This Is An Obsession, A Kind Of Agression With Myself
Square one and I are becoming old friends. We are accustomed to being at a particular low that I can’t escape. The longer time goes by the more hopeless and helpless I feel. If only I knew then, so many years ago, what I knew now. If only I knew what the cost of cutting one small corner would be.
Growing up you see shows about those sick kids- the ones that have never really known anything else but hospital beds and IVs and blood tests. I never thought I would be one of them. Funnier, is that they always had something horrible and obviously a death-sentence someday, like Leukemia or a congenital heart defect. I never thought I would be like any of them. And even now, I think of their faces, how despite the adversity they were facing, with their tiny, short little lives in jeopardy, they laughed through it and had unfailing faith that they still had options to exhaust. They didn’t have the awareness or responsibility to worry about paying their bills- they had grown ups surrounding them who were so horrified that a child would be dying that they never had to fear it alone.
I almost resent that innocence. I wish I had it. I wish this had happened to me as a kid, early on, when I didn’t have the experience to know what I was losing, and how little compassion people have for you when you’re not small and cute anymore.
$760 a month. That’s what I am meant to pay for medicine and equipment every month to manage my illness. That doesn’t include the extended medical I would pay for if I could qualify for coverage for future illnesses. That doesn’t include the special and expensive diet that my medical problem requires for my survival. I kissed the hope of college away at 19. My Dad didn’t want me to wait to go for something useful, he was happy for me to go even if what I took was not going to be an asset for me in the future. He told me that if I waited a year to go to a better school and take something worth taking, he would not help me. I didn’t get a chance to consider finding a way to do it on my own. I was diagnosed before that happened. The expense drove all dreams of higher education from my mind.
I was with someone, at the time, whose Father has diabetes. At the time, I had also been misdiagnosed, so it was believed we shared types. My ex thought that he knew it all about diabetes. But the information they know radically changes every year. Methods of treatment and the level of recognition given changes all the time. He would not come with me to the classes or support groups. He refused to be opposed when I tried to teach him what I’d learned. He saw supporting me as being a great waste of his time.
I was paying for hundreds of dollars worth of pills a month. I would grocery shop and buy the kind of food my dietitian recommended, which was expensive. This often meant I bought a lot less food than normal, and my ex would eat a lot of it. We would run out of hundreds of dollars in food in less than a month- sometimes in just over a week. When my symptoms became more pronounced, he would not accept that they were symptoms and insisted that it must be me. If I so much as uttered a word about diabetes he and I would have all-out screaming matches. He saw diabetes as an excuse because it’s ‘so easy to manage.’
All of the diabetics I have ever met qualified for extended medical. They pay meager amounts into their treatments, whereas I have no coverage at all and cannot qualify. I was referred to once as a “burnt down house” that someone was trying to insure for fire insurance. Who gets to decide that this is a death sentence? Well, it will be if someone doesn’t help me find away to financially manage the expense. It’s a cyclical nightmare.
I cannot get a better job with more pay and benefits without college or vocational training. I cannot afford training or school because of my expenses. But I can’t afford my expenses without training or school and a benefits program, because I don’t have a half-decent paying job. Does anyone else see my dilemma?
Lantus = $200 per 15 days
Humalog = $50 per 15 days
Atacand = $50 per month
Pen Needles= $50 per 25 days
Testing Strips = $160 per month
At the moment, I can’t even afford birth control. I can’t afford rent. I’ve fallen months behind on my cell phone bill several times this year. I owe MSP $50. I go to the food bank just so I can eat. I haven’t been able to file my income taxes since 2007. I’m a disorganized, financial mess. I lost my license because I couldn’t afford to take the time off of work to travel to see my doctor in order to have the physical exam and paperwork done. It will cost me $130 to reinstate my license. I don’t tell everyone how deep I’m in. I feel so weighed down. I’m both frightened and pleased by the fact that nobody will give me a credit card, because I need one for emergencies, but I know I don’t have the money to pay an emergency back.
Nobody knows how often I consider committing suicide. Not because I hate life, or myself, simply because it’s the most merciful solution to my problem. I’m a financial burden on myself and everyone I get close to. I can’t support myself. I couldn’t if I wanted to. Right now I only make $860 a month. I can barely afford to eat. I buy food I can afford, which makes me sick and at the end of the day requires more insulin. But I have bills and rent to pay so I reuse my needles, I only take my kidney pills once every other day (or every few days), and I take a third of the amount of insulin I should to get by longer because I have no choice.
If I pay fully, the medical expenses that I should, I have too many troubles getting by with bills and food. Then I get insensitive reception from the people who feel slighted by my poverty. In fact, I was kicked out of my house over it and had to move in with my Mom. But if I cut as many corners as I can (which is dangerous) I get insensitive reception and lectures for not taking better care of myself. There’s no understanding anywhere from anyone. Everyone looks at me like this is my fault. Everyone has a criticism no matter what I do. Everyone thinks they know what the answer is.
Only now that I have a heart problem and am facing a probably life-threatening disease that is far scarier than diabetes, has my own mother woken up and realized how difficult this has been to juggle for the last 5 years. It was like she’d never thought about it before. She asked me how I’d even gotten by this long. I couldn’t say anything. She looked at me and just knew. I haven’t. I haven’t been getting by. I’ve had to take turns lapsing my attention to one thing or another in order to survive. I’ve given up caring at all so many times, for periods of ease where I could shop for things that made me smile, so I could forget the constant struggle, only to be brought down to earth by a hospitalization or two.
My new problem is resting tachycardia (about 100-130 bpm) and super-low blood pressure when I’m standing or sitting up (80/50). I get dizzy spells and am very prone to fainting. I’m tired all the time. Even when I’m taking lots of insulin, I’m so thirsty that I feel myself drying up. I drink intensely. I’m not peeing a ton, though, so I doubt it’s blood sugar- though without Lantus I wouldn’t be surprised. The hospital sponsored me for 6 months worth of Lantus, and then somebody lost it and everyone is telling me they have no idea what they’re talking about. I had to have a frank conversation about lapsing my rent to buy insulin. I feel like my stomach is full all the time even though I’m barely eating, and when I force myself to eat I feel sick. I’m nauseous when I wake up, but fluids, some food and fresh air seem to help. I have shortness of breath most of the time, which is worsened when I eat. I stopped taking my kidney pills because my blood pressure was dropping too low, and I’ve completely cold-turkeyed caffeine. It worsened my tachycardia rather extremely. Sadly, I was a major caffeine addict, and now I get intense migraines. I had a hotler cardiogram and an ECG. No word yet, other than that it is not Hyperthyroidism. That alone is bad news. Hyperthyroidism is very treatable.
I’ve recently realized that I have to stop wondering if I should name my baby Ryleigh if she’s a girl. There won’t be a baby. Even if I could physically handle pregnancy and childbirth… could I afford to give a baby the life it would deserve from me?
I hate that lecture: Diabetes doesn’t have to control you. Only it does. It controls when I go to bed at night and whether or not I can sleep in. It controls when I eat and how often, and what I can eat. It controls what I have to spend on food, and what I spend in medical care. It controls the kinds of jobs I can have and whether or not I can have children. Even when it doesn’t make me sick, it controls my life. It always controls my life. I’ll never own a home, or be able to buy a car. I’m not even dead yet and I feel like living like this is worse. Hospitals have begun to feel like home. I even like the food.
I believe that for me, this is a death sentence. That used to scare me. Now, sometimes, I just wish it would happen already. I’m tired of struggling. I’m only 25. How many more dreams of mine need to be crushed? Okay, so at least I’m alive. But what kind of life is this? I feel like I’m fighting a battle I can’t win, and nobody is on my side.