I was scheduled to have Remicade today. And just in time, as my new rheumatoid issue has made my joints HAYWIRE.
But, Reilly was diagnosed with Strep Throat yesterday, and it just isn't 'safe' for me to have my immune system destroyed while someone in my house has a highly contagious infection.
So, a few minutes ago I called Miracle Nurse, and told her that I would NOT be coming today, and she said she kinda knew, because the other nurse, Annie Oakley, conferred with her when I called yesterday, but ALSO,
(why couldn't they have told me this YESTERDAY?),
my free Remicade has run out and I can't have anymore until I submit the financial needs paperwork, nor can I set up another appointment.
I kindly (it was soooooo hard to be kind) said that I have all the paperwork here and ready, and I will get it into the mail to her ASAP.
And now I must wait for her to call me when I can have an appointment.
I feel like the foreboding Aunt Meredith when dealing with her third favorite nephew, my pirate son - I can see the future.
It will probably be another month or so before I will get another treatment.
Which THEN means, that if we go beyond eight weeks, I will have to go back and be 'reloaded' from 0, 2, 4, 4, 4.....
That means I will have to have a 'loading' dose (the '0' dose), and then another infusion two weeks later ('2') and then another infusion four weeks after that, and then I am back on my regular schedule.
Hopefully and prayerfully church will kick in the nine hundred bucks for three extra treatments, OR I will have Mediciad by then OR my husband will have a job with W-2s and insurance by then.
And even though I will try my darndest to make sure this does NOT happen, I will probably start going downhill into a flaming state of 'flare' within the next two weeks.
I understand that I have to abide by the rules of the free $17,000 (times 12 for each month) Remicade, but here's what makes me REALLY mad.
TWO infusions ago, which would be, EIGHT WEEKS ago, the patient, meaning ME!, mentioned to Sue that I thought I was close to my annual renewal period for the 'free' Remicade.
She said, she hadn't received any paperwork related to that, so I didn't need to worry about it.
So I didn't.
LAST infusion, which would have been FOUR weeks ago, I told Sue that I had received the renewal paperwork the day BEFORE, and that I would start gathering all my info together to send it in.
And she told me (AND I QUOTE!) "Just bring it to your next infusion, and that way we can keep it all together with the paperwork that I have to do and the signatures needed by the doc and the finance manager. Since we haven't received a notification yet, there shouldn't be any problems."
To wit I said, Okay.
So, I had all the paperwork pulled and ready to take with me to the treatment I was supposed to have TODAY...I had done what I had been told to do.
No one called me telling me to accelerate it or anything.
So, NOW, I have to go somewhere and PAY to have it all copied, then I'll have to PAY to have it mailed PRIORITY/INSURED/URGENT whatever, because it's not like I can just drop it off at my doc's office - it is 40 miles away.
And THEN, Lord only knows how much time it will take for the paperwork to go through the office and get all the info that is needed to finish the 'deal'.
Compare this to say, not getting a timely refill of your Vicodin, or your Xanax.
Yeah, if only it were THAT painfully simple.