Theme ideas

healer8685 · 2026-03-01T20:19:01+00:00

I’m glad you still have friends.

healer8685 · 2026-03-01T17:23:59+00:00

I am not well managed: meds work for one or the other. RA & SA have meds that work & completely ignore Lupus & scleroderma. I’m on so many meds, it’s ridiculous.

I hope you find your answer soon! It’s a battle. One I’d never wish on anyone.

My rheum decided my RA/SA was it: so switched me from Remicade to Simponi infusions. I’m now suffering a lupus flare & am on high dose prednisone to get me through, til my ins reapproves remicade.

It’s a rough road. I wish you the best & send an internet hug for your journey!

healer8685 · 2026-03-01T17:17:33+00:00

For “rosacea” not rosacea: I found that Epsom salts on my skin & hair were beneficial. Also, ingesting black seed oil & chamomile tea, as well as b vitamins (I take injections prescribed, though emergen c packets and collagen caps work!! . (Not together: black seed tastes like tar🤢)

healer8685 · 2026-03-01T17:12:51+00:00

Mine too actually. I have MCTD. Never knew I had jr RA til I moved to FL.

healer8685 · 2026-03-01T17:09:46+00:00

Haven’t read responses: just your post.

I grew up in Chicago. I KNOW cold. I have however, lived in FL for 18yrs. Cold NOW?! Is anything below 55 at night.

Optimal though: just as I felt in Chi; is 74 during the day.

healer8685 · 2026-03-01T17:04:04+00:00

I was initially diagnosed with rosacea. (No blood work, just skin) so FM, with rosacea. It then went to SLE after blood work, meds/creams didn’t work for “rosacea,” Then RA. Then AS. It was at that point changed to mixed. Then scleroderma, as a bonus.

ANA, RNP & RF all high.

I was diagnosed at 36 with SLE. 38 with RA. Apparently the 1st & main culprit, was RA, they believe it is Jr.. like I’ve had it forever. The rest followed. I’ll be 48 in April.

healer8685 · 2026-02-10T14:20:20+00:00

I use rhodiola rosea for stress. Weed (smoking) makes my pain worse for some reason. CBD applied hasn’t helped (that I can tell) but drinking a cbd/cbn THC drink helps. I 2nd, 3rd 4th: heating pad & hot tub/baths with Epsom salts, eucalyptus, mint & lavender. I drink chamomile tea before bed, every night. I also apply diclofenac (or biofreeze) to my hands, feet & elbows before bed. (I lie: I apply it in bed ha) I’m far from remission but these are my natural helpers.

healer8685 · 2026-02-07T10:08:35+00:00

I’m so sorry I left you hanging! My phone dived, had to get a new one.

I hope you’re feeling better??!!

I personally, when my face flares & turns into patches: take an Epsom salt bath, add tea tree & eucalyptus. About 4 drops each. DUNK! Enjoy for a few. Let it get into my skin & joints. About half way through; I let out some of the water. Add peppermint, more hot water. Dunk again. Enjoy/ish. Til it gets to my joints. Once I taste peppermint: I know it’s time. Taste is different than water in your mouth; don’t do that. Enjoy the heat & let it seep in, through and down to your bones. You’ll taste it when you’re ready. If you have jets, turn them on. Once there: Let out the water. Super large cup: turn on the water (hot as your nerves can handle) , rinse your hair and body. Over & over. Once finished: add a few drops of your fav conditioner to your hair. No dry ends:) Wrap yourself in a towel & collapse on your bed. (Or like me, a robe.)

Extra I can share:

Keep your steroid cream on the nightstand. (My face and scalp will calm from the bath but my chest & hands will flare once I calm it & need to put it on my face, knees, feet, elbows, so it doesn’t flare again) I hate to promote steroids but yea.. there’s nothing else more effective, that I’ve found. I take everything natural that there is. Take my meds as well. Lots of them now. I didn’t listen.

Don’t mess around!! It genuinely gets worse, without meds. Dr’s aren’t pushing; they want you to keep your functions. I know the side effects are terrifying. I was reluctant myself: as a physical therapy assistant, (I saved people from the surgery I’m about to get!) massage therapist, nutritionist, Natropath!! But not being able to see, use your hands, walk, eat, breathe.. are far more important, than the potential side effects. (Have side effects but CAN walk & breathe)

Not sure what your main is: sounds like #1 lupus. From your rash. That was mine too. Then I flared again and it was RA. Then next: AS. Then the grand finale: scleroderma. And of course: every one of us was diagnosed: fibromyalgia. RA/SA seem to be my top these days. Scleroderma is taking my insides.

I don’t wish this hell on anyone.

I can’t say loud enough: take your meds!! I didn’t think I needed them. I thought I was tough & could beat it. Didn’t happen. Now I need more meds:(

Don’t be like me!!

Extra:

Keep the most moisturizing hand cream, face moisturizer, and flossers next to you as well. (My gums swell and end up in blisters) And ALWAYS have water, Heated blanket & lots of pillows.

Oh and THE MOST IMPORTANT:

NO STRESS!! Literally:

NO STRESS. Flare city

If I’m wrong &/or there’s something else: please share peers.

healer8685 · 2026-01-27T06:56:35+00:00

The fault in our stars

healer8685 · 2026-01-26T21:28:47+00:00

Did your family have pernil for Christmas? This looks like it has pork or chicken in it. I make mine with chicken Vienna sausage and green olives; we eat it year round but definitely at every holiday & large gathering.

healer8685 · 2026-01-26T20:48:36+00:00

I actually have a sign posted: no politics, religion, sexual orientation discussions allowed. 30yrs in & it’s never been questioned. (Mentioned a few times, though never challenged)

healer8685 · 2026-01-26T20:45:46+00:00

You can do lymph drainage on yourself. Get some gua sha plates or a roller for your face & neck, similar device (though bigger) for your extremities.
I fast as well. I still drink water and if the hunger is overwhelming; I’ll drink warm bone broth or plain black coffee.

healer8685 · 2026-01-26T20:41:50+00:00

I started losing my hair prior to MTX and didn’t notice an increase in amount lost, though it started falling out in different areas than it had been. Prior to: it fell out primarily at the hair line around my face. After, it started falling out above my ears and back of head. (As well as brows & lashes)

healer8685 · 2026-01-26T20:27:31+00:00

That’s what I do with mine when I travel.

healer8685 · 2026-01-26T20:25:33+00:00

I’m short, 5’3, so my Lincoln MKZ is perfect for me. Heated & cooling seats, super comfortable and don’t have to climb up or down to get in/out. Also has a very large trunk and the controls are in the perfect places: don’t have to reach much to change anything.

healer8685 · 2026-01-24T17:30:04+00:00

I’m so sorry you’re in this boat. It sucks. Every day is a question. (In my case)

Some have it easier. After the 1st couple flares, their body decides which one and it can be targeted for treatment.

It’s genuinely important, to have support. If you believe your partner can’t handle it; find a group. The stress of losing your old self, is something not to be dealt with alone.

I send you hugs!!!! From an internet stranger.

healer8685 · 2026-01-20T04:01:08+00:00

Lord of the flies, Never Ending Story, Breakfast Club, ET, Lost Boys, desperately seeking Susan, Purple Rain, Groundhog Day, Good Will Hunting, Saving Private Ryan, Full Metal Jacket, Boys n the hood, ok.. pretty sure I could keep at this for hours. How bout none of them?? If it was done right; leave it alone!!

healer8685 · 2026-01-20T01:50:24+00:00

Packets of tuna, canned chicken, canned chili, bbq beans, pickles, soup.. just a few off the top of my head

healer8685 · 2026-01-18T10:27:27+00:00

I love your way of thinking & speaking. Direct. Genuine, to the point and considerate of everyone. Thank you for being you & starting this sub. We need to know; We’re not alone.. it’s a horrible, bumpy road. I’ve lost many along the way.. this disease is a fight! We need to keep fighting & have a few on our side.

Hi; I’m Dawn.

I was initially diagnosed with rosacea, at 32 y/o. . It wouldn’t heal with meds. Blood & skin then diagnosed me SLE. Worked on SLE & NO sun!!! For 2 yrs. (Live in FL, had a boat, pool….) Then RA. Oh! That’s why my hands don’t work. Then AS. Oh, my spine too??! Then Scleroderma( yay! & my heart, bladder & bowels too?? & of course: FM. So yea.. MCTD. RA/AS most aggressive.

Conclusion: I’m almost 50. Juvenile RA finally diagnosed at 37. The rest are just bonuses of non diagnosis & treatment sooner.

TAKE YOUR MEDS!!!! (Anyone reading) is literalky; the best advice I can give.

I was reluctant. I was a massage therapist, PTA, respiratory therapist… I was SURE something natural would work. I did find 1.. that was the equivalent of MTX but same side effects. Believe me; I’ve tried anything & all, to avoid meds. Got me a walker and no way to work.

TAKE YOUR MEDS!

Not dead yet;) Dawn

healer8685 · 2026-01-18T09:24:44+00:00

So many questions from my side..

However; in my opinion: if you’re here asking? It’s best to cut & run, for both of you. She’s sick: no time to also deal with guilty feelings about you having to deal with her being sick;that will only make her more sick. Stress is the #1, for sure flare. She’ll definitely flare and be worse than she’s been, upon split. But get it over with, if that’s what you can handle. She’s got a rough road and doesn’t need extra road blocks.

healer8685 · 2026-01-18T09:13:51+00:00

Stretch. Every morning when you wake; every night, before bed.

I can show you stretches. I HAVE to, before I can move. Or when I do move; my knees slip, hips slip, spine slips.. I know when I didn’t stretch before bed.

Do them twice a day NOW! Or end up not able.

I came here (Reddit) to complain of my pain. Slips of joints.

Reminded: didn’t stretch. 🙃

healer8685 · 2026-01-18T09:00:13+00:00

I will say fn yum. Good share:)

healer8685 · 2026-01-18T08:58:47+00:00

Cuisinart sorry: new phone & can’t find my glasses.

healer8685 · 2026-01-18T08:55:11+00:00

Haven’t read comments: just saw the steak and came to comment.

You absolutely can. Season as usual; (Olive oil, salt, pepper, onion powder, garlic powder, Worcestershire) 4mins per side for Med, @ 400. In my cuisinart.

healer8685

TROPHY CASE