New Memeber

[Guest guest]

Audrey and group;

Well hello Audrey,,,Welcome to our humble group,,, I hope you enjoy

as much as I do....We are all ready to help in any way we can...I

understand hon...I was at my wits end till I joined this wonderful

group....

Om goodnes 10 years is way to long to suffer...Yes I have been told

its all in my head also...How dare them say that without evein doing

any test... Sounds like a few know it all whom knows nothing....I

was stuffed with pain meds also....What is remarkable I was on high

doses of morphine and didnt become addicted...

I have a wonderful primary doctor and rheumy now...Wow you sound

like a fighter sweetheart..... We have a lot of fighters

here...Thats what makes this group so great...Not amongest each

other haaaaaaaaaaa....

Wow you got a lot on your plate sweetheart.... My plate is full

also...My doctor is working on these awful headaches I have now...He

thinks they are from my meds or my c-pap....So I am getting another

sleep study done....I am on plaqunil , sulfazaline and humira

injections,,,,lot other meds for diff conditions....THe humira was

the best for my RA pain...Started that severl weeks ago....

I do appreciate the paragraphs,,, I see double with long post that

has no paragraphs haaaaaaaaaa,,,,My neck kills me...One of our

support group memembers told me of some great neck exercises. I

think it was Tawny or Doreen....The exercises help a lot...But it

don't take it all away...If interested let me know and I will

explain them to ya....I hope they can find out what is causing your

neck pain as mine also...

Don't worry you wasn't rambling,,,I find your post just fine...Our

moderator said that long posts are welcome....

I had to change my diet a lot due to Diabetes type 2 and a weight

problem...I love fresh fruits and veggies...I love about all foods

so I don't have a problem with changes,,,,only problem I have is

affording the right foods....I am on a limited income....My husband

is layed off for 3 years....He has been working for Temps...Right

now he is out of work even with the temps...Hopeing and praying for

many more pain free days for all of us... God bless and take care

kind gentle hugs everyone

Clora

> Good Morning Everyone,

>

> My name is Audrey and I am from Wisconsin. I joined the group in

the

> hopes that I may find further resources to assist me. I am at my

wits

>

[Guest guest]

Audrey,

Welcome! You will find lots of information here, and people who truly

care. We all are different, and so our the methods on how to deal with

chronic pain. We just want relief, so we are still reaching for the

same thing. Good luck, Tawny

>

> Good Morning Everyone,

>

> My name is Audrey and I am from Wisconsin. I joined the group in the

> hopes that I may find further resources to assist me. I am at my wits

> end! A little history about myself. I have been suffering for over

> ten years, going from doctor to doctor, being told by several doctors

> that my problem were psychosomatic, without even ordering proper

> diagnostic test. They all just wanted to stuff me full of pain meds,

> anxiety or depression meds and shove me out the door. I had to fight

> with my last GP just to see a Rheumatologist because he refused to

> let me have an MRI done and fill out papers for my pending

> disability. Which I did finally when my appeal this past December.

>

> In the past two years I was finally able to be diagnosed by both a

> rheumatologist and a neurologist. I have been diagnosed with

> fibromyalgia, chronic pain syndrome, severe scoliosis in the low

> back, stenosis, bulging disc and osteophyte at L5, degenerative disc

> disease, chronic fatigue, SI joint pain, sciatica, several types of

> arthritis and the list goes on.

>

> Over the last month or so, I have had increased pain on a daily

> basis, putting me right over the top. I had another series of x-rays

> and an MRI this past week. I am being referred back to my neurologist

> because it now appears that I have four pinched nerves in my neck.

>

> I am hyper-sensitive to most medications and don't tolerate pain meds

> at all. I had been relying on over OTC meds with little relief and

> they are now causing stomach problems. I do take Librium as needed as

> the pain level sometimes brings on anxiety attacks. I do tend to go

> the holistic route to self treat. I take sea salt baths with various

> oils. I supplement with vitamins and minerals. I try to eat a healthy

> diet. I am also very much intune with nature, visualizations and

> meditation. But lately, my pain level has been so high, that I find

> little relief in that as well.

>

> I am so sorry to has rambled on so. I truly feel everyone's pain and

> struggle. I am so happy to have found a group of people who I can

> relate to.

>

> Dreaming of a less pain filled day,

>

> Audrey

>

> " Reach high, for stars lie hidden

> in your soul. Dream deep,

> for every dream precedes the goal. "

> Pamela Vaull Starr quote

>

[Guest guest]

Audrey,

So nice to meet you. Everyone here has been caring and

understanding.

I pray there will be a solution for your neck. I had surgery in May

for 2 herniated disk and spinal stenosis. I have the problems with

pain meds also. Seems they only add extreme nausea and vomiting to

my pain. For months now my pain has been tolerable though. Just 5mg

of prednisone is a big help.

I hope you have a better day tomorrow.

Shirley

>

> Good Morning Everyone,

>

> My name is Audrey and I am from Wisconsin. I joined the group in

the

> hopes that I may find further resources to assist me. I am at my

wits

> end! A little history about myself. I have been suffering for over

> ten years, going from doctor to doctor, being told by several

doctors

> that my problem were psychosomatic, without even ordering proper

> diagnostic test. They all just wanted to stuff me full of pain

meds,

> anxiety or depression meds and shove me out the door. I had to

fight

> with my last GP just to see a Rheumatologist because he refused to

> let me have an MRI done and fill out papers for my pending

> disability. Which I did finally when my appeal this past December.

>

> In the past two years I was finally able to be diagnosed by both a

> rheumatologist and a neurologist. I have been diagnosed with

> fibromyalgia, chronic pain syndrome, severe scoliosis in the low

> back, stenosis, bulging disc and osteophyte at L5, degenerative

disc

> disease, chronic fatigue, SI joint pain, sciatica, several types

of

> arthritis and the list goes on.

>

> Over the last month or so, I have had increased pain on a daily

> basis, putting me right over the top. I had another series of x-

rays

> and an MRI this past week. I am being referred back to my

neurologist

> because it now appears that I have four pinched nerves in my neck.

>

> I am hyper-sensitive to most medications and don't tolerate pain

meds

> at all. I had been relying on over OTC meds with little relief and

> they are now causing stomach problems. I do take Librium as needed

as

> the pain level sometimes brings on anxiety attacks. I do tend to

go

> the holistic route to self treat. I take sea salt baths with

various

> oils. I supplement with vitamins and minerals. I try to eat a

healthy

> diet. I am also very much intune with nature, visualizations and

> meditation. But lately, my pain level has been so high, that I

find

> little relief in that as well.

>

> I am so sorry to has rambled on so. I truly feel everyone's pain

and

> struggle. I am so happy to have found a group of people who I can

> relate to.

>

> Dreaming of a less pain filled day,

>

> Audrey

>

> " Reach high, for stars lie hidden

> in your soul. Dream deep,

> for every dream precedes the goal. "

> Pamela Vaull Starr quote

>

[Guest guest]

Welcome to the group Audrey. This is a great bunch of people. I hope you

can find the help you need.

R

--------------------------------------------------

From: " adallen51 " <adallen07@...>

Sent: Sunday, September 28, 2008 12:12 PM

< >

Subject: [ ] New Memeber

Good Morning Everyone,

In the past two years I was finally able to be diagnosed by both a

rheumatologist and a neurologist. I have been diagnosed with

fibromyalgia, chronic pain syndrome, severe scoliosis in the low

back, stenosis, bulging disc and osteophyte at L5, degenerative disc

disease, chronic fatigue, SI joint pain, sciatica, several types of

arthritis and the list goes on.

I am hyper-sensitive to most medications and don't tolerate pain meds

at all. I had been relying on over OTC meds with little relief and

they are now causing stomach problems. I do take Librium as needed as

the pain level sometimes brings on anxiety attacks. I do tend to go

the holistic route to self treat. I take sea salt baths with various

oils. I supplement with vitamins and minerals. I try to eat a healthy

diet. I am also very much intune with nature, visualizations and

meditation. But lately, my pain level has been so high, that I find

little relief in that as well.

[Guest guest]

Good Morning Shirley,

Thank you for the warm welcome. I am not sure what will happen as I can't get an

appointment with the neurologist until October 30th. But what I found amusing

was that a chiro found the nerve problems with this scanner devise even before I

had the MRI. This was at a chance meeting at a street fair. He thinks that he

can help me. Surgery is a last resort. Did your surgery lessen your pain level?

When I take even the lowest dosage of pain meds, they knock me for a loop.

To a pain free day,

Audrey

http://clk.atdmt.com/MRT/go/msnnkwxp1020093182mrt/direct/01/

[Guest guest]

Good Morning Clora,

Thank you for the very warm welcome. And yes, I am a fighter....I am a misplaced

" Dam Stubborn Yankee " originally from Massachusetts. I would be very interested

in the neck exercises that you mentioned. At this point, I am willing to try

just about anything. I am on disability, so I know all too well about the

financial struggle, but I make due.

Wishing all a pain free day,

Audrey

http://clk.atdmt.com/MRT/go/msnnkwxp1020093175mrt/direct/01/

[Guest guest]

Good Morning Tawny,

Thank you for the very warm welcome. I would be most interested in different

ways that anyone has tried to relieve some of the pain. One thing that I do is

fill a tub with water as hot as I can take. To this I add about 1/2 cup sea

salt, a few drops sage oil and Eucalyptus oil. The salt helps to draw out toxins

in your system. The oils help to reduce the pain somewhat, plus clear your

sinuses at the same time. I also listen to very calming music, close my eyes and

just chill.

Wishing all a pain free day,

Audrey

http://clk.atdmt.com/MRT/go/msnnkwxp1020093175mrt/direct/01/

[Guest guest]

Good Morning ,

Thank you for the very warm welcome.

Wishing you a pain free day,

Audrey

http://windowslive.com/connect/post/jamiethomson.spaces.live.com-Blog-cns!550F68\

1DAD532637!5295.entry?ocid=TXT_TAGLM_WL_domore_092008

[Guest guest]

Welcome Audrey. I pray you find the answers you are looking for. I am

so sorry that you have had to deal with so many butt heads before

finding a doctor that would take you seriously. Its sad to realize

just how many there are out there like that. You will find a lot of

information that is shared on this site and I have been blessed to

have been able to have some of my anxiety issues resolved just knowing

that we have options and we have rights. The people here are wonderful.

As far as your medications go, it sounds like you need to get back in

touch with your Rheumy ASAP and get started on something to try and

stop the progression of your RA. Please know that it sometimes takes a

combination of medications to get things under control, so please be

patient and keep in close contact with your Rheumy. There is hope and

several people on here have been blessed to have this disease go into

remission for them.

I am still in the " discovery " phase (for lack of a better word). I

take Sulfasalazine, Neurontin, Methotrexate, Skelaxin, Xanax, Celexa

and Oxycodone for the pain. I am taking part in a clinical study for

Tocilizumab, but I'm afraid that I'm in the 33% who are getting the

placebo because after three months, I'm not feeling any better. My

main problem is that I don't have health insurance, so the meds that

have helped so many go into remission are out of my price range. I am

going to talk to my Rheumy about an Antibiotic Protocol that one of

the ladies here talked about. Info for that is at www.roadback.org .

I don't know if I'm a candidate for that or not, but at this point I

am willing to try anything.

Please don't apologize for the ramble. As you will see, we are all

guilty of it at one time or another, but that's what this group is all

about. Helping and supporting each other as well as just venting at times.

Best of luck to you, Audrey. God Bless..........Doreen

>

> Good Morning Everyone,

>

> My name is Audrey and I am from Wisconsin. I joined the group in

> the hopes that I may find further resources to assist me. I am at

> my wits end! A little history about myself. I have been suffering

> for over ten years, going from doctor to doctor, being told by

> several doctors that my problem were psychosomatic, without even

> ordering proper diagnostic test. They all just wanted to stuff me

> full of pain meds, anxiety or depression meds and shove me out the

> door. I had to fight with my last GP just to see a Rheumatologist

> because he refused to let me have an MRI done and fill out papers

> for my pending disability. Which I did finally when my appeal this

> past December.

>

> In the past two years I was finally able to be diagnosed by both a

> rheumatologist and a neurologist. I have been diagnosed with

> fibromyalgia, chronic pain syndrome, severe scoliosis in the low

> back, stenosis, bulging disc and osteophyte at L5, degenerative

> disc disease, chronic fatigue, SI joint pain, sciatica, several

> types of arthritis and the list goes on.

>

> Over the last month or so, I have had increased pain on a daily

> basis, putting me right over the top. I had another series of

> x-rays and an MRI this past week. I am being referred back to my

> neurologist because it now appears that I have four pinched nerves

> in my neck.

>

> I am hyper-sensitive to most medications and don't tolerate pain

> meds at all. I had been relying on over OTC meds with little relief

> and they are now causing stomach problems. I do take Librium as

> needed as the pain level sometimes brings on anxiety attacks. I do

> tend to go the holistic route to self treat. I take sea salt baths

> with various oils. I supplement with vitamins and minerals. I try

> to eat a healthy diet. I am also very much intune with nature,

> visualizations and meditation. But lately, my pain level has been

> so high, that I find little relief in that as well.

>

> I am so sorry to has rambled on so. I truly feel everyone's pain

> and struggle. I am so happy to have found a group of people who I

> can relate to.

>

> Dreaming of a less pain filled day,

>

> Audrey

[Guest guest]

Audrey,

I also like hot baths, it helps so much. Where do you find all the

ingredients for the bath? I do have sinus problems, so will enjoy

it, I'm sure. Its hard to chill around here, but I will sure give it

a try. I have been in so much pain lately, I'm not able to do much.

I'm having heel problems, so not even able to walk very well, which

totally sucks. Glad your here, you have some great ideas, Tawny

>

> Good Morning Tawny,

>

> Thank you for the very warm welcome. I would be most interested in

different ways that anyone has tried to relieve some of the pain. One

thing that I do is fill a tub with water as hot as I can take. To

this I add about 1/2 cup sea salt, a few drops sage oil and

Eucalyptus oil. The salt helps to draw out toxins in your system. The

oils help to reduce the pain somewhat, plus clear your sinuses at the

same time. I also listen to very calming music, close my eyes and

just chill.

>

> Wishing all a pain free day,

>

> Audrey

>

>

>

[Guest guest]

Audrey,

Before my neuro-surgeon did anything, he told me it may take a while

becuase nerves heal so slowly. I told him I wanted any kind of

relief that I could obtain. I am very thankful to say that I do not

wake up at night with my shoulders aching. I guess it could start

back, but since May it has been wonderful.

I think we are all suffering from multiple problems and I was very

happy that there was one I could do something about. I also have a

herniated disk in my lower lumbar. That one will stay. I have only

heard nightmares about surgery there.

I went for a second opinion to a neurologist before surgery. I asked

if I could continue to see my chiro when my lower back gives me

trouble and he said yes. I can never let him adjust my neck again

though. I have tried physical therapy for my lumbar area, but it

didn't help. The chiropractor is the only relief that helps,

excluding large doses of steroids, which I hate.

Sorry to be so long,

Shirley

--- In , Audrey <adallen07@...>

wrote:

>

> Good Morning Shirley,

>

> Thank you for the warm welcome. I am not sure what will happen as

I can't get an appointment with the neurologist until October 30th.

But what I found amusing was that a chiro found the nerve problems

with this scanner devise even before I had the MRI. This was at a

chance meeting at a street fair. He thinks that he can help me.

Surgery is a last resort. Did your surgery lessen your pain level?

When I take even the lowest dosage of pain meds, they knock me for a

loop.

>

> To a pain free day,

> Audrey

>

>

>

>

> http://clk.atdmt.com/MRT/go/msnnkwxp1020093182mrt/direct/01/

>

>

[Guest guest]

Hello, I am recently a new number. I have blepharophimosis, I am now 19.. and

actually a mother of a 4 month old. Please dont judge.. But its really made me

question who I am .. due to the fact that my daughter was not born with

blepharophimosis like I was. Ive just been looking for information .. and a

little surport. Being this way.. sort of makes me feel that Im nothing like

everyone else.. and im feeling really out of place from everyone.

Im having a hard time ajusting to the whole prospect of being a mom in this

condition..

Ive had 2 surgerys when I was a child .. I believe that I was surposed to have a

3rd.. but it never seemed to happen. I actually LOVE my eyes.. the only part I

dont seem to love is the fact that it would look so much better if the skin was

pinched inbetween my nose to make them appear closer together .. and to make the

inner corner whiteness appear. Would the 3rd surgery accomplish that ?.. and are

there any risks in taking the surgery ?

And also are there any moms out theree who have blepharophismosis?

anything really would help ..

thankss .

[Guest guest]

Thank you, I feel very blessed.

Do you have BLEPH ?

blepharophimosis From: nicki.venable@...Date: Mon, 5 Apr 2010 08:04:25 -0400Subject: RE: blepharophimosis New Memeber

New Member:You will never be judged by me... I just want to say welcome and anything that I can provide you with I will. Congrats on being a mother because there are females with Bleph that cannot conceive because of POF. You are blessed!!!! I hope you find all the answers you seek!!!!Nicki -----Original Message-----From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of felicia.macneilSent: Saturday, April 03, 2010 11:18 PMblepharophimosis Subject: blepharophimosis New MemeberHello, I am recently a new number. I have blepharophimosis, I am now 19.. and actually a mother of a 4 month old. Please dont judge.. But its really made me question who I am .. due to the fact that my daughter was not born with blepharophimosis like I was. Ive just been looking for information .. and a little surport. Being this way.. sort of makes me feel that Im nothing like everyone else.. and im feeling really out of place from everyone.Im having a hard time ajusting to the whole prospect of being a mom in this condition.. Ive had 2 surgerys when I was a child .. I believe that I was surposed to have a 3rd.. but it never seemed to happen. I actually LOVE my eyes.. the only part I dont seem to love is the fact that it would look so much better if the skin was pinched inbetween my nose to make them appear closer together .. and to make the inner corner whiteness appear. Would the 3rd surgery accomplish that ?.. and are there any risks in taking the surgery ? And also are there any moms out theree who have blepharophismosis?anything really would help .. thankss .

Live connected. Get Hotmail Messenger for mobile.

[Guest guest]

Hi Felicia, I'm Ann, and I'm in Denver, Colorado USA. I'm a proud mommy to 3

gorgeous kids, the youngest of which has BPES. It doesn't run in our family, my

daughter is the first. While I don't have BPES myself, I was a mother at a young

age. My son was born when I was 18. While I can't help you out with most of your

BPES questions (we're still learning about it ourselves, my youngest is only 2

1/2), I can be there for you if you ever just need to vent about being a mom so

young. I was a single mom, and I know how hard that is alone, and yet you have

so much more on your plate. Wish I could help more. Congrats on being able to

have children, as so many can't.

Please feel free to email me anytime. I have pics of my youngest in the photo

section. You can find them under Catalina. I haven't updated them since her last

surgery 2 months ago, but I will get to that later today.

Always,

Ann

P.S. Where are you located? Don't need an address, just a general area. It helps

so that if there are people in your area that are on here, they can recommend

docs to you who can better answer your questions than we here can.

--- In blepharophimosis , " felicia.macneil " <felicia.macneil@...>

wrote:

>

> Hello, I am recently a new number. I have blepharophimosis, I am now 19.. and

actually a mother of a 4 month old. Please dont judge.. But its really made me

question who I am .. due to the fact that my daughter was not born with

blepharophimosis like I was. Ive just been looking for information .. and a

little surport. Being this way.. sort of makes me feel that Im nothing like

everyone else.. and im feeling really out of place from everyone.

>

> Im having a hard time ajusting to the whole prospect of being a mom in this

condition..

>

> Ive had 2 surgerys when I was a child .. I believe that I was surposed to have

a 3rd.. but it never seemed to happen. I actually LOVE my eyes.. the only part I

dont seem to love is the fact that it would look so much better if the skin was

pinched inbetween my nose to make them appear closer together .. and to make the

inner corner whiteness appear. Would the 3rd surgery accomplish that ?.. and are

there any risks in taking the surgery ?

>

> And also are there any moms out theree who have blepharophismosis?

>

> anything really would help ..

>

> thankss .

>

[Guest guest]

Hello,

My father as well also has bpes..

there is a family history of it. my grandma, 2 uncles, and 2 children, and myself.

I do have facebook, what is your search name ?

I'll sha'll search you and send you an invitation. Im from Nova scotia, Canada.

blepharophimosis From: samus_aran76@...Date: Tue, 6 Apr 2010 00:04:33 -0700Subject: Re: blepharophimosis New Memeber

Hi felicia, welcome to the group. My name is matt. I am 34. My father, my 4 yr old savannah, my ten month old ben, and i have bpes. My heart goes out to you. To answer your question about the skin between your eyes: yes you can have surgery to pull it in and expose the whites of your eyes. My 4 yr old just last month had three procedures done all in the same day. Do you have facebook? All of the photos of her are there. I told my wife, who doesn t have bpes, about your email and she felt for you and offered her email address if you ever needed to talk. Her email : neenee2285 where are you from? Is there a family history of bpes? Hope to hear from you. Matt demartileOn Sat Apr 3rd, 2010 8:17 PM PDT felicia.macneil wrote:>Hello, I am recently a new number. I have blepharophimosis, I am now 19.. and actually a mother of a 4 month old. Please dont judge.. But its really made me question who I am .. due to the fact that my daughter was not born with blepharophimosis like I was. Ive just been looking for information .. and a little surport. Being this way.. sort of makes me feel that Im nothing like everyone else.. and im feeling really out of place from everyone.>>Im having a hard time ajusting to the whole prospect of being a mom in this condition.. >>Ive had 2 surgerys when I was a child .. I believe that I was surposed to have a 3rd.. but it never seemed to happen. I actually LOVE my eyes.. the only part I dont seem to love is the fact that it would look so much better if the skin was pinched inbetween my nose to make them appear closer together .. and to make the inner corner whiteness appear. Would the 3rd surgery accomplish that ?.. and are there any risks in taking the surgery ? >>And also are there any moms out theree who have blepharophismosis?>>anything really would help .. >>thankss . >

Got a phone? Get Hotmail Messenger for mobile!

[Guest guest]

Hi,

I live in Nova Scotia Canada. Come to find out I've only recieved 2 surgerys.

Do you happen to know anything about fertility within women with BPES..

Since I concieved one child, does it mean I can concieve more?

I would like to have a few children in my lifetime..

And I am just wondering if TYPE I and TYPE 2 can be combined, just making it harder for some

to concieve, rather than not being able to concieve at all..

Because its not like I was trying to get pregnant,

but there was ocasional unprotected sex with the same partner for quite a awhile..

Am just wondering if not being pregnant before was due to fertility problems.

blepharophimosis From: joyceaibitoye@...Date: Mon, 5 Apr 2010 07:32:00 -0400Subject: Re: blepharophimosis New Memeber

Hi Felicia

My name is Joyce. I have 2 daughters with BPES 16 and 12 years old. Live in London UK.

Questions about the suitability of surgery depends largely on individual cases, results will depend on the facial features and other things pertaining to the person. Both my girls have had surgery. Mayowa 16 years old has had 3 and Tina has had 2 surgeries. The results have varied widely. Tina who had only 2 seemed to have better results.

The other issue is that of fertility. Some type of BPES prevent women from being able to conceive. Congratulations on the birth of your child.

A good idea is to find people in the area where you are situated, as they may know of doctors that can answer your questions also read up on some of the earlier post and finally look up some of the before/after pictures.

I hope this helps

Happy Easter

Joyce

London UK

Live connected. Get Hotmail Messenger for mobile.

[Guest guest]

Hello,

I would recommend getting the genetic testing done to see if shes either TYPE 1 or TYPE 2.. I myself am requesting to get the testing done. Even though I have concieve a child, I want to know if im able to concieve others in the future. Also for the surgery for your daughter.. I never had a say in weither or not I wanted my surgerys done.. my parents left the 3rd surgery up to me. Now that im older, I've grown to accept it, and free no need for the 3rd procedure. After researching some before and after photos, the 3rd surgery can actually make it look worst.. I would wait until she is older, but make sure when shes older that if she does decide to go through with it, that its for the right reasons. That she wants it, not because she feels it will makes others feel more attractive to her.

blepharophimosis From: nicki.venable@...Date: Mon, 5 Apr 2010 10:27:09 -0400Subject: RE: blepharophimosis New Memeber

Felcia,

No I do not have bleph. My daughter Avery is the first in our family. She is almost 4years old and will be scheduled for her final surgery this year. She too has the wide nasal bridge. My husband and I do not know if we should schedule her for a surgery to narrow the distance or wait until she is about your age and see if she wants the surgery (we will pay for whatever she wants done). We are also not sure if we want to do the genetic testing to see if she is a Type 1 or Type 2. Type 1 will mean possible difficulty conceiving a child. We are clueless as what to do. I also have a 7 month old boy and he does not have Bleph and I am due in July of this year with another boy…

Nicki Venable Section ChiefCommunity Development County Community Corrections201 West Superior StreetFort Wayne, Indiana 46802(260) 449-7252This message contains confidential information. This email and any attachment may contain protected health information as defined by HIPPA (45 CFR 164.502), state and federal confidentiality rules (42 CFR Part 2) and IC 16-39. The information in this email is intended only for the use of the named addressee, individual(s) or entity named above. The federal rules prohibit you from making any further disclosure of this information unless otherwise permitted by law. If you are not the intended recipient, you are hereby notified that any disclosure, copying, distribution or the taking of any action in reliance on the contents of this electronic information is strictly prohibited. Please notify the sender immediately if you have received this by mistake, and delete this e-mail from your system. E-mail transmission cannot be guaranteed to be secure or error-free as information could be intercepted, corrupted, lost, destroyed, arrive late or incomplete, or contain viruses. The sender therefore does not accept liability for any errors or omissions in the contents of this message which arise as a result of e-mail transmission.

From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of feliciaa -xSent: Monday, April 05, 2010 9:49 AMblepharophimosis Subject: RE: blepharophimosis New Memeber

Thank you, I feel very blessed. Do you have BLEPH ?

blepharophimosis From: nicki.venableco (DOT) allen.in.usDate: Mon, 5 Apr 2010 08:04:25 -0400Subject: RE: blepharophimosis New Memeber

New Member:You will never be judged by me... I just want to say welcome and anything that I can provide you with I will. Congrats on being a mother because there are females with Bleph that cannot conceive because of POF. You are blessed!!!! I hope you find all the answers you seek!!!!Nicki -----Original Message-----From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of felicia.macneilSent: Saturday, April 03, 2010 11:18 PMblepharophimosis Subject: blepharophimosis New MemeberHello, I am recently a new number. I have blepharophimosis, I am now 19.. and actually a mother of a 4 month old. Please dont judge.. But its really made me question who I am .. due to the fact that my daughter was not born with blepharophimosis like I was. Ive just been looking for information .. and a little surport. Being this way.. sort of makes me feel that Im nothing like everyone else.. and im feeling really out of place from everyone.Im having a hard time ajusting to the whole prospect of being a mom in this condition.. Ive had 2 surgerys when I was a child .. I believe that I was surposed to have a 3rd.. but it never seemed to happen. I actually LOVE my eyes.. the only part I dont seem to love is the fact that it would look so much better if the skin was pinched inbetween my nose to make them appear closer together .. and to make the inner corner whiteness appear. Would the 3rd surgery accomplish that ?.. and are there any risks in taking the surgery ? And also are there any moms out theree who have blepharophismosis?anything really would help .. thankss .

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[Guest guest]

Hello,

I am in Nova Scotia, Canada. Congradulations on your children. They certinatly can be a blessing. As of right now me and my daughter live with my mom. Although she works most of the day.. she is there when things get rough. I am eventualy going to have to move out, due to lack of space. Im personaly terrifed. I dont have much of an education, and trying to afford daycare, transportion and living space is way out of my head. If theres anything I can help you with regarding questions about BPES, I can try to asnwer them for you. I've learned quite a lot over the last few years, and I am continuing to research. Has your daughter receieve any surgerys yet? I could show you some photos to give you an idea of what 2 surgerys can accomplish.. depending on how bad the BPES is in your daughter.

blepharophimosis From: themamacatt@...Date: Tue, 6 Apr 2010 08:23:14 +0000Subject: blepharophimosis Re: New Memeber

Hi Felicia, I'm Ann, and I'm in Denver, Colorado USA. I'm a proud mommy to 3 gorgeous kids, the youngest of which has BPES. It doesn't run in our family, my daughter is the first. While I don't have BPES myself, I was a mother at a young age. My son was born when I was 18. While I can't help you out with most of your BPES questions (we're still learning about it ourselves, my youngest is only 2 1/2), I can be there for you if you ever just need to vent about being a mom so young. I was a single mom, and I know how hard that is alone, and yet you have so much more on your plate. Wish I could help more. Congrats on being able to have children, as so many can't. Please feel free to email me anytime. I have pics of my youngest in the photo section. You can find them under Catalina. I haven't updated them since her last surgery 2 months ago, but I will get to that later today. Always, AnnP.S. Where are you located? Don't need an address, just a general area. It helps so that if there are people in your area that are on here, they can recommend docs to you who can better answer your questions than we here can.>> Hello, I am recently a new number. I have blepharophimosis, I am now 19.. and actually a mother of a 4 month old. Please dont judge.. But its really made me question who I am .. due to the fact that my daughter was not born with blepharophimosis like I was. Ive just been looking for information .. and a little surport. Being this way.. sort of makes me feel that Im nothing like everyone else.. and im feeling really out of place from everyone.> > Im having a hard time ajusting to the whole prospect of being a mom in this condition.. > > Ive had 2 surgerys when I was a child .. I believe that I was surposed to have a 3rd.. but it never seemed to happen. I actually LOVE my eyes.. the only part I dont seem to love is the fact that it would look so much better if the skin was pinched inbetween my nose to make them appear closer together .. and to make the inner corner whiteness appear. Would the 3rd surgery accomplish that ?.. and are there any risks in taking the surgery ? > > And also are there any moms out theree who have blepharophismosis?> > anything really would help .. > > thankss .>

Got a phone? Get Hotmail Messenger for mobile!

[Guest guest]

Hello, Felicia

Welcome to the BPES group,

Just wanted to say hello to a fellow canadian, we are in Edmonton Alberta

I have a 12 yr old son who has BPES, we have been quite successful in our

surguries considering his first was at 5 weeks of age.. (mandatory as his vision

was almost completely obstructed)

Anyway welcome to the group... there are some very informative individuals in

the group as you have seen already, and some medical professionals (myself

included)

Tonikka (Lynden)

Edmonton Alberta CANADA

>

>

> Hi,

>

> I live in Nova Scotia Canada. Come to find out I've only recieved 2 surgerys.

>

> Do you happen to know anything about fertility within women with BPES..

>

> Since I concieved one child, does it mean I can concieve more?

>

> I would like to have a few children in my lifetime..

>

> And I am just wondering if TYPE I and TYPE 2 can be combined, just making it

harder for some

>

> to concieve, rather than not being able to concieve at all..

>

> Because its not like I was trying to get pregnant,

>

> but there was ocasional unprotected sex with the same partner for quite a

awhile..

>

> Am just wondering if not being pregnant before was due to fertility problems.

>

>

>

> blepharophimosis

> From: joyceaibitoye@...

> Date: Mon, 5 Apr 2010 07:32:00 -0400

> Subject: Re: blepharophimosis New Memeber

>

>

>

>

>

>

> Hi Felicia

>

> My name is Joyce. I have 2 daughters with BPES 16 and 12 years old. Live in

London UK.

>

> Questions about the suitability of surgery depends largely on individual

cases, results will depend on the facial features and other things pertaining to

the person. Both my girls have had surgery. Mayowa 16 years old has had 3 and

Tina has had 2 surgeries. The results have varied widely. Tina who had only 2

seemed to have better results.

>

> The other issue is that of fertility. Some type of BPES prevent women from

being able to conceive. Congratulations on the birth of your child.

>

> A good idea is to find people in the area where you are situated, as they may

know of doctors that can answer your questions also read up on some of the

earlier post and finally look up some of the before/after pictures.

>

> I hope this helps

>

> Happy Easter

>

>

> Joyce

> London UK

>

>

>

>

>

>

> _________________________________________________________________

> Got a phone? Get Hotmail & Messenger for mobile!

> http://go.microsoft.com/?linkid=9724464

>

[Guest guest]

Hello,

I understand that your a medical perfessional.

Just a quick question, there are times where my vision goes blurry when I make quick head movements.

At first I thought it had to do with not getting enough water. I drink 6 glasses on average a day. And I am still

ocasionally getting the moments where my vision goes blurry. Could this be related to possible obstuction of sight within the future?

I've had 2 surgerys over 10 years ago.

blepharophimosis From: lyndenhunter@...Date: Thu, 8 Apr 2010 03:36:41 +0000Subject: blepharophimosis Re: New Memeber

Hello, FeliciaWelcome to the BPES group, Just wanted to say hello to a fellow canadian, we are in Edmonton AlbertaI have a 12 yr old son who has BPES, we have been quite successful in our surguries considering his first was at 5 weeks of age.. (mandatory as his vision was almost completely obstructed)Anyway welcome to the group... there are some very informative individuals in the group as you have seen already, and some medical professionals (myself included)Tonikka (Lynden)Edmonton Alberta CANADA>> > Hi,> > I live in Nova Scotia Canada. Come to find out I've only recieved 2 surgerys. > > Do you happen to know anything about fertility within women with BPES.. > > Since I concieved one child, does it mean I can concieve more?> > I would like to have a few children in my lifetime.. > > And I am just wondering if TYPE I and TYPE 2 can be combined, just making it harder for some> > to concieve, rather than not being able to concieve at all..> > Because its not like I was trying to get pregnant, > > but there was ocasional unprotected sex with the same partner for quite a awhile..> > Am just wondering if not being pregnant before was due to fertility problems.> > > > blepharophimosis > From: joyceaibitoye@...> Date: Mon, 5 Apr 2010 07:32:00 -0400> Subject: Re: blepharophimosis New Memeber> > > > > > > Hi Felicia> > My name is Joyce. I have 2 daughters with BPES 16 and 12 years old. Live in London UK.> > Questions about the suitability of surgery depends largely on individual cases, results will depend on the facial features and other things pertaining to the person. Both my girls have had surgery. Mayowa 16 years old has had 3 and Tina has had 2 surgeries. The results have varied widely. Tina who had only 2 seemed to have better results.> > The other issue is that of fertility. Some type of BPES prevent women from being able to conceive. Congratulations on the birth of your child.> > A good idea is to find people in the area where you are situated, as they may know of doctors that can answer your questions also read up on some of the earlier post and finally look up some of the before/after pictures.> > I hope this helps> > Happy Easter> > > Joyce > London UK> > > > > > > __________________________________________________________> Got a phone? Get Hotmail & Messenger for mobile!> http://go.microsoft.com/?linkid=9724464>

Live connected. Get Hotmail Messenger for mobile.

[Guest guest]

My son who had surgery at 10 weeks for ptosis. He is 8 now and going for his second ptosis surgery as his vision is beginning to be obsructed from his lids dropping.

In a message dated 4/16/2010 12:39:48 P.M. Eastern Daylight Time, jigna_shah83@... writes:

Hi all,

I am recently a new number from India. I have blepharophimosis type 1, I am now 27 yrs old, i had a surgery wen i was a yr old, recently wen i consulted a doc, he suggested that i could opt for Ptosis surgery using silicon red. Im really confused whether should i go ahead with another surgery. I know such cases are very rare in India.

Can any one suggest if is it advisable to go ahead with the 2nd surgery. Wat are the risk involved, post surgery impacts etc.

I'm really confused.. Plzzzzz help..

Any info on the same will be of great help to me.

Regards

Jigs

From: Nicki Venable <nicki.venableco (DOT) allen.in.us>"blepharophimosis " <blepharophimosis >Sent: Mon, 5 April, 2010 5:34:25 PMSubject: RE: blepharophimosis New Memeber

New Member:You will never be judged by me... I just want to say welcome and anything that I can provide you with I will. Congrats on being a mother because there are females with Bleph that cannot conceive because of POF. You are blessed!!!! I hope you find all the answers you seek!!!!Nicki blepharophimosis New MemeberHello, I am recently a new number. I have blepharophimosis, I am now 19.. and actually a mother of a 4 month old. Please dont judge.. But its really made me question who I am .. due to the fact that my daughter was not born with blepharophimosis like I was. Ive just been looking for information .. and a little surport. Being this way.. sort of makes me feel that Im nothing like everyone else.. and im feeling really out of place from everyone.Im having a hard time ajusting to the whole prospect of being a mom in this condition.. Ive had 2 surgerys when I was a child .. I believe that I was surposed to have a 3rd.. but it never seemed to happen. I actually LOVE my eyes.. the only part I dont seem to love is the fact that it would look so much better if the skin was pinched inbetween my nose to make them appear closer together .. and to make the inner corner whiteness appear. Would the 3rd surgery accomplish that ?.. and are there any risks in taking the surgery ? And also are there any moms out theree who have blepharophismosis?anything really would help .. thankss .

Send free SMS to your Friends on Mobile from your Messenger. Download Now! http://messenger./download.php

[Guest guest]

Hi all,I am recently a new number from India. I have blepharophimosis type 1, I am now 27 yrs old, i had a surgery wen i was a yr old, recently wen i consulted a doc, he suggested that i could opt for Ptosis surgery using silicon red. Im really confused whether should i go ahead with another surgery. I know such cases are very rare in India.Can any one suggest if is it advisable to go ahead with the 2nd surgery. Wat are the risk involved, post surgery impacts etc.I'm really confused.. Plzzzzz help..Any info on the same will be of great help to me.RegardsJigsFrom: Nicki Venable <nicki.venable@...>"blepharophimosis " <blepharophimosis >Sent: Mon, 5 April, 2010 5:34:25 PMSubject: RE: blepharophimosis New Memeber

New Member:

You will never be judged by me... I just want to say welcome and anything that I can provide you with I will. Congrats on being a mother because there are females with Bleph that cannot conceive because of POF. You are blessed!!!! I hope you find all the answers you seek!!!!

Nicki

blepharophimosis New Memeber

Hello, I am recently a new number. I have blepharophimosis, I am now 19.. and actually a mother of a 4 month old. Please dont judge.. But its really made me question who I am .. due to the fact that my daughter was not born with blepharophimosis like I was. Ive just been looking for information .. and a little surport. Being this way.. sort of makes me feel that Im nothing like everyone else.. and im feeling really out of place from everyone.

Im having a hard time ajusting to the whole prospect of being a mom in this condition..

Ive had 2 surgerys when I was a child .. I believe that I was surposed to have a 3rd.. but it never seemed to happen. I actually LOVE my eyes.. the only part I dont seem to love is the fact that it would look so much better if the skin was pinched inbetween my nose to make them appear closer together .. and to make the inner corner whiteness appear. Would the 3rd surgery accomplish that ?.. and are there any risks in taking the surgery ?

And also are there any moms out theree who have blepharophismosis?

anything really would help ..

thankss .

Send free SMS to your Friends on Mobile from your Messenger. Download Now! http://messenger./download.php

[Guest guest]

Hello Jigs,

If you are not sure then don't hesitate to get a second opinion, I think

everyone has varying degrees of BPES and that determines on when any surgeries

should be done, my son was 5 weeks old when he received his first surgery

because his eye lids obstructed his vision 95%,

Everyone here will have great advice but their advice is usually specific to

their own experience, but if you are unsure maybe make another appointment with

your doctor again and ask them why they want to do another surgery now, make

them tell you in detail so you have all the facts, that might make your decision

easier because of course no one can make that decision but you...

Tonikka (Lynden)

Edmonton CANADA

>

> Hi all,

>

> I am recently a new number from India. I have blepharophimosis type 1, I am

now 27 yrs old, i had a surgery wen i was a yr old, recently wen i consulted a

doc, he suggested that i could opt for Ptosis surgery using silicon red. Im

really confused whether should i go ahead with another surgery. I know such

cases are very rare in India.

>

>

> Can any one suggest if is it advisable to go ahead with the 2nd surgery. Wat

are the risk involved, post surgery impacts etc.

>

>

> I'm really confused.. Plzzzzz help..

>

> Any info on the same will be of great help to me.

>

> Regards

>

> Jigs

>

>

> ________________________________

> From: Nicki Venable <nicki.venable@...>

> " blepharophimosis " <blepharophimosis >

> Sent: Mon, 5 April, 2010 5:34:25 PM

> Subject: RE: blepharophimosis New Memeber

>

>

> New Member:

>

> You will never be judged by me... I just want to say welcome and anything

that I can provide you with I will. Congrats on being a mother because there

are females with Bleph that cannot conceive because of POF. You are blessed!!!!

I hope you find all the answers you seek!!!!

>

> Nicki

>

> blepharophimosis New Memeber

>

> Hello, I am recently a new number. I have blepharophimosis, I am now 19.. and

actually a mother of a 4 month old. Please dont judge.. But its really made me

question who I am .. due to the fact that my daughter was not born with

blepharophimosis like I was. Ive just been looking for information .. and a

little surport. Being this way.. sort of makes me feel that Im nothing like

everyone else.. and im feeling really out of place from everyone.

>

> Im having a hard time ajusting to the whole prospect of being a mom in this

condition..

>

> Ive had 2 surgerys when I was a child .. I believe that I was surposed to have

a 3rd.. but it never seemed to happen. I actually LOVE my eyes.. the only part I

dont seem to love is the fact that it would look so much better if the skin was

pinched inbetween my nose to make them appear closer together .. and to make the

inner corner whiteness appear. Would the 3rd surgery accomplish that ?.. and are

there any risks in taking the surgery ?

>

> And also are there any moms out theree who have blepharophismosis?

>

> anything really would help ..

>

> thankss .

>

>

>

>

> Send free SMS to your Friends on Mobile from your Messenger. Download

Now! http://messenger./download.php

>

[Guest guest]

Thanks a ton Tonikka.Im consulting another doc this week. based on his opinion i'll make my decision.Regards,JignaBangalore( India)From: Tonikka <lyndenhunter@...>blepharophimosis Sent: Sat, 17 April, 2010 3:48:21 AMSubject: blepharophimosis Re: New Memeber

Hello Jigs,

If you are not sure then don't hesitate to get a second opinion, I think everyone has varying degrees of BPES and that determines on when any surgeries should be done, my son was 5 weeks old when he received his first surgery because his eye lids obstructed his vision 95%,

Everyone here will have great advice but their advice is usually specific to their own experience, but if you are unsure maybe make another appointment with your doctor again and ask them why they want to do another surgery now, make them tell you in detail so you have all the facts, that might make your decision easier because of course no one can make that decision but you...

Tonikka (Lynden)

Edmonton CANADA

>

> Hi all,

>

> I am recently a new number from India. I have blepharophimosis type 1, I am now 27 yrs old, i had a surgery wen i was a yr old, recently wen i consulted a doc, he suggested that i could opt for Ptosis surgery using silicon red. Im really confused whether should i go ahead with another surgery. I know such cases are very rare in India.

>

>

> Can any one suggest if is it advisable to go ahead with the 2nd surgery. Wat are the risk involved, post surgery impacts etc.

>

>

> I'm really confused.. Plzzzzz help..

>

> Any info on the same will be of great help to me.

>

> Regards

>

> Jigs

>

>

> ____________ _________ _________ __

> From: Nicki Venable <nicki.venable@ ...>

> "blepharophimosis" <blepharophimosis>

> Sent: Mon, 5 April, 2010 5:34:25 PM

> Subject: RE: blepharophimosis New Memeber

>

>

> New Member:

>

> You will never be judged by me... I just want to say welcome and anything that I can provide you with I will. Congrats on being a mother because there are females with Bleph that cannot conceive because of POF. You are blessed!!!! I hope you find all the answers you seek!!!!

>

> Nicki

>

> blepharophimosis New Memeber

>

> Hello, I am recently a new number. I have blepharophimosis, I am now 19.. and actually a mother of a 4 month old. Please dont judge.. But its really made me question who I am .. due to the fact that my daughter was not born with blepharophimosis like I was. Ive just been looking for information .. and a little surport. Being this way.. sort of makes me feel that Im nothing like everyone else.. and im feeling really out of place from everyone.

>

> Im having a hard time ajusting to the whole prospect of being a mom in this condition..

>

> Ive had 2 surgerys when I was a child .. I believe that I was surposed to have a 3rd.. but it never seemed to happen. I actually LOVE my eyes.. the only part I dont seem to love is the fact that it would look so much better if the skin was pinched inbetween my nose to make them appear closer together .. and to make the inner corner whiteness appear. Would the 3rd surgery accomplish that ?.. and are there any risks in taking the surgery ?

>

> And also are there any moms out theree who have blepharophismosis?

>

> anything really would help ..

>

> thankss .

>

>

>

>

> Send free SMS to your Friends on Mobile from your Messenger. Download Now! http://messenger. / download. php

>

Send free SMS to your Friends on Mobile from your Messenger. Download Now! http://messenger./download.php

[Guest guest]

Hi - don't ever be sorry - vent all you want and ask Anything! This is your safe place where you can find out details about this scary, lonely illness from women who have been in your shoes. My husband and I were on the fritz because my worst part of the illness came in the 1st year of our marriage (last year). He too was convinced i was sick from something else and calling all his Dr friends to try to convince me to stop seeing my alternative drs. it was a nightmare. It just compelled me to prove I wasn't crazy because all they could find in the vials and vials of blood they took was that i had a positive ANA and high cortisol levels. So I did lots and lots of research. Turns out, he's totally on board now and i've educated him completely. Thank God. but I can't imagine the stress with 6 kids!! i'm sorry you don't have your family's support. that is so important. I know a girl who traveled across the US to see Dr Feng in ohio... when they know you're traveling, they do the consult the day before the surgery i think. and as for stiches out- i think i remember her saying you can find a local dr to get them out. She did recover in a hotel room. I think she hired someone to help her the day after. it's all very stressful I know, just wanted to extend my support to you . I had to see many Drs before I could find one that understood and helps. Bev in CA---------- Original Message ----------From: Condon <mamacondon6@...> Subject: new memeberDate: Tue, 15 Feb 2011 05:21:45 -0800 (PST)Hi, Believe it or not I'm not computer savoy at all, I'm not sure I'm in the right format to send a message to the group or not, so i apologize if I'm in the wrong place.I think I signed up for only individual messages? Okay, I'm hoping to get explant surgery by one of the recommended surgeons, but I will travel from NY, how does that work? They do a consult and then you travel back for the surgery on a different day? Do you stay in a hotel while you recover? How about follow up visits? Just wondering if anyone has done it this way , and how it worked in real life. I have six kids and a career in law-enforcement , and if I go to Atlanta, I would have to make all kinds of arrangements...it would be worth it...just would like to talk to someone who has done the long distance explant. I hope I'm not bothering anyone, I feel very alone, my family doesn't know I did this in the first place ,so I can't expect any help there . And my husband and I are having problems ( 20 yrs married) because my health problems are really taking a toll on our marriage. He doesn't understand why I feel horrible all the time because it wont show up on any test. He is starting to say stuff like it's in my head and maybe I should take anxiety meds. or anti-depressants. I don't believe in regular meds and drs. I got to a ND and treat all ailments w/ homeopathic remedies. My dr is not helpful w/ any tests, he wants me to take a pill and relax!! I am really very alone in this fight thanks for being there and listening.....I'm sorry if I'm in the wrong place..if so can someone point out the right spot to go ...I don't do this computer thing at all...Thanks again We won't tell. Get more on shows you hate to love(and love to hate): TV's Guilty Pleasures list.

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