HI!

I am so glad I found your blog tonight as when I just came across your article about “dream Jobs” and how you might have to adjust your career such as you did with nursing, I was all of a sudden intrigued as I need help in this area. I have been a nurse for more than 20+ yrs – 10 of those just recently as a Pediatric Nurse Pracitioner. That was until 8 months ago when I fell on a wet floor the housekeeper was mopping and never put a warning sign on it. I feel while moving quickly to go to a delivery. I called my supervising physician as in CT you either have one or you don’t (mine was really great – I think), then my doctor asking what I should take for the pain as I didn’t want to take a pain med at work even though I have been on the same med for the past 5 years that, in a nut shell, gave me my life back as I was no longer in pain, could get out of bed, care for my kids, see their games, care for patients and be myself again after the diagnosis was made 15yrs ago. I am sure I had Lupus longer but blamed many of it’s symtoms on figure skating and practicing 4-5 hrs a day – the joint pain, the raynauds, generalized pain etc. The rashes I blamed on my underlying dx of angioedema, the shortness of breath due to my asthma, the muscle pain chronically in my chest that was only relieved by bending down on skating (I did pairs and was supporting myself in the air with the use of my arms/chest quite a bit, the exhaustion on being a mom, working full time and doing lifeflights/transports, I can go on and on. So because I fell, I was called into HR both my supervising physician and I thinking it was to check on me because of the fall. I did fill out an incident report and had witnesses of my behavior prior to the fall and that my focus on deliveries when babies needed resuscitation was impeccable. Never a complaint or safety issue. After my fall, my whole life circled arount the disease I said would never define me. And now I feel as if it does. During the weekend after the fall, my Dr directed my to take my pain pills along with steroids round the clock x3 days since I was home and on my own time (remember, I called my physician for his advice on what to take after the fall and I did exactly what he said which was increase tylenol to 3pills q4hrs just to get me through the 24hr shift that friday as I didn’t want to have someone come in to cover and ruin their weekend. When my supervisor and I sat in the office we were blown away to hear that “people have found me to be groggy at times – almost falling asleep standing up at times. That my walk seemed unsteady at times (I have avascular necrosis of the hips from steroids which they all knew) and worked 24hr shifts. This hospital hired me with my full disclosure on my own regarding lupus and my medications and they said no problem, you have so much experience and good qualities we want you. After 18mos of no complaints as i said, safety issues, being left in the hospital alone as a pediatric hospitalist to resuscitate babies at deliveries if needed, my supervisor and I were basically told to sign this “survey” of my sleepiness that had never come up for 18mos until I fell and my supervisor wouldn’t sign it as she never witnessed the behavior. They took me for a drug screen and the very medication I disclosed to them upon hire which I then took round the clock x3 days after I left my 24hr shift saturday morning per my drs direction, obviously showed in my urine as I told them it would but despite many a dr note re meds, my responsibility and lupus, they told me to go on STD, that b/c of the meds I needed I wasn’t safe at work and that my job would be there waiting once my lupus was better. I know they were trying to pin this on drugs but because I disclosed upon employment what I was taking and what I took per my doctor while I was working and when I went home. My supervisor said it was stupid politics and to just do what they say and I will be back in no time. I told them also, along with my dr, levels would be higher than usual because I was taking them RTC per his instruction. I was going through chemo and still am, got a certified letter in the mail, opened it up and it read “because we can no longer hold your job any longer, you will be terminated effective Feb 1st of this year. This is my life. I have been caring for much sicker children in Boston on a burn and trauma unit no less, ER’s, transport, life flight, picking up kids from all over the world to get them back to the states on medical lier jets, assissted for 72hrs straight helping victims of the Boston Marathon Bombing then I move to CT and Bam. My life is turned upside down. My husband has a good paying job, my job always paid well and we just put in a pool. Things were finally coming together. I now have no job, no prospects of a job, no disability and no unemployment. They then just blamed everything on the Lupus as trying to pin this on medications was getting much to hairy for them and we all knew the truth. This is tainting my reputation and hurting my family to the point my husband is gone 5 days a week now to work in the city to make more money, the kids miss him terribly and are now afraid they will loose the house they are finally becoming used to and a school where they are making friends instead of being bullied to the point they both had to be put in therapy – my oldest, 10, said he didn’t want to wake up in t he morning and some days thought of killing himself but promised me he never would. That’s how mean he was treated. My little one cried on the playground. Finally, finally they are settling in and we don’t have enough money and have emptied every bank account we have and have sold sentimental items to us. I am trying to keep it together not letting Lupus take over but now I have had white matter changes in the brain and I am being told the ICU isn’t in the cards for me anymore. It’s all i know so now what? I have an MPH and an MSN – yes, I could do research but I want both. I never had an issue in Boston. And who wouldn’t look tired waking up at 3am for a delivery when staying at the hospital all night. My friend made a go fund me page to help keep us afloat until the chemo is done, the medical bills stop piling up and I can find a job that suits everyone. I was wondering how blogging works as I know so much about growth and development of babies and children to cpr to crafts for kids to educational programs to what is approp things for age to age and so on. I also love interior design, especiall children’s and infant’s rooms where I really have a knack. However, I can’t have my children loose the house they just feel at home in because of what these incredibly mean people have done to me. I have to stay afloat with gofundme for now and then find work I love and do it mostly from home. First, might there be a way you can get my go fundme page out to your followerers? and second, might you help me figure out how to cope with this and get back on my feet? I know we can perservere through this horrible time and not loose everything we have. Please, can you help? I thank you in advance. Jill Peterson