Pet Therapy

Still in the hospital at REX. Not feeling well at all today, but trying my best to keep smiling. It’s hard. But nothing like some pet therapy to bring a REAL smile. His name is Duke.. ūüôā




Out Of Surgery!


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…


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…