Archive for the ‘chronic illness’ Category

There’s More to Lupus Than You Know

May 15, 2009

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.

The Good News and the Bad News

April 18, 2009

 

Well, I saw my rheumatologist today. He said my blood work indicates not systemic lupus, but mixed connective tissue disease. He was quite cheery because he said it does not attack the organs like systemic lupus, so this is great news and I should be relieved. But me being me (and most of you being you) I researched it online.  

From MedicineNet:

“Mixed connective tissue disease, as first described in 1972, is “classically” considered as an “overlap” of three diseases, systemic lupus erythematosus, scleroderma, and polymyositis. Patients with this pattern illness have features of each of these three diseases. They also typically have very high quantities of antinuclear antibodies (ANAs) and antibodies to ribonucleoprotein (anti-RNP) detectable in their blood. The symptoms of many of these patients eventually evolve to become dominated by features of one of three component illnesses, most commonly scleroderma.

It is now known that overlap syndromes can occur that involve any combination of the connective tissue diseases. Therefore, for example, patients can have a combination of rheumatoid arthritis and systemic lupus erythematosus (hence, the coined name “rhupus”).”

Well woo hoo! Woo hoo!

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

UTI- Sick Humor

March 16, 2009

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!