Poor Barbara

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.

************************************************************************************
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.

Hazy Days

I've been feeling incredibly blah this last week. I have tons to say, but I don't have the energy to crank it all out just yet. I am trying to talk myself into a shower which I know will make me feel better. Perhaps afterwards I will have some umph to write out the week it's been.

Aaron

Our caregivers should get rewards.

I thank most of all my best friend, Aaron. He is here everyday. EVERY single day. He helps me with Mylie, he listens to me talk FOREVER and 8 minutes about Fibromyalgia, he drives me to and fro, he prepares my medication. He is an awesome example of a man living with a servant's heart. He takes it all in stride and never judges me for flipping out.

Thank you.

“Your life is for displaying the superiority of a life lived in God. That’s why Christians get cancer. That’s why Christians have a prodigal. Eternity is racing upon us. I want to be the guy who displayed the superiority of God through a lot of trials. If He’s given you a lot, He loves you and trusts you a lot. When something hard comes into your life, you should be like ‘woo hoo’ because this is your chance to show the world who He is.”
~James MacDonald

Because of the extravagance of those revelations, and so I wouldn't get a big head, I was given the gift of a handicap to keep me in constant touch with my limitations. Satan's angel did his best to get me down; what he in fact did was push me to my knees. No danger then of walking around high and mighty! At first I didn't think of it as a gift, and begged God to remove it. Three times I did that, and then he told me,

My grace is enough; it's all you need.
My strength comes into its own in your weakness.
Once I heard that, I was glad to let it happen. I quit focusing on the handicap and began appreciating the gift. It was a case of Christ's strength moving in on my weakness. Now I take limitations in stride, and with good cheer, these limitations that cut me down to size—abuse, accidents, opposition, bad breaks. I just let Christ take over! And so the weaker I get, the stronger I become.
2 Cor. 12:7-10

Rant

Don't read this if you are going to give me some crappy advice I don't want or if you aim to judge me. Stuff it. You aren't me and you aren't living with Fibromyalgia (and if you are then you will know EXACTLY what I am talking about)so your opinion doesn't mean anything to me regarding my health. Most people (not all since there are a few of you lovelies that actually try to fight this battle with us)don't get the whole fibro deal, nor do they extend grace to those suffering from it.

I woke up exhausted. Nothing new at all. Spoke to my parents which turned into the commitment to shop for Mylie's Christmas presents. I abhor shopping absolutely. Unless it's a bookstore (especially a used one!). I am not even going to pretend I enjoy it. I loathe it actually. So for me to shop the day before Christmas Eve with Fibromyalgia to boot is a testament to how much I love Mylie. For real.

So I was fine. For once the lights and sounds weren't driving me bananas. I was in the motorized cart @ Target (favorite) and all was dandy until... the cart stopped. It just flat out died on us. So my Auntie grabbed a regular cart and I proceeded to shop that way. My body was not having it. Having another staph infection PLUS the kidney infection on top of the daily fibro whirl was too much. I braved it though. I walked, got the baby powder (two since Mylie had to have one too. LOL.) and cut the trip short. As I put the stuff on the conveyor I almost blacked out. I had to blink slowly a few times and sort of "regroup (I don't know how to adequately convey what it is like). I told my Auntie I was tired (major understatement) and it looked as though she might have rolled her eyes. Most people think it's something we can shake off.

It's not.

I'm so over being told "it's fine" or that I can do this or that. I am over being treated like I am crazy. People complain after A DAY (as in 1!) of being sick. Feeling like they have the flu, even simple colds... so I say to those who sniffle and whine and moan over 1 freaking day... try 365+ days and then tell me I am "fine."

This new staph boil hurts like crazy and it itches. It did not do this the first time and I had about 4 going on at that time. Oh bother. I started taking the doxy today and putting the cream on it again. I am so frazzled over every bump or bite I find on me or Mylie. She still has a random cough and her nose is filled with boogers that harden and dry everyday. I moisten the boogers everyday with a q-tip and then later have her blow her nose out. If I don't moisten she won't let me pick them out anymore. She's been to the doctor quite a few times recently. I'm not sure if the stress of everything is getting to her- shuttling back and forth, etc. Last week she vomited after coughing, and now it looks like she has little spots on her butt. I put the cream on it just in case but I'm not sure...

My nose is also insanely itchy. I don't know if it is allergies or what. I never had allergies until 2005 when they swept fierce. I was working at the time, had never had Benadryl and did not know at all how strong they are! Man, I kept falling asleep and the kids would shake me awake. It's such a strong over the counter medicine. Since fibro makes the body sensitive to everything (really really) I cannot take over the counter stuff at all anymore... except for Tylenol... so maybe "bennie" is okay...

So on the way home today the IBS cramps hit again (I don't recall if I wrote that I had to GO bad at the drive thru the other night. Haven't had it that bad in awhile). I went into the Starbucks and passed the crowd. I always feel so guilty using a one person restroom and taking a long time. I mean, what can ya do? I flushed about 5 times (seriously) and walked out a little embarrassed. I'm sure they heard every flush... lol.

Worrying about every single health thing is stressing me out! There are so many things online and Fibro symptoms intermingle with everything it seems! :( I've got kidney issues, dermatology issues, inflammation, IBS, and the list goes on and on...

When we got home earlier my roommate was still feeling ill from this morning. That makes 3 of us under this roof sick. He is now at the ER. A month ago he had his gallbladder out. Wow. What is going on? Are we all on this planet just going to get progressively worse until Jesus comes back?

Speaking of Jesus I explained Christmas to Mylie. It was nice. I'm not sure if she grasped it all but since she loves the Lord already I am not so worried. We planned to make a birthday cake for Jesus but I forgot to buy cake mix.

Fail.

Oh! Back to my roommate. So he's at the ER and his car also got stolen. Yup. I know.
Luckily he and A found it and the people who stole it took sunglasses and change and that's it. Weird but also rad they at least left the car.

I was scratching like mad around the boil thing and saying to A that I wish it would go away. Mylie looked at me with those sweet brown eyes and said, "I will scratch it for you Auntie Janet." I swear that she is the most loving child I know. She says all of these completely compassionate things that stir up such immense feelings of joy. <3

I am bloated more than ever.

I can make all the grand plans I want but I cannot determine my health. I feel resentful that this is what I am now. Weak. Frail. Constantly needing aid. Having a new staph blister reminds me that I am limited. It reminds me not to trick myself into a sense of normalcy. I AM SICK. Does this mean that out theory is correct? Do I have some kind of bacteria (or it this MRSA) inside causing me to feel so sick? Staph causes chest pains which I've been having again lately (though fibro does too). Obviously the doxy made the staph infection go away and I felt a smidge better fibrowise too. Now I feel horrendous and I have another boil after a week and 3 days off of the doxy. I really don't want to get another yeast infection from antibiotics but what else can I do? Is this going to be the cycle from now on?

Bonus: I made it through today and I am okay. Worse for the wear but functioning. ;) Barely.

I have a new staph blister.

Yeah.

It was gone but since I had to stop taking the doxycycline to pay heed to the kidney/yeast problem, I guess the staph got giddy and came out to play again.

Just in time for Christmas.

I also still feel kidney infection symptoms and will return to PP on Monday to check that out.

AND... worst of all I have to go shopping today. Unless it's a bookstore I abhor shopping... with a passion.

BUT my dad wants me to get gifts for Mylie and since they are in NC that falls on me.

Grr.

This means a rushed shower and a stressful day. I guess this means I will be laid out all of tomorrow to prepare for Saturday and going to the family dinner @ A's.

My dear friend got me awesome Christmas loot, including a delicious brush. It feels so good on my scalp and that sensation alone caused me to cry last night. So few things feel good anymore. This comb actually feels like a light massage on my head.

More later.

I wish there was a magic button that enabled me to have freshly showered skin and be dressed in a few seconds. No muss, no fuss. It takes so much energy to endure a shower. Bonus? The hot water feels delicious and soothes sore muscles and weary limbs. The hard part is doing what I need to do and getting out. Today I started to get a Charley Horse. I used to get those so bad at night and every time (even in my twenties living at home) I would scream for my mommy. Not even kidding. The last time I got one so bad was the night of my going away party (though I still haven't gone anywhere so does it count? Ooh! Maybe it was the "going away" of the old me and the ushering in of the new? Pondering.). I was living at Simonne's at this time. She'd already moved in with her sister. So, I wake up screaming. And who is there besides me? Mylie. At the time she was still three. A sleeping, peaceful three year old and the crazy lady hollering at 2 in the morning. In the shower today I merely turned and it started to pull. Luckily I caught that sucker before it eclipsed into full on Charley Horse mode.
Whew. Close call there. It's really that serious.
I feel like my chest cavity is so fragile. It makes me laugh because how could it possibly hurt like this? It seems absurd. I had quite the frantic moment as I realized in horror that I don't remember the last time I felt normal. I wish I'd have known that was going to be the last day I would ever feel like my muscles weren't blazing, my insides individually screaming for attention, and like sleeping forever. I would have gorged out on all the foods that make me sick now. I would have walked miles for one last time. I would have went skydiving before I found out I never could again. I would have rode one last roller coaster.
I miss working. I still raise Mylie and that's a huge job, but I miss getting out there. I miss driving (this has been the biggest restriction on freedom! I don't have a car anymore and even if I did I would only drive every so often. I am much too jumpy nowadays and too overwhelmed by all the external stimuli.). I miss seeing the girls all throughout the week. I miss corporate prayer. I miss taking care of the parade of kids and being involved in their lives.
Staying in and living with fibromyalgia demands almost everything I have to give in a day. It's become my work. My task is to study it, learn it, figure out how MY body can be livable now, and set out to conquer this debilitating portion.
I cannot function at a "regular" job, but I was never really into that anyway. I spent the years 16-22 working feverishly. Two jobs at a time, management, etc. Climbing the corporate ladder and not slowing down at all.
Thankfully I started hanging out with Jesus and He showed me the joy of working for Him. :)
I was given a lot of slack about my choice to take care of kids rather than have an office job. I'm not sure if I chose it or if it chose me. I know that my passion and purpose is to love on kids/teens and see them get free from lives of abuse or hurt. God entrusted those precious lives to me. It was hard and yet I loved it!. It was much harder than any job I ever had, but it was easy too. Flawless. The kids and I fit together. It was awesome.
So now I am working on this blog for the 5 people (if that) that read it and support me. I am working on writing the book I've always wanted to write. Sentence by sentence. Slowly. I am typing even though my fingers ache and I feel like laying down.
The pain radiates all down my back. I feel everything. My legs ache beneath me, my neck pinched from holding up my head, and my shoulders and chest braving the perilous task of simply existing on my body.
I'm hungry but the idea of food is so not appealing.

Martha vs. Mary

I hate fibromyalgia. I hate the name. I hate that it exists. What is it?! What is actually happening to my body? No one knows. No one. There are so many holes. They haven't figured out the cause, though it has a lot to do with the central nervous system. What are the statistics for women having children AFTER fibro kicks in? What about the average life span of someone with this condition? I have no clue what is going on! It's all a gamble. And I just have to accept it all! I just sit here and feel miserable and try to work my life (haha funny since "life" now means being a hermit) around this monster that has stolen so much.

Fibromyalgia.

I feel like a failure as a daughter, sister, aunt, niece, girlfriend, cousin, friend, nanny, mentor/spiritual mom, and lover of Jesus. I am never going to be strong like I was. I will probably always have to pace myself. I still love working with kids, yet I know I could not do it everyday again. The noise alone would slay me, although the constant energy required would be a close second.

I miss being able to connect. I miss being able to hold things without my hands aching. I miss being someone my brother could look up to. That the girls DID look up to. I miss having energy. I forgot what that feels like. To be replenished by sleep. How long has it been since I had energy? I miss being strong, being strong, being strong. Moving my own furniture, lifting things, moving fast all of the time. Efficient. That's why I get so agitated when people move slow. Because I lack speed! I envy them.

I want to relax. I want to pause. I want to spare the people in my life from hearing about my ailments. How not to speak of it when it's all I see, feel, taste, and touch?

My prayer for a long time was for God to strip me of my "go go go" attitude. I was the planner, the coordinator for hanging out, events, whatever. I was "the" friend to talk to. I'm not boasting, but I enjoyed being plugged into so many people.

Now there is immense pressure to be the old me. People have flat out ignored that I have a serious medical condition, or else have gossiped about me behind my back wondering if it is real. It's getting increasingly difficult to be out. It causes anxiety galore and I cannot tolerate sounds at all. I am so easily overwhelmed.

I had an adventurous spirit. I had energy. I loved to laugh and have conversations. Where did I go? I am frozen behind this failing body and this mind that is slowing down and forgetting on me. I am 30 years old, but I feel 75 inside. My memory has gotten so fuzzy. I hide it and I don't pay attention to the fact that information is missing or messed up. If I think about it I might freak out. Sometimes I almost convince myself I don't have fibromyalgia. Like it was a wrong diagnosis and it was really something curable, and I'll be healthy again! I am confused about being sick. On one hand I am at peace with it and I am trying to find a more fulfilling lifestyle with the condition. On the other hand I am so full of grief over the health I thought I had. No matter what- good or bad- I had my health. Now I feel off kilter. No health is a big thing.

I see this barren, dry, brittle season of my life making way to something colorful and teeming with life. Right now, however, I am so full of anger and sadness. Is fibromyalgia real? How long did it lurk in my body waiting to manifest itself? Was it there when I was a little girl reading scary stories books or playing Barbie's? How about when I got my first job or moved to Georgia?
It seems as though my life before all of this was merely a trial run. I moved fast and did a lot. I know my past has prepared me for this. Today I stared at my reflection for a long time. Who am I really? Past the external- who am I?

"I defend you. I protect you." The familiar love of my God washed over me. I am in a hard place. There is no magic pill that will make this go away. Until the day Jesus heals me or I die, I have fibromyalgia. BUT I am not as alone as I feel. My Jesus is with me. He loves me. He has a plan that is in effect even today as I feel angry and sad and like I will never be okay again. Being in this state of constant pain and fatigue stirs in me fierce prayers for people who are in pain. It increases my compassion and unfurls prayers of desperation over those in my sphere of influence that so need healing or the glory of knowing their Savior. That I can still be used by God despite my condition is humbling. An ache fills my chest to the brim as I realize that only here in pain and confusion and heartbreak can I truly know what it feels like to be broken by illness. The burden on my heart is to see people set free from Cancer and chronic illnesses and pain that modern medicine cannot fix. Even if I am sick until my last day I pray that I will give myself continually to Jesus so that others may be set free from their physical and mental captivities. Lord, please continue to strip me of my own flesh. Use me for your purposes alone. Take my fear and pain and use it to reach others. Here I am learning to not only sit but marinate and REST at your feet, Abba, and to let the frantic pace of the world around me become white noise. I look to my past, to all of my glory moments and I grieve that loss. That person I used to be, but I welcome who you are making me out to be. I am scared but you love me God. You have blessed me to have a fighting spirit. I won't back down. The nightmares I've been having, the enemy trying to take me out... I say no to all of that. You can handle my grief. You can take my confusion. Everyday I want to stay in bed. I'm so tired, I'm so in pain... blah blah, but I make myself get up and I live.

I LIVE.

You did not die for me so I could sit here defeated. You died for me so that I might live. I look forward to the day that knowledge meets action and I will know exactly how and when to pace myself. I will find my now again. Fibro has misplaced me, but I'm still here. I must adhere to my limitations and not get caught up in the rat race again, but I am alive. I would not wish this condition on anyone. Cancer patients have said themselves that fibromyalgia is worse. Wow! Can you believe that? Cancer patients!

Recent happenings:
-Last week I started getting bad leg cramps again. One night Mylie was staring at me. "Aw poor Auntie Janet. I wish I could do something to make you feel better." The little love proceeded to wet 2 paper towels and put them on my leg that was cramping really bad. I swear that child is full of the Holy Spirit already. She loves people and she is so compassionate. I love teaching her and watching her become a delightful person.
-Chest pains.
-EVERYWHERE hurts again.
-My skin hurts worse than ever. I can no longer wear shirts that cuff on the sleeves. It feels like a mild sunburn. When touched on my back or arm it hurts for at least 10 minutes afterward. :(
-Incredibly bloated. IBS has been insane.
-On the 17th I woke up and knew the nausea was going to give way to vomit. Finally. It's such a teaser! Everyday with the nausea (especially with the recent kidney infection). I threw up about 4 or 5 times. It wasn't violent like before, it was actually slow and the texture was creamy. Gross.
-My left hip is going ballistic (that's the side with hip bursitis).
-Sleep has been very interrupted and uncomfortable.
-My body is super stiff again when I first wake up.
-My mood has been quite unpleasant. The lack of sleep, pushing myself to be out over the weekend, and the recent cold have lent themselves to a very exhausted and overwhelmed me.
-Chocolate and soda are my enemies.
-I LOVE reading blogs where people share about fibro. I feel less alone.
-I am so thankful for the family and friends that have stayed despite my condition. Counterfeit relationships make themselves known real quick when one is unable to perform as they used to.
-Having people come and visit me is one of the greatest gifts. :) I'm done for a few days afterwards but it's precious to have a few hours to laugh and have fun without going out into the overwhelming bustle.

Seriously all I yearn to do is lay down in bed all day and not move ever again. I would be happy to simply sleep for 8 days straight. That's not going to happen. I WILL get up. I will shower.

That's the most laborious task. To get undressed, shampoo, condition, shave, and soap up and off. Rinse. Wrap hair up in towel. Dry off. Blah blah.

I must move slow. No more quick in and out. I used to call my morning showers "business." Meaning the morning shower was a to-do and if after working out or whatever I took a second shower that was for leisure.

Yes, I said business. Like I said I've always been efficient.
Now it's a HUGE source of energy to complete what was once a simple shower.

Make-up and blow drying/curling/flat ironing my hair seems like such a chore. I make myself do it (If I feel so crappy I at least have to look "normal" on the outside), but now that my hands seem to ache constantly I'm not sure how much longer that will occur.

Sometimes I feel like "own it girl." I see I still look like me even though I am a stranger to myself these days. Most times I feel like I must be deteriorating on the outside too. I am glad for the days I still desire to "sizzle."

I wonder: How do others see me? As a sick person? Am I disgusting?

My body is so bloated. My face too. I shrink back. How do I explain it's the fibromyalgia? That I can lose and gain up to 10lbs. in a single day. It's hard, especially since I can't work out. Everyone says to work out and that it'll hurt at first but to push through. Pilates is out. So is walking for a lengthy time. I am looking into yoga and once it gets warm I will utilize the pool again.

I miss working out.

A LOT.

I fumble around so much now. I have decided I cannot handle using a purse anymore. it's too hard to hold one, and my hands seem to fail me repeatedly. I'm not sure what I will carry. My mega comb has to come everywhere with me so... ;)

Mylie has taken to bringing her purse and little backpack too, so that's a lot to keep track of. Easier to eliminate my purse.

I'm just rambling now. Until next time.

My own shadow makes me jump in complete fear.

The last few days have been hellish.

It's a blur right now...

I remember going to bed Thursday and waking up every few hours...

same thing on Friday, except it was a few times every hour... and I had bad dreams...

So by Saturday I was wrecked absolutely.

I made the mistake of thinking I could handle being out.

I went to church and was "fine" until midway. Then my steam ran out and I dragged through the chaos of In and Out Burger and a movie.

By the time I got home I was drained of everything. EVERYTHING. I was in a bad way mentally and also physically.

I had bad dreams that night.

Last night I continued to have bad dreams. It was the third night in a row.

I've been feeling so depleted. Wow. I feel a new level of fatigue (who knew there was another one?!) and the fuzzy haze clouds my eyes again.