Many times we are not on the quest for this to happen. Rather, it seems to fall upon our doorstep as an unwelcomed present. No one asks for sickness, chronic pain, or debilitating illness. But, sometimes it happens. As I previously wrote about, I was a year and a half into my battle with full-body RSD/CRPS when I realized I needed to stand up for myself and fight. It was not easy. And at times, it was just down right HARD.
- Enlist The Help of Others: When I first started this journey, I was too sick to do most things on my own. I was happy just to feed myself, much less fight for my treatments. So, I relied upon the help of my mother (and my husband after we met-and-married). Have them come with you to all appointments and be your voice when you don’t have one.
- Know Your Insurance: The last thing that patients should have to do is to fight with insurance companies to get a treatment covered. Unfortunately, that is what many have to do. Talk with your representative; involve the person you turn to for help, and try to get on outline on what is covered and what is not. (Is there a co-pay for ER Visits? Will you cover ketamine if in a hospital? Ect). Do this on one of your “good days”. It will save you stress later on!
- Get Organized: There seemed to be a small forest of paper work when illness comes knocking at your door. Get a filing cabinet and keep records. Extensive and detailed records. It will save you money when the hospital/doctor’s offices double bill you.
- Create an Emergency Medical Binder: This is critical for staying on top of things. When I had flares that required hospital stays, I was not able to use my arms or legs. My speech, because of the extreme pain, was nearly incoherent. So, having this binder really saved the day. It also helps with filling out endless paper work at offices. Hand them your medical history and medicine list and be done with that part. (For a How-To Guide, see this post).
- Start Reading: and don’t stop. Even if your medical literacy level is low (MINE WAS!), there is always places to start. Two of my favorite resources for RSD/CRPS is RSDSA and RSDHOPE.
- Grow a Backbone: Harsh sounding; I know. This was the hardest for me. I am a people-pleaser to a fault. So, when there were doctors giving me the run around (see the post about my Misdiagnosis for a Medical Horror Story), I tended to forgive them and stay with them. But, patients have rights. Rights to be treated fairly, to be given medications, and rights to be human. FIGHT FOR YOUR RIGHT!
- Keep Your Good Doctor: Despite the horrific doctors chronic illness patients come across, there are also some AMAZING ones out there. Stick with them. Bring them research articles. Ask questions. You and your doctor are a team! And thank them for their job well done.
- Don’t Give up Hope: One of my mother’s favorite sayings during this time (where she had to care give to her eldest daughter) was “we have another one coming…” Whether it applied to doctor’s appointments, treatments, or my ‘research’ on changing my diet to an Anti-Inflammatory Diet- she kept those words close by.
For more information, please see this fablous YouTube Video that RSDSA produced for becoming your own advocate.