It’s Tuesday Morning

I was about to write a Facebook post, Facebook being the place I most often share the challenges of navigating benefits systems as someone who is disabled with severe chronic illness. And it occurred to me that perhaps I should be sharing these things more broadly. Many of my friends outside the systems have learned a lot from my sharing and seem to find it valuable. So here’s a bit about my morning:

I’ve been having sleep problems for a couple of months. But last night I took my Ativan, rearranged my bedding, listened to a bit of an audio book, and fell asleep at a reasonable time. I think I slept for about 8 1/2 hours, which was amazing. And I am so glad I had a night of almost reasonable sleep under my belt when I woke up. (Aside from the screaming cat on my chest, which is a whole other issue.)

What’s the current state of Social Security?

I scan the New York Times, and see an article on the current sad state of the Social Security Administration. 1 million disability applications backlogged. 36 minute hold times on phone calls. Budget chaos. I share the article in some key places on social media. I’m on SSDI, and don’t usually have problems. But I’m also coming up on my third Continuing Disability Review (CDR) and wondering when it will actually happen. The status of CDRs was not discussed in the article.

Will my medication be ready at the pharmacy when my shopper goes this afternoon?

The thing I needed to do was call my pharmacy. There’s a national shortage of one of my medications, and my refill is overdue. I have spent the last week and a half trying to track it and my refills down. Here’s the back story:

My pharmacy did not contact me to tell me there was a problem with my RX. I found out I had a problem when one of my helpers commented back on 11/24 that I was getting low. I logged into my prescription portal to discover that my refill was supposed to have happened on the 11th but was delayed.

I called the pharmacy and was told they could not get it, and I should call around to other pharmacies and move my prescription to whoever could get it. So I started calling pharmacies and asking if they had it, if they could get it, and who their supplier was. I found that my neighborhood pharmacy had 12 days of it in stock, but could not get more. So i called the on-call service for my doctor’s office and asked the doctor on call to put in a prescription for that 12 days. He did.

I begin rationing my medication, dropping one dose a day out of four.

But a few days later I got a text from my regular pharmacy telling my my prescription would be ready on the 4th. I was skeptical. So I called the pharmacy to confirm. I was told yes, it was fine, and it would be ready.

I met with my doctor that week and gave her a heads up that there was a problem. There is no other medication that does what that medication does, so if we can’t get it we’d have to pursue something entirely different, which has its own access problems, as it has to be compounded or gotten from another country.

On 12/1 I called the pharmacy again. I said hey, I’m aware there’s this shortage. I was told you couldn’t get it, now you say I’ll have it next week. I just want to confirm again that I really will be able to pick it up next week. Yes, I was told. No problems. It will be ready on 12/4.

12/4 was yesterday. There was no text from the pharmacy. The prescription portal says that it is in the process of being filled and will be available soon.

So now it is this morning. And today is Tuesday. And Tuesday is the day that my friend does my grocery shopping and picks up my prescriptions. I send her my list and instructions in the early afternoon, so I call the pharmacy to find out what’s going on.

The medication is not available. It is back ordered. There is no expected date when it will be available. The shortage is very real.

In my discussion with my pharmacist I shared my saga of phone calls. Which is when I find out that those calls last week were answered by a corporate office, and not the store. And apparently those folks can’t see the same information. He offers some compassion for the situation and tries getting creative about problem solving.

He says that the brand name version of the medication shows in his system as available to order. My insurance company might not like it. But there’s a chance we could resolve it with a new prescription from my doctor for the name brand. The insurance is likely to deny it, and he can try and override or two. If that doesn’t work, he would then send paperwork to my doctor for a prior authorization. But then I might have to spend some time calling the insurance company in order to get them to expedite the review process. He encourages me to get this moving as soon as possible, and a new RX to him later this morning would be best.

I have 19 days worth of medication left.

I call the doctor’s office. They put it in the queue to be managed, but won’t commit to doing it today.

And then, realizing the folks there who would be handling this are not my actual doctor, but staff I don’t know, I send an additional clarifying message through the portal. Now I wait, and start follow up calls tomorrow. But at least I know what to put on the grocery list.

My friend is here to help with the morning routine, and brings me coffee.

Thank goodness for my friends. I drink it hotter than usual, in search of fortification. My heart rate is too high from making phone calls. I rant. We chat.

A friend sends me a text offering to bring me dinner. a godsend.

I turn off my DND and turn on my ringer.

Do I still have Medicaid?

Throughout this saga, I check my email. I have a message from the woman at my local independence center who handles the financial side of my home care. She sends me a pdf of a letter from my Long Term Care insurance company that I need to renew my Medicaid immediately if I want continued services.

I have not received any recertification paperwork from my Department of Social Services which handles my recertification process.

I look through my notes to find my case manager’s number. I call DSS and get a recording that her mailbox no longer accepts voicemail, and I am immediately disconnected.

I Google my DSS and get the phone number for the Medicaid department. I leave a voicemail.

I get a call back that my Medicaid is fine until the end of February. My insurance company is sending panic notices for no reason. Also, my case worker has been out for a long time and they aren’t sure if she’s coming back.

There’s another vet bill.

Also in my email was an invoice for another $100 from a test we did last week for my elderly cat. I just paid the last bill for $350 on Friday. I promptly call and put it on my credit card. I still haven’t reached my GoFundMe goal from July, and care for my senior pets continues to require testing and medication. I am so grateful for the incredible veterinary care I have. But the money is real.

I’ve shared in some circles that my beloved dog died in late October. That’s a huge change and big grief that I haven’t spoken about publicly yet. But I still have a cat with kidney disease and high blood pressure who’s anemic and losing a lot of weight and constantly freezing cold. And I still don’t have a roommate to help me balance my budget.

My actual plans?

Right. That’s what I hoped to work on today. Advertising again in the hopes of finding a COVID cautious roommate. And advertising again for a second paid personal assistant. Both are processes I’ve been in for 15 months with no success.

But I’m exhausted now. I should eat food. Take my meds. Finish the grocery list. Take a nap. And those other things will wait until tomorrow.

I’m grateful dinner will come with no work on my part.

Meanwhile another disabled friend messages me. “How’s it going with you and Sadie?” “Today is a total shit show so far.” “Tell me about it, but only if you want to.”