Today my frustration toward my health and healthcare is building. While I am thankful & blessed that I have been cleared and released from the Cardiologist and Neurologist, I still sit with the continued Gastroparesis and other Digestive System issues that seem to keep increasing in intensity!
I am able to handle less and less tube feeds - averaging 1 can a day if I'm lucky. This is the least amount of formula that I've been able to receive since having my GJ feeding tube placed in May 2013. Orally, I am also receiving less than I have in the past, averaging less than 1 cup of liquid a day w/ an occasional popsicle or cracker. All in all, my complete caloric intake is still around the 500 cals/day mark, less on days when symptoms are worse than the "normal." What I just can't seem to get people to understand, including my husband, is the more I try to push orally or via the tube the worse I feel. The nausea and pain spikes, keeping me under a heating pad or in a hot tub to find some relief. If I go all day and run no feeds and have no oral intake, I feel much better with exception of the fatigue and dizzy spells keeping me down from lack of nutrients. I am so confused and actually becoming so frustrated with my self and my health. My family (especially parents) keep trying to persuade me to get IV fluids due to my lack of fluids. Some of my medical providers have told me that I am dehydrated, that my muscle cramping, lightheaded/dizzy spells, and fatigue are most likely a result of dehydration and/or malnutrition. I completely agree with them. Unfortunately, and this is what gets me, no one can offer a solution. I hear, "push more fluids" but to what point do we say, enough is enough, and decide to create a true action plan that may actually work, because me "pushing fluids" is not successful right now. I admit I don't want to become dependent on IV fluids, or as one Dr said "don't want to become a machine, already have a feeding tube", but if IV fluids help me feel better & allow me to actually function again, isn't it worth it? Wouldn't it be worth a shot to see the IV fluids would knock away my lightheaded/dizzy spells, help energize me enough to stay on my feet, and provide me enough bodily fluid to help my intestines move things along, which in return would allow more formula to be taken in, which will then allow more strength for living? I don't know. I don't have a medical degree and definitely don't fully understand my body. All I know is that I am not getting better, if anything I'm slowly sliding downhill and in the wrong direction. I want and need to feel better now! Eventually, I will have no choice but to say enough is enough, I'm done! I would much rather my medical team and I to figure it out before then.
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Trisha while none of us walk the exact path, while traversing this challenge called #Gastroparesi? I can only tell you r running my hydration at home it is Zias if someone turned on a light switch! And with the codicil, that we are not Dr's, nor qualified to give help! I can only tell you I feel" new" now for the longest time I hid what I was doing like a a new other breastfeeding and not wanting to disturb anyone! There are rough spots, but for the most part I feel " rejuvenated"Do what. Your body is telling you Trisha ! And turn that crisis Into its opportunity!
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Trisha BundyA proud mother, educator, Gastroparesis & GI Motility Disorder Advocate, Like my content? Want to thank me with a small token of appreciation? https://www.amazon.com/hz/wishlist/ls/1LH7R639ORBML?ref_=wl_share
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