After my complete and total emotional/physical breakdown in September of 2006 my mom came to stay with me for a few days so my husband could go to work (someone had to). I was not mentally stable enough to be left alone. Feelings of wanting to just die, cease to exist and not feel the pain or anguish anymore were overtaking me and I did not trust myself, what action I may take because of this despair. My mom has a friend that I know well, I had actually worked for her a couple of years right out of high-school, and she was going through her own health crisis. This woman is a survivor! She was a 20-something young mother of 2 boys when her bi-polar husband mysteriously appeared in front of a speeding train, ending his life. She is a kind and dear woman that did the best she could in the face of very terrible circumstances. Years had passed since we were in each others lives and she was now re-married, had a darling little 2 year-old girl and...thyroid cancer! She had just undergone surgery to have the entire gland removed and was facing awful terrible challenges and realities in the face of a vicious attack on her life and sanity. My mom's next stop was to go help her out (lets just call mom Florence Nightingale, why don't we?) after she nursed me to stability. Lifetimes had passed since this lady and I had last talked so when my mom gave her a call I got on the phone to say hello. I asked her how she was and she said with the most sincere and thoughtful voice possible that she was...GOOD! It was like someone had spurred me with a cattle-prod and slapped me across the face at the same time... She was good? How was she good? She had a little baby and new husband and teenage boys and a lifetime of nasty thyroid meds to tend to and cancer in her body...and she was good? Here I was completely falling apart with some strange (non-terminal) illness no one could treat or cure, mentally breaking down and ready to go jump off that famous orange bridge San Francisco is so well known for, if only I had the energy to get myself there!
She opened my eyes that day to something deep. Something that has been the only way I have survived the awfulness of CFS & Fibromyalgia, and more recently, 2 strokes. I got off the phone with her and seriously marveled at her sincere and genuine response. I wondered how one could be so in control while so blatantly out of control of their circumstances. It became blazingly obvious to me she had chosen to be good. She was not given the position, yet despite her situation was not wallowing in self-pity or anger or frustration. She was meeting life's challenges head on, clear in heart and mind. I am happy to say that 5 years later she is still good. Still riding the never-ending roller-coaster of life's ups and downs like the rest of us, but her eldest has recently gotten married and she is healthy.
The Greek philosopher Epictetus said, “It’s not what happens to you, but how you respond that matters”. I don't think there was every anything said with more truth. Once I realized EVERYTHING had been stripped away from me, leaving me like a rotting carcass picked dry by ugly greasy vultures, I realized I still had 1 thing left...my choice of how to respond to the situation. You can take my money, security, health, stability, job, love, joy, ambitions and hopefulness, but you cannot take away my spirit! You cannot take away my choice of reaction. There have been times where finding that spirit was darn near impossible, but with faith and fortitude I have been able to find my way back to the path of progress and slowly rebuild my life brick-by-brick, inch-by-inch. She taught me something valuable that day, and stretched me in a way I did not know I could be stretched. I am thankful for that wake-up snap so early in the process of this disease, for it showed me a foundation I have been able to establish that has been my saving grace many times over...
Thanks for joining,
Leah
Tuesday, August 31, 2010
Monday, August 30, 2010
God Is Good
Okay I usually try to keep all things God, faith or religion based loose and malleable. I have respect for all of God's children and their personal and chosen way to commune with their maker. My God is the same as your God that is the same as their God, all the same to me. You will be hard-pressed to find a less judgmental or preachy individual, but today I am going to set all that aside and SHOUT FROM THE ROOFTOPS that a miracle has happened and my faith is flowing! Actually my faith was already flowing so maybe that's why this happened. One of the largest stresses in my life, 2nd only to my excessive and ridiculous health problems, are our financial woes. Ironically I just blogged and whined and cried about it last night...how hard it is to work endlessly and do nothing but struggle, barely getting by. How sick I am of not even being able to sneak a little bit of indulgence and time out with my husband to stop and smell the roses, really inhaling and enveloping in their rich fragrant essence. Or take a vacation or go shopping for something other than groceries or do just about anything that resembles enjoyment, because it all requires MONEY. Money we don't even have enough of to pay our bills.
When I was in the hospital at the end of July, strokes zapping my brain and unsure of the promise of survival, I had to swallow the financial fear of what each day in the ICU was costing me and re-focus on what is really important...LIFE. Oh this is so much easier to do while on Dilaudid! When I returned home from my 6-day-$100,000 vacation (ha ha ha) my husband and I sat on the sofa staring at each other, shocked by what had just happened, thrilled beyond compare that I was going to live and simply terrified by what this meant to our finances now that I was off work for at least a month and had racked up even more excessive medical bills. Our funds were already about to crack, and we were ice-skating haphazardly on the top layer of a frozen pond well into the spring thaw. It was thin and just about to break. The dreaded word BANKRUPTCY came up over and over again, catching in the throat of our future but seeming to be the only way out.
A couple of days of de-compression later I woke up with the greatest peace and calm that had come over me while I was sleeping. God had spoken to me in my dreams that we were absolutely going to be okay financially. We had to have faith, for the answer was nowhere near in front of us, and we had to not spend, but we were going to be just fine. I woke my husband up glowing and radiating the conviction of this promise. I felt secure and sure and optimistic and hopeful, and knew if we just continued to WALK IN FAITH, NOT FEAR we would be okay. This incredible calm has vacillated many times over the last 3 weeks. As I returned to real life and the struggle with the steroids, the multiple directions they are pulling my body and mind in all at the same time, as the medical bills come flowing through the mailbox, as the number in our bank account reaches the single digits, it has been hard. I have had to constantly remind myself to get a grip...fear will swallow your whole life up if you let it! But if you ignore it, squash it, give it no credence, then it holds no relevance. We have made going to church a priority, knowing we need the spiritual nourishment communing with our fellow believers gives us. I have also written that check with blind faith to put in the collection basket, knowing there are so many others far less fortunate than we are and believing that in blessing others, we will be blessed.
The phone call came this morning. The answer to the prayers, the fulfillment of the promise God gave me those few weeks back. It is not free money. No never free. It has to be paid back, but it is enough to keep our heads above water and keep us going...what always seems to be the case. We are always blessed with just enough to get by. Nothing more, but no catastrophic carnage either. Once again it has happened and I can breathe a sigh of relief, knowing I can pay my medical bills and consolidate high-interest debt into a low-interest manageable payment. I can keep on seeking wellness and health without fear of eviction from my apartment or repossession of my vehicles. Or refusal of my litany of doctors to keep treating me because I cannot pay them. Thank you, dear Lord, for giving us this reward for our faithful obedience. These are the prayer and verses I say daily, meditate on with my rosary, chant endlessly in the face of manic and frenzy, remind myself of every time fear slimes its gooey sucking treachery into my soul:
Father, Son and Holy Spirit have mercy on me.
I thank you, rejoice in you and submit to your will.
Please use me for your glory.
Amen
Yea, though I walk through the valley of the shadow of death, I will fear no evil, for THOU art with me. Psalm 23:4
I shall not die, but live, and declare the works of the LORD.
Psalm 118:17
Over and over again, every time dread and panic grip my heart, I keep coming back to this. I know my greater purpose on this earth has not been fulfilled, and I keep revisiting the fact that I nearly died just 1 month ago but did not because I still have work to do. Work that can only be accomplished if my sights are right. Oh God is so good...
Thanks for joining,
Leah
When I was in the hospital at the end of July, strokes zapping my brain and unsure of the promise of survival, I had to swallow the financial fear of what each day in the ICU was costing me and re-focus on what is really important...LIFE. Oh this is so much easier to do while on Dilaudid! When I returned home from my 6-day-$100,000 vacation (ha ha ha) my husband and I sat on the sofa staring at each other, shocked by what had just happened, thrilled beyond compare that I was going to live and simply terrified by what this meant to our finances now that I was off work for at least a month and had racked up even more excessive medical bills. Our funds were already about to crack, and we were ice-skating haphazardly on the top layer of a frozen pond well into the spring thaw. It was thin and just about to break. The dreaded word BANKRUPTCY came up over and over again, catching in the throat of our future but seeming to be the only way out.
A couple of days of de-compression later I woke up with the greatest peace and calm that had come over me while I was sleeping. God had spoken to me in my dreams that we were absolutely going to be okay financially. We had to have faith, for the answer was nowhere near in front of us, and we had to not spend, but we were going to be just fine. I woke my husband up glowing and radiating the conviction of this promise. I felt secure and sure and optimistic and hopeful, and knew if we just continued to WALK IN FAITH, NOT FEAR we would be okay. This incredible calm has vacillated many times over the last 3 weeks. As I returned to real life and the struggle with the steroids, the multiple directions they are pulling my body and mind in all at the same time, as the medical bills come flowing through the mailbox, as the number in our bank account reaches the single digits, it has been hard. I have had to constantly remind myself to get a grip...fear will swallow your whole life up if you let it! But if you ignore it, squash it, give it no credence, then it holds no relevance. We have made going to church a priority, knowing we need the spiritual nourishment communing with our fellow believers gives us. I have also written that check with blind faith to put in the collection basket, knowing there are so many others far less fortunate than we are and believing that in blessing others, we will be blessed.
The phone call came this morning. The answer to the prayers, the fulfillment of the promise God gave me those few weeks back. It is not free money. No never free. It has to be paid back, but it is enough to keep our heads above water and keep us going...what always seems to be the case. We are always blessed with just enough to get by. Nothing more, but no catastrophic carnage either. Once again it has happened and I can breathe a sigh of relief, knowing I can pay my medical bills and consolidate high-interest debt into a low-interest manageable payment. I can keep on seeking wellness and health without fear of eviction from my apartment or repossession of my vehicles. Or refusal of my litany of doctors to keep treating me because I cannot pay them. Thank you, dear Lord, for giving us this reward for our faithful obedience. These are the prayer and verses I say daily, meditate on with my rosary, chant endlessly in the face of manic and frenzy, remind myself of every time fear slimes its gooey sucking treachery into my soul:
Father, Son and Holy Spirit have mercy on me.
I thank you, rejoice in you and submit to your will.
Please use me for your glory.
Amen
Yea, though I walk through the valley of the shadow of death, I will fear no evil, for THOU art with me. Psalm 23:4
I shall not die, but live, and declare the works of the LORD.
Psalm 118:17
Over and over again, every time dread and panic grip my heart, I keep coming back to this. I know my greater purpose on this earth has not been fulfilled, and I keep revisiting the fact that I nearly died just 1 month ago but did not because I still have work to do. Work that can only be accomplished if my sights are right. Oh God is so good...
Thanks for joining,
Leah
Sunday, August 29, 2010
So Many Ups & Downs
Wow, yesterday was 1 tumultuous Saturday! It started off well enough with my natural 8:30am wake-up finding me revived and bounding out the door to take the fur-babies on our usually reserved-for-the-weekdays walk. I was eagerly anticipating a guilt (and chewed-up shoes) free day of play for my husband and I to indulge in if they are well exercised and tended to. I happily blogged and caught up on Facebook until he woke and started hollarin' at me from the bedroom. I had barricaded it from the dogs to ensure as much sleep for him as possible. I then made the breakfast of my dreams; grits, bacon, scrambled eggs & plump, juicy red grapes (so great for that dreaded weight-gain!) and relished every last bite of high-cholesterol ecstasy. Then I started doing the dishes and the frantic sets in...so by the time I am finally able to get in the shower and ride out the mood swings half the day is already behind me. Whatever. We head to the coffee shop so I can write and my husband can study the theory of acting. At this point I am on 1 Flexeril and 1/8 Xanax and have stabilized both my mood and manic, no easy feat. Then its time to go pick up Grandma and Auntie from the airport. Baby-puppy-girl pukes all over my poor 93 year-old Grandmother (she was such a good sport and I felt so bad), and the whole rest of the day seemed to de-rail from there. Up and down, back and forth...we vacillated over our next move; fighting over giving up and going home sad and forlorn, forging ahead with our Saturday afternoon plans of rest and relaxation we so desperately need at our favorite pet-friendly lobby-bar happy-hour, changing plans all together and doing something completely different or simply allowing the frustration of our circumstances take-over, surrendering to the flaming rage of emotions pouring out of both of us.
Money is such a major problem! We simply don't have any to spare! Not enough to pay our bills, let alone afford a standard of living that allows even a taste of enjoyment. We have worked so hard for so many years and are in our mid 30's (did I really just say that?) and want and need a little bit of of rest & relaxation and fun along the way... Every experience out is met with such high expectations, such a tremendous amount of reward needing to come from each effort, and that is simply exhausting! But sitting cooped up in this house is exhausting too, feeling like life is happening out there while we are stuck in here just imagining or remembering our dreaming about what could be. Since all my husband does is work and I have not been working at all our only social contact happens on the weekends. I find I am desperate to pack as much into each day as possible, ignoring the need to simply just be and what that truly does for ones soul. Trying to find a balance, always trying to find a balance. We decided to forge ahead and went to the lobby bar anyway, me with me agua con mineral , more Flexeril & Xanax to reel me in and my husband tossin' back Manhattan's, munching on our half-priced appetizers. Then a monsoon hits and we have to dive under cover and once the food is gone so is the rain and any attempt at relaxation. And of course we spent more than we wanted to, and once again the up & down of mood and disappointment and regret Richter-scale our stability... It was a truly exhausting day!
So I woke up this morning with resolve to chill out! The only absolute was church, the rest of the day flowing and free to bend with the whims of the moment. It has been a much better day indeed...and shows me what one of my biggest problem is, both on steroids and just being who I am. I have got to let more roll off my back! I have got to learn how to go with the flow! I have got to remember how to take a big swig of "fuck it" and not get so damn upset over every little thing that is out of my control, because ultimately everything is out of my control. Fibromyalgia will give you a hard and fast crash course in that truth. Sunday night finds me once again with new resolve...to just do better than the week before. Keep up the good progress and build tiny little increments of improvement on top of that. Nothing sweeping or drastic, just slow and steady and stable. That is where the art of perfecting living comes in, recognizing enough to know when you need to change...and when you just need to chill.
Thanks for joining,
Leah
Money is such a major problem! We simply don't have any to spare! Not enough to pay our bills, let alone afford a standard of living that allows even a taste of enjoyment. We have worked so hard for so many years and are in our mid 30's (did I really just say that?) and want and need a little bit of of rest & relaxation and fun along the way... Every experience out is met with such high expectations, such a tremendous amount of reward needing to come from each effort, and that is simply exhausting! But sitting cooped up in this house is exhausting too, feeling like life is happening out there while we are stuck in here just imagining or remembering our dreaming about what could be. Since all my husband does is work and I have not been working at all our only social contact happens on the weekends. I find I am desperate to pack as much into each day as possible, ignoring the need to simply just be and what that truly does for ones soul. Trying to find a balance, always trying to find a balance. We decided to forge ahead and went to the lobby bar anyway, me with me agua con mineral , more Flexeril & Xanax to reel me in and my husband tossin' back Manhattan's, munching on our half-priced appetizers. Then a monsoon hits and we have to dive under cover and once the food is gone so is the rain and any attempt at relaxation. And of course we spent more than we wanted to, and once again the up & down of mood and disappointment and regret Richter-scale our stability... It was a truly exhausting day!
So I woke up this morning with resolve to chill out! The only absolute was church, the rest of the day flowing and free to bend with the whims of the moment. It has been a much better day indeed...and shows me what one of my biggest problem is, both on steroids and just being who I am. I have got to let more roll off my back! I have got to learn how to go with the flow! I have got to remember how to take a big swig of "fuck it" and not get so damn upset over every little thing that is out of my control, because ultimately everything is out of my control. Fibromyalgia will give you a hard and fast crash course in that truth. Sunday night finds me once again with new resolve...to just do better than the week before. Keep up the good progress and build tiny little increments of improvement on top of that. Nothing sweeping or drastic, just slow and steady and stable. That is where the art of perfecting living comes in, recognizing enough to know when you need to change...and when you just need to chill.
Thanks for joining,
Leah
Saturday, August 28, 2010
Channeling My Inner Scarlett
I grew up on the movie Gone With The Wind... A tale of a dark and troubled time in our countries history, a necessary time. This telling of America's ugly past is puff-pastry layered over with the icing of one spit-fire of a heroin and her determination not to let life get her down. Fiddle-de-de! So when I found out Gone With The Wind was masterfully updated and available on blu-ray I was elated! My husband, with his newly passioned craft for acting, needs to familiarize himself with the classics and I saw this as an awesome opportunity to experience Tera as she had never been seen before; bright, vivid, crisp & clear. So we sat down last weekend to watch the tale unfold in all its glory. I was enraptured, romanced, taken back to another time...not only by what was unfolding on the rich and descriptively detailed screen in front of me but also by the memories of the impact this film had on my youth...and my husband hated it!
"This is racist!" he proclaimed. "No shit!" I said. "What a spoiled brat, I don't get her motivation. Am I supposed to feel sorry for her or something?" he said. I just smiled. This was the man that hated "On The Road", not understanding or identifying with the self-indulgent beatnik generation walking away from their responsibilities to simply live and experience the passions of being. He has seen too much pain in his life, worked too damn hard to keep our heads above water, stuffed his wants and dreams and desires deep down to forge ahead into pure survival. He feels no compassion for the dizzy, spoiled and over-privileged that dominate our society. Those originating in the 1960's counter-culture and continuing on through today's coddled youth. I just laughed and told him he was missing the point...a woman that would not be beat down by the harshness of a world she was ill-prepared to live in, who did what had to be done to keep herself and those she loved going. Although she compromised morals, ethics, integrity and honor many times over, she survived. No, she thrived!
"I'm not going to think about this today. I will think about it tomorrow. After all, tomorrow is another day!" Scarlett O'Hara's famed mantra is well suited to the Fibromyalgia patient. How many times have we all crumpled down into a completely frustrated lump of exhaustion, having finally given into the pain and fatigue pulling our bodies and minds down the rabbit hole of despair? Nothing that so desperately needed to be accomplished had been done. Laundry, bills, dishes, kids, all the necessities of life that keep piling up, causing more anguish and sorrow simply by still needing our attention. The guilt if one happens to have others in their life that are picking up the slack, the fear if one does not. I remember when I returned to work after 7 months on disability, everyone kept commenting to me that my house must be so clean and organized (remembering the type-A go-getter of my pre-Fibromyalgia self) and I would just nod my head from side to side and say, "Actually, I sat and watched the dust and laundry and dishes, everything pile up around me, too sick to do anything about it". They would give me the yeah right look, hardly believing or imagining life on those terms.
Living in the now is one of the hardest qualities of life to master for a well person, but a sick one? Me-oh-my! But let's try for some raw honesty here for a second. There is always going to be more to get done than time, energy or motivation to do it. There are always going to be expectations we simply cannot meet, self-imposed or otherwise. There are always going to be totally-mundane but seemingly-crucial tasks at hand. So we can beat ourselves up with failure, disappointment and frustration or we can decide to look at those few things that do get done as amazing, with pride! If the bed gets made, enjoy the way it looks for that 1 day, for it may not happen again for a while. If the dishes get washed, go out of your way to meander through the kitchen and notice how clean and pretty it looks. It could be weeks until you see it that way again! If the laundry gets sorted, washed, dried, folded and put away all in the same day, go buy yourself a Gold Star and scream from the rooftops, because you sure as hell deserve it! It is up to us to change our mind-set away from one of disappointment and failure, expecting the performance of our pre-Fibromyalgia selves, and toward pride and newly-adopted realistic expectation. What is important in life are the relationships we have, those we love and surround ourselves with, by choice or circumstance. Those people are the easiest to lash-out the internal misery we reside in every minute of every day on. But they are where the limited and delicate energy a Fibromyalgia patient has should invest their efforts. Forget about the bed, go get take-out, read your kid a book and kiss your significant other/best friend/biggest supporter, telling them you love them and hopefully worming out a calf-massage in the process. And don’t forget our sister Scarlett, what an inspiration she can be to us all...for she truly had her priorities right. After all, tomorrow is another day!
Thanks for joining,
Leah
"This is racist!" he proclaimed. "No shit!" I said. "What a spoiled brat, I don't get her motivation. Am I supposed to feel sorry for her or something?" he said. I just smiled. This was the man that hated "On The Road", not understanding or identifying with the self-indulgent beatnik generation walking away from their responsibilities to simply live and experience the passions of being. He has seen too much pain in his life, worked too damn hard to keep our heads above water, stuffed his wants and dreams and desires deep down to forge ahead into pure survival. He feels no compassion for the dizzy, spoiled and over-privileged that dominate our society. Those originating in the 1960's counter-culture and continuing on through today's coddled youth. I just laughed and told him he was missing the point...a woman that would not be beat down by the harshness of a world she was ill-prepared to live in, who did what had to be done to keep herself and those she loved going. Although she compromised morals, ethics, integrity and honor many times over, she survived. No, she thrived!
"I'm not going to think about this today. I will think about it tomorrow. After all, tomorrow is another day!" Scarlett O'Hara's famed mantra is well suited to the Fibromyalgia patient. How many times have we all crumpled down into a completely frustrated lump of exhaustion, having finally given into the pain and fatigue pulling our bodies and minds down the rabbit hole of despair? Nothing that so desperately needed to be accomplished had been done. Laundry, bills, dishes, kids, all the necessities of life that keep piling up, causing more anguish and sorrow simply by still needing our attention. The guilt if one happens to have others in their life that are picking up the slack, the fear if one does not. I remember when I returned to work after 7 months on disability, everyone kept commenting to me that my house must be so clean and organized (remembering the type-A go-getter of my pre-Fibromyalgia self) and I would just nod my head from side to side and say, "Actually, I sat and watched the dust and laundry and dishes, everything pile up around me, too sick to do anything about it". They would give me the yeah right look, hardly believing or imagining life on those terms.
Living in the now is one of the hardest qualities of life to master for a well person, but a sick one? Me-oh-my! But let's try for some raw honesty here for a second. There is always going to be more to get done than time, energy or motivation to do it. There are always going to be expectations we simply cannot meet, self-imposed or otherwise. There are always going to be totally-mundane but seemingly-crucial tasks at hand. So we can beat ourselves up with failure, disappointment and frustration or we can decide to look at those few things that do get done as amazing, with pride! If the bed gets made, enjoy the way it looks for that 1 day, for it may not happen again for a while. If the dishes get washed, go out of your way to meander through the kitchen and notice how clean and pretty it looks. It could be weeks until you see it that way again! If the laundry gets sorted, washed, dried, folded and put away all in the same day, go buy yourself a Gold Star and scream from the rooftops, because you sure as hell deserve it! It is up to us to change our mind-set away from one of disappointment and failure, expecting the performance of our pre-Fibromyalgia selves, and toward pride and newly-adopted realistic expectation. What is important in life are the relationships we have, those we love and surround ourselves with, by choice or circumstance. Those people are the easiest to lash-out the internal misery we reside in every minute of every day on. But they are where the limited and delicate energy a Fibromyalgia patient has should invest their efforts. Forget about the bed, go get take-out, read your kid a book and kiss your significant other/best friend/biggest supporter, telling them you love them and hopefully worming out a calf-massage in the process. And don’t forget our sister Scarlett, what an inspiration she can be to us all...for she truly had her priorities right. After all, tomorrow is another day!
Thanks for joining,
Leah
Friday, August 27, 2010
Are You Ready For The Fight Of Your Life?
Because that's what its going to take if you ever want to have anything resembling a quality of life again after Fibromyalgia knocks on your door and worms its slimy miserable self into your life. At least that's what it took me. As I am networking with a multitude of TOTALLY AWESOME AND AMAZING fellow "fibrates" through Facebook I keep seeing a theme...so many people at different stages. Some are broken and defeated, some are hanging off the cliff of optimism by their chipped and cracked fingernails, some have taken control and have life managed so it works for them. Not the same as before, but somehow livable. Anyone who has ever had this knows there are plenty of stages that are not livable. There are so many different forms this disease takes on. It effects everyone uniquely and there are usually so many other health complications we all suffer from, desperate to know if they are "related", but never getting an answer. The constants I am finding seem to be:
1) It will not kill you, no matter how badly you want to kill yourself
2) It will take EVERYTHING from you if you let it
3) There is a significant amount of self-pity, fear & depression each person must go through
4) This is absolutely something that the 5 Stages of Grief apply to, but the order is often different:
Kubler-Ross model: Denial, Anger, Bargaining, Depression & Acceptance
Leah Tyler's Fibromyalgia model: Denial, Bargaining, Depression, Acceptance & Anger
DENIAL- Doctor after doctor telling you there is nothing wrong with you and it's all in your head, and part of you possibly believing them because this makes absolutely no sense?
BARGAINING- With yourself to just get over it already! And with those we love, work with & are friends with to understand what is happening is indeed real.
DEPRESSION- Because this is real and one is no longer functioning like a normal person. The guilt, anger, frustration, panic, sorrow, anguish and PURE UNBEARABLE PAIN take over. If that's not depressing I don't know what is.
ACCEPTANCE- This is real, this is happening to me, and I have to do something about it. No doctor or drug or treatment will wave its magic wand and take it away. For whatever reason this is the course my life has taken and I can lay down and take it or fight to see another day.
ANGER- (by far my most favorite) GO TO HELL FIBROMYALGIA! You have stripped me bare, destroyed my life, my light, my laughter, my security, my relationships and I AM NOT GIVING YOU ANY MORE OF ME! So if it is the last thing I do on God's green earth I will get something close to a quality of life back...
And that is when it really gets interesting. Without the fight, without the anger, I do not believe I ever would have recovered to the point of managed. I had too much to live for and could not comprehend at the age of 28 the rest of my life was going to be spent as a disabled invalid. But how does a person that is in so much PAIN find fight? How does someone who has been broken down and beaten and pulverized into mush re-construct their mental fortitude enough to INSIST on repairing their broken body, soul and psyche? That is where the inner strength comes in that only the truly marvelous in life get to discover about themselves. That is the depth of character and quality a person possesses that roars its raging lion head at the circumstances in life beating them down, takes a huge fleshy chunk out of it and keeps on ripping and tearing away at it until the lion stands proud and tall on top of the stripped carcass of disease.
Managing Fibromyalgia was without a doubt the hardest thing I have ever gone through in my life. The disease itself is bad enough, but the doubt and lack of compassion from the world at large creeps deep into the heart of a person and inflicts wounds so broad and scaring they are darn near impossible to recover from. As a person looses their ability to work and support themselves, parent their children, engage with their significant other, maintain friendships, perform basic duties (like showering and making the bed), participate in a social life, laugh, play or love, the despair and hopelessness can swallow you whole! There were people in my life that criticized me harshly for stepping outside the confines of modern medicine and embracing a holistic approach. Those same people would be sitting here doubting the validity of my illness today if I were still that crumbling-quivering-unable-to-function mess of a woman. But I am not. I charted my own course, forged ahead, learned how to stop giving a rats-woo-ha about what anyone else thought, stopped looking for acceptance and approval where none was to be found and clung to strength and hope I did not know I possessed.
You, my dear Fibro-friends, are the chosen ones. You are the ones that must grab your life, whatever is left of it by the time you are forced to tap deep into your internal strength, shake it silly, believe in yourself and forge on to build a better tomorrow. Keep "interviewing" doctors until you find 1 that believes you and listens to you. Let the world know you are hurting, but you are working on making it better. Project a life of confused sanity, not sloppy despair. I know my worst doctor appointments were the desperate ones. The ones where I went in crying, needing, forlorn for help, only to be dismissed and turned away. See they don't know what to do with us, we are messy and complicated. Our diseases are too new to their scientific minds so therefore are dismissed. But let me ask you one question...Will medicine or science ever progress or discover anything new? Of course it will! And one day we will be understood. Till then, do the best you can, love yourself and BELIEVE IN A BETTER TOMORROW, for if you don't it will never come.
Thanks for joining,
Leah
1) It will not kill you, no matter how badly you want to kill yourself
2) It will take EVERYTHING from you if you let it
3) There is a significant amount of self-pity, fear & depression each person must go through
4) This is absolutely something that the 5 Stages of Grief apply to, but the order is often different:
Kubler-Ross model: Denial, Anger, Bargaining, Depression & Acceptance
Leah Tyler's Fibromyalgia model: Denial, Bargaining, Depression, Acceptance & Anger
DENIAL- Doctor after doctor telling you there is nothing wrong with you and it's all in your head, and part of you possibly believing them because this makes absolutely no sense?
BARGAINING- With yourself to just get over it already! And with those we love, work with & are friends with to understand what is happening is indeed real.
DEPRESSION- Because this is real and one is no longer functioning like a normal person. The guilt, anger, frustration, panic, sorrow, anguish and PURE UNBEARABLE PAIN take over. If that's not depressing I don't know what is.
ACCEPTANCE- This is real, this is happening to me, and I have to do something about it. No doctor or drug or treatment will wave its magic wand and take it away. For whatever reason this is the course my life has taken and I can lay down and take it or fight to see another day.
ANGER- (by far my most favorite) GO TO HELL FIBROMYALGIA! You have stripped me bare, destroyed my life, my light, my laughter, my security, my relationships and I AM NOT GIVING YOU ANY MORE OF ME! So if it is the last thing I do on God's green earth I will get something close to a quality of life back...
And that is when it really gets interesting. Without the fight, without the anger, I do not believe I ever would have recovered to the point of managed. I had too much to live for and could not comprehend at the age of 28 the rest of my life was going to be spent as a disabled invalid. But how does a person that is in so much PAIN find fight? How does someone who has been broken down and beaten and pulverized into mush re-construct their mental fortitude enough to INSIST on repairing their broken body, soul and psyche? That is where the inner strength comes in that only the truly marvelous in life get to discover about themselves. That is the depth of character and quality a person possesses that roars its raging lion head at the circumstances in life beating them down, takes a huge fleshy chunk out of it and keeps on ripping and tearing away at it until the lion stands proud and tall on top of the stripped carcass of disease.
Managing Fibromyalgia was without a doubt the hardest thing I have ever gone through in my life. The disease itself is bad enough, but the doubt and lack of compassion from the world at large creeps deep into the heart of a person and inflicts wounds so broad and scaring they are darn near impossible to recover from. As a person looses their ability to work and support themselves, parent their children, engage with their significant other, maintain friendships, perform basic duties (like showering and making the bed), participate in a social life, laugh, play or love, the despair and hopelessness can swallow you whole! There were people in my life that criticized me harshly for stepping outside the confines of modern medicine and embracing a holistic approach. Those same people would be sitting here doubting the validity of my illness today if I were still that crumbling-quivering-unable-to-function mess of a woman. But I am not. I charted my own course, forged ahead, learned how to stop giving a rats-woo-ha about what anyone else thought, stopped looking for acceptance and approval where none was to be found and clung to strength and hope I did not know I possessed.
You, my dear Fibro-friends, are the chosen ones. You are the ones that must grab your life, whatever is left of it by the time you are forced to tap deep into your internal strength, shake it silly, believe in yourself and forge on to build a better tomorrow. Keep "interviewing" doctors until you find 1 that believes you and listens to you. Let the world know you are hurting, but you are working on making it better. Project a life of confused sanity, not sloppy despair. I know my worst doctor appointments were the desperate ones. The ones where I went in crying, needing, forlorn for help, only to be dismissed and turned away. See they don't know what to do with us, we are messy and complicated. Our diseases are too new to their scientific minds so therefore are dismissed. But let me ask you one question...Will medicine or science ever progress or discover anything new? Of course it will! And one day we will be understood. Till then, do the best you can, love yourself and BELIEVE IN A BETTER TOMORROW, for if you don't it will never come.
Thanks for joining,
Leah
Thursday, August 26, 2010
When What I Want Meets Reality...
...it sucks! Its easy for me to sit in my cozy little apartment, tucked comfortably away in the air-conditioning from the 108 degree weather, the pain of life with Fibromyalgia not nearly as real since I am on steroids and off work, watching the puppies frolic and play and typing on my computer all day. It's easy to send my husband off to work to make all the money and treat myself as though I am "recovering" (from 2 strokes so I don't feel that guilty), knowing I am, but with such luxury! My only obligations are to cook (which I do a lot of since we eat only real food), keep the house up, dogs taken care of, pay the bills, do the laundry, etc. Easy house-wifey things that I can usually accomplish with ease. They used to take on a life of their own when I was oh-so-sick with CFS & Fibromyalgia, pulling me into a downward spiral of flare-ups and misery...but we all know what that is about. Its easy to concoct a fantasy life of the future in my head that I am hoping and praying for while I am sitting here in the now doing nothing but dreaming. And then it comes time to pay the bills...and the reality that my situation is still quite bleak hits me.
In April of this year my husband and I decided to slow down the ship of goals and ambitions we were sailing on and completely turn it around in the opposite direction. He is miserable working in corporate America. Stifled, constrained, bored, feeling dead where passion used to reside. I am sick of the rat-race, the never ending quest to keep up with the expectations and performance of the retail dollar. Something changed, something stirred inside me and simultaneously within my husband. My desire was to sell everything and high-tail it down to South America to get lost among the masses. I wanted to, needed to do something so dramatic and crazy and different it would change the course of our lives forever. It all happened the day I wrote "An Extraordinary Life". I had reached my max. I was done. Randomly enough after I wrote that blog my husband called me on his way home from work and before I even got a word out told me he was done trudging along on the hamster-wheel of life. Something had to give, something had to change. The future we had set our sights on and were working so hard for was not the future he wanted and he needed more. I sat there dumbfounded and told him we really needed to talk when he got home. So home he comes, I read him my blog, my written words mirroring his spoken desires, and both our eyes went wild with possibility. "But that's just not me, that's just too On The Road beatnik" he said. My spirits dampered a little. The reality of life in a foreign land with no money and health problems was not nearly as attractive as the fantasy.
We moved out of the office and I went to the kitchen to start cooking dinner. He went into the other room and emerged a few moments later, his eyeballs gleaming and his face full of pent-up excitement as he declared "I want to be an actor!". Oh shit, I thought to myself. I grew up in Los Angeles amidst the struggling musician set and knew what a fake and shallow existence it was. I wanted nothing to do with it and went out of my way to marry a business man so my adult life would not center around struggle and that illusive quest for fame. Oh the joke is on me, it had come full circle! As I looked at the most precious man in the world, declaring the deepest desire in his heart, I knew it was just...right. See this is a topic that has popped its ugly little head up and been hammered back down repetitively during the last 11 years. It started when we lived in LA and were just beginning our life together. He was working hard on his education but was constantly told he should act. He dismissed it for a variety of reasons. He needed to prove himself in a legitimate way, I was entirely too insecure to support it, he joked that there was no money in it, knowing for the majority of dream-seekers flocking to Hollywood that was true. So he moved on to a career that would grant him a life of wealth and excess, believing that's what would make him happy. He has now been out of college 5 years and is so unbelievably miserable, finally realizing a life without passion is not a life worth living.
I gave him my full support, 2 thumbs up, go ahead... I trust him enough to know he is not going to chuck our life away just to follow this dream, but that he had to at least start exploring the possibility of this deeply buried passion. The courage it took him to face his true desire gave me the strength to believe in myself as a writer. I began to explore career paths surrounding this genre and became enraptured with getting a masters in English Literature. We signed up for fall classes at the community college and resumed life, much more optimistic, hopeful and bewildered than we were before. And then my strokes hit, my income dried up and we were forced to once again re-evaluate life with all its brilliant complexities. I dropped my English Lit class and 2nd level Spanish, settling for 1st year conversation as a way to maintain what I had worked so hard for last semester. I was not approved for financial aid and had no way to pay for them. I also wanted to take it easy on myself after the strokes and knew how much dedication it took to get that "A" en espanol.
Yesterday his acting class started so I went onto the college website to verify time, location and book requirements. Low and behold I discovered I HAD BEEN APPROVED FOR FINANCIAL AID! Oh I saw red, green, blue, purple and orange! Why was I just finding this out right now, the week school had already started? I could so seriously use the cash and had just set my dream aside for another, more convenient time, as if they ever exist. I was prepared to get a part-time job through some temp or staffing agency in the next few months and get off these steroids and anti-depressants and really tackle life and wellness with a holistic fervor. But that "what if" door opened itself just a crack again and I ran away with the options. Should I scramble myself together and forget the job and salvage this semester, knowing it is within my reach? Or maybe I should consider the timing of this a blessing in disguise, knowing that flinging myself into school full-time is entirely too premature at this point in my post-stroke recovery. I came to terms with this information and believe I am going to forge ahead as planned, accepting financial aid next semester and seeing where life takes me between now and then. I am happy to say his acting class is all he thought it would be and more. I am so proud of him, drudging through 12 hour work-days to then spend 4 hours in night class once a week, still trying to balance the gym, getting enough sleep to function productively on, our marriage and a little bit of fun and happiness. When he came home last night and was babbling on and on with such excitement and enthusiasm and pure confidence it became easier for me to accept that this is his time to shine, mine to heal, and once again we are going to be just fine.
Thanks for joining,
Leah
In April of this year my husband and I decided to slow down the ship of goals and ambitions we were sailing on and completely turn it around in the opposite direction. He is miserable working in corporate America. Stifled, constrained, bored, feeling dead where passion used to reside. I am sick of the rat-race, the never ending quest to keep up with the expectations and performance of the retail dollar. Something changed, something stirred inside me and simultaneously within my husband. My desire was to sell everything and high-tail it down to South America to get lost among the masses. I wanted to, needed to do something so dramatic and crazy and different it would change the course of our lives forever. It all happened the day I wrote "An Extraordinary Life". I had reached my max. I was done. Randomly enough after I wrote that blog my husband called me on his way home from work and before I even got a word out told me he was done trudging along on the hamster-wheel of life. Something had to give, something had to change. The future we had set our sights on and were working so hard for was not the future he wanted and he needed more. I sat there dumbfounded and told him we really needed to talk when he got home. So home he comes, I read him my blog, my written words mirroring his spoken desires, and both our eyes went wild with possibility. "But that's just not me, that's just too On The Road beatnik" he said. My spirits dampered a little. The reality of life in a foreign land with no money and health problems was not nearly as attractive as the fantasy.
We moved out of the office and I went to the kitchen to start cooking dinner. He went into the other room and emerged a few moments later, his eyeballs gleaming and his face full of pent-up excitement as he declared "I want to be an actor!". Oh shit, I thought to myself. I grew up in Los Angeles amidst the struggling musician set and knew what a fake and shallow existence it was. I wanted nothing to do with it and went out of my way to marry a business man so my adult life would not center around struggle and that illusive quest for fame. Oh the joke is on me, it had come full circle! As I looked at the most precious man in the world, declaring the deepest desire in his heart, I knew it was just...right. See this is a topic that has popped its ugly little head up and been hammered back down repetitively during the last 11 years. It started when we lived in LA and were just beginning our life together. He was working hard on his education but was constantly told he should act. He dismissed it for a variety of reasons. He needed to prove himself in a legitimate way, I was entirely too insecure to support it, he joked that there was no money in it, knowing for the majority of dream-seekers flocking to Hollywood that was true. So he moved on to a career that would grant him a life of wealth and excess, believing that's what would make him happy. He has now been out of college 5 years and is so unbelievably miserable, finally realizing a life without passion is not a life worth living.
I gave him my full support, 2 thumbs up, go ahead... I trust him enough to know he is not going to chuck our life away just to follow this dream, but that he had to at least start exploring the possibility of this deeply buried passion. The courage it took him to face his true desire gave me the strength to believe in myself as a writer. I began to explore career paths surrounding this genre and became enraptured with getting a masters in English Literature. We signed up for fall classes at the community college and resumed life, much more optimistic, hopeful and bewildered than we were before. And then my strokes hit, my income dried up and we were forced to once again re-evaluate life with all its brilliant complexities. I dropped my English Lit class and 2nd level Spanish, settling for 1st year conversation as a way to maintain what I had worked so hard for last semester. I was not approved for financial aid and had no way to pay for them. I also wanted to take it easy on myself after the strokes and knew how much dedication it took to get that "A" en espanol.
Yesterday his acting class started so I went onto the college website to verify time, location and book requirements. Low and behold I discovered I HAD BEEN APPROVED FOR FINANCIAL AID! Oh I saw red, green, blue, purple and orange! Why was I just finding this out right now, the week school had already started? I could so seriously use the cash and had just set my dream aside for another, more convenient time, as if they ever exist. I was prepared to get a part-time job through some temp or staffing agency in the next few months and get off these steroids and anti-depressants and really tackle life and wellness with a holistic fervor. But that "what if" door opened itself just a crack again and I ran away with the options. Should I scramble myself together and forget the job and salvage this semester, knowing it is within my reach? Or maybe I should consider the timing of this a blessing in disguise, knowing that flinging myself into school full-time is entirely too premature at this point in my post-stroke recovery. I came to terms with this information and believe I am going to forge ahead as planned, accepting financial aid next semester and seeing where life takes me between now and then. I am happy to say his acting class is all he thought it would be and more. I am so proud of him, drudging through 12 hour work-days to then spend 4 hours in night class once a week, still trying to balance the gym, getting enough sleep to function productively on, our marriage and a little bit of fun and happiness. When he came home last night and was babbling on and on with such excitement and enthusiasm and pure confidence it became easier for me to accept that this is his time to shine, mine to heal, and once again we are going to be just fine.
Thanks for joining,
Leah
Wednesday, August 25, 2010
Getting Off Cymbalta
Cymbalta is without a doubt one of the worst medications I have ever had the horror of coming off of. I took Lyrica & Cymbalta for a couple of years, Cymbalta first. I was prescribed it in the hospital during my last pancreatitis attack in 2007 to combat the pain I was using Percocet to manage. It was an awful experience all around, but a few days after starting Cymbalta I started this sticky sweat that just made me feel gross and awful. While I was in the hospital for 6 days I thought it was the hospital inducing the nasty slick, but upon returning home I could not get away from it! I could not sleep without drenching myself, constantly felt dirty and sweated out of my head profusely (really helpful for good hair days!). I remember visiting my auntie's house for dinner one evening and I had to go into her bathroom and blow-dry my scalp 3 separate times my head was so soaked. I looked like a wet dog sitting at the dinner table! I was not aware this was a documented side-effect of Cymbalta until I was perusing through Prevention magazine 1 evening and started reading the fine print on the drug's advertisement. It was like a light bulb went off. So that's what all the sweating was about!
I suppose it helped with the pain, although I still had more than my fair share to go around. I was on Percocet daily to get through work and life but was desperate for anything...anything to damper the throbbing, stabbing, aching fire that coursed through my body unrelentlessly. So I stayed on the drug for 2 years until I felt managed (false managed with high doses of Lyrica) and was off Percocet. After complaining of serious weight gain (like 50 lbs.) to my doctor and fear of an imminent pancreatitis attack, I was told I would never get off Lyrica or Cymbalta. He told me to go on a medically supervised starvation diet and also gave me a referral to a Bariatric surgeon. Woahhhhh! Are you kidding me? All of this because you have no idea how to treat my conditions and don't want the review of narcotic prescriptions on your record? What ever happened to "Do no harm"?
So I went on a holy quest to get off as many prescriptions as possible, blaming them for my weight-gain and fearing the consequences on my organs of a lifetime on so many. Cymbalta was my first attack. I bought a bottle of empty capsules and split the caplets in half (I am in no way advocating anyone do this, my new and wonderful doctor was very upset with me because the dose is so variable that way, but just for informational purposes that is what I did). After about a month I stopped all together. Oh I really should have cut the half in half but didn't. It was a brand-name prescription and too expensive. Shortly after stopping I started feeling withdrawal symptoms that must be like coming off some hard-core drug addiction! My insides felt like a telephone wire that had been snapped in half by lightening and was whipping and snaking around, cracking electricity with every contact. It would course through my veins and cause me to twitch and tremble. I felt like an eel, a shorted wire, a wet plug, in a word ELECTRIC. I was so moody and grouchy and angry and frustrated and negative. Emotional garbage came pouring out of me as I became consumed with every injustice that had ever been inflicted on me, intentional or otherwise. I had to cut off contact with certain family members, the pure anger pouring out of me was so great and I could not differentiate what was real and what was a magnified perception from the withdrawal. I sat at my computer and wrote and wrote and wrote, getting it all out on "paper", feeling completely justified and victimized and wronged. I became extremely negative at work and borderline suicidal. I started seeing a therapist again because I was fearful of my actions without honest accountability to another person.
What I glean now from this experience is that Cymbalta was masking psychosis from Lyrica, and once I was off Cymbalta the full experience of Lyrica took over. At this point I was with my new doctor at the Mayo Clinic and she upped Welbutrin to help with my anxiety and quickly switched me off Lyrica and back on Neurontin. I began to feel much better emotionally and mentally, but of course never anything easy, the pain came back! I did start loosing weight, though, and am extremely grateful for that. I have tried darn near everything out there to manage this disease that is so unbelievably destructive to living a decent life. Drugs, diet, exercise, acupuncture, more drugs, stress-management, lifestyle-management, disability, more supplements than 1 could possibly imagine, working barely part-time, more drugs, moving to a warm-weather climate, serious sleep-management...oh you name it and I have tried it. And I am managed! I can work, love, laugh and savor a little. No, I am not the woman I was before I got sick. But even though I had my physical health then I am much more mentally and emotionally full now. I am clear in mind and conscious. I know what I need out of life, where to put my priorities to get it done and what to just plain ignore because it will do nothing but suck me down. Through a variety of ailments I have also resolved to stick to "old" drugs. I am done with the new ones, too much is unknown. We are all different, each Fibromyalgia patient, and each person must keep trying until they find the right combination of lifestyle and medication management to get their life back. But as for me, Cymbalta, we are broken up, never getting back together again and I am sorry I ever met you!
Thanks for joining,
Leah
I suppose it helped with the pain, although I still had more than my fair share to go around. I was on Percocet daily to get through work and life but was desperate for anything...anything to damper the throbbing, stabbing, aching fire that coursed through my body unrelentlessly. So I stayed on the drug for 2 years until I felt managed (false managed with high doses of Lyrica) and was off Percocet. After complaining of serious weight gain (like 50 lbs.) to my doctor and fear of an imminent pancreatitis attack, I was told I would never get off Lyrica or Cymbalta. He told me to go on a medically supervised starvation diet and also gave me a referral to a Bariatric surgeon. Woahhhhh! Are you kidding me? All of this because you have no idea how to treat my conditions and don't want the review of narcotic prescriptions on your record? What ever happened to "Do no harm"?
So I went on a holy quest to get off as many prescriptions as possible, blaming them for my weight-gain and fearing the consequences on my organs of a lifetime on so many. Cymbalta was my first attack. I bought a bottle of empty capsules and split the caplets in half (I am in no way advocating anyone do this, my new and wonderful doctor was very upset with me because the dose is so variable that way, but just for informational purposes that is what I did). After about a month I stopped all together. Oh I really should have cut the half in half but didn't. It was a brand-name prescription and too expensive. Shortly after stopping I started feeling withdrawal symptoms that must be like coming off some hard-core drug addiction! My insides felt like a telephone wire that had been snapped in half by lightening and was whipping and snaking around, cracking electricity with every contact. It would course through my veins and cause me to twitch and tremble. I felt like an eel, a shorted wire, a wet plug, in a word ELECTRIC. I was so moody and grouchy and angry and frustrated and negative. Emotional garbage came pouring out of me as I became consumed with every injustice that had ever been inflicted on me, intentional or otherwise. I had to cut off contact with certain family members, the pure anger pouring out of me was so great and I could not differentiate what was real and what was a magnified perception from the withdrawal. I sat at my computer and wrote and wrote and wrote, getting it all out on "paper", feeling completely justified and victimized and wronged. I became extremely negative at work and borderline suicidal. I started seeing a therapist again because I was fearful of my actions without honest accountability to another person.
What I glean now from this experience is that Cymbalta was masking psychosis from Lyrica, and once I was off Cymbalta the full experience of Lyrica took over. At this point I was with my new doctor at the Mayo Clinic and she upped Welbutrin to help with my anxiety and quickly switched me off Lyrica and back on Neurontin. I began to feel much better emotionally and mentally, but of course never anything easy, the pain came back! I did start loosing weight, though, and am extremely grateful for that. I have tried darn near everything out there to manage this disease that is so unbelievably destructive to living a decent life. Drugs, diet, exercise, acupuncture, more drugs, stress-management, lifestyle-management, disability, more supplements than 1 could possibly imagine, working barely part-time, more drugs, moving to a warm-weather climate, serious sleep-management...oh you name it and I have tried it. And I am managed! I can work, love, laugh and savor a little. No, I am not the woman I was before I got sick. But even though I had my physical health then I am much more mentally and emotionally full now. I am clear in mind and conscious. I know what I need out of life, where to put my priorities to get it done and what to just plain ignore because it will do nothing but suck me down. Through a variety of ailments I have also resolved to stick to "old" drugs. I am done with the new ones, too much is unknown. We are all different, each Fibromyalgia patient, and each person must keep trying until they find the right combination of lifestyle and medication management to get their life back. But as for me, Cymbalta, we are broken up, never getting back together again and I am sorry I ever met you!
Thanks for joining,
Leah
Tuesday, August 24, 2010
Delusions Of Grandeur
My oh my has today found me in quite a state! I did much better eating yesterday, lots of veggies and no snacking and only 2 tiny little pieces of toffee after dinner. Marked improvement from my garbage-can-vacuum mouth last week! My stomach still feels bloated and full but not as bad. But the manic-shaking-Prednisone race I am on without Flexeril to calm it down sent me into over-productive mode and brought on a headache. I did manage to accomplish quite a bit, but then had to relent to medicating it away as I sat at my desk organizing paperwork, my body in a constant and deep state of frantic quiver and flutter. Once the muscle-relaxer kicks in its like someone is pushing on the FOOD button of my brain and all I want to do, think about, consider or ponder is eating! And then I started feeling quite low. My psychiatrist has me stepping down off Lexapro by next week due to the questionable relationship with the strokes and I have already reduced the Welbutrin dosage in half because of the low-seizure threshold so maybe that's what this is all about. But all I know is I am bewildered, confused, insecure, feeling completely out of control with my life and quite unhappy. I have my dream life, and I have my real life, and the bridge that I was building between the two has been wiped out in the storm of STILL MORE HEALTH PROBLEMS. These strokes really set me back, and I feel like once I can see the light at the end of the tunnel its really just the headlight of yet another train bearing down to flatten me once again. How much fight can 1 girl have inside her? How hard does life have to get before it gets any easier?
Yeah, yeah I know I need to count my blessings and live in faith not fear and take all of my own advice, but I just don't wanna right now! I wanna feel sorry for myself and wallow in self-pity and guilt over how badly my multitude of health problems have fucked our lives up. The debt is a never-ending mountain of a dump on top of our ambitions, hopes, dreams and possibilities. And now with this new health crisis I am out of work, have very little faith that I will be back anytime soon and racking up even more medical bills on top of feeling like a speed-freak that wants to do nothing but eat! What a horrible combo...I could at least get skinny out of this, one would think. But I digress...
So the life I strive for, the one I dream of, consists of natural health, holistic living, nurturing the spirit and giving to others. It also contains a steady stream of cash to facilitate all of this as well as afford a standard of living that allows a taste of all the goodness life has to offer. Is this delusional? Is striving for life on my terms completely unrealistic and shallow? Is pinning all my hopes and dreams on some vague and self-invented career as a writer just the place my brain has created to avoid having to face the reality of my now? Is simply believing not enough? Oh I am so confused, and as my husband begins his class to facilitate his dream career tomorrow he is feeling the same thing. 2 Negative Nellie's never helped each other accomplish much, now have they?
Deep in my heart I know this is the process I must get through. I gave myself a false illusion of progress, hope and security with the anti-depressants. Now I must face even greater problems without them. So it all comes back to living holistically. Meditate, don't medicate. Forgive myself, don't flog myself. Allow my feelings to surface but don't give into every self-destructive impulse they pull me towards. Am I stronger than depression, pancreatitis, Fibromyalgia and strokes? HELL YEAH I AM...I just have to go find that girl now...
Thanks for joining,
Leah
Yeah, yeah I know I need to count my blessings and live in faith not fear and take all of my own advice, but I just don't wanna right now! I wanna feel sorry for myself and wallow in self-pity and guilt over how badly my multitude of health problems have fucked our lives up. The debt is a never-ending mountain of a dump on top of our ambitions, hopes, dreams and possibilities. And now with this new health crisis I am out of work, have very little faith that I will be back anytime soon and racking up even more medical bills on top of feeling like a speed-freak that wants to do nothing but eat! What a horrible combo...I could at least get skinny out of this, one would think. But I digress...
So the life I strive for, the one I dream of, consists of natural health, holistic living, nurturing the spirit and giving to others. It also contains a steady stream of cash to facilitate all of this as well as afford a standard of living that allows a taste of all the goodness life has to offer. Is this delusional? Is striving for life on my terms completely unrealistic and shallow? Is pinning all my hopes and dreams on some vague and self-invented career as a writer just the place my brain has created to avoid having to face the reality of my now? Is simply believing not enough? Oh I am so confused, and as my husband begins his class to facilitate his dream career tomorrow he is feeling the same thing. 2 Negative Nellie's never helped each other accomplish much, now have they?
Deep in my heart I know this is the process I must get through. I gave myself a false illusion of progress, hope and security with the anti-depressants. Now I must face even greater problems without them. So it all comes back to living holistically. Meditate, don't medicate. Forgive myself, don't flog myself. Allow my feelings to surface but don't give into every self-destructive impulse they pull me towards. Am I stronger than depression, pancreatitis, Fibromyalgia and strokes? HELL YEAH I AM...I just have to go find that girl now...
Thanks for joining,
Leah
Monday, August 23, 2010
Irritable What Syndrome?
Since I have been home from the hospital my, uh um, bathroom habits have not quite returned to regular. The rest of this post is going to be about this topic, so if you don't care or don't want to know skip today and I will return to my version of normal, or at least less offensive, tomorrow. I am sure the IV narcotics they pushed me full of every 4 hours in the ICU acted as a nice "binder" in my system. Combine that with no food for those 3 days, the following week or so on Percocet for the headaches, a major reduction in my supplements and activity level, generally ignoring the whole thing during my steroid-pump-up-wild week when I was barely eating and then this last week of stuffing anything and everything in my face like a piggly-wiggly, and I have concocted a fantastic recipe that has brought on a bloated-constipated-gassy-nightmare that is but a slight reminder of when I was at my sickest with CFS and had Irritable Bowel Syndrome.
God that was awful! I was a slow-leaking-squealing-gas tank ready to explode! Luckily I was home alone most of my days on disability, my husband putting in 10 hours a day at work plus another 2 at the gym (I teased him it was the only way to get away from me!), and I was really glad for that. I was constantly bloated, my stomach huge with air, could barely take in a full breath, in pain after I would eat, generally felt awful, could not exercise and the smell, OHMYGOD the smell! Any activity or movement, which was very limited at that time, would cause noxious fumes to come rip-roaring out of me. I truly wondered how the hell I was ever going to be in the company of other people? I was scared to have sex with my husband and would wake myself up in the middle of the night surrounded by a gas-mask, lighting an incense because the smell blanketing my bedroom was making even me sick. I can only imagine why he still shared a bed with me! It was this constant and pervasive non-stop nightmare of disgustingness. Then I was finally diagnosed with yeast levels off the charts by the Fibromyalgia & Fatigue Center and started on Diflucan to address the candida overgrowth. The problem did not get better. I cleaned up my diet for the most part (I am the last person in the world to ever claim perfection). I cut out sugar, processed, refined & fried foods and white bread/pasta/wheat products. I started eating whole grains, lots of veggies, minimal amounts of dairy and food I had to cook for myself. Quinoa with yogurt-cheese, a salad with tuna and homemade balsamic-olive oil-garlic dressing comprised my daily diet (fabulous breath!). I would buy sprouted bread as dense as a rock and munch on it like a cow chew chew chewing hay. I became aware of a silent killer, the typical American diet, and its best-friend, High Fructose Corn Syrup. I learned how to eat properly, watch for it and avoid it like the plague! I ate lots of yogurt and started taking acidophilus pills. After a few months the F & F Center determined my strain of yeast was resistant to Diflucan. I had taken it too many times through the years to combat re-occurring, pervasive yeast infections (pre-cursor symptom?) and it was powerless against the chains of candida braided deep around my system.
I was switched to Ketaconazole and started to get better, something I was quite grateful for! Then I was put on long-term anti-biotics for bacterial infections that were but 1 source of the Chronic Fatigue Syndrome, so here comes another round of Diflucan to keep the yeast at bay. Eventually I was able to get the problem under control and now only have periodic bouts of bloating and gas surrounding Fibromyalgia-flares and bad diet choices. The reality of worrying constantly about what to do in public if I felt that pressure in my stomach mounting; hold it and bring on a horrible bout of bloating and pain that could last for days or risk death from embarrassment, became a distant memory. I moved on to many other levels of healing, grateful to leave this one behind, never to be spoken of again, until now.
But here I sit today...with a mild yet still totally intrusive version of my former problem sneaking up on me, and its bringing back all that disgusting frustration from before. I have started taking Benefiber twice a day, drinking Smooth Move laxative tea every night and am still on those acidophilus pills. Yet it is like the second I don't feel pain or pressure I eat greasy food, no vegetables and sugar, lots and lots of sugar, like I have the right. And then the symptoms start all over again...oh I need some self control! So my promise to myself this week is to exercise prudence! We stocked the fridge with good, wholesome food (if totally labor intensive since everything has to be made) and since I am without a paycheck have no money to eat out. The babies and I started our morning with the usual long walk I had abandoned once summer and strokes hit, and I doused my granola in so much yogurt the creamy far outweighed the crunch. I was loosing weight when I came home from the hospital, the silver lining of a dark foreboding rain cloud, and running around on a steroid high, avoiding food with frenzied activity until that darn headache scare last weekend. Then I medicated the energy away all last week to avoid the manic that caused it in the first place, accepting complacency and self-indulgence as my way of cheering myself up. So this week I will find my balance...no Flexeril during the day (I am getting too used to that drugged up feeling), maybe some Xanax at night (sleep is too important to screw with) but no bad food, giving in to impulses or lazy complacency. School starts next week, I have to find a new job soon and I am going to loose weight during this phase if it is the last thing I do. Damn it!
Thanks for joining,
Leah
God that was awful! I was a slow-leaking-squealing-gas tank ready to explode! Luckily I was home alone most of my days on disability, my husband putting in 10 hours a day at work plus another 2 at the gym (I teased him it was the only way to get away from me!), and I was really glad for that. I was constantly bloated, my stomach huge with air, could barely take in a full breath, in pain after I would eat, generally felt awful, could not exercise and the smell, OHMYGOD the smell! Any activity or movement, which was very limited at that time, would cause noxious fumes to come rip-roaring out of me. I truly wondered how the hell I was ever going to be in the company of other people? I was scared to have sex with my husband and would wake myself up in the middle of the night surrounded by a gas-mask, lighting an incense because the smell blanketing my bedroom was making even me sick. I can only imagine why he still shared a bed with me! It was this constant and pervasive non-stop nightmare of disgustingness. Then I was finally diagnosed with yeast levels off the charts by the Fibromyalgia & Fatigue Center and started on Diflucan to address the candida overgrowth. The problem did not get better. I cleaned up my diet for the most part (I am the last person in the world to ever claim perfection). I cut out sugar, processed, refined & fried foods and white bread/pasta/wheat products. I started eating whole grains, lots of veggies, minimal amounts of dairy and food I had to cook for myself. Quinoa with yogurt-cheese, a salad with tuna and homemade balsamic-olive oil-garlic dressing comprised my daily diet (fabulous breath!). I would buy sprouted bread as dense as a rock and munch on it like a cow chew chew chewing hay. I became aware of a silent killer, the typical American diet, and its best-friend, High Fructose Corn Syrup. I learned how to eat properly, watch for it and avoid it like the plague! I ate lots of yogurt and started taking acidophilus pills. After a few months the F & F Center determined my strain of yeast was resistant to Diflucan. I had taken it too many times through the years to combat re-occurring, pervasive yeast infections (pre-cursor symptom?) and it was powerless against the chains of candida braided deep around my system.
I was switched to Ketaconazole and started to get better, something I was quite grateful for! Then I was put on long-term anti-biotics for bacterial infections that were but 1 source of the Chronic Fatigue Syndrome, so here comes another round of Diflucan to keep the yeast at bay. Eventually I was able to get the problem under control and now only have periodic bouts of bloating and gas surrounding Fibromyalgia-flares and bad diet choices. The reality of worrying constantly about what to do in public if I felt that pressure in my stomach mounting; hold it and bring on a horrible bout of bloating and pain that could last for days or risk death from embarrassment, became a distant memory. I moved on to many other levels of healing, grateful to leave this one behind, never to be spoken of again, until now.
But here I sit today...with a mild yet still totally intrusive version of my former problem sneaking up on me, and its bringing back all that disgusting frustration from before. I have started taking Benefiber twice a day, drinking Smooth Move laxative tea every night and am still on those acidophilus pills. Yet it is like the second I don't feel pain or pressure I eat greasy food, no vegetables and sugar, lots and lots of sugar, like I have the right. And then the symptoms start all over again...oh I need some self control! So my promise to myself this week is to exercise prudence! We stocked the fridge with good, wholesome food (if totally labor intensive since everything has to be made) and since I am without a paycheck have no money to eat out. The babies and I started our morning with the usual long walk I had abandoned once summer and strokes hit, and I doused my granola in so much yogurt the creamy far outweighed the crunch. I was loosing weight when I came home from the hospital, the silver lining of a dark foreboding rain cloud, and running around on a steroid high, avoiding food with frenzied activity until that darn headache scare last weekend. Then I medicated the energy away all last week to avoid the manic that caused it in the first place, accepting complacency and self-indulgence as my way of cheering myself up. So this week I will find my balance...no Flexeril during the day (I am getting too used to that drugged up feeling), maybe some Xanax at night (sleep is too important to screw with) but no bad food, giving in to impulses or lazy complacency. School starts next week, I have to find a new job soon and I am going to loose weight during this phase if it is the last thing I do. Damn it!
Thanks for joining,
Leah
Saturday, August 21, 2010
Manifest Destiny
When I came home from the hospital nearly 3 weeks ago my husband and I had a renewed commitment as to how we were going to live our lives, change our lives. So many medical lightening-bolts have struck me in my mere 34 years and we were determined to not let it happen again! I cannot take full responsibility for all the health problems I have had, but the 1 thing I can do is be AS ABSOLUTELY HEALTHY AS I CAN to minimize anything that comes my way in the future, as well as manage what I have left from the past. So henceforth the Manifest Destiny was born...
Mission Statement: We will achieve a life of holistic excellence, as we define it. We will strive for balance in harmony of Heart, Spirit, Mind, Body & Soul.
Heart:
~Love, to ourselves and others
~Sharing
~Compassion
Spirit:
~Achieving personal dreams
~Expressing the true self both inside and out
~Embracing all life has to offer
Mind:
~Expecting what is reasonable
~Balanced hormones & chemicals
~Education & knowledge
~Acceptance of what is, and what needs to be
~Meeting our responsibilities with confidence
Body:
~Yoga
~Meditation
~Cardio & dog walking
~Weight training
~Sleep
~Healthy diet
Soul:
~Committing to a belief greater than ourselves
~Embracing a close and intimate relationship with God
~Living in faith, not fear
Oh so much easier said than done! It takes focus and discipline to turn away the anger, fear, resentment and unforgiveness knocking on the door of our lives. We are well versed in those, but these new virtues cause a rise above our immediate circumstances and feelings and indulgences with a constant and pervasive reminder that if we want a life of excellence we must work for a life of excellence!
We became de-railed this last week, because of fear. The headache scare Sunday night sent my husband into a tail-spin and me on a medicate-the-steroid-energy-away stupor. But now in retrospect it was just a little bump in the road to get us back on the road. They will come; disruptions, interruptions, distractions and diversions. We will be knocked off that road many many more times to come, but we will get back on. What's the choice? We have already indulged and wallowed in depression and self-pity enough for one lifetime and don't have any more time to lose.
Thanks for joining,
Leah
Mission Statement: We will achieve a life of holistic excellence, as we define it. We will strive for balance in harmony of Heart, Spirit, Mind, Body & Soul.
Heart:
~Love, to ourselves and others
~Sharing
~Compassion
Spirit:
~Achieving personal dreams
~Expressing the true self both inside and out
~Embracing all life has to offer
Mind:
~Expecting what is reasonable
~Balanced hormones & chemicals
~Education & knowledge
~Acceptance of what is, and what needs to be
~Meeting our responsibilities with confidence
Body:
~Yoga
~Meditation
~Cardio & dog walking
~Weight training
~Sleep
~Healthy diet
Soul:
~Committing to a belief greater than ourselves
~Embracing a close and intimate relationship with God
~Living in faith, not fear
Oh so much easier said than done! It takes focus and discipline to turn away the anger, fear, resentment and unforgiveness knocking on the door of our lives. We are well versed in those, but these new virtues cause a rise above our immediate circumstances and feelings and indulgences with a constant and pervasive reminder that if we want a life of excellence we must work for a life of excellence!
We became de-railed this last week, because of fear. The headache scare Sunday night sent my husband into a tail-spin and me on a medicate-the-steroid-energy-away stupor. But now in retrospect it was just a little bump in the road to get us back on the road. They will come; disruptions, interruptions, distractions and diversions. We will be knocked off that road many many more times to come, but we will get back on. What's the choice? We have already indulged and wallowed in depression and self-pity enough for one lifetime and don't have any more time to lose.
Thanks for joining,
Leah
Friday, August 20, 2010
Background: Pancreatitis Round 4
I returned to work in April of '07 after 7 long months on disability, learning how to live again. I was scared and nervous and worried but swallowed my fear and just did it. Getting off that train the first day, buttoned up in my uniform, fluffed and primped to go sell makeup to the masses, I was awestruck. San Francisco is an amazing city with so many sights, smells, sounds, masses of strange and interesting and annoying people, so much frantic and frenzied activity taking place all at the same time. I de-trained at the Powell Street station and as I ascended the escalator a drunk homeless man came toppling down head-first on the other side...it was a harsh re-introduction to the city I loved and knew so well. I was so sensitive! During my self-absorbed suburban health re-build I had lost my edge.
It was familiar to be back at work, if completely overwhelming. I had been missed and many came up to me to ask me why the hell I had come back. I explained with a serene expression that I was grateful to even be back, I was so sick I did not think it would ever happen. It represented how hard I had worked and far I had come, and I was proud. By the end of the 1st week I was in so much pain I had to fill that Percocet prescription and rely on it to get through each day. My schedule was manageable, never working more than 2 days in a row, and my days off consisted of lying around whining, legs throbbing and aching to the point that I actually believed to not have them would have been better. I was unable to do much more than bitch bitch bitch and still can't believe my husband stuck with me through that period. I was still on the Fibromyalgia & Fatigue Center protocol but they had now added a vast round of intense anti-virals, anti-biotics and anti-fungals to the mix, finally having sourced the root cause of this illness. Oh it all hurt so much! As the medications battled the infections, I was victim to every ping and pang, magnified by 20 because of the Fibromyalgia. But I knew my body was fighting and was going to win and just wanted a normal life again. So in my true-to-self fashion...I pushed pushed pushed myself right back into the hospital!
One crisp day in June, a particularly horrible pain day, while I was grooming the dog, I realized I was having a pancreas attack. The pain had become UNBEARABLE the previous few days. Usually I could not get out of bed without Percocet (which turned into Tramadol when my doctor found out and freaked that I was taking it on an empty stomach) and I could barely make it out of bed to the bathroom to pee in the morning. Just walking I felt like I was crushing myself! Those few fleeting moments when I would first wake-up, before my brain had chance to register the pain radiating from its own control center, were the only pain-free moments of my life. I had about 45 seconds to lie there and try not to remember the horrible quandary I existed in. But then the fire, electricity and throbbing burning would begin, as would the struggle that now encompassed my daily life. So as I snipped and glided the clippers over the Yorkies tiny body the mounting stomach pain, standing out in rapt attention from all the rest of the pain, caused me to take notice. I called my neighbor and dear friend and asked in a calm and rational voice if she could drive me to the hospital because I was having a pancreas attack. I felt like a woman giving birth to her 4th child. Totally calm, knowing what to expect, in control. She took me to urgent care, I explained what was going on, moaned, cried and clutched my stomach in the waiting room and waited for admission, for the Dilaudid drip to dull the stabbing and ripping engorging my abdomen.
I was quickly admitted into the hospital and this was by far the worst in-patient care experience of my entire life. My doctor, whom I had a huge language and communication barrier with, blamed the Valcyte & Percocet, coupled with the fact that I had not been on triglyceride meds for a few years now. I COULD NOT GET OUT OF PAIN!!! Pancreatitis is 1 thing, pancreatitis with Fibromyalgia a whole other ball-game. The hospital was dirty, the nurses treated me like a junkie and I began sweating profusely in a sticky fashion after I was started on Cymbalta. I told very few people I was in the hospital, had no visitors, and was completely embarrassed and ashamed to be there. I just wanted it to be over with! I had been through this enough to know the routine and that alone made me cry. I was reading a book called Beachglass that I had randomly picked up at the library. It was a tale of a wayward youth, caught up in the tangle of drug & alcohol abuse, dirty dependency and emotional servitude. She cleaned up her life and grew up and out of the pain. But her roots mirrored mine so eloquently, hitting so close to home it poignantly brought back a flood of emotions and behaviors that had been long buried and not-quite-forgotten. It forced me to reconcile that I had simply displaced all that darkness from my youth with a sun-shiny and happy marriage, never actually dealing with the motivations, actions or consequences of my youthful rage-fueled choices.
It was during this hospital stay God and I had a very intense, deep and important conversation. They spoke to me and made it abundantly clear that if I kept on with the lifestyle of stress, pressure and madness I had established my life around I was not going to make it to my 35th birthday. I sobbed and cried, knowing something had to give, somehow I had to stop this never-ending cycle of destruction and hell my earthly life had become. As the tears rolled and sobs swelled I allowed to pour out of me all the control, anger, rage, frustration, devastation, loss, mourning, loneliness, sorrow and hatred that had entangled itself around my soul. I emptied myself out and went home, sticky and sweating, drug-dazed and hollow. But at least I had excavated, and now it was really time to re-build.
Thanks for joining,
Leah
It was familiar to be back at work, if completely overwhelming. I had been missed and many came up to me to ask me why the hell I had come back. I explained with a serene expression that I was grateful to even be back, I was so sick I did not think it would ever happen. It represented how hard I had worked and far I had come, and I was proud. By the end of the 1st week I was in so much pain I had to fill that Percocet prescription and rely on it to get through each day. My schedule was manageable, never working more than 2 days in a row, and my days off consisted of lying around whining, legs throbbing and aching to the point that I actually believed to not have them would have been better. I was unable to do much more than bitch bitch bitch and still can't believe my husband stuck with me through that period. I was still on the Fibromyalgia & Fatigue Center protocol but they had now added a vast round of intense anti-virals, anti-biotics and anti-fungals to the mix, finally having sourced the root cause of this illness. Oh it all hurt so much! As the medications battled the infections, I was victim to every ping and pang, magnified by 20 because of the Fibromyalgia. But I knew my body was fighting and was going to win and just wanted a normal life again. So in my true-to-self fashion...I pushed pushed pushed myself right back into the hospital!
One crisp day in June, a particularly horrible pain day, while I was grooming the dog, I realized I was having a pancreas attack. The pain had become UNBEARABLE the previous few days. Usually I could not get out of bed without Percocet (which turned into Tramadol when my doctor found out and freaked that I was taking it on an empty stomach) and I could barely make it out of bed to the bathroom to pee in the morning. Just walking I felt like I was crushing myself! Those few fleeting moments when I would first wake-up, before my brain had chance to register the pain radiating from its own control center, were the only pain-free moments of my life. I had about 45 seconds to lie there and try not to remember the horrible quandary I existed in. But then the fire, electricity and throbbing burning would begin, as would the struggle that now encompassed my daily life. So as I snipped and glided the clippers over the Yorkies tiny body the mounting stomach pain, standing out in rapt attention from all the rest of the pain, caused me to take notice. I called my neighbor and dear friend and asked in a calm and rational voice if she could drive me to the hospital because I was having a pancreas attack. I felt like a woman giving birth to her 4th child. Totally calm, knowing what to expect, in control. She took me to urgent care, I explained what was going on, moaned, cried and clutched my stomach in the waiting room and waited for admission, for the Dilaudid drip to dull the stabbing and ripping engorging my abdomen.
I was quickly admitted into the hospital and this was by far the worst in-patient care experience of my entire life. My doctor, whom I had a huge language and communication barrier with, blamed the Valcyte & Percocet, coupled with the fact that I had not been on triglyceride meds for a few years now. I COULD NOT GET OUT OF PAIN!!! Pancreatitis is 1 thing, pancreatitis with Fibromyalgia a whole other ball-game. The hospital was dirty, the nurses treated me like a junkie and I began sweating profusely in a sticky fashion after I was started on Cymbalta. I told very few people I was in the hospital, had no visitors, and was completely embarrassed and ashamed to be there. I just wanted it to be over with! I had been through this enough to know the routine and that alone made me cry. I was reading a book called Beachglass that I had randomly picked up at the library. It was a tale of a wayward youth, caught up in the tangle of drug & alcohol abuse, dirty dependency and emotional servitude. She cleaned up her life and grew up and out of the pain. But her roots mirrored mine so eloquently, hitting so close to home it poignantly brought back a flood of emotions and behaviors that had been long buried and not-quite-forgotten. It forced me to reconcile that I had simply displaced all that darkness from my youth with a sun-shiny and happy marriage, never actually dealing with the motivations, actions or consequences of my youthful rage-fueled choices.
It was during this hospital stay God and I had a very intense, deep and important conversation. They spoke to me and made it abundantly clear that if I kept on with the lifestyle of stress, pressure and madness I had established my life around I was not going to make it to my 35th birthday. I sobbed and cried, knowing something had to give, somehow I had to stop this never-ending cycle of destruction and hell my earthly life had become. As the tears rolled and sobs swelled I allowed to pour out of me all the control, anger, rage, frustration, devastation, loss, mourning, loneliness, sorrow and hatred that had entangled itself around my soul. I emptied myself out and went home, sticky and sweating, drug-dazed and hollow. But at least I had excavated, and now it was really time to re-build.
Thanks for joining,
Leah
Thursday, August 19, 2010
Spittin' Nails
Oh I am in a particularly cantankerous mood today! On top of everything else I am mid-cycle and that always makes me grouchy. I feel melancholy and negative and under-goaled and unproductive and directionless and generally unsure of the who, what, when, where and why's of life. This entire week has been a terrible backslide and last night it hit me hard, and boy did I get mad! Having nearly escaped death 3 weeks ago is so very strange. Stranger still is that with the exception of playing puppet to a plethora of prescription meds (and the merry-go-round of side-effects) and taking time off work, everything seems to have returned to normal. Dysfunctional as normal. My husband and I were renewed upon my discharge from the hospital to change our lives, priorities, focus. We knew the quality and speed we were barreling down the highway of life at was self-destructive, having crashed us into so many walls of devastation already. He used up the last of his vacation for the year to take care of me that first week home. We really deconstructed our lives as we attempted to wind-down and digest the events surrounding my strokes. We assessed our key behavioral issues that are standing in the way of the health & happiness we want, no screw that, NEED at this time in our lives. He is still so shell-shocked and bewildered by the sheer horror of nearly having lost me. I am encouraging him to talk about it and then to give that burden away, it is too much for him to carry. He says that sounds too religious.
That first week he went back to work we blazed determination to change, and we did really good. We were going to bed on time and I was cooking dinner each night so that when he came home from the gym we could eat immediately and try to enjoy the illusion of a few hours together before early lights-out. We have been going to church on Sundays, not over-eating, I am walking the dogs every morning and have been productive with both the household and my personal pursuits (blogging, can't you tell?). So I sat there all proud of myself at a local burger joint Sunday evening, listing down how much we have really improved when he complained we were just back to the same-old same-old. Putting it out on paper was a fabulous reminder that we were indeed making progress. So in my Prednisone-high manic overdrive I flipped the page over and constructed the list for this week that needs to be built on top of the accomplishments from last week, pretty much making us those perfectly organized, on the ball, super-hero people that we simply are not. Then came the stroke-scare headache later that night that de-railed the whole plan and this week has been a disaster!
We have been up late, my husband back to his 4-5 hours of sleep a night, I have had to medicate to calm down and avoid those stroke-inducing headaches and am now wanting to lay around and eat...BAD NEWS. I have not cooked dinner once nor has he been to the gym. After gorging on Chinese take-out, and entirely too much of it, I hit the roof when I saw him climbing into bed at 11pm last night. Right back where we started, right back on track to put us in the oh so familiar zone of 1 impending health or financial or emotional crisis after another. Right back to the habits of un-success that we know so well. It is so hard to implement true and lasting change. Whoever said it takes 21 days to form a habit must be on drugs or an alien, I say 8 months is a good indicator that it might stick. So there I was, Chinese food impacted from the top of my pelvis to the bottom of my bosoms, making me bloated and thirsty with it's high sodium content, the realization of all the aforementioned hitting me, and I FREAKED! I started ranting and raving and carrying on about how mad I was, how arrogant I was! I grabbed the list from Sunday night and screamed at him while shaking it in my fist that I was screaming at myself HOW DARE I? How dare I think I can just pile perfection on us and life would just be OKAY? The neuropathways of self-destructive behavior run so deep and well-luged in both of us, it is going to take years to form new ones that can even begin to compete.
He settled me down a little, and we agreed that the list of had done was all we were going to focus on until the end of the year. Real progress built on real and lasting change. Not some perfection based, exhaustive criteria destined to fail with its sheer volume. So as I sit here moody, not wanting to answer the phone when it rings, dreaming of devouring the rest of that Mongolian Beef even though I am not really hungry, I think I am going to do us both a favor and restore calm, focus and balance to the household. I am going to print our our Mission Statement on pretty paper and make a collage of our aspirations and goals and get caught up on General Hospital. After all, Brenda is back...
Thanks for joining,
Leah
That first week he went back to work we blazed determination to change, and we did really good. We were going to bed on time and I was cooking dinner each night so that when he came home from the gym we could eat immediately and try to enjoy the illusion of a few hours together before early lights-out. We have been going to church on Sundays, not over-eating, I am walking the dogs every morning and have been productive with both the household and my personal pursuits (blogging, can't you tell?). So I sat there all proud of myself at a local burger joint Sunday evening, listing down how much we have really improved when he complained we were just back to the same-old same-old. Putting it out on paper was a fabulous reminder that we were indeed making progress. So in my Prednisone-high manic overdrive I flipped the page over and constructed the list for this week that needs to be built on top of the accomplishments from last week, pretty much making us those perfectly organized, on the ball, super-hero people that we simply are not. Then came the stroke-scare headache later that night that de-railed the whole plan and this week has been a disaster!
We have been up late, my husband back to his 4-5 hours of sleep a night, I have had to medicate to calm down and avoid those stroke-inducing headaches and am now wanting to lay around and eat...BAD NEWS. I have not cooked dinner once nor has he been to the gym. After gorging on Chinese take-out, and entirely too much of it, I hit the roof when I saw him climbing into bed at 11pm last night. Right back where we started, right back on track to put us in the oh so familiar zone of 1 impending health or financial or emotional crisis after another. Right back to the habits of un-success that we know so well. It is so hard to implement true and lasting change. Whoever said it takes 21 days to form a habit must be on drugs or an alien, I say 8 months is a good indicator that it might stick. So there I was, Chinese food impacted from the top of my pelvis to the bottom of my bosoms, making me bloated and thirsty with it's high sodium content, the realization of all the aforementioned hitting me, and I FREAKED! I started ranting and raving and carrying on about how mad I was, how arrogant I was! I grabbed the list from Sunday night and screamed at him while shaking it in my fist that I was screaming at myself HOW DARE I? How dare I think I can just pile perfection on us and life would just be OKAY? The neuropathways of self-destructive behavior run so deep and well-luged in both of us, it is going to take years to form new ones that can even begin to compete.
He settled me down a little, and we agreed that the list of had done was all we were going to focus on until the end of the year. Real progress built on real and lasting change. Not some perfection based, exhaustive criteria destined to fail with its sheer volume. So as I sit here moody, not wanting to answer the phone when it rings, dreaming of devouring the rest of that Mongolian Beef even though I am not really hungry, I think I am going to do us both a favor and restore calm, focus and balance to the household. I am going to print our our Mission Statement on pretty paper and make a collage of our aspirations and goals and get caught up on General Hospital. After all, Brenda is back...
Thanks for joining,
Leah
Wednesday, August 18, 2010
Back To Life...Back To Reality...
Last night I had a vivid dream that I was filing the freckles and sun-spots off of my body with a finger-nail file. This reminds me that I need to see the Dermatologist for my annual once-over for skin cancer (Arizona can do that to you!), need to make my annual Gyno appointment and basically get back to tending to my life that has been ignored as I have stroked, Prednisone-freaked and blog-obsessed these last few weeks. I am taking Flexeril to keep myself calm and from going into a steroid-frenzy every day, exhausting my body with activity spurred by energy I do not own. It is making me groggy and foggy. Manic and inducing headaches or groggy and foggy, why are those my only choices? I have opened up a whole new world since going "live" with my blog only 7 days ago. The response has been overwhelming, and as I connect with so many beautiful souls each absorbed in their own layer of process with this illness I am touched, honored, reminded and renewed to keep going...keep on keepin' on.
I have set goals that I am not able to keep, and although I am sorely disappointed, I am trying to be compassionate toward myself. Not only is there no immediate masters program in my future, given the strokes I do not feel comfortable taking 2 classes so I have dropped down to an easy conversational class solo. I could not make it to puppy training class last night, layering yet another burden of responsibility on my overworked-overwhelmed-stressed-out husband. I need to pay the bills and get my thank you notes out and do laundry and get back to cooking dinner at night and stretching every day and going to bed early and managing our household and still somehow find a way to rest and renew. And I really need a paying job! I need bla...bla...bla...whoa is me.
I saw my psychiatrist yesterday and he is taking me off the SSRI's, given their possible link to RCVS's unknown etiology. He chopped the Welbutrin dose in half due to the seizure concern and thinks the Prednisone will keep me from going back into major depression, but if I do we will deal with it at that time. I told him I only want to take "old" drugs, with years worth of documented side-effects. I simply do not trust the new ones. Being an educated yet paranoid conspiracy-theorist by nature I feel the FDA is in the pocket of the lobbyist, as is everything and everyone else in this country, and don't trust. I simply don't trust.
So this is my ridiculous list of meds I am now on to treat the multitude of problems my healthy-looking body is hosting:
1. Tricor
2. Neurontin
3. Prednisone
4. Verapamil
5. Xanax
6. Flexeril
7. Tramadol
8. Valtrex
9. Percocet
10. Welbutrin
11. Lexapro
Half of these are to combat the side-effects of the few necessary ones I am on! Absurd!
Supplements:
~Multi-Vitamin & Mineral
~Calcium, Magnesium & Vitamin D
~Acidophilous
~L-Lysine
I am not allowed to take my customized cocktail of supplements due to unknown interactions with the steroids. I am actually only supposed to be on the Calcium, Magnesium & Vitamin D and Acidophilous per my doctor but keep having these horrible viral flare-ups so am taking L-Lysine and need the nutritional support from the Multi-Vitamin & Mineral due to my somewhat mystifying immune systems need for a prop-up. Just reviewing all this, taking a moment to ponder the snapshot that is my life, I am overwhelmed with what is actually happening to me and understand the need for rest and relaxation. I will survive this, yet again another psychotic round of prescription drugs and scary medical conditions, and will get to the other side. But as my brain sits in a fog and my leg and foot will not stop bouncing a mile a second, my hands shaking uncontrollably as I type, I understand the juxtaposition I am and think I am going to take a nap.
Thanks for joining,
Leah
I have set goals that I am not able to keep, and although I am sorely disappointed, I am trying to be compassionate toward myself. Not only is there no immediate masters program in my future, given the strokes I do not feel comfortable taking 2 classes so I have dropped down to an easy conversational class solo. I could not make it to puppy training class last night, layering yet another burden of responsibility on my overworked-overwhelmed-stressed-out husband. I need to pay the bills and get my thank you notes out and do laundry and get back to cooking dinner at night and stretching every day and going to bed early and managing our household and still somehow find a way to rest and renew. And I really need a paying job! I need bla...bla...bla...whoa is me.
I saw my psychiatrist yesterday and he is taking me off the SSRI's, given their possible link to RCVS's unknown etiology. He chopped the Welbutrin dose in half due to the seizure concern and thinks the Prednisone will keep me from going back into major depression, but if I do we will deal with it at that time. I told him I only want to take "old" drugs, with years worth of documented side-effects. I simply do not trust the new ones. Being an educated yet paranoid conspiracy-theorist by nature I feel the FDA is in the pocket of the lobbyist, as is everything and everyone else in this country, and don't trust. I simply don't trust.
So this is my ridiculous list of meds I am now on to treat the multitude of problems my healthy-looking body is hosting:
1. Tricor
2. Neurontin
3. Prednisone
4. Verapamil
5. Xanax
6. Flexeril
7. Tramadol
8. Valtrex
9. Percocet
10. Welbutrin
11. Lexapro
Half of these are to combat the side-effects of the few necessary ones I am on! Absurd!
Supplements:
~Multi-Vitamin & Mineral
~Calcium, Magnesium & Vitamin D
~Acidophilous
~L-Lysine
I am not allowed to take my customized cocktail of supplements due to unknown interactions with the steroids. I am actually only supposed to be on the Calcium, Magnesium & Vitamin D and Acidophilous per my doctor but keep having these horrible viral flare-ups so am taking L-Lysine and need the nutritional support from the Multi-Vitamin & Mineral due to my somewhat mystifying immune systems need for a prop-up. Just reviewing all this, taking a moment to ponder the snapshot that is my life, I am overwhelmed with what is actually happening to me and understand the need for rest and relaxation. I will survive this, yet again another psychotic round of prescription drugs and scary medical conditions, and will get to the other side. But as my brain sits in a fog and my leg and foot will not stop bouncing a mile a second, my hands shaking uncontrollably as I type, I understand the juxtaposition I am and think I am going to take a nap.
Thanks for joining,
Leah
Tuesday, August 17, 2010
Do You Know Why The Caged Bird Sings?
A free bird leaps on the back of the wind
and floats downstream till the current ends
and dips his wing in the orange suns rays and dares to claim the sky.
But a bird that stalks down his narrow cage
can seldom see through his bars of rage
his wings are clipped and his feet are tied so he opens his throat to sing.
The caged bird sings with a fearful trill
of things unknown but longed for still
and his tune is heard on the distant hill
for the caged bird sings of freedom.
The free bird thinks of another breeze
and the trade winds soft through the sighing trees
and the fat worms waiting on a dawn-bright lawn and he names the sky his own.
But a caged bird stands on the grave of dreams
his shadow shouts on a nightmare scream
his wings are clipped and his feet are tied so he opens his throat to sing.
The caged bird sings with a fearful trill
of things unknown but longed for still
and his tune is heard on the distant hill
for the caged bird sings of freedom.
~Maya Angelou
Oh Maya, my inspiration, my hero...you flow so poetically with the poignant truths of life. You are an inspiration, your frank honesty and raw descantments of an experience imprisoned by time and place, you have broken free of the chains that tried to keep your brilliance down and lead a life of truth, dignity and pride. Thank you for your courage, thank you for your voice.
So many of us Fibromyalgia sufferers, chronic pain sufferers, unexplained illness sufferers sit in silent misery, unable to communicate to the most brilliant doctors or closest loved ones how horribly awful it is to be locked inside a body racked with pain and sickness. We are usually blessedly cursed by not looking sick. No, we may not look as good as we once did, but most are not wheel-chair-bound, wasting away to 90-something pounds, hair falling out, skin peeling off, you get my drift. So we do not get the immediate and compassionate sympathy of others. In fact, more often than not, it is the complete opposite. "What do you mean you can't make it to Father's Day, 4th of July, Christmas Eve? Why can't you go to work today? Why is the house such a mess? Why don't you cook dinner anymore?" Oh most of us have heard it all. The guilt associated with having to protect and take care of ourselves makes it all the more devastating, as doctor after doctor tell us we are fine and healthy and just need an attitude adjustment, therapist or anti-depressant. It is a battle fought against yourself for yourself, and that is just so damn hard to take!
But let's step back from the immediacy of our own reality and recognize that "imprisonment" has been going on for thousands of years. And people have been fighting it and winning the entire time. Slavery, oppression, captivity, servitude, thralldom. We get peaks into the survivors, the Life Is Beautiful moments in time where an exceptional person will not let their circumstances get them down. It is possible. Really freakin' hard, but possible! When I was at my sickest the sheer horror of my quality of life flushing down the toilet in front of me made me work all the more, pushing myself hard to deny it, and that eventually made me even sicker. If I had taken myself seriously, if I had already been failed by modern medicines limited knowledge, if I had more self-respect or self-esteem or something, and had declared myself ill and taken charge, I believe the virus that gave me CFS would not have infected my central nervous system and left me with permanent nerve damage, ie. Fibromyalgia. But I did not. I pushed myself hard and let it fester. I felt like I was letting my husband, my family, my work, my friends, myself down. So the virus sat blooming in the control center of my body for over a year and a half and left its permanent mark. Okay, so what do I do now...
I embraced the best of everything to get better. There was no pill, surgery, treatment, protocol, test or hardly a doctor to diagnosis it. I had to go outside the confines of modern medicine to get better. If you go to the grocery store and just buy vegetables or just buy meat or just buy bread & pasta you are going to have a very poor diet and get sick, not getting the variety of ingredients infused into your body that it needs for health. Think of Fibromyalgia like that. It is an under-studied, somewhat new, non-life threatening disease that modern medicine only started paying attention to when Pfizer pushed Lyrica through FDA approval and launched a heavy ad campaign to recoup their cash. Don't get me wrong, the commercials help awareness, and I myself did benefit from Lyrica for a time (but the side-effects are just not worth it to me), so it holds its place in the process of my recovery. But there is so much more out there. I am constantly asked how I got "better" (managed).
This is how...
1) Sheer determination that I would
2) Searching endlessly for that 1st doctor that believed me
3) The Fibromyalgia & Fatigue Center- embracing modern & holistic medicine
4) Tons of nutritional supplements
5) Time off work to process & heal
6) An excessive amount of prescription drugs
7) Forgiveness of myself and others for the "harm" that was unwittingly inflicted on me during my lifetime
8) The most brilliant acupuncturist in the world
9) The best husband any woman could ever ask for, and a caring & supportive network of family & friends
10) Balancing the 5 star points of life: Diet, Exercise, Hormones, Stress & Sleep
11) Therapy, therapy and more therapy
12) Yoga
13) Moving to a warm weather climate
14) Credit cards to pay for it all :(
15) Believing in God, that I am not alone in this madness
16) Accepting that this is my journey
So as you can see there is no 1 answer. It is complicated. It took determination, strength and perseverance I did not know I possessed. When I was stripped bare and at the darkest bottom of my low I realized that control in life is but an illusion, but the 1 THING THAT CANNOT BE TAKEN FROM ME IS HOW I REACT TO IT! All I can say is life is worth living, and as long as I am living it will be under my terms, no one or anything else's. So I now have learned why the caged bird sings...because it can.
Thanks for joining,
Leah
Monday, August 16, 2010
Is This A Headache Or A Stroke?
Oh last night I gave myself a wallop of a fright! I was just released from 6 days in the hospital on August 2nd due to 2 strokes caused by a rare & mysterious brain blood-vessel freak out (enough with the rare & mysterious already!). Luckily this condition was quickly diagnosed in 2 days and there is successful treatment if caught early, steroids & calcium-channel blockers. Off work for a month, I have been home trying to digest this new status of "Stroke Survivor" and figure out yet again how to proceed with my life. I have also been flying high on Prednisone and alternately enjoying and spazzing out on its many side-effects. The energy is unprecedented, and the Fibromyalgia pain is gone (glory, glory, hallelujah!)! I have not felt this alive or capable in years. I have no inflammation in my body and can snap, crackle & pop my limber bones and joints into place with easy twists and turns. I am loosing weight and have lost the "puffiness" in my face starting and stopping Lyrica induced over the last few years. This forced type-B is resuming her overdrive-A ways as I am on a major productivity high, setting out to "fix" all the broken pieces of my life that keep coming in the form of life-threatening illness.
But I am like a speed-freak, racing around at top speed, talking a mile a minute, hands shaking and fits of 'roid rage coming in waves. I can feel the pressure mounting in my brain and usually by mid-afternoon have a mild headache that warrants a Tramadol to soothe this aching reminder that I spent my 34th birthday in the ICU, just seconds, minutes, days away from death. Every evening just to sit down and watch TV and eventually fall asleep I am popping Xanax to bring down the steroid high, once again relying on massive amounts of prescription drugs to survive and playing puppet to their many repercussions. So yesterday when my husband, fur-babies and I spent the afternoon sheltered in the Starbucks outdoor mist-and-shade respite of the 108 degree Arizona heat, I thought nothing of it. Nor of the tightly bound ponytail that got me out the door to church on time earlier in the morning, pulling taught on my scalp all day. The mid-afternoon headache kicks in, with Tramadol offering no avail. It keeps mounting into dinner and by 7PM I am beginning to become quite concerned. Another Tramadol and some Xanax, and an hour later it is still there, slowly building into what my paranoia imagines is another climax of a stroke.
Thus begins the panic, fear, inquiry and concern into the type of headache (nowhere near the "thunderclap" that precipitated my strokes) the meds are doing nothing to soothe the throb of. I pulse with down-right terror as I vividly recall what I have just been through, needing to do anything and everything from allowing that nightmare to repeat itself. My poor husband immediately tail-spins into a bumbling mess, the acute fear of my death and his subsequent solitude that consumed him during my hospital stay flooding back to reality. Do I go to the ER? Is this related to the slight decrease in Prednisone my treatment plan mandated on Friday? Am I over-reacting, having just over-done it with the heat and scalp pressure and frenzied, steroid-induced excitement? I settle on the responsible yet not overwhelmingly expensive or dramatic option of paging the on-call neurologist to obtain advice. She instructs me to take the missing dosage of Prednisone (what's keeping the blood vessels in my brain open from stroking again) and I relent to taking a Percocet that dulls the pain to a slow and easy thud. But I can't sleep, and as I lie next to my terrified half-awake husband I feel so guilty, so scared and so paranoid. I want so badly to live, have fought through Fibromyalgia hell to reach a balance of life worth living and simply cannot be taken down by 1 single more thing!
So for today, at least right now, this girl is resting with an ice-pack strapped to my head, heeding my neurologists advice to increase the calcium-channel blockers, not the steroids (thank God). I am under constant supervision of my family & friends and promising myself to slow down, let my body heal and stop racing back to normal activity the steroids have given me a false sense of owning.
Thanks for joining,
Leah
But I am like a speed-freak, racing around at top speed, talking a mile a minute, hands shaking and fits of 'roid rage coming in waves. I can feel the pressure mounting in my brain and usually by mid-afternoon have a mild headache that warrants a Tramadol to soothe this aching reminder that I spent my 34th birthday in the ICU, just seconds, minutes, days away from death. Every evening just to sit down and watch TV and eventually fall asleep I am popping Xanax to bring down the steroid high, once again relying on massive amounts of prescription drugs to survive and playing puppet to their many repercussions. So yesterday when my husband, fur-babies and I spent the afternoon sheltered in the Starbucks outdoor mist-and-shade respite of the 108 degree Arizona heat, I thought nothing of it. Nor of the tightly bound ponytail that got me out the door to church on time earlier in the morning, pulling taught on my scalp all day. The mid-afternoon headache kicks in, with Tramadol offering no avail. It keeps mounting into dinner and by 7PM I am beginning to become quite concerned. Another Tramadol and some Xanax, and an hour later it is still there, slowly building into what my paranoia imagines is another climax of a stroke.
Thus begins the panic, fear, inquiry and concern into the type of headache (nowhere near the "thunderclap" that precipitated my strokes) the meds are doing nothing to soothe the throb of. I pulse with down-right terror as I vividly recall what I have just been through, needing to do anything and everything from allowing that nightmare to repeat itself. My poor husband immediately tail-spins into a bumbling mess, the acute fear of my death and his subsequent solitude that consumed him during my hospital stay flooding back to reality. Do I go to the ER? Is this related to the slight decrease in Prednisone my treatment plan mandated on Friday? Am I over-reacting, having just over-done it with the heat and scalp pressure and frenzied, steroid-induced excitement? I settle on the responsible yet not overwhelmingly expensive or dramatic option of paging the on-call neurologist to obtain advice. She instructs me to take the missing dosage of Prednisone (what's keeping the blood vessels in my brain open from stroking again) and I relent to taking a Percocet that dulls the pain to a slow and easy thud. But I can't sleep, and as I lie next to my terrified half-awake husband I feel so guilty, so scared and so paranoid. I want so badly to live, have fought through Fibromyalgia hell to reach a balance of life worth living and simply cannot be taken down by 1 single more thing!
So for today, at least right now, this girl is resting with an ice-pack strapped to my head, heeding my neurologists advice to increase the calcium-channel blockers, not the steroids (thank God). I am under constant supervision of my family & friends and promising myself to slow down, let my body heal and stop racing back to normal activity the steroids have given me a false sense of owning.
Thanks for joining,
Leah
Sunday, August 15, 2010
"But You Don't Look Sick"
Oh if I had a buck for every time I have heard those words since 2005 I would have no problems paying my medical bills now! One of the best things about this disease is you can keep your looks...and one of the worst. When I first became sick with "mystery illness" I was looking better than I ever had in my entire life! Glowing and radiant, I had just survived a severe bout with pancreatitis and had dropped a ton of weight, fitting into a size 8 for the first time since my wedding. My hair was long and blonde, sporting $200 highlights, and I was at a point in my professional makeup artist career where I really knew what I was doing and could coax the most out of my looks. I had stopped drinking alcohol entirely and was eating whole, unprocessed, unrefined foods and the clean lifestyle really showed on the outside. So when all of a sudden I started complaining about the intense burning and searing feeling of my bones separating from my muscles in my legs and my abdomen on its way to explosion or implosion, coupled with debilitating fatigue, the response I received was skeptical at best. I did have a wee bit of credibility due to pancreatitis being a "real" medical condition, but that quickly went away as no problems ever proved themselves. I saw Dr. after Dr. and was given a clean bill of health and anti-depressants (aren't we all?). But I had been depressed before and knew this was something else entirely. I would research a new doctor, gathering up my faith and hope and symptom lists and medical records, and come home sobbing because short of something new showing up in the same round of standard blood tests, I was as fit as a fiddle!
The first doctor to believe me was a resident in clinic at UCSF who's mother had Fibromyalgia, and although he was not willing to give me that label immediately, began the long and exhaustive process of testing to obtain that diagnosis of exclusion. I kept up with him until we left San Francisco and will forever be grateful for his sympathetic ear and inquisitive mind. The process went on for about a year, culminating with the last test, a MRI to rule out MS. Multiple Sclerosis scared the shit out of me, for I knew it could indeed be life threatening, but when the imaging came back negative I fell apart. WHAT THE HELL WAS WRONG WITH ME??? Was I forever locked in a pseudo-livable world of sickness and misery entirely of my own fabrication? How could I get better if no one could tell me what was wrong? My faith in modern medicine crumbled, as did my faith in myself, a future, and every naysayer telling me to "get over it" or "it is all in my head" or "this is what lazy people do to avoid having to work". My doctor eventually ruled Chronic Fatigue Syndrome as the culprit, but had no treatment, cure, management, nothing!
My husband and I planned a long and relaxing camping trip to celebrate my birthday and our 5th anniversary. Money for anything more had already been spent on medical bills. It was during this week that full-blown Fibromyalgia knocked me on my ass. I ached and throbbed everywhere and COULD NOT SLEEP. I spent 6 days at our beautiful lake-front campsite in a daze of exhaustion, floating on the surface of the glimmering water, internally burning in the radiant sun, roasting marshmallows around a cozy fire utterly confused. My husband was so supportive but had no idea what to do. We returned from our hiatus and about a month later I totally broke down and thus began my 7 months on disability. Oh this is when it really got good...
Battling with my doctors to extend my disability when I could leave my house for maybe 20 minutes at a time was hell. Getting my family to understand was darn near impossible. My friends dropped off, having nothing in common with a sick and whinny former life-of-the-party. My largest challenge was with my parents. They love me so, I know, but neither of them had ever been through chronic illness and each suggestion they threw at me was met with a hyper-sensitive and often hysterical reaction. They just did not understand, did not get it. They came to visit right after Christmas and I catered dinner in. Cooking? Ha ha ha. But just setting the table and opening a bottle of wine sent me over the edge, and no one was grasping how bad this really was.
I finally reached a point where I had to take a break. Remove myself from the endless suggestions and doubt. I sent email to everyone I knew, informing them I was "on retreat" and would be back in communication in 2 weeks. That was quite possibly the best thing I could have ever done. I sat in my apartment and pondered. I wrote, I thought, I spent so much time alone and was really able to get inside my own head and make some progress. I was able to put my parents in proper perspective and see it was truly their love and concern driving their grasping attempts at offensive advice, but their human inexperience saying the wrong things. I believe during this time I finally "grew-up". I stopped looking for mommy and daddy to wave their magic wand and fix everything. I stopped expecting the approval and belief of anyone other than a few handful that had supported me unconditionally along the way. I was able to tap into a life-long deep-need for approval and throw it away! It was during this time I became determined to get better, as well. So when I came off "retreat" I was clearer and more determined than ever to surround myself with positivity and improvement. I stopped listening to those that teased me about just not wanting to work or condemned me for "being ill" when nothing was wrong. I stopped caring if I was doubted and did not absorb or retain criticism. I set out to find answers and find health!
It can be done, my friends. 1 step forward and often 3 steps back, but keep on keepin' on! Exploit your "healthy" look and use it to your best advantage. Fluff and primp and press yourself into the appearance of a calm, rational, believable, level-headed confusedly sick person. Project an attitude of hope and grace and perseverance. Many will still look at you and doubt, but that is their problem, not yours! Low expectations of others leads to no disappointment...and one day when you have some semblance of your life back, and you have some control over your body again, the sweetest revenge is simply not caring enough to say anything at all.
Thanks for joining,
Leah
The first doctor to believe me was a resident in clinic at UCSF who's mother had Fibromyalgia, and although he was not willing to give me that label immediately, began the long and exhaustive process of testing to obtain that diagnosis of exclusion. I kept up with him until we left San Francisco and will forever be grateful for his sympathetic ear and inquisitive mind. The process went on for about a year, culminating with the last test, a MRI to rule out MS. Multiple Sclerosis scared the shit out of me, for I knew it could indeed be life threatening, but when the imaging came back negative I fell apart. WHAT THE HELL WAS WRONG WITH ME??? Was I forever locked in a pseudo-livable world of sickness and misery entirely of my own fabrication? How could I get better if no one could tell me what was wrong? My faith in modern medicine crumbled, as did my faith in myself, a future, and every naysayer telling me to "get over it" or "it is all in my head" or "this is what lazy people do to avoid having to work". My doctor eventually ruled Chronic Fatigue Syndrome as the culprit, but had no treatment, cure, management, nothing!
My husband and I planned a long and relaxing camping trip to celebrate my birthday and our 5th anniversary. Money for anything more had already been spent on medical bills. It was during this week that full-blown Fibromyalgia knocked me on my ass. I ached and throbbed everywhere and COULD NOT SLEEP. I spent 6 days at our beautiful lake-front campsite in a daze of exhaustion, floating on the surface of the glimmering water, internally burning in the radiant sun, roasting marshmallows around a cozy fire utterly confused. My husband was so supportive but had no idea what to do. We returned from our hiatus and about a month later I totally broke down and thus began my 7 months on disability. Oh this is when it really got good...
Battling with my doctors to extend my disability when I could leave my house for maybe 20 minutes at a time was hell. Getting my family to understand was darn near impossible. My friends dropped off, having nothing in common with a sick and whinny former life-of-the-party. My largest challenge was with my parents. They love me so, I know, but neither of them had ever been through chronic illness and each suggestion they threw at me was met with a hyper-sensitive and often hysterical reaction. They just did not understand, did not get it. They came to visit right after Christmas and I catered dinner in. Cooking? Ha ha ha. But just setting the table and opening a bottle of wine sent me over the edge, and no one was grasping how bad this really was.
I finally reached a point where I had to take a break. Remove myself from the endless suggestions and doubt. I sent email to everyone I knew, informing them I was "on retreat" and would be back in communication in 2 weeks. That was quite possibly the best thing I could have ever done. I sat in my apartment and pondered. I wrote, I thought, I spent so much time alone and was really able to get inside my own head and make some progress. I was able to put my parents in proper perspective and see it was truly their love and concern driving their grasping attempts at offensive advice, but their human inexperience saying the wrong things. I believe during this time I finally "grew-up". I stopped looking for mommy and daddy to wave their magic wand and fix everything. I stopped expecting the approval and belief of anyone other than a few handful that had supported me unconditionally along the way. I was able to tap into a life-long deep-need for approval and throw it away! It was during this time I became determined to get better, as well. So when I came off "retreat" I was clearer and more determined than ever to surround myself with positivity and improvement. I stopped listening to those that teased me about just not wanting to work or condemned me for "being ill" when nothing was wrong. I stopped caring if I was doubted and did not absorb or retain criticism. I set out to find answers and find health!
It can be done, my friends. 1 step forward and often 3 steps back, but keep on keepin' on! Exploit your "healthy" look and use it to your best advantage. Fluff and primp and press yourself into the appearance of a calm, rational, believable, level-headed confusedly sick person. Project an attitude of hope and grace and perseverance. Many will still look at you and doubt, but that is their problem, not yours! Low expectations of others leads to no disappointment...and one day when you have some semblance of your life back, and you have some control over your body again, the sweetest revenge is simply not caring enough to say anything at all.
Thanks for joining,
Leah
Saturday, August 14, 2010
The Blue Angels
Back in 2006 the U.S. Navy's Flight Demonstration Squadron, known as the Blue Angels, were scheduled to dart, bob and weave over North Beach in San Francisco during their annual show-stopping display. It was a performance I had seen many times before, simply walking up to my apartment rooftop and gazing across the magnificent San Francisco Bay, enjoying the rush of excitement and closeness to the frenzied action as the planes thundered and nose-dived on top of me, pulling up and away at just the last second of safety, or so it felt. My husband, sadly, had not been so lucky. Our years in San Francisco were harried and intense for him as he pursued 2 finance bachelors degrees full-time while working full-time as well. He was very busy and missed most of the uniquely San Francisco weekend experiences due to fulfillment of his hectic responsibilities. But he had now graduated and we had moved to the Peninsula, and despite my mounting mystery sickness had scheduled a chiropractor appointment in the City with a leisurely afternoon of Blue Angels viewing and city-hangin'.
But I just could not do it. Just attending the chiropractic appointment took every ounce of energy my Fibromyalgia-Chronic Fatigue Syndrome-racked body possessed. And as we left Pacific Heights and headed toward North Beach tears sprung from my eyes. I could barely move, and I knew how excited to finally see this magnificent display he was, and how badly he needed a day of fun to mix up his long work days and stress from my increasing health woe's. There was not 1 ounce of anything I could pull from myself to proceed with our plans, and as I sobbed out my needs I visibly watched the life drain from his body as he slumped over the steering wheel and set his jaw in a tensely-bound square. The guilt radiating from my body matched the despair shock-waving from his as he turned the car toward home. I knew I was ruining his life and was powerless to stop it. I begged and pleaded with him to understand, get in my head and see how bad off I was, not giving him the right to his own feelings of anger and frustration he was so badly due.
This is but 1 of the countless multitude of times my health problems screwed up our plans for life. But the memory is so acute, so pointed. Such a glowing example of what these diseases rob from you and yours. The people we depend on so desperately to get us through, shelter our sick and throbbing bodies from the harshness of the outside world. It has taken me years to get out of my own head and begin to let him feel his feelings. Feelings he compressed deep inside and shoved out of the way because it was just not practical for us both to fall apart at the same time, not possible. I did him a major disservice, but believe I did the best I could at the time. As my health returns and light and laughter and springing steps once again envelope our union, his tightly-wound and deeply suppressed emotions are rushing forward. And I must deal with them. I must encourage him to talk about it, tell me how mad he is at me for getting sick, knowing it was not my fault, and then feeling guilty for his anger. I must listen as he pours out his frustration and sorrow he was forced to bottle up inside for so many years because everything was simply about me. I must listen with compassion and grace and understanding and NOT OWN THIS, not get defensive or feel guilty or take it personally. This is simply and truthfully what happened to us, and we must process and move on. For it is in living and rejoicing in the now that we can heal the past. But I have not forgotten what I owe him, a Blue Angels nose dive on top of his head, and one day soon I hope to replace that painful and missing experience. Do the Blue Angels come to Arizona?
Thanks for joining,
Leah
But I just could not do it. Just attending the chiropractic appointment took every ounce of energy my Fibromyalgia-Chronic Fatigue Syndrome-racked body possessed. And as we left Pacific Heights and headed toward North Beach tears sprung from my eyes. I could barely move, and I knew how excited to finally see this magnificent display he was, and how badly he needed a day of fun to mix up his long work days and stress from my increasing health woe's. There was not 1 ounce of anything I could pull from myself to proceed with our plans, and as I sobbed out my needs I visibly watched the life drain from his body as he slumped over the steering wheel and set his jaw in a tensely-bound square. The guilt radiating from my body matched the despair shock-waving from his as he turned the car toward home. I knew I was ruining his life and was powerless to stop it. I begged and pleaded with him to understand, get in my head and see how bad off I was, not giving him the right to his own feelings of anger and frustration he was so badly due.
This is but 1 of the countless multitude of times my health problems screwed up our plans for life. But the memory is so acute, so pointed. Such a glowing example of what these diseases rob from you and yours. The people we depend on so desperately to get us through, shelter our sick and throbbing bodies from the harshness of the outside world. It has taken me years to get out of my own head and begin to let him feel his feelings. Feelings he compressed deep inside and shoved out of the way because it was just not practical for us both to fall apart at the same time, not possible. I did him a major disservice, but believe I did the best I could at the time. As my health returns and light and laughter and springing steps once again envelope our union, his tightly-wound and deeply suppressed emotions are rushing forward. And I must deal with them. I must encourage him to talk about it, tell me how mad he is at me for getting sick, knowing it was not my fault, and then feeling guilty for his anger. I must listen as he pours out his frustration and sorrow he was forced to bottle up inside for so many years because everything was simply about me. I must listen with compassion and grace and understanding and NOT OWN THIS, not get defensive or feel guilty or take it personally. This is simply and truthfully what happened to us, and we must process and move on. For it is in living and rejoicing in the now that we can heal the past. But I have not forgotten what I owe him, a Blue Angels nose dive on top of his head, and one day soon I hope to replace that painful and missing experience. Do the Blue Angels come to Arizona?
Thanks for joining,
Leah
Friday, August 13, 2010
Fibromyalgia Support Group
When I first became ill in 2005 I was so confused and misunderstood. No doctor could tell me what was wrong with me besides depression (yeah, that's all...) and treated me like a mental case for even asking for legal modification to my work schedule in order to keep my job. I was sick and getting sicker and did not quite believe myself, that it was not all in my head, or my pathetic excuse at laziness to avoid having to be an adult and move forward in my life, or some physical manifestation of my myriad of genetic and depressive disorders. So blame and question myself I did. Thank God my husband did not. He believed in me and loved me enough to stand beside me the entire time. The entire mentally-unstable, bitching, moaning, complaining, lashing-out-at-him because there was no-one-else-to time. I know how truly lucky I am. I also know that I would not have made it through if not for his unquestioning love and support. I hear tales of spouses leaving, sick and tired of their sick and tired they vowed to love in sickness and health. As money, work and lifestyle all flush down the rabbit-hole of normalcy into chaos, they bail. Leaving a person already so raw and stripped bare completely alone. Shame on them! Those sins will be answered for, if not in this life than surely in the next.
I searched for support groups, someone to tell me I was not loony, there were others that understood and had been there, were there, for crying out loud! But every attempt, every turned-over stone left me so very alone as no real network ever revealed itself. So I just gave up, and got desperate, and threw my credit-card at any doctor that would promise to make me better, and set out to get over it. This still-unnamed disease that was quickly disintegrating my body into a mush of pain, exhaustion and fear did not hold a promise of any kind of future. I was 28 years-old and had too much to live for and feared my eminent demise if I did not at least try to get better. Better from what, I still did not know. The Fibro & Fatigue Center in Las Vegas was my high-priced saving grace. They diagnosed my virals of CMV, EBV and HHV-6 as responsible for the Chronic Fatigue Syndrome, along with many other infections caused by the breakdown of my central nervous system from the viruses. They understood and had success in treating patients with this condition. They exploited the best of holistic and modern medicine to their advantage and I did recover from the viruses and built my immune system back from the ground-up, keeping it on top of the now-dormant but never-gone viruses. I took a drug that was a major risk, Valcyte. A cancer-causing carcinogenic, it was a powerful anti-viral and no joke. I had to make a decision; was quality of life now worth potentially cutting my life short at the end? Hell yeah it was! And it worked, after two rounds and tons of other drugs and a bunch of other stuff. But by then the Fibromyalgia had settled in, my nerves damaged from such a long journey of untreated infection. And that is where I sit today. Recovered from CFS and managing my Fibromyalgia. My life is not what it was before, but is so much better than what it had been.
If I can offer any words of encouragement to my fellow-Fibro-friends it is to keep searching. Search for the support of those you know and love, search for the friendship of others that understand and are in the trenches with you. Search for doctors and drugs to heal and manage your daily life, work and responsibilities. Search for a way to laugh a little bit every day and DO NOT LET YOURSELF SUCCUMB TO THIS DISEASE! Oh so much easier said than done, I know, but as long as you are living a life, it mine as well be a life worth living.
Thanks for joining,
Leah
I searched for support groups, someone to tell me I was not loony, there were others that understood and had been there, were there, for crying out loud! But every attempt, every turned-over stone left me so very alone as no real network ever revealed itself. So I just gave up, and got desperate, and threw my credit-card at any doctor that would promise to make me better, and set out to get over it. This still-unnamed disease that was quickly disintegrating my body into a mush of pain, exhaustion and fear did not hold a promise of any kind of future. I was 28 years-old and had too much to live for and feared my eminent demise if I did not at least try to get better. Better from what, I still did not know. The Fibro & Fatigue Center in Las Vegas was my high-priced saving grace. They diagnosed my virals of CMV, EBV and HHV-6 as responsible for the Chronic Fatigue Syndrome, along with many other infections caused by the breakdown of my central nervous system from the viruses. They understood and had success in treating patients with this condition. They exploited the best of holistic and modern medicine to their advantage and I did recover from the viruses and built my immune system back from the ground-up, keeping it on top of the now-dormant but never-gone viruses. I took a drug that was a major risk, Valcyte. A cancer-causing carcinogenic, it was a powerful anti-viral and no joke. I had to make a decision; was quality of life now worth potentially cutting my life short at the end? Hell yeah it was! And it worked, after two rounds and tons of other drugs and a bunch of other stuff. But by then the Fibromyalgia had settled in, my nerves damaged from such a long journey of untreated infection. And that is where I sit today. Recovered from CFS and managing my Fibromyalgia. My life is not what it was before, but is so much better than what it had been.
If I can offer any words of encouragement to my fellow-Fibro-friends it is to keep searching. Search for the support of those you know and love, search for the friendship of others that understand and are in the trenches with you. Search for doctors and drugs to heal and manage your daily life, work and responsibilities. Search for a way to laugh a little bit every day and DO NOT LET YOURSELF SUCCUMB TO THIS DISEASE! Oh so much easier said than done, I know, but as long as you are living a life, it mine as well be a life worth living.
Thanks for joining,
Leah
Thursday, August 12, 2010
Ode' To Prednisone
Oh Prednisone, what a double edged sword you are! I am taking you to keep the blood vessels in my brain open so I don't stroke again, but you are doing so much more for me than that. First and foremost, Fibromyalgia has taken a vacation from my body and I am in ecstasy! No pain, no stiffness. I can crack and pop my back with the slightest twists and turns. I can go go go...but therein lies the problem...I am a bonafide crack-head! I am manic and hyper and prone to fits of rage. I can't sleep or even really sit down to watch TV without Xanax, and the manipulation of my body with all these medications seems so wrong. I am only taking you for a short while, for if I can get through the first 12 weeks post-Vasculitius RCVS without another stroke I am in the clear (they say). But you are consuming me in the process! I am shaky to the point that applying eye liner is impossible, so how am I going to go back to work? I am bouncing my legs, feet, something at all times and am typing so fast I cannot even keep up with my own thoughts. If I don't eat it magnifies this all the more, and I really don't want to gain weight on you, having just lost the 30 lbs. Lyrica packed on. Oh Prednisone, my hated friend...
As I am networking with fellow Fibro-friends what strikes me is how many different and vast problems we all have. Fibromyalgia is but 1 of many diseases for me, and it seems to be that way for most of the rest I am chatting with. Can we take a step back and look at the bigger picture? The total health cycle of your body is breaking down...why? I credit much of modern society's thoughts and ideals, practices and lifestyles with this, and maybe it is attacking the weak first? Is that who we are? Are we the vulnerable, genetically or otherwise? Is this a Darwinist tweak in the survival of the fittest? No, I don't think so. I believe we are the sensitive and real. We are not capable of existing in the modern-day madness that comprises life today and our bodies have forced us to take a step back. We are the first that this materialistic-fake-consumption-ego-competitive lifestyle has offended. And by virtue of pure necessity we are forced to withdrawal. Withdrawal from the type-A high-stress lifestyle, the super achievers who don't sleep enough and don't eat real food enough and don't exercise enough and simply don't feel enough but expect from ourselves beyond-human results. We are forced to shed those habits and expectations. Only when I found peace with my true-self was I able to begin healing. The pain is overwhelming and makes us SO angry! Why me? What do I do? Is this really going to take me down? For in the real world we all need money to survive and most are required to work for it, but who can work with this pain, this unreal and often not-believed pain? Who can be a happy spouse or supportive parent or excellent employee or a confident and contributing member of society with pain and sickness coursing through every inch of our beings?
So take a step back with me, and let's take a deep breath, and see if we can't start to love ourselves again. No more criticism of not getting enough done. Rejoice in what does get done. Re-define your expectations and be kinder and gentler to yourself. Simplify your lifestyle and surround yourself with those that love and believe in you, and lose the rest. Keep searching for that 1 doctor that will understand you and work with you through the myriad of medications until you find your right cocktail. Eat well and relax well and medicate the pain away if you have to, it's okay. Give yourself permission to suffer and hate it, and try to reach deep down inside and find the fight of your life, for that is the only way to get better.
Thanks for joining,
Leah
As I am networking with fellow Fibro-friends what strikes me is how many different and vast problems we all have. Fibromyalgia is but 1 of many diseases for me, and it seems to be that way for most of the rest I am chatting with. Can we take a step back and look at the bigger picture? The total health cycle of your body is breaking down...why? I credit much of modern society's thoughts and ideals, practices and lifestyles with this, and maybe it is attacking the weak first? Is that who we are? Are we the vulnerable, genetically or otherwise? Is this a Darwinist tweak in the survival of the fittest? No, I don't think so. I believe we are the sensitive and real. We are not capable of existing in the modern-day madness that comprises life today and our bodies have forced us to take a step back. We are the first that this materialistic-fake-consumption-ego-competitive lifestyle has offended. And by virtue of pure necessity we are forced to withdrawal. Withdrawal from the type-A high-stress lifestyle, the super achievers who don't sleep enough and don't eat real food enough and don't exercise enough and simply don't feel enough but expect from ourselves beyond-human results. We are forced to shed those habits and expectations. Only when I found peace with my true-self was I able to begin healing. The pain is overwhelming and makes us SO angry! Why me? What do I do? Is this really going to take me down? For in the real world we all need money to survive and most are required to work for it, but who can work with this pain, this unreal and often not-believed pain? Who can be a happy spouse or supportive parent or excellent employee or a confident and contributing member of society with pain and sickness coursing through every inch of our beings?
So take a step back with me, and let's take a deep breath, and see if we can't start to love ourselves again. No more criticism of not getting enough done. Rejoice in what does get done. Re-define your expectations and be kinder and gentler to yourself. Simplify your lifestyle and surround yourself with those that love and believe in you, and lose the rest. Keep searching for that 1 doctor that will understand you and work with you through the myriad of medications until you find your right cocktail. Eat well and relax well and medicate the pain away if you have to, it's okay. Give yourself permission to suffer and hate it, and try to reach deep down inside and find the fight of your life, for that is the only way to get better.
Thanks for joining,
Leah
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