After I was discharged from the hospital comes a lot of almost bi-monthly visit to the Rheumatology doctor, new other symptoms and other kinds of diseases accompanied my Lupus. Medicines to take care of the symptoms; medicines to take care of the side effect of the main medicine used for my symptoms.
Well, I can't really do anything about it really, just need to swallow the pills, drink my water and move on with life, anticipating the next time I need to drink medicine. Which is usually after 8 or 12 hours.
Life with lupus can be tiresome, devastating to some, but it is definitely life changing to all inflicted by it. It is hard at first, you go through all the stages of grief.
Grief doesn't only imply to the loss of a loved one, in my case, it is a loss of good health. We must recognize that we all are grieving, once recognized, I know we will all be level-headed, and will move on in bettering ourselves.
Systemic Lupus Erythematosus or SLE is the most common lupus. The type that affects every single organ of the body.
I had the textbook SLE, Lupus, from the very beginning. I had the malar rash or butterfly rash to some. And the accompanying joint pains that is experienced by more than half of the people with lupus. I actually have a tell-tale spot, that when it hurts, it means I need to increase Prednisone just for that one day, or at the minimum, drink a pain reliever. When my right heel hurts, I am about to have a flare. That is my tell-tale spot.
I think people with lupus should listen more to their body, and notice the differences that happen before a flare up. I have one, my right heel pain, maybe you have one too!
I am actually really lucky to have the most common symptoms of Lupus. They were able to diagnose me easy, and not like other people who had to wait and some wait for months or even years just to find out they have lupus and not some other disease their doctor was treating them for before. Even with this, it is still not easy to deal with lupus. The most annoying part with Lupus, in my case, is when one thing is better, another messes up. This is the summation of my 4 years diagnosed with lupus.
SLE positive diagnosis -- labs are good -- lab found protein in urine -- c4 almost at normal, kidneys not so much -- admitted to hospital for feeling sick -- kidney biopsy -- LUPUS NEPHRITIS 5 -- kidney doing good -- PULMONARY EMBOLISM (1 day before my birthday on 2013) -- Kidney doing better -- managed kidney a lot better -- DIABETES (because of weight gain and being on prednisone for years)
References:
Definition of SLE: https://www.nlm.nih.gov/medlineplus/ency/article/000435.htm
Definition of Malar rash: https://en.wikipedia.org/wiki/Malar_rash
Malar Rash photo: http://www.cbsnews.com/pictures/what-your-looks-say-about-your-health/10/
Definition of Lupus Nephritis: http://www.webmd.com/lupus/lupus-nephritis
Definition of Pulmonary Embolism: http://www.mayoclinic.org/diseases-conditions/pulmonary-embolism/basics/definition/con-20022849
Definition of Diabetes: http://www.mayoclinic.org/diseases-conditions/type-2-diabetes/basics/definition/con-20031902
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