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Personal Essays
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 A Mother's ViewMy daughter Christine has had Lupus, with the accompanying vast array of symptoms, since she was 15 years old. During college, in her attempt to explain her illness, she wrote about Lupus and its debilitating effect on her energy, by a comparison to waking up each day with a limited amount of "spoons". We All Have Lupus. - My Speech from The Lupus Gala BrunchThe following speech was given by Christine Miserandino - Donato at the Lupus Gala Brunch given by the Lupus Alliance of Long Island/ Queens. It is titled "We All Have Lupus"
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Out of Hibernation- Thoughts on the WeatherI have been really enjoying this new summer weather. I love the warmth and sunshine- such a welcome relief from the dreary, gray days of winter. Although this seasonal metamorphosis happens every year, I can't help but be amazed at the changes.
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The Spoon TheoryPlease take the time to read Christine Miserandino's personal story and analogy of what it is like to live with sickness or disability. Click HERE to read "The Spoon Theory" "My Secret is safe with ME" -what I wish people knew about me.It has been said by many people that I am a very good actress. "But You Don't Look Sick" seemed to be all I heard. Is this a good thing? Sometimes it is an appropriate thing to say after a speaking engagement, or when I used to
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Humor: Everything I need to know, I learned from my 4 year old.Ever see those posters saying "Everything I need to know I learned in Kindergarten?" Well my son is four, only in pre-school, and has taught me a ton. I find this particularly humorous, because this is the kid who insists he can go on a field trip to the future. (I usually tell him Why not?!)
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Why I Participate in the Lupus WalkIt is the beginning of October and you know what that means to us here at Butyoudontlooksick.com... It is Lupus Awareness month. For this month, I try to post mostly about Lupus or lupus related stories, reviews etc. I also spend a lot of time talking about my efforts with the Lupus Walk in my local area. It is getting closer...there are only 18 days left to fundraise until the walk (On Oct 21). We need your help to reach our goal. Many people have asked me why I choose to participate in the Walk Along for Lupus. Of course there are many other things I can be doing with my time on an early Sunday morning. Asking a women who has lupus and arthritis to wake up early and walk is certainly asking for a miracle. This year will be especially hard to get out of the house with a new baby. Hasn't anyone ever thought of a sleep athon?? Thoughts on AgingThe first thing out of my mouth most mornings is usually some sort of multi- syllabic utterance such as marghblamhaba which can be loosely translated into many phrases such as, Oy vay!, Mon Dieu!, Dear Lord!, or What???, depending on your cultural and religious preferences. My thoughts quickly go to the things I have planned for the upcoming day, but first I take a mental inventory of my body and how I'm feeling that day. Joints: check, energy: check, lucidity: check. I then stumble out of bed, tripping over the jeans and physics books I left on the floor the previous night, and go about beginning my day. Never ask - "How are you feeling today?"It's taken me a long time to get out of the automatic habit of saying, "How are you?" when I see someone. That question would be all right to ask most healthy people because the spontaneous response of "fine" would be appropriate.
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A Time To Give ThanksThis is the time of year that inspires us to examine our lives with a closer look and make a checklist of what we are truly thankful for. No matter what your religion or your background, Thanksgiving has become a national holiday where we are reminded to take an inventory of the many blessings we often take for granted. A Lesson in Adapting from my DogI learned a few lessons in the past few years about "adapting" and believe it or not I learned some of it from walking my dog. A very long story short-- my puppy broke his little leg when I first got him. Now you would look at him and never know the difference. He jumps, walks, licks and runs. He likes to be cuddled, and he loves beyond measure. The Birthday BluesIt was my birthday this week and I have been in a funk, depressed, and moody and no one really understands why. Birthdays are occasions for presents, friends, and usually a few candles to blow out. Everyone around me has tried to cheer me up with lunch dates, surprise parties and lots of chocolate cake. Not So Invisible Anymore?My daughter Christine has, what is sometimes called, an invisible disease. Though she looks teriffic most of the time, she has suffered, for over a dozen years, with the debilitating and painful symptoms of Lupus. It's become an inside family joke when people commented almost incredulously- "but you don't look sick." Breaking the Ice on Sex, Intimacy & Chronic IllnessI was diagnosed with SLE in my teens, long before I'd become sexually active. When sex became a part of my identity, instead of being a glorious whirlwind of sloppy kisses and knock-your-socks off orgasms, I viewed it as
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Lupus Sucks!My daughter Christine has a tee shirt with the above logo emblazened on it, and I have always disliked the crudeness of that phrase. Every time she wore that shirt I would wince and tell her how I hated that expression, but she would just laugh and smile an all knowing Mona Lisa smile. Well she has finally won me over to the dark side. Everything I thought I knew about going to the hospital. ( also known as do what you gotta do)Unfortunately when you have a child with a chronic illness, you come to think of yourself as some sort of expert on the subject. It's not exactly a specialty that you dreamt of having, but one nonetheless that you take ownership of with some sense of pride. Happy New Year - 1 Word - 2006I love the thought of New Year's Day. It is a great chance to renew the spirit, set goals, and start fresh. Whatever you have experienced in the past year this is a chance to have a new outlook. What a great feeling! For those of you who were members of this newsletter last year, you might remember that every New Year's eve, instead of "resolutions" I pick a one word that encompasses all the things I want to work on, for the upcoming year. I have encouraged friends, family and readers of this website to do the same thing. The Blessings of Chronic IllnessAt the time of this writing, it is a few weeks before Thanksgiving in the US. Each day, I must fight an overwhelming array of symptoms caused by Sjogren's syndrome, fibromyalgia, chronic myofascial pain, hypothyroidism, diabetes, celiac disease, gastroparesis and periodic limb movement disorder. I am learning to cope with new medication that is fraught with unpleasant side effects. I am in the midst of the disability application process and have no income. And yet, I know that I am blessed, without question. How can this be? Being a Teenager in a Chronic Illness WorldLiving with a chronic disease, especially when you're a teenager is never easy. Having to create a balancing act with school, homework, friends, your other activities and with things you have to do to stay well- like taking naps, and getting to doctors appointments, can be extremely difficult.
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When the Invisible Becomes Visible - thoughts on becoming pregnantRecently, I learned my husband and I were pregnant with our first child. We were, and are, ecstatic! We have been looking forward to having children for years, and we had been actively trying to get pregnant for months.
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"Addition by Subtraction" - Sometimes Less Is More: A Lesson InThere comes a time in everyone's life when they must re-evaluate things. For some it is their career path or material possessions, for others it is their choice in friends or bonds with family. For me, this year, it has been a little of everything.
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