Tag Archives: Coping

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.

Living In Harmony

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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.

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.

The Up Side of Lupus

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Having lupus doesn’t mean I’m out of options to live a full life … at least most of the time.   And there are plenty of things I don’t have to worry about.

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1.  Even though all my siblings and both  parents had some form of skin cancer, I most likely will not get it.  My skin is fair and I totally avoid the sun.

2.  I’ll never have a skiing accident because sun, glare, and cold keeps me off the slopes.  However, I’ll join you for a drink in the lodge any time.

3.  Don’t have to cut the grass in the summer because it’s too hot.  Then again, I live in a townhouse anyway and somebody else deals with the yard.

4.  I get to indulge in at least 8 hours of sleep a day.  Plus naps.  Honestly, if I couldn’t get this much sleep, I’d be a walking zombie.

5.  If I can’t remember something, I blame it on lupus fog.  It’s more interesting than just getting old and forgetful, don’t you think?

6.  Do I have to schlep tons of groceries from the store, to the car, to the garage into the house? Not if I’m not up for that.  Delivery when the weather is fugly is totally cool and worth every penny.

7.  Having an autoimmune disorder can work to your advantage during the holiday shopping season.  Given all the immune suppressing drugs I’m on, I’ve become a germ magnet.  No Target.  No malls.  No Home Depot.  Shopping on line is not only heavenly, it keeps me in the Christmas spirit.  No more parking lot fury over the idiot that took my spot!

8.  On those days or nights when I’m staying home because I’m too tired to go anywhere, I usually remember the consequences of pushing too much and not being able to walk the next day.  Given the choice, hanging around the house doesn’t seem so bad.

9.  Long sleeves!  At the risk of sounding ridiculous, long sleeves cover up not only middle age arms, but also bruises and vascular rashes.  And clothes with a UV rating of 50+ do a super job of protecting the skin!

10.  Last year I tinted my car windows.  I can drive anywhere without worrying about the sun.  Plus my car stays cooler in the summer and warmer in the winter.  If not for lupus I probably wouldn’t have my car pimped out so nicely.

11.  This may sound strange, but meeting other “lupies” on-line or in-person is good for the soul.  There is strength in numbers and knowing you’re not alone is always a comfort.

12.  I’m fortunate to have a local Lupus Foundation of America branch in the city where I live.  Any local chapter of the LFA can be a great resource for living well with lupus.

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Sure, having lupus is a drag.  But there’s an up side to everything.  You just have to look for it.