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

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!

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.

;)

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!

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.

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.

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

Thank you, Amelia

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

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

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

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

No.

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

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

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

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

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

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

Pro-active or self-pity?

Only you can choose.

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

The Fibromyalgia Crusade

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

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

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

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

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