Well, No More Palliative…

And I’m more than bummed in some ways, but in other ways, I’m really OK with it.  But, considering where I live, and my experiences with the medical folks here, it’s not that surprising that it’s been frustrating.  It’s been 16 days since the nurse was here to meet with me for being on palliative.  I was told that the chaplain and social worker would contact me, to set up a time to come and meet with me as well.  I haven’t heard from anyone.   When I called the nurse today, and asked to be taken off of the list, she asked if something had happened, and I basically said “Yeah- nothing!”.   She told me people had been sick.  Had I known that (COMMUNICATION), I would have understood.  Why can’t someone just let a person know that they weren’t forgotten, and someone would be in touch as soon as they could.  I can understand THAT.  Even a 15 second e-mail… that would have been enough.  I could have sent my well-wishes for the sick staff  in a reply.

At the only meeting, I was basically told that there were much sicker patients than myself, and what did I want from palliative- which sounded like I didn’t belong.  The next day on the phone, it didn’t seem to be an issue, so I didn’t bring it up.   I know there are sicker people out there- I used to take care of them !   But this isn’t a competition !   When I mentioned knowing that they had sicker patients, she said that she didn’t mean it that way… OK. that’s fine.  Good to know.   *thumbs up*

Ended up OK- should I decide later on that I want to try palliative again.  But for now, I’m on my own. Again… or is it still?   I see the gallbladder surgeon on Friday (with a completely different healthcare system in town)… once the gallbladder is out, my days with doctors will be few and far between.   Seems much safer like that, and if not safer, at least much less frustrating.

“You Look OK… “

Well, that’s great !  I’m glad I don’t look like I feel...  I’d have to worry about the dogs mistaking me for a fire  hydrant or other excretory depository.

I’m not sure what THIS looks like: 
– autonomic dysfunction: inconsistent regulation of blood pressure, heart rate, temperature
– diabetes w/complications on insulin
– degenerative joint disease (with one shoulder now having symptoms, both shoulders, both hips, and both knees involved- and no “elective” replacement surgeries because of my history of pulmonary emboli).
– degenerative disc disease, from cervical spine to sacral spine (or neck to butt)
– severe fibromyalgia
– carpal tunnel
– TMJ
– peripheral neuropathy (progressive sensory, diabetic amyotrophy)
– nocturnal epilepsy
– neurocardiogenic syncope/POTS (related to autonomic dysfunction/dysautonomia)
– GERD (fairly severe)
– epigastric hernia (vs. ventral- still getting worked up)
– sleep apnea
– diabetic nerve pain (feels like thighs are on fire, or hot needles in feet)
– defeated patient with little hope of getting anything addressed without some sort of support.

And I’m not sure how ‘visible’ my history is, either:
–  APL (acute promyelocytic leukemia)
– acute, subacute, and chronic pulmonary emboli in all three lobes of my right lung and           right pulmonary artery
–  multiple concussions
–  mild stroke
–  TIAs
–  falls
–  hydration issues
–  kidney injury (related to dehydration)
–  pyelonephritis
–  sepsis (r/t pyelonephritis, cancer, and post knee replacement UTI)
–  and I’m sure things I’m forgetting, including several surgeries.

Now add a doctor for nearly each of those, who don’t talk to each other.   I’m supposed to manage it all, AND manage the communication (or lack thereof) between doctors.   BTDT, and it ain’t working !   My job is to be a compliant patient.  But how can I be compliant when decisions are being made without any input from myself, and the doctors not communicating with each other before ragging on me?  I get to be a participant in my own life !!   If not, I can’t work with that physician/NP/PA/XYZ.   I can’t trust anybody who won’t hear MY concerns.   The first part of assessment is focusing on the issue at hand- and that includes patient concerns.  LISTEN- it’s cheap and used to be fairly standard.

Otherwise, if I’m not a part of my own healthcare, why should I go see those who have ME figured out without my participation?