Happy 2016 everyone! Another year, another adventure! Yes, on this road I like to call “The Road Less Traveled is often a better route” so why is that statement so profound? Because I’ve taken the road less traveled and it a slower pace where we can stop and smell the roses. We can listen to our bodies and not jump to conclusions.
I’m tired of being the complaining woman who shares her dismay with this or that on a blog with strangers. I don’t want to be the woman who sings of butterflies and “it’s all going to work out JUST FINE if you just believe” either. I’ve grown weary of both. Neither gets me anywhere and since I’m writing this, not for my own enjoyment because I’m not a writer. But because it’s a free blog, no one listens to me anyway when I speak, so why not write my random thoughts down so I can make sense of them…..not…I can’t make sense of nothing.
OK, in all seriousness, I’m writing this to share what it’s like having systemic lupus and a bile duct that likes to sludge up sometimes and in the last three years apparently it has because I’ve found myself really sick and losing weight. This after 42 years of mostly healthy cluelessness about how our bodies can decide to get sick and go haywire, and how I cope with all that comes with that. But apparently, in the space of about five minutes of writing this, I’ve once again become the complaining woman who is sharing her dismay, but with a twist this year! Learn to deal with it, find the positives, and live this life given to me with as much gusto and enthusiasm as I did the first 42 years of it. No one wants to hear a sad sack “sad sacking.” I’m much older now and thoughts come out of nowhere, profound ones. In the middle of the night which I feel is because I’m totally preoccupied with being sick. Versus when I was a young “thang” living out on the ranch the only diseases I knew of were the ones I was helping my parents treat the cattle and horses for and my sicknesses were limited to sore throats and broken arms. I now have illnesses with dirty sounding names like Common Bile Duct dilation, Sphinter of Oddi (that’s a diagnosis I’m not too sure about) Lupus (not dirty, just sounds like a worm or something), and we don’t really get to pick and choose our diseases. Not fair, just throw it in that pile there with the other things I say aren’t fair. As my mom used to say, “honey, nothing is fair in life, you just need to move around that and keep going.” Plus, I am thankful I do not have cancer. I had it once, melanoma but the great surgeons got it all and I’m SO thankful because I’ve watched too many dear relatives and friends fight cancer, and lose. In my own family all the women have had or have cancer. Out of five of us ladies, only one has been cancer free, but truth be known she did have the diagnosis but fought it and won, privately. My oldest sister is a two time breast cancer survivor, but is battling Padgetts Disease right now. My third sister died at 55 years of age of a quick cancer that spread to her brain. My mom died from COPD but had terminal melanoma at the time. In her early years she beat uterine cancer. Cancer is evil.
I’ve found that for the most part in my own seven year odyssey of illness that my biggest frustration isn’t the illnesses or the pain or the fear of dying that was unfounded, but rather the “professionals” who are charged with diagnosing me and treating me. Not all, but in my case, a large percentage.
I’m a firm believer that the words a physician tells you carry huge consequences or hope. They can make a mild situation into a fearful, stay awake at night, get your affairs in order situation or, they can explain it like it is, a problem that they’ll work with me on. Those good doctors sit and listen, pay attention (I like it when they pay attention), and speak the truth, that is, “they aren’t sure at this point however, they are going to research this particular symptom, talk to some specialists, and at our next visit they’ll have some answers. If they don’t find answers they are dedicated to helping me find someone who can.” You would think this is how it always goes for people but I’m here to say, no it doesn’t and if it doesn’t, no matter what, don’t jump to conclusions, you are a real person and it’s only speculation at this point. Wait until you get the tests, scans, proof.
Of course, coming in a close second in the frustration department is the “hospital gown” that hasn’t changed since I broke my arm in first grade YEARS ago and I assume weren’t new then either. Is it so we, the patient, can feel really stripped of everything, having no dignity, and asked to go parade the halls of the medical center, IV in tow trying to hold the back of our gowns together (which would fit my horse and hangs ridiculously tangled off, not on, my 95 lbs. of pure spunk like the white sheets covering Adele’s furniture in her video, “Hello”) Yes, it has served its purpose of being easily accessible for those stomach exams and IV opportunities, and its main purpose, to humiliate the 1 ounce of self esteem that remains in my body has been accomplished. Someday, someone is going to invent a NEW hospital gown that will be headline news. Whoever does I hope they win an award on one of the award shows or Tim Gunn from Project Runway shows up and says, “oh my! Your use of actual snaps and a drawstring is SO INNOVATIVE!”
Oh, I guess there’s a tie here folks, also in second place is….sitting upright in a hospital bed, early in the morning, hair sticking up everywhere, no makeup, in that stupid gown, when the hospital physician of the day does their rounds. I’ve learned that hospitals have physicians whom work just at the hospital as a team leader of sorts. Sitting there staring at each other he wins the “who’s more important” right off the bat. He’s dressed in a suit, seems in a hurry, acts important, and wears that stethoscope like it’s his binky. I’m being rude, I KNOW not all are like this but for whatever reason I’ve encountered the hospital doctor who is so overworked he’s got no time to ask someone why you’ve been admitted so he can at least tell you. I used to be unflappable, we are all created equal I felt, and the only difference isn’t the level of education or what we drive, but rather our “Common Sense Score” which sets stupid folks apart from people who aren’t so stupid. I’m not being mean, I should explain, I’m saying I could be considered stupid but stupid to me means, “oh this stupid pill bottle won’t open, oh this stupid remote isn’t working again” it really means nothing about class or education, it’s just a word I use when I’m upset with something, so it must be stupid. So, staring back at me is a man, who looks at the laptop and says, so you are very thin, it appears you’re having problems with diarrhea. No, I don’t have that. I’m having double over pain in upper abdomen and can’t keep anything down. Oh, ok, well we’re going to give you fluids and keep you comfortable. Any reason you’re not eating? This is where my “stupid” statement comes in, “please look at my stupid record in its entirety. I was 107 lbs, now I’m 90 lbs. I’m sick and please please do not give me that pain medication. It’s making me feel worse.”
So back on track here, the mere fact I’m half naked in a hospital where I don’t know anyone, with a personality extremely like the chipmunks (not the dancers) Chip and Dale. I say “I’m sorry!” for situations I shouldn’t be sorry for. Such as, if someone runs their cart into me at the grocery store I say, “Oh I’m so sorry” and pick my cart UP and move it over, “after you, oh no! after you!, oh not I couldn’t possibly go first even though I was here first, you go!” then they do. At the hospital I feel I’m putting everyone out, I won’t ring that call button unless I just can’t hold it any longer, then say “I’m so sorry” as the nurse enters my room. Until weeks later and I get the bill then I get mad at myself that I wouldn’t bother the nurses for anything, apparently I’m charged dearly for their care. I’m not sure they get that money though.
I can’t tell you the number of times I’ve sat in a hospital room alone, staring out that window, wondering why I’m in the hospital again, knowing for the most part why, but why no one is really doing anything such as discussing with me a plan, asking if I have any questions which I do but I’m too dang tired of asking the same questions to yet another doctor (apparently they rotate in and out) at the very same hospital but for whatever reason they’ve not had a chance to read my file and see this (abdominal pain) is getting alarmingly more frequent and more harsh. Why I see different doctors everyday, why each one has a different diagnosis or “take” on my illness. Why they can’t tell me why my bile duct is dilated, or my GI system is going haywire, or I can’t eat anything for a month, or why I’m so very sick, they don’t answer or maybe give me hope a specialist will be in to explain. Because I don’t like to be sick and not know why other than “you have systemic lupus and a bile duct problem we don’t know why. But we see you had a couple of bouts of pancreatitis in the past, do you drink?”
In the meantime nurses (whom, by the way, are hard workers and are run ragged) make their way in and out of my room, changing my fluids, shooting me up through my IV, asking if I would like some ice, and asking what number my pain is. Pain is not a number. I know this is used to help them assess whether they need to drug you up good, drug you up somewhat, or give you a Tylenol and call it good. But, when a person is in extreme pain, the idea of calling out a number is silly to them, because looking at the pain chart with the faces on it, and trying to answer correctly is a joke. Adding to the joke is the narcotic pain reliever you’ve been given which I’m not complaining about, of course I wouldn’t, it’s given me great relief, but at a cost (I’ll explain later). How about take a look at the grimace on my face, the fact I can’t get out of bed or sit up, I keep asking for help to sit up. That asking me what number pain I’m in is akin to asking me if I like to play tennis on the weekends…it does not compute… I’m in pain and I can’t answer questions. NO! I appreciate you all very much and understand you’ve got a floor full of people calling out, “I need my pain Meds!” If I were a nurse I would probably grow insensitive to the sheer numbers of patients not asking for a soda, crackers, a warm blanket or maybe new footies, but from what I can tell from the little room and bed I’m in, the nurses are being summoned for pain Meds…..constantly. Well, it IS a hospital.
Give me flash cards because sometimes I’m too ill to answer this question. See I thought 7 was a good indication of “I’m really in pain and yes, I do need relief” but I found out that number 5 is the number for that. If so, the number 10 must mean you are dying so therefore the picture should be a person frowning with a sad face and a tear. That chart is just too confusing. The number 5 on that chart is the face I make when I discover all the crackers have been eaten in the pantry. However the number 7 is the face I make when my bile duct and pancreas are inflamed, causing severe upper abdominal pain and vomiting. I’m sitting up and leaning forward because that’s the best position for any kind of relief. There HAS to be a better rating system. I’ve no solution for that, and that’s not like me. If I have a complaint I usually offer a solution. I’ve got nothing. My own interpretation of a multi-round faced pain number chart isn’t, in my own humble opinion, a very good nor accurate way of gauging a patient’s medical situation. I think asking what number you are in then leaving the room really doesn’t give them nor the physician in charge for the day the information they need to adequately determine if I’m getting better or worse. “Well things are looking up! yesterday at this time you were a 7, this morning you dropped to a 4, by noon you were a 6 & 1/2 but now you are a 5! You’re doing great!” Actually, my science class way back in high school taught us about variables, and how circumstances can always change outcomes. So don’t just assume when my pain number plummeted down to 4 (which by the way was 20 minutes after IV pain medication) is an accurate measure of my health status and whether my GI system or whatever else is going on is indeed better. Pain is an indicator that something is wrong. Pain that is numbed with an IV narcotic after being admitted is an indicator that whatever is wrong has either been synthetically altered to not feel it, thus dropping that number OR has gone up due to trouble brewing in the body and a blood test, maybe a scan, is in order. Because my experience has been that the “what number would you say your pain is right now” isn’t just used to keep us comfortable with pain medication. It’s also used to determine if we are healing, feeling better, necessitating a change in diet, and in preparations to kick us out.
The cruel irony of the pain chart and the pain that comes with it is I’ve started this life out allergic to most pain meds and currently I can’t take 99.9% of the narcotics needed to keep me comfortable during an attack. When I do find one that doesn’t make me swell up, have an anxiety reaction, break out in hives or just make my condition worse, I pray my body doesn’t turn it away too. My GI problem and pain medications do NOT get along. They can make my situation worse and if they (nurses) don’t read my chart and make the mistake of trying to give me a high powered pain pill, then not hear my pleading that I absolutely can’t take those pills, I’m in for a nightmare.
OK, back to 2016, hospitals, doctors and complaining. The few times I’ve had the pleasure of a physician actually listening to me, looking me in the eye, writing things down, ordering blood tests, not rushing me along, not giving me gloomy statistics, then forgetting about me has been nice. But it’s been rare. I’ve been wondering, is it because medical school costs too much so there is a shortage of doctors? I’ve always had such great experiences in the past when I had a C section or my gall bladder out. Or, are they so overworked they’ve lost the passion to heal? Or, they forget the part about “do no harm?” I’m just at a lost that in this day and age, so many mistakes can be made, so many important chart notes overlooked, so many physicians can diagnose you without even touching you or looking at your history. How they can rush you through a consultation, sending you home crying, with absolutely no answers or hope. That many diagnosis you’ve received before have been proven you don’t have, and at which time and time again has landed you back in the hospital due to complications from what you really DO have but wasn’t treated for because they were sure you had whatever it was they were writing a script for. I’ve had my clothes back on, drugged out of my mind, signing my ER discharge papers stating I’ve been diagnosed with diverticulitis and to take these meds when I get home twice now when the doctor has reappeared stating we are admitting you, your lipase is sky high, you’ve got pancreatitis. Twice, almost out the door. and on my merry way home with lipase numbers in the 1,000’s.
I am sad to say, and this is scary, because I’ve heard from so many others in the same boat, that recently the physicians I’ve had to see seem uncaring, rude, and 9 times out of ten WRONG. I put my life in their hands, and it’s been Google, fellow suffers, my own intuition, and one or two good doctors and nurses who I’ve accidently ended up with that have observed me and don’t buy the diverticulitis diagnosis, probably because no scans were ordered or something. I just know I owe those professionals who DID watch and listen my sincere appreciation.
Because of these folks, I’ve begun my road to maybe, possibly, some help? They might be able to figure things out, give me hope, be truthful, and not pump me full of drugs without telling me why. I’m a human being, not a Recessea Ann doll. I have ears, a brain, intuition and I’m laying right here, I can hear you.
I make it sound like I see a new or different doctor every week. No, I had the same Internist for 22 years and the fool retired, no he’s not a fool but I had NO idea the state of the healthcare industry until I had to go find a new Internist. During my worse year yet with my illnesses.
In the last six months I’ve been in the hospital a few times, with the same thing. I’ve had CT scans, showing real problems, I’ve had two or three doctors interpret the scans differently. None agreeing. I finally stumble (I prefer to call it divine intervention) upon the specialist I need who I respect and I will listen to. So, I DO listen to the specialist who’s only specialty is what I have, and not the other two doctors I saw while in the hospital and you’re on their rounds list. Because, after seeing you they will visit the next patient who is in for a herniated disc, wow, to be a physician and know so many different ailments! Not to mention mine is one of those very different diseases (systemic lupus) coupled with a nasty GI issue now. Should I just be quiet and be glad someone is seeing me for a couple of minutes and telling me that my scan looked great! Or, should I listen to my body that is weak, won’t take food in, keeps me in the bathroom most of the time, while I’m losing weight and doubled over? Who tells me my scans look fine! You’ve probably got gastritis and we’ll know more in a week once your blood tests come back.
I do the latter, thank goodness, and an accurate assessment is made of me from a source outside of the hospital I’m currently in, which by the way, their doctor informed me NOT to seek a second opinion from Hospital #2 (where specialist is) because they are no better than they are (Hospital #1). Really? We recruiting patients now?
Intuition is a powerful thing we know our bodies. I knew I wasn’t fine. Now in the good hands of the specialist I trust who doesn’t waste time on what shoulda’, coulda’, been done but rather gets to work helping me. My mood rises, I’m no longer getting my affairs in order, and hope returns and the will to fight. What a relief. Just KNOWING what might be going on is a resolution in itself. Just knowing I could be my own worst enemy is hard to take but hearing the truth begins the healing process.
I will say, there are many very good doctors, many who are compassionate even though their work day is packed so full. Physicians who became a doctor to help others, they work hard and heal many. When they lose a patient it’s a very personal thing to them . I know that takes a pretty special person to dedicate their lives to helping others as with most everything else in life, it just takes a few bad eggs to spoil the whole hen house. I have a feeling that isn’t the way that analogy is suppose to go, but I hope you know what I mean. That some of us find it easier to pick out the bad eggs and rage on than to pick out the good eggs and enjoy.
The doctors and nurses I’ve witnessed from Hospice who’ve help my brother in law as he struggles pulmonary fibrosis, these people are saints and their compassion and knowledge knows no boundaries. I marvel at their ability to balance extremely good care with their feelings and compassion for the person they obviously care about. I know it’s a whole different group of professionals but I also know they started somewhere I know my brother in law didn’t always have this horrible disease and has had his share of clueless, rude, doctors. It is sad that it takes an end of life situation for a patient to be heard, receive the the care they need to prolong the inevitable in a way that gives them the ability to be in control of their choices and not kicked around like a Guiana pig And that they are treated with DIGNITY . Something every patient deserves
And regarding nurses, what can I say?! They’re on the front lines of healing and caring. Taking orders from the doctor then listening to the patient complain. Yet they keep on keeping on to them I will always be indebted to their helpful, optimistic care. For the very few who are rude, lack empathy and don’t answer their patient call button when you can hear them in the hallway talking about hiking the weekend before and how beautiful it was but they really need new tennis shoes. Go find a different profession because it won’t be long before your apathy causes a big problem for a patient and you’ll lose the job you obviously don’t like. The nurse that finally picked up your slack and found me throwing up with no way to grab a trash can, she was my hero and I’m so very sorry she had to be the one who found me that way because an hour earlier I’d hit my call button twice and asked for nausea meds.
I really want to get better but I’m learning just because someone had a white lab coat on with their name embroidered on it and a stethoscope around their neck not a doctor does it make , and that’s scary. However, I’ve learned as well in this most recent journey that, that white lab coat was EARNED by years of schooling, residency, sleepless hours, and a passion to seek the truth and to HEAL.
In closing, as I run through the maze of healthcare while being ill, I’m also witnessing the final days of another close family member. It’s surreal. Some days I say, “Is this it? You get sick, fight for your life literally, for years, finally get your illness figured out and under control but the time clock has run dangerously low, you’ve entered the golden years and then you get really sick and hospice is called in, then you spend your final day with compassionate people.” I say, if that is truly it, then it’s worth the fight because those compassionate caretakers make a person’s quality of life mean something. They help you have dignity, they don’t make you beg to be heard. They listen then act. Helping you. I know not all of us will leave this world with the help of Hospice, but it certainly has made me take a long and hard look at how the healthcare system and those in charge can make our lives dignified during our illnesses, or can make our lives a living nightmare.
Finally, my solution….. make sure that when I’m in the hospital or at the doctor’s office, I find that one nurse, receptionist, doctor that loves their job and does care or find another clinic. Because you can get better if treated better, bottom line.