If I have any more blood taken I'd probably be dead

Tuesday 19 March – If I have anymore blood taken I’ll probably be dead

I woke up in a pool of sweat this morning (so gross, not sure why I’m sharing this but I want this to be a very honest account of my life with lupus so here you go) so yeah I woke up in a pool of cold sweat, shivering my ass off. 

This happens pretty much every morning and sometimes I wake up 3 or 4 times a night completely drenched – I have to get up, get clean and dry, get back into bed and then it happens allll over again. 

Since being diagnosed with Lupus I don’t think I’ve had a full nights sleep.  But this morning was especially severe.  Anyways I also woke up with very sore lips – right in the corners is so dry and scabby (oh wow I am so attractive).  I think this is a sign of anaemia – luckily I’ve got a series of blood tests tomorrow and that’s one of the things they will be checking.  Wouldn’t surprise me if I am anaemic too.  Oh well, we’ll see.

I’ve lost count of the amount of blood tests I’ve had.  I go to the Lupus unit every 3 months and usually have around 15 vials of blood taken.  Good thing I’m not afraid of needles really! 

Oh god and once I had to have this test to check that my muscles weren’t wasting away and they inserted needles into my muscles and then ran an electric current through the needles. They should use it as a form of torture.  The bruises I had afterwards were horrific!  Thankfully my muscles were ok but I weren’t! 

I was on a drug last year called Azathioprine which is type of chemotherapy and it was awful.  I had to have a blood test twice a week to monitor my white blood cells.  It was just so long, leaving work to go and wait in the waiting area of the hospital for like 2 hours at a time.  Luckily my boss is really good about it all.  I don’t know what I’d do if he was an arse.  This drug also had horrible side effects; I ended up in hospital because it basically ruined the inside of my stomach.  My hair got really thin and I ended up having it all cut off into a pixie cut.  I also dyed it purple…looking back I think I went a bit mad. Maybe it was a symptom of post traumatic stress disorder after the needles in my muscles. Thankfully I stopped that medication, I couldn’t deal with the side effects so I was then put on something called Mepacrine which can cause your skin to go yellow and it also causes pink tears – I think that’s quite cool though. Sami said I’m weirder than Nikki Minaj. I found that highly insulting.  She has the biggest arse in the universe and is not even good weird - she's just scary weird.  The Mepacrine worked well for quite a while – I was flare up free for about 4 months.  I stupidly thought ‘oooh yey, lupus has gone away’. Defo not working any more.

The purple pixie cut: Defo went mad there.

As you may know from my recent posts, I haven’t been well for a long time now so I’m sure this medication is doing it’s job any more.  I’ve looked at the other options and unfortunately there aren’t many.  There are two other drugs that have good results but they also cause infertility which I’m not really feeling at this age…especially with all the other problems I may face with regards to pregnancy.  There’s one more option which is a fortnightly infusion.  I’m going to discuss with my consultant next time I see him.  I’ve heard it’s very expensive so they might say no because I’m not sure my lupus is considered severe enough to warrant such expensive medication.  But if you don’t ask ya don’t get and all that.