The changing thoughts of a steroid dependent person

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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 the benefits of tear duct cauterization

ImageMy left eye immediately after punctal cauterization

Punctal plugs Vs Cauterization of the tear ducts

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

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

The procedure itself

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

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

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

Afterwards

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

Has this made a difference – plugs Vs cauterization?

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

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

In my personal opinion it is well worth doing.

Samantha Rose (C) Copyright 2013

Sjogrens and the Balance of Medication

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

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

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

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

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

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

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

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

Upsetting the balance

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

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

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

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

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

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

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

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

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

Be grateful for the health you do have

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

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

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

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

Have a lovely weekend.

Samantha Rose © Copyright 2013

Stress and Sjogrens and Puppies…..

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

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

ImageBrutus at Murdoch Veterinary Hospital

Methotrexate and the obligatory ‘rest days’ that come afterwards

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

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

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

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

ImageBrutus (left) and my Kelpie Rocky (right)

What a difference 1mg can make

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

Used up all of my ‘spoons’

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

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

Sick as a dog

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

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

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

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

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

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

Brutus

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

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

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

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

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

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

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

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

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

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

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

Have a lovely week everyone.

Samantha Rose (C) Copyright 2013

Life before Sjogrens

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

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

You are my sunshine

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

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

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Stunning sunset or ‘symbol of sickness’

Drink and be merry

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

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

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

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

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

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

You still have to live your life

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

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

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

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

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

So what was life like before Sjogrens?

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

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

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

Samantha Rose (C) Copyright 2013

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

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.

Samantha Rose (c) Copyright 2012