Out Of Surgery!

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Officially a tubie! ¬†Started feeds a couple hours ago. ¬†Hard to describe what I’m feeling right now…this is certainly a transition. ¬†Surgery itself went well, but we have run into quite a few complications post-op. ¬†Will try to update later when I am not so sick.

Last Few Days Tube Free…

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On Monday, I am having surgery to have a GJ feeding tube placed. I will officially be a Super Tubie like so many of my beautiful fighter friends. ¬†I am nervous (to say the least), but I am very excited to gain back some weight and strength. Rough infusion today as I randomly started vomiting and then had a full-blown dystonic reaction– humiliating. But I love my infusion nurses and the amazing volunteers here! Mrs. Paula gave me this little bear and a hug and told me she has been praying for me. Really helped my heart and made me smile so big! Things have been difficult and scary lately, but I am so incredibly blessed. ‚̧

Giving In Is Not Giving Up

This week I got my first ever wheelchair. ¬†We found it on Craigslist and it just so happened to be the perfect fit for me. ¬†Years ago, if someone suggested I’d need a wheelchair, I would have laughed. ¬†But now? ¬†It’s become reality. ¬†One of the major challenges of having Dysautonomia is that I never know when I barrage of unpleasant symptoms will hit me. ¬†I might think I’m okay, then a second later find myself lying on the ground. ¬†My blood pressure tanks and I faint, often without warning. ¬†Sometimes my legs are too wobbly to walk or I lose feeling altogether. ¬†Even on ‘good days,’ I can only walk so far before I am overcome with crippling fatigue and pain. ¬†As you can probably imagine, this makes going out in the ‘real world’ and doing ‘normal’ things pretty difficult…

My mother tells me that I shouldn’t accept this as my reality…that if I own it, I will never escape. ¬†At first, I really dwelled on her words…but now I can boldly say I disagree. ¬†Honestly, my using a wheelchair has been harder for others than it has been for me. ¬†People either pity me or feel uncomfortable seeing me using it. ¬†I wish I could tell people not to feel that way…I mean, I do not feel sad about it or feel sorry for myself. ¬†It’s a pretty easy transition, and has actually allowed for a better quality of life. ¬†I understand where my mother is coming from: to some, it may appear to be a step backward. ¬†But it is quite the contrary. ¬†It’s a step forward- an opportunity to regain some control over my life.

I am constantly embracing new realities and trying to adapt to them the best I can. ¬†I am learning how to continue living and thriving despite unfortunate circumstances. ¬†The past few weeks, I’ve learned that “giving in” is NOT giving up. ¬†Accepting new ways of life is not losing control…it is gaining it. ¬†Whether it’s standing, sitting, walking or rolling– I plan to live my life to the fullest.

Post Appointment Thoughts…

I’m really worried about Sharon. ¬†She just seems so stressed and worn lately. ¬†Maybe I’m reading too much into it…I tend to overanalyze people’s expressions, body language, tone, etc., especially when it’s someone I care for deeply. ¬†But she just seems so exhausted. Older, somehow. ¬†I don’t like what this new place is doing to her…