On the news, an article ran this week that talked about a boy here in Utah who had rationed his insulin in an effort to save money for his family.
My ex did that, and it could've been what cost him his life. His life with his kids, his family, his friends and our relationship. Possibly.
I could pine away today. Today would've been my 18th anniversary had my ex and I still been together and he not passed away. I made the mistake of running by the cemetary today. There were multiple funerals going on and I started sniffling but managed to continue on and talk myself out of a full on breakdown where multiple people would be staring at me bizarrly wondering who the insane runner with her dog was having a meltdown. As it was the American Legion was parked near a funeral getting ready to start right off the trail and they looked up and cocked their heads at me as i ran past and they heard the weird choke/cry/sniffle that managed to escape it's way out of me when i saw them. I just waved then wiped away some stray tears after they turned away.
It was also a bittersweet week as my youngest daughter's young friend also lost her battle with cancer this week and she had been buried in the same cemetary as my ex the day before. I cursed myself again for taking this route as I realized how unstrong and raw I was today but also knew it was one of the few ways I could go to get mileage in but still stay close enough to the kids if anything happened I could detour home quickly.
As I fought back tears and continued on my nice long 10 miler, I found myself going back to an article that had brought a lot of emotion and memories back to me. On the news, an article ran this week that talked about a boy here in Utah who had rationed his insulin in an effort to save money for his family.
I read through the article, empathizing with the cost the parents were having to pay and why their son did what he did.
My ex did that, and it could've been what cost him his life. His life with his kids, his family and our relationship. Possibly.
I reminded myself that there were many times during our marriage that we were in a position that we had good health insurance. The ten years I was employed by the hospital we were able to get him on an insulin pump, and cover his supplies and medications for very little. There were times we were on Cobra and the cost of the premiums were high but we were lucky enough to have left his company with a good severance package and great insurance that had made it even out.
When insurance started to change and Marketplace plans came into effect, we began to struggle a little bit as high deductibles made it difficult for insurance coverage. And we won't talk about the time they put us on a plan I won't mention and I literally would have to take a day off of work to spend on the FREAKING %@[email protected]^$%$^ phone to argue with the insurance company and play a game of 'which rep was right?' when trying to figure out who was telling me the truth and what the real story was on his coverage and how to get his prescriptions covered because you could ONLY go through their mail order service that SUCKED!!
We struggled more the last few years of our marriage with the change of insurance. The kids were getting older and they were getting more costly. Insulin was now costing us $200 a vial! I, the thrifter decided to find plans and helps that could help us. It often involved lengthy paperwork, sending in financial documents and pretty well writing the equivalent of a college entrance essay mingled with the skills of a grant writer to get on savings plans and receive financial help from the insurance and or drug companies. But I did it. And the time and energy googling and writing paid off. We were able to get his insulin covered at a reasonable rate along with his other diabetes and Addison's medications at more than regular coupons and savings card provided.
But I'm not going to lie because it also frustrated me too. Hours were spent putting in time and effort, at times I took off a day or two from work to get paperwork done so he could remain working and to see him not reciprocate that by taking care of himself was frustrating. From the time that we sat in the doctors office as an engaged couple, after a lecture from his doctor he would 'swear' he was going to watch himself better and take better care of himself. He gave eloquent heart jerking speeches to the doctor about how he was now becoming a married man and that he was motivated to dedicating himself to his care. And that never lasted long. He gave those same speeches after we were married and he ended up in the hospital, when he went on a pump, when I became pregnant with our first, after we had our first, our second, our third, after he started traveled extensively for work, the multiple hospital visits through the years and then as we separated. His doctor grew weary of hearing the same speeches and several times called him out on it. It was also one of the reasons he never qualified to go on a CGM by his doctor. He wouldnt even check his blood sugar enough to callibrate a CGM so why spend all the money to get one? So it fell to us to prepare the kids and myself if he was travelling and something happened. I wouldn't have technology to rely on or view. I too grew weary of the stories, excuses and of trying not to nag him to take care of himself like he asked or pitch in to help--'it was HIS disease after all' he would tell me when I asked what I could do to help or what he needed from me. But I was also more patient with him because I worked more with diabetes and saw that this was a 24/7 disease. You do get tired and frustrated with it a lot. Diabetes doesn't give you time off or vacation time--just sick days. It can be frustrating.
During the times I knew he was slacking off on his diabetes care, I would spend hours before he got home from work trying to find a way to ask him delicately what test strips he needed since I hadn't had to order them in 6 months or more or if the pharmacy had called concerned they hadn't had an order placed for anything other than insulin and pump supplies for close to 9 months. If i didn't ask just right I would be stonewalled for the night as he would get mad at me about meddling or give me some story to get me off his back like "oh, I had a doctors appointment and they gave me a new meter. I'm good on test strips for awhile." Than I would spend the night mad because it wasn't like I couldn't figure out that I NEVER saw him check his blood sugar or I wasn't going to find out his story didn't hold when I would ask my friend who had worked on the hospital floor with me and then moved to the diabetes clinic what new meter he had been given from them so I could order test strips because he made some excuse about leaving the new meter at work. My friend would just shake his head like I was speaking French. After a few times of asking him I quit asking since I already knew what the answer would be if I did.
His last few hospital stays were also frustrating. Although I now understand why, it also frustrated me that it was to the point that nothing and nobody could reach him. There was literally NOTHING anyone could do to reach him and get him to take care of himself. I couldn't reach him while we were married. I couldn't reach him now that i left. The kids couldn't reach him. His parents and family couldn't. His friends couldn't. Diabetes couldn't reach him. Addison's crises couldn't reach him. Who or what finally would??
On my anniversary, my heart goes out to those of you who have a spouse/partner/loved one you are struggling with the way they are taking care of themselves and can emphathize with my story. please know that I understand. while I will never ultimately know what caused my exes passing (there were very strong indications it most likely was an Addison's crisis) I do believe that years of not taking care of himself may have caused symptoms like this study that states "It appears that long-term exposure to hyperglycemia may have significant and measurable effects on the brain." The study also later states, "patients with diabetes were found to be more likely to have problems (twice as likely) with memory and thinking skills compared with individuals without diabetes and that diabetes has adverse effects regardless of the age at which the disease develops." (Endocrinology, 2015) Coupled with the fact that he had Addisons Disease and had to take steriods to replace the hormone he didn't make we now know that long term steroid use can cause significant issues like psychosis. Not taking medications, reducing medication dosages or an Addison's crisis can cause symptoms like "attacks of giddiness, anxiety, delirium, depression, lack of energy, sleep disturbances, agitation, and visual and auditory hallucinations." (Abdel-Motleb, 2012). We are also seeing that "diabetes and high blood sugar impose a chronic negative effect on cognitive and decision-making skills." ... Higher levels of inflammation were also associated. It can also be linked to Alzheimer's and dementia." (AAN, 2015) --This article talks about Type 2 but other providers I've talked to say that the results have been replicated with Type 1 as well.
He also had anger issues and possibly NPD (not sure if that was diabetes narcissitic personality disorder related or something else but several of our therapists found strong NPD traits). (Pelizza, 2016) --Some providers have toted the idea that those with Type 1 and an accompanying autoimmune disorder may fall into this category similar to 'brittle.' More studies are currently needed but there has been some correlation and one provider even went as far to say that Addison's and the severity of the disease when someone is under stress and has diabetes can absolutely fall under this 'brittle' category. My ex was diagnosed with Addison's, Type 1 diabetes, anxiety and NPD traits with possible NPD disorder.
I don't think an autopsy was something that would show what might have been going on inside his brain after years of neglect. unfortunately the ability to observe if there were issues with inflammation from diabetes using brain scans for my ex has passed. I can't give medical advice, but I would hope if you see something similar to my story that you would reach out to your medical provider. Your gut obviously led you here for some sort of help, comfort or answers. I know that some of you are walking a tightrope with your loved one right now much like I did, but hopefully my story coupled with your story, and the next person's story and the next person's story will help put together pieces of a puzzle for doctors, researchers, and other medical professionals so they reach out to each other to get answers, get research funded for studies and get you the help and answers you need. Us nerdy researchers love new studies and will thank you! 🙂
Today on my anniversary, my heart goes to you dealing with fighting to take care of yourselves and feeling like you are failing. My heart goes out to those of you dealing with insurance companies, high deductibles and wondering how to pay for everything. For those of you fighting to get insurance coverage for new technology that will better your care and ability to care for yourself, my heart is with you as you cry when you see the cost it will take you to do so. Today, know that someone understands what you are going through. Today my gift to you is knowing when you come across this post that you are not alone. it's not often that I open up this much, but know that I get it know that someone understands you want to do the best you can even to care for yourself if you aren't perfect. Even though diabetes is a 24/7 job, it's not a perfect job either. No one can be perfect at it and we all suffer burnout. The person with diabetes and those around you. We love you and we stay because we care. We might get frustrated too, but we are still here for you.
For those of you who are still struggling to make ends meet, I understand. I understand why you might need to scale back on your insulin because it may come down to paying for your diabetes meds or taking your sick daughter to the Instacare. I understand that it comes down to needing to take that job or like others taking a lesser paying job so you can get more help on an insurance plan. I've done that. I've been there. Trying to decide if I should earn $7000 more a year on my paycheck and eat that in taxes and deductibles and higher insurance premiums, or sacrifice that and come out about the same and better once I qualified for a better more cost effective Marketplace plan but not making as much. I've walked where you walked. Today, know that you are not alone. Do your best. Keep looking for solutions and help. They are there. And they are coming.
If you came here looking for comfort and peace, I hope you found it. If you are still searching this is an article I wrote several years ago that is still one of my most popular diabetes articles on this site, written on a night much like this one. It gives me hope and comfort knowing that so many of you still come looking for that and come across this article.
And above all, thank you for sharing my anniversary with me.
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