Ghastly

ghast·ly (gstl)
adj. ghast·li·er, ghast·li·est
1. Inspiring shock, revulsion, or horror by or as if by suggesting death; terrifying: a ghastly murder.
2. Suggestive of or resembling ghosts.
3. Extremely unpleasant or bad: "in the most abominable passage of his ghastly little book" (Conor Cruise O'Brien).
4. Very serious or great: a ghastly error.

I think I am repressing things. I don't feel I am but then a night happens such as last night and I am not so sure anymore. Someone close to me complimented my appearance, but I immediately burst into tears. I knew... I KNEW... I looked like a beast. Sobs tore through me and a grief I haven't experienced yet came over me. My friend simply hugged me. He told me that I don't see myself accurately. I know he is right. I feel awful inside. Puffy, unappealing, gross, broken down (like a car)... so I assume I must display that on the outside. I don't feel like that a lot of the time but when I do I REALLY feel it.

I am battling with truth.

I KNOW I am not a beast. I KNOW that I am still me in there somewhere. I KNOW I WILL get through this, but geez Louise does it have to be SO very hard? The emotions come like a flood and before I know it I am blabbering like a mad woman. Things I don't even know I am feeling. I guess I am dealing with the grief as it comes. Day by day by day. It's the only thing I can do. This disease is so unpredictable. One day I feel confident again and full of life and hope. I make notes in my journal about the cozy cottage I want to live in someday with a huge comfy chair to read in, books scattered all over, hardly any possessions, no television, with my favorite quotes and scriptures painted all over the walls. I want my home to ooze of Jesus. To invite people into His presence. I have hope. Then the next day (or even the very next minute) I am crying or yelling or both and I can't seem to stop it.

People like to preach. I've found that out. People like to tell you what's what, even when they have no idea. It doesn't even have to be a believer. Everyone seems to have some sage wisdom that I simply must know. As if I am not proactive about my own health and need a little prodding to get better. Let me clear that up right now...

I AM PROACTIVE in a way you will not believe. We all are- those of us enduring this disease that cripples our entire being. We get up, we shower, we speak gaily with friends and family even though our hearts are racing, sweat is puddling beneath our sweaters, and we feel we may black out. We have the Thanksgiving turkey, we troop on and on and on to see doctor's who belittle us, we share our vulnerable hearts with people only to be judged for what WE are going through.

It's pretty brutal.

So I am proud as all heck to be a part of a movement(dare I say that?)that is putting a voice to our disease. I am honored to know and stand alongside these mighty warriors of fibromyalgia as we start letting the world know the truth about our battle. I believe The Fibromyalgia Crusade (www.fibromyalgiacrusade.com) is taking off and we WILL have victory. We will make our world aware of how debilitating this is, and we will keep marching on.

And as for me?

My pride would have me say I am fine, but that would be a lie. What I am is a work in progress. I am healing slowly emotionally. I am using my head to study all of my conditions. I am facing each fear realized and leaving it at the cross. I am changing, I am growing. I know I will make it. I know I will endure and find joy in the darkest of places because I belong to the One who brings light. I also know I must stop partnering with the lies. I have to stop claiming that "I am broken." That's just bunk.

I can do this. I am doing this.

But on the days when the tears flood and the confusion and anguish take over, I may need a gentle nudge. ;)

"A life compelled by the Holy Spirit cannot be stopped. Death may cause the body to cease from functioning, but the influence remains and may even intensify. Wow! Wooed by the Holy Spirit! Called by the Holy Spirit! And compelled by the Holy Spirit! Life is too short to not live with this compelling vision and tension. It is the tension of living by faith in Christ. Follow the Holy Spirit’s compelling lead. He is with you and for you. He is at your destination in His revealing power. Do not recoil from this rendezvous with radical faith and obedience!" (www.wisdomhunters.com)

That's My King!

Joy

From my journal:

January 27, 2011 (YESTERDAY)
Will it always be like this? Why do I feel like I am going to die soon? I feel like my days are final somehow. Right now I am convinced I am going to die this year. Is it just this Phil Wickham song- Heaven Song? Or is it just how I seem to "know" things sometimes way deep down. I am sad. I am already missing today. I feel like some things are being imprinted in my mind, in my heart. I feel so bittersweet as I watch tv at night, Mylie sleeping softly in her bed across the room- everyone safe in the cozy dim of night. Or sitting at borders and staring at the girls- so grown up and beautiful. Aaron-this amazing man. And Mylie- my beautiful little spirit child.
I am leaving those moments and I am so sad about that. Being sick allows me to know the quickness of life, the impending end we all will face in a way that a healthy person does not know yet. Obviously we all know we will die at some point, but being severely sick pushes the end closer. It makes every single thing so powerful. Every word, every day. The way the sun shines on my skin, Mylie's laughter, the tree outside that hangs bare in the winter. It might be the last time we ever see these things. I never used to fear death or even think about it all that much. I don't fear it. Jesus will be there and I will go home. I don't believe there is anything to fear at all. But somehow being so consistently vulnerable, having all of these parts of my physical body being attacked- it makes me aware in a way I never was. I break at the knowledge that one day everyone I love will be gone. I can't stand it. I am grieving. Whimpering like a little girl, slobbering on this notebook paper. I am so sad. Being so challenged health wise is so scary.
I'm only 30 so my weak body is trying to fight back, but what happens as I get older and my body weakens in the way all of our bodies weaken as we age? Then perhaps I will not be able to fight back so much. My organs and all that are barely hanging on now will surely not be able to combat Fibromyalgia in old age.

*At this point I was starting to get super anxious and sobs tore through me. I had to stop immediately and get into prayer. That led me straight into the presence of God. I squeezed my eyes shut and just cried. Wailed really. I just kept pleading, "Holy Spirit come!" Begging. And oh He came, my Savior. It was dark at first. I could feel the enemy trying to close me in, to give in to fear, to bow down. So I opened my lips and fierce prayers swept through me. I hadn't prayed that way since I got back from the Philippines. Rip roaring, powerful, letting the Holy Spirit stream out over the apartment. I took authority in Christ Jesus and got PISSED at the enemy. As He gave me prayers of power, I felt the light come. It was so beautiful, so good. I could only cry and cry and cry. Shaking with the light and the peace that only comes from being in the presence of God. I'm talking about blinding, beautiful, brilliant light that streamed all over me. Arms raised to receive, spirit open, joy coming in bursts of gold even behind closed eyelids. I could only sit there rocking back and forth in a frenzy, once again realizing how blessed and lucky I am to be called His. Not for some show of religion, not to warm a pew on Sundays, but to breathe in Jesus. To breathe in His sweetness, His mercy, His love, His everything. All pouring, pouring, pouring onto my head, my arms, my being and saturating me to the core.

Here is the entry I wrote after being in His presence. It is not edited, it is as I experienced. If you haven't had the pleasure of meeting Jesus yet I will sound insane. ;) I'm okay with that. The day I STOP being cuckoo for Jesus is the day to worry.

Here goes:

Oh my gosh. I just had the most intense time. The light was brilliant. It was so full, so radiating even with my eyes closed. It was overwhelming. I wanted more and more and more- I was drowning in love. But it was too much so He dimmed His brilliance only to suit my eyes. All I could see was light, all I could feel was God. Prayers shouted from trembling lips, sobs making me choke. The darkness eliminating as He shone on and on. My heart full, about to burst with His goodness. Breaking down as I realize the light I saw was only a tiny fraction of God's full brilliance. Wow.
Overwhelmed with His presence. The devil fleeing. Casting out all of the lies he has slowly deposited into me over the last year. Anxiety like a band around my heart breaking off, breaking open, breaking away. Your presence all over me. I am begging to stay in your brilliance, but I know it will overwhelm me if I don't look away. I never knew how bright you really are. Oh Jesus. The love. the peace. It crested over me like an impenetrable wall around us. Nothing and no one could touch me at all because you were covering me.
I am laughing. I am crying. Who am I that you would allow me to be with you???
I am giddy. Laughter shakes my whole body. Literally I am shaking and I cannot stop. I am so deliriously happy.
I can't stop laughing. Not hysterical, but pure joy. I haven't felt so happy in so long.
I had to pause for a moment. Just spent about 7 minutes rolling around on the floor laughing. I sense your nearness in a way I haven't in months. How is it with you there is always another level, God? I am humbled by your love once again. I've missed you so much and here you are. Oh Jesus, thank you for forgiving me for neglecting our relationship, for purposely passively shutting you out. Thank you for always bringing me back to you. Thank you that what started as me feeling like I was going to have a heart attack led to being in your shining presence. That it resulted in me laughing with joy and having peace again. Peace only by your spirit.
I am in awe once again.
My faithful God.

Come Alive- Deluge Band came on my ipod at that very moment. Perfect.



Thanks for reading!

I love this

Fibromyalgia



You ask me "whats the matter?"

...You say why do you look so grim?

I say it's just the usual, It's my Fibromyalgia again.



I'm tired and I'm achy, I can barely walk.

My muscles are cramping fiercely

and I don't even want to talk.



This disease makes me angry

I didn't ask for this!

I feel like a prisoner in my very own skin.



Even though I feel like this

I fight it everyday!

I'm not letting Fibromyalgia steal my life away!



©Tabatha Schulz 2010

Crummy

January 26, 2011

crum·my/ˈkrəmē/Adjective
1. Dirty, unpleasant, or of poor quality: "a crummy little room".
2. Unwell; ill: "I'm crummy and want to get better".

I'm in a mood. All sounds are making me want to scream.

I hate everyone and everything today. And if you are reading this and want to give me a lecture about how that is not Christ-like or that I "should" be this or that then do us both a favor and do not read this. Seriously.

I am in a horrible mood. I just snapped at my roommate and yelled at my best friend. I am in a horrible place. It's so hard to endure a day of simple chores and daily noise. The bathroom light that hums so loud, the numerous spills today, the way I keep fumbling on the keyboard, the way I am dropping everything, how my eyes are begging to close. Sweat builds as the heat from my anger comes over full force.
This life is hard.

I am tired of explaining and explaining and explaining.

**************************************************************************
I'm back. I had to take a break. A crying, "grr this is so freaking hard" break. Sometimes being sick is so entirely overwhelming that I feel I may just bust.



January 27, 2011

Yesterday went swimmingly until about 3:30p.m. when I could feel the fatigue settling over like a familiar blanket. Except it's not cozy, and it's not delightful. It's a pain. Literally. I apologized to my roommate, and to my best friend, and talked to Jesus about it. That helped. I also am trying to focus on the positives after I have a meltdown. A meltdown is good because it means I am processing and not burying the grief down anymore. It means I AM healing emotionally, and though I have a ways to go, I am definitely not standing still.

The week started off pretty grueling. I went to the ER on Sunday evening for continued pelvic pain. Once there I had another pelvic exam. It was more painful then usual with the vestibulitis, and when it was over I saw blood on the equipment.

Yes, I am bleeding from my cervix again. They could not tell me why (shocker), and all of the tests were negative. I yelped in pain as she pressed down on my pelvis and my stomach. I am still gigantic in that department. The inflammation only seems to be worse everyday. She told me to eat yogurt everyday to help fight against all of the antibiotics I've taken lately. It's called probiotics. I did not know we could grow yeast everywhere. I thought it was just a female issue. So she said eating yogurt and taking these probiotic supplements should help with the yeast overgrowth that may be happening.

At the ER I also had high blood pressure (again) but she said they don't count the blood pressures in the ER since we're in pain. Um okay. Since I have had slightly high ranges for months now I am pretty concerned. My primary doctor who is actually a nurse does absolutely nothing for me so I guess I will just enter into hypertension with no aid. The cuff hurt my arm very bad again, and also when they drew blood it left a bruise. Those 2 things serve only to remind me of how frail my skin and all has become.
The ER visit was not uneventful. I did get a referral for an ob/gyn through Sutter, but of course the doctor does not take CMSP, so I still have to go to the clinic. The ghetto, "oh patients get lost in the cracks here" clinic. The same clinic that NEVER gives me my test results until I have called numerous times over a span of weeks
Yeah that one.
I am concerned because of my cervical cancer growth past. It has not come back in almost 6 years, but somehow that doesn't comfort me now. I should not be bleeding every so often from my cervix. This has been going on since last April for pete's sake.
The good thing is that although the medical insurance I have now sucks, at least I have medical insurance for the time being. I was able to refill prescriptions and make appointments that I was supposed to have in December with my dermatologist, pain management doctor, and dentist.
I got a phone call from Planned Parenthood with some tests. She told me my cholesterol is a little high, as is my glucose. I knew that already but it was another reminder to start dealing with that. She told me to have a low cholesterol, no sugar, low carb diet. I was planning on it already, so that was the extra push I needed.
I used to eat that way, but then I got sick and all I seem to crave these days is salt and sugar. Primarily sugar. It's definitely a challenge to change my eating habits but I know it will help with the IBS and the acid reflux. I am supposed to exercise too, but since I can barely walk most days that will have to be a gradual thing. I tried yoga but my body is too inflammed. I don't know if that is due to the hip bursitis or the other unknown issues. On "good" days I do walk to the mailbox, and when it warms up I will utilize the pool again. For now my goal is to study each of the ailments I have and try to do what I can to make it better on my end. I have come to the conclusion that although I will go to see doctor's and get labs done and procedures, etc. that I am my only advocate for my own health. I must educate myself and do what I can to limit the pain. I don't like pills and all that anyway. I am more into natural remedies.
I do want to try this acupuncture place in San Francisco. A friend (www.chroniclesoffibro.blogspot.com) highly recommends it and says it helped a lot with fibromyalgia pain. I called a couple of times but no answer yet. I'm sure it's pricey so I more then likely will not be able to go, but it doesn't hurt to try. Speaking of which, I will be writing my sponsor letter this weekend for the Fibromyalgia Learning and Treatment Center.
I'm feeling pretty optimistic emotionally, and I am good spiritually. The enemy continues to taunt me with nightmares. I wake up drenched in sweat. I don't like that at all, but I cling to:

I will lie down and sleep in peace, for you alone, 0 LORD, make me dwell in safety. (Psalm 4:8)

Lately my feet and legs are always numb or aching. It feels like they are swollen but they aren't. Its the cold air. Not good for fibromyalgia. Yesterday was horrible. Today is more manageable. I slept a lot (of course waking up every few hours like usual but I was able to go back to sleep) for once and I plan to sleep a lot more today and tonight. I don't get replenished by sleep anymore, but it gives me a least a little zing to get through the day.

I am continuing to look for blessings in the small stuff. The small stuff is actually pretty huge. I was very dismal in emotion for a few months and to feel hope, to feel anything now is wonderful. Three lovely things happened yesterday. The first is that yesterday was the first day in weeks I was not nauseous. Amazing. The second was getting an email from someone I don't really know well yet. She is the sister in law of one of my best friends.

It made me cry. Thank you Kelly, and thank you Theresa for being a loyal, loving best friend. I appreciate you both.

The third lovely thing was finding out that my childhood best friend (since we were 12 years old) is sporting a Fibromyalgia Crusade key chain. I could not believe it. That is the most awesome thing ever. It's not about the fact that she bought the key chain (though that is so cool and if you are reading this it would be RAD if you sport one too), it's about being validated. It's knowing that someone else believes in this, believes in me. I am crying right now. It's such a lonely life- this fibromyalgia prison, and to know that I AM being supported and that fibromyalgia awareness IS increasing makes me feel like fighting that much harder. Thank you Monica. You will never know what that means to me.

All in all, I am doing what I can do each day. If it means I cry or yell or laugh outrageously. No matter what I am learning that I can do this... that I AM doing this. And that, my friends, is enough for now.

:)

P.S. Mylie has started to eat salame and cream cheese with me. She is astounding that four year old.

Shiny Sunday

This weekend has been... chill. That's the best word I can think of. I have done nothing but watch horrible television and veg. Okay, that's not entirely true. I still did dishes, laundry, and took care of Mylie but for just a little bit less then 24 hours I actually rested for once and it was glorious.

I spent an extended amount of time with Jesus which is always the best way to spend my time. It's been sunny and feeling Spring like (at least in the day) which means that I have not felt so severely freezing and the fibro seems to calm down in mild temperatures. It flares in cold and also in extreme heat like the Summer. I am eager for Spring and all the gentle warmth it brings. I am also looking forward to Easter. I love going to Target and seeing all of the yellows and pastels. All of the delicious
candy I can no longer eat, but looks so tasty on the shelves. Especially Cadbury eggs. Favorite! I love Easter a lot. It celebrates my Jesus dying on the cross, being buried, and then RISING so that we could have eternal life. It is up there with Christmas in my opinion. Maybe even more awesome.

I still feel horrendous. Last night it felt like both of my feet were swollen 5 times their normal amount. They hurt and ached so bad as if I had walked everyday for a month at Disneyland. It was bad, bad, bad. Also the nausea persists and I am still having issues in my personal area. I am thinking of going to the ER this week sometime vs. waiting to see the ob/gyn at the clinic next month. I am not keen on waiting another few weeks since I have had numerous ailments in the last month. I am particularly concerned about when I had the PID. I want to get current ultrasounds and tests to see if there was any damage done to my uterus, fallopian tubes, and all that. I am growing increasingly worried that I may not be able to bear children. I've already had a miscarriage and now I have had all of these issues. I am praying about it A LOT and trusting that even a bad doctor's report does not mean my God cannot heal my womb.

Which leads me to my other bit of good news this weekend. Thank you to those who were praying for my food stamps and CMSP to go through. They did! This woman from the benefits action center called me on Thursday and said she felt bad and was going to process me right away. She asked me to fax some paperwork (Thanks Aaron!)and by Saturday morning I had food stamps again. :) I didn't know CMSP was going to go through too. It was my understanding that there was more to do as far as that was concerned. I want to get my prescriptions and make appointments in case they deactivate it again for some reason.

It's been highly pleasant this weekend. I have had the apartment to myself (aside from Mylie) and I have been able to go outside into the delicious sunshine. It makes such a difference. A verse I am clinging to is Psalm 91(particularly these verses):

You who sit down in the High God's presence, spend the night in Shaddai's shadow,
Say this: "God, you're my refuge.
I trust in you and I'm safe!"
That's right—he rescues you from hidden traps,
shields you from deadly hazards.
His huge outstretched arms protect you—
under them you're perfectly safe;
his arms fend off all harm.
Fear nothing—not wild wolves in the night,
not flying arrows in the day,
Not disease that prowls through the darkness,
not disaster that erupts at high noon.

Also these:

Psalm 63:2-4
I have seen you in the sanctuary
and beheld your power and your glory.
Because your love is better than life,
my lips will glorify you.
I will praise you as long as I live,
and in your name I will lift up my hands.


Psalm 90:12-17
Oh! Teach us to live well! Teach us to live wisely and well! Come back, God - how long do we have to wait? - and treat your servants with kindness for a change. Surprise us with love at daybreak; then we'll skip and dance all the day long. Make up for the bad times with some good times; we've seen enough evil to last a lifetime. Let your servants see what you're best at - the ways you rule and bless your children. And let the loveliness of our Lord, our God, rest on us, confirming the work that we do. Oh, yes. Affirm the work that we do!

That's been life these past couple of days. Tomorrow Maddison turns 16! Holy bananas how did she got from 11 to 16 in the blink of an eye?! I am going to sleep at like 8pm tonight (not really but still really early) so that I can come out of hiding tomorrow for a few hours of food and Borders to celebrate her birthday.

On the pain scale of 1-10 I am still a 15. My fingers are still peeling, IBS is still torturing me, my back is hurting worse then usual, and the myriad of ailments is still persistent BUT God is still good, the sun is shining, Mylie is here next to me safe and sound, and I am alive. Couldn't ask for anything more... well, maybe some healin.'

My Yaye List:
-rediscovering old delights
-channel surfing with no guide (infomercials and tacky shows galore! What a study!)
-the heater blowing on my skin
-sunshine streaming through the blinds
-laying under the kitchen table with Aaron and Mylie (complete with stuffed animals and pillows)
-getting (from the library) the Wee sing dvd my brother and I used to watch over and over and sharing it's supreme coolness with Mylie. My dad bought this when we were young and it was my very favorite.
-spending time with Jesus
-alone time on the couch
-not going on the computer first thing
-a pantry full of food (Thanks Chris and Mary)
-ebt is active again
-my parents
-the greeting card from Theresa (I miss you so much!)
-Aaron. For everything.
-My Auntie's.
-re-reading the Alice books I read as a kid (remember those Monica?!)
-more holds at the library (Seriously people the library is the best place!)
-The Fibromyalgia Crusade and the Fun House on Facebook (www.chroniclesoffibro.blogspot.com)

It's a new day. I am going to start on sponsor letters soon and get to things on my list, but today...

well today the sun is calling, calling me.

;)

Update

I am feeling worse then usual.
IBS is kickin' full blast. My joints and limbs are extremely swollen and hurt supremely. I found out I have another chronic condition to add to my buffet called Vulvar Vestibulitis. I am so tired and in the middle of trying to get my food stamps re-approved and my free health coverage to go through. It's exhausting not having any consistent medical coverage especially being sick every darn day, and also having some new ailment every other week.
I'm thoroughly drained. This beast is dragging me all over the floor. Not literally but I feel so...

ugh.

The one great thing is that my emotions have settled down somewhat and the angry, screaming , hysterical woman I have been the last couple of months has calmed down and I feel peace again. I still get annoyed or frustrated or just plain sad (like the other day when I went to the clinic and was told 1.they have reached the end of the road with me and I need to see a specialist regarding the vestibulitis and 2. having to process the fact that there is yet another condition) but I am not reacting anymore. That's great because I really am not a fan of losing control of my emotions.

Luckily vestibulitis is not detrimental. It's very painful and embarrassing and frustrating as all heck, but I'll take it over PID like I had a few weeks ago. The next step with that situation is to see a regular OB/GYN as soon as CMSP is approved. I would like to get all new ultrasounds and vaginal ultrasounds again. It was last April that everything was normal, so we'll see what happens now. I am praying there was no damage done to my uterus and everything when I had the PID. Also I was given a number for a clinic in San Francisco that deals with the vestibulitis. The clinician told me I will need to deal specifically with that. I felt totally irritated when she looked at me and judged me. She told me that "sick people are hunched over and can't move." She also told me that I have to be patient with myself over the condition. How about when you have fibrofreakingmyalgia you never want to move and you would lay down and cry all dang day if it would do a lick of good. We are strong, us fibro fighters. We get up, we get dressed, we do things normal "sick" people whine about when they are ill, we troop along. We have days where earrings make a cameo and we even smile and laugh (shocker I know). And you know what? We do that all while we feel like dog dung.

I've been realizing how strong I am. Like really. Not in a vain way, but in a "wait a darn minute here. I am dealing with not 1 condition but several... at once... oh mylanta that's a huge deal." And I do it without pain meds. I had to give up the vicodin and the tramadol in July 2010 as I felt like absolute death when I took them. Even when I had all 4 wisdom teeth out in September I did it without pain pills. This is a huge revelation for me as I have been camping out on anger and helplessness and guilt for MONTHS. I am just now understanding the weight of what I am going through.

It's heavy. I have several debilitating things going on at once everyday. Fibromyalgia is the most consuming as it encompasses so many symptoms. It literally sucks the life out of me. But I also have IBS, vulvar vestibulitis, hip bursitis, dyshidrotic eczema, diagnosed with lumbar osteoarthritis (which I believe I was healed from last year), acid reflux, migraines, vertigo, elevated high blood pressure, recurrent kidney infections,the PID of last month,the BV of last month, yeast infections from the antibiotics, and the staph infection that just won't fully go away.

It's a lot to take in most times and honestly I feel I haven't fully processed the fibro because all the other things keep popping up. Three steps forward, two steps back... that's been the dance these last 12+ months.

I need time away from ME. ;) I need a vacation outside of this body so I can actually rest. I want to get a full night of sleep, not be on the toilet so many times a day, not feel so cold all of the time, not have to apply and reapply and stress for rides and have the huge list of fibro complaints that I do.

Right now I've got to go. There's 800 things clamoring for my attention and it's taking everything I have to muster the energy for a shower.

<3

Silver Lining

I am blessed I did not get sick when I was a teenager or a young adult. I was able to live. I hung out with friends. Lord, if I hung out in groups like that or even that frequently I would not be able to handle it at all now! I was able to work. Since I was 16 years old I always held a job but for a few breaks in-between when I tried my hand at college... I worked my way feverishly up the ladder at most jobs I had. I have worked at a bank, corporate offices, retail stores we know and love, fast food, daycare, nannying, at a hospital, etc. I have been a manager and I have been a leader. I have moved across the country (I was 22 and it was my first time away from home for a longer period then 2 weeks) and had a job in another state. I worked hard no matter what job I had. I loved it. That all changed in November of 2009 with that first kidney infection. Staying in California instead of moving in with my parents as planned last summer is my attempt to still work, to still "play the game," to stay connected to who I used to be. I know that when it is the right time the Lord will tell me and all parties involved will have a peace with the transition. I think about my life the last few years before I got sick and I know I could never do that again. I miss it so much. Taking care of at minimum 2 kids at a time, 6 maximum on any given day. Going to their ballet recitals, class trips, selling Girl Scout cookies, going on Girl Scout trips, trotting them to dentist and doctors appointments, playing games, loving, and just having the privilege of interacting with those amazing children EVERY SINGLE DAY. I miss it so much I could sob right now. No one in my life understood why I chose that job. I got paid peanuts and it was all consuming. I was often times exhausted and worked 40+ hours a week. Aside from the regular schedule of mornings, after school, and some evenings I also started taking 3 of the older kids to church with me back in 2006. By 2008 all 3 loved Jesus and I got the joy of baptizing them one weekend at our home church. It was busy though! They were attending youth group and I started doing leadership there. So I worked all day everyday and then every night there was some event.... my Bible study group, their Bible study group, youth group, corporate prayer... plus we spent lots of time together aside from that going to Borders or movies or wherever. It was a whirlwind. Lots of gas in the tank, broken car after broken car, a small paycheck that barely stretched week to week, and no time for myself. Lots of judgement came to me. My own dad told me I was wasting my life. Old friends caught up in the world of "regular" jobs changed towards me. I was judged immensely. It was the most challenging work I ever did and I am so fiercely grateful and protective over it. Those kids grew me and tested me and made me love in ways I never thought possible. I struggled every day to get through... financially, emotionally sometimes, physically... but it was the best time of my life. How many people can say that they got to teach and love on amazing kids and see how the Lord transformed them into butterflies over the years? I would rather never get paid to be able to say that. I mean that. I got to be a "mom" without ever giving birth. From 2 months old to 12 years they ranged during the time. Now they are so brilliant in character! It's so beautiful to see. So I miss that. I still keep in touch with the younger ones, I still take care of Mylie everyday, I still see the teens every week. But once a week is not enough. I miss working. I miss being. I miss dropping everything to hang out with them.

And yet I know I could not handle it now. I can barely make it through a shower and sitting through church takes everything I have. Once a week is all I can usually bear outside of this apartment. So today I realize that I am still "working." I work for free. I have never charged to take care of Mylie. There has never been and will never be a desire to get paid to take care of her. I have taken care of her since she was 2 months old and my friend had to go back to work. Their daycare plans fell through and I offered to watch Mylie since I watched the other kids already. Soon after I started caring for her I had to move out of my parents house and I moved in with my friend and her husband. It is now almost 5 years later and Mylie has become a surrogate daughter to me. The couple I lived with are divorcing and now I live with Mylie and her father. I have been sick this whole time and I have felt like a failure over and over for not being able to "work." How shocking to realize how much worth we put on WHAT we do. It never occurred to me that taking care of Mylie is considered work. It's as natural to me as breathing. I delight in her, I love her, I would die for her. BUT I am not lazy. My very best friend told me a startling truth the other day. He told me I have been working harder then most this whole time.

Wow....

I am still letting that one sink in.

Have I really? I think back over all these months. I have berated myself for being so stressed, for crying, for having bad days, for closing off, but when I look back images flash in my mind... being hunched over in the movie theatre bathroom puking over and over begging for anyone to help me, every ER visit, every procedure, every trigger point or back injection, every doctor who doubted me, every hope that resulted in no answer, bleeding from places people shouldn't bleed from, not knowing what was happening to me, being judged by people who I have known almost my whole life, being gossiped about, being told I was faking it, moving 3x in 3 months right after my health REALLY got bad, going to NC like I was fine, sitting in those wheelchairs at the airport and feeling so ashamed because I looked healthy, every single stabbing pain and every moment of absolute bleakness, and now the continued ailments that come one after another. I see all of those "me's" flash in my mind and I cannot believe I have been so judgmental and unkind to myself.

I see now that I CAN find the blessings even in this ordeal. I am clothed, fed, and I have a place to lay my head at night. I have an illness but I still work hard. I still fight it. I still survive. My God has blessed me every step of the way. Every wall erected, every disappointment faced, each time I squeezed these eyes shut and sought His face as they poked and prodded me like an experiment... He was there. I knew that of course. Any believer could tell you that. But now I KNOW it. I know it with every fiber of my being. I know it in my bone marrow. I know who I am. That is not anything I have done on my own. Revelation can only come when we ask for it. I am so in awe of how He is so willing to reveal. Wow.

About 2 years ago I prayed to be stripped of my desire for possessions. I asked the Lord to always let me be in want so that I may always rely on Him. I asked for Him to take my love for the materialistic things here and diminish it. I asked that I never became a woman obsessed with make-up or clothes or being trendy. I didn't know why I felt that way. I just started to. The more I sought Jesus, the more I asked to be stripped of western culture and our spoiled lives. Slowly God started to ask me to surrender things. My television show box set collections was first. I was way too into tv and still struggle with it to this day. I collected numerous shows on dvd. It was ridiculous. God asked me to sell them and it was a process with a lot of ups and downs. It was a stronghold in my life and I didn't let it go easily. I would sell a bunch and then I'd go to Target and there would be a sale. I'd buy a few again and then sell them. It was a vicious cycle. Eventually I got rid of ALL of them. It took a long time, and I still have baby inklings at times to buy "just this one" but I don't because I know I don't really want them. Over the years He has also asked me to give up my doll collection which I'd had since I was a young girl. Books. Even to burn the 84 journals I'd had from the ages of 12-27. Every laptop I've had (3) has broken with some kind of wiring or system problem. Every car I have had ends up breaking down.

I have always wondered why those things would happen. I am responsible and take care of my possessions. Now I almost want to laugh at myself. DUH! I ASKED! Not that God is breaking my car or making me poor. No, no, no. I believe wholly that my God wants to bless me, bless us. I believe and know He wants us healed and whole and fruitful. No, no. I believe I have missed the mark and not seen the blessings in what He has allowed all this time. I asked for Him to refine my character, to make me longsuffering, to grow my heart. I asked Him to ingrain the Philippines in my mind. My love for that nation. The orphans who were so delighted by one small stuffed animal or a pack of crayons. I asked Him to make me NEVER want the luxuries when I could be free of possessions.

And look! Now here I am living with just my clothes and no money to speak of. YET I am clothed and fed and I have a place to live. ONLY God can do that. I asked Him to strip me. I asked. I ASKED. He answered. I am so excited it's unbelievable! So my friends, I have been so wrong. Yes, my pain is real. Yes, I will have bad days. I will scream again and cry and feel overwhelmed... but I am starting to see Jesus in this again. My depression and anger are melting as He ministers to my heart.

I am amazed and once again so...

just overwhelmed by the goodness of our Jesus.

"I Accept."

I watched a majorly trashy reality show (not my usual cup of tea) while in bed this past weekend. It was absolutely ridiculous and horrible. The women all put one another down, they complained about EVERYTHING, and they were so full of dramies.

But it was entertaining as all heck. It made me think. I was somehow comforted by the fact that these spoiled, rich girls who complained so much were way worse then I thought I was talking about my illness.

Breakthrough moment!

I talked with someone I trust to give me honest feedback and got into some serious prayer. It was in the stillness of late night Friday that I began to see the last year of my life clearly. I saw for the first time how I had been operating in guilt since I got the very first kidney infection in November 2009. I could see how I had silenced myself as not to burden people around me. I saw how I had overworked and pushed myself to this breaking point of despair and disillusionment. I saw that I had not taken care of myself even slightly. That I was so broken down and defeated feeling because I had not ever even opened up my eyes to accept what was going on.

I have been begging God for restored peace. I have been begging for my "balance" back. It wasn't until I stood outside looking up at that starry sky, worship music cresting with love sailing through my earphones and into my ear drums, that I started to have it again.

I let go.

I accept that I am sick. I accept that I now have major limitations. I accept that I am changed.

I have been thinking a lot about this season of my life. It has consumed me, stolen many things from me, and demanded ALL of my energy and attention. It is still desperate to bring me to my knees in pain and absolute horror. I choose not to. I choose instead to fall to my knees in pure love and adoration of the God who is with me throughout this entire ordeal. Where before I felt alone, I now remember:

Deuteronomy 31:6
Be strong and of good courage, do not fear nor be afraid of them; for the LORD your God, He is the One who goes with you. He will not leave you nor forsake you.

Psalm 27:1
The LORD is my light and my salvation; Whom shall I fear? The LORD is the strength of my life; Of whom shall I be afraid?

Isaiah 41:13
For I am the LORD, your God, who takes hold of your right hand and says to you, Do not fear; I will help you.

Matthew 10:28
And do not fear those who kill the body but cannot kill the soul. But rather fear Him who is able to destroy both soul and body in hell.

2 Corinthians 4:7-11
But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body. For we who are alive are always being given over to death for Jesus' sake, so that his life may be revealed in our mortal body.

1 Peter 3:13-14
Who is going to harm you if you are eager to do good? But even if you should suffer for what is right, you are blessed. "Do not fear what they fear; do not be frightened."

It is not an easy road to travel.... knowing that I will be sick for the rest of my life. Many believers would scoff and say "you will be healed." I say: EVEN if I were not to be healed I still know and proclaim that GOD IS GOOD. I have prayed about that a lot and I think I now understand that the goal is NOT to be healed but to be obedient in seeking His healing hand, trusting Him no matter if I am sick or not. Sometimes the affliction is not the issue. Right now I know I am being stripped of pride I did not know existed in my spirit. All of my ego is being snuffed out. As I deplete, God pours in fresh mercy and grace. He constantly fills my vat to overflowing. Though I am poor financially and physically, He is weaning me all the more of dependencies on people or on circumstances. As I complained daily I would feel conviction. I knew I did not want to be in that pit of anger and resentment. I can't promise that I will never feel that way during this trial, but I can say that I feel the huge weight of it has lifted a bunch.

One thing that I have always struggled with is boundaries. I was a notorious yes person. I sincerely want to serve others, but it has often been my downfall. That in itself is wrong. I am learning that no one can create my boundaries except for me. If people get mad at me that's their issue. If I am sincere and upright in heart then I shall not fear judgement. Being sick I have felt like I owe everyone everything. Seriously. I have kept at a manic pace in my life because I haven't wanted to fail the people I love. I have wanted to stay strong. The cycle with being sick is a buffet of guilt, shame, anger, depression, and doubt. I am clear now that I do not owe an explanation to anyone for being sick.

I have constantly worried. I worried about how I was going to eat, and the Lord provided each time. I worried about how I will get my medication, and I always have it. I worried and worried, not relying on some of my most favorite verses:

Philippians 4:6
Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.

Matthew 6:25-34
“Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Can any one of you by worrying add a single hour to your life[a]?
“And why do you worry about clothes? See how the flowers of the field grow. They do not labor or spin. Yet I tell you that not even Solomon in all his splendor was dressed like one of these. If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you—you of little faith? So do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ For the pagans run after all these things, and your heavenly Father knows that you need them. But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

I am learning that just because we are stripped of things and healed and brought through numerous trials, that there will still be one more and one more after that and still one more. I welcome that. If I am in the midst of a trial then I know I belong to Jesus.

1 Peter 4:12
Dear friends, do not be surprised at the painful trial you are suffering, as though something strange were happening to you.

This has been THE hardest time of my life thus far. I have had my fair share of trials but this one definitely takes the cake. It has changed everything about me. My character, my physical appearance, my heart. I have cried more tears, yelled more then I ever have, and set my jaw in stubborn anger.

But as always the love of Jesus finds it's way and settles over my soul. I am constantly amazed at the devotion of my Savior to me. He comes into the darkest places to find me. I knew my heart was hardening. I clamped my lips and stopped praying out loud much. Gone were the fierce cries the Holy Spirit spoke through my lips. Nope- I clamped my lips as I clamped my heart. Believing that it was enough to read my Bible and drum out soft prayers on occasion. When I felt well enough. I let my hunger for God, my desperation for intimacy with Him fall to the wayside as I got completely swept up in my sickness. The blackness of it was too thick and covered all of me.

I did not realize how skewed my perspective had become.

When I was healthy it was easy to love, to serve, to be "super Christian" galore. I had friends and community. I am now understanding what authentic fellowship is, and though I wish not to offend, I dare say I have found it outside of a church building. I see now that many relationships I enjoyed were not based on love. They were based on being in the same building. I love church. I love meeting with other believers. One of my favorite things to do ever is to worship together, voices blending sweetly as the presence of God comes and we are given just a glimpse of the heavenlies. BUT I also know now that true fellowship is more then hanging out at Starbucks together. I think back to my old church- the church where I met my best friend, Jesus. I recall the early days of fellowship. The genuine friendships that were created over time, We had fun. A huge group of about 30, we had lunch together after church every Sunday, met together in our homes to pray, helped each other through our early twenties. And now, in this crucible I look to those simple days of honesty and humility and I am so grateful that as far up we think we may have climbed, that God will ALWAYS, ALWAYS, ALWAYS bring us back to where we started.
That is where I am now. The bare basics of loving Jesus. Learning again to trust Him with ALL of me. I am brought to my knees as I think about Jesus dying on the cross for me. For you. For all of us. I am humbled by the fact that sometimes I get too big for my britches and I think I have everything mastered, but I really don't. Ha!
I am tired of being sad. I wish to not be angry. I do not want to bow down to this sickness, but I want to be patient with it. I want to take from it and still serve, still love, still have joy no matter what.

Colossians 3:23-24
Whatever you do, work at it with all your heart, as working for the Lord, not for human masters, since you know that you will receive an inheritance from the Lord as a reward. It is the Lord Christ you are serving.

Philippians 4:11-13
I am not saying this because I am in need, for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through him who gives me strength.

Living with a disease that affects everything from my brain to my central nervous system is often times confusing and scary. I am walking blind. My desire is to bring about awareness for Fibromyalgia and all of us enduring it's debilitating effects. A fabulous woman has a blog I stumbled upon one day and through her The Fibromyalgia Crusade was born! If you want to support me and all the people out there who suffer from this please feel free to check out http://www.fibromyalgiacrusade.com/
There are awareness bands you can purchase to help support us. It would mean a lot to me to see you, my dear friends and family, sporting these bands. It may seem like "just another band" but it's not. To me it screams of hope that someday we may have answers about this disease. It says to me that my disease is real and validated and that this community of ours is banding (haha get it? ;) together to fight against it. I ask you to consider sporting one of these. I cannot convey accurately how lonely this trial is. Something as simple as an awareness band is actually quite significant. Will you help me bring about awareness for my disease? Will you help speak up for me and the others like me who are struggling everyday just to get out of bed and through a shower?

I feel the fog lifting. I feel my heart shifting and opening and breathing again. I feel hope for the first time in 14 months.

This is my life verse right now. I am praying to live this, to breathe it, to ooze it.

2 Timothy 1:7
For God has not given us a spirit of fear and timidity, but of power, love, and self-discipline.

I may not get healed physically, but oh how my heart is healing even now...

Thank you for supporting me.

Blah

Current symptoms:
Extreme nausea everyday all day
New staph blister on right leg again (I keep writing and saying left. Silly fibro brain!)
Dyshidrotic eczema getting real bad again after a couple of months relief
Stiffness all over
Inflammation on my back
Everywhere hurts
Fatigue as usual
Bottom of left foot stabbing pain
Freezing!
Elbows hurt
IBS
Bloated galore
No appetite
Vertigo
Leg cramps and numbness
Rib pain

I finished all 3 antibiotics within the last week and a half. I notice that when I stop taking Doxycycline that 1. my fibro symptoms flare up worse then usual and 2.the staph keeps coming back. Since I am in limbo waiting to get approved for CMSP again I cannot go to the doctor. I am pretty frustrated about that, but determined to stay positive. I am curious as to why I seem to have some kind of bacteria that is affecting everything from my skin to my uterus. Hmm... The trouble is that so many of these ailments overlap with fibro so I have no idea what is what.
I am eager to go to the Treatment Center in March so they can hopefully find all of these other "suckers" that are inside my body. Maybe then I have some real hope of getting fibro under control. This new (or recurrent) ailment situation every week on top of the daily fibro wear and tear is too much. I feel like if I have one more ailment I may lose it. Not entirely convinced the PID and kidney infection are entirely gone.

All I am wanting is tons of chocolate which is bad for me. Boo hoo hoo.

;)

Sing of the Blood- Deluge Band

I can do this.

I am doing this.

My God has promised to never leave me nor forsake me. He hasn't. he has been here every step of the way. Every ER visit, every procedure, every tear, every time I wonder where my next meal is going to come from, every time I wonder how I will get my medication. He provides. He loves me.

I feel some of my joy come back. My heart is open. My spirit is open. Oh Lord, "let it rain. Open the floodgates of heaven. Let it rain....."

It's hard. It's life changing. It's been one ailment after another fighting for time with the always persistent fibromyalgia, but change doesn't have to be bad.

I am agreeing to change with this. I am letting myself off the hook. I am letting go of every demand, every expectation I put on myself. I say no to the demands of other people. I leave it now.

If I am living for Jesus... to love Him, delight in Him, be romanced by Him, and allow Him to use me for His kingdom then all of this stuff is just stuff. It's real and difficult, but it's also nothing compared to the life He has given me.

I see now that I am not alone. I often times feel alone, but I am not. I have amazing parents, family, and a few true blue friends. I am thankful that this sickness has weeded out counterfeit relationships in my life. Often this disease is about the patient, but I want all of those I love that I think of you often. I recognize how my sickness has changed our dynamics and I ask you to transition with me. I am blessed. I have the same best friends (Monica and Roxanne) I had at 12 years old, and though we don't talk everyday, I know that when it matters we will (we do) drop everything for one another SATC status. I am grateful to Melinda for never giving up on me. For praying for me. For loving me when I am unlovable. I have found that the best friends truly are the ones who will sit with us and sometimes not even say a word. I am so grateful for my parents and my Aunties and my little brother. I am grateful for Theresa, Camille, Adina, La'Tees. People who are tried and true. I am grateful for Aaron for giving so much of his time and attention to understanding this with me. I am grateful for Mylie. She brings me such joy. I am grateful for restored communication with Lindsey. I am grateful for Maddison, April, Simonne, and Antonia. I am grateful that my dear friend, Ashley has CFS but she is functioning and thriving! I am thankful for Leah and her blog and the Fibromyalgia Crusade. I am grateful for community at the Fun House. ;)

I am not alone.

I am glad that I am questioning motives. I am glad that I am having boundaries. I am glad that I am sick.

Yes. I said that. I hate it, I would not wish this on anyone ever, but through this affliction I am being so broken down, I am being so tormented that it is purging all of the ugly stuff in my heart. It is taking fleshy habits and chipping away until it becomes something glittering for the Lord.

I take dominion back over my body. I say no to discouragement, disillusionment, pride, fear, depression, and anxiety. I let go of all of the worry I pack on everyday.

My God is not some "idea" in the sky somewhere. He is real and passionate and intensely involved in every area of my life.

Through this crucible I know that more then ever. Even as I have clamped my lips and squeaked out halfhearted prayers, even as I have hardened my heart just a smidge, even as I cry and scream and beg... I know that I am safe in His hand.

There is nothing I have to do but listen to Him.

I receive it.

Thank you Abba for bringing me back to the basics. Me and you. Me and you.

Puffy Pufferton

The first thing my Auntie said today was "Your face is so puffy!"
Yes, yes. I am aware. It's not fun. Just another perk of the illness stealing my body.

Rubber Band

From my absolute breaking points come my biggest victories. The slightly hopeful, eager to blog me that sits here right now is no reflection of the woman I was a mere 3 hours ago. It has been a much more nightmarish week then usual. The cold has somehow sunk into my bones and will not quit aggravating the fibro beast that prowls around the clock in my body. It has been daring enough to deprive me of even more sleep and has inched my pain and intolerance (to anyone or anything) up to what must be the max.

I have had numerous highs and lows this week. Anger, guilt and condemnation have cycled endlessly in numbing loops. I have not wanted to move because I am really that tired. I sat at the kitchen table tonight having a conversation, getting a 4 year old ready to go, writing out something... and I have no idea how I got from there to this moment. Being in pain and being so tired makes me a zombie sometimes. All I can think about is rest. This afternoon I had the chance to skype with my parents online, and I made it an unpleasant experience with my attitude. I can't articulate how I want to be able to handle it, but that it's overwhelming to talk on the phone.

I've been doing a lot of reflection and seeking God in all of this. I've been so angry and so fearful and so angry. I have become negative. I have become pessimistic. I am constantly waiting for the next bad thing to happen. Not all of the time, but some of it is far too much. I worry about Mylie. I worry about my parents. I worry about my brother. I wonder if Aaron will get into an accident... my Aunties... anyone I know and love. I worry. I worry what will happen to my body next. What infection is plotting to emerge inside of me? There does not seem to be an end, only a constant physical breakdown somewhere inside of me.

I have asked God to show me an accurate vision of myself, because I don't have one. I don't see myself anymore. I am a ghost of me, but I am still fighting to win. I am my earthy father's daughter. I don't give up. I make it happen. My daddy taught me that and I thank God he did. If he didn't teach me how to be strong I would have given up a long time ago.

The other night I actually allowed myself to rest. I am only now realizing that although I have carried the unhealthy image that I am lazy or weak, I have in fact been busting my tail with no pause at all. I have been sick and in pain every single day for over a year with no stop in-between. I have been at the lowest point ever energy wise or emotionally and I have done it all while raising my 4 year old niece, moving 3x, helping loved ones through hard times, going to NC. Now I'm no martyr and I'm not boasting, but I am saying I am starting to understand that I have not, in the slightest bit, taken time to rest. To allow myself to take care of MYSELF even just a little bit. Instead I have gone mad trying to be "normal." Trying to laugh and joke and have energy that simply does not exist in my body. I have not been honest with MYSELF about what I need. I feel so guilty for even being sick. Like I don't have the right to breathe oxygen. Like I am wasting space. I have become listless and sad. I hardly take pictures which I have always loved, I don't find joy in a lot. Like I said, I always want to sleep. But I don't.

I instead clean closets and do laundry, I go to the store when I feel like I am dying, I make time to listen and take care of everyone around me...

except myself.

I stopped taking care of me. Did I ever really take care of me? I feel like I genuinely want to put others first so I normally do. But I neglect my sleep, my need for rest, my even setting aside time to process through the fact that I have a life-changing, debilitating illness. Is it killing me? I don't think so, but it's disabling and scary and very real and I don't know that for sure. When your body is breaking down piece by piece it's not so easy to know you are not going to die soon.

I want to be more loving and caring to myself. To not feel guilty for needing time alone. To not feel guilty for hunching my boundaries up just a smidge higher. If I can learn not to fight this beast to the death and misery of myself but to tame it... to work with it...not battling myself but seducing it sleep... not bowing down but grasping that when I fight so hard against it I am fighting against myself... if I can learn that and live it then maybe I can get through.

I will get through.

What You Should Know About Me

By Angela Reed Fitzgerald
WHAT YOU SHOULD KNOW ABOUT ME

1. My pain - My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.

2. My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

3. My forgetfulness - Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don't have any short-term memory at all.

4. My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

5. My sensitivities - I just can't stand it! "It" could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the "aggravating everything disorder." So don't make me open the drapes or listen to your child scream. I really can't stand it.

6. My intolerance - I can't stand heat, either. Or humidity. If I am a man, I sweat...profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don't feel compelled to point this shortcoming out to me. I know. And don't be surprised if I shake uncontrollably when it's cold. I don't tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.

7. My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian's patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

8. My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

9. My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it.

10. My need for therapy - If I get a massage every week, don't envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot-filled. If I can stand the pain, regular massage can help, at least temporarily.

11. My good days - If you see me smiling and functioning normally, don't assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.

12. My uniqueness - Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.

I hope that this helps you understand me, but if you still doubt my pain, your local bookstore, library and the internet have many good books and articles on fibromyalgia.

Aaron,
I love that you just crawled in the closet with me and painted my nails while I was crying without saying a word. You are a great best friend and the best person I know.
I love you.

Strangled

I am laughing, I am free, I am me again...

and then it's too much...

being in this body... sounds, life all around those of us that are falling apart.

Our bodies have betrayed us. We are no longer strong. We are fooled over and over

thinking that we have somehow mastered this beast...

it seems it cannot be tamed...

it shows up at inconvenient times...

like when you are on the way to pick up the girls for a Saturday night movie (this

happened last weekend) and you have to pull over to vomit several times....

when you go to church and you are almost falling asleep during service because your

body is just so tired...

and even when you go up for prayer you have no idea how you made it to the front of

the sanctuary, and even worse as this lady is praying and declaring healing over you

and asking if there is a stronghold in your life and you look dumbly back at her and

say "well yes, this illness is quite a stronghold. It's pretty consuming. I am losing

my focus on God because it's demanding all of me..." you're trying to receive and

tears come because the presence of the Lord is upon you and you are remembering who

you are... so you leave and go to Borders and laugh and have a blast... you think you

are better! No, you ARE better. Nothing can stop you... so what if you have to wear

earplugs all day long and even at church and the movies.... so what if you are so

tired the mere idea of even getting out of the car and putting on pajamas and

nestling into bed is so overwhelming... at least you had a good day... at least you

went to church and you are tired because you did something... but then you get inside

and suddenly the mood is black. Gone is the joy and hope that lit inside of you all

night, and here you are again. You and the beast. It is trying to claw into you...

break you down... get you to resist. To turn away from God. To hate people. To hate

life. And it seems like it is winning. You cry, scream, rage, wonder why... and there

is absolutely no answer.

But we go on. We exist in these bodies. Our spirits are strong. We feel so weak

but we are brave. We have to be because there is no answer for what we are going

through. This beast is trying to break us down...

but we will fight.

We will win.

We will be full of light again.

Sugar, Sugar

I woke up a few hours ago with acid reflux and IBS competing for attention. I made the bad decision to indulge in pizza and soda last night and now I am paying the penalty. I can't sleep. It feels like there is something unpleasant hovering in my guts somewhere. I am hot and cold. Snuggie on, Snuggie off. I have gone to the bathroom so many times this week that it is now red and itchy and so very uncomfortable.Food is my enemy. I am still not wanting to drink much, which is not good as I am almost positive I still have some kind of kidney infection situation going on.
That's one of the hardest things about Fibro. We have so many aches and pains, and a whole list of ailments. It's getting harder to decipher what's critical and what's a part of the package deal. When I first got sick it was always an emergency. Before the diagnosis there were so many things it could be. Sometimes it's still like that. I am constantly wondering what's going on inside of my body. Since our ailments are severe and spread out, sometimes it's difficult to get a handle on what exactly is going on. Honestly, I'm not sure many of us really could tell you even if we wanted to.
I'm going to attempt slumber. Fingers crossed! ;)

Insomnia & Other Stuff

Last night I was standing outside and I started praying. Words tumbling, spilling from lips begging for the presence of my God. And of course the peace came. Tears streamed down into my blouse but I was only vaguely aware. I had come to a refuge I had many times been too but had not sat in often the last few weeks. In my own fear and rebellion I started to shut down- always talking to Jesus, but not allowing Him to balm my wounds. Last night as I stood there staring at the stars I had much to be sad about. My health continues to see-saw tauntingly as I sit here trying in vain (or so it seems) to figure it out. The myriad of aches and pains never seem to lessen, merely shift and settle in and upon other parts until I am just one huge hurt.
Earlier yesterday I walked to the mailbox which is quite far. Then in a moment of pure "I can't just sit here anymore" I started to clean Mylie's closet... and I finished! I felt so accomplished. It was great to feel some semblance if for just a night. Today I did a bunch of stuff around the apartment, and even managed a few phone conversations. That's a HUGE feat and it feels amazing to have been able to do it. I am going to continue walking (with the knowledge that I can't press too hard too fast and that rest will be taken if necessary) and implement some form of soft yoga or something in eventually. I feel unfit and I can't wait to take control of that aspect of my life again.
So I had another night of not being able to sleep, but I made use out of it. I decided to return all of the TV shows I rented from the library. They are a huge distraction and a previous stronghold. It would be so easy to continue to give way to entertainment. I choose not to. So this evening they were dropped off at the library. I don't like TV much but for old reruns of 80's sitcoms and Grey's Anatomy. Lost was my favorite but now it's gone. :( Anyway, so I also journaled and just sat in silence with the Lord.
After the tear streaming incident outside I came in and watched Joyce Meyer. I DVR Everyday Living everyday and the Lord almost always speaks STRAIGHT to my heart. Last night was no exception. There was a lot about feeling rejected by people who you've trusted ( a lot of that this past year with people not believing I am sick, etc.), pride and ego, and some other stuff.
It was deep.
I got deep into prayer and just asked Jesus to minister to my heart. All I could say was how much I missed Him. Though He is always with me and though I talk to Him all the time, I have been holding back. I have been clinging to anger and sadness and I released it last night.
I know I may still get sad or angry but things are looking up. I am processing so much, and I am just asking God for a humble, open heart to hear and see Him in all of this. It's easy to speak the lingo and to even really have a relationship with Jesus, but to also take it for granted.
However, the fibro has not been kind lately. The Snuggie I got for Christmas helps warm the bone chill I seem to have every night. My left ankle was aching tonight and causing me to limp again. Last time it was the right. I continue to have absolutely no appetite. The yeast infection started to come back due to the antibiotics and so I took the pill I got last time. Hopefully it clears up within the day. The IBS is really bad right now, as is the insomnia. I've been taking Tylenol but ran out, so I hope sleep will befriend me this evening.
I continue to find major support in several blogs and an awesome group on Facebook.
I am looking forward to what comes next. I have sponsor letters to write and a life to live.
Hoping tomorrow brings more revelation and more joy.

Friendship

The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing... not healing, not curing... that is a friend who cares.
- Henri Nouwen

I'd like to be the sort of friend that you have been to me, I'd like to be the help that you've been always glad to be; I'd like to mean as much to you each minute of the day, as you have meant old friend of mine, to me along the way.
- Unknown

When one is trying to do something beyond his known powers it is useless to seek the approval of friends. Friends are at their best in moments of defeat.
- Henry Miller (1891 - 1980)

A real friend is one who walks in when the rest of the world walks out.
- Walter Winchell


Friends are those rare people who ask how we are and then wait to hear the answer.
- Unknown

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.