I have limited energy, so I’m going to get through this as fast as possible.

I remembered on Wednesday (when I was feeling worse) that while the firefighters and I were waiting around for the large gurney, one of them commented that they had a unit called Advanced Practitioner Team who would visit and assess you at home and were able to prescribe drugs. By this time I was completely convinced that I had cellulitis. And if anyone had LOOKED at me when I went to the emergency room, they might have figured that out, too, although it did take a couple of days to visually manifest. I discovered I had a large blister filled with lymph fluid on one ankle and that leg had turned kind of beet-colored, and on the other leg the lobe behind my knee (fibrotic lipoedema deposit) was bright red and hot to the touch.

I called the local fire station and spoke with the captain there, and he said he would contact the team and someone would get back to me. At the end of the day he texted to apologize; he had finally tracked them down, but they had just gone off-shift (it’s not a 24-hour service like regular firefighters), but they were back on shift at 6:30 a.m. and would call me.

They called me at 8:00, and came to see me. There are three members to the team, one of them a doctor. They are the one and only bright light in this story. They are fantastic. They took all my vitals, heard my sad tale, questioned me extensively about my conditions and confirmed that yes, it is cellulitis. I am allergic to penicillin, so they gave me a prescription for doxycycline, to be taken twice a day. But they cautioned me that if it didn’t seem to be working within a couple of days, I should either get my primary care doctor to send home health care to give me IV antibiotics, or get to the hospital. The other sign would be (as I knew it was before I went to the hospital in the first place) if I was still having convulsive chills.

I took the pill that night (Thursday), and Friday morning and evening. Sometime early on Saturday morning I woke up with the chills, and they lasted for what seemed like hours. I was so out of it mentally, it didn’t even occur to me to take a couple of Tylenol. I finally fell asleep again, but that began my “day of insanity.” I woke up at 10:00 in the morning because the phone rang—I said “I’m trying to sleep” and hung up. I had it in my mind that I needed to get up off the sofa and go to the bathroom…but I also somehow fixed it in my mind that I needed to take my bottle of lemon water and my magnesium pills and the bottle of Allegra with me to the bathroom so I could take them in there. It was very important! (Clearly delusional.)

I spent the entire day in what I can only call a fugue state. I would sit forward on the sofa, rocking back and forth as preparation for heaving myself off the sofa; then suddenly, a few minutes later I would open my eyes, realize I had drifted off, think at first that I had been to the bathroom, and when I figured out I hadn’t, I would start all over again. This lasted from 10 a.m. to 2:00 the following morning. I never made it off the couch. Which meant that I missed two doses of the drug, because I had logically put it on my kitchen table, where I eat, since I had to take it with food. Bad mistake.

I finally decided to take some Tylenol, immediately felt cool and sweaty, and became lucid. I called my cousin (fortunately for me she hadn’t gone to sleep yet) and asked her to come. She’s living in Simi Valley right now, so it was going to take a while, and we agreed I should call 911 and go to the hospital, the way the guys on the team had said, so I called them, and soon I had the seemingly requisite five guys in my living room. Kirsten arrived about 10 minutes later.

I said, Before we talk about anything, I have to get up and go to the bathroom. I’ve been trying to get up to get there all day. Can you please help me up? Their answer was no, I needed to stay on the sofa. I said Listen, I have to go! and their answer was that I was just going to have to hold it. I said nope, doesn’t work that way, I have to go now. One of them actually begged me to not get up, because if I fell in the bathroom, there wasn’t enough space to pick me up again. I said, I’m doing it, so you can help me or stand aside. So they pulled me up, and I was initially a little wobbly but I insisted that if they’d just let me stand there a minute and find my feet, I’d be fine.

I made it to the bathroom and did my business with a fireman standing in the hallway with his back to me, and the door open. A memory to cherish. I got up, washed my face and brushed my teeth, and went back to the sofa.

The senior firefighter said to me, Listen, I’m not sure taking you to the ER is the right thing. Honestly, it’s a madhouse, as you experienced on Monday, and since you are lucid, able to walk a short distance, and not bleeding or having a heart attack, the same thing will happen to you; they will put you in a wheelchair and push you off to the side until they deal with the more urgent cases. I said, I have cellulitis! That could kill me! or I could lose a foot or a leg. You don’t consider that urgent? He said it’s not me, it’s just emergency room protocol, the way they do triage.

I was honestly kind of outraged. If the ER hadn’t neglected and dismissed me on Monday, we wouldn’t be having this discussion almost a week later, because I would have had the drugs I needed. But I also didn’t want to repeat that nightmare experience. He said Look, you have your cousin here; she can give you your meds and bring you something to eat. I suggest you stay at home, take the drugs, and see how you feel.

I said, You know that your Advanced Practitioner Unit told me that if the chills came back I should call 911 and go to the hospital. He said, I don’t know what to tell you, ma’am, I’m looking out for your comfort. You’re already feeling ill without sitting in a drafty room for five hours waiting to be seen. So…I stayed home.

Kirsten made me some toast and I ate some of that and took the drug. She brought me some bananas and some trail mix if I needed more food for the next pill. She stayed until after 5 a.m. and then went home to sleep. I woke up the next day around 11 a.m., ate a banana and took another pill plus some Tylenol. On Sunday evening I was feeling pretty bad again, and also hungry for more than another banana, so I called Nancy, the woman who cleans my house. She lives within three miles of me, and turns up when I need help, and I try not to call her unless I’m desperate. Yep, this was the moment.

She came over, dealt with various messes, helped me get up so I could go to the bathroom, then made me a bowl of soup and brought it to me on the sofa. I took another pill and ate about half the bowl of soup, and I was done. I was sure grateful for the visit.

Today I woke up feeling a little less fraught. I took a couple of Tylenol right off, waited about half an hour, and then got myself up after a couple of tries, and made it to the bathroom. Then, surprise! The Advanced Practitioners called and said they were in the neighborhood and could be here in 10 minutes. They came in and assessed things. I told them how I had missed a whole day’s worth of the medication, and had called 911 but then not gone. They were kind of mad when they heard that the firefighter talked me out of going. After they took all my vitals and I showed them the various problem sites (ankle blister unchanged; knee slightly less red and definitely less hot, but still sore), the team leader told me I needed to be a better advocate for myself.

I said, I honestly don’t know what to do to get people to take me seriously. They see fat old woman and make an immediate judgement. When I went to the ER the last time, I kept chanting “Lipoedema Lymphedema Convulsive chills” at them like a damn mantra, and no one ever even examined me!

He said we’re going to leave you here for now as long as you’re sure you can get up and take your drugs and feed yourself. But if you feel the need to go, you call them again. We have a roster of habitual 911 callers, and you’re not on it. I said, I’ve called 911 three times in my life, and two of them were this week! He said I should tell the people at the ER, I have two serious conditions that have negatively impacted me. I have contracted cellulitis; it is progressing; and I am a failure with oral antibiotics. What I need from you is an exam, some wound care, and an antibiotics IV. I said okay,

After they left, I got up and went into my office because I was expecting a phone call from an advocate service that is paid for by Medicare. I have an appointment tomorrow online with a doctor, and am hoping I can circumvent my primary care physician and get some kind of in-home medical visit with IV antibiotics. She keeps sending me to the wrong home healthcare company (they don’t do in-home IV), and that’s when her assistant calls me back after a day or two. I can’t count on her.

I then made it to the kitchen and made myself something to eat, then back to the sofa. I got a call from a woman who identified herself as a part of the Advanced Practitioner group; she’s not in the field with them right now because she’s doing research on how better to help people. She is usually partners with the team leader who has been to see me twice, and said that the minute they left my house, he called her and said We have to help this woman! So she’s looking into some stuff and is going to call me back tomorrow. (One of the things is, she may have found a lipoedema specialist for me in the Valley!)

Anyway, here I am sitting at home, taking my medication and a lot of Tylenol, and hoping at some point this pill kicks in and does its thing. Hoping I will be in okay shape by Friday to go to my new primary care physician, to whom I was referred by UCLA. Excuse my language, but what a shitshow this has been. And it’s not over yet.