Category Archives: Chronic Illness

30 things about my invisible illness you may not know – 2011

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30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW

1. The illness I live with is:  Systemic Lupus Erythematosis, Sjogren’s syndrome and autoimmune hypothyroidism
2. I was diagnosed with it in the year:  1992
3. But I had symptoms since:  I was 9 years old
4. The biggest adjustment I’ve had to make is:  avoiding UVA/UVB rays
5. Most people assume:  I’m NOT sick because I don’t often look ill
6. The hardest part about mornings are:   joint pain
7. My favorite medical TV show is:   Mystery Diagnosis!
8. A gadget I couldn’t live without is:   sunscreen lotion!
9. The hardest part about nights are:   joint pain.
10. Each day I take __ pills & vitamins. (No comments, please) 14
11. Regarding alternative treatments I:  wish I could afford acupuncture (because I haven’t tried it) and craniosacral therapy (because it really helps)
12. If I had to choose between an invisible illness or visible I would choose:  NEITHER!
13. Regarding working and career:   I used to work full time but am now on disability
14. People would be surprised to know:  how much sleep I require
15. The hardest thing to accept about my new reality has been:  realizing that I can’t work full time, even if I want to.
16. Something I never thought I could do with my illness that I did was:  travel.
17. The commercials about my illness:   really don’t tell the whole story.
18. Something I really miss doing since I was diagnosed is:   basking in the warm sun.
19. It was really hard to have to give up:   being outdoors on a regular basis.
20. A new hobby I have taken up since my diagnosis is:  designing and creating jewelry.
21. If I could have one day of feeling normal again I would:  spend the day outside at a park.
22. My illness has taught me:   patience.
23. Want to know a secret? One thing people say that gets under my skin is:  “Have you every tried …..?”
24. But I love it when people:   tell me they keep me in their prayers.  It really helps.
25. My favorite motto, scripture, quote that gets me through tough times is:   When God closes a door, he opens a window.
26. When someone is diagnosed I’d like to tell them:   you are not alone.
27. Something that has surprised me about living with an illness is:   the isolation of living with a disease none of my friends have.
28. The nicest thing someone did for me when I wasn’t feeling well was:   give me a hug.
29. I’m involved with Invisible Illness Week because:   I have lupus.
30. The fact that you read this list makes me feel:   I’m not alone.

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one year later ….

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My sister once told me that it takes about two years to settle in to a new living environment, new city, new community, new life.  That would mean I am halfway through the process.    Life is good in Cape.  At the same time, I really do miss many aspects of  my old life in my hometown.  I can’t help it.

Initially, I spent a lot of energy shutting out and shutting down the frustration and anger that comes from losing a job and an independent life.  Living with lupus for 19 years taught me to push through the process.   I know how to operate in “survival readjustment mode”,  because that’s what people with lupus do.  It wasn’t hard to transfer those skills to life on disability and unemployment.   I’m getting good at that.    Moving forward is more challenging.  I’m not sure why.  It just is.

Some elements of life seem to be in a continual state of uncertainty.  Like my health insurance.  I may or may not get state aid and if I do, it may or may not cover the infusions I need every three weeks.  I may or  may not move to Wisconsin; it depends on money and health insurance.  Stuff like that drives me crazy, so I try not to think about such things very often.  I have no control over it anyway.

Spiritually and emotionally I feel like I’ve been living in a desert.  It took me about a year to realize I’ve wound up in the desert, and I guess it will take a while to figure how to get out of it.  I have attempted to reconnect with my spiritual self through music.  Singing has always been my preferred method of praying.  I hope it works.

Some days I consider myself very fortunate.  I’ve had some amazing trips this past year with friends and family, and have visited parts of the country I’ve never seen before.  There have been a few occasions when I’ve been able to drop whatever I was doing to help someone out during a major or minor crisis.  I’ve reconnected with my inner artist and continue to design jewelry.

Obviously, I haven’t written much this year.  I was shocked to see my last post was in February.  My inner slacker has been running wild.  Then again, I’m at it again today and maybe I’ll be inspired to write on a more regular basis.

I guess I look at everything with a very cautious, tentative attitude these days.  It’s an intentional tactic, one that I haven’t tried out very often in the past.  If it seems vague and uncertain, I guess it is because it’s a reflection of how I feel.  For now, I feel I’ve reached a saturation level of physical and emotional chaos and upheaval.    I’m trying my best to stay calm and carry on.

A Fine Mess

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January was a busy medical month.

My rheumatology checkup was on January 31st and I had a laundry list of things to accomplish before I showed up in the exam room.  Went to the ophthalmologist for a visual field test (because I’m on hydrochloroquine a.k.a. Plaquenil AND have Sjogren’s disease and need eye drops).  Had a bone density study (due to a long-term use of steroids).  Had a mammogram (because I was WAY overdue for one).  Had blood and urine studies (because my doctor wants labs every 6 weeks).  I also went to see my internal medicine doctor for a routine checkup.  I get to visit the dentist next week too.

I was also supposed to see the nephrologist before the end of January.  That appointment didn’t happen.  My rheumatologist wants me to be evaluated AGAIN for kidney failure.  In my all-knowing medical opinion, I’d rather not think about my kidneys, so that little detail remains on my “Things I’d Rather Not Do Right Now” list.   My kidneys don’t hurt so I’m guessing everything’s fine.

I thought I could do some fancy footwork and rope-a-dope my way out of the kidney doctor appointment.  However, my rheumatologist is a very smart guy.  He went down his little check list and told me to see the nephrologist.  He said it doesn’t matter if I’m not diabetic and my BUN and glucose levels are fine.  My creatinine is way too high and my kidney filtration rate is way to slow.

Rats.

A reasonable person would just suck it up and go see the kidney doctor.  But I’m not always reasonable … at least when it comes to having lupus.  Usually, I’m very compliant about my medical issues.  But for some reason, I’ve managed to avoid making an appointment with yet another specialist.  I simply don’t want to go.  I know I should and I will.  I just don’t want to. The thought of having yet another lupus-compromised organ in my body makes me pissed off.

On top of everything, my insurance carrier stopped paying my IVIG infusions since last September.  Turns out, there was a mix up about the J codes used in the billing process.  In August 2010, the specific brand of IVIG used by the hospital (and approved by my insurance company) was pulled off the market.  The hospital then used a different brand of IVIG.  The insurance company noticed they were being billed for a drug they did not approve (because it had a different J code) and rejected the subsequent hospital claims as a “non approved” drug.   So far, I’ve managed to rack up about $200,000.00 of unpaid medical expenses.  The hospital wants to hold off any more infusions until this is “straightened out.”

Of course all of this will get resolved.  Eventually.  But I was due to have an infusion last week and now I don’t know when the next one will be scheduled.  I’m supposed to have them every three weeks.  On the bright side, the veins in my left hand are shot and my right hand isn’t looking too great either.  Maybe they need a little break from needles.  My doctor said I may eventually need a port in my chest.  I’m not too keen on that idea, either.  Ports are also on my “Things I’d Rather Not Do Right Now” list.

So I wait, not too patiently, for the phone call from the scheduling office for my IVIG infusions.  In the meantime, I hope my lupus doesn’t flare up.  I’ve given up trying to understand WHY this disease is so random and unpredictable.

Most of the time I can find a pragmatic way to cope, followed by a nice helping of humor to stay balanced.  But today I’m just tired and frustrated with this crappy disease.

The Circle Game

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Good things never last forever.  And bad things come and go too.  I’ve had a steady uneventful four months of relatively good health in the lupus department.  So it shouldn’t come as a shock to me when I see the obvious signs of a lupus flare starting to circle back again.  First it was about the kidney problem.  The nephrologist said I had lost some kidney function, but for now we will simply monitor the situation.  That was good news.  Now, I’m accepting the fact that the vascular rash that is the primary nemesis of my particular brand of lupus has returned.  The familiar cycle of hives on my face is, well, back on my face.  The small vessel vasculitis on my legs is slowly reappearing.  My arms, torso, back and thighs are affected again.  The stinging feeling on my arms and back has returned.

I have no idea why.  It just is what it is.  And the circle game begins again.

I’m diligently taking all my medications.  I get infusions at the hospital every three weeks.  I have a very long and expensive trail of paperwork that my insurance carrier sorts through on a monthly basis.  I’m an insurance underwriter’s nightmare.

So this is when I start trying really, really hard to be Little Miss Pragmatic.  This disease comes and goes in cycles.  It will probably get worse before it gets better.  And I have faith that the vasculitis WILL improve.

One of the most frustrating things about having lupus is accepting the cycles of feeling well and feeling ill.  I’ve had this diagnosis since 1992 and I still manage to get all pissy when I develop flares.  I get all snug and cozy when I get lucky enough to enjoy a pain-free, rash-free stretch of time.  Heck, I even start to feel …. dare I say it …. relatively normal!  And then I get blindsided when my autoimmune system starts to go haywire.  Again.  And again.

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For now, I will start back up chanting my “coping with lupus mantra” …..

I will stay out of the sun.

I will wear long sleeves.

I will not get overheated.

I will try to avoid stress.  (However, if anybody reading this knows a sure-fire way HOW to do this, please get in touch.)

I will tell myself that even though I may not look the way I want to, I’m still the same person on the inside.

I will rely on the strength of my faith, family and friends.

I will continue to pray for a cure.

I will tell myself that I am not my disease.

I will remember that living with lupus is a circle game.

Kidney Schmidney

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I thought my kidneys were working just fine.  According to my rheumatologist, not so much.   Like many people who have had lupus for a long time, I assumed that if after 18+ years of living with this disease, whatever bad stuff would happen would have already happened.  Assuming is never a really smart idea.  When my lab tests came back abnormal, I had to pee in a jug for 24 hours and send it off for testing.  Ick.

KIDNEY - MORE THAN JUST A BEAN

So now I’m going to a nephrologist later this week to learn more about lupus nephritis, which is possibly the culprit that has decreased my kidney function and thrown my laboratory studies out of whack.

I hate it when that happens.

The thing is, I know absolutely NOTHING about kidney disease.  I’m well versed about skin disorders, gastrointestinal disease, heart conditions, and a bunch of other stuff, but understand zero, zip, nada when it comes to those bean-shaped filters.  That will all change by the end of this week.

One of my brothers will be going with me to see this doctor.  I’m very grateful for his support and medical knowledge, as he is a nurse.  Otherwise, I would probably be sitting through the appointment in a fugue state, hearing the doctor say “Blah, blah, blah kidney.  Blah, blah, blah ultrasound.  Blah, blah, blah biopsy.  Blah, blah, blah come back in 6 weeks.”  That’s pretty much how I’m currently coping with the situation.

Symptoms of kidney dysfunction are pretty nondescript and vague.  Frequently urinating?  Check.  Blood in urine?  Nope.  Froth or bubbles in urine?  Check.  Swollen hands and feet at the end of the day?  Of course.  I’m female in my mid 50’s … it happens.

For now, the most effective way for me to deal with this new wrinkle in my journey with lupus is to watch the Olympics, go to work, tune in to American Idol this week, get my IVIG infusions every three weeks and continue playing Farmville.  In other words, carry on as usual and don’t think about it too much.

I can’t wish this away, so I might as well live my life. Right?

Good thing I’ve met my deductible this year.

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!

Great News For LupusRanting

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The other day I received an email with some outstanding news.  LupusRanting was approved as a new member of the Healthcare Blogger Code of Ethics network.  Whoo Hoo!!

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The Code was established in 2007 to provide bloggers and their readers with clear standards in five specific areas:

Perspective: The blog author’s perspective should be clearly established.

Confidentiality: Patient identity is respected.

Disclosure: Bloggers must clearly disclose whether they are paid to pitch products.

Reliability: Sources for information should be cited.

Courtesy: Personal attacks should not be permitted.

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About the Code: The Healthcare Blogger Code of Ethics was designed in response to problems experienced by medical bloggers.  The goal of this Code is twofold:

1.  To give readers of a medical blogger a clear idea of the standards by which the blog is maintained.

2.  To give bloggers (especially anonymous ones) a clear set of guidelines they can show employers, patients, or other concerned parties as to the nature of the blogging.

“Since healthcare blogging is sometimes dealing with extremely sensitive information, it is important that these blogs maintain a high level of integrity.”

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LupusRanting is grateful to the team at HBCE and other members who do their best to make healthcare blogs a valuable resource for patients, caregivers and others interested in fighting specific medical conditions, or improving health care in general.  I’m proud to display the HBCE logo in my sidebar and will continue to work hard to maintain the standards promoted by the Code.

I know it’s not the People’s Choice Award, an Emmy or an Oscar, but I’m thrilled to be on the short list of bloggers who have received this honor.  Many thanks to all of you who take the time to read and comment on my posts!!