Thursday, July 28, 2011

Dear Doctors: "It feels good to laugh and cry!"

This was the experience of a Psychologist at Stanford after going under hypnosis and going through an activity to tear down the walls of time. "Phil further realized that the world of academia suppresses the public show of emotion in favor of cool rationality." (The Time Paradox, Philip Lombardo) THIS is what I believe is wrong with the medical profession. And I believe it can be improved.

If you're not allowed to laugh and cry, then every interaction with another human being is about keeping distance. This is not conducive to building relationships. Every medical professional is so serious that out of the scores of doctors I've had, only two I know of cracked a joke or a smile. Heck, if a doctor just acted like he was happy to meet me, that would be a HUGE improvement to patient-doctor relations.

But so often doctors think they have to maintain this stodgy air of sophistication and learning as part of their professional persona. That is alienating to me as a patient, and frankly when you stand on that pedestal, it means there's a long way to fall.

Can we bring customer service to the doctor's visit, please? It's actually a skill that needs to be learned. There's a special way of going into the present moment, setting all worries aside, and greeting a person like they're an old friend, regardless of what baggage they carry through the door. That is customer service.

I had to learn it several ways for dealing with all sorts of customers (tentative, egocentric, angry, hostile, etc.). It's not something that comes naturally just by being a good person. It's doesn't come with "breeding" or manners, either. Law School is one case where they are hostile towards you and you have to remain calm and polite, so that you can learn to keep your cool with a hostile judge. It's a skill.

I think if we brought the laughter and tears back... If we allowed doctors to step down from those pedestals and be human... If they weren't forced by a culture of professionalism to be aloof... If we instructed our doctors in customer service... Perhaps then we could see the doctor-patient relationship improve across the board for all specialties and practices.

Here's to the dream... ;^)

Saturday, July 16, 2011

My idea of the perfect doctor's visit...

What I would like is a more innocent, humble approach. Something like:
Hey [Name]! [Sits comfortably] How are you today? [Takes notes. Summarizes vocally for patient.] What are you in for? [Takes notes. Summarizes vocally for patient.] Okay, you have [these] symptoms, [these] diagnoses, you're on [these] pills and undergoing [this] treatment/therapy. And what are you doing at home? [Takes notes. Summarizes vocally for patient.]

Well, let's look at what does what and see if we can discover a little more of what's going on. Okay, now what's your primary concern? [Takes notes. Summarizes vocally for patient.] Based on all of this, here's what I see. This is what I think might work and why. Does that match up with what you see here? Does that sound like a good idea to you?

Alright, here are my written instructions for you. You should notice [this and this], and take [these and these] precautions. Here's what I would like you to do at home. If you notice anything that worries you, or that you can't meet these expectations, you can always call our nurse line. If it worries our nurse, they'll call me immediately. Here's a card with that number. Keep track of your progress for me and report back to me in [time] if all goes well. Do you have any questions for me? [Note of patient's questions. Questions summarized & answered.]

Are you comfortable with this plan? [If not, see if a second opinion is wanted and if they know how to go about getting one.]

Great, I'll see you back in [time]. Hang in there and I hope it helps!

That is how I want my doctors to act... like they know they're human. Then it wouldn't be so far to fall if they're wrong! Trust wouldn't be shattered upon impact.

I dare to dream!

Friday, July 15, 2011

Realizations as Neurontin kicks in...

Rats... Gonna need Physical Therapy sooner than I thought. I've been couching for so long that I don't have the core muscle strength to sit upright at a desk for long periods anymore. This is a shock to me. I didn't realize I'd gotten this bad. But now that the nerve pain is gone, I can feel the fatigue in my muscles as they strain to keep me upright. I can't maintain good posture for very long. Yikes! This is a problem.

But in the world of good news, I was able to take a shower standing up. I did it without thinking this morning. I haven't been able to do that without the use of prescribed narcotics since 2001. That's an amazing thing. Half way through, when I was reaching for the shampoo, I realized I was reaching down instead of across. I've been standing this whole time... I thought to myself, amazed.

Progress, not perfection. I am reveling in the glory of fewer daily sacrifices.

Ironically, I had a counter-point experience in helping a friend with her pills. She uses an old ice cream jug (with a handle) to hold them all. And I thought, Omg... I use a lunchbox! We both have to have cases for our pills! But it works, so hey... I try to make it look awesome. I have a stylish artistic lunch box (now highly marketed to tourists) that says "Seattle" on it, and no one is ever the wiser. Except that I've told you all now. ^_^

Baby steps... I can do this.

Thursday, July 14, 2011

Cutting & Shame

I had a very important conversation with my cousin today. She recently discovered a close friend of hers uses cutting as a coping mechanism. She was alarmed, as most people would be. And her friend was ashamed, as most people would be. I'd like to offer a different point of view.

As mentioned before*, we like to think of ourselves as in charge; that our conscious mind is the decision maker. This is far from true. Our conscious mind is more like the rider on an elephant (the subconscious). Sure, we can direct it some, but it's mostly in charge. And when it goes wild, we have little control over our actions.

Cutting is not something to be ashamed of, in my opinion. It's a symptom of a larger issue and should be corrected if possible, but it's not a shameful act. It's a very powerful act of a person desperately trying to bring themselves in charge of their life again. Causing physical pain to oneself is a way to force the body and brain to go into a healing process. I can even tell you the biology.

Serotonin, that feel good chemical, is also the chemical used by the body to do wound healing (along with a host of other chemicals). Serotonin acts as a vasoconstrictor, that is, it makes the blood vessels shrink. This helps in two ways: it slows the loss of blood from the body and it closes access to the smallest blood vessels in the skin so that bacteria can't get in. As a side effect, it also is hugely calming.

The pain of the wound has to match the emotional pain inside. That's normal. What someone is doing is raising the serotonin level physically to be able to block out the emotional pain. That's nothing to be ashamed of. That was actually the scientific theory behind the Occipital Nerve Stimulator: if you can give the nerves enough stimulation (yes, it was painful) it can block the start and formation of the migraine.

When people are cutting, they are intuitively self-healing. That's nothing to be ashamed of. But it does scare people.

We don't need to be afraid of cutting. But it might be a good idea to find a way to create the same healing process in a constructive way. I frequently would use clothe spins when my hands were particularly achey. That pain and pressure of the clothes pins would allow me to relax my hands and stop the cycle for a while.

Similarly, I find that the pressure of water can be very soothing. This is actual science too, as discovered by Temple Grandin. Pressure in the body, like a hug or a bath, has a calming effect. Based on this science they now have hugging machines to help people with conditions like Autisim.

Cutting is something to be concerned about (for health reasons), but cutting is something that is intuitively natural. It's not something to be afraid of.

If you want to help yourself or someone else, I would suggest exploring other avenues to get that same stimulation without causing bodily harm. Be very careful. Look for ways that are safe.

I will admit, I'm a fan of a technique called mummification. I use Vet Wrap, designed for sprained ankles. It's a self sticking bandage that causes slight compression when used correctly. Wrapping this around my whole body is the most relaxing sensation I have ever felt. I was able to reach a wonderful meditative state where I could look at any issue I had calmly and without fear or dread. I'll borrow the quote from the Order of the Garter: Honi soit qui mal y pense (Old French: "shame upon him who thinks evil upon it", or "evil to him who evil thinks").

Life is rough and frequently overwhelming. It's okay that we have limits. We're allowed to take care of ourselves in safe and constructive ways, unusual though they may be. The point is we're trying to manage our elephant as best we can. We're trying to get through hell. Life is like that sometimes, and that's nothing to be ashamed of. It happens to everyone, no exception.

The key to walking through hell is: Don't stop.

*There is a TED talk that mentions this Elephant/Rider theory: Stefan Sagmeister: 7 rules for making more happiness. Go to time marker 3:30 if you want to skip ahead.

Wednesday, July 13, 2011

Neurontin Redux

So my new GP has started me on Neurontin 300mg 3xD (I hate three times a day---so difficult to remember that middle dose, but I can do it)**. I wasn't expecting it, but since my first dose, I'm now worried about sleepiness. My body is telling me it's nappy nap time, and honestly, I haven't been awake that long. And I've had a Red Bull. You do the math.

I've taken Neurontin before for my migraines. That time, it was ineffective until I got up to 2700mg a day (that's close to three grams), then it did the strange thing of working for 3 days and then not working for 3 days. That continued for three months until it quit entirely, and I had one episode where I told my husband to hide the guns. Part of me was in utter despair, the other part was like, "what the hell? life is good right now... nothing's really wrong... why do I feel like this?" Then it stopped working, I came off it, and my feelings returned to normal. Yikes! Luckily, I'm not at that level now.

I'm gonna have to call the pharmacist and ask if the side effects will fade and if so, how long it will take. He told me earlier today that it should be effective for my neuropathic pain in about 7-14 days (but my doctor would probably want to keep me on it longer before giving up if I found it didn't work).

I'm not so worried about it not working now. It's working. Nappy time.

But will it work on what we want it to work on without making me Sleeping Beauty? Jury's still out.

Phone call. Then nap. lol


Well, it's not gonna work on the migraines, that's for sure! Surprisingly, I love what it's doing for my mood. It's giving me longer time to think clearly before I open my mouth. I'll stay on it for that reason alone, regardless of what it does for my pain! Hopefully that desire won't complicate pain treatment down the road. Like my body isn't a black box enough... Ha! (Black box is a programming term where you're testing a program for functionality, but have no idea what's going on underneath.)

At Microsoft, we had a saying, "you're turning a pig into a porcupine..." The story was: say you've got a three-legged pig. You build a prosthetic leg. It works okay, but you want to do better. You add another prosthetic leg, and another, and another until the pig looks like a porcupine. It's the idea that just adding stuff to fix a problem can end up being a problem of its own.

So, lots of stuff to deal with (not being able to drive is not constructive to my life, but that may pass) and lots of stuff to think about.

My pharmacy is in my corner. I hope to bring this doctor in as well, but it's a courtship. He's only met me once and has now had two phone calls from me. One to get me on the medication (he forgot) and now one saying essentially, "Whoa, nelly! Too much!" I can only hope he sees me as responsible and not a bother. I don't want to be overwhelimg with my information, but I don't want to be seen as withholding either. I also want to use my medication safely and wisely.

If I were into recreational loopiness, this would be pretty awesome. Me, I'd rather pay for the amusement park ride. I am not of the opinion that my body is a chemical playground. No thank you. One, I'm fragile. Two, time and a place: having a beer at a birthday or wine at Thanksgiving and Christmas, sure. Maybe a margarita with 'the girls' after a particularly stressful week. But not all the time. Especially since I need to keep a close eye on my symptoms. I like and need to have my wits about me.

**Doc has lowered me to 2xD. Awesome.

Until then. Nap time.

Monday, July 11, 2011

The rapacious randomness...

One thing I positively loathe about my disease is just how effing random it is. Not just day to day, but hour to hour. It makes planning a nightmare. Sure, I can set dates. That's just a promise. Doesn't mean when the time comes I have the resources to meet that promise.

When I wake up in the morning, I stake stock immediately. How did I wake up? Was it natural or jarring? Was there urgency because I'm not feeling well? Was it difficult to get up because I'm not feeling well? How do I feel emotionally? Am I depressed, anxious, or neutral? How's the temperature? Am I hot or cold? Can I tell where my hands and feet are?

I then have about an hour, two hour window before my body wakes up. Most people start producing cortisol a few hours before they wake up. It builds in your system and just about the time your starving for breakfast is when it peaks. I wake up by adrenaline. I sleep very deeply and have difficulty waking up. But eventually my body realizes it's in distress and I'll wake up with a bolt. That sends me into a rush to the medicine cabinet where I take my prednisone, thyroid med, flornef (another steroid) and anti-nausea med.

I absolutely require the antinausea med because quite frequently my stomach decides to atrophy and just not digest things. When that happens, my meds don't get into my system. I'll get shakey but will feel like I'm moving through molasses. It's difficult for me to think and make decisions. I get really, really cold to where I still need a hot shower on a summer's day to warm up. My hands and feet will feel like ice to the touch (one of my common symptoms as a kid). My heart will beat irregularly and my blood pressure bottoms.

Emotionally, it feels like the world is ending. Which isn't too unreasonable in my mind... Because in terms of physical health, it's completely true. If my body isn't producing cortisol and I don't take my prednisone, I could die. I've got an emergency shot I carry with me at all times in my purse. If I start vomiting or experience trauma (car accident, etc), my adrenal glands are supposed to produce cortisol like crazy. Mine can't. It comes in a shot.

After that two hour window has passed, I take stock again. How am I now? Do I have pain, and if so where's my pain? Can I eat yet? What's safe to eat? With food, I can generally tell by smell and by thought: if my stomach flip-flops, that's a no. Not no doesn't always mean yes, however. I can still get sick on something that sounded like a good idea at the time. That can turn a morning into an afternoon really fast.

If I'm somewhat bodily stable, meaning I've eaten, pills are in my system and working and my pain isn't slowing me down, I can then make or keep plans of the day. I usually do things short notice, as I don't like broken promises on my watch. Doctors appointments are another story and I'll push as much as I can, but I always make afternoon appointments to give me that wiggle room for self-maintenance.

I watch the weather religiously, as I know storms and pressure changes lay me out. I get migraines that turn me into a zombie. And/or I get body pain that makes me feel like my body is filled with sand, or hand and foot pain that feels like lightning and burning.

I try to schedule appointments around the weather, but I'm not always so fortunate. This spring and summer monsoon in Denver has kicked my @$$ I've become isolated and out of touch with my local, in-real-life friends, and that's miserable to me. I'm partially an introvert, but I'm an extrovert too. I love small gatherings of arm-chair philosophists and political advocates. Facebook helps, but it's no substitute for real people.

I'm literally a fair-weather friend: it the weather isn't good, I can't be there. People think they understand, but so often they don't get that I feel and before during and after the storms have passed. Most folks tend to think along the lines that I'm made out of salt: as long as it's not raining I shouldn't melt, right. Not quite, unfortunately. Those red and blue fronts that sweep through an area, the switch-out of high and low pressure systems... I feel all that physically. Its the roller-coaster of randomness I have to ride.

It reminds me of the Police song:

First to fall over when the atmosphere is less than perfect
Your sensibilities are shaken by the slightest defect
You get so dizzy you've been walking in a straight line
You live you life like a canary in a coal mine
Canary in a coal mine...

What else can I do? It's my reality. I'm working to make it better, but in the meantime, it's sill a wild ride.

Sunday, July 10, 2011

"Hurry up & wait..."

As a former military wife, I'm completely familiar with the concept of "hurry up and wait." There's a flurry of activity, then a long, grinding, wait period as things behind the scenes fall into place. It can be agonizing. Things don't happen in Hollywood time. Just because there's a cure doesn't eliminate the process. Doesn't change the business cycle in the slightest.

Still, it's really difficult to keep that perspective when my suffering is RIGHT NOW. It's difficult for people on the outside to understand because they can't see the pain and distress that's causing my urgency. I have to give myself mantras that "I'm not going to worry about X until Tuesday" (or whatever) so that I don't make the waiting worse.

Even with the promise of a cure, there are hoops to jump through. I've been particularly non-active with my health care for a long time because there was no point. Now that there is, it's still a grind to get to the solution.

What's so frustrating is there's absolutely nothing I can do. I feel like a little kid staring at all the presents under the Christmas tree but I've still got hours until my parents wake up. All that glittering promise and I can't have any yet.

The adult side of me is cautious. The cure is steroids and an immunosuppressants. I've already been in and out of the hospital before with the antibiotic resistant form of staph: MRSA. They nearly lost me once. That's not something I care to repeat. Being on an immunosupressant is going to make me susceptible to everything contagious. And I already have a low resistance to such things. That terrifies me, especially with no financial means of arranging a clean house.

Before I knew there was a cure, I could trudge along just enduring best I could. Now I've got to throw myself back into the process again. The potential outcome is completely worth it. But the road there is fraught with peril. So much can happen between now and then. I continually remind myself to take it one day at a time. Sometimes, one moment at a time.

The key to walking through hell is, don't stop. I've found the sign marked "Exit." Now let's see if I can get there. I have a week to wait to hear about my referral to a the only adult neuroendocrinologist for 3 states. Then I get to wait for an appointment, which could take from 9 months to a year (if last time is at all telling). Pituitary tumors come first, and with only one neuroendocrinologist in the state... well... there's gonna be a wait.

I've just gotta keep stubborning it out in the meantime...

Tuesday, July 5, 2011

"The fair is in Puyallup..."

That was the saying of a great couples counselor my mother and I went to in Seattle. What he was implying was that this is an unjust world, and the only fair you'll see is the County Fair. I bring this up because I've already noticed the beginnings of survivors guilt in me.

I'd gotten used to the idea of being unlucky. I had to. That was reality for a while. I couldn't allow myself to hope. It made the despair worse. It shattered my faith in the God of my youth. And no, that hasn't been restored because the truth is millions suffer around the world every day still. Billions have died throughout the ages waiting for their cure. Some young, some old. Of every color imaginable. Disease is completely unbiased. Oh, sure there are tendencies... But there are also plenty of us Medical Unicorns too.

The fair is in Puyallup. My faith is in Time. And that faith, though agonizingly difficult at times---yes, I've been suicidal... had to tell my husband to hide the guns once---my faith in time has paid off. Sometimes things got worse, but the wheel turns for everyone, high and low born alike. We all have moments of joy. We all have moments of despair. We all have dreams. And no one has ever gotten *everything* they wanted (we were all kids once). No one gets through life unscathed. No one is immortal. Hearts break.

But they heal too.

I'm never going to be the same Pam that I was. There's no goin' back after something like this. But it hasn't been all bad. As a gamer geek, I used to grumble that the GM (God) was only letting me spend experience points (my time & energy) on Wisdom and non one Constitution (health). That is to say, I've grown incredibly wise in a short amount of time, but my body has suffered tremendously for it.

This path is not the way!!! If you can get there more comfortably, I sure as hell advise it. It's still gonna take me years to recover from the psychological damage.

I may choose to do a Shoah (Jewish tradition of testimony by survivors of tragedy) on a more broad scale, once. Otherwise I'm gonna stick to this and live a quite life. I have a chance to close the door on this. I have no qualms doing that. I can turn my back on it. Move forward again.

I don't feel trapped anymore. I can't dance like I want to yet, but I can feel in my soul that it's possible again. I've got a *future* to consider, and that's a weird feeling. It's new.

I have the treatment to go through, and recovery from that. I'll still have to play things by ear for a few years yet. And thank goodness because I have no idea what to do with myself! But I get to think about it again. I wouldn't before because it hurt too much. I knew my wants were just coming out as what I lost. I couldn't conceive of what it would be like on the other side. And I was absolutely right not to guess!

I made the mistake before of thinking I knew what chronic pain was. I had no idea. I'm going to brag for just one tinsy second... I have empirical proof as to the insane level of my migraines. I was in a scientific study for the Occipital Nerve Stimulator. Everyone in the study (according to my doctors) used the device between 4 and 8. That's milliamps of current applied directly to the nerves. I was the only one in the study who used the device at 20. My migraines would go past that. They gave me an extra charging device because I'd drain the batteries so fast.

And still, there was one time I had to back on narcotics. It was during a hideous wind storm in Seattle. I'd run my device full blast for a week. But my muscles started seizing until one morning I woke up vomiting and I couldn't stop. During a small window I put in a call to my doctor and she rushed a prescription. I had an authorized friend get the script to the pharmacy and the medication to me. I meanwhile relaxed in a hot shower, in god-awful pain, but no longer vomiting. (At that time I ran my medications on a night schedule for this very problem. It was more regular than it was safe to think I could stomach pills in the morning. That changed with the addition of medical marijuana last year.) So yes, I can safely say my pain was pretty epic. I won't say it's the worst, because I haven't yet passed out from pain, but I've certainly been unable to pass out due to pain. I think Hyperbole and a Half would put that somewhere around "I am actively being mauled by a bear." Only the bear was my own immune system attacking my brain. Yeehaw!

I don't know about you, but I sure as $#!+ want someone to shoot the bear. That's not drug seeking. That's pain avoiding. But from the outside, when no one else can see the bear, it looks exactly the same. *sad sigh*

It's not fair that I got this disease. It's not fair that I have a chance to get rid of it either. And I have NO IDEA what I'm going to do with this second chance. Lol

A quiet life of simple blessings sounds DELICIOUS.

Saturday, July 2, 2011

Can azathioprine fix me???

This is insanely hopeful. I actually have a reason to go back to my doctors beyond managed care!!!!!

Recurrent autoimmune hypophysitis successfully treated with glucocorticoids plus azathioprine: a report of three cases;

I have something to fight for... oh, man, this sets new wind in my sails. I guess it was a wise decision to take that break! ^_^

Azathioprine is kind of a scary drug, as it may increase my risk to infection, and I'm already a high-risk category, but it's worth the chance at a cure!

This article was just posted a week ago. Such good news!!!