Archive for the ‘chronic pain’ Category

There’s More to Lupus Than You Know

May 15, 2009
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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.

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

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. 

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.

Psychscribe Quote # 48

December 16, 2008

 

Image from www.globalcollage.com

rain

 

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

Even White Girls Get the Blues

December 3, 2008

That title has nothing to do with my post. Its just a play on words of an old book called Even Cowgirls Get the Blues. I don’t know…that’s just where my brain went… Anyway, what I really wanted to mention as a P.S. to the Calling All Racial Minorities post about needing more money for lupus research is this:

 I specified minorities because that’s the majority of people who get it. But not all. I, for one, am Italian American.  My neighbor who has it is a platinum haired Norwegian American.  Just want to say that all the rest of us need to be heard too.

The end.

CALLING ALL RACIAL MINORITIES! No New Lupus Drug in HALF A CENTURY???!!!!!

December 3, 2008

What does “No New Lupus Drug in 50 Years” mean to you? Do you have lupus? Do you love someone with it? Did you love someone you lost to lupus?  What can you do?

And WHY has there been such a shameful lack of research??? Interesting that the majority of victims are minority women…blacks, Asians, Hispanics…. I can’t help wondering how much faster they’d be moving if the majority of victims were white, upper class men… The YouTube I’ve inserted here talks all about the difficulties of research due to the complexity of the disease and the genetic variations of the patients. But still…you have to wonder…

The Lupus Foundation of America invites you to share your story with Congress. FIGHT for more money for research!

Share photos, personal stories, put faces and details on the stats they don’t even have.

God helps those who help themselves. LET’S ALL DO IT! LET’S FIGHT FOR OURSELVES! Go to the LFA  website (link below) for details on how to make your voice be heard in Congress.

I know I will.  C’mon guys. We are all we have. Lets stick together and do this together. Look what Rosa Parks, one woman, was able to accomplish with a single act.

From the LFA Website:

November 20, 2008 marked the 50th anniversary of the last time the U.S. Food and Drug Administration (FDA) approved a treatment for lupus. Lupus Foundation of America (LFA) Medical Director Dr. Joan Merrill and LFA Medical-Scientific Advisory Council Chair Dr. Gary Gilkeson discuss this urgent issue and what LFA has been doing to bring down barriers to lupus drug development.

Homeopathic Medicine? or Scam?

November 28, 2008

Here are the facts of my recent consult. I would really like to know what you think or have experienced, positive or negative, in this area of medicine.

I wanted to try alternative medicine for my lupus since there doesn’t seem to be anything else to try except for chemo which I don’t want to do. I can still function and work and don’t want to live my life around that. I called this particular doctor of osteopathy because I heard he’d really helped a women with lupus for the past 20 years. He’s  in practice with his son,  a tech. First I met with the doctor, who spent over an hour taking a very comprehensive history.  He said traditional medicine teaches doctors to start with the symptoms, come to a diagnosis, and then treat the symptoms.  He explained that what he does is different in that he looks further back to the causes of the disease and starts his treatment there. Ok….sounded reasonable. He took quite a few vials of blood.

The next step was to go downstairs to his son and get tested for the causes. With blind faith I went, not even asking about what the procedure entailed. What it turned out to be was three hours of testing using some kind of probe on the meridians of my fingers which produced computerized data for his father. (For the uninitiated, meridians are the energy fields used in accupuncture.) This cost $550. and was not covered by insurance.

I then went back to the doctor at a later date for the results. The blood tests were unremarkable. But  the computerized meridian tests indicated all sorts of parasites, bacteria, viruses, low functioning adrenals, and lymes disease which I have apparently had for at least 8 years. I have been tested many times by my rheumatologist for lymes and adrenal functioning but he and his son explained the test was for “stealth” organisms which hide by embedding in the organs and escaping detection of traditional medical tests….He said that the hidden stealth organisms are what cause the autoimmune system to attack the body. 

He offered an eight month treatment plan, to the tune of several thousand dollars, none of which is covered by insurance. To start with, animal stem cell injections. Then various kits from his son with herbal remedies which would definitely help my immune system. I reminded him I’d come in for help with lupus and he said, “Oh? IS it lupus?” He suggested I not tell my regular medical doctor about the treatment since they’re so skeptical of alternative medicine, and then let him be surprised after the treatment with the improvement in my health and THEN tell him how I’d gotten better. (Ok, even as I write that I am embarrassed…what BAD medicine it is to NOT practice coordination of care!)

So now I finally decided to do some research (duh) and I find out that homeopathic remedies are so diluted that basically there is nothing of the original “essence” left by they time you take it. Lots of talk by traditional medicine of no research, just placebo effect. 

Responses, anyone? I would so appreciate them….

Cross

November 25, 2008

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Baby Laughing at Wii

November 7, 2008

Ok, this may be a sign of my obsession with wanting a grandchild, but I ask you….can you watch this and NOT laugh just hearing him? I hope this brings a smile, or a laugh, to you today.

 

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?

Lupus Facts

October 15, 2008

From the Alliance for Lupus Research:

Facts on Lupus:

  • Lupus hits hardest one of our nation’s most medically-underserved populations.
  • While the disease also affects men and children, 90% of all those diagnosed are women in their childbearing years.
  • Women of African-American descent are two-thirds more likely to be diagnosed with lupus.
  • Also particularly vulnerable are women of Hispanic, Asian, and Pacific Islander descent.
  • Lupus costs the nation over $100 billion a year in direct and indirect medical costs.
  • The number of Americans currently affected by lupus is estimated at 1.4 million.

*All statistics from U.S. Department of Health and Human Services.

How Hospitals Can Kill You

October 7, 2008

I read a really scary article in Live Science that is hardly comforting to people with chronic illness. I mean really scary, at least to me. Every time I’ve been rushed to the hospital I’ve felt safer the minute I was triaged into the noisy, flourescent, bustling emergency room. So many people watching you, sticking you, taking your body fluids and analyzing them. They’re not gonna let you die, right?

Wrong. I mean, we’ve all heard that hospitals screw up sometimes, but this article put it all together into one punch in the stomach whole.

The article How Hospitals Can Turn Deadly by Robert Roy Britt

mentions, in part,  the following:

Superbugs – staph infections which apparently thrive in hospitals, increasingly resistant to antibiotics, and according to the CDC responsible for 99,000 deaths in 2002. If you’re young, not to worry.  Most younger people survive such infections, its the elderly who die. People like your grandparents.

Noise – causes staff stress and more errors.

Exhaustion – overworked residents and other staff are sleep deprived. A study showed that they were three times more likely to report a fatigue related “significant medical error.” I have always wondered about that when I watch Grey’s Anatomy. Not to mention all the doctors missing in action in the on call rooms. (Those scenes are accurately depicted, by the way. I used to be married to a medical resident.)

Bad timing- Whatever you do, don’t have an emergency during off hours or on the weekend. You’re more likely to wait longer for help and at a higher risk of death. This is cited in a JAMA published study on heart attack victims.

Really scary,  but along the same lines, the article statees that “babies born at night are at least 12 percent more likely to die within 28 days, according to a different 2005 study. The reasons are thought to include fatigue and inattention related to shift changes.”

Really getting burned- This one freaked me out, I’d never heard of such a thing. Apparently, in Pennsylvania,  “every year about 28 patients are burned during surgery by fires, such as when oxygen inside a mask ignited. Extrapolated nationwide, the data suggests 550 to 650 surgical burns occur nationwide each year, including one or two deaths, according to a recentMSNBC analysis. Cathy Lake, the daughter of a surgical burn victim, createdwww.surgicalfire.org to highlight the problem.”

Medication mistakes-    A 2006 study found that medication mistakes injure more than 1.5 million Americans every year.

In all fairness none of these things has ever happened to me, and I’m a frequent flier to hospital staff in the various states I have called home.  But in all fairness, shouldn’t hospitals be more closely monitored for careless mistakes?? Research and exposure to the pubic about these things is one thing. But how about consequenses? We all know that in medicine, like anything other business, money is the bottom line. How about the government fining hospitals for careless mistakes? I’ll bet you that would decrease those stats.

OK, I’ll give them a break on the resistant staph thing. Who knows? Maybe its extra-terrestial or something.

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

 

 

Sometimes a Cigar is Just a Cigar

September 30, 2008

Ok…so…how embarrassing is this? For two weeks now I’ve been blaming my aches, pains, weakness and malaise on my “lupus flare”. I mean, it has felt the same as it always does, plus factor in the wedding and attendant stresses and of course its a flare, right?

Wrong. I’ve been noticing I have sniffles and a sore throat..then it occurred to me that back in the old days, 4 years ago, before I knew I had lupus, I used to get flu like symptoms every fall and spring. I mean I always felt  REALLY sick. Only now, ever since I was diagnosed with lupus, I think that every single ache and pain I ever get is a lupus thing.

Well, the rest of the story is obvious from my title. Today I dimly remembered how I used to feel, pre-lupus, so I  tried my favorite allergy medication and it worked like a charm. I feel like a new woman! Hear me roar, everyone!

So, this supports Freud’s famous line…sometimes flu like symptoms are just…flu like symptoms…