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I'm in my least favorite place

I was away on vacation last week, @MoodyBlues. I'm sorry I didn't see your debacle. My heart goes out to you. Lots of love. Keep us posted.
I Love You Kiss GIF by Canticos World
 
MoodyBlues said:
Yay! The PICC line specialist nurse came in a couple hours ago; he found a good vein [via ultrasound] and inserted the midline successfully on his first try! :D

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As for those black circles, you do know that black's the new black, right? Black, randomly-shaped splotches all over your arms are quite the new fashion statement! Tres chic, eh? :) (Think blown, and/or unsuccessful attempts at, IVs.) The great thing about these new fashion accessories is they eventually CHANGE COLOR! Yes, from deep, dark black to blackish purple, to purplish green, then greenish yellow, then yellow and then...poof!, they're gone. :eek:
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Damn, I thought they had trouble getting a needle into my veins!

Hope you are able to get out soon. :(
 
Hi guys. I've avoided posting because I wanted to wait for something definitive, but as of right now we still don't have a diagnosis. I'm in my third hospital, but we've gotten nowhere.

TL;DR we've mutually agreed that I'm going home tomorrow. By "we" I mean me, my doctors, Anthem Blue Cross, and my physical therapists.

There's no point staying here any more when they're out of ideas--and options. Friday the doctor over my case here said that I have a "very complex, mysterious" illness, and it could take "months or years" to get a diagnosis. JAW DROP. :eek: I've had an [outpatient] appointment with a neuromuscular specialist scheduled at the end of September--that was made in July, and it was the earliest we could get.

I've been kicking and screaming to be transferred to USC Keck or UCLA, but--for unknown reasons--that doesn't appear to be a viable choice. It makes no sense to me, as they have a pool of the best, most talented, most up-to-date specialists in all fields right there under one roof; ditto for equipment, tests and technology. All the tests anyone wanted to do could be done during a short in-patient stay...but, instead, they're going to send me from one outpatient appointment to another. The neurologist I'm seeing next month--what if he, too, throws his hands in the air and says he doesn't know? Then I'll be shipped off--with a multi-month wait for an appointment--to yet another specialist...and then what? I guess that's what the doctor had in mind when he said a diagnosis could easily take months or years. :(

So my condition has not improved one iota. I'm completely numb from below the breasts all the way down. I have INTENSE pain in my feet, ankles, and lower legs. I was "forced" to walk; that was with a physical therapist on each side, a safety belt, me clutching a walker for dear life, and a wheelchair behind me. I complied for about two weeks, despite EVERY ounce of my being screaming DON'T DO IT. And I paid for it. It exacerbated the pain in my ankles to such a point that my right ankle hurt *almost* as much as it did when it was broken. I finally said no, I'm not doing it any more. I'm not going to participate in potentially and, perhaps permanently, damaging my body. Since we still don't know WHAT this is, only that it's nerve-related, for all I know being forced to walk could be causing permanent nerve damage. The pain was unbearable.

My refusal to continue walking led to our mutual decision to discharge me. Even though Anthem KNOWS that there's an undiagnosed neurological illness--which caused me to fall over when I attempted to walk!--they want to see "progress"--which, to them, means walking...yeah, I know, it makes no sense at all, but there it is. Even though I know I'm not well enough to be discharged, I'm happy to be going home. I'd rather be stuck in my big, comfortable bed in my beautiful bedroom, with my TV where *I* want it, and DirecTV to watch (and record all the shows I've missed), all my gadgets nearby, and other niceties I've missed. But, on the other hand, one thing I don't look forward to is being back in my bed without Joy Noelle. I know that once I'm back home her absence will be much more prominent than it has been in hospital rooms. So I'm not looking forward to that but, otherwise, I'll be glad to be home.
 
If there's nothing for them to do, they can do it with you home and more comfortable in familiar surroundings (and no one subjecting you to excruciating pain just to prove that it hurts).

Diagnosis is that you're a living enigma... a woman of great mystery! And someone who's deeply cared about by her AF friends.

(I'm not much of a betting man, but if I were I'd be willing to bet that your doctors all have iPhones. Just sayin')

:p
 
It's absolutely great to hear from you Moody. You have been in my thoughts daily. I wish there was something positive in your last post but I'm missing it. Naturally I want a diagnosis and an ultimate solution... we all do. Going home will at least allow you to rest in your own digs. I hope the specialist you are scheduled to see next month is a clever sort and has some answers and solutions for you. Take care dear woman. Thanks for posting. Not knowing anything is far worse than no positive news. We care more than you can imagine. You are AF family... loved and respected.
 
Moody, Olbriar has beautifully captured my thoughts and feelings. I’m grateful you will be in more comfortable surroundings and am hoping and praying for a quicker-than-estimated resolution to your ailments (and more empathy and understanding from PT folks). I live with some chronic pains, but it all pales by comparison with what you are going through.

We’re all pulling for you, Moody, and not just on Tuesday Afternoons, either. ;)

All the best, dear. Sending my condolences and a hug as well for the loss of your dear furriend. She will live forever in your heart. <3
 
I personally do not believe in doctors or medicine and take care of myself. Been fine for a long time that way. I used to tag along with my dad as a kid and he was an MD and I saw a lot of stuff that HIPAA now hides behind the iron curtain. I remember at our old Mercy Hospital that's now long gone and a health fitness gym today, that the ICU was in the basement level, and just for the record, this hospital was very out of date at the time, around 1988 or so, so it had the same look and feel as the hospital in the show Emergency! so that's the aesthetic. That ICU ward was depressing as heck, very dimly lit, with very blue fluoresent lighting, and I wondered how the nurses there stayed awake. I never could figure out how that would help anyone, so I asked them, 'this area is so grim. How do you expect anyone to get better here?' and I will never forget their response 'son, these people don't come to ICU here to get better....they come here to die. we can only help them in their final moments here'

So I have a very dark view of the medical industrial complex, groups like Pfizer and Monsanto and the like, the over-reliance on 'magic pills' in TV commercials most of them to treat easily prevenable illnesses such as heart disease and high cholesterol (which going vegan helps, but that doesn't get those doctors their yacht payment) and then them making it their livelihood so they're not likely to want to do anything that comes between them and the fancy life they live. There's a neighborhood next to the hospital where all the highest-paid doctors live, called "Copper Creek". This area has multi level mansions, with Rolls Royces in the driveway next to a Mercedes-Benz and Porche, and many of the doctors, be them cardiologists or brain surgeons, also own yachts.

Also, I have witnessed a ton of my beloved family members go in, and never come out. They sometimes come out--in worse shape than they went in, and I often wonder if they would have been better off never going in to begin with, and wonder how such malpractice is allowed to legally continue. Sometimes I wonder if they're partners with the meat and dairy industry since I recall many telling folks in Mercy to eat more meat or drink more milk since these patients were either lacking, well according to the doctor, protein and calcium. they are bought and paid for too, much like the infamous time that Phillip-Morris used to partner with doctors to put out ads saying things like:

camels_doctors_whiteshirt-799x1024.jpg



So i am not one bit surprised that your doctors are as useless as ours were. and are today. Things have not changed since those ads, only now they're into the whole 'carnivore diet' bandwagon, with people like Alan Savory, Dr. Shawn Baker to name two. They used to day 'those who learn nothing from history are doomed to repeat it'.

that rant said, there are a few doctors who care more about people's health, the health of the planet, and the livelihood of the animals on it, than their paycheck, and they're members of the Physician's Committee for Responsible Medicine. I would seek one of them out since you're getting nowhere so far, and here's their site:

www.pcrm.org

Physicians Committee for Responsible Medicine

The Physicians Committee for Responsible Medicine is a nonprofit health organization that promotes preventive medicine, conducts clinical research, and encourages higher standards for ethics and effectiveness in research and medical training.
www.pcrm.org www.pcrm.org
 
@nickdalzell, I hear your frustration and understand you've had the experiences you've had, but they're very different from mine.

As for doctors and hospitals in general, I definitely don't share your feelings. Had it not been for the very same hospital I went to this time, I would've died from sepsis in 2016. They saved my life, thanks to their ER being on the cutting edge. I found out long after nearly dying from septic shock that many hospitals don't have an early intervention protocol in place for sepsis, but mine does. It includes aggressive treatment with IV antibiotics and fluids BEFORE lab results are available; the fact that my ER knew to do that is the *only* reason I'm here typing this today. Well, that plus its excellent ICU. :) Their ICU is nothing like you described. I can't say much more about it from my own perspective, as I really don't have clear memories of my time in the ICU, but my relatives have told me that it was bright and the staff super-attentive. I'm here, aren't I?

As one of the many....MANY doctors I saw over the last two months put it, what I have is a "VERY complex and mysterious condition, and it could take months, or years, to diagnose." My jaw dropped when he said that. I asked, "what am I supposed to do? I can't LIVE like this!" No meaningful response. But what can he say?

Generally speaking, if I had taken the attitude you have toward doctors and hospitals, I'd be dead multiple times over, starting at 21. Not seeking medical treatment would've been the death knell for me, multiple times. So while I respect your right to have your opinions, I don't agree at all. But you've apparently been lucky, not having any serious illnesses. I mean, I'm assuming you haven't performed any brain surgeries on yourself to remove brain tumors, right? :D

FWIW, as you know I've been vegan for years, and vegetarian before that, yet I consistently have high 'bad' cholesterol. I was first diagnosed with that at 18! It's familial, and there's nothing lifestyle-related I can do to help it. Ditto for fatty liver disease.

BTW, I've been a card-carrying member of PCRM since the late '80s. I wish they could help me, but that's not really what they do. *shrug*
 
I can understand both sides of this conversation: yes, the Big Pharma complex survives on the philosophy of "a patient cured is a customer lost" - but so is killing a patient with too much symptom management. There are, however, physicians who take the Hippocratic Oath seriously and will do everything they can to help their patients get better.

@MoodyBlues is a rare condition, indeed: if not a combination of rare conditions. Unraveling this mystery could take awhile... and while suffering may endure for a season, it may lead to research that helps untold thousands of others avoid it. This is a horrible state for you, @MoodyBlues but I am convinced that, in time, a greater good will come of it. Hang in there!
 
When the numbness, weakness and pain first started back in March, I had no idea that I would now be bed-bound, unable to stand up or walk, and that it could take years to get a diagnosis. I'm trying hard to keep my chin up, but I don't know how long I can do that! I couldn't have imagined that numerous neurologists would be unable to hone in on a cause, or come up with a treatment plan. I want to get out of this bed!
 
I can certainly understand that! We all wish that for you as well. I'm an instant gratification sort of guy and lack the patience to maintain my sanity if I were in your position. Be stronger than me fine woman. I hope that they can get onto the cause and a course of recover soon for you. You have proven to be a survivalist. I'm so sorry you have to deal with this but at least you have what it takes to come through this where many do not.
 
Thanks, @olbriar--I appreciate the kind words. This...THING has been very different from any other illness/condition I've ever had. Usually, there's a very defined order: you have symptoms, you report them to your doctor, tests are run, a diagnosis is made, treatment and/or a cure are provided, and then if you need physical therapy, you do that. End of story. But with this, it skipped a step or two! I was ultimately sent to a skilled nursing facility, in other words, rehab--and I was kicking and screaming about that. I kept saying "this makes no sense! REHAB? Rehab from WHAT?! We don't even have a diagnosis, and we haven't treated the PROBLEM, and now you're sending me to rehab?!" But the red tape of the healthcare system is what it is, and all my kicking and screaming did no good.

The *one* good thing about being in the hospital for two months was being away from the environment I shared with Joy Noelle for so many years. At least in the hospital, with foreign surroundings and nothing she had ever touched or made memories on, the deep, deep aching grief was somewhat limited. Mostly late at night, trying to fall asleep, I'd think about her... But now, back in our environment, everywhere I look there's a real or remembered part of her, whether it's recalling how she did naughty things, like getting up on the TV dresser--strategically placing herself in the EXACT spot that blocked my remote from working, to the little cedar chest containing her ashes, which has been on my nightstand since I got them. I have yet to move her to my collection of little--or, in Little Freddie's case, *big*--cedar chests on my dresser. I've wanted to keep her close to me for now. Sometimes I rub my fingers over the engraved "Joy Noelle" on the chest's brass plate and just think about her.
 
I am quite the opposite. I made my home a tribute to my great grandparents' time capsule of a home, with any 'modern' technology being what was around whenever I had Daisy in my life being what I use, typing this on a 2010 Dell Latitude E6500 as we speak. Any memory of her and them allows me to feel connected to their spirit, while the thought of being in an overly white, brightly-lit-by-harsh-5000k-LEDs place such as a hospital being my vision of purgatory. Why must hospitals be so bland and creepy anyway? You would expect them being in warm, comfortable home-like familiarity over cold, sterile and bleak in order to actually help people, but they're a business and unfortunately, the longer they can keep people the more they make. They refuse to just admit they 'do not know' and make up big, unpronouncable words to explain things and sound scary and authoritarian. I will never trust them until they're a public service like the fire department, and don't make their salary through healing people--that just sounds so corporate and unethical. I mean at least go back to the friendly family doctor who had the small home-like practice, which was often his/her home even, aka the Norman Rockwell doctor. Not the modern corporate vulture they are today. Also they need to disband their partnership with the meat and dairy industry which is no different than their partnership with Phillip-Morris in the '50s to take them seriously anyway, because they are still promoting the whole 'MYPLATE' crap over the food pyramid, despite the pyramid being more accurate what with the meat and other animal products being correctly categorized with the unhealthy candies and sugars, but since the meat lobby got angry they had to capitulate to their demands, which borders on misinformation like being anti-vaxx, yet is allowed to continue. I am not about to trust anyone who is in bed with those lobbies, makes tons of money treating easily preventable illnesses, and who still puts their signature and approval on Got Milk? adverts in schools to experiment on MY body ever.

The further I get from the things that remind me of beloved pets/family the less happy I am. I feel like I lose something important. I am glad I got so many photos of Daisy and Bubbles instead of memories that would fade with time. I remember tech in Daisy's era being full of innovation and nature-inspired, approachable UI design. I cling hardest to those memories.
 
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