The truth about living with Rheumatoid Arthritis

#seronegative rhematoid arthrits

Rheumatoid Arthritis and how to keep chronic illness from taking control

controlI haven’t been posting much, because frankly RA has been kicking my butt lately.  So RA Warrior’s blog carnival about How do you keep the disease from taking over is very timely.

How do we all do that?

Firstly, sometimes I don’t.  Sometimes Rheumatoid Arthritis is my boss, and I do as I’m told.  Go to the couch.  Go directly to the couch.  Do NOT pass ‘Go’ and do NOT collect $200.

So that’s the first thing.

1.  Accepting that sometimes the pain is too bad, and you can’t win this fight today.  You have to rest, so that you can get up and fight another day.  Accepting this has allowed me to stop depression from taking hold.

What else?

2.  People.  My arthritic friends.  And one non-arthritic friend who gets it.  A very rare beast indeed!  Venting to a few people who do understand and don’t need to be reminded that I have RA, and that’s why I can’t come out to play today.  These people never tell me to just get more exercise, or get out more, or eat some sour cherries.  They sympathise, and tell me their stories too.  And they never, EVER play ‘my disease is worse than your disease’.  We sympathise and empathise and laugh and cry together sometimes.  These people let me be totally unreasonable and vent my emotions so that they don’t get bottled up and cause more disease.

Because I truly believe that negative emotions impact on our ability to heal.  So I need to get those feelings out…no matter how unreasonable, or silly, or painful to say.  Let them go, and take a little bit of pain away with them.

3.  Getting out and joining the world even though it hurts.  This is not the same as ‘you just need to get out more and everything will be OK’.  I painkiller up and try to join in with the healthy world, and if I can’t join in I get out there and watch.  So that I can still be included.  So that I can still be part of my child’s soccer game, or the back yard cricket game.  I tag along and walk slow around the dinosaur museum and take lots of candid shots.  I have the time to do that.  I don’t get out because I’ll magically be healed, as so many people seem to think.  I get out and try to be part of the normal world because isolation is the best friend of depression, which tends to hang out very closely with chronic illness.

Of course when I do this I need to steal myself against the people who don’t get it.  Those who say ‘I saw her out on the weekend and she looked FINE!’.  Or those who say “See?  I told you if you just got some air you’d feel better!’.

So that’s the next thing.

4.  I just don’t listen to the negative people anymore.  I smile and nod and don’t say anything, because let’s face it, these kind of people don’t listen to me, so why should I listen to them?  There is no use explaining to them that standing here watching the game is costing me dearly.  Costing me pain, costing me fatigue, costing me my afternoon, because I will probably have to spend it on the couch recovering from standing here for an hour and a half.  They don’t care enough about me to listen, so I don’t care enough about them to keep trying to explain.  They just take more of my energy, so I don’t waste it on them.

(Oh and when it all gets too much, see point 2 about ‘people’ and venting to the real friends who get it)

5.  Knowledge.  I have learned about my disease.  And I keep learning.  I don’t obsess…but I keep up to date.  I read about the latest drugs, and about those that have been around for a while.  I know what they do, and what to expect from them.  I read some very good blogs, and learn from others’ personal experiences.  And I don’t panic, or over dramatise.  The first time I experienced costochondritis, I felt like I was going to die!  But after reading a few blogs, I realised that this incredible chest pain was probably related to my RA, and not a heart attack, and it helped.  Knowledge is power.

6.  Hope.  As long as I have hope, I can keep getting up and fighting.  Usually this means hope for a new treatment option. At any one time I am either waiting for a new drug to be approved for me, have just started a new drug and am waiting for it to work, or I am accepting that the latest drug *didn’t* work for me.  When I get to the part of the cycle where I realise it’s been three months, or even six months, with no improvement, I really need that hope!  That something will work, that there is another option around the corner.  I keep up to date on the treatments that are available.  I look at medications, alternative therapies, and decide for myself if they might help me, or are worth trying.  Sometimes I try something, just because I need to feel like I am doing something.  Not passively waiting.

7.  Which brings me to exercise.  Exercise is key!  Some days I can’t exercise, of course.  Most days I can do something.  Riding a stationary bike puts very little pressure on joints.  Especially a recumbent bike.  Swimming is great, but I must admit I don’t enjoy it, so I don’t do it much.  Yoga/pilates is fantastic, even though it often hurts at the time.  Post class I feel stronger and more flexible.  No mean feat for someone with RA!  And I lift weights.  Very light weights for someone of my size and frame.  But I’m not in the gym to compete with anyone.  I’m there to improve my health and also keep depression at bay.  It’s another way that I feel I am fighting this disease, and not letting it take control.  I do as much with this body as I can.

8.  Perspective.  No matter how bad a day I’m having I always remember that there are worse diseases than Rheumatoid Arthritis.  And there are people with worse cases of rheumatoid arthritis than I.  I count my blessings.  I am still capable of many things.  I am not completely disabled.  I can still contribute to society, albeit in far smaller ways than before.

I once had a good career, and a husband who (I thought) loved me.  Now those things are long gone, along with financial security.  But I still have two wonderful children who love me and think I’m a great mum, even on my couch days.   I focus on what I have, and not on what I have lost.

9.  I blog.  Sometimes (as lately) I can’t blog.  I can’t write.  I can’t find the words.  But then, when I do get back to writing, it’s a release.  I still haven’t confessed to anyone in my real world that Arthrtic Chick is me…because it’s my safe place to vent and tell it like it is.  It’s where I can let my feelings out, and document my journey and share what I have learned.  And I have met some wonderful people through my blog, and I have been greatly helped by hearing their stories.

10. I give myself credit.  I am a single mother of two children, one with Asperger’s Syndrome.  I have severe Rheumatoid Arthritis.  I manage.  And I do it all alone.  I hope that one day I will have a partner again who will share some of this load.  But in the meantime, it’s just me, and I do a damned fine job of keeping the wheels turning.  I am very tough, because I’ve had to be.  And I’m proud of what I’ve achieved.  So I give myself credit.  And no one else has to.

EDIT!  Some of the great people who contribute to this blog have reminded me that I’ve missed a few things…so here’s a couple more.  Can’t believe that I didn’t mention them…they don’t belong at the bottom…

11.   I laugh!  I mean, I find things to laugh about.  I try to see the funny side.  Admittedly, not being able to open the juice bottle when you are thirsty and need to take your meds is not really funny.  But giving the bottle to your 12 year old son and asking him to open it for you kinda is.  I laugh.  I make jokes.  I see the lighter side (most days).  I subscribe to funny pages on facebook.  I watch a funny tv show.  Or a funny movie.  I find reasons to laugh and not dwell on how unfunny Rheumatoid Arthritis really is.

12.  I think positive.  This sounds trite…but its not really.  I am always looking for the bright side.  The upside.  The silver lining.  It is ALWAYS there…even if sometimes it seems dwarfed by the downside.  What you focus on is what gives you strength.  So I focus on the positives.  Sometimes the only positive I can find is that I don’t have cancer.  That still works.  There is *always* someone worse off.  And I usually don’t have to look far to find them.  And if I can, I help them.

Rheumatoid Arthritis and prednisone – there is no cure for Rheumatoid Arthritis

Prednisone is NOT a cure for Rheumatoid arthritis.

There is no cure for rheumatoid arthritis.  There are treatments.  There are ways to manage the disease.  There are therapies to manage the pain.  There is no cure.

Recently I’ve been posting on my personal page about the physically active things I’ve been doing.  Things like running.  Doing a Step class.  Hitting the gym often, sometimes doing two classes a day.  I’ve been posting this stuff because it honestly makes me so happy to be able to do these things!  It is bliss!  It is as close to normal as I have felt in five years.  I haven’t had a knock-me-on-my-butt-full-body-mega-flare in nearly three weeks.

That is the longest I have gone without a mega flare.  I’ve had twinges.  I’ve had aches.  I’ve had one or two moderate pain days.  But I haven’t had a severe pain day where I can’t get up off the couch.

In five years that has never happened before.

So I think it’s understandable that I’m feeling a bit of euphoria about my current physical state.  I know it can’t last…I am tapering down on the prednisone and with each milligram less, I feel the pain increasing.  I know what is waiting for me when I am off prednisone, and so I am making the most of this time.

The interesting thing is the comments I have been getting from people.  Some of whom should know better.  Some of whom are genuinely happy, if misguided.  Some of whom have darker motives.

People keep telling me how happy they are that I am cured.

*dumbstruck silence*

I am NOT cured.  Prednisone is NOT a cure.  It is a reprieve.  A pain holiday.  A short, and very necesary break from the pain, stiffness and fatigue of rheumatoid arthritis.

It is not a cure.

Prednisone means I can run and do step classes.  It also gives me a resting heart rate of about 95 bpm, anxiety, insomnia, and shoots my blood pressure too high.  Long term it will rot my bones and give me osteoporosis.  It will mess with my blood sugar levels and cause diabetes.  It causes cushings syndrome.  It can cause depression and other psychiatric symptoms.  The way my doctor put it was pretty succinct…’every bad thing a drug can do to a body, prednisone will do’. But when it also takes severe pain down to mild pain, and allows me to live a relatively normal life, it is oh so easy to forget that.  It is oh so tempting to just forget that.

Anyone who has a moderate to severe form of inflammatory arthritis has probably been on prednisone at some point.  It’s often used to get a bad flare under control.  It’s also used long term, but this is a last resort, for those that don’t respond to anything else.

So far that has been me – prednisone is the only thing that can get me close to normal.  I am on a bunch of other drugs.  Most notably methotrexate…I’m waiting for that to work.  I’m only just at a therapeutic dose now, however.  So IF it helps, I might start to feel some improvements in about 6 weeks.  If it helps.

It’s all so slow.  In the meantime, I need some prednisone to get me through a very tough patch.  I have been in pain for five years.  I need a holiday.

I am not cured.

Christmas 2010 – another year with Rheumatoid Arthritis

Christmas 2010 draws to a close and I am (finally) back home, sitting on my couch and reflecting.  This is my fourth Christmas with Rheumatoid Arthritis.  Or is it fifth?  When did it really start?  Seems a long time now, and yet I still remember what life was like ‘Before’.  But while I remember what that life was like, there is now the realisation that life will probably never be like that again.

But life is still good.  I feel lucky because although many of my joints ached today and last night at the traditional family gatherings, I was able to join in, and converse, and enjoy people’s company.  Other years I have been couch bound.  So this was good.  Mostly.

However, there was one thing I did very differently this year.  I was more honest. Not completely honest, admittedly.  Cos lets face it, those who don’t suffer this disease probably couldn’t take complete honesty.  But *more* honest.

For example when my brother in law asked “How are you doing  today?” instead of answering “Fine.” (as I usually would)  I said “Doing it a little tough.  Quite sore, but glad I’m here.”  When my old friend whom I hadn’t seen in a year asked the same question, I told her that I was up and down, good days and bad days.  We used to go running together.  We did that for years.  She asked when I would be getting back into it.  I told her sadly, I definitely can’t run anymore, and I wouldn’t be joining her running anytime soon.  Which makes me very sad, cos I used to love doing that with her.  Last year I told her I was going to kick this arthritis thing in the butt this year and would be back on the 5km track with her.  But that didn’t happen.  The magic meds didn’t kick in.  I did not run anywhere.  But I did say that I can go swimming, and I’ll join her at the pool sometime soon.  So it’s not all bad!

And when my mother asked me to carve the roast, I politely declined, and explained that my hands were too painful.  I couldn’t even cut my own meat on my plate, actually.  But I ate lots of veg, and I LOVE veg!

So in the end my Christmas was great – but not ‘normal’.  Or not the old normal.  I guess it’s the ‘new’ normal.  And while accepting that fact might be a step forward…it also feels like a step back.  Like giving in…But what is more stupid than wasting time worrying about what I can’t do anymore?  I could be spending that time doing things I still can.  So I will.  If there’s one thing that getting sick has taught me, it’s appreciation.  And at least now, I definitely appreciate the things I have, the people who matter and the things I can still do.

Who am I?

So who am I?  I’m Arthritic Chick!  Five years ago my hands started to hurt, then my feet, then my knees…until almost every joint in my body ached.  Even my ribs.  Who’d have thought that ribs were joints, eh???

Anyway, five years, countless tests, therapies, drugs and doctors later, I have tried countless treatments and gathered diagnoses. (I have had everything from rheumatoid arthritis, ankylosing spondylitis, undifferentiated spondylitis, undifferentiated inflammatory arthritis, mixed connective tissue disease, and my personal favourite, “symmetrical, bilateral, inflammatory polyarthritis with axial involvement“…try explaining THAT at dinner parties!).

I have reached a certain peace with my life as it is.  I have accepted that I will probably always have pain somewhere in my body. At the same time I realise there are many who are FAR worse off than me.  I have days where I scream and cry that it’s not fair, and days where I climb (metaphorical) mountains and know that one day I’ll climb the real thing.  I’m up and down, and sometimes I go around and around as I try to find some answers, or meaning in all this.  My life can be ugly and beautiful…and while this disease is FAR from a gift, there are good things to be found here.

So this is my blog.  I hope I’ll connect with lots of other people out there like myself.  I’ll be writing about my disease, my pain, my battle with doctors…and the beautiful people I’ve met along the way.  I hope you guys stick around and write back!

A brief history

Pain in hands, pain in feet, then pain in knees.  Trip to rheumatologist (after waiting nearly a six months for an appointment – why aren’t there enough rheumies in the world???) who tested me for everything under the sun…lupus, ms, RA, myeloma, lymphoma, leukemia, all kinds of cancer…very scarey time.  Everything came back more or less fine .  A few autoimmune markers…positive ANA, positive anti-CCP.  Negative RF.  Kidney function not great.  Strange rash on my face that would come and go.  Sore, crazy dry eyes and  mouth…but negative anti-SSA/RO antibodies.  Raynaud’s phenomenon.  Symmetrical bilateral arthritis…very painful, but non-erosive.  A bone scan showing synovitis in my hands and feet…..AND hips and shoulders.  Small joints affected, large joints affected.  So..Mixed Connective Tissue Disease, which is a combination of several autoimmune diseases. Autoimmune diseases are all about criteria.  Meet the criteria, you have the disease.  But sometimes you don’t quite meet the criteria, but have many of the signs and symptoms. I am that way with Lupus (SLE – systemic lupus erythematosus with the focus being on seronegative Rheumatoid  Arthritis!  Not cancer! Yay!!!  Diagnosis!!! Reason for all this pain.

Thank the gods!  Now let’s get started on making it go away!

Then I googled.   Wait…Not Yay.. DefinatelyNot. Yay.

No cure?  What do you mean, no CURE???  Can’t medicine cure everything?  Er, no actually.  Doctors are not God.  Shame about that.

But there are *treatments*.  Oh, OK.  Good then.  Gimme those!

Wait.  Not so fast.  They take time to work.  Lots of time.  And there are side effects.  Some of them are quite unpleasant.  E.g. one of the side effects of methotrexate is…DEATH.  That’s a pretty severe side effect, as side effects go.  Wait…let’s just start with the safer drugs…

So it began…I refused methotrexate at first. I refused to believe I was that sick. Denial.  Possibly a very big mistake, but no use worrying about it now.  So I went with sulfasalazine, plaquenil and celebrex. Then I swapped the celebrex for diclofenac, then mobic, then ibuprofen, then finally naprosyn.  Which helped some.

Next was tonnes of prednisone – finally some relief! And the realisation that the doctors were right – I have moderate to severe rheumatoid arthritis and the denial had to end. So on to methotrexate…imuran, arava…and a few more I’ve forgotten. In all kinds of combinations.   Long journey.

And in the meantime, my RA has progressed.  I have lots of pain in my Sacroilliac (SI) Joint, my ribs often ache and sometimes the pain is horrendous (costochondritis), my elbows won’t straighten most days and my shoulders…well, lets not even go there. Lately I my jaw has started to ache…so soft food only!

Methotrexate has made me worse rather than better.  It is the gold standard treatment for RA, but I’ve had to stop taking it because of the side effects.

The drugs from here on in get worse and worse and scarier and scarier. But life with Rheumatoid Arthritis is pretty scarey too. I live in hope of finding the magic combination of drugs and lifestyle that will make me whole again. And allow me rejoin the real world.