Today is one of those days that scare me about the future.

This board is for adults and teens to discuss issues relating to BPI since birth (OBPI).
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: Today is one of those days that scare me about the future.

Post by Carolyn J » Sat Mar 18, 2006 9:27 pm

Christina,
I am praying for you,for relief from pain,endurance & strengh until you get some help with your medical care. I "fell between the cracks" of Bureaucracy 1 time too and just "hung by my fingernails" like you are doing right now...Please update & Vent everyday to us who understand. It may help a little bit...
A BIG (((HUG)) from me to you,
Carolyn J
Carolyn J
Adult LOBPI

kamren
Posts: 262
Joined: Sun Feb 15, 2004 7:19 am

Re: Today is one of those days that scare me about the future.

Post by kamren » Sat Mar 18, 2006 10:51 pm

We all have those kind of days, I think. Hang in there, it will work out.

Beckyerin
Posts: 104
Joined: Wed Aug 17, 2005 8:06 pm

Re: Today is one of those days that scare me about the future.

Post by Beckyerin » Mon Mar 20, 2006 8:53 pm

It seems as if you are REALLY hurting. I have two ideas. The first one is to call the nearest BPI specialist and ask if they will see you despite not being able to pay. The worst they can say is no. I needed PT recently and am in school so paying 50 bucks in copay a week was too much. I asked my PT if I could pay less due to financial reasons and she got it down to five dollars a copay for each session. You never know unless you ask.
Also, where do you live? If you happen to be within driving distance of eastern pennsylvania I know that Dr. Nath is coming there the first week of may. He is seeing patient's for FREE. If you go to his website he lists contact info and you can see if you can get an appointment. Hope this helps!!!
Becky

kissygoose

Re: Today is one of those days that scare me about the future.

Post by kissygoose » Mon Mar 20, 2006 9:05 pm

Thanks for the ideas Becky. Francine emailed me and told me about the May clinic and I'm going to try my hardest to get out there (a bit of a challenge with 1 year old twins). I'm also in the process of appealing my insurances's decision to let me see Dr. Adelson. From my research he's the only specialists for adults in the state. I'm also planning on calling to see if they have payment plans and so forth.

I had to suck it up and call my pcp today because my unaffected hand is getting so bad I can't hardly hold a pen or twist the tops off the baby bottles. I don't know what he's going to tell me but I guess I'll find out tomorrow.

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: Today is one of those days that scare me about the future.

Post by Carolyn J » Tue Mar 21, 2006 10:30 am

Christina,
I am soo happy to read your posts...I will "step-up" the prayers for you to get to the Pennsylvania weekend with Dr. Nath. I'm going to go to Ohio to see him the 1st of April(my 1st time to see a BPI Specialist) & Boy! am I excited!! I will finally get some questions answered after living 67 yrs. with this!
I hope you have an easier day today.
(((HUGS)))
Carolyn J
LOBPI
Carolyn J
Adult LOBPI

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: Today is one of those days that scare me about the future.

Post by Kath » Tue Mar 21, 2006 12:00 pm

Christina

I know it's hard but please try to take care of yourself first. You can see a bpi specialist for Free and perhaps he will give you some guidance on what you need to be pain free while dealing with small children.

Please try to get there you have never been examined by a bpi specialist.

Kath (adult/robpi)
Kath robpi/adult

Kathleen Mallozzi

kissygoose

Re: Today is one of those days that scare me about the future.

Post by kissygoose » Tue Mar 21, 2006 12:43 pm

I saw my PCP today and I have carpel tunnel so I'm on anti-inflamitories and have a brace to wear at night.

I also gave him a copy of the latest outreach and talked to him about getting his help with getting the insurance to cover one of the specialists. He said he would do whatever is necessary to help me. He agrees that the carpel tunnel is a side effect of the OBPI but he doesn't know how to help me other than sending me to a specialist. He really wants to get me the best possible help.

I decided I am going to go to the clinic even if I have to go with the kids alone. I'm calling my drs today to start getting all of my records to take with me. I figure if I start now I might actually have them by May. :)

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: Today is one of those days that scare me about the future.

Post by Carolyn J » Tue Mar 21, 2006 4:35 pm

Dear "Kissy...",...I am SO Proud of you and what you have done for yourself the last few days!! I hope you give yourself alot of credit!I just bet there will be people at the PA Clinic in May that will help you with your children, should you have to take them with you. I am sure they'll be plenty of other children there to play with & keep them busy. It could turn into a mini-vacation"...sometimes it is all in how you can look at it. Please don't beat me up for that "pollyanna" statement...I don't mean to get preachy, honest!..LOL
Did I say I'm 'rootin' for ya'?
Carolyn J
Carolyn J
Adult LOBPI

User avatar
brandonsmom
Posts: 1401
Joined: Mon Nov 22, 2004 4:43 pm

Re: Today is one of those days that scare me about the future.

Post by brandonsmom » Tue Mar 21, 2006 7:33 pm

KISSYGOOSE,
I just logged on to type your reply and saw that you made a wise decision to make it to the clinic one way or the other.....I am not BPI but can tell you from having four kids....that if you don't take care of yourself no one else will. You have a long road ahead and you need to care for yourself.....find a friend to go, maybe a relative....but go. It is free and Dr. NAth is a great guy. There will be alot of people there that can help you with the twins I am sure. Maybe post something on here to find our who is going or maybe on the GENERAL BOARD. If I lived closer, I would help you with the twins....it something that you have to do FOR YOURSELF.
Gayle mom of Brando ROBPI (FEELING for you, because I know how us moms like to put our health on the back burner.....it is costing me......20 years later !!!)

admin
Site Admin
Posts: 19873
Joined: Mon Nov 16, 2009 9:59 pm

Re: Today is one of those days that scare me about the future.

Post by admin » Sun Apr 09, 2006 7:54 pm

Oh, WOW! I could have almost wrote this post, kissygoose. My daughter just turned one, and we had her party on the 25th. I am still crying about it. My back, neck, and shoulders were so sore, I got a migraine. And that was BEFORE the party started! I felt so awful, I could barely enjoy my daughter's big day. I know exactly how you feel, and I have been having these exact same thoughts and feelings more and more lately. I have just in the last few weeks realized I cannot do everything and I need to change my life. I kind of always pushed my injury to the back of my mind because I could do everything with my unaffected arm. The last few years I am now regretting not asking for help. I guess I never realized I was progressively making myself worse without even knowing it, and nobody ever told me. Now that I have a child, I regret every minute of trying to be "normal" and showing everyone "I can", because it has cost me the enjoyment of holding my sweet baby. I know how sad and scared you feel, but regardless of how depressed or beaten down or forgotten we feel, the Lord always knows, and He's the only one who can get us through anyway. With love.

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