Christmas?

            “I don’t want a lot for Christmas, there is just one thing I neeed…” Mariah Carey belts out as I sit here typing out my pent up frustrations into words.  No it’s not Christmas, its not even December, its May.  So why am I listening to Christmas Carols you may ask?  Well have you ever listened to hip-hop while you work out?  Or sad music when you have a break up?  Music creates emotional responses and sometimes I use it to counteract negative ones.  Christmas is the most wonderful time of the year, people are happy and kind and there is something to look forward to.  Most of the time life is not so magical and kind.

            Currently life has knocked me down and is doing its best to keep me there.  My body doesn’t function like others do.  My autonomic nervous system doesn’t work properly.  Your autonomic nervous system controls all the functions of your body that you don’t have to think about, they just happen.  For me my blood doesn’t circulate correctly, my heart will suddenly hurt and race.  My muscles and joints ache and there is an all over pain that I can’t quite put my finger on.  I get sick when I eat and sometimes I have random allergic reaction to things that I didn’t have any trouble with the day before.  Most of all I pass out so often that for the past two months I’ve been bedridden.  I have a syndrome called P.O.T.S. (postural orthostatic tacacardia syndrome).  My syndrome is actually not as rare as it may sound, but so little is known about it that many people go undiagnosed and the few of us who do get diagnosed usually spend years waiting for answers not to mention many doctors telling us we are crazy.  After all that there isn’t much that doctors can do for POTS patients.  There are some medications called Beta-blockers that can help with keeping your heart from racing.  These medications seem to help to some degree with most patients but it’s far from a cure.  So if you’re lucky you get diagnosed, start taking meds and get better enough to grin and bare it, you may even be lucky enough to hold down a job or go to college.  Some aren’t so lucky.  I guess after 21 years I had grinned and dealt with it for too long.  I’ve had the symptoms since I was 18 months old and they’ve only worsened through the years.  I wasn’t diagnosed until about six months ago but my mother (a registered nurse) had told me when I was about 12 that she was sure I had POTS.  Smart mom, right?  Too bad it took about a decade of failed doctors appointments and hospitalizations for someone to figure out what mom already knew.  I really didn’t want this diagnose though, because I had done enough research about POTS to know that there wasn’t much to be done about it.  Little did I know getting help would be harder for me than most other POTSies.  I also happen to have a condition where I don’t metabolize certain medication correctly, so if I take the meds that are on the list of no no’s the drugs will build up in my system and become toxic.  Unfortunately all beta blockers are on that list, which explains why when I had taken them in the past they would work for 4 days and then I would start passing out more.

            Dealing with all this on a 24/7 basis can be incredibly frustrating.  It takes over my life and dictates everything.  I can’t make plans, I can’t do much more than distract myself from the pain and discomfort.  Sometimes it feels dark and hopeless and like nothing good is going to happen.  So to counteract those feelings I listen to my favorite Christmas carols from childhood and it takes me back to a place where I can remember that my life has been good and worth living.  Even though I feel incapable to the task at hand and wonder why I even have to endure it, I remember that it won’t always be this way.  And if Christ can come to the earth and be laid in a manger and suffer not only for our sins but our afflictions, our pains, our aches, our self doubt, our fear, our feelings of inadequacy, then can’t I at least make it through the next five minutes?  And then the next. And the next.

            And although I may not want a lot next Christmas and the one thing I do need is my health, that doesn’t mean I want it more than I want what God has planned for me.  Because if someone with all knowledge offered to keep you in their care if you just trusted them wouldn’t you want that more than trying to do it on your own?