Help wanted (Score so far related)

[IWMP]

Hey Jersey Girl, are you ok?

[Jersey Girl]

Hey Jersey Girl, are you ok?

Yes I am! I've been busy slowly trying to play catch up around here for things I couldn't do for so long! Which means I'm good...really good! I did have a couple of nights disturbed by symptoms but nothing nuclear. Other than that...really no symptoms during the day and pretty sure my gut is working like it's supposed to now. It still feels weird though...hard to describe. Like I can feel everything...like it's sensitive. But I do feel like I've reached another level of healing!

I've been eating like I've been starving for the past 1.5 years. Larger portions, cheater snacks...added a few more foods and more in the queue. Weight was still hovering in the same place last time I weighed. Now I'm staying away from the scale and just eating. Blessed eating.

WATCH...I'll end up in the ER tomorrow!

This is what I think at the moment. All this gut upset creates irritated lining, malabsorption, pain and LOTS of it. I'm thinking that maybe the probys kicked in good and proper, FDgard helps with irritation, also added more fiber from foods, so maybe...the compost pile is more balanced now and the lining is finally getting a good chance to heal?

I am not a doctor. But the doctor isn't me either. The above is how I would sort it out based on what I feel.

I wanted to add back complex carbohydrates. My WHEAT CRACKERS are back!!! So...now I can take a portable food when I go out. It's what I used to do before all of this happened. String cheese sticks (mozzarella--but I've got cheddar in the fridge), strawberries, wheat crackers and water. This is amazing...it gives me freedom I haven't had for so long! I even went on a 3 hour visit to family one day!

That's progress I wasn't sure I would ever see again.

Adding back foods (I'm sure I said this before) is a slow process. Like the string cheese...I started with half a stick one day. Then a whole one the next day...kept it there a few days and then increased to 2 sticks. Now I sometimes have a 3rd later in the day. Trying to get more protein as best I can.

Frito's are complex carbs! I'm eating them for cheater snacks like it's my job.

So...I've got 2 fruits, 2 veggies, cheese, the ever present chicken, oatmeal, wheat crackers, one good cheater snack, going low on the chips and pretzels--simple carbs--for now. And other foods in the fridge and pantry waiting for me.

I don't get scared like I used to when adding back a food. Maybe for a moment but I follow through. When I got those test results about the pancreas and other possible conditions, and they all came back normal I thought to myself..."There's my shot. That's my shot." and I started to become more proactive about nutrition because a scary weight lifted off me.

You asked in an earlier post if I ever get tired after I eat. YES! About once a week (after eating) I would feel like all the strength drained out of me. It's not like I ate a huge meal and I don't recall if it was the same foods. I think it has nothing to do with whatever food or how much. I think it has to do with healing and my tummy working again. I'd sit on my bed with a pillow behind me and basically pass out for an hour. That was happening for a long time. I don't think I've had that for about 2 weeks now.

But again. I am not a doctor and the doctor isn't me. He might have an explanation I know nothing about. Maybe you feel drained of energy because all your cells are healing while your gut is trying to process food? I think there's a lot going on in there!

I've never had to recover from a serious illness before. If I get tired, I make it my job to rest. That's all I know to do.

Is that what you do if you get tired after eating and how on earth do you manage it with children???

[Jersey Girl]

Which reminds me...I have GOT to post a few pics here of what the state of my holiday decorating was right up until about 2 weeks ago. You guys will just flip when you see it.

[IWMP]

Hey Jersey Girl, are you ok?

Yes I am! I've been busy slowly trying to play catch up around here for things I couldn't do for so long! Which means I'm good...really good! I did have a couple of nights disturbed by symptoms but nothing nuclear. Other than that...really no symptoms during the day and pretty sure my gut is working like it's supposed to now. It still feels weird though...hard to describe. Like I can feel everything...like it's sensitive. But I do feel like I've reached another level of healing!

I've been eating like I've been starving for the past 1.5 years. Larger portions, cheater snacks...added a few more foods and more in the queue. Weight was still hovering in the same place last time I weighed. Now I'm staying away from the scale and just eating. Blessed eating.

WATCH...I'll end up in the ER tomorrow!

This is what I think at the moment. All this gut upset creates irritated lining, malabsorption, pain and LOTS of it. I'm thinking that maybe the probys kicked in good and proper, FDgard helps with irritation, also added more fiber from foods, so maybe...the compost pile is more balanced now and the lining is finally getting a good chance to heal?

I am not a doctor. But the doctor isn't me either. The above is how I would sort it out based on what I feel.

I wanted to add back complex carbohydrates. My WHEAT CRACKERS are back!!! So...now I can take a portable food when I go out. It's what I used to do before all of this happened. String cheese sticks (mozzarella--but I've got cheddar in the fridge), strawberries, wheat crackers and water. This is amazing...it gives me freedom I haven't had for so long! I even went on a 3 hour visit to family one day!

That's progress I wasn't sure I would ever see again.

Adding back foods (I'm sure I said this before) is a slow process. Like the string cheese...I started with half a stick one day. Then a whole one the next day...kept it there a few days and then increased to 2 sticks. Now I sometimes have a 3rd later in the day. Trying to get more protein as best I can.

Frito's are complex carbs! I'm eating them for cheater snacks like it's my job.

So...I've got 2 fruits, 2 veggies, cheese, the ever present chicken, oatmeal, wheat crackers, one good cheater snack, going low on the chips and pretzels--simple carbs--for now. And other foods in the fridge and pantry waiting for me.

I don't get scared like I used to when adding back a food. Maybe for a moment but I follow through. When I got those test results about the pancreas and other possible conditions, and they all came back normal I thought to myself..."There's my shot. That's my shot." and I started to become more proactive about nutrition because a scary weight lifted off me.

You asked in an earlier post if I ever get tired after I eat. YES! About once a week (after eating) I would feel like all the strength drained out of me. It's not like I ate a huge meal and I don't recall if it was the same foods. I think it has nothing to do with whatever food or how much. I think it has to do with healing and my tummy working again. I'd sit on my bed with a pillow behind me and basically pass out for an hour. That was happening for a long time. I don't think I've had that for about 2 weeks now.

But again. I am not a doctor and the doctor isn't me. He might have an explanation I know nothing about. Maybe you feel drained of energy because all your cells are healing while your gut is trying to process food? I think there's a lot going on in there!

I've never had to recover from a serious illness before. If I get tired, I make it my job to rest. That's all I know to do.

Is that what you do if you get tired after eating and how on earth do you manage it with children???

Hey sorry I waited to reply... I wanted to wait til the kids were settled so I can focus.

It sounds amazing. I totally get the weight being lifted off when you are worried about other health concerns and that sort of holding you in a place where you don't know what next. Amazing that you got out and we're able to have a snack. I snack like crazy when I go out lol. I would say you are an expert in your field of medicine at this point that being your own body and what makes it tick.

The tiredness after I eat, I believe is related to Ehlers Danlos syndrome. But I do have gut issues and the new allergy thing I told you about will more than likely be contributing to poor gut health which might be exhausting too.

In EDS, they say because of the connective tissues being lax, digesting takes more work so uses more energy, more blood supply to the stomach being required.

In terms of how I manage with the kids, I've had this fatigue and pain for a very long time. I'm not sure I can remember any different in my adult hood. I had pain in my childhood but put it down to doing too much sport. I think I break things down into chunks and I don't think about the chunk that has just been. So in the morning, it's very hard to get up. Achey, headache, heavy. But once I do my focus is the kids and getting them out the door at 8.30 is the goal and I see it as a deadline so it becomes priority.

I did write it all out but then I wondered if your question was rhetorical so deleted it lol.

Usually as soon as I get in from dropping them off at school that's when I crash. I don't always eat at the same time as them. I usually don't eat before I get the kids into school and sometimes I pick up a chocolate bar on the way home. I will probably have a snack soon. Need to check on the kids, daughter sweats and every night once she is asleep I move anything that she might be hugging and if she's soaked, I'll move her covers off her chest (I have seen the Dr about this). She thankfully has stopped the teddy nest thing she was doing lol.

I think if I think of my worst days, I prioritise the kids, school, food, hobbies/music lessons.
the house work, my husband takes over (he doesn't do it as well as I do, but it helps lol . He can tell when I'm in a flair up. Usually my lips are blue and I'm freezing cold. He tries to warm me up. I've made a schedule which includes a game night and a movie night. So movie night, super easy, not very taxing but it feels special to them. Game night, I dedicate time to play and I force myself through it. Played monopoly the other day. I would like to be able to do more. Sometimes I take them to the park and I sit down and watch. It's very close to my house.
Very rarely, I might ask my husband to take them to school but I still make sure they are ready. I kind of save that for when it's really bad. So maybe 3 times in the past 6 months he has taken them to school.

[Jersey Girl]

In EDS, they say because of the connective tissues being lax, digesting takes more work so uses more energy, more blood supply to the stomach being required.

I need to save this for the next doc appointment. The blood flow thing going to the stomach (rest and digest?)...maybe some of this is related to me. He's good at explaining things in an understandable way. SIBO can cause nerve damage and I don't know quite how that factors in. I feel things I've never felt before. I've learned what some sensations mean and they don't scare me any more. It's like my gut is talking to me in a new language and I'm slowly learning what it's telling me.

I'll get back to you on the other! I just stopped in my tracks while reading when I saw your above and had to save it right away.

p.s. The Teddy bear nest was so adorable! <3

[IWMP]

In EDS, they say because of the connective tissues being lax, digesting takes more work so uses more energy, more blood supply to the stomach being required.

I need to save this for the next doc appointment. The blood flow thing going to the stomach (rest and digest?)...maybe some of this is related to me. He's good at explaining things in an understandable way. SIBO can cause nerve damage and I don't know quite how that factors in. I feel things I've never felt before. I've learned what some sensations mean and they don't scare me any more. It's like my gut is talking to me in a new language and I'm slowly learning what it's telling me.

I'll get back to you on the other! I just stopped in my tracks while reading when I saw your above and had to save it right away.

p.s. The Teddy bear nest was so adorable! <3

It's pretty cool that your gut speaks to you. You sound very in tune with what's going on in your body.

She is so sweet sometimes. Especially when she's asleep lol.