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.