thanks for sharing this, katie.

my best friend, who has rheumatoid arthritis (go figure) just had her 32 year old son die of connective tissue cancer in 8 weeks, this June: diagnosis (he was skiing one week) to death - so her rheumatoid has been put in perspective, of course. with rheumatoid she had to tend to a losing battle in all of 8 weeks and watch her progeny pass from this earth.

i notice in your posts Katie that it seems that you already have a good attitude period about life Katie - so buck up stuff is going to hit you the right way. the friends I have that are depressive and ruminative tend to take their chronic conditions (some of my friends have MS some Lupus, some type 2 diabetes) - in a different way.

someone else would have heard that comment and because of their pre-existing personality dismiss sobbing out into the waiting room to their spouse.

all chronic conditions suck. but death sucks even more. living some kind of joyful with debilitation. read atul gawande's being mortal. i found it helpful.

Depot

Yes, I'm familiar with it - amazing to read! I think one reason why I've kept my head in a good place with this is that I've already lived far longer than either of my parents, and, at 57, I'm at an age where one's mortality is no longer quite so hypothetical, and physical abilities are no longer taken for granted. This may have affected me entirely differently if it had been diagnosed when I was younger. I'm also in a profession now, as a farmer, which pretty much consists of orchestrating an annual dance of life and death, rebirth, regeneration, and countless unexpected developments. It sort of takes away the surprise factor when it comes to the fragility of your own meat suit, as one of my friends says.

I haven't got the luxury of running out to the waiting room into the arms of a spouse. I've got the spouse, but HE'S dealing with depression (and never in the waiting room) and, well, let's just say I've learned to adapt. I might also be reacting differently, perhaps more emotionally, if it were an option in the first place, but it's not.

And I do have several reliable emotional outlets. When the need arises I have a full-out personal pity party, in the car by myself, and I curse like a sailor. It lets off a lot of steam and has fewer side effects than, say, drinking heavily, which would have been choice #2. It might have been choice #1 but I can't handle the extra calories right now, and, of course, all the drug interactions are uncool. Also - total music nerd moment here - I have a great outlet through rehearsal and performance; every cobweb in your brain is blown out when you play the horn parts in Mahler.

I am truly sorry to hear about your friend's son. My children are in their thirties, and......I can't even imagine. It would be the worst thing I could experience, and I hope she finds whatever grace she can. I'm sure your friendship and support mean more to her than she can express.

I think it's an excellent way of putting things in perspective. I have relatives who were in the Holocaust, so I learned early in life what is horrific and what isn't. RA is miserable and tedious......but in reality it's nothing compared to what others have experienced.

Here's another thought: I take 11 drugs everyday. Only the Folic Acid is a supplement. No vitamins, etc. All are essential and I'll be on all of them for the rest of my life. None of them are Pred, none are painkillers. These drugs keep me functioning well.

So when I hear people writing about being horrified about taking a drug for the rest of their lives.....well.....

This is a very wise post. I wish someone had told me this years ago!

In 2010, after mthx and Kineret failed, and my foot reconstruction was still hurting terribly a full year after the surgery, I remember being in the shower one night. I looked at the reconstruction foot and started to feel sorry for myself. Then I looked at the other foot, which had gotten so much worse jumping on it during recovery with a walker. Then I looked at my hands and just quietly started to sob. I went from sobbing to crying, to crying loud, to screaming. Meanwhile, my body just froze up. I couldn't lift my hands to shut off the shower. I was screaming with my mouth, and totally immoblie. Which of course, made me scream even louder.

My husband, who is half deaf, came in to see what was wrong. I could not stop screaming to tell him what was wrong. He turned off the shower, lifted me out, and then dried me, dressed me, and put me to bed.

Worst pity party ever! And all the time, I was thinking about how RA had damaged me, and was going to continue to damage me, until I was a totally disabled "cripple" to use my words!

Well, I heard the voice of God saying, not harshly, but firmly, "No more pity parties!" I felt that icy slap, and it was what I needed. I stopped screaming, although the sobbing continued for quite a while.

I would love to say it was just histronics, but it really wasn't. It was some kind of massive panic attack, or some kind of loud catatonia. (Is that even possible?) It was the worst I ever was, and probably will ever be.

So after that, when I started getting hysterical about RA, which was usually about a med failure or something similar, I just told myself, "No more pity parties!" And they did stop.

Well, except yesterday I started doing stretches and weights. It was hurting everywhere. When I went to do the universal, I literally could not lift the weights I had been doing only a few days earlier! So, I confess, a "small" pity party, helped by a good night's sleep.

While this is really a terrible disease, I agree we need to remember that we are not alone, and other people have suffered much worse. That doesn't make our suffering unimportant or less, but it does give us a different perspective. I used to have a lot of depression. One thing RA did to me, was realize that relatively speaking I had it well off. In fact, I will go back and look at my diaries and journals, before RA and wonder how I could have been so unhappy when I had nothing wrong with me!

So as a cure for depression, RA worked! Not that I would advise anyone to acquire RA to get rid of depression! LOL

Great post, I hope you don't mind me sharing on this thread!

Ya, life's a bitch, but RA just sucks. Gotta take meds just to try to keep moving, there's never going to be a cure and we're all trained in educate people on the difference between OA and RA... RA can kill you. How? Damned if I know, but I think we all probably go through phases where we get a new symptom and do a google search, to see if that's related to RA. As depot said, chronic conditions suck, but death sucks even more. Well, easy for her to say. :)

I'm in a phase of my life (I'm 69), where dear ones are dying, some of them my age. The latest to go was an extended family member, who I saw at Christmas. He was not far beyond a not great TKR, which I could relate to, but 3 weeks later he was dead from what was probably a ruptured aortic aneurysm. I don't know details, but the backward trace was a surgery, loss of blood, organ shut down and renal failure. So, one thing you may learn about RA is that it increases the risk of atherosclerosis, which can wreak havoc in your vascular system, and when I read the radiology report of every stinking MRI or CT, I see "calcification " here, or there. And, I've got a fucking abdominal aorta aneurysm to add salt to the wound.

So, my point is simply to take your meds, keep your great attitude, love all of what youcan get from life. You're gonna die, maybe it'll be some enigmatic manifestation of RA, or something else entirely unimagined. Take your meds and shut up! :)

Btw, I had 2 near deadly drug reactions, To MTX and Remicade, in my first 3 years of RA, but we don't have good choices other than good drugs, and I'm a lucky boy, going on 9 years on one drug.

But, Katie. You're a horn player? Mahler? How. Cool. Horn players have great lips. I played horns (e-flat horn, trumpet, baritone and French horn), but dropped out too early, and admire those who hang on. Have you seen "Mozart in the Jungle," on Amazon Prime? I think you'll get a kick out of it.

Sorry for any offensive language, ladies but think context! :)

I think a true good attitude, as opposed to denial, is based in reality. I'm well aware that the road ahead could be rough. But I also know that without RA, it still might be. I mean, I'm working with a refugee family right now, and when they fled Syria they had to decide, on the beach, which of their family members to take with them, because at the last minute they were told there wouldn't be room for all of them. So, um, yeah. Perspective. Used to have a nun in grade school who would bark at the second graders "Be grateful! You could be hit by a car tomorrow!" and while that did, of course, instill lasting psychological damage in most of the seven year olds in the room, the old bat had a point. And I know that we have choices as far as how we react to things. That's one of the amazing things about humans - two people can have the exact same experience and react entirely differently. Some of it's hardwired, sure, but still, we can consciously shift our attitudes.

I grew up with two very different and very complex parents, both of whom were handicapped (nothing at all related to RA). One was pleasant, funny, charming, but was extremely passive about asking for help or communicating problems to doctors - sort of a magical thinking thing, I believe, that if she didn't give it a name it didn't exist. The other bitched nonstop, made every spilled cup of coffee into high drama, threw tantrums about daily challenges, but was completely on top of the medical care.

I decided early I've got DNA from both of them and I'd better do everything in my power to encourage the good genes, because if I developed the worst of each of them, I'd be a total whack job. I tried to think of what I was witnessing at home as a grocery store, and I could pick personality traits off the shelves and put them in my own cart. It's not that simple, but on the other hand, I think it worked better than just passively sliding into whackjobness. Can't change the fact that I have RA, but I can change my attitude. It's the Serenity Prayer in capsule form. Sister Mary Car Accident would be so proud.

Yes, Buddhacat, French horn. I spend hours a day making fart noises into an expensive piece of tubing and I get paid for it. Crazy, huh? Performance degree a long time ago, took a teaching gig to pay the bills, couldn't play too much then because high school band directors don't really have that much flexibility with schedules. But now I'm farming full time (if it seems an illogical transition, the connecting factors are dealing with shit, and there can be tremendous joy.) So now I'm back on the circuit in a couple of ensembles and orchestras and free-lance stuff. Haven't seen "Mozart" yet, but from what I understand, it's practically a documentary!

Fair enough, but I also look at this support group where it is safe to vent out frustration and self pity and grief, making it possible to get rid of it and move on in the "real" world.

As you absolutely should [vent out frustration]! Keeping it bottled in is crazy.

Still, we all have to step back and look at the big picture. So while this is a venting place, I like to think of this group as a place where things are reframed and put back into perspective.

Safe places to vent are critical. And, I know that people here understand. While there are some outward manifestations, this is something of an invisible disease. And of course, it manifests different in everyone. It makes it a hard sell in the rest of the world.

Neat that you are a French horn player. I am a flute player, and I believe playing it has either helped my fingers or damaged them! Probably both! (My little finger on the right hand has to reach and constantly be pressing down except for D, and low C and C#, so it has a swan neck deformity, plus an RA nodule that won't go away.) But it does motivate me to do hand exercises, and keeps me flexible, and also sensitive.

I used to play sax and flute, as well as sing in a rock band. Then I decided to get some training, and did a bunch of Royal Conservatory of Toronto grades and theory, before I got asthma and could no longer hold the notes long enough for the phrasing on the advanced flute pieces. I practice a lot, and play once every three weeks as part of a worship team in church. We are all old rockers, it is pretty funny the spontaneous songs we sometimes break into, and all of us knowing our parts. Things like Margaritaville, and the like! Of course, I became a school teacher and taught band and elementary music for about 10 years. RA spoiled all that, of course!

Well, French horn is a particulary beautiful instrument, no wonder you enjoy playing. And being able to move into some performing groups must be wonderfully fulfilling for you!

Marlene, my master's thesis was on physical injuries suffered by instrumentalists from repetitive use, poor posture, etc. It was for my M. Ed, not something in a medical field, more addressed to teachers who are not taught to look for things that can cause problems later. There were some small deformities to fingers in wind players (it was a smallish sample, less than 500) but nothing statistically significant. But it's occurred to me that you might have been taught and might have made the switch to an open hole flute before the removable training pads were commonly used. The premise is that someone moving up to an open hole flute can play it with the pads in the same as a closed hole instrument, then take one or two out, usually for the B and F holes for the pointer fingers, and then A and E, and so on until they're playing it completely open. (You probaby already know this) You might want to get a pad for the D and then you could skimp a little on the reach. And it is possible to get a tiny extension soldered on to the D#-Eb trill key to allow you to reach it without as much of a stretch. There is a place in England that retrofits instruments for wind players who have been injured in accidents, etc, and need to modify instruments. It's been ages since I heard anything about them, so I don't know if they're still around, but I'm betting you'd have some good resources in L.A. Anyone skilled enough to repair a good instrument probably has the skills if you can show them what you need to have done.