Why is it......

[Jennie-Meg]

That it is so much easier for me to explain to you all about what happens in this funny old body? I've learnt more in a couple of days from your shared experiences, descriptions, and experiences than I could ever believe. I have found reassurance and confirmation of suspicions and above all I have lost the feeling of being an oddity. I've explained to you things I've never been able to convey to the medical profession (and for my sins I was one of them, boy has this been a learning curve!)

If doctors, nurses, and any one involved in the treatment of the big B read the blogs posted, they would have a far better understanding of what Behcets is and it's effect on those who have it, their family and friends.

Medical guidelines for questioning a patient and taking a history are far too limited, you are interrupted while explaining something and the conversation veers off in another direction, ( I sometimes think this a deliberate ploy by the doctor to get off the matter at hand), but on these blogs, descriptions and answers are clear and totally understandable.

All specialists and GP's treating the Behcets should spend a little time (which I know is precious, when they have to also treat so many other conditions), reading these blogs. It would teach them more about their patients condition than all the courses they could attend.

I'd love to present each and every practitioner who deals with us with a small file of selected blogs, the ones that really explain succinctly the most about how "B " presents in us and it's effect on us. Impractical, I'm sure, helpful, definitely . Would it be received well? Absolutely not, but one can hope, can't one? Many years ago after I was first diagnosed a well meaning medic said to me " You are lucky, it's hardly anything at all compared to something like Parkinson's ." To me you cannot compare Behcets with any other disease, NO disease is good, there are more obviously debilitating conditions, there are much less harsh illnesses that get much more attention, but all have to be considered individually, the effect they have and the way that whatever condition is being considered affects the patient medically, physically, socially and mentally. Also the impact on family has to be considered, life limiting conditions have far reaching effects.

I am a self confessed dinosaur, I like the bygone age where technology was only a distant thought, I have berated the over dependence on mobile phones, PC's, the Internet, and all the other things modern technology gives us, but I'm delighted to admit I'm wrong, at least in that because of technology, patients like us have a place to discuss, explain and learn about something that we share and that affects us so much. It also brings to the medical world knowledge through first hand experiences, not just a textbook explanation.

I'm still a bit anti the intrusion into our lives that so much modern technology causes, but I am so grateful for finding this positive side of something I was so anti about. But I am still at a loss to understand why it is so much easier to talk to comparative strangers so intimately about so much through it. But I am really glad I can.

[devonshiredumpling]

Jennie, my friend, you are in very good company, in terms of your dinosaur tendencies, your ill-spent youth within the NHS, and your delight at discovering you're not as odd as you at first thought.

However, should you ever embrace the new world a little too closely and lapse into text type you will be removed from more than one Christmas card list.

Glad you're happy to be here

Di

[Jennie-Meg]

No danger there, I am a wordsmith at heart, and really do not understand text speak. Find morse code easier than text language! Words are beautiful and I love their correct usage. But I guess that really does put me back into a prehistoric world. My only real shortcut that you will frequently see is CYH (consider yourself hugged), does this meet with your approval? Xxx keep smiling dear friend. Xx

[Hidden in reply to Jennie-Meg]

Di and I, me 'n Di, us two... oh blow it, I am trying to say that we are wordsmith's too but sometimes befuddled brains and too much time spent in the company of teenagers can affect wot we type, innit. That and the painful fingers, dodgy eyesight and quickness of abbreviation, makes it well sick to be able to use modern speak sometimes. Gotta go with the flow bro.

Now I have the song 'Consider yerself' playing in my head. Darn.

[Hidden]

Jennie, I would imagine the feeling you can talk to us is that you may have had difficulty getting anyone to take you seriously outside the BD world, and even those who try cannot always understand.

Regarding informing the medical profession, you could print off some of the factsheets, highlight things that apply to you, give them to each professional you see and even if they don't have time to read them then, ask for them to be put in your notes, and at each subsequent visit ensure they are moved to that day's appointment session so they are always current and relevant.

You can also keep a concise diary of your symptoms, taking pictures of anything that may help (the one I gave them of me eating chocolate didn't help much ) and note any questions you have prior to each appointment. You can then ask to go through this. Keep it concise, one typed question can lead to further discusssion.

Fortunately there are now many medics who do understand, who listen and who are prepared to learn. Last week I had a pharamacy review and the Pharmacist was intrigued by my symptoms and how they are treated. He said he would like to know as much as possible. I dropped off some Society info the next day and he is going to give all his staff a copy and keep it on file.

When I was in hospital on holiday a few years ago I was asked if I minded if other staff came to see me and learn. That was fine with me. It was a very small hospital and they even brought in medics from other hospitals. They thanked me for teaching the something none of them knew. I think it's important to take on board that we cannot expect them all to know everything, but it is reasonable to expect them to find out, or to admit that it is beyond their expertise and refer to someone more suitable.

Sometimes, you just have to politely offer or ask and it's surprising how often they do want to know.

On a different tack, I would suggest that if you DO post about intimate and personal things, you may want to make your post exclusive to this group.

I never lost the feeling of being an oddity, funny that

[Jennie-Meg]

THANKYOU. Funnily enough the one profession who have shown great interest and a thirst for knowledge has been my ophthalmic practice. They have a huge thirst for every article the Society publishes and pass them on to their other branches.

You are not an oddity, I have decided we are all just SPECIAL and unique, not odd! :). Thank you again.

[Jennie-Meg]

Better hearing 'Consider yourself' running through your head than the Wombles tune that the person next to me on the bus had as their ring tone aargh ( it won't go away!)

Please don't fret about befuddled brains and swollen fingers mistyping words it can lead to making me laugh all day. Oh happy days to us all.

Am off on my travels for a few days, so I'll give you all some peace now (I can hear the sighs of relief), look after yourselves, please. Love, hugs and everything that is good to you all.