I Want To Go Home in Thirty-Five

Hey friends whats going on over here? I haven’t written in a while. Things have been going slow and steady I guess. Nothing much to report. I do have a lot to say though today because I’m just fed up with people.

So I saw my rheumatologist on Tuesday of last week. He told me that my inflammation numbers (ESR and CRP) were back up, with the CRP reading 81 (it was at 0.2 in June). So yeah fucked up my shit.

Had my infusion in August, all went well. Wednesday morning I saw the foot dr. Looks like we will have to go back in, re-scope, clean out any additional inflammation and he’s going to repair the outside ligament. The orthotics have helped a lot though so that’s a good thing.

We’re waiting for my inflammation to come back down before we do another surgery though. I thought Dr. A was going to pass out when I told him what it was back up to again.

Anywho, so I spent the next hour or so just kind of driving around. Enjoying being out and in the city but not having to deal with anyone but the traffic. So it was about 9:45 and I pulled into a shopping center. I was going to get some food and then run into the big resale book store we have called Bookman’s. I had to call at 10 to the infusion clinic to let them know to order my meds.

Well I picked up my phone and it was the infusion clinic. They were calling to tell me that they couldn’t see me that morning because my dr’s credentials had expired. When he moved to his new office last year, it was so they could open their own infusion clinic. But, corona. Soooooo they tried to see if my PCP could authorize it but she wasn’t on their list either.

Called my rheumy’s office and was like wtf. She had no idea so she was going to try and get me transferred to a different clinic. I just am at a loss for how this shit has happened again.

I was livid. They called me later that day to schedule an appointment for bloodwork for hepatitis b and c. Then it’ll take another few days for them to get that result, send it to the new clinic, then the new clinic has to submit it to my insurance for prior authorization and then who knows how long after THAT will I get scheduled and actually IN to the clinic to get my infusion.

So I called this morning to see if I could get a sample of the Injectable form. They said they would look into it and hopefully have something by the time I got there in an hour.

Got there, and as I’m walking in, E tells me “we don’t have any of that medication that you asked about, we don’t usually have samples of it”. So I told her “that’s weird because in August, Dr. P told me to request a sample if there was another delay”. He was with a patient at the time I was in there. She started asking me a bunch of questions about my infusion and when it was and whatnot.

So I told her that it was supposed to be Wednesday but they called me that morning, etc. Well then she tells me that the clinic called their office on Thursday. Now, when I talked to the guy at the clinic, he said “we found out yesterday and you were the first of our patients from him that needed to be seen”. Which I GET. They don’t order the medication until the day of your infusion and have it brought in by courier, so that there’s not the possibility of having a medication there and someone just not showing up.

Anyway, so my question is, if they found out Tuesday that Dr. P’s credentials had expired (and I know this is definitely the dr’s job to make sure that doesn’t happen), why didn’t the clinic reach out to him and say, hey you have patients that need to be seen, what are you going to do. Not be like oh we can’t see you, but we’ll let your dr know tomorrow.

So I was disappointed I wasn’t going to get a sample and pissed off after hearing the full story. Both places are to blame. I told them that they don’t realize that they are literally gambling with people’s lives by delaying stuff like this. So I walked out of there in tears because I was pissed.

I sat in the car and cried for a few minutes and the my phone rang. It was Dr. P’s office. It was E and she was like you JUST left, but I actually asked Dr. P and we do have samples! So I just told her I was still in the parking lot lol so she brought it out to me. That brightened my day a bit.

Did some grocery shopping. Came home and made Tacos for dinner. Then this is the exchange that I had with a ‘cousin’. I said mostly what I said above in a status with a picture of the med box I got. Our conversation went as follows.

Judy - The doctor pays the hospital to be contracted if they want their patients to be seen in the infusion center. It is the physicians responsibility to keep up with their credentialing, not the facilities. If patients only knew the amount of patients that go through the clinic there under different physicians they would be amazed. As the med cannot be ordered till the day of the appointment, the dept has no way of knowing whether or not the physician has kept up with their fees for the patient to be seen there.

Steph - Judy, I totally get everything. I understand that there are protocols that need to be followed. I’m just having a woe is me moment. I apologise.

I would have been fine with that no problem. Even though I know how the process works (8 times now), I was like ok sure whatever. It was the next couple of comments that really made me upset though.

Judy - Steph don’t apologize, just put the blame where it needs to be. That clinic busts their ass to take care of patients and they have some of the best nurses. I just don’t like to see anyone trying to blame them for something they have no control over. I understand your in pain, but taking it out on other people is never the answer. I deal with chronic pain also every day. I just keep it to myself.
^^^That last part^^

Steph - I blame both facilities. TMC found out Tuesday. They called me Wednesday morning because I was the first patient they were supposed to see. They didn’t call Dr Posadas Office until Thursday. Dr Posadas should have known that his contract was expiring.
I’m also not about to be blamed for taking my pain out on anyone. I own my pain because it is mine and no one else has to deal with it but me. You should know that as well as I do.
We’re always told to be our own advocate when our care isn’t up to par, but when we do it’s like we’ve bombed the place to get our point across.
When it comes to my life and death, I take fuck ups like this, on both parts, very seriously and you bet I’m going to tell a few people about it.
The gap in June and July came from my drs office staff not sending the proper paperwork when requested and then apparently the only person that handles prior authorization was out for 2 weeks and my paperwork sat on their desk without anyone looking at it.
So whichever way my fingers are pointing, the only ones that are pointing at me are the ones that fucking hurt.

Judy - Steph you must of missed my point where I said they cannot order your medicine till the day of your appointment. So even if they found out on Tuesday your appointment was on Wednesday. The medical field is not easy to work in, people are allowed to take time off. You tell everyone about it, not just a few people, sometimes you just got to give it a break. I do know about dealing with the my pain, because I deal with. I don’t ask for help with it, I don’t ask for money, I DEAL with it. Me and me alone. I am no longer working now, but everyday for god knows how long I got up went to work to take care of me and mine. Pain and all. I’m not trying to be mean or disrespectful, but sometimes we just need to take a step back and put a little faith in things. Especially during this time.

Steph - Judy I didn’t miss anything. I was on it for 6 months. Congratulations on being able to “deal” with your shit alone. I can’t. I don’t have to. If I’m such an inconvenience for you to read, I suggest either turning off my posts or deleting me. I tell everyone everything because they want to know. And if not they can do the same.
I get me not having worked in 5 years thrown in my face all the fucking time. Congratulations on joining that club.

Ugh so there’s that. I just ended up hiding the post and then I said later “I don’t know who else needs to hear this, but never, EVER throw my inability to work in my face like it’s some kind of fucking jackpot I’ve won.”

How fucking dare she. Like does she want a fucking cookie for killing herself and “working through the pain” or wtf ever. Like why is chronic illness a pissing contest. Your pain is worse than mine and you still hold down 4 jobs and raise 16 kids? COOL! I can’t have kids, you gonna throw that in my face too. I just have myself, my husband and animals to take care of.

Like she said, I tell everyone everything, because they ask! But that isn’t one of the things I talk about a lot. But getting that thrown in my face for the last 7 years, especially when EVERYTHING IS FUCKING DOCUMENTED about it, so I’m not making shit up.

OMG ok anyway, I’m over that lol. I hope you all have a good rest of your week.

Last updated September 24, 2020