Category Archives: Expectations

You Better Not Cry

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Like the song says, ” … you better not cry.”  In a perfect world, I would take my own advise.  Earlier this month I wrote about all sorts of great ways to stay sane during the holiday season.  I also said that there was no such thing as a perfect Christmas, a perfect family … blah, blah, blah.

And it makes sense.  On paper.

So, of course I was caught off guard when I had my Annual Christmas Meltdown the other day.  And it was a beauty.

Drama. Tears. Angst. Unrequited crap.

My Annual Christmas Meltdown

How does an otherwise relatively normal person lose their mind, freak out over all things related to the holidays and have the expectations of a four-year-old during the Christmas season?

You tell me.

At least this tantrum lasted a short time.  And I’m so over it now.

My inner four-year-old is still there, but I gave her some chocolate so hopefully she’ll shut up and behave.

Eating chocolate (in moderation) will take your mind off just about anything that is unpleasant or frustrating about the Christmas season.  Plus it’s a lot less expensive than therapy or SSRI’s.

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The December Rush

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I hate Christmas shopping. Don’t get me wrong. I honestly like the Christmas season and look forward to spending time with family and friends. However, being in a crowded store with maniac shoppers is enough to throw me into a crazy lupus flare. And yet, somehow I found myself in one of the big box stores the day after Thanksgiving, with my son, looking at flat screen televisions. And the stupid thing about that was knowing he wasn’t going to buy anything. However, the other nine million people in the store were going nuts with their credit cards. I hope their retail therapy experience made them happy, bless their hearts.

Nothing is worth standing in line outside, in the dark.

Yeah, let's all stand in line outside and wait for the store to open!

The December Rush is upon us.

Black Friday.

Cyber Monday.

Panic shopping at the last minute for gifts we weren’t going to buy but now feel we must.

Some of us (not me) are compelled to bake enough cookies to feed a small country.

Are you suffering from the symptoms of The December Rush? If so keep reading, because during this time of the year, I’m all about slapping some common sense into your head in BEFORE you get carried away.

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#1 Do you really want to stand in line to buy stuff? Of course you don’t! Standing in line only makes you more tired. Pay somebody 5 bucks to shop for you. It’s worth it. Better yet, shop on line.

#2 Does old Aunt Myrtle really need your homemade peanut brittle? Not if she wants to keep her teeth. Buy her something soft … like warm, fuzzy socks … from the drug store, where the checkout lines are short.

#3 Don’t be afraid to give people The Gift of Disappointment. It’s free and they will get over it.

#4 You know what else is free? Driving around and looking at Christmas lights. It’s fun and you’ll have the satisfaction of knowing that YOUR electric bill won’t be as high as the guy whose house looks like it’s on fire.

#5 Wash your hands. Sleep 8 hours a night. Drink plenty of water. It’s easy to get sick when you’re stressed out and heaven knows you don’t have time to be sick in December.

#6 Try to not get sucked into the vortex of buying a Lexus with a big bow on it. Or a puppy with a big bow on it. Who does that? Really?

#7 Wine is a good thing. Not to be confused with whine, which is terribly overrated.

#8 Sing Christmas songs. And if you can’t sing well, sing anyway. Singing lowers your blood pressure.

#9 Remember that you are not perfect, the world is not perfect, your family and friends are not perfect, and there is no such thing as a perfect Christmas.

10. If you think you’re going to lose your mind over the holiday pressure, go right ahead. Everybody is entitled to a meltdown now and then.

#11 December lasts only 31 days. Eventually spring will come, which is what I really look forward to enjoying.

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.

 

 

 

Safe Harbour

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safeharborWhen you live with an autoimmune disease like lupus, your overall health and well-being is usually in an ongoing state of flux.  I don’t expect to feel crummy when I wake up in the morning.  I never take for granted the days without complications or reminders of my limitations.   Some days, however, I wish there was a safe harbor where I could go for rest, comfort, love and reassurance.  Life with lupus is often an unpredictable crap shoot.  And the long-term odds are never on the side of the  patient.

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A good day for me is when the medicine is working, pain is manageable, the weather cooperates and the mind is untroubled.   Most of the time I am optimistic.  Most of the time I am fully engaged in the here-and-now.  Most of the time I can laugh about almost anything, especially myself.  I feel creative, energetic and productive.  When I can reach out to help someone in need, I am acutely aware of the blessing and grace that enables me to give.

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There are other days when I feel vulnerable and exposed.  Today is one of those days.  I hate the way that makes me feel.  I resent feeling weak.  I walking with a limp.  Anemia gives me a pasty complexion.  The cutaneous vasculitis lesions continue a slow, persistent march across my torso and extremities, despite all the drugs and all the infusions.  I have bruises in unexpected places, courtesy of steroids.  Chemotherapy and steroids have taken their toil on my appearance.  Sometimes I feel as dumb as a box of rocks …  “lupus fog”  caused by small vessel vasculitis or middle age or heaven only knows what else.  I see all too clearly the downward slide of  my baseline health and it scares me.

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I often wish for a safe harbor; a loving partner who would comfort and reassure me during storms caused by lupus.  I hear stories about how spouses pair up for doctor appointments or keep watch at the bedside of their loved one in hospitals.    Someone who keeps their promise in good times and bad.   A partner who is willing to  clean and shop when the other one is too sick to handle it alone.   What does it feel like to be loved for who you are, with or without a chronic disease?  Will I survive without this type of love?  Of course.  Would it really make a difference when lupus has the upper hand?  I wish I knew.

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There are other types of safe harbors in my life … my home is often a refuge.  I love to read and can easily get lost in a good story.  When I’m buzzed on steroids, I often set about cleaning out dressers and drawers.  I don’t take my friends for granted and truly enjoy the safe harbor of their company.  For years, I have spent quiet weekends at home, and don’t think about the fact that I’m alone.  But on bad lupus days when it’s painful to walk and getting out of bed is a big ordeal, I wish my life was different.  I wish it wasn’t so hard to reach out to people instead of opting for self-imposed isolation.  I don’t want to expose my insecurity.  This is my pattern when lupus has the upper hand.  Maybe there is no such thing as a safe harbor when I feel like crap.

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I have insecurities and fears, just like everybody else.  I am also a strong, intelligent, independent woman who appreciates the blessings in my life.  I’ve been divorced, unemployed, raised a child on my own and started my life over more than once.   And I have faith to keep trying.

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I have lupus.  And some days are not easy.

30 Things About My Invisible Illness You May Not Know

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invisible illness

I’m posting this Meme in support of  National Invisible Chronic Illness Awareness Week.

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1.  The illness I live with is: Systemic Lupus.  I also have Sjogren’s Syndrome, autoimmune hypothyroidism, and fibromyalgia.

2.  The year I was diagnosed was: 1992.

3.  I had symptoms since: I was 9 years old.  Nobody knew what was wrong with me at that time, except I was anemic and tired.  In 1989 I began experiencing additional symptoms that went undiagnosed for several years.

4.  The biggest adjustment I’ve had to make is: Accepting my limitations, avoiding sunlight and knowing that my health is tenuous, at best.

5.  Most people assume: That aside from gaining weight (from years of chronic steroids) I look relatively healthy.

6.  The hardest part about mornings are: Not knowing if I will be able to move without pain.

7.  My favorite TV medical show is: House … mainly because it’s smart and funny.  But also because according to Dr. House “It’s never lupus.”

8.  A gadget I couldn’t live without is: Well, it’s not really  a gadget, but I couldn’t live without my sunglasses.  I even have tinted glasses to wear inside when my eyes are really bothered by certain lighting.

9.  The hardest part about nights are: Being in pain and having difficulty falling to sleep.  Feeling alone and isolated.

10.  Each day I take: 14 pills in the morning and 6 pills at night.  And every three weeks I go to the hospital for infusions that take all day.

11.  Regarding alternative treatments, I: would like to try acupuncture if I could afford it.  Therapeutic massage is beneficial when my skin isn’t combating vasculitis.

12.  If I had to choose between an invisible illness and a visible illness, I: have had both and would like to have neither.

13.  Regarding working and career: I’m just trying to hold on to the job I have now.  I used to think I had a career when I was in my 20’s and 30’s.  That was a while ago.

14.  People would be surprised to know: the amount of time and energy it takes to do what used to be routine things in life, like grocery shopping and cleaning.

15.  The hardest thing to accept about my new reality is: there is no cure for my disease.

16.  Something that I never thought I could do with my illness that I did: was be able to travel.

17.  The commercials about my illness: do not exist.

18.  Something I really miss doing before I was diagnosed is: Spending time outdoors in the sun and swimming!

19.  It was really hard to give up: my independence.  There are certain things I just can’t do and have to ask for help.

20.  A new hobby I have taken up since my diagnosis is: Blogging about having lupus!  Also knitting AND painting.  I’m a beginner at both but thoroughly enjoy the creativity and challenge.

21.  If I could have one day of feeling normal again, I would: spend the day at the beach, walking along the shoreline and searching for sea glass.

22.  My illness has taught me: patience and humility.

23.  Want to know a secret?  One thing that people say that gets under my skin is: “You look so good today!  You must be feeling better!”

24.  But I love it when people: ask if they can help, make me laugh, and let me help them when I can.

25.  My favorite motto, scripture, or quote that gets me through tough times is: “When you get to the end of your rope, tie a knot and hang on!”

26.  When someone is diagnosed I like to tell them: You are not alone.

27.  Something that has surprised me about living with an illness is: how many people expect you to carry on as if you had no limitations.

28.  The nicest thing someone has done for me when I wasn’t feeling well was: More things than I can list!  I am blessed with kind, thoughtful and caring family and friends.

29.  I’m involved with Invisible Chronic Illness Awareness Week because: I have systemic lupus and want to raise awareness about not only my disease, but about all invisible and chronic illness.

30.  The fact that you read this list makes me feel: very grateful!  Thank you!

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Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers September 14-18,2009 at www.invisibleillness.com

The January Funk

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Last weekend I tossed a few things in a suitcase and drove the 93 mile trek to spend the weekend with my sister.

I could feel a January Funk coming on and wanted to shake it off.   My choices were to just give in and let it happen or DO SOMETHING before I morph into the Funk.  We went to the movies, and watched a few more at home.  I caught up on some sleep.  We went to church and drove around town a bit, ate in and ate out.  I came back home on Sunday to do laundry and get ready for a busy work week.  All in all, it was a very relaxing weekend.

Somehow, the Funk came anyway.

When I’m not feeling well mentally or physically, it’s hard to determine  whether my problems are  Lupus-related or something else.  Maybe it’s my medicine causing goofy side effects.  Or not.   I’ve had a cold for the past 2 weeks and my immune system is not strong.  I also have central nervous system involvement with Lupus that sometimes messes with cognitive skills … like feeling totally clueless at times, having trouble concentrating, depression, aphasia, etc.  Most people have these issues from time to time too, so I never know if it’s me or Lupus.

January is cold and dreary.  Heating bills are extra extra high in January.  Spring seems a lifetime away in January.  I’m homesick for my son in January.  Plus, my hair is growing back and looks like I dropped acid and decided to cut it.  My parents had birthdays in January and I miss them even more during that time.  To top things off, the immunoglobulin infusion that was supposed to start in November is still in limbo with the insurance company and my doctor trying to reverse the denial.  I really don’t want to go through a plasma exchange (which IS covered by insurance), but that would be the next step.  I’ve had that whole scenario in the back of my mind for months and feel like a ticking time bomb, waiting for my crazed and confused immune system to go into another lupus flare-up.

Time will pass and things will get better … it usually does.  But for now, today, I feel the Funk.

Life Lessons of 2008

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I’m not big on making resolutions.  I do like to reflect on the year each December.

2008 has taught me many things.  Here are the most important ones.

#1.   Obtaining competent and compassionate health care is my responsibility. I’m just one of millions of people that have lupus.  If I took a passive stance about managing my life with this disease I think I’d be in a mental institution by now.  This disease is complicated and no two people suffer with identical problems.   In 2008 I managed to change rheumatologists, obtain second opinions from dermatologists, investigate alternative care therapies, and transferred off-label lupus medications to a specialty pharmacy.  I researched clinical trials about photosensitive skin disorders.  I was prepared to go to Johns Hopkins to see the director of the Lupus Clinic.  I was relentless.  I was also incredibly frustrated. I cried a lot.  I saw my therapist on a regular basis.   This year I started being my own case manager. Lately, I have trouble remembering what the doctor tells me, or what issues I want to discuss when I have appointments.  Now I ask someone to go with me to be my eyes and ears.  I demand excellent health care.  And even if I get upset, angry and cry, I will not let anything stand in my way of getting honest answers and viable treatment options.

#2.   It takes time to recover from unrequited love. As a matter of fact, it takes time to realize you’re hoping for the impossible.   I don’t know if I’ll ever be capable of trusting someone with my heart.  But  I will heal.  And it will take as long as it takes.

#3.   Writing this blog has been a joyful experience. I’m no Dorothy Parker or Ann Raynd, but I do love to write.  Writing gives me clarity and great joy.  I’m amazed by the support received from friends, strangers and fellow bloggers.  Whether I’m writing about lupus or life in general, being able to connect with people who relate to these posts has been an enriching and positive experience.  It’s opened up a new world for me and I’m grateful!

#4.  Less is more. Less rooms to clean gave me more time to read … or write.  Less stress at work lowered my blood pressure.  Less debt this year allowed me to have more fun spending the money I do have!  Less useless crap in my basement is a blessing.  Less prednisone means healthier bones, less dizziness and less bruises.

#5.  I still have time. I hope to have years to fill with wonderful, enriching experiences.  There are friendships to enjoy and babies to rock.  I will travel.  There is music to listen to and good books to read.  I still have time for long lazy summer days, sitting in the shade at the water’s edge and breathing in fresh air.  There is much to learn.  There are many things to write and rant about.

#6. I am not my disease. That’s the long and short of living with lupus.

I wish you the very best in the coming year!