It's been a rough few days for me in my new additional role as caregiver. My husband and I have been presented with new challenges since his diagnosis of Type 1 Diabetes and I've encountered my own difficulty adapting.
I can't stop myself from thinking that it should have been me. I should have been diagnosed with the diabetes. What's another medical condition for someone who is already chronically ill? I'm much more adapted to handle medical conditions than my husband. I've had more practice, I've been practicing since I was 8. I'm already the patient, he's already the caregiver. He's a great caregiver, I'm a decent patient. Let me have it. It'd be much easier for me to have it, to adapt to it.
I hesitated for days to share these thoughts with my husband. They rambled through my mind, they weren't going to stop. I reluctantly shared these thoughts with my husband, I try to shield him from anything that I think could possibly make him feel burdensome or distract him with additional worry. Why? Because it's the nurturer within me, I don't want to add to his problems. He doesn't need to deal with my problems on top of his own. His unselfishness is beyond belief as he tells me I have enough to deal with, I don't need another medical issue and at least his is more manageable than my own. Perhaps there's a part of me looking for a different end game for myself than that which FAP brings.
Waiting for January 1st to roll around was hard, the date for his insurance to become effective and we would be able to fill his prescriptions at greatly affordable costs compared to the prices without insurance. The affordable prices though would have to come through the mail order pharmacy, which means increased wait time to receive the much needed medications. The hospital's diabetes nurse sent over his prescriptions electronically. Electronically is a wonderfully speedy innovation to quickly obtain a script. My only issue is that without a paper script that I can see, I can review and I can submit myself...well it takes more control away from me. My severe mistrust of providers and my own paranoia of what could go wrong in various scenarios has left me with a strong need for control wherever, whenever I can have it. I've had nurses submit scripts without my review that cost me large amounts of money, without providing the brand name or the correct number pills. A misfortunate experience as I couldn't refuse the medication due to receiving it through mail order rather than local pharmacy. Once it's delivered, it can't be returned with a refund. So you can imagine my mental hand wringing as I patiently waited to confirm the correct script was sent and received by mail order. Let me have the script.
But that's not the only nerve wracking challenge we'd encounter this week. When I called to confirm the insurance had been approved and scripts received, to my horror I was informed that his insurance is still being manually reviewed due to the late enrollment so close to the end of the year. I broke into tears while on the phone. Insurance means everything to me. Without my insurance, how would I have been able to survive my own health issues. I wouldn't be able to afford my medications, my medical care. My personal attachment and dependence upon my insurance left me paralyzed when we discovered my husband's insurance had been cancelled in 2013 and we hadn't received notices. And now, we had to wait even longer for his insurance to be approved. Sure, it would retroactivate to January 1st, but in the meantime I'd be faced with high out of pocket costs if his insulin were to run out before insurance would be approved and mail order insulin would be received.
Waiting is paralyzing. Waiting to find out if my hardship application for the hospital will be approved. Waiting to receive bills that don't have hardship applications available. Waiting to find out what we owe after it's all said and done. I'm scared to spend any money, even for essentials. Everytime I have to make a purchase, I think Will I need this for a medical bill we have yet to receive?
I just had to think of the additional issues that could surface, and they did as if summoned. That night, my husband informed me that his insulin would run out by early Tuesday. Not enough time to receive insulin through the mail, at the more affordable price. The insulin he currently uses would be too costly to continue, even with a future reimbursement for the out of pocket cost.
The local hospital pharmacy had called to send an assistance application for medications earlier in the day, before I knew about the rapidly approaching need for more insulin. But it's Friday night, my help options are running out. This is an urgent matter, it's urgent for my mental sake. I need this resolved and I need it resolved fast. I slept through the night with nightmares about our obstacles, my mind went through every possible scenario regarding insulin and insurance. Each scenario passed without resolution. I'd awake and it was on to the next attempt in my sleep to solve the issues. Every moment awake, I was terrified I'd forget to try outside of my dreams once the morning came. Now I had a mental to do list to maintain amidst the nightmares, the fears, the terror. Six hours this went on. Until I finally broke. I have used poetry as a therapeutic measure after surviving the nightmares of my first year following the first surgery. I hadn't written any poetry in over a year though. My inspiration tends to come during the night, the time I'm desperately trying to sleep and I mistakenly think the inspiration will remain through the night and following day for me to listen. But it doesn't. My muse tries to teach me either I write then or I won't be able to write. This time I listened and I wrote.
My mind wanders, reeling with fears of the worst
Time passing slowly, dauntingly
If only life could jump ahead
Questions answered, solutions found, worries quietened
Strength tested and pushed to new limits
All that was known, turned and changed
Unfamiliar and trying, time is only sparingly vacant
Adapting, learning, struggling unceasing
Fear becomes all consuming whilst the mind wanders
The load weighs heavy to shelter my new charge
Mustnt show my lapses, must remain strong beats the song
Heart fights the battle, distracts the mind, and hides the difficulty
Are these fears shared with my charge, I dare not press
Guilt accompanies such curiosities, how dare thee ask
Shielding from extra burden, enough is there
This is mine to bear, a chance to return all the care
But it wasn't enough, I've been trying to maintain a strong face for my husband. My own fears keeping my heart caged, guarded, stifling my own needs to keep my husband's wellbeing safe. Or so I thought. The dam was failing, my muse had pushed me. I couldn't maintain my silence anymore. I hate waking him during the night, I hate robbing him of his much needed sleep. I had to share all my worries and risk him thinking I viewed his new medical status as a burden. I released all my emotions and wept in his arms. Panic began to set in as my mind took me to vials of insulin rather than flexpens. I can't give a shot. He gave me my B12 shots. Can he give himself a shot in the arm? The strength of a single thought is overwhelmingly powerful. One thought can push one over the edge. My mind began to spiral with that first thought of an insulin vial and needle. Now a new panic is setting in. I can't breathe. Normally I feel like I'm having a heart attack at this stage. But I'm not. It's different, it's my abdomen not my heart. My stomach feels like it is twisting within me. I grasp my stomach, my husband grasps me to keep me from writhing in bed as I desperately try to stop the twisting. How is this happening, it's not real. Stop! I have to stop my thoughts, I can't do this alone. I can't handle the twisting. My husband distracts me with random stories and my mind begins to ease, the twisting reducing. With my fears quietened, the twisting stopped, my emotions drained, I was finally able to sleep without nightmares.
I was so exhausted by morning, I couldn't stay awake. I slept peacefully for six more hours, my mind exhausted, unable to function without some restful sleep.
By the time I dragged myself from bed, the diabetes nurse returned my emails about our dilemma and advised of over the counter insulin. This can't be a long term solution but it can get us through until the insurance is approved and the mail order insulin can be received. 1 vial will last about a week. If insurance is approved by Monday, I can get his insulin pens by the following week.
The damage was pervasive on my psyche, every moment waiting to receive any insulin tore my mind apart. We went to the local pharmacy. Time stood still as I waited my turn. Would it be available, would they be able to help me, would it be the affordable cost I was quoted by the nurse? Breathe, I reminded myself as I shook in line. It was my turn. The time slowly passed as the local pharmacist reviewed his current insulin to match to the closest over the counter insulin. Please, please just let me have it. I beg you. Finally, the transaction is complete. I grasp the insulin with dear life. I need alcohol swabs, I survey the shelves among the aisles. I can't find it, I can't focus. I stare blankly. Panic is setting in. I hastily walk up and down each aisle, scanning each shelf. It's not working. I need my husband. The tears are coming. I need the swabs. I need to take care of him. I need to see him okay, to see solutions, to see everything come together.
Once home with everything we need, I begin to relax, to think more clearly again. I begin to focus more. I know what I need. I need the insurance to be approved and I need our first mail order to be received. Then we'll be within that routine. I need a routine established. There's safety within a routine. Unpredictability to be lessened. Unpredictability is where you're caught off guard and rattled, where you're pushed and stretched, thrown to what you don't know, with uncertainties at every turn.
I notice the symptoms. The stress, the worry is weighing too much. I'm slipping. It's so easy to slip into that dark well of despair, of depression. It's been home for so many years. It's familiar, I know it. It holds me like its own. I know what I need to do to break free of its grasp. I know all the options to fight it. I've used them all, I advocate for them all. Medication, private counseling, support groups, informal peer support. But I'm also stubborn. I'm the last to agree to start using these methods in spite of my husband's regular urging. I try it out on my own for weeks first, leaning only on my husband for support. I don't want to become dependent on any of these methods again. I spent years mentally surviving only because of these various methods. I want to survive on my own. If I can't, if I must depend then I will but not until I prove to myself I can't climb out on my own. I struggle, I fight, I push.
I think back on my own health struggles. The times I was left to fight for my life for the second prolonged period. Was it really a struggle? Was it this hard on me as the struggle to see my husband safe is now?
The memories blur over time. I remember two feelings during that time. Peace and terror. Peace came to me while I was near death. I'll never forget the serenity of being in death's arms. There is no earthly peace like that of death. Nothing as comforting. Sweet, sweet death.
And then I remember the terror. The terror brought on each time I endured, I survived a medical test or procedure. Being ill doesn't seem so bad. It was the pain that the tests and procedures inflicted that was so hard, that pushed me closer to death's arms.
I question my memories, why is the stress so much more now. Why do I almost recall my fight for my life as easy, as peaceful except for the pain. Stress. That's why. My only responsibilities during my own fights were to live and to complete my studies. I didn't have to work to live, my parents had me, they caught me financially. Now my parents would do what they could to help us, but they wouldn't be able to support us financially. I have to work, he has to work. We have to financially survive too, not just physically. There's more at stake than just physical life, it's our livelihood.
Isn't it interesting how the stage of life we are in at the time affects what we experience, how we cope, what we focus on, what our needs are. So much is affected by this, it shapes us, it changes us. How lucky I was to struggle during an earlier part in my life, when I could easily be caught by my parents. When my livelihood wasn't mine to stress about. When I could just focus on surviving.