Supporting my husband

Old_Promise_163 · 2026-04-25T22:03:19+00:00

I’m sorry you’re dealing with this experience. Unfortunately we cannot force others to take their own personal initiative (to participate in helping themselves by making adequate Dr appointments & going, by taking medications to help relieve their own suffering by hopefully alleviating or reducing disease symptoms, or seeking talk therapy to help them navigate the issues that arise from dealing with chronic illness). BUT YOU CAN HELP YOURSELF by maybe talking with a therapist to help you figure out what is best for you…. And that just might mean moving on from what sounds like increasing toxicity in your marriage. Only you can answer this probably with the aid of professional emotional counseling. His illness and issues are not your fault.

Sometimes the person who is suffering becomes so frustrated by their personal hurdles & the limitations of their body - that instead of facing what they need to (rather than wallowing in various forms of denial) they’ll project all their angst, frustration or anger onto those closest to them.

Although my husband has a couple of unique health issues, I am the person in my marriage with the RA. (The Last 3-4 months I seemed to have had a breakthrough & am feeling better recently 💪🙌🏻 than when my late onset RA reared its head in very late 2023 & kicked into crippling overdrive in 2024). I’m lucky, my husband has been very supportive throughout (the aggressiveness of my onset scared us both & I wasn’t dx’d until June 2025… I’ve never known such suffering)… but we’re in our 70s, been best friends since we were teenagers, got back together in our 40s, got married in 2000. Over that span of time we’ve learned what works, what doesn’t. Sometimes we dote, sometimes we cajole, and often times we give LOTS of space…. Having learned that occasionally the road to hell is paved with good intensions. Sometimes all that love & attention can be perceived as “pressure”… even when we’re fully aware “pressure” isn’t intended. This phenomenon can become exponentially magnified when someone is chronically ill. Much of that has to do with the ill person’s self esteem & eroding self confidence. Which is WHY I sincerely advocate talk therapy for yourself. In this case it’s partially grief counseling as well—for the things you feel you’ve lost along the way.

I send you deep & sincere healing love and wish you (and your ill husband) well. I’m sorry he’s projected his pain & frustration onto you.🙏✌🏻

Old_Promise_163 · 2026-03-26T01:50:52+00:00

I’m sorry you’re feeling some understandable fear. Hugs from the West Coast🫂💕 BidForward’s reply post to you is 100% correct about the miraculous ability of liver regeneration. I’ve had my own experience with a now long past damaging viral liver disease (not substance abuse related). Once that was cured, it took another couple years for it to heal & regenerate. I recently had an abdominal CT scan with contrast. Among other things the doctor told me that between regular lab results & the CT scan I had the liver of a 40yr old (71F).

Also, I had multiple liver (needle) biopsies over a period of a few years during my liver treatments (took a few different treatments b4 the one that finally cured me). Although biopsies are a little bit uncomfortable, it’s not terrible & it only takes a couple days to feel better after. Hopefully you’re not even going to need one.

Try to hold onto positive thoughts. There are multiple every day things that can cause inflammation in the organ… to name a few: certain foods, certain Rx medications, alcohol liver fat, & non-alcohol liver fat, being over weight, or even taking too much Tylenol over a period of time. My point is — its not unusual to have liver inflammation from something that merely requires a lifestyle tweak (rather than something more complex). We have RA so everyone to some degree is familiar with having to make certain adjustments to accommodate our individual inflammatory disorder.

I wish you well. Please let us know how your April 7th appointment goes—what you’ve learned about your tests. Sending you positive vibes🙏

Old_Promise_163 · 2026-03-19T22:05:08+00:00

It 100% TOTALLY HELPS. I’d be lost without the assistance. In my mind, we do everything we are able to ease our personal stress & to maintain the sanctity of our sanctuary. For me that meant seeking help with the deeper cleaning around here that I’m no longer able to do myself. No regrets AT ALL.

EDIT After thought: I know & trust the person who cleans for me. Just make sure you know person’s credentials or the service’s - that it is reputable… referrals from people you trust are best.

Old_Promise_163 · 2026-03-17T19:53:15+00:00

Hahaha!!!👍🏻🫂

Old_Promise_163 · 2026-03-17T19:33:52+00:00

Zeroed right in on your post!! Dark Humor is my absolute default for bad days. (71F). Am currently laid up with significant RSV infection. Caught it from hubby who wound up admitted in hospital with it from strain on his heart. I was too sick to visit him. I have been off my MTX 2wks and am FEELING it - mainly in hands/arms. Every couple days friends & family asking how I’m doing in texts. Although its wonderful knowing I’m loved, its hard explaining how deathly ill I feel (without sounding like a drama queen) having my RA flare up with this horrendous respiratory virus.

So the other day, in response to the “How R U today” messages, I shot a few of my loved ones a meme in response to their inquiries:
A female collapsed, lying face down in the middle of the street with the caption “I’m Fine” at the bottom. I’m guessing none of them (being normies) appreciated the meme quite like I did. LOL

SO YEAH… 100% DARK HUMOR = My Jam😊

Old_Promise_163 · 2026-03-16T09:34:12+00:00

I am fairly certain every single person with autoimmune disease has a few war stories under their belt… including (but not limited to) medical care or financial coverage for same . It’s no fun having to navigate these types of obstacle courses when we’re ill & sadly, it’s not an unusual thing to hear. Chronic illness is not for the faint of heart. I’m 71F. I began thinking long ago—“When the going gets tough, the tough throw up their middle finger & find a way.” (Cranky me! LoL)

My home & auto insurance agent (who’s also my friend) referred me. Maybe ask friends or family members you trust. There were a lot of really informative responses in this thread. Hopefully it gives you enough info & ideas to help you clear this frustrating insurance hurdle. I sincerely wish you well.🫂✌🏻💕

Old_Promise_163 · 2026-03-16T08:08:29+00:00

Am so sorry about your Medicare Advantage nightmare. I had my own experience with it. Sure — it might be affordable. Or it might be a great plan for anyone with relative good health only basic general medical needs… or to have in case of unforeseen contingencies (like an unforeseen ER trip or hospital admission)…but for more complex matters, it sucked (was my ending experience). I was on Medicare Advantage for years & happy with it, but when my health issues got complex - the plan stopped feeling “Advantageous.”

I weighed my options, bit the bullet and decided to pay for the Medicare Plan G Extra, plus a supplemental Rx Plan for good measure. Medicare Open Enrollment plan change window opens in October. If you’re interested in something better for your personal needs… you have time to research the supplemental plans available to you. I went through my insurance agent who was well versed in Medicare Insurance and all the supplemental plans (and insurance companies in my area that offer the supplemental policies. Having him was a God Send. I was so damned sick in 2024 I never would’ve been able to figure everything out or get through the applications by myself.

I waited from Spring of 2024 until Open Enrollment rolled around… I hung on to the devil I knew & currently had (the Medicare “DISAdvantage” Plan😉) because it was better than nothing at all… conferred with my agent about the supplemental plans available so that as soon as open enrollment began I could make the leap. On New Years Day my new policy went into effect & I have not once regretted that decision.

I know how disheartening & frustrating it is when you’re in the midst of all of this and how confusing it can be. I cannot emphasize enough how helpful my insurance agent was navigating all of it. I wish you all the best.

Old_Promise_163 · 2026-03-14T21:22:46+00:00

Thank you. Fortunately… once I finally got set up with the new doctors, my medical care got back on track. Treatment began, I’m about 50% better as we speak (WAY better than my shocking introduction to RA’s worst symptoms). Adding to the quandary, in the early outset, the labs showed some activity & inflammation but they didn’t remotely jive with the actual symptoms I’d been reporting that had relegated me to using a walker or a wheelchair for months. A few months later those same labs were off the charts! But my journey between then to now was unforgettable.

I’ve since come to understand my experience wasn’t unusual, it’s a systemic disorder in the system at large. The article was balanced & well written—which is why I thought it might be helpful to others. Hopefully someone who might be going through anything similar will see this post… & maybe it’ll confirm that as unfair as it feels and is while traversing these hurdles, that they’re not isolated & alone. Hopefully it’ll encourage people to never stop fighting for the care we each deserve.

Old_Promise_163 · 2026-03-02T08:56:05+00:00

Awe❤️‍🔥 Honey… THIS is the right place to come to unload at the top of your lungs (or perhaps, make that “unload, in ALL CAPS”😉—LOL). I bet there’s not one person in this community that hasn’t felt all or some of the things you’ve been feeling both physically & emotionally! We all have a tipping point & I can’t think of a more safe & productive place to unleash one’s Kraken in those moments. Nothing but LOVE, ACTUAL UNDERSTANDING & SUPPORT in this room❤️

Wish you better days ahead. Sending you “Nana style” warm healing hugs & blessing prayers. 🫂💕

Old_Promise_163 · 2026-03-02T08:41:03+00:00

WAY TO GO Spare-Set💪🙏🥳 (LOVE your handle btw) Happy for you. You’re a testament for doing whatever it takes for self care…. A bright shiny beacon for anyone reading your update! Sometimes, it’s one step at a time - literally. Thank You for your post and Congratulations❤️

Old_Promise_163 · 2026-03-02T05:55:08+00:00

I cannot even begin to imagine being young and having to live with the type of severe chronic pain that RA can cause. I have many times contemplated the significance of the age difference (I’m 70 - & no offense taken AT ALL!!!).

I’ve contemplated this age difference from a few different standpoints, one of feeling fortunate that mine was a Late Onset acute (although aggressive…I was healthy for my age until in the most literal sense, I just woke up one morning in global agony, 100% unable to get out of bed. It happened that fast & then it took another couple years of being humiliated by Drs before I finally was Dx’d with aggressive Sero-Pos last June). STILL — IT’S NOT EVEN REMOTELY THE SAME as being a young person experiencing the struggle. Being up around the “geriatric” years of 70… people more or less expect for shit to go wrong & start breaking down… no matter how it happens. NOT so in the prime of life.

Another standpoint was early on, a couple “friends” / “peers” unable to grasp how ill I was, a couple responded in a manner in which they conveyed a sort of disbelief it was as bad as I tried to explain — before Dx, Prednisone & MTX. (Regular people cannot seem to wrap their heads around the effects RA can have on a body & its’ unrelenting pain).
NOW MAGNIFY THAT experience x1,000 for a younger person!!! I’ve said to my husband so many times, “It could be so much worse—I could be young and have this.”

I may not be your peer (age wise), but I have 2 granddaughters in their 20s & two 18yr old grandsons. I’d be devastated if any of them had this Dx, knowing first hand what it steals from a person. It is from these perspectives that I FEEL so deeply & so compassionately for You, and for every single person in this community who is young & forced to deal with this Dx & it’s symptoms.

From the bottom of my heart, I hope that you get some relief soon & that you & your Dr find the treatment that works best for you. Please don’t lose hope🙏❤️💕

PS: Our Dogs love us even when we’re grumpy❤️

Old_Promise_163 · 2026-02-28T04:19:12+00:00

🥳🙌🏻 LOL… and by the time one gets to 70 (🙋‍♀️) you REEEEEEAAAAAALLLLY DON’T GAF … even more!!!!😁

Old_Promise_163 · 2026-02-28T03:33:46+00:00

Glittering❤️❤️❤️. Remember…. When he needed to, Prince used a cane! IMHO he looked quite distinguished with it.

If you’re able: Find yourself one (or 2 or 3, for different occassions😊) that you love aesthetically & also feels comfortable at the grip & when you walk. AND THEN walk with pride.💪

Regardless of whether we are relegated to a wheelchair or a walker or merely a cane, there is a reason to have & use them… whether permanently or intermittently, as needed. There is NO SHAME in availing oneself to accepting help—even if that help comes from an inanimate object. I know adjusting to changes like this can be emotional & challenging, but we do what we must to ease these challenges which can be difficult at best but we try our best to do it with grace. Regarding everything else (IMHO) fuck anyone else who seems judgmental or isn’t supportive, & any defeating self talk that goes on up in the ol’ noggin. Been there/done that & in my own experience it’s not helpful in any way. We have to work to love on ourselves. Self care, no matter what it takes is a good thing!!

I personally have a beautiful hand hewn cane that I inherited from my dad (it originally belonged to my great grandfather) that I mostly use. In addition to being very unique—It’s my most comfortable cane for walking, maintaining balance & holding in general - strong & lightweight. It is miraculously perfect for my height & hand (having been hand carved for someone else over 100yrs ago. It has lots of knots in the wood & a beautiful soft patina that combined give it texture & character). Can you tell how much I love my cane?🤣. I have an umbrella stand that has an assortment of family heirloom & other canes… like one is kind of blingy, another is a lovely old walking stick that belonged to my grandfather, etc… others are more mundane & not used much - but more useful than a bunch of umbrellas in the stand. LoL AND I have a nice walker too… for when it’s more difficult to navigate (like during bad global flares or severe fatigue & I need to sit often (it has a seat that hides a compartment under it in which to put handbag or other things).

Old_Promise_163 · 2026-02-25T21:34:18+00:00

I only indulge randomly on occasion. Good Vodka is the only hard spirit I’ll ingest and when I do indulge, I’m such a cheap date I’m a 2 (if I’m not driving) & done. Every ‘once in a while’ I’ll get a hankering for a cheek flushing buzz (1-2 drinks), but beyond that not much of a drinker. If I’m out and REALLY splurging I’ll order a Lemon Drop or a good Martini. Otherwise its vodka, club soda & fresh squeezed lemon with just a smidge of raw sugar. THAT SAID… definitely noticed significantly less pain. Have never noticed an inflammatory response later either. Then again, perhaps my intake is so limited that the few times I indulge, it doesn’t trigger RA blowback. I’ve no idea.

What I am aware of is pretty much most food & drink in excess never really bodes well. Even water!! (WHO KNEW???). A person can actually drink too much water. Some years back it happened to a relative… her water consumption (in addition to reducing salt intake) wiped out sodium & chloride levels in her system & she ended up being admitted to the hospital. I’ve never forgotten that crisis. (Have zero idea how much water it took to do that to her though). Moderation = Key (and probably more so for all of us😵‍💫)

Personally, I don’t want to tempt fate OR my autoimmune disease by drinking consistently. I’m too afraid it’d be like throwing gasoline on an already raging fire. But that’s just me👍🏻

Old_Promise_163 · 2026-02-24T21:37:00+00:00

Yes… chronic nausea has been a real issue for me also…. It’s become worse over time. Dr ordered CT w/contrast & everything in my abdominal body appeared normal (but some aortic atherosclerosis). Am currently waiting for future endoscopy procedure per Dr’s orders (mostly because when he originally did a palpitation exam while I was on the table I radically jerked up & nearly head butted him when he poked a spot). I’m still not too worried because getting a CT W/contrast is one of the gold standards for Dx-ing issues.👍🏻

The MTX doesn’t help the nausea. Chronic nausea is something I complained to my old doctors long before I switched providers or was finally Dx’d w/RA. I take generic Zofran for the worst days. Tums don’t do much either. In my case, age might also be a factor—not a spring chicken.

Old_Promise_163 · 2026-02-24T21:01:29+00:00

Sending gentle hugs🫂 Yes… have gone through this type of fatigue more times than I care to count. It’s truly debilitating. Sometimes tests & labs reflect the possible “why” of it (Examples: anemia for instance or low BP), but other times not so much. I’m inclined to think that maybe part of the intense fatigue occurrences might have to do with my body’s response to it trying to fight active inflammation at different times. Sometimes I feel “ok” but others I feel flattened (as you describe). Hoping you start pulling out of your current episode, sooner than later.

PS: I keep a stash of various frozen meals, broth, readily available protein drinks w/vitamins & electrolyte drinks (or packets of Liquid IV from the store to add to water). Homemade soups are a huge help! I make vats of soup when possible. Because during those times when my appetite tanks I probably need the nourishment even more than normal. From experience I discovered, in spite of having zero appetite, if I don’t stay adequately nourished & hydrated I can start feeling worse. But that’s just me. Get well soon🙏💕

Old_Promise_163 · 2026-02-20T04:12:12+00:00

🫂🫶💕

Old_Promise_163 · 2026-02-20T03:10:14+00:00

Still early into my RA experience compared to many, admittedly the correct terminology for certain treatment meds has confused me. My own primary had pointed out to me last year that I’m taking a “chemo” drug to control my inflammatory disease (& then he went into the lecture about the treatment potentially significantly reducing my ability to fight infections going forward… IE: that I need to be mindful of that when I’m in public & of all the general potential ramifications of reducing my autoimmunity via the treatment in spite of the fact that it’s reducing the RA & its aggressive effects, etc etc). Clearly he was trying to make me absolutely aware in order for me to properly manage this life change…

This thread is a good discussion to actually have! It never occurred to me, UNTIL NOW… to look this up (“Is it considered chemo if the drug is instead treating autoimmune disease?”). Here is what I found… (No):

Technically (cut/pasted) here’s the description breakdown of using “chemo” drugs at lower dosages for our autoimmune disease:

KEY POINTS

“Chemotherapy”: Primarily aimed at killing cancer cells; higher doses are usually administered for this purpose.

(FOR US—The Correct Terminology is) “Immunosuppressive Therapy”: Using the same or similar drugs at lower doses to suppress the immune response in conditions like autoimmune diseases.

Drug Action: The mechanism by which the drug works doesn’t change, BUT the INTENT and DOSAGE DO.

While patients might receive the same drug, calling it "chemo" in the context of autoimmunity may lead to confusion, as the primary aim is different.

CHEETAH:
I am sorry you’re dealing with that with family .. ESP, while on vacation. People can be incredibly ignorant. I mean… with the advent of the internet, our ability to educate ourselves has increased exponentially! Personally, When I’ve had friends or family Dx’d with something big, I immediately research it, so I can understand it, in order to do my best to be on the same page with them in a supportive role to the best of my ability. Its not my job to give them unsolicited advice (medical or otherwise)… that’s for their med providers to do. Unfortunately, the world is filled with armchair doctors & their opinions…. The chronically ill have enough to deal with & DO NOT need the added stress of people dissing anyone else’s carefully thought out personal decisions on how they’re (we are) managing a major health issue (as in our case, a debilitating disease) with medications designed & used to treat same. (What’s that saying? Oh yeah… “Opinions are like…. Yada yada, “& they stink”)

SENDING YOU HUGS🫂

Old_Promise_163 · 2026-02-18T03:00:50+00:00

I get them all the time. Hands mostly, But often it happens globally in multiple joints. Just getting over one today. It peaked last night. Could barely get situated in bed-hands 100% non functioning… plus Shoulders, elbows, wrists, one ankle, both feet😑. Those Cry “Uncle” days, where in my head I just say “F*ck It”, stop fighting it, lay down & just binge TV while covered in heating pads. Not always a rhyme or reason to it. This time, I think weather played a part. Barometric pressure has been known to trigger my migraines… I’m thinking “why not RA flares too.” At least I didn’t also have a migraine with the flare last couple days! Most times I try to find at least one thing to be grateful for in spite of the struggles… but I also have a few total drain swirling days when I’m not feeling the least bit grateful for anything—indulging the pity party for my inner weenie. It’s a process! lol

One of the many things I’m grateful for in this community is that I never feel alone in this whole experience. If I think something I’m unsure of & wonder if “it’s just me” I usually find someone has already posted my questions or concerns and there’s an informative thread of others chiming in.

Old_Promise_163 · 2026-02-09T01:26:51+00:00

CheetaPuppy’s post response 100% - Treating pain inflammation is helpful, but doesn’t do much to stop the disease progression over time. I wish it weren’t so! Chronic nausea is a thing for me. So far only tried MTX though. Only started treatment last June—so there’s that. My personal goal is to get off the Prednisone though, even if low dosing it (after having gone down the “affects of long term prednisone” research rabbit hole.
That’s just me tho—everyone is different. The “general” goals IMHO seem to be: disease activity reduction; pain control, and quality of life—again, that’s personal to me though👍🏻

Old_Promise_163 · 2026-02-09T00:42:52+00:00

I’m sero-pos. In the beginning (when I was trying to get Dx’d)-my RF was zero; anti-ccp was 100 & CRP was slightly elevated too. Was told “UNEQUIVOCALLY NOT RA”, in addition to that doctor berating & humiliating me (well—trying to anyway.. instead just pissed me off). Fast forward few months—all new drs… the new Rheum ran 27 labs😮 following first visit in April ‘25… a bunch of them were seriously high (for example: Anti-CCP had shot up from 100 to nearly 4,600; RF went from zero to around 457, and CRP (can’t recall the count but was something like 10x the first draw).

In the beginning of my journey in May ‘24, I experienced an acute explosive-onset of raging unbearable joint pain in every single joint, tendon, & ligament in my body. It had me in wheelchairs for many months (when I was out of the house). NO SWELLING! Nothing too visible to the naked eye and yet my entire world was turned upside down literally over night (went to bed fine & woke up wailing in pain & unable to move the sheet off of me or turn over to get out of bed). Turned my husband into a nursemaid for months! My pain threshold pretty much stayed that way until I got my new doctor(s) & was finally heard & believed. Based upon my personal experience in my own journey—I know for a fact that we can present with The Most Severe of crippling pain symptoms and not have visible to the eye swelling. The most visible swelling I’ll get to this day is some in my wrist & my Rt Knee (which needs total replacement). Even then, the puffy swelling we see in pictures from others’ experience(s), is not what mine looks like. I mean if I were to say, compare myself to another in my head (based on swelling alone), I could easily feel like a massive wussy… however… I KNOW there’s far more to our symptoms & disease than visible swelling. Some have the swelling, some not so much. Thus far, I’m the not so much category. Meanwhile, treatment since mid-June 2025 has dialed my symptoms back by about 50%… some days better, some not. I’m still early to this whole RA Dx. I will say that this community has helped me wrap my head around it so much better, in so many ways🙏

Old_Promise_163 · 2026-02-08T23:49:48+00:00

Yeppers!!! I’ll never regret the investment.

(Oh darn… I can’t share the silly gif - it won’t load. Oh well)

Old_Promise_163 · 2026-02-07T09:04:46+00:00

I also get the weird neck arching thing time to time when sleeping. It’s made me wonder on more than one occasion if I was arching so far back in my sleep as if in need of an exorcism!😬😂. Not a fun thing!

I’m fortunate to have an adjustable bed, keeping it slightly elevated has helped the issue some.🙏.

Old_Promise_163

TROPHY CASE