← Return to Lupus or not Lupus?
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Replies to "Thank you so much for your kind words, seriously! I do feel crazy, but I KNOW..."
@thecyborgenchi We have all learned to advocate for ourselves. It is proactive, helpful, fulfilling, frustrating, and rewarding - all at the same time!
While you plough through getting the correct diagnosis, a couple of things I would like to point out to you. Number one, we are all here to listen to you, and support you. Venting and getting feedback helps us get through the day. Number two, autoimmune conditions like lupus, can be real difficult to diagnose. I have heard it referred to as a "constellation disease", as there can be many facets to it. When I was diagnosed in 1988, there weren't the sophisticated tests available now, and they had to limp along.
Wishing you success in getting in to a rheumatologist soon, who can look at the whole picture and come up with a diagnosis/game plan!
Ginger
WOW! You have much to be stressed about. These social burdens, isolation and your dear son combine to drain our stamina! I can't be there for you, but we can read your notes, listen and send encouragement.
Do you have in your town any groups that meet: such as an arthritis group... you don't have a diagnosis yet, but you would find lots of folks who have gone through similar journeys. I do hope you can find a pair of compassionate ears! We all need them.
Perhaps there is a group at a mental health place that would have some meetings or 'something' for 'Stress', or for parents with kids with special needs? .. I'm just thinking of how / where you could find some support.
Personally, I have found groups have been a great place for support and learning. There was an Arthritis Clinic in my previous town, that offered several groups and therapy, etc.
In the meantime, you have 'Connect'!
Let us know how you get on with your appointment
All the best to you.