sick and tired?

I am excited to have a guest blogger today and to promote her book, Sick and Tired. It takes a great deal of bravery to live every day with a chronic disease or chronic pain. Kimberly Rae knows this, and she devotes her life to helping others. 
Not only does she want to help other people with chronic conditions be heard and encouraged, but she gives much of her time and limited energy to the fight against human trafficking. I am proud to present this great lady to you!

What Sick People Wish Healthy People Knew
With nearly one out of every two people having some kind of chronic condition, it is very likely that you either have a chronic illness or you love someone who does. Today’s post has tips from people with chronic illness, things they wish healthy people would understand, compiled by Amazon bestselling author and Addison’s disease sufferer, Kimberly Rae.

Here’s what real people with chronic illness have to say about what they wish healthy people knew…Disclaimer: Each of these will not necessarily fit every chronically ill person, they are just to give an idea of what many may feel.

1. I don’t want to be sick. If I could make it go away, I would.

2. I feel guilty for my limitations and need reassurance that I am still valuable.

3. I wish they would know how hard it is for me to plan ahead to do things. Also, just because I’m able to do things one day doesn’t mean I can do them the next. The inconsistency and uncertainty is the worst part, because I never know how I will feel from day to day.
4. I wish the well friends realized that I cannot keep up the same level of activity when I am under the weather. My house is a mess; the spiders won’t pay rent, and the kitchen floor is adhesive. I’ve been MIA over the last 2 months or so–the only people who have contacted me (to see how I’m doing) are ones who have health issues of their own. 
5. I wish they knew that we are not lazy. We want to participate in all the things they do, but sometimes our bodies just won’t let us. Also, just because we don’t look sick doesn’t mean we aren’t struggling with pain or fatigue.

6. If it weren’t for facebook, I would have no friends at all. No one offers to help. No one comes around just to talk. I have lived in this place 3 years, not one person has visited me here. I can’t clean by myself, I have trouble cooking every day (and hubby is so good about not insisting), grocery shopping takes all of my strength since I have to also carry it inside and put it away. I sometimes pray for an OCD friend who will be so aghast at the condition of my house that she will volunteer to help me. 🙂

7. If I say no to an activity or event, it is not personal. It’s not that I don’t want to go (I do!), and not that I’m avoiding those people; it’s just that even fun things can be more than my body can handle sometimes.

10. I wish healthy people could accept that my condition is not going to go away. If you ask, “Are you feeling better?” I don’t know how to answer. Better as in not sick anymore? As in better than the last flare up? Better than this morning? Instead, I’d love to have you smile and say, “How are you feeling today?” Thanks.

If you have a chronic illness, what would you add to this list? A little understanding goes a long way, so don’t be shy! (But with gentleness and respect, please.)

Sick & Tired Book Trailer:

Kimberly Rae has Addison’s disease, hypoglycemia, asthma, scoliosis, and a cyst on her brain. She loves helping others live joyfully despite chronic illness. Check out her newest book, Sick & Tired, on Amazon, released June 25th, 2013!


I googled my Uncle Alton today. This is what I found on the WWII Memorial Site:

Service Branch: ARMY
Rank: 1 LT
Date of Death: 0000-00-00
Hostile: Dnb
Home of Record City/County: Price
Home of Record State: Wisconsin
Conflict: WWII

I remember looking him up at the actual site in Washington D.C. and finding nothing. My Uncle Alton died in WWII, and no one has even recored when. There is no other record of him anywhere, at least, anywhere electronic, which is all that exists for modern America. Most likely, even the scar on the mountainside in France where his plane crashed has been renewed, as nature does.

You probably think I’m going to go on a rant about how wrong that is and how our soldiers deserve their honor and memory, and that last is quite true. But that’s not where I’m going. Strangely, the fact that he is gone and there is nearly no one left who knows or cares that he existed makes me more proud of him, though he died long before I existed.

My uncle saw a need, heard a call, and answered it. He looked around, said ,”Someone’s got to do something,” and realized, “I’m someone.” He didn’t get rewarded, didn’t achieve fame, didn’t get remembered at all. The fact that he didn’t think about those things makes me proud of him.

Fame has replaced success as the chief goal of people under thirty. (No, that’s not a random musing; it’s statistically true.) Fame at any price for any reason–just get me the viral YouTube video and it’s all good. It’s a bizarre psychosis that we’ve now got the most generous and most narcissistic generation we’ve had in my lifetime. Obviously, those are generalizations, but again, statistically accurate. Too often, the narcissism overcomes the generosity, at which point doing good and giving to others becomes just another way to make myself feel good.

I have quite a lot of faith in this generation, though. Hey, my kids are in it. I’ve kind of got a stake in how it turns out. So I’ll just say, to all generations, we need more Uncle Altons. We need more people to look around them, see a need, and jump in, reward or not. We desperately need more people to ask how they can serve rather than how the world can serve them.

I struggle with it myself. I want to be noticed. I want to be successful. I want my writing, speaking, and other abilities to be recognized. I am human and fallible and too proud and competitive for my own good. But I know that what I want more than those things is to have taken what I was given and completely used it up for good, not for glory. It’s just so hard to remember that every single day.

A good definition of brave? Doing what needs to be done, because you are there and the need is before you, never caring if it’s remembered. You may never show up on a Google search. I think Uncle Alton would be glad he can’t be googled. That’s not why he went to France. This Memorial Day, I remember him. Though we never met.

Roses, French class, and "the girl"

Shakespeare asked the question first – I merely reiterated it on Facebook last week. “What’s in a name?” I asked my friends last week, “If you could choose a new name for yourself, what would you choose?” I’ve always had an uneasy relationship with my name. It’s too short, too plain, too “sit there and look dull.” Even the letters do nothing but stand straight up.
My mother preferred one syllable names; consequently, all of my children have multisyllable romantic names. I rebelled.
High school allowed me to dabble in name changing. In freshman French class, we could choose our own French name by which we would be “appelle”d all year. I chose Brigitte – foreign, lilting, as far from prosaic monosyllable Jill as possible.
A year later, our Spanish teacher chose names for us, and she tried to match our real names. “Jill” stopped her. I mean, how do you even pronounce that in Spanish? It comes out like “he” with a hint of “yuh” at the end. That is not a name – it’s the sound one makes when coughing up something unpleasant. So she christened me “Juana,” the feminine form of John, possibly the only name worse in terms of common, ugly, boring. Other girls got Katarina and Maria, and I got . . . Juana. Seriously. Not. Right.
In college, I made a fleeting attempt to change my name to JillMarie. It’s didn’t quite get off the ground.
Maybe my mother was rebelling against her Scandinavian upbringing. Did she deliberately choose a name her Swedish father could not pronounce? Rather than call me “Yill” and admit that he couldn’t extract the “J” sound from his tongue, he simply referred to me as “the girl” on the few occasions we met. How he pronounced the name of his daughter Joanne I’ll never know.
When I answered my own Facebook question, I decided I would prefer to be called Kate or Sarah. Kate I suppose, because of Katharine Hepburn – a woman who has always seemed what I’d liked to be – unflappable, honest, and beautiful in a way that dares anyone to deny it. “Sarah” sounds like a woman who’s looked life in the eye and come out gracious, smiling, and wise. I’d like to be a Kate or a Sarah.
What’s in a name? Shakespeare knew – there is something that matters. In ancient cultures and, indeed, in many cultures today, a name denotes the parents’ hopes, dreams, and plans for their child. What a parent called a child mattered immensely to that child’s future. Would I be a different person had my mother called me Kate or Sarah? I have no clue.
But I do know something that might be helpful to someone today. I know without a doubt what’s your heavenly parent calls you if you call him Father. He calls you:
  • Uncondemned(Romans 8.1) So now there is no condemnation for those who belong to Christ Jesus.
  • Free (Romans 8.2) And because you belong to him, the power of the life-giving Spirit has freed you from the power of sin that leads to death.
  • Accepted(Romans (15.7) Therefore, accept each other just as Christ has accepted you so that God will be given glory.
  • His Masterpiece (Ephesians 2.10) For we are God’s masterpiece. He has created us anew in Christ Jesus, so we can do the good things he planned for us long ago.
  • His own possession (1 Peter 2.9) for you are a chosen people. You are royal priests,a holy nation, God’s very own possession.
  • His temple (1 Corinthians 6.19) Don’t you realize that your body is the temple of the Holy Spirit, who lives in you and was given to you by God?
  • His child (John 1.12) But to all who believed him and accepted him, he gave the right to become children of God.
  • His friend (John 15.15) Now you are my friends, since I have told you everything the Father told me.
  • Brand new ( 2 Corinthians 5.17) This means that anyone who belongs to Christ has become a new person. The old life is gone; a new life has begun!

I can stick with being me if I can have those things.

What about you? I know you might be comfortable in your name, but if you could choose, what would you pick? Or does your name have a special meaning for you?

Happy? Mother’s Day

The elevator door slid open to sterile hospital fluorescence. I’d waited on this floor already for five hours. I knew those lights. Funny how sterile can be a synonym for both “cleanliness” and “lifelessness.” Hospitals take pride in the former, avoid the latter. Funny that I can’t distinguish between the two. My brother stood on the other side of the door, waiting. “She didn’t make it.”
“You’re kidding,” I stammered, unwilling to grasp that he wasn’t. Only a half-hour ago the surgeon had said it went well. Thirty minutes before they assured me I could escape the tense waiting room and eat a relieved late lunch.
Keith looked annoyed. “I wouldn’t kid about something like that.” No. But it was death we were discussing here. No one knows what to say to death, least of all a 17-year-old kid who knows everything and nothing at all, who suddenly had all she really knew ripped away with four words. “She” was my mom. And she didn’t make it.
Mother’s Days were always red roses and crumbly breakfast in bed and surprises my mom probably didn’t love but was too loving to admit. Until, after that day, they weren’t.
After that, I grew up fast, worked my own way through college, fancied myself a mixture of Sinatra and Bogart’s bandit nemesis– “I did it my way and didn’t need no stinkin’ help.”
Emotionally, I performed a dance of simultaneous avoidance and wallowing. A complex feat of genius choreography or an oxymoronic mishmash, take your pick. I religiously evaded all card racks in May. I cried and talked and prayed when I felt like it, since no one ever explained to me a timetable for grief. Mission accomplished. Moving on.
I had no idea the tiles I set down wove a perfect mosaic of a common pattern. In her book Motherless Daughters, Hope Edelman writes about patterns. Early loss of a mother creates patterns in her daughters, she tells us, which shape the ways we live and love beyond those first years. Patterns of yearning, fear, control, detachment – all hues in the picture of loss I wove blindly. Blindly until 27 years later, when the pattern became illuminated once again by a doctor’s glaring lights, and it was my turn to face the same surgery for the same disease. I decided, then, I didn’t like that pattern.
At fourteen, my mother lay in a tuberculosis sanitarium fighting for her life, while at home her mother died of kidney disease. Closely following came the deaths of her grandfather and then her brother in World War II. Her dad found a second wife–a woman who didn’t want stepchildren–and grew more distant. I don’t think Mom ever let herself become too attached to anyone after that. I know, now, she always lived with the assumption, more than the fear, that those she loved she would lose. I know, now, the attempts she made to control her children’s lives were attempts to make sure they never hurt as badly as she had. I know, now, that she never made plans for her “old age” because she never expected to be old. I know not because she ever got to tell me these things but because I almost did the same things.
Mother’s Day was great at my house yesterday. But it wasn’t always. There have been cycles of joy, love, loss, anger, and grief. I think that’s the case for all of us, or one day, it will be. While we must live those cycles, we don’t need to be controlled by them. We aren’t forced to conform to the patterns we learn early of distancing ourselves from the pain and people.
Joy comes in the morning—if we don’t run away from the things that bring joy, because those things can also bring hurt. Hurt is real, but fear doesn’t have to win. I hope the week ahead is joy-filled for you.
Have you had a painful response to Mother’s Day? I’d like to hear how you handle it.