Behçet's UK
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My new life

My new life

My name is Jennifer, I’m married with no kids. I work as a bank manager. It’s been a rough couple of years dealing and learning about Behçet’s. I have been on steroids for the past 3 years to control my flare ups and I have gained so much weight. But it has allowed me to work these past few years. I had to change my eating habits and cut out gluten for good. Then I had to take physical therapy because the steroids made my bones weak and fragile. I just hope one day I’ll feel good about myself again.

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You look great in the photo - be proud of how strong you are

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Thank you 😀

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You are not alone. The weight gain I have experienced has also made me extremely frustrated. It's a viscious circle of pain causes lack of exercise, meds cause weight gain, lack of exercise causes weight gain, weight gain causes worsening symptoms etc. However it's a price we pay to continue to work and function. I too have recently cut out gluten and I'm hoping it will bring about a difference. You look great in your photo, no one would know the struggle you are going through by looking at you so please keep positive. There is life beyond behcets 🤗

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Hi Cherie1w74

Thank you for your positive feedback. It’s nice to know I’m not a lone in this health situation but I don’t wish this illness upon anyone. Also you are right about the price of working and functioning as normal as possible. I have a weak immune system and I spent 1 week in bed because I developed bronchitis, fatigued beyond my pain, and damaged my vocal cords from coughing so much. I had pleaded with my Rheumotolgist so that she can prescribe steroids to help me get out of bed and back to normal. When you’re in bed feeling that sick you think what is going to happen especially the worst things come to mind. I couldn’t communicate with anyone unless I sent text messages even when my husband was sitting right next to me. I hold onto my faith by praying In these tough days. I hope you’re feeling well too. Keep me posted on how you are feeling too.

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Hi zpgg0698

Thanks for your reply. I'm ok at the moment, not brilliant though and I can feel the fatigue kicking in so I'm expecting the next onslaught soon. I feel much less bloated with the gluten free diet though. My immune system is also weak and my husband has a cold and a chest infection at the moment so I'm trying to avoid him like the plague! We have to make the most of the times when we feel a little better. I don't think any of us will ever feel the same as we did when we were younger though as bd seems to worsen with age and with each onslaught.

I hope you manage to have a period when you feel ok. Keep in touch x

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I have also decided to cut out gluten in the last 6 weeks, and largely avoid dairy too as i find this helps me alot

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Hi

Gluten is a challenge to remove completely but I wanna feel good about what I put in my body. Gluten has made me nauseous, bloated, major abdominal pain, diarrhea, and asthma attacks on multiple occasions. Sometimes it affects me immediately and other times it’s for the next few days. I plan all my meals and when I’m in doubt about work related breakfast or lunch meetings I take gluten free protein bars as back up. They are tasty and delicious plus I feel good. Before I go to any restaurant I look for gluten free options at the restaurant and most places do accommodate. I focus on eating protein, veggies, fruits and dark chocolate lol. Thankfully there are some options out there.

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Hi! I feel you esp the line “i hope one day i’ll feel good about myself again.” I started taking steroids 3 months ago and it really had a lot of side effects esp on my face :( there are times when i will wake up feeling bad everytime i look in the mirror because my face is just so puffy and even my eyelids are swollen

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I feel you ! Esp your line “i hope one day i’ll feel good about myaelf again.” There are a lot of days when i would wake up feelng bad everytime i see myself in the mirror because i see all the changes happening in my body bec of steroids. My eyelids are very puffy as well as my face, it’s swollen and a lot more changes.

You look great in your picture. I hope everyone struggling wth BD will be okay soon. 🙏🏻

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Hi Jennifer,

You look beautiful!

Stay strong, but be easy on yourself.

Sending well wishes!

UK

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