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!!! 

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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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