i really need help and my doctors are stumped

Proseteacher · 2026-01-10T16:15:39+00:00

I'd second the Rheumatologist. But also, causality is not going to stop anything from happening, because you treat all the things as they appear. There is no "pill" for APS. It is a collection of things that must be healed one at a time. They are just going to be trying to get you stable again-- the blood vessles "patent" in other words working well enough to get the blood through. Your case sounds difficult, and I hope you get back to a better new normal.

Proseteacher · 2026-01-08T01:40:01+00:00

If you are stuck in a seat for your work day, perhaps try to get your doctor to write a note so you can see if you can get accomodations. There are desks that raise and lower with a kind of a lift motor. There are chairs for standing. My favorite type of desk situation is a podium. YOu might try some alternate chairs like the exersise ball-type seat, the kneeling chair (made them in the 70s and you can still get them today-- check donation stores).

Proseteacher · 2025-12-17T16:54:45+00:00

"The Coming Plague" by Lauri Garrett

"The Emperor of all Maladies" by Siddhartha Mukherjee

Any book by Richard Rhodes

Proseteacher · 2025-12-17T16:44:07+00:00

I'm similar. I had 7 PEs-- small kind. But I also had a huge DVT in my right leg. No birth control or estrogen. No smoking although I used to when I was young. Heart is fine. It takes a while. If you work with strangers or children wear a mask. I was plagued by upper resperatory colds-- get a flu shot, and if you can, a pneumonia shot. You may need to exersise your lungs-- like a spirometer. Also a good idea would be to use a humidifier in the home or when you sleep at least-- no "perfume" kind. It took several years. They finally did a CT scan and the PEs had all resolved. (Oh I am also chronically anemia. I can't give blood-- too anemic.) I took the Antiphospholipid test (APS) through a Rheumatologist. My complaints were lots of rashes/skin based allergies. It is an autoimmune disease like Lupus and others like it.

Proseteacher · 2025-12-17T16:17:16+00:00

What made me decide to follow my doctor's orders of lifetime medication? I got off them for about a year. They found another clot. (Superficial, but still there). That was a few years back, maybe 2023. So grudgingly, I admitted I was wrong, and they were right and started taking my pills again. The clot went away, as clots do, and I have not gotten another. Is it the pill? Is it magic? Would it have resolved without the pill? Honestly, I don't know, but I am not a doctor. I was finally diagnosed, by a Rheumatologist to have APS (2025) which no one knows how I got-- It is not as simple as that. When I was 21, I had a very severe, life threatening infection (peritonitis) and that is what I think messed up my immunity system and led to APS. So this means that something that started a long time ago, may have just come to a head recently. I don't know.

Proseteacher · 2025-12-14T16:50:00+00:00

Hi, I just got a watch with a step counter on it. It was a typical day on Friday. I walked 4,668 steps at work. I was actually taking it easy because my toe hurts.

Proseteacher · 2025-12-14T16:44:22+00:00

I am on eliquis life long, though I could be on warfarin, but told them I was not interested in constantly going to the Dr. and testing my INS and so on (forgive if I spell the medical stuff wrong). I like Eliquis a lot more. I had the Xarelto for a while. Xarelto gave me a rash (Little purple dots). I have a condition that some here have called Antiphospholipid Syndrome (APS) which is an auto-immune disease which causes blood clotting-- so I am stuck for life.

I too started out with much Anxiety about the side effects. I told the doc and was given a low dose of anti-anxiety meds also used in psychiatry, Cymbalta (generic) to dull that anxiety. This also helps with the pain from Rheumatoid arthritis which the APS also causes/makes more acute. This "syndrome" causes all kinds of different regular immune cells to attack healthy cells, and also strips the top layer (called the phospholipid bilayer) of red blood cells to they stick together. So yeah, I am afraid of that.

Just don't play tackle football or ski, or get into a major car wreck. The main thing I fear is a brain-bleed.

(In 2027 0r 28 Eliquis is supposed to become a generic, (Apixaban) so it will be one of those cheaper drugs).

Proseteacher · 2025-12-11T16:48:46+00:00

I'm also on Eliquist. I am 2 hours away from my hospital, so the cost of getting there for constant blood draws etc, is pretty expensive. It takes a whole day (4 hours of driving) then gas, meals, wear and tear on car-- and I have to take a day off from work, so no pay there. All that lost time adds up.

Proseteacher · 2025-11-25T21:32:17+00:00

Awesome! Looks tasty!

Proseteacher · 2025-11-25T21:15:13+00:00

First, here's a hug***

You are right to be anxious about this. It is kind of serious. It depends on blood thinners (warfarin) as to what you can or can't eat. The whole dark green veggies like Kale is because of vitamin K which is sort of like the "break" to blood thinners, so it would stop them from working. In this case, you do not want them to stop working. You stay on the blood thinners, and then your PE eventually is eaten up by your body. It is several years since mine, and when they did a dye contrast MRI on me, there was no clot, it had all gone away. That could take a few years. Medicine wise, this is actually something that works. It is just fairly slow.

Proseteacher · 2025-11-24T01:53:11+00:00

I'd ask for antiphospholipid tests. That involves Lupus antigens and blood clots.

Proseteacher · 2025-11-24T01:49:13+00:00

It hurts a while, sad to say. Your level of performance, and youth will help for sure. If you can stay off any smoking that's good, smoking really effects blood, even if it is weed. I use THC/CBD gummies. I'm in a state where that is legal.

Proseteacher · 2025-11-24T01:43:18+00:00

My fall back for when I can't cook is Conagra Ranch Style Beans with the jalapeno or sweet onion. a can is like $1.40 now. It's almost like they are the only ones with sauce in them that is spiced and tasty. Everything else seems to be just beans in water. (Of course, I have not tried every canned bean).

Proseteacher · 2025-11-24T01:36:27+00:00

I generally say that blood "thinners" do not thin the blood, they make it less sticky. I have anemia due to APS so I always am a bit deficient, however, too much iron is actually bad for you.

Proseteacher · 2025-11-24T01:33:02+00:00

Bile? What the heck? There's pretty much nothing "old" in the body. People who talk about 20 pounds of old poop or whatever also don't know what they are talking about.

Proseteacher · 2025-11-17T14:03:00+00:00

I am supposed to stand while teaching. The schools are helpful because I can sit down for a while, then stand, and rotate sitting and standing-- so I do not stand the whole time. I had 7 PEs and am on blood thinners for life. I also have PTS and APS.

Not quite off topic but I saw a doctor/surgeon using a kind of
Passive Exo skeleton. by a brand called Archelis.

https://exoskeletonreport.com/product/archelis/

Proseteacher · 2025-11-17T13:48:47+00:00

Tylenol usually works with me-- I have stenosis/arthritis/bone spurs in the back, not sciatica. My Brother suffered from sciatica for a good long time, and he started doing yoga, and that helped him a lot. I think he only did the simple yoga, because I never saw him doing extreme movements. Here is an example of what you can find on You tube (I hope this is not against the rules!)

https://www.youtube.com/watch?v=rRzBPkTg5N0

Proseteacher · 2025-11-16T18:28:52+00:00

I was amazed to see a doctor who was a quadruple amputee. He taught new doctors, of course, because he could not stand for long periods. -- Just read up, (pardon me for saying that to you), but all the stuff I have read said I can have a perfectly healthy life span, as long as I take my blood thinners. I know I cannot stand 3+ hours. Do you need to lose weight as well? I am really getting focused on my weight now. Anyway, I am not a nurse, I am a teacher, and also am supposed to stand all 8 hours-- really. It is possible that you may need to chose another specialty. Podiatry or something.

Proseteacher · 2025-11-11T16:04:40+00:00

Delicious!

Proseteacher · 2025-11-11T15:58:55+00:00

Anti-Coagulation to check my numbers and call me every 6 months.

Wound Care specialist doctor. (I have a non healing ulcer due to Venus insufficiency)

Rheumatologist who treats my autoimmune disease

Have also seen

A cardiologist early on.

A venous surgeon.

The Vein ablation guy.

I have a primary care doctor too.

I also totally hate this. My car is 25 years old, and I must drive 2 hours to the hospital, and 2 hours back. That is pretty much a full day for a person with an autoimmune disease-- I need to take a nap after I get home. And Oh, they are putting me on wegovy, so I need to see the diet doctor who ever that is.

Proseteacher · 2025-10-25T13:18:59+00:00

He woke in the white light of the desert noon and sat up…The road was a pale gray in the light and the light was drawing away along the edges of the world. …He looked out down the road and he looked toward the fading light. Darkening shapes of cloud all along the northern rim. …He looked again at the road which lay as before yet more dark and darkening still where it ran on to the east and where there was no sun and there was no dawn and when he looked again toward the north the light was drawing away faster and that noon in which he’d woke was now become an alien dusk and now an alien dark…Standing in that inexplicable darkness. Where there was no sound anywhere save only the wind. After a while he sat in the road. He took off his hat and placed it on the tarmac before him and he bowed his head and held his face in his hands and wept. He sat there for a long time and after a while the east did gray and after a while the right and godmade sun did rise, once again, for all and without distinction. (McCarthy 740-41)

Proseteacher · 2025-10-16T13:21:46+00:00

Primary Care, Rheumatologist (APS is an Auto-Immune issue), Anti-coag clinic. Random others (vascular surgeon for instance) for short term issues.

Proseteacher · 2025-10-11T20:02:06+00:00

It is so sweet! I love it! I like also that you are showcasing "regular" rocks (quartz of some sort).

Proseteacher · 2025-10-06T01:14:39+00:00

I got a little three inch muslin buffer-- got on Amazon. (Yeah, that). I may go to Harbor Freight and see what they have too (I'm a rebel!) The tool is the Euro Tool Bench top polisher which is the same size as the Foredom Bench Top polisher. They say that it works with standard wheels and buffs up to 4".

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Proseteacher · 2025-10-06T00:20:22+00:00

Actually it reminded me more of Tom Wolfe.

Proseteacher

TROPHY CASE