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Childhood Brain Tumor/ Appointment w/Mayo FL

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

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I am in an emergency. I have gone to many university hospitals(6-7 plus many in my local) I can't get off my couch & do the basics of everyday life. I get told I'm complicated and passed on. I've lost a lot of faith & very close in giving up. One can only take so much on top of the nastiness I've received from doctors because they can't figure me out so they give up. So I would say this is an emergency. I have tried to have a positive attitude throughout the years but when you can't even barely take care of yourself such as shower, brush your teeth get your haircut shop or even perform the daily basic activities of ones life that's a huge problem. The debilitating fatigue, hormonal issues, pain, severe depression and more are unbearable. So to to contact Mayo & get my records together was very difficult but travel there is going to be even more difficult because of what I mentioned above and for me to even try & go anywhere else out of state would be virtually impossible because of how bad I've gotten. I've done this record thing many times trust me I'm a pro at this. It's just when you've been to many university hospitals and they don't know what to do with you it's disconcerting. Just because a doctor or doctors have all these degrees etc means nothing if they can't help me it means nothing. Ive pretty much stepped back from everything if I get in I get in. I've been getting along so far & when I've had enough then I'll stop totally.

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Replies to "I am in an emergency. I have gone to many university hospitals(6-7 plus many in my..."

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..