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 :)

To: Shiloh the Miniature Schnauzer

Oh, sweet girl… it’s been over 2 months since I said goodbye to you, and the pain of making that decision has been so hard.  I know it was the best for you, me, and your ‘sister’ Shelby.   But I do miss you. I’m always going to care about you.  And, I’m glad you got a forever family so quickly.  I know it was the best decision, but that doesn’t mean it was (or is) easy, by a long shot.  I. Miss. You.  But, you need more than I have to give, and that hurts to know that my body will get worse, and you got stuck in the middle of it all.

Imagine my surprise when I was looking through Facebook for any entries about someone getting a new miniature schnauzer, hoping to see a photo of you.  And then I find your ‘mug shot’ for being missing during the hottest days of the year, and being missing for 3 nights.  That could have easily happened when you lived here, as you’d find any excuse to go for an unauthorized field trip.  I’ve fished you out of bushes, twice retrieved you from the kennel of neighbors whose back yard backs up to the house two doors away, and the time the nice grocery delivery lady got you headed back towards the house.   With degenerative hips, knees, shoulders, and spine, it was so hard for me to get you before you got yourself in trouble.  You were found miles from your new home, and were running scared at night when you were spotted.  I’m just so thankful that you were found safe, and unharmed.  And that your new family knew where to post your info so you’d be found.

I still cry when I think of you being gone, but I know the family you went to was needing a fur-baby.   Maybe it was just supposed to be this way- that I kept you safe until they needed you.  I know it’s safer for me- no constant fear of falling with you darting under my feet and legs, no totaled bed to change to recover from  (takes me 2 days to plan for changing the sheets on a good day), no worrying about you getting loose here, Shelby is calmer (though she did seem to wonder where you went for about 30 seconds- I think you might both need to be the only dog in a home), and you have someone who can be more active and do more with you.   But love doesn’t get shut off on my end just because you’re gone from here.

I’ll never regret getting you– just putting you through the confusion of leaving the home you knew, another month at the kennel where they observed you (and evidently cured your poop eating- wish I’d been let in on that little trick before I had to hand you over- I asked anybody I could for help with that), and then being with your new family for a week before you took off.  I’m sure they were terrified.  It was over a month ago, and I cry thinking about you being alone and scared in the dark.  The heat was terrible, and I’m guessing that’s why you moved around at night.  You were used to 66 degrees year round.

Shiloh, it’s OK to be happy at your new house !  I want you to be happy- they love you and want you so much (as I did).  They didn’t care that you weren’t a baby.  I’m not sure they got all of the info on why you were sent back (and it was mostly about my body falling apart, which wouldn’t have been an issue if the regurgitation of poop you ate hadn’t made frequent bed changes, different poop eating deterrents, many types of foods, behavioralist help, not much help from the vet who you saw here, etc. necessary).   I really did all I could to keep you.  I knew it would be hard to give you away- you were one of three who lived in this house…and your absence is felt.   I wasn’t sure I expected to still be crying almost daily. I’d been doing fairly well until I saw the mugshot.   I’m just so glad you’re safe.    They love you, Shiloh- let them.  Don’t run off.  Go to them when they call you.  Learn what they want to teach you.  Be your usual goofy, happy self.   Throw your toys in the air and wonder where they went.  Run around and slide on the floor.  Snuggle with your new family.  You look good !  Your eyes are bright, ears up- be the sweet, funny girl you always have been.  You don’t need to be afraid.

I’m gutted, as I knew I would be.  But it was the only logical thing I could do for all of us.  It wasn’t lack of love, but the hardest decision I’ve ever had to make, and I’ve had a life of lousy situations to survive. You needed more. I needed less. But it was never lack of love. I’m the only one who had  a choice in this, and that is so unfair to you, even if you are a dog.  I’m so sorry.  But please, let your new people love you.

  • * * * * * * * * *
    Letter I wrote for your new family, though I’m not sure the kennel gave it to them (from what I’ve heard, you’re not like this as much anymore ):To Whoever Becomes Shiloh’s new family,                      June 12, 2019

Shiloh has been with me since she was 8 weeks old- and was VERY wanted. She will always be loved by me (and her big “sister”, another schnauzer).  This has been an agonizing decision.  The ONLY reason I’m sending her back is because of a change in my health, and inability to manage a particular behavior (more detail later).  Ideally, she’ll be with someone who is home most of the time (I’m rarely away from home). She does “scream” if she’s feeling alone.  But she’s also full of kisses and tail wags when I came back in the door- even if I was only gone long enough to take the trash to the street on pick-up day.   She’s my 5th miniature schnauzer.  Shiloh will be 2 years old on July 8, 2019.

Shiloh has always been very friendly (that’s how she landed with me- she wouldn’t let any other puppies get near me when I was choosing !!), curious, and wants to please, though there are times when she needs extra patience to catch on to some things.  There isn’t a mean bone in her, and she is very eager to check out new people.  She’s never been around kids, but I haven’t seen anything about her that would give me pause to introduce her to children.  She loves to snuggle, and will spend as much time as you allow being on your foot, lap, or lying next to you in bed.  She plays well with my older dog.

She also loves to fetch her toys- but don’t let her have any type of edible toy (rawhides, antlers, chew sticks, rope toys, or stuffed animals) without supervision.  (Her sister broke a tooth on an elk antler, requiring surgical removal).   Shiloh has jaws of steel and can go through half of a foot long compressed rawhide in an hour- eating it as she goes. She has decimated a lot of toys- but never hurt my stuff after a right foot slipper when she was very little. She will sneak off with things without hurting them (socks and slippers are favorites).  If you simply ask “Is this yours?”, she’ll slick her ears back, and look pitiful.

It breaks my heart to not know where she’s going to end up.  If I had known that my body was going to break down like this, I never would have gotten Shiloh, and put HER in this position.  We are bonded. She is bonded to my older dog.  She loves the groomer and vet- but she wants me when all is said and done- and I’m sure that she’ll adapt to a new person, but for me it’s like ditching a kid, when fur-kids are all I have.  But I know that one more full bed change could take out one of my shoulders for good.  I have to plan linen and laundry. I can’t lose my shoulders when I’m told I’m going to need a wheelchair. 

Shiloh is paper-trained (I put a crate tray on the floor and put pads on that, so there’s a ‘buffer’  to avoid leaks).   She’s  been very good about going on the pads for a long time.  She will need to learn to go outside if you expect her to do that.  But it sure is nice to know she has a place to go 24/7, in any weather- or for any MD appointment I might have.  I get the human underpads 30 x 36”  by the case from Walmart or Amazon- much cheaper than dog pads or individual bags- and hold more than one pee.  I do NOT recommend small metal crate training with Shiloh because of the coprophagia (see below) and vomiting. Everything would be a mess.  A contained area that is easily cleaned would be ideal if she can’t be within site at all times.  She’s had a plastic baby ‘pen’ that configures into a hexagon or rectangle around the pee pad tray for training purposes.  It’s bigger than a regular crate, but much easier to clean, and less likely for her to jump around and get messy. 

Shiloh is a poop eater (coprophagia).  She’s done it since she was little, and it’s actually VERY common with dogs (goes back to hiding their scent from predators).  I’ve tried various products to make her poo taste bad to her, but none have been all that great.  The only thing that works the best (and isn’t %100 foolproof- but probably %95) is to supervise her pooping, and clean up immediately (even if you take her to the yard).  She will eat poop and throw it up (that’s where my degenerative shoulders and hips make it extremely painful  to manage linen and laundry, causing pain for days).  It’s not her fault.   She’s not doing it on purpose.   She wants to please, and she doesn’t understand the connection between eating the poo and getting sick. She also doesn’t have the ‘dog gag’ sound to warn you- she just spews.  I’ve done what the vet, kennel owners, and dog trainers have suggested, and she still eats poop at times when she can sneak it.  This is her “special needs” situation.  She needs someone who is able to be there a lot.  There are times when she’s fine, and poops without eating it- but then there are the times when she barfs up the poop.  I’m sending some remedies that have been marginally effective for short periods of time- the behavior modification has been the most useful.  I can’t stand as long as she sometimes needs. 

With my physical limitations, I’m impacted for 2-4 days after a full linen change and laundry when she does eat enough poo to throw up (and it’s a lot sometimes- not just a spot here or there).  For someone with a working body, it might not be any big deal.  I also keep a waterproof pad and some blankets on her side of the bed.  But she ‘misses’ sometimes.  Again- NOT HER FAULT.  If I lose my shoulders, I lose independence. 

I take her to her pads before bed and tell her to ‘go potty’ (pee), and then she sleeps in her “house” (carrier) on my bed.  If she needs to pee at night, she’ll whimper or scratch the carrier to wake me up, and I take her to her pads, wait until she’s done- then back to the carrier until it’s time to get up.  If she whines again, she likely needs to poop.  She can be sneaky, and go get a turd- where you’ll see a ‘poo track’ on the pads with no poo to go with it.  If that happens later at night, I do NOT have her sleep in her carrier, in case she throws up; she’d be covered in it- and that’s not fair to her, besides being a mess.  She is content to sleep in another room particularly if there’s a baby gate so she can see her person.  I have a dog bed for her by the baby gate.  Her “house” will also do. I’m sending some pads for peeing, some for covering furniture, and lightweight waterproof massage table covers that are good for chairs. 

After meals (twice a day), I put her in the  “house” for 30-40 minutes – or until she indicates that she’s antsy, and take her to the pads and tell her to “hurry poop”.  When doing this at a new place, she’ll likely need her leash on to make it easier to keep her focused.  She is a bit ADHD when it comes to maintaining her attention- she sees 100 things she’s interested in, all at the same time.  But she’s not quite 2 yet.  My others did the same thing at that age, and chilled over time.

Shiloh is a ‘greedy eater’.  She inhales food, and has ‘puzzle bowls’ to slow her down, or she throws up (I’m sending several bowls, as she figures them out).  She also loves ice cubes.  I tried freeze dried green beans for a low cal treat, and she eats them whole, then barfs them up intact but rehydrated.   She’s been eating Blue Buffalo Basics, Turkey and Potato Grain Free DRY dog food (per the kennel recommendations).  I gave her something with corn in it and she treated it like movie snacks- after she’d pooped it. She’s been on other dog foods, and this one does give her turds a more formed texture.  I’m sending a container of the Blue Buffalo- there’s more than enough to transition to another food if you prefer- but watch out for any stuff with corn.   She also loves frozen pumpkin puree.  Either drops on some parchment, or a very small ice cube tray work great.  A teaspoon per meal is sufficient if you choose to give it to her.  Pineapple was suggested, and it does seem to help a bit- but she doesn’t chew well (if at all) if she really likes something (and then barfs up the whole pieces) , so I puree the pineapple and freeze it in a candy bar mold that has segments that I cut and put in a zip bag in the freezer- she loves anything frozen. Greek yogurt ‘cubes’ are also a hit.  The Turkey Blue Buffalo, pineapple, and Greek yogurt were the info from the kennel when I asked them about possible solutions- I did NOT want to let her go. I asked her vet about doing some health checks for reasons she  might be eating poop and she basically dismissed me. 

I’m sending her pajamas- in the winter, she gets cold, especially after being groomed- she acts like she’s being tortured, but the shivering stops. (She can be  quite the drama diva).  They are also a bit like a loose Thunder Shirt in calming her down if she’s on a wild-woman energy burst that goes on for a considerable time.  The PJs relax her.  I’m also sending toys, a blanket, her carrier, and a couple of pairs of socks with my scent on them.  Her nickname is “Lo-lo”.   She knows “kitchen”, “cookie”, “go potty”, “hurry poop”, “good  girl”,  “sit” (though that kind of depends on how much she wants what she wants at the time), “check the door”, “I’m coming back” (won’t follow me to the bathroom), and a few more I’m blanking on (I’m crying my eyes out writing this). “Stay” is ADHD dependent- don’t count on it.   She thrives on “good girl”, and eagerly soaks up the ear scratches and verbal praise.  She’s very sensitive to tone of voice.

She rides well in the car, and I’ve included her seatbelt adapter that attaches to a HARNESS (never just  her collar). She’s not perfect on a leash, but has been doing better.  She’s practiced in the house and trips to the groomer or vet. I’m keeping her collar- I want something of hers to keep.  She’s used to the Puppia brand.

If she’s freaked out by something (fireworks, thunder, etc), she finds comfort snuggling on my shoulder, sucking my earlobe.  It’s a little slobbery, but she calms down.  Usually, she just looks to see how I react to something, and then chills out if I’m not bothered.  She’s done that since I got her.   If she feels ‘alone’ she screams… not howls, not barking, not crying.  Once she sees her person, she’s fine. Until then, it sounds like  someone is trying to kill her.  There have been some Academy Award worthy performances.  Scared the snot out of me first time she did it.   

She will run if she gets outside- and doesn’t stop until she finds something in the neighborhood to investigate.  I can’t chase her (it’s more of a hobbling walk) – so that is another reason (for her safety) that she needs someone more mobile.  I haven’t given her time to come home on her own, as she is SO friendly that she’d let Jack the Ripper in the house, and ask what kind of knife he prefers.  She could be dog-napped very easily.  Or run over, as she’d never stop for traffic.

Shiloh has some skin allergies that didn’t get any better with Benadryl or a prescription antihistamine from the vet.  I use chlorohexidine wipes (available for dogs) if she starts licking a lot.  She has a couple of ‘lick’ areas on each side where the hair has fallen out- but it’s already grown back a lot.  That’s not unheard of in schnauzers.  She loves butt scratches right above her tail on her lower spine, and any ear and neck scratching as well.  Most of the time, the allergy doesn’t seem to bother her.  They’ve cleared up quite a bit with some dog CBD treats- sending a bag of those as well.  One a day is fine. They are low dose, and have NO psychoactive effects. 

Even with her quirks, she is such a sweet girl.  She loves everybody.  That makes her a lousy guard dog (though she is good about alerting to vague things, and has been growling a bit more at the door, and not just people on TV), but an amazing companion. She does things that are just funny (usually with her toys- flinging them all over, and then wondering where they went, etc).  She has very little discrimination with edible things- and will snarf something up without chewing or ‘testing’ it.  If you have any type of things that are toxic to dogs (cigarettes, medications, foods dogs can’t have, etc), I’ve found it much easier to put up a baby gate while I handle anything that could hurt her, until I’m done. When she’s pooped after meals, she is loose in the house, so she can run around.  She loves stairs, and sliding across hard floors.  She’s been OK for a couple of hours home alone (loose) if the other dog had a vet appointment.

It’s impossible to convey how gutted I am about having to have Shiloh rehomed.  My intent was, as it’s been with the other four dogs I’ve owned over the years, to be a forever home.   I want the best for her, and I don’t think it’s me, no matter how much I love her.  A piece of my heart goes with her.  IF my shoulder goes out completely, my independence is shot- and then she’d need someone else anyway.  I’ll remember her every July 8th.  And likely a lot more often than that.  She’s one of the sweetest dogs I’ve ever met- and it’s been a  privilege to have such a joyful little being in my home.  

I will deeply miss Shiloh.  
Tearfully,
Shiloh’s First 21 month person  
* * * * * * * * * * * * *
This was her life before I had to hand her over to the kennel.  I know there have been changes, and if that’s for the best, then I hope she’s doing well adjusting to the changes. 

And Shiloh, you will always have a piece of my heart.  Let your new family have yours.

 

 

When Multiple Local Doctors Finally Beat You Down…

This has been a year I hope to forget.  I’ve had endless appointments and testing done for GI issues (starting with a large gallstone that nobody would remove without repeating tests that had been done two years prior with no change in those symptoms), kidney function abnormalities, etc.   I’m done. They win.   Even though the new primary care doc (different health system) is a far cry (in a good way) from the “healthcare providers” (use term very, very loosely)  I’ve seen this year, I am no longer interested in testing, treatment, or being BOTHERED by sitting in waiting rooms and arranging my limited life around waiting rooms.  My newish primary doc is a decent sort.  But he wanted me to see a GI doc before referring me to a surgeon.  Well, I don’t want a surgeon now.  I don’t want ANYTHING from medical people in this town.  I can use Urgent Care for simple stuff.  That (and any trip away from home) requires getting in and out of the car twice for one appointment/stop.  THAT causes a lot of pain that generally results in at least a day or two in bed to help the muscle and joint/disc pain.

Sent to current doc after messaging about still seeing GI doc AGAIN, when symptoms have improved “enough”:

“I’m SO, so sorry to be a pain in the ass. Really, I am. I just don’t want to be bothered with medical anything other than the bare minimum to stay alive within the ‘cage’ of my house. Appointments are not worth it to me. I’m buying my own Blood Sugar strips/CPAP junk. My labs were better. That should buy time. Plus, appointments are painful with the DJD and DDD. A single there/back = 1-2 days in bed.

I’m just DONE with folks meaning well, but not hearing that I DON’T CARE anymore about finding out about any new problems. I won’t go to the ER. I don’t care about the gallstone. I don’t care about anything but basic maintenance. I’m trying to wean off of all meds I can. I’d like to spend time not thinking about appts, tests, etc. The nausea is better. I’ve had mild nausea intermittently for years, and that is livable. Belching yesterday’s lunch at breakfast the next day tells me that my gastric motility is dull- don’t need a test for that, and don’t want meds for it. The stomach pain is much better since NOT having to deal with the other health care systems.

If I’m not interested, why should anybody else put more energy into something that doesn’t effect them?

My goals: 1) not wasting what little is left of quality of life in one waiting room after another. Nobody will fix the things that effect mobility (clot history)-and my shoulders are not strong enough for rehab anyway, and the rest of it is just not fixable. After the hell with the other healthcare systems in town not giving a damn about what I want out of things, I’m just done looking for anything else that would need anything done about it.  If that means palliative now, so be it. I can’t leave the house in the late spring/summer/early fall during the daylight (heat) anymore. If I have to have anything done, it means hiring “help” and I don’t “do” babysitters. And 2), not contacting your office unless there’s something that can be treated VERY, VERY simply (UTI, URI).

Had I seen you first this year, I doubt I’d be where I am now, but my PCP of 11 years was still here- and she was the ONLY reason I stayed with freaky OSF for so long. I don’t trust much right now (nothing related to you). I hope that changes. I’ve had 2 GB ultrasounds, the endoscopy, and abd/pelvic CT. If there’s something going on that isn’t on any of those, I won’t want treatment anyway. SO why waste anybody’s time?   I’m done on the patient rodent wheel. I’m fully aware of the risks.
I’m sorry. “

We’ll see if this is clear enough with the new guy.  He’s been reasonable in the past (saw him many, many years ago when I was still able to work, and only left when I switched jobs and had different insurance).

DO NOT MOVE TO Northern ILLINOIS if you have a lot of medical issues and expect decent care from  “local” “healthcare professionals” unless you get the one that implies “merciful”  (all sold out to other companies and they’re no longer advocates for patient well-being, but profits, but I’m hoping the one I’m with now is at least not terrifying).   Smaller communities are being paid bonuses to deny care to seniors and the disabled…so they send folks for tests that are cheaper than the fix… and/or hope that folks give up, since that population is limited in transportation options many times.

https://www.forbes.com/sites/theapothecary/2016/02/21/aca-savings-paying-doctors-and-hospitals-bonuses-to-deny-care-to-patients/#6a9ec5aa6c46

Well, mission accomplished.  I’m done.

Buying a Reborn Doll

I collect and create reborn dolls.  I often cruise through eBay to find used reborn to either collect as is, or to repair/upgrade them (they’re also USUALLY cheaper)…. and I have found some shady junk inside of those dolls.  And those are the ones that are actually reborns.  Many are just plain old dolls or collectible dolls that are mass produced.  None of those are reborns. They CAN be made INTO reborns- but out of the box factory dolls are not art.  Reborns are an art form.  Those who paint them are reborn artists.

What is a reborn?   A reborn doll is a one of a kind, hand painted collectible doll for adults. They are NOT toys.   It is not a factory made doll. It’s not a doll from Ashton Drake or Paradise Galleries (those are collectible dolls- and many are very sweet).  It is not a “handmade” thing with over 100 available from China.

It takes hours to make a reborn from a blank kit.  The paint is done in layers- starting with the veining, base skin tone, blushing, nails tipped in white, eyebrows and lashes, etc.  Many are indistinguishable from a real baby in photos.

They are then weighted and stuffed.  The weighting is done with fine GLASS BEADS- not aquarium rocks, steel wool, rags, newspaper, pebbles, or anything else besides polyfill stuffing.  I’ve actually pulled those things out of dolls I’ve purchased… and immediately fixed.  I personally do not like poly pellets.  They don’t add enough realistic weight, and take up much more space, without providing any real benefit.

Reborns shouldn’t have eyebrows drawn on by permanent markers.  There should be visible blushing. Every wrinkle should be painted.  Hair can vary.  I personally find human hair to be creepy- but mohair rooted one hair at a time is exquisite when done well.  The limbs should be filled half way with glass beads, and the rest STUFFED with polyfil.   The weight in the body and head is done by filling nylon knee highs with fine glass beads, and putting them in the head (so it needs to be supported and is floppy IF the size of the doll is realistic with that- so no floppy 24 inch and up babies.  Another  weight is put in the butt.  The head should be fully stuffed with polyfil stuffing. You don’t want empty cheeks.   If there is a magnet for the pacifier, it should be placed correctly so that the pacifier fits the face properly.

They are expensive. Just the basic materials cost more than 130.00 just for the very basic doll kit (others cost more), body, stuffing, paint, beads, clothing, magnet for pacifier, etc.   That doesn’t include anything for the time it takes, or the ability to do them.   Solid silicone dolls are much more expensive.   And they weigh a ton.  But some are stunning.   The ‘usual’ reborn is vinyl (not the same as silicone, no matter how many times the Chinese sellers on eBay repeat it).   I typically charge $250-350, depending on the size and cost of materials. That gives me about $100 for my work, which takes many hours over several days.

This is how they start….

This is the Caleb kit (first one I did).

And this is how he ended up:

“Caleb” kit
14″ long, 2 pounds

Caleb kit

So be picky.  Ask questions.  If your reborn doesn’t look like a real baby- and I mean REAL, then don’t waste your money.  Keep looking.    Forever Babies Reborns on Facebook is my page, and where I will post when I have dolls available (studio is being reorganized at the moment).

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?