Friday, March 22, 2019

Midnight Freight Train of Pain

It is again 2am and I am alone (Patrick sleeping) in this world of blinding pain. I am recuperating from pneumonia and then get an acute colon infection which is making that pain train rush in on me faster than I can cope with. This has been one of the longest 24 hours of my life ... going from moment to moment, minute to minute and then making it one hour at a time. This is what will happen now without the IVIG (Octagam) - I will go from one infection to another until one actually kills me. But the fight for Octogam can only continue next week when the physician has to complete lots of forms for approval from government for us to import the medication ... once we have that authority, we have to have a clinical evaluation of why I can't have Polygam, a motivational letter for the Octagam and a new script sent to Discovery. They will then decide if they are going to pay or not. It is going to be a tough one, but one step in front of the other.
When I am in an acute infection stage, I need my pain meds more often and I know my body and how much is too much - and what can be used in safe dosages. Here comes the problem - Patrick does not understand that and has a go at me every single time I bring the pain meds closer together .... always because he is afraid I will become addicted. So what?? I am dependent on it and I am not on pain meds for recreation use - why can't I have more pain free hours so that my life has a little more quality. I am left here in extreme pain because of his attitude and what he said to me this evening. I have taken a less powerful pain shot to satisfy him when in fact, I should have just said - fuck you and taken the pain meds that I have for just such an event as what I am experiencing right now. He does not understand that I am chronically ill but that I get acute infections which needs more medication and pain relief. I am spending a lot of time on the loo - just shitting blood. Please God, help me get through the night.

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