You're on a roll... exercise is almost easy... laughter is coming out of you in bursts as if you've just discovered what laughter is.... the "diet" is going okay... could be better, but not having proper funds makes it hard to eat that way... you do your best... tons of greens especially... there is hope... bright... burning... curling it's way from the top of your head and going all the way down to your feet... your heart is leaping with so much excitement... it's been a mere 3 weeks of treatment and finally there's that part of you that feels alive again....
and then you wake up so exhausted and realize you have to move slower. Don't push your body too soon, don't act like you can do 800 things everyday..... don't feel bad when you forget what your saying mid-sentence all of the time... don't be embarrassed that you no longer feel intelligent... every conversation a pressure because you sometimes can't focus, pay attention to what the other person is saying...
just be okay today. Be more than okay. Be a conqueror in the Spirit. You can do this. You can do this.
You are doing this.
And you are working harder then anyone possibly realizes... and it's worth it... this falling out after skipping up... because you did it. You are working hard to manage this illness and NO ONE is going to stop you. No judgement, no lies, no pain, no frustration.
You will get better.
Tuesday, March 29, 2011
I miss the kids I used to interact with everyday. I miss working. I was musing on all of the jobs I have ever had and wrote them down. I realize that although I have always loved children, the years between 2003 to the present has been a season in which God has expanded and truly equipped me with His strength and love for kids. I worked in retail and climbed up corporate ladders so easily but it led to nothing. I was never happy doing that. I had fun in my teens and early 20's @ jobs meeting friends, forming bonds that feel they will be absolutely forever (except for a few they aren't), and wasting money as fast as I made it. The start of Maddison getting her very first job has me reflecting on my own past. I cannot believe these girls are no longer children. They are starting to drive, having jobs, and becoming truly great women. I am proud of them. I remember skinny limbs, braces, Simonne not even having a full set of teeth, and the girls they were at a mere 11 years old. Now they are 15 and 16. I think about what I was doing at 16 and I pray, pray, pray their protection and purity and joy. I am thankful that a couple of them know Jesus and love Him. In 2 short years these babes will graduate high school and move on into the "real world."
Wow.
Pre-fibromyalgia my life was so full. I had the amazing privilege of caring for a little team of terrific children. It actually started back in 2003 when the Lord placed on my heart the desire to bless other families by volunteering to watch children for free on the weekends. A few dedicated friends and I launched our Babysitting Ministry through our weekly church bulletin, we set out clipboards (fancy I know) in the foyer and we're truly blessed as we began to meet some wonderful families through what the Lord had called us to do.
During that time I was also deeply connected with someone who was my mentor at the time and I offered to watch her daughter weekly so that Rach could have some down time. When she had her second daughter it expanded to both little joys, and they became my "Goobs." It was a glorious time. We also had another mentor who had 3 kids at the time and one on the way. We had tons of fun with that clan in Green Valley. Pizza, playtime, and just the joy of kiddies. It was a ball!
I look back and I see how God implanted that desire so deep into my heart back then... way before even, and how He prepped me from 2003-2005 for the ministry He was going to pour onto my lap in great love in 2006. I continued to watch various children from different families, never charging. It was a blessing to bless. Honestly I felt I was blessed more. Is that crazy??? God is pretty fun so I guess that's how it worked out. :)
I was also in school at the time and super involved with the college group through my old church. In 2005 a friend of mine offered me her nanny job for 2 kids in Green Valley. It was just for the summer but it was pretty fun. This time I got paid and I enjoyed that brief season to connect with those 2 children. Eventually it was time to move on. I continued to take classes, and then in late 2005 my best friend Monica offered me a one day a week job taking care of 2 kids in American Canyon. She had been filling in for her sister who had gone back to college.
This begins the most wonderful time of my life thus far. I started taking care of Haley and Georgie on Fridays. They were great kids (still are)from the start. I can still remember my first day- the 3 of us singing "Go Tell It On The Mountain" and Georgie peeing on my jeans when I was changing his diaper. LOL.
By 2006 I was asked to start taking them to daycare and Kindergarden, pick them up, and hang out with them until their mom came home from work. Around that same time I discovered that their neighbor's were actually MY old neighbor's from when I was a child in Daly City. My mom and the mom next door had been best friends! Talk about God's plan.
Soon after the discovery of the next door connection, the mom died. My mom's friend died. :( God told me to offer to take care of their 11 year old daughter, Simonne. I didn't want to charge, but Dan (the father) wouldn't hear of it. He offered me a salary and there we were Haley, Georgie, and Simonne.
Around the same time Haley's classmate (Taylor) needed some daycare as well, so a couple of days a week she came home from school with us. Wednesdays were minimum days so we'd grab lunch and then take the younger girls to their swimming lessons. My friend (at the time)had just had a baby and their daycare plans fell through so I offered to care for the baby as well.
My little army. ;)
We were a well oiled machine. Dentist appointments, doctors appointments, parent days at the middle school, piano lesson, ballet lessons, Christmas breaks, holidays from school, birthday parties, field trips even (where we got lost but eventually found our way), gymnastics, swimming lessons, etc. There they ranged from 2 months to 11 years old. The older helped the younger. They were all like siblings. It was a grand time. Every Friday after school was "Jamba day!" and on rainy days we all got a hot chocolate from Starbucks.
Around that time my parents were moving to NC and so I moved in with the baby's (Mylie) parents. It all ran great. I paid rent at first but after speaking with my other employer's they educated me that since I was providing free daycare from 6am to 6pm every day that I should not be paying anything. Every morning I would leave at 6:45am and return home late in the evening. I worked hard. I worked a lot.
Through that time I was challenged daily. I was encouraged beyond all belief. These kids were amazing. Simonne and I grew very close and often times her friends would join us. Maddison and April quickly became a part of "the crew." They started attending church and youth group with us, and then came to accept Christ as their Savior. They started volunteering in the church nursery until last year when they both got on the cheer squad and life got so busy. Simonne's dad passed away last May and she was forced to move to Burlingame so her older sister could take care of her.
There is another girl who became a part of our little team. Her name is Jenna and I was only able to be a regular part of her life for a short while. I want to say I took her on in 2008. The girls would always tell me they hoped I didn't ever get married because I wouldn't love them anymore. I would laugh because I loved my job so much it wasn't even ike a job at all. There was no way I was going anywhere.
And then I got sick. Slowly. In 2008 I started having migraines and Vertigo. Then chest pains and palpitations. I was exhausted all of the time, but I thought it was because of the insane amount of hours I worked. By that dreadful time in November of 2009 I was told to quit my job by the first doctor who diagnosed the kidney infection and lumbar osteoarthritis. He told me to "find a new profession." At the time I was starting to get really sick and I was so discouraged. I NOW know that was a huge lie set up by the enemy.
I break that off right now in the name of Jesus.
I did stop working outside of the home. I paid heed to my failing health. BUT I never stopped taking care of Mylie. In fact the load increased all the more when her mom left her. I work my tail off and I am capable. I was called behind my back "unfit" because of my fibromyalgia. At first I was hurt. I sobbed. There are a dozen things I could say to retaliate or prove how wrong you are. How much you've lied and how you are still deceiving the people in your life, but I won't. I won't because somewhere underneath all of that YUCK you are acting in right now is the person I once considered my sister. I want you to be better. I want you to stop lying to people. I want you to get healed. I feel sorry for you. I don't know why you are doing what you are doing but the Lord reminds me daily that it is not my battle. It is His. In fact I thank you betrayer, because you have shown me what lie I've partnered with for over a year. I AM CAPABLE. I am not weak, I am made strong in Christ. I am not lazy. I work hard raising a child that is not of my own flesh. I raise her as my own because you don't. You never did. I am getting better. Fibromyalgia is hard. It makes a person want to not fight back, but I am fighting back and kicking some booty doing it! I may not be working in some retail job or in some business office, but I am serving God with all that I do with what He has given me each and everyday.
Today one little boy started to tell me about his 2 missing teeth, and another showed me the charm hanging from his backpack. It gave me GREAT joy! It reminded me how passionate I am about seeing God change the lives of people, but especially of children. It gave me enthusiasm for the next season. It gave me hope. A fresh desire for my calling stirred up in my heart and in my Spirit. The devil has tried for so long to get me to neglect the promises of God, to get me to believe that I will never be able to impact the Kingdom with this illness. Oh, what a lie! A delicious tasty lie made up by the creator of doubt and turmoil.
I will NEVER give up my hope. I will NEVER go against the plans of Jesus. I will NEVER stop sharing my heart with people.
Jesus, thank you for fibromyalgia. Thank you for enemies that bring out the worst in me so that you can make the best in me. Thank you that you make me strong everyday. Thank you that it is your strength alone that I find my will to exist. Thank you for all of the children you have loved on and allowed me to love. Thank you for every ballet recital, every argument with Simonne, every request for help with homework, every everything. Thank you for planting seeds in these lives so that they may plant even more seeds wherever you send them. Thank you for these little marchers of your Kingdom's cause.
God...
God...
God...
I am overwhelmed by you. Your blood covers ALL. You are good, you are beautiful, and you are FAITHFUL!
Thank you for sparking new hope in my heart. I WILL live my life. I am learning boundaries, I am being purged, I am imperfect galore... but YOU, my precious Jesus.... you are blessing me through this disease in ways I never would think possible.
Oh, how I love you.
You have called me to children. To speak life and truth into their spirits. Ignite them, Oh Lord. Power, victory, JOY!
Release your power, Oh sweet savior.
<3
Wow.
Pre-fibromyalgia my life was so full. I had the amazing privilege of caring for a little team of terrific children. It actually started back in 2003 when the Lord placed on my heart the desire to bless other families by volunteering to watch children for free on the weekends. A few dedicated friends and I launched our Babysitting Ministry through our weekly church bulletin, we set out clipboards (fancy I know) in the foyer and we're truly blessed as we began to meet some wonderful families through what the Lord had called us to do.
During that time I was also deeply connected with someone who was my mentor at the time and I offered to watch her daughter weekly so that Rach could have some down time. When she had her second daughter it expanded to both little joys, and they became my "Goobs." It was a glorious time. We also had another mentor who had 3 kids at the time and one on the way. We had tons of fun with that clan in Green Valley. Pizza, playtime, and just the joy of kiddies. It was a ball!
I look back and I see how God implanted that desire so deep into my heart back then... way before even, and how He prepped me from 2003-2005 for the ministry He was going to pour onto my lap in great love in 2006. I continued to watch various children from different families, never charging. It was a blessing to bless. Honestly I felt I was blessed more. Is that crazy??? God is pretty fun so I guess that's how it worked out. :)
I was also in school at the time and super involved with the college group through my old church. In 2005 a friend of mine offered me her nanny job for 2 kids in Green Valley. It was just for the summer but it was pretty fun. This time I got paid and I enjoyed that brief season to connect with those 2 children. Eventually it was time to move on. I continued to take classes, and then in late 2005 my best friend Monica offered me a one day a week job taking care of 2 kids in American Canyon. She had been filling in for her sister who had gone back to college.
This begins the most wonderful time of my life thus far. I started taking care of Haley and Georgie on Fridays. They were great kids (still are)from the start. I can still remember my first day- the 3 of us singing "Go Tell It On The Mountain" and Georgie peeing on my jeans when I was changing his diaper. LOL.
By 2006 I was asked to start taking them to daycare and Kindergarden, pick them up, and hang out with them until their mom came home from work. Around that same time I discovered that their neighbor's were actually MY old neighbor's from when I was a child in Daly City. My mom and the mom next door had been best friends! Talk about God's plan.
Soon after the discovery of the next door connection, the mom died. My mom's friend died. :( God told me to offer to take care of their 11 year old daughter, Simonne. I didn't want to charge, but Dan (the father) wouldn't hear of it. He offered me a salary and there we were Haley, Georgie, and Simonne.
Around the same time Haley's classmate (Taylor) needed some daycare as well, so a couple of days a week she came home from school with us. Wednesdays were minimum days so we'd grab lunch and then take the younger girls to their swimming lessons. My friend (at the time)had just had a baby and their daycare plans fell through so I offered to care for the baby as well.
My little army. ;)
We were a well oiled machine. Dentist appointments, doctors appointments, parent days at the middle school, piano lesson, ballet lessons, Christmas breaks, holidays from school, birthday parties, field trips even (where we got lost but eventually found our way), gymnastics, swimming lessons, etc. There they ranged from 2 months to 11 years old. The older helped the younger. They were all like siblings. It was a grand time. Every Friday after school was "Jamba day!" and on rainy days we all got a hot chocolate from Starbucks.
Around that time my parents were moving to NC and so I moved in with the baby's (Mylie) parents. It all ran great. I paid rent at first but after speaking with my other employer's they educated me that since I was providing free daycare from 6am to 6pm every day that I should not be paying anything. Every morning I would leave at 6:45am and return home late in the evening. I worked hard. I worked a lot.
Through that time I was challenged daily. I was encouraged beyond all belief. These kids were amazing. Simonne and I grew very close and often times her friends would join us. Maddison and April quickly became a part of "the crew." They started attending church and youth group with us, and then came to accept Christ as their Savior. They started volunteering in the church nursery until last year when they both got on the cheer squad and life got so busy. Simonne's dad passed away last May and she was forced to move to Burlingame so her older sister could take care of her.
There is another girl who became a part of our little team. Her name is Jenna and I was only able to be a regular part of her life for a short while. I want to say I took her on in 2008. The girls would always tell me they hoped I didn't ever get married because I wouldn't love them anymore. I would laugh because I loved my job so much it wasn't even ike a job at all. There was no way I was going anywhere.
And then I got sick. Slowly. In 2008 I started having migraines and Vertigo. Then chest pains and palpitations. I was exhausted all of the time, but I thought it was because of the insane amount of hours I worked. By that dreadful time in November of 2009 I was told to quit my job by the first doctor who diagnosed the kidney infection and lumbar osteoarthritis. He told me to "find a new profession." At the time I was starting to get really sick and I was so discouraged. I NOW know that was a huge lie set up by the enemy.
I break that off right now in the name of Jesus.
I did stop working outside of the home. I paid heed to my failing health. BUT I never stopped taking care of Mylie. In fact the load increased all the more when her mom left her. I work my tail off and I am capable. I was called behind my back "unfit" because of my fibromyalgia. At first I was hurt. I sobbed. There are a dozen things I could say to retaliate or prove how wrong you are. How much you've lied and how you are still deceiving the people in your life, but I won't. I won't because somewhere underneath all of that YUCK you are acting in right now is the person I once considered my sister. I want you to be better. I want you to stop lying to people. I want you to get healed. I feel sorry for you. I don't know why you are doing what you are doing but the Lord reminds me daily that it is not my battle. It is His. In fact I thank you betrayer, because you have shown me what lie I've partnered with for over a year. I AM CAPABLE. I am not weak, I am made strong in Christ. I am not lazy. I work hard raising a child that is not of my own flesh. I raise her as my own because you don't. You never did. I am getting better. Fibromyalgia is hard. It makes a person want to not fight back, but I am fighting back and kicking some booty doing it! I may not be working in some retail job or in some business office, but I am serving God with all that I do with what He has given me each and everyday.
Today one little boy started to tell me about his 2 missing teeth, and another showed me the charm hanging from his backpack. It gave me GREAT joy! It reminded me how passionate I am about seeing God change the lives of people, but especially of children. It gave me enthusiasm for the next season. It gave me hope. A fresh desire for my calling stirred up in my heart and in my Spirit. The devil has tried for so long to get me to neglect the promises of God, to get me to believe that I will never be able to impact the Kingdom with this illness. Oh, what a lie! A delicious tasty lie made up by the creator of doubt and turmoil.
I will NEVER give up my hope. I will NEVER go against the plans of Jesus. I will NEVER stop sharing my heart with people.
Jesus, thank you for fibromyalgia. Thank you for enemies that bring out the worst in me so that you can make the best in me. Thank you that you make me strong everyday. Thank you that it is your strength alone that I find my will to exist. Thank you for all of the children you have loved on and allowed me to love. Thank you for every ballet recital, every argument with Simonne, every request for help with homework, every everything. Thank you for planting seeds in these lives so that they may plant even more seeds wherever you send them. Thank you for these little marchers of your Kingdom's cause.
God...
God...
God...
I am overwhelmed by you. Your blood covers ALL. You are good, you are beautiful, and you are FAITHFUL!
Thank you for sparking new hope in my heart. I WILL live my life. I am learning boundaries, I am being purged, I am imperfect galore... but YOU, my precious Jesus.... you are blessing me through this disease in ways I never would think possible.
Oh, how I love you.
You have called me to children. To speak life and truth into their spirits. Ignite them, Oh Lord. Power, victory, JOY!
Release your power, Oh sweet savior.
<3
Friday, March 25, 2011
All Over The Place
I feel horrible today.
I cheated last night.
I had waffles... with syrup.
Now I feel like barfing all over this keyboard.
I am also PMSing so that's affecting my ability to function. Extra fatigue, extra mood swings.
BUT....
this week was AMAZING!
After deciding last weekend to forgo the 3 events, I rested. I took care of myself for once (that's some growth there!). So on Monday I had my 3rd physical therapy session. That time I did 5 minutes on the treadmill again (I realize that to a "normal" that is nothing, but to someone with fibro 5 minutes is like 30), my yellow ribbon exercises, a towel scrunch exercise, and a new one on this round thing called Baps (Biomechanical Ankle Platform System) where you put the foot on it and you have to make each side touch the ground. A lot harder then it sounds! Afterwards I had more electrical stimulation.
Tuesday it was just me and Mylie. We decided to go outside around the apartment complex and take pictures of the pretty flowers. I decided we might as well check the mail. That was my mode of exercise for awhile, until my ankle popped and all of the MRI and boot, etc. stuff. Well, we made it to the mailbox and I felt like going on. We walked down the hill and spotted a sign for a trail.
We stepped through the gate and hiked. I mean, we climbed hills, peed outside, the whole works. It was GLORIOUS!
I will say it again... it was GLORIOUS.
We took photos, we followed a mountain up to nowhere but an electrical tower. Headed back down and then around the mountain, looking at the water below, and down the dirt trail until we hit a part of the Benicia State Park. We then headed home up a steeper hill, and hooray we got back quick. It started to sprinkle as we got back onto the main street and we waited underneath a tree until it stopped. Then we walked back home. We did it! Me and my 4 year old best girl walked 2 and a half hours. She complained not once and we just trekked on. It was extremely exhilarating. I haven't walked like that since 2009. :) She was so excited to be out on our "adventure." We had such a blast. When we got home it was nearly 5:30. I got her into a warm tub and I changed into pajamas. My body was sore- oh so sore. The fibro fatigue came down like a heavy, wet blanket and all I could do was lay on my bed, ice pack on the bad ankle, and my Snuggie over me. I was thoroughly exhausted but it was worth it. I had freedom for 2 hours. I felt strong again. Independent. I adore nature and to be immersed in all that color was so cathartic.
The next day I had physical therapy again, so I went. They upped the exercise bike time to 10 minutes, added a weight machine for my ankle. They took the weights off but left the resistance bands on. I did 20 pushes on each leg, and then "tippy toe" pushes 20 times. Next the stretching and yellow ribbon exercises, plus the towel and "Baps," and then 20 minutes of electrical stimulation once more.
I felt good.
Strong.
And when I say I feel good or strong, I mean that loosely. I don't feel good physically in the slightest. No. It affects me in the sense that I feel good mentally. I feel stronger, ready to kick some fibro booty. But today it catches up and I canceled my physical therapy for today. I need some rest. A full day of nothing. No laundry, no to do's, nothing.
Today is for me.
I still have 16 appointments between now and the end of April.
Physical therapy is helping.
Everyday I feel more accepting of my condition, and more at peace with where God has me. I have my moments of pure frustration at being sick, but things are looking up. I wrestle internally. With this sickness it's like constantly re-learning that I am sick. One afternoon I may feel almost normal, and then it hits like a ton of bricks that I am not "normal." That I can't commit to plans, and that I cannot handle social functions.
I berated myself for ages. I considered myself lazy because I no longer worked outside of the home. I considered myself a bad friend because I couldn't go to the functions. Now I am accepting that I am not lazy. I still work my tail off. I DO have a job. I work FOR FREE and I work hard. I guess it's because to me taking care of Mylie has never been a job. It's work for sure, but I love her so much that it's second nature. She's like my own flesh and blood. But I do work. I work around the clock. I don't sit around. I want to and as I stated I am LEARNING to put me as a priority but I am not there just yet. I still wash dishes, do load after load of laundry, find time to clean, etc. I PUSH myself, which is a benefit but it is also my downfall.
It is what landed me in fibroland to begin with.
And I've realized that true friends are the ones who put no pressure on me to be any certain way. True friends have been the ones who have listened, heard, and applied the knowledge that THIS is my life now: taking care of me and figuring out how to manage fibro. There is no pressure to "attend" or "do." Instead I can just BE.
Surprisingly my family have become my closest friends. And then the special group of people who have continued to support and love me even AND especially at this darkest time. My fibro sisters have become my greatest confidantes and pals. I am so thankful to have this online community to share and help one another. It's pretty nuts how it feels like we know each other better then even the people we know in actual, everyday life. It has become necessary to connect with these amazing, brave, strong women. I am so proud to know them!
There are friendships that I've let go of... or perhaps they've let go of me. Either way I am healthier without them. I was betrayed by someone I've known for 15 years. Maybe I lost that friendship even years ago. Maybe that whole time we lived together was fake. Maybe she was always going to hurt me. I'm not sure. There is a loss there. I thought of her as a sister. I thought we were best friends. I watched her hurt people over the years, but somehow I thought I was exempt.
I wasn't.
I am working on not feeling guilty when I say no. I am learning to have boundaries. Actual, tangible boundaries. Not being "everyone's everything" but continuing to plug into the healthy friendships I do have. I am utterly grateful for the few that have stayed by my side. Encouraging me, chastising me, correcting me, pushing me to wellness.
I will be well.
I believe that with all of my heart. I may never be well in body (although I believe I will manage this and move forward) but the Lord has sustained my spirit, my heart. I am well in my soul. That means EVERYTHING when this spiraling disease comes and tries to suck you in, suck you down.
I am praying about what boundaries look like in MY life. I've never been good at erecting them. I love people. I love helping. I've always been readily available.
I get it now that that IS NOT GOOD.
No one should ever be available 100% of the time.
Jesus was teaching me about boundaries before... ever since 2005 I'd say... and I wasn't listening. I was involved with this and that and that and this.... you know the drill. And now, with fibromyalgia, I finally had to pause.
And now?
Now I wait and figure it out. I wait for Jesus to show me the next move. I am in a waiting zone and I both love it and hate it.
"Our problems that seem so overwhelming can be made small in the light of His greatness. That trouble that was making us miserable on Monday, testing us on Tuesday, winding us up on Wednesday, thrashing us on Thursday, frustrating us on Friday, and slaying us on Saturday becomes subjected on Sunday. In light of His greatness, our difficulties become petty, trifling, minute, trivial, paltry, insignificant, and microscopic. He is bigger than our frustration. He is bigger than our struggle. He is bigger than our crisis."
I've given in to worry. Finances are dry. No more donations have come in. My next appointment is fast approaching and I need to get more supplements, the stool kit test, etc. I have this special diet which costs about a billion dollars to actually eat that way. I'm wondering where the funds will come from, but I must remember Luke 12:22-31:
Then Jesus said to his disciples: “Therefore I tell you, do not worry about your life, what you will eat; or about your body, what you will wear. For life is more than food, and the body more than clothes. Consider the ravens: They do not sow or reap, they have no storeroom or barn; yet God feeds them. And how much more valuable you are than birds! Who of you by worrying can add a single hour to your life? Since you cannot do this very little thing, why do you worry about the rest?
“Consider how the wild flowers grow. They do not labor or spin. Yet I tell you, not even Solomon in all his splendor was dressed like one of these. If that is how God clothes the grass of the field, which is here today, and tomorrow is thrown into the fire, how much more will he clothe you—you of little faith! And do not set your heart on what you will eat or drink; do not worry about it. For the pagan world runs after all such things, and your Father knows that you need them. But seek his kingdom, and these things will be given to you as well.
God supplies what I need EVERY single day. It's astounding to me that I know that but I still get a stress headache when I muse about what I am going to eat on any given day and have no funds. He is my provider and He provides. That's all I need know.
I'm a simple woman. Gone is the girl who used to collect magazines and trinkets and Barbie dolls. I gave that up years ago. I like simple. I like my papasan chair- given to me by a dear friend. I love my hundreds of photo albums. I like candles. Having toilet paper. Buying soap or candles. I dream of living in another country- away from the spoils of America. I dream of living "off the grid" like my best friend, Theresa, wants to. I miss the Philippines. I miss the humbleness of worshiping in small buildings- rooms really... sweat pouring, but the Spirit of God so obvious in such a place of humility. There is nothing to boast about but Him. I think of my own church- which I love. I love my Pastor. I love the heartbeat of heaven when we worship. I love the friends I've made there...
but something in me is stirring. I feel a call to simplicity. A higher call. It started in 2007 and slowly, slowly I began to yield to what God was instructing. It's insane how attached we get to "stuff." To possessions. I remember getting rid of my television show box sets. I was addicted to TV. I had shows lined up every single night. No one could interrupt me during them. It was my special time. I remember when Papa was first calling me to get rid of them. It was such a battle. I would literally sweat when I would sell them... little bit by little bit. And the enemy would set me up. I'd go to Target or wherever and there'd be all these television shows on sale. $14.99, $9.99. I'd pick them up, look at their glossy covers and feel the urge to buy them so bad. But God was faithful to me. He commanded, I obeyed, and He equipped me to let go of that addiction. Maybe it sounds silly. People get addicted to drugs, to cigarettes, to relationships. Not me. My addiction was television.
And then when my parents sold our family home I downsized more. Not by much. I just put it all in storage. A big storage. I had hundreds of dolls. I'd collected since I was a girl and they were worth some money. After a year or so I downsized that and moved to a smaller storage. I sold dolls at a doll show. I sold on ebay.
And then I eliminated the storage altogether.
Last summer when I moved once... then again to American Canyon... and then to Glen Cove all within 3 months of each other I had the opportunity to downsize more. Now I have some boxes in the living room- primarily filled with those albums, and framed photos, my cherished books, and a few dolls from childhood. I live simply and I like it. Shall the Lord ever bless me with a home of my own I want it to be so so simple. I will chuck my cell phone and live with a landline only. I will not buy posessions. I cannot stand how much money is wasted in America.
It's super that people can afford things, but it's such a waste to me. After seeing ACTUAL poverty in the Philippines it literally sickens me when people wear $300 jeans (especially if you are a Pastor. Sorry but it's true.)
Get over it.
Realize there are people starving out there. Realize that life is not about your toys. When you die will you take them with you? Do you want to leave a house of crap for your family to have to dig through? I encourage you to go to another country and see how they do their laundry, how the children are so overjoyed by a stuffed animal we'd toss out here. They don't need video games and nick nacks to be happy. They are so excited by our "reject" toys. I will never forget going to that orphanage. I will never forget when we had out community outreach. All those precious children lined up to get a box of juice and 1 toy.
1.
IF I should ever be blessed with children I will not spoil them at Christmas. We'll take a tip from 7th Heaven and give away something of our own. Something that means a lot to us. I will teach them the art of generosity. I do not want to raise my children here in spoiled America.
I'm on a rant I know. Bear with me. I'm not against enjoying life... but enjoy LIFE not stuff.
Buying something is never going to fulfill you the way being with Jesus will fulfill you. Having a vacation home, a boat... Really? Kudos to you for sending $10 or whatever to your sponsor child, but then you go and buy $200 worth of JUNK @ Target and it makes it okay?
No.
No way.
Go on vacation. Spend on experiences. Bless other people. If I were rich I would have a door open every single day where people could come and get money. I am glad to be poor. Is that weird to say? Lord, please never make me rich. I would rather be poor then to ever think I've got it all together because I have money.
This is not to everyone. This is directed ONLY to those whose hearts are FOR their possessions. Its something that really irks my nerve. Probably because I grew up thinking that my possessions were everything.
When I was in the Philippines I was at home. Partially because my roots (half of them anyway) come from there. I am that culture. It is home because my mom and my family are from there, but it is also home because it is so vastly different from here. I feel more at home on that soil then I ever have here.
I am thankful for our freedoms here in America. I am thankful to the men and women soldiers (like my baby brother) who put their lives on the line to defend our country. I am blessed by the lifestyle allowed here, but I am saying I want to live off the map.
I want to have the clothes on my back (okay, okay and my sweaters too. You know I love me some sweaters.) and my Bible. My favorite books. A place to read. Water nearby- maybe a stream or a lake. But just life. Just simplicity. A small community that shares the burdens with one another. Raising one another's children, helping one another.
That sounds delightful.
For example people take it for granted when they have a car. Most people have 2... some even have 3 per household. They are so aghast that I don't have a car anymore. Not by choice obviously. It sucks 800 buckets to not have a car, but that is my point. Spoiled America. Not everyone has a car. Not everyone can afford to eat at restaurants. Not everyone can buy new sweaters when all of their old ones have holes. I still have a debt to pay from 2005. I owe my best friend $400 for a time she helped me with medical bills. I never forget about it. I wonder when and if I will ever have that money. She never asks me about it, but it looms. I want her to know I still remember. I haven't forgot what I owe. I just don't have it. I struggle every week to have enough to eat. Thankfully I have a God who provides or else I would be...
on the street?
I'm not sure, but it seems probable.
Okay enough of my rambling.
I'm in a tired, "thinky" mood. I've got a lot to pray about.
All of my "everywhere" post to say: God is good. He sustains. He binds up. He is faithful.
It was a good week.
I cheated last night.
I had waffles... with syrup.
Now I feel like barfing all over this keyboard.
I am also PMSing so that's affecting my ability to function. Extra fatigue, extra mood swings.
BUT....
this week was AMAZING!
After deciding last weekend to forgo the 3 events, I rested. I took care of myself for once (that's some growth there!). So on Monday I had my 3rd physical therapy session. That time I did 5 minutes on the treadmill again (I realize that to a "normal" that is nothing, but to someone with fibro 5 minutes is like 30), my yellow ribbon exercises, a towel scrunch exercise, and a new one on this round thing called Baps (Biomechanical Ankle Platform System) where you put the foot on it and you have to make each side touch the ground. A lot harder then it sounds! Afterwards I had more electrical stimulation.
Tuesday it was just me and Mylie. We decided to go outside around the apartment complex and take pictures of the pretty flowers. I decided we might as well check the mail. That was my mode of exercise for awhile, until my ankle popped and all of the MRI and boot, etc. stuff. Well, we made it to the mailbox and I felt like going on. We walked down the hill and spotted a sign for a trail.
We stepped through the gate and hiked. I mean, we climbed hills, peed outside, the whole works. It was GLORIOUS!
I will say it again... it was GLORIOUS.
We took photos, we followed a mountain up to nowhere but an electrical tower. Headed back down and then around the mountain, looking at the water below, and down the dirt trail until we hit a part of the Benicia State Park. We then headed home up a steeper hill, and hooray we got back quick. It started to sprinkle as we got back onto the main street and we waited underneath a tree until it stopped. Then we walked back home. We did it! Me and my 4 year old best girl walked 2 and a half hours. She complained not once and we just trekked on. It was extremely exhilarating. I haven't walked like that since 2009. :) She was so excited to be out on our "adventure." We had such a blast. When we got home it was nearly 5:30. I got her into a warm tub and I changed into pajamas. My body was sore- oh so sore. The fibro fatigue came down like a heavy, wet blanket and all I could do was lay on my bed, ice pack on the bad ankle, and my Snuggie over me. I was thoroughly exhausted but it was worth it. I had freedom for 2 hours. I felt strong again. Independent. I adore nature and to be immersed in all that color was so cathartic.
The next day I had physical therapy again, so I went. They upped the exercise bike time to 10 minutes, added a weight machine for my ankle. They took the weights off but left the resistance bands on. I did 20 pushes on each leg, and then "tippy toe" pushes 20 times. Next the stretching and yellow ribbon exercises, plus the towel and "Baps," and then 20 minutes of electrical stimulation once more.
I felt good.
Strong.
And when I say I feel good or strong, I mean that loosely. I don't feel good physically in the slightest. No. It affects me in the sense that I feel good mentally. I feel stronger, ready to kick some fibro booty. But today it catches up and I canceled my physical therapy for today. I need some rest. A full day of nothing. No laundry, no to do's, nothing.
Today is for me.
I still have 16 appointments between now and the end of April.
Physical therapy is helping.
Everyday I feel more accepting of my condition, and more at peace with where God has me. I have my moments of pure frustration at being sick, but things are looking up. I wrestle internally. With this sickness it's like constantly re-learning that I am sick. One afternoon I may feel almost normal, and then it hits like a ton of bricks that I am not "normal." That I can't commit to plans, and that I cannot handle social functions.
I berated myself for ages. I considered myself lazy because I no longer worked outside of the home. I considered myself a bad friend because I couldn't go to the functions. Now I am accepting that I am not lazy. I still work my tail off. I DO have a job. I work FOR FREE and I work hard. I guess it's because to me taking care of Mylie has never been a job. It's work for sure, but I love her so much that it's second nature. She's like my own flesh and blood. But I do work. I work around the clock. I don't sit around. I want to and as I stated I am LEARNING to put me as a priority but I am not there just yet. I still wash dishes, do load after load of laundry, find time to clean, etc. I PUSH myself, which is a benefit but it is also my downfall.
It is what landed me in fibroland to begin with.
And I've realized that true friends are the ones who put no pressure on me to be any certain way. True friends have been the ones who have listened, heard, and applied the knowledge that THIS is my life now: taking care of me and figuring out how to manage fibro. There is no pressure to "attend" or "do." Instead I can just BE.
Surprisingly my family have become my closest friends. And then the special group of people who have continued to support and love me even AND especially at this darkest time. My fibro sisters have become my greatest confidantes and pals. I am so thankful to have this online community to share and help one another. It's pretty nuts how it feels like we know each other better then even the people we know in actual, everyday life. It has become necessary to connect with these amazing, brave, strong women. I am so proud to know them!
There are friendships that I've let go of... or perhaps they've let go of me. Either way I am healthier without them. I was betrayed by someone I've known for 15 years. Maybe I lost that friendship even years ago. Maybe that whole time we lived together was fake. Maybe she was always going to hurt me. I'm not sure. There is a loss there. I thought of her as a sister. I thought we were best friends. I watched her hurt people over the years, but somehow I thought I was exempt.
I wasn't.
I am working on not feeling guilty when I say no. I am learning to have boundaries. Actual, tangible boundaries. Not being "everyone's everything" but continuing to plug into the healthy friendships I do have. I am utterly grateful for the few that have stayed by my side. Encouraging me, chastising me, correcting me, pushing me to wellness.
I will be well.
I believe that with all of my heart. I may never be well in body (although I believe I will manage this and move forward) but the Lord has sustained my spirit, my heart. I am well in my soul. That means EVERYTHING when this spiraling disease comes and tries to suck you in, suck you down.
I am praying about what boundaries look like in MY life. I've never been good at erecting them. I love people. I love helping. I've always been readily available.
I get it now that that IS NOT GOOD.
No one should ever be available 100% of the time.
Jesus was teaching me about boundaries before... ever since 2005 I'd say... and I wasn't listening. I was involved with this and that and that and this.... you know the drill. And now, with fibromyalgia, I finally had to pause.
And now?
Now I wait and figure it out. I wait for Jesus to show me the next move. I am in a waiting zone and I both love it and hate it.
"Our problems that seem so overwhelming can be made small in the light of His greatness. That trouble that was making us miserable on Monday, testing us on Tuesday, winding us up on Wednesday, thrashing us on Thursday, frustrating us on Friday, and slaying us on Saturday becomes subjected on Sunday. In light of His greatness, our difficulties become petty, trifling, minute, trivial, paltry, insignificant, and microscopic. He is bigger than our frustration. He is bigger than our struggle. He is bigger than our crisis."
I've given in to worry. Finances are dry. No more donations have come in. My next appointment is fast approaching and I need to get more supplements, the stool kit test, etc. I have this special diet which costs about a billion dollars to actually eat that way. I'm wondering where the funds will come from, but I must remember Luke 12:22-31:
Then Jesus said to his disciples: “Therefore I tell you, do not worry about your life, what you will eat; or about your body, what you will wear. For life is more than food, and the body more than clothes. Consider the ravens: They do not sow or reap, they have no storeroom or barn; yet God feeds them. And how much more valuable you are than birds! Who of you by worrying can add a single hour to your life? Since you cannot do this very little thing, why do you worry about the rest?
“Consider how the wild flowers grow. They do not labor or spin. Yet I tell you, not even Solomon in all his splendor was dressed like one of these. If that is how God clothes the grass of the field, which is here today, and tomorrow is thrown into the fire, how much more will he clothe you—you of little faith! And do not set your heart on what you will eat or drink; do not worry about it. For the pagan world runs after all such things, and your Father knows that you need them. But seek his kingdom, and these things will be given to you as well.
God supplies what I need EVERY single day. It's astounding to me that I know that but I still get a stress headache when I muse about what I am going to eat on any given day and have no funds. He is my provider and He provides. That's all I need know.
I'm a simple woman. Gone is the girl who used to collect magazines and trinkets and Barbie dolls. I gave that up years ago. I like simple. I like my papasan chair- given to me by a dear friend. I love my hundreds of photo albums. I like candles. Having toilet paper. Buying soap or candles. I dream of living in another country- away from the spoils of America. I dream of living "off the grid" like my best friend, Theresa, wants to. I miss the Philippines. I miss the humbleness of worshiping in small buildings- rooms really... sweat pouring, but the Spirit of God so obvious in such a place of humility. There is nothing to boast about but Him. I think of my own church- which I love. I love my Pastor. I love the heartbeat of heaven when we worship. I love the friends I've made there...
but something in me is stirring. I feel a call to simplicity. A higher call. It started in 2007 and slowly, slowly I began to yield to what God was instructing. It's insane how attached we get to "stuff." To possessions. I remember getting rid of my television show box sets. I was addicted to TV. I had shows lined up every single night. No one could interrupt me during them. It was my special time. I remember when Papa was first calling me to get rid of them. It was such a battle. I would literally sweat when I would sell them... little bit by little bit. And the enemy would set me up. I'd go to Target or wherever and there'd be all these television shows on sale. $14.99, $9.99. I'd pick them up, look at their glossy covers and feel the urge to buy them so bad. But God was faithful to me. He commanded, I obeyed, and He equipped me to let go of that addiction. Maybe it sounds silly. People get addicted to drugs, to cigarettes, to relationships. Not me. My addiction was television.
And then when my parents sold our family home I downsized more. Not by much. I just put it all in storage. A big storage. I had hundreds of dolls. I'd collected since I was a girl and they were worth some money. After a year or so I downsized that and moved to a smaller storage. I sold dolls at a doll show. I sold on ebay.
And then I eliminated the storage altogether.
Last summer when I moved once... then again to American Canyon... and then to Glen Cove all within 3 months of each other I had the opportunity to downsize more. Now I have some boxes in the living room- primarily filled with those albums, and framed photos, my cherished books, and a few dolls from childhood. I live simply and I like it. Shall the Lord ever bless me with a home of my own I want it to be so so simple. I will chuck my cell phone and live with a landline only. I will not buy posessions. I cannot stand how much money is wasted in America.
It's super that people can afford things, but it's such a waste to me. After seeing ACTUAL poverty in the Philippines it literally sickens me when people wear $300 jeans (especially if you are a Pastor. Sorry but it's true.)
Get over it.
Realize there are people starving out there. Realize that life is not about your toys. When you die will you take them with you? Do you want to leave a house of crap for your family to have to dig through? I encourage you to go to another country and see how they do their laundry, how the children are so overjoyed by a stuffed animal we'd toss out here. They don't need video games and nick nacks to be happy. They are so excited by our "reject" toys. I will never forget going to that orphanage. I will never forget when we had out community outreach. All those precious children lined up to get a box of juice and 1 toy.
1.
IF I should ever be blessed with children I will not spoil them at Christmas. We'll take a tip from 7th Heaven and give away something of our own. Something that means a lot to us. I will teach them the art of generosity. I do not want to raise my children here in spoiled America.
I'm on a rant I know. Bear with me. I'm not against enjoying life... but enjoy LIFE not stuff.
Buying something is never going to fulfill you the way being with Jesus will fulfill you. Having a vacation home, a boat... Really? Kudos to you for sending $10 or whatever to your sponsor child, but then you go and buy $200 worth of JUNK @ Target and it makes it okay?
No.
No way.
Go on vacation. Spend on experiences. Bless other people. If I were rich I would have a door open every single day where people could come and get money. I am glad to be poor. Is that weird to say? Lord, please never make me rich. I would rather be poor then to ever think I've got it all together because I have money.
This is not to everyone. This is directed ONLY to those whose hearts are FOR their possessions. Its something that really irks my nerve. Probably because I grew up thinking that my possessions were everything.
When I was in the Philippines I was at home. Partially because my roots (half of them anyway) come from there. I am that culture. It is home because my mom and my family are from there, but it is also home because it is so vastly different from here. I feel more at home on that soil then I ever have here.
I am thankful for our freedoms here in America. I am thankful to the men and women soldiers (like my baby brother) who put their lives on the line to defend our country. I am blessed by the lifestyle allowed here, but I am saying I want to live off the map.
I want to have the clothes on my back (okay, okay and my sweaters too. You know I love me some sweaters.) and my Bible. My favorite books. A place to read. Water nearby- maybe a stream or a lake. But just life. Just simplicity. A small community that shares the burdens with one another. Raising one another's children, helping one another.
That sounds delightful.
For example people take it for granted when they have a car. Most people have 2... some even have 3 per household. They are so aghast that I don't have a car anymore. Not by choice obviously. It sucks 800 buckets to not have a car, but that is my point. Spoiled America. Not everyone has a car. Not everyone can afford to eat at restaurants. Not everyone can buy new sweaters when all of their old ones have holes. I still have a debt to pay from 2005. I owe my best friend $400 for a time she helped me with medical bills. I never forget about it. I wonder when and if I will ever have that money. She never asks me about it, but it looms. I want her to know I still remember. I haven't forgot what I owe. I just don't have it. I struggle every week to have enough to eat. Thankfully I have a God who provides or else I would be...
on the street?
I'm not sure, but it seems probable.
Okay enough of my rambling.
I'm in a tired, "thinky" mood. I've got a lot to pray about.
All of my "everywhere" post to say: God is good. He sustains. He binds up. He is faithful.
It was a good week.
Tuesday, March 22, 2011
So we're not giving up. How could we! Even though on the outside it often looks like things are falling apart on us, on the inside, where God is making new life, not a day goes by without his unfolding grace. These hard times are small potatoes compared to the coming good times, the lavish celebration prepared for us. There's far more here than meets the eye. The things we see now are here today, gone tomorrow. But the things we can't see now will last forever.
2 Corinthians 4:16-18
There are some days where I feel like giving up. A couple of days ago I felt like that Giving up in the sense that I am so tired of this disease that I just want to stop coping with it and let it overtake me. It comes fewer times now. Now that I've started getting treatment and was feeling some slight improvement, but after it came back with more then the usual flare I was really mad. I was pissed actually. I felt so bad that I ate chocolate after almost 2 weeks without. The next day I paid the price.
C
R
A
S
H
I'm feeling good in spirit. The sun is shining outside and I am sitting on my papasan chair, and actually having a peaceful morning. I don't feel good. I am weak in my limbs and I feel like throwing up but I also feel calm again. I don't like when my hopes get raised only to fall when the next flare hits.
I am strong. And if YOU are reading this and you want to attack me, then go ahead. I've decided I'm done with you. You back/front/side stabbed me, you lied about me, and you continue your reign of manipulation. You can spin as many tales as you want but you and I know the truth.
God knows the truth.
I pray that whatever has made you this diabolical will break off of you. That Jesus sweeps over you and that you will repent of what you've done. I feel sorry for you. There must be a lot of hate and hurt in there to make you go so far.
As for me, I'm off to enjoy the sunshine.
2 Corinthians 4:16-18
There are some days where I feel like giving up. A couple of days ago I felt like that Giving up in the sense that I am so tired of this disease that I just want to stop coping with it and let it overtake me. It comes fewer times now. Now that I've started getting treatment and was feeling some slight improvement, but after it came back with more then the usual flare I was really mad. I was pissed actually. I felt so bad that I ate chocolate after almost 2 weeks without. The next day I paid the price.
C
R
A
S
H
I'm feeling good in spirit. The sun is shining outside and I am sitting on my papasan chair, and actually having a peaceful morning. I don't feel good. I am weak in my limbs and I feel like throwing up but I also feel calm again. I don't like when my hopes get raised only to fall when the next flare hits.
I am strong. And if YOU are reading this and you want to attack me, then go ahead. I've decided I'm done with you. You back/front/side stabbed me, you lied about me, and you continue your reign of manipulation. You can spin as many tales as you want but you and I know the truth.
God knows the truth.
I pray that whatever has made you this diabolical will break off of you. That Jesus sweeps over you and that you will repent of what you've done. I feel sorry for you. There must be a lot of hate and hurt in there to make you go so far.
As for me, I'm off to enjoy the sunshine.
Saturday, March 19, 2011
I love the rain pouring down. I wrote that last night too, but today it sounds so darn pleasant. I have the window open and it's this pure, steady stream.
Beautiful.
I made the choice to stay home this morning. I feel proud of that. It wasn't easy. I literally chewed on making that decision for hours. I hate letting people down. I actually DO want to be there for the people I love.
I don't ever want to be a flake. When I give my word it is solid. At least it used to be. Now I get that I don't have to give my word. For awhile, as I figure this out, I get to just stop. That huge flashing STOP sign in my head the other day in prayer... perhaps it meant more then I thought.
I am not a flake.
I live in a "maybe" world. Maybe I can make it. Maybe I'll feel good. Maybe I can talk on the phone today. Maybe I can walk to the mailbox. Maybe I'll make it to church. Maybe I can sit through a movie.
Maybe.
Maybe.
Maybe.
And that's okay!
If anything this illness is teaching me to love myself just a little more, pay attention to my needs a little more,to just relax and let it be.
I struggled so hard against that when I first got sick, and over time it has gotten easier to implement. It's still not easy, but everyday brings me closer to understanding completely that as much as I want to be there for others, I have to be there for myself too.
The world will not fall apart if I am not at an event. The world will not fall apart if I turn off my cell phone. The world will not fall apart if I am not the "perfect" friend. How arrogant of me to act as if I am on demand. Many times it has felt like it over the years and I played that role perfectly. I lived "on demand." How unhealthy! Look where it has led me. So many ailments and the inability to control my response to stress- the blood pressure sky rockets and I get all this anxiety and chest pains. Is it worth it? No way.
Perhaps being a good friend means that I finally establish those boundaries I've always hesitated to erect. Even typing that causes the familiar pang of anxiety in my chest. Why is it so difficult? It feels like I am losing something, which is completely ridiculous because boundaries will be a GREAT thing.
I guess...
I know...
it's because this is more then about erecting boundaries. That is the majority, but a part of setting these boundaries means that I am accepting just a little bit more the reality of my "new" lifestyle. It means I let go a little bit more to the person I was and open up to this me that I am now.
It scares me. It's like a freefall.
How can it be so scary? With fibromyalgia it feels like I am constantly accepting it all over. One day I feel "okay" and so I think maybe it's not that bad. Maybe this last year and a half was a fluke and suddenly I am healthy again! Hope rises and swells.
Then.... CRASH.
Reality comes.
I have hope to be healed.
I am excited by the slight progress in just the week and a half on these supplements.
Yet, I am also scared.
I feel myself letting go in a brand new way. Of people, of ideas, of things I've lived 30 years believing and operating in.
To not be there for others scares me.
To not be there for myself scares me more.
I've neglected myself for too long.
Now it's my turn.
And so here I go...
I am jumping.
Beautiful.
I made the choice to stay home this morning. I feel proud of that. It wasn't easy. I literally chewed on making that decision for hours. I hate letting people down. I actually DO want to be there for the people I love.
I don't ever want to be a flake. When I give my word it is solid. At least it used to be. Now I get that I don't have to give my word. For awhile, as I figure this out, I get to just stop. That huge flashing STOP sign in my head the other day in prayer... perhaps it meant more then I thought.
I am not a flake.
I live in a "maybe" world. Maybe I can make it. Maybe I'll feel good. Maybe I can talk on the phone today. Maybe I can walk to the mailbox. Maybe I'll make it to church. Maybe I can sit through a movie.
Maybe.
Maybe.
Maybe.
And that's okay!
If anything this illness is teaching me to love myself just a little more, pay attention to my needs a little more,to just relax and let it be.
I struggled so hard against that when I first got sick, and over time it has gotten easier to implement. It's still not easy, but everyday brings me closer to understanding completely that as much as I want to be there for others, I have to be there for myself too.
The world will not fall apart if I am not at an event. The world will not fall apart if I turn off my cell phone. The world will not fall apart if I am not the "perfect" friend. How arrogant of me to act as if I am on demand. Many times it has felt like it over the years and I played that role perfectly. I lived "on demand." How unhealthy! Look where it has led me. So many ailments and the inability to control my response to stress- the blood pressure sky rockets and I get all this anxiety and chest pains. Is it worth it? No way.
Perhaps being a good friend means that I finally establish those boundaries I've always hesitated to erect. Even typing that causes the familiar pang of anxiety in my chest. Why is it so difficult? It feels like I am losing something, which is completely ridiculous because boundaries will be a GREAT thing.
I guess...
I know...
it's because this is more then about erecting boundaries. That is the majority, but a part of setting these boundaries means that I am accepting just a little bit more the reality of my "new" lifestyle. It means I let go a little bit more to the person I was and open up to this me that I am now.
It scares me. It's like a freefall.
How can it be so scary? With fibromyalgia it feels like I am constantly accepting it all over. One day I feel "okay" and so I think maybe it's not that bad. Maybe this last year and a half was a fluke and suddenly I am healthy again! Hope rises and swells.
Then.... CRASH.
Reality comes.
I have hope to be healed.
I am excited by the slight progress in just the week and a half on these supplements.
Yet, I am also scared.
I feel myself letting go in a brand new way. Of people, of ideas, of things I've lived 30 years believing and operating in.
To not be there for others scares me.
To not be there for myself scares me more.
I've neglected myself for too long.
Now it's my turn.
And so here I go...
I am jumping.
Friday, March 18, 2011
It's raining.
I love the sound making it's rat-a-tat song on the building as each drop hits it's mark.
I had the chance to rest today.
rest 1 (rst)
n.
1. Cessation of work, exertion, or activity.
2. Peace, ease, or refreshment resulting from sleep or the cessation of an activity.
3. Sleep or quiet relaxation.
4. The repose of death: eternal rest.
5. Relief or freedom from disquiet or disturbance.
6. Mental or emotional tranquillity.
7. Termination or absence of motion.
That's what it says the definition of rest is.
I do not know how to do that.
I enjoy stillness. I enjoy silence. I enjoy times of wonderful, glorious rest in prayer and presence, BUT I do not know how to just BE. I am a do-er. I do. I clean. I help people. I get things done. I was a list person my whole life, until a wonderful weekend with new friends at my brother's wedding and my cervical Cancer growth in 2005 made me SEE that living a list free, simple life is all I actually wanted. And still I worked my tail off, burning energy I did not have on working over 60, sometimes 80 hours a week nannying for a few families. It was brutal, but I pressed on and on and on. I did it because I loved it. I was called to it. Not to overworking of course, but to those families, those children.
And now? Now I am suffering the consequences of a life lived too hard and lifestyle choices that I could have made differently. A better diet, etc. I worked out, I was social, I was the "planner," the go to gal.
I used to miss that woman I was.
I used to cry and be mournful that I could no longer keep up with her.
Now I am at that midway point where I know that I don't want to go backwards, everyday brings new growth, but I am not arrived as of yet. I don't have perfect boundaries... YET. I don't always take care of myself first... YET. I don't understand my illness entirely... YET.
I want to be there, here, everywhere all of the time. I miss being able to order at Jamba Juice without my head spinning, sitting in a car without the motorcycle next to us causing an explosion inside of my head. I want to make it to the baptism, the baby shower, church, the girls' games, the social dinners, the bridal parties.
And still I know I can't and won't go down that road again. I have MUCH anxiety over this coming weekend. There are a few different events- all equally special and important, but I feel like going to any of them will push me over the edge. Going to physical therapy is taking it's toll. I was "fine" yesterday but now the fatigue and pain are back and fiercer then usual with the rain cascading outside.
I have to make a decision. Do I go to these special events and wreak havoc on my body that is already begging me to be still, to stop doing the laundry, to stop moving, to just freaking REST for once? Or do I disappoint (again) the friends who mean so much to me? Which do I sacrifice? I can already tell I'm in the mood of moods. PMS and this flare are making it hard to think clearly. I feel irate and tired and just ready to sleep, sleep, sleep for 10 straight days.
If I go to these events I will come home and be hurting for days, maybe even longer. I will be so fibro-fogged and full of noise and conversation that I will be grouchy and unpleasant. This is the pattern. This is the downfall of my illness. I look fine, I sound fine, and I'm a positive person but there are always repercussions with fibromyalgia.
Is it worth it?
Do I abuse my body or disappoint the people I love? Both are unappealing.
I love the sound making it's rat-a-tat song on the building as each drop hits it's mark.
I had the chance to rest today.
rest 1 (rst)
n.
1. Cessation of work, exertion, or activity.
2. Peace, ease, or refreshment resulting from sleep or the cessation of an activity.
3. Sleep or quiet relaxation.
4. The repose of death: eternal rest.
5. Relief or freedom from disquiet or disturbance.
6. Mental or emotional tranquillity.
7. Termination or absence of motion.
That's what it says the definition of rest is.
I do not know how to do that.
I enjoy stillness. I enjoy silence. I enjoy times of wonderful, glorious rest in prayer and presence, BUT I do not know how to just BE. I am a do-er. I do. I clean. I help people. I get things done. I was a list person my whole life, until a wonderful weekend with new friends at my brother's wedding and my cervical Cancer growth in 2005 made me SEE that living a list free, simple life is all I actually wanted. And still I worked my tail off, burning energy I did not have on working over 60, sometimes 80 hours a week nannying for a few families. It was brutal, but I pressed on and on and on. I did it because I loved it. I was called to it. Not to overworking of course, but to those families, those children.
And now? Now I am suffering the consequences of a life lived too hard and lifestyle choices that I could have made differently. A better diet, etc. I worked out, I was social, I was the "planner," the go to gal.
I used to miss that woman I was.
I used to cry and be mournful that I could no longer keep up with her.
Now I am at that midway point where I know that I don't want to go backwards, everyday brings new growth, but I am not arrived as of yet. I don't have perfect boundaries... YET. I don't always take care of myself first... YET. I don't understand my illness entirely... YET.
I want to be there, here, everywhere all of the time. I miss being able to order at Jamba Juice without my head spinning, sitting in a car without the motorcycle next to us causing an explosion inside of my head. I want to make it to the baptism, the baby shower, church, the girls' games, the social dinners, the bridal parties.
And still I know I can't and won't go down that road again. I have MUCH anxiety over this coming weekend. There are a few different events- all equally special and important, but I feel like going to any of them will push me over the edge. Going to physical therapy is taking it's toll. I was "fine" yesterday but now the fatigue and pain are back and fiercer then usual with the rain cascading outside.
I have to make a decision. Do I go to these special events and wreak havoc on my body that is already begging me to be still, to stop doing the laundry, to stop moving, to just freaking REST for once? Or do I disappoint (again) the friends who mean so much to me? Which do I sacrifice? I can already tell I'm in the mood of moods. PMS and this flare are making it hard to think clearly. I feel irate and tired and just ready to sleep, sleep, sleep for 10 straight days.
If I go to these events I will come home and be hurting for days, maybe even longer. I will be so fibro-fogged and full of noise and conversation that I will be grouchy and unpleasant. This is the pattern. This is the downfall of my illness. I look fine, I sound fine, and I'm a positive person but there are always repercussions with fibromyalgia.
Is it worth it?
Do I abuse my body or disappoint the people I love? Both are unappealing.
Thursday, March 17, 2011
"When you lose yourself you find yourself"
Some people don't like details. Each day we ask and are asked by several people the simple words "How are you doing?" Most give a curt "fine" or the ever cheery "Good! How are you?" Then we go about our business.
Disclaimer: I am not like that. If you ask me how I am doing I will tell and I will give you details because when I ask you how you are, I really want to know. I don't want the trivial. I want to know people. I like to hear their hearts. I like to know the stories behind those eyes or that grin. People are so intricate and our lives are so vast, that if we can look beyond the house and fence, "everything is great" mentality maybe we could actually start being real.
Tonight finds me in a jolly state. This is the first time in a long time that I have actual time to savor the sweetness of being alone. I can throw on this nightshirt catch up on my blog and settle in for a night of relaxation. No major pressing needs holding me hostage.
The last month has been hectic to say the least. My parents were here for a month, there was and is a situation between the parents of the little girl I live with and raise, and my health has played it's fun game of peekaboo. I was having major chest pains, and anxiety attacks. It felt beyond my control. Each time I felt the grief of what was going on with Mylie I could not handle it. I would freak out physically (thanks fibro). Loving this child so much and not being able to do anything "but" pray. And boy did prayer happen. It was during those moments that God began to heal my heart. I would sometimes be so full of grief and the burden that all I could do was curl up and groan and beg Papa God to come. To move in me, to just be with me. It was so heavy... that hurting, hurting pain. The helplessness to watch someone I adore be in the middle of something so not her 4 year old fault, a dear friend losing something she'd wanted for so very long, and my own constantly being sick... it was so thick.
And Jesus came. He wept with me. He showed me how much more He is broken and grieving over divorce, over injustice, over miscarriages, over hurts, especially the hurts of children. His children. He reminded me that God made Mylie. That as much as I love her, that He loves her even more. Wow! How is that possible? Even now as I type I can feel His presence like a river of oil pouring, pouring over my head and down my entire body. He told me to release my burden. That I carry too much on myself. That I don't let it go. I feel so much. Sometimes I can "feel" people's hearts around me and it has always been something I have loved. I never understood that there are boundaries. That I can pray and love and be there without letting it overtake me. In these moments of intense grief, the Holy Spirit would give me just a peek at a time of His astounding love. It's such a full, overwhelming, vast love. I couldn't handle it all at once. It was not easy to HEAR that word from God. Over and over in various scriptures, through a book called The Happy Intercessor, and through people praying and speaking into my life, as well as advice from trusted friends, and being in the presence of God did I begin to understand that something much bigger was being repaired inside of me. I could feel Him binding my wounds and peace was coming and coming and coming in bursts. It did not happen overnight. I was resistant and maybe still am. I have to be honest here. I had a dream one evening. In the dream I was at a retreat with some friends. At the end of the retreat everyone was outside in the cars ready to go. I was inside of the hotel scrambling to pack my stuff. It was strewn everywhere. Not just my belongings, but also some of Mylie's. There were piles and piles of everyone else's stuff. They'd brought it all to the retreat and left it there when it was time to leave. I was frantically trying to carry out photo albums and clothes, etc. I felt so anxious. At that point my friend Hayley Powell told me to leave it there. It was now garbage.
Wow. I woke up at that point. I began to ask God to show me what to do with that dream. It's meaning is fairly obvious. So I asked to be set free and moment by moment I am learning to agree with the freedom that is already mine. I have to change that habit of trying to fix, taking that privilege of prayer and allowing it to become a time where my feelings get in the way and suddenly I am owning whatever that thing is that didn't belong to me in the first place. Basically I've got to get over myself and give it ALL to God.
I feel an openness in my spirit, a vulnerability, a bud of fresh hope for the future. Fibromyalgia has robbed me of so much, and it's far too easy to get gung-ho and steamroll ahead like I am not sick. I end up disappointing myself that way. It's a new way of living and that takes some time. The morning of March 9th as we drove to the airport I could feel the crushing rib pain and the urge to vomit. This happens occasionally. When we let my parents out at the Southwest curb I clung to my mother and sobbed in a way I haven't since I was a little girl. I felt like something inside of me was breaking. And then I clung to my dad. I wasn't ready for them to leave. Having them here helped me so much. It was a great comfort to my soul after all of these months.
After that morning is when I just let it all out. I cried fiercely and when it was over, I felt the peace over me in a way I hadn't in months. The goodness, the faithfulness, the sheer beauty of just knowing Jesus makes everything in this life bearable. There is nothing that He cannot heal or fix or restore. It's amazing to know that every single day and still find myself in worry or fear. Those things are not of God, and I have been partnering with them for far too long. I took authority back. Over my body, my life, the place I live. It was a grand old time seeing Jesus do His thing.He never ceases to surprise me with His devotion.
Now on to the medical aspect of things. I finally went to the treatment center. I was skeptical. I walked in, some cheesy tunes overhead, and a not so welcoming atmosphere. I was wrong. The doctor was amazing! He spoke with me A LOT about how those of us in fibromyalgia are in some kind of hibernation mode. What we eat and do has a lot to do with if we stay in that hibernation mode. He examined me and said I have all 18 of the 18 trigger points for fibromyalgia and he also heard an irregularity in my heartbeat called Mitral Valve Prolapse- a heart problem in which the valve that separates the upper and lower chambers of the left side of the heart does not close properly (which could explain all those chest pains and those high blood pressure scores). We went over how important it is for me to have a wheat free, gluten free, ABSOLUTELY sugar free, dairy free diet. That diet mixed with the supplements and medication should help as we first attack the candida and bacteria that is causing all of the IBS and stomach issues. I gave 16 vials of blood to check, as well as sent off hair samples. If more donations come in I will do the stool test that is more detailed then a regular one and would tell exactly what parasite is in me, if that is indeed so. Since I got sick in the Philippines that is a possibility. There is still so much to cover. This was only the first appointment. I got a shot of oxytocin which helps with pain for a couple of days. He tested my carbon monoxide as well. Right now we are only on stage one of the plan to get this fibro managed. He is focusing on my intestines first.
I started getting migraines and earaches after the appointment. I think the migraines may have been because I quit sugar cold turkey right then and there, and the earaches still come and go. I have an appointment with the clinic for my blood pressure at the end of the month, so I will ask about my earache then. I know it's not good to wait on that, but with CMSP there are not a lot of options for treatment.
I cannot recall if I wrote that I saw the ortho doctor and I do NOT need surgery. Thank the Lord! Instead I have osteoarthritis and tendonitis in my left foot and ankle and have 6 weeks of physical therapy 3x a week in Vacaville. I started this week. It was okay the first time. The guy basically told me (as many other doctors) to suck it up and push past the pain to work out. I just stared at him. Yeah, Buddy. That'd be swell. I used to walk 4 or 5 miles a day, don't you think I miss working out? He quickly backtracked as I just looked at him. He told me he knows fibromyalgia is very real and he has other patients with it. I decided to just get over it, because only other fibro sufferers know the reality of our disease. So he was a pretty nice guy despite the judgement, and he gave me some exercises to do at home as well as pool exercises. He told me to sit in the hot tub for 30 minutes 2x a day. Afterward he had me lay down and I was given Electrical Stimulation (Electrical stimulation uses an electrical current to cause a single muscle or a group of muscles to contract. By placing electrodes on the skin in various locations the physical therapist can recruit the appropriate muscle fibers. Contracting the muscle via electrical stimulation helps strengthen the affected muscle. The physical therapist can change the current setting to allow for a forceful or gentle muscle contraction. Along with increasing muscle strength, the contraction of the muscle also promotes blood supply to the area that assists in healing) for 20 minutes. It's supposed to distract the pain from my brain for a little while. It felt weird, and since my nerves are all cuckoo from the fibro I only kept it on a very low speed. At times it felt like a massage, but at others it didn't feel so pretty.
Today I went in for my second appointment. It was different this time. No personal room this time. Instead I did the exercise bike for 5 minutes, then the ankle exercises, and then more electrical stimulation. I kind of like the place. It reminds me of Private Practice with various therapists walking around sharing patients and working together. Next time I know to wear workout clothes, sneakers, and probably a ponytail. I felt like a silly gal wearing my jeans, flats, and earrings to ride an exercise bike. ;) I didn't know what we'd be doing.
I've been feeling slightly better and it's only been 2 weeks. I have more energy and less pain, but I made the mistake of thinking I was Miss Thang and the fibro caught up the other night and reminded me not to go too fast. This is a lifetime (until I'm healed!) disease and I have to learn how to manage it, not beat it or fight it. Even with the medication. He gave me specific instructions so that the stuff we are trying to kill inside does not die off too fast resulting in me feeling worse. It's a process. I am still praying and believing for more donations so I can continue treatment. The stool test is $150.00, each visit is $145.00, and the supplements are about 81.00 every time I run out. My next appointment is April 6th. I'm not worried. God knows my needs and oh how He supplies them! I am a blessed, blessed woman.
I also had an epiphany one night about my family and closest friends. You are all so wonderful. I am amazed to be a part of a group of such loving people. How on earth did I get so lucky? When my heart is happy, or when it is bruised and battered, there is this team of angels all around me. Wow, Wow. Wow.
Here is a list of my current medications:
1.Omeprazole for acid reflux (lowers magnesium which is not good)
2.Acidophilus (a probiotc)
3.Saccharomyces (healthy form of candida and will help settle my intestines)
4.Charcoal caps (for aches and pains before bed or if I wake up. Will soak up the poison. 10-20 pills a day are okay.)
5.Nitroglycerine (for mitral valve prolapse)
6.Folapro
7.Vit D 1000 (eventually will have to get to 10,000 per day. This is to turn on 200 genes turned off in hibernation mode. Cannot use too much too quickly or will burn off the bad guys too quick and I will feel it. Will help me lose lbs. For energy. Turns on LL37 which kills yeast and bacteria.)
8.Vit C 1000 (take every few hours and also bedtime)
9.Magnesium Malate (to make up for the Omeprazole and help with muscle spasms )
10.A daily multivitamin (these make me nauseous so I have not been so good about this
11.Melaton(for sleep)
Right now I am at 25 pills a day, expected to go up.
Other tips:
- drink ginger tea with Stevia
- never use Nutrasweet (it's poison)
- drink Whey
- Absolutely NO sugar
- cut back/eliminate dairy, soy, wheat, gluten
- eat primarily greens (smoothie juices of fruits and veggies soak up a lot of the poisons and gets them out)
- vitamin D deficiency results in anxiety and pain.
- magnesium defiency makes muscles weaker, which may be why I have the mitral valve prolapse
It has only been a week and one day and I have lost about 10lbs, and that is with sneaking in a sprinkle of cheese or some Chipotle. I have not had any sugar but for one tiny sip of April's soda one night. I am feeling like I have a smidge more energy and I am getting tired on my own at night to fall asleep. That hasn't happened in over a year. I've had to rely on medicine to sleep. This part is amazing.
I am quite excited to see where this journey is going next. It's a new chapter and it seems like it's going to be a bright one. I have a new appreciation for my life, have been simply enthralled by trees and flowers and creation lately, and am so in love with my Jesus. I am so delighted and encouraged by my fibro sisters. Through the Fibromyalgia Funhouse on facebook and www.chroniclesoffibro.blogspot.com I have made some spectacular friends. I am blessed by dear old friends and equally so by the new ones.
So here's to a new season, my friends. I am learning to take the sadness and troubles of this disease and allow Papa God to transform it into garments of joy and gladness.
Disclaimer: I am not like that. If you ask me how I am doing I will tell and I will give you details because when I ask you how you are, I really want to know. I don't want the trivial. I want to know people. I like to hear their hearts. I like to know the stories behind those eyes or that grin. People are so intricate and our lives are so vast, that if we can look beyond the house and fence, "everything is great" mentality maybe we could actually start being real.
Tonight finds me in a jolly state. This is the first time in a long time that I have actual time to savor the sweetness of being alone. I can throw on this nightshirt catch up on my blog and settle in for a night of relaxation. No major pressing needs holding me hostage.
The last month has been hectic to say the least. My parents were here for a month, there was and is a situation between the parents of the little girl I live with and raise, and my health has played it's fun game of peekaboo. I was having major chest pains, and anxiety attacks. It felt beyond my control. Each time I felt the grief of what was going on with Mylie I could not handle it. I would freak out physically (thanks fibro). Loving this child so much and not being able to do anything "but" pray. And boy did prayer happen. It was during those moments that God began to heal my heart. I would sometimes be so full of grief and the burden that all I could do was curl up and groan and beg Papa God to come. To move in me, to just be with me. It was so heavy... that hurting, hurting pain. The helplessness to watch someone I adore be in the middle of something so not her 4 year old fault, a dear friend losing something she'd wanted for so very long, and my own constantly being sick... it was so thick.
And Jesus came. He wept with me. He showed me how much more He is broken and grieving over divorce, over injustice, over miscarriages, over hurts, especially the hurts of children. His children. He reminded me that God made Mylie. That as much as I love her, that He loves her even more. Wow! How is that possible? Even now as I type I can feel His presence like a river of oil pouring, pouring over my head and down my entire body. He told me to release my burden. That I carry too much on myself. That I don't let it go. I feel so much. Sometimes I can "feel" people's hearts around me and it has always been something I have loved. I never understood that there are boundaries. That I can pray and love and be there without letting it overtake me. In these moments of intense grief, the Holy Spirit would give me just a peek at a time of His astounding love. It's such a full, overwhelming, vast love. I couldn't handle it all at once. It was not easy to HEAR that word from God. Over and over in various scriptures, through a book called The Happy Intercessor, and through people praying and speaking into my life, as well as advice from trusted friends, and being in the presence of God did I begin to understand that something much bigger was being repaired inside of me. I could feel Him binding my wounds and peace was coming and coming and coming in bursts. It did not happen overnight. I was resistant and maybe still am. I have to be honest here. I had a dream one evening. In the dream I was at a retreat with some friends. At the end of the retreat everyone was outside in the cars ready to go. I was inside of the hotel scrambling to pack my stuff. It was strewn everywhere. Not just my belongings, but also some of Mylie's. There were piles and piles of everyone else's stuff. They'd brought it all to the retreat and left it there when it was time to leave. I was frantically trying to carry out photo albums and clothes, etc. I felt so anxious. At that point my friend Hayley Powell told me to leave it there. It was now garbage.
Wow. I woke up at that point. I began to ask God to show me what to do with that dream. It's meaning is fairly obvious. So I asked to be set free and moment by moment I am learning to agree with the freedom that is already mine. I have to change that habit of trying to fix, taking that privilege of prayer and allowing it to become a time where my feelings get in the way and suddenly I am owning whatever that thing is that didn't belong to me in the first place. Basically I've got to get over myself and give it ALL to God.
I feel an openness in my spirit, a vulnerability, a bud of fresh hope for the future. Fibromyalgia has robbed me of so much, and it's far too easy to get gung-ho and steamroll ahead like I am not sick. I end up disappointing myself that way. It's a new way of living and that takes some time. The morning of March 9th as we drove to the airport I could feel the crushing rib pain and the urge to vomit. This happens occasionally. When we let my parents out at the Southwest curb I clung to my mother and sobbed in a way I haven't since I was a little girl. I felt like something inside of me was breaking. And then I clung to my dad. I wasn't ready for them to leave. Having them here helped me so much. It was a great comfort to my soul after all of these months.
After that morning is when I just let it all out. I cried fiercely and when it was over, I felt the peace over me in a way I hadn't in months. The goodness, the faithfulness, the sheer beauty of just knowing Jesus makes everything in this life bearable. There is nothing that He cannot heal or fix or restore. It's amazing to know that every single day and still find myself in worry or fear. Those things are not of God, and I have been partnering with them for far too long. I took authority back. Over my body, my life, the place I live. It was a grand old time seeing Jesus do His thing.He never ceases to surprise me with His devotion.
Now on to the medical aspect of things. I finally went to the treatment center. I was skeptical. I walked in, some cheesy tunes overhead, and a not so welcoming atmosphere. I was wrong. The doctor was amazing! He spoke with me A LOT about how those of us in fibromyalgia are in some kind of hibernation mode. What we eat and do has a lot to do with if we stay in that hibernation mode. He examined me and said I have all 18 of the 18 trigger points for fibromyalgia and he also heard an irregularity in my heartbeat called Mitral Valve Prolapse- a heart problem in which the valve that separates the upper and lower chambers of the left side of the heart does not close properly (which could explain all those chest pains and those high blood pressure scores). We went over how important it is for me to have a wheat free, gluten free, ABSOLUTELY sugar free, dairy free diet. That diet mixed with the supplements and medication should help as we first attack the candida and bacteria that is causing all of the IBS and stomach issues. I gave 16 vials of blood to check, as well as sent off hair samples. If more donations come in I will do the stool test that is more detailed then a regular one and would tell exactly what parasite is in me, if that is indeed so. Since I got sick in the Philippines that is a possibility. There is still so much to cover. This was only the first appointment. I got a shot of oxytocin which helps with pain for a couple of days. He tested my carbon monoxide as well. Right now we are only on stage one of the plan to get this fibro managed. He is focusing on my intestines first.
I started getting migraines and earaches after the appointment. I think the migraines may have been because I quit sugar cold turkey right then and there, and the earaches still come and go. I have an appointment with the clinic for my blood pressure at the end of the month, so I will ask about my earache then. I know it's not good to wait on that, but with CMSP there are not a lot of options for treatment.
I cannot recall if I wrote that I saw the ortho doctor and I do NOT need surgery. Thank the Lord! Instead I have osteoarthritis and tendonitis in my left foot and ankle and have 6 weeks of physical therapy 3x a week in Vacaville. I started this week. It was okay the first time. The guy basically told me (as many other doctors) to suck it up and push past the pain to work out. I just stared at him. Yeah, Buddy. That'd be swell. I used to walk 4 or 5 miles a day, don't you think I miss working out? He quickly backtracked as I just looked at him. He told me he knows fibromyalgia is very real and he has other patients with it. I decided to just get over it, because only other fibro sufferers know the reality of our disease. So he was a pretty nice guy despite the judgement, and he gave me some exercises to do at home as well as pool exercises. He told me to sit in the hot tub for 30 minutes 2x a day. Afterward he had me lay down and I was given Electrical Stimulation (Electrical stimulation uses an electrical current to cause a single muscle or a group of muscles to contract. By placing electrodes on the skin in various locations the physical therapist can recruit the appropriate muscle fibers. Contracting the muscle via electrical stimulation helps strengthen the affected muscle. The physical therapist can change the current setting to allow for a forceful or gentle muscle contraction. Along with increasing muscle strength, the contraction of the muscle also promotes blood supply to the area that assists in healing) for 20 minutes. It's supposed to distract the pain from my brain for a little while. It felt weird, and since my nerves are all cuckoo from the fibro I only kept it on a very low speed. At times it felt like a massage, but at others it didn't feel so pretty.
Today I went in for my second appointment. It was different this time. No personal room this time. Instead I did the exercise bike for 5 minutes, then the ankle exercises, and then more electrical stimulation. I kind of like the place. It reminds me of Private Practice with various therapists walking around sharing patients and working together. Next time I know to wear workout clothes, sneakers, and probably a ponytail. I felt like a silly gal wearing my jeans, flats, and earrings to ride an exercise bike. ;) I didn't know what we'd be doing.
I've been feeling slightly better and it's only been 2 weeks. I have more energy and less pain, but I made the mistake of thinking I was Miss Thang and the fibro caught up the other night and reminded me not to go too fast. This is a lifetime (until I'm healed!) disease and I have to learn how to manage it, not beat it or fight it. Even with the medication. He gave me specific instructions so that the stuff we are trying to kill inside does not die off too fast resulting in me feeling worse. It's a process. I am still praying and believing for more donations so I can continue treatment. The stool test is $150.00, each visit is $145.00, and the supplements are about 81.00 every time I run out. My next appointment is April 6th. I'm not worried. God knows my needs and oh how He supplies them! I am a blessed, blessed woman.
I also had an epiphany one night about my family and closest friends. You are all so wonderful. I am amazed to be a part of a group of such loving people. How on earth did I get so lucky? When my heart is happy, or when it is bruised and battered, there is this team of angels all around me. Wow, Wow. Wow.
Here is a list of my current medications:
1.Omeprazole for acid reflux (lowers magnesium which is not good)
2.Acidophilus (a probiotc)
3.Saccharomyces (healthy form of candida and will help settle my intestines)
4.Charcoal caps (for aches and pains before bed or if I wake up. Will soak up the poison. 10-20 pills a day are okay.)
5.Nitroglycerine (for mitral valve prolapse)
6.Folapro
7.Vit D 1000 (eventually will have to get to 10,000 per day. This is to turn on 200 genes turned off in hibernation mode. Cannot use too much too quickly or will burn off the bad guys too quick and I will feel it. Will help me lose lbs. For energy. Turns on LL37 which kills yeast and bacteria.)
8.Vit C 1000 (take every few hours and also bedtime)
9.Magnesium Malate (to make up for the Omeprazole and help with muscle spasms )
10.A daily multivitamin (these make me nauseous so I have not been so good about this
11.Melaton(for sleep)
Right now I am at 25 pills a day, expected to go up.
Other tips:
- drink ginger tea with Stevia
- never use Nutrasweet (it's poison)
- drink Whey
- Absolutely NO sugar
- cut back/eliminate dairy, soy, wheat, gluten
- eat primarily greens (smoothie juices of fruits and veggies soak up a lot of the poisons and gets them out)
- vitamin D deficiency results in anxiety and pain.
- magnesium defiency makes muscles weaker, which may be why I have the mitral valve prolapse
It has only been a week and one day and I have lost about 10lbs, and that is with sneaking in a sprinkle of cheese or some Chipotle. I have not had any sugar but for one tiny sip of April's soda one night. I am feeling like I have a smidge more energy and I am getting tired on my own at night to fall asleep. That hasn't happened in over a year. I've had to rely on medicine to sleep. This part is amazing.
I am quite excited to see where this journey is going next. It's a new chapter and it seems like it's going to be a bright one. I have a new appreciation for my life, have been simply enthralled by trees and flowers and creation lately, and am so in love with my Jesus. I am so delighted and encouraged by my fibro sisters. Through the Fibromyalgia Funhouse on facebook and www.chroniclesoffibro.blogspot.com I have made some spectacular friends. I am blessed by dear old friends and equally so by the new ones.
So here's to a new season, my friends. I am learning to take the sadness and troubles of this disease and allow Papa God to transform it into garments of joy and gladness.
Saturday, March 12, 2011
"And watch out! they're going to drag you into court. And then it will go from bad to worse, dog-eat-dog, everyone at your throat because you carry my name. You're placed there as sentinels to truth. The Message has to be preached all across the world.
When they bring you, betrayed, into court, don't worry about what you'll say. When the time comes, say what's on your heart- the Holy Spirit will make His witness in and through you.
It's going to be brother killing brother, father killing child, children killing parents. There's no telling who will hate you because of me.
Stay with it- that's what is required. Stay with it to the end. You won't be sorry; you'll be saved."
Mark 13:9-13
When they bring you, betrayed, into court, don't worry about what you'll say. When the time comes, say what's on your heart- the Holy Spirit will make His witness in and through you.
It's going to be brother killing brother, father killing child, children killing parents. There's no telling who will hate you because of me.
Stay with it- that's what is required. Stay with it to the end. You won't be sorry; you'll be saved."
Mark 13:9-13
Friday, March 11, 2011
"Growing up happens in a heartbeat. One day you're in diapers, the next day you're gone. But the memories of childhood stay with you for the long haul. I remember a place, a town, a house, like a lot of houses. A yard like a lot of other yards. On a street like a lot of other streets. And the thing is, after all these years, I still look back...with wonder."
Thursday, March 10, 2011
Friday, March 4, 2011
Papa God,
You gave me this heart. You know how much I feel. You gave me these precious ones to love and care for, so I also need you to tell me when it's time to let go. Teach me, show me, guide me in your way always. Show me how to not hold on so tightly, to release them again and again to you. You made them just as you made me. Every tear they've logged, every dream, every aspect of each of their character is made by you. Let me rest in that. I am not their Savior, you are. Show me how to not let this love burden my soul. Show me how to pray for them without getting destroyed by my own emotion. You have given me strength and I ask you to unleash that in me when I feel so weak.
This is more then being sick, this is more then watching negligent people destroy innocent lives. This is life. This is the atmosphere here on earth. How to walk in it, live in it, and not get torn down... only because of your grace and mercy, Lord.
I feel like I want to throw in the towel. In the shower all I could repeat were the words "fight or flight." You have made me a fighter for your kingdom and so I implore you to equip me. Not with hatred or anger or bitterness, but let me have your heartbeat, Jesus. Let me be mindful of heaven and the plans you have outlined already.
Oh Papa, show yourself in all of these situations around me. You are here, you are there. There is nothing to fear, so why am I afraid? Why can I only cry and type meaningless words on this keyboard. Songs of your love floating from speakers and befalling on these ears. I am sad. I am lost inside of my own grief, and it's not even mine to grieve.
Help me Daddy God.
I am looking up, but it is not me I am worried for. It is the voiceless ones that break my heart to bits. How can I fix this?
I can't.
I can't.
But You can. You are. Show me your heart.
You gave me this heart. You know how much I feel. You gave me these precious ones to love and care for, so I also need you to tell me when it's time to let go. Teach me, show me, guide me in your way always. Show me how to not hold on so tightly, to release them again and again to you. You made them just as you made me. Every tear they've logged, every dream, every aspect of each of their character is made by you. Let me rest in that. I am not their Savior, you are. Show me how to not let this love burden my soul. Show me how to pray for them without getting destroyed by my own emotion. You have given me strength and I ask you to unleash that in me when I feel so weak.
This is more then being sick, this is more then watching negligent people destroy innocent lives. This is life. This is the atmosphere here on earth. How to walk in it, live in it, and not get torn down... only because of your grace and mercy, Lord.
I feel like I want to throw in the towel. In the shower all I could repeat were the words "fight or flight." You have made me a fighter for your kingdom and so I implore you to equip me. Not with hatred or anger or bitterness, but let me have your heartbeat, Jesus. Let me be mindful of heaven and the plans you have outlined already.
Oh Papa, show yourself in all of these situations around me. You are here, you are there. There is nothing to fear, so why am I afraid? Why can I only cry and type meaningless words on this keyboard. Songs of your love floating from speakers and befalling on these ears. I am sad. I am lost inside of my own grief, and it's not even mine to grieve.
Help me Daddy God.
I am looking up, but it is not me I am worried for. It is the voiceless ones that break my heart to bits. How can I fix this?
I can't.
I can't.
But You can. You are. Show me your heart.
Wrath
Oh satan you've gone and messed up now. You mess with a child I love and you mess with all of the saints. It's a new way for God to show His power. The faithful, loving hand of the Creator of the world is upon us and He will win EVERY SINGLE TIME. You have your fun now but you are a loser.
I have never been so mad in all of my life. You have stolen a lot from me over the years and I praise God for His restoration. I will NOT let you ensnare me in this crippling, ugly inferno of hatred. Instead I am going to pray that much harder for the blessings of God to fall.
Holy Spirit come and bring light and love and HOPE. Let me wear hope as a banner of your love.
You are in control and I love you God.
I have never been so mad in all of my life. You have stolen a lot from me over the years and I praise God for His restoration. I will NOT let you ensnare me in this crippling, ugly inferno of hatred. Instead I am going to pray that much harder for the blessings of God to fall.
Holy Spirit come and bring light and love and HOPE. Let me wear hope as a banner of your love.
You are in control and I love you God.
I woke up wishing I could return to slumber. It's like that generally but some days are much worse then the normal "blah." I'm not sure if it's because I went to the movies last night (again, earplugs save my life)or if it's the stress of next week with all the appointments, my parents leaving, and just being in this waiting zone.
Probably all of it.
Things that get me through everyday:
-Scripture
-Prayer
-Texting/connecting with my online fibro family
-Reading blogs
-Journaling
-Earplugs
Next week is a heavy week. Lord, come swiftly to my side, please.
Probably all of it.
Things that get me through everyday:
-Scripture
-Prayer
-Texting/connecting with my online fibro family
-Reading blogs
-Journaling
-Earplugs
Next week is a heavy week. Lord, come swiftly to my side, please.
Thursday, March 3, 2011
Light Therapy
Today I had my dermatologist appointment for light therapy. I barely have psoriasis but it helps make it go away. I go back in another month for another treatment. Today we went 15 extra seconds. It's amazing to me that after a minute and 45 seconds it helps so much! Just by light!!!!
My parents are leaving far too soon (in my opinion) next week, and I have appointments galore. Ortho and the Treatment Center on Monday (going to be a long day!) and Ob/Gyn on Tuesday. Until then I am resting. We're going to see a movie tonight and then I'm going to continue watching Private Practice- season 1. I love library rentals!
I drove again this week and I must say I really, really miss having a car. I was so nervous after not driving regularly for 6 months but it's no problem. I am praying for a car so that I can start going to corporate prayer and see the kids more. I know, I know. I tend to get "ahead" of being sick, but honestly all of last year was spent in emergency rooms and not knowing what was next and while it is still like that on a smaller scale, I feel ready to start LIVING WITH JOY again. Only God knows the plan, but I can feel Him peppering my heart for a new season. Hopefully it won't be so brittle!
I am way nervous for the Treatment Center. Half of me is so used to being unheard by medical professionals that I am wondering if my heart will be broken again. I must trust, I must walk ahead, I must do it afraid.
I am definitely going to blog about what was prophesied over me during the conference. Right now it still belongs to me and Jesus.
Psalm 77
1 I yell out to my God, I yell with all my might, I yell at the top of my lungs. He listens.
2-6 I found myself in trouble and went looking for my Lord;
my life was an open wound that wouldn't heal.
When friends said, "Everything will turn out all right,"
I didn't believe a word they said.
I remember God—and shake my head.
I bow my head—then wring my hands.
I'm awake all night—not a wink of sleep;
I can't even say what's bothering me.
I go over the days one by one,
I ponder the years gone by.
I strum my lute all through the night,
wondering how to get my life together.
7-10 Will the Lord walk off and leave us for good?
Will he never smile again?
Is his love worn threadbare?
Has his salvation promise burned out?
Has God forgotten his manners?
Has he angrily stalked off and left us?
"Just my luck," I said. "The High God goes out of business
just the moment I need him."
11-12 Once again I'll go over what God has done,
lay out on the table the ancient wonders;
I'll ponder all the things you've accomplished,
and give a long, loving look at your acts.
13-15 O God! Your way is holy!
No god is great like God!
You're the God who makes things happen;
you showed everyone what you can do—
You pulled your people out of the worst kind of trouble,
rescued the children of Jacob and Joseph.
16-19 Ocean saw you in action, God,
saw you and trembled with fear;
Deep Ocean was scared to death.
Clouds belched buckets of rain,
Sky exploded with thunder,
your arrows flashing this way and that.
From Whirlwind came your thundering voice,
Lightning exposed the world,
Earth reeled and rocked.
You strode right through Ocean,
walked straight through roaring Ocean,
but nobody saw you come or go.
20 Hidden in the hands of Moses and Aaron,
You led your people like a flock of sheep.
My parents are leaving far too soon (in my opinion) next week, and I have appointments galore. Ortho and the Treatment Center on Monday (going to be a long day!) and Ob/Gyn on Tuesday. Until then I am resting. We're going to see a movie tonight and then I'm going to continue watching Private Practice- season 1. I love library rentals!
I drove again this week and I must say I really, really miss having a car. I was so nervous after not driving regularly for 6 months but it's no problem. I am praying for a car so that I can start going to corporate prayer and see the kids more. I know, I know. I tend to get "ahead" of being sick, but honestly all of last year was spent in emergency rooms and not knowing what was next and while it is still like that on a smaller scale, I feel ready to start LIVING WITH JOY again. Only God knows the plan, but I can feel Him peppering my heart for a new season. Hopefully it won't be so brittle!
I am way nervous for the Treatment Center. Half of me is so used to being unheard by medical professionals that I am wondering if my heart will be broken again. I must trust, I must walk ahead, I must do it afraid.
I am definitely going to blog about what was prophesied over me during the conference. Right now it still belongs to me and Jesus.
Psalm 77
1 I yell out to my God, I yell with all my might, I yell at the top of my lungs. He listens.
2-6 I found myself in trouble and went looking for my Lord;
my life was an open wound that wouldn't heal.
When friends said, "Everything will turn out all right,"
I didn't believe a word they said.
I remember God—and shake my head.
I bow my head—then wring my hands.
I'm awake all night—not a wink of sleep;
I can't even say what's bothering me.
I go over the days one by one,
I ponder the years gone by.
I strum my lute all through the night,
wondering how to get my life together.
7-10 Will the Lord walk off and leave us for good?
Will he never smile again?
Is his love worn threadbare?
Has his salvation promise burned out?
Has God forgotten his manners?
Has he angrily stalked off and left us?
"Just my luck," I said. "The High God goes out of business
just the moment I need him."
11-12 Once again I'll go over what God has done,
lay out on the table the ancient wonders;
I'll ponder all the things you've accomplished,
and give a long, loving look at your acts.
13-15 O God! Your way is holy!
No god is great like God!
You're the God who makes things happen;
you showed everyone what you can do—
You pulled your people out of the worst kind of trouble,
rescued the children of Jacob and Joseph.
16-19 Ocean saw you in action, God,
saw you and trembled with fear;
Deep Ocean was scared to death.
Clouds belched buckets of rain,
Sky exploded with thunder,
your arrows flashing this way and that.
From Whirlwind came your thundering voice,
Lightning exposed the world,
Earth reeled and rocked.
You strode right through Ocean,
walked straight through roaring Ocean,
but nobody saw you come or go.
20 Hidden in the hands of Moses and Aaron,
You led your people like a flock of sheep.
Wednesday, March 2, 2011
A lot has gone on lately. I don't even really feel like writing. Some things have been amazing and wonderful- such as attending the annual youth conference at church with 3 of my very favorite teenage girls. God spoke to my heart so much during the conference. I got prophesied over for the 4th (I think) time in my life and God had some confirming things to speak into my spirit. I will expand on that more later. Right now it's between me and Jesus and I'm still praying on everything. Other things have not felt so wonderful.
I don't even remember what I've updated until so I'll just start by saying I had the MRI for my left ankle yesterday. It went well, and I have a follow-up with the ortho doctor on Monday. I guess I will find out if I definitely need surgery.
Last night I was sitting outside on my ottoman chair. It was cold, but I was fine. I noticed my back was on fire, which is not unusual, so I hunched over and kind of folded into myself to try to release some of the pain. I sat like that for about 5-10 minutes, and when I tried to move I realized I was "locked" in place. My fingers were bent and my hands interlaced with one another. It felt like a vise of pain was gripping me from the entire back (hunched over), elbows, arms, hands, and fingers. I was literally stuck. I kept telling myself I could move and was trying to force my fingers to uncurl. As they slowly unbent it felt like they were being ripped off. I had to stop. I was howling in pain.
I sat like that for a good 15-20 minutes. The pizza delivery guy came and dropped off my parents' order. It was beyond embarrassing. I could not move at all. He stopped and asked me if I was alright....
No, I was not.
Finally I could move just a little. My fingers uncurled super slowly and then I was able to sit up. I have absolutely no idea what happened, but it was pretty scary. It's never happened before, but I definitely could not move.
I'm not in the mood to do any of this, but who ever is? I don't feel like going to appointments, and possibly getting surgery, and I am not ready for my parents to go back to NC next Wednesday.
I feel like there is so much going on. NO, there IS so much going on that I cannot stand it. This afternoon I sat in the closet and just sulked to God. I feel tormented by things going on that I have no control over. A dear wonderful friend of mine is going through some major stuff and all I could do was cry and beg God for His intervention. She is a faithful woman of the Lord and I know she trusts God, but I am angry FOR her. But God is her comforter and her deliverer. I must remember this and claim it for her life.
I am thankful for wonderful people and glorious creation. I have seen the heart of God displayed in so many ways over these months, and it is quite astounding. I sit here feeling like my heart is bleeding for these things around me that are so broken and sad, and realize that God's heart is so much more grieved then I could ever possibly understand.
Sometimes life is approached methodically, but there are so many twists and turns I cannot fathom how anyone could live like that. There is so much more freedom in allowing even the unlovely things in life to alter our course. God is dancing over us even as we mourn, and to trust that unwaveringly is the ONLY way I have ever gotten through this past year.
I am shocked that it is already March. Life is happening all around us. It's breathtaking and shocking and heartbreaking and wonderful all at once. I don't want to just watch, I want to thrive in the excellence of creation.
I have been getting anxiety attacks and chest pains ever since that first night the police came a couple of weeks ago. I worry. I wonder if going to the Treatment Center next Monday is going to disappoint me. I wonder what is to come in the months ahead. I do not want surgery. I do not want to go in for the light therapy for psoriasis tomorrow. I don't want to see the ob/gyn next week and continue to investigate my mysterious cervical bleeding. I don't want to do any of it.
I just want to sit somewhere beautiful and rest in the love of Jesus.
I am resting. I am waiting. I am believing. I am not ashamed or sorry for being sad. It happens. I have let go of that attitude that says we have to have it together. That's not humility, that's ego. That's pride. I am admitting I am confused, and sad. I don't ever want to come to a place in life where I feel I have "arrived" and no longer need grace and mercy. I do not ever want to be the super Christian woman who never shows MY needs. I've lived that way for a long time. I leave it now.
There is a struggle everyday. Heart and head. Fibromyalgia is real and crippling and all consuming, and I am done fighting for awhile.
I am resting.
I don't even remember what I've updated until so I'll just start by saying I had the MRI for my left ankle yesterday. It went well, and I have a follow-up with the ortho doctor on Monday. I guess I will find out if I definitely need surgery.
Last night I was sitting outside on my ottoman chair. It was cold, but I was fine. I noticed my back was on fire, which is not unusual, so I hunched over and kind of folded into myself to try to release some of the pain. I sat like that for about 5-10 minutes, and when I tried to move I realized I was "locked" in place. My fingers were bent and my hands interlaced with one another. It felt like a vise of pain was gripping me from the entire back (hunched over), elbows, arms, hands, and fingers. I was literally stuck. I kept telling myself I could move and was trying to force my fingers to uncurl. As they slowly unbent it felt like they were being ripped off. I had to stop. I was howling in pain.
I sat like that for a good 15-20 minutes. The pizza delivery guy came and dropped off my parents' order. It was beyond embarrassing. I could not move at all. He stopped and asked me if I was alright....
No, I was not.
Finally I could move just a little. My fingers uncurled super slowly and then I was able to sit up. I have absolutely no idea what happened, but it was pretty scary. It's never happened before, but I definitely could not move.
I'm not in the mood to do any of this, but who ever is? I don't feel like going to appointments, and possibly getting surgery, and I am not ready for my parents to go back to NC next Wednesday.
I feel like there is so much going on. NO, there IS so much going on that I cannot stand it. This afternoon I sat in the closet and just sulked to God. I feel tormented by things going on that I have no control over. A dear wonderful friend of mine is going through some major stuff and all I could do was cry and beg God for His intervention. She is a faithful woman of the Lord and I know she trusts God, but I am angry FOR her. But God is her comforter and her deliverer. I must remember this and claim it for her life.
I am thankful for wonderful people and glorious creation. I have seen the heart of God displayed in so many ways over these months, and it is quite astounding. I sit here feeling like my heart is bleeding for these things around me that are so broken and sad, and realize that God's heart is so much more grieved then I could ever possibly understand.
Sometimes life is approached methodically, but there are so many twists and turns I cannot fathom how anyone could live like that. There is so much more freedom in allowing even the unlovely things in life to alter our course. God is dancing over us even as we mourn, and to trust that unwaveringly is the ONLY way I have ever gotten through this past year.
I am shocked that it is already March. Life is happening all around us. It's breathtaking and shocking and heartbreaking and wonderful all at once. I don't want to just watch, I want to thrive in the excellence of creation.
I have been getting anxiety attacks and chest pains ever since that first night the police came a couple of weeks ago. I worry. I wonder if going to the Treatment Center next Monday is going to disappoint me. I wonder what is to come in the months ahead. I do not want surgery. I do not want to go in for the light therapy for psoriasis tomorrow. I don't want to see the ob/gyn next week and continue to investigate my mysterious cervical bleeding. I don't want to do any of it.
I just want to sit somewhere beautiful and rest in the love of Jesus.
I am resting. I am waiting. I am believing. I am not ashamed or sorry for being sad. It happens. I have let go of that attitude that says we have to have it together. That's not humility, that's ego. That's pride. I am admitting I am confused, and sad. I don't ever want to come to a place in life where I feel I have "arrived" and no longer need grace and mercy. I do not ever want to be the super Christian woman who never shows MY needs. I've lived that way for a long time. I leave it now.
There is a struggle everyday. Heart and head. Fibromyalgia is real and crippling and all consuming, and I am done fighting for awhile.
I am resting.
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