jennifer-jenn-powell
Forum Replies Created
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I enjoyed Teresa’s column as she captured how it feels to receive cliche’s. The support we so crave seems to evade and people are often at a loss. The assumptions made about our state-of-being are painfully untrue. It is okay to just be un-ok. Thank you Teresa #realtalkrare
Jenn
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I have SO much experience here – I am learning that I have been the recipient but also given platitudes. It feels so frustrating when someone glosses over with an “At least it is not worse”, or “I know how you feel.”
Has anyone else struggled with this? Let me know – let’s get real! #realtalkrare
Thanks,
Jenn Powell
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Hello,
I can truly empathize with how difficult this decision is. I have Secondary Progressive MS and am on a similar infusion. I have been advised not to proceed with treatment due to Coronavirus. I want to emphasize that each individual’s MS is different. My physician made a decision based on my case.
I see Adam is scheduled two weeks apart. That tells me this is his first infusion of Ocrevus. I suggest speaking with his neurologist to discuss your concerns. S/he can best guide you. as to what would be in Adam’s best interest.
Thank you so much for reaching out. We wish both you and Adam the very best.
Kindly,
Jenn
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Dear Lola,
I wish I could hug you. Feeling unheard and unsupported is very tough and the isolation compounds those feelings.
Many do not understand all we endure. To make themselves feel better they offer quick fixes or platitudes which can make us feel worse. You are heard here and validated in your pain. I do wish I could help with your isolation. When I was first diagnosed I was paired with a mentor who blew me off – that was pretty ironic. I soon found it was not because no one cared it was because the wrong person tried to. I attended another meeting among new people and felt heard. You have grieved so many losses and deserve nothing less.
Navigating this disease is not easy. I sure hope you keep trying to connect, just as you did here. You are worth it, Lola. You added so much to our conversation with your honesty and in doing so helped others, including myself.
Warmly
Jenn