Posts Tagged ‘Lupus’

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

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

images-2

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

 

urticaria_resized

 

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!!!!  😦

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!

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?

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, UTI’s, & the 30% Club

January 17, 2009

medical_urinary-tract-infection

 

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.

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.

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

 

 

Am I Destined for an Early Death?

May 16, 2008

I don’t mean for this topic to be depressing, truly I don’t…but sometimes I just get tired of being so upbeat, you know? For the first three years after my lupus diagnosis, nothing much happened… it was managed by medication and I was in blissful denial. I started a full time counseling practice with my daughter and I felt as normal as anyone else…excited and happy..but the last 6 months or so my flares (for the uninitiated this means active symptoms where you feel sick, weak, achy, exhausted, foggy, and worst of all cannot go to work) have been increasing in frequency. From a couple of times a year to every couple of months. From what I have read of other people’s experiences, this is usually the beginning of the long, sad road into disability.  

However its not disability that’s on my mind so much as having to leave this world before I get to meet and enjoy my grandchildren. My paternal grandmother died of heart disease in her 40’s when I was four, so we really never got to know each other. But I was named for her. I remember my father frequently taking me to the cemetery and seeing my name on her gravestone. It didn’t frighten me, but did seem to be a connection of sorts. The same name, the same short life. Was her fate my fate?  Then my father, my hero, died in his early 50’s of cancer, leaving behind two very young and much adored grandchildren. At every life passage they’ve gone thru, I have missed him and wept for all that he and they missed..

So its hard not to worry that their destiny is mine… that I have some sort of destiny gene that will call me early from this life. I have no fear of death and passing, because I believe in my God and the hereafter…but I do so fear having to miss the rest of my life, and being an active grandmother… (They have not even been conceived yet, but my daughter promises me they will be working on it immediately following their wedding in September )  

I fear the loss of all I yearn for.

Please Lord, not yet.

Message for Therapist from God

April 27, 2008

Hi All…well I’m home from the hospital and should be grateful to be alive…which I am…but I’m having a delayed reaction to the whole emergency experience. One minute you’re feeling as normal as anyone else (which you’re not, of course, no one is with a chronic potentially fatal disease like lupus)   the next minute you’re in an emergency room, delirious with fever while doctors fight to save your life. You’re vaguely aware of what’s going on, including the fear in your husband’s eyes, but mostly you just slip in and out of the the delirium. 

Stabilized, they find you a bed and you remain for five days till there is no fever and vital signs remain normal. Tests are performed from head to foot in order to discover the source of the infection, but it is never found. Nor could it be since they pumped me up with IV  antibiotics the minute I got to the emergency room.  One doctor told me later that I would have been dead within 24 hours had I not been given the antibiotics.

Maybe that last statement is what has really got me. How close I was to death. I’ve licked death beyond all odds several times in my life. About ten years ago I flipped my car over on black ice. It was completely crushed and I was hanging upside down. No one could believe I managed to extricate myself and crawl away from the crushed car before the emergency people arrived… but somehow I did. No one should have survived the stroke I had in 2004,  nor the Stevens Johnson Syndrome I developed after that, but I did.

Maybe what really has me is how many more times can I beat the odds? I am an at risk older female. All the time.  You feel so infantilized in the hospital. They are always  watching you, taking care of you. By the time you get out, it somehow feels scary to be an adult again. You kind of want to crawl back into the womb, even though you thought you wanted to get out. It was constrictive, but safe…

I wanted to go back to work this week, but I just can’t. Half of it is that my body is telling me I need to rest. But the other half is the post trauma effect I see in myself.  I have to help myself before I can help my patients. Yet then I feel like I’m abandoning them.

On the other hand, I had no idea how many caring friends and neighbors I have here in the community in which I live. We’re “weekenders” here so you never really feel like you belong. Yet flowers, people, sweets, cards and prayers just came pouring in. I was truly astounded and moved. Who knew?  

 So since I know that God is always trying to  teach me something, maybe this is what it is, the clue phone for the therapist, a message from God: ” You always teach your patients about the importance of a sense of connection to a supportive community. What makes you think you are any different? When are you going to realize that being a loner is lonely, even with a husband and kids?”

I’m getting it, God. I’m getting it. 

 

What Goes Up Must Come Down…

April 9, 2008

Well, I raised hell for two days and paid for it for three days – still, it was worth it. As the lupus Spoon Lady has already explained, we Lupies are allotted only a certain amount of spoons per day. We never know how many. Sometimes we can borrow from tomorrow’s spoons, but eventually we find our stash empty and need to sleep while new ones morph back into our bodies…

Lupus: Sharing Some Hope

March 2, 2008

A dear cousin sent me the following encouragement, which I thought I would pass along to others with lupus:

Hi, I was  just thinking of you. One of my friend’s mother-in-law was diagnosed with Lupus in her late 40s, early 50s and suffered terribly with episodes that sound just like yours, not being able to get out of bed for ten days at a stretch.  And then one day, she just stopped getting those episodes and hasn’t had one since.  She’s 65 or 70ish now so I just wanted to give you some hope that “This too shall pass.”

Lupus – I confess

January 16, 2008

Well, anyone who follows my blog has probably figured out by now that I have lupus.  I hide behind my screen name on this because I’m afraid my clients will either not want to work with a therapist who has a chronic illness, or feel like they need to take care of me. I realize the word “confess” in the subject line sounds like I feel like I’ve done something wrong. I don’t. I just mean I confess to the truth  that I’ve sort of, kind of, been hiding in my blog. There are some patients of mine who have the link to this blog. These are paients I have a longstanding relationship with who I trust will not draw back in horror. And who I trust are healthy enough to handle this infomation.

I think I’ve chosen to come out of the closet on this because there is a stigma about having it, much as people whispered about someone having cancer when I was growing up.   Or else people don’t know what on earth it is, or have heard only horror stories. I will tell you my story in a subsequent post. I want to raise public awareness about this disease and as of this post, I’ve had a defining moment! And it feels good.  It also feels good to me because lupus affects mostly women,  and I have always been a champion of womens issues.      To be continued….

This is Lupus: YouTube

December 19, 2007

Most people don't really undersand this disease, how prevalent and devastating it is. If you would like to find out how you can help, please click on the organization which produced this YouTube:  Lupus Foundation of America

Lupus : Defining Moment

December 5, 2007

 Denial serves a wonderful psychological purpose.   Thus the “NO!! ” when someone gets terrible news. It is nature’s built in kindness to buffer the inevitable.  Slowly, carefully, each according to his or her own psyche, we absorb the pain.

There are some medical diagnoses which, while not immediately life threatening, pretty much alter your life. At least eventually.  Since lupus is my poster child, that’s the one I speak of here. 

You learn very quickly that there is no cure. The  disease may attack any  of your  major organs.  Heart. Brain. Kidneys.  

No! you think. No!.

You learn that there is treatment. You  also learn that the treatment itself may kill you even if the disease does not.  

No! you think. No!  

If you are lucky enough to get relief from the medication at first, you can go about your normal life for a long time. You can still do your life’s work.  Interact normally with friends and family.  I must be one of the lucky ones, you think.  I’m not as bad off as some people you hear about.  

No! you think. No!

 Then you get a flare and you’re knocked into bed and out of your life for a while. A week….longer.

 No! you think. No! I’m just having a little setback here but I’m not sick.

Eventually you find yourself in bed more often and for longer periods. Or maybe the doctor decides to try stronger medication. With stronger side effects. You could have a remission that could last for years. Or not.  In any event, finally, inexorably it dawns on you: I am no longer as I was before.

Your medical condition does not define you.  But it does define  your  life. What you can and cannot do. The plans you can’t make because you can’t count on feeling well  enough on any given date. The plans you want and need to make because you can’t count on anything anymore.

Yes, you whisper quietly to yourself.

Yes. I accept.

This is a defining moment. Now you are ready to grow.

Lupus – The Spoon Theory

November 27, 2007

This link is offered for anyone who has lupus and would like to be able to explain the fatigue aspect of it  in a non-medical way. It is also offered for anyone who would like to understand how someone so ill could look so…normal!  (or why someone who looks so normal when they come to your house for dinner does not get up to help you with anything!)(http://www.butyoudontlooksick.com/the_spoon_theory/

Do You Know How it Feels to Have Lupus?

November 23, 2007

 How would you like to be living with a disease that attacks your own  cells and organs? Things like your skin, heart, lungs, brain, joints and kidneys?  How would you like to be living with a disease in which your own body has turned on you and may eventually kill you? That would be lupus. You’ve probably heard of it, but do you know, exactly, what it is? An amazing amount of people don’t, considering it’s high incidence in our population.

The Lupus Foundation of America estimates that more than 16,000 Americans develop this disease each year, and 90% of them are women ages 15 – 45.  Lupus is a non-contagious,  autoimmune disease. Normally the body’s immune system makes proteins called antibodies, to protect the bgody against viruses, bacteria, and otehr foreign materials. These foreign materials are called anitgens.  With Lupus, the immune system cannot tell the difference between foreign substances and its own cells and tissues. So the immune system then makes antibodies directed against itself. These antibodies – acalled “auto-antibodies” cause inflammation, pain and damage in various parts of the body.

Do you want to know how it feels to have lupus?  Today I offer you an essay  link written by Christine Miserandino, a young mother with lupus : My Secret Is Safe With Me: what I wish people knew about me.   It is from the But You Don’t Look Sick website.