A Day In The Life, Financial Tetris, and Small Yays

Photo by Mikhail Nilov on Pexels.com

Early Morning

7 am:  What time is it? You can’t do anything until 8 or 8:30, S, so go back to sleep.

7:52 am:  Request to cancel telehealth appointments, explain reasons for cancelling, try to resolve Astronomical Bill aka Bonafide Problem. The same Bonafide Problem we’ve worked on resolving for the past eight months that they swear is fixed but always isn’t. AB aka BP is the result of miscommunication and not processing insurance claims correctly, but this time it has messed up my accounts. And I’m ticked off.

8:00 am:  I’m put on hold, transferred to another department, and transferred again, all while listening to what would otherwise be cool music if I weren’t so agitated.

Promises, more promises, and possible (God, I hope so) refund.

9:00 am: Borrow $XX.00 from stepdad for possible fees created by issue, find out I’m not the only one who has experienced this hot mess, and that The-Medical-Facility-That-Shall-Remain-Nameless is notorious for doing what they did. Thankfully, all overdrafts and fees are waivered (hooray).

9:52 am: Debate returning stepdad’s money since I didn’t use it. Glance at gas gauge. Ask myself, If the arrow is pointing precariously toward the little red icon, can I drive for, say, four more days before refilling? Self to self, And how has that worked for you before, S?

I keep $5, text stepdad, and return the rest to him.

10:20 am: On to the next hurdle. But I need a snack. So, I plop a bag of peanuts and a Pay Day candy bar onto a conveyor belt. They’re both $1.19, so I go with plain peanuts. Less sugar, perhaps? Maybe when I have my A1C check the doctor will thank me, or I’ll thank myself.

10:30 am: Question, what can I put with coleslaw? Chicken wings?  M doesn’t eat chicken. Burgers? I can’t digest ground beef, and I can barely tolerate ground chuck. I look at the prices and have a slight panic attack. It’s honestly the wrong grocery store for buying meat, and the least horrifying packages are the packs of ground chuck, so burgers it is.

Conflict, do I use the $5 that I’m holding for gas, or do I dip into bill money? I contemplate riding on E but then adult reasoning kicks in.

11:00 am: “Seven dollars on pump four, please.” Self to self, This’ll barely get me home.

11:30 am: Stop at car insurance place. I’m due a retro credit, if that’s a word, for the multi-vehicle discount per month that I was promised August 2023 but haven’t gotten since…forever. “Has it been credited, and if so, what does that make the bill for this month?” I ask, all excited. The receptionist gives a figure, and I realize it is suspiciously close to what I already pay. So, I ask how much they’ve credited. “$2.22,” she says.

 Of course, the person I spoke to initially isn’t in. Of course, the computers are down. Go figure.

Afternoon

11:45 am: My chest hurts which reminds me to call the cardio clinic. Ironically, I must cancel my next checkup because I can’t afford it. I relay my dilemma to the scheduler who asks if I want to reschedule.  I don’t foresee having any more money later than I have now, so I tell her no, not yet. I request my medical records and leave a message for their heart monitor tech.

12:00 pm:  Self to self, Six more days. Six more days of meals to figure out. What can we eat for six more days at, say, $4 a day that is heart-healthy, glucose appropriate, and inflammation-free. Think, S, think.

12:10 pm: Chest still hurts. I need a chill pill, but if it cost anything…welp.

12:15 pm: I get a text from Mom. She wants to know if I can go with her on an errand. I SO don’t feel like going anywhere with anyone today. So, I text Not today and tell her about the last few hours. Then I change my mind and agree to go with her on her errand.

12:20 pm: While waiting for mom I recalculate and try to come up with a sensible formula for the rest of the month.

PLAN A

XXX.00

XXX.00

XXX.00=_________________       BUT THEN HOW WILL WE EAT                 ???

PLAN B

XX.00

XX.00

XX.00=___________________      BUT THEN HOW WILL I PAY THE ELECTRIC BILL              ????

PLAN C

X.00

X.00

X.00=______________________  I GIVE UP            ???

12:40 pm: Nephrologist, reschedule. Chiro, reschedule. Rheumatologist? I need that one, asap. I’ve already gone too long, and my finger is all crooked and hasn’t worked right since September of last year. Ophthalmologist? Despite paying the balance down, another checkup will wreak havoc. But my eyes are swollen, and I’ve had no shortage of folks telling me that my eyes “look weird.” They’ve been weird for so long I can’t tell the difference, so I glance in a mirror. Something is definitely wrong. I snap a picture for proof just in case my eyes decide to behave on the day of my checkup.

1:00 pm: Mom toots her horn. I wave to let her know that I’ll be out in a minute. Mid-wave my stomach misbehaves.

No, S, no…

1:00-1:15 pm: Stomach turbulence

1:20 pm: (Mom) “You’re still going? We can stop by my house if you need to.” (Me, while gripping stomach) “Yes, I’m dressed now so I’m going. Let’s ride.”

1:30 pm: A small blessing (hooray, hooray, hooray)! Less calculating now and a little more leeway. Head to Dollar Store.

2:00 pm: Heart monitor tech returns my call. We discuss options. I ask if my loop recorder can just…come out of my chest or turn off or maybe send a remote scan less frequently (I get billed every time it sends a scan. Not the full cost but costly still. Every month.)

Tech says they could turn the remote part off and I could manually use my clicker whenever I have an episode. However, I’d then have to drive 30 miles to the clinic and have them read it there. That’s gas, driving, a clinic fee, and a reading fee. Plus, sometimes my heart stops for a bit while I’m asleep. So, how would I manually capture that if I’m…asleep? I ask the tech and there’s a long, awkward pause.

We both decide that I’m better off leaving things as they are, and the tech recommends I set up a payment arrangement.

2:30 pm: I call for a payment arrangement and I’m told that the current bill can only be split into 2 payments aka 2 months. I mentally divide.

Lord Ham’mercy.

2:45 pm: I call the hospital where I had my in-house sleep study and ask about payment arrangements. The billing clerk informs me that it’s “only $XXX.00” as if that’s chump change or four quarters, and no matter how many times I say I can’t pay the bill in one installment, even if it is “only $XXX.00, she repeats the same thing. So, I say thank you and hang up.

3:00 pm: Ditto. See above. Same thing, different place.

3:10 pm: I get a text from a friend asking if I can type up a resume. I don’t feel like thinking or mentally exercising my brain anymore today, but I ask her when she needs it. She says she needs it by Wednesday. I need the money, but I’m exhausted. Still, I agree to do it and we confirm for tomorrow.

Early Evening

4 pm: Someone washed their hair (my kids have hair down their backs), and now the tub is stopped up. We already have a plumbing prob (see earlier post on plumbing prob), and water has been sitting in the bathtub for two hours already. I pour Dollar Store generic Drano and pray it works its magic. I text Mom and ask if we can borrow her bathroom.

5:51 pm: The Dollar Store $1 Drano didn’t do anything, at all. No magic. Water is still sitting in the tub.

6:30 pm: Mail, bills, and mail. But also, another small victory, another hooray (yay, yay, yessss)!

And how was your day?   😊

On Fitting In With Autoimmune Disease(s)

You glance at your calendar. Every square is occupied. Monday is that doctor appointment that you rescheduled twice already. Tuesday is bible study. And if someone doesn’t go to the grocer by Wednesday the only thing left to eat will be saltine crackers and raisins along with a bottle of expired Worcester sauce.

Thursday is your daughter’s theater club extravaganza, and Friday is her checkup with the doctor. Saturday is a student award ceremony that you just learned about a couple of hours ago that begins promptly at 10 am on the only day that wasn’t marked up on the calendar. And Sunday, the long ago coined “period of rest” is looking like a goner, too.  It’s time to bring your a-game. Time to ante up. Except the unthinkable happens. In the middle an over-sched schedule, a flare up starts.

Sound familiar?

If so, you probably have a hundred stories like the one mentioned above. It’s called living life, fitting into society, navigating the unknown while dealing with an autoimmune disorder.

Last week for me was challenging to say the least. I felt like someone struck both knees with a hockey stick, pierced my eyeballs with a needle, and placed a set of tap-dancing beetle bugs in my stomach. Actually, it was just a bout of arthritis, tear duct blockage, stomach upset, and bladder spasms but by Wednesday I was unable to can. At. The. Absolute Worst. Possible. Time!

I delegated what I could, which is something that took me decades to learn and, thankfully, my friends and my family are better at understanding what an episode means and how it affects me physically, mentally, and emotionally.

However, fitting in while battling an autoimmune disease or in some instances multiple autoimmune diseases isn’t easy. For one thing, folks dealing with whacked out immune responses are TIRED. Fatigue is a surname. The stamina it takes to enjoy activities and events just isn’t there and unfortunately gets misread as aloofness or just not wanting to take part. This misconception in turn wreaks havoc on friendships and relationships which creates depression and anxiety. Frankly, we want to do fun things, but we’re exhausted.

Then there are misguided and frustrating phrases like:

• But you were fine yesterday
• You don’t look sick
• You’re always sick
• Are you sure you’re not just being a drama queen/king
• That’s all the time isn’t it
• I thought you just went to the doctor last week
• I already knew you wouldn’t come, so I didn’t invite you
• You need more germs. That’s what’s wrong with you
• You need more vitamin C, echinacea, aloe juice, apple cider, this miracle drug
• Have you ever tried [insert illegal suggestion here]
• You don’t exercise enough
• You’re doing too much
• You’re not doing enough
• You need to tighten up
• You need more faith
• You just need a man/woman
• You just need to move somewhere else
• You just need to relax
• You just need more sleep
• You sleep too much
• Forget about it and it’ll go away
• You worry too much
• You should worry about what’s happening to you
• What’s wrong with you
• Never heard of it
• I could deal with [insert autoimmune disease here]. What I can’t deal with is my boyfriend, job, [insert whatever comparative thing well-meaning but insensitive friend says here]

Here’s a crash course. Fine yesterday does not mean well today. Most autoimmune diseases are unpredictable. Not looking sick is a great compliment, and we’re glad we don’t look like what we’ve been through, but by golly we’ve been through a lot. A healthy appearance is more like being in costume on set, it’s an act.

Yes, we probably mentioned a doctor, or two, last week but guess what? We have another appointment (or two) this week.

Send the invite anyway. It’ll make us feel better, and even if we can’t come, we’ll know that you thought about us.

Maybe we do need more germs, and that could well be 50% of what is wrong with us, but those germs tried to kill us last time. Even a basic cold isn’t what it seems. What starts as a sniffle escalates into multi-system mayhem. Speaking of which, auto-immune means our body attacks itself. In simple terms that means our immune system is already on CRUNK. So, adding immune boosters is like giving—well, you get the gist, right? As far as illegal drugs, I can’t speak for everyone but I’m not into that. My body is crazy enough as it is.

Flare-ups are rough, so when we hear the word “exercise” when our bones are saying, “$#!^”, strenuous physical activity is the last thing on our to-do list. At the same token, on tolerable days, we likely do too much. Take-my-butt-to-bed and Take-on-the-universe are endless cycles in the world of auto-immune disease. So, we have to be sensible and do what our bodies can REASONABLY do when they can do them or else it backfires.

Faith and hope keep us positive and moving forward, but we can’t measure the faith of another nor should we try. My faith is my business, other folks’ faith is their business. And from experience there are still going to be times that a person’s body just…hurts.

Yes, I need to relax more. Goodness yes, I need sleep. A couple of million dollars and a significant other wouldn’t hurt either, but again, there’d still be times when my body just…hurts. The other key thing to remember is that pain begets sleeplessness, and sleeplessness worsens anxiety and pain. They coexist. Take last night for instance. I didn’t fall asleep until 2 am because of aching in my shoulder, and I woke up three hours later because of aching in my shoulder. Meaning I slept but I’m sleepy. And if I’m sleepy AND sore, I’m likely going to oversleep once I’m able to go nighty-night.

Engaging in other activities such as reading, listening to music, or chatting with friends can take one’s mind off their issues, for a while. And that is a good thing, a great thing. However, it doesn’t eradicate one’s autoimmune disease. Or at least I’ve never heard of it doing so. If anyone has had that happen miraculously, I’d love to hear about it, seriously.

And trust me, we do worry about what is happening to us. But if we went to the doctor for every single thing, we wouldn’t have any money. Nada. Medical treatment for autoimmune disease is high, if not astronomical, at times. Therefore, we often pick and choose what’s worth riding out at home and what merits a trip to an ER.

Reading up on whatever is affecting our friend or loved one may do a world of good. The more knowledgeable one becomes the more empathy and positive encouragement one can give.

Your turn:

On Chronic Illness and Fitting In*

If you have a chronic illness, how has it affected your personal relationships and/or employment? Have your friends and colleagues been supportive of you during your illness? How can we in general create more awareness and empathy in our inner circles and places of employment for those who deal with chronic illnesses and/or diseases?