Thank you, Amelia

During a recent episode of Private Practice, the character Amelia was taking out her anger about her life out on another character... again. Amelia had gone down the road of drug addiction and lost the love of her life as a result when he overdosed. Eventually she found out she was pregnant with his baby, but because of the drugs the baby was developing in her womb without a brain. During the time of the drug addiction she lashed out at all of the people who love her during an intervention, in particular, her ex sister in law. Understandable, after all, she was on drugs and unwilling to admit she had a problem. Eventually she did end up getting help and all. Let's take it to this recent episode... the ex sister in law has finally been blessed with the child she has wanted for years. The child she was unable to conceive, even with fertility treatments and whatnot. So this character is soaking in the joy of this dream come true. These two women are close, and in another fit of self-pity Amelia once again lashes out. She is feeling sorry for herself because her baby is not going to have a healthy, happy life. She will instead donate the baby's organs after she delivers it. She tells her ex sister in law that she hates her, and some other not so kind things. Yeah, real charmer.

I understand the heartache of knowing that the baby you love, the baby inside of your womb, the baby you created, will not live. I have experienced this loss. I know the pain, the feeling of guilt. This isn't about that. This is about the fact that as I sat there listening to this woman (albeit a tv character) go on and on and on, and blame everyone else for her pain, I realized how very ugly self-pity really is.

Now, during these last few years I have done my best (many a prayer here!) to never ask for pity. To never feel sorry for myself and what I go through. I have most definitely been sad, been furious, been depressed and in a rage even. I have not wanted to exist at the darkest moments, and I have felt low, low, low to the ground. In all of that I have felt repulsed at any idea that anyone would feel sorry for me. At times that has been to my detriment, because I have forced myself to keep up with those around me. I have definitely come a long way.

In fact, it was while watching Amelia freak her freak, that I realized fully how unattractive that behavior is. To blame others, to be bitter, to expect the world to bend to oneself because of hardship.

No.

Fibromyalgia is real, and it is happening to me. But it is also happening to those around me. To Aaron, to my parents, to all of the people in my life who have witnessed my mood swings, my limitations, my frustrations. Sometime last year I made it a point to tell Aaron that I am so grateful to him. For learning about this thing with me, for sticking with me, for being there no matter what. That this is happening to him as well, being the one who is with me everyday. And it made a difference. That was the first time I realized that I couldn't hoard all of the feelings that come along with illness. Sure, the actual illnesses are happening TO me, but the effects of those illnesses cascade down and involve everyone who loves me.

I am transcending out of depression. I have a balance in my spirit (thank you Jesus!) that I have not had since 2010, if that. I won't say I never have discouraging moments, but they are far less frequent. I know I have not fully accepted this yet, but I also know there has been so much progress. Much more then I ever realized. And truly it has been one moment at a time. This episode was just another teacher.

So thank you, writers of Private Practice, and the character of Amelia. Thank you for reminding me how gross and unattractive self-pity and anger is. Thank you for reminding me that selfishness is blinding and so opposite of who I am called to live in Christ. With or without illness, this life is not about me. It is about the Jesus that I love with all of my heart and soul.

I believe the most important lesson I have learned (and continue to re-learn) with illness is that we have to be pro-active. If we want to feel well we have to take our medications everyday, and not make excuses for why we don't. We have to reach out, and be unselfish with our time and our kindness with other people (especially others in our same boat). The world does not revolve around us because we are sick, and expecting our spouses, parents, boyfriends/girlfriends, and friends to take care of us is unacceptable and selfish behavior. Help, yes. But to expect someone else to do the things we know we need to do in order to manage our illness is so ridiculous. We have to take the steps to want to help ourselves, instead of curling up in a little ball and crying miserably that no one understands. That may be true. Fibromyalgia is hard to understand, even when you are living it. But those people, and many others, will never know about it unless we speak up. Unless they see us trying, see us living despite our disabilities. I would be lying if I said I never had a day where I cry, or a day where it all feels impossible. When the pain and fatigue is screeching it can feel like the road ahead is impossible.... but it's not.

We need to fight back! We need to persevere. We need to take responsibility for ourselves.

No curling up on couches expecting people to feel sorry for us. No making excuses for why we can't take meds, or attempt exercise, or eat better. Those are lies, because we can make wiser decisions. Will those things heal us? No. But making those choices make a world of difference.

Pro-active or self-pity?

Only you can choose.

I have been getting into the practice of taking deep breaths. I never have before, unless at a doctors appointment and they've said to do so. It's very relaxing and beautiful. You should try it sometime. ;)

The Fibromyalgia Crusade

A couple of years ago I was semi-newly sick and desperately trying to find out about my conditions. I would Google late into the night, hoping and praying to find some answers. I had no nearby friends going through Fibro and on one particular search (who knows what) I stumbled upon http://chroniclesoffibro.blogspot.com/

This began a series of me pouring over each post and feeling so fantastic that someone out there got it! Quickly I linked to http://www.facebook.com/FibromyalgiaFunHouse and
http://fibromyalgiacrusade.com/Home_Page.html. It has been amazing! Where there was once loneliness and isolation came community and real, life-long friendships (I'm sure) with some wonderful men and women out there. The internet is a vast place, and I am beyond thankful that it has become a place to meet and unite with other precious people enduring.... no, surviving, what we go through.

I would encourage anyone out there who has yet to find a support group to come and be a part of the Fun House. ;)You are not alone, my friends. Not by a long shot.

All that to say, today I got my Fibromyalgia Crusade baseball tee and I love it!

Order one today while supplies last: http://fibromyalgiacrusade.com/products.html

A literal LOL.

After dinner my parents and Aaron headed out back to have their cigarettes (I am allergic so there is no love lost here. Blech is my opinion.) and I stopped my adoration of the newly sprinkled blowing dandelions to come back inside. As a joke I pressed up against the window and gazed sadly as they all hung out. My dad laughed and had Aaron take a photo.

Last night I stopped taking Melatonin, which I have taken nightly for at least a year, maybe two. I heard from some friends that it is a hormone and so I did some Google searches and found out that with long-term use it could affect fertility, reproduction, etc. So this could be contributing to my lack of menses for 6 whole months. I have had insomnia even with the Melatonin for a few nights, so it's not like I will be missing out. It was a couple of nights ago when I lay awake until 8A.M., after having taken 7 (yup, 7) over the course of several hours, that I decided to just say screw it and try to start finding my own balance again. Let's face the facts, insomnia is a major part of Fibromyalgia. MAJOR. So is restless limbs. I lay awake last night, trying in vain to fall asleep, yet every single time I did, my legs and arms would jerk. It's so hard to explain, it's like bugs crawling inside the skin, and it feels suffocating at the same time. VERY dreadful and uncomfortable. So, that's where I am at right now. Attempting to find some balance without Melatonin.

I have also been feeling the springtime allergies, and the whole host of other symptoms that come along with this sickness. I have attempted some calls to nearby clinics to see about free services as I await the decision of my Medicaid/SSI/disability appeal.... and I realize how lucky I had it in California. Sure, social services was no picnic (ever), and all of that paperwork was exhausting, but I had FREE (completely free) emergency room services, doctors visits (allowing me to, after several months, have a GI, ob/gyn, ortho, dermatologist, and a primary- who yes, sucked, but I still had one), and prescriptions. Can't beat that! Of course, the Fibromyalgia clinic came out of pocket, as well as all of the supplements, but the other stuff being covered was such a huge blessing. Unless one is impregnated here you might as well curl up in a corner and wait it out, cause there is no special circumstance to be seen.

I've been feeling more in balance emotionally lately. I realize that SO many people I interact with on a regular basis are content to marinate in negativity. I'm not. I kind of settled into it for awhile because I was depressed... wait, did I just say was?! Either that was a slip of the keyboard tongue or perhaps I am moving on to a different stage of grief... and because I had absolutely no energy to try to be the positive one. Online yes, to others, sure. But for myself? Nope. I just felt defeated and overwhelmed. All of the stuff that hit from the end of 2009 to 2011... death of a loved one, losing my job, my car breaking, losing my identity to sickness, moving 3x in 2 months, all the drama with Mylie and the custody stuff, not being treated for Fibro, being poor, moving again but this time cross country... it really effed up my body and my spirit. It took at least 6 months to reach any sort of equilibrium after I got here, and it's not all roses and unicorns right now, but it is infinitely better then it was before. I'm even getting bubbly for the upcoming trip! :) Most importantly, my spirit is coming back. My center. My balance.

Know why?

Because God never let go of me. Not once. And I am so thankful.

Well, the limbs are starting to feel restless again. It really does feel so terrible. Maybe I'll take a quick, short walk to see if it helps.

<3 Peace and love, my friends.

Awareness

Where to start?

I haven't felt much like blogging lately, and wrote several posts only to delete them shortly afterwards. I also made this blog private for awhile and then realized that wasn't very fair. Had Holli deleted her blog I never would have stumbled upon it in those dark, dark nights of 2010. If Leah had deleted her blog, I would not have so much information
and a whole community of Fibro sisters. If I had deleted mine I never would have met Alex. Sometimes I feel like what I am sharing on here is insignificant. I wonder if people even read this and I feel overexposed and nervous about sharing so many vulnerable things, but now I understand that all of that doesn't really matter. What matters is sharing what God is doing through my sickness, what He is teaching me, showing me, purging off and out of me. I should never be ashamed of that. How else can I claim this verse?

But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.
2 Corinthians 12:9

It is only when I face my own limitations, my own fears, my own flesh that I can fully know the full extent of His love and mercy spilled into my life.

So much of sickness is self-condemnation. Guilt runs on replay as my limitations take over. I have been asked if I have ever tried to push through it? Yes, everyday. But here's the thing friends, you cannot push through a defunct central nervous system and a compromised immune system. You can't. I do not have the luxury of deciding what is going to affect my brain and my wiring. ALL of it contributes, overwhelms, takes from me. To live in a body that has no filter for what it takes in, to hear every single sound, see every single movement with no sensor to remove what is unnecessary, to live 24;7 in fight or flight... it's not a pretty world folks.

And here is what I realized yesterday as I drove and talked to God. It's big, are you ready for it?

I am not the selfish one.

Can I say that?

Yes, yes I can. After two and a half years of feeling like I am failing everyone around me, letting so many people down, being criticized for my disabilities, having people feed lies into my spirit.... "you've changed," or "you're no fun anymore...." all of it... I felt like the blinders were ripped off in an instant.

This may sting.

I am not the selfish one. They are.


*
self·ish adj \ˈsel-fish\

Definition of SELFISH

1
: concerned excessively or exclusively with oneself : seeking or concentrating on one's own advantage, pleasure, or well-being without regard for others
2
: arising from concern with one's own welfare or advantage in disregard of others
*


Do I live that way? The definition of selfish? I had to ask myself that. I definitely have selfish behaviors, selfish moments. I am human after all. I fail daily. I sin without thought, can be stubborn, have fallen into pity many a time.... but selfish? I don't think so. Instead I kill myself oh so slowly by trying to be who I once was. By trying to be the pleasing daughter, sister, auntie, friend. I deny my physical needs more often then I respect them, because I am so busy trying to make everyone else happy.

Isn't that selfish to expect, need, demand from me what I do not have to give away? Isn't it selfish to mock me or roll their eyes because I can't be around a lot of noise or activity? Isn't that rude to me when they literally ignore what I say, or when they step on my fragile boundaries with their heavy boots?

I have to be responsible. I have to be verbal. I have to not give in because I feel oh so bad.

It takes so much more strength to be honest about our own weaknesses.

What is happening now, inside of me, is transformation. More of it. Always. Ever. I have to look at people pleasing tendencies I may have carried my whole life, I have to examine the guilt that rages throughout my being.... only secondary to the guilt I carried for YEARS after I lost my baby all those years ago. I have to face humiliation EVERY single time I need to use a motorized cart at Food Lion, every time I have to mute the television in order to listen to someone talking, every time the clock chimes loud and Aaron mutes the TV. I have to listen to continual criticism and advice about MY sicknesses, my lifestyle.

Here's my glorious realization from yesterday....
I am not the selfish one, the healthies who push me are selfish. They want me to fit a mold I no longer fit into, they want me to be better, they want me to be okay for them. And I can understand that they want what's best for me, they want me to have functional lifestyle, they want me to feel better, they love me and want me to get out of this. But here's the thing: I DIDN'T CHOOSE THIS.
This isn't something that delights me, or something that I seek out. This is something that is happening TO me. I have tried to pretend this isn't going on, I still have huge moments of denial, especially lately where I try to "rise above it" and think that I am not sick, but for the most part, I was an active person....

I mean, I went walking and did pilates, and worked with children and had friends and worked in ministry... this isn't to boast of the things I did, this is to say that lifestyle was far more comparable then staying at home twiddling my thumbs and reading books. I can glean things by staying at home, but the point is that it sucks to be ill. It's not something that's fun, it's not about attention. Who in the world wants attention for being sick?! It's negative attention. Who wants attention for not feeling well and ruining everybody's good time and having limitations? I don't want that. It's disheartening and disgusting to me. I feel like I have to cultivate this strict standard of living for myself so I don't freak out have a flare and all kinds of serious repercussions. And that is why I finally realized that they are the selfish ones. This is not pleasurable by any means. Literally every day I wake up expecting to be my old self, and not even emotionally, just in the physical sense. Let's just concentrate on the physical sense. I am waiting to wake up and have the strength that I did. To be able to manage a staff, to be able to work long, grueling hours, to lift boxes, give children piggy back rides, and go to church and jump up and down and sing and delight in worship, to make friends wherever I go, and go to amusement parks and bungee jumping and sky dive. I am expecting to do those things. To go to the Philippines again and go to Europe. I am expecting all of these things, and that's not bad, but it's quite unrealistic because I am not that same able-bodied person, and I think I have a stigma against my own self being disabled. This is supposed to be the prime of my life. Where I'm past the wandering about that is the 20's, the time where I am established and I'm supposed to be doing things I enjoy... and when people ask me insensitive questions like, "do you want a nanny job?" or "do you want to work?" or "have you tried this or that?" it's like, really people? I am the one dealing with it. I am so pro-active. I am so against being a stigma, being a sickie... and it's to my own detriment. That is reality, because I will forever and a day advise fellow sickies to take care of themselves, but I hold myself to this incredibly high standard. I think a lot of us with Fibro do that. We're the type A's and we give and don't stop, and it becomes this catch 22 because you have this strong willed, emotional, effective person who is completely unable to do the most basic of things sometimes, like lift a plate or have energy to take a shower or go on a walk, and then there's all this funkiness that comes with that, because you want to have the same lifestyle you once had. The scenery is moot. It doesn't matter where you are, it's about health. It's about the fact that we are sick people, and not in the way of "oh pity me, oh feel so bad that Janet is sick and can't do things" and blah, blah, blah... That is not what I mean. That is far from what I want.
It makes me sad that people who know me would look at my life and think that I, in any capacity, am loving this journey. I'm not. I love gleaning new insights that the Lord deposits in my spirit, I love meeting other people going through the same thing, but the physical part of it? There is nothing pleasant to me about staying home every single day, about being the kill joy when someone wants to watch as a movie as a family or have dinner together or conversations, or even to go to Target. I want to be able to just, on my accord, without having to pay homage to my body and the physical ramifications, be able to pick up on a whim and just go and do things.

People are selfish. They have complained about how I am moody or tired, and it's like DUH! Wouldn't you be moody? Are you moody when you have the flu, when you miss work? What about these Facebook statuses I read about your runny nose and your strep throat... you're sitting here bitching (really) and complaining after a day or a couple of days, but you're not in a body that is sick for years with no end in sight. You're not in a body that is always fatigued no matter what you do, that is not replenished by sleep, you are not in a body that works against you every second of every single day. Is there bitterness there?

Yes. There is sometimes. I believe in telling the truth, and a part of that is admitting there is jealousy there. Especially people who take their health for granted. It's annoying, but I also understand because I did too. I took my health for granted, even when I had vertigo and tendinitis or migraines... you just can't comprehend it until you are going through it every day like this. This is hellish in it's own way for anybody who is sick. Anything that is chronic. Anybody who has something so severe, that never leaves you, that is always a barometer for how your life is going to go, its annoying and suffocating and feels like a prison and you have to really, really, really be able to be self-aware. You have to look at your flaws. You have to look at everything basically and you have to weigh your life against whether or not it's worth it to have the pain. And it's not that you don't care about people, it's not that you don't want to be an active part of the community or church or anything, it's the fact that you are sick.

I am sick.

I have to tell myself that because I don't always believe that. I downplay what I'm going through.

I do have to be a little selfish sometimes. I have to protect myself. I have a compromised immune system and a compromised nervous system. I realize that sounds incredibly vast. I wouldn't even know what that means either, but I'm going through it, so I had to do research. The truth is I don't even fully know, there isn't a whole lot of information about Fibro and what causes it and what it is actually doing and I've got these viruses and stuff, so you have to put a lot of time into yourself, into learning, into accommodating the illness. Think about when you have a visitor you aren't all that peachy about it, you clean the bathrooms and get everything ready but it's to accommodate a visitor that you have no desire to even hang out with. That's how it feels to have Fibro. I have no desire to hang out with this thing, no desire to deal with it, no desire to endure it, but I don't have a choice. I have to because it's happening. I've tried denial and mind over matter. You can't ignore your nervous system, that's what makes you you, that's what makes you up. That's your brain and body function, that's Fibromyalgia.

A patient has to do what they need to do, individually, to take care of themselves. And this is my best. I go on walks when I can, I make little tasks for myself. That is how I am being strong and I'll tell you, the spirit is hard to break. With sickness it's easy to break down, and easy to want to give up. I have completely wanted to give up at times, but the thing is, that's a fleeting emotion that comes on the worst of days. The reality is that my spirit IS strong, and the Lord is in me, and I am full of His strength. I get up everyday, and for me, that is a huge thing. I'm not there yet- I haven't fully accepted this, but I'm on my way. I can feel it. Sometimes I cycle through anger and denial and bargaining and depression, and I have to give all of those things, all of the time back to God. Over and over. I have to because that's where my faith lies, where inspiration comes, where my strength comes from... relying completely, wholly, 100% on on the promises of God in my life. And I'm not talking about promises about marriage or worldly issues, I'm talking about the promise that I am paid for, that I am ransomed because of His blood, that I am totally reliant on the one who saved me! It's not about a worldly or temporal vision, it's about an everlasting vision, that this pain, whether I live on this earth for 50 more years or 2 days, I have got to learn how to live like this. Without any self- pity or depression, accepting that this is my reality. And I'm not there yet, but I believe that everyday God shapes me and shows how to keep walking the path to it.

Life.

There are so many lessons everyday and God is so faithful to remind me that I am not in this fight alone. 90% of the time I do feel alone, just me and God but the reality is that He sends so many people to help me through this. To challenge my fleshy heart, my entitlement, my agenda. There is such a beauty in being sick, and these aren't just trite words, if I were to die tomorrow, I would consider that I had a very great and blessed life even with Fibromyalgia. Being sick has opened up my heart and mind so much, in a way I just wasn't capable of before. And I'm not saying sickness is the only way to this, but for me, my life.... for my selfishness, my worldliness, my old viewpoint... it is what is stripping me, refining me. I thought I was beyond this because I am a believer, because I went to church but I still relied on my accomplishments, my status, being a leader, a spiritual mama, a nanny, being a type A. I wore my achievements as a crown, and my only crown can be Jesus and that is what Fibromyalgia is teaching me. I want to say I have this mastered, but I don't and the reality is that I probably won't for as long as I am on earth, but I see my life as significant. Maybe not to anyone on this earthly plain, but significant to the God of the universe, the God who chose me, and He knew I would get Fibromyalgia, He knew I would be sick and that I wouldn't be able to work, and He still picked me anyway, to be a part of His kingdom and to be a part of His family. There is work He still wants to do through me, and so I have to continually give this back to Him or else the bitterness does get too big, or the depression does get too big, and I do push myself. Sometimes that's good, and sometimes it's not so good. It's not healthy to push past your limitations. I have to be able to say to myself "you are sick. Janet, you are sick. You have a problem with your immune system, you have a problem with your nervous system. You are not crazy, you did not do anything wrong." And that's the thing, just like when I lost my baby, I feel like this is my fault. That I asked to be sick or made a choice or did something wrong, like I have to atone for it. But that's wrong, because Jesus already atoned for me on the cross.

So I'm not the selfish one here. I am learning how to be more like Christ in my sufferings, I am learning how to yield my flesh and desires and my life to Him, and they can't just be words or songs that we sing: "Lord I give my life to you, Lord I love you, Jesus lover of my soul, take my life...." We can't sing those things and then not expect to not really give our lives away, because that's what being in a relationship with Jesus is. It's giving away everything He has given us. And I want to be that person on my best day, and on my worst one. In a happy season, and in a brittle one like now. I want to be a woman that is after God's heart and if that makes people not like me, makes people talk about me, makes people judge my life, then so be it. I have to gain strength from that, from remembering that even Jesus was not accepted in his own hometown. He was mocked, and people belittled Him and He died this bloody, violent death so that I wouldn't have to sit here in condemnation. I carry this condemnation, this hellish guilt at being in a sick vessel and I want it to be broken off. So I have to yield and it has to be everyday, and I have to remember that I am not selfish. This is self-preservation and everything that I have to do in order to live is what I have to do. At the same time I have to also give away of my time and my talents and my love, and I think more then anything, I am understanding that we can do for people... I'm a doer, a giver, even with Fibro, but what I am slowly learning is that loving people is so much more imperative then the doing. You can't do for people unless you actually love them.

I don't feel sorry for myself. I don't. I may cry and I may sulk about Fibro and sickness and loneliness, but I don't feel sorry for myself because I have the One in me who is above all of this, and so my moods and my little fleshy meltdowns are nothing in comparison to what He does to a heart that is ransomed for Him. I pray that I will be open no matter where I am in life. Honestly I believe, God did not make me sick, but the choices I was making, running myself ragged and trying to be everyone's everything, that's not the life He had for me. Slowly am learning to accept that. Each day is a process and I am just learning.

That's my big revelation and it's pretty freeing...

I'm not the selfish one and this isn't my fault.

I'm not the selfish one.

People wanting me to be a certain way, people refusing to acknowledge my reality, people putting me down....

I can't be responsible for that.

I am sick. I am sick. I am sick. I am sick. I am sick.

My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26

"You will not have to fight this battle. Take up your positions; stand firm and see the deliverance the Lord will give you, Judah and Jerusalem. Do not be afraid; do not be discouraged. Go out to face them tomorrow, and the Lord will be with you.’”
2 Chronicles 20:17


I was able to carry my own library books yesterday. :) It's the little things.

P.S. I have this lump on the left side of my neck... poor left side. Everything breaks down on that side, from ear infections to hip bursitis to osteoarthrotis/tendinitis. It has been there for months, and it gets bigger and then small again. Lately the neck pain has been off the charts and the lump is bigger. Please pray it's nothing.

Humbled

Had some sweet, sweet revelations today and to cap it off I got this amazing message of encouragement from an old friend. It has me a little stunned in the best way possible. Because it's God again, showing me His promise, showing His love and faithfulness in so many millions of ways. My heart is so tender tonight.

I don't know how or why God loves me this much. I don't even know what to say to her yet. I have to wrap my mind around the fact that I have been so selfish. I have even been selfish to delete my Facebook accounts and delete friends. I am a child of God. He is the reason why I am alive... not only by flesh and blood, with a heart beating in my chest, but also really alive, in Him. He is the reason I smell the flowers dancing in blades of grass, hear the songs sweetly sung in two ears previously half-listening as I went about 3 other to-do's at the same time. He is my reason. His love, meant to shine in the life of a believer. Not my life alone, but His.

I have been so greedy to hoard away all of this love. This vast, immeasurable love. It is so thick it comes in buckets, sheets. I write freely now. Unashamed. Aware that I possess it- THIS!-everything! It is loud and soft and tender and violently lovely. I can't escape the riches of His love.

I feel reckless and full of divine light and love.

Jesus.

Uncover me. Let me stand with a pure heart before you.

Mothers

From March 17, 2012

Today my mom wanted to take a video of me on her cell phone. I was slightly flattered and a little bit awkward. I am used to being the one who wants to record people. Scarcely does anyone record me. That happens when you grow up. Or maybe I spent so long taking a backseat that I just grew accustomed to not being the one recorded or photographed.... not being the one to shine.

It was just a regular day. Nothing special or out of the ordinary. Except I was wearing a headband. A headband with a burnt orange flower hanging off of it. I looked like a hippie girl.

I saw a look in my mother's eyes as she stared at that headband and her daughter, smiling, having just sat outside reading a book in the sunshine. Her daughter, who is sick everyday and only recently, her daughter who has started laughing again.

I knew inside why she wanted to take a video of me.

It's the way I feel about recording Little. The way I feel when I watch her color or count or speak grown-up words from little pink lips. Watching her discover life for the first time. I am in love, fascinated by those little eyes, captivated by that small human who taught me how to love just by existing.

It's how my own mother must feel.

How she has felt.

It's a love that is strong and almost too delicate to explain. I, for absolute certain, never once understood the desperate, rooted in, forever feeling of pure devotion to anyone or anything until I fell in love with that tiny child. She is not born of my flesh. Sperm did not meet my egg to create her essence, but God surely did knit her in my heart even before she came into being.

She is mine in any way she could be, except by flesh. I did not bleed and bear her from my womb, grunting and sweating with the pains of labor nor do I carry physical scars of flesh cut open to reveal her to the world.

But oh, how I have wept for her.

How I have protected her, cradled her in arms near my heart swollen with love.

A love so blinding, so severe
that it crushed as much as it filled up.

Never once did I need to record....

with fingertips, with eyes, with heart

until I knew how it felt to be a mother.

I now know that a mother's heart is wide and strong,

stronger then anyone else's.

I now know that birthing a child truly does not make one a mother.

A mother is...

time and love and teaching and raising and singing soft songs in the night, rubbing soft baby skin and soothing and adoring and everything worth it because you want that child to know love and be love and give love

and that ache in the heart....

the one that never leaves. The one that calls and demands an answer,

"child of mine, where are you?"

I feel so fortunate to know this love.

As the giver, but

as a receiver too.

Could I have loved Little so?

If I had not been rocked and comforted and laughed with and adored?

If my own mother did not stop

that pause of love
just that headband and that sunshine pouring in through the glass,


nothing extraordinary
highlighting that smile

to record me

with eyes lit up

as I discover life for the first time?

Recovery Flare

My body one big charley horse, limbs aching, head spinning, eyes begging to close. There is NO energy. None. Not even the baby energy that springs up on the rare days.

This is "recovery." That is a nice way to say "payback." This is my payback for thinking I could act like a normal yesterday.

It was worth it... at the time. I had 6+ hours of alone time. I went to the library and picked up 16 library holds, stopped and took photos of so many delightful trees and flowers, went to the bookstore and read magazines, went to the movies by myself, went to do a few errands. I listened to music and worshiped Jesus in the car, and interacted with numerous people. I walked, not using the handicap space like usual, electing to walk the extra distance instead because it was a "good" day.

I felt so triumphant last night when I got home. The fatigue was already seeping in. The bleary moody that comes after doing... well, just about anything. I did it! I went out, on my own, and I had fun. I felt like a normal, like a real person.

I know I am a real person. I know I am sick. It just gets to feeling sometimes like I'm not really living in the way that most people live. I'm not. That's just the honest truth. And I don't mind it most of the time. I am used to it now after a few years like this. But days like today it breaks me for a moment. Days like yesterday are rare. I maybe go out 7x a month, if that and usually the outings are brief and then it's home to "recover." Yesterday was my personal Disneyland.

I lay on the bed absolutely still. Muscles so tense, feet cramping, hurts to comb my hair, and the tears leaked out. Quiet moans of anguish as I feel fresh how much Fibro demands.

I am determined to find a silver lining in this... and so I choose to be grateful that I was able to go out yesterday. I choose to remember that this hellish day WILL pass and I WILL have another random "good" day.

This is hard, folks. It was hard at the beginning, stumbling blind in sickness and not knowing what was happening. It was hard each day in-between. It is hard now. The difference is now I know...

I know people will doubt me, doubt my sickness. It still hurts. I cannot lie about that. But I know now that what people think does not matter. It feels like it matters. I get discouraged. I feel defensive. I cry. I ponder if I am strong enough, if I am doing all I can within my means, if I am failing...

Failing at what?

At life?

At pleasing others?

I'm not sure. Both. All. More.

But I am the one who has cried, bled, hurt, ached, sweat, been prodded, been in public restrooms vomiting my guts out. I am the one who has not been believed, who has sat in room after room after room at some clinic or some hospital being told it was in my head, that I'm too young, being misdiagnosed, being told I have the back of a 60 year old woman.

I. Me.

My experience. My heartache. My tale.

I know what I have to do to live. I am the one who lives it.

I have researched, I have gotten treatment, I am the one taking a billion pills a day.

The most pleasing and glorious thing anyone can do for me... for anyone who is sick... is allowing the sick person to be sick.

I do not want pity. I do not want to be coddled. I do not want the world to revolve around me. What I would like is to be given the respect to be left alone when I need to be. The respect that I have an illness (a few in fact)and that my life is adjusted just so, in the way that I need it to be, so I can function on a daily basis.

It's not that I want to say no.
It's not that I don't care about you or you or you.
It's not that I want to stay in bed.
It's not that I don't care what you are saying.

I just have a limited reserve and I am asking you to respect that.

Today is a flare day from hell.

But it's still another day....

to breathe
to smile
to eat a hamburger for dinner
to be alive


Let me have my day.

Day 9 sugar free.

Super flare.

Weakness,
upset stomach,
eyeball headache,
night sweats,
aching limbs,
dull throb in legs and arms,
dropping things,
noises are mean,
neck pinched,
pain everywhere- even my elbows,
exhaustion all over.

Once Upon A Time & the
Walking Dead season finale is tonight.

Ooh, and Frozen Planet starts!

I could stay in a hot shower forever. Heat really is Fibromyalgia's best friend.

Today I have...

almost fallen in the shower

spilled toothpaste on my tee shirt

spit my toothpaste all over the sink handle versus the sink

tripped over the laptop plug

had random leg spasms that hurt when I walk

coughed a bunch

Happy Flare day to me.

Sunny Days

I usually feel like I must look a mess because I constantly feel exhausted and sick. I'm always in pain. The levels vary, some days are tolerable, some days are absolutely miserable, and others are actually darn good. It's a lottery everyday. I don't know what is going to be going on with my body until I wake up.

Lately I have been having migraines again, night sweats (waking up soaked through my nightgown), and radiating pain everywhere. Last night back spasms came to play and the migraine became a jaw, neck, back of the head, temple, and everywhere on the left side of the head pain. My eyes began to water and I felt oh so miserable. I took a couple of Benadryls and called it a night.

Enter today: I woke up super exhausted. That's usually the case, but some days are more severe then others. It was such a lovely day out. The sun was shining and the breeze was soft. I decided to go on a walk.

The picture above (has been removed) displays none of the pain in my body. Not at all. It surprises me. I can see why people are confused when I say how I feel. It really is invisible. This picture doesn't show how slow I walked and how it felt like climbing Mt. Everest (or what I imagine it to feel like), it doesn't show how I shooed Aaron on ahead because he has a normal pace and I have a slow one and how he was already around the block before I got to halfway. ;)And it most certainly does not display how every muscle in my body is on fire now just from taking a short walk. A walk I took for granted years ago.

The picture above makes me realize how strong I really am. How strong ALL of us fighting sickness are. No one can see our pain, but we sure as heck feel it.

I sat in the garage a bit ago and felt the absolute contentment of the warm, still air. I can't wait for summer. It is strange to say. I've always been a cold weather girl. I love the rain, the snow, the chilly nights. But Fibro likes the warmth way better, and I'm looking forward to that.

Now it's time to watch X-Men: First Class.

Have a good night, my lovelies.