Happy 35th Birthday To Me

I am turning 35 on Monday. As I sit here and reflect on this odd-numbered yet somehow round marker of my life, I mentally flip through my memories. I have a slight recollection of what it felt like to be that Southern Cali beach blonde baby building sandcastles with a white stripe of zinc over my badly burned nose. I smile when I remember the Slip n' Slide we would hurl ourselves down for hours in the backyard, the summer days of childhood lasting forever. I think of all the church choirs I sung in and school plays I performed in, marking my passage through time. Ballet recitals and flute rehearsals. I feel with strange accuracy the juxtaposition of the two households I was raised in. One was fun and messy and spontaneous. The other safe, ordered and dependable. I think of the girl entering junior high, so incredibly scared and self-conscious, grasping no semblance of an identity of my own. I ponder the pain that must have hit my heart early, for I don't remember it ever not being broken. And my mind wonders of the cold hard world we are all eventually shoved into, and wonder when I was first shoved into mine?

I think of the ballsy teenager that knew it all, rolling my eyes at my parents as I lied to get my way. I recall the high-school senior leaving the safe security of childhood, having to figure out what on earth to do with myself. I fondly remember my dad driving me off to college and setting me up in my first apartment. He put together so much IKEA furniture he still curses that trip to this day! I laugh when I think about the young woman of 20, the college party in full swing. Meeting a man that stuck around long enough to allow my heart to thaw into loving him. It only took him 2 years. What on earth did he see? I think of the blushing bride I was on my wedding day, and how I have grown into a respectable wife.  Of course I have to recall my domino trail of health problems, but you have heard all those before. 

But what presses on me the strongest are two pivotal conversations, when God yelled loud and long to get my attention, and had to fight me pretty hard. I think of the pancreatitis hospitalization in 2007 and how I became aware beyond the shadow of a reasonable doubt I would not live past my 35th birthday if I continued to be the stressed-out super-sick super-freak I had become, shock-waving in pain and popping Percocet to get out of bed in the morning. I knew something had to change. For I wanted life! And then the zaps to my brain last year. And again my life was in question. And again I knew. Stop. Get a grip. And finally, for your last warning, CHANGE THE WAY YOU LIVE YOUR LIFE! And I did. And here I sit 100x healthier than I was last year at this time, with my umpteenth and final major health crisis behind me. So yeah, I sit and reflect, and think of the girl to adolescent to woman that I have become. And I thank God my growth is not done. So here I am, I am 35! And I think I just now hear the starting gun!

Thanks for joining,

Leah

*In observance of this momentous holiday of all holidays, the next new blog will publish Tuesday, August 2nd.

Thank You Prednisone

I always thought steroids were bad. Of course the kind that muscle-heads juice with, but the kind doctors prescribe as well. Through stories gathered from friends and family (long history of asthmatics), I had been taught to warily avoid them. Weight gain, facial hair, tantrums in public. Oh yeah, I had heard plenty of stories, with enough bad details, that I actually felt justified in challenging any doctor trying to get them into me. So justified that last July 28th, on the 5th day of having what can only be described as the worst headache in the entire universe, ever, I scoffed at the ER doctor when he informed me the spinal tap he was about to perform would inject a small amount of steroid into my system. My husband was sitting right next to me and looked directly at the doctor, giving his verbal permission and overriding me right in front of me! I looked up at both men while lying drugged up on that gurney and knew there was no getting out if it. Fine. Just a little bit of steroids for the spinal tap. Which kinda freaked me out in and of itself, but I just did what I always have when faced with ER's and hospitalizations. Ignored the gritty stuff. Pulled out my master compartmentalization technique. Its much easier to do while hooked up to a push button IV of very strong narcotics.

I honestly thought I was going to have 1 of 2 outcomes during the two intensive days of extremely invasive testing. Either I was going to have brain surgery or leave there with a death sentence. Tumors or an aneurysm, something along those lines. I decided if I was lucky enough to go the brain surgery route I was going to buy a VERY expensive wig that was my dream-hair, for surely at least half my head would be shaved. But really all I could do was pray. I was so unbelievably scared. I had to put my faith in the fact that I was not the master controller of my life, and that my purpose here on earth just may be done. I felt peace for myself, confident for my spirit in the afterlife. But looking at my husband and mother's concerned and attentive faces 'round-the-clock, my heart ached for their loss. For their love was shining all around them, so bright. And I knew I played such a large part in both of their lives. It was heartbreaking to imagine their lives without me in it.

So imagine my surprise when my world-class neurologist came into my hospital room, pulled out a chair right in front of my bed and sat down. He told me I had a diagnosis.  I survived 2 strokes caused by RCVS, a subset of Vasculitis, and I was going to be fine! It was reversible with treatment; steroids and calcium channel blockers. I was never so overjoyed to be given anything in my life as I was that Prednisone! I was quickly moved out of ICU to gen-pop and finally sent home, high as a kite from evading death, and what I now know quite personally as the drug from hell. I have bitched in many a blog about Prednisone and all the wacky and terrible things it inflicted on me. But I am going to tell you what Prednisone did do for me. It gave me guts. It gave me energy. My need to sleep any more than 7 hours a night was gone. I didn't have Fibromyalgia pain anymore! I felt incredible! My nails were long and strong for the first time in my life. Exercise was a breeze, I was darn near a contortionist! I was en fuego and I could not sit down! So I published this blog and started all sorts of awareness efforts in the name of Fibromyalgia. My purpose here on earth certainly NOT done. Then when I came off that steroid the sheer burden of responsibility I found myself in kicked my ass. And now I have balanced out and am quite pleased with what my crazy-self started. So no, I would not trade Fibro for Prednisone. Give me an illness to manage any day over a psychopathic drug that turns you into a crazy-speedy-freaky hairy fat person! But it saved my life, in more ways than one, and for that I will always be grateful.

Thanks for joining,

Leah

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