The hoops we jump through...

[izzi'smom]

:boring:
Please just ignore me as I need to get this out, but I am so irritated with the insurance company...after the doc requested every other week injections the insurance company approved us for twice monthly ones. Which isn't the dumb thing...when I called to inquire, I was told the doc's office needs to call to get it fixed, even though the insurance company made the mistake.
So today alone, I have called the docs office twice, the pharmacy, the insurance company, and the drug company. *ARGH*

I am also irked with my mom, who suggested the makers diet. When I said that I was already given the book and have tried a super severe diet already (that failed), she said "It's not *just* diet". The ensuing conversation=not pretty
I am not an atheist. I also don't go to church every week. I feel as if she is saying that if I were more religious, my child wouldn't have Crohn's. If only I believed, she would miraculously be cured.
If I were to believe in this, you would think we would scorn those parents that lose their children. They must not have prayed hard enough to save their kids, right?! Completely not the case. Parents of all types have children with disabilities and life threatening conditions. I believe that faith does two things...helps to keep us honest (kind, giving, etc); and gets us through...good times but especially bad. Can it help? Absolutely, but I don't believe it can be a solitary alternative to medical treatment... I am so frustrated with her I could scream!!

I shouldn't post this as it has the potential to be a hot button topic, but I feel safe venting here. Please don't take offense to my post: to each their own. Religious beliefs are as diverse as the meds we take...different things work for different people.

 

[mikeyarmo]

Hi Angie,

Sorry for all the trouble you have experienced lately . I think we all have had days when nothing seems to go our way or we have to deal with people close to us who do not seem to really understand what it is like to go through or care for someone with Crohn's.

I think sometimes people are so frustrated at not being able to do anything about a situation themselves (like how someone they love is being impacted by Crohn's) that they say things out of desperation that on second thought they would likely agree was a mistake. This is how I at least try to justify the situation when I feel a family member or someone close to me says something I find really offensive or out of touch with reality related to my Crohn's.

I don't know where the insurance company came up with that policy either.... doesn't the original instruction they received tell them the correct freqiency? Hopefully the doctor's office will be in touch with them soon and this situation will be resolved.

Here is hoping that tomorrow goes much better than today! :heart:

 

[izzi'smom]

Ahhh...thanks. I just needed to type it all out and am feeling far better for "sharing" regardless of who reads it My mom has our best interests at heart, but I am not sure she realizes our daily struggles. In my own twisted way it feels as if she is saying "You could be a better mom if you would just x, y, and z".
The doc specified every two weeks according to the insurance company...who approved twice a month. But they require the docs office to call them to correct their own mistake, even though I pointed it out. It just sounds silly to me.
Our new drug is scheduled to arrive Thursday, though...seems the squeaky (or really annoying )wheel gets the grease

 

[littlemissh]

I think sometimes those around us feel as frustrated by the disease and the never ending 'let's hope this will work'. Because of this they worry and then say things without thinking them through, just as we do when anxious etc. I know I have been snappy at my own children and immediately regretted it. Luckily they forgive easily. )
Both my mother in law and my own mum have said some pretty ridiculous things...if you just ate a bit more you wouldn't lose weight etc etc. My sister in law told me that my mother in law said that it all probably started due to my not wearing a vest and getting a chill because of it!!! But I reckon they just need to find something to say to try and help.
Luckily I have not received a parcel of vests in the post. Also luckily my Hubbie is happy for me to have a bit of a vent when silly things are said....

Hope you get your insurance sorted, the last thing you need is to be chasing your tail trying to fix other people's errors!

 

[Dexky]

Perhaps you could ask the insurance co. to give you a dosage schedule for twice a month. Tell them it's very important this drug be given at regular intervals and see how they work it out. I'm sure Izzi isn't their only patient on Humira. They know the schedule!!

As far as your mom, just say mom I love you and am thankful for you but you never experienced anything like this. I know you mean well and I know you'll keep praying. I pray too! I pray God will guide us and all those in charge of Izzi's care and all those around the world researching this disease and looking for treatments and a cure.

 

[Lisa]

aarrghhhh...yup - every two weeks does NOT equal twice a month.....hope that gets straightened out soon.....

As for parents - my Dad for YEARS tried to 'blame' my crohns' on everything from diet to 'bugs'.......uugghhh.......and I posted somewhere that last year my Mom (in front of me!)...while sitting at a dinner leaned over to the woman next to her and as she was introducing me stated 'she's not well'...umm EXCUSE ME?.....yes, I love her dearly, but that IS NOT how I like to be spoken about!

We all shall persevere!.....

 

[Tesscorm]

I suppose we've all dealt with well-meaning family, friends, etc. My mom is also always just 'suggesting' advice but I always feel there's the implication that I'm not doing enough... there's ALWAYS one more thing I should be doing, one more idea I should look into, one more friend who did this or that, etc. Ughh!! I completely understand she loves the kids, worries and wants to help but... instead of being someone I can lean on, I avoid telling her things because I know I'll regret it later! And, OMG, if I tried to tell her 'thanks, but no thanks' (in a nice way), well... then I'd have to deal with the conversation that she's just trying to help, everyone else can voice their opinion but when she says something..., that no one ever listens to her, etc., etc. :ybatty: I can't win! I hate to say this but I've often thought thank God she was out of the country when Stephen was diagnosed! She would've been at the hospital 24/7, crying, worrying, questioning, blaming, etc.! I truly would've ended up in a psych ward! :lol:

Angie, I guess we all just have to smile and bear it... I'm guessing the alternative might just not be worth it! When my mom becomes 'too much', I just say 'Oops, gotta run mom, Stephen's/Emily's calling me and they're out somewhere in the car alone!'... :ytongue:

And, I hope you get the insurance worked out quickly - ugghh, certainly not something else we should have to deal with!

:heart:

 

[imwood]

Ooooh wow, I do'nt kow if I could handle that gracefully. My boyfriend's dad & girlfriend, who are neo-Nazi-far-left-right-health-nut-anti-medical-establishment-freaks who claim to have cured people with mere weeks to live, by putting them on "pure" diets, told him when we got campylobacter "you guys are too YOUNG to be this ILL all the time!" as if it was somehow our faults that we got sick.
Like we're out gobbling McDonalds and Doritos and bathing in BPA every day, and if we ate perfectly like them, swallowing a big cupful of campylobacter bacteria would have done us no harm.
They also want us to move to NYC so they can control the diet of me & Rosalyn and "cure" our autoimmune diseases, because we are "doing it to ourselves." Implying we eat crappy food 24/7 (we actually eat incredibly healthy & pure diets, and rarely indulge in mainsteam "western" treats) that is making us sick, and we're choosing to be sick.

I love the 'Helpful' advice people give.

You guys should all check this out: http://www.butyoudontlooksick.com/articles/sick-humor/sick-humor-the-top-ten-worst-suggestions-commonly-given-to-someone-with-a-chronic-illness/

 

[littlemissh]

lol, there's nothing quite like a campylobacter burger. In fact I regularly stand vestless in freezing weather chomping on a campylobacter burger with a c. diff shake to follow!

If only I could break that habit and I would be cured!

 

[Tesscorm]

LOL... it must definitely be the cold! as I'm constantly questioned if I've made sure Stephen is dressed warmly enough! Forget the fact that he is 17 and I don't dress him anymore! :lol:

My mother is the ultimate worrier (OMG, don't let me become like that!!!) - my kids are 17 and 18 and she worries if my husband and I are out late and leave them at home... I get "ooh, are you leaving them home alone? :eek2:" doesn't count their ages, that they lock the doors, we live in a nice neighbourhood, have an alarm AND a doberman! :lol: I've told her the only thing left to do is hire a full-time bodyguard for each of them!

 

[littlemissh]

LOL... it must definitely be the cold! as I'm constantly questioned if I've made sure Stephen is dressed warmly enough! Forget the fact that he is 17 and I don't dress him anymore! :lol:

My mother is the ultimate worrier (OMG, don't let me become like that!!!) - my kids are 17 and 18 and she worries if my husband and I are out late and leave them at home... I get "ooh, are you leaving them home alone? :eek2:" doesn't count their ages, that they lock the doors, we live in a nice neighbourhood, have an alarm AND a doberman! :lol: I've told her the only thing left to do is hire a full-time bodyguard for each of them!

Who needs a bodyguard when you have a mother...or MIL!! Just wait though- that will be us before we know it.....aaagh

 

[Tesscorm]

OMG, that's what scares me! :lol:

 

[izzi'smom]

Oh. my. you all have me rolling here...one more reason I love you all.
Of course chronic disease come from no vests in cold weather. and wet hair.
That website is Hilarious. too funny!
Tess, is your moms name Kathy by any chance? If not, I swear they are related...I *know* I have some Canadian ancestors.

 

[Tesscorm]

Oh yeah, forgot about the wet hair... that is usually part of the question re my letting Stephen go out without dressing him warmly enough AFTER his morning shower! LOL Poor kid, bad enough that I have to ask him, a 17 year old 6' hockey player, about his poop, now, perhaps I should insist on towel drying him too! :rof: I'm sure that would go over very well!

And, Angie, no Kathy here... however, I'm sure they're all related to Marie on "Everybody Loves Raymond"!