Finally off bed rest!!!

July 14, 2008 at 5:08 am

I am finally off bed rest as I had skin breakdown and had to go on mandatory bed rest. It sure sucks when you have to be in bed when you really are not feeling sick as time drags on and on. I keep getting this stupid skin break down I only started getting this since I have been hospitalied this time no other times has this occured. It is annoying the doctor wants me to have a indwelling catheter in but it just kills me having it in as I bypass the stupid thing all the time no matter the sie and then to top it all off I keep getting infections from them and it gets to the point it is so unbearable I demand they take it out. He wants it back in but I told them no more for right now let my body heal as it is so inflammed down there I can’t possibly bear to have it in anymore. I know he wants it in so to reduce skin breakdown but it really does no good to me as it hurts way to much to have it in at this moment. I am to the point of telling them to just take my bladder out and give me a bag as I have had bladder problems all my life. I am just getting worse in that end of things and because I get a continual muscle spasm all along the muscles around my bladder that causes me to bypass any indwelling catheter that is in me. I have come to the end of my rope in dealing with this problem and don’t want to deal with it anymore. The doctor has taken me off of the Flexoral which I was unimpressed with all because he did not want me becoming dependant on them.

I swear what out there to deal with the issues any of us deal with after GBS don’t require this that are even slightly addictive whether they are for pain or for muscle spasms. I can’t get a referral to the pain clinic because all he tinks is that they do is prescribe narcotics. I am going nowhere fast it is very annoying. I want out of this hospital because I know if I get out of here my level of care will improve surprisingly that is the truth unfortunatly. The nurses don’t have the slightest clue how to take care of me. They swithed me units to a nephrology unit because they also take on some neurology patients and when it is crowded they tend to move patients over there. Yet they have no clue how to care for someone who is parallysed let alone have the devises to take care of me in this condition. They don’t have a bath that you can b lowered into while on a stretcher type thing, or a actual shower on the unit that is wheelchair accesible and to have a shower they have to take you to a whole nother unit. They keep expecting me to do things that are impossible for me to do even on my good days. This unit either should say no to any parallysed patients or get the right equipment.

I am still fighting with OT to get even boots to kep my feet in allignment in bed. They had the oddasity to say I don’t have foot drop even though it quite evedent I have foot drop, they won’t even fill out paper work for Easter Seals so I can get a scooter as they don’t fel comfortable doing so and wanted to say that the scooter would b more for social stuff then quality of life. I almost choked on that one. I so much want to fire both my OT and PT because they are undermining me at every turn but unfortunatly this is harder to do then switching doctors.

Hope veryone else is doing well.