Where Does Your Drama Come From?

I have taken part in my share of drama, theatrics and scandalizing behavior over the years. I understand we all don't always make the best choices for ourselves and often pay steep consequences. But in my late 20's I started getting sick, and my ability to envelope myself in self-induced drama dwindled as real, constant and pervasive chaos in the form of pain and exhaustion consumed me. I laid down the attention-seeking, histrionic-fueled and self-destructive blips on my radar and started making good choices, purely out of necessity. The price I suffered was way too great if I did not. And slowly but surely the friends in my life that fed off that hectic lifestyle fell away, seeking out new folks to bounce on the trampoline of crazy living with. Luckily a few stayed, mostly the solid, progressive, forward-thinking relationships I had forged. Those that could wrap their brain around sickness and limitation and were compassionate and understanding. This was but a small handful. Well six years in, I am glad to report the majority of the life-sucking drama-causing anguish-fueled relationships have fallen away. And for this I am glad. For I just can't dance that tango anymore. My hips can't take it!

I have to admit it is hard for me to sympathetically listen as one cries about a big zit keeping them from partying it up on Friday night. Or another escapade as their already-cheated-on-them boyfriend takes 'em on yet one more round of betrayal. Perhaps needing that new pair of Louboutin's they don't have your size in right now is just not something I can relate to. I understand that problems are relative to the people they are creating a problem for, but if you pile every single stress I have ever had in my entire life on me it still would not be as damaging or incomprehensible as being chronically ill and in pain at all times. Fibromyalgia is so outrageously horrible. And I only ever truly grasp that when the first bad day, on the other side of a few good ones, has done me in. This is perhaps the most filppin' ridiculous illness to try and live with! Flares, insomnia, confusion, senses springing off your body! Pain. Oh my the pain! Stomach problems and hormonal problems and these are but a few of the physical problems, I have not even delved into the emotional. Or practical, like how do you pick up your toddler or maintain a job with any regularity? So no, getting my panties all wound up about darn near four-figure pumps is not something I can much relate to, even if they are really really beautiful.

I believe I can heal from this. I believe that my symptoms can be managed to the point that Fibromyalgia is not center stage in my life. I believe in a better tomorrow for us all...someday. See Fibromyalgia thrives in the face of chaos, confusion, misery, blame, self-doubt and guilt. But it is thwarted by acceptance, pacing, self-assurance, avoiding stress and believe it or not, fighting to squash its ugly head! Do I miss those friends, that drama? Sometimes I do! For it represents a normal long forgotten. But the person Fibromyalgia has forged me into is glad to be done with those emotional ups and downs. My illness gives me plenty of her own. So folks hang in there and be strong! You are seriously sick, so don't take no for an answer. Find a doctor that will help you manage your illness. And figure out how to manage your life so you can create an environment poised for healing and wellness. You must work together as a team to get your symptoms managed.  Keep searching until you feel better.  They may not know cause-and-cure yet but don't let that snatch away your quality of life. Do you see anyone standing around you right now determined to figure your life out, instruct you on how to get better? I know for me the only person that did that was me.

Thanks for joining,

Leah 

The Game Of Guilt

Wish I may, wish I might, I cannot seem to get this guilt thing contained! It got the point that I actually looked at my husband the other day and told him it is getting hard to look at him, I feel so guilty. Guilty for being sick, guilty for the financial devastation my illness has caused us. Guilty for the sacrifices he has made and compromises he has been forced into. Guilty for not keeping a clean house and oh so guilty when he asks me to do laundry so he can have some clean underpants the next day. All because he had the misfortune of marrying a person who looked healthy but has been dishing out one medical crisis after another since before we got hitched. And the worst guilt of all, that he still loves me. For every time we have this conversation he flips the table. And of course I would do everything he has done for me and more if need be, if he were the sick one, without hesitation. But for some reason I cannot grasp why what I have to give is valuable enough to love. And fight for and keep hanging on to. This exploration, meeting of minds as we navigate a way to deal with this guilt, for I am shutting down and closing off with greater frequency, brought up a new angle I had not considered before.

My generation. We were raised by the ERA fore-mothers whom, by the time my parents came of age, were stomping and yelling about equality, rights, freedom from the chains of housewife-dom and motherhood. Choices and opportunities afforded to men were not afforded to women. And yes indeed something needed to be done about it. For how can we call ourselves a free country when half our population had very limited freedom? But by the 1980's equal rights were a mess. Men could not open doors or pull out chairs or gesture a stand as a woman excused herself to the powder room while in a restaurant. There was no separate but equal. There was only equal. Feminism had swallowed up femininity. And the female population lost something important while they gained that sought after equality. The natural balance between men and women. The yin and yang. The way we were created to complement and complete each other, not compete with one another. The belief that a woman could "have it all" morphed into a nightmare for many, as high-profile careers or demanding jobs interfered with motherhood, and TV and video games became the prevalent constant babysitter for my latchkey kid generation.

So this brings me back to how I was able to shed some light on my core beliefs and values and uncover what is feeding this seed of guilt deep within my gut. I never expected to not work. I fantasized that one day I would have children and of course stay home with them until they were off to school. Then I would resume my professional identity and we would all sail into the sunset, happily ever after. But I got sick and knocked that boat clear out of the harbor before it had a chance to set sail. And life has been one big fat struggle to come to terms with the physically limiting and emotionally devastating reality that is living with and managing Fibromyalgia. So I have set out on a search. To seek out a greater understanding of these differences between man and woman. Differences I was not taught to know or respect. Gain some insight into how I can set down this very heavy bag of guilt and embrace the role I am positioned to play. Delight in my husband, compliment him, have pride in being his wife. Take ownership of my home and recognize that what I am doing right this second is indeed work, even if the pay is terrible and I enjoy it quite a bit. 

Thanks for joining,

Leah

The Drugs Are Making Me Fat

As my loyal readers know it is something I am very self-conscious about, obsessed over and embarrassed by. My weight. Ever since I was a pudgy little girl I have struggled with extra pounds. But in the past it was more a matter of calories in vs. calories out. A decision to eat healthy and exercise, and then doing it. When I look back at pictures from age 12 to 22 I do not see a heavy girl, I see a normal one. Since college ended and I domesticated I have been in a consistent yo-yo championship with my weight. Up and down, up and down. There was always a good reason it went up. I was working too much, traveling for my job and always eating out, every meal a quick throw down the throat. The first time I lost a significant amount of weight was for my wedding. We went to Weight Watchers and there was so much fake food involved to keep the points viable it is now what I would consider a poisonous way to eat. But I lost 30 lbs. and looked great on my wedding day! After my honeymoon I did not continue counting my Points and the pounds slowly but steadily packed back on over the years. Then I lost a bunch after my near-death triglycerides-in-the-7,000's pancreas attack. I stopped eating fried, creamy, cheesy and blatantly fattening. I did this for years and was very satisfied. I could eat pretty much anywhere. Even Taco Bell has a soft-tortilla grilled-chicken with tomatoes-and-lettuce taco. I also started exercising, a lot. Along came Yorkie who was a little hellion of a puppy. I would ride my bicycle around the snobby hills of the Peninsula with him chuggin' along right beside me, oblivious to the shouts of cruelty flying from the cars we rode past. He loved it, his little terrier spirit running wild and free. I went to classes at the gym. Weight training endurance, yoga, pilates. All in the same week, every week. I was in great shape and looking better than I ever had. The doctors marveled at me. Most patients don't make true and lasting change to their health after a scare like that, You are so committed and dedicated, on and on. Then one day I got sick and never got better.

I lost function, lost the illusion of a "normal" life. Fibromyalgia & CFS took that "decision" of diet and exercise away from me, for I was in so much pain and so fatigued I could hardly get out of bed in the morning, let alone exercise. I was extremely nauseous from the pain meds and could only stomach comfort food. That one there cost me about 20 lbs. My first nemesis was Lyrica. It helped me in dozens of different ways but once I got up to 450 mg the weight came torpedoing onto my hips and gut at the speed of light, faster than I could blink. And I found myself a whopping 30 more pounds with that one. Then I went off of it and lost about 20 lbs., really feeling I was on my way to slow and progressive weight-loss. The sustainable kind. But along came an intense and solitary tango with Prednisone...my arch nemesis! My hated savior. For it treated the Vasculitis-caused strokes in my brain while sending me into a frenzy of crazy. It was all I could do to keep from bouncing myself off the roof I was so high. And boy did I eat! I would pop truffles into my mouth faster than they could melt. I ate darn near a Costco-size tin of Danish butter cookies. In like 2 weeks. You betcha' I gained those 20 lbs. back, plus a lucky 10 more! 

Part of the weight I gained is my "fault", and partly the side-effects of various medications. But I have discovered blame is a no-win game in life. It does not really matter what put it there, all of it is my responsibility to deal with. But for a long while I was stuck, heavier than I had ever been and doing nothing about it but being absolutely miserable as the clothes I actually fit into dwindled down to stretchy tank tops and yoga pants. And then one day, about a month ago, I became aware of an ugly monster called deconditioning. I saw myself in a mirror wearing a bathing suite in broad daylight and  nearly cried! I noticed how droopy and hangy and jiggly everything was, and I quickly found my elusive friend motivation. My friend and I have since been pushing and pounding and stretching and bounding my body as many days a week as I can possibly stand. And yes, the weight is dropping off. For good this time, for I can't keep doing this up and down to my body. Yo-yo dieting is entirely more damaging than just staying overweight. This is one area where being fat is actually healthier and your body does not give you an A for effort. See when you diet, eat foods in ways that are limiting or restricting and not lifetime sustaining, you lose muscle mass as well. Then when you start eating like a normal person again, for you can only deprive yourself for so long, you gain the weight back. Plus usually a little more. And you don't get that lost muscle mass to come back. So you have actually raised your risk of a cardiac event and body fat percentage, even if you just go back to the exact weight you were before! So once again I have made a decision, and I am happy to report it is working. Can I please just not have any more health set-backs, please?

Thanks for joining,

Leah

How To Be Happy

I actually had my dad buy me a book once with that title. It was a small and whimsical little picture book purchased at the overpriced bookstore in the center where the movie theater is in downtown San Francisco, which of course by now I have long forgotten the name of. I was severely depressed and looking for a way to find my light, my happiness. Woven into a bunch of brightly photo-shopped neon frog and fish pictures, this book used insightful quotes and pondering phrases to inspire uplifting thought. It basically stated happiness is a choice. It is not dependent on outside circumstance. You choose to see the positive and march forward, never looking back or down. Unfortunately that did little to lift my intense, constant and pervasive despair. I needed a better answer than that! For I was slowly losing my grasp and did not know what to do about it. After a youth spent self-medicating my feelings away here I was, 25 years old, newly and happily married, living in the city of my dreams with my career going quite well and so utterly miserable all I could do was mope and cry. I was angry all the time. Angry at work, angry at home. I was angry at the bar downstairs from our house we spent way to much time at and angry with the homeless person at the end of my street. I was just plain angry at being angry! I suppose you could call this my early-life crisis. So many of my friends were having babies during their post-college post-marriage days. Flinging themselves into the frenzy I can only imagine that motherhood is. Or they were strutting their single Sex In The City-selves around town, partying it up and living large. I did not fit into either world.

For I was married yet alone. My husband worked 40+ a week and was pursuing 2 finance undergraduate degrees. He was really really busy. I was making friends from work, but all anyone ever wanted to do was go out drinking, and although this was boring it was indeed an effective way to pass the time and forget about being miserable. And we most certainly were not ready for that baby, for about 100 different reasons. So I existed in this vortex, this void, and would march up and down the hills of North Beach, popping into churches I never went to, pleading and crying to God please please make me not feel so much pain in my heart! Seething as I furiously speed-walked past the happy friends and families shopping and playing and eating on Pier 39. Bitterly I watched the sea lions fight for top-dog alpha in the animal world, beached on algae-covered pilings in the bay. Any semblance of normal happy life devastated me, for it was a sharp reminder that I was anything but normal and happy. Finally I sought out counseling. It helped, substantially. I learned about my neglected inner child and default behaviors and lack of boundaries or setting limits with myself. I learned that my life was my choice. I could make it what it was. Not necessarily easy, a tremendous amount of hard work actually. But ultimately mine to do with what I will.

After 3 years my therapist let me go. Well really she moved away, and I was referred on. And right about then is when I got sick. And I thank God I had obtained, retained and honed the life-skills my therapist had helped me discover and use. I was such a mess as I was folding into the cyclone of Fibromyalgia and CFS. What if I had never seen that woman? What if I had still been horribly depressed? I shudder to imagine what a depressed me would have done with a sick me. But does depression suppress the immune system (I think yes), so we become more susceptible to infection and disease? Did this depression help precipitate the viral infection that gave me CFS and damaged my central nervous system, leaving me with Fibromyalgia after all is said and done? So much research goes into the Fibromyalgia-depression connection. I can tell you I have had depression, and I have Fibromyalgia, and I have been depressed because of Fibromyalgia. They are all 3 very distinct and individual states of being. Yet many of us are put on anti-depressants as the first course of treatment when we fall ill and start seeking out medical answers that no doctor can seem to find.  Told we are depressed, that is all. Hogwash!! Well I for one look forward to getting to know these answers as the dawning of a new day of Fibromyalgia awareness and research is ushered in, spurred by the thousands of patients that want to know too, want to get better. Patients who refuse to shut-up and suffer in silence. Patients that demand a quality of life, and don't stop until they find it. Patients that are on a crusade to change the reality of living with Fibromyalgia...what we call...The Fibromyalgia Crusade!

Thanks for joining,

Leah

Ignoring The Message

I have a serious mental block against checking my messages. It has pissed everyone in my family off at one point in time or another. But I feel the oddest sensation of bliss when my voicemailbox on my cell phone fills up full. And I leave it there for days on end, those that are trying to get a hold of me forced to call multiple times or alternate phone numbers with nowhere left to leave a message. I am not any better with my answering machine at home either. In fact I just cleared 27 new messages last night. Now its not like these are calls from a few days. I am not nearly that popular of a person. It will take a good month to month and a half for this many calls to accumulate. Which lends itself to the question of how someone gets a hold of me in an emergency? My mom has a job where she travels constantly and guilt-teases me that she would be buried in the ground before I even checked my messages to find out she was dead. I suppose she is right. But nothing really seems to dissuade me from this negligent habit.

And as I was trying to explain to my father last night on the phone, who I was talking to because I returned his 2 of the 27 messages, I have a problem with this. It must be a big overgrown thorn-bush of rebel inside me that firmly plants her heals in the ground and refuses to call my voicemail. Never mind the fact that I usually have talked to the lucky empty-voicemail recipients dozens of times between when their message is left and my actual retrieval of it. So its not like anyone in my life is ignored. But the job I had when I got sick required me to be on my cell phone 18 hours a day, at any given time. And if not on it, at least available to be. Messages were something I checked with anxiety, uncertainty of what shoe was dropping next, impending doom clouding my doorstep. It got to the point that I was pretty much fight or flight ready for the majority of my waking hours, and sleep but a brief unrestful respite from the constant and pervasive stress. This was selling lipstick and blush, for crying out loud! It does not get more important than that!

So my sloppy message retrieving habits formed in reaction to this albatross around my neck, and I came to learn how to neglect my voicemail. For checking my messages induced anxiety and anxiety induced stress and I was certainly trying to ignore the ill effects stress had on my existence. But actually not checking my messages was a very hard habit to pick up. I was Pavlov's dog over here, every time a ding would beep from my phone I was on it, problem-solving or soothing my boss's ego or interviewing a new employee. So letting it sit, ignoring it, was actually a huge victory for me. My brain has been programed to be accessible at all times. To learn how to look at the blinking message light and turn away, to see I have 15 unheard voicemails and hang up my cell, those were hard for me. I felt like I was shirking my responsibilities, my obligations. Strangely enough the process of letting voicemail go was extremely important to my acceptance of this illness and the limitations it places on my life. I saw an instant stress-aggressor and set out to learn how to avoid it. So for now I am always just an email or text message away, but if you just leave me a voicemail, you may not hear from me for a while.

Thanks for joining,

Leah

We Made Friends!

This weekend while my husband and I were lying at the pool we met another couple. Around our age, good people and both of them were actually interesting on their own. The dating stage of couple friendships is funny. Its extremely rare to find a good match, all around. Often I find his friends girlfriends are very young and I know he finds my friends boyfriends very dull. Plus with all my ailments I would assume I am an odd person to get to know. So how do I do it? How do I present myself to this woman that has 3 jobs and more energy than the Energizer bunny? My husband and I are home-bodies. Not so much by choice but more a matter of circumstance. I am sick and we are broke. We watch a lot of TV and hang out with our dogs. Maybe venture out to get a yogurt, coffee, the dog park or our all around good time Friday date night at Costco. An afternoon lying at the pool. And that is about as exciting as it gets. But for some reason they were drawn to us and I found myself cautious to reveal too much about my reality, my limited life, my illness.

See the strokes are so much easier to talk about than Fibromyalgia. They are legitimate and understood. Like cancer, when you tell someone they comprehend the severity of the words you are saying. But with Fibromyalgia we are lucky if someone has even heard of it, let alone knows anything about it. Yet it is what rules my life, structures my time, absorbs my existence. For watching this woman bound around with endless energy reminded me how much I have lost. I was like that once upon a time, too. So as the weekend progressed my oddities sprouted bigger and bigger branches. My chemical-fobia organic-sunscreen sun-worshiping don't drink much alcohol because I am on medication-self revealed herself. And I realized I must come off like a total nut! With all my strange ideas about health and wellness, how the refined, processed, carb-heavy food-guide pyramid of the 80's is what has made our country fat, how I scoured the racks in the grocery bakery until I found hamburger buns with no High Fructose Corn Syrup, my known nemesis. Oh and how the now-recommended eating style of 5 small meals a day is just the establishment's scamming way to correct themselves of the debauchery that was that food-guide pyramid, decades later. Yeah, even to myself I sound like a paranoid conspiracy theorist.

And my mind went to an RSS feed my blog is linked to. The emails I get from them are right in that vein. Emails about UFO's or the government injecting monkeys with ebola or nuclear missiles ready to attack from some mid-east country or another. Slowly it dawns on me that I am indeed that paranoid conspiracy theorist! That is probably why they contacted me to link up! Because I am running around shouting to every computer that stumbles on my blog or support site on facebook a very controversial point of view, that Fibromyalgia is a legitimate disease with a specific cause, though it remains yet undiscovered. And enough people agree with me on that fundamental fact and have hit this blog or The Fibromyalgia Crusade or The Fibromyalgia Fun House so that I am garnering a wee bit of attention. Well, good! I am proud to be a paranoid informed conspiracy theorist with evidence to back up my claims that has managed somehow to rid myself of the most debilitating part of this illness. Link me all you want, wherever you want. I am proud of the publicity. I am proud to spread awareness. But when I bring it back home to my personal life it is so complex. How do I say it? How do I tell a new and potential friend I just can't do what everyone else can?

Thanks for joining,

Leah