Today's prompt: In regards to being a patient/health activist: What are 5 things that have changed your life? Were they events? People? Succinct moments or things that progressed over time? Feel free to write a few things that changed your life for the better or for the worst or whatever you think “changing your life” means.
*Connecting with other Migraineurs online via MyMigraineConnection, Facebook and blogs.
-This changed my life because I finally found people who validated my experience. They saw me, understood me and supported me unconditionally. And they still keep me afloat, daily.
*Reading A Third Space For Migraine Patients
-This article challenged me to find a third space: something that I am passionate
about where I push through the pain in order to find peace inside. I found that focusing on my love of
photography has helped me to get away from thinking about my chronic
illnesses. Just this morning, I got all bundled up to go outside because
the rising sun was casting a beautiful light that I could not resist. I
used to think that the only time I could get a break from my Migraine
would be in sleep. But now, I am transported through the lens of my
Nikon 5100 to a world of joy.
*Learning to listen to what I think of me and not what others think of me.
-This changed my life as I used to be a people pleaser. I did not want anyone to have a reason to say a bad word about me. I was very concerned about what others thought of me. This has changed dramatically as I have had countless episodes in public that in the past I would have found incredibly embarrassing. I know myself and I had to learn to trust that what I know my truth. Other people can create ideas in their mind about me: positive or negative, but that does not change who I am. Once I embraced this truth, I stopped being a victim to others opinions and became strong in trusting myself.
*Learning I had responsibility and a say in my treatment.
-Pre-chronic illness, I was very naive about the medical world. That combined with what I hadn't learned in that I was chronically worried what others thought about me was a mine-field when it came dealing with doctors. Learning that my health care is my responsibility and that I need to be the head of my health care team changed how I approach doctors. I used to let the doctor tell me what he was going to do and then would leave confused. I was too scared to ask questions. Now. I don't let the doctor leave until he has finished answering questions and explaining what I don't understand.
* Being accused of being a drug-seeker
-There are very few chronic pain patients who have gone into the ER who have not been accused of being a drug-seeker. So many people abuse the system that the the person who is not a drug-seeker is the exception rather than the rule. The second time I had been admitted to the ER four months into my chronic Migraines (and very uneducated about them-mind you), I had been guided by a concerned family member who was a RN to ask for a certain narcotic because I was in so much pain. My naive innocent 26 year old self was mortified when the ER doctor stormed out of the room and slammed the door. He called my neurologist who confirmed my condition and was much kinder and helpful when he returned.
But from that moment on, I realized that I had to approach doctors (and even pharmacists) in a different way). I have been in the ER many times (often not for Migraine, but since I come in with a Migraine they want to treat it). How I have dealt with ER doctors in the past is to say, "Please do not give me narcotics because that will only mask the pain. Toradol (an NSAID) has always helped me the most in the past." And I never get a raised eyebrow.
After my surgery in March, I had been told by my surgeon, after a phone call to him one night, to go to the ER immediately for stronger pain medication than he could prescribe over the phone. Even though my head had obviously been operated on, I knew I had to be proactive because I was going in and asking for strong narcotics. I explained to the ER doctor my situation and said, "I'd love it if you'd talk to my surgeon. His name is Dr. W and I have his number." The older doctor with a kind face smiled and gently said "That won't be necessary." And he gave me exactly what I needed.
I recently had a situation where my doctor had prescribed a narcotic but since I had filled it had told me to use it differently. When I called my pharmacy for a refill, the pharmacist refused to fill the prescription and told me "You've obviously taken more than prescribed." With his information, I had. He was very angry even though I explained the situation to him. Finally I said, "I would really love it if you would talk to my doctor." The moment I said that, he seemed to calm down. My doctor office got it straightened out. But you can bet that it stung to have someone tell me I had abused a medication when I absolutely did not. It felt very cruel to have somone not beleive a word I said because so many other people have lied. I am paying for someone else's sins. The bottom line is that I learned that since there are people out there who do abuse medications, people like me have to be extra patient, understanding of the doctor/pharmacist's perspective and be proactive when it comes to these situations.
-This post was written as a part of National Health Blog Posting Month -30 health posts in 30 days.