I'm just following up on our
first Buddy to Buddy Phone Call night.
The participants were: Butterfly Goddess, Angel and myself (3Sisters).
It was a very beneficial conversation that covered several issue's that Lupus/MCTD patients struggle with, as well as dynamite suggestions of daily living while living with this chronic illness:
~
Honestly Informing teachers and co-workers that you have a chronic illness, that some days you might be having a bad day and that certain behaviors or actions on those bad days are disease related. -->
Kudos to Butterfly Goddess for this suggestion!
She explained that she has honestly informed her professors at school that she has Lupus and explained to them that some days she might be wearing sunglasses in glass because of the light and not goofing off. Also, that some days she might appear dazing off or looking blank, that it's just her having a bad day. She also shared that she has informed co-workers in a similar fashion. The results of her doing so have given her understanding from other's.
~ The frustrations of disease symptoms manifesting, and the painstaking journey of doctors lacking in firming a diagnosis.
~ Finding a good doctor that you respect and trust, and when you find them being a satisfied patient
~ Family members lacking in compassion and understanding of our ups and downs with living with Lupus.Dealing with loved ones who are in denial about our health problems. It was unanimous that we are not looking for pity, just the flexibility from them to understand that we have good and bad days. (hey, our good days are not equivalent to theirs!)
~ To know and admit when our internal barometer of
slow down is signaling and to say
no to prior plans commitments that we've made with other's. It's hard to say "no" but we all agreed that ignoring that interior alarm will have a payback on us.
~ That we want to thrive and live to the best of our abilities while living with this illness. That we don't want to hide out and not do anything with our lives.
~ It was agreed by the three of us, that taking low doses of prednisone, provide us many benefits that outweigh the risks of adverse effects. It does give much quality to our days.
~Lastly, it was expressed at the end of the call, that we don't have to be alone with this illness. That we want to and need to connect with other patients, and that through fellowshipping with other patients, encourages us and gives us hope. Sadly, some of our family members don't understand this need, but this is a very real need for us. We all need the hope that only other patients can provide.
It was a wonderful experience and I thank Butterfly Goddess and Angel for sharing some of thier evening and experiences with me. Butterfly Goddess wants to be at the top of the "on-call" list!
We are scheduled for next Thursday and we need one or two patients who want to participate. Email Kathy if you are interested:
Lupuswebsite@aol.com 
Please for give me, for I'm feeling the vice grip of brain fog while I type!
Thank God for spell check....
Be well and Thanks,
Kim
Lupus/MCTD Awareness