Baldylocks Exceeding Hyperdrive – guest post

Ready to fly ...

Ready to fly ...

This week’s Guest Post is lifted from the blog The Adventures of BaldyLocks written by a young artist and designer living on the west coast of Canada.  Baldylocks is also an AML (acute myelocytic leukemia) and  bone marrow transplant survivor.  She is fighting her way back and fighting hard.  I thought that the grit and determination of her post would do us all some good.

Exceeding Hyperdrive

I’m not very good at being in the middle. If I do something I have to put in a %110 or nothing at all. This cancer trip has been so hard on my inability to accept personal mediocrity. I realize to other people I look whatever way they see me but personal perception is what it all boils down to in the end. I have a hard time being who I am now.

I see me. I see what I can’t do. This triggers me to push harder. Too hard maybe.

I have such a problem with muscle weakness and tripping and dropping things. I used to have such a strong capable body. Participating in the elderly arthritic water fit class was a great way for my body to begin to rebuild but having my ass kicked by people over 80 was a bit emotionally challenging at times. What made it more emotionally painful was seeing the weight room behind glass, behind our instructor. Every Tuesday and Wednesday I would see people my age breaking a sweat, lifting weights and working out with exercise balls. I couldn’t even hold one of those at the time.

I wanted so badly to be in there with them and would occasionally resist crying in the pool doing my arm lifts. At the end of the session I would have a hard time getting out of the pool. The period of weightlessness would make my body feel crushingly heavy at the end and sometimes I could hardly walk. I persisted. Eventually I could keep up with the class but I would always spend the in between days exhausted in bed. Every day I would try to at least leave the house to go around the block.

I went one time with a friend to a beginner ball class. They did things my body would just not do. I discovered I couldn’t just get off the floor and I couldn’t lift the bar they held. As the class bounced and moved their feet to the music and manipulated the ball I struggled and moved like a tortoise and had to just try and not fall on the floor. The instructor approached me at the end and asked if I had physical impairments. Despite not being a crier, I cried.

This was just a few months ago. Four months ago when I moved I couldn’t manage stairs very well and I still have trouble. Then I decided to walk some flat trails at the bottom of one of our mountains. My stubbornness kicked into high gear and I went up to the top of the mountain! I received such a rush from standing on the top.

I kept going, the next day and the next. It feels like my heart is going to explode when I hike up there. Manipulating my feet to get over the rocks is incredibly difficult but I can do it. Next thing I know, I ran off to Calgary. I was immobile for three days after I drove there. When I got back I went up the mountain the next morning.

It was a dumb ass move but I have a severe stubborn streak. My legs stopped moving half way up but I managed to get to the top and then could not get down. I held trees, dragged my legs over rocks and down trails, honestly I almost had to crawl down. I was hoping to see a random stranger and ask them to help me down but no one went by.

So, I made it. I gave myself a few days off (in bed) and began going again. I finally realized this was so hard on my body that I discussed it with my GP. I was really hoping she would give me the green light for my craziness but she didn’t.

She said I can’t go from zero to 60 because I could severely damage myself with muscle skeletal injuries or what not. I told her about the rush I get from it and how I am a goal and achievement oriented person. She said to slow down! My goal should be to work my way there in a reasonable way that would help me have more good days. My cycle has been to do something and then crash and recover, do something then crash and recover.

I am so impatient now! So I gave up the mountain and have been working with the hoop. I have prednisone caused arthritis and my hips and hands ache. I bruise easily because my platelets are low. I fight fatigue and vascular problems in my extremities. Every part of me seems broken but I can spin the hoop. Now I’ve locked in on it and keep practicing, have bed rest and practice some more. I’m utterly exhausted.

But just a couple of months ago I couldn’t do this. Now I am obsessed with this and intend to be excellent at it. I finally feel like I can be good at something again, heck, I keep showing my kids and making them watch my new moves. They are such good sports and are so patient with me.

I guess we are all our own worst critics and those with chronic illness all have our own ways of dealing with what we are going through.

Personally I can’t believe I can do this. I know I will be killer at it soon because I keep practicing until I drop. FAILURE IS NOT AN OPTION…and it’s fun.

The Adventures of BaldyLocks

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About Dennis Pyritz

Dennis W. Pyritz, RN, BA, BSN, has been a cancer nurse since 1987 and a cancer and bone marrow transplant survivor since 2004. In December 2001 he was diagnosed with t-cell prolymphocytic leukemia (T-PLL), a rare aggressive form of chronic lymphocytic leukemia (CLL). Dennis was treated with the then new monoclonal antibody, alemtuzumab (Campath) as this disease has a median survival of 7.5 months. He achieved a 26 month remission but relapsed in February 2004. He was retreated with Campath and went into a second remission. In August 2004 he underwent an allogeneic peripheral blood stem cell transplant with his brother, Mark, as donor. Dennis has remained in remission since - a near miracle. Throughout his career as cancer nurse and patient, Dennis has had the opportunity to speal to both lay and professional groups. Dennis has spoken on cancer topics and survival issues across the country as well as in the United Kingdom, Norway, Austria, Portugal, Honduras, Panama, Guatemala, Trinidad, United Arab Emirates, Jordan, Cyrpus, Israel, and India.

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