Sjogrens and Throwing Ones Toys (and Methotrexate) out of the Pram

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Even Gordon hates the Methotrexate

It had to happen sooner or later, even my practice nurse wasn’t surprised when it did – yes I threw my toys out of the cot, lost my temper with my situation, my illness, myself and ultimately my medication, oh yes and my consultant as well.

After seeing yet another specialist at the hospital – same team but different doctor, going through the whole process of giving your medical history which in my case is not consistent as I have memory issues, thinking ‘Yep, I like this guy, I hope I see him again’ and then finding out each different visit will bring a different doctor and eventually loss of confidence, I finally lost the plot and my sanity.

It was an ordinary day after the hospital visit and the day before Methotrexate injection day when I had a (inaccurate) moment of clarity.  I was not going to tolerate this disease (Sjogrens) any longer, I was fed up with my blood request forms sometimes reading ‘SLE’, sometimes reading ‘Sjogrens’ and sometimes both in the diagnosis section, I was fed up with feeling sick from my injection and fed up with feeling sick from missing my injection – you get the picture FED UP.

Thursday was rebellion day for me and I telephoned the hospital and cancelled my appointment, then Friday I threw a brand new box of 5 vials of Methotrexate in the sharps bin – I felt liberated, surely by putting them in the bin my body would realise I didn’t need them?  Yeah right!

No injection for me on Friday and the following week I had decided to dispose of my sharps bins and the only place I could take it to was my GP.

‘What is in the sharps bin?’ The nurse asked with a disapproving look on her face, she knew what was in the bin, she needed to make sure I knew what was in the bin.

‘Methotrexate’ I muttered, blushing furiously.

‘Well, if you want to throw it away, then see the doctor first to make sure you are making an informed decision’ She said firmly and before I knew it, I had an appointment booked for the next day to discuss my actions with my GP.

‘But why can’t you see me all the time, you are a doctor, you know what you are doing?’ I demanded to my GP the next day, he responded with that pitying look that screams ‘Oh dear’ and replied ‘You need to see a specialist and I shall reinstate your appointment’.

And that was that, my appointment as quickly as it had been cancelled, was rebooked and just literally days later, appeared in the post like a nasty Telstra bill that winks at you through the envelope and calls you a ‘wanker’.

‘Damn it!’ I thought, ‘Sjogrens wins again’  Ah but had it?  I had still gone a couple of days without my Methotrexate – I didn’t need it, Oh no, I was in charge of my body and whilst I may need a specialist, I did not need the Methotrexate, in fact had I not been so dependent on my 5mgs of predinsolone and my Plaquenil tablets, I would have binned those as well and not only that, told them to ‘piss right off’ as I did so.  But that really would have been chopping my nose off to spite my face, actually it would have been more akin to chopping my head off to spite my neck and my gut feeling told me not to be so daft.

Humble Pie and all that…..

By the following Monday my joints were sore and not in the usual niggle way that they are, they were like protesting big time and even the Endone wasn’t working.  Now for me, Methotrexate makes me feel crap – I lose two days and gain 5 but I have got to the stage where even drawing up the drug makes me dry retch and I am sure I am not alone in that, hell even my cat Gordon runs away when he sees me get my injection ready.  After the dry retching comes exhaustion and drowsiness and my body generally protests because the drug is so toxic and goes against what your body is meant to do as in suppress your immune system, except as we all know, those of us in the Sjogrens/Lupus club have our immune systems attack us like the enemy we are not.

The next day for me, is spent feeling nauseous and the slightest smell of food can make me feel like vomiting – except that I never vomit but have taken an aversion to some foods as in Curry, Chilli, Spag Bolognese, etc.  And to make that worse, I also have to contend with intellectually and hormonally challenged females that no matter how many times they are told that no, I cannot get pregnant, what I have is hereditary, and at 46 years old I am too old to reproduce and finally, yes they love their children and I am pleased for them but I don’t feel the same way and am not about to get pregnant to fit in with what they perceive to be ‘the norm’.  So as you can see, Methotrexate comes with side effects – nasty ones and with that, brings out the stupid from society to make their own hormone surging judgements.

The day after methotrexate is a big challenge, I love doing my housework and take pride in a nice home but since I have been on this drug, it is all I can do to skim around the house with a vacuum and have resorted to scouring pages like Groupon and Scoopon in a bid to get a discounted Roomba or Robomaid to make my life easier – as my husband does all the cooking and I do the cleaning, we are a team and that is how we work.  Although Abdel has said he would pay handsomely to see our dogs herd up the Roomba or Gordon the cat ride around on it but that is another story.

All those of you that take methotrexate, I am sure understand these sick feelings, the exhaustion, the dizziness, the nausea, the feeling so drained and weak that even lying on the sofa is not enough, quite simply you could melt through it and dissolve through the sofa if you could.

So you can imagine the moment of liberation I felt when I threw my brand new five bottles of the stuff into my sharps bin and took it to my nurse to dispose of.  Allow me if you may, that momentary joy for it was just that, momentary.

Back to ‘humble pie’ – by the following Friday I had deteriorated hugely, I could barely type, my pain levels were on a 6/10, my brain fog was dreadful, my rash on my cheeks was making a guest appearance, my feet felt as though they had been smashed by hammers and quite honestly, I felt like I wanted to die.

Typing is my job, I do it well and pride myself on the fact that I can type 90wpm (touch typing).  Except for when I suffer from temper tantrums that involve me throwing my drugs that enable me to type, into the bin and then it all goes pear shaped as you can see from the photographs below.

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The beginning of my swollen knuckles and very sore as well

After two weeks my ‘everything’ hurt, that is the only way I could describe it – ‘my everything’.  I honestly thought that I could think myself better, I believed by throwing my drugs in the bin that I would rid myself of the nausea and exhaustion, not to mention the risks associated with the drug itself,  but in fact I had caused myself to relapse and had done far more harm than good and more to the point, it was all my own fault.

On the second Friday I was due to take my injection, I decided that was the time to eat humble pie and I telephoned my trusty and excellent pharmacist and asked him to put another script out for me.  After being told it would be ready in one hour, my colleague and good friend Rhoda, drove me to the chemist to pick up my ‘Holy Grail’ that is the methotrexate and I also bought myself a brand new sharps container for good measure along with a chocolate Freddo bar as a treat.

‘You only had a script for that recently?’ the pharmacist said looking concerned.

‘I know, I threw them away’ I replied and looked embarrassed – actually I was embarrassed and I make no bones about that fact.

He looked at me sympathetically, nodded and without further question, gave me my stuff and told me to take care and I went on my way.

I injected myself as soon as I got home, realising that after just two weeks if my joints were that bad, imagine if I had waited longer and how crap I would have felt.

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My wedding rings had to be soaped off due to my swollen joints

It were as though we had never been parted – the methotrexate and myself.  Having developed a psychological aversion to injecting myself (according to my GP), I had began to associate the injection itself (which does not hurt) with nausea and feeling lousy – a bit like my cat when he goes to the vet and sees his annual booster being drawn up.

Helping Oneself…..

What could I do to make things better? I asked myself several times and came up with an idea of getting our nurse to inject me and after speaking to my GP, it was agreed that every Friday I would go to the surgery to have my injection which would remove the stress and routine of me drawing up ‘the yellow juice’ because even looking at the vial makes me queasy.

It went OK, the nurse did it and said ‘You have done your girl thing and had your temper tantrum, us girls can do that, it had to happen and now its time to knuckle down and take your drugs’ She said firmly.  She was right, I knew it and she knew it.

I attended my specialist appointment last week and spoke to him of my concerns of seeing a different doctor each time and the issues that surround it.  He has agreed that I will see either himself or the other consultant and has decided to try me on Cellcept – starting with a half dose and doubling up to full dose this Thursday.

Then if that works, weaning me off the Methotrexate and then slowly weaning me off the steroids.  I am only on 5mg of steroids but when we attempted to get me down to 4mg, I could not believe just how much 5mg was helping me until I tried to reduce.  In terms of asthma, 1mg is nothing to reduce by but in auto immune conditions, it is a significant amount.

So far so good…

I have been on the Cellcept for nearly a week and will double the dose on Thursday, so fare the only issue I have had is it hurt my stomach badly this morning when I took it without food.  The literature it came with said it can be taken with or without food and this has been backed up by the pharmacist at the hospital and the specialist so I have decided to take it with food.  Except you cant take it within a couple of hours of consuming dairy but that is no hassle to me.

It worries me that I am taking such toxic drugs but I am also pleased that the specialist is proactive enough to want to get me off the methotrexate and the steroids, I feel like we have a plan to follow and a target to aim for.

Walk a mile in someones shoes…

Up until now I have had little sympathy for the temper tantrums of those (adults) with a long term illness of some sort that dont take their drugs – insulin/inhalers etc.  I mean if you are sick, you should just put your ‘big pants’ on and take your medicine and up until now I have been good.

But these past couple of weeks it has dawned on my that like a cute puppy, Sjogrens is for life and not just for Christmas.  You can’t demand that it is taken back and you get a refund, it is a hostile lodger that has taken over your body and you cannot shift it and all the screaming, crying and stamping your feet will simply not work.

You can throw your ‘toys out of the cot’ and your medicines in the bin, you can try and convince yourself that it is mind over matter and you can cancel your hospital appointments but at the end of the day when you are in the cold reality of your own company, that bastard Sjogrens will jump out from behind the door and shout ‘Boo’ at every opportunity.

So instead of me fighting myself, the consultants, the medicine that I take and the reality that I have an incurable disease that no, alternative medicine is NOT going to cure, I have decided from this day forward, to fight only one thing and that is the disease itself because that is the only ‘enemy’ when you think about it.

And I can do this by taking my drugs as and when prescribed, and instead of brooding on my concerns about hospital appointments and drugs, I can let the specialist know so he can brood on them for me, after all that is what he is paid to do and trained to do.  And between me, the drugs, the doctors and my attitude, I reckon we could make for a formidable army and a force to be reckoned with.

With friends like that, who needs enemies..

Which brings me to my next point.  I have decided that I only want those in my life that believe me and will support me – those that don’t can kindly ‘fuck off’. (Please don’t excuse the bluntness because I mean every word of that – ‘fuck off’)

Quite recently I had someone (whom I shall not name) claim that I was making out the pain of my illness was not as bad as it was and that I was playing on it.

This disease and others like it take away your self confidence, make you self conscious about your appearance, the drugs can make you feel awful and if you are on a high enough dose of steroids, can make you put on weight.

Having the disease itself to contend with is one, thing, having the medication to contend with is another, not to mention worrying about feeling well enough to hold down a full time job is difficult because for me, some days I have to drag myself in to work and clock watch for each painkiller dose and come home so tired that I fall asleep on the sofa and barely see my husband.

So contending with friends/family that think you are exaggerating, putting it on, playing it up, refusing to understand and believe is something that I/we could all do without.

If you have gone through similar with friends or family not believing you then I would suggest one thing and one thing only, cut them out of your life because they are not worthy of having you in theirs.  Honestly, you don’t need that kind of crap because you have enough to contend with – ditch them and surround yourself with decent, honest, positive and inspiring people only.

Finally, as I have discovered, we are all allowed a temper tantrum now and again with regards to our health, but do yourself a favour, don’t let it be at the expense of your own health.

Because you are worth more than that.

Samantha Rose (C) Copyright Sept 2013

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