Gastroparesis Awareness

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Lovely, I was just reading a post on Twitter from the EDS Association reminding us it was Gastroparesis Awareness month. I replied I was pretty sure I had this, was awaiting diagnosis. Someone snarkily replied it was dangerous to diagnose yourself from the internet, and did I have tests scheduled. I replied I was trying, I had other priorities, which got, if you’re so sick, you should have your priorities in order. My retort was about needing my energy to bug my pain doc about my neurologist at the moment, but under normal circumstances, definitely.

It’s such a shame there are so many scammers out there we have to be suspicious of everyone. That really sucks.

I got partway into my makeup and just ran out of steam. I couldn’t go on. I’m dead. I hate using that analogy, but my lips are pale and I’m drained. I feel awful.

Anyway, back to gastroparesis. I have almost all the symptoms. It involves very slow digestion. I will eat at lunch, still be full at dinner. If you overeat, sometimes you vomit the remainder up. I am not doing this much anymore. I have a very small appetite, am constantly, well mostly, nauseated. My stomach is often bloated. Constipation, cramps, constant heartburn. I can’t think of much else.

My current diet consists of:

  • My morning coffee
  • Oatmeal for breakfast (the bad kind)
  • Homemade nachos with corn tortilla chips, melted lactose free cheese and low fat sour cream
  • glucose-fructose free iced tea
  • gluten free pizza
  • Chicken Tacos
  • Chicka Chicka Boom popcorn
  • Rice Crackers
  • Homemade hamburgers
  • Homemade hash browns
  • Chocolate (This is not necessarily FODMAP friendly)
  • Chocolate chip pancakes with syrup

 

  • I have been munching on lightly salted chips the past couple of days, as it quells the nausea. It worked during my pregnancies, my first one I lost 30 lbs! I was still 30 lbs heavier than now! ๐Ÿ˜ฎ

This is all the food I would eat in a normal week. Other things we have in the house I can have are:

  • Lactose free ice cream
  • sorbet
  • Rice pasta with garlic and onion free sauce (gag)
  • Husband has a mini storeroom of chocolate in the basement, apparently. ย For me.

I love my chocolate and popcorn, but I don’t miss my food. Since I started feeling better for the most part while on FODMAP, I don’t miss eating tons of things. I’m not often craving foods the way I used to, though I sometimes do get hungry. It takes a long time, though.

I hope I can get a gastroenterologist soon. I’m trying to think, and there just aren’t any other foods I eat. ๐Ÿค” Nope.

โค

 

Heart Test

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I had a heart test this morning. I needed to have one before they would let me into the EDS clinic. So there should be about a weeks wait before I see the results of that. They expect a six month wait for the clinic, so I just need to hang on. I hope they can do something, because I feel like crap. I don’t have much of a life going on, and even the cab ride was pretty tough.

The test itself was fairly intense. I’m used to the quick EKGs where they clip you on and monitor for about 5 minutes, but she did a full ultrasound. I brought husband along, as he’s good at Intel, he’s my sherpa, and I am not too steady at the moment. He helped me change, I just had to get naked from the waist up. I lay on my left side and then my back while she spent at least 20 minutes with the ultrasound on my chest.

My husband couldn’t figure anything out. He said some of the notes said my heart was of normal size, which sounds good. I’m curious as I’m now sleeping up to two 24 hour periods a week. That isn’t normal. It could be pain, though. My head still hurts a lot. My neck hurts. I just try and do things despite the pain. If I don’t, I will just sleep all the time. That’s no life at all.

Still waiting on the neurologist.

I did get a rubdown in Voltaren before we left, and it really helped. I need a cabana boy. Someone to bring me drinks and rub me down and act as eye candy. ๐Ÿ˜€ I wonder if my husband would quit his day job… nah, I want new blood! Ha ha ha! Okay, I’ve lost my mind! I do need someone to rub lotion on me and make certain I take my medicine. That’s what I need.

All right. I need to go look up some braces on the net. My knees and elbows have revolted enough.

Be good. ๐Ÿ˜Š