Don't know how to feel

[jimercat]

My husband, my son, my mother.

I'm really having a bad day.

I just can't do it all!!

It's not the actual caring, it's the d@%n paperwork.

I'm sick of having to prove my husband is "disabled." It just digs all of my emotions up again!

I'm sick of worrying about my son being able to go to the doctor.

I'm sick of my mother dwelling on petty crap, like a missed newspaper!

I just can't imagine how I will be down the road.

Sorry!

[kelly]

I know how you are feeling tonight! We all have those moments, when you just wonder how you can do it all. I bet you are already feeling a tiny bit better already. You wonder how you will do it.........we have no other choice. Our husbands and our children depend on us to be strong. I also hear what you are saying about people worrying about petty stuff. This disease sure puts what is "important" into perspective. When I hear people complain about normal daily frustrations...I actually chuckle now. I know consider a good day..when my husband can walk a few steps...or have some positive interactions with his kids. Paperwork is absolutely exhausting. Amazing thing about paperwork....it will be there in the morning. I try to set only one goal a week regarding insurance issues......health payments. Please just try to get through this day with some sanity...and remember tomorrow is a new day. Man....this is a challenging hand we have been dealt. I am here is you ever want to chat. fondly, KR

[gimpydad'slady]

CJ

I feel your pain!

My husband,

my son,

and I too, am tired of proving that my husband is disabled. My husband had to use is laptop to communicate his name, DOB, SSN, and our mailing address, oh and give permission for someone to talk to me about him,(I am all for HIPPA laws, but not sloppy follow thru) not once, but 5 times today over the phone today, because someone lost a POA for the 3rd time in 6 months! And people want to know why we are stressed!

Heck my mother-in-law has less gray hair than I do, and I am 20 years younger!:lol:

I hope someone, somewhere is trying to do just a little more to help, I am very grateful that there is legistration that is helping some of us...but there needs to be so much more. Especially our VETS....I won't go there....we would still be here this time tomorrow night reading what I rant about...

God Bless....Keep your chin up!

[jimercat]

I wail in silence as my husband smiles and laughs while I try to fit him with the "Hannibal" contraption as he calls it.

Would that I laugh in such circumstance, it's emotional lability, and I truly wonder what is going on in his mind.

He's not to blame!

Thanks for all your replies!

I'm just fed up tonight!

[trying to stay positive]

CJ, I'm sorry you are having a bad day. I can relate. (sigh) I have a continuous pile of paper work sitting on my kitchen counter. The never ending ins. co. hoops you have to jump through can be maddening and draining. Draining in more ways than one! And I too worry about ins. for my child. My husband's ins. will end once he goes from STD with his union to LTD.

The only suggestion I can offer is to try & deal with the paperwork crap early in the day before you get too worn out both physically and emotionally. I wish I had a magic wand to make this all go away for every one of the PALS & CALS. You hubby sounds like he has a sense of humor and I'm sure that helps. Wish I could think of something more helpful! You are not alone in this. If I can ever help, let me know.

[hopingforthebest]

Hi CJ

I feel better hearing you complain because you hardly ever complain!! I know it is mind boggling what we go through for our PALS in love! My heart goes to all you "younger" CALS that are raising young ones. Always praying for you guys!

My way of coping is not sleeping! That is not a joke. I get myself all crazy, like I did today about SS, (or should I say yesterday, as it is 2:30 a.m. and I am not asleep)
I need the rest but am wide awake!!

Will we ever be "normal" again? I doubt it. Maybe stronger, maybe wiser, but I don't think I will ever be my "old happy go lucky self that smiled at everyone, laughed at everything and enjoyed a great comedy on t.v. Now I wonder what everyone else is laughing about and why they are so happy.

Forgive me, I am suppose to cheer you up CJ. WE WILL GET THROUGH ALL THIS PAPERWORK AND ALL THE ANNOYING PEOPLE THAT HAVE NO CLUE WHAT WE GO THROUGH IN A 24 HOUR DAY! Stay strong honey for your son.

Love
Patty :-D

[duplinwino]

CJ, you offer so much to people here, I can only imagine what you do at home for your family!!! Vent away, lean on us, scream and bang on the keyboard. We'll understand :) It's very normal to feel what you're feeling. I find myself getting mad at Brian but then I feel guilty. It's very hard riding this roller coaster and I would love to hop off some times, but I want to be there for the good hills and turns too... if that makes sense.

Hugs to you.
Ashley

[Markbreton]

Oh how I can understand about the paperwork. If someone could convince all the govt. agencies to use one form that everyone could use....would be a miracle. Every time I need a letter from my wife's doctor for something I have to pay. One letter should suffice for all agencies!!!!
Mark

[jimercat]

Was finding comfort in the noise the BiPap machine makes last night, only to turn over and see the mask on top of my husband's head!!!:evil:

Boy did I lose it! I blessed him out good, but he said he was just taking a"break." Yeah, a very long "until the morning when I wake up break!"

Maybe I have a virus or something, as I was sick as a dog after mopping my Mom's floor today! Had to leave early. Took my son with me today and he was very sweet and told me he was sorry I was sick. I feel better now.

Guess I've let it all pile up in my head this week.

People are really getting on my nerves! Example: A lady called our house yesterday to ask a favor of my husband. In speaking with her she mentioned that she heard his siblings had given blood at Emory and wanted to know his blood type. I explained the blood was not for him, but research. That if he needed anything it would be a new diaphragm. If you haven't noticed by now I am a smarta$$:mrgreen:) She said, "OH, THEY'RE TRANSPLANTING DIAPHRAGMS NOW???":eek:

I knew y'all would understand. Guess I'm allowed to have a bad every once in a while!

thanks y'all!

[freddiesnetty]

Well I hope all is going well for yall.........I am over the hospital, Freddie is doing well but the village is full of idiots!!!! I have went to administration over some idiot respitory tech....He was an ass, left Freddies site dirty was rough with him and basically didn't give a s&^t!! I looked at Freddie and he was horrified, as he can not speak now...That is a whole other story....That hurts me soooooo bad. How can all this crap happen and people just DONT get it. Then today they decide to put him in a half ass wheelchair that doesn't even fit him as he is 6'3. Then some b.s. neck brace on him that doesn't work....Mind you he has a trach so he does not need to be having his head rolling around like a ball. All these horns go off and they act like no biggie, well when you don't know what they are they scare the crap out of you!! To them no worries!! .......I am here to tell you that I am scared shi@#less about this trach thing, but as usual I will put on my big girl panties and pull them up as always.....I am so scared......I thought that I could handle all of this, they have not given me any trach training yet so therefore I do not quite understand the mechanics of it. So when these idiots come in and start pulling on him I started FREAKING!! I will tell you that the work of struggling to feed him, the constant drooling is gone...........Now you just pour a can in and go about your business. Mentally is another deal......... I lied awake last nite praying that I would have the strength to do ALL this............I guess I fell asleep sometime early in the morning.But woke up early to come here......(hospital) I had to go home last night I have been here for 11 days. Freddie was very malnourished when we got here. He is finally adjusting to his peg....YEAH!!!!! was very worried about that , His Doctor just came in and said we are going home, I think the beginning of next week, I had some dental work scheduled here, I have been trying to get him to the dentist for awhile and most don't want to deal with "this" conditon. So heads up ask yalls docs about dentistry, if your dentist doesn't want to deal with "this" I know that I will get through this and especially with the support of my forum friends.....I hope that Lori is doing ok....I have been waiting for her to call me......I am so worried about her...........I love you all............Freddie says he will be on here soon typing ......I told him that yall would love to have him. Irma all is well, I don't know if I told you but Freddie had me bring the picture of Jesus to the hospital for him to look at. I have to go and wander....Hospital food sucks and is very EXPENSIVE! I think that I have spent all of Freddie's SSI check on food and parking......lol.......
Lots of Hugs for all!!!!
Netty

[crystalkk]

Cj,

Happy to hear you are feeling better.

You mentioned worrying about your son and being able to go to the drs. Do you have Chip in your state, I don't know if every state has it, I live in PA and I know NJ has it. It is Health Ins for children that don't qualify for medicaid Ins. or the family can't afford insurance. It is free or low cost according to your income. It covers everthing in PA and the co-pays are 5 dollars.

[Thee General]

Hello, I'm new to this support group. I have been reading a little what you caregivers have to say. And now I feel like I'm not the only one going through all this.

It seems like we do a lot of driving 2 to 5 hours away to go to the doctor for one thing and another. And yes will it ever end? And will all the paper work ever end? I put paper
work on the table and try to work on it one thing at a time. The phone calls that have to be made I do them one at a time and don't get stressed if I do I do it the next day.

I just do one day at a time and try not to worry how it will all end up.

I have no mother or kids to worry about just a lot of animals....:-D

I hope this will get on this thread, because I haven't been unable to do much.

[whimsy_1971]

CJ

your darn tooten you have a right to get frustated, upset, and angry. We are all here for you. You have been there for me on multiple occations and you sure know how to make me feel better. I sure hope we can return the favor.

:mrgreen:

[Icanmanz]

Hi netty, just read your post. Glad the trach and peg are done, but sad to hear about the jerks you are having problems with. Annette have you tried asking them for an instructions brochure, or a CD that will probably walk you through this? I know you have been through a lot, and Freddie, bless his heart. I pray that everything will be alright. Keep us posted. Oh, I am so happy to hear that he asked you to bring the pic of Jesus to the hospital. Do I have your email? Maybe you can give me a call, and give it to me then. Oh yeah, before I forget, did you ever get a hold of Vince's phone number? Thanks Annette, and God bless! Tell Freddie we love him. Love you, too!

Irma

[CindyM]

Hi CJ, Netty, Whimsy, Mark and every one of our CALS. We are all in a challenging journey and I am so glad we have each other. Don't let the paperwork and thoughtless jerks get to you. You are all doing the best you can under very trying circumstances, so cut yourselves some slack, CALS!

I hope everybody gets a little rest tonight! Hugs, Cindy

[kelly]

Netty,
I have been thinking about you and Freddy so much the last couple of days. You must have serioulsly wanted to scream at the people acting so insensitive to your hubby. I find myself extra protective of my husband. I am sure you are so proud of how brave he is being. I also loved how you said, you were putting your big girl panties on. I will remember that when dealing with tough situations. My thoughts and prayers are with you and your family. KR

[freddiesnetty]

Kelly,Thanks so much for all the kind words and prayers!!
I am worn out, I keep looking at Freddie and wondering what he has to be thinking?? He is setting off every alarm tonite, he hasn't been doing that......
So I wonder what that means....I hate myself sometimes for being so analytical.

Oh well, all is going and that is all I have to say about that.......Geez....
Another night at the spa....the one that has the worse pedicures..........lol...lol........

Freddie and I call the hospital the worse spa around!
Gotta laugh to keep from crying....
Netty

p.s.Everything is fine with Freddie.....I am just on a pity pot tonite!!

Netty

[fiddleplayer51]

CJ,
I'm so sorry for your frustration. The paperwork is unbelievable and having to prove over and over again that your PALS is disabled makes you just want to puke!
I didn't get on the computer earlier or I would have replied to your frustration sooner.

With us right now it's the BiPAP. We tried to go with a different company, but the company we tried to get started with has more stringent guidelines for criteria that must be met before they will even issue a BiPAP. Because my PALS FVC is >50% he does not qualify for BiPAP. :evil: We've been trying to get this BiPAP straightened out since May 21st!

So now we're stuck with the same company we've had so much trouble with. Now the issues are trying to get a full-face mask and trying to get a BiPAP that has both spontaneous and timed modes because my husband has had several episodes of 20 sec+ apnea.

I don't mean to go on and on about our troubles except to let you know that you're not alone. As you can see from everybody else's posts we just have to keep putting one foot in front of the other. I know that you do that, but are just having an especially frustrating time just now. I think you CALS with young children are in such a special category through all this trying to maintain some normalcy for your kids as well as meet your PALS' needs. My heart goes out to y'all! :sad:
I hate seeing you so down, CJ. You're such a help to others and I'm sorry if you've not been feeling well.

I'm glad you got some crap off your chest and that you were a smarta$$ to that lady who called you. I bet her little brain wheels are still spinning! :idea: :?: :confused:
I hope for better days ahead for you and your family. Thanks for all you do for others. I've learned alot from you.
Best wishes,
Jane

[freddiesnetty]

Well today is going well...........You know I never thought of it.....We have no small children, just ourselves and we have a cat. I have a grown room mate that helps out CONSTANTLY!! I feel so bad for yall that have children, I have never thought of that.....My heart goes out to yall, Freddie and I have 11 children between us...we are a blended family....I couldn't imagine having small children....I am so sorry that yall have to go through that, cause 7 of those children mentioned are mine. I had 5 girls and 2 boys. There was a time that I did have 5 in diapers at one time...I guess way back when I was young GOD had a special calling for me as well as the rest of us cals. Not everyjone can do what we do......So hang in there......I love and respect each and every one of us!!!
netty

[jimercat]

Thanks, I'm good.

[Jeannie]

Dear CJ
You are allowed to have a bad day, yell kick, scream, do what you need to. I have to say I am cracking up about the idiot with the diaphram!!!! Some people are so stupid!!. You are doing a great job. You are in my heart
In friendship
Jeannie

[jimercat]

I don't have it as bad as most! Thank you for your replies! I was so sick!

I'm very concerned for Lorie/Tim and Anette/Freddie and and anyone else that is in dire straights!

I've been remiss in replying to posts, as I haven't felt well. I will try to catch up.

[CindyM]

Glad you are feeling better, CJ. I always find it harder to cope, myself, if I am not feeling well.