Holding to Faith

[49erssteelers]

I was diagnosed w/SLE Lupus May 15, 2013. To say the least it has truely been the worst thing ever. To go from a fully functional athlete, coach & working on my job for 21yrs to being over weight & being terminated because my FMLA is up has been a nightmare. All the meds, side effects & conditions are insane. Despite having other organs being affected I hav to believe that this to shall pass! My thing now is to fund a new doctor & a better climate to live in preferrable in the Arizona area.

[lupus-support1 Administrator]

Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.!

I am sorry to read about how lupus has affected your life and I wish I could tell you that this is unusual, but that would not be accurate. Nevertheless, with better diagnosis and treatment, many patients live a "normal" life (whatever that means) and many come off all medication. I realise this is not something you may want to hear, but when I discussed my situation with a former rheumatologist, although he even mentioned Arizona, he did say that eventually the body adapts to the environment and a lupus flare will happen regardless! At the same time, if you live in a cold, wet, grey environment, this can be very depressing and thus a sunny climate (where you need to take precautions if you are photosensitive) can make you fear happier looking at a sunny sky!

The most important thing is to be seen by a lupus specialist. Not all rheumatologists are specialists in SLE; many have never seen or treated lupus patients. If you are in the US, there are excellent lupus doctors. I recommend you go to the website of the Lupus Foundation of America and find the nearest Chapter near to where you live or will be living and ask for doctor recommendations: lupus.org/chapters

We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden. 

When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/". 

Finally, please go to: lupus-support.org/LuPUSMB and Sign Up. 

I look forward to talking with you more! 

Sometimes we need to talk to people who understand and who are not family or friends. 

With good wishes! 

Ros 

Disclaimer: No attempt is made to diagnose or to make any medical judgement. You are advised to seek the advice from your own physician. LUpus Patients Understanding & Support (LUPUS) is not a substitute for your own doctor.