#insertcaffeine disability

[jenthebug]

I have a phone interview to get food stamps scheduled for the same time my son has a doctor appointment. I got a text to call and reschedule if the time doesn’t work for me. I’ve been on the phone for an hour already, on hold.

1. How do working people do this?

2. This hold music is awful.

3. Why do I need an interview when I explained everything on the application?

I’ll jump through the hoops, don’t get me wrong. We need this money. I’ll just be a little salty about it.

[jenthebug]

Just now got home from a Christmas themed pop up bar.

Husband wanted to go because the bar was at the site of his favorite jazz bar, which has closed. :(

The old bar, with sheet music and liner notes from the house band, is still there.

Anyway, we had to buy tickets for a 90 minute visit. It was more of a party than a trip to the bar. We had a party hostess, an elf named Peppermint; she led games and a sing along.

I tipped her via Venmo. I couldn’t help but be nosy and cruise through her transactions. She takes voice lessons (and they must be helpful, she’s got pipes!). She has roommates. She babysits. I hope she does well in life.

Husband and I got a bunch of Christmas decoration ideas. We need wall art, garlands, and ornaments. Next year we are decorating for Christmas and the decorations aren’t coming down until after the Stock Show.

Had a bit of Serious Time, too. He’s optimistic about my disability (new role at home/less money), which makes me feel better. He’s glad there will be healthier food at home. I’m not super stoked about cooking it all, but, crockpot.

Anyway, it’s past my bedtime and that was a splurge but I’m glad I went. Hanging out with Husband is so fun.

[jenthebug]

Oncologist appointment update:

I told her that I wanted to go on disability in January. I told her, truthfully, that all I can do on work days is rest until bedtime. I told her that I'm depressed and don't want to live like this. I told her that I can't keep up with my ADLs (like showers and doing dishes) on work days, and I can't follow up with my primary care doctor because I don't have the PTO.

"Well let's get you feeling better so you don't have to go on disability!"

^ that's what that felt like

I get it. She wants me to feel better. We're going to try tweaking my meds (again). Because "We can't tell whether your fatigue is caused by the cancer or the treatment until we try this." (Implying that she won't sign off on it unless it's cancer related)

She asked me if I was this fatigued before cancer. LOL no.

Even hearing, "If you are still feeling bad in January, I'll sign off on it" would have been helpful.

Really, though?

I want to hear: You've had metastatic breast cancer for four years and you've worked for most of it. It's obvious that you are exhausted and depressed and what you're doing isn't sustainable. You deserve rest. I will make this easy for you.

[jenthebug]

First, a selfie that nobody asked for because I actually showered and wore makeup today 🤩

Now then. Shit’s getting REAL. I applied for debt consolidation (got a five year plan, which will be nice if I live that long), and applied for Social Security (which I’ll hear about later, after I mail some stuff in).

Also took Jay Christmas shopping, did some housework, and played some Mario Kart with Twin Bro, Little Bro, and Princesa (it was adorable).

[jenthebug]

Disability update: we can probably afford it at the start of the year.

There is light at the end of the tunnel!

Holy shit. I need to start cutting my monthly budget and saving now. I'm about to get a lot poorer and it's about to be worth it.

I get REST.

I just have to keep going through the end of the year and then I get to fucking rest. And take care of myself like it's my job.

[jenthebug]

Oh, *that's* why I'm on disability

Most days, from the start of the year until today, have been good days (minus a few for another cold >_<). I've been at my baseline fatigue level (4/10, avoiding high energy tasks, doing everything else tired), being productive around the house.

That, combined with my lack of income (still waiting on disability), made me think, well wtf, why don't I just go back to work if I'm doing so okay?

Then today happened. 6/10 fatigue all day (low energy tasks only, and only the necessary ones; cooking is hard, some foods may be hard to eat). Very little work got done. I've been brain foggy all day, forgetting my tea and my water and words.

Almost let the cat out. He was walking toward the back door like the dog does, so I said, "Soba, want out?" and reached for the door.

I wish you could have seen the look he gave me. If he could have said "Dafuq?" he totally would have.

So I actually had a conscious thought. Soba = inside cat. Do not let out. "OH! Sorry Soba, that's not what I meant to say." And then he went downstairs on his merry way.

But yeah! Today has been awful and unproductive and brain foggy! Good reminder that I'm actually where I need to be. But damn, I wish days like this didn't happen. (And also that I had an income. Come on money cat.)

[jenthebug]

These good energy days are actually worrying me a bit; if going off my meds makes me feel good enough to do what I need to do (I do it tired, but I do it), then I should postpone disability until I have to go back on the meds.

What if that takes years? The thought of it is making me cry. Probably because it’s Sunday night. It took a good year or two between the time the hip pain doubled me over and the time my doctor found the lump.

I’m so tired. Even on “good” energy days, I’m tired. It’s just that the fatigue doesn’t stop me from doing things on good days.

How much of this is my job’s fault? If I had a better job, would I be more willing to stay? How much of this is me being entitled or spoiled? I certainly see the thought pattern; I’ve worked with cancer for four years already and it has sucked the whole time and I feel like I deserve a break. And is any of this me legit needing to be at home?

I almost wish my cancer markers would have gone up so I could get back on the meds and GTFO.

Talking to my oncologist about this is like talking to a brick wall, so I’ll ask my primary in January when I have PTO. Which will postpone disability until February.

I just want to be done.

[jenthebug]

12 more shifts and they’re getting harder by the day.

I fell asleep on the couch at 20:00 last night and it was amazing. Missed football though.

Ultimate Partner isn’t here, and I can’t fault her for that, but I can be annoyed 😒 I’d much rather have her at the desk with me than anyone else.

I wish this was ending differently.

[jenthebug]

It’s Saturday. So why am I up at 0500?

Because I fell asleep on the couch at 2100 last night with no sleep meds or weed on board. Stress is exhausting.

I told Husband my plans for disability: One household project (clean a room, household laundry like sheets or towels, grocery shopping, etc.) per weekday. I work when he works. Of course, cleaning a room won’t take a full 8 hours, because working a full shift isn’t sustainable, but things will get done around the house.

(Obviously this will change as I get sicker, but this is what I can do now)

Also, library trips, walks in parks, and hanging out with friends. And cooking healthy food. I finally have a chance to take care of myself.

I just have to get through this month and get the finances situated.

[jenthebug]

Just dashed my son’s hopes of going to two Thanksgiving dinners.

He wants to go to his Dad’s side of the family’s dinner as well as Husband’s family’s dinner. This is possible for us, but I don’t want to do it.

Why?

Because he’s 16. He should be driving. I told him he could do it next year when he’s driving. We’ve been going back and forth about him driving and now we’re starting to withhold things from him until he drives.

He wants a bank account? He needs a state ID. His learners permit.

He wants two Thanksgiving dinners? He can drive to both.

The more he drives, the less I drive, which is ideal. I’m going on disability next year, and hopefully, he can replace me on our car insurance and drive himself to school.

I hate disappointing him, I hate that driving is necessary, but the truth is, where we are, driving is necessary.

[jenthebug]

A preliminary run of the numbers shows that I'm not able to afford disability, at least not if I put my current amount of pay into the joint account (which is a Good Idea because that amount of pay keeps the house running smoothly).

Shit.

I need to have a conversation with Husband about this; whether it's reasonable, whether it's affordable, whether now is the right time.

I'm feeling good now. I got some rest and did dishes. Resting again because dishes are tiring. If I could rest and putter around the house and do chores, things would get done every day, not just weekends. I could take Jay to school and pick him up on time instead of at 5:00. I could write. I could cook without it ruining an already exhausting day (I really think cooking that chili last night did me in today). I might remember to take out the trash more often.

My hesitations are money, of course, and the fact that I'm fine 3-4 days a week. (Sometimes they're weekend days, but still!) If I can work, I should, because working pays more than disability. But can I really? Consistently? This is the second time I've been sent home from work, and the third time this week I've wanted to call out sick because of fatigue.

I don't know what to do. Another reason to talk to Husband, he has common sense and is a good person to bounce things like this off of.

[jenthebug]

I am turning this disability thing over and over in my mind.

I'll have my LTD. That's half my income.

I can apply for SSDI and should get approved. That would mean Medicare, too (after a 24 month waiting period). And we may qualify for food stamps, too.

I really think we can do this. It'll mean a huge drop in my spending, but I also won't be driving to work or buying lunch at work or ordering out as much since I'll be cooking at home. I won't be using my energy at work.

The next step is meeting with a financial advisor via the EAP at work. Then I can figure out debt consolidation and when to apply for SSDI.

Moving right along like a herd of turtles! 🐢