Eleven years and two days ago, I went into pre-term labor. I woke up in the hospital on a med-surg floor in a pool of blood. Marty and I went nuts trying to figure out how to use a fetal heart monitor. I got to ride in by bed, flying down the hallways, to L&D. I got held there for two days while the steroids were given time to take effect. My baby was transverse (sideways) as much as I begged her to turn, she didn't. Needless to say this child is not getting a car when she is 16!
They took me in for a c-section at 8 am. Sadly that is all I remember. I woke up intubated in the MICU. Apparently, the extubated me after the c-section but I crashed in the elevator. They reintubated me with a pedi one!
Julia Marie was born at 26 weeks (that is 3 months premature) shortly after 8:30 in the morning. She was 1 lb 8 oz and 12 inches long. I am told she fit in the palm of her dad's hand. Thanks to Dr Minkin's unorthodox ways my Jujus made it into this world. Julia was a stubborn lil one. She pulled out her breathing tube her first day of life. Heck I even had one in still. They never put it back in and she flew and grew. I didnt get to see her in person until she was 3 weeks old. Dave had talked a NICU nurse to bring her to me. She had grown since her birth but she was still a lil bit of a thing. Julia did well and I got to bring her home at her due date, October 12th, 2001.
I am amazed that she had none of the problems that a preemie usually has. She was and is my miracle child. Today, she is 5 feet tall and is 110 lbs. She is crazy in that fun kid kind of way. She puts butter on her butt and howls at the moon. Julia always has to have the last word and still is stubborn as all get out. Sometimes she thinks she is a cat and others a puppy. She is the leader of our cats and they treat her like she is one of them. In so many ways she is my cub. She is the clone of her sister in looks but her own person in every way. She and Anna get along so well. She can't wait to be Aunt Midget. It was so cute that when she went to bed tonight she hugged her sister...and her pregnant belly..saying "Night, Tyler".
I love my Jujus and am forever grateful to be blessed with her, even if she does put butter on her butt. (rolls my eyes). She makes life fun. Happy Birthday! Julia.
Thursday, July 19, 2012
Wednesday, July 18, 2012
Knowledge and Fear
Sometimes, I wish I wasn't a nurse. Oh, don't get me wrong, I love patient care and am a nurse at heart. It's when it comes to me. I tend to scare myself to death. I am not always the bright and chipper person people see. Right now, it's late. I have a fever of 102.2 F. My left leg has the healing wound. Ok, that looks fine. It's above the wound area. My knee is swollen. Hurts like bloody hell, is reddened. And the redness is spreading. No, I won't go to the ER now. They tend to assume its the wound. No drainage, no s/sx of infection, nice granulation tissue. BUT given how the medical system is right now...(God help us all when HSR and YNHH merge). I am waiting until morning to see my doctor who is wonderful and knows me. I know its probably cellulitis (had cipro on hand and took some) but at the back of my mind is how the NF started 11 years ago and what the symptoms of a blood clot are. Rationally, I know that I have good pulses and color, there is no NF striping but I am still making myself nuts because of the pain, redness and fever. Yep, nurses make the worst patients, I admit that. But the Gods help me, its still only two weeks into July, and I am not certain who is worse, the hospitalists or the new residents! So I am asking you please to send healing vibes, and positive energy my way. Light a candle for Isis or Quan Yin or to the deity of your choice. I am a survivor but at this moment, I am just plain scared and need all the help I can get.
Bright Blessings!
Mon
Bright Blessings!
Mon
Tuesday, July 10, 2012
Rough Day
I don't consider myself a victim. But I feel like one today. Listening to people lie to your face tends to have that effect on you. Trying to shake it off and lose that feeling. I have no doubt in my mind that they lost an opportunity to have an awesome administrator, me. If you can't accept me for who I am, disability and all, then you are so not worth my time. I will however not back down to you and shout to the rafters that you have done wrong. That is not being a victim, that is teaching YOU a lesson about right and wrong, and how you should treat people.
I had to deal with the EEOC today. It was in a word, SCARY. I don't understand how someone who is involved with discrimination issues actually said that I shouldn't discuss my disability at work that it can be used against me by people. Umm, I am who I am and if you use my disability against me then its WRONG! Isn't that the point of the EEOC to identify wrong? I guess the lesson today is that if you are passing able bodied you should stay in your closet. No wonder its nearly impossible to enforce the ADA if this is who is supposed to be enforcing the law.
So there went 6 hours of my life that I will not get back and still nothing is resolved. Apparently, to go to mediation one does not have to be willing to negotiate. I was. Shame, they weren't. Litigation will cost you so much more in the end. I will prevail!
Tomorrow is another day! Forward!
I had to deal with the EEOC today. It was in a word, SCARY. I don't understand how someone who is involved with discrimination issues actually said that I shouldn't discuss my disability at work that it can be used against me by people. Umm, I am who I am and if you use my disability against me then its WRONG! Isn't that the point of the EEOC to identify wrong? I guess the lesson today is that if you are passing able bodied you should stay in your closet. No wonder its nearly impossible to enforce the ADA if this is who is supposed to be enforcing the law.
So there went 6 hours of my life that I will not get back and still nothing is resolved. Apparently, to go to mediation one does not have to be willing to negotiate. I was. Shame, they weren't. Litigation will cost you so much more in the end. I will prevail!
Tomorrow is another day! Forward!
Wednesday, July 4, 2012
Out of the closet....no not THAT closet
My whole life I have been passing able bodied. Thanks to the God and Goddess I don't have all the deficits that others born with Spina Bifida have. Oh, I am plenty different enough but not enough so that you would notice. That has always been to my advantage, as I was able to do things that everyone else did without anyone giving me a second glance. My disability was firmly locked in a closet.
I thought my eyes had been opened when I lost my right leg to necrotizing faccitis (NF) and while I waited for a prosthetic I spent nine months in a wheelchair. This world is not made for anyone in a wheelchair. Oh plenty of people talk the ADA speak but when you come right down to it barriers in this world remain. As soon as I got my prosthetic, I got out of that chair and was back to being me. Most people, including physical therapists, do not notice that my right leg from the knee down is titanium! Back to being passing able bodied, that disability closet door was opened just a titch. I went back to work, and worked my butt off. I was able to still see patients but preferred doing QA. (I know really sick, huh?)
Now, I find myself in a place I never thought I would be. If you don't have hand rails on your house, forget it I can't get in without my cane. Most patients really are not sympathetic when they are sick, so they are uncomfortable with an obviously disabled nurse. I was an administrator for a home care agency. I got the damn place it's license. Everything was as good as it could be with a meglomaniacal, overbearing boss. Basically, home care agencies if they are privately owned, are owned by nut cases. I unfortunately was dealing with a germaphobe nut job. When my Spina Bifida symptoms began to rear their ugly head, I found out what discrimination was really all about. I had some clue from my previous employer but since that is still in litigation I won't go there. My skin broke down and I had a venous stasis ulcer on my remaining leg. I ended up hospitalized and what did Mr. Wonderful Boss do? He said he wouldn't pay me my owed PTO unless I worked from the hospital. He then reneged on my telecommuting. Things went down hill from there. He interfered with doctor appointments and my care. I even saw an ad for my job. I kept doing my best. The man even said I was the hardest working person he ever saw. It was for nothing. I got sick at work and the idiot fired me after embarrassing me. Calling 911 for stomach sickness is a bit extreme. Discussing my bowel problems in front of my underlings was worse than being sick and not making it in time. I probably should have sued him....but at the time I was in no place mentally to do so. I guess I am out of the closet and pardon the pun, but shit out of luck when it comes to a job.
It's been a year now. My wound on my leg is healing slowly. I go on job interviews only to realize that I don't fit the corporate image of what is an administrator or QA nurse. I look disabled. I walk with a cane. Some days the wounds exhaust me, other days its better. So, here I am fully out of the closet, walking down the hall and out of the door....and I am choosing to go back on disability. I identify myself as a nurse. It's so damn hard for me to do this. I have been on enough interviews that have made it clear to me that in a position higher then Walmart greeter, the ADA doesn't means squat. One company, who takes federal money has an office, that is not accessible. That was the reason for not hiring me. Another company wouldn't give me a reasonable accommodation regarding the drug test...gee, I guess I could fake the test in an accessible bathroom rather than nearly falling on my ass trying to cath myself into a cup in a non-accessible one. One idiot actually told me that it would be different if I was in a wc. Oh excuse me, they said wc bound. No one I know of is welded to their damn chair! If the healthcare community is so openly prejudiced against a disabled one of their own, its no wonder no changes have been made elsewhere. Doctor's offices, hospitals are not always accessible. Come to think of it, in the area hospital I spent most of last year in, I did not see one disabled employee.
I surrender! I am damn good at what I do. I know I am a better nurse then some because of the care I have received in the past year. I know the federal, state, and accrediting body regs inside and out. Besides, I care about my patients. But, I am giving that all up. If you cannot see who I am beyond my disability then I don't want to work with you anyway. No, I am not bitter but rather exhausted. I am tired of proving myself to people who aren't worth it. I have spent my life trying to prove that I am as good as an able bodied person. To Hell with that philosophy!
No one really knows how those of us with SB will age. I am fortunate enough to be in a generation who is the first to grow up with SB. It's become clear to me that driving myself so hard is costing me my health. Retiring from active nursing now will probably add years to my life. It is doing wonders for my mental health, and my family life. I do have a plan, I am going to work on something. And I am going to make sure that in my little part of the world, the ADA is adhered to. For me one door opened wide, but others closed shut. Fuck it! I found a window into my future.
I thought my eyes had been opened when I lost my right leg to necrotizing faccitis (NF) and while I waited for a prosthetic I spent nine months in a wheelchair. This world is not made for anyone in a wheelchair. Oh plenty of people talk the ADA speak but when you come right down to it barriers in this world remain. As soon as I got my prosthetic, I got out of that chair and was back to being me. Most people, including physical therapists, do not notice that my right leg from the knee down is titanium! Back to being passing able bodied, that disability closet door was opened just a titch. I went back to work, and worked my butt off. I was able to still see patients but preferred doing QA. (I know really sick, huh?)
Now, I find myself in a place I never thought I would be. If you don't have hand rails on your house, forget it I can't get in without my cane. Most patients really are not sympathetic when they are sick, so they are uncomfortable with an obviously disabled nurse. I was an administrator for a home care agency. I got the damn place it's license. Everything was as good as it could be with a meglomaniacal, overbearing boss. Basically, home care agencies if they are privately owned, are owned by nut cases. I unfortunately was dealing with a germaphobe nut job. When my Spina Bifida symptoms began to rear their ugly head, I found out what discrimination was really all about. I had some clue from my previous employer but since that is still in litigation I won't go there. My skin broke down and I had a venous stasis ulcer on my remaining leg. I ended up hospitalized and what did Mr. Wonderful Boss do? He said he wouldn't pay me my owed PTO unless I worked from the hospital. He then reneged on my telecommuting. Things went down hill from there. He interfered with doctor appointments and my care. I even saw an ad for my job. I kept doing my best. The man even said I was the hardest working person he ever saw. It was for nothing. I got sick at work and the idiot fired me after embarrassing me. Calling 911 for stomach sickness is a bit extreme. Discussing my bowel problems in front of my underlings was worse than being sick and not making it in time. I probably should have sued him....but at the time I was in no place mentally to do so. I guess I am out of the closet and pardon the pun, but shit out of luck when it comes to a job.
It's been a year now. My wound on my leg is healing slowly. I go on job interviews only to realize that I don't fit the corporate image of what is an administrator or QA nurse. I look disabled. I walk with a cane. Some days the wounds exhaust me, other days its better. So, here I am fully out of the closet, walking down the hall and out of the door....and I am choosing to go back on disability. I identify myself as a nurse. It's so damn hard for me to do this. I have been on enough interviews that have made it clear to me that in a position higher then Walmart greeter, the ADA doesn't means squat. One company, who takes federal money has an office, that is not accessible. That was the reason for not hiring me. Another company wouldn't give me a reasonable accommodation regarding the drug test...gee, I guess I could fake the test in an accessible bathroom rather than nearly falling on my ass trying to cath myself into a cup in a non-accessible one. One idiot actually told me that it would be different if I was in a wc. Oh excuse me, they said wc bound. No one I know of is welded to their damn chair! If the healthcare community is so openly prejudiced against a disabled one of their own, its no wonder no changes have been made elsewhere. Doctor's offices, hospitals are not always accessible. Come to think of it, in the area hospital I spent most of last year in, I did not see one disabled employee.
I surrender! I am damn good at what I do. I know I am a better nurse then some because of the care I have received in the past year. I know the federal, state, and accrediting body regs inside and out. Besides, I care about my patients. But, I am giving that all up. If you cannot see who I am beyond my disability then I don't want to work with you anyway. No, I am not bitter but rather exhausted. I am tired of proving myself to people who aren't worth it. I have spent my life trying to prove that I am as good as an able bodied person. To Hell with that philosophy!
No one really knows how those of us with SB will age. I am fortunate enough to be in a generation who is the first to grow up with SB. It's become clear to me that driving myself so hard is costing me my health. Retiring from active nursing now will probably add years to my life. It is doing wonders for my mental health, and my family life. I do have a plan, I am going to work on something. And I am going to make sure that in my little part of the world, the ADA is adhered to. For me one door opened wide, but others closed shut. Fuck it! I found a window into my future.
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