Doctors That Are Patients, Too

NeuronsAll too often, people that live with a chronic illness have a difficult time explaining to their doctor what their pain feels like; the fog, the numbness and tingling, the fatigue or whatever symptom they happen to be experiencing that week. We tend to become frustrated because we see the looks that a doctor gives us, most likely because our explanation doesn’t sound anything like they are described in medical school.

We as patients though were never taught how to properly describe a symptom; so basically going into an appointment can be like going to a convention where no one speaks the same language – which ultimately leads to nothing but confusion and frustration, and a lot of wasted time.

It’s extremely rare to find a doctor that understands exactly what we’re talking about. Unless, of course, they actually live with the symptoms we have been experiencing.

If you live with Multiple Sclerosis, you may have heard about a doctor named Terry Wahl, MD. She is the inventor of the “Wahls Protocol” (Amazon, Paperback $10.97), a diet she created to help stave off her symptoms of her progressive MS (which worked wonders for her), ultimately hoping to help others MSer’s do the same.

More recently, I have learned about Vincent F. Macaluso, MD. He is a neurologist that was diagnosed with MS while he was going to Medical School. Understandably, his specialty landed toward Multiple Sclerosis after school; and more recently he wrote a book called, “Multiple Sclerosis From Both Sides of the Desk” (Amazon, Paperback $24.73 USD)

Dr. Macaluso stated in an interview (below) that having MS influenced his practice, not only because he can relate to his patients in more personal manner, but also because he knows what alternative medications can be prescribed to help some of the symptoms. One of those medications, normally used for Attention Deficit Disorder (ADD), helped him finish his new book, because it was able to help him with the weak focus that is commonly found in patients with MS. In writing his book, Macaluso said he hopes to encourage clinical trials of similar drugs for MS, and spread awareness of the realities of MS patients among his colleagues, and MS patients and their families.

After hearing what Dr. Macaluso had to say in his interviews, I’m really looking forward to getting a copy of his book for myself so I can hear what else he has to say. Check out two of his interviews that are posted below:

  • Interview #1 – with Vincent F. Macaluso, MD; Credit to: Fox News Health

(Unfortunately, I was unable to embed this video, so please visit the link below to see the full interview with Dr. Macaluso on Fox News Health):

Fox News Health | Interview with Vincent F. Macaluso, MD

  • Interview #2 – with Vincent F. Macaluso, MD; Video credit to: Fox5NY 

If you do happen to get a copy of his book, come back and let me know what you thought… I’d love to hear your reviews!
Good reading!

When I Grow Up, I Want To Be… Disabled?

bobby-car-349695_960_720When we were children growing up, our parents told us that we could be whatever we wanted to be – A firefighter, policeman, doctor, nurse, lawyer… even the President of the United States! They told us that all we have to do is work hard to achieve our dreams by being honest and kind, do our homework and chores, and eat all of our vegetables.

Our imagination went wild because of that, too. We happily acted out our futures with our teddy bears and dolls how we wanted to make the world a better place; even imagining getting married and having babies of our own one day.

Never has a child told their parent, “When I grow up, I want to be tired and in pain all the time; have sleepless nights and spend lots of time and money in the doctor’s office and at hospitals. I want to take all kinds of pills that have the possibility of killing me; and basically gamble on my quality of life.”

One day you wake up though, and suddenly your life has turned out this way. You thought you did the best you could to take care of yourself, but you didn’t realize that chronic illnesses didn’t work like that.

You start visiting doctors to see what’s going on with you, and if you are really lucky, you get a diagnosis right away. But, if you’re one of the less lucky ones, you are forced to spend years of your life returning to the doctor over and over again, still without any answers… Maybe you even get pushed into categories like hypochondria or psychosis because they think you’re just making everything up. They may even tell you that it’s “all in your head”.

One day, the career that you did have is suddenly over way before your retirement age. Your family dynamics changed completely, and your family is now having to take care of you! A role you are definitely not accustomed to, nor comfortable with, but have no choice but to accept.

Sometimes, even the closest families break up because the financial and emotional stress of someone they love being sick and disabled is devastating and overwhelming. Or worse, they think we somehow chose to be sick. Crazy, but sadly, it happens.

Then, of course, there’s the fight for your disability payments. People that complain about the DMV should try filing for permanent Disability. You see, it doesn’t entirely matter that you have three or four doctors telling the government that you are permanently disabled and unable to work. No, Social Security has to have perfect records (which most doctors don’t keep to their expectations), explaining your limitations all the way from how long can you sit/stand, to how much weight you can lift at a time. If they don’t keep these types of records, the SSA has no issue with denying you, no matter how sick you really are.

Lives are destroyed because of this. Too many people losing everything they worked hard their entire lives for–while no one in our government has done anything to change this atrocity–except try to take more away from us.

Never has a child told their parent that they want to be a divorced, disabled, homeless person when they grow up.  But sadly, too many lives are becoming just that.