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

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 ….

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

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.

Goodbye 2010

What will the new year bring us?  Last year was pretty busy.    In no particular order, I

1.  Bought a new car.  Good times.

2.  Lost my job.  Bad times.

3.  Moved to a new city, Cape Girardeau, Missouri.

 

 

 

4.  Started a small (yet modestly successful) business designing and making jewelry.

5.  Reconnected with a great friend from high school.  Hi Maria!

6.  Traveled to North Carolina for a family birthday celebration along the Laurel River.   Sublime!

 

 

 

7.  Traveled to Wisconsin and celebrated Halloween with my son and daughter-in-law.  We also went to a rock shop, and visited the Audubon Society nature preserve where he works.

8.  Read 8 books.

9.  Accomplished a lot of virtual farming in FarmVille.  Belted cows are a very good thing.

10. Lost 38 pounds.

11.  Took a class in wire wrapping.  Used one of the rocks I bought in Wisconsin.

 

 

 

 

12.  Nursed a very sick cat back to health.  Charlie used one of his 9 lives.

13.  Made 15 trips to the hospital for immunoglobulin infusions.  Yeah St. Louis University Hospital!

14.  Photographed orchids, children, trees, animals, jewelry, and heaven knows what else.

 

 

 

15.  Applied for social security disability and was approved on the first try.

16.  Successfully avoided unhealthy exposure to the sun and UV light.

17.  Witnessed first hand the damage and devastation of a F3 tornado.  This one was on New Year’s Eve.  A 50 ft. white pine tree uprooted and crashed through my ex’s home.  Nobody was injured.

 

 

 

18.    Adjusted to life out of the fast lane of full-time employment.  That was a challenge.

19.  Celebrated my sister’s retirement.  Actually, we’re still celebrating.

20. Learned not to feel guilty about getting 8-10 hours of sleep every night.

All in all, after a rocky start and a scary ending with a tornado, 2010 wasn’t too bad.  This year I’m looking forward to a less stressful life, managing my health and living with lupus in the slow lane.    Despite everything I remain optimistic and determined to live in the present.  Stay tuned.

Living In Harmony

Here I am, living the good life as my sister’s housekeeper while waiting for my social security disability checks.  I’ve read a veritable mountain of books this summer.  The house is clean, the laundry is folded, the plants are watered (most of the time) and the stress factor is manageable.  Still licking my wounds, so to speak.  Still dealing with lupus.  Still trotting off to the hospital every three weeks for IVIG treatment.  It could be worse.

However, I need to do something productive, creative and profitable.  So I decided to design and make jewelry.  I had the basic tools and materials, as I toyed with the idea a couple years back.  At the time, I made bracelets and earrings for Christmas gifts.

Living without a paycheck is a great motivator for thinking outside the box.  I have plenty of skill sets in a traditional work setting.  But my life is no longer what I consider “traditional.”  So after a lot of soul searching, I decided to launch my little jewelry making enterprise.

My business is called Harmony Beads.  “Jewelry in tune with every occasion.”

I know absolutely NOTHING about the jewelry-making business, but I’m a quick learner.  So far, I’ve managed to enter into a giant art fair in November, sell a few pieces to some friends, and sign up for a wire wrapping course at the university.  My sister, bless her heart, is hosting a jewelry premier party in October.  We’re serving wine and I hope everyone drinks and spends money.

In the meantime, I spend most of my time working at the dining room table where the light is good. I bought a stronger pair of reading glasses for obvious reasons.  I love making jewelry. The design inspirations are endless.  It fulfills my need for creativity.  The final products are tangible and satisfying without any calories.  There’s something fantastic about making something and being pleased with the results of your creation.  It’s akin to the joy having children without the hassle of raising them.

My cat Tigger usually keeps me company.  He likes to lay on paper and plastic things.  He also waits around to chase the occasional “flying bead” when I knock something over.  Last Saturday night he hit the jackpot when an entire tray of pearls spilled all over the floor.

I’ve managed to stay out of the pool halls and biker bars.  So far.

If this little enterprise takes off and does well, I’ll be a happy camper.

Mixed Blessings

My Social Security Disability application was approved.  I’ve been told that only 30% of  first-time requests are granted disability payments.  I’m obviously relieved and grateful to qualify for social security.  My initial reaction to all this news was something like … “Great, I’m approved for disability!”;  followed by … “Crap, I’m approved for disability!”

Millions of people live with an invisible illness, like lupus.  Many have full-time jobs.  I’ve had lupus since 1992 and worked until this spring.   And that’s a weird situation for me.  It is challenging to accept the realization that I have serious health issues.  In my head and heart I’m the same person I was four months ago.  I certainly look the same, except for a 30 pound weight loss.  My laboratory studies, on the other hand, are seriously messed up. And every three weeks I’m in the hospital for immunoglobulin infusions because my doctor believes that aside from a very unlikely stem cell transplant, IVIG is my last treatment option.  But to look at me, I’m just your typical middle aged white woman.

Regardless of what happens in our life, living with mixed blessings is part of the package.  I’m lucky enough to qualify for social security.  So many people are less fortunate and have to juggle unemployment, disability, and poverty.  I’m one of the lucky ones that can afford health insurance and have a supportive family.

My life is certainly less stressful.  I take care of most of the household chores and errand-running.  My days are filled with tasks like folding laundry, watering the plants, making jewelry, preparing dinner, and writing this blog.  I promised my sister that I would be her bitch around the house.  So far, it’s working.

It would be wonderful if my lupus went into spontaneous remission.  It would be wonderful if I had the stamina to work again.  In the meantime, I’m counting my mixed blessings.