Wednesday, February 9, 2011

what is Lupus & when do i quit??

some of you may know this already but i was diagnosed with Lupus year & 1/2 ago what is Lupus??

Lupus is an Auto-Immune Disease that is incurable & you have to manage the symptoms as best you body seems to think it is always being invaded by foreign matter & so it attacks itself which causes inflammation/pain & other Diseases.

There are a few different types of Lupus & the one i have attacks the muscles, joints, & major organs & it also raises cholesteral & blood pressure to dangerously high levels.
It has attacked my liver & also the lungs so i now have Liver Disease, severe asthma & allergies to so many things. I get severe inflammation in the intestines which hurts like an absolute bugger!!! 
It inflames joints & muscles thro out my body  .... also it gets in my back which swells and causes spasms.... gets into my shoulder joint but worst seems to be the hand/wrist which i find the hardest as that really stops me doing what i love.

Basically it is a pain in the arse {sometimes that is literal!!!} but as there is stuff all i can do about it i am stuck with managing it as the flare ups come....which is why my work these days is VERY sparodic!!!
I might be fine for a week or two with a level of Lupus that is manageable & only enough discomfort to slow me down but other days/weeks i need alot of sleep as my body is trying to fight a major perceived infection & i come to a complete stop.
This is making Custom Orders harder & harder to do as i never know how long it is going to take me to get even the simplest task done especially as i am getting increased bad bouts in my hand/wrist.
I must say that MANY days/weeks i think i just cant cope anymore & feel like i should just stop work altogether.............then i try to tell myself what will i do when i am not having a flare up???
I am now finding myself in a major quandry about it all as i love what i do & have a passion for trying out even more arts/crafts but it completely SUCKS when i am too exhausted to do anything or feeling fine except my fingers have turned into a painful useless claw.
The stress of the flare ups vs work do make the Lupus what is a girl to do??

Some weeks seem to be worse than others & i am keeping a diary so i can try to establish some more of the triggers that might make it worse. But how do i run an effective business doing what i love if half the time i simply cant do any of it!!! :(
Heck i dont know - maybe in another couple of days the latest bad flare up will be gone & i will feel semi normal again & jump back into work with a passion??!!
Ok at this point is hard to imagine JUMPING back but maybe a lazy stroll back to work hehehe

Ok as u can see i am in a moody place lol.........dang blasted stupid Lupus
Here's to tomorrow.

trace xo
[photo source]


  1. Oh Hon,..that sounds terrible,..... you poor duck,... can diet do anything to improve Lupus? xxxx

  2. i am trying a food diary to see if their is anything that i do/eat that makes it far seems random :(
    It has been in my intestines for last 3 days so i am feeling utterly wretched at the moment & ready to chuck it all in ......swear words go here :P

    thanks for the support J xoxoxox

  3. Gosh that's BAD luck . . . It sounds crap. You are amazing Trace and have to keep going .. . . The diary sounds like a good idea to try and keep some control/perspective over what helps/triggers etc . . ..Are there any good books on the subject, people who have experienced the same thing? Sounds like anything that helps with stress too? Can't imagine what it's like, and look at what you make, better than anyone x x x x

  4. aww REBECCA u just made me cry......... i very much needed to hear that, thanks beautiful xoxoxoxoxo

  5. Trace, even if you can only work sporadically, what you do is so amazing that it would be a crime to deprive the world of your gorgeous creations. Take life one day at a time and live that day for all that it is - those of us that love your stuff are happy to wait til you feel better. K x

  6. oh man i am on a crying binge today!!! K you have made me so happy...was thinking i would have to chuck it all in cause i cant get much done like i used to & who would want my stuff then??
    Bless you all from the bottom of my heart xoxoxox

  7. Dear Trace,, I did not know that you had this illness,, it must be very frustrating.. You are an amazingly talented and generous lady and sweet birdie blue ROCKS...
    Keep on doing what your doing even if you have to stroll xxx

  8. Hi Trace,
    I don't know if you remember me from ebay? I used to sell chenille?? Sorry to hear about your lupus diagnosis, I too was diagnosed with lupus about 6 years ago now. Mine is not quite as severe, I only have the joint issues, but I do have cystic fibrosis as well so know very well what it's like to live with chronic illness. My advice is, do what you can when you can and don't sweat the little stuff. Do what makes you happy and it's quite clear that making stuff makes you happy. If it takes a little longer, then oh well, just enjoy it, when it becomes too much of a chore, let it go. Hope that you can take something from my advice!

    Take care,
    Selina xx

  9. I knew when you disappeared from your old blog something must have been wrong. I love what you make and have always admired your use of fantastic colour and that your blog was all so inspiring and optimistic. Surround yourself with the people and things you love, keep your projects small and achievable and try not to stress. xx

  10. Oh wow Selina {& i sure do remember u mate xo}..a fellow sufferer!!! Thanks so much for the advice ... glad to hear that it can be managed longer term cause at the moment it is in my intestines & i'm really struggling with it.
    But now i feel much better knowing that scaling back wont completely ruin my small business... thank heavens for that!!

    Thank you so much Selina & so glad you coping ok with your Lupus & my dear friend has cystic fibrosis & i see how hard it is for her so i commend your positive outlook - i appreciate so much you sharing & giving me some hope xox

  11. Trace I've only just read this. I didn't realise you had lupus. If it's any consolation I know someone who was diagnosed when she was 8 and now she's at Uni, pre-med as the Americans call it. Even if your work is sporadic, please keep it up because it's so cheerful & nice to see. Chin up my dear & keep smiling even when things are bad; we all feel for you

  12. thanks so much ladies as u have filled my heart when i was feeling beaten down .... big hugs & kisses to you all xoxoxoxoxox

  13.'re back!!! It's Stella from Adelaide. The past 18 months must have been a struggle for you...I didn't know...
    If anything will get you through life, it's your wonderful infectious personality and can-do attitude. I won't forget your cheerfulness and warm welcome when I joined the Etsy Dust team :)
    Just create when you can, and rest when you can't, and don't feel guilty about it. Life's too short. Congratulations on your new line of stuff -looks fab!!!

    Take care,
    always around for a chat...

    Stella xoxoxoxo