View Full Version : Recently Diagnosed, A Little About Me

09-05-2013, 06:17 PM
Hello everyone, my name is Kai. I'm 26 year old guy from Ontario, Canada. I was just recently finally diagnosed with Lupus after many years of medical problems and never knowing why. They also diagnosed me with Osteoarthritis as well which is unfortunate.. But anyways, I'm here on this forum to try to find some other people going through similar problems. Maybe find out some more things about the illness and help others if I can in any way. It's very frustrating feeling so sick all the time but looking fine. Friends and family thing you are ok and treat you as such. Your called names and treated as if your lazy or just making up how awful you feel. Not everyday I feel so bad I don't get out of bed but some. Is it like that for any of you? How do you cope with the hurtful things people say to you?

09-06-2013, 05:10 AM
Hi Kai.

Welcome to WHL.
We are almost neighbors, I live across the lake from you, in Rochester NY.
I am glad, that you have finally gotten the diagnoses, we all know, how important that is.
As for your family and friends, not believing you and calling you lazy, tell them to educate them selves, so they can understand, what you are going through.
Off course, people who don't have Lupus, can't fully understand, but they can learn about it. You will learn with time, to ignore people and what they say or think.
As for having bad days and good days, we are all in the same boat.
Are you on any meds yet?
Looking foreward to getting to know you.


09-06-2013, 08:44 AM
Hi and welcome to WHL! We are really glad to have you. Please make yourself at home. I look forward to getting to know you

09-07-2013, 08:46 PM
Hello Debbie and Mary! I am not currently on any medication and I'm finding it extremely hard to cope with life.
I do not have a family Doctor so its impossible for me to get the care I need. I'm not sure what to do really. The pain is unbearable though,
when I have my flareups I am hospitalized every time. On day to day basis I just have extreme pain in my knees, ankles, hands and my back
from a previous injury which I'm starting to think is from the Lupus as well. Is it possible that something swelled up and pushed my disc in my spine out of place?
Its all just so overwhelming.. Sorry to shoot a million questions.. I'll slowly find out more and more as the days go on. But I for sure need to do something
about the pain I'm in constantly. The fact I sleep about 3 hours a night caused by pain is awful... Hopefully I will have a better life soon :(
I'm too young to be so miserable all the time. I'm a happy person who is outgoing normally. Now I'm a recluse with no friends, no quality of life
and no way to get relief..

09-13-2013, 06:51 AM
Hello and welcome to our family;
I am sorry that you are suffering so much and that you have to deal with people who do not understand and/or who do not want to try to understand. Please know that so many of us have been where you are or are currently where you are and that we truly understand. Here, you will never be judged, never be told that you are lazy, and never be criticized.
I wish that I could help you with your pain, but without a doctor's diagnosis and care, most medications that could help you are not within your reach as they are prescription medications. Is there no way that you can see a doctor to help you with your pain so that you can get regular treatment? Over the counter meds can help a bit and for a while, but their extended use or use in high doses can be very dangerous.
Please let us know if you are able to see a doctor who is willing to listen to you and to treat you. I wish you the very best.

Peace and Blessings