In my many long years of getting sick, sicker, even sicker, and under the wings of hovering Death, I have concluded there are four ways uniquely suited to get you sick, sicker, then sickest.
I do not count sitting in a doctor’s office full of people NOT wearing masks who claim their cough is “just an allergy.”
No, I mean “out in the real world” where shit happens.
These are the four best ways to catch whatever is going around.
1 – Be an elementary school teacher. You will be sick ALL the time. Just keep the Tamaflu handy and the tissues and throat lozenges nearby.
2 – Work in a mall. You will earn very little money and you are doomed to endless disease. A single sneeze can infect everyone in half the mall. Two sneezes? Total collapse of all immune systems.
3 – Be a working reporter. You will meet everyone everywhere and at least 75% of them will have something lurking, just waiting for you and your cameraman to show up. When Garry was working, he had a cold, the flu, bronchitis, sore throats, ear infections. You name it, he had it. Four days later? I had it too. We believe in sharing.
This probably applies to politicians on the stump and performers on tour. Which is probably why they won’t shake hands. All they see are germs.
4 – Take an airplane anywhere. The recycled air is putrid. I swear this is true — takes whatever diseases every passenger has on the plane and pumps it up. I have never taken a flight anywhere and not gotten sick within 10 days.
Except Arizona. Maybe it’s that lovely, hot, dry air or something. We survived both trips to Arizona and we felt actually better after a week in the warm, dry air.
I should add one more: life in the cold north of America where it’s always damp and the air is full of allergens. And never, ever go to see the doctor if you aren’t already diseased unless you know for sure nobody sick will be there. Those allergic coughs are not allergies.
We are off to the doctor. Garry is deep into sore throat country and I’m just coughing. I had the sore throat earlier. It’s still sore, but I no longer feel like someone cut my throat. The microbes have moved to my chest.
Finally, the doctor comes around.
Meanwhile, since my contractor — the one who was supposed to fix the window and the front wall — has vanished, I’m looking for another one.
What IS it with these guys? They want work. They advertise for work. They complain online about how poor they are — but they don’t show up for work or even estimates. The don’t return emails or phone calls and they are NEVER in the office. Maybe they would be LESS POOR if they actually showed up to do the jobs for which they contract? And answered the calls for work? And gave estimates and then — dates to work?
At least I didn’t pay this one up front. It’s nice to be merely frustrated as opposed to out of money.
I’ve got another guy coming Monday. When I said I was sick and said “Um, I would prefer to NOT get a cold … so … like … how about Monday?”
I said Monday would be excellent, especially since I still thought today was Thursday and the doctor was tomorrow. I’ll either be better by Monday or in the hospital working on breathing without machinery. I’m expecting to be better though. I really hate when I breathe and I get that crackly bubbling noise. It sounds like I’m breathing through suds.
Is that bubbling noise in my bronchial tubes anything like actual glimmering? Do people glimmer? Are my lungs glimmering? My throat is store, my head hurts and I don’t feel smart, capable, creative, or anything other than tired, tired, tired. There isn’t a pill on earth that will make me feel better.
Today we were supposed to get weather in the 70s with bright sunshine. The temperatures are really in the 40s. It’s grey, dark and probably going to rain. I believe we skipped right past “the nice day” and moved into nasty weekend weather.
I have more than 500 pictures I took over the weekend, mostly of the Curley’s show, but a few others. I’ve processed a bunch, but there are so many it will take a while. Lots of duplicates, too.
Mostly what I’ve got is a fierce headache. It’s going around, which is why the doctors are slammed with patients. If it’s going around, we’ve probably got “it.” I often think we should never leave home at all. It’s safer that way.
The past few weeks have been intense. I lose track of time. Retirement tends to make our days and weeks run into each other seamlessly. It can be difficult to remember when something happened — whether it was yesterday or a week ago.
I generally don’t mind the streaming life we lead. It’s peaceful and I’ve grown fond of our quiet life in the country.
The medical stuff, though, has lent a level of pressure and complexity that has made me more alert. The first was the realization that the hospital we supposedly depend on is a genuine, card-carrying mess. It’s not just me saying so, either. The Internet is full of upset people who have registered complaints and never had them addressed. Nurses assure us that the hospital is “atrocious,” which isn’t the word you want used to describe your primary medical facility. This wouldn’t be such a big deal for me because I have my cardiologist and oncologist at other facilities. I am graced by Blue Cross’s PPO for Medicare patients which lets us use any doctor and hospital.
While I’ve been getting aggravated about my own little issue, I’ve been getting more worried about Garry’s cochlear implant. We have only seen the doctor at UMass. There is more I don’t know about this procedure than I ought.
There are many ways to do it. I haven’t done my homework. Meanwhile, putting Garry in the hands of the people at UMass? If I can’t trust them to take a simple message, why would I want to put my beloved into their hands?
Hospitals aren’t about doctors. The people who run hospitals are receptionists, office managers, nurse’s aides, and nurses. You don’t see doctors much. They come, perform surgery, drop by to tell you you’re fine (or not fine or will be fine), but they are rarely visible on a hospital floor. All your daily business will be managed by the underpaid, overworked, and often foreign-language-speaking minimum-wage workers who slouch your way when you press that “I need help” button.
I’ve been overdosed with medication to which I’m allergic despite my urgent warnings. Found myself with no functioning lungs and a stopped heart — information that was conveniently never written into my records. Hallucinating from morphine, to which I am allergic. Fed food guaranteed to kill me if I was foolish enough to eat it.
Because nurse’s aides in most big hospitals don’t speak or read English. The doctor’s messages are meaningless to them. They have no idea what they are doing because no one trained them. And some of them just don’t care. All they want it a paycheck and to get off their tired feet.
They are greatly overworked and deeply underpaid. What do their bosses expect will happen? Are you really going to get top quality service from these downtrodden people?
Only at Beth Israel were real nurses attending me. Everywhere else, my interactions were with aides and orderlies and occasional a receptionist at a desk somewhere. Conversations were with rude, short-tempered women (sometimes men) who followed “rules” that could kill you because the human mouthing “the rules” didn’t care if you lived or died. The rules were the important part. They were trained to follow the rules. If something went wrong, well, no one can blame them. They followed the rules. They did what they were supposed to do. If there was collateral damage — like a few deaths here and there — oh well. Oops.
No hospital will ever be better than its lowest paid, most exhausted worker. If you can’t improve the quality of your staff with intelligent training, your hospital will always be a horror show for patients.
I should be frantic and would be, but my Blue Cross Plan gives me choices. My alternatives will be less convenient, but at least we will feel safe.
Yesterday was a long day. Between the telephone all morning trying to arrange a simple doctor’s visit — then going off to find out if I have cancer again (if you’ve had it once, you always wonder if it will come back), I was well and truly done by the time I got home.
I know I must be improving, though. A year ago, a day like today and I’d be barely able to crawl into bed. Now, I can manage to put together dinner, even eat dinner. I’m tired, but I’m still human. It may not seem like much to you, but it’s a big deal for me.
Garry thought I should write to the hospital and tell them it had a few issues it needed to address. It’s the only big hospital in the county and it is important not only to us, but to every family in the area. It’s not like Boston where you have 20 good hospitals at your doorstep.
I agreed with him in principle, but quickly discovered UMass doesn’t actually have an area were you can comment about “customer service” issues. The internet is full of complaints they’ve yet to answer. There are a lot of people upset about it. It’s infuriating to have just one really good local hospital and so many problems. There’s no reason for it, either.
They have a serious communication problem.
So I wrote to the head of the hospital and its PR consultant. I casually mentioned Garry and they casually called me back in less than half an hour. I’m pretty sure I’ll get to see a neurologist. Pretty sure. Not positive, but at least I feel I have a better grip on it.
Between UMass Memorial, Dana-Farber, and a trip to the grocery, we came home beat. I believe this was a productive day, but I am exhausted. Every part of me hurts.
I’m going to need a long sleep to get myself glued together again.
The best news of the day? We have flowers. Crocuses and the shoots of day lilies to come. And it was warm enough to go out in a light jacket. Spring really is coming, finally. I have proof!
I was having a dream about how I hadn’t yet managed to see a doctor about whatever it was that happened to me a few weeks ago. Two weeks? Three?
For the past few weeks, they’ve been researching my Pacemaker. Apparently my telling them that I can’t have an MRI because it would suck the Pacemaker out of my chest leaving me bleeding and quite probably, dead as the proverbial door nail.
What make door nails deader than other things? Has anyone done any research on this issue? No? Well, isn’t it about time?
Meanwhile, back at the doctor and hospital, apparently a mere patient with the implant can’t say “No, don’t do that, it will kill me.” There are all these privacy laws in place, so mere information from the original source — me — is inadequate to stop the progress of grinding towards this very expensive test that I don’t merely not need, but which would end my life.
It took almost a week of research by the doctor’s nurse to track down my device and note that it cannot be allowed anywhere near those big magnets. She called the manufacturer, but privacy laws forbade them from saying anything about it. That I had the information was apparently irrelevant. Calling my cardiologist — again — was a no go. Privacy laws.
Meanwhile, I got a call from the MRI people to schedule an appointment. I had already had this same discussion with the nurse and said “No, no, no MRI no, not ever” but UMass Memorial does not give up easily.
So I said “I can’t have an MRI. I have a Pacemaker. A metal one. NO MRI. Never ever.”
“When did you get the Pacemaker?”
“Four years ago,” I replied.
“Oh,” she said.
That was the end of that call. Next I heard from the nurse who said she was really sorry about that call from the MRI group, but she had explained it, really she had and I said I believed her, really I did.
Yesterday I got a bundle of papers from Blue Cross to announce that they were happy to pay the gazillion dollars it would cost for the MRI that I can’t have because — y’know — it would kill me.
I sighed. Put the papers on the kitchen counter and went on with my day, pretending nothing had happened. It was too stupid and I just couldn’t deal with more stupidity. Especially medical stupidity.
But all night, I dreamed that I was trying to just talk to a doctor to see if anything even needed to be done for this “issue,” whatever it is. I think it’s related to my migraines — a complicated, advanced version of the aura you get before a migraine. If you get migraines — with auras — you know what I mean. It affects your sight and makes you dizzy, sometimes nauseated … and occasionally gives every evidence of your having a stroke. But it isn’t a stroke. It just looks like one.
It goes away without a trace and no amount of testing or tracking will find any evidence that it happened. Moreover, there are a dozen other things it could also be, all of which leave nothing in their wake. They happen, they scare the pants off you and yours — and vanish.
And may — or may not — ever occur again.
This has happened a few times through my 71 years. For a while, after one or another surgery when I was terribly thin — emaciated — it happened fairly often. Good thing I weighed so little since strong men had to haul my butt upstairs until I came to. Since the cancer and heart surgery, the worst part has been occasional dizziness, but none of those screaming seizures.
I had one, though, a few weeks ago for no apparent reason. Although I don’t think it was important and still don’t think it was medically significant, my doctor thinks I should at least have a chat with a neurologist. I agreed to the chat because how big a deal should it be to see a doctor and talk a bit?
After last night’s dream, I took a deep breath and called the nurse at my doctor’s office who assured me that they shouldn’t be sending me paperwork agreeing to the MRI I can’t have and she would call the hospital and make sure a doctor — or nurse, but anyone someone medical — would call me. Soon.
I hung up. That was the second call.
The phone rang. It was the MRI group trying to set up another appointment. I said “NO MRI I HAVE A METAL PACEMAKER” and she said “Then how about an EEG?” I breathed again. Deeply. Slowly. Counting.
The next thing she did was ask me why I didn’t show up at my March 15th appointment. That was the one I went to where they sent us home because they said there was no appointment or maybe the nurse had screwed up the paperwork, but one way or the other, we went home.
I said “We were there. We were told there WAS no appointment and they sent us home.”
“That’s impossible,” she said.
“Would you like to see the photographs I took of the hospital? And the receipt for the parking? Would you like signed papers from my husband and I attesting to having been there and being turned away as not having an appointment?”
She said that couldn’t be because things like that don’t happen at UMass Memorial. Breathe, Marilyn. Breathe.
“I would like to talk to a doctor before I make any other arrangements. Let’s see if I even need testing.” So she connected me to the Neurology Department. They asked me my name. “Marilyn Armstrong,” I said.
She said “You don’t have to be hostile!”
I said I wasn’t being hostile. That was my name. She asked me for my last name again and I said “Armstrong.” Silence. “I still need your last name,” she said and I said (louder) “Armstrong,” so she hung up. Still breathing slowly I called again. Asked for neurology. Gave my name. Was questioned (again) about how come I never showed up for my March 15th appointment. Said I had but was told there was no appointment. Was assured that couldn’t have happened. Whatever.
“Be that as it may,” said I, “I would like to talk to a doctor. Or a nurse. Or a nurse practitioner. Or even a receptionist.” She asked me where I’d like to be seen and I said Worcester, so she connected me to the Bolton office which is 50 miles northwest of here and nowhere near Worcester.
I hung up and called back. Determination is my middle name. The remnants of the blizzard from two days before March 15 when I didn’t have an appointment
I told her — this time — that a doctor was supposed to call me this morning, but instead I heard from the testing department about setting up an MRI or some other test, but before we set up tests, can I — pause, pause, breathe in, breathe out — please talk to a medical person. So we can decide if I need testing.
She said a doctor would call and I said “Well, I’m off to the Oncologist today, so if no one calls soon, it will have to be tomorrow . I repeated my phone number, name, date of birth and reminded her that this was the ONLY telephone number I have and it is NOTa cell phone. Try to deal with the concept of it notbeing a cell phone. In other words, please don’t text me.
After which I hung up and couldn’t find my new blue jeans. I gave up on that and wore the blue pants I bought months ago and forgot I owned. Went to get coffee and an English muffin with raspberry jelly.
And then I wrote this post.
How many calls was that? I’m pretty sure it was four, a basic quartet, but it gets difficult to count what with the transfers, hang ups, and calling back.
Garry thought I sounded cranky so I explained and he said “Oh,” and offered to refill my cup. I still have to go to the oncologist and hope I still don’t have cancer.
It’s noon. So many more things could yet happen today. Maybe I should call off the doctor and go back to bed.
Nah. Let’s get it done already. Deferring the event will just make it even more complicated.
The hospital said they didn’t get the order from the doctor and cancelled my appointment. They said they had talked to Tracy and she was supposed to call me. It turns out, they did get the papers, lost them or misplaced them — and possibly, forgot to write the appointment in their Big Book.
Sip your Futili-Tea and have a cookie.
This happens an awful lot with this hospital, though it has happened at others. Hell, I went to one hospital that was famous for working on the wrong part of the human in surgery, so when you went in, they took a big, black marking pen and wrote “NO NO NO” on all the parts which were not supposed to get repaired, and “YES, THIS ONE” on the piece due for repair.
I’ve gotten the wrong (potentially deadly) meals, drugs to which I am allergic. Drugs that nearly killed me. And, you can’t pump me full of real opioids — especially morphine — and expect my lungs and heart to function. I know they won’t work. My favorite moment of this was at the Brigham when I refused to use the morphine pump, so they stopped asking, removed the button and set it to just keep dripping.
Then they had to come in and restart my heart. That was fun. This was merely annoying.
The doctor’s visit was supposed to be a neurology chat and an EEG (electroencephalograph), but it didn’t happen because the hospital said Tracy at the doctor’s office forgot to send the order from the doctor and then forgot to tell me the appointment was cancelled.
Except Tracy had the copy of the faxed order she had indeed faxed on her desk when I called, she assured me that no one had contacted her. She said a few words that were unladylike. “They do this ALL the time. They are driving me crazy!”
I wouldn’t mind since no one tried to kill me, except it’s quite a haul to the University of Massachusetts Memorial Teaching Institution, also known as UMass or UMM. It’s a huge facility — the primary medical teaching facility in the state. Certainly the largest. It’s a complete hospital with every kind of department you might imagine — and the only really good hospital in Worcester. There’s nothing wrong with their care — other than not having enough people to manage and the worst software in the world.
Garry had a lot of work just to clear the snow off the car before we could leave the driveway, so he was tired before we got there. Also, we are permanently lost, no matter where we go. That never helps.
Getting to the hospital is easy. Go to Worcester. See those giant buildings? That’s the hospital. Next, you have to locate the building. Not so easy. There are dozens of parking lots, driveways, multi-level parking garages — not to mention valet parking services for each main building.
Buildings are numbered differently, depending on which side you are on, so 55 Lake Avenue North is really four (five?) buildings, depending on your approach and there’s a lot of driving around in circles to discover what could be considered “the front door” for wherever you are trying to go.
Maybe that’s the front, but it might be a different building. You won’t know until you’ve parked, gone inside, talked to “Information” and had them explain where you might go next.
I can’t walk a long way and I won’t use a wheel chair yet. The only place I always use a wheel chair is at the airport. Everywhere else, I walk. Slowly and painfully, with a lot of wheezing and whining, but I do it anyway. To park, we use the valet service because it’s at the front door and by the time we get there, we’re both bushed.
It used to be free, but now it cost $7, which is hefty for this area. That’s only a bit less than they charge in Boston. They probably use the same company, especially because all the hospitals now work together in large groups. This is better for us, the patients because if the specialist you need isn’t here, there’s an affiliate that has exactly the one you want. Most of the time.
The real craziness starts when you get inside and need to close in on the specific office or area where your doctor and the machinery he/she uses is located.
The Lobby is always in the middle of the building. There are maybe a dozen elevators that go to different levels — up and down. To get to Neuro-Diagnostics (Neurodex), I needed Elevator B, down two levels to Level A, then a long slow walk around corners and through a maze of hallways.
The woman ahead of us in the information line was Chinese or maybe Korean. Regardless, she was probably my age or a little older and her English was not too good. She was having a lot of trouble comprehending Elevator B and going down.
“Down?” said the elderly woman.
“Down,” assured the information lady. The poor woman looked so lost. I wonder if she ever found her way. If she had waited, we could have gone together, but at that point, I didn’t know I too needed Elevator B and down (two stories) to Level A, followed by a long complicated walk through many hallways.
We eventually found Neurodex, but there was no appointment. This was the “short” day at the my own doctor’s office, so everyone there was gone. If I were serious about omens and portents, I would assume The Universe was telling me to forget the whole thing.
I also took some pictures. Because I was outside, had a camera. Figured I should do something worthwhile. Then we went grocery shopping. Because — why not? Got gasoline, groceries. I remembered how much I love the way our town looks in the snow. I know everyone complains about the dirt at the edges of the road, but I love it, the way the dark snow in the road moves up into the white piles of it all over the Common. Every building is topped with snow.
I just wish this had happened in January when I was ready for it. Oh, wait. It did happen in December, January and February. Sometimes, it’s a long winter season.
What do you know? He’s allergic to Lisinopril — a blood pressure medication. Now he’s on a short run of Prednisone to bring down the swelling in his face and throat and probably all that interior stuff. Who’d have thought that was the problem? He’s been on this same medication for at least 20 years.
Our bodies are a moving target. Just because a medication has always worked, it doesn’t mean you can’t develop an allergy to it tomorrow. One day, I showed up allergic to penicillin — and this put me on the “NO NO” list for all related “cillins.” This can get quite complicated when I need antibiotics.
Getting Garry “doctored” was very much the central theme of the day. We actually forgot to do Bonnie’s eyes this morning, something that’s so much a part of our ritual I didn’t think it was possible to forget it.
On the plus side, our usual doctor was not in and Garry discovered the other doctor in the practice is a fan. Watched him for all those year, through all those Boston crises.
So his problem will be cured, he got a lot of attaboys, and it is just as well we didn’t go traveling this week. Go figure, right?