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.....