Living With Behcet's Disease - My Journey So Far 1/3

[LeaMarie00]

I have had Behcet's for around 5 years, and was just diagnosed this week after hundreds of mouth and gallbladder ulcers, eye problems, head aches and joint pains. There aren't enough videos out there by actual Behcet's patients, thanks for making this one. It helped me feel less alone.

[On3wing3dang3la]

However, it is not legal in all states in the US so that's the reason I just can't do it. I'm not saying that I never tried!!!! Lol!! I really need to keep up with how much I type because it always cuts me off!!

[On3wing3dang3la]

Well, my doctor gave me this dental cream to but in my mouth and it numbs the ulcers completely. Your supposed to apply it after you eat but I thought that was defeating the purpose since we can't eat with ulcers. I have never gotten sick from eating but it may hit me down the road... I hope it doesn't! I'm not a pothead or anything but my doctor has told me that marijuana can help if I don't have an appetite and it could help with not getting sick after eating, for you. However, it is not l

[millwrght4ever]

when you say not there. do you mean what we call easter eggin it? (confusion,memory loss?)I have no short term memory and it seems like i get confused about where i'm at.i can follow simple steps to about 3 steps than i forget and have to be shown again.

[On3wing3dang3la]

Oh it cut me off! I'm so sorry that you have this awful disease and I hope it's gets better for you. Thanks again for sharing!

[millwrght4ever]

@On3wing3dang3la this disease sucks! i've had some form or another my whole life.and I hate the flares! I suffer from gastric paresis.(my digestive tract quits) and all i do is throw up.getting over a flare right now. my husband thought i was going to die last week. he said i looked terrible. but, if you can't eat because of the ulcers you can't eat so what am i suppose to do? a long time i felt soo alone. now i know i'm not.

[On3wing3dang3la]

Thank you so much for sharing! I also get the chills with fever. I am so exhausted all of the time and could probably sleep a whole day! I wish there was a cure for Behcets because it does get in the way with work and school. I was diagnosed this year at the age of 23 but have had symptoms my whole life. I even had a doctor misdiagnose me with Herpes two years ago, tearing my boyfriend and I apart. I am only thankful that herpes is not what's wrong with me and I'm not contagious!! I'm so sor

[millwrght4ever]

Sorry i also get this from my father your just lazy! when i was working i was working about60-70 hours a week. now they are telling me i can't work at all. but he still thinks working 60-70 hours a week is not enough. next time i'm going to tell him to fuck off. thanks for the inspiration!I get tired of people bitchin at me when i cannot even sit up that i NEED to do this and that! I want to just tell them do it yourself! good luck my friend. I'm on the abda website contact me. luckygirl1974

[millwrght4ever]

I also have bechet's and i noticed that you are wrapped in a blanket. are you always cold also? aI am wrapped in a blanket all the time. even in the summer. I thought it was just me.I told my dr. my feet and hands are always like ice! and then if i accidentally bump them they feel like they are broken in a million pieces and i want to cry!

[matiaspicer]

I have Behcet's as well. I was diagnosed in 2003 after 13 years of doctors wondering what was wrong with me. I appreciate your courage to put this out there. We all need to talk about it more and raise awareness so that we can get help with medications. I was a teacher for 18 years, and had to resign because I could not handle the stress. My body was just too tired to get up everyday and teach. I have lost many things because of this illness. Thank you for posting the video.

[JamTartArt]

@matiaspicer

you're very welcome. thank you for taking the time to watch and comment. i hope you've had some kind of remission since diagnosis

[SuperRosie1974]

i have had this disease for 16yrs now,the worse bit is is for people to understand it more,thaks fkor this x

[JamTartArt]

@SuperRosie1974

thank you for taking the time to comment. 16 years... jesus =( hopefully you've experienced some kind of remission in that time

[curlyshaibani]

i find this ever inspirational. i have had Behçet's Syndrome for 2 years now. My friends don't know about it; so It's been really hard to cope. I'm just glad you posted this, i hope everything is good with you.

[JamTartArt]

@curlyshaibani

and i'm glad that people are actually finding something worthwhile in this video =D thanks so much for watching. i hope you find remission soon if you havent already =)

[paulmlg2010]

my friend has neuro- behcets. thank you for posting this, good luck, i hope everything is okay for you

[JamTartArt]

@paulmlg2010

thanks dude. i hope your friend is dealing with the illness okay =)

[HCIKFS1]

Thanks for having the courage to share! Know that you are being heard and that your viewers care!

[JamTartArt]

@HCIKFS1

thank you so much. that means a lot to me. for me this was a powerful and courageous statement and shows me for how i truly am without anything to hide behind. thank you so much for your support once again.