This is my journal documenting my journey (and many frustrations) through life and it's many changes. I was recently diagnosed with Mitochondrial Disease and POTS, which has changed my life drastically. This is my output for all of the many trials and tribulations my illness has brought me.
Hey, I've finally got an appointment with a Mito/Metabolic Neuro in Texas at the end of April!
Am really hoping that this appointment will provide information that helps with the stuck feeling of being undiagnosed and direction for the next steps.
I am a mom of 4 and was diagnosed with POTS just over 3 years ago. I've enjoyed reading you're blog and I'm sorry you're struggling. I was an ER nurse as well prior but am unable to work. I also struggle with how to deal with my kids and how much info to share. That book brought tears to my eyes as well.
Just wanted to wish you well. Hope they can provide you with some answers and good treatment options. I'm stalled right now. I would like to feel better but thankful I'm not feeling any worse. I feel like I'm eeking by and barely able to keep up with my family. There's a lot of guilt for me regarding not being able to play with my kids and it's hard to explain why to them.
I saw your girls weekend was at Lake of the ozarks. We've spent several thanksgiving weeks there. Beautiful and less crowded during the off season. Hope best wishes to you and thanks for sharing your story!!
3 comments:
Hang in there -- you're getting close.
Hey, I've finally got an appointment with a Mito/Metabolic Neuro in Texas at the end of April!
Am really hoping that this appointment will provide information that helps with the stuck feeling of being undiagnosed and direction for the next steps.
Take care,
Donna
Yay! I'm so happy you finally got an appt. Now you get to "just keep waiting, waiting, waiting.." ;-)
I am a mom of 4 and was diagnosed with POTS just over 3 years ago. I've enjoyed reading you're blog and I'm sorry you're struggling. I was an ER nurse as well prior but am unable to work. I also struggle with how to deal with my kids and how much info to share. That book brought tears to my eyes as well.
Just wanted to wish you well. Hope they can provide you with some answers and good treatment options. I'm stalled right now. I would like to feel better but thankful I'm not feeling any worse. I feel like I'm eeking by and barely able to keep up with my family. There's a lot of guilt for me regarding not being able to play with my kids and it's hard to explain why to them.
I saw your girls weekend was at Lake of the ozarks. We've spent several thanksgiving weeks there. Beautiful and less crowded during the off season. Hope best wishes to you and thanks for sharing your story!!
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