Oh my head is spinning today! I am so unbelievably overwhelmed with the details of my life. My phone is ringing off the hook with creditors hounding my heels, my mailbox is overflowing with debt collection and delinquency notices. Everyone wants money from me and I don't have any to give them! Having two strokes was expensive, and I have insurance! God bless those that don't, for I can only imagine how much harder this could be. We were already in mounds of debt from CFS and Fibromyalgia and barely hanging on by a thread, and having to quit my job has hurt us badly. We have been watching every penny but when there are more pennies going out than coming in, what's the difference? I am overwhelmingly manic today on top of all this, ADD all over the place. I start 2 things before I finish the 3 I am working on. The power of FOCUS is not my friend! But I refuse to do the Xanax knockout because it will all still be here waiting for me tomorrow, messier, sticker, more complicated. There is no escape and I must deal with it.
When I was in the hospital life was so clear-cut. What was imperative was so easy to see. Life, love, God, relationships, those are the important things in life. My husband and I reevaluated our priorities and decided he was going to stop working himself to the bone, financial fallout beware. He used up the last of his vacation for the year taking care of me that first week home, and taking care of himself, too. My strokes scared the bejesus out of him! He came very close to losing the wife he loves so much and wants a long, happy life with and it freaked him out. The fact that strokes took his mother nearly 10 years ago does not help his psyche any, either. But we have fallen right back into the trap we were in before, just more complicated, more problems, more stress. Where did that calm and peace in the absolute truth go? Where did the cojones to put ourselves first go? Where did the attitude of living in faith not fear go? I guess it flew out the door with my bank account!
In the middle of this manic-panic I call him up and tell him I am going to have to get a part-time job but know that will cut into this blog, The Fibromyalgia Crusade, and all the networking and awesome things that are happening because of it, and that just breaks my heart! He tries to calm me down but I am nuts! I am opening mail, on the phone, Facebooking and freaking out simultaneously. His suggestions to go to the pool or watch some T.V. fall on deaf ears. "You think I have time for that?" I shout! All of this must get done RIGHT NOW! We get off the phone as I glance up at my rosary hanging from my desk lamp and I know I must pray. Chanting through the decades fills me with peace and calm, a neurotic peace and calm, but none the less... I resume my multi-tasking manic a wee bit more focused as my husband texts me to tell me he is now going to work Saturdays and I am NOT going to get a part-time job. The work I am doing here is too important and holds too much potential to put on the back-burner of my life. I am astounded, flattered and overwhelmed by his faith in me, but cannot stand to see him burdening himself further. He is already stretched so thin! And I really had to ask myself, as I fluffed and puffed and prettied myself up for the day, where did my faith go? Is it just there when things get really bad or are really good? Is it just there when things seem manageable, when I can see the road I am on with no hidden twists and turns, no foggy patches, no blind spots? Is it only there for the crisis, not the long and arduous monotony of the uncertainty day in and day out? NO! It is there always! So my husband is NOT going to work on Saturdays, we will figure out the financial fix we are in one way or another and I am believing opportunity is going to come my way. I am believing that the number of people that take comfort in my voice of realistic optimism is going to grow further than Facebook or this blog, far beyond my wildest dreams... I am ready, I am waiting...opportunity come find me!
Thanks for joining,
Leah
Thursday, September 30, 2010
Wednesday, September 29, 2010
Let It R-O-L-L...
I am an uptight control freak. As much as I try to relax and let go that is just who I am. I spent years self-medicating it away, hoping if I had enough to drink or smoke or could dull the intense distraction of noticing every little thing and letting it get to me I could find peace. I now believe that behavior only served to complicate its severity. They say its the type "A" personality that get CFS & Fibromyalgia, the over-achievers, the doers, the perfectionists, the driven. I certainly fall into that category. I know now that if I had listened to my body and not pushed through CFS I would not have developed Fibromyalgia. But that is not how I was raised, that was not a society we live in and that does NOT pay the bills! I see many of you out there doubted by those you love the most that have no grasp, no concept of what you are going through. They tell you to tough it out, get up off the couch and go live your life, exercise the pain away, and it breaks my heart. I want to grab them by the shoulders for you and shake some sense into them! Fibromyalgia HURTS SO BAD AND ITS NOT JUST GOING TO GO AWAY! This is real and until it is treated it pounds the body relentlessly and soaks up every thought every minute of every day. It is a real physical condition and must be addressed or will continue to get worse.
One of the hardest lessons learned throughout my CFS & Fibromyalgia experience was how to let go, be it simple house cleaning or complicated life isues. How to let stuff roll off my back, how to not internalize stress and anger and frustration because the consequence would be immediate! I would get sick in a matter of minutes, feverish, sore throat, throbbing sinuses, aching body. There were many injustices committed against me when I was so sick that I had to let go because the ramifications on my health were so severe. There was a car accident where a man ran a stop sign and plowed into us and then lied and said WE ran the stop sign. Oh that one was hard! There was the hospital bill I was paying as much as I could afford monthly, but not as much as they wanted, and with NO WARNING WHATSOEVER one Saturday morning I got a call from a collection agency informing me they now owned the debt. After rounds of letters to the hospital, to no avail, I had to let that one go, too. There were others, work, family, life, that I had to decide to release back into the universe and trust that everything works itself out in the end. I was one sick woman and simply could not take it on and recover from this illness at the same time.
Fibromyalgia has softened me. It has reduced my expectations and presumptions of life. It has taught me how to laugh at the absurdly painful and truly not sweat the small stuff. On my good days. It has taught me acceptance, acquiescence, compliance. Allowing what is to just be. In other words, taking that stuff that happens in life that ram-rods your spine straight against your back and sends shooting, radiating flashes of tension and stress right into your brain and letting it R-O-L-L off the slope of your curved vertabrae and drop into the ocean of "Can't do anything about that so, NEXT!". It is hard to get to that place, hard to accept you cannot do what was once accomplished with ease. Extremely hard to not be able to fight for your rights because you just get sicker. But it is completely necessary as well. As my step-mother, the most obsessive OCD clean-freak you could ever meet, told me on one of my last visits home as her 25 year union with my father dissolves in divorce, "Who cares if the house is clean if there is no one here to share it with". So as I am stretching on the living room floor this morning, looking at how badly I need to vacuum for the 12th day in a row I am laughing at myself. I am at peace with dust and dirt and have come a VERY long way, baby!
Thanks for joining,
Leah
One of the hardest lessons learned throughout my CFS & Fibromyalgia experience was how to let go, be it simple house cleaning or complicated life isues. How to let stuff roll off my back, how to not internalize stress and anger and frustration because the consequence would be immediate! I would get sick in a matter of minutes, feverish, sore throat, throbbing sinuses, aching body. There were many injustices committed against me when I was so sick that I had to let go because the ramifications on my health were so severe. There was a car accident where a man ran a stop sign and plowed into us and then lied and said WE ran the stop sign. Oh that one was hard! There was the hospital bill I was paying as much as I could afford monthly, but not as much as they wanted, and with NO WARNING WHATSOEVER one Saturday morning I got a call from a collection agency informing me they now owned the debt. After rounds of letters to the hospital, to no avail, I had to let that one go, too. There were others, work, family, life, that I had to decide to release back into the universe and trust that everything works itself out in the end. I was one sick woman and simply could not take it on and recover from this illness at the same time.
Fibromyalgia has softened me. It has reduced my expectations and presumptions of life. It has taught me how to laugh at the absurdly painful and truly not sweat the small stuff. On my good days. It has taught me acceptance, acquiescence, compliance. Allowing what is to just be. In other words, taking that stuff that happens in life that ram-rods your spine straight against your back and sends shooting, radiating flashes of tension and stress right into your brain and letting it R-O-L-L off the slope of your curved vertabrae and drop into the ocean of "Can't do anything about that so, NEXT!". It is hard to get to that place, hard to accept you cannot do what was once accomplished with ease. Extremely hard to not be able to fight for your rights because you just get sicker. But it is completely necessary as well. As my step-mother, the most obsessive OCD clean-freak you could ever meet, told me on one of my last visits home as her 25 year union with my father dissolves in divorce, "Who cares if the house is clean if there is no one here to share it with". So as I am stretching on the living room floor this morning, looking at how badly I need to vacuum for the 12th day in a row I am laughing at myself. I am at peace with dust and dirt and have come a VERY long way, baby!
Thanks for joining,
Leah
Tuesday, September 28, 2010
Let's Go Shopping!
Trying to manage Fibromyalgia without a doctor that is compassionate, on your side and willing to work with you is impossible. Simply impossible. I have seen more than my fair share of medical professionals that were doubters, unkind and knew far less about CFS and Fibromyalgia than I did. I would ask them, challenge their knowledge, and find they had no clue. I would set out to each appointment with a glimmer of hope, a bit of optimism that someone could help me, only to leave in tears, sobbing my way home crestfallen and despondent. Yet the information is out there... Let's be honest here, folks, Fibromyalgia is hot! The number of patients are on the rise, as many as 6 million in the USA alone! It is on the cusp of gaining major recognition as Pfizer advertises the life out of Lyrica. We now have 3 FDA approved drugs to manage symptoms, and while they may not work for everyone, at least it is no longer considered "all in your head" by certain sectors of the medical community. Yet many doctors remain clueless. They will whip out that prescription pad and stick you on whatever non-narcotic drug you can tolerate, whatever drug the rep has left the most samples to distribute, whatever Big Pharma has told them will work, side-effects beware. They will force you to battle them for narcotic pain meds, treating you like a junkie, with no true grasp of how much torture you are really in. They will tell you to eat less and exercise more, with no concept as to how bad you hurt and screwed up your hormones are, what a victim you are to the side-effects of the drugs you are already on. See they don't truly understand the illness and all the multitude of symptoms that go with it. It is not just a pain syndrome! I see the The American College of Rheumatology is proposing a new set of diagnostic criteria for Fibromyalgia that includes common symptoms such as fatigue, sleep disturbances, and cognitive problems, as well as pain. As awareness campaigns are springing up left and right we are gaining the confidence to talk about it, no longer ashamed the doctor could not come up with something more "real" to diagnose us with. So there is no excuse for the way we are still treated and dismissed by certain archaic medical professionals.
It is their loss, actually. As the numbers of Fibromyalgia patients increase they are missing out on a fabulous money making opportunity by staying clueless about it, sticking their heads in the sand of the dark ages of that horrible "blame the patient" mentality most of us have had to endure. I say we take some pride in ourselves and our diagnosis and stop supporting these doctors that treat us so poorly! It is critical to have the right combination of meds to manage this illness, keep the pain at bay, insure sleep at night. And this is NOT the same for everyone. Part of the problem with Fibromyalgia is that it is such an individual illness, custom to each patient. So as an important step of The Fibromyalgia Crusade, my awareness campaign that I am launching soon, lets go shopping! Let's change the doctor experience entirely. Let's take control of this crucial aspect of our management and take pride in ourselves and the true reality of what we are dealing with. Lets stop moaning and complaining and expecting the same unsympathetic doctor to suddenly care and set the tune of the doctor visit so it is under your control. I know this is extremely difficult when you are in so much pain, fog-brained and exhausted, but this is quite possibly the most important step to getting Fibromyalgia under control, so put everything you have into it! If you are without insurance or on Medicade you will have to fight all that much harder for yourself.
It should go something like this:
1. Seek out referrals, research, educate yourself. Know the latest treatments and drugs. Here are some links that may help:
2. DRESS FOR SUCCESS! No, don't wear a business suite but DO NOT walk into that appointment a disheveled mess. Wear some attractive clothing, brush your hair and pinch your cheeks. Put a little lip gloss on. Appear like a sane, rational and normal person that is ill. Yes, the "you don't look sick" aspect is frustrating but you must be taken seriously and not dismissed as a mental case. This is much easier to convey if the doctor is looking at a patient that appears to "have it together".
3. Bring all your previous test results. Blood tests, imaging, etc. Your current and previous doctors should give those to you no problem. But DO NOT transfer your entire medical records from an "unsuccessful" doctor to a new one, just bring in any previous test results.
4. Start an accurate and easy to glance at daily symptom chart to bring to your appointment. Simply list all your symptoms and assign them a number (1-10) for each day. Keep it simple, neat and easy to read. It is hard with the Fibro-fog to come across as a sane, coherent individual so documentation is necessary. Bring a list of your current medications and ones you have tried in the past. Bring everything you possibly can so if you find yourself in the Fibro-fog of your life you can still have a successful appointment. The more organized and pro-active you appear the more seriously you will be taken.
5. Clearly state your symptoms and hardship without a desperate or emotional charge. Explain what you are doing that is working and what your greatest obstacles are. Challenge the doctor to work with you so that your Fibromyalgia is managed and does not rule your life. If after all this you have a bad rapport or feel degraded or condemned, gracefully exit the appointment and never go back. Then start over again with a new doctor.
Look at it like this... if the red dress does not look that great, go back out to the dress department and try on that green one, and if that one is just ho-hum go try on the blue one, keep trying until you find the one that makes you look amazing! That same attitude needs to be applied to your doctor. Take the emotion and desperation out of the anticipation of each doctor appointment and go in with a curious open mind. Wait to see if they impress you. Lower expectations lead to no disappointment! And trust me, you will eventually find a doctor you click with. Hopefully one that will get your pain under control and help you sleep so you can start the process of rebuilding your life. Take responsibility for your health and stop lining the pockets of these apathetic doctors with your hard-fought money! It is absolutely time we were taken seriously, but until we demand it, it will never happen. Medical science will figure out the mess we are in one day... Until that day comes we are the suffrage movement, the civil rights movement, a revolution...The Fibromyalgia Crusade!
Thanks for joining,
Leah
It is their loss, actually. As the numbers of Fibromyalgia patients increase they are missing out on a fabulous money making opportunity by staying clueless about it, sticking their heads in the sand of the dark ages of that horrible "blame the patient" mentality most of us have had to endure. I say we take some pride in ourselves and our diagnosis and stop supporting these doctors that treat us so poorly! It is critical to have the right combination of meds to manage this illness, keep the pain at bay, insure sleep at night. And this is NOT the same for everyone. Part of the problem with Fibromyalgia is that it is such an individual illness, custom to each patient. So as an important step of The Fibromyalgia Crusade, my awareness campaign that I am launching soon, lets go shopping! Let's change the doctor experience entirely. Let's take control of this crucial aspect of our management and take pride in ourselves and the true reality of what we are dealing with. Lets stop moaning and complaining and expecting the same unsympathetic doctor to suddenly care and set the tune of the doctor visit so it is under your control. I know this is extremely difficult when you are in so much pain, fog-brained and exhausted, but this is quite possibly the most important step to getting Fibromyalgia under control, so put everything you have into it! If you are without insurance or on Medicade you will have to fight all that much harder for yourself.
It should go something like this:
1. Seek out referrals, research, educate yourself. Know the latest treatments and drugs. Here are some links that may help:
- "Find a Doctor" from About.com:health
- The American College of Rheumatology website
- American Medical Association's DoctorFinder website
- Co-Cure ME/CFS and Fibromyalgia "Good Doctor" List
2. DRESS FOR SUCCESS! No, don't wear a business suite but DO NOT walk into that appointment a disheveled mess. Wear some attractive clothing, brush your hair and pinch your cheeks. Put a little lip gloss on. Appear like a sane, rational and normal person that is ill. Yes, the "you don't look sick" aspect is frustrating but you must be taken seriously and not dismissed as a mental case. This is much easier to convey if the doctor is looking at a patient that appears to "have it together".
3. Bring all your previous test results. Blood tests, imaging, etc. Your current and previous doctors should give those to you no problem. But DO NOT transfer your entire medical records from an "unsuccessful" doctor to a new one, just bring in any previous test results.
4. Start an accurate and easy to glance at daily symptom chart to bring to your appointment. Simply list all your symptoms and assign them a number (1-10) for each day. Keep it simple, neat and easy to read. It is hard with the Fibro-fog to come across as a sane, coherent individual so documentation is necessary. Bring a list of your current medications and ones you have tried in the past. Bring everything you possibly can so if you find yourself in the Fibro-fog of your life you can still have a successful appointment. The more organized and pro-active you appear the more seriously you will be taken.
5. Clearly state your symptoms and hardship without a desperate or emotional charge. Explain what you are doing that is working and what your greatest obstacles are. Challenge the doctor to work with you so that your Fibromyalgia is managed and does not rule your life. If after all this you have a bad rapport or feel degraded or condemned, gracefully exit the appointment and never go back. Then start over again with a new doctor.
Look at it like this... if the red dress does not look that great, go back out to the dress department and try on that green one, and if that one is just ho-hum go try on the blue one, keep trying until you find the one that makes you look amazing! That same attitude needs to be applied to your doctor. Take the emotion and desperation out of the anticipation of each doctor appointment and go in with a curious open mind. Wait to see if they impress you. Lower expectations lead to no disappointment! And trust me, you will eventually find a doctor you click with. Hopefully one that will get your pain under control and help you sleep so you can start the process of rebuilding your life. Take responsibility for your health and stop lining the pockets of these apathetic doctors with your hard-fought money! It is absolutely time we were taken seriously, but until we demand it, it will never happen. Medical science will figure out the mess we are in one day... Until that day comes we are the suffrage movement, the civil rights movement, a revolution...The Fibromyalgia Crusade!
Thanks for joining,
Leah
Monday, September 27, 2010
The Day I Passed Out On The Sidewalk
My husband and I have been going through one of those "not on the same page" phases marriage knows so well. You know, when you tell him the sky is blue and he says no its gray and within 2 minutes you are either screaming at each other or not speaking? Our communication is just off. We got married Catholic, which means we attended a mandatory premarital seminar that turned out to be really quite interesting. One of the topics they touched on was our different "family of origin" methods of communicating and how that would play into our way of relating to each other, and man 'o man has it ever! My husband is from a hot-headed ethnic family that yell as their fundamental way of corresponding the slightest discord. My WASPish clan was more prone to pouting and the silent treatment. So over the course of our nearly 11 year relationship there has been LOTS of miss-communication. We have it pretty ironed out at this point but it still rears its ugly head 'a plenty! I am most certainly NOT the easiest person to get along with these days. Beside the Prednisone manic (which is calming a bit as I dose down), my immune system is under attack, I constantly feel I am getting sick, Fibromyalgia pain is sneaking back up on me with a vengeance and I am just super busy trying to sort out my life, my purpose, my meaning, post-strokes. He is still working 12 hours a day at a job he would rather tell to take a flyin' leap while trying to balance the rest of his life around it and stay somehow sane. He is also still more than a little bewildered, depressed and unhappy with what life has done to us the last 5 years, understandably so. As the intensity of the strokes fade further into the background of our lives and we resume the normal it is easy to get lost in the mundane struggles of everyday life. It is easy to forget the "miracle" of my complete survival and revert back to stressing and fussing over unsatisfactory situations, people or realities.
So as I was sitting in church yesterday a memory came flooding back to me from the deep recesses of my cognizance, something I had not thought about in a very long time. The details are fuzzy and unclear but the emotion I have attached to it is quite sharp. When I was still VERY sick with CFS & Fibromyalgia our lives sucked, as you all know only too well. One Sunday afternoon we decided to try out a new restaurant, Spanish & Peruvian I believe, and I found myself sitting in a hot little crowded restaurant across the table from a very angry man. He was spouting and spewing his fear all over me in the form of infuriation. I could not take it, was trying to have a rational PUBLIC argument and at one point realized I could not keep going. So I did what any business woman has been trained to do when faced with an excesses of emotion. I firmly slipped that "professional" mask on my face, swallowed my feelings deep down inside and plastered a small smile across my lips, signaling the white flag, truce. Suddenly the room started spinning and little spots danced in front of my eyes and I knew I was seconds away from passing out. But there was nowhere to pass out! The place was jam-packed so I raced to the door fainting and collapsed on the sidewalk right outside the restaurant. I came too a few moments later with my very concerned husband hoovering over me and a few waiters and street passers crowded around. I was fine, nothing came of it, I believe we even went back in and ordered and ate our food.
Why this particular memory at this exact time? I believe what it served to remind me is that this poor man has been dragging behind me while I held a vice-grip on his hand as I whipped and snapped through the hell of chronic illness. Although it has not happened to him, it has. But I am the one that has been given the time to process, heal, restore. I am the one that has taken time off work and been to a therapist and talked and bitched and moaned about every ache, pain and ailment. He's had to go out and bring home the bacon and keep our family afloat, always running, always playing second fiddle emotionally. He has had to hold himself together and stuff his feelings inside and figure out a way to get through each day while pretending he is not internally dying. We are in very different places in life right now. I am so pumped up about the success of my blog (still can't believe y'all are interested in what I have to say!) and my future as a writer and the massive awareness the Fibromyalgia Crusade is going to bring. I am living in such a faith based place, knowing I am sailing down the path I was created to fulfill. But he is not quite there with me. He is still processing, mourning, reflecting. My enthusiasm and conviction must be quite annoying! But I believe the best thing I can do for him is let him feel, be the best wife I know how and keep myself strong, healthy and focused. As my mother said to me today (once again a Mother's wisdom!), "Men are much smarter than women. They figure out on the second day they are not going to change us. Sometimes the best way to help your husband is to get out of God's way."
Thanks for joining,
Leah
So as I was sitting in church yesterday a memory came flooding back to me from the deep recesses of my cognizance, something I had not thought about in a very long time. The details are fuzzy and unclear but the emotion I have attached to it is quite sharp. When I was still VERY sick with CFS & Fibromyalgia our lives sucked, as you all know only too well. One Sunday afternoon we decided to try out a new restaurant, Spanish & Peruvian I believe, and I found myself sitting in a hot little crowded restaurant across the table from a very angry man. He was spouting and spewing his fear all over me in the form of infuriation. I could not take it, was trying to have a rational PUBLIC argument and at one point realized I could not keep going. So I did what any business woman has been trained to do when faced with an excesses of emotion. I firmly slipped that "professional" mask on my face, swallowed my feelings deep down inside and plastered a small smile across my lips, signaling the white flag, truce. Suddenly the room started spinning and little spots danced in front of my eyes and I knew I was seconds away from passing out. But there was nowhere to pass out! The place was jam-packed so I raced to the door fainting and collapsed on the sidewalk right outside the restaurant. I came too a few moments later with my very concerned husband hoovering over me and a few waiters and street passers crowded around. I was fine, nothing came of it, I believe we even went back in and ordered and ate our food.
Why this particular memory at this exact time? I believe what it served to remind me is that this poor man has been dragging behind me while I held a vice-grip on his hand as I whipped and snapped through the hell of chronic illness. Although it has not happened to him, it has. But I am the one that has been given the time to process, heal, restore. I am the one that has taken time off work and been to a therapist and talked and bitched and moaned about every ache, pain and ailment. He's had to go out and bring home the bacon and keep our family afloat, always running, always playing second fiddle emotionally. He has had to hold himself together and stuff his feelings inside and figure out a way to get through each day while pretending he is not internally dying. We are in very different places in life right now. I am so pumped up about the success of my blog (still can't believe y'all are interested in what I have to say!) and my future as a writer and the massive awareness the Fibromyalgia Crusade is going to bring. I am living in such a faith based place, knowing I am sailing down the path I was created to fulfill. But he is not quite there with me. He is still processing, mourning, reflecting. My enthusiasm and conviction must be quite annoying! But I believe the best thing I can do for him is let him feel, be the best wife I know how and keep myself strong, healthy and focused. As my mother said to me today (once again a Mother's wisdom!), "Men are much smarter than women. They figure out on the second day they are not going to change us. Sometimes the best way to help your husband is to get out of God's way."
Thanks for joining,
Leah
Sunday, September 26, 2010
Prednisone Gave Me A Mustache!
For all of you that gleaned a bit of inspiration from my blog "I Have Let Myself Go" I am so proud of you! I have been getting loads of feedback that although the effort is exhaustive, just a few bits of attention to yourself is doing your morale wonders! Tiny little attempts to feel more attractive, be it getting some cuter 'jammies to lounge around while in pain or putting on some jewelry and eyeliner and coiffing that 'do make us feel better about ourselves which in turn, over time, can only be a good thing. Ever hear that expression Dress for the job you want, not the job you have? Well lets take that and Dress for the health we want, not the health we have!
There are so many "girlie" things that have fallen out of my life since I got sick. I was a high-maintenance bitty before CFS & Fibromyalgia knocked my socks off. I was working non-stop and although I did not have the extra cash to spend on expensive beauty treatments, spent it anyway! I went to a top salon in San Francisco 4x a year to get Baliage, my hairdresser specially trained in France on the exclusive art of free-handed highlights, at $200 a pop. Let's not even talk about what the haircut cost. I always had my acrylic manicure buffed and polished, each month faithfully made my trip to the wax lady for eyebrow shaping and Brazilian bikini torture. Pedicures were a way of life as I relaxed and allowed my feet to be buffed, massaged and polished to prettiness. I used self-tanners and went to the tanning salon (I know, I know) religiously to keep a healthy glow the overcast and dreary days of San Francisco did not organically provide. Oh I did it all, and I looked good! The first thing to go was the hair color. That last appointment I made and canceled 4x, knowing I did not have the money but having a really hard time going back to the do-it-yourself bottle. Then I started doing the acrylics myself, using up hours of time and destroying my cuticles as I tried to file all the lumps and bumps to smooth. Self-pedicures were torture on my back but I had no choice. I was not going to walk around with Boomerang neglected feet, telling the world I did not pay attention to myself! Shaving and plucking replaced the waxing and the tone of my skin became less important as I wallowed in ill health and woe-is-me.
It has been years now and I have come to terms and accepted that the luxury of salon treatments are not part of the gig. Maybe one day, but I actually like the do-it-yourself approach! I bottle my blonde every 3 weeks, pedicure every 2, shave and pluck regularly and live in Arizona now so sunshine habitually keeps me glowing. I file and polish my natural nails while watching TV and think I am doing a pretty good job at keeping up appearances. It is quick and easy and gets the job done. But over the last few days while I was putting on my makeup I noticed my upper lip looked fuzzy, a little dark. Last night I whipped out my do-it-yourself wax strips and flipped on the magnifying mirror. OH MY GOD I HAD A BONA FIDE MUSTACHE! It was long and dark and, well what more can I say, long and dark! I have been warned of the side-effects of Prednisone, the many others that accompany the racing-manic-panic I have been running around in. Facial hair, acne, a vacuum hose for a mouth (weight gain), chipmunk cheeks (oh we all know I have those!), mood-swings, 'roid rage, candida and a stomping on my immune system. But a mustache! So you betcha' I ripped that hair right off my face and then proceeded to scrutinize every inch of the surface of my skin at scarily-magnified close range. Oh the wrinkles, oh the discolorations! No good can come from looking at yourself that close. So as the Fibromyalgia pain Prednisone was gloriously masking slowly returns and my manic calms ever so slightly I realize how hard this has been on my body. The pain from my Sacroiliac Joint Dysfunction has returned with a loud roaring vengeance. I enjoyed, really enjoyed the hiatus from Fibromyalgia Prednisone allowed, but there is something so familiar, so normal about feeling pain again. That I can deal with, but all these other side-effects have been torturous to me and I am actually anticipating switching out one for the other.
Thanks for joining,
Leah
There are so many "girlie" things that have fallen out of my life since I got sick. I was a high-maintenance bitty before CFS & Fibromyalgia knocked my socks off. I was working non-stop and although I did not have the extra cash to spend on expensive beauty treatments, spent it anyway! I went to a top salon in San Francisco 4x a year to get Baliage, my hairdresser specially trained in France on the exclusive art of free-handed highlights, at $200 a pop. Let's not even talk about what the haircut cost. I always had my acrylic manicure buffed and polished, each month faithfully made my trip to the wax lady for eyebrow shaping and Brazilian bikini torture. Pedicures were a way of life as I relaxed and allowed my feet to be buffed, massaged and polished to prettiness. I used self-tanners and went to the tanning salon (I know, I know) religiously to keep a healthy glow the overcast and dreary days of San Francisco did not organically provide. Oh I did it all, and I looked good! The first thing to go was the hair color. That last appointment I made and canceled 4x, knowing I did not have the money but having a really hard time going back to the do-it-yourself bottle. Then I started doing the acrylics myself, using up hours of time and destroying my cuticles as I tried to file all the lumps and bumps to smooth. Self-pedicures were torture on my back but I had no choice. I was not going to walk around with Boomerang neglected feet, telling the world I did not pay attention to myself! Shaving and plucking replaced the waxing and the tone of my skin became less important as I wallowed in ill health and woe-is-me.
It has been years now and I have come to terms and accepted that the luxury of salon treatments are not part of the gig. Maybe one day, but I actually like the do-it-yourself approach! I bottle my blonde every 3 weeks, pedicure every 2, shave and pluck regularly and live in Arizona now so sunshine habitually keeps me glowing. I file and polish my natural nails while watching TV and think I am doing a pretty good job at keeping up appearances. It is quick and easy and gets the job done. But over the last few days while I was putting on my makeup I noticed my upper lip looked fuzzy, a little dark. Last night I whipped out my do-it-yourself wax strips and flipped on the magnifying mirror. OH MY GOD I HAD A BONA FIDE MUSTACHE! It was long and dark and, well what more can I say, long and dark! I have been warned of the side-effects of Prednisone, the many others that accompany the racing-manic-panic I have been running around in. Facial hair, acne, a vacuum hose for a mouth (weight gain), chipmunk cheeks (oh we all know I have those!), mood-swings, 'roid rage, candida and a stomping on my immune system. But a mustache! So you betcha' I ripped that hair right off my face and then proceeded to scrutinize every inch of the surface of my skin at scarily-magnified close range. Oh the wrinkles, oh the discolorations! No good can come from looking at yourself that close. So as the Fibromyalgia pain Prednisone was gloriously masking slowly returns and my manic calms ever so slightly I realize how hard this has been on my body. The pain from my Sacroiliac Joint Dysfunction has returned with a loud roaring vengeance. I enjoyed, really enjoyed the hiatus from Fibromyalgia Prednisone allowed, but there is something so familiar, so normal about feeling pain again. That I can deal with, but all these other side-effects have been torturous to me and I am actually anticipating switching out one for the other.
Thanks for joining,
Leah
Saturday, September 25, 2010
Love Child
I am a "Love Child" in the truest sense of the word. When I first heard Diana Ross wailing out that tune I quickly downloaded it for my cell-phone ring tone. It was perfectly poignant for the phase of reflection I was going through in my life and gave me a constant reminder of my unique and eccentric origins.
Picture it: Venice Beach, California, 1975. A guitar player and singer in a garage-meets-lounge band fall in love. The singer was a college drop-out Mid-West transplant seeking fame and fortune in the bright lights of big city L.A. The guitar player was your average San Fernando Valley hippie experiencing the unravel of the counter-culture movement while traveling around the country in a van with his band. They were busy living their youth and dreaming their dreams. Neither of them were stable, settled or mature enough to begin a family, but other plans were in store for them... The singer finds herself pregnant, 23, unmarried and half-a-country away from home. Buying into the Women's Lib movement of the day she is determined to "have it all" and refuses the guitar players marriage proposal. Underneath the long hair, bushy mustache and faded bell bottoms was a man raised by a good family with traditional values willing to take responsibility for his responsibility. They move in, set up house and spend 3 days hosting a "home birth party" before finally giving in and going to the hospital to deliver their perfectly healthy (at that time) baby girl. A few months later the singer asks her baby daddy to marry her and the day after Christmas in 1976, in his Mom and Dad's backyard, with a 4 month old on their hips, they do. The marriage is fueled by passion and drama and lasts 2 years before both move on to other phases in life, each with 1 hand of that toddler tightly entwined in their own.
They marry others, co-parent successfully and give me the best possible life they were capable of. I never doubted that I was loved and extremely important to both of them. They both made many sacrifices along the way and I am so grateful for who they are. But my upbringing was emotionally tumultuous and fraught with much confusion. I was a bright, temperamental and intuitive child that viscerally felt each experience in life with acute comprehension. I grew up to be an uber-intense, type-A, perfectionistic, controlling and intelligent under-achiever with a bad temper prone to throwing tantrums! I flew through my teen years in a blur of self-medication and boundary bashing, causing endless amounts of heartache to my poor parents. Somehow I made my way to college and managed to straighten out a bit, actually graduating in 5 years, no small miracle. I set out on adulthood in a blaze of glory, battling Major Depression as I attempted to find out who Leah is and define myself as an adult. Not who she had been taught to be, told to be or shown to be. I spent 3 intense years in therapy deconstructing myself and my self-annihilative habits. I learned that so many of my choices were a reaction to my past and that knowing how to parent my inner-child was not something I had been taught how to do. I learned the beautiful necessity of setting limits and making better choices for a better outcome. I thank God for the opportunity to have worked through the garbage of my past, for in 2005 when I got sick, the skills I learned during my Age Of Enlightenment got me through the devastation of my life.
How much of my emotional past contributed to my medical problems? How can I even begin to say one has nothing to do with the other? Major Depressive Disorder and a long-standing sleep disturbance suppressed my immune system and my genetic Hypertriglyceridemia caused Pancreatitis. I was just a sitting duck from there. CFS (Viral Induced Central Nervous System Dysfunction), Fibromyalgia, TMJ, Cervical Kyphosis, Degenerative Disc Disease, Sacroiliac Joint Dysfunction, a fractured skull base, and finally RCVS (the strokes) have wound their way into my body and tried to snake their slithery selves around my life. But my parents raised a fighter. In playing the role of parent when I was the child and knowing an instability and vulnerability children should not have to see, I gleaned the aptitude necessary to make it through every health trauma life has thrown at me. I am a fighter, a survivor, and I fought back harder and stronger every time and as long as the good Lord allows breath in my body, will continue to win.
Thanks for joining,
Leah
Picture it: Venice Beach, California, 1975. A guitar player and singer in a garage-meets-lounge band fall in love. The singer was a college drop-out Mid-West transplant seeking fame and fortune in the bright lights of big city L.A. The guitar player was your average San Fernando Valley hippie experiencing the unravel of the counter-culture movement while traveling around the country in a van with his band. They were busy living their youth and dreaming their dreams. Neither of them were stable, settled or mature enough to begin a family, but other plans were in store for them... The singer finds herself pregnant, 23, unmarried and half-a-country away from home. Buying into the Women's Lib movement of the day she is determined to "have it all" and refuses the guitar players marriage proposal. Underneath the long hair, bushy mustache and faded bell bottoms was a man raised by a good family with traditional values willing to take responsibility for his responsibility. They move in, set up house and spend 3 days hosting a "home birth party" before finally giving in and going to the hospital to deliver their perfectly healthy (at that time) baby girl. A few months later the singer asks her baby daddy to marry her and the day after Christmas in 1976, in his Mom and Dad's backyard, with a 4 month old on their hips, they do. The marriage is fueled by passion and drama and lasts 2 years before both move on to other phases in life, each with 1 hand of that toddler tightly entwined in their own.
They marry others, co-parent successfully and give me the best possible life they were capable of. I never doubted that I was loved and extremely important to both of them. They both made many sacrifices along the way and I am so grateful for who they are. But my upbringing was emotionally tumultuous and fraught with much confusion. I was a bright, temperamental and intuitive child that viscerally felt each experience in life with acute comprehension. I grew up to be an uber-intense, type-A, perfectionistic, controlling and intelligent under-achiever with a bad temper prone to throwing tantrums! I flew through my teen years in a blur of self-medication and boundary bashing, causing endless amounts of heartache to my poor parents. Somehow I made my way to college and managed to straighten out a bit, actually graduating in 5 years, no small miracle. I set out on adulthood in a blaze of glory, battling Major Depression as I attempted to find out who Leah is and define myself as an adult. Not who she had been taught to be, told to be or shown to be. I spent 3 intense years in therapy deconstructing myself and my self-annihilative habits. I learned that so many of my choices were a reaction to my past and that knowing how to parent my inner-child was not something I had been taught how to do. I learned the beautiful necessity of setting limits and making better choices for a better outcome. I thank God for the opportunity to have worked through the garbage of my past, for in 2005 when I got sick, the skills I learned during my Age Of Enlightenment got me through the devastation of my life.
How much of my emotional past contributed to my medical problems? How can I even begin to say one has nothing to do with the other? Major Depressive Disorder and a long-standing sleep disturbance suppressed my immune system and my genetic Hypertriglyceridemia caused Pancreatitis. I was just a sitting duck from there. CFS (Viral Induced Central Nervous System Dysfunction), Fibromyalgia, TMJ, Cervical Kyphosis, Degenerative Disc Disease, Sacroiliac Joint Dysfunction, a fractured skull base, and finally RCVS (the strokes) have wound their way into my body and tried to snake their slithery selves around my life. But my parents raised a fighter. In playing the role of parent when I was the child and knowing an instability and vulnerability children should not have to see, I gleaned the aptitude necessary to make it through every health trauma life has thrown at me. I am a fighter, a survivor, and I fought back harder and stronger every time and as long as the good Lord allows breath in my body, will continue to win.
Thanks for joining,
Leah
Friday, September 24, 2010
A Reason To Leap Out Of Bed In The Morning
I have heard it said that you will never work as hard as when you are starting your own business. The job that was once a grueling and mandatory part of your day becomes an obsession as you pour every ounce of yourself into nurturing and developing your baby, your dream, your ambition. Well I can tell you I am experiencing that for the first time ever and it is so true. YOU, my readers, have given it to me! You have given me confidence and feedback and laughter and heartache and stimulating thoughts and conversations and most importantly a purpose. If you read my earlier blogs, pre-strokes blogs, you will constantly see me bitching about how unmotivated I was. How I was dreaming of an enthusiasm that would cause me to LEAP out of bed in the morning, ready to tackle whatever challenges were ahead of me. Excited and optimistic and full of life and energy, I needed something to grab my heart and pull me out of whatever physical malady was at the top of the list for that day, overriding the pain and sadness and frustration that is living a life compromised by Fibromyalgia.
I am beginning to look at the strokes as a BIG FAT BLESSING! As strange as that may sound, what has happened in my life in the last 2 months is astounding. So grateful to have survived such a horrible scare intact I surrendered myself to my God and literally meditatively prayed "I submit to your will, please use me for your glory" over and over and over again. It would calm my fear and anxiety and put my focus back into perspective. Life ceased to be about Leah and what she wanted, what I thought was important or the next step in rebuilding my life. And the loss in the beginning hurt. I went from setting aside my plans of pursuing a Masters Degree to dropping English Lit and Spanish 2 to dropping Spanish Conversation 1, abandoning school entirely. I retired from my 10 year career as a makeup artist and resigned myself to sit at home and focus on my recovery and live in financial faith. For the miracle that I was even alive was not lost on either my husband or myself, and I truly believed my life was spared for a reason and was not willing to squander that gift.
And then all of a sudden Chronicles Of Fibromyalgia caught on fire. My Facebook page became a nutty-zany place for fellow-fibrates to find a place of recluse, commune with others, get some answers, a little laughter and simply not feel so alone. Each comment I get that my writing has touched someone in some small way beckons me further into my cause. The wilted petals of the flower surrounding my life peeled back and fell away and what is sitting in the center, having been hidden all these years, is simply beautiful. I am gearing up to lead a crusade to change the way Fibromyalgia patients are treated and understood. I am a strong and clear voice for many that have lost theirs and simply don't know where to begin to find it. I also hope to give those that are mad as hell but have no idea where or how to start the battle a little faith in knowing a huge number of us are arming up to defend ourselves. Yes, I am right where I am supposed to be. By opening myself up to being used and releasing my control over my life I have blessed others that have in turn blessed me. So thank you, all of you beautiful souls that have come into my life in the last few months. I now open my eyes in the morning, call my husband to tell him I am alive (new rule post-strokes), throw on my clothes and charge out the door to walk the puppies, anxious to come home and stretch so I can jump on the computer and see where today will lead me...
Thanks for joining,
Leah
I am beginning to look at the strokes as a BIG FAT BLESSING! As strange as that may sound, what has happened in my life in the last 2 months is astounding. So grateful to have survived such a horrible scare intact I surrendered myself to my God and literally meditatively prayed "I submit to your will, please use me for your glory" over and over and over again. It would calm my fear and anxiety and put my focus back into perspective. Life ceased to be about Leah and what she wanted, what I thought was important or the next step in rebuilding my life. And the loss in the beginning hurt. I went from setting aside my plans of pursuing a Masters Degree to dropping English Lit and Spanish 2 to dropping Spanish Conversation 1, abandoning school entirely. I retired from my 10 year career as a makeup artist and resigned myself to sit at home and focus on my recovery and live in financial faith. For the miracle that I was even alive was not lost on either my husband or myself, and I truly believed my life was spared for a reason and was not willing to squander that gift.
And then all of a sudden Chronicles Of Fibromyalgia caught on fire. My Facebook page became a nutty-zany place for fellow-fibrates to find a place of recluse, commune with others, get some answers, a little laughter and simply not feel so alone. Each comment I get that my writing has touched someone in some small way beckons me further into my cause. The wilted petals of the flower surrounding my life peeled back and fell away and what is sitting in the center, having been hidden all these years, is simply beautiful. I am gearing up to lead a crusade to change the way Fibromyalgia patients are treated and understood. I am a strong and clear voice for many that have lost theirs and simply don't know where to begin to find it. I also hope to give those that are mad as hell but have no idea where or how to start the battle a little faith in knowing a huge number of us are arming up to defend ourselves. Yes, I am right where I am supposed to be. By opening myself up to being used and releasing my control over my life I have blessed others that have in turn blessed me. So thank you, all of you beautiful souls that have come into my life in the last few months. I now open my eyes in the morning, call my husband to tell him I am alive (new rule post-strokes), throw on my clothes and charge out the door to walk the puppies, anxious to come home and stretch so I can jump on the computer and see where today will lead me...
Thanks for joining,
Leah
Thursday, September 23, 2010
The Fibromyalgia Life Cycle
Fibromyalgia has come a long way since I was diagnosed in 2006. The FDA approved Lyrica a year later and overnight it went from "being in your head" to a real condition...for some medical professionals. Not all jumped on the bandwagon because there is still no definitive test to confirm diagnosis, but it was mildly legitimized. At least there was a sector that believed us, that we were hurting, throbbing, on fire inside, crushing ourselves as we walked, not just crazy or lazy or wimpy. Then along came Cymbalta in 2008 and we were given another win, another "option" in managing raging invisible pain. Savella came along last year and has rounded out modern medicines attempt to give us our lives back. For some these drugs have worked wonders, for others they have caused disaster. For many it lies somewhere in between, but at least the word Fibromyalgia has some sort of an association to the general public. When I tell someone I have Fibromyalgia I say, "You know, the commercials for Lyrica?" and they usually nod their head with a vague sort of recognition, not at all getting it, but at least I don't sound like a lunatic mentioning it for the first time. But Fibromyalgia awareness has a LONG way to go.
As I have connected with hundreds of fellow-fibrates and we exchange stories, methods of management, frustrations and sorrows accompanied with this disease I have become aware of a vicious pattern, what I am calling The Fibromyalgia Life Cycle... The potential Fibromyalgia has to completely destroy a person and take down their life is astounding. Time and time again my heart bleeds as I listen to tales of broken marriages, lost jobs, degrading doctors and denied disability claims. These patients suffer body-wracking pain while they watch their lives flush down the toilet, barely able to get out of bed and do anything about it.
This is the pattern of the worst case scenario, what happens all too often to entirely too many people:
1. A person gets sick, develops horrible pain and it does not go away.
2. They go to the doctor who runs a bunch of tests and tells them they are just fine, nothing is wrong. If they are lucky the doctor believes them and offers them some drug or another to help with the pain.
3. The pain, fatigue and insomnia progress to the point that its all-consuming. Living life as it was before is just not possible and personal relationships begin to suffer, some are even lost as their significant others flee the insanity of a very sick person given very little help getting better. Many refuse to believe or understand the incredible pain and push it off as the patient's fault or a mental problem. The ability to parent their children, maintain relationships and friendships or exist as a normal person dwindles down to nothing.
4. The capacity to do their job is compromised as more and more days of work are missed and important information "forgotten" in the file of fibro-fog.
5. The job is gone, and the health insurance goes with it. Now living on unemployment or disability (if they are lucky enough to have that) and Medicare, all the while the disease progresses and makes life damn near unlivable!
6. SSI Disability claims are repetitively denied due to there being no firm, clinical test to "diagnose" Fibromyalgia and the full impact it has on a persons ability to function or doctors to support the depth of destruction this disease holds over a persons life.
7. Left horribly sick with poor medical options and no income, one better hope someone is still around to offer some support and let them move in...
And there you have it, the 7 steps to hell! Now many are fortunate enough to have some support network, personal fight, success with medications or alternative treatments or income to stop this destructive cycle in its tracks. But the point I am trying to make is that this can happen and does happen all too often. This is why I believe my strokes were the paddles to my heart to wake me up and open my eyes to how incredibly lucky I am to have survived Fibromyalgia. I am making it my personal mission to lead the charge to change the reality of living with this disease for up to 6 million of us in the USA alone. Way too many still discredit this disease and it is time for this to stop! Science is tick-tocking at a snails pace in figuring out what Fibromyalgia really is or how to cure it, if possible, or treat it at least. We all know it will not kill you, just make you want to kill yourself. So stay strong fellow-fibrates! We are going to change the face of living with this disease. Hold your head high, nurture your aching body and run away from naysayers and doubters as fast as you can...because a revolution is brewing...The Fibromyalgia Crusade is on its way!
Thanks for joining,
Leah
As I have connected with hundreds of fellow-fibrates and we exchange stories, methods of management, frustrations and sorrows accompanied with this disease I have become aware of a vicious pattern, what I am calling The Fibromyalgia Life Cycle... The potential Fibromyalgia has to completely destroy a person and take down their life is astounding. Time and time again my heart bleeds as I listen to tales of broken marriages, lost jobs, degrading doctors and denied disability claims. These patients suffer body-wracking pain while they watch their lives flush down the toilet, barely able to get out of bed and do anything about it.
This is the pattern of the worst case scenario, what happens all too often to entirely too many people:
1. A person gets sick, develops horrible pain and it does not go away.
2. They go to the doctor who runs a bunch of tests and tells them they are just fine, nothing is wrong. If they are lucky the doctor believes them and offers them some drug or another to help with the pain.
3. The pain, fatigue and insomnia progress to the point that its all-consuming. Living life as it was before is just not possible and personal relationships begin to suffer, some are even lost as their significant others flee the insanity of a very sick person given very little help getting better. Many refuse to believe or understand the incredible pain and push it off as the patient's fault or a mental problem. The ability to parent their children, maintain relationships and friendships or exist as a normal person dwindles down to nothing.
4. The capacity to do their job is compromised as more and more days of work are missed and important information "forgotten" in the file of fibro-fog.
5. The job is gone, and the health insurance goes with it. Now living on unemployment or disability (if they are lucky enough to have that) and Medicare, all the while the disease progresses and makes life damn near unlivable!
6. SSI Disability claims are repetitively denied due to there being no firm, clinical test to "diagnose" Fibromyalgia and the full impact it has on a persons ability to function or doctors to support the depth of destruction this disease holds over a persons life.
7. Left horribly sick with poor medical options and no income, one better hope someone is still around to offer some support and let them move in...
And there you have it, the 7 steps to hell! Now many are fortunate enough to have some support network, personal fight, success with medications or alternative treatments or income to stop this destructive cycle in its tracks. But the point I am trying to make is that this can happen and does happen all too often. This is why I believe my strokes were the paddles to my heart to wake me up and open my eyes to how incredibly lucky I am to have survived Fibromyalgia. I am making it my personal mission to lead the charge to change the reality of living with this disease for up to 6 million of us in the USA alone. Way too many still discredit this disease and it is time for this to stop! Science is tick-tocking at a snails pace in figuring out what Fibromyalgia really is or how to cure it, if possible, or treat it at least. We all know it will not kill you, just make you want to kill yourself. So stay strong fellow-fibrates! We are going to change the face of living with this disease. Hold your head high, nurture your aching body and run away from naysayers and doubters as fast as you can...because a revolution is brewing...The Fibromyalgia Crusade is on its way!
Thanks for joining,
Leah
Wednesday, September 22, 2010
I Have Let Myself Go
I gave my husband a handy-dandy new techno-fab phone for his birthday last week that he is quite enamored with. He was playing with the camera last night and took some pictures of me...and when I saw them I started crying! I LOOK AWFUL! My face looks like a pasty-puffy round basketball, my blonde hair blending into the illusion, providing no contrast, no definition. I have LUGGAGE packed and ready to go for a month in Europe under my eyes and wish my chins stopped at double. Everyone tells me this is what Prednisone does to you, it's water weight, chipmunk cheeks, you look fine, don't worry. But I am worried! Horrified, embarrassed and really really mad! I have only gained back the 10 lbs. I lost in the hospital at the end of July but my face looks like it did when I was 30 lbs. heavier on Lyrica. I can blame some of this on the steroids, but have to take responsibility for my part as well. I have been eating. A lot. My portions are BIG, I eat for pure enjoyment, not a thought to calorie or consequence and I could visit Yogurtland daily, no problem. Oh yes, I am definitely contributing heavily to this weight gain. I have 2 choices here, keep it up and wind up HUGE at the end of the 4 months of treatment or take control of the situation NOW and fight the urge to stuff my face so I don't have such a big mountain to climb when I am finally off my hated-yet-needed-to-stay-alive-drug.
It is so important to feel confident in your appearance. Us Fibro's often hear "But you don't look sick!" and cringe at the unfairness of it all. Glad we don't look as bad as we feel, we are often imprisoned in a painful cell shrouded with ivy and roses. This is one of the reasons Fibromyalgia is so dismissed. But eventually this disease takes its toll on the outside as well. As we enter deep levels of sleep deprivation, fall victim to the side-effects of the many drugs, lose our ability to exercise and set our faces in a permanent frown-meets-grimace reflecting the hurt on the inside, we become shadows of our former selves. It is easy to stop caring about what is reflecting back in the mirror. It is hard to take pride in the effort and energy it takes to primp and fluff oneself up when there is simply no energy to spare. It seems like a waste to slather on makeup or coif your hair just to sit at home alone and feel miserable. But the reality of the situation is that as Fibromyalgia shreds us apart on the inside we are accepting it that much more by not fighting back on the outside. Think back to a time before you got sick (for some a lifetime ago) and had something like a common flu. After a couple of days of misery in bed-sweats and sleep-delirium the fever would break and you would drag your weak-but-feeling-somewhat-improved self into the shower. That action alone made you feel better, and on the road to recovery you were...
I have been home from hospitalization for the strokes almost 2 months now and am realizing I am falling into this trap again. I rarely wear makeup, throw on comfie "slipper clothes" every day and pay little attention to who is looking back at me in the mirror. Yesterday was a big wake-up call. If I want to be sick then I can live looking sick, but if I want to improve I must project that desire on the outside of my body, the 1 place I can actually control what is going on. So I may have a face as round as a basketball but damn it if I don't have a little blush and eyeliner on to balance out the puffiness. I may be bloated and hurting and have not 1 bit of energy to spare but garsh darn it, I am putting on jeans instead of sweats and brushing my hair! I am determined to look in the mirror and see a person that still, despite all the hardship, cares who is looking back at her.
Thanks for joining,
Leah
It is so important to feel confident in your appearance. Us Fibro's often hear "But you don't look sick!" and cringe at the unfairness of it all. Glad we don't look as bad as we feel, we are often imprisoned in a painful cell shrouded with ivy and roses. This is one of the reasons Fibromyalgia is so dismissed. But eventually this disease takes its toll on the outside as well. As we enter deep levels of sleep deprivation, fall victim to the side-effects of the many drugs, lose our ability to exercise and set our faces in a permanent frown-meets-grimace reflecting the hurt on the inside, we become shadows of our former selves. It is easy to stop caring about what is reflecting back in the mirror. It is hard to take pride in the effort and energy it takes to primp and fluff oneself up when there is simply no energy to spare. It seems like a waste to slather on makeup or coif your hair just to sit at home alone and feel miserable. But the reality of the situation is that as Fibromyalgia shreds us apart on the inside we are accepting it that much more by not fighting back on the outside. Think back to a time before you got sick (for some a lifetime ago) and had something like a common flu. After a couple of days of misery in bed-sweats and sleep-delirium the fever would break and you would drag your weak-but-feeling-somewhat-improved self into the shower. That action alone made you feel better, and on the road to recovery you were...
I have been home from hospitalization for the strokes almost 2 months now and am realizing I am falling into this trap again. I rarely wear makeup, throw on comfie "slipper clothes" every day and pay little attention to who is looking back at me in the mirror. Yesterday was a big wake-up call. If I want to be sick then I can live looking sick, but if I want to improve I must project that desire on the outside of my body, the 1 place I can actually control what is going on. So I may have a face as round as a basketball but damn it if I don't have a little blush and eyeliner on to balance out the puffiness. I may be bloated and hurting and have not 1 bit of energy to spare but garsh darn it, I am putting on jeans instead of sweats and brushing my hair! I am determined to look in the mirror and see a person that still, despite all the hardship, cares who is looking back at her.
Thanks for joining,
Leah
Tuesday, September 21, 2010
Routine vs. The Rebel
Focus vs. forgiveness, progress vs. permission, action vs. acceptance... These are the virtues I struggle to balance daily. As a Fibromyalgia patient I must make certain concessions, accept certain limits that I did not have before I became ill. Balancing all the components of my life is not only necessary, but CRITICAL to remaining "managed", meaning I have more control over my life than Fibromyalgia does. I must get my sleep, daily exercise, eat a healthy diet, manage my stress, and listen to my body and take it easy when something feels out of sorts, knowing it's either those wacky hormonal fluctuations or a flare-up sneaking up on me. I must pay attention to my mood and pain levels because those days I wake up READY TO TAKE A SHOTGUN TO THE WORLD for no good reason usually precipitate said set-backs. If I pay attention, cocoon myself and catch it early, I can usually save myself days of misery. I must treat myself well, with kindness and compassion, for no one else will if I don't do it first.
But then 28 habitual years of the leo-type-A-overachiever-OCD-perfectionist kicks in and wants some darn progress out of life! She wants to move forward to bigger and better things, actualize the greatness life is waiting to manifest, lead the charge and make it happen...hence the struggle to meld the dichotomy of routine vs. the rebel is born. I crave routine, enjoy the turtle-paced progress of life when I know what to expect and what I need to do to make it happen. I like my plate to be on the light-side of full, a variety of the small and colorful portions of life. But I am so easily distracted...thrown off course after a couple of days of boring and predictable routine. I am also incredibly gifted at coming up with excuses...reasons to indulge my whims and not stay on track. I suppose this all goes back to a discipline issue.
Now that Prednisone (my nemesis) has been thrown into the mix life is all the more intense! This must be the yang to my many years of CFS & Fibromyalgia yin, where I sat around the house too sick to actually do anything. An attempt for my life to balance itself out, perhaps? I am not going to bed at a reasonable hour, starting my day off late, racing around never really getting anything done, just 500 things barely started! I feel that the second I get up in the morning someone takes a clock and chucks it far out in front of me and I spend the rest of the day racing to catch up with it, tripping and stumbling into pot-holes and snarled brush along the way. If I see something that needs to be picked up and put away it becomes THE MOST IMPORTANT THING IN THE WORLD TO DO RIGHT NOW!
When did I become this ubber-uptight ninny that flips out at the slightest lack of control? I am so incredibly bitchy and have forgotten how to laugh, let things roll off my back, see the poetic humor in all things both good and bad. I am taking myself way too seriously! By the time my husband comes home from work I am a wreck...dinner not made, the house an explosion, puppies ignored...oh you all get it better than anyone, I needn't go on and on. But when I fall apart, he falls apart and then our life falls apart, making it that much more work to get back on track! This is a particularity formidable time in my life. I have a lot going on both personally and professionally, am attempting to not balloon up on steroids (and doing a horrible job I might add), manage a chronic illness that still requires a significant amount of effort to keep in its proper place (stomped under my stilettoed heel) and marveling at the reality that I just survived 2 strokes at age 33! I am attempting to stay calm and focused on my greater purpose and glean my strength and peace through God, not wig out on a Prednisone tail-spin...Woo-hoo my plate is full, and its overflowing with greasy, fried, fattening foods that are leaving me a miserable, bloated mess at the end of the day. As we speak I am confined to my bed with my husband snoring softly next to me simply because he knows if left to my own devices I will sneak in here at 2AM, starting off the next day in the same predictable downward spiral...
So I have made a few key commitments to myself, and I am going to let the rest flow from there. I am going to bed at a set time every night, chores completed well before. I am stretching every morning after I walk the pups before I get on the computer and let my day suck away. I am fixing myself up and putting on some street clothes everyday, even if I never leave the house. I must stop LIVING sick, a mess, disheveled, and putting jeans on reminds me to not eat nearly as much as when I am wearing sweats. And I am going to slow down... I may not be stronger than Prednisone, but God is. So I am taking the burden of manic off myself and turning it over to Their hands. I have a great calling on my life, to lead The Fibromyalgia Crusade and change the quality of living with this disease for all of us that suffer from it. Yet I am but 1 tiny little woman with 1 small voice. If I want to lead this charge I must humble myself and recognize where my true strength and focus lie. Amazingly enough, I feel better already!
Thanks for joining,
Leah
But then 28 habitual years of the leo-type-A-overachiever-OCD-perfectionist kicks in and wants some darn progress out of life! She wants to move forward to bigger and better things, actualize the greatness life is waiting to manifest, lead the charge and make it happen...hence the struggle to meld the dichotomy of routine vs. the rebel is born. I crave routine, enjoy the turtle-paced progress of life when I know what to expect and what I need to do to make it happen. I like my plate to be on the light-side of full, a variety of the small and colorful portions of life. But I am so easily distracted...thrown off course after a couple of days of boring and predictable routine. I am also incredibly gifted at coming up with excuses...reasons to indulge my whims and not stay on track. I suppose this all goes back to a discipline issue.
Now that Prednisone (my nemesis) has been thrown into the mix life is all the more intense! This must be the yang to my many years of CFS & Fibromyalgia yin, where I sat around the house too sick to actually do anything. An attempt for my life to balance itself out, perhaps? I am not going to bed at a reasonable hour, starting my day off late, racing around never really getting anything done, just 500 things barely started! I feel that the second I get up in the morning someone takes a clock and chucks it far out in front of me and I spend the rest of the day racing to catch up with it, tripping and stumbling into pot-holes and snarled brush along the way. If I see something that needs to be picked up and put away it becomes THE MOST IMPORTANT THING IN THE WORLD TO DO RIGHT NOW!
When did I become this ubber-uptight ninny that flips out at the slightest lack of control? I am so incredibly bitchy and have forgotten how to laugh, let things roll off my back, see the poetic humor in all things both good and bad. I am taking myself way too seriously! By the time my husband comes home from work I am a wreck...dinner not made, the house an explosion, puppies ignored...oh you all get it better than anyone, I needn't go on and on. But when I fall apart, he falls apart and then our life falls apart, making it that much more work to get back on track! This is a particularity formidable time in my life. I have a lot going on both personally and professionally, am attempting to not balloon up on steroids (and doing a horrible job I might add), manage a chronic illness that still requires a significant amount of effort to keep in its proper place (stomped under my stilettoed heel) and marveling at the reality that I just survived 2 strokes at age 33! I am attempting to stay calm and focused on my greater purpose and glean my strength and peace through God, not wig out on a Prednisone tail-spin...Woo-hoo my plate is full, and its overflowing with greasy, fried, fattening foods that are leaving me a miserable, bloated mess at the end of the day. As we speak I am confined to my bed with my husband snoring softly next to me simply because he knows if left to my own devices I will sneak in here at 2AM, starting off the next day in the same predictable downward spiral...
So I have made a few key commitments to myself, and I am going to let the rest flow from there. I am going to bed at a set time every night, chores completed well before. I am stretching every morning after I walk the pups before I get on the computer and let my day suck away. I am fixing myself up and putting on some street clothes everyday, even if I never leave the house. I must stop LIVING sick, a mess, disheveled, and putting jeans on reminds me to not eat nearly as much as when I am wearing sweats. And I am going to slow down... I may not be stronger than Prednisone, but God is. So I am taking the burden of manic off myself and turning it over to Their hands. I have a great calling on my life, to lead The Fibromyalgia Crusade and change the quality of living with this disease for all of us that suffer from it. Yet I am but 1 tiny little woman with 1 small voice. If I want to lead this charge I must humble myself and recognize where my true strength and focus lie. Amazingly enough, I feel better already!
Thanks for joining,
Leah
Sunday, September 19, 2010
Major Brainstorming Going On
I am very excited to report The Fibromyalgia Crusade* (see below for definition) is taking shape over here. I have identified our key points, platform and positions and am working diligently on perfecting them before I roll it out to you. Such a misunderstood and diverse syndrome as Fibromyalgia is hard to define, unite and mobilize, but we are going to do it! 2 major points of difference between The Fibromyalgia Crusade and other awareness campaigns are ACCEPTANCE and UNITY. Acceptance of our differences in symptoms, severity, treatment, management and even core beliefs surrounding the cause of the condition itself. And unity in that through this acceptance we are going to stand as a collective patient body and demand the world take us seriously! We cannot achieve either of these in the current state we exist in. Quite frankly we are a mess, our own worst enemy in fact! Disorganized and judgmental, smug and uncompassionate towards others that express different opinions, methods, symptoms or levels of recovery. Die-hards that believe if something worked for them, it is going to work for everyone. Sufferers that believe if someone has recovered or is managed then they must not really have had it in the first place. But this is not a one-size-fits-all illness, folks! What I see time and time again is each person feeling so alone and desperate that we have internalized the struggle and can only see it from our own limited and pain-filled perspective. But we are not alone, there are 2-6 million of us just in the USA! We have created so much dissent among ourselves (through no malicious intention of our own) it's no wonder we are doubted and not taken seriously!
The Art of War by Sun Tzu is one of the oldest and most successful books on military strategy ever written. Dating back to China during the 6th century BC, its concepts are still widely used today in business and political theory. One chapter addresses causing division among your opponent. If you can create in-fighting you never have a need to go to war, your opponent is so busy fighting amongst themselves you have already won! Sadly this is what is happening with us, Fibro-friends. But I believe with a change in mentality we can rise above this and focus on the true enemy. Doubt and disbelief are our real opponents, and they enter our camp and infest and spread dissent among us. Dissent so strong that we cannot even begin to come together as a collective and arm ourselves to change the reality of living life with Fibromyalgia, whatever that may mean to each person who has been given that vague and muddled diagnosis of exclusion. What I am proposing is not easy and requires an opening of the heart, mind and soul. It challenges whatever comfort zone we have created as a way to survive each day living in throbbing, shooting pain all the while required to slip into a thick coat of armor to protect ourselves as we venture into the outside world. But I am hard-pressed to find a Fibromyalgia patient that is satisfied with the knowledge, treatment, awareness, research or management modern medicine has to offer. Something has to give, and it starts with us! Stay tuned...so much more is on its way. In the meantime, search your heart and mind and see if you are ready to be but a small puzzle-piece in a huge revolution that is going to change the way each person with Fibromyalgia experiences life going forward.
I also want to take a moment to address the advertising that you now see on my blog. I have compiled links and resources that I believe in, have used myself and have worked well for me. I will never ever list a resource that I have been solely paid to endorse. In fact, I will endorse for free (Resource Links) over profit any day if I have had personal success. Your success in managing Fibromyalgia is my success. I have linked up with Swanson Vitamins, a fabulous company that supplies nutritional supplements at a fraction of retail costs. I order from them monthly and they have saved me a ton over the years. I also have linked up with ProHealth. They are an awesome company that is a bit more expensive yet specialized with the products they offer and still much cheaper than clinic or practitioner office costs. They also have oodles of research and information about Fibromyalgia on their website. If you are inclined to use these companies and click from my blog I get a couple of pennies.
When I first became sick and the failure of modern medicine's resources became blatantly obvious in offering any kind of treatment or cure or hell, even answers, the first book I picked up was From Fatigued To Fantastic. It opened up a whole new world to me. A holistic world as I now understand it; relating to or concerned with wholes or with complete systems rather than with the analysis of, treatment of, or dissection into parts.** I started viewing my body as complete in its entirety and have found my way to managed Fibromyalgia using the best of both modern & alternative medicine. That book led me to The Fibromyalgia & Fatigue Center and I would not be where I am today, managed and living life, without them. Ageless is a trip. Suzanne Somers is a trip. But she has some amazing things to say and I learned a lot from her experience. If you wait until menopause to read this book you have missed out on years of preparing your body to age gracefully, naturally. Yoga For Fibromyalgia is a gentle, adaptable way to release some tension and pain out of our too-tight muscles without overdoing it. Oh and The Shack is just a really interesting take on God minus religion as told from one man's perspective. I liked it so I linked it. Once again I get a bit of credit for those purchases if clicked from my blog, & the "Support Fibromyalgia" goodies, too. Please in no way feel obligated, I still make my husband work 14 hours-a-day to support me, I just wanted you all to know what was going on ;) And The Daily Puppy is not an add, just a daily dose of puppy!
We are all on our own journey through this life. We have our distinct challenges and individual theories and beliefs and things we are willing or not willing to try. The point of all this is not to force change or express criticism but to offer respect and compassion to each other. I share what has worked for me, but that is all I can speak to. I cannot tell someone else what will work for them. We each have to figure it out for ourselves. So research, learn, read and educate yourself as much as possible. Don't give up on the never-ending nightmare that is life with Fibromyalgia. This disease will take EVERYTHING if you let it, but be stronger and push back harder! This is your life we are talking about. And please remember to treat yourself well, for that is the first step in guiding others to do the same.
Thanks for joining,
Leah
*Definition of Crusade: Exert oneself continuously, vigorously, or obtrusively to gain an end for a certain cause or person; be an advocate for. wordnetweb.princeton.edu
**Merriam-Webster Dictionary
The Art of War by Sun Tzu is one of the oldest and most successful books on military strategy ever written. Dating back to China during the 6th century BC, its concepts are still widely used today in business and political theory. One chapter addresses causing division among your opponent. If you can create in-fighting you never have a need to go to war, your opponent is so busy fighting amongst themselves you have already won! Sadly this is what is happening with us, Fibro-friends. But I believe with a change in mentality we can rise above this and focus on the true enemy. Doubt and disbelief are our real opponents, and they enter our camp and infest and spread dissent among us. Dissent so strong that we cannot even begin to come together as a collective and arm ourselves to change the reality of living life with Fibromyalgia, whatever that may mean to each person who has been given that vague and muddled diagnosis of exclusion. What I am proposing is not easy and requires an opening of the heart, mind and soul. It challenges whatever comfort zone we have created as a way to survive each day living in throbbing, shooting pain all the while required to slip into a thick coat of armor to protect ourselves as we venture into the outside world. But I am hard-pressed to find a Fibromyalgia patient that is satisfied with the knowledge, treatment, awareness, research or management modern medicine has to offer. Something has to give, and it starts with us! Stay tuned...so much more is on its way. In the meantime, search your heart and mind and see if you are ready to be but a small puzzle-piece in a huge revolution that is going to change the way each person with Fibromyalgia experiences life going forward.
I also want to take a moment to address the advertising that you now see on my blog. I have compiled links and resources that I believe in, have used myself and have worked well for me. I will never ever list a resource that I have been solely paid to endorse. In fact, I will endorse for free (Resource Links) over profit any day if I have had personal success. Your success in managing Fibromyalgia is my success. I have linked up with Swanson Vitamins, a fabulous company that supplies nutritional supplements at a fraction of retail costs. I order from them monthly and they have saved me a ton over the years. I also have linked up with ProHealth. They are an awesome company that is a bit more expensive yet specialized with the products they offer and still much cheaper than clinic or practitioner office costs. They also have oodles of research and information about Fibromyalgia on their website. If you are inclined to use these companies and click from my blog I get a couple of pennies.
When I first became sick and the failure of modern medicine's resources became blatantly obvious in offering any kind of treatment or cure or hell, even answers, the first book I picked up was From Fatigued To Fantastic. It opened up a whole new world to me. A holistic world as I now understand it; relating to or concerned with wholes or with complete systems rather than with the analysis of, treatment of, or dissection into parts.** I started viewing my body as complete in its entirety and have found my way to managed Fibromyalgia using the best of both modern & alternative medicine. That book led me to The Fibromyalgia & Fatigue Center and I would not be where I am today, managed and living life, without them. Ageless is a trip. Suzanne Somers is a trip. But she has some amazing things to say and I learned a lot from her experience. If you wait until menopause to read this book you have missed out on years of preparing your body to age gracefully, naturally. Yoga For Fibromyalgia is a gentle, adaptable way to release some tension and pain out of our too-tight muscles without overdoing it. Oh and The Shack is just a really interesting take on God minus religion as told from one man's perspective. I liked it so I linked it. Once again I get a bit of credit for those purchases if clicked from my blog, & the "Support Fibromyalgia" goodies, too. Please in no way feel obligated, I still make my husband work 14 hours-a-day to support me, I just wanted you all to know what was going on ;) And The Daily Puppy is not an add, just a daily dose of puppy!
We are all on our own journey through this life. We have our distinct challenges and individual theories and beliefs and things we are willing or not willing to try. The point of all this is not to force change or express criticism but to offer respect and compassion to each other. I share what has worked for me, but that is all I can speak to. I cannot tell someone else what will work for them. We each have to figure it out for ourselves. So research, learn, read and educate yourself as much as possible. Don't give up on the never-ending nightmare that is life with Fibromyalgia. This disease will take EVERYTHING if you let it, but be stronger and push back harder! This is your life we are talking about. And please remember to treat yourself well, for that is the first step in guiding others to do the same.
Thanks for joining,
Leah
*Definition of Crusade: Exert oneself continuously, vigorously, or obtrusively to gain an end for a certain cause or person; be an advocate for. wordnetweb.princeton.edu
**Merriam-Webster Dictionary
Friday, September 17, 2010
Get Well With Brielle
So after that doctor appointment where I was told I needed to "figure out how to get myself better" I decided I had nothing to lose and searched my health benefits for acupuncture coverage. I had a successful experience with it following a car accident when I was 16 years-old that cured me of migraines the crash had left me with. There were no insurance benefits, per say, but a few acupuncturists had a reduced-rate they offered us policy-holders. I called 1 that was in close proximity to my house and set up an appointment. I shuffled in to said appointment a few days later in my usual pathetic fashion of that time; sweats, slippers, hair in a bun with no makeup on, late as usual, glad I had easily found a parking space right across the street. I was warmly greeted by a Caucasian female close to my age with a kind face and amazing aura of positive energy about her. Her office was serene and relaxing, full of tastefully displayed Asian decor and soft, flowing music. She quizzed me on the state of my health and then had me lie down as she probed her thin, wand-like fingers over my body, immediately zeroing in on all my "hot spots" of pain and tension. She then went to work and poked needles ALL OVER MY BODY...in my ears, feet, all my "tender" points, shoulders, back, legs, arms, neck, head, you name it, I was a human pin-cushion! Then she left me for a good 30 minutes to marinate in that state. When she came back in she flipped me over and did the same thing on the front of my body. Each needle poke was profound! As they probed and slipped into every painful, tension filled, toxic oozing bundle in my body I felt things that had been bound so tightly for so long start to release.
At one point during my trance-like-doze I heard a car alarm wailing repetitively from outside and thought to myself, "That kinda sounds like my car", but ignored the hunch because the 20 needles in my body certainly took precedent at the moment! What was I gonna do, pop up and race outside half dressed, needles protruding from my body like some voodoo-doll gone wrong? When she came in she de-needled me and gave me an intense massage, pulling tension and stress out of my now-loosened up bundles of nerves. I felt amazing! We set up a follow-up and I left feeling better than I had in years. But as I walked up and down the street I could not find my car. Clicking my key-fob and hearing nothing, it slowly dawned on me that maybe it was indeed my car that was the wailing alarm I had heard earlier. I called the police station and was informed I had parked right in front of the driveway to an apartment complex and had been towed. I HAD DONE WHAT? Talk about fibro-fog! I could have sworn that was a parking space, not a driveway. No wonder I found parking so easily! I had to WALK to the tow place and pay them something like $300 to get my car back. Oh my husband was NOT happy with me!
I kept seeing the acupuncturist, each appointment walking in feeling like I had been smacked around in a boxing ring and leaving feeling partially human again. This woman was amazing, and as we got to know each other she dared to venture places she had never gone with any other Fibromyalgia patient. One afternoon she went deep. She tapped into a "cord" that started in my upper right neck, through my shoulder blade, snaked diagonally across my mid-back and down into bad sciatica pain on my lower left side. As she popped in the needles like a trail of bread crumbs through this tension cord I could barely take in a shallow breath, the pain and constriction went SO DEEP. But after a half-hour of shallow breathing turned into full, deep breaths as the cord slowly began to relax I felt amazing! That was a big turning point in my recovery. But by far the trippiest experience I had was one afternoon when I struggled in, my female cycle leveling me to ground zero once again. I was complaining about my adrenals...they felt so slow, sluggish, blocked. So she probes her fingers around the inner part of my knee and pops the needle into my "adrenal zone". A flaming ball of FIRE shoots up my leg to my hip, back down and out my toes, and I involuntarily KICK HER! She looked at me with wide eyes and told me she felt the electricity shoot out at her through the needle, something that had never happened to her before. "Told you my adrenals were blocked", I said. That experience opened up a whole new flow in my body big time.
She is one of 4 reasons I was reluctant to leave the Bay area (the others being 2 restaurants I just can't seem to replace and best friends that have since moved anyway). She helped me so incredibly much. I had walked into her office that first day a completely different person than I was when we were packing up to move to Arizona a year later. I believe we were the right people to have the right experience together at the right time. I have been to a few other acupuncturists since then and have been sorely disappointed, didn't really even bother going back, actually. Once you have had the best its hard to settle for less. God guided me to this amazing woman at the distinct time in my life when I NEEDED her touch, her healing hands. I will forever be grateful to you, Brielle Kelly! You helped me recover in ways I never even knew were possible. Now either you need to clone yourself or get your butt out to Arizona because I miss you and could still really use you!
Thanks for joining,
Leah
At one point during my trance-like-doze I heard a car alarm wailing repetitively from outside and thought to myself, "That kinda sounds like my car", but ignored the hunch because the 20 needles in my body certainly took precedent at the moment! What was I gonna do, pop up and race outside half dressed, needles protruding from my body like some voodoo-doll gone wrong? When she came in she de-needled me and gave me an intense massage, pulling tension and stress out of my now-loosened up bundles of nerves. I felt amazing! We set up a follow-up and I left feeling better than I had in years. But as I walked up and down the street I could not find my car. Clicking my key-fob and hearing nothing, it slowly dawned on me that maybe it was indeed my car that was the wailing alarm I had heard earlier. I called the police station and was informed I had parked right in front of the driveway to an apartment complex and had been towed. I HAD DONE WHAT? Talk about fibro-fog! I could have sworn that was a parking space, not a driveway. No wonder I found parking so easily! I had to WALK to the tow place and pay them something like $300 to get my car back. Oh my husband was NOT happy with me!
I kept seeing the acupuncturist, each appointment walking in feeling like I had been smacked around in a boxing ring and leaving feeling partially human again. This woman was amazing, and as we got to know each other she dared to venture places she had never gone with any other Fibromyalgia patient. One afternoon she went deep. She tapped into a "cord" that started in my upper right neck, through my shoulder blade, snaked diagonally across my mid-back and down into bad sciatica pain on my lower left side. As she popped in the needles like a trail of bread crumbs through this tension cord I could barely take in a shallow breath, the pain and constriction went SO DEEP. But after a half-hour of shallow breathing turned into full, deep breaths as the cord slowly began to relax I felt amazing! That was a big turning point in my recovery. But by far the trippiest experience I had was one afternoon when I struggled in, my female cycle leveling me to ground zero once again. I was complaining about my adrenals...they felt so slow, sluggish, blocked. So she probes her fingers around the inner part of my knee and pops the needle into my "adrenal zone". A flaming ball of FIRE shoots up my leg to my hip, back down and out my toes, and I involuntarily KICK HER! She looked at me with wide eyes and told me she felt the electricity shoot out at her through the needle, something that had never happened to her before. "Told you my adrenals were blocked", I said. That experience opened up a whole new flow in my body big time.
She is one of 4 reasons I was reluctant to leave the Bay area (the others being 2 restaurants I just can't seem to replace and best friends that have since moved anyway). She helped me so incredibly much. I had walked into her office that first day a completely different person than I was when we were packing up to move to Arizona a year later. I believe we were the right people to have the right experience together at the right time. I have been to a few other acupuncturists since then and have been sorely disappointed, didn't really even bother going back, actually. Once you have had the best its hard to settle for less. God guided me to this amazing woman at the distinct time in my life when I NEEDED her touch, her healing hands. I will forever be grateful to you, Brielle Kelly! You helped me recover in ways I never even knew were possible. Now either you need to clone yourself or get your butt out to Arizona because I miss you and could still really use you!
Thanks for joining,
Leah
Thursday, September 16, 2010
I Quit My Job & Dropped Spanish, So Now What?
I just sent the email informing my company I can no longer work for them, retail being too demanding and stressful on this worn-out young body! I also dropped my Spanish class last week, the easy conversation class, because it was all too much. Trying to pick-up where I left off pre-strokes was simply not working. I have survived each day since coming home from the hospital marveling that I am alive and intact. The absurdity of racing around a department store slangin' lipstick or dragging my unstable Prednisone whacked self to night-class every week was not lost on me. Part of me is incredibly sad. I was making wonderful progress in managing my Fibromyalgia before the strokes; working a lot more, much more active with much less pain, defining my career goals and planning on pursuing my Masters Degree. Hell, we even rescued baby girl Porkie because the Yorkie was left alone too much and was starting to pout and make me feel oh so guilty. I had fought with all my might for years and climbed nearly 3/4 the way out of that scary, deep hole I was hurtled into when my world came crashing down around me in 2006. And then the strokes came at the tail end of July and threw me right back down that narrow, cold tunnel of darkness again. There is part of me that is pissed off but there is also part of me that knows since I have done it before, I will do it again. I will rebuild my life, and this time not simply to get back what I lost. Oh no, I believe the plans in my future are far greater then even I could have ever imagined.
Could the strokes have been a cleansing, some sort of re-birth? Somehow this time this health crisis feels different. It's as though if I sit back and allow it (and only if I truly surrender power and control over my life) there is a beautiful, soft, luminescent, radiant light lifting me up and out of the well of darkness entirely. All I know is that by the skin of my teeth and the grace of God I am alive right now, let alone not feeble in mind or body. My life was spared for a purpose much greater than just me. It is clinging to this belief that is getting me through such uncertainty. It is knowing I have reached out to others with similar health woes and have touched their lives, brought some strength, light, laughter, determination, hope or perspective to their pain and confusion. I have helped their loved ones understand a little bit more about what they are going through. I have opened up my heart and soul on the pages of this blog and have been blessed abundantly in return by each comment, each person that affirms I may have assisted the endurance of yet another day in some small way. It is knowing I have a tale to tell to inspire others to weave together their own story of survival and success. It is knowing I have surrendered my power, my control over my life and am willing to be used for the purpose I was created for. That is what is keeping me going. So for the first time since I was 15 years old I am without employment. In a fabulous economy, to boot, accompanied by a MOUNTAIN of debt. And it feels strangely exhilarating as I, truly and honestly for the first time ever, walk in faith not fear into my uncharted future...
Thanks for joining,
Leah
Could the strokes have been a cleansing, some sort of re-birth? Somehow this time this health crisis feels different. It's as though if I sit back and allow it (and only if I truly surrender power and control over my life) there is a beautiful, soft, luminescent, radiant light lifting me up and out of the well of darkness entirely. All I know is that by the skin of my teeth and the grace of God I am alive right now, let alone not feeble in mind or body. My life was spared for a purpose much greater than just me. It is clinging to this belief that is getting me through such uncertainty. It is knowing I have reached out to others with similar health woes and have touched their lives, brought some strength, light, laughter, determination, hope or perspective to their pain and confusion. I have helped their loved ones understand a little bit more about what they are going through. I have opened up my heart and soul on the pages of this blog and have been blessed abundantly in return by each comment, each person that affirms I may have assisted the endurance of yet another day in some small way. It is knowing I have a tale to tell to inspire others to weave together their own story of survival and success. It is knowing I have surrendered my power, my control over my life and am willing to be used for the purpose I was created for. That is what is keeping me going. So for the first time since I was 15 years old I am without employment. In a fabulous economy, to boot, accompanied by a MOUNTAIN of debt. And it feels strangely exhilarating as I, truly and honestly for the first time ever, walk in faith not fear into my uncharted future...
Thanks for joining,
Leah
Wednesday, September 15, 2010
A Great Birthday
Yesterday was my husband's birthday...and I owed him big time. First, he got me soooo good on April Fool's Day that some payback was in order. Second, he had such a miserable birthday last year I knew this year had to be good. Miserable birthday's suck, and the more we can avoid them the better! Well I am happy to report mission accomplished on both counts.
My husband had been a pretty unhappy man the last few years. My health problems have completely redefined our reality in life and the compromises he has made, feelings he has had to stuff deep inside, sacrifices he has endured to see our marriage through "in sickness and in health" were taking their toll on him big time. Last year he refused to allow me to celebrate his birthday in any special way. He was depressed and morose and just wanted his 33rd to be over, not at all okay with where he was in life. I filed that memory away and vowed to myself that his 34th would be better. The beginning of this year did not find him much improved. He was extremely unhappy with his job, our financial situation, his career prospects, basically everything in his life except me (believe it or not) and the dog. He took a week of vacation from work just to sit at home and think. He needed to assess if he could implement an attitude adjustment to see his well-paid but totally unfulfilling gazillion-hours-a-week job through, or if he needed to cut his losses (and further our financial nightmare) and go look for something else. Sometimes a break and some perspective are all we need in life, and he went back to work after that week, still unhappy but renewed to serve his family in the best way possible and stick it out. But the proverbial shit had hit the fan during his absence, and there was DRAMA going on at the company... So one morning I woke to a message from him, pensive and stressed, to call him immediately. I returned his call and he declares in a weak and wobbly voice that he is so sorry, it is not his fault, but they just pushed him too far and he had hit one of his co-workers and been arrested! My heart did back flips leaping into my throat and out of my eyeballs as I begun to digest the reality of what he was telling me. He was now without a job, fired for sure, with criminal charges of assault against him, in jail...where was I going to get an attorney...oh the mess was compounding in my brain as he bursts out...April Fool's Day! Such a good thing he was not standing in front of me or I would have been a murderess and widow at the same time!
I am happy to report that 2010 has brought about tremendous circumstances and we both have had a re-birth out of our compounding misery. Towards the end of April we realized the life we were working so hard to achieve was not the one we even wanted. It was the one that was expected, what we were supposed to do. It started the day I wrote my post An Extraordinary Life and grew from there. I was ready to throw it all away and pile up in our truck and head to some romantic and adventurous South American city and start over. Not quite as insane as I am he didn't exactly go for that fantasy, but it got us both thinking, our creative juices flowing. He decided to chuck the long-standing plan to get his MBA, something he had convinced himself was a necessity for his financially lucrative but passionless business career. Instead he decided to embark on his dream and is studying acting, a long standing desire he had stuffed way back on the "impractical" shelf of life, for obvious reasons. But now he plans to pursue it, is in a great acting class and has already been in a student film! He is absolutely loving it and I see that passionate and excited spark back in his eye that died and was buried so long ago. Watching him grab his destiny and shape it into something his heart beats for gave me courage. I started really getting into my blogging and have watched my life align with my true purpose and am pursuing a career as a writer, leading the charge with my Fibromyalgia Crusade! We are both walking in absolute faith into the uncertain and unknown future and there is something so freeing about it...
So this year I was quite excited to celebrate his birthday. I was in the hospital for mine and decided to steal a bit of his thunder to celebrate my having survived those 2 strokes, viewing it as a joint birthday celebration. I called and made reservations at our favorite highfalutin steak & seafood restaurant we dream of for special occasions. Granted I had no way to pay for this expensive fine dining experience, but felt justified because we both deserved it, damn it! Then last week as we were going over our finances he made me promise no extravagance and it was blazingly obvious, the red far outweighing the black in our bank account, that I would have to cancel the prized reservations. Okay, time to get creative... I turned it around by surprising him with a new cell phone that he desperately needed. But in order to surprise him I had to steal his phone from him so I could have the new one set up and ready to go...and this is where the payback comes in. On Monday night I turned off his phone and hid it in my desk drawer. He frantically wakes me up at 5 o'clock yesterday morning searching for it. I played half-asleep and groggy (not that hard to do) and told him I had not seen it. I squinted at his hands and told him it was in his hand and he corrected me that my phone was in his hand, he was trying to call his phone with it but could not find it anywhere. So I gave him my business line cell to use and sent him on his way, sure he would figure out I was up to something. Keeping up the charade, when he called me from my phone for our morning chat I answered "Why are you calling me from Leah Tyler's phone?".
I picked a once-upon-a-time hot-spot, a fun and antiquated 1950's Tiki-Hut of a happy hour to host our dinner. We sat in the bar and ordered cheap appetizers galore and exotic rum cocktails (virgin for this stroke victim) and laughed and had fun, and the food was actually really good. When he got up to use the restroom I put the wrapped package with his new sleek, cutting-edge, just released super-duper phone on his chair and when he opened it he was shocked. Mission accomplished! He had no idea I was behind the missing phone charade and was so happy with his new toy I thought I was going to spend the rest of the evening "alone" as he set out to learn all the tricks and technology he now held in the palm of his hand. We eventually retired out to the patio and sat under the misters and he smoked a good cigar and we relaxed. Then we went to a little place that serves heaven on a dish in the form of bread pudding for desert and had such a fun night. We spent a fraction of what the fancy steakhouse would have cost us, had a great time, and more importantly learned to adapt to our circumstances. No we are not where we want to be in life right now, but where we are is really not that darn bad.
Thanks for joining,
Leah
My husband had been a pretty unhappy man the last few years. My health problems have completely redefined our reality in life and the compromises he has made, feelings he has had to stuff deep inside, sacrifices he has endured to see our marriage through "in sickness and in health" were taking their toll on him big time. Last year he refused to allow me to celebrate his birthday in any special way. He was depressed and morose and just wanted his 33rd to be over, not at all okay with where he was in life. I filed that memory away and vowed to myself that his 34th would be better. The beginning of this year did not find him much improved. He was extremely unhappy with his job, our financial situation, his career prospects, basically everything in his life except me (believe it or not) and the dog. He took a week of vacation from work just to sit at home and think. He needed to assess if he could implement an attitude adjustment to see his well-paid but totally unfulfilling gazillion-hours-a-week job through, or if he needed to cut his losses (and further our financial nightmare) and go look for something else. Sometimes a break and some perspective are all we need in life, and he went back to work after that week, still unhappy but renewed to serve his family in the best way possible and stick it out. But the proverbial shit had hit the fan during his absence, and there was DRAMA going on at the company... So one morning I woke to a message from him, pensive and stressed, to call him immediately. I returned his call and he declares in a weak and wobbly voice that he is so sorry, it is not his fault, but they just pushed him too far and he had hit one of his co-workers and been arrested! My heart did back flips leaping into my throat and out of my eyeballs as I begun to digest the reality of what he was telling me. He was now without a job, fired for sure, with criminal charges of assault against him, in jail...where was I going to get an attorney...oh the mess was compounding in my brain as he bursts out...April Fool's Day! Such a good thing he was not standing in front of me or I would have been a murderess and widow at the same time!
I am happy to report that 2010 has brought about tremendous circumstances and we both have had a re-birth out of our compounding misery. Towards the end of April we realized the life we were working so hard to achieve was not the one we even wanted. It was the one that was expected, what we were supposed to do. It started the day I wrote my post An Extraordinary Life and grew from there. I was ready to throw it all away and pile up in our truck and head to some romantic and adventurous South American city and start over. Not quite as insane as I am he didn't exactly go for that fantasy, but it got us both thinking, our creative juices flowing. He decided to chuck the long-standing plan to get his MBA, something he had convinced himself was a necessity for his financially lucrative but passionless business career. Instead he decided to embark on his dream and is studying acting, a long standing desire he had stuffed way back on the "impractical" shelf of life, for obvious reasons. But now he plans to pursue it, is in a great acting class and has already been in a student film! He is absolutely loving it and I see that passionate and excited spark back in his eye that died and was buried so long ago. Watching him grab his destiny and shape it into something his heart beats for gave me courage. I started really getting into my blogging and have watched my life align with my true purpose and am pursuing a career as a writer, leading the charge with my Fibromyalgia Crusade! We are both walking in absolute faith into the uncertain and unknown future and there is something so freeing about it...
So this year I was quite excited to celebrate his birthday. I was in the hospital for mine and decided to steal a bit of his thunder to celebrate my having survived those 2 strokes, viewing it as a joint birthday celebration. I called and made reservations at our favorite highfalutin steak & seafood restaurant we dream of for special occasions. Granted I had no way to pay for this expensive fine dining experience, but felt justified because we both deserved it, damn it! Then last week as we were going over our finances he made me promise no extravagance and it was blazingly obvious, the red far outweighing the black in our bank account, that I would have to cancel the prized reservations. Okay, time to get creative... I turned it around by surprising him with a new cell phone that he desperately needed. But in order to surprise him I had to steal his phone from him so I could have the new one set up and ready to go...and this is where the payback comes in. On Monday night I turned off his phone and hid it in my desk drawer. He frantically wakes me up at 5 o'clock yesterday morning searching for it. I played half-asleep and groggy (not that hard to do) and told him I had not seen it. I squinted at his hands and told him it was in his hand and he corrected me that my phone was in his hand, he was trying to call his phone with it but could not find it anywhere. So I gave him my business line cell to use and sent him on his way, sure he would figure out I was up to something. Keeping up the charade, when he called me from my phone for our morning chat I answered "Why are you calling me from Leah Tyler's phone?".
I picked a once-upon-a-time hot-spot, a fun and antiquated 1950's Tiki-Hut of a happy hour to host our dinner. We sat in the bar and ordered cheap appetizers galore and exotic rum cocktails (virgin for this stroke victim) and laughed and had fun, and the food was actually really good. When he got up to use the restroom I put the wrapped package with his new sleek, cutting-edge, just released super-duper phone on his chair and when he opened it he was shocked. Mission accomplished! He had no idea I was behind the missing phone charade and was so happy with his new toy I thought I was going to spend the rest of the evening "alone" as he set out to learn all the tricks and technology he now held in the palm of his hand. We eventually retired out to the patio and sat under the misters and he smoked a good cigar and we relaxed. Then we went to a little place that serves heaven on a dish in the form of bread pudding for desert and had such a fun night. We spent a fraction of what the fancy steakhouse would have cost us, had a great time, and more importantly learned to adapt to our circumstances. No we are not where we want to be in life right now, but where we are is really not that darn bad.
Thanks for joining,
Leah
Tuesday, September 14, 2010
A Unified Front
There are so many variables with Fibromyalgia. Some people have this symptom, some have that symptom. Some have found ways to heal while others have not (surely not for lack of trying!). Some are so severe they can barely walk and live on narcotics while others lift weights at the gym daily and work 2 jobs. I am coming to realize the pure range of this illness is one of the main reasons we are so misunderstood! Not only can modern medicine not just poke your blood out of your vein with a needle or scan your brain with some radiation blaster to tell you what is wrong with you, but we all experience Fibromyalgia with different symptoms and varying severity and it has compounded a mass confusion. We the patients cannot even understand or agree on what it is!
Last year I had to get a root canal. I was extremely paranoid about the hurt involved, never having had one before and knowing how overly sensitive I am to any sensation of pain. The endodontist was amazing and numbed me up to the point that I felt NOTHING. God bless him! His assistant, on the other hand, was something else. When I told her why I was so worried about the pain, because I have Fibromyalgia, she looked her snooty little nose down at me lying in the examining chair and told me she had Fibromyalgia as well. I asked her how she managed it. She pompously informed me that she worked out every day and just powered through the pain. My thought, You must not have the same kind of Fibromyalgia I have! Luckily at this point my mouth was hinged open in prep for the root canal so all I could do was glare at her.
But I have noticed this attitude over and over again. There are so many different theories out there. Root causes, nutritional deficiencies, neurological, cranial injury, depression, viruses, TMJ, sleep disorders, genetics, trauma, elevated neurotransmitter activity, central nervous system pain amplification, hormonal imbalance, depressed serotonin and/or growth hormone...oh the list goes on and on! And then there are so many other conditions most Fibromyalgia patients suffer from as well, each encompassing their own complexities of cross-over symptoms. But the bottom line is that the jury is still out, the clinical basis still in the research and development arena, and while there is a real push for awareness and treatment, no 1 protocol works for every patient. This is the crux of our problem!
I believe if we, the patient body, accepted that Fibromyalgia is indeed a cluster of varying illnesses sharing similar symptoms, and showed a bit more compassion and understanding to our fellow-fibrates, the acceptance and support would go a long way to showing the world at large what we are going through is indeed real. Let's be honest here, half of what makes this so hard to live with is the way we are treated, and not just by uncompassionate family members and friends or archaic MD's. The way we relate to each other has a huge impact as well! I see a fair amount of judgment in our fraternity towards its own members. Some have found the holy grail that works for them (or what they are trying to sell) and set out to convince the world that if every Fibromyalgia patient just took this supplement or did this exercise or got this treatment then poof! It would be gone. Some are genuine in wanting to share their success. But I know personally when I was in the depths of despair over my quickly disintegrating physical and mental capabilities, the last thing I had the patience to listen to was one more anecdotal tale about how if I would just buy some special vitamin or juice or potion I would be cured. Quite frankly, it only served to piss me off! I was one sick girl and vitamins alone were not going to provide a magical remedy to solve my myriad of problems. Like politics or religion, this is not a 1 size fits all disease!
The reality of Fibromyalgia is that the tremendous amount of variable symptoms and degrees of incapacitation are serving to sever us as a community, a community that MUST stand with solidarity, with one voice, if we ever expect validation. I even find myself (before I sat down and wrote my nifty little synopsis) focusing on my individual experience instead of a general overview of what the disease is and how it affects those afflicted. I believe I know what my particular Fibromyalgia was caused by and have figured out a way to manage it to the best of my ability. But that in no way means every Fibromyalgia patient has it for the same reason, can manage it the same way or will experience relief from the same treatment. The sooner we get on the same page, hell, even just start reading the same book, I believe our cause will come together under the umbrella of compassion and grace and truly further awareness for real.
I have just defined the platform for phase 1 of "The Fibromyalgia Crusade"! Let's stand together, accept that Fibromyalgia is a DIVERSE disease and support our fellow-sufferers with compassion, acceptance and understanding, not harsh judgment or dogmatic close-mindedness. Let's recognize that my Fibromyalgia is not the same as your Fibromyalgia which is not the same as their Fibromyalgia. But we all have Fibromyalgia! Let's bring awareness to a whole new level by accepting each other first, and then demanding acceptance from the world at large. God bless us all!
Thanks for joining,
Leah
Last year I had to get a root canal. I was extremely paranoid about the hurt involved, never having had one before and knowing how overly sensitive I am to any sensation of pain. The endodontist was amazing and numbed me up to the point that I felt NOTHING. God bless him! His assistant, on the other hand, was something else. When I told her why I was so worried about the pain, because I have Fibromyalgia, she looked her snooty little nose down at me lying in the examining chair and told me she had Fibromyalgia as well. I asked her how she managed it. She pompously informed me that she worked out every day and just powered through the pain. My thought, You must not have the same kind of Fibromyalgia I have! Luckily at this point my mouth was hinged open in prep for the root canal so all I could do was glare at her.
But I have noticed this attitude over and over again. There are so many different theories out there. Root causes, nutritional deficiencies, neurological, cranial injury, depression, viruses, TMJ, sleep disorders, genetics, trauma, elevated neurotransmitter activity, central nervous system pain amplification, hormonal imbalance, depressed serotonin and/or growth hormone...oh the list goes on and on! And then there are so many other conditions most Fibromyalgia patients suffer from as well, each encompassing their own complexities of cross-over symptoms. But the bottom line is that the jury is still out, the clinical basis still in the research and development arena, and while there is a real push for awareness and treatment, no 1 protocol works for every patient. This is the crux of our problem!
I believe if we, the patient body, accepted that Fibromyalgia is indeed a cluster of varying illnesses sharing similar symptoms, and showed a bit more compassion and understanding to our fellow-fibrates, the acceptance and support would go a long way to showing the world at large what we are going through is indeed real. Let's be honest here, half of what makes this so hard to live with is the way we are treated, and not just by uncompassionate family members and friends or archaic MD's. The way we relate to each other has a huge impact as well! I see a fair amount of judgment in our fraternity towards its own members. Some have found the holy grail that works for them (or what they are trying to sell) and set out to convince the world that if every Fibromyalgia patient just took this supplement or did this exercise or got this treatment then poof! It would be gone. Some are genuine in wanting to share their success. But I know personally when I was in the depths of despair over my quickly disintegrating physical and mental capabilities, the last thing I had the patience to listen to was one more anecdotal tale about how if I would just buy some special vitamin or juice or potion I would be cured. Quite frankly, it only served to piss me off! I was one sick girl and vitamins alone were not going to provide a magical remedy to solve my myriad of problems. Like politics or religion, this is not a 1 size fits all disease!
The reality of Fibromyalgia is that the tremendous amount of variable symptoms and degrees of incapacitation are serving to sever us as a community, a community that MUST stand with solidarity, with one voice, if we ever expect validation. I even find myself (before I sat down and wrote my nifty little synopsis) focusing on my individual experience instead of a general overview of what the disease is and how it affects those afflicted. I believe I know what my particular Fibromyalgia was caused by and have figured out a way to manage it to the best of my ability. But that in no way means every Fibromyalgia patient has it for the same reason, can manage it the same way or will experience relief from the same treatment. The sooner we get on the same page, hell, even just start reading the same book, I believe our cause will come together under the umbrella of compassion and grace and truly further awareness for real.
I have just defined the platform for phase 1 of "The Fibromyalgia Crusade"! Let's stand together, accept that Fibromyalgia is a DIVERSE disease and support our fellow-sufferers with compassion, acceptance and understanding, not harsh judgment or dogmatic close-mindedness. Let's recognize that my Fibromyalgia is not the same as your Fibromyalgia which is not the same as their Fibromyalgia. But we all have Fibromyalgia! Let's bring awareness to a whole new level by accepting each other first, and then demanding acceptance from the world at large. God bless us all!
Thanks for joining,
Leah
Sunday, September 12, 2010
How Can I Explain Fibromyalgia?
I attended the birthday party of a good friend last night. Just an intimate and impromptu get together at her house, I found myself given the opportunity for the first time since I have taken up the proverbial Fibromyalgia cross to promote my condition and raise awareness, the new charge of my life. But I was at a loss as to how to explain it without launching into 20 minutes of background information to answer each question. It is a messy and complicated experience with so man
y variables between every patient, each with an individual and woeful tale to tell. It became abundantly clear as I was losing my momentum and focus that I must devise a "30-Second Elevator Ride" synopsis that clearly defines, explains and promotes the cause. So today amidst the booming NY Giants (GO GIANTS!) game pulsing from my big-screen, I set out to research and condense the best, most effective, clear & concise synopsis of Fibromyalgia that will get the word out and leave each person I encounter with a basic and clear understanding of what Fibromyalgia is. Not Fibromyalgia as Lyrica or Cymbalta advertise it, not to diss the attention their advertising brings, but really WHAT IS FIBROMYALGIA?
"Fibromyalgia affects between 2-6 million Americans. It is a neurological condition stemming from the central nervous system that produces a sensation of severe body pain, stiffness, cognitive impairment, fatigue & insomnia. Fibromyalgia patients frequently suffer from other symptoms and complex medical conditions as well. It is believed to be caused by a cluster of factors working together; a genetic mutation susceptibility, infections and a specific trauma or injury. There is no cure and prescription treatments offer limited relief with high-incidents of side-effects. It is a lifelong, non-degenerative condition that can be managed using a holistic, total body approach to wellness but the quality of life of a Fibromyalgia patient is forever altered as basic life functioning diminishes."*
Well there you have it folks! This is Fibromyalgia as Leah views it. I tried to keep it scientifically loose, comprehensible to the average person and broad enough to encompass the variety and flux of symptoms and severity we all suffer from. Now I just have to commit this to memory (fibro fog!) and pull it out any chance I get. If I keep the focus off my specific experience and make it more about a general condition many suffer from I believe that will go a long way to promoting the "realness" of this awesome predicament we find ourselves in.
Thanks for joining,
Leah
*Some information in this post was provided by The National Fibromyalgia Research Association and Mayo Clinic.
y variables between every patient, each with an individual and woeful tale to tell. It became abundantly clear as I was losing my momentum and focus that I must devise a "30-Second Elevator Ride" synopsis that clearly defines, explains and promotes the cause. So today amidst the booming NY Giants (GO GIANTS!) game pulsing from my big-screen, I set out to research and condense the best, most effective, clear & concise synopsis of Fibromyalgia that will get the word out and leave each person I encounter with a basic and clear understanding of what Fibromyalgia is. Not Fibromyalgia as Lyrica or Cymbalta advertise it, not to diss the attention their advertising brings, but really WHAT IS FIBROMYALGIA?"Fibromyalgia affects between 2-6 million Americans. It is a neurological condition stemming from the central nervous system that produces a sensation of severe body pain, stiffness, cognitive impairment, fatigue & insomnia. Fibromyalgia patients frequently suffer from other symptoms and complex medical conditions as well. It is believed to be caused by a cluster of factors working together; a genetic mutation susceptibility, infections and a specific trauma or injury. There is no cure and prescription treatments offer limited relief with high-incidents of side-effects. It is a lifelong, non-degenerative condition that can be managed using a holistic, total body approach to wellness but the quality of life of a Fibromyalgia patient is forever altered as basic life functioning diminishes."*
Well there you have it folks! This is Fibromyalgia as Leah views it. I tried to keep it scientifically loose, comprehensible to the average person and broad enough to encompass the variety and flux of symptoms and severity we all suffer from. Now I just have to commit this to memory (fibro fog!) and pull it out any chance I get. If I keep the focus off my specific experience and make it more about a general condition many suffer from I believe that will go a long way to promoting the "realness" of this awesome predicament we find ourselves in.
Thanks for joining,
Leah
*Some information in this post was provided by The National Fibromyalgia Research Association and Mayo Clinic.
Saturday, September 11, 2010
Background: We Gotta Get Out Of Here
I went home from that last pancreatitis hospitalization a changed woman. Something inside me had broken and I was just not the same. Pain to that extreme, shamed to such a degree, I felt overwhelmed. That first week home I just sat and stared at the TV, watching that Umbrella Rhianna video over and over again, slack-jawed and drooling as she swept and swung her mile-long legs and slithered her silver-painted self across the screen. I was mesmerized by every stimulating sight and sound. I would literally stare into space for 5 minutes at a time before coherent thought would take over and I could focus again. However, I refused to allow myself to view this as a major setback, more like a routine surgery. I had just returned to work 2 months prior after 7 long and grueling months on disability. So I took my required 2 weeks off, going right back without a question as to whether or not this was a good idea. I was hell-bent and determined not to let yet another health saga get me down. I was done being beat down and wanted control, damn it!
I still held the Assistant Manager position at the cosmetics counter, being a union employee they were forced to hold my job for up to a year. I resumed my position upon my return from disability but it was quickly becoming obvious it was too much for me, especially after the Pancreatitis. Then they started getting screwy with my set guaranteed schedule and tried to force me into a 5 day a week job when I had worked a 4 day a week position for the last 3 years. I was offered an hourly raise to step down into a sales position to compensate for loss of manager commission and I took it, taking yet another step further down that career ladder that no longer existed for me. Then they forced me into a part-time night position. My union rep was a fluff of puffed feathers, spewing anger and emotion and did absolutely nothing to further my cause. I was obviously being discriminated against because of my health conditions, which is illegal, but that was the last thing I had strength or fight for. I resigned myself not to allow rage and anger at the situation take over because the consequence on my health were so severe. It was a big practice of namaste, let it go, don't own this, release it back into the universe and focus on what is good in my life. I had to focus on my recovery and progress, but it was so hard, I was so angry! I had lost darn near everything in my life and although I had regained some health, was still in excruciating pain every moment of every hour of every day of my life.
The rest of the year passed in a blur as I faithfully swallowed my Vicoprofen & Tramadol to get through daily life and eventually switched out Neurontin for Lyrica because the pain was just too much. My husband and I decided to make a geographical change for a variety of reasons and we set out to cast our net and see what turned up. We were vacillating between Las Vegas and Phoenix, sussing out the best opportunities in each city. We had family in both cities, were desperate for some warm weather and simply could not afford to live in the Bay area any longer. I was bringing in close to no income, spending a fortune on supplements and my prescription drug co-pays alone were $270 a month. Credit card bills were insane at this point and we had to go into debt consolidation to try and save ourselves from bankruptcy. We were both working hard, freezing cold and quite unhappy. Lyrica helped quite a bit more with the pain then Neurontin, but I was still taking Vicoprofen when I worked. It made me so nauseous, mood-swingie & constipated it was awful. Each time I took a pill I had to make a choice, pain or side-effects. That was never an easy one.
My husband set out to look for a job in our new yet-to-be-determined city. He was desperate, miserable, unhappy and faithfully searched for months with no nibbles, no bites, no interest. We believed it would happen, though, and began packing up the house, one box at a time. People would come over and look at the wall of boxes in the living room and ask us when we were moving. We would tell them soon, and either to Phoenix or Vegas. We got a lot of strange looks. But we knew we had to go, it was just a matter of the right opportunity at the right time. We firmly believed we had not made it this far to fail at this point and really did live in faith that the situation would work itself out. We ultimately decided Phoenix was a better choice for us and flew out for a weekend in January to look at apartments and check out the community. We found a place we liked in a great location and put an $80 deposit on it with an April 1 move in date. We figured if we lost the $80 so what, but it put us 1 step closer to actualizing our goal. And then low and behold, my husband got a call from a head-hunter in mid-March, did his round of interviews and got a job offer with an April 14th start date! We put in notice at our respective jobs, finished packing in a flurry and hauled our asses to Arizona, ready to start a new life!
Thanks for joining,
Leah
I still held the Assistant Manager position at the cosmetics counter, being a union employee they were forced to hold my job for up to a year. I resumed my position upon my return from disability but it was quickly becoming obvious it was too much for me, especially after the Pancreatitis. Then they started getting screwy with my set guaranteed schedule and tried to force me into a 5 day a week job when I had worked a 4 day a week position for the last 3 years. I was offered an hourly raise to step down into a sales position to compensate for loss of manager commission and I took it, taking yet another step further down that career ladder that no longer existed for me. Then they forced me into a part-time night position. My union rep was a fluff of puffed feathers, spewing anger and emotion and did absolutely nothing to further my cause. I was obviously being discriminated against because of my health conditions, which is illegal, but that was the last thing I had strength or fight for. I resigned myself not to allow rage and anger at the situation take over because the consequence on my health were so severe. It was a big practice of namaste, let it go, don't own this, release it back into the universe and focus on what is good in my life. I had to focus on my recovery and progress, but it was so hard, I was so angry! I had lost darn near everything in my life and although I had regained some health, was still in excruciating pain every moment of every hour of every day of my life.
The rest of the year passed in a blur as I faithfully swallowed my Vicoprofen & Tramadol to get through daily life and eventually switched out Neurontin for Lyrica because the pain was just too much. My husband and I decided to make a geographical change for a variety of reasons and we set out to cast our net and see what turned up. We were vacillating between Las Vegas and Phoenix, sussing out the best opportunities in each city. We had family in both cities, were desperate for some warm weather and simply could not afford to live in the Bay area any longer. I was bringing in close to no income, spending a fortune on supplements and my prescription drug co-pays alone were $270 a month. Credit card bills were insane at this point and we had to go into debt consolidation to try and save ourselves from bankruptcy. We were both working hard, freezing cold and quite unhappy. Lyrica helped quite a bit more with the pain then Neurontin, but I was still taking Vicoprofen when I worked. It made me so nauseous, mood-swingie & constipated it was awful. Each time I took a pill I had to make a choice, pain or side-effects. That was never an easy one.
My husband set out to look for a job in our new yet-to-be-determined city. He was desperate, miserable, unhappy and faithfully searched for months with no nibbles, no bites, no interest. We believed it would happen, though, and began packing up the house, one box at a time. People would come over and look at the wall of boxes in the living room and ask us when we were moving. We would tell them soon, and either to Phoenix or Vegas. We got a lot of strange looks. But we knew we had to go, it was just a matter of the right opportunity at the right time. We firmly believed we had not made it this far to fail at this point and really did live in faith that the situation would work itself out. We ultimately decided Phoenix was a better choice for us and flew out for a weekend in January to look at apartments and check out the community. We found a place we liked in a great location and put an $80 deposit on it with an April 1 move in date. We figured if we lost the $80 so what, but it put us 1 step closer to actualizing our goal. And then low and behold, my husband got a call from a head-hunter in mid-March, did his round of interviews and got a job offer with an April 14th start date! We put in notice at our respective jobs, finished packing in a flurry and hauled our asses to Arizona, ready to start a new life!
Thanks for joining,
Leah
Thursday, September 9, 2010
You Can Get To Livin' Or You Can Get To Dyin'...
...but you can't do both. I had a doctor say that to me once. Not one I was particularly fond of, I might add, but I saw the truth in his wisdom. Of course his version of living was to pump me full of Lyrica & Cymbalta and watch me balloon up to epic proportions, a walking pancreas attack waiting to happen, so I found a new doctor. But today as I realize I am straddling life and death simultaneously that phrase took on a whole new meaning. Part of me has died, I have just been refusing to acknowledge it. That type-A overachiever-perfectionist control-freak rise-to-any-occasion work-until-I-collapse girl is dead. She died in that hospital bed on July 30th when I was informed I was a stroke victim, it just took me going back to my old job to realize it. The last 2 days at work have been awful. Retail in this economy is tough, and I cannot even begin to do back-flips over what I am calling the "75 Point Service Objectives" I am required to perform on each customer in order to squeeze every last penny out of them. It just seems so irrelevant! I have forgotten basic product knowledge that in the past I could recite in my sleep. I am, by my normal standards, half-assing it! But my natural inclination is to achieve, and pulling in the reigns on myself darn near impossible. If there are 4 people standing there that need to be helped I will help them all, to the point that I am ready to collapse! Racing around at top speed, forgetting what I am doing from one minute to the next, my hair frizzing out so I look like my poodle, sweat carving rivulets through my makeup as it pours down my face, hands shaking and words tripping over my tongue in incoherent babble. Oh I was a sight! So about halfway through today it smacked me in the face. You are done. The cost is too high, the price too steep. I do not have to give what this job demands and cannot risk myself, be careless with myself, push myself anymore.
I have been attempting to get back in the box I lived in pre-strokes, and I just don't fit in it anymore. What happened is a really big deal. Huge, and I have not been giving it proper gravity in my life. Don't get me wrong, its been my obsession day in and day out, returning to Spanish class and work and resuming "normal", like I could just dust myself off and jump right back on the horse I was riding before my brain's blood vessels decided to have an electric show. I believe that is because normal is what I fought so hard to get back to when I was seriously disabled with CFS & Fibromyalgia. Going back to work, having a social life again, resuming and regaining some of what I had lost. But over the last two days, with each pang in my brain or ping in my body, I became acutely aware of how vulnerable I really am and close to death I actually came. I also know how lucky I am to have survived intact and cannot continue to rely on my own wisdom to see me through this momentous challenge. I have got to put my actions behind my words and live in faith not fear! I have to listen to my body for once in my life and recognize the ill-fated pattern. I pushed myself into Pancreatitis, past Chronic Fatigue Syndrome, right through Fibromyalgia and slid into home plate with 2 strokes, i'm out! NO MORE PUSHING MYSELF! Of course that goes against every value I was raised with but look where they have gotten me...not a pretty sight.
So I am going to get to livin'. Its just going to be in a different form than it was before. I am so paranoid and freaked out about all the details of life that I cannot control and until I relinquish that control it will be my control! I believe I was created with a purpose and a gift, I have been sharpened and honed in many different ways to develop that gift and now need to sit back and allow it to take form in my life. I can do it my way or God's way, and I am finally ready to choose God's way.
Thanks for joining,
Leah
I have been attempting to get back in the box I lived in pre-strokes, and I just don't fit in it anymore. What happened is a really big deal. Huge, and I have not been giving it proper gravity in my life. Don't get me wrong, its been my obsession day in and day out, returning to Spanish class and work and resuming "normal", like I could just dust myself off and jump right back on the horse I was riding before my brain's blood vessels decided to have an electric show. I believe that is because normal is what I fought so hard to get back to when I was seriously disabled with CFS & Fibromyalgia. Going back to work, having a social life again, resuming and regaining some of what I had lost. But over the last two days, with each pang in my brain or ping in my body, I became acutely aware of how vulnerable I really am and close to death I actually came. I also know how lucky I am to have survived intact and cannot continue to rely on my own wisdom to see me through this momentous challenge. I have got to put my actions behind my words and live in faith not fear! I have to listen to my body for once in my life and recognize the ill-fated pattern. I pushed myself into Pancreatitis, past Chronic Fatigue Syndrome, right through Fibromyalgia and slid into home plate with 2 strokes, i'm out! NO MORE PUSHING MYSELF! Of course that goes against every value I was raised with but look where they have gotten me...not a pretty sight.
So I am going to get to livin'. Its just going to be in a different form than it was before. I am so paranoid and freaked out about all the details of life that I cannot control and until I relinquish that control it will be my control! I believe I was created with a purpose and a gift, I have been sharpened and honed in many different ways to develop that gift and now need to sit back and allow it to take form in my life. I can do it my way or God's way, and I am finally ready to choose God's way.
Thanks for joining,
Leah
Wednesday, September 8, 2010
So Much Beautiful Pain
I want to take a moment to say Thank You to my readers, my supporters, my Facebook Fibromyalgia-family. I have been so overwhelmingly blessed to get to know each and every one of you over this last month. You have given me strength, acceptance, focus, laughter and clarity. I have also been humbled tremendously as we exchange stories, struggles, pain and anguish. I have found a camaraderie with you, something that was absent from my life, something I did not realize how badly I needed. But I have to admit something here...something I am not proud of. Although "managing" Fibromyalgia is a constant and everyday struggle, there reached a point in my recovery where I was no longer severely disabled and was able to return to the land of the living. I raced back to life, as limited as it was, gleeful to turn my back on the nightmare that was Fibromyalgia. I was so grateful to resume something even remotely resembling normal and attempted to pick up right where I left off (ha ha, like that was possible!). I conveniently "forgot" the misery and hopelessness accompanied by constant and pervasive writhing body pain, insatiable insomnia, fog brain and panicked desperation about my future. I silently disengaged from my hard-fought journey, just grateful it was behind me and forged ahead into new problems and challenges. They were always tempered by the Fibromyalgia at the end of the day, but Fibromyalgia was not my all-consuming cause anymore and I let her fall way down on my priority list. I would casually mention her only when my lack of normal activity came up. She became my excuse, not my focus.
That was selfish and wrong, and in no way appropriate for someone that had been given the gift of improvement from something so debilitating and devastating to behave. I forgive myself, for I am but human and guess that is what I needed at the time, but in choosing to shove Fibromyalgia into the back of the closet, turned away from not only my hard-fought journey, but the calling of my life. I will forever view the strokes as my "wake-up" to the cause. They reminded me, with a bright and shining light beckoning my very core, that life is fleeting and as purposeful as you make it. I was also reminded how vulnerable I really am and how quickly and easily one can slip into 1 health-nightmare merry-go-round or another. Life can flip on you in a matter of days, minutes. There are no guarantees.
I have found tremendous strength and courage in bonding with my fellow-fibrates. Although it is an everyday struggle I am determined to live in faith, not fear, and actualize my true purpose and calling. As I get to know each of you peeling through your own individual onion layers of illness I see so much beauty accompanied by so much pain, and I feel my feet are firmly rooted now. I must advocate for this disease, and I must thank each and every one of you for your support, words of encouragement, care, concern and acceptance. Together we can stand strong and make change happen, alone we are but that, just alone.
Thanks for joining,
Leah
That was selfish and wrong, and in no way appropriate for someone that had been given the gift of improvement from something so debilitating and devastating to behave. I forgive myself, for I am but human and guess that is what I needed at the time, but in choosing to shove Fibromyalgia into the back of the closet, turned away from not only my hard-fought journey, but the calling of my life. I will forever view the strokes as my "wake-up" to the cause. They reminded me, with a bright and shining light beckoning my very core, that life is fleeting and as purposeful as you make it. I was also reminded how vulnerable I really am and how quickly and easily one can slip into 1 health-nightmare merry-go-round or another. Life can flip on you in a matter of days, minutes. There are no guarantees.
I have found tremendous strength and courage in bonding with my fellow-fibrates. Although it is an everyday struggle I am determined to live in faith, not fear, and actualize my true purpose and calling. As I get to know each of you peeling through your own individual onion layers of illness I see so much beauty accompanied by so much pain, and I feel my feet are firmly rooted now. I must advocate for this disease, and I must thank each and every one of you for your support, words of encouragement, care, concern and acceptance. Together we can stand strong and make change happen, alone we are but that, just alone.
Thanks for joining,
Leah
Tuesday, September 7, 2010
The Everyday Struggle
Yesterday I was so out of sorts. 1 step forward...1 BIG shove back...isn't that what I keep saying? Well I may sit here and preach it but it really sucks to live it! I have my Fibromyalgia managed. For right now, anyway. It took years, a lot of hard work and endless amounts of toil but I was on a major upswing...until the strokes hit. Actually, more to the point, until the Prednisone hit. I AM SO OUT OF CONTROL OF MYSELF!!! I am manic, or I am depressed, there is no middle ground. Both contain their own brand of evil. I am being humbled as I acutely remember what a disgusting and dirty fight it truly was to get Fibromyalgia off the front burner and into the "microwave in the garage" of my life. Sunday I was strong, ready to conquer the world. Certainly stronger than some measly little pills that were amping me up and forcing me to run around like a chicken with no head. I stayed centered and focused and in control, attuned to my higher purpose, exuding (a sometimes forced) serenity all day. But if I don't "down" myself enough one day then the next I am SUPERSPEED! And that is how yesterday started. My attempt to pretend I have a normal life by laying out at the pool was miserable. I was racing through my book, my mind tripping over itself, my feet and legs a blur of bounce, barely able to stand lying there and doing nothing. So I gave in and took a Flexeril which hardly did a thing. An hour later I took 1/4 Xanax, and then I fell LOW. Right back to where I was Saturday; desperate, panicked, freaking out about working in my present state, about not having a steady income, enough money to pay my bills. How can I put makeup on someone with crack-head-shaking hands? How can I even begin to get through a job interview and appear somewhat sane and normal? Once again I find myself so stressed about money problems, medical bills, paranoid, angry, victimized...all consuming me at once.
Sunday I convinced myself I did not have the luxury of running around in this state. I am a stroke victim now, and that changes things. I must exercise prudence and faith and calm and rational behavior. Behaving like the histrionic and melodramatic teenager that is manic Leah is counterproductive to any sort of healthy progress. I keep having to remind myself that my 1 and only goal now is to live. That is my primary purpose and everything else must come second. Yet I feel that I am barely hanging on to the Grand Canyon of life by my fingertips, any second ready to let go and fall into the abyss. So as I freaked out on my husband last night, pouring out all my stress and angst, he gathered me in his arms and said, "Honey, I am glad you are going through this because you are here to go through this. I would have been a widower for just over a month now. I cannot even imagine..." and I flung my arms back around him and held him tight and thanked God for sparing my life. And then I wanted to kick him in the shins for giving me such a massive ice-bucket of water over my head of reality...no not really. God bless that man.
Thanks for joining,
Leah
Sunday I convinced myself I did not have the luxury of running around in this state. I am a stroke victim now, and that changes things. I must exercise prudence and faith and calm and rational behavior. Behaving like the histrionic and melodramatic teenager that is manic Leah is counterproductive to any sort of healthy progress. I keep having to remind myself that my 1 and only goal now is to live. That is my primary purpose and everything else must come second. Yet I feel that I am barely hanging on to the Grand Canyon of life by my fingertips, any second ready to let go and fall into the abyss. So as I freaked out on my husband last night, pouring out all my stress and angst, he gathered me in his arms and said, "Honey, I am glad you are going through this because you are here to go through this. I would have been a widower for just over a month now. I cannot even imagine..." and I flung my arms back around him and held him tight and thanked God for sparing my life. And then I wanted to kick him in the shins for giving me such a massive ice-bucket of water over my head of reality...no not really. God bless that man.
Thanks for joining,
Leah
Monday, September 6, 2010
"Your Such A Pretty Girl, It's A Shame You Are So Unhappy"
I stared back at my doctor slack-jawed, open-mouthed, shocked. This woman had seen me through the worst of my Fibromyalgia and CFS. And here we were 2 years later and she still thinks I am just depressed! Oh I wanted to scream, but that would only make me look crazier! Plus I did not have the energy. What's worse is she was one of the few that had actually helped me. Oh my...
As we sat there battling back and forth, fighting over pain meds, how I was going to be able to work, what the next step was in managing it and what to do about the fact that I could not stand up without feeling like I was crushing myself, she looked me square in the eye and said, "I am not going to give you anything stronger. Once you get on the pain patch you don't ever come off. Go get a massage, acupuncture, you need to figure out how to make yourself better!" And with that she got up with a flourish and flounced out of the room. Holy shit! Did that really just happen? I thought to myself. That was rich. My doctor telling me I need to figure out how to make myself better. Well there goes the God complex, you infallible twit! Strangely enough desperation is what always precipitated every turning point in my recovery, and this encounter left me with TONS of desperation. So I did what she said, set out on a quest to turn over every rock and look under every stone in an attempt to gain some quality of life back and figure out how to live again.
I researched, I spent thousands of $$$, I beat the proverbial crap out of myself daily because my level of functioning was so low. I cried, I threw hourly pity parties, I hated everyone and everything around me because I simply HURT so freakin' bad! I was still working, San Francisco not being a 1 income city, but it was taking me down quickly. After working a 6 hour shift in retail I honestly felt that if I did not have my legs it would have been better, they hurt so bad! I was confused, bewildered, shocked that this had become my life. But I was able to find a little kernel of fight way deep down inside and start pouring this tremendous amount of tumultuous emotion I was feeling into it. I started taking responsibility for my part in this. Not causing it, but in repairing it. At this point in the game it was now startlingly obvious modern medicine had no knowledge of this condition and was not going to fix me. There were no drugs or treatments for this at that time. Fibromyalgia was mildly legitimized when Lyrica became FDA approved, but that had yet to happen. Its existence was even more doubted than it is now.
My quest and research opened my eyes to major truths between man and nature. It led me to view my entire body as a life cycle. I started taking into account every bit of food I put in my mouth, the stress I existed in, exercise, medications and more to the point, attitude. I became aware of the lie the modern American lifestyle was precipitating and how that was causing a multitude of serious illnesses. I knew my hormones were totally out of whack, having been on the Pill for years and years and felt this was really contributing to a huge imbalance. When I would feel even remotely capable I would flutter into a flurry of activity, desperate to catch up with my life that was racing fast ahead of me. Yet after every push there was a crash, but how do you not push? Oh this combat was mentally, physically, emotionally and psychologically exhaustive! And there was no way to get away from it, no relief that was not in the form of a drug-dazed Percocet haze which in some ways was worse than the pain.
I went to The Fibromyalgia & Fatigue Center in Las Vegas. They were wonderful, but quite expensive. They enlightened me to so much about my body. My immune system was null. I was host to a multitude of viruses and infections. My candida was out of control, my thyroid whacked, my testosterone non-existent, my HGH that of a 86 year old. And all of this was precipitated by a severe sleep disorder. I had not had a dream in years and was never getting stage 4 sleep, where growth hormone is produced and the body heals and repairs itself. Oh the list goes on and on. Basically I was a walking breakdown of illness and sickness waiting to collapse. So I started building up my system with supplements, nutrients my blood tests showed I was so deficient in. I started doing gentle yoga and forcing myself to shuffle around the block with my puppy. I stopped eating packaged and prepared, processed, fried and refined foods. I started accepting that I was sick and was going to get better, not giving myself any option. But oh it was so hard and so much work. Each step forward was met with a hard shove back. But I pushed harder. I refused to live life so sick I could not function and did anything and everything I could to improve my situation.
I found an AMAZING acupuncturist and entered an entirely new realm of healing with her. She un-blocked my chakras and restored my flow, released deeply bound bands of stress, tension and pain inside me and did other amazing and incredible things. I went on heavy-duty anti-virals to rid myself of the primary cause of the CFS, endless bouts of anti-biotics, anti-fungals, anti-everything, all the while trying to restore the good that was so out of whack in my body through nutrition and supplements. I did the Lyrica & Cymbalta dance and fell prey to their side-effects, absorbing up a better part of a year of my life. I ballooned up to well over 230 lbs. and existed in a half-conscious state, so medicated I did not feel pain but I also did not feel anything. Name it, I have tried it. Some of it worked, some of it did not and some of it made me worse.
But before I moved to Arizona I made one last appointment with that doctor. I walked in, healthier than I had been in years. I told her what I had done, shared my resources with her and watched her in amazement as she said, "Wow, you really were in pain, weren't you!". Will they ever get it?
Thanks for joining,
Leah
As we sat there battling back and forth, fighting over pain meds, how I was going to be able to work, what the next step was in managing it and what to do about the fact that I could not stand up without feeling like I was crushing myself, she looked me square in the eye and said, "I am not going to give you anything stronger. Once you get on the pain patch you don't ever come off. Go get a massage, acupuncture, you need to figure out how to make yourself better!" And with that she got up with a flourish and flounced out of the room. Holy shit! Did that really just happen? I thought to myself. That was rich. My doctor telling me I need to figure out how to make myself better. Well there goes the God complex, you infallible twit! Strangely enough desperation is what always precipitated every turning point in my recovery, and this encounter left me with TONS of desperation. So I did what she said, set out on a quest to turn over every rock and look under every stone in an attempt to gain some quality of life back and figure out how to live again.
I researched, I spent thousands of $$$, I beat the proverbial crap out of myself daily because my level of functioning was so low. I cried, I threw hourly pity parties, I hated everyone and everything around me because I simply HURT so freakin' bad! I was still working, San Francisco not being a 1 income city, but it was taking me down quickly. After working a 6 hour shift in retail I honestly felt that if I did not have my legs it would have been better, they hurt so bad! I was confused, bewildered, shocked that this had become my life. But I was able to find a little kernel of fight way deep down inside and start pouring this tremendous amount of tumultuous emotion I was feeling into it. I started taking responsibility for my part in this. Not causing it, but in repairing it. At this point in the game it was now startlingly obvious modern medicine had no knowledge of this condition and was not going to fix me. There were no drugs or treatments for this at that time. Fibromyalgia was mildly legitimized when Lyrica became FDA approved, but that had yet to happen. Its existence was even more doubted than it is now.
My quest and research opened my eyes to major truths between man and nature. It led me to view my entire body as a life cycle. I started taking into account every bit of food I put in my mouth, the stress I existed in, exercise, medications and more to the point, attitude. I became aware of the lie the modern American lifestyle was precipitating and how that was causing a multitude of serious illnesses. I knew my hormones were totally out of whack, having been on the Pill for years and years and felt this was really contributing to a huge imbalance. When I would feel even remotely capable I would flutter into a flurry of activity, desperate to catch up with my life that was racing fast ahead of me. Yet after every push there was a crash, but how do you not push? Oh this combat was mentally, physically, emotionally and psychologically exhaustive! And there was no way to get away from it, no relief that was not in the form of a drug-dazed Percocet haze which in some ways was worse than the pain.
I went to The Fibromyalgia & Fatigue Center in Las Vegas. They were wonderful, but quite expensive. They enlightened me to so much about my body. My immune system was null. I was host to a multitude of viruses and infections. My candida was out of control, my thyroid whacked, my testosterone non-existent, my HGH that of a 86 year old. And all of this was precipitated by a severe sleep disorder. I had not had a dream in years and was never getting stage 4 sleep, where growth hormone is produced and the body heals and repairs itself. Oh the list goes on and on. Basically I was a walking breakdown of illness and sickness waiting to collapse. So I started building up my system with supplements, nutrients my blood tests showed I was so deficient in. I started doing gentle yoga and forcing myself to shuffle around the block with my puppy. I stopped eating packaged and prepared, processed, fried and refined foods. I started accepting that I was sick and was going to get better, not giving myself any option. But oh it was so hard and so much work. Each step forward was met with a hard shove back. But I pushed harder. I refused to live life so sick I could not function and did anything and everything I could to improve my situation.
I found an AMAZING acupuncturist and entered an entirely new realm of healing with her. She un-blocked my chakras and restored my flow, released deeply bound bands of stress, tension and pain inside me and did other amazing and incredible things. I went on heavy-duty anti-virals to rid myself of the primary cause of the CFS, endless bouts of anti-biotics, anti-fungals, anti-everything, all the while trying to restore the good that was so out of whack in my body through nutrition and supplements. I did the Lyrica & Cymbalta dance and fell prey to their side-effects, absorbing up a better part of a year of my life. I ballooned up to well over 230 lbs. and existed in a half-conscious state, so medicated I did not feel pain but I also did not feel anything. Name it, I have tried it. Some of it worked, some of it did not and some of it made me worse.
But before I moved to Arizona I made one last appointment with that doctor. I walked in, healthier than I had been in years. I told her what I had done, shared my resources with her and watched her in amazement as she said, "Wow, you really were in pain, weren't you!". Will they ever get it?
Thanks for joining,
Leah
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