A doctor once gave me pretty scary test results. I asked: "Should I worry?" He replied: "I'll tell you what I told my mother: The day I read a medical journal article that worry helps or can change the outcome, I'll let you know." I remind myself of that every time my mind gets into its hysteria....spinning out of control as I search online for every possible scenario! Meditation helps me when I get into that kind of downward spiral of worry and/or fretting. If you don't know how, just take deep slow inhales and exhales when you feel out of control with worry or panicky.

I can also share that I was faced with a life of being in a wheelchair at one point in my RA journey and here I am at age 72 in full remission, walking miles and doing aerobics 3x week! Who would have ever thought? Worry did not create that outcome. Putting one foot in front of the other and taking each day as it came...combined with being an active advocate in my health care is what worked for me.

I used to worry, however, a good deal about how I would possibly survive without health insurance. My health insurance was through my employment and I was divorced and not on my ex's insurance. I had started that job after my divorce when I was already in my 40s and in order to keep it on retirement, I needed 30 years of service! I could not see myself working into my 70s!! So, I worried about that. Then, at 58 I became totally disabled and unable to work. To my astonishment, I found out a well-kept secret! If you went on disability you kept your health insurance even without 30 years of service!! I had 11 years in and was thus vested for retirement. Disability, not being able to continue to work - the thing I was so afraid of - proved to be a Godsend for me!

Another constructive thing I might suggest is looking into Long Term Health Insurance. I got my policy decades ago while I was still working but I already had RA and was still eligible. It's expensive but has given me a great deal of comfort and peace of mind!! It prevents the worry of being a BURDEN!! Worth every penny I pay for it!

Great post Katie, and advice both Katie n warriorgal. When I'm "spinning" I resort to meditation. It works for me I encourage everyone to try it.

Excellent post Katie.

Right now the things I fear the most are not about me or my health, rather about my son and what he will go through during his lifetime. All I know is there are things I can teach him about making good decisions and doing the right things, and anything else is out of my control.

I have learned that I cannot change the past, but I can learn from it. I cannot control everything in the future and try to focus on only the things I can.
I think of the serenity prayer whenever I start feeling fear spin up inside.

And Warrior - I love that quote from your doctor. That's a good one!

Well, I don't agree with the evolutionary stuff, but I do agree that we should not be constantly worrying over this disease. I have been really bad about this, especially in the last 2 years, since my meds failed. Always thinking way into the future, and what will end up happening.

I have been getting progressively worse the last month or so, with more and more symptoms. I got some blood test results, which confirmed this, doubling my CRP and putting it well above the range of normal, for the first time in 15 months. My "worry" was that Orencia was already failing, and there are no biologics left I can try.

I took my mthx shot that day, and I woke up in the early morning the next day, and my hands were no longer stiff and hurting. I am convinced something was wrong with the former vial, although I have never had that happen in 5 combined years of being on injectable mthx.

But, that night, I didn't worry, and decided to take it one day at a time! A first for me! And what a difference a day makes!

For those who are Christians, here is what the Jesus says about worrying and anxiety?

"Who of you by worrying can add a single hour to your life?" Luke 12:25.

Whether you believe in God or not, or believe in a different god, these are still good words of advice, not just for RA suffers, but for everyone!

Here is another one, which may not apply to some people. This is something I really need to memorize and follow.

"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God." Phil. 4:6

Good quotes (?) Marlene. So sorry you are in pain!! And nothing left to try???

You've tried simponi? actemera? xelajnz??

If so, my heart breaks for you and I will be praying for something new.

the years that have passed, with this disease - closing in on a decade, have taught me what I need to know, my deeds forced, a new reality birthed, the kids kind of launched, I have already coped. remembering the fear of wondering if I would fail working 50 hours with he disease no longer paralyzes me but that isn't because I am cocky or new age-y - it's just because I have done what I set out to do for the kids mostly.

My best bud who has RA - that wonder woman I happened upon in local in person community RA support group lost her 32 year old son to (connective tissue) cancer this past june, in 8 weeks diagnosis to death, his athletic skiing and new dad life to drinking assisted suicide medicine in Oregon 8 weeks later. When we were there for his passing this June both of our RA states seemed inconsequential of course.

So as two friends with RA we have watched one (her) loose her house, her business and her son from the RA. i watched it. how do I minimize something like that? I really can not. she has watched me give up my spoons only to work and parent. Yeah yeah it gave me reflection and acceptance - but first there is the new reality. Then there is the acceptance.

how much prowess you have at resiliency and flexible response depends on so many factors: safety nets, financial supports, immediate and extended family supports, and degree of dysfunction. This shit can't be compared. because we have folks at disparate degrees of function and different phases of life from kids on here with JA to super elderly to everything in between.

Today when I want to laugh, I call RA bud. She is that resilient. When I want to pray, I talk to her son. When I want to be grateful I think that we should both have an RA you tube channel that focuses on laughter.

good luck with that - is our favorite RA parting phrase - it means we will get it done in RA manner which will not be pretty but it will be funny. We love making fun of each other.

There used to be a large group on here that made fun of the process of this disease now and then just for shits and grins. we have become very super full-time hyper clinical lately. Conversely, I use her for laughter a LOT more these days and find it joyful to give the disease the finger with aplomb. that's my recommendation. you get to win some days (laughing)

depotblue

Well, this might make you smile, depot - my kids just pointed out that I better be careful if I give anyone the finger, because I'll be pointing to the wrong person with my crooked fingers......sigh!

Thanks Depot for reminding us that laughter is often the best medicine -- humor, sarcasm, and all that fun stuff that makes us chuckle for a moment can help deflect fear and anxiety.

Hello
I am new here and a little confused .I had a little bump on my middle finger for a 2 months,went to GP and they took a x ray it looks normal,did blood work and RA is 19, but the lab says 14 is limit and other all tests Sed ,antibody ccp c reactive enzyme testes and some other all of them are negative I did not call the doctor yet a little scared .So What do you think? I dont trust doctors unfortunatelly. I hate taking pills and making big pharma rich..More of into a Chinese medicine
thanks for your time

Hi, Zuzu. I won't pretend to be able to interpret your blood work numbers. But my RA experience started (I thought) with a bump on my finger, too. Later I realized that I'd been exhausted for a long time, but it was so insidious that it had become my normal and I didn't really recognize it. My finger lump progressed to really swollen joints and pain in my hands, and some of my fingers are now a little twisted. It's not something to mess with. RA doesn't go away on its own, but it can be controlled. Most of us started out really opposed to taking meds, but when your options are to do so or to lose the use of your hands, things get real pretty quick. I'd suggest that you make the appointment and start the process, because that will give you more information, and with this disease, more information is always better than less. If you decide you won't take the meds, you'll be doing so with complete knowledge of what you're risking. And if you do decide to take them, might as well start the ball rolling; it's not going to happen all that quickly anyway, you'll have to wait for the appointment. It's frightening, but you will have a lot of support here to help you sort it all out.

My advice, after having this disease for 20 years and having a bit of a science background, is stay away from folk medicine and quack nostrums. They really do not work, except for perhaps placebo effect.

If you have this disease, do yourself a favour, and get on the strongest meds your doctor will give you right from the start. The newest protocols are that hitting the disease hard in the beginning has been shown to prevent the disease from becoming severe, like me! Sincerely, the disease is so much worse than almost any side effect I have personally suffered, although there are probably some rare people who have had bad reactions to the medications.

Science is about double blind testing, to see if the meds really work. None of these folk remedies have been tested for effectiveness, let alone side effects or contamination. The dosing probably is random, too!

I do hope you do not have RA, but if you do, you are welcome to come here and ask questions and share in the conversation!

I have no hope been suffering for two months no insurance because I have a new job dont thonk I will make it til insurance starts. I cry while i work the pain is unbearable I can't call out because I'm new, my family dr gave me Naprosyn then sulindac it doesn't help. I am ready to throw myself off a cliff every day i get worse

Something that I do when I start worrying is to come here. There is some comfort in reading about these matters with like minded and bodied people. I'm also in a 12 step program and those folks have been so supportive. They also teach me to rely on God. Thank you all for being there and sharing so we don't feel so alone.

what are you doing for work? is it full time? what do you have to do after work? I am trying to be in empathy inside your shoes. Your profile says you are age 47. I remember being age 47 with full time work and the kids waiting outside the commute's door back home. neither one of them drove yet when I was that age ( I had my kids later). When I was refusing mtx at work I was worse. I used to have to do a lot of physically strenuous stuff from time to time. sometimes my brains would tell me that i was not capable of bearing up under this much pain. I remember. You are strong. I used to use offering it up to some greater place - like keeping the family together. Would that work for you? That type of rumination? Are you straight out on your feet? Shoes were an issue for me. especially when I wrapped the joints - but wrap them I did. I used every wrap CVS sold - and that seemed to be some comfort. I used to ice at night in bed across both ankles. can you ice when you get home? Pred is supposed to be a bridge but at higher amounts it can be amazing. Just depends on if your own family MD agrees or if you have co-illness's that preclude playing around with pred. Listen to your MD. when naprosyn did not work, I took 800 motrin. What date does the insurance kick in? Does that coincide with your new appointment with your rheumatologist I am guessing?

Katie - I am sorry for highjacking your thread - but you are such a nurturant soul, I have a feeling you will not mind.

hang in there Betti - you'll get there. Just think of the money you are bringing in now and how this makes the quality of your life better along with the insurance. I know cold comfort. But you are resilient. Hugs.

depot

Hijack away, dear Depot, I'm worried about Betti, too! Betti, you're not alone, you're not invisible, we can see you, and we understand.

And here's the thing with RA, Betti. If you break your arm, you go to the ER and the educated professionals do their magic: they x-ray it, set it, cast it, maybe give you some pain meds, and you're on your way. They're like superheroes swooping in to save the day. They know exactly what's wrong, because they have xray vision - literally. And the protocol for dealing with a broken humerus is fairly standard. The patient doesn't even need to be very communicative - the xray tells them what they need to know.

But there is no RA Fairy that will swoop in and wave a magic wand and make it all go away. With this disease, much of the responsibility is on us. We do have amazing professionals in our corner, but unlike that patient with the broken arm, we really, really, REALLY have to speak up for ourselves. They can't diagnose us without our input. They can't measure our pain level without our input. They can't tell if things are working without feedback from us.

And a lot of us, especially women, were brought up to not do that at all. We were told not to be 'pushy'. We picked up the not so subtle hints that it was more important to look good than to be smart. We were taught to be quiet. We were taught to respect authority, including people in white coats. I'm not going on a rant here, I promise, but it's germane to my point: many of us do not naturally have the skills to speak up and ask for what we need. And to insist on it when those needs aren't met.

I am willing to bet that there are some people right now reading this post who still haven't worked up the nerve to post their own story here. Because it's hard, it's hard when you've always been the person who takes care of everyone else, it's damn HARD to say "Wait. Stop. This is not working. I need another approach. Here is my situation: (blah blah blah). What can we do differently?" that is SO HARD for some of us to do.

But we have to. Betti, you need your job and you have to wait for the insurance; those things can't change. But what else can change? Can you enlist the help of friend, neighbor or family member just for a few weeks to take some responsibilities from you at home, so you can collapse when you get home from work? Do you have a manager at work who would understand if you said "hey, I'm doing the best I can and I will by God make this work, but I'm in a lot of pain right now. Can I take a fifteen minute break mid afternoon and stay fifteen minutes longer at the end of the day?" (or whatever. There's got to be some small thing you can adjust.)

Make a list of other things you can do to impact this situation for the next few weeks. Call your doctor and calmly explain that you need another approach. Find help; barter for it if you need to. think of small kindnesses that can make your day more bearable - simple things like a cup of hot tea while you're in the tub. Take a few extra minutes to make yourself look good (I suck at this, I look like a bag lady most of the time, but when I do try, it really does make me feel stronger). Keep a journal. Listen to all your favorite music. Eat some good chocolate. Pray, Break some dishes (I do this; my price limit is ten cents at yard sales, and when I need to..........sledgehammer. In the barn where no one can see me. Is that sick? I don't know. but it feels good.) If you write "drink heavily" on your list, cross that sucker out. This is not the time.

Dear Betti, people think being brave means rushing into battle to save your battalion, or rushing into a burning building to save a child, or jumping out of an airplane to skydive. Sure, those things require bravery. But......

Real bravery is what happens in the dark and quiet places no one ever sees. Real bravery is getting up to go to a difficult job when you're in pain because it's what you have to do. And YOU, girl, are doing just that. You're strong, Betti, and you're brave, and you'll get through this.

Those people who run into burning buildings get awards at televised ceremonies and everyone applauds them. But Betti (and everyone else out there who's fighting the fight and getting up on this Monday morning for another round), everyone here is applauding for you right now. When you go to work today, you have our hands at your back, okay?

Please, please post again, and tell us how things are going for you.