I yearn to go back to the days where my mom would get out that trusted old syrupy bottle of cough syrup from the kitchen cupboard, (the one where the the lid was completely crusted over from some previously dried up medicine), and she would dump a bunch of it on a spoon, and bring it over to where you were lying sick on the couch. Often, I would be all cozied up under warm blanket watching ‘The Price is Right’, or whatever show was on that I usually missed because of being in school. That feeling of being taken care of, and knowing that the medicine would make you feel better, that mom’s can fix anything, is something that miss now that I am the mom of a family, and now that I have a chronic health issue. That one bottle of medicine, in all its syrupy glory, seemed to fix everything. I trusted it. I trusted my mom. I trusted the simplicity.
Things have changed a lot since I was a kid, lying on the couch watching ‘The Price is Right’. As a paramedic I became the fixer. As a mom I became the fixer. As a wife I became the fixer. But who was fixing me? I won’t lie, I still rely on my parents to help fix a lot of things in my life. They are there to help me with the kids, or to keep me company if I am not feeling well and my husband is working. They take me to appts, and they help calm me down. They are still my superhero’s in more way than one. But, there is literally no safer feeling that being 8 years old, lying on the couch, knowing that you don’t have to worry about anything at all, because your parents will make your sickness go away. That is the scary thing about growing up, and being diagnosed with an illness. Your parents just can’t make it go away like they used to. You can’t just drink the syrup and feel better. No amount of watching ‘The Price is Right’ will fix you. The doctors that always seemed to be able to fix every cough you had, now scratch their heads in bewilderment. You feel, alone. You realize that your parents, and doctors, are only human, and don’t always have the answers. Everyone starts to lose their superhero status, and you have to hope for more powerful forces to help you out.
And one day you’ll realizeLyrics from Brantley Gilbert, Song ‘Man that hung the Moon’
I’ve lost my cape, I can’t fly
And I’m only human
And you’ll need more than me
But you know to hit your knees
If I’ve done my job right
You’ll know where to find the man who really hung the moon
It took 2.5 years to get my Postural Tachycardia diagnosis, and it has been 10 plus years of learning how to manage it. I now have something else going on, and the cycle of being shuffled from specialist to specialist, and hospital to hospital, is well underway again. I no longer have a cough that can be cured with medicine. I am a guinea pig spinning on the wheels of a cage in a medical laboratory. The best anyone can do, is to offer up a medicine to ‘see if it works’. I have a history of being sensitive to medications, so being handed a new medication scares the hell out of me. Having a bad reaction to medication, makes you fearful. Some days it takes over 5 days to build up the courage to take the first pill. After taking the first pill, I spend the next 2 hours worried about having an allergic reaction, and then I spend the next day worrying if I will have any side effects. That is only on the low starting dose too! Don’t even get me started on having to bump up the dosage. This is all for a medication that I am taking to “SEE” if it helps.
I am a firm believer of not taking a medication unless I know what it is for, and why I need it. I don’t like the bandaid solutions. What I mean by bandaid, is that I don’t want a medicine to take away my pain without knowing what is causing it. I want to know why I am having the pain, and then I want to fix that. If I need some medicine after I know what the problem is, and this is the fix, then so be it. So I really struggle with taking something that is for management of an ailment that I don’t even have a name for, and no doctor can figure out.
I also dislike the idea that a medication can take months for it to “start’ working. Oh, and during that time you also get to have a whole host of awful side effects. BONUS! When you feel awful all the time to start with, the idea that you will be taking something that will make you feel worse, before you get better….well that is a tough pill to swallow. Literally, and figuratively.
What I want is to reach into my cupboard, pull out that crusted over medicine that fixed everything as a kid, and feel its magic again. I want to take that one spoonful, with no worries, and feel better. I want my mom and dad to fix everything. I want to bound out of the house the next day, feeling rejuvenated. I want a diagnosis. I want my life to revolve around living. My calendar currently revolves around counting down the days till my next specialist appointment, and the disappointment or hope that follows. I want to travel, explore, and work on finding happiness in the smallest of corners. Having answers, and a way to manage something that right now is invisible , makes life possible. I don’t want to be scared anymore. I don’t want to live cornered by the fear of having a flare, or the fear of starting a new medication. That is not living. So I will continue to take the new medications that scare me, and hope for the best. Maybe this time, this one medication, will be the one that helps me turn the corner. The one that allows me to take a seat at the table of life. It’s time to hit my knees, and pray for healing, and pray for life. It’s time that I stop putting the superhero cape on everyone else, and put my own cape on, and become the maitre d of my ownlife. One reservation for life please .