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Sunday, April 22, 2012

Rehab, it's not just for quitters

                 Ok, back to my journey with CIDP. I spent 3 horrifying weeks in hospital “B” and from there they sent me to rehab at Tampa General Hospital. I could not stand, let alone walk. I could just barley roll over in bed and couldn’t raise my arms high enough to feed myself when I got to rehab, but they said I’d be walking by the time I left so I was optimistic…what a letdown that was. Not because they did anything wrong, per say, but things could have been handled differently.

                By then end of week 1 I was sitting up and dressing and feeding myself. I was exhausted afterwards and needed to take another nap but that’s normal, or so I’m told. I had an hour of occupational therapy (OT) first then an hour of physical therapy (PT) then lunch then more PT then the rest of the day was “free time”. I was visited by the psychology department and they have a “recreational therapy team” that also visits patients and tries to get them to hang out with other patients and “have fun”. What they really needed was someone to sit and talk to the patients, not analyze them, not try to make them outgoing when they just aren’t that kind of person to begin with, someone who the patient can feel comfortable talking to that’s not a friend or family member.
                As you know from previous posts I love my family and friends dearly, but I really needed someone to talk to that wouldn’t document everything I said and would just let me vent. When your life is turned upside down and you are completely dependent on strangers, or even on someone you know, it’s scary, frustrating and depressing and so many other words I can’t even begin to say and you need someone that doesn’t say “you’re depressed, take this pill” I told them I wasn’t depressed I was MAD. I was mad at God and decided he hated me, why else would all this happen? I just couldn’t fathom why else this had happened to me. I was a good kid, ok I was 30 but still, I was working full time, paying my bills, not cheating on my taxes, not doing drugs. Ok I wasn’t going to church either but I’ve always believed that God is everywhere not just in church. I can still be Christian without attending mass. But anyway, that’s a whole other issue and a hot button for nearly everyone so I won’t go on about my personal beliefs.

                By week 2 they were having me roll myself down to therapy then do both OT & PT then roll myself back up to my room for lunch then roll back for afternoon session then roll back to my room for dinner. HELLO! What’s my diagnosis? GBS (at the time they still said GBS not CIDP) What is one of the major symptoms? FATIGUE! The idiots, by the time I rolled myself the 200 feet to the elevator to go down to therapy I was exhausted. I had fed myself, brushed my long hair and pulled it into a ponytail, brushed my teeth, gotten dressed then roll a wheelchair 200 feet to the elevator then I needed to roll another 150 feet to therapy then do therapy. What the hell were they thinking? Finally I convinced them that it was too much on me and they had someone come get me and take me back so that I wasn’t too tired out.
                During week 2 the psychologist threatened to have me committed, because I told him to…well, nicely to piss off. He decided that all my problems were my dad’s fault and he filed a report saying that he would not release me to go home with my dad because I wouldn’t be safe! I don’t know how he came to that conclusion. I know one day when he stopped to see me I was upset. He asked why and I said because I was disappointing my dad, I knew I wasn’t, I was sick and dad loves me no matter what. I was disappointing myself really but apparently dads are a hot button for that doctor. My brother told me he was obviously an idiot because people are only psychologist because they couldn’t be a psychiatrist, that a psychologist is a glorified guidance counselor, he had a point.

                 So after the stress of that I began another relapse and started to get weaker again. By week 3 I had to receive IVIG again and by the end of it I was feeling a little better and the social worker said I had to go to a nursing home because I wasn’t getting any better. Again, I freaked out. In my mind nursing homes is where you send someone to die. My grandmother had died the year earlier in a nursing home and she went there to die because no one could take care of her. I felt like that wretched woman (social worker) and the psychologist were sending me off to die. I was 30 years old! I had just begun to live, now someone was sending me away to die! I cried and cried and mom just held me and rocked me like she did when I was a little girl. She told me everything was going to be ok and they would take care of me and they would not let me die. The next day they brought me home…wheelchair and all.
                So, this memory is making me cry, again, so I’m off to blow my nose and wash my face. Just know that I have gotten SO MUCH BETTER and I no longer think God hates me. Till next time, keep believing in the magic of life. 

                On a side note, about a month later someone form an “independent survey company” called to do a survey on my stay in rehab. Oh boy did I have fun! I told them the nursing staff was awesome and specifically named two of the nurses that had helped me beyond what I thought their job description called for. But I also let them know exactly what I thought of the psychologist and what he had pulled. The girl doing the survey was horrified and I found out that that psychologist was fired about two weeks after the survey had been done. I HOPE that I had something to do with that!
                I saw one of my nurses about two months later and she said that several people had complained in a survey about that “Dr” and he was gone. I told her what went on with me and she said she had heard he had his own “daddy issues” that they hadn’t spoken in 20 years. So maybe all those years in college didn’t teach him how to deal with his own issues and they were his down fall.

                See, I told ya, life is magical J



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