OH my goodness...
Boy can I relate to those feelings!
I wish I could help you with this.
All I can do is tell you I understand.
You have a perfect RIGHT to feel this way.
It is OK to have a piety party once in awhile as long as we don't get stuck in it.
I love people who wave both arms as they are telling me I am "lucky" or my injury is not so bad...
As if they have any information or seen someone else with bpi.
All I can do is send you a hug...
Print out that new fact sheet from the SSA to bring with you to SSA.
Hugs to you
Kath (adult/robpi)
Why does everything have to be so difficult.
-
Kath
- Posts: 3242
- Joined: Mon Nov 18, 2002 4:11 pm
- Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
- Location: New York
Re: Why does everything have to be so difficult.
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
Re: Why does everything have to be so difficult.
I can sooooo understand. Right now I am trying to get our home ready to sell by myself (DH got a new position all the way in MN) while taking care of 5 kids. Took me 6 hours to paint 1 room. I am exhausted, hurting and working everyday trying to get everything done. But everytime I hear from DH's parents it is to ask why I haven't gotten everything done yet. Leaving me frustrated and hurt.
We can have our pity party together:)
We can have our pity party together:)
-
Kath
- Posts: 3242
- Joined: Mon Nov 18, 2002 4:11 pm
- Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
- Location: New York
Re: Why does everything have to be so difficult.
I personally like chocolate at my piety party.
My in-laws never lifted a hand to help me.
They also had no problem criticizing me.
You can't change people but you can change your reaction to them.
I feel for you because I am trying to get my house ready to sell to move to a smaller place.
Hopefully one with less work and property to take care of.
I use to love to garden but my hands, arms and back just won't do it anymore.
DH has to go to work so it's all up to me again!
Woman's work is never done!
I once packed to move while I was in labor and had a one year old... LOL...
I actually left for the hospital in the middle of packing a box.I came home from the hospital and finished packing that box... LOL...
I keep telling my DH I packed and unpacked both times we moved and this time he must do his share...
We shall see if that happens...
I hope your taking a break after painting a room.
Five kids seems to me to be enough work without painting and packing...
Kath (robpi/adult)
My in-laws never lifted a hand to help me.
They also had no problem criticizing me.
You can't change people but you can change your reaction to them.
I feel for you because I am trying to get my house ready to sell to move to a smaller place.
Hopefully one with less work and property to take care of.
I use to love to garden but my hands, arms and back just won't do it anymore.
DH has to go to work so it's all up to me again!
Woman's work is never done!
I once packed to move while I was in labor and had a one year old... LOL...
I actually left for the hospital in the middle of packing a box.I came home from the hospital and finished packing that box... LOL...
I keep telling my DH I packed and unpacked both times we moved and this time he must do his share...
We shall see if that happens...
I hope your taking a break after painting a room.
Five kids seems to me to be enough work without painting and packing...
Kath (robpi/adult)
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
-
Carolyn J
- Posts: 3424
- Joined: Tue Apr 06, 2004 1:22 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.
My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!
I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too. - Location: Tacoma WA
- Contact:
Re: Why does everything have to be so difficult.
My Dear BPI-Sisters,
THIS is NOT a Pity Party, BUT just "Life with OBPI" we MUST vent, it is heathy to vent. Did I say "LIfe With OBPI"??!!..LOL...This is your OBPI Mother speaking,LOL!
Also STRESS makes our pain worse. Isn't there a church group or a community volunteer org. that you can ask for help? PLEASE consider asking. I cannot believe, Kamren, that your in-laws don't "get" you & just join in to help! It makes me REALLY mad(oh yea, maybe they don't live close enough??I hope!)
I agree with Kath, CHOCHLATE(sp?)HELPS!..for everything.
Love & Hugs,
Carolyn J
THIS is NOT a Pity Party, BUT just "Life with OBPI" we MUST vent, it is heathy to vent. Did I say "LIfe With OBPI"??!!..LOL...This is your OBPI Mother speaking,LOL!
Also STRESS makes our pain worse. Isn't there a church group or a community volunteer org. that you can ask for help? PLEASE consider asking. I cannot believe, Kamren, that your in-laws don't "get" you & just join in to help! It makes me REALLY mad(oh yea, maybe they don't live close enough??I hope!)
I agree with Kath, CHOCHLATE(sp?)HELPS!..for everything.
Love & Hugs,
Carolyn J
Carolyn J
Adult LOBPI
Adult LOBPI
-
Carolyn J
- Posts: 3424
- Joined: Tue Apr 06, 2004 1:22 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.
My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!
I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too. - Location: Tacoma WA
- Contact:
Re: Why does everything have to be so difficult.
..."Sisters"...
PS..I'm praying for you & Vent all you want!
Love,Hugs & prayers,
Carolyn J
LOBPI,Age 67,..in case you didn't know)..LOL
PS..I'm praying for you & Vent all you want!
Love,Hugs & prayers,
Carolyn J
LOBPI,Age 67,..in case you didn't know)..LOL
Carolyn J
Adult LOBPI
Adult LOBPI
Re: Why does everything have to be so difficult.
The venting does help me...a lot! Thank goodness....NO the in-laws are pretty far right now, but we are moving about 4 hours away from them. Thankfully, I have my mother, who listens to me vent and cry all the time over my frustration. Of everyone I know, she is the only one who really knows how hard, and how painful it can be.
Luckily...I also found UBPN.
Luckily...I also found UBPN.
-
Kath
- Posts: 3242
- Joined: Mon Nov 18, 2002 4:11 pm
- Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
- Location: New York
Re: Why does everything have to be so difficult.
Kimberly
It's funny that you said your Mother understands.
I stopped talking about my arm and trying to explain my feelings and frustrations once my Mother died.
She died when I was 28 and after that our family never mentioned my arm again.
My mother really understood. I am glad you have your Mom to vent and talk to it helps.
My husband really understood so much more once I found UBPN. He tries very hard to understand and allows me to vent without trying to "fix it for me" now. He just listens and lets me get it out. He also understand my little quirks aka sensory issues much better.
Kath (adult/robpi)
It's funny that you said your Mother understands.
I stopped talking about my arm and trying to explain my feelings and frustrations once my Mother died.
She died when I was 28 and after that our family never mentioned my arm again.
My mother really understood. I am glad you have your Mom to vent and talk to it helps.
My husband really understood so much more once I found UBPN. He tries very hard to understand and allows me to vent without trying to "fix it for me" now. He just listens and lets me get it out. He also understand my little quirks aka sensory issues much better.
Kath (adult/robpi)
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
-
Carolyn J
- Posts: 3424
- Joined: Tue Apr 06, 2004 1:22 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.
My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!
I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too. - Location: Tacoma WA
- Contact:
Re: Why does everything have to be so difficult.
Kath,
That's why I named Ralph "Angel Ralph",b/c he listens and lets you get it out...(just 1 of my reasons..I have more!)
Hugs,
Carolyn J
That's why I named Ralph "Angel Ralph",b/c he listens and lets you get it out...(just 1 of my reasons..I have more!)
Hugs,
Carolyn J
Carolyn J
Adult LOBPI
Adult LOBPI
-
Carolyn J
- Posts: 3424
- Joined: Tue Apr 06, 2004 1:22 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.
My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!
I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too. - Location: Tacoma WA
- Contact:
Re: Why does everything have to be so difficult.
Bumping up for Christina. I'll find more topics on your question,Christina..."Veggiegoose" Traci is pregnant for the 1st time & we ALL[adults with BPI] chimed in on the topic of fears/relationships/pity-parties we all lived through trying to be "normal" and "fit in". I am sure otherswill chime in too after this busy weekend.Hang in here & there IS NO DUMB QUESTION!!!...keep reading.....
Hugs,
Carolyn J
Adult LOBPI, age 67 & proud of it!
Hugs,
Carolyn J
Adult LOBPI, age 67 & proud of it!
Carolyn J
Adult LOBPI
Adult LOBPI
-
brandonsmom
- Posts: 1401
- Joined: Mon Nov 22, 2004 4:43 pm
Re: Why does everything have to be so difficult.
Hey Carolyn,
It's "VEGGIEBUG" and "KISSYGOOSE" are you trying to make me loose my mind....LOL...too late, my son's BPI already made me lose that part....that's okay love him anyways. Have a great weekend, but had to give you a rough time.... HUGS.....Gayle mom to Brandon 7 1/2 ROBPI !
It's "VEGGIEBUG" and "KISSYGOOSE" are you trying to make me loose my mind....LOL...too late, my son's BPI already made me lose that part....that's okay love him anyways. Have a great weekend, but had to give you a rough time....
HUGS.....Gayle mom to Brandon 7 1/2 ROBPI !