Help wanted (Score so far related)

[Jersey Girl]

Wowsers. That's a big change. Do you know, wholegrain bread contains a lot of nickel and in a nickel free diet it's better to have white bread and white pasta.

No, I didn't know that but I fully believe you. Example, I knew I reacted to sugar alcohols but I had no idea how many products contained them. They're out. All the way out except for the Levo, more about that at the end of this post.

All new foods received and the garlic infused olive oil is coming tomorrow. Tried some Fritos today. Not good. I tend to think that the alcohol sugars I ingested recently and started getting dizzy again, did a number on the gut so I'm going to have to baby step my way back from that.

Message sent to Primary for the other type of Levo in capsule form without alcohol sugars. We'll just see how that goes. I think there are other types but she's going to have to do the detective work on that. I'm fresh out of steam chasing things down for right now.

I wonder if folks who read here think we're both nuts. Nope. Not nuts. And I don't wish this mess on anyone. Gut damaged, time lost, hardly go anywhere, pain every day to one degree or another, diet totally upended and I look like a stick.* What the heck.

When I developed these symptoms, I looked for fat, sugar/carbs content as triggers, and protein because I desperately need it. Now I'm going through all ingredients doing my best. There's no easy fix for this. How I wish there were!

I don't know how I haven't lost my mind. Mental health goes up and down. I try to keep my posts upbeat and positive but I'm faking it.

Hypocrite.

*I don't know if I mentioned this. I had to pick up a small order at Target one day. It was the day I picked up those lactase chewables with mannitol. I was wearing medium length shorts. As I was walking to the glass doors I saw my reflection and honestly, I don't even recognize my own legs now. It feels very cruel and sad to me. But I walk in and out smiling anyway.

[IWMP]

I don't think you look like a stick. I think maybe when you visualise what you think you should look like or what you used to look like you might feel a sense of contrast. But from what I have seen, I wouldn't say you are stick thin.

I think I come across as having medical anxiety. But at the same time when you spend years with difficulties and struggles and have people say it's anxiety and then one day you discover a condition that explains every single thing you struggle with and then you get checked and it turns out there's an answer it kind of validates you and your experience. I think when people spend time undermining or downplaying your feelings and struggles you can either shut down or you can push back and be like, you might not see it but to me it's real and valid. I've been on both sides. I have less anxiety now that I know that when I'm in a flare up or I'm having random allergy symptoms or whatever that there is an answer. And I think you have found an answer too but you are trying to navigate how to find the right solution now and to find that balance. I do think it will come in time.

I do hope you have lots of love around you and I think you are awesome. I know you are going to get through this. I hope you know it too. Each thing you discover is one step closer.

I hope the garlic oil is yummy and lets you have some more flavour. Fingers crossed for no reaction.

I'm having a lazy day. Stuck food in the slow cooker, chilli but with chicken mince. Watched crap on TV. Took the recycling out. But no major cleaning or decorating today. Definitely avoiding impulse jobs. Got about 40 minutes before I need to go get the kids.

[Jersey Girl]

I don't think you look like a stick. I think maybe when you visualise what you think you should look like or what you used to look like you might feel a sense of contrast. But from what I have seen, I wouldn't say you are stick thin.

You haven't seen what I'm talking about. It's not good.

I think I come across as having medical anxiety. But at the same time when you spend years with difficulties and struggles and have people say it's anxiety and then one day you discover a condition that explains every single thing you struggle with and then you get checked and it turns out there's an answer it kind of validates you and your experience. I think when people spend time undermining or downplaying your feelings and struggles you can either shut down or you can push back and be like, you might not see it but to me it's real and valid. I've been on both sides. I have less anxiety now that I know that when I'm in a flare up or I'm having random allergy symptoms or whatever that there is an answer. And I think you have found an answer too but you are trying to navigate how to find the right solution now and to find that balance. I do think it will come in time.

Well it's like you've said. People who haven't dealt with similar things don't understand and even if they did have something similar their experience would be unique to them. I do think I've found some answers and I don't think there is only one answer. I think it's involves a cluster of answers and solutions. I think you have more experience than I do. You know what a flare is and are less anxious on account of it. I'm happy to hear that!

I do hope you have lots of love around you and I think you are awesome. I know you are going to get through this. I hope you know it too. Each thing you discover is one step closer.

Thank you! I've read some reddit posts and I know I'm not alone with this. Read two comments there yesterday. One person said they are always walking around with their hand over their gut. I do the same thing without even thinking. Another described how they grieve for the life they had and the person they were before gut trouble happened. I can identify with all of it. I don't have a reddit account but I do drop in there from time to time on various threads when I've got an idea about something.

I hope the garlic oil is yummy and lets you have some more flavour. Fingers crossed for no reaction.

It came today! I'm planning to try it tomorrow (Thursday) on spring salad mix with tomatoes. Probably cheese or chicken for protein.

I'm having a lazy day. Stuck food in the slow cooker, chili but with chicken mince. Watched crap on TV. Took the recycling out. But no major cleaning or decorating today. Definitely avoiding impulse jobs. Got about 40 minutes before I need to go get the kids.

I think THAT'S exactly what you should be doing! Be kind to yourself. You are growing a whole human! You deserve to rest as needed and avoid diving into a project that will leave you knackered.

[Jersey Girl]

Insurance kicked back the RX on Tirosint even though my Primary stated it was medically necessary. They'll need a pre-authorization from her. I'll still take the regular Levo and if insurance won't pay, I'll pay out of pocket so I can trial it. I went through every inactive it has and no red flags. Levo is the last thing I use that contains sugar alcohols and I want it OUT.

Messaged her through the portal and explained. I know she'll do her best for me.

I guess I'm decluttering my gut now.

[IWMP]

Aww that's pants about the insurance company. Hopefully it isn't too expensive.

Fingers crossed something works out.

You'll have to let us know how the garlic oil works out. Sounds yummy.

[Jersey Girl]

Aww that's pants about the insurance company. Hopefully it isn't too expensive.

Fingers crossed something works out.

You'll have to let us know how the garlic oil works out. Sounds yummy.

Will let you know about the garlic oil for sure! Recently added fresh pineapple chunks. Always a slow process. I'll be after the garlic oil on salad shortly here!

How did the RSV shot go for you?

(Wonder if anyone who might be reading this thinks what are they talking about? They didn't mention that before. Um...there are conversations taking place well, all over the place. Not to worry, we're both masters at by now and have no trouble keeping track. It's a well practiced skill. )

[IWMP]

Aww that's pants about the insurance company. Hopefully it isn't too expensive.

Fingers crossed something works out.

You'll have to let us know how the garlic oil works out. Sounds yummy.

Will let you know about the garlic oil for sure! Recently added fresh pineapple chunks. Always a slow process. I'll be after the garlic oil on salad shortly here!

How did the RSV shot go for you?

(Wonder if anyone who might be reading this thinks what are they talking about? They didn't mention that before. Um...there are conversations taking place well, all over the place. Not to worry, we're both masters at by now and have no trouble keeping track. It's a well practiced skill. )

It wasn't as bad as I expected. I'm a bit more tired than usual and have had a headache but I'll take that. Don't know what to do with myself. There's not much housework to do. I'm not up to DIYing. I have thought to get some large canvases and paint my son some art for his room. Might do that in the coming weeks but not sure where I'd hide it if I were to do it as a surprise. If I do it in front of them, my little artist would want to take over or would want to do her own and she gets everything everywhere and I'd get overwhelmed. Might wait til the council collect our things and then I have more space (I've requested a large goods collection which they will do for free once a year, so I've asked them to pick up a bed, mattress, sofa and two chairs but that's in a week and a half). No idea how I'll get that sofa outside lol. Husband will help but don't think he would be able to do it alone.

[Jersey Girl]

Will let you know about the garlic oil for sure! Recently added fresh pineapple chunks. Always a slow process. I'll be after the garlic oil on salad shortly here!

How did the RSV shot go for you?

(Wonder if anyone who might be reading this thinks what are they talking about? They didn't mention that before. Um...there are conversations taking place well, all over the place. Not to worry, we're both masters at by now and have no trouble keeping track. It's a well practiced skill. )

I speak the truth.

It wasn't as bad as I expected. I'm a bit more tired than usual and have had a headache but I'll take that. Don't know what to do with myself. There's not much housework to do. I'm not up to DIYing.

Mama sit there and put your feet up. Close your eyes and listen to something...music, audiobook, or nothing at all. You're growing a whole entire human and now you've got the after effects of a vaxx. Give yourself a refresh and recovery day any time you need to.

I have thought to get some large canvases and paint my son some art for his room. Might do that in the coming weeks but not sure where I'd hide it if I were to do it as a surprise. If I do it in front of them, my little artist would want to take over or would want to do her own and she gets everything everywhere and I'd get overwhelmed.

If you have a garden with grass, she can do it out there. Done it eleventy billion times with children. Highly recommend it! Freedom and easy clean up! Give her a bucket of soapy water for her brushes or rollers. Let her do the whole job from paint to clean up. She can do it.

Might wait til the council collect our things and then I have more space (I've requested a large goods collection which they will do for free once a year, so I've asked them to pick up a bed, mattress, sofa and two chairs but that's in a week and a half). No idea how I'll get that sofa outside lol. Husband will help but don't think he would be able to do it alone.

That's so cool you can get those items picked up! Is that like a neighborhood clean up effort? It's for free, right? You are not moving a sofa. I forbid it! Get the children out there with hubs and let them pitch in. It'll give them a super shot of self esteem and couldn't we all use that from time to time? They've got a baby coming, too. It's a good time to elevate them.

Tomorrow (Sat) we have a new recliner coming from La Z Boy the same place where the couch and matching chair came from. This is for the Boy prior to his upcoming surgery on Oct 2. I got 50% off with free delivery, and it's a leather one too! Oh and they gave us presents...a checkered beige throw and two really nice coffee mugs. That was such a good day for me!

We're going to have to manuever some chairs around in another room, too, and then one of them has to "go". Not sure how we're gonna get it out of here but I think Buy Nothing is a good start. See if anyone wants the chair and if not, I have no idea what we're going to do. Maybe take it apart completely and put it out in the trash bin like we did with a sofa one time.

Have a good weekend over there! Let me hear from you if you have time...anywhere you want.

[Jersey Girl]

Remember when I told you to rest and put your feet up? Here. Take a page out of my playbook.

I had made a short list of things to do so I don't knock myself out too much. Organized 3 book cases. Two are small and one is an IKEA Expedit (now Kallax) 8 hole unit that holds my children's library. I pulled out all of my classroom laminated photos and other bagged up non-book things that I made over the years (not your average "flannel stories", I'll leave it at that. I made such good stuff!). Dusted shelves and lined up all the books so I made one "hole" for my computer paper basket. We have a Mac on the top with a printer and a tray of small live succulent plants. Felt so satisfying...right up until the point where I knocked over a top-heavy succulent and watched the soil and tiny white gravel bits fall to through the railing on the loft carpet and down the second part of the staircase. After all my hard work (hard now because I'm not really well) I made a terrible mess.

Know what? It's staying there, too.

It's nearly 11 pm here and I haven't touched any of it. I'm not going to touch it until I clean it all up tomorrow. If for any reason I don't get to it tomorrow it's staying right there until I do.

So rest, Mama, rest. Be kind to yourself and don't push anything. Let hubs and the children manhandle that sofa right out the door. They can do it. Let them!

[Jersey Girl]

Update: Neuropathy is gone. The last of it was in my toes. Gone!

My sister has been diagnosed with Afib. Not like mine but Afib all the same. She's going for further testing when she gets back home from taking care of our brother for two months (so his wife could keep working weekdays) who recently had quadruple by-pass surgery. I've only met him once as an adult. Our father and other brother (on our father's side) both died on or around age 55 from cardiac disease. Repeated heart attacks complicated by substance abuse. This brother had insurmountable blockages that could only be helped with surgery.

She and I were texting recently and I talked about how I never thought I would live to see 60 years old. None of us have ever believed we'd live past 60 on account of that paternal health history. I applied for Social Security at the very earliest age possible so I could at least spend some of my money before I died.

All of us girls are still standing longer than we ever imagined and our youngest only brother left who just did the hard thing for his health. What courage does that take? He has no memory of our father at all. Two weeks ago I packed up my father's motorcycle bracelet and sent it to him. I've had it all my life since I left home. I know it's where it is meant to be now and my brother loves having it! I'm so happy to know that!

p.s. I found out what her favorite color is: Purple. My favorite color to wear!