The Cure I Need
In yesterday’s poem, I made sure to mention the ever-present diabetes guilt from which I’ll surely die if diabetes doesn’t kill me with a heart attack or stroke first. It’s been particularly weighty the last few days because of a little confusion at Walgreens Pharmacy which sent me into a rant once we left the store.
As I’ve said previously, I’m on COBRA at the moment. My former employer had their open enrollment period in September, so as of October 1st, the rates went up – of course – and we no longer have prescription coverage through Horizon Blue Cross/Blue Shield of New Jersey. We still have health insurance through them, and my durable medical equipment, i.e. pump supplies and CGM supplies, if I can ever get that straightened out, are still covered by them. We now have a separate prescription plan through another entity though. I’ve never had my prescription plan separate before, so this is new to me, and I had never heard of the plan company either, WellNet. WellNet has some association with CVS/Caremark because that logo is on my new prescription card. I don’t know if it’s a partnership or if WellNet is some kind of subsidiary or what. Anyway, as I was just saying to a good D buddy of mine, change is uncomfortable, and the anxiety I had about dealing with yet another organization to ensure my health care needs are provided was palpable.
Last week, I went to the Walgreens website to refill my prescriptions, insulin, test strips and 5 or the 7 pills I take. I knew they wouldn’t be able to fill it until I went in so they could see my card, and as expected I received a phone call the next day from the pharmacist telling me as much. Saturday night, wanting to go take care of that, run to the craft store, and get crickets for Dexter, I asked Jason if he wanted to come with me to run my boring errands. He said he did, so we went.
As I feared, there was naturally a problem with my prescriptions. The technician told me I couldn’t get my usual 90-day supply. The plan limited me to a 30-day supply. I was annoyed. Now, if I had to go there every month to pick up meds, it would be a slight annoyance, but not a big deal. I pass by the Walgreens all the time so it’s not like it’s out of my way or anything. The problem was with my insulin prescription. After some confusion about how many bottles I was getting at a time several months ago, I figured out the best quantity in which I should get my insulin prescription isn’t 90 days but 60 days. You see, I take about 1 ½ bottles of insulin per month. Regardless of how many month’s worth I get, I can’t get more than that quantity per 30 days. So despite the fact that I need 1 ½ bottles to cover 1 month, I only get 1 bottle, so I end up short. Despite the fact that I need 4 ½ bottles to cover 90 days, I only get 4 bottles, so I’m also short. However, just like Goldilocks, it was that middle option that suited me just fine. I need 3 bottles to cover 60 days, and so I’ve taken to getting a 60-days supply.
That’s why I was fuming as I left Walgreens with a bag full of drugs that would last me 30 days in hand and Jason close behind me, knowing how irrationally infuriated I get whenever I encounter a roadblock to getting healthcare since as a diabetic, I feel like all I do is trip over said roadblocks, and pick myself back up, only to encounter yet another. The never-ending injustices of having diabetes are more multilayered than anyone except those who live with it will ever understand.
We got in the car, and Jason headed in the direction of the craft store, while I half explained to him the problem with the insulin quantities and half processed this out loud. While I’ve been tearing out my hair trying to get my sensor coverage straightened out for the last 3 years now – the year I spent trying to get it, and fighting to maintain coverage for the two years I’ve been using it – I hadn’t had any issues with my prescription coverage through Horizon, thankfully. I ordered my prescriptions, picked them up, never a problem. I was terribly displeased about this turn of events.
Then, in an effort to appease myself, I said something like, “Well, at least I’ll be on your plan in four months, so this is one thing I won’t have to deal with for long.”
As soon as it came out of my mouth, I knew I shouldn’t have said it. Not that not saying it makes it not true, but not talking about it keeps the worry and stress of the 25% pay cut Jason will take when his health insurance payroll deduction jumps 625% next March 1st. As I sat there silently cursing myself for having brought up the subject, Jason was silent, and like I’d fallen off the Titanic into the ocean, the guilt swallowed me whole
A few minutes passed, and I looked over to inspect him for any signs of… well, something. He stared straight ahead, the taillights of the car ahead of us illuminating his stoic face.
“What are you thinking about?” I gingerly inquired.
I don’t recall his exact response, but it was what I expected. He expressed concern about the impending reduction in his take-home pay, and what that would mean for us..
Our evening, which had been cheery enough up until the trip to Walgreens, had completely soured. Jason ruminated over how we would get by on just his paycheck minus $1000/month that would be paying for me to be added to his policy. The money I’m making counseling at schools a couple of mornings a week is paltry, not even making the difference between what he’s making now and what he’ll be making once I’m on his plan. I was wishing there was no such thing as insulin therapy so I wouldn’t feel like such a f**king burden to everyone in my life. Without insulin, I would have died in 1978. Yes, my mom would have been sad, but it couldn’t possibly be any worse than the constant drain on time, money, and energy I’ve been for the last 31 years, and will continue to be for some unknown length of time. At this point, we were at the next stop, but why we were even at the craft store just seemed meaningless and irrelevant. After cruising up and down a few aisles, pretending to be interested, I declared it was time to move on, get Dex his crickets and get ourselves home. As if I could leave my guilt there on the shelf with the picture frames in the craft store, I wanted to get away from the store as fast as possible.
I used to punish myself by not taking care of myself. I felt guilty for existing, for having a chronic disease, diabetes. I think that guilt is at least one of the underlying causes of the depression, yet another chronic condition with which I live that must be treated and managed. They consumed so much of my mom’s time and money when I was younger. To some extent, things have changed. I take care of myself, but they consume much of Jason’s time and money now. I mean, I really try, but I’m still a drain.
Driving home, I imagined Jason reaching the point of no return, when the disadvantages of being married to me tip the scales, and the benefits of being married to me just don’t add up anymore. I imagined the sense of relief he would feel to be with someone who isn’t chronically ill, the weight lifted, the burden removed, the sense of responsibility evaporated. How is that not tempting? I would be devastated if he left me, but the honest truth is that I wouldn’t, I couldn’t blame him. If it were as easy as walking out the door, hell, yeah, I’d be gone.
I don’t know how to live with this guilt. Diabetes is nothing next to this. At least I understand diabetes, I know how it works, I know how to manage it. It’s certainly not perfect, obviously, but the basic mechanics of it are something I can grasp and face. The guilt seems inescapable though. Am I the only one who feels crushed under it? I know Jason and I said our vows, “through sickness and health”, but he didn’t really know what living with a diabetic person entailed anymore than anyone who’s never been to war really knows what it’s like to live under those conditions. I can live with diabetes. If it’s never cured, at least in my lifetime, I don’t care. I accept that. It’s fine. It’s the guilt that’s killing me. I’ve had it since before I knew what it was, and it’s no better now than it ever was. So yes, I do want a cure, a cure for the guilt because it’s more than I can bear anymore.
Something is wrong with that insulin amount. If your doctor prescribed a daily dose of say 80 units/day, you would get 3 vials. Tell your doctor to do that! You know you have to calculate primes, extra and fluctuations, etc.
Your prescription needs to cover that.
90 day supply is only available by mail order on the CVS/Caremark plan.
I do my pills with that, but not my insulin.
Comment by Susan — November 10, 2009 @ 7:08 pm
Guilt is the worst possible form of torture diabetes can take on us. I’ll take the complications if they came guilt-free. I’ll take the shortened life if I can live it free of guilt!!! I just feel like diabetes robs us of living life to our fullest potential – when I get to feeling guilty, it sure doesn’t feel like i am living that way, even though physically I can live the same as everyone else (to a certain extent). The mental health aspect of diabetes is the hardest part. (I know I don’t have to tell you that – I just want everyone to know!!)
Happy thoughts and prayers are with you my friend – things will work themselves out.
Sarah
Comment by sajabla — November 10, 2009 @ 7:14 pm
Lee Ann,
You are not alone. I feel this guilt. I have mentioned to Alvin multiple times that he would be better off with someone else that won’t require constant attention to the fact that if I fall asleep on the couch… you have to worry that I might not wake up. He had to call 911 for me in 2007. We weren’t married yet and he had come over to make dinner for me. I sat on the couch and woke up with him feeling for a pulse and on the phone with 911 because he couldnt find my glucagon. I have never forgotten how mean I was to him when I finally came to still too low to comprehend what was going on and I felt angry at him for calling 911. I cannot imagine how he dealt with that and still chose to go through with our wedding. Like you, I would never blame him if he chose to leave.
However. He, just like your husband, loves me (you) no matter what. No ones life is peachy all the time. And we are lucky to have men in our lives that want to help and can help us. Our diabetes is huge. Our diabetes is a nuisance and never goes away. Kind of like their dirty socks.
Only those wont kill anyone. The deal with marriage is that we as adults chose to live with each other without any guarantee that things would be perfect. That crazy life with this person is way better than perfection without.
You are loved and worth it. Just like me.
Comment by casey — November 10, 2009 @ 7:17 pm
Your not alone- we all have diabetes guilt and have expressed it in our lives and our blogs. You have person who loves you, diabetes or not, and you love him.
For better or for worse, and sickness and in health- you deserve to be loved and cherished- so does he. Don’t sell yourself or your husband short- you are indeed worth your weight in gold.
LeeAnn, this might sound nuts, but have you considered hiring a Health Advocate to look into Jason’s benefits verses buying into your Cobra plan? It would could a couple hundred bucks, but a Health Advocate would provide you with a cost Analysis breakdown of the two health plans,options, and economical costs and benefits of each plan for your needs, both medically and financial.
Comment by k2 — November 10, 2009 @ 7:35 pm
Maybe this is why I am still alone. As much as I hate being alone, the idea of being a burden to someone I love, when I already feel that for family and friends….I don’t know. Guilt kills. Guilt is awful. It’s hard to ignore though.
k2 is right, you are so worth your weight in gold, no matter what. Jason loves you, you him. Somehow, it Will work out. ((hugs))
Comment by Crystal — November 10, 2009 @ 7:52 pm
Guilt sucks. And the seemingly eternal vigilance that diabetes requires causes even more guilt. Please talk to your dr about changing the stupid prescription to say something like “take 60-90 units per day as indicated by blood sugar testing and meals” – I had my dr do that when Mr Thyroid went berserk and raised my TDD from 28 units a day to over 80 and my insurance had decided I didn’t need more than one bottle a month. We also never changed the labeling now that it’s back to something reasonable, to ensure I have a safety net.
I completely understand your frustrations, and want to echo the others. You are not alone. You are worth it. Things will get better.
(((hugs))) and vent away, it’s why we’re here.
Comment by val — November 10, 2009 @ 8:40 pm
Oh, trust me, there’s guilt on this side of T1 related to medical bills and health insurance.
I’m not the one providing insurance for us (almost did a few years back when I had a better plan with a previous employer). I’m not the one having to spend all this money to keep myself alive – he is. It’s our money, but he pays for it out of his paycheck. I’m not the one.
Yes, T2 for me threw a wrench in that thinking, but overall, I still take fewer pills and take less of our income away.
In the end, though, it’s not about diabetes and the cost of it all. It’s that I love him dearly. It hurts like mad sometimes to watch the ups and downs and the out-of-pocket expenses. But I still love him dearly.
Comment by Rachel — November 10, 2009 @ 8:43 pm
This post brings up so many different emotions for me Lee Ann…on so many different levels, much of it goes through my mind nearly on a daily basis, especially the guilt… some I never thought of until tonight & maybe someday I’ll share more but I think being honest with yourself is one of the hardest things we ever have to go through…I may have just been slapped with a reality check I was not expecting but am blessed to have realized it tonight…
Comment by Jaimie — November 10, 2009 @ 10:04 pm
LeeAnn, what insurance costs $1,000 a month to add a spouse? I think you need a health advocate if it is that much. that’s rediculous!
Comment by landileigh — November 11, 2009 @ 1:44 am
Leeann,
I am so sorry to hear about this. Can you tell me what this para means
“Jason ruminated over how we would get by on just his paycheck minus $1000/month that would be paying for me to be added to his policy.”
Are you paying $1000 to be on Jason’s plan? Which insurance company is it? That sounds ludacris…
Comment by gina — November 11, 2009 @ 1:49 am
[...] read Lee Ann’s post over at the Butter Compartment this morning about guilt and I could really relate. My husband had planned to stop at Walmart last [...]
Pingback by Real (Pregnant) People Sick « A sweet journey to motherhood — November 11, 2009 @ 7:21 am
Leeann – I realize you’re on COBRA – but who is your COBRA coverage through? Is it through Horizon? And if so, are their pharmacy benefits still handled through Caremark/CVS? I used to be a Lead Customer Service Rep for them before I went to work for ICE, and still have contacts within the company that may be able to help with the amounts that you are getting on your 30 day supply of insulin.
Bob
Comment by Bob — November 11, 2009 @ 7:45 am
Lee-Ann,
My first hubs was T1, rcvd a kidney transplant in 1982 and passed soon after because he would not give up smoking. I feel the need to tell you that management has come so so far. When the 1st hubs died oddly enough his name was Joe as well, we were still peeing on a stick, disposable needles were the new talk of the town and what was this insulin pump you speak of. He was one of the first younger diabetics to receive a transplant, which would have took, had he not gotten pneumonia from the cigs and anesthesia. He was 38 when he died. I was 26 with a 2 year old baby and 2 step children from his previous marriage. The options out there were so limited- there were no glucose meters of any kind- imagine how inacurate old peepee was to check your glucose levels. You are not a burden – trust me. I was lucky enough to fall madly in love with another Joe who just recently was diagnosed with T2- I know a whole different ball game, but burdens, no, no, we are here for each other- imagine how boring life would be. I think that this burden you are carrying around with you can be turned upside down and make you a more compassionate, caring person for others, and if the tables were turned, I believe that you would be there for Jason-
I also hope you have faith in a higher power as cheesy as you may think that sounds. You could become a health care advocate for someone else with all your knowledge- think how powerful that would be and what a difference that would make, and what a difference you do make with counseling children.
So as another day is beginning, albeit very windy and wet, you are special to many- but none more than your family and us here cause we understand, your everyday friends……but the crickets……maybe not so much-lol!
Ginny (josrider)
Comment by Ginny — November 11, 2009 @ 8:45 am
Lee Ann
It seems like many people feel the same way you do about the guilt. I was just proposed to by my boyfried of 2 years I love him more than anything. And there have been times when I couldn’t pay for groceries of what not because I had to pay for a medical Bill. Because I don’t want him to have to pay for my medical bills. Because if I let him do that I would feel horrible about myself.
And see because of how well known you are there are already people trying to help you. I think thats something to be positive about.
I hope things get better for you and that you find ways to make the guilt go away.
I love your Blog by the way.
Thank You,
Heather Basey
Comment by Heather Basey — November 11, 2009 @ 5:10 pm
I am so behind in reading blogs this week so I just got to this one. Oh LeeAnn, I can relate to the guilt over the whole insurance thing and feeling like a burden. My husband and I had an argument about his job which he is about to lose because of a layoff that is coming. He was frustrated that I was pushing him to find a new job now, while he has one and he blurted out “I hate this job! I have only stayed there because the insurance is good!” I wanted to crawl under the floorboards and wither away as he realized what he had just said. I hate that he has stayed in a job he hates because he wants to make sure I am taken care of medically. It broke my heart! We talked it out and all is well now but I feel so guilty. It’s not like I asked for diabetes or anything but somehow I feel like it is my fault that we have to deal with this crap. On the bright side, my own insurance policy with my new job starts covering me next week so I am glad to take that burden off of my husband for awhile.
Comment by suzanne — November 14, 2009 @ 5:52 pm
Wow Lee Ann, what an amazing post.
You have a real gift for taking these vague things that are inside my head and putting the perfect words to them.
“The never-ending injustices of having diabetes are more multilayered than anyone except those who live with it will ever understand.” is so true. Mental, Financial, physical, and multilayered within each facet of it.
I love Casey’s comment. And I leave dirty socks AND diabetes drama behind! Damn. :-p
Comment by Scott K. Johnson — December 1, 2009 @ 5:22 pm