not a solitary struggle but.. no others around here to be found yet…

20 months since I got that call.  So far no one I see has any other folks on their list of peeps.. the support groups for this state are still not there.. the concept of sending a person a gift card that can only be used 60 miles away has not dawned on anyone as being a dumb idea…I am very frustrated this day for two reasons.. one – I have pain.. not pain like oh if I ice it and elevate it will go away.. no like pain deep in my bones that is stabbing and I cannot move type of pain.. another side effect of the medication.. now I get scripts for pain pills by the 60s, take one twice a day and one every six hours for break through pain.  I opted to try acupuncture, amazingly there is one 30 miles to the west, that will take some time to set up..and a TENS machine but no one sells them in home health these I am trying to figure out where to get that on my insurance..I wake up in the morning and take the pain pill, the muscle relaxant and an anti-nausea pill and I lay there waiting until them kick in and try not to weep.  Number two reason.. the abnormal dreams.. that is what they call them.. abnormal.. last night I dreamed we were cleaning the basement and a cotton mouth snake came out of the basement and slide right over my leg to get outside. I woke up just as the snake was going over my foot and feel off my bed.. I didn’t know where I was and that is not usually.. waking up with dogs chasing me or with no idea where I am.. it is normal for the medication.. the suggestion I got from the staff at the health clinic was to watch porn before bed at least then the dreams would be about sex.. abnormal as that maybe.. well when one person cannot have sex with another without disclosure one does not want to watch porn.. one wants to be held by that special person who does not exist.. last Thursday I could not move, and was in bed the whole of the day mostly.. the pain was unbelievable.. that I pondered just being dead.. really thought about it.. blood running out of my forearm.. type being dead.. what kind of a parent am I that I can barely interact with my kids.. taking care of them.. parenting my children is the greatest thing ever for me.. and now it is the only thing I can do before having to take a nap, throw up or take more pain medicine….but at least it is parenting.. wished it paid seven thousand dollars a month but it doesn’t.. I am going to die.. the medical profession says that this is not a terminal disease any longer just chronic but it is not true.. the difference between the two isn’t that you can now live until something else kills you..  ..    this will kill me.. it will just take a little longer then it took in the 80’s & 90’s.. that is what that means.. and if the disease itself doesn’t do it, the medication I take to keep me alive will.  Just a fact..I am non detectable for viral load.. that means that there is very little change I could transmit this to another person.. my CD4 level is higher then it was when I got the phone call.. great.. the drugs do their thing.. so now that being dead is really not an option.. guess I need to find something that I can do to make money.. keep thinking about Job in the christian Bible.. I always thought it was  a short book like Ruth but apparently it is very long.. and the conversations and debates had by all over the mans condition I keep thinking why didn’t they stop talking and start assisting?  Why sit for seven days on the ash heap with your friend and never bring him anything to eat? or something to wash up with? or a place to sleep?  Why leave the person you knew was good.. and even if he wasn’t, people don’t know… why leave him in discomfort?  I am ill.. over a million people in America are in the same situation.. about thirty in my county alone.. but that doesn’t mean anything… am just sitting on this ash heap.. working on not dying.. it takes up a great deal of my time these days..hopefully it will continue taking up my time for several more years..that being said.. am I going to buy my urn sooner then later…the struggle is really real…


Thank you for sharing below.

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