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!

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.

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.

So much, I don't know what to think!

First, I'd like to thank everyone who has been praying and sending their energy to me and my family. IT WORKED. My father has made a miraculous recovery: his paralysis is gone, he has a few remnants that will require therapy, but his prognosis is good. Beyond that, he has had what I can only describe as a "spiritual awakening" (aka, a "come to Jesus" moment). He told me, "I need to rethink everything!" And yeah, he does. But true to form, the day after he got out of the hospital, he went back to work! (He's self-employed, so mainly it was to let everyone know he was okay...). So, yeah... GREAT news.

And that's not all.

I went to my new endocrinologist and she was AMAZING. She reminded me of Doc Broyles, and she patiently took my story spending over 45 minutes just taking notes and getting my background. She not only believed me, she kept repeating "Your story is consistent, so..." which I can only interpret as, "I don't think your lying, so...". That was so reassuring. Then she apologized for my bad experience at Anschutz and told be that the doctor I encountered can get very defensive when challenged, so I was unknowingly setting her off! Plus, I was informed when she was proven wrong, that probably brought out the worst in her. However, she's apparently an excellent teacher. I was floored.

But wait! There's still more!

She took a thorough background of my estrogen levels and let me know that it should be possible for me to have children! She's willing to support me having a child even with as much trouble as I've had, even with my health risks!!! I went into orbit... the only thing that I know I've wanted to do and be is make a child from my body and be a mother. I had put that beautiful dream under a bell glass and stuck it on a shelf, like a butterfly pinned and put on display: beautiful but impossibly dead. But now... a child of my own...


It's so much, I don't know what to think! I try to, but then I'm just in awe of how amazing it all is. This magnificence is staggering...

So THANK YOU!!! To you, the stars above, and any divine assistance!

I'll try to update soon, but man it is hard to think! lol

Until then, thank you again.

The Shortest Sentences in the Human Language #HAWMC [LATE]

Wait. That's a word in the 'shortest sentence' in the English language category. The shortest sentence in the English language is: No. I can handle wait. Wait is no problem for me. I can even handle wait at Level 10 pain... and believe me, my Level 10 is no joke. What I don't like is wait...wait...wait... Psych! Just kidding! I really meant: Never. That's some uncool $#!+ right there.

And there have even been studies on it... if you let people know what time the next train arrives, they're less anxious. If you let people know how long the drive will take, they're less likely to speed, even if it means they'll be late... in this age of cell phones you can just call can inform your party.

No is just... no. How do you get around that? No. It's a denial, a wall, a deep dark hole... No. You need more letters to create or even insist! No is just an ending. What comes after no? Silence.

Dealing with no is hard. I know. I have hard time with no. I had a mother who would pull out no first, even if it was something I desperately needed. So I learned how to out stubborn her. That has been a boon and a bane in dealing with doctors. Some react just like my mother and I eventually win them over with facts and evidence. Some are like my ex-boyfriend who take no to a level of extreme heights, you need a telescope and a star chart to see them.

"See that second star on the right?"
"Yeah?"
"You can see a flag that says "NO!" just beyond that horizon."
"Oh yeah, now I see it!"

But no is not always defeat. Our path from our birth to death is rarely a straight line! Or at least you hope it's not... it either means your life was very brief, or it means your life was very boring. Both are horrible outcomes! No, when it's followed by helpful or better information is actually a good thing.

Did my father die of a heart attack at sixty? No, he got to a cardiologist and they were able to put stints in, avoiding the heart attack. Were we able to make our flight? No, it got canceled due to weather, but we met this marvelous couple in the lounge while waiting for your next flight. They were going elsewhere, so we never would have crossed paths otherwise! Did you graduate with a chemistry degree? No, I got an English degree, but I combined it with my love of computers and became a technical writer instead of a doctor. I can still practice my craft, even if I'm not employable in the traditional sense. I could feel a lot more useless than this! lol

No can also mean no, not yet. But as I mentioned before, that's just means waiting, and I'm cool with that, as long as there's a payoff. Some say, A bird in the hand is worth two in the bush! And while that may be true, there's also the marshmallow study which shows children who can resist temptation are more successful later in life. And I've seen that in my life on the daily. When I'm able to be patient with others, they relax and are more willing to work with me. Patience is an amazingly powerful skill. I may want things to be Right Now! and Quick Like A Bunny!!! But that doesn't mean everyone else wants it at that speed. Some people just don't move at that speed. Others just prefer to savor life's moments. Still more just can't go that fast, and that's okay. So no can mean, no wait a minute, let me explain.

My apologies for the lateness of this post, I meant to write yesterday, but the muse had not yet arrived. Thank you for being so patient! ^_^

[ted id=553]

5 Challenges, 5 Victories #HAWMC

The 5 biggest challenges of my health are 1) crippling pain that is difficult to manage 2) overwhelming fatigue that cannot be medicated 3) mood swings that cannot be medicated (the science just isn't there yet), 4) the stigma that come from a disability 5) the misunderstandings when that disability is invisible.

My 5 victories that keep me going: 1) the right pain medication that allows me to control my pain 65-85% of the time, 2) medication for my chronic nausea so I can take my pills on a regular schedule, 3) friends that inspire me to new creative heights 4) an audience & followers that support so much of what I do (really I wouldn't be here without you), and 5) the continued love I get for and from my writing.

My ability to share my struggle with you, raw and often unfiltered, has been a true blessing. The outpouring of response has kept me going through dark times. When I've been able to help someone, then that means my suffering wasn't for nothing. If I've been able to make it real or give it voice I'm a way no one else has been able to, that's such an amazing feeling: both awesome and humbling all at once. Who am I to say what it's like for anyone else? But you reply that my story has been your story too, and we've been able to connect in that way.

I do hope I've been able to share your story of what it's like and what we go through. I hope that I've been able to give you a laugh, or make you smile, or let you in on some tidbit you didn't know before. It makes my day whenever I can do that, and I certainly call that success. You are my success. A blog yearns to be read, so that you're here is a victory for me. Every link from outside traffic sources sends my heart aflutter. When a super-spreader finds a post an makes is go viral? Those days are like Christmas.

It was as though I missed Christmas last Summer - I got over 6,000 unique visitors in both months. I wish I knew how to read blogger stats better, so I could properly show my appreciation. As it is, all I can do is bask in the mystery and the love. My tragedies have been the foundation on which I have built my victories. There's no better way go!

Thank you for helping me accomplish that.

Blog Carnival - Keeping Your. Head Above Water w/ Chronic illness

I was a big Beatles fan as a kid, so I'm going to quote @RingoStarr and say, "I get by with a little help from my friends." My mind is like a dark alley: you don't want to go in there alone, because there's a good chance of being mugged! Criminals are cowards, as my Dad used to say, so I swore to always be brave! even when it came to exposing my shame to the world. That's a hard thing to do if you don't have friends backing you up!! And the chronic illness community has been there for me. You all are the best friends a gal could have, and I couldn't have done this without you.

Some names have been named, others have code names, but the large majority of you have helped me and never gotten so much as a thank you... (Relatively speaking). I'd like to fix that right now.

THANK YOU

I wouldn't still be here if it wasn't for you.... And if we've had a failing out (as I am a fragile, delicate flower... A sensitive soul...) this goes to you ten-fold.

I am truly blessed, even with all this awful stuff happening to me.

LOVE!
Pamela Wilson Curtis

It's Official*! I Am No Longer Disabled!!!

Well, folks... I've done the impossible: I have left the the disability rolls! According to Social Security, "less than one-half of one percent of Social Security Disability Insurance (SSDI & SSI) beneficiaries" become 'non-disabled' —42 USC 1320b-19, Section 2(a)(8). Who da man? I'm da man! But this fact hides a difficult truth: my life is still far from normal.

I am amazingly happy, and I am amazingly grateful, but if I said I didn't mind that I'm still sick, that would be a lie. I do mind sometimes. It's difficult to live in the between. I'm caught between a world where healthy people are expected to be able to fulfill certain obligations. But I'm still not healthy, so I often fall short. Sometimes I feel like I've pulled off exactly what I set out to do, I have made this look awesome... but now people expect me to be awesome as well, and that... I'm not so good at. Heck, I struggle to do "normal people things," like stay on top of the laundry, keep up with my bills, etc. I can do work, and a little bit on the weekends, and that's it. I've learned the hard way that I have to include socializing in there to fulfill my psychological needs, otherwise, I end up feeling like I have no friends, crying on the couch with a blanket and a half-gallon of ice cream!

So I have to keep everything in a fine balance, and I have to obey strict, self-imposed rules, otherwise this whole delicate machinery of my life comes crashing down. I've set things up like a Rube Goldberg machine* in order to achieve what I have. The time I put into the doctors allows me access to the medication I need to control my pain, which allows me to work, which allows me to afford the medication. The medication side-effects require that I get 10-12 hours of sleep a night. Work requires that I be there at a certain time. Which means I have a set bedtime in order to get to work on time. That means I also can't blow my sleep schedule on the weekends, otherwise it's too difficult to get back on track for Monday. That limits what I'm allowed to do, and who I'm able to see, on top of the limitations placed on me by my disease.

My disease means that I don't wake up like normal people. Most people have cortisol kick in around 4am to help them start the waking process. My body doesn't do that because my cortisol comes from a pill. The way I wake up is with adrenalin, because my body has realized that I'm not producing cortisol, which means I better wake up, or I could die! So my fight or flight mechanism is what wakes me in the morning. In a friend of mine who has adrenal insufficiency, she wakes in fight mode. She's even woken up kicking and punching. Me, I wake up in a terrified panic. I can't even use an alarm clock, because that freaks me out so bad I would need a pill to calm down. So I wake up to the gentle sounds of talk radio instead, and skip the chill pill. And my disease also means that I must take my pills at a set time in the morning, so that I'm able to function properly for the rest of the day. It's all very complicated and intertwined.


Rube Goldberg Machine
I was still so proud to make that phone call to Social Security. I was also terrified, because this has been my life for the past decade, and I've gotten accustom to many things, but also very proud. I still shake my head sometimes in disbelief. I've done it. It is possible. I've put my life back together again. I'm walking among the working, and I'm one of them. I pay taxes, instead of being on the government doll. I'm a contributing member of society again! I have made my crippling disease manageable. Wow!

So my message to you is, keep trying. If you have to stop and stand back and re-evaluate some things, that's okay. I've taken a year off from my medical struggles to rest and recuperate. Sometimes that's what we need to then charge back in there with all our might. But keep trying: the impossible is possible. It make take years and a strange, wandering route, but you can get there. I did. I'm living proof (pun intended).

Less than one-half of one percent (<0.5%)... but I did it!
Shiny!!!!

[*Update: Nope, didn't make it.]

WEGO Health Awards Nomination!

Holy carp, I never expected to get this email: "Congratulations! You’ve been nominated for the Health Activist Hero Award in this year’s WEGO Health Activist Awards!" Wow... I'm humbled! I'm sure I'm up against so heady competition, so I'm just happy to be nominated! (I see MyNewNormals.com in there, so I'm among giants.) I'm so honored!!! Squeee!!!!

Thankful Thanksgiving

This year has seen so many wonderful things for me, I can't even begin to describe. I've been able to do physical therapy, and all my doctors have been able to see great progress. My disease has a cure, even if we haven't been able to get access to it yet. I've been well enough to help take care of my step-brother, himself, a disabled Vet. I was well enough to cook our entire Thanksgiving feast, something I haven't been able to do in years, and though I was exhausted afterwards, I felt whole, having been able to complete my part in our annual traditions.

That's one thing that is really lost when one becomes disabled---our ability to participate in events that help us feel the flow of the year. When the flow of our lives is interrupted by a disease, what used to be the change in seasons is now a change in doctors and medication. What used to be the delicate passage of time has become the ticking off of days in a prison, never knowing when, or if you'll ever be set free. When life becomes about symptoms and self-care, spending energy on holidays can be impossible. It's easy to become detached, and feel outcast. Because we can't participate, we lose touch with the sense of joy we used to get.

It can be even worse for caretakers. They can feel caught in the middle, wanting to have fun, but feeling guilty for being well, and being able to enjoy these times, while their sick loved one cannot. They may lose their own sense of joy in the holidays because diseases don't take a vacation, so neither can they. They may try to go out and have fun, only to worry the entire time that they're away, so that going out and trying to take a break can be even more stressful than staying at home (at least you know nothing's going wrong, then).

And I was going to write some Pollyanna-ish things about, "If you can't do what you love, do what you can instead!" But honestly, that can make me more depressed than just trying to pass on the holidays altogether. Doing holidays half-assed, that is, not being able to do the things I used to do, but doing something close to it, to try and recapture that old feeling, just ended up being a reminder of why things sucked now. It was honestly much easier to just let go of the holidays altogether. That was something that happened on planet wellness. I didn't live on that planet anymore.

Here on this new planet, we didn't have winter holidays. It just got cold, you got a break from appointments, and you had to be really careful about stocking up on medication because the pharmacies closed on weird days. Presents aren't given, because no one has any money for anything extra anyway. Time is spent, instead, on studying the new changes to Medicare, which require a degree in government-speak before you can understand them.

Winter was the time when other people spent as much time indoors as me.

Now that I'm starting to make visits back to planet wellness, I can say that it's really good to be home again. I'm not going to be "here" for Christmas yet, but my doctors and I are working on it. And yes, I'd rather it be an either/or thing. I don't want it to be the "this is what I can manage" holidays. I either want the holidays the way I want them, or I want to skip them entirely. If I try the middle road, it hurts my heart more. I "miss out" more if I try to do the holidays in a way that's new, because I can't manage tradition health-wise. I miss the holidays less if I don't participate at all.

Of course I want to enjoy the holidays. But if I can't, then I'd rather do without than be teased by visions of what I used to be able to enjoy. So my real suggestion? If you have to have holidays, find a culture that's completely different and start following their holiday traditions. (There are a lot of traditions from Asia that celebrate the seasons in very beautiful ways.) If you are religious, and following the Holy Days is important to you, contact your local church. There are usually volunteers who will bring the ceremonies to you, as an act of service, if it's too difficult for you to make it out.

Now, for caregivers, if you still want to go out and enjoy the holidays, without the baggage of guilt for leaving your sick loved-one behind, my suggestion is: take a "Guest Book" with you when you go out. When you talk to folks, ask them to take a moment to write some well-wishes to the person you had to leave at home. When the party is over, you can bring the Guest Book home for them to read, to let them know that people were thinking of them, and that they were missed. Bringing home a doggy bag with samples of all the goodies from the party is also a good way to help the sick person feel included. As they read, they can sample the treats, enjoying the quiet after-party with just the two of you.

By asking other folks to send their well-wishes, you also strengthen the sick person's ties to the community when they can't go out themselves. You're doing them a service by making sure they're not forgotten at the celebration. This means a lot to us. We feel included, even though we're not able to be there ourselves. It's easy to feel left behind, even if the cause of our not going is no fault of our own, it can feel like exclusion. It can feel like people don't want us around, even if that's far from the truth. A Guest Book is solid evidence against these fears. It shows us that our presence was desired. It shows us our value to the group, and also reminds the group that we still want to be around, even when we can't. (That helps keep future invitations coming.)

I am thankful that I was able to enjoy "Turkey Day" in the way I like. I had missed it. But I'm also thankful of the path I chose when I couldn't enjoy the day like I wanted. It helped me survive the heartache.

I hope you are staying strong through this time, whatever path you choose for yourself.

I'm Working Again!!

Bust out the fanfare and call a parade, I'm working again!! Now, it's not an absolute sure thing. I could collapse under the stress and discover that it's not possible... but right now... oh, things look good! I'm able to control my pain through my medication. No one at work is any the wiser that I have this much going on with me... I got my first paycheck this week. A PAYCHECK!!! It was only a few months ago I was dreaming of having my symptoms managed enough so that I could work, and now... holy cow!!

I didn't think this was possible. I didn't think they had the drugs out there that could take care of my pain and not demolish my mind. They do! I didn't think there was a way to control my nausea without putting me to sleep. There is! I didn't think we could get my migraines to a point where I could work through them. We have! I didn't think there was medication for the neuropathy so that I could be reliable enough to write all day. So far, so good...

I'm pacing myself. I'm taking things slowly and not rushing. I'm being cautious with my body and getting plenty of sleep. Right now all I can do is work and sleep during the weekdays. But that's okay. I get SO much of my life back. I don't have anyone else I need to be awake for during the week, so what does it matter? And as my tolerance for activity builds, who knows??

We still have to battle my autoimmune disease. I need to save up so that I can make it through 4 months of treatment. But holy cow, now I have a way to do that!! I've got 9 months... nine months of training wheels, where I still get my SSDI in case this all suddenly falls apart on me again. I think I'm able to keep my Medicare longer, but who knows with this whole Obamacare...

And I realized today that for the past year, I've been able to shower standing up, and only when I was with migraine or the stomach flu did I resort to sitting in the tub! That's HUGE!! That was things started getting scary for me when I originally got sick---I would get too dizzy in the shower and would risk passing out if I tried to stand. It's been over a decade, and I'm now able to shower like a normal person again!!!

*LOL* Oh, but there is a mountain of debt awaiting me. I'm pretty sure it's about the same price as a house (the whole house, not just the down payment). That is daunting. But thankfully, I have a lawyer in the family who might be able to help me restructure my debt. Oooof... that's a huge problem of success: cleaning up the wreckage of my past!

But now I get to clean up the wreckage of my past! Now I can start to be a responsible citizen again! I need to pace myself in this area too, because trying to do too much too fast can leave me broke. I need to be responsible with my finances, of course. However, now I'm not making a wreck anymore. (So far... training wheels, and we'll see...) I'm a really real adult again! I don't need help. I can accept it if its offered, but I don't need it anymore. I can take care of myself!

At the beginning of this disability I was in so much pain I didn't know how I was going to survive, let alone get back to where I was. There were several times where I almost didn't! That was scary... I was lost, deep in the wilderness of chronic illness. Am I out of the woods? Maybe... signs are pointing to yes...

HURRAH!!!!!!!!!!!!!!

Thank you everyone for your prayers and support during this time. I'm still nervous about my ability to do this, but I know how proud everyone is of me, and for that... bless you. I've felt so worthless and miserable for so long. It's tears of joy now when I choke up. You believe in me, and that means so much. THANK YOU!!

#NMAM Blogger's pick... (confession!)

Choose your favortie blog post from any of this month's prompts from someone else's blog to share with us, and tell us why it's your favorite. Okay, here's where I have to make a confession. I don't read other people's blogs! Why? I don't know. I like the stuff founded in science. I read scientific blogs all the time. But I'm ashamed to say, I don't normally keep up with my fellow bloggers, unless you're on my Facebook feed...

When I blog here, I like my stuff to be well researched. Or, I like to debunk misinformation out there presented by professionals as "fact." That takes a lot of time. In fact, after starting my full time job, I've realized that all the research I was doing on sites like KevinMD.com, PainTopics.org, and WebMd is a full time job. I haven't been able to keep up with it while working and doing this blog-o-thon! I really do pour all of my time into what I'm doing here, and I have nothing left for anyone else. I don't know if that's a good thing or a bad thing.

So there's my confession... though I participate, I'm still a loner. That's why I'm so thankful for everyone who reads my blog. I know I don't do the same, except on rare jaunts of curiosity! So thank you... from the bottom of my guilty heart.

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

P.S. If your blog has a Facebook page, post it here and I'll be better about following it! lol

#NMAM "Father Knows Best"

Some understand Migraines, some don't. It's Father's Day. Write a letter to your father or the man closest to you, and talk to him about your Migraines. Dear Dad, I don't think I have to explain to you how awful my migraines are. You've been incredibly supportive through this whole process. I know, too, that you understand chronic illness, and how easy it is to find yourself beyond the limits of medical science. You've been there yourself. And I know that you believe in me and my ability to get back on my feet. You wouldn't be rooting for me out here away from home if you didn't. Though we haven't been able to spend a lot of time together, I've loved the time I have received.

You've always been a great role model for me, working so hard to get where you are now. I hope you see how hard I'm working, so you don't have to worry about me anymore. I want you to be able to sleep peacefully at night, knowing your daughter is okay. Better than okay---that I can handle myself even after everything has gone to hell. I want you to know that when the crap hits the fan, I'm going to be fine, regardless.

I know that this is not what you imagined for my life. I know that it took a while for my sister to get it through your head that I was not well enough for all the great things you imagined for me. I know how much of a disappointment this all has been. But I know you're still proud of me, and amazed at the work I've been able to do because of it. You always said I had a gift with words, and now I'm really putting that gift to good use. I know that even though it's not success in the conventional way, you see me as a success.

And it was your words, more than anyone else's, that helped me pick up the pieces after things had gone wrong. "It's not the mistakes we make, it's our recovery from them that counts. It's not what happens to us, it's how we deal with it that matters."

Thanks for being there, Dad...

Your daughter.

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

#NMAM Challenge #16: Lead, follow, or get out of the way....

Today's blogging challenge: Lead, follow, or get out of the way.... Which role fits you and why? I see myself kind of as a leader, but more of a coach. I can tell you all sorts of things, but it's your job to put them into play. You also get the credit for scoring points... it's the player that wins the game, not the coach. I want to share my experience, strength, and tenacity (because hope is sometimes a liability). I want to see you be successful in the management of your disease, and all the baggage that comes with it. That's how I score points.

Let's face it... this crap is hard! No matter if you're a leader, follower, or loner, it doesn't matter. This health stuff kicks our ass. If it didn't, we would be here! We'd be up to far different activities if were were disease free. But here we are, so we try to make the best of it we can...

Some people might say I'm a leader. I certainly like being on panels. I don't mind getting up and talking before large crowds. I'm not shy in the limelight. Thing is though, I'd much rather have personal one-on-one interactions with folks. I don't want to be the leader of anything. I'll take a leadership role to help people out with organizing the logistics... but I'd much rather we all be on equal footing. My disease certainly doesn't care if I'm in a leadership position. You shouldn't either.

Each of us has something to contribute with our experience. You don't have to be proud of your migraines. But you can be proud of your ability to get through them. It may seem (at the time) that all we're doing is holding on to a run-away train... That there's nothing we do to be proud of. But the truth is, a lot of people don't even have to deal with going on that ride. That you get up afterwards and face the world, doing your best to brush yourself off from the wreckage you just walked away from... That's a big deal!

You don't have to be a leader to make a difference. The smallest gestures of appreciation and kindness can mean the world to someone else. Even if you see yourself as only a follower, your following means something to those who lead. If you're a leader, that you stood up means something to those who follow. If you're barreling forward on your own course, your efforts break ground and show new, unconventional ways of doing things. Everyone has a place.

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

#NMAM Love letter to yourself

Write yourself a love letter. Tell yourself how wonderful you are. Remind yourself of the things you have accomplished despite Migraines. There are times when we need to be reminded of the good things about ourselves that others see that we may have missed.

Dearest Pamela---

When I looked into your eyes, I was struck like lightning from a blessed rain. What a beautiful soul! I had to stop my day for you. Everything else could wait for a little bit. You were a stranger, and all I had was this moment. I stayed to watch you, as long as I could dare. I was delighted for the chance to speak to you, even for something so simple. I wished you a good day when I left, just to see those eyes.

You've known pain that others cannot have imagined. You've known days of darkness few have known. You got through them. That much is clear in your eyes. Let that pain slip from your shoulders now, like the shedding of old skin. The days of your bewilderment are over. You understand it now. You have the tools to master it. You have mastered it. Though we live through hard times, those times teach us. Yours is a soul forged in fire. You ride the pain, now. It carries you forward.

You are a woman, reborn, with a strength few can match. You have found wisdom that few will ever know. Let there be tenderness now, between us. Let me soothe the loneliness that's been there so long. You are not alone; I would know you, for the beautiful woman you are now: storms, darkness and all.

Yours...

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

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.

Tumblr & Facebook Follower Roundup 2012!!

Last, but most certainly not least, are my Tumblr and Facebook followers!! For a long time, Facebook was all I did. I didn't join Tunblr until one of my posts went viral there. I live on Facebook, especially on my bad days, so a lot of my online friends are there, including my Unicorn Sister---a woman who has my same disease. That's where we met, in fact. So these people are far from an afterthought. They're part of my online family.



Tumblr Followers:

Jump Backwards - I am a 30 year old woman. I have chronic pain. I have a documented history of scans (MRI’s, CAT’s and ultrasounds) no showing what is going on. Doctors depend on the scans to make a diagnosis. So far we are sure that I have a herniated disk and arthritis in my left hip. I had surgery done on my hip to repair a labral tear. I do not believe the surgery was successful because the pain has not changed. But seeing they could never get a scan to show the tear how can we see if it’s fixed? I have been told by many doctors that I need to wait 20 years to have a hip replacement. I have found a job that I can work from home part time. I am successful in that job. I still need help. Where can I turn? The State of Michigan does not have medicaid at this time. At least they aren’t accepting applicants. That leaves me using every penny I earn to provide the medications I need. This is the place for my rant. The American health system doesn’t work. People fall through the cracks every day. I am one of them. // I also have PTSD, anxiety and have been diagnosed with a list of other mental illnesses. Most of those diagnoses are by psychologists who want to diagnose you with something instead of just realizing that you are broken. They don’t need a fancy name to say that people are scary to me. I used to cut. I haven’t in 2 years. Each day is a struggle.

waitforthefireworks - jill.17.cbc.CT, you me at six.mayday parade, Isaiah 43:1-3, Proverbs 3:5-6, i have type one diabetes, adjustment disorder and am recovering from major depressive disorder. however, i'm still thoroughly humorous, 4/28/12 : ) , 1/17/12, a belief in magic can offer solace, even if we know it is a lie.

Myasthenic Musings - My name is Rachel, I’m from Canada, and I’m nineteen years old. I was diagnosed with myasthenia gravis, an autoimmune neuromuscular disorder, in September of 2011. I’m a giant nerd and love biology, science in general, good books, playing piano (badly!), birds (especially my parrotlet), horseback riding, hiking, and photography.

Allison in Migraine Land - Lifetime battle with chronic daily headache and migraine.



Fluidity B



That Girl Named Allysa - This blog was created with the intent of finding other people who struggle with the same mental and emotional problems that I deal with on a daily basis. Recently, I decided that I also wanted to help others with similar struggles.

Arcanum Joviale - Ren. 24. INFJ. Minimalist. Diabetic. Gender neutral. I have been described as: awesome, gorgeous, and down-to-earth. I also get described as "an old soul" and "wise beyond my years." Residing in Allentown, PA.

10-17-96



Whatever Floats Your Boat - This blog here is just a day in the brain of colleen. ! // Colleen is the name. // I wish i was much more simplistic then I am. But that is not my choice. My illness may hold me back but my spirit is free. I love the smell of flowers and rain. I really don't judge unless you give me a reason too. I dislike winter for two reasons. One because its just too dang cold and two, it is really lonely. I am an overall people lover. My goal is to make someone smile each and every day. If i accomplish this it makes my day feel complete, no matter how crappy it is. I am a Youth Ambassador the the UMDF. I like it cause it makes me sounds all professional. I love teddy bears and fuzzy socks. Taylor swift is my hero and always will be for many reasons. My friends and family mean the world to me and i would be completely lost without them.I think that is enough for now or ill ramble on for days. Want to know something......just ASK! // Peace out squirrel scouts!

Oh Baby, Baby, It's a Wild World - I’m Meagan. I’m nineteen, but I still think I’m eighteen. I’m a type one diababy with polycystic kidney disease. I’m an insomniac caffeine addict.
I’m crazy.

My New Normals...Living with MS - My name is Nicole Lemelle. I am a writer, an activist, and a person living with Multiple Sclerosis (MS). I created My New Normals to educate those who do not understand MS, reassure people with similar plights and inspire everyone to seize command of their lives. // I have earned a Bachelor of Science in Microbiology from Louisiana State University, a Bachelor of Science in Nursing from Louisiana State University Health Sciences Center, and a Cardiac Device Technology Certificate from the Arrhythmia Technologies Institute. // My education has allowed me to work as a chemist in Baton Rouge, LA, an ICU staff nurse in Las Vegas, NV, a cardiology charge nurse in New Orleans, LA, and a cardiac device specialist in Washington, DC. // As an MS advocate, I donate my time and support to the National MS Society. I am also a member of the Louisiana State Nurses Association (LSNA) and a Louisiana MS Society Government Relations Committee (GRC) Volunteer. // Since 2011, I have been writing for The National MS Society Blog and my work has appeared in various outlets. // I am married to Tommy Lemelle and we reside in New Orleans, LA.

Colour my life with the chaos of trouble. - Welcome to my mind, // We're all a little insane, // I'm Courtney I'm 15 years old. // I'm from Australia. // Music & reading are crucial to me. // I'm anything but normal, // My head is a horrible place to be // A glorious head f*ck. // I'm b!tchy and sarcastic. //
If you ever need anything at all, no matter the time don't hesitate to message me. // Post Traumatic Stress Disorder // Hopelessly addicted to self destruction. // Anxiety and Type 1 Diabetes

This is just a part I portray. A 20 year old dutch type 1 diabetic ('02) who loves reading (and would love to be able to write well). I'm currently trying to major in Philosophy in the beautiful city of Groningen. Also too much in love with music, tea, Nietzsche, Sartre, the Old Greeks and mountain biking to be in a relationship. Stephen Fry, Tim Minchin and Friedrich Nietzsche are my heroes. I am a volunteer for the DVN (my national diabetes federation).

Laura'S Noggin - This is just a little window into my brain and a look into the world as I see it. I'm a type-one diabetic. I love art; it's my getaway. I someday want to become an art therapist when I'm old an wrinkly. For now I'm trying to learn as much as I can.

I am the mountain, I am the sea - Hi, I’m Raechel Diane. I’m 18 years old and I was born on December 14th. I live in the state of Wisconsin. I dislike it here. I’m a senior in high school with plans to go to Santa Monica College next year. I have a chronic condition called dysautonomia, which you can learn about here. I refuse to let it rule my life.

Jessamyn - My name is Jessamyn, I live in Arkansas. It sucks. // I was diagnosed with Type 1 Diabetes in April of 2006. I also have Crohn’s, Dermatographia, Reynauds and Hashimoto’s Thyroiditis. I am a ball of fun. // I’m pretty boring. I bake a lot. I love indie music. My favorite movie is Love & Other Drugs. I really love art, any kind. I have half green hair and a rabbit tattoo. // If theres other stuff you wanna know about me.. idk. I have my gpoy tag or you can ask me. I’ll try my best to not be weird.


Facebook Followers:

Paula Philips



Lynn MacDonald - It took me a long time to get to where I need to be and now that I am where I am at...I just want to keep watching one of my heroes in life, Jimmy Carter, and listening...really listening...to everyone else - // OH yeah and I must have music exactly how I have had it all along!! // ROCK ON!!

Dianna Blackketter (Dianna Henderson-Blackketter)



Risa Chrysalis - Just a woman who (pretty literally) woke up one day wondering if this was life or a dress rehearsal. Guess what? It's life meant for living. So I'm now living my life instead of waiting for an elusive "something" no one seems to know. ... I tried like the dickens to avoid spinal surgery but finally gave up and had the bloody surgery (although I still occasionally walk like a drunk woman, sometimes, more often than not (but I can wear my heels again).

Heidi Young



Tora Rivallier-Kirk - Tora is not my first name but a name I got after High School. Rivallier is not my birth Last Name but one I should have had all along. I am not fond of the past but there are a few from there I do want to meet. // I am no longer the man you knew from the past but someone that you still remember. I am more in to music then gaming. granted I still play WoW. Just talk to me and see who I am now and you might be surprised.

Lavi Saxena



Nikki Marie Hauser - My son and daughter are the light of my life. Never did I think I would be so willing to give my life for that of another, until they graced mine. // Mother, wife, student,doula, lover, geek, bitch, and so much more... All rolled into one glorious package. // So much all at the same time :D // Stay at Home Mother who is a student, preparing to dive into a new program to graduate with my EMT-I, so I can get working out of the home. As well as a doula. Means I am REALLY busy, and horribly underpaid ;-)

Elizabeth Mizioch-Crawford



Michelle Anderson-Lamb - Program Coordinator II at Medical College of Wisconsin, Studied Sociology at University of Wisconsin–Milwaukee


Jana Bizianes McKinney - I have a very blessed life. I have lived in Louisville all my life but have travelled all over the world. I have 3 living children and one that is holding my spot up in heaven. My husband and kids are the most important and wonderful things in my life. I struggle everyday to deal with and understand my chronic illness....they are my rock and God has truly placed them with me for a reason. We are a good team and I can't imagine my life without them. After all these years (22 now) my sweet Martin still lights my fire...He is wonderful. Everyone should be so lucky to find their one true love. I thank God for him everyday. My Unicorn Sister!

Sandra Elliott - I teach people how to use web data to make their web sites better, and I design new classes. Oh, and now I manage the training and documentation teams as well! Understand, though - I don't speak for my company here. What's here is my opinion.

Christina Carpenter - What is there to say about me that probably has not already been said, said in judgement, or in a jealous anger rage. // There is no other like me, just ask my husband. He will tell you that I am the only one like me, thats why he married me, thats why he loves me, and thats why he picked me. Because to him, I am special. // And lets face it, Im pretty much a big deal in my world.

Paula Cullins



Tim Harris



Tiffany Gonzalez - I'm fighting for my life right now. I have Lyme Disease but I'm trying to beat it. I've had this for over 7 years but have only been in treatment since Oct 2009. I will be ok, because I've come this far, it's keeping up the momentum that difficult. I keep distracted by trying to help others learn about Lyme Disease & the dibilitating Co-Infections which make us very sick. Having help & understanding during the process of Lyme is so important. // You may read about my journey here: www.SusanaManzana.com/tiffanys-story.html or on Facebook:
www.facebook.com/note.php?note_id=378778059365

Jamie Sohn - Forum Host at mymigraineconnection.com, helping fellow migraine and headache sufferers gain more information and become empowered to become partners in their treatment with their doctors. A great site.

Nicole Darnell - Lady Writerly



Wilma Woodson - Wellness Partner with Vitamark International



Debbie Sayers



Cyndi Jordan



Heather Zanitsch - I am a patient advocate coordinator with the National Headache Foundation. I work out of St. Louis, MO to further promote awareness of Migraine disease and other headache disorders. I also try to work at helping others with these disorders to realize that they are not alone and that help and information are here when they need it.

Sandra Kay Prevo Powell



Lexie Scholl



Alice Cossneer - Once upon a time I was a wacky girl/woman who was freaky for any and all sin. one day of lonely fear and massive tears and a hand from above picked her up and now she's freaky and wacky for GOD! // I'm disabled due to the "invisable" illnesses I have so I smile always and try to let the LORD's love shine always. // In case it wasn't too obvious I'm a devout Christian. GOD is first and foremost in my life. I have so much to be thankful for and it is Him I live for and because of Him that I'm alive.

Jennifer Dorfman Pettit - Founder, CEO, UII - Understanding Invisible Illnesses is an organization dedicated to raising awareness of 'invisible' illnesses while providing support to patients & caregivers, through various programs including presentations, activism, social networking, and blogging.

Sherry Rosser Carroll



Heather Cannova



Ellen Schnakenberg - Patient Advocate/Educator, Moderator, Writer for Migraine.com, United States Pain Foundation Ambassador // Migraine.com Community Moderator/Patient Advocate/Educator/Writer, Creating the best and largest online community dedicated exclusively to Migraine and headache. See our articles and discussion boards, hear from expert physicians and patients, or participate in our interactive tools and polls. // WEGO Health Community Leader/Health Activist, WEGO Health Activists: Real life Experience. Real life heroes.

Meagan N Marley Westie



Cate Manzo - Love is never saying you're sorry. // Some say that I am a bit sarcastic.... I can not know what they are talking aobut. I am part Muppet and part Italian. I love more than I hate and I make great snacks and I love spontanaity. I am a good hugger and I love diet coke and beautiful cookies. I love to color and I love to pet fish. I love magic and fireworks. If you're ready for the unusual. If you can stand the color pink and glitter. Ready GO!!!! The Fairy GodMother Collective (a.k.a. Cate the Great!)

Debby Makowski Dietrich



Abe Dickoff - there cannot be change without change // it is what it is



Loretta McCann Bjorvik (Legalize Freedom) (Image used with permission.)



Ada McEwan



Erin Boxley - Erin is now gainfully employed at a reputable Orange County hospital. // I am a nursing school graduate and mother. I live with my family and a mother that's beaten cancer 3 times and has MS. I recently received my RN and am gainfully employed as a neuroscience nurse. This occupies most of my brain power these days, but I am now starting to relax a little into my more permanent roles of mother, caretaker and nurse. // I am already considering my BSN and MSN. Clearly, nursing school left me permanently damaged. // Now I can indulge in my previous hobbies like karaoke, gaming and getting an adequate amount of sleep. // Life is awesome.

Amy Bliss - I'm still myself, I still love those close to me and I'm regaining sanity and confidence. Happy with my children, my relationship and those who love and support me. // "In the midst of winter, I found, within me, an endless summer." Albert Camus

Jacki Clark



Heather Scott Hetler



Laura F McCloskey - My insomnia kicks in.... I'm afraid to sleep because I'm afraid of my dreams! LIFE IS HARD; LIVING IS HARDER! To Judge another is to judge God. Was a stay at home Mom throughout my children's lives. Volunteered all the time and even had to go out and work for a living when things got really hard. Just wish I had continued to work so I would not have the dilemma that I am in right now! Have been married for 35 years, we raised three children, we have no grandchildren. We are not held back by the love we didn't receive in the past, but by the love we're not extending in the present

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This will be an annual tradition from this point forward! These are the people who joined me on my journey in 2012. In May 2013, I will post all the new followers that have come along!

Thank you so much for your support!