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

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

  1. Honey, you are the happiest, bravest and most positive person I know. You bring happiness with you and spread it around like vegemite (except it’s golden and not black).

  2. Diagnosed with Sjogren’s back in 2010, I can relate to so many of the symptoms you mentioned in this post. It has not been a fun road. We may look healthy on the outside, but if only people could “feel” how we feel on the inside. I wonder sometimes how those who don’t understand or think I’m exaggerating would deal with it if they were in my shoes. It is truly a daily struggle. I long for a day when I can feel normal again. I commend you for your openness and appreciate your post.

  3. From one who, though I talk ‘alot’, am not able to express myself, thank you! I no longer have the memory to recall the particular word I need. I could not express to anyone just how SS affects me. When I try I see them looking at me like, “You’re complaining about THAT?” So, it is easiest to just keep quiet, stay home most of the time & get along. My family is very compassionate, though, of course they can’t relate. I’m so glad they can’t! But, you put words, good words, accurate words to SS. Thank you!

  4. i’ve often said the aching and bone-deep fatigue are like having a really bad flu. the difference between the flu and sjogren’s is that the flu will either kill you or you will get better–one or another it will end. Sjogren’s is forever. the flu is the best I will ever feel. It is my baseline. Adding any other sickness to it makes life unendurable

  5. Thank you for this honest picture. I was diagnosed in December 2012 and am going through some hair loss at the moment. Do you think that your hair started thinning after taking plaquenil?

    • Luckily it hasn’t made mine fall out – prior to diagnosis my hair was falling out in clumps and it was so brittle it was literally snapping off. The steroids and plaquenil saved it really.

      I get periods of where it does fall out heaps but its better now than it ever was. I take a vitamin called Biotin as well as 4 1000mg of fish oils a day which helps.

      AVEDA do an excellent shampoo that is brilliant for Sjogrens.

  6. Dear Samantha,
    Thanks for writing about your experience with Sjogrens. I have it too. It is a terrible disease.
    I have lost so much hair and my mouth is in constant pain. I have to wear a retainer everyday to stop a tongue thrust habit that is most likely caused by my extremely dry mouth. I really do not take any meds as my rheumatologist is not sure if plaquenil would help but mainly due to possible side effects that can damage your eyes. I do take evening primrose oil and a multi vitamin. I have a RX for a saliva medication called evoxac. It does not help me at all. I would like to know what you take for hair loss.. The hair loss is devestating to me. Thanks again for sharing your experience.

    • Plaquenil have given me my life back. I haven’t had any side effects from it and get my eyes checked regularly. I have been on it for 5 years now.

      My hair falls out quite a bit but I still seem to have a lot of hair on my head but none under my arms or on my legs or anywhere else. My specialist thinks it may be to do with my adrenal insufficiency.

      I take a supplement called Biotin which seems to help keep my hair in reasonable condition plus fish oils.

      I would consider Plaquenil though as it can make a huge difference. Well it has to me for sure.

  7. I’m barely coming to terms with this because the problem is you “look” fine. People have no idea. I was just diagnosed over the past roughly 2 months. I am taking the Plaquenil but I feel like a deterioration. I went from feeling good to feeling shitty. My hair today fell out in clumps. My hair had been thinning but this is hard since I thought we were going to solve this. Its hard. First they told me I had lupus. Then I was told I had sjogrens. I was told this would be preferred over lupus by one of my doctors…. coping is a process.

    • My antibody test was negative for Sjogrens and Lupus but I have heard that it can take years for lupus to show up in the blood test – how true that is I don’t know. But when I went to see an eye specialist as I was producing zero tears, he said straight away it was Sjogrens, I also dont make enough saliva so my specialist said I fulfill some of the criteria for Sjogrens so that is how they treat me. My hair went through a stage of falling out but now it is like a toilet brush as I have so much of it, but funnily enough I dont have underarm hair or anywhere else – which could be related to my adrenal disease. Stick with the Plaquenil, it does take a few months to work – well it did for me.

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