I need to vent

Mental and Emotional Wellness
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I need to vent here for a moment. I’m not looking for advice or for people to tell me what to do about these issues I’m struggling with. I just need someone who understands to hear me.

I am 26 years old and I have had Type 1 diabetes for 23 years. Back in February of this year, my birthday came around and I turned too old to stay on my parents health insurance, which I had used my entire life. I thought, at the time, that the best course of action was to switch to the health insurance that my employer provided, because hey they paid for it, right? Well, here’s the thing. I HATE this new company. They have fought me every single step of the way and at times even outright refused to fill my prescriptions for insulin. I have to get “prior authorization” for every medication I try to get filled, even if I have filled it through them before. It can take up to two weeks for this prior authorization to go through and in the mean time, I am up sh*t creek without a paddle. Thankfully, my roommate is also Type 1 diabetic. She’s on an insulin pump, but her doctor makes her have long acting insulin on hand as a back up. She lets me use her surplus insulin when I can’t get any more because my insurance company is screwing me. Not only do they refuse to fill my prescriptions at times, but the copays are ridiculous. $200 for a one month supply of insulin. Per script. That’s almost $400 a month for me in JUST INSULIN. Not to mention the test strips, lancets, insulin pen needles, and CGM supplies that I need. Now this company is auditing me to make sure that I don’t still have coverage with the company I had before this one. When I got that letter, I threw it against the wall. I was thinking, “Seriously, you refuse to fill my prescriptions and NOW YOU ARE AUDITING ME?!?!” I am so fed up with this company.

Now, because this stupid company is refusing to fill my prescriptions, even though I have jumped through every friggen hoop they have put in front of me, I have been forced to use a different type of insulin than I was using. Cue massive spikes and dips in blood sugar levels. Cue waking up with numbers in the 300’s. Cue crashing before meals so then I rebound and end up high. Cue stress and vomiting because of the crazy blood sugars. Cue missing work because I spent the morning hugging the toilet. Cue leaving work early because I can’t see past the low blood sugar headache I’ve had all afternoon. My endo and I are working together on getting me through this, but there’s only so much she can do. I’ve had her call my insurance company many times, she’s helped me come up with a plan for keeping my numbers as good as possible in the mean time. Really, she’s wonderfully helpful, which I find to be a rare thing in an endocrinologist.

This is the first time in my young life that I have had to deal with such adversity in simply trying to take care of myself. That’s all I really want. I just want to be healthy. Why is it so hard to try to achieve that simple goal, just because I am diabetic and I live in this craphole economy that thinks people who can’t afford healthcare should suffer because they brought it upon themselves?

Right after my birthday this year, and switching to this crap new health insurance, I left a long term relationship that had been one of the major parts of my support network. Suddenly I was faced with financially supporting myself ENTIRELY by myself. All my medical bills, rent, utilities, car insurance, gas, food… everything. So not only was I reeling from the end of this relationship, but then I had to figure out how to adult all by myself. I get overwhelmed really easily anyway and this all just feels like too much. I live in Georgia and my family lives in Arizona. I don’t really have anyone I can reach out to for help at the moment, so now I’m trying to expand my social circle, too.

On top of all that, last year I found out that I have diabetic retinopathy in both eyes. I went to an eye specialist for treatment. That was THE WORST day. This doctor was too impatient with me to see that I was having a panic attack in his office, so instead of helping me to calm down and rationally work through all the fear and crazy feelings I was experiencing, he just pushed me back in the chair, clamped my eye open, gave me an injection INTO MY EYEBALL and then left. I still can’t think about it without having a panic attack. Now, I have to go back to another eye specialist this week to discuss further treatment. I’m kind of freaking out. And I can’t afford these treatments, either… so there’s that.

Life is stressful enough as it is, but then you throw in a chronic illness, a sh*tty health insurance company, and diabetes complications, I just want to hide in my room and watch Netflix in my pajamas. But I don’t. I get up, go to work, fight through the haze of high blood sugar and feeling like I’m going to vomit, treat the lows as they come, and repeat my mantra, “This, too, shall pass.” I just feel like I spend my whole life waiting for things to pass. Waiting for the sick feeling to go away. Waiting for my blood sugar to come down so I might actually be able to eat on my lunch break (as I’m doing right now). It never gets any easier. I just get better at dealing with the crap.

Thanks for listening. (err… reading)
Alex

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I am sorry to hear you are facing such adversity in your life right now. It is difficult managing one’s diabetes on a good day let alone during high stress. I find when I am under added stress my blood sugars tend to run higher.

I can’t believe that your insurance company is being that difficult… insulin is required for us diabetics to live! And as you’ve said… diabetes is expensive!!!

I, too, struggled a bit when I was no longer a student and off of my parents’ drug plan… I felt lost and panicked. As a new graduate at the time, I didn’t have a job lined up… and definitely not a job that came with health benefits.
I’m not sure where you live… but in my province in Canada I was able to apply for something called “Family Pharmacare” which was a major aid to me. They calculated my co-pay based on my annual salary … which ended up being a copay of $0… and my prescriptions were 80%+ covered. The downside was that pump supplies were not covered through them. Is there anything similar to this program where you live that you could look into? I know you said you weren’t looking for advice but I am hoping my post makes you realize I feel your pain, am frustrated for you, and am hoping that you can find a government program that could help with costs.

Best of luck!

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I’m afraid the distance between Canada and Georgia, healthcare coverage-wise, is more like that from the earth to the moon…

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Yes, I missed the location the first time I read it… definitely very different. @DrBB

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Oh my dear Alex. This is horrible. I am so sorry that you have to go through this—and that you feel so lonely doing it…

In my mid-60s now, I still cringe at how just plain bad I was at taking care of myself when I first moved out of my folks’ house—inept is too kind a description–I’m surprised I survived.

I found a lifeline in a single person. An older woman I worked with at my own sh#%*y personal job back then. She noticed I was struggling in several ways and started to chat with me on breaks. On the surface, I thought we had absolutely nothing in common, but it turns out, human beings always have things in common and stories to tell. You might try keeping yourself open to that possibility, anyway. Remember that most Americans know about insurance problems.

It’s also true that most Americans are truly clueless about diabetes, which is one reason so many of us here struggle with insurance difficulties. I happen to have great insurance at the moment, but even I had to fight for enough strips. And like many of us, I’m terrified of losing that insurance…

Please stay in touch with us here. Maybe all we can do is empathize, but at least this is a place where we really do speak your language…Blessings, sweetie…

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Alex, it sounds a horrible situation. Does your company have personnel department with whom you can chat, explain your problem with the insurance company and get them to intervene for you? As for the financial side, it is very hard when you are just starting out and not earning much and bills have to be paid. Make sure you put some money aside each payday so that you can pay the wretched things. It may leave you with not very much to live on, but does relieve you of a lot of stress when an inevitable bill comes round.
Things can only get better

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Thanks for venting, Alex! So sorry that you are being treated so poorly …

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Wow, so sorry to learn of this hardship. It’s actually a form of discrimination. They can’t legally withhold life saving treatments or medications. You should reach out to advocates in your area or go to legal aide. What they are doing is blanantly illegal. The other thing to do in the mean time is go to the emergency room, every time you have an issue.

It will be a hell of a lot cheaper for them to pay for the insulin.
Final note- hang in there, and document, document, document.
Life is full of ■■■■■■ challenges, half the time the win is when you figure out how to take care of yourself.
Don’t back down, your life is on the line!!
Best regards,
Justanordinarygyrl from Boston,MA

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Well said, gyrl!..Blessings

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Make sure you look into the copay assistance programs from the insulin manufacturers. I pay 25/month after the copay card from novolog. I paid something similar for Lantus as well with the savings card.

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Thank you all for listening and being so supportive. This has been a hard week for me. But, I did achieve/discover some things that helped a lot. I got some insurance assistance card for my insulin. Now I only pay $15 for my Toujeo, instead of $175 and $75 for Novlog instead of $190. Those things are awesome! I wish someone had told me about them sooner! I also started using the Toujeo because my insurance finally approved it! Woooo! I’m taking the right dose and holy crap, do I feel better. It’s amazing what good blood sugars will do for your attitude.

Still working on all the other “life” stuff, but its easier to deal with when my diabetes is under control.

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yours was one of the best posts on this forum that i have ever read. i applaud you for your courage to get it out there and not hold on to sh-ty feelings. i have had so many similar problems and i can completely identify w/ your frustrations. i am considered “disabled” because i live w/ schizophrenia and obsessive compulsive disorder, graves disease and the big T1 D. the medication i must take for the schizophrenia is mandatory; they are called anti-psychotics, and they wreak havoc on my BG levels. i go up, i go down, up and down and all over the place, no matter what i try. so, basically, i eat a strict high protein diet. it is boring and i get very jealous of others who seem to enjoy so many more foods than i can. my OCD also plays psychological despair w/ monitoring my BGs. i have tremendous anxiety about my BG numbers which i try to control w/ impossible standards for myself. i drive myself completely nuts.

b/c of my disability status, i receive MEDICARE for my insurance. i take 15 pills a day. some only have a co-payment of $10, but others, like my my insulin (novolog, for example) costs me a co-pay of $200 (just like yours). other meds i take are from consequences of D as well as other things which have not come out w/ a generic version; so i must shell out the $$ for the name brand. i am currently in what is referred to as the “donut hole” which is where you have used up all of your insurance “credit” and now must pay for everything at an almost full price payment.

i am also on the MM pump, for which i need infusions and reservoirs, as well as just having started (last year) the Dexcom sensor. I have gone through most of the challenges you have w/ my Medicare insurance policy…although my situation is different. i call them up and they put me on hold w/ some awful music for about 1/2 hour before they disconnect you and you must start the entire process all over again. i want to rip my hair out. thankfully, CVS pharmacy knows my case very well, and they have stood beside me every step of the way. also, and i don’t know if your pharmacy does this, CVS has something called “Extra Care Discount” which cuts down some of my out of pocket costs. ALSO: whenever i go to my endo, i get as many samples as possible. i get insulin (whichever type i need), i get BG Meters and some strips. i get alcohol wipes, i get bandaids…whatever i can, i request. they do their best to help me out. i do this w/ all of my doctors and it really cuts costs here and there.

in any case…i thoroughly understand what you are going through and i just wanted to express my sympathy and compassion. have you ever considered Medicaid for insurance reasons? also, if you research this on the internet, there are many many policies that can provide the extra help that you need–and they don’t all require pre-authorizations. (aren’t they nasty!!!) just try and muster up the energy to do some research and find out if there is a company that might work for you. i wish you all the best and keep sharing w/ as many people as possible when you need support, but also when you have accomplished what you set out to do; in other words: those things you are so proud of. try making what i call a “GRATITUDE LIST” every day. i have a little notebook in which i write down 1 thing a day that i am grateful for; for example, i might write down that i am grateful that i actually have something like the PUMP, b/c when i was 1st dx w/ T1D, it did not exist.( i was limited to either pork or beef R insulin, which really stunk.) When i take this notebook from my bedside table and open it up, i can read about all the great things in my life and sometimes this helps to relieve some of the emotional pain.

Daisy Mae

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Hi Alex,

I feel your pain :(. I’m 56 and have had type 1 for most of my life. Unfortunately, dealing with the insurance companies is like a full time job. And worse, for us, it’s not something that we can walk away from and take care of another day.

Good luck and keep fighting the good fight! We’re hear to listen to you anytime.

Ned

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My doc gives me Humalog. Thank god, as now that I’m on Medicare, it’s very expensive, even with AARP. Have you asked for insulin when you go to your appointments?

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Hi Alex,
How are you doing? How’s the battle with the company insurance going?
Always available it you need support!
Best,
Barbara

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Hey Alex, this I get too. I’ve been going through so much medical red tape recently and I can relate. My pharmacy can’t refill my meds because of my insurance and needless to say, I got yelled at by my doctor. Do they realize that I don’t want to have such high levels that I’m falling asleep at work? I don’t feel like self-mutilating and I think that with all this pharmaceutical drama is nerve wrecking. At some point I would pay out of pocket just to have these meds. I also think that some doctors are apart of the problem and not the solution

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Good grief! Bless your heart, Alex…I can’t imagine trying to deal with all of that. And diabetics are supposed to keep an eye on their stress level? Ha!! The behavior of the insurance company is unforgiveable…some stuffed shirt in a highrise somewhere, I wonder. Most of them walking in your shoes would have caved by now. Hang in there! Like someone else told me here, being a diabetic is a fight for life every day and honey…you are getting the snot kicked out of you…Hugs!!

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That’s terrible. It is very stressful and overwhelming - sorry this is happening. Does your employer offer more than one type of insurance plan? Could you meet with your HR department, explain your condition, and see if they can sign you up for a better insurance plan. An employer should try to provide a plan that meets peoples’ needs, and you need insulin to live, plus the test strips and stuff like that. It sounds like your employer only has a very basic plan. Try to find out if they have a more comprehensive one. In the meantime, ask your doctor to contact your insurance company to explain your condition. Maybe they have it coded wrong your insurance company needs to know that type I is life threatening and that you need insulin to live - see if your doctor explaining to them that you have type I will help provide the coverage you need, and eliminate the pre-cert / authorization thing. Maybe they think you have type II and are wondering about the quantity of insulin used - they don’t understand that you have type I and are totally dependant on insulin to live. It concerns me that you live alone with your condition - maybe your friends can check in on you to see how you are doing. The support they provide will help also. Best of luck.

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i hope things, are better, & do yours employer, offer more than one type of insurance plan, my do,.best of luck,.

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Alex, be proud that your writing expresses what you’re going through so clearly even when you’re stressed out and pushed to your limits! Well done.

I’m not about holding on to negative feelings, but - please - let me say this for you (and it might offend but the situation is deserving):

FU@& YOUR FU@&ING INSURANCE COMPANY IN THE BLEEP BLEEPITY BLEEP BLEEP.

Ahhhh. That said, I think all here who’ve so eloquently and generously responded to your generous and honest post have hit it on the head: this country is sadly uneducated concerning such a major disease, and it makes good peeps like you pay for that lack of understanding. Know we hear you. As you said, this too shall pass. And remember; that which doesn’t kill you makes you stronger. You’re strong. Know it.

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