Wednesday, September 22, 2010

Me, myself and my machine~

I have a nutritionist now!!  YEAH~   Thank you so much to Katie McDermott that made the recommendation to see Merin Kinikini at IHC Medical Center in Murray.  Katie also suffers from Gastroparesis severely and I pray every day that she can feel some comfort.  It's no fun fighting this horrible disease.  Anyway, Merin and her assistant, Hilary, have been my lifesavers.  They have not only taken care of me physically, but they understand me emotionally and that helps me so much.  I am now attached to my favorite machine, that I love to hate, 24/7.  I was given a different formula made from Nestle and it seems to be helping me tons.  Also, with the G tube inserted into my stomach I seem to be less nauseated and I am able to drain my stomach anytime I feel pressure or pain.  I'm glad we made the decision to put the tube in even though it was a 3 day hospital stay.  I'm still in some pain from having the tube in but that is to be expected.  I have pain all the time with my Gastroparesis...  so this is nothing new.

The Standard Examiner Newspaper did an article on me with the hope that we could get some additional awareness to the public about Gastroparesis.  Here is the link if anyone wants to read the article:
    http://www.standard.net/topics/health/2010/09/12/syracuse-womans-life-without-eating-gastroparesis

With the newspaper article being published good news came our way.  We are so grateful to Nestle Corporation for calling the paper and giving them our personal information.  They contacted us and we filled out the paperwork for the formula to come to me free.  Nestle has said they would send my formula to me for free, but unfortunately, this has yet to happen.  I suppose everything takes time and a process of getting things approved etc.  We are still hoping they pull through.  It would be such a huge blessing.  I have gone months without proper nutrition because of my health insurance denying me this.  Even though I despise being hooked up to the machine, at least I now know the food will be there and I have a way of being fed without worrying so much about the cost and what affects it is having on my family.  I will be forever grateful to Nestle.  Please cross your fingers this all works out!

I also wanted to mention the 5k run/1 mile walk we are having on October 9th.  It will be fun to have so many friends and family around and a yummy breakfast that I can SMELL and you can EAT!!

Thanks for being here for me everyone.  I love you!

2 comments:

  1. Chelsea,
    I am so sorry to here every thing that
    has been going on I hop every thing go's well
    for you and get the help.
    Valerie Chase.

    ReplyDelete
  2. You haven't blogged in so long - I hope that things are going okay for you and you've been getting the help you need.
    If you're having trouble getting formula in the meantime you can go to oley.org and the run an equipment exchange, where people with leftover formula or other feeding tube equipment donate and you can get it for free with only the cost of shipping. Plus, you'll find great suppport on the Oley site (it's for people on feeding tubes or IV nutrition) and also on other Inspire groups like G-Pact.

    I have gastroparesis too, and I also have a blog: npo.weebly.com.
    I know what you're going through; it's tough, but hang in there.

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