Fighting Bitterness

As I began to look back on 2012 and what I've achieved, I have to admit, it's been a pretty phenomenal year. But suddenly, I was thrown into cognitive dissonance. It's been an amazing year!! So why don't I feel amazing? I struggled for weeks wondering why. I realized that I'm full of bitterness. Full-to-the-brim angst that would put the Grinch and pre-reformed Scrooge to shame. I had to ask myself, what gives? It's all been progress. Why am I still miserable?

It took a while, but when an old friend contacted me, it all came rushing back. Yes, this life is VERY successful, given what I have to deal with. But it's a second-hand life. It's not my primary life. I had that life. I was amazingly happy before this all came crashing to a head, changing my world forever. I had to leave the one place I called home, because the climate there was triggering epic levels of pain, both for my migraines and my neuropathy. That, and all but two pain clinics were pressured to go out of business, and the last to were being pressured to not use narcotics at all. And I need narcotics. My home cast me out. It broke my heart. I still haven't recovered from that.

When I visited Seattle to hook up with my old doctor to see if she could help, it was like all this tension just melted from me. I was relaxed. I was joyful. My spirit was uplifted. Until, of course, towards the end of the trip when the pain started to seep in again. Then it broke my heart all over again. I love everything about Seattle, including the ever-present rain and the terrible traffic. There is a celebration of the individual in Seattle that makes it so no one has the right to judge. To each their own! And glory to it. That was home. I wanna go home. And I can never go home.

I've found where I need to be, and I need to find a way I can make peace with it. However, it seems the more I learn about the character of my new home, the more I don't like it. I've met a few spectacular people, but on the whole, I am not a fan. I'm sure that to several thousands of people, this place is their home. Just not me. And I struggle to fit in, in a place I don't wanna be. Do you think Adam & Eve were able to get over getting kicked out of the garden of Eden? Because it feels like I was kicked out of paradise.

I loved my life. LOVED it. It wasn't perfect, but it was wonderful, and filled with wonder. Ten years later, it's as if I'm waking from a crazy nightmare, only to find that everything that was familiar and comfortable is gone. I can't dance. I can't even be around the music to dance. I can't paint. I still have the skill, and my ability has even improved, but I can't hold a paintbrush long enough---my hands, they betray me. My body betrays me. It has taken what gave me joy and perverted it into an exercise of torture. I can't even get too interested or excited about a subject, lest I blow a migraine. I feel like a butterfly in a bell-jar, beating my wings against an invisible force-field, unable to fly.

I knew what made me happy. Now I can't do any of that. And I can't figure out what to do in its stead! I wouldn't feel so robbed, if I could replace it with something else. That, however, is easier said than done. I spend 30 years figuring out myself and what I wanted. Now, most of that information is pretty useless, if not downright hazardous. I have to come up with an entirely new list of things to make me happy, and I don't even have a clue where to start! Thinking about it sure doesn't help, because all it turns into is rumination on those things lost to me.

Certainly, I don't want to live mired in bitterness, unable to enjoy the success of 2012, but I don't know how to fix this!! Halp!

Stocking Full of Coal

Many of you know, I suffer from a rare pituitary disease, for which there are less than 500 people with the disease. This is why I call myself a Medical Unicorn. When I got the diagnosis, I figured that my disease was so rare, there was no possibility that there would be a cure. There just aren't enough of us for it to make a difference to even try to find a cure. There's certainly no money in it. But then, it happened! They stumbled upon a cure, in the process of trying to fix something else in a patient. I've been trying for the last year and a half to get that cure.

My chase for the cure started with me moving to the Denver area. Doctors who study the pituitary gland are called neuroendocrinologists, and there aren't many of them in the country. There was one when I lived in Seattle, and they were the ones who originally confirmed my diagnosis. But Seattle is way too expensive a town to live in, and after my ex-husband suddenly cut off my court-ordered spousal support, I had to move back home to St. Louis. However, I quickly discovered there wasn't a neuroendocrinologist for a 5-state area. I was shocked. I was sure there would be one at Washington University, but no. So after exhausting everything I could do in St. Louis, and with the help of mt father, I moved.

It was a struggle getting an appointment with the neuroendocrinologist in Denver. At first they told me they wouldn't let me in because the University Hospital, with which she was affiliated, wasn't taking any more Medicare patients. I had my old neuroendocrinologist in Seattle fax over my MRI that showed the inflammation of my pituitary gland. That got me in.

But then, the neuroendocrinologist here took one look at me and decided that all my doctors of the past 10 years were quacks, that they had misdiagnosed me, and that all I needed to do was to come off my medication and I would be fine. She said that my thyroid problem was caused by another autoimmune disease, and it would show up on her tests. Well, it didn't. All my test came back proving her wrong. But did she change her stance? No. She still insisted I could come off all my meds and would be fine. She never said what was causing my thyroid to not work, since I came back negative on all other autoimmune disorders.

I tried switching to another neuroendocrinologist, a resident in training. However, since their scores are dependent on the exact person who dismissed me... Yeah, I didn't get any further except to keep having them spin their lies at me. At one point, I got the resident to break down and admit that they weren't going to do anything for me. I was devastated. I had the disease, I had the cure, but I couldn't get access to it.

Then, a miracle occurred. I couldn't have wished for better. My endocrinologist, the woman who had diagnosed me, and had send me to the neuroendocrinologists, was herself promoted to that very same position!! Gods be praised, I was overjoyed. I wouldn't have to prove anything to her, she was there! She was there when my disease went into remission, and I was able to come off all my meds, and she was there when it came back. It was a homecoming.

I couldn't afford the trip on my own. So I held a fundraiser, and my friends and family came out in support. I was able to make the trip to Seattle and reconnect with my old doctor. She hadn't heard of the cure, but she was able to look up who was involved in the study, to try and get the correct dosage and protocol I would need to go through to cure me. We waited for an answer.

And waited.

And waited.

I called her office today to see if we'd had any luck. Only when I get the pre-recorded greeting, it tells me that my doctor is no longer in practice!! I got no letter, no warning. Nothing. Like a stocking full of coal on Christmas morning, I'm beyond grief. I have no idea where to turn now. I can't afford another trip to Seattle. Her replacement will be a stranger who also may not believe me. Doctors don't believe in medical unicorns.

There's a cure, and I* can't get it.

She left her practice, and didn't tell me.

Who do I turn to now? Where do I go? What do I do?

How do I get what I need?

F.M.L.



[Edited to add:]
* I should actually say WE can't get to the cure. I know of two others (Hi Jana & Cathrine!) who share my disease and who's doctors are looking to me and my results before trying it on their patients. I'm leading a charge here, and I feel like the wind has been knocked out of our sails.

Please, if you have any insights... share them. Pass the word along. THIS CANNOT END HERE!!

[Edited to update:]
Never mind!! I found A Diamond in the Coal!!!

Happy Birthday, Make This Look Awesome!

Happy birthday to my blog! It's been one year since I've started blogging, and what a year! I started this blog as a woman hopelessly lost, and looking for answers. I was in chronic pain: an aching, burning, and hyper-awareness of sensation in my hands and feet kept me crippled and miserable. I hadn't exercised in ten years. There was no cure for what I was going through, and no one seemed to be able to help me. So I decided to turn things around, and teach other people how to go through my situation. I asked myself, "If I had to help someone like me, what would I say?" And I started writing...

Since then, it's been miracle after miracle. I thought I was alone, which was a reasonable thing to believe. There are only around 350 of us with this disease. How difficult was it going to be to find another person my age with this disease? Someone who I could talk to and compare notes with... There are over 900 million active users on Facebook. That's like looking for a needle in a haystack of needles! And then I found my Unicorn Sister... a woman my age, with all the same symptoms, down to the elusive pain that was being dismissed by all our doctors. I was no longer alone, and when I wrote my blog entries struggling with my life, she would write me little notes, like, "I feel like you're inside my head, writing just for me." Oh, how that warmed my heart and made everything awful I had been going through worthwhile!!

I also had several things happen, which I though I would never see in my lifetime. A CURE!!! My disease is rare. There aren't fancy ribbons or marathon walks for Autoimmune Hypophysitis. Most of my doctors had never even heard of it until I walked in their door. People with diseases like mine don't get big, fancy, superstars like Venus Williams (Sjogren's Syndrome) or Lady Gaga (Lupus) to speak for them. We don't have collection jars next to the cash register. No one cares! Why should they? Cure cancer, and that would affect millions. Cure Autoimmune Hypophysitis, and that's maybe 400 people. I thought I would die of this disease. I thought it would be the eventual cause of my death. And then there was a cure: Two small observation reports (because there are even too few patients to have a study) showed that a combination of azathioprine and advanced steroids for 16 weeks, eliminated all traces of my autoimmune disease.

I was having trouble with doctors back then. First, I couldn't get an appointment to see the specialist I needed. Then, after seeing the local specialist, I ran into a lot of trouble. She didn't believe I had my disease, and thought that if I were to come off my medication, I would be fine. I had further problems where the tests that were supposed to be ordered, never were. But even after tests were completed and showed abnormal results, she still refused to believe I should be on any medication. I thought I had reached a dead-end. I tried going to another doctor at the same clinic, but she was a fellow, and this other doctor was a teacher, so not much happened there but more friendly stonewalling.

But then, my old endocrinologist---the one who had seen me during my original diagnosis---she got promoted to head of neuroendocrinology at Swedish Hospital in Seattle. As I told my roommate, "I couldn't have wished for better!" I knew I had to get back to Seattle, and I had no idea how I was going to afford it, but then all my followers pitched in, and I was able to go. I was able to meet with my old doctor and establish myself as a patient of hers again. She hadn't heard of the cure, but she's in the process of researching how to go about doing it, right now! She found one of the authors at Stanford, and she's waiting to hear back from him.

In the meantime, Dr. Broyles reminded me that I had an old MRI in my file, that if the neuroendocrinologist had just bothered to look at it, she would have seen my pituitary inflamed, and I possibly wouldn't have had to go through all that trouble of trying to prove I-had-what-I-said-I-had. I'm still working with Hospital Administration at CU on that one. I'm also working with hospital administration at a different hospital, for missing two 7mm kidney stones, and misdiagnosing me with PMS. Whoops. That was a huge ordeal that I'm still trying to manage (I need to get me a better way to tip upside-down). I'm also waiting to hear back from the Stone Center of the Rocky Mountains to see what sort of diet changes I can do, to prevent them reforming in the future.

Finally, and certainly not least, I got pain control!!! This was another big one that I thought would never happen in my lifetime. For one, narcotic pain killers just aren't that good at killing my pain. They work wonderfully on some things. But for the daily pain I was experiencing, they were terrible. I could get overwhelmed by the wooziness of the narcotics, and still be feeling that impossible burning in my hands and feet. Narcotics didn't so much take care of the pain, as they did not make me care about the pain. So, even if my doctors were willing to give me narcotic pain control, I knew it would always be incomplete. I knew it would always hover there in the back of my consciousness, no matter how blotto I got. I had hope of maybe finding a sweet spot where the pain wouldn't cripple me and the medication wouldn't either, but that meant getting approved for long-term narcotic care. Not something easily given in this day and age.

My GP started me up on Neurontin again: last time I had used it for the migraines, and it had stopped working altogether. This time it was for the nerve pain, and it seemed to help some. But I did have the scary experience of my first seizure, when I made the mistake of trying to ramp down too quickly. That, along with another medication, kept me going enough so that I could keep going to doctors. I went to a neurologist, who was finally able to diagnose my pain as small fiber neuropathy. That diagnosis, along with steps I took myself (willing to do physical therapy), finally got someone to take my pain seriously. The first pain clinic I went to was not able to treat me, but I was able to find another clinic, and there I ran into the wonders of methadone. It was like someone attached a light switch to my pain, and simply turned it off. Nothing short of a miracle.

Throughout this all, I have been involved with counseling to help me with my Medical PTSD. I'm terrified of doctors, because I've had some very bad things happen to me at the hands of doctors. The greatest of which was a MRSA infection, which almost killed me in 2008. Through counseling, medication (#headmeds), and progressive success with my doctors ("progress, not perfection..."), I was able to really bring my anxiety under control. Oh, I still have my moments... but I know that they are moments that will pass. Even though my body is not a safe place to be, I can still manage it well enough that I know I can make it through. Though I may experience catastrophic moments, (like an adrenal crisis while camping), I've got the skills and support where I know I'll survive. Yes, I am going through life experiences that are terrifying. It's reasonable for me to lose it every once in a while. So long as I don't lose it on anyone else, that's okay. I can be calm in my doctors appointments, explain myself so that I'm heard, and get the treatment I need. If I run into a doctor that refuses to treat, it's not the end of the world. I can start over with a new doctor, and eventually find someone who can help me get better.

I didn't entirely believe that I could get better at first, but I carried that belief with me, until it came true. I was hoping for enough pain control, and I got even better. I was hoping for management of my autoimmune problem, instead a got a cure. I was hoping to deal with the loneliness my disease, instead I got a sister to share with. I thought I would struggle to return to work, and then I found I'd already started my life's work, right here.

Ya know... I think I might just stick with this blogging thing. It just might be good for me! ;^D

Thank you for joining me in my incredible year.

#HAWMC - Day 25 - Third Person

Think of a memory you have – and write to recreate it. But, inside of going into it as yourself, go into the story as a narrator. Describe your memory using the third person as if you were a character in the story instead of the one telling it. As you write, use as many sensory images (sights, sounds, textures, etc) as you can. Don’t use “I” or “me” unless you include dialogue in your memory.

The familiar strains of a beautiful song ran through her head. "Oooohhh sometimes... I get a good feeling. Yeah." The cool night air played against her sun-burn skin. "I get a feeling that I never, never, never, never had before, oh, no. I get a good feeling, yeah. The song had been running through her head for a while now. She had noticed her mood was improving greatly, and this worried her. Promises of better days ahead and hope for a brighter tomorrow was often something that left her disappointed when the darkness remained. Hope wasn't a guarantee. Nothing in life was, but death. But even those morbid thoughts couldn't shake her mind from the obvious truth: she felt better.

It had taken a lot of work to get her there. She was on four different medications for pain, two for the chronic nausea, and three to keep her alive. She was also on a head med, because tough times are difficult to go through, and the quick thought entered into her head, "What if I could come off of that too?" But then she quickly corrected herself, "No! Don't think that! Mustn't think that! No getting hopes up! Hopes hurt..." And she pushed the thought from her head before she could day-dream about it. If that day came to pass, it would come to pass. Anticipating it didn't help.

"Oooohhh sometimes... I get a good feeling. Yeah." The combination of drugs was working, and it wasn't a combination of drugs that was going to affect her thinking. Hallelujah! This was better thank what she had hoped for in terms of pain care. Her case had been so difficult for so long, forcing pain doctor after pain doctor to tell her, "I'm sorry, we have nothing left for you..." But an old medication that had stopped working had started working again at a lower dose, and a breakthrough in her diagnosis had led to the discovery of two other pain medications she could use. Now all of this in combination had her blasting through limitations she used to have before and waking up the next day not much worse off than the day before. It was almost like being healthy. "I get a feeling that I never, never, never, never had before, oh, no. I get a good feeling, yeah.

Granted, it had only been a week of activity on the new medications, but what a week! Every day was used for activities. That was unheard of. She was traveling and not falling apart at her destination---a ten-year first. If she could keep stringing together days like this, she'd be a force of nature! Physical therapy had already been going well for a month, but now she could tell her therapists to really push it---she had endurance again. "Oooohhh sometimes... I get a good feeling. Yeah." It had been a long, hard climb, but things were finally looking... (what was the word she was looking for?) ... manageable.

She'd known that she hadn't looked sick for a long time, but now she was beginning to feel it consistently... reliably... even under very taxing conditions. Things were starting to look somewhat normal again."I get a feeling that I never, never, never, never had before, oh, no. I get a good feeling, yeah. She'd been working at home at a steady pace and was starting to trust her ability to manage her symptoms so that they were completely invisible. She was starting to be able to behave like a really, real adult again. That's what was helping her mood the most: being able to be responsible towards herself and other people again.

Yeah, that was a good feeling...

#HAWMC - "What if there was a cure?"

Oh, today's writing assignment is ironic... I'm supposed to write as though there's a cure for my disease. Interestingly enough, that actually happened to me. Only my disease is so rare, there can't be a clinical trial for it. I just get to try it. And I just finished up my Seattle trip with the doctor who is going to potentially arrange it. I'm waiting to hear back from her on when we get to start. Right now she's getting information from the people who wrote the article on the cure, to see what dosage we need to put me on. If all goes well we'll set a date to start, 16 weeks later I will have survived the treatment, not gained an excessive amount of weight on the advanced steroids, and be without any traces of my pituitary disease. I'm *still* in shock and awe. I never thought it would happen in my lifetime, or to me, or to a disease so rare!

Ironically, I was in a full-blown passive suicidal ideation phase at the time, when I got the news. I was angry and frustrated, but I had already started this blog, and my goal here was to not give up. My whole purpose for this blog was to figure out how to make a slow, painful slide into the grave something that I could endure. I was going to put a brave and cheerful (but not sugar-coated) face on, and teach other people how to go what I was going through, so that I could in turn, teach myself. My mother, bless her heart, had some good wisdom. One piece was: "The best way to learn something is to try to teach it to someone else." And she's been right about that one my whole life.

When I was tutoring other kids in math, my math got better even if I wasn't in the same class as them. When I started teaching other people how to get through the god-awful emotions that come along with chronic illness, I got better at getting through my own. One clear sign? I've needed less therapy and my psychologists (I see one for meds and one for talk) both say I'm doing really well. I've graduated to phone conversations, as needed, for my talk therapy. My medications we're not changing, because I'm stable on them. I see my prescribing doctor once a month. And this was all before I got news of a cure.

Since then, I also found another woman with the same disease as me, someone my own age whom I could compare notes with... I also thought that would never happen to me in my lifetime! She is, like me, a medical unicorn. We have surprisingly more in common than either of us could believe. She is my sister in this disease---my unicorn sister. And though I am sad she has to suffer like I so, I am ever so grateful for her company. It is a really big deal to no longer feel alone.

It's an even bigger deal to have all my symptoms validated through her near-identical experience of our disease. See... they don't know much about what is normal and a part of our disease and what isn't. With only around 350 cases known, it's kind of difficult to tell what's going on. Additionally, there are sub-types of the disease depending on how the disease was caused, and what part of the pituitary the disease strikes. So it's really difficult to know what's what! But she and I are so parallel, we're both starting to think this is all tied to the pituitary disease. (It's the only biological thing we have in common!)

So for today's prompt, I don't have to imagine. I've been blessed. I get to live the dream. There is a cure. My doctor knows about it. She's researching the protocol for the treatment for me, as we speak. We can get rid of my (potentially deadly) disease, Autoimmune Hypophysitis.

I will probably still have the nerve damage I have, but it will stop progressing. I may even get rid of my chronic migraines! But I find that highly unlikely, based on my migraine research. Migraine brains are different than other people's brains. However, the migraines may decrease in severity and frequency, since the attacks on my pituitary will stop. It's reasonable for a brain to be in pain when part of it is under attack from the immune system. So logically it would follow that if the attacks stop, the pain will stop. It's not a guarantee, but it's a hope, I admit.

In the meantime, I'm full steam ahead on my physical therapy, and I'm improving slowly but surely. My new pain doctor has several options we can try to bring my nerve pain under control, and so far, *fingers crossed*, it seems to be working. Yesterday should have been a really bad flare day, and I did remarkably well for me. Yes, I had an episode, but it was a lot more manageable than in the past. All of this is progress I could not have dreamed of a year ago.

My case is not normal from the word go. People don't get diseases this rare. Cure's aren't found for diseases this rare. Cures aren't found for things like brain diseases. Cures aren't found for autoimmune diseases. None of this should have worked out the way it did. There is DOOM written all over my scenario. And yet, just as dramatically (which makes it even more unbelievable), the miracle happened anyway.

This just doesn't happen. Real life does not play out like this. Not even a Hollywood writer would try to make a story-line like this. It's nuts!

And yet, completely, factually true.

#HAWMC - Writer's choice! - Seattle trip update

I met with my new/old neuroendocrinologist, Dr. Broyles, yesterday in her downtown office. New, because I'm establishing care with her as a new patient. Old, because I was her patient from 2005 to 2008. It was wonderful. She even reminded me that one of my MRIs had shown inflammation in my pituitary stalk, and that this was further evidence of my diagnosis of Autoimmune Hypophysitis (lymphocytic hypophysitis). She hadn't heard of the studies about the cure that I was talking about, but she was excited and was going to read up on it. She also had a drug she was working with, that they don't even have studies out for yet! This trip was well worth it!

She took one look at my results from Colorado University, and was appalled: "And they tried to tell you this was a normal response?" She even had a follow up question: "Do you know what the strength of the injection was? Were they using..." and then it turned into scientific jargon I don't remember. But Colorado University didn't even mention there were two possible injection types. You'd think if they wanted to prove all my previous doctors were quacks, they'd at least cover their behinds. I'm going to have a long conversation with their hospital administration when I get home.

So the plan is, she's going to look over the studies, pull up all my old information (some of which is in archive) and give my case a good, thorough looking-at. She's going to contact the folks who ran the studies to see what levels of the medications they used, and see if it's a protocol we want to try. We both know that the protocol is really risky---we'd basically be pushing my immune system as close to off as we can get it for 16 weeks. That's a big deal. It will be like when cancer patients can't be around anyone so they don't catch accidently catch a cold and die. I will have to be super, super careful. And high-dose steroids means around 100mg/day. YUCK! I will be starving all the time, my skin will hate me, and oh, my poor emotions! It will be hell.

But if the studies hold out... if this shows that it really can reset my body and eliminate all traces of the disease... Sixteen weeks is nothing. It takes forty weeks to make a baby. I will do what needs to be done. She took a bit of blood to see where my renin levels are at, check my thyroid and other basic things. Things move forward from here.

Oh! So exciting!!!



[Other posts on my Seattle Trip]

[The back-story in chronological order:]
Trying to get an appointment in Denver
My discovery of the paper on the possible cure
Got an appointment!
CU Neuroendocrinologist not looking so good
Looking worse now...
And still worse...
But wait? A glimmer of hope?
Nope... no such luck...
Maybe if I switch doctors in-house? No....

#HAWMC - Superpower day

For today's #HAWMC writing prompt, I am supposed to choose a superpower and how I would use it. With the amount of nervousness I'm feeling about my trip to Seattle tomorrow, I would choose teleportation! Wouldn't it be wonderful to be able to go somewhere just by wishing? Instant travel so that there's not all this hassle of packing, getting a ride to the airport, dealing with the flight, on and on... It's an annoying activity for most healthy people. But for chronically ill people, it's even worse! If I leave something important at home, that can spell disaster. The travel itself is also physically exhausting and pain-causing. Teleportation would make all that agony go away.

For those of you just tuning in, I am traveling tomorrow to see my old endocrinologist in Seattle. She was recently appointed to head of neuroendocrinology at Swedish Hospital there. A neuroendocrinologist is an endocrinologist who specializes in disorders of the pituitary gland. And I happen to have a pituitary problem! Autoimmune hypophysitis, to be exact. She's one of the doctors who was present when I got that diagnosis. There's no need for me to worry she won't believe me (unlike my local neuroendocrinologist). I am meeting with her to establish myself as a patient again, and then make a plan get the cure.

Yes, it's an experimental treatment. But it has to be: there aren't enough people with my disease to even run a proper study! I'm hoping she'll be able to contact the authors of the paper detailing the cure, find out specifically what they did, and then tell that to my doctor here in Denver so I can go through the treatment. From what I can understand of the paper, it looks like a 16 week treatment, and then the pituitary disease should be gone.

That won't leave me 100% cured, unfortunately. There's still the damage to my nervous system, that's not going away, and will need continued management. I'll of course still have the scars from my surgeries. I'll probably still get migraines (though there is hope these could be lessened or even eliminated). But the disease that can kill me, the disease that we think is the original source of all these issues, will be gone. We will be able to stop much of the deterioration of my body, and get me off a lot of medication. And I will be serving as a guide to my Unicorn Sister.

I have done all the planning I can. Everything is packed except the last vital things. I'm going to try and make a post for #HAWMC tomorrow before I leave, then the computer gets packed up. I have my paperwork in order. My reservations are set. Since teleportation isn't possible, I'll just have to settle for an airplane and rental car for now.

Responsible denial (aka: travel freak-out)

I always freak out about travel, whether it's twenty minutes away by car, or two hours away by plane. With the car situation, I'm always worried that I'm going to leave something at home that I'll need because of a symptom flare. Then, because I don't have it, I have to call the evening short, turn around and go home. If I can go home, depending on how bad the flare is... there's been more than once I've had to crash at a friend's house. I carry a dose of my morning meds with me at all times, for that reason. Plane travel. Wow. Not only do I not have the option of turning around, but the flight itself will likely cause a flare. And the humidity in Seattle will cause a flare, guaranteed (that's why I left!). Pain. Real, physical pain. And potentially an ER trip (if the last 4 times I've flown are to be trusted). This is my travel freak-out.

When I get in this state of panic, I will shut down completely, if I'm not careful. Not that I can't take care of myself, no... More that I'll lose hours just staring, my thoughts racing (or no thoughts at all), because the whole thing is just too scary. I'm going to talk to my doctor and see if I can't get some extra medication for that time. I can go back on the Relpax for the migraines. I have no idea how we're to address the neuropathy. Probably more Ultram so that I'm not bouncing around on higher, then lower, doses of narcotics. But I don't know it's going to be enough. I have to guess and hope I'm accurate. The worst the pain was in Seattle, it hurt to much to hold a pencil in my hands, let alone type. I nearly lost my mind, worrying I'd have pain like that forever. And now I'm volunteering to go back into that environment? I sure hope this works, that's all.

I'm trying to allow myself to feel the fear and do the right thing anyway, but feeling the fear at this point is not helping!! There's just one phrase, one sentence, that is in my way:

I WILL HURT.

That's enough to stop me cold. At that level of pain? Absolutely. That's terrifying.

This is why I am not anti-denial. Sometime, denial is a heck of a useful tool. If I can just block out the part past me getting on the plane here in Denver, then I can still get done what I need to get done, without worrying about what comes after. All I have to do is make sure I am prepared to get on that plan, and be away for a week. I can imagine I'm going up to the cabin, where I routinely feel better, from the higher elevation. I'd need to take the same preparatory steps. I'd just feel better about it, and in that way, I'll actually be able to accomplish it.

I'm aware that I'm fooling myself. That's the intent! I have to do this. The likely reality is scaring me stiff! I have to give myself some carrot. And I can't hang my hopes on this trip working out as my motivation. I need to be able to handle the disappointment if it doesn't work out, and compounding it with, "I did all that suffering! For nothing!" is never a happy time. Also, I don't know what kind of time I'll need to recover once I get home again, so rewarding myself with something at home could need to be put off. That will only make me doubly disappointed. Nope. It's just easier to trick myself into a good mood. I'll probably have a full panic attack once I get on the plane, but my counselor and I have prepared for that.

This is what I call, Responsible Denial-- when my denial enables me to be more productive, more responsible (obviously), and more compassionate to those around me. I go into denial that I'm in pain all the time. Sometimes, it actually works! Then I'm able to use less medication, get more done, and just live more of a normal life. Now, I have to be very careful. I don't want to ignore symptoms that are new, or unusually severe. (The latter is pretty easy, though... massive distress is usually urgent.) New symptoms need to be referred to a doctor. They're the ones who can tell me what it's about, how to manage it, and whether or not I need to worry. Responsible denial is a great tool, but I must never use it selfishly. It's about enhancing my ability to be responsible, not about avoiding consequences.

So... it's off to "the cabin," and now I actually feel like I want to make sure I have a good time. Doing the steps to make sure that happens is going to be easier now. I've even got a smile on my face.

And who knows? Maybe it could all work out... Perhaps my adaptation to high altitude will help me cope at sea level for a short while, because I'm getting so much more oxygen. It could happen! And I won't know until I get there... In the meantime, there's work to be done!

We are at 100% Awesome!!!!!

Thank you to everyone who donated!!! My trip to Seattle is ON!!!!!!!!!!!!!!!!!!!!!!!!!!

Donate for my trip to Seattle

As you may recall, my old endocrinologist has been promoted to head of neuroendocrinology in Seattle. She was the one who saw my disease go into remission and then reappear. There would be no need for me to prove anything to her; she was there. And now she's in a position where she could possible get me the cure for my autoimmune hypophysitis. The only thing standing in my way right now is affording the plane ticket. I was going to rely on my family for this, but the funds just aren't there. So I'm hoping, in a fishes and loaves sort of way, that if I get a little bit from everyone, it won't put anyone in too much of a hardship to help.

I'm trying to raise $449 for the plane ticket and rental car. I have friends I can room with, but transportation is not guaranteed. Many of the folks I know rely on public transport, and I am not healthy enough to do that myself, sadly. I can take care of food as I would have needed to eat that week anyway! ;)

I'm only asking for what I need. I will update the amount I necessary for the trip as donations roll in. When I hit my target goal (100% Awesome), I will remove my donate button.

[BUTTON REMOVED]
[March 3, 2012]

This is a huge chance to change my life. This is the disease that has the potential to kill me. And I would be paving the way for my unicorn-sister and her treatment as well. Any amount is welcomed. Thank you so much!!!

[Edited to add]
My appointment is April 6th. I'm flying out April 4th and returning April 11th for the cheapest flights.

Prices have changed for the better!! My roommate was able to find me a better deal online for car & airfare, so now I'm only looking for $449!

I couldn't have wished for better...

"I couldn't have wished for better!!" I told my roommate in shocked disbelief. "This kind of good luck just doesn't happen to me." I have an appointment on April 6th with my old endocrinologist in Seattle. She was just promoted to the head of neuroendocrinology at one of the hospitals where I used to be a patient. Talk about hitting the lottery! This is the woman who saw my disease go into remission. She was the one who worked for a year to get me to see an neuroendocrinologist in the first place. And now she's the head of the department?! Thank you for your prayers and well wishing, as they obviously have worked.

This blows my mind. When I say I couldn't have wished for this, I mean I really couldn't... not and still like myself in the morning. To make this happen, I would have had to find a way to make someone lose their job, just to put her in their place. I simply wouldn't do such a thing. I wouldn't even be able to pray for such a thing. But it's happened of its own accord anyway, and I am the lucky benefactor. Holy cow...

It's going to be seeing an old friend. I bet she's going to be so proud of all the weight I've lost. She never knew me skinny. She only had the pictures to go on. We even tried to get the weight off with phentermine, an ingredient in the now infamous phen-phen, but it stubbornly stayed. I bet it will be good for her to learn it was the prednisone dose I was on at the time. Oh, and I'll be able to got T3 replacement again because she's up-to-date on information like that. I'm absolutely giddy with excitement.

This is such a relief after dealing with that q**** at CU. This isn't a doctor who has to go on someone else's lab results. She was there. She ran the tests herself. She witnessed my transformation first-hand. I don't have to prove anything to her. I don't have to plead my case. She won't doubt me because she's the one who diagnosed me. I'm coming home, in a way.

There are many logistics to think about. I have to get from here to there. I have to stay there. I have to come back home. None of those are simple or easy decisions. My body has some very particular ideas on how it likes to be treated. Being thrust up to 30,000-ft in a pressurized cabin isn't generally on the list. Financial costs are another issue. The plane ticket alone will be at least $200, and that's a lot of money to me these days. I used to be able to spend that on dinner. Not often, but I could do it without it hurting. Nowadays, that's a month's supply of food if I'm careful.

Still... the work in front of me is an opportunity. Yeah, it's scary and looks overwhelming. Travel is a big deal for my body. I have a lot of careful planning to do. I can't just rely on Plan A. I need to set up safety measures in case life decides to do something else. After all, as John Lennon put it, "Life is what happens to you while you're making other plans." I have a lot to think (read: worry) about, but it's so much better than having no options left.

And I couldn't have wished for better. *squee!!*

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.