The truth about living with Rheumatoid Arthritis

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Chronic Christmas : Surviving the Holidays with a Chronic Illness’ by Lene Andersen Review

Lene Andersen describes her new book ‘Chronic Christmas : Surviving the Holidays with a Chronic Illness’ as “an Advent calendar full of self-care tips to help people with chronic illness savour the holiday season as never before” and that’s exactly what it is.  I love it when my expectations are met, and exceeded!

As you might expect, the book takes the format of an Advent Calendar, with each day offering up a tip or some advice for the Christmas Season.  What makes the book special is that it offers ideas for not only the person who is managing their chronic illness, but also the people around them. Their family and friends are given specific ideas on how to make the Christmas season less stressful for the chronically ill.

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Rheumatoid Arthritis and weeds and it’s all in the way you look at it

I had a good day yesterday. These days a good day means I have three or four hours where I’m able to get up and move and do a few things.  In fact, it’s not a good ‘day’ as such…it’s more a few good hours.

Normal is what you get used to.  And that used to be my normal.  I want it to be my ‘normal’ again.

But today is substantially worse.

I DID however manage some weeding.  Only an hour.

My garden is a disaster. The first photo is what I achieved. Looks pretty good. Very satisfying. I hate weeding, and gardening, but I DO like that it’s an instant gratification thing.  You can immediately see the fruits of your labour.  That part I like.

So this part looks pretty good now.

weeding

Then I take a wider shot to see how much more NEEDS doing.  I have done maybe 1/8th of the garden bed.  So, about seven MORE hours to go.

That’s a depressing thought.

2015-10 garden weeding2

But, I don’t have to think about what I have left to do. I can think about what I got done.  I cleaned up that small area.  And that small area looks heaps better.  That small area makes me feel good. So that’s what I’m focussing on.

That’s pretty much a metaphor for how I live my life.

It’s not that I’m in denial. I just choose to be grateful for what I can do, rather than focus on what I can’t.

Other people might think I’m nuts. Or that I have very low expectations. But other people don’t have to deal with the pain and fatigue and other challenges my life presents.

I’m the only one who knows that.  And, considering all of that, I’m doing really well.

Or that’s the way I choose to look at it.

Five things I’ve learned #RABlog

RABlogbadgeI’ve learned a lot of things, thanks to my favourite teacher, Rheumatoid Arthritis.  Things about myself, and things about other people.  About life.  About priorities.  About finding meaning and letting things go that do not mean anything.  Cutting it down to five things is difficult.  I’m scrambling to write down what the really important lessons have been.   I can’t decide what has been the most important, but here’s a few, in no particular order.

I can keep going through more pain than I ever thought possible.  Everyone can.

Pain is now a non-negotiable.  It’s a part of my life now, and most likely always will be. Some days it will pick me up and throw me down and there will be nothing I can do about it. Other days I will be able to work through it, or work with it.

The thing is, I will always be in pain. But how much I suffer with that pain is up to me.  If I choose to focus on the pain, on the things I can’t do, on the misery it causes, I will suffer more.

If I accept my limits.  If I make the most of the better days.  If I focus on the small achievements.  If I remember that I am better off than so many other people. If I am grateful for the life I have, my family, my friends, that I have a roof over my head and food on the table…I will suffer less.

Pain is inevitable.  Suffering is optional.  I used to really hate that saying. I thought some idiot made that up.  Because the fact is that there is an inherent amount of suffering involved in being in constant pain. There is a degree of suffering that just comes along with that deal.  Pain hurts.  Hurting is not fun.

But what it means is we can minimize our suffering, or maximise it, by the way we think.  By the way we respond to that pain.  By not letting it be the centre of our world, always. By having a vent and a complain sometimes, sure, but by not making a lifestyle out of complaining.  By remembering that all life is precious, and damage is not death.

I have learned to appreciate the little things.  My kids laughing.  The warm sunlight on my face.  The bliss of soaking in a hot bath.  The smell of clean sheets.  Good coffee.  A glass of wine at the end of the day.  Talking with friends – really talking – about stuff that matters.  So bored of small talk. Hugs.  The sound of rain.  Birds singing. My dog’s slobbery kisses.  My cats’ purring.

So many little things every single day that make me happy.  So many little things I never really noticed or focussed on before I got sick.  I was far too busy.  There was too much work to do.  There are definitely ways that RA has improved my life.  I just wish that I’d been smart enough to work them out WITHOUT becoming chronically ill.

Rheumatoid Arthritis is incredibly varied. I have met people who have one joint flare once a month or so. And some people who are completely crippled by the disease. And everything in between.  And that the world at large does not understand this, but even within the RA community there is a lot of misunderstanding about this.

There really isn’t a ‘typical’ RA. But it does tend to follow a few main courses.  Wherever you fall on the spectrum, RA will certainly cramp your style.  But it may be anything from an inconvenient pain that you know will be gone tomorrow.  To a whole body disease that attacks your heart, lungs, kidneys, liver, eyes…almost any internal organ.  RA is not one disease. It is many. Some are mild, some are severe.  Each person has their own story. And each is important.

Doctors are not gods.  They are just people, doing a job to the best of their ability.  They are flawed and they make mistakes.

For me the sign of a good doctor is one who’s prepared to listen, and work through options and ideas with me. I’m a very informed patient, at least when it comes to autoimmune arthritis.  My doctor knows a whole lot more about medicine than I do, but I know a lot about a very narrow subject.  The best outcome for me is when we work together as partners, with mutual respect.  He or she has the theoretical knowledge and access to studies and statistics and a wealth of experience with many patients. But I have lived experience.  I know how it feels to live with RA.  I am the only one who knows what my RA feels like (see the point about – RA varies)  and he/she needs to listen to me, just as I need to listen to him/her.  We both have our part to play.  His/her experience will guide me to the treatments most likely to be effective for me, and it’s my job to take the medication.  Deal with the side effects. Not give up too quickly on a therapy.  And be honest at all times.

I have nothing to feel guilty for or ashamed of.

As long as I am doing my best every single day, that’s good enough.  My worth is not based on the money I earn.  Or the size of my house. Or the newness of my car.  While at times I wish I could do better for my children, provide a better life, give them more, doesn’t every parent feel like that sometimes?

Rheumatoid arthritis has made me a kinder, more compassionate person.  It has also made me a tougher, more independent person.  I’m far less judgmental than most.   I spend a lot of time trying to help other people, but in truth I always did that.  I’m a good listener, and if there’s one thing that society is sorely lacking, it’s people prepared to listen to other people’s problems.  And care.

I have value.

Once upon a time I was a driven career woman.  A computer professional, at the top of my game.  I was earning big money, three times the average wage at one point.  I wasn’t even sure I wanted children, it was all about career.

Things changed.  And that’s OK.

That’s five, but there’s one more. When I’m out of steam, I’m out of steam. It’s not negotiable. Goodnight 🙂

Explain your RA #RA Blog

RABlogbadgeToday’s blog prompt is how I explain my RA to others.  When I meet new people, or even when friends whom I’ve known for ages suddenly ask what it’s like.

RA is like a box of chocolates – you never know what you’re going to get. But instead of the potential being caramel, or nuts or strawberry cream, your options are far less fun.  Pain, fatigue, organ damage, disability, isolation, depression.

In fact, instead of never knowing what you’re going to get, the question is more like what you’re going to lose.  Lovers, friends, family, career, your financial future.  Your hopes and dreams.  The person you once were.

In the beginning I found it hard to explain RA.  I have my elevator pitch now :

‘RA is an autoimmune disease, unlike osteoarthritis, which is more common, less serious and caused by wear and tear and general aging.  RA is a systemic disease and it’s about more than joint destruction and pain. It can attack your internal organs, including your heart, lungs kidneys.  It can also affect your eyes.

It’s a treatable disease, but there is no cure. And a large minority of people don’t respond to any of the current treatments, and live in constant pain and do become disabled, so more research and awareness is needed.’

I usually get to somewhere around ‘osteoarthritis’ before I notice that people’s eyes have glazed over and they aren’t listening. Or they interrupt or change the subject.

Now I just say RA is like being hit by a bus every day.  You’re not sure if it’s going to run right over the top of you and leave you with every bone in your body broken, of if you might just get a glancing blow today, and maybe only have broken hands and feet.  Or hips. Or knees.  It can affect any or all of your joints at once.  And it can damage your internal organs too…like being hit by a bus.

Of course people think I’m exaggerating.  I’m not.  Most days I get run over by the bus.  I get knocked completely flat, with most of my joints inflamed and painful.

I take a range of medications to try and manage my disease.

Disease Modifying Antirheumatic Drugs (DMARDs) work on the disease process itself.  On modifying the disease, and hopefully getting it into remission.  There are range of DMARDs and Biological DMARDs, but not all of the work for everyone. It’s impossible to predict who will respond to which medication.  And some people respond to none.

Corticosteroids are powerful anti-inflammatory medications.  But the side effects from long term use are so devastating that they should only be used short term.  Some of us, however, have no choice but to take them long term, or live with unendurable pain levels.  They are usually prescribed as a ‘bridging’ medication, because DMARDs can take several months to work.  Prednisone is a corticosteroid commonly prescribed to provide symptom relief until the DMARDs have a chance to work.

Non-Steroidal Anti-inflammatories (NSAIDs) reduce inflammation, and provide pain relief.

And narcotic pain medications.  In severe Rheumatoid Arthritis, the pain is such that narcotics are required.  Nothing else will touch this level of pain. And narcotics just take the edge off.  I take them daily, and have done for many years.

It’s also pretty common for people to jump in with ‘I have a friend/Aunt/boyfriend’s best friend’s Step-mother who has RA’

I tell them that every person with RA is different. That the disease varies widely in severity and how it impacts a person. Which joints it attacks. How many joints are affected.  Whether the disease is systemic, with organ involvement.  All of these things have a huge impact on how RA affects their lives, and their capabilities.   No two people will be exactly the same, nor follow the same disease course.

So while I’m glad their friend can run marathons and climb mountains and work an 80 hour week, I can’t.  I’ll cheer their friend on with gusto though!

The stats say that most people who have RA have mild RA (70%), and respond well to treatment.

I’m not one of those people.  I’m at the more severe end of the spectrum, and I have not responded well to any of the eight disease modifying medications I have tried thus far.  And these are serious medications, that come with a range of potential side effects.  The most severe of all being death.  As side effects go, death is pretty big one.

Of course that’s very rare.  But it’s real.  And while I don’t focus on the risks, I have to be aware of them.  And take sensible precautions.

Trying to keep my disease under control involves suppressing my immune system.  That means I am more susceptible to getting sick.  I have to avoid sick people, because not only do I pick up bugs and viruses more easily, my body can’t fight them off as well either, and I take longer to recover.

The number one thing I try to explain is that most of the time RA is completely invisible. Sometimes there might be some redness or visible swelling in joints. Sometimes there are visible deformities.  But most often there is nothing to be seen.

That does not mean that there is no pain, or no disease wreaking havoc.  It means when someone admits that they are in pain, please believe them.  Most often it’s extremely hard for us to admit that we’re hurting badly.  Or that we need help.

Just believe them.  Ask questions. Listen to the answers.

Don’t tell them about your friend Sarah who had that but she is all better now because she tried xyz…  That’s great for Sarah, but believe me, every person with RA wants to get better, and has probably tried everything and more.  It’s a frustrating disease for rheumatologists to treat, because the response to medications is so individual, and so unpredictable.

And sometimes there’s just nothing to be done.  Sometimes nothing will halt the pain and fatigue and destruction of joints.  The organ damage, and failure.  And sometimes people die from RA.

It is very rare. But it happens.  Most of us don’t focus on it.  We don’t think about it.  We don’t let RA become our whole world.

Because we’re too busy living our lives, the best we can.

Nothing is simple when you have Rheumatoid Arthritis and you need surgery – Laparoscopic Gallbladder Removal (Cholecystectomy)

ecgOk, here we go again. I knew I shouldn’t have checked the mail.  It’s a letter (no, really??? Colour you shocked!)

The letter says I need to get an electrocardiogram (ECG) before my surgery.

What’s with everyone being all upset about my heart all of a sudden?  Sure, I’ve been complaining of chest pain for years now.  I’m quite used to everyone ignoring it, or muttering ‘costochondritis’ under their breath if anything at all. (By the way I know it’s not costochondritis. I know what costochondritis feels like. This isn’t it.)

Close followers of my facebook page will understand that my heart has been quite stomped on over the last few years, and most definitely broken by the most beautiful, kind man that ever walked the earth.  He didn’t mean it.  Actually, I don’t think he noticed.  This isn’t THAT either.

So now I need to go running around to get an ECG.  I think you all may have noticed that I am not feeling very well lately. I think you may also have noticed that I have been doing rather a lot of running around to medical appointments, scans, bloodwork…all because of this gall bladder surgery and a few areas on my MRI that lit up bright white.

Bright white on a brain MRI is not good, I’ve since found out.  Or it might not be good.  Cos if there’s one thing they definitely know for sure, it’s that they definitely don’t know exactly WHAT the bright white stuff is. But in layman’s terms, it’s areas of dead brain.  Tiny areas, but they are there. Whether that’s from mini strokes or the start of Multiple Sclerosis (MS) they just don’t know.  So we’ll just stick with ‘bright white spots are not good’ cos I’m getting off track here.

My new neurosurgeon, who saw me on such short notice (six hours! That’s quicker than the ER!!!) didn’t feel the need to talk to me much. I’m just the patient.  Why converse with me?  His role is to talk at me.  My role is to listen and obey.  He told me he was worried about strokes, and possible MS.  But he told me NOT to worry.   Because maybe it’s nothing at all.  (Strange, forced grin. Oh yeah, he’s a people person.)

Well, of course not. Why would I worry? That’s what I pay him for.

So I get that he wants blood thinners and a carotid artery ultrasound – that makes sense for strokes.  But he also wants a holter monitor. To check out my heart.

Now my gall bladder surgeon is getting all interested in my heart too.  It’s not usual practice to need an ECG before you get your gall bladder evicted.  It also just adds to the running around I have to do.  We all remember that I have severe rheumatoid arthritis, don’t we?  We all remember that getting around is kinda difficult for me, don’t we?  *sigh*

So what aren’t they telling me? What have I missed in my lab work?  Why are they all suddenly going ‘SHhhhhh…here she comes!  Don’t talk about her heart!!!’

Google tells me that when a patient is having non-cardiac, low risk surgery, surgeons only request an ECG when a patient is intermediate to high risk.  I was told Laparoscopic Cholecystectomy (rip out your gallbladder), is low risk.  So if my logic skills are still intact, and I didn’t just stroke out and am in fact now living in the Matrix, they figure I’m an intermediate to high risk.

I wonder how they figure?

I sure didn’t need an ECG before my shoulder surgery.  A much bigger, more complicated surgery!

And if I’m not low risk, well, they might have mentioned that!  I’m a big girl. I’ve got brain lesions. I can take it.

Honestly?  I’m not really concerned. I’m just cranky cos I actually promised myself I was going to do NOTHING tomorrow. I’m tired. I’ve been doing lots of medical…stuff.  When what I really need to do is rest.  And not vomit and all.

Now instead I’m going to have to go get an ECG.  Good times!