The truth about living with Rheumatoid Arthritis

#rheumatoid arthritis

Rheumatoid Arthritis, Mixed Connective Tissue Disease and good advice

Advice…good advice.  Unsolicited, well intentioned, good advice.  When you’re chronically ill, you get a lot of good advice.  Most people mean well, and want to help. But sometimes people just cannot accept that some diseases are, in fact, incurable.  And sometimes people get sick, even if they’ve done everything ‘right’.

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Rheumatoid Arthritis and the trolls and the bullies

Before I shut this down, I have to say something about bullying.

Bullying is rife in the RA community.  I’ve seen it done to others.  I’ve had it done to me.  And it hurts.  And as long as I live I will never understand why a person, or group of persons, would possibly find pleasure in hurting someone else.

Some people like to ‘take you down a notch’ because you’ve become too big for your boots.

In their opinion, anyway.

Some people take joy in seeing someone else cry.  Or seeing despair in their posts online. Or watching them sink into depression, and then kicking them when they are down.

There are people like that.  And the kicker is, there are a few ‘advocates’ who preach love and kindness and compassion for all, and blog about it. BUT if they don’t like something I’ve written, no compassion for me. Loose the hounds!

Some people aren’t concerned by trolls.  Good for them.  I admire that. It’s strong.

Doesn’t change the fact that the trolls and bullies are cruel, evil people.  And they do upset me.  I have been very hurt by what some of my so-called online friends have done to me.  One went in for the kill.  And then when I reached out to another, I sent a message saying ‘I need help. Please.’, that person didn’t respond for 24 hours (to my crisis message).

I never send messages like that.  I had never sent a message to this person like that.  I don’t have many people I can go to for help.  It was a poor choice, obviously.  But I was desperate.  If you get a message like that from me, you know I’m in real trouble.  They knew this.

And then they unleashed their own attack.

I thought it was sadistic opportunism.  But it wasn’t.  This person had been angry at me for weeks over something I had posted, but they didn’t talk to me about it.  They thought it was about them. It wasn’t.

Here’s a tip.  Not everything is about YOU.  The unbelievable arrogance.  Then this person admitted that they had waited, been waiting, for weeks, for me to hit one of my down patches.  An opportunity. And then they struck.

Totally premeditated.  For maximum impact. Congratulations.  Most horrible person I have ever ‘met’.

And now blocked.

But damage done.  A mature adult would have just asked me about the post, and talked to me about it.  Nope.  Lie in wait and ambush me when I’m already hurting.  I really hope it was satisfying.

I don’t care how much pain you are in, or have been in, or what you’re teenage trauma is.  It is never Ok to take it out on someone else.  Never.  There is no excuse.

And if you slip because you’re only human, and make a mistake, the word is ‘sorry’.  It goes a long way.

But I digress.  The bullies.  The trolls.  Listen up:

The thing is, when you choose to attack someone, you don’t know where they are in their life.  You don’t know how bad their pain has been lately. You don’t know the degree of their disease.  Maybe they have liver damage, or their kidneys are failing.  Maybe they are losing their vision. Maybe they’ve just had another scary diagnosis. Maybe they’re about to have surgery, or a procedure. Maybe they’re scared.  Maybe they have no one to even take them to the hospital.  Or visit them. Or pick them up.  Maybe they’ve just had surgery.  Maybe it’s their third hospitalisation in 4 months.  Or maybe they have a post op infection, and can’t take their meds.  So they are at a constant 8+ on the pain scale, and really, really sick.  Maybe their husband just left them, or they’ve just found out he’s cheating, or maybe they just lost their best friend.  Maybe they don’t have any friends.  Maybe they are just surrounded by people who can’t see them.  Or maybe their kid is sick, or just been diagnosed with something terrible.  Or expelled from school, or violent to them.  Maybe they have problems with their extended family. Maybe they don’t have any extended family.  Maybe they don’t have anyone.  No one at all.  Maybe they can’t pay the bills.  Maybe their ex has stopped paying child support and now they’re in deep financial shit.  Because they are too sick to work.  Because they are too sick to stand up. Because they get infection after infection and can’t recover.  Maybe they’re going to lose their house.  You don’t know what challenges they are facing.  Life, bills, kids…and maybe they have NO ONE to lean on.

No one.

And you don’t know how close they are to the edge. 

And then YOU, the troll, comes along and decides to take out whatever childhood issues you have on them.  Because you being affronted over a blog post is so much more important than any of that other stuff.

So let me be really clear.

Don’t bully.  Don’t troll.

You see something you don’t like on a page or a group?  Keep scrolling.  You don’t like a blog post, or a facebook post, feel free to comment politely.  You have a right to your opinion.  You have a right to share it.  It can be done with civility.  Without hurting anyone.

If you think someone is a crap advocate.  If you think they are a lousy writer.  If you think someone is a terrible example for what it is to be sick.  If you think someone is not as sick as you, and therefore shouldn’t be in the position they are in.  If you think they are far too healthy to be that positive, to manage as well as they do…maybe they are just stronger than you, dear troll.

And if you’re offended…

Unlike the page.  Unjoin the group.

Just go.  Quietly.

Because you’re responsible for your actions.  And you’re responsible if you’re the last straw that pushes someone over the edge.

And if you are a troll, and you’ve already done this stuff to people.  Go get some help.  Figure out why you take pleasure in hurting others.  Cos that’s some serious problem you have there.

Just go.

Have some respect.  Some decency. And practice what you preach.  Or shut the fuck up.

Dear diary…another day on the couch with rheumatoid arthritis

Today I had a slow start, but I thought things were better.

I didn’t hit the shower until 10am. I didn’t get in the car until 1pm.  The rest of the time I was on the couch.

I drove out to pick up my daughter’s friend and brought her back to our house for a sleepover.  25 minute drive.  On the way back I stopped at the grocery store, and picked up about 20 items.  Mostly stuff for dinner, and some junk food for them while they watch movies all night.

Long before I hit the checkout the pain hit hard.  It was interesting watching my daughter’s friend watch me.  I haven’t met her before. She seems a like a really good kid.  Nice girl. Polite, kind and smart.  She helped me load the car, and she was respectful.  She understood that I would not be taking them to the swimming pool.  She didn’t complain.

I loved that I didn’t have to ask her to help me load the groceries from the trolley to the car, and the car to the house. She just did it.  I’m not sure my kids would do that. I hope they would.

And then I crashed.  Back to the couch.

I hate the couch now. Hate it.

I didn’t do much today.  A normal person wouldn’t even consider it doing anything.

I should say that a friend txted me and offered to get some groceries for me.  Beautiful lady.  I bet if I’d asked her to get 20 things, she would have.  But I really wanted to get them myself. I really thought I could.  And she went to the store for me last week.  I don’t want to wear out my welcome.

But now I am back in full body mega flare.  I’m not sure people even know what that means. I saw someone on fb (not on my page, but a friend) saying they were in full body mega flare cos both their shoulders were hurting.  At the same time. Seriously.  I don’t think she knows what a full body mega flare is.

But you can’t control how people use your words.  Words take on a life of their own.  And people can so easily change their meaning by adopting them and making them their own.  It’s both the beauty and the beast in writing.

Just for the record this post describes a full body mega flare.  I wrote it almost five years ago. That’s a long time to be going through these things.

So I spent the afternoon on the couch.  A friend txted me and asked if I was up for a drink. I said great, I’d really love a glass of red and I have some in the cupboard, but I can’t leave the house.

She said she couldn’t come to me. She said she always comes to me lately.  Which is pretty much true.  But let’s be honest, she only comes when she has a reason. A need.

I apologised.  I can’t drive myself anywhere. She only lives about 1km away. Literally.  I can’t walk that far. I can’t walk to my kitchen, let alone hers.

I can’t use sticks, because my wrists, elbows and shoulders can’t bear my weight any better than my hips, knees, and ankles can.

Useless.

I can’t get there to have a glass of wine, though some company and a laugh is pretty much exactly what I need.  If you’re sensing some depression, perhaps you’re right.  Though it’s probably more the ‘thud’ of a reality check hitting me in the guts.

She won’t come to me. She is making a point. As many people have done before her. I do get that its tedious always having to come to me.  But there are times when I wish I had the ability to allow people to feel what I am feeling.  Just for a few moments.

I know it would change their lives.  I know it would change the way they treat me.

She is making a point. Fine. But the real point is, the fact that she feels she needs to make a point tells me that she has no understanding for how sick I am right now.  She called me ‘lucky’ last week. I have to write about that too. Because that burned. It really did.

I need help, but there is none.  I am struggling to keep my head above water.  I am not dying, but I am not living either.  I miss the gym.  I miss being able to walk to the bathroom.

The horrible sick thing has moved on. But it has left vicious, untethered RA in its place.  At first it felt better. Comforting, even.  I know this. I am used to this.  I just have to ride it out.

But it’s not going away.  And if I push too hard, the headache, the dizzy, the nausea, the exhaustion, the fever, all come roaring back.

But I hate the couch.  I just can’t lie here anymore.

But I can’t get up either.

And there’s one more thing.  I hardly dare to acknowledge it.  It’s a tiny, but intense ball of anxiety.  My mind flits there and I quickly force it away. But the thought is there. It has been planted.  I am aware.  The most terrifying thought, that I’m willing to bet that everyone who suffers severe RA thinks sometimes.

What if this flare doesn’t end?

Rheumatoid arthritis and glaucoma, cataracts and sjogren’s syndrome – update

My nine monthly eye check came around this morning.  Only its been nearly 12 months, because I’ve already postponed it twice.  Flares and stuff. You know how it is.

Today I didn’t feel great. I had to get my mother to drive me.  Because every 44 year old loves to call Mummy to be driven to their doctor’s appointment.  It’s just one of the many joys of being chronically ill.

Still, I’m lucky I have a mother and that she cares enough to drive me.  Without her I would have had to cancel again.  So, stupid pride aside,  I’m all good.

The reason I need eye checks is because I have Sjorgen’s Syndrome.  It manifests as dry eyes.  Sjogren’s is about much more than dry eyes, but today was about eyes.  And mine are dry. Very dry.

I use eye drops with vitamin A several times a day. I also use a thick gel every night. Well…every night that I remember. Sometimes I forget for a while, and then my eyes remind me that I need to NOT forget.

When my eyes get dry, my eyelids get inflamed.  It’s called blepharitis, and though it’s not at all serious, it is uncomfortable.

More serious is glaucoma.  Long term use of prednisone increases your risk of glaucoma significantly. Elevated eye pressure, or intraocular pressure (IOP), is a risk factor for glaucoma.  My eye pressures have been high, but there is no damage to my optic nerve.  Originally my eye pressures were 10 in each eye.  Which is the low end of normal.  Its fabulous.  Then I started taking prednisone.  At my last test, my right eye was at 20 and my left was at 16.  That was a concern.  Today both eyes were 15, so the pressures have levelled off, and are smack in the middle of the normal range.

Most importantly, my optic nerve is ‘pristine’ to quote my ophthalmologist. She is very happy that I have tapered down to 10mg.  She agrees that 7.5mg would be even better.  And 5mg would be break out the French champagne kinda stuff.  But she understands what a big deal me getting down to 10mg of prednisolone is.

The other thing that prednisone causes is cataracts.  I have slow growing cataracts.  Again, they have grown some.  However I passed all my eye tests brilliantly.  My right eye is not as good as my left.  I still have trouble keeping it in focus sometimes.  It could be the inflammation. It could be the Sjogren’s (most likely).  It could be the cataracts.  And it still could be neurological.  But with the way my optic nerve looks, that’s less likely, which pleases me no end.

So my vision is still excellent.  My colour vision is excellent.  My ophthalmologist (I just keep typing that word to prove I know how to spell it now.  You try.  It’s hard!) is very surprised that my cataracts are not impacting on my vision yet. From what she can see, they should be.

So again, I’m grateful.

She asked if I have trouble with night vision.

Yes!!! I would have forgotten to mention it.  But I do get dazzled at night.  Particularly twilight.  I really can’t see.  When I’m in the car, I can’t judge distance, the lights are bright and blind me, and I am not safe to drive. So I don’t.

That’s a pretty huge inconvenience.  No driving at night.  That really kills my non-existent social life!

Oh and the last reason for the eye check is that I’m still on Plaquenil. I’ve been on it for about ten years now.  It’s the mildest of all Rheumatoid Arthritis drugs, but it can damage the retina.  Sometimes this damage is irreversible, so anyone taking plaquenil should have their eyes checked regularly.  Some doctors say every six months.  Some say every year.  Some say every two years.  Eye damage is very rare, however.

My retinas are fine.

So, once again, the news is good.  Those cataracts will need attention…but I’ve got too much going on right now to worry about ‘one day’.  And there is nothing I can do about it, except taper off prednisone.  And I’m doing that anyway.

So. Two important things, right there. Forget the medical stuff…remember this:

  1. Don’t worry about things you can’t change, and
     
  2. Live in the now. Don’t worry about things that might never happen.

 
Words to live by.

 

 

Rheumatoid Arthritis and a road trip to Sydney

Ok, I’m excited. And I am checking reality at the door.  For now…

This weekend I am taking my ‘little’ girl to Sydney (Australia) for a girl weekend of fun!  My son is staying with his Dad.  And while I feel horrifically guilty at leaving my boy behind, I know he is:

  1. Safe.
  2. Much happier at home.
  3. Looking forward to a ‘’Heroes” (the TV show) marathon with his Dad. Right now, after some difficult times, they are getting on great, and enjoying a common love of a TV show.

So really, it’s as if the stars have aligned, and I booked two nights in Darling Harbour with my daughter.  To spend some ‘quality time’.  To spend some time with her doing things that we have never been able to do because of my son, her brother’s, Asperger’s Syndrome.

I love my son. He is an incredible kid. He has amazing talents.  He is intelligent, and he’s clever. He’s savvy.  And he’s funny. And he’s kind, and caring and shows more empathy for others than most ‘normal’ people.  He has an understanding of life that stops people in their tracks at times.  A razor sharp ‘cut-to-the-chase’ honesty that he is willing and able to express.  But never with nastiness or mean-ness.  He has no guile.

He doesn’t have a nasty bone in his body. He is never manipulative, he is never devious.  What you see is what you get. In so many ways, he is one of the very best people I know.

But.

He is on the Autism Spectrum.  Because he has Asperger’s Syndrome, there are a whole bunch of things he can’t do. He can’t stand changes to his routine.  He needs familiar things around him all the time.  He is terrified of heights, loud noises, strong smells.  He is so terrified of sharks that he can’t go near the ocean or on the water.   He has no interest in new situations, new places, new foods.  He likes to stay at home, where he is comfortable and happy.

Holidays are hard. They are really hard.  My daughter has missed out on a lot of things that most kids…most people…take for granted.

So I am taking her to Sydney.  To experience new things.

Darling harbour to be precise.  Where there are lots of fun things to do.  Things we have never done.  Simple things that normal families do. Things that we can’t do for two reasons. Because of my son’s disability and because of my own.

I’m going anyway.

We’re driving up in the morning and should get there around 1pm or 2pm.  Then we’re going to walk over to Darling harbour and go to the Sydney Sealife Aquarium  (http://www.sydneyaquarium.com.au/ ).  This is my daughter’s number one attraction, so we’re doing it first.  So if all else fails, we did this.

Then we’ll walk back to the hotel, rest,  (I should put that in capitals) and head for China town.  (Five minutes walk from the hotel).  The Chinatown night markets happen every Friday night, and I chose this particular hotel so we could walk down, grab dinner and browse.  If it were far, we wouldn’t go.  My daughter is quite fascinated with Asian culture, admittedly mostly Japanese, but she is excited about China Town, and she loves markets.  Should be a win-win.  We’ll get dinner there, from one of the many street food stalls, then go back to the hotel.

And watch movies!  My daughter thinks we might swim.  Maybe, but doubtful. But the hotel has a fantastic pool ( my daughter loves to swim and play in the water, so this was one of her/my major criteria) and a spa pool attached. I can defreeze in the spa pool while she swims. Maybe…

(My son would not be able to manage the potential crowds and smells of the night market.  He would not eat the Asian food.  He would likely melt down in that environment and force us to leave.  he would refuse the pool, and I would have to stay with him in the room AND supervise my daughter in the pool. Clearly impossible, so she would miss out.)

Saturday we will catch the ferry across to Taronga zoo.  There is a cable car we can ride to the top of the zoo and work our way down.  I’ll have to walk, but it will be downhill, there are plenty of benches along the way, and because I’m not driving I can take as much oxycodone as is required.  I’m lucky in that oxycodone is effective for me.

(My son would never catch a ferry. He would be terrified.  He doesn’t get on any kind of sea vessel.  He hates zoos.  The smells are too strong, and again, too many people.  He can’t handle crowds.  He would be terrified of the cable car, and would not be able to do it.  And therefore I wouldn’t be able to do it. I wouldn’t be able to make the walk up.)

We’ll spend the day at the zoo.  My daughter loves animals. So do I. I hope to take a few hundred photos.

Then the ferry back to Darling harbour.  Then a ten minute walk back to the hotel.  This part worries me.  I’m likely to struggle. Worst case, I get a taxi.

We’ll collapse in our room for a while.  If we (I) have the energy, we’ll swim again.  Then we’ll order room service and watch another movie. Room service was also one of the things my daughter wanted to experience.  So room service it shall be.  Tripadvisor says the hotel has an excellent menu and great service.  I’ll let you know.

I think it’s likely I’ll be in bed by 8pm.  I’ll bring my heated throw, and heat packs. Of course the room has a microwave – it’s another essential.

The last day we will check out at 10am, and head for Madame Tussauds.  Then start heading out of Sydney.  On the way I hope to meet a friend and have lunch.  Then drive home.

(My son would not handle Madame Tussauds, the waxworks are creepy and scary and we would have to  skip most of it.  The house of horrors stuff is too real.  He would have nightmares.  And the celebrity stuff is boring. He has no interest and would therefore complain the whole time. Loudly.  He wouldn’t be able to meet new people, it would be too much to stop for lunch after such an intense weekend.  He would melt down in the cafe.)

The drive home is going to be the hardest part. After a weekend of so much *stuff* I will be wrecked.  I will be a mess.  And I need to drive for 3 hours down the highway to get home.  I’ll need to go easy on the oxycodone and focus everything on the drive.

There will be cans of coke and music and wound down windows.  I will take breaks as I need. If the 3.5 hour drive takes 6 hours, so be it.  There are plenty of rest stops.  And I will use them.  I will be careful and sensible.

But I have to admit, these are the times when I wish I had a partner.  Or a friend. Someone else to literally take the wheel when I can’t.  Someone to help out. Someone else to take charge.  Someone to pick up the slack so that I can collapse and not keep pushing through.

I’ve never been the type to enjoy holidays where you ‘relax’.  I get bored. I like to do stuff. Go places where there is plenty to do.  Not lie around by the pool or whatever.  I only like to do that after I have worn myself out having fun and seeing things.  But that doesn’t really gel with Rheumatoid Arthritis, and my current capabilities.

But I am who I am. I enjoy what I enjoy. And my daughter seems to be a lot like me.  She wants to see things. Do things.  We will do as much as we can, and make the best of it.  This trip is all about her.

But please note!!!  I am in no way complaining about  my son, in my bracketed italics. I am merely explaining why doing such simple things is impossible for us. Or has been. And why it matters that we do them this trip.

He is just not capable. He has no desire to put himself through that kind of stress, and why should he? I understand that, though I wish he could come with us.  I will miss him.  At the same time I am glad that I can do these things with my daughter, and focus on her.

Yes, I could have taken the bus or the train, but the ROADTRIP is part of my daughters dream.  And I’m looking forward to the road trip too!  My daughter and I will have nothing to do but talk, and listen to music and sing along…and talk.

This whole trip is about her.  And it’s fair that it is.

Looking at this list, there is no way I’ll get through all of that.  It’s a lot for a healthy person.  For me, on my own, something will give.  I’m hoping it will give after I get home.

Make no mistake, what I manage this weekend is a testament to how badly I want it.  Not a marker of my disease severity.  We are all capable of super human effort when the cause warrants it.

I want this very badly.  For my daughter. And for me.