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* Looking back on 5 years of ButYouDontLookSick.com
There’s a pain that can be worse than any physical disease.
It’s the loneliness you feel when you see your friends go out and do things without a second thought and how that is an impossible dream for you. How the simple act of attending class or going out to supper becomes a mountain you just cannot scale, because of the varying weights that disease dangles along with it. It is so difficult when you are all alone and those you love are where you want to be and they don’t even understand the magnitude of how much you would love to have that normalcy to be there. I would love to be able to not deal with a single consequence and only reap the rewards of fulfilling that task with them, but I can't always do that.
Continue reading "The Pain of Disease and the Triumph of Togetherness" »
This month is the 5 year anniversary of ButYouDontLookSick.com!!
I’m not an old timer like Wendy…I only joined ButYouDontLookSick.com on July 3, 2005. Since then, checking the message boards has been a daily activity – if not more than once a day – or an entire afternoon or evening!
Continue reading "5 year essay: My new "career" at ButYouDontLookSick.com" »
This month is the 5 year anniversary of ButYouDontLookSick.com!!
Wendy Jones, butyoudontlooksick.com Message Board Host Shares Her Thoughts on Our 5 Year Anniversary.
Continue reading "Wendy Jones, butyoudontlooksick.com Message Board Host Shares Her Thoughts on Our 5 Year Anniversary" »
I like to avoid stress. That is, I intentionally avoid adding stress, in addition to the everyday stresses I cannot avoid. For example, I can't avoid pain, no matter which way I dodge. I can't avoid the necessity of working or office politics. I can't avoid all family obligations and relationship strains, in fact, living with someone like me can't be easy. So all that unavoidable stress gets to a person. Somehow we've got to just roll with them, roll them out of our minds and off our backs.
Continue reading "Personal Essay: Just Let it Roll" »
I would like to thank my mom for her persistence and her nagging. Persistence for raising a child with chronic complaints. She knew I did not sleep well, she knew I had joint pain and she knew I seemed to catch everything that was going around. She could have thought I was faking it, to get out of school, or exaggerating to get attention. Instead she brought me to the doctors, until the doctors themselves could not deny something was going on, even if they did not know what. Thus my odd blood work was watched bi-annually and I saw more than my fair share of specialists. Many things were ruled out a young age and without this persistence, this understanding, it would have been years before I received the treatment I needed. Just having that one person on my side, fighting for my needs made and makes a great deal of difference. I may have been frustrated with finding a diagnosis, but I never felt like anyone thought I was crazy or a hypochondriac, not with my mom on my side.
Continue reading "Note to my Mom - On Mother's Day" »
I was thirty two years old when I had my stroke. I banged on the screen door window to catch the dog’s attention; the glass shattered and severed two tendons in my arm and a bunch of nerves in my hand. The surgery was extremely successful in repairing that damage, but after I got home from the hospital I began to feel strange. Not myself. We checked with the pharmacist and learned that I was having a bad reaction to codeine, prescribed for the after surgery pain. When I couldn’t tie my shoes and didn’t know the names of things, including myself and my daughters, I was worried, but thought it was just an aftermath of the whole affair. Anesthetics and I have a track record of not getting along. By the time we realized that something much worse had occurred, it was too late to do anything about it. The doctor said that I’d had a slow bleed that had repaired itself and now I just had to recover.
Continue reading "Coping With the Aftermath of a Stroke" »
As St. Patrick’s Day rolls around, I find myself thinking of all the things I cannot do to celebrate this so-called “holiday”. Usually, I would still be here in Santa Barbara studying for a million finals, but I “lucked out”. I will be home this year. Sounds great, right? WRONG. All of my friends’ spring breaks are next week, and my boyfriend can’t get enough of his “Irish roots” on this joyous occasion. So I will sit at home, once again unable to partake in the festivities. So much for being twenty-one in two weeks.
Continue reading "Personal Essay: Your Lucky Charm" »
Sometimes I have to compare politics to sex. Politics can be confusing and scary, but when I look at it from a biological point of view, somehow everything seems to fall into place. Therefore, if this ongoing debate between Hillary Rodham Clinton and Barack Obama is one romp in the sack, then Thursday’s Democratic debate was when my hormones began pumping for the final goal: a woman to get on top and win.
Continue reading "Sex and Politics: Safe, Covered, and Totally Satisfied." »
I recently discovered my passion in life. I also bought a giant poster for my dorm that says “PASSION” on the bottom, just to remind myself of why I am living. If you are not passionate about life, then you are not living at all.
I used to think that having a chronic illness was simply a burden I had to bear; it was in no way a positive addition to my life. I prevented me from living a “normal” life. Too many days were spent inside and too many nights were spent crying. I looked at my friends and felt jealousy towards them because they did not have to worry about a nearby bathroom, or making a long drive without stopping. What a beautiful thing!
Continue reading "Essay: Contributing Passion" »
An essay submitted by one of our readers.
Denial serves a wonderful psychological purpose. Thus the “NO!! ” when someone gets terrible news. It is nature’s built in kindness to buffer the inevitable. Slowly, carefully, each according to his or her own psyche, we absorb the pain.
Continue reading "ACCEPTANCE OF MEDICAL DIAGNOSIS" »
Well 2007 is over and now we open the book on 2008. Story unwritten, only the prologue from last year on the pages. What will you be filling the pages with on yours?
I have done a lot of thinking. I have been through so much in the last few years, that I really want to push my effort through, to make this year the year I run down the path to something better instead of crawling. In the last year I was on the road to constant worry over everything. Worrying robbed my spoons and made each new obstacle harder.
Continue reading "Well 2007 is over and now we open the book on 2008" »
Most of my friends admire me for what I accomplish. Those closest to me know my deepest horror stories, and most embarrassing moments concerning my disease. Having an inflammatory bowel disease is not a pretty picture- or a pretty smell either. It puts extreme limits on your everyday life, and makes you fear going anywhere without immediate access to that porcelain bowl. Like any chronic illness, it drains you of energy, and it heightens frustration when someone asks “why can’t you go to the party tonight?” Sure, you have no plans, but the only thing getting your attention lately is twelve water bottles, a copy of Cosmo, and your pillow. So unless the host of this party allows you to take a nap in the midst of the red cup parade, you’re not going.
Continue reading "Personal Essay: Baby Steps, People" »
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?!)
Continue reading "Humor: Everything I need to know, I learned from my 4 year old." »
My tree stand was custom-built just for me. If I was going to continue sitting out in the woods every fall, I had to have something I could handle. Rheumatoid arthritis made a ladder stand impossible for me to climb, so my husband designed one with steps just six inches apart. Now, despite my handicaps, I could hold the rail, walk up the staircase safely and retreat to my “quiet place.”
Continue reading "Essay: On Higher Ground" »
We are coming upon the time of year when people are more giving and thoughtful of their fellow humans all around them. A time of year where people reflect on their lives and wonder what a new year may bring. So where did the other ten months go? What is so different about now?
Continue reading "What is the meaning of giving?" »
Let’s face it: struggling with an invisible disease like Epstein-Barr and Chronic Fatigue can make you feel “Less Than”.
Less Than Normal.
Less Than Worthwhile.
Less Than Zero.
In fact, most people who believe in metaphysics (the idea that your inner thoughts create your outer circumstances) call this the “Disease of Low-Self Esteem.”
They may have a point. I know that every day I have a flare-up, I struggle with the guilt of not being "like other mothers" of four-year-old sons; parking us in front of Playhouse Disney on a sunny day instead of running
around the park; microwaving day-glow orange pasta on a rainy night when every fiber of my love-to-cook being wants him to have fond memories of my homemade mac n’ cheese when he grows up. I have always had this insane drive to be "The Best" at everything I did: the Best Writer, or the Best Decorated House at the Holidays. I hated falling short of other people's expectations ("It's noon and you aren't dressed yet?", "You're calling out of work AGAIN?"). But you know what? Even when I was “healthy”, I was miserable!
Continue reading "Essay: In Praise of Ringo Starr" »
Ever since lung cancer forced Denise to become bed bound, Chili, my cocker spaniel, and I had been visiting on Friday afternoons. Chili jumped right up on the bed -- first sniffing for bits of food lost in the tangle of blankets and sheets and then curling up next to Denise for a nap. Over the months I came to follow his example. At first I sat poised on the farthest corner, not wanting to upset Denise’s arrangement of books, uneaten plates of food, and medications. Near the end, Chili nestled on one side of her and I lay down next to her on the other side. We both stared at the ceiling as we exchanged stories about horses and mothers and doctors and dreams. Once, in a quiet moment, Denise turned towards the daylight entering through a gap in the curtains. I admired her still pure skin and the way her chestnut hair cascaded around her angular face. She closed her eyes and arched her head back as if drinking in a stream of sunlight.
Continue reading "Saying Good-bye" »
The day started early for me. When I awoke at 7:15, my husband and three of our seven dogs had already gone for a golf cart run around our farm. Putting on my red flannel housecoat, I poured my coffee and went outside to greet them. Here they came, lickity-split, so excited to see me. After such a hot summer, the cool weather had invigorated all of them including Eddie. “I’m not ready for this!” my brain cried, but I forced a smile anyway. To them, I looked like I felt fine.
Continue reading "Essay: A Day in the Woods" »
We are at odds with an indomitable foe of the worst kind. One that challenges us with callous indifference and leaves us struggling while the rest of the world looks on unknowingly. It makes us question our toughness
and our resolve. It forces us to make difficult decisions in which, oftentimes, none of the choices seem favorable. It causes us to grow resentful when we think of what we’ve lost and what could have been.
Continue reading "Essay: A Spoonie "Call to Arms"" »
Sometimes I think those of us with Fibromyalgia are considered a special brand of crazy, among invisible diseases. People can understand a food allergy, auto-immune specific issues, even something that they may not have heard of, but is well documented like SLE. People with Fibro seem to have a reputation as lazy and liars. Science can't tell us why we hurt, why our nervous system has gone haywire or why we are exhausted all the time.
Continue reading "Personal Essay: The Fight with Fibro." »
When you suffer from an illness it’s hard to be upbeat all the time. One can’t always smile through the pain or think mind over matter will move a mountain (or even the trash to outside the door). It’s a sad part of life no one ever wants to talk about.
The truth is when your joints hurt and you feel sick 24/7, you don’t much feel like playing congenial all day long. Sure we all try not to be the Wicked Witch of the East everyday, but it’s going to happen; You will get snippy or stubborn. We all do.
Continue reading "Personal Essay: It's okay not to smile." »
The 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.
Continue reading "Thoughts on Aging" »
Those of us who live with a chronic illness, deal with a lot of difficult emotions. I often find myself with feelings like frustration,boredom, loneliness, sadness, etc. For me, these emotions become their strongest at night, when I usually cannot sleep or go out. My biggest coping skills- going out for a walk or talking with a friend, are not options in the middle of the night. So, how can you alleviate these feelings when you are in your house by yourself? Dancing is one good way.
Continue reading "The Power of Silly!" »
I always tend to write about what's going on in my life, often as a way of working through situations for myself. When I sat down to write this article, thinking in terms of the holidays, the only thing I could think of was what I am having to do - make the best of a very difficult situation that just happened to occur during the holidays! Perhaps some of you are going through similar challenges - whether created by illness or life situations so in the spirit of helping one another, I'll share what's going on with me.
Continue reading "Making The Best Of Hard Situations During The Holidays" »
This 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.
Continue reading "A Time To Give Thanks" »
Ever wake up, pull on your jogging shoes and think about just not running that day? Chances are not, since running is hard with a cane or crutches, or everyday pain. So chances are most of that sugary motivational stuff out there is simply not for you. Here are some more practical things most of us with a hidden illness can do!
Continue reading "New Ways to Motivate your Life: A guide for the rest of us." »
Out of all the areas my illness kills the joy for-grocery shopping is number one on the top ten list! Just the mere thought of grocery shopping makes me want to crawl into bed and declare myself on a fast! I simply cannot stand grocery stores.
Continue reading "The Dreaded Grocery Store: Tips on saving time and energy while grocery shopping" »
A good friend of mine just asked in an email whether, for those of us fighting chronic diseases, "Is there EVER a good month?" Boy did that make me think... IS there?
Continue reading "Redefining The "Bad Month"" »
The sofa was squashy, just the way I like it, ‘comfort before price’ was always my motto. Yet, all I could think about was the price of the sofa set----the set that we truly desired. “Nicole this is it” my husband said with a childish grin on his face. I forced a smile as my mind became fixated with the price tag. I wanted the sofa set---I really did---The sofa set would go deep into our pockets and hold us captive for over two months, as a short medical leave turned into long-term disability leave.
Continue reading "Chronic Illness Doesn’t Care!!! Memoir of Coping with Disability" »
I 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
yet another physical activity, I had to worry about! My bones popped so often, my husband and I joked that I had the ability to make love and make music at the same time. My toes and legs would stiffen from the uncontrollable muscle spasms; and forget about spontaneity, I could be exhausted one minute and achy the next.
Continue reading "Breaking the Ice on Sex, Intimacy & Chronic Illness" »
At 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?
Continue reading "The Blessings of Chronic Illness" »
Living 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.
Continue reading "Being a Teenager in a Chronic Illness World" »
Recently, 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.
Continue reading "When the Invisible Becomes Visible - thoughts on becoming pregnant" »
Have you ever heard something about one of your kids that just really surprised you? We think we really know our family members, yet everyone has lots of details we don't know! Here's a fun little game for one of those long, boring late summer nights, when there's nothing on TV. Or, you could just copy and email it to your friends and have some fun!
Continue reading ""How Much Do You Know" a 21 Questions Game" »
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