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

Posted on September 30, 2013 by Samantha Rose

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.

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.

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

Posted on May 8, 2013 by Samantha Rose

My 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.

Sjogrens and the Balance of Medication

Posted on March 15, 2013 by Samantha Rose

Friday 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.

Stress and Sjogrens and Puppies…..

Posted on March 5, 2013 by Samantha Rose

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.

Brutus 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.

Brutus (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:

Gordon 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….

Brutus – 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.

Life before Sjogrens

Posted on January 23, 2013 by Samantha Rose

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.

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’.

Every Donkey has his ‘day’

Posted on January 15, 2013 by Samantha Rose

Good morning! – Donkey surveys his new home in Perth

Donkey’s side of the story

Who is Donkey?

Donkey sat in his cage at Perth airport in the Australian Air Express depot, he could feel his SAFE scarf tied around his neck, his thin canvas collar with a small SAFE tag containing his animal number – that was it, the sum total of his identity.

Even he was beginning to question who he was, all he knew was that he was Donkey, his first owner had died, his second one was unable to keep him, neither had de-sexed him so his burning desire to mate with every female dog in Karratha had blighted his life somewhat.

He knew he had stayed at a couple of foster homes that had cared for him very well, he knew that some things were just too tempting – like Pad Thai noodles and rummaging through everyone’s bins and he knew that Sue’s dog Malcolm was ‘top dog’ and there was only room for one top dog and it couldn’t be him.

He knew that he was going on a plane to Perth where a lady called Samantha had her heart set on adopting him to share her life with a black kelpie dog called Rocky and a ginger cat from the UK called Gordon – and although he didn’t know it yet, he wasn’t going to like Gordon.

So who is Donkey? What does Donkey have to his name? Well ALL Donkey has to his name is in fact, his name – and his collar, scarf and SAFE tag.

Donkey’s arrival

Donkey was met with hugs and kisses from Samantha, he wagged his tail – he wasn’t sure if he was supposed to but he did it anyway, it was sort of obligatory. He was sure his previous ‘crimes’ were written all over his head – bin rummaging, being cheeky to alpha male Malcolm dog, escaping, mating with the local bitches, Samantha could see his naughty crimes and he was sure of it.

He wanted to smarten himself up, he wanted to straighten his thin canvas collar and polish his tag and smooth his prickly beard but he looked scruffy, he looked tatty and really at the end of the day, you cant polish a turd.

Suddenly his collar and SAFE tag seemed the most important thing in the world to him, they ware all he had aside from his name, his history was a sad one and hardly something he could brag about and he dare not tell anyone that he was a food thief and a bin raider. So all he had to his name, was his collar, his scarf and his SAFE tag and of course, his name – Donkey.

The journey home made him feel sick, how long would he be in this home for, how long could he behave himself for – could he resist the bins and the rubbish? He felt himself being hugged by Samantha and kept giving her a somewhat grateful lick on her face and he enjoyed listening to Tori’s high pitched girly voice as she drove them towards his new home.

Home sweet home!

Donkey was greeted by a sleek black kelpie wearing a nice red collar and a dog tag. Instantly he felt envious, this dogs collar had a history, it was covered in mud, his tags chewed and scratched – yes, Rocky had a history, he had his name, his collar, his tags and a history.

After that initial walk and introduction on neutral ground, Rocky and Donkey were finally allowed to meet off the leash in the garden. Donkey had found a squeaky purple bone – that he wanted to claim it for his own, it could be his and the start of his new life would revolve around the purple bone. Unbeknown to him, Abdel had bought him that bone just for him.

Watching the curious young kelpie come towards him, Donkey let out a growl that said ‘bugger off, it’s mine’ – Rocky not being used to sharing his garden and toys and generally being rubbish at ‘speaking dog’, did not read the signals and continued to try and take the bone.

In a flash, Donkey attacked him – he had to, it was survival for this little desert dog to defend what he felt was rightfully his, his primal instincts kicked in and he fought with Rocky who was shocked, surprised and not sure how to react – a bit like a street kid fighting with a posh kid over a train set.

Samantha sat back and let it happen, why did she do that? Because it HAD to happen, boundaries had to be established, both dogs made noise, both dogs were ‘mouthed’ and both dogs had saliva over them and both dogs were visibly shaken after their altercation and stood looking confused as it was over as quickly as it started.

Donkey left the bone, Rocky left Donkey and Samantha checked to see that neither of them were hurt – they weren’t (except for their pride).

Convinced that was it, second crime committed (first was trying to attack Gordon the cat), his copybook was blotted, he just knew he would be sent away, he could feel his thin canvas collar on his neck, he could feel his SAFE scarf and the tag and he knew he still had his name – he was Donkey, ‘they’ could send him anywhere and he would still be Donkey and more to the point, his ‘crime sheet’ was growing and would follow him wherever he went.

New ‘clothes’

Samantha called him over and he felt her hands on his neck, he heard the ‘click’ of his collar and felt it loosen as it was removed from him, he had already removed his SAFE scarf earlier and buried it in the mud so he could pretend that he never was a rescue dog and he could start afresh, providing he wasn’t sent away for being naughty.

In its place, Samantha clipped on a smart thin green camouflage collar on his neck and on that collar was a huge silver heavy tag with the Australian flag on one side and his details on the other and the biggest thing engraved on the collar was his name ‘Donkey’.

Quivering with excitement, Donkey wanted to cry – his very own proper collar with his name on it. He wanted to stare at it, to touch it, he liked to hear it ‘jingle’ as he shook his head but more to the point, he was also aware of the little kelpie staring at him, confused – why was HIS owner making a fuss of the NEW dog that had already bashed him for trying to take a toy?

The little dog was only too aware of the pressure to try and behave so he could keep his home – the stakes were high and he knew it.

That night

Donkey had his own area – the BBQ area as it was too early to leave Rocky and Donkey together. He had also been given his own kennel – he had never had his own kennel before, what did he do with this large plastic house with a blanket in it? Did he sleep in it or chew it?

Beside the kennel was a camp bed with a quilt on it and next to that a large shiny silver food bowl and an even larger bowl of water and next to the kennel, a giant hide chew – was that really for him, was he still a foster dog or was this his home?

That night he was allowed in the laundry room, he could see Gordon the cat staring at him through the baby gate, he wanted to chase Gordon – the large fat ginger rat/cat but something about Samantha’s face told him he couldn’t, self control on this issue posed a big problem and Donkey had in fact built his own ‘fence’ to stop him going in to the living room to sit with his family, because quite simply – he could not be trusted.

He could feel his tummy rumbling, he was hungry, he glanced round looking for bins to empty and food cupboards to look through and wondered if there were any tasty morsels he could find?

Samantha came into the laundry room, she looked upset as though she had been crying. What had he done aside from fight Rocky and go to attack the cat? Surely his naughty thoughts could not have been discovered by Samantha, he was terrified to move, he was scared to be a normal dog so he did the typical rescue dog thing, where they don’t know what to do or how to behave so they do nothing.

Donkey sat down and wagged the tip of his tail, he wasn’t sure whether or not he should wag it, but he did anyway. Samantha sat beside him and she was crying – what had he done, had he upset her? He licked her face frantically to say ‘sorry’ for whatever it was he had done since he arrived.

He felt her arm go around him and he wriggled his small tan and white body and pressed it against hers and washed her face – it tasted salty, he would say ‘sorry’ anyway as he may have been naughty and not realized it.

‘We have a rule in this house’ Samantha said in between wiping her eyes, ‘And that rule is that no animal should ever go hungry, so do you know what I am going to do now?’

Donkey didn’t know, so he licked her face again.

‘I am going to feed you again’ and with that she placed some biscuits in his bowl. Samantha had heard of Donkey’s habit of bin raiding and knew of his food issues.

Should he eat them? Was it a trick? Was he meant to eat them? And more to the point, were they Pad Thai noodles?

Temptation got the better of him as he sniffed the gravy dust from the large dog biscuits and within a few seconds, the bowl of biscuits were gone and the bowl was clean. He licked her face again, his beard brown from gravy dust and damp from drooling.

Bedtime

Donkey sat on his camp bed, not sure whether or not to go in this kennel that was supposedly now his, he had decided to sleep on the camp bed instead. Rocky was kept inside that night to allow Donkey to relax in his new environment.

The kookaburras made their noisy call, the last call of the magpies and the odd Carnaby’s cockatoo could be heard and then aside from the cars going up/down the main road, it was silent – just Donkey – and his collar, tag and the purple bone which had magically reappeared by his kennel.

Donkey curled up to make himself as small as possible, it wasn’t cold but he shivered anyway. You see dogs that have gone from home to home including foster homes become unsettled and separation anxiety can set in, it is nobodies fault, just one of those things and each new home can add to the issues and Donkey had some issues.

He could feel his collar around his neck, his SAFE scarf had gone – buried in the mud somewhere, but he could feel the weight of his new tag and that weight was heavy, he had to be on his best behavior. This place was cold compared to Karratha, it was new, it smelt different, even the dogs looked different and whom, I ask, gave a cat THAT many rights that it could live in the whole house and not be confined like Donkey?

The little/big dog did a loud sigh, his purple squeaky bone was held tightly between his paws, and even in his sleep, Samantha could periodically hear him squeaking that bone as if to remind him where he was, or was it to remind him it was his toy, or that he was in his new home? Donkey – he now not only had his name, his new collar, his tag and his new home – he had a new toy as well, his identity was growing.

Donkey’s story – to be continued

Samantha’s Story – Donkey Diaries

Donkey and I get acquainted

Tori and I were at Perth airport, waiting to be seen by AAE, we stood outside and peered through the gates to see if we could see Donkey.

‘There he is!’ I yelled to Tori as I spotted this little/big dog sitting in his cage, appearing as chilled out as can be, with his paws crossed and a bottle of water between them.He wagged his tail and then just stared at us, did he want to come home with me – he barely showed a reaction.

We were taken through to the holding pen where I had to remove him from his cage, his whole body wriggled and his tail wagged and I felt him lick my neck as though I were his long lost owner. He smelt of bones, meat and ‘dog’ if you know what I mean, we all have our own smell and that was Donkey’s smell.

He wore a thin black canvas collar, a blue SAFE scarf tied neatly round his neck and he had a SAFE dog tag on with his animal number. This was my new dog – Donkey.

I won’t bore you with the journey home, I am sure Donkey has told you his version and that will do for me.

Gordon

Gordon was sitting on the sofa as we walked in and although Donkey was on a tight leash, he made a very quick grab for Gordon, no growling – nothing, just opened his mouth and lunged at him, tapping him on the snout and saying ‘No!’ in a loud voice, I removed him from the living room, feeling shaken – I mean everyone loves Gordon and now I had brought in an animal that wanted to eat him.

‘That is not a good reaction’ I said to Tori, feeling upset, Gordon however had refused to run away and stared Donkey straight in the eye and told him to ‘piss off’ but I think even Gordon was rattled at how quickly Donkey went for him, basically had Donkey been off the leash he would have killed him. Trouble is, Gordon was right by the door when we walked in – but anyway, it’s over and done with.

Now as many of you know or if you read my ‘Sjogrens Diaries’, you will now that I am quite sick with an auto immune disease and I take steroids, anti malarials and a low dose chemo drug to suppress my immune system so I am not that best equipped to deal with stress really.

The build up to getting Donkey had been so intense and picking him up the day after my methotrexate injection (which always leaves me tired), had sort of brought things to a head. As you can imagine the reaction with Gordon had left me shaken with feelings of ‘what the fuck have I done’ – how could I keep them separate, I had even worked through the scenario of Donkey killing Gordon and what would I do as it would all be my fault. I had lived and played out every possible scenario and to be quite frank, I was exhausted.

With regards to Rocky, I had expected a fight to break out, it is normal canine behavior to establish boundaries but I never realized how much it would effect me seeing my kelpie have to defend his patch, when in fact I should have also realized that Rocky is not a dominant male and one of them has to be and really, Donkey is the better candidate for the role. The only thing that Rocky dominates is his rubber chicken and even now, the head has been bitten off that (thank you Donkey).

So seeing my new dog go for my cat and establish himself as new pack leader in my garden all in the space of two hours was not only upsetting, but exhausting as well for me. Normally the day after my Methotrexate injection I usually rest, not act as referee between animals and the whole day had left me feeling drained, both mentally and physically.

What have I done?

I don’t know about any of you that have rescued animals but have you ever had the ‘what the fuck have I done?’ moments when you have got your new pet home? The excitement of actually acquiring the cat/dog has worn off – he/she is home, it is now down to you to iron out bad habits, raise them, discipline them and get them to blend in with your family.

It is also worth remembering that when someone is in your home or you in theirs, you are all on best behavior because you know how to behave. Well a rescue dog doesn’t know how to behave and just because he/she is in your home, bad and undesirable habits can often be displayed quite early on in the relationship and instead of earning your trust and respect, you have to earn theirs – despite the naughty stuff that incidentally, falls down to you to sort out.

I fell asleep on the sofa and woke up some hours later, my mouth was so dry, my eyes itchy and burning, my joints swollen as I had some sun exposure that day and it was typical Sjogrens syndrome symptoms of waking up feeling shit. Then I had that moment of realization – there was an extra dog in my garden, my new dog and he had a tag with his name and my address on it, he had an identichip that linked back to me and his council rego papers had been paid for – Donkey my new dog that had already tried to eat the cat and fight Rocky. What the fuck had I done?

And with those thoughts, I burst into tears (well I don’t produce tears but you get my drift) and I cried like a baby until my ribs ached, my throat hurt and my arms went numb – the past few weeks had caught up with me and let’s just say those emotions – well they well and truly kicked my arse.

I crept to the laundry room where Donkey was lying down with his hind legs splayed out in a frog like pose behind him, he looked up at me nervously – let me tell you now that dogs pick up ALL of our feelings, our own behavior and emotions, even our bad moods.

Donkey’s tail wagged a little and as I looked into his eyes, he sat up and washed his empty food bowl and then looked at me. I felt this overwhelming feeling of sadness that I was not up to the job of giving this little guy a good home and that he had already been through so much, he was better off somewhere else.

Donkey looked down at his bowl, licked it and looked up at me again.

Please Sir, I want some more

I went in to the laundry room and sat on the floor and started crying again, I felt ill, I felt exhausted, I felt tired from the Methotrexate injection, I was tired of all the medication I had to pump into myself in order to function and now I had adopted a problem dog that hated my cat and had ousted my kelpie from his position in the household.

And with those thoughts I carried on crying for some time until I felt Donkey washing my face frantically and giving me one of his huge, chunky and rather deformed paws. ‘What the fuck have I done?’ I kept repeating in between Donkey face licks.

What did we both have – I had a problem dog, my ill health, my home, my husband, my kelpie and my cat and my temp job, Donkey had his name, his tag, his collar and at the moment – his new home, everything and I mean everything seemed so damned fragile.

Trying to compose myself, I stared at Donkey and told him that in our house no animal ever goes hungry and then placed some biscuits in his bowl, as I watched him hesitate and then hunger get the better of him (rescue dogs often have food issues if they haven’t had a regular mealtime or have been in a few homes, it does NOT always mean they have been made to go hungry), he wolfed down his biscuits and then said thank you with a damp and smelly kiss and wiping his gravy dust beard on my face.

Later that night Abdel came home and met Donkey and it was agreed that he was cute and also agreed that he must be kept away from Gordon at all costs.

Donkey was put to bed in the BBQ area with a few more biscuit and his hide chew and his new purple squeaky bone, Rocky was cuddled and reassured that he was the ‘Number one boy’ and I had a shower and cried some more because I felt so ill from medication, and emotional from the entire day.

It was 2am when I heard it – the squeaking of a toy, every half an hour or so that purple bone would squeak – not very loudly but enough to hear it. And even I knew that it was probably Donkey using it to comfort himself and tell himself that he was still here – in a strange place that was meant to be his home.

6am the next morning

I woke up feeling better, heaps better, I had a mouth full of ulcers and my eyes were sore but that is the nature of my illness. Then it hit me – shit, I had a new dog that hated my cat and those awful visions of potential problems that had not occurred yet were still haunting me.

Creeping out to the garden to let Rocky out, I nervously peered over the BBQ area and was shocked to see Donkey still fast asleep on his camp bed, he had made himself so small it wasn’t true and in between his paws held quite tightly, was his purple rubber bone.

‘Donkey’ I said calmly, and then repeated it a little louder ‘Donkey’

He opened his eyes, looked somewhat confused and then jumped up to greet me, I opened the gate and he ran out to the lawn to play with Rocky, both dogs seemed to forget that I was there and proceeded to play for a few minutes, chewing on each other, posturing and sparring together. Donkey glanced up at me, then ran over and licked my hand and went back to playing with Rocky.

And from that very moment I decided to take one day at a time, Donkey was here living in our house, Gordon was still OK and it was down to us to protect him, Rocky had accepted Donkey as the alpha male and we were all about to go on a steep learning curve.

I stared at Donkey for some time after he had finished playing, do we look like his owners, are we up to the job and does he look like ‘our dog’?

Donkey, with his collar and his tag (and his name)

Who knows, but it is a case of one day at a time and friendships are not built in a day, nothing becomes ‘home’ in a day and everything worth having takes time and effort. Besides, if I am honest, the only thing that Rocky was in charge of was his rubber chicken and was never ‘top dog’ material so perhaps it is me that is more upset at him being ‘ousted’ as top dog and not Rocky who admittedly was in dire need of canine guidance.

And you know what? I think we just might be OK – baby steps and all that.

Until next time..

Note: I am not asking for opinions on dog training – I am taking advice from my vet regarding this. I am just writing this diary to express what I am feeling and how I am finding this process as I am sure I am not alone in the roller coaster that is involved in adopting a new pet.

Doctors, Dentists – and ‘stuff’

Posted on January 14, 2013 by Samantha Rose

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’.

Methotrexate Day – Don’t you just love it!

Posted on January 4, 2013 by Samantha Rose

Well actually I don’t, in fact the night before I have my injection I normally have pretty vivid nightmares that normally involve large needles and bottles of nasty yellow looking stuff and sharps bins, not to mention exceptionally vivid memories from the previous week of the tiredness/exhaustion and inexplicable symptoms that one gets after injection oneself with Methotrexate.

It isn’t even as though it hurts, it isn’t even as though you feel it go in or that it takes a whole day, it is the fact that you know how you will feel afterwards and some of the symptoms cannot be explained and only someone that has taken it themselves will be able to understand.

However it really is a rather marvelous drug and has given me my life back in so many ways and if the price to pay is feeling shitty the day after injecting, in order to be relatively pain free and have lots of saliva then hey, I can afford to lose a day.

I don’t know about any of you Sjogrens sufferers but for me a good day is having a lot of saliva, saying that I never seem to have a lot by Friday morning for some weird reason and then by Sunday I could dribble for Australia! But those of you that have heaps of saliva will never know how important it is and what it means to those of us with AI diseases that have our salivary flow compromised.

Each time I have a dry mouth, I can envisage the enamel on my teeth waving me to say goodbye because anyone that has lost enamel on their teeth will back me up in saying how ‘hollow’ your teeth feel and although on the surface look OK, it is like an empty shell and each day of having a dry mouth brings tooth decay and loss even closer. I have the dentist this Monday for my 4 monthly ‘Sjogrens’ type dental check so fingers crossed there are no hidden cavities for I don’t think I can afford fillings/root canals.

So forgive me for my excitement when I have saliva courtesy of the steroids, the methotrexate and the plaquenil, because I do get absurdly excited.

‘Do you know how toxic those drugs are and have you thought about alternative remedies to boost the immune system?’ I have had said to me on so many occasions.

In short of it, yes I know EXACTLY how toxic these medicines are, but what I also know is that they help me hugely and no, I do not want my immune system boosting in any shape or form and if alternative remedies ‘boost my immune system’ then you can keep them thank you.

Anyway, it is ‘M Day’ – injection day for me and the first time I will be giving it to myself without anyone watching/supervising me and no doubt I shall draw the yellow stuff up with a sweaty and shaking hand, knowing full well it wont hurt, knowing full well I will be exhausted and feel ‘crappola’ tomorrow and also knowing that by Sunday will be my day of staring to feel ‘normal’ and then Monday becomes ‘Folic Acid Day’. (you see I have a day for everything!)

So for all of you that take your Methotrexate today, I raise my syringe to you whilst we push aside our worries and revel in the benefits of this somewhat toxic yet fabulous drug!

Cheers!

Sjogrens – Through Hoops We Must Jump – Adult Content

Posted on December 16, 2012 by Samantha Rose

*Warning – this blog contains female related issues and some bad language*

The pathway to diagnosis of Sjogrens disease can be a long and drawn out one. I compare Sjogrens to being a huge jigsaw puzzle that can take many years to find all the pieces and piece them together and during that journey of diagnosis, you can often not only be pulled in different directions but worse still – disbelieved entirely by those that are either completely uneducated (I prefer the term ‘stupid’) or by health care professionals that are only looking at ‘one piece of the jigsaw’ and not seeing the whole or potential picture of your overall health.

My Childhood

As a child I remember having a mouth full of mercury fillings as my teeth happily decayed rapidly over a period of time. I would brush my teeth twice a day but Sjogrens people will tell you that you need to brush them within 30 mins of having a meal so you can imagine the damage brushing teeth only twice day can cause.

Dentists would accuse me of not caring for my teeth and even when I got my adult teeth, my gums had receded and I was prone to dental issues that were to plague me for a huge part of my life.

My dentists in London would firstly ask if I was pregnant as that can have a profound effect on the gums, then accuse me of ‘not flossing or brushing’ and generally not being compliant. My gums would continue to recede and I would develop cavities that were not obvious but would only show in an X-ray that they were developing under the back teeth and each and every time, my dentist would despair of me and quite frankly, I would despair of myself because there is nothing worse than being called a liar.

As an adult

Living in London was as you can imagine made for a hectic life. At the weekends I would go to car boot sales with my friend Norma – our favourite being Denham car boot sale which was huge and excited though I was, I would have to keep sitting down, swallow some pain relief and get totally exhausted on a seemingly calm morning just walking around after having some sun exposure which at the time, I did not know I was sensitive too.

Girl talk *Graphic Female Content*

With Sjogrens, the dryness throughout the body can cause certain ‘female issues’, which can result in repeated testing for various STD’s and no matter how many times that you tell your doctor that no, you don’t have an STD, they will insist on those tests being performed. It got to the stage where I almost changed my middle name to ‘Candida’ just to shut them up.

The obligatory phone call would come and say ‘No, Mrs Rose, you don’t have an STD but you do have thrush’ and then they would reel off the usual crap about what cream to purchase. I had one GP tell me that my issues were ‘Psycho Sexual’ – well excuse me ‘Doctor Bollocks’ although I will admit to finding the male genitals ugly, I do actually quite like sex thank you kindly.

Fast forward to now

Now that I have a diagnosis has any of this become easier? Well actually no, peoples attitudes are still pretty much the same, I still have the odd person that perhaps thinks that I am a hypochondriac because as anyone with Sjogrens or Lupus will tell you, we get attacked from all angles – pain, tiredness, sore eyes, sore lungs, you name it we get it. But we also have to suffer the stupidity and ignorance of many that believe illness to affect only one part of the body and even then, in their eyes, you can only get sick once or twice a year before you officially become a hypochondriac.

However I do find it somewhat amusing that when people like that are sick themselves, their colds very quickly ‘become flu’ and I truly believe that these people would not survive a week if they had to live with an auto immune disease of any description.

The funny part about it…

What makes me laugh about Sjogrens – well there has to be something doesn’t there? When I go to collect my drugs I normally am faced with some level of interrogation, warning or questioning about what I buy.

Painkillers and other drugs – an incident in a pharmacy a while ago

I had gone to a pharmacy to get my painkillers, anti malarials and steroids plus some eye drops. ‘Do you know what these are for?’ The chemist said in a firm voice, holding the plaquenil tightly in his hands. No shit sherlock, I haven’t a clue why I am taking anti malarials, I just take for the fun of it and for the fabulous psychedelic dreams that I get.

‘Do you know the side effects of these, have you had them before?’ He asked. Oh dear, it was going to be one of those days I could feel it in my water.

‘Can I also have some of those please and pointed to my painkillers that sat winking at me on the shelf. Those beautiful little darlings that reduce my pain levels from a 6 to a 2 on the pain score, they SO wanted me and I wanted them. I mean, come on – how many Sjogrens/Lupus patients clock watch till painkiller time? I know I do ‘It’s panadol-oclock’

‘Can I see your driving license please?’ The pharmacist asked me – glaring through his little steamed up glasses, his face going red with excitement that he may actually stop a ‘druggie’ in their ‘tracks’ (get the joke there?).

I passed him my license, he scanned it with his eyes and then looked up at me accusingly, hell – I was sure he was even checking my arms for track marks.

‘Did you know that the codeine in these tablets is addictive?’ He said with his mouth disappearing into the shape of a dogs bum in disapproval.

‘Yep, I know that’ I replied – I was being very restrained, I wanted him to shut the fuck up and give me my painkillers. Then I added ‘But if you want to see REAL addiction, then try taking me off the steroids because that is one baby I am TOTALLY addicted to’ (and it’s true as well)

‘Why don’t you try Nurofen?’ He said in a firm ‘I know best voice’

‘Because I am allergic to them’ I replied – my goodness I was being polite.

‘Have you seen your doctor about the reason you need these painkillers?” Mr Dog bum mouth pharmacist asked.

‘Which doctor – the eye specialist, the skin doctor, my GP or the immunologist?’ I snapped and then added ‘Take your pick’

Remembering that I needed to ask some advice for about mouth ulcers caused by the Methotrexate and I also had to buy some ‘girls’ cream for ‘down there’, I whispered to him what I wanted so that only he could hear. Perhaps this would take the heat off me asking for painkillers.

‘If you want something for THRUSH, I think that you need to see your doctor’ he yelled and I mean he yelled – the bastard, I wanted to pull his hair by now, I was getting somewhat angry because the entire shop now knew that I had a vagina – well I knew that I had a vagina myself but ‘lady gardens’ are sort of sacred and one doesn’t think of them until they are shouted about and very loudly in the middle of the chemist and then it is a case of ‘Oh look, she has a vagina.

Oh my god, it was happening again – I could already envisage going back to the doctors and telling him about my Sjogrens mouth sores and whatever cream I needed and then having to be tested for the millionth time for an STD. It wasn’t happening, really it wasn’t – no way no never. Now the chemist was looking at me as though I had made friends with a posh girl called Chlamydia.

I was so angry that I wanted to test the boundaries as you do, I was seriously pissed off. Having a disease like Sjogrens is hard enough but having to deal with people that don’t believe you are sick is one thing but then you go to the chemist to get the medication that you need and you are accused of being a drug addict with a diseased minge and mouth ulcers.

‘Can I have two boxes of those please’ I repeated and pointed to my usual painkillers and then remembered that I needed Panadol Osteo which is rather good for rheumatic pain and helps me sleep through the night.

Oh my goodness, you should have seen his face – his mouth had all but disappeared and he went rather red and said in a somewhat high pitched voice ‘you want them all – all 3 packets, do you know the dosage?” he looked around for support or was it an audience, I wasn’t quite sure.

‘Just give me the damn painkillers, my plaquenil and steroids, keep your thrush cream and oral gel, just give me the painkillers’ I said, literally glaring at him. I mean, can you imagine if I had cashed in my methotrexate script – it would have finished him completely.

I must have looked a touch demented because by now the entire shop knew that I took painkillers, had a vagina of my own, had mouth ulcers and dry eyes because I was also hugging a box of Poly-tears. Thank god I never asked for my inhalers as that would have sent the pharmacist over the edge, dribbling into his coffee.

He handed me the painkillers but wouldn’t quite let them go so it was a slight tug of war but I won because I was pissed off and must have had a face like a bulldog chewing a wasp.

I would like to say that was the sum total of my medication but I also had to buy a giant tub of Omega fish oils (helps the joints/dry eyes), plus some Biotin to stop my hair falling out and some Biotene mouth wash to stop my teeth falling out and some fake saliva as I don’t have any. My basket was literally overflowing at the counter and the shop assistant just stared in shock/amazement at the wide selection of health stuff and prescription stuff that I had to pay for. I thought for one moment she too was staring at my lady garden but I could be forgiven for being paranoid.

Are you sick again? (you just can’t fix stupid)

‘Are you sick again?’ You get people asking, well I don’t with my close friends as they really are that – genuine friends but anyone with Sjogrens or Lupus will confirm, that question is asked many times to many of us.

No you idiot, I pretend my joints are swollen or my lungs are dry and I have this nasty dry cough, I pretend that my eyes dry, red and painful, I love taking dangerous cytotoxic drugs to make myself feel better, I love taking steroids that have a whole plethora of side effects and even better, anti malarials that can cause retinal damage.

So you see, not only do we have to jump through the hoops of the medical profession to get a diagnosis, we also have to jump through pharmaceutical hoops to get our medicine, and we have to go to extreme lengths to prove that our lady gardens are not disease infested furry money boxes and that we do really like sex and routine STD checks are not required thank you.

But may I tell you what the biggest insult is? It is after jumping through the hoops above, we also have to prove to many, that yes we really are sick, the sun hates our guts, we are not boring despite the fact we cannot drink, we need lots of sleep, we are not senile – we just have brain fog, we are not fat – we are on steroids, we do still love our hair – we are just losing some of it through illness/medication and if you see us stock piling our painkillers with a look that is comparable to a starving dog, we are not addicts, it is because if we don’t get them, quite simply we cannot function.

Suggestions on how to deal with the above – all in good fun of course!

For all those that can relate to what I have said, here are some (fun) suggestions on how to deal with those issues. I don’t of course recommend you actually do these but the thought of it could cause a giggle or two.

The obligatory STD check

So you have thrush again! That is a bummer isn’t it. Go to your doctor and give them the benefit of the doubt that they will know that you know your own body. If they for the millionth time, suggest you might have sexual issues or perhaps an STD, tell them calmly that you didn’t think you could catch Chlamydia by having sex with donkeys. Don’t forget to scratch your head in confusion as you say it and then add that you could be pregnant and ‘Dobbin is the father’

Chemist issues (yes, chemists ARE only doing their job when they question you but we do and are allowed to feel frustration when it is the same chemist and it happens repeatedly)

If you go to your chemist and are faced with the questioning on pain relief, tell them that yes, you know the dosage but your preferred method of consumption is by crushing them up, mixing them up with sherbet and snorting them through a $50 whilst sitting on the toilet. If he asks you whether or not you know the effects of your steroids, tell him that no you don’t and is that why you have gained 5 stone in one week and have started to cry over Lassie movies or Home and Away?

Friends/relatives and stupid comments

What can I say on this subject – tell them to piss off but promise that when they become sick, you will laugh at them and hide their tablets and snap their walking sticks.

On a more serious note…

My own little bit of news on the Sjogrens front. I have been over ten weeks on the Methotrexate and this week switched to injections which was a bit scary as you can imagine.

Taking it in tablet form is one thing but when you get the bottle that says ‘Cytotoxic’ on the front and you actually see the needles and syringes, you sort of think ‘shit, these are the big guns’ and I don’t mind telling you that I cried a bit. Well when I say cry, no tears came out as I don’t produce them so I looked like a faker, but you get what I mean.

I am pleased to report that my nausea has disappeared as normally the day after the tablet I feel really sick but with the injection I haven’t at all, I have felt exhausted and weak but not sick.

Today I even managed to go to the gym which is great for me. I have decided not to berate myself if I cannot make the gym, just be grateful for as and when I can go and praise myself for managing any of my workout. I did 36 leg raises today, if I keep this up I could have a 6 pack – or is it 8?

My joints are a bit sore after this mornings workout but I am revelling in the fact I have heaps of saliva. You see that is how I judge my progress – having saliva excites me immensely, I am sure you understand.

That’s it for me – I am off to have my tea and sort my work stuff out for tomorrow.

Have a lovely weekend wherever you are.

Letter to a healthy person – from a Sjogrens sufferer with a ‘dry sense of humour’

Posted on December 10, 2012 by Samantha Rose

Dear Healthy Person

This morning I have woken up feeling really quite sick and I am having rather angry and patronising memories of a ‘nurse’ describing Sjogrens syndrome as at worst, a case ‘mild dryness causing inconvenience’.

What is Sjogrens syndrome? – well let me enlighten you all – Sjogrens syndrome is a chronic auto immune illness that attacks the moisture producing glands in the body – it can often ‘bring it’s relatives’ in the form of other auto immune diseases. It is incurable and a rather unwanted ‘gift’ for life with no option of a refund, it is a nasty lodger that you cannot evict and it is a part of you whether you like it or not.

So what do moisture glands do in the body? – They produce moisture, if it is wet, it needs moisture which involves your organs/tears/saliva, get the picture?

To cry or not to cry…

Crying should come easy shouldn’t it? One would think so but let me tell you that I do not produce tears so have my tear ducts plugged with silicone and have to add my tears every hour – yes I said every single hour. My eyes have deteriorated hugely, my vision is blurred from dryness and I have to have my eyes dilated twice a year and eyes tested twice a year, I cannot read or see small print at all now without glasses as the ageing affects and my long distance have both been accelerated due to the sjogrens.

Watching me cry is a laugh a minute, I literally look like I am faking it – my eyes look red/watery but that is it and it still freaks me out that such a strong and natural emotion such as crying can be denied of tears. It is rather like when you go to sneeze but the sneeze doesn’t come out if you know what I mean, you are left feeling ‘incomplete/unsatisfied’ So don’t take me to a weepy movie, it would be pointless and I would look like a big ‘faker’.

I do not produce saliva so I have to use fake saliva spray, rinse with an enzyme mouthwash after each meal, floss and brush within 30 mins of each meal and use flouride wash twice a day. The enamel on my teeth is eroding and I am getting cavities because I don’t produce enough saliva to neutralise the acid on my teeth, I will have to work exceptionally hard to hang on to my teeth by seeing a dentist every 3-4 months and it promises to be an expensive project.

My bones are sore, dry and not lubricated so they hurt – (like hell) my finger joints hurt, my feet hurt – my ‘everything’ hurts in a nasty rheumatic pain making pain relief not only my best friend but the thing that I count time on till the next dose. If I do get the slightest bit of sun exposure, my joints swell up – the sun is not my friend, in fact it hates me with a passion and frequently makes its presence known by making me hurt.

My hair has started to fall out – ‘oh but you have plenty’ people say and sometimes laugh as though it is funny. But finding your hair in the shower is neither funny nor pleasant, your closest friends that know everything about you, notice you have significantly less hair, you notice you have less hair and take to examining the mirror each day to see if ‘baby hairs’ are growing. What hair I do have is brittle and breaks off to the point I add half a cup of warm olive oil to my hair when I wash it (yes really).

I get rashes on my neck and cheeks if I go out in the sun – they itch, Sjogrens and Lupus patients are often intolerent to UV sunlight and react quite badly to it as in dizziness, palpitations, sickness, pain – this ‘flare/episode’ can last for days/weeks. Stress is another enemy of this illness, one stressful event can send you into a flare for months.

Lungs – my lungs dry out, especially at night, I can go all night without swallowing because my mouth/throat dries out due to no saliva, I can hardly drink through the night to compensate so when I wake up, my tongue is cracked and bleeding and I cant swallow until I have sprayed my mouth. Then my lungs hurt as though I have bronchitis when I breath in and this goes on for hours.

Cognitive dysfunction – Sjogrens can affect your brain/memory/thought process and the least said about me locking my husband in the house and taking his keys, throwing away his chef knife, forgetting that I have a dog and leaving him in the laundry room unfed as he silently pleaded with me that yes, he really is my dog and could I feed him now, the better.

Exhaustion – I get so tired, some days not so but it takes me ages to do anything, ages to pluck up the energy to do anything and then ages to recover. Compare it to having a lead blanket wrapped around you making you want to lie down when you would rather not.

Being a writer, I have two projects on the go – one is a collaboration with my sister Sally in Cyprus and if I say so myself it is a very good project with potential. I feel as though I am letting her down as my ability to write at the times I want to is severely compromised, so message to Sally – I am so sorry Sally, we WILL get there I promise, just bear with me and I love you for being so patient (and being my sister of course!) Sally I might add, is fabulous for a sister as she patiently has listened to my various dramas over the months and knows I am sick and always manages to cheer me up.

Muscle weakness – opening bottles or anything that requires strength has suddenly become a sport and one that I don’t win very often. I went horse riding with my friend Tori and had to be helped down off the horse as my feet went numb and I couldnt dismount.

Sjogrens can also effect the liver and kidneys – touch wood mine are so far not affected but it is like a Pandora’s Box, you do not know what ‘surprise’ you are going to get from one day to the next. I realise how important appearance is to me, with my hair falling out, and having to be on super alert to stop my teeth crumbling – I often wonder why the hair on my head is falling out and not ‘down below’ – that is a bit crap actually, because it would save me a fortune on Brazilian waxing.

Pins/needles/numb body parts – I frequently get tingling down one side of my face, or sometimes my hands feel ‘full’ or heavy, and weak and I can barely lift them, usually my left arm tends to be the weakest yet it is the right side of my face that gets the sore skin/tingles.

Well meaning people offer suggestions of supplements to ‘boost the immune system’ but I need to do the opposite because my immune system is having a party and I am rarely if ever invited.

‘BUT YOU DON’T LOOK SICK’

This has been said to me so many times, as well as ‘There is always something wrong with you’ – well technically yes, I have in hindsight, been ‘sickly for years’ and I suspect moving to a sunny hot country such as Australia, has really brought the illness that I reckon I have had for years, out into its own spotlight.

Comments about how much medicines I take are not welcome either because although I am on treatment and although the treatment is helping, it comes with huge risks and a worrying trade off.

Plaquenil – it is an anti malarial drug which is used in Sjogrens/Lupus to modify the disease response in the body and helps with inflammation and pain, noone knows exactly how or why to be precise but it helps, it takes from 6 weeks to 6 months to start working and longer to reach full potential. For me, I noticed I was actually living again after 8 weeks and now I can go out and my ‘brain fog’ has reduced and I can do more than I ever could before.

However, this medicine can cause blindness from retinal problems and I have to be watched carefully by an eye specialist to monitor this. I try not to think about the eye issues and focus on the fact that it is helping me.

Steroids – steroids surpress the immune system and are used as an anti inflammatory, I am on them for the rheumatic pain and the unpleasant symptoms of dry mouth, lungs and no saliva. Steroids also come with loads of side effects – google ‘corticosteroids’ and see what you come up with.

Now when I was younger I was on them for asthma and had the ‘moon face’, mood swings and people would take the piss out of my face and so would I and it was all one big laugh. Except now it isn’t so funny, because although now I am not on a huge dose of them, I have also become incredibly sensitive to them (steroids) and cannot tolerate doses above 7.5 mgs so should my symptoms worsen, I am between a rock and a hard place as a higher dose makes me aggressive, affects my blood sugar levels, my judgement and my ability to react to things – to name but a few of the side effects.

So you will have to forgive me if I now tell you to shut up if you dare to comment to me about steroids because that is akin to laughing at a diabetic for taking insulin.

Methotrexate – This is an old chemotherapy drug and I take a low dose of 10mg per week to add to my immune suppressant drugs. Methotrexate is a dangerous and toxic drug but also has huge benefits in certain conditions and when I first went on it, I remember thinking that the tiredness and nausea were SO not worth it after all, nothing was happening was it and where the hell are the benefits?

Well 10 weeks down the line and the drug has been a godsend and seems to have made for a formidable ‘Toxic Army’ with the Plaquenil and Prednisolone. I have cut out my midday painkillers and my sense of taste has come back and the best of all, I have saliva (yes I know, I am easily pleased but take away your saliva and you would understand).

I will not go into the side effects of Methotrexate and I refuse to worry about them – I trust my consultant to do that, which he does by sending me for monthly blood work on my liver/kidneys etc. It isn’t a ‘nice drug’ but then again, is any drug ‘nice’? At the end of the day he prescribed it because he felt that I needed it and in turn, I have to trust his expertise and judgement.

I have to take 4 cod liver oil capsules a day to help with dryness and joint pain, I have to take a vitamin B complex to stop my hair from falling out and I have to take prescription dose vitamin D as people with auto immune diseases are often very deficient in this supplement.

All of which costs – I am under two specialists which have to be paid for and you have days where you think to yourself ‘what can I afford today’ or ‘Do I REALLY need to see a specialist?’

There are worse illness that you can be diagnosed with and I remember feeling utter relief when I was diagnosed as in ‘thank god it isn’t and never has been all in my head’ But you also get to a stage where you wake up to each nasty surprise of a symptom and compare it to having a hositle lodger in your body that won’t be evicted and you realise this is as good as it gets with regards to health.

Sjogrens Syndrome – you cannot see it, it is a chameleon of an illness in the guise of many symptoms and complaints, you cannot escape it.

Because for an invisible illness – Sjogrens, Lupus and many other auto immune illnesses like it, they are debilitating, painful, draining, costly and to coin a phrase from the RSPCA are ‘For life and not just for Christmas’

So if you see your mate taking lots of medicines, or notice she cant quite keep up with you – be a real mate and don’t make judgements.

From a Sjogrens Sufferer that has a name, a personality and somewhere inside her body – a zest for life.

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