Sunday, May 31, 2015

More Than One Right Answer

I was asked the other day how I keep my faith (in a God of my understanding) when I've had so much happen to me. A friend was trying to play the "Have you tried" game with my migraines. I gave her a few tries & then I explained, in order to be considered a candidate for the experimental ONS device, it had to be show that I had vigorously tried every available option in 2007 and have it fail. I was among a handful of people arcoss the country allowed in. And that's when she asked me, how do I still have faith?"

It reminded me of a time when I must have been four, and the whole family was playing a game of I-Spy. We would get the color, and the first letter of the name of the object, and then we had to find the thing my parents had in mind. They had said, "Red, B!" And I had come up with "Red Ball," which was a piece of a toy I had, not the whole object, but I figured it was close enough. My answer surprised my parents, and they had to admit, yes, I was just as right even though I hadn't found their answer.

There are more right answers out in the world than are available to me. When I was a part of that study, it was one of those miracles of luck where all the right people are in the right place. Oh, that doesn't exclude one really bad apple from being in the mix, and in charge... But still personal miracles can happen despite even rotten folk.

There is so much more going on out there than any of us are aware of, good work by amazing people who are changing the world and even they can't know the true future impact of what they do. Even though I still struggle with disabling conditions, there is progress going on everywhere, progress in me that I cannot see yet, progress in the world around me that I haven't met yet.

The same is true for you. As long as you can hang in there in the best spirits possible, that gives you a chance to meet those opportunities. I know that sometimes my biggest foe is my own doubt, and that I have to have faith that whether or not I get better, that life on the whole can get better, giving me more encouragement to fight the good fight. There will still be times when I'm knocked down and question, but if I'm honest I question success too, so who am I to judge?

Dealing with chronic pain is soul-stealing, of that there is no doubt. Pain robs us of quality of life and robs us the ability to participate in Life. It's the latter which is the most damaging because participating in Life is what allows our souls to grow and overcome those stolen pieces. Even if we must suffer in a tortured body we cannot escape, the beauty and awe of life can be a balm against pain. Connecting with others and being part of a group can invigorate more than any elixer.

The longer I live, the more I see how limited even my imagination is. I may think there's only one right answer for my life, and I have to have that right answer or I'm doomed. Yet the more I see and discover over time, the more I find there are several right answers out there. More than I know. More than my doctors know. More than any of us know...

And in that space of the unknown lies all possibility for you and me. You can have faith in that.

Tuesday, May 26, 2015

Still In Remission!!!

Halleluia, my pituitary gland is working!! However, this tyme is strange because my thyroid is underactive and my pituitary gland is acting like it's primary hypothyroidism. That's fine! As long as I don't have to take prednisone, I'm a happy girl! That is the one of the worst tasting medications ever. I'm lucky in that I don't get side effects when I'm hypo-adrenal, but taking a pill is no subsitute for the real thing. With a pill, I get all my cortisol in one dose. The adrenal glands, however, adjust moment-by-moment based on the body's need. Guess which one feels better? Natural, of course.

I was so scared, so scared... But it looks like my symptoms are migraine only, which thankfully makes everything a LOT less complicated. It also opens up a whole class of medications for my migraines that wouldn't work before as an added bonus! I am tap-dancing with happiness! It's always a wonderful thing when I can walk into my doctors' offices with GOOD news. They love that. I love that. Everyone rejoices!

[Edited to Add]

I should give a big thank you to everyone who has prayed or hoped on ky behalf. I do believe in the power of human beings to affect the lives of others through prayer, Reiki and belief. We undersand just a fraction of this vast universe, and why diseases go into remission is one of them. I mean, I know there's a biological underpinning that we don understand, but there are bigger things in the universe than are dreampt of in all our sciences. Or, in layman: there be some spooky stuff out there and I'm glad of any good luck that comes my way.

So thank you, I do appreciate it. This helps so much, and I hope to take full advantage of my fortune!

Blessings upon you!

Saturday, May 16, 2015

Sleep Triggered by Migraine

I'm turning to my audience on this one. I can't seem to find it in the medical literature, so I'm asking you: have you ever experiences a migraine causing you to sleep? I've been experiencing this for the past year: my migraine triggers will start to flare, and I start falling into an irresistable sleep. I'll even dream that I'm still awake, and this has caused me to do things like sleep-type gibberish and delete apps from my iPad. The only medication I've taken is my nausea meds, and sometimes not even that! No narcotics, no triptains (Imatrex and the like). It happened again yesterday, and it's driving me crazy.

I'd like to sleep in a bed like a grown-up, thankyouverymuch. I don't appreciate falling asleep in front of co-workers. I'm nodding off on my sofa like a little kid. And the consequences have been the loss of some important work. It's so frustrating not to have a hold of my reality. To dream I'm still hard at work when I'm sawing logs in the cube farm is embarrasing! And I don't use any app that doesn't have an icloud or dropbox backup. It's maddening to Craft pitch deck or a presentation letter over days only to have it lost in a 5 minute cat nap. I suddenly come out of a dream haze and see my random sleep wreckage that my thumbs have wrought...

It all made sense in the dream.

Some people say they do their best work in there sleep, but I certainly don't.

Has this happened to you?

I wake up the second the migraine trigger has dissapated. And it's the weirdest migraine symptom I can find. There's plenty of information on migraimes caused by lack of sleep. That is not this. And I'm pretty sure I can't be alone.

Thanks for your comments!

Saturday, May 9, 2015

Migraine Arsenal

It's been stormy on the front range, so I've had to pull out all the stops for migraine control. Whenever I meet a new pain doctor, I always ask for an extra long first appointment (they usually are longer, and I ask for more time still). This is so I can explain to the doctor all the things I do for pain control outside of the pills they give me, so they truly understand the lengths I go to to keep these things under control. I figured this might help someone else, and it shouldn't have to wait for Migraine Awareness month (June).

The first weapon in my arsenal is a steady schedule. I haven't used an alarm clock in years, because waking up suddenly makes me physically ill, so over the years I've learned when I need to sleep to wake up in time, and I keep to this schedule, unless the pain disrupts me (like last night).

When a migraine first starts signs of forming, if the weather is good, I'll try a brisk walk with the dog. If the weather isn't nice, I'll start cleaning. If I'm in too much pain to do either of those, it's on to the next one.

Red Bull & Water
This stuff is amazing for my migraines. For some people caffeine makes their migraines worse. Not me, and I was even prescribed caffeine as part of a migraine medication early on (Cafergot, look it up). The Red Bull has an added bonus of sugar (often a craving) and B Vitamins, which also help. (Suppliments like Magnesuim don't work for me and I already suppliment Potassium). I add the Water chaser to be kind to my kidneys, and for the sake of my stomach, I make it ice cold.

Ice Cream
I will bundle myself in blankets just to be able to eat ice cream to stop a migraine. I go with Ben & Jerry's too, since it's an ice cream that hold even more cold. (I strained my wrist on B&J's working in an ice cream parlor as a kid. It was almost a block of ice compared to the soft fluff of other ice creams. I eat it with a knife now.) It's magic on my migraines to have something that cold soothing the migraine from inside my head.

This one is a blessing/curse. I have begun to fall asleep ahead of some migraines, and sleep through a weather trigger, and I wake up on the other side without the migraine ever forming. But this is not something that easily fits with most employment, so it's only useful on weekends & vacation.

Ice Packs, Medication & Distraction
If all of the above doesn't work, next is ice packs and distraction. If I'm to this point, I'll also start with a few ibuprophen and an anti-nausea pill. Sometimes if I can keep my stomach calm, I can keep the migraine under control more and I don't have to go the big guns. I'll use distractions like composing a blog post or really good edutainment to try and keep the pain out of my awareness as much as possible.

Oxygen, Ice Packs, a Shower & Big Guns
If the migraine comes on so strong that I need the big guns, usually the big guns alone won't to it. I'm not just reaching for a narcotic at this point, I'm also using my oxygen machine (usually used only at night) and sitting in my tub with the shower un so that I can use the random sensations from the water act as a sort of static "noise" on the nerves that draws away from the pain sensations in my head. Lying agains the cold tub on one side and the bouncing warm water on the other can really throttle some horrendous levels of pain.

I rarely use my full supply of breakthrough medication. Mostly I like it there to know I have it there, just in case. I don't want to pull out the big guns, ever. But sometimes I need them because my head feels like it's being mauled by a bear. I will always reach for the little guns first, I mean, when they're little guns like ice cream and Red Bull, who's complaining? However, I like the security of the big guns around. This is bear country, and the rest of the arsenal is useful too.

Everyone's migraines are different, so not everything I do will work for everyone, and there's a great many number of methods that I've left out. For some people massage, yoga, Hemp CBD tea, and acupuncture work. I've been through many of these mathods for long periods of time through the years, so I know what works and what doesn't for me. if you get migraines, you will have to build your own personal arsenal, and this will take trial and error over time. Also, what works and what doesn't may change. I used to be able to use Botox, but as I've grown older, it's easier for the medicine to spread to places we don't want, like my eyelid. I regularly switch non-narcotics because my body over time starts showing unwanted side-effects. But we know the gaba-class of medications works well for me, cutting my pain by half, so we rotate through the medications in that class that I can tolerate.

You may have to go through the same. Always remember, though, that migraines is one of the oldest described medical conditions, and ancient cultures would pierce and remove part of the skull to help sufferers (it works, and there are reasons why...). Our culture, thankfully, is more sophisticated than that, and we have more options available. Discovering them is a process, however, one that's fully worth-while.

Tuesday, May 5, 2015

Pain versus Life

I'll be honest. I don't like leaving my house. My house is my comfort zone, somewhat literally. When you suffer from debilitating pain that can suddenly take away your ability to walk or grasp with your hands, and that pain comes on somewhat randomly, well, then there's a big difference between you leaving the hoise and me leaving the house. There was one time I had someone hold my purse, and he asked why it weighed 20 lbs. when it was so samll. I replied without thinking, "I have to carry so many emergency supplies. It's not just the emergency shot, it's not just the breakthrough medication so I don't throw up or become immobilized with pain. It's all the paperwork I have to carry that goes along with those medicines, all the doctor's business cards, all the emergency contacts (in case my phone is locked). And then there are the regular day to day items like wallet and keys. It is a minor logistical operation every time I leave the safety of my home. And that can create enough of a barrier to make me not want to go outside.

Even today— somehow my breakthrough medication fell out of my purse and I didn't have it on me when I needed. That meant having to muscle through an event, trying to concentrate, and also trying to keep my breakfast down. I learned earlier this week that movie theaters have only gotten louder since my migraines started. Apparently kids these days want to feel the movie explosions like some thrill ride, not just watch a story on screen. I about collapsed, and we were in the back row! (Thank goodness the feature was more an art house film, but even then there were parts in the soundtrack where I wanted to strangle the director, "Are you trying to hurt me? Stop the noise!" But thankfully those were few and far between.

But it made me realize, it's not just me! Well, it is mostly just me that reacts this way, but also, people are demanding more and more sensory input where I want less and less. As another blogger mentioned, I'd be happy if things were just normal for a while: "I want to sustain some sense of balance and maintain my work for a while." From Nikki's post, Maintaining consistancy is a good goal to have. And considering the roller coaster of pain we have ride "Forever," a nice, flat straightaway is a good change of pace.

So is it any wonder I find myself dreading the moment I know I have to let go of the handle of my front door? Not really. I don't know what to expect as much as the next person, but I can guarentee there is a high likelyhood that I experience pain. Sure, that pain is just as likely at home, but at home I know I can find comfort, I have the tools at hand that I need to take care of myself. It feels safer to stay at home because it is safer to stay at home.

But with spring exploding outside and around me, I also have a draw to be outside, to be with people, to explore, and discover, and grow. (My garden is full of little potato plants that have just burst through the soil!) I want to be able to be out there, engaged with other people, helping my community. And that very real fear of being stuck somewhere, in pain, unable to make my way home, can stop me from stepping outside my home.

I think, like Ms. Albert mentioned, I need to scale down my goals. Though I clearly have spring fever, I can pace myself as well. When I learned to ride a bike, it wasn't all at once. I started on a Big Wheel, moved up to a tricycle, then a bike with training wheels, then just one training wheel, and when I graduated to two wheel was when I realized the third wheel was causing me more trouble than helping. I had learned how to balance myself even as the bike moved from side to side beneath me. I learned how to feel the invisible tug of inertia and gravity and use those forces to balance and propel myself forward without thinking.

I am not there with my chronic illness yet. I need the training wheels of an emergency stash of pills in case they fall out of my purse at home. I need the emergency shot and the pounds of paperwork that go with all these medications. I am not in the clear yet. So it's perfectly okay for me to be cautious, and scale back my ambition to a more acheivable level. Does that make me less capable? Hardly. Though I may not be able to soar on invisible forces like I did as a kid, I now respond to much more serious invisible forces, and it's a testiment to my hard work that I am able to do what I can now, even if it's only at Big Wheel level.

Recovery is not a straight line, it is a ribbon that we follow through many twists and loops. We are always moving forward along the strand, even if it looks like we've fallen back. And it's okay for me to pace my recovery at a rate where I'm comfortable. After all, I'm the only one who really knows what's going on inside me. When consistancy has been gone for so long, it is a worthwhile goal to have.

Thank for the reminder, Nikki!

Monday, May 4, 2015

Remembering Our Worth

When we study history in school, we're taught the names of the big movers and shakers, the "important" men and women of the world. What you realize when you start to become a student of history, is that some of the most precious accounts we have, often called "eye-witness accounts of history," come from ordinary people like you and me. This is something I realized young, as my parents told me their stories of world and national travel. I was lucky enough to have traveled extensively before I became ill and through my recovery. I have traveled to the Hopi Nation, one of the oldest continuously enhabited places on this planet (the timbers in their homes have been carbon dated to reveal a construction time of over ten thousand years ago []), by one of the oldest nations on this planet. I have been privlidged to see their dances and been invited to sleep on their land.

And when I look at my father, still working so hard after all he's been through (his fear of hospitals rightly comes from a time he had to be quarentined on board a ship because of a case of Yellow Fever, and later in life he suffered three years of hives no one could explain... all while trying to attend college). He's seen an amazing age, and it is thanks to his interest in computers that I have had such an amazing career. We were talking last night about logistics and how he and I have similar experience of how to launch and invasion: his from his time in the Navy, mine from software and hardware products. It's the same theories because it's all about trying to coordinate the actions of many individuals into one large action over a wide scale.

This requires weilding two skills sets: the ability to work autonomously without oversight (working even if no one is watching), and the ability to coordinate with others, and often very brilliant minds coupled with hefty egos and personalities (getting along with exactly those types who do not play well with others). And all this networking must be coordinated through massive communications, often to different groups working in very different time zones. It requires an adherence to rules that can be frustratingly fluid, as flexibility is also required to adapt to ever-changing discoveries. In addition, people need to be organized in time and through time, kept on the roughly the same page and coordinating critical tasks at key points. All this results in what is known in the "biz" as: organized chaos.

Yet even with these similarities of knowledge, I also realize how much my father is a treasure: he traveled one of the last regularly operated ocean liners. He saw the first copying machine, the first microwave, the first VCR, and saw computers shrink from multi-roomed beohemiths into hand-held near-magical devices. He's seen me become a bionic woman, just like they had on TV, only to save me from pain rather than augment reality. But the marvel of that device: it had a battery, it was re-chargeable, and wearable inside the human body. What a creation to be witness to! And, too, he remembers growing up in the shadow of World War II, events that still shape the lives of every person on the planet today.

What amazing sights he has seen! And what's more, each of us is a witness like this too. Who knows who's letters are going to survive 1,000 years? Who knows what digital archeologists will find fascinating 10,000 years from now in the blogs and posts of our lives? Who will future historians look to, to be eyes and ears into our world generations from now? How will they find us different? How will they find us the same? Heck, what will these posts look like to me, thirty years from now? Hello, my future self! I'm happy to have written this down for you!

Which one of us will be discovered and renamed to suit their future language? How clumsy and archaic will my attempts at communication seem. Will any of this survive at all, or will some great catastrophy turn the lights ot on computers forever, causing all this knowledge to be locked away and forgotten forever? Who can say what the future holds.

Who can say what your future holds?

Is there an Opera sleeping in you? Is there a simple item you treasure that will become a family heirloom? Is there an act of forgiveness that unites estranged parts of your family? Or is there a phone call that rekindles a spirit of closeness in a friend? Much as this day might seem connected to yesterday, there is an impenetrable wall that exists between now and yesterday, one we can never step past. In each moment, we are given the opportinity to choose whether to keep in step with the past, or break with tradition and choose something new. Thought becomes word, word becomes deed, deeds become reputation, and a reputation becomes a legacy. Legacy becomes tradition, tradition becomes culture, culture becomes identity, and identity becomes preferences. Preferences become thoughts, and the whole cycle is born again anew.

What a miracle our lives are! What amazing things we can do! We can create such joy, compassion, and community together. So remember to celebrate your life and the lives around you. Give someone a word of praise or share a laugh just to help lift a stranger's spirit. We have such a capacity with our lives, in even the smalles things we do. Celebrate you, celebrate us.

We're worth it.

Saturday, May 2, 2015

What Does This Say About Me?

I remember when I was a young twenty-something, there was an older woman who was a mentor to me, whom I loved, and who I wanted to emulate. Then suddenly, she became hospitalized for anxiety, and I found myself frozen. Mutual friends would say how much a visit from me would mean, but I was too afraid of what her hospitalization said about me. And I knew my reaction was irrational, but I just hoped she would get better so I could see her soon. What I did know is where I'd seen this before: in training films on alcoholism recovery. When someone in the family decides to get sober, other family members will often rebel, and even try to persuade the alcoholic to start drinking again, because of the fear they have about what that person's decision says about them. Here's someone they love, who they see a lot of themselves in, and they've chosen to put down something they know they enjoy, and they wonder, "What does this say about me?!

The answer is:
Absolutely nothing.

We may see ourselves in others, but that does not mean we are others. Just because they make a decision to change their lives does not mean there's anything you need to do except continue to be their friend. And I know that this is an instinct that is almost unavoidable when we're close enough to someone. But that doesn't mean we can't overcome it. I was able to send condolances to my friend and tell here that I was too scared, and I hoped she forgave me. If nothing else, we were always honest with our feelings. And she did get better, and was able to paint the town red, and I couldn't be more proud of her.

The reason why I liked her was she was a powerful woman and a force to be reckoned with. That didn't mean that sometimes she didn't need help too— we all do. The more important point was that she was responsible with herself and her life, and she was able to guide so many young women on to true self-esteem. I still have her signiture in my favorite book in a bookcase not too far from me. We eventually lost contact after I moved to the PacNW, but she has had a lasting impact on my life, and I credit her with a lot of my maturity. She taught me how to own my mistakes with humility and not humiliation, when I had not know there was a difference.

And I know that's the reason why many healthy people don't deal well with people with chronic illness. We just want our friend to get better so we can hang out with them like we used to, and we hope to God that we don't have anything chonic that may be lurking in us. Somewhere in the back of our minds we wonder if this is how growing old starts, or bad luck starts, and then we shake our heads, wonder why we're allowing ourselves to think so irrationally, but we still can't shake the feeling of impending doom, headed towards us all.

It's human to be scared. It's also human to overcome our fear and realize, our friend is our friend, and we all stumble on the road of life. It's worthwhile to reach out to others even if they haven't reached out to us, and not wait until they're better to seek their company. We can let them know their company is missed, even if we can't talk to them directly. (Although this is now the age of cellphones and SMS text messages, so really, you have no excuse ;) Know that even just a word of encouragement and appreciation can help so much.

And remember: What does this say about you? Nothing you need be ashamd about. You're human, just like the rest of us.

Friday, May 1, 2015

The Bumpy Road of Recovery

I have been freaking out all morning, and I just now realized why: I think my remission has ended. For the past 3 months or so, I've been able to be off both my steriod (prednisone) and my thyroid medication. It's a balmy 72 in my livingroom, and I'm shivvering like it's 50. I have on sweatclothes and a blanket, and it's only when I add a space heater blasting on my legs (under the blanket, no less*) that I feel warm enough. I know it's not a cold, I just got over that. Add to that other symptoms that are tell-tale, and I may not be in remission anymore.

It's difficult to tell, sometimes whether it's this set of symptoms causing one thing or another. But I've gone in and out of remission at times, and I've always been spot-on in my sense of these things. Many doctors find this difficult to believe, so I've learned to prefice what I know with, "I think I might..." and that results in much better service. But trust me, I feel it when things aren't right.

And I hate it.

That's why I've been sitting, binge watching videos, with a blanket and heater on, because I don't want to admit that I'm still frail enough to require this crap. I hate taking pills, and I have rebelled countless times, even in the onslaught of migraine pain! I seem to want to insist I'm fine and don't need help, when clearly both I and others know I do. I'm not like some people who seem to love being sick. I want to be able to conquor the world, and sick was just not a part of my plans! I was so bad, that as a kid, my parents used to think I ran myself ragged. They were partially right, because learning how to take proper care of ourselves takes time, but the also didn't realize how much of it was just the apple not falling far from the tree. My mother had pneumonia before I was finally able to talk her into seeing a doctor, who then sent her straight to the hospital. My father ignored his stroke for days out of the same stubborn fear. Is it any wonder I do it too?

Yet I have to count myself lucky. I do have a disease that goes into remission and one, that when not in remission, at least responds to medication. There are plenty of people who aren't that lucky. There are other people whose disease carries a stigma, where to be sick is also to be judged as earning punishment for a transgression, and most of these reputations do nothing to help anyone. The keyword to all of this is forgiveness.

I need to fogive my body for not being what I wanted it to be. I need to forgive myself for not having any control over it. I need to forgive others who, whether or not they caused their situation, deserve forgivness for at least not seeing a better way out of their problems. I need to forgive myself for being scared of what is a reasonably scary situation. And I can be grateful that I've been given the grace and courage to continue on despite it all. I'm very lucky the headaches aren't every day, and the further I can get from that nightmare, the more I can recover.

Though it may be a bumpy road ahead, I am glad that at least I still have a road. Each day is a new beginning, and I am glad I can take part in it. Even if that means being a little scared for a while about a slight decline in health. It's nothing I haven't lived and worked through before (my entire trial work period was while on these medications), so even though it's not how I would like things to be, it's all still manageable.

Ever forward!