Supplements

When one's health falters, and the doctor their insurance plan will pay for can find nothing wrong with them, many patients seek alternative treatments in the hope of finding something, anything, that will take their ailments away. There is no shortage of snake oil out there, plenty of people selling the "cure" to Fibromyalgia. But they have only made us doubtful and bitter. People aggressively insisting that if you don't try their product you don't want to get better. It is extremely unpleasant to deal with this. There are many other options folks may try. Vitamins and supplements, hormones and injections, to name a few. Acupuncture, chiropractic, massage, really too many to list. When I became disabled from CFS and Fibromyalgia I searched for a support group, a network or association, anyone that had been through this and knew what on earth to do! I talked to one woman who used to run a CFS support group and she described her symptoms to me. My first thought was OhmyGod another person on this planet knows what I am feeling! But as she went on and I went through my list of questions I realized that over the last 15 years she had kinda just let this overtake her life.

I asked her about The Fibro & Fatigue Centers my internet research kept turning up. She brushed it off, saying it was just a bunch of supplements and costs a lot of money. As I drilled her for answers, something to do to start to get better, anything to change the hell I was imprisoned in, she fell very short. For she was sitting and waiting for modern medicine to fix her. So I went to the specialty clinic, and oh my soul, supplements galore! So many supplements! And this one can be taken with food but this one on an empty stomach and this one 2 hours before you can eat for the day and that other one that was specifically between lunch and dinner and this one over here you have to take, then eat 30 exact minutes later...oh it was maddening! But I did that for about 6 months, putting myself into significant debt as I actually started to feel better enough to return to my retail job. Then we did the anti-virals and anti-fungals and anti-biotics and I really started to feel better. And ever since then I have been a complete freak about taking my supplements. Religious, almost to a fault.

They are a lot less complicated and significantly less expensive now than they were back in the early days. My immune system is properly supported with vitamins, minerals, amino acids and a minimum of herbs. But I still spend enough on them that when money gets really tight sometimes I have to lapse. And that happened a few weeks back. I went without my supplements for a good 2 weeks and was in  horrible awful misery. I hurt. I was angry and emotional. I did not sleep well. Did I mention I hurt? Exercising was grueling and that EBV, oh it just waits for a break in the protective barrier to sneak up on me! Achey, sore throat, swollen glands, sinus pressure, headache, you know, the good ol' fashioned afternoon flu! Cold-sores all over my mouth, thwarted by the anti-viral I had to go on. But payday gratefully came and I placed my order and once I was back on them for about a week I felt better again. Much better. So I guess I am not wasting that money. I sure wish I could spend it on a pedicure or massage, or even an overdue bill for crying out loud! But as we all know way too well, you really can't put a price tag on health.

Thanks for joining,

Leah

The Price Of Technology

Apologies for not posting on Thursday. Blogspot was misbehaving...

Does anyone here remember dial-up internet? And how slowly the information would load? Yet how amazingly fast it was compared to looking in a dictionary or encyclopedia, driving to the library or a store. But once this high-speed thing came out, dial-up paled in comparison. And slowly but surely, one by one, most have transitioned over to fast internet access. I am sure there are still a few Earthlink subscribers out there that haven't the want or need to upgrade. Slowly watching their web clicks upload, their hair inching out of their scalp at the same speed. And it popped into my head that we, my Fibro friends, are dial-up in today's high-speed world. We still try with all our might to get the job done. Sure its a little slower, okay a lot. And quite a bit of chaos and disorganization, no seamless transitions from activity to activity. We need to rest before we launch the next charge! There may be painful "half-days" when we are between loading large tasks like a highly pixelated picture. And you have to sit there and watch our incompleteness drive us crazy to distraction. There is a lot of waiting around for us to be ready. Asking us to do something does not mean we start it the second we are asked. It means it goes in the circular file that exists above all our heads, a forever to-do list rotating and intermittently remembered, loading just as slow as the third frustrated click of the "back" button does in that dial-up world.

I remember a time before technology ruled our lives. When the only phone number a teenager had was their home phone number. When you had to make plans before you left the house, and actually seek out the people you are meeting at a specific destination. There was no "We are in front of the Gap" quick text on the cell phone to guide you. Getting directions, remembering where you parked your car? There weren't any GPS navigation guides or key fobs stimulating a beeping horn with each press, guiding you to your automobile as a dolphin glides through the midnight waters, sonar detection leading the way. Remember when every person you knew did not have immediate access to you at any given time? Then we got cell phones and ended that. How about when a vacation from work actually consisted of a vacation? Not a mandatory morning check of your email to avoid imminent disaster upon your return from a well deserved rest. And then our cell phones started getting our email. And social networking "apps". And every single person we knew, be it real life or virtual, could now get in touch with us at any given time, day or night, anywhere in the world. And they actually expect this, too!

There are many advantages we are lucky enough to experience living in the eye of this technological revolution. Hell, I could not even write this blog without Google, many many searches discovering information, confirming or correcting it so I don't come off like a bumbling idiot with no knowledge of the world at large (I hope). But we have given up a lot as well. The lines between work and personal time are horribly blurred. Privacy, really, need I even go there? Instant accessibility makes the rest of the world, the natural order of things, unpleasant and slow. Our society has become impatient and terse, always on the go, fast fast fast. I recall my "career" days and how I would be walking from place to place, fuming because I did not have time to be walking! I needed to be THERE! NOW! There are so many patients with Fibromyalgia, and just in living with this illness we have touched the lives of a great many others. And given them a taste of that slowed down lifestyle long forgotten. It is annoying and inconvenient. We are judged and left out, confronted for our "laziness" and whispered about behind our backs. So please my dear friends, remember, you are confined in a body that is sick. But you still have everything you ever did to offer. We are not going the way of the dinosaur or dial-up internet. We are actually making the world slow down and examine its flaws, the flaws that knocked us flat on our asses and made us so sick. Oh yes, we still have plenty to offer. It just may come a whole lot slower, which I actually don't think is the most terrible thing in the world.

Thanks for joining,

Leah

Yorkie Bear

Today is one of those days where I just can't get it together. I am tired and scattered, sore and emotional. And I just had a 30 minute conversation with my dog. Now Yorkie is much smarter than your average bear, and dramatic and manipulative to boot. He sat here next to me and whined all morning until I got up and asked him what he wanted. He led me out of the office, through the living room and to the dining room table. He proceeded to look at the table, look at me. Look at the table, look at me, with quick jerks of his head. So what do I do? I concede! I take every item off the dining room table one by one and open each bag, ruffle up each item of clothing for him to sniff, only giving into this because he is always right. He will sit there and pester you one day, totally out of the blue, about a tiny little ball that has rolled under the sofa. It will have been there for weeks but when he notices it, he has to have it. And I am always the one to get it for him. After hours of listening to him whine under his breath, giving me innocent looks when I tell him to knock it off, I will get up and let him lead me where his treasure awaits. Yorkie is so skilled at this fine art of detection and will hone in on a bag of training treats long forgotten about in a jacket pocket. And pester the crap out of me until I go to the closet, search each pocket and finally find the bag of long-forgotten morsels. Then I have to tell him loudly and firmly "NO", because they have gone bad. He will walk off and plop down with a sigh, either his back to me or gazing up at me through the most pathetic puppy dog eyes I have ever seen. I am not that mean of a mommy and usually he will get a fresh and wont-break-the-dogs-teeth treat shortly thereafter. I kid you not every time he does this there is some long forgotten treasure he turns up. Is it possible that not only my smart-phone, but my dog as well, are both smarter than me?

But earlier in the morning, right when we first woke up, I had an emotional encounter. And I cried. I wiped my tears from my eyes to see Yorkie standing below me, ears back, tale quivering and low, those wide wet eyes letting me know he is there to give me love. See this little dog is half the reason I fought so hard to get my life back. The other half was my husband. But Yorkie was there for me in a way far beyond what I ever imagined a dog was capable of. He would let me hold him as I rocked back and forth on the floor and cried, ever incapable of comprehending what the hell had happened to my life? He was there as a little puppy, sleeping all day with me, his terrier spirit not nearly as strong as his loyalty. He was my buddy, my pal, the guy who I kicked it with from morning till night. I had to force myself to walk down 3 flights of stairs to take him out on days that would have strung into weeks I was too sick to leave my house. I set my goals of walking around the complex to around the block to around the neighborhood, for his benefit. Eventually we could take weekly trips downtown, walking 5 blocks to go to the bank, library and post office. He got good at jumping into his bag and just lying there, undetected, inside the stuffy official buildings. Because he knew a trip to the yuppie puppy shop was on the way home, and he would be getting a big tasty treat.

So this leads me back to the dining room table contents, the evidence of a weekend of not straightening up spread out on the floor. And as I open each bag he duly sniffs, then backs up, waiting for the next one. Sniffs and backs up. Until I get to the bag we put our stuff in for Friday night scotch and cigar at the hot tub (yes it was not over 100 degrees so I had to go in the hot tub instead of the pool). His little tale starts quivering rattlesnake fast and he gets really excited, emphatically moving the bag contents aside with his nose as he burrows, indulging the reason for his pedigree. And buried down way at the bottom under all the other junk is the tiny remnants of a bully stick the dogs get every Friday night down at the hot tub. I guess he had not finished his, or Porkie had not finished hers, and we grabbed it as we were gathering our stuff and forgot about it. So yes, this is why when he actually pesters me enough to get up and get something for him, I know there is something hidden. I just sometimes have to work really hard to find it.

Thanks for joining,

Leah

Saturday Night Lights

On Saturday night we went to a friend's birthday party. My friend, lets call her Lisa, is one of the very few friends I have made living in Arizona. We worked in the same mall, then she was promoted to a new location and I started freelancing. So our once or twice a month lunch dates dwindled off. We hung out as couples barely a handful of times, then I went through my getting-off-Cymbalta drama and she had a baby and our friendship just kinda went dormant. Of course Miss Prednisone over here picked up communication with her after the strokes, and we have been hit or miss ever since. My attendance record at actually keeping our dates extremely sporadic. So when she text me a few weeks ago about her birthday this last Saturday night I accepted, really really wanting to have a social life again!  But after staying up till 3am Friday night and running errands all day Saturday, the last thing I wanted to do at 10pm was get it together and go to a bass-booty-bumpin' nightclub. But I did and even wore heels! So off we went, being so old and out of touch we were there before they even started charging a cover. 

Lisa looks great, very happy, lots of friends around. And she is really thrilled we came. And I am glad we did too, for she is a good friend that for some reason still wants to be friends with a flaky Fibrate. Why? Who knows. The DJ is really good, but so flippin' loud you can't hear anyone unless their mouth is shouting 1" from your ear. And there is a crazy light show pulsing to the bounce of each beat. You can't really talk so we sit and slowly watch the dance floor fill up. The eye candy, oh, it was delicious! But after a while the whole sensory-overload starts piercing my brain, causing fried-out parts of my cerebral cortex to thump awake. I started to worry about having another stroke. Not like there was any correlation, but if I felt concerned it was SO not worth the risk. I tell my husband I need to go, the music is too loud and the lights too intense. Ever attentive and concerned, he had us up and out of there faster than the words were out of my mouth. We depart to see a long line waiting to get in. I really wondered if I looked old? Kinda old or really old, as I recalled the clubbing days of my early 20's, thanking the good Lord in heaven those days are far behind me. 

My husband had 2 drinks, I had none, so I drive home. We get into the car. My brain is on such sensory overload and the streets are wild with people and cars everywhere. So what does my husband do???? Turns on the radio, says "Oh wow, this is the song they were just playing in there!" and pumps up the volume! I break in the middle of the road. I did not mean to but my brain stopped functioning. He starts screaming at me to drive and I barely realize what is going on until I slam the off button on the stereo and can finally determine there are no cars in front of me and the light is green. Thank God there were no cars behind me, either. So I get ragingly pissed off at him, feeling like I am dealing with an inconsiderate and selfish 12 year old. I could not believe how blatantly insane it was that he did that, put me right back in an environment that he had just so gallantly escorted me out of because of sensory overload. He thinks there is no inevitable or obvious connection here. I get all bent out of shape and bitchy and uptight on the uneventful continuation of our ride home. But we have been committed to really communicating and growing our relationship, not settling into the mid-marriage bitterness that can swallow the entire union whole. So we talk it out, get home, put our pajamas on and sink gratefully into the sofa, snuggling in the quiet calm comfort of home.

Thanks for joining,

Leah

How Am I Supposed To Exercise When It Hurts To Move

Yesterday my step-mom forwarded me an article about a woman with Fibromyalgia who walks half-marathons!* She has found her salvation from the pain and anguish this illness causes in walking. The warming of her muscles and loosening of her joints as she marches through the pain eventually calms the pain. As someone who has recently embarked on an exercise program I can tell you two things. This walking half-marathons thing actually can be done (not that I have done it or anything) and it is a very long and slow process to re-introduce exercise to your pain filled Fibro body. It takes years to get to the point that your pain is managed with exercise and little else. And as we agreed way back in the beginning of this whole blog and Fibromyalgia Crusade, not every patient will have this experience because Fibro is not a one-size-fits-all illness. It has different etiologies and outcomes depending on each individual patient, their co-mingling conditions and the actual root cause of their illness. Also, and please hear me here, if you also have Chronic Fatigue Syndrome, the sheer exhaustion from walking up a flight of stairs alone will impede you from cardiovascular exercise. At least it did me, for many years.

While it is great to hear about a Fibro sister that has found a way to manage her pain in a positive and healthy way, it also puts an immense amount of pressure on the rest of us. How many times have we been shushed out the door of our doctor's office, clutching a prescription for a drug that mysteriously "calms" that overactive central nervous system and a mandate to exercise more? A fellow Fibro-advocate sister was just on Dr. Oz (click here for the video), and asked him for his advice in managing Fibromyalgia in a natural way. His knowledge of Fibro and how it affects the body was pretty right on, I was quite pleased to see. He stated the #1 most important thing for us to do is keep moving. The body needs energy spent to regenerate itself. Well that is fine and dandy Dr. Oz, but you try moving a body throbbing in pain and wracked by fatigue, magnets sucking you to the ground, the sheer act of walking across the living room a tremendous feat. It is quite simply harder than hard!

Doctors are so much nicer to folks they can fix. They can't fix us yet, so it becomes our responsibility to manage it. I personally believe what we are dealing with here is an environmental illness of epic proportion. It is a reaction to the unhealthy world we live in. Stress, chemicals, pollutants, processed and manufactured food, big business, damaged DNA, divorces, illnesses, accidents, corporate responsibilities, injuries, latchkey kids...oh the list goes on and on. Did I mention stress? All that we have gained from our agricultural and industrial and counter-cultural and technological revolutions. Compile all this together and figure the majority of us have been active participants in this world, completely oblivious to what we were morphing into biologically. Trading convenience for wisdom, now for later. Fibromyalgia is hitting the world in epic numbers. There is no race or socioeconomic status or religion or political party or specific culture predisposed towards this illness. There is no answer to "Why me?". I am sure Fibro itself has been around for hundreds of years, at least. But over the last few decades the numbers have skyrocketed! For whatever reason, at this point in the perfect storm of modern society, so many are receiving this diagnosis. The central nervous system of millions of people becomes stamped with catastrophe, causing damage, permanently and forever altered. Leaving the body that holds that damaged CNS with awful pain and debilitating fatigue, often accompanied by horrible insomnia. So take heart, my friends. There is another side to Fibromyalgia. One where you can exercise and live your life again. When I was at my lowest low doctor after doctor kept telling me to exercise, and I thought they were out of their minds. And to a degree, they were. But once I got treatment for my CFS, slept for like 5 years, changed my diet, stress levels, lifestyle and most important of all, my attitude, my life improved drastically. See folks if you believe it, it can be done.

Thanks for joining,

Leah

*realage.com "Health Benefits Of Exercise: I Walked A Half-Marathon-- With Fibromyalgia!"

Its Off To Work We Go

You may not know it yet, but you have a very important job to do. Now you may already have a job outside the home, but this one you will have to do on top of that one. If you are a stay-at-home parent, you still have work to do. If you are disabled and unable to work, you still have to get up in the morning and do this job. If your spouse makes enough money to support you, yup, you got it...you still have to go to work each day. In fact every morning of every day of your life, the second your eyes pop open, this job is your first priority. Oh, and it is not glamorous work. Its a hard job, in fact. Possibly the hardest one you will ever have. It comes with no training manual or DVD. It comes with hardly any physical or emotional or financial or medical support. Yes, I am not gonna lie, you are pretty much expected to pull out all the information you need to do this job from your ass, or the internet, whichever is easier for you. 

This is work you never get to punch out from, you never get a lunch break at. You are always on the clock. You don't get to take a weekend or holiday off. In fact for all this work you don't even get a paycheck! Your family does not like this job, for it absorbs so much of your life. Your friends hate this job. It has taken you away from them. Your kids don't understand your work, or why you are so different than you used to be. Often times your doctor does not even believe you enough to tell you there is a job to be done! And that it must be done by you. But despite all these drawbacks it is perhaps the most important work you have in your life. For if you don't do this job you will not be able to have a life, or do any of the others required of you. The ones you want to do. Now some try to ignore this job they have been given that they never asked for and certainly never wanted. But the necessity does not go away. Those that ignore it the most are often the ones it hits the hardest. 

So what is this extremely undesirable job you have NOT signed up for, but is required if you are to survive? It is managing your chronic illness. When one is unfortunate enough to be ill there are 2 types of diagnosis, terminal and not-terminal. I will add a 3rd on, actually. Not immediately terminal. Types 2 & 3 are what require you to do this job. And if you look at the alternative, it really is the better choice. Not like anyone had any in the matter. But you will still be traipsing around on this planet for a long time despite this chronic illness, and managing it and getting it under your control is the only way to live a life. When a person is diagnosed with the type 1 diagnosis they will most hopefully be in a position put up a big strong fight and use anything and everything at their disposal to win, stamp it out, erase it. Some are successful and sadly some are not. But why would it be any different for types 2 & 3? Why because we are given these diagnosis do we think we don't have to fight too? And use everything and anything at our disposal to gain the upper hand? Is this something in life you just lay down and take? Would you if it were a terminal diagnosis? As a doctor once told me, "You can get to livin', or you can get to dyin', but you can't do both."

Thanks for joining,

Leah