I can’t believe I haven’t blogged in a month!
It’s been QUITE a month. I thought that by now I’d be writing about my adorable tutoring students, and how every day I could see in their happy, fascinated faces that I’d made a REAL DIFFERENCE in their little reading lives.
Unfortunately, Health ran interference on my Life, and Health is a hog about always taking center stage.
TUTORING
I realized a few weeks into the Americorps tutoring job that I probably didn’t have the stamina, but I was still hopeful that I’d be able to increase my strength day by day.
Then I fell last Saturday. I was in the basement, I washed my hands (thereby getting a bit of water on the concrete floor) then turned to walk away and fell HARD right on my face. My nose was bloody, my tooth was chipped, and my chest felt as though someone with huge boots had kicked me, HARD.
Getting up was hard, so hard, but I did it. I got upstairs and cleaned myself up as well as I could, waited for Andy to get home from running errands, and decided to try to ‘sleep it off’ because I just felt so wiped out after my crawl upstairs.
The next day I hurt just as bad, so we went off to the ER so I could make certain that I hadn’t damaged my spine or any of my cancer-affected bones, and we learned that I had definitely bruised – might have broken (although it’s hard to tell…) – a couple of ribs. They offered me some pain relief, but I told them in all honesty that I was already taking pain meds for my back and Tylenol was probably the best thing for the swelling that was causing the pain.
Upon returning home, and taking time for some careful consideration, I finally had to admit to myself that I wouldn’t be able to do the duties of my job for the next few weeks, and I couldn’t guarantee that I’d be able to do the work even AFTER those weeks had passed. So I had to make the very, very difficult decision to back out of the Ameritrade tutoring job, which breaks my heart a little. So many broken things all over the place.
PAIN CENTER
Tuesday I had a first visit with a pain clinic, which went – oddly. I’m still trying to work out exactly what happened, here’s how I wrote about it on FaceBook:
My first pain management appt didn’t go well. Apparently I somehow angered the CNP, I’m still trying to figure out how.
One minute she was staring me down (unblinking, very odd) then when I mentioned that it made me uncomfortable, she looked away and said, ‘Well, since I’m not allowed to LOOK at YOU..!’ willfully misunderstanding what I was saying. The appointment ended with her telling me that it was “a privilege for me to be seen at the pain center,” and she left abruptly.
I had a meeting with another nurse and the clinic manager, they’re going to try to hook me up with a different person – a doctor – for a future appointment. In the mean time I’m reliant on my PCP for my pain meds.
Maybe it’s better to just keep it that way, I got an odd vibe from this pain management center. I don’t have a camera or anything, I can’t ‘rewatch’ the interaction – I’m still trying to figure out what I did, or didn’t do, that seemed to anger the CNP so much.
I walked away with such an odd feeling about the pain center, I’d decided by the time I got to my car not to pursue treatment there.
Yesterday I met with my therapist, who deals with cancer patients and is affiliated with my cancer center. She was able to pull up the notes from the CNP in my chart, (what was written after our very brief appointment) and I was startled by them.
In the comments I am “She”
She notes that she feels forced to come the [sic] pain center and has no other choice according to her oncologist.* . She also notes that OxyContin is really an “8 hour medication not a 12 hr”*^, she also notes that she will not wean off of her opiods because she has tried and the pain was too excruciating,** she has receiving [sic] medication from her oncology provider at this time. initial consultation did not go well. The patient reports to the provider that she was offended because the provider was “staring intently” while listening,^ an apology was provided to the patient^^ and she asked for the clinic manager. The visit has since ended abruptly. No charge from the provider at this time as this is not a complete visit.
It continues ominously
Previous to the visit her oncology notes were reviewed – it appears that they have tried to reduce her use of opiods as her oncology diagnosis is in remission.**
Addendum – patients case will be brought to case review for evaluation, as the clinic manager has discussed with the patient, no prescriptions will be provided to her from the pain center. No UDT was taken today. Clinic manager aware and involved.
_* This is not true, I was the person asking for the appointment, I asked my oncologist AND my Primary Care Physician for a referral to visit the pain clinic. This is a lie.
*^Articles re: 12-hr/8-hr OxyContin problem, it’s a real thing, and I discussed with her that my husband had taken Oxy for over 12 years and this was something he had researched.
LA Times, May 5, 2016
Practical Pain Management, July 2016
** I started at 90mg of OxyContin/day in January, and twice I’ve been weaned down successfully (once to 60mg/day, then to 40mg/day) and with my full cooperation. Recently, my doctor had me step down from 40mg/day to 20mg/day, which I blogged about, and that was very difficult. My doctor and I decided that it was better to return me to the 40mg/day after a two week trial at a lower dose.
^ It was very odd. The CNP just sat and stared at me for a considerable length of time, I’d never had a caregiver or anyone stare at me so intently.
^^ It wasn’t.
Now, I’m probably being overly cautious, but I want to get this in print because I feel like the end of her comments on our visit sound as though she’s planning on taking this to whatever committee addresses these things, and in my worst nightmares she might try to get me declared a pill-seeker.
All she had to do was look at my file and see the scans of my cracked vertebrae to understand the need for ongoing pain relief. Oy vey.
The imperiousness of this nurse makes me gag. Even though I am a retired RN, I still worried about being labeled a pill seeker. Is this the only clinic available? Maybe staying with your other docs ordering meds is best.
Pain is emotionally and physically exhausting. And then you get Ms Stick-Up-My-Butt who belittles you when you are vulnerable. What an awful experience but you were amazing to ask to speak to the clinic manager. Great job advocating for yourself! I would have just left in tears so I think you’re awesome!!
Good god. Persevere. You are in the right here. But you know that.
I’m flabbergasted by the discrepancies between how you experienced the appointment and what the nurse wrote down. You made the right decision to write it all down. I’m not qualified to make a judgment on this incident, but my gut feeling is that you should talk to someone who is and whom you trust. Sending you virtual hugs!
Nevertheless, she persisted. You go, girl! This reminds me of “sessions” with “professionals” when I was trying to figure out how to bring my husband home to die—which was all he wanted—when he was at the end of his battle with a Multiple Myeloma. So-called professionals insisted I demonstrate, in front of my teen-aged daughters—that I knew how to handle him (change sheets, turn him, etc), with no support or education at all. He had a seizure, was placed into “hospice”, and died within 48 hours. Some “professionals” have too many issues of their own!
Oh my god, this just makes me furious. The number one job is to make the patient comfortable, and then to make the family comfortable in their roles. It sounds like your professionals were expert in making you feel small and worthless, and in screwing up an already bad situation.
What.a.pill! I love the way she wrote down her mis-observations and am so happy you wrote down yours. I would suggest you contact her manager asking that she attach your notes to the report, before it goes into the review committee. She is not well suited to her job.
I’ve made a habit of recording interactions with healthcare professionals on my phone, mainly in case I forget something they say. Lying seems to be more acceptable in today’s political climate. As a healthcare professional I will speculate that you’re not the first patient she’s behaved inappropriately with. I’m sorry this happened to you. You deserve better!
Just awful – so sorry you have to go through all this in addition to the physical stuff! I agree (though totally unqualified) with the person above who suggested that you try to have your notes appended to your record. At least your therapist has a record of your report on the meeting with the CNP??
As you clearly understand, opioids have their dangers; but it seems as though a lot of medical people have moved *way* too far to the restrictive side. As a result, people are suffering unnecessarily.
Breathing in, breathing out, moving forward, which you are beyond a grand master (mistress?) of.
Have missed your updates. Hoping things are well. I have appreciated your
sharing of strength and hope.
Sending positive thoughts and good vibes.