The "book thing"...
Some of you have been trying to give me a reason to live...to keep going. "Hey, Ron...YOU should write Julie's book!" Uh, thanks...but, no thanks. I am NOT a writer...that's my sister-in-law Rachel. Oh, yeah...if you need a nasty letter to the Superintendent or the Board of Education...can dash one of them off in my sleep...if I ever slept. But...write a book? Wouldn't know where to begin.
However, if you want a taste of what it would have been like...here is a sample...written by none other than Julie A. Newell. Friend Kathy will recognize and remember this outburst, dashed off after returning home from one of her many hospital experiences.
Hey, Honey Bun:
How are you?
I've spent another stay in Southern Illinois Memorial Hells-pital , er, should I say Hospital? I was supposed to go up to Springfield last weekend, but of course last Friday I got up feeling sickly, and when I checked my temp, it was 103.9! Well, what else, but Ronnie had to have a fit because I was running a fever!!!! So what, I said; I'm always having some problem or other! Well, he couldn't handle it, so he just kept pacing and rubbing his forehead (a new signal which is designed to drive me crazy because he's so worried about me!!), until I couldn't take it anymore, and I jumped out of bed and said, "well, shit, just take me to Carbondale!"
What the hell was I thinking????
I wanted to take a shower, because I felt like hell, and I know I didn't want them poking around on me unless I was cool and collected. Well, he didn't think that was a good idea, but you know me--Ms. Stubborn! When I tried to get into the shower, my body decided that I didn't need a shower after all. I just didn't have the strength. So I somewhat ungraciously agreed to forego the shower, but I wanted my wedding rings (I take them off at night now because my hands swell so much). Couldn't find them, of course!!!!! The longer I looked, the more hysterical he became because "this is a matter of life and death", as if I didn't know! I WASN'T LEAVING WITHOUT MY WEDDING RING!!!!! Finally had to give up on that idea, too. So you know I was thoroughly fed up by the time I got outside to the car, and Ronnie was nerve frazzled! Never did find the rings until I got home from the hospital. I guess the Monster Who Lives In The Closet decided he'd played with them long enough, and gave them back!!!
Any who, I decided on the way to the hospital that I was probably sick because I started going to the Pain Management Clinic in Paducah the week before, and they had taken me off almost all of my pain meds, including the vicadin, the duragesic patches, the ultram, skelaxin, etc., etc., etc.,! They put me on methadone, but believe you me, it does not handle the pain like the other meds did. By the end of this month, I am supposed to begin injection therapy on my screwed up hip and my knee on the same side. Won't that just be a little slice of heaven???!!!! I can hardly wait.
When we got to the emergency room, that's when my heartaches began, as the old song says! The emergency room nurse, a young Hispanic behemoth named Marlon (that should have told me something right there!) decided that he knew better than I did, or better than the emergency room nurses who know me by heart now, and who ran up to hold my hand and exclaim about the beauty of my grooming (my 'beautiful nails' and my 'classy feet'). The nurses told him that I had bad veins which would collapse after a day or so, and I needed to use my port for IV meds. He decided that he could find a vein that would work, no matter what I said. He quickly accessed a vein between my elbow and wrist on the right side. It worked, but I had told him it would work at first. It was only after the first few hours that it would collapse and would require another stick to find another vein that would then collapse in turn. . . . over and over and over . . . . He was so proud of his handiwork; I could have jumped off the table and slapped his round face!!!!!!!! I was just too weak from fever.
After 8 hours in the emergency room (not exactly ER the Movie, right), I was admitted to Observation. Ronnie brought me in at 10:30 A.M. and finally got to go home at 11 P.M. The nurses left the lower IV intact but used the port to give me the new meds of antibiotics and pain meds, along with other meds like potassium, magnesium, etc. On Monday, the doctor ordered a CAT scan with dye to check for problems in my esophageal tract or around the heart. The technicians in the CAT scan room decided to use the lower IV. Guess what?????????? The vein had collapsed just as I had told them it would, and I felt this horrible pain in my right arm. They began to yell, "Stop it, stop it, we've got a problem!" They clapped a hand over my arm, so I at first couldn't see what they were concerned about--I just knew it hurt like heck!
They ran for warm cloths, and a nurse, and almost got hysterical. When they finally let me see my arm, it looked like a baseball was under the skin: the dye was being held in a swelling the size of a baseball protruding from my skin! It was so gross, and so painful, and so obscene looking! They kept saying, "Oh my god, oh my god, oh my god". What do we do now?" They finally decided to get another nurse to come down, to put a new IV in the LEFT arm, and insert the dye through THAT IV so that the test could get done, and then send me back to the room. Clearly I had no idea what the heck was going on, and when they concluded the test, one of the nurses tried to get me to sign a release, absolving them of any blame in the case of any further complications from the dye in the collapsed vein on my right arm. I refused to sign, and would you believe, she began to yell at me, telling me that I "HAD to sign" the form. I refused again, and she continued to be belligerent. She kept saying I HAD to, and I kept asking her WHY I had to. I told her that the form appeared to be instructions for me to follow when I got home, and that since I was a patient in the hospital, if they had instructions for the care of this vein, the instructions should have been given to my nurse or my doctor, instead of me. She finally told me that she would "just have to put down that the patient refused to sign it". I told her that that would be fine with me because I WAS refusing to sign it. She threw the clipboard onto the CAT scan bed and flounced out. One of the technicians said, "It's not that big a deal". I said, "apparently it was to her!" I called Ron and had him bring a camera to the hospital with him because I wanted a souvenir of the "Vein That Wouldn't Die'"
But that wasn't the end of that day; oh, no!!!!! I quickly got a new roommate (a sweet-looking, white-haired gramma who told the doctors that she believed her problem was that she had a "large ball of impacted feces" and that she "didn't give a shit about it". As the night wore on, she turned her attention to me, and began to complain to the nurses that I was "yak, yak, yak" all night long!!! There was only she and I in the room, so I don't know who was yakking, but apparently she thought it was me. She called the nurse to find out when lights had to be out because I was "keeping the lights on all night", and she couldn't sleep. The nurse told her that she was in the hospital to get well, but that she needed to go home to get some sleep! She finally convinced another nurse to come to my side of the curtain and begin turning off my reading lights and my TV sound, without even asking me about it! Well, I threw a fit and told her I was paying for half that room and didn't appreciate her not respecting me enough to ask me to accommodate the old biddy, er, lady! When the nurse got hostile to me about my lights, I demanded to see the supervisor. That nurse got moved away from me, and they asked me if I wanted to move to another room (with no roommate), so I agreed. They told me after I moved, my sweet little roommie told them that if they brought another roommate into her room, the person "had better be in a coma"! What a night!
If I didn't laugh, I'd probably be dead right about now!
Take care, and Love ya,
Wasn't looking for that "chapter"...just ran across it by accident while looking for "important papers". If I run across any more entries, I will pass them along.
Found another e-mail - from May 19, 2001 - that gives her first-hand description of "a year in the life" of Julie A. Newell. It's a shame that she didn't have more energy...could have done so many more things! :-)
Now I know why I was so tired all of the time..."Driving Miss Julie!"
Hello Family and Friends!
It's nice to hear from you now and again--we all seem to be on the run ALL THE TIME! Ron and I are hanging in there--although he says I have made his hair turn gray in the last month or two. I've had to go to the hospital for a day or so because of chest pains, and then had to leave the hospital in a huff because of a weird nurse who thought I was faking pain to get vicadin and oxycontin (the two latest abused prescription drugs).
You remember I fell while on a seminar in Florida in February? Well, after my cuts and scrapes and sprained ankle stopped hurting, my shoulder continued to hurt. My gp suggested physical therapy since an MRI showed "severe bone contusion" from the fall.
Well, after two months of therapy, I still have pain--pain so severe that I am sometimes crying in pain (despite the medications for pain I take for lupus)! So, another MRI. Well, this time, the test showed a torn rotator cuff! They say the swelling was so severe at the time of the first test that it masked the damage to the rotator cuff! What next, right?
I was just elected to the Board of Directors for the Illinois Education Association! And to the state ESP (Educational Support Personnel) Council. What an honor! There are only about 65 members who represent the entire state.
What a difference a year makes! I am now on the state pension fund board (first minority and only woman), the Board of Directors of the Illinois Education Association, the Head Start Policy Council for the lower seven counties of Illinois, The Justice Department Juvenile Justice Committee, The NEA Paraeducator Task Force, recently featured in the NEA Today Magazine for May, and will soon appear in an edition of Arthritis Today Magazine in an article called "Living With Lupus"! Most of this happened within the last year! Whew!
Yes, I am a little busy, but you know what? I'm loving it! I just keep telling myself that I have to get in shape for Christmas in San Diego! I'm gonna run up those steps by December! Just you wait!
And, my friends, don't worry about reaching 40. I turned 50 last year, and it has been the best year of my life! I truly believe that they got it wrong--life begins at 50 these days! You take care of yourself, and write when you get a chance--I love hearing from you!
We promise not to kick you out of the family if you don't write every week (we're hardly home, anyway!) In the next month, I have a trip to Chicago, a trip to Boston for IMRF, a trip to Oak Brook for Pension Board Meeting, another trip to Chicago to do a presentation for Operation Push and Jesse, a 2-week trip to Los Angeles for the NEA National Conference, a trip to Springfield, Illinois for IEA computer training (they provide a new laptop or pc for all Board members!), a trip to Carbondale for chemo and another to a pain management clinic in Paducah, Kentucky for injections for neck and back pain--not to mention a new referral with an orthopedic surgeon to see what he says about the rotator cuff tear, and a referral to a cardiologist for a stress test on my heart! My God! What am I doing??????????
Julie (and Ron)