Sick of being sick.. and trying to avoid self-pity!


(KaraG) #1

I was diagnosed almost eleven years ago, and have been through lots of (figurative) highs and lows with this disease. Financially, it’s always been a struggle. My husband and I recently moved across the country for his work; now that we are here our insurance has changed and I’m still trying to iron out all of the kinks that come with that. The new insurance won’t cover Novolog or Lantus (which I’ve been using for years), so I’ve been transitioning to a Levemir pen. It’s supposed to be “interchangeable” but I have woken up in the high 400’s every day since starting the Levemir. My bedtime levels are usually not much higher than 80. I also haven’t been able to get a half-unit dosing pen of fast acting insulin, so that has been a challenge when it comes time to correct for my high fasting sugars.

In short, I’m feeling very frustrated. I’ve never been able to try an insulin pump due to insurance and financial limitations. What I’m doing obviously isn’t working, in addition to the high blood sugars I eventually bottom out sometime in the afternoon or evening. I’ve been dealing with pretty significant hypoglycemia unawareness for the last few years so that’s especially inconvenient (I’ll often get down to the twenties or thirties without realizing that I need to test). I briefly had a CGM but can’t use it with the new insurance unless I pay out of pocket.

I’ve just started a new job this week as well. That’s always a challenge, trying to navigate the waters of educating coworkers without causing conflict is difficult. I need the people around me to understand that it’s a legitimate health concern, not a ploy for attention or extra breaks. I also get nervous about revealing too much to my employer, as I don’t want to seem like a liability or an unreliable employee. Too many times in the past I have had coworkers and/or employers assume that I just don’t take care of myself. Two nights ago I got up to use the restroom and was so out of it that I walked straight into my bedroom doorframe and skinned my forehead. I tested, took corrective for the 473 reading, and went back to bed in tears. How do you explain to someone why you have a gash across the top of your face? At my age (26) it would seem like I had been drunk or otherwise irresponsible- not sick.

The last concern I’ll mention here is for my family. I have a one year old daughter, and every day that I wake up high I also wake up emotional. It kills me to be short-tempered with her or be interacting poorly because I’m not able to get a handle on my glucose levels. My husband has also been dealing with my emotional upheaval, we’ve only been married for two years so we’re still learning how to communicate effectively. I feel like when my blood sugars are consistently bad, he’s less concerned than he would otherwise be. After hearing that I’ve woken up above 400 for enough days in a row, I think it just starts to sound normal to him. He’ll chuckle and say things like, “oh, you’ve set a new personal record!” I sometimes use humor to cope with it myself, so this shouldn’t upset me the way that it does. He also gets upset with me when he feels like I’m being sarcastic or sour while discussing my blood sugars, which I tend to do at times like this when I feel like I’m at the end of my rope.

Any advice? I know that this is nothing compared to the struggles others go through, and I always feel guilty when I realize that I’ve spent too long in self-pity mode. It’s not helpful to sit around and lament the struggles of dealing with a chronic disease, but for the life of me the adjustments I’m making to my diabetes care routine don’t seem to be helping either. Normally I would use exercise as my emotional outlet, but due to childcare restraints now that I’ve started this job that hasn’t been an option.

If anybody has some helpful hints about how to convince insurance companies to pay for a CGM and pump, that would be GREATLY appreciated as well.


(joe) #2

@KaraG hi KaraG

if it’s just the levemir, why wouldn’t you go see a endo and try something new… as in maybe splitting a single shot into 2 half shots. 24 hour insulin isn’t 24 hours for everybody - you may be one of the lucky ones.

you said they won’t cover novolog… so what are you using for fast acting?

you can make MDI work, heck you can make anything work with effort.

your problem isn’t “nothing” if it’s bothering you. I would test more, add a bolus shot at 3 AM if necessary, figure out the best levemir plan and keep moving forward. if you don’t have it you can get a book called “Think Like a Pancreas” it’s really very good for the science behind t1d.

insurance companies are supposed to deny stuff. if you want something bad enough you will appeal and get lawyers (or threaten to :wink:) if necessary.

good luck


(Dennis J. Dacey, PwD) #3

Hi Kara @KaraG ,
I can certainly feel for you, relate to your feelings, physical and emotional, because I’ve been there. And yes, struggles and guilt feelings you are experiencing are worse than those that every one else is experiencing because they are what you are now feeling and experiencing.

If we “talk” some more and I get to know you and what a day is like for you I may be able to offer you some tips based upon my 60 years experience living with diabetes; things that you may share are your meals including times, your usual activities, timing of your current insulin shots and when you check your BG. Then one step at a time. If you can answer the questions / suggestions made by @joe, that is a good starting point.

There are several options for insulin; I switched to Humalog 21 years ago when it first arrived on the scene, 10 years later because of insurance I had to change to Novolog and then again because of insurance I had to return to Humalog. MDI can be very effectively utilized with insulin such as Humulin R and Humulin N; I began MDI in the 1970’s by using pork/beef insulin NPH and Regular. I survived the financial strain by using a single syringe and needle over and over for days and weeks; and as @Joe says, you can make anything work. I suspect that your husband may be “communicating” with you in a loving way by not dictating to you as to how you manage diabetes - he is giving you freedom to learn and manage; the woman to whom I’ve been married for over 50 years gives me that “freedom” although she does occasionally offer her astute observations.


(Nancy) #4

Hi @karag. I get your frustration. I recommend you persue an insulin pump with your insurance again. A letter from your doctor should be enough ammunition to file your appeal. The manufacturers should also have a program to assist you, either getting DME benefit through your insurer (the pump and supplies are NOT covered by your pharmacy benefit, although the insulin is) or getting you devices and supplies at a hardship discount.

With regards to your family and co workers, #1 piece of advice is to not let their ignorance intimidate you. Your employer cannot take action because you are diabetic. There are EEOC laws that protect you.
In the meanwhile, until you can regulate yourself on the levimir + short acting your insurance will cover, let them know you need a cgms and describe the serious swings you are suffering. You can also tel the insurance co you cannot control your glucose with the drugs they want you to use. You should be able to switch back and pay the next level co-pay on the formulary for the insulin you are used to.
My last piece of advice: don’t let anyone convince you that you can’t get it your way. I remember being 26. Its hard just starting out. But stay focused, discuss your fears and frustrations with your husband, he is your #1 ally; stand up to your family (i love you guys, but if you can’t take my dietary needs into consideration, I can’t visit for meals), and just tell your co-workers how to treat hypoglycemia and the what signs to look for (they’ll appreciate knowing what to do and you’ll feel better knowing someone has your back).
Good luck dear.


(Lisa) #5

Hi, sister, I understand how you feel. When my kids were little I had ambulances at my house so often that the paramedics knew me by name and I would drop off cookies at the Chicago fire department every time they saved my life from bottoming out. Then I would rebound high and just want to sleep. My kids are 18 and 22 now, and I think that they prefer when my blood sugar is high because then they don’t worry. I’ve tried to make them understand that high is bad, but it falls upon deaf ears. Anyway, I want to encourage you to fight the insurance company. Ask to speak to a manager and explain that you NEED certain things. You should not have to change a medication that works because of insurance. I also appreciate how difficult it is to have to work with TID. It’s very difficult with little ones. I want you to know that you’re not alone. Hugs!


(KaraG) #6

Joe,

Thanks for your quick reply! I’m waiting to see an endo in late January; until then it’s just me (I have a family doctor, but as per usual the family doctor is less educated about type 1 than anyone living with it). Even more thanks for your suggestion to split the dose. I had tried that with Lantus about ten years ago and hadn’t thought to try it again. I’ve implemented that change and it has certainly helped.

I’m on my last pen of Novolog now, and will be transitioning to Humalog when that runs out. I’ll certainly check out the book you’ve suggested, and I’ll keep the threat of litigation in my back pocket.


(KaraG) #7

Dennis,

Thanks for getting back to me. My schedule is up in the air at the moment as I transition into this new job. My sleep schedule has gone out the window (not helpful for blood sugar control, of course), and my meal schedule is quite variable as well. I try to stay very low carb at breakfast; if I’m high then I’ll typically fast until I’m within range. Otherwise, breakfast would usually consist of an egg and a piece of wheat toast sometime around 10. Lunchtime is usually around 2 or 3, I’ll have either a salad or fruit and cottage cheese. Dinner is almost always late (9ish)… I’m vegetarian so I’m careful about consuming enough protein but it’s almost always high fiber. I’d say a typical dinner would be a lentil and vegetable curry, with another cooked vegetable alongside and maybe 1/2 cup of cooked rice.

I’ve taken Joe’s advice and split the Levemir dose, I’m taking it at 10 am (8 units) and 10 pm (8 units). My Novolog ratio is 1 unit:15 grams carbs. I test when I wake up (8), before breakfast at 10, before lunch, dinner, and bedtime… and any time in between when I feel off. Constant testing!

I also appreciate you sharing about how you got through the financial strain. I’ve been worse off than I am now in terms of being able to afford meds and supplies, I can relate to reusing syringes long past the point of dullness… in the past I had found that I was able to get new syringes by going to the syringe exchange program offered by my county. The program was intended for IV drug users, but it was a one-for-one exchange (dirty syringes for clean ones) and the syringes they were giving out happened to be insulin syringes. Chronic illness and the related struggles certainly build character.

Finally, thanks for reminding me that my husband is trying to help in the best way that he can. The change in perspective is just what I needed.