Wednesday, January 23, 2013

A patient speaks

This was written by my dear friend May Tucker, who suffers from lupus.  It's a good look inside the mind of a patient.
BALD vs. BALD--My Blood Curls

Foreword: This blog ought to make you laugh with a tinge of worry, but laugh first, by all means!!

Found all my nice hats from about 20 years ago--first time I balded. I marvel at my wisdom and the care that I have taken to keep them boxed up and clean. O, let's not forget that human hair wig!! Summer comes will I don the piece, of course. Winter is the perfect time to lose 70% of my hair--cold and hats go together.

My lupus is raging in spite of the raise of all disease-modifying RXs. My lab studies read like a death sentence. ...
OK, enough grumbling. This flare came out of no where, well, technically it came from my own body. Yet I am wracking my brain as to what could have precipitated this wild orgy of my blood cells--without even informing, let alone asking for my permission to carry on like this.

I was asked if I am depressed yesterday. I asked back, "What is NOT depressed?" I received no answer. The sense of forlornness and extreme concern and fear surpass depression as most with severe lupus patients would understand. No, I am not going to kill myself on purpose BUT, I can't speak intrinsically for my blood chemistry at the moment. I hope you all see the irony.

Some well-intentioned "shrinks", sorry, did I just write shrinks? I guess I mean shrinks. Some of them analyze that auto-immune diseases is the manifestation that the individual DOES NOT like herself on a subconscious level and that's the reason her body goes hog-wild and destroys her in spite of herself. If you are one of these shrinks, I might seriously consider getting a gun and take good care of you! Others friends and family members suggest that we, somehow, are doing something or not doing something to come to this point. Well, as much as a peace advocate, I WILL use that gun. Those friends who tell me that I look great and wish me to get WELL soon--I WILL shrink you myself. I will never be well in the true sense of wellness. I may be stable, at best. Not to forget the well-intentioned self-proclaimed nutritionists and the know-it-alls, please do not tell me to eat 2 pounds of blueberries/whatever a day or I will live in your house and occupy your personal bathroom facilities, indefinitely. Those who cry--STOP it. I mean it. Suck it up--I do. All them "I worry about you's"--you can zip it up as well. You don't know the meaning of worry, trust me. Ones who avoids me after knowing I am sick. You are good--keep avoiding me until you get shrunk. The contradictors, please go to medical school, after you get in, specialize in rheumatology, finish your residency, see patients and research for about 20 years, then come back and I will have tea and biscuits waiting for you.

The friends who want to help in tangible ways: look into my soul via my eyes--do you see the same person as you have always seen in me? If so, let's have a great time in our dialogue--from weather to religion, to election, to family, to cultures, to philosophies, to faith, to love, to peace, to war, to science, to music, to fashion, to money, to God, to Satan, to evolution, to creationism, to books, to movies, to laundry, to house-keeping, to bargain-hunting, to money-making tips, to money-saving tips, to trip-planning, to gardening, to personal affairs, to tombstone epitaphs, to church, to gossip, to vanity, to shopping online, to shopping off line, to old friends, to Facebook, to Youtubing, to children, to siblings, to relatives, to parents, to fights, to laughter, to everything, and of course, to hair-styles. By being a true friend, you have just lightened the load immensely. Please try to be this kind of friends to all people who suffer alone and often in silence as our world does not validate invisible illnesses.

My blood curls just a bit when I think all the hassle I might wreck upon my immediate family if I were to depart. So for that reason alone, I shall try to be merciful to my husband, my sons and my brothers. I will stick around and blog! And you had better read it and respond, as true friends do. Shalom.

P.S. I am certainly preaching to the choir if you have read thus far!!! Hahahaha!

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