About JillinoisRN

A disabled RN who is still trying to find ways to help people. I've got a lot of interests, and a lot of things I'd like to convey to people.... whether they want to 'hear' them remains to be seen :)

Single People with Dead Family Must Be Meant to Die, Too

Because getting help for medical issues in RockTurd, IL is like pulling teeth from a parasite.  Since January of this year (2018), I’ve had symptomatic gallstones.  Now, they’re VERY symptomatic.  During the workup for the gallstones, it was noted that my kidney and liver function tests were off.  Got those figured out (not an issue for surgery), and then I broke my ankle.  Was having some issues getting enough fluids in (and was putting a tube into my own nose for fluids), and wanted some help with that from the GI folks… but I never got to tell the NP why I was there.  Gastroenterology Nurse Practitioner (of all of 5 years- barely even a nurse, and didn’t look like any actual time BEING a ‘real’ nurse) ordered tests irrelevant to why I was there- but went OFF on me (like needed medication adjusted) after I apologized TO HER for sounding abrupt.  The tests felt punitive, and because it’s MY body, and I knew WHY I was there, and can’t do any of the follow-up (transportation and physical limitation issues), I won’t get the tests done.  Period.  But my reasons were seen as irrelevant.  And the facility had nothing to say about how I was treated, and seems to think the angry NP’s shit doesn’t stink, because they still want tests I’d had done in 2016, with no change in THOSE symptoms redone.  Nope.  Not until you hear me out- but since I won’t ever go back there, won’t happen.

Well, then the OSF surgeon decides HE won’t do anything until I get the GI doc’s tests done- and CANCELS my appointment so I could show him what looked like an epigastric hernia.  Didn’t want to hear from me at all.  SO, I- the actual patient- was irrelevant to my own healthcare here in ROCKTURD, IL.   THANKS so much, Dr. Barteau.   Because you disregarded me in my own healthcare, I was able to find someone who DID listen, and is willing to talk to me- not AT me about another doctor’s orders for tests that were already done.  But you wouldn’t let me tell you because YOU cancelled my appointment that I’d waited WEEKS to get.

I opted to go on Palliative care at this point- if I can’t get real help, then let’s focus on symptom management and stress relief- and then THEY don’t follow up when they KNEW that their staff were sick but didn’t let patients know of any changes in scheduling or when to expect contact.  Really?   No communication?  So, again, not relevant to my own healthcare. Not considered at all… not worth an e-mail.

I got a referral to another surgeon with another medical group – and he is SO nice.  He got things all set up, and surgery is scheduled.  I had a ride there. I have someone to pick me up, and get me home, and stay with me (rent-a-nurse, as my family is dead or out of town, and the few friends have lives).  Today, I decided I better be sure I can just be dropped off and picked up – and of COURSE NOT.  I have to have someone who knows nothing about me, being paid to sit in the hospital doing nothing, so the hospital won’t CANCEL THE SURGERY.  The “rules” aren’t for my benefit !  I’ll be laid out on the OR table.  And if something is screwed up, I don’t have anybody alive who’d sue.  So, I’ve got to have surgery alone (essentially), some stranger is more valuable than I am in my own care, and random rules don’t address individual situations.  It would be much safer if I stayed overnight if they’re that concerned.  But that would cost the hospital more money.  Can’t have that.

So, I’m the only single, family-less person with friends who have lives in the entire city?  I highly doubt it !   SO how many people die here each year because they simply get tired of fighting to be part of their own health care?   I don’t see the value in pursuing any future medical care here. And I can’t move somewhere with good healthcare (again, physical limitations). So, I’m done.  If something happens to mess up this surgery, I will die when my gallbladder gets so irritated it blows up (like appendices do).  I’ll get peritonitis, and after a few horrible days, I’ll be dead- and that sounds SO much less stressful.

What a Difference the RIGHT Doctor Makes..,

I haven’t written many blogs on the totality of what has gone on this year with the physical challenges, and trying numerous times to get some  help.   Today, I saw a surgeon who is compassionate, kind, and smart.  He’s a military doc, so I’m guessing he’s had to do a LOT of really intense things- my gallbladder will likely be like popping a zit compared to putting a blown up soldier together again.  But he made me feel like MY concerns were just as important as anybody else’s.    Surgery is scheduled.  It’s gonna happen.

How this has played out this year:
– late January, I started noticing right upper quadrant pain
– early February, getting worse- but now kidney function labs look pretty bad, so off of “good” reflux med, and the battle to stay hydrated got much worse.
– went to see surgeon, who said gallbladder needed to come out.
– went to GI appt. to see if I could get some help with fluids (i.e. a j-tube) to SAVE MY KIDNEY FUNCTION – not an easy way to get drunk (I don’t drink alcohol).   That bitch of a nurse practitioner lit into me like I was the last living Nazi, and ordered tests for something I’d had tested, and was not the reason I was there- it all felt very punitive.
– FINALLY saw nephrologist (order got lost, but when I asked about it, I was told they’d call me… well, not if they don’t have the order.
– got news that kidney issues were related to dehydration from nausea (gallbladder). He gave me instructions on what to do with meds if I couldn’t keep enough fluid on board, and told me to keep putting the nasal tube into my stomach to get fluids in, however it had to happen.
– got OK to go back on good reflux med.  Easier to get fluids in.  Pretty much down to liquids and foods with no fat and little protein.
– broke ankle June 2
– 7 weeks of ankle splint, and still not back to normal.
– made appt to go see surgeon again, who (3 hours before the appt I’d waited weeks to get)  wouldn’t see me until I got the UNNEEDED GI tests done- and wouldn’t even let me come to the appointment to talk to him AND show him a split in my abdominal muscles with a bulge that he might want to see before surgery.   Would. Not. Even. Let. Me. Come. To. My. Appointment.    (Thanks, Dr. Barteau- but really, THANK YOU- I found a doctor who is willing to include me as part of my own healthcare).
– got referral for palliative care to focus on symptoms, and quit trying to get blood from a medically deficient turnip.  Nurse came out.  Never heard from anybody else. Called to cancel their “services”, and was told that they’d had sick staff.  Had I been COMMUNICATED with, I would have been accommodating.  But nobody let me know why I’d met with palliative silence.
– to ER for second time with blinding left sided abdominal pain; name of surgeon given to me from THEIR medical group.
– my primary doc moved out of town, so started with a new PCP.

And that brought me to today.  He couldn’t have been more kind.  Surgery is scheduled, and the abdominal and pelvic CT w/w-o contrast was done, for a structural study that showed that the crap the GI folks were looking for was irrelevant.  There are no structural issues making surgery risky.  I understand the first surgeon wanting more information- but why want tests that were irrelevant to my gallbladder?  And why was MY information about MY body ignored?

At least now, I can see an end in site to the abdominal pain.  I’ll have a month to get ready (including a trip to the apple orchard).   Maybe things will get better.

 

 

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?

 

 

 

Relief … Date Set for Palliative Care Assessment

It’s amazing the amount of power that ‘choice’ offers.  For decades, I’ve been fighting every medical diagnosis and disaster, and in the end, that is what my life has become. I just wait for the next shoe to drop…and that is exhausting.   With the chaos of trying to get my gallbladder removed, and the negligent degree to which the doctors didn’t hear a word I said (or cancelled an appointment, so I couldn’t tell them), I’m done dealing with “professionals” who don’t have the basic assessment skill of simply listening.  On August 6th, I’ll officially have more options.  With “palliative” listed, it will help so I’m not seen as non-compliant.  The armpit of medical science that is this town will have far less control over what does or does NOT happen to this body.  There’s a person attached to it that is tired of being irrelevant in my own care.

With palliative, I can get things diagnosed and/or treated- or not.  I don’t ever have to have tests for more bad news.  It’s unlikely I’d go through with much in the way of treatment with no dad in the picture.  So why spend any more time wondering, worrying, and waiting?  It doesn’t make sense anymore.  And with that comes a bit of calm.   I’ve also tried some different types of medical cannabis, which is acceptable in palliative care.   If nothing else, I can get some sleep at night.   But knowing that I can ditch a bunch of doctors, and live life on MY terms is empowering, and gives me a bit of hope in a city where ‘hope’ and ‘medical care’ are seldom associated.

Eager to Meet With Palliative Care Folks

Surrender… it’s really not the same as giving up.   I don’t want any more diagnoses, specialists, medications, tests, procedures, etc.   It just isn’t important anymore.  I don’t have any need to push myself beyond the limits of “quality vs. quantity”, just to have a longer shelf life.  There are so many things worse than dying (and I’m not dying).   I need to be able to focus on ANYTHING that isn’t related to my health.   Especially when the doctors don’t want to hear what is concerning ME about any symptoms.  Why should I trust anyone who won’t include me in my own care?   I just want to be heard.  That’s it.  To feel like my perspective on MY LIFE matters.  And here, it mostly doesn’t with the doctors I’ve seen this year.   I’ll be glad to see 2019.  Not sure I could take another 2018.

Doctors don’t get to dictate my life.  I understand that they have to cover their butts (and that is what it is, as compassion is never “expected”; I go into most appointments in fear here).   I understand that they want various tests, and being an RN for 33 years, understand the rationale).  That is their ‘go to’ response to things- without input from the patient (me)  SO often recently.  It’s not about the entire person, or even any other body part than what they are paid to address.  I’m not a collection of parts… I am a whole organism, and when I am not allowed to come into an appointment I scheduled to show the doc something that COULD kill me quite easily if he doesn’t know about it, I don’t trust that “medical care provider”.  There is no way I can trust that type of “doctor”.  Mostly, it was a devastating blow, in my hopes to get some relief from the gallstones.  But I’m done. It’s time to focus on my emotional well-being…. and dismissive, patient-deaf doctors (and one nurse practitioner in the GI practice) are NEVER going to be part of that.  This year has shown me that over and over.  I won’t be their victim.

I’m not going to keep wasting time on a losing battle- and it’s not with my body as much as it is the “caliber” of physician an ‘armpit city’ attracts .   Now, there are some great folks here… but it takes a lot more time to find them than it should.  They shouldn’t be the exception. So, I’m expecting a call from the Palliative Care team associated with my doctor’s medical group (couldn’t get in to the one associated with the hospital I prefer, but can transfer later if I want to; my former high school classmate and primary doc is the medical director there).  I want to focus on what’s left that is good.  I want to focus on the living part of life- and not the constant troubleshooting, tests, specialists out the wazoo, etc.   I want to focus on symptom management and stress relief.  I NEED that.   And maybe if I have someone helping out with communication, I will once again be part of my own healthcare equation in the eyes of the tunnel-visioned doctors here.  I need that, too.  Palliative care is perfect… I’m not terminal, and palliative looks at anyone with chronic life-altering illnesses, to help improve quality of life.

The medical cannabis is a big part of all of this.  Without ‘stoner’ psychoactive effects (because of the dosing), the positive effects have gone beyond my initial hopes.  It has helped things I didn’t know it would (and most of that is because of the CBD, and not the THC- though they do work well together).  CBD is the ‘antidote’ for too much THC.   The few times I’ve overshot the dose, I’ve felt horrible in that “wonky head” feeling, and have no idea how that could ever be “recreational” or fun.  I hated it.  But the health benefits from the medical cannabis have been so worth it.   I never thought this ol’ detox RN would ever even try THC… but without having to smoke it, it has been the best option for numerous chronic disorders.   And, I’ve been able to get off of many medications that were NOT making a positive difference, or had such negative side effects.

So how is this related to surrender?   I’m doing what feels best given my circumstances, and I’m picking my battles according to what I NEED- not what a doctor without all of the information dictates.  I have no interest in dying- but I also know that being dependent and in need of 24/7 care is not something I’d agree to very easily, if at all.  I’ve worked in nursing homes, head injury rehab, and other “institutional residential” types of healthcare- and it’s not a life.  It’s giving in to the “life” so many others determine for the patient/client/resident.  Which means I’m irrelevant again.  “Flip, flop, fold, feed, and fluff”… that group of patients who can do nothing for themselves.  I loved being able to care for them, but  I don’t want to go out that way.  So, surrender, since making the decision to go on palliative care feels right.  It’s the most at peace I’ve been in a long time.  Grieving my dad’s death is still a complicating and major factor in my life, but I don’t have to ever get bad news from procedures I don’t want, and distances I can’t travel (making me “non-compliant” to those who don’t see the whole picture).   This is OK.  In fact, it’s good !   I’ll still take care of the various daily tasks that I have to in order to preserve what I have left  (or try to), like blood sugar testing, insulin, etc…. but I will also keep trying to get off of any medications that the medical cannabis allows me to discontinue.

I won’t NOT get temporary, acute things treated (bronchitis, or whatnot).  But no more screening for things that I will not get treated.  Enough is enough.   It’s time to focus on the things that make life worth living, not getting MORE  news that something else is falling apart.  That in and of itself is extremely stressful.  I’m not waiting for anymore shoes to drop.  In my head, I’ll be barefoot. ❤

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 ❤