I've been re-reading everything on my blog as of lately. Trying to recall everything that's happened within the whirling-swirling speed of this storm. My mind had somehow blurred everything into one giant event without pause and I know that's not how it happened in reality; it was very slow, building up, like soft snowfall at night when everyone sleeps, and then becoming so big, it avalanched - and that's what we saw. Good to have a refresher as to what happened, clear up my mind a bit. And be reminded of all the many blessings hidden within the waves that I was sure would wash over me and drown me at times, they seemed so massive and overpowering. But even so, I knew God was bigger than all of that...and so much more powerful than anything that I saw coming my way, so I was heavily leaning on Him for my next steps forward with Him. No not every step was made with Him, there was a time, like that time where Peter looked away from Jesus and focused on the storm instead- and consiquently began sinking into it.
Even though I wasn't experiencing the physical pain, because of the emotional pain that I'd never encountered before, I broke my sight away from the only one who kept me from drowning in my storm. When I began to feel like I was sinking, that's when I realized what I'd done. Of course He was still there, just as He's always been. Just like Peter focusing on those wind-swept waves, Jesus was still standing right there waiting for Peter to focus on Him. I think Peter learned fear in the storm was nothing compared to confidence in Jesus to save him (after all Jesus was the only one who could). It doesn't say it in Scripture, but you know they had to walk back to the boat together on the water in the storm. It was only once they were back in the boat did he silence the storm. Isn't that interesting? I sure think so. Likewise, I can walk in my storm too, but only as long as my eyes are focused on Him. You know why? I have strength in this weakness: Jesus is far above the surging of the storm, the waves and wind cannot compete with His greatness, and His power more awesome than any fear I can possibly face in this life. "I can do all things through Christ who gives me strength." What strength do I have apart from Him? The answer, my friends, is none.
I watched Soul Surfer while I was sick with a virus a little less than a month ago (a customer of mine was sick, sneezed on me and I caught her buggy...no hard feelings, besides she looked like she felt so crummy :/). I related to the movie when she said she had to find a new perspective because she was so close to her trial that she couldn't see around it. I figured, being a true story, if she could find a new perspective and live in her trial (if you saw the movie, she never does re-grow that arm after the shark attack). I couldn't think of how this would be a useful tool. How does a corrupt immune system that thinks my platelets are delicious, and a tummy that doesn't digest properly, end up helping me look at this differently? I happened to be flipping channels, bored after the movie was over, and I happened upon Joni-&-friends and she was talking about circumstances. I don't remember all of what she said, but it was about finding perspective in life's trials.
She said to try to think about things that others don't get to think about or know about. For her, it was being a quadrapeligic and having gone through cancer. She listed examples of amazing things she got to experience that no one else did because she was in her shoes...so it was special. She asked her viewers to think of something uniquely special that no one else got to think about. What about the first thing that came to mind? Platelets did, for me. No one thought a single thing about platelets when they got a papercut or bumped their elbow, or if they did, it was short lived. They take it for granted and quite honestly, back when I was oblivious, I didn't give it any thought. It was truly invisible. I knew they existed, nature's amazing natural bandaid within our bodies and the mandatory starting piece in any healing process, science taught me that.
Once I got deep into the danger zone, that's when my eyes were opened to that microscopic world. ITP is painless (can you feel your platelets? yeah, I can't either) and so I have to watch for visible clues that my platelets are there and my immune hasn't splurged on them. How long do I bleed over a papercut, a nose bleed? How big does a bruise get over carrying something heavy, bumping my elbow, sleeping (blood pooling to one side), getting a firm handshake, pat on the back, or strong hug? Do I spot little red dots that look like freckles on my skin? So I'm seeing what most people never get to notice.
I got to be awed while I was on immune-suppressing medication, watching how on the exterior how capable I was to do things. A high five, I could do that without a single thought, no matter the strength of the high five. A bear hug. A strong handshake. A hearty pat on the back. Rough housing with my neices and tickle wars. Playing volleyball. Riding a rollercoaster. Sleeping and waking without blood pooling on the side I slept on. Kneeling on the floor. Propping my elbows on my knees, palms on my chin. At the strongest point (once I was off the medication), being able to bring a sick friend some homemade chicken noodle soup and tidy their kitchen - something I NEVER would have been able to do without getting incredibly sick for weeks. Aren't those all freedoms that are taken for granted? I could go on to list several more. What an amazing taste of what normal really is like! I commented jokingly that I felt like Super Mario when he catches the invincibility star and nothing can touch him. Now that I've had that experience, I can't believe that I thought that this was normal. How, now that I've had that soaring taste of reality, was that normal at all? It dramatically changed how I thought of myself and the world around me. I believed myself weak and sickly as a child, teen, and adult, and that's just how I was. Others were strong because that's just how they were. Everyone is different and that is just who I am. Now my perspective has changed - I am weak and sickly because of a disorder and when my level is up, I am able to be that strong and healthy person I thought I would never be because that just wasn't me. I've learned that healthy-and-strong and weak-and-sickly are not traits of a person, its not who they are at all, but it is what they are dealing with. A big difference. And a huge difference in perspective.
I got to experience how that healthy and strong life feels for a season, maybe I will experience that again in the future? We shall see. I'm looking forward to the comforting deep bear-hug. Do you know that people get scared to hug me when my numbers drop? They don't want to bruise me so they don't hug me at all and look at me with this "I want to, but I'm scared to so no way am I going to" look. Here's a not so secret secret- I'd rather carry the shadowy hug-mark than go without a hug. (All I ask at this point is that your hug and handshake be more gentle than hardy.) If it was dangerously low again, I'd put up my hands in the stop signal as I did in the past and give warning to please hug me very gently or postpone the hug for a time in the future.
I have found new perspective on my diet as well. I found what I call "a hidden world" when I went gluten, dairy, and acid-free. There are so many in the community around me who are facing one or all or more of these diet shifts. The first place after their diet shifts, they enevitably end up at the store next. Most times I can pick them out of the rest of the shoppers. Their eyes and frozen stance point them out to me as I've been there. I remember researching all things gluten, dairy, and acid and holding that list in my hand and going in the grocery store thinking, "I can do this." ...and the doors open and I see all the shelves of food I can no longer eat....and I was lost in overwhelming thoughts of realizing how different this was and no ordinary shopping trip. So because of my own experience, I've been able to assist them. That makes a world of difference in their shopping experience. I point them out to products, scribble recipes and websites and cookbooks, ask what their favorite meal or a no item from their list that they love and if I can't find it on the shelves, I find it at home and next time I place it into their hands. For this experience, I am glad to be on my diet, just to help others. Or even if they don't need or ask for help, to be able to understand -partially- what they are going through. I say partially as I don't know at all what its like to have celiac or chrones or lupis or colitis. I do understand what stomach issues feel like, what dealing with others who don't understand but think they do is like, speaking to resturant managers about ingredients hidden within ingredients, knowing where restrooms are when I go places, and ultimately the misery of being glutened, or dairied.
During the Fall, I had been approached by my boss and given the assignment to create a gf df menu for our guests. We've had so many requests, but because we don't have the products to serve them, we've had to turn them all away...like everywhere else has turned them away. The only way to go is to pay a lot of money at a fancy restuarant (12 dollars for a small half-wrap sandwich, for instance...yes, the same wrap in its gluten form costs 2.99.) or to make it at home (which can be quite a process...especially when just starting out). So I accepted the task with volunatary eagerness. We would be the only place with ready-to-go affordable gf df food. I was entirely excited about how helpful this would be to everyone in the community. I began collecting and bookmarking recipes that I could re-work or simplify (after all, this would be our first time handling gf df items), then finding definitions and explanations of gf df eating (for our knowledge and reference). Then my laptop crashed and the dream to have the menu prepared and completed by Thanksgiving week went up in smoke. I cannot deny how bummed I am. None of our guests know about it yet, but I can imagine how glad and pleasantly surprised they would be to see gf df foods they could eat right in our department, made with love and ready for them to serve on their supper table. Mind you, we've purchased "May contain" labels that state that we can't be sure if it contains gluten or dairy...just like we attatch the "may contain nuts" to chocolate chip cookies. Its not made with nuts, but if you are allergic, its best to be questioning. Likewise, in the gluten-dairy world. Anyway, making this cookbook-guide was so strong a pleasureable idea that I could just taste it! Well, on the bright side, I have a year to assemble it now. And it will be ready for Thanksgiving week 2014, or so I am hoping.
Today I am watching it snow, with a kitty pinning my arm down (he's on top of my right arm, sleeping) and sipping chai-ginger tea. They did say it'd snow on the 7th...I guess they were right, lol. :P I think I am coming down with a sinus sort of cold. My stomach is especially not thrilled about it, thus the tea. Hopefully it goes away as quickly as it got here. A coworker had hugged me and then answering my question (how are you?) said she was coming down with a cold. I reminded her: my immune system... When she realized what she did, she covered her mouth and felt horrible realizing she most likely just gave me her cold. I tried to tell her it was ok and I forgave her. By the time I got home, I crashed on my bed, slept off 2 hours, my first nap since a few months ago when I needed the everyday nap. I woke up foggy-headed, heavy and aching. I started sneezing and my nose was drippy. I think I'm in for another battle. I'm thinking for now, I may need to start telling others when they approach me that if they have a cold, please tell me and as much as I love them, don't hug me. I am hoping not to lose weight like I did from the last cold, I don't have any cushion left on me, so anything lost will place me one step closer to 90lbs and the hospital. I'm going to fight this battle as fiercely as I can (again with the running in place and upon tiring, going backwards).
I don't have any physical pain as of right now, which is good news. Emotional pain is beginning the scaring process of healing. During the Summer to Fall, I encountered a situation I never thought I'd experience...and it ripped at me more than once.
~First with a day I thought I'd go into town and enjoy a sunny warm day. It was so beautiful, how could I stay indoors anyway? So I did. I'd dressed up all nice although I wasn't going anywhere and did up my face and hair just to do so. Window shopped, people watched, bought almond icecream in a bowl. Sat at a bench in the sun, enjoyed the warmth on my head and back, enjoyed my icecream. Then I watched a group of girls step out of a shop. I thought it would be amazing fun to get my friends together and have an outing too, what a good idea. Looked at a gentleman open a car door for his wife and close the door as he laughed at whatever she must have said. A mom pushed her daughter in her stroller past a stuffed teddy bear in the window, her cries and points that she wanted it. "Look at that!" I heard. The tone was so repulsed that I was made very curious to know, I turned toward the sound, focusing on the group of girls across the street. One of the girls was pointing, her face crinkled into this gross expresion, "That's hideous! Her bones are sticking out." I snuck a slow glance behind me, to be descrete. I saw the brick wall behind me, and felt a sinking feeling as the knowledge bit into me: No one was behind me. I swallowed, looking at nothing through blurry eyes. I knew they were pointing directly at me. "Some people don't care about themselves and just let themselves go. Don't look at that thing anymore. Lets go." "Yeah, that's so discusting. Lets get out of here. I can't look at it anymore." I snuck an upward glance, noticing others now glancing between them and me. The girl looked over her shoulder, giving her hair a toss, "Get out of here. No one wants to look at you, don't you get it, ugly?" "Lets just go. Leave it." One of her pals urged. They left, quickly. I could see the onlookers turn their gaze away from me and hurry away or look anywhere but at me. I placed my half-uneaten icecream into the trash and wrapped my arms around myself, feeling chilled and trying to hold in my tears. I'd never been called hideous in my life. I didn't know how to handle this. From elementary school to Highschool, I'd always been invisible. Apparently, not anymore. So I went into a little shop with pretty nails on the front glass. 45 dollars. I backed out and decided against it. I didn't need pretty fingers in order to be beautiful, not like that. In fact, that wouldn't make me pretty...it'd only stay an accent piece and accent pieces don't make the person, its just a highlight. I drove to the beach and sat in the sun, letting the warmth penetrate me and the sound of waves lapping against the sand to drown out the hurt...and I cried alone but not really.
~I was at the store, shopping when a child pointed at me and said, "Her bones are sticking out, Mommy." She pushed his hand down and told him not to point at others, and continued to whisper, looking at me, "Some people don't care about their appearance and they choose to let themselves go. Because she did that, it strips her of looking pretty, doesn't it? Its very sad." She eyed me up and down, then shook her head with a sigh and left. I was left feeling helpless from the conversation. Let myself go? I couldn't help my situation! I was honestly fighting hard to be healthy. And fighting incredibly hard to gain weight.
~I decided it was a nice day to be out and about, although nippy, and Fall leaves were swirling around. A good day for a hot coco, and taking pictures around town. So I stood in line anticipating a nice treat, camera bag slung over my shoulder. Started talking to the lady behind me in line, just having conversation. I'd noticed her daughter was dressed in a tiger outfit, so I was complementing her daughter (the daughter had asked me if I looked scary and clawed her hands with a tigery look on her face, lol what else was I to say?). I put my hands to my heart and feining surprised fear, told her she had a wonderful costume and definitely looked very scary. The little girl was very pleased. When I was done, the mother grabbed her daughter's hand and looked at me, "Well as a skelleton, you don't need a costume, now do you? You are all set for Halloween- bones and all!" And then she walked away, pulling her little girl with her who was protesting "but my hot chocolate!" Apparently she didn't like the looks of me so much that she was willing to deny wanting whatever drink she'd planned on getting, and denying the little girl a probably promised hot chocolate. If only she would have asked me to leave, I would have gone somewhere else, then the little girl could have had her coco. Why punish the little girl for it? And why be so revulsed about me? Why are people so disgusted? I can't help it and they assume its my fault. I blinked. Third time. Is this something I was going to encounter a lot now? "Hey, move toothpick, its your turn." A gruff voice behind me said. I ordered my coco and left for home.
Outside of these experiences, I only had a few good ones. And I fought to focus on those instead. One I'll leave you with as I've got to go to work now:
~A few years ago, dressed in my renaissance outfit (light blue with dark blue velvet, gold trim and silver and pearl crown), ordering drinks for me and my pals on our way to the faire, I hear a little boy shout to his mom (who stood right next to him) "I knew princesses were real! Mom look! Look!" and he was pointing to my friend and I. She was trying to turn him away and move on, but he was adimantly shouting in excitement, pointing at me even more, "Its Cinderella, Mom! Its Cinderella and I HAVE to talk to her! Mom please, please!" She gave in and brought her young son up to me and appologized. She was so sorry but her son was so eager and was being silly. I didn't think it was silly at all. I gave a little dip of my head, for the little boy. "You had something to say, young man?" I said, looking at him expectantly. He released his hand from his mom and reached for my hand, held it and said, "I had to tell you Cinderella, you are my favorite, and I think you are much more beautiful than you are in cartoon." His mom covered a laugh with her hands and whispered appologies to me. I shook my head, refusing her appology. He'd done nothing wrong. "Why thank you, that was very kind of you to tell me. I will treasure your words." He smiled real broadly, pleased then he looked at my wrist watch with a gasp, "Thats a good idea! You never wore a watch in the movie, now you won't be late for the ball! Go, hurry Cinderella! You don't want to be late to see the Prince!" Then he lowered his voice, "Or your ride will turn into a pumpkin again!" I couldn't help but laugh, "You are right. I better go. It was a pleasure to meet you and your mom." Her mom asked in a hushed whisper where we were going, and I told her. I could see it all make sense in her eyes and she whispered that she was sorry about her little boy and how embarising. I told her it was not at all embarising, little boys don't stay little and what he did made me smile. She nudged her son with a whisper to bow. He asked how and she bent to whisper into his ear: remember how the prince bowed to Cinderella? Like that. So he gave it his best effort in a sweeping bow. Not quite right, but very charming. I told his mom she had quite a gentleman in training, and she smiled, hoped so. I waved to them and we went on our way. What a remarkable little boy.
I'll write later! God bless! :)