Hi Juliana, Brian, and Sophie, this experience resonated for me in many ways, the fear, pain, and cluelessness. I was 14 when I developed mysterious pain, 35 pound weight loss and other symptoms. My Dad was a doctor and got me admitted to NIH for 3 months. I was on the cystic fibrosis floor where the little patient roommates constantly died. The tests and treatments hurt. I called home every time i needed an IV. Eventually with super high doses of steroids, I recovered and had many surgeries and a long healthy remission. My family and classmates were so supportive even electing me to SGA and cheerleading (can you believe that?) It's important to recognize how this impacts the family, especially sibs who are neglected, I wish Sophie and the fam more ups than downs!
I admire you, Juliana, for juggling home and politics.
Thanks so much, Karyn, for sharing your experience. Clearly it was a harrowing one. I appreciate the picture you give which shows the human side for a young person--and you were so young!--including how important it is to have the support of your community, in your case, your schoolmates as well as family.
I also appreciate how you have been able to be politically and intellectually active despite health challenges.
Sounds like hell. Hell! So sorry to hear about that Sophie is so sick and about this experience… wishing you peace, rest, healing and justice… and anxiously awaiting the next chapter.
Juliana, I’m so sorry for all Sophie is going through and for you being an observer. You sound ridiculously reasonable with how Healthcare is being practiced on your daughter and I applaud your patience and constraint. It’s not easy for anyone in Healthcare these days either. I hope she continues to improve, and that whatever the mystery illness is deemed to be resolves fully. Best to all of you, including your neighbors.
This is pretty typical when things are murky. In oncology we have tumor boards to bring specialists together to discuss complex cases but unfortunately this does not happen in cases like this, maybe this is an area for medical reform rather than punting one out the door. Insurance demands about no longer covering a case are intense in hospitals with their case management teams. Still, no excuses for this situation.
Just wow. I have no words. I'm so sorry you all are enduring this. Stay strong, Sophie, you've got this!! (And so do her parents). Thinking of your whole family and sending love and prayers.
Julie, bring us up to date--where are things at now? Caring minds want to know since September how dear Soph is doing. Love and more love. Thank you for your witness!
I am so sorry you, Sophie and Brian are going through this! This whole system is based on profits and it seeps into every nook and cranny! It is so horrendous when getting sick and having to go to the ER. Doctors and nurses are slammed. Health insurance dictates how long you can be in the hospital. It is insane. Don’t hesitate to call me when you my knowledge of blood thinners! Take care
Sophie's over-enthusiastic groomer colleague dyed her. She was a lot brighter purple before so I guess she will eventually fade to gray. But I kinda like the color.
Thank you for sharing. Sending you and your whole family a big hug. The whole medical/health care industry needs a massive overhaul in this country. Spent the weekend with my husband in an inner city ER... it was cruel and devastating to watch vulnerable people treated like this.
Also, that's the cutest kitty I've ever seen. What a great photo~ Although I'm sorry she's such a nuisance, she's perfect as a distraction from one's troubles.
You and Brian and Sophie are navigating this difficult time with such courage and grace. I couldn't be more impressed. As I write this, the path has become clearer but it is still burdensome.. You know that you have my deepest love and support always.
You ñàiled it, julianà!
Hi Juliana, Brian, and Sophie, this experience resonated for me in many ways, the fear, pain, and cluelessness. I was 14 when I developed mysterious pain, 35 pound weight loss and other symptoms. My Dad was a doctor and got me admitted to NIH for 3 months. I was on the cystic fibrosis floor where the little patient roommates constantly died. The tests and treatments hurt. I called home every time i needed an IV. Eventually with super high doses of steroids, I recovered and had many surgeries and a long healthy remission. My family and classmates were so supportive even electing me to SGA and cheerleading (can you believe that?) It's important to recognize how this impacts the family, especially sibs who are neglected, I wish Sophie and the fam more ups than downs!
I admire you, Juliana, for juggling home and politics.
Thanks so much, Karyn, for sharing your experience. Clearly it was a harrowing one. I appreciate the picture you give which shows the human side for a young person--and you were so young!--including how important it is to have the support of your community, in your case, your schoolmates as well as family.
I also appreciate how you have been able to be politically and intellectually active despite health challenges.
Thàñk yóu
Thanks to all for your support and affection. Yes, part II of this saga brings answers and healing as well as more questions.
Sounds like hell. Hell! So sorry to hear about that Sophie is so sick and about this experience… wishing you peace, rest, healing and justice… and anxiously awaiting the next chapter.
Juliana, I’m so sorry for all Sophie is going through and for you being an observer. You sound ridiculously reasonable with how Healthcare is being practiced on your daughter and I applaud your patience and constraint. It’s not easy for anyone in Healthcare these days either. I hope she continues to improve, and that whatever the mystery illness is deemed to be resolves fully. Best to all of you, including your neighbors.
This is pretty typical when things are murky. In oncology we have tumor boards to bring specialists together to discuss complex cases but unfortunately this does not happen in cases like this, maybe this is an area for medical reform rather than punting one out the door. Insurance demands about no longer covering a case are intense in hospitals with their case management teams. Still, no excuses for this situation.
Just wow. I have no words. I'm so sorry you all are enduring this. Stay strong, Sophie, you've got this!! (And so do her parents). Thinking of your whole family and sending love and prayers.
Julie, bring us up to date--where are things at now? Caring minds want to know since September how dear Soph is doing. Love and more love. Thank you for your witness!
Julie, I didn’t know anything about this! How is Sophie now? Has she yet got a diagnosis? What a nightmare!
I am so sorry you, Sophie and Brian are going through this! This whole system is based on profits and it seeps into every nook and cranny! It is so horrendous when getting sick and having to go to the ER. Doctors and nurses are slammed. Health insurance dictates how long you can be in the hospital. It is insane. Don’t hesitate to call me when you my knowledge of blood thinners! Take care
Thank you for this update Juliana ❤️ Sending so much love to Soph & to your neighbors.
Thanks for sharing your journey. My thoughts and prayers are with you all 🙏🏿❤️😇
And PS...is your cat naturally purple?? She does look a wee bit possessed! xoxo
Sophie's over-enthusiastic groomer colleague dyed her. She was a lot brighter purple before so I guess she will eventually fade to gray. But I kinda like the color.
Thank you for sharing. Sending you and your whole family a big hug. The whole medical/health care industry needs a massive overhaul in this country. Spent the weekend with my husband in an inner city ER... it was cruel and devastating to watch vulnerable people treated like this.
Also, that's the cutest kitty I've ever seen. What a great photo~ Although I'm sorry she's such a nuisance, she's perfect as a distraction from one's troubles.
You and Brian and Sophie are navigating this difficult time with such courage and grace. I couldn't be more impressed. As I write this, the path has become clearer but it is still burdensome.. You know that you have my deepest love and support always.