Biggest challenges you face in your current journey?
Hi- I'm just curious about how people navigate this journey well. What are your biggest challanges and support needs? Where do people go to get support? What actually makes a difference?
I try to spend time with my dog, family if they are available. But mostly I cope by being creative and try to find a way to brighten someone’s day that may be feeling like me….
I love baking! Anything crafty or creative, even cooking can be creative!! Hopefully-J , yes, I love expressing through food - finding long lost childhood favorites and recreating them - you'd be surprised how much that can say love to others <3 - Warmly, Donna (Team Member)
I rest and do only as much as I have to. I no longer feel guilty. It is an aspect of this condition that we learn to live with.
Beyond the difficulties of navigating my mito disease while being a single parent with a child who was also diagnosed is advocacy with doctors.
Like today, I was talking about how I need a certain blood test because of a medication I’m on can make the disease worse. Though I couldn’t articulate that properly. I’m not sure if my primary care physician added it or not.
I’m also scared to reach out again, out of fear I’ll be seen as combative and asked to find a new PCP.
I even researched meds that could be used instead of the one causing the issue. I would have to give myself a shot everyday instead of a pill every night, but in the long run, it’s worthwhile.
Yet here I am scared to say anything until my next appointment. I’m not alone in this. I don’t think they meant to gas light me. I think it was a miscommunication because I’m not able to communicate like I use to.she’s relatively new. My old one who I adore had staff that were awful. Now with the new PCP, her staff loves me, but she seems annoyed when I bring things up. I know not a lot is known on MELAS, but if I feel uncomfortable on a medication and did the work to find a replacement that doesn’t interact with any of my other medications, I should be listened to. I just couldn’t get my words out for why. I’m scared to find a new PCP again , I feel you there. My PCP is amazing - her staff is the worst. There is one nurse there who I trust and feel comfortable talking with. Is there one of her staff you'd feel comfortable telling your concerns to, and talking about the medication you found? Nurses had so much knowledge and can understand the intricacies, and are often more willing/able to and skilled at listening. My PCP offers nurses visits, could you schedule one and speak to a nurse you are comfortable with and have them convey your concerns? It might be easier to talk with someone you feel is open to what you have to say, and they will probably be good at conveying the urgency of your concern and need. I hope you can make a connection that brings you to a more comfortable way. Please keep in touch and let us know how it goes. - Warmly, Donna (Team Member)
My biggest challenge is to do my workouts as just today I graduated from pulmonary rehab. They made it easier for me as they gave me a scholarship to keep going rehab (on my own) for 28 sessions
oh really? I didn't know that about the insurance company's. Thanks so much for the info , you're most welcome! It's part of their wellness programs. I hope it helps! - Warmly, Donna (Team Member)
