Pity Party- Sorry In Advance But Just Down

[StephanieL]

Why do things have to take SO long and be SO freaking difficult when dealing with this kinds of "stuff"?  It shouldn't take a week and a half to hear back from a Dr. or for blood tests to be gotten.  I should't have to do all this work. I am obviously willing to do the work but should I really have to?  And WHY am I doing it? I feel like I am just spinning in circles and for no apparent reason. 

 

Do I just stop? Do I stop trying to figure this all out for my kid and just go with what we're doing?  I just don't know what else to do or how to get people to listen. I use to think i was a really great advocate for my kid but lately I feel like I am making him go thorough things that no 7 year old should have to. I'm starting to think it is all in MY head and not even his. 

 

Sorry. Just really REALLY having a rough time these past few weeks. Thanks for letting me vent. I can't to DH, can't to anyone really IRL cause none of them get even a little bit of it...

 

 

[LauraTX]

I understand how it is to not have the support of people IRL because they don't understand.  All of 2013 I got diagnosed with my many major chronic illnesses, and no one seemed to give a hoot even though it was the hardest time of my life.  Then I had my gallbladder taken out and when a relative called me asking how I was, I was peeved because a simple surgery was nothing compared to dealing with autoimmune diseases.  But you can't fault people for a lack of understanding.  If you try to fix stupidity you will just drive yourself crazy!

 

One way I cope with my plethora of sucky conditions is just to have days where I mentally take a step back.  You don't have to physically go anywhere, just do something one day where you check out of reality, whether it is a fun day, quiet day at home, whatever makes you happy.    

[icelandgirl]

I hear your frustration and get it. IRL I don't have anyone that gets it either. I have people who love me and try...But it's not the same.

I've been struggling with thoughts of why do bad things happen to good people...did I do something wrong to make this happen etc. Driving myself crazy.

Bottom line is you have to get it out...so let it all out here. People on here will understand and care.

I'm sorry that you are having such a hard time. It shouldn't be this hard. Jmo

(((Hugs)))

[GF Lover]

(((HUGS)))

 

Hang tight!

 

Colleen

[dilettantesteph]

I can relate.  My son was 10 at diagnosis and 17 now, and I can still relate.  Administrators at the schools especially didn't understand.  I think that they didn't want to understand.  They don't get their tax dollars on sick days.  These fad GFers really don't help with people thinking that it's in your head.  Stick with it.  Don't let them get you down.  Take it one piece at a time.  It is worth it.  You do know your kid best.  You can tell when he's sick.  Things will get better.

[notme]

"oh, you can't eat wheat?  that's it?"  <shyeah, i just got back from vacation, explaining all the way...)  

 

NO, THAT'S NOT JUST *IT* - get away from my food with your crumby hands.  you just stuck the pasta spoon into the salad.  thanks.  haha, you accidently drank my beer.  thanks.  no, you can't have a bite...........  or kiss me on the lips........

 

(((hugs)))  hang in there, mama.

 

(i spent $6 on 3 cookies and they suuuuuuuuuuuuuucked.    )

[Gemini]

I understand how it is to not have the support of people IRL because they don't understand.  All of 2013 I got diagnosed with my many major chronic illnesses, and no one seemed to give a hoot even though it was the hardest time of my life.  Then I had my gallbladder taken out and when a relative called me asking how I was, I was peeved because a simple surgery was nothing compared to dealing with autoimmune diseases.  But you can't fault people for a lack of understanding.  If you try to fix stupidity you will just drive yourself crazy!

 

 

Very well stated, Laura!  My brother is a Type 1 diabetic and a Celiac in denial and my family get the diabetes thing well.  Which doesn't sit well with me because it's a food related, autoimmune illness also.  What don't ya get about Celiac and the plethora of other AI diseases I have too?  I am blessed that I really don't have too many bad days in a year anymore but I worked hard to get to that point. 

 

The remark about fixing stupidity was priceless! 

[StephanieL]

Right now the frustration is with the medical machine  School has been great really. Family/friends- ehhh.  I did have to laugh a few weeks ago when someone stated "Oh I can't risk putting this med in a cooler!" when I was explaining a way she could have easily done so. A way we do with DS's epi pens. Ya know, the only think to keep him from dying when exposed to several foods. So no no no, you can't rise it with that drug you mention.  That would be silly!!   It really floored me when she said it like her meds (which ARE very important for her right now, she's going through IVF but more important than Epi?  I just don't see that but then again that is my life so I get her view is a bit different!)

 

I am frustrated that a Dr. GAVE us 2 options 4 years ago to go with. I am REALLY PO'ed that this same Dr. is now suggesting a gluten challenge. When we went to this Dr, they did NO blood work at the hospital and wouldn't order it when they saw how old ours was (thanks for telling us that when we were THERE). Then won't order it (have your ped do it). They aren't interested in a scope NOW after 4 years gluten-free which doesn't compute at all with me. So if we challenge that basically negates the past 4 years of gluten-free diet.  I feel like that means we go from A to C and completely miss ANY useful information that could come from scope B.

 

Frustrated and PO'ed and lost.  

 

Thanks for the pep talk ya'll.  Thanks for getting it!!

[BlessedMommy]

A gluten challenge?!

 

Are they doubting that he has celiac?

[StephanieL]

A gluten challenge?!

 

Are they doubting that he has celiac?

 

Yeah I guess.  Not really sure why.  He had a sky high tTG, negative scope and all the genetics. They said we could do gluten-free and see if his tTG's came down or we could rescope every 6 months till there was damage. Yeah...no. He was 3 when all this %*@& started. I wasn't going to scope my 3 year old every 6 months thanks!

 

So we follow the advice and are still in this crapola place right now where no one knows what the heck is going on!!!

[BlessedMommy]

Seems pretty clear that it's celiac, assuming that he had improvement on the gluten-free diet. (unless they think that he has Crohn's or there's some other good explanation for the high Ttg?)

 

I honestly don't get why the biopsy is the gold standard for celiac. It is essentially telling you, "Until you are damaged enough, we won't say that you have celiac. So go on your gluten eating way and when you're sick enough, we'll give you our medical endorsement to eat gluten-free." 

 

What did Dr. Fasiano say? Seems like with the above factors, he would DX your son for sure.

 

Did his Ttg come down on the gluten-free diet?

[StephanieL]

He was asymptomatic for the most part when this started, he was 3.  His tTG's have come down but even after 4 years never normalized. That's what we are trying to figure out. Why his tTG's are still elevated.

[BlessedMommy]

Oh okay, I see. 

 

Have they tested for and ruled out other conditions such as Crohn's?

 

I hope that you find answers soon!

 

I'm curious, did you have him initially tested because of family history if he had no symptoms?

[beth01]

This is what frustrates me most about this disease... unless you are seen by a specialist, someone who really knows celiac disease, you are a science experiment for the doctors.  They really have no clue. If I have a problem now and need to seek professional care, I research my problem well first so I have some clue of what is going on and know I am not getting pushed around.  Doctors are so maddening sometimes.

[StephanieL]

Our Dr. DID consult with the top people which is why I am so beyond annoyed. 

 

He doesn't have any S&S right now aside from no weigh gain and still elevated labs.  He has developed another AI disease (hypo assuming Hashi's thyroid). Seeing as how he's already developed another AI I don't want to keep letting it slide like an oh well.  I don't think it's anything but this so no, we haven't looked into Crohn's or anything. There's nothing that suggests that would be even a possibility. 

[BlessedMommy]

I'm so sorry that you're having to go through all this.