Tag Archives: prednisone

Stopping Steroids … Finally

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For the past 10 years or so, I’ve been on prednisone.  Most people that have autoimmune disease wind up taking steroids.  The lucky ones can be on them for short periods of time.  The not-so-lucky … like me … require high doses for long periods of time to keep their immune system in check.  Sometimes, I’ve been on 80 mg a day for months and months, and months.  Ick.  My hair gets brittle, my skin thins out like tissue paper, I develop bruises everywhere, and worst of all, I get a little crazy.  Can’t sleep.  As a bonus, I get this voracious desire to eat anything that isn’t tied down or locked up.  But the best is the paranoia that is known to set in with high doses. You could call me a little nutty because occasionally, I am certifiable.

I’ve finally … FINALLY … taped completely off these evil little pills.  At this point in my disease, other medications, most likely the IVIG infusions I get every three weeks, are taking the lead and keeping most flare ups at bay.

Stopping steroids isn’t easy.  If you taper too quickly  (as I have done more than once), you can easily find yourself dealing with adrenal insufficiency.  Basically, it feels like you’re having a heart attack and are about to die.  If you stop completely (which I have not attempted) you can go into adrenal crisis, which can be life threatening.  My taper regimen took about three months, once I got the go-ahead from my rheumatologist.

Long term use of steroids can cause all sorts of damage.  It can cause permanent bone loss, high blood sugar, high blood pressure, thinning of the skin, and what is nonscientifically referred to as a ‘camel hump’ of a fat deposit on the back of the neck. It also likes to settle in the abdomen for a permanent little pad of tummy fat.  There are no exercises in the world that will get rid of them.

I know deep down in my steroid-damaged bones, that someday there will be a cure for this crummy disease.

In the meantime, I’m off steroids and I’m doing my happy dance!

To Do List – 2010

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I’ve been searching for a topic to write about when I ran across a great post from Organised Chaos, who borrowed her idea from Kelly.  I’m passing it on to this side of the hemisphere/blogosphere and heaven only knows where it will go from here.  Feel free to write your own list (or not) and if you have time, mention where it originated.

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Writing down a list of Things To Do always helps me stay organized and focused.  However,  these are not resolutions!  I love the promise that comes with a new year, so here’s hoping 2010 will be a fantastic one for us all!

In no particular order …..

**   Wean completely off prednisone. Started at 80 mg seven years ago and am down to 2 mg today.

**   Eat breakfast each and every day and not skip meals.  So for I’ve stayed on track.  Yay me.

**   Play my guitar on a regular basis.  It’s a lovely instrument (Martin 1972 D-18) and I’ve neglected it too long.

**   I’m getting a tattoo come hell or high water.  Probably hell.

**  Think about getting another kitty.  The key word here is think.

**  Download more songs from iTunes.  It never gets boring.

**  Keep painting.  I might be famous one day.  Or not.

**  Be more mysterious and less serious.  I’ll let you know if this works in my favor.

Now get going and have a fun,  crazy, healthy and happy 2010!!!

Safe Harbour

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safeharborWhen you live with an autoimmune disease like lupus, your overall health and well-being is usually in an ongoing state of flux.  I don’t expect to feel crummy when I wake up in the morning.  I never take for granted the days without complications or reminders of my limitations.   Some days, however, I wish there was a safe harbor where I could go for rest, comfort, love and reassurance.  Life with lupus is often an unpredictable crap shoot.  And the long-term odds are never on the side of the  patient.

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A good day for me is when the medicine is working, pain is manageable, the weather cooperates and the mind is untroubled.   Most of the time I am optimistic.  Most of the time I am fully engaged in the here-and-now.  Most of the time I can laugh about almost anything, especially myself.  I feel creative, energetic and productive.  When I can reach out to help someone in need, I am acutely aware of the blessing and grace that enables me to give.

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There are other days when I feel vulnerable and exposed.  Today is one of those days.  I hate the way that makes me feel.  I resent feeling weak.  I walking with a limp.  Anemia gives me a pasty complexion.  The cutaneous vasculitis lesions continue a slow, persistent march across my torso and extremities, despite all the drugs and all the infusions.  I have bruises in unexpected places, courtesy of steroids.  Chemotherapy and steroids have taken their toil on my appearance.  Sometimes I feel as dumb as a box of rocks …  “lupus fog”  caused by small vessel vasculitis or middle age or heaven only knows what else.  I see all too clearly the downward slide of  my baseline health and it scares me.

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I often wish for a safe harbor; a loving partner who would comfort and reassure me during storms caused by lupus.  I hear stories about how spouses pair up for doctor appointments or keep watch at the bedside of their loved one in hospitals.    Someone who keeps their promise in good times and bad.   A partner who is willing to  clean and shop when the other one is too sick to handle it alone.   What does it feel like to be loved for who you are, with or without a chronic disease?  Will I survive without this type of love?  Of course.  Would it really make a difference when lupus has the upper hand?  I wish I knew.

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There are other types of safe harbors in my life … my home is often a refuge.  I love to read and can easily get lost in a good story.  When I’m buzzed on steroids, I often set about cleaning out dressers and drawers.  I don’t take my friends for granted and truly enjoy the safe harbor of their company.  For years, I have spent quiet weekends at home, and don’t think about the fact that I’m alone.  But on bad lupus days when it’s painful to walk and getting out of bed is a big ordeal, I wish my life was different.  I wish it wasn’t so hard to reach out to people instead of opting for self-imposed isolation.  I don’t want to expose my insecurity.  This is my pattern when lupus has the upper hand.  Maybe there is no such thing as a safe harbor when I feel like crap.

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I have insecurities and fears, just like everybody else.  I am also a strong, intelligent, independent woman who appreciates the blessings in my life.  I’ve been divorced, unemployed, raised a child on my own and started my life over more than once.   And I have faith to keep trying.

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I have lupus.  And some days are not easy.

30 Things About My Invisible Illness You May Not Know

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invisible illness

I’m posting this Meme in support of  National Invisible Chronic Illness Awareness Week.

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1.  The illness I live with is: Systemic Lupus.  I also have Sjogren’s Syndrome, autoimmune hypothyroidism, and fibromyalgia.

2.  The year I was diagnosed was: 1992.

3.  I had symptoms since: I was 9 years old.  Nobody knew what was wrong with me at that time, except I was anemic and tired.  In 1989 I began experiencing additional symptoms that went undiagnosed for several years.

4.  The biggest adjustment I’ve had to make is: Accepting my limitations, avoiding sunlight and knowing that my health is tenuous, at best.

5.  Most people assume: That aside from gaining weight (from years of chronic steroids) I look relatively healthy.

6.  The hardest part about mornings are: Not knowing if I will be able to move without pain.

7.  My favorite TV medical show is: House … mainly because it’s smart and funny.  But also because according to Dr. House “It’s never lupus.”

8.  A gadget I couldn’t live without is: Well, it’s not really  a gadget, but I couldn’t live without my sunglasses.  I even have tinted glasses to wear inside when my eyes are really bothered by certain lighting.

9.  The hardest part about nights are: Being in pain and having difficulty falling to sleep.  Feeling alone and isolated.

10.  Each day I take: 14 pills in the morning and 6 pills at night.  And every three weeks I go to the hospital for infusions that take all day.

11.  Regarding alternative treatments, I: would like to try acupuncture if I could afford it.  Therapeutic massage is beneficial when my skin isn’t combating vasculitis.

12.  If I had to choose between an invisible illness and a visible illness, I: have had both and would like to have neither.

13.  Regarding working and career: I’m just trying to hold on to the job I have now.  I used to think I had a career when I was in my 20’s and 30’s.  That was a while ago.

14.  People would be surprised to know: the amount of time and energy it takes to do what used to be routine things in life, like grocery shopping and cleaning.

15.  The hardest thing to accept about my new reality is: there is no cure for my disease.

16.  Something that I never thought I could do with my illness that I did: was be able to travel.

17.  The commercials about my illness: do not exist.

18.  Something I really miss doing before I was diagnosed is: Spending time outdoors in the sun and swimming!

19.  It was really hard to give up: my independence.  There are certain things I just can’t do and have to ask for help.

20.  A new hobby I have taken up since my diagnosis is: Blogging about having lupus!  Also knitting AND painting.  I’m a beginner at both but thoroughly enjoy the creativity and challenge.

21.  If I could have one day of feeling normal again, I would: spend the day at the beach, walking along the shoreline and searching for sea glass.

22.  My illness has taught me: patience and humility.

23.  Want to know a secret?  One thing that people say that gets under my skin is: “You look so good today!  You must be feeling better!”

24.  But I love it when people: ask if they can help, make me laugh, and let me help them when I can.

25.  My favorite motto, scripture, or quote that gets me through tough times is: “When you get to the end of your rope, tie a knot and hang on!”

26.  When someone is diagnosed I like to tell them: You are not alone.

27.  Something that has surprised me about living with an illness is: how many people expect you to carry on as if you had no limitations.

28.  The nicest thing someone has done for me when I wasn’t feeling well was: More things than I can list!  I am blessed with kind, thoughtful and caring family and friends.

29.  I’m involved with Invisible Chronic Illness Awareness Week because: I have systemic lupus and want to raise awareness about not only my disease, but about all invisible and chronic illness.

30.  The fact that you read this list makes me feel: very grateful!  Thank you!

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Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers September 14-18,2009 at www.invisibleillness.com

World Lupus Day

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May is Lupus Awareness Month.  May 10 is World Lupus Dayworldlupusday.

A few days ago, I started experiencing the all-too-familiar signs of a lupus flare ramping up.  My joints started aching, and I started having hives around my hairline and neck.  Sure enough, I woke up with my skin feeling like it was sunburned.  When I got out of bed, I noticed my thighs were covered with red blotches.  My back and arms were red and lumpy.  My feet and shins had new vasculitis lesions.  I was covered in sweat and running a low grade fever.

There’s nothing I can do about this flare.  I just have to deal with it and hope it doesn’t get worse like last year.  I’ve blown through all the pharmaceutical options to treat lupus.  My insurance carrier is reviewing a “second level” appeal from my doctor for IVIG therapy.  It is the only therapy that works for me.  If this second appeal is denied, I will be out of luck.

Did you know that in the last 50 years, there have been no new drugs developed specifically to fight lupus?  Currently, the only drugs on the market used to specifically treat lupus are Plaquenil, prednisone and aspirin.  How pathetic is that?  Instead, doctors have had to use “off label” medications like chemotherapy and other immune suppressors to fight lupus. All have toxic side effects.  Sometimes I don’t know if the drugs are worse than the disease itself.

The video  below is entitled  Faces of Lupus. Pray for a cure.

Letting Go

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I was blessed this past Sunday with the ability to sing for Mass at my church.  Music and singing is a big part of my life.  I started playing guitar and singing as a  teenager and over time, music became a strong avocation.  I’ve been singing ever since.

Having a little bit of talent does come with some modest benefits.  I’ve been invited to sing for parties, weddings and funerals for friends, family and my church community, and consider it an honor to be asked.  I’ve also been paid to sing for commercials, demo tapes, weddings and funerals for people I don’t know and appreciate the extra money.

I sing.  It’s a heaven-sent gift and I know it.

Right around the time my body was ramping up for a particularly nasty lupus flare in 2002, I got involved in a  music project to raise money for Cardinal Glennon Children’s Hospital in St. Louis, a non-profit pediatric health center.

A friend of mine (I won’t mention his name but his initials are F.R.A.N.) and I bribed and cajoled a talented group of musicians, composers, engineers, singers, and volunteers to bring this project to life.  In the insuing three years, we successfully produced two CD’s of contemporary Christian music, with proceeds all going to the hospital’s expanded emergency room center.  Our little project, called GlennonSongs, was a labor of love that financially benefited the hospital.  It was also a creative outlet that was extremely rewarding for us.

Of course, working full time and spending all my spare time on this music project didn’t sit well with my immune system.  I got really sick with a lupus flare and was drugged up on prednisone and methotrexate.  Trust me when I say prednisone allowed me to work late seven days a week.  I was moody and anemic,  constantly in pain. But I was wide awake.  For three years.

I refused to give in to lupus.  I would not let go.

My road back to singing has been very slow.  I was too weak to stand and sing in church for a long time.  I couldn’t hold a guitar, look at music and sing into a microphone because I would get terribly dizzy.  Steroids made my voice reed-thin and without strength.  If that didn’t do me in, I’d get those awful steroid sweats, accompanied with chest pain and heart palpitations.  I couldn’t tolerate the loud noises and bright lights.  My eyes would hurt and my head would ache.   Why try to get back to the music when the road is so long and difficult?

Last Sunday I looked at the stained glass window in my church. I thought of my mother.  I asked Mary to give me the strength to sing my song.  I was blessed.

I found my voice, my prayer, and my music.

This time, I had the strength to let go.

Saying buh-bye to my hair

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I mentioned noticing hair loss a few posts ago.  At this point I have to face the reality that my hair is seriously falling out.  Today I can see my scalp.  The texture has changed and it is noticeably thinner, especially around the front of my face.  There was a time when I’d be taking 60 mg prednisone a day and my hair would become brittle and break easily.  My present dose of prednisone is 5 mg, so I don’t think that’s the problem.  My thyroid levels are normal.  Is it the Imuran I’m taking?  Is it the infusions?  I started noticing some moderate hair loss after starting Imuran, but only when I was drying my hair.  A few weeks ago my dose was increased by 50 mg.  During this period, I also started immunoglobulin infusions.

So here’s the rub.  There’s nothing I can do about this.  I could stop taking Imuran, but I’m not 100% sure that’s the problem.  I don’t think the IVIG is the culprit.  Not knowing what the hell’s going on here really pisses me off!  What’s next?  Who knows?  Should I buy a wig? I’m sick of having to stop and adjust to yet another lupus-related problem in my life.

Yes, I know there are people out there with bigger problems than mine.  Yes, I’m grateful for all the good things in my life.  But today, I’m ranting. Today lupus has the upper hand … again.  Today I feel helpless.

Not too long ago I read a blog where the author posed the question: ” What do you do to relieve stress?”  I know what helps and what doesn’t.  But I’m not interested in constructive ideas at the moment.  I want to crawl into bed, pull the covers over my head and cry.  I want someone to put their arms around me and tell me they love me no matter what I look like.  I want to take a shower and not have a handful of hair circle the drain.  I want to pull myself together, feel brave and keep moving forward but today I just can’t.