losing the energy n will power to fight the battle
At the point of writing this, i am actually sitting on my bed in my hospital room, 3rd night to be exact.
I see theres a lot of saints here trying to help everyone out... And hope i would gain some strength here.
I am 30 yr old female frm Malaysia, where sun exposure avoidance is almost inevitable. Single parent of 2 boys aged, 7 n 9. Have a few pagaent titles under my belt, didnt achieve much academically, but proud to be holding a managerial post of a reknowned vehicle franchisee.
I didnt get to where i amcareer wise today easily, it came wit a lot of hard work n obstacles, plus a rotten marriage, everything just made me a stronger person, not only for myself, but for my boys, my family and my sales team. Everybody looked up to me for wat i achieved n wat i am. I worked hard to be where i am and tripled income in less than 5 years.
I was officially diagnosed with sle a year ago, of which i knew it wascoming along earlier with situations i was unable to get out of bed due to severe joints pain, but resolved to chinese herbs and medications, which worked for a couple of months, but didnt later on. I had alopecia few years back, bad hair loss after pregnancy, numbfingers, colorful fingers toowhichcould turn blue, purple, white :-) raynauds they call it, and wonder why i gobbled water like i was in the desert, why didnt i keep my contact lenses intact, why did mine hurt n was so dry aftershort period.... Supposed to last 8 hours or so.... And let me introduce the SJORGENS symtom.
With all this, i was still ignoring all conditions and went on with lifeas usual - crazily busy trying to conquer everything ahead. It was only when i started developing lesions on my arms which worsens that i could practically see my bones through it. U can imagine the pain i was in, biopsy after biopsy, test after test, the sle was confirmed.
I live my life as though nothing happened, juggling medicAtions,celebrax,aspirin, planequil, predisolone etc... Regular visits to the rheumatologist which i have to take an hour flight to meet, options are near to zero here in term of searching for options or second opinion.
I thought life would be the same, i thought i could still chase my dreams and conquer, i thought i could expand mydays and time like i always did.
This time round, the lesions creeped to my back, wat was only thumb size grew to palm size then hand size. Being one tough nut or cookie, and had tattoo n child birth, u could imagine the pain tolerance level, which still i have to submit to in tears.
Though independant in many ways,my boys are cared for by my wonderful parents, they are somewhat comfortable running business of their own, with financial n time freedom.
I m in dilemma. My parents are asking me hold my horses, to stop working, unless the company allows a 2 month rest, in able for me to recuperate. I cant avoid the stress, hassle n the sun in my job, and i have been hiding the sle well, only my family knows. I was concern it would affect mycareer, as i need a sustainable income to putthe boys through college.
My parents have this mind that i would die from sle if i continued my job.
Being under severe medicationsthese few days is not helping either, yes it minimizes mypain, but it ballooned my face so badly n my weight, i dont know where to find the courage to step out or meet people. I am on a sales n marketing job.
How well will my condition improve if i quit my job, is it worth it.
This... Is a difficult confession of a self proclaimed workaholic n super achiever....