"I have no promise of tomorrow."

Matthew 6:34  "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."

Proverbs 27:1 "Do not boast about tomorrow, for you do not know what a day may bring."

"I have no promise of tomorrow."

I say that all the time these days. Usually when I say it, I mean: "I'm feeling ok right now, and I may wake up tomorrow feeling debilitated. So if we are going to do this, we need to do it today." 

Of course this mentality only gets me so far when I must force myself to pace because I can only go so far and use so much energy. But God knows I try to do many things I shouldn't. I pay for it in the end, but I pay for it regardless. I boom and bust (good days and bad days) no matter my tactics for trying to ease off the extremes. Trying to create a balance that's more like the Lady Bug kiddie roller coaster, and UN-like the Dragon. But I'm kinda stuck on that Dragon right now. 

Those verses at the top have been a natural presence that drives my decisions about my life these days. I used to not have to think about these verses. I knew of them, and always thought they were nice verses, but now? Now, whether or not I'm going to embrace this moment of health with my children and husband or friends and family, or go out and get [this] done hangs on the balance of this very rationale. "I have no promise of tomorrow." "I don't know what tomorrow is going to be like."

It's amazing how different I see things; now that I'm ill. I watched a documentary that's on Netflix called Beautiful Broken Mind.  Lotje Sodderland, talking about her experience after having a stroke, said that she now has all this pain and frustration with having to relearn certain things she could do easily before, but then she explains that she experiences a whole other side to the world that she couldn't even hardly explain how beautiful it was. 

When I was listening to her speak about it, even though our stories are very different, I could relate to what she was explaining. 

That paradox. 

It sucks that I'm in pain most of the time. It sucks that so many of my days are spent on the couch or in bed because I can't do anything else. The quantity of mommy time and wife/husband time is diminished. I have lost friends, even though they mean well, I'm just a hard friend to have around right now. It sucks that I don't have any promise of tomorrow. 

But...

It's beautiful that I am forced to live in today. Most of the time, I can't even see past today because I can't process it. And that's ok with me. I'm sure it drives everyone around me crazy (Ha). And when I am "here" and have my good days, they are my GREAT days with my kids and husband (who get the best of me) and friends and family. I feel a high from being well enough to do things like walk through a store or do some housework or get behind the wheel of our minivan!! (that's a rare moment for sure!)

It's a very euphoric feeling. Feeling human. But enjoying being human

IN THIS DAY. 

I wish I could explain it better, 

but I can't. 

Update on Me: Chronic Illness Awareness (while we are at it!)

It has been beyond challenging to write lately. The fog that these illnesses leave me in is debilitating most times, no matter how much or little pain I'm in. But I've promised myself that I would keep writing or at least keep trying. So here I am.

The diagnoses keep coming and so do the pills. I take so many pills, that are both prescription and supplements, I never would've thought this would be me. The picture is just my morning doses.

Good news is I'm responding well to certain meds that help stabilize me enough to keep me out of danger. The bad news, I'm still very "sick." I still have my good days and bad days and very bad days. I will have bouts of days (sometimes a couple weeks) of good days that bring me under the delusion that I'm better. But then I flare again, and it's a reality check of how sick I still am. My good days consist of low pain, low-moderate fatigue, and 20%+ brain fog. My bad days consist of (having at least a few or all of these): high pain, migraines, chest pain, burning arms and/or legs, stiffness, back/neck pain, feet pain, ankle (from my past sprains) pain, ringing ears (6 months going strong), nausea, loss of appetite, dizziness/vertigo, major sensitivity to light and sound, and lots more brain fog.

The depression and anxiety that comes with chronic illness is just as debilitating sometimes. Being stuck in constant pain, fatigue, and fog can leave you feeling very alone and frightened. Watching everyone else doing things around you while you sit, makes you feel like a burden. The never ending question of, "Will this ever lift?" ransacks your thoughts like a dog gnawing at it's bone. It's depressing. Then comes the anxiety of being in situations that bring you more pain, and/or embarrassments and the judgments that come. Sometimes, it's pretty obvious I'm in pain. You can see it in my swollen pale face. But most times, my challenges are invisible to the world. I've been forced to give up so much. So many of my outlets for release have been taken from me, most the time.

I finally gave in to seeing a therapist. I was noticing that not only did my body flare because of the weather, or I overdid it, or I ate something, or it's my time of the month, or my body just felt like doing whatever the hell it wanted to and that day it decided to set my arms on fire..... Sometimes, my emotional instability will cause a flare. When I was making that separation, I realized that not only do I need to work on my body physically, but emotionally/mentally as well. The way I cope with stress is so unhealthy due to my tears and shutdowns ultimately leading to my body shutting down with pain and fatigue. So.... to the therapist I go!

Me with Merlin (my newly named icepack). 

I've also been doing a good job at failing at my new diet plan. The struggle is real! Especially when you are ill and all your comfort foods are "no no's."

So this is just a small glimpse into life with chronic illness. There are so many different kinds of chronic illnesses out there and I do count my blessings when it comes to things I can still do, that others can't.

If you are suffering with chronic illness, I am so deeply sorry. Know that you are not alone and find support groups whether in person, or there's some great ones online. Keep pushing doctors to find out your diagnosis and proper treatments. And love yourself enough to rest as you are able.

If you know someone who is suffering with chronic illness, believe them. Learn about their diagnosis' (the most romantic thing you could do) and how you can help them practically. Buy them fuzzy pajamas, slippers and socks, heating pads, ice packs, movies and don't forget the sweets! (that is, according to their diet restrictions) Give their caretakers a break. Love on them by appreciating that every day they live out their awful disease. Your support means everything to us.

Living With Chronic Illness: "Dear Flaring Kailan..." A Letter to Myself.

Living with chronic illnesses takes it's toll on my emotional/mental health. It's like being stuck on a never-ending roller coaster... and I HATE roller coasters!

On my bad days, (when I'm flaring) I feel like I'm "in the depths of despair."* The world goes on with or without me and I'm forced to choose to be ok with it going on without me. And then my mind travels to the ecstasy of dying. I think, "If the world can go on without me, then why do I even try? Why not die right here?" Its certainly the thing that will ensure the pain will stop. Yes... my bad days are dark days. It never fails. I cry a lot and bleed with love for my caretakers while hating my body.

But then, something happens! The flare lifts enough for me to breathe again. My energy is returned only in very small increments and then I taste life again. My eyes open wide and I feel thankful to still be alive. Thankful for having survived what I've survived. I do a little cleaning and cooking and actually hold conversations with my beautiful, quickly growing, children. My sarcasm returns with the husband and we actually laugh together. It feels like "a high." (I've never smoked weed before, but I can imagine being "high" feels a little like this)

I feel like two different people with these extremes.

So I decided last month to write a letter to myself. I wrote it while I was "high on life" and directed it towards my "flaring" self. I wrote it in hopes to reach out to myself, to save myself. I loved myself enough to at least try.

I had to pull that letter out today. I've been in so much pain this week and I could feel myself going down into my depths. I decided to share it with you as an example for you. I encourage anyone dealing with chronic illnesses to do the same. Wait till you are having a decent day where you are glad to be alive and encourage yourself. Pull it out on your bad days and hold it tight to your heart.


Dear "Flaring" Kailan, 

     Take a deep breath. Slow way down and hold this Truth as close as you can to your heart. You will survive. This is not forever. This flare will eventually lift and you will feel more confident then. You will feel hope again. I know you hate this part of the ride, but it will not last forever. Your kids love you, you are their favorite. Your husband loves you, you are always his best friend. Remember he's always so optimistic? Trust his heart. I know your fantasies of ending it all, but trust ME. When this lifts (because it will) then you will want to live. You will be back. Your laughter, play, silly-ness, singing, reading, writing.... it will all be back. I love you. This disease has changed your life, but it has not changed who you are and what you mean to everyone around you. 

                                                                    With all the GRACE in the world, 
                                                                         "Better Days" Kailan 


I made myself cry. Thank you Kailan.

What would you say to yourself? 



(*Anne of Green Gables)

Open Letter to the Chronically Ill Parent: "There is no replacement for you!"

I am so honored to share my space here with a very good friend of mine Melissa Glennon. We knew each other from church years ago, but have recently reconnected since I've been chronically ill. She's married with a quiver full of children. She is so faithful, always asking me how I'm doing and praying for me. Her friendship has meant the world to me. The unique thing about her is that she grew up with a chronically ill parent, who still battles with it today. I've talked to many chronically ill people, and the common "woe" (besides the obvious pain and suffering) is our "mommy guilt" or "daddy guilt." The guilt that comes when we can't do certain things and our children also suffer the consequences.  I'd bring my "mommy guilt" cry to Melissa and she'd encourage me like no one else could. I found myself using her words to help me comfort others. Then I thought... "I should just have her write an open letter for me to share." And of course, she's amazing so she wrote this very sweet open letter to her dad, who suffers with chronic pain. I'm so thankful for her letter, it encourages me as I continue to raise my own children in the dynamic of chronic illness. My hope is that you find comfort in her unique perspective also.

Melissa writes:

"Dad,

  

   You carried me on your shoulders. I distinctly remember the flip flop my stomach made when you swung me into the air and placed me up to see the world. You took us fishing and always baited my hook. You played catch with me, you wrestled with us, and built us snow forts. You led our family to know, love, and trust in God. I was loved deeply and I knew it!

   As I reflect on my childhood and growing up with you having chronic pain the most striking revelation is that my memories aren't centered around pain. I don't remember many moments where I felt that my dad was different or our family life was affected by the pain. It was simply the way things were and I knew no different. We knew your limitations and lived our lives accordingly.

We all believed that your first back surgery would "fix" you. Your pain seemed less for awhile and we were all so happy! But then came another surgery and another and another... And your pain never got better. I don't remember you complaining about the pain but I also don't remember asking you how you were doing. I am sorry! I am sorry that I was selfish. I remember thinking at times, "He could do it if he really wanted to." Or "He doesn't feel that bad." I wouldn't be able to empathize with you until years and years later.

   I remember you going to the Mayo Clinic to take pain management classes and it being a defeating time for you. Living with the pain seemed like the only option left. I remember being sad that there seemed to be nothing left to fix you.

   Your faith in God never wavered. And if it did, I didn't see it.  I still look at you today as a man of strong faith and that is something that has comforted me my entire life.

   Fast forward, a decade or two, and I am pregnant with my fourth child. Unbeknownst to me, I have a rib out of place and I am in horrible pain. I am unable to turn my neck. Pain shoots down my arm and I can't sleep or eat. After three weeks of pain and stress, a heavenly chiropractor finds the problem and my pain is gone. It was the closest thing I had ever gone through to where I could relate to what you have dealt with for the past 25 years. There really are no words to describe the sadness I feel for your daily affliction. For years, I have prayed that God would heal you, completely, "Take away his pain." One day while praying this it hit me, "What if God's way of taking his pain away would be to take him to heaven?" It stopped me cold. I am not ready to lose my father, and the selfish part of me wanted you to stay... Even if that meant you lived in pain. Again, I am sorry for my selfishness but I love you.  I will continue to pray for complete healing and trust that God's will be done.

   Thank you for loving me, my mother and my siblings, so completely through all your pain. I know you feel bad that you can't do more for us, but I never saw it like that. You have always been more than enough for me. I love you Dad!

To all parents out there with chronic pain: Thank you for loving your children through your pain!! There is no need to feel guilty about what you think we are missing out on. We would rather have you in our lives than any thing else. There is no replacement for you. We love you!"


This was very sweet. I wanted to share her dad's response when she sent him this very letter. 

"Melissa,  I think this is an excellent letter and I hope other parents out there have a daughter like you!  After being injured in Vietnam I learned to deal with pain, so I had a lot of time to prepare me for what lay ahead for me.  You don't deal with chronic pain alone and I'm thankful for my prayer group at work, the Mayo Pain Clinic and of course your mom ( my best support person ), who knows better than any of you what chronic pain is all about without having it.  There is no need for you to ever feel guilty, after all life is what molds our character and I think we're all hanging in there as a family!  Thanks for taking the time & sharing your thoughts.  Love, Dad "

I Believe Jesus: Finding Hope While Chronically Ill

It was so quiet and beautiful being out in the plains of Iowa. I sat on my folding chair, watching the nervous groom precede his wedding party down the aisle. I thought about how delighted I was to actually be there and witness this with my own eyes. It was very hot that night. I had prepared myself to be overheated and in pain, so I had my medication with me, along with my ice packs in a mini cooler bag and a battery powered fan. The faithful trees shaded me. I had pushed so hard to be there that night. I kept saying "the universe is against me!" as I watched all our kids, including myself, come down with colds. I was flaring and sick and still my mother sacrificed her plans to take my sick kids so I could push myself to go to this wedding. It was special. Not only was an amazing young couple getting married, but my husband was officiate for the first time. I was proud of all of them. It was simple and beautiful and I was honored to be a part of it in this small way.

Not only did I have my physical obstacles, but I admit I came with a heavy heart. I'm tired. Tired of being sick. I ebb and flow with wanting to live vs. wanting to die. I question God as to why I have to be sick all the time. Not only have I not gone to church because of my sickness, but my heart still distrusts the whole business of church in general. Once you've gone through the hell of feeling outcast and betrayed by a church, it's hard to trust again. I have been so depressed, spinning in this never ending circle of healing the emotional so I can heal the physical, whilst fighting the physical trying to keep my head about me. It's a cruel cycle of catch 22. But it's left me feeling weary. Broken. Unfixable. Futile toiling. Breaking me bit by bit. And it was winning.

But I made it to this wedding. I sat in that congregation of family and friends joined to witness this couple's love for each other. I was proud of myself.

The vows began. They wrote their own and it was the bride's turn. I was so moved by their sweet words to each other but then she started speaking the words that were about to grab my heart. Within her vows she said, "If Jesus believes that marriage can last a lifetime, then I believe it too because I believe Jesus." It was an epiphany for me. Tears fled from my eyes in an instant and I had to take a deep breath so I didn't make too much of a spectacle crying like I was. People must have thought I was being way too emotional. Ha. If they only knew how my heart swelled as I longed for that touch from my Savior. I know the words she was saying were meant for her husband just then, but the power that radiated from her mouth to the ears listening in, I was truly humbled by this young bride's faith. I immediately started to interpret to my heart as I chewed on that phrase. She even kept it a simple mantra throughout her vows. "If Jesus believes it, I believe it too because I believe in Jesus." Oh! My weak spirit! My weak faith! I was being restored with each tear I had to wipe away.

* Jesus said, "Come to Me, all who are weary and heavy-laden, and I will give you rest. Take My yoke upon you and learn from Me, for I am gentle and humble in heart, and you will find rest for your souls."

If Jesus says I will find rest, if Jesus promises restoration then it will be.

Because if Jesus believes it, then I believe it too. Because I believe Jesus.

I have learned much from this experience of being chronically ill. It has stretched me like no other obstacle has. And I had forgotten Jesus'promises. I had forgotten how much I believe in Him. And how much He believes in me.




Thank you sweet Mallory, the young beautiful bride. May He bless you both.

*Matthew 11:28-29

When I Fell and Couldn't Get Back Up: Chronic Illness

How do I explain what's happening to me?

Last July (2014), I fell sick. And never recovered. How do I convey to you, the hell I'm going through?

I lay in bed most days, most hours and watch the world go by.... without me. How do I explain my grief?

Sometimes the pressure and pain and the heavy fatigue is so great that I stare off, listening to my heart pounding and the sound of my breathing, waiting for my last breath to take me away from it all. How do I put into words my despair?

This has changed me. It's changed my husband. Planning things is like trying to write on wet paper. There's a dry piece with Plan B on it. How do I explain my guilt?

I watch my husband come home from his stressful job to taking care of our 5 kids at home, cooking, cleaning.... things that were my job. I am so dependent on him. How do I explain this helplessness?

I'm fortunate to have found a doctor that believes me, even though when I tell him my concerns for worsening symptoms, his response is "unfortunately, this is part of the disease." No answers. Not enough research out there to tell me why I'm, all of the sudden, living in this hell when I was a healthy young woman, excited about turning 30. I'm trapped in a young body that is giving out like an elderly person. How do I say how lost and alone I feel?

I am also fortunate to have friends and family that will lay next to me when they know I can't come to them. Every time I look at my husband, I cry because my dad was right.... I have never felt more loved than I do right now. Those that take me seriously, when they are near me, I hear God whispering in my ear, "See? I haven't left you."  How can I begin to explain that kind of comfort?

But when people look at me, they don't always see a sick person. They hear me speak somewhat coherently and hear me lecture my kids, and flirt with my husband and laugh at jokes, assuming that I'm not sick. They say my 5 kids at home is the answer to my "tiredness." How do I even begin to rant about how offensive and suffocating that can be?

I've had to give up so many things. Things I can't physically or mentally do anymore. My kids watch me in disappointment, too young to be satisfied with my best efforts to care for and love them. I can only hope they will grow up someday, remembering all the times I still held them when they cried and understand that I tried my best to be there and maybe they'll excuse me and forgive the disease.   Injustice. It's like a thief, it has stolen a presence.

I have been diagnosed with SEID (systemic exertion intolerance disease, formerly known as Chronic Fatigue Syndrome) and Fibromyalgia. The most recent diagnosis is Hashimoto's (auto-immune) Disease. Everyone is unique in their symptoms, diagnosis cocktail, and finding their recoveries, that is if they ever do find it. No two are alike. But it's still good company to talk with someone that's going through hell similar to my own. Not a day goes by without thinking about my illness. It's like a chain that's always making my skin bleed, never allowing me even a full day to heal.

I can't even cry my eyes out without pain and pressure shooting through my head.



It is very hard to focus enough to write, so you won't be hearing as much from me here as often as I used to write. I've been put on pause, for the most part, until we can figure out a recovery plan that works for me, if there is one out there. If you know someone with "a chronic illness that you can't see", hug them gently and take them seriously. Talk with them. Respect the boundaries of their disease and help any way you can. Those are the characteristics of the most helpful, supportive people in my life right now.

Value is in the Heart of the Beholder

With spring around the corner, I got this itch to get ahead on some spring cleaning. Leaning along the wall in my bedroom, in vertical stacks, are old frames that I've kept safe for years. I finally decided to move them. Looking at each picture made me reminisce about old times, good times. Then I found "the Jesus picture." Normally, I'm creeped out by "Jesus pictures" but not this one. Since I was a little girl, I've always loved this one. Simple. Drawn with pencil or charcoal, I could never tell. It was always calming to me because the face reminded me of my dad. In fact, when I was little, I remember asking him if it was him. There wasn't a time where I'd pass this picture and not gaze at it and appreciate the artist. Even if it was just seconds, my eyes would lock on it all the time. My mom told me that the picture (with the frame) were bought at a garage sale in Dallas Center 40+ years ago, by my grandparents.

 Wiping away the dust off this old frame that I've kept for my mom the last few years, I picked it up. And in one fell swoop, the back came off, the picture and glass starting falling out as well, and here I was trying to piece it all back together. "Who's bright idea was it to tape the back of this frame?" I thought.

back of the frame. Yep. That's paneling taped to the back.  

I didn't think anything of the blank extra paper that was in there, assuming it was a typical backing piece of paper for the integrity of the picture. But then, the color struck me. "That looks old... really old." I thought.

the "old paper" I first saw. 

My curiosity, as always, got the better of me. I wanted to pick it up, touch it, and see what kind of design may have been on the other side, if anything at all.

I carefully fished it out of the framing. I quickly saw the other side was a type of document. I read the words at the top, "Guthrie County High School at Panora, IA"

"Cool! It's local!" I thought to myself. I saw the name "Mary E. Whisler." It was a high school diploma. I didn't recognize the name at all, but then my eyes scrolled down the document and then I locked in on the date.

"May 13th, of 1887"

Can we just take a moment and do this?....        "!!!!!!!!!"

"Guthrie County High School, at Panora, Iowa. To the Friends of Public Education, Greeting:
Be it known, that Mary E. Whisler has completed the Classical Course of Study prescribed for the Guthrie County High School, and is therefore certified to receive this Diploma. In Testimony, Whereof, the names of the Offices of the Board of Trustees, and the name of the Principal of the Guthrie County High School are hereunto subscribed this 13 day of May 1887." Signed Principal Ray and two Trustees (that I can't for sure make out there names). 

Almost instantly, my fingers were tingling with excitement, very aware of the sensation of aged paper. I've never held paper this old in my hands before. I put it back down carefully and yelled for my husband who was in the shower. He couldn't hear me. My children came into my room wondering what all the excitement was about. I explained to them this precious document, trying to help them understand how old it was. I told them, "America was only 100 years old when this diploma was made!" My ten year old son's eye grew wide, matching my excitement. Then I couldn't wait any longer, "Joshua! (my husband) Get out of the shower! You've got to see what I found!" Oh, the sweet man. He got out quickly and I watched as his face brightened with enthusiasm. We all dolled over the document, taking in all it's age. My husband got to work on the internet to find the name. I contacted my mom and aunt to see if they knew the name. They didn't but called all sorts of family/friends to help figure it out. I remember sitting there with the document laid out before me, just staring at it. Touching it delicately, like you would a painting. And then, I bent down and yes.... I smelled it. Several times. That old rich scent of wood and paper surged through my senses, making my imagination go wild with what life was like for Mary E. Whisler to achieve her high school diploma, likely dressed in those huge beautiful dresses I see in the old Jane Austen movies. This was exciting.

But I didn't know what to do with it. Surely there was a family or a museum that would love a document like this. It survived so well in this old frame with the back taped. (seriously, who's idea was that?)

I found another big frame, in much better shape, and re-framed the diploma to keep it safe. I gave it to my mom and we agreed her the task of finding out where it would best be given. A former boss of my mom's,  Lynnea Andersen, who is originally from Panora, helped Mom find more information. Lynnea called her dad and he gave them names and numbers of the family members of Mary E. Whisler. Mom talked to the only 2 living relatives of Mary and it was agreed that the best place for the diploma was at the Panora Museum.

I can't wait to visit the museum and see that very document that I found, and held, and yes, even sniffed, waiting for the world to enjoy it.


Special thanks to: (my mom) Linda Ruppert, (my aunt) Carmen Cratty, Lynnea Andersen, her father, Mary E. Whisler's family members, and the Panora Museum for taking special care of it from here on out.