awkward

I’m at home, and I feel very awkward. Yesterday, the conversation was all about the restraunts people went to and how good the food was. I stayed out of the conversation. Then, they had my favorite meal from before I had my tube. It was lasagna with garlic bread. I just lay on the couch and pretended to be asleep. It was so hard. Just the smell alone was just…. But then, I thought of how sick the meal would make me, and yeah…. I’m fine when it’s one or two people eating in front of me, but when it’s a group, it’s overwhelmming… I also had to ask my little brother for help with pouring my formula into my bag, and I felt guilty doing it, because I thought I should be able to do this by myself!! I kinda felt like a failure… Then, my family told me my formula looked and smelled like baby formula and it looked and smelled disgusting. And I told them, well, it’s keeping me alive and left it at that.

Raych;

food the thing “i miss

You don’t realize how much food is a part of your life until you can no longer have it. I am thankful for my feeding tube, but I do miss food a lot! You would never know by looking at me that I have gastroparesis. I just want food!!

Ray

Thankful for my feeding tube

I am thankful for my feeding tube. It gives me nutrition. It gives me life. Without it, I would probably die. Chronic illness is a monster, but that tube gives me power. It gives me the power to live the best life I can live. It gives me the freedom to go where I want to go and do what I want to do. Gastroparesis will not defeat me. Maybe in the next 5 to 10 years, they will come out with a treatment that is covered by state insurances and is FDA approved, but until then, I am grateful for this tube. Yes, it may be uncomfortable. Yes, it may look weird to other people, but it’s my lifeline. Did I want this tube at 27 or at all? No, I didn’t, but I needed it to sustain my life. My stomach is almost completely paralyzed, but with this tube, I can live. Have a good day everyone. Thanks for reading.

Ray

explaining to littles

How do I explain to my littles about chronic illness? How do I explain that it won’t ever go away or that we will always be in pain? How do I explain that I can’t make their pain go away? I’m just at a loss? And how will I explain when we have to get a feeding tube?

Ray

I hate gastroparesis

Hello everyone,

I hate gastroparesis. It’s a monster of a disease. It steals quality-of-life, and so much more. I just want to be able to eat normally.. that’s all i want. this is a chronic condition, and will never go away. Does anyone have any encouragement? I will be getting a feeding tube soon. I can’t imagine being hooked up to tubing, and not having accessible feeding pumps. This will be an adjustment.

Ray

appeal letter from HFS

So I got a letter in the mail from HFS saying I had an appeal on March 3rd at 10 AM and if I didn’t answer the phone, the appeal would be dismissed. Megan doesn’t know why we got this letter as the appeal they filed was with Morgan County, not with HFS. I swear if HFS screws this up, I could scream. I think I’ve found a place that will accept me even if we have to get a feeding tube. It’s called the Emily Program in Minnesota. They were very understanding about the gastroparesis. They have to talk to their clinical team to see if they can accommodate me. I really hope they can. So I’m talking with Megan today at 2, and hope we can get things figured out, because I’m thoroughly confused!!!

Ray