Taking up where we left off…

Because of all the waiting and gurney-fetching, we didn’t arrive at the hospital until around 3:00. (I think I called at 1:45?) We sat in the hallway a while longer and I finally said to the firemen, This is ridiculous that I’m tying you up here just because you need this gurney. Find me a wheelchair and then you guys can go do good somewhere else! So somebody went and got one of the large-size wheelchairs with the fold-up arms, and I got down off the gurney and sat down on it.

Keep in mind that I am already soaked on my front side from being wheeled out and then in through pouring rain, and when I sit down on the wheelchair, it is WET. So I quickly stand up again and say Um, could we get a towel please? Then someone notices there is water all over the floor. Apparently the chair was SO wet that when I sat down on it, the excess flew everywhere. So they got towels for the seat and a mop for the floor and then I sat on the towels and one of the firefighters wheeled me to the emergency room.

I should say that while still in the hallway with the firemen, I spoke with the intake nurse, who listened to my lungs and heart and took my temperature, and I said to her what was going to be my litany for the day: Lipoedema, stage four; acute lymphedema; convulsive chills over a period of hours at a time for multiple days; slight tightness in the chest and a cough; a little nausea. She wrote it all down.

So…the firefighter wheels me into the emergency room, and the woman at the desk there asks him what’s the problem. Asks HIM, not me. The patient. The person sitting in front of her who made the call in the first place. And he says “flulike symptoms.” And she writes it down. I say, No, it’s not just that, I’ve been having convulsive chills and I also have two serious comorbidities. No one even heard me, I don’t think. At least, they acted like no one had spoken. Someone came up and wheeled me into a corner and said someone else would come get me for a chest xray, and left me sitting there.

There were about 35-40 people in the emergency room. It was really crowded. The first thing I did was ask one of the processing nurses who was seated near me to bring me some kleenex and a mask, and I gave my nose a good blow and then put on the mask for the day. I am virtually homebound, and the only people I ever see are my cousin and my cleaning lady, so being abruptly exposed (while already obviously sick with something) to a room also full of sick people was not ideal! Some people were wearing masks, some were not, and some were doing that idiotic thing of wearing it as a “chin sling.”

Ten minutes later I started to shiver (remember that I was wet from the rain and, of course wearing two things guaranteed to prolong that—polyester pants and a sweater!) and asked the nurse for a blanket, which she brought. I wrapped that around me, but the shivering started getting serious so I asked for another and covered up the front half. Finally, when I realized these were the convulsive, infection-driven shivers, I asked for a third and put it over my head. The nurse happily kept bringing me blankets but didn’t question the fact that I was visibly shuddering from cold.

In about an hour, they came and got me for the chest x-ray and brought me back again.

Then they came and got me, took me into the adjacent hallway to a blood-draw station and took out a few tubes of mine. And brought me back.

A while later they wheeled me into a room and did an EKG. And brought me back.

In all these encounters I only saw the specialty technicians who perform those tests. No doctors to be seen. But I kept being a chatty Cathy about why I had come in—the convulsive chills and tight chest—and why that was particularly worrying—the co-morbidities. None of those techs could have cared less…but of course it’s not their JOB to register that information, it’s a nurse’s, or a doctor’s. But I didn’t see one of those.

I then waited a long while and someone came to get me to take more blood! I said Why? She said it had something to do with the heart, that the other blood draw was for other stuff, but if I wanted to wait until I got into a room, I could. I said, yes, that would be great, and she went away. Then, about half an hour later, the nurse comes over and says, Did you refuse to do the blood draw? I said no! The other woman gave me the option to wait until I got into a room and I said that would be great! She said we don’t even know yet if we HAVE a room for you, you need to do the blood draw. So I said fine! I’ll do it whenever you want, and they took me for that. And brought me back to the emergency room.

By this time, virtually everyone who had been there when I arrived had been moved through—either sent upstairs to be admitted, given drugs and observed for a while, or given a prescription and sent home. And I was still sitting in my corner, in pain. When I am at home, I never sit in one position for longer than two hours maximum, because my knees freeze up, my legs swell up, and the next day will be worse. It is important for someone with my conditions, both lipoedema and lymphedema, to stay as active as possible or lose my mobility. At this point it was around 7:00 and I had been sitting in this wheelchair since 3:30. With the footrest down and my feet on it, it scrunched my knees up tight, so I kept swinging one foot and then the other to keep my legs from going to sleep; but that meant the fibrotic tissue behind my knees was being aggravated by the hard surface of the seat. With the footrest up and my feet flat on the floor, I got a little better circulation, but too much of that and my feet start to burn on the bottoms. So I kept alternating, and I got up a couple of times and stretched, and I got up once and tottered to the bathroom.

When I came in that afternoon, my temperature was slightly elevated (99.9, which is higher for me than some, since my regular temperature usually runs low, at about 97.9), so they gave me two Tylenol with a small cup of water. I hadn’t had anything else to eat or drink since the breakfast burrito at 10 a.m. that morning. I asked the nurse for water a couple of times, but that was all I had all day.

Finally, at 8:30, a doctor walked into the room and called my name. I stood up to talk to her; she came over and said brightly, Well, your chest x-ray is clear, your blood work is normal, and your EKG shows no problems. It’s just a virus. I’m sending you home.

I said Wait, do you know that I’ve been having convulsive chills for five days now? Last time that happened I had a really bad infection! I thought they would at least keep me overnight. I’m worried that… She cut me off and said It’s a virus! I’ll give you a prescription for something to take at home. I was so exasperated (and exhausted) that I got a little snippy and said, Well, good luck with that! I have no way to get home. I came in an ambulance and there’s no one to pick me up and I can’t take an Uber because of my legs. She said, Someone will come talk to you, and she walked away.

I had never met this doctor previous to that three-minute interchange. She had not asked me one question about myself, my symptoms, or my obvious conditions. She didn’t examine me at all. She had treated me like a test case, as in, I’m going to look at these tests and, based on that, decide your status with no further input.

I think there were two things going on here. First of all, the emergency room was overwhelmed. I later found out that all the caregivers at Kaiser Permanente are on strike, so all the non-Kaiser facilities in the city are being inundated with the people who normally go to Kaiser. So I’m sure everyone present on the Northridge Hospital/Dignity Health staff was overworked and stressed out.

But second—and again, people may think I’m being a one-note paranoid—I think that my conditions were not addressed because no one sees them for what they are. They see a 400-pound woman who walks with a cane and has massive lymphedema in her legs as a self-indulgent obese person who has abused her body and probably has diabetes, and now that the damage is done she wants to be “fixed.” And people resent you for that.

If you know nothing about lipoedema, either the condition, the symptoms, or the signs, then that’s going to be your assumption. And despite my constantly saying “I have lipoedema! I have lipoedema!” like some crazed jumping jack, people either don’t know what it is and don’t care, or brush it off as an excuse. Many people who have had no experience of this in their families think, when you say “genetic fat-storing condition,” that you’re just making something up.

Anyway, at that point I just gave up. I probably should have thrown a loud and massive tantrum right in the middle of the ER and demanded that someone actually talk to me, examine me, and take me seriously, but I felt like I had been doing mini versions of that all day long with no success, and all I wanted to do was quit sitting there and go home. Unfortunately, that took awhile.

The ER secretary had to call six different medical transport companies to find someone who would come and get me and take me home. Apparently, if you are “mobile” (what a joke) they won’t take you, you have to be incapacitated. It didn’t matter that I can’t get into a car unless it and I are at the perfect angle and the seat is an adequate size and it isn’t too tall or too short. They weren’t doing it. But one service (and I will tout them here) called LifeLine-EMS said Sure, we don’t say no! The only problem was that it took until 10:00 to get down the list, and they could pick me up at 11:00.

They arrived at 11:15; their gurney was wide enough and still had reassuring bars (that raised and lowered!) to hang onto, and they whisked me into their ambulance and we got going. One of their crew members sat in the back with me and interviewed me for all the information she needed to turn in on her report. After she was finished, I realized how long we had been driving and said Hey, where are we? because I only live five miles from the hospital, we should be there by now. The driver said, This can’t be right, and asked me to repeat my address twice. Apparently the dispatcher had added a digit onto my street number, and at this point we were about 10 miles in the opposite direction, almost at Topanga Canyon Road. So, he turned the ambulance around and we drove 15 miles the other direction to my house.

They figured out a clever way to get me off their lovely gurney directly onto my porch rather than me having to climb the three steps, which is a good thing, because just making the final one into the house was plenty, and I arrived home at 12:15 a.m. on Tuesday. I peeled off all the damp germy clothing I’d been wearing all day, washed up and changed, ate a bowl of cereal, and collapsed into a deep sleep.

Next morning, I woke up feeling pretty bad. My knees were killing me from sitting on that hard wheelchair, and I had sore muscles too. But Walgreens texted that my prescription was ready at 9:45, so I put in an order for delivery and waited for it to arrive. And waited. And waited some more. Finally I called them, only to find out that they use DoorDash as a delivery service, and don’t even call them for pickup until 4 p.m.! The prescription is guaranteed to get to you by 8:30. For this I paid a one-day delivery fee. It was technically still within the day, but I was anxious to get started on whatever the doctor had prescribed, so I could start feeling better.

While I was at the hospital, I told the admitting nurse that one of my symptoms was a little cough. She asked, How bad is it? and I said it’s nothing, I’m barely noticing it. It’s not like bronchitis, not down in my chest, just a small cough. I even demonstrated it for her.

The prescription arrived at 7:00. It was cough medicine.

This has gotten long, and I need to elevate the legs. I’ll finish off with part three tomorrow.