Guest guest Posted July 21, 2005 Report Share Posted July 21, 2005 Jen, My heart goes out to you. You sound so depressed and frustrated. I know it doesn't help to say this, but I'm sorry. Life is NOT fair and it sounds like you are getting the brunt end of it right now. I wish I could help in some way. Please know that I am praying for you and you are in my thoughts. Anytime you need to speak to someone, please, e-mail me. I have been a single mom for 4 years and now I am engaged to a wonderful man...however, he doesn't get this disease. He feels women should be the 100% caretaker of the home and although he's wonderful with the children, working full time and taking care of the home and 70% of the 3 children, he thinks I just need to try harder. So I DO UNDERSTAND. Please e-mail me if you'd like. I will keep praying for you. In His Love, Prisicilla saralaughs02 <saralaughs02@...> wrote: I went to the RA doc on the 12th. Since I came home, my right shoulder and my right hip are worse than ever. When I fold the laundry, it's all I can do to finish it. I went grocery shopping tonight, and my hip is killing me. My hands, my wrists, my elbows, it's coming on so fast. I've had it for a long time but just these last few months it's been getting really and the last few wks have been worse than it's ever been. Most of this is " what if " worrying. I'm so afraid she's not going to give me something other than steroids and this anti-inflammatory (which does nothing for me). I don't know what to do. I'm going back on the 29th and it feels like it's taking forever to get here. I hurt every single day now, all day long, all night. I don't sleep. I quit talking to my DH about it bc he couldn't care less. I told him that I think I may need to switch my major in school and he just told me to just go for nursing and see how it goes. I don't want to waste time and money on an edu that I won't be able to use. Even if I waste a year, that's still going to set me back a year in a psych major, kwim? He doesn't get it. I had a sitter for the 29th but then the boys' gma cut short the visit (I knew she was going to do this) and now I have to find a sitter. My family is not interested in helping. My one sister is 45 mins away and it will be complete back tracking to take the kids to her. Plus her house has cat pee all over it. I don't want my kids there, kwim? I'm so scared and it hurts so bad. I don't want to live like this. What should I do?? Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2005 Report Share Posted July 21, 2005 Jen, My heart goes out to you. You sound so depressed and frustrated. I know it doesn't help to say this, but I'm sorry. Life is NOT fair and it sounds like you are getting the brunt end of it right now. I wish I could help in some way. Please know that I am praying for you and you are in my thoughts. Anytime you need to speak to someone, please, e-mail me. I have been a single mom for 4 years and now I am engaged to a wonderful man...however, he doesn't get this disease. He feels women should be the 100% caretaker of the home and although he's wonderful with the children, working full time and taking care of the home and 70% of the 3 children, he thinks I just need to try harder. So I DO UNDERSTAND. Please e-mail me if you'd like. I will keep praying for you. In His Love, Prisicilla saralaughs02 <saralaughs02@...> wrote: I went to the RA doc on the 12th. Since I came home, my right shoulder and my right hip are worse than ever. When I fold the laundry, it's all I can do to finish it. I went grocery shopping tonight, and my hip is killing me. My hands, my wrists, my elbows, it's coming on so fast. I've had it for a long time but just these last few months it's been getting really and the last few wks have been worse than it's ever been. Most of this is " what if " worrying. I'm so afraid she's not going to give me something other than steroids and this anti-inflammatory (which does nothing for me). I don't know what to do. I'm going back on the 29th and it feels like it's taking forever to get here. I hurt every single day now, all day long, all night. I don't sleep. I quit talking to my DH about it bc he couldn't care less. I told him that I think I may need to switch my major in school and he just told me to just go for nursing and see how it goes. I don't want to waste time and money on an edu that I won't be able to use. Even if I waste a year, that's still going to set me back a year in a psych major, kwim? He doesn't get it. I had a sitter for the 29th but then the boys' gma cut short the visit (I knew she was going to do this) and now I have to find a sitter. My family is not interested in helping. My one sister is 45 mins away and it will be complete back tracking to take the kids to her. Plus her house has cat pee all over it. I don't want my kids there, kwim? I'm so scared and it hurts so bad. I don't want to live like this. What should I do?? Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2005 Report Share Posted July 21, 2005 Ohhh Jen, I am so sorry you are in so much pain. I suggest you call the doctors office and inform them that you are in excruciating pain and you don't think you can stand it. Hopefully they will get you a pain medicine that helps. I am on Ultram, ( Tramadol) generic and it is helping. I dont take it unless the pain is to the point I can't handle it. Inflamation meds arent going to help with pain immediately. Hope you can get what you need, hugs and prayers.. ____________________________________________________ Start your day with - make it your home page http://www./r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2005 Report Share Posted July 21, 2005 Ohhh Jen, I am so sorry you are in so much pain. I suggest you call the doctors office and inform them that you are in excruciating pain and you don't think you can stand it. Hopefully they will get you a pain medicine that helps. I am on Ultram, ( Tramadol) generic and it is helping. I dont take it unless the pain is to the point I can't handle it. Inflamation meds arent going to help with pain immediately. Hope you can get what you need, hugs and prayers.. ____________________________________________________ Start your day with - make it your home page http://www./r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2005 Report Share Posted July 21, 2005 Jen: I am so sorry you are having such a rough time..........please know that we are all here for you whenever you need a shoulder...most of us have been in your position at one time or another with our family members just not getting it. I hope you can get some pain meds from your dr that will help you and I will keep you in my thoughts and prayers. Please feel free to email me privately if you need to talk. God bless you and gentle hugs Pat in so Ore. --- saralaughs02 <saralaughs02@...> wrote: > I went to the RA doc on the 12th. Since I came > home, my right > shoulder and my right hip are worse than ever. When > I fold the > laundry, it's all I can do to finish it. I went > grocery shopping > tonight, and my hip is killing me. My hands, my > wrists, my elbows, > it's coming on so fast. I've had it for a long time > but just these > last few months it's been getting really and the > last few wks have > been worse than it's ever been. > > Most of this is " what if " worrying. I'm so afraid > she's not going to > give me something other than steroids and this > anti-inflammatory > (which does nothing for me). I don't know what to > do. I'm going > back on the 29th and it feels like it's taking > forever to get here. > > I hurt every single day now, all day long, all > night. I don't > sleep. I quit talking to my DH about it bc he > couldn't care less. I > told him that I think I may need to switch my major > in school and he > just told me to just go for nursing and see how it > goes. I don't > want to waste time and money on an edu that I won't > be able to use. > Even if I waste a year, that's still going to set me > back a year in a > psych major, kwim? He doesn't get it. > > I had a sitter for the 29th but then the boys' gma > cut short the > visit (I knew she was going to do this) and now I > have to find a > sitter. My family is not interested in helping. My > one sister is 45 > mins away and it will be complete back tracking to > take the kids to > her. Plus her house has cat pee all over it. I > don't want my kids > there, kwim? > > I'm so scared and it hurts so bad. I don't want to > live like this. > > What should I do?? > > Jen > > > > > ____________________________________________________ Start your day with - make it your home page http://www./r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2005 Report Share Posted July 21, 2005 Jen: I am so sorry you are having such a rough time..........please know that we are all here for you whenever you need a shoulder...most of us have been in your position at one time or another with our family members just not getting it. I hope you can get some pain meds from your dr that will help you and I will keep you in my thoughts and prayers. Please feel free to email me privately if you need to talk. God bless you and gentle hugs Pat in so Ore. --- saralaughs02 <saralaughs02@...> wrote: > I went to the RA doc on the 12th. Since I came > home, my right > shoulder and my right hip are worse than ever. When > I fold the > laundry, it's all I can do to finish it. I went > grocery shopping > tonight, and my hip is killing me. My hands, my > wrists, my elbows, > it's coming on so fast. I've had it for a long time > but just these > last few months it's been getting really and the > last few wks have > been worse than it's ever been. > > Most of this is " what if " worrying. I'm so afraid > she's not going to > give me something other than steroids and this > anti-inflammatory > (which does nothing for me). I don't know what to > do. I'm going > back on the 29th and it feels like it's taking > forever to get here. > > I hurt every single day now, all day long, all > night. I don't > sleep. I quit talking to my DH about it bc he > couldn't care less. I > told him that I think I may need to switch my major > in school and he > just told me to just go for nursing and see how it > goes. I don't > want to waste time and money on an edu that I won't > be able to use. > Even if I waste a year, that's still going to set me > back a year in a > psych major, kwim? He doesn't get it. > > I had a sitter for the 29th but then the boys' gma > cut short the > visit (I knew she was going to do this) and now I > have to find a > sitter. My family is not interested in helping. My > one sister is 45 > mins away and it will be complete back tracking to > take the kids to > her. Plus her house has cat pee all over it. I > don't want my kids > there, kwim? > > I'm so scared and it hurts so bad. I don't want to > live like this. > > What should I do?? > > Jen > > > > > ____________________________________________________ Start your day with - make it your home page http://www./r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2005 Report Share Posted July 21, 2005 Jen, I can feel for you and I am soooo sorry that you are going through such a difficult time right now. Call your doctor's office and see if you can move up your appointment or if they can't then see if they could put you on the list in case of a cancellation. The stress you are going through, including the " what if " worry you are feeling doesn't help any. I know when I get stressed my symptoms flare severly. Don't be afraid to ask for something stronger for pain. I went through the same thing and finally had to just say NO to the anti inflammatories because it was just a wast of money. I went through the Celebrex, Ibuprofen, Naprosyn, Viox, Bextra, and a number of other NSAIDS. Steroids were the only thing that really helped. But, I finally got Vicodin ES from my doc and was able to cut back on my steroids (he also introduced more DMARDS). But, with the DMARDS I was able to cut back on steroids and only take them when I flare. I take the Vicodin every night. Sometimes more frequently if needed. Don't be afraid to ask. Your pain is real. It only leads to more stress. Tell your doctor the truth and tell her you want something stronger. I was, and sometimes still do, have difficulty sleeping. The steroids don't help that any. Be sure not to just stop taking your steroids, either. You need to come off of them slowly at the advice of your doctor. School is a stressor. A big stressor!! Having family who doesn't understand, or just doesn't plane GET it doesn't help that stress either. I know, as many people in here do, it's difficult to talk to someone who doesn't get it. They think that it's just " arthritis " and everyone has that. I really wish they would drop the " arthritis " part out of the name. Mostly because of the reactions you get. I know it's there because it indicates " joint inflammation " , but unfortunately that is the only word people who don't have it hear. It will get better. But, it won't happen overnight. I know that frustration you are going through. As for your major in school... nursing is a wonderful field to go into, but it isn't easy. I've been a nurse for 12 years now. I was diagnosed about 3 years ago and I am on my feet ALL day working in surgery. Working the floor isn't any better. There are many other options in nursing now available such as case management, home health, managerial positions, ect. Something there may be of help. It is difficult for others to understand. It's back to that old saying of " you don't look sick " . Everytime I hear that I just want to scream!!!!!!!! Hang in there. There truly is a light at the end of the tunnel. It's just that now it probably feels like the bulb went out!! If you need to vent or just want to talk, feel free to post it here or email me privetly. Take care......Marina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2005 Report Share Posted July 21, 2005 Jen, I can feel for you and I am soooo sorry that you are going through such a difficult time right now. Call your doctor's office and see if you can move up your appointment or if they can't then see if they could put you on the list in case of a cancellation. The stress you are going through, including the " what if " worry you are feeling doesn't help any. I know when I get stressed my symptoms flare severly. Don't be afraid to ask for something stronger for pain. I went through the same thing and finally had to just say NO to the anti inflammatories because it was just a wast of money. I went through the Celebrex, Ibuprofen, Naprosyn, Viox, Bextra, and a number of other NSAIDS. Steroids were the only thing that really helped. But, I finally got Vicodin ES from my doc and was able to cut back on my steroids (he also introduced more DMARDS). But, with the DMARDS I was able to cut back on steroids and only take them when I flare. I take the Vicodin every night. Sometimes more frequently if needed. Don't be afraid to ask. Your pain is real. It only leads to more stress. Tell your doctor the truth and tell her you want something stronger. I was, and sometimes still do, have difficulty sleeping. The steroids don't help that any. Be sure not to just stop taking your steroids, either. You need to come off of them slowly at the advice of your doctor. School is a stressor. A big stressor!! Having family who doesn't understand, or just doesn't plane GET it doesn't help that stress either. I know, as many people in here do, it's difficult to talk to someone who doesn't get it. They think that it's just " arthritis " and everyone has that. I really wish they would drop the " arthritis " part out of the name. Mostly because of the reactions you get. I know it's there because it indicates " joint inflammation " , but unfortunately that is the only word people who don't have it hear. It will get better. But, it won't happen overnight. I know that frustration you are going through. As for your major in school... nursing is a wonderful field to go into, but it isn't easy. I've been a nurse for 12 years now. I was diagnosed about 3 years ago and I am on my feet ALL day working in surgery. Working the floor isn't any better. There are many other options in nursing now available such as case management, home health, managerial positions, ect. Something there may be of help. It is difficult for others to understand. It's back to that old saying of " you don't look sick " . Everytime I hear that I just want to scream!!!!!!!! Hang in there. There truly is a light at the end of the tunnel. It's just that now it probably feels like the bulb went out!! If you need to vent or just want to talk, feel free to post it here or email me privetly. Take care......Marina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2008 Report Share Posted February 8, 2008 Hello to all that are reading this, I am a new member and just found out today that I have Blepharophimosis syndrome. It kind of feels weird saying that, but I grew up thinking I was adopted. I remember questioning if I really did belong with my family because I never seem to fit in. My apologies, my name is Tameria, and I am a full- blooded Native American woman from the United States (Arizona) and I am still skeptical about what I found out earlier. It all started with me getting my annual eye exam (well, way before then - infant/toddler time frame - but in this case, this year) then I was referred to ophthalmology. As soon as I walked in the doctor's office, he just stared at me...studying me for a moment (mind you, I've always been self-conscious about my eyes) so I felt a little bit (okay, a lot) of awkwardness. The first words to come out of his mouth were, " I know what you have. " I was stunned and for a moment, confused. He pulled one of his many medical books, showed me pictures and read out loud what Blepharophimosis and BPES is. After that, all I remember was having a huge lump in my throat and trying to hold back the tears. I don't know what I was feeling, but I wanted so bad to cry. Luckily I was able to keep my composure. Now that several hours have passed and I had time to think about it, I feel some what the same. I mean, I still want to cry, but at the same time, another part of me is relieved to know that a lot of other questions have been answered (besides, where is crying going to get me?). Right now, I believe I am uncertain of what's supposed to happen next. Yes, I did get a chance to read a little more about Blepharophimosis and found out I am not the only one, but I still feel a little 'iffy' and depressed about it. I don't know any other way to express myself, but if anyone can say something to enlighten my thoughts, that would be greatly appreciated..., I guess I am seeking empathy. Sorry for the lengthiness, but thanks for reading. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2008 Report Share Posted February 8, 2008 Tameria you are a fantastic writer. aedan and raina's momWho's never won? Biggest Grammy Award surprises of all time on AOL Music. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2008 Report Share Posted February 8, 2008 > > Hello to all that are reading this, I am a new member and just found > out today that I have Blepharophimosis syndrome. It kind of feels > weird saying that, but I grew up thinking I was adopted. I remember > questioning if I really did belong with my family because I never > seem to fit in. My apologies, my name is Tameria, and I am a full- > blooded Native American woman from the United States (Arizona) and I > am still skeptical about what I found out earlier. > It all started with me getting my annual eye exam (well, way before > then - infant/toddler time frame - but in this case, this year) then > I was referred to ophthalmology. As soon as I walked in the doctor's > office, he just stared at me...studying me for a moment (mind you, > I've always been self-conscious about my eyes) so I felt a little > bit (okay, a lot) of awkwardness. The first words to come out of his > mouth were, " I know what you have. " I was stunned and for a moment, > confused. He pulled one of his many medical books, showed me > pictures and read out loud what Blepharophimosis and BPES is. After > that, all I remember was having a huge lump in my throat and trying > to hold back the tears. I don't know what I was feeling, but I > wanted so bad to cry. Luckily I was able to keep my composure. > Now that several hours have passed and I had time to think about it, > I feel some what the same. I mean, I still want to cry, but at the > same time, another part of me is relieved to know that a lot of > other questions have been answered (besides, where is crying going > to get me?). Right now, I believe I am uncertain of what's supposed > to happen next. Yes, I did get a chance to read a little more about > Blepharophimosis and found out I am not the only one, but I still > feel a little 'iffy' and depressed about it. I don't know any other > way to express myself, but if anyone can say something to enlighten > my thoughts, that would be greatly appreciated..., I guess I am > seeking empathy. > Sorry for the lengthiness, but thanks for reading. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2008 Report Share Posted February 8, 2008 Our daughter was born with BPES and has many other complications as well. We have gone through the why her, why us and I am sure that when she gets older she will as well. We often have to take her to Children's hospital and we see kids who are totally disfigured, kids who can't walk, can't talk, can't see, kids who only have a few months to live. She is the most beautiful little girl on earth to me and I thank God everyday for her and I am thankful that she was spared a million other terrible things that she could have been born with. By the way, it's okay to cry. But when you are done, don't forget to smile. Tony Borrego Pasadena, California --- nativejoyo510 <nativejoyo510@...> wrote: > Hello to all that are reading this, I am a new > member and just found > out today that I have Blepharophimosis syndrome. It > kind of feels > weird saying that, but I grew up thinking I was > adopted. I remember > questioning if I really did belong with my family > because I never > seem to fit in. My apologies, my name is Tameria, > and I am a full- > blooded Native American woman from the United States > (Arizona) and I > am still skeptical about what I found out earlier. > It all started with me getting my annual eye exam > (well, way before > then - infant/toddler time frame - but in this case, > this year) then > I was referred to ophthalmology. As soon as I walked > in the doctor's > office, he just stared at me...studying me for a > moment (mind you, > I've always been self-conscious about my eyes) so I > felt a little > bit (okay, a lot) of awkwardness. The first words to > come out of his > mouth were, " I know what you have. " I was stunned > and for a moment, > confused. He pulled one of his many medical books, > showed me > pictures and read out loud what Blepharophimosis and > BPES is. After > that, all I remember was having a huge lump in my > throat and trying > to hold back the tears. I don't know what I was > feeling, but I > wanted so bad to cry. Luckily I was able to keep my > composure. > Now that several hours have passed and I had time to > think about it, > I feel some what the same. I mean, I still want to > cry, but at the > same time, another part of me is relieved to know > that a lot of > other questions have been answered (besides, where > is crying going > to get me?). Right now, I believe I am uncertain of > what's supposed > to happen next. Yes, I did get a chance to read a > little more about > Blepharophimosis and found out I am not the only > one, but I still > feel a little 'iffy' and depressed about it. I don't > know any other > way to express myself, but if anyone can say > something to enlighten > my thoughts, that would be greatly appreciated..., I > guess I am > seeking empathy. > Sorry for the lengthiness, but thanks for reading. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2008 Report Share Posted February 9, 2008 Hi Tameria, Welcome. You're not alone in finding out later in life that the enhancement we share has a name; that's a common phenomenon on this forum. I didn't find out its name until I was 26 (twenty-odd years ago), and even then I had to explicitly ask my ophthalmic surgeon to write it down for me. Giving it a name is a wonderfully empowering thing. It's rare enough that most doctors have never heard of it, and even many ophthalmic specialists (probably) never see a case in person. That kind of explains why some of us go so long before finding out it has a name. But when I see the posts on this forum about newborns and young'ns being recognised as having BPES enhancement, the more optimistic voices in my head tell me that medicos are becoming more au fait with it these days? This is a good place to fish for empathy and information. There are folks here from many parts of the world with differing experiences and gifts freely shared. Rob W Oz nativejoyo510 wrote: > > > Hello to all that are reading this, I am a new member and just found > out today that I have Blepharophimosis syndrome. It kind of feels > weird saying that, but I grew up thinking I was adopted. I remember > questioning if I really did belong with my family because I never > seem to fit in. My apologies, my name is Tameria, and I am a full- > blooded Native American woman from the United States (Arizona) and I > am still skeptical about what I found out earlier. > It all started with me getting my annual eye exam (well, way before > then - infant/toddler time frame - but in this case, this year) then > I was referred to ophthalmology. As soon as I walked in the doctor's > office, he just stared at me...studying me for a moment (mind you, > I've always been self-conscious about my eyes) so I felt a little > bit (okay, a lot) of awkwardness. The first words to come out of his > mouth were, " I know what you have. " I was stunned and for a moment, > confused. He pulled one of his many medical books, showed me > pictures and read out loud what Blepharophimosis and BPES is. After > that, all I remember was having a huge lump in my throat and trying > to hold back the tears. I don't know what I was feeling, but I > wanted so bad to cry. Luckily I was able to keep my composure. > Now that several hours have passed and I had time to think about it, > I feel some what the same. I mean, I still want to cry, but at the > same time, another part of me is relieved to know that a lot of > other questions have been answered (besides, where is crying going > to get me?). Right now, I believe I am uncertain of what's supposed > to happen next. Yes, I did get a chance to read a little more about > Blepharophimosis and found out I am not the only one, but I still > feel a little 'iffy' and depressed about it. I don't know any other > way to express myself, but if anyone can say something to enlighten > my thoughts, that would be greatly appreciated. .., I guess I am > seeking empathy. > Sorry for the lengthiness, but thanks for reading. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2008 Report Share Posted February 9, 2008 You don't say about how old you are in your post...trust me when I say that this group has been very supportive and informational since I joined and I am only a parent of a child with BPES. It truly helps to know that you are not the only one-even if you are the only one in your family. It also can be comforting to know what makes you look the way you do and the medical information that you can begin to gather will make sense after you have some time to read and reflect on what you have learned. My thoughts are with you as you begin this journey of discovery. nativejoyo510 <nativejoyo510@...> wrote: Hello to all that are reading this, I am a new member and just found out today that I have Blepharophimosis syndrome. It kind of feels weird saying that, but I grew up thinking I was adopted. I remember questioning if I really did belong with my family because I never seem to fit in. My apologies, my name is Tameria, and I am a full-blooded Native American woman from the United States (Arizona) and I am still skeptical about what I found out earlier.It all started with me getting my annual eye exam (well, way before then - infant/toddler time frame - but in this case, this year) then I was referred to ophthalmology. As soon as I walked in the doctor's office, he just stared at me...studying me for a moment (mind you, I've always been self-conscious about my eyes) so I felt a little bit (okay, a lot) of awkwardness. The first words to come out of his mouth were, "I know what you have." I was stunned and for a moment, confused. He pulled one of his many medical books, showed me pictures and read out loud what Blepharophimosis and BPES is. After that, all I remember was having a huge lump in my throat and trying to hold back the tears. I don't know what I was feeling, but I wanted so bad to cry. Luckily I was able to keep my composure.Now that several hours have passed and I had time to think about it, I feel some what the same. I mean, I still want to cry, but at the same time, another part of me is relieved to know that a lot of other questions have been answered (besides, where is crying going to get me?). Right now, I believe I am uncertain of what's supposed to happen next. Yes, I did get a chance to read a little more about Blepharophimosis and found out I am not the only one, but I still feel a little 'iffy' and depressed about it. I don't know any other way to express myself, but if anyone can say something to enlighten my thoughts, that would be greatly appreciated..., I guess I am seeking empathy.Sorry for the lengthiness, but thanks for reading. Be a better friend, newshound, and know-it-all with Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2008 Report Share Posted February 9, 2008 HI Joy, Welcome to this wonderful group, its excellent news you have joined us. I remember when I joined, I cried for about a week with all of the people that felt the same way as me. Thought I was over it, then 'bam' would read another message.... Me and my daughter both have BPES. I wasnt diagnosed till a little later (though I was still a child), had my first ops at 14. My daughter however was diagnosed immediately. Living with BPES is ok, we are who we are, however it must be confusing to you, I would imagine you are going through what a lot of us did, relief, confusion, anxiety, frustration.. it does ease up, promise. To be able to call what we have a name, helps me, I feel like I am not alone, and understand that others before and after me will have BPES. What we can do right now is raise awareness as much as we can, so the others after us can have an easier journey.... I really hope the few words of encouragement, I have already seen on the mails, will help you. This is a fabulous place, and all understand, be supported, and if there is anything you want to discuss or share, please do.nativejoyo510 <nativejoyo510@...> wrote: Hello to all that are reading this, I am a new member and just found out today that I have Blepharophimosis syndrome. It kind of feels weird saying that, but I grew up thinking I was adopted. I remember questioning if I really did belong with my family because I never seem to fit in. My apologies, my name is Tameria, and I am a full-blooded Native American woman from the United States (Arizona) and I am still skeptical about what I found out earlier.It all started with me getting my annual eye exam (well, way before then - infant/toddler time frame - but in this case, this year) then I was referred to ophthalmology. As soon as I walked in the doctor's office, he just stared at me...studying me for a moment (mind you, I've always been self-conscious about my eyes) so I felt a little bit (okay, a lot) of awkwardness. The first words to come out of his mouth were, "I know what you have." I was stunned and for a moment, confused. He pulled one of his many medical books, showed me pictures and read out loud what Blepharophimosis and BPES is. After that, all I remember was having a huge lump in my throat and trying to hold back the tears. I don't know what I was feeling, but I wanted so bad to cry. Luckily I was able to keep my composure.Now that several hours have passed and I had time to think about it, I feel some what the same. I mean, I still want to cry, but at the same time, another part of me is relieved to know that a lot of other questions have been answered (besides, where is crying going to get me?). Right now, I believe I am uncertain of what's supposed to happen next. Yes, I did get a chance to read a little more about Blepharophimosis and found out I am not the only one, but I still feel a little 'iffy' and depressed about it. I don't know any other way to express myself, but if anyone can say something to enlighten my thoughts, that would be greatly appreciated..., I guess I am seeking empathy.Sorry for the lengthiness, but thanks for reading.Clare Teale www.talking-spirit.moonfruit.com 07776 481481 Looking for last minute shopping deals? Find them fast with Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2008 Report Share Posted February 9, 2008 Hi Tameria! My heart goes out to you feeling so overwhelmed about all this... My daughter who is now 3yrs old has BPES. I remember all the different emotions that we felt when she was diagnosed and I remember how excited and emotional I was to find this group and the sudden relief and comfort in the knowledge that we were no longer alone. We always seem to fear the things that we don't understand, and with time and knowledge I can promise you, that things get better.( although it may not seem so,now) Hang in there!! We are here to share your journey!!! : ) Take care, Machaela (australia)Tony Borrego <t_borrego@...> wrote: Our daughter was born with BPES and has many othercomplications as well. We have gone through the whyher, why us and I am sure that when she gets older shewill as well. We often have to take her to Children'shospital and we see kids who are totally disfigured,kids who can't walk, can't talk, can't see, kids whoonly have a few months to live. She is the mostbeautiful little girl on earth to me and I thank Godeveryday for her and I am thankful that she was spareda million other terrible things that she could havebeen born with.By the way, it's okay to cry. But when you are done,don't forget to smile.Tony BorregoPasadena, California--- nativejoyo510 <nativejoyo510 > wrote:> Hello to all that are reading this, I am a new> member and just found > out today that I have Blepharophimosis syndrome. It> kind of feels > weird saying that, but I grew up thinking I was> adopted. I remember > questioning if I really did belong with my family> because I never > seem to fit in. My apologies, my name is Tameria,> and I am a full-> blooded Native American woman from the United States> (Arizona) and I > am still skeptical about what I found out earlier.> It all started with me getting my annual eye exam> (well, way before > then - infant/toddler time frame - but in this case,> this year) then > I was referred to ophthalmology. As soon as I walked> in the doctor's > office, he just stared at me...studying me for a> moment (mind you, > I've always been self-conscious about my eyes) so I> felt a little > bit (okay, a lot) of awkwardness. The first words to> come out of his > mouth were, "I know what you have." I was stunned> and for a moment, > confused. He pulled one of his many medical books,> showed me > pictures and read out loud what Blepharophimosis and> BPES is. After > that, all I remember was having a huge lump in my> throat and trying > to hold back the tears. I don't know what I was> feeling, but I > wanted so bad to cry. Luckily I was able to keep my> composure.> Now that several hours have passed and I had time to> think about it, > I feel some what the same. I mean, I still want to> cry, but at the > same time, another part of me is relieved to know> that a lot of > other questions have been answered (besides, where> is crying going > to get me?). Right now, I believe I am uncertain of> what's supposed > to happen next. Yes, I did get a chance to read a> little more about > Blepharophimosis and found out I am not the only> one, but I still > feel a little 'iffy' and depressed about it. I don't> know any other > way to express myself, but if anyone can say> something to enlighten > my thoughts, that would be greatly appreciated..., I> guess I am > seeking empathy.> Sorry for the lengthiness, but thanks for reading.> > Get the name you always wanted with the new y7mail email address. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2008 Report Share Posted February 9, 2008 > > > Hello to all that are reading this, I am a new > > member and just found > > out today that I have Blepharophimosis syndrome. It > > kind of feels > > weird saying that, but I grew up thinking I was > > adopted. I remember > > questioning if I really did belong with my family > > because I never > > seem to fit in. My apologies, my name is Tameria, > > and I am a full- > > blooded Native American woman from the United States > > (Arizona) and I > > am still skeptical about what I found out earlier. > > It all started with me getting my annual eye exam > > (well, way before > > then - infant/toddler time frame - but in this case, > > this year) then > > I was referred to ophthalmology. As soon as I walked > > in the doctor's > > office, he just stared at me...studying me for a > > moment (mind you, > > I've always been self-conscious about my eyes) so I > > felt a little > > bit (okay, a lot) of awkwardness. The first words to > > come out of his > > mouth were, " I know what you have. " I was stunned > > and for a moment, > > confused. He pulled one of his many medical books, > > showed me > > pictures and read out loud what Blepharophimosis and > > BPES is. After > > that, all I remember was having a huge lump in my > > throat and trying > > to hold back the tears. I don't know what I was > > feeling, but I > > wanted so bad to cry. Luckily I was able to keep my > > composure. > > Now that several hours have passed and I had time to > > think about it, > > I feel some what the same. I mean, I still want to > > cry, but at the > > same time, another part of me is relieved to know > > that a lot of > > other questions have been answered (besides, where > > is crying going > > to get me?). Right now, I believe I am uncertain of > > what's supposed > > to happen next. Yes, I did get a chance to read a > > little more about > > Blepharophimosis and found out I am not the only > > one, but I still > > feel a little 'iffy' and depressed about it. I don't > > know any other > > way to express myself, but if anyone can say > > something to enlighten > > my thoughts, that would be greatly appreciated..., I > > guess I am > > seeking empathy. > > Sorry for the lengthiness, but thanks for reading. > > i have had this my whole life...ihave had only 2 surgeries. i am now 35 and can say that this is the first time it has realyy affected me. so many people tell me how pretty my eyes are. I often wonder what they see. and then i figgure that they must know i am made in Gods image....how old are you...and why do you want to to cry. i dont understand why you are so sad you never really said why i was under the impression you were in your thirties.....so you went your whole life with out a surgery or a diagnosis? am i right? i know it seems hard now but that lady earlier is right...go sit in the childrens ward of a hospital...you will be ok...i promise. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2008 Report Share Posted February 9, 2008 Hi Tameria I also have BEPS and so does my 6 week old daughter. Like you I have only discovered there is a name for it and we are not alone. I think I hopped on the same rollercoaster of emotions that you are riding! Now that it's all sinked in I'm so happy, I keep telling my husband I want to do Kartwheels (he thinks I'm crazy!!). Finding out we are not alone and being able to give it a name is just fantastic. I looked at your photos and you are gorgeous! I believe being a little different has made me the person I am today and I hope this support group brings you the joy that I am feeling. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2008 Report Share Posted February 11, 2008 > > Hello to all that are reading this, I am a new member and just found > out today that I have Blepharophimosis syndrome. It kind of feels > weird saying that, but I grew up thinking I was adopted. I remember > questioning if I really did belong with my family because I never > seem to fit in. My apologies, my name is Tameria, and I am a full- > blooded Native American woman from the United States (Arizona) and I > am still skeptical about what I found out earlier. > It all started with me getting my annual eye exam (well, way before > then - infant/toddler time frame - but in this case, this year) then > I was referred to ophthalmology. As soon as I walked in the doctor's > office, he just stared at me...studying me for a moment (mind you, > I've always been self-conscious about my eyes) so I felt a little > bit (okay, a lot) of awkwardness. The first words to come out of his > mouth were, " I know what you have. " I was stunned and for a moment, > confused. He pulled one of his many medical books, showed me > pictures and read out loud what Blepharophimosis and BPES is. After > that, all I remember was having a huge lump in my throat and trying > to hold back the tears. I don't know what I was feeling, but I > wanted so bad to cry. Luckily I was able to keep my composure. > Now that several hours have passed and I had time to think about it, > I feel some what the same. I mean, I still want to cry, but at the > same time, another part of me is relieved to know that a lot of > other questions have been answered (besides, where is crying going > to get me?). Right now, I believe I am uncertain of what's supposed > to happen next. Yes, I did get a chance to read a little more about > Blepharophimosis and found out I am not the only one, but I still > feel a little 'iffy' and depressed about it. I don't know any other > way to express myself, but if anyone can say something to enlighten > my thoughts, that would be greatly appreciated..., I guess I am > seeking empathy. > Sorry for the lengthiness, but thanks for reading. > Hi, My name is Leonie, and my 18 month old son, Dominic has BPES (partial penetration I think the doctor called it as Dom has only 3 of the four major recognisable traits). I can offer empathy in a way, though it is not actually me who has it. Dom has just had his 'Frontalis Sling' op 12 days ago as his eyelids were almost shut and he had severe sight issues. Another member replied to your post regarding his visits to the childrens hospital and the children who have other severe issues and I know it has always helped me to deal with Doms's problems to realise how much worse it could be. Dominic also has Hydrocephalus (water on the brain) and has had two brain surgeries. He now has a shunt in his brain. Most of the worries I have concern this and when people ask me how I feel about the BPES issues I can honestly say that now my son can actually see, the cosmetic side of things pale compared to his 'real' problem of the Hydrocephalus. Give yourself time to absorb all that you have just learned and maybe 'spoil' yourself a little. Remember you are YOU not the diagnosis. Definately use this valuable resource (I have found this forum invaluable), read up (but NOT the outdated rubbish you sometimes come across on the net) and then pick yourself up and soldier on!! Best of the best wishes to you. Leonie & Dominic Quote Link to comment Share on other sites More sharing options...
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