Hi there, I’m new here. Diagnosed in July this year, and really struggling to manage everything. I’m behind in every aspect of my life right now. My mentor and friend has been on me to go to a support group, she thinks I’ve been mopey and grumpy and that it would help me to talk to others who are in the same place. I have become extremely introverted since my diagnosis and the idea of leaving my house to go speak at a group is overwhelming. So I am giving this group a try, not sure what I’m hoping to find from it…
Welcome! I know how you feel, I was feeling very isolated and alone and there were no support groups to actually go to, I probably wouldn't have gone anyway, but I found this place and it is wonderful! I've had lupus for a very long time I was happy to know I wasn't so alone and isolated as I thought, here they all understand, we share ideas, stories, experiences, offer advice, vent and rant too. I hope as you read the posts you will see everyone here is supportive and caring. Good luck to you
Welcome to the group!
It is hard to reach out when you are feeling so bad but remember all of us here feel just like you! Really the more information and education about the diease you are armed with the better understanding of what is going on with you is empowering! Let me suggest that you find a lupus group in your area and attend those meetings too. Just look on the national lupus foundation website for a location near you. (Lupus.org)
The more support and understanding you have the better you will feel. You don’t have to talk at the meetings you can just listen to others. That Way to hear and see you’re not alone in this journey.
Most lupus group meet once a month. We talk about different things with regards to our feelings and symptoms. Problems we might be having with regards to support or our emotional status. Because lupus effects each of us in different ways in an open setting you will learn much more to arm yourself to become a stronger advocate for yourself to fight this disease. This will help you talk with your doctor better, and obtain suggestions to help you along the way, such as keeping a journal of medications, feeling and symptoms ect…
I am here for you just reach out! Wishing all the best!
Welcome to the group! I have been on here for about a year and have loved. To hear from others to share stories to vent or to just listen is amazing. I LOVE it and it has helped me so much! There is always someone there to listen and support through all of this. It is really hard and I know how you are feeling. It took me awhile to get out and start doing things. I will be thinking and praying for you as you start this journey! :)
Wow so many responses so quickly! Thank you all so much for the advice and kind words. I’m currently on bedrest from work and it is so frustrating. My body has different plans and limits then my mind does.
Not sure what you will find either...but I sure hope you find some posts that strike a chord with things you are experiencing and help explain a bit...or find kindred souls who can let your understand that while complicated, sometimes serious or annoying health issues...a Lupus diagnosis is NOT the end of the world...just the end of the world as you knew it...now and then. We don't ALL get the same symptoms or problems or reactions ALL the time...nor do the same medicines work equally well for ALL of us...but there are usually always a few similarities...and enough information...and enough people to let us ALL know...we are definitely not alone...and there are way WORSE things that could be happening to us. My rheumy suggested I try DHEA sold in nutrition stores and Wal-marts...to give the energy level a boost...and it does help me. Some medications others take routinely are too strong for me...but work ok when I lower the doseage by 1/3 or even half. My doctor is exceptionally good about me trying that...as long as I keep notes of the results pro and con...and does NOT act like I am making up weird symptoms or putting his expertise down when I discuss things with him. I'd say one half of my time each year is spent feeling relatively good for someone with all the crap I deal with from Lupus and RA...and the other half varies from...." not great...but okay"..."struggling but hanging tough" After you live with this disease/disorder for some great length of time...say over a decade or two...you realize...we are not ALL going to die...we are not ALL going to suffer endlessly (though at low moments we imagine we will) and that there will always be moments of well being and joy. All in all....it sounds a lot like life to me.
PS....I also think your age when diagnosed makes a bit of difference also...when young...every little thing seems more important and traumatic...because you have less life experience...so everything seems HUGE...60's and 70's...not so much and sometimes just one more thing you didn't expect to deal with...but will...like so many of life's occurances. It's pretty much a matter of perspective in that way. I've gone through years where I only have to see my rheumatologist once very 6 mos. or so...and my nephrologist once a year...and my PCP once every three months...and my eye Dr. once a year...to months when I have to see each of them two or three times a month or more. So far...when something is a serious threat...mine work together to get me back to the most minimal danger or suffering possible...and I am suitably grateful for them all. I have a great husband also...who is very supportive, involved...and not critical or judgmental about things and issues he doesn't have himself. I am pretty sure that working ( by being honest, open, and responsible) in your approach with ALL your support people from your spouse or family right on through ALL your medical support people...helps significantly. It is no one's fault you got this...least of all your's OR their's...so being critical, demanding, or expecting them to have ALL the answers...just won't work. With Lupus...half the battle is realizing that trial and error is half the work. Very best of luck, care and support to you...and yes...BEDREST SUCKS...especially if someone else has to carry your load while you lounge in bed. If you CAN lounge...just be grateful. :-)
Welcome. I know this is a scary and stressful time for you, but you are not alone. So many on this site open up their lives to give what comfort they can to a brother or sister lupian in need. Try not to beat yourself up for feeling whatever you feel (mopey or grumpy or mopumpy) Its better to acknowledge your feelings than to try to suppress them that just makes everything more stressful. I hope you have found a good doctor that will work in partnership with you. If you ever just need to bend an ear we are here. God Bless Julie
Welcome to the group! I like this place because I can read about what other folks are going through. When I was diagnosed in 2010 my doctor didn't even have the courage to tell me face to face, she had her nurse come in and say you have lupus and handed me a printed copy of what lupus was and a prescription. The first two years were the worst of my life. But I found this group and I just read/listened at first and realized that I wasn't alone.
Here I can ask questions about medications and not be intimidated or ashamed that I may feel a certain way. I have recently found a face to face group in my area but this online group is a nice complement.
Ask anything you need to Autumn...if we can...we will answer. There are NO stupid questions.
Welcome! I am so happy you found us! This site has been a God-send to me. I know being here has given me smiles, knowledge, comfort and yes, even tears. We all have a story and a journey that is our own. We all struggle to find the best path to take for our many challenges. Thankfully, we now have many friends to support us and share in our walk through life. I look forward to seeing how you are faring and I wish you many successes. Even though some days it may feel like you are taking two giant steps backward to one baby step forward. Just keep in mind that there was a step forward in there somewhere. Lol! Sending you hugs.