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.

butterfly5

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!

butterfly5

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

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11 responses »

  1. You were 9 when this started? Oh my, that is really horrible.

    I’m glad you travel. Even at my worst, I still did. I have my secrets, I ride the big city tour buses everywhere, and I am in bed by 6pm. But I still make it the best I can. I am proud that you do, too.

    Melissa, I second your #27. No one gets it …

    Thanks Girl! Good to know that some of ya’ll totally get #27! And keep traveling. 🙂

    • I will, although the whole unemployment thing is really going to cut that down!

      FYI, Cafe Press has some really cute invisibile disease shirts on sale this week. I wrote about the invisible disease t-shirt I wanted a few weeks ago, forget what the post it was mentioned in. But feel free to steal my t-shirt and order it for yourself.

  2. I love how you have so much about going to the beach and being in the sun. I grew up in MN and used to walk around the lake every day. i love going to the ocean, and feeling the sand in my toes. All of those things made me sick and no one knew why. I was sick all the time, no one knew why. Finally…lupus! Now the sun is my kryptonite, and going to the beach happens rarely. Now, people who don’t know I have a chronic illness think that I am perfectly healthy and don’t understand how I can go from being energetic to tired in the blink of an eye. Now, my lips swell up like Angelina Jolies whenever something is going on in my system. Now, my life revolves around doctors and medications! However, I have realized that God can make beauty out of chaos and he can make the unlovely lovely. And where there is a will there is a way. And…I really could be an academy award winning actress!!!!!!

    Oh honey, I know all about being a good actress too! Hang in there 🙂

  3. Hi there! Happy Belated Birthday! Thanks for your comment today. Ouch…. lol! I used to be a pretty good atrtist, but if I had been able to draw my hand instead, most would tell me it’s abstract art or never, ever to try to even go near a pencil again! 🙂 I talked to Dr. Moore three times and we are trying to coordinate things out here but it looks like I may pull the trigger up in Philly this Friday with my old rheumy. Having a few “white nights” myself these days so I’m carefully considering everything, trying hard not to be impatient or make a decision based on frustration or fear. Arizona was VERY productive so at least mentally, I’m “feeling better”.

    How are you treatments going?

    Best,

    Carmel

    Happy to hear you are in good spirits! I’m hanging in there … having an infusion on 9/24 🙂

  4. Laying your heart out for all to see is a difficult thing all by itself.
    I admire your courage and strength.
    I pray that each day you can find some solace, somewhere, waiting just for you.
    be safe, be well, be happy
    ~m

    Thanks so much for your kind wishes!

  5. I have no idea how to respond to this, but I did read it all Sue.
    I’m lucky and I know I am because I’m perfectly healthy these days, but I have faced my own mortality, and more than once, so in a small way I can relate to some of it.
    It may not be in relation to the long term limitations and problems you face, but I can say, with full confidence, your courage and determination are to be greatly admired, and they are indeed admired by me.

    That’s so kind of you! Facing our own mortality, whether through illness or personal experiences can often lead to life-affirming appreciation of how we choose to live our life. I hope I said that in a way that makes sense. 🙂 And if we’re lucky, we see not only the gift, but the grace to move forward if our hearts are open.

  6. What beautiful, honest answers you have for these questions! I find it sad that you had symptoms at 9 but went undiagnosed for so long. I too think that I had symptoms at a young age for my Hashimoto’s Thyroiditis and anemia but I had no idea anything was wrong because it became my “normal.” Maybe doctors should be keeping a closer eye out for these things when we are younger and doing more blood checks especially since autoimmune diseases seem to be on the rise in this country. Anyway, I enjoyed learning a bit more about you and think it is good of you to help raise awareness about these illnesses. Hugs to you!

    I think doctors DO keep a closer eye out for autoimmune diseases, especially pediatricians. In the 1960’s when I was a kid, adults were rarely checked for lupus, let alone children. Thanks so much for your kind thoughts. Hugs to you too!! (((:))))

  7. Hi i have read youre whole blog and wanted to start by thanking you for writing it at all,i think the gift of disapointment cracked me up as it just keeps on giving and have never heard it put so well.I am 50 have had chronic fatigue 26 years,fibro 12,and live in a rainforest in eastern australia with a man and 2 poodles.
    Please feel free to make contact if you wish,i have no friends anymore,real life ones got on with it and net ones dont understand.I make beaded jewellery when i can,sleep a lot,stay awake a lot,hurt a lot,cry a lot,am bloody fed up a LOT!
    regards Julia

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