I felt that after reading so many funny and helpful blogs by people such as: Devonshiredumpling - Andrea - Tigerfeet - behcetsandbeond and to everyone else who I've missed [ or miss spelt!] .
I would just like to say a big Thankyou to you all !!!!
I read most of the blogs for help and just to make me laugh. I love to read the banter between you all when I'm feeling incredibly angry and in pain.
I think that without this site to read I'd go mad !!! - [ more barking than normal].
I was officially diagnosed 3 years ago after feeling like I was waisting every doctors time, no-one seemed to realise or believe how many symptoms I had at any one time. After reading your wonderful blogs - you all seem to have had the same problem with Dr's as me.
Although I'm still in denial my body's not.
I've never been the type of person to let anything get me down.
but this just ' Takes the biscuit '!!!!
thanks to you all and please excuse the 'english' I'm slow from meds at the moment : )
Written by
myfabgarden
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Hi - I feel the same way. Being able to laugh is very important and also to know we are not alone with this problem.
My little funny - a doctor with English as a second language was taking my history a couple of days ago and asked me about 'incestry' in my family background (I was thinking this is a new twist to behcets). Fortunately we both woke up fairly quickly that she was asking about ancestry!
Yes that did happen a lot 100 - 200 years ago. Thank goodness it wasn't what she meant - wouldn't liked to have gone down that track.
I love to read happy, positive and funny posts. Whatever we post, It's great that we can be ourselves; up, down (and flying around on some meds!) and know we won't be judged, we will be supported and understood, and there is a connection between us that cannot happen with a non BD sufferer.
Too often we are seen as 'just patients' or defined by our illness rather than our personalities, abilities and all the things we have to give. Sympathy has its place, but empathy encompasses so much more.
Experience can be useful, but new ideas and input from younger BD patients and their families is invaluable. I'm still learning.
It's always nice to be appreciated so thank you for your thank you!
Whatever has been taken away from us with this condition....the last thing to go is my sense of humour and I notice this is the same for many of us here.
Thanks for your comments and great little funny lesleyg.
I'm in a bit of an angry mood at the moment though ~ just saw orthopaedic guy who seemed to take no interest at all in what I was saying. He just said 'right steroid injections will sort this problem' I didn't agree. I've had all of that scary stuff before, it works for a few days and is far to painful~ why give me more pain? # It's now come down to my GP to say if and what meds I can have # As you can imagine i'm not avery happy bunny at the moment and needed to 'hack' out the words and give the computer grief instead. : {
Unfortunately a lot of us have been there so know what you are going through with Dr's that don't seem interested....it makes me want to spit as well.
I have had steroid injections for inflammation spasticity and trigger points. I had 2 -3 sessions with loads of injections from my neck and right down my spine [all an inch appart] and right down to my bottom. Must have been around 30-40 injections in each session....pretty freaky but I was desperate for them to try any solution at the time as my head was permenetly on my shoulder and had spasms all down the lefthand side of my back, literally pulling me off balance.
Can't say I found them too painful and they did sort me out for quite some time...I don't know what the consultant orthopaedic guy was suggesting steroid injections for....but it might be worth talking it over with your GP.
I think a sense of humour is essential to dealing with this disease. Laughter is always the best medicine, and I try to adhere to this.
When I gave birth to my daughter, I tore quite badly (sorry to those who are a bit
squeamish), and the doctor had be summoned to sew me up. He had such a miserable face and was so slow, I asked (after being a little light headed due to all the gas and air I had inhaled) if he was doing lazy daisy or french knots down there! He just grunted, and I found that funny too!!
I have been in the medical profession, and there is so much humour, I hardly know where to start telling you about it.
Mind you, there are times when I find Behcet's disease far from amusing.
So sorry to hear what you've been through ~~ I am 'Amazed ' just how you keep going!! WOW
I think you just have to be super human as I've had a lot of treatments and surgery over the years [ not a nip tuck + face lift that's most needed yet! }.
Thanks for the support though ~ why do we all have to deal with Docs that don't want to know?
The ortho guy was just suggesting another round of hip and back steroids ~ the other lots only ever worked for at most two weeks. I just can't cope with all of the extra pain . I have managed to learn to walk again with a mixture of drugs and being at home with my own four walls to hold onto. I think a lot of its pure will power and a sense of humour plus keeping away from the hospital for as long as poss.
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