Archive for the ‘coping’ Category

Lupus causing extended suffering

May 12, 2009

My previous post was tongue in cheek…but now, this is living hell…the constant itching is actually painful…dr has increased my antihistamine to the point that it knocks me out…when i wake up there is a 1 hour window (now) before i can take my next dose…i have to choose what feels like induced coma, or suffering…the lupus is making me suffer, exacerbating and extending the allergic reaction

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

May 11, 2009

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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…

Lupus Awareness Month – The Five Stages of Lupus

May 9, 2009

 

Sung by Avril Lavign

You’re not alone
Together we stand
I’ll be by your side
You know I’ll take your hand
When it gets cold
And it feels like the end
There’s no place to go
You know I won’t give in
no I won’t give in

Keep holdin’ on
‘Cause you know we’ll make it through
We’ll make it through
Just, stay strong
‘Cause you know I’m here for you
I’m here for you
There’s nothing you can say (nothin’ you can say)
Nothing you can do (nothin’ you can do)
there’s no other way when it comes to the truth
So, keep holding on
‘Cause you know we’ll make it through
We’ll make it through

So far away
I wish you were here
Before it’s too late
This could all disappear
Before the doors close
And it comes to an end
With you by my side
I will fight and defend (ah ah)
I’ll fight and defend (ah ah) yeah yeah

Keep holdin’ on
‘Cause you know we’ll make it through
We’ll make it through
Just, stay strong
‘Cause you know I’m here for you
I’m here for you
There’s nothing you can say
Nothing you can say
Nothing you can do
nothing you can do
There’s no other way when it comes to the truth
So, keep holding on
‘Cause you know we’ll make it through
[Keep Holding On lyrics on http://www.metrolyrics.com%5D

We’ll make it through

Hear me when I say
When I say I believe
Nothing’s gonna change
Nothing’s gonna destiny
Whatever’s meant to be
Will work out perfectly
Yeah, yeah, yeah, yeah….

La da da da, la da da da da
La da da da da da da da da

Keep holdin’ on
‘Cause you know we’ll make it through
We’ll make it through
Just stay strong
‘Cause you know I’m here for you
I’m here for you
There’s nothing you can say
nothing you can say
Nothing you can do
nothing you can do
There’s no other way when it comes to the truth
So, keep holding on
‘Cause you know we’ll make it through
We’ll make it through

Ahh, ahh
Ahh, ahh
Keep holdin’ on
Ahh, ahh
Ahh, ahh
Keep holdin’ on
There’s nothing you could say
Nothing you could say
nothin you could do
nothing you could do
There’s no other way when it comes to the truth
So, keep holding on
‘Cause you know we’ll make it through
We’ll make it through

Do You Know What Lupus Is?

May 8, 2009

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You  should… It can kill you or a loved one.

May is Lupus Awareness Month. Click here to find out what you should know… And here.

Autoimmune Disorder, Allergic Reaction, Help Please!!!

May 7, 2009

 

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First, this picture is not me. I found it on google images. I WISH i looked this good…

Not good, people. Not good. I was given the drug Plaquenil to  add to my autoimmune disorder arsenal by my doctor a few weeks ago with the goal of weaning me off the prednisone.   I am now covered in a rash from hell over 75 percent of my body. EVERYWHERE  you can think of and don’t WANT to think of.  And the non specific lupus type disorder I have is gleefully helping the reaction to reach its fullest potential.

Long story short, the morning that my slowly developing rash blew into a full blown stage 3-4 allergic reaction, I also fainted and broke my ankle. So I spent the day in the ER, and was admitted. They were more worried about the fainting in case it signified something serious. It didn’t. AFter mega dollars in testing the fainting was attributed to an episode of low blood pressure.

I look like a monster. I feel like a monster. I have red, elephant ears. You can barely see any skin beneath the eruptions. My face is masked with them…Does anyone have any recommendations for excriating itching? I”m taking steroids and antihistamine but topically nothing is offering much relief except ice packs. Oatmeal bath – so so.. Coritsone cream the same…. wahhhhhh!!!!  😦

Psychscribe Quote #57

March 27, 2009

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“If you watch how nature deals with adversity, continually renewing itself, you can’t help but learn”  Bernie Siegel

A Comforting Ancient Story

March 25, 2009

My dear friend SanityFound sent me this ancient story to comfort and fortify me about my upcoming visit to my dying uncle. It did indeed comfort me, and it resonated with truth. I hope it helps some other reader here:

In ancient times it was believed that when someone gets an illness, someone who doesn’t die suddenly, it is God giving those that passed on a chance to be with those who visit the the ones soon to pass.  In ancient times those who loved the one who was ill would visit them, staying a while at their bedside with their eyes closed, just breathing and feeling. They said it comforted them feeling those gone already surrounding their loved one.

 God brings the angels who know the one soon passing so that they do not fear, and to give comfort to those visiting.

God in Action

January 31, 2009

fork-in-the-roadIn addition to the blues I’ve been experiencing lately, I also am feeling physically worse as I’ve been tapering down my prednisone. So though I did go to work yesterday, I had cancelled my attendance at bible study at my sister’s because I knew that by the time I got home at around 8 pm all I’d want to do is crawl into bed. There was no way I was up to going.

But Got had other plans for me. I was almost home after sitting for an extra hour in traffic, when I heard something in a novel I was listening to in the car.  I identified with the character, who was having a badly needed spiritual experience, and suddenly felt a powerful longing to feel the presence of God.

My sister and I live very close to each other.  There is a fork in the road in which her house is in one direction and mine in the other. As soon as I felt that longing for God, I no longer noticed my aches and pains and  without hesitation called my husband to tell him I was going to bible study after all, and called my sister to say I would be there any minute. I was right at that fork.

When I arrived my sister was radiant. She had been praying, literally, “Lord, when my sister reaches that fork in the road, please help her to feel better, and make her turn left toward my house  tonight.”

I don’t know why God wanted me there so much, but I do know that the chances of this being a coincidence were statistically ridiculous.  And  I did get to feel the presence of God and the Holy Spirit last night, we all did.  It happened when a tormented client I have suddenly came to mind, and we prayed with all our hearts for a psychological and spiritual healing for her.

God works in strange ways.

Constructive Criticism

January 22, 2009

peanuts-higher-criticismYou know you’ve been hit when you feel  stung, shot right between the eyes, express hurt, and the shooter retorts: “What’s the matter? I was just giving you a little constructive criticism!” This is their defense posture because now they’re feeling criticized by your reaction to their criticism.  It’s supposed to mean they were  “only trying to help you”.  

In the first place, if you’d wanted their opinion you would have asked for it. These people have never learned the old saying, “If you can’t say something nice, don’t say anything at all.”  Worse yet, these are often the very same people who once taught us this very thing, but they think that because they’re our parents they somehow have an exemption.

Criticism is the expression of disapproval of someone based on perceived faults in them or their behavior. So constructive criticism is an oxymoron.

Destructive Criticism :

That haircut makes your face look chubby, dear.

Didn’t anyone ever teach you not to make disgusting noises when you eat, sweetheart?

Have you noticed that your gut is beginning to hang over your belt?

Honey, no offense but you sing like a baboon.

When are you going to learn that not everyone is interested in your long, boring stories? 

You really over indulge that child.

You’d better stop feeding her so much or she’s going to turn into a whale.

When I raised my son he got his underwear ironed.

Why are you wearing so much makeup? Did they have a sale down at Macy’s?

Most of us have been victims of such remarks at one time or another.  But you don’t have to stay a victim. You can have an a ready response in your arsenal should a shooter appear disguised as a friend or loved one.

The obvious one that I started with was “If I wanted your opinion I would have asked for it.”   But that doesn’t fit everyone’s personality style. Others might include:

“Thank you for your kind, gentle, and  sincere help.”

“You can withdraw your fangs now, I get the message.”

“I have a headache tonight. And I’ll have one tomorrow night too.”

“You’re beginning to sound just like my mother.”

You get the idea. Disclaimer: I’m not talking healthy communication responses here.  I’m talking good old fashioned getting even. Because once in a while, lets be honest here, it just feels good to take a shot at the shooter.

Psychscribe Quote #52

January 18, 2009

 

 

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“Nothing worth knowing can be taught”  Oscar Wilde


Words on Women & Strength

January 9, 2009

Psychscribe Quote # 48

December 16, 2008

 

Image from www.globalcollage.com

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“Life isn’t about how to survive the storm, but how to dance in the rain.” Author unknown.

Psychscribe Quote # 47

December 11, 2008

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” One approaches the journey’s end. But the end is a goal, not a catastrophe. ” George Sand

Mental Health Day: True Confession

December 4, 2008

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I’m taking one today. I mean, everyone else gets them. Why shouldn’t I? Even shrinks need mental health days once in a while. I need to relax and not HAVE to get in my car and go anywhere, be anywhere. No pressure…Mmmm…..

So lets see….I think I will dust today since I have an allergy to the stuff and its a real pain to walk around choking all the time….and do more Christmas shopping ONLINE (I don’t do malls anymore)..and finalize my choice of photos from the wedding for my “parent album”…oh…and i guess it would be a good idea to search again for my very expensive, lost wedding rings, I know they’re in this house someplace…and i need to get started on the jewelry I’m making for Christmas gifts….and call my mother which is never, ever less than a one hour conversation (that’s another whole post  in itself)…and I have several, repeat SEVERAL baskets of ironing that I’ve been avoiding like the bubonic plague…and for that matter there’s probably at least the same amount of  wash to be done…

Ok, so this is not what I’d advise a client to do on a mental health day. I would suggest to a client that she do something fun, relaxing, no chores allowed! But then again, for some people, getting chores done on a day when they would be going to work  is good for their mental health because all that stuff is no longer waiting for them…hovering.stalking them…

I guess I should call this my housework health day.

Tell us the truth. What do YOU do on your mental health days?

Cross

November 25, 2008

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When Alpha Males Get Sick

November 23, 2008

hallsbalsamLord help me. He only gets sick once a year, but when he does my hero turns into my worst nightmare.  I truly appreciate that he patiently takes care of me all the rest of the year above and beyond the call of duty, with my lupus and all, but BOY…paybacks are a bitch! He won’t let me take care of him… he wants me to take care of him…. he doesn’t need help…he does need help. I am trying not to get too close physically so I don’t catch his germs. He finds this to be insulting. When I tell him  that I miss his hugs, he looks accusingly at me like its all my fault. I’m also supposed to be a mindreader. When I ask him if he’s hungry, he’s not. Five minutes later I find him cooking himself some soup and sneezing into it. Mmmm….yummy…He then graciously offers me some, which I graciously decline.. And, worst of all, he’s a VERY cranky patient who isn’t a patient.

And just so you know, Alpha Males don’t marry Florence Nightingales. Truthfully, I HATE being a nurse. 

I hope I don’t get sick for Thanksgiving 😦

Parable of Two Wolves

November 13, 2008



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An elderly Cherokee was teaching his grandchildren about life. 

He said to them, “A fight is going on inside me, it is a terrible fight and it is between two wolves.” One wolf is evil………..he is fear, anger, envy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, false pride, competition, superiority, and ego. 

The other is good……… he is joy, peace, love, hope, sharing, serenity, humility, kindness, benevolence, friendship, empathy, generosity, truth, compassion and faith. This same fight is going on inside you, and inside every other person, too.” 

They thought about it for a minute and then one child asked his grandfather, “Which wolf will win?” 

The old Cherokee simply replied, “The one you feed.” 

When A Spouse Comes Out

November 5, 2008

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I found an interesting column by Garry Cooper  in this month’s Psychotherapy Networker.  

He reports that  Amity Pierce Buxton, founder of The Straight Spouse Network, estimates that as many as two million straight spouses will, often suddenly, traumatically,  and by accident, find themselves discovering that they have a gay or bi spouse. The article also reports that Joe Kort, an Imago therapist specializing in gay issues, has seen couples negotiate arrangements other than splitting.  Some agreed upon solutions have been allowing one or both parters to have relationships outside the marriage, allowing the bi/ gay partner to use porn and webcams but not meet sexual partners face to face, or the bi/gay partner agrees not to indulge in outside sexual behaviors or porn.

What a tough and painful situation for everyone involved…particularly where there are children…or the spouses still love each other…  What would you do?

Being Thankful for Chronic Illness

November 4, 2008

I am rushing off to work right now, so thankful to be in remission these last few weeks. But I read an essay called Being Thankful at But You Don’t Look Sick  which I’d really like to share.  Enjoy your day.

The Present for You

October 17, 2008

 

Here is a present for you:

Focus solely on the present below, thinking of nothing else but the image of that present…the colors….the shapes…focus for as long as you can…and then, when you’re ready, open the present and see what you find…

 

 

In  doing this exercise you are already practicing being present…experiencing peace and release from worries about tomorrow.

What did you find when you opened your present?

Staying Present- A Life Lesson

October 14, 2008

Copyright Jupiter Images 2008

“Look not back in anger nor ahead in fear, but think of now with awareness.” Author Unknown 

I chose this quote for my high school yearbook. I have no idea how it surfaced through the years to my conscious memory, but wow!  That 18 year old girl must have had some precognition that the quoted lesson  would be one I so needed to eventually learn (and teach my future clients).

 And learning it I am. Even more aware of the beauty of nature than I’ve been all my life (if thats posssible),seeing it, smelling it, feeling it on my skin,  melding with it, morphing with it, feeling it in every inch of my body and soul. Its a beautiful autumn here in the northeast…

How long are YOU able to stay in the present moment? Have you thought about that? Have you thought about the fact that when you are TRULY in the present moment you can’t worry or feel anxious because that’s about the future? Are you letting the simple joys of the present moment slip away into tomorrows that may never come?

What are your favorite ways of staying present? Staying in the present is a present you give to yourself.

5 Years From Now Will This Matter?

October 11, 2008

That’s all I have to say regarding whatever you’re so anxious about today…

 

Knowledge is Power

September 30, 2008

I liked this article about being an empowered patient in today’s New York Times. Its nice to know that times are changing, where the “good patient” is not necessarily the passive, compliant one

 

 

Psychscribe Quote #39

July 27, 2008

Perhaps we are like race horses – one of the old traditions was to ‘handicap’ the greatest horses so that they would not run away from the pack. They would pile on lead weights, whatever was needed to get up to the amount of weight the handicapper said they should carry. We’re handicapped because otherwise the world could not keep up with us.” Anonymous

Abuse & Disease: A New Spin

July 1, 2008

Chronic illness feels like an abusive relationship. I should know, I was in one. 

I only just made this analogy  yesterday. A friend was talking about a controlling relationship which her daughter, M.,  is stuck with until M.’s child turns 18. Every time she gets thru one crisis with the father of her child, who feeds on her angst like a shark feeds on a flailing, tasty human, calm returns and for a while she feels some semblance of normalcy.  

She goes on living as if no further emotional assault will occur, and is truly re-traumatized each and every time.  How could this be happening again????…..the raging powerlessness I know she feels as he uses their child as a pawn between them, a pawn in a game she cannot win.

She will not use Solomon’s sword. He would.

Jump back to me, stuck in bed again with my lupus flare. Like it or not, stuck with it. My body, my life, my work, my marriage,  my family –  all affected by this nasty disease. Assaulted by it.  And I feel powerless, and furious…. so furious….  a  raging powerlessness in a fight I cannot win. A fight which will probably kill me. An abusive relationship doesn’t get much worse than that.

And then I feel better again, a semblance of normalcy is restored (key word semblance) , until the next assault by the disease.  At which point I feel shocked and traumatized that the flare has flattened me again.  Just like M. feels. 

There’s nothing we can do about it, right? 

Wrong, actually. I heard myself advising M.’s mom that M. needs to accept that it is what it is. He will never change. His tactics will never change. I would imagine any boxer would tell you its the punch they didn’t see coming that knocked them out.  So…umm…when are M. and I going to admit to ourselves that she had a child with a power and control freak, and I have a very serious medical condition which does not go away just because I get remissions? 

What we both need to do is to see it coming, know its coming, but accept the breaks in between with  the grace,  joy and  wisdom to appreciate the present.  When you know its coming you can have a back up plan. For her it might be disengaging from his game and gathering  the support she needs. Not to detail her victimization but to go out with her friends for a good time,  or treat herself to a day at the spa. It won’t change a blessed thing about the situation, but regardless of whether she suffers or pampers herself while he does his thing- nothing else will change. So since it is what it is, I vote for pampering at such times. Nurturing herself rather than berate herself because she can’t win.

So, as is often the case, in giving my friend advice I gave it to myself. I stopped fighting this flare today and accepted the reality that I need to take a week off from work even though  I HATE canceling clients. I decided to take advantage of the abusive (insert your favorite curse word here) lupus and treat myself. I mean, just because I can’t go to work doesn’t mean I can’t work on my hobbies which I never have enough time for.  I can decoupage, make jewelry, plan craft projects, read, watch movies, all from the comfort of my nice snuggy bed.  It won’t change anything, but…to tell you the truth… I am actually looking forward to my week off now… 

It is what it is.  😉