Rheumatoid Arthritis and I’m off to see my GP for tea and sympathy – hold the tea.

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I am doing it tough.  My megaflare lasted three days, and remitted to…a milder mega flare.  Pain is moderate to severe in most joints and it’s constant.

I start my day by lying in bed, getting up the nerve/strength/courage to hobble to the kitchen to take oxycodone.  Flick the coffee maker.  Heatpacks in microwave.

Stand. Wait.  Head spins.  Nausea.  Pain.

Coffee ready. Load in the sugar.  Yes, I start my day with strong coffee and two big spoons of sugar. (No, sugar is not going to kill me, nor make my symptoms worse).  Strap the heat packs to my back and hang the other one around my neck.  Hobble to the couch.

Sit.  Wait.  Head spins.  Nausea.  Pain.  But at least there’s not as far to fall from a sitting position.

It is quiet now.  I have about ten minutes before I have to get the kids up.  My medications have usually kicked in to some degree by then.  My kids don’t need my help to get ready for school. But they do need my interest. My presense.  My attention as they tell me what’s on for the day, why that’s bad or good or indifferent.

So I focus on them.  And not on the pain.  And I get their lunches ready.  And I make myself another coffee. And I start to move.  And no, it’s not any better yet, but there’s no use crying about it. (Although some mornings after the kids get on the bus that’s exactly what I do.  Washing my eyes out. It helps with the inflammation J ).

Still reflecting.  My current drug list looks like this.  Prednisone, orencia, methotrexate, arava, plaquenil, naprosyn and cymbalta…plus thyroxine and metformin for pre-diabetes.  And of course targin and oxynorm for pain.

That’s a long list. And some very serious drugs. And are they helping?  Maybe?

No. Not really.  Actually I doubt they are helping at all.

So should I be taking them at all?  I want to talk to my rheumatologist. But hey, she never returns my calls. It feels a little futile to leave yet another message.  I don’t know whether she doesn’t return my calls because the receptionists don’t pass the messages on…or if I am just THAT difficult patient.  The one that nothing works for.  The one that gets her down that she doesn’t really want to admit that she has no answers for me.

So I’m going to go talk to my GP.  I’m going to tell him that I want to drop some of my medications. That I feel like I am just one big walking side effect these days. That the recent addition of Cymbalta is most definitely making me feel worse, not better.  That most people I know are not on this many medications and still feeling like crap.  That I wouldn’t mind if they were actually helping…but right now I am not seeing the point.

That I am tired.  That I don’t know what all these drugs are doing to my body long term.  Are they perhaps worse than the arthritis?  No, I know they aren’t.  Because my version of arthritis is completely crippling.  But sometimes it feels like I am gaining very little from these drugs, but risking a whole lot.  Cancer. MS.  Scary.  I just don’t think about it, mostly.

I feel like the only drug that makes any difference is the prednisone.  So maybe I should just take that for a while and drop everything else?  Give my body a break?

He will understand. He will let me vent.  And he will advise that I stick with everything until I can see my rheumatologist again.  In February.

I just need someone to talk to.  Face to face. Someone educated, who cares.  I have been feeling very alone.  There isn’t anyone else.  So he’s it.  Lots of people say they don’t want sympathy, but sometimes I do need sympathy.  Just a little bit.  My GP will give me some of that.  And he will also give me the support I need to keep going, and hang in there with the medications.  He’ll remind me that the medications give me hope.  And without them I would probably be doing far worse.  And that Orencia could take 12 months to really work for me.

We’ve had this conversation before. And we probably will again.  It’s just another essential part of my treatment plan….tea and sympathy. Hold the tea.

4 COMMENTS

  1. Wow that’s a long med list and I thought my med box looked bad. I guess I’m the opposite from you and many others I know who struggle to find meds that work for them. I’ve luckily been blessed with being dxn early, 22 yrs ago while pregnant with baby no 2, and I was put on meds right away, Voltarol (now changed to Naproxen). 2nd dmard in worked for me, mtx, and that has worked for me all these years. A few years ago Plaquinil was added to try and help my fatigue. I take regular daily pain relief in the form of di-hydrocodeine and have Amiltryptaline for really bad pain days. I guess I’m an easy to manage patient, I see my rheumy regularly & either I’m ‘trotting along’ and coping in my own way or we deal with a full on flare if it won’t settle without adding in pred.
    The thing is they don’t see us everyday, struggling. I wasn’t too bad yesterday morning at my rheumy nurse apt, my meds had kicked in and apart from sitting at my dresser and getting ready I’d done nothing. I had several sore joints but I’d not yet done much in my day so I was managing. She asked me about my energy levels though and my husband actually laughed out loud, I joined him! Afterwards we went out to breakfast and shopping to get me a jumper, a few stores later and my hips were hurting bad. After a quick trip to Tesco to grab a few things, we reached the checkout and hubby handed me the car keys and told me to go sit down, he could see I was struggling to stay upright. After a couple hours rest back at home I then had my rheumy assessment apt with my GP, who I love, she really listens. When she came to call me into her office she could see I was really struggling to get up and walk. But they only see us a few times a year, so how much do they truly understand of what we’re living with? I think if I were on so many Dmards as you are I’d want them trimmed down too and I hope your GP/Rheumy will listen to you and work to keep you on the ones that you believe are helping. I often wonder how much good/harm the meds are doing to my body but it’s swings and roundabouts isn’t it. Today is a do nothing day, I’m recovering from yesterdays busy day and I have a really bad head cold, my immune system is at rock bottom right now so the mtx has been skipped this week to give my body a fighting chance. I hope your GP apt helped, even if it was just to have someone listen and try to understand how you’re feeling.

  2. Hi,
    I was diagnosed 3 years ago. Have tried Enbrel, Cimzia (big disaster) Orencia and now take Rituxan. I have other complications as well, with gastritis and vision to name a few…The mtx has been holding me over till next infusion along with Meloxicam, fiorecet for headaches, and yes, steroids. I won’t bore you with the details of the other meds and why I take them. I work in hospitality so have to appear happy all the time, it is truly a challenge.
    Fortunately not much typing at work, I’m doing this with 2 fingers. I don’t tell people what I have, since hardly anyone comprehends it or the severity.

    • So true, Joanne. So few people have any understanding or comprehension of what a serious disease this can be. And I can definately imagine what hard work it is keeping a smile on your face all the time and dealing with people! I hope the rituxan is working for you.

      • i relate especially to your need to speak to someone EDUCATED. The complexity of RA can be mind boggling. I’ve had bouts of both anemia of chronic illness and iron deficiency anemia and I can’t take iron pills, so have had several iron infusions. As a single mom, I need to keep hemoglobin levels stable. Well, off the bed-exhausted today.

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