I can't win! VENT

realisticdreams

"crap just found out chronic granulomatis disease is terminal"

-->You're a hypochondriac

OK!?  Because I asked for the labwork that took 2 months to get straight with insurance and to find a place that would do donor blood.  

Picture of M at the dr's office for a bunch of target/bulls eye rashes 

--->"she looks fine to me!"

eyeroll.

Me Friday, "They don't have it!!!  I never want to hear about chronic granulomatosis disease ever again, I wonder how much this test cost, though!"

--->"Dude, your kids will be fine, i mean seriously if we all got tested for every random genetic mutation or condition, most of us would probably have it, sit back and relax for once!"

Me: It's an immune disorder that's fatal, 35% of the kids will die by the age of 10 and Morgan had almost all the symptoms, it's x-linked which is why they made P get tested as well.

Her: That sounds awful, but they don't have it.  I think your kids are going to live happily and healthily ever after.  Don't stress yourself.   

 

OK so seriously, if I tell people what's going on they think i'm a hypochondriac, if I don't and then Peyton has surgery or something they don't understand why because it's like they were healthy & bam...but when people say things like that it just gets under my skin SO BAD.

Happy & healthy?  OK because my 2 year has seen a shrink about her anxiety and emotional distress about something she is supposed to do every 3 hours a day.  Does that sound happy?  And I'm fairly certain her having the Mitrofanoff procedure done and shooting enemas through her belly button and cathing through her belly button is in no way considered 'normal health'.

Sometimes, I just really want to scream at people and ask them why they are stupid and don't think before they speak to me.  This came from a person who I would never have expected it from. 

Ugh, sorry everyone, it just really sucks not knowing what to say or how to tippy toe around things, especially since Peytons uro issues are so private.

OH wait wait lol let me throw this in for kicks and giggles, really good friend from home..but she's kind of..blonde, we were talking the other day and she said this..

"Do you think she will be one of the smarter kids in the special needs preschool **she didn't get in this year but we hope she will be accepted as an NT peer next year** because shes on the end of the sprectrum?"

I looked at Tj and I was like..what the H do I even say to that, so I just told her Peyton's issues were medically related mostly and that she as of now isn't on the autism spectrum..and seems to be neurotypical or a little bit advanced (not emotionally, though) according to the psych and a couple other doctors.

"That's amazing! She can help the other kids in her class. I wonder how she will interact with the kids with serious disorders."

Again, LOL serious disorders?  lol I think becuase the girls LOOK visibly "NORMAL" people really have no idea what they have been through and will have to go through in the future.  But I was just like you mean like the kids she plays with at the doctors offices who have limb deformities or who are in wheel chairs?  She doesn't notice she does fine, she's around special needs kids more than typical children.

what's wrong with people!?

 

gimmietimmies

Whoa, so much of this sounds familiar. Short version is you're damned if you do, and damned if you don't. This is why I am glad that we have a few doctors that take schit seriously, and I never tell friends, and most family for that matter, what is up with L. They have zero idea, none. They just assume he's a chubby lazy teen. It really is easier to deal with, rather than to, well deal. I'm lifting my glass to you tonight RD.  

MaxandRuby

I am so sorry you have to deal with people like...and it sounds like on at least a somewhat regular basis. Ugh. You are in my thoughts and I hope you, your H, P, and M all have a great day today.

finsup

Yeeeaaaa.  A big fat FU to all of that, and a hug for you.