Thursday, In The Emergency Room…

I’m fine now. Okay, maybe not one hundred percent fine but so much better than I was on Thursday. I just FEEL like I’m alright in comparison with…you get the idea.

The left side of my head was wracked with searing pain, I could only describe it (and again this makes NO sense)  as oozing green jello on crack cocaine wearing a choker collar, fastened way too tight. The black collar was sharp, with metal triangular studs bursting through it about to swallow my skin. I have never had a headache, a one-sided headache, that bad, deep and unrelenting before in my life. And yes, in my imagination, there was blood, messy, crimson, creepy blood dripping from all my veins into my wide open mouth.

It was the headache that went on and off for weeks but got progressively worse.  Anyone living with Fibromyalgia is no wimp, let me start by telling you that. I’ve known all kinds of chronic pain but this was new. “Join the club” did not seem like an appropriate greeting. This stabbing, shooting misery aimed directly at the left temple and whole left side of my face were like launched missiles hitting their target every single time.

I've had a migraine/headache for 6 days straig...

I was also nauseous and my left arm tingled. I was my in my war zone. Finally, after a few hours of this non-stop torture, I agreed, I even urged, to go to the Emergency Room where luckily there were no lines of people waiting ahead of me. I was so grateful that there was only one family before me that I could have started sobbing at the registration desk.

I was already dizzy, so that when the security guard on duty started asking me questions,  I just had to pry my aching head, from my folded arms on the counter, and squint to answer what my name was, my address etc. that was all I could handle.

“Have a seat” never sounded so good to me before. My husband rushed in after parking the car and with his arm around me, my head nestled into his neck, I tried desperately to hold on to my sanity with all the pain.

When they finally called my name they led me to a room which happened to house another patient with the same symptoms, it was so odd. The nurse, the lovely and sweet nurse, was amazed at both patients’ similarities and if we could have laughed, we would have but at that time we still hadn’t received  pain relief and we had no sense of humor.

Grey's Anatomy (season 1)

Grey’s Anatomy (season 1) (Photo credit: Wikipedia)

After what seemed like hours, the ER doctor breezed in and while questioning a few things on my chart (not confidence inspiring At ALL)” What’s a stapedectomy mean? What does the drug Savella do?” 1) ear operation 2) a drug for Fibromyalgia.

Finally, FINALLY they gave me shot of some heavenly drug with a dose of benadryl and a huge bag of saline solution. They took me for a CAT scan and insulted my brain and my age which were not the same (never mind)  as they should be and left me to doze.

The medicine wore off quickly and while all I wanted was to get out of the hospital, away from potential staph infections (I watch way too much Grey’s Anatomy) my neighbor chose another shot (not that I blamed her) and slept it off. At one point I actually wore small blue hospital gloves that embarrassed my husband, shocked the ER doctor and amused me immensely.  I left to just get out of the hospital germ zone and they gave me a Percocet to swallow on the way out. All of this is true.

We left at 1:30 am and I stumbled to bed. The next day I had three, yes, three doctor appointments: First with the Rheumatologist that my husband was hell-bent on me keeping (I regretted that. 2) My Internist (follow up from the ER and 3) New (bad-ass) Neurologist because I had no choice and I lucked out with a great doctor!!

She was an impressive, straight forward, to the point and very, very nice and I begged to be her patient to which she smiled and said she didn’t care who I made my post office appointment with and half winked….We love her. (A big thank you to my friend Phyllis.)

So, now I wait, until eleven pm, a more decent time to go to bed than 8pm. I’ve been waiting for this time, this pain pill, and my pillows all day and night. I think of it this way, nothing could be worse than the headache of yore. It won’t happen again, I hope.

*All typos and grammatical errors are due to prescription drugs that I am NOT abusing.

This New Waking Up At 5: 30AM Is Seriously Getting On My Nerves

If (when) I get cranky during this post you can blame it on the lack of deep, constant, uninterrupted sleep. I’m cranky just thinking about it. This has been the fourth or fifth night in a row and correlates beautifully to the new medicine to raise my blood pressure.

True, I am not passing out and smacking my head getting bumps the size of baseballs but still, as any chronic pain or Fibromyalgia patient knows, sleep is our vacation. I wish I would be kidding but I’m not.

Insomnia

Insomnia (Photo credit: Alejandro (Lì Delfos))

Literally, going on vacation stresses our bodies more than staying in bed, not that it isn’t worth the risk at all. So, this old body now awakens way too early in the morning and today it’s not even a sunny morning but a gloomy gray one. Of course, I try to go back to sleep but it never works. Also, I can’t nap anymore.

Fibro: The Way It Is, make something better, make something worse. A trade-off. Ugh, I’m disgusted but with Fibro or any Chronic Pain Disease when aren’t we totally fed up? Usually I can handle it very well and I am NOT a complainer but now I am definitely cranky. If I can’t run around and have some semblance of a normal life at least let me enjoy my sleep and sweet dreams.

I guess that’s too much to ask, isn’t it? I’m giving this drug a few more days and then I will begrudgingly call the doctor as promised. I know he is just going to give me one pill after another to try but I wanted fewer pills not more. Granted, passing out at any time definitely had its disadvantages and the fact that no one call feel my pulse was a little scary but there must be something in-between?

Before you tell me about any type of herbs or supplements I am NOT allowed to take any, because of the chronic kidney problem. It’s time to do some deep breathing, now that I’ve written my frustration out here, hopefully I’ll feel better soon.

If not, there is always leftover pizza with grape jelly.

IF I had some.

Nestle Toll House Chocolate Chip Cookies

Nestle Toll House Chocolate Chip Cookies (Photo credit: fritish)

Since I LOVE FOOD and SWEETS maybe it’s time to make Nestle’s Tollhouse chocolate chip cookies. Just one, maybe two before bed with a very large glass of milk. Milk is medicinal, it helps you fall asleep.

That is, of course, why I will bake cookies today, all in the name of science.

Cookies? Check. Ice Cream? Check. Impulse Items? Check.

WELCOME HOME

 

I haven’t had the energy to go grocery shopping (something I hold near and dear to my heart) since early Spring. I’ve had all my illnesses flare up at the same time: Fibromyalgia, Hashimoto’s Thyroiditis, Syncopy, Fainting and Crashing, No Energy etc. For me? A tragic loss. For the supermarket? A major deficit. I’m not joking (as most of my readers will tell you) I LOVE FOOD, good food, strange food, NEW food and products. I will always look at every item on the shelves to see if I can spot any new items. I always can and I always buy them. I have no idea what the photo below is showing but that is a product I would definitely buy and eat, wouldn’t you?

Fastelavnsboller

Fastelavnsboller (Photo credit: Wikipedia)

 

 

 

 

 

 

My husband came along for this trip just to see if I could physically make it but once we were in the store I shot out with my carriage grinning wickedly. I don’t need a list nor do I want one. This is my home. I look at every item in every aisle and I know what I need, want or have to have for that week.

I knew it was a mistake NOT to go into marketing after I graduated college. I am the one to pick out the next new product, the new sensation, the new flavor, I’m a marketer’s taste test dream. Is it too late? I am at my prime, have your people twitter my people.

My mom says I have been like this since I’ve been five years old. I haven’t outgrown it and am proud to say my children, have inherited this hobby too. Even now, in their twenties, they love to go shopping with their mom.

For a while when I was younger (no, I’m not kidding) my then boyfriend, now husband, watched a show called Supermarket Sweep. We watched the original show every single night when it first came on. We toyed with the idea of getting married in a supermarket but somehow never went through with it; I regret that.

Stew Leonard’s is a great place to shop and fun too. I bet they would help if we could talk my (un) romantic husband into the idea. Right near the mooing cow! Don’t get me too excited, please.

Stew Leonard's

Stew Leonard’s (Photo credit: JeepersMedia)

Anyway, I bought: (New Product) lemon ice cream with mashed lemon cookies inside,huge, soft oatmeal raisin cookies (new brand) some new kind of skinny-ish popcorn for when you need something slightly salty but not fatty while you are watching a movie at home.

 

Also, I am now taking a new medication for my fainting spells, the fancy name is Syncopy also: Fibromyalgia, Hashimoto’s Thyroiditis, Narrow Angled Glaucoma, Eppiglottitis, IBS,  and others. I now have to have breakfast. I bought apple, blueberry and strawberry breakfast bars. This is the first time in all my life that I have eaten breakfast, my mom will be so pleased.

Usually, it’s just that steaming cup of coffee in my white Starbucks mug with half and half and one sweetener. I look forward to the smell and the first sip every single morning.

After that, I just go on with the boring details of my day. If I don’t feel the need to nap, I feel it is a personal triumph. Then our dinner conversation begins around 4pm. What shall we cook?  It doesn’t really matter, last night we had hot dogs, baked beans, and broccoli, the night before pizza but they are all precursors to the most important part of any meal: dessert. The lemon ice cream dessert:

Lemon

I dipped my spoon, my little spoon, into that new lemon ice cream, slowly, tasted a small bite, let it linger on my tongue and swallowed slowly, making sure I had a cookie bite with the ice cream. I was hoping for a dance sensation in my mouth or as my husband and I used to say “I hope it dances.” Did it? Oh yes. After half a cup of delicious lemon ice cream with bits of lemon cookies, I have found a new love. It’s so nice to be in love again, I feel tingly all over.

 

It’s Not Just Peanut Butter And Jelly Anymore (Food Cop)

I’m hungry, borderline starving. I know that’s a fairly regular experience for me but tonight I am ravenous AND I have to be careful ABOUT the texture of what I eat.

     

    a peanut butter and jelly sandwich, top slice ...I’m having a flare-up of everything that could possibly hurt, especially now with my jaw, teeth, head and neck.

    Having a vicious battle with TMJ  AND a cavity that needs to be filled, I thought I would be cautious and eat soft food. Since I was not feeling well, all day, light-headed, dizzy (reason still to be determined with the dreaded TILT test) my husband was kind enough to bring me a peanut butter and jelly (extra orange marmalade on the side to be mixed in) sandwich. For a side dish there was a tiny amount of mashed potatoes, leftovers from last night yummy restaurant. Oh yes, there was sour cream and butter in those “mashlers” as my dad used to say and as part of my family still says.

    The amount of peanut butter and jelly is crucial to any perfect sandwich, bearing in mind everybody’s personal preference. For me, more jelly and less peanut butter is the way to go. My husband and our friend John in the neighborhood, put staggering amounts of peanut butter on their sandwiches (“There IS NO such thing as too much peanut butter in our house”) John said. My husband, agrees. He slathers on peanut butter and measures it in inches. I disagree. I’m a more jelly than peanut butter kind of girl.

    I was having a bite of mashed potatoes, on the side, following a bite of my sandwich (the color of the jelly and the taste is carefully matched too) when I noticed a wonderful, soothing, comfort spreading taste in my mouth and stomach. After two or three bites of the sandwich and then the mashed potatoes I was sure that a combination sandwich would definitely ease my pain.

    Wait for it, my friend, Maureen, because you KNOW it’s coming….

    Hence, the peanut butter and jelly and mashed potato sandwich was born. Don’t prejudge, it is the ultimate in comfort food. The peanut butter and jelly or jam is cold or at room temperature and the hot mashed potatoes, sans gravy, are warm, buttery and rich.

    It was love at first bite. I finished every creamy morsel and would have eaten more if I had more to eat. I have had in the past peanut butter and jelly with cheddar cheese and once I had a peanut butter and jelly combined with tuna fish sandwich but those are a little too much and way less comforting than my new, favorite combination.

    Mashed Potatoes!!!

    Mashed Potatoes!!! (Photo credit: Manuel Alarcón)

    It’s a win-win situation. How could it not be fabulous? The greatest in comfort food.

    Sure, I make a mean chicken soup, or lentil soup, those are all   eaten mostly in the Winter. But this new combination?  Adding mashed potatoes as an ingredient? A genius idea of comfort in a bite. In every single bite.

     

    Smelling Change, Part 2 (2 weeks ago)

    Illustration of the Devil in the Codex Gigas, ...

    Illustration of the Devil in the Codex Gigas, folio 270 recto (Photo credit: Wikipedia)

    A follow-up to “Smelling Change” where I was highly optimistic….

    It was a long week or two that followed that one amazing day of innocence.

     

    WHAT THE HELL WAS I  THINKING?

     

    At least I thought things were going to change for the better.

    I know, nice try. The thought of happiness and joy, like being enveloped in a soft pink cotton shawl didn’t work at all. Maybe it was a lot of bull—-. Maybe I was just in a really good, positive, affirming mood that day. I’ve tried so hard, you know I have, but I went from gratitude and perseverance to sadness, depression and disgust. Now, I’m plain fed up.

    The fantasy of hope was delicious for a few days, like savoring a spoonful of a rich, vanilla bean ice cream twirling on your tongue, letting it melt and slowly swallowing. A tantalizing, sensual process. I lick my lips with the tip of my tongue.

     

    Now?

    I have lost all feelings. I’m in an empty, lonely place and that scares me more than any situational depression. I am a woman with great emotions, always, good or bad, high or low and now I feel like I am pressed in a corner, invisible, except for the dust bunnies that surround me. My husband will most likely vacuüm around me but not see. He prides himself on his vacuuming skills.

    Worst of all, now I feel nothing. If you can feel numbness, that’s what I feel. Things haven’t been going well at all. I feel alone, not the “we’re in this together” support that usually holds us closer together. We may watch television together but he holds his cell phone in his hand playing games and not my hand.

    Droid Apps Cell Phone

    Droid Apps Cell Phone (Photo credit: GoodNCrazy)

    This is the person who was my support system, my best friend in the world. Whoever is living in the same house now, I do not know. He’s a stranger to me. Yes, I am here, imperfect, with all my flaws and disabilities but I have raised our children and have done a great job of doing that. I need more in my life than emptiness, and sitting on my bed to eat alone. I have my dog who keeps me company, I enjoy that.

    I feel sad when I write this, is that a good sign? I know all couples go through good and bad times. It’s not the very first time this has happened in 25 years but of course, it feels that way.

    When my husband brought up my disability, Fibromyalgia, in a threatening/demeaning way, “when I get a job, things will be different because you are sick” what the HELL did he mean by that? AM I NOW supposed to apologize for my pain? Get down on my hands and knees, scrub the floors but not be able to get up?

    That was insulting to me and to my Fibromyalgia sisters and brothers, something I will not accept.

    EVER

     

    underwater fibro fog (unfinished)-altered jour...

    underwater fibro fogSigh,

    We both need to work harder to communicate more clearly. Over and over again. Riding the waves, up and down, in and out; there are never new problems, just old problems recycled again and again.

    The work is endless, the peaks and valleys are like that of an EKG. Everyone has problems, we go up, we go down like waves on the beach, we’ve been down together for a long time. Are we ever going to be able to get up? To rejoice? We, have lost all hope in the world, not in us, but in the world.

    We are both under a lot of stress and have been for many months, we both realize that. But, we are on the same team and need to rally, once again to support each other. To keep each others hopes and dreams alive.

    Sending Love Into The Universe

     

    I have just changed my life. It is Monday and I have just sent off a piece of the new me, courageous, CONFIDENT, CHANGE MY LIFE – ME into the universe, the big, bright blue sky.

     

    Angel-wings

    Angel-wings (Photo credit: johnb/Derbys/UK.)

     

    Yes, I’m taking a chance at doing something different. At least, I am trying. I’m sending this with a hug and a wish out to the atmosphere, with the Spirits that I believe in, with my Angels and my Dad to help me when he can “there is only so much he can do. His hands are tied.” I don’t doubt that for a second, I trust you implicitly. Just so you know. I love to imagine that you are not in pain anymore and that I can almost hear you laugh, and I can practically stroke your soft, sweet face, I would smell the shaving cologne as strong as you used to splash on your neck.” The perfume factory.”

    Angel

    Angel (Photo credit: Stephie189)

    I’m trying, to rev up, like the motors of the airplanes you used to love, worship. The rumbling has started within me. For the first time I am trying for lift-off instead of being grounded forever. I too, need a change. I need to get out of the shadows and into the sunlight and through my chronic pain. I can do that.

    I know I come across as pure emotion but as you know, deep down inside me, I am very, very strong, I will come through. I can handle what the world gives me, I should certainly be able to handle change, a new direction, movement, and climbing out of my comfort zone. I will do it with Faith and Spirit on my side.

    Let it begin. I’m Ready.

     

     

     

    Miley Cyrus, The Climb

     

     

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    Children: The Moon, The Sun And A Fibro Flare Up

    Sigh. Welcome. I know you are here even if I don’t have any interest in wanting you to be here. I know you have arrived in town, I can feel the physical essence of your negative energy from the follicles on top of my aching head to the bottom of my over-extended curled toes. It would be too simple to describe how I feel as “everything hurts” or use my example “it’s like having the flu every single day without the temperature.” People try to look sympathetic while they are trying to figure out if I have lost my mind. No, sorry, we are NOT crazy.  My husband was right, my balance is really off and I should have brought my pink cane that I use, on occasion. Fibromyalgia is no one’s friend.

    Moon

    Moon (Photo credit: Paul Garland)

    Thank goodness we have for best friends and Fibro Friends, we understand each other, we know how we feel. We don’t really need to explain. I don’t have to tell my fellow sufferers how I will feel when I have to spend over 6 hours in a car. Yep, you heard me 6 long hours to get home from visiting our amazing children and that’s with no traffic. It’s realistically more likely 6 and a half to seven hours but that burns like acid on the tip of my coated tongue.

    We traveled to see our adult children at their perspective colleges and I wouldn’t trade that for anything but on the way there we stopped halfway so my pain, Fibromyalgia, would be manageable. I assumed the same thing was planned for going home. It was not. How did this happen? I have no idea except that my husband did the arranging and he probably told me what he booked but with Fibro Fog, confusion and loss of memory, it did not sink in.

    In the end it didn’t even matter, we are now home, we saw our adult children and whatever physical pain I suffered was quadtrupled  every second I was with them. I might make different arrangements next time but I don’t even care. That’s what Love is. Simple, Straightforward, Us, Them, Family.

    Think of me, taking whatever drugs I have, including but not limited to, Benadryl,or  Xanax that might relax my muscles enough to get me through the trip, curled on the back seat cushions, going home.

    I adored seeing my son and daughter, and I would do anything for either of them. I love them so much, so very much that pain and stiffness and being out of sorts for a few days, will help remind me of why we went to visit.

    Sun Rays Dancing…!!!

    Sun Rays Dancing…!!! (Photo credit: Denis Collette…!!!)

    We went to visit the moon and the sun. Two things I cannot live without and two things that I enjoy simply by watching. My grown-up adult kids. They are worth every darn tingle, ache, pain, IBS attack and a host of many more symptoms; so when you hear me complain, please tell me to shut-up and to remind me of how worth it, it really was. Love, family love is, what matters and pain is just a side effect. It will get better, hopefully, in a few days. Just being around them, gave my husband and myself incredible joy. It was worth every single second of this trip and many more. We have GREAT kids, each one a delightful pleasure, we’re lucky to have them in our lives. We appreciate THEM.

    Thank you, kids, for having us, we loved seeing you in your home. It was great for all of us, especially me to show me how much both of you have learned and grown-up. I’m proud of you both. Really proud.

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    A Whisper Of Hope

    English: A photo of a cup of coffee. Esperanto...

    English: A photo of a cup of coffee. Esperanto: Taso de kafo. Français : Photo d’une tasse de caffé Español: Taza de café (Photo credit: Wikipedia)

    After the longest Winter I have ever been through, today was like an unexpected present. I woke up to the smell of hot, strong coffee and a sky of blue. The temperatures were in the high 50’s and for those of us in the North East, it felt like we were at the beach.

    It didn’t even matter that the temperature was supposed to drop dramatically tomorrow, I didn’t even care. Because what we were given was a look into the future, our bedraggled souls were given a treat, a tiny word that packs a punch: HOPE.

    I was able to go out and walk by myself in town, stop by a shop and wave to a friend, I noticed things that I haven’t seen, having been locked up in my bedroom for months.  A young woman with very curly hair smiled at me and I smiled back, I held the door for a very appreciative young mom with twins, she smiled her thanks, I nodded and smiled back.

    In one way, having children 21 months apart seems like a lifetime ago, now they are 19 and 21. I remember back to my double stroller, heavy, blue and white where my son and daughter sat and I pushed and pushed around the corner, meeting a good friend and her daughter.

    Life goes by so quickly, even for my kids, they tell me, but sometimes the days are so long.

    I came home today from a lovely dinner with my husband from a text message from my best friend, saying her uterine biopsy results were negative. I stood still, I was absolutely paralyzed with joy. And, I did what I usually do, whether I am sad or happy, I cried and thanked the Powers that Be.

    I left a message for my friend, I’m not sure she will understand the words but she will get the emotion, my tears well up even now when I think about it. She’s been through too much already.

    Spring is around the corner, I saw a red robin today and my husband bought me red tulips that we can plant once the ground is not frozen anymore.

    Thank you for this day, for waking up to a sky of blue to finding an apple scone to eat with tomorrow’s coffee, for all my blood work out of my hands and the time in-between.

    For a rare glimpse of what Springs looks like if we are patient.

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    Happy Second Birthday, Lexi

    2/16/14

    Dear Lexi,  Happy 2nd Birthday.  I love you, sweetie-pie. What a good, good dog you are,  so cute and affectionate.Lexi1

    You were a nasty, wild, hurtful puppy, weren’t you? Don’t look so sad, you didn’t know better. I know you are sorry. You were just an oral devil dog, digging those demon sharp puppy teeth into our arms and legs and clamping down. We probably tasted better than all the chew toys we bought you. Our welts gave you texture, right? Grandma kept telling us to “give you back” every single day but I couldn’t do that. Many trainers tried but they all said “You’ve got a really willful puppy there but if/when she grows out of it you’ll have a really great dog.”And, sweet girl that is who you have become.(Thank God)

    At about eighteen months, from one day to the next while we were busy doing other things you became a dog, an amazing dog. One that cuddles and protects us, hugs us and plays with us. You are the dog we always wanted, we just needed to give you and ourselves a little more time.

    It taught us all about being more patient, didn’t it?

    Right now you are sleeping with your head on my knee, nuzzling, a part of you always has to be directly on me.  You know each member of the family so well. With Fibromyalgia and Chronic Pain I do spend a lot of time in bed and that’s where you come, leaping on the bed, to be with me, happily. When “Dad” is around you get the leash, go to the front door, and start whimpering. You get instantly wild when your brother comes to visit, but we know he provokes you. He allows you to be wild, we don’t. Yes, I know, YOU are WAY cool when you rough house together.

    Oh, but when your sister comes home from college you hear her parking her car and you run to the front door and start crying until she comes in.  Yes, our daughter, your sister, will kneel down to your level and you hug each other while you cover her with kisses. That picture of the two of you on the ground stays in my heart forever.

    Have a Happy 2nd Birthday, thank you for choosing us at the shelter to be your family.Lexi2

    Love, Mom

    Mindfulness, Mine

    Clinical research shows Buddhist mindfulness t...

    Clinical research shows Buddhist mindfulness techniques can help alleviate anxiety , stress , and depression (Photo credit: Wikipedia)

    Today, I heard that heavy snow is in the forecast for the entire week and upcoming weekend. Guess what? I don’t even care! I am not even upset about it or cranky.

    This would usually put me in a tailspin or a slight depression but I’m not feeling it. What? It’s true, I’m not grumpy at all.

    In fact, all I can picture in my head is green grass and red, perky tulips. Who am I?  What on earth has happened to me?

    Everyone who knows me will attest to the fact that every single winter from start to finish, and that’s usually May, I complain compulsively about the freezing temperatures and how my body and soul aches every single minute. Granted, having Fibromyalgia, does not help matters at all but still, I hate, HATE cold weather.

    Yet, today in the movie theater, seeing Labor Day, watching a record of 7 previews,  I’m smiling. Right before I started eating my naked popcorn and drinking Diet Coke, an image appeared to me. I swear. I saw red tulips and green, green grass (no, not that kind.) I have not taken any hallucinogenic or any other kind of drugs and I am as surprised as you are. This lovely image popped into my head and I felt happy and calm.

    A view inside some tulips, showing the stamens...

    A view inside some tulips, showing the stamens and stigmas (Photo credit: Wikipedia)

    I hear the new buzz word is “Mindfulness.” I have tried to be mindful of where my head and emotional self are long before this became popular. I’m happy that it is a new “thing.” I need all the help and support I can get. I have tried not to worry in advance and not look back either.

    Maybe the beautiful sight of the red tulips and the green grass is my go-to symbol for my new mindfulness? At least it’s showing I am trying which is better than not. You can’t stop trying to grow, to learn and to teach yourself different things.

    I am going to try to hold on to this calmness as long as I can and even when I start getting cranky ( is it inevitable? ) I hope at least I will remember the photos in my head. Or, perhaps one of you will remind me that I did have that lovely image for real.

    I really am being mindful of that.

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