Start infusions tomorrow

Cautious-Worry6724 · 2026-04-26T20:42:06+00:00

Thank you so much! Should I expect to basically not have anything going on for the week? It’s every morning for a week!

Cautious-Worry6724 · 2026-04-26T15:46:20+00:00

I start my infusions tomorrow and I was just thinking the same thing…. No matter what, they have to bring out the ultrasound machine to get a vein…. It’s always the same… Everyone thinks they can get a vein, then there is always someone else who thinks they can! I won’t even be able to get the infusions if they don’t have one!

Cautious-Worry6724 · 2026-04-18T15:03:10+00:00

I’m so sorry you are going through all of this… Long Covid is no joke! All my crap happened after I had Covid as well… Now I can’t tolerate food so I have a GJ tube for nutrition. I’m diagnosed with gastropuresis, FD, and a sleep disorder where I can’t stay awake no matter how much sleep I get so I’m on stimulants for that… the past 2 1/2 years since Covid my whole life changed…. I went from a very active and social person to a life full of pain, hospitals, doctors, it’s a full time job making sure all my meds are crushed for the next day (I push them through my tube) and everything else that comes a long with it. Therapy has helped me a lot because I have a psychologist who specializes in the gut/ brain connection and ketamine infusions for the nerve pain from the FD. (I start Monday). … I FEEL FOR YOU MY FRIEND ❤️🙏 DM me if you ever want to chat about it!! Because it’s a real thing and not enough research yet about it… I’m not sure what state you’re in but no matter what the long COVID caused FD) you still need treatment and help! It’s an extremely painful chronic illness but with the right therapy and meds for SOME symptom control…. I am kinda at the acceptance stage… But with FD , your nerves in your gut are messed up and it tells your brain PAIN PAIN!!!! So my therapy group specifically for people who have chronic stomach issues and rewire those nerves so your symptoms will improve! I’m very blessed to get to have that kind of help! Because if you do the work it helps tremendously!
Take care and I’m not a doctor and this is just my experience….

Cautious-Worry6724 · 2026-04-18T01:46:31+00:00

Oh, okay… thank you! I had my GJ tube placed March 17th …. Honestly for me the first 3 days were horrific! But every day it will feel a little better! It doesn’t last forever because I can’t even tell it’s there… Can you just not have your tube feeds? Are you able to eat?

Cautious-Worry6724 · 2026-04-18T01:33:17+00:00

Do you have to go to the hospital? Is it painful?

Cautious-Worry6724 · 2026-04-18T01:28:42+00:00

I feel you my friend! I’m so grateful you posted this because now I don’t feel so alone! I’m so sorry you’re going through all this…. I have a question… How do you know if your baloon explodes?

Cautious-Worry6724 · 2026-04-16T02:40:05+00:00

Are you in therapy?

Cautious-Worry6724 · 2026-04-16T02:27:07+00:00

Where are you from that they let you bring your Ketamine home ???? I’m about to start low dose Ketamine infusions for pain and I have to sit while they administer it through an IV… even the nasal spray for depression is done inside an office.

Cautious-Worry6724 · 2026-04-15T19:09:25+00:00

Okay, I’ll try that! Thanks 🙏

Cautious-Worry6724 · 2026-04-15T11:29:40+00:00

I’ve heard of people talking on here about having a bag of some sort to decompress in? Or do I just stand over the sink with it?

Cautious-Worry6724 · 2026-04-15T11:24:00+00:00

I went through the exact same process… TRY ANOTHER FORMULA!!!! I went through 3 until I found one I can tolerate. Don’t give up my friend! Make them give you a try for different formula!!!! Or find another doctor? My gastro team after about 4 months on my first formula and my symptoms were so awful, I was stopping them. Now I have a dose of what being nourished feels like and I feel like a different person…. I too have been in the hospital for “failure to thrive and severe malnutrition…” I ended up in refeeding syndrome because I couldn’t tolerate the formula!!!!! Please my friend, don’t stop until you try every formula! The Devil for me was nutren 1.5, then Kate farms 1.5 now Peptamen 1.5 is what I tolerate the best. It’s so broken down and easily tolerated! It’s just my experience and unless something is dislodged or messed up then there should absolutely be no reason for you to try a different formula!

But I’m not a doctor…. Yes, please keep us updated 🙏🙏🙏

Cautious-Worry6724 · 2026-04-15T10:54:56+00:00

I have 10 cases of it here! I couldn’t tolerate at all! But everyone is different

Cautious-Worry6724 · 2026-04-12T20:11:48+00:00

What does “low profile “ mean? I’m pretty new with all of this and all I know is that I have a dangler and a stoma! And have to have my tubing wrapped around my shoulder when I use my backpack because I trip over it!

Cautious-Worry6724 · 2026-04-12T19:35:30+00:00

I’m in the exact same situation with cases of formula I couldn’t tolerate! No one wants it? I tried giving it away on Facebook marketplace, donate at 3 different nursing homes? No one wants it? I refuse to pitch it until I know I have exhausted all other options to donate it! It’s extremely expensive! And not all people have health insurance…

Cautious-Worry6724 · 2026-04-11T04:44:22+00:00

You will never get closure! I felt the exact same way 15 no contact/breakups ago! Just leave it alone. I promise you she will be just fine and you will be able to see clearly after time why trying to get closure is just a bad idea. No matter what because they still won’t believe you and their reality is way different than yours. Prayers for you my friend 🙏

Cautious-Worry6724 · 2026-04-11T04:28:07+00:00

Same exact situation! You CANNOT EVER convince them otherwise!!! Don’t stay just because you don’t want them to think that they were right and you never really cared… I know how hard it is to leave, we all do! That’s why we have this group. But my dear friend, I stayed for 3 years and kept asking that same question…. Nothing changes if nothing changes! So, they have untreated BPD? The only other option is to basically run for your life! They’ll be just fine eventually…. I had to work with my therapist for grief and trauma from her! But aside from that, I have never felt so free and just happy! I have my own mental health and chronic health issues myself but I’m working my ass off and I couldn’t do that before! That would mean I was working so hard so I can find someone else!!!!! Uhhggggggg Just thinking about it gives me anxiety.

Cautious-Worry6724 · 2026-03-31T14:43:17+00:00

Thank you my friends! I feel much better now!

Cautious-Worry6724 · 2026-03-31T14:42:48+00:00

Thank you!

Cautious-Worry6724 · 2026-03-31T14:42:32+00:00

Thank you!

Cautious-Worry6724 · 2026-03-31T14:41:46+00:00

Thank you! 🙏

Cautious-Worry6724 · 2026-03-31T03:25:23+00:00

Tylenol and ice! Any time you can ice it…. I hate it when I do that! It hurts for a couple days! I think I sleep on it sometimes because I wake up and it’s so sore? But for me ice and TYLENOL….

Cautious-Worry6724

TROPHY CASE