I fight everyday and I will never stop! 

I will be the best I can be and I desperately try to reflect the okay I say without hesitation! 

With that said, I am going to write a slightly different writing today. 

I have spent a huge portion of July in the hospital because of Gastroparesis, chronic intestinal pseudo obstruction syndrome and colon inertia with mitochondrial malabsorption. When I had a small bowl obstruction on July 4 th then surgery on the 7th and was discharged on the 24 th – I was then re admitted on August the 14 with small bowel obstruction after a Ct scan. I was put in ICU then moved onto the floor and a small bowel barium follow through was done where it it took approx 24hrs to complete then for days it just stopped at the pelvic area and finally broke-up.  I was discharged on the 23rd. During this stay one of the Drs consulting asked me (who had lost a best friend a year ago – due to complications of Gastroparesis ) if I understood what I have in this severe form could be terminal? And that I had beat odds? He meant this as encouragement.I of course responded calmly,yes I understood this. I am not upset I was asked and I even hesitate to write about this experience,  but I do because as I reflect it is appalling that there is this level of understanding in areas of the medical community! Yet, we are fighting, and pleading in every social media avenue available to us to acquire signatures for petitions and a Bill to help find a cure for this torturous invisible disease. 

8 Thoughts to “GP is Not OK But I AM”

    1. So are you my dear Tracy! We will make it no matter how deep these valleys may get sometimes! Thank you for your kind remarks!

  1. I have been diagnosed with it for just over two years now and it hasn’t been easy. I read other stories of people who have had it years longer then I have and they are struggling even more so then I am and all I can think of is to be a bit scared or concerned. There are good days and there are some bad days like today and I found your article it gave me a bit more hope to keep on pressing on. What kind of support is out there online or off line for someone who has just been diagnosed two years ago I manage to do okay with it but the struggle is trying to find ways to stay hydrated. I also have gained weight I read a lot loose weight. I have been working out despite how exhausted and miserable I feel after I enjoy working out.
    Hugs to you for sharing.

    1. Thank you for sharing too,Amanda! I appreciate your kind remark. I am grateful there are so many resources today off and online too! The support groups, the references, the ways to advocate petition, reach out on social media platforms! We are so far ahead than we were when I was diagnosed in 1999! We still have so far to go! I want a cure for this disease! And I don’t think this is an impossibility! I have barrels and barrels of hope, WE CAN DO THIS!!

  2. My 29 yr old daughter has sever GP and has battled more blood infections due to midlines etc then I care to think about. She also has an illiostomy. This has been one year battle so far and has been to great medical facilities like Mayo but nothing seems to be working. This blog I found to be encouraging. She tried TPN but that gave her a yeast infection in her blood. So now they are going to try tube feeding as she cannot quit losing weight and just went through another surgery to fix her tummy and put in a pacer. Any advice would be greatly appreciated. Everyone with GP are amazing people to me with what you go handle day to day.

    1. I will be praying for you & your daughter! Lifting you with love, prayer and gentle hugggs from #GPNation. It is my prayer that this blog along with the #GPcommunity is a safe place for all of us as we #Advocate towards Bills like HR2311 our motility Bill! The #TakeABite4GP http://www.takeabite4gp.org fbtakeabite4gp.org http://www.curegp.com fbcuregp.com #curegp.com are locations with http://www.iffgd.org http://www.agmd-gimotility.org (who does support phone calls – you get on a conference call with others with or caring for those with motility disorders) this may be more than you want- or a repetition of things you already know? Either way? Please know y’all are loved and cared for by a group of #Advocates who want to lift & empower you & your daughter.

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