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Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Blog entries by Andrew
I take sleeping pills, but they are not enough. So I try different supplements. I'm trying out a new sleep supplement and so far it seems to help. The product is Sleep3. It's not cheap. But I only take half a pill so I'm not wiped out the next day, and that reduces the cost. Ingredients are very...
Amazing how one's appreciation shifts when disabled. I now look at a breakfast delivered from McDonalds as a special treat. Although part of what makes it a special occasion is all the fees I pay to get it delivered almost double the price. But what the heck. I don't do it often.
And as for...
For Christmas I received a pair of flannel pajama bottoms. I've but them to great use, but not for sleeping. When my legs get cold I slide them over my jeans. Sort of like wearing a flannel shirt over a regular shirt.
It's raining
it's pouring
but my life’s not boring
I keep my head
I rest in bed
and hope for a better morning;
.
If I looked as bad as my driver license photo, my doctors would believe how sick I really am.
It's always gratifying to accomplish something. What used to seem like a tedious chore, has now become a great accomplishment. And today it was going to the ATM. And I had to get there because I had some checks here that needed depositing. And I didn't want them to expire, as has happened to me...
These are the blog posts I wrote to help me answer questions I often see asked. Plus, there is information included in replies to my posts. I put them onto this unified list for easier linking by a local support group.
Managing your medical records
Educating your doctor and you
Exercise...
For years I've thought in terms of warm shirts and jackets. But I noticed lately I feel better if there is a blanket over my legs. Thermal underwear don't agree with me, so today I tried wearing pajama bottoms under my pants. The extra bit of insulation is making a big different in the way I...
I'm pretty sure I mentioned this in the PEM subforum, but tonight I feel compelled to blog about it. Maybe it will help to blog this. But I just had to get off the phone after sixteen minutes of talking. I was wiped out. This has been a pattern for me for months now. I'm on an anti-androgen drug...
In the song "Old Man River" is a line that says "Tired of living, but scared of dying." This illness has taught me how that feels. The good news is I don't feel that way all the time.
It's so nice when something good happens in a life that seems like never-ending bad news. But this time it ended up okay. Usually when cold weather comes on I develop a cough that just goes on and on for months. I feel miserable and doctors won't treat because they say I have no sign of...
I got one of those printers that also copies, faxes, and scans. This has made my life so much easier. For example, when my doctor got my biopsy results he called me and then faxed them to me right away. I called the place that has the samples and asked them to fax me a form so I could request...
I was diagnosed with prostate cancer about 8 years ago and because it was low-grade I entered a program of active surveillance. But my PSA recently shot up and a high power MRI showed problems. I go for biopsies Wednesday to confirm this and see how aggressive it is.
Some people are inclined to...
Modern clean interfaces cause me perceptual problems because I find it hard to tell where the webpage ends and the browser begins.
I could describe my odyssey with browsers, but instead I'll jump to the bottom line. I started using Vivaldi browser a few days ago. It allows me to change colors...
Like many of you, I find it very hard to sleep. In the morning I felt like I got only 1 hour of sleep. But that changed when I started taking prescription sleeping pills and melatonin. With that combination there were many nights I felt like I got real sleep and enough sleep.
For the last few...
I don't know what it's like were you live, but the doctor offices out here keep it very cold in the exam rooms. I always bring a jacket, but at my age my legs can't take the cold. So for my last visit, I took a mylar space blanket. I don't know if you have seen these, they are very thin and...
When I was treated for cancer, I had to go for radiation treatment five days a week for seven weeks. In addition, I had to go to a different office once a week for chemotherapy. This was very hard on me, and made worse by my ME/CFS. The most difficult was dealing with orthostatic intolerance...
Life is not fun if you can’t sit up without feeling like you’re going to pass out. And if you sit for a while you start to get a horrible body feeling like something with your body is horribly wrong.
Life is not fun if a friend visits you and you have to ask them to leave after 15 minutes...