I'VE NEVER KEPT A DIARY BEFORE SO WE'LL SEE HOW THIS GOES. I'VE DECIDED TO GO BACK TO SCHOOL AND FINISH MY PRE-REQS FOR MEDICAL SCHOOL. IT ASTOUNDS ME LOOKING BACK HOW I MANAGED TO GET A BACHELORS OF SCIENCE WITH NO CHEMISTRY, NO PHYSICS AND NO BIOLOGY. I NEVER THOUGHT I'D GO TO MED SCHOOL BECAUSE I GET GROSSED OUT PRETTY EASILY BUT SINCE I'VE HAD CROHN'S MY THRESHOLD OF GROSS-OUT HAS MARKEDLY INCREASED. THE THRESHOLD FOR PHYSICAL PAIN, HAS INCREASED IN DIRECT PROPORTION TO MY DECREASED NEED FOR PERFECTION. THIS HASN'T HAPPENED WITHOUT A LOT OF THOUGHT AND THE VERY DOCTORS IN MY LIFE WHO'VE TRIED TO TALK ME OUT OF IT ARE RESPONSIBLE FOR PIQUING INTEREST AND DESIRES IN ME I DIDN'T KNOW EXSISTED. MY DH HAS HAD RESERVATIONS ABOUT ME GOING BACK TO SCHOOL. I PROMISED I WOULDN'T GO BACK FULL-TIME (DON'T NEED TO) AND SCHOOL IS FUN FOR ME. I'VE LAID IN BED NEARLY TWO YEARS WAITING FOR LIFE TO HAPPEN AROUND ME AND THERE IS ONLY SO MUCH REALITY TV YOU CAN WATCH AND FAYE KELLERMAN BOOKS YOU CAN READ BEFORE YOUR MIND STARTS TO THIRST FOR SOMETHING MORE.

IT STARTED ONE NIGHT WHEN I TOOK AN ONLINE IQ TEST. I KNOW IT SOUNDS DORKY BUT I DO ONE EVERY OTHER YEAR AROUND MY BIRTHDAY TO MAKE SURE I'M NOT SLIPPING. IT WAS THE SAME AS IT WAS AT 16, 18, 20, 22, 24, AND 26 SO AT 28 I WAS STILL HOLDING STRONG. THEN OUT OF CURIOUSITY I GOOGLED "AVERAGE IQ OF MD" AND FOUND OUT I WAS 25 POINTS HIGHER THAN THE AVERAGE MD. HMMMMM-WONDER WHAT THAT TEST WAS TO GET INTO MED SCHOOL? FOUND A PRACTICE MCAT AND SCORED A THIRTY SOMETHING. I WON'T REVEAL IT BECAUSE I WAS HORRIBLY EMBARRASED BY THE PHYSICAL SCIENCES RESULT. I COULD DO THIS IF I WANTED AND THE NEXT QUESTION WAS DID I WANT TO?

THIS HAS BEEN A STRUGGLE FOR ME BECAUSE I HAVE BEEN FRUSTRATED AND BORED PROFESSIONALLY. I WORK IN A RADIOLOGY PRACTICE DOING CASE MANAGEMENT OR PRECERTIFICATION FOR PATIENTS' TESTS. THIS BOREDOM HAS MANIFESTED ITSELF WHEN I HAVE OFTEN BEEN SOMEWHAT IMPATIENT WITH VARIOUS MEDICAL DIRECTORS AT CERTAIN HMO'S THAT SHALL REMAIN NAMELESS. I KNEW THAT I WANTED TO DO SOMETHING MORE AND MEDICINE WAS THE FIELD. NURSING SCHOOL? MAYBE NOT BECAUSE I HAD THE FEELING THAT WITHIN YEARS I'D STILL HAVE THE URGE AND DESIRE TO BE ONE WRITING AND GIVING THE ORDERS. MY WORK ALSO FRUSTRATED ME BECAUSE I WOULD TALK TO A PT GET THEIR CASE PRECERTIFIED AND SCHEDULED AND THEN WOULD THINK OF THEM DAYS LATER AND WANT TO KNOW WHAT THEIR RESULTS WERE, WHAT TREATMENT DID THEY DECIDE TO DO, HOW WERE THEY FEELING ETC. BUT IT WAS BEYOND THE SCOPE OF MY RESPONSIBILITY AND INAPPROPRIATE TO CALL AND FOLLOW-UP. I REALIZED THAT AS THEIR DOCTOR I WOULD HAVE THE PRIVILEGE OF BEING INVOLVED IN ALL THAT.

MY DH UNDERSTOOD ALL THIS WHEN I EXPLAINED IT TO HIM AND HE EVEN OFFERED TO TAKE PHYSICS WITH ME THIS SUMMER. HE CANNOT SHAKE THE IMAGES OF THE COUNTLESS TRIPS TO THE ER FOR REHYDRATION (I WAS ON A FIRST NAME BASIS WITH THE NURSES AND ONE PARTICULARLY SWEET RESIDENT THIS LAST SUMMER), THE ELEVATED BUN AND CR RESULTS, THE TEARS OF BEING MOVED TO ICU WHEN I WENT SEPTIC, THE FAILED OSTOMY REVISION WHICH RESULTED IN AN INFECTION THAT ATE AWAY A GOOD PORTION OF THE SKIN ON MY ABD., ALL THE NIGHTS SITTING UP WITH A 32CUP TUPPERWARE THATSA-BOWEL VOMITING AS I ADJUSTED TO MY METHOTREXATE. HE WAS SCARED AND IF I STAYED IN BED FOR THE REST OF MY LIFE AND NEVER GOT SICK AGAIN HE WOULD BE HAPPY, BUT EVEN HE SAW THE DEPRESSION START TO CREEP IN. THE METHOTREXATE KICKED IN AND WORKED WONDERS AND I STARTED TO GET RESTLESS, HE SAID HE WOULD RATHER SEE ME CHALLENGED THAN HELD BACK. HE GAVE ME HIS BLESSING BUT WHEN I PULL MY MED JOURNALS OUT FROM UNDER THE BED TO START READING OR REVIEW MY OLD CALCULUS BOOKS FROM COLLEGE I SEE THE WORRY BEGIN TO CREEP ACROSS HIS FACE.

MORE LATER-KJR

Well this has been a good week for my Crohn's disease and DH and I sat down to talk about how best to pay for the remaining pre-reqs that I have. I want to pay cash to get in the habit of keeping loans minimal and I think we can do it.

I admit I am struggling with the decision making process of going to medical school. My faith is a central part of my life and I know it must be taken into account when making this decision. I want to make sure that my motivations are clear and healthy before I make the final decision to apply. I know from watching others around me that when people start looking in the mirror instead of to their Heavenly Creator Father/God for their happiness and contentment that their life becomes unecessarily complicated and messy. I don't want that for my life and I want to know that my will is purely God's will. I want to make sure that I'm not going to medical school to serve some pathological need to understand and control disease processes that at this present age sometimes cannot be controlled and sometimes not even managed. Living with Crohn's for 10 years has taught me that we don't always fix what's broken and that while devastating; disease, pain, and death are very real parts of the imperfect world we live in. I don't want to become one of those doctors who takes every failure in treatment as a personal insult. I think that is one reason Palliative Care interests me so much with the spiritual nuturing involved as intimately as the physical. I think there would be freedom to embrace patients in Palliative care because when you help a person prepare for death and your goal is to aid in their comfort in the time of their life surrounding death then the professional self-protective walls that can be built when curative or management efforts are unsuccesful are a non-issue. You can embrace the patient and their choice not to pursue further medical intervention and nurture them wholly. I am very aware that the basic tenets of Palliative Care go against EVERYTHING I would be taught in medical school.

I read the message boards and wonder how realistic it is to maintain a healthy marriage and family life during residency. Maintaining these relationships during MedSchool doesn't worry me because My family studies and reads alot together anyway and academics have always come pretty easily. I've been blessed with a steel-trap memory. I have taken a spiritual gifts inventory and by a wide margain my strongest gift is that of discernment, then administrative, then teaching all in that order. I wish that in making the biggest decision in my own and my family's life that discernment of the right choice was so much clearer and easily sought. There still remains the sticky issue that the advice my GI doctor (Dr. A) gave me is to RUN as far and as fast as I can away from medical school. For the life of me his advice puzzles me because despite the usual and customary hassles of medicine he appears to truly enjoy his work and if he doesn't then he fakes it really well for those 20-30 mintues I see him every few months. I adore him and his advice means alot to me and the fact that we share the same illness lends him credibility in my heart that others don't have privilege to. I see him in another 2.5 mos. and I am thinking of asking him if I could "shadow" him for a few days. The impression I get of practicing physicians is largely shaped by the 13 radiologists I work with and from what I see the stresses that are described on this board don't exsist in any great measure for them. They work 8-5 with 1-2 Saturdays from 9-12 once a month with no call. It "appears" rather cushy even though I know there are things I'm sheltered from in my position. My doctors I work for are pretty happy people for the most part-that's encouraging. I know they work very hard and have a great volume of work but that is encountered with any job. I wonder if shadowing Dr. A during office visits, procedure clinic and hospital rounds might open my eyes realistically to what happens in a "typical" practice and the stresses that are unique to it. I perceive medicine to be a JOB, not some esoteric calling; albeit a job with the greatest responsibility but a J-O-B none-the-less. Most of the burn-out I see in physicians appears to come from a disillusionment that the disease, and compliant patients would bow at their feet and behave predictably. The belief that patients will do whatever it takes to get well and be eternally grateful when many of them resent the fact they even have to come see you to face illness with the inconvienence and expense in dealing with said illness can be unrealistic. Those expecations just seems like a sure-fire formula for disappointment and anger.

More later-KJR

Well I enroll tomorrow in Chemistry for the Health Sciences and Anatomy and Physiology or General Biology depending on what is still open and available. Classes will start January 19th and we have been able to budget so that I can pay cash. The freedom of not filing for financial aid is terrific. I hate the FAFSA it either makes me feel really poor (which I'm not) or very marginal which is worse than poor. It's like the government says "Yeah you could sure use help, but we think eating ramen noodles for a semester will build character.". I'd rather just take my chances on my own and circumvent Uncle Sam completely.

This week has continued to be great for my Crohn's Disease. My energy and libido has returned with a vegence and less of my hair continues to fall out from the methotrexate which is a good thing. I don't look sick and I don't feel sick and I think I could get used to that.

I've been doing a lot of reading this last week. I've read "When Doctors Get Sick" by Harvey Mandel and "One Hundred Days" by David Biro. Both of them were terrific books for very different reasons.

Mandel's book made me laugh several times at the doctors relaying their tales of gross hospital lunacy that comes with 2am medicine rounds, 4am lab draws and 6am vitals checks. I loved when they came away from their experience with an awareness that everything they order comes with a price to the patient. It also tore me up when they spoke of the anguish of uncertainty in a diagnosis and the hostility that develops towards those who want to help you most (family and nurses) with those exceptionally long hospital stays that can drag on for weeks and months like my last major stay. I cried several times throughout the book. On a less emotional level it was like reading a patient chart only with alot of the curiousity about the emotional or spiritual state of a patient satisfied. The clinical breadth if not the depth is fascinating and useful.

Biro's book really piqued my interest in immunology and what that could mean for my future. Why did my thymus allow rogue T-Cells out and about to screw up my body? What is the future of T-Cell depleted bone marrow transplants and their potential implication for the future of auto-immune disorders? What do stem cells hold for the future of auto-immune research? He is a fantastic writer and I picked up so much clinical information and a crash course on immunology to boot. He also talked about the hostility that can develop during an illness and the sacred dance between doctor and patient when outcomes are unknown and life and death treatments have to be decided with research pulling you two opposite directions.

I think any medical professional being sick is a scary prospect because you have such intimate knowledge of everything that can go wrong and have very set ideas about how things should be done. I related totally to the one doctor who became rabidly protective of his central line after he'd gone septic and the how the nurses treated him differently (not in a warm friendly way either) after he insisted on aseptic technique every time they touched it. I know central lines while a great relief to me in so many ways caused great anxiety when my past experiences were riddled with thromboses and infections. The terrible thing is that part of me knows that I might relate to patients on a more intimate level because of my own experience but the fact remains that just because I could relate to them I won't always be able to relieve their anxiety. I also know that such a depth of empathy can be draining on a person when your heart gets tore up and your sack of "tricks" (read treatment options) is running low.

For now while my husband and I pray about a medical school decision and I work my way through volumes of well intended fiction and non-fiction before classes start I am working on reconciling myself with the woman of Proverbs 31 thanks to the advice of another member here (thanks Victoria). I know the stresses of having a family and higher medical education are often antithetical and the more I comb through commentary on this passage the more I come to fully realize what an AWESOME responsibility that God has given me charge of with my family and others around me. It weighs on my heart what tenderness I bring to the home as a female and that presence wouldn't be as fully or completely there. I better realize how little I know about myself and have to do the hard work of reidentifying myself in the image of God instead of the world's image of wife, mother, employee, student and most of all patient.

On a lighter note-I finished the article I was writing about the ten-year anniversary of my Crohn's diagnosis and a synopsis of what is RIGHT in modern American Medicine. I will hand it off to my editor friend this weekend and have plans to start an outline of an honest-to-goodness book. :wave:

Well this week has been pretty interesting. My Crohn's is doing fabulously. No nausea, output is under control, no sore joints, and no fever of any kind-I'm rockin' along-PRAISE THE GOOD LORD!! I'm starting to feel like I did P.C. (pre Crohn's) and am dreaming of a new year with no hospital or ER visits for the first time in 10 years. I have the Bob The Builder song in my head as I write this "Can we do it? YES WE CAN!!" :boggled: We'll see soon enough! Well of course that Chem class conflicted with my Biology class so I had to drop that Bio class and get special permission to join another Bio class on opposite nights as Chem :banghead: !!!!! It all worked out-DH is happy I'm keeping on track and being a "prudently good steward of our financial resources". I'm nervous regardless of all those nice things he said to me. Next time I write I'll have the first night of class under my belt.

More Later-

KJR

Well I'm feeling such a myraid of things right now this very moment. A good friend called who've I have been talking to about her son off and on for several months. Her son is a little younger than me and has had some serious post-op complications. He has become physically dependent on pain medication for legitimate reasons and is frustrated because he feels his life has come to revolve around his medicine. I remember when I was at my worst physically and I lived for my pain meds every four hours. It made the pain "tolerable" the pain never completely resolved until MONTHS later and it would make me loopy enough to where I didn't care and sometimes I could even mercifully sleep. My heart breaks for him and he's clinically depressed to boot. I remember the depression being so severe I often hoped I'd never wake up. I didn't want to leave the safety of the hospital and deal with 6 months of mail, unpaid bills, student loans coming due, short-term disability paperwork, and bill collector calls. It seemed so cruel to cocoon me in the hospital for 3 months then send me back out to the wolves to be eaten alive. I wasn't strong enough emotionally to deal with it. I'm really sad that nobody looked after his spirit and mental health and angry looking back that nobody-not doctors, not nurses, not case-workers ever asked how I was feeling or "dealing". Why when you're chronically ill the very innermost core of who you are as a patient becomes invisible to those who are trying to fix your body? Good grief I'm about to cry :ouch: this hurts! Writing in this blog is terribly therapuetic I probably should've been writing about these issues a lot sooner. I wish I could go see him and give him a hug.

How does this pertain to my med-school decision? Well I'm wondering if I could be objective enough to treat patients the way they need to be treated, and still not be so objective that I lose sight of the patient in front of me and who they are as people. Now I don't think every patient would affect me like this because obviously some are more critically ill than others but the tough cases would be the hardest to remain objective about. Not just knowing but having experienced the complications of surgery, TPN, and central lines would that make me prolong decisions about these treatments for my own patients? I need to seriously figure this out before I even apply for the April 2006 MCAT.

Well DH and I bought me a digital watch today for class that starts next Wednesday and I got my notebook and I feel a little more ready and the closer I get to Wed. the more butterflies I'm feeling.

I had a couple people PM me about how I picked out my handle and what does it mean. Fearlessphoenix has been my handle for several years. A phoenix as most people know (or anybody who's read Harry Potter or seen one of the movies) is a mythical bird that has the mystical ability to carry great burdens beyond what would be expected. When the phoenix reaches the end of it's life-cycle and dies it bursts into flames and becomes a pile of ashes only to rise up in a resurrection and be reborn. With my Crohn's and a distant history of anorexia I've carried burdens that I didn't know I was capable of carrying and that loved ones around me didn't know I was capable of carrying. I've not only carried it but I've even experienced several rebirths in my self-confidence and my spiritual life for having carried these burdens. I've got a deal going on with God-I've reached an agreement with him that I don't need to be cured of Crohn's as long as he uses it and me to further his kingdom. It gives a senseless disease some scope of sanity. I feel privileged that I've been trusted with this disease-reading through the book of Job in the Old Testament I've come to realize that the most faithful are trusted with the toughest tests of simple faith. Do I get angry? Sometimes. Would I like answers to "Why me?", not anymore just an answer to "What now? What do you want me to do now?". The "fearless" part of the handle is because I've become pretty fearless when it comes to life. I'm not so afraid of rejection, I'm more apt to seek intimacy and risk vulnerability (I've been rarely disappointed and that has probably influenced some of my attitude) in my relationships. I know that I'm going to be 30 years old whether I'm in medical school or not - so my age is no longer an excuse for me and the better I begin to feel my fatigue and fear of ambition interrupted are no longer an excuse. For many years of life I didn't undertake any great projects because they were frequently interrupted with hospital stays and relapses, how much I've missed!!

I'm joyful most days and those days that I'm not I don't beat myself up I just spoil myself with a few extra girl-scout cookies, a trip to Barne's and Noble or an adult beverage and extra prayer. I don't need to be perfect, just faithful.

More later-KJR

In Sunday School today I had an "AH HA!" moment. I love those moments when God speaks to you through his word and older and wiser people and in the great socratic method that's apt to be used when (not if-but when) he leads you to the conclusions that you've been wanting and waiting for.

We were going through the first 4-5 verses of the book of James and part of Hebrews chptr. 12. I've been so focused on my identity in God (which is important don't get me wrong) that I had convienently ignored whether the pursuit of medicine was God's calling in my life. This makes me back up and take back something that I said that was wrong in a previous post-I said that I didn't believe medicine was some esoteric calling but rather just a JOB. I have to admit that I'm wrong and perhaps by my making such a vehement blanket statement I was the proverbial osterich putting her head in the sand out of fear of failure. Fear of failure in Bio. and Chem., fear of failure of getting into medical school, fear of it not happening on the time scale I thought it should happen. By reducing medicine to a job I reduced it to a series of hoops to be jumped through rather than something deserving of the grave and awesome respect and work that it requires. Do I think practicing medicine is by and large a romantic profession? No, it involves a lot of stinky stuff and bureaucratic tedium, does that make it any less of a calling? I'm adamently realizing no it doesn't.

Well in the book of James it talks about the consideration of affliction and to take joy in the many trials of life. Consideration is a thinking activity and a concious choice. I've come, I believe, pretty much full circle on this joy in affliction thing as described in a previous post in this diary. I also have learned that we don't have be joyous about the affliction rather we are to be joyous about the end result of a stronger faith and the perseverent character building that happens when allowed. The huge "AH-HA" moment came when we were talking about the dirty little trials hidden in our lives that we don't share with anyone-sometimes we don't even share them with ourselves-this is denial. My deep-down dirty little trial that I have to deal with in my life is "FEAR" (despite my own protestations to the contrary). Everytime it seems I've gone out on a limb to pursue anything of worth in my life it has been interrupted with illness and hospital stays; my wedding, my bach. graduation, my choosing of a life's profession all those things that should happen in your 20's as a healthy adult were interrupted repeatedly for me. The thought of being called by God into a healing profession requiring a decade's worth of studying and training was obviously repugnent deep down to me. What me God go to medical school? You've got to be kidding-I've just begun to heal physically, emotionally, and spiritually and you want me back out on the game field? I had to realize it wasn't about ME enjoying health and predictability in my life that my health and predictability as a Christian woman were to be given to God for His use. It was a struggle of fear-will I survive this? . . . and of self "I don't feel like getting back out on the field to risk being dog-piled thank you very much!" The huge part of the "AH-HA" moment was God gently nudging me to the rational realization of the fact that we (we being God and myself) did in fact accomplish everything set before me-it just didn't happen like I thought it should or when I thought it should . . . this is how I will be forced to face the rest of my under-grad pre-reqs and medical school and ultimately residency and fellowship, one semester, one week, one day, one class at a time, confident that I won't get through it by myself but with God next to me and carrying me along. I need to cast off my garment of fear and run the swift and efficient race to which I've been called so that I can be as healthy as possible in body, mind and spirit otherwise my future patients will be faced with a crippled and broken doctor.

More Later
KJR :scratchchin:

I start class tonight!! :goodvibes:

Well Chemistry class was a study in human nature if nothing else. I got to class a few minutes early and took stock of my future classmates in the room. I know it's wrong to pre-judge people but there are some personalities I don't want to surround myself with by choice.

I chose not to sit by the nest of 19 year-olds who were talking about how tired they were after working a six hour shift and many exclamations of "Oh my GAWD!" when one confessed her slave-driver boss had her working ANOTHER 4 hour shift the very next day (when was she going to fit in her tanning-I promise you this was an actual conversation). :rolleyes:

The next group I cruised included older men probably in the 40-50 range. It's been my experience in the past that these guys are notorious professor hiney kissers. One of them didn't "meet in the middle"-for those of you that don't know what I'm talking about his shirt did not meet his pants. I didn't want to be stuck with a lab partner wondering constantly if he was going to walk out of lab with singed belly hair!

There was one older lady who looked very tired and cranky I really didn't need that . . . which left one group.

The clique of international students. This group is definitely for me!! They have superior math skills to most American students, they have excellent work ethics and their limited english keeps conversation to a minimum so we can get work done. I love my little group and have met Phuong and Lara and befriended them pretty easily. I found my Chemistry buddies!!! Yeaaa!!

My professor is quite a different matter I think she's had excessive mercury exposure. This woman (in her early 60's at least) giggles a lot when speaking with this absolutley perfect southern drawl-maybe I'm being cynical and she's just a happy person generally but after awhile it seemed a little twilight-zoney for my taste. Also I thought I was a TYPE A personality but I have absolutely nothing on this woman. I have to buy a specific notebook, with specific dividers, and specific divider pockets (seperate from the previous looseleaf dividers) and a certain notebook paper to take notes on. This seemed a little overboard to me but I will comply cheerfully because there are certain parts of these notebooks we can use for quizzes . . . I'm all about that! I'm just not used to being told how to organize my work so this will probably be a learning and humbling experience for me. It just made me feel like I was Junior High again.

Well we watched a video where we learned not to cap test-tubes or beakers we heated, don't add water to acids and if in need of the emergency shower we are to strip naked immediately and get rinsed off-I could only picture "doesn't meet in the middle guy" and nearly giggled myself.

After signing a contract that promised I wouldn't administer first aid to myself, solemnly swore to wear goggles always and forever and not ingest any of my experiments I became an honest to goodness Chemistry student.

I have biology tonight and my professor is male (I prefer male professors). We'll see how that one goes. I get to buy my textbooks tomorrow morning and join the campus fitness center. Now that I've proved to my doctors that I can indeed gain weight (sometimes difficult with Crohn's doing what it wants with your body) it's time to take it off. I will no longer stash a 24 ct box of Coke at my desk once this one is gone and no more Sonic corndogs for breakfast! I will reform and do better!! :goodvibes:

I have a bunch of neat projects coming my way and my dilemma will be staying focused on school for now. I had a great talk with Dr. K over lunch today and he was very encouraging of my goals. He also told me that getting a residency position in a university hospital will make me much more marketable and competitive-that will definitely be something I strive for. :crossfingers:

More Later-
KJR

PS: Hi Ho! Hi Ho! it off to class I go! :cloud9:

Now Biology class is just way cool!!! We will have the opportunity to dissect in class various animals, eyeballs, and brains. Once upon a time this might've grossed me out but quite frankly those are the labs I'm most looking forward to!

As far as my professor is concerned he's a pretty cool guy-looks like a hippie in preppy clothing and has a great sense of humor. My eyes are bad so I sit up at the front of the class and this made me the inevitable target of a lot of questioning last night. I was the last one to make it to the lab after a break so I didn't have much chance to be choosy about my lab partners like Chemistry the night before but my table is by far the most fun table. There's Diana, Cheryl, Thuong, and William. We were the first table done with our assignment last night (my upper level math served the group well) and were labled the "smart" table by the professor then we got a little noisy talking and comparing professors and were then labled the "rowdy" table (I think we're the smart-rowdy table). Apparently the table we were sitting at in the corner has a reputation from previous classes of being less than stellar in performance so the fact that we were done far quicker than the other groups with right answers threw poor Prof. B for a loop. My table mates are an interesting bunch, one is a massage therapist and licensed hypnotist, the two boys are wanting to go to nursing school (good for them my favorite all-time nurse ever at St. Luke's Hosp. was a an old Navy guy) and Diana is still deciding what she wants to do and is really sharp. This will definitely be a good class! :boggled:

Well I'm writing this from the nurses' station at the hospital still and wanting to go home. It's amazing how in one quick phone call your plans for a week can change.

My DH and I were out Friday night and I complained of some abd. pain but let it go after we got home, got a hot shower and climbed into bed for the night. I woke up Sat. morning with the same type of stabbing pain but blamed ot on hunger and/or gas and went to breakfast with DH and packed my bag for our study date we'd made. We went to the downtown branch of the main library and I was studying biology (interestingly enough reading about viruses as legions of homeless people were hacking and coughing all around us-I can only imagine that the paranoia of illness gets worse from here on) and muist have been making funny faces because DH leaned over and whipered if I was OK. I nodded that I was OK but a little hungry (this pain must be gas or something) and we left to eat at D'Bronx-my favorite little deli with the best chicken pargimana sandwich. I barely kept it down and DH insisted that I go home and rest to figure out if the pain would be alright. Now what isn't being said or mentioned is how well I've been doing for the last 3.5 mos and my Crohn's is probably the closest it's ever been to remission-so there's no way I could be "really" sick. We went home and I got undressed and laid flat on the bed and noticed that the left side of my abd. was swollen and extremely tender to the touch. I started to quietly freak out because the only thing on the left side of my body is my stoma and I just had visions of nasty obstructions or abcesses. I took my temperature and it was normal so I finally gave in and did what I should've done 24 hours earlier and called the GI doctor on call who instructed me to go the Emergency Room.

When I presented to the ER they ordered the usual and customary tests that are so familiar with me. A CBC, Metabolic Panel, KUB and CT Abd/Pelv. the recurring theme that night that was different than other visits however was "Could you be pregnant?". I encouraged them to do any tests that would put their minds at ease but knew I wasn't pregnant-that would've been to easy. I had a gut feeling (ironic since most of my guts have been surgically removed ) that something was really wrong. My KUB was negative and labs were realtively normal for me and they postponed the CT until the next day so that I could be prophalactically medicated for Iodine contrast. They admitted me and I got to my room 3:30 am Sunday morning. I was stunned I knew seomthing was wrong but was admission really necessary? Dr. U came by the next day to explain that I would be getting my CT later that afternoon and my mom was visiting when he came around to check me out. I was wracking my brain for what could be wrong with me . . . I wasn't dehydrated, no abcess that we could tell, not obstructed, maybe adhesions? Dr. U admitted that could be a possibility and told mom and I that he anticipated a negative CT and my question of course was if it's negative can I go home tomorrow? He wisely ignored that question.

Later tht night my nurse came by and said she got the results from the CT and she needed to talk to me about treatment. I've been around the block a few times and know it's never good when the nurse tells you your test results-they almost always make you wait for your doctor the next day so I knew something was up and really wrong. She told me Dr. U had called and wanted to start me on Heparin because I had a blood clot in my left renal vein. I started to cry I was scared. I wasn't scared because I had a clot (I've had multiple DVT, PE, etc. this was old hat) I was scared because it involved my kidney. I've seen a dear friend at work lose her kidneys and endure dialysis and two failed transplants and the pain and suffering inherent in renal failure seemed to be of a whole different magnitude than anything I'd experienced with Crohn's. My prayer right that moment was "Dear God-Anything but my kidneys". I felt stupid and angry that I had been feeling symptomatic since last Thursday/Friday and thought I'd wait to call my doctor until the following Monday (the pain was the only thing that drove me to call sooner) to be checked out. I swore if I lost a kidney I wouldn't forgive myself. I cried and cried and my poor dear nurse tried to comfort me the best she knew how. Comfort for me meant that I want to see the radiology report for myself-I wanted to know-where exactly this clot was, how big it was, I wanted to know the potential for diffrential diagnosis, anything to make it manageable and true. She couldn't do this for me but could only carry out Dr. U's orders and reassure me that he would be around the next day to explain it all to me.

Dr. U came around after Dr. B (my resident) came to check on me and told me he had spoken to Dr. Y (she's one of favorites-reminds me of two of favorite rads here at work-Dr.D is pretty cool to at SLHP-he laughs at my dumb jokes)in radiology- Dr. Y he said would come up to talk to me about a procedure to "blast away the clot with TPA under angiography". There was concern about thinned blood and any incidental ulcers from my Crohn's bleeding profusely but I wasn't terribly worried about that-it wasn't my Crohn's that was active and if it was there are blood transfusions (having had several we learned my husband is A+ like me and is my own personal donor-when we made vows to take each other and cleave as flesh of my flesh it had so much deeper meaning with his blood running through me). Dr. Y explained it to me and then said that she would send for me after her 12 noon biopsy-these people move fast. I asked for a central line because at this point they were barley getting my IV's to last 4-5 hours and there are lab draws all night in the ICU while the angiograpy catheter stayed in me and the veins in my feet were giving out. She placed a rt IJ line at my request-my arms are lost causes-it's either an IJ line or subclavian at this point-either one was fine with me. My usual fears of thromboses weren't justified in my mind being on all these blood thinners and infection didn't bother me because I only needed it for a few days. She began to give me the twilight sedation and began the procedure. I kept telling her I was nervous and I think she kept sedating me but I was so out of it I couldn't get it out of my mouth to tell to stop the sedation - I was nervous but wanted to watch what was going on. I fought sedation and watched the most beautiful procedure unfold. They found the pesky clot and the fact I have two renal veins on the left side which is probably the reason for normal BUN and CR results. She tried to remove it but decided on plan B to leave the catheter in and send me to ICU for the night and we'd recheck it the next morning.

I have always hated ICU more than anything. You have no control real or deluded in that place but my nurse in ICU was a doll - B.J. she was a good nurse and friend-it also didn't hurt that I was her only patient for the night-I was spoiled. At one point in the evening she brought in a friend to "scooch" me up in my bed (couldn't move my right leg at all per Dr.Y) and I joked that that was the first time my granny panties and been turned into a thong in one swift motion :laughing: .

The next day Dr. Y found it had been dissolved -laying there at night I was struck with how much this procedure resembled a game of "Astroids". The TPA pump fired a shot every minute or so that sounded like a cap gun and made me jump until I got used to it.

I resigned myself to the fact that I was stuck here for a few days and started to crack my books open to study and take my mind off of things. Dr. A called Thursday right as I was starting to wallow in self-pity and feeling antsy about getting out. He has the inevitable effect of cheering me up and told me he would be around the next day on rounds and evaluate me for discharge. WOOO HOOOOO!! Dr. A ROCKS!!! knowing that I was going to be busting this popsicle joint I slept like a baby that night. I tried to conn him into doing some of my homework but he explained if he didn't do his 14 yo son's homework he wasn't about to do mine -can't blame a girl for trying . . . we also caught up on my current reading list which has included just about everything Dinesh D'Souza has written-very inspiring writer BTW.

I don't know that there's much else to add other than the day ofter I was discharged I was found to be the proud owner of ovarian cysts-I have a new found sympathy for my patients-these buggers are NOT fun.



More Later-KJR

This has been my first day back to work and school and it has been an emotional roller-coaster.

I bawled like a baby on my way to work - I didn't wanna go . . . and bawled when my mom called to check on me, bawled in the girls room after Dr. N offered kind words and encouragement at the lunch table . . . bawled because the Coke machine was empty and I was forced to drink Pepsi. You get the idea
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Well I got through yesterday alive and in one piece without hiding in the bathroom or under my desk.

Today is already a better day. I went to class last night and sat under the tutelage of my nuerotic Chemistry professor. I had already taught myself Stochiometry from the text book when in the hospital last week and was pretty confident in my ability until she tore it all apart with her own method which we must use on tests perfectly if we want credit for our work. She made a seating chart and my showing up really threw her for loop and the fact that several people dropped the class (it's not hard material-she's really just extremely crazy). So not only do we have assigned seating but she stamps our notes, group work, and homework with a pink heart stamp . . . good grief this feels like 8th grade!!! I'm post bacc. with a Bachelor's of Science and made Dean's List while taking 23 accelerated course hours and working full time-please have mercy-leave me alone :p !!! This is a cake walk compared to that.

Good news is that the open hostility displayed by my peers in class exhausted me mentally (along with pointing out her equation and computation errors on her handouts and Power Point slides-10 mistakes I found and pointed out-which got me sent to the nosebleed section of the lecture theatre :goodvibes: .

I'm looking forward to Biology tonight and hope it does the same thing only in a more "adult way".

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Last night was a tough night. My husband's brother had been diagnosed with a brain tumor several months back and it has upset him mightily. He has been concerned about whether or not he has a tumor in his own brain and I tried to reassure him that being asymptomatic (his brother had visual disturbance, headaches and personality changes) he was likely to be fine but made an appointment with our FP (Dr. K) to talk about it and have an MRI ordered if needed. Dr. K talked with him and gave him the order if he decided to go through with it. He scheduled at one of our offices close to home and went to his appointment yesterday afternoon. Dr. H (one of the docs I worked for) called and told me she read my husband's films. I joked with her for a second about did they find anything up there? Is he officially normal? She didn't really joke back and so I got real quiet and asked her how it turned out. He had some sinus disease which we suspected but they also found a meninigioma that was 5mm x 8mm. She said she hated to even mention it that is was a relatively minor finding and would require followup in two to three months. I thanked her and hung up a tad stunned. I went to various web-sites and read what I could and was reassured that this was typically benign and slow growing and grew in protective membranes and not the tissue itself.

I did not want to tell my husband. He picked me up from work and was driving me to school and popped the dreaded question. I had decided to be straightforward with him and deal with the aftermath as best I could. I explained I'd rather talk to him about it after I got back from class but he insisted on knowing. I told him basically what I wrote above and I could see tears welling up in his eyes (the last time I saw him cry was our wedding day when he first saw me and boy was that man a mess-I decided right then and there to use my "power" judicially in our marriage)and I knew he was putting himself in the same boat as his brother. He didn't want to talk about it further and we drove to class in silence which is not typical for us. I worried about him all night and he was a little short-tempered when he picked me up which IS NOT in his personality at all he has the patience of God (you need it when living with me ) I asked him if he wanted to talk and he said "no". I dropped it and told him I would be there when he was.

He came to bed about 1:30 in the morning and made a fair bit of noise and commotion which I took as my cue to actually open my eyes and sit up. He was playing Playstation and he mumbled "Are you awake"-"Yep" I replied my heart thrilling at the prospect of talking this elephant (you know the proverbial elephant in the room everyone knows is there but refuses to acknowledge) out of our room for the night. He asked if I was worried and I reassured him that I wasn't (can't afford to be truthfully, someone's got to be strong and keep their head about them). We sat up and talked I told him why I wasn't terribly worried about this which by no means meant I wasn't concerned about him and the snoring that so often requires me to shake him awake was a source of comfort because I knew for the next 5 hours he could shake this demon from his mind.

Please keep my DH in your prayers, his spirit as much as his body if you would and remember me as I work to be an encouraging, cheerful and prayerful wife. I adore this man and I cannot think of losing him (not physically I don't see that happening) but emotionally and intimately. :boxedin:

Last night was soooo much fun again in Biology. I really like this professor. I have it figured out that Chemistry I with the nutty professor is the cross I must bear to pass over the threshold to Chem II and that Biology is God's little way of smiling down on me and making this whole endeavor ALOT of fun.

I nearly went home after lecture because I hadn't eaten for many hours and was starting to feel nauseated :goodvibes: . Alot of the class was having problems because things like the common bile duct and duodenum and the three parts of the colon weren't broken down in the text book but required labling on the worksheet. He gave me half the class and he took half the class. My group seemed to having more fun than his and we were soon chanting "Follow the poop! Follow the poop!". That's all the GI system is and if you make it simple for them it doesn't seem so scary. They asked all sorts of things. How do gall-stones occur? What happens if your colon gets diseased or they have to take some of it out? What keeps your poop from falling out of your body? Why do we have an appendix? What does the spleen do? And on and on. I explained it in rudimentary terms so I didn't confuse myself or them.

Interestingly enough when we got to the part about removing colons and small bowels and resections and ostomies of all varities one of the girls exclaimed "I would just die if that happened to me!" :rolleyes: . I reassured her that she "wouldn't just die" if it happened to her but she just might die if she allowed her obstructed colon or small bowel to rupture and then yes, you just might really die because you have feces floating freely in your abdominal cavity and some people really DO die miserable deaths like that. I for one have an ostomy and they all got really quiet and I told them specifically I have an ileostomy and pointed out that my life began to open up to me after my surgery. I could stay in class during lecture regained my confidence to go on dates that didn't mandate we sit next to the bathroom, I felt shiny and new because I didn't have active disease wearing me out. She said "wow-I didn't know that actually happened to people" I assured her it does happen to people with various diseases and cancers of the GI system and that my reaction before my surgery was exactly the same as hers and don't feel bad for her initial reaction (I was there once) but to really keep things in perspective-the world is sooo much bigger than your gut. She hugged me after class and I walked her to her car later and told her take what I told her and help someone else. . Thank you Dear Lord.

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PS: DH and I are finding a sitter for tonight and going out to a nice dinner with dancing-I'm very excited . . . Now where did I put my "Come and get me dress"? :laughing:

PPS: Numbness wearing off day by day . . .

This week has been fairly uneventful except for my brother-in-law's brain surgery. It was a little upsetting because it was originally scheduled for KUMC (Popcorn's home away from home VERY excellent nuero unit) and then last minute was moved to the VA center. The reputation of our VA hospital is such that you don't go there for stitches let alone brain surgery and this change upset DH. Thankfully they flew a surgeon in from Atlanta, GA to perform the operation and it took a little longer than they anticipated but he made it through pretty well. It was determined that the mass was indeed malignant and they didn't get it all out during the surgery for fear of permanently damaging his optic nerve. Word from my MIL is that they plan on treating the "left over stuff" with "medicine". Still have not figured out entirely what is meant by "medicine" whether it's chemo, radiation, voo-doo, or something else entirely. My husband's family is very strange to me because in my family everyone knows EVERYTHING about everybody's business and their family seems to be really private-from the outside it always looks a little cold even though I know they aren't but our families are so very different. For example it was really important that my husband not only like my father but had potential to be good friends with him same with mom to a certain extent. By contrast I never really sat down and met his parents until our rehearsal dinner the night before the wedding. By that time my husband had already taken a fishing trip with my dad, gone along on vacations, and hung gutters on my parents' house and had Sunday dinner weekly with them for over a year and a half. This might seem weird to some people but since my diagnosis I became closer to my parents than I ever was growing up and I know that to be married to me he would need a support system for those times when I got terribly sick. That happened while I was in the hospital during 10/02 thru 1/03 and sure enough the three of them began to "gel" and lean on each other a little. I didn't worry about DH (then fiance) so much because I knew mom and dad "had his back".

I got 100% on my Stochiometry test Tuesday night-I was one of 4 people in the class to do so and I was the last one to leave but I did it!!! :goodvibes: . For anyone interested March 30th is National Doctor's Day. I always try to do some little something for a few of my docs that I see the most but most importantly I will be commiting their spirits, minds, hands, health, and practices to prayer. I believe that physicians are often battered and beaten with all the abuse (of self, disease and by other people) they see in their patients that it weighs heavily on them to long for a simpler life. Perhaps my prayer for my doctors will be for simplicity in their lives and a hedge of protection for their spirits :grouphug: .

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This week has gone really well for my Crohn's disease. I see Dr. A in a few weeks and I can't wait to show him how healthy I feel and look. He has been through hell and back with me and I'm looking forward to giving him good report. There have been friends who have accused me of suffering from "Stockholm Syndrome" that mysterious affliction where a hostage begins to empathize with and defend her captors because I like and enjoy my doctors so much. These people usually are guided by the misconception that my doctors hold me hostage when in fact it is my disease. My doctors are actually my "hostage negotiators" and this has been a healthy paradigm shift on my behalf. There was a time in my life when I was horribly non-compliant and refused certain medications, sedation, lab sticks and barium contrasted tests. I hated taking the medications they prescribed every four hours because it was a constant reminder that I wasn't a "normal" 18 yo. Doctors were my nemesis-I was angry with old man Crohn's and since I couldn't take it out directly on him my poor doctor was the next in line. In general I made a pain in the butt of myself in fits of immaturity and denial. God bless physicians who stick with patients in that mindset . . . I'm an example that sometimes we turn ourselves around with a little patience and love.

Chemistry class is going down-hill really fast to the point of no return. I have for the first time in my long and sordid collegiate career lodged a complaint with a department chair. Her shouting and belittling has reached a new crescendo and must stop. One of my classmates recorded her tirade and had already talked to the Dept Chair before I did and he said because of the number of complaints he is being forced to look into the problem-at the very least she will be recieving a suprise visit. It is a twice weekly struggle to muster the where-with-all to go to lecture and lab is sheer hell. I would rather shave my head bald than ask her for help because she shouts and points out perceived shortcomings to the entire class, and it's not just me . . . Ironically I'm being tutored this weekend by one of my HMO reps, you know it's pathetic when your HMO reps know you well enough to tutor you through class It could only get worse from here. So now that I'm completely honest with myself that most days I want to hide behind my voicemail or under my desk :scratchchin: . I would be pretending that I'm something I'm not. I want to inspire someone else to ask questions that haven't been asked, find answers that haven't been found, maybe even be privileged enough to help unravel some small auto-immune or cell differentiation mystery that would supplement someone else's research or lead to a treatment or drug innovation that hasn't been explored yet. That excites me to no end, I feel a deep peace about that dream.

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For heaven's sake I didn't expect my last post to generate so many responses from some of my friends here who emailed me on my private account or those family and friends that go to church and school with me.

They are interestingly split down the middle, "No! Don't give up the MD dream!" and the other camp "This is the wisest decision you'll ever make". One good friend even said she was saddened that women such as myself wouldn't be tomorrow's physicians but knowing what she knows from having practiced herself and walking away from it she said it probably the healthiest (in the truest sense of the word) choice.

Ladies, the truth is I think so much of the inner-tumoil I was feeling about this decision was the fact that I knew I am called to medicine but wasn't sure why, how, or even where. The most obvious thing that jumps out at you when you begin to explore a medical career is Doctor or Nurse, I had some inkling but no real true understanding how many choices we all have for medical careers that make for outstanding and rewarding lives.

Obnoxious patient of the week award goes to the spleenomegaly lady who threatened to make me pay for all her lost therapy appointments when I explained to her that we needed to reschedule her appointment or make out of pocket payment arrangements if she wanted to keep this appointment because her HMO had not approved her test yet. I tried my best to explain that her doctor and I had been doing all we could for the last five days to get this approved but her HMO was dragging its feet. She didn't want to "hear that from a dumba*! :twocents:

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This week has been good for my Crohn's. Maybe I'm a little superstitous but since I've been writing that every week here in my diary I've done well so for every week it's true I'm going to keep writing it. I'm pretty much a rational person in most day to day things so it's funny to read what I just wrote. But like March Madness and Big 12 basketball season any little effort for "your team" counts for something. Confession time-I have a KU Jayhawk nightshirt that I have worn during every March Madness season since I was 12 years old-even when in the hospital-it connects me on some unseen level to my team. I know that's silly to some of you and others will completely get it. But there it is-I'm nearly 30 and still wearing a lucky t-shirt from when I was 12 :goodvibes: , something my Jewish brothers and sisters understand but sadly many Christians ignore in pursuit of grace.

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"There are those who say to God 'Your will be done' and then there are those to whom God says 'Your will be done'."
C.S. Lewis

.

:goodvibes:

I stepped out of the car and that fresh rain smell hit me like a wall. I breathed deep the wonderful smell of a fresh beginning and am ready to start all over. After all isn't that we all do? Just start over . . . and breathe deep. :grouphug:

Yes Prof. B I'd love to help teach tonight.

KJR

Little post to tell how very proud I am of my kiddo. Kiddo competes in Bible Quizzing on our church district and last Saturday qualified for for "World Quiz" set for Indianapolis in several weeks. He will compete against neary 3000 other children from all over the contry and world. He has mastered the books of 1 and 2 Samuel and memorized nearly all of his 20 bible verses. This was his first time to compete in an organized "team" type thing (he has three other friends he goes with from church but as his level they compete as individuals). He is so proud of himself he can't hardly stand it; I am proud not because he "qualified" but because I see a sense of spiritual awareness blossoming in him over this last season as we explore the concepts of obedience, faith, anger and reconcillation :cloud9: .

Sadly his mother (my DH's ex) was noticeably absent which disappointed him greatly-if she only realized what's she's missing . . .

GOOD NEWS

Went to my appt. with Dr.A (GI doctor)yesterday afternoon and me gave me the honorary status of his "Methotrexate Poster Child". :cloud9: . I see him again in two months and I'm going to be bold and actually start discussing the "R" word : REMISSION. I have faith that God will change what has always looked impossible and make it possible.

Also discussed where I'm at on my medschool journey (he checks in on the diary every now and again) and told him that a PhD, teaching and research are slowly revealing themselves as my calling. He was very pleased by that and excited, discussed several auto-immune concepts that are critical solvency issues to make any real break-throughs in the treatment of Crohn's disease to move us past the Pentasa and Remicade status quo which is of little benefit to those patients with severe and progressive disease processes. The breakthroughs on Chromosome 16 may help unravel mysteries for treatment (and dare I use the word "cure"?) for MS, RA, and sarcoidosis among others . . .

Writing this makes me painfully aware of my responsibility to myself and others to study diligently and prayerfully. My homework in undergrad is as meaningful as anything I'd do in grad school because it is the foundation of any question I will explore in the future. The better part of science I'm learning isn't in finding the answer it's knowing the right question to ask. I must know enough to find the right question to ask . . .

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- which was thrown by some of the ladies at church no less :rolleyes: ) and slipped them in my pockets with a key. He got home and I didn't look up from reorganizing the Tupperware in the cabinet and asked how his day went. "Fine" I was told. "Really just fine? Nothing exciting happened?", "No, Kris, everything was OK." "Would your answer change if I told you your teacher called?" "Well I had some problem but not that big of a deal". I explained to him that he seemed to be having difficulty making wise and kind choices and grounding him from his media (TV, Gameboy, Playstation etc.) didn't seem to make a difference so since I was on vacation I decided that tomorrow we would go to school together handcuffed together so I could help him make good choices, DH wasn't going to swat, I'm not going to shout or ground, but we'd try something new. His teacher said she'd find me a chair and I could meet all of his little friends and I heard tomorrow was Pizza boat and peaches day - I was really excited to meet his bus-driver and this little girl that suddenly has him cleaning his fingernails without being asked! :rotfl: His look was so horrified and I said I picked out my favorite outfit - my oversized Big-Smith overalls, tie-dyed t-shirt and Birkenstock sandals. He started to cry. "Oh don't cry - I promise I won't get in the way - I'm just going to help you make good choices - I won't talk in class." He whimpered please no, I promise I'll make better choices, can I pick a punishment instead? PLEASE? DON'T GO TO SCHOOL WITH ME! :weeping: It was soooooo hard not to laugh and I asked him what he thought his punishment should be - He grounded himself worse than I ever have, slaved in the kitchen organizing the pots and pans, cleaned the bathroom, and wrote his teacher the sweetest apology note ever. I told him I suppose he could choose his punishment this time but next time there wouldn't be any choices I really wanted to see what happens in the third grade now-a-days. His teacher wrote a note back home . . . "Dear Mrs. R - I'm not sure what happened at home last night after our call but J seems to have really settled in quite nicely after our little problem . . . " The handcuffs are hung on a hook on the fridge as a little reminder . . .

I have been reading so many books, I've finished Dr. Goldfinger's book and in the process of finding another one he wrote and then I've read Harvey Kushner's "When Bad Things Happen To Good People", A book of short-stories by Perri Klaus "Love and Medicine" (I think), and "Initiation Into Medical School" by Melvin Konner and I've been tutoring.

So I've been thinking a lot about death and how different people die (Oh yeah read "Stiff, the Curious Lives of Human Cadavers" by I can't remember her name sorry). I've been thinking about the value of death and why it seems to be such an upsetting thing. The way I see it we are all headed toward death some of us just get there faster than others. It isn't the faster than others that I fear it's the potential for pain or disability, being trapped in a body without being able to express my wishes or thoughts. That scares me. I know there have been one or two instances already when my number could've easily been called and perhaps it is that perspective that brought me to the realization that what I'm doing here at this moment in time is a comma in the sentence of my life. Perhaps Death is what gives life and time it's value. If we were immortal would we struggle with "med-school yes? family no?" decisions? No because we would have time to do everything we want but because we are all concious of our own inevitable death then we feel driven to "make the biggest bang with our measly buck". I have felt the weight of the blessings that are inherent in my family and life.

I have also been thinking about what makes an outstanding doctor. I think the best doctors are part healer, part teacher, and part Tinkerbell. The healer part goes with doing the best they can to make life liveable with the limited knowledge and resources at their disposal; seeing as how we are not given instruction and repair manuals in-utero doctors are doing a lot of guess-work best they can. A healer also knows the power of empathetic listening, humor, and human touch. A teacher tells you just enough to help keep you on the straight and narrow without contantly dwelling on the "what-ifs" it is a fine dance and the truly outstanding doctors know how to teach and give hope simultaneously in most instances. Tinkerbell because outstanding doctors have a certain "magic" or "mojo". I have doctors that I instantly start to perk up and feel better just by virtue that they are at my bedside and others who don't add anything extra but they don't take away, the truly terrible doctors are those that you feel worse for having been in their presence-I've been in the company of all three types. I only keep the positive and nuetral ones in my army of healers; the rest are given "Dear John" letters with instructions on where to forward my records. The truly outstanding doctors aren't really in possesion of any "magic" but they seem somehow to be surrounded by it and leave a little dust of hope and humor in their wake-kinda like Tinkerbell. All of my docs except my C/R Surgeon are men-I'm sure they'd love to know I just wrote that many of them are like Tinkerbell! More on this topic March 30th for National Doctors Day.

More later-

KJR

I feel kinda blue today. My Crohn's is doing well this week and I'm nearly over this respiratory stuff that has made me cranky but things seem to fall apart at the seams for the heck of it every now and again.

It started the Thursday before Spring Break (2 weeks ago today) when our one and only car died on us. I was at work when it happened and luckily an out-of-work mechanic friend at church was available to help tow and repair it very cheaply. The water pump, timing belt, idlers (?), the idler (?) casing, power steering belt, and some other belt needed replacing. This would've easily been close to $1500 in repairs at any shop for parts and labor but our dear friend was able to get discounted new and some used parts and saved us $1000. I cannot say how grateful I am for dear friends and the ministries they provide. That said, I learned a couple of new things about myself that I don't like very much over the two weeks while my car was an inpatient at the "hospital". I am very dependent on my worldly routine for my peace and comfort. Figuring out bus routes to campus and timing the one to work and having to wake up earlier really threw me for a loop and I was in a bit of a "funk". I realized I had let myself slip into this irrational sense of entitlement. It's like look God, I don't have credit card debt, I'm responsible for my school loans and medical bills, I drive a 1997 Neon (fully and completely mine all paid off) with 170,000 miles on it the least you can do is keep it working . Never mind that at 170,000 miles this was the only major repair ever needed and the parts replaced were far past their intended life spans. I was too cranky at having to wake up a half hour early to catch the bus in the cold :rolleyes: . My "Princess" stripes showed loud and clear. I'm embarrassed to even write this but it's the honest truth. I need to buckle down and work on a huge life-paradigm-shift where my peace and comfort are based on a relationship with my Heavenly Father and not on my car's ability to get me from point A to point B. Potentially pricey life-lesson bought at a premium.

I've worked my way back up to the front row in chemistry only to realize her shouting is so much louder this close to her. We started with a class of nearly 40 people and only 15 returned from Spring Break this week. I didn't do so hot on a take-home test not because I didn't get the answers right or understand what I was doing but because I understood it so well (Physics chapter-thanks Dr. Goldfinger and Bill Bryson)I skipped writing a couple of the steps to my problems and got partial or no credit for my work. She wanted all these little charts drawn and steps labeled and while the instructions on the test didn't say to include all that she told me that was just a "given" in her class. :banghead: Only 14 more class sessions and 7 labs - I am counting down.

Meanwhile DH's school has taken and cashed his financial aid check and allowed him to get 1.5 weeks into his current trimester only to say that he is "academically dismissed" because of attendance issues last semester related to my hospitalizations. They "allowed" him to "appeal" the decision but only gave him 5 business days to accumulate his documentation and then held the hearing last night without telling him or inviting him to come represent himself nor did they consult any of his previous professors who could vouch for his performance. He attends a private-for-profit institution and I don't even need to go into the details of the glaringly obvious ethical problems of his situation. The deans are not budging on their decision so we placed a call to the CEO of the company that runs the campuses who has now pulled the dean and the president of the KCMO campus into a discussion to figure out how they justified allowing him to enroll, cashed his federal aid and are now dismissing him. Needless to say if we are unable to mediate an acceptable solution all the documentation is being handed over to an attorney at church who relishes a good comsumer advocacy case. Have been puttering around the internet and have found that a class-action suit has been filed in the past against this institution both in Canada and domestically. The CEO is a nice man and he is digging into it already in just the last few hours because DH has started to receive calls from his campus from friends in different departments. You know what people,?!? Mess with me all you want but you mess with my sweetie and/or kiddo the gloves come off and I turn into a Mama Bear and will snatch you bald! I hate being pushy and/or litigious and would rather work it out amicably but if that can't be done then we'll figure out another way to work it out. His dean wants reassurance that my illness will no longer be a "distraction" to him in the future and they want a prognosis from my doctors . . . wouldn't we all! :rolleyes:

RANT RANT RANT RANT RANT

I'm going shopping this weekend and redecorating our bedroom with the tax return. I'm excited about that because since we've been married our bedroom (where so many fun things happen-nuff said) has never been "ours". DH moved into my place and so all my stuff has always been used which is really girlie (English Tea-Rose type decor) and so we are going to do a middle eastern/east indian type theme, you know so it looks like a guy lives there too . Lots of candles, red, orange, brown and black, gold accents, green, some purple - very exotic and rich looking I hope.

Please pray for us as we regain our bearings and plow through these latest set-backs.

More Later-KJR

Our family had a really good weekend. Friday night I went shopping with Mom for stuff to redecorate the bedroom with, Saturday was a huge egg hunt at church (4000 eggs!!) and Sunday was church and an afternoon with my husband all to myself. I love my step-son more than I could've comprehended a year ago, I often find myself padding half-asleep into his room throughout the night to make sure he's still covered up, to pray over his body, or just to watch the rise and fall of his chest as he breathes. I adore him, but to be honest I love an afternoon with my husband all to myself while he goes and plays at my parent's house and the neighbor kids he's befriended over there.

Our Easter sermon at church yesterday convicted me on so many different levels. The sermon was on the DNA of relationships and some of it was this pop-culture Oprah/Dr. Phil type stuff which I was suppose was for the benefit of the many visitors and un-churched who visited (we were packed to the walls I've never seen it so full with standing room only) but then he really got to the heart of the matter.

I have been working another member here (Victoria) who has become my coach, she says she's my parenting coach but I suspect really she's just the really cool big-sister I've never had. MomMD is so very awesome. She's helped me not only evaluate my parenting but in the course of beginning to explore that side of my life I've been forced to examine my world-view and my internal dialog of motivators in my life. I've recognized and identified in myself that I feel cheated and insecure. 90% of this goes back to my Crohn's disease. Cheated because I don't have the physical stamina I want and need (or think I need) and insecure because of the unpredictability of my disease and its flares. I hope when I write all this stuff some doctor, resident, or future doctor gains some insight into the emotional life of a chronically ill patient.

So PD moves along in his sermon and pulls out a brand-new spankin clean $100 bill from his pocket and asks who in the congregation would like $100, of course most people raise their hands. He then crumples it up and asks again who wants the $100 bill and of course people raise their hands. He asks one of the teens why they would want it because it's all crumpled up and the teen answers "Because it spends the same whether new or crumpled." PD then drops it on the floor and grinds it under the heel of his shoe and asks if anyone still wants it and of course people raise their hands and one lady answers when he asked why she would want it says "Because it still has value." BINGO-the light went on, I might've been crumpled, stepped on and have been dirtied but my Heavenly Father still loves me and finds value and purpose in me. My husband and parents feel the same way about me and I began to cry from the overwhelming feelings of love that washed over me. I also felt convicted of the worth and value of my patients, even the self-destructive, demanding, slow, or onery ones that so often make me want to pull out my hair. They've been stepped on and crumpled and I need to recognize the value of each one as I work on their cases.

I don't know if anyone else here had the experience of being picked up by their dad "sack of potatoes" style when they were little but that brought back that memory for me. On Saturday nights we would take baths, wash our hair and watch Hee-Haw, Different Strokes, and Silver Spoons then Mom and Dad would change the sheets on our bed and Daddy would carry us up stairs thrown over his shoulders while we laughed and protested about having to go to bed. How many times have I been guilty of protesting when God picks me up and throws me over his shoulder in an act of love for the weary and I've protested, "No not yet!!" "I've got stuff to do still!" "After the commercial" or the best one "Honest! I'm not tired! Let me down!" :rolleyes: . God knows I've been cheated, he knows my insecurities about my future I don't know if he will change my circumstance or if it would even be healthy for Him to do that. What I do know is that He provides comfort and rest if I seek it.

I feel loved, I feel tired, I'm beginning to feel whole.

I'm a work in progress not nearly finished- :goodvibes:

More Later-KJR

:grouphug: Open Letter to Doctors on National Doctor's Day 2005 :grouphug:

“General Secretary Gorbachev, if you seek peace, if you seek prosperity for the Soviet Union and Eastern Europe, if you seek liberalization: Come here to this gate! Mr. Gorbachev, open this gate! Mr. Gorbachev tear down this wall!”. These were the history making comments of President Ronald Reagan made June 12, 1987 in West Berlin at the Brandenburg Gate. The world was facing a crisis in reconciling totalitarian governments and their role in the free-markets of world superpowers and the capitalist economies they supported. President Reagan felt it was his duty to help free entire populations of the world so that they too would know freedom, prosperity, and the liberalization of their ambitions and life-purposes. Ronald Reagan believed in freedom for human-kind.

I was diagnosed with Crohn’s Disease at the tender age of eighteen (on my birthday no less). I have been through countless specialists and physicians to reach a time in my life where I have a team of caring and passionate doctors. My doctors want me to experience freedom and prosperity despite my illness. I read an excellent Reagan biography by political writer Dinesh D’Souza who clearly delineated the differences between a totalitarian and authoritarian government. A totalitarian government determines what you do for a living, where you live, how or if you worship and in essence permeates the “totality” of your life. An authoritarian government is the greedy regime of a despot. It may tax you into oblivian with no benefit, create a monopoly for the nation’s resources for it’s own use and generally can make living more difficult but ignores every other aspect of your existence and leaves you to your own devices in the personal choices of your life.

For many years Crohn’s Disease had taken a totalitarian role in my life. Crohn’s affected the quality of my worship, it determined where I went to college and when, it dictated the timing of my marriage, it has weighed on my decision where to live (close to my doctors’ offices), and has been the determining factor in every job I’ve held since I entered adult-hood. I felt crushed, crippled, and defeated for many years. I felt as if my life was no longer mine to live and that my destiny was no longer mine to determine.

I have had the blessings of several great doctors in my life, Dr. Allen, Dr. Kessler, Dr. O’Brien and Dr. Herman who have become Reagan-like doctors in my life. These are doctors who have helped educate me, manage my disease, and achieve a quality of life and work I had nearly given up on ever achieving for myself. They stood at the wall that Crohn’s Disease had built in my life, shook its gates and demanded my freedom. They collectively called for the tearing down of my walls physically, spiritually, and emotionally. My doctors are truly outstanding statesman in the world of disease, we have yet to completely overthrow the despot that is Crohn’s Disease but they have helped me negotiate a truce and reduced him to an authoritarian role in my life. Crohn’s may influence decisions in my life but now that my wall has been torn down and my own gate thrown open it doesn't determine them and I see a world again of opportunity, beauty, potential, and grace.

On National Doctor’s Day 2005, from the bottom of my heart I want to thank all the doctors who have made tremendous sacrifices of self, family, and finances to serve patients such as myself. You may not always see the obvious benefit of what you do or feel burnt out and believe that your advice and warnings falls on deaf ears, but please know that the work you do has the potential to help free people from their prisons of fear and defeat. Please know that you do not have to conquer, solve, or cure every disease that crosses your path. Teaching a patient how to manage their disease, putting disease in it’s proper place and helping them achieve a dignified end to their lives is something I pray will be richly rewarded in its own time.

Thank you doctors for helping me tear down my walls and throw open my gates, you are the statesman that influence lives and the world beyond measure.

With much prayer and blessings-KJR

Well I've started having severe stabbing pains after I eat pretty consistently the last few days and Dr. A has put me on some anti-spasmodic that's supposed to make my gut behave. I'm a little scared that disease is finding new vigor in my body but will do my best not to dwell on it. Of course the first thing I want to do is stick a camera in there or swallow liters of barium but he wisely is prescribing meds and taking a wait and see approach. I like that Dr. A doesn't cave to my nuerotic need to know every last detail of what my body is doing. I'm confident in his choices because as I've said before he has Crohn's himself and I don't think that he would put me at any risk he wouldn't assume for himself.

I haven't written in awhile about my classmates and thought I'd weigh in with something that was surreal and hilarious in the same breath. Since Spring Break many people haven't returned and from reading my prior post I think alot of people have dropped out that I never noticed. Meet-in-the-middle guy is no longer with us, most of the ditzy 19 yo are gone and cranky lady is no longer very cranky as we've all found comraderie in the wake of our professor's nueroses. Last night one of the hangers-on of the 19-21yo crowd is a very tiny Vietmanese girl (I say tiny because she's barely 5 foot tall and may weigh 95 pound dripping wet) approached me. This girl has been too busy flirting with boys in the class and finding ways to copy off everyone else's papers to speak two words to me until she graced me with her attention and presence last night. Our conversation went something like this:

VG: Do you like think getting 10 pairs of underwear for $40.00 is like a good deal?

Me: Pardon?

VG: I like found a sale and do you think like getting 10 pairs of underwear for $40.00 is a good deal?

Me: Ummm well I suppose it's not the cheapest underwear because you can get bargain bin underwear at Walmart for $1.99 or Victoria's Secret underwear for $15 or $20 or LaPerla for $80.00 a pair. It's not the cheapest price for underwear but by far not the most expensive. (I niavely thought this would be the end to a very strange and out of place conversation but I was wrong)

VG: Oh that's good because like Ambercrombie has this sale on underwear and it's like very very sexy so I think I'll get like three years worth of underwear.

Me: Uhhh yeah - good price for Ambercrombie anything, stock up all you want (me quietly wondering where the days went that I used to buy three years of very sexy expensive designer underwear in one pop ).

So before we continue with this story you must understand I'm working diligently with her friend (very serious, studious Vietmanese girl) determining the percentages of water in unknown hydrate crystal substances and their moles to try and indentify them so we can all just go home because nutty professor's bronchial tubes were giving her fits because of some guy's cologne. I'm bending over the calculator checking Phoung's work when I hear the screech of a lab stool being pulled across the floor. I cringe inwardly (and probably outwardly).

VG: So K, if you had to choose like between two guys who like were totally different and one like made you feel all happy inside but like the other one made you feel happy, angry, sad, passionate and that kinda thing, like who would choose?

Me: Just the happy feeling guy.

VG: Why? (worried troubled look passes across her face-I'm guessing that's the wrong answer)

Me: Ummmm . . . weeeelllll . . . You see I think life throws enough crap your way to make you feel a myraid of things and you don't need someone else to contribute to that, just one person who generally makes you happy to help navigate through it. Life creates enough drama I don't need anyone to add to that.

VG: (her breaking out in sobbing tears and stutterung her words-me horrified look-wishing to throw fire blanket over her as obviously I've said something very wrong). That's why he broke up with me! Wahhhhh! That's why he's going out with the boring girl!!!

Me: Oh hun! I'm so sorry.

VG: He's so mature and I looove drama I like to feel all kinds of things and he said he was tired of me and dumped me! I LOVE him! I want to have his babies . . .

Me: How old are you?

VG: 21 (wiping tears from eyes and cheeks)

Me: You'll out grow this-trust me.

Now people I'm only 28 but even I can see how I've become mother in this group, they look at me funny because I have wedding bands (they all want that) and I have a kiddo (some want that) and apparently I'm not so old that I'm cynical and kinda cool, but really . . . the price of underwear? :rolleyes: Does she not have a mom of her own, an aunt, anybody? I won't be able to look at her in class now without wondering if she's wearing granny panties or some $4 sexy Ambercrombie Fitch get-up - I want to take the Bunsen Burner and burn out the corneas of my eyes . The only consolation is that Phoung turns to me later and says "Ignore her it's that time of the month for her . . . " :rotfl: at which point I had to clean up the table giggling to myself and trying to remember if seven short years ago I was like that . . . :banghead:

More Later-KJR

HONOR'S CLASSES AND A VICARIOUS BRUSH WITH FAME

This week has gone well for the Crohn's. That medicine helped tremendously last week and I haven't taken it for the last 2 days and am doing fine. I was told to keep it on hand in case I have problems again. I'm not a fan of anti-spasmodics because they make me sleepy and dopey and 2 out of seven dwarves is to many for my taste! I will add it to my stash of pharmacological band-aids.

Chem class is goin well I've enjoyed the work on profiling and the molecular geometry - it was kind of fun. One of my classmates is selling his house and DH and I are trying to get all his VA paperwork together to see what kind of mortgage we'd qualify for. It's a really cool house.

Biology professor was helpful last night in helping me figure out what classes to move into next and gave me the names of some outstanding professors. Dr. B also wants me to consider the Honor's Program he's willing to write a LOR and mentioned a stipend that's available. I've been in the Honor's program before when I dropped out of highschool and started college early I enjoyed it but am thinking that the colloquim (sp?) class I'd have to take is during the day when I'm doing this little thing called a J-O-B that puts food in our stomachs, clothes on our back and lets us afford medical care. I'm going to look into it but I think my days of leisurely pursuing my education with flexibility are over. Tomorrow night I'm having a bunch of them over to study for the test and finish our group project. It will look like a UN summit, Irish, Liberian, Mexican, and Vietmanese we have almost every continent of the earth represented. Because my husband and I are in an inter-racial marriage it is important for me to have Kiddo see friendships with people of all color and socio-economic status. I hope it will make him a well-rounded adult later in life.

My brush with fame was with Ty Pennington of ABC's Extreme Home Makeover. I should say vicarious brush with fame . . . The show came to do a house in KC near where my sister lives and my dad went to go pick up my niece and take her to the job site. Ty came out to make the rounds, give hugs, shake hands, and sign autographs. My Dad put her on his shoulders and they stood towards the front hoping he'd come down to their end. She kept calling his name in that little mousey 5yo girl voice and he leaned over to shake her hand and she got REAL shy REAL fast. Ty made his way down the line and about when he got two people away she found her courage and voice again and yelled "Ty! Ty! I like your show Ty!" and he looked up from the autograph, winked at her and said "Hey! I like your voice!" which made everyone chuckle. I asked her later which hand he shook and she held up her left hand and I asked if she had washed it and she gravely shook her head "no", I asked if he was as handsome in person as on TV and this grin spread slowly across her face and she said "OH YEAH!" . . . :rotfl: I died laughing. Daddy did say however he looks much older in person than on TV.

That was my exciting week we are earnestly looking at our first home purchase, and I'm looking into the Honor's program and everyone is recovering from the loss of an hours sleep. But by and by we are all doing well . . .

More Later-KJR

PS: My US came back with no change to my cysts (fine with me) and DH's meningioma had no change and the radiologist described it as "benign" we are mightily relieved and happy, thank you for the many thoughts and prayers! :cloud9:

:ouch: MY CANCER, OTHER PEOPLE'S CANCER :ouch:

This week has been uneventful for my Crohn's, 3 weeks until I follow-up with Dr. A and I get to relay the good news to him in person (if he's not reading this already). He has several tough cases, many of them young people so I get a kick out of bringing him good news when he sees so much creepy stuff. We got into an indepth conversation once about why I left my last GI doctor during what turned out to be one of the worst flares in my history and I told him that particular doctor seemed exasperated whenever I called with a problem or complication as they were beginning to occur at least weekly. The straw that broke the camel's back was when I complained of a deep aching and swelling in my rt arm (the arm my PICC line was in) and was concerned about infection (fever of 100.3) and thrombosis. He told me I probably slept on it wrong and if it felt "a little swollen" then I might have superficial phlebitis and to use triple antibiotic on it. My fever was due to inflammatory process from my Crohn's flare. I hung up in tears knowing that wasn't true and unable to secure an order for a Doppler study. I wiped my tears, walked next door to the pharmacy bought a big tube of triple antibiotic and smeared it all over my arm knowing this wouldn't accomplish anything but make me and my workstation greasy. Dr. H our radiologist for the day visited the scheduling room and was giving out hugs until he saw my greasy arm and asked what in the hell (his exact words) was going on with my arm. I explained the situation to me and he went and retrieved a wheelchair and took me to the ultrasound department where they found not one but FIVE clots between my armpit and wrist. He called my mother to the room (she worked at the same clinic different suite that day) and sent me to the hospital for a direct admit, he called his personal GI doctor (Dr. A) and gave him report and said it was time for a regime change. Dr. H is almost like a grandfather to me and if he said enough was enough then that was good for me. I asked Dr. A if he was ever frustrated by my case and he admitted that he was several times but the difference between him and the other guy is that he had a better poker face - I would've never known had I not asked.

A good friend at work had breast cancer about five years ago and they successfully treated it and cleaned it up, I learned today that the reason she's moving so slow and has bottles of Advil and Tylenot in her lab coat is because it has suddenly reappered as some very vicious mets to her T and L spines. She is one of the most loving and compassionate US techs I know. I spent a couple summers running around with her sons who are a little younger than myself and other doctor's kids at work. It breaks my heart to see the pain that she is in and how suddenly it came up and reared it's ugly head.

My uncle is recovering from a proctolectomy (sp?) from last year and has lost urinary continence that has failed to correct itself and experiences bladder spasms that interrupt his one passion; fishing. I was down in Cassville, MO with my family helping him get settled into a house he just bought and clearing brush and painting a room for his soon-to-be grandson and the pain that registered in his face brought tears to my eyes on the way home. They got his early too . . .

My own cancer the last few weeks has been one of attitude. I have been frustrated and tired from a myraid of things, Chemistry professor, keeping the house in order, catching up laundry, we never seem to be home as commitments pile up on our weekends, DH's ex-wife with the latest call today telling us that even though she took off with her boyfriend/fiance/flavor of the week that the 17 yo son she left behind has "ran out of food". We have tried to track down the "kiddo" and the phone is disconnected and have been leaving desperate messages with all of his friends that we know phone numbers to. Anybody can breed and have kids but God forbid a felon gets a fishing license . . . what kind of craziness is this? So with the exception of the ex-wife fiasco I have realized that what has got me short-tempered and frustrated is a generalized feeling of busyness. My cancer is one of busyness. An inability to just say "No". We have weddings and graduations, and General Assembly with World Quiz, and trips down to help my uncle and I don't know of one weekend in the next two months where we are home with no commitments besides church services and Sunday School. It is causing me pain and fatigue. WE are also trying to buy a house and quite frankly that's not really fun like I thought it might be . . . it's up there with buying a car, jeans, and bathing suits - and if left to my own devices about such things would probably wear sweat pants, skinny dip and ride the bus if necessity didn't dictate otherwise. I realized how out of hand life had gotten for me when we stopped at a Conoco in Lamar, MO and on the women's restroom door was a flier advertising jobs available with a carnival, they provided shelter, laundry and bathing facilities and needed food vendor cart workers and ride operators and for a brief moment while sitting on the toilet I fantasized about running away from everything and becoming a "carney". OK, ladies not one of my finer moments and I'll even plead guilty to some immaturity but knowing I have an awesome husband and an amazing kiddo I washed my hands, bought my Coke and Cheetos and got into the car without pulling off one of the tabs with a phone number on it . . . :laughing: . It's official Fearlessphoenix needs to get her own busyness cancer under control and she won't be running away with the circus any time soon.

More Later
KJR

:rotfl: ) and ride the bus if necessity didn't dictate otherwise. I realized how out of hand life had gotten for me when we stopped at a Conoco in Lamar, MO and on the women's restroom door was a flier advertising jobs available with a carnival, they provided shelter, laundry and bathing facilities and needed food vendor cart workers and ride operators and for a brief moment while sitting on the toilet I fantasized about running away from everything and becoming a "carney". A summer filled with corndogs, funnel cakes, snowcones, side-show friends, ferris wheels and no commitments from one town to the next. OK, ladies not one of my finer moments and I'll even plead guilty to some immaturity but knowing I have an awesome husband and an amazing kiddo I washed my hands, bought my Coke and Cheetos and got into the car without pulling off one of the tabs with a phone number on it . . . :laughing: . It's official Fearlessphoenix needs to get her own busyness cancer under control and she won't be running away with the "carnies" any time soon.

More Later
KJR

Appendicitis, everyone and their mother has appendicitis and needs CT scans I have the fifth case in the last 36 hours just laid on my desk . . . if I didn't know better I'd say all of KC is suffering from RLQ pain :boggled:

Must get back to work and make HMOs tremble with fear (I wish :rolleyes: ) at the sound of my voice :banghead:

SMILES

My Crohn's is doing wonderfully and went to FP doc yesterday because I kept having small episodes of vertigo all last week every day during a certain time frame-not serious but incredibly annoying. Dr. K . . . where do I start . . . one of the reasons I adore him is his sense of humor. He came staggering into the exam room spun a circle and flopped himself on his little round stool with wheels-almost :wave:

FIGHTING MY ADDICTION . . .



I HAVE to do this . . . I will admit my timing bites as it's only a week and a half until finals :boggled: but if I go a month with no caffiene my husband has agreed to take me to dinner anywhere I want. Morton's of Chicago is calling my name where there are no prices on the menus (if you have to ask you shouldn't be there is the general presumption) I told him he better call and make the reservation because I'm taking him to the cleaners on this little wager!

:goodvibes: .

In ten years I've never had that "official" distinction. I was so excited I had to hug him. However I did have to account for my thirty pound weight gain . . . I tried to tell him it meant I was "thriving" he all but rolled his eyes at me and said I need to thrive a little less and take it off. So, I've cut caffiene and in the process all soda from my diet and after finals I'm buying a pedometer and plan on walking 1,000,000 steps by Labor Day. They say you should walk 10,000 steps or more a day for weight-loss so if I set up a goal of 1,000,000 steps by Labor Day I should make a healthy dent in the weight gain?!?

Just finished my Biology test think I did well except drew complete blank on "nueroglia" and feel a little stupid but nailed the sexual reproduction anatomy and immunology material that was 80% of the test. I did remember the rest of the nuero stuff but drew a blank on the two "nueroglia" questions.

I LOVE biology, it makes me happy. One of my ESL students wanted some cramming tutoring today before the test so I squeezed him in after the doctors appointment and he thanked me for my help but most importantly he said he looks at the world differently now . . . I love teaching. Mission Accomplished.

Saint Augustine said that to know yourself is to know God. Learning, knowing and revealing all the amazing intricacies of my body and others has definitely touched me in a profoundly spiritual way. I stand in church and sing all the praise songs and look at my church family around me and marvel at all that goes into the balance of them standing there and the respiration and the hearing and seeing and the smelling and am dumbfounded at the intricacies of everyone's bodies. Blows my mind . . . I haven't even scratched the surface.

Praise God, I've now been in official remission for two hours and 29 minutes . . . :rotfl: Count with me ladies!

More Later-Kristi

PS: Still Dr. A's Methotrexate Poster Child . . . 2 hours and 33 minutes . . . :rolleyes:

:goodvibes:

Three-hundred-eighty-four hours and 6 minutes in remission and I've definitely been making up for lost time lately.

I nailed my Chemistry final with 120% and pulled a high "B" in the class. 20 points shy of an "A". If I hadn't been in the hospital the first week for the RVT and had been able to do the lab I would've been fine. This is teaching me to continously strive for excellence instead of perfection. That is very hard for me to do as my personality is a "just-so" personality. I have to have certain stripes on my bed comforter lay a certain way and the pillow cases have to be facing a certain way, clothes are organized to a fault in the closet and shoes . . . well I won't even start on my method of organizing shoes. I can't help it, I'm a first born (read Kevin Leman's book on birth order-fascinating stuff . . .) and was raised by a reformed perfectionist mother and with the Crohn's it's my way of trying to force order into what had been a pretty chaotic world for the better part of the last decade of my life. Funny thing is life doesn't always stay neat and pretty and having come to that conclusion I'm working with God to shift my focus from being "perfect" to being truly excellent. Really striving for perfection is a proverbial slap in God's face. As a born-again Christian I've professed faith that he sent his son Jesus to cover all of my "inequity" and he sent him because He already knew of all my failures past, present, and future. Trying to be perfect is like saying "Look God, you really didn't need to make that sacrifice-I've got it all under control down here, just let me handle it." Sad thing is I often screw it up in my humaness and need a terrific measure of grace and so in pursuit of excellence I can acknowledge that I'm not perfect, don't have to be, and am free from the burden that perfection brings. So I have a "B" on my transcript for Chem 111 and I'm OK with that (I have to keep saying this in my head like some sort of SNL Stuart Smalley mantra "I'm OK-You're OK" :crossfingers:

More Later-Kristi

My last day at the clinic is today-I feel alternately tearful and so many of them end up writing notes on the pant legs of their scrubs by the time we're done. Dr. W always gets a good chuckle out of that one-one of the things he'd marvel at was that I could state the number of years, months, weeks, days and hours since my diagnosis, now I'm going to be able to tell the interns the years (God wiling), months, weeks, and days since my remission . . . One of my favorite interns Dr. P came in my room on rounds one Saturday morning and flipped on the lights and exclaimed "Hey! I thought they would give me a real patient!" it was instant "love" he had me suckered completely and I did nothing but brag on him to the attendings my entire stay-one of the funniest, neatest and smartest residents I'd ever met.

So I've been in remission now five hundred and fifty one hours and 41 minutes.

More Later-KJR

PS: Just recieved word that my step-daughter lost her baby-don't know the story behind the miscarriage yet-please keep her in your thoughts and prayers as she heals from many hurts and disappointments

743 hours - that's how long I've been in remission and so much has happened in the month since I've gained that official status. I feel a tremendous burden to not waste my time and sweat the small stuff and have realized that most all stuff is small stuff.

I hardly recognize myself when I am on my knees in prayer each morning and night I don't feel as if my prayers are hitting the ceiling - I feel a strong sense of purpose about what I'm doing and incresingly have faith that if I submit my complete and total will to God he will accomplish great things through me if I surrender the control. His timing is perfect, his will is perfect and I all need to do is trust. It has been difficult for me to trust because the most basic functions of my body that most people take for granted have been robbed from me and if I couldn't trust my very own body then how was I to trust a God that I couldn't see, or touch? Faith is the belief in things unseen and the larger part of faith is trust that there are unseen things at work in this world. One of the things I walked away from Dr. Goldstein's book knowing for certain is that God plays a cosmic game of hide-and-seek in this temporal world. He is everywhere in the pattern and order that I observe around me and the Christain faith in me has built a belief that even in my attempts to hide from truth and faith then He seeks me out of a desire for my love and worship.

Stower's Institute . . . where do I start? I LOVE this place, I have my hair cut and am running around in my scrubs and purple Crocs and loving it. The gym and locker rooms are like the bathrooms I've seen in luxery homes, they have a hotel, a gourmet chef a cafeteria more nicely appointed than most restaurants I frequent, I can "Lunch and Learn" on Fridays (I take a packed lunch and get an hour to hear a lecture on different topics given by the Post-Doctoral Fellows and some of the Primary Investigators) I'm invited into the labs when I'm through flipping the flies (that's a whole 'nuther post believe me) and ask questions and explore equipment I've only read about . . . I have lunch with the CEO next Wednesday and was asked what it is I enjoy eating . . . I LOVE my new job. I wake up at 4:30 am work out from 5 am - 6 am and report to work at 6:30 am and get off at 3 pm - it's a pretty sweet deal that I got to pick my own hours.

Well I gotta go for now and mail Drey her diapers . . .

More Later-Kristi

I've almost finished up the personal statement edits that a few of you have sent me and WOW what a neat bunch of women all of you are.

I'm at SIMR and still loving it, I look forward to going to work for the first time in years. I have to admit the first week felt like a combination of Bill Murray's Groundhog Day and the first day of high-school. I kept getting lost, could put things in my locker but then couldn't get them back out and tripped on what my co-workers have affectionately named "air pockets". I would be walking down the hall gawking at the posters and in the windows of the other labs and trip on something that didn't exsist. So I've quit walking around all starry-eyed and began paying attention to the cart of glassware in front of me and haven't tripped over anything real or imagined for the last 4 days. Some of the scientists are more interesting than others but they are all pretty friendly. I've learned that Science doesn't stop for national holidays or the birth of Baby Jesus but it does stop for donuts and bagels every Thursday morning. I was making a delivery to a lab my first Thursday and saw a mass migration of people, fell in line and followed thinking it was some sort of drill only to find myself in the cafeteria and in a line of people for donuts, fruit and bagels . . . that was pretty funny-the whole institute virtually shuts down for twenty minutes on Thursday morning for donuts. I've also learned in orientation that you don't store food in the Biohazard freezer (Yet again like licking fetal pigs who in the world does these things?) Also you are not-under any circumstances-to chill beer in the cold-rooms . . . that had to be someone with a "Y" chromosome.

My lady who I work with has cared for flies and been cooking their food longer than I've been alive . . . I feel niave not even knowing that people actually make careers out of this sort of thing. Our pump probe (which looks like a set of brass nipples

More Later-KJR

I went to see my oncologist yesterday and he confirmed that from his point of view that I was in excellent health, gave me a hug and told me to "stay away" as much as I like him I'm more than willing to comply!

Things have been hectic and my job while not terribly demanding or difficult is physically exhausting.

I have learned a lot about fruit flies, how to tell weak stock from good stock, thier life-cycles and general behavior. Last semester in school it was hammered into me to look at behaviors and phenotype traits from an evolutionary point of view and when I realized the only things that adult fruit flies do is breed and groom their wings I come to the conclusion that good wing hygiene is necessary for a quick get-away from danger in the natural world. I began thinking about how lately my prayer time and devotions daily haven't been terribly enriching like I've been "going through the motions" and it's been another thing to do and cross off my to-do list. I began thinking about how my prayer and devotions aren't so much for my enjoyment so much as they could be intended as self-preservation and something to draw on when things aren't so peachy-keen and rosey-a spiritually significant evolutionary exercise in grooming my own wings for future use. My prayer and devotions also aren't all about me so much as worship for my heavenly father and a paradigm shift might be needed to reorient myself in a spirit of gratitude and love.

Funny story-Star Wars fever has hit our family fast and hard and my elderly grandma came to visit for the last week. She suffers from RA and Osteoperosis and has pretty severe kyphosis of the T-spine. My 4 yo nephew hasn't seen her in two years and when he walked into my parent's house he stood his ground in the middle of the living room wide-eyed and slack jawed and walked over to her holding out his hand and shook it and said "Wow!!! You look just LIKE Yoda!!! I LOVE Yoda!!!" My sister was mortified but my grandma just he-hawed and told him that she liked Yoda too . . . Outta the mouth of babes. :rotfl:

My summer has been filled with community theatre, cook-outs and the usual and as always . . .

More Later-KJR

My boys are gone!!!! YEAAAA I have the house to myself while they are out doing out-doorsey boy things for the next three days - I'm walking around in my underwear eating ice cream for breakfast (and sometimes dinner) sleeping and taking up the whole bed to myself, watching what I want on TV when I want, read Harry Potter without interruption or feelings of guilt that I should be more sociable, talking on the phone with my sister for hours, taking bubble baths, and planning on going to the indie film theatre close by to watch all the artsy-fartsy documentaries (March of the Penguins and Mad Hot Ballroom to start with) that my little heart desires without listening to DH's snoring in the seat beside me and kiddo asking "Is it almost over?" . . .

I love my boys but I cherish having time to myself too - I haven't had the house all to myself since my wedding day a year and a half ago-it seems empty but I could get used to it - I have to admit though the quiet is a little unnerving and I've left TVs or radios going in almost every room to fill up the quiet . . . UMMMM that looks sad now that I've read that over a second time . . . Oh well . . . :rolleyes:

Boys are back in town and of course there is the laundry to catch up and the house is no longer spotless but I did end up missing them.

I am procrastinating and am supposed to be redoing my sister-in-law's resume but took a small pit-stop here. Some members of my church family are really struggling in their relationships and it pains me to see friendships being lost and harmed. I got to thinking about my own friends in high-school and those people who you always think you'll never lose track of and how differently all of our lives have ended up. My best friend is still living at home with his mother and his manic depression is just now being managed effectively. My first true-love boyfriend I found out committed suicide by hanging himself from a ceiling fan and was not compliant with his scizophrenia medication, another one of my friends assumed that since I had dropped out of high-school that I wouldn't want to come to the reunion and the one teacher who had a profound influence on me and the person I became has retired. I had been convinced that what you do in high-school really "makes or breaks" you but what I've since learned is that it isn't high-school that matters so much as maturity, a little luck, and common-sense. I see people here at work all the time with multiple degrees and brains so big they're liable to fall out of their ears but struggle in the most basic forms of conversation and friendship. Some of my co-workers thought it was a little odd that I just walked up to complete strangers and sat my lunch tray down with them and asked their name and which lab they were with. But it's not hard to figure out that all anyone really wants is a friend . . . :grouphug:

I'm still enjoying my work and an amazing blessing has befallen our family!!! My husband has finally landed a full-time job with benefits that are even better than my own - we paid cash for a second car recently and still looking for an affordable house.

I've been following the Katrina thread on here and don't know exactly what to make of all this. I don't know that there are enough shoulders to lay blame on although I have a few ideas of my own. Here in Missouri we worry about tornadoes and floods and seem to get along fine but here you still have a place to go . . . what really strikes me there is that there's NO PLACE TO GO. If I was single I'd be on Craig's list offering a room to a single female college student but now that I'm married and have a kiddo all my extra rooms and beds are spoken for. In my parents neighborhood they have one house with 19 people in it-I cannot begin to imagine sharing space with 19 people. I was also struck by the magnitude of the poverty - I had vague ideas about the poverty but nothing as concrete as those pictures. I feel ill when I think of those thugs with their assault rifles and guns shooting at innocent people and raping young women . . . there must be a special hell reserved for them somewhere. I think some people find it very easy to blame violence on poverty . . . poverty begets violence yada yada yada and I suppose it does but that belief and mentality gives no credit to those people who are dirt poor and still wake up and do right every morning and don't rape, maim, or kill-perhaps it is a miracle that they don't but I don't know that is the opinion I want to hold for humanity that while in poverty an absence of depravity constitutes a miracle . It's a disaster that I cannot begin to wrap my mind around and how in a country as wealthy as ours did we allow the situation to become what it became. :no:

The big legitimate question that is left after Katrina is "What now?" what do we do to better prepare because I think everybody can agree that preparedness was sorely lacking. I think that we have preparedness issues in our own lives. When I was very ill with my Crohn's disease my whole-life was lived in disaster-relief mode - picking up the mess from one crises while anticipating the next and I realized how complacent I became when I recieved a reminder call that I was overdue for routine lab-work. I've never missed a lab-draw until this last week when it never crossed my mind until I came home to an answering machine message. The more time and distance between my last "episode" and the here and now the easier it becomes to start forgetting that part of my life and move on. I don't need to be hyper-vigilant to the point of near paranoia any more but I do need to remain watchful and cognizant. I think that as time and distance begin to heal the wounds left by Katrina that a complacency will settle in much like post 9/11 . . . the only toe-hold a terrorist/Crohn's Disease needs is a little complacency.

I am disturbed by something else I've read that there have been comments made about lives being wasted in Iraq - Saddam admitted today to massive genocide involving the Kurds and that many of these people with their objections to the war would scream and holler bloody murder if ethnic cleansing happened within our own borders and no one was held accountable. If this war was about nothing else, WMD, Oil, etc. it was to answer for those lives lost and the genocide that happened at the hands of a maniacal dictator. It helped give those Kurds a voice from the mass graves . . .

I'm feeling blue and angry tonight - watched to much Dr. Phil and Oprah - need to go bury my nose in some chick-lit, take a shower and go to bed early - with a renewed gratitude for my shower, bed and books.

Sorry I haven't updated this diary lately. I have been consumed with work and family and enjoying my remission still a year later. My review came and went and the scientists were happy with my work quantity and quality and I got the highest rating possible and a nice raise. I think this may be the close of this diary as I've come to realize my fascination with science and medicine is purely at a layman's level and that there are people 100 more times gifted than me doing amazing work so I'm registered to take the LSAT in a few weeks and perhaps by reading my admissions essay cut and pasted below you will see where the last several months have led me. I love SIMR and had opportunity to learn much and even minister to a few quietly through friendship.

So here goes:
Langston Hughes asks the question “What happens to a dream deferred?” and wonders if it dries up like a raisin in the sun, festers like a sore and then runs, or stinks like rotten meat, perhaps it might crust and sugar over like a syrupy sweet. It is my experience that it is his nearly final conclusion that a dream deferred just sags like a heavy load. I assumed a new identity as a chronically ill patient ten years, six months and eight days ago that managed to turn my dreams into heavy loads that would not go away despite a quiet desperate internal plea that they would.

My new identity was handed to me on several eight by ten sheets of papers with odd pink circles photographed at infrequent intervals. It wasn’t the pink circles that changed my life it was the odd white ones made of scar tissue and the vivid red ones of active and gaping ulcers lining the better part of my colon. Those holes explained why walking from class to class was an enormous and exhausting effort for my young seventeen year-old self and why I had the pallor of a bed sheet in a Clorox commercial. The white scarring explained my inability to sit through any of my Honor’s level lectures without interruption involving a trip to the restroom. These pictures confirmed what had been suspected I had Crohn’s disease. Crohn’s disease is inflammation of the small bowel and colon. This results in severe abdominal cramping, anemia due to the ulceration, dehydration, malnutrition and total bodily fatigue. I had been told that if you don’t have your health you don’t have anything. That cliché is terribly wretched when you are left holding all of your dreams and plans in the palm of your hand then cruelly wake up one day and face the unyielding realization you may not have the physical means to achieve them.

Soon after I was diagnosed I read an essay in my Philosophy class by Albert Camus “The Myth of Sisyphus”. Sisyphus was condemned by the gods and forced to eternally roll a rock to the top of a great mountain where it would fall back on its own weight. The gods who had punished him had concluded that there is no worse punishment than futile and hopeless labor. The true tragedy is not the condemnation to the labor but the fact that Sisyphus is fully conscious of the futility surrounding his labor. The forced labor of Sisyphus is made all the more catastrophic because he completely realizes that his labor is a premeditated response to absurd conditions in his life that are way beyond the scope of his control.

I had developed a nightly ritual of counting the thirty plus pills required to maintain my health through the next day. Sisyphus in spirit sat next to me as I counted the sixteen Pentasa, four Bentyl, three Metronidazole, two Prednisone, two Axid, two Seldane, one multi-vitamin, one iron supplement, one folic acid tablet and countless Tylenol. Sisyphus would have understood the cruelty of this futile labor to control symptoms and the painful consciousness of knowing no amount of pill popping would ever cure my condition. Ten years ago this was the best that doctors had to offer me. They did their level best with what technology and pharmaceuticals could offer someone in my condition a decade ago.

I went through hospitalizations, treatments, procedures and surgeries to numerous to count in the ensuing decade. I had doctors that were good, bad, and indifferent. It was under the influence of my previous employer, a high-volume radiology practice, and my new-found gastroenterologist that I began to look at the medical field as a friend and not a nemesis. I felt a rabid loyalty towards “my doctors”. Doctors were my healers and my friends. I felt sick in the pit of my stomach when called into jury duty one winter morning and found one of them on trial for neglectful malpractice. It took everything I had to sit quietly in the jury box and be questioned about my ability to be fair and impartial. I felt an overwhelming protectiveness for this man who had dedicated his life to the healing arts. This was someone I had sent my husband and son to for care, care that they received in the most compassionate and gentle manner, care that was thorough and complete. I had to admit my inability to be impartial. My early debate and mock trial experiences that had brought me such great joy stirred my spirit as I longed to join the defense team and flow arguments to defend the reputation of this gentleman. The enormity of what lay at stake soaked in as I wondered what would become of his practice and reputation, how had this affected his home when the stress of trial weighed on his mind at the dinner table with his wife and children. When asked if anyone knew the defendant I tentatively raised my hand and when the attorney asked my name the doctor turned in his chair to see if I was friend or foe. He recognized me as the friend who often held the elevator door for him in our mad dash to our respective office suites and offered an apologetic smile.

I know it is not politically correct or popular to admit that you have a passion to defend physicians and their profession. I have personally been on the receiving end of care that could have been classified as neglectful or incompetent and am far from naive to the fact that malpractice can and does happen. I believe fervently that we are losing talent and innovation in the operating and exam rooms across the country to the gaping and greedy mouth of malpractice litigation. It is my concern that the very dear cost of such legal action when frivolous makes wonderfully gifted doctors skittish and newcomers reluctant and jaded. We need only to look at the stark statistics of Obstetric and Family Practice shortages to know that the cost of malpractice is resulting in a lack of fresh ideas and innovative care. When those rare but inevitable occasions of malpractice occur I want to be the counselor that helps them navigate all the impending professional minefields to reign in damages professionally, financially, and help salvage the confidence that they had held and felt when newly minted with their MD, DO, and DDS degrees. I want to help protect doctors in one of their darkest hours as a feeble thank-you for the healing they so doggedly pursue for me.

I often wondered what would have happened if Sisyphus had simply refused to roll the rock and stepped aside as it rolled down the side of the mountain and chose to continue on his journey over the peak. I was blessed with the opportunity to leave my rock precipitously perched on top of my mountain and continue on my journey. I was given the blissful news of clinical remission one year ago today. I have been slowly trekking down the opposite side of the mountain and gaining speed but am still saddled with “the heavy load that sags” of my dream deferred. I would be lying if I didn’t admit that occasionally I glance at the mountain for a quiet assurance that my Crohn’s rock has stayed where I parked it; the painful futility of my past struggle still fresh in my mind. Graduate school no longer looks insurmountable and my experience of touring the law school and peering through the windows of the courtroom being remodeled triggered a Pavlovian response as memories of mock trial competitions and South Kansas City Youth Court flooded my mind. The memories produced a visceral response as my heart began to race and my stomach experienced a thrilling flop. I knew with certainty that now was the time to bid my farewell to Sisyphus, lay my heavy dream-deferred load down and race to my future.



I appreciate the support, love and prayers that so many of you have provided me and the frienddships I have garnered during my journey. I have had the privilege of helping some of you during your own travels and have even met a a few in person. I'll continue to check in every now and again and wish the best for all of you!

God Bless-FearlessPhoenix

This is the letter sent out regarding the situation discussed in the hospital ethics thread:

ENJOY!

Dr. Y
Director of Medical Affairs
Kansas City X Hospital

Re: MRN# LXXX10XX049

February 19, 2007

Dear Dr. Y:

Good day! On the advice of Ms. K I have given this letter much thought and consideration and it has undergone numerous edits for both brevity and editorial commenting. I have prayerfully channeled my disappointment into what I hope is a constructive, objective and not destructive spirit. I appreciate the time given to my concerns and would welcome the opportunity to speak with someone in a position of leadership to help ensure that the level of compromised care that I received at Kansas City X Hospital on Monday, January 15, 2007 does not happen to another patient with grimmer results.

I am a thirty year-old female with a twelve year, four month history of Crohn’s Disease. In the last decade I have taken tremendous effort to not only understand my disease and educate myself anatomically, pharmacologically but even at a micro-biological level. No system is immune to careful scrutiny. I examine my gut, medications, treatment choices, doctors’ advice, and policies. It has been a challenge to find a medical team that remains unthreatened by my scrutiny and encourages an open, honest, educated discourse about my prognosis and treatment options but I have been very blessed to assemble one nonetheless. My primary medical team is as follows: Dr. K, DO, Primary Care Provider, Dr. A, MD, Gastrointestinal specialist (MAGIC-group), Dr. O, MD, Colorectal Surgeon, and Dr. M, MD, Hematologist/Oncologist. All of these doctors have earned my trust, compliance, and loyalty through patient, compassionate, intelligent, and persistent care over a number of years. They work well together and have what appears to be excellent communication with each other.

Tuesday, January 9, 2007 I presented to the Kansas City Hospital (KCH) ER in the late afternoon hoping to be re-hydrated. Having an over-active bowel, I knew that I could not maintain hydration and needed help with IV fluids and was experiencing some left lower quadrant (LLQ) pain. The ER staff ordered IV fluids and lab work. The lab work showed I had elevated liver enzymes and compromised renal function. The ER doctors made an admission decision late that night. The ER staff asked who normally handles my admissions and I told them that the MAGIC group handled my admissions. The ER doctor said, “No, that’s your specialist, who handles your admissions?” I have not been admitted since January of 2005 to SLHP or any other hospital and I was not aware that admissions were now done through the hospitalist or surgical services. I was confused and exhausted at 2 am on January 10, 2007 and did not think anything of the fact that Dr. CH was my admitting physician. I would comply with the process and talk to my GI group the next day when they rounded. As the week went on I had a CT scan, ileoscopy, and SBFT all ordered by another gastrointestinal group sharing GI service with MAGIC. None of these tests proved conclusive about the LLQ pain that I was experiencing and my PT/INR had become elevated. I asked numerous times if the stenosis in the distal ileum found during the ileoscopy was due to scar tissue or an inflammatory process. This information was critical to me when making a decision about continuing conservative medical therapy or surgical intervention. No doctor that week could or would tell me the answer or let me read the ileoscopy report for myself. Dr. J was the hospitalist rounding the morning of Saturday, January 13, 2007. Dr. J informed me that he was preparing to discharge me. I protested and said that I still had unanswered questions and wanted to postpone discharge until a member of MAGIC or Dr. C or his partner Dr. O could evaluate me and answer my questions. I did not feel ready for discharge and was concerned about my unmanaged PT/INR levels. I was fortunate that Dr. C rounded through my room that same Saturday and I was able to ask him several questions but still did not receive an answer about my ileoscopy report. Dr. C agreed that there was no harm in my staying until Monday morning (January 15, 2007) until someone from the MAGIC group could talk with me. My husband and I made a trip to the cafeteria for lunch and when we returned a half hour later Dr. J was again in my room to discuss discharge. He said that he had spoken with Dr. C while we were at lunch and that he (Dr. J) was concerned that my staying was a waste of resources and he was concerned about hospital reimbursement and a potentially large hospital bill I might receive. My husband and myself were very angry because we felt as if Dr. J had pursued his discharge agenda, circumventing our decision with Dr. C, despite my concerns of an unmanaged PT/INR and unresolved LLQ pain. Dr. J ignored the fact that Dr. C told us that there was no harm in my staying. We were very angry and told him that I have a very good attorney retained to help with reimbursement issues besides the fact that I not only have private primary insurance but also excellent secondary insurance. His attitude was very smug and arrogant; he made the comment “I know what this is all about” and when I forced the question “What do you think this is about?” he backed down and refused to answer. He said that he would not force a discharge and I asked him to leave my room. I was very upset by the whole situation. Shortly after that clumsy exchange, a Patient Advocate visited my room and wanted to discuss how I felt about my conversation with Dr. J. I asked the patient advocate why my admission was under the hospitalist system. The advocate explained to me that all ER admissions are through either the hospitalist or surgical services to maximize insurance reimbursement. I then asked who initiated this policy. The advocate stated hospital administration made those decisions. Sunday, January 14, 2007 a “case manager” for 7E brought a paper for me to sign that stated I was aware that my stay at that point might not be reimbursed by the insurance and I would be responsible for charges incurred. I refused to sign it and told her that I had already signed this paperwork upon admission and that I was confident in their ability to exact authorization from my insurance. If there were any future insurance problems let me know and I would contact my attorney for the purpose of reimbursement help.

Monday, January 15, 2007, Dr. H with MAGIC rounded very early in the morning. I was able to discuss several questions with him. Dr. H was able to find the answer that I had about my ileoscopy report and he was confident under present circumstances that I could be followed outpatient for my remaining concerns. During that bedside discussion, he helped me wade through many different choices and called for an official surgical consult. After Dr. H left and confident that discharge was the correct decision, I began to shower and dress. While in the shower I began to bleed from my stoma dark tarry blood with several large clotted pieces, it concerned me. I called for my nurse and both she and the medical student on surgical rotation came to the shower to see this. When the surgical team rounded I told them what had happened in the shower, pointed out my elevated PT/INR and the fact that the last time I had this type of bleed (late October or early November of 2002 – you can reference my previous records on file at KCH) that it led to a larger more massive bleed. The surgical service told me that it was superficial and probably originating from my known fistulous tract, since it stopped, I was best-followed outpatient. I pointed out to them that if I was bleeding from the peri-stomal fistulous tract that the blood would be bright red, not dark and certainly not clotted. I told them that the blood came from the stoma not the visible peri-stomal fistula at the 9’o clock position. I said that under these present circumstances I would be re-admitted for a GI bleed within 24-48 hours. They nodded their heads silently, walked out and signed off for discharge. Later that day another Patient Advocate came to my room to discuss the discharge planned for that afternoon and I told her that I was frightened and did not feel ready since the bleed happened. I shared my concern that the hospitalist service was forcing the hands of my specialists and that I was not confident that Dr. H was told about my bleeding since he had rounded that morning. I told her that if Dr. H or anyone in his group knew about the bleed that they would lobby for further observation. She informed me that hospitalists only move for discharge with the consent of all services assigned to a patient’s case. Noticeably, she never addressed whether or not anyone from MAGIC was informed about that morning’s bleed. The hospitalist (I forget her name but she was young and blonde – I am sure you will find her signature in my chart) arrived to review my discharge orders. I asked her “What do I do when I bleed again?” She told me that since I was holding my Warfarin dose for the evening that I would not be bleeding anymore. I explained to this hospitalist what I told surgical service earlier, that under near identical circumstances the small bleed was a foreshadowing of a more massive bleed to come. I asked her again “What do I do when I begin to bleed?” She told me that if it became “uncomfortable” to contact my GI doctor on call. Resigned that I had said everything I could I figured it was best if I left. I went home on Monday, January 15, 2007 at about 4:30 or 5:00pm that afternoon.

At home, I enjoyed the evening with my family and prepared a bland low-residue meal for us, held my Warfarin as instructed and went to bed. The next morning I called my PCP Dr. K about monitoring my PT/INR levels upon discharge and his nurse called to tell me to report to the outpatient lab at the office and orders would be waiting. I took my morning medication, ate breakfast, and noticed that the LLQ pain had returned. I emptied my ostomy bag before leaving home and noticed again, there were a few black tarry clots in the toilet. I hoped that it would stop just as it had the previous morning in my hospital room. I drove to the PCP’s office (at South campus of KCH) and while walking to the front door was incredibly short of breath with significant weakness in my legs and reasoned that nearly a week of bed-rest made me “soft”. While in the elevator, I became very dizzy and when I got to the fourth floor lab, I asked for a chair to complete my paperwork while sitting and felt increasingly weak. My blood was drawn and when I stood up from the chair I felt as if my legs would give out. I steadied myself and went to the restroom because I could feel that my ostomy bag was very full. I used the toilet where I emptied a bag full of the same clotted, black tarry blood and began to cry. I cleaned myself up, washed my face, and quit crying because I did not want my son to see me scared and upset. I returned to the lab asked someone to take my blood pressure or to get my PCP to look at me. The MA for my PCP came, attempted to get a BP on me, and was unsuccessful. Soon my PCP appeared, smiled, and then looked crestfallen and concerned. This made me feel like crying again because he has never looked at me with that expression. Dr. K knows and respects the fact that I do not want to be patronized or coddled. He and I had a short discussion about whether to send me downstairs to the ER at the KCH South campus or to call for transport to the Midtown campus where my team is and I knew that MAGIC was on GI rotation for that week and where we knew my colorectal surgeons were. We decided to transport back to the midtown campus and waited for the ambulance. I arrived at the KCH ER about 3:00 pm January 16, 2007 and saw one of the surgical residents. I made it VERY clear that I would refuse admission a second time under the hospitalist service. The surgical resident remembered me and said tongue-in-cheek “You said this would happen yesterday” and I quipped back at him “Yes, I told you exactly what would happen but I was two hours off, it was 22 hours not 24, my mistake”. Trust me; I would have loved to be completely wrong in that circumstance. I was alarmed to find that while I had a hemoglobin count of 14 (please verify this in my records) when discharged I was readmitted 22 hours later with a hemoglobin of 6.5. It required several units of whole blood product, FFP and a few days in MICU to raise my hemoglobin. The rest of my stay and surgery was uneventful.

I have since talked with Dr. A about this policy and he explained further that his group agreed to the admission policies under contract and that it is has helped facilitate a better quality of life for him and his partners. I am supportive and empathetic; I know that doctors have ridiculous demands placed on them. It became clear while speaking with Dr. A that hospitalist systems are used around the country quite successfully and can sometimes even streamline care making it more effective and efficient. My complaint originated as one of policy. I want it clarified that my complaint is one of poor communication and care on the part of the hospitalists at SLHP and the lack of care and communication resulted in a premature and inappropriate discharge that put me and my son (had I attempted to drive my car and passed out while driving) in harms way. There were very simple and elementary things that should have grabbed someone’s attention. I am sure any MS3 or MS4 would have been taught that you do not send a patient home with an elevated PT/INR and an established history of severe GI bleeds. It is also very simple to know that black clotted and tarry looking blood in a bowel movement indicates a bleed that is further “up” in the GI tract rather than some superficial irritation at a fistulous site. It should not require a patient with an undergraduate anatomy and biology education to state the obvious. It should never be ignored! I shudder to think of what happens to less educated or outspoken patients.

This has affected my family profoundly. My son is constantly (sometimes hourly) asking for reassurance about how I feel. My husband has grown increasingly protective of me and suspicious of physicians in general. Only time and patience will heal those frailties. In the meantime, I am left with the responsibility of defending my physicians to my husband and son and helping them rebuild trust. I want my complaint reviewed thoroughly and if I have reported any inaccuracies in this letter please let me know so that I can work on rebuilding my own faith in the hospitalist system at KCH. Their ability to communicate with specialists even under circumstances that do not support their treatment agendas needs careful review. I welcome the opportunity to visit in person with someone to help determine how to improve this communication. I would encourage Dr. J and the other KCH hospitalists to receive further training on listening to patients empathetically and carefully. Patients often know their bodies, limits, and realities of chronic disease better than they might. The importance of the recommendations of specialists involved in a case and reporting any new developments cannot be overstated. It is imperative in the current climate to ensure effective and efficient use of what are becoming increasingly scarce medical resources; it should never be done at the expense of prudent patient care. I welcome the opportunity to be a patient representative for any policy or ethics committees at KCH. I have worked with the Center For Practical Bioethics here in Kansas City, met with Sister F. PhD, taken numerous logic, philosophy, and ethics classes and workshops and have over 6 years of clinical experience and received mediation and arbitration certification from the Kansas City Human Relations Department. I am not interested in filing a malpractice suit despite having received advice to the contrary. I think that a malpractice suit would exact some very temporary justice or satisfaction but that opening a dialog serves to improve systems and communication for the long term and would benefit not just my care but also other patients’ care. I am committing my future career to defending doctors in an increasingly litigious society and do not want any part in contributing to it.

I have tried without success to meet with Mr. H, President, and CEO. I made a call February 9, 2007 at 3:27 pm naively requesting 20-30 minutes of his time. I wanted to discuss some concerns I have about my community hospital. J.J., VP of Cardiovascular Products, returned my call at 3:47 pm that same day. I explained to Ms. J that I wanted to meet with Mr. H. She informed me that Mr. H does not meet with patients. I asked her if he was out of town or if this was an arbitrary policy regardless of circumstance. She told me that he was not out of town but was sure I could understand that if Mr. H met with every patient who had a complaint or concern that it would “consume his day”. I was incredulous; that is not a confidence building statement, is there such a volume of unhappy patients that Mr. H could not even afford to give me 20-30 minutes of his day? I told her that I wanted to discuss my concerns quietly with someone who was in a position to effect change. I asked her if I spent my time and energy jumping through all the necessary hoops and was still not satisfied would Mr. H grant me an audience. She told me “not likely” and she has never known that to happen. It saddens me that a President and CEO of a community hospital is so far removed from patient care and concern that a person would have endless layers of bureaucracy to wade through without any chance of being heard by him. Against my better judgment, I have written this letter. I am adamant that I want to be a real human face and voice not some anonymous MRN with a Times New Roman Font-Size 12, seven paged letter.

I want to close and let you know what is right with the KCH system. There are gifted, talented, compassionate nurses throughout the midtown campus and especially in my experience on 7E. A.K. is an angel in a lab coat often at my bedside helping me problem-solve a difficult ostomy seal well after her normal working hours. She never fails to exude calm, confidence, gentleness, patience, and good humor. I have grown to love her immensely and was honored that she celebrated my wedding day with me and my family a few years back. I am confident that I can call her with any ostomy problem and she might be able to help me over the phone. On those rare occasions when I need some handholding and an objective eye, she never hesitates to see me outpatient. A.K. is everything that is good and right at KCH. When Nurse K retires, it will be a significant loss to the KCH system and Kansas City ostomates. JD on 7E has proven to be an exceptional nurse and I am pleased when he is teaching a student nurse and I encourage him to let students practice any new skill set on me. He is compassionate and does not coddle me. JD helps me to differentiate between pains managed medically, or when just a good walk up and down the halls will help. JD is cheerful and professional and is quick to hug and encourage. Those are skills and attitudes that no amount of salary can buy. I also had the pleasure of receiving excellent care from C, J, and C on 7E and they are beacons of hope in what could prove to be a discouraging time. The hospital is clean, well maintained and managed. I could not say those things about my experience in another larger Kansas City hospital system.

You have many excellent physicians serving at your hospital, The MAGIC group is a stellar example of when medicine surpasses a diagnostic, evidence-based science and becomes an intuitive fine art. Never in twelve years of my disease process have I found a group so consistent with their hope, good humor, intelligence, and skill. I have had other good GI doctors in the past, but was not confident with the competence of some of their partners. MAGIC far exceeds those expectations and it is a good day when any of them darken the doorway of my room or calls on my bedside phone. Dr. O is one of those fine, gifted surgeons who not only posses a persevering spirit, intelligence, and skill but also an excellent bedside manner. Dr. O and her partner, Dr. C have problem solved difficult situations and complications and helped me prevail.

I choose KCH because it is a teaching institution and having my case reviewed and taught to nursing students, medical students, interns, and residents gives some purpose to what might be an otherwise hopeless chronic disease process. I strongly believe in teaching hospitals and support that mission. It is important that physicians no matter their status as an intern delegated to scut work or a well-experienced attending maintain a teachable spirit. I appreciate the time and energy you have spent reviewing my complaint. I am anxious to speak with someone further about improving communication, avoiding pre-mature discharges in the future and what has changed or been improved after this disappointing experience.

Sincerely,


KJR

CC:
Dr. A - MAGIC
Dr. O - Colo-Rectal Surgeon
Dr. K - PCP
Mr. H, President and CEO, KCH
Ms K, Patient Advocacy Director - KCH

So the other shoe has dropped. I often wondered if one auto-immune disorder led to others and I'm thinking that they do . . . I am the proud owner of a Lupus (SLE) diagnosis. I have been unbelievably fatigued and felt as if every joint and muscle in my body is under attack and of course the customary "butterfly" rash after kidlet's football games in the sun. My lab work was textbook classic for inflammation and all of the other tests they ran (too numerous to remember I get copies of all of it today). SLE is kicking my butt and despite scoring a 164 on my latest LSAT I don't know if any more schooling is in my future when I can barely get myself out of bed everyday because of pain and fatigue. I'm not a quitter but this has me yelling "uncle". Sorry such a downer . . . .