I miss everyone here too. I've had so little to contribute, and other than my hip pain, things are generally going relatively well - and partly, I needed a break from feeling whiny. You know what I mean? There's such a fine line between staying on top of this thing and obsessing. I spent the first two years after my diagnosis reading Everything and charting Everything and researching Everything, and I think I sort of burned out. I have been blithely sailing through the summer and early fall thinking all was well, and thinking that it was healthier for me to not be as focused on the RA as I had been - and that included taking a break from this site, which aside from the wonderful people who actually ARE here, is, let's face it, something of a black hole in terms of activity.

So I sort of woke up from my lovely summer and realized that the nodules on my fingers seem a bit bigger, and there's vertical lines in my fingernails now (I'm sort of on the border between RA and PsA apparently; technically, I'm 'undifferentiated", but when my RH wants to get a drug approved my diagnosis shifts back and forth).

I wouldn't have phoned the doctor for an in-between appointment based on these things, but it still kind of surprised me that I had become so unobservant. At the same time, not obsessively checking every lump and bump constantly was good for me too..........this sounds so contradictory, I realize, but that's kind of what my life is like lately. Alternating between trying to just live a good life and trying to stay on top of this stupid ass disease.

Tell me about your topicals. I've got CBD, frankinsense (sp), arnica, and capsaicin on hand, and i' haven't felt that any of them have been all that helpful. Hot baths feel good, mostly from a psychological point of view (i.e. self-care that's free, and comforting). Advil / Aleve help a bit.

I'm getting frustrated, but I also know that this is the time of the year when i'm most prone to feeling that way, and that pre-dates the RA by decades. - I always have trouble adjusting to shorter days in the fall, but weirdly, I adore winter, once it sets in. I think it's the transition that I find unsettling. And my husband retires soon, and everything that accompanies that has heaped a little extra sense of aging / mortality / uncertainty on me too - again, another transition.

Re-reading this, it sounds much gloomier than i actually feel, and perhaps that underscores the reasons why I took a break from posting; it seems that when I do write it all out, it's just depressing. At the same time, I can't be an ostrich. How do you find the balance?

Linzsey, that chart was helpful. Thank you for posting it. After studying that and re-reading some journal entries, I'm now thinking that I might have a mechanical problem like a tear that will only show up on an MRI. I think I overtrained or trained poorly for a marathon that I walked a few years ago, because the first memory I have of this pain was immediately after that. It does seem to have ebbed and flowed over the years - I keep a pretty detailed journal - but the pain usually follows certain farm jobs that occur seasonally, and the rest of the time it's not a big deal. So I got lazy and didn't pursue this as aggressively as I should have done.

I think, too, that my pain threshold, which has always been ridiculously high, has changed since the RA entered the picture.

I'll follow up with my GP and see if an MRI can happen.

Thanks again for the information.

Joline, thanks - I agree, I need an MRI.

My left hip is my biggest RA or ? issue. I have a PT, a RMT, and a chiropractor. But no one seems to get close to solving the hip pain. I had a good session, started by telling them about the hip, they did their usual stuff and I was no different, although the other parts of me are much better.

I can barely stand or walk, and I have to put heat on it all the time, or just take more pain killers. Last week, I was sitting down on this tiny garden tractor, and somehow missed the seat and fell over, pulling the thing on top of me, and I couldn't get it off. Fortunately, hubby was just a few feet away in another part of the yard, and came when I started screaming for help.

I was mostly thinking about how I will ever be able to ride a bike outside again, with my balance being so bad. It wasn't till I went to make dinner I realized I had no hip pain at all. None! It was amazing! I think landing on the hip pushed it into place, and it was no longer subluxed. Sadly in 2 days it was hurting again.

After reading this thread, I am going to try and get a hip MRI, too! I've had it xrayed, and it showed nothing. But something major is wrong. My shoulders sublux in and out, and my neck, from old car accidents. This probably started after my car accident last year. Lucky I am still get treatments for it, although I settled the claim. I probably should not have settled, especially if I need surgery and rehab.

I hope you ladies will also find help for these issues that are in such a grey area.
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Linzsey, you're definitely not alone. You mentioned giving up a job you love. This is a topic much on my mind lately. So much so that I'm giving a presentation on it at a farming conference in February! I'd spoken there when I was 40 about leaving another career to start up a small organic farm. I'd given a second presentation when I turned 50, talking about what it's like to be a non-traditional farmer, and how I was experimenting with several revenue streams, and managing to get things going. I'd always hoped that when I turned 60 I'd go back and reflect on getting a successful diverse farm going. I thought I'd be talking about adding help and reaching out to the community by helping people who have food instability and so on. I imagined myself as a mentor to the younger people there, relating my success story.

Instead, I'm on the agenda with a presentation titled "I'm Not Dead Yet", and I'll be talking about managing the farm after a bad diagnosis. I'll be talking about how to decide what to let go, and when, and how to keep your sanity as you do so, and still find joy.

There's so many layers to it - the disappointment, the denial, and anger, and frustration - but there are also positives. I think my recent dreary mood is partly because in order to prepare for the talk, I'm really facing the bad parts squarely and recognizing how important it is to realize that this is for keeps, magical thinking is a waste of precious time, and refusing to make changes and acknowledge the new reality is not only foolish but financially dangerous. i thought i had my head around those things, but there is something different that happens when you stand in front of a mirror and practice relaying the points you want to make. You can't bs your way through it, you have to really, truly believe it. As it turns out, I still have a few gaps in my mature acceptance mindset after all, and I'm confronting those now.

At the same time, I'm recognizing some very real benefits: I do, literally, find joy in more things, and simpler things, than I ever did before. I don't take a good day for granted. I reach out to people more than I did before. I'm exploring different elements of who I am, deep down, instead of being totally focused on only one part. I'm recognizing that my worth does not depend on my productivity. I'm treating the vessel of my body with far more respect than I did before. I've got more of a sense of how I fit into a continuum, and how the things I can still teach my kids and grandkids are valuable. And even though I was working in a field (literally and figuratively) which is entirely dependent on the cycle of life and death, I hadn't entirely accepted my own mortality until my diagnosis.

I genuinely do have something valuable to offer at that conference. Perhaps even more so than if my business were still expanding as originally planned.

And a key point, and one which you and I need to explore, is the part about being more than just the job. You have other gifts, other interests, other strengths. I used to offer to help my grown kids by doing things like painting the woodwork in their homes or doing big landscaping projects. I can't tackle stuff like that now, but I recently spent four hours waiting at my younger son's house for a repairman, so that he did not have to take a day off of work to be there himself. My son was as grateful for that as he would have been for the painted trim. We still have something valuable to offer; it's just a matter of stepping back and taking a hard look at the reality, and figuring out what still works.

I've been fortunate that I can still play my horn and I'm finding more work than I can accept there - I can pick and choose now, and still pay bills. It's something that I hadn't focused on while I was farming full time. We are all more than one thing, and I guess sometimes you have to put one part aside and take up another part.

Also, puppy videos. Totally.

Thanks for asking! I'm on hold for a bit because scheduling anything (ie doctor's visit) in the next two weeks is nearly impossible.

Coincidentally, I started my older dog on a glucosamine / chrondoitrin (sp) supplement at my vet's suggestion. He didn't show outward evidence of pain (dogs often don't) but he was lowering himself incrementally to the floor instead of his usual joyful 'plop'. The vet suggested the supplement pro-actively.

Well, within seven days he was back to his former self, prancing around like a younger dog.

That's a particular supplement I'd not ever tried, and I was so impressed with the turnaround in Finian that I bought the human kind for me. I'm on the fourth day. Nothing yet, but it would be too early to tell.

It may or may not kick in, and even if it does, I can expect it to perhaps help with inflammation but it's not going to address whatever the underlying issue is, so it's not the full answer. I have removed some things from my diet that I felt were contributing to inflammation (months ago, when I found out that my blood sugar was too high and made some changes)

I'll do my best to get that MRI before the end of the calendar year, since my husband retires Jan 3 and we'll be buying our own insurance for awhile. I'd rather take care of it before making changes, even though we're trying to replicate what we already have as much as possible.

I feel my age most when i'm trying to manage something on my computer. I've learned tricks, essentially, but I know that I lack the intuitive grasp that my children and grandchildren have. I can never see the 'big picture' and apply a learned solution to a different problem, you know? And when they explain it to me, I feel pretty much like the dog probably feels when I'm talking "blah blah blah WALK blah blah blah TREAT" etc. I catch every fourth word or so.

You raise a good point. Luckily for us, the treatments for this disease have changed dramatically in the last two decades. But the references haven't caught up yet. I feel at times as if I've discovered a new planet and I'm the only one there - no disrespect to the community here, which has been helpful. But our experiences are all so unique. I want a map and a rulebook.

But I think my head is in a good place otherwise. I was beating myself up with some guilt trips - I haven't always made good decisions about caring for myself. Even though those things didn't necessarily contribute to having RA, they haven't made dealing with it easier. Carrying excess weight and being generally stiff and inflexible physically hasn't been to my benefit.

But I gave myself a little retreat time to confront each of those regrets squarely, acknowledge that yes, I could have exercised more in my earlier decades, I could have kept my weight lower, I could have managed stress better ................ and then I moved on, in the sense that those regrets have now been acknowledged, but there's simply no good that will come from dwelling on them. I am making better choices now, and carrying that guilt around serves no purpose.

(That worked so well that I applied it to various other regrets in my life, with equal success. I feel so much better now. They're all real, they should have not been swept under the rug - but by taking the time to sort of honor them and learn from them, I could release them. It's like applying Marie Kondo to your mental baggage.)

My whole life, I've always had more things to do than I had time to manage. My interests have always been wide and intense. I was never able to really concentrate on just one thing - my teacher told me that I would not be able to play my horn at a real professional level truly, because I wouldn't be willing to give up all of the other things in life. And he was absolutely right, and I've always been grateful for that dose of reality. I've found a nice niche and I get enough work, but it's not like I was ever going to play in Broadway pit or an LA studio or a major orchestra. And that's okay. I wouldn't have been complete without the farm or the other things that I do.

But what it means is that now, RA is making a few decisions for me. Some things are off the table now, but dang, that table's been groaning under a lot of weight for a long time, so maybe now I just focus on different things instead. All those days when I longed for a few hours on the sofa with a good book? I can do that now.

I often think of my mother, who went from (apparent) perfect health to nearly total paralysis after a brain aneurysm burst at age 59. I was too overwhelmed at the time with two toddlers, a chronically ill spouse, and a bipolar father to really have long conversations with her, something I deeply regret now (another regret!). But I did ask her one time, more tactfully than I'll relay it here, if she felt useless. She had always been a Martha, a doer, the woman who ran the church coffees and the community fundraiser and all of that. Did she feel frustrated now that she couldn't do those things, I asked? (Truly, more tactfully than that.) She looked at me like I was nuts and said "Well, I can still pray for people." Just that. Simple. I'm not a religious person in the way she was; she was very much a memorized-prayer say-the-rosary sort of person and that particular spiritual practice has never quite resonated with me. But I did realize in that moment that our connection to other people is a constant no matter what our physical bodies can do, and our 'worth' should never, ever be defined by our physical abilities. Mom maintained a strong sense of her self worth for fifteen years in which she could move one arm from the elbow down. She knew she was helping because she was praying for people, and thus she did not despair. I see now that this mindset is one of the last gifts she gave me, and it's one that I'm going to need going forward as I adjust.

I feel you, though, on the pain management. The inconsistency of it makes me nuts. There is a Thing happening with my left foot right now, a sort of deep ache in the bone near my toe joints. I can rule out a physical stressor or accident, so I'm guessing this is a new spot that the RA has chosen to pick on. It is not a huge Thing. But I look at it as if an alien has entered the house and plans to stay: what do I do with this? How do I care for it, what does it need so that we can thrive? Is it planning to stay? Do I need different shoes? How do I manage this new Thing? --- that sort of conversation goes on in my head with each little adjustment. Sometimes the Things only stay a few days, and sometimes they settle in for the long run. When they arrive, it's never clear which it will be.

Knowledge, dark chocolate, and puppy videos. That's the key! (Chips, before I started low carb.)

On a somewhat unrelated note, I had spectacular fall yesterday that taught me something about my RA journey.

It must have looked like something out of a cartoon. It involved the puppy (she is huge) and me being slightly distracted (fishing in my pocket for a tissue) and some unexpected deer bursting across the yard. The puppy bolted, all 50 pounds of muscle, and I wasn't paying attention and had one hand deep in my pocket, and I was pulled off my feet, literally, airborne, and went from 90 degrees in relation to the ground to zero in two seconds.

I landed on one side, thankfully not the bad-hip side, but took the impact pretty evenly along my body, as opposed to landing on just one spot. 24 hours later, I feel mildly bruised but don't have any lasting effects. It helps that the ground was pretty soft.

But here's the RA part, and it's relevant, I think. When I was recovering with a cup of coffee and square of dark chocolate, I realized that the relief I felt wasn't just because I hadn't been injured in the fall. I realized that ever since my diagnoses, to some extent, I've been holding my breath fearing a fall, an accident, anything that would injure my joints potentially.

I'm still doing farmwork and leading an active life, but I realize now that there was an element of fear, of treating my body like it was some kind of fragile porcelain. Now, some of this mindset is of course due to entering my sixties. But I've been thinking, as I descend the steep and somewhat rickety cellar steps with a basket of laundry, or as I navigate an icy spot on pavement, that I need to be careful - which is GOOD, I should be thinking that way. But my ADD brain always takes it further and starts imagining terrible things, imagining myself in a heap at the bottom of the cellar stairs or sprawled out on the driveway unable to get up.

And fear is a prison every but as much as actual physical limitations are.

As in so many things, the goal is to find the balance. We need to reinforce the cellar staircase banister, or perhaps move the laundry to the first floor, because we hope to remain in this house a good bit longer, and that will decrease the chances of coming to harm. But I can't be running disaster scenarios in my head nonstop, either - that's a horrible way to live. Identify risk, mitigate it, and keep living - that's the plan now.

Somehow, finding out that I could fall and not have it be catastrophic was a healing thing. It's sort of like accidentally dropping the lovely mug someone gave me and when it didn't break, realizing that it's stronger than I thought.

It's kind of encouraging, really.

Those home alert necklaces remind me of my father, who had multiple issues. He loved his necklace because whenever he was bored he'd push the button to cause a little excitement. I guess that's the exact opposite of your Mom! Fortunately, one of the first responders for the local ambulance lived next door, and most of the time she was able to pop over quickly and asses things and call off the troops. We used to send a couple cases of beer to the ambulance association's Christmas dinner every year to thank them for their patience.

It's been five days since I fell and I think it's safe to say that there's no lasting damage. It's the first time I've ever been grateful that our side field has a lot of voles burrowing underground. The spot where I landed was really soft due to all of their tunnels!

Wow Katie! Your mom sounds awesome. I've tried to be an intercessor, and a few times it has worked, but mostly not. My idea of useful is making breakthroughs in science, (no, I am not a scientist) or winning an Olympic medal, or writing an award winning book. Now, if I had not gotten RA, I would never have done those things, so why would I think they are important? I'd be happy if I could play my flute without pain and being restricted in my fingers. Anyway, I will take her advice., maybe a prayer mi is try is the way to go.

Do you exercise, Katie? I'm stop and go, because sometimes it helps, and sometimes it makes me worse. I did all my stretches and weights late last week, and my hip stopped hurting me. Also my back. I can walk up stairs with help. Before I couldn't walk stairs at all.

I know you are active, but maybe some targeted exercises might be the answer. The ones I do cone from dance, yoga, and physiotherapists. I used to use 15 lb free weights, before I got fibromyalgia in 2010. Went to 12.lbs till my med failure in 2015. Then I worked up from 2lbs yo 8, got hit by a car, and the seatbelt dislocated my shoulder and tore a muscle. So, back to 2 lbs, more reps. So, sometimes it is not RA. Yet, if I had been stronger, maybe my muscles would have held things together better from being in shape? Who knows.

I do hope the MRI shows something, and something fixable. I know we should be content,, but for me, having a name and treatment gives me hope things can improve.

Some progress, I suppose.......and least, some new things to report.

I had an x-ray of my hip and lower spine, because in order to get an MRI approved, a recent x-ray would be required. It showed trochanteric (hip) spurs that had developed since the prior x-ray (2016). There's also some narrowing between spinal disks. My GP told me that he wouldn't be able to swing an MRI approval based on that, and referred me to an orthopedic specialist group. He feels that they'd have the clout to get me the MRI, but that I'll probably need to have a cortisone shot first to see if that would help. He feels that there may be a small ligament tear or an impinged nerve. To my way of thinking, a cortisone shot might reduce pain and inflammation and if so, yay, but that still wouldn't give me an actual answer as to the underlying cause, and sans answer, I do not know how to best proceed with exercise so that I'm not making anything worse.

Complicating this is my husband's imminent retirement. And complicating THAT is the fact that his company is actually switching health care providers for employees on Jan 1. Greg will work two days in January, instead of retiring Dec 30 as originally planned, because his employer offered to pay for our January health care if he would do so - a nice gesture, since it will save us quite a bit of money.

After January, we'll be paying for our own health care.

If you're outside the US, this might not seem like a complicating factor, but what it means is that my insurance will be underwritten by potentially there different sources over the next eight weeks (we have not yet chosen our provider for February and beyond, so it might be one of the prior two). What this means is real terms is that I'm a bit toxic at the moment, as no company wants to shell out for an MRI for someone who's either leaving within days or has just joined. I don't want to sign on with the specialist, who is approved under my current plan, without being certain that i can continue with that doctor under a new plan. And the extra paperwork is ridiculous.

In short, taking any steps on the cusp of insurance changes is enough of a burden to really raise the question of considering delaying until things are settled down in February, by which point we will have our going-forward insurance chosen and in place.

Obviously if it were an emergency situation it would be different - we do have coverage, it's just that the provider's going to change twice in the next few weeks and that's a bureaucratic nightmare. What a ridiculous system we live in - but I, at least, do have health care, and so many people do not. I can't really complain.

My plan is to call the suggested orthopedic practice and set up the initial appointment - I'm assuming for non-emergencies they have a wait anyway, so I might as well get booked for an early Feb appointment. In the meantime, I'm going to return to my trusted chiropractor with my xrays in hand. Perhaps i shouldn't have stopped going for regular sessions, but he's a good distance from here and I just got lazy about it, I guess. I'll start that up and see if he can provide some relief.

I ran all this by the rheumatologist at yesterday's appointment (see newer post for updates on that) and she felt this was a reasonable course of action. She also felt that the bone spurs on my hip weren't related to the RA / PSA but were 'regular' osteoarthritis, although she said it's impossible to ever be certain.

To answer Marlene's question about exercise, you're right, I'm active but not 'exercising' in any mindful way, and that's a gap I intend to start working on now. My hip hurts when I climb stairs or hills, and my favorite walking trail nearby is quite hilly - I'd really like to be sure I'm not exacerbating the hip problem by walking there. I'm watching for the low-cost gym memberships that are advertised every January, looking for a place with a pool, so I can start to swim regularly. I think that might be the best choice, and I'll look for a place to walk that's flatter and safe. (Our rural road is not, as there is no shoulder, there's lots of deep ditches on each side in places.)