Hello everyone,
So, it’s been a while since we’ve done an update to this blog. We are currently in the hospital with a central line infection and a UTI. We came in last Sunday to the ER, and they told us we were fine, so we went home. I saw my bloodwork and all was not fine. Our white blood cells were crashing and the platelets were dropping too. They just sent us home with an oral antibiotic and said we had a UTI. We told them that the next time we came back we would be septic. We were right. We came back on Tuesday and we were in sepsis. We had blood cultures taken and they came back within 8 hours as positive for gram positive staff epidermatitis. So we were not only fighting a UTI but a bloodstream infection as well. We thought we were going to have to have a heart surgery because they thought there was a piece of vegetation on one of my heart valves, but luckily, there is not one there, but there is one stuck to the current central line, and we are going down today to get the line replaced. Not sure how they will remove the line with the bacteria stuck on the end. I know this has been a lot, but we want to thank you all for being here for us.
Hope all of my readers are well.
Ray
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
GI appointment update
Hello everyone,
So, I had my G.I. appointment on Wednesday, 19 May. We are keeping my feeding tube rate the same as the doctor said that with my bloating currently it would be impossible to increase my feed rate. We also discussed starting an antibiotic that would target the gases in the G.I. tract that causes bloating. The antibiotic stays in the G.I. tract and does not enter the bloodstream. My insurance also approved Motegrity. It is a medication that is supposed to help things move through my bowels. I hope this medication helps, and I hope my insurance approves the anabiotic that they want to start me on. Hope everyone has a good day and thanks for reading.
Ray
Feed intolerance update
I’m still struggling to tolerate my feeds. This is frustrating as I do not want to end up on TPN (total parenteral nutrition) gastroparesis is not a fun condition to live with. It literally translates to stomach paralysis. Chronic illness can sometimes be frustrating.
medical TW feeding tube formula issues and dissociation
TW medical and dissociation
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hi everyone,
we are struggling today. we are bloated because of our formula. we’ve been switching like crazy. Time loss and PTSAID is at an all-time-high. We are not dissociating when we are actually out as we started a new med called Neltrexone. It helps with chronic pain and staying more present when each of us is out. we have a chronic ear infection that we have aro be on eardrops for. Just stressed. Our dietitian isn’t listening to us either. She wants us to vent our G-tube three times a day. we don’t want to be on TPN…
Nicole 20
food on my mind ⠞⠙
Hi everyone, I’m really struggling today. I miss food so much today, but I’m dealing with bloating today because of my gastroparesis. I love food, but it doesn’t love me. I just hate this dicotomy… I just want to be normal.
Ray
Just another tool in my toolbox against gastroparesis
Hello everyone,
So, we got our permanent tube placed! Yay!!! It’s a GJ tube. Still healing from the proceedure. Gastroparesis sucks, but it won’t ruin me. I now have another tool in my toolbox to make my life easier to live. #tubieLife
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
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
Spoke to our primary care providers office yesterday trigger warning medical
Trigger warning medical not sure……So, yesterday, we called our primary care providers office and asked her for help. We asked if they could place an NJ tube, but she said that she could not do that. She had said we had to wait for the G.I. consult on March 20. She wants us to drink three protein shakes per day diluted with water to make them easier to swallow as well as eating three full-size meals per day. This is nearly impossible. We can barely manage some days to eat some applesauce and some chicken broth. Why can’t we just get help? I also found out why I haven’t been seeing my dietitian. My primary care provider never sent in a referral to her when I switched providers. So I have not seen her since January 7. I called her and asked her for her advice yesterday, and I asked her if she could prescribe a feeding tube, and she said if it was eating disorder related, maybe. She told me to also wait for the G.I. consult. I am just getting so frustrated at this point. I just need nutrition! Dammit!Ray
my multiple life 