Unknown Primary

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    Georgina Drake

    How to Live Life With an Undiagnosed Chronic Illness

    Living with any sort of illness can be difficult, but when doctors don’t know what’s wrong or how to help life can seem almost impossible. When I was undiagnosed and bedridden for three years, I vowed to myself that if I ever found out how to make such a dark and difficult time better I would shout it from the rooftops. Not literally, but I would do my absolute best to get the message out there to people who are struggling in the same way. So, these are my tips for living with an undiagnosed illness to feel better physically and mentally. As well as everything I wish I knew. Firstly, I want you to know that you don’t necessarily need a diagnosis to get better. If all of the medical tests are coming back negative, but you are really struggling, you can ask to be treated on a symptom basis until they find out what’s wrong. This is not an ideal way to treat a patient, which is why doctors do not typically offer such treatment but, if they reach a point where they do not know what is wrong– or even say that nothing is wrong, you can ask for your symptom(s) to be treated in the meantime. There are medications for almost everything, so as long as you are clear about how this is affecting your quality of life your doctor can work with you to find something that helps for the time being. The next thing I want you to know is that just because all of the tests have come back negative so far, it does not mean there is nothing wrong. There are thousands and thousands of medical tests out there, as well as those that haven’t been invented yet, so even if you had all of them and they all came back negative, it does not mean nothing is wrong. If you have had five tests, for example, and your doctor says nothing is wrong, I want you to know that what he really means is that you simply do not have one of those five things he tested for. There is no way he can know or say that nothing is truly wrong. Following this, my next tip is that you do not need to know what is wrong to tell people you are ill. I used to make myself even more sick “faking being well” and making excuses for why I could not do the things that everybody else could. It is absolutely OK to tell people that you are not well if you need to. This one sounds quite strange unless you have personally been in the situation, so here are a few examples of the wording you could use: It is OK to say, “I’m sorry, I’m not well at the moment so I can’t do that,” or “I wish I could, but I’ve been quite ill lately.” You can say these things to whoever you need to, whenever you need to, and it is completely up to you whether you expand on it or not. The next one is a tough one and it is that this can be the darkest and hardest time you will ever have with your health for so many reasons. An undiagnosed illness can be difficult to talk about, difficult to treat and difficult for even you to understand, let alone other people. However, with this supposedly being rock bottom, things really can only get better from here. In terms of your physical health — persevere at the doctors as much as you are able to, there are so many tests that they can run, places they can refer you to and medications you can try in the meantime if you advocate for yourself. Lastly, in terms of mental health, I want you to know that whatever you are going through, I believe you. No matter how many people have told you there is nothing wrong or it is all in your head, I believe you and I never want you to doubt yourself either. You know yourself best and you know when something is wrong, even if doctors cannot give it a name. I also want you to know that there is hope, even if you cannot see it. Things can get better, even if you do not know how or when and even if only a little bit. Keep hanging in there.

    Krys Wilkes
    Krys Wilkes @krysw

    Why I Believe Racial Bias in Medicine Almost Killed My Baby

    My 9-month-old son was admitted to the emergency department last May following what was described as, “seizure or stroke-like activity.” He had hemiparesis on the left side of his body, and his eyes and head were also deviated left — symptoms we had never experienced before with him, despite his developmental delays. At the time I worked in healthcare operations and had often frequented that hospital on business. It was in an affluent suburb and had a great reputation. I also had a good working relationship with the medical director of the entire hospital system, so I felt assured I was in good hands. My son’s ER visit began with a physician, who was cold and unfriendly, asking me questions that eluded to whether my child was being neglected or endangered. I assumed she was conducting standard child abuse screening, so I wasn’t concerned with being questioned. I explained to her that my son was currently under the care of a neurologist, as well as receiving physical therapy for his developmental delays. I also let her know he’d had eye surgery a few weeks prior. The hospital staff proceeded to medicate my son with drugs, including anti-seizure medication. They performed a CT scan of his brain because the physician wanted to check for injuries, but it didn’t reveal anything. After a couple of hours in the emergency room, my son was still heavily sedated. However, the ER doctor, who never even returned to the room to give us an update, told the nurse to send us home. I asked whether or not that was appropriate, considering my son was not awake and unresponsive. She said it was a normal side effect of the medication and it would wear off in a few hours. Against my better judgment, I took my son home. I trusted the hospital staff and their judgment over my own instincts. My son finally woke up three hours later, only this time his entire body was flaccid, he had spiked a high fever, his eyes were rolling into the back of his head, he was barely breathing and unresponsive. I called 911 and an emergency ambulance rushed us back to the exact same hospital, just four hours after being discharged. This time my son was admitted to the Pediatric Intensive Care Unit where he remained for the next four days. While in the PICU a new physician ordered blood tests, a 24-hour EEG and administered intravenous medications, including antibiotics and more anti-seizure drugs. My son was placed in isolation and also had a spinal tap to check for meningitis or other infections because of his high fever that lasted for nearly three days. The accommodating PICU nurse even helped to facilitate a Red Cross flight for my husband, who was deployed 8,000 miles away, so he could come home and be with our son. I have worked in healthcare, including participating in multiple Joint Commission ambulatory healthcare reaccreditation surveys and coaching my own staff on policies, protocols and procedures in accordance with national Joint Commission standards. I know what I experienced earlier that day in the ER with my son was more than inadequate care. The doctor was curt, dismissive and her implicit racial bias influenced her decision to prematurely discharge my son. It could have killed him. At the very least, the hospital staffers working in the ER should have continued to monitor my son for seizures, ensure that his neurological status was stable and that his observations were within normal limits for his age and condition. Sending a 9-month-old baby home who is still heavily sedated, following “seizure or stroke-like activity” is grossly negligent. Sadly, there is mounting evidence of implicit racial bias and discrimination in health care, even in pediatrics. Implicit bias can unintentionally influence behavior, such as perceptions about patients, decisions about patient management and adherence to treatment recommendations. Dr. Tiffani Johnson recently studied implicit bias against black children in a large pediatric Emergency Department in Pennsylvania, and the results were astounding. Dr. Johnson’s research found that 91 percent of participants had bias against black children. Furthermore, pediatric residents had similar implicit biases as resident physicians from other specialties, such as family medicine. What this means is that minority children are vulnerable to implicit racial bias from their healthcare providers, which can impact disparities in pediatric healthcare. Physicians and parents need to be aware of these findings. Don’t be afraid to speak up, advocate for your child and always trust your gut. I also strongly urge institutions to look at successful methods of reducing racial bias in medical decision making, starting with education and awareness.

    My Baby Was Diagnosed With Failure to Thrive

    My baby was labeled: failure to thrive. Whether your baby was diagnosed at 2 weeks old or 5 months old, the label can be scary, overwhelming and simply terrible. Perhaps you are nursing and your milk is not doing what it’s supposed to do. Maybe your baby is taking it in but the milk is not filling him. Or maybe your baby simply will not drink the milk for no apparent reason. That is where it all began with us. After months of talk of being admitted to the hospital, it finally happened. We had to admit our sweet, little girl for “failure to thrive” at 7 months old. Even in-utero she had periods of growth and periods of weight loss; periods of eating and periods of eating next to nothing. My sweet girl possibly has something terribly concerning going on with her and yet we have no idea what it could be. After hooking her up to IVs for dehydration, we sat and waited. And waited. When the doctor finally came by, he only came to tell us we would be seeing a specialist soon. But instead we waited some more. After finally seeing specialist after specialist, getting blood test after blood test, and having an intrusive Upper GI test, the answer was clear: it was inconclusive. Yet with more medication, she was eating once again and we were able to go home. The fear of the unknown is overwhelming. Before every feed I question whether or not she will take the bottle. After every feed I add on the ounces she took to my daily mental counting, hoping and praying she reaches the right amount. Because if she doesn’t? Three days in a row and she is back to losing the small amount of precious weight she did gain. On top of this, I am constantly questioning, googling and ranting about it to anyone who will listen. What could my little 7-month-old be sick with? What could possibly be wrong? And why don’t the doctors and specialists know? Failure to thrive. Failure. My sweet girl is not a failure. She is stronger and braver than I could ever imagine a little girl to be. A few months later and nothing has changed.   Out of medication options we are down to using a tube to feed her — a piece of plastic on her face, into her nose, down into her belly giving her food that she otherwise has no interest in. The diagnosis? Still nothing. At 11 months old, our sweet girl continues to stay small, very small. And here I am. Still waiting. Waiting daily for the doctor’s call for next steps. Waiting for the next appointment with the naturopath, or the GI specialist, or the pediatrician. Waiting for the next weight check, hoping and praying she gained enough that week. Constantly I am waiting. Waiting obsessively. The future is unknown for my littlest. The future looks scary at times, worrisome at best. The unknown is so bold and brutal. Yet because of my faith, I am reminded of the One who does know. The One who is above the brutality of the unknown and the fear of the future. The One who has it in His hands and holds it close to His heart. The One I can trust and love and lean on and surrender to, even now. The One who has a love for my sweet Maia larger than even myself, her own mama, knows. Oh, what peace. Peace in the waiting. Peace in the constant unknown. “Maia” means “close to God.” May I be reminded of the value and beauty of this again and again through my sweet, tiny Maia. Follow this journey at A Beautiful Alarm. A version of this post appeared on Her View From Home We want to hear your story. Become a Mighty contributor here .

    Samantha Moss

    The Unknowns in an Unknown Disease

    Life isn’t always straight forward. It’s not really a newsflash to say that, I know, but as I lay in pain with two legs that had major surgery eight weeks apart, facing a future filled with so many unknown elements, all I could think is that life just isn’t straight forward. I have been told recently my bone biopsy revealed “dead bone.” That’s it. No explanation, just a sigh of relief from my surgeon that we put a rod up the leg as it was definitely going to break. I was relieved too, but I was also left feeling more annoyed at my body, frustrated that it refused to give up enough information to help my medical team find a definite, specific diagnosis. It teases us with snippets of information and then spectacularly, physically, breaks down in a way we didn’t see coming. My endocrinologist keeps saying, “Good news, it’s not such and such,” whenever a test comes back negative. Last time she said that I explained to her that while it is good I don’t have mastocystosis, blood cancer or some other such thing they suspected, being told I have a rare disease, something that has not yet been given a name, is probably a genetic deformity, and is an idiopathic disease with an unknown prognosis, is actually worse than being told I have something known by the medical profession. She asked me why is that worse. She wanted to understand why I would want to know that I have a known disease that could be terminal or that has no treatment. My answer? I need answers. I need to know exactly what I’m dealing with. I want to know the prognosis. My doctors have no idea the path my disease will take, although they know it’s progressive in nature. We have already been surprised by a scary pathological femur fracture and now my bone marrow is being damaged. I am being constantly patched up and enduring difficult surgeries and recoveries as a result. We know I have rheumatoid arthritis and my medical team are unsure if this links into the bone disease or not. I want to be able to prepare for what the future holds in some way. We all, in general, like to plan ahead in life. We plan for retirement, we plan holidays, we plan special events. We look forward to things. It’s called living. I’m in limbo. I’m in pain. I face more surgeries and an unknown future. I’m so tired…no actually, I’m exhausted. I need to deal with this though as answers may not be forth coming, not the sort I am after anyway. I need to be prepared for more of the unknown, more questions than answers. I need to be strong, stay strong. I need to find ways to live in the limbo. I will find that strength but at this precise moment I need to grieve for what I’ve lost. I know that grieving is all part of arriving at acceptance. When I worked as a change management consultant, I used a grief model with organizations dealing with massive change called the “Five Gs of Change:” 1. Griping. This stage is when you feel like you just can’t do this. It’s all too much 2. Groaning. This stage is the complaining stage. The “woe is me stage.” 3. Groping. In this stage you begin to walk forward as if in a forest, moving the trees out of your way so you can begin to see a little clearer. 4. Grasping. You begin to understand what the new situation means. You begin to focus on solutions rather than problems. 5. Growing. You embrace the new, find ways to live again and acceptance brings peace. I’ve journeyed through this model a number of times over the years and I think I might be traveling through it again after my “dead bone” news. Hopefully I will begin the growing stage again very soon. We want to hear your story. Become a Mighty contributor here . Thinkstock Image By: Archv

    Mark Thompson

    Finding a Cure for Mysterious, Undiagnosed Symptoms

    When a doctor or a surgeon finds a structural abnormality, fixes it and the patient gets better, that sounds like a success story. But is it really a success story when the doctor can’t explain how the structural abnormality could result in the surprising symptoms experienced by the patient? Wouldn’t it be a better success if the solution didn’t raise more questions than it answered? If you are struggling with an undiagnosed condition, I can sympathize, empathize and all the other -pathizes. I went 22 years with a strange malady. I experienced intermittent “episodes” (the only word used by my doctors) of trouble talking, walking and semi-voluntary movements. More descriptive words might include non-epileptic seizures (NES) or possibly pseudo-seizures, since the episodes don’t register on an EEG machine like typical seizures. If the “episode” was severe enough, I found it difficult to form words in my mind. Neurologists called my problem psychosomatic – also, psychogenic, conversion and functional neurological disorder. Psychiatrists called it PTSD, anxiety and depression. I took a variety of medications and spoke freely in therapy, but nothing helped. Sleeping was difficult because symptoms would get worse when I laid down. I woke up feeling unrefreshed but glad to get in the vertical position. Naps were a necessity.   Then I began to notice I could trigger symptoms by pressing on various parts of my body, including my abdomen, my shoulder, my jaw, on top of my head (neck traction) and also the side of my neck. Turning my head to the right was also a trigger, as was a pelvic tilt. I could relieve symptoms by opening my jaw and sticking out my tongue. The Jendrassik maneuver also helped. Someone on the internet suggested I rule out Eagle’s syndrome (ES), so I went to a skull-base and neck surgeon, who did rule out ES. But he was intrigued by something he saw in the video camera of my throat. He thought he saw something poking into my throat when I swallowed, something much lower than where ES would show up. He injected me with lidocaine to numb the area, and immediately, I noticed an improvement because I couldn’t trigger my speech trouble. I could lie down without trouble talking or thinking. The surgeon was very frank, saying he didn’t understand the neurological symptoms, but the fact that lying down was a trigger made sense due to the proximity to the hyoid bone, which “floats” and shifts position when people lie down. He thought he would find something abnormal if he opened me up and asked my permission for him to do so, but said he couldn’t promise me it would make any difference with my symptoms. He’d never heard of symptoms like mine. We talked about uncertainty and how we both cope with doubt. I shared my decades-long doubts about my sanity, and he shared his own understanding of the limits of medicine. I agreed to the surgery because I couldn’t overlook the evidence on the video camera and my good response to the lidocaine. I hated being unique, but wasn’t going to let my uniqueness stop me from doing what seemed right. On the table, the surgeon found a structural abnormality on the left superior cornu of my thyroid cartilage: i.e. my voice box. The tendon that was supposed to be attached was dislodged and the cornu (sharp horn) was bent inward, poking into my throat. The surgeon removed two centimeters of this bent cartilage. Waking up from surgery, I noticed an immediate improvement when lying down, in that I could still maintain the ability to speak. However, I was much more sensitive to bumps and jarring. Swallowing food often triggered “episodes.” A long, slow year later, I am much improved. To be fair, I did begin taking an antidepressant in that year, and I do wonder if that was a factor in my improvement, but I can’t escape the fact that the surgery had such an immediate effect, both for good and for ill. I feel sure I found a big piece of the puzzle, if not the whole picture. (Did I just mix two metaphors?) I know there are many conditions that are challenging to diagnose. For example, the time necessary to diagnose multiple sclerosis can be many years. Lupus is also difficult to recognize. But I had no idea there existed a condition where doctors could find and correct a problem, a problem that existed for 22 years, and still have no idea how the body and mind could be so affected! We truly are living in a time of mystery and wonder! I know there will be many who doubt my story, but I swear it is true. People, friends, family and doctors have all questioned my mental state. A doctor came right out and asked if I was faking this. I gave him a direct answer: no, I am not making this up. I don’t think anyone questions my sincerity and willingness to consider all options. Assuming good will, good motives and good intentions are not enough, I think the fact that I’ve had a good outcome adds up to a reasonably good approximation of the truth. I’ve endured a long illness and come through to a better state. And isn’t that what matters most? I’ll leave others to answer the whys and what fors. I’m now going to turn my attention to other matters, but if a medical scientist ever wants to look me up and offer an explanation, I’d be a receptive listener. Call me. We’ll do lunch. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via monkeybusinessimages.

    Chronic Pain: A Story With No End

    As I close the chapters of my undergrad life, I find myself pausing to reflect on the difficult journey that got me here. Just shy of halfway through my senior year of college, I woke up with incredible stomach pain. It was the week before finals and two days after my semester-long internship had finished. I stumbled out of my room. My roommate was about to leave for a day on set, but when she saw my pale, sweaty face she paused. “I’ll be fine,” I assured her. “I think I’m going to drive myself to urgent care.” “OK…Call me if you need anything.” I packed a bag and got in my car. The pain wasn’t constant, so I was pretty confident I could get to the urgent care center on the other side of town. It was only a 10 minute drive. When I got there, I found it difficult to stand at the front desk and sign in. Surprisingly, I also found it difficult to sit down. I couldn’t take a deep breath without a pain shooting through my back and stomach, somewhere right of my belly button. I also felt dizzy and nauseated, but I hadn’t eaten yet that day and the doctor wanted to order more scans. For a clear read, I couldn’t have anything in my stomach. After 15 or 20 minutes, an attendant showed me to a room while I waddled slowly after her. I found some relief reclining on the doctor’s padded exam table. The doctor came in and poked around. She ordered a pregnancy test, despite my insistence to the contrary. Finally, she told me she thought I might have appendicitis, but this building didn’t have the scanning equipment. She directed me to a hospital less than two miles down the road, and asked if she should call an ambulance for me. Ever the independent woman, I declined. I was feeling a little better since lying down, plus I didn’t want to leave my car behind. Armed with paperwork that was supposed to shoot me to the front of the emergency room line, I got back in my car. That was the longest two-mile drive of my life. I drove one-handed, while my left hand clutched my belly. I regretted not accepting the help that was offered to me in the form of an ambulance. Finally, with the hospital in sight, a construction man decided to make the car right in front of me the last one through a one-lane street. I burst into tears as my pain burned red-hot. I got to the ER with tears and sweat salting my face, only to be asked to take a seat and wait my turn. Again. I know I spent a long, exhausting day in that hospital, but the details are a blur. I got a CAT scan that ruled out appendicitis. I was refused water, food, and medication by the female doctor who told me to go home and take some Midol for my cramps. With tears of rage, pain, hunger, and utter exhaustion, I told her quite clearly that this pain was not normal and not something I could control on my own. She said the only way the hospital could offer me medication for pain control was if I had someone there with me. My roommate could leave set long enough to pick me up and take me home, but couldn’t sit with me for an hour for the drugs to be ordered and administered. My family lives 600 miles from my college. My best friend was in England for the semester. I even tried contacting the guy I was dating, who was busy, and my cousin at work an hour away. I was baffled that I could be in a hospital and feel so utterly isolated and helpless. At one point, a lab tech told me that if I couldn’t stop shaking and crying, she couldn’t perform the exam that might solve my pain. I did my best, but still got no answers. Finally, I checked myself into the hospital for an overnight stay. If I wasn’t driving home, the doctor agreed to give me morphine. My roommate texted me again when she left work, and I asked her to bring me some food because I still hadn’t eaten that day and the hospital kitchen was closed by the time I was check in for the night. At 10 p.m., 11 hours after I left my house, I ate my first meal. The morphine controlled my pain, but did not take it away. When my roommate left, I fell into a fretful sleep. My mom arrived the next morning to check me out and took me back to my house. She helped me pack and drove me back home with her. I emailed all my professors and opted to take incompletes in all 19 units I was enrolled in that semester. A month later, I had an inconclusive laparoscopic surgery. Two months later, the spring semester started. I tried to attend class, but had to leave after 30 minutes. I didn’t return to campus for another five months. It’s been over a year. I’ve seen specialists up and down California, but not found answers in any scan, blood work, allergy test, procedure, or diet change. I work with a wonderful doctor who treats me as a person, not a list of symptoms. I’m a college graduate now, through sheer force of will. I earned my degree (communications studies) and two minors (applied psychology and holistic wellness). I consider myself a storyteller, which makes it frustrating that this story doesn’t have a conclusion. Every day is still a balance of what I can do, how far I can walk, how long I can sit up. I’ve discovered yin yoga and mindfulness meditation. I listen to my body and honor its limits. I still smile and laugh daily, so the people outside my support group don’t see my pain. They don’t know my story. Now, you do. We want to hear your story. Become a Mighty contributor here . Thinkstock Image By: canbedone

    The Strange Phase of Being Chronically Ill Without a Cure

    I am going through a strange phase of my illness at the moment. The illness is still there, the flare ups are still there and the heart is still getting worse. The illness in itself is quite stable, in its unstableness. The strange phase is that for the last two and half years, I have basically been a full-time hospital patient. I have averaged around three hospital appointments a week and I have had countless admissions to A&E by ambulance, surgery’s and tests. Now however, I have reached a point where most of my doctors have done what they can. They have carried out the tests, they have diagnosed the conditions and where appropriate, have tried medication. Now, for the most part, there is nothing the doctors can do apart from keep an eye on me, so I have gone from all those appointments to probably only one a week. I have been left to fend for myself. Very rarely now do I even go to hospital when I have a really bad angina attack. Instead, we treat it at home. All of a sudden I have vast amounts of time. I went from working full-time, to very abruptly becoming a full-time patient, to now, just being ill. I have to be honest, I really don’t know what to do with that. What do you do with just being ill? When I was working I had lots to sink my teeth into. When I was a patient, before we had a diagnosis, I did lots of medical research. When I finally got my underlying diagnosis, I did even more medical research. Occasionally, there is new research published about one of my conditions and everything goes into overdrive for a couple of weeks… Until my doctors tell me that I am clutching at straws and they share the reasons why it won’t work on me. Then I am left with just being ill. The big step now for me is to spend some time to learn my limitations within my, “just being ill” state, and to figure out what that means for my life. While the doctors can’t help it, that doesn’t mean I have given up and one way or another I will forge out a life for myself. On my good days, I am writing my PhD. On my bad days, I knit for homeless people. I am trying to push myself to do more within my physical limitations. To avoid operation number 2o, I am desperately trying to strengthen my ankles, which involves painful physical therapy. I also have started to do ballet, which is really enjoyable, and actually a lot gentler than you might think. Of course, as this is a degenerative condition, there is always something new going wrong to look at. But, it is also an acute reminder that this state of just being ill, may actually be as good as it gets, and I have to make the most of it. We want to hear your story. Become a Mighty contributor here . Thinkstock Images By: Mike Watson Images