Category Archives: LIFE

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.

Goodbye 2010

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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

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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.

Boxes, Bins and Flowers

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One week from today I’ll be living in another city.  I’m up to the task of moving and the adventure that comes along with it.

The Moving Tower of St Louis

The Moving Tower of St. Louis

This week I had a semi-surprise goodbye party hosted by The Ten-Thirty Singers, a church music group I’ve been singing with for over 25 years.  Today I enjoyed a goodbye lunch with some great gal-pals … the PMS Girls (which stands for Peggy, Pam, Mary Anne and Sue).  Nothing like a 3 hour lunch on a Saturday to motivate you to take an afternoon nap.  I’ve been toasted, gifted, regaled with flowers and hugged to the max!

Next week I am hosting several packing parties at my place.  Amazing the things some people will do for a free lunch.

Boxes and bins are my new best friends.  I’ve acquired quite the selection of plastic bins with locking handles.  I even went so far as to delegate colors for certain rooms.  The pink ones are storage, blue for my bedroom, green handles for dining room, and purple handles for linens.  They stack and won’t fall apart.  They will never end up in a landfill because I like them too much, so in a way, I’m “going green” … or pink or blue.  I never thought I’d be one of those people who color coded anything.  I used to laugh at them.  Now I’ve become one of them.

At first I was strolling down memory lane while sorting all my worldly goods.   I was getting nothing accomplished.  Now I am ruthless about what stays or goes.  Goodwill has been happy to see me recently.  What I don’t keep is going to charity.  I have no patience for selling stuff on Craig’s List.

Surviving a move when you have lupus or any chronic illness is a tricky little game to master.  So to keep sane I work in small increments of time, sandwiched with a bit of  rest, like writing this post.    I try not to do more than 5 hours of work a day.  Hopefully, my joints will not protest and my vascular problems will remain quiet.   You won’t seem me outside much on Moving Day.  It will be hotter than hell and I will have the assistance of my son and a couple of his strong high school buddies doing all the lifting and shoving.  Having physical limitations can come with some benefits, such as help from others and I have no problems letting people move heavy stuff.

I did have a bit of a situation while cleaning last week.  I kept smelling something yucky in the living room.  At first I thought it was food or cat barf but the smell wasn’t constant.  Then I thought that maybe it was ME, as I was sweating up a storm and was possibly stinking up the house.  Finally, I decided to move the furniture around to look for the source of the by now, rancid smell.  So under the couch I found the source of the problem.  A dead bird.

Natural born killers?  Not so much.

Natural born killers? Not so much.

I immediately grabbed some paper towels, threw it out, and fumigated my house. Then I started wondering just where in the hell did it come from?  I mean really, how did it get inside my house?  Did the cats kill it?  If they did, why didn’t they eat the damn thing?  That’s what cats are supposed to do.

My only concern with the cats at this point is the 2 hour drive to another city.  They are not fans of cat carriers and car rides.  I’m expecting them to howl and shed all the way to Cape.  Who knows what will happen when we arrive at our new home.  Stay tuned.

I’ve moved a total of nine times in my life, most of them as a single mom.  By my standards, that’s a lot of moving, but I know people who have moved a lot more than that.  Moving sucks, but on the other hand, if I lived in one place all these years I would have accumulated too much stuff.  At least moving forces me to clean up and throw out. And by now, I’ve learned a thing or two.

One, get yourself some bins and forget the boxes.

Two, if you must use boxes, go for the paper boxes with lids. 

Three, don’t pack everything too soon, or you’ll be digging through your kitchen stuff to make dinner, like I’m doing tonight. 

Four, hang on to wrapping paper … my friend MaryAnne gave me 5 enormous bags of white paper left over from her move a couple years ago.  What a lifesaver! 

Five, and this is the most important, let people help you.

When the dust settles, I’ll start blogging again and fill you in on the details of my great adventure.

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.