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. Let's start with DNA-antibody production: 87???? Really, I must be making antibodies to kill off all my collagen, fingernails are brittle, hair so fine and burnt-looking and has decided to relocate onto my pillows, floor, brush and other surfaces. And this is on the outside, what's happening with the collagen on the inside? Horrid!!
Now, sedimentation rate is in the three digits. Complement 3 & 4 are nearly low enough to touch the floor. White cells--all the break-down of my precious white cell menu--where art thou? Not on my blood cell menu?
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.
So, is my hair important to me? I guess so. The question is redundant, of course. Yet the more serious issue is "will I overcome this flare to enjoy new hair?" This severe flare leaves me with some cheeky, yet profound and thought-provoking circumstances and questions to ponder.
1. Protein in the urine means kidney involvement. Am I ready to cope with kidney failure? Will my body make it this time?
2. Whacked out potassium, sodium, chloride levels are harming to my heart-am I going to flat-line again?
3. Avascular necrosis in both knees and higher dosages of steroids---now that's a formula for an opportunity to contribute to the orthpod's pocket.
4. Do I continue my life as is or stop doing everything? And what good is that?
5. Will my hair grow back this time?
6. Tired? Why it is my first name on 3 hours a night of sleep--Prednisone at bedtime can do that. Three hours actually is good.
7. Do I have all my affairs in order?
8. I hate the thought of the probability of multi-organ lupus!
9. I am just getting started to live for myself--now I am whining!
10. My body chemistry is not balancing the equation! Darn! I dislike "my" messing up with my own body. So self-love has dipped….and self-acceptance--Hahaha--has left for the Arctic in October!
A typical work day:
- Wake up, get a huge paper towel, starting fingering through my hair. Strands and strands are awaiting to be gleaned and wrapped up in paper towel . Repeat in another hour. Each harvest: about 300-500 hairs.
- My wonderful pharmacy awaits!!
- Shower and dress. Takes twice as long--joints are inflamed and achy all over. Hot water in shower really helps
- Water drinking commends--in large quantity through out the day
- Act like nothing is wrong in front to students, colleagues, choir members, congregation and of course, my Facebook friends.
- Retreat to reading and studying--usually online.
- Eat, may be
- Work on work details via emails and general writing. Music selections and study some more along with practice on piano and voice
- Eat, may be. I never feel hungry anymore.
- Check on Facebook to see how many people read my stuff--90% of the time disappointed because people just post "I am at/I am doing/zillions of game apps/their cats/their dogs/their horses/political rants/memes/memes/memes/and more memes.……
- Night meal with another dance with my pharmacy, this time the dance involves about 50 or so little, swallowable, odd-shaped, tiny objects in different shapes and sizes. They dance all the way to my stomach.
- Sleep, may be
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 avoid 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 son 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!
May, I have never known what people thought deep down when an invisible illness was dominating and invading their lives. Suffice it to say, your blog will be read from pillar to post, so to speak. My best talk is fabric, so please contact me about that if and when the need arises. My comments on TA have always been few and far between, so please understand when I merely read and absorb there.
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Peggy, right on to fabrics. I have not had the time to get started yet!!! But I will come to you for advice, rest assured!!
DeleteDear May, thank you for your transparency! I love you for that, and for putting into words what you are going through. As for hats, I love them! They cover up a bad hairdo or no hair equally well. I've heard wigs scratch bald heads. I've never had that, but they are hot on a head of hair--those going through the 70s know that all too well. We remember you in our thoughts and prayers. It was SO enjoyable, while Heather was here, catching up for YEARS of being apart! I frequent fb less and less often, so please understand if I don't get off your updates here. I <3 U! Jan<><
ReplyDeleteThanks. Jan--Great to see Heather--a happy Heather to boot!!
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