(lông'sŭf'ər-ĭng, lŏng'-)
adj.
Patiently enduring wrongs or difficulties.
I have wanted to write a blog for the last few days but somehow I could not muster up any energy to do so. It's the same today but I figure I should take advantage of some "alone" time to churn out what's been going on.
My mood has been irrational. My body has been see-sawing with the weather. During the day when the sun is shining and it's not so freezing I am able to walk to the mailbox and smile and read and exist without too much difficulty. However, as the afternoon fades to evening I feel the aches and pains settle and get comfortable all over my body. The fatigue is particularly relentless the last few days. I was moaning about why when I realized "well duh!" I usually don't go out except for a quick trip to Safeway or the library (if that)but this week I have had appointments and I've been walking to the mailbox a lot. That means I am extra tired.
Surprisingly it has not been as bad of a week as I anticipated as far as appointments. On Monday I went to see the ob/gyn and it was actually a positive experience. The woman who examined me was about my age (maybe off by a few years), she was filipino (I always feel comfortable with people who share that part of my culture. It reminds me of my Grandma rubbing white flower on my stomach as a little girl. I love being mixed because I get the best of two worlds. I love that where I come from houses a culture that is caring and takes care of each other. Being filipino means you have family in every other filipino person out there. ), and she treated me with respect and courtesy. A far cry from the norm of things.
She did the exam, told me that I have two benign epidermoid cysts. They should go away on their own. Other then that everything seemed good, aside from the fact that my cervix is still bleeding. I have another appointment on March 8th.
The next day I went back to the dermatologist and we reviewed the previous staph infections and the psoriasis on my knees and top of my feet. Since the triamcinolone is not working so much I had Narrow Band Ultra Light Treatment. A fancy way to say:
"Phototherapy or light therapy, involves exposing the skin to ultraviolet light on a regular basis and under medical supervision. Treatments are done in a doctor's office or psoriasis clinic or at home with phototherapy unit. The key to success with light therapy is consistency."
It's supposed to be good for the psoriasis. I will go back in one month for another treatment. It seems to have worked a bit. The skin is definitely more smooth.
I asked about the small pimple-esque thing on my chin and she said I have cherry angioma which is a noncancerous (benign) skin growth.
I just add it to the ever growing list and move on. Nothing else to do. This time I am glad it was not bad news. I can hang with benign growths and all that.
I've also been getting some sleep. Not the best sleep as I wake up drenched in sweat most nights or else absolutely freezing, but sleep nonetheless. My sister sent me some melatonin, so I have been taking one a night with my herbs and it helps. My best friend bought me a miracle ball @ Costco:
I haven't tried it yet, but someday soon I will attempt it. Thanks Monica!
So things have been... stable I guess. So why do I feel so edgy? Why was I so irrational last night? Why am I a giant mood swing ball barreling towards the innocent town below? Maybe because I found a lump near my thigh and bikini line. A lump, not a bump. A hard, painful bump beneath my skin. Great. Maybe because I am so darn tired I cannot see straight. Maybe because I NEED to drive a car. It's been almost 6 months (driving Aaron's to practice stick shift for 15 minutes doesn't count). I want to go to the beach so bad. I want to sit on the sand and watch the waves, smell the sea air, taste the salt on my hair. I want to wonder, to dream, to write. So I feel stuck. I feel happy at some times. I love hearing Mylie play in the tub. Her squeals of joy as she makes up stories for her bath toys. I am blessed by old friends who responded to my sponsor email, new friends that are fighting fibromyalgia too, the card Mylie made me when I was sad, the fact that my parents actually read my sponsor letter and life... sweet, sweet life.
When I was a little girl my mom used to comb my hair She'd fix it in barrettes. There was one hairstyle she'd do- a high ponytail on top of my head and 2 more scrunchies down the back. I wish she could do that now. So often I feel alone, no matter who is around me. I look in the mirror and I am astonished that I have lived all of the things I have. I was a little girl, a teenager, and I survived the craziness of my 20's. Now I am at this juncture in life. This is MY decade. Not too young, not too old. I always assumed 30's was THE decline, but I am starting to understand it's not even old.
I am a work in progress. I feel weak, but Christ is strong in me. I am learning that these moods are normal for what I am going through. I am starting to understand that I don't have to carry guilt...
Because of the LORD’s great love we are not consumed,
for his compassions never fail.
They are new every morning;
great is your faithfulness.
I say to myself, “The LORD is my portion;
therefore I will wait for him.”
Lamentations 3:22-24
Each time I think I've got it, I realize I don't. I am humbled continually by my limitations. I am giving myself permission to cry, to wail, to be mad. I am mad. I am pissed actually. I accept my cup, but I also FEEL. Sometimes as a believer there is a glaze that we seem to pour over people's pain... prayer is a staple. I don't believe that. I believe prayer can break chains, free captives, heal physical bodies and emotional pains, move mountains. I don't appreciate or partner with glossing over brothers and sisters' struggles by telling them to "trust God." I sit here today saying you can trust God and still be afraid. Why is it so hard to admit our own weaknesses? I am guilty of that. Last night instead of saying "I am so depressed right now and I don't know how I am even breathing" I lashed into someone I love. I blamed, I criticized. I BELIEVED my feelings. I lost sight of truth. That's one of the crappiest things about this disease. The ability to get so lost inside our own feelings and pain.
Oh Lord, please fill me to the brim with your peace. Your perfect, steadfast peace. You cover me in your love and I run. Sometimes I am still so darn stubborn and I allow fear to blanket me. Let me stop running. Pin me to the spot. Wrestle me like Jacob.
"That night Jacob got up and took his two wives, his two female servants and his eleven sons and crossed the ford of the Jabbok. After he had sent them across the stream, he sent over all his possessions. So Jacob was left alone, and a man wrestled with him till daybreak. When the man saw that he could not overpower him, he touched the socket of Jacob’s hip so that his hip was wrenched as he wrestled with the man. Then the man said, “Let me go, for it is daybreak.”
But Jacob replied, “I will not let you go unless you bless me.”
The man asked him, “What is your name?”
“Jacob,” he answered.
Then the man said, “Your name will no longer be Jacob, but Israel, because you have struggled with God and with humans and have overcome.”
Jacob said, “Please tell me your name.”
But he replied, “Why do you ask my name?” Then he blessed him there.
So Jacob called the place Peniel, saying, “It is because I saw God face to face, and yet my life was spared.”
The sun rose above him as he passed Peniel, and he was limping because of his hip."
Genesis 32:22-31
Let me be longsuffering, Lord. I am constantly wondering if I have Cancer. if the cells grew back and now it's in me. I worry about the way my left foot has only numbness and tingling on top. I worry about what new ailment will reveal itself. I feel like my entire being is under assault. I have stress and anxiety I am not even aware of. How can I feel happy and laugh and know, know, know in my spirit that this will ALL be made into something glorious ("beauty for ashes") and still have fears hiding inside? How much more will this break me? How much more can I endure? I cling to your promise:
Corinthians 10:13
No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can stand up under it.
And still I am a yo yo with emotions. Oh Lord, oh Lord. I need you. I need your presence. I need your covering. Take these fears.
Its bittersweet to look at pictures of me as a child. When I was new and innocent and life was full of possibility. I wasn't sick. I could eat chocolate and run and play. I had stamina. I could stand to be around people. I had dreams.
I still dream. I dream of a cozy cottage, stacks of books everywhere, writing...
I dream of the Philippines...
I dream....
and my body holds me still.
Let me free of this binding, Lord. Let me move with ease again.
It's as if the woman I was last night is someone else entirely. Last night it was puffy eyes and numerous tears, and anger and guilt and frustration. Right now it's hopeful and sorry and loving.
I can't stand this cycle.
Friday, February 4, 2011
Sunday, January 30, 2011
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)
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)
Friday, January 28, 2011
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!
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
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
Wednesday, January 26, 2011
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.
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.
Sunday, January 23, 2011
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.
;)
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.
;)
Friday, January 21, 2011
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
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
Monday, January 17, 2011
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.
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.
Sunday, January 16, 2011
"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.
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.
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