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