Romans 12:1-2 So here's what I want you to do, God helping you: Take your everyday, ordinary life—your sleeping, eating, going-to-work, and walking-around life—and place it before God as an offering. Embracing what God does for you is the best thing you can do for him. Don't become so well-adjusted to your culture that you fit into it without even thinking. Instead, fix your attention on God. You'll be changed from the inside out. Readily recognize what he wants from you, and quickly respond to it. Unlike the culture around you, always dragging you down to its level of immaturity, God brings the best out of you, develops well-formed maturity in you.
I haven't felt much like writing. The cold has snuck in and held fast to my bones. I have been wearing my earplugs during the day again because sounds are too much, and my IBS has been pure evil. Blood and all. Now it's time for me to play catch up and try to make some sort of sense of all that I have been feeling the last couple of weeks.
Instead of trying to recall it all I will just copy my journal entries onto here.
*This entry is horribly depressing. They indicate my mind frame at the time. Again, if you choose to judge please do not read. Thank you.
December 28, 2010
Dreams of Freddy Kruger. Being chased. Again. I feel like there is no end. I feel alone. I am in one of the worst pits. One where I am resentful and scared and oh so tired of everything. How can I handle this? My insides are broken again. Right now I am almost positive that I will never be well again. I feel utterly alone. No one else around me is going through this and so all of their words float meaningless to my ears. How do I describe how it feels to wake up- back searing, abdomen swollen and full... aching. My eczema has chosen this time to reappear. I am losing this battle with my body. It is turning on me, this vessel I've inhabited for 30 years. It's breaking down. I feel overlooked by God. I feel like my faith must have been a trick. All of the moments I was in your presence, Lord... it was and is real. But I am sinking, sinking so far down into the mud. I don't want to move. I don't want to think.
I feel ashamed as a Christian woman to say I am scared and sad. I try to ask for prayer, reach out but my voice is not heard. Everyone busy going about their lives. I can't blame them. I was like that too. I don't even want to take a shower. I don't want to move. No make-up, no conversations. No me. There is so much pressure to be "put together." Not self imposed pressure, but I am noticing acutely how much pressure we put on each other as believers to be "well." Not all, but some believers tend to judge. If you are sick then you must be sinning. Um. Except Cancer. That's the accepted disease in our country. I've been through that scare too. Praise the Lord my Cancer growth did not flare into full fledged Cancer, but it was touch and go for awhile.
I miss my brother. My childhood playmate. I miss who I was when life was full of possibility and I was just a little girl playing drive-thru in the garage. I wonder if this is all a dream. Am I truly still a young girl asleep in my bed? will I wake up and know what to do differently? Would I do it differently if that were so? I'm having trouble believing this is my life. What happened to me? All I can do today is cry. I don't feel like being strong. I don't feel like pretending I am fine. I want my mom. I want my dad to bring me home a Barbie ice cream maker and make everything okay. Nothing ever feels okay anymore. When people say "trust God" do they even know what that means? I DO trust my God, but I also know my God can handle my tears and anger. He can handle my heartache. And what of you who rattle off scriptures and preach Jesus, but who don't live it out? Just being real here. I am alone. I am spiritually dry. The tank is empty. I don't need a lecture from you. A lot of you are hypocrites.
This silent monster slides itself all over my body taking whatever it wants. I can't stop it. All I can do is try to quell it whenever it is made known by the various infections that pop up every week or two. I know I have Fibromyalgia and other ailments, but I am not totally convinced the one test I had for Lupus is accurate. I tested negative, but I tested positive for an autoimmune disease. Fibro doesn't show up in tests.
I hate how I live and still I would not go backwards, I want that old life less than I want what is happening now. So what then? Where is the new life? That's a hard one because I am trying to move forward but my body holds me still.
People spout off about trust and "it'll get better." Do you know that? Can you guarantee me it will definitely get better? Why is there no allowance for pain? Not to wallow, not to pity, not to stay in- but to be honest about it. To confess it. To gut it out. To deal with it. Why do people only want to be here if I am in great shape? If I can listen and plan and be the old me?
FACE IT. Relationships have to change. Not just me hiding out but change. I have to be realistic.
I've been sick before. I've had hard times that have tried my spirits and my will and I have come out strong. This time I have almost no fight left. I want to call all of them- BEG for them to intercede. Beg them to be here for me but I can't. I'm ashamed and oh so afraid they will say no or continue to ignore me. I feel I reached out and many have turned away.
Many sufferers have lost their friendships. I am one of them.
I want to spare Aaron. I want to spare all of them. This sickness is all consuming. One day smooth, the next horrendous. There is no consistency. I've always let others go ahead of me. I swallowed my hurts and let them trek. I can't do that anymore. I have to talk now. I feel if they would all join together that our circle could buoy me up and out of this anger and sadness but no one will and I can't expect that. I have to do this alone.
Anger coils around me and refuses to let go. I am lost. I am silent. I listen. Complaints about life. "At least you're healthy," I want to say. "Be glad about that. Stop taking it for granted." But, of course, just as I was, a healthy person cannot realize the extreme value of their health until it's not there.
I no longer participate. I don't call anyone except for my family. I don't go out except to church or appointments or a random trip to the store. I hide.
I am embarrassed to be so weak. I don't want to bring attention to myself. I don't want to crimp the good time with all of my fibro issues. I would crimp the time. I can't concentrate, can't handle the sounds, don't want to listen to rants about guys or jobs. It's too hard. Nor do I want to make it all about me. What I want is to be present and active. I am neither. Therefore I would be robbing someone of the attention they deserve. Fibromyalgia is kind of narcissistic. It demands all of the attention all of the time.
Psalm 6:8
You've kept track of my every toss and turn through the sleepless nights. Each tear
entered into your ledger, each ache written in your book.
Watched Joyce Meyer... "Janet, you have permission to have weaknesses."-Jesus
Today I feel... listless, swollen, tired, pained, depressed, morose, invisible, unloved, unwanted.
Whenever I chance it and meet with people I end up regretting it. I am only reminded of what I am not a part of and I feel worse because not much has changed. I spend the entire time listening to them and offering support. 5 minutes on me, 2 hours on them. The dynamics are the same, but I'm not. I don't have that kind of mental energy to listen to anyone blather about garden hoses and senseless gossip. I hate gossip anyway, and though I participated (repented and done) for a few bitter months, I refuse to partake in it.
What's the point of my blog? Maybe 2 people read it and they are my family. Out of all the people I know... 2 people.
I'm not okay. I'm not okay.
My mom and Mylie. Push through, push through, push through. Something dark and twisted has lodged itself in my gut.
Fade.
Faded.
No support system.
Terror.
Chills.
Death.
Dark.
I was the strong one.
Not anymore.
But now that I need help, all those I helped are not here for me.
Being sick weeds out the counterfeit friends fast.
No me.
Empty. Emotionless. Void.
VOID.
People want to be around you when you are on top.
As long as I could stay angry I was "okay." Anger is emotion at least. Now I just don't care. At all. Food? Eh.
I don't want to do anything. I am just going through the motions. 1 2 3...
If I have something to focus on I won't be depressed. A towel. A bad remark. I can stay angry. But I'm sliding into sadness so thick I can't see anymore. I don't want to fight. I don't want to pretend.
Smile on.
Convincing even myself that I am happy.
Disregard.
This is the moment. Slide in or keep fighting. I don't want to fight anymore.
12-30-10
A new year is approaching. Why do I feel so nervous? I sit here feeling absolutely horrible. I am queasy, bloated, and the fatigue saps extra hard all over my limbs begging me to please be so still, to close my eyes. All I can see are piles around me. A reminder deep inside to finish my laundry, stop being so lazy. Am I lazy? No. I genuinely want to go walking, shower, go through my boxes, clean Mylie's closet, go online... but instead I just sit here.
@Contemplation Point later that day...
Oh Lord, it's not about me. My issue is that I am thinking so much about me and my illness. How do I stop and refocus on you? I don't want to keep going like this. I want to sit with you and allow you to bind up my heart. Why do I feel so... disconnected from everything?
Tears. I remember when I was on fire for you. I remember how much I sought your face. I miss you Jesus. Sincerely I miss you. I ache to sit at your feet again. I ache to be held by you. I'm so sorry Jesus for snapping at Barbara (I went back to Planned Parenthood for my PID/Bacterial Vaginosis check up 2 days after the diagnosis and the clinician Barbara was one of the medical people who treated me like I am crazy. I snapped at her and used words that are not like me at all, and I made her lower lip quiver. I sat there with the gown over my nakedness and told her if she was not going to help me that I would not let her invade me. Yes, I really did say invade. I am not proud of my behavior but I did apologize AND I do need to proactive about MY health. After numerous procedures and medications one starts to lose patience with the medical robots that don't take us seriously). I'm sorry for snapping at Aaron. I am sorry for all the slander. I let go of my pressure to be superwoman. I let go of the desperate way I have clung to who I once was. If I asked you to change me, then I cannot be upset when you do. If fibromyalgia is how you are stripping me of my pride and false ideas so be it. I accept it. I welcome it. I have given the enemy several major footholds. I have been an instigator of gossip and anger. I release it now. I ask for emotional healing. From each and every hurt over the last 2 years pertaining to my condition. I ask that you take memories and scars of rejection. Bind them and sew up my heart so that I never allow that doubt to creep in. I give you every feeling of failure. I give you my confusion over my health and body. I give you my future. I once wrote a letter to you and signed it. I asked you to take all of me. I pray that I would stop asking why and start asking "what now?" I've been so angry. I've hated being alive. I've wanted to not exist. I've felt overlooked by you. Right now I release control. I release that drive, that fear that causes me to cry or scream. I accept my limitations. I accept that my flesh is weak. I accept that I am being used despite my weaknesses. Show me Papa. Show me how to love with abandon again. Start from scratch. Remake this attitude, this heart of mine.
I leave...
my ministry, my leadership history, my missions trip experience, my plans.
All of those begin with "my." Transform it to your plans, your ministry, your life, Show me what you want me to do. I grieve my end, but I welcome my beginning. I feel a shift in my spirit. Give me balance, oh Lord. Let me never have too much of anything lest I stop relying on you.
Let me be ever in a state of dependence on you. Let me burn for you, Jesus. Let me remember that tiny quiver of Barbara's lower lip to remind me to love. I forgive myself as you forgive me. I recognize my heir-ship. I recognize my birthright in Jesus. I am humbled by your decision to choose me and even more boggled by the fact that you chose me knowing how I would fail in the future. Oh great are your plans, Jesus!
I want to love others more then myself, but Oh Jesus, you also know that is my downfall. I continually "please" others by pretending my needs are met and I don't need support. I pray that the email I sent struck a chord and that I will be open to accepting help and support in the days to come.
I admit I am weak, I admit I need you Jesus. I need fellowship again. Authentic fellowship. Akin to my Parkway days. Show me what that truly means aside from leadership status and hanging out.
Show me who to help and who can help me. I accept your grace. I accept that right now I have physical limitations. I give myself permission to rest. The bathroom can get dirty sometimes. Laundry can wait. I can lay down. I give myself permission to be weak as long as I turn in hope and expectation that your strength will hold me.
Eyes off me, eyes on Jesus.
Romance me, delight me, spin me, surprise me, love me, hold me.
Show me what to do, oh Lord. no pride. No falsehoods. Just me and you. Just me and you.
PRAY.
Exodus 14:14 "God will fight the battle for you. And you? You keep your mouths shut!"
Luke 4:16-21
He came to Nazareth where he had been reared. As he always did on the Sabbath, he went to the meeting place. When he stood up to read, he was handed the scroll of the prophet Isaiah. Unrolling the scroll, he found the place where it was written,
God's Spirit is on me;
he's chosen me to preach the Message of good news to
the poor,
Sent me to announce pardon to prisoners and
recovery of sight to the blind,
To set the burdened and battered free,
to announce, "This is God's year to act!"
He rolled up the scroll, handed it back to the assistant, and sat down. Every eye in the place was on him, intent. Then he started in, "You've just heard Scripture make history. It came true just now in this place."
2 Corinthians 7:11-12
And now, isn't it wonderful all the ways in which this distress has goaded you closer to God? You're more alive, more concerned, more sensitive, more reverent, more human, more passionate, more responsible. Looked at from any angle, you've come out of this with purity of heart. And that is what I was hoping for in the first place when I wrote the letter. My primary concern was not for the one who did the wrong or even the one wronged, but for you—that you would realize and act upon the deep, deep ties between us before God. That's what happened—and we felt just great.
12-31-10
I miss North Carolina.
I'm hungry.
My stomach hurts.
My body hurts.
I'm tired.
My blog is a waste of time. No one reads it. I'm tired of highs and lows emotionally. I almost don't care if CMSP and EBT are denied. I hate going to the doctor. It stresses me out. Everything stresses me out. It's hard to exist in a world I don't agree with.
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Today:
Sometime within this week I stumbled upon an online community that is encouraging and supportive. There are blogs and forums where many people share their fibro struggles. It has aided in my desire to go against this beast and tame it. That does not mean that is without the struggle. For example, I no longer wear tampons. So I found really good pads. I hate pads. That seems trite but it's not. It feels as though I always have to bend to this condition. We who suffer must always lose out. Our body says what we need to do. Sometimes we don't listen. We fight against it and pay the price in a huge way.
I indulged big time in sugar and chocolate during the holidays. This has led to the most ultimate fatigue and pain level in awhile. Mylie and I tried yoga last week but it was way too painful. A blog I read daily suggested a Fibromyalgia Yoga book. I may have to check that out. Mylie asks me when we can do pilates again. Frankly it has been over a year since I have been able to do any sort of exercise aside from swimming. I do miss pilates though. A lot.
All of this downtrodden year and some change finally found me searching online for treatment centers here. I found one a mere 45 minutes away! I am really jazzed to start writing sponsor letters so I can be seen on my March 7th appointment. There is absolutely no way I can pay for it since I am unable to work and disability and social services have denied me twice. I am going to apply again. I don't expect different results because I have learned that those people are not really concerned about us as people. It's all a big game.
So I've had some highs and lows. My sadness has lifted for now, but anger has kicked in full force. I am ashamed to say that yesterday I was completely unreasonable. I am shocked I did not grow horns. I was yelling and screaming. "F you" may have slipped from these lips a time or two. I am not berating myself but I am confessing that I was unstoppable. The day before I cried in Old Navy because I felt so overwhelmed that we had to exchange Aaron's pants. To understand this you must have Fibromyalgia. It takes so much energy to even get up. I seriously can be thirsty galore or need to pee, but the idea of moving is so impossible that I just lay there. Some days it takes a long time to even get up and going. I am working on that by trying to incorporate small goals into my week. Upon numerous conversations with the one who is with me the most, I was given the startling information that even though I believe I am not doing anything that I actually do way too much for someone with fibro.
Wow.
That helps to know because that feeling of being a failure creeps in occasionally.
Right now my goal is to educate myself on fibro and to plug into the community that is available online. I have put links to some helpful sites on my main page, and I encourage all of you to read them. I also plan to spend some time working on my anger. I can't seem to control it. Everything irritates me and I can't stop it. It can be a voice on the phone or people who just talk incessantly. It's pretty annoying when you have no energy, are always tired, and pain is your constant companion.
"The strongest and sweetest songs yet remain to be sung."-Walt Whitman
"It's not what's happening to you now or what has happened in your past that determines who you become. Rather, it's your decisions about what to focus on, what things mean to you, and what you're going to do about them that will determine your ultimate destiny."-Anthony Robbins
"Remember the feeling as a child when you woke up and morning smiled, it's time you felt like that again."
I will be turning my phone off a lot and only checking texts and voice mail. The best way to reach me is facebook or this blog. I am not talking on the phone for an extended period of time. Please do not ask me to call you.
Thanks for reading.
