OBPI - a big plus for shingles....

This board is for adults and teens to discuss issues relating to BPI since birth (OBPI).
6 posts • Page 1 of 1

OBPI - a big plus for shingles....

Postby Kath » Sun Jun 06, 2004 12:06 pm

I posted few weeks ago I thought I had a bug bite on my neck on the obpi side... well it was not normal or in a circle as most bug bites are... it looked like and upside down tear drop and boy was it painful.

Two doctors visits and 4 medications later I was told it is shingles. But the doctor was puzzled because the rash was not moving in the same fashion as most shingles wrapping around my neck. I tried to explain that I had little feeling on that side and my nerves were scrambled because of obpi and the fact that I was in such pain and felt the heat made it different from an ordinary bug bite. As usual no one was listening to me because there are no medical studies to support my crazy notion... so I was treated for bug bit and then on my second visit treated for shingles...

The was plus side of getting shingles on the bpi side for me. I am sure it was not as painful and it would have been much worse on the unaffected side of my body. I am sure the rash did not spread because the nerve's seem to be so disconnected... LOL... I knew something was wrong because I could feel the burning and tingling along with the pain... why won't they listen? Don't get me wrong it was so painful I was so frustrated and agitated with it.

I have no record of ever having the chicken pox so I could not compare sides... but I must have had them to get shingles. Does anyone remember having chicken pox on obpi side and how it felt? Dumb question but just curious.

all healed and my sense of humor is back
Kath
Kath robpi/adult

Kathleen Mallozzi
User avatar
Kath
 
Posts: 3232
Joined: Mon Nov 18, 2002 4:11 pm
Location: New York
Injury Description, Date, extent, surgical intervention etc: I am 70 and 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.

Re: OBPI - a big plus for shingles....

Postby Carolyn J » Sun Jun 06, 2004 2:02 pm

Kath, thanks for the information on shingles. I've had both Chicken pox and shingles and both were very painful and like you, no one listened to me.FYI, shingles is attributed to stress and I sure can vouch for that too; each time I had it I was under GREAT stress.It is good to start documenting every thing our bodies experience related to any type of pain in case we get lucky to get a study on adults with OBPI.
Carolyn
Carolyn J
Adult LOBPI
Carolyn J
 
Posts: 3400
Joined: Tue Apr 06, 2004 1:22 pm
Location: Tacoma WA
Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 75 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.

Re: OBPI - a big plus for shingles....

Postby Kath » Sun Jun 06, 2004 3:44 pm

Carolyn

This was my first experience with shingles and yes I have had quite a bit of stress...
I was surprised when I got shingles... I usually am very good at dealing with stress... I don't sleep... it could be worse, when I was younger I had Chronic Fatigue and it is from the Epstein Barr virus... they called it chronic mononucleosis ... but once you have the virus stress can trigger a relapse. I would rather have the shingles then be down for the count with Epstein Barr again. That is another virus that remains in your system.

Its important for us to share information here not only to support each other but to help us to gather information we need when we go to doctors. Armed with information we can each teach our own doctors and feel confident when we speak about it being common to obpi injured.


Kath
Kath robpi/adult

Kathleen Mallozzi
User avatar
Kath
 
Posts: 3232
Joined: Mon Nov 18, 2002 4:11 pm
Location: New York
Injury Description, Date, extent, surgical intervention etc: I am 70 and 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.

Re: OBPI - a big plus for shingles....

Postby Carolyn J » Tue Jun 08, 2004 10:34 am

Kath, thanks for sharing...we must continue to share everything our adult bodies experience regarding pain/discomfort et al, because as I am educating my MD, I believe our Drs are finally listening to us especially when we take them a copy of what we learn here on both the forums and Awareness link postings. ...I double copy & print and give one copy to my Md so we both know what we are dealing with and HOPEFULLY will get medicare to cover should I need it.
Have a great day,
Carolyn
Carolyn J
Adult LOBPI
Carolyn J
 
Posts: 3400
Joined: Tue Apr 06, 2004 1:22 pm
Location: Tacoma WA
Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 75 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.

Re: OBPI - a big plus for shingles....

Postby shan2321 » Wed Jun 09, 2004 9:02 am

When I had chicken pox when I was a kid... I don't remember vividly but from what my mom said, I had a few bumps on my obpi side, but definitely not as much as the rest of me.

Shannon
shan2321
 
Posts: 12
Joined: Mon Apr 26, 2004 4:25 pm

Re: OBPI - a big plus for shingles....

Postby Kath » Wed Jun 09, 2004 8:52 pm

Shannon

That is interesting. I have a friend who got shingles in the exact same spot that mine started and it spread all over her neck. Well, half way around her neck, up her face etc... that is what they thought mine would do but it remained contained to just a small area and it tingled etc on my head and was rash like but did not errupt.... I thought that was strange... I am glad I got it on this side because it hurts but people with full feeling I am sure are much worse off... one bonus for OBPI... LOL..
Kath
Kath robpi/adult

Kathleen Mallozzi
User avatar
Kath
 
Posts: 3232
Joined: Mon Nov 18, 2002 4:11 pm
Location: New York
Injury Description, Date, extent, surgical intervention etc: I am 70 and 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.


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