So, I got my A1c to a 6.9 this month and feel good about that, but at the same time...

My insurance won't cover a Revel, I have a 2500.00 DME cap. So I have been fighting this for months...and could have been on one for the past month if not for this issue.

My cotton wool spots have increased a lot. I have gone to two eye doctors who sympathise but can't do anything about them. So I have to just accept these I guess.

Anytime I get a high, they seem to happen, which is much more frequent then they used to be...once in a month or so.

My stress levels have gone up.

I have taken about 20 blood sugars a day and cut out carbs, cofee, drinking beer and anything else that might add to high blood sugars...yet it takes me 50% of my day to really maintain myself.

I have had T1 for 33 years and I am not bad off, by any means but its hard to put so much work in to this and not see much payoff. Its affecting my day to day, my significant other, and my stress level.

I have to ask myself if I was better off with how I did things before, and A1c of 8 and less fluctuations from trying to keep the average lower. I think I need to be on pump again and a cgm, but it seems insurance does not see that to be the case,

I am walking on a razor edge it seem to just get by. Any high or low and my eyes suffer damage...minor damage in the grande scheme , but not something I want at 37. Moderate NPDR is enough for me thanks.

Sorry just burnt out I guess.

Views: 134

Comment by Brunetta on January 30, 2012 at 3:09am

Can you get your doctor to wrtie a letter challenging the insurance..that a pump mis a medical necessity for somoene with type 1and lingering complications? Call MM and they may be able to supply letters that can be used to demonstrate medical necessity. Can you coNTACT HIGHER-UPS or supervisors at thre insurance comoany? Do not deal with the phone-answerers.they have
no power in that regard. Tu diabetes memebers who work in insurance or have experienced Josh's situation, please chime in.

It is so hardto do all thre work you have had to do to
stay ontrol and come uo with a much better a1c, but do not see those results manifesting in reduced comolications yet. It has to be frustrating.Can yiu eat more protein snacks to stabilize you sugars. I have snacks of cheesesticks or 1/2 can of tuna throughout the day( You can get the little
packs of tuna when out and about). That seems to work for me when I was on MDI, and I will do it now on the pump, too.

In Prayer for you Josh,

God bless,

Comment by acidrock23 on January 30, 2012 at 4:52am

I agree with Brunetta's suggestion to call Minimed. It's totally in their interest to help their salespeople you and I think there's ways they can work around this sort of financial barrier in these sort of situations? I have found that insurers have what I perceive to be barriers to care at intitial contact levels but if your situation gets "escalated" they often fold. I have had sort of a wierd situation w/ test strips as they sent a letter suggesting 4/ day was ok so I was ready to unlimber the Big Bertha 9 degree and go hit golf balls through their window. The doc wrote a letter stating I need 17, presumably based on the data and her concern about some of my hobbies which, of coure, would be riskier without enough test strips, and the insurer provided 14/ day. No EOB, no phone call, they just cut 3/ day. Probably not worth the slight risk of hitting golf balls through their windows but still puzzling. It's worked out ok although I am always close by the end of the month. Like now, I called the order in 2 weeks ago and it's still not here? Lisinopril ran out yesterday. Fortunately, it's a big builiding if hypertensive shifts throw off my aim...

Comment by Jacob's mom on January 30, 2012 at 5:09am

Hi Josh, my husband works for a large company and they also had a cap on their durable medical supplies, when jacob wanted to switch to the omnipod i was very disheartened by this. i made a few phone calls and then contacted the head of HR at his company, and sent a heart felt email about my sons condition and how the pump would help him, i explained everything i knew about billing ect. well another woman from HR reached out to me and said this is not what they wanted for their employees and they probably didnt even realize that their policy could impact us in this way. they waved the durable medical cap for the entire company and it has been smooth sailing ever since, there is still kindness out there if you seek it out, give it a try and use me as an example if you would like, good luck and keep up the good fight. the other day i was frustrated with jacobs diabetes we both felt it, i feel like it is controlling us sometimes and i just took a deep breath and said we have a life outside of diabetes, lets remember that and not let it control us so much, it eased his burden slightly i felt it lift. best wishes amy

Comment by Josh F on February 1, 2012 at 1:54pm

Thanks everyone. Still fighting the good fight but got 7 cotton wool spots in my eyes this week. No idea why. Things feel very dark right now. My A1c is 6.9 but my mood is a 2 at best. I will keep people updated.

Comment by Josh F on February 2, 2012 at 7:05am

Oh and yes apparently I only need 150 test strips a month according to my insurance because apparently they know me well enough to prescribe that. Awesome. I do 15 a day but am happy with the 300 a month I used to get and I would pay the rest...another stupid battle to not lose my eyesight. Do they not see the point of preventative care?

Comment by Brunetta on February 3, 2012 at 4:49am

Hi Josh. Jacob's mom suggestion too contact the HR about the plan your employer has purchased sounds as if it may have potential. I would write them a letter, have your opthamologist write a letter confirming that the eye problems are
diabetes related, and even set up an appointment to see the head of HR.. Maybe they do not put a personal face on what such types of restrictions are doing to their employees. It is worth a try, if you have not already done so..

Insurances, the general public, and some medical personnel, too; consider an indulin pump a lifestyle "convenience" rather than a necessity. You may be able to convince them other wise..
They need to see a face and a person, a hard-working professional.,among their thousands of emoloyees. They need to view and hear from A forthright, caring employee who works hard and is negatively impacted by thieir decision to purchase a plan with such a low DME cap.

God Bless,
You are in my prayers

Comment by Jacob's mom on February 3, 2012 at 4:58am

i agree with brunetta, like I said sometimes people do have a heart and want to step outside the box to help, sorry about thinking your A1c was lower than what you said, it is still good however, good luck with your efforts! amy

Comment by Josh F on February 12, 2012 at 6:38pm

Well no one in Hr wanted to really do anything so i am just getting the CGM, but to be honest it is a blessing in a way...I used to be on a pump and hated the spikes I used to get from bad connections or kinks in the tube or even infections I used to get quite easily from the insertion site. With insulin pens and a cgm, I should be able to maintain my lower A1c and within a couple years the eyes should stablize. I hope...

Comment by Jacob's mom on February 13, 2012 at 6:04am

hi josh, you may be on to something, sometimes if it isnt really broken why fix it, my sons A1C was better on shots than the pump d/t pump issues, however for him being so self concious about his diabetes going into his high school years i feel a pump may be "cooler" and easier for him to deal with while trying to be independent, i never thought pumping could be so complex it is such a misnomer in the non D community that a pump is the end all be all/ artficial pancreas turn it on and forget it! i am more anxious worrying about pod failures than when he was on MDI, that being said the ease of insulin delivery helps, in any case i'm ramblng, i just want you to feel supported and heard josh, have a good week! amy

Comment by Josh F on February 13, 2012 at 7:05am

Thanks Amy. I was happy to get my A1c to a 6.2 last night, and hope this helps long term. I really have been getting a lot of cotton wool spots in my eyes..9 of them, which is the result of the bring down from 8.2-6.2 in 6 months. But it is a price I am willing to pay I guess short term to save the eyes in the long run. My Drs all think I will be able to do so as I have not reached that "point of no return" ;-) Fingers crossed. I finally got to start seeing a therapist at Joslin and am getting on anti anxiety meds to cut the edge, as I was told straight up I am the most anxiety ridden T1 they have seen in a while. I think this was to stress the fact I needed to be on something as i was resistant. So far I am on a very low dose and it seems to work somewhat, as I don't seem to be having panic attacks. ;-) Slowly but surely.


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