Being Your Own Health Advocate!
 

I just wanted to start an informal poll on:

I was wondering how many people really believe in being their own health advocate?

I'm not saying doctors are not necessary and that we shouldn't listen to their recommendations, but how many people go to their appointment with questions written down, so all questions, can be answered?

Hi 2B: I have been a long time health advocate for myself. My brother is even more proactive than me. If I listened to doctors advice without question my son would have died at age 12. Also i spent my career in insurance and had heavy exposure to the medical field and the legal field and it creates a gun shy approach for both disciplines. You are wise to be proactive. In addition the requirements under ACA are such that it is even going to be more essential to pay close attention to your records.

I do. His nurse asks for any problems, I give her my notes, she reads the notes and enters them into the computer. He comes in, has already seen my notes on his computer, and takes it from there. I don't want to waste his time and he does not want me wasting his time ............... all good.

Whoops!

All 2B did was ask a simple question. And I stepped right up on my soapbox and went into quite the soliloquy about believing in being our own advocate and advocating for those we love. And then I started advocating for nurses -- who I know can save lives -- and end up too often being treated like you-know-what by some patients.

And then I was trying to look at what I had written so far and was planning to continue and say how I have always thought there needed to be people who could be hired to help those who have no one who can be with them while at the hospital or important doctor appointments. And how I hope if someday our family cannot help each other, we can find good people to hire.

And on and on I had gone and had planned to go and THEN I hit 'submit' instead of 'review' and there it was. But only part and then I took it out and put in this. Because I gotta stop.

Can you tell I am supposed to be working on taxes?

I agree with every word of this. People in pain and on medication need to be watched at all times by someone who cares deeply, no matter how good the professional staff is. We took turns staying with a divorced person who used to be part of our family because he had no one.

I have spent weeks and weeks with our Helene in hospitals. Not very many screw ups at the wonderful second best Children's Hospital in the whole country, Cincinnati Childrens. But once I stopped an incorrect medication from being administered.

Also people in pain or in stress or worried about themselves are often not coherent or using the best judgment.

Ask any nurse or doctor.

Oh, gracie, you are a fast one, you are. I had hit the wrong button. You captured it before I could regroup.

Go back and take a look at what my Post #4 says now -- completely different. (You see, I knew I could preach all day and I was stopping myself by getting rid of the part you caught. -- though I stand by every single word of it. I just knew it would turn into a book.) Hey, it's OK, and it is funny to me to see this happen to my post. -- You sure are fast. :)

And, now, I really, really, really must stop this and get something done.

////////

Not sure about being my own advocate, but I do know I only follow through with about half of what my doctor tells me. Non-compliant patient is me (and Elaine Benes).

I'm told I need X, Y, and Z. Eh, I dunno. It's mostly endless tests and prescriptions that may or may not help prevent a condition I may or may not get. My primary care doctor's first inclination is to refer me to a specialist for every dratted thing. Mostly I decline. There's so much health information available online now that I'm done taking any doctor's one-size-fits-all word for anything. It's my decision to make, not theirs.

I honestly think a lot of doctors have gotten carried away with "preventive" measures (in quotes on purpose) and shielding themselves from lawsuits by testing and over-prescribing.

I definitely think you need a health advocate. My husband and I go to all appointments together and hope at least on of us catches everything that is said. After both of us have been given so many different meds, I now question EVERYTHING!

I have a brief medical history, list of doctors, list of current meds and a list of surgeries for both Betsy and myself as a .pdf file on my cell phone. I also keep medical and financial POAs, advance medical directives, HIPPA designations, and several other legal documents on my phone. Why? In an emergency you will forget to bring along a large file folder with all of that stuff with you. I bet that you will grab your cell phone.

Password protect it if you feel it is necessary.

I learned from Betsy's hospitalizations that you never want to leave decisions in the hands of the folks at the hospital. They may be nice, but they don't have as much at stake as you do. Also keep in mind that in the middle of the night, you are likely to encounter the least experienced (and most overworked) medical staff. I have stopped nurses (and doctors) from doing very dumb things and have demanded that nursing supervisors and doctors be called, even if it is 3 am.

Before I get the medical folks upset, I worked as a medical surgical tech (including ICU and ER) in an inner city hospital for 5 years, flew medivac in the Coast Guard, and did a tour as a medical administrator. I have a great deal of respect for medical folks. But I also know some are better than others.

Oh yeah - have a full and complete discussion with the folks who are your medical powers of attorney about what you do and don't want. If they can't support your wishes, they are the wrong folks.

If you are a medical POA, keep one or more people on speed dial who you trust and discuss what you are doing to do - they can't make decisions for you, but having a sounding board will help you make better decisions.

If things start to get to you, go in the chapel and pray, cry, or whatever. Then go back and be strong for your loved one. Much of the time Betsy was in a coma, I kept singing "Just Keep Swimming" from Finding Nemo - The Musical to her. She doesn't remember it, but it helped me to keep from going crazy.

YOU know your body better than anyone else....YOU are the best doctor you will ever see!!! Yes it is good to consult with someone else (a Doctor), but never forget what I just told YOU.

Some excellent advice here.
The last paragraph is very moving.
Biz doc, you're a good guy!

There was no lump to feel when I had cancer. I had no symptoms of hyperthyroidism but if left untreated it could cause dangerous arrhythmias of the heart.

Only the nice tech who is wonderfully non hurtful at taking blood at the Quest lab can send your doctor the results of the blood tests that to my eye only look dark red.

I thought I knew my body pretty well, but it wasn't telling ME what the experts knew how to find out.

If you decide you don't want a colonoscopy then you have to live with the lack of knowledge about your innards.

I question my doctor, and sometimes I doubt him, but he is better at what he does than I am in figuring out what is happening.

But oh how I miss my doctors from Ohio.

In advance, sorry for the long post!

Advocate, advocate, advocate! Do your own research. Ask questions. If you have cancer or any other life threatening chronic illness, make lifestyle changes to your diet and exercise and take appropriate supplements. If something sounds wrong, ask for another opinion. And another.

Why? Doctors mess up sometimes. Sometimes more than one doctor messes up with the same patient. Like this:

1. So sorry, Sheldon you have stage IV lung cancer and only six weeks to six months
2. Oh, no our mistake, it is fast growing stage IV mantle cell lymphoma, we'll stick with the six months to maybe two years
3. Oops, never mind, it is B cell lymphoma, we may be able to fix that. Boy, we sure are glad the chemo treatment is the same as for the other two misdiagnoses
4. You are in complete remission! Yay!
5. Oh, sorry, you are not in remission, your cancer metastisized into brain tumors
6. We can fix that with gamma knife!
7. Oh, sorry, we can't fix that with gamma knife, you need whole brain radiation
8. You may never walk or talk again because the tumors were so large

The times he was in the hospital I moved in too. I stopped a nurse from mixing two chemo drugs in his IV line that would have killed him. I hunted down nurses, and sometimes doctors. I asked questions, and more questions. I said no a lot. I said he needs help a lot. I cried a lot. I got mad a lot. I was in the cafeteria and saw the doctor that said Sheldon had stage IV lung cancer and I managed not to choke him. I told some nurses to leave his room and never come back. I brought some nurses gifts, they were so angelic. It was a long roller coaster ride and I hated every second of it. But if I hadn't been on that ride with Sheldon I can say beyond a shadow of a doubt he would be dead.

It took Sheldon six months to go from using a wheelchair for taking more than fifteen steps clutching the wall to running up our long driveway with a twenty pound sledgehammer. He worked his ass off to get there.

He ate so clean he lost forty pounds. He quit drinking, quit eating sugar of any kind, quit eating any meat except organic chicken and fish, did yoga, meditated, drank tons of water and carrot juice, and took supplements, lots of supplements. He learned to juggle scarves to train his eyes to work right again. He did Lumosity games to train his brain. The sledgehammer was to help with his balance issues. So was the Bosu ball. The doctors recommended NONE of this, despite us asking numerous times if there was anything we could do to help fight the cancer and its effects. The closest they came was saying that sometimes a plant based diet seems to help.

If you don't advocate for yourself, learn for yourself, take care of yourself, you are putting yourself at the mercy of people. Fight for your health! It is your most precious asset.