United Brachial Plexus Network

Well another summer. 30 now for me ,chris bilateral erbs palsey. so i am a stay at home dad(don't get all mushy) my wife and have been together since our junoir year of high school.ahhh. but i am getting worse fast and i don't know how to play the wounded bird. the life style i have lived (single mom and 3 younger sisters) never allowed me to be disabled. my wife is a fast moving forensic scientist. with all this great stuff happining around me i still feel like the outsider. i sit around in pain most of the day waiting for my people to come home. my house is clean and dinner is on the table.
all the stuff i like to do i can't do much anymore. finding hobbies that doesn't take any shoulder movement is tuff lol huh. i can't throw a ball with my son. well i could go on

sorry i have issues
thx for posting i read them daily
chris

Hi Chris

I know your arms hurt but pat your self on the back. As a stay at home Mom I also sometimes felt on the outside looking in…. My job is now almost finished... well that job never finishes.

I want to share with you some advice from an older bpi stay at home parent. One of the best things I ever did for my children was to talk to them... all of the ball throwing... games.... etc... that I could not do I made for by being there when they needed me... and I am still there for them and they have learned over the years that they can count on me and trust me to be there when they need someone.

It is a daily grind and sometimes it gets boring and I would think even more so for the stay at home Dad's. Women tend to network more.
I live next door to a stay at home dad... he is always busy with three little boys but he does not have the social interaction that women have... he is a great role model for his boys however... The time has come for some social organizations to recognize the fact that there are more and more stay at home Dads and include them into many of the parenting activities.... or for communities to provide social interaction strictly geared to the needs of the stay at home Dads.
My daughter runs a parenting center in our church they have a few stay-at-home Dad's who drop into the meeting from time to time... see if you can find one in your area... People who stay home and take care of the children are often isolated.... trust me I know....

As far as issues, we all have them; I am just glad you are still here and post once in a while...

Feeling like the outsider? I had to think about this one. I always felt like an outsider because I was different yet I never expressed those feelings to anyone... I kept it inside... until I found the message boards and really started to address my arm and how I REALLY felt about it as opposed to how I was told to feel... (lucky to be alive, lucky it was "only" an arm) The more I educated my self on this injury the stronger I became. The more relief I sought the better I feel. I did not want to be in pain or on pain killers so I started a long regime of Physical Therapy ( of course I knew this was not going to help - BUT it did!) Aqua Therapy - again this was not going to change anything. Myofacial release...duh this is not going to work... and no matter how negative I thought I never said it out loud... thank goodness because I would have to eat every one of those words.....

Are you going for PT/ doing any exercise no matter how limited you are it is important to keep your range of motion....
Physical Therapy - choosing the right one who really tries to understand this injury is the only way to go......

OK... patting you on the back.... I do understand not being able to do things with the kids... but they don't really notice... all they understand and what’s most important in their lives is that you LOVE them and listen to them....

OK... mother Kath.... jumping down from her cheerleading perch..... LOL...

Kath

Chris,

(tough love below)

You sound no different than any other mom just trying to find a place in the world and in her life while taking care of her family and kids with the addition of your injury.

I'll tell you one thing I'd tell any other mom. Get out of the house. Do things for yourself. It's not so important to have a spotless house and a fantastic dinner on the table.

So you can't throw a ball? Kick one.

Feeling like an outsider? What's stopping you from coming INSIDE?

Join the rat race - you'll be much happier for it and the experts all say that distraction is the best medicine for pain.

Join a gym. Work out. Go swimming- get a floatie belt and do deep water walking/running. Take up photography - get a tripod and a remote squeeze button pusher (for lack of the word of what this is). Learn how to play an instrument with your feet. How about being a big brother/mentor for another child who has a physical disability?

Life is out there.
It's up to you to become part of it.

You were given a challenge.... you have two paths you can take. Which one to you choose?

Peace,
francine

...Chris....my post comes directly from my heart. I have lived in excruciating pain for years now and still have family and kids and home to take care of...so I know exactly where you're at. And this is the talk I have to have with myself all the time. So I passed on my own personal conversation I have with myself - with you.

Big hugs,
francine

Chris

How are you doing... Just thought I would bump this up and say Hi... especially since you told us you read....

Now how about a hi back...

Kath

HI chris,
My dad is a stay a thome dad too and sometimes he feels down too. But I have done it for 3 out my four kids......and he gets the last one....it's my turn for a reprive....although....he is not BPI, our son is. If you would like to correspond with him, he is willing to correspond back...our e-mail is gndc4kids@hotmail.com

Hi Chris,
How are you doing? What did you mean by getting worse? Is the condition with your arms getting worse, or your unhappiness at the daily grind? Did you receive the injury at birth? Are you getting good care from BPI specialists/therapists?
As far as the daily grind goes, I hope you can find a way to fulfill your needs: physical, intellectual, and/or spiritual. Being home is great, but it's not enough. I've always believed that in order to be a good wife, mother, daughter, or whatever relationship it is, we need to first take care of ourselves. I find that really important, or the rest will suffer. It's like the flight instructions on an airplane, when they tell you to get the oxygen to yourself before caring for a child!
My husband and I both work part-time so we can spend some time with our kids. They still have some daycare, but we enjoy it. However, as much as I love being a mother and being home, I crave intellectual stimulation and being able to use my "other" gifts. Could you find a way to work something for yourself into each day you are home, or every other day? Walking at the mall, volunteering, the zoo, your church, part-time work?
Hope you're feeling better soon.
Tina (Sophie's mom)

Chris

Bring this up to the top...
Tina posted she is a great one for you to talk to she is bi lateral too...

I have a question if you don't mind... Where you a very small baby like Tina...

Hope you don't mind... my asking.

Hope you yell back at us...
Kath

Oops - just wanted to clarify. I am a different Tina - I am a mother to an 18-mo old ROBPI, Sophie.
Maybe the other Tina can help (there does seem to be a lot of us Tina's here

Chris, hope you can post soon.

hi and thx for posting.
my pain has intensified in both shoulder blades and 1 out of 8 times i streighten either arm i get a sharp pain and burning sensation in my elbows. along with normal back pains from overuse because of how i have to move to pick anything up.i twitch alot sorta like the jitters in my fingers late in the day when my arm starts hurting. since most of my symtoms are in my left and althuogh my is affected mainly my elbow being crooked and weakness it has always got me through now it is also harder to lift and just hurts more often.it just doesn't look like it will make it for a hole lot longer. it is very depressing to look at my future if i can't do the things i've said a long time that my current condition is ok as long as it doesn't get worse well now it has and i'm looking at a world that is very hard to get around without alot of help.
as for activities i've done them all. i was a professional photographer, and group home superviser. i go fishen 1 or 2 days a week campen 4 or 5 times a year and do all the soccer mom stuff.
at the end of the day when it is all said and done for 3 or 4 hours i sit around hurting and twtchen. to start again the next day. is there a one handed fishen pole? and at some point as you all know when the normal soccer mom's kids grow up and go away temperarily she can go get a job. i can go get a job but i can't keep one after a while the figure out that "i'm not efficient enuff" and i get let go.
growing up i never realized i was this disabled yet in my adult life it has been proven many many times. the person i am is not the person in my soul, and so i must always say no when in my heart i want to say yes. although i am a stay at home dad and a very good one i would much rather be a guy working a lowly manual lobor job somewhere... anything

thx for all the posts
sorry i have issues
chris