Chock-a-lock-a-love

Finding out that dark chocolate is actually a health food rocked my world. Yes, I said DARK chocolate – the darker the better. Milk chocolate? Nah. White chocolate? Oh, pul-eez. It isn’t even chocolate but basically milk, cocoa butter (has no cocoa) and sugar along with flavorings.

Amazingly, chocolate is an antioxidant which means it gets rid of free radicals which cause disease and aging. Heck, chocolate is even better for you than blueberries, green tea and pomegranates! All this goodness can lower your blood pressure, cholesterol, fight cancer, leap tall buildings in a single bound. You catch my meaning.

There is more but do you really need convincing beyond this?! Dark chocolate is satisfying in small amounts. It will take care of your sweet tooth with little damage to your waistline.

I’ll do what I have to to stave off aging and illness. Bring on the dark stuff.

What in the World Did I Do All Day?

As expected, I didn’t get a lot of comments on my last post. That is fine with me. I have to be at peace with God.

Lately, I’ve been wondering where time is going. I look around and see a house that needs vacuuming and dusting and straightening out in a big way and wonder why it hasn’t gotten done; why I can’t get it done.

As I sit here typing, I realize I could be doing the quiet parts of these tasks (Himself goes to sleep quite early because of his early shift) but here I sit watching tv and keeping up with my “social networks.”

Where did I go wrong? Let’s go over the events of today:

6:00 Woke up before Isabella’s arrival at around 6:20. Made tea and read my Bible.

6:20 Made Bells’ breakfast, prepared her snack for school and got her washed up and ready for school.

7:50 School bus arrived and I blew kisses to my little love. Instead of going back to bed, which I usually do for a few hours, I got ready for the day.

9:15 Started driving to my Weight Watchers meeting and returned the call I missed fifteen minutes earlier from my mother-in-law. Her defibrillator had gone off (for the second time in three weeks) and she needed to go to the doctor. My nephew drove her there and I skipped my meeting and took over at the doctor’s office (this has become my part time job).

11:30’ish At the hospital to have the pacemaker/defibrillator “interrogated” and found that the doctors feel an increase in medication will hopefully do the trick.

12:’ish Got Mom home and made sure she ate and drank a cup of tea. All she wanted to do was sleep so I left for….

12:45’ish …Weight Watchers weigh in…yea! All is good. 47 down and three to go.

1:00 Met a friend to pray for missionaries who are in creative access countries (countries where missionaries are not allowed)

2:00 Nap time for me.

4:40 Emerged from nap and spent time with Isabella and did absolutely nothing else of significance.

I could have gotten things done after my nap but the energy wasn’t there! Even thinking of doing anything makes me cringe inside.

Maybe some day, God willing, I will be blessed with energy. What I am thankful for is the ability to be do what I CAN do.

When I had to go on disability years ago, I never thought it would be for so long. The original reasons for this are still active and have intertwined with fibromyalgia. The times I am needed the most seem to fall on my “good” days and for this I am grateful.

What’s the saying, “Man plans and God laughs?” Ha! So true. I am so very blessed.

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Life Goes On

The last few weeks have flashed by in a whirlwind.

The Girl and Bells moved into a new place close by and we helped with that. Exhausting for all involved and we are hoping for the best.

Establishing Isabella in her new schedule at school has been difficult. Instead of being in the contained classroom all day, she has been entering school with the “neuro-typical” (N.T.) class (e.g. regular kindergarten class) and doing all her specials (library, phys. ed., music, etc.) with that class whilst doing her academics in the contained (autism) classroom. Her teacher from last year and the child study team leader felt she was ready for this. However, our nearly always happy girl has shown anxiety like never before.

Fortunately, her child study team leader saw her crying when she was leaving the gym one day and Bells was able to express that it was too noisy and too many kids and whatever else was bothering her. As a result, the team leader was able to ascertain which specials Bells felt comfortable. Things are going a bit better now. Maybe one more week will show a greater change. I want my happy girl back.<ins datetime=”2011-10-16T22:36:47+00:00″>

Yesterday, I gave Himself the day off and went to a wedding and reception with some friends. You know, I just might make a habit of this! We have gone to so many wedding receptions because of the number of children his friends have that it tends to get old. He is older than I am and some of MY friends’ children are of marrying age now. If he isn’t friends as a couple with my friends I will probably go the weddings by myself!

With all that has been going on, I am beat. When you don’t give in to the fatique of fibromyalgia, it will bite you in the bum. Today has been a true day of rest as in staying in bed until mid afternoon and doing no work at all. It’s a crazy balancing act but at least I am not experiencing a lot of pain. Yea! (That was last week when I didn’t give in! Flat on my back and sleeping for a day but that’s okay.)

All in all, life hasn’t been all that bad. Our bellies are full, we have clothing on our backs, a roof over our heads and a loving Father in heaven who meets all our needs.

Blessings to all, g

Ready for the Weekend

Oy, what a long week! Isabella spent two days home from school with a cold. Thankfully, it didn’t turn into anything worse like her mom had.

Saturday mornings are my time to sleep in and make up for the energy I expend during the week. Fibromyalgia doesn’t respect that have “places to go and people to see.” If I didn’t have Saturdays to recharge I would be layed out and unable to do what I have to do.

I am blessed that my fms is not totally debilitating. Some people sleep up to eighteen hours a day!

Next week is spring vacation and The Girl (my daughter who is a nanny) has most of the week off to spend with Bells. Yea! A week off for me!

It is supposed to be 80 degrees this Monday. Not good! Already the pollen count is high. Those who have been around a while know that hot weather, pollen and humidity are not my friends. Yuck.

I realize I am jabbering without a destination but, if I wait until I come up with something “deep” or amusing it might take a while.

Oh, Team Isabella walks again for the Walk for Autism Speaks. If you would like to donate, please email me and I will give you the information. We raise nearly $3000 last year!

Hope ya’ll have a great weekend, g

Light it Up Blue

April is Autism Awareness Month. April 2 is World Autism Awareness Day. On this date, homes and landmarks around the world will be lighting it up blue. My porch will have a blue light, the Empire State Building will shine blue, oh, so many places will shine the light on the need for people to understand the fastest growing healthcare crisis in America, maybe the world.

Please read this letter to President Obama and leave a comment so that he can see how important it would be to the nations, the world, to light up the White House blue: A Diary of a Mom Letter to the President- http://lightthewhitehouseblue.wordpress.com/2011/03/16/this-is-my-autism/#comments

Thank you so much, gail

Oh, no, not again

Something I might not have shared with you in the past is that, in the past, I have suffered from crippling panic attacks. It has been a while since I feared them but, this past week, that has changed.

Out of the blue, this past Tuesday I had a full blown attack. It popped up, seemingly, out of nowhere. I was so thankful that Isabella wasn’t with me as I have no idea how she might have reacted to her Booboo freaking out.

What does one of these attacks look like for me? The pressure in my chest makes me fear a heart attack. Sometimes some pain in my left arm almost convinces me. I tend to feel very hot. I believe I said out loud, “Oh, dear God, help me!” I left my seat in the living room and walked to the kitchen where I held on to the counter for dear life and remembered my training from the Claire Weekes book Hope and Help for Your Nerves .

Self talk:

You are having a panic attack
You have survived them before.
Accept that you are having this panic attack
Your heart is a very strong muscle and it will not explode.
Breathe and float through it.

Sounds too simple, right? Well, it took years for me to be able to work through this. Still, it is a horrible experience.

Why am I talking about this? Why do I talk about most things? To get the word out that we are not alone with our ills and heartaches. I could write about only rosey, wonderful things happening in my life and you could say, “Oh, what a lovely life she has!” Well, I do have a pretty good life but it is not all flowers and butterflys! It has ugliness in it. However, I always have hope.

Hope. How glorious is hope?! I know that this earthly shell is temporary and that I have a heavenly home being prepared for me. When I get there, I will not have panic attacks or fibromyalgia or weight issues. My Isabella will join me there and her autism will be left behind. My grammy, whose Parkinson’s stole her expressive face, will greet me with her smile. Oh, what a wonderful hope!

Life has been tough lately. My mother-in-law is in poor health and I am the only one not working full-time so I need to be available to her for doctors’ appointments. The Girl needs Himself and me to care for Isabella when she is not in school. Two things that have probably brought back the panic attacks.

Things will get better.

Blessings, g

Women, Take Heed

 
In these waning days of September, the month dedicated to ovarian cancer awareness, I would be remiss not to list the signs and symptoms of this silent killer:
 

Symptoms of Ovarian Cancer

Even in its early stages ovarian cancer has symptoms. Research indicates that 95 percent of women with ovarian cancer had symptoms and 90 percent of women experienced symptoms with early-stage ovarian cancer. Symptoms vary from woman to woman and many times depend on the location of the tumor and its impact on the surrounding organs. Many of the symptoms mimic other conditions such as irritable bowel syndrome.

The Gynecologic Cancer Foundation, the Society of Gynecologic Oncologists and the American Cancer Society, with significant support from the Alliance formed a consensus statement on ovarian cancer. The Ovarian Cancer National Alliance has endorsed the consensus statement, which was announced in June 2007. The statement follows.

Historically ovarian cancer was called the “silent killer” because symptoms were not thought to develop until the chance of cure was poor. However, recent studies have shown this term is untrue and that the following symptoms are much more likely to occur in women with ovarian cancer than women in the general population. These symptoms include:

  • Bloating
  • Pelvic or abdominal pain
  • Difficulty eating or feeling full quickly
  • Urinary symptoms (urgency or frequency)

Women with ovarian cancer report that symptoms are persistent and represent a change from normal for their bodies. The frequency and/or number of such symptoms are key factors in the diagnosis of ovarian cancer. Several studies show that even early stage ovarian cancer can produce these symptoms.

Women who have these symptoms almost daily for more than a few weeks should see their doctor, preferably a gynecologist. Prompt medical evaluation may lead to detection at the earliest possible stage of the disease. Early stage diagnosis is associated with an improved prognosis.

Please visit OCNA for more information.

The Spoon Theory

 
This was sent to me via email and really hits the nail on the head.  Just because a person doesn’t show overt symptoms dosn’t mean they aren’t hurting.  Let me know what you think. 
 
The Spoon Theory
by Christine Miserandino www.butyoudontlooksick.com
My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.
© Christine Miserandino
 

New Routine?

Being someone who doesn’t like change all that much, the fact that I have been thinking that I need a change in routine is a bit odd. It’s not that my life isn’t fulfilling because it is. It would be nice, though, to have some choices.

One choice I would make would be to be fibromyalgia free for a while. Usually, I don’t even notice the pain I live with daily. It is just part of my life and I accept it. However, when I have a night like last night, where the pain woke me so often, well, it would be nice to sleep uninterrupted. Also, I would like to be able to make plans without having alternatives planned just in case the fms flares up.

Another choice would be to have the concentration to go back to school or hold down a job. FMS works havoc on one’s concentration. Just the thought of going back to work causes anxiety deep within me.

I know that every school day I need to be available to pick up Isabella at 2:30. Do I have a choice in this? I could refuse but who would do it? Today, it would have been lovely to take a nap to make up for last night’s lost sleep. Yet, here I sit, with The Little Mermaid on for the fifth time in three days.

A friend recently wondered out loud what her life would have been like had she taken the path she originally planned. We won’t ever find out, will we? This is not the life I planned either. However, we are where we are and can either dwell on the past in times of doubt or press on and make the best of where our choices have led us.

Sometimes overwhelmed but always blessed. I suppose that sums up my life right now. That’s not too bad, right?