Going on Palliative Care

And the biggest reason is that I can’t get specialists to listen, and am no longer willing to put this much energy into trying to maintain as much as I can of what I have left that works.   This week, I wasn’t even allowed to come to an appointment with MY concerns,.  I own the body.  I’ve been in it for nearly 55 years.  I get to have a say in my own health.  YOU do not have the final word- ESPECIALLY if you can’t bring yourself to just listen, or LET me come in to my scheduled appointment.  Help me see your view (I understand the surgeon’s need to know more- but it’s not about those two tests that are not needed- they were done, with no current changes in how that is going- there is a diagnosis; what is going on now is different).   That doesn’t seem to be part of medical practice in many of the specialists offices I’ve been in this year alone,  I’m done with the medical shit show in Northern IL.

I’m “complicated” on a good day.  Starting in January of this year, I started having some symptoms suggestive of gallbladder disease.  I got an ultrasound ordered by my primary doc, and yup. Big gallstones, but not inflamed.  OK.  Off to surgeon.  Saw him, then had some stuff come up with my kidneys, and because of nausea, I’d become dehydrated- so had to postpone gallbladder surgery.  Off to GI doc, whose nurse practitioner became absolutely rabid when I APOLOGIZED for coming across bitchy (I felt really lousy that day).  She went off on EVERYTHING I said after that, so I guess she assumed I was there for an old problem and proceeded to order tests already done TWO YEARS ago, for something that hadn’t changed, and it all seemed very punitive.  She didn’t even let me finish. The constant berating shut me down.  She chewed me out for not seeing the nephrology guy, when I’d been told they would call me.  Ended up the order got messed up, so they didn’t know to call- NOT MY FAULT.  Finally got kidney issues figured out after weeks of putting a tube in my own nose into my stomach to help get more fluids in (but not on good reflux meds because of kidney issues, so not flawless).  Then I broke my ankle on June 2nd.  I’m still healing from that.  I’m pretty sure my 5th metatarsal (toe) got whacked pretty well, also.

On Wednesday of this week, I was supposed to go see the surgeon again per MY request.  They called three hours before the appointment to tell me that the surgeon wouldn’t see me until I had the GI tests done.  I’d waited for weeks for that appointment. The nurse wouldn’t even let me explain MY side of things, and that I wanted the appointment to show the doc a possible epigastric hernia in case HE wanted to think for himself and order a test to see what was going on structurally…. nothing down my throat or inside of my stomach has changed, symptom wise, in two years.  A CT could be useful- if that showed something in my stomach, then of course I’d agree to repeat the EGD.  I also can’t do the follow-up that the GI folks wanted before because of transportation issues (my dad died- he was my transportation), so why do it all again, just to not be able to follow-up again?  Makes no sense to me.

I’ve been an RN for 33 years (disabled, but I keep my license and CEUs current).  I’m not stupid. But I am very frustrated.  I  absolutely understand the surgeon wanting to know what he was getting into, but I’d think that actually SEEING what I was talking about at the appointment I’d waited weeks for would have been useful.   I won’t see him again.  I was gutted after that phone call (no pun intended).   I was trying to be responsible by letting him see what was going on.  It hadn’t been as pronounced when I’d seen him before.  While spending weeks mostly in bed with my foot up, I’ve had to get up and down more (bathroom closer  in bedroom vs. living room), and that’s when it really popped up.  It’s been there before- but now it’s just weird.

If I have to fight this hard just to have a physician LISTEN, then I’m done.  I’m not in any shape to move somewhere with better medical care, and I think if I had to leave this house (last part of my parents left), I’d just die anyway.   No more specialists (except one required by Medicare for CPAP supplies). No more procedures. No more consultations.  Only simple lab work.  No more bad news. No more assholes.   No more being berated by unprofessional “professionals”.   No more having to fight to stay as healthy as possible.  I’ll be compliant with what I agree to with the palliative team, but otherwise, the less I have to have anything to do with the medical community in Rockford, IL, the better.

Thank GOD for the nursing care manager at my primary doc’s office.  She has been exceptional when all of this overwhelming stuff just becomes so crazy that I just fall apart. I’m still having issues with grieving my dad’s death.  The health issues, and never knowing what else is falling apart is exhausting.  I’m doing the best I can, but there are a lot of days when I’m really struggling.  Laura has been wonderful.  And she LISTENS.  If I feel heard, I can settle down pretty well.  None of the specialists even seem to think that there might be a lot more going on in someone’s life than the issue they seek help for.

Palliative care focuses on comfort, stress relief, and symptom control.  People don’t have to be terminally ill.  It’s also for life-altering chronic disorders… and I have several.   I can have things fixed if I want to (unlike hospice), but I really don’t see the point.  I don’t want to know if anything new is messed up. No more Pap smears or mammograms- I won’t go through cancer treatment again.    I. Am. Done.   Thankfully, my primary doc and case manager have been amazing.   Everyone in that office has been great. And, the doc is leaving, so will have to see a new one (gotta have a primary doc), but have some continuity going on there, and with the palliative folks getting on board, that should also help with the transition.

NOTE to Doctors who only see one body part:  You are part of the problem for any patient you see- not just me !   You need to talk to patients to get the whole picture before writing them off.  That other doctor whose ‘side’ you cling to has spent 10 minutes with me.  How is that very useful?   If you don’t HEAR patients, what good are you?   How much of your life do you expend just by listening? I’m guessing not much. In the meantime, shutting a patient down matters in every future healthcare decision they make. Nobody wants to put themselves in a painful situation on purpose- and YOU are a painful situation.  And any other medical people who are in contact with actual humans, take the high road if a patient is having a hard time.  It’s not personal (but can get there very quickly).  If you’ve only had 5 years of being an RN, and are a nurse practitioner, that sounds like you have ZIPPO clinical experience with more than one patient’s ‘stuff’ at a time.  It shows.  If you didn’t get laid last night, don’t take it out on me.   If your life sucks, don’t take it out on me.   And don’t blow off the patient’s ENTIRE history.  It is all connected.   Be civil.  Not cruel.

This is what you ignore, just with me:  psoriasis (autoimmune), nocturnal seizures, degenerative disc disease, degenerative joint disease (shoulders, hips, knees), dysautonomia, POTS, diabetes, GERD, history of multiple pulmonary emboli (at one time), gastro-esophageal outlet obstruction, acute kidney injury from dehydration (repeatedly), chronic pain from various causes, arthritis, history of leukemia,  peripheral neuropathy, carpal tunnel (bilateral),  progressive sensory neuropathy, severe heat intolerance, limited mobility, fibromyalgia,  limited ambulatory ‘distance’, bone spurs (neck, shoulders, hips, thoracic spine, lumbar spine), abdominal hernia of some sort (reminds me of ventral hernia I’d seen in the early 90s in a nursing home patient, but it’s a bit higher), sleep apnea,  and I’m sure I’m forgetting something.    It all effects everything else, so even if you don’t have to fix it, you MUST know about it to be prudent (i.e. not negligent).

I have had some great doctors here, but they are few and far between, and they leave.  Nobody wants to stay here if they can get away.   A couple have stayed.  I wonder about them 😉

For patients out there- the doctors work for you. Don’t put up with shoddy “care”.  Move on.   Cut your losses and run.  You deserve better- or at least to be heard.  They get paid for that.  Don’t be their victim.  Survive in a way that works for you ❤