Steroids – my friend, my enemy and my lifeline

BBMy dog Brutus is remarkably patient when I talk to him about steroids!

Sometimes, just sometimes I use my blog to sound off so forgive me but today is one of those days.  We all need to let off steam some days and today is my day to do it.

For those of you that have read my previous blogs will know that I take low dose steroids for an auto immune disease, they help with my joint pain, they help with inflammation and they to a point, enable me to hold down a job and live my life to a fairly good standard.

I take 5mgs of prednisolone and that 5mgs has become far harder to wean off than I could ever have imagined or believed and it has become the most important drug in my medicine box.

I used to take high doses of steroids many years ago for asthma which would see me suffer terribly from the side effects and I am well accustomed to the weaning process so when I say it is harder now than it was then, I am not joking.

I am torn between a state of needing the steroids because I know that they work and hating the steroids because I have suffered extensively from their unpleasant side effects.

From experience I know that getting below 5mgs will see me cold, unwell, weak, weight loss, confused, falling asleep at inappropriate moments such as on the toilet, at work or even while talking to someone.

At 4mgs I get stomach cramps, anxiety, nervous, sound/smell reactive as in everything is too loud and smells overpowering.  As for 3mgs – well let’s not go there because I believe it is just a pipe dream.

Once I get below 5mgs; it does not take long for a relapse for the original illness that I take them for to occur and then my adrenal glands proceed to have a party with my immune system and I am not invited.

I can almost envisage my adrenals chatting to my joints and saying ‘Let’s make her joints hurt like a bitch today and tomorrow we can make her mouth dry and flare up the rash on her face’, while my joints happily agree and I pay the price in the most harshest of ways – my own body attacks me from all angles.

Each morning I wake up and my bottle of prednisolone 5mgs are waiting for me by my bed silently taunting me to take them, which of course I do at 7am every morning.

‘How hard can it be to come off these, after all I am only on 5mgs and you can’t be reliant on that dose surely?’ I have said to myself on several occasions which has led to futile attempts to wean off and then run back to the steroid bottle with my tail between my legs apologizing to myself for being so cruel to my own body.

‘I shall never do that again, come to Samantha you beauty’ I would say to the bottle of tablets on my bedside cabinet in a grateful voice and then wash a 5mg tablet down with a cup of Yorkshire tea.

Once back on my 5mg dose, all is well in my world except for intense feelings of shame and ‘steroid guilt’ that I have fallen off the wagon and am back on my full dose.  I feel almost dirty for giving in, a bit like cheating on a diet with a large block of Dairy Milk.

‘I hate this drug, how can I possibly need them this badly?’ I ask myself and then make a vow to try and wean off again in a few weeks time.

Because my friends willpower is in abundance when you are getting the benefits of your steroid dose but you don’t realise just how much they do for your medical condition until you try to wean off them – and so the cycle continues.

It really is a ‘love-hate-loathing-need’ kind of relationship that I have with this drug and a very unhealthy one that is often made worse by other people and their total inability to keep their enormous, nasty and somewhat toxic mouths shut.

‘It’s a shame you are on steroids, you would have quite a nice face’ or ‘The steroids have made you so fat, will you EVER lose the weight?’

Or my personal favourite ‘I would never go on steroids, not after seeing what they have done to you’.

What on earth gives people the right to even say that?  Think it by all means, say it to their friends if they must but to say it to my face kind of makes them look like they have escaped from the ‘house of anus’.

But hey that issue lies with them and not me but as I say ‘house of anus’ and all that.

Synacthen test and those damned adrenal glands

Of course when you take prolonged steroids, there is a chance at some point your adrenal function will need to be checked and mine needed to be checked when I became very unwell when I started to reduce my dose.   This was done in the form of a Synacthen Test.

Short Synacthen Test

I have recently had my second Synacthen Test done to see if I am producing enough cortisol and in less than a 12 month period since my last test, my cortisol results have reduced considerably which kind of makes sense when I think of how unwell I have been feeling lately.

It appears that as well as having an auto immune disease, I now have fairly severe adrenal insufficiency for which I have been told is unlikely to get better as there is a possibility that my immune system has been attacking my adrenal glands.

So now I not only take steroids to keep my auto immune disease under control, I now have to take them because I am not making enough cortisol for on my own and have to supplement them with oral steroids.

Why do I hate steroids?

‘If they help you then why do you hate them so much?’ I have been asked a few times, well I shall tell you.

I hate them because my tolerance line between sanity, self control and boundaries has been blurred when it comes to steroids and now a dose of 10mgs can make me hate the world and everything in it – yes I am THAT sensitive to them.

I hate them because although I need just 5mgs for my disease, it is a dose that is not without the long term risks associated with steroids.

I hate them because if I have an asthma attack, the doctors will automatically reach for the steroids and give me a huge dose with zero regard to what the drug does to me in high doses.  This is usually rationalized by medical staff advising me that ‘you have to be on huge doses for years and years before you get side effects’.  Which of course anyone that has taken prolonged steroids will know this is utter rubbish.

I hate them because on high doses I am aggressive, unreasonable, twitchy, constantly hungry, I ache, I hurt, I can’t sleep and not only do I scare my husband with my 0-60 on the temper scale, but I also scare myself because quite simply it is like having a hostile and abusive lodger within my body and head when I am on this drug and I cannot evict them.

I hate them because they have forced me to be aware of my own endocrine system which is something I have never had to before.  Now the thought of diarrhoea or vomiting can leave me quivering in my boots and catching the flu is not up for discussion as that will involve stress dosing when in fact a normal healthy body copes with stress all by itself without the need to take extra steroids to compensate – except my body is not normal and it certainly isn’t healthy.

I hate them because due to my adrenal insufficiency,  I walk a very fine line between just being able to function to being completely exhausted, fragile and hormonally incompetent in the cortisone department.

And finally I hate them because for the sake of survival, to not take them is simply no longer an option.

Steroids – you totally have to be on them to ‘get them’.

Links

Addisons Disease and Adrenal Insufficiency

Samantha Rose (C) Copyright August 2015

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

Sjogrens and the benefits of tear duct cauterization

ImageMy left eye immediately after punctal cauterization

Punctal plugs Vs Cauterization of the tear ducts

I have had punctal plugs in both eyes (lower) for quite some time now and although up until recently they have been tolerable, because I literally have zero tear production, I have been able to feel them when I do the slightest eye movement and not only did it feel as though I had grit in my eye thus giving me an urge to rub my eyes to relieve them, it was also a constant and blunt reminded of my Sjogrens.

I had seen my eye specialist and had asked him if I could have them permanently cauterized shut and he agreed but said that I could only have one done at a time just to see how if it would be successful.  My left eye was done last week and my right eye is due to be done in 8 weeks.

The procedure itself

I had some local anesthetic eye drops put in my left eye, the plug removed and then I had to lie on a bed where I was given a small injection around the tear duct, sorry I cannot be more specific on this but as you can imagine, I couldn’t see exactly what was being done   and where.

It was only a tiny fine needle but when you see it coming towards your eye, it is quite nerve-wracking – well it was for me anyway.  The injection did sting slightly and was a tiny bit uncomfortable but it took effect quickly and within seconds I could feel nothing at all.

The procedure itself was completely painless, honestly I could not feel a thing at all and it was all over and done with so quickly, before I knew it I was in reception making an appointment for my right eye (and paying the cash for my left!)

Afterwards

It was a few hours later that my eye began to sting and felt bruised, not really bad I must emphasize but uncomfortable and for a few days afterwards I had severe itching.  My specialist advised me to get some new reading glasses so I mentioned the itching to my optician and he assured me it was part of the healing process, my eye drops helped with this.

Has this made a difference – plugs Vs cauterization?

What has been noticeable for me is that I do not have that gritty annoying feeling in my left eye, it almost feels normal.  Normal in the sense that it is still dry and still requires drops every 5 minutes or so if I can remember, but I don’t have the constant Sjogrens reminder which to a healthy person may seem daft but to a person with Sjogrens, having that constant awareness of your punctal plugs and being able to feel them, is a constant reminder of your auto immune disease.  You may get what I am saying or you may not, I am just explaining how I feel.

For me it has been a good investment and I am looking forward to getting my right eye done in June and now I know what to expect, I will find it easier.  The worst bit is the injection and even then, I have experienced far worse in the form of blood tests etc.  The best bit – finally losing the gritty feeling in the right eye and being able to rub my eyes without worrying about dislodging the plugs.

In my personal opinion it is well worth doing.

Samantha Rose (C) Copyright 2013

Sjogrens and the Balance of Medication

ImageFriday is Methotrexate Day and even Gordon the cat is nervous for me

Many Sjogrens/Lupus sufferers will testify that getting the balance of medication just right can mean the difference between being able to function – or not as the case may be.

I am 27kgs overweight – courtesy of the steroids and whilst I joke about it, I am not happy about it either and you know what it’s like, friends/family think that they have the right to comment on your weight and whilst I appreciate that faceless strangers may secretly think ‘She is big’, that doesn’t bother me – what they think of me is none of my business but what they say directly to me is.

Let’s face it I have written about various people/characters on the train/bus but that is because I am a ‘people watcher’ and like writing about people/events that I observe – they don’t know what I am thinking or writing and I don’t know what they are thinking (or even writing) about me.  But I would never, ever go up to a person and comment on their weight or personal appearance.

Writing about complete strangers is one thing – because I am keeping my thoughts limited to my writing, I don’t know them, they don’t know me but going up to someones face and directly commenting is another entirely.

At my last specialist appointment I begged the consultant to reduce my 5mg of steroids.  This dose may not sound much but when you have been on them for over a year (initially higher dose) and are highly steroid sensitive, it can not only be exceptionally hard to lose the initial weight that you have put on but every single milligram makes a difference in terms of reduction and symptoms when the balance of medication is altered.

The plan was to reduce to 4mg for 3 months and then go to 3mgs and then remain on that and if need be, increase the Methotrexate.  Now the Methotrexate part filled me with dread because after my injection, I literally lose a day.  I get incredibly tired, nauseous, dizzy and unwell – even just two hours after the injection. The day after I am fit for nothing and normal stuff like the gym or doing my weekly Spring clean in the house is out for me.

In fact, I only have to look at the vials of bright yellow cytotoxic medication and my needles/syringes and I feel nauseous and start yawning (seriously), so you can imagine what the thought of doubling the dose does to me.

Upsetting the balance

The effects from reduction were not immediately noticeable, I reduced to 4mg a day and thought ‘this is easy’.  I expected some rebound effects of steroid reduction but what I didn’t expect was two weeks later for my mouth to become so dry that I would go all night without swallowing and wake up with bleeding and chapped lips, painful lungs, hurting to breathe, sores on my tongue and an ever so slight increase in brain fog.

Although I didn’t have a normal amount of saliva prior to reduction, it was just enough to give my teeth some protection.  Now I have almost none and my back teeth are so porous and ‘hollow’ sounding, I knew that for any extended period of not having saliva, would see my teeth paying the ultimate price by losing enamel and me losing my teeth.

My specialist appointment is not for another three months and to be honest, I don’t think my teeth would have lasted that long without developing cavities – I have to see a dentist every 4 months for x-rays and we (my dentist and I) are fighting somewhat hard for me to keep my teeth.

My sense of smell and taste have gone, I have no appetite for most of the time and can get by on breakfast which is really the only time I feel hungry.  When I do eat, the food sort of ‘sits there’ in my stomach as pretty much everything is dry.

And it is no fun not having an appetite either because you force yourself to have yoghurt and because you are not eating properly, you feel weak and you cannot function properly, a bit like running a marathon on en empty stomach – it simply cannot be done.

That was when I realized I had done something stupid and that was fixate upon my weight, totally pissed off with the comments from people that were meant to care about me that think they had the right to say something about my weight and my steroids.

And because I was so concerned about that, by begging my specialist to reduce my steroids, this has completely upset the fragile balance of my disease versus medication and now I am paying the price – and for what?

Last week I decided to go back up to 5mgs and I also decided to ditch those in my life that are not supportive of me and this illness.

Sadly I don’t know how much difference going back up to 5mgs will do as the damage has been done and I don’t know if a bigger dose is needed to ‘flip the switch back’ so to speak but as it took about two weeks to go downhill, I am hoping that it may take a similar time to crawl back to where I was, only time will tell.

Be grateful for the health you do have

As for my weight, I am going to try and go to the gym at least once a week but obviously not the day after the Methotrexate but anything is better than nothing.

As for my diet, I am going to have to go on to soft foods/soups as food sticks in my throat and it is no fun having a mouth full of food that you cant taste/smell and have no moisture to get it down.

As for my attitude well that is going to change as well.  I do admit to feeling as though I have an unwanted lodger within my body in the form of Sjogrens that I have no choice but to live with.  I may not be able to get rid of this ‘lodger’ but like many things in life, I can learn to live along side it, accept it and make the best of the situation.

As for those that don’t support me and believe me with regards to my illness, well they can be treated with the contempt that they deserve and I shall put them in my ‘too hard basket’.

Have a lovely weekend.

Samantha Rose © Copyright 2013

Stress and Sjogrens and Puppies…..

This weekend I have discovered what stress can do to the body when you have an auto immune disease (well stress is no good for anyone let’s face it!).

My new puppy Brutus, was rushed to the veterinary hospital yesterday with suspected parvo virus – luckily he tested negative but the severe gastro he did have made him seriously ill.

ImageBrutus at Murdoch Veterinary Hospital

Methotrexate and the obligatory ‘rest days’ that come afterwards

Now for those of you that take Methotrexate either by injection or tablet, will understand me when I say that the couple of days after you feel pretty crap and you have to take it easy because if you do too much, you pay for it handsomely.

My Methotrexate injection is taken on a Friday evening and Saturday I am fit for nothing and Sunday I am on a ‘go slow’, Monday I start to feel better but if I exert myself by doing to much on a Sunday then let’s just say I have used up all my spoons (read ‘The Spoon Theory’ for those of you that don’t know what I mean). See below for link:

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

Well Saturday my new puppy came – Brutus, a 13 week old Kelpie/Rhodesian Ridgeback cross and very cute he is too.

ImageBrutus (left) and my Kelpie Rocky (right)

What a difference 1mg can make

On Saturday I woke up feeling dry and in pain to the point I was actually scared, it hurt to breath in, my lungs were so dry and my throat that each time I swallowed I was choking – all Sjogrens people will know what I mean by that and as I had reduced my steroids by 1mg, I never imagined for one minute that I would notice the difference, but I did – big time.

Used up all of my ‘spoons’

So my new puppy was brought to me and as you can imagine, I didn’t rest at all as keeping an eye on a young pup that is trying to drag the fan into the middle of the room while it is switched on, amongst gathering your entire shoe collection, is akin to chasing a small child around the house – not that I have children but one still needs to have eyes in the back of ones head to stop them getting into trouble.

Sunday I woke up feeling in pain and dizzy and tired – that was it, my body was saying ‘you bitch! this is payback for not letting me rest’ and if we are talking ‘Spoon Theory’ then not only had I ran out of spoons, but I had borrowed an entire collection and was in ‘spoon debt’.

Sick as a dog

Seeing that Brutus the puppy was exceptionally sick, I drove him to the veterinary hospital, completely forgetting to take my steroids, eye drops and pain killers, thinking that I would only be a few minutes.

A few hours later I was still in the hospital and as anyone with Lupus or Sjogrens can verify, even a half an hour delay on medication can upset the balance on the whole day if not week, and basically your immune system has one hell of a party to which you are not invited – who would have thought a few hours would make such a difference?

I was nearly at the stage and I kid you not, of asking the veterinary nurse if they could give me some prednisolone and ASAP and if they could spare some pain relief.  There I was in reception for over an hour, no water in the reception area and having Sjogrens and no water is like eating Muesli without the milk.

When I was in the consulting room, it took some courage to ask the vet student for a glass of water and when she gave it to me, I virtually inhaled it as though I hadn’t seen water in years.and the vet student looked visibly shocked as this plastic cup of water disappeared in seconds and even after that, I still had a tongue like an old London cobbled street.

I had no my eye drops in my bag so my eyes were bright red and burning, especially after making attempts to cry over my critically ill Brutus pup who was now lifeless on the tablet and we won’t even discuss my swollen fingers and ankles.  Let’s just say that I probably needed as much help as the animals in reception and it was a stark reminder of just how many drugs that I needed to function in order to live a nearly normal life.

That is when you really notice the affects of Sjogrens or Lupus, when you are taken out of your routine, when you ignore your body when it shouts at you that it needs rest and it is not as though you can ‘teach your body a lesson’ and just push yourself because if you do, you pay for it – you pay with pain, you pay with dryness, you pay with dizziness, it hurts to breathe and cough – you just pay and you pay with interest.

Brutus

Brutus was transferred to another veterinary hospital and is still in on a drip although I have been told he was barking his head off this morning so he must be a lot better which pleases me as he is an adorable dog and I love him, and we both fought for our health yesterday not to mention that he fits in very well with my Kelpie Rocky and my cat Gordon as you can see below:

ImageGordon on the sofa, Brutus on the floor and Rocky on his bed – ‘the family’

Today is just another day in the life of a Sjogrens person

I did not sleep well last night at all, my joints felt so tight, I felt dizzy, my lungs hurt, my eyes hurt, my ‘everything’ hurt.  I don’t get sick pay as I am a temp but if I did, I would have taken today off in an attempt to bribe my body into behaving and to say sorry for pushing it to the max this weekend.

Auto immune diseases and stress do not go hand in hand, they are not friends in fact they hate one another with a passion.

Which makes it all the more reason to minimize/reduce stress wherever possible, except of course when it comes to sick animals/kids but that is another ball game because you don’t want to end up like me in a busy veterinary hospital almost begging for a dose of prednisolone and a glass of water and a kennel to rest in.

This morning I have had my pain relief, but have succumbed to an energy drink to keep me awake, yes I know, slap on the wrist but I am not keen on coffee and needs must.  I have also said sorry to my ‘Sjogrens self’ and promised to always carry my medication and eye drops and a bottle of water and avoid stress (yeah right!)

And hopefully in return tonight I will get a good nights sleep, no dizziness or lung pain, no swollen joints and even a bit of saliva.

And talking of avoiding stress, did I tell you that Brutus may come home today?  Go on, you have to admit he is cute….

ImageBrutus – stress in the form of a (cute) puppy

Right, it is time for me to drink some more water, there is nothing quite like being held to ransom by your immune system.

Have a lovely week everyone.

Samantha Rose (C) Copyright 2013

Life before Sjogrens

To those of you that have Sjogrens or Lupus, can any of you remember what life was like before you had it?  Can you even remember a time when life didn’t revolve around avoiding what makes you sick?

Being UV and flouro light sensitive, I have to stay in my own bubble and have minimal exposure to sunlight and by minimal, I am talking a mad dash to the office next door or to the car or from ‘A to B’ and even a 5 minute walk down the road can result in swollen joints, fluid on legs/ankles, dizziness, nausea, chest pain – you get my point.  And at work I sit in a dark office only lit by a small desk lamp, in fact if you walk by my office, you could be forgiven for thinking that I am not there.

You are my sunshine

The trouble is, I live in Australia and have done for almost five years hence the reason my ‘sickly’ state in the UK was not really picked up on, or rather I am comparable to a jigsaw puzzle that has taking years to piece together and when I moved to Australia, it was the proverbial straw that broke the camels back.  It call came to a head, I developed more symptoms which resulted in a diagnosis.

How on earth could I be allergic to something so beautiful?  Life to me is like looking in a cake shop window at all the cakes and not being allowed to touch them.  I look out of my living room window at the sun, blue skies, warm temperatures and know that for me it equates to several days in bed and a flare up of symptoms.

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Stunning sunset or ‘symbol of sickness’

Drink and be merry

I remember the times where I could go out and have a few glasses of wine, eat, drink and be very merry which would result in me doing something daft and embarrassing which could be relayed at many a gathering for months afterwards – drunken behavior, many of us do it or have done it.  I will not go into detail about how I broke my leg in a lesbian pole dancing club in Thailand in 2005 – but you know what I mean.

But even before my Sjogrens was diagnosed I knew that alcohol was making me quite sick.  After a night out my joints would ache the next morning and I would wake up unable to swallow and my face looked as though it had been sucked in and the life of me sucked out and sometimes I would wake up in the night choking due to my throat being so dry – basically I just felt crap.

So going out and getting drunk gradually became a thing of the past and I would settle on a couple of glasses of wine with a meal which after a while, would still make me feel just as bad.  I remember lying in bed one night wishing that the room would stop spinning, that the palpitations in my heart would stop and that the pain in my joints would go away.

The decision to stop drinking was taken away from me when I commenced on the methotrexate, it was a no brainer really – I was pumping my body full of potentially liver damaging drugs – steroids, plaquenil and methotrexate and even the painkillers that are a vital part of my medication.

It wasn’t easy giving up alcohol either, I was a 5 glasses of wine a week girl, hardly exceeding my units but when you have to have monthly blood tests to check your liver function, then no way would I want to add to the risks that my drugs already posed.  Now don’t get me wrong, those that are able to have a few drinks with their methotrexate, well that is their choice but for me, aside from the fact that alcohol was already making me feel sick, it just made sense to stop.

Now although there was no physical dependance there was certainly a mental one because there is nothing like seeing a chilled glass of white wine on the table to make you want to have a glass for yourself and as I am married to a chef, I actually developed what I called ‘wine envy’ when he used to enjoy a glass of wine with whatever delicious meal he had whipped up and there was I with my glass of water or orange juice and even with orange juice, rather than enjoy it, I did what many Sjogrens people do with everything they put in their mouth and that is to think ‘what the hell is this orange juice doing to my teeth?’ and ‘will this erode my enamel?’

You still have to live your life

Well you do don’t you?  And I tried to do just that last week when I went to a garden center with two of my friends.  Armed with my hat and of course being suitably covered up and smothered in total sunblock, we made our way to the garden center in temperatures being in the mid thirties.  I was going to be in the shade so I would be fine  (famous last words)

How wrong was I?  Because after ten minutes I felt the ground come up to meet me, I felt dizzy to the point I don’t know how I remained upright and my head was pounding and my stomach threatened quite violently to introduce itself to the pavement.

Making my way to the cafe, I sat down before I fell down and after we had a cup of tea, I asked my friends if we could go home and they very kindly obliged (thank you Dee and Clare xxx).

All I know is that when I got home I fell asleep and woke up intermittently at various intervals throughout the day and being aware that my ankles felt tight, sore and swollen and my fingers and hands were also swollen.  I have very little memory of the rest of the day but my husband said I was in bed for 7pm, I don’t remember him going to work the next morning, in fact I don’t remember putting myself to bed – I must have done though as that was where I woke up the next morning.

So I think that was my act of defiance, my ‘I am going to live my life’ kind of rebellion and my attempt to kick Sjogrens in the teeth rather than Sjogrens attempt to dissolve my own.  This act of defiance failed miserably and I am now back to gazing at the sunshine through the window and making my own entertainment during the times of high UV and pretending that whatever I do, is far more fun than anything a ‘normal’ person could ever do outside. (and if you believe that you believe anything)

So what was life like before Sjogrens?

  • Well, I used to go out and my only worry was did I have enough suncream on.  I used to be able to drink alcohol and go to parties – I can still go to parties but choose not to as there is nothing quite like a drunk person in your face giving a drunken lecture of some sort whilst spitting saliva at you with every word beginning with a ‘P’ (they are showing off as they have saliva and you don’t).
  • I used to only see the dentist every year instead of every four months and I now count my Immunologist, eye specialist, GP, pharmacist and dentist as part of my ‘family unit’.  We really ought to have family portrait for the living room wall.
  • My bed used to be only slept in at night time, now it is my best friend – next to the panadol osteo.
  • A joint was something I tried in Amsterdam in the form of ‘special cake’, now a joint of any kind equates to pain in my hands or ankles/knees.
  • I was quite the party animal at one point – yes I know that is hard to believe but now even listening to next doors wild parties leaves me exhausted and I can get a hangover merely breathing in their fumes.
  • I used to love swimming in the ocean, but now it is a military effort as I have to swim in a rash vest, long shorts, a hat and sunnies, total sunblock and I still get the rash over the bridge of my nose.

So what was your life like before you were diagnosed, do you have any funny stories to tell that could lighten the subject a bit? I would be most interested in your replies.

Now I am off to make a drink because last nights party at my next door neighbors that I wasn’t invited to, has left me completely shattered, in fact I could do with the ‘hair of the dog’.

Samantha Rose (C) Copyright 2013

Doctors, Dentists – and ‘stuff’

I have a doctors appointment today for some ‘Sjogrens stuff’ – anyone with an auto immune disease will know what I mean by the word ‘stuff’ as it covers a multitude of explanations, you don’t even need to go into it, just say to any other fellow sufferer of Sjogrens/Lupus and say I have ‘stuff’ going on and you will be met with the sympathetic look that tells you they know exactly what you mean.

My ‘stuff’ for today is the pain and soreness down the right side of my face and the ‘whooshing’ noise I get in my right ear which causes me to go off balance.  Do I need my ears syringed? Who knows but aside from renewing my Methotrexate injection prescription today, my GP needs to assess the latest ‘stuff’ and sort it out.

Last week I was at the dentist to get my x-rays and fluoride treatment done and next month I have a whole day dedicated to my eye specialist to have my eyes dilated and my punctal plugs checked (and ‘stuff) and at some point during February, an appointment with my Immunologist is on the cards.

It is like doctors take the place of your family and your time, effort and money is aimed at attending or organizing various medical appointments and any time and money that may be left over is spent on your drugs that you need in order to function.

I mean really, I am tempted to invite my eye specialist, my dentist, my GP and my Immunologist for tea round my house so we can get them all in one room and discuss ‘stuff’ and save us all the effort of second guessing what the other REALLY thinks about the situation, perhaps we could play board games about various Sjogrens symptoms and whoever gets it wrong has to buy the Methotrexate.

My immunologist even gave me his mobile phone number once after I got a bad reaction from a steroid injection in my hip.  I deleted it pretty quickly as I have a habit of sending text messages to the wrong people.  I mean can you imagine it – me sending a text like ‘I am in the shower naked, waiting for you’ or even ‘I have the worst period pain and could murder some chocolate’ or worse still, a message that is aimed for my friend Waitangi which usually has the word ‘anus’ in it written in childish fashion.  I shudder to think about it and you can see why I deleted his number and we wont even discuss the potential for picture messages.

I may go as far as having a family portrait on my living room wall – myself, my husband, my immunologist, my eye specialist, my optician and my dentist and even my two dogs and cat – a bit like those awkward family photos.

I just hope I don’t gather any more specialists along the way as my ‘family’ is more than big enough thank you, I mean can you imagine if I acquired a gynecologist!

Right, time to get ready for the doctors to discuss my ‘stuff’.