Itching, Madness, and True Love (A Lupus Story in Disguise)



4:00 a.m.  – A lupus story because its about my severe allergic reaction to a lupus drug, said reaction being amplified  because the lupus has joined  with the evil allergy forces to destroy the effects of a drug intended to help me.

This has been the most miserable week of my life-..i have not been able to do anything  but lie in bed with ice packs on me to relieve the itching – every itch  inch of my body- I wake up every 1.5 hours bz of the itch – i’m on steroids and antihistamines- my face is puffed up into a balloon – my ankle is just fractured but still a pain the in ass, i have to wear a brace with sneakers- i only stayed in the hospital overnight because the doctors said they really couldn’t do anymore for me and it would take 2-3 weeks to clear up! they warned that the rash would get worse before getting better, but they did NOT warn that the itch would apparently do the same – it feels like tiny little ants crawling around beneath the surface of my skin, occasionally nibbling at my blood vessels -so at 8 am this morning Alph and i will be parked on the dermatologist’s doorstep, the doctor who saw me in the hospital, for a re-evaluation – no appointment, just begging and if that doesn’t work demanding to be seen.

Alph has been wonderful through all this. Poor man. We have a health crisis every year. Truly. But this was the firat time he had to call 911 for me.  I was commiserating with how awful that must have been to hear me fall to the floor and then come running in to find me unconscious , staring blankly up at him as he tried to rouse me. He replied  in his best John Wayne voice, but seriously, “A man does what he has to do.”   For you kids too young to have ever heard of John Wayne, he was a tough guy movie cowboy, but a gentleman on the inside with a heart of gold.

He has never left my side. John Wayne bringing tea and cookies and pasta and comfort food   and infinite patience..all with the swagger of his youth.  Always making me feel nurtured and protected, even from a barrage of disease bullets. God  I love this man.

1:00 pm – Well what’s wrong with me other than the madness factor that I expected to be refused to be seen? The office staff was very nice and so was the doctor, who none-the-less said he couldn’t do anything for me. It will take another week and a half to slowly improve and I’ve gotta gut it out.  Oh, and the ice packs I’ve been doing have made the symptoms worse due to a rebound effect.

The worst part of it all, the absolute worst, was that Alph was in the examining room and I had to put a gown on and I felt so objectified, ugly, helpless, and embarrassed in front of my own husband when the doctor needed me to stand and take it down so he could see what was going on.

Why should I care, you ask?

Would you want your Hero Prince Charming to get a fast forward of your naked self under flourecent lights, which everyone knows age a woman’s body by about 20 years in the best of circumstances? Red spots bursting out of the pink blotches on your already sagging, steroid water weight skin? What if he was traumatized by the sight? What if….you know….?

How cool that after 20 years I still feel this way about him…

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7 Responses to “Itching, Madness, and True Love (A Lupus Story in Disguise)”

  1. viv66 Says:

    Bless you, I’ve long come to the conclusion that when a person truly loves another, they develop dual vision: that is to say, the ability to see what you’re like today(warts, rashes, flab and all; I mean me here btw) and at the very self same time, see you at your very best(think wedding day, or similarly lovely day)
    My husband today has a magnificent black eye, the result of failing to block an opponent at Kung Fu last Thursday; to me it only enhances him…

    I know exactly what you mean Viv..but then, we do have an amazing understanding of each other, don’t we? 🙂

  2. tobeme Says:

    Sounds like a horrible time! Thank goodness you had the Duke there to help you through it all. I understand what you are saying about disrobing in the doctors office. Everyone should care so much!

    Thanks tobeme, for the support and reading through all that!

  3. viv66 Says:

    When kindred souls meet, whether face to face or through an anonymous medium like the internet, it’s still an amazing thing.
    My husband and I have unconsciously written each other into our childhoods(we did the same things, fell out of the same trees etc but half the country away from each other) and find it hard to remember that it wasn’t until we were 18 that we actually met! In August we’ll have been married 22 years.
    Have you read Khalil Gibran’s The Prophet? When he writes of love, he says, “You were born together,” and since this book is a part of my husband’s wedding sermon, couples often nod vigorously at this point. I often wonder if the ones who don’t get what this means actually stay together….

    Viv this is so beautiful. Have you written this into a story?

  4. vanessaleighsblog Says:

    ANd how cool that he is still there with you, every step of the way…..

    That is true love, my friend. I am so glad that you have him during these trying moments………

    Hang in there, my dear friend. Hang in there……

    I know…and that you are still there no matter what for YOUR partner…hugs, p.

  5. viv66 Says:

    Not yet, but maybe one day!
    Hope things will improve for you soon; I am praying for you…

    thx v

  6. J Says:

    I can’t even begin to imagine what you must be going through right now and I wish I had a way of taking away your pain.

    How cool that after 20 years he still fels this way about you also!

    I feel reassured that he is there to look after you and help you through this.

    With love and the warmest wishes of a speedy recovery..

    Thank you so very much, J.

  7. San Says:

    *hugs* to both of you, glad you are pulling through!

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