confused

I have been asked many times, well honestly, just once…by Jake…why my blog is called Tubie or not Tubie. He assures me that others are thinking the same thing so I thought I would explain.

To be honest, I started by trying to find a play on the word Tubie. I had several really stupid ideas that I won’t bore you or embarrass myself with. Then it hit me…Tubie or not Tubie…I mean really THAT IS THE QUESTION. In this case for me it represents a few things. First of all, it represents the struggle I went through to make the decision to have the feeding tube placed. It was a huge decision. My options were a gastric pacemaker or the GJ feeding tubes. I have a little grossed out by the idea of the tube but was told that the success rate for the gastric pacemaker for scleroderma patients was less than impressive. Seemed my decision was clear but I still went through an emotional struggle to accept the idea of my new appendage. I would show you a picture of my stomach but honestly, you don’t want to see that. Trust me! So that is the first reason.

The second reason and my hope for this blog is that whether you are a “Tubie” or not, you would be able to read this blog and enjoy it. After all, It really is just the day to day story of my crazy life and I just so happen to have a few serious chronic illnesses and a feeding tube that come into play sometimes too. I hope that it raises awareness of scleroderma and people with feeding tubes so that we don’t get as many looks when we are hooked up to the pump in public via a backpack.

Oh, have I got a story for about backpacks! Let me tell you. So, the pump keeps a charge for 24 hours so that you can “wear” it on the go and not be stuck to the IV pole. Sounds great right? On to Google. You can buy anything on the internet, right? Anything but adult feeding tube supplies. I thought I had finally found the perfect back pack made specifically for my pump style. We ordered it at the low, low price of $98! It came in and it was a teeny, tiny pediatric backpack. I would have looked like the biggest doofus ever, if I was even able to get it on my back. Needless to say, it went back. Being the determined and resourceful woman I am, I decided to make my own. I bought a cheap backpack to start, added a grommet for the tube to come out of the bag to my stomach, attached a velcro loop at the top to hold my feeding bag and a thick elastic band to secure the pump. I have to tell you…it’s pretty cute. But, one was not enough. You will soon learn that I am a bit OCD. I had to buy one for every outfit. I don’t want my back pack to clash with my outfit. I have a black one, a pink one, a green one, beige with pink polka dots, one with cupcakes, even a Vera Bradley one with a rooster print…and many more…you get the picture. Sorry for that tangent.

Lastly, I just thought it was a cute name that would be easy to remember. I hope that I was right with all of my assumptions. Because you know what they say about ASSuming…

I hope you are all enjoying my blog and I can’t tell you how much I appreciate your support, comments and views. I welcome any feedback. Unless it’s bad, than don’t tell me…I just can’t handle it. Just kidding. ALL feedback is welcome.

Now, Jake should be happy that I have explained myself. Thanks for entertaining me!

BTW, heard from the latest dealership this morning. I told you yesterday that while in route to the new shop, my air pressure indicator light came on. Well, when the service manager arrived this morning, he found a completely flat tire. He has a few ideas about what may be causing it so we are making progress. Waiting to hear more. The last dealership that couldn’t find an issue also called me this morning to make sure I was satisfied with the service.HA! FOR REAL? I shared with him that I was not at all happy and they didn’t fix anything and couldn’t find a problem. I bored him with the same broken record message that I have been repeating to anyone that will listen to me “Just because you can’t find the problem, doesn’t mean it doesn’t exist!”  It goes without saying, I will NEVER go to that dealership again for ANYTHING and after all the bitching I have done they hate me! So the feeling is mutual.

Oh well! Hugs and obscenities to them!

But so far, really impressed with my new dealer. I will release their name when all is done. More to come!

Woohoo! My life is a blog!