In the Grand Scale of Things

The title is a bit tongue in cheek today because the little wildflowers are anything but “grand” in scale! But these tiny flower bouquets, that seem to crop up out of nowhere, add a lovely bit of color to the woods and can be such a joy to ponder. They can feel grand in essence despite their diminutive physical presence.

These little yellow flowers are abound during the spring season in a swampy wooded area I like to walk in whenever the weather isn’t oppressively hot. That isn’t very much of the year when one lives in the sub-tropics, so I really have to make the most of the time I have! That they are spring flowers should be no surprise given their bright as sun yellow color.

I find it sad how most people walk past these little beauties without a thought, only to behold the tall, defiant cypresses that grow in the same area. The latter are majestic and worthy of looking up to (and I mean literally, for these trees can be really tall), but in many ways, I prefer the delicateness of the former. The flowers just feel “happier” to me somehow.

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Do you see that little fuzzy ball on the bottom right? I’ve no clue what it is but it’s so cute!

That is so much of life, isn’t it? Especially with a chronic illness. When the good days are few and far apart, we try to make the most of what we’ve got. When the big goals seem too far beyond reach, we focus on the smaller ones. We learn to find joy in the smallest of things.

It sounds like a compromise, and everyone makes some compromises in life at some point or another. But when you’re young, you face judgement from ignorant faces, who are not intimate with your trials, but who feel you have made that compromise too soon in life. You’re left to wonder if you are getting “too comfortable too early” (in my Ph.D. advisor’s words) too close to the ground.

Or is it simply that you have realized that the things that mean the most to you are exactly where you are. That true happiness really is in the smallest, the most seemingly insignificant of things. And that when we reach for the heights, it is usually only to attain something of an illusion – an illusion of power, of respectability, of security. And during that process, as we are looking up at the heights, like that of the cypresses, we miss all the joyful little wildflowers that beckon to us from down below.

In a quiet, meditative moment, it may be wise to wonder: In the grand scale of things, which one matters more?

In the last few weeks, I have gone through another round internal conflict in trying to balance the part of me that wants to reach for the heights, and the part of me that sees sense in drawing the energy from the wildflowers. I concluded that the little joys of the present outweigh the potential of illusory powers in the future. While it is true that I would find much joy in making the best use of my scientific training to benefit society, I had to admit in a moment of honesty, that I would find more joy in not feeling like absolute crap while doing it! This meant finding a line of work that may be “closer to the ground” but more in line with my priorities.

None of this is to say I still don’t have that ambitious spark which would like to see me accomplish big, important things in life. But for now, I feel like just getting through my new exercise routine, without the excess fatigue grounding me in bed for the next several days, would be accomplishment enough for me!

Gentle hugs,

Fibronacci

Seize Each Moment

Life has taught me many new lessons since I developed fibromyalgia. Perhaps one of the most important ones is to seize each moment while I still have it. You never know how long a good period will last. Do not put off for tomorrow what you might have the chance to do today.

I do not mean the statement above as a call to action on a good day. I know only too well how that can result in overwork and a subsequent flare. I mean it over a much longer time, sort of taking a bird’s eye view of my life so far.

A heightened pain response and reduced energy quotient with FM has meant that many of the things I used to be able to do are now off-limits. Yet reminiscing about my past abilities do not cause me nearly as much grief, as does the regret over not making better use of my healthy years while I had them!

There were so many things I had always wanted to do! Most of those things did not need to happen right then. They were just hobbies or skills I wanted to develop for fun – like horse-riding, scuba-diving, and many others. None of them made any direct impact on my education or career. So for a long time I put them on the back-burner and focused on school, on building a career, on all the “adult” things that you are supposed to do.

We do that a lot, don’t we? We put off the things that are for pleasure in order to tend to the necessities of the moment. After all, there will always be time for pleasure “later”!

I too felt I could always do those things later – later, when I am more settled, have more free time, and more expendable income. I was young and healthy, and felt time was on my side.

But how utterly wrong I was! 

My first realization of this came a couple of years ago when I got into archery. I enjoyed practicing the stances and getting the form right, more than simply hitting the target (which I was pretty miserable at but felt would improve as my form got better). I never got that far though. Soon, my muscles started to react violently to my drawing and shooting. The fatigue was often debilitating at the end of a practice session. After a few months of struggling through, I was forced to largely give it up.

Since then, the dominoes have continued to fall. I found that sitting astride a horse, even for a few minutes, is quite painful for me now. Hence I am forced to face that any equestrian dreams I may ever have had must now be buried as well. Then there is my long-held dream of scuba diving . . . I can barely even carry my purse for a few hours without my shoulders getting angry with me, so carrying scuba gear feels out of the question at the moment!

The recognition that I may never be able to dive hit me the hardest, because I was finally so close to having the time and the money to do it! Though the schools I looked into were more worried about my asthma – most seemed to not even know what fibromyalgia is – I knew the latter was going to be a much bigger problem for me. Right around the time I started looking into training programs for scuba diving, it seemed like Ms. Fibro stopped being a house guest and had decided to move in for good. It is hard not to feel the unfairness of it when you reach a finish line of sorts, and after you get there, the powers that be decide to move it farther back, somewhere beyond the horizon.

Yet, I feel I cannot give up! I must strive on to the next finish line, wherever that may be! When there feels every reason to just stop in my tracks, I am driven on by hope.

The hope is on many levels for me. On one level, I hope that one day I may still be able to get scuba lessons, or ride horses for short periods of time. On a deeper level, I hope that I can treat my run-in with fibromyalgia as just another bend in the road of my life. I have always hungered for new and varied experiences; so I hope that I can cherish the current one with FM, and learn from it; maybe one day even rise above it.

And for all future dreams and desires, I hope to know better than to think that I will always have the time for them “later.”

I hope to be able to seize each moment I have, and make the most of them, regardless of the moment itself!

Love,

Fibronacci

Weekly Photo Challenge: Fun

I know I have shared this painting before in my post about humor for pain management. But it was just too appropriate for this week’s photo challenge theme, so bear with me one more time!

For those who don’t know the story behind this painting, I have described it in detail in my original post (linked above), but here is a short version:

On a recent vacation with my friend’s two young daughters, my husband and the girls decided to play a silly joke on the server by dropping all our spoons in our glasses. The confused look on the server’s face as she tried to gauge the bizarre situation without letting it show in her voice was classic! It was a supremely dumb joke that then became a bit of the tradition with the girls. And since then they have sending us spoons-in-glasses pics from many of the restaurants they now visit.

In order to commemorate the birth of a new dumb tradition, I painted them the picture in the featured image and called it “The In-Joke” (for obvious reasons, since few who weren’t there to witness the event are likely to see the humor in it).

The real reason I wanted to share the painting and the associated story again is this:

I read a beautiful article today on Light Everyday about how we often fail to realize how much fun we are having, all the time, in the course of living our lives, because we get so caught up in the preconceived notions we hold of what “fun” should look like.

At my age, a “fun” vacation is marketed to look either like a luxurious girls-time-out in a beach-side spa resort with a snazzy nightlife, or an adventurous backpacking trip across the mountains at the end of which you are supposed to “find yourself” (whatever that means). Not dropping spoons in glasses with two young children at a tiny diner on a family vacation, as I squirm on the chair to try to ease my pain best I can! Yet that was one of the funnest vacations I have ever been on, and that particular memory is one of my most cherished ever, and one that we keep referring back to every time we eat out!

My current point of view, however, is relatively newly developed. For a long time, in my past life as a healthy person, I was also blinded by what “fun” should look like. And I resented the fact that I never had enough money or the personality to have it!

It is unfortunate that I had to develop a chronic illness to lift that veil off my face and finally see how much fun I was having everyday, just doing everyday things, nothing special or out of the way.

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I have fun every day, just hanging around the house with my husband, sometimes in different rooms with each doing different things, or watching TV shows/films together in bed. Nothing we do looks like “fun” – in fact we might be the definition of “boring” – but it has been a fun life for us in our own way!

Calvin-and-Hobbes-Summer-Vacation-Comic

As I keep coming back to this idea of finding the good things that fibromyalgia has brought into my life, finding joy in small things is definitely one of the big ones! I feel very lucky to have been given the opportunity, even if it came disguised as fibromyalgia, to realize just how much fun my life is!

Love,

Fibronacci

Questions I have for Fibromyalgia

As a scientist suffering from a poorly understood condition and as a patient frustrated by its unpredictability, I have spent many miserable days and nights wondering about the many idiosyncrasies of fibromyalgia. On sleepless nights, the patient in me has a conversation such as below with the scientist in me:

Patient: Why does bad weather (actually, a change in temperature/pressure in any direction) make my symptoms worse?

Scientist: Do humans have atmospheric sensors in their body like some animals? How does that signaling work to affect pain perception?

Patient: Why does the pain get worse during my periods?

Scientist: What is the connection between hormonal levels and pain signaling?

PatientWhy does the pain get worse at night, right when I am trying to sleep?

Scientist: Is there any connection between the circadian rhythm and pain sensitivity/signaling? If so, what is it?

PatientI wish I could sleep . . . I am so tired . . . (poor sleep makes pain and fatigue worse)

ScientistIs there a feedback loop between the circadian rhythm and pain sensitivity? Why do patients with fibromyalgia experience alpha intrusions and not get restful sleep?

And the quintessential:

Patient: Why me? (yes, I know it’s cliche)

Scientist: What causes inter-individual variation in pain sensitivity? What genes are involved in those pathways and how does environment play a role in the development of the chronic illness?

As an epigeneticist (one who studies modifications on genes responsible for fine-tuning their function), that last question is especially close to my heart. I have a suspicion that a significant fraction of the population is probably born with genes that make them sensitive to pain perception. But only 2-4% of the U.S. population has fibromyalgia. So what factors are involved in determining who with the disposition actually develops the condition?

These are just questions for now. I have no answers for most (if not all) of them. But we need to find the answers. The more answers we have, the better we can treat ourselves, future patients, and perhaps even take preventative steps. So until then, perhaps that “why me” question is worth asking after all!

Love,

Fibronacci

Mind Over Body

The idea of mind over body involves the use of thought processes to make our bodies do things that it would otherwise find nearly impossible to do. As a fibromyalgiac, I recognize its usefulness at times in order to accomplish tasks at hand despite the pain and lack of energy, yet I cannot deny having mixed feelings about it.

What kind of power does the mind really have over the body?

1. The mind has the power to distract you from the pain. I find if I am focused on something intently, I give less attention to the pain. It is especially true if I am engaged in art or humor, as these have an almost cathartic effect on me. This allows me to achieve some level of normalcy in my daily life. In turn, the activities that I focus my energies on shape my identity as more than just a fibromyalgiac. And some self-deprecating humor can help me talk about my problems, while (somewhat bizarrely) retaining more dignity than if I were to simply complain about it.

2. The mind is a source of reserve energy. Besides my regular daily dose of energy, I have always known of a secret well that I can drink from in times of urgent need or emergencies. During my intensive teaching workshop last week, I made good use of it. The timings of the sessions were such that I was forced to start moving before I had a chance to fully thaw in the mornings, and keep pushing myself for over 10 hours without much of a break. I am somewhat surprised that I made it through without collapsing in the middle of it, and don’t think I could have done it without my reserve energy source.

So what kind of power does the body have over the mind?

1. When the body speaks, a wise mind must listen. For the body has the last say.

Under times of duress, the body may be able to use the reserve energy from the mind and distract one from the pain in order to accomplish the task at hand. But that energy well is not bottomless. It needs time and rest to replenish. The mind might hide the pain from your conscious awareness, but body still feels it and the lack of rest takes a toll on it. The body cannot be bullied forever, and will eventually fight back.

All through high school until the early years of graduate school, I refused to listen to the alarm signals my body sent out regarding its condition. I ignored the little aches and pain and pangs of fatigue, until it developed into full-blown fibromyalgia. I was recently speaking with a colleague whose mother suffers from the same condition – and she was wise enough to listen to the alarm bells when they tolled, and is better off today than I am.

Even with fibromyalgia, I had to learn the hard way to not allow my mind to regularly push my body too far. Until then, I often found myself at the bottom of the reserve energy well, and then felt like the frog who keeps sliding back down each time he tries to climb up its slippery walls. Now I try to listen better when my body cries out for rest, or medication, though my mind may not always agree with it.

Be mindful of the use of your mind over body tactics

Our body may be the most precious physical possession that we have. It is worth treating with love and care. But as with all physical possessions, we cannot attach too much importance to it necessarily. It is worthwhile taking a few scuffs and scratches in our stride, as long as it is not too damaged. Unlike perhaps most of our other physical possessions, we cannot do without this one – not during the lifetime anyway – and that is worth remembering.

Do not let the mind bully your body!

Love,

Fibronacci

Life and Death

Lately I’ve been thinking a lot about my life and death. Not in a suicidal or terminal kind of way. Just in more philosophical terms.

Featured image: Guided by the Lights (8X10, oil on canvas)

In many ways, a lot of my old dreams and old personality traits have died a slow ignominious death. At one time, I could see the course of my life from a bird’s eye view. I could see a path ahead of me, and a goal to work towards. I derived a lot of pleasure and satisfaction from my work as a scientist. I was diligent and good at what I did, and was duly appreciated and respected for it. I had a plan chalked out for what I wanted to do after graduate school and never doubted that I would be able to get there. I had non-work related dreams too – like training to be a scuba diver for instance. Now all of those thoughts and plans are buried somewhere under the ground. Perhaps, so is the appreciation and respect that I had once earned, along with a slice of my confidence pie.

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Those dead leaves might well be the remnants of my old dreams.

Yet in other ways, I have emerged at the opposite end alive and still mostly kicking (figuratively anyway!). I am having to take my life more one day at a time, which can be stressful when trying to plan a career, but quite nice in other ways. It gives me time to slow down and enjoy what I have today, in this moment, before I start thinking about the future. Even though I have had to steer my life in a different direction mid-stride, I have not let go of all my dreams . . . though I have had to modify them quite a bit. I have learned to be OK with the fact that I may not have a single career goal that I could strive towards. They may have to evolve with time, depending on how my body behaves. I may never be able to get the scuba diving certification, but at least my current life pattern is such that I might have the moment to just enjoy the sight of the ocean with my husband. I am not sure that previously I would have made the time, or that we would have had the connection, to be able to derive pleasure from such simplicity, just from being in each other’s company. With the slow demise of my workaholic uber-independent self is coming the rise of a more balanced person, who is learning to slow down and accept a little help once in a while.

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And those bright little flowers, tentatively pointing to the sun, might be my new life.

I don’t think I have yet come to terms fully with letting go of my old life, dreams, abilities, etc. But I recognize that a new me is trying to rise like a phoenix out of the ashes. And I am trying to do things and think thoughts that would encourage its rebirth. I believe that everybody needs to make some of sort of journey during their lives. I suppose this is mine. My chance to die and be reborn into a new person. One day, I might get there. Until then, I thank you all – my readers – for accompanying and supporting me through it.

Love,

Fibronacci

It’s Not Been All Bad

Dealing with a chronic illness can take up so much energy and command so much of our attention throughout the day that it is easy to get lost in the trees blocking our path. But every now and then, I like to be able to take a step back and look at the forest through the trees, the big picture of my life. . . and then, things don’t seem nearly as bad as they do on a day-to-day basis. So I thought it was high time that I started thinking of some of the better things that fibromyalgia has brought in my life.

Featured painting: Forest Through The Trees-II (16X20, oil on canvas)

Here are my top 5!

1. Ability to notice and be grateful for the tiniest little pleasures in my life.

This is the perhaps the biggest and most important gift that I have been given by a chronic pain condition. Here’s an example that illustrates my point:

A few days ago, I had taken enough tramadol before going to bed that I had little sensation of pain even upon waking. That feeling, of waking without pain, is such a distant memory that, at first, I thought I was dreaming and not really awake! And then it occurred to me that I had woken up most of my life like this – not in pain – and I had never noticed what a pleasure that was; I had taken it completely for granted. Well, not anymore! I can count on one hand the number of days in the last year that I have woken up with practically no pain or stiffness, and I am immensely grateful for each of them.

2. Reconnecting with my husband in a very special way.

I think this is right up there, sharing the #1 spot. For some time now, I have had a difficult time balancing my work with my life, and it took a strong turn of events for me to prioritize him again over all else. I had taken him so much for granted that I had forgotten how special he was to me. My struggle with fibromyalgia has served to bring us closer than we have ever been. He has been my pillar of strength and a rock for me to lean on (both figuratively and literally, I might add) in my roughest times. I cannot begin to express how grateful I am to have him in my life!

3. Realizing that work doesn’t have to be my life.

For the better part of the last half-decade, I have been a bit of a workaholic. A large part of that was because I actually enjoyed my work (and still do), but because I spent so much time working, I was starting to invest too many of my identity-eggs in that one basket. Fibromyalgia forced me to take time off from work and made me realize that I am more than just a biologist; I am more than just my work. My identity as a scientist and a teacher is just one aspect of me, but I have many other interests as well. I also learned to be more flexible with both my commitment to my work, as well as my career choices in the future, knowing that however things turn out, I will still have other identity-eggs in other baskets.

4. Reconnecting with the “other side” of me.

Another consequence of spending a long time working in a left-brain oriented manner was that I was feeling “lefted-out,” i.e. feeling locked in the left side of my brain, incapable of connecting with the more spontaneous, free-flowing, right side of my brain. Pure reasoning is an exercise in frustration when it comes to making sense of chronic pain, especially at a young age. That kind of approach is not conducive to being able to accept the current condition and “roll with it.” As I engaged more in art and meditation, I felt more capable of connecting with the right side of my brain. In doing so, I have been able to feel more whole as a person, and was able to embrace a lot more than what the solely analytical part of my mind could handle.

5. Learning to prioritize and delegate.

iceberg_2Compared to the top 4, this one might seem a small one. In truth, however, “prioritizing and delegating” is just the top of the iceberg. There is much more to it underneath, as depicted in the image to the right, in order for that approach to work. In short, fibromyalgia has taught me more lessons in mentoring than any workshop I have ever attended!

I guess this just goes to show that every cloud does have a silver lining, though sometimes I may have to look for it a little harder. Once I find it though, it brings me much hope and happiness, and often when I need it the most!

Love,

Fibronacci

It’s the Little Things… (Part II)

A few days ago, I wrote a blog post with the same title where I complained about a bad day. But just as some little things can bring you down, other little things can bring you back up! And this is one of those other little things!

Yesterday, I was able to help move and set up some poster boards on table, which I am really pumped about! They were not super heavy but it did involve some carrying, dragging, pushing, lifting, etc. – basically a bunch of repetitive tasks – which are generally troublesome for me. My arms and shoulders did ache like hell later and I felt the stabbing pains at the trigger points on my back, but I was able to manage the pain with heat alone (I was determined to not have to take a tramadol that day for the first time in a couple of weeks). To add to that, I even managed to teach two classes back-to-back. I had to stay under a heating blanket the rest of the evening, but again, no tramadol – so hurray!!

It’s been a crazy couple of days at work so I am really grateful that I am not back in a flare already. I have had a ton of proverbial fires to put out in preparation for an undergraduate poster session that my students are participating in. My mentee in the lab (also an undergraduate student) presented his data at lab meeting today, so I have been helping him last couple of days with that as well. So then when my physical therapist asked me today how I felt, and I could say that my pain levels were only at 2-3, I was ecstatic indeed!

I am trying not to overdo things though. I often end up feeling like my good days are like $10 gift cards, which save me nothing and only encourage me to overspend! Except in this case, it is my energy I am spending, instead of money. I even wrote a whole blog post about that once (linked above)! But I am determined to not do that today. I took out an hour of rest time between work, physical therapy, and back to work. I hope that helps conserve my energy a bit better.

I know better than to expect this kind of goodness to last too long, but I am certainly enjoying the moment while I am in it right now!

Love,

Fibronacci

Meditation for Pain Management

I read a paper recently by Mark Collen (founder of PainExhibit.org, an interesting collection of art made by artists with chronic pain, expressing some aspect of their pain), where he recommends a holistic approach to pain management. He suggests taking a “daily SWEM – socialize, work, exercise and meditate,” along with your pain medication, to manage chronic pain. He calls it the biopsychosocial model, because it involves aspects of pain biology, and the social and psychological well-being of the person suffering from the pain.

For the largest part, I like what the article talks about, and I agree with it. Hanging out with friends (socializing) or getting in work mode to find some engagement and routine certainly sound like reasonable distractions to help cheer you up, not feel isolated and feel accomplished towards some purpose. Exercising has also been shown before to improve mobility (or at least reduce the rate of its decline) in patients with chronic pain. [I will give a personal update of my aquatic physical therapy sessions soon in another blog post.] But while they are all good advice, the article did not give many tips on how to practice some of these ideas. That is perhaps the biggest drawback of the article, because I could see many with severe chronic pain not being able to leave the house to work, socialize or exercise.

This is why I like his last advice the best – meditate! This is something one can do anywhere, even laying in bed moaning in pain.

Featured image: One of my original oils on a 7X14 canvas, titled Sun Meditation.

I have personally used three types of meditation with good results: deep relaxation, guided imagery and mindfulness meditation. I have given a brief account of my experience with each below, along with links to some of my favorite videos for each.

Deep Relaxation

I find this especially nice in the middle of the day when the stresses are starting to build up, my pain levels are starting to rise from lack of rest-time at work, and my energy levels are flagging. A ten-minute guided relaxation meditation helps me feel calmer and more grounded, helping to release some of the tension and adding just enough energy to make it through the rest of the day.

Guided Imagery

I use this a lot in the mornings before I have shape-shifted from the tin-man into my human form, to help with the pain and stiffness so I can get on with my day. Basically, you are guided into imagining an interaction with your pain and dealing with it as an object. Along with helping me to relax, I actually find this helps reduce pain levels at least temporarily! At first, I almost always find the pain rises when I focus on it, but then as I continue, its intensity decreases. This surprised me at first because I wasn’t expecting it to work as good.

I have a couple of favorites for this type of meditation: a short ten-minute version (which I use in the mornings) and a longer 1-hour version by Michael Sealy, which I use at night. Sealy calls it “sleep hypnosis” but it’s really all the same I find! Incidentally, as a plus, the latter does also help me fall asleep!!

Mindfulness Meditation

This is probably the type of meditation with the most amount of research behind it showing its efficacy. Mindfulness is the way to live in the present moment – not worry about the past or the future, not try to change anything – just observe what is going on without passing any judgement on it. This is something that takes a lot of practice at first. At some point, it is supposed to become second-nature, but I have not achieved this regarding all aspects of my life just yet. This is useful when I am in serious pain and wanting to throw me a pity-party. A lot of the stress and self-pity comes from worrying about what the pain has done to you (and your plans) in the past and how it will affect your future. Just being in the moment and acknowledging the pain, but not passing any judgement regarding it, is curiously freeing. I am learning to do more and more of this and just taking one day at a time, without stressing about the future, and acknowledging the state of things without judging its impact on me. As you can imagine, I don’t succeed at this at all times but I try!!

Michael Sealy has a short video to help you get started on mindfulness meditation, if you feel so inclined, but this type of meditation is really not best done “guided.” It is useful to read about it and practice it by yourself. “Mindfulness: An 8-week plan for finding peace in a frantic world” by Mark Williams and Danny Penman is one of the books that might make for a great starting point.

These are just my coping strategies, I don’t know if they will help others or not. But just in case anyone wanted to try it out, I hope this helps them get started. You never know what helps until you try it out! I was certainly surprised by how well some of these worked. And now meditation has become one of the go-to tools in my arsenal!

Love,

Fibronacci

P.S. If you are interested in reading the paper I mentioned in the post by Mark Collen, it is called “Operationalizing Pain Treatment in the Biopsychosocial Model: Take a Daily “SWEM”—Socialize, Work, Exercise, Meditate” and was published in the Journal of Pain & Palliative Care Pharmacotherapy in 2015. It is a pretty easy read despite the mouthful title!

Twilight Ventures

Twilight offers a certain mysterious atmosphere that I have always been attracted to. Maybe it is an outward reflection of my mysterious nature . . . who knows? Or maybe I am just waxing poetic!

Fun fact: I almost called my alias Twilight Princess after my love for the twilight time of day and my favorite video game from the Adventure of Link saga!

I used the red cloudy night from one of the above pictures as inspiration for this painting below. I called it Crimson Night (12X12, oil on gallery-wrapped canvas).

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Crimson Night

This one (below) was painted at a slightly earlier time in the evening: Lights on the Lake (8X10, oil on canvas panel).

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Lights on the Lake

The beauty that surrounds us even in the midst of a bustling university town is amazing! I just have to keep reminding myself to keep my eyes open!! Pursuing art (even as just a hobby) has certainly helped me be more mindful of the beauty that is all around me – bringing me a step close each time to my personal spring of joy!

Love,

Fibronacci