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

frustrated as hell!!! TW medical

TW medical

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So, my GI doctor’s office just called me and told me that the doctors weren’t making their calls to patients until the 27th of March!!! I just want answers!!! And now I have to wait another week!!! Another fucking week!!!! Ugh!!!! Sorry if I sound like a whiny baby.

Ray

homemaker

So, we have no homemaker for two weeks!!! The company just called my worker like half an hour ago to tell her to clock out because someone who had gone to some one else’s house had been exposed to the Corona virus. So, now , those workers have to apply for unemployment or something, and we are without workers for two weeks. Not sure what we are going to do now. Ugh!!

Ray

from Emmie TW exhaustion

TW fatigue and stuff

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I know we need to do work for our course, but we are just so so exhausted. I just wanna sleep and sleep. Don’t want to be tired. just don’t wanna do work today.

Emmie

scared TW medical and trauma and death

TW trauma and medical and deatht
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Please read carefully, from a concerned Ray and system,
We are freaking out about the Corona Virus, and not only that, but we are worried about the state of us medically. We are 88 pounds now, and we can’t get enough fluids or calories. We emailed our POTS specialist yesterday, and he is going to send our PCP some recommendations for IV fluids as a standing order or even home IV infusions. Yesterday, our heart rate got up to 141, even after taking our heart rate medication, and our blood pressure was 80/50. We are damn scared. We don’t want to die!! Our dietitian isn’t going to our GI appointment with us after all. She didn’t see the point. She said it wouldn’t be feasible. We spoke to the social worker for our course and to our instructor, and they are verry supportive and understanding. They said they wouldn’t let our DVR counselor take us out of the class. If we didn’t have that course, we would drive ourselves crazy with to much time on our hands thinking about everyting going on right now for us. During the day, our heart rate goes into the low 40’s at times. It’s scary, but the local hospital won’t do anything. We just have to wait to see the GI doctor. And now that we might be needing a feeding tube, Meridian has agreed that they will pay for the out-of-state treatment that we have been trying to get them to pay for for the past 3 years, but here’s the problem with that now. If we get the feeding tube, no residential place, or even River Oaks for that matter, will accept us because they don’t have the medical oversight to manage a J-tube. So, we are so close, but yet so so far away. We don’t want to die!! This is medical neglect. This is bringing up a lot of trauma stuff for us as well. We are trying our hardest to just hang on and not be swept away by all our emotions. We know we need help, but the medical system is failing us, big time!! Not sure how much more of it we can take, both physically, or mentally. We have no backup crisis plan, because no one knows what to do, and no place will take us because we are to complex and considered a liability. We can’t do standard eating disorder treatment programs, because we have an almost completely paralyzed stomach, so we are just told to wait and see GI. We were given a list of foods to avoid and ones to try by our dietitian, but the list is in print, and she just said it’s about trial and error. We were only able to finish half of an 8 ounce shake in her office on Monday. She could tell we were struggling, and she said she didn’t see an eating disorder when she looked at us. She also saw the results of our gastric emptying study, and she said an eating disorder wouldn’t cause results that severe. Doctors don’t know enough about this condition, and there is not enough research being done on it. We are desperate for some kind of hope. 
We also found out that our worker that comes 4 days of the week can no longer work for us, so it’s back to not knowing who will come the next day except for Tuesdays. Ugh!!
Ray et al

dietitian today TW

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So we are going to see our dietitian this morning. We are just hoping she has some advice or anything really because we are down to 89 pounds. We are honestly scared… Don’t want them to force us back into eating disorder treatment as this is a physical medical issue. Eating disorders don’t cause gastroparesis this severe. Hoping for the best and some good news or advice. Hoping she doesn’t just say there is nothing she can do and we have to wait to see the GI doctor on the 20th.
Ray

TW ER and Medical

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So, we couldn’t see our primary care provider until April 2nd, and we suspected we had Thrush. We couldn’t use our local urgent care either as we had to be with that specific medical group with primary care and we are not. Plus, our insurance doesn’t cover that urgent care anyway, so we ended up going to the ER. I know, I know, thrush isn’t considered a life-threatening emergency, but we really didn’t have any other options. We also tried to ask about nutrition, figured it was worth a shot, but the doctor, though sympathetic to our story, couldn’t do anything. She was really nice and listend to us talk, and she had a good bedside manner. We got there at around 7 and waited for about 5 hours before being seen. Needless to say, our joints were screaming by the time we got a room. They apologized for the long wait and said that a lot of people had been coming in sick and that it had been that way for the past month.

I finally got out of there around midnight!! And I tried to call the cab company I usually use, and they didn’t answer at all. I called them 9 times!! And finally security called another company, and it turns out, they were even cheaper than the other one that I used. So it all worked out, and the doctor gave me a prescription liquid medication/mouthwash that I have to swish three times a day. So, all-in-all it was an interesting, but very very long day.

Ray

from Enigma TW suicide

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Why do we keep trying to get doctors to listen to us? Why do we have to be in so much pain? Why do we keep trying? Just why?

Why does the insurance have to determine when and where we go to treatment? Want to be a bird and fly high into the sky and just…. Disappear!!!!!

No matter how much we advocate, we are still not in control of when or where we go for treatment. It doesn’t matter that we have lawyers involved. That doesn’t even seem to matter. We are trying so damn hard.

Enigma

Rayette Rucker

World Services for the Blind

Assistive technology instructor online trainee

Google Voice Number: (314) 637-9985