I was diagnosed with lupus just over a year ago now: I have been ill for almost 20 months, almost all of it in bed or homebound, in pain, etc. My entire life has changed since being diagnosed with lupus; the amount of activity I am able to take on, what my future will look like... what my days look like...something I'm sure everyone here understands
I have tried three = four treaments now, and none of them have actually given me any progress. I feel the same as when I was diagnosed- but find that my days are better (not my symptoms) because I have gained more skills to cope with the symptoms and the emotional crap of the disease. While Dr's say that some other treatments may bring me more relief- I am unsure as to how much relief will actually come (or maye I've lost hope?)... and doctors also say that, I will never actually retain the functioning that I had before I got sick (so there isn't much 'imprvoement" that i can expect.)
I wanted to ask everyone here- have you actually gotten any better- or do you also find that you have just gotten better at coping/ living with the illness?
I've asked some people I know with lupus and they say that it's more the coping- but sometimes they are better- ...
Very good question!! I would have to both but more coping. I have been sick for over a month now and haven’t sen much improvement but just like you said I to have learned to cope with lupus. I rested a lot the past 2 days and today because of that I was able to make home made cookies and do a little cleaning. I am still working on coping with the stress of having lupus and everyday life so hopefully with that I am feel some ounce of relief. Praying for you. Gentile hugs!
I think its a bit of both. I know I’ve adapted better to my new reality but there’s still hope that something will make me feel better. Because with my internal organ involvement, I have to have hope that something will help. Cytoxin next Thursday. Then we’ll see. I’m on 160mg im steroids daily and sometimes my Xanax and pain meds are all I can swollow to sleep and function. Again, different reality. I always have a positive attitudes (although this hospital admit, I didn’t…) so, yeah, both. I do know it does get better because of seen it happen.
Great topic, thanks for sharing this. For me, my attitude towards my illness has helped me to heal and improve. I went through a process of feeling sorry for myself and then I accepted that I had to change things in my life. Reducing stress, by getting out of a job I couldn't handle anymore, eating better, and exercising. My fatigue has improved, my pain is manageable, yes I have days where I hurt more, but I have just accepted it as normal. My lupus involvement is improving, and I'm well enough to get back to work. I feel better than I did when I was first diagnosed.
I’m better than I was at the beginning. I think it took at least 2 years for the plaquenil to work but I’ve learnt to only expect snail like improvement each year - but all that adds up. I’ve also learnt to rest and pace myself and I still have many bad days… Great question!
I also have fibro, so some days are worse than others. For me, I think I've learned to accept my new "normal". When I did that, then some physical symptoms began to improve because I wasn't pushing myself so hard.
Positive attitude helps a lot but some days you just need to wallow in self pity and be kind to yourself then move on to small goals. I sometimes have to play the "what if?" game. What if I had....fill in the blanks. Sometimes I think what if I were Ann or Jen or ....? People right here on this board. I am doing well right now and it does take time for meds to start working. Be sure to pat yourself on the back for the small accomplishments you do have. I remember more then one time I was happy that I was able to shower AND wash my hair before collapsing. Sometimes washing my hair in the shower takes its toll big time on me. Gentle hugs and prayers.
laughter soothes the soul. My mom is holding my pain meds right now. And I’ve been up all night in pain. So I’m trying to have a sense of humor alas, she will be with my at pm on Monday who can quelish some of her fears. And my kid. DVD makes me laugh. Smile every day. It will help you cope.
I did spend a good 3 years in a deep depression after being diagnosed… But then I decided, that was boring.
Yes, this is a great question. My lupus has evolved over the last ten years, and no two days are the same. In my experience, I feel like the treatments for lupus are not as effective as I believe they can be, but my biggest challenge is coping, dealing, and understanding my limitations (so difficult!). I've had to modify my expectations about what I can and can't do -- and you know? That's okay. The one thing I do differently now is I tell people I have lupus. I don't hide it anymore. I tell everyone, and that works for me. This is such a difficult disease, and I will no longer feel shamed or less than. I have this disease, you should learn about it, it sucks, but I'm going to be okay. Mind over matter.
I, like Jen, after getting diagnosed was also deeply depressed for several years. Jen, you're funny. Depression is boring!
I feel the same way. I just have to put forth my best effort and keep on going. It's not easy, but it is worth it.
Bumps said:
My experience was that when I was diagnosed I believed everyone's garbage! I believed I was sick, I believed I was disabled, I began to let it run my life. This went on for a year! Then I began to realize that I have been symptomatic since my late teens. I realized that many of the things that I can now associate with Lupus I have lived a life associating those things with just the way it is. You know......hhhhmmmmmmm....that's a weird rash.....I guess it's just me! In fact I've always had the saying, long before diagnosis, that my body might look good on the outside but it feels 90 on the inside! But one day I just though "ya know whatever I have going on now has been going on for a very long time and I have let someone put a name on it and now I feel worse than ever!" It was so stupid!!!! I had a Cher in Moonstruck, "SNAP OUT OF IT!" Moment decided to refuse to let this take over, went back to staying in the best physical shape I can ( even when I don't feel like going to the gym.....I go!!!!), went back to the old me who just shrugged her shoulders and carried on. Don't get me wrong, I make accommodations, do what I can, eat a proper diet, follow my doc's advice.....except when he tells me too much physical activity is bad for my "condition". To that I say, "oh well. It's who I am!" And realize this is the hand I've been dealt. So in the next year after diagnosis I feel better than ever. I now know why I feel like I do and can meet it head on but I will die before I let it own me. So I shrug and carry on! In fact, I work with a girl who's attitude is much like mine.....when she was diagnosed with MS, instead of rolling up in a ball in the corner she changed her lifestyle. Lost 90 lbs, now runs triathlons, half marathons and in April we are both on a team to run the Tough Mudder. It will be her first Mudder. I never felt so alive as when I was in so much pain doing the Tough Mudder Challenge . Every day that I wake up is the best day ever!!!!!!!!!!
I have learnt to cope better, but remember you are what you eat so make sure there are vegetables in your diet daily and no matter how much you hurt try to do some exercise daily it will help and always pray.
It's both, some day are okay, okay is where I live now. I count my blessings, tell my self it could be worst. I still can work although it takes a lot to get through 8 hours, I do it because I have no choice, I'm not bed bound, I can walk, I still can enjoy the simple things in life, I still have passion for writing, enjoy days with my daughter, I still can my a difference in someone's life. But there are time when I sink into a deep depression and I want to give up but I go on because I must there are people that need me and love me and I want to be here for them. Where there is life, there is hope. Keep your head up,Aisa64
When I finally accepted that I had lupus, I gave in to it. Now I have decided that I will not let this disease run my life. I have taken control. I do rest when I'm tired and cannot do a lot that I used to do, but that's okay. I have substituted other activities. I am getting better at coping. So many others have worse symptoms than me so I quit feeling sorry for me. I still slip back into that, but when I realize what I'm doing I tell myself "Stop It!" I'm with Ann. I hope I have adapted better and lupus will do less damage for me to cope with!
Up until a severe flare this summer that landed me in the hospital for ten days I felt that was coping pretty well. I was having some stomach issues and stopped taking my supplements and 3 months after I stopped my supplements I had the severe flare so I believe that the suplements were helping me cope physically. Coping mentally is a different thing but I had gotten better at that. I refused to be defined by my disease. I had to set a good example because my daughter was diagnosed with lupus as well.
The supplements that I am now back on are fish oil, resveratrol, a good whole food based multi vitamin, vitamin D, food enzymes, alpha lipoic acid, milk thistle, tumeric and boswellia and coQ10, green tea. I also went gluten free a year ago. I am still having problems from the summer flare I had. This is definitely the most difficult time I have had mentally and physically coping. It is very challenging and I wish you the best of luck.
More coping but I am definitely better than I have been. At my worst moments I was unable to walk, had constant debilitating pain, and could barely see. I go through periods of that but the meds do help. I am in pain most all the time but I can deal with it - coping yes, but lots of meds just has to make a difference. I find that I don't verbalize my complaints as often, I know others appreciated that, and I am also SO glad to have you all who DO understand those times when we all need to vent! I make a choice daily; choose to get out of bed, choose to smile, choose to thank God and choose to have as positive an attitude as possible. <3
I've had periods of remission on Rituxin that lasted 9 mos for Nephrits. I was on IV Cytoxan for 2 yrs that seemed to work for a while but I do get flares, especially in the summer when it gets hot. I'm not sure if Lupus is affecting your organs but if it isn't your Rheumatologist needs to find the right combination of medicine to treat your symptoms. Lupus is a chronic disease that flares & goes into remission. It's not an easy disease to treat because it affects so many parts of your body. Treatment is basically trial & error. The symptoms can be very upsetting, especially when your young & trying to live your life. I've found the only thing I can do is keep moving forward, take an active role in my treatment & pray for strength to get through another day.
Good topic. I'd say both. Attitude in the beginning made a big difference, I'd stop every negative thought mid thought "nope can't go there", because I knew I'd be bed ridden if I let it get a hold of me. My diagnosis came after I was taken out in an ambulance from my fathers funeral. Having to deal with lupus nephritis and his passing at the same time wasn't an easy feat, but after a while it became a practice to keep myself from negative lane. I set a lot of realistic goals and I'd say physically I'm much better. I've also had a lot of support from my mom & prayers from others. These goals included steroid reduction, when I'd start walking/running again, being informed, using natural organic foods, and focusing on how I could get into a better job that would keep me out of the sun and cold.
Its been a long road with lots of communication with my doctors (oncologist, rhemetologist, cardiologist, nephrologist, gyn, eye and primary) they have told me my lupus is quietly active now.
