Wellness Wednesday: Why Sick Bloggers Blog About Being Sick

The topic of this post may seem like a no-brainer, but it's something I still feel like I should probably explain.

Bloggers blog about their life--things going on, things that interest them, things that are important to them, things about them, happenings, news, etc. And if they're extra brave, they don't just blog about the happy things, which we all know tends to imply that life is nothing but smooth sailing.

All of the above also applies to bloggers like me who live with a chronic illness. It would be silly (in my opinion) to not talk about my health problems and what it's like living with them. It would paint a totally inaccurate picture of me and my life. And it would also be a missed opportunity to spread awareness of my kinds of illnesses and what it's like living with a chronic illness in general.

To someone who is ill, no abundance of description can be accurate and vivid enough to get across what such an existence is like. But to those who are not, it is so abnormal and out of their comfort zone to read what people like me live with every day that attempts at descriptions can seem exaggerated. It can also seem like we're either doing nothing but complaining or are totally self-centered and depressed people. But the reality is that we are simply trying to get across our very complex, unavoidable reality in words that those who cannot understand it experientially can at least begin to understand in theory.

This blog is a chance to speak up about chronic illness and raise awareness. What good would it do for me to just keep to myself what all's going on with my health problems? Then no one who's suffering as I am can see that they're not alone, no one can benefit from any tips and discoveries I pass along, and no one who's well can become aware that there are tons of people out there not functioning day in and day out like they are. That their health and ability to function is to be treasured every day and is as unimaginable a condition as our sickness is to them. And such awareness brings understanding, if not experiential, and also validation to those of us who feel so abnormal and misunderstood.

I don't expect a lot to come of such posts of mine, as I'm sure most other chronically ill bloggers don't. (And there are a lot of us.) We just want you to know. To be informed.

So when people like me post about our treatments, our difficulties, our day-to-day experiences, or just seem to mention health issues in any post regardless of topic, we're not doing it to get attention or because we're just so horribly engrossed in ourselves--it's because that is our life, whether we like it (ha) or not. And we don't expect you to understand it. We would just love for you to be willing to try.

It's Not All I Am, But It's Still Me

I've talked a lot about Fibromyalgia, etc., this week. And the overabundance of it all may make it seem like all my life is about is health problems. While that's partly true, there is still a whole lot more to me than battling a few dozen dysfunctions, going to the doctor every week, and constantly trying to remember to take the right supplements at the right time.

~ I make jewelry and run my happy Etsy shop, Katya Valera.
~ I am becoming a more and more active member of the blogging world and learning more about it than I ever dreamed existed.
~ I'm pretty addicted to shows like Nashville, Friends, the Bachelorette, and The Voice.
~ I'm also pretty addicted to Instagram.
~ I adore Louisa May Alcott and Lucy Maud Montgomery. Yes, more than Jane Austen...
~ I love writing of all kinds.
~ I love "my kind of" fashion, like hi-lo dresses, maxi skirts, lace, wedges, jewelry, and just about anything coral or gold.
~ I love summer and having the windows open and wearing flip flops and tank tops and being at the beach.
~ I love to laugh and do lots of that thanks to my husband's priceless comedic side.
~ I love rain (as long as I'm not driving in it) and hate snow (which is unfortunate since I live in Four Seasons Country).
~ My favorite foods are pizza, cheese, and chicken, even though I can't eat the first two at this point in time.
~ I dream of owning a yorkie, who has been named for years now. (I miss her and we haven't even met yet.)
~ I only buy clothes and shoes and such if they are under $20. Under $10 is even better.
~ I think if you're going to buy jewelry it might as well be either handmade or vintage. Or dirt cheap on sale if it's from a retail store. ;)
~ And if you're gonna buy something you can buy handmade, you might as well go with that option.
~ I think the mountains of my home state are the most beautiful place in the world. They're in my blood.
~ I'm madly in love with my husband of two years and am both anxious and eager for the new things and places the future holds for us.

My health problems are a very big part of me. But they are not all that I am. There is a balance of what to share and what not to share, as I tried to put into words in this post a while back, and I am compelled to share what I can to both help others and simply be me here on my little blog.

Contrary to how less than human chronic illnesses are wont to make one feel, I am still a twenty-something newlywed who loves chocolate, watching The Voice, and meeting one amazing new friend after another here in Blogland. So just in case, please don't let the former keep you away from getting to know the latter. :) And shoutout to lovely people like Mary, Hayley, Joanna, and Lauren who have already made me feel very welcome to this new world. <3

P.S. Linking up with Thinking Out Loud.

My New Every Day: How I Am Now

Last week, on Thursday, May 8, to be exact, I posted about it being exactly 4 years since I graduated college. That is just crazy, you guys--the time span of a whole college education has passed since mine.

I remember pretty well the feeling of being finally done with college. I moved back home with my parents, and set out to find a job asap. I fairly quickly made connections with a publishing house and began editing for them. At that point, the only problems I had in life were being long-distance from my brand new boyfriend and the rather insane projects I was handed and expected to make perfect. (Like I've said, "Behind every great book..." ;)

I mentioned on Monday that a few months into that job my health started going south, really out of nowhere it seemed, and by January of 2011 I was diagnosed with fibromyalgia. Despite new drugs over the two and a half years that followed, I really just got worse. And knowing that I would never get better, never be normal and healthy and free of worries like pretty much everyone around me seemed to be only put a darker weight on the daily multitude of symptoms that became my norm. I had to stop my freelance editing because of my lack of ability to concentrate and think as clearly as I once could. I did start making jewelry the fall of 2011 just for kicks, and the flexibility of such an endeavor gave me the freedom to do something with myself in those moments when I could, and have a happy escape. Otherwise, I literally would do nothing.

By the fall of 2013, this was just some of my sad every day:

1) Daily pain of every kind: stabbing pain that will take your breath away, tight and sore limbs, that indescribable, sensitive, don't-touch-it-pleeeease pain, all at any given time anywhere on my body.
2) Headaches and eye pain, which always encompassed my whole face and teeth and left me in tears.
3) Light and sound sensitivites that rendered any trip to a restaurant such an ordeal I was afraid the sensory overload might actually bring on a panic attack.
4) Depression--not quite as bad as it was back in 2011, but still not normal.
5) Stomach pain after every meal and such horrendous IBS and digestion issues that I would nearly pass out from the intense pain every so often caused by my very sluggish system. That is the absolute worst symptom I've dealt with--you literally want to die while it's happening since the pain is so bad. Bad is not a deep enough word. Let's just say if having a baby feels like that, we may be rethinking ever doing that...
6) Fibro fog--daily, with little breaks in the clouds for a couple of minutes every couple months--so obvious to the point that my husband could see it on my face when I was "awake" suddenly.
7) Hair loss and terrible hair health--my cosmetologist sister-in-law saw my hair for the first time in about a year and confirmed what I had noticed: it was in terrible shape. Basically it was as sick as I was, and I do very little to it and never color it. I also developed terribly itchy bumps on my scalp that would drive me insane, diagnosed by a "dermatologist" (I don't wish to talk about that appointment) as seborrheic folliculitis. Whatever.
8) Completely reversed sleep cycle, meaning I go to bed anywhere from 4 am to 10 am and get up approximately 12 hours later. I literally would not get sleepy enough to go to bed, no matter how tired I was, and if I would lay down to try, my thoughts would have 12 windows open at once and just rotate between all the different things I needed and wanted and forgot to do. I even tried staying up for 24 hours to "reset my clock" more than once. Useless.
9) Energy? Nonexistent. I was just always a various level of exhausted. Taking a shower was my accomplishment (an every other day accomplishment at that), as was taking pictures of my jewelry to list on Etsy. Making dinner and cleaning were out of the question.
10) I was unable to ever get over a cold or similar sickness without the help of antibiotics and steroids, ever since about 2009.

I shared yesterday the amazing treatment that I found last fall, so I want to contrast the above with how I am now. Please keep in mind the multitude of problems I was found to have and the incredible sensitivities we've had to deal with and work around in my treatment, so I am not as far along yet as most people are by the six month mark of treatment, but I am gradually getting there.

Literally the weekend after my first treatments, I was feeling better than I had in a long time--I'm not saying all better by any stretch, but just slightly improved. While it's not out of the realm of possibility for brand new treatments to actually make you feel a tiny bit better after the first visit, I honestly think it was that the unbearable weight of knowing I had no hope had been removed and replaced by a hope I never knew was possible. Like I had a second chance at life again. That first weekend, I actually, helplessly, began dreaming again. Thoughts of what I wanted to do with improved health welled up in me, and it felt like I would be able to do anything. Can you imagine the feeling?

So here's a brief summary of where I am now (please note that my improvements have been very, very gradual, so this is how I am now and not by month two or month four):

1) My hourly pain is now down to a few times a day at most, and not nearly as widespread and severe as it was. Yes, I still have pain, but much, much less often than I did.
2) My headaches are incredibly improved. I've maybe had four or less of the headaches I described above since treatment, and have much fewer less severe ones than I used to too.
3) I am still sensitive to lights and sound, but not as much as I was.
4) I'm not nearly as depressed as I once was, maybe not even at all--and a lot of that could be the fact of knowing I am being helped and there is hope for me.
5) I do still deal with stomach issues, but my stomach does not hurt after every meal, and my IBS is greatly improved. It is still most definitely a work in progress.
6) I do still have fibro fog, but I feel slightly more awake than I used to, and the clouds aren't as thick. I can't wait until they've disappeared.
7) The hair loss did stop once I began treatment, and I got my hair cut recently and the cosmetologist, without knowing anything about me, proceeded to tell the girl near us, "Look at her hair!" and pointed out how healthy it was. Well, that made my day. I hadn't even begun hair and nail supplements yet. And my scalp problem is not all gone but improving, and I can actually make it without my prescription shampoo.
8) My sleep continues to be one of my biggest issues (I'm writing this at 3:15 am), but I do get sleepy at these hours that I would normally be wired during--and that alone is a huge step in the right direction and means my cortisol levels are beginning to listen to us.
9) I still don't get what this "energy" is that people talk about, but I find myself actually doing things nowadays. Like making my own meals a lot of the time. That alone is a big indicator--if I make my own dinner, I'm doing better than I was.
10) I got over a cold without prescriptions this past winter for the first time in years. It came back some a couple weeks later, and I still kicked it.
 
Six months ago, all I could do was make jewelry and attempt to run a very small business from my bed really. Getting a job outside of the home was out of the question, and every day was misery.

Now, I've added a full-time blog (hey, you bloggers know it's true) to my days, which includes taking pictures outside, something I'd never do, might be about to launch yet another business (whoops--sneak peak, guys!), am actually considering a "real job" (though part-time--I ain't Superwoman! :P), and continue to discover new things I want to do--and am actually attempting to do--that my creativity can't help dragging me into.

No, I'm not all better, and I'll never really be all better, but if my health was level 10 awful when I began treatment, we're at least down to a 6.82. The goal is 1, but able to dream and do some things is a whole heck of a lot better than my. life. is. over.

I'll keep you all updated on my health journey (that's part of the reason I'm here!), because this is definitely not over. This is not at all where I thought I'd be at this point of my life this time four years ago, but I am not where I thought I'd be at this point just over six months ago either. Life is hard, health problems suck, but there is hope. And I'm thankful for it every day.

Hope in the Nightmare: "Fibromyalgia" Is Just a Label

As you may know by now, Monday was Fibromyalgia Awareness Day, so I am taking the opportunity to devote this week to some long overdue posts on my health issues and related items that I am dying to share, particularly with those of you who are also sick.

On Monday I caught you all up on my story from the beginning of my health problems in 2010 up until this past fall. That is where the plot twist entered that I want to share with you all. With this special week, I don't only want to help spread awareness for the realness of the suffering that those of us diagnosed with Fibromyalgia go through--I want to also do everything I can to spread knowledge of how I have been helped and how those of you who are sick and living in absolute misery can be too.

When you have a chronic illness, it's understood that healthy people really aren't quite sure how to respond to you. They want to help but don't know how, so we're often on the receiving end of all kinds of unsolicited (and often very misinformed) advice. 98% of the time, the suggestions we hear from well-meaning friends and relatives are things we've heard over and over again and either things that we have already tried, things that we are currently doing, or things that are just plain crazy/not applicable to our problems at all. (Sorry... it's true. Spoonies give me an Amen here...)

But the hope that fell into my lap last fall actually came through the hands of a family friend: a DVD a friend gave her about Fibromyalgia. That was all I could tell from the picture on it, and I let it sit for a good couple of weeks or more before finally watching it. I was, honestly, expecting more doctor crap about Fibromyalgia and just a basic education of it, medications to take, blah blah blah. It was, however, a presentation by a semi-local chiropractic physician who specializes in helping people with chronic illnesses through the use of functional medicine.

This DVD entered my life at a time when I had reached my worst health yet, and it seemed that would just continue to progress. As I mentioned on Monday, I'd tried the usual medications and none of them helped enough to stay on them. I was miserable and feeling quite useless, and each day was a horrible struggle of its own. My husband and I had been hoping to find a specialist once we moved closer to a big city, whenever the job search cooperated long enough for that to happen, so to find someone who might possibly have a clue how to really help me only 45 minutes from where we live was totally unexpected.

Open to any help possible but still very skeptical about this doctor's credibility, I made an appointment, filled out about 13 pages (no joke) of details about all of my problems (there still wasn't a place to account for all of them), and went to my first appointment in October of 2013. As it turns out, this (young-er) doctor was diagnosed with MS a few years ago and became so sick that he was in the hospital and unable to do anything. He found a doctor like he is now in Texas who helped him so tremendously that you would never know he had any trouble getting around and thriving now. As he puts it, he has one or two bad days a month, so he is not cured, but he has maximized his body's full potential. (And based on his schedule everyday, his full potential is pretty crazy.) So he came back to his home state to help others like he was helped.

At my first appointment, he tested how my brain controlled my body by seeing how I handled standing with my eyes closed (I weave back and forth, which I didn't know), how my eyes handle being closed (my eyelids twitch uncontrollably, which I did know), if I could touch my nose with my pinky while standing with my eyes closed (I'm very bad at it), if I could touch where he first touched my arms with a pen while my eyes were closed (failed miserably), among lots of other such exercises, which I often failed. Based on all those tests, some very in-depth (not your average) blood tests, and the very specific, in-depth paperwork I filled out, he was to get to the bottom of my body's problems and report back at my next visit.

By this point, my confidence in his credibility was improving. We came in the next time to a white board displaying an outline of my problems and handouts of all of his findings and proposed treatment. This is no come-in, get-something-prescribed, get-out doctor. He focuses on finding the root cause of your problems and treating each of them individually, no matter how many there are. And all of this is done not with the goal of curing you but, as he put it, to make your number of bad days trade places with your good days. If I could have 28 good days a month, I'd gladly take it.

Here is (some of) what we found is wrong with me:

Structural problems: Vertebrae issues, muscle spasms, pain, loss of range of motion, and "pinched" spinal nerves.

Neurological problems: Including issues with my cerebellum, issues with the communication between each hemisphere of my brain, blood sugar imbalance, serotonin imbalance, and dopamine imbalance.

Metabolic problems: Including dysfunctions of the colon, stomach, small intestine, and liver/gallbladder, along with blood sugar issues and thyroid issues.

Basically (and in addition to the big words used above), I have an autoimmune disorder, am pre-diabetic, pre-Hashimotos, and pre-anemic. The sides of my brain aren't communicating like they should. I have adrenal fatigue, my body's ph is acidic, my spine is misaligned (one leg had become longer than the other), and my oxygen levels were very, very low, as in, a few more points down and I would have been in cardiac arrest. A thorough allergy test showed that I am not really allergic to all the foods I thought I was, such as potatoes, apples, and peaches, but rather my gut is so damaged that it was sensitive to everything and my body would react like I was allergic. (I basically was experiencing stomach pain every time I ate, even though I had removed gluten from my diet for the past two years--the damage it had caused had not been healed.) And another test found that my cortisol levels are the complete opposite of that of a healthy person, resulting in my reversed sleep cycle (basically living on night shift).

There were so many separate things wrong with me that I can't even remember them all, and I left the appointment saying that it's a wonder I ever got anything done. Basically, I'm a lot sicker than anyone realized.

The suggested treatment was to come in 3 days a week for the first few months, then down to 2 times a week for the rest of 6 months. My treatment includes: spinal adjustments, oxygen therapy, acupuncture (my body is so out of whack, it literally couldn't handle it, so he had to switch to laser therapy instead), the Repairvite Diet to repair my gut and the Clearvite Diet to detox my system (both of which you've probably seen me refer to on here, as most of the recipes I share follow those), and numerous supplements to help things like my stomach acid and cortisol levels (not all at once of course) including but not limited to Vitamin D, Gastroven, Digestase, Quinol, Max B, Green Tea Extract, Glutathione, Adrenacalm, Adaptocrine, Premier Greens, and Dermavin.

Typically most people are on the Repairvite Diet for a couple of months. I was on it for five because we kept encountering so many new issues, like unexplainable, new stomach pain that finally went away and a suspected allergic reaction to one of the supplements that put me in the ER for about the fourth time in less than six months. As time went on, we've discovered it probably wasn't an allergic reaction but rather just my body reacting to a full dose of a new supplement it wasn't used to--I am that sensitive. So when I'm to take one teaspoon of something a day, I have to start out with 1/8 of a teaspoon for a few days, then a little more, then a little more, until I very gradually reach the full amount, just to let my body adjust to it. This has caused my treatments to be dragged out like crazy and basically brought me at six months where most patients would be by 2 or 3.

By a couple of months into my treatment, once my body had thrown us a few unexplainable curve balls, including Chapman's Reflexes and later Herxheimer's Reaction in response to the detox, my doctor finally admitted, just honestly not rudely by any means, that I was the most difficult case he'd treated yet in his nine years. New issues I would encounter were things that he would discuss with colleagues and find they'd never seen such things before either, like my reactions to supplements. It was kind of a relief to hear that, since I had wondered. He has helped so many patients who weren't even functioning, in such a shorter time frame than I was taking, so it was discouraging why my progress was so terribly slow. It comes down to the fact that my body is just incredibly sensitive to everything. So I'm definitely a challenge for him, but neither of us are close to giving up yet.

We very recently discovered through another blood test that I have the MTHFR gene mutation, which inhibits my body's ability to metabolize folate, which is essential for your body to function properly. If you've never heard of this, even if you're familiar with chiropractic treatment, it's because this issue is something only recently coming to light in the health world, and we're hoping it's a big piece to the puzzle in my journey to better health. You can learn more about it here.

I've now been doing treatment for more than six months and am still going, since the work's not done yet. I did honestly expect to be much more improved by now than I am, but you never know how your body might respond, and mine is extra stubborn. Yet I honestly am improved, which I'll talk more in depth about tomorrow.

So where does this leave my diagnosis of Fibromyalgia, if it turns out I have 62 nameable, describable, treatable problems? I have come to truly believe, as does my doctor, that "Fibromyalgia" is just a label that doctors give to people with more problems than they can or want to attempt to help. Your average doctor doesn't want to see the same patient three times a week for six months, work with them, analyze every single part of their body system, determine exactly what dysfunctions are occurring, and treat them all individually, patiently, and thoroughly, no matter how long it takes, without a single prescription. The average doctor wants to prescribe you something to make you "feel better"--just enough to get you through--and send you on your way.

So when I say I have Fibromyalgia now, it's just easier than explaining all of the above. I have "Fibromyalgia," but to me that means that I have a few dozen treatable problems all ganging up on me that we have now identified and can truly begin to combat.

No, I am not saying that everyone who has been diagnosed with Fibromyalgia or CFS has the same 72 problems I was found to have. But I am saying that I firmly believe everyone who has been diagnosed with Fibromyalgia and CFS has their own unique combination of structural and/or neurological and/or metabolic problems that are all teaming up to absolutely ruin their health. The term "Fibromyalgia" is a cop-out.

When I found out all these things that are really wrong with me, that they are treatable, and that I could very likely gain at least some quality of life back, I wanted to shout it from the rooftops, aka on every social media platform I can. But as I mentioned at the beginning of this post, we chronic illness sufferers hear so many suggestions and guarantees at help or a quick fix that I really don't know that anyone would listen to me. We're jaded from all the crap thrown out at us. But I must share this hope that I have found.

This is not a quick fix by any means. As my doctor says, it's a marathon, not a sprint. And that's pretty clear considering we're still working on me more than six months into treatment. It's time-consuming, as we have to drive about an hour and a half round-trip to get there, at first three times a week, then two, and lately we're down to one based on different factors. It's not cheap, as insurance doesn't like to cover things like chiropractors and supplements that can actually help root causes--they only want to pay for prescriptions. It's a major commitment. But when you are completely miserable and think you have absolutely no hope of help and that you will be just as miserable as you are today, every day for the rest of your life, and then you find out there actually is real hope and real treatment out there, every penny and every mile is worth it.

I know that every body is different. But I would not share this experience of mine if I didn't truly believe that every single one of you with a chronic illness would be helped even a little if not immensely by the same kind of treatment I am now undergoing. Even if you haven't been diagnosed with Fibromyalgia or CFS but deal with other problems like back pain or migraines, I beg you to find a chiropractor like mine who truly knows what he's doing--you will find such relief.

You can use this handy link I found to locate a chiropractic physician like mine near you. No, I'm not getting compensated in any way to share this info--this is my story that I wish I could share with everyone dealing with a chronic illness because it's not common knowledge and not the norm for treatment--yet--and I feel like I've discovered a gold mine that I must share with all of you. I truly hope you'll look into it and give yourself a chance to be treated by someone who can actually help you. And as rare as my unexpected difficulties have been in treatment, there's a good chance that you can be helped even more than I have so far or even more swiftly than my body has been.

I know this post is the longest in the history of the world, but it still doesn't even include why the problems I have are problems, and even more issues I'm dealing with and treating. I hope to share some of those in future posts, and I'll be back tomorrow with how I am doing since my treatment began, but for now I will leave it at this: If you've been diagnosed with Fibromyalgia, Chronic Fatigue Syndrome, or any related chronic problems, from headaches to thyroid issues, please seek out a doctor like I've described. There really is hope for you!

(If there's anything you have questions about or want more info on, please feel free to comment or contact me!)

P.S. Linking up with Be.You.Tiful Link Party, Wake Up Wednesday, Lovely Thursdays, Fab Favorites, and Link Love.

Tuesday's Two Cents: Just Like the Wind

You can't see the wind, but you believe it's there, right?

If someone says they have cancer, but you can't see it, you still believe them, right?

Then why not believe people who say they are in excruciating pain or that they are so dead exhausted they can't even lift their arm to put on chapstick (been there on both counts)?

Please remember that just because you can't see what's on the inside, and just because you can't feel what we're feeling, that doesn't mean our bodies aren't very, very sick. The suffering and misery that we who have been diagnosed with fibromyalgia claim we live with is in fact real--just as real as the wind.

~~~

  

Today's the last day to enter to win a $25 shop credit to Katya Valera over at Mal Smiles!

Fibromyalgia Awareness Week: My Story

It's another special week here on my blog, as today is Fibromyalgia Awareness Day. I've referred to my health problems in the past and very briefly listed them in my about page, but I wanted to take this opportunity to spend the week sharing my story, both to help you all get to know me and my life better and also to help educate those of you who aren't familiar with fibromyalgia and other chronic invisible illnesses.

If you suffer with fibromyalgia (that seems such an understatement to put it that way), please take these posts as encouragement that you're not alone--and do keep reading the rest of the week for some help I want to offer. And if you don't have this or other such illnesses, please take this opportunity to learn a little more about what we deal with--understanding is one of the things we crave the most.

The first time I realized there was a serious problem with my health was the fall of 2010, just a few months after graduating college. Within a month or two after I graduated, I began having severe headaches and eye pain to the point I just knew there was something seriously wrong with my brain or my eyes. But an eye appointment and a brain MRI of torture showed no problems.

I also realized that when a dog would jump up on me, it would hurt like crazy for minutes after, my arms would just feel very strange all the time, particularly being very achy and tight in the mornings, and I would randomly just not feel right, for lack of words to describe it. I was also depressed. Those were the paramount problems at the time.

By the end of 2010, fibromyalgia was mentioned to me in passing, and I looked it up online and realized I matched the symptoms exactly. I was certain that's what I had, and a doctor and a rheumatologist both soon confirmed it for me. Fibromyalgia is referred to as an incurable syndrome, with no established cause, and the only test for it is seeing if you have a certain number of tender points all over your body--basically the doctor pushes on you and you hurt in a lot of places you shouldn't. I know I also have Chronic Fatigue Syndrome to go along with that, I just didn't bother getting an official diagnosis for it. It's a similarly incurable, incapacitating, not well understood chronic illness.

With the fibromyalgia diagnosis came the typical treatments of pain medication and an antidepressant, later a muscle relaxer and another antidepressant, and others I can't even remember. None really helped, some made me gain weight, some made me lose weight, and it was really all just a very sad game to try to find something that made me feel a little bit better.

Through having a diagnosis and learning more about fibro, I was able to realize in retrospect that I had been dealing with mild fibromyalgia since I was about 12 years old, because of random indescribable kinds of sensitivities and pain I would experience that I thought were either somehow normal or just quirks, digestive problems, and sleep problems. The symptoms worsened some by the time I was in college, and my depression really progressed over those four years. All of those symptoms--and much more--for some reason really exploded after college, possibly brought on by the stress of those four years or simply by the fact that if you're sick and aren't treated, of course you'll become worse as time goes on.

At this point I was dealing with the daily symptoms of full-blown fibromyalgia: incapacitating headaches, depression, exhaustion, Irritable Bowel Syndrome, food allergies, nausea, sensitivity to light and sound, brain fog (what we call fibro fog), memory problems, stiffness and aching, random hard-to-describe pain from tingly to take-your-breath-away-stabbing pain, sensitivity to touch and pressure, poor sleep, and a reversed sleep cycle (exactly what it sounds like), just to name a few. Not to mention hair loss, chest pain, night sweats, weakness, shakiness, dizziness, and sensitivities to temperature, especially the cold. (There really are too many to list. Here's a more comprehensive list for you.) Basically every system in the body is in overdrive and every reaction and sensation is heightened incredibly.

All of those symptoms as just words on a screen seem so insignificant. But put them into your everyday life and your whole world is turned upside down: Poke me on the arm, and I could cry, whereas a healthy person wouldn’t even flinch. That’s the nervous system in overdrive. Put me in Walmart or a restaurant, with people rushing around me and talking, ads playing, music going, air blowing past me as I walk, smells everywhere, and I will be absolutely exhausted from the sensory overload, not to mention from the act of walking around. Headaches that bring you to tears out of sheer pain and helplessness, exhaustion to the point of being in bed all the time, with taking a shower being a major accomplishment, the inability for your system to empty itself properly and without pain that literally makes you pass out, a fogginess that makes life seem like nothing but a blurry, bad dream, even on wonderful occasions like your own wedding.

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As you may know, I began dating my now husband around the time of my diagnosis, and we got married in May of 2012. (You can read more about our story here and here.) In the year and a half following that, I ended up in the ER three or four times, one with my first panic attack. That really shocked my system and brought about even more problems. I was gradually getting worse as time went on.

In those first few years of knowing I had fibromyalgia, I knew there was no cure and I would always be this way. Honestly, as is sadly normal with chronic illness sufferers, I felt completely worthless as a human being. I couldn't even function on a daily basis, like cleaning the house or fixing dinner every night or even getting out of bed and taking a shower every day. Holding a job was out of the question, and I had to stop my freelance editing because of the fibro fog and lack of ability to concentrate. I had gone to college for four years, gotten a degree, and was doing absolutely nothing of value. Simply surviving each day was my only accomplishment. I was so miserable, I really didn't even want to live anymore, and really only Jesus got me through those years. You just can't imagine the misery until you've experienced it yourself.

Now, living with this illness is hard enough, to put it lightly, but the kicker is that with this illness, and others like it, we don't really look sick at all. And sometimes we kind of like that because we can almost pretend that we're okay as a very brief means of escape when we're out or at a special activity. But this disguise understandably leads onlookers to assume we're totally fine and just lying about how we feel or exaggerating. But I promise you--there is far more going on in our bodies than you can see, and every single symptom we mention is just as real and just as bad as we say it is. A smile on our face does not necessarily mean we are feeling okay but often is our attempt to hide the truth.

I hope this brief (long as it is on screen) account of my first years living with fibromyalgia has given you a clearer glimpse into what those of us suffering with it deal with every day. I do have a plot twist coming to you on Wednesday though, and I'm eager to really offer some hope to those of you living with this illness that I've been waiting to share for a while now.

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Be sure to read Part II here!

P.S. Linking up with Funday Monday, Monday Morning Gossip, Manic Monday here and here,