Rheumatoid Arthritis and being prepared and its not a toomah


whiteboardThe headache is back!

It’s not as severe, but it’s there. It’s there enough to interfere with my thinking. To make my brain feel like a big pile of sludge that I have to wade through, waist high at least, to try and understand what is happening around me.  The sludge becomes neck high if I actually have to talk to someone or understand what someone is telling me.

I keep finding pencil cases in the freezer and open cans of cat food in the bathroom.  I am doing strange things.  I forget what I’m doing half way and just wander off. I head off purposefully to the next room, only to forget what the hell I’m doing there by the time I arrive.  I’m happy enough I suppose, but I’m a little…confused!

More than little confused.

I used to be able to keep many balls in the air.  I was known for it. Back in my programmer days I was put in charge of all the ‘small’ applications.  About ten of them.  Complicated algorhythms that needed updating and maintaining.  My talent was being able to keep all of that stuff in my head, and know several applications inside and out and REMEMBER the code so well that I could here the problem and know just where to go to fix it.

Back in the day. Back when I was healthy and earned the big bucks.

Now I can’t remember if I fed the dog this morning.  She seems OK…

Anyway, I had to ring my insurance company to find out if I had an excess (co-pay) for the hospital, and how much for my gall bladder removal on Wednesday.  First I needed to ring the surgeon’s rooms for the item numbers. It’s all about the item numbers.

The receptionist spoke so fast. They are five digit numbers. I politely said “I beg your pardon, I didn’t understand that.’

She barked the number at me again.

I asked if I could just repeat that back to her to make sure I had it right.

I had it wrong.  She sighed.

I asked her if it was only the one number.  She sighed even louder and snapped at me that there were TWO item numbers.

I said “I am so sorry but I am not feeling very well. I am sick. I am having surgery in two days. I cannot understand what you are saying could you PLEASE speak slower.”

She started speaking in an exaggerated, sloooooow voice.  As if I were an idiot.

I hate her.  She is truly a horrible person. She was demeaning and nasty.  I didn’t ask for much, except a little understanding.  And some courtesy.  Is it so bad to ask someone to please speak a little slower and clearer?

She was rude. She IS rude.  She should not be doing the work she’s doing. I don’t care what else is happening to her today. It does not excuse her treating me the way she did.

I am dealing with a very disturbing new symptoms.  I could hear the numbers.  But I couldn’t recreate them. I couldn’t write them down.

I could only keep two numbers in my head at a time…three, zero..blurble, farrble,murphle…ine.

So I wrote down three. And zero. And repeated them again. And asked her for the third digit. JUST the third digit.  And so one. And eventually I got both 5 digit item numbers down.  Correctly.  Sarcasm and all (hers).

This is not brain fog.  This is not the cognitive dissonance that goes along with severe pain.  This is something else.

I cannot make my brain focus.

I thought not being able to make my eyes focus sucked.  Losing your brain is worse.

People are talking so fast. I am asking everyone to please speak slower. I can see them looking at me, wondering if I am drunk.

My pain levels are lower than usual. It feels like the prednisone is finally kicking in. The rest of my body is on high speed.  Heart racing, extra energy, lower pain.  The usual prednisone drill.

I am taking less pain medications also.  So that doesn’t explain why my brain has set itself to go-slow.

I don’t know what is going on.  I’m so glad I had a recent brain scan.

I know it’s nod a toomah!

I saw my doctor for scripts this morning. I asked him to speak slowly.  He is concerned about my pain med use.  I thought I was only taking one a day, but the fact that I have run out means I have been taking more.  I have plenty of 10mgs, but I am out of 15mgs.  So I have been taking the higher dose. Perhaps not noticing it. Perhaps not really wanting to.  My doctor is not happy, but he says we’ll talk about  it after my surgery is over.   At other times I have taken far higher daily doses of oxycodone however.  So it’s not that serious.   My doctor is just the caring type and he keeps an eye on me.

I’m aware of the problem(s).  So I have a board. I told my doctor about my board.  He loved the idea of my board.

Big, fat whiteboard.

I list my usual pain meds (oxycontin, oxynorm, Panadol and Valium)  and I write what time I took each drug, and what dosage.

I have told my kids, should I ever get into trouble. Should I be hard to wake up, should I be confused or showing signs of stroke, TAKE A PHOTO OF THIS BOARD.

Call the ambulance first, sure.


So that whoever gets to treat me knows what I have taken.  Can see what drugs are in my system.  Come to think of it I should probably add prednisone to my board.

Best idea I’ve had in ages.  Another RA Life Hack.

Yes. It scares my kids a little. But they are old enough to learn and understand.  Much scarier for them if an emergency situation arose and they didn’t know how to handle it.  How would they live with THAT?  Say I died because they didn’t know the signs of stroke, and then the medics O.D-ed me on pain meds or didn’t know I was steroid dependent.

Don’t laugh. It happens.

A big part of being a chronic patient is knowing what the risks are, and managing them intelligently.

I hate hypochondriacs, I really do.  But this isn’t hypochondria.  This is just a good idea.

Now I’m going to take my next dose, and write it on my board, before I have my next absent brain attack.

Thank god for spellcheck.


  1. This is a weird and very scary feeling. I had something similar several years ago when I’d been switched onto the slow release Voltarol. I was reading support group e-mails as I do every single day, but come evening time this one mail I had to keep reading over and over because it just wouldn’t go in, it wouldn’t compute. I was reading the words but they didn’t make sense. I got up and went and got ready to pop out as we had to drop someone home. I told my husband that I felt odd, odder than my usual odd!! That I didn’t feel like me. I got in the car, we ran the friend home and came back and I still didn’t feel right. I told my hubby that I felt like I was outside of my body, things wouldn’t compute in my brain and I was scared. He rang the emergency health care line and spoke to someone on there, they asked him could I smile, lift my arms etc, the usual ‘stroke symptoms’. They advised him to take me to A&E and get me checked out, they didn’t think I was stroking out but better safe than sorry, so off we went. I took the leaflet with me from the new med as it was the only thing that I’d changed and I had a feeling it was responsible. They were great, they took good care of me, did an EKG, neuro obs etc and checked everything, BP, pulse, sats. I spoke to them about the meds change and gave him the leaflet, he read it thoroughly and as everything came up clear test wise, we came to the conclusion that it was that causing it.
    However I know that you have recently come off of all your meds, other than pain relief and pred, which isn’t new for you, so if I were you, I’d be speaking to the Dr, today, now and getting this checked out. Don’t ignore it especially if you are set for surgery this week.

    • Thanks Gillian. I will mention it to my doctor. And I will mention it before surgery. This morning my head is clear again and I can concentrate and think normally. Well, normally for me ;). It is a scary experience. I’m very glad that the ER was thorough with you and that you haven’t had any recurrance.

      It is very interesting to feel changes in myself while the meds get out of my system, both good and bad. Today I am feeling low grade anxiety, but I think that’s simply the fact that I am having surgery tomorrow. I will likely never be comfortable with anesthetic. But I KNOW it will be fine and I will have the surgery. But I will also let my anesthetist know about my neuro symptoms. Too much information is always better than not enough!


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