← Return to Childhood Brain Tumor/ Appointment w/Mayo FL


Childhood Brain Tumor/ Appointment w/Mayo FL

Brain Tumor | Last Active: Dec 24, 2022 | Replies (12)

Comment receiving replies

I'm sorry I misunderstood your situation. I understand you feel desperate and your life has collapsed. And your not connecting with the care you need. And I'm so sorry your path had been so burdensome in several ways.
I'm wondering if being admitted as a scheduled in patient for comprehensive evaluation is the approach for you. Is that what you are seeking? That would require one Dr. to orchestrate that. Your needed level of care can't be given by the ER + sending records for a review hasn't resulted in your getting connected. As a suggestion, perhaps the focus of your efforts right now should be getting a Dr for the primary role of case management and not even treatment if possible.
Also, have you considered consulting with your insurance company? They have a stake in your outcome and often have ppl who can offer very good direction regarding providers and options.
Another option might be to contact individual orgs who specialize in some of your diagnoses. They are dedicated to providing all current information and are usually directly+ activity associated with specialists. They may be able to get your 'foot in the right door' for treatment you are searching for.
We're in the holiday season AND the viral resurgent season right now. Again, the competition for medical space is high. Everyone is dealing with the same challenge. Prepare yourself for delay of some kind. You can do that. You have to change your expectations+ find it within yourself to get the strength to hold on
I believe you need the benefit of counseling right now. I urge you to get together with a professional or a religious counselor. Or find a self help group for pppl w medical problems. Because you've been depleted of stamina + you're suffering discouragement + depression. You can't let that take over your life. They are side effects of your situation. Those feelings are like a poison that can do more damage than a medical condition.
If you're not familiar with therapeutic counseling, I'll share my experience. I obtained both types of counseling and did so at different times for different issues. Two years ago I went to a Dr to discuss a diagnosis w a poor prognosis+ I wanted to talk about my feelings + thoughts. He opened up the area of my lifelong medical experience. This helped me SO MUCH in understanding myself in ways I never did before.
You convey distress in your communication. Most of us here can relate. I think it's fantastic that you tapped into this moderated medical forum. And I hope you continue to share with us. This is one resource. And a uniquely trustworthy one (that I know of). But it doesn't replace professional care.
I'm going to be praying for you and I'm sure others who read but don't post will also. I used to call my religion's prayer lines when I felt desperate. That's something to think about too.
I'm now in 1° F w a wind-chill of -22°F and tho we have the power back, it's only 37° in here. And it's the middle of the night. So apologies for any typos etc
Try to envision good things for yourself. More another time..

Jump to this post

Replies to "I'm sorry I misunderstood your situation. I understand you feel desperate and your life has collapsed...."

To clarify - I was trying to say that getting a doctor - not for treatment from him/her - but as a medical case manager- might be very helpful. That would enable you to have a Dr without that Dr having to be responsible for giving care which is beyond his/her level of expertise.
I want to also add that life isn't fair. Everyone knows that as a statement. But some people know that as their reality. Like you. Like me. Like others on this forum. We often receive the gift of life thru medical intervention. But then we have to go forward living the hand we were dealt. Sometimes I wish that when the Drs turned off the respirator I was on as a young child of 6, with my parents there to say 'Goodbye,' that I passed away easily instead of suddenly become conscious + breathing. My life has not been easy. Or fair. I can't say I've had a good life, but I can say that what I've done with the life has been to do good for other ppl + animals. I just decided that if I can't have a good life myself, I'm going to what I can to help someone else, or animals. I have not had a life of happiness. Or health. But I feel deeply satisfied with what I've done to make the best of the hand I was dealt. Much of the time, what I needed came from God, not from Drs or others such as government. We have 8 Billion ppl now in the world. When you look at it in total, we who live in the Western world have our worst day better than half the world's best day. That being said, it doesn't change the experience that life is just really hard sometimes.
Praying for you.