With Christmas only 2 days away I thought I'd shed some positive light and take a moment for gratitude.
It might sound crazy at first, the title of this post. Behchet's making me GRATEFUL?? But alas, it is true. Although it is not something I would wish on anyone and there are times I curse its mere existence, I have also found great strength and positivity in dealing with this disease.
Bechet's makes me grateful for;
1. Good days. Days when I am up off the couch. Days when I am not in pain. When I have energy and can work and play and clean my house and laugh with my kids. Days that I took for granted before. Now, I take not one of those days for granted, and I am grateful to my core for each moment of them.
2. Eating without pain. My, how people take this for granted. And why wouldn't you? It should be "normal" to eat without pain. But for me, it's been five years of hell with mouth ulcers. Now that I've been diagnosed, and am treating things, I have had some days of pain-free eating. GLORIOUS! Every bite I take I rejoice. Seriously. Chewing, swallowing, tasting food ~ what a spectacular thing! And one I am grateful for every single time I get to experience it without pain.
3. My eyesight. The scariest part of the diagnosis for me was when I learned that Behchet's can make you blind. I immediately began to think of all the things that would be stolen from my life if I could not see. All of my hobbies ~ photography, scrapbooking, reading, writing, movies. All the things I love to do and would no longer be able to. But worse, the thought of not being able to look at the faces of the people I love. Those faces we take for granted because we see them every day. My beautiful children. Now, I look at their faces with care. I look at them not fleetingly, but with meaning and intent. I adore and try to memorize their features. Just in case. And I have once again begun to marvel over those faces, like I haven't since they were infants.
4. Choice. I am so grateful that my health is not completely out of my hands regardless of what life has thrown at me. I can choose what goes into my body and what doesn't. I can choose to be proactive and learn and experiment, and take amazing care of myself, and fight this god damn disease tooth and nail, and refuse to let it win.
5.My country. I am so grateful to live in Canada and have free health care and access to the things I need in order to get well. If I wasn't a patriot before (and I was!) I certainly am now.
Take some time this season to think about this ailment in a different light. Has it changed your life in any positive ways? Are you stronger, smarter, healthier in any way because of it? I hope for all of you, that bearing the burden of this sometimes ruthless disease has brought at least some positive change or experiences into your lives.
Behçet's disease promises not to agree what you said about the disease have more severe cases. Behçet's meaning (Turkish beauty, and sweetness of geniality has the meaning of) the course of the disease in people resume in this way. Patients with Behçet in 2013 will be the year, do not be so pessimistic, Behçet's disease research in the Department of Rheumatology, Faculty of Medicine, Istanbul Universities anchor made ??of new drug trials. This synergy will be spread all over the world trust in Turkey with Turkish doctors only. Very close to a beautiful day I hope to share with you the news,
Happy Christmas Kat, and a healthier and Happy New Year to you and your family.
What a lovely post. I think you and I are lucky enough to have been given treatments which have helped you somewhat. I say 'somewhat' because there are days when I can hardly move, but like you, rejoice in days when the disease is not at the forefront of how I really want to live my life.
I try not to look too far into the future, not because it is so frightening about how BD will ruin my life, but because I seek methods so I can enrich the lives of my family and friends. Who wants a prophet of doom to spend time with and talk to? I am not burying my head in the sand, I am all too aware of what the future MAY hold, but nothing in the future is set in iron, or I would win the lottery tomorrow.
My wonderful mother lost her sight suddenly. She was unlucky enough to have suffered acute gaucoma to both eyes. Overnight she lost the ability to knit, sew, watch her grandchildren grow up and tend her beloved garden. To the end of her life, she never complained, but was eternally grateful for the love and company of family and friends who compensated her for her lost sight.
I think if most of us sat down and really considered our situation, we might be grateful too, for everything available to us from the medical world. We in England also have free treatment from our National Health Service. This year, the society opened 3 centres of excellence to help those who were not as well looked after as myself by Addenbrookes Hospital, Cambridge. I believe that things will get better for all of us, but all the research takes time. I hope it is not too late to help us who are sufferers now.
What a lovely, positive post! I too have BD and have had it for 41 years although I was only diagnosed 12 years ago. I've never been free of mouth ulcers, joint pain or fatigue but find by pacing myself I can manage. Having to slow down has given me time to appreciate the small things in life - the change of seasons in the trees outside my house, birds and wildlife in the garden and the fact that my 2 boys have made it to adulthood! Their early years were beyond tiring!
I have been reading the posts on this site for a while and love how supportive you all are of each other.
I wish you all a very happy Christmas and New Year.
What a great and supportive community you all are. I do not have bd but my daughter Sally (which is her real name, have her permission to use it now) was diagnosed about 8 years ago. I really appreciate the chance to share with you how you all manage and to tell you about my lovely Sal. After Christmas perhaps I can tell you a little more but for now I wish you all a peaceful, joyful and pain free Christmas and much better health for 2013. Never give up hope for a cure, it must be on the way. Love to all, Jan
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