DC in my WC

So...we went to Washington DC in June for two reasons. First, to attend the UMDF conference and advocate for Mitochondrial Disease on Capitol Hill and second, for a family vacation. If you've ever been to DC you know how much you have to walk...EVERYWHERE. Luckily, I knew this ahead of time and for the FIRST time I took my wheelchair on vacation. It was a psychological hurdle. Am I handicapped? What does that mean anyway? Years ago, I naively thought that wheelchairs were used only by people who literally could not walk, that and the injured or elderly. I'm not injured or elderly and I can walk, even run, but I find myself in DC in my WC (wheelchair).

I am purposely calling it MY wheelchair to get used to the sound of that. I bought it at a second hand store in my home town last year. I used it when we went to the fair last summer for the first time. It saved me from exhaustion and I was able to do everything I wanted without pooping out or having to recover for days. I found gratitude in that, but the wheelchair felt so foreign and strange. I can walk. I wonder what people are thinking? Does it surprise people when I stand up? Will they let me ride the rides when the see me roll up to them in a chair? Am I lazy? Am I that sick?

I had the "opportunity" to take my chair on another vacation with some friends earlier this spring and I just couldn't get myself to do it. But I knew, I KNEW, I would have to befriend myWC for DC.

I had the same questions in DC that I had at the fair last summer and more. But overall, it again was a blessing. I was able to do so much more and enjoy my family and vacation because I used my energy wisely.

I had an interesting experience I want to ponder with you. We were stopped on a sidewalk ready to cross the street when a family came up and stood by us. The mom looked at me, smiled and said "I am so jealous of you and that ride right now. You are so lucky." I smiled and said I could understand her. But her comment (meant to be kind) was naive. Think about it for a second...if someone is in a wheelchair, they live with restrictions, limits, disease, aging, frustration, it's not a fun ride.

It's not a fun ride. I wished I had taken the time to hand her a card I have with Mito information on it. I wished I had taken the time to say, "I understand, but I'd rather be walking." I want my body to do what I want it to do, and for a control freak like myself, being pushed around isn't a fun ride.

On the flip side, it is a blessing. I saw DC with my family...in my WC. For that I am so grateful! I wonder what others using assistive devices feel and think. I know I'm not alone in my thoughts. Feel free to share.

Betrayed by your body

To those affected by chronic illness this will sound familiar. To those who don't this concept may be foreign and taken for granted. I fear my own body. I don't trust it will accurately tell me my limits, nor that it will take good care of me. My body has betrayed me as if a lover betrays their love.

Over the years of having a chronic illness I have watched the difference build between me and others with "good" health. There is a lot I took for granted when I had good health. My question to myself is how do I not take for granted the health I do have as of today?

It is like a light bulb has been switched on for me that had never been on before. One day, I was in fear of my body, exercise, spending energy because it always backfired and put me in a relapse of symptoms that lasted for days if not weeks. The cost of trying physical activities were too high. But in that light bulb moment, I realized what was really holding me back from trying anything physical. Fear of betrayal. That my body would betray me. It was easier not to start, than to maybe find out that I couldn't do _________________ (fill in the blank). Realizing that my challenge was more emotional than physical has brought me to a new place, a place where I am willing to risk again. A place where I am willing to let myself go slow and ease back into a relationship with my body. A slow and steady climb back up the hill to healing emotionally and adding better health to my body as well.

It was like I was angry at my body. It failed me. I never blamed God. I never felt punished for sin. But I hated my body. I never was a big fan of it in the first place, but when it got sick and limited me, not only did it crush me physically, it hit emotionally. It crushed my spirit.

God is the lifter of my head. He is my healer. I have not been healed of my chronic illness, but God is healing me. He is healing the betrayal that set in years ago.

So the light bulb went on...and I went to the gym. My body is tolerating well what I lovingly call my "micro-mini" work outs and I am gaining trust in it again. It feels good. My body is the dwelling for the Holy Spirit. Hating it isn't going to bring me closer to God. I must accept it and be thankful for what I have. I am there today. I am thankful I can get on a bike for a few minutes. I can do activities with my family. I am able to get out and do things most days. I am not taking that for granted anymore.


1 Corinthians 6: 19-20
"Do you not know that your body is a temple of the Holy Spirit, who is in you, whom you have received from God? You are not your own.; you were bought at a price. Therefore honor God with your body."

No Lord, I didn't get it, but I am getting it. Please forgive me for hating the body you gave me for so long. Even in sickness I am grateful for this body for it does many things for me. I now give it back to you. Work in and through me to accomplish your good will. I am so excited that my little (in the eyes of the world) workouts honor you and give you pleasure. That makes me smile. Thank you as always for meeting me right where I am and showing me where to go. In Jesus Name, Amen

Where have I been?

I will spare you the details, but I've been on quite an emotional, physical and spiritual ride. For reasons that I am just now figuring out, I ditched this blog two years ago in spite of some people asking for me to write more. I felt inadequate. I didn't feel as if I were making a difference. My health was intimidating me and I didn't know how to share that. I want to be a beacon of light, but sometimes life with chronic illness just gets dark. What I have come to realize is that you are probably feeling the same way. I don't need to filter, to be helpful I need to speak the truth.

One of the journeys that led me far from blogging was my return to work. I love my work and I feel so blessed that I still have the health and mind to so do. At the same time, work has pushed both my body and mind past the point of healthy and so you will see that struggle come up from time to time in my writing.

I decided a year ago, I was going on a journey to leave behind any self-loathing, low self-esteem, disregarding of myself in any way behind. God had a very strange plan for that one. He asked me to be in a pageant. Yes...Mrs. Oregon International to be exact, the dress, crowns, stage, and all. Good grief! What was HE thinking? I'm not a beauty queen...or was that what He wanted to teach me? I am a beautiful queen in His eyes! Yes, as the long story turns out, that is what He wanted to teach me. He blessed me with scriptures, opportunities, a gown, hair and makeup and I walked out on that stage before my God and was proud of who he had made! In a place where I was being judged by earthly judges, I felt my most confident in the Lord. It was a pardox in the making. I don't know how it really worked,  because I didn't win the crown, but today I feel like a princess. A beautiful creation. I see myself a bit better through God's eyes and in that, I am both chosen and free, stronger and weaker, alive in him an dead in my flesh.

Speaking of flesh, my new journey. I did not get "in shape" for the pageant. I was by far the heaviest one there. That's what made my inner transformation even more miraculous. But now, I am dealing with this flesh, my chronically ill body. I will write more later, but I will leave you with this. I am proud of the 5 minute workout I did Tuesday, the 8 minute one Thursday and the 10 minute one today. I have been called to take care of the health I do have and quit taking if for granted. No worries. My blog won't become another work out blog, there are plenty of those. It's still me here...but you may hear me talking about it now and then. Until later....blessings on you all.

I'm back! So glad to be here again!

I woke up feeling awful today, but today was a special day. I started an exercise program to optimize my health while living with chronic illness. I have seen a few friends bodies decline and it pulled me out if denial. I need work with my body to maximize the health God has graciously given me. If you have a fatigue related disorder you know how scary exercise is. If you are exhausted, how do you spend energy to get more? The math doesn't add up. I'm on a journey as a Guinea pig to get more healthy and help inspire others too. Join me again. I'm back. It's good to be here again.

Hanging Up My Dancing Shoes

We recently went to a conference for the United Mitochondrial Disease Foundation. I have not mentioned what illness I have up until now because I want this website to be open to anyone suffering with chronic anything...this article though is about my illness, mitochondrial disease. The blog is still of course, open to anyone and chronic anything.

Mito what? Those two words are very powerful. They are powerful, because I hear them a lot. I  also at one point said them myself. But now, me and mito are good buddies. Mitochondrial disease is a rare disease that affects both children and adults in many different ways and in many different levels of  severity. I predominantly have skeletal muscle and GI problems. I have tremendous fatigue and pain on a daily basis. I have what I call my "new good" days which is when I only feel tired and some pain, to other days where I am bed ridden and in a great amount of pain. There is no cure and really no treatment for this disease. There is also a lack of research, physicians, and general knowledge in the public about mitochondrial  diseases. Mito what? I bet you might have said the same thing.

I want to bring awareness to the United Mitochondrial Disease Foundation. These are wonderful people who work to help families, create awareness and promote research. You can find out more about the disease and pass it on at http://www.umdf.org/ Breast cancer has a pink ribbon, we have a kelley green one. Breas cancer has big money, we don't. You can buy a pink toaster and donate money to Susan G. Komen, but to the UMDF? Buy a green toaster and you just have a cool green toaster. We need to have the awareness and finances of the wonderful Susan G. Komen Foundation, but we aren't there, YET.

So why did I title this article hanging up my dancing shoes? Well, I'm wondering if I have to (metaphorically). That is pretty pessimistic, or is it simply realistic? As many know, chronic illness robs a person of certain things in life depending on the illness and severity. I once was nicknamed the "Energizer Bunny" but now you can just call me the "pooped out princess, " or "Galactic Acid Girl" as we joke in my family*. I am learning that I have to conserve energy almost as if saving pennies to buy a gum ball. I save up bits of energy to do what I want...take my sons swimming, to the library, go out with friends, do crafts, have a date with my hubby, attend a wedding, even simply visit with a friend. It is weird to get used to this. I still am not. I think though as a part of healing my spirit, I need to accept that sometimes I need to hang up my dancing shoes. I will never be the same, so how do I cherish what I do have and use my energy best?

The answer: I don't know. I am learning my limits. I am also fighting my limits, which takes energy. I think I need to accept my limits and learn to thrive within them. Goodness, this isn't just hard for me, it is a full on war raging in my mind and spirit.

I get so fatigued, so easily that I can't fully participate in the things I want to. This makes me sad. I feel like I am missing out. It angers me. I feel like I let my children down. I feel ripped off. When I force myself to do things I don't have the energy for...I pay for it and so do those around me, many times for days. When I sit out, I spend energy being angry and upset. Acceptance...isn't that the key to all our problems? The 12 steps say so. What do you think?

So, what does is really mean to hang up my dancing shoes? Let's run with that metaphor a minute. If they are hung up, they aren't in a box, shoved in a corner. I sure can't stand to spend the rest of my life boxed in and parked on the couch. But my dancing shoes are hung up...that implies they get used sometimes. Notice, they are not on my feet, they are on a hook. But they are visible, waiting to be used at the right time and the right place. Sometimes I might have to let them get dusty. They might not look as worn as they used to. But when I get to put them on and "dance".....aaaaaahhhhhhhhh! The beauty of the moment is one to be cherished and remembered. I still have my dancing shoes and I can still enter the dance, but the dance has changed and I must change my heart and mind to go along with it.

Acceptance? Mito what? To dance or not to dance? These are monumental questions in my life. What are yours?

*A side note about Galactic Acid Girl. One night at dinner my youngest son asked "so you have too much galactic acid in your body that makes you tired and sore, right?" Oh, the words of a child! He meant Lactic Acid and he was right. I love the humor of calling myself "Galactic Acid Girl" a new superhero! Laughter is good medicine.

Submission NOT Resignation

In this article of Chronic Compassion I have taken liberty (in the parentheses and italics) to add a few comments that run through my head as I read this scripture. I hope you enjoy a short trip through my brain and the Bible. Well, at least I hope you don't get lost.

Isaiah 48:17-18
This is what the Lord says (I think this might be good to pay attention to if God says so) -Your Redeemer (for sure!), the Holy one of Israel (oh how I love the story of the Israelites. I consider them my ancestors by faith): "I am the Lord your God (yes you are!) who teaches what is best for you (when I actually listen. Sorry. I get so distracted), who directs you in the way you should go. If only you had paid attention to my commands (if only I had trusted you were giving me commands that would yield fruit through this season of chronic illness),  your peace would have been like a river (peace...I have had the goal of peace in the midst of this life changing ordeal, but I have fought You so much. I love a small rushing river. The water sounds and looks so beautiful. The water moves without restraint, gliding over the bumpy paths of rocks, twists and turns. I've felt my journey has been more like climbing a mountain...trying so hard to make sense of the trail, climbing slopes too steep for my equipment, forgetting to stop and see the beauty, and resting only because I have to all the while missing the song of the crickets, frogs and silence), your well-being like the waves of the sea. (The ocean Lord...the place where you and I meet face to face. I find peace there. What a beautiful metaphor for me to consider. Thank you. I need to get to the ocean more often. I long for You. I want off the rocky, steep mountain I've been climbing and more time at the ocean where we once surfed together. I remember surfing although it seems so long ago. The waves would crash, but they felt like a blanket of your love covering me. You say my well-being can be like the waves of the sea? I love the waves of the sea Lord. They are guided by you, they have a rhythm and a purpose, but also have a way of being that no human can really predict. They bring beautiful things to the shore like shells, agates, wood and rocks. The waves curl and in that curl there is a cave of protection, which reminds me of king David seeking refuge. Though it seems chaos reigns on the outside, inside the curl there is beauty many don't chase to see, a quiet only you can create. The waves of the sea...are my destiny.)

Now...my reflections on my reflections. Lost yet? I hope not!
So how do I get off the mountain that I am not called to climb anyway? I want to find the water where I can find peace and well-being. I remember in the verse above, God saying something about paying attention to His commands because He is trying to teach me what's best for me and direct me in the way I should go. But so many times on this journey, I see where God is taking me and I don't want to go there. I want to go back...back to a life without pain and fatigue. Back to sleeping without medications. Back to an identity and profession I was proud of and worked hard for. Back to being able to be busy, stay up late, not get rest, yet still bounce back like nothing had happened. Back to a life where medical expenses didn't replace vacations. Back to hair appointments instead of doctor appointments. Back to when "things made sense and I knew who I was." Back to volunteering for my kids instead of volunteering blood samples and body tissues. Back to having some control, or at least thinking I did. Back to MY life...or do I?

MY LIFE (interesting to contemplate)...is now. I got it in my head that this obeying God and finding this peace in Isaiah 48 meant I had to RESIGN to a life of chronic illness. But at second look, I see that isn't the path to peace. The path is SUBMISSION. I submit to God's leading, teaching, direction and way. He, after all, is way, way smarter than I.

So, I simply and daily remind myself of the waters I dearly love that represent peace and well-being. One lesson, one direction, one moment at a time I seek His ways...and as the song goes~I trust and obey, for there is no other way. I will find peace and well-being when I trust and obey.

Prisoner of Hope

Do you ever feel like a prisoner in your own body? Are you a prisoner to your illness, to pain, to hopelessness, to displacement, to fatigue, to financial burdens, to the difficult task of daily life with chronic illness? If you quickly said no…let’s think again. Let me rephrase, at times do you feel imprisoned by chronic illness or chronic pain? I do. There are days where I have felt claustrophobic in my own body…now how do you resolve that problem? You can’t just slip out of your skeleton for a while and try on a new one.  At those times I just want a way out of the pain and fatigue; I want to run away from myself. But I can’t…so I know I have to find another way to deal with the claustrophobia-the imprisonment in my own body that doesn't work like I want it to. The only solution I can find is my Lord, Jesus…only he can set me free from a body that at times feels like a prison and not a blessing. I’m not talking about death, that will come in its time, but until then, how do I live…I mean REALLY LIVE! I’m not o.k. with living a boring, sick, self-centered life. I want to live. I want to be alive. What does that mean for you? I can share what that means for me.


As a counselor, I can say that one of our favorite tools is to teach people how to reframe their circumstances, to find a better way to view their situation that makes it manageable, or even fruitful. Right now it is 4:40 in the a.m. and I am not up because I want to be. It is just another night of insomnia, one battle I struggle with on this journey. But I finally got out of bed and decided to open my Bible and see what the Lord wanted to say to me, and maybe even you. I got a reframe, not from an earthly counselor, but from the counselor of counselors, our Lord Jesus himself. It came via the prophetic words of Zechariah. Are you ready for it?

Zechariah 9:12 says “Return to your fortress, you prisoners of hope; even now I announce I will restore twice as much to you.” (NIV)

Prisoners of hope? I had to pause there. What does that mean anyway? Then I thought of how I feel imprisoned by my body at times and shazzam (!) there was a reframe. I am a very hope filled person generally, but when I feel trapped in my broken body and tough circumstances I sink into hopeless pretty quickly. Instead, now I can turn my thoughts to my fortress (my Lord) and become a prisoner of hope in Him and his promise that he will return to me twice as much (I won't even attempt to guess what that may mean).

I love that phrase…”you prisoners of hope,” it just stopped me. It was so unexpected. But as I ponder it more and more, I realize I am a prisoner of hope. In Zechariah 10, the prophet reminds us to pray to the Lord for our needs because he is our creator and knows us intimately. We can pray for healing, financial burdens to be lifted, more energy, a day without pain, but most of all we can ask that he make his presence real to us, so that if we are a prisoner to something, at least we are imprisoned by Hope in Him! Prisoner of hope? You bet, sign me up!