Coming down with a cold or a flu is miserable but also very common, something most of us have experienced one time in our lives. Being plagued with severe fatigue, body aches, migraines, anxiety, insomnia, and loss of appetite for months on end is a totally different ballgame. Most medical conditions, cancer included, are diagnosed and a treatment plan is put in place by your doctor. But what happens when your doctor has run every test in his playbook and he still has no idea what is wrong with you? That is where I found myself four years ago.
Doctors do not always have answers and this is why they call it “practicing medicine.” That is why today I still struggle with the above symptoms. I have been diagnosed at different times with fibromyalgia, depression, lupus, arthritis, rheumatic fever, sleep apnea, and the list goes on. My doctor is now treating me for fibromyalgia (for a lack of not having a clear-cut diagnosis) even though my body does not respond to the arsenal of medicine he has tried. I have spent thousands of dollars on co-pays, tests, and prescriptions. I was referred to 11 doctors over the years, with no concrete answers. I have spent countless hours in waiting rooms and had enough blood drawn to satisfy a village of vampires, with only more questions and a smaller bank account to show for it.
You may trust and even love your doctor, but if you can’t get answers or don’t agree with the answers you receive then you should seek a second or even third opinion from a doctor of your own choosing. I waited too long to seek a second opinion, thus wasting precious time in finding relief.
When you are sick it’s hard to explain everything to your doctor in the 20 minutes allotted for most appointments,so be organized going in. Write down your symptoms, medicines you are taking, any tests you have had, and any questions you want to ask. This is very important if you are seeing more than one doctor. If you can, take someone along to help listen and describe your symptoms; it can be invaluable. I know my mother was a wonderful help to me.
Searching For Answers
I have learned over the years to be my own patient advocate by reading and understanding everything I can about my symptoms and the medicine I choose to take. I learned that most medicines’ side effects made me sicker than I was in the first place. Now I visit the drug maker’s website and read the adverse reactions others have had on a particular medicine before I consider taking it. If you are taking multiple prescriptions the drug interactions can be severe. My pharmacist has also been a great resource and is easily reached by phone.
I research on the internet my symptoms but only on trusted websites like Mayo Clinic. The internet is a very useful tool, but I strongly caution on using only websites that are trusted. If a website is trying to sell you something, then beware!
Four years after becoming sick I still have very bad days, but lately there have been some good days too. I have learned to adjust my life to fit my illness but I am still seeking a path to wellness. I will continue to research and see my doctor, but most of all I remain the best patient advocate for myself.