I Think I Can, I Think I Can

The other day I walked into my kitchen full of dirty dishes and saw a roach. To say the elephant is afraid of the mouse here is a drastic understatement. In quick action I grabbed my fly swatter and tried to convince myself I had the guts to whack it, but it was hiding. I quaked inside. I looked at the clock to see how long before my husband would be home from work. Hours. I jumped up and down and squealed like a little girl and felt a million roaches scattering across my body. Then I got a grip and dug out the Raid under the sink the roach was hanging out in, certain it crawled into my hair while I was doing so. So there I waited, quaking inside with a fly swatter in one hand and can of Raid in the other. Who says urban living ain't grand!

Needless to say the elephant won this round. So I set out to clean up the massive mess of overturned dishes soaked in Raid strewn about the counter. Sadly I lamented the days of leaving my dishes for later had finally come to a close. I washed and Lysol'd and swept and even cleaned the burner pans on the stove. No crumb was getting by me, least I see another creepy crawly and know there was something I could have done to prevent it! Then I moved on do do something else, but kept seeing insects scurrying around my house out of the corner of my eye. I became convinced they were emerging from every drain and between every wall crevice. Soon they were going to overtake my living space! So I had to do it again. I told myself, quite loudly in fact, that there were no insects in my house. There never were going to be insects in my house. I didn't see them and they weren't there. In fact they didn't factor into my life at all and were completely irrelevant to my existence. Flipping my brain to positive thinking was hard but I kept repeating it and sure enough eventually stopped tripping out like an adolescent waiting for the phone to ring. 

With startling clarity I remembered another time when my thoughts had to precipitate something actually happening. In fact I don't think it would have happened any other way. When I was living in San Francisco I could barely make it down three flights of stairs to take my dog out. I was disabled and broken and confused and scared and angry. Nobody knew how to help me and my life was quickly slipping away. The harder I tried to overcome it the sicker I got. Everyone had suggestions and plenty of criticism, but absolutely nothing of value to contribute to my situation. They just didn't understand, hell I didn't understand! But the line in the sand was before me. I either had to lie down and fade away or come up for air swinging. So I picked up a mantra and with more hurt and pain than I knew one person could even feel, repeated it over and over again every hour of every day for weeks and months until I was ready to figure out how to make it come true. I will get better. Today I may not be who I was before I got sick. But the woman who could hardly make it back up those three flights of stairs and had to stop on every landing to gather her strength, she just ran a mile this morning. Well most of one.

Thanks for joining,

Leah

The Fibromyalgia Blood Test

It hit the business wire a few weeks back a blood test which detects Fibromyalgia has been developed, registered with the FDA and is currently being sold. Holy shazam a-lam-a-ding-dong...WHAT! With rapt attention I poured over the clinical abstract and scientific research to get a grasp on what on earth had been unearthed. As it stands Fibromyalgia is a diagnosis of exclusion based on a collection of symptoms reported by the patient. There is no conclusive test to either confirm diagnosis or rule it out. Fibromyalgia symptoms vary drastically from patient to patient, people respond individually to different treatment methods and modern medicine is still searching for the cause and mechanism of all this mayhem. Well The University of Illinois College of Medicine at Chicago, in conjunction with a biomedical company EpicGenetics, says they have figured it out. "In the past, FM was claimed to be a rheumatic, neurologic or psychiatric disease despite the fact that there were no objective links to any of those pathways. Our findings uncovered evidence that FM is instead an immunologic disorder." BMC Clinical Pathology.

So what exactly is Fibromyalgia, according to this groundbreaking discovery? I desperately want to know what the hell caused my entire world to implode so I did a significant amount of research to figure out what this study revealed. In the simplest terms, protein molecules produced by white blood cells (cytokines) in Fibromyalgia patients suffer from a dysregulation disorder. They are supposed to send messages via an inflammation response to alert the body when something is wrong so the body can fix itself. Just one component of the immune system at work. But in Fibromyalgia patients these protein molecules are depressed. This immune development disruption makes Fibromyalgia patients more vulnerable to stress. And the perfect storm is set into motion... 

Now let me clarify the word stress here. This isn't stress as in, "Oh my God I am so stressed out!" It is stress like when a doctor tells a patient to come in for a "stress test." They are strapped with electrodes, hooked up to machines and made to run a marathon on a treadmill to measure the effect of stress on their body. Okay maybe not a marathon but you get my drift. A fundamental building block of physics discovered in 1660 called Hooke's Law explains stress as the distribution of external force on a material, resulting in strain. It wasn't until the 1920's stress became associated with psychological or biological mental strain. So let's dispel the confusion of the chicken or the egg. A person with Fibromyalgia has immune patterns already present that cause stress to wreak havoc on their nervous system. Yes, the "Oh my God I am so stressed out!" kind is a valid contributor, but so are a million other sources of external force on cells and molecules and peptides and lymphokines and whatever else exists inside a human body to make it a human body. Like I said, a perfect storm.

Clearly I am more impressed by the actual mechanism discovered unique to Fibromyalgia patients than any test which can tell me if I do or don't have it. Scanning the posts of my fellow bloggers tells me I am not alone in this skepticism. See cytokines have been a working theory of research for decades and are known offenders in a slew of other ailments. What this study gives us is the first way to actually measure a difference between Fibromyalgia patients and healthy or healthy/depressed controls. It's a big win, the first breadcrumb of a clue conclusively showing a scientific difference in Fibro patients. But like many things in life, conclusive proof opens up far more questions than provides answers. Is this immune dysregulation true for all people diagnosed with Fibromyalgia? All 12.3 million of us in the USA alone? How well does it differentiate between Fibromyalgia and RA, Lupus or a gazillion other immune disorders and chronic pain conditions? Is there enough information available to wrap it up with a bow and stock it on blood pathologists shelves? Perhaps time, and significantly more research on a greater population of patients, will tell. 

Thanks for joining,

Leah

Resources:

-National Institute of Health 

-BMC Clinical Pathology

-FM/a Test

-Yahoo Finance Press Release

*Blog author has not been contacted or compensated by any of the linked resources and makes a claim neither for or against the FM/a Test.  

Say What?

The other night I was watching my favorite freak show Oddities with one eye and doing five different things with the other. Then I heard something that made me pay attention. Seems there was an actual scientific study done on the effect of swearing loudly and sensory pain perception. It made me giggle, but I wanted to know more so looked into it. Seems to be yes, swearing does indeed increase a person's pain threshold, according to a study done at Keele University School of Psychology*. What's even funnier is they discovered this information while attempting to prove the opposite. That swearing contributes to the intensity of pain and emotional distress.  

Now this is not new news, in fact this information is a few years old. I found myself a bit irritated I was just learning I could control my pain with the F word. That knowledge would have been very valuable over the last few years. But I know it now so I set out to understand why. Scientific controls and hypothesis and double-blind aside I used nothing more than intuition and common sense. Could it be related to endorphins? The rush a person feels when doing something they shouldn't? An evolutionary gift from our forefathers allowing us to feel good for a moment, but not too long, lest we get lazy and eaten by a saber tooth tiger?

Then I remembered the day fondly when taking calculated risks wasn't that big of a deal. If I drank too much the night before I could sleep it off with Advil the next day. If I ate three pieces of birthday cake my stomach ache would dilute in a liter of water within a few hours. For goodness sake I was a smoker in my youth! But simple negligence in the past is a massive disruption to any sort of order in my present. I already have so many freakin' problems there is no way in hell I could handle any I actually choose to inflict on myself. Ahhh, the joy of aging, the joy of illness. But I do have to say this experience did leave me better off. I decided to test my own hypothesis. So I went out and had a few beers, and as I screamed expletives over the noisy bar I had more fun than I'd had in a while. And I remembered the joy of not always being prudent. And really didn't feel much pain at all.

Thanks for joining,

Leah

*Keele University School of Psychology

Open Wide

After I got that horrible flu that was going around I was left with a lingering cough and the distinct feeling I'd been punched on the right side of my jaw. The cough slowly lessened but jaw pain only got worse over time. I spent a few weeks in blissful denial hoping it would just go away until my ability to chew became noticeably compromised. Sigh. So I called my dentist and made an appointment. I'd experienced this joy before and hoped and prayed I didn't need another root canal and crown, which are quite painful and outrageously expensive even with insurance. But of course that's what it was. So with trepidation in my heart I went to the endodontist to get fixed up.

I've heard many a Fibro patient complain about the pain a visit to the dentist can cause. Somehow I had managed to evade that experience first hand, until this root canal that is. But sitting in that chair tipped back with my mouth propped open and head hinged back for an hour and a half quickly had me skidding teeth first down agony alley. First my jaw, which suffers from TMJ, clenched up. Next the muscles and ligaments surrounding the base of my skull and neck went into an inflamed spasm so severe I thought they were gonna snap. And then trauma set in. The tiny whisps of smoke and smell of my sizzling flesh as he cauterized my tooth canal sent me over the edge.

With trembling hands I left the office and went to my car where I promptly burst into tears. It doesn't take much to evoke my hair-trigger post traumatic response surrounding all things medical. As I sat and sobbed I took my mental journey back through every traumatizing pancreatitis hospitalization and the scariest two days of my life, those 48 hours when I'd had my strokes but they didn't know why my head felt like a sledgehammer struck it yet. I felt alone and small and buckets of fear. I remembered the high I felt when my doctor told me I was going to live. I dragged myself through nearly two years of painstaking and exhaustive recovery as I fought for the umpteenth time to get my life back. Then I looked up and dried my tears, noticing that the sun was shining and I was still here to enjoy it. So I said a quick prayer of thank you for the gift of my life and drove myself home. 

Thanks for joining,

Leah   

Let's Go Waste Some Time

I feel an excessive need to achieve. Still after all this time chronically ill my type-A drive hasn't gotten lost. Buried under a pile of laundry? Oh yeah. Fluffed up into dust bunnies the size of Weepuls rolling across my hard flooring? You betcha. Masked for years at a time behind medications, intentionally stifled and just plain ignored? Yes, yes and yes. But it always comes back to propel me to the next destination in my life. At some point along the way I had to accept this is just me. Will I spend the rest of my days driving myself nuts because I cannot meet my own expectations? Probably. But I figure banging my head against the proverbial wall of change is worse. Because at this point I am who I am. I've tried to change and this is what I am left with.

This weekend my husband asked me if I wanted to go to the coffee shop. He wanted to stroll through Spanish style architecture and interior design photographs on the computer. "It's a totally useless waste of time but it's fun," he said to try and entice me into playing, Let's pretend design our dream house, a game we both enjoy. His phrasing struck me like a slap. "This is what is wrong with our world," I shot back. "We view fun, mindless and relaxing activities as frivolous when in fact they are some of the most important things we can do."

Yet one more casualty of adulthood, being for the sake of being. Because just chilling out and relaxing in the moment on a mindless activity doesn't put dinner on the table or pay the rent. It doesn't help the kids with their homework, find a doctor who knows how to treat Fibromyalgia or approve a person who can't work for disability. It doesn't result in promotions, raises, clean houses or folded laundry. Something I had nothing but time for as a youth doesn't even register on my priority list as a grown woman with a life to accomplish. But not taking moments of relaxation and enjoyment makes me grouchy and take life far too seriously, and ultimately hinders my progress far more than a few wasted hours of fun. So what did we do? Grabbed the computer and dogs, jumped in the car and went to that coffee shop. It was a nice day out but the glare on the screen was terrible so we really didn't look at all that many pictures. But we sat in the sun and sipped our frothy beverages and talked about a million different things, and nothing at all.

Thanks for joining,

Leah

It's Just Harder

Sometimes I get so entrenched in life with chronic illness I forget everyone doesn't suffer from some terrible malady or another. Don't get me wrong, I know we all have our problems, issues and drama in life. But not everyone is sick. As I listened to a friend plead despair the other day over how darn hard this is, how unfair it is, how it hurts so bad to not be understood on both a physical and emotional level, I could only nod my head in agreement and offer my shoulder. Life is just harder when chronically ill, it just is.

I find I have to get up each day and pray to God my chemicals aren't off and I'm not in pain. Which is actually quite funny considering I suffer from a central nervous system pain syndrome. Needless to say my chemicals are usually a little off, and I'm frequently in pain. But the show will go on without me, if I fade into the wallpaper and give up my fight, so I muster up my strength and try to join in every so often. I find myself bargaining my way through many setbacks and disappointments but I'm not quite sure if it's Fibro or me I am negotiating with, or what good it will even do? And quite frequently it seems if I don't rise from the ashes, adjust my expectations and decide the only person who is going to change the situation is me, I get taken down.

Is this fair? That my illnesses elicited a chain reaction of devastation in my life and I am the one who has to suck it up and work 50 times harder than the next person to simply survive? I don't think so. I also don't think fair much matters after kindergarten, for it seems to be a state of affairs not often experienced in the grown-up world. Once I got over expecting fairness I started accepting my life. That acceptance led to resistance, which I'll admit got pretty hairy at times, but ultimately led to change. A very painful metamorphosis critical to the forward progress of my life.

Thanks for joining,
Leah