Tubie or not Tubie

Tubie or not Tubie

Wait…where have I been? — October 19, 2015

Wait…where have I been?

I'm back

What can I say? I have been a big, huge slacker! Nah! Actually, I have been very, very busy partying! Yup! You heard me correctly. I am not usually much of a partier. Actually, I NEVER party! But, let me tell you, THIS chic has been the life of THIS party, really…the funniest one at the party, the loudest one at the party, the best looking one at the party! How can I be so bold? I’ll tell you…I was the ONLY one at the party! That’s right! I have been busy hosting and attending the biggest ever PITY PARTY of ONE for ME!

I NEVER feel sorry for myself. I never allow myself to go there. I know I have an illness. I know I wake up everyday feeling like crap. For whatever reason, I hit a low and I couldn’t pull myself out of it. You know, I do know what happened. I’ll tell you. You all know I have a feeding tube. Well, I started a new immunosuppressant drug and was able to tolerate a very limited and very small amount of food for a very short period of time. If you haven’t figured it out yet, I like to dream BIG! In that small period of time, I had myself convinced I would be able to eat again and have my tube removed. As a matter of fact, I could almost visualize having it removed. Even googling how to take it out and dare I say? Remove it myself? I would never. Or would I? I was picturing my stomach without the stoma and what the scar would look like. How easy it would be to get ready without the tube and gauze. How nice it would be to live without the pain of granulation tissue. How wonderful it would be to dress without hiding this dangling tube. How wonderful it would be to go out to eat with my family or friends and order something other than the “broth du jour”. That did it for me. That was it. I psyched myself up for something that wasn’t going to happen. I know better than to do that. I guess I was being a rebel.

I remember going to bed the night before all of this happened. I was feeling exceptionally bitter and rebellious. I didn’t want to wear my nasal cannula with my oxygen, I didn’t want to hook up to my pump to feed, I didn’t want to have scleroderma anymore, I was fed up with it all. I guess that is normal when you have a chronic illness. I am told by my friends that I should allow myself to feel all of these emotions. I am not good at allowing myself to feel sympathy for myself. I guess that is why once my pity party started, I had a hard time pulling the plug on it since I had never gone there emotionally.

So, the party is over and I am back. I feel like myself again. I am 100% back on the pump. God made that decision for me very clear after a very bad GI week. It was as if God said, “Look here Missy, don’t even think about taking that tube out!” I’ve accepted it…AGAIN, for now. I am still dealing with some dehydration issues but I am working through them.

Since the last time we talked, we had our local Stepping out to Cure Scleroderma Walk in Philadelphia. This is our 6th year participating in the walk. TEAM JOEY was very much present again this year and again won MOST WALKERS!

Check us out! Not everyone made it into the pic sadly. But, they will be in there soon. Thanks to photoshop and my talented hubby.

team joey 2015

And, we raised over $8100 so far this year. I love my friends and family that support me and the Scleroderma Foundation each year! Check out my great shirts. Did I tell you that my awesome husband, Tim, is a graphic artist? He has designed all 6 of my shirts. Funny thing, once we started dating, the shirts got much better…hmmm…lol! But, for real, they did! Each year, the shirts represent something that happened that year, hence the housewife this year, we got married in 2014. Team Joey Tshirt 2015

Back to my absence, I hope you guys haven’t given up on me. Thanks to those that reached out to me in concern due to my silence. I really appreciate it. Exciting times coming up. Tim and I will be celebrating our first wedding anniversary on November 14th, Christmas will be here before you know it, my youngest son will be getting his license in December and Tyler and Kelsey will both be graduating high school in June (and yes – I am already planning the party – Proud Momma!)

No more partying for me. Next time, I promise to invite you all!

Woohoo! My life is a blog!

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