not sure what do. my family knows about sle but i hide it from them
i have not been to doctor in 3 years.i have been in a constant flare for 6 months on and off. just need a lupus friend i can tall too. thanks
You have come to the right place. We are all here for you !! I hope and pray you feel better soon. And hopefully you will see your dr soon.
Angela, I'm so glad you posted. I agree with sandy, we are all here for you, and this is a great place to find caring and understanding. I'm going to send you a friend request so you can send me private messages, and let me know if there is anything in particular I can help you with!
You are not alone, but I do feel having some kind of treatment ongoing to help you during your flares would be a great idea. Do you have a doctor you can get in to see?
hugs, Louise
You have to GET A DOCTOR!
I can really empathize what a flare feels like, I'm in a constant flare--75% controlled by meds. But when the meds don't work and with all my other medical and immune problems, I have to see one of my team of spec docs (9).
Pleeeze! See a rheumatologist.
You have to hold on and reach out.
Wish I could make you feel bit better.
Wish you had regular medical checks; - possibly life could be better than it currently is.
Wish you were able to feel more acknowledged by your family.
I'm pretty much a newbie (2 yrs), so will leave it to the old hands for more reliable advice & pointers learned from experience & honed by trial & error.
I'll be wishing good things for you though. Kaz xo
I don’t have a regular doctor
The meds they had me on, didn’t help and all. Not sure who to go to. Denial isn’t helping me anymore!
I feel like I’m all alone in this.
you are already on the internet, is the reason you don't see a doctor is insurance or the meds don't work anymore. you really need to see a doctor even if it is just a family doctor. here is my advise, there are clinical studies out there for lupus and other disease. you don't pay to see the doctor, they give you the meds, and you get paid. I went in for my ibs, I got meds, saw the doctor, they took blood work, and they sent me a check for 50.00 each visit. just a thought.
All excellent advice you have received but one more thing....you need to have regular blood work done and sometimes urinalysis too. How do you know if the SLE is attacking your organs significantly. You can be helped. You are not doing yourself or the family any favors by pretending. Many of us have tried that and it just doesn't work. We are a great group and will do everything we can to support you and we all do care. Blessings and gentle hugs,
I know how you feel…life can really suck…sounds like you need someone to talk to…we are here…why now is life so crappy…if you eliminate stresses you may feel better…keep talking…
;I don’t have a doctor. I don’t even know where yo start. I’m tired of being tired and sick. My family doctor doesn’t know how to deal with lupus. I hurt all the time!
Angela,
I sent you a friend request. I know how you feel when you say you feel lost. I feel that way a lot myself. I have family that lives out of state and they aren't knowledgeable about Lupus. I tell them things and it's like they don't want to believe what I am saying. They have come for a visit and I find myself trying to pretend there is nothing wrong with me. They go home and I'm worse off then before they came. My own fault for pretending, but also I thought maybe some of them would at least make themselves educated about this disease their close family member is suffering from. I struggle with that. I guess they are in denial. Maybe I am asking for too much, really not sure.
What I have found here is a community of people to talk with and receive support from. I have a wonderful husband who understands me and Lupus, but most times, I hate to bother him with my sad stories of what hurts today. I know he doesn't think that way, but I do. For over a year now, I have held all my emotions inside. I feel fortunate to have this place to come and find understanding on something few understand.
We are all here for you. I will keep you in my prayers. Feel free to message me anytime you need a Lupie Friend!
Creekbank
thanks for all your kind words
I need to find a doctor
WHO though? I don’t trust them though. Not sure where to begin.
I pray you can find a good dr. Where do you live if I might ask? My rheumatologist is wonderful. i live in Fredericksburg Virginia. her name is Dr. Maria Darland. Please if at all possible go to the doctor and get some help. I would do a search for rheumatologists on line for your area…if you have insurance, would the insurance company be able to tell you what providers they accept are in your area? Maybe that could give you more information to go on. Bless your heart — my prayers go out for you to find some relief and help. Best wishes, Sarah
You DEFINITELY need to find a doctor pronto. I have had SLE for 8 years now and just thinking about not going to a doctor seems so scary. Not knowing what's going on in my body is something I definitely couldn't deal with. Even when you go to a doctor and are put on meds, yet still the doc. isn't sure exactly whats happening, a lot of test are being done and you are in the dark. The suspense alone is awful. Honestly you are brave! But as reet suggested, what if one of your organs are being attacked and you take too long to have it diagnosed? Search online or the phone directory for a Rheumatologist please!
Hugs!
Hi Angela, there is always someone to talk to here-smile. But you have to go to the doctor!! Yes I know that we don’t want to do that but Lupus has it’s moments , and the strength that we try to have sometimes fade away ,but we /you have to keep your health up. Doctor visits help!! Make the time for yourself to set a appointment soon?? Remember you have to help yourself before others can help you, it is your life!!Beverly L.
Angela, are you the one from Millington, TN? If so, you have lots and lots of rheumatologists in your area to chose from that have patient reviews that are outstanding. U of TN also has specialists dealing with SLE. Go to healthgrades.com and look up doctors in your area that other patients have had. This goes for anywhere in the US
I don’t know any doctors in this area.i hate going, they never seem tohelp. So I never go
I keep it a secret.
I know, I need to go to doctor, scares me . I haven’t anyone who understands. And not sure what to say. I stay swollen so tired
And my feet and kidneys hurt. I have learned to smile. Thanks. For listening
Could you send some good one, not some of these are no help. Thanks
Hi angela, I had to come back n read this blog… Telling your family about your situation gives them a choice of how to deal with your matter in the own way ! Never hide the fact of your Life from them !? What will happen if you died n they found out? Let them have a choice? I think letting them know what is going on always a better outcome!!(I think)Beverly L.