Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 Hi Jo, I just have to set you straight girl!!! First of all... You are NOT whining!!! Not at all!!! Please stop apologizing, there is really no need to!!! What you are doing, is just sharing with your peers. Has nothing to do with whining at all. It is really just venting a bit (not even that much!). And we all need that. It is _healthy_ for you to share this with others!!! No wonder you get scared, who wouldn't??? To be honest, it would be much more odd if you didn't feel scared when this keep happening. Not that I mean that there's a reason to be really worried, that is not what I mean at all (I don't know much about it), but when new and weird things keeps happening, it is just natural to feel a bit freaked out about it. And then the best thing you can do, is to share with somebody else. And there's nothing better than turning to this group. This is the place where you can find others who know exactly what you are talking about, so to come here when these things happen is about as constructive as it can get, if you ask me. We all need to vent sometimes. And it is so good for you. Don't let these thoughts bottle up inside, that is not good for any of us, that is for sure. And also for the relationship to other people around us, this is really a good thing, because we have a good place to get things out of our system, so that we don't need to take it all out on our family and friends, who may not even be able to understand that much anyway. Having such a place to come with our daily challenges and worries, makes it easier to keep the communication with others close to us at a constructive level. We have no need to let everything out on them, but can keep the information we share with them on an informative level which just makes it so much easier for them to understand and relate to some of what we are dealing with, in a way where they don't feel that we are whining or something like that. On top of that, another good thing about coming here, is also that the people here are a wealth of information, experience and knowledge which we all benefit from. When we come here and share, there's always somebody who understands and can engage in sharing how they handle things, ideas they might have regarding what you maybe can do etc. - so it even means such a huge difference in that we can find good ways to handle things which we would have have been able to figure out on our own. And we all know how little the doctors often can help... You are no " fraidy cat " !!! Not at all!!! I really don't think you need " brave pills " either, you are already amongst the bravest there are. Honestly!!! Hey, look around you... How many people your age do you see that handle the things you handle on a daily basis? Not that many, right? When I read your postings, I see the postings of a really mature young woman who have insight which not that many young people have. Tee-hee... I'll step down from my soap box now... But I just had to speak up... BTW, I am really behind on postings... How is your doc troubles going? I really hope you have found yourself a new doctor who gives you the respect you so much deserve... Nobody deserves being treated the way you have been treated by your doctor. It is great that you are standing up for yourself and won't take it anymore, because nobody should have to endure what you did with your doctor. It is tough enough to live with EDS, you sure don't need your doctor to add to the challenges in your life!!!! I was thinking of a couple of things... Did you ever try those creams you can use on bruises to make them go away faster? I just remember that I heard from people with VEDS that using a cream like that might help when having that kind of spontaneous bleedings in the legs... I am sure somebody here can tell you about their experiences with these if you haven't already tried it... I don't think any of the ones I heard mentioning it before actually had the skin burst and let blood out though. Are you on Vitamin C to help for the bruising too? Seems like some find that helpful... hugs, Aase Marit Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 Hi Jo, I just have to set you straight girl!!! First of all... You are NOT whining!!! Not at all!!! Please stop apologizing, there is really no need to!!! What you are doing, is just sharing with your peers. Has nothing to do with whining at all. It is really just venting a bit (not even that much!). And we all need that. It is _healthy_ for you to share this with others!!! No wonder you get scared, who wouldn't??? To be honest, it would be much more odd if you didn't feel scared when this keep happening. Not that I mean that there's a reason to be really worried, that is not what I mean at all (I don't know much about it), but when new and weird things keeps happening, it is just natural to feel a bit freaked out about it. And then the best thing you can do, is to share with somebody else. And there's nothing better than turning to this group. This is the place where you can find others who know exactly what you are talking about, so to come here when these things happen is about as constructive as it can get, if you ask me. We all need to vent sometimes. And it is so good for you. Don't let these thoughts bottle up inside, that is not good for any of us, that is for sure. And also for the relationship to other people around us, this is really a good thing, because we have a good place to get things out of our system, so that we don't need to take it all out on our family and friends, who may not even be able to understand that much anyway. Having such a place to come with our daily challenges and worries, makes it easier to keep the communication with others close to us at a constructive level. We have no need to let everything out on them, but can keep the information we share with them on an informative level which just makes it so much easier for them to understand and relate to some of what we are dealing with, in a way where they don't feel that we are whining or something like that. On top of that, another good thing about coming here, is also that the people here are a wealth of information, experience and knowledge which we all benefit from. When we come here and share, there's always somebody who understands and can engage in sharing how they handle things, ideas they might have regarding what you maybe can do etc. - so it even means such a huge difference in that we can find good ways to handle things which we would have have been able to figure out on our own. And we all know how little the doctors often can help... You are no " fraidy cat " !!! Not at all!!! I really don't think you need " brave pills " either, you are already amongst the bravest there are. Honestly!!! Hey, look around you... How many people your age do you see that handle the things you handle on a daily basis? Not that many, right? When I read your postings, I see the postings of a really mature young woman who have insight which not that many young people have. Tee-hee... I'll step down from my soap box now... But I just had to speak up... BTW, I am really behind on postings... How is your doc troubles going? I really hope you have found yourself a new doctor who gives you the respect you so much deserve... Nobody deserves being treated the way you have been treated by your doctor. It is great that you are standing up for yourself and won't take it anymore, because nobody should have to endure what you did with your doctor. It is tough enough to live with EDS, you sure don't need your doctor to add to the challenges in your life!!!! I was thinking of a couple of things... Did you ever try those creams you can use on bruises to make them go away faster? I just remember that I heard from people with VEDS that using a cream like that might help when having that kind of spontaneous bleedings in the legs... I am sure somebody here can tell you about their experiences with these if you haven't already tried it... I don't think any of the ones I heard mentioning it before actually had the skin burst and let blood out though. Are you on Vitamin C to help for the bruising too? Seems like some find that helpful... hugs, Aase Marit Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 I don't know when this post will show as my last posts seem to have taken 12+ hours to show up (weird HUH!!!). Anyway. Jo, No wonder you are scared I would be crying and calling an ambulance if it happened to me, I would be TOTALLY freaked out. You are NOT a whimp at all and you are one of the strongest people I know who has had to come to terms with so much in such a short time. You really need to get this checked out though and get your iron levels etc checked to make sure this isn't leaving you aneamic. Maybe they could try some of the factor stuff they use in hemophylicas (sp?) who bleed into there joints etc to see if this helps prevent the internal and external blleds. Surely this bleeding into your joints can't be good for them and must be so incredibly painful, not to mention looking down to see pools of blood surrounding you. Can you call the Prof. and ask for suggestions as your upcoming surgery is very soon and you don't want to go into it scared and aneamic etc. Good Luck and here is hoping that this bleeding issue stops soon (I think you also need to get the VEDS biopsy done Jo, just to rule VEDS out, so that you have one less worry on your mind (because if it was me, this woul dbe the BIG worry on my mind, Do I have VEDS???). Good Luck my friend and here is hoping that the bleeding has stopped (make sure you tell Mac about this recent episode and if he doesn't already know abou the past ones too as you don't want him inadvertantly starting a bleed by knocking your wrist etc while operating on your shoulder). Stay in touch OK. Your (worried) friend Sharon > Sorry for the whine but I'm really scared and just need to vent. I've > just had a really big bleed from my right leg again. I've been having > these weird " spurters " where for no reason my vessels burst and bleed > into both surrounding tissue/joint and most oddly externally out > through the skin too, for several months now. I've kind of gotten > used to them a little but tonight has really freaked me out. I simply > crossed my legs, felt a big pop and before I knew it there is blood > pumping everywhere from a hole in my leg. > > I've finally managed to stop the bleeding with a cold compress, but I > and my bedroom now look like a scene from a horror movie. My Dad is > actually cleaning up the puddle I left in the carpet. > > My leg is black and blue and throbbing as the vessel is now > ballooning up and the blood is leaking out into my calf muscle and > knee joint. I feel such a wimp complaining about this, but it hurts > so much I could just cry. I already have a small aneurysm in my wrist > as a result all the bursting and ballooning, I'm terrified the same > thing is going to happen in my leg too. > > Sorry for being a real 'fraidy cat - maybe one day Santa will bring > me those brave pills I keep asking for. Thanks for listening. > > Love and hugs....Jo > xxx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 I don't know when this post will show as my last posts seem to have taken 12+ hours to show up (weird HUH!!!). Anyway. Jo, No wonder you are scared I would be crying and calling an ambulance if it happened to me, I would be TOTALLY freaked out. You are NOT a whimp at all and you are one of the strongest people I know who has had to come to terms with so much in such a short time. You really need to get this checked out though and get your iron levels etc checked to make sure this isn't leaving you aneamic. Maybe they could try some of the factor stuff they use in hemophylicas (sp?) who bleed into there joints etc to see if this helps prevent the internal and external blleds. Surely this bleeding into your joints can't be good for them and must be so incredibly painful, not to mention looking down to see pools of blood surrounding you. Can you call the Prof. and ask for suggestions as your upcoming surgery is very soon and you don't want to go into it scared and aneamic etc. Good Luck and here is hoping that this bleeding issue stops soon (I think you also need to get the VEDS biopsy done Jo, just to rule VEDS out, so that you have one less worry on your mind (because if it was me, this woul dbe the BIG worry on my mind, Do I have VEDS???). Good Luck my friend and here is hoping that the bleeding has stopped (make sure you tell Mac about this recent episode and if he doesn't already know abou the past ones too as you don't want him inadvertantly starting a bleed by knocking your wrist etc while operating on your shoulder). Stay in touch OK. Your (worried) friend Sharon > Sorry for the whine but I'm really scared and just need to vent. I've > just had a really big bleed from my right leg again. I've been having > these weird " spurters " where for no reason my vessels burst and bleed > into both surrounding tissue/joint and most oddly externally out > through the skin too, for several months now. I've kind of gotten > used to them a little but tonight has really freaked me out. I simply > crossed my legs, felt a big pop and before I knew it there is blood > pumping everywhere from a hole in my leg. > > I've finally managed to stop the bleeding with a cold compress, but I > and my bedroom now look like a scene from a horror movie. My Dad is > actually cleaning up the puddle I left in the carpet. > > My leg is black and blue and throbbing as the vessel is now > ballooning up and the blood is leaking out into my calf muscle and > knee joint. I feel such a wimp complaining about this, but it hurts > so much I could just cry. I already have a small aneurysm in my wrist > as a result all the bursting and ballooning, I'm terrified the same > thing is going to happen in my leg too. > > Sorry for being a real 'fraidy cat - maybe one day Santa will bring > me those brave pills I keep asking for. Thanks for listening. > > Love and hugs....Jo > xxx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 Jo As I have learned from this list ...we are all here to listen and never apologize...you are not whining.I am so sorry to here of your troubles. What does the doctor say that this is and can they do anything about it?? Betty Bleeding again :-( > Sorry for the whine but I'm really scared and just need to vent. I've > just had a really big bleed from my right leg again. I've been having > these weird " spurters " where for no reason my vessels burst and bleed > into both surrounding tissue/joint and most oddly externally out > through the skin too, for several months now. I've kind of gotten > used to them a little but tonight has really freaked me out. I simply > crossed my legs, felt a big pop and before I knew it there is blood > pumping everywhere from a hole in my leg. > > I've finally managed to stop the bleeding with a cold compress, but I > and my bedroom now look like a scene from a horror movie. My Dad is > actually cleaning up the puddle I left in the carpet. > > My leg is black and blue and throbbing as the vessel is now > ballooning up and the blood is leaking out into my calf muscle and > knee joint. I feel such a wimp complaining about this, but it hurts > so much I could just cry. I already have a small aneurysm in my wrist > as a result all the bursting and ballooning, I'm terrified the same > thing is going to happen in my leg too. > > Sorry for being a real 'fraidy cat - maybe one day Santa will bring > me those brave pills I keep asking for. Thanks for listening. > > Love and hugs....Jo > xxx > > > > To learn more about EDS, visit our website: http://members.rogers.com/ceda2/ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 Jo, You are being no baby!! If it were me, I would be scared and worried also as you should be. What have the doctors said? I remember reading about it before and am sorry that I can't remember. It sounds like this is something that should be taken seriously to me. Please let us know how you are doing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 Jo, I think you absolutely need to know why this is happening! It would scare me too! Is there another doctor you can go to? Love Lana Bleeding again :-( Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2004 Report Share Posted April 9, 2004 Jo - What do your dr's say about this? Have you posted that before? What are they doing about it? It seems to me very strange that you are at home, and this keeps happening. Are they doing anything to stop it? Do they know what's causing it? I don't know how you handle it. You must be a very strong woman. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2004 Report Share Posted April 9, 2004 Jo - What do your dr's say about this? Have you posted that before? What are they doing about it? It seems to me very strange that you are at home, and this keeps happening. Are they doing anything to stop it? Do they know what's causing it? I don't know how you handle it. You must be a very strong woman. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2004 Report Share Posted April 9, 2004 Jo - What do your dr's say about this? Have you posted that before? What are they doing about it? It seems to me very strange that you are at home, and this keeps happening. Are they doing anything to stop it? Do they know what's causing it? I don't know how you handle it. You must be a very strong woman. Quote Link to comment Share on other sites More sharing options...
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