I'm exhausted...

[LaurieG]

I'm sorry. I know I haven't offered much positive on this board lately. I hate to spread negative energy, but maybe some of you are feeling this way too and we can pick each other up.

I'm completely burned out on my dd's health, and my own. I'm so tired. Physically, mentally, emotionally. I'm tired of weighing myself every few days figuring surely this time it will be up only to see my weight continue to drop. I'm tired of running to doctors and nutritionists and labs. I'm tired of thinking about poop and gut permeability and yeast growth.

The nutritionist we saw last week urged me to take dd for a second opinion from another pediatric GI. I agreed because it does make sense, and we really need to get dd to grow (she's well below the 3rd percentile lines now) and now her GI / food sensitivity issues are affecting her thyroid too. But I have zero faith that a GI will be of any help and I just simply am tired of going to doctors.

Is anyone else downright exhausted?

Maybe I should go to bed.

[kjbrown92]

I'm exhausted and should go to sleep since I have to get up in 6 hours, but I don't know how much sleep I'm going to get with DS screaming in his sleep for the last hour (and if history is any indication, this will go on for the next 4-5 hours). I already feel like I've tried everything and now I'm going to try something else (anit-yeast war) and see where that gets me. But I'm with you. I need a break. But now that I've figured out I have food intolerances, it's not like I even get to go out and have food without them (and I still have to make the whole meal even if I'm not going to be there because no one else can do it). It's been 8.5 years. I've had enough (but not enough to declare defeat!!).

[changingseasons]

Yes, yes, and YES. Completely and utterly exhausted over here. I'm tired of finding new doctors, new supplements, new ideas, getting my hopeS up that we might finally get some assistance or relief... only to have them fail me once again.

Kathy- I really don't know how you do it. 8.5 years. wow. I'm on just over 10 months here, and I am B.U.R.N.T...O.U.T.

[kjbrown92]

Who gets the longest suffering award? There's an award I want... gosh, the sarcasm just doesn't come through on here.

[crunchy_mama]

I am on the very edge of my rope lately. Very, very edge. The main issue w/ me is the behavioral ramifications w/ Luke. Feeling like I am the worst mother in the world. Feeling like he would be better off w/out me. Wondering why it took me this long to follow my gut and get him off of this food. I am seeing improvements though, his appetite and palate have both increased since going gf/cf- his bm are way better. After removing other things in his diet; perservatives, colors, and salicylates I have noticed more behavioral improvement- but I still wish it would come faster.

We are trying to start the Feingold diet and I live in a small town and can hardly find lots of the food on there- we eat mostly whole foods but innocous things like lemon juice or pecans I cannot find here that don't fit into the narrow list of brands they have. I cannot do any shelled nuts as the bags are sprayed w/ perservatives-organic or not- and I really don't want to add shelling nuts to my list of things to do. I cannot give him rice milk- as the only brand approved in my area is not gluten-free, we cannot do almond as it is a salicylate, no approved coconut milk in my area- and the brands online were out of stock- and no hemp milk around here either- the poor kid just wants some chocolate milk(homemade syrup) and I cannot give it to him. I would like to give him some treats after taking away so many things and I cannot. Halloween is coming up and I have no idea what we are going to do. I don't even want to try and explain this to everyone. I tried to tell my mother today about some of it, but I couldn't even give her all the details as it is just too painful to talk about. Yet, I know I don't have an option of not dealing w/ this. I am his mother I have to- that is part of the job.

I just wish we could get a break. Things were just starting to get back to normal after the house burning down and now this, I feel like things won't stop spinning and I keep going under- I do have faith though. I have faith we are on the right track, finally. God has given my that consolation. some real life support would be good though. Dh is great, but he really doesn't get the magnitude of it all. I have a cold right now too though and that makes me even grumpier.

[chlobo]

I am so there. I fell off the wagon. Not hugely but enough. And I just cannot quite get back on. And I have no idea what to feed my son. He doesn't try the things I think are safe & begs for crappy stuff when he sees my dh eating it. I have a list of new practitioners of various types but I just can't decide which one to try next. I'm tired of wasting time & money with no results.

[stayo22]

I understand completely!

I feel the same way. I think I freaked my hubby out last night because I had a break down. He is use to seeing the "we can handle this, I'm strong" me. But these health issues are just breaking me down. It certainly makes me realize how happy I will be when one day I wake up and my body functions as it should.

I have such bad eczema that I don't want to leave the house. It is embarrassing - people stare at me. It covers my arms, neck, face, ears, and scalp. Now my daughter has it and it seems to be getting worse. There are other little problems that have come up since giving birth and they just add to the misery that is my life right now.

I feel like our government, like they are throwing tons of money at a problem they don't know how to fix - I feel that I am throwing money/supplements at a problem I don't know how to fix.

I've about decided to go see an alternative medicine dr who is outrageously expensive. We don't have the money for it but we are going to use some of our savings. I'm terrified that if he doesn't help me I might really lose it.

Ok, enough of my complaining...I will try to end with something positive...one day I will look back on all of this and think..."That was ROUGH!"....I can't wait for the day to come that all of this is just a memory!

[Wugmama]

Big, big

to all of you! I'm tired too, but I think I'm in the best boat of all of you right now!

The last two days it has taken all of my will power to not grab the cinnimon ice cream and scarf it down. It helps that we got some coconut ice cream, but we were out, and the other was on the table. And at the meeting at work today there were bagels. I found myself staring at them thinking, just one wouldn't hurt... It feels like an eating disorder. I'm so tired of feeling hungry and deprived. I'm so sick of the lack of support from my dh for helping me get more calories into myself and my baby. I just can't manage to get things cooked or baked, and there is nothing handy to eat but Koala Crisps - thank goodness for those!

Stayo22, have you tried going off of wheat and dairy?


Tracy

[kjbrown92]

Now that I'm trying the get-rid-of-yeast diet, I can't even have the Koala Krisp cereal. I'm having such sugar cravings today it's ridiculous. Maybe this has been my problem all along.... I'm feeling better today than I was last night. At least we're all here for each other. My DH doesn't get why I'm on the computer. I say, "they're my friends even though I have no idea what the heck these people look like or what their religion is or their political affiliation. It just doesn't matter. We bond over not being able to EAT!"

[lil_miss_understood]

Originally Posted by kjbrown92

Now that I'm trying the get-rid-of-yeast diet, I can't even have the Koala Krisp cereal. I'm having such sugar cravings today it's ridiculous. Maybe this has been my problem all along.... I'm feeling better today than I was last night. At least we're all here for each other. My DH doesn't get why I'm on the computer. I say, "they're my friends even though I have no idea what the heck these people look like or what their religion is or their political affiliation. It just doesn't matter. We bond over not being able to EAT!"

I'm in this boat, despite my recent failings/cheatings. I hate not being able to just feed the ds's something "easy" without putting 2 days of thought into what's going into a meal.
Kathy, you put it so well. That's how I feel too. DH doesn't quite get it either here.

[kjbrown92]

My DH thinks I'm "wasting time" on the computer. Little does he know mothering.com is what's keeping me sane. At least I know there's a lot of other little boats out on the vast sea of food issues. Sometimes I feel like I'm paddling in circles, other times I feel like I'm getting somewhere, sometimes I feel like the sharks are circling, and sometimes I have no idea how I got here!

[mommydancer]

I stay up an hour or more most nights just to have the chance to read the posts since my last log on...and because I get home late, then eat food (yeah right...like rice and chicken woo hoo), then put DS to bed, THEN log on...I am up till 1 or 1:30 many nights. It is so helpful to see and dialog with other moms who live in...well, similarly hellish circumstances.

I have been doing this for 22 mos. now. I have had around 5 of those breakdowns...Stayo22...so don't feel bad. I actually yelled, screamed and made DH eat rice bread on one occasion. The windows were open, so I am sure the neighbors heard me yelling "eat it...eat it or so help me...!"

We all find a breaking point...this is just too hard. I usually recover pretty quickly, I have a good reserve of stubbornness, and I have been proven right often enough to know the MD's who discount my concerns aren't as smart as their shoes.

I think what wears me out the worst is the constant, relentless worry that I haven't caught everything, and that he's still reacting. I feel scared that I am missing something and scared he won't grow out of it and scared I forgot his bone broth, or to write today's meals, or to leave food for DH to give him while I work, or whatever. All that scared really takes a toll. I have never felt so beaten up and worn out, and I have been around the block as far as medical issues prior to this, so I have a pretty tough skin.

One more sucky thing. All my friends have backed away. When you go thru something this hard for this long, I think they run out of stuff to say trying to be supportive. They don't understand why i don't quit. Some of them feel guilty because in talking about my DS, i mention things they have seen in their own kids that they ignored. They just back away. So many events involve food, and that means so much work, that I would rather just not go. So it is really isolating.

[lil_miss_understood]

Originally Posted by mommydancer

One more sucky thing. All my friends have backed away. When you go thru something this hard for this long, I think they run out of stuff to say trying to be supportive. They don't understand why i don't quit. Some of them feel guilty because in talking about my DS, i mention things they have seen in their own kids that they ignored. They just back away. So many events involve food, and that means so much work, that I would rather just not go. So it is really isolating.

Yeah, I've been experiencing that.
One of my best friends for years has stopped calling me because we had an argument about ds1's diet. Her son has a lot of the same issues ds1 had (ADHD like symptoms, anger issues etc) and I was saying that maybe she should try taking him to an allergist. Her response was basically "I'm not rich like you." Um. Firstly, I'm not rich. Secondly, you live in Canada and all the tests would be free for you and thirdly, you're on assistance so any increase in grocery costs for dietary changes for medical reasons would be covered. :
The last birthday party we went to, I just took one of ds1's So Delicious bars rather than baking a whole cake just for him to take one piece. I'm so tired of having to make everything "special order".

[kjbrown92]

I guess I'm lucky then in some things. We're still invited places. At our family dinners once a month (round robin but only 2 out of the four families can host because of cat/cat allergy issues), it is all food that my kids can have. My SIL is very good about checking every ingredient with me (my half-brother is lactose intolerant and she's hypoglycemic so maybe they just understand better than most). And to any of our friend's parties, we just bring our own food. I do hear you though about the people backing away that should be listening!! I have a neighbor whose dd is ADHD and autistic and I soooooooo want her to try at least GFCF (since all she eats are things like mac & cheese, bagel & cream cheese, pizza -- hello? do we see a pattern here?) and she says she's too tired/depressed to do a diet with her because her behavioral issues are so bad. BUT MAYBE IT WOULD HELP and you wouldn't have to deal with the behavioral issues. I've brought it up a few times, and she did read one article that I gave her, but she pretty much changes the subject.

Survival tactics:

• I make cupcakes and freeze them, and thaw them whenever my kids need a special treat for school or a party
• The rotation diet we follow and all my kids food results is posted on the refrigerator
• All my recipe cards are marked which child they're safe for and which day on the rotation (up in the corner) -- I'm in the process of doing this to make it easier for myself
• Go on here and read about people worse off than me and commisserate about how much it sucks

[LaurieG]

You Mamas are great. I'm feeling so much better today.

I'm going to take 1 day at a time. Today the most important thing I need to do is eat 2500 calories. I'm at 1420 so far and its really hard, but I will do it.

People who haven't been through it really can't understand. I often wonder if I'm a hypochondriac. Maybe dd is really fine and I'm making these things up. Maybe she is just very little and it has nothing to do with anything being "wrong" with her. Maybe I just need to stop pushing the issue. Maybe I'm actually crazy.

My mom asked me today if I have made a decision about dd's birthday cake. I told her I was planning to do pumpkin muffins with a frosting made from almond milk. She said in a very disappointed voice "Why muffins? You know a cake is tradition. She should be able to play in her cake." So I explained that I'm not comfortable with that much wheat in 1 sitting and I couldn't find a wheat, dairy, and soy free cake recipe that looked good to me but I did find this pumpkin muffin recipe with alt. flours and she can play in that. Why do I feel guilty like I alone am making the decision to deprive my baby of the joys in life?

[lil_miss_understood]

I'm not sure if you want to take a look at this or if it contains something else you're avoiding (besides dairy, gluten and soy) but I've made Dreena's gf vegan chocolate cake with vanilla rice milk (and vanilla almond milk) instead of soy milk with great results. It's really simple and my "fall back" cake usually.
Just thought I'd throw it out there. I've had kids and adults (non-vegan gluten eaters) eat it and think it was "the real thing".
And you're not depriving your baby of the joys of life. I totally remember dealing with that attitude when I was first struggling with getting ds1 off food coloring (the first of his intolerances/allergies to be addressed).

[kjbrown92]

What's the difference between a muffin and a cupcake anyway? The frosting? So make some frosting (corn-free confectioners sugar and a little rice milk will make icing, or add some palm shortening and you've got fluffy frosting). Viola: a cake (and if it's pumpkin at least it's got a little nutrition in it).

[crunchy_mama]

On the b-day cake I made a grain-free, dairy free chocolate cake for her. I broke it up and layered it w/ sliced strawberries and some whipped cream for the adults, they all raved on and on about it. It has eggs in it though. I just made it into cupcakes for the kids dusted w/ powdered sugar for the kids. Lily ate like 1 bite. Mostly the cake on the first birthday is all about the parents wanting to see their kids make a mess- I don't know why but that is such a big deal for them. I would link the recipe, but allrecipes is not working for me right now.

[changingseasons]

Originally Posted by LaurieG

You Mamas are great. I'm feeling so much better today.

I'm going to take 1 day at a time. Today the most important thing I need to do is eat 2500 calories. I'm at 1420 so far and its really hard, but I will do it.

People who haven't been through it really can't understand. I often wonder if I'm a hypochondriac. Maybe dd is really fine and I'm making these things up. Maybe she is just very little and it has nothing to do with anything being "wrong" with her. Maybe I just need to stop pushing the issue. Maybe I'm actually crazy.

My mom asked me today if I have made a decision about dd's birthday cake. I told her I was planning to do pumpkin muffins with a frosting made from almond milk. She said in a very disappointed voice "Why muffins? You know a cake is tradition. She should be able to play in her cake." So I explained that I'm not comfortable with that much wheat in 1 sitting and I couldn't find a wheat, dairy, and soy free cake recipe that looked good to me but I did find this pumpkin muffin recipe with alt. flours and she can play in that. Why do I feel guilty like I alone am making the decision to deprive my baby of the joys in life?

Maybe we're all crazy. Seriously.

Well, tell your mom that some people didn't get to play in ANYTHING for their birthday... I felt like the most lame mom in the world on DD's birthday last week (wait- I think it was the week before.. I'm losing track of time here). We did nothing. No party, no friends, no food, no cake. (We did go to the aquarium and hang out with some fishies for a while, so that was fun.) We just felt like- what's the point? People will want to bring food, or expect to be served food... and we only have like 3 foods in our diet at the moment, so that would be a lot of fun for everybody. Here you guys- have a lamb burger and some broccoli cake. :

I hope that didn't come out wrong... my brain is so fried these days. I just wanted to you feel a little less guilty about not having a cake for your LO's birthday (not make you feel bad for what you can have.)

[Wugmama]

By MommyDancer:

I have been doing this for 22 mos. now. I have had around 5 of those breakdowns...Stayo22...so don't feel bad. I actually yelled, screamed and made DH eat rice bread on one occasion. The windows were open, so I am sure the neighbors heard me yelling "eat it...eat it or so help me...!

Where is the "I almost wet my pants I was laughing so hard" smiley???

I think, "eat it or so help me....!" is going to go down in infamy in this forum, along with my virgin chicken comment.

~Tracy