Archive for the ‘Lupus’ Category

There’s More to Lupus Than You Know

May 15, 2009

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…

Personal Stories of Lupus

May 10, 2009

Its Mother’s Day here in the USA.  I’m a mother home very sick with a lupus complicated drug reaction.  Since this is Lupus Awareness Month, I hope to blog  something every day about lupus in order to increase awareness. If you want to help me, please share the info and links on your blogs. If you are a woman, or love someone who is, you really  need to know more about the effects of this devastating disease:

Personal Stories of Lupus

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

©www.clipart.com 2008

 

“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.

Doctor Knows Best

March 2, 2009

I Have “mild lupus IF AT ALL????”

February 17, 2009

I am stymied… I had to get a new rheumatologist (Harvard and Yale educated) for my lupus because I moved two hours from my former doctor of four years. I went to a new one very highly recommended by a dear, very intelligent friend  who is a doctor.

When I went to see him he had all my records, which he read,  but said he wanted to do his own work up  “to see if you even have lupus”. This meant a blood draw of 12 vials and a referral to a neurologist and pulmonologist. I was to call him after the blood work came in. 

I called in yesterday for the results.  The nurse checked w/him on the blood work and the reply was that the only thing of concern was my cholesterol which is off the charts and to speak to my primary about medication.
So that was IT..like the discussion was over..so i said…well, what about the lupus and a treatment plan for it and the prednisone, meds, etc?

So she went  off for quite some time to ask him  and came back and said  “the dr. said there were very minor changes and that you have very mild lupus, if that.” So I said well what about all this pain? And she replied, “Well I don’t know but that’s very good news. You know I think he just doesn’t want to say you don’t have it outright yet at this point. He wants you to decrease your prednisone from 15 mg to 10.”  Then he wants me to come in and discuss things once I see the neurologist and the pulmonologist!!!!

I know I should be happy  but.. then what IS all this weakness and pain and flares when I get an infection????????????  And what caused my stroke if I have a mild case of lupus?  

I read my previous doctor’s records which indicated I was an atypical case and had not responded to lupus medications. We had always discussed this fact. But he had never said what I found in the record, this hypothesis  that it was possibly somatization – that DREAD word meaning psychologically based symptoms-  but that he rejected that because of the history of  stroke.

So now I’m afraid I have the “hysterical woman” label even though I have these terrible symptoms and history…. Or, maybe I have something else even worse…

Your  objective thoughts.. please?

Make New Friends But…

February 12, 2009

 

 

 

 

“Make new friends but keep the old. One is silver and the other is gold.”  

I’m finding I don’t agree with that old saying.  Some of my old friends have disappointed me terribly in regard to my health issues. No support at all.  Not even polite questions about how I’m doing.  If I mention I’ve been having a hard time, they respond as if I mention the weather has really been getting to me. Yet my blog friends are here for me all the time, express genuine concern, and check in with me to see if I’m OK when I’ve been quiet for a while. 

So for me, new friends are the gold ones. Thank you, each and every one of you.

1.5 – 2 million Americans have a form of lupus

February 7, 2009

Do you even know what lupus is ? You should. It can kill you or a loved one. 

Loss: Feeling the Pain

January 28, 2009

I wrote in my  previous post, Final Words, about needing to feel the pain of loss in order to move on….well today I am feeling a loss I can’t identify…related to the present…. I know I feel it because I feel so sad, and I can feel the sadness in my chest….heavy….solid…I notice I’ve been feeling kind of angry at my body lately, how it has failed me by turning on itself and using our autoimmune system to attack it, and me. I look in the mirror and want to yell at it….WHY DID YOU DO THIS TO ME????? The research talks all about genetic markers, but I know that psychologically we can unconsciously do bad things to our bodies. I ask myself, what am I punishing myself for? Then I think maybe its not punishment, but fear causing all this in me. Fear of things I still haven’t worked through.  I also realize that at this time 25 years ago my father was dying. He died on February 5, 1984. I always get depressed at this time of year. Maybe this is all connected…I don’t know….

When I finish this post I will go to prepare for my bible study Friday night. I know that the Lord will comfort me as I read. So I have hope.

Protected: Final Words

January 24, 2009

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Stroke Signs

January 20, 2009

brain-stroke

If this can save ANYONE, ANYWHERE, I will be so happy….

Most people know the main signs of a stroke:

  • Sudden numbness or weakness of the face, arm or leg, especially on one side of the body
  • Sudden confusion, trouble speaking or understanding
  • Sudden trouble seeing in one or both eyes
  • Sudden trouble walking, dizziness, loss of balance or coordination
  • Sudden, severe headache with no known cause

But these are not so well known, and are routinely used in the emergency room.  They were used with me when I stroked. I actually check myself with these when I am having fears of another one:

1. Ask the person to raise both arms

2. Smile and show their teeth

3. Ask them a question that requires a coherent sentence for an answer

4. Ask them to stick out their tongue (it should come straight out).

If ANY of these are even questionable, rush the person to the hospital. If they arrive within 3 hours of the onset of a stroke, there is a drug that can completely reverse its effects.

For more information go to the American Stroke Association.

Lupus, UTI’s, & the 30% Club

January 17, 2009

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I wrote in a previous post that I am one of the 30% of lupus patients who have an increased frequency of UTI’s…like, VERY increased. And painful.  The only treatment plan my urologist has is for me to take low doses of macrodantin every day, indefinitely..then increase the dosage when I am actively infected…I’m wondering if anyone else is in the 30% club, and what your treatment plan is? Hopefully yours….

Lupus Rant

January 14, 2009

I know there are people who have it far worse than me. I appreciate that. But this morning I am feeling just so oppressed by the demands of my disease. I just spent an hour of my life, which I do weekly, filling my pill dispensers. In a few minutes, like it or not, I have to drive 45 minutes away to see my urologist, because I am one of the 30% of lupus patients who has a higher incidence of bladder infections than the regular population.  I am on high doses of prednisone again which make me hungry and fat. Meanwhile I’m trying to live a normal life, continue my professional career, and maintain my relationships with friends and family. Not to mention my sex life. I know I am not saying anything different than anyone else does when they feel the need to bitch about their chronic illness, but this morning its my turn. Lucky you I have to stop now, or I’ll be late for my doctor’s appointment!

Lupus vs Fibromyalgia Symptoms?

December 28, 2008

You know, from what I’ve read, there is much similarity in symptoms of lupus and fibro flares.  I’ve been diagnosed with both, so I find it confusing to know which is which when I’m flaring. My doctor, quite honestly and to his integrity, I might add, also finds it to be confusing.

Would you mind  identifying your diagnosis and symptoms? I will then compile them and make a front page, unifying post out of your comments. Then you, me, and everyone else who suffers from these diseases can benefit from your input.

Thank you.

Would You Want to Know Your Therapist Has Lupus?

December 21, 2008

I struggle with this one since so often I have to cancel people out because I’m flaring.  I advise them that I have a chronic medical condition which unfortunately knocks me out. But I think it also sends the message to patients that my needs are more important than theirs. People are really great about it, but it bothers me that I cannot offer the consistency and dependability people need when they go to therapy. 

For example, I was flaring last week and told people I’d be calling them today, Sunday, to hopefully reschedule tomorrow. Well as it turns out I now have a cold and still need to stay at home.  It sounds so…flaky… and the STRESS of the uncertainty only makes me feel worse .  One thing about lupus is you need to really baby your body when anything comes on because your immune system cannot  defend the body against invading viruses, bacteria, etc.

Therapists are trained to only self disclose for the benefit of the patient.  I’m thinking that if they knew exactly what the medical condition is, they would understand why I have to frequently cancel and the uncertainty of when I can reschedule. But I’m not sure if I’m considering telling them for my benefit, so they won’t think badly of me, or theirs, so they won’t feel blown off and therefore feel badly about themselves. And then I’m afraid that if they understand the seriousness of my condition, it might scare them off…

So I’d really appreciate your input on this, especially if you’ve ever been a therapy patient. Would you want to know its lupus? How do you think this would make you feel? How might you respond?  Or is that way too much information?  Do you think the “chronic medical condition” is enough of an explanation?

Thanks for any help you can offer me here.

If I Were To Die Today (Part 3- Relationship with Self))

December 19, 2008

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Image copyright Jupiter Images 2008

Myself? I’m happy with who I am and what I’ve done in this life.  It took me a long time to grow up. Very long. Through one marriage and into the second, where I finally, finally grew my wings. (Thank to the snuggy, supportive nest my Alph made for me.)

I went back to college  pregnant with my second child and delivered her between semesters. Twenty five years later that child became my colleague and partner in our  psychotherapy practice. Imagine that?!! The joy I feel from this is beyond measure or description.  But more than that, I love that we are able to give our services to those who cannot afford it.  Kind of like Robin Hood. We get the max from our affluent clients and give it back, time wise, to our less fortunate ones.

I’ve learned to enjoy fun. I never played at all until a few years ago when I looked at some application which asked me to list my hobbies. I didn’t have any. For me, an A type, learning, seminars, learning, work were all I ever wanted to do.  (Tightly held secret: we shrinks rarely apply to ourselves the very things we try to teach our clients.)  It so bothered me that I thought: what have I always wanted to try? For me?  That turned out to be decoupage. Hours and hours of learning how to do it, but playing, enjoying the process, the creativity. Creativity had always been what sustains me, but I’d put it aside in my quest for achievement. Now I’m making jewelry. Another joy in the process. If my efforts produce lovely results, great! If not, I still had fun.  I’m also  waiting for my new camera to arrive (thank you, Amber, for putting the bug in me!) because I’m longing to express myself by capturing the other love of my life: nature.

If I should die today, my career goals would have been accomplished. I would die knowing  that I became the therapist I always wanted to be, who  helped a lot of people. The ones whose heartfelt thanks cannot begin to be measured and who I will never, ever forget. The ones who trusted me with their pain and their wounds, who inspired me with their courage, and who taught me so much. 

Have I become the woman I wanted to be? Well that, too, was an evolving process.  First I wanted to be a homemaker and stay at home mom. When that changed and I wanted to get an education and a career, the trouble started in my first marriage. That’s not what he signed on for. And in all fairness, that’s not what I’d originally agreed to.  We were so young. We just couldn’t navigate these choppy waters. We were only 21 when we married for goodness sake! Babies! What did we know about relationships? Giving?Flexibility? Growth and change? Nothing. Nothing at all.

It was a very painful divorce. Volatile, yet so sad. But as Carol Burnett once said, what doesn’t kill you makes you stronger. 

My onset of lupus and subsequent stroke have actually been blessings too. Not a life lesson I would  have chosen, but they were not exactly electives in the school of my life.  I’ve had to learn to rely on others which has been a humbling experience. A giver all my life (parentified child) it has been hard to learn to receive. Also…very nice…and quite beautiful.  And, of course, having come so close to death, I’ve learned to appreciate every moment of every day, and to thank God for the gift of my life. 

I read somewhere once that we’re bound by our fate only as long as we accept the values that determine it. I never forgot that. In fact, reading that, and getting it, is probably what changed my life. I got rid of my culturally imposed role of what a woman should be, and I learned to define myself. My self. MY self.  

I learned that personal authenticity is my primary value, and always will be. 

So if I should die today, I would die happy with my journey. Happy that I died as ME.

If I Were to Die Today (Part 2 – Relationship With Family)

December 18, 2008

Well, I’m still here…stroke symptoms morphed into a lupus flare…ok, I can deal with that, not so scary. Bed and tea and my laptop…small price to pay for some aches and pain!

Yesterday I focused on the spiritual aspects of death…and my not being prepared in that regard.  But today I want to talk about my loved ones. Most of all my husband and children.

I can only write from a selfish point of view on this, so here goes: I don’t want to miss watching my children’s lives further unfold. I have no grandchildren yet. I want to know them. I want them to remember me. Yes…I want to live on a few years longer by having a place in their minds…. I want to see what they look like! Since both my kids are pretty much clones of their father, maybe some recessive gene somewhere would reincarnate my physical characteristics… Narcissistic, certainly. But truthfully, don’t most of us long for a genetic  replica when we, or our kids, are pregnant?

Not so selfishly, I worry about them handling their grief. Oh I know, of course, that we all manage to do it.  But…loss is not a strong point for any of us in this family.  It takes us a long, long time….and I so wish I could spare them what God has decreed to be necessary…(There I go again. God certainly seems to be talking to me…however discreetly…)

My husband? Oh…this is a man who does not know who he is if he doesn’t have someone to give his whole heart and devotion to. He cannot stand to be alone. He would have to, HAVE to, find someone else to spend the remainder of his life with…to give that to… I’ve told him I would want that for him. But just between us….I don’t!!! I can’t STAND the thought of another woman having what was mine…his love, him….the thought of him holding and hugging someone else…I feel sick as I write this…but I also know he would NEED that….its not about ME anymore….but I’m just being truthful..we can all say what sounds like the right thing…but truthfully it makes me feel slightly ill….

Well, I comfort myself with the thought that if I were to die today, I would pass on to paradise, to the place where dreams are made…and later, my husband and kids would follow, and however they’ve gotten through their journey without me, none of it would matter in the WAY BIGGER scheme of things.

Well, I’m realizing that in both these posts I’ve pondered dying in terms of my relationship with others.  Not a word about my relationship with myself. Guess there will be a part 3 coming….

If I Were to Die Today (Part 1 – Relationship with God)

December 17, 2008


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 Copyright Jupiter Images 2008

 

What if today is the last day of my life?

These are the kinds of things you think of when you’ve had a stroke. I’m having symptoms which are scaring me, but I’ve spoken to my internist, and my rheumatologist’s nurse. Neither thinks its an emergency. She’s comfortable waiting for the rhuematologist to get to the office in a couple of hours to run my symptoms by him.

But I’m thinking it might be an emergency. For that matter, anything in life might be. A car accident. A heart attack.  Getting struck by lightening. I got struck by my stroke four years ago this month, actually. You don’t exactly expect these things.  But once you’ve had a stroke, and you read the statistics for recurrence, you become acutely aware of your physical vulnerability and of course your own mortality.  

Most days I remember to thank God that I’m alive and alert and have no noticeable loss of physical function, from which He miraculously spared me.I thank him for my family, and my work, and for every beautiful aspect of the four seasons as I experience them, day by day.

Of the legions of doctors I’ve met with for my various health issues, no one can believe that the perfectly normal looking, active professional woman sitting before them matches the carnage of a brain in the MRI also sitting before them.

But today I’m more focused on wondering if today is the last day of my life. No one, of course, knows the date of their death. Yet every living creature, on one particular point in the line of time, wakes up one morning… and no longer exists the next. 

Think about that. Wakes up one morning and no longer exists the next.

So feeling as I am this morning, I have to ask myself…what if? And what comes to mind, first, is that I have not managed to get into a personal relationship with God. With Christ.  Other Christians talk about it but I don’t know what that means. (If my sister is reading this I’m in deep trouble!)  

A personal relationship with the Almighty????  I picture the Almighty Presence, that gorgeous glow in the sunshine, spilling through the tree leaves and the clouds. I feel Him, and I see Him, in the wind. I pray to him and to His son. I thank Them. I beseech Them. I acknowledge them. But..it doesn’t feel personal…. more like wonder from afar…

The Christians I hang out with “walk closely” with the Lord.  I go to bible study with them but truthfully it feels like The Emperor’s new clothes when they talk of their relationship with the Lord, of their experiences of deep connection with Him. I myself have felt a deep connection to nature, His creation, since I was a child. ..But that’s not what they’re talking about…. So if today is the last day of my life, and I go to meet my Maker, will He welcome me? Will he know me?

I have no doubt of heaven. None. I know. I’ve had signs. I feel it in my soul  to be true that I will be going home again. And my earthly family members who have passed before me will be waiting there to welcome me…with much rejoicing, to use a biblical word.

Then there are my husband and kids.   But I’m getting tired now, and that’s another whole post. (There will be a Part 2 to this post not long from now.)

And since I started writing this, I got a message from my doctor not to worry. No emergency.  Thank you God that its not my time today.

At least I think not.

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