Needing a proper moan, new to forum

[AnaGamble]

So I am 27 and I got Sj?grens Syndrome in the family tree on my mothers side.
I've had dry eyes and mouth for probably 10+ years already, but it was manageable.
And I was brought up to "suck it up" if I was in pain or discomfort, no illness was severe enough.
Infact the only time I was sick and it was taken serious was when I was 3-4 years old and caught glandular fever.
So needless to say I've been buying saliva gel and eye gels to cope with my problems.
At age 21-22 when I got sent to an eye specialist because of suddenly having an armada of "floaters" in my eyes, I got told by the eye doctor that my eyeballs was the worst ones he'd ever come across when it came to being scarred.
He told me then that I'd always be light sensitive, that I should never use lenses and that I should buy some glasses that turn darker in bright light.
I am 27 now and I've still not been able to buy those glasses, I can't afford it.
I moved to the UK back in March 2010 to be with the first BF ever to properly love me for who I am.
My life was absolute crap before then and I thought it was finally my turn to be able to have a happy life.
I thought wrong... the financial crisis made his workplace cut his salary down massively, which made it even more important for me to find a job.
And I WANT a job, it was impossible where I lived before so I am eager and willing to do anything.
But then it slowly started to dawn on me that no I couldn't do anything, because my hands wouldn't allow it.
Just typing this bit of text has infact left my index finger feeling numb and dead.
So I can't pick any type of "easy to get" cleaning job and instead need to find some sort of office job, which in turn seem to all demand X amount of years of experience.
So this is when Sj?grens decides to properly show it's ugly face, all of the sudden I have lips with skin that peel off every day, crack and bleed unless I apply lipbalm every 30min.
I got dry patches of skin on my eyelids and around my eyes that refuse to go away no matter what cream/oil I use.
I barely dare eat anything because almost everything causes horrific acid pains that leaves me unable to stand up straight.

[AnaGamble]

I can't sleep at night because of my dry eyes/mouth/nose/lips needing more lubing every other hour and because I worry what sort of pains I will wake up with the next morning.
Not to mention of course my sore calfmuscles, swollen ankles and tingly legs being mighty uncomfortable.
I also started noticing that doing gardening/cleaning/walking to stores usually meant having to lie down on the sofa and sleep for 5h's afterwards just to regain any sort of energy to even move around.
And it's not even sleep that counts towards the sleep at night since I still get tired enough to sleep 8h's later.
Summer was horrible, couldn't be outside for more than 5min before I felt faint, feverish and my skin started looking like some sort of giraffe skin on back of arms and legs.
I can't sing because after half a song I need a beverage or I'll start coughing my lungs out.
And any sort of allergy reactions are multiplied by a 1000 because of the nose not being moist enough.
Went to a doctor and he wouldn't prescribe anything to me until he gets diagnosis on paper.
Not sure what it could possibly hurt to give me something for at least the saliva since I really don't want to start losing teeth's while waiting for diagnosis.
So going to have a bloodtest done on the 5th of December and really hoping I am amongst the %'age that have Sj?grens easily detected in the blood.
And then back to doctor for answers on tests on the 14th, now I don't like being all gloomy and pessimistic but I've not exactly been the luckiest person in the world so far in my life.
So kinda betting that no matter what the bloodtest says I'll be referred to a Rheumatologist before I get any sort of treatment which means that I will most likely not get any sort of medication until after Xmas.
My BF's family doesn't yet know about my illness nor how it affects me so now stressed about needing to let them know before there is talk about Xmas dinners and the likes.
During which I will be in pain and having to decline most of the stuff they put on the table, or be too tired to attend.
I still haven't found a job yet either (been searching every day since May, less frequent before then) which means that i won't be able to afford medications even when I get offered them.
But without medications I can't even honestly say I would be able to work in the condition I am in now.
And not being a UK citizen yet there is no benefits I can claim, neither for being unemployed and searching nor for being ill.
So there... that is everything I needed to get off my chest, except for my Raynauds problems that is.
But compared to the Sj?grens problems right now it's barely registering.
But so now my hands and elbows are screaming at me to stop what I am doing and I've forgotten to add lipbalm while typing this up so need to do that too.

[Joe S.]

Welcome to the forum. I am sorry that we have to meet like this. I have nothing that I can no great advice that will provide you with a cure.

You will find a lot of good information on this forum to manage your illness. Remember that things change over time.

[Scottietottie]

Hi Ana 

Welcome to Sjogren's world. Are you signed on with a GP in the UK? A GP should be able to prescribe for some of your symptoms alsthough a referral to a rheumatologist is a must. (An opthamologist would be good too)

I know that walk in clinics and A&E depts will see people if needed and I think that whether you are a Breitish National or not - they would see you.
How long do you have to be resident here before you can access the health service?

A GP could test for h-pylori which can lead to horrific acid pains but they are not unusual for SjS - without h-pylori. A PPI like Omeprazole can make a world of difference though. A GP should also be able to prescribe pain killers. I can no longer take Naproxen because of acid reflux but I have been given Tramadol and paracetamol which do help. If pain is really bad I take Ibuprofen as well - but short term because I know they aren't good for my stomach.

If you ever want to chat in 'real time' the SjSworld chat room is hosted between 7p.m. and 8p.m. on a Wednesday evening.

I hope you find the site useful.

Take care - Scottie 

[AnaGamble]

I'll be happy if I can stop feeling like I am 77 instead of 27. >_<
Don't mind living with perma chipping nails that is minor, but being in perma pain like now is not gonna be any kind of quality of life.
Still trying to get over the facts that stuff I dreamt of having when I got older isn't gonna happen.
For example I always wanted a huge garden with all my favorite flowers in it.
Been wanting that since I was a kid and recently stumbled over a folder on the computer full of pictures of the various kinds I wanted.
Also always planned on joining a choir that my BF's relatives are all in, they push me to join every time I see them and sort of told myself I'd join just as soon as I knew the city better.
So two things I thought I'd be fine doing and having just ripped away.
I am not dealing well with the facts, mainly because it just feels like after previous gunk in my life I should have deserved some nice and good times.
I mean how much bad luck can one life contain before it is enough.
Joined the forum simply because I have no one to talk to, my BF is being as supportive as he can and makes sure to pick up medications and foods on his way home from work so I don't have to walk to stores.
But that instead means that I lost the only reason that used to drag me out of the house.
And he would probably be happiest if I could just ignore my problems until I got medications to make me better.
But it's not that easy is it. 

Ah new reply while I was typing, yes I got signed up with a GP is why I will have bloodtests run on Monday.
Was a bit of a shock to realize a doctor only sees you for 5-10 min and that they barely want you to speak nor seem eager to listen to anything you say.
But no he didn't want to prescribe me anything until he had black on white what he was dealing with.
So really hoping those bloodtests will make him prescribe me something for the pain and most importantly something for saliva.
Good to know which ones will cause acid problems, because I do NOT want more of that.
Figured out a few years ago that with any sort of pain in my body Paracetamol was the only thing that seemed to work.
My body seems to laugh at all the other painkillers feeble attempts.

[AnaGamble]

If you ever want to chat in 'real time' the SjSworld chat room is hosted between 7p.m. and 8p.m. on a Wednesday evening.

Have written it up so hopefully I will remember if I pin it on the wall behind the monitor.

[Scottietottie]

It'd be worth getting some OTC antacid tablets or seeing the doc again and stressing the acid pain. Trouble with GPs here is they only seem to deal with one symptom at a time so having multiple symtoms confuses them!!

Take care - Scottie 

[AnaGamble]

It'd be worth getting some OTC antacid tablets or seeing the doc again and stressing the acid pain. Trouble with GPs here is they only seem to deal with one symptom at a time so having multiple symptoms confuses them!!

Well I felt unprepared to the whole situation last time, so next time I see him I am bringing my list of 18 symptoms.
Should spook the rest of his remaining hair off in one go and if he feels he can't tackle all of it then he can just book me 10 more appointments in the next week so we get enough time. 

Using Tums and Rennie's when it gets really bad but mainly avoiding foods that cause worse acid and I try to drink mugs of warm water through the day to dilute it.
Figured diluting is better than medicating nonstop.

[Pisces24]

Here is an idea. What about a paper scanning type job? Document control or work control.

I'm in the US but where I work we have a 8 people department that does that. Two people seperate all the mail that comes in, sorts it, staple checks, and basically get it ready for the scanner.      The items to be processed for each individual person are seperated by a NEXT sheet so each individual when scanned goes in the computer system as a seperate item.   The scanner you just need to watch to be sure it only grabs one paper at a time.

Indexing the items in the computer would not work for you as there is a heck of a lot of fast typing.

The top two jobs sound like that might work for you.  I've done all three and it was not "taxing" at all.  You even might find a job part time to start to see how it goes. The bigger companies would have their own depts for this but there are a couple places in town here that do that for all the smaller companies too.

Do you have temp agencies there?  You could check into them and see if they have something to offer. Even phone work is not too bad if you are doing research surveys or fund raising.  Good Luck!!!

[AnaGamble]

Well I am in the UK, been ogling the job adverts on all the good websites every day and all it does is get me down.
I've applied for every job that it seemed even half feasible that they'd consider me for.
I even got interviewed for a position as a B2B marketer using both English and my native language of Swedish.
But apparently I did not come across as enough of a w*nker... I mean self confident enough...
And the employment agency I was signed up with didn't even bother calling me to tell me I hadn't gotten the job just as soon as they realized that they wouldn't earn any money on me.
They even went through the absolutely pointless attempt of lying to me saying; "they had tried to leave a message but I must not have gotten it".
It was fairly easy to check if that was true; inbox: 0 new messages, mobile: no missed calls & landline answering machine: no new messages.
I mean why even bother insulting my intelligence by lying?
I've tried applying for temp. jobs as well but since there are so many unemployed there seems to be about 2000 people they'll chose before they pick me.
Getting impossible to stay optimistic and motivated and until I get a job and can relax about being able to afford medications and not ending up living on the street sometime early next year my flare wont stop but will just keep escalating.

[arina83]

Welcome Ana.

Sorry you're not feeling well and are having trouble finding a job. It's so hard not feeling well and not being able to do things you need/want to do. I'm also 27 and still working on a diagnosis.

Do you have any craft skills? Knitting, spinning, etc? If you do, what about making things to sell? I know that here people are very in to local, handmade items. And you can work from home, at your own pace. I've done a little spinning and weaving, but I had to quit when my hands got very painful. Doing some weaving now, which is much easier on my body.

[AnaGamble]

Feels excellent in a weird way to know I'm not the only young person on the forum.
Hate looking up Sj?grens on medical websites and they say; "the usual age is 40+".

I can crochet, cross stitch, embroider, oil paint and so on but only when my hands allow it and when my energy is up.
Not sure where I'd sell anything I made and not sure how fast I'd have to produce stuff to be able to make a salary out of it.
I have a horrible ability to not think anything I make or do being worth anything as well which of course doesn't help my morale much.
My BF wants to try and come up with something we can do form home but most things takes a starting capital and atm we wouldn't even be able to afford to move if we had to.