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?
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)
My biggest challenges are trying to deal with severe pain in my body. My body is very important to me. I need to get connected with support groups. Can you tell me about support groups? I'm Thankful and Grateful to God that I am still here everyday. I was diagnosed with Sickle Cell when I was six months old. I'm dealing with a negative situation right now and I'm completely exhausted physically and mentally. I appreciate all of you. God Bless all of you.🙏🙏🙏❤️❤️❤️❤️💜💜💜💖💖💖💖💖🩵🩵🩵🩵💫💫💫💫⭐⭐⭐🌞🌞🌞🌞🌸🌸🌸🌹🌹🌹🌹
, we're glad you're here! There is always support for you here. Have you also check out our sister site sickle-cell.com? You'll also find support there, as well as some disease-specific information and support. - Warmly, Donna (Team Member)
Hello. I think it’s been difficult but rewarding to navigate this journey. I look forward to support groups. Opportunity to educate, and find hobbies I can do on
My down time. I’ve had a big project but didn’t think it was possible but I think now with proper coping tools (some self reflection for me) and help building a support system little by little you can find ways to navigate and manage..Very successful, yes. It has been important to not keep explaining to those that don’t want to understand and appreciate those around me supporting me cheering for me that do! , yes that makes complete sense. It takes an incredible amount of energy explaining to people who run you in a 'justification loop'.. Buying out of the cycle is a great way to take care of you. -Warmly, Donna (Team Member)
