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.

 

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Sad Saturday

*In The Early Morning RainIMG_0430

It’s 12:33 in the morning and I’m eating Froot Loops, with some mini Shredded Wheat and a bunch of blueberries tossed in that lack flavor. The rest of the family is doing a volunteer ambulance run and while they are helping people I know the roads are slick, black ice lurks sneakily in the dark.

I have felt totally listless all day and night. I lack energy and for the past seven years of having Fibromyalgia, this chronic pain-in-the-ass illness, I feel my whole body and mind stuck in a ditch, in neutral, spinning my wheels, going nowhere. I stay in my light, colorful, flowered patterned pajamas all day, I don’t even have the energy to change much less go out. My nose is stuffy, I ache all over, I am a floppy “Raggedy Ann” doll without her cheerful smile.  I feel older than the old person I am. There is no energy within me. None. The word “lethargic” sums it up well.

Who am I and who am I not?  Or, are the physical limitations and limited time having energy really getting to me? Of course, this horrid, freezing cold winter never helps me, it makes everything worse. Every year I start the same sob story about wanting to move to Florida or California, maybe even Arizona. I say it every year but we are still here in a very COLD town on the East Coast. I don’t fit in but at 57, that is the very least of my problems. The divider here is youth and money, lots of money. I lack both.

I need to go to sleep soon, my eyes are just about closing, my tummy is full with children’s cereal and sugary milk to slurp from the light green ceramic bowl.  I love these bowls, I have them in all different colors, they make me happy each time I use one. I take a few delicately pale pistachio nuts from a bag that is already open. Food is very important to our family, especially to me. It is imperative that we like our dinners especially on Sundays.

While my husband is unemployed, we deny our pleasure of going out to eat except for special occasions. Generally we eat scrambled eggs with cheese, and toast, my home-made pea and lentil soups, with a loaf of French bread, my husband’s eggplant parmigiano, chicken in the slow-cooker, lots of pasta, salads. We will go out only once to say good-bye to our son, heading back to college. I am not good at good-byes. It’s easier for me to leave than to be left. It’s one thing I can’t change, I’ve tried. Now, I accept it and my family accepts it too.

I’m humming the tune that is in my mind, the one that is the title of this essay. It is soothing to me, I’ll try to attach it here for you. Good night everybody. Thanks for sticking with me on this cold, dreary night, while the rain pelts down on the windows.

Photo credit: LAF 2014

 

Did I Say There Was HOPE For Fibromyalgia? WRONG.

Flower alone

Flower alone (Photo credit: @Doug88888)

9/13/13

Earth to me. Earth to me. Calling all hallucinogenic hopefuls down to reality please. Yes, I know, I was one of them. Me, optimistic, me. Funny, quirky, stupid, friggin  me. What the hell did I know? DId you believe me? I believed me. I really did until I woke up in reality which was just recently. I used to think of the world as a good place but that stopped a long, long time ago, probably with September 11th. That shook me up and the world still keeps shaking me up and not with good things. I know, I’m a late bloomer and gullible as all heck. There will always be two different “Me’s.” Before and after.

I’m jaded, Jaded and faded and disillusioned. Know what my mother’s advice was to me? “Lower your expectations, “I did. No rah-rah speech from her which is not exactly her style to begin with. My dad used to be Mr. Educational Talk when he was alive, think positive, be optimistic, you can do it if you THINK you can do it. He gave “pep” talks to anyone who would listen and yes he believed it and I tried to believe it too, tried to change. But, at the end of his life he was terribly sick and depressed and didn’t want to get out of bed or listen to his favorite Viennese waltzes that had delighted him all of his life. He was a shadow of himself, a shell of a man, it went so quickly and so slowly at the same time. It’s hard to remember when he was last really happy, I have a photo of his birthday, I treasure that photograph. The birthday candles were lit, he was beaming with joy, but it was many years before his death.

I’ve gone to the dark side. Plain and simple. Life is about love and love is about abandonment. Gone. Hello, I am here. I love you. I now will leave you. Good-bye. You are born alone and you die alone. You should pretty much plan to be alone a lot in your lifetime because no one loves you like your mother or father does, or your spouse/partner. You love your kids more than anything, they are your heart and soul, the true essence of your being but it is not reciprocal. It can’t be. Their children will be the lights of their eyes, you need to stand back and make room for the next generation. You may still be in the picture but not upfront, from now on you are in the background and that is where you will stay, forever.

Remember that post I wrote on feeling blessedly numb and peaceful? Yes, that’s gone, it left as fast as it came. Had to do with children and my dead father and abandonment issues.  Just saying the word in my head brings tears to my eyes. Good old abandonment, am I the only nut job that has this umbrella issue? I would bet not. Life is scary sometimes, it’s the truth.

Many limitations from chronic illnesses: Fibromyalgia, Hashimoto Thyroiditis, I can not walk a straight line, my balance is worse than ever, my stamina is non-existent. I need to go into the city for an appointment to see my rheumatologist and I don’t have the strength to get there. Taking the train and a cab seems impossible, hiring a car service is ridiculously expensive and I can’t afford that. So, I keep postponing it which is the worst thing I can do.

I have to suck up my pride and ask my best friend for help, she’s already offered but I am not good at asking for things. I rather help than ask for help. So, today I have to promise myself that I will ask her for a ride to the city, pay for everything and appreciate that I have a friend I can ask albeit begrudgingly. I know I won’t get better, if anything I’m getting worse.

photo credit:@doug88888

written words copyrighted

Feeling Like Crap And Other Such Novel Events

Frozen Yogurt with Banana and Blueberries

Frozen Yogurt with Banana and Blueberries (Photo credit: planetc1)

An ordinary day, three loads of laundry,

Clearing my throat incessantly,

constant coughing,

a headache that won’t go away, top and forehead

swollen glands.

My dog, barking, throwing up water, three times.

Me, internal and external fatigue, Fibromyalgia or taking care of my sick child, combination probably.

Hard to move one muscle, I will it to move, it does not listen.

I call the far side of my bed “the office” too exhausted to get up, shuffle.

Imagining what it must be like to have so much money that money doesn’t even matter,

Can’t.

Worrying about our Mom getting older, all of us getting older.

Not driving as much. Reality. Stay in the moment.

Don’t meet worry half-way.

Sit. Listen. Quiet.

Old friends become past friends for me. Finally.

Goodbye you-know-who, I’ve cut the chain, I can sail away.

I value myself more, now.

We had great times but that was thirty years ago.

Friendships need to move forward, together.

What is there to miss when you had nothing for so long?

Happy 25th ANNIVERSARY to my husband and to me in October.

a lovely accomplishment, not always easy.

Life is work, kids, work is life.

Plain, unsweetened frozen yogurt with fruit.

slides down my aching throat with chilling ease.

A beautiful summer day.

An ordinary day...

An ordinary day… (Photo credit: ` TheDreamSky)

Playing ball with my dog, Lexi, at the park.

We are both exhausted now, lying together on the bed.

Her long, red body, snoring, my pale body tossing and turning.

Everything feels as right as it can, for this moment, this day.

There are no promises and certainly no guarantees.

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Heat Wave

Sad and worried old woman

Sad and worried old woman (Photo credit: SalFalko)

Sitting on my bed, logy, tired but I can’t sleep, nauseous but I can’t eat, I force myself to drink ice water.  I make attempts to go out just to leave the house for a few minutes but all it does is make me appreciate my air conditioning at home. I don’t do anything worthwhile at home, I’m certainly not baking, cooking, turning on the oven or otherwise doing anything useful. I have done my laundry but it is cool in the basement and that is my incentive.

I don’t care about anything, am I depressed? Sure, a little. The other side is am I happy? Heck, no. Still, there are no strong feelings anywhere inside me, good or bad, I lack affect and interest. I can’t even blame my Fibromyalgia or my auto-immune illness (Hashimoto’s Thyroiditis) on this, sure they make me tired but I don’t think they make me blue. The fact that my husband has been down, lacking energy, and very tired has not helped, I am worried about him. I’m sure we feed off each other but I know I will feel a little better if he is alright physically. Men have a hard time admitting their feelings, trust me, he is no different. I just think I am more persistent and as my children call me a “touchy- feely person.”

Books, my passion, pile up and remain unread. This is unheard of for me. I am not afraid, I am not anxious, I am not in a deep depression or a feeling high. I’m just sitting, on my bed, pecking at the computers keys, like a woodpecker on a tree or a house, repetitive, sometimes annoying, it’s just a thing they do, over and over again in the background, like me.

Should We Take A Moment To Mourn Together?

Mourner. Could be Isis mourning Osiris

Mourner. Could be Isis mourning Osiris (Photo credit: Wikipedia)

Dear Invisible Illness Sufferers:

I’m conflicted. I want to say that we have lost a part of ourselves, a physical and emotional part, do you think it is a good idea to get together in real or computer time to say good-bye to the people we once were? Have we done it ourselves? Or do we just accept and let it go? There is the before Fibromyalgia or Diabetes or CFS, Virus, Autoimmune OR fill in the blank disease________ and after. Think about it, it would be an acknowledgment of our former selves, our loss and our lives now. We mourn people we loved; I am not the same person I was before my father died, I view my life “before he died” and “after.” Maybe we should have a ceremony together for the people we became after our loss, as simple as being silent for a minute at a designated time?

I guess this begs the question: do we ever really accept it 100 percent? We make do, we understand but it’s a way of life that we have lost, forever. I don’t believe that it will ever get better in my lifetime or that there will be a cure. That’s just my opinion. A wonderful approach is given in a book by  Toni Bernhard called “How To Be Sick” which is a Buddhist inspired way of living with your illness. It will teach you things, no other book will teach you.

It has taken me years to truly accept Fibromyalgia, chronic pain and an autoimmune disease called Hashimoto’s Thyroiditis, my activities are now severely limited. Part of my energy used to be used defending myself to people who thought I was out of my mind or a pill popping junkie. Sigh. I can reassure you I am neither of those. Realistically, who would WANT to be like us? Does it sound glamorous to have no energy and to be in pain constantly? It’s not like we take magic pills to make us feel great, there are no pills that take away the pain. In fact, we don’t even remember what pain-free feels like. Of course there’s Fibro Fog but that’s a whole other blog post.

After the imaginary designated time where we mourn our former selves, we give our thanks,  grateful for the life we DO have, for the cyber friends that are in the same situation that UNDERSTAND and for the body that still exists and for the many blessings we hold in our hearts.

Tell me what you think, I’d love to hear from you.

Banana Milkshakes

'Cavendish' bananas are the main commercial cu...

Image via Wikipedia

I feel really poorly again today and I don’t know why. Every step hurts, every joint aches, every muscle is stiff, and I’m not hungry, which is definitely unusual. The windows had been open with fresh air coming in but I missed the comfort of the cool air conditioner and a cozy blanket and the room swaying like a slow-motion ballet. My head is pounding and I feel weak, it’s hard to move, hard to think, I feel like throwing up but can’t.

I tried Alleve for my body aches and headache but it didn’t help. I always question and try to diagnose my ailments and when I come up with no new answers, I sigh and breathe deeply and think “Fibromyalgia Flare?” Or maybe it’s the flu or too many allergens, a virus or just a few bad days. At this point I don’t care what it is or what it is called, I just know I am back in bed, with my dog near me and my mood, weary. I’m tired of being tired and achy and I want to slip into my sneakers and go places, see people. Instead, I am alone with my book but I haven’t read one single page.

I tried so hard to heal myself and I made a banana milkshake, with very ripe bananas, milk and ice and sipped it slowly to try to soothe my spirits, to hydrate myself with bright and shiny, nutritious food. It didn’t help and I am disappointed; I thought for sure that the banana milkshake cure would help me. I tried to listen to music and sing but I just couldn’t stand to listen to the music, so I stayed silent, listening only to the beating downpour of rain attacking my windows. I can’t even think of leaving my bed to help out with driving and that makes me feel both guilty and drained; my head pounds harder, my whole body feels hot and it burns like a slow-cooker, constant with a warm temperature.

Last night I felt worse than today and I tried to cure my evening with chocolate. There’s a lot to be said about half a big pack of M & M’s at the end of a very long day. I chose each pretty color to pop into my mouth and crunch. I know it is not right to treat illness and malaise with food  but once in a while, the cheerful colors of M & M’s soothe me, the endorphins kick in and I go to sleep.

Perhaps tomorrow I will feel chipper and I will wake up happy, my head and eyes clear and more energy in my body. Maybe my legs will swing over my bed and I will greet the day with enthusiasm. But if not, maybe it will happen the next day or the one after that. If I still feel the same way I will eat the rest of the pack of M & M’s, make another banana milkshake and begrudgingly call the doctor. I will have to go in to see her and she will most probably tell me “it’s viral, go back to bed and drink plenty of liquids” as if I didn’t know that already.

We Laugh, We Cry

6/24/10

Last night, on instant chat, I talked with my friend P. for a long time. She and I are sisters in this crazy world of  chronic pain and difficult, unusual symptoms. The auto-immune disease that I call my own, Hashimoto’s Thyroiditis,  has its own set of innate problems, cells attacking cells. She has more physical pain and I wish I could take some away from her.

When we started talking, we were both subdued. We discussed our achy, ouchy  (I know that’s not a real word but it fits) symptoms. We were tired, tired of being tired, tired of being lethargic and uncomfortable. We talked about our day (some would consider this complaining but in our world it really isn’t). We were merely reporting and commenting on “the symptoms of the day” (you’ve heard undoubtedly about the ” soup of the day” well, this is different) and sleep deprivation, medications and diagnoses. We sound like we are pharmaceutical “reps” weighing in on different medications (we just don’t get paid for it and no free samples).

I got so frustrated at one point that I decided we were in desperate need of a new direction for our conversation. We decided on fantasies. (No, not that kind, get your minds out of the gutter!). We fantasized about a huge beach house (for me) and a very small one for her (so that when she cleaned it, it would be manageable. ) In MY fantasy, I don’t CLEAN my house, I just live luxuriously in it. I wanted neighbors, she did not; I kid her about being anti-social, she kids me back.

P. asked me questions about my ex-guru doctor and I updated her that the ex-guru doctor was still the guru doctor and I loved him (gee, had I not?) again, still, anew.  We’re a fickle bunch, we are.  She told me about natural remedies and I grumbled about how expensive they were and that I could barely leave the house to get the mail, much less drive to a costly massage or have a homeopath give me their remedies. (I’m sorry but I still have somewhat of a problem with the word” remedies”). We encouraged each other to plow forward, and she reminded me that “at least I had had one good day” which I was beginning to lose sight of in my quest for another.

We ended up laughing on both sides of two computers when I mentioned that perhaps we could have a “reality” show of all of us in the chronic pain/auto-immune/fibromyalgia/ CFIDS  and “other”categories.   I guess you had to be there but we took it so far that she was going to pitch my idea to producers. We LOL’d and ROFL’d so much that I had to help her up (virtually) from her  chair at home.  It was silly, it was ridiculous but it  felt so good to laugh and smile. In our world of chronic pain/illness  it’s an actual honor to be able to make one another laugh or put a smile on someone’s face.

I have been helped by so many kind people on this blog. But, I am the worst technical person in the world. It’s a wonder that I can even manage this simple blog (you’ll notice the elementary style with no photos or fancy techniques-sorry). If I were more technical, I too, would cut and paste and give awards (that are so special to me) to all my dear friends on this network (you know who you are!).

In my own way, I just wanted to tell everyone how thankful I am for the support, the humor, the  advice and encouragement and the friendships that have been made. We may have different symptoms but we have a common bond.   We take comfort in each other because only we can truly relate to one another. Doctors may sometimes not hear us, loved ones may not always understand us and we may feel a little crazy at times but, it’s our glue, our bond, that keeps us together.

Dedicated to all my blogger friends and to my friend P.

Barely Treading Water With A Hint Of A Smile

May 30, 20010

I think I may just have to live an old life, actually a much older life at a slower pace, a gingerly walk and question mark for every day. I may need to stop all the medications I take for my auto immune disease, Hashimoto’s Thyroiditis,  and inflammatory disease and  just live with even less energy, more aches and pains and even more inflammation. It wouldn’t really matter, I don’t think, because with all the medicines I take now, I still feel those things. I feel those things every day along with nasty side effects from the prescribed medicines.  I am not drowning in the ocean, nor am I swimming powerfully, I am mostly trying to manage to keep my head above water. I am not depressed or suicidal, I am not happy or ecstatic, I am just living in a state of symptom to symptom, energy for an hour, napping, reading, napping and tired.

I don’t notice much improvement, if any, from the medications to begin with. Can I go from bad to worse? Possibly. Can I learn to adjust to that? Maybe. The lack of energy is probably the worst part, I can live with aches and pains and holding on to staircases to get up the stairs. But,  when a beautiful day presents itself to me as a present, like today,  I cannot live, not knowing what or if I can do anything at all. It’s not fair to me but mostly it is not fair to my husband and I feel bad about that.

It’s Sunday of Memorial Day weekend, the sun is shining, the sky is a pastel blue, the bountiful green oak tree leaves are swaying softly. Birds are serenading us with their sweet high-pitched songs.  My husband and I had no plans for the entire day and he was up to doing anything. Go to the city? Go to a park? How about a museum? He was willing to do whatever I wanted to do and having my now familiar stomach ache (side effect of the medication) and being tired, I chose a nap. There was no back and forth discussion of which place to go or what would be more fun because of me. The bar is set so low that staying home sometimes is my only option.

I don’ t know what to do, other than go on one more expensive tour of doctors again. I will do it, I will try, for the last time. After that, I don’t know. I don’t say that with depression or despair, it’s an option I need to consider. I live a sedentary life now, truly, if I have two hours during the day that I feel energized it’s a good day. Lately I haven’t even felt that. I’ve been stuck at home, happy just to be alive.

Do I think it’s fair? Not really but I don’t think it’s unfair either. People live with far worse things. I find it frustrating and disappointing that I have lived life like this for the last three years. I awaken, each morning, with a question mark, to see if I feel better, but it hasn’t happened yet and I don’t see it happening anytime soon.  Is it is better to deal with a new reality and no side effects than be stuck with the old one?  I have no idea. What am I going to do? I honestly don’t know. I need help, more doctors, different doctors. no doctors?  I am feeling a little overwhelmed and I think what I need the most right now is a positive attitude and plenty of of good luck.

Dedicated to my wonderful husband, Danny.