The changing thoughts of a steroid dependent person

Posted on August 7, 2017 by Samantha Rose

A nice pretty photo to brighten your day – Denmark, WA

(Photography Sam Rose)

It’s been ages since I last blogged for a variety of reasons. I have been working on my book which will be out for publication next month.

Plus I have been feeling utter rubbish with my health and adrenal insufficiency. Honestly, if I thought having Sjogrens was hard then I was sadly mistaken because having your adrenal glands behave so badly is ten times worse.

It was pretty much decided last year that my adrenal insufficiency was for life and not just for Christmas and after a couple of years of trying to wean off by just 0.5mg of preds every 3 months and feeling like I was going to die – twice, that it was time to call it quits.

Anyway, that is where I am at the moment, living with this horrible imposter that makes me feel rubbish for most of my day and live for my next dose of steroids. There has to be a better way, another way or surely this is all a big fat mistake – right? Who knows, not me that’s for sure. But here is my daily diary of the thoughts that frequent my head every day without fail.

My 5mgs of preds used to last all day, but now they don’t – I have to split them up and despite what you might have read or heard, some of us absorb drugs quicker than others or just have absorption problems.

5am – Briefly aware of my hands and feet having an altered sensation, the small bones in my hands and feet hurt, the tops of my thighs hurt. Am I awake? No I am not, I am trying to hang on to the nice dream that my adrenal symptoms are dragging me away from. I refuse to wake because life doesn’t hurt so much when you are asleep. Yes it would be prudent to wake and take my steroids but no, I won’t – let me sleep please and take your dizziness and nausea with you.

7am – I am awake, the alarm has told me it is time to get up, except that I can’t. I feel really dizzy and want to vomit and the tops of my thighs hurt with a period pain type pain. Sometimes the pain is in my lower back as well and it is sharp, but not always.

I sit up and take my 2mgs of preds and then lie back down until 7.30am, not because the steroids have worked because they haven’t by then as they take at least an hour, but because I simply cannot get up. I lie in bed and wait until I feel a bit better.

I briefly flirt with the idea of going to the gym but my leg muscles feel too weak and as I can only just get in and out of the car early in the morning, I think the leg press is out of action, don’t you?

7.30am – I am up, go me! Top Queen for getting out of bed like a champion when I feel so shit, I deserve a medal.

9am – I feel human – almost and enjoy my breakfast, actually I feel pretty good and ‘normal’ whatever that is. I have a confident walk, I can have a laugh and everything is just perfect – until someone decides to put something in the microwave that smells too strong and then my stomach wants to punish me and make me vomit.

But that is OK, I still feel normal like everyone else – except for the cooking smells, but I can ignore them.

10am – This is good, perhaps I don’t need these steroids – think I can ask the doctor to wean me off them. I hate steroids, I hate them more than Celine Dion, I hate them more than celery – I just hate them. Yes that is what I will do, I will ask my doctor to wean me off, I don’t need them and if I am strong then I can get off them – easy!

10.30am – I have been super busy, my face feels like it is being squished in a vice, my head is hurting and I have brain fog. I feel sick and if anyone puts curry in that microwave then I will cry or vomit or even both – a bit like the Exorcist.

And while you are at it, you can turn those lights out and stop talking and laughing because quite frankly it is too noisy and too bright. My muscles are starting to ache and it hurts to get off the chair. But I reckon I can still ask my doctor to wean me off the preds, even though I know I have tried before, this time it will be different.

I feel sick, who in the name of fluffy kittens is heating food up – any food, stop it and stop it right now! Does anyone have any salt or pickles? I will sell my soul for salty goodness, come on, someone must have salty goodness and no, I do not care about my blood pressure.

11am – It’s steroid time! Give me my 1mg of preds and give it to me right now. Come to Samantha you beautiful pretty little white tablet, I love you so much, how could I have ever thought of talking about you so badly and asking my doctor to wean me off you. Do you forgive me Mr Prednisone? Get.In.My.Belly!

12noon – Come on preds, do your magic and I will love you forever.

1pm – What a beautiful day, let’s go for a walk – my goodness I can march like a champ, check me out, I am normal! Who needs the preds, surely not me because I feel normal! Go me, check me out walking like a healthy thing looking all normal and showing off. Adrenal glands, you don’t rule me, I rule you so take that and stuff it with garlic.

2.30pm – I am dying, no really I am. I am going to sleep so don’t try to stop me. Stop squishing my facial muscles, it is not funny. Shut up everyone, just shut up – don’t eat smelly food, stop teasing me with your salt and just stop everything. Did I say that I wanted to wean off the preds? Really? Are you sure? You are such a liar.

3pm – Hello Mr Prednisone, get in my belly and do your magic, how has your day been? No, I never said wean off, we are mates aren’t we?

3.30pm – Please work quickly, I am nodding off and dribbling down my own cheeks and I feel sick.

5pm – Feeling good sister! I think I can conquer the world, I am wide awake – this is brilliant. Check me out walking up and down those stairs, even when I don’t need to – purely to prove that I can. Actually, Preds – I don’t need you, I am going to ask my doctor to wean me off you because I don’t do dependency my friend so please go and find someone else to invade.

I am going to walk my dogs, work on my book, hug my husband, have a shower, make some tea and feel thankful for my health.

6pm – Don’t mind me, I am just going to fall in the bath, we can walk the dogs and watch a DVD later – I am going to ask the doctor to wean me off the preds. My husband who has been patiently waiting at home for me, nods knowingly – knowing that none of it will happen.

After a soak in the bath, I sit on the edge of the bath because my muscles are refusing to let me stand up. Perhaps I will work on the book tomorrow and just watch a DVD with my husband.

7pm – What a brilliant DVD, I can’t stop yawning this compulsive desire to yawn is taking over. Sorry I haven’t seen you today, haven’t seen the dogs – you are all so lovely and I love you so much, maybe tomorrow?

11pm – Has the DVD finished? How can that be, I only stopped for a snooze. My dogs look at me accusingly and Gordon the cat looks mortally wounded while my husband has resigned himself to that is just how it is. As for me, I feel crap and all I can think about is yes, you have guessed it – steroids.

Accusing looks from my pets

(Photography by Sam Rose)

I take my last 1mg of preds and go to bed. I promise myself that when I see my doctor, I will ask to wean off. Steroid dependency is something that happens to someone else and I am too strong to let it happen to me.

Until I realise that it HAS happened to me and how strong I must be for living this crap day in and day out. In fact, I am going to award myself the title of ‘Champion’ just to make me feel better.

Steroids – our only defense against adrenal insufficiency and the drug we love to hate, The real strength comes from acceptance and learning to cope with the condition which is something that I am still coming to grips with.

I am getting there though, slowly but surely.

Talking of which, I have 90 minutes until my last dose, but whose counting……

Samantha Rose (C) Copyright August 2017

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.

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’.

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’.

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.

The Pigaloo Diaries

The magical world of talking animals and my view on life

Tag Archives: Auto Immunity