The truth about living with Rheumatoid Arthritis

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Rheumatoid Arthritis and facebook and friends and facebook friends

what does a rheumatoid arthritis flare feel like

Image source: http://www.anesthesia.org/images/pain3.jpg

Facebook friends are not REAL friends, said one of my ‘real life’ friends a few years ago.

As I’m packing for my trip I am thinking a lot about friends.  Good friends…the only kind really. Cos bad friends, well, they’re NOT friends…LOL.

I have heard that my NOT friends have been wondering how someone who lives on disability and (supposedly) has a painful debilitating illness can go on holiday alone with her two kids.  And how she can afford that.

Well, I’m cheap. I scrimp, and I save.  I don’t eat out much and I only buy essentials.  And when I get a bonus, or a freelance job, I fritter it away so it doesn’t get spent on bills.  I put my spare change in a jar and every so often I raid $10 out of my wallet and stick it in my cash stash. You would be amazed how that adds up over the course of two years!

So there’s that.  NOT friends, think what you like.  My ex-husband did not finance this trip. Although because we are still good friends, he has given me some cash to spend.  I will spend it on our kids, and he knows this.  He really wants me to spend it on *me* though.  I truly believe that.  Our marriage may have cracked under the pressure, but our friendship remains.  Not that it’s always easy!  But my ex-husband is a good friend.

Another good friend has loaned me a bag, and some bits and pieces to save me buying them.  It helps!  She has also listened to me plan and worry and doubt and wonder if I can really manage this.  And she has provided support and encouragement.  She reminds me that I am strong, when I forget.  She is priceless.

But the most amazing friend of all has just stopped by my house and dropped off a great big bag full of stick on heat wraps.  She has a pretty bad case of Rheumatoid Arthritis herself.  Plus she has Fibromyalgia.  She could really use these heat wraps herself.

They are adhesive and self-heating. They stay warm for around 8 hours.  They are for your lower back and hips.  My friend is aware that these joints have been giving me hell lately, and have been the main cause of pain and couch bound non-adventures of late.

They will give me untold relief and allow me to walk around, and keep mobile for many more hours than I could without them.  It is the most generous, helpful gift that I can remember.  I know she has had a rough year as well.  She could really use a holiday, I’m sure.  But there isn’t even a trace of envy or jealousy or bitchy snide ‘how can you afford that’.

She wants to make sure I have the best holiday possible.  She is giving up something that she says she has heaps of, and she got for free…but that isn’t the point. She is giving up something that she will need one day.  Her generosity is a very rare trait.  Her unselfishness.  Her caring.

And you know what’s funny?  I met her on facebook.

Don’t ever tell me that facebook friends aren’t real friends.  While my so-called ‘real life’ friends were making me feel guilty for not being their rent-a-crowd or looking after their kids anymore, I was getting to know a lovely lady online that I met in a facebook group for people who live with RA.  As we chatted we realised we lived in the same state.  The same city.  The same suburb!  In fact she lives about a kilometre away from me.  We share the same (wonderful) general practitioner (primary care doc?).  Our kids go to the same school.  We run into each other at the grocery store sometimes.  I wonder how many times we shuffled painfully, invisibly past each other previously, without even knowing that right there was a kindred spirit.

The irony of invisible disease.  Not only does it make us so hard to be understood and get support…it also makes it hard for us to find each other.

But find each other we did.  On facebook. We chat often.  She checks up on me when I am quiet, because she knows when I get quiet, I’m doing it tough.  I hope she knows that I think of her too, and how important her friendship has been to me.  We don’t actually see each other face to face that often.  Why? Well, y’know.  We have RA.

Friendship is not about how much time you spend in the same room.  It’s about communication, understanding, compassion…and fun.  I should also mention she has the most amazing sense of humour, and on days when I know she is in abject misery, she still posts funny anecdotes and makes a whole bunch of people laugh.  She is just awesome.

So don’t ever tell me that facebook friends are not REAL friends.

Rheumatoid arthritis, Enbrel and the next set of choices

painI’ve been quiet lately again.  I think most regular readers of this blog will know why.

Enbrel isn’t working. Or not working well enough.

I’ve taken 9 shots…I will take my 10th tomorrow.

I haven’t wanted to write this post, because I don’t want to brutally, coldly, analytically look at my results so far, and admit them.  Tomorrow I see my rheumatologist.  And while I love my rheumy, seeing her always brings some anxiety. A reality check. A taking stock.  A no-holds-barred look at where I am with my rheumatoid arthritis.

I’m a very positive type of person…I’m optimistic.  To the point of denial, sometimes.  I don’t get bogged down in setbacks (usually) but as we all know, Rheumatoid Arthritis is a serious disease.  It is painful. It is debilitating.  It is disabling and life limiting.  Even the most optimistic, glass half full type person hits the wall sometimes.

And the last two weeks, I’ve hit the wall.

Why?

The pain is much worse.  On 15mg of prednisone my life (on average) looks like this.

15mg prednisone, 1000mg Naprosyn, plaquenil

2 moderate/severe pain days per week.

3 moderate pain days

2 mild pain days

2 sleepless nights, where I lie awake most of the night because of pain.

1-2 endone (oxycodone) per day.  Targin (slow release oxycodone) or ms contin (slow release oral morphine) a couple of times a week – when I really need to sleep.

Gym 5-6 times per week.

Centergy (yoga/pilates) twice per week.

Power (Pump – lifing weights to music) twice per week.

And 2 or three cardio sessions – Spin class, either 30 minutes or 45 minutes.  Or cardio machines – cross trainer or recumbent bike.

On my very best days, I even run on the treadmill.  All of this exercise *causes* pain…but the benefits it gives me (muscle strength, fitness, cardiac health, mood boost) outweigh the pain.

It’s pain I can work through.  That doesn’t mean it’s mild pain – we RA chicks are pretty tough!

I also have 1 major knock down flare per month – 3 or 4 days of being bedridden by severe pain.  Some months it’s twice.

So that’s still a life that is severely impacted by Rheumatoid Arthritis.  That’s a life spent dealing with a lot of pain.  But that is still a functional life.  A useful life.  Dare I say it, even a happy life.

So where am I now?

10mg of prednisone + Enbrel.  Naprosyn.  Plaquenil. 

4-5 days of severe pain days.  Knock down days.  Full-body-mega-flare days.  Completely-unable-to-function days.

2 days of moderate pain.

I have been to the gym three times in the last two weeks. Twice it was a total fail.  I was unable to finish the class.  The third time I just sat on a recumbent bike and made the wheels go round for 30 minutes.  I guess I just wanted to be in an environment that I enjoy. My (previously) happy place. I ignored the fact that I wasn’t really exercising as such. I just needed to be there.  Out in the real world.

I don’t sleep at night unless I have taken slow release oxycodone.

I take 4 endone daily.  2 slow release oxycodone.  Just to function on my moderate pain days.

I am not exercising. I am not writing. I am not working.  I am not functioning.  I am just covering the essentials – keeping my kids fed, and clean school uniforms available.  I am not living.

I’m not taking my kids out.  I’m not helping them with their homework.  I’m not fun to be around.  I have needed to ask a friend to pick up my daughter from school.  (My son now takes the bus).  I’m not calling my friends, because I don’t want to complain to them.  They feel neglected because I haven’t been in touch, and asked them how they are doing.

I look exactly the same on the outside.

I make small talk if I run into an acquaintance at the store.  When people ask how I am, I say “Good! And you?”

But this is the truth.  I am not living.  I am existing.  I have two friends whom I admit this to.  And, of course, my fellow arthritic chicks.  (And arthritic guys? )

So this is where I am.  It’s not a good place.  Where does it leave me?  With some tough choices.  I’ve raved on a little much, so I’ll layout my choice in my next post.  Back in a bit…

Rheumatoid Arthritis and work…I am NOT unemployable!

The keyboard (#18/365)I think it’s time I addressed a few of the other impacts of rheumatoid arthritis. I’ve written a little bit of an overview here.   I’ve written a little bit about why I can’t get a real job.  All of that still stands.  But I still am capable of working.  I just have some specific needs.  Part time hours, and those hours need to be flexible.

I know that’s a big ask, but it’s not impossible.  I am skilled.  I am trustworthy. And I have skills that are perfect for telecommuting.  I am a web developer and designer and I also do SEO work and online marketing.  Perfect.  All I need is an internet connection and I can work from anywhere.  In track pants with heat packs strapped to wherever they need to be strapped.  I should be one of the lucky ones that can still work, in spite of severe, long standing disease.

Wrong.

I have applied for several part time roles and casual jobs.  Questions arise, I always feel compelled to disclose my Rheumatoid Arthritis.  Legally, I don’t have to, because an employer is not allowed to discriminate on that basis.  However, what is the point in winning a job, only to be sacked down the line when RA rears its ugly head?  Pointless.

So no luck.

There are disability employment services here in Australia. Their sole purpose is to help people with disabilities get into paid employment, rather than rely on a  disability support pension.

I have been on their books for over a year.  A few months ago they found me a volunteer placement with the local council.  The plan was for me to work for a few weeks, for no pay, to demonstrate my skills, in the hope that they would then employ me on a permanent part time basic.  (You know, for money!)

The employer was keen, and very positive that if I passed the eight weeks successfully that there would be a role for me.  I had high hopes.

But you know what happened. Just what everyone told me would happen.  I did my eight weeks, and then I was given a lovely bunch of flowers, and a morning tea and that was the end of that.  I do however have a good reference.  But that’s all.

No job.

The whole experience was exhausting, and beyond depressing.  And tried my positive attitude to the core.

They were very good people, friendly and I did enjoy being back in the ‘real’ world.

But.

It was physically hard going in to the office some days.  It was hard being in a lot of pain, and knowing that no one there understood this simple fact.  It was hard listening to people complain that their weekend was ‘boring’ when I had spent mine confined to the couch due to pain and fatigue. It was hard listening to people complain about a headache, and then knock off and go home.  It was hard listening to people just talk about ‘real life’ in a way that has been entirely lost to me.  I don’t live in that world anymore. I don’t belong there anymore.

It was nice to visit.  But I was visiting. I was pretending.  I am not like these people anymore.  No matter how much I might wish it to be true.

Part of this is definitely my problem, and something I need to work on.  But it did bring home to me, that no matter how much you might not want Rheumatoid Arthritis to be your identity, when your disease is severe, there is no way to avoid that.  No way at all.

And ultimately, I left feeling disappointed, and used.  I will not work for free anymore.  Not for strangers.  The only free work I will do will be to raise awareness for Rheumatoid Arthritis.

I had an appointment with my consultant this week.  My old consultant has retired, and quite frankly she didn’t do much for me.  So I was very keen to meet my new one.  And see what she might be able to do for me.

She opened my file.

She asked “Why are you here?”

I said I wished to find paid employment, wasn’t that the point?

She told me that I didn’t need to. I was on disability so there is no requirement for me to job seek.  I explained again that I would like to find some paid work. To improve my financial circumstances.  To develop some self esteem.  To make social connections and feel more ‘normal’.

She shrugged.  “We don’t get many people here on a voluntary basis.”

Then she told me she felt I was unemployable and that I should start my own business.  I explained I didn’t have the financial resources to do that…starting a business takes money.

She couldn’t care less.  She stamped my file that I had attended my meeting and told me to come back in a fortnight.  So that she can tick me off again as having attended.  She considers that her job done.

There will be no help there.  Unbelievable attitude.

So I guess I’ll have to start my own business.  I won’t give up. I won’t settle. I won’t accept that sitting on my couch is all I am capable of.

I am more than my disease.

Rheumatoid Arthritis and ‘you must want to be sick’

yes-autoimmuneHow often do people tell you, either directly or indirectly, that your disease is your own fault?

It’s one step down from “it’s all in your head” but it’s definitely on the same track.

How often has someone told you that your arthritis is the result of bad lifestyle choices?  Seems to me to be similar to type 1 diabetes, and type 2 diabetes.

Type 1 is an autoimmune disease.  Children can get it.  The cause is uncertain.  The disease can be managed, but there is no cure.

Type 2 is a largely a ‘lifestyle’ disease.  It can often be controlled with dietary changes and exercise.

It is essentially a completely different disease, but people with Type 1 diabetes are often blamed for their disease, and told if they would just exercise more, or change their diet, all their problems would be resolved.

Does any of this sound familiar?

It’s a bit like the osteoarthritis vs inflammatory arthritis situation.

Now, osteoarthritis is painful.  Absolutely!

But its not a *systemic* disease.  Osteoarthritis does not affect the heart, lungs, liver, kidneys, eyes…so many other organ systems.  And you don’t take heavy duty medications for osteoarthritis.  People do not die from complications of osteoarthritis. Their marriages don’t end over it.  Their careers aren’t typically destroyed because of it.  It is NOT a life-altering, life-limiting disease.

But when you say ‘arthritis’ this, osteoarthritis is what most people think of.  And instantly start giving you helpful advice.

About diet.   About exercise.  About supplements.

Of course some of these will help some people some of the time.  But the general consensus out there in healthy-land is that *all* you need to do is to is exercise more, eat better food and take some fish oil and you’ll be just fine.  And if you don’t do that, you obviously WANT to be sick. You are CHOOSING to be sick.

Its. All. Your. Own. Fault.

I also want to make it clear that there’s a big difference between effective treatments, and causation.  Changing your diet may help your RA.  It helps lots of people.  It’s worth a try.

That does NOT mean that a bad diet CAUSED your RA.

Exercising may help your RA.  It helps a lot of people. It’s worth a try.

That does NOT mean that a lack of exercise CAUSED your RA.

Taking supplement or vitamin whatever may help your RA…you get the picture.

I could even say methotrexate may help your RA.  It helps a lot of people.  Its worth a try.

But none of us think that a lack of methotrexate caused our RA!

Effective treatment does NOT equal causation.

I tend to try anything that has a bit of evidence behind it.  That’s me.  But one of the problems with inflammatory arthritis is that it’s a heterogenous disease.  Which basically means differing causes, and differing levels of severity for different people.

Put simply, there is mild RA and severe RA and everything in between.  What works for one, does not work for another.  One size does NOT fit all.

And what caused my Rheumatoid Arthritis is, as far as the best science can tell us, a combination of my genetics and my environment.  And possibly an emotional trigger (RA often manifests after an emotional upheaval).

Was it my fault? No.  Definately not.

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.