i gotta vent again

[Jena]

i'm trying really hard to be patient with-all of this, the process, difficult child, yet there are times i'm totally frustrated beyond belief. have no release for it and just wanna shake her to be honest.

i sit here each day with liquids, watchiing her now chewing foods and spitting them out her new thing now to get the taste. her telling me shes starving yet the kid wont' swallow food.

i walk into her room it smells like pee, she's been wetting bed every single night, mattresses are shot. stupid dr from princeton told me chuck pull ups so we did he said it made her feel "special" jerk. so long story short we went with-that thought process. now it's too late mattresses are ruined and honestly i dont' wanna tell husband guess what we gotta go buy two mattresses now also.

her room's a freaking mess, she's hoarind beyond belief. i didnt' clean it because i don't wanna raise her anxiety of throwing junk out.

basically i've just had it at this very moment. i'm tired, look like **** each day, have absolutely no life or time to even go to a store alone, or walk my dog alone. i'm tired of her telling me she is starving yet can't swalllow anything. i'm finding this is turning into our way of life. what was supposed to be a bump in the road is now the road.

she's laying in bed right now sucking peanut butter off a spoon and drinking milk because she's starving. i have been doing a great job of making like life's normal, being calm, etc. yet i've freaking had it. i really have.

thanks for letting me get that out. ahh breath

 

[HaoZi]

You sound like you need some "me time" and those plastic allergy covers for mattresses work great for protecting them, too. Worth the extra bucks when you replace them. Discovered that when cat used to get mad and pee on kiddo's bed late at night (even the cat is ODD I think).
*HUGS*

 

[Farmwife]

I'm glad you recognize the reality of your situation. I know, I know, you are knee deep in reality every day...

It's been a long few weeks for you and difficult child. I have seen you post a lot of high drama events and am yet to see you find any real solutions or help. I don't mean to be snarky by any means. Just concerned and lost track of what your plan is, is there a plan? What are you still waiting on? Obviously your difficult child is very very ill and needs care that is beyond even a superhero parents abilities. She needs help, you need help.

I guess I am confused what the delay is to get her a higher level of care. Insurance? Dr approval? Last I recall you were waiting for a certain doctor to feel things were serious enough to step it up a notch. That confuses me even more because anyone with common sense would see that things are at a very critical point and have remained so for quite some time. I'm not sure if waiting for her to either need a feeding tube or eat a couple hundred calories more is going to solve the real issues at hand. It may keep her alive but there is so so so much more to be sorted out.

I know you are tired so basic things like making a shopping list or remembering if difficult child brushed her teeth can feel like climbing everest. I have been in that autopilot through hades with brain like swiss cheese zone. I get it! So what do you need to do to regroup and move forward? This just can't keep going on forever.

Have you started a daily log of her needs/behaviors etc. Maybe if you had a hard copy of what really is happening and could present it to docs in black and white it may help. So much is lost in a conversation of 5 minutes with medication staff when we are burnt out. Example: 9 a.m. woke up groggy, said hungry 9:30 a.m. feels sick to stomach, refuses to eat 9:45 anxiety attack when breakfast mentioned ect. ect.

Is it perhaps time for a second, third or tenth opinion or a doctor switch? So far from what I have seen your current doctor has done almost nothing to help you and you have been in crisis for how long now? Well over a month as far as I can tell. Heck, even a 3 month wait to see a new doctor seems like small potatoes now...you aren't getting the right answers so maybe you need to ask better questions or ask different people but this stuff has to end for your and your difficult child's own good.

 

[Jena]

i just posted to vent. that's all. not up for solutions tonight. thanks for input though. too complicated of thinking for me right now. i do appreciate the input though. yet too much for me right now

 

[Jena]

an eating disorder isn't something magically fixed, that i know. it takes time and patience medications therapy etc. just growing tired and needed to vent. it's not a typical board issue so alot of ppl are trying out of the goodness of your hearts to give me solutions. yet this problem is unique in itself and if anyone out there has suffered from it you know what i mean. just needed to vent my stuff somewhere. here is always the safest place so i dont' offend a family member

thanks.

 

[HaoZi]

You vent as much as you need to, hon. I've had friends with eating disorders, mainly anorexia and/or bulemia, not exactly the same but the under-eating physical dangers and lengthy recovery are similar and I have seen choking anxieties arise from them (I know that's not your case, just mentioning it because that's where I got the babyfood idea from). I know most of our kids don't get "cured" and mostly we're all running around putting out sporadic flare-ups and consider having a difficult child to be an on-going lifelong thing no matter what stripe it is, and we're learning and teaching our difficult children to get by as best we can. Sometimes you gotta deal with the immediate and it can drag out to the point where you're ready to run away from home just to seek some respite and recharge.

 

[smallworld]

Jen, hugs going out to you tonight.

I remember telling you on the phone the other morning that your daughter's choking phobia is the hardest thing you will ever face as a parent. I meant it, truly. In my 17 years as a parent, M's eating disorder was the scariest and most challenging event I've ever had to live through. Not only because a choking phobia is a rare disorder -- and therein lies the challenge because few understand it and can treat it appropriately -- but also because the illness places such incredible demands on the parent to sustain life. Let's face it -- you haven't had to be this responsible for your daughter's life since she was a toddler.

I'm not saying all this to make you feel worse. I'm saying it all to recognize why you feel so spent. It's no wonder.

I'm holding a positive thought for you and C that a solution is found soon. Again, hugs for your hurting mommy heart.

 

[Jena]

yea lol, i need like a week of therapy lol. and drinks. do you think there are therapists out there that do that drinks and therapy at same time? that would be awesome. i think i'd get alot more accomplished that way

 

[HaoZi]

I thought those were called bartenders?

 

[Jena]

lol ok that made me laugh. no i'm looking for some cbt and margarita? a hot shower would be nice, a hot meal, sleep.

small i know i pmd you had a question and i couldn't remember what you told me. shocking me forgetting something? wow let's not even get into my ailments. i'll eat up board they'll have to open another forum

 

[Marguerite]

Re the mattresses - when we had bedwetters, we held off replacing ruined stuff until the kids had broken that habit. There is stuff you van buy which can help with the smell. I know you don't want solutions, but I can't help myself! I thought it might help if you could let go of the new mattress issue anyway. Replace them when she's finished ruining mattresses for good.

Hugs, this is hard.

Marg

 

[Bunny]

((((hugs)))) , Jena. Vent away!! I know that this is really tough. In many ways this if worse that what I have to deal with. I know that no matter how terrible difficult child is behaving, he is going to eat and he is going to eat alot. That just how he is. I do not have to worry about whether or not his tantrums are going to be life threatening. You are worried not just about yout daughter's behaviors, but about the way her behaviors are effecting whether she lives or dies. That's very scary to a parent. But, you have come this far. You are an amazing woman and you will get though this! It may take alot longer than you ever thought or hoped it would, but you will survive this and so will C because she has you right there with her.

Pam

 

[susiestar]

{{{{{{{{{{hugs}}}}}}}}}}

You are doing an amazing job with a problem that is terrifying and all consuming. Vent away. You can only do so much, you are HUMAN. You are NOT a superhero but you are facing a task that even Wonder Woman would have a very tough time coping with.

Blow off all the steam you need to.

(((((hugs)))))

 

[Farmwife]

I apologize if I struck some cord with you. I totally get the need to vent and feeling like there are too many people handing out advice. Perhaps I didn't express my sentiment properly. I really am just curious what the "plan" is because your do have a unique case and you do have a particularly difficult challenge.

Just wondered if the plan is to wait things out or if you are waiting for a referral or some other situation. I am still a bit surprised each time it appears the medical professionals in chanrge of your difficult child don't seem to understand the levity of the situation. Maybe I am way off base and that is just my perception.

I usually feel better when I have a neatly filled in or even over filled calendar, a next few steps to pursue even if the crisis is ongoing. Although I understand that I do not understand eating disorders it seems like your situation is very dire and that maybe you needed more help than you were getting.

If the plan is to keep on doing what you have been doing then I missed that thread. Didn't mean anything other than that.

 

[Jena]

hey thanks guys i never read this after my meltdown that night

marg - WHAT CAN I USE TO MAKE THE PEE GO AWAY???

everyone else thank you.

farmwife i'm just a total witch it's not you it's me. ever hear that line? LOl truthfully though i just have these pure wanna beat someone moments as of late......hmmm scary

 

[HaoZi]

Best bet might be to check the pet store/pet dept for urine removers.

 

[Farmwife]

You were having a bad day, I knew that. difficult child's are good for helping us grow thick skin. I realy am glad things are improving for you.

 

[Jena]

aww i'm sorry now i feel worse!! i'm in high witch mode. a friend text me tonite who never bothers to actually make the time to call. she asked how difficult child was, than proceeded to say what b.s. it was how is oregon going to help us, best doctor's are here in n.y.

hmmm wanna guess what i did? lol. yup i planted her than shut off cell i'm a witch, witch.

 

[susiestar]

Walmart carries some stuff in the carpet cleaner section that is called "kids n pets". It is an enzyme solution that works wonders on pee smells. You have to totally SOAK the area with the solution though. If you have a mattress or carpet you should take a needle like for marinating meat and use it to inject the solution into the padding under the carpet and into the mattress wehre the urine soaked down deep. Then you have to let it dry completely. Right after you get it soaked the smell will get WORSE as the enzyme starts to work on it.

This is the most affordable enzyme solution that I have used. It is not as expensive as many of them are. The tip on injecting the stuff is from a different cleaner's directions. It works super well. We had a doxie that stopped being potty trained after a month and this worked well enough that she stopped going to a specific area to pee inside. Of course this was just before she ran away. Anyway, the stuff really works. If walmart doesn't carry it in your area, go to a pet store and check out their enzyme cleaners.

 

[Marguerite]

marg - WHAT CAN I USE TO MAKE THE PEE GO AWAY???

We can get this stuff called Nilodor which is designed for removing pet urine (and other nastier) smells. We also used a vinyl sheet (we bought a length of vinyl from the store, the sort of vinyl you might use to re-cover a set of kitchen chairs) and put the vinyl on the mattress under the bottom sheet. it doesn't crinkle like plastic but stops the urine getting into the mattress.

Also these days, those enzyme soakers are good at shifting stains and smells.

I also use plain vinegar as a splash-on before cold-washih, to kill almost all smells and stains from biological origin.

Marg