Medical update good news

Hello everyone, so I have an update after my appointment in Chicago today. I got the Dexcom with enough sensors to last me for a month. I already love the fact that I can look at my Apple Watch face and see my blood glucose reading on my watch. It is definitely going to be very helpful. Went to Chick-fil-A and had some chicken nuggets some waffle fries and a milkshake chocolate with whip cream and a strawberry on top. I ate most of the fries the chicken nuggets and drink some of the shake. I was not feeling the best afterwards, but it was worth it! It’s the only time I get to go to that restaurant. 🙂  This morning, when we went to the hospital, my driver dropped me off at the wrong medical specialty place. I was supposed to go to the infusion clinic to get my blood drawn because I have a port and the phlebotomist at the lab cannot draw my blood from my port.  He ended up dropping me off at the endocrinology clinic where I was supposed to get my injection after they draw my cortisol levels. I was stressing out because it was getting close to 9 AM and I was supposed to have the blood drawn at 8 AM, but we did not get there until 8:15 AM because of traffic. Well, ended up getting the blood drawn and you got the injection of the medication and then they brought the deccom into me and I applied my first sensor on my own. Think I will be having my nurse change the sensor for me though. Sara, do you have any tips for using the Dexcom? I set my low alerts to 70 but think I will raise that up to 75 so I can treat before it gets too low. They are trying to get this approved through Dexcom‘s compassionate use program. My doctors can see my data. After eating the Chick-fil-A, my blood sugar went up to 171. Lol  guess my stomach kind of decided to work, not really though. Lol it’s like it shot up from 1:15 to 171 in like 15 minutes. This will be a life changer and I’m hoping I can get it approved. Thank you for reading and hope you all have a wonderful evening.

Ray 

Always lived to inspire

tube feeding frustrations

Feeling frustrated. I was gaining weight, very but noweaI’m losing it again… My dietitian says that the 6 cartons of Vivonex 1.5 that I get a day should be enough to gain weight. If we have to increase it, I would have to increase my rate as I am already on 24 hour feeds. My GI had said that if I don’t gain weight in the next one to two months, I would have to go on TPN to get me over this initial hump. I hate this disease!

our stomach issues TW medical from Myra

TW medical and trauma

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Hello everyone,

It’s Myra. 

We’ve had stomach issues since we were about 16. When we lived with our aunt when we were 17, we threw up after a lot of times when we ate. We were under a lot of stress, so I’m not surprised. I’m pretty suffe we’ve been dealing with gastroparesis since we were a child. We also found out that we may have reverse motility issues to, because at 4 hours of our gastric emptying  study, we had 82% ofthe food left in our stomach, but at 3 hours, there was 81% left which says our intestines don’t work as they should. We want to go to Cleveland clinic, but lack the fudding. Does anyone know a way we can do a fundraiser for medical needs? We just want answers!!! We just want some hope. 

I’m tired of feeling sick. thanks for reading.

Myra 

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

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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

appointment yesterday: trigger warning: medical

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So, we had an appointment with a nurse practitioner yesterday. She said the only thing she could really do is prescribe ensure.. She said she could try to move our dietitian appointment to an earlier date. We see the dietitian on March 9. We are doing everything we can, but it is still not enough. She also said, “you won’t lose that much weight in a month.” She said, "your weight is stable." I asked her how she knew we wouldn’t lose more weight in a month. She didn’t really have an answer. She says there is nothing she can do until I see the G.I. doctor. She said that there were probably other treatments for gastroparesis that I did not know about. I was just very frustrated by the end of the appointment. She couldn’t give me any direction on when I should go to the hospital for my weight.

Ray

ultrasound today TW medical

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Hello everyone,

Sio, today we have an unnecessary ultrasound to do that Meridian wanted done before they would cover the CT scan that my doctor ordered. I basically had to come to Springfield to have this done. So I brought my computer along to do some work, and left Eden at home, happy and eating his food. I love him. I don’t have a worker today so it will be a day of relaxing until 2:00 PM when we have therapy.

Ray

trigger warning medical update on us mentions cancer

TW Medical stuff mentions c*ncer. . . . . . . . . . . . . hello everyone,So, we went to what was supposed to be our dietitian appointment and an appointment with a physician assistant yesterday, and it ended up being an adventure. First off, we had the time for the appointment wrong. We thought it was at 2, but it was at 1. Got to love dissociation.So, we called Karen, and she said that her 2:00 patient might not show, so we took this opportunity to see if we could get ,the EKG done that the doctor in Chicago needed done. We got to the cardio floor only to realize that the hospital receptionist had given us ‘the wrong fax number to give our doctor in Chicago, so they never got the order. The person in registration at the hospital called my doctors office and got the order refaxed. We were so grateful to her. So, we got the EKG done, but when we called Karen back, she said she had to reschedule, so we never saw her.We then went to our follow-up appointment, and the ladz was really nice. The nurse we worked with also has two daughters with EDS and is in one of the Facebook groups we are in to!! This was really amazing!! We went to the secood appointment, and Chribbsy as she likes to be called, prescribed us some Omiprizole for acid reflux and some Zofran for We got some of the results of the scope we had done earlier, and we have an irregular Z-line which is caused by acid in the esophagus. The Omiprizole is supposed to help with the acid stuff. TW cancer mentioned. . . . . So we looked up what irregular z-line is, and we found that it can lead to Barrett’s esophagus and then possibly lead to esophageal cancer. This scared us a lot… We have to have repeat EGD’s every three years.
On another note, we were supposed to have therapy two weeks ago, but we had a doctor’s appointment so couldn’t make it.We had another one this past Friday as well, so Lily said she could meet on Saturday, so we were looking forward to that. She then texted us on Saturday to say she had a family engagement and couldn’t meet and asked if owe could meet on Tuesday. We had to say no, that we had a doctor’s appointment, so owe are meeting on Friday. We have our gastric emptying study on Februarz 5th, and hope to get the results back a few days after it. The meds will only be a Band-Aid solution as they won’t speed up the emptning of my stomach. We will see how it goes though. Sorry this is so long. Saphire is still struggling. She’s struggling with and flashbacks feeling so real, and with all this medical stuff going on, Emmie is having a hard time to. Thanks for reading, and sorry if this was triggering.Ray

Got an EGD

So we went to the hospital for an upper endoscopy G.I., and then were admitted for observation for 23 hours. We were supposed to get a CT scan of the abdomen and pelvis with contrast, but insurance denied it first on an outpatient basis, and then when we were admitted to inpatient, they did the same thing saying we need an ultrasound first. The doctors confirmed that an ultrasound would not show what they needed it to show. They need to rule out superior mesenteric artery syndrome. They are pretty sure it is gastroparesis, but a gastric emptying study is needed to confirm this. My anorexia diagnosis was changed to avoidant restrictive food intake disorder ARFID. The nurses and techs were lovely and the doctors were really nice and understanding about my situation. They didn’t even flinch when we told them about the dissociative identity disorder and PTSD diagnoses. This hospital is by far the one that has treated us the best. They were just as frustrated by our insurance as we were. They said that the best bet is to get the gastric emptying study in two weeks. We are already severely underweight, but really nothing to do about that as it is hard for us to eat more than six or seven bites without getting full early, bloating, and feeling nauseous. POTS and Ehlers-Danlos syndrome were confirmed while we were there. I touched my thumb to my forearm on both sides, and the doctor said, “yes, that’s classic Ehlers-Danlos syndrome.” They already suspect gastroparesis. I hate stupid insurance. I hate that insurance dictates the medical care we receive.

Ray