Medical PTSD

It was my brother, an OIF Veteran, who recognized my behavior pattern as PTSD. "Pam..." he said to me very gently, "you react to things just like I do." It was if the clouds parted and suddenly everything became clear. I had PTSD from my medical experiences. I've gone into details with my counselors and one close friend who also understands PTSD first-hand, and that has helped a lot. Each of us has it from a different source, but if you change the words around, the situations are the same. The feelings are the same. The panic about doing things that could potentially help you... Being so overwhelmed by something so simple that you freeze and shut down. Wanting to run and not knowing where to run to so just vibrating in place. Yeah... it's real. It's crippling. It's a disease. Right now, I need to face having an MRI, and I'm terrified.

I'm not claustrophobic. Nothing that straightforward. It's not the medical procedure itself. I'm actually worried that the results will be negative. They're always negative. But that's not unusual for my disease. From what I've read this disease only presents on a scan about 50% of the time. I'm worried that this is going to be used against me for the purposes of denying me care. "You're just crazy. You need to come off your medication and you'll be fine." That's what the last doctors said. That was based off of test results that every other doctor has looked at and said, "No, that's an abnormal response." But they're not the doctors taking care of me for this...

I was told so long for a child that I wasn't sick. That I just needed to try harder. Then I get really sick and find out, "You should be in a coma. I don't know how you're up and walking around!" Well, this isn't far off from normal for me, doc. This isn't that bad. What do you mean I'm a death's door?

It was tested by three different labs. One was a cardiologist. One was the Navy. One was an endocrinologist. This was over a 6 month period. I was later retested in Everett and Seattle. I was retested in St. Louis. I was retested here. All of that should have meant something. But it didn't and she wan't listening to me when I told her I was getting sicker without the medication.

Now it's an MRI and I'm betting that it's going to come back clean, and these new endocrinologists are going to start singing the other doctor's tune: you're fine. You're just delusional. None of those symptoms ever happened. All of those previous doctors didn't know what they were doing. Stop bothering us, kid. You're not that sick...

Really? I landed in the ER with a blood pressure of 80/40 from vomiting and that was just what... Magic? That's not an adrenal crash? I just don't know how to vomit properly? Please enlighten me so that I may do these things the right way and not waste your time.

But I can't say any of that, now, can I? The easiest thing a doctor can say is, "No." That's the shortest complete sentence in the English language, by the way. No. No, we don't think you have this disease. No, we're not going to give you access to treatment. No, we don't have access to the antibody test that would show your disease. No, we have nothing left for you. Whatever it is you have going on? Not our problem. Go away.

And then what do I do? Do I go back to my old doctors who diagnosed me? They're in Seattle and I'm in Denver. How do I accomplish this? Can I even muster the strength to try to see this through? Do I give up on this side of it for a while and instead concentrate on the small fiber neuropathy?

Oh, and that 50% chance it may actually show on my MRI? That feels more like 0.000005% of a chance. I though the abnormal blood tests would be enough, but apparently not. So now I don't know what it will take, and that's terrifying. I thought I had a leg to stand on, but the ground gave way beneath my feet.

Well, here goes. Off to the appointment and we'll see what happens on the other side.

Self-pity is the enemy!!!

I admit, I do love to wallow in some self-pity sometimes. It feels sooooooo good to feel sorry for myself. "Look at that miserable lump. See how worthless she is? Why, I'm surprised she can even wake up in the morning... She'll never amount to anything. Look how frail she is. What a waste of human life." Anything I've done before? Doesn't matter... That was luck. I've secretly been faking it this whole time and no one was the wiser. I never was an all-powerful wizard. I was just a gal in a funny hat. I'm going to sit and pout about how I never get anything that I really want and that's just proof how miserable I am. My life is hard because that's the best I deserve. I should be glad it's not worse now and when it does get worse, "Well... then you'll really know how awful you are." I cannot tell you how dangerous this type of thinking is.

I have two good options here. The first is pretty straightforward. If I'm being a lump because it's a bad health day, that's a free pass. And NO ONE, not even myself, gets to talk nasty to the sick person. There is no negotiating with a disease. (Melody Beattie, I believe.) And if there's no way to budge the disease, what use is harassing the person held captive by the disease? So option one: free pass.

Option two: do something, anything constructive. If it's not option one, it's a reasonable (I won't say good) health day. I tell the voice(s) to STFD, STFU; I'm not hearing it. I'm going to do something constructive and then they can eat crow. Really easy for option two? Take a shower. It doesn't matter if I have to sit in the tub to get clean. I will get clean. I will have done something productive, and something to take care of myself, in one event. One constructive event leads to another: clean hair means hair care. Means making myself look good in the mirror. Means brushing my teeth and putting on a little make-up, which can change sick-looking into sexy-dusky-eyes instantly. I have done something productive. I am not a lump. I am clean and look appropriate to leave the house. That's something.

The thing with the shower is I can go on auto-pilot. The water on my skin stimulates my nervous system, which is a physical difference to whatever was going on before. Then, I can't take a shower without washing my hair, because that just feels yucky and weird. Pretty soon, it's not so hard to be responsible and wash the rest of me (which also feels better than just getting soaked). Then I can relax a little while and be proud of those small steps. "I can handle this. It's okay. I can try a little more." And I just do little by little until I've finished the routine. When I come out sparkly clean on the other side, and I can see that in the mirror, I can actually hold my head up a little more.

I'll do one small constructive task, even if it's just put three dirty dishes in the dishwasher. I'll straighten up some small area. If I'm feeling really adventurous, I might even do a load of laundry. But that's a big commitment on days like these. If at all possible, I'll get out of the house to run an errand. That may seem like something really big, but getting out from the same four walls, doing something that I've done a thousand times like driving the car, that doesn't have to be so big. It's actually even better if I have to drive a far distance---more than 30 minutes each way. Then I can just have me and the road, the scenery, and upbeat music on the stereo for a while. No decisions. I'm just getting there.

I break things down to the next indicated step. I don't worry about anything but the step in front of me. Twenty minutes from now doesn't exist. What's right here? What's right now? I've arrived at my destination? Okay, which store was I coming here for? Go to that one. What was I here to get? Get it. Am I set to return home? Okay, get a bottle of water because you're thirsty, first. Now ready? Okay, go home, triumphant. Deed well done. Reward yourself with some Facebook games and then we'll see if we can't get more done later. But don't worry about that until later.

Then I check in with the previous nasty voices. Their mouths are too full of crow to bother me much more today.

Nose pressed to the glass for pain relief

   Artwork © Damien Goidich, used with permission

I hate pain. Not just for the sake of hating pain, but for how anxious it makes me. I deal with pain on a daily basis, but my condition now is far better than it was during the 4.5 year migraine. So when my body decides it's time for me to be in that level of pain again (thank you, kidney stones) I get nervous. This is life-stopping, house-bound levels of pain. Even with pain pills a sudden spike in pain can cause me to yelp. The spikes come without warning. Suddenly a dull 2 of pain shoots to a 7. It startles me. Then I get anxious waiting for the next spike. I try to stay calm, but I know it's coming. When it does the world stops. Then it goes away and I can come back. My heart races and I try to relax, knowing that if I brace myself, that only makes it worse.

I try not to think about when this is going to end. That only leads me to question if it will end. It's a known complication of my pituitary disease. The pituitaries affects the adrenal glands, the adrenal glands affect the kidneys. There are enough kidney stones in both my kidneys that this will be a repeat performance. They started when I was 17 and for a while there I got them like clockwork ever 3 years in the spring. They hadn't bothered me for a while there. Now they're back in force.

The anxiety comes from not knowing if I can manage the pain. That's my BIGGEST fear: that I will be in pain, and they won't want to give me the medication that can take care of it. They'll think I'm exaggerating, drug-seeking, hysterical, crazy, criminal... That's what I have to face every time I petition a doctor to deal with my pain.

The situation with my kidney stone almost went really badly. One of the nurses though it was cute how politely I asked for more pain pills. He then shared that at the nurses' station. The other nurses immediately got scared and started whispering. The nurse then told them that he didn't suspect me of anything because I still had pain medication left over from my first doctor's visit ten days ago. I was just following protocol that if it didn't get better by a certain date, I should go in for a CT scan. But just because he thought I was cute, I was almost branded a junkie. I'm just lucky my pain tolerance is so high that I don't need much medication. Otherwise that situation could have gone a lot worse.

The kidney stones remind me where my pain has been, and where it could be again. It reminds me I'm still terribly vulnerable, still terribly frail. "I can hurt you any time I want and there's nothing you can do about it." Talk about an abusive relationship! I'm drinking water like a mad woman and pissing like a race horse. I've swollen up ten pounds because of the prednisone. My kidney stones are calcium oxalate, so I already avoided those in food sources, but I'm loathe to give up chocolate and dairy. (It's good news for my bone density, however.) I live in constant fear of what my body is going to do to me next!

"You'll get through this... it won't be this bad forever..." Sure, but someday, it might be that bad forever. It was before, for years. Not everyone dies peacefully in their sleep. And even though there is end-of-life "comfort care," the doctors will sure let you suffer in agony for a long time before they let that be an option.

Ironically, I've been more productive with the kidney stones than before. The pills I have for my kidneys also takes care of the pain I have from my nerves. I'm drawing, I'm painting, I was able to help one friend with his resume and another with his college essays. I've been able to do more writing. I can rely on my hands to not torture me. The pain pills give me freedom.

I moved across the country TWICE to find a location where my pain was tolerable enough that I would be able to muster through without pain pills. Not because I wanted to. Because I had to. No one would give me access to medication that gave me pain control, and I wasn't going to break the law. The sad thing is, it's easier to get these drugs from the street. Drug dealers don't require CT scans and urine exams. Only problem is, one 5mg percocet---roughly 4 hours of pain relief, if your drug tolerance is low enough---meant four years in jail for one of my dad's clients. Their life is ruined now. That will haunt them forever. After being a felon, you lose certain rights. They are a second-class citizen now, literally. All for four hours. On the other hand, my migraine pills are $36 a piece and insurance only covered 6 a month when I needed 24. The non-narcotic pain pills are $27 each and I'm to take 3 a day. Narcotics are $4 for a month's supply, but trying to get a prescription... fugetaboutit.

I knew the humidity and barometric pressure changes made my pain worse. I hated giving up the doctors in Seattle that had taken care of my other issues so well, but the pain issue was just too overwhelming, physically and economically. So I moved to an arid climate at elevation so the change in pressure isn't as severe when it rolls through. The move helped significantly. Mind you, that doesn't mean I'm functional where I am now. It means the difference between being able to get out of bed or not, which is totally worth it. I can walk to the bathroom with out screaming. I can treat my migraines with ibuprofen instead of that expensive medication. I have my bed-ridden days, but they're not as frequent out here. It's thanks to my father that moving was an option. Other people aren't as lucky.

I want to be able to work. I have that capacity if I have pain control. I have the desire, the skills and the value as an employee to get work, even in this economy. If I had a body I could count on, I could do that. If I knew that I could get up in the morning, take a pill and not have to worry about some attack during the day, I could be NEAR-NORMAL. This isn't about feeling high. This is about feeling good enough to take care of business. This is about being productive, instead of being a lump on the couch counting off the minutes until it's over. This is about getting OFF Social Security Disability and being a contributing member of society again. Would I rather not have to take anything to be functional? Absolutely. But that's not realistic.

I know my doctor's hands are tied. I know that it could mean his/her license & livelihood just because the numbers look bad. I'm not worth that risk. Doctors don't go into business to be harassed by the government. No one wants that. It's easier to just let me, and others like me suffer. I don't blame them for that at all. They're doing the best they can. They're under ENORMOUS pressure. And I know it has to break their heart. That's why so many like me are simply ignored and told not to make follow up appointments. "We have nothing left for you..." is what they say. They do have something left for me, but they're not allowed give it. It's all the same in the end.

So each time I have to take another pill for this pain, I know that's pain relief in the future that I'm losing. I know I need the pain relief now: the kidney pain stops me completely. But I'd like to be able to stretch this medication out as long as possible. I know that's wrong. But each pill is another 4 hours of relief from my daily nerve pain. Each pill is 4 hours of solid work I could get done. Each pill is another flare that I don't have to suffer through in silence. I horde them as much as possible, knowing that's not what I'm supposed to do, but the fear of future pain is too much. I know more pain is coming. I want to have something to take care of it when it does. So if the pain isn't too bad now, I'll suffer through it. I keep the pills for when the pain is incapacitating. If the pain interferes with me walking to the bathroom, then it's time for a pill. Because, I've been to the ER with flair pain and migraine pain, and they don't give out medication for that. They have to see it on a scan. They have to see blood in the urine. Otherwise you're hysterical, drug-seeking, and screwed for relief.

I'm very blessed to have the support I do. But it's also hard knowing that one simple pill, and I wouldn't need the charity. One simple prescription, and I could take care of myself. I could get out from behind this computer screen, off this couch, and out in the world. If I knew I had a regular monthly prescription, I'd be back working full time in the IT industry. I could tell a potential employer, "yes, you can rely on me..."

Someday, I hope....

[Repost] Teen wins award for new targeted cancer treatment

This is just too cool not to share! For her design of a cancer-fighting technique that targets tumors and leaves healthy tissue intact, Angela Zhang, of Cupertino, has won a best-of-the-best national science competition and a $100,000 scholarship. She is all of 17 years old.

Zhang, a senior at Monta Vista High School in Cupertino, won the grand prize in the Siemens Competition in Math, Science and Technology, which funds and recognizes outstanding achievement. She designed a gold-iron oxide nanoparticle to deliver chemotherapy. It's like sending in a cellphone-carrying ninja to assassinate cancer stem cells and report back while in action.

"She showed great creativity and initiative in designing a nanoparticle system that can be triggered to release drugs at the site of the tumor while also allowing for non-invasive imaging. Her work is an important step in developing new approaches to the therapeutic targeting of tumors via nanotechnology," competition judge Tejal Desai, a professor at UC San Francisco, said in a statement.

...Zhang devised her experiment to target tumors, instead of blasting the body with chemicals, which also destroy healthy cells and cause side effects. Harnessing cutting-edge research into nanotechnology, she injected tumor cells into mice -- "I'm sorry, that must sound horrible" -- let them grow and then injected a nanoparticle carrying the cancer-fighting drug salinomycin.
Tracking the particle with an infrared laser, she found that the tumors diminished.

Complete story at 17-year-old Cupertino student wins Siemens Competition and $100,000

Better care comes through humility

This is one of the most frightening statements from a doctor I've ever heard: "If we weren't this arrogant, we couldn't do our job." That is just baffling to me. When have you ever heard, "humility goes before the fall..."? That's just not how it works. I understand that what doctors do is scary and taxing. It's difficult to know where to draw emotional boundaries. The landscape is fraught with danger and certain risks must be taken. That takes courage, true. But courage can be present with humility. There doesn't need to be the god-like attitude of "I know...." It's arrogance that doesn't let us see mistakes, even as we're making them. Arrogance doesn't listen. Arrogance instructs: "Who are you to tell me that I'm wrong?" But I've never known any degree, any amount of schooling to make a person immune from making mistakes. That just doesn't happen. Even a doctor can misplace their house keys.

Doctors are said to be some of the worst patients, and it's largely to do with that arrogance. As one doctor put it: "I didn’t tell the doctors all of my symptoms and the events surrounding them. Without even thinking about it, I only told them what I thought was relevant. In fact, a common mistake we doctors make is getting too attached to the first diagnosis we think of, and then failing to ask about other symptoms, other clues.” (Doctor's 'Worst Ever' Headache, and Learning the Patient Story) He was lucky in that they were able to reach the right diagnosis anyway, but how quickly could they have been thrown off track? "You know, most doctors are taught that if a patient says "the worst headache of my life," then it's a subarachnoid hemorrhage until proven otherwise. That means a bleed in the brain, usually caused by a ruptured aneurysm. But I knew something like that couldn't happen to me. And anyway, while I suppose technically this could be the worst headache of my life, it really wasn't that bad. I mean, technically everyone has had the worst headache of their life, right?" This doctor's "knowing" could have cost him his life.

Another doctor describes her experience in missing her son's farsightedness: "It’s really easy to get sure of yourself as a doctor, especially when you’ve been doing it for a while—and especially when you have lots of patients to see. It’s easy to say: I know this. I’ve seen this before; I know what to do. Been there, done that. Usually, it works out. But sometimes, it can make us miss things we should see. ...We tend to think of humility as an optional virtue. Humble people are admirable and all that, but we think of humility as something that can get in the way of excellence and achievement." (It’s only through humility that we can achieve great things) But that couldn't be farther from the truth. It's only when we believe that we don't know everything that we are willing to investigate. In her arrogance over the situation, she even started to think her son was acting badly on purpose instead of inquiring about a possible cause.

Arrogance places an immediate wall in doctor-patient communication. "Most patients still believe that physicians still provide what the ethics of medicine requires us to: “consideration, compassion and benevolence for our patients”. They come to the doctor with the expectation that they will get to tell their story and be heard. That they will enter into a discussion with their doctor about the risks and benefits of certain tests, therapies and alternatives. That their physician will help them, as a patient, make their own best decision for themselves and be comfortable making that decision. ...Unfortunately the healthcare experience for many is quite the opposite. The doctor gives a patient an order that is expected to be followed. Patients that don’t follow these orders are branded “non-compliant” and often excused from the practice." (Find a physician, not a general) Instead of cooperating with the patient and working to find better solutions that work for both parties, it becomes a lose-lose situation for everyone.

The power lies with doctors. "Conventional wisdom [says] that the key to fixing health care begins and ends with changing patient behavior. If only we could get patients to be more compliant, if only patients would do what I tell them, blah, blah, blah. ...If you were to believe the admonitions of the NIH, AHRQ, hospitals, pharma and every WebMD-look alike, you would think that patients these days would be more involved in their visit... asking questions, sharing information and making decisions. But as most physicians will attest... most patients don’t have much to say in the exam room anyway. And the longer they have to wait before being seen, the less patients are likely to bring up the few questions they wanted to ask. This is a huge problem." (The Fastest Way To Disempower, De-Activate, and Disengage Any Patient)

Allowing arrogance allows a culture of abuse to exist. "A nurse I know, attempting to clarify an order, was told, “When you have ‘M.D.’ after your name, then you can talk to me.” A doctor dismissed another’s complaint by simply saying, “I’m important.”" (http://www.nytimes.com/2011/05/08/opinion/08Brown.html?_r=1) Far more than just inappropriate behavior in the workplace, this arrogance has real impact on patients' well-being. "Recent studies suggest that such behavior contributes to medical mistakes, preventable complications and even death. "It is the health care equivalent of road rage," said Peter Angood, chief patient safety officer at the Joint Commission, the nation's leading independent hospital accreditation agency. A survey of health care workers at 102 nonprofit hospitals from 2004 to 2007 found that 67 percent of respondents said they thought there was a link between disruptive behavior and medical mistakes, and 18 percent said they knew of a mistake that occurred because of an obnoxious doctor. ...Another survey by the Institute for Safe Medication Practices, a nonprofit organization, found that 40 percent of hospital staff members reported having been so intimidated by a doctor that they did not share their concerns about orders for medication that appeared to be incorrect. As a result, 7 percent said they contributed to a medication error." (Doctors behaving badly) All of that could have been prevented with just a slight attitude adjustment.

Additionally, not admitting to mistakes or trying to cover things up after the fact only makes it worse. "University of Illinois law professor Jennifer Robbennolt has done a series of studies that show apologies can help resolve legal disputes in cases ranging from medical malpractice and divorce and custody to disputed dismissals and personal injury. “Conventional wisdom has been to avoid apologies because they amount to an admission of guilt that can be damaging to defendants in court,” says Robbennolt, who surveyed more than 550 people about their reaction to apologies offered during settlement negotiations in a hypothetical injury case. “But the studies suggest apologies can actually play a positive role in settling legal cases. ...The apology fulfills some of the goals that triggered the suit, such as a need for respect to assign responsibility and to get a sense that what happened won’t happen again. So receiving an apology can reduce financial aspirations and make it possible for parties to enter into discussions about settlement.”" (Sometimes, an apology can deter a lawsuit)

Admitting mistakes, rather than running from them, is even good business. "After health care providers began admitting mistakes, apologizing and offering compensation, the monthly rate for new claims fell from just over seven per 100,000 patient encounters to 4.52 per 100,000, or 36 percent. The average monthly rate of malpractice lawsuits filed against the hospital fell by more than half, from 2.13 per 100,000 patient encounters to 0.75 per 100,000. The median time it took to resolve claims also dropped by several months, while the mean costs for liability, including compensating patients and paying attorneys, fell by about 60 percent. The average cost for lawsuits that were filed decreased, from nearly $406,000 to $228,000." When Doctors Admit Mistakes, Fewer Malpractice Suits Result, Study Says.

Conversely, when arrogance is tolerated, the consequences can be staggering. "In Anonymous Parents and Deceased Five-year-Old Girl v. Anonymous Obstetrician and Anonymous Hospital, the plaintiffs alleged their infant developed cerebral palsy after a difficult labor and delivery. Deposition testimony of the labor and delivery nurses indicated they were concerned about the lack of progress of the mother’s labor, but they were reluctant to voice those concerns to the obstetrician because of the doctor’s well-known tendency to respond negatively to such nursing input. This North Carolina case settled for $1.2 million." (Laska, L. (Editor) “Hypoxic brain damage to infant”, Medical Malpractice Verdicts, Settlements, and Experts, pg. 34 March 2003.)

Arrogance isn't just bad for patients, it's bad for doctors too. "[A] cultural expectation of medicine is that providers don’t talk about our lack of knowing everything in every situation. We don’t admit our humanness, our capability of making a mistake. We don’t want to seem weak in front of our peers. So we isolate ourselves, and this is never more evident than when we feel we have made a mistake. Instead of getting the necessary support from our colleagues, we keep quiet and go about our business as though nothing has happened. By doing so, we are shutting down emotionally and not allowing healing to take place." (The culture of medicine needs to change) How can anyone learn from, or heal from, making a mistake if they can never admit it? An opportunity for growth and improvement is turned into one of shame and secrecy.

We all know pride goes before the fall, yet somehow we all still fall prey to it. One reason for this may be simply because it's more comfortable. "It’s much harder to go into things realizing that every day, every moment, every child or patient is new. Going into everything with a clear eye, mind, and heart is so much more work—and means acknowledging that there is so much we don’t know. In fact, it means focusing on what we don’t know—and who wants to do that?" (It’s only through humility that we can achieve great things) Believing that we know what's going on, whether we truly do or not, feels more confident, more empowered, more capable. The trouble is, feelings aren't facts. We can feel totally right when we're absolutely dead wrong (sadly, no pun intended).

I met another unicorn!!!

I say we're unicorns because we're the case that doctors learn about in school, but are never supposed to see in their practice. I finally have talked to another person who has my disease!! She's a lovely woman from Kentucky with that slight southern drawl that puts you immediately at ease. We talked for a few hours comparing notes and symptoms, sharing horror stories and difficulties. And above all, we shared our fighting spirit. Neither of us wants to settle for a marginal quality of life. We want to know about our disease in order to conquer it. We don't need to be what we once were, but we know we can be better than this.

Our pattern of disease is very similar, as is our current list of complaints. We've both run into the same sort of stigma in the health community, and similar apathy from health professionals towards our disease. It was like I suddenly had a sister who I was able to turn to and validate, "yup, our parents are off their rocker on this one...". I learned that my experience was not unique, and therefore not my fault.

Now that I know this, I have a whole new crop of questions. Why aren't doctors more interested in our case? Why go into medicine if not to delve into these mysteries? I feel left out in the wilderness because of what seems to be a reluctance to leave the well-lit safety of "what we know." Our symptoms get managed at the absolute bare minimum, but we're never actually given a quality of life. Why is that? Our doctors, wonderful though they may be, shy away from acknowledging the chronic pain and resulting fatigue. (I suspect the War on Drugs has a lot to do with that.) I was absolutely shocked when I finally got a diagnosis of small fiber neuropathy, because that meant an acknowledgement of my pain. And I was able to pass along the name of that diagnosis to my new friend. We're going to keep in touch to see what sort of progress we can make: her in Kentucky, me in Colorado.

One good thing I learned was that going to a specialty clinic like The Cleveland Clinic wouldn't help me. She'd already been and they really had nothing new for her. They were more interested in her doctor, who was able to diagnose her, than they were in her. It was as I suspected: a lot of great marketing, but really the same health care opportunities (or lack thereof) beneath. I dodged a bullet, thanks to her exploration.

I think the most important thing I learned though was that she was just as frustrated as I. She too was driven to find her own answers. She has the same level of dissatisfaction that I do. We both believe there's a more aggressive way to treat us that would give us a better quality of life. We hate that we can't make plans on Monday for Friday, and know we're going to be okay once Friday arrives. We know that pain management exists. We just don't understand why we're being denied access to it. We have a disease that can be verified with blood tests. It's not like there's nothing else wrong with us. Why is it so difficult to believe we have chronic pain as well? Why is it so difficult to understand that some days are worse than others, and flares are unpredictable? Why is it so hard to believe that we really are trying to be more active in life, and aren't just looking for some fix?

There are two conclusions I come to: either they can't/don't care, or they can/do care but it doesn't matter---there are outside forces at work. This is what upsets me most about our health care system. It seems like there is so much that goes on behind the scenes that we don't get to know about but has an affect on our care anyway. The doctors are making their decisions based on what they see, but they rarely explain what it is they're concerned about. I know I would only need a baby dose, 2.5mg, of oxycontin twice a day to handle my regular level of pain. I know that for my flares, I could need as much as 20mg, at worst. That's less than I was on for my chronic migraines. At that time I was on 60mg, three times a day, with a free pass to the ER for as much dilaudid as I wanted. My pain isn't that bad now. I don't need that high a dose or a note for the ER, like before. But still there's this absolute reluctance.

There's also a reluctance by our doctors to prescribe additional medications, even though we are still suffering symptoms. I know I did better when I was taking additional T3 supplements for my thyroid. I had to move, so I lost that doctor. Since then, I keep getting this song and dance that, "because it's not proven..." they don't want to try it. Well, I've been on it before and I felt better. I performed better throughout my day. I was healthier. Isn't that proof enough? But getting a doctor to reach that conclusion is like pulling teeth. This reluctance makes much less sense to me, since we're not even talking about abusive substances. So what's going on there? I don't know that we'll ever get to know.

Even though it's not all good news, it's still a huge relief to know I'm not alone anymore. These problems that I've encountered are not unique. My symptoms are not unique (we both turn ash grey with a bad migraine!). I have validation. I have confirmation. I have a sister-in-arms in this battle against our disease. I feel recharged and ready to give my all again. I'm not just fighting for me. I'm fighting for her too, and she's fighting for me. Together, we can make better progress than we could have alone.

Christmas came early this year ^_^
(Published with permission)

Price tag of pain

"Everything has a price tag of pain," is a saying I like. The idea is that even if a situation is bad, we'll put up with it until we've reached out limit. That's our price tag of pain for that situation. It begs the question, "How much you gonna suffer before you decided to change things?" Often for me it's a mix of procrastination and down-right stubbornness. I can't tell you how many years I struggled with taking my medication on a schedule just because I did not want to have to take the stuff at all. I was a little kid throwing a temper-tantrum. Sure, acting properly felt better. But I didn't want to face it. Taking the pills was admitting my illness was real: that I'm broken. That was the hardest pill to swallow of all.

Thankfully, the consequences of my inaction were swift. Within a few hours of not taking my meds, I would feel terrible. The obvious thing to do was to take my pills. Within 30-45 minutes, I would feel better. It still took years to get disciplined enough to take them right when I woke up. It's so easily a part of my morning routine. Just one more step: swallow these, then brush your teeth. No biggie. But it is. I have medications now that can be seen as recreational drugs. I don't like taking them either. I'll wait for the pain to kick in before I medicate. That's actually not the right way to do things. It's bad for the nervous system to go on that roller-coaster ride. I resist anyway.

The answer, of course, is to pull up my Big Girl pants and deal. Since I'm acting like a child, I'll talk to myself as though I'm a child: "Now, Pamela... you know you don't feel good now, and that you're going to feel worse later if you don't take this. I'm sorry they can't all taste good like your vitamin. But you're strong, and you can make it look effortless... if you want to. Be strong now and stick to a schedule. I know you can do this. Let's take care of it together, and then we'll both feel better." (I'd like to thank my counselor, Carol Peters for teaching me how to do this kind of constructive dialogue with myself.) When I can approach the situation with firm kindness, I'm more successful at accomplishing it. I'm not perfect at it. This morning, I woke up very resistant. But I'm good enough. I took my medication before the price tag of pain kicked in too much.

Each time I do the right thing before that price tag comes into effect, I pat myself on the back. Sometimes literally. It doesn't matter that it's my own hand doing the pat. It feels good, so I use that as a reward to keep my spirits up. I'm on a pill schedule of every 4 hours, and that's no fun to keep track of. So I use a Facebook game as a timer. The crops come in every 4 hours, so I play my game and take my pills. A spoonful of sugar, so they say.... I put water bottles around the house on doctor's orders to stay more hydrated. Each time I pass a room with a water bottle, I have to stop and take 4 gulps of water. It may be silly, but it works. The goal is stable health, and I will do what it takes to get there.

I am willful. That sometimes works for me, and sometimes against me. I need to change my behavior in a nurturing so that it doesn't seem like a burden to do these things. I need to reward myself because, in truth, this is a burden I don't like. I need to acknowledge my efforts so that I'm more likely to put forth the effort in the future. Then I don't procrastinate as much and I'm able to feel more accomplished, building my self-esteem.

"Perfection is the enemy of good enough," so the Russian proverb goes. When I am feeling resistant, I can turn my attitude around in gentle, loving way. I'm already feeling bad, so getting angry at myself doesn't help the situation. I can take care of myself in a way that works for me. I don't have to pay the price tag of pain today if I don't want to.

Pain is not a criminal activity

I don't like being in pain, for the obvious reasons. But there are emotional reasons I don't like being in pain, as well. Pain makes me vulnerable. It makes me feel helpless and powerless. And, because of my past, it can feel like punishment for some unknown wrong. There are feelings of guilt, too, that I am weakened like this. My father raised me to be incredibly independent. I could change the tire on a car before I could legally drive. Asking for help is difficult for me. I despise being a burden. And when it's an issue about pain, I know I'm getting myself into a situation where I may be labeled a drug-seeker and denied care. It's happened before. The potential is frightening. I know I'm telling the truth, but there's no way for them to know that, unless they can see it on a scan.

I've been to the ER about 3 times for flank pain. I knew by the attitudes of the doctors and nurses, they believed I was a woman who just couldn't handle her PMS. There was no blood in my urine. No sign of a kidney stone. Because of cost-cutting measures, scans aren't used as frequently. This is probably my fourth kidney stone, I have more sitting in both kidneys, and tonight was the first time they verified using a CT scan. Up until this point, I was dismissed as a hysterical woman (politely, though). Heck, I was starting to think I was a hysterical woman and just needed to tough it out more. But I couldn't, and yes, there really was something wrong, thank you very much. I joke that I want on my tombstone: "I told you I was sick." Because even this time I had no blood in my urine.

There needs to be the opportunity for more trust between patients and doctors. I know I'm not an addict, but there's not way to see that on a scan. And we're putting doctors careers on the line if they make a mistake. How is that fair? They're trained in the arts of healing. Why on earth are we making them responsible for the behavior of their patients? That's like blaming my car salesman for my car accident. It's silly. Right now we're asking out doctors to be cops. This isn't fair. That sets up doctors to be suspicious and makes patients defensive. Doctors worry about losing their livelihood. Patients fear having to endure soul-crushing, life-stopping pain. We need to start treating addiction like a disease and not a criminal activity. As long as no one can come forward about their addiction because of fear of punishment, it's going to stay in the shadows, festering.

I'm always terrified that something I say, something I do is going to make them think I'm a junkie out to pull a fast one. I'm already vulnerable, weak and frightened by my pain. I don't need to be terrified about every little thing I say on top of that. I've been trying to get my peripheral neuropathy diagnosed for years, but it wasn't until I lost the feeling of "sharp" and "cold" on my feet that anyone started listening. In the meantime, I suffered.

The so-called "safe guards" don't help either. When a mistake arises, even an honest one, the patient is the first suspect. Here's a common example of how a simple mistake can impact an entire life:

The worst part to me was that it was as though it was no big deal to them to inconvenience me, and I felt that my word that I'm constantly wearing my pain patch means nothing if the test doesn't reflect that. How can I prove to them this is true? It's simply my word against the test, right?

When I went in for my retest I decided to ask a nurse to look at my back and verify that I was in fact wearing the patch. She declined to do so, but was receptive to my concerns and very understanding. She instructed the person who processes the urine tests to look into the paperwork a bit deeper, which I appreciated. Low and behold, they'd submitted my test to be compared to a different medication than the one I actually take, which is why the test didn't find any evidence of the medication in my urine. It was looking for something I don't take.

Identifying the mistake was a big relief, but why did I have to be the one to bring up that possibility? If I hadn't they'd have submitted the test the exact same way and I'd still be under scrutiny and feel like they consider me a criminal and liar. Even worse I'd be worried they might decide not to treat me anymore.
Pain Management Drug Testing: Demoralizing Mistrust - Diana Lee

Is addiction a bad thing? Yes. But is it a criminal thing? Wouldn't it be more productive to treat it like a disease? Isn't that what we try to do with rehab centers? Why have the threat of prison there? Why would anyone want to come forward and say, "I'm an addict, I need help..." when doing so could get you locked up?

Making drug use a criminal activity is counter-productive. It harms patients who have to defend their pain. It hurts doctors who have to defend their medical decisions. It denies addicts a safe path to recovery. It costs and obscene amount of money for terrible results. One nurse, who would like to remain anonymous, said that even in her office, whenever a pain patient called in for their monthly refill, everyone in the office rolled their eyes, "it's the junkie calling for their monthly fix..." they all thought. But the staff never had that attitude towards diabetics calling in for their monthly insulin refill. Being an honest pain patient carries a stigma. We're discriminated against. We're punished for being in pain.

We need to end the War on Drugs and decriminalize drug use. We need to bring back the rehab clinics we lost after 1992. It needs to be a disease covered by health insurance. We need to bring back family programs for the support of the family of the addict, and have these covered by insurance as well. We need to be honest that relapse is just as normal with asthmatics, diabetics, heart patients, and addicts, and not give up when a relapse happens. When an addict can honestly walk forward and say, "I need a fix," and get it, then when I come forward and say, "I'm in pain," they know I'm telling the truth. I know it goes against almost every fiber in my being to allow an addict to just engage in that activity. But the truth is judging these people does no good for anyone. We must embrace this problem rather than run from it. We need to be forgiving. Most addicts outgrow use on their own. For the rest, there is treatment and management of the disease. We are sophisticated enough as a culture to handle this.

I had a successful ER visit this time. I got the right treatment. I didn't have to suffer. But there have been long stretches of time where I did suffer. I don't ever want to go through that again. Neither should anyone else have to. I ask this for everyone suffering. Let it begin with you. Write your representative. Let them know that you would like to see legislation that would decriminalize drug use. Ask them to end the War on Drugs. Ask them to do this for everyone's sake. Site the CATO article or any other source you find worthy. (One group I particularly like is Law Enforcement Against Prohibition.) Raise your voice. Be heard. We can change this. And then pain won't be suspected as a criminal activity.


Thank you

New neuroendocrinologist is good!!!

The new neuroendocrinologist is good!!! She's a fellow, and even brought in her supervisor, and neither had any doubt about my diagnosis. There is even a test for the antibody that they know about, but it's only made in Israel. Still, they're going to see if they can get a hold of it. Meanwhile, they want me on my medication, but we're going to switch to hydrocortisone to see if I tolerate that better than the prednisone. They're going to do research on azathioprine to see if I can try it safely. Man, I was really scared there for a while. But now it really looks like Colorado is the right place for me. Whew!!! ^_^

[Edited to add]
Unfortunately, this did not remain true. The new neuroendocrinologist started singing the old neuroendocrinologists' tune. However, my old endocrinologist who witnessed my disease go into full remission and return, got promoted to the head of neuroendocrinology at Swedish Hospital in Seattle. The journey continues.