Ch-ch-ch-changes!

This past year has been ridiculous. Wild and unexpected and absolutely wonderful, but still ridiculous. Actually, not even a year, it’s really only been these last three months, which makes it all the more ludicrous.

For the past two years we’d been living in South Carolina, with little to no say in where we would be sent next. There are only so many bases that have the type of boat my husband is on, so there were only about ten or twelve possibilities, but they were all so opposite that there was no way to prepare. We submitted a “dream sheet,” a list of our top five choices, with no guarantee that we would get any of them. Our list was Hawaii, Guam, San Diego, Washington state or Georgia. And out of those five only the first three were really dreams, the other two had various issues. Although we would enjoy Washington and have some very good friends there, I would be unable to stay in winter, and most likely would end up moving back down to California for half the year to avoid being in constant pain. As for Georgia, though it is infinitely better, in our opinion, than South Carolina, it is still the south. Simply not our favorite part of the US. Actually, it’s not only south but also east coast, which is two strikes against it for us. We are just west coast people, the laid back, surfer/hippie type. We would have loved to be in California again, San Diego would have basically been going home, but being in the Navy you hope to see a bit more of the world, thus Hawaii and Guam. Physically, warmer, tropical climates are best for me so an island in the Pacific is a perfect fit. Guam has a similar climate to Hawaii but it’s less of a tourist destination so the lifestyle is very different. It would have been interesting to be there but it’s not where we would want to settle. An island where the three things people tend to mention first are the number of strip clubs, bars, and snakes just doesn’t have the same appeal as one with Disney resorts, world famous surfing, and no snakes.

So, as you can imagine, three months ago when we got the news that we’d be moving to Hawaii for the next four to six years, we were beyond overjoyed. Here was a place we could see ourselves, and not just in the short term. As we began researching housing out here we discovered that it is actually cheaper to buy a home than to rent one. When the world tells you that not only are you going to be forced to live on a tropical island paradise but that it would be fiscally responsible to buy a house…well, we would have been insane not to embrace our fate. This is a once in a lifetime opportunity, and not even once in every lifetime, just a very lucky few. You have to learn to recognize when opportunity is knocking because sometimes fear muffles the sound and, just to be sure, it glues your feet to the ground as well. This move has been amazing and beyond my wildest dreams, but it is definitely absolutely terrifying at the same time. It’s partly due to being so far from family and friends, so far from everything I had known, really. And it’s partly due to the speed at which all this happened. Three months ago we received orders to Hawaii, a month and a half ago we arrived, and this morning we signed closing documents on our first home. In two days we will officially be homeowners and residents of Hawaii. There is no way to process all of this so quickly. It’s simply impossible. It still feels like a dream, as if at any moment I’ll wake up back in South Carolina, or worse yet, all the way back in Chicago, never having moved to LA, never having met my husband. Even after three years with him I still can’t believe he’s real so adding moving to paradise into the mix makes me pretty certain that it must all be a dream.

I think it will sink in once we’re moved in and settled, once we’ve started to make this townhouse our home. Right now it’s such a strange state of limbo that we’re in, buying cleaning supplies, furniture, smoke alarms, for a place in which we aren’t living. Our car and hotel room are filled with odds and ends. A massive memory foam mattress in a box nearly my size, a coffee machine and a wet vac, mixed in with snorkel gear, boogie boards and beach umbrellas. All waiting for us to give them a permanent place to live. I’m living a balancing act, juggling a hundred different tasks with not nearly enough hands, trying to time the delivery of our household goods shipment from the mainland, our new furniture, and most importantly, the Internet installer. All the while hoping that we get the keys in time to at least start cleaning before everything arrives. Unfortunately, the people who were renting the place we bought were not the neatest people, to put it mildly. To put it bluntly, they were hoarders, and lived in disgusting conditions. Even the walls are greasy yet sticky, with a thick film of dust coating every inch. They had a dog who chewed up the banister and left a fog of fleas in the backyard, not to mention an unpleasant odor in the carpeted areas. So cleaning is my first and most important task, there are mouse droppings to sweep up, roach carcasses and who knows what else. But underneath all that gross is a house that we can picture making a home out of. I have a list of projects as tall as me, but once they’re all done we’ll really feel like we have settled here. I’ll be posting pictures and projects as we work, I have never attempted most of these things, never had the freedom to change anything permanently about my living space, so I’m very excited.

There has been so much upheaval lately, we have been living in this chaos, this world of unknowns, watching as the light at the end of the tunnel steadily got brighter and brighter. And now we’re almost there, almost out of the tunnel, and I’m anxious, straining to reach the end, that moment when we’ll at long last be in our home, all clean, unpacked…finally home.

This one goes out to all the teachers out there.

Lately I’ve been experiencing this phenomenon of befriending non-parental adults from my childhood. Aunts, uncles, teachers, etc. What has been quite astonishing to me is finding them to have similar beliefs, habits, and passions. It’s not like I knew these people’s politics as a child, but I believe I had a strong sense of who was, simply put, a good person. So I find it interesting that these people I admired and respected so much have so much in common with the person I turned out to be. With the technology available to us now I’m able to get to know these people from another perspective, similar to my evolving relationship with my father just through different means. That somewhat simple relationship of child + adult that is not parent becomes so complex and fulfilling as you age. Facebook is amazing in that way, it allows me to not only connect with these people again but in a format where they feel free to express themselves, their beliefs, their politics. It’s wonderful, finding that these people that left such giant impressions on me as a kid, turn out to actually be good, kind, even brilliant people.

You can’t help but be in awe of some adults as a child. They are just so much bigger than you can imagine. So much older, so much wiser. But then, all of a sudden, you’re the same physical size and they seem to have shrunk. Like going back to your elementary school and seeing how tiny the lockers seem. It’s off-putting, all of a sudden it hits you: shit. I’m an adult. And these people haven’t shrunk, I’m just finally full size! (Or, in my case, as full size as I’m ever going to get, I’m over five feet but only just). It’s overwhelming, even terrifying, that I’m just expected to communicate with them like I’m a normal adult human. They still seem so wise, so together. And so I’m still in awe that I get to talk to them as a sort of peer. And then, to make things even cooler, I find that we have a lot in common, we share so many core beliefs, and it’s just incredible. It’s strangely validating, to like and be liked by someone you have looked up to for so long. These new friendships that have recently sprung up in my life are some of the most rewarding, in that I genuinely enjoy every moment spent with them, whether in person or long distance.

I know that I have been lucky, throughout my life I have had outstanding teachers. I also realize that I may not have been the most normal of children. I generally felt like I was better friends with my teachers than my classmates, I didn’t necessarily always fit in with the other kids. I was always a bookworm and I didn’t like to feel like an outsider so rather than run around the playground at lunch or after school I was usually holed up in a classroom, reading and hanging out with whichever teacher would have me. This meant I spent more one on one time with these adults, and I found comfort in being able to talk to someone who wasn’t, basically, insane. Children my age just weren’t my thing, in elementary school they were lunatics, in middle and high school they became malicious psychopaths. Children can be cruel and violent, they simply don’t understand empathy and so spending time with adults who did made a big impression on me. That may be part of why I so respected and looked up to these people, they were kind, caring, and actually listened to me. Besides that they taught me, they introduced so many amazing things to me, how could I not look up to them? Even into my late twenties, when I decided to go back to school for animation, I found teachers that embodied that same spirit, people who were excited about what they were teaching and in turn made me excited to learn. It’s an incredible feat that some people are able to spread that passion for a subject to so many others. I may be more appreciative of that partially because my family is mainly teachers and professors of some kind of another, but I believe it is mostly because I was lucky enough to have absolutely outstanding teachers myself. Teachers, librarians, choreographers, aunts, uncles…I was surrounded by people who really cared about what they did and about me. And in this day and age I am able to do what earlier generations couldn’t, at this time in my life of realization and understanding, I am able to reconnect with them. I am able to find that we share favorite books, or a similar sense of humor, or, even better, a similar passion for humanity. And best of all, I am able to thank them. As children we take so much for granted and, especially today, with the broken system we have, it’s more important than ever to show our appreciation for the teachers that have made such an impression on us. So to all the teachers of all kinds, to all the adults that have helped me get this far, I say thank you. You had much more effect than you may have realized and because of all of you amazing people I am now a happy, fulfilled adult. That is definitely something worth showing appreciation for.

 

Maternal instinct error. File not found.

There is an issue that is brought up on a very regular basis in my life that causes a lot of discomfort and guilt on my part, even though I have nothing to be ashamed of. It’s the issue of kids, and it’s been a constant point of contention in my life for as long as I can remember.

Here’s the simple facts: I don’t want children. I never have. Not for one moment in thirty two years have I wanted any. Period. End of story. Should be pretty straightforward, right? But I’m in my thirties, married, with no kids. This fact is brought up almost daily and not only brought up, but questioned. And then my choice is disregarded and insulted. I should add, this is not only how I feel, my husband wholeheartedly agrees. Yet, anywhere from family to random strangers on the street will criticize us on this. I’m told, “oh, you’ll change your mind,” and no one seems to think how rude that is, especially to someone you don’t know!

These days I get more frustrated by these conversations than hurt, but my situation is not just one of personal choice. Since I was young I knew I physically couldn’t have children, I have a hormone disorder that requires I stay on birth control, not to mention the fibro medications that are all feto-toxic. When I find myself in these situations, being berated in Waffle House parking lots for my decision, I use my health reasons as my excuse. But that doesn’t make it better. First of all, I shouldn’t need an excuse! It’s my body, my marriage, my life, why is this anyone else’s business in any way? And second of all, even telling complete strangers that I physically cannot have kids, they start rattling off all the other options…there’s adoption, surrogacy, all sorts of fertilization procedures. My response has always been to point out that yes, these are all options, but you need money, a surrogate, and, you know, an urge to have a child in the first place! It’s not a matter of not having options, it’s a matter of not wanting any in the first place. And for some complete strangers to feel that they are not being rude in telling me that my choice is wrong is just ridiculous.

I’ve come up with snappy comebacks, ways to laugh it off and change the subject, my favorite being, “Well, there’s a ten year difference between me and my husband, so by the time he’ll be old enough to want them I’ll be too old to have them!” I find it makes people super uncomfortable and they start talking about something else immediately. But it’s insane, that I need an explanation at all, that I need a joke, a distraction, anything other than to say simply that my reproductive choices are my own.

It’s not that I don’t like any children, there are some pretty cool ones out there. Our niece and nephew are, in my completely unbiased opinion, two of the coolest, most adorable kids that have ever existed. If I can spend time with those two and still not want kids I think it’s a pretty sure thing. To be fair, most kids can be pretty sucky. Some, if not most, of the time. But there are some people out there that were meant to be parents, who have always wanted kids and are happiest in a parental role. More power to those people, I say. I’m just not one of them. I’m one of those selfish people who just wants to do what she wants to do, without having to worry about a tiny person’s well-being all the time. And it is selfish, I make no excuses for that. I love the bejesus out of my husband, and I love the relationship we have. I have no interest in completely disrupting the fabric of our relationship for a tiny human that neither of us want in the first place! I don’t see having kids as having a family. For me, for us, we are all we need. Admittedly, we’re happier when we have cats as well, but just the two of us is what we signed up for and it’s what we choose to continue.

I admire those, like my parents, like my sister, like many of my friends, who choose to have kids. Who choose to put their own wants and needs after those of a child. Because it is something admirable, and it takes an incredible strength of character to raise kids, especially to raise them well. When I look at what our lives could be like with children it’s always an unfair scenario, either to the kid or to us. Our dreams are to live all over the world, to buy a boat and live on that for years at a time. That isn’t fair to a kid. And having a kid that we don’t want instead of a boat we do isn’t fair to us. Even beyond that silly dream of ours, our lifestyle plans are based on the two of us. On being able to up and move if and when we so choose. That isn’t healthy for a child, and restricting our dreams for an unwanted child would just lead to resentment.

So, for oh so many reasons, I will never have children. And, after so many years of feeling like I was somehow failing womankind because of my lack of maternal instinct, I have finally come to terms with it. It is and always was, my choice. And whatever my or any other woman’s reasons and choices, it is never for anyone else to question. So next time you meet some young couple with no children, maybe instead of assuming it’s your place to “correct” their life choices, just high five them and say something that highlights the positive of their situation. Something like, “Awesome! Now you’ll be able to afford a house with a pool!” Or, “Man, lucky you, never having to deal with dirty diapers!” Trust me, they’ll appreciate it.

 

Conversations with my father, part 1

I had a really great talk with my father today that brought up some interesting thoughts. After speaking with him I was left with a feeling of appreciation for the relationship we have and inspiration for today’s post. So here it is!

I have always been a daddy’s girl, but what is wonderful is the way my relationship with my father has evolved over the years. We were always very close, I was a bit of a tomboy and wanted to go fishing and camping with him all the time. My mother and my sister were always very similar, very organized, logical people. My father and I were the goofballs of the family. So we spent a lot of time together, but I wouldn’t say we ever really talked. We would hang out in the same space, happily playing together at whatever, but there were never really any sort of discussions of any depth that I can remember. The heart to heart talks were always with my mother, even though we didn’t always see eye to eye, she was the one who dealt with all the emotional stuff, the one I could go crying to and she would know what to do and say. My dad was never that way, though I never felt less close to him because of it. That was just his way, and I always appreciated it for what it was. But something changed very recently, and it has affected his relationship with me and I believe his relationship with the world in general. It has strengthened my own beliefs about life as well, has made me feel like I am on the right track to leading a fulfilled, happy life.

Some recent background: About a month or so ago at his regular doctor’s visit my father found out he had had a heart attack at some point in the last year. This led to tests and in the end a pacemaker to be put in. All is well, he is up and about like normal, even better, actually. He has lost weight and is exercising, being much more careful of his health. But emotionally it has taken a toll on him. This scare made him evaluate his life, actually look internally and take stock of things, which I doubt he had done for forty years, if ever. And what has seemed to happen is his emotional barriers were destroyed, instead of holding back all emotion and really, all discussion, he is finally letting go and connecting with himself and those around him in a very real, sincere way. It’s an amazing thing to witness, this epiphany in action. He was always easy going but now there is this openness to him. He engages people in conversation, and the conversations are wonderful, deep, insightful, and friendly. He is sincere and open and feels free to experience his emotions instead of bottling them up and putting them away as most men of his generation were raised to do. And this extends to everything, he is more empathetic which affects how he interacts with those around him, whether family, friends, or even random acquaintances. He was always a great storyteller but now he is an active listener as well, and it makes every conversation with him that much more enjoyable.

Personally, this has been an amazing change. The father I always adored and respected is now a very close friend as well. He has become someone to whom I can talk about anything, and I feel at ease, welcomed, appreciated. The best part is that he feels the same about me, we both appreciate this new dynamic so much. He will call just to chat now, and every time we end up having fantastic, long conversations about anything and everything and I hang up feeling more positive and motivated than before.

Today he told me about some conversations he had had with strangers recently that had really been enjoyable and we talked about how easy it is to become cynical when you look at a whole group of people, but how incredibly easy it is to feel optimistic when you focus on just one person at a time. Everyone has their stories, their struggles, their experiences. Everyone is interesting if you take the time to listen to them. We tend to get so wrapped up in all this information that is thrown at us at every moment from a million different sources. But all it does is make us lose sight of the micro. The personal interactions that can be simple but beautiful and uplifting. Because the macro is just too much sometimes, it’s too scary, too mean, too ugly. We can’t save the entire world, so either we ignore the problems or get depressed about them. But a simple interaction with a stranger can produce ripples that affect so much more than we realize. I’m not saying it will fix everything, but it definitely won’t hurt anything. We need to be reminded of others’ humanity constantly or we tend to get narcissistic and lose all empathy. I believe that is what has happened with people like the Koch brothers, or the Walton family. They have lost sight of individual people and so it is easier to allow the greed to take over and step on whoever gets in the way. There is no empathy, no realization that what they are doing is hurting so many, because they are not interacting with the people who are affected. They are isolated from the rest of humanity and because of their wealth and power they are able to take advantage however they like with no repercussions.

Now, I realize that some simple human interaction is not going to make the Koch brothers’ hearts grow like the Grinch, and I have no way of forcing that effect. But I believe that if everyone makes an effort to actually engage someone every day, they will find themselves enriched immeasurably. One conversation with someone random can make all the difference, you can learn something from everyone, and any exchange has the potential to leave you both smiling and in a better mood, which will help carry you both through the day. It makes it easier to believe that most people are in fact decent at heart. Or should I say, most individuals. People in groups can still be assholes.

Being thankful in a world that sometimes sucks

Lately every day it seems like we’re bombarded with horrible news. I fiercely believe in living happily but that doesn’t mean being unaffected or in denial about the world around you. At times I will talk about my opinions regarding controversial topics. I hope to share how my politics are an extension of my character and lifestyle, and I realize that not everyone who reads this blog will agree with me. That’s okay, we don’t all have to agree, but being able to have an open, calm outlet to discuss these things is very important. We can’t fix things if we don’t address them, and there are definitely a lot of things that need fixing.

Here is a quick intro to some of my core beliefs/stances on current issues:
The situation in this country is dire, and I stand very firmly with those people protesting the decision in Ferguson as well as those striking for the right to a living wage. I believe very strongly that corporations are not people and money does not belong in politics. I also believe that, unfortunately, it’s a dangerous and difficult country for certain people, mainly those people that are considered minorities. Which is ridiculous, considering we outnumber the supposed majority. (For those of you who don’t know me, though I look “white” I am actually latina, thus the use of we). I believe this country has amazing potential, it has this beautiful dream, but it seems to be self destructing right now. It’s pretty simple really, as a nation we are wealthy enough that no one should go hungry, homeless, or without medical care. If you work 40 hours a week you should be paid enough to live on. It is a matter of raising one another up so we all stand taller. That means no matter what sex, race, or sexual orientation, we take care of each other. We’re all human.

On to the good stuff

10733965_10205229659810892_6830196014085988086_nSo now that you have a bit of background I’d like to focus on the good stuff, the happy, lucky life I’ve recently been given. As I mentioned, my husband and I just moved to Hawaii, an absolute dream come true for both of us. It is possibly the only place we can imagine loving more than Long Beach, and, upon arrival, it won our hearts. Not to mention my body. The climate is perfect, I am able to be more active again, and the average pain level has dropped quite a bit. When I was living in Chicago I was generally at least at a seven on a one to ten scale of pain. When I moved to California, (on one of my extremely intense and seemingly random urges), it dropped to about a five. Between the climate change, the amazing job and the new love I was in heaven! It was the best I had felt since being diagnosed. Then came South Carolina, which pushed it back up to six or seven, mainly because with the smell, (we lived in a swamp), and the bugs that bit me unmercifully, I didn’t leave the house much. We were also living in an area where no one walked anywhere, there was nothing in walking distance and no crosswalks or bike lanes or anything nearby to make use of. Since we only had one car I just became a hermit, focused more inward and so the pain increased. Physically and mentally it was just not a good place for me. So, when we received orders to Hawaii you can imagine my reaction. It was like being given a second chance to get myself back together, back on track. I had been on the right path in Long Beach but I followed my heart away from it, knowing that it wouldn’t be going anywhere. I’ve always believed that once I found the right person the place and the job wouldn’t matter, places you can always go back to and there are always other jobs. And even as awful as I think South Carolina is, my husband is definitely worth a couple years in a crappy place. Especially when you look at where we are now!

I have always loved moving, there is something so therapeutic about purging all your unnecessary items and starting over somewhere new. It’s stressful but it’s beautiful, it’s a clean slate and an opportunity to restart and renew your enthusiasm for life. By moving to paradise I knew I was getting the ultimate opportunity, to rebuild what has become of my life with fibro. I don’t want to be a hermit anymore, I don’t want to be overweight and in pain all the time. Already I’m down to about a three or four on the pain scale on average. I have bad days that spike it up higher, but with all the activity here lately that’s no surprise. Overall, my baseline here is much lower, which allows me to continue the activity and work towards losing weight and feeling more healthy physically.

It’s incredible how it’s all connected, fibro has forced me to be more aware of my body’s rhythms and cycles. As I’m able to be more active it makes me more legitimately tired so I’m able to sleep soundly most nights. I’m less lethargic and foggy throughout the day, which is an amazing change. The fog that fibro puts you in is awful, it’s like living at a slower speed than the rest of the world. You’re slow to react, slow to think, nearly incoherent at times. What I found to be the scariest part was that when I’m in that fog I have no idea how bad it is. When we finally got me on a medication that worked I saw exactly how slowly my brain had been reacting. I went through brain exercises, before and during the medication and the results were astounding. Simple math problems, especially when timed, were nearly impossible without the meds. And I had no clue until we tested this, I thought I was operating maybe not at my full potential but near it. I thought fibro only affected my body, not my brain. So to find that easy logic puzzles or math problems made me stumble was disconcerting. Disconcerting and depressing. Thankfully the meds cleared that fog away for the most part. On days that the pain is higher my brain clearly functions slower, but nowhere near as bad as before the medication.

Now, with this combination of medication, activity, and sun it seems like maybe I can really start over, be almost like a normal person again. Putting myself in this situation, in this place with this person, is the best thing I have ever done for myself. Physically, emotionally, mentally I have been able to grow and adapt an outlook on everything that is much healthier, not to mention less stressful. Over time, you’d think that keeping up this endless positivity would get draining, but the opposite has happened, I find it is just in my nature now, it is my response to everything. And the more positive I am, the more positive things keep happening to me, and so I am happier and so the cycle keeps building. I don’t shy away from the bad things either, it’s not being in a state of denial, but rather a state of acceptance of both the good and bad in the world. I do get down sometimes, frustrated, hurt, etc. But, as cheesy as it sounds, it really is learning to accept the things we cannot change and changing the things we can. It took a while for that to really hit home for me, but now that it has I finally feel at peace with myself and my situation.

 

Diagnosing fibro. Adventures in medicine.

This is not an easy disorder, not in any way. Living with it is one thing, the diagnosing process is another level of hell altogether.
For me it started when parts of me began to fail, seemingly unrelated to one another. I messed up my Achilles tendon by walking around too much, (it would creak, audibly, if I tried to move it. Super gross. Also, it hurt like crazy). The fluid had apparently started to solidify in the tendon, because why not? Then I developed what one doctor decided was frozen shoulder. Instead of creaking it would click, but pretty much the same deal as the ankle. No idea what caused that. Then, also out of nowhere, my wrist went on strike. At this point I was on a first name basis with every physical therapist in the clinic, hanging out with them four to five times a week. But nothing is getting better, if anything, as the winter progresses, I was getting worse! I was finally referred to an amazing rheumatologist who, working with my equally amazing primary care doctor, started to look at the whole picture. I went through every test they could think up, from x-rays to MRIs,  CT scans to ultrasounds. Luckily they did such a wide range because after one morning’s CT scan I received a call from my primary care doctor. She told me that apparently my appendix was inflamed and we needed to do emergency surgery that same day. Now, I realized this was a life threatening situation, but did it have to be that day? That evening I had tickets to the Bulls game that my boss had given me months before. I had been dreaming of this game, against LeBron and the Cavs, seats just off the floor. But no, my body decided today was the day it would begin it’s new plan of attack. Operation Spontaneous Combustion I think it was called. Luckily, my doctor was on top of things and thwarted the first attack, and LeBron didn’t even play, just watched us kick their butts from the sidelines. So it could have been worse.

After recovering from the surgery I went back to my rheumatologist to discuss the results of all the tests. He ruled out rheumatoid arthritis, celiac disease, and a bunch of other, more reasonable disorders. Finally he said there was one more test to try, now that everything else was off the table. And he proceeded to push me, with his fingers, on eighteen points of my body. You read that correctly. Each point he asked if it hurt, at each point it did. And that was it. That is the test. If you hurt in at least 11 of the points then fibro it is! It does make sense that this is the last “test” they do, once everything that may be a possibility is ruled out, but this whole process just makes you feel insane. As each test comes back negative you fear more and more that maybe you’re just crazy, maybe everyone feels like this and you’re the only one who can’t take it. You have these late night inner monologues that revolve around the conundrum, do hypochondriacs know they’re hypochondriacs? And then, finally, the one test that comes back positive…and that’s it? All those fancy machines and technologies and the answer could only be found by poking me like a little sister in the back seat of long car trips?

But, at least I had an answer, even if not much is known about this disorder, it’s still something. Every year they learn more and the treatments and the tests will get better, but for now this is what we’re stuck with. It’s hard not to laugh at the situation, or cry, but I like to choose laughter. This disorder won’t kill me, it will just make life more difficult, so focusing on the ridiculousness of it all makes it easier to handle. Of course, there are days it is easier to laugh than others, and looking back at the beginning of this experience is a lot more pleasant than when I was living through it. At least now I’m on medications that keep it relatively under control without crazy side effects, and for the most part I’ve learned how to read my own inner body language, so it’s nothing I can’t handle. Some days are better than others and today is a good day, so I’m going to go enjoy it.

New beginnings

Something surprising happened to me today, for the first time in possibly my entire life, I found myself looking down at my body and loving what I saw. On the day before my 32nd birthday, on the day of my mother’s 62nd, I finally figured it out.

A quick recap, for those of you new to my recent life: At 27 I was living in Chicago and was diagnosed with Fibromyalgia. I ended up losing pretty much everything, health, apartment, job, hair. Just about the only thing I gained was weight. A ton of it. Decided to go back to school for animation, chased that dream to LA, ended up falling in love with Long Beach, falling in love with a sailor, feeling physically better in the warm climate, becoming more active, losing a ton of weight, marrying, moving to a horrible swamp for 2 years, becoming a hermit, gaining it all back…when all of a sudden BAM. We get orders to paradise. Our first choice, Hawai’i. The only place we can imagine loving more than Long Beach. Two days before our wedding anniversary, three weeks before my birthday, we land in Honolulu.
My husband had three weeks of leave so we spent that time house-hunting, snorkeling, boogie boarding. We found a house, started the paperwork, hit the beach every day.  We’ll be staying in a hotel for two months at least, the earliest we expect to close. So we’re here but in no way settled, it still feels like a vacation that will have to end. Tomorrow he goes to work, I celebrate my birthday and begin to figure out what my normal life will be.

Back to why I had my epiphany, and what prompted it. For my birthday my husband got us scuba certification courses and it required two full days of actual diving and four of study. The study part, no problem. But when it came to the diving I had my quiet fears about it. I’ve started to lose weight and get in better shape, but I’m not back to normal by any means. Most physical activity is difficult because most of me hurts; as a general rule at any given time at least one joint and as many as all of my joints and possibly all the rest of my body is hurting. Every moment, every single moment of my consciousness I am feeling pain to some degree. For the most part I have learned to cope with it, (it helps that I allow myself 5 cheat days a year when I get to complain), so it’s manageable. Not fun, but I won’t die. More on that later.

So scuba, one of the most amazing and beautiful things I’d ever gotten to do, would be hard to lose to this stupid, ugly disorder. But I put my heart and mind over my body’s complaining and I triumphed! This body that has seemed to betray me so often, (side note, for years I was a ballerina, which I had to give up when I developed bursitis and this nasty habit of having my hips randomly pop out of joint), might not be a totally lost cause! I know as I start to lose weight everything will get easier, but even now, at my worst, I can still do this activity that I love. So, after returning to our temporary apart-hotel I found myself exhausted but awake as my husband napped before a celebratory steak dinner. I decided to sit out on the balcony to enjoy the sunset and found myself looking down at my body and, incredibly, liking it. I found I actually love it, all its scars and stretch marks, its funny tiny hands and feet, and all its artwork. I love that each tattoo encompasses an event, a memory, a chapter of my life. I love that my favorite ones, and I think the most beautiful, came at times that I was in ugly places, either personally or physically. I love the entire package, finally. Credit where credit is due, this is in huge part because my husband has opened my eyes. By loving this body and this woman inside it, seeing it as a whole, body completely inseparable from mind, he has let me stop seeing any of it as a flaw. It is all just part of me. He loves all of me so completely that I have started believing him, even beaten up, broken, exhausted, chubby, in miserable pain, I believe that I’m beautiful and worthy of that love. So now, after 3 years with him, with constant, overwhelming and patient love, I finally have internalized it. I look down and what I see is beauty.

This is such a new sensation, mainly because the fibro has so derailed any positive thought I may have had about myself. It isn’t just the positive thoughts, but almost any thought at all, the fibro takes precedence over everything, it forces you to focus on it, always keeping you off balance and in pain. It is like a tightrope walk on fraying rope, but I no longer feel so angry and frustrated by it. I have come to accept that this is just how my life will be and that it will be a balancing act, some days I will be able to handle anything and everything, and some days I won’t. The difficult part is that I will never be able to completely anticipate the effects of a certain activity, because it’s not just the activity itself that determines the fibro’s response. It’s also hugely affected by the current amount of stress I’m carrying around, that I may be completely unaware of. Because it’s not just bad things that cause stress, but good things too. Moving to paradise is possibly the best thing that has ever happened to me, after meeting my husband, of course. But it is stressful beyond belief! Buying a house in paradise, exciting, right? Yes! Stressful? Hell yes! So basically, what that all means is that each morning is a surprise. All these different variables, both known and unknown, add up to make my day. I could wake up and feel fantastic, raring to go, or I could find myself waking up in so much pain there is no choice but to stay in bed 95% of the day. I’m extremely lucky that my husband is able to support me working as a freelance artist and I can afford to take a day off if needed, and there are even a few things I can do from bed, ảla Frida Kahlo. That luxury is probably the most important factor for managing this disorder. Because even after waking up, there are no guarantees as to how the rest of the day will go. At any moment my knee will just decide that nope, it doesn’t want to just quietly exist in the middle of my leg, it wants to torture me from the inside. Or my elbows will decide I was bending them slightly too much and take it out on me as if I had murdered their entire families. (My joints all have families that I regularly threaten in horrific fashion when they act up, it doesn’t really do anything but I had no luck with begging either and this is more emotionally satisfying). Anyway, generally once a joint starts to act up then that’s it for the day, there is no getting out of that pain. I can shove it aside as much as I possible, but every single decision for the rest of the day has to factor it in. So after spending the whole day either mostly pain free or mostly painful, you’d think ah, at least she can sleep and start over again tomorrow! And that’s where you’d be wrong. Because here again, there are no guarantees, no way to know how I’ll sleep. I could be exhausted and find myself tossing and turning for hours before finally dropping off around 4am for twenty minutes, and that might be all I get. Or I could sleep the whole night through, if I’m really lucky. Guess which happens more often. And of course, if I don’t sleep well, then that turns up the pain automatically for the next day. Starts me off in bad shape and leaves me no way to get better. So I spend the whole day in pain, finally get to bed, can’t sleep because everything hurts. I have never been able to sleep straight up and down, I curl up, and that means my elbows and knees are bent, which means they feel like they’re on fire after 5 minutes. It’s hard to sleep when they are that bad, (and blatantly ignoring my threats), so I spend another night with little to no sleep and wake up even worse than the day before. And it starts all over again.

That’s why any frustration I feel with this disorder is largely warranted, because that cycle is my every day. It’s possible to break it, for a time at least. With luck, and a hell of a lot of willpower. But it never completely goes away, that threat is always there looming over my shoulder. Or in my shoulder, I guess. Some days I win, some days the fibro does, that’s just the situation I am in. Every day I do everything I can to lessen my pain, and I hope. I find that the more I focus on the good the happier I am. The happier I am the less stressed I am. The less stress, the less pain. And so on and so on. I can turn that vicious cycle to my advantage. Moving here was the best thing I could have done, so many different factors fall in my favor. The climate is perfect, warm all the time, tons of sun, beautiful to look at. I am vitamin D deficient so living somewhere that it is pleasant to be outside and where it is sunny constantly is exactly what I need. But beyond that the Hawaiian spirit is a huge factor too. These are a people who understand focusing on the positive in life, slowing down and enjoying all that it has to offer.

So that’s why I started this blog, to share my thoughts and my experiences, the lessons I’ve learned about life in general and life with fibromyalgia in specific. It will be a bit of a hodge podge because that’s just how I am, but I will consider it successful if I can make anyone smile and laugh. And hey, if you learn something about what people suffering from fibro are going through in the meantime, that’d be pretty cool too.