Still standing despite everyone’s’ best efforts

Some where it is written that it is the day to day things that kill you, the outright attacks and crisis are acute in nature, they come they rage for a moment and then they are done.  It is the day to day things that make it difficult to continue.  It is rough to reframe your life as it is now after the acute crisis.  One day you are a working single mom struggling to pay the bills and keep the kids feet in shoes.. why kids feet out grow they shoes so quickly is a mystery.  The next day the crisis drops.. “Oh I am so sorry but your test is reactive”  well what does that mean.  Not sure yet.  I understand better now what that means then I did that night last March, sitting on the side of my bed talking to my PA on the phone.  But not sure what it means all the way around the day to day activities.  I went to get my blood drawn, next week I have to see the HIV doctor and it is always nice to get your lab results when you see your doctor so off I went.  I know have bruises on my arms and hand from where the lab tech – nice women – tried to get the blood out of me. Anyway, I spoke with my case manager for a moment and we spoke about side effects.  As I have had three doctors in the last year as two of them died, my file is not as cohesive as one would like. So he asked me if I have side effects that make me sick enough “just three days a month”  just being the main word there.. the answer is no.. the detailed answer is that there is a good day just moving along like I own the yellow brick road, then there is the oh I feel like crap day when I can take one or several of the PRN’s to combat the crap and then there are the I am stuck in the poppy field days where the good witch cannot even reach me with her magic snow.. just leave me here and go on without me.  When my son comes to my room during these times and says to me “Mommie how long are you going to stay in bed?” Nothing cuts through your soul like that statement.. then I remember it is the day to day struggle that does most people in, not the acute message.  My case manager starts speaking about how three days a month is not that much for sickness but that medication change might be something to look into but, how is the medication working lab wise?  Well it is not three days a month, last month I was out from the 18th of March till the 2 of April, worked two days then the next day I threw up in my sleep as I was waking up from that sweet little experience, so that day was lost.  Not working half a month doesn’t get you paid. Not for short term disability even if my work placed offered it.  What it does get is a person fired. So two things I learned that day.. that case managers donot always inform you of everything, and that there is a certain level of crap that we are expected to live with.. that is true for everyone.  It is not a competition, it is just different.  Where I used to just be a single working mom, now I am a chronically ill working for now single mom struggling .. just struggling.  And when it gets to the point where the lost in the poppy field days out number the skipping down the yellow brick road days, that is when you figure out the day to day struggles of living.  There are things that mean more now that my mortality is in sharper focus, that is true of most people facing an acute crisis.  I always did believe that being thankful for the moment you had was a good deal as it doesn’t happen for everyone.  Now when I hear laughter of my youngest children or see the big red moon and the shining stars I am there..I am also strung out on so much stress that it is a short fuse at times.  My oldest children all know about this chronic illness, they all tell me to stay away from buses..but they are still young people. Their lives rotate around only them at times.  They are well rounded and raised to go out and experience all they want to experience and raise the bar, perhaps it was trained in them too well.  I am not sure. I am not able to work, do the housework, raise the kids and have friends.  Some days I can barely get out of bed, literally, and if I do I fall into the damn wall.  And how do you inform your friends that you have the one thing that they are most afraid of?   So it is raising the kids and working that maintains my focus but, when one of those things fails due to inabilities to even get up.. how am I suppose to maintain the balance. Where is that fucking balance.  What do I do to restore that balance?  Can it be restored?  or even maintained?  I have no idea..a friend said to me you cant change the past but you still deserve better than you got but you have to keep picking that up.. the disease is punishment enough, count your blessings so you can have energy to enjoy your blessings. But what does that mean.  I cherish the blessings in my life but, I struggle to make it out of bed.  There isn’t a STD that will kill you if you treat it properly.. that is what is said.. what is not said is the level of pain that can accompanying that STD.  Not just HIV but, any of them.  What do you do with the blessing of pain?  How do you make that your friend instead of just your constant companion?  Fuck if I know.. but ask me about what it feels like and I can tell you in great detail.. who ever heard of bone pain.. what the hell is that even about? But it is there folks and it is wicked!  What it is to wake up scared that if you open you eyes or move something that the pain will be just sucky?  Well the case manager and his three days a month is not so bad.. thought plan is a rough one.. what I would give for three days a month to feel like crap, please sign me up.. but it doesn’t work that way does it.. nope it doesn’t it.  It is a moment by moment journey that is not known and at times it is just fucked up and worthless.. but as I sit here hearing the birds sing outside my window I guess I am still standing.. despite everyone’s best efforts..

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