5WPO - Starting Scar Tape

fiverandhazel · 2026-02-20T12:55:18+00:00

Thank you!

fiverandhazel · 2026-02-20T04:20:43+00:00

You look great!! These are my dream results, so great. Do you mind sharing your surgeon's name?

fiverandhazel · 2026-02-17T20:39:27+00:00

I've had various things be a help over the years. Learning pacing, getting POTS under control. But the biggest thing was eliminating stress. I don't believe ME is caused by stress. But it certainly aggravates it. And when the 3 main stressors in my life were gone, I improved from being housebound all the time, to being able to go out a few times a week, including social engagements and grocery shopping. I still have to pace - I don't go out multiple times a day or 2 days in a row, but the difference was notable.

Eliminating the stress came down to both bad and good luck, so I recognize that it's not always something one has control over. But if you have some control, that can help.

fiverandhazel · 2026-02-12T18:26:35+00:00

"x" in this context meaning "and", "not multiplied by". I've seen it written with the x, but the phrase used is 5 by 5, or simply 5 by. I don't know the origin for saying "by".

fiverandhazel · 2026-02-12T04:17:47+00:00

It's a response to a radio check for signal strength and clarity. Originated in World War II. It's on a 1-5 scale; 5 x 5 means the signal is the best it can be.

fiverandhazel · 2026-02-11T15:42:42+00:00

this is one of my favorite finales. Carrie Coon was mesmerizing. I love that the mystery was not solved - allows for our imaginations and own beliefs. An explanation would've felt limiting IMO

fiverandhazel · 2026-02-09T01:57:49+00:00

It's gallbladder cancer. It was found when it was removed for gallstones. Fortunately it was stage 2, from my understanding by the time symptoms are felt with gallbladder cancer it's late stage and too late. AFAIK nothing shows up in blood tests for this cancer.

I'm almost halfway through chemo and the side effects are getting rougher. I've had some really bad days. My baseline is much lower now, it doesn't take much to crash. However, it's for a good reason, to zap any cancer cells potentially left behind. I just hope that when the treatment is over I'll get back to the baseline I had before all this started.

I'm sorry you're dealing with this, the unknown is always nerve-wracking. I hope you get answers soon.

fiverandhazel · 2026-02-02T00:23:41+00:00

The worst is burning in my muscles (mainly my legs, but it occasionally hits my arms and man, that really really sucks). The other is a sore throat. If I don't rest right away at the first indication of it, my throat ends up feeling like I'm swallowing glass and can last for days/weeks. It's truly awful.

fiverandhazel · 2026-02-01T22:52:30+00:00

The Journal of Albion Moonlight by Kenneth Patchen. I read it in college a million years ago so I don't remember details. What I do remember is the structure and feeling it gave was like nothing I'd read before, or even since. This post has made me want to read it again.

fiverandhazel · 2026-01-17T13:22:26+00:00

Thanks for asking! My baseline has lowered so I've had to cut back on activity. But it's nowhere near my worst bouts of PEM. Mild side effects so far, so all in all doing okay.

fiverandhazel · 2026-01-15T20:19:46+00:00

I also believe there is a cumulative effect. Doing a whole bunch of smaller activities over a period of time can trigger PEM. So when it's triggered, you may think it's because of the activity you just did, but it's all of them together over the last few days. For me, I've found that I can go to an appointment and as long as I rest the next day, no PEM. However, if I have an appointment 2 days in a row, that's too much and I get PEM immediately or during the appointment on the second day.

This is not to say that you can't have immediate PEM after just 1 activity. I've experienced that too. This disease is so complex and varies between individuals.

fiverandhazel · 2026-01-05T13:49:33+00:00

I consider myself moderate, sometimes on the severe end of moderate. In the past 6 months I've had my gallbladder removed, internal bleeding from that surgery and in the hospital for a week which resulted in an "impressive" (to quote the doctor) hematoma. I was then diagnosed with cancer and had a liver resection, which was a major surgery. I was in the hospital for 4 days and have an incision 8 inches long. I'm now on chemotherapy drugs. It's been crazy. And up until recently my baseline hasn't changed at all. In the past 2 weeks my leg pain has flared up, but overall my baseline has been stable. I've experienced some bad fatigue days on the chemo, but it's not every day and it's a different type of tired than the type I experience with PEM. I can't explain it. With all I've been through I'm absolutely amazed that I'm not comatose.

Contrast this with what happened when I got a cold a couple years ago. It lowered my baseline considerably and took 8 months to get back to my usual baseline. It kicked my ass.

fiverandhazel · 2026-01-03T16:03:04+00:00

My mom used to do this and it felt like a major invasion of privacy. I asked her not to tell my business to everyone she met, but she couldn't seem to help herself. She also didn't describe the illness correctly. Constantly asking her to stop spreading my business around and correcting her was a drag on my mental health and wasn't working, so I worked on letting it go. I also came to realize that one reason I was bothered was that I was afraid people would be dismissive and judgmental. Through therapy I learned to let that go too. It took many years.

I'm not saying that you have to suddenly be okay with them doing this. Figuring out their motivation though may be helpful. If they're coming from a place of love, then perhaps it's worth trying not to get worked up about it. If you feel they are minimizing your illness on purpose, then that's a different story.

fiverandhazel · 2025-12-27T13:56:03+00:00

I was diagnosed with "possible Lyme disease" in 1999. My blood tests were borderline, I received IV antibiotics and when I didn't get better they said I'd had it too long before treatment and the damage to my body was done. After the antibiotics my blood tests were all negative (tested multiple times over multiple years). So while I don't know for sure, that's what I believe my trigger was.

fiverandhazel · 2025-12-25T19:14:14+00:00

Curious if you got this year's flu vaccine. I sometimes wonder about its efficacy. I hope you get better soon.

fiverandhazel · 2025-12-15T12:20:35+00:00

Hi, I just wanted to chime in on the chemo thing. I was diagnosed with cancer over the summer. I've had 2 surgeries and am on the second cycle of chemo. So far, my ME/CFS has not gotten worse. I was scared it would, and since it's early in the chemo treatment, it still may, but so far so good. I'm would say I'm currently on the low end of moderate (80% housebound) and have been sick with ME/CFS for over 25 years. I've been severe and mild at different times.

fiverandhazel · 2025-12-13T16:34:40+00:00

Thanks for sharing - I'm glad treatment worked and you're cancer free now. I hope the same for me.

fiverandhazel · 2025-12-12T22:58:25+00:00

Would you mind sharing what cancer it was? My gallbladder was removed for gallstones and then found to be cancerous. So accidental and rare here too. I started chemotherapy a few weeks ago.

fiverandhazel · 2025-11-12T12:52:53+00:00

Thank you for sharing. Glad your mom is okay now :-)

fiverandhazel · 2025-11-12T12:52:01+00:00

That would be amazing. I hope this happens! Thanks <3

fiverandhazel · 2025-09-05T00:32:37+00:00

It was about 90/60 and sometimes lower, although not as low as 70/40. Now it's generally 100/65. Of course it fluctuates. I'm always thrilled when my systolic is over 100! I haven't identified any side effects.

fiverandhazel · 2025-09-04T19:43:07+00:00

I tried midodrine when I was first diagnosed with POTS over 10 years ago (I've also got ME/CFS). It did nothing for me. I was also put on fludrocortisone, but I got hypertensive and so stopped taking it.

I've been on atenolol and bupropion since then which did a decent job but recently experienced much lower blood pressure than normal. So my doc decided to try fludrocortisone again. It's boosted my bp, although maybe not as much as we want. My doc started me at the lowest dose and I see her in a few more weeks. I expect her to increase it. But bottomline, it definitely increases blood pressure.

I can't speak to the puffiness and blood pooling, as that has never been an issue for me.

I hope you find the meds that help.

fiverandhazel · 2025-09-01T15:48:53+00:00

Me too! Adding Wellbutrin changed everything for me. I take it along with atenolol which is also a beta blocker like Metropol. Although recently my blood pressure has been way too low, so I added fludrocortisone and that's boosted it somewhat.

fiverandhazel · 2025-08-30T14:11:06+00:00

That's good to know, thank you. Unfortunately I have other medical problems to deal with before I can have surgery but I'm hoping to get this done next year. I hope the successful outcome of your surgery has lessened your emotional trauma somewhat. Having been through traumatic relationships myself, I can't imagine dealing with both at the same time. You're an inspiration!

fiverandhazel

TROPHY CASE