and so it goes…

I am frustrated today, all weekend has been a bit of a struggle.  I felt pretty good on Saturday so I too my kids to buy shoes and we went food shopping.  So Sunday I woke up and was unable to move, fatigue so deep that just going back to bed was a struggle.  I don’t like this struggle much at all.  I used to be extremely good at completing whatever task was put before me but with this disease the simplest tasks can look like mountains.  Spent several hours looking at this issue from perhaps another view.  If one is to redevelop ones’ live how would that look or happen.  In my case does that mean leaving my profession?  As a nurse it is difficult to say  yes or no.  I would say yes if it involved direct patient care in this rural small minded state.  Not that in general people are small minded but they are scared the main reason for the stigma of HIV. It would not matter how often I educated that unless you slept with me or I openly bleed onto a bleeding person would the likelihood of transmitting the virus be a factor, that small to nill chance would still cause discrimination no matter if it is legal or not.  Person one on one care would be different.  Phone triage would be a good spot for me as well.  All these options depend on finding a medication routine that I tolerate which has not happened as of yet, and if I am correct cannot even be an option until I am on this drug for six months to a year with good labs.  The drug that just got approved by the FDA is not currently approved by the DHHD for use so I do not even have access to the medication yet that might return me to being a productive member of society again. So for now I would need to find a different career option and obtain the training to make it so.  So to recap I am waiting on my disability appeal, have had to file bankruptcy due to these circumstances, have no incoming income, and would need vocational rehabilitation to attain a new career that when in about eight months if the new medication works without side effects that I would be able to do.  Reasonable to think that I would be frustrated.  Been listening to Jim Croce for the last day and half. Steadily depressing low down mind messing working at the carwash blues.  Arlo Guthrie once said that folk song singer would debate themselves to death over what was and was not a folk song.  It seems to be most all songs are folks songs.. songs about the human condition, changing the suffering in the streets and in the homes, being free – if you’re going my way, I’d go with you.  So I have to say I love you, in a song.  I have been informed that all the people who have the virus in this state are “under ground”.  How sadly depressing and frustrating is that?  For a group of people who are so marked with a giant plus sign instead of an “A” to be so terrified that we all hide.  There is no more life, no chance of love or understanding.  If I informed you of how long it has been since someone hugged me would you be surprise?  Suicide is not always wrong..but it is not always timely.  I am a whirlwind of frustration, anger, terror, shame, such depression that I feel like Ms. Platt and would be twins, I want my life back, I miss the years with my children when I should have been able to take them to the park and keep up with them.  I am lonesome for someone to adore and appreciate me.  And that is all I have to say about that…..


Thank you for sharing below.

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