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Lupus or not Lupus?

Autoimmune Diseases | Last Active: Feb 25 10:00pm | Replies (45)

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@thecyborgenchi

Thank you so much for your kind words, seriously! I do feel crazy, but I KNOW i'm just majorly stressed out. I keep repeatedly being told that my diagnostics are fine and I'm healthy... it REALLY wears me down, and I can't afford to be more worn down than I already am.

As for "old" - my legs have been deemed to have the nerve flow of a 90 year old, does that count?! I FEEL old, but... I'm only 41 😛 But I think I may know what show you're talking about, that's from my parents' era hehe

As for a trusted person to take with me... that is much more difficult. I don't have many of those now. A best friend (she would not be the one to keep me calm tho) and a cousin (that works constantly) - both of whom live 30-hour away from me, respectively. Due to recent and major life changes, my mom left her husband (yes, he is technically my father, but ugh) and moved to Colorado to be with her sister, so... yeah, I'm on my own. My son is almost 18, but he is autistic (needs care) and I wouldn't subject him to any of this. He IS the sole reason I haven't given up.

Hopefully the doctor's office will do as I have firmly requested and get me that referral to the rheumatologist, and we can go from there. 🙂

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Replies to "Thank you so much for your kind words, seriously! I do feel crazy, but I KNOW..."

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.

@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