I can't begin to explain the past year I have has. Now only one part of my body remains "untouched". My eyes. I always say to my self if it goes to my eyes I'm gonna end it all. I am having the worst flare up anyone can imagine. I know there are a lot of sufferers out there, even you would be amazed at what I have to deal with be cause of this f...ing disease. I'll post some photos at the end of the post. The reason I'm writing this is to let go of anger and vent. I'm sorry if I sound like a mad miserable man. The truth is I'm someone who people fall in love with the second they meet me. I'm the guy who walks in the room and everyone's face lights up. Or at least I used to be. Now I get the tilted to the side (head of concern). I have always been the life of the party the ONE!!
I HATE YOU BEHCETS!!!!!!!!!
You need to get the hell out of me and burn inside one of the doctors who mistreated me!!
I want my life back. I want my looks back. I am so hot!! I remember looking in the mirror and being flabbergasted at how strikingly handsome I was. Now all I see is soars and scars. I was diagnosed 1 year ago by a neurologist who couldn't believe I had been to multiple dermatologists and a bunch of other doctors who kept misdiagnosing me and treating me for MRSA, herpes syphilis and whatever else they could pull out of a hat. I'm taking methotrexate, prednisone and Colchis and my tell count is 1700 and at 62%. And if the hiding out in my apartment weren't painful enough I have neuro behcets, behcets arthritis , behcets,meningitis , the worse is the sleep walking. I keep hurting myself in my sleep I've had so many head injuries in the past few months my skull must be cracked on every side. I wake up screaming as if someone were digging a nice into the heart of my central nervous system. As my neighbor put it " it sounds if like someone's being gutted rob"". The embarrassment and pain I feel when people look at me on the street is what's gonna be my final breaking point. I have to zoom by people on the street so they don't have even a second trouble focus in on one of my lesions. And when they do see one they give me that look. I'm sure you know it.
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I feel very poorly today now so cant find words to help. don't give up try and get better meds for pain and stuff to help you sleep. I feel better when I can sleep. I would like to hold your hand. you are still Rob. try and chat more later Jill xxx
This is a very cruel disease and it sounds as if you are really going through it at the moment. I have had behcet's for many years and cruelly 6-7 years ago I also started suffering from really bad neurological symptoms where it seemed as if my body and mind had been taken over by an alien or some mad demon. I do know just how terrifying this can be and also how badly Dr's can treat us sometimes....but thankfully it sounds as if the right one's are trying to help you now. Some of us here went for many many years before getting diagnosed and having treatment. I don't know how things are in your Country but Dr's here in the UK are becoming more and more aware of this condition.
The medications you are on will take a while to kick in and sometimes it feels as if you are never going to get better or even improve. You may have to try others before finding the best one's for you. Your poor nervous system must be in shreds at the moment and so the main thing is that you have to try and find a way to get in touch with your inner self and get rid of the anger. It will only make things worse for you as Behcet's just loves stress and anger to keep it going.
Try and speak to your Doctors about the sleep walking as Jill is right that sleep is the key to your nervous system repair. There maybe something that could help as it sounds as if you are acting out your anger in your sleep and this must be like torture for you.
Have you got any close friends, a neighbour or family member that could listen to you or maybe stay sometimes so you can sleep safely.....I remember when my symptoms were new and the fear I had because my breathing was affected. I was literally frightened to close my eyes and go to sleep in case I stopped breathing....in the end I asked my husband to sit a watch me while I went to sleep just in case I stopped breathing. He did this for me and gradually I learnt to let go of the fear and anger.
Try going out every day, even if it is to walk to the end of the road and back as you will begin to get stronger and people will get used to seeing you again. I had to do this myself as I lost the use of my legs and virtually had to teach myself to walk again.
It was then that I started to get better and face my illness head on.
You must be braver than you think to be able to come here to this forum and ask for help in the way that you have....so use your anger for grit and determination to go forward instead.
Keep talking to us if you need to vent as we do understand what it is like to lose our former self, but I can say there is still life after behcet's.
Hope some of this has helped a bit
Andrea
Hello Rob and welcome to the site, where you will find understanding, support and lots of advice.
Firstly, please don't apologise, you are expressing something that many of us understand and this is a good place to let it all out. You don't sound mad, you sound like someone who is having a crap time and you need to let it all out and get some support, many of us have done that here.
Being mistreated and misdiagnosed is sadly not unusual, particularly with sexual related conditions like Herpes.
You do now have a diagnosis and hopefully are going in the right direction to get the treatment, management and lifestyle advice that can help you to cope. Would I be right in thinking you are in Germany? Forgive me if I have got that wrong, but If it is so, perhaps this might help you: behcet.de/index.html
In the UK there are support groups and also centres of excellence with multi disciplinary specialists under one roof. I don't know what is available in Germany but the organisation above may be able to tell you.
Lots of sufferers have neuro involvement, arthritis and some have episodes of aseptic meningitis, which is treatable when it occurs.
It looks as if the way you feel about your life at the moment, your symptoms and lifestyle, need a little bit of separating out into manageable chunks to deal with. There are so many aspects to this disease- psychological and emotional effects, physical effects, pain, anger, fear, isolation and sometimes meds themselves which can cause problems.
Your post needs a considered response which will take a little time, but please in the meanwhile try and be patient. I'm not sure if we would be surprised to hear of your symptoms or see your pictures as we have vast experience between us, but do go ahead and tell us more if you wish - sharing can be very helpful.
None of us are medical specialists, we respond from personal experience, but sometimes that is enough to get you on the right road, point you in the right direction and welcome you to the club that none of wants to be in, but are all glad is here.
If you haven't done so, you may find it useful to join the Society, They have a helpline for members which you may find useful: behcets.org.uk/how-to-conta...
An aside - anyone, anywhere can read what you post - if you don't mind that's fine, but if you would prefer future posts to be read only by members of this group you can select that option before you publish your post.
P.s. I am going to directly quote Andrea here because I think this is an excellent point and I would like to emphasize it -
"You must be braver than you think to be able to come here to this forum and ask for help in the way that you have....so use your anger for grit and determination to go forward instead.
Keep talking to us if you need to vent as we do understand what it is like to lose our former self, but I can say there is still life after behcet's."
Wow thank you guys. Andrea I think you nailed it!! It's just so hard because image has always been very important me it's usually what attracts people to me and people usually aproach me and I hate it because now I feel they are staring at my soars. I work full time for Apple and have been out of work for 1 year. I live in Ny. I want to share a few pictures with you. How would I do that. It's my opinion that I must have some kind of bacterial infection in my skin in order to have these kind of soars and yes I understand that the behcets is why they look so bad But has anyone had any like these is what I want to know. Thank you for your advice this is very nice
You can add a photo through the "post a blog" button, but unfortunately each blog only allows one photo at a time. This means if you want to post more than one you will have to post more than one blog.
Click on the browse button on your blog page and trace through to where your photo's are stored and select the one you want. It will then upload to the blog.......hope this makes sense
I know what you mean about image and being the life and soul of the party because that was also me and also many others here.
Unfortunately Behcet's does not discriminate who it chooses to attack and we come in many shapes and sizes here....that's what makes joining this forum so good. We don't make judgement on what people look like as most of us have been through it as well.
My face droops and I slur my words and stutter. I have put on a lot of weight and I have a balance and mobility problem that makes me stagger. I constantly make jokes to people in public I am not drunk...but wish I was
People down my street did look at first but only out of interest and concern, but now they call out and ask me how I am doing and say how much they admire me and my determination........
......a new me has emerged and by embracing it I have found more meaningful relationships and the old me still emerges...I just have to practice it more.
Hi, I have problems with my skin (face) sores etc, One of my consultants put me on long term anti biotics,which has really helped, he said because of all my medication which reduces the immune system has caused a type of Acne.
Welcome to the Forum. I think Andrea has said it all. But (as much as you wouldn't wish this on anyone else) we do all understand. BD is a horrible illness that effects people in so many different ways. But we are a great bunch of people that are happy just to listen.
I understand about you feeling like you have lost the real you. I used to be a party animal and would be first on the dancefloor and last to leave a party. I was slim and active and always on the go or doing some sort of sport. Now I am 3 stone heavier and have no energy to keep fit and hate what I see in the mirror but I am still Angela deep down and have accepted that my life has changed but I still have the good heart and humour that I once had. Things will start looking up Rob and whenever you feel low, just let us know!!!
The face you see on my posts is about 15 years old. When it was taken I joked that it was the photo I was going to use until 80 because I felt it pictured the real me (or I suppose as I see myself). I looked in the mirror today and a different person looked back - seriously I have thought of getting rid of mirrors in the house.
It sounds a bit of a cliche but it is the person inside which counts. That's why this website is so great - we can't judge anyone by looks (which shouldn't happen anyway but unfortunately it does). I was going to say we get to know the 'real person' or perhaps a better way of saying it is we get to know each others ideas without adding a mental image to it.
It is something I have often thought about - it is a pity that people judge each other on appearance often without looking further.
When you come to terms with things you will find that your life is going to take off on a very different tangent. Obviously you have computer skills. The ones that know me will be sick of me saying this but perhaps you could set yourself up with some online consulting business - even if it is to take your mind off things.
Right ! ..... I am going to be totally up front and honest here. Okay ?
There is one part of me that wants to give you a jolly good slap and shake some common sense into you and tell you to get a grip ! Much as I would like to do to a spoilt child who is throwing a tantrum about something silly.
There is also another huge part of me that wants to cuddle you up in a blanket with your head on my chest and stroke your hair and tell you it will all be okay sweetie, Just as I would with a small boy who is upset at losing his special toy which has broken and cannot be fixed.
Neither of the above responses being the correct course of action and the mere fact that I wouldn't actually do either of them doesn't change the way it makes me feel about it all.
I find it so very brave and refreshing hun, that as a man you have come out and said what a lot of woman say so often to their friends behind closed doors. Sadly it seems, you do not have the benefit of female friends that understand this situation only to clearly and tend to talk more about these things amongst themselves and in doing so gain the very necessary support and caring that is needed at a time like this.
So..... thank you so much for sharing this part of you that is so precious and comes from so deep inside yourself. It must have taken an awful lot of angst and desperation to come forward and say out loud what many of us have said quietly to friends.
You are now among friends hun, that really do understand where you are coming from and how it is affecting you. We would all welcome any more input you have to offer and I think it will also be of great benefit to you to let it all out of your system and not lock it away inside which is very traumatic and a bad way to deal with it all.
The loss of something so very precious to you such as your stunning good looks is a very traumatic situation to face. Although many people would not regard it as something to feel so desperate about with all the other health issues you clearly have to go along with the whole scenario, it clearly means so very much to you and you are mourning the loss of this precious element of your life. You know yourself without anyone actually telling you that although it is a fabulous asset, it certainly isn't at the top of the list when it comes to losing anything health wise but when something has featured so highly in your life it will be so very hard to accept that this element is no longer going to be the perfect outward appearance you are so used to being so proud of.
We had a young lady a little while ago on here who was feeling pretty much the same as you hun and I will give you the same advice I gave her okay ?
Your stunning good looks may well be the first thing that people see that attracts them to you but this is such a fleeting reaction that you can no longer rely on to attract people to you. Within a few minutes of a conversation, people make their mind up if they like you or not and from what you have told us so far, your personality must be pretty great as well as you have remained a popular person amongst friends and still stick out as the 'one to watch' at a party.
It would be very fickle of you to imagine that this reaction from people is totally due to your appearance and I would suggest that you already have the greatest asset you could possibly have and that is a brilliant and attractive personality. Could it possibly be that this is what people find so attractive about you after they have been lured towards you by your handsome appearance ?? How much, I wonder, is actually due to a stunning smile and the way you talk to people and not so much the fact that they are swooning at your feet purely out of admiration for the demi god they see before them ??
Perhaps it is time to stand back and review what assets you actually do have and put the loss of this element that has given you the confidence you are now lacking to one side just for a bit and see how the real you fares amongst the crowds ? I wouldn't mind betting that within a few minutes you are still attracting just as many people with your personality and smile as you thought you were just with your looks.
I know from my own experiences that looks actually pays a very little part in the attraction I feel for a man and I think you will eventually realise that people are not as fickle as you first imagined they were in liking someone purely for their outward appearance. I have often witnessed that the 'fat girl' who is having a ball of a time is the most popular girl in the room purely because she is having a great time and this is nothing to do with her looks at all.
Rob hun, what I am trying to tell you, is that you are doing yourself such an injustice believing your life revolves totally on how you look. I don't know you well at all as this is the first time we have spoken and your honesty and outgoing personality is enough for me to decide that I like you already !
By all means come on here and let off steam as we all do hun, but please have a good think about what I have said and consider that you have so much more to offer than purely your pretty face. okay ? Mwah !
Take care hun and look forward to talking more with you in the future. Okay ?
You said you were worried if the disease spread to your eyes. I am now legally blind and am still hanging in there with help from my friends.
Hang in
Felicity
Hi again,
I've just had a skim read of all this excellent advice and it occured to me that somewhere recently a mens group was mentioned, but I can't find it at the moment. Not that you are obliged to join it Rob, but it may be of interest to you.
Perhaps someone will remember, or I will find it again myself. It just might be worth checking out for you, but that doesn't mean you are allowed to leave us ladies! Or the few men who we do have here. I don't think we have scared any of them off yet and we are very pleased to have them here.
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