ButterflyWarrior

30d

Hi there! I have been diagnosed with Lupus officially since this year but has had the Undifferentiated Connective Tissue Disease diagnosis since last year. I have also been diagnosed with GAD for about 2 years. I truly now understand what a flare up is... one day you feel perfect and then the next I just can't get out of bed. my fiancée is kinda supportive but also doesn't know what it's like to have a headache (he's one of the lucky ones)

Headache

Systemic Lupus Erythematosus (SLE)

acute lethargy

Methotrexate

Hydroxychloroquine

Anxiety (Including GAD)

Cyclic Vomiting Syndrome (CVS)

View all
  • Triple_C

    30d

    Oh my friend, I have Lupus too… for about 12 years now and I completely understand what you’re feeling and going through:)). I too started with UCTD and it took forever for my Drs to figure it out, so frustrating. I woke up every morning vomiting violently for years, too many!! But I’m still alive and kicking 😂 but it’s such a horrible disease 🦠 that’s so misunderstood by so many people sadly… but my body has been destroyed by this yucky 🦠. It’s completely turned my life upside down. Im also handicapped due to steroid use over the years and my bones are literally turning to dust. I’m now 47 years old and I feel a lot older 😂!! But my Drs finally found something,Acthar Gel and it’s saved my life!! Please talk to your dr about this medication….it’s the only reason why I’m still alive. Plus I went through 14 rounds of chemotherapy when I was first diagnosed with Lupus. That saved me too. My chemo med was called Cytoxin and it wasn’t so bad, still rough, but Soo worth it!! I’ve suffered from horrible horrible anxiety since I was 5 years old and I don’t wish the feeling of anxiety on ANYONE!! I have stomach problems too. My bowels are damaged due to a previous slip and fall accident so everything is hard for me but my faith in God and my kiddos and my 6 month old grandson are keeping me going!! My Drs only gave me 6 months to a year to live and that was 12 years ago and im so blessed to b able to see my kids and my grandson grow up!! Hang in here kitten, it’s a really rough, cruel disease and im here for u if u ever want to talk, ok?!! I really mean this!! Im on FB under Breann Vanfleet and you can message me anytime u feel u need support or just someone to talk to about everything!! Please feel free to use me because I didn’t have anyone who understands what im was really going through and I’d love 💕 to help you if I can!! Have a blessed day and hopefully you’ll take me up on my offer!! I’m here for ya if u ever need, k ❤️ 🤗 💕

  • ButterflyWarrior

    29d

    Oh ny! You truly been through it all! You are such a brave soul. Anxiety has ran in my family on my mother's side for generations. 2018 is when it was truly getting out of control without help. And 2020 when I went to my doctor to finally get help for it they also diagnosed with PTSD as I was part of the medical staff at the hospital where the Douglas Shooting Victims were taken. Fast forward to about 2019 and I'm still having symptoms of unexplained weight loss and fatigue and night sweats at the age of 28.. after thyroid testing and numerous blood work I went to my OB/GYN thinking it was related to my IUD and she actually ran the ANA bloodwork and told me she wanted me to see a rheumatologist. She started me on the Hydroxychloroquin. Then this year I started developing inflammatory arthritis and then she gave me the official lupus diagnosis and started me on methotrexate. It has helped so much. But these flare ups when I get them seem to knock me down and out but I gotta push through it. My job is thankfully so understanding and will make adjustments for me. But sometimes I just feel guilty that I can't do my job on my own.

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