The Lymph Node

Ok.

Trying my very best and being more positive. I'm now confident that this most recent flare was triggered by some virus that my body has almost fought off all the way.  I've gone to Bikram two nights in a row and am definitely feeling more with it. Even though the lymph node on the side of my neck is still sore, I've got more energy and pep than I did on Monday. Absolutely. What is this strange lymph node I speak of? Well.

When I was fifteen I got very sick and no one knew what was wrong. Reallly sick. I remember being horribly fatigued and feverish and sore and nauseous, I don't really remember all of the symptoms, but I do remember this lymph node on the left side of my neck was what everyone was so scared about. It exploded to the size of golf ball. It was hard. It seemed to be the source of all my pain, I could barely even move my neck.

A doctor pressed on it to do a pain test, 1-10, 10 being the worst pain possible. I think I said it was around an 8 or 9 when he pressed down. "A good sign," he said.  I know my parents were afraid it was cancerous, but ultrasound and MRI proved it was just a crazy lymph node that was fighting off an infection.

But no one could figure out what it was. I went to an Infectious Disease specialist and was tested for many bizarre things--Cat Scratch Disease was in the running for awhile until I tested negative for the second portion of the test. The final diagnosis (and one no one ever seemed certain about): a vague decision that it was most likely a Staph infection.

I went on crazy drugs that helped me out (and turned my pee orange).

I had just been suffering through all the craziness while still going to school, though I'm sure there were a few days of not going to school. I definitely was taking meds while going to school and doing the Freshman/Sophomore shows and performing and feeling so sick. I remember I had gotten a haircut and was nervous that everyone would see how enormous this lymph node was and worry about me. I of course recovered after a few weeks but his lymph node has stuck around for 16 years. When it starts to get swollen and painful I know that my body is working hard to fight something off. Sometimes it is a precursor to me getting sick, sometimes it gets swollen and I never get sick, and sometimes I just feel gross while it makes its appearance. It is the oddest thing ever. It is like a crystal ball of health. When it appears I know I will either be feeling very poorly very soon OR I have an opportunity to fend off the illness before it sinks its teeth in and really take very good care of myself. I've also been sick many times without the node ever even making a fuss.

It has never gotten to the size it did when I was kid. But it still always makes my Mom nervous when I tell her its back. My Uncle has said, "You should just cut that thing out."

But I'd rather keep it and let it be a reminder to slow down. Plus, I really don't care for surgery to remove this sucker. It's unnecessary. Is it painful at times? Yes. But is it also a reminder I'm still kicking?

Yes.

A Re-Post I Found: Ten Things Not To Say To Someone Who Has Fibromyalgia

Ten Things Not to Say To Someone Who Has Fibromyalgia

I just found this gem. It is so true. A rare re-post, but very valid. Thanks, Deb!

A Hair Dryer and my Floor

I'd love to say I was a warrior this weekend and I at least went on a run or something.

But I've got nothing. A few long walks to keep the muscles moving. I was so overcome with fatigue. This felt different than regular fibro symptoms, this definitely felt like I was fighting off a bug. For one thing, my glands were extremely swollen. And that one lymph node on the side of my neck that has given me trouble since I was a kid has been tender and sore to the touch for about 5 days now---always a sign my lymphatic system is doing some extra fighting on the inside. I'm convinced now that this exacerbates all the fibro symptoms and it would explain a lot of the trouble I've had this week. But the most frustrating thing is that the thermometer reflects NO illness, no fever, no temperature. No, in fact it mocks me with a body temperature that is UNDER normal. I took it a few times. 98.4, 97.8, 96.4.

96.4?

Well, they do say women have slightly colder body temperatures. Maybe this explains the chill I've had this weekend? Or maybe I really am sick and that thermometer is fucking busted. Fucking thermometer.

I wanted to swim yesterday but it was all I could do to drag myself out of bed. I finally managed to hop in the shower and when I blew out my hair I ended up sitting on my bedroom floor with the dryer. As I turned the dryer off, hair only half dry, I layed down on my floor...simply overcome. I layed down for about 15 minutes, and when I decided to try to get up, it felt like I was summoning all the strength I had just to hold myself up. This realization that I could barely lift myself off the floor overwhelmed me. And I started to cry. How could I possibly train for the triathlon when I could not even lift myself off the floor...In that moment of extreme physical weakness, my whole heart and soul felt weak again. Sadness for my family, sadness for lost love, just...sadness.

I somehow picked myself up finally and started moving, I got myself out the door and spent the rest of the day doing errands, played the ukulele at night. Today was a bit better, forced myself up and out the door to meet my friend for brunch, followed by the Nature Museum and a walk through North Pond, and then to a Memorial Day BBQ. I wish I had more energy, I wish I could stay at the party longer, I wish I didn't have to explain why I'm leaving early to my friends, but the truth is, I am just exhausted.

The truth is, I feel like I've been experiencing recurring flares since February.

The truth is, I just want to feel healthy and right now I do not feel healthy. This is probably the unhealthiest that I have felt in so very long. This is probably the longest stretch of months that I have felt a general unwellness of varying severity almost every single day. I just want to feel that I can at least start the initial training period which I am now VERY scared about starting.

I guess all I can do is hope that these past few days have been so difficult because I really am fighting off a virus.

Tomorrow I will feel stronger.

Shiraz Me...or AM I SICK?

To be honest, I haven't worked out since the Bikram class. Started to feel better Thursday but still exhausted. Friday I just started to feel sick. Not only fibro sick, but sick sick like my body was fighting off a cold or some other nasty virus.

I wonder if my fibro symptoms worsen when I am fighting off illness? Or if they heighten when I have actually caught the cold? It might be worth keeping track of. I know the symptoms get worse every time I'm on my moon, I get PMS insomnia which jacks up the pain and fog levels. I slept until 1pm today. In so many ways this was amazing. I caught up lots. But laying in bed that long made me feel really awful, and it still didn't feel like I had slept. I wish i could wake up feeling refreshed more often, but it hardly happens.

So I wait to start feeling better. I've still been moving, been going on long walks to get to and from destinations instead of taking the bus or train, because I know at least if I'm moving I'll fight off some of the worse of the fibro symptoms.

I also wonder if alcohol consumption is causing more trouble than it's worth. It's not that I drink a TON but I do like a good glass of wine. I've had drinks several times this week. So adding in the fact that I've just not been feeling well, I think adding alcohol into the mix might be making things even worse.

Hopefully I will feel well enough tomorrow to get in a swim. Real training has to start in just a few days and I need to be ready enough to trick my body into thinking it's just doing something a little bit more than normal. Easing into this is the best way, just have a road block now that I'm under the weather.

Lightning Bolts and Fog

I affectionately (can it be affectionate?) like to refer to my nerve pain as 'lightning bolts.' When a doctor once asked me to describe what it felt like, I said it felt like little jolts of electricity in my joints or muscles. Kind of like lightning bolts. So when I refer to lightning, I am referring to nerve pain that can often be jarring and downright disruptive. At its best, it's just annoying. And I might shake my hands and think "Ugh. Dumb nerve pain." At it's worst, I will grimace, perhaps stop mid-sentence, and take a moment to work through the pain. I might even yelp because it is so sudden and stabbing.  I seem to be dealing with a lot of lighting the past few days.

Right now I am gearing up to train. I haven't really started entirely yet. I learned the hard way a few weeks ago that my body wasn't ready and so I've been doing what I can when I can and really listening to signs that I need to stop or I need to not be working out at all. I'm probably doing about 3-4 workouts a week at the moment--and not hard ones. I'm just trying to ease my body into the soon-to-be abuse and fool it into thinking it is just working a little harder than normal.

There have been some issues though this week. This dumb nerve pain is really acting up. I don't know if I'm having a flare or what, but I've really been getting lightning bolts in my wrists. Specifically my right wrist, but yes, both of them. And not just my wrists, I seem to be getting zapped all over, today my fingers were especially electric. And the pain in my chest really went off the charts yesterday at work. I was on the phone with a client and all of a sudden it felt like I was being stabbed by tiny little knives right near my heart. I started getting dizzy and struggled to keep a conversation going with the person on the other line, but my sentences were taking longer to get out as I tried to breathe through the pain. I was lucky and it subsided after two or so minutes. If this sounds horrible, well, it's really pretty unpleasant and it was very scary back before I knew what was happening...but now knowing it's just another one of the awesome symptoms of Fibro, I just breathe through pain like this and hope it doesn't last for hours. Usually it's just a few minutes.

Today I had lots of lightning bolts. I tried to shake them off. But when I got home from work, that was when the fog set in. My brain just felt so thick like there was something wrong. I tried to tell my roommate how I was feeling but all I could really say was that I felt 'strange.' All of a sudden I was struck with fatigue and fog. I've tried to explain what fibro-fog feels like to some and it's always hard to describe, but at its worst it feels like trying to think through a cloud of mist. It makes you feel like something is just awfully 'not right.' At its best it's just making you invert words and numbers and say things backwards. And in the middleground, you might just be looking at someone and know they're talking and you are trying to listen but nothing they are saying is going through. You forget things easily. I once forgot the pin number to my bank card for 2 or 3 days. Just, gone. GONE. Can this be frightening? Yes. Can I be at work and looking at the screen and completely lose comprehension of what I was just doing, or where to click? Yes.

Well I got home from work and felt so odd. So strange. I decided I should go to Bikram yoga and sweat it out. My other option was just laying down on the couch and humoring the fog and the fatigue and the nerve pain, but I've realized over the years that when I start feeling like this, (as long as its not an all consuming, I-really-truly-can't-do-ANYTHING kind of fatigue) I should push through it and move. And when I get all foggy and electric, I should really go to Bikram. It is very cleansing. I sweat all the bad toxins out and get fresh blood and oxygen moving through my body.

So I'm back from an hour and a half of sweating and stretching my ass off through 105 degrees and even though it was really challenging especially with the nerve pain and the fog, I ultimately feel a lot better and hopefully will start feeling a little better the rest of this week.

Note to self: PROMISE to do Bikram once a week, even when training kicks in. It is SO good for my body.

Why the Triathlon?

The triathlon, the triathlon, the triathlon.

I am crazy.

While figuring out how to best manage the Fibro symptoms, I somehow realized that I always felt the best when I was exercising. Somewhere along the way, before the diagnosis actually, I ran my first race ever. The Shamrock Shuffle. I had just started running again after a pretty painful hip injury. I was suffering from bursitis in my hip--completely unrelated to the fibro--and after a year plus of not being able to run anymore and being spiteful and hating all runners I'd see outside because they could run and I couldn't, I amped up my bikram yoga classes and started to heal myself from the inside out. 

Bikram yoga is amazing and restorative, by the way, and can definitely help with injuries. 

I finished the Shamrock Shuffle and it was only 5 miles but it meant so much to me. I was healing my body and my heart and proving to myself that I was stronger than I thought. 

A year and half later I ran my first half marathon.

A year after that I ran my second half marathon. 

I have never felt better than when I have been training for the 1/2s. Exercise is key in relieving your symptoms and it is important to not overdo it or else you risk fatiguing your body into a flare. A flare is a very stressful and uncomfortable period of time when your body is experiencing many of the fibro symptoms all at once even though you might have been feeling fine. When I have a flare, I am exhausted, I have more nerve pain, my sleeping gets messed up, and my body feels heavy and my mind cloudy.  Over-exertion is such a worrisome factor in this decision to compete in the tri.

But I'm getting ahead of myself. 

I decided this year I was not going to do a half marathon again. As healthy as I felt while training for the 1/2s, the amount of wear and tear it caused on my body was too much. In other conditions unrelated to Fibromyalgia, I have chondromalacia patallae. It is very common in younger female athletes, but it is a softening or damage of cartilage under the kneecaps. This causes a LOT of pain. Strengthening the muscles surrounding the knees as well as your hips can really help, but at the end of the day, 13 miles on shitty knees was too much. The injuries I sustained after the last half marathon made me think twice about running it again this year. I hurt my knee very badly and it took about 3 months for it to heal up. I needed something with endurance but less impact.

So I started to think about the triathlon.....

I had been thinking about it for years actually. I had been inspired by a former classmate, Natalie Sztykiel, now Natalie Taylor, who had lost her husband to a horrible accident just a few months before she gave birth to her first son. Natalie was only 24. And she wrote a book about her trials and challenges and recovery that year call Signs of Life.  It's a fabulous book. Buy a copy. In that year, one of the things she did was compete in a triathlon with her sister.  Natalie was such a beautiful and friendly sunny girl in high school. She was and is a lovely human. And I cried through her book and was inspired by her strength, and to be very honest, Natalie was the person to first give me this seed of wonder that perhaps I could one day do a triathlon.

Of course, I never really considered it. Not seriously. 

Until this year. 

To make a long story short, in December I had somewhat decided to take on the triathlon, but by January, flares had me thinking otherwise, and by February and March, the end of a relationship as well as the health complications of a family member both left my soul crippled. So there I was, broken with very bad fibro flares from the stress of life while trying to navigate the sadness and heartache from a breakup as well as the illness of a family member. And my whole world started to feel as if it were closing in on me.

It was emotionally and physically too much for my body and heart to handle.

And out of the rubble, this seed that had been planted long ago started to bloom.

It was in April that I really started to consider it, this crazy notion to bring my soul back and take control of my body and my life and heal myself from the inside out again. Only this would be bigger than the Shamrock Shuffle, bigger than the half marathon, this would be the biggest physical and emotional challenge of my life. Physically, because I honestly don't know if my body can handle it with the overwhelming fatigue and danger of overexertion. Emotionally, because this will not only mean that I am not letting fibromyalgia run my life, but because it will give me a goal to focus on while I heal my heart and gain the strength I need to help my family. 

I started to test the waters the end of April and begining of May a bit and took my very first spin class. I went swimming at my gym for half an hour. (I used to swim a lot as a kid but it has been years). I started to roll out a few runs. One week, I ran for an hour on Sunday, swam on Monday, and did a spin class/2mile run Tuesday. By Wednesday I was having one of the worst flares I'd had in months. For about 10 days I was exhausted--just completely fatigued. I woke up like I'd never gone to bed, my body was heavy, and my heart was sad that I would never be able to do this. I had done too much too soon, I had stupidly hurt myself and thrown myself into this state.

But then I found this amazing woman's blog. Living Well with Fibromyalgia. Like me, she had been diagnosed and then began training for a tri years later. She has now done a half Iron Man. Her story is inspirational and she has chronicled the many joys and difficulties in training as well as the flares from overtraining. But the fact is that she did it and she has done it multiple times. And I started to have the confidence that I could do this too.

So I devised a plan. I would space out some strategically placed workouts to at least get my body used to the idea of heavy workouts. I have been doing so for the past two weeks, just doing what I can, and not too much. 

And I signed up for the Chicago Triathlon and announced it to my friends on May 12th, Fibromalgia Awareness Day.

This goal means so much to me. Not just for my body, but for my heart and soul. 

It takes precedence over theatre right now. I am an actor but more important than performing or auditioning right now, is taking back my self. 

August 25th is the day!

I am stubborn and I will do this. Of course, I scoffed at my friends' suggestions to do the Sprint distance, which is much shorter. No, I said, like the stubborn girl I am. If I'm training for the tri, I'm training for it all the way. It is roughly a .9mile swim, 25 mile bike ride, and a 6 mile run.

Here we go!

What is Fibromyalgia? A Long Explanation.

Fibromyalgia is a complex little bugger. 

I was diagnosed in February 2011 after years of doctors shrugging their shoulders and saying all my tests were normal. I wasn't upset when I was diagnosed, in fact, I was relieved. I could finally put a name to what was going on. The onset of extreme exhaustion and fatigue, nerve pain, muscle pain, stiffness, disturbed sleep patterns and insomnia, cognitive fog, TMJ, stomach pain, chest pain, depression and more was not because I was going mad. It was not because I was making up this sometimes very debalitating pain and exhaustion. It was because I had been suffering from fibromyalgia.

There is a huge amount of controversy surrounding this illness to the point where I have often felt strange talking about it. Many doctors have questioned a fibromyalgia diagnosis as being a "catch all" for all things they can't identify. There is not a blood test or a scan. It is based on a physical exam that identifies tender points and a through a thorough evaluation of your case history and symptoms. 

But it was recently I realized how much I DO need to talk about it. My own family and many of my friends have been in the dark about this condition and that exacerbates the very thing that makes me upset. That people question whether or not you have it. That people question why you're ducking out of events. They wonder why you're so out of it and slow and tired or they think that you're just not paying attention, when the truth is you are just so exhausted and your mind is so thick with brain fog that your body is telling you to stop. 

Some days are better than others. Some days I feel fine. Some days I know I will be busier than others and I save a little energy for later and push through. And some mornings I feel like I've been run over by a truck. On occasion my sleep is normal but most of the time, I wake up at least twice a night, sometimes as many times as every hour when it's really bad. If I wake up only once I consider it a good night. If I sleep straight through, it is a blessing. But most of the time, even if I've slept 8 hours, I wake up feeling like I never went to bed at all. People with fibro have a very difficult time reaching REM sleep and so we never quite reach that restorative state that is so important for our bodies. We wake up unrefreshed. Waking up almost every morning like this is no fun task. Morning stiffness is another killer. I remember one of the first times I started connecting the dots. I thought it was just normal that everyone woke up sore. I thought it was normal that if you stayed in bed for too long your body would get stiff. It was only after finding out that other friends my age didn't wake up this way that I started realizing something was not quite right.

Another fun symptom is inflammation of the cartilage surrounding the ribcage but before I realized it was costochondritis (which mimics cardiac pain), I thought something was wrong with my heart. Just to be safe my doctor ordered an EKG and an Echo. My ticker was just fine.

Bringing awareness to the table is of the utmost importance. People don't know enough about it. And I can't get mad at my own friends and family when they question it if I never bring it up. 

Well, WHY haven't I been talking about it? 

Because I don't want to be defined by it. I don't want it to have that power over me. I won't let it.

I don't want to use it as an excuse for the things I cannot do when I am exhausted, or the things I need repeated, or the difficulty I have putting sentences together when the fog is thick. I don't want people to think I'm weak. But it IS time to start bringing awareness to the table. Sometimes I feel like Fibro is invisible. People question it because they can't see it. "But you look fine!" Or "But you do so much!" are things I sometimes hear. Just because I look fine doesn't mean I'm not fighting through the symptoms. I've just gotten good at dealing with it and not making a big deal out of it. In fact, when I'm taking care of myself, my symptoms are minimal and mild.

There is no cure for fibromyalgia. You can only try to relieve the symptoms. And the symptoms vary in severity person by person. Treatment varies as well, as one person may respond differently than someone else. Finding a treatment plan is a series of trial and error. I have personally decided that going on the meds to treat the pain are not worth the side effects. I have found success with diet and exercise and attempting to get normal sleep. Not sleeping makes everything worse. Your memory goes, the pain increases, the fog increases.

I started to experience my first symptoms in 2005. I remember little lightning bolts of electricity in my fingers and wrists and ankles. It would come and go. The rest of the symptoms amped up over the next several years but they really started in 2008-2011. Sleep problems, jaw issues, stomach issues, and weird nerve pain that felt like being stabbed by tiny little knives very quickly were the hallmarks of my symptoms. Surrounded by the morning stiffness, brain fog, fatigue, and ribcage pain, I knew there was something wrong, I just didn't know what. People with fibro are not hypochondriacs. The pain is real. It is thought that people with fibro do not process pain signals correctly and the result is increased pain. For instance, applying minimal pressure to one of the 'tender points' would cause great pain/discomfort for someone with fibro while someone without fibro would be just fine.  

There is no "one" identifiable cause of fibromyalgia. It is thought to be triggered by physical or emotional trauma, injury, or illness. It could be brought on by an autoimmune disorder, it is linked to Lyme disease, it is often thought to be a comorbid condition that exists with another condition. (And sometimes THIS is the condition that is undiagnosed that has caused the fibro). There are so many factors and there is not enough research.

I have my own ideas about how I developed Fibromyalgia. I originally thought that it was linked to a traumatic event that occurred in 2001. Without going into detail, as that is another story, I have always believed that to be the trigger. That same summer, however, I was in a car accident which could have been the trigger. In the back of my mind still is the theory of chronic Lyme disease or undiagnosed Lyme. 

I used to be a camp counselor and my doctor at the time in 2004 tested my for Lyme when I started to have trouble with my knees. The test came back negative. I immediately ruled it out. Last year I went to a kooky doctor who wanted to test me for Lyme again. I ruled HIM out. But more research on my end has shown me that Lyme tests are very inconclusive. False positives and negatives occur all the time. And undiagnosed Lyme has many of the same symptoms of fibromyalgia. I would like to get tested for it again, but with a Western Blot, which is a completely different kind of lab that needs to be analyzed by a Lyme Literate doctor. If it turns out Lyme is the cause, well, I've got a whole other slew of issues to deal with. But at least that would give me more insight as to what has caused the fibro symptoms.

That is a whole load of information.

This website has even more: 

http://www.fibromyalgiacrusade.com/What_Is_Fibromyalgia_.html

And this all brings me to what this blog is about and why this goal is so important to me. 

Stay tuned!