First-Born Thief

Chronic illness can be a burden on your wallet. A HUGE burden. The reality… my wallet is filled with plastic, and that’s about all it is. Plain ol’ plastic imprinted with a bank name. I think they are worth more than the sum total of my bank account. Every appointment I go to comes with negotiating a balance that exceeds my net worth, which is a fairly depressing experience if I’m honest. It creates an initial moment of anxiety—a kind of panic when the first bills appear, but then more bills appear and the anxiety tips over into the “meh” and some comforting adage about blood from stone. Still I’m glad they no longer have debtor’s prison or indentured servitude.

I’m on social security disability. It took years, three rejections, multiple hospitalizations and a death sentence before I got it. And it’s about $900 a month, which is a big win as I’ve known other individuals earning less than this. And frustratingly, there are politicians and ignorant individuals who think people fake disability so they don’t have to work because it’s a surefire way to make it “rich”. Obviously it doesn’t. Right now I carry a medical debt that requires my paying about $600 a month into a debt management program. Ouch.

Debt management has made a huge difference in that I’m still making payments so no collection calls. But the biggest difference—they call my creditors. It’s like having an assistant to handle all the awkward moments of your life. When I had to contact creditors it would come with a paralyzing fear I’d promise my first born before the call was over. Now I just go online, enter their information and hit “add creditor” and poof!: Some wonderful person in some other state calls and negotiates a reasonable monthly amount. And I get to keep my first born or my dog, since I don’t have a child.

How Low Can You Go…

I try to write blogs as events happen rather than just write about my everyday life, which is decidedly uninteresting to all but my three dogs. As such I’ve kept this blog focused on my illness and when it specifically intersects my average life and shakes it up a bit or rather slows it down to a snail’s pace. I should say that a snail’s pace isn’t necessarily bad with the right attitude—I work hard at being relaxed rather than getting frustrated that my usual hyperactivity has become a slimy, sticky snail trail.

As I’ve written before I’ve recently been struggling with extreme fatigue and lethargy. From what I gather it is worse than the typical Lupus fatigue. When I say snail’s pace I mean it. My life slows down to zero miles per hour and I live in my shell I call my bed with three pups of varying sizes on top of me. When I first started to feel this way I also became depressed, which of course led me to wonder if depression was in fact causing this. However, after making physical and mental adjustments to the situation my mood was fine. So something else was making normal fatigue catastrophically worse (I was sleeping about 16 – 18 hours a day. My day-to-day life was spent dreaming since August).

Then there was a bit of a break thru. I saw my cardiologist this week and my blood pressure was down to 88/50. It’s hard to get up and get moving when your heart isn’t pumping enough blood for muscles and brain. My cardiologist said it was no wonder that I was sleeping so much. It also explained why I fatigued so rapidly after simple activity like walking the dogs. My BP would spike then bottom out. The solution we are now trying is very simple: adjust how I take my blood pressure medications.

I should clarify that it’s a simple solution with a caveat. My blood pressure cannot go high at all and I have high blood pressure. I’ve had high blood pressure since I was 16 years old (thank you mom for the bad genes). But things have gotten complicated now—or more complicated. It was important to control my BP due to my blood clot risks, but now things have gotten dicey. Now my doctors and I worry about my dissected artery that leads to my brain. High BP could cause it to rupture—that would be bad. Additionally, I developed AFib this year and so my rhythm is out of sync (what can I say my heart dances to its own beat). So they focused this year on adjusting my BP meds to help lower it and also normalize my heart’s rhythm.

And down, down, down it went. And I went along with it right into my bed and under my nice cuddly blankets with my pack of dogs.

I have a great cardiologist. I’ve actually been lucky to have good cardiologists since I’ve been sick. My wonderful Dr. Sengupta gave me a workable option. Take my BP daily and based on the result take or don’t take one of my BP medications. I’m on two. One is an Ace Inhibitor (which is also to help protect my kidneys) and a Beta Blocker (to help stabilize my heart rhythm). My Ace Inhibitor, Lisinopril, now sits next to my medication box waiting to come to the rescue if my BP systolic is over 100.

Now this is all well and good. But I now have to establish a routine of taking my BP daily. And I absolutely suck at routines. All routines. All my life. I have failed miserably at maintaining any kind of routine. It’s not out of laziness either—it’s out of some truly bizarre sense of rebellion: how dare I tell myself what to do! Seriously, it’s messed up. If I schedule anything I am bound to cancel it, change its due date, or get preoccupied with something else and run out of time. I am passive aggressive with myself.

So can I do it? Can I take my BP more than just three days in a row? Or will my comfy bed and cuddly puppies win out… Aren’t you just sitting there at the edge of your seat with baited breath!!

Now I feel like going to bed. Night all!