Autoimmune disease and all the wonderful stuff that comes withit......or not! Blog 6

So far the diagnosises are mctd (mixed connective tissue disease) Sjogrens, lupus, fibro, rheumatoid arthritis, reynaulds, chronic fatigue syndrome (a new one! Yes I know!) & im still waiting to see if I definitely have iih (idiopathic intercrainial hypertension) so another gob full, They never come alone!

I have received a appointment for my lumbar puncture to release the enormous amounts of cerebral spinal fluid from my head, it can't come quick enough. Everyday the pressure is just too much, headaches, dizziness, hearing loss, palpitations......... :(  what worries me is what if it isn't iih? What if after the LP I still have pain. Or what if they take too much and I'm left with a lumbar headache? I've had that before in 2006 when I had viral meningitis and I was in so much pain in my head I couldn't even go out in the car as the vibration of the engine hurt my head too much! Ouch!

When is life going to be simple? When will I not have to wait for a referral, a test, a new med, a Drs appointment? ...........that's never going to happen!

So this month alone I've had 2 hospital appointments and 2 gp appointments, 1 new medication & 3 phone calls to and from the hospital, it's ok, I'm not complaining, what's the point? This is my life, I've learnt to live like this and it really is ok, you see this month a very close friend of a close friend lost her battle with cancer, she was only 55, and another friend has had a stroke and is fighting for her life in intensive care, she's in her early 40's, and today and very young 20 something friend of a friend died from a brain tumour, although these were not my friends, they were my friends friends so I've watched them grieve, and cry, and worry, so in turn this effects me too.

What I'm getting at is that every now and then life is put into perspective, I'm extremely lucky, and I thank my lucky stars for that.

Look around you, there are sick people, dying people, homeless people, poor people, abused people, heartbroken people......the list goes on.....

And that's my point, that's why I'm not complaining, just raising awareness.

A friend of mine just last week was accused of ramming her illness down people's throats, I mean why would someone say that? It's our choice to read these posts and obviously if your reading this then you've chose to read my blog so you can't sit there complaining, "oh look she's going on and on about her damn illness again!......" Well don't read it! It's simple! 

I come to thinking that if your friends with me and you don't like what I write then don't be friends with me! Harsh but true. 

And I hope none of my friends don't feel this way? Or if they do I hope they don't tell me, just refrain from reading my blogs or endless posters about awareness, if I had a hobby like photography or flower arranging then I post pictures of that and that would be ok, so it just so happens my hobby is being ill! No not really! It's raising awareness of autoimmune diseases, well no not a hobby more of a mission! Charlie 😉 x

Coping everyday blog 5

As I'm sat hear writing this I'm thinking.... Ok how do I cope? Well i don't know? I just do, I suppose we all just cope somehow....

I've mentioned before my wonderful family, I know they play a mahoosive part in the coping question, I really don't know where I'd be without them all, my husband is my rock, he's always there for me, and nothing is too much for him, my 3 children have naturally learned to help me, even the youngest who's 21 months old, he knows if I drop something, I can't always pick it up, so he does.

My 10 year old has helped since she was 2, on bad days, putting my feet in my clothes, then I stand up and she pulled them up then I do the rest! 

That made me feel so bad, I kept apologising to her and thanking her, she never complains about it, she actually enjoys it, makes her feel special, and of course I always reward her, plus she goes to young Carers, which is great fun.

So its all down to my family that I cope, my support network are my family and friends, 

One of the group of friends that I see regularly have children the same age as my youngest, and funnily enough also suffer with autoimmune diseases.

But we all understand each other, if we can't make it, we know why, we don't have to make an excuse, we just explain honestly and we all get it because we all "get" each other.

I regularly have bad times, and I don't get much warning, I either wake up and I can hardly move or it just comes on suddenly at any time of day, which is not good if we are out! 

My legs have been particularly bad, I suddenly get pains in both legs all over, and sometimes I can catch it quick with pain killers & rest but other times it gets to the point where the pain killers don't touch it :(

And there's different kinds of pain I've noticed, I get burning pain (that'll be the fibro) I get muscular pain (that'll be the Sjogrens) and joint pain (that'll be the Rhumatiod arthritis) and because I've had so much pain, my nerves are damaged so I get nerve pain! (I know, when will it stop?!) 

I found out about gabapentin and starting taking that, but the side effects were terrible, sickness, headache, tiredness........ So I was taken off them, then I found out about Pregablin, very similar but less side effects and more expensive, they were fab! I felt really good on them, and the pain was so much better, then I went for my monthly blood test and the gp told me my liver had gone mental 😭 I couldn't believe it, I had to come off them, after more & more blood tests I decided my liver was in a permenant strop! Still is! 

I was refered to a neurologist for investigation into IIH (idiopathic Intercrainial hypertension) which basically means I have pressure in my head, this is due to having too much cerebral spinal fluid, I've had an MRI which showed nothing, but that's good because it means I don't have a brain tumour, and recently I saw an ophthalmologist and had some eye drops put in to make my pupils dialate (man that stung!) if that wasn't enough torture, he then looked in my eyes with a really bright light that blinded me! I went home unable to see anything for a few hours! This is all normal routine,the next step is to be refered back to neurology for a lumbar puncture to see if that will ease the pressure in my head.

On a good note though, I've found out that the excruciating pain I get in my legs, shoulders & neck is known as Small Fibre Neuropathy, I don't know a great deal about it but I'm learning, it can also be triggered by the cold, now that I know that, I can keep warm and stay away from the freezer isles in the supermarket! No medication as yet (that's if the liver allows it!) but il keep you posted.

One day I will find the meds that help my symptoms, but that day is not today.

Charlie x

April is Sjögren's syndrome awareness month

Life goes on blog 4

Since I started my group Sjogrens support UK, I've met so many wonderful people, on days when I'm feeling my worst I only have to go on the group and be honest with them and the support is just there instantly.

I'm not saying I need it all the time as most days I'm fine but there are days when it hits me just how ill I am and I have a good cry, just aswel it dosent happen a lot! 

There's something about knowing there are others in the same boat as you, it takes a huge load off, I don't know why but it just does? 

Like a big family, it's really lovely & comforting.

On top of my Mixed connective tissue disease, which I was also able to add Sjogrens & Rhumatiod arthritis too, I also found out that I can have a bit if everything, so other autoimmune diseases, and there are loads!

When I was pregnant with my last child I developed Lupus, a more well know autoimmune condition, 

And shortly after fibromyalgia, 

There is some argument over wether fibro is an AI or not, but it does seem to be linked somehow.

fibro is one of those illnesses that there is no test for, you can't have a blood test to see if you have it or not, it's all down to symptoms, and so many out there spend years going back and forth to the doctors trying to find out why they feel the way they do, and getting sent home being told there's nothing wrong, and years later finally getting told they have fibro.

Luckily for me I had already got my diagnosis of mctd,Sjogrens  RA & Lupus so it was obvious to my rhuematologist what I was suffering from.

My first symptom was that my skin was really sensitive, I was sure my clothes were hurting me, and I checked my body for sunburn, because that's what it felt like,

My 2 little doggies greeted me one day by jumping up at my legs, like they always do but this time it felt like their claws were ripping my skin off, I screamed and they immediately stopped and tilted their heads to one side as if to say "mummy what's wrong?" That's when I knew something was up,

But my rhuematologist knew straight away what it was.

There's usually not a lot of treatment available that's any different from all the others, I was already on plaquenil, a disease modifying anti rheumatic drug, and amitriptaline for my Sjogrens headaches, naproxen for inflammation, omeprazole to counteract the effects of the naproxen on my stomach. The endless amounts of cocodamol for pain, and the kick ass tramadol for the really horrendous pain, what else could I possibly be given?...........then someone on the group told me about Gabapentin, so I asked for it,

I started off on 100mg a day it hit me straight away! I fell asleep, I woke and fell asleep again! And the doctor told me to up the dose a week later! What? 

Luckily I got used to it quickly, and the side effects wore off, and I had hardly any pain, it was great stuff 

Then I went for my routine blood test........ The results........ liver function test= sky high! Oh poo! 

I had to come off the gabapentin :( 

Then someone on the group told me about pregablin, similar to gabapentin but less side effects and more expensive.

So I started on that, again on a low dose and work my way up, it was fabulous! Really really good stuff, the pain was under control most of the time and I felt great, like it gave me energy, without the pain and I just felt good anyway.

Then I went for a routine blood test................. Yep you guessed it........LFTs........through the roof! 

Oh poo!

So I had to come off that too :( a few weeks later my LFTs were normal again, but not for long, 4weeks later they were back up, and I wasn't on anything???

What was going on? 

I was sent for a ultrasound scan of my liver, this showed inflammation, so I was refered to a Gastro specialist,

I was quite shocked by how rude he was, but I suppose he was doing his job, firstly he asked me if I took illegal drugs? I said absolutely no, secondly he asked me was I a heavy drinker? I laughed and said no, he asked me why I laughed? I just explained I would never do any of these things, it's just not me, then he asked me how many tattoos I had (in disgust) I asked why he was so rude? I think he thought carefully after that as his attitude changed, I finally got across to him just what it's like to be me and what I go through on a daily basis, I understand he does see a lot of alcoholics and drug users that have health problems but to approach all patients like they had done this was wrong, after all I was not one of these people and also he has a job because of all of the patients he sees! 

He insulted me once more by calling me fat, by then I'd had enough! I assured him I was loosing weight and left.

It's very difficult to loose weight when you have limited mobility, all you can rely on is diet, years ago I ate what I wanted and ran for 4 miles in the evenings and pole danced, how easy life was back then! 

I didn't hear from Gastro again, my doctor is still chasing them up, I have cut out lots of fats to help my poor liver, but it's a waiting game now.....

Living with a chronic illness. Blog 3

So life carried on, as it does, and I got on with it basically. 

Every couple of months I became very ill, I'm pretty sure this was exhaustion from life!

I'd end up in hospital every now and then and feel totally alone, doctors came to visit me, I would explain things and I'd get vacant looks, silly really because there's this huge hospital that I was going to every few months and seeing specialists, rhuematologists, etc....... They knew what was what so why didn't these doctors? In the end I gave them the telephone number and said "ring them!" 

I even found out there was a rhuematologist in one of the hospitals I stayed in! Why didn't they call for her?

This was to become a common problem!

One day whilst in hospital, I was on Facebook on my phone when I stumbled across a post on an American Sjogrens group that read "where is everyone in the world today?" I glanced down the list of posts, Texas........LA..........New York.........Leicester UK........Missouri....... Hang on... What??? I scrolled back up, Leicester? The name was Cara Davidson, I immediately wrote underneath Wiltshire UK......

Hoping she would see it, then thought il add her as a friend, so I did, then I messaged her, "at last someone in the UK!" Her reply was the same " I can't believe it, someone in the UK!" 

This lead on to other conversations about the fact that there are no uk groups, and that meds, procedures benifits etc..... Were all completely different over there so we didn't understand any of it,  so we decided to start one.

Cara chose the name Sjogrens support UK. Perfect! 

 I set it up with us as admins, we scoured the American sites poaching everyone we could from the UK.

We decided to accept anybody with any autoimmune disease, be it Rhumatiod arthritis, lupus, fibro,etc...... The list is very long.

The comments were the same, "at last a UK group!" That was may 16th 2013, today the group is a massive success, and has gone from strength to strength, we now have over 500 members, friendships have been made, lots of advice given & received, and so much has been learned. 

Everyone has very similar tales to tell of doctors not knowing enough and how long it's taken to diagnose them.

 but we are no ordinary group, we play games, have competitions, we even have a naughty step! Lol and we've had virtual parties where we put up pictures of food and drink, a dance floor and music, we've had tears and we've had laughter, but most of all we are all linked by the same thing.....autoimmune disease.

The early days continued. Blog 2

Mixed connective tissue disease, what a mouthful! Sjogrens! Where do these long awkward to say words come from?

well Sjogrens was discovered  by Henrik Sjogren, a Swedish ophthalmologist.

Extremely clever I say seeing as it's such a complex illness, just about every symptom of illness I've had can be down to the Sjogrens or auto immune disease! You wouldn't think it but it's true, practically any symptom can be put down to These, so how do you know what's what? Well you don't really.

After my initial shock of being told my Sjogrens wasn't primary, that in actual fact it was secondary (meaning I have other autoimmune disease/s) Mine being Rhumatiod arthritis, I tried to find out as much as possible about this awful illness, because I think I still found it all a bit of a bad dream! 

I went to my local book store which happens to be a very large and very well known one, I went straight to the health section expecting to find a Sjogrens book, but nothing! 

I went to the counter and asked the young girl who said " a book on what?" Now I'm sure people don't mean to smirk when they say it but everyone has, its because it sounds so odd, and I admit I did the same, it's either that or they say " that's a 4 x 4 car isn't it?" (If I had a £1 every time I heard that!) 

Anyway after explaining it was an illness she typed it into the computer, after asking to spell it first of course! 

To my surprise she said "there's 1 book, it's £5.99, shall I order it?" 1? 1 book? I thought!

"Yes please" I answered.

My book arrived the following week and it was tiny, I started reading it straight away & finished it very quickly, oh dear I thought, this is going to be a difficult disease to find anything about, and I wanted to know all about MY illness! Every time someone says to me I've got..... or my friend has...... If I don't know much about it, I research it, I like to know these things, well this was about me so I wanted to know even more.

So I did what everybody says not to do......I googled it, and I actually found out loads.

Don't get me wrong Google is a good tool if used properly, I would never rely on it 100% unless it's the NHS choices website or Arthritis UK which I have used this lots of times since and found them invaluable.

I think my lack of complete understanding of this disease left me feeling very worried, therefore I couldn't talk about it, I'd told my husbands and best friend the full story  but I told my children an edited version.

I just didn't want to go through it over and over again, all I did was cry if I even thought about it, so my parents didn't find out for over a year, I just didn't want to worry them.

And it took a further 2 years to come clean to all my friends and others who asked.

My first medication I was offered was Amitriptyline for my bad headaches, 25mg every night,

For the first 3 months all I did was sleep! And that was a low dose but then I've always been a cheap night out ! 

I didn't mind though because the headaches were a thing of the past, oh the relief! :)

The next medication was Hydroxychloriquinine or plaquenil (cheaper but the same) this is a DMARD (disease modifying anti rhumatic drug) so it dampens down the symptoms of the arthritis.

I didn't think much of this drug until I was taken off it because my liver threw a strop and then I really missed it! Lots of pain :( 

I would now actually recommend it.

The third drug and these are all pretty much standard I might add, was Naproxen which is an anti inflammatory. And of course omeprazole which comes part & parcel with Naproxen to protect the stomach.

I definitely need that as I've suffered with my stomach, acid indigestion, heartburn, IBS which is all related to Auto immune diseases (see I told you!) 

The forth was of course good old pain killers, co codamol to be precise, 30/500mg which is the highest dose but I already had them in the past for my bulging L5 S1 disc in my back, 

Once on these lot I started to feel so much better and my symptoms were calming down. 

What a relief!!! 

Find us on Facebook Sjogrens support UK : https://m.facebook.com/groups/454589521294750

#myimmunesystemattacksme #morethanmeetstheeye 

The early days. Blog 1

Hi & welcome to my first blog, never done this before so im learning as I go,
In May 2007 I was diagnosed with Sjogrens, I had already Googled my symptoms and Sjogrens came up so when the rheumatologist told me, I wasn't surprised, i ended up at the doctors because I had Reynaulds Phenomena (bad circulation in the fingers) but all id read was that sjogrens is a "condition" that causes dry eyes and mouth, little did I know that it was an auto immune disease..... ok I didn't even know what an auto immune disease was!
After discussing all this with the rheumatologist I left feeling rather emotional, I sat in the car in the podium car park in Bath googling all these long words and terms and realising that this was a hell of alot more than just dry eyes & mouth!
As time went by I found I couldn't tell people, they wouldn't know what I was going on about anyway so why bother?
And in the end I thought I wont mention it in fact I wont think it and it will all go away and il be fine because really I felt great, just a dry mouth really, my eyes only hurt when I wear perfume so I just won't wear any, ever again, and my wrists hurt every now and then when I changed gear too much on a long journey, its fine I can get over this!
My rheumatologist had arranged to see me in 3 months time, and as the appointment loomed I thought about cancelling, after all I was fine, but I went and assured him all was well, this went on and on, appointment after appointment, eventually he said "il see you in 6 months" yes! I thought, see im ok!
By 2009 I went back to work full time in the local pre school, only in a pre school I hear you say, well it was full on, 30 kids per session, 2 sessions per day, and paperwork! Learning journeys, Summative assessments!
Within a few months I became so ill, I ended up in hospital, I told the doctors about my diagnosis, each & everyone of them leant in towards me as if they had not heard what I said, so I repeated myself,, "I have Sjogrens" the puzzled look remained "how do you spell that?" !
This happened again and again roughly about every 6 months, I end up in hospital with, wait for it.........exhaustion!
Why didn't they listen to me? Why didn't they phone my specialist? I felt like a fraud! But I did have an geniune illness, and by now I was really feeling it :(
So life went on and I started medication, hydroxychloriquinine to be precise, a dmard the leaflet said, Disease Modifying Anti Rhumatic Drug.
This sounded good, fingers crossed it was!
My rheumatologist explained to me, it was kind of exhaustion in the fact that my immune system is working too hard and attacking me, therefore the complete exhaustion made sense, and feeling ill was a gland in my brain that was producing cerebral spinal fluid, this gland was being attacked just like my tear glands and saliva glands had been.
So this little gland in the brain can make me feel so bad? Umm yes! :(
Eventually the boss at preschool (after being sooooo supportive) suddenly wanted me gone, after all I wasn't reliable was I?  I suppose I totally let them down? I could have taken it had she and the committee told me honestly but she decided to make up a story about me not pulling my weight and before they could say anymore, I told them to shove it, not as plain & polite as that but I actually wished I had used those exact words now, for months after I felt such sadness over what I actually felt at the time was the only solid thing in my life, and it was gone.
So by not working I actually felt better, I wasn't so tired, I could take a nap when I needed and slowly I felt like I had control back.
obviously I was still ill but I learned to pace myself, and sometimes I did too much and paid for it but I was still learning.
as I visited my rheumatologist more & more at the Royal National Hospital for Rhumatic Diseases, I learned that I not only had Sjogrens, but I actually had Mixed Connective tissue disease. (MCTD) this is where there's more than one, I had Rhumatoid arthritis too.

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