The holidays are over. The hustle and bustle have stopped. The Christmas tree is put away. Outside it is calm. Cold, but calm.
And here I lay in a severe flare. Day 12 of it. It started as a baby flare right before Christmas and then the day after I was down for the count. But stubborn me, there was a friend in town visiting and so I made myself get dressed, interact, even go to the bookstore. Then I "rested" for a couple of days, had extremely minimal relief and went out again with said friend and her children. I felt the flare amp up immediately. My back started to ache- just from sitting in a car, picking up a child, and standing still while another child ran in circles around me holding onto my hands. The flare stretched on. 4 days later and I am in a worst state then before.
I am reminded of what it is like to be bedridden again. What it feels like to not have a few horrendous days tossed into the "normal" days. Normal is never normal. Not like healthy normal. It's more a muted ability to function, to run errands, have fatigue but not be unable to move, to be able to at least go to church once a week if you are really diligent about the A-Z steps in order to endure the outing.
When it gets like this anger comes back and helplessness and frustration. Last night I lay for an hour trying to muster up the energy to get up to use the restroom. I simply could not do it. The heart palpitations are drumming in their steady frantic dance, and I feel like this is it. This is life. I stare longingly out of this bedroom window and feel so bad that I would love to go on a walk. I could. I could force myself but that just means I would feel worse later and right now my limbs are so weak I doubt I would make it very far.
It's such a mind vs. body battle. I am stubborn. I am a hard-worker. I like to do things. Sitting around on a bed is not my idea of fun, and being in this position again is so maddening to me. I know it will pass, but just as surely another flare will come again. That's what this illness is. A lifetime, a system of checks and balances.
Last night I had one of those random rage attacks. I lose control. It happens rarely but when it does I am not myself. I am crying and so angry and I'm jerking around and wanting to not exist and I'm exemplifying behaviors that I am not proud of and the sweat is pouring. Last night was especially bad and I told someone I love so much that I hated him. I spit. I threw things. I have since found out that those episodes may be related to something in the brain short circuiting, or quite possibly a seizure. Not a seizure in the way we see them in the movies, but another kind. Something for me to talk about with whatever doctor I end up with. It's scary and most definitely not me. Not my words, not my feelings, not my attitude towards life. I was fine. Happy even. Peaceful. Then it came out of nowhere and just as suddenly as it comes on and I am myself again. It's overwhelming and then I feel like a monster.
I have no idea how I can sit here in this skin, in this body another day like this. I am miserable. I know all the growth, especially in these last several days of journaling and praying and seeking God intensely are are vital and valid and so amazing, but when on day 12 of one of the worst flares yet, it is pretty difficult to see any silver lining at all. All I feel is pain. All I feel is like there is no life behind these bones. It's like having a really bad flu, mixed with walking at a theme park or working on retail on your feet for 5 days straight with no reprieve after slumber or rest. It sucks.
People want a Peppermint Patty story to read. They want to hear the positives and the growth lessons and they want to feel like it's not that bad. I have to tell you, that good does not come unless the bad is shared. I won't lie to you or pretend that it's no big deal. That is false, that is prideful for me to hide the truth. I do not want your pity. Do not feel sorry for me. It is what it is. My intent in sharing the struggles as well as the growth moments is so that you will be able to understand that the victory is sweet only because of the turmoil, and there is a lot of victory.
Today is just a day, and each morning I wake up I hope and pray that Fibromyalgia and these viral infections and all of it will just be gone. That I will be healthy and able-bodied and able to work or go to school or play with children without repercussion again. That day has yet to come. Instead, I have the opportunity to learn and change and stretch spiritually in ways I never thought possible.
I mentioned in the previous post that God has been showing me a lot of things. Things about my own selfishness these last 2 years. It was necessary. I had nothing to give, but that season is transcending into the higher call to love unselfishly again, live unselfishly again, and to give myself away again. I was praying and asking God how He could still love me and bless me, and marveling at how as sucky as some things have been these 2 years, He has also blessed me in abundance. He was showing me all the many teachers in my life.... the faces of precious people who have been life lines of prayer and texting and encouragement. Even last night after my beastly behavior I received a glorious text from an old friend who spoke into my life and thanked me for loving her. Thanked me?! Then another friend and sister in the Lord messaged me on FB and said she loves me. Coincidence? NO way. The God of the universe used those messages to remind me that He is still using me, working through me despite my uglies, despite my health. That it's not about me, me, me. It's about giving away the love He has deposited in my heart that is huge and limitless. It was even more timely as I had just journaled that sweet, sweet revelation the night before. That I merited my success on my to-do's and what I had to offer by way of jobs and whatnot, but that is not my call. My call is to love. My call is to be so full of the Father that it pours out around me. LOVE. I also wore a night gown last night that coincidentally displayed that word like a banner. Aaron pointed it out to me as I sat sniffling after the attack. He had no idea what God had spoken into my spirit. So it went: revelation, attack, night gown, text, and then message. All LOVE. I was reminded that God doesn't need me to be perfect. I knew that but now I feel I know it just a bit more. He is taking my weaknesses.... my bad moods, my flesh, my imperfection, my pride, my limited capacity to understand all of this, and He is still moving. He brought me cross country in a car, gave me the gift of seeing the Grand Canyon, gave me the bond and love of a sweet child, blessed me with the beautiful gift of living in Glen Cove last year with the gorgeous water and bridge view and the trains going by with their musical sound. If He could do all that as I struggled through this, He most certainly can still bring me to Paris like I've always dreamed. He most certainly can bring me back to the Philippines. He is God. He is good and He is involved. Wow.
When I was praying the other night of all of these revelations I was thanking Him for the teachers in my life... the people, the places, the life... all of them teachers. I was thinking about how I have often times felt isolated and very sad and yet I have people tethered to me. People who lift me up, people who love me, people whose texts and well wishes and support have never once diminished. I got this glimpse of His people- all bound eternally together in His blood. Whoa, such a thrilling understanding. And I asked Him there in the garage, "how can you still love me? How can you love me even though I can be so angry? So selfish?" And the roar and whisper came, "Because you are mine." Over and over in my heart, "you are mine." And all I could do was cry in gratitude and awe. I belong to the God of the entire universe. I belong to Him. There is nothing I can do, nothing I can say that will make Him stop loving me so fiercely. From birth to life God is my only constant companion. Spouses and friends and loved ones will die. Experiences will come and go, but God is with me ever always. Doesn't that just blow your mind?! That God takes our messy, muddy tracks and still says, "You are so beautiful. You are still special to me. I can take your bad mood. I can take your anger. I can take your tears. Cry, yell, be sad, but come to Me." It took someone to tell me I had changed. Someone I hadn't seen in a long time. It stung. It made me recoil in pride and anger within. And then I mused on it. Yes, I have changed. Sickness, trial, life will do that. But I love change. I want to always be changing! I don't want to be the Janet of yesterday, I don't even want to be the Janet of now. I want to keep evolving, keep transforming, keep loving, keep giving. I was made to be a giver. I love serving, I love helping people. Fibro has made that almost impossible at times. Because of a comment meant to be negative I was able to face the reality that I had become quite grim. Understandable.... lots of change has occurred these last 2 years. Friends lost and gained, health a yo yo, medical treatments, the divorce of people close to me- dividing the home we all shared, leaving behind the child I've been with since she was born, moving, becoming poor and going on food stamps to get by, losing the job I loved so much, deaths, etc. So much. I was grim. It tends to happen that way around other people because everyday is survival mode. It takes immense concentration and effort to just do what comes naturally.... play, laugh, have conversations. Anyhow, in recognizing the rudeness and selfishness I was expending I remembered my call to give myself away. To choose others before myself. Oh, what a challenge when chronically ill!
I've been having wild dreams lately. God speaks to me a lot through dreams, and my psyche has been getting quite the workout lately. I love it! All of these issues are being dealt with in dream form, and I am able to take what I remember from them, pray on it, and ask for change and release. It's pretty exciting. I love dreams!
One huge realization is that I have been approaching God like I used to before I understood that grace is free. That once we are His we are His forever. Some pent up feelings came out, ones I had no idea I had. I cried and confessed that I felt like He was punishing me. I'm supposed to be His favorite (we all are) and I felt like if He loves me so much why have I been so sick? Now, I know why. I know that it is a blessing to share in His sufferings. I know that there is a purpose and that God is making beauty from ashes. Logically I know that, but lost in the realm of prayer, I just realized how although I prayed, although I am close to Papa, I was also approaching Him as if He is punishing me. Walking on eggshells and not conversing nearly as much as I used to, afraid of the silence at times. I started to think of God as the people in my life. Keeping me in the family, providing for me, loving me, but almost as if He was shunning me. I know that is not true, but emotions and the enemy pushed me into this box and I did not know it existed.
Acceptance has been in process for awhile. I take steps back sometimes- denial or anger, etc. I feel like a bird newly hatched or something. Like life is this new, fragile place because it's being lived in a way I've never lived. It's like 2 Janet's fighting and only one version gets to survive. I'm ready for some changes. I'm ready to re-focus and spend more time and energy on relationships I do have. I don't want that old version (before Fibro) but I definitely don't want to stay as the me I've been these last 2 years. Somewhere in the middle would be nice.
The thing is, I love people. So that spirit of complaint I've sullied in has got to go. I love texting. I love helping. I've wrestled with letting that part of myself go, but now I embrace it. LOVE. What an amazing gift! God has given me the joy and ability to love. I want to relish in that versus continually feeling burdened by the emotional demands of others. I still miss Mylie every single day, I still wish I wasn't sick, but I think I'm nearly done mourning my old life. The nannying, the old church. I'm ready to move on. Those relationships are still precious and active and a part of me. I will always love and be there for "my flock" but it's way overdue for me to start looking ahead and only ahead.
I am only 31 years old. I would always think, "Oh gosh! I am already 31. I'm old." But that's not true at all. I'm still young, I can still travel. If God can bring me cross country in a car then I CAN go to Paris someday. Albeit I will have difficulties and need to allot for my condition, but the value is that it is so possible. Everything used to feel impossible. Everything used to feel dismal. Everyone else having a life and me just sitting. Now I see the adventure that I've been given. I have sicknesses that allow me to pause. Before I steamrolled ahead every single day and rarely stopped to breathe, to rest, to delight in the moment. God is doing a work and it's not finished. I am still in the game. For a long time I felt like I just gave up. I felt like I was disappearing. I cannot even fully describe or understand or remember every single step that has brought me here. I long for Mylie, but I don't long for California. Home is wherever God has me, and ultimately any and all earthly homes I dwell within are only preparing me for my eternal home in heaven.
Like I mentioned above, I have many teachers and that has been one of the hugest blessings of all. I have not truly ever been alone. God has given me SO much. Books, friends, words, family, children. All of these essential and fundamental in this journey to wellness. Oh, the miles still seem so long, but now I march onward with purpose and new vision. To love, to give unselfishly, and yet not forgetting to be taken care of myself this time.
I'm scuffed up, worse for the wear, but strong. The strength of my King runs through these earthly veins. I am an heir to the God of the universe. The freaking universe.
My success is not measured by how many children I can bear or if I have a wedding ring on my finger, if I have a car or take vacations. It's not measured by how many friends I have in real life or on FB. It's not something that I have to strive for in the way that I once thought long ago. It's mind-boggling how we can be so enlightened and yet so naive sometimes. My success is in how I love. My success is in how I give my life away. WOW.
Even as I pray or journal I can get distracted. I want to pull away from that secret place with God and start blogging or sharing what He is speaking over me before He is even finished. Why? Even if no one else were to ever know those things, God has still revealed them to me. If I were stranded on an island or stuck in the pit of a physical grave, those insights would still matter. In this day of technology and posting our entire lives on numerous social networking sites, I believe much of the intimacy is lost between us and God, us and friends, us and and ourselves. We give so much away. That is not bad, but for me, I know that staying in His presence is more important to me then updating my status on FB.
Me and God. God and me. My one true, forever companion.
1 Corinthians 4:7-13
The Message (MSG)
For who do you know that really knows you, knows your heart? And even if they did, is there anything they would discover in you that you could take credit for? Isn't everything you have and everything you are sheer gifts from God? So what's the point of all this comparing and competing? You already have all you need. You already have more access to God than you can handle. Without bringing either Apollos or me into it, you're sitting on top of the world—at least God's world—and we're right there, sitting alongside you!
It seems to me that God has put us who bear his Message on stage in a theater in which no one wants to buy a ticket. We're something everyone stands around and stares at, like an accident in the street. We're the Messiah's misfits. You might be sure of yourselves, but we live in the midst of frailties and uncertainties. You might be well-thought-of by others, but we're mostly kicked around. Much of the time we don't have enough to eat, we wear patched and threadbare clothes, we get doors slammed in our faces, and we pick up odd jobs anywhere we can to eke out a living. When they call us names, we say, "God bless you." When they spread rumors about us, we put in a good word for them. We're treated like garbage, potato peelings from the culture's kitchen. And it's not getting any better.
*******
Today is a bad physical day. I feel trapped in my body. Nauseated. Heart palpitations. So exhausted in every limb, my brain is slow, I am frustrated, and still my heart can sing and soar because I am His.
And any day I can say that is a good day indeed.
<3
Thursday, January 5, 2012
Tuesday, January 3, 2012
Scripture
Lately Abba has been sifting my heart and revealing a lot of nuggets that I was not willing to be still and listen to before. Most especially He speaks to me through my dreams and these last few nights I've had some mighty intense ones. Imagine my delight upon waking up and reading this beautiful psalm. The verse I love most especially today is in bold lettering. I will share at a later time. I realized during prayer last night that a lot of times I feel distracted because I am so eager to share what God is speaking into my spirit that I pull away from Him way before He would like me too. His desire is to have intimacy with us, with me and even though I feel Him and know He is with me always, I have been holding back. He also revealed to me why I have been doing that, choosing to be distracted versus sitting at His feet like I love more than anything. So I share this scripture with you today as I marinate on the sweetness and splendor of His love. It's not about Twitter or Facebook or even blogger. Yes, sharing what he is showing us is beneficial and necessary, but more so is taking the time to be only His. ONLY. I love that!
Psalm 16 (The Message)
Keep me safe, O God, I've run for dear life to you.
I say to God, "Be my Lord!"
Without you, nothing makes sense.
And these God-chosen lives all around—
what splendid friends they make!
Don't just go shopping for a god.
Gods are not for sale.
I swear I'll never treat god-names
like brand-names.
My choice is you, God, first and only.
And now I find I'm your choice!
You set me up with a house and yard.
And then you made me your heir!
The wise counsel God gives when I'm awake
is confirmed by my sleeping heart.
Day and night I'll stick with God;
I've got a good thing going and I'm not letting go.
I'm happy from the inside out,
and from the outside in, I'm firmly formed.
You canceled my ticket to hell—
that's not my destination!
Now you've got my feet on the life path,
all radiant from the shining of your face.
Ever since you took my hand,
I'm on the right way.
Wow. Read it again. What a promise! What a life He's given!
Psalm 16 (The Message)
Keep me safe, O God, I've run for dear life to you.
I say to God, "Be my Lord!"
Without you, nothing makes sense.
And these God-chosen lives all around—
what splendid friends they make!
Don't just go shopping for a god.
Gods are not for sale.
I swear I'll never treat god-names
like brand-names.
My choice is you, God, first and only.
And now I find I'm your choice!
You set me up with a house and yard.
And then you made me your heir!
The wise counsel God gives when I'm awake
is confirmed by my sleeping heart.
Day and night I'll stick with God;
I've got a good thing going and I'm not letting go.
I'm happy from the inside out,
and from the outside in, I'm firmly formed.
You canceled my ticket to hell—
that's not my destination!
Now you've got my feet on the life path,
all radiant from the shining of your face.
Ever since you took my hand,
I'm on the right way.
Wow. Read it again. What a promise! What a life He's given!
Saturday, December 31, 2011
For Those Wondering About Fibro
When people ask me to define what Fibromyalgia is I sometimes stumble over just what to say. Honestly saying I am exhausted all day, every single day and saying it is an issue with my central nervous system and immune system and that I am in pain 24;7 does not do it justice. There is one article (below) that simplifies it, but there are so many more articles to read. The thing is, read them and test them to your own life. Not everyone of us who struggle with Fibro is going to have it the same exact way, though we do share the common pool of symptoms that occur on a daily basis.
Bottom line, be your own advocate. It is disheartening, I know. I think most of us have been told we are crazy, "it's all in your head," or "push through." We've had doctors who brush us off because they cannot figure out what is wrong with us, and we've had people we thought would be in our lives forever walk away because the truth is Fibromayalgia IS hard and it is a lot of work for both the one who has it and those closest to them.
A little over 2 years ago is when occasional symptoms (migraines, vertigo, chronic fatigue, chest pains, and constantly feeling unwell) gave way to that downfall of which I have yet to recover. 2010 was spent in ER after ER, doctor after doctor, symptom after symptom, viruses, infections, and then the fatigue became debilitating transforming me ever so slowly into a homebody and a mood ball. 2011 was me barely hanging on by a thread, lots of drama involving people dear to me, loss, a huge move, leaving behind a piece of my heart in California, appointments every single week, pain, depression, anxiety, finally finding a doctor who took me seriously at a Fibromyalgia clinic, and starting treatment.
It has been a very rocky road.
I have learned along the way from so many wonderful people who have shared their stories and hearts with me. Here are some things that seemed SO very impossible when stumbling around in the dark, without an official diagnosis and without a grip on what reality actually was. At my darkest of moments I honestly did wonder if I was crazy. It seemed impossible to go from healthy to whatever I was just like that.
1. Believe in yourself. You are NOT crazy. You are sick. It is real and it has changed your life.
2. Allow yourself to go through the stages of grief: Denial, Anger, Bargaining, Depression, and Acceptance. I am still in process and they jump around sometimes. They don't always happen in order. Right now I am in acceptance but it was not an easy road to get here. It's brand new- only a couple of months old and very fragile. I flit easily back into anger or depression and even denial and bargaining when there is even the slightest reprieve in my body, but the victory of even seeing the possibility of life full of sunshine again is proof positive that the world DOES start to bring beams of hope again.
3. Journal, blog, talk about what is going on. A lot of times people ask and don't really want the nitty gritty deatils about Fibromyalgia. Tell them anyway. Our disease is misunderstood and looked down on. It is our responsibility to advocate for ourselves. You are not alone. There are so many out there suffering from this and we need to be heard. It's also a great encouragement to me and others out there to hear about YOUR story. One of my best friends is someone who I met via Blogger. Now we interact daily and her fight has become mine and vice versa. I honestly don't think I would have made it without her prayers and support.
4. Pray and seek God in your circumstances. If you don't believe in God, meditate. Soak in silence and let yourself feel and process what is happening to you.
5. Find a support group. I tried to go to one in person but it was too difficult so I started searching online for blogs and information and got connected to The Fibromyalgia Funhouse on Facebook and met some amazing women and men. Now there is a whole support system. On my worst days I can always go online and connect with people who know exactly what I am going through and who never judge me or make me feel bad about it all. These friendships have become essential and very deep.
This helps especially when "normals" start to drop like flies around you or when friends and family refuse to acknowledge your illness.
Here is a great place to get connected and help raise awareness:
http://www.fibromyalgiacrusade.com/
http://chroniclesoffibro.blogspot.com/
Other blogs the encourage me:
http://alexandria-jesus-fybro.blogspot.com/
http://kissesfromkatie.blogspot.com/
http://myfibrofight.blogspot.com/
http://hollipocket.blogspot.com/
6.Let yourself be lifted up. I struggle with this. It's hard not to feel like a monster when snappish, feeling sick all of the time, not being able to entertain friends well anymore, having to say no, and generally being like a pill to friends and family.... but you are not broken, you are not a beast. You ARE sick. Think about it.... when "normals" are sick with the flu are they walking around whistling or are they in bed and a bit grumpy? Be nice to yourself. Easier said then done. I know.
7. Find out what foods affect your system negatively and try to avoid them. For me it is chocolate, sugar, greasy foods, marinara sauce, etc. I have yet to master this. ;) Incorporate leafy greens and tons of water to clear out your toxins (which is something us with Fibro have a hard time with.
8. Find a doctor who will take you seriously. It may take quite awhile but there is one out there. Get specific blood tests such as Natural Killers Cells function (which will tell you what percent your immune system is working), thyroid disorders, diabetes, parasites, bacterial infections, viral infections (HHV6, HHV7, EBV, Lyme disease, autoimmune diseases,etc). Candida is a HUGE deal and can be a huge contributer and add up to 15lbs to your gut. If you are experiencing chronic yeast infections or have it in your mouth or IBS is out of control you may need prescription medication to kill the candida off. Get the right medications for YOU. Lyrica works for some and doesn't for others and a lot of supplements will help rebuild your immune system (especially magnesium malate, vitamin c, and vitamin d). One thing to remember and also share with your people is that none of our diseases are individual. Our immune systems are compromised which allows for us to catch whatever is swirling around in the air. No one knows what comes first in our bodies- the viral infections/other ailments or the Fibromyalgia. Regardless, we are working with an empty tank of gas almost every single day physically and EVERY SINGLE issue (a cold, the flu, arthritis, the cold, mold, seizures, IBS, etc) all works together to break us down. So saying we have Fibromyalgia hardly begins to cover the extent of what our illness means for daily living.
9. Rest when you can. Exercise when you can. It's hard. We feel like going, going, going. That's usually why we ended up here. ;) We're the Doers and it's hard to put that down when we get sick. We're so used to taking care of everyone else. So learn your pace and don't let anyone else make you feel bad for what YOU require to feel better. I struggle with this a lot. On days that I feel well I take off and do, do, do! Like I don't have Fibromyalgia, but I do. So with 2012 coming my vow to myself is to put my feet up more, take naps, and say no whenever I don't feel that it would be beneficial for my body. It's not your fault that you are sick. I'll keep saying that.
10. Let go of toxic relationships. I am still working on this. We can't handle stress like we used to. People don't like that we've changed. They make us feel bad. We make ourselves feel bad. We've got to let these emotional vampires go. When you figure out how to do this, please do let me know.
11. Learn to say NO! This is hard for me. I have always been a yes person. A people pleaser. A social butterfly. Not good! Those are not things to boast about. Saying no does not make you weak. In fact it takes more strength to implement boundaries and verbalize them. If you cannot make it to church or to a party, oh well. Yes, it's really that cut-throat. This is a battle. This is your body. If you don't take care of it, it will stay broken down. If there is an event you must got to, plan to rest for a few days afterwards to recover.
12. Earplugs are your best friend. Carry them in your purse, pockets, car, or diaper bag. If you go to the movies the earplugs will allow for a more pleasurable experience. Right now I am wearing one while watching a movie with family.
There is a lot more I could say and a lot I have left to learn. The list above is what has been beneficial for me and it took 2 years to get to a place where I even feel like I could compile a list at all. My life is not easy and I will never pretend that we can "just" do these things to magically feel better. There is no magic cure. No potion, no bracelet, no book. It's hard work and many a person will tell you that if you "only do this and that you will be better!"
Tell them to walk a mile in your Fibromyalgia shoes and then say that again. ;)
Here is that article:
"Fibromyalgia is a complex condition that's difficult to understand, especially if you don't have a medical degree. Because it involves the brain and nervous system, fibromyalgia can have an impact on virtually every part of the body.
If you're trying to understand this condition in someone you know, it can be incredibly confusing. When a lot of people see a bizarre collection of fluctuating symptoms that don't show up in medical tests, they decide fibromyalgia must be a psychological problem. A host of scientific evidence, however, proves that it's a very real physical condition.
Digging through that scientific research doesn't help most of us, though. Terms like neurotransmitter dysregulation, nociceptors, cellular enzymes and opiate pathways aren't exactly easy to grasp.
The goal of this article is to help you understand and relate to what's going on in the body of someone with fibromyalgia, in plain terms and without medical jargon. At the end of each section, you'll find relevant medical terms with links to definitions. They'll be helpful if you want to go beyond a basic understanding, but you don't need to understand the terms to get through this article.
Understanding the Pain of Fibromyalgia
Imagine you're planning a party and expecting about 20 guests. Three or four friends told you they'd come early to help you out. But they don't show, and instead of 20 guests, you get 100. You're overwhelmed.
That's what's happening with pain signals in someone who has fibromyalgia. The cells send too many pain messages (party guests), up to five times as many as in a healthy person. That can turn mild pressure or even an itch into pain.
When those pain signals reach the brain, they're processed by something called serotonin. People with fibromyalgia, however, don't have enough serotonin (the friends who didn't show up to help), leaving the brain overwhelmed.
This is why people with fibromyalgia have pain in tissues that show no sign of damage. It's not imagined pain; it's misinterpreted sensation that the brain turns into actual pain.
Other substances in the patient's brain amplify a host of other signals -- essentially, "turning up the volume" of everything. That can include light, noise and odor on top of pain, and it can further overload the brain. This can lead to confusion, fear, anxiety and panic attacks.
Related terms
Substance P
Serotonin
Glutamate
Understanding the Ups & Downs of Fibromyalgia
Most people with a chronic illness are always sick. The effects on the body of cancer, a virus, or a degenerative disease are fairly constant. It's understandably confusing to see someone with fibromyalgia be unable to do something on Monday, yet perfectly capable of it on Wednesday.
Look at it this way: Everyone's hormones fluctuate, and even things like weight and blood pressure can rise and fall during the course of a day, week or month. All of the systems and substances in the body work that way, rising and falling in response to different situations.
Research shows conclusively that fibromyalgia involves abnormal levels of multiple hormones and other substances. Because those things all go up and down, sometimes one or more are in the normal zone and other times they're not. The more things that are out of the zone, the worse they'll feel.
Related term:
Flare-up
Understanding Stress & Fibromyalgia
Some people think fibromyalgia patients are emotionally incapable of dealing with stress, because a stressful situation will generally make symptoms worse.
The important thing to understand is that we respond to stress both emotionally and physically. A physical response, in everyone, includes a rush of adrenaline and other hormones that help kick your body into overdrive so you can deal with what's happening.
People with fibromyalgia don't have enough of those hormones, which makes stress very hard on their bodies and can trigger symptoms.
Also, when we talk about "stress" we usually mean the emotional kind, which can come from your job, a busy schedule, or personal conflict. A lot of things actually cause physical stress, such as illness, lack of sleep, nutritional deficiencies and injuries. Physical stress can have the same effect as emotional stress.
Related terms
Norephinephrine (noradrenaline)
Cortisol
HPA Axis
Understanding the Fatigue of Fibromyalgia
Think of a time when you were not just tired, but really exhausted. Maybe you were up all night studying for a test. Maybe you were up multiple times to feed a baby or take care of a sick child. Maybe it was the flu or strep throat.
Imagine being exhausted like that all day while you're trying to work, take care of kids, clean the house, cook dinner, etc. For most people, one or two good night's sleep would take that feeling away.
With fibromyalgia, though, comes sleep disorders that make a good night's sleep a rarity. A person with fibromyalgia can have anywhere from one to all of the following sleep disorders:
Insomnia (difficulty getting to sleep or staying asleep)
Inability to reach or stay in a deep sleep
Sleep apnea (breathing disturbances that can wake the person repeatedly)
Restless leg syndrome (twitching, jerking limbs that make it hard to sleep)
Periodic limb movement disorder (rhythmic, involuntary muscle contractions that prevent deep sleep)
Fibromyalgia In a Nutshell
A lot of illnesses involve one part of the body, or one system. Fibromyalgia, however, involves the entire body and throws all kinds of things out of whack. As bizarre and confusing as the varied symptoms may be, they're tied to very real physical causes.
Fibromyalgia can take someone who is educated, ambitious, hardworking and tireless, and rob them of their ability to work, clean house, exercise, think clearly and ever feel awake or healthy.
It's NOT psychological "burn out" or depression.
It's NOT laziness.
It's NOT whining or malingering.
It IS the result of widespread dysfunction in the body and the brain that's hard to understand, difficult to treat, and, so far, impossible to cure.
The hardest thing for patients, however, is having to live with it. Having the support and understanding of people in their lives can make it a lot easier."
Article
from:http://chronicfatigue.about.com/od/whatisfibromyalgia/a/understandfibro.htm
Happy New Year lovelies!
Bottom line, be your own advocate. It is disheartening, I know. I think most of us have been told we are crazy, "it's all in your head," or "push through." We've had doctors who brush us off because they cannot figure out what is wrong with us, and we've had people we thought would be in our lives forever walk away because the truth is Fibromayalgia IS hard and it is a lot of work for both the one who has it and those closest to them.
A little over 2 years ago is when occasional symptoms (migraines, vertigo, chronic fatigue, chest pains, and constantly feeling unwell) gave way to that downfall of which I have yet to recover. 2010 was spent in ER after ER, doctor after doctor, symptom after symptom, viruses, infections, and then the fatigue became debilitating transforming me ever so slowly into a homebody and a mood ball. 2011 was me barely hanging on by a thread, lots of drama involving people dear to me, loss, a huge move, leaving behind a piece of my heart in California, appointments every single week, pain, depression, anxiety, finally finding a doctor who took me seriously at a Fibromyalgia clinic, and starting treatment.
It has been a very rocky road.
I have learned along the way from so many wonderful people who have shared their stories and hearts with me. Here are some things that seemed SO very impossible when stumbling around in the dark, without an official diagnosis and without a grip on what reality actually was. At my darkest of moments I honestly did wonder if I was crazy. It seemed impossible to go from healthy to whatever I was just like that.
1. Believe in yourself. You are NOT crazy. You are sick. It is real and it has changed your life.
2. Allow yourself to go through the stages of grief: Denial, Anger, Bargaining, Depression, and Acceptance. I am still in process and they jump around sometimes. They don't always happen in order. Right now I am in acceptance but it was not an easy road to get here. It's brand new- only a couple of months old and very fragile. I flit easily back into anger or depression and even denial and bargaining when there is even the slightest reprieve in my body, but the victory of even seeing the possibility of life full of sunshine again is proof positive that the world DOES start to bring beams of hope again.
3. Journal, blog, talk about what is going on. A lot of times people ask and don't really want the nitty gritty deatils about Fibromyalgia. Tell them anyway. Our disease is misunderstood and looked down on. It is our responsibility to advocate for ourselves. You are not alone. There are so many out there suffering from this and we need to be heard. It's also a great encouragement to me and others out there to hear about YOUR story. One of my best friends is someone who I met via Blogger. Now we interact daily and her fight has become mine and vice versa. I honestly don't think I would have made it without her prayers and support.
4. Pray and seek God in your circumstances. If you don't believe in God, meditate. Soak in silence and let yourself feel and process what is happening to you.
5. Find a support group. I tried to go to one in person but it was too difficult so I started searching online for blogs and information and got connected to The Fibromyalgia Funhouse on Facebook and met some amazing women and men. Now there is a whole support system. On my worst days I can always go online and connect with people who know exactly what I am going through and who never judge me or make me feel bad about it all. These friendships have become essential and very deep.
This helps especially when "normals" start to drop like flies around you or when friends and family refuse to acknowledge your illness.
Here is a great place to get connected and help raise awareness:
http://www.fibromyalgiacrusade.com/
http://chroniclesoffibro.blogspot.com/
Other blogs the encourage me:
http://alexandria-jesus-fybro.blogspot.com/
http://kissesfromkatie.blogspot.com/
http://myfibrofight.blogspot.com/
http://hollipocket.blogspot.com/
6.Let yourself be lifted up. I struggle with this. It's hard not to feel like a monster when snappish, feeling sick all of the time, not being able to entertain friends well anymore, having to say no, and generally being like a pill to friends and family.... but you are not broken, you are not a beast. You ARE sick. Think about it.... when "normals" are sick with the flu are they walking around whistling or are they in bed and a bit grumpy? Be nice to yourself. Easier said then done. I know.
7. Find out what foods affect your system negatively and try to avoid them. For me it is chocolate, sugar, greasy foods, marinara sauce, etc. I have yet to master this. ;) Incorporate leafy greens and tons of water to clear out your toxins (which is something us with Fibro have a hard time with.
8. Find a doctor who will take you seriously. It may take quite awhile but there is one out there. Get specific blood tests such as Natural Killers Cells function (which will tell you what percent your immune system is working), thyroid disorders, diabetes, parasites, bacterial infections, viral infections (HHV6, HHV7, EBV, Lyme disease, autoimmune diseases,etc). Candida is a HUGE deal and can be a huge contributer and add up to 15lbs to your gut. If you are experiencing chronic yeast infections or have it in your mouth or IBS is out of control you may need prescription medication to kill the candida off. Get the right medications for YOU. Lyrica works for some and doesn't for others and a lot of supplements will help rebuild your immune system (especially magnesium malate, vitamin c, and vitamin d). One thing to remember and also share with your people is that none of our diseases are individual. Our immune systems are compromised which allows for us to catch whatever is swirling around in the air. No one knows what comes first in our bodies- the viral infections/other ailments or the Fibromyalgia. Regardless, we are working with an empty tank of gas almost every single day physically and EVERY SINGLE issue (a cold, the flu, arthritis, the cold, mold, seizures, IBS, etc) all works together to break us down. So saying we have Fibromyalgia hardly begins to cover the extent of what our illness means for daily living.
9. Rest when you can. Exercise when you can. It's hard. We feel like going, going, going. That's usually why we ended up here. ;) We're the Doers and it's hard to put that down when we get sick. We're so used to taking care of everyone else. So learn your pace and don't let anyone else make you feel bad for what YOU require to feel better. I struggle with this a lot. On days that I feel well I take off and do, do, do! Like I don't have Fibromyalgia, but I do. So with 2012 coming my vow to myself is to put my feet up more, take naps, and say no whenever I don't feel that it would be beneficial for my body. It's not your fault that you are sick. I'll keep saying that.
10. Let go of toxic relationships. I am still working on this. We can't handle stress like we used to. People don't like that we've changed. They make us feel bad. We make ourselves feel bad. We've got to let these emotional vampires go. When you figure out how to do this, please do let me know.
11. Learn to say NO! This is hard for me. I have always been a yes person. A people pleaser. A social butterfly. Not good! Those are not things to boast about. Saying no does not make you weak. In fact it takes more strength to implement boundaries and verbalize them. If you cannot make it to church or to a party, oh well. Yes, it's really that cut-throat. This is a battle. This is your body. If you don't take care of it, it will stay broken down. If there is an event you must got to, plan to rest for a few days afterwards to recover.
12. Earplugs are your best friend. Carry them in your purse, pockets, car, or diaper bag. If you go to the movies the earplugs will allow for a more pleasurable experience. Right now I am wearing one while watching a movie with family.
There is a lot more I could say and a lot I have left to learn. The list above is what has been beneficial for me and it took 2 years to get to a place where I even feel like I could compile a list at all. My life is not easy and I will never pretend that we can "just" do these things to magically feel better. There is no magic cure. No potion, no bracelet, no book. It's hard work and many a person will tell you that if you "only do this and that you will be better!"
Tell them to walk a mile in your Fibromyalgia shoes and then say that again. ;)
Here is that article:
"Fibromyalgia is a complex condition that's difficult to understand, especially if you don't have a medical degree. Because it involves the brain and nervous system, fibromyalgia can have an impact on virtually every part of the body.
If you're trying to understand this condition in someone you know, it can be incredibly confusing. When a lot of people see a bizarre collection of fluctuating symptoms that don't show up in medical tests, they decide fibromyalgia must be a psychological problem. A host of scientific evidence, however, proves that it's a very real physical condition.
Digging through that scientific research doesn't help most of us, though. Terms like neurotransmitter dysregulation, nociceptors, cellular enzymes and opiate pathways aren't exactly easy to grasp.
The goal of this article is to help you understand and relate to what's going on in the body of someone with fibromyalgia, in plain terms and without medical jargon. At the end of each section, you'll find relevant medical terms with links to definitions. They'll be helpful if you want to go beyond a basic understanding, but you don't need to understand the terms to get through this article.
Understanding the Pain of Fibromyalgia
Imagine you're planning a party and expecting about 20 guests. Three or four friends told you they'd come early to help you out. But they don't show, and instead of 20 guests, you get 100. You're overwhelmed.
That's what's happening with pain signals in someone who has fibromyalgia. The cells send too many pain messages (party guests), up to five times as many as in a healthy person. That can turn mild pressure or even an itch into pain.
When those pain signals reach the brain, they're processed by something called serotonin. People with fibromyalgia, however, don't have enough serotonin (the friends who didn't show up to help), leaving the brain overwhelmed.
This is why people with fibromyalgia have pain in tissues that show no sign of damage. It's not imagined pain; it's misinterpreted sensation that the brain turns into actual pain.
Other substances in the patient's brain amplify a host of other signals -- essentially, "turning up the volume" of everything. That can include light, noise and odor on top of pain, and it can further overload the brain. This can lead to confusion, fear, anxiety and panic attacks.
Related terms
Substance P
Serotonin
Glutamate
Understanding the Ups & Downs of Fibromyalgia
Most people with a chronic illness are always sick. The effects on the body of cancer, a virus, or a degenerative disease are fairly constant. It's understandably confusing to see someone with fibromyalgia be unable to do something on Monday, yet perfectly capable of it on Wednesday.
Look at it this way: Everyone's hormones fluctuate, and even things like weight and blood pressure can rise and fall during the course of a day, week or month. All of the systems and substances in the body work that way, rising and falling in response to different situations.
Research shows conclusively that fibromyalgia involves abnormal levels of multiple hormones and other substances. Because those things all go up and down, sometimes one or more are in the normal zone and other times they're not. The more things that are out of the zone, the worse they'll feel.
Related term:
Flare-up
Understanding Stress & Fibromyalgia
Some people think fibromyalgia patients are emotionally incapable of dealing with stress, because a stressful situation will generally make symptoms worse.
The important thing to understand is that we respond to stress both emotionally and physically. A physical response, in everyone, includes a rush of adrenaline and other hormones that help kick your body into overdrive so you can deal with what's happening.
People with fibromyalgia don't have enough of those hormones, which makes stress very hard on their bodies and can trigger symptoms.
Also, when we talk about "stress" we usually mean the emotional kind, which can come from your job, a busy schedule, or personal conflict. A lot of things actually cause physical stress, such as illness, lack of sleep, nutritional deficiencies and injuries. Physical stress can have the same effect as emotional stress.
Related terms
Norephinephrine (noradrenaline)
Cortisol
HPA Axis
Understanding the Fatigue of Fibromyalgia
Think of a time when you were not just tired, but really exhausted. Maybe you were up all night studying for a test. Maybe you were up multiple times to feed a baby or take care of a sick child. Maybe it was the flu or strep throat.
Imagine being exhausted like that all day while you're trying to work, take care of kids, clean the house, cook dinner, etc. For most people, one or two good night's sleep would take that feeling away.
With fibromyalgia, though, comes sleep disorders that make a good night's sleep a rarity. A person with fibromyalgia can have anywhere from one to all of the following sleep disorders:
Insomnia (difficulty getting to sleep or staying asleep)
Inability to reach or stay in a deep sleep
Sleep apnea (breathing disturbances that can wake the person repeatedly)
Restless leg syndrome (twitching, jerking limbs that make it hard to sleep)
Periodic limb movement disorder (rhythmic, involuntary muscle contractions that prevent deep sleep)
Fibromyalgia In a Nutshell
A lot of illnesses involve one part of the body, or one system. Fibromyalgia, however, involves the entire body and throws all kinds of things out of whack. As bizarre and confusing as the varied symptoms may be, they're tied to very real physical causes.
Fibromyalgia can take someone who is educated, ambitious, hardworking and tireless, and rob them of their ability to work, clean house, exercise, think clearly and ever feel awake or healthy.
It's NOT psychological "burn out" or depression.
It's NOT laziness.
It's NOT whining or malingering.
It IS the result of widespread dysfunction in the body and the brain that's hard to understand, difficult to treat, and, so far, impossible to cure.
The hardest thing for patients, however, is having to live with it. Having the support and understanding of people in their lives can make it a lot easier."
Article
from:http://chronicfatigue.about.com/od/whatisfibromyalgia/a/understandfibro.htm
Happy New Year lovelies!
Friday, December 30, 2011
Life and death.
This morning I woke up to a text with a photo of a beautiful baby girl born to 2 of my dearest friends.
Tonight another dear friend and her 2 children lost their precious husband/father to a brain tumor discovered a few months ago.
My mind spins, tears come unbidden. There is rejoicing. No more pain for his earthly body, no more sorrow. He is with Jesus and there is a welcome home party for him tonight in heaven. That is so beautiful, but my heart aches for the bride and children he left behind. I try to imagine how she is going about business.... brushing her teeth, pulling on socks, having conversations. I know she knew he was fading, but can anything ever fully prepare us for saying goodbye to the ones we love? When people die I always wonder, what was their last meal? What was their last thought? When was the last time they went to the restroom? Things like that. My heart hurts so much for her I almost can't stand it.
When I was 16 years old my grandma died on December 28th. I stayed each night in the hospital and watched as she got delirious and started to drift from us. One morning my auntie rushed in and told me "it's time." She and I went into that hospital room and as she prayed I held my grandma's already cold hand. We took the breathing mask off and I watched as her breaths became smaller and smaller until it was the very last one. She was gone. I was in shock. I went home and cried listening to The Tide is High and hugging a huge stuffed Winnie the Pooh I had. I had been close to her since I was born. She made me "french fried" and had been there my whole life. When I was a girl and she lived with us I would sleep with her every single night. I loved her fiercely.
Loss is painful. It doesn't matter if we know it is coming or not. Sorrow is sorrow.
This last night before the last night of 2011 I would like to say thank you to each person who has impacted my year. Not a one of you is insignificant. From the girl who used to make my sandwiches at Safeway in Glen Cove to the closest friend- you all matter so much more then you could ever know.
People have told me I have changed since I got sick. For a very long time I resisted that. I fought HARD to stay the same. I pretended to not be as sick as I was. I wanted to believe I could talk myself out of it. But now I am proud of who I am becoming. I may lose my temper easier, I may not be as physically strong, I may have had to modify almost every single area of my life to get through each day, but I have become more tender in dealing with my difficulties. I have met people who have the most beautiful souls despite their health conditions. I have learned that my tears are okay, that it's okay to be weak, and I have been brought to my knees in humility over and over.
And I want more. It doesn't feel good, but the thing is that it IS good. Every bit of being weened of my pride, my flesh.... it all brings me back to the place where I am on my face before the King of kings.
I am thankful. I am thankful that with pain comes a beauty so dazzling it almost cracks my heart in two.
God is good. He gives and He takes away. Our portion is set. Our boundaries hedged in. From birth to death with that dash of life in-between to make a difference on earth for His kingdom. What are you doing with Your dash? What have I been doing with mine? I long to glorify Him, to ooze Him wherever I go despite my failings in the flesh. I long to seek Him above all things, to choose Him even when others think I am crazy or trusting in the wrong thing.
I believe.
I know.
My God is good. My God is loving. My God is so beautiful.
I can choose to focus on the pains, and they are very real pains. I have had my cup of bitterness and resentment and anger, and yet I have also felt the cool refreshment of His embrace. This year has been a blur of memories, snapshots haphazard throughout my memory bank.
I bid adieu to 2011 and welcome all of the mountains and valleys of 2012.
This morning I woke up to a text with a photo of a beautiful baby girl born to 2 of my dearest friends.
Tonight another dear friend and her 2 children lost their precious husband/father to a brain tumor discovered a few months ago.
My mind spins, tears come unbidden. There is rejoicing. No more pain for his earthly body, no more sorrow. He is with Jesus and there is a welcome home party for him tonight in heaven. That is so beautiful, but my heart aches for the bride and children he left behind. I try to imagine how she is going about business.... brushing her teeth, pulling on socks, having conversations. I know she knew he was fading, but can anything ever fully prepare us for saying goodbye to the ones we love? When people die I always wonder, what was their last meal? What was their last thought? When was the last time they went to the restroom? Things like that. My heart hurts so much for her I almost can't stand it.
When I was 16 years old my grandma died on December 28th. I stayed each night in the hospital and watched as she got delirious and started to drift from us. One morning my auntie rushed in and told me "it's time." She and I went into that hospital room and as she prayed I held my grandma's already cold hand. We took the breathing mask off and I watched as her breaths became smaller and smaller until it was the very last one. She was gone. I was in shock. I went home and cried listening to The Tide is High and hugging a huge stuffed Winnie the Pooh I had. I had been close to her since I was born. She made me "french fried" and had been there my whole life. When I was a girl and she lived with us I would sleep with her every single night. I loved her fiercely.
Loss is painful. It doesn't matter if we know it is coming or not. Sorrow is sorrow.
This last night before the last night of 2011 I would like to say thank you to each person who has impacted my year. Not a one of you is insignificant. From the girl who used to make my sandwiches at Safeway in Glen Cove to the closest friend- you all matter so much more then you could ever know.
People have told me I have changed since I got sick. For a very long time I resisted that. I fought HARD to stay the same. I pretended to not be as sick as I was. I wanted to believe I could talk myself out of it. But now I am proud of who I am becoming. I may lose my temper easier, I may not be as physically strong, I may have had to modify almost every single area of my life to get through each day, but I have become more tender in dealing with my difficulties. I have met people who have the most beautiful souls despite their health conditions. I have learned that my tears are okay, that it's okay to be weak, and I have been brought to my knees in humility over and over.
And I want more. It doesn't feel good, but the thing is that it IS good. Every bit of being weened of my pride, my flesh.... it all brings me back to the place where I am on my face before the King of kings.
I am thankful. I am thankful that with pain comes a beauty so dazzling it almost cracks my heart in two.
God is good. He gives and He takes away. Our portion is set. Our boundaries hedged in. From birth to death with that dash of life in-between to make a difference on earth for His kingdom. What are you doing with Your dash? What have I been doing with mine? I long to glorify Him, to ooze Him wherever I go despite my failings in the flesh. I long to seek Him above all things, to choose Him even when others think I am crazy or trusting in the wrong thing.
I believe.
I know.
My God is good. My God is loving. My God is so beautiful.
I can choose to focus on the pains, and they are very real pains. I have had my cup of bitterness and resentment and anger, and yet I have also felt the cool refreshment of His embrace. This year has been a blur of memories, snapshots haphazard throughout my memory bank.
I bid adieu to 2011 and welcome all of the mountains and valleys of 2012.
Tuesday, December 27, 2011
This is the penalty for the last few days....
Yes, these last few days of Christmas Eve dinner and church, opening gifts, being on my feet, washing dishes, interacting with friends and family were all so much fun and very great mentally and spiritually....
Physically, on the other hand, is quite the warden.
Having fibro means that right now my feet and ankles and calves are swollen, my legs feel like I have been climbing mountains for days, my eyes are half closed. I misspell every other word but am determined to capture the sheer exhaustion right now. The heart palpitations have been back the last few days after a time without. My body is aching everywhere and I feel like screaming. It's what I imagine being on fire must feel like.
All of this pain.... yes, it is daily, but these last few have boded more activity than usual and so now it is like having jet lag and as if walking though Disneyland all day. I limp, I feel like keeling over, but I made it through the last few days. I got to enjoy Christmas. I remembered how much I love being around children. I am so thankful for the mother heart God has grown in me and for the privilege of having so many great kids in my life. It made my heart dance to have children around again, just as much as it made me miss my little Mylie so much more. This is my calling. I have always known it on some level. Ever since I was a young girl I've always loved taking care of other kids. I just wonder how I can do that ever again when it is so insanely hard. I can't be around people long, I have chronic fatigue, and I can't pick them up or tolerate games like I used to.
I miss being so active and the times that I trick myself into thinking I am being active are joyous memories. I am not lazy. I like being independent. I miss the me that could lift boxes of inventory, swing kids from my arms, dance and play and cradle little beings. I miss the me that didn't need help with everything.
Today I stood at the table trying to figure out how to lift the ketchup bottle and the night before it was a carton of milk to pour into the kids' cereal. It is absolutely humiliating. Then having to ask for help and have someone look at you like you are the laziest person on earth.... "how could she not lift a freaking carton of milk?"
It makes me feel needy. Makes me feel like I can't be that independent, individual person I used to be.
Right now I can barely concentrate. I just wanted to say that the repercussions we have to face with Fibro are excruciating.
I feel trapped in painful skin, muscle, and bone.
Yes, these last few days of Christmas Eve dinner and church, opening gifts, being on my feet, washing dishes, interacting with friends and family were all so much fun and very great mentally and spiritually....
Physically, on the other hand, is quite the warden.
Having fibro means that right now my feet and ankles and calves are swollen, my legs feel like I have been climbing mountains for days, my eyes are half closed. I misspell every other word but am determined to capture the sheer exhaustion right now. The heart palpitations have been back the last few days after a time without. My body is aching everywhere and I feel like screaming. It's what I imagine being on fire must feel like.
All of this pain.... yes, it is daily, but these last few have boded more activity than usual and so now it is like having jet lag and as if walking though Disneyland all day. I limp, I feel like keeling over, but I made it through the last few days. I got to enjoy Christmas. I remembered how much I love being around children. I am so thankful for the mother heart God has grown in me and for the privilege of having so many great kids in my life. It made my heart dance to have children around again, just as much as it made me miss my little Mylie so much more. This is my calling. I have always known it on some level. Ever since I was a young girl I've always loved taking care of other kids. I just wonder how I can do that ever again when it is so insanely hard. I can't be around people long, I have chronic fatigue, and I can't pick them up or tolerate games like I used to.
I miss being so active and the times that I trick myself into thinking I am being active are joyous memories. I am not lazy. I like being independent. I miss the me that could lift boxes of inventory, swing kids from my arms, dance and play and cradle little beings. I miss the me that didn't need help with everything.
Today I stood at the table trying to figure out how to lift the ketchup bottle and the night before it was a carton of milk to pour into the kids' cereal. It is absolutely humiliating. Then having to ask for help and have someone look at you like you are the laziest person on earth.... "how could she not lift a freaking carton of milk?"
It makes me feel needy. Makes me feel like I can't be that independent, individual person I used to be.
Right now I can barely concentrate. I just wanted to say that the repercussions we have to face with Fibro are excruciating.
I feel trapped in painful skin, muscle, and bone.
Sunday, December 25, 2011
The best things about this Christmas:
-being with family
-photos of Mylie and my niece and nephews
-handmade cards and artwork by the kiddies
-Christmas eve communion service at church
-Hello Kitty water dispenser
-one of my bestest friends coming to town unexpectedly!
-Paris decor suitcases
-skype and technology
-a surprise gift from a dear friend with a beanie, 3 homemade jars of jam, and a vanilla candle and earplugs galore! :)
-thoughtful cards and gifts
-my pink piggie mini pillow pet from Bunny <3
-food in my belly and a place to rest my head at night
-medication and access to medical attention when needed
-LOVE
-amazing family and friends
-photos!
-the gift of breath this morning and the promise of a new year
-the power of praying and being blessed to be asked to pray for people who are in my sphere (ANY TIME YOU NEED IT I WILL BE THERE FOR YOU!) even if I don't know them very well.
-a good margarita ;)
-a new snuggie!
-my delicious electric blanket
And so much more. God is so good to me.
I was thinking earlier about the birth of Jesus. Forget about the presents and the hoopla of Santa and gifts....
Our SAVIOR was born on Christmas. If Mary would not have been obedient, if she hadn't endured the scorn and disbelief at the Holy, immaculate conception birth.... if Joseph would not have listened to the angel of the Lord and married her....
would Jesus have been born?
So I am thankful, on this Christmas day, for Joseph and Mary for being open to the voice of the very same God we are in love with today. I pray my heart will be open like that all of the time. Not just when it is convenient for me.
Dear Jesus,
Happy Birthday! Thank you for your birth, your life, and your death on the cross for all of us. I am so in awe everyday that you chose me to love you. Thank you that although this year has been so hard, you have been more then faithful in all circumstances. You triumph sickness, depression, hardship, poverty, anger, and a host of other things all over this fallen world. I love you so much and I pray you would fill me new everyday. Pour into me so that I might pour always into others. You are my everything and I trust you.
Love,
Your Girl
-being with family
-photos of Mylie and my niece and nephews
-handmade cards and artwork by the kiddies
-Christmas eve communion service at church
-Hello Kitty water dispenser
-one of my bestest friends coming to town unexpectedly!
-Paris decor suitcases
-skype and technology
-a surprise gift from a dear friend with a beanie, 3 homemade jars of jam, and a vanilla candle and earplugs galore! :)
-thoughtful cards and gifts
-my pink piggie mini pillow pet from Bunny <3
-food in my belly and a place to rest my head at night
-medication and access to medical attention when needed
-LOVE
-amazing family and friends
-photos!
-the gift of breath this morning and the promise of a new year
-the power of praying and being blessed to be asked to pray for people who are in my sphere (ANY TIME YOU NEED IT I WILL BE THERE FOR YOU!) even if I don't know them very well.
-a good margarita ;)
-a new snuggie!
-my delicious electric blanket
And so much more. God is so good to me.
I was thinking earlier about the birth of Jesus. Forget about the presents and the hoopla of Santa and gifts....
Our SAVIOR was born on Christmas. If Mary would not have been obedient, if she hadn't endured the scorn and disbelief at the Holy, immaculate conception birth.... if Joseph would not have listened to the angel of the Lord and married her....
would Jesus have been born?
So I am thankful, on this Christmas day, for Joseph and Mary for being open to the voice of the very same God we are in love with today. I pray my heart will be open like that all of the time. Not just when it is convenient for me.
Dear Jesus,
Happy Birthday! Thank you for your birth, your life, and your death on the cross for all of us. I am so in awe everyday that you chose me to love you. Thank you that although this year has been so hard, you have been more then faithful in all circumstances. You triumph sickness, depression, hardship, poverty, anger, and a host of other things all over this fallen world. I love you so much and I pray you would fill me new everyday. Pour into me so that I might pour always into others. You are my everything and I trust you.
Love,
Your Girl
Friday, December 23, 2011
Christmas
Merry Christmas!
Life is continually chaotic for those of us with illness and chronic conditions and the holidays tend to take on the same manic pace as it does for "normals." The difference (for me at least) is that it isn't the shopping that did me in, it's the daily whatevers (which already takes quite the effort) combined with the weather changes and the constant music and extra pressure to socialize and be upbeat for Christmas.
Every year I tell myself that I am going to watch numerous Christmas movies and listen to Christmas jams, and I usually don't. In the past I was far too busy working 50+ week and super involved in church activities and things going on with "my" kids. This year I actually did watch some movies and listen to the tunes and you know what? It actually does help fuel the holiday spirit.
My favorite holiday movies are A Very Brady Christmas, A Mom For Christmas, and A Charlie Brown Christmas. This year I watched a delightful movie called 12 Dates of Christmas ( How neat to learn that my friend's friend actually wrote it!) which I loved! Anything with going back in time has me enraptured. There is nothing to expand on here, I just thought it would be fun to mention. ;)
I always get into a deep reflective state at this time of the year. It's almost time to bid farewell to 2011. I say this every single year, but I swear this year really does feel like it blasted through. It was so full of strife, and darkness, and pain. It was a battle to get through, yet here I sit, once again amazed at how very faithful my God is. I'm still musing on everything that happened and even though it did not feel good at all during the time, this year HAS been very full of blessings. So many I can't even count. I'll write more when my thoughts are gathered.
I am in a tornado of a flare, which hit about 3 days ago. This time it is nausea, dizziness, ear aches again, and severe fatigue. Hoping that it goes away so I can make it to church tomorrow evening. Fingers crossed!
So for now I wish you each a very merry Christmas.
Be blessed!
Life is continually chaotic for those of us with illness and chronic conditions and the holidays tend to take on the same manic pace as it does for "normals." The difference (for me at least) is that it isn't the shopping that did me in, it's the daily whatevers (which already takes quite the effort) combined with the weather changes and the constant music and extra pressure to socialize and be upbeat for Christmas.
Every year I tell myself that I am going to watch numerous Christmas movies and listen to Christmas jams, and I usually don't. In the past I was far too busy working 50+ week and super involved in church activities and things going on with "my" kids. This year I actually did watch some movies and listen to the tunes and you know what? It actually does help fuel the holiday spirit.
My favorite holiday movies are A Very Brady Christmas, A Mom For Christmas, and A Charlie Brown Christmas. This year I watched a delightful movie called 12 Dates of Christmas ( How neat to learn that my friend's friend actually wrote it!) which I loved! Anything with going back in time has me enraptured. There is nothing to expand on here, I just thought it would be fun to mention. ;)
I always get into a deep reflective state at this time of the year. It's almost time to bid farewell to 2011. I say this every single year, but I swear this year really does feel like it blasted through. It was so full of strife, and darkness, and pain. It was a battle to get through, yet here I sit, once again amazed at how very faithful my God is. I'm still musing on everything that happened and even though it did not feel good at all during the time, this year HAS been very full of blessings. So many I can't even count. I'll write more when my thoughts are gathered.
I am in a tornado of a flare, which hit about 3 days ago. This time it is nausea, dizziness, ear aches again, and severe fatigue. Hoping that it goes away so I can make it to church tomorrow evening. Fingers crossed!
So for now I wish you each a very merry Christmas.
Be blessed!
Friday, December 16, 2011
There had been no trauma to that area so it was a complete mystery! I figured it was a rash or something, and after talking with some trusted friends they had me convinced I should maybe see a doctor. My blood sugar was also in diabetes range again so that was another thing to be concerned about. We decided to go and get it checked out.
After a long wait the doctor came in. He was in the room all of 15 seconds when he informed me that I was too young to be on all of the medications I am on. He told me he would recommend me getting off ALL of my medications and starting from scratch.
Um. Okay. Because I did not just go through 2 years of HELL trying to figure out what was going on and why my body was failing me with one infection after another. It was as if I'd somehow jumped into a time machine and was starting back at square one with no one to believe me and another doctor who dismissed me.
He was very patronizing. He said, "well you may have Fibromyalgia but that is a disorder caused by depression where you don't get enough sleep so your muscles don't repair."
Wrong.
Those are elements that come along with this disease, but that is NOT what Fibromyalgia is. There's no easy way to describe it. People see a dumb Lyrica commercial and think they have it figured out. "It's nerves right?" Well, yes, but it is also so much more. It is a breakdown of your entire body and mind. It has no prejudice. It will wipe out your memory, fog your brain, render you unable to stand up for longer then 3 minutes, make you dizzy, allow your poor immune system to catch any old thing, and don't even get me started on the tired. And those are just a few of the things that go wrong with this neuro immune disorder.
Doctor patronizing looked at the dotted blood bruise on my leg and told me that I must have scratched myself during sleep.
Right.
I can barely graze my skin due to the pain and I'm supposed to believe I dragged my nails over it. No way, not possible. It's far too sensitive and if I had been sleeping and scratched, I would have definitely woken up. The pain is that deep.
He told me that I am too young to claim all of these disabilities for the rest of my life. As if I have a choice. As if I want to be disabled. As if I chose this. He said to me, "I can tell by talking with you that you are very bright." Then he left.
I handled it well. No flying tantrum. No anger. Just acceptance. The only reason I could is because I already have gone down this road. I've seen numerous doctors who couldn't diagnose me, who refused to take me seriously, who belittled me. I thought of my Fibro sisters all over the world, and I held my head up high.
It wasn't until I got home that I broke down.
I thought about how the doctor had told me I was very bright but he didn't think I should say I had Fibromyalgia. Does that insinuate that people who are sick, who have Fibro are not bright?
No.
It means people are uneducated about it. It means that we need to work harder to spread the word about it. So many precious people have this disease. So many people struggle for years to get a diagnosis and to find a doctor who will work with them and their specifically tailored ailments. I remembered through a foggy memory ALL of the emergency rooms and appointments and injections and treatments and questions I had when this all started in 2009. ALL of 2010 was spent in hospitals and at clinics. It actually started in 2007, but 2009 is when I took the dip that sent me sliding into the no going back zone. The sick that I never fully recovered from. I thought about how a cocky young doctor could read all the textbooks he wanted, but he wasn't the one who bled from strange places and woke up to strange bruises, and he wasn't the one who had to fight to be heard.
I sobbed for 3 hours. Part of it was the emergency room, and part of it was other stuff. It all blended together and I had a good, hearty cry.
Yesterday I slept in late and when I woke up I felt sort of sluggish. Since that is common with Fibro I just took a shower and got dressed. Then it hit. I had diarrhea and I started throwing up at the same time. 4x in the wastebasket. I was sweating and had hot flashes.... just like I used to. It's been awhile since I had a vomiting attack and a hot flash attack. When it was over I felt so sick. Still I allowed myself to go to church. I knew it would be grand for the mental aspect of things. And it was. The Lord confirmed some things He has been laying on my heart. Specific things that only He has spoken over my life and my heart.
I went home and could not get to sleep last night for anything. Not even after 2 melatonin. Finally around 4am I fell into a restless slumber. I woke up at 7:15am and could not get back to sleep so I read Kisses From Katie, and I remembered....
I remembered how much I love the Philippines. I remembered how much I long to be there. I remembered that there are dreams inside of my heart that the Lord has deposited in there. I remembered how it felt to be on that soil, how much it felt like home to me, and how I sobbed when I had to leave it.... but I was so sure I'd be back soon.
It has been almost 3 years since I was there and I miss it so much. I miss the people, I miss the land, I miss seeing the hand of God move among His people there. It is so very beautiful.
While reading Katie's tale I also started to think a lot about how much I miss "my" kids. I am so grateful that Abba allowed me to be a "mama" to such amazing kids and teenagers. I love each of those precious children so much and I miss the days we had together- laughing and loving each other. It truly was the best of times. I look at photos of that time in my life and my eyes carry a sparkle that can be found only by being obedient to the Lord and working for His kingdom. Many people told me I was wasting my life and that I should get a "real" job. They warned me that I would need social security, that I should do something else. It used to bug me. My security is not in money or in the government or in a job. ALL of those things will fade. The only thing that will last is Jesus and what He has done through my life. I have had many jobs. From the moment I was 16, I worked my butt off. I have had the experience of being a bank teller, a fast food member, a manager a few times, and a myriad of other job titles, and I can honestly say that none of those occupations did for my soul what being a spiritual mama did.
I thrived. I laughed. I loved. I was in my element. Those kids were and still are my world and I learned more from them in 6 years then I ever have in any classroom or in any book.
This was my #1 verse to go to during that beautiful season:
Be shepherds of God’s flock that is under your care, watching over them—not because you must, but because you are willing, as God wants you to be; not pursuing dishonest gain, but eager to serve; not lording it over those entrusted to you, but being examples to the flock.
1 Peter 5:2-3
I have had a lovely, sensational life. The God of the universe has loved me, continued to sweetly break me in, has given me his heartbeat for people, and has brought my dreams into fruition. He is good. He is bigger then a doctor. He is bigger then any disability, and He is bigger then my own mind.
I WILL go back to the Philippines. I will work with kids again.
How can I say that?
I am sick.
I can't handle sounds.
I can't be around crowds.
I can't....
but He has given me this heart and that is what it beats faster for.
To go to the nations.
To live a life not constricted by material possession.
To love children.
To pray.
To bless others.
So I reject that word. I was told I could never work with kids again. I was told I had the back of a 65 year old woman.
No.
No.
No.
My God is able.
My God is faithful.
My God is healer.
I can't...
but He can,
and that is beautiful to a soul lodged in darkness.
Delight yourself in the LORD and he will give you the desires of your heart.
Psalm 37:4
After a long wait the doctor came in. He was in the room all of 15 seconds when he informed me that I was too young to be on all of the medications I am on. He told me he would recommend me getting off ALL of my medications and starting from scratch.
Um. Okay. Because I did not just go through 2 years of HELL trying to figure out what was going on and why my body was failing me with one infection after another. It was as if I'd somehow jumped into a time machine and was starting back at square one with no one to believe me and another doctor who dismissed me.
He was very patronizing. He said, "well you may have Fibromyalgia but that is a disorder caused by depression where you don't get enough sleep so your muscles don't repair."
Wrong.
Those are elements that come along with this disease, but that is NOT what Fibromyalgia is. There's no easy way to describe it. People see a dumb Lyrica commercial and think they have it figured out. "It's nerves right?" Well, yes, but it is also so much more. It is a breakdown of your entire body and mind. It has no prejudice. It will wipe out your memory, fog your brain, render you unable to stand up for longer then 3 minutes, make you dizzy, allow your poor immune system to catch any old thing, and don't even get me started on the tired. And those are just a few of the things that go wrong with this neuro immune disorder.
Doctor patronizing looked at the dotted blood bruise on my leg and told me that I must have scratched myself during sleep.
Right.
I can barely graze my skin due to the pain and I'm supposed to believe I dragged my nails over it. No way, not possible. It's far too sensitive and if I had been sleeping and scratched, I would have definitely woken up. The pain is that deep.
He told me that I am too young to claim all of these disabilities for the rest of my life. As if I have a choice. As if I want to be disabled. As if I chose this. He said to me, "I can tell by talking with you that you are very bright." Then he left.
I handled it well. No flying tantrum. No anger. Just acceptance. The only reason I could is because I already have gone down this road. I've seen numerous doctors who couldn't diagnose me, who refused to take me seriously, who belittled me. I thought of my Fibro sisters all over the world, and I held my head up high.
It wasn't until I got home that I broke down.
I thought about how the doctor had told me I was very bright but he didn't think I should say I had Fibromyalgia. Does that insinuate that people who are sick, who have Fibro are not bright?
No.
It means people are uneducated about it. It means that we need to work harder to spread the word about it. So many precious people have this disease. So many people struggle for years to get a diagnosis and to find a doctor who will work with them and their specifically tailored ailments. I remembered through a foggy memory ALL of the emergency rooms and appointments and injections and treatments and questions I had when this all started in 2009. ALL of 2010 was spent in hospitals and at clinics. It actually started in 2007, but 2009 is when I took the dip that sent me sliding into the no going back zone. The sick that I never fully recovered from. I thought about how a cocky young doctor could read all the textbooks he wanted, but he wasn't the one who bled from strange places and woke up to strange bruises, and he wasn't the one who had to fight to be heard.
I sobbed for 3 hours. Part of it was the emergency room, and part of it was other stuff. It all blended together and I had a good, hearty cry.
Yesterday I slept in late and when I woke up I felt sort of sluggish. Since that is common with Fibro I just took a shower and got dressed. Then it hit. I had diarrhea and I started throwing up at the same time. 4x in the wastebasket. I was sweating and had hot flashes.... just like I used to. It's been awhile since I had a vomiting attack and a hot flash attack. When it was over I felt so sick. Still I allowed myself to go to church. I knew it would be grand for the mental aspect of things. And it was. The Lord confirmed some things He has been laying on my heart. Specific things that only He has spoken over my life and my heart.
I went home and could not get to sleep last night for anything. Not even after 2 melatonin. Finally around 4am I fell into a restless slumber. I woke up at 7:15am and could not get back to sleep so I read Kisses From Katie, and I remembered....
I remembered how much I love the Philippines. I remembered how much I long to be there. I remembered that there are dreams inside of my heart that the Lord has deposited in there. I remembered how it felt to be on that soil, how much it felt like home to me, and how I sobbed when I had to leave it.... but I was so sure I'd be back soon.
It has been almost 3 years since I was there and I miss it so much. I miss the people, I miss the land, I miss seeing the hand of God move among His people there. It is so very beautiful.
While reading Katie's tale I also started to think a lot about how much I miss "my" kids. I am so grateful that Abba allowed me to be a "mama" to such amazing kids and teenagers. I love each of those precious children so much and I miss the days we had together- laughing and loving each other. It truly was the best of times. I look at photos of that time in my life and my eyes carry a sparkle that can be found only by being obedient to the Lord and working for His kingdom. Many people told me I was wasting my life and that I should get a "real" job. They warned me that I would need social security, that I should do something else. It used to bug me. My security is not in money or in the government or in a job. ALL of those things will fade. The only thing that will last is Jesus and what He has done through my life. I have had many jobs. From the moment I was 16, I worked my butt off. I have had the experience of being a bank teller, a fast food member, a manager a few times, and a myriad of other job titles, and I can honestly say that none of those occupations did for my soul what being a spiritual mama did.
I thrived. I laughed. I loved. I was in my element. Those kids were and still are my world and I learned more from them in 6 years then I ever have in any classroom or in any book.
This was my #1 verse to go to during that beautiful season:
Be shepherds of God’s flock that is under your care, watching over them—not because you must, but because you are willing, as God wants you to be; not pursuing dishonest gain, but eager to serve; not lording it over those entrusted to you, but being examples to the flock.
1 Peter 5:2-3
I have had a lovely, sensational life. The God of the universe has loved me, continued to sweetly break me in, has given me his heartbeat for people, and has brought my dreams into fruition. He is good. He is bigger then a doctor. He is bigger then any disability, and He is bigger then my own mind.
I WILL go back to the Philippines. I will work with kids again.
How can I say that?
I am sick.
I can't handle sounds.
I can't be around crowds.
I can't....
but He has given me this heart and that is what it beats faster for.
To go to the nations.
To live a life not constricted by material possession.
To love children.
To pray.
To bless others.
So I reject that word. I was told I could never work with kids again. I was told I had the back of a 65 year old woman.
No.
No.
No.
My God is able.
My God is faithful.
My God is healer.
I can't...
but He can,
and that is beautiful to a soul lodged in darkness.
Delight yourself in the LORD and he will give you the desires of your heart.
Psalm 37:4
Monday, December 12, 2011
Surprise
Last night:
Watched 12 Dates of Christmas on TV.
Today:
I finished The Host (great read!)
Watched most of The Heart of Christmas (the rest will be finished later)
Started reading Snow Day by Billy Coffey
Ate a "Hamburger Helper" meal made from scratch by my mom
Texted with my cousin
Downloaded A Very Brady Christmas to be put on a dvd
And now I am going to watch Altitude with Aaron. My pain is rampant today. My whole entire back is ablaze with a flare. A bit nauseated as well. Still, that is supremely well after this last week. I feel great about that. Oh, and I started eating fruits again. The doctor had told me to stay away from ALL sugar, even fruit (for at least 4 months) but since I haven't been doing so grand on the no sugar aspect of things (it's up and down) I figured I might as well bring back the fruits. ;) I've actually decided to just go back to limiting snacks and watching my portions, like I used to do in Georgia. At that time I walked 4-5 miles everyday and was on the no carbs craze like everyone else. I didn't deprieve myself of chocolate when I wanted, but I limited it to one small cup of hot chocolate from the vending machine each afternoon at work, or a random crescent roll or things like that. I stopped drinking soda completely (I still don't like it except in rare moments when only a sip of it will quench a thirst) and I cut out unnecessary splurges like fries with a meal. It worked for me. I lost 15 lbs. in less then a month, and I was able to sustain that lifestyle for a couple of years before I started messing up. However, since I am getting older and have all of these health issues, I think it would be most beneficial to go back to these basic principles. I know there are some factors working against me (not being able to walk all of the time due to Fibro and osteoarthritis/tendonitis in one ankle), thyroid issues (I am on meds but the dosage is all funky right now until I get a doctor here) and candida is battling to stay strong.... but I know I can do this.
People have told me I am strong. They have spoken that into my life and I haven't always seen it, but today I thought about it and I realized just how very good God has been to me. I know I have said that over and over throughout the duration of this blog, but it is something I never tire of discovering. His goodness has not just been once, or twice, or even seven times. His goodness has been infinite. For every tear, for every trial on this journey, He has equipped me. He has been my strength. He prepared the way to NC and seasoned all parties involved so that although hurts would occur, we all made it through in one piece. I have struggled more then I ever have in my life with these last 2 years.... not just my health. I lost my health, my job, my car, my home, "my" kids, and He still blessed me in abundance. Wow.
But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.
2 Corinthians 12:9
And I've not been giving my body enough credit. Yes, it is tired all of the time. Yes, it is weary and an easy target for anxiety or anger or depression. Yes, it is in pain more often then it is not. Yes, it frustrates me. But this body... MY body.... it IS strong. It has fought back. It has stood up when it has wanted to sit down. It has held little children. It has moved across the united states WHILE having Fibromyalgia. It has kept me going, churning through the days and allowing me to sit here today typing this.
We have so much resilience inside of us. We have so much LIFE.
Thank you, sweet precious Jesus.
One more day...
and somehow that is enough.
Watched 12 Dates of Christmas on TV.
Today:
I finished The Host (great read!)
Watched most of The Heart of Christmas (the rest will be finished later)
Started reading Snow Day by Billy Coffey
Ate a "Hamburger Helper" meal made from scratch by my mom
Texted with my cousin
Downloaded A Very Brady Christmas to be put on a dvd
And now I am going to watch Altitude with Aaron. My pain is rampant today. My whole entire back is ablaze with a flare. A bit nauseated as well. Still, that is supremely well after this last week. I feel great about that. Oh, and I started eating fruits again. The doctor had told me to stay away from ALL sugar, even fruit (for at least 4 months) but since I haven't been doing so grand on the no sugar aspect of things (it's up and down) I figured I might as well bring back the fruits. ;) I've actually decided to just go back to limiting snacks and watching my portions, like I used to do in Georgia. At that time I walked 4-5 miles everyday and was on the no carbs craze like everyone else. I didn't deprieve myself of chocolate when I wanted, but I limited it to one small cup of hot chocolate from the vending machine each afternoon at work, or a random crescent roll or things like that. I stopped drinking soda completely (I still don't like it except in rare moments when only a sip of it will quench a thirst) and I cut out unnecessary splurges like fries with a meal. It worked for me. I lost 15 lbs. in less then a month, and I was able to sustain that lifestyle for a couple of years before I started messing up. However, since I am getting older and have all of these health issues, I think it would be most beneficial to go back to these basic principles. I know there are some factors working against me (not being able to walk all of the time due to Fibro and osteoarthritis/tendonitis in one ankle), thyroid issues (I am on meds but the dosage is all funky right now until I get a doctor here) and candida is battling to stay strong.... but I know I can do this.
People have told me I am strong. They have spoken that into my life and I haven't always seen it, but today I thought about it and I realized just how very good God has been to me. I know I have said that over and over throughout the duration of this blog, but it is something I never tire of discovering. His goodness has not just been once, or twice, or even seven times. His goodness has been infinite. For every tear, for every trial on this journey, He has equipped me. He has been my strength. He prepared the way to NC and seasoned all parties involved so that although hurts would occur, we all made it through in one piece. I have struggled more then I ever have in my life with these last 2 years.... not just my health. I lost my health, my job, my car, my home, "my" kids, and He still blessed me in abundance. Wow.
But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.
2 Corinthians 12:9
And I've not been giving my body enough credit. Yes, it is tired all of the time. Yes, it is weary and an easy target for anxiety or anger or depression. Yes, it is in pain more often then it is not. Yes, it frustrates me. But this body... MY body.... it IS strong. It has fought back. It has stood up when it has wanted to sit down. It has held little children. It has moved across the united states WHILE having Fibromyalgia. It has kept me going, churning through the days and allowing me to sit here today typing this.
We have so much resilience inside of us. We have so much LIFE.
Thank you, sweet precious Jesus.
One more day...
and somehow that is enough.
Sunday, December 11, 2011
A Great Week
I knew it was going to take awhile to get that sliver of equilibrium restored after the stress and chaos of the move across the states. It has been near 4 months since we packed the U-Haul and trekked the miles and it has been a bitter struggle to keep my head above the water, so to speak.
My body has betrayed me time and time again. Some of that betrayal my own fault as I pushed beyond what Fibro would allow and as I ignored boundaries that would inevitably make me feel better.
Like just now, I dropped the laptop and my hands are not cooperating with me. My brain is wrapped in thick fog and I have to focus extra hard to type these words out.
Flare.
I should be used to it by now. It's been 2 years of this up, down, side, back, forward, back again dance. It is dizzying (literally) and terrifying and frustrating....
and I am angry about all of that, most especially on days like today where I feel it so severely, but I am also elated somewhere deep down.
Elated?
Yes.
These 2 weeks alone I have been able to:
-go to my Uncle's place and hang out for a few hours
- Go get applications for medicaid and food stamps, apply for SSI, go Christmas shopping with my mom (shopping is extremely difficult for me, particularly when the motorized carts lose battery and I am left to walk the mill of a store.... usually Target. ;) And this was all in one day! PROGRESS.
-put up our Christmas tree and decorations with my family
-go to social services and have my interview (no easy feat since chatter and walking take a lot out of this physical body)for food stamps. I was approved for emergency status and have already received my card in the mail. Thank you Jesus!
-have a phone interview for SSI for OVER AN HOUR, and then go to the library, hang out at a bookstore like I used to, and go to church. Again, sounds simple but for Fibro, it is a huge victory. Conversation, noise, and lights are all depleting the body of energy and sucking away the ability to function in general. I sat with 2 ladies I met awhile back and one of them invited me to serve at a soup kitchen. This enthralls me because I miss serving SO much and I am itchy for fellowship here, but I know this is going to be a baby steps thing. If I feel able I can serve in limited capacity, seeing as how I cannot stand for longer then a few minutes and the interacting is going to be considerable. I am willing to try, and I am going to attempt not to beat myself up too much if my body is not ready for that yet. I am so happy I was able to make church and that I got to chat with people.
-go out the very next day to a movie by myself, which I have always loved so much. I did not use earplugs for the first time in a very long time. It was actually 10 minutes until the movie until I noticed. Had to cover my ears during the motorcycle scene, but that's still amazing! Driving myself places with ease now, when before it was entirely overwhelming and took ALL of my focus. I could not have the stereo on or people talking. It is still difficult at night or when others are in the car with me, and I feel this pressure to hurry up when I am out by myself.... sort of anticipating the flare and wanting to beat it so I don't have to call someone at home and have them pick me up if I cannot handle the drive home, but I AM DRIVING again. This has done wonders for self-esteem and feeling like I CAN do things independently. After all of this I went home and skyped with Mylie for a long time. Got to read her a couple of books and play games.
-the very next day going to the library again, and hanging out at the bookstore. This gives me a semblance of having a life. At the library I carried my own stack of books (something we take for granted in a healthy host, but what becomes a huge feat when your wrists and arms feel like they are being stabbed repeatedly by tiny ice picks). I saw so many gorgeous colors in the leaves and trees around me as I drive around. The stereo was going and I thrived. After those 2 tasks I even went to to the grocery store and WALKED the length of it as I got groceries. I didn't get very much and nothing heavy. Just fruits, frozen pizzas, eggnog, and simple things I knew I would be able to lift. My bad ankle started to throb immediately and I was limping, but I did it. And I did it while talking on the phone. I also was able to return a few phone calls. That is major since talking on the phone was always a horrendous experience these last 2 years. It's getting easier. Last night I chatted with my best friend and then with my auntie and had the privilege of praying over her.
It may not sound like much but all of those things are amazing, amazing victories for the Fibro patient. Yesterday I skipped all of my medications except for thyroid and acid reflux. I wanted to give my body a break so I took 10 charcoal caps twice during the course of the day to clear out toxins.
I was flying high and despite some massive aches and pains,and of course the fatigue, my body has been allowing me to function a bit better. It's sort of hard to truly describe unless you are going through your own chronic conditions. All of the problems are still there, and there are "penalties" for whatever you choose to do...
case in point, I am now a clumsy, easy to snap bundle of extreme exhaustion and overwhelmed with noise and anything that affects the sensory spots. My wrists and fingers implore me to stop typing, for which I shall very shortly...
However, I am now hopeful again. I had high aspirations to maybe take an online class at the community college next semester, but have since decided to wait. I am not ready for a commitment to anything just yet and would crumble to bits if I push myself even harder then I already do. Someone asked me once, "do you ever just try to push through and deal with it?" I was highly offended and my ego puffed up like a balloon. I didn't say anything but I should have said: Yes, I push through every single day. I push through as soon as my eyes pop open in the morning and I feel that first blast of fatigue and pain. Pain that has no limits. Pain that may be in the hip or the thighs or wrists or even just in one tiny spot I didn't know had the ability to hurt. I push through when I take a shower, lifting the shampoo and conditioner, shaving my legs, soaping off. I push through when I have every conversation, when I drive a car, when I do things like have a 40 minute phone conversation or put up a Christmas tree.... things I always, always took for granted. I push through when I sit at a dinner table or go to a movie. I push through. I take many medications to balance my intestinal tract, to hopefully kill the candida that takes control and makes me crave only sugar and carbs, to make my thyroid function properly, liver medication, acid reflux, heart medication, so many supplements... the list goes on and on. But I do not have pain medication during the day. I do not have anti-anxiety medication, but for 15 pills a month which has now stopped. I would love pain medication, but doctors are hesitant because they don't want us to be addicted. So silly. The people that need pain medication should have it. Isn't that what it is for? So I would say I push through. I push through even when I feel despair, even when I feel like giving up, even when I just can't take it for one second longer....
I PUSH THROUGH.... and not on my own. I push through because I have a God who is on my team, already pulling my resistant self towards the finish line. I have amazing friends and family. I have THE most magnificent Fibro support group online. I have a Fibro sister/best friend who lives in Alabama. We've yet to meet in person, and I've never even heard her voice, but God has so aligned our hearts and given me one of the most treasured relationships in all of my days. I have a family who with all of the frustrations and daily peeves, is there for me no matter what.... in California, in Texas, in North Carolina, in Georgia.... all over. I have best friends who I have known since I was 12 years old. I was thinking about it when on the phone with Monica last night. I am grateful that I have a girlfriend who I could be myself with at 12 years old and today at 31 years old. I have no doubt that when we are 87 years old, I will be sitting somewhere with the phone pressed against my ear with her voice on the other end. I have insanely sweet fellowship- people who rock my world and show me Jesus.... La'Tees, Theresa, Melinda, Meagan, Lindsey, Ashley, Janelle,
Josh, Jeremy, Nikki, Melis, Camille, Roxanne.... the list could go on. People who inspire me with no idea that they do... all of the survivors & fighters. I have a precious, beautiful child in my life who knows me and loves me and who has forever wrecked me with how much I adore her. I have nieces and nephews, aunties and uncles, cousins who are my best friends... all whom have inspired me and who I love so much. I have a mom and a dad who go above and beyond, and a best friend who has stayed beside me through every mood swing and every struggle (thank you Aaron. I have sensational relationships with 4 teenage girls who make me proud every single day. There are so many others I could name, and if you were not mentioned, know this....
YOU are special. You have impacted my life. It doesn't matter if we have known each other for ages or if we are connected by a computer screen. I am so thankful to my God for YOU. I am thankful that your eyes have found this blog. I am thankful that I got to know of you and I am so grateful that God has blessed me through you.
A great deal of time this Fibro fight is lonely. I have felt helpless and hopeless and downright not wanting to exist anymore. But I have also loved harder and God has opened up this heart of mine so wide and so deep. I am in love with creation like never before and I am expectant of the goodness of God.
I am imperfect. I make many mistakes. I fail at times. I get knocked down.
But I get back up.
And I wait for the next great day, because I know it's going to come again.
;)
Lately I have been crushing on:
frozen hot chocolate
books (of course)
Katy Perry's jams
Mad Men
Pinterest
leaves and trees and sky
Proverbs 13:12
Hope deferred makes the heart sick, but a longing fulfilled is a tree of life.
My body has betrayed me time and time again. Some of that betrayal my own fault as I pushed beyond what Fibro would allow and as I ignored boundaries that would inevitably make me feel better.
Like just now, I dropped the laptop and my hands are not cooperating with me. My brain is wrapped in thick fog and I have to focus extra hard to type these words out.
Flare.
I should be used to it by now. It's been 2 years of this up, down, side, back, forward, back again dance. It is dizzying (literally) and terrifying and frustrating....
and I am angry about all of that, most especially on days like today where I feel it so severely, but I am also elated somewhere deep down.
Elated?
Yes.
These 2 weeks alone I have been able to:
-go to my Uncle's place and hang out for a few hours
- Go get applications for medicaid and food stamps, apply for SSI, go Christmas shopping with my mom (shopping is extremely difficult for me, particularly when the motorized carts lose battery and I am left to walk the mill of a store.... usually Target. ;) And this was all in one day! PROGRESS.
-put up our Christmas tree and decorations with my family
-go to social services and have my interview (no easy feat since chatter and walking take a lot out of this physical body)for food stamps. I was approved for emergency status and have already received my card in the mail. Thank you Jesus!
-have a phone interview for SSI for OVER AN HOUR, and then go to the library, hang out at a bookstore like I used to, and go to church. Again, sounds simple but for Fibro, it is a huge victory. Conversation, noise, and lights are all depleting the body of energy and sucking away the ability to function in general. I sat with 2 ladies I met awhile back and one of them invited me to serve at a soup kitchen. This enthralls me because I miss serving SO much and I am itchy for fellowship here, but I know this is going to be a baby steps thing. If I feel able I can serve in limited capacity, seeing as how I cannot stand for longer then a few minutes and the interacting is going to be considerable. I am willing to try, and I am going to attempt not to beat myself up too much if my body is not ready for that yet. I am so happy I was able to make church and that I got to chat with people.
-go out the very next day to a movie by myself, which I have always loved so much. I did not use earplugs for the first time in a very long time. It was actually 10 minutes until the movie until I noticed. Had to cover my ears during the motorcycle scene, but that's still amazing! Driving myself places with ease now, when before it was entirely overwhelming and took ALL of my focus. I could not have the stereo on or people talking. It is still difficult at night or when others are in the car with me, and I feel this pressure to hurry up when I am out by myself.... sort of anticipating the flare and wanting to beat it so I don't have to call someone at home and have them pick me up if I cannot handle the drive home, but I AM DRIVING again. This has done wonders for self-esteem and feeling like I CAN do things independently. After all of this I went home and skyped with Mylie for a long time. Got to read her a couple of books and play games.
-the very next day going to the library again, and hanging out at the bookstore. This gives me a semblance of having a life. At the library I carried my own stack of books (something we take for granted in a healthy host, but what becomes a huge feat when your wrists and arms feel like they are being stabbed repeatedly by tiny ice picks). I saw so many gorgeous colors in the leaves and trees around me as I drive around. The stereo was going and I thrived. After those 2 tasks I even went to to the grocery store and WALKED the length of it as I got groceries. I didn't get very much and nothing heavy. Just fruits, frozen pizzas, eggnog, and simple things I knew I would be able to lift. My bad ankle started to throb immediately and I was limping, but I did it. And I did it while talking on the phone. I also was able to return a few phone calls. That is major since talking on the phone was always a horrendous experience these last 2 years. It's getting easier. Last night I chatted with my best friend and then with my auntie and had the privilege of praying over her.
It may not sound like much but all of those things are amazing, amazing victories for the Fibro patient. Yesterday I skipped all of my medications except for thyroid and acid reflux. I wanted to give my body a break so I took 10 charcoal caps twice during the course of the day to clear out toxins.
I was flying high and despite some massive aches and pains,and of course the fatigue, my body has been allowing me to function a bit better. It's sort of hard to truly describe unless you are going through your own chronic conditions. All of the problems are still there, and there are "penalties" for whatever you choose to do...
case in point, I am now a clumsy, easy to snap bundle of extreme exhaustion and overwhelmed with noise and anything that affects the sensory spots. My wrists and fingers implore me to stop typing, for which I shall very shortly...
However, I am now hopeful again. I had high aspirations to maybe take an online class at the community college next semester, but have since decided to wait. I am not ready for a commitment to anything just yet and would crumble to bits if I push myself even harder then I already do. Someone asked me once, "do you ever just try to push through and deal with it?" I was highly offended and my ego puffed up like a balloon. I didn't say anything but I should have said: Yes, I push through every single day. I push through as soon as my eyes pop open in the morning and I feel that first blast of fatigue and pain. Pain that has no limits. Pain that may be in the hip or the thighs or wrists or even just in one tiny spot I didn't know had the ability to hurt. I push through when I take a shower, lifting the shampoo and conditioner, shaving my legs, soaping off. I push through when I have every conversation, when I drive a car, when I do things like have a 40 minute phone conversation or put up a Christmas tree.... things I always, always took for granted. I push through when I sit at a dinner table or go to a movie. I push through. I take many medications to balance my intestinal tract, to hopefully kill the candida that takes control and makes me crave only sugar and carbs, to make my thyroid function properly, liver medication, acid reflux, heart medication, so many supplements... the list goes on and on. But I do not have pain medication during the day. I do not have anti-anxiety medication, but for 15 pills a month which has now stopped. I would love pain medication, but doctors are hesitant because they don't want us to be addicted. So silly. The people that need pain medication should have it. Isn't that what it is for? So I would say I push through. I push through even when I feel despair, even when I feel like giving up, even when I just can't take it for one second longer....
I PUSH THROUGH.... and not on my own. I push through because I have a God who is on my team, already pulling my resistant self towards the finish line. I have amazing friends and family. I have THE most magnificent Fibro support group online. I have a Fibro sister/best friend who lives in Alabama. We've yet to meet in person, and I've never even heard her voice, but God has so aligned our hearts and given me one of the most treasured relationships in all of my days. I have a family who with all of the frustrations and daily peeves, is there for me no matter what.... in California, in Texas, in North Carolina, in Georgia.... all over. I have best friends who I have known since I was 12 years old. I was thinking about it when on the phone with Monica last night. I am grateful that I have a girlfriend who I could be myself with at 12 years old and today at 31 years old. I have no doubt that when we are 87 years old, I will be sitting somewhere with the phone pressed against my ear with her voice on the other end. I have insanely sweet fellowship- people who rock my world and show me Jesus.... La'Tees, Theresa, Melinda, Meagan, Lindsey, Ashley, Janelle,
Josh, Jeremy, Nikki, Melis, Camille, Roxanne.... the list could go on. People who inspire me with no idea that they do... all of the survivors & fighters. I have a precious, beautiful child in my life who knows me and loves me and who has forever wrecked me with how much I adore her. I have nieces and nephews, aunties and uncles, cousins who are my best friends... all whom have inspired me and who I love so much. I have a mom and a dad who go above and beyond, and a best friend who has stayed beside me through every mood swing and every struggle (thank you Aaron. I have sensational relationships with 4 teenage girls who make me proud every single day. There are so many others I could name, and if you were not mentioned, know this....
YOU are special. You have impacted my life. It doesn't matter if we have known each other for ages or if we are connected by a computer screen. I am so thankful to my God for YOU. I am thankful that your eyes have found this blog. I am thankful that I got to know of you and I am so grateful that God has blessed me through you.
A great deal of time this Fibro fight is lonely. I have felt helpless and hopeless and downright not wanting to exist anymore. But I have also loved harder and God has opened up this heart of mine so wide and so deep. I am in love with creation like never before and I am expectant of the goodness of God.
I am imperfect. I make many mistakes. I fail at times. I get knocked down.
But I get back up.
And I wait for the next great day, because I know it's going to come again.
;)
Lately I have been crushing on:
frozen hot chocolate
books (of course)
Katy Perry's jams
Mad Men
leaves and trees and sky
Proverbs 13:12
Hope deferred makes the heart sick, but a longing fulfilled is a tree of life.
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