I was diagnosed this year and when they told me after almost 2 years of feeling like i was there test monkey.after blood tests,x rays,biopsy,m.r.i .My mom was the one who took it worse .I kept seeing her cry .I was the one person that held it together and i was fine with having lupus.I told her it can be worse and that i’ll feel better with the medication they gave me .i had all in faith in the world i felt i can conquer this,that i wouldn’t live with it all my life,but lately I’ve been feeling like i surrendered,I’ve given up.i feel no matter what i do i’ll have this for the rest of my life.does anyone feel the way im feeling .
Unfortunately a few decades ago the diagnosis of lupus was almost like a death sentence so your mom is reacting on old information With the advances in modern medicine however lupus is now just a chronic disease and life expectancy is full with adequate monitoring and treatment Diabetes is a life long disease hypothyroidism is a life long disease - this can be managed and you can still live a full and happy life
Lotus,
Its been three years for me now…the lack of faith comes in waves. During the bad times we just have to ride out that wave until things settle down for a while. This disease is a rollercoaster.
The rest of your life is a long time, lotus. Who knows what advances in treatment there may be in the next decade of two? Try not to forecast, but just to take life as it comes, and savor what you can.
I feel your pain about that. I can remember when they finally told me that I was diagnosed with Lupus. Everybody was in denial except for me. I was glad to finally know what it was instead of people just thinking I’m crazy. I think we all have days of losing hope especially when we aren’t feeling good. It’s been almost two yrs for me. It’s never easy but some days are better than others. It’s some we must adopt to but we can never get use to it. Still keep the faith whose to say they want have a cure 1 day.
I feel your pain about that. I can remember when they finally told me that I was diagnosed with Lupus. Everybody was in denial except for me. I was glad to finally know what it was instead of people just thinking I’m crazy. I think we all have days of losing hope especially when we aren’t feeling good. It’s been almost two yrs for me. It’s never easy but some days are better than others. It’s some we must adopt to but we can never get use to it. Still keep the faith whose to say they want have a cure 1 day.
Hang in there! No matter how much faith we have, there are always those moments where doubt sneaks in but it will pass. I'm too new to know exactly how frustrated you must be feeling, but my days will come, I suppose. Stay positive, find distractions, and vent as much as you need to!
It took two & a half years (after diagnosis) for me to get into my first (& current) remission. I feel I do at least partially understand how you are feeling. Just prior to my rheumatologist advising I was in remission I had experienced some very nasty weeks & was really quite shocked at the news. No walking stick for 6 weeks now. Its not a 'miracle' but every few days I'm aware of small improvements. I do urge you to read/talk/whatever it takes to keep your spirits 'up' & get the positive attitude back on track. It will serve you well & the investment you make will pay dividends. Best Wishes to you have a nice weekend. Kaz xo
It's very overwhelming to be told you have a chronic disease with no cure. Lupus is a disease that needs to be managed like any other chronic disease. There are new treatments every day & research is ongoing. I've had Lupus for 20+ yrs & after trial & error with various medications I've been stable for quite a while. Education is very important ,the Lupus foundation is a good start also Dr Daniel Wallace's books are very informative. Find a Rheumatologist you feel comfortable with & work with them to get your Lupus in remission. A Lupus Support Group could also be a good source of support as well as this blog to connect with people going through this journey. God Bless you
I understand. I was diagnosed a year ago and some days I’m good and some days I’m not. GOD is all understanding and for giving He realizes we can not be all good all the time. Just remember the good days when the bad days come. THIS TO SHALL PASS. I don’t know when but it will. Keep ur head up I’ll pray for US
THANK YOU ALL for letting me rant and for making me hopeful.im going to try to keep my head up and try to be positive.may god bless you all <3
I feel for you. I'm in the worst flare I've ever had I went to the ER yesterday for pain relief. I'm 47 and I've had lupus since I was 13 now I take Cellcept and prednisone. I also now have Sojgrens, Connective Tissue disorder and Scleroderma. I'm trying for disability my Rheumy suggested it. So I try to keep my head up but its truly hard.
Try to stay positive :-)
Wonderful discussion... When I was first diagnosed, I wondered "why?" Why now? Why this? Why me? I have choices, ignore it and maybe it will go away? I don't think so. Accept it, and adjust - yes, one day at a time. Surrender is a huge leap of faith, and a very positive thing, not a negative thing. It doesn't mean to give up, just adjust and change.
Whatever you do, don't lose your faith. God is able. We have the disease, but God can give you the strength to endure. Yes, some days are very hard and people/family just don't understand. Keep fighting, stay strong, "YOU" will be alright.
BE BLESSED!!!!!!!
Live your life! not in a denial way of your needs and accommodations but in a way that it doesn't define who you are. Be kind to yourself and know that what defines you is not a diagnosis. Be thankful for a kind, compassionate and loving mother I tried to explain to my Mom how stress effects me, and I was told, "everyone has stress, you can't avoid it." She never took the time to hear me or research and the tone conveyed a flippant non caring attitude. So I refuse to talk about it. I've had my faith tested beyond belief, and if you hold true to it during the unimaginable times, you will find yourself growing stronger in ways that the body could never be.
Peace and Blessings!
Donna
I feel your pain. At one point I went into remission, but now I am back on numerous meds and have constant aches and pains. Please hang in there. I have been dealing with this for many years and yes, sometimes the depression gets to me. I have a great medical team that works closely with me.
I am still working 40 hours a week, but there are days that I just can't go. Learn to recognize what your body is telling you. Today I am at home due to a sinus infection that can really get me down, so I opted to rest and take it easy for the day.
Contact me anytime that you want to talk.
Hello! YES we all feel the like this at time it's part of the Lupus / Depression ! So find something to do when this stage comes about , it is hard , YES! i know . this is the part when you have good days / bad days stage that we all have . Stay positive . You will be fine - just Don't STRESS during this moment ...Beverly L.