Adrenal Insufficiency and steroid reduction

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One Step at a Time – can really take you places

(Photograph by Samantha Rose)

It has been quite a while since I started to reduce my steroids in an attempt to ‘wake my adrenals up’ (my doctors words not mine) and so much has happened since I my last blog update about it.

Firstly I am now down to 3mgs of prednisolone which is a dose I never thought that I would get down to but it has been far from easy.

One of the things that happens when weaning off years of steroids aside from going through withdrawal (and something that nobody warns you about), is that the very disease/illness that you took them for in the first place will often flare up again.

I have had another Synacthen test which has shown quite a bit of recovery but still an inadequate result but hey, any recovery is recovery that I was told would not happen right?

I am also having regular morning blood cortisol tests and my last one which was taken 2 weeks ago; has shown adrenal function within normal ranges! Obviously I am thrilled about this but my specialist has told me that a normal morning cortisol is normal on my 3mgs of steroids and if I didn’t take them or had a particular stressful day before the blood test, it would be different.

So it has been decided that I stay on 3mgs for the sake of my auto immune disease and also because the Synacthen test still shows an inadequate response and that is the one that counts as in how my adrenals work under stress.

On the whole I am doing very well on 3mgs providing there is no stress at work, or I don’t engage in strenuous exercise or I don’t get sick.  The other week I had a high temperature and I felt dreadful and had to triple my dose for three days.

Sometimes at work if I am really busy then I have to stress dose because my 3mgs of preds is simply not enough.  This I will add is on the advice of my doctor.  With adrenal insufficiency I get very specific symptoms such as the feeling that inside my head has gone ‘dead’ – a bit like how your leg feels when you lie on it for too long, all heavy and you don’t want to put weight on it.  My muscles kind of feel like they are burning, like someone is pressing on them (press hard on your own shoulder muscles till it burns and that is the feeling that I get in various parts of my body).

I get a bad headache and it is normally over one eye and painkillers will not relieve it.  I suffer nausea as well, dizziness and the usual brain fog and that is when I have to take 4mgs of hydrocortisone otherwise it gets progressively worse and I am unable to drive home.  Still, it is positive that I recognize it even though it is frustrating that I can’t just stop the 3mgs like a normal person without adrenal insufficiency.

Sadly my joints are now hurting like a bitch and I am getting some pretty nasty AI symptoms back again so this has effectively been a ‘trade off’ because each morning I wake up so stiff in my joints plus pain in my hip joint that it takes about 2 hours to ‘warm up’ and get more mobile. Some days I ponder on my choices and from where I am looking, there are not that many to choose from.

The first choice is weaning off the steroids which is what I am trying to do because if I thought having Sjogrens is bad, I have discovered that adrenal insufficiency really is the work of the devil.  It has been like going to hell in a basket with Cliff Richard on replay and I cannot even begin to tell you how shit you can feel and only someone that has been there will understand.

The second choice is to remain on 3mgs for the time being and stress dose when needed which is what my doctor would like me to do.  This dose is not fabulous for a good quality of life in terms of joint pain, as well as the adrenal symptoms if I am having a bad day.  My specialist has increased my immune suppressants which have made a significant difference to my AI symptoms so I guess this is the choice I have made.

I still dream of stopping the steroids one day because some days I feel ‘normal’ but have been cruelly reminded that I am not when I have overslept and woken up late for my tablets and then I pay the price by feeling awful for the rest of the day like my body has gone into steroid-debt and punishes me heavily for it.

When things go well with my health and I feel OK, it is all too tempting to imagine if I could manage with the medication and I do have to remind myself that it is because of the medication that I get the good days and not in spite of it.

So that is my update and I think it is quite a good one.  A year ago I was in a pretty bad place with a refusal to accept this and advised it would probably be permanent and I have proved that diagnosis wrong and at the same time learned to accept ‘my lot’ so to speak.

I don’t know if my adrenals will get completely better as I find it quite hard to believe that 5mgs of preds shut my adrenal glands down in the first place – that is not what the asthma doctors tell you now is it!

I also don’t know if adrenals can have good days and bad days in terms of steroid production or if the damage to my adrenal glands has been halted by the immune suppressants that I take or if they can get worse again.

But for now I am happy and grateful for the recovery that I have made and if I can give one tip for anyone going through similar, I would say not to give up hope even if it takes years to get there.

Because the journey that is adrenal insufficiency is a long and painful one that needs to be taken slowly and while you may not notice it straight away, time and patience usually pays off in one way or another – either by acceptance of your disease or improvement in your overall condition and whichever one happens, you are a winner.

Samantha Rose (C) Copyright July 2016

 

 

The funny side of adrenal insufficiency

Always look on the bright side of life (or your adrenals)

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Araluen Botanical Gardens Photograph by Sam Rose

‘What?’ I hear you say, ‘You mean to tell me that there is a funny side to this horrible disease?’  Well let me tell you now, if I don’t see my own funny side; I shall be driven to curling up in a ball and chatting to my own adrenal glands to beg them for mercy – whoever ‘Mercy’ may be.

This blog is to try and find some humour out of what is happening to me and who knows, if it helps you find some humour for yourself then it won’t have been in vain.  All of the following stories are true and have been said to me but descriptions have been changed to protect the innocent and in some cases – daft.

Are you drunk Samantha?

I am not a big drinker, don’t get me wrong I used to be a party girl but now one glass of wine and I am tipsy so one glass is where I tend to stop.

However, when I get low on cortisol one of the most noticeable symptoms is slow speech and an inability to ‘problem solve’ or string a coherent sentence together.  The lower my cortisol gets, the more confused I get and the slower my speech gets.

‘Oh my god, you sound drunk, have you been drinking?’ someone asked me the other week.

Was there any point in saying no that I had not been drinking?  Probably not but I tried anyway and stumbled and fumbled around in my own mind to sort out the words I would need to in order to form that sentence.

The trouble is with low cortisol, you can’t find the right words when you need them so you have to improvise without sounding more confused than you already do.  It’s a bit like Scrabble really, only it’s ‘Scrabble inside your head’ and you rarely win the game.

‘Are you? are you drunk?’ the person repeated.

‘No I am not’ I replied, at least that is what I think I said but it may well have come out as ‘No drunk not, I am’ or some equal pile of mixed up words.  But never mind, the right words were probably there, just in the wrong order so who’s arguing? Not me that’s for sure.

Phoning the health direct line for medical advice

Now that is a laugh a minute let me tell you.  I had to call them the other week as I was very unwell after my synacthen test and could barely get off the sofa.  I do need to emphasize that it was not a 000 call to go to ED but I did need sound medical advice and quickly.  I had started off with the number to call a doctor out who then referred me to the health direct number.

I was put through to a very nice nurse who took all of my details down and decided what to do from there.

I gave her the run down and what happened and told her that I felt weak, shaky, dizzy, tummy cramps and had not pulled myself together since my synacthen test the other day and did I need to take extra steroids as I wasn’t quite sure what to do (Endo didn’t want me just stress dosing for anything which is fair enough).

‘Do you have a droopy face?’ the nurse asked on the other end (she was following protocol and going through the check list so I am in no way berating her for it as she was very nice).

I pondered for a moment, did I have a droopy face?  I don’t know, some days I wake up looking like a well bred boxer but wasn’t sure about droopy.  Grabbing my jowls and trying to tug them down, I tried to work out if I was droopy – I wasn’t.

‘No I haven’t got a droopy face’ I replied, ‘I have adrenal insufficiency and all I need to know is do I stress dose?’

‘Do you have chest pain?’ the nurse asked.

‘No, I don’t have chest pain’ I replied patiently – with my slow speech that probably made her want to ask me about my (non) droopy face again.

‘Have you been drinking?’ the nurse asked.

Resisting the urge to tell her that I had quaffed a cup of Yorkshire Tea in the morning but secretly pretended that it was brandy, I sighed ‘No, I have not been drinking’.

‘Please, can you just advise me what to do and if I need to stress dose as I feel very weak and shaky and I can’t really go far from the sofa, that is all I need to know’ I said to her.

‘Do you have left sided weakness?’ the nurse persisted as she went through the check list.

‘No, I am weak all over’ I said fretfully.

‘Do you have any pains in your head?’ she asked.

Now I had pains in many places but thought it best not to go there.

Anyway, the questions continued and I answered as best as I could and once the nurse had finished she entered the information on the computer for a few seconds while I patiently waited.

‘Right, the results say that you should consult your doctor within 12 hours’ she said firmly, ‘Can you make an appointment tomorrow morning?’

‘It is Sunday tomorrow, my GP is closed’ I sighed.  Sweet mother of god I was going to cry, except that I didn’t have the energy and I don’t produce tears as I have Sjogrens syndrome.

‘There might be an emergency doctor open near you now’ the nurse suggested.

‘I can’t drive, it’s 10pm at night and I seriously can’t get off the sofa, can you check with someone if I need to stress dose?’ I pleaded.

‘I am sorry I can’t answer that but the computer said you need to see a doctor within 12 hours so you could try the surgeries near you tomorrow, I can give you a list if you like’ the nurse suggested in a hopeful voice.

Having visions of the UK comedy program ‘Little Britain’, I could imagine her saying ‘Computer says no’.  I stopped myself from laughing and just replied that yes I would go to the doctor tomorrow and then secretly wondered if it would be safer to take a steroid now or just become all religious and pray that my adrenal glands would behave and hold out for my morning dose.

Anyway, I could not leave the sofa and that was where I remained until my husband got home and I was able to go to bed to ponder on if I had a droopy face or not and whether I should make a suggestion to Health Direct to include adrenal insufficiency on their check list.

Girls’ stuff – please skip this bit if you are an easily embarrassed male

Sometimes, just sometimes with adrenal insufficiency we ladies get issues ‘down there’ and require cream to make it better.

I walked into the chemist a couple of weeks ago to ask for some special cream and the chemist lady did not speak very good English.

‘Do you have this cream?’ I asked her and then said the name of the product.

The lady looked confused and then nodded firmly and led me to one section and after a few seconds of hunting around and running her finger alongside each shelf, she grabbed a box and triumphantly held it up.

‘Here you are, this should help’ she nodded and showed me a packet of mosquito repellent wipes.

Not knowing whether to laugh or cry, or call Health Direct for the suggested assault on my ‘lady-garden’, I spluttered ‘Are you serious?  that isn’t it, this is the cream I need’ and I repeated the name again.

‘This will fix it’ she repeated and tried to hand me the 90% DEET repellent wipes.

By now I was horrified and had even began to doubt myself and stared again at the wipes and wondered if there was some miracle ingredient in the wipes that could help ‘down below’.

‘I don’t get mosquito bites down there thank you, don’t worry, I shall try somewhere else’ I muttered. Thanking her for her help, I left her standing there clutching the wipes wondering where it had all gone wrong.

My ‘lady-garden’ had a lucky escape, I mean those bastards would have taken the skin off – can you imagine that, I mean CAN YOU IMAGINE!!!!!

I left with no cream and then ventured into the next pharmacy with high hopes that someone would be able to help me without trying to burn my vagina off with DEET.

The next pharmacy

‘Hello, can I help you?’ the assistant asked.

‘Yes, do you have this cream?’ I whispered to her discreetly, using my finest Queens English accent.

Set the scene – the chemist was busy, like packed busy – full of people type of busy and the word of the day was not discretion.  An old lady that was asking for everything to be repeated to her, suddenly found her hearing when she heard the word ‘thrush’.

‘Oh if it is for thrush and all that kind of stuff, then it is over there!’ she said loudly and then demonstrated to the aisle that virtually screamed ‘female embarrassment’ in a loud voice.

I found what I wanted and sloped off to the checkout and spotting some Glucogel lollies in a bag by the check out, I threw some into my basket with the cream and waited my turn to pay.

The assistant lifted up the box of cream and studied it briefly, I was almost tempted to ask her if she had tried it before but thought better of it.  Besides, I was starting to feel hypoglycemic and was staring at my back of Glucogel like a starving person because if I didn’t get some in my belly soon I would start sweating like Tony Abbott in a parliamentary debate.

And that brings me to my next issue – blood sugar.

Why don’t you have a banana……

I swear to god if anyone else suggests me eating a banana I am going to go into banana rage and smack them round the face with it and place the skin on their head like a yellow octopus.

Like many people with this disease, I suffer from blood sugar issues and without feeling any hunger or without any warning, I can go hypoglycemic very quickly.  I have to carry glucose tablets in my car and frequently have to eat a few before doing certain activities.

‘Why don’t you have a banana?’ someone asked me one day, ‘It’s far better for you’.

My answer to that is that Glucogel lollies shove my sugar levels up far quicker than a banana.

Besides, bananas tend to go brown and mouldy in the car and can’t be kept in the glove compartment for emergencies and if I am going to go hypo then you can keep your bananas, I want Glucogel and lots of them.

You do know that salt is bad for you right….

No, really?  I never knew that.

‘Oh my god, don’t you put a lot of salt on your food’ people have said to me.

Salt to me is like Danny and Sandy from the movie ‘Grease’ – we just ‘go’ together and at certain times of the day, salt is my best friend.

I have been in cafes where I have poured salt on my food and have had shocked looks from people which makes me want to pour even more salt and make a salt mountain on my food and stick a flag in the top of it saying that I have climbed it and survived to tell the tale.

So when you ask me if I know that salt is bad for me, please forgive me if I turn the entire salt dispenser up in the air and pour it directly in my mouth just to prove a point, although I may just vomit afterwards to spite myself.

Nose like a beagle dog

I am convinced that I have the scenting abilities of a beagle as my sense of smell is so hypersensitive.  I am quite surprised that HM Customs haven’t contacted me to sniff bags at Perth airport, no really they should consider me as I would be very good and would not be averse to wearing a dog harness to do it.

This smell sensitivity can pose a problem with certain types of food as I clutch my nose and try not to gag because someone at work is heating up their lunch.  It is very hard to smile and talk to people when you are holding your breath and trying to convince yourself that their food is not toxic and that chicken and broccoli is a nice healthy lunch and not the poison that your snout thinks it is.

I have been known to hold my breath for a considerable time to get away from people eating their food so that I don’t have to smell it while inwardly wishing that I could catch a bad cold so that my nose would block up and I wouldn’t find their curry/broccoli/lasagna quite so offensive.

We have gone to war, no really we have, I am sure of it

Whilst other people ignore the sound of a plane flying over the house or enjoy the loud sounds of a war movie, my body in fact thinks it is going to war and my adrenal glands yell out ‘we are all going to die – right now!’

‘Can you turn the TV down?’ I plead with my husband who has the volume turned down to the point he can barely hear it.  But I can hear it and those guns and bombs are gonna kill us, my adrenals say so and they don’t lie – do they?

We had a fire drill at work the other week and my head knew it wasn’t real but once again my adrenals decided to be naughty and misbehave and convince my body that we had gone to war with the Martians, which of course took me a couple of days to recover from it.

This is a huge worry for me as my body thinks it is constantly under attack and I am wondering if I should dress up as a soldier when I go out so that I am prepared for battle.

Can you imagine that happening in a shop, a fire alarm goes off and everyone is calm as you like and I am wearing army greens while yelling ‘Save yourselves and your families!’  It’s not funny really, well I guess it could be if I ended up hiding under the ‘feminine hygiene’ section of the pharmacy taking shelter next to ‘those special creams for ladies’.

You have joined the Nana club

I have turned down or cancelled so many plans because I have used up all my spoons (The Spoon Theory) and not just used up my spoons, but probably taken some out of the cupboard in a desperate bid to make it until the end of the day.

I don’t like myself for it either and mentally tell myself off for falling asleep on the sofa while my friends are out living their life and I sleep away mine.

Plans can change on the very morning that they are mean to happen.  It starts off with a battle between my mind and my sofa and goes something like this:

‘Come on Samantha, let’s get going so we can drive to the park’ I say to myself.

The sofa is winking at me in all of its leathery goodness ‘Come on sweetie, just imagine yourself lying on me with that blanket on you.  You don’t need the park, you need me and you know it’. (if sofas could talk, that is what mine would say)

I find with adrenal insufficiency that my day technically ends when my steroid dose runs out and that I seem to metabolize it very quickly so when my sofa asks me to lie down, it is because it has cruelly collaborated with my adrenal glands and that is the decision they have come up with.

Sofa Vs a trip to the park – Sofa wins the battle and I become a Nana, those adrenal glands are so manipulative.

The trials and tribulations of Pilates and adrenal insufficiency

Yes, I said that the word ‘Pilates’ and adrenal insufficiency in the same sentence.

This poses a real trial for me because I start to get low on steroids at around 6.30pm which is when Pilates starts.

Don’t get me wrong, I manage to do some of it but after about 30 mins my ‘slow button’ comes on, my speech becomes slurred, I feel dizzy and the prospect of touching my toes usually ends up with me needing to lie down on the floor while the other girls show off in their Lycra and tie their legs in knots and bows and stuff while I try and make lying down on the ground fashionable.

I usually leave the studio with shaking legs and tremors, flushed cheeks, racing heart and hair like a lavatory brush but hey, I have Lycra on and anything is possible with Lycra because you can fool yourself into thinking that you are fit purely by wearing it.

Oh I had adrenal fatigue once and I recovered…

Did you, I am so pleased for you but I do not have adrenal fatigue, my adrenals are insufficient. They are not tired, they are not taking a break from all the hard work that they are meant to do and they are not lazy.

They are just slowly reducing in function and the end result is that I am not producing enough cortisol for survival and without my oral steroids I will eventually die and it won’t be a pretty sight either – a bit like Cliff Richard in his leather pants, that isn’t pretty either but let’s not go there.

There is no supplement that substitutes oral steroid tablets and whilst I am not being ungrateful at the suggestion, I have to emphasize that I do not have adrenal fatigue, my adrenals are in a very poor state and the word ‘fatigue’ doesn’t even come into play.

I only wish that I could have a word with them and ask them nicely if they could play the game and stop messing up my life quite so much – temperamental little devils that they are.

I have never heard of that symptom before….

And finally I feel that I have to address this issue and that is where some doctors/nurses claim that because they have never heard of a particular symptom before, you cannot possibly be suffering from it.

A nurse once said to me ‘I have never heard that steroids can cause mood swings, that is not what I learned at Uni’

Looking at her as though she had grown two brains (well one brain would be nice), I decided to not argue as there would really be no point but secretly I wanted to rock back and forth and fear for the future of all adrenal/cushings patients and anyone on steroids that might be in her care.

Some of the adrenal insufficiency symptoms that I suffer from (to name but a few)

  • Salt cravings
  • Vibrating in feet
  • Painful feet – feels like someone is hitting them with a hammer while doing the River Dance on them.
  • Dizziness
  • Nausea
  • Anxiety/on edge
  • Sugar cravings

Some of these symptoms do appear to be recognized by the medical profession but trying to rationalize some of them to other people is like trying to polish a turd and where does that leave us as patients?

I think what scares me most about this attitude is that if the treatment, understanding and belief of our disease begins and ends with what doctors and nurses have learned at university/medical school then I believe that our future is not only uncertain, but quite terrifying.

Anyway, that is all from me for tonight, now if you will excuse me, I am going to take my slow self and go to bed like the Nana that I am with my trusty steroid bottle that I shall place beside the bed ready to greet me (and my droopy face) in the morning.

Samantha Rose (C) Copyright Sept 2015

The Adrenal Insufficiency ‘Banking System’ and ‘Steroid Debt’

Having just been recently diagnosed with steroid induced secondary adrenal insufficiency, I have been struggling to come to terms with the symptoms that come with the long name.

The doctor said he has no idea as to whether or not it is permanent but rather bluntly warned me how hard it is to wean off when you take the drug for your auto immune disease.

Not to mention having to balance the risk of flares from my connective tissue disease when trying to wean which will hinder the tapering off the drug. I will say that for me personally, Adrenal Insufficiency is harder to deal with than my auto immune disease and recently I have started to compare it to a banking system and before you think I am nuts, please read on and humor me.

The Bank of Adrenal Glands

I have my daily quota of hydrocortisone that I take at various intervals throughout the day and if I have a particularly bad/hard/strenuous day and don’t stress-dose; then I end up in deficit – to my adrenal glands.

By this I mean paying the price of muscle weakness, joint pains, confusion, exhaustion and dizziness to name but a few things. So when I take my hydrocortisone the next morning, I still feel like I ‘owe’ my body from the day before and can’t quite get on top of the steroid ‘debt’ and it takes me a while to catch up.

I went to Pilates yesterday which I found exceptionally difficult as I felt dizzy, had chest pains, weak muscles and it got to the point that I had to stress dose halfway through the class.

There I lay like a beached whale on the ground while everyone else was doing marvelous things with their legs and arms and I had to just do random movements because I could not keep up and looked as though I had restless arm/leg syndrome with the feeble movements that I struggled to do.

To make matters worse, this morning I had overslept through my alarm and was an hour late for my steroids.  I was woken up by my husband telling me that I had overslept and was over an hour late with my drugs.

It was one of those moments where I woke up nauseous, very lightheaded, heavy arms and legs and felt so dizzy that I couldn’t get out of bed and had to fumble around my bedside cabinet for my steroids and then wait until they had decided to work.

I could almost hear my adrenals shouting ‘You are SO going to pay for this’ while personally assuring me that the rest of my body would be heavily involved in the assault.

Now I feel like I am ‘further in debt’ to my body and kind of owe it more hydrocortisone and like any other ‘lender’, the interest is mounting up on it as well.

That my friends is my ‘Bank of Hydrocortisone’ and it is a ruthless banker let me tell you and it knows no boundaries in terms of hounding you until you pay up.

Better go as I have a debt to pay in terms of 4mgs of steroids and my adrenal glands are waiting (impatiently).

Help and Support

http://www.niddk.nih.gov/health-information/health-topics/endocrine/adrenal-insufficiency-addisons-disease/Pages/fact-sheet.aspx

Samantha Rose (C) Copyright April 2015

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

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Even Gordon hates the Methotrexate

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

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

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

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

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

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

‘Methotrexate’ I muttered, blushing furiously.

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

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

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

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

Humble Pie and all that…..

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

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

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

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

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

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

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

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The beginning of my swollen knuckles and very sore as well

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

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

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

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

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

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

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

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

Helping Oneself…..

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

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

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

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

So far so good…

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

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

Walk a mile in someones shoes…

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

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

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

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

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

With friends like that, who needs enemies..

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

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

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

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

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

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

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

Because you are worth more than that.

Samantha Rose (C) Copyright Sept 2013

Sjogrens and the benefits of tear duct cauterization

ImageMy left eye immediately after punctal cauterization

Punctal plugs Vs Cauterization of the tear ducts

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

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

The procedure itself

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

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

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

Afterwards

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

Has this made a difference – plugs Vs cauterization?

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

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

In my personal opinion it is well worth doing.

Samantha Rose (C) Copyright 2013

Sjogrens and the Balance of Medication

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

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

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

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

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

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

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

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

Upsetting the balance

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

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

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

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

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

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

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

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

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

Be grateful for the health you do have

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

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

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

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

Have a lovely weekend.

Samantha Rose © Copyright 2013

Stress and Sjogrens and Puppies…..

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

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

ImageBrutus at Murdoch Veterinary Hospital

Methotrexate and the obligatory ‘rest days’ that come afterwards

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

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

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

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

ImageBrutus (left) and my Kelpie Rocky (right)

What a difference 1mg can make

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

Used up all of my ‘spoons’

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

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

Sick as a dog

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

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

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

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

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

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

Brutus

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

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

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

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

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

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

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

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

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

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

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

Have a lovely week everyone.

Samantha Rose (C) Copyright 2013