Venting: Just want to vent. I am tired of... - Behçet's UK

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Venting

Stm252 profile image
9 Replies

Just want to vent. I am tired of feeling sick. I just took another drop on the prednisone. And I am in so much pain. Having breathing problems and fatigue back in full force. I just want my life back. The doctor just started me on meds for Bechets specifically so I am hoping things will start moving along. Just feel disgruntled, sad, and frustrated. I want to be able to easily play with my little one, enjoy time with my husband and we able to work. It's all a big struggle.

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Stm252 profile image
Stm252
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9 Replies
Frustrated2 profile image
Frustrated2

It feels good to ven!!

How long have you been on the prednisone?

Did you know it can make you sad and or angry and if you are doing albuterol (breathing treatments) it will only add to that feeling.

I’m right there with you I’ve been in a constant outbreak since November and awaiting a Firm Diagnosis for Bechet’s. I see a rheumatologist this week. I’m praying for diagnosis!!

Hoping you start to feel better soon!

Stm252 profile image
Stm252 in reply to Frustrated2

Been on the prednoisone since December. I actually haven't felt any mood effects from it (that I have been aware of). Just recently been hitting me. I think it's setting in that I have a chronic condition.... Good luck with your diagnosis!

Frustrated2 profile image
Frustrated2 in reply to Stm252

I know it’s rough to be have a condition especially when you see what it can do!

I’m on the other spectrum I will be thankful to finally find out and Be able to treat it for what it is! I’ve been dealing with this for 28 years!

If you can go back and read through some of my messages with others. We’ve been bouncing back different things we do eating/health wise.

I will share this again because I believe it!

Hope stands for

H- hold

O - on

P- pain

E- ends

Repeat that and believe it!!

Good luck!

Stm252 profile image
Stm252 in reply to Frustrated2

Cool acronym! And I completely understand wanting a diagnosis. I have/was so relieved. Not putting a name to something is extremely difficult. Going from doctor to doctor. Many thinking things could be psychosomatic. Many just having no idea how to help. So I really understand that insatiable need to "know." That being said I am also learning this disease state is about letting go of expectations. Every day is different. At least for me. I have a very high paced difficult job and now I am learning to re adjust everything. So be it. Lots of lessons. Keep us posted.

rooser1 profile image
rooser1

been there boo. keep sleeping. you cant waste the little energy you have now on being angry. force yourself to think positively, even though you don't "feel" it. itll help. WE ARE HERE for you!

xoxo

its one day at a time. <3

Stm252 profile image
Stm252 in reply to rooser1

Thanks so much!

Frustrated2 profile image
Frustrated2

I agree many doctors have made me feel bad shit crazy! Even some of my coworkers, so to have a diagnosis will be nice. Has anyone had the lesions biopsies? I had another outbreak and they are sending me to dermatologist today to get one.

Stm252 profile image
Stm252

Having a supportive doctor who 'gets' makes all the difference. Seriously. I have never had a biopsy. At this point they are treating the disease hard bc it hit me very fast about a year ago and everything went to pot basically.

najeebo profile image
najeebo

I know exactly how you feel. I think I mentioned the zero carb animal based diet that helped me so much before, right. I wish someone had told me about it years ago.

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