You're not alone my friend. I'm trying to hold a family together with just my disability income with a hubby that can't work yet can't get through the disability progress, a 12yo child in school, and myself, disabled with blindness, lupus (SLE type - worst type to have), and Sjogren's disease along with all the problems the latter two bring into the picture and it's a lot.
Take a gander at a day with lupus, although our days differ as I am no longer able to work and I am on a much larger and stronger dosage of medication to remain comfortable as possible... the pain can be brought down to tolerable but it's never truly gone; however, on the other end of the spectrum when the pain is bad - it's emergency room or blow my brains out bad.
The Spoon Theory
ButYouDontLookSick.com
It only takes one time to overdo it or once catching a cold or as recently occurred, catching the regular flu then coming down with the H1N1 flu, which lead to an upper respiratory infection to put me flat on my backside and in a world of hurt. I'm still getting over the H1N1. I'm even more uncomfortable now b/c I haven't been able to take my HRT medication (controls hot flashes, chills, and irritability, etc... thanks to menopause, which like the women in my family I entered peri then full-blown menopause early and now thanks to a cyst that has a probability of being cancerous but I won't know anything until more tests are run (another mammogram & ultrasound) in Dec/Jan & there's no guarantees that will tell more than we know so far & could have me waiting another 6 mos for more tests before anyone knows if the cyst in my breast is cancerous or not. The estrogen in the HRT drugs cause cancer to grow faster so I can't take any of the medications to control the symptoms of menopause or I risk the cyst growing and possibly spreading beyond a manageable state where doctors can remove it through surgery and/or with the assistance of chemo or radiation therapy, which I dread like the plague b/c I have a severe phobia of throwing up. It's ironic b/c most of the meds I take for lupus cause nausea and vomiting. I happen to live in a state that doesn't recognize medical ......... and I have no way to gain access to the herb or I'd be using it now to handle the lupus flares and illnesses when taking the meds. Other lupus patients in states w/ medical ......... agreements proclaim this is a wonder drug. They can take their meds without tossing them back up, they feel better, they can eat w/o getting sick, and most of all, they can have a life b/c the herb helps with the fatigue!
When they say misery loves company, sweetie, you're not alone. I'm there with you.
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