A Patient's Rights

Patients have rights when it comes to medical care.  When it comes to individuals with chronic illnesses there is a fear that if we try to take more control of our care we will loose medical professionals support.

This fear often increases because of our contact with emergency care.  We know our bodies better than anyone else and when we are at a point that we cannot manage at home we attempt to go to get care.  This happens a lot of time when regular physician offices are closed.  It also happens because it often takes years before we learn what is really wrong with us.

Physicians in Emergency rooms are there to stabilize patients and to help in acute situations.  Those episodes that we cannot handle at home are acute and yes stabilization is something that we need.  Yet, here is the problem there are people that are attention seekers and pill seekers that over abundantly use emergency care.  The government has really cracked the whip on physicians when it comes to managing pain.  A lot of the flareups that we as individuals with chronic illness have involve pain.  Therefor physicians due to government regulations and the abusers have started to be leery of treating patients with chronic issues.  Is this right, no. Yet it is reality the best way to get care is to establish a team of physicians that can build a relationship with you.

So now that I have gone over why we fear the way we do and why some physicians act the way they do.  Let's get on the positive side of things.  YOU HAVE RIGHTS.  That is how simple it is.

1. You have the right to choose your physician.
2. You have the right to change physicians if you are not getting proper care.
3. You have the right to seek second opinions.
4. You have the right to get professional care.
5. You have the right to be listened to.

I want you to understand that having rights doesn't mean that physicians are going to be able to cure or treat every ache and pain.  If that was true I know my GI would be curing every case of Gastroparesis that he could.  My ENT would have stopped my spins way before now.

So there is a fine line and you have to walk carefully on it.  There are times that shopping for the right doctor is the only thing you can do.  When you are not getting diagnosed and getting sicker and sicker you need to see if there is a specialist you can find.  Yet, when you have a physician that listens treats you the best they can don't get frustrated and doctor hop because they cannot make you any better.  

There comes a time when you are being treated when you realize that you may physically be at your best. Then comes the next part, what do you do then.  When you have a chronic illness this is something that people have to eventually face.  Yet, here is what I want you to know you must understand that you have to keep hopeful.  The physical part of the illness is something controlled by the body but the feeling is something you can control.  You can allow it to kill you or choose to do all you can within your new limits.  

Know that the limits will change and you will have to get used to new limits as time goes by.   I know that I had a hard time dealing with this.  My favorite line is I am too Young to have this happen.  Isn't that what we all say no matter how old or young we are.  We think of all the things that we hoped to accomplish and have to face that we might not get them all finished before the end of our life.

I want you to know about a second set of rights that you have that are often harder to understand.  If you want to live life to the fullest you need to understand these and choose which ones you want to utilize.

1. You have the right to cry.
2. You have the right to smile.
3. You have the right to be mad.
4. You have the right to laugh.
5. You have the right to rest.
6. You have the right to play.
7. You have the right to be alone
8. You have the right to be with loved ones.
9. You have the right to be sad
10. You have the right to be happy.

Here is the thing you will pick and choose which one or combination of rights you use on a daily basis.  There are some that work better together than others but they are all your rights.  Remember it is the way you use these rights that people remember.  So try your best to use the ones that will help make the best memories for you and your loved ones.  On those days that you have to use the others don't be angry with yourself because it s okay to not always be at your best.  People that support and care for you will understand that you being you is the most important part.

Blog posted and now it is nap time.  Crazy thing about all these rights are that they apply to everyone.  So pick and choose carefully until next time.

For my fellow fighters keep on fighting and remember one day they will figure this out and we will have won.  Until then don't give up hope.  It is okay to rest on bad days,  but on the good days enjoy life to your fullest because you deserve it.    

There is so much more and remember this is something that I live with and am writing from my perspective.  Talk to a doctor if you feel you may have this or any other disease because without proper diagnosis you will never get the treatment you deserve.