Tag Archives: Autoimmune Disease

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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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.

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!!

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