You are your best advocate

Update:

I am very pleased that on my latest CT scan there was no new evidence of cancer and the small nodules they are monitoring in my lungs remained unchanged. The longer they remain unchanged the more likely they are not cancer which is the best news we could hope for.

As far as MS I am still struggling with the same issues but am managing fatigue a little better. I stopped taking the first medication Copaxone in mid June due to fatigue and depression side effects. I plan to start a new medication called Rebif soon. It also requires an injection 3 days a week and carries with it a long list of side effects. There are several types of MS medications that are all designed to slow down the rate of relapses. I am not too excited about any of them due to side effects but I am trying t

o remain hopeful I can tolerate the new medicine. I have an appointment with an MS specialist at the end of August to further discuss my situation.

Advocacy

Doctor’s only know what they have learned or experienced. Their job is to give you the best advice based on what they know.

I am not anti-doctor or anti medicine but I do believe we put too much trust in a medical community that simply doesn’t have all the answers. Our lifestyles have changed dramatically over the last 30 years which means the diseases we face today are different and our expectations are also different. Much attention has been put on prevention and making healthy lifestyle changes but the truth is most of us would rather pop a pill to fix our problems.

Don’t misunderstand me. The medical industry has done great if not miraculous things for many people. But there are many, many people still seeking answers. There are a growing number of people, including myself, that are taking charge of their own health and seeking different answers. I am speaking from the perspective of someone who is facing issues that cannot be cured or fixed with a pill or any type of medicine, but that doesn’t mean medical care and doctors are not important.

It is up to each of us to advocate for ourselves or for those that we love. If the doctor you are seeing does not have an answer for you, if you don’t agree with their assessment, or something just doesn’t feel right you have the right to ask questions, seek a 2nd opinion, or look elsewhere for help. Here are a few tips that might help you navigate your medical journey a little easier.

1. Ask questions, ask questions, ask questions! Prepare some questions or topics to discuss before an appointment. You only get a few minutes with the doctor and you don’t want to forget something important.

2. Take someone with you to appointments. It is sometimes difficult to remember everything and another ear in the room is very helpful.

3. Keep a copy of your records! Ask for copies of lab work and reports while you’re at the appointment. This is very helpful to refer back to and when visiting multiple doctors and you may be charged if you request a copy later.

4. Become familiar with your insurance benefits. Today most plans have plenty of wellness benefits that cover annual exams and things like chiropractor visits and acupuncture. Also be cautious about providers especially during surgery. Sometimes hospital physicians like an anesthesiologist are out of network and you may be unaware.

5. Check your medical bills carefully because mistakes are common!

6. Do your own research (doctors love this one J). Educating yourself about medical concerns can help you better communicate with the doctor. In the age of instant information there are some things doctors may not be aware of. You may also find your doctor is very knowledgeable.

7. Find something you can do to help yourself. Waiting and feeling helpless are 2 of the toughest things to deal with during an illness. You can read books about your condition, journal about your feelings, start meditating, learn how to juice to offset side effects, get acupuncture, and much, much more. You might not be able to control your situation or the near future but you might find something that can help you feel better right now.

I learned a long time ago the wisest thing I can do is be on my own side, be an advocate for myself and others like me. ---Maya Angelou