing anything about diabetes control roroutines and tratment paradigmse ( no glucometers then) I wanted to keep the diabetes regiman that I had used for almost 30 years; …
Now I am so glad to have a pump and CGMS., and I am NOT hypounaware… I just want to know about my sugars… Can yoiu get BOb to talk to other MEN online about diabetes? Is there a Men’s group like on Dlife, here at Tudiabetes.? Many times men will feel more comfortable hearing that other men have had problems and that admitting that you do control everything all the time is not the worst thing, nor a blow to their sense of masculinity or power.
Patty I know you Love Bob, but think about yourself and your kids. i would not ride with him if you can avoid it, but if you have but one car, and with the price of gas today, taking two to one desitnation is NOT a good idea…
Hope and Pray he gets it together emotionally…That seems to be the overwhelming issue here, diabetes burn-out, anger and depression
God Bless,
Brunetta
When you describe how you sit tensely in the car and watch your husband for four hours, Patty, I really get the feeling of what you are going through. And it is not good. Have you ever heard of Alanon? It is a group for people whose loved one is an alcoholic. It teaches them that their life has turned into taking care of their loved one who won’t take care of themself, and that they need to learn to stop caretaking and to start protecting and caring for themself and their children. I hope you won’t be offended if I say that is what you need to do as well. I strongly encourage you to get into counseling and have somewhere you can talk about what are going through and how much pain you are in. You need help and support right now and that is something you do have control over. Knowing your husband’s condition is caused by a disease, doesn’t make it any better or excuse him not getting help for that condition and getting mad at you for trying to do this.
I agree with Brunetta & Zoe, you need to take care of you. I understand you wanting to be there for him, but at the same time, he doesn’t want to do anything to help the problem. If there was nothing he could do about it, then that would be different. Both pumps & CGMSs have really come down in size.
My Dexcom transmitter that is on my body is about 1 1/2 inches long, 1/2 inch wide and 1/4 inch tall. It is not that big and no one would notice it. I was very anti-pump before I got a CGMS because I did not want something attached to me 24/7. But I realized I had a problem and I did not want to end up dying because of a bad low or killing someone else. One morning I passed out after putting eggs on the stove - fortunately, I passed out before turning the stove on. I live alone but live in an apartment so if I had started a fire, I would have hurt other people. That is not something I wanted to do.
You know you can always come here if you need to vent - we really do understand where you are coming from!
I originally came to this sight to find other people like me, that are dealing with a spouse that has unexpected lows. I didn’t realize how much support I would get from people who are the diabetic in the relationship. I find these discussions helpful because all of you have have a lot in common with my husband, Type 1 for many years,and experiencing unexpected lows. But you all have gone to the next step to find a better way. I know it is not easy, but I am sure the special people in your lives appreciate it. I appreciate all of you. Thanks
Kelly, would you mind telling me who found you, or how you got help
Yes, the people on here are a special bunch, Patty who are like a 19,000 member extended family. When I’ve had problems I couldn’t figure out, I’ve posted on here even at 2AM and somebody had been through the same situation and posted a response in a matter of moments!
I also think we’re special in that we are on here because we are committed to finding the best ways to manage our diabetes. I’m a relative newbie, I was an adult onset LADA/Type 1, so I’ve only been dealing with it for 4 years. But there are people on here who have been living with type 1 for decades, some of whom admittedly didn’t always manage their diabetes well. Perhaps if you post a new thread you can find what turned some of them around. I also believe there is a group for partners of diabetics? If you click on the Groups tab you can find it. You might be able to connect with other partners and get some support from them in particular. Here is one: http://www.tudiabetes.org/group/marriedwithdiabetes And here is another: http://www.tudiabetes.org/group/SpousesAndSignificantOthersOfDiabetics
I don’t mind telling you Patty. All but one time, I woke up on my own. Based on things that I remembered happening before passing out & a couple times or I had actually managed to test my BS, it seemed like the average I was out was about 3 hours. Besides the eggs incident, I once came to sitting on my couch. There was blood all over my shirt and later I ended up with a black eye – I apparently either walked into something or fell. That actually happened when I was trying to get a CGMS and my doctor’s nurse was playing games with the paperwork. I made an appointment to go see my doctor so she could see my eye and why it was important for me to have a CGMS.
About 2 weeks after I started the pump last summer, I had 2 bad lows – those were the only 2 times I have passed out with the Dexcom. The first one was my fault because a bunch of us where I live ordered pizza late Friday night. My Dexcom woke me up and I took a correction not thinking I had a different basal rate at night with the pump. I started going low about 5:30 but did not hear the alarms. I later woke up on the floor. I couldn’t move and I was having trouble even screaming. I thought I had a stroke. My feet were near the nightstand where the phone was and it took me awhile to get turned around. When I first started trying to move, I could not even get turned on my side. When I finally got down to the nightstand, my first attempt at getting the phone failed. I don’t know how long it was before I got there, but I know that 20 minutes when by between attempts. It was also after 10 by then – I was supposed to be somewhere at 10 and was actually worried because I was late. When I made my 2nd attempt at the phone, I pulled the cord out of the wall.
I knew I needed help so I got over to the windows. I have no idea how, but I got one of the windows opened & just started screaming for help. Someone heard me and came up the hill to see what was going on. They called 911 & went & got the manager to get in. My doctor said it was lack of glucose to my brain is why I thought I had a stroke,.
Two days later, about 3 in the morning, I was apparently screaming and pounding on the wall. My neighbors heard me and decided to call 911 – they weren’t sure what to do. By the time a cop came, I had stopped and of course did not answer when he knocked on the door. He was actually going to leave & gave my neighbors his card to call if it started up again. They convinced him to get the manager to come in. I was lying on the floor unconscious when they came in. I woke up to EMTs over me. They kept saying, “Kelly are you still with us” and I did not answer right away because I did not know who they were. At one point, I did see my bedskirt & realized I was in my bedroom but I was still afraid to say anything. When I heard one EMT say something about my BS, I realized why they were there. My first question to them was how they got in.
Those 2 were last July and I have not passed out since then. The Dex really has been a lifesaver for me.
Thank you for sharing. I am hoping I can have Bob read your story someday.