Wednesday, March 31, 2010

Background: The Light At The End Of The Tunnel

A few days before the 6th of September in 2006 I had seen a psychiatrist. I could tell things were unraveling and felt I needed some help stabilizing. The morning of the 7th I had my husband stay home with me from work because I was still so fragile emotionally that I did not trust myself to be left alone. I did not have a plan for suicide, but a deep and intense desire to simply not exist anymore. I called my doctor and sobbed my way through a phone conversation, desperately pleading for her to support a disability claim to take time off work, paid for by the state of California. Thankfully, she did. However, there was quite a language barrier (not to mention I was a complete basket case) and she thought I needed time off work because I was depressed, not that I was depressed and very emotionally unstable because I had become so sick just trying to meet my basic obligations that now I could no longer work. I called the psychiatrist and she prescribed Neurontin to help my extreme anxiety. I was still on the anti-depressant, Welbutrin XL, from the previous doctor.

I asked my mother to come stay with me so my husband could go to work, and could barely drive to the airport to pick her up. I was very scared behind the wheel, thinking everyone was just about to swerve into my lane and I was constantly about to crash. My mom was great. She hung out with me and cleaned and cooked for me. She entertained me and tried to cheer me up. After a few days she went back to her life, and I set out trying to find how to get better from this. I was out of work and barely able to do anything. If I took a shower I had to sit and rest for 30 minutes before I could put lotion on. If I made the bed I had to rest for 45 minutes. I had so many symptoms it was unreal. Cognitive, abdominal, migraines, pain everywhere. I could not use my right hand or arm due to a repetitive use injury that now made the pain unbearable. We had to join Nutri-System because I could not cook, emptying the dishwasher was an afternoon event and I don't even want to think about what it took to go to the grocery store. I was at about 10% of a person. When I come across my writings from then I will post them. It was sad and pitiful.

There was really no treatment. Nothing FDA approved or effective in modern medicine. I saw a chiropractor that recommended a book called From Fatigue to Fantastic , written by a doctor that had Chronic Fatigue Syndrome and Fibromyalgia. He had access to all sorts of knowledge and testing methods and medications and was able to put all of it together to get himself better! He also embraced some holistic approaches to healing. But I did not know where to find a doctor like this, I did not know anything about this stuff. The internet was infuriating. All I would come across were people that were older (50's and up) when they got this and they were always financially stable and it took them like 5 years of laying around and not doing jack-shit to get better. Well I was not and did not have time like that! We were young and just starting out. My husband and I had never even had a full-time professional job at the same time! I moped around crying and complaining for the next month. I was feeling so sorry for myself. I was confused as to what the hell had happened and what to do about it. Although I was slowly gaining mental stability I was not improving physically. I was actually getting sicker and sicker. I believe I hit physical bottom about a month after the emotional break. And then my doctor was difficult about extending my disability claim. Here I could hardly leave my house and she was still thinking this was about being depressed! I knew I had to figure out how to get better because there was no other choice. This was not a life!

I remember shuffling down the 3 flights of stairs to take the puppy out, chanting to myself I must get better!, I must get better! I decided to take a leap and fly to Las Vegas to visit the Fibro & Fatigue Center, a specialty clinic ran by a medical doctor that also embraced holistic methodology as well. I had family in Vegas to stay with and my mother met me just off the airplane with a wheelchair (I could barely walk) and attended the appointment with me. The doctor explained why I was sick. It was complex and strange...a bunch of strange disorders lying just under the surface of normal. It was a domino effect of loss of function starting with a trigger event (pancreatitis?) and an undiscovered sleep disorder. This in turn created a suppressed immune system and I was now host to a multitude of ailments because my body did not have immunity to come to its own defense (EBV, CMV, HHV-6, but this comes later). It was intense, expensive and very complex. I gave them 31 vials of blood, they gave me bags full of supplements and prescriptions for bio-identical thyroid and testosterone. I gave them $800 and they gave me a follow-up appointment in a month. My mother and I left in shocked bewilderment. But shortly after arriving home and beginning the regiment I began to feel a bit better.

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Unhappily Ever After

I just spent the last 2 hours trying to get my laptop on the internet and all I had to do was turn it on after I turned on the desktop with the router. Oh that was really flippin' annoying! Now I have totally lost my flow and focus and I was actually doing a bit better this morning...

I figure if I make a few good choices, steps in the right direction each day, then that is all I can expect from myself. Rome was not built in a day, right? I took the dog out right after I made my coffee and put a load of laundry in. I ate breakfast before my head was dizzy and my mouth was watering, and then the damn computer sucked up the rest of my morning and totally threw me off my game. I have a test in Spanish manana and a dentist appointment this afternoon. I have a slew of bills to pay and it is very confusing switching to the new bank with being so close to broke anyway. I am also dealing with new car & renters insurance that is serving to be another thorn in my side.

Last night while I was falling asleep I allowed my mind to wander. I imagined the life I am believing will make me happy, the one that we are working so hard to achieve. It was a life of surface, fluff and bubble-gum. However, my mind could not grasp that life with my husband. There is so much unhappiness and sacrifice and a huge block of emotion that has already scarred our union and I could not get past that. This was an existence that was not battle weary, full of pain and bruised and beaten for the wear. So I guess this was my life sin my husband, more like if I had a different life entirely. I was married to an older man who was divorced or widowed. He had teenage that kids I was helping to raise (even in my fantasy I still can't get into that childbirth thing!). We had money and nice things and health and looked good. We went to nice places and had normal problems like he works too much and the kids are rebelling. We had a life, a system that worked for us. But deep down inside it was hollow. It was empty. It was fake and shallow and unfulfilling. It was devoid of passion or enraptured meaning. It was an exercise of walking through the motions, doing what should, or looked good. A facade of appearances. But it contained all that I beat myself up on a daily basis for not doing.

And I realized how much I love my husband. That you could take all the money or things or achievements away and that would still not tear me away from him. He is my life-force. But I worry he is fading. I worry he is becoming such an angry and bitter and unhappy person that he is going to make himself very sick or alter his ability to be happy forever. I fear that what I have forced him to go through has broken his spirit and he will forever exist as a shadow of what he once wanted to become. I fear for our future and our life together because he no longer believes in it. This is a painful truth. I want to help him, but like when I was in the depths of despair over Fibromyalgia, this is his personal journey. He has to come to terms with the reality of his life and stop getting so mad about it. He has to see the light at the end of the tunnel and start marching toward it. Or is that what we will never become? Will we forever exist in pathetic unfulfillment or will we rise up past this [very big] challenge and be all that we can be?

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Tuesday, March 30, 2010

Background: The Emotional Breakdown

The cycle finally broke on September 6, 2006. The day I hit bottom, the day I had a total emotional breakdown. The previous day I was a complete mess, unable to cope or function, remember what I was doing (like where I was going while driving), stay focused on an activity (like remembering what to buy at the grocery store) or complete a task (like leaving the grocery store without any food). Sadly I am not exaggerating. On the 6th I went to work and the only way I made it through the day was in an extreme manic overdrive. A customer even offered this cosmetics sales girl a job at her law firm because I was so over-energized and hyper! I felt like I was running to myself from behind, knowing that if I was not racing, I was collapsing. So when I got on the train after work during the 6 o'clock rush-hour commute, I fell apart. I jammed my sunglasses on my face and sobbed for an hour. I could not stop.

I was mourning. The life I almost had. I knew I was just not strong enough, I simply could not go on. I saw no end in sight, no relief, and I was spent. We could not afford to live on my husbands income alone and the effects of my health, through lost wages and heavy medical bills (remember that diagnosis of exclusion?), were already beginning to swallow us financially. I got home and spent the rest of the evening fluctuating between wailing and manic pacing. I was trying to convince my husband to move on, drop me, and go live his life. I knew I was going to ruin it and loved him too much to let that happen. This was a very painful evening for both of us. I was more than a little mentally off balance and in a very desperate state and he had no clue what to do with me. In the back of my head I was looking at my baby Yorkie puppy and the man I love more than anything in the world, knowing that this was wrong. I had made a commitment to them and I had to see it through. And there is nothing that pisses me off more than people that don't see their commitments through! I just did not know how, let alone if, that was even possible.

I thank God every day for the faithful steadfastness of the man I married. He is still the man of my dreams to this day and is a true angel in hunky-human-masculine form. He is the reason I am here, both physically and mentally, and it is through his strength I was able to find my own and fight to overcome the crippling effects of this disease. I am all that I am because of the grace of the almighty Lord, and Their foresight to bless me with a man greater than I ever imagined I was worthy of.

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Sunday, March 28, 2010

New Week, New Me

I have some major goals to focus on. Some major areas of my life need discipline and attention and accomplishment. I absolutely must exercise daily and must get to bed earlier. I am all ready to make up an Excel checklist with the minimum points I should hit every day. Stop making excuses or being lazy! I feel so much better when I do a few certain things, things that are non-negotiable when I have to go to work or school yet seem to elude me when I don't. Maybe its the thought of putting makeup on to go nowhere, but I think its really much deeper than that. I still exist with a constant need for indulgence and rest. If I have no commitment to the outside world then I don't keep the commitments I have made to myself. It is pathetic, given where I am and how far I have come. When I was on my way down the rabbit hole of health it was one thing, but now that I am darn near done climbing my way out of the top of that hole it is something else entirely.

I have this fantasy image of myself as someone that is overwhelmingly happy, leaping out of bed in the morning to gleefully lather myself to cleanliness in the shower, and then enthusiastically racing out the door to go discover the day with my dog. Upon our breathless and rejuvenated return I bound happily on the trampoline to the first half of Chelsea Lately, whereupon I pliably practice Namaste Yoga for 20 minutes, stretching every kink and knot and radiating source of pain out of my body. At this point I fill my tummy with toasty oatmeal, nutrient rich juice and lots o' vitamins! Then I take the time to beautify myself and blow, primp, paint, powder and press myself into attractiveness. And now it is only 10 o'clock in the morning. The rest of the day exists in a series of rotating housewife accomplishments. Blogging, bill paying, homework and studying. Clothes washing, dinner prepping, errand running and dish doing. Taking the time to sun myself, procure my mani/pedi, keep my hair trimmed, roots blonde and my closet full. Keeping up the appearance of success and productivity.

Whatever I may do, there is no sitting on the sofa all day. No seasons past of Friday Night Lights streaming from Neflix to my blu-ray player. No eating between meals or skipping lunch entirely. There is just steady, pleasant progress marching me toward a day of satisfying accomplishment. There is no lying in bed until noon studying Spanish, ignoring my "most important meal of the day" until I am headached and faint. There is no begrudgingly brisk walk around the complex so the poor dog can call to nature. Oh you get my life is steady and my dreams. As I write this I feel such a draw toward my dream life and repulsion to my real one, and it all goes back to discipline. Motivation waxes and wanes but it is in the art of following self-discipline that the deepest dreams are accomplished.

I feel I am holding myself back with my own laziness. I am scattered and disorganized and unfocused and quite simply, going somewhere very slowly. I strive to march there quickly with purpose and determination. But what happens when I set that alarm for 7:30 every morning, and clean this house until it is organized and gleaming. And the bills are up to date and the dog is groomed...I start to derail. I start to feel an intense need to indulge myself. To eat and smoke. To watch movies and television and rummage in the fridge. To obsessively edit my blogs all day, drooling on myself as I sit slumped over the computer. The rebel in me comes rearing her round cherub-head and kicks me off the path of productivity and pulls me onto one of excess. Once she comes out, she usually wreaks quite a bit of havoc until she is satiated. So off the "good" train I go until another stirring of dissatisfaction rises in me a commitment to discipline. This is the pattern of my life. Doing just enough to get by. Wow, that awareness just formulated itself in my head for the first time, and it is truly and deeply resonating. So now the question remains, will I continue to come up with excuses for my laziness, reasons as to why it is reasonable to flounder through life? Or will I come up with 1 consistent reason to avoid the excuses and push past this phase of oppressive habit? I need a goal that overrides how I "feel" on any given day, that gets me up from the couch or off the computer and makes me accomplish something tangible. Something real. Only time will tell...

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Friday, March 26, 2010

Hoy Es El Cumpleano De Mi Perro

Today the Yorkie turns 5! He is such an awesome dog. So smart, so funny. I got him right as I started getting sick with what they now call Fibromyalgia. He was such a wild little thing and I had to leave my husband (who had never had a dog before in his life!) and puppy together for 2 whole days while I flew back to Grandpa's funeral. I came home and my husband had wild eyes. The dog was peeing all over the place. He was so hyper and spastic and chewing everything. Poor guy, he was so in over his head (the husband, not the dog!). He just looked at me with desperate, pleading eyes, eyes that screamed the words, "HELP ME...". So when I returned home we resumed unpacking and putting our new place together whilst trying to train the puppy. I knew little more than he did, having dogs in my childhood but my parents doing all the "work". And work it was! After a few weeks (and some pretty practical deliberation with myself) I looked at my husband and said, "Honey, I don't really know if I want to have any kids..."

So we settle into life on The Peninsula and work relentlessly to teach the puppy English and manners, in no specific order. At around 2 1/2 years of age this AMAZING dog emerges and has now become the 2nd love of my life. He is more person-like than dog-like to me. He is my child. He was with me during the worst of my illness. He was there when I would sob wildly on the floor, rocking my body back and forth, so angry and frustrated or sad and confused and feeling completely helpless about what was happening to me, and he would lick my tears. He would sleep all day with me even though he had tons of energy and would bounce around endlessly if given the chance. He was there with a wagging tail and pinned back ears when I would come home from my computer class, so happy to see me even though I had been gone for less than 2 hours. He was the only living thing with a heartbeat with me for 12 hours a day when I was on disability. Struggling up and down three flights of stairs to take him to the bathroom was the only thing I would leave my house for during the worst of it, unable to even shuffle around the block.

It is funny the relationship we have. He is enamored with his father. Everything my husband does is met with an eager eye and accepting wag. But he is very dependent on me, very protective and a bit bratty. He listens, but sometimes I have to really make him. He is my pal. And now that I am home with him so much and he is a bit older and is not really active with other dogs at the park, we are at the point in life where planning for kid #2 is inevitable. It's just expensive and so much work and having 2 dogs instead of 1 is a big commitment, especially while still in an apartment. So a little angel will surely be joining us in the year to come. Stay tuned. It's going to be a wild ride.

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Thursday, March 25, 2010

Don't Choke!

OHMYGOD! I almost choked to death today while driving to class! It was very scary. I was drinking coffee and driving while putting on lipstick and talking on the phone (ok, at least that was on an earpiece!). Amidst all this chaos the function that breaks down is my ability to swallow...and I suck a bunch of coffee down my air pipe. I am hardly able to take a breath and really didn't know if I was ever going to again. My mom is frantically shouting "What's going on?" and "Are you ok?" into my ear as I choke and sputter and gasp on the other end of the phone. I finally get a wee bit of air down and start trying to cough but I am choking so bad that in my effort to remove the coffee from my windpipe, I vomit all over myself...and my car. Mind you I am still driving! Lucky for me, and all the drivers on the open road, I had just pulled into the parking lot at school and only had to drive slowly in a straight line...anything more complicated would have surely been a disaster. And very lucky for me I was able to breathe again, and amazingly enough I found a parking space right away. But now I have vomit all over my face, dripping down the front of me, all over the steering wheel and in the open makeup bag sitting on my lap. And I have tears streaming down my face. And I am so exhausted I can barely hold my arms up. And class starts in 6 minutes. Ahh, this is why you don't skip class for something stupid like misplacing a garage door when you puke on yourself you can skip for a real good reason! But being the stubborn bat that I am I pour water all over myself (luckily I was wearing all black), dry my face off, wade through the dripping wet mess that is my makeup bag to find some perfume that I douse myself in and head to class. Drama!

I have been going through a rather intense cleaning and organizing phase these last 2 days. I continued the Great Spring Clean of 2010, did laundry and paid all the bills yesterday. Non-stop. No shower, walk, barely any food. It is almost as if I don't trust that I will actually finish the job. If I push myself relentlessly and don't waver, then it is done before I have a chance to sabotage myself. I still am in shock when I push myself harder than I have in a long while and I don't crash and burn. I lived for so long, years, unable to clean my house or do laundry or grocery shop without assistance. And I am so used to settling for watching life as the dust, dishes, paperwork and dirty piles of clothes mound up around me. That was my M.O. for so long. But the house feels lovely. And I don't feel that bad. Except for the choking. That really threw me for a loop.

I am switching to a new bank and it is a colossal pain in the wazoo. Switching all the auto-debits, direct-deposits, timing it right. This is why my husband and I still have the first joint bank account we opened together before we were even married 10 years ago. As a matter of fact, taking charge of moving our finances to a new bank is, in and of itself, enough to show me how much I have improved, for that is not something I would have even attempted to do in the past.

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Tuesday, March 23, 2010

Playing Hooky

Oh my I feel like this is the first time I have sat down all day and I am exhausted! I cleaned both bathrooms and bedrooms from top to bottom and under that and in between that. It is amazing in my clean! I found a lost earring (one of my favorite), the missing garage door opener (more on that later) and fixed my computer monitor (the cord was unplugged from the cord, duh!). I cleaned the spots out of the carpet, threw away old magazines and actually moved things to vacuum under them. I took the down comforter off the bed and put on my spring blanket. I showered and walked the dog and put makeup on and had an extremely productive day.

"Wait, on Tuesday don't you go to class?", one might ask. "Didn't you wake up at 7:30 in the morning, like you do every Tuesday and Thursday, to study for your Spanish quiz?" Well, yes and yes! But I was not very focused on studying and running totally behind schedule and racing out the door 5 minutes late and then...I cannot find the stupid garage door opener! I am stuck at home, so instead of going to the complex office to borrow their garage door opener and showing up way late to class, I decided to redeem myself and actually do something productive around the house. I guess when it gets bad enough I will do something about it, and bad enough it was! But I did cut class, shame on me. My house is clean, but consequently I am in an awful lot of pain. So I did some yoga, deeper stretching than I have done in a long time, and suddenly, along with 2 Tylenol PM's, I don't hurt so bad.

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Monday, March 22, 2010

Deciphering Healthcare

I hear some amendments to our current healthcare system passed into law recently. Healthcare is something I know way more about than I ever wanted to. I now speak the language of deductibles, EOB's, MOP's, co-pays and in/out-of-network. My medical costs have been astronomical, mainly because modern medicine offers very little preventative or alternative coverage and does not know jack shit 'bout Fibromyalgia! It has taken me years, and many amazing doctors and providers, and many stages and levels of healing, to get to where I am today. I have a great doctor at the Fibro & Fatigue Center in Las Vegas to thank, an amazing acupuncturist in the Bay area, a UCSF resident that was the first doctor to take me seriously, a research doctor at Stanford, and currently an awesome osteopath at the Mayo Clinic. There have also been many duds in the mix. There have been lots of bad drugs, asshole physicians and unsympathetic caregivers. We have paid and paid and marched on, always with the faith that things would get better...I would not always be unable to sleep, every inch of my body in writhing pain and mentally unstable. I would not always suffer from vice-gripped migraines, the "afternoon flu" a.k.a. EBV, swollen hands and throbbing feet stabbing knives into my calves with each step. And I am so overwhelmingly happy to say that today I don't.

Oh it's not gone...never gone. But so well managed I can now look back with perspective and say with confidence that the worst is behind me. What I have learned about myself and my character is huge! My capacity to march forward into the eye of the storm, my ability to pick myself up by the boot straps and do what needs to be done. There were months where my only activities were 3-4 doctor appointments a week. The money we have spent on prescriptions and supplements and provider expenses could have paid for a house by now! So do I think this healthcare bill will change things for me, or for people living with Fibromyalgia, or worse, those yet to be diagnosed? No, not really. We will still have a really hard time getting a diagnosis, we will only be offered drugs that "mask" the symptoms, not heal the source. We will still gain the best relief from natural, holistic living, something that is not given its proper place in mainstream medicine. And we will still cling to any concrete proof that what we have is indeed real, needing to be researched and needing to be understood, all the while this very tangible and ever-present pain being classified as a "syndrome".

Will I say at the end of the day I am better off for this? Am I a better person for having stripped myself of all control and options, surrendering to an illness that required intensive, repetitive perseverance to conquer? I am stronger and more capable, more faithful and lighter of heart because of it. My priorities are correctly in place and I have educated myself to the truths of the relationship between man and nature. But if you asked me to go through it again to gain the same insight I would have to tell you to shove it...where the sun don't shine!

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Sunday, March 21, 2010

1 Hour And 20 Minutes Late

Shewoosh! It has been an insane 4 days since I last wrote. I am exhausted and teetering on sick, having lots of back pain and wondering how Spring Break is now over and I am in no shape to get back to my routine, let alone improve on it! Taxes on Wednesday were brutal. We owe. That sucks. Then the debauchery that ensued at the bar that afternoon for St. Patrick's Day was reminiscent of a college binge. I am not sure my husband or I have even recovered... I spent all day Thursday lying around the house nursing the hang-over and quite irritated about the whole thing. I attempted to finish up my filing project just to have something beside how bad I felt to focus on, and managed to only make a big mess so my office is once again a paperwork explosion.

Friday I really screwed up at work. I stayed up way too late the night before. When my alarm went off at 7:30 in the morning I pushed snooze, as I always do. What I did after that I have no idea but my eyes popped open at 9:30 and I immediately panicked! I needed to leave the house at 10 (not even close to possible) to be at work at 11. I was still walking through mild quicksand from the never-ending hangover as I attempted to scrape myself together, make a PB&J to eat for breakfast in the car and barely rush the dog outside to pee. At around 10:15 I am pouring my coffee when I knock a glass out of the dish drainer and it shatters to the ground. As I am sweeping up the broken shards my phone rings. It is my boss, wanting to know where I am. I told her I was running quite late and she informs me that I was supposed to be there at 10, not 11. So when I rush in at 11:20 my first question was "Am I fired?"...

Luckily she is a forgiving woman, and that is not representative of my regular behavior so I believe I am okay, but I worked my butt off until 7 o'clock that evening and did not make it home until almost 8. I was exhausted! Saturday was another full day of work (of course I was on time) and then dinner with the family at Mom's house. So I wake up this morning wanting to lie in bed all day. But we did our usual coffee-dog-park-breakfast Sunday morning, came home and laid out at the pool, watched some TV and went to the grocery store. We had a nice day together. Relaxing. I am TIRED and have a lot of pain in my jaw and around my glands. I am also coughing and sneezing and feeling generally bleh. I have so much to do to catch up around the house, need to do my homework and study and need to exercise and get lots of sleep this week. And the beat goes on...

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Wednesday, March 17, 2010

Memories Of Another St. Patrick's Day

Yesterday I was overwhelmingly productive. I re-potted a plant, walked the dog, did laundry, paid the bills, cleaned the laundry room, watered the plants and tackled 2 years worth of un-filed paperwork. My office looks great! The flip side is that I am exhausted. I have a headache and swollen glands. My jaw aches. I was up until 2 in the morning and awake at 8:30. Coffee come find me! After a wet and chilly spring the weather is finally overwhelmingly and amazingly beautiful. We are going to a bar/restaurant across the street for a little afternoon drinkin' and St. Patty's day people watching after our appointment with the tax lady. We have not done anything like that in a long time. Should be fun but drinking makes me feel awful so I indulge very infrequently. St. Patty's day is a kind of warped and twisted anniversary for us...

Picture it...Northern California, 1999: It's funny to think back on who my husband and I were when we first started dating. We were those wild-crazy-party-kids at the #2 ranked party school in the country. Two kids with nothing to loose. It was the liberal '90's, oh it was such a different time! The Clinton years. Things were promiscuous, irresponsible, only focused on the now. The economy was building to its climax and our countries greatest obsession was who sucked the President off. Frivolous and superficial. There was no war, the twin towers still stood tall and proud and America had yet to feel the pain the greed and excess of the last 30 years would bring.

The traditions for St. Patty's day at the university we went to ran deep and proud, if more than a little dangerous. In California liquor cannot be served from 2 AM until 6AM. As legend has it, we were up and in line for the bar at 4AM so when they opened at 6 we could be the first ones in (there was a line, I swear!). By the time the sun comes up we were already way past drunk and carrying on quite enthusiastically. Sick by 10 AM, then back to the bars for another round. My husband and I had been friends for a few years (very long story for another time) and things were starting to heat up between us. So on my way home from the second go-round I stumbled upon him hanging out on his front lawn. I yelled at him, but told him I would not talk about anything serious unless we were both sober. A few hours later (well maybe more than a few), and a wee bit more sobriety, and over he comes to find out why I am so mad at him. That night we struck the spark that lit the embers that is the smoldering love we have today. See, good things can come from bad choices!

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Tuesday, March 16, 2010

Dashed Dreams And Shattered Illusions

I got my census information in the mail the other day. It is kinda cool to be reminded we are all really just part of a collective of these United States. Makes me seem smaller, my problems not nearly as big. While I was reading a magazine the other day I stumbled upon a thought that we (the citizens of the USA) are really just living out our fore-fathers experimental idea of government. This type of capitalistic democracy has not been done quite this way before. So as we bend and manipulate our Constitution to remain relevant and applicable to today's situations, I believe we need to remember the one characteristic that we all share. We are all human beings first and foremost, and all Americans, fellow countrymen before partisanship division.

I think back on where I was in life during the last census. 2000. I was living in Los Angeles, my 1st year out of college. My boyfriend had moved into my 350 square foot apartment with me and we had become engaged on the eve of the millennium. We were making a combined $15 an hour. We were so young and had so much hope and so many dreams and such amazing aspirations. And so much work to do! It is interesting to see us so much worse for the wear 10 years later. We are battered and bruised and weary. I can thank many of the hard knocks of life for some of it, but the real damage came with chronic fatigue syndrome and Fibromyalgia. This has been so freakin' hard on both of us! Some days I can put one foot in front of the other and just go and some days I am paralyzed by the reality that life has been ridiculously difficult and not at all turned out the way it was supposed to!

I am feeling a bit better today. The face pain is gone. I do have inflammation in my right hand between my thumb and index finger which is strange. Today is another housewife day around the house. Already I am off to a better start than yesterday. I woke up, did my hair, showered & took a nice walk with my pooch. Made breakfast and here I am, 12:20 in the afternoon and just getting my day started. I am going to HAVE to go to bed earlier so I can wake up much earlier once summer hits. The heat is so intense there is absolutely no walking after 8 o'clock in the morning and I just can't do that to either the dog or myself. It's time to loose weight, not hibernate for the summer and pack those pounds on!

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Monday, March 15, 2010

Feelin' Not So Groovy

I got enough done today to feel productive but not provoke any symptoms, which in turn produces guilt that I am not doing enough (just stick it all in that big circular file in the sky!). Let's be honest though, I am not. My husband works long hours at a job he does not enjoy and brings home the majority of our income. I feel guilty and hopeless, and on my more focused and low-pain days I chastise my inner housewife for falling so short of domestic goddess Bree Van De Kamp's standards. I finally tackled some of my chores, though. I groomed and bathed the dog. We took a nice walk with a brief jog. I cooked dinner. I blogged. A lot. But sadly I am kind of getting used to living in a messy house. I wish I would do something about it but can't seem to bring myself to. A clean house must not be very important to me?

I am having a shingles flare-up on the left side of my face. My eye hurts really bad, the inside of my mouth is shredding and the entire left side of my face aches and throbs. This is when I start making excuses to lie around the house all day, smoking and watching TV. I took some extra lysine, an Epicor and a Valtrex. Hopefully this goes away soon. My jaw is starting to really ache. I still have tons of stuff that I did not get done today but will channel my inner Scarlet and worry about it tomorrow. After all, tomorrow is another day!

I have been taking an introductory Spanish class at my local community college (I studied French in high school and un poquito, or should I say un peu, in college). It is amazing! I am really enjoying learning this language and using my brain again! I feel that I was cognitively impaired for so long and am quite surprised I am able to learn and retain new information so effectively. I have taken up listening to Salsa music continually and watching a novella or two as well. It is very helpful in picking up the sound and structure of Spanish. They are very dramatic, though, it is so funny! This class is also good for my sense of obligation. It's good for me to be up and about, have somewhere I feel a personal responsibility to be. It keeps me from being cooped up in the house all the time.

Why is it so hard for me to get up in the morning, jump in the shower, walk the dog, do yoga, eat breakfast and get myself fixed up? Instead I lie in bed reading (or blogging), throw on some old thing when the dog starts bugging me to go out, and do stuff around the house all day, never getting out of my sweats or bothering to pinch my cheeks or put a ribbon in my hair. Pathetic! I am a grown woman. A wife with a home and responsibilities and standards. It is just plain embarrassing when my husband comes home from work and the bed is not made and I have not yet gotten out of my jammies. Worse to say it happens more often than I would like to admit.

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Background: The Start Of Chronic Fatigue Syndrome & Fibromyalgia

A few months later my husband graduated with 2 BS degrees in Finance and we were ready to start our life for real. During the first 5 years of our marriage he had been completing his undergrad full-time and working full-time. This had left us a bit distant and out of touch with each other. We were really looking forward to some re-connecting and had scheduled a week of "vacation" together while he graduated and we moved. We were living in San Francisco and prior to graduation he had secured a new job, in his field, on the Peninsula. I had decided to buy myself a dog as a present for his graduation and was really ready for life a bit slower, easier and cheaper than city living offered. So in my type A+++ fashion I set out to do all of this in 1 week. Bam! Enter my own personal hell week. You know when they talk about a "trigger event" for Chronic Fatigue Syndrome & Fibromyalgia? Well, here is mine: The week he graduated we had a large graduation party with tons of out-of-town family and friends, moved 2 days later and got the new puppy the day after that. Then surprise! My grandfather passed away so I had to fly back to Illinois for a whirlwind funeral, all during the week my husband and I were supposed to be getting reaquanted with each other. Oh, how many times we have talked about if we had just gone to Mexico and taken a real vacation instead of this madness, maybe I would not have gotten sick...

But I have never felt the same since then. I started having lots of physical pain and exhaustion. I felt like the muscles in my legs were separating from the bones and like my abdomen was going to either implode or explode, but could not tell which. I could not make it to work on time or through a whole day of work. I felt like I was moving through quick-sand. I would sleep 10 hours a night and wake up exhausted. I was in hell. I ached everywhere and felt like I was constantly on the verge of getting the flu. I was emotionally and physically in chaos. I immediately stepped down from my executive position and went into a 4 day a week assistant-manager job. I knew after the struggle with pancreatitis that whatever this was, I could not be focused on my career as well. My solution was to stop taking Tricor, the triglyceride medicine I had been put on after the side effects from Lopid were discovered. Even though I had been on it for a few months I was convinced what I was going through was another adverse reaction, but to no avail. I saw doctor after doctor and test after test kept showing I was as fit as a fiddle. No one could tell me what the hell was wrong with me! I was put on anti-depressants because, according to one doctor, I was depressed, nothing else. I existed in this ebb and flow of crash then push, constantly feeling awful and getting no answers or relief from the pain and exhaustion. I did find one doctor who diagnosed me with Chronic Fatigue Syndrome and Fibromyalgia and another that ran all the tests to confirm that looming and vague diagnosis of exclusion. But there was no real treatment and certainly no cure! Nothing more than some old out-dated heavily-sedating medications. Nothing modern medicine had to offer, and I was quickly disintegrating.

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Background: Medical History, The Beginning

I have a complex medical history, as most of us with Fibromyalgia do. If you are interested in the origins of my health struggles this is where you will find them. In November of 2004 I was hospitalized with a severe case of pancreatitis caused by a genetic malfunction of my triglycerides, called Hypertriglyceridemia. Triglycerides should be under 200, but mine were 7,000. This was my 3rd time in the hospital with pancreatitis and by far the worst. After puking fruit-punch Gatorade all over the ER waiting room and nearly suffocating because I was in so much pain (a major complication of pancreatitis is lung failure), they did an EKG on this 28 year woman to rule out a heart attack! I was admitted to the hospital and put on IV NPO (no food or water), given serious pain meds and placed on Lopid, a triglyceride medication. The pain was so unreal that the thought of food was like 10 more daggers piercing my gut, squeezing in among the 100 already surging and stabbing it. On the 8th day they threatened to stick a feeding tube up my nose if I did not at least try some clear broth. Needless to say the day after that I was on my way home. Any way to communicate the pain of pancreatitis? No, not really, except I would not wish it on the worst person in the world. It must be what hell is like, unbearable misery and unrelenting, excruciating pain.

After returning to work I was still, for the next few months, in a significant amount of abdominal pain and popping Vicodin every day to get through my 10-hour-a-day stressful on-my-feet Prestige Cosmetics executive job. After extensive CT's and endoscopic testing revealed nothing was wrong (WHAT???), I was finally taken off Lopid (my husbands idea) and bingo! The pain was gone! However, after a few months my triglycerides eventually floated back up to 500 so I was put on a different type of medication.

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A Day In The Life

Each day in the life living with Fibromyalgia is an exercise in management. A balance of the yin & yang. A mandate to push (but never too much) to achieve, but stop before the crash. A battle of self-preservation fought against self and those closest to us. I have had terrible lows and a few soaring highs and have fought harder than I have ever fought for anything in my life to reach a middle that allows me a taste of everything. I can work, but not too much. I can exercise, but not too hard. I can push myself and go go go, but not for more than a few days in a row...and the price I pay is steep and all consuming. I can laugh and love and enjoy and savor now. Experiences that were impossible when I was wrapped up in the all-consuming misery of living with Fibromyalgia.

Today is a day off. From the world. But a work-day for the housewife. I need to groom the dog and highlight my hair and vacuum and exercise. But has Queen Procrastinator done any of this? No, I have started a blog! I am still unclear as to what a blog actually is, but my husband says that keeps me pure. So here I am publishing my deepest thoughts and most intimate experiences onto the world wide web. God bless 2010! The point is not to obsess on this (which is easy for me to do), but to channel my feelings through this. While still taking care of my life...not sitting here on the couch all day...blogging...

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Sunday, March 14, 2010

What Is A Blog?

I was talking to my husband last night about how I really need to have more discipline doing my daily writing. He suggested I start a blog. I don't really know what a blog is...I have never read one or even seen one for that matter. So naturally I scoffed at him, telling him I have nothing of any interest to anyone to write about. He asked me what the hell I was talking about and said, "Write about what you know most, about Fibromyalgia! You have made amazing progress, progress the doctors never expected, and you have a lot of good information and insight to share." Being the self-proclaimed expert that I am, I pondered his challenge. He is right, I have a voice and point of view that are begging to be heard and I am well versed in the daily nightmare that encompass living with this disease. Unfortunately, I lack the organization, focus or opportunity at this point in my life to actually do anything serious about it. So after about all of 5 minutes of deliberation I figured what the hell, I will give this blog thing a try!

I am a 33 year old married woman currently living with managed Fibromyalgia. I got sick when I was 28 years old and have had one hell of a tailspin since then just trying to make life livable again. Beating this disease is the hardest thing I have ever done, and by the grace of God that I ever have to do. It has cost me dearly in every aspect of my life, but it has grown me in ways I never thought possible as well. It has challenged me and pained me and given me a gratefulness I did not possess before. I am blessed with an amazing husband, caring family and supportive friends who have stood by me through the worst of it. When I got sick I was so young and had so much to live for there was only one brief glimmer of a moment when I was without fight. Oh, and I am one stubborn bat as well so I guess that goes to my credit too!

What my tale tells is a complex web of devastation, disappointment, confusion and loss. It is also a story of self-realization, healing, redemption, acceptance and forgiveness. I will intermingle the daily chronicles of my life amidst the history and reflection of my journey with Fibromyalgia. I hope it will inspire someone to gain insight, hope, direction or fight in their personal battles. I also hope I will make peace with the force that knocked me off my feet and struck me down repeatedly for years in my unrelentless attempt to claim my life back.

So here we go...welcome and have fun!

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