Monday, June 4, 2012


I will be back to blogging very, very soon. Until then, I saw that the Fibromyalgia Network posted this quote on their Facebook page, and I thought I'd share it.

"In spite of all the other challenges, our own feelings about our illness are at the center of all other issues we are facing. How we address those most difficult emotions will determine whether we reclaim ourselves, and live our lives successfully, or sacrifice our very souls to the illness." Linda Noble Topf, M.A., a person with lupus and fibro, taking about “You Are Not Your Illness.”

I have Fibromyalgia. Fibromyalgia does not have me. Does it have you?

Sunday, May 13, 2012

Family and Fibro.

So I was going to take today to post about my graduation and Fibromyalgia Awareness Day, but a more pressing issue has come to light.

I hear a lot of stories from individuals with fibromyalgia whose family simply does not believe the pain the are in and view them as "lazy" or "dramatic" or that it's "all in their heads" - something to that extent.

And while I sympathize with them greatly, I'm still left with the question: What if you have an extremely supportive family that still somehow doesn't "get it"?

I'm fortunate to have such a loving and caring family as I do. We are a close little clan, and nothing they do for me goes unnoticed or unappreciated. But sometimes, despite all of the doctors visits and pharmacy trips, it seems as though they forget I have fibromyalgia.

Last night after graduation, my dad immediately had a discussion with me about my future. He also started suggesting I begin to get into all sorts of activities now that I'm done with school. Then he began asking me about my plans, as everyone else has been doing lately.

Up until 6 months ago, I had plans. I was a bartender making a good sum of money that went straight to my savings, which is now completely gone due to medical expenses. Bartending may not seem like that great of a job, but I was damn good at it. In fact, I was a natural. I caught on quick, could memorize a drink easily, and I was extremely accurate, quick on my feet, friendly to customers, and could whip up several drinks at a time just as fast, if not faster, than some of the seasoned bartenders I worked with. And I maintained all of these skills even in the most stressful and busy of nights. I chalk up this ability to my three years of having worked at Sonic Drive-In, where I was the master of fountain drinks.

Regardless, I loved my job. I loved it, I was good at it, and it payed well. I'd already been told I had arthritis, and many nights I could really feel it in my wrists, hands, and hips. I knew I wouldn't be able to bartend for 10+ years like many of my coworkers had, so I decided I would do it while I still could. In the past few years, I've made a name for myself as a bartender. And after graduation, I planned on bartending for maybe 5 years or so before going on to graduate school.

I also planned on running marathons, as I was an avid runner. But the first 12 mile marathon I signed up for which was to take place in November 2011, and which I'd been training for for over six months, I had to drop out a mere three days before. I was falling ill and growing sicker by the day. All of my hard work of running 5-6 days a week all summer in the hot, hot, humid  south Texas heat never came to fruition. I was devastated, but thought "Well, there's always next year and there's always more marathons."

What I didn't realize is that this wouldn't be a normal flu virus that simply needed to run its course.

But running and bartending weren't my only plans. I was also a weight lifter, a dancer, a gamer, a reader, a writer, a musician, an activist, and a volunteer, who was set on learning different languages and fighting styles from classes offered within my community. I had big plans for my post-graduation life, and I was thoroughly excited about them.

But then fibromyalgia happened. And I came to find that I had to give up many of these passions and aspirations. I don't even know if I could handle graduate school in time in the near or distant future.

So what are my plans? I don't know. I'd like to say my plans are simply postponed, but I don't see how I could ever live the hectic and active lifestyle I once had a mere six months ago. I've been a work-a-holic since I was sixteen, and I've never been happy at a job where I'm not constantly on my feet, busy, and moving and working long shifts. Shortly after having my first job, I soon had two simply because of a want rather than a need. I'd work the morning and day shift at Sonic and then go straight to Subway at night as an assistant manager on the weekend, and during the week I'd go to school, basketball practice, and switch up which job I went to at night. Might seem like hell to most, but I had a deep sense of pride in that sort of work.

Now I can barely handle sitting in two hour long classes four days a week without going straight to bed after.

So I don't know what I'm going to do now. I have no idea. But my parents don't seem to understand this.

They also don't understand why I'm uncomfortable with making plans for the immediate future. When I say I'm uncertain about whether or not I'll for sure be able to go somewhere on the weekend, they respond with a stern "Well why don't you know? Are you going to be there or not? It's a simple question." But it's not a simple question, not for a fibromyalgia patient. In fact, it's a very complicated question.

Yesterday I asked my parents several times about what we would be doing for Mother's Day. I asked in advance so that I would be able to schedule the proper time for rest, readying, and recovery. But they kept telling me "I don't know." Then this morning my mom decides she wants to go walk down main street to go antique shopping. That's difficult enough for me, but then they want me to be ready in less than an hour.

When I tell them it'll take me more than an hour, they scorn me for it. They act as though I'm being ungrateful and that I'm being selfish because I won't do what my mom wants to do on Mother's Day.

I've spent an ample amount of time trying to explain to them why I can't do certain things. I've explained that in the process of getting ready, I frequently have to take breaks. Hell, my dad and I share a bathroom together, he sees my shower chair every day. I've tried explaining that while some days my pain or exhaustion may be a four or five one day doesn't mean that my next day will be the same. On the contrary, my next day could even be up to a seven or eight or even possibly a nine. I don't know. I can't know. I won't know until I wake up in the morning. I can promise that no matter how I feel I'll try to push through it to the best of my ability, but I simply can't promise that I'll be successful in pushing through it with certainty.

I asked them yesterday what we would be doing and what time so that I could properly prepare for it and give myself enough time to be ready when needed. They had no answer for me. And now they don't understand why I can't get ready as quickly as they want me to.

And frankly, I don't feel like explaining this to them again. It stresses me out, it aggravates me, it makes me feel very badly about myself and it makes me feel guilty. And I don't understand why I have to keep explaining these things to them. I don't understand why they understand some things about Fibromyalgia but are completely clueless about others.

I graduated and moved half of my stuff out of my apartment yesterday.  I was up on my feet way more than normal, I was moving more than normal, and I was active way more than normal. Because of Mother's Day, I don't really have time to recover as I would usually need. My pain is about an eight today and despite that I'm willing to go through hell walking down main street, even with my cane, which I hate taking in public.

But this isn't enough for them. Instead I receive a bunch of condescending huffs and puffs and passive aggressive responses. Because I'm the lazy one. I'm the selfish one. I'm the inconsiderate one.

And with all they do for me, I feel immense guilt not only being unable to do what they want, but also for criticizing them for not understanding.

I don't know what to do. I'm at my wits end with this. I don't know why sometimes they understand and other times they don't. Do they forget I'm sick every single day? Do they confuse being happy with being healthy? Do they somewhere deep inside think I'm exaggerating my pain? Is it because I make efforts not to cry in front of them when I'm miserable somehow mislead them to think I'm fine? Is simply explaining it to them not enough?

I don't know and I don't know how to fix this. I don't want their sympathy, just their understanding. I don't want to be treated like I'm sick all of the time, but I also want them to respect my limitations. And  I definitely don't want this issue to be such a frequent occurrence as it is.

Thursday, May 10, 2012

Purple Ribbon.

October 2nd, 2010 was just a normal day as any.

I woke up, ate, showered, and checked Facebook, where I responded to a message from my best friend, Kayla. A bit after 3 p.m. I headed to work for a 10 hour shift. After work, I headed up to the roof with one of my employees who had closed with me. We only went up because we wanted to check it out, but we ended up staying there and talking until my boss showed up to open shop in the morning around 8 a.m.

We quickly ran down and parted ways before he could catch us. I wasn't usually up and about at this time of day, so I took advantage of it and grabbed some breakfast at Whataburger.

And then I went home. I went home, checked my Facebook, and intended to sleep until my next 10 hour shift that night. It was supposed to be a normal day.

After logging into Facebook, I responded to another message from Kayla she'd sent some time before I went to work the previous day. I then closed my laptop, ready to curl into bed and sleep. But seconds after closing my laptop I hear the chat noise go off.

I've had this happen many times before and I never open it back up to check who it is. But for some reason, on this day, despite working a long shift and having - literally - no sleep, I decided to check to see who it was.

It was my other best friend Sarah.

"Do you know what's going on with Kay (Kayla)? Has anyone contacted you?"

I asked her what she meant by this, and from the limited information we could gather, Kayla was in the hospital and unconscious. This is all we knew. We called her family and anyone that might know anything until finally the fourth member of our little group, Holly, answered. Holly was already at the hospital several hours away from us and the only additional information she had for us was that Kayla had fallen off of an ATV late the night before. At this point, it didn't seem like anything too serious to us.

Still, Sarah and I immediately wanted to go to the hospital, but I had work. So we decided that even though it'd be past midnight by the time I got off work, we would go then. After deciding this, I went to sleep.

A few hours later, I woke up to both of my parents sitting at my bed side - an extremely unusual, if not entirely singular occurrence. In a soft tone, my mom told me that Kayla was not going to make it. She then preceded to tell me that Sarah was in our living room and to get dressed and that she would drive us to the hospital.

Apparently Holly had called Sarah and I earlier, but I had my phone on silent so I missed it. Sarah, on the other hand, did not and came to answer a phone call from a devastated Holly who told her that they didn't think Kayla was going to make it. Sarah, shocked and not knowing what to do, called my mom and relayed the information she'd just received from Holly. Sarah then told her that she didn't know how to tell me, as she knew that Kayla and I had a particularly close bond, especially at that time.

My mom told her that she would go pick Sarah up at her house, which was about 40 minutes away from us. So my parents picked her up and brought her back to the house, all while I was sleeping, and that's when they told me.

We then made the 3 hour trip to the hospital, and there we would stay for the next 12 hours. No one but family was allowed to see Kayla at this point. Hope that she would pull through began floating around when she started moving her arms and legs a bit. So everyone hoped, and many believed, she might make it.

Being the realist that I am, I looked up information about head injuries and body movements only to find ample information that these movements are hardly indicative of consciousness and brain activity, but instead just involuntary movements and spinal reflexes of the body. This reality hit me hard, and it was difficult to see those holding so strongly to the hope her movements gave them, especially her sister. It made me sad to know they were holding on to so much false hope.

In the morning, Sarah and I decided to get up early and go back to the hospital from our hotel. When we arrived, we were the only ones there, and the nurses allowed us to go in and see Kayla.

I saw my best friend hooked up to tubes that I was all too familiar with. We sat with her and held her hand and talked to her and made jokes to her. We told her that if she made it through we would have our next girl's night in Paris or where ever in the world she wanted to go. Right after saying this, her hand squeezed both of ours. I suddenly understood why others who had experienced her movements were so convinced.

Before she'd squeezed our hands, she simply looked and felt lifeless and heavy and still. Her strong squeeze hit me like a train in reminding me that she was still alive. And it hurt. And it was hard to tell myself that it wasn't voluntary, especially since it occurred at such an appropriate time. She made a few other movements while we talked to her and we left once her parents showed up.

Kayla was taken off life support a couple of hours later.

The funeral service followed 5 days later. Kayla's parents knew that many of Kayla's friends were off at college and they didn't want the funeral to interfere with anyone's school work, so they postponed it until the weekend. They are such kind, considerate, and warm hearted people. But the funeral was one of the hardest days of my life.

Though I'm only 20 years old, I've learned something very important about funerals: The absolute worst place to be at a funeral is in the reserved section.

I've unfortunately attended 7 funerals already, one being a "triple" funeral. Of those, I've sat in the reserved section of 4 of them. There are few worse feelings than this because reserved means you share an extraordinarily close bond with the deceased, usually as family and in some cases, as a best friend.

For Kayla's funeral, her parents allowed me, Sarah, Holly, and her other friend Ashley to sit with them. And at this funeral, purple ribbons were given to everyone in attendance. There was no formal "cause" or "awareness" behind these ribbons. It was simply to remember Kayla, whose favorite color happened to be purple.

And every year we take out our purple ribbons on special days - the anniversary of both her birth and death. Those of us closest to her also wear them for special events such as birthdays, graduation (and her would-be graduation), and weddings. Holly, Sarah and I also wear them on our bi-annual girl's nights we used to share with Kay. We do this because we want to try to live our life as if she were still here. Because, you see, if Kayla were still here, she would be sharing these important life moments and events with us, so wearing our ribbons is our way of including her and feeling her presence with us.

Thus, as of October 9th, 2010, purple ribbons have held great meaning for me.

(I don't ever talk about Kayla or the funeral or anything much related. It's been almost two years, but it is still way too much for my heart to bare. Some day I hope to make a more detailed post about Kayla and everything that happened, but for now, this will have to do.)

A year later I was diagnosed with Fibromyalgia, and for which you are all aware, the color of the awareness/support ribbon is purple.

After finding this out, I decided to look into what else purple ribbons represent. Of course, it represents many, many, things, but among them are a few I can relate to.

These include two other diagnoses I have and heavily struggle with, being ADD and Ulcerative Colitis. Purple ribbons also represent awareness for domestic abuse, which I had over a year of experience with in my last relationship that lead to all sorts of legal shenanigans (though domestic violence is a very serious issue, I do have to state that the second I finally realized I needed to get out, I fortunately no longer suffered any emotional turmoil over the situation. Making this realization most literally set me free and I haven't looked back once. The only aspect of it that even remotely pains me is that I allowed myself to get so low as to be susceptible and tolerant of something I knew was blatantly wrong the entire time it was happening. And although I am no longer  affected by my experience as others with similar experiences tragically are, it remains a part of who I am and I obviously support the cause).

And finally, purple ribbons represent the fight against animal abuse. Given that I'm somewhere in the middle of vegetarian and vegan and have been since I was a child (I never liked meat, but philosophical reasons eventually came into play later on) this adds even further to the appeal. (Note - I hate that I have to clarify this, but I am not a vegetarian of the PETA variety, for many, many reasons).

If you look up ribbon colors and what they represent, you're bound to find something you relate to in one way or another for virtually every color. But I certainly found the most things I could relate to with the purple ribbon.

I'd always planned to wear my ribbon in honor of Kayla on my graduation day. Both Holly and Sarah will be in attendance and wearing theirs, as well. And although we wear them to feel Kay's presence with us on this important day, we'll also be wearing them for a very different reason as well.

Four months ago, several of my doctors advised me not to return to school until my fibromyalgia was more manageable and under control (is fibro ever under control???). With one semester left, I made the difficult decision to push through it and take on the risks, despite a completely unknowable future in relation to my illness, which I was still very new to.

When I finally accepted my diagnosis, I made two goals, one immediate, one long term. The long term goal was to remain happy and avoid the common symptom of depression at all costs (so far, so good). On the other hand, the immediate goal was simply to make it to graduation. And when I started this blog, a big reason for doing so was so that I could blog my way through this semester, as the difficulty of finishing became incredibly clear after just the first week.

And now, with graduation fast approaching I soon discovered that the same day I walk the stage will also be my first Fibromyalgia Awareness day.

I've never really cared about graduation. I don't agree with the commonly held societal belief that a college degree equates to intelligence, qualifications, and capabilities, and I'm also someone who is definitely "not cut out for school." I learn better on my own, and fortunately I actually have a passion for learning. And I still maintain that I've learned more from my own outside reading and research than I've learned from my college courses!

So graduation was pretty meaningless to me. I even begged my mom to allow me to skip the entire ceremony because I just wanted to receive my diploma and go and saw no reason to make a big hoopla out of it. Of course she said no.

But having my graduation end up being on the same day as my first Fibromyalgia Awareness Day since my diagnosis gives it a bit of meaning. This has been one of the most difficult times of my life, and I began this journey with one major goal in mind: graduate on time.

And I did it. I'm proud not because I made it through all of the classes, tests, projects, essays, and all-nighters, but because in the face of adversity, I overcame. From the pain and weakness making it difficult to simply walk to class, to all of the sleep disturbances making it difficult to pull myself out of bed every day and stay out of bed, to the migraines and fibrofog hindering my ability to do my school work, to my sensitivity to smell interfering with my Chemistry labs, to all of the other symptoms that practically made me an alien to some of my peers, I did it. I made it.

Granted, I'm not leaving school with the degree I'd wanted. Up until this semester I'd been double majoring in Political Science and Psychology with a minor in Philosophy, but I only finished my Psych and Philosophy - perhaps one day I'll finish up my poli sci, but for now, I am perfectly content with what I've accomplished.

And tomorrow as I walk that stage, I will be proudly wearing my purple ribbon with my closest friends and family wearing theirs in support of me. Furthermore, with school out of the way, I'll have more time to focus on my situation and truly take the time to figure out this fibromyalgia thing and hopefully find something to help me better manage it.

All in all, I'm proud of myself. There were times I really wasn't confident that I'd be able to carry on and make it, and I'm glad I didn't give up. I hope that all of you fellow fibrobots out there wear your ribbons, t-shirts, or whatever, and contribute to spreading awareness about this debilitating illness. I know y'all will :)

Also, taking a second to get up on my tiny little soapbox here, I ordered some jewelry and silicone bracelets for myself and my family a month ago from, and it still hasn't come in! I checked the shipping information on the site and I don't think it'll be here in time as it still says "processing." I know they probably have a lot of orders right now, but they never notified me about anything being back ordered or something indicating that it would take this long to deliver, and they've yet to answer any of my calls or emails. Definitely not a happy camper about that! >:(

Monday, May 7, 2012

I haven't been blogging lately. Tried a few times, but ended up deleting them as they came to feel uninspired to me. A lot of things have been happening lately, and graduation is this weekend, after which I hope to get back to posting regularly. Hopefully I'll have time to post before that, though.

Until then, it's back to studying Chemistry for me (a task that takes 5+ hours now with a bad case of fibro fog looming over me, haha). Cheers! :)

Wednesday, April 11, 2012

The Curse of Invisible Illnesses.

I haven't been on here lately because I'm currently working on my senior thesis paper. Luckily, I'm obsessed with my topic, and I've pretty much blown through nearly 8 books on it in the past 3 weeks, thus, my recent neglect of the blogosphere.

So an issue has been arising more and more lately. My friends want to hang out. They want to go do things we used to do. They know about my fibromyalgia, but I don't believe they fully understand it at all. Most of them are so young that they haven't ever been exposed to illnesses, unless it was a grandparent. But I'm young and my illness is invisible, so I think my situation totally goes over their heads.

My friend Ali wants me to go see one of our favorite local bands. But I can't do that anymore. It's not just that I can't dance because of pain, or that I'm too exhausted to even enjoy myself, but I have visual and hearing sensitivities. The lights and sounds and just the "busyness" of being in a crowd would send me into sensory overload faster than Uncle Earl's heart at a Shakira concert.

The crazy lights I once loved during their shows would hurt my eyes and give me a headache. Being in a crowd of familiar faces and dancing around would only bring me a lot of pain when bumping into people, that is, if my joints can even handle standing for more than 10 minutes at a time. Likewise, the heat of being in the crowd would have me drenched in sweat within minutes, causing me to feel weak.The music that I love would be way too loud, causing nausea and possibly muscle spams. And all of this would eventually lead to tremors or muscle jerking, and I would eventually faint.

And Josh, he wants to go on a walk and have deep, philosophical discussions like we always have. But I can't follow, let alone participate, in those types of discussions with him anymore. If I'm lucky enough to actually be able to formulate profound thoughts, I can't articulate them. Josh and I built our friendship on challenging each other intellectually, and though I have philosophical conversations with many people, none are nearly as deep as those I traditionally have with Josh.

But I can't take 3 hour long walks anymore. I hurt, I'm weak, I'm tired, I'm out of breath. And I feel as though my IQ has dropped significantly since fibromyalgia. I have a strong sense of what I want to say or what I believe or am trying to explain, but I simply can't articulate it anymore. And I definitely can't understand what Josh spouts out.

Everyone wants to hang out. They want to go out and party. I tell them that I'm too exhausted or feeling too sick to do things. They don't quite grasp the fact that this isn't some regular flu. In two weeks, I will still feel sick. In two months, two years... it won't matter. Fibro is here to stay.

The usual scenario is that someone will ask me to hang out. I'll tell them I'm not up to it, and they're usually really understanding and they back off... for about two weeks. And then they ask again. And the cycle repeats.

I used to drink and go out dancing all night. I used to play video games. I used to be a bartender and would bartend at my friends' parties and get togethers for free. I used to run and lift weights. I used to take day long shopping trips, whether I actually bought something or not. I used to play guitar and jam with my guy friends.

But I simply can't handle these things anymore. My guy friends try to accommodate a lot and suggest the laid back alternative of video game night. But even that I have to turn down, since it causes sensory overload. All I'm really able to do these days without pushing myself too hard is go to the movies or watch movies at home. My very best friend has been the most accommodating, but I fear even she is growing bored of movies.

There are just so many physical obstacles, it's ridiculous. I feel crazy. I feel as though I'm making excuses. I feel incredibly guilty that my friendships are becoming difficult to maintain and I'm simply falling back on years and years of friendship to keep them going right now.

My friends at school are particularly bewildered by my condition. They'll say they see me walking to class or they saw me in class and that I looked fine. And sure, I can handle walking to my classes with a tiny limp and I pull off appearing normal. I walk 5 minutes to my class, where I simply sit for an hour or so once I arrive. Then I walk two minutes over to my next class, and sit for another hour or so. Finally, I take a less than 10 minute walk back to my apartment.

I look fine walking to class. And I look fine sitting in class. And this is what they see.

What they don't see, is that it takes me 3 hours to get ready in the morning. I try my best to look "normal" because I don't want my illness to become my identifier, not in my last semester of school. When I get ready in the mornings, it's a huge struggle to get out of the bed, to shower, to blow dry my hair, to put on my clothes and a dreaded freaking bra! They don't see all of the "time outs" I have to take during that process because of pain, or weakness, or exhaustion, or simply to catch my breath.

They don't see my many morning pills that I take, or the bi-weekly injections I give myself. They don't see the shower chair, or the painful morning stretching to help ease the stiffness.

They don't see what happens after class, either. Sure, they see me on campus and I look fine. But I'm only walking 5 minutes at a time, and I'm only sitting during class. They don't see what happens when I return to my apartment. The walking I did to class will likely be the only walking I'll do that day. I'll come home and take more pills. I'll pile on heating pads, turn on a TENS unit. I'll avoid eating because I'm so nauseous and by the time I eat, it's a very real possibility that I'll just throw it back up.

I experience a regular flare up of symptoms at night. It's usually when I'm at my worst. My sinus' will start acting up, I may have some tremors or body jerks, none of which they see. They also can't see me wincing in pain from muscle spasms. They can't see how exhausted I am and how difficult it is to go to sleep. They can't see how much my mental clarity has decreased.

Funny enough, my roommate is also very oblivious to most of this. This is partially because she is extremely self-absorbed and also because I do a pretty good job of never vocalizing what's going on. She either doesn't notice my involuntary movements or assumes they're intentional. My pills are also in my room, out of her sight.

She does know I frequently go to my room for 5-10 minute intervals throughout the night (I assume she notices, at least). This could be because of bathroom urgencies, or because I want to be in private while a tremor passes, or because I recognized an aura for a drop attack or for fainting.

I mean, if you don't vocalize pain, exhaustion, or many of the other symptoms, it's pretty damn easy to appear normal.

Bleh. How do I explain this to my peers? I've thought about sharing the Spoon Theory, or simply writing out my symptoms and briefly explaining them and just post it on Facebook so everyone will know, and hopefully understand better. Unfortunately, I hate drawing attention to this and it makes me feel extremely self-conscious. I can't help but feel like I'm making excuses, and it certainly feels as though it would come off that way.

It's not that I sit at home depressed all the time. I'm not depressed at all, and I'm fine with spending all of my time reading in the quiet company of my roommate. I occasionally go out, but it depends on how I feel and it depends on the activity. Some things I simply cannot do anymore, as much as I want to and as much as I've tried, it's just out of the question at this time.

I'm having a bit of trouble staying focused and organized right now. I guess my point is, unless I vocalize what's going on, people around me assume I'm fine. It's the curse of the invisible illness. I love it in that I can conceal my illness from strangers and have control over who knows and who does not, but I hate it when it comes to my friends. They can't comprehend what goes on within my body, and I don't know how to make a bunch of 18-22 year olds understand something like this. Especially since I used to be so active before.

I also never keep up with Facebook anymore. I was always terrible with keeping up with internet shenanigans, but now... well, it's like anyone with a bad flu. Generally, you go on a hiatus until it subsides. But my "flu" won't subside. I simply don't want to deal with the internet or phone, largely due to the fact that I know doing so will cause me a lot of stress and guilt. I know people will and are asking me to hang out, and odds are, I'll forget that they even contacted me before I can respond, which usually leads them to believe I'm intentionally ignoring them. When I do respond, I'm just telling them the same thing I've told them time and time again and although I can see they're trying to be understanding and supportive, their disappointment is more than clear.

I just don't know what to do at this point. I know what I'm going through is real, but I can't help but feel like I'm making excuses or that that's how it's going to come off. I know this is something everyone with an invisible illness deals with, so if anyone has any advice, I'd greatly appreciate it right about now.

Tuesday, March 27, 2012

Medical Marijuana.

Note: Experiencing a lot of fibro fog today, so please excuse errors, disorganization or the like :)

I realize this issue may be controversial for some, but it's something I can't ignore at this point.

I don't want to get into any sort of political debate about this, at least not on here, as it's not my intention. But I am, and always have been, an advocate for medical marijuana. In high school, we found out my mom had MS. My parents sat us down and we had a family discussion about what MS was, what to expect, what course of action we would take, ect... This is when my dad made a powerful statement.

He told us that if my mom's condition worsened, or if any of us ever developed some sort of medical need, that he would grow marijuana himself if it would help us.

Some people may see that statement as defiant and a blatant disregard for the law; I saw it as one of the most moving things anyone has ever said to me.

We all know what fate users, growers and dealers suffer if they are caught. Sure, a lot of them are criminals in other ways, and I could argue against the current drug laws until I'm blue in the face, but that isn't the point. There are many good people, who are otherwise ordinary, law abiding citizens who are imprisoned every year for partaking in marijuana use, whether for medical reasons or not. We waste our tax dollars on overpopulating our prisons with these "criminals" guilty of victimless crimes as though they deserve to have their rights stripped away from them and be treated as a threat to society, instead of utilizing our energy, money, and resources to bring actual criminals - like thieves, murders and rapists - to justice. And even more disturbing, we do all of this instead of helping those truly in need of the medical benefits marijuana can offer.


I digress. What my dad said was a great testament to his willingness to make a huge and courageous sacrifice - of his life, liberty, property, and happiness - for his family if such an unfortunate circumstance required.

I always remembered that. I thought by now such a process would start, as my mother's MS should have progressed. But luckily, it hasn't, which leads us to believe her MS is benign. Thank goodness for that, I'd be totally lost without that crazy woman.

But now, my father finds himself with a daughter with 4 incurable diseases, loads of syndromes (associated with fibro), and no spleen.

And after failed treatment after failed treatment, I'm becoming discouraged. Normally, I wouldn't try any of these hard prescription drugs. I honestly just don't feel comfortable with them, for many reasons. But I'll do almost anything to get me through this semester so I can graduate.

One week in particular, I was doing horribly. No sleep, tons of pain, no appetite due to nausea, ect... I went to bed at 7 after a couple of nights, since I knew it would be hours before I could actually fall asleep. My neighbors came over and asked my roommate why I was in bed so earlier. She told them what had been going on and the next day they dropped by again just to check on how I was feeling, which was just as horrid as the previous few days.

That's when they offered to let me smoke some of their bud. Considering my breathing issues, I declined.

While I am and always have been 100% behind medicinal marijuana, I still feel uncomfortable breaking the law, not because I'm committing a "crime" but because getting caught would lead to terrible, unjust, consequences.

However, they came  back an hour or so later anyway and brought with them weed brownies. Using marijuana to treat fibro had crossed my mind dozens of times before, but I wanted to use it as a last resort, given the risks of our current drug laws. Alas, being in such bad shape and with a chemistry test the next morning, I went for it.

The results were as follows:

-My anxiety level depleted
-My muscle spams stopped
-My involuntary movements decreased almost entirely
-My bizarre, itching and painful sensations were still present, but not nearly as intense
-It was the first night of the week I didn't vomit
-My nausea was gone and I ate for the first time that day, the fourth time total in 5 days
-It didn't take my pain away completely, but it brought it down more than it's been in months
-I fell fast asleep with no problem, and experienced a deep, restful nights sleep

My neighbors told me they only put in a tiny bit of weed in the brownies and I could tell it wasn't much. I wasn't too sure how it would affect me in my case and I was afraid it might even exasperate some of my symptoms. But I knew the chances were high (no pun intended) that it would at least take care of my nausea, so I thought, why not?

I experienced another week like this some time later, and my neighbors again came to my aid. Same results. I tried to ignore this as much as I could, but efforts were futile. I can't deny how much marijuana helped me.

I have never felt more strongly than I do now about medicinal marijuana. Marijuana alone, for me, can replace Lyrica, Tramadol, Hydrocodone, and Temazepam, all of which are hardly effective in the first place, produce unwanted side effects, are potentially dangerous and addictive, inconvenient to take and are outrageously expensive, even with insurance.

Marijuana, in turn, very effectively took care of the symptoms, produced minimal side effects, was much safer and not physiologically addictive, was cost effective, and took care of additional symptoms (my anxiety, muscle spasms, involuntary movements, and "sensations").

Wow. I really couldn't believe it. After the shock value subsided, I became livid that this substance is illegal for those who are sick and truly in need.

I spoke to my parents about this. I am not one for crying, especially in front of others. My family and friends have only ever seen me cry in cases of a loved one's passing since about the age of 10.

But as I explained my experience with cannabis, I felt my eyes begin to well up and I became teary eyed as I explained how it was the best I'd felt in months and how little pain I was in and how before I had really started to believe I would never feel that close to "normal" ever again. I was losing hope in what I saw as a losing battle, and was coming around to accepting living (more like tolerating) of a life of pain forever; but then I discovered the effects of this highly stigmatized plant, this glimmer of hope. It wasn't a cure, but it was a relief. This wasn't about "getting high" - this was about reclaiming my life.

My dad almost immediately offered to start growing.

I told them I'd done some research and found out more about Marinol, the THC drug. It's usually given to Chemo and HIV patients, but is sometimes used for those with chronic pain. I went through some fibro forums to see if anyone had tried Marinol and found only a handful, all of whom had successfully treated themselves illegally with marijuana prior to their Marinol prescription.

I asked if Marinol was just as effective as marijuana, and they either said yes, or something along the lines of "just about."

So now I'm on a mission to receive a prescription for Marinol to see how it works. My next appointment with my Rheumatologist is in a few weeks. I don't want to get my hopes up, but if he's on board and it does work, I can finally throw all of these stupid, ineffective, and expensive pills away and replace them with just one.

If not, my family and I have some difficult decisions to make. Fingers crossed.

Wednesday, March 21, 2012

O Sleep, Where Art Thou?

I've never been one for going to sleep.

The only time I ever desired sleep was when it was time to wake up. In college, I became determined to sleep as little as possible. I felt it to be an enormous waste of time. It pained me to think of all of the adventures I could be having and all of the information I could be learning during the hours which were reserved for slumber.

My freshman year, I did pretty well with no sleep. Having 4 or more hours of sleep a day was a rare occurrence. I pulled a lot of all nighters, for no particular reason. I attend a small, private university, and often times I'd be up during the night by myself, as everyone else slept. 2-3 hours was probably my daily average for sleep. And that seemed to be all I needed, too. I was never tired or low on energy - boy, do those days seem like lifetime ago.

By sophomore year I began sleeping about 4-5 hours a night, and that went on through most of my junior year, as well. Toward the end of my junior year though, I began to feel more tired and fatigued. I would try to sleep and instead end up lying in bed, eyes closed, for anywhere from 1-6 hours before finally falling asleep, and by then, it'd usually be time to wake up for class (worst feeling ever).

I began to notice other changes, as well. The pain in my hips and wrists seemed to be greatly interfering with my getting comfortable enough to sleep. And as someone who had always had the capacity to sleep no matter what the lighting or noise, I suddenly became completely intolerant to such external stimuli. There were many different times in my life where I actually couldn't achieve sleep without the TV on. But suddenly, the TV absolutely had to be off, or else I would never get to sleep. I also begrudgingly started wearing an eye mask to bed, since even the tiniest bit of moonlight would keep me awake.

When I finally would fall asleep, I'd usually wake up in the middle of the night drenched in sweat and completely uncomfortable. Sleep had always come easy to me in a lot of ways. For instance, I never understood why some people couldn't get back to sleep after waking up. It had never been an issue for me. But all of the sudden, it was a huge problem. I was also quite known for how peaceful I was when I slept, making no noises or movements. But suddenly I began experiencing attacks of weird sensations while I slept that caused me to move about throughout the night. Sleep starts also became a frequent occurrence.

Since being diagnosed with Fibromyalgia, my sleeping patterns are all over the place. Sometimes I sleep too much, other times I can't seem to sleep at all. I once went three weeks sleeping 14 hours a night plus taking one or two naps during the day. I would sleep for 14 hours straight, wake up, shower, eat, go back to bed, wake up, eat, watch some tv or read, go back to sleep, wake up, watch some more tv or read, then go to bed for the night. Spring break was a lot like this, but I had a more waking hours.

Then I return back to school and the situation is the exact opposite. Sunday night I went to bed around 1, but I didn't actually fall asleep until a little after 4. On Monday night I went to bed around 2 and did get to sleep until around 6. I ended up skipping my classes for the day because I was so exhausted. I tried to take a nap instead around 2 p.m., but didn't fall asleep until about 4, and woke up shortly before 5.

And then last night.

Last night I went to bed around 1, but didn't really start trying to sleep until 2. I did not get to sleep until 8 in the morning. To top it all off, I woke up an hour later and was positively unable to fall back to sleep.

To make things more interesting, I had my Major Field Exam today which I had to take with only having a measly total of 8 hours of sleep from the past 3 days. I'm not sure how I did, but now I have to turn my attention to my senior thesis paper I need to write by Friday. Ugh, ugh, ugh!

My body is killing me in every way possible right now.

For the record, I am also taking sleeping pills. I take melatonin, magnesium and zinc right before bed, and if that doesn't get me to sleep, I take Temazepam (which I have taken the past several nights). I used to take Ambien which really worked for me, but before I even finished the first bottle, it suddenly stopped working. So my doctor switched me to Temazepam, which also worked splendidly before suddenly stopping, again, before I even finished the first bottle.

Does anyone else seem to build tolerance like this to sleeping pills?

Oh well. I can do this. Sleep is for the weak ;)

Monday, March 19, 2012

Spring Break with My Friend, Fibromyalgia.

So I haven't posted lately because I've been on Spring Break.

And like most college seniors on spring break, I partied on the beach with my friends and drank until the sun came up.

No, no I didn't. I didn't go to the beach as so many of my peers did. I did not go on any road trips to exciting places like California or New York or Florida. I did not go to parties, or hang out at clubs or bars. I did not even visit but one friend, and technically, she visited me. I didn't do any of those normal things which college seniors on spring break do because I have fibromyalgia. I spent the vast amount of my spring break in bed - and that's not a complaint.

While I do point out the difference between my life and the life of my peers, it is not a complaint. My spring break was quite lovely. I enjoyed it. And while I can't bring back any crazy and awesome memories from my break as I'd like to, I was content with catching up on sleep and letting my body heal, even just a little bit.

Of course, it wasn't all fun. Unfortunately, we started the grueling process of getting our roof done, which went on for 6 days straight and still isn't finished. This means that from 8 in the morning to 12 or 4 (depending on the weather) in the afternoon, there was loud banging and lots of talking from the workers. For someone with Fibromyalgia who experiences the symptoms of sensory overload, this can be a problem.

And for me, personally, one of my most dangerous symptoms is the hearing hypersensitivity. My experience with this auditory sensory overload has often lead to muscle twitching, muscle jerking, muscle spasms, tremors, nausea, headaches, increased pain and fatigue, blurry vision, unrelenting anxiety, and various speech impediments. As all of this builds up, it eventually leads to syncope (fainting) and seizures.

So, as you can imagine, while the workers were there, I was in pretty bad shape, experiencing a handful of episodes a day. My parents would move me from one side of the house to the other to keep me away from the noise as much as possible. I had to be escorted any time I walked, so I mostly just stayed in bed, as my brother would graciously keep me company by delving deep into philosophical conversations about any and everything.

Ah, but once the workers finished up for the day, I was at total peace. I may have been fatigued and in pain and with a migraine or headache, but I was still at peace. I was going to bed at 7 p.m. and sleeping for 14 hours. I even took the occasional nap or two during the day when I could manage.

No, it wasn't much. I have no stories to tell my friends of how crazy of a time I had, and I have no stories to pass down to my future offspring about how young and reckless I was, but I still enjoyed it.

Obviously, there is frustration involved in being a 20 year old college senior unable to partake in normal college activities, but at the end of the day, I'm just grateful to be going through this ongoing battle at home with my family and friends, above all else. You see, I know what it's like to be young and fighting for your life in a hospital with no parents, no family, no friends. And while I'd certainly rather be a normal and healthy 20 year old girl, I can still appreciate these small things which are often taken for granted.

My mom was dead set on having me spend my spring break in my best friend's condo, who wasn't doing much of anything herself because she was attending a lab over spring break for extra credit. My mother insisted on sending me there to keep me from the pain of the noise. But no matter how annoying and frustrating the noise was, and no matter how much I love my best friend, the only place I wanted to be was home, with my mom and dad, and my brother and dogs.

And I did just that :)

Hm. Fibromyalgia seems to have an awfully weird way of keeping me grounded.

Tuesday, March 6, 2012

Lyme Disease.

I find it extremely unnerving that the Fibromyalgia community does very little in spreading awareness about Lyme Disease.

Lyme Disease is a bacterial infection spread via tick bite. Since Fibromyalgia is primarily diagnosed on the basis of exclusion, this makes Lyme Disease the single most important diagnosis to rule out. Why? Well let's start by checking out some of the symptoms of Late Stage/Chronic Lyme Disease:

-Severe Fatigue
-Hair Loss
-Muscle Twitching
-Facial Paralysis (Bell's Palsy)
-Tingling, Itching, Crawling Sensations (RLS)
-Burning or Stabbing Sensations
-Jaw Pain or Stiffness (TMJ)
-Double or Blurry Vision
-Abnormal Sensitivity to light, sounds, smell, and taste (sensory overload)
-Irritable Bladder
-Abdominal Pain
-Joint Pain or Swelling
-Muscle Pain
-Shortness of Breath
-Chest Pain/Pressure
-Night Sweats
-Heart Palpitations
-Faintness/light headedness
-Poor Balance
-Mood Swings
-Sleeping Difficulties
-Cognitive and Memory Dysfunction
-Loss of Sex Drive
-Dysmenorrhoea (painful menstruation)
-Unexplained Weight Changes (loss, usually gain)
-Chemical Sensitivities
-Increased Intolerance to Alcohol

Hopefully you noticed that essentially all of these symptoms overlap with that of Fibromyalgia. Some key differences: Bulls-eye rash at the site of the bite and Bell's palsy. Neither of these two symptoms are found in those with Fibromyalgia.

And sure, Fibromyalgia shares overlapping symptoms with a vast amount of other diseases and illnesses, but none are quite as similar as Lyme Disease. There's no denying it: the symptoms of Fibromyalgia and Lyme Disease are virtually identical - eerily so.

But don't assume that because you've never seen a tick on you, nor a bullseye rash, that you're in the clear. Don't even assume that if you've tested negative that you're in the clear. Many people with Lyme Disease (or "Lymies" as they refer to themselves) never saw a tick and never saw or noticed a bullseye rash. This makes Lyme Disease almost as difficult to diagnose as Fibromyalgia.

Two of the most common tests used for detecting Lyme are the ELISA and the Western Blot test. These tests tend to be extremely inaccurate (I've seen rates listed anywhere from 30% to 66% accuracy) and can produce both false negatives and false positives, though the former is a more common occurrence. Should you receive these tests, it's imperative to have them sent to a Lyme literate lab, which there are only a few in the country. They are the best and most accurate at reading results.

Lyme literate doctors or nurses (LLMD/LLMN) are also far and few, but if one is within your area, I would suggest you see them as well. In the event that you test positively for Lyme Disease, it is absolutely paramount to seek out an LLMD or LLMN.

Lyme Disease is just as controversial and complicated as Fibromyalgia. Chronic/Late Stage Lyme Disease is often questioned as to whether or not it exists, but most controversial is the treatment of Chronic Lyme, as it is treated with long-term antibiotics. That's right, unlike Fibromyalgia, there IS a cure for Lyme Disease!

Though the fatality rate of Lyme Disease is very low and death is actually extremely rare, it is still a very real possibility in the event that Lyme Disease is left untreated. Fatality generally occurs when the disease spreads to the heart. If the possibility of having a cure for your illness isn't enough motivation to go get tested, perhaps this risk of death will be.

Fibro and Lyme are so similar that they are very often misdiagnosed as the other. And although passionate Lymies (which appear to be very common) will most likely tell you that only Lyme is misdiagnosed for Fibromyalgia, this is incorrect.

In fact, I have a family friend who was diagnosed with Chronic Lyme after a false positive and sought out long term antibiotic treatment, which began wreak havoc her body. After nearly two years, she began to reevaluate her diagnosis and after continually receiving negative test results and her condition remaining the same, she was then diagnosed with Fibromyalgia, for which medications seem to be improving her condition.

I'd be surprised if anyone familiar to hanging out in a Fibro forum hasn't seen an infiltration by a Lymie, many of whom believe fibro doesn't exist and is truly Lyme, or simply that fibro is a symptom of Lyme (personally, I do believe Fibro is the major symptom of Lyme, but I also believe the syndrome exists independently of a Lyme infection). Lymies can sometimes be very hardcore and passionate, and unfortunately their hysterics do more harm to their cause than good.

But don't let their headstrong, sometimes irrational, approach take away from their message. Lyme Disease is a very real possibility for those who have been diagnosed with Fibromyalgia, and if Fibro patients have been lucky enough to have a doctor actually test them, it's extremely likely they were not properly tested, as doctors are even more uneducated about Lyme than they are Fibro.

Some Lymies may think Lyme Disease is the root of all problems (many are firm believers that Parkinson's, MS, Lupus, Fibromyalgia, Alzheimer's, and even ALS are all actually Lyme Disease in different stages), but their message of awareness is still very important, especially to those with Fibromyalgia.

There's no denying the incredible similarity between these two illnesses, and there are theories that they are closely related in one way or another, but it is my belief that the Fibro community and the Lyme community teaming up would lead to great things, much like how the Fibro community often teams up with the Chronic Fatigue community. Both Lyme and Fibro are in dire need of awareness, and it is my belief that we could only benefit by supporting one another. Both conditions are mostly a mystery to the medical community, the existence of either is highly controversial, testing for both is unreliable, it is highly probable that a link between the two exists, and at the end of the day, we're both having trouble going to sleep with all of our aches and pains. Because we are experiencing the same symptoms and similar medical and social obstacles, we have the amazing potential to understand one another and unite for a greater cause.

Unfortunately, the Lyme Community is overall resistant and unwelcoming toward the Fibromyalgia community and I don't see cooperation happening any time soon. If you thought Fibrobots were defensive, wait until you see a Lymie. They are often times set in their ways that Fibromyalgia is actually Lyme Disease. Again, a link between the two is actually very plausible, but we'll never know unless we push for more research for these illnesses both together to find any possible connections, and individually.

It breaks my heart knowing what good we could do by bringing these two communities together, and yet missing out on ever having the chance to do so.

If you've been diagnosed with Fibromyalgia, I strongly urge you to educate yourself on Chronic Lyme Disease and have yourself properly tested, perhaps multiple times. Please feel free to contact me for more information on what labs to have results sent to and what LLMD's or LLND's may be in your area.

All in all, regardless if the Lymies aren't willing to help Fibrobots (or vice versa), I am personally willing to help spread awareness about Lyme Disease, as I believe both Fibromyalgia and Lyme Disease do indeed exist. I can't express how much I wish the Fibromyalgia community would try to do the same.

I'll close with a question: How many of your doctors tested you for Lyme Disease? Did they speak with you about Lyme Disease as a possibility before diagnosing you with Fibromyalgia?

I was delightfully surprised to have every one of my doctors inquire about a tick bite before ever breathing the words "Fibromyalgia."

Monday, March 5, 2012

Lyrica Commercials

Another quick post.

Is it just me, or is the Lyrica commercial one of the most annoying things ever?

On one hand, I'm thankful for it because it at least familiarizes people with the term "fibromyalgia." In fact, I wouldn't have ever heard of Fibromyalgia without it. (Bit of a fallacy. I suppose it would be more proper to say I likely would not have heard of Fibromyalgia before the point of my diagnoses without it.)

On the other hand, it annoys me twofold:

First, I believe the only symptom mentioned is (muscle) pain, at least in the current commercial. I obviously do not expect them to take the time to list all of the symptoms, but because of this commercial, I have run into a good few people who are under the impression that Fibromyalgia is just "soreness" or "achiness" a la "the commercial on TV."

Commercials can only go over so much information at one time, though, right? Sure, but I still think there are things they could improve in order to be more accurate.

For instance, hypothetically speaking I would personally change the commercial to have the woman lying in bed looking as people with Fibromyalgia often feel - I want her to look similar to how people in flu commercials look, damn it! Not up and moving and then suddenly rubbing her shoulder blade with a squinched up face! Sheesh. She must have extremely mild Fibro.

I also wish there was more emphasis on the type of pain. You know, more descriptive words like radiating, debilitating, unrelenting. Perhaps a mention of how it includes other widespread and bizarre symptoms.

Secondly, the commercial leaves the impression that after taking Lyrica, Miss Fibro is all better to go out in the sun (with no sunglasses since her light sensitivity is now remedied), with her hair pulled back in a bun (since Lyrica is an antidote for the pain and headaches hair bands cause), and is fresh faced (since chronic fatigue has met it's maker!) and ready to tackle another day at work (presuming her fibro wasn't severe enough to put her job in jeopardy)! Ladies and gentlemen, it's a new superhero, FIBRO WOMAN.

Okay, okay, I'm not ignorant, I get it. They are trying to sell a product and it's their job to make it sound like it's a cure for fibro, cancer, and world hunger, and a downright gift from God himself. I get it. But it's just so misleading and inaccurate. I've yet to meet someone on Lyrica or any other single medication whose pain and other symptoms simply vanished. And if that were the case, I'd be hard pressed not to question if they were diagnosed correctly.

I'm currently on Lyrica, and it's helped. By helped, I mean it's taken my pain from a 9 or 8 to a 7, or a 6 on a good day. And that's in combination with tramadol, a sleeping pill, some medication generally used for Parkinson's, and who knows what other prescriptions (I try to take as few as possible). It's also in combination with the 23987429387 brazillion supplements I take, my physical therapy, my healthy(ish) diet, and my overall positive attitude. All of that money for my pain to drop by a point or two. Sigh.

I was once sitting in a room with my Resident Advisor who was aware of my fibromyalgia when the Lyrica commercial came on. "Have you tried that?" she asked, with a look of eagerness to help (after all, she had just discovered that Lyrica practically brings about world peace). I told her I was currently taking it.

"Does it help?"

I begrudgingly responded with my Likert pain scale.

"Well how long have you been taking it? It probably just hasn't had time to take full effect yet. I'm sure if you give it time you'll be back to normal in a few weeks!"


Whatever internet expression of frustration and disappointment you prefer.

No, Anne, Lyrica is not the source of rainbows and butterflies. It will not ensure every fluffy puppy goes to bed with shelter and food tonight, it is not the answer to the inevitable and impending zombie apocalypse, and it is not a cure for Fibrolmyalgia - primarily because, at present, there is no cure.

To be clear, I actually love my RA (not to be confused with my RA doctor!). She's the sweetest, most genuine person ever who is actually very bright. But she also happened to be involved in a big reason why I hate this commercial. :)

Like most things in life, I wish fibromyalgia was as easy as it is on TV. Where's my hardhat and blue prints? :(

Alright, roommate is back and we have our senior seminar presentation to put together. Positive thoughts to anyone going through a particularly rough time right now, and air hugs to all of those Fibrobots out there!


Generic Symptom Lists

I'm unsure as to how often I'll be writing this week, as it's Midterm week and I'm going to be putting forth all of my energy toward not stressing out too much so that a bad flare doesn't follow. Feeling a bit incoherent today, but here's a little something :)

I don't know if I'm alone in this, or perhaps due to my age and inexperience I simply previously had a very naive  perspective in this regard, but I just don't care for generic lists explaining medical conditions.

When I was first told my diagnoses was "probable fibromyalgia," I, of course, went home and looked it up straight away. What I found was that many internet sources listed the following symptoms: widespread pain, fatigue, sleeping difficulties, and anxiety and/or depression. Some sites would specify in more detail what sort of pain, such as stiffness, joint pain, muscle pain, ect... Other sites would include additional symptoms such as headaches, irritable bowel syndrome, and concentration difficulty.

I remember thinking "Hm. Well, good, this seems manageable." At this point, I was still thinking medications would have me up and out of bed and feeling great again in no time! How wrong I was.

To reiterate, it was probably naive of me in failing to fully grasp the severity of the symptoms, but on paper, it just seemed so much easier and simpler than it actually turned out to be. Truth be told, I really did not think much of the diagnoses. At least not until things became worse, not better, even with medication.

Another grievance I have is how many symptoms are left out of those lists, such as dizziness, disequilibrium, muscle spams, twitches, jerks, tremors, and all of the various sensitivities. Just to name a few. Or that the symptoms of fibromyalgia have the ability to cause additional symptoms themselves.

For example, I, like many others with fibro, experience hypersensitivity to light, sound, and smell (some people also experience sensitivity to taste). This is something often not included in symptoms lists, and I thought I was going crazy when it began. Even more scarcely mentioned are the symptoms sensory overload may cause as a result. One such possible symptoms is syncope, or fainting, a symptom which I have grown to become quite familiar with.

Now, don't get me wrong - I know those generic symptoms are meant to be general and used as a brief overview of what certain medical conditions are like, or entail. I also understand that if you have a certain illness, it's your personal responsibility to educate yourself and do further research.

But let's be realistic here: if someone tells you they have a disease you don't know much about, you're probably going to go onto one of these sites and glance at this generic list, and unless something like paralysis or death is listed, you're likely not going to think much of it. My qualm is that when people do this upon learning I have fibromyalgia, while they think they now possess a greater understanding about what I'm going through, I know that they still have no idea.

What I've learned is that you don't really "get" the sufferings and daily obstacles an illness entails until you take the time to read or listen to those who suffer from it themselves. Sufferers tend to tell quite a different story than generic lists do.

Upon making this revelation, I found myself hanging out in forums of all sorts of illnesses I thought I previously understood. It was quite an eye opening and humbling experience, and I suggest you do the same, especially in the event that you meet someone with any sort of illness.

In depth, count-by-count explanations about "A Day in the Life" of someone with (insert illness here) is often such an enlightening experience, whether you can relate to it or not (which probably explains the success and popularity of The Spoon Theory). Even articles attempting to explain the effects of these symptoms can't begin to suffice compared to a raw explanation from a sufferer.

In the end, "widespread pain" doesn't begin to cover the nights where pain prevents me from falling asleep for hours, or how it wakes me up crying, or how the shower can sometimes be one of the most painful and stressful experiences of my day. It doesn't explain how it can keep you bedridden for days, leaving you to feel like an empty shell of the human being you once were.

"Sensitivity to Sound" doesn't begin to describe the inconvenience, frustration, physical discomforts, embarrassment, and even danger of the time I fainted at a conference in the middle of a speech by my favorite speaker.

"Concentration Difficulty" can't truly describe the anxiety and anger of a weakened word recall when my professor calls on my during class, or the embarrassment of constantly forgetting entire conversations, or a diminished comprehension leaving me unable to even read or write a sentence at times.

I could go on, but I think you get the point. If you truly care to understand how a person suffers due to illness - if you truly want to understand what it's like to spend a day in their shoes - then just listen to them. Don't undermine their agony and distress by visiting sites listing symptoms written by authors who've never experienced the symptoms themselves, and then go on assuming you know all there is to know about their day-to-day struggles. These lists just don't do the plight of the sufferer justice.

Once you make an honest effort to understand someone, I believe you'll find that a multitude of opportunities to learn, grow, and connect with others will present themselves.

Thursday, March 1, 2012


What is fibrobotics, you ask?

To answer that, we must first assess how the term “fibrobot” came to be.

It is a long standing joke in my family that I lack emotions and am reminiscent of a “robot.” You see, I am quite difficult to anger. Even when I am angry, it often goes undetected due to my uncanny ability to be facetious. I believe feeling anger and acting angry are two very separate things. You can’t always help how you feel – but you can control how you express it and act about it. So, when angry, I act and speak in jest in order to make others and (especially) myself laugh and more comfortable. And it works, every time.

It’s the same with being sad or nervous. In fact, the only time others have ever seen me cry has been due to death of loved ones. But by and large, to those around me, it seems as if I never experience emotions considering my lack of their expression. My feelings, positive or negative, are extremely private to me.

As you may have deduced from previous posts, it takes a lot to alarm me, even with my body. I (wrongly) assume most symptoms are normal and not a big deal and I don’t want to make a fuss out of them. I adapt extremely well, and silently and privately accept things as they are and make adjustments accordingly. This, too, has lead to speculations of my secret life as an android.

I am also very logically driven and lean toward science, evidence, and other analytical processes. I am inquisitive, calculating, and perspicacious, and none of this helps my cause to culminate comparisons to an automation.

Thus, references to my being a cybernetic organism is a frequent occurrence among my circle of family and friends.

Alas, Cyborg I am not.

I just am - I happy, laid back, and possess an unquenchable thirst for knowledge about the wonders of the world; but I digress.

Upon my diagnosis and becoming more involved in the fibromyalgia community, I noticed all of the charming little nicknames used for those with fibro, such as fibromites, fibromyalgics, spoonies – you catch my drift. However, none of these seemed fitting for me.

Then one day, an odd conversation with my cousin lead to the use of the words “Fibromyalgia” and “robot” in the same sentence. Instead, I inadvertently blurted out “fibrobot”. It’s simple accidental portmanteau really, but with fibromyalgia, I believe such speech blunders as involuntary portmanteau, spoonerism, malapropism, and metathesis occur more frequently - so I like to blame this on my fibro fog.

“That’s what you should call yourself – a fibrobot,” my cousin said.

After some discussion, we decided the term to be quite fitting due to my “robot tendencies,” not only for me, but perhaps anyone with fibromyalgia.

For example, with FM, you feel everything – everything - from every drop of water dispensed from the shower faucet or pouring from a rain cloud, to every sensation of the wind, to every hair movement and beyond – our bodies feel everything.

A robot, on the other hand, feels nothing.

With fibromyalgia, you lack much, if any, control. There is no control of when your flares occur, of good days or bad. No control of the severity of your pain, what kind of pain, or where it hurts. There is no control as to what medications will work for you. There is no control of what symptoms you experience and those which you do not. There is no control over your energy or how many spoons you possess for the day. There is no control of what plans you will be able to keep, and those which you will be forced to cancel last minute. There is no control in discovering a cure. Okay, maybe no control is too strong, but it is minimal.

Bottom line: There is very little control over a life with fibromyalgia.

Ahh, but a robot is very much in control. It is programmed to be productive and efficient and is equipped with the intricate processes to work accordingly (in theory).

Plus, robots are just plain cool.

Ergo, fibrobotics, to Fiona and company, is a way of taking on the ways of the humanoid. Less negative emotion and feeling. More control.

Now that’s not to say the objective is to adopt all of the ways of the bionic person. Even if that were plausible, the purpose is not to be completely devoid of emotion or feeling – it’s about finding a balance. Again, less negative emotion and feeling, more control.

 Fibrobotics is about the steps along the way to achieving these goals, and Fibrobot is my label of anyone suffering from this debilitating illness who is striving to overcome it, accomplish these objectives, and reclaim their life.

And I like to think everyone with fibromyalgia is a fibrobot. :)

Wednesday, February 29, 2012


Finally, my fibro story.

I’ll make this as short and sweet as possible.

I don’t know exactly when it starte, since the beginning of my pain was very sporadic and isolated, and I didn’t experience a full flare until November 2011. I'm not too sure if all of this is fibro related, but I did have various conditions I was diagnosed which are definitely similar to symptoms of fibro. So here’s a bit of a time line.

Age 12: I am diagnosed with ADD. I would slip up in weird ways, such as doing my homework, but forgetting to turn it in. Medication helps immensely.

Age 13: I begin to experience extreme knee pain during basketball and dance. No one can figure out what’s wrong. I adjust and push through it.

Age 14: I begin experiencing joint pain not only in the left knee, but in both shoulders and right ankle. Again, no one can figure this out. It is assumed to be something genetic, since my father has had surgeries on both of his shoulders, one of his ankles, and has knee problems.

Age 16: I begin having intense jaw pain which often causes headaches. My jaw also begins to pop and lock up frequently. I am diagnosed with TMJ and purchase a $1,000 splint to help, but unfortunately lose it at work two weeks later when taking it out to speak to a customer (the splint gave me a crazy lisp). Due to how expensive it is, we do not purchase another splint, and I figure out how to adjust by quitting certain habits that noticeably aggravated my condition.

Also diagnosed with Meniere’s Disease (I find this worth mentioning here due to MD symptoms overlap with Fibro symptoms).

Age 19: Diagnosed with Ulcerative Colitis. Like MD, I mention this due to a symptom of Fibromyalgia being irritable bowel syndrome.

I also begin experiencing excruciating hip pain. I am an assistant manager at my job and on my feet all day and the pain is interfering with my work.  I can hardly stand up straight after a few hours. Go to the doctor, and no dice as to what it could be.

Then I begin experiencing pain in my hands and wrists, all the while still experiencing pain in the previously mentioned joints. Finally, a Rheumatologist declares it arthritis associated with my UC. Medications do not seem to work.

I am having difficulties sleeping. I will lay in bed, eyes closed and covered with an eye mask, no sound, and will not be able to fall asleep until 1-4 hours after lying down. Once asleep, I wake up frequently.  This is due to reasons unknown and also due to pain in my wrists and hips. Sleep studies are ordered. I am diagnosed with insomnia.

Age 20: Wake up sick with a fever. After a week, the fever breaks, but still feel sick. Become winded just putting on my make up and drying my hair. Same day, standing up in the shower exhausts me and causes me to feel faint and the feeling of water against my skin hurts. Go to UrgentCare.  Doctor says it’s my UC flaring up and prescribes predisone.

While he said it was due to a UC flare, I had been in near-total remission of my UC for nearly a year and was currently having no UC symptoms. Feeling the same after finishing predisone, I head to my primary doctor.

He orders blood work, the results of which all come back immaculate. He suggests, mainly due to my pain when showering, fibromyalgia as a possibility. Initially, I refuse to accept this diagnoses, as I am one who needs to see evidence, so I push for further testing.

I have frequent appointments with my primary doctor, and seek a second opinion from another family doctor who also suggests fibro. I go to my gastro to see if he thinks my joint pain is arthritis associated with UC and if my current symptoms are just a flare up as the UrgentCare doctor suggested. He says arthritis associated with UC is not as widespread as I am experiencing, and he also suggests fibromyalgia upon hearing my symptoms and checking for trigger points. Go to a neurologist. She has no clue what’s going on, but orders test after test to rule out diseases such as Lupus, MS, ALS, and Parkinson’s. All tests come back negative. Go get a second and a third opinion from two other Rheumatologists. Both suggest fibromyalgia, and one is sure of it after ruling out Lyme Disease.

I did not inform any of these doctors that fibromyalgia had been suggested (mainly because I was so stubborn to accept the diagnoses myself). All sent me through an ungodly amount of testing and I was going in for blood work on a nearly bi-weekly basis.

January 2012
: I finally accept my diagnoses of Fibromyalgia.

In less than a month I went from running 3 miles 4-6 days a week and lifting weights 3-4 days a week, to being bedridden and bound to a wheelchair or walker my entire Christmas break. My social life consisted of my parents and my doctors appointments. And all of it happened before my last semester of university.

So now, with graduation looming near, I am determined to graduate. My fibromyalgia is severe, and I’ve yet to find an effective treatment, but I will do it. I pinky promised myself I would - so you know it's serious.

Tuesday, February 28, 2012

Ulcerative Colitis.

At the end of my freshman year of college, just hours after having moved out of my dorm, I began feeling sick.

And I was sick for two whole weeks. Very sick. Given that I have no spleen, I have to be extra cautious, so whenever my fever hits 101, I have to go into the hospital for monitoring. During this particular sickness, I was in and out of the ER on several occasions.

Alas, the fever finally broke, and all was returning to normal. Well, not completely. I was still having diarrhea. I figured it'd pass soon, so I thought nothing of it.

One month later: Still having diarrhea on occasion. Now with more urgency. And a little constipation thrown in just for fun.

Three months after sickness: All of the above, plus severe abdominal pain. More irregularities in bowel movement and habit, I was going more frequently and texture was different. I also experienced irregularities that I've yet been able to efficiently explain.

At five months, it became obvious to me something was really wrong. But given the content (is that the word?) of the situation, I told no one.

My sophomore year of college, I was in a school apartment and had no relationship with my roommate, so keeping this problem a secret was no problem since I had my own bathroom. My parents were also able to remain oblivious, but I had to let my boyfriend in on what was going on. I told him I was having bowel problems and we left it at that. It's the only time I ever spoke of it.

I knew I needed to get checked out, but I knew that meant I'd have to have a colonoscopy.

Being a psychology major (and someone who studies psychology more on her own than at school), I am well aware of the process of desensitization. But I swear it only makes it worse for me. When I lived in the "city" I was never around bugs, but when I saw them, I loved them. All of them. I picked them up and played with them without hesitation.

Then I moved to the country. Bugs. Everywhere. All of the time. The same bugs I'd always been fond of. Suddenly, instant phobia. Even of, and especially of, bugs with wings - not excluding butterflies or lady bugs here, either.

As I began to study psychology and become familiar with desensitization, I worked with my roommate to overcome this phobia. Efforts were futile.

With some things, however, I'm unable to even truly try to desensitize. An example of this would be surgery.

In the hospital, I underwent nearly 20 surgeries. I am no stranger to this. But with each surgery came more fear. Anything resembling surgery and I lose my shit (no pun intended).

Well, a colonoscopy is certainly no exception. Not that anyone really fancies colonoscopies.

Regardless, I dealt with my pain alone for a year and a half after first experiencing the symptoms, which were relentless and progressively growing worse.

Then, one day, I arrived home from work. It was around 9 a.m. I had worked the night shift and spent the entire night up on the roof with one of my employees/friends.

I was ready to crash when I got home, but I wanted to keep my best friend, Kayla, updated on the night while my memories were still fresh. The "employee/friend" was also a target for me in more personal matters.

I wrote out the message and sent it to Kayla over facebook. I then closed my laptop.

"Boop" - someone IMed me on Facebook chat. Usually, I'd ignore this and keep the laptop closed. But this time, for some reason, despite being exhausted and after some hesitation, I opened my laptop back up.

It was my other best friend, Sarah: "Do you know what's happening with Kay?"

I won't go into detail now because I know I'll make a few posts about this at some point, but basically, Sarah had just found out that our dear friend Kayla had been in an accident.

We spent the next few days in hospital waiting rooms and at the Kayla's bed side until she passed.

I was devastated.

Almost immediately, I experienced a new change in my bowel habit - blood.

I ignored this at first, until there was finally enough blood to alarm even my aloof self. I googled it, and Sir Google seemed to think this a fairly urgent problem. So, I begrudgingly let my mom in on what was happening and what had been happening for the last year and a half.

Appointments were made with several Gastroenterologists. I quickly decided I did not want a male, meaning my mom's gastro, who is also attractive, was out. Thus, we turned to a doctor we had no experience with, but who was highly recommended.

We were paying the rates of appointments with the actual doctor, yet every time we were sent to her P.A. (I think that's what they're called?). The colonoscopy was scheduled for two months from then.

I never even met the doctor performing the colonoscopy until the day of. She was an older, tiny, silly lady. She was straight and to the point, but also very silly, which is a good thing because I do nothing but joke when I'm nervous or in any sort of distress.

Turns out, the procedure was a breeze - the prep, well, that's another post for another day.

The doctor told us a bit about what she'd found, and explained she took a biopsy of the lesions. At this point, we didn't know much.

Finally, we received the call confirming the results about a week later. I forget exactly what they said to my mom, but my mom did specifically ask, "Okay, so she doesn't have Ulcerative Colitis or Crohn's or anything?" The caller then confirmed that I tested negative for any diseases. Cool.

We still had a follow up appointment the following week after the call. We go in, and of course, no doctor. Again. Despite the payment to see the actual doctor.

The nurse begins going through what was found in the colonoscopy and after a few minutes she nonchalantly says, "So you have Ulcerative Colitis and this is what we're going to do."

Say what? Run through that one more time for me.

I had little knowledge about UC, so my mom took over the conversation with a stern "We were told she tested negative for any diseases." Again, nonchalantly the nurse says, "No, she tested positive."

"But when your office called with the results, they said negative. I double checked on that fact and even specifically mentioned Ulcerative Colitis."

"Well I don't know anything about that."

"So my daughter has a disease, and because of your office, we thought she was in the clear for the past two weeks. And if we chose not to come back because someone at your office said she was fine? What then?"

You see, my mom made sure to ask this because two of my aunt's have UC, one has Crohn's, and another has Colon Cancer. One of them even has a j-pouch. So, my bloodline is not exactly equipped with healthy colons.

Despite the doctor being so nice and friendly, none of her P.A.'s were pleasant at any of our appointments. This particular nurse was not bothered at all by the fact that false information was given to us. I know the mistake was probably not hers and that she was likely not the woman who called with the results - but still, show some remorse, or some worry that we were given false information about something as important as an autoimmune disease. That is a PROBLEM. At least act like you want to fix it.

Anyway, so there it was. Disease number two. I was 19 at the time of the official diagnoses, 18 when the symptoms started.

A bit on a rant about this doctor - At this same appointment, I was given a lot of instructions as to what to do. I was prescribed suppositories and some other huge pills, which I was to take three times a day. Then, I was told to change my diet. I was not allowed to eat fruits or vegetables or anything wheat or with grains. The nurse told me I was to be on this unhealthy (her words) diet for 6 months, at which point I would come in for another colonoscopy.

Two huge problems with this diet.

First, I am a vegetarian. You take away fruits and vegetables, and you're basically leaving me with mac 'n cheese and mashed potatoes here. A subproblem here is that I also have food neophobia, meaning I don't eat much variety to begin with.

Secondly, I was raised on wheat bread and brown rice, and anything of the like. My parents raised me on the healthier alternatives of things, and I cannot even stomach white bread or white rice.

This diet was ridiculously unhealthy.

After a few weeks on it, I was actually losing weight because I simply did not eat. There was nothing for me to eat! I was absolutely miserable and felt awful, so I finally conceded to give my mom's male gastro another try.

My mom's gastro is... about 6'6", blonde hair, blue eyes, athletic build, pretty face, fairly young, and armed with intelligence, wit, gentle hands, and genuine kindness. Every time I see him, I have to do everything I can to refrain from gazing into his dreamy eyes over a foot above me and saying "You're pretty" to him.

This is not the sort of man I want searching up my butt and talking to me about my poop. No sir. Add all of this on top of the fact that I already have an issue with male doctors (which will probably be explained later), I did not want to go.

But I didn't know what else to do. So I dragged my feet to his office. He looked over the results of my colonoscopy and we told him everything that happened with the other doctor. He immediately took me off the lousy diet, and told me to simply listen to my body and what makes it react unfavorably (he suggested a food journal). Then he took me off of the million times a day horse pills.

He told me to stick to the suppositories and one other, once a day pill, and basically said I don't need to have another colonoscopy unless my condition worsens or something new occurs. Other than that, I may have one as a check-up sort of thing, but not for at least two years.

I told him that I had nothing against him, but that I would feel uncomfortable with him doing a colonoscopy, at which point he said I could have my appointments with him, but at the time of a colonoscopy he could have his female partner in his practice do it.

So, there you have it. The frustrating story of my diagnoses of Ulcerative Colitis.

I like to think that, in a way, Kayla was pushing me to finally seek help. If not for the blood, I would have ignored this problem for who knows how long. I know it was simply the stress of losing her that aggravated my ulcers enough to produce blood in my stool, but Kayla was going to nursing school, so I just like to believe this was her way of knocking some sense into me. :)

Meniere's Disease.

Note: I’m going to double post today because I’m eager to start writing about Fibro. While UC and MD are devastating illnesses, I have more experience with them and Fibro is still fairly new to me and has affected me more than the other two. I’ll still talk about UC and MD periodically, but this blog will primarily address my fibro. :)

I have a relatively large (Italian) family. In fact, I have more than 70 second cousins. Italians - they're family people.

 I am the product of the babies on both sides and the youngest of the first cousins (and most of the second). My family is very athletic and I always felt the need to follow suit.

We are a family made up of basketball players. At first, I resisted this and stuck to my love of dance, but eventually, I gave in around age 10.

I worked really hard at catching up to my peers, since they’d been playing much longer than me. I strived to make the “A team” my first year of middle school by competing in every league and attending every camp.

And I did it. I made the A team.

From that point on, I found myself in 3 leagues at a time, and at least two year round.

So what does this have to do with Meniere’s Disease?

Well, after a few years of playing, there came a point when I was no longer improving.

During one game, my mom noticed I was making odd swaying movements in the huddle, and afterward, she inquired about it. I explained that I was dizzy, and that swaying helped. I’d already been going through this for nearly a year, and I figured it was completely normal. One is bound to become a bit out of sorts when hauling ass up and down a court.

Regardless of what I thought of it, my mom became alarmed and took me to see a specialist. After a series of tests and questions, it was determined that I had an inner ear disorder. My “dizziness” was actually a manifestation of a migraine, and there was a lag between what I saw and when my mind perceived it.

At first, this only happened when I was strenuously exercising, but soon enough, it progressed to real, chronic migraines, and vertigo. Vertigo is when the room feels like it’s spinning out of control and is much more debilitating than dizziness.

These bouts of vertigo often occurred mostly when I woke up, and migraines seemed to have no particular pattern.

Upon explaining this to one of my aunt’s, a revelation was made. My aunt remembered my grandmother suffered from Meniere’s Disease, an inner ear disorder which causes imbalance, dizziness, vertigo, migraines, nausea, tinnitus, hearing loss, and ear pressure or pain.

After more tests and with this new information, my doctor diagnosed me with disease number one. I was 16 years old.

Every six months or so I’d go back into the specialist for these super boring hearing tests. I’m unsure as to exact reason why, but I assume it was to make sure I wasn’t significantly losing my hearing.

There is no cure for Meniere’s Disease, but treatments are fairly effective (for me, at least). Reducing sodium has helped me a lot, and mints do wonders with migraines. For the most part, I’ve been able to keep this in check with diet, medication, and certain exercises.

Aside from the occasional migraine, I was symptom free until being diagnosed with Fibromyalgia.