Takayasu Arteritis Sucks but at least I’m alive

Takayasu Arteritis Sucks but at least I’m alive. Some days it’s difficult to get motivated to get out of bed let a lone get motivated to face the day I have a head of me. For most people it’s not a chore because their body cooperates with them and is ready to bounce out of bed. And then there’s the rest of us who struggle for one reason or another.

Takayasu

To be beautiful is to be yourself. Image: Wishhunt

I have something called Takayasu Arteritis which started a few years after I broke my left tibia, fibula and shattered/dislocated my ankle which never healed and ended up in a fused ankle and Reflex Sympathetic Dystrophy. No one knows how much they want to do something until they can’t do it anymore. Take walking or riding a bike for instance. One day I could ride a bike and the next day I couldn’t. I see people walking and biking all the time and wish with all my might that I could do that and then reality crashes in reminding me, in no uncertain terms, why I can’t ride a bike or walk unassisted. I am able to use forearm crutches and a mobility device for those trips I won’t be able to comfortably walk on. I used to be ashamed to admit I needed a mobility device but one day I realized that pride should be kicked in the dust and comfort was worth it. I was surprised how much freedom these simple things can give you but I do really appreciate them.

Both Takayasu Arteritis and Reflex Sympathetic Dystrophy cause pain throughout my body. The Takayasu causes vasospasm to various parts of my body while the RSD (Reflex Sympathetic Dystrophy) causes pain in my entire left leg from my hip down to my toes. My toes curl up like they are in the wicked witch of the west’s shoes when Dorothy dropped a house on her. RSD is nerve pain so for me it’s like someone is constantly poking me with really hot fire place poker sticks. Ouch right?

I cut my tendons in my right baby finger almost 5 years ago and now, after having five surgeries to try and repair it, I am facing amputation. I’ve been putting off that appointment but I know it’s necessary. If you’ve ever seen my finger you know it’s curled over and both joints are dislocated. My advice for people is not to core a cabbage for cabbage rolls while holding a very sharp kitchen knife.

In February my Takayasu came out of remission due to a lot of stress and caused my heart to start doing some pretty funky things. The doctor’s advice? Slow down and take care of you. He said that my body is trying to tell me something and I better listen. I had two cardiac events which caused me to end up in hospital and have two CT’s (computer tomography) of my heart, lungs and arteries. Fun times right? Okay maybe not so much but at least I survived.

Takayasu Arteritis Make Me Take Life Day by day

So day by day I am going to try and write something here for those who have stuck around at times when even I haven’t been able to. Not sure where this path will lead me but I do have a few ideas.

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  • Puppet Show for everyone

Thanks for sticking by and thanks for remembering how important you really are. I think you are super cool!

Please add me on Twitter:www.twitter.com/voice4silent

Instagram: @djbewy

Periscope: @Voice4Silent

 

 

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