I went to put a candle out in my room.
To do so I grabbed another candle and held it upside down on top of the lit candle like I saw Aaron do the other night.
It went out pretty fast.
Light.
Flick.
Dark.
It made me think about people.
How we have dreams and ideas and our imaginations are open so wide as children
the light shines
and then we start having experiences and people who speak hurtful things into our lives
disappointments.
So we start dimming.
So slow we aren't even aware of it until we realize how scary and terrifying it
is to be in the dark.
To be dark.
I love God's daily life lessons in the normal.
Like using one candle to burn out another and realizing how easy it is to
dim when someone wants to put us out
and how so easily we cause others to dim around us without even knowing it.
Wow.
"You are the light of the world. A city on a hill cannot be hidden.
Matthew 5:12
Let's shine brighter.
P.S. walking into a room lit only by candles with the smells serenading throughout the room is one of my favorite things. EVER.
Monday, January 30, 2012
Friday, January 20, 2012
The Little Things
I'm not one who believes in sugar coating. I like things to be truthful and I don't ever want to be one who hides my flaws so I can look like I have it all together.
I don't. ;) Just to clarify.
So last night I had one of my outbursts. I call it that because I have no idea what is going on in my brain when it happens. It is rare but when it happens it is like something short circuits and I am suddenly sweating, so hot, and just so livid. LIVID. Like someone had just murdered my kitten or something (I don't have a kitten). I had a calm afternoon. I was in bed all day, still recovering from the holidays. It's been a beast of a time. More bad days then good again physically. I realize Fibro comes in waves. When it is in this long cycle like it has been since the holidays I start to feel defeated again. So after resting all day, catching up on shows, having some great time with Jesus and feeling the anxiety for the social security evaluation tomorrow melt away as I mediated on Philippians 4:6 Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. I assumed it was all good.
I have been feeling extremely agitated about these upcoming appointments. It's very stressful. I have been to so many doctors over the last 3 years that I have lost count. I have had a few excellent doctors, and many who have ripped my heart out by not taking me seriously or belittling my conditions. I know I have to do this if I want to get SSI or Medicaid. I have been told only 1 in 10 people get approved. There is so much anxiety that comes with appointments. And I don't want advice about it. I don't want to be told it'll work out. I know that. I do know that. Not by my own confidence, but because God has not let me down. Not one time ever. Even when things haven't gone MY way, He has still not let me down. He has simply provided in another way. That is the thought that I settled on yesterday and clung to. He tells us in His word specifically NOT to worry. NOT to be anxious. We read these verses, we repeat them to others, we try to live that way, but oh that flesh of ours! It still wants it's way. Still harps us to take control, steer the ship, doubt, be afraid.
NO.
I debated how I should go. Pajamas? Clothes? People suggested I don't shower, wear my glasses, etc. All great suggestions. I started to feel like I had to act a part.
Then the whisper..... "be you."
And suddenly it was understood and decided. I don't have to "act." I simply need to show up and be authentic. Live my life in that evaluation like I live it everyday. That is the true story. I wear pajamas 95% of the time, I stay home and indoors 90% of the time, I limp when I walk for longer then 5 minutes, hence the use of motorized carts and the handy dandy disabled placard I have been given, I am tired every single minute of every single day, I am sick every single day. It's legit. It's not going anywhere. If I get denied for SSI and/or Medicaid I will appeal. I will trust that God already has avenues of providing medication and help when I need it. I do not need to worry. I do not need to fear. How easy it is to steer that way. How easy it is to wonder and stress.
So after this beautiful revelation from time with Jesus imagine my surprise and humiliation when I suddenly became the angry bear again. It comes on quick and leaves even quicker. For those of you reading who automatically want to start spout off diagnoses for me (bi-polar? depression? rage? ptsd?)- don't. I have been to so many doctors and have had so many tests. I know what is wrong with me and it is called Fibromyalgia.
There have been some who are still, for whatever reason, unwilling to understand that or validate that it is a real, life-changing, all encompassing illness. I have decided I am done with those people in my life.
I am still going through the stages of grief. Acceptance comes in baby sized chunks, and then remixes with denial and bargaining and anger and everything else. I used to force myself... to do what? Everything. To be, to smile, to laugh, to be strong, to not complain, to go to parties, to paste that grin on even when I felt like I wanted to collapse. And then it became impossible to do that so I started to hide away.
Last night after my anger came the apologies, the feelings of intense frustration and helplessness. I felt embarrassed and cruel and so guilty. Luckily I have some very forgiving people in my world. I in no way think it is okay to be "short circuiting" on people. I loathe it almost more then anything in the world (lies still take #1 as my ultimate dislike though).
I cried. I felt it all over again. That feeling of when, when, when will this stop? When will I have a balance? Not the balance I have come to already and lose periodically, not someone else telling me it gets better, not someone patronizing and acting like they have this mastered, but me... Janet.... not feeling so sick every day. Feeling so angry at the loss of a life I don't even want anymore (the days before Fibro).
When it gets like this I mourn the old me. I think about how my eyes used to shine with joy, how people praised my joy (how arrogant is that?! To have wanted that praise in the first place!), how I carted around the kids- toys, crayons, and love filling up that backseat and spreading throughout my whole heart. If I miss anything about my old life it is not the hanging out, it is not even serving in ministries or going to church. What I ache for, miss the most is "my" kids. I miss my ability to be around children. Even now as I type that I start to cry and my heart cracks a little. I miss that. I miss mine. Fibromyalgia has taken a lot from me- my health, my relationships, my job, my dignity, my strength, my control....
"MY."
It has taken so much and in it's place God has still found a way to give me...
sunshine
laughter
love
my breath- I take this for granted. Every single day. I want to wake up every morning being thankful as soon as I pop open sleep encrusted eyes. Another day. Another chance to delight in the fresh air, in the people around me, and in the sweetness of this life God has given me.
hope
encouragement
a different kind of strength that is not physical
vulnerability
compassion
And I am so grateful. It's not about me. My comforts, my plans, my goals. Didn't I ask Him, don't I still ask Him to change me? To make my heart more like His? To take this tender heart He has given me and use it to change the sphere around me? Don't I long for this?
YES.
Unequivocally yes.
I was watching one of my fave shows yesterday and a character said this: "You're not that girl anymore. It's okay if you want to let her go."
Another hit to my heart. Simple lines from a simple show. But it's more. I hold on. I cling to that old me just as much as I bat her hands on the side of the boat so she'll let go.
Even as I blog, as I cry, as I pray, as I vent, as I hurt and ache and scream out.... I know.
I know this is for His glory. I know I am being squeezed so tight I can barely breathe so that I will cease and He will bring me, show me, lead me.
The enemy wants to take me out. He wants to wear me down, get to me to give up, give in, stop pursuing my first love, Jesus.
I say NO. I will not. I will seek harder. I will ask for impossible faith. I will ask for transformation no matter how much it breaks this body because this body is temporal. I will ask for determination because most times it would be so much easier to throw in the towel. I will ask for help. I will be real with people. I will love. I will give. I will not stop. I will seek first His kingdom.
Because to me THAT IS LIFE.
I miss the Philippines. I miss the kids. I miss life as most of us understand it to be lived. Going to weddings, baby showers, parties, church, serving in ministries, shopping at malls, going on trips, being healthy most of all. But I wouldn't want to miss this, because as I am being broken something so much sweeter is being poured over my life, and I pray that I will not hold it so tight in my own fist that I forget to give it away.
I believe a song can change our lives. I love that God uses EVERYTHING to speak to our hearts and music is the universal language. A melody, words strung together in lyrical harmony delighting our eardrums. This song is so lovely and makes my heart fly high, high, high:
"Every time I close my eyes I can touch the colors around me
Suddenly I realize everything I thought was impossible is here
And my heart sings in a world so incredible
And everything burns much brighter
Chorus:
I (I) want to fly (fly) into this beautiful life
I think it'd be nice with you
I want to fly (fly) into this beautiful life I think it'd be nice with you
with you, with you, with you
Fingertips, northern lights, tracing colors right through the sky
Underneath a lullaby I never felt as blissful as I do here
And my heart sings in a world so incredible
And everything shines much brighter
Chorus:
I (I) want to fly (fly) into this beautiful life
I think it'd be nice with you
I want to fly (fly) into this beautiful life I think it'd be nice with you
with you, with you, with you
Set the night on fire if we want to
Hanging out with the stars and the big moon
I very well thank you how do you do
Set the night on fire if we want to
Hanging out with the stars and the big moon
Put them down for a dance with your lasso
I think it'd be nice with you, with you (X4)"
What an amazing journey this continues to be! This very morning I woke up to a box of beautiful roses and a vase. Attached was a simple note, not signed.
This has blessed my life so much more than you know. Thank you anonymous. (; You are yet another example of how very much God enriches my life and your flowers are the arms outstretched to lift me back up today. You are valued.
Dear Jesus,
Thank you for the little things that somehow right all of the wrongs. You continue to amaze me. I pray my eyes would always be open and that my heart would expand further and wider than I thought possible.
<3
I don't. ;) Just to clarify.
So last night I had one of my outbursts. I call it that because I have no idea what is going on in my brain when it happens. It is rare but when it happens it is like something short circuits and I am suddenly sweating, so hot, and just so livid. LIVID. Like someone had just murdered my kitten or something (I don't have a kitten). I had a calm afternoon. I was in bed all day, still recovering from the holidays. It's been a beast of a time. More bad days then good again physically. I realize Fibro comes in waves. When it is in this long cycle like it has been since the holidays I start to feel defeated again. So after resting all day, catching up on shows, having some great time with Jesus and feeling the anxiety for the social security evaluation tomorrow melt away as I mediated on Philippians 4:6 Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. I assumed it was all good.
I have been feeling extremely agitated about these upcoming appointments. It's very stressful. I have been to so many doctors over the last 3 years that I have lost count. I have had a few excellent doctors, and many who have ripped my heart out by not taking me seriously or belittling my conditions. I know I have to do this if I want to get SSI or Medicaid. I have been told only 1 in 10 people get approved. There is so much anxiety that comes with appointments. And I don't want advice about it. I don't want to be told it'll work out. I know that. I do know that. Not by my own confidence, but because God has not let me down. Not one time ever. Even when things haven't gone MY way, He has still not let me down. He has simply provided in another way. That is the thought that I settled on yesterday and clung to. He tells us in His word specifically NOT to worry. NOT to be anxious. We read these verses, we repeat them to others, we try to live that way, but oh that flesh of ours! It still wants it's way. Still harps us to take control, steer the ship, doubt, be afraid.
NO.
I debated how I should go. Pajamas? Clothes? People suggested I don't shower, wear my glasses, etc. All great suggestions. I started to feel like I had to act a part.
Then the whisper..... "be you."
And suddenly it was understood and decided. I don't have to "act." I simply need to show up and be authentic. Live my life in that evaluation like I live it everyday. That is the true story. I wear pajamas 95% of the time, I stay home and indoors 90% of the time, I limp when I walk for longer then 5 minutes, hence the use of motorized carts and the handy dandy disabled placard I have been given, I am tired every single minute of every single day, I am sick every single day. It's legit. It's not going anywhere. If I get denied for SSI and/or Medicaid I will appeal. I will trust that God already has avenues of providing medication and help when I need it. I do not need to worry. I do not need to fear. How easy it is to steer that way. How easy it is to wonder and stress.
So after this beautiful revelation from time with Jesus imagine my surprise and humiliation when I suddenly became the angry bear again. It comes on quick and leaves even quicker. For those of you reading who automatically want to start spout off diagnoses for me (bi-polar? depression? rage? ptsd?)- don't. I have been to so many doctors and have had so many tests. I know what is wrong with me and it is called Fibromyalgia.
There have been some who are still, for whatever reason, unwilling to understand that or validate that it is a real, life-changing, all encompassing illness. I have decided I am done with those people in my life.
I am still going through the stages of grief. Acceptance comes in baby sized chunks, and then remixes with denial and bargaining and anger and everything else. I used to force myself... to do what? Everything. To be, to smile, to laugh, to be strong, to not complain, to go to parties, to paste that grin on even when I felt like I wanted to collapse. And then it became impossible to do that so I started to hide away.
Last night after my anger came the apologies, the feelings of intense frustration and helplessness. I felt embarrassed and cruel and so guilty. Luckily I have some very forgiving people in my world. I in no way think it is okay to be "short circuiting" on people. I loathe it almost more then anything in the world (lies still take #1 as my ultimate dislike though).
I cried. I felt it all over again. That feeling of when, when, when will this stop? When will I have a balance? Not the balance I have come to already and lose periodically, not someone else telling me it gets better, not someone patronizing and acting like they have this mastered, but me... Janet.... not feeling so sick every day. Feeling so angry at the loss of a life I don't even want anymore (the days before Fibro).
When it gets like this I mourn the old me. I think about how my eyes used to shine with joy, how people praised my joy (how arrogant is that?! To have wanted that praise in the first place!), how I carted around the kids- toys, crayons, and love filling up that backseat and spreading throughout my whole heart. If I miss anything about my old life it is not the hanging out, it is not even serving in ministries or going to church. What I ache for, miss the most is "my" kids. I miss my ability to be around children. Even now as I type that I start to cry and my heart cracks a little. I miss that. I miss mine. Fibromyalgia has taken a lot from me- my health, my relationships, my job, my dignity, my strength, my control....
"MY."
It has taken so much and in it's place God has still found a way to give me...
sunshine
laughter
love
my breath- I take this for granted. Every single day. I want to wake up every morning being thankful as soon as I pop open sleep encrusted eyes. Another day. Another chance to delight in the fresh air, in the people around me, and in the sweetness of this life God has given me.
hope
encouragement
a different kind of strength that is not physical
vulnerability
compassion
And I am so grateful. It's not about me. My comforts, my plans, my goals. Didn't I ask Him, don't I still ask Him to change me? To make my heart more like His? To take this tender heart He has given me and use it to change the sphere around me? Don't I long for this?
YES.
Unequivocally yes.
I was watching one of my fave shows yesterday and a character said this: "You're not that girl anymore. It's okay if you want to let her go."
Another hit to my heart. Simple lines from a simple show. But it's more. I hold on. I cling to that old me just as much as I bat her hands on the side of the boat so she'll let go.
Even as I blog, as I cry, as I pray, as I vent, as I hurt and ache and scream out.... I know.
I know this is for His glory. I know I am being squeezed so tight I can barely breathe so that I will cease and He will bring me, show me, lead me.
The enemy wants to take me out. He wants to wear me down, get to me to give up, give in, stop pursuing my first love, Jesus.
I say NO. I will not. I will seek harder. I will ask for impossible faith. I will ask for transformation no matter how much it breaks this body because this body is temporal. I will ask for determination because most times it would be so much easier to throw in the towel. I will ask for help. I will be real with people. I will love. I will give. I will not stop. I will seek first His kingdom.
Because to me THAT IS LIFE.
I miss the Philippines. I miss the kids. I miss life as most of us understand it to be lived. Going to weddings, baby showers, parties, church, serving in ministries, shopping at malls, going on trips, being healthy most of all. But I wouldn't want to miss this, because as I am being broken something so much sweeter is being poured over my life, and I pray that I will not hold it so tight in my own fist that I forget to give it away.
I believe a song can change our lives. I love that God uses EVERYTHING to speak to our hearts and music is the universal language. A melody, words strung together in lyrical harmony delighting our eardrums. This song is so lovely and makes my heart fly high, high, high:
"Every time I close my eyes I can touch the colors around me
Suddenly I realize everything I thought was impossible is here
And my heart sings in a world so incredible
And everything burns much brighter
Chorus:
I (I) want to fly (fly) into this beautiful life
I think it'd be nice with you
I want to fly (fly) into this beautiful life I think it'd be nice with you
with you, with you, with you
Fingertips, northern lights, tracing colors right through the sky
Underneath a lullaby I never felt as blissful as I do here
And my heart sings in a world so incredible
And everything shines much brighter
Chorus:
I (I) want to fly (fly) into this beautiful life
I think it'd be nice with you
I want to fly (fly) into this beautiful life I think it'd be nice with you
with you, with you, with you
Set the night on fire if we want to
Hanging out with the stars and the big moon
I very well thank you how do you do
Set the night on fire if we want to
Hanging out with the stars and the big moon
Put them down for a dance with your lasso
I think it'd be nice with you, with you (X4)"
What an amazing journey this continues to be! This very morning I woke up to a box of beautiful roses and a vase. Attached was a simple note, not signed.
This has blessed my life so much more than you know. Thank you anonymous. (; You are yet another example of how very much God enriches my life and your flowers are the arms outstretched to lift me back up today. You are valued.
Dear Jesus,
Thank you for the little things that somehow right all of the wrongs. You continue to amaze me. I pray my eyes would always be open and that my heart would expand further and wider than I thought possible.
<3
Monday, January 16, 2012
5 months ago today we packed up the trailer and embarked cross country. Wow, how has it already been that long? Mylie has asked me to visit her this year. The other night she asked "Auntie Janet, what day do you think you will come visit me?"
My heart cracks. I want to give her the moon. I would jump on a plane right now, Fibro and all, just because she asked. Is that how God feels? Because when Mylie asks something of me I respond. My heart opens wide, wide, wide and I want to shower her with love and kisses and well, with the whole entire universe.
It makes me think about how much God delights when we call upon Him. Not just when we want something, but because we miss Him soooooo much that we just need to know what day we will see him.
If I do anything this year it will be to see my little. She has already started to "plan" all of our activities. My heart swells so big. I miss you, I miss you, I miss you.
I miss my little snuggler.
My heart cracks. I want to give her the moon. I would jump on a plane right now, Fibro and all, just because she asked. Is that how God feels? Because when Mylie asks something of me I respond. My heart opens wide, wide, wide and I want to shower her with love and kisses and well, with the whole entire universe.
It makes me think about how much God delights when we call upon Him. Not just when we want something, but because we miss Him soooooo much that we just need to know what day we will see him.
If I do anything this year it will be to see my little. She has already started to "plan" all of our activities. My heart swells so big. I miss you, I miss you, I miss you.
I miss my little snuggler.
The Missing
Ecclesiastes 3:1-8
There is a time for everything,
and a season for every activity under the heavens:
a time to be born and a time to die,
a time to plant and a time to uproot,
a time to kill and a time to heal,
a time to tear down and a time to build,
a time to weep and a time to laugh,
a time to mourn and a time to dance,
a time to scatter stones and a time to gather them,
a time to embrace and a time to refrain from embracing,
a time to search and a time to give up,
a time to keep and a time to throw away,
a time to tear and a time to mend,
a time to be silent and a time to speak,
a time to love and a time to hate,
a time for war and a time for peace.
I wait for my season.
There is a time for everything,
and a season for every activity under the heavens:
a time to be born and a time to die,
a time to plant and a time to uproot,
a time to kill and a time to heal,
a time to tear down and a time to build,
a time to weep and a time to laugh,
a time to mourn and a time to dance,
a time to scatter stones and a time to gather them,
a time to embrace and a time to refrain from embracing,
a time to search and a time to give up,
a time to keep and a time to throw away,
a time to tear and a time to mend,
a time to be silent and a time to speak,
a time to love and a time to hate,
a time for war and a time for peace.
I wait for my season.
Fibro & Church
So I accidentally deleted my blogger photos, so now every post that had photos is messed up. Being the orderly person I am (just a little OCD ;) it is driving me bananas. I want to go and fix them all but it would take too much energy and that is something I am truly lacking these past few days especially.
I keep falling asleep. I'm always exhausted, true. It comes with the territory, but this is the deeper kind. The debilitating kind that makes me not want to even move to go to the restroom or watch television or even read a book.
I went to church this morning and it was two and a half hours long. I didn't stand up and dance while worshiping like I normally do. I was too tired and also in a lot of pain. My left side has been feeling particularly bad- that's the bursitis side. Anyway, I sat on the floor a spell while in prayer but mainly I sat in the seat and just engaged that way. It kind of bums me out. I love worship and I love freedom in worship most especially. I love just getting caught up in Jesus and singing with the brethren. It has to be on my list of most favorite things on the planet. So, it was hard to feel so out of it while at church.
As I sat there I was thinking about how taxing it is. How a lot of what I was digging into a few months ago is a part of why I am not committed to a home church here yet (there is one I am considering and will be going to a dinner with the staff event to get to know more about the vision of the church), but it's also because I was incredibly blessed and spoiled with my home church in CA. For any qualms or frustrations, that is a house of people who truly love the Lord. Not to say the other places don't. Of course we all do, I just mean that for me, I truly felt at home there while in worship. People aside, snobbery aside, there is an authentic joy and freedom in worship and prayer that Papa certainly used to enhance in my own life. I feel lucky for that. For it is not something I have to do, it is something I was born to do. To love, sing, dance, declare my love for the God who made the universe. Church to me is not a requirement, some proof to God that I love Him. It's not going every week to collect the popularity tokens and to fit in.
It used to be.
Even when I didn't think it was. It was about Jesus, but it was also about me.
I haven't settled on a church home here yet. It's not because they aren't good. It isn't because the music isn't this or the staff isn't that. I realized today, it's because I'M SICK.
Yeah, you know. I know. We all know Janet has Fibromyalgia and all those other health issues.... what are they? Probably not sure since there are so many. But I think I am starting to really know I am sick.
In 2009 I was sick most of the year but functional.
In 2010 I was very sick and falling apart piece by piece, and trying to find out what was wrong. I was functional but most of it was me trying desperately to still be everyone's everything. No lie. I was still trying to live up to that image. I scaled back but I was still making plans, trying to be the old me, pretending to myself and others that it wasn't that big of a deal.
By 2011 I was headed for rock bottom. I became a hermit for sure. Not by choice. Life became about survival every single day. I was hanging on by a very thin piece of thread.
I'm still a work in progress, but sitting at church today, I understood that a part of my not committing to a church has a lot to do with the fact that I am accepting my limitations a lot more then I used to. People warn me of isolation. People think I am depressed if I say I prefer to be alone or to stay home now. I can see their perspective because I've been healthy. I've lived that side. But having Fibromyalgia.... it isn't a choice I got to make. The choices I get to make now are the ones where I get to decide to take care of myself now. That means that because talking and driving and socializing and expending ANY energy at all will take a toll, I have to be very selective about what I do with my time.
The truth is that realizing how limited I am is hard. This post may sound flip but it's a pretty huge deal to my spirit. I'm an all or nothing woman. If I'm in, I am in. I am committed. I love serving. I love Bible studies. I love friends. But to be involved at a church means that you are connected. You go to events. You chat before and after services. You volunteer together. You meet and pray together. You make it to the services every week. At least that is what it looks like to me. Maybe because that is who I always was. A giver. I don't say that to boast. I know that God gave me a heart to give, to serve and I embrace it. I just don't understand how effective I am with Fibromyalgia. Seriously. I'm grumpy when before I was usually in a joyous mood. I can't move around a lot. My attention span is fleeting. My ability to engage is slim to none. I startle way too easily and about have a heart attack every single time. Blah, blah.
So today I realize I am okay with not having a home church and it sort of shocked me because we're basically taught over and over that without a home church we are sitting ducks for the enemy. That we are back sliding if we are not going to church. That is horse pucky.
Sometimes people cannot make that kind of commitment. I hope and pray that one day I will be spontaneously healed or that my illnesses will be managed to the point where I can make commitments and plans ahead of time, where I can sit and have a a conversation and be fully focused instead of being distracted by the pain. I no longer feel guilty about not going every week.
I am grateful for online sermons, for worship music and the ability to worship in freedom here in America. I am grateful for authentic fellowship which provide accountability and encouragement in the Lord on a daily basis. I am grateful for the Bible and all of the sweet, sweet verses inside of it. I am grateful that prayer is not some premeditated sitting in a chair on the corner for 20 minutes a day, but a living, breathing reality every second of every day.
I love church, but I love the people who carry the Holy Spirit inside of them even more. That building, the one we are so fond of driving up to every weekend and hobnobbing with people in and boasting about as if it's the greatest church ever made..... that's not the church. The church is YOU. The church is me. The church is everywhere we meet, we talk, we share His love, we serve, we pray, we give, we teach, we learn, we grow, we plow through, we call out, we live authentically. That is the church.
I sat in that chair today, fatigue slipping over me and trapping me in my own skin. The mind dulls, all you can think of it melting onto the floor, the bed, anywhere you can close your eyes. One earplug in one ear, a few hellos, nice to meet yous, and a 2.5 hour service. I had to park in a lot nearby and rest awhile before driving home. I talked to God about how that girl is gone. The adventurous one. I started longingly at the roller skating rink across the street and watched a family go in. I thought about the one time I went snowboarding and how I always wanted to go again. I thought about how I used to take care of 5 kids almost every single day ranging from newborn to teenager, and still have energy left at the end of that day to go to a Bible study or corporate prayer or meet a friend for Jamba or Starbucks. I remembered church on Sundays and then 30 of us crowding Pizza Pucks or Chipotle or Red Robin and then hanging out all day until late at night. I remembered a time when I had energy. Now I have limitations and one of those is that I cannot get all involved at a church like I used to.
This is hard for me.
That's how I know Abba is stretching my longsuffering even more. I've not ever been good at longsuffering. Whenever I have visited a church here I hear about all the cool things to get plugged into. It sets my heart up for disappointment. I miss being around kids. That is my heart. Truly. But I can't play like I used to. I should make a disclaimer here- when I say I can't I mean it in the way of I can choose to do something, but it would mean hell on my body and sometimes even my mind. I can lift my godson for a hug but that means my back will ache as if I carried 100 lbs of bricks all day long, I could go to meet a friend, but I will be in reeling pain for days afterward. I could sit at church but then I will have to wait to drive home because my body simply won't cooperate and then I'll flop down and fall asleep for hours when I get home. It's a system of balances and I haven't figured it all out yet.
I have a few simple goals this year. Keeping it light so that I don't set myself up to fail. I do not think Fibro defines me , but it is a huge part of what makes up the definition.
1. Re-read my SVH books.
2. Visit Mylie and the girls/friends/family- this seems incredibly taxing and impossible. The idea of traveling is so overwhelming. This coming from someone who loves airports, airplanes, and travel! I dread the idea of doing this, I can imagine the havoc on the body already, but I promised my girl and so I shall make this happen somehow. Prayers! :)
3. Renew my passport. Somehow having it ready makes it seem more likely that I will go to Paris someday, and hopefully the Philippines, maybe even Africa when Alex and Lucas move there.
See, simple. I was going to try to take a class or something, but I'm nowhere near ready for that yet. I'm still working on applying for SSI and Medicaid. Please pray favor over these things, friends! I have an evaluation on the 21st, a physical and xrays on the 26th. I am quite frustrated at having to go to more doctors, and especially nervous because Fibro cannot be detected in xrays and blood tests. It took a long time and many doctors and many invasive appointments to get all of my diagnoses. I pray, pray, pray His favor over these meetings. That these doctors would see that I am genuine and not someone trying to cheat the system. 20 minutes in an exam room is not going to show my disabilities. It won't show me limping, it won't show me riding in the motorized cart, won't show me being unable to cut my own meat sometimes or lift plates or even a carton of milk. I am not worried God knows my needs, but I do have anxiety about having to deal with more doctors.
I am believing in God for a miracle. Most people get denied the first time they apply for SSI. Will you join me in saying NO to that? If I get SSI I will have some little income and can pay back a debt to someone, I can buy my own supplements, and maybe even save and give some to my parents. And I would automatically get Medicaid, which means I could start seeing a doctor and hopefully be referred to the specialists I need like I had in CA. I am running out of prescription medication. Out of 3 of them already with no refills and no current doctor. So please, please pray I get Medicaid and a doctor soon, soon, soon. It's all in His timing and my trust is being deepened. Each time my flesh takes the plunge into fear-ville it must be rebuked.
This was a tangent of a blog. Have I mentioned I'm tired? ;)
I keep falling asleep. I'm always exhausted, true. It comes with the territory, but this is the deeper kind. The debilitating kind that makes me not want to even move to go to the restroom or watch television or even read a book.
I went to church this morning and it was two and a half hours long. I didn't stand up and dance while worshiping like I normally do. I was too tired and also in a lot of pain. My left side has been feeling particularly bad- that's the bursitis side. Anyway, I sat on the floor a spell while in prayer but mainly I sat in the seat and just engaged that way. It kind of bums me out. I love worship and I love freedom in worship most especially. I love just getting caught up in Jesus and singing with the brethren. It has to be on my list of most favorite things on the planet. So, it was hard to feel so out of it while at church.
As I sat there I was thinking about how taxing it is. How a lot of what I was digging into a few months ago is a part of why I am not committed to a home church here yet (there is one I am considering and will be going to a dinner with the staff event to get to know more about the vision of the church), but it's also because I was incredibly blessed and spoiled with my home church in CA. For any qualms or frustrations, that is a house of people who truly love the Lord. Not to say the other places don't. Of course we all do, I just mean that for me, I truly felt at home there while in worship. People aside, snobbery aside, there is an authentic joy and freedom in worship and prayer that Papa certainly used to enhance in my own life. I feel lucky for that. For it is not something I have to do, it is something I was born to do. To love, sing, dance, declare my love for the God who made the universe. Church to me is not a requirement, some proof to God that I love Him. It's not going every week to collect the popularity tokens and to fit in.
It used to be.
Even when I didn't think it was. It was about Jesus, but it was also about me.
I haven't settled on a church home here yet. It's not because they aren't good. It isn't because the music isn't this or the staff isn't that. I realized today, it's because I'M SICK.
Yeah, you know. I know. We all know Janet has Fibromyalgia and all those other health issues.... what are they? Probably not sure since there are so many. But I think I am starting to really know I am sick.
In 2009 I was sick most of the year but functional.
In 2010 I was very sick and falling apart piece by piece, and trying to find out what was wrong. I was functional but most of it was me trying desperately to still be everyone's everything. No lie. I was still trying to live up to that image. I scaled back but I was still making plans, trying to be the old me, pretending to myself and others that it wasn't that big of a deal.
By 2011 I was headed for rock bottom. I became a hermit for sure. Not by choice. Life became about survival every single day. I was hanging on by a very thin piece of thread.
I'm still a work in progress, but sitting at church today, I understood that a part of my not committing to a church has a lot to do with the fact that I am accepting my limitations a lot more then I used to. People warn me of isolation. People think I am depressed if I say I prefer to be alone or to stay home now. I can see their perspective because I've been healthy. I've lived that side. But having Fibromyalgia.... it isn't a choice I got to make. The choices I get to make now are the ones where I get to decide to take care of myself now. That means that because talking and driving and socializing and expending ANY energy at all will take a toll, I have to be very selective about what I do with my time.
The truth is that realizing how limited I am is hard. This post may sound flip but it's a pretty huge deal to my spirit. I'm an all or nothing woman. If I'm in, I am in. I am committed. I love serving. I love Bible studies. I love friends. But to be involved at a church means that you are connected. You go to events. You chat before and after services. You volunteer together. You meet and pray together. You make it to the services every week. At least that is what it looks like to me. Maybe because that is who I always was. A giver. I don't say that to boast. I know that God gave me a heart to give, to serve and I embrace it. I just don't understand how effective I am with Fibromyalgia. Seriously. I'm grumpy when before I was usually in a joyous mood. I can't move around a lot. My attention span is fleeting. My ability to engage is slim to none. I startle way too easily and about have a heart attack every single time. Blah, blah.
So today I realize I am okay with not having a home church and it sort of shocked me because we're basically taught over and over that without a home church we are sitting ducks for the enemy. That we are back sliding if we are not going to church. That is horse pucky.
Sometimes people cannot make that kind of commitment. I hope and pray that one day I will be spontaneously healed or that my illnesses will be managed to the point where I can make commitments and plans ahead of time, where I can sit and have a a conversation and be fully focused instead of being distracted by the pain. I no longer feel guilty about not going every week.
I am grateful for online sermons, for worship music and the ability to worship in freedom here in America. I am grateful for authentic fellowship which provide accountability and encouragement in the Lord on a daily basis. I am grateful for the Bible and all of the sweet, sweet verses inside of it. I am grateful that prayer is not some premeditated sitting in a chair on the corner for 20 minutes a day, but a living, breathing reality every second of every day.
I love church, but I love the people who carry the Holy Spirit inside of them even more. That building, the one we are so fond of driving up to every weekend and hobnobbing with people in and boasting about as if it's the greatest church ever made..... that's not the church. The church is YOU. The church is me. The church is everywhere we meet, we talk, we share His love, we serve, we pray, we give, we teach, we learn, we grow, we plow through, we call out, we live authentically. That is the church.
I sat in that chair today, fatigue slipping over me and trapping me in my own skin. The mind dulls, all you can think of it melting onto the floor, the bed, anywhere you can close your eyes. One earplug in one ear, a few hellos, nice to meet yous, and a 2.5 hour service. I had to park in a lot nearby and rest awhile before driving home. I talked to God about how that girl is gone. The adventurous one. I started longingly at the roller skating rink across the street and watched a family go in. I thought about the one time I went snowboarding and how I always wanted to go again. I thought about how I used to take care of 5 kids almost every single day ranging from newborn to teenager, and still have energy left at the end of that day to go to a Bible study or corporate prayer or meet a friend for Jamba or Starbucks. I remembered church on Sundays and then 30 of us crowding Pizza Pucks or Chipotle or Red Robin and then hanging out all day until late at night. I remembered a time when I had energy. Now I have limitations and one of those is that I cannot get all involved at a church like I used to.
This is hard for me.
That's how I know Abba is stretching my longsuffering even more. I've not ever been good at longsuffering. Whenever I have visited a church here I hear about all the cool things to get plugged into. It sets my heart up for disappointment. I miss being around kids. That is my heart. Truly. But I can't play like I used to. I should make a disclaimer here- when I say I can't I mean it in the way of I can choose to do something, but it would mean hell on my body and sometimes even my mind. I can lift my godson for a hug but that means my back will ache as if I carried 100 lbs of bricks all day long, I could go to meet a friend, but I will be in reeling pain for days afterward. I could sit at church but then I will have to wait to drive home because my body simply won't cooperate and then I'll flop down and fall asleep for hours when I get home. It's a system of balances and I haven't figured it all out yet.
I have a few simple goals this year. Keeping it light so that I don't set myself up to fail. I do not think Fibro defines me , but it is a huge part of what makes up the definition.
1. Re-read my SVH books.
2. Visit Mylie and the girls/friends/family- this seems incredibly taxing and impossible. The idea of traveling is so overwhelming. This coming from someone who loves airports, airplanes, and travel! I dread the idea of doing this, I can imagine the havoc on the body already, but I promised my girl and so I shall make this happen somehow. Prayers! :)
3. Renew my passport. Somehow having it ready makes it seem more likely that I will go to Paris someday, and hopefully the Philippines, maybe even Africa when Alex and Lucas move there.
See, simple. I was going to try to take a class or something, but I'm nowhere near ready for that yet. I'm still working on applying for SSI and Medicaid. Please pray favor over these things, friends! I have an evaluation on the 21st, a physical and xrays on the 26th. I am quite frustrated at having to go to more doctors, and especially nervous because Fibro cannot be detected in xrays and blood tests. It took a long time and many doctors and many invasive appointments to get all of my diagnoses. I pray, pray, pray His favor over these meetings. That these doctors would see that I am genuine and not someone trying to cheat the system. 20 minutes in an exam room is not going to show my disabilities. It won't show me limping, it won't show me riding in the motorized cart, won't show me being unable to cut my own meat sometimes or lift plates or even a carton of milk. I am not worried God knows my needs, but I do have anxiety about having to deal with more doctors.
I am believing in God for a miracle. Most people get denied the first time they apply for SSI. Will you join me in saying NO to that? If I get SSI I will have some little income and can pay back a debt to someone, I can buy my own supplements, and maybe even save and give some to my parents. And I would automatically get Medicaid, which means I could start seeing a doctor and hopefully be referred to the specialists I need like I had in CA. I am running out of prescription medication. Out of 3 of them already with no refills and no current doctor. So please, please pray I get Medicaid and a doctor soon, soon, soon. It's all in His timing and my trust is being deepened. Each time my flesh takes the plunge into fear-ville it must be rebuked.
This was a tangent of a blog. Have I mentioned I'm tired? ;)
Saturday, January 14, 2012
Mylie's Blog
myliemyliemyliemliemyliem, uylm,yliemyliemyliemylmylimylie
Today is January 14, 2012 and I stumbled upon this. This is from August 11, 2011. Mylie used to write her blog too. I had to post. ;)
Today is January 14, 2012 and I stumbled upon this. This is from August 11, 2011. Mylie used to write her blog too. I had to post. ;)
Thursday, January 5, 2012
Love, Love, Love
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
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
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.
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