Category Archives: Ranting

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.

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.

Trust The Process

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There’s nothing like a enormous, old-fashioned calamity to get my creative mojo in maximum overdrive.

Last month I experienced a big one.  I lost my job of 18 years.  Holy crap!  Don’t ask me about the details.  Trust me, you don’t want to know.

I took the news on the chin, packed up my office, drove home and crawled in bed.  Then I proceeded to cry, scream and freak out in more ways than I thought humanly possible. 

Fortunately, with the support of friends, family, wine and miscellaneous drugs, I avoided a trip to the crazy farm.

Still, I was left with quite a challenge.  How is a middle aged woman with lupus, who has an extremely photosensitive skin condition, chronic joint pain, increasing cognitive dysfunction, kidney damage, central nervous system deficits, anemia and minimal physical endurance going to find a well-paying job?  How is she going to find a job that allows her to be absent from work every three weeks so she can go to the hospital for day-long infusions?  How will she pay her bills and health insurance premium?

A life of crime had too many start-up costs.  And I didn’t want to cash in my vast fortune of inherited wealth.

Instead, I decided to trust the process.

Sometimes, you just have to rely on optimism that even if your life seems like it is going down the toilet, it probably won’t. Change is hard.  Life isn’t fair.  Having lupus sucks.  Being unemployed sucks even more.   However, I firmly believe there is a process that will keep me resilient and open to all these changes, as long as I have a little faith.

I’ve spent the last six weeks spinning a lot of plates.  I filed for unemployment and got my resume updated.  If I can find a job where I can work in incandescent light, take frequent breaks to rest, accommodate a zillion doctor appointments, be relatively stress free, and make enough money to afford increasing medical expenses … great.  But I also applied for disability because my health limitations are pretty crazy and aren’t going to miraculously evaporate any time soon.  Realizing I can actually qualify for disability is hard to accept.  My doctor had a great way of explaining my stress, health and work challenges and living with lupus.  She said “just because you can drive yourself to the office doesn’t mean you can actually do your job.”  Mind you, I haven’t turned into a full-fledged nut case but check out this work-related-stress site called Cubicle Freak Out.

Trusting the process involves realizing your limitations, emotionally and physically.  And I have an ever-growing list of both.

Trusting the process also means that if you’re lucky, people will help you get through the bad times, as well as celebrate with you when life is good.

Trusting the process helps prioritize what is truly important. And I’ve come to understand that it isn’t about where I live, or what I may or may not do for a living.  It isn’t how much material stuff I have accumulated or what kind of car I drive.

Trusting the process is realizing that my overall health is my biggest priority.  I want to live long enough to enjoy my family, friends and future grandchildren.

To that end,  I will soon be moving to another city and live with my sister.  I was eight years old when she was married and left home, so this will be a new adventure.   I’m grateful and looking forward to sharing her big house, her patio, her garden and most of all, her company.  I’m hoping to devote more creative time to blogging, photography and painting, making jewelry, cooking and helping my sister manage her home.  My sister is such a blessing!

Life is not a static experience.  One day I lost my job and before I know it, I’m starting over in a new city.  And once again, living with lupus has changed the quality of my life.

Trusting the process does make a difference.  Try it.

Talking Trash

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My cell phone went missing Monday evening.  After a couple hours of fussing over “what-the-hell-will-I-do-if-I-can’t-find-my-phone” I decided it would turn up if I didn’t try so hard to look for it.  I stopped looking because I’m so very optimistic about expecting happy endings.

That didn’t work.

So I went to my office the following day, filled with absolute certainty that by the time I got home I would find it.  That didn’t happen either.  Rats!

I hate to admit being dependent on a cell phone but alas, I am.  Really.  Dependent.  My virtual universe is loaded on my iPhone.  Pictures, applications, maps, appointments … the works.  Of course I could get another cell phone if this one was truly MIA forever.  But what a hassle!

After muttering to myself when I returned home from work  (and creeping the cats out in general) I decided to try a different search method.  I started calling my phone, room by room, from my land line in the house.  Called the bedroom.  No answer.  Called the basement.  No answer.  Went to the garage and called the car.  No answer.  No ringing.  No nothing.

Finally, I went to the kitchen and called.  Nothing.  However, the stovetop fan was on because I was trying to make dinner, so it turned it off to listen.  Oh yeah, I was expecting some friends over for dinner to watch American Idol and was also rushing around cleaning up at the last minute.  I’m the queen of multi-tasking … dinner, vacuuming, table setting, and cell phone searching.

But I digress.

Finally, FINALLY, I hear a muffled “ring ring” (like the old fashioned phones) coming somewhere near (or under) the sink.  OMG!  It’s in the trash can!

The trash can that is filled with the most god-awful, gross food crap you could imagine.

I grab a new trash bag and start pulling junk out of the trash can and into the new bag.  One by one, I pulled out chicken bones, which really excited the cats.  They gathered ’round me sitting on the floor, as if they wanted to help search.  Cats are such fake-out artists. I knew they were only interested in potentially plundering some chicken parts.  There were multiple other gross things discovered in that icky bag, including some leftover cake batter, that I had to maneuver around.  It was tricky business, indeed.

And let me just say that when you are exploring the contents of a trash bag and if you happen to come upon a lot of  discarded red velvet cake batter in a hasty manner, your kitchen is poised to look like an episode of Dexter doing what he does best.

I did just that and it wasn’t pretty.  Unless you like to watch autopsies.

I was praying to the patron saint of kitchen cleanup to help me find this stupid phone and restore my kitchen to glistening cleanliness before my friends show up and find me splayed out on the floor digging in the trash, looking like I lost my mind.  Which I probably had at that point.

But to my horror, I STILL couldn’t find the phone.

Now I have 2 big trash bags half filled with crap. And no phone.

So I called my cell phone again.  This time I separated the bags so I could tell which one was ringing.  Did I mention that it is harder to locate missing cell phones in dark trash bags, as opposed to light colored trash bags?  And I’m not profiling anything here.  It’s just the plain truth.

Finally.  I find my phone, covered in butter, cake batter, indescribable fuzz, and a random chicken bone sticking out of the side of it like a fake antenna.

But Lordy, it was still ringing!

The cats left the kitchen, quite disappointed.  I hastily bagged up the second trash bag, washed the floor, cleaned up my iPhone and the case, set out the fruit plate and hummus, washed my hands, put on my pearl necklace and apron and was ready to great my company with no evidence of the insanity I just barely survived right before they knocked on my front door.

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Yep.  Tuesday night, nobody knew about the riotous cell phone incident.

Until they read this post, that is.

Whatever It Takes

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Carry on.  Keep your wits about you.  It could be worse.  One day at a time.  Stay optimistic.

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Trite and banal?  Yes.  But this type of self-talk is what works for me right now.  Doing whatever it takes to stay functional in my little world is what I need to do.  Health problems.  Money problems.  Car problems.  Family problems.  Lord knows we all have them.  And my little collection of the aforementioned stuff seems to be ramping up just beyond my usual level of tolerance.

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I haven’t been blogging regularly.  My intention is to get back on track and write more often.  Some things (like writing) I don’t miss until I stop doing or seeing or experiencing them and then out of nowhere, I realize, “…Hey, what the hell happened to LupusRanting?  Did she vanish?  Win the lottery?  Wind up on a milk carton?  WTF? …”

For those of you who stop by regularly, thanks for stopping by regularly.

Me and my bad attitude aren’t going anywhere.  For now.  Whatever it takes to carry on.

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.