Category: The Best Healthcare in the World

Under pressure

~ susie ~ 2 Comments

I forget whether I mentioned my blood pressure is through the roof? Anyway, turns out the diuretics that have me running to the bathroom all night have also been washing away my body’s potassium — which is how I ended up in the emergency room all day Friday.

I had no idea what was wrong; my stomach hurt, I wanted to throw up, and it felt like the room was spinning every time I stood up or sat down. So off I went.

(Humorous aside:  My doctor was defensive when I asked him why he was wearing a Yankees surgical cap. He said, “Can’t we both agree that we hate the Mets?” I had to admit, he was right.)

Turns out lack of potassium affects pretty much everything: muscles, nerves, organs — which is why I was so dizzy and fatigued all week. For the next two weeks, I have to take a potassium drink twice a day ($62 with GoodRx. I’m still not feeling normal, so forgive any typos.)

So I went and found a salon that was open on Mondays and got all my hair chopped off. It was pretty long, but summer is coming and I felt like making a clarifying statement — which is, damn, I’m tired of all this bullshit.

Now I have to get kidney function tests today. I am annoyed at all the attention this demands. And I am very, very tired. No, I don’t know what my blood pressure is, I stopped taking it. If I’m doing everything they tell me to do and I’m not getting better, fuck it.

Princess Kate has cancer

~ susie ~ 1 Comment

There, now we know. Leave her alone.

When I had cancer, I didn’t tell anyone in my family because I didn’t have a biopsy yet and I didn’t want a lot of people second-guessing. It’s exhausting.

Then people were upset when I turned down chemo and radiation. I knew enough to know breast cancer is often overtreated, and I did a LOT of research before making my decision. My tumor was fairly rare; the only two reports I could find in the medical journals were one woman who got surgery and no other treatment, and she was still alive 20 years later. The other refused any treatment at all, and she was alive, too.

So I got a second opinion from a top specialist at Penn, and I assured her I didn’t have a death wish, I just didn’t want to be overtreated. She agreed with me and told me as long as I came back for a checkup every year, she didn’t see it as a problem.

Whatever choices people make, it’s private. I have a friend right now with a rare cancer, she and her husband are going all in on alternative remedies she found on Facebook. (Don’t get me started.) She’s also bitter about Big Pharma. But I stopped arguing the finer points with her because she’s had three years of grueling treatment, and the final decision is hers.

 

 

 

 

Pain

~ susie ~ 1 Comment

What I learned through my recent surgery is that once you’re out of the hospital, doctors won’t really treat pain. I was told to take two extra-strength Tylenol four times a day, when finally I said, “Why am I destroying my liver for something that doesn’t even work?” Oh no, my surgeon told me. It was “synergistic” with the other drugs. It was part of their special pain modality.

I don’t think anyone should be in charge of prescribing for serious pain who hasn’t gone through it themselves. The fact is, opioids work. Doctors should of course be careful with them, but I have no history of abuse and no risk factors. I was taking a minimal dose in the hospital.

And then they sent me home with ten pills. It’s really hard doing physical therapy and bending things that don’t want to bend when you’re in severe pain. (Mind you, I have a very high pain threshold. If I say it hurts, it hurts.)

But the pendulum has swung all the way from handing pills out like candy, to pinching them out as if they were grains of gold. Crazy.

Progress report

~ susie ~ 4 Comments

I went back to aqua therapy this week, and it’s already making a huge difference in my ability to move. Everyone keeps telling me how well I’m doing, and all I can think about is how much farther I need to go. Oh well. (I live in fear of the dreaded MUA — manipulation under anesthesia, where the doctor goes in and tears your scar tissue open because you don’t have the expected range of motion.)

The PTs in the rehab center told me they don’t usually get patients who are this engaged in their recovery. It’s more common that patients get the surgery and believe their job is done — when it’s only just beginning. I know what the PTs mean; I met some of those people in aqua therapy. They constantly complained about how the surgery didn’t work and how long they’ve been in pain — while they walked around the pool talking on their cell phones. I mean, there were some people who I never once saw do actual exercises. (That said, the doctor did not give me enough pain pills, and that was rough.)

I, on the other hand, overprepared. Read lots of books, watched lots of rehab videos, asked lots of questions. When I started aqua therapy again, my therapist told me she couldn’t believe how well I was doing. (Which was what I told her all along. I think she just assumed I would follow  the same timeline as her patients who didn’t take an active role in their recovery.)

So far, it’s paying off.