Monday, July 2, 2012

Desensitized

When one lives with chronic pain non-stop for years on end, it becomes a bit uncomfortable to handle talking to people who are going through some kind of temporary pain. It's not that we don't care, not that we think our pain is soooooo much worse (though sometimes it just may be the truth), but rather the fact that we have learned pain as a language and it is the one we speak most fluently.

We don't have the luxury of feeling it only on occasion. In most cases our pain is the sort that has not left since the day it came on us. That includes our exhaustion too. There is no break. Oh, how we long for those days where we'd get hit with just a simple cold or flu and know that it would break in a few days and we could resume our normal lives.... that's just it... THIS is normal. Feeling flu like, feeling the cramps twist and ache and tear in our muscles and bones, the sensation of eyelids so heavy and begging to close.... the stabs in the ribs and fingers and arches of our feet.... they never go away. They simply move around, or take different forms each day. One day it may be stabbing, the next aching, and still the next a furious storm of a whole bunch of pain we never could imagine existed.

It is our life.

When someone speaks to me about being tired, or having a headache, or what have you, I genuinely care. I honestly wish for that pain to go away. I pray for you. But I don't have words to give you, because I feel it everyday and it's normal to me. I don't remember what it feels like to not have pain, in some kind of form, at all times. I have a hazy memory of being a woman without pain, but the actual physical sensation? Oh, that is long gone.

So when my lips grip in that compressed line when you tell me that you ache, or when I smile tersely, it's not because I don't care. It's because I feel pain everyday and I have no idea what to say to someone who has it in a fleeting fashion.

If I did open my mouth I would likely tell you all about Fibromyalgia and I notice how eyes glaze over when I try to share, or I would try to remind you that it is temporary and point you to the good things, and you would get frustrated because your pain is just as valid as mine is, but I cannot validate it for you.

Your right now pain is my everyday, this is my life pain and I don't know what else to do except tell you it will get better.

Because it will.

You are blessed. You are so very, marvelously lucky that your pain is going to go away.

Do you know that?

Please try to be grateful that your pain will go away. Please try to be grateful that your cold or your flu or your broken bone will heal. You will resume your normal lifestyle. You will still be able to hold down a job, go to weddings, be there for your friends and family, have a social life.... after a few days or weeks of resting.

Please try to think about how you feel at this very moment... sick, in bed, your body demanding things from you that you don't even know how to give....

and realize that that pain, that exhaustion, that "please, please leave me alone" feeling is what we Fibromyalgia sufferers feel every single day of our lives. We feel that way 24;7 with no reprieve and we still have to do things like laundry and dishes and errands and live life.

We have learned to work with it. Ignoring the silent screams and moans that the muscles are screeching. Pretending we are not going to keel over as we stand in the garage talking with the neighbor.

You can't see it. It's invisible. We look spry. We smile, we laugh. We reach for that plate to put our spaghetti dinner on, we may even walk around the block.

That's because we have no choice. If we gave in every time our bodies demanded, we would never move. EVER. That is not an exaggeration.

There is literally no break. We have learned to live this way.

Your pain is just as valid as ours.

I'm sorry you hurt.

But you will get better.

Life is but a Breath

There was this kid who died earlier today. He was only 17.

17.

Two days ago my uncle got into an accident when a truck crashed into his scooter and he flew into the air. He walked away with no broken bones but severely banged up. He should have died, according to the people on the scene.

The day before that I was driving to Starbucks when I saw the scene of a small accident. No one was injured but one of the cars was smashed up in the front. I could not see the woman, but for her back and I could see that she was shaking and crying. My own eyes welled with tears.

3 separate accidents, 3 different people, 3 different outcomes.

My heart aches. I feel so much. Way more than I could express in a blog post right now, but the most dominant feeling is remembering how fleeting life is. Birth, the dash, and death.

We go around everyday worrying and fretting over out trivial concerns. We have conversations, grab our food to go, drive around, take trips, make friends, we laugh. And suddenly, without warning, it's just done. Only God knows our expiration date. It gives a lot of weight to what we are doing while we are alive.

I didn't know this kid who passed away, but seems that many of the teens in my life DID know him, and maybe some of them even knew him well. I imagine their sadness, the heavy cloaks of grief his parents and family must feel as they think about how they just saw him yesterday.

When someone dies I always think about weird things. What was their last meal? Did they have to go to the bathroom?

What was this boy thinking about as he drove? What passed his mind before that car slammed into him ending his life forever?

I took a peek at his Facebook page and just a few days ago he "liked" In and Out Burger.

A few days ago.

I sit here sobbing.

I didn't know this kid, but it doesn't matter. He is all of us and we are him.

Not one of us is invincible. Whether we die in old age or die young, the end result is always going to be death.

I am reminded to love life and to cherish it, even in the difficult moments. Because a difficult moment is still an alive moment. It's still ours.

I feel challenged to be aware of my own breathing. The one thing we take advantage of more than anything else. In, out, in, out. A heart beating, a brain creating thoughts, lips that open and speak.

Today may be our only day to love people, our only day to make a difference in our sphere of influence. Let us be oh so grateful.


You don't know the first thing about tomorrow. You're nothing but a wisp of fog, catching a brief bit of sun before disappearing.
James 4:14

Man is like a breath; his days are like a fleeting shadow.
Psalm 144:4

Show me, O LORD, my life's end and the number of my days; let me know how fleeting is my life.
Psalm 39:4

This kid had likes, dislikes, friends, a family. He was probably planning for his future. And now he is gone.

It happens everyday, to so many people. Let us value life and the gift we have in it right now, at this very moment.

Celebrate.

Thursday, June 28, 2012

Flare

I had a very blessed, lovely day and the migraine has decided to play nice for the time being. Instead I get the triple exhaustion and too fogged to do anything really mode. ;) I am not certain which I would prefer, as they are both equally disturbing in their own way.
I got a hair cut. Wayyyyy shorter than I am used to, but it feels so much healthier and light weight.
Goodnight, my friends.
XoXo

Tuesday, June 26, 2012

Migraine

Lately my headaches have come back with a vengeance. It started on the trip, a pinprick and suddenly two, and now it is a fill on assault to the head. In particular the left side. Behind the eyeball, which is always a blast and it hurts so very much to comb my hair or even put my hair up in a bun or a pony. No fun for this woman. But alas! Tonight I remembered that my mom had bought me these patches and although it hadn't made it go away, it sure is helping. Oh! And as I type that I remember that my sister in law sent me some migraine meds awhile back. Score!

Monday, June 25, 2012

What's in My Bag!

They do it in Us Weekly and I thought it'd be fun!

(Picture has been removed)

I carry numerous pairs of earplugs, various lipglosses, a comb (not pictured), disability placard, toothbrush and toothpaste, Aquaphor, pictures of Mylie, planner, Fibromyalgia photos that explain the symptoms to give to people, lotion, a hair clip, wallet, house key, an old note card with a favorite verse, Kleenex, tweezers, pens, gum and a scrunchie. Yes, I still rock scrunchies. Lately my scalp has been taking a lot of the fibromyalgia beating and it hurts to touch, comb my tresses, or even wear my hair up. Major ouch.

Anyway, that's my fun purse info. ;)

I always bring with me in a separate bag: my Bible, journal, more pens, a bottle of water, my daily meds, and whatever book I am reading at the time.

Learning to Be Still

I have always been more of a Martha, and struggled to be a Mary. Today I am choosing to rest and let the to do list slide. This is not easy, not for anyone who is a type A but most especially for the one with fibromyalgia.

I choose today to marinate on the words of Psalm 23:1-3 God, my Shephard! I don't need a thing. You have bedded me down in lush meadows, you find me quiet pools to drink from. True to your word, you let me catch my breath and send me in the right direction.

I am marinating on the sweetness of those words and pondering about how dehydrated I have felt lately. Constantly thirsty and drinking water like a camel. More then usual, and not feeling quenched at all. I can say that for my spiritual state as well. I want to always be so thirsty for Jesus that I can never get enough. Dying for a drop.

So today I choose rest and replenishment.

The laundry can wait.

;)

Sunday, June 24, 2012

Oh Yeah, I Have Fibromyalgia....


There is so much that could be said about my trip. It was a marvelous time with friends and family and especially with that sweet child that holds my heart.
Some highlights:
Spraining my bum ankle the day after I arrived.
Pain medication as a blessing which surely got me through the trip.
Ample time with my best little.
The cherry choking incident.
Eating foods only available there.
Friends and family.
Watching M's graduation from kindergarten.
Sleeping on the most comfortable bed with the most precious sheets ever.
Pretending to be dolphins with M.
Making amends.
Time with my lifer besties.
An unexpected overnight stay at the Hilton in Houston when we missed our connecting flight. They lost our bags too, with our meds, but they were returned.
M sobbing with her arm outstretched to me as she was carried away the night I left. Her words: "it's like our hearts are broken when we are apart and when we are together again we are complete."
M reading to me before bed!
Caring as ever, this sweetheart 5 year old made sure my sprained ankle was elevated and stood up for me like a mama bear when she thought my mom was laughing at me. "You're making fun of Auntie Janet because she has Fibromyalgia!"
The rudeness I experienced when sharing that I am disabled. One woman gave me an up and down dirty look on the plane and then gave me the biggest stink eye as I was being wheeled to baggage. Another woman at a flower shop snorted when I told her I am disabled and said, "yeah, you sure look like it." Sarcastic much? Yes, ignorance is alive. It's sad and makes me remember how much more I have to advocate for ALL invisible illnesses.
Making up songs and praying with Lits like we used to.
Being with my mom.
Not having ANY freak outs but for 1 Panic attack. Hooray!This is a HUGE victory!!!
God's favor evident the whole time, marked by our first flight where a child sat in the middle seat between me and my mom. Oh how Abba knows my heart! Me and the kid bonded over Transformers and gum. On the flight home we sat next to a nine year old boy flying alone to Mexico.
Feeling the crisp CA air and remembering where my roots are.
Bonding with Simmy. I love that girl.
Maddie and April Rose.
So much more!
I am beyond exhausted. In a way it was as if I took a "vacation" from Fibromyalgia. Oh, not really. It never goes away, but the joy of being with M and knowing it was going to go by in a flash mixed with adrenaline propelled me and I was more active then I had been in almost a year. Only for her though.
I even rode some rides at a mini carnival. Me and my best girl. Don't ask me how I did it because I could not tell you.
LOVE.
That was it. What pushed me forward when my bones grew weary and my insides begged to stop. My scalp hurt and stabbed and once I stopped moving it felt like my bones and muscles were all on absolute fire from the inside out, like a giant sunburn on the inside mixed with grinding bones and stabbing everywhere.
But I did it! And I am do thrilled and happy because life is NOT impossible and I kept my head. God, you are so good.
My heart is recovering. It is fragmented again, separated from M once more. Readjusting to this Fibromyalgia life is hard and I am feeling sucky about it. Trapped again. But I will face it and go forward. That is the only direction to go. My eyes sag and my body begs for rest. No more pretending to be a normal.
I am back to reality.
If you happen to peruse older posts and the photos do not show it is because I deleted them. A blog that I read regularly shared how someone stole her photos and made a fake Facebook profile with a different name but with the blogger, her baby girl and her husband's photos. Creeptastic.
Goodnight for now.

P.S. I was denied the appeal for SSI and Medicaid and now need to get a lawyer and appeal again. Please be praying. And I finally get to see a doctor or nurse or someone after almost a year without medical treatment! Hooray! It's a truck that comes by and provides services for those of us with no income. I need current thyroid tests and glucose, as well as a refill for heart medication and pain meds. PLEASE Abba!

Saturday, May 26, 2012

I'm Leaving on a Jet Plane....

It has been over 9 months since we packed up that U-Haul and drove across the country to this place. In that short span of time a lot of things have changed for me spiritually, physically, and emotionally. I've had to face some inner demons and process sickness in a more profound way, and I've had to let go of some faucets of myself that I thought were lifelong traits to hold on to.

My grip was greedy.

Now it is time for me to return for just a couple of weeks to the place I so desperately wanted to escape from. It sounds illogical but the feeling I have about going back is one of extreme fear and panic. There is little joy involved.

I don't feel ready, but I do know that God has a reason for me to go right now. I pray I will be open to whatever He wants to do through me and in me while I am away.

It is difficult to step away from this safe little cocoon I have settled into here. A much more preferable lifestyle for Fibromyalgia. There were hiccups and bumps, of course. It took over 7 months to get back any sort of equilibrium, and now I am heading straight back into the fray.

I liken it to post traumatic stress. I literally feel like I am going back to a place that violated me.... ripped me apart.

I have to wonder.... after 31 years of living in that one place... that place I called home... (except for my brief time living in Georgia)... is this what I have taken away from it?

Fear?

Anger?

Depression?

Panic?

What about all of the other good things? My family, my childhood, my friends, the kids. What of all of that?

Has it disappeared?

I don't think so, but I know that right now everything still feels too fresh. I don't feel ready. Not by a long shot.

But I didn't feel ready any of the other times God called me to do something, and yet it ended up being exactly where I needed to be.

Please keep me in your prayers, dear friends. That God would go before me and prepare the way, that my heart and eyes and mind will be open, that I will not give in to fear. That I will remember that I only have one authority (Jesus) and that I am not going back to what I left.... that this visit is temporary and I am not chained to anyone or anything.

I am free.

This is also the first time I will be traveling by plane since my official diagnosis'. I did travel once by plane in 2010 but that was when I still did not know what was going on and I still had expectation of getting 100% better. I am as prepared as I can be on my end... ear plugs, ibuprofen, heat wraps, but I still covet prayer for a smooth travel experience.

I can do this...

even afraid, I can do this.



Tuesday, May 15, 2012

Dear Little Janet

Dear Little Janet,

Someday you will be 32 years old.
You will love people with your entire heart, and sometimes the intensity of how much you love people will feel like it is breaking your heart in dozens of pieces. Keep loving anyway.
You will grow up so fast, and you will remember being a child and hearing your Auntie tell you to enjoy your childhood because it will be over before you know it. She will be right.
When you are 16 you will lose your Grandmother and it will change everything about you, but you will not know it. Instead you will drive home from the hospital after holding her hand as she took her last breath, and you will hug your stuffed Winnie the Pooh and cry as you listen to The Tide is High on repeat.
At 17 you will lose the child you carry in your womb, and you will not know how to deal with the grief. You will be too young, too naive. You will be hurt by someone and it will take you years to trust anyone again, but you will.
You will work hard at every job you have. You will make many friends and go through many trials. At 21 years old you will go to a church and the God you have believed in all of your life will become more then an invisible person in the sky when you meet Jesus. You will fall in love with Him and it will transform your entire life.
You will grow cancer cells in your cervix when you are 25 and you will wonder when you will bear children, when you will meet your husband, but God has other plans and He will bring a series of amazing, delightful children into your life. He will let you taste the sweetness of being a mama as you sing and play and teach and adore these kids. They will become your whole world and you will start to appreciate your own mom and all she did for you growing up. You will rock a baby to sleep and pray for these little souls as if they truly are yours because to you there is no distinction. God will entrust them to you for years and you will honor that commitment even when people tell you to get a real job or wonder why you don't work an 8-5. You will barely make any money but God will always provide. Always trust Him. You will get stressed out, but then God will change a life around you and remind you that your life is His. Keep going. You will be a life-changer even when you feel like you are not.
God will bring you to the Philippines and your heart will be forever wrecked for that country. You will feel more at home there than you ever have in America and you will sob like a baby when you have to come home. You will make immediate plans to return there, but life throws you a twist. Instead you will get sick.... very sick. At first it will be very dark and confusing and the most frustrating thing you will have experienced up to that point. You will get very, very tired and want to give up. Please don't give up.
In the midst of this illness you will lose your car, your job, your friends, your identity. Someone you trust will betray you, and you will encounter deaths of loved ones and many obstacles and extreme stress. You will have to leave the child you have raised for 5 years to move across the country and it will be the hardest thing you can ever think of doing. The child will tell you every day that she wants you to stay, that she feels safest with you, that you are her mommy. Her tiny palm will grip yours and you will feel like it will be impossible to ever be away from her. Your heart will shatter. You must move anyway. God will be telling you to and you must always trust Him above yourself.
You will move across the country with your best friend and it will be an adventure. Always be open to adventure.
Many times you will sit and sing to Jesus and your entire being will be so full of Him and all that He has blessed you with. Focus on those blessings when the sickness gets too overwhelming. You will start to write more frequently again and you will fall in love with nature over and over. You will want to capture every moment on film but that is impossible. Store those delights in your heart. Remember your friends, your family, all of the people and places and things that you have been privileged to have in your life. Honor your father and mother. Make the effort to stay connected to your childhood best friends because the older you get the more you will realize how valuable they really are. Love people more than you love yourself. Give your life away, and never regret.
Dear child, be confident in who you are. Smile with your whole face, and laugh as often as you can. All of those insecurities you have growing up will go away after you turn 30. It seems like a very long time, but it happens in a heartbeat. And no matter what you go through or who lets you down, don't ever give up hope.
You are strong. You will get through all of those things that will try to tear you down and apart. Stand firm, let go, believe, trust, soar. You are loved.




Sunday, May 13, 2012

Mother's Day

"What we have once enjoyed and deeply loved we can never lose, for all that we love deeply becomes a part of us."
-Helen Keller

Dear Child,
It was 15 years ago that I carried you and 15 years ago that I lost you. Lost is such a weird word. Lost. As if I were holding your hand and you suddenly slipped away never to be seen again. Lost as if you were a sweater I misplaced somewhere and never found. But that is not the case. I carried you inside of me, and although the world could not see, you were there in my womb.
On days like today I ache just a little more so. I miss you and I wonder how it would have been had you been born. I will never know the answer to that, but I can imagine to a certain extent. No matter. After years of untouched grief, I finally surrendered and faced the loss several years ago. I was too young at the time of it to really process what it meant to have you taken from me, but as I grew older I could not avoid opening the loss. And in facing it, I was able to heal.... heal but not forget.
And now I know you are in the heavenlies and one day I will meet you. I will cup your face in my hand, I will know your smile, I will hold you. For today, I remember you... and I love you. Fiercely, deeply.
I did not get to hold you, rock you to sleep, sing songs over you to hush your tears, but oh how I have loved you.
I miss you today and I miss you everyday.
Love,
Your Mommy