Good days we grab, and bad days we somehow get through

What is my daily life like living with gastroparesis?

My daughter has GP (now changed to global dysmotility). Some days she does OK, and we might do something. Whatever the something is, it will wear her out. Other days she is bloated and distended, in pain, beyond tired has a headache. Friends her own age are few and far between. She is lonely. The family tries there best, making sure to spend time with her throughout the day. Lots of discussions about feeling like she is a burden. We love her so much she could never be a burden. But our love is not enough to change the amount of grief we all feel. She smiles and tries to do her best. But Moms can tell when it a real smile and a smile that is an attempt to cover-up how rotten she really feels. Each day we face our fears and do our best. Good days we grab, and bad days we somehow get through.

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Lots of planning around food

What is my daily life like living with gastroparesis?

Lots of planning around food, especially if I’m going out for the day or traveling. I hate getting sick away from home. Cancelling plans at the last minutes due to GP related pain. Avoiding events that are food focused.

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The constant fear and worry never stops

What is my daily life like living with gastroparesis?

I don’t have GP myself but, as the parent of a daughter with GP I can say this: every day is a roller coaster ride. The constant fear and worry never stops. The knowing about the pain, bloating, nausea, etc., looking and seeing that she’s up and dressed and headed to work and still knowing she feels awful is there. The guilt you feel because you can’t afford to let her stay home eats away at you. Knowing that at any minute it could all change again. One day is good, the next three are bad.

She doesn’t scream out in pain any more, not because she doesn’t have it but, because she knows I can’t help her. She hides her pain and the other symptoms behind a fake smile. She gets up, puts on her makeup to hide the circles beneath her eyes and the pallor of her skin. A little blush to add color to her sunken cheeks and lipstick to hide her cracked and dehydrated lips. And, she looks good, she looks….normal but, I can see the pain behind her eyes, I can see the smile that just isn’t as bright as it used to be. The anxiety she hides under a false sense of confidence due to the makeup and clothes. The loneliness she feels because people really don’t understand. The frustration she feels when people ask if she’s better now. The disappointment she has with herself when she just can’t do it today. The guilt she has when she has to call out from work once again due to this illness. I see it all, I bear the brunt of her anger, her frustration, her sadness, her loneliness, her pain, her guilt, her desperation and her anxiety. I feel for her, I advocate for her. She is never a burden, she is not any trouble….she is my baby. Life is not easy, her life is damn hard as is every life with this awful disease. No, I don’t have GP but, my life is affected every day because I love someone who does.

Strength to all the GP warriors out there.

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Bad days are spent in bed

What is my daily life like living with gastroparesis?

I’ve had GP for 14 years 9 months. I’m on disability. After 2 years I was able to go back to work. Only 10-20 hours a week. I wake up tired, nauseous and in pain. I take my meds 6 of them, 2 anti emetics, 2 pain meds for my neuropathy, 1 for GERD, 1 for my anxiety and 1 dilaudid. I also take a few hits of my medical marijuana. I change my jtube dressing and take my blood sugar. I usually go in to work between 11 and Noon. I don’t set an alarm unless I’m driving a resident to an appt. I love my job. I am an LPN at an assisted living home. I mostly do paperwork like making sure all the charts are together and purged and accurate. I complete forms and contact physicians offices. I get to spend my days with some of the best humans on the face of the earth. They are the reason I get out of bed.

I also get my grands once a week. At the end of my day, oh yeah, I cannot eat all day if I’m working because I leak around my jtube. So, Mondays I go to my psychologist. When I get home I go lay down and hope the pain softens. My hubby John cooks us dinner. I spend the evenings watching TV. That’s a good day. Bad days are spent in bed with my vape pen and use a lot medical marijuana. I take meds for my neuropathy and anxiety in the afternoon. At bedtime I take the meds as in the morning plus 1 for my diabetes, 2 for cholesterol, 1 for allergies, 1 for my blood pressure, 1 for my rapid pulse, 1 for depression/nausea, change my fentanyl patches and my scopalimine patch. I would love to do normal stuff but I can’t. I have to work to Medicaid. With 10 specialists I cannot afford the $50 copays. I only hope I can continue to work. GP changed my life so much. My stomachs name is Harvey. I named him back in 2005 so that when I’m having a bad flare I have someone to yell at! ???

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It’s Hard To Make Plans

What is my daily life like living with gastroparesis?

I have anxiety, depression, fatigue, muscle cramps, pain, nausea, diarrhea, & I never know what my day to day will be like , It takes a lot out of me when I shower & do things.. It’s hard to make plans because I never know how I’m going to feel like that day. Gastroparesis sucks, I had a life with my horse that I’ve had ALL my 13Yrs. I’ve had a daughter that I missed out on because I was always going to the Hospital or Dr’s, or just staying home because I would feel awful. ????

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