This is only for those of you that give a damn. In an effort to write of things regarding the topic of Transverse Myelitis I thought some of you might find what I am going through to be somewhat interesting. If not, delete this email now, because that's what this is about. You are aware of the two pressure wounds that go deeply...all the way to the bones, on each side of my behind on the ischeal area, where we sit. Well, I have been up all night in pain...yes, I have a true pain in the ass! with a wound vac attached by lots and lots of tape to attach a suction device to each wound site. Both sites are infected, including the bone. That is the bad news, except for the fact that the machine that sucks the infection out of the wounds really and actually, sucks!
It has an alarm system built in and every couple of minutes it goes off with one warning after another. And it keeps alarming until I press the reset button. That is why I am awake at three in the morning. As of yet, there has not been a real problem except for the darn machine. Anyway, for a few months I have been hooked up at home with IV antibiotics, Vancomycin, which I found out yesterday is not working so today I started out on something else I hope will have the desired effect on the infection. This too is an IV medication but I take it in conjunction with Reglan because the IV meds makes me sick to my stomach which is one of the side affects of the IV stuff. Well, my apologies for being a bit testy regarding recent topics on the TM site. As far as those persons go who keep threatening to leave the site because they are unhappy with the topics and /or some person's opinions... simply quietly go to a different site. One day someone will write, "where is so and so? Haven't heard from them in a while" and we will come to the conclusion that you needed something we were unable to give and you went elsewhere. The World will not end and we will go about the business at hand, trying to help the new members and ourselves deal with the physical and psychological effects left after an attack of TM. The psychological effects are sometimes as bad, or worse than the physical. Being bed ridden is no fun. Missing out on family events at holiday and other times sucks a big one. Having family believe that we don't take part in dinners, etc because we are too lazy or simply don't care any more hurts almost as much or more than the Transverse Myelitis. Thank the Lord that we have this wonderful family to come to when the realities of life with a debilitating disease gets us down. It is great to have friends who truly understand how we feel. Having to travel by ambulance may sound like fun to some, but believe me, it isn't any picnic. Besides, if one is not being transported to a TM related appointment, it can get quite expensive at $180.00 round trip. And that is providing the destination is fairly close to home. Then when one arrives to wherever it is that they are going, if the wounds are like mine, one has to spend the whole time on the stretcher which is not like laying on a feather filled sofa. The persons on this site understand how much a visit like that takes out of us. I know how worn out I am after a round trip visit to the hospital ER or to my Dr.'s office. Spend a few weeks in bed, not moving your legs at all and see how much energy it takes out of you simply transferring out of bed and into your wheelchair. I haven't had the luxury of sitting in my wheelchair for almost two years now, and it is getting me down. So, life with TM is just like any other chronic illness; It is the pits. Just like getting older and finding things more difficult to do. I am finding myself falling asleep in mid-sentence and waking up hours later, so I guess it's time t0 get some shut eye. Love and Hugs, Jude **************A Good Credit Score is 700 or Above. See yours in just 2 easy steps! (http://pr.atwola.com/promoclk/100000075x1215855013x1201028747/aol?redir=http://www.freecreditreport.com/pm/default.aspx?sc=668072%26hmpgID=62%26bcd=De cemailfooterNO62)
