Why is it that those designed to help us tend to hurt us most? Family and friends that don't get it. Or worse off, medical doctors that don't get it and cause MS stress. I recently posted that my doctor just told me they were missing about seven years of medical records. What I found out recently was that they are missing all of my records from my first neurologist. That's some 10 years of records. They've been treating me for three years telling me they have my history and records but come to find out this week that they have been lying. In addition I can't seem to get my doctors to call me back. I left six messages in total last week for two doctors. I finally received a call back from am assistant saying they were going to call me back. I guess the question is, can someone recommend a good neurologist in the Pasadena area?
And what's so frustrating is that I finally found a doctor that seems to get it. But without a call back its very frustrating. My other neurologist would call me back by the end of the day. This is rude. And of course it's now Saturday. No time for them to call me until Monday. Another stressful weekend caused by doctors unwilling to tend to their patients.
Then the family. Got to laugh at them sometimes. We want so much for them to get it. For our folks to say, wow, I totally understand where you're coming from. Instead they are mostly clueless. "We'll, you don't look sick". "You have pain? I didn't know you were ever in pain". Or best yet "of course you can do it, MS is just a figment of your imagination". I've heard it all. And that's from my closest family members.
They make plans and expect us to follow. Despite how we feel or how we want to manage our disease. Shouldn't it be us who makes the decisions? Shouldn't doctors call us back when we have questions? Shouldn't our loved ones simply accept our guidelines and boundaries?
One would like to think so. But alas, it is family and friends that so often let us down. So often they put their own feelings ahead of ours despite our illness and our needs.
People say we our spoiled. Wanting our way to make our lives healthier and easier. I call it setting boundaries. And boundaries are one of the best treatments for MS. When we set boundaries we are recognizing the importance of our disease. It's identity and its existence in our body, mind and soul.
Right now I'm setting boundaries. Making yet another list of questions for the doctors if they return my call next week while recording lack of actions over the past two weeks. In addition I'm looking into other medical options in the area and continuing to pursue my lost medical records. I didn't need this stress. It would have been fine to just go into the weekend with all of my questions answered. But that would have been too easy. That wouldn't have been the MS way.
While I can't replace my family too easily the medical team requires some adjusting. I need a team that will help me get healthy. Not a team of clueless twits. Which seems to be my surroundings lately. Clueless twits.