Monthly Archives: April 2013

Boston Strong

Strength & Determination

This we send to you

Know that you are not alone

 We all were with you when your life changed on that fateful day

In a few short days we watched a local, state, and national collaboration seek justice

The crisis is over and reality sets in; We are all now beside you

Across the nation we rally to support you and help you through this time

You will succeed! Life has changed and that has given you opportunities to seek new adventures

The ones taken from us will be remembered

Their laughter, innocence, determination and bravery forever is in our hearts

We are a nation that comes together

Remember you are loved and we are here

Life may not be so easy for a time and that is to be expected

Tears may fall, embrace them they are all part of your healing process

Anger may rise, acknowledge it and send it packing it too will pass

Remember there is a strength inside you that can conquer anything

Take our hands and we will follow you to this new future

Giving you more of what you need to make it

Strength and Determination

This we send to you

Medical Advocacy

This past fall I went to a conference in Boston and one of the panels spoke about medical care for people with disabilities. This made me realize that as a person with a disability it was important for me to stay up to date on my medical care. This promoted me to make my annual exam. I realized something that was not happening for me when I went in for regular doctors appointment was getting my blood pressure checked. This particular task is a bit of a project for me as I do not have arms and need to have my blood pressure down on my leg. When I was in graduate school I had a horrible experience with nurses who did not how to take blood pressure on me. And even worse were trying to make me go on medication when they didn’t know what they were doing. As it turns out they were not taking my blood pressure correctly and that is why it was perceived for me to have high blood pressure. That experience taught me to educate myself more about blood pressure and doctors responsibilities.

After that I did educate my doctors about blood pressure and how to do it on me but for some reason in seven years my blood pressure had been taken only once. I don’t have concerns about it but high blood pressures is in my family so it really should be happening especially since it’s a standard thing to do at an annual exam. Apparently though it is not a standard thing to do if you have a disability. So I went for my doctors appointment this week and I told them you haven’t taken my blood pressure in six years. The nurse was apologetic and then proceeded to justify why they hadn’t done it. They probably were too embarrassed to ask you how. The bigger question for me is why are they not educated. I except that with my disability I tend to have to teach the world how I do stuff or how things get done for me and I guess at a doctors appointment it’s no different. That day I taught the nurse how one does blood pressure on a leg. Explained to her that you can’t just use any cuff and I need to be laying down otherwise I will probably have high blood pressure.

For me this is then just a minor thing to have to deal with but other people with disabilities deal with more major issues. It is 2013 people with disabilities are not getting adequate medical care because of ignorance and lack of education. When I listened to the panel on medical advocacy it was outrageous the things that have happened to other people with disabilities around medical care .At this point in my life I’m thankful for the amazing medical care that I’ve received. I am also thankful that I have the ability to advocate for myself and have been able to avoid some major issues. We need to remember the doctors don’t know everything and as a patient we have the right to question them. They need to be able to give us informed information about our care. They also need to be providing us with the same care that they get every other one of their patients regardless if that means they need new equipment or education.