Living with autoimmune blog 8

Well it's been a while since I wrote a blog so I do apologise, the life of a mother has always been busy!
Since my last blog not much has changed apart from the fact that I've just got used to having autoimmune diseases, and learning to live with them everyday.
The shock and upset of diagnosis has gone, which I knew it would eventually, and I'm glad it has as you can't live your life upset and worried constantly.
For those of you that don't know, I have Sjogrens, Lupus, Fibromyalgia, rheumatoid arthritis & DDD....so far....
I also manage a group on facebook for UK citizens called Sjogrens support UK.
We now have over 1300 members, who I support and they support me.
I was diagnosed with mixed connective tissue disease around 9 years ago.
MCTD is an umbrella name for lots of different autoimmune diseases and I should say that they dont usually come alone.
So over the years I've found out i have other AI's from symptoms I've had, and no doubt I will find more!
It's really difficult to know sometimes what symptom is for which one? As they all mimick each other.
I know the dry mouth and eyes are Sjogrens and the sensitive to touch and burning is Fibro but the problem is the medication for Fibro gives you a dry mouth, infact other Meds give so many side effects too that sometimes it's better not to have the Meds!
My problem has always been that my liver dosent tolerate alot of the Meds so I can't take most of them anyway.
I'm happy to say though that in Dec last year (2016) I did get rid of one of my biggest problems and that was my gall bladder, I had lots of gall stones probably caused by autoimmune disease, and the pain was horrendous, I've not had pain like that before, and I don't want it again!
So that pain has gone now but Ive now noticed i can't take my cocodamol for pain anymore as it gives me a different pain, like a bile duct pain? It goes into spasm, which i will be seeing my gp for as I can only take tramadol and that's not good to have all the time, and it keeps me awake at night, it's like I've had 20 Coffees!
I do worry that if I have the good stuff now then in years to come it won't work on me and then what will I take for Pain?................?  Exactly!
I started out on 25mg of amitriptyline 7 years ago and I'm now on 100mg as I've got used to it, I mean 100mg!!!
And I do get pain, everyday, pain pain Pain, and I don't know from which illness it is as they can all cause pain, (see what i mean?)
I think the worst pain is my legs, I get this everyday without fail, it's like deep bone pain.
And it takes ages to go, I keep my legs warm and that helps.
And I get headaches too, although not so bad now I have the amitriptyline and a daith piercing,  yes a piercing.
It's really helped, just was sceptical at first but thought why not at least give it a go, so I did and I'm so glad I did as it's worked, and it's a very nice piercing!
If you suffer with bad headaches I highly recommend you try the daith, it works on a pressure point in the ear.
Anyway that's enough from me, and I promise not to leave it too long for the next blog.
Thanks for reading
Charlie x

Life & it's struggles blog 7

Well its been a while since I blogged, life just takes over, the weeks have been flying by and now we are nearly in June!
So what's been happening?
Well im having more tests done, ive been passed from a gastro specialist to a neurologist, and im having a tilt table test, a what? I head you say..... well basically I'm going to strapped to a bed and have the bed tilted whilst hooked up to machines to see if my blood pressure goes nuts! It's because I've been going dizzy and getting palpitations, usually after standing up.
They're looking for symptoms of POTS Postural orthostatic tachycardia syndrome.!!!!
Why such a long words! Is it it bad enough to be coping with these conditions let alone having to say what they're called too 😂
But I suppose it could be worse, and very boring.
So along with that I've been having pains in my stomach and round to the right, yep the liver again!
My very lovely gp Dr Haining arranged a ultrasound and the result was that I have lots of gall stones caused by.....yep autoimmune disease!  It has a lot to answer for! !!
On a positive note my fabulous group Sjogrens Support UK is now 3 years old and has 950 members!!! So so proud.
I've been thinking lately (thats never good)
All that we go through, our friends and family, and some plot us really do get dealt a crap hand, ive tried to put myself in their shoes and quite frankly im happy being me, I can say oh look at them they don't have a stupid illness to contend with but usually they have worse to deal with, some have lost children, some have lost loved ones, some are dying and some have been left by their partners, its happening all around me,
And its horrible.
So much so that I've really been questioning life lately. (Thats definitely not good!)
Maybe it comes with age but I feel I'm experiencing alot lately.
And learning constantly. (That is good😃)

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.