Category Archives: hope

Mixed Blessings

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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.

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Life in Cape

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Life in Cape

The moving expedition to Cape Girardeau was crazy.  Note to self … moving on the hottest weekend of the summer is not a good idea.  However, I had no choice.  Armed with the physical and emotional help of friends, family, cold bottled water and the welcoming arms of my sister, I started a new chapter of my life.

The procession of boxes going in and out of my house seemed endless.

Almost reminds me of a procession of bridesmaids.  Except for the boxes.

The best photo-op came when my queen size box springs was taken out of the bedroom via the balcony, as it was too big to fit thru a narrow stairwell.

At the end of a very, very hot and sweaty day the crew was happy to pose for a picture.The Moving Crew

I’ve been in Cape  for a month.  Living with my sister is great.  We have established a routine of sorts, and my days are productive.  When I’m not taking care of the house, I’m busy making jewelry, which   I’m planning to exhibit my work at a local arts and crafts fair in November and am designing all sorts of fun earrings.  In a couple months I’ll host a wine and cheese “premier party” for my jewelry line, called Harmony Beads. At some point, I’ll have a Facebook page for Harmony Beads that will feature more inventory.

Designing and creating jewelry at home provides me with a creative outlet. It’s a very lupus-friendly activity. Because I have lupus, working at home lets me control my environment, especially when it comes to temperature and light.  I’m also able to take breaks when I am tired, and get up and move around when my joints get stiff.  These type of accommodations are not typically found in a traditional work setting.  In the meantime, my sister is providing me a home.  I am able to contribute somewhat with my unemployment check.  I should find out about my disability application soon.

Change is hard.  I didn’t ask to lose my job and move to another city, but I’m dealing with it. Every three weeks I return home to receive IVIG infusions and visit with friends.  I now have the opportunity to travel and visit my son in Wisconsin, my brother in Colorado, and my niece in North Carolina.  I may be unemployed and living with lupus, but I’m a tough cookie.

So many things in life are out of my control, yet I remain optimistic.  Lupus will continue to throw me some nasty curve balls, but I work hard at being thankful for the blessings and abundance in my life.

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.

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.

Stopping Steroids … Finally

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For the past 10 years or so, I’ve been on prednisone.  Most people that have autoimmune disease wind up taking steroids.  The lucky ones can be on them for short periods of time.  The not-so-lucky … like me … require high doses for long periods of time to keep their immune system in check.  Sometimes, I’ve been on 80 mg a day for months and months, and months.  Ick.  My hair gets brittle, my skin thins out like tissue paper, I develop bruises everywhere, and worst of all, I get a little crazy.  Can’t sleep.  As a bonus, I get this voracious desire to eat anything that isn’t tied down or locked up.  But the best is the paranoia that is known to set in with high doses. You could call me a little nutty because occasionally, I am certifiable.

I’ve finally … FINALLY … taped completely off these evil little pills.  At this point in my disease, other medications, most likely the IVIG infusions I get every three weeks, are taking the lead and keeping most flare ups at bay.

Stopping steroids isn’t easy.  If you taper too quickly  (as I have done more than once), you can easily find yourself dealing with adrenal insufficiency.  Basically, it feels like you’re having a heart attack and are about to die.  If you stop completely (which I have not attempted) you can go into adrenal crisis, which can be life threatening.  My taper regimen took about three months, once I got the go-ahead from my rheumatologist.

Long term use of steroids can cause all sorts of damage.  It can cause permanent bone loss, high blood sugar, high blood pressure, thinning of the skin, and what is nonscientifically referred to as a ‘camel hump’ of a fat deposit on the back of the neck. It also likes to settle in the abdomen for a permanent little pad of tummy fat.  There are no exercises in the world that will get rid of them.

I know deep down in my steroid-damaged bones, that someday there will be a cure for this crummy disease.

In the meantime, I’m off steroids and I’m doing my happy dance!

Great News For LupusRanting

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The other day I received an email with some outstanding news.  LupusRanting was approved as a new member of the Healthcare Blogger Code of Ethics network.  Whoo Hoo!!

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The Code was established in 2007 to provide bloggers and their readers with clear standards in five specific areas:

Perspective: The blog author’s perspective should be clearly established.

Confidentiality: Patient identity is respected.

Disclosure: Bloggers must clearly disclose whether they are paid to pitch products.

Reliability: Sources for information should be cited.

Courtesy: Personal attacks should not be permitted.

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About the Code: The Healthcare Blogger Code of Ethics was designed in response to problems experienced by medical bloggers.  The goal of this Code is twofold:

1.  To give readers of a medical blogger a clear idea of the standards by which the blog is maintained.

2.  To give bloggers (especially anonymous ones) a clear set of guidelines they can show employers, patients, or other concerned parties as to the nature of the blogging.

“Since healthcare blogging is sometimes dealing with extremely sensitive information, it is important that these blogs maintain a high level of integrity.”

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LupusRanting is grateful to the team at HBCE and other members who do their best to make healthcare blogs a valuable resource for patients, caregivers and others interested in fighting specific medical conditions, or improving health care in general.  I’m proud to display the HBCE logo in my sidebar and will continue to work hard to maintain the standards promoted by the Code.

I know it’s not the People’s Choice Award, an Emmy or an Oscar, but I’m thrilled to be on the short list of bloggers who have received this honor.  Many thanks to all of you who take the time to read and comment on my posts!!

To Do List – 2010

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I’ve been searching for a topic to write about when I ran across a great post from Organised Chaos, who borrowed her idea from Kelly.  I’m passing it on to this side of the hemisphere/blogosphere and heaven only knows where it will go from here.  Feel free to write your own list (or not) and if you have time, mention where it originated.

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Writing down a list of Things To Do always helps me stay organized and focused.  However,  these are not resolutions!  I love the promise that comes with a new year, so here’s hoping 2010 will be a fantastic one for us all!

In no particular order …..

**   Wean completely off prednisone. Started at 80 mg seven years ago and am down to 2 mg today.

**   Eat breakfast each and every day and not skip meals.  So for I’ve stayed on track.  Yay me.

**   Play my guitar on a regular basis.  It’s a lovely instrument (Martin 1972 D-18) and I’ve neglected it too long.

**   I’m getting a tattoo come hell or high water.  Probably hell.

**  Think about getting another kitty.  The key word here is think.

**  Download more songs from iTunes.  It never gets boring.

**  Keep painting.  I might be famous one day.  Or not.

**  Be more mysterious and less serious.  I’ll let you know if this works in my favor.

Now get going and have a fun,  crazy, healthy and happy 2010!!!