husband is Really Scared

[susiestar]

husband hasn't seen many of the different things that jess is experiencing. He is either too busy in his own head or else he is off somewhere or he doesn't realize that what he is seeing is NOT exactly what she is saying. Jess will say that she is fine, doesn't want to get up when reality is that she can't because either she can't move her body or else her muscles are so tight that she can't straighten her legs. Jess and I have been having words about this because it isn't fair to her to feel she needs to hide, to me to have to try to get husband to understand what is going on when he doesn't see the problems, or on husband to be kept in the dark.

I did it to my dad too, when my health tanked in my teens. But my dad and husband are very different and husband keeps trying to convince Jess that she isn't "really" having these problems because he doesn't see it and the reg doctor didn't rx anything, so how can it be real?

Have any of you heard of torticolis? Where a person's head is pulled into a strange position and they CANNOT move it? Jess is having something similar to that, except it isn't just her head/neck. Her shoulders, arms, back, sometimes even her legs do this.

It hit while the 3 of us were talking, and then husband left the room to do something. Jess then asked me to pull her head straight and her shoulder forward and down. I called husband back in and had him help me. We firmly but gently push until she can straighten out. Leaving it bent results in sheer agony for a few hours after it stops and by massaging and moving her body to where it is more aligned she is in less pain at the time and far less pain the next day.

Now husband is freaking out. I understand, but I don't see how it will help. It is why I don't show anything like that to Jess - I am calm, admit what I don't know, work to figure out what will help her feel better and try to include some stupid jokes or something when she is in the middle of an episode that is lasting longer than ever before. NOT because i feel like joking, but because it keeps her calm. Panic is rarely useful, in my opinion.

I really wish that I could be the one who falls apart and doesn't cope with a problem. husband freaks, or he will emotionally run away and refuse to deal with it, etc.... I can't because if I do then the kids are on their own.

At least husband, yet again, sees that the problems are REAL and are NOT something that Jess is faking for sympathy. Cause you just can't fake this, not that I could figure out anyway.

 

[Liahona]

I hope he stops freaking out soon and comes to the realization you have. He isn't helping anyone. It would be better to get him on board and he can be a source of strength and help.

Seeing your child hurt is hard. The first time he sees it is probably hardest.

 

[joneshockey]

My baby, Emily who is now 6 months old has torticolis... she was born with it. Hers was caused by her being so low in the womb prior to delivery... her poor little head was stuck in 1 position for weeks and this caused her to have this condition. She has been in physical therapy now for the past 3 months and her range of motion and overall condition has improved tramendiously, but she still goes to therapy 1 time a week. Her torticolis also has caused her other problems as well - it made her head flat on one side due to her lack of neck mobility while she slept at night. She now wears a helmet to make her head round again. I strongly urge you to take her back to the dr. so that physical therapy can be ordered. The physical therapist will be able to show her & you exercises to work on at home that will help loosen those very tight muscles. I would be happy to answer any questions to might have, just PM me.

Cindy

 

[LittleDudesMom]

Perhaps Susie, this will get him on the same page. Maybe he just in one who needs to freak first.....

Sharon

 

[Hound dog]

Men usually freak when it's their little girls........and when it's medical........and you have both. But I know what you mean.

I know Jess is awfully young for it, and you might have done it already (memory is fuzzy this morning), but has she been checked for MS? Her symptoms remind me of 2 MS patients I had years back, both were very young when their symptoms started. Just thought I'd toss it out there as a possibility in case no one had thought of it yet.

((hugs))

 

[hearts and roses]

This may not be the easy child thing to say, but I think that because Moms are generally the main caregivers, we freak out on the inside and privately while on the outide we get through the most difficult moments and by nature try to help the patient (child) cope without alarming them.

Because H hasn't seen every little detail or been on every single Dr visit, and because Jess tries to hide the worser symptoms, he's simply unaware - whether by choice or not. So, now he's freaking out. I would allow him some time to freak out, but not too long. You will need to give him the proverbial smack in the face and say, "Okay, you've freaked out - now HELP me!" and get on with it.

I don't know why men are touted as being the stronger sex, I mean, really??? Women rule, imvho.

 

[keista]

Methinks husband is suffering from an irreversible condition. It's called the Y chromosome. Sounds like very typical male behavior to me. He knows he can't fix it, so he'll try ignoring it away until he's forced to face it. Then he freaks out because it is real and he still can't fix it.

((((HUGS))))

I also know the feeling of you wanting to be the one, who for once, gets to freak out and fall apart. For most women, marriage does not end up the equal partnership we expected it to be. Whether it's housework, child rearing, or emotional support - sometimes all three are off balance. Maybe when he's done with his "freak out", he'll realize how hard it's been on you and give you some time to yourself to process all this.

((((HUGS))))

 

[keista]

I don't know why men are touted as being the stronger sex, I mean, really??? Women rule, imvho

AMEN to that!

 

[InsaneCdn]

I don't know why men are touted as being the stronger sex, I mean, really??? Women rule, imvho.

Comparisons don't work anyway, but the best description I've seen yet is...

Men are like an acute illness - they can handle massive loads in short bursts.
Women are like a chronic illness - they handle less load, but it never stops.

 

[buddy]

Your poor girl. Must be scary along with the discomfort. Hopefully once (if) husband settles down he will actually maybe go with you....I think two adults confronting a dr and saying this is really not right...might help????? Or maybe he would just muddle things up.


I hope you find answers....sounds just awful.

 

[susiestar]

Thanks. He will get past the freak out, but probably won't ever be much help in a dr appointment. I have to either send a list wtih him or go to his dr appts just like iwth a child if I want him to get anything addressed at the doctor. He could be bleeding out from a wound but would tell the doctor he is "fine" and everything is "okay". I got over the annoyance with that one yrs ago and he does things to make up for me having to take charge of his health as well as the kids. No partnership is 50/50, and we have a pretty good routine for most things (20 yrs either does that or you hate each other, lol).

He problem won't actually face everything she is going through. MOstly because he can't fix it so he can't deal. He still hasn't read book one on aspergers, much less any other problem the kdis have. But he does the school stuff, the sports teams, and other activities like Odyssey of the Mind, etc.....

He WILL now stop griping because she doesn't do everything he wants her to, and he never sees her do schoolwork. She sleeps most of the day and is up all night because the pain is a lot worse at night. I now am mostly on "the vampire shift" because when she is hurting she wants her Mommy - can't blame her for that. She doesn't go overboard with it, just is needier at night. So that is when seh does her schoolwork. I don't care as long as she is learning, Know what I mean??

I have wondered about MS, couldn't get a doctor to even think about it before this.

Cindy, the neuro does know about this. He doesn't want to do a whole lot until he gets the extended EEG, which is in 11 days. I am sure he will diagnosis whatever is needed, he is very responsive but won't deal with more than 1 or maybe 2 changes at a time. Means it takes longer to get results but you know what is working and what isn't. So we will give him some time. Meantime, she does stretching and range-of motion exercises several times a day. I am sure something else is needed, something more specific, but I am willing to wait until after we get the eeg done to take that step as the eeg is so close (and is at least 4 days in the hospital, probably 5 and will probably give them a good view of all the symptoms and what is/isn't seizure related, Know what I mean??

Thanks all. It is hard when husband freaks out. He immediately goes to doom and gloom and life hoovers and it is all because we don't have any $$ etc.... I keep reminding him that she is getting better care on the state kids' medicaid than we got with private insurance, so it isn't all bad, and the sun still shines and the flowers still bloom etc.....

I just don't know how he can refuse to see the problems for so long and then freak out so much when he does see one. Must be the testosterone. Momma always said it killed brain cells.