PAIN!!!!!
The pain is sooooo bad!!!!! I talked to my doc a yesterday & both of us think it is nerve pain. The disks at L3&4 are 90% gone & what is left is prolapsed (from a MRI 2 yrs ago) we think the nerves are being pinched that in turn causing the pain. My thighs feel like they are on fire & it feels like a spike is going into my lower back. I am not sleeping I am in sooooo much pain. I can not take the drugs for nerve pain they make me CRAZY. They have me on a low dose of an antidepressant I do not know if it is working at all. He started me on another drug to help (we hope). When I was at home I had 30 doses of breakthrough pain meds for 60 days. That I had to fight for. Here at the hospital they are so different. They switched my long acting pain med. The old one I was on for 15 yrs my doc said I could have gotten used to it. He put me on a stronger one. When I was first here I kept asking to get out of bed first thing in the morning I had to get up b/c of the amount of pain I was in. My nurse left a note for my doc & in the morning he came to see me. Now I can get breakthroughs every 2 hrs. They really try to keep the pain under control. It is just very hard to treat nerve pain. If I am having a very bad day I can choose sedation to sleep through the pain. I do not like doing that.
I had another training session tonight for the crisis line. There is another woman there who is in a wheelchair. We were talking about the way people react when they see the chair. It can be very good or very bad. Both of us think the same way. If someone says or does something neg we think it is their problem. We do not think less of ourselves for being in a chair we look at it as a tool. It is great to be part of an organization that does not "see" the chair. To be valued for what we can "do" & not see the limitations. It feels GREAT to contribute & help people.
The hospital that I am in is old. The newest part was built in the 70's. Some of it is 150 yr old. A beautiful limestone building. Anyway they are going to build a new hospital. To me they are doing it right. They are asking all departments what they would like to see in the new building. They ask housekeeping what would make it easier for you to do your job. They ask nursing having what in the rooms would make your job easier. How should it be laid out. They asked physio how they would like their room & so on. Then they asked patients what would you like in your rooms. They are talking about parking, laundry, bathrooms & so on. Anyway I was asked to be on the building board (patient side). I do complain about some of the care here (& rightly so) but it is a few bad apples. Most go out of their way to make life easier. I think that is why I want to try to work things out with the people I am having problems with. For the most part it is good here.
I had another training session tonight for the crisis line. There is another woman there who is in a wheelchair. We were talking about the way people react when they see the chair. It can be very good or very bad. Both of us think the same way. If someone says or does something neg we think it is their problem. We do not think less of ourselves for being in a chair we look at it as a tool. It is great to be part of an organization that does not "see" the chair. To be valued for what we can "do" & not see the limitations. It feels GREAT to contribute & help people.
The hospital that I am in is old. The newest part was built in the 70's. Some of it is 150 yr old. A beautiful limestone building. Anyway they are going to build a new hospital. To me they are doing it right. They are asking all departments what they would like to see in the new building. They ask housekeeping what would make it easier for you to do your job. They ask nursing having what in the rooms would make your job easier. How should it be laid out. They asked physio how they would like their room & so on. Then they asked patients what would you like in your rooms. They are talking about parking, laundry, bathrooms & so on. Anyway I was asked to be on the building board (patient side). I do complain about some of the care here (& rightly so) but it is a few bad apples. Most go out of their way to make life easier. I think that is why I want to try to work things out with the people I am having problems with. For the most part it is good here.
Replies
First of all, please see if you can change the font of your type to a larger font. I can hardly read your journal the font is so small.
I\'m so sorry you\'re dealing with nerve pain. Especially since you can\'t take any of the medications to help ease that pain. I take Lyrica and it helps tremendously. I don\'t blame you for not wanting to be sedated for help you deal with the tough times.
Glad the training is going so well for you with the crisis hotline. Also, being on the hospital board sounds exciting. You\'re doing very well with these extra-circular activities.
Hang in there girl. I hope these extra activities can help you deal with the pain and suffering you are enduring. I wish there was a magic bullet for what ails you - I would order it up for you pronto! I\'ll be thinking of you.
It\'s nice you have a \"buddy\" in a chair for your training who has the same outlook as you and I know you will be a great asset in speaking up for the patients by letting the building committee know what would make their lives easier. You do so much for so many there and here.
Gentle hugs and joined at the heart, Linda