Along with this blog, I’ve recently started an instagram account, mainly full of underwater pictures, but every once in a while there are some on dry land! If you want to see a bunch of random, pretty and/or neat, things, (and sometimes my odd self), you should check it out. You can see them to the right, or follow me on instagram below.
Back tomorrow with a new post!
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.
So 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.
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.
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.
thisparadiselife 