Help wanted (Score so far related)

[msnobody]

Yes, doing okay. On the most tolerable medicine so far and at a low dose.

Is it helping? I hope things are going well.

Yes, thankfully, it is having the desired effect.

[Jersey Girl]

Almost 3:30 a.m. currently obsessing over food. Just made a grocery order and tried to come up with something that at least seems like a "normal" lunch or dinner. A couple of similar combinations because you know, chicken is my middle name.

Grilled Chicken (plain)
broccoli
tomatoes
iceberg lettuce
grated Parmesan cheese

Grilled Chicken (plain)
broccoli
tomatoes
pasta
grated Parmesan cheese

Possibly olive oil on both.

Fritos original corn chips are Low Fodmap. Ordered some of those, too. I could even crush some and sprinkle it on the salad.

Do I sound desperate?

Steel cut oats are about to make a comeback. Going to put a bit in the rolled oats, then increase the amount. Steel cut has higher protein and fiber than rolled. That's why I ate them to start with.

Gut is still functioning. Still have symptoms at night. Weight is stupid.

[drumdude]

I hope you find some relief from the symptoms soon Jersey!

[Jersey Girl]

I hope you find some relief from the symptoms soon Jersey!

Thanks! I often feel like my comments here are so redundant (This works! Now, it doesn't. I'm doing so well! I'm back in symptom hell again.) but as I said previously, it's turned into a journal where I can document for appointments and it helps me to just write out out. Trust me, there are TONS of folks out there agonizing over every bit of food they eat because this condition isn't uncomfortable, it bloody well HURTS, and what food works for one triggers another. It ends up depriving you of so many parts of normal life. Even foods that work can end up triggering symptoms. TONS of reddit forums devoted to SIBO and IBS issues. It's mind boggling to think how many people are "out there" suffering from similar issues as myself.

This leads me to believe that gastro issues aren't well understood by the medical community so patients are left to self treat...just like me.

This is what I figure. Once the balance of your gut microbiome is messed up, it's a total hit and miss, uphill climb to try to get it back in balance again.

Also, it's costly. I just came here to document out of pocket expenses to "treat" this on the post with my weight checks.

[Jersey Girl]

Gather round children...if you are still here. It's story time.

I'll try to make this as entertaining as I possibly can because the reality was nuts, weird and confusing. I'll try to make pictures because maybe that'll help. Let's call this story...

Welcome to the "S" Show

So late last night my gut was bloating up. That's when it usually happens. I do all the things I know to do, water, simethicone, abdominal massage, walk around, whatever. Then I'm sitting in bed reading online. Then slump over to the left side a bit because I'm getting tired and...

Afib/rvr kicks off.

That's approx. 3 days shy of 5 months episode free. I do all the things. I confess right here and now that I started swearing up to and including F bombs. I was angry, frustrated, disappointed because...almost 5 months with no issues and now...THIS. I keep doing all the things...valsalva maneuver, drink water, walk around, even take 1 pepcid which I haven't had in approx. 2 months, simethicone, and top it all off with the Walmart version of 1 Tums antacid tablet.

No go.

About 1:30 a.m. I get dressed in a new pair of pajama joggers, etc. I care what I'm wearing but at the same time I don't care. It's to flippin' late for me to care though I did wear matching "clothes". Gather up my phone, make sure I have ID, fix my hair, throw moisturizer on my face go to tell the Boy...

who wanted to DIE on the spot.

Join my club, boyfriend. The cat starts up meowing. He knows something is up but neither of us bothered to tell him that we were going to "the store" so he's meowing the whole time. I'm like "Stewart I don't have time for this so shut up. Mommy is sick, Daddy is sick. No one wants to to talk. Just get in your bed and hang in there with it."

Then the Boy pulls himself together, puts on his walking boot, grabs whatever he takes, and out the door we go with him using a walker with a cane on the side. We're both a grumbling mess so...I taunt him a bit... "Guess what? I get propofol and you don't!"

"S" Show is now officially in progress.

He's driving with his left foot. Why? Because he can. Jersey Boy, old school, enough said. Freezing temps, snow on the ground but one good thing: at least it's not a blizzard.

ER is about 10-15 minutes from the house. About half way there I start rifling through my stuff in the dark. He's like what are you looking for? My phone. Why? Because I think I'm back in NSR.

WUT.

That has never happened before. If I decide it's the ER then I'm going for a reason--cardioversion--because I've tried every trick in the book to self cardiovert at home. We're now in uncharted waters. Phone app won't work in the car. I put my hand where I can best feel my heart in the middle (solar plexus region ?)...it's not flipping out. Huh?

Best to continue on so they can run an EKG. Keep going. I'm asking God for safe travel and to forgive me for being human re: language but if he can't forgive that could we please justhave save travel to and from? I did swear a couple more times in the car. See? I can't stop. I'm stressed, confused, angry, all the things. I cuss.

Walk into the ER, go through security, and to the desk. Tell my story. They put me back to intake. The Boy made it in with the walker because I can hear the front desk asking him to come forward to check in. "It's not me, it's my wife, the little lady that just checked in." K fine.

Weight 85lbs (go me!), BP (off the charts), insert IV port (just in case), draw blood, run the EKG. And...

except for a few random blips...it's normal sinus rhthym.

If you ever had Afib/rvr you know immediately when you're in it and you know immediately when you are not. But when it's never happened to you like this it's confusing. What if I go back in? What if I go back home and it starts up again? Because with the heart shock it NEVER goes back out of rhythm.

But I didn't get shocked. And...I didn't get PROPOFOL which I was SO looking forward to! The past several months, I LONGED for propofol. Just put me OUT. Shut me OFF for a bit, okay? Nope. Not this time. I was hoping to go unconscious for even just a few minutes but okay, fine.

They put me back in a room but it's not the resuscitation room. I'm waiting there. Start walking around doing abdominal massage because I'm still bloating. The bloating never stopped. I almost went into the restroom to sneak a simethicone because that would help but since I didn't know what was going to happen I didn't. I never saw a view of the ambulance entrance and the resusciation room before because if I go in with transport, I'm in the midst of "stuff" so I don't notice what's around me.

I walk. I massage. I walk. I massage. I wait...no one comes. So...I toddle off to the check out desk just to be seen. A nurse from intake walks towards me..."How are you feeling?" "I'm okay but I don't know where my person is." My person is with another patient but the doctor is on the way.

ER doc shows up. No cardioversion needed. (No propofol for me.) He's not sure what happened. Sodium is low as always. I tell him I drink tons of water. He tells me not to drink so much water because it lowers sodium and in the next breath he tells me...maybe take Miralax now and then to just keep things moving along because it draws WATER into the colon. I wasn't in the mood to debate the fact that I drink water to stay hydrated and keep things you know, moving along, so I didn't say a word. Also advised that I might take Metamucil to increase fiber. Uh, doc? That's why I added food with fiber back into my diet. To increase fiber and increase nutrition so I could, you know, maybe gain weight.

I can't even.

I told him what triggers afib/rvr. Vagally mediated afib, the whole nine yards as briefly as I could. "Maybe your cardiologist could give you something to suppress that." Sure they could. But it's not going to fix my gut. the afib/rvr is a SYMPTOM of gut issues not the stand alone issue and it's not electrical it's physical. Gut bloats up or whatever, presses against the heart, heart starts sending alarms to the vagus nerve, the vagus nerve can't make any more room for the heart to beat normally and THAT'S how I get afib/rvr.

No medication will help for long. No abalation is going to help because first of all it's not electrical, it's physical, and even with ablation your heart regrows those sinus nodes and remodels itself so you are back in arrthymia business all over again. From all I have read and heard about, approx. 3-4 ablations and they put you on a pacemaker. I don't need a pacemaker. I need my gut to function in healthy normal ways. Okay enough!

The man was out of his depth with me. I feel like everyone is out of the depth with me. One of the reasons is that docs these days tend to have their specialties and one specialty doesn't seem to understand how the other speciality interacts with theirs. That's my theory. The gut folks don't understand the vagus nerve. The heart folks don't understand how the gut interacts with the vagus nerve.

I ask you, did they all not take anatomy physiology class? I'm here to tell you that they most certainly DID but since I've not taken it myself I don't know how far in depth it goes.

It's okay. I'm okay. I'm used to hearing docs spitball their way through an appointment or ER run. I guess they do the best they can with what they are given.

We go back home. Safely. Stewart was fast asleep in his heated bed. I down another simethicone, drink more water, put a heat pack on my belly for a bit, and then go to blessed sleep!

End of Story.

(I lied. There's apparently no end to the story. How I wish there were! I want the end of the story where I put on 10 pounds, gut works fine, eat whatever the heck I want, travel again, and stay out of doctor's offices!)

[msnobody]

Thankful you got back in sinus rhythm. I’m still picturing the walker with cane attached.

[Jersey Girl]

Thankful you got back in sinus rhythm. I’m still picturing the walker with cane attached.

Thank you so much, Weaps!

Oh so the walker. He's got the cane rigged up with a loop of duct tape. Duct tape fixes everything. I put a clear "basket" thing on the front bar with zip ties so he can carry stuff around (I can't believe I'm actually disclosing this it's embarassing but what isn't here lately.) like his phone or tablet. On the other side there's a cloth shopping bag with lemons on it because he goes on short shopping trips. And there's another container thing lashed on with zip ties (I think? Maybe duct tape.) so he can use it like a little personal trash can or fit a cup in there. Believe it or not, with all that on it he can still collapse it to take in the car.

I'm sure there's accessories that we never bothered to search online for so we made do with what we had.

WHO are we?

I have NO idea how I went back into NSR. It'd been a while since I did the valsalva maneuver...I think? I dunno. I don't really know when the last attempt was before we left. All I know is that it did and I knew it instantly...because you know it. It doesn't slow down, it just kicks back into NSR. You can't miss it.

I feel SO stupid. I'm getting used to it.

I gave myself grace today and worked on a new paper craft project I've been wanting to try. Did get some house things done and took out the trash. Offered to pull out the neighbor's trash because her hubs who was helping us, had surgery. But mainly just made it a self care day and skipped my daily weight checks I'm documenting here, too. I just needed to step away from it all.

[Jersey Girl]

Oh my gosh. There's ALL kinds of stuff on Amazon. This one is 14 bucks.

https://www.amazon.com/Upgrade-Foldable ... 7658&psc=1

There's even cup holders and trays so you can carry your food and dishes around.

[Jersey Girl]

Before I got ready to go to sleep, I started reflecting on this whole thing. I think I may have an answer. If I'm right, it means I unintentionally did this to myself. Just went back to the beginning of the thread and took a look at where I started and where I am today.

I would say that symptoms began in June-ish 2023. By the time I started the thread in Aug 2023, I can see where the viscious cycle was present and if I am right...it's only gotten worse. In one of my first posts I admit that I was afraid of eating and I also presented with symptoms. Don't ask me what they are right now but I recall early on, Cam asking me if I was taking any meds or gutting it out. I was gutting it out. I was already feeling sickly. In Sept 2023 (going from memory) I had a day when I suddenly didn't feel sickly. Not looking back right now. I clearly remember feeling like I was poisoned and then that day it "lifted".

Fast forward to today. I don't eat enough calories. I've said repeatedly that my enemies are sugar, fat, and an empty stomach and I know I recognized this throughout the latter parts of the thread. An empty stomach makes your gut produce more acid which would, in turn, increase irritation to the gut lining--gastritis diagnosed in Jan 2024.

It's now Jan 2025 and what I'm point to is that I've been undereating more and more this whole entire time. Which can lead to imbalance in the gut microbiome...and result in SIBO. So now I suspect chronic undereating is the culprit.

There's only one way to find out. Drop more food bombs into my gut and see what happens. Start out with a small increase, just do it.

What's the worst that can happen? My gut bloats? It already does. I go into afib/rvr? So I get propofol and a heart shock. Who cares?

Cost v. benefit tells me to do it.

What's the best that can happen? My belly gets full, the exposure to acid lowers, nutrition increases, the probys and the FD guard help the good bacteria to win the war...I may have inadvertently caused myself.

Tomorrow I'm making a strong effort to go in for fasting blood labs. I need that information for the gastro doc and to get my RX's back on their regular 90-day track. If I have to wait until Friday, I'll still have the data for the upcoming appointment.

Regardless, go with the plan tomorrow in earnest.

I won't do anything incredibly stupid. I've got 5 days before the gastro doc to test the theory. Be reasonable about it and just do it. Keeping in mind that my gut is still prone to irritation so don't throw stupid stuff down the hatch.

In closing, I'm also convinced that I'm incredibly stupid but whatever started this with me (Stress? I did have significant amounts of stress for months before I started with symptoms) doesn't matter any more. What matters is how it took hold of me, how it's affected my mental and physical health, and that it has developed to a point of chronically undereating and that's what I need to work on...NOW. I've been trying to increase calories but it's easy to fall behind. Like a trip to the ER last night that can throw me off course.

Some things are better. The anxiety has been gone a long time. Energy levels are normal. Gut is working. There's gotta be some healing going on so best to strike while the iron is hot.

God please help the Jersey Girl. Help me to remember who I belong to and what you have given me. Strengthen my faith and trust in you.

For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind. 2 Timothy 1:7

[msnobody]

Thankful you got back in sinus rhythm. I’m still picturing the walker with cane attached.

Thank you so much, Weaps!

Oh so the walker. He's got the cane rigged up with a loop of duct tape. Duct tape fixes everything. I put a clear "basket" thing on the front bar with zip ties so he can carry stuff around (I can't believe I'm actually disclosing this it's embarassing but what isn't here lately.) like his phone or tablet. On the other side there's a cloth shopping bag with lemons on it because he goes on short shopping trips. And there's another container thing lashed on with zip ties (I think? Maybe duct tape.) so he can use it like a little personal trash can or fit a cup in there. Believe it or not, with all that on it he can still collapse it to take in the car.

I'm sure there's accessories that we never bothered to search online for so we made do with what we had.

WHO are we?

I have NO idea how I went back into NSR. It'd been a while since I did the valsalva maneuver...I think? I dunno. I don't really know when the last attempt was before we left. All I know is that it did and I knew it instantly...because you know it. It doesn't slow down, it just kicks back into NSR. You can't miss it.

I feel SO stupid. I'm getting used to it.

I gave myself grace today and worked on a new paper craft project I've been wanting to try. Did get some house things done and took out the trash. Offered to pull out the neighbor's trash because her hubs who was helping us, had surgery. But mainly just made it a self care day and skipped my daily weight checks I'm documenting here, too. I just needed to step away from it all.

Just don’t do like a patient my fellow nurse coworker had. He had a urinary catheter with a regular size collection bag. He decided to self-convert it to a leg bag (smaller in size), so he put about 100 staples in the bag. Can I get a UTI

I’m always amazed at the creativity of patients, especially the men. CPAP masks are another one. All kinds of duct tape, etc., and cess pool humidifier chambers. << Just get new supplies every 6 months.

If you buy out of pocket, those accessories can be expensive for the cheap materials that they are made of.

Praying you will have a refreshing break from these issues.