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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Blog entries by CedarHome
So, five years ago in February, I got sick and never really got better.
Ever since I have dreaded February.
I wanted SO BADLY to just stumble onto the THING that would flip the switch BACK and make all this go away.
Yep, there is not that thing, not that I haven't tried a zillion of them...
So last year I had enough energy to try this whole AUTOIMMUNE PROTOCOL (AIP) eating plan.
Spring comes, I talk to a nutritionist and it appears I might have an oxalate issue. Spend some time reading up on that and it is not pretty. But, I DO have mystery kidney stones and I do have the genetic...
Back in March I was determined to finally track activity and attempt to stay within energy envelope for a change.
WHAT A NOVEL IDEA.:bang-head:
I ordered
a) simplest possible Fitbit
b) Corsense HRV monitor (fingertip)
The fitbit was fun in a gamey kind of way- - it was constantly reminding...
Short version:
I started antihistamines again and feel better DUH!
Months of misery provoked by self-inflicted med changes are always the most fun.:bang-head: :xpem::whistle:
Story version, and sorry for all the little emojis, I'm feeling exuberant today and they break up the text:
So! A...
I'm still really really dragging after Moderna #2. (3+ weeks out). I worked 2 part time days last week after taking the entire week before off.... (we are supposed to be back in the physical office even though only 1/3 of employees are vaccinated, go figure) and then completely crashed on...
Spurred on by this article
https://www.healthrising.org/blog/2021/03/04/hannah-pacing-heart-rate-monitoring-chronic-fatigue-syndrome/
I, like many others on the HRV forum, ordered a new HRV monitoring device.
Corsense.
Previously I was using a WAHOO tickr chest strap and Sweet Beat app but...
Hey! I just noticed that I posted something on 2 year anniversary so it's a good comparison.
Here's the 2 year notes (first) followed by 4 year update
On the upside:
- I can work 10-20 ish hours/week // Now 20-25 hours/week
- Sometimes I can walk //I have phases when I walk every day, but...
I had Moderna #1 (offered because of where I work) and spent about 2 days in bed. Then about 7 more days dragging and barely making it through my part time work days. Nausea and fatigue were the main symptoms.
I had a more severe reaction than all the elders I know (family members) :rofl...
Ugh I have to physically go in to work tomorrow. (been working about 0-15 hrs/ week mostly all from home.)
Will anybody but me be wearing a mask?! :alien:
Anyway, here's my update:
1. Still slowly tapering cortef - on the way to 2.5 mg down from 10. I'd love to be done before fall weather...
HPA axis dysfunction. Some doctors have heard of it, some haven't.
The ND I was working with said there's no evidence of HPA suppression with hydrocortisone doses under 20 mg/day.
I think I took 20 mg briefly but mostly stuck at 10 mg. 20 seemed risky.
Then I started skipping doses with no...
So I was on an upswing for a while. Famous last words.
I was getting ready to attempt a Risky Midwinter Travel scheme to visit my family.
Shuttle+ airport+ plane= 5 hrs each way. What a great idea! My dad's 72nd birthday, I did have hopes.
When suddenly.... Shingles!! :eek:
I thought that...
Spring was an upswing because I was finally free of SIBO symptoms after 2+ years and "I refuse to keep track of how many" rounds of treatment. (mostly herbal).
So fun! I started to eat... raw cabbage again (coleslaw). I was able to work... maybe 30 hours/week (and that is a healthy metric?!)...
I try not to notice the exact date, but this week it's been 2 years since The Big Crash.
On the upside:
- I can work 10-20 ish hours/week
- Sometimes I can walk
- Sometimes I can do yoga or very gentle strength training
- I can do household chores many days
- I can drive myself on local...
We had a *biggest in decades* snow Event (unusual in the NW) over the last 2 weeks.
(Yes I've lived in places where snow is not all by itself cause for complete & utter panic. Western WA is not one of them.)
I thought we would lose power so did all the Prep things- shopped, cooked, cleaned...
I got to have a bodywork session the other day with... well, she's basically a Magician.
She listens to my organs and tells me what they tell her.
My duodenum was all inflamed and there was something wrong with the pancreatic duct. Her theory is that the duodenum was not getting enough...
Tomorrow is last day for oregano.
All of this is giving me MAD RESPECT for plants. :tulip::globe:
Taking it for SIBO (round...5? 6? of treatment) but I suspect it is treating Lyme too.
Started slowly and took 2 weeks to increase to 6 caps/day. It has been kicking me to the CURB. :zippit...
So I'm now taking 1 1/4 capsules of Megaspore. I have to inch up in 1/4 cap amounts and still it knocks me out the next day.
The other night, after going back up to 1 1/4 after a few days at 1 capsule, I woke up at 3 am with lymph nodes so painful I couldn't lie on my sides. Only under my arms...
Wow. So I finally got the DUTCH hormone test back which resulted in
Progesterone increase
Testosterone increase
DHEA increase
And I feel a lot better- more energy, more clarity. All of a sudden I can work longer, more easily-
More easily prepare food-
and I'm even starting a core strength...
Event: Son's college graduation
Directions: Arrive early for best parking and seating. No tickets, no reserved seats.
So, because I'm so smart (read: brain damaged) I decided to go 2 hours early with elderly mother in law, who is much healthier than I am.
Arrive. Nobody there. Except loud...
I can't even type that word. What I'm bailing from. Let's just say "e-diet."
Increasing nausea and stomach pain, and a bout of vomiting.... I couldn't take it anymore. Quit after day 8. Something is wrong. This isn't just die-off.
My new theory (mine and Dr. Internet's) is that there's some...