Tuesday, July 22, 2014

How Does It Make You Feel?



     It's been a long time (over 3 months) since I posted.  Life is still in flux and in flux tends to make me crazy.  I am a bit of a creature of habit.  I am a planner and when I can't plan, I feel a bit out of sorts.  That is not to say that I can't be spontaneous, I just need to know that I have X block of time to hang with these people and I will be home at Y time.  For me the biggest thing that hinders that is Chronic Fatigue Syndrome.  It's incredibly disappointing and frustrating (for me and the people involved) when I make plans and so very look forward to them and at the last moment a wave pure exhaustion washes over me and it's all I can do to get home and crawl in my bed.

     Back in December on the post A Long and Winding Road I mentioned that they were checking me for lung issues.  Well, to follow up; I have had a second CT scan.  The pulmonologist said that the lining of my lungs has a "broken glass" look to it and said that that is caused by Non-specific Interstitial Pneumonia.  My Rheumy said that couple that with what looks like rheumatoid nodules in the lungs the overall diagnosis is Rheumatoid Lung Disease.    I don't physically feel bad.  Still, as before, I wouldn't even know I had this has we not had X-rays and the CT scans.  In fact, I haven't even been sick-sick since I quit smoking (knock wood) so if anything, I feel better than I did 6 months ago or so.  The treatment for this illness is exactly the same as my RA: Immunosuppressants and NSAIDS to try to prevent further damage.  My rheumy said that there is something else that we can try if this fails but as always it's a game of "hurry up and wait" for this offshoot of the RA.  

     When I shared this info on Friday my dad popped on Facebook Messenger (where my family talks ALL the time :-) ) and asked me about the diagnosis.  He then asked me "How do you feel about that?"  At the time my reply was simple:  "I feel like I am tired of hearing "there's nothing we can do except watch and see" I am also flat worn out from the cortisone injection and blood work. I swear she put knockout drops in there-lol"
It's true, I am tired of all of these "sub-diagnosis" surprises.I am tired of blood work every 4 months.  I am tired of my body rebelling against me.  I am tired of dieting and still gaining weight.  I am tired of being so tired I just can't exercise.  I can't imagine how tired of all of this that people who are less "stable" than I am are feeling.  .

     What struck me last night in thinking about all of this is that while I have a truly wonderful support system who look out for me and love me, I don't think anyone has ever asked me that question in that context before.  Oh, they often ask me how I am feeling physically and are truly interested in the answer, I don't think anyone has ever asked me how I feel about all of this stuff and the prognosis' that go along with each illness. Consequently I think I have focused on how I feel physically and really haven't take the time to explore how I feel about the internal rebellion.

     I don't mean I have never had a "why me" moment.  Trust me- I have.  Especially in the midst of a flare.  I have also processed the overall situation enough to know that I have to count my blessings or I will simply crawl in my bed and not come out.  On the other hand, I have never really stopped to explore how I really feel about all of this.  At this point, I just don't know.  I think it's going to take some time for me to get inside my own head and figure it out.  As I tend to compartmentalize, it's going to take some work.  The bad thing about that is that I am heading dead into my "Rush" period at work and from now till Labor Day I will be crazy busy.  The good thing is, I will have the "quiet time" at home should I have the mental energy to do the work since the husband is leaving on Sunday to go away for Truck Driving School.  He will be gone for several months as he does the classroom stuff for 3 weeks and then has to drive with a trainer for a couple thousand miles.  I am okay with this and actually happy for him as this is something he has wanted to do for at least 7 years.  That means it will be just the puppies and I at home for a few months.  Another change of schedule, another journey but time to stop and just sit in the quiet and think should I be so inclined.

     So I wonder- has anyone ever asked you how you feel about all of this?  If so, what did you say?  I do want to take a minute to thank my papa for asking me the question that is sending me off on this quest.  Thanks Daddy!

  In closing; I was looking for my Facebook QOTD and I found this that applies here too:

“Everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way.”


― Viktor E. FranklMan's Search for Meaning

I think I will keep Mr. Frankl's words in mind as I sift through the emotional and mental part of having multiple incurable medical issues.  

Monday, April 21, 2014

Two good blogs to share this morning.

I want to share with you today a review of a book for us Rheumies by my friend Wren.  In the first line of the review Wren poses the question " If you could help someone else through the shock and dread of an unexpected rheumatoid arthritis diagnosis and its aftermath, you’d try, wouldn’t you?"  

This review made me stop and think, not just about my illnesses but about how I am approaching all aspects of my life.  The book "Your Life with Rheumatoid Arthritis", by Lene Anderson, is targeted toward new RA patients but from the exerpts in the review, both new and old patients could benefit from its wisdom.  

You can find Wren's review here.

On another note, if you want a daily dose of gratitude from a "real person"- my Dad has a blog called "Notes from the Sunporch".    He starts his morning in my favorite place- their sunporch- and takes great pleasure in the birds, the critters and the flowers that are in his gorgeous view from his recliner.  I hope you enjoy.  

Monday, April 14, 2014

From Zen Habits: On Making It Through Tough Journeys

I subscribe to this blog and receive great posts regularly.  This one in particular came today and it really resonated with me so I wanted to share it with you.  I have linked to the blog in the title so you can read more of Leo's writing.

Have wonderful day my friends.

On Making It Through Tough Journeys

By Leo Babauta

A reader wrote to me about a very tough journey he and his wife are setting out upon, and asked for some words of advice or motivation though this tough time.

Difficult times can be a test of our souls, and as such can be some of the most instructive times possible.

It’s easy to be happy and motivated when things are going well. But what happens when they fall apart, or unexpected troubles come your way, or things go exactly as you don’t want them to? What do you do then?

I’ll share some things I’ve been learning about personally, and give you a word of encouragement: you are stronger than you think.

You’ll go through difficult times, and suffer, and learn. And come out stronger and better at the other side.

There are four things that I’ve been learning about that help me through tough times:

1. Happiness isn’t outside of us
We often seek happiness outside of ourselves, through pleasure (food, shopping, video games, TV, Internet, alcohol, cigarettes, drugs) or other people (the person of our dreams, approval of others, social networks) or big life goals (travel, creating a business, art).

But I’ve learned that none of those things actually makes you happy. Sure, they can give you a boost of pleasure or joy, but it’s temporary and soon you’re looking for the next thing that will make you happy. This leaves you in a constant state of seeking pleasure, distraction, approval, comparisons to others, and so on. And it doesn’t result in contentment.

However, if we realize that happiness isn’t outside of us, but actually comes from within … then we can always access it. What is the source of this inner happiness? I find that I can do certain things that make me happy: being grateful for who I am and what I have, learning about myself and the world, playing and being curious, thinking about others and wishing them happiness … these things might be tied to external things (what I have, other people), but they are available no matter where I am, what I have, who is in the world.

And they can help during a tough journey. If you can find happiness inside you, then no matter what’s happening externally, you can access this source of happiness. You might lose your job, get sick, lose a loved one, have to go through a difficult medical procedure, go through a divorce … and you can still find this happiness. It’s there if you choose to use it. The external circumstances of your life matter, but they don’t take away your true source of happiness.

2. Embrace your entire range of experiences
Too often we want just a small range of experiences — the good things, the comfortable things, the experiences that make us feel good about ourselves. And yet, reality is different. It gives us a lot of different kinds of experiences, from anger and frustration to joy to pleasure to coldness to loneliness and grief. These are all part of our human condition, unavoidable.

So we can rail against the injustice of having to lose something we love, having to go through difficulty, having to be lonely and sad, having to be treated unfairly. That will just lead to more unhappiness.

Or we can embrace the entire range of our experiences. That will include all our emotions, all our joyful moments and painful ones and everything in between. Life is not just the warm and beautiful. It’s all of it.

Embracing these experiences means taking everything in with open arms, being vulnerable to whatever happens, being compassionate with ourselves when things are hard, giving ourselves some kindness and love and gratitude no matter what happens. It means accepting what is, and accepting ourselves as we are, not trying to mold ourselves into the perfect human, whatever we think that may be. Not trying to mold our lives into the perfect lives, whatever we think that may be.

This isn’t easy, I’ll admit, but this kind of openness leads to much greater happiness with life.

3. Renew your gratitude
Our lives are filled with miraculous gifts, and we are constantly taking them for granted, and complaining that life isn’t better. I do it myself, all the time. But when I catch myself doing this, and remember to be grateful, life is suddenly so much better.

Is your job boring? You might be grateful you have a job at all, a roof over your head, food on the table. Are you unappreciated? You might be grateful you have anyone in your life at all, perhaps some loved ones.

You have life. This is such an incredible gift.

You might be grateful for your health, if you have it. Or you might not have perfect health, but you have legs to walk on. If you have no legs, perhaps you have eyes to enjoy the sight of a cherry blossom or sunset. If you have no eyes, perhaps you can hear music. If you have none of these, perhaps you can still learn things from reading in Braille. Imagine being without the joy of Tolstoy and Shakespeare and Cervantes! We live in an amazing world, no matter what our circumstances.

And for anyone reading this (myself included), we need to think about how incredible it is that we have computers, and smart phones, connected to a powerful thing called the Internet. We have comfortable homes, great food, fairly good health, books to read, gorgeous nature all around us, people who love us. That’s quite miraculous, and yet we take it all for granted.

When times get tough, you might not have all of this. But you still have a lot to be grateful for.

4. Find Lovingkindness to yourself
As we work on embracing the entire range of our experiences, there will be some difficulty. It’s not always easy to allow ourselves to be sad, scared, frustrated, or grieving.

How do we live through these experiences without giving up?

We find compassion for ourselves, kindness, love.

Suffering in all kinds of ways is part of our experiences as humans. We suffer, in ways small and large, and we want to be happy. We all have that in common.

And so accepting our suffering and desire to be happy as a part of being human … we then turn to wanting our suffering to end. Wishing ourselves happiness and wellbeing.

This is kindness and compassion for our suffering selves. It’s not feeling sorry for ourselves, but wanting ourselves to be happy.

Whenever we see pain and fear in ourselves, we can recognize it, and wish ourselves happiness. Wish an end to the suffering. Be kind to ourselves.

And then, having given ourselves this kindness, we can turn to the person next to us, and recognize they are also suffering and just want to be happy. If they lash out at us in anger, recognize that they are just suffering like us. And wish them happiness, wish an end to their suffering.

In doing so, we can melt our own hardened hearts, open ourselves to others, embrace them with love. And the journey, as hard as it may be, becomes better.




Friday, April 11, 2014

Brick and Mortar Guys



This little "ditty" was written by a bookseller at one of our stores.  Every one of us who's come across it is sharing it.  It feels SO very true.

Brick and Mortar Guys
by Jason Michael Howe
Barnes & Noble Store #02814
Pembroke Pines, FL
(And apologies again for unintentionally hijacking the other thread.)
A long, long time ago...
I can still remember how
those book stores used to make me smile.
And I know if I could go back,
I'd buy books there by the stack,
no matter if I had to walk a mile.
But Amazon, they made me quiver...
with every order they delivered.
Brown boxes on my doorstep,
I didn't have to take one more step...
I can't remember if I cried,
the first time I found one just outside...
I opened the box and looked inside...
the day... the book stores... died.
So bye bye brick and mortar guys,
it's just not fair with next day air and a lower online price.
Having people who would help me, man it sure was nice.
But online shopping has become my vice...
online shopping has become my vice...
Were you there in their store,
reading books while lying on the floor,
when an employee asked you to move?
Did you ask to charge your phone?
Leave a pile of books in cafe and only buy a scone?
Do you ever wonder why you're alone?
Well, I know that you loved their place,
high-end boutiques now fills their space,
What other stores are left to choose?
You should be singin' the blues!
All you had to do was spend a buck,
drive to their store in your pickup truck,
but now you're out of luck.
The day the book stores died.
You started singin'
Bye bye brick and mortar guys,
it's just not fair with next day air and a lower online price.
Having people who would help me, man it sure was nice.
But online shopping has become my vice...
online shopping has become my vice...
Now, for ten years we've been on our own
clicking Buy from the comfort of our home
But that's not how it used to be!
Employees sang for storytime,
an author signing didn't cost a dime,
and then they'd sit and talk with you and me.
But to kick them while they're down,
Amazon had to steal their crown,
No worries of tax evasion,
they've got bribes and other persuasion.
And while book stores closed up shop,
employees wished they could make them stop,
but now they're at Employment One Stop.
The day the book stores died.
Bye bye brick and mortar guys,
it's just not fair with next day air and a lower online price.
Having people who would help me, man it sure was nice.
But online shopping has become my vice...
online shopping has become my vice...
Helter Skelter up on Capitol Hill
Congress had submitted a bill
about collecting online tax.
It's odds were better than legal grass
The bill now looked for sure to pass
With Amazon, on the sidelines, all aghast.
Now poetic justice came to mind
What legal recourse could they find?
Former employees nearly danced with joy,
but Amazon had one more ploy!
They tried to open brick and mortar stores
thinking they'd do better than those before
Do you recall the final score
The day the book stores died?
We started singin'
Bye bye brick and mortar guys,
it's just not fair with next day air and a lower online price.
Having people who would help me, man it sure was nice.
But online shopping has become my vice...
online shopping has become my vice...
Oh, and there we were all in one time
A generation lost online
With no way to go back again.
C'mon Amazon, sell those books!
Amazon, you're just a crook.
Complacency is your best friend!
And as I watched on their newsfeed
Smiling faces filled with greed
No company born online
Could catch their lead this time.
And as flames spread on the forum sites
Booksellers read them on lonely nights
While Amazon laughed with delight.
The day the book stores died.
They were singin'
Bye bye brick and mortar guys,
it's just not fair with next day air and a lower online price.
Having people who would help me, man it sure was nice.
But online shopping has become my vice...
online shopping has become my vice...
I met a girl who had shelved their stacks
And I asked if they'd ever come back
But she just cried and ran away
I went down to my local store
Where I'd purchased books years before
A homeless man there said they took his restroom away.
And down the streets the parents walked,
their children cried, their tweens all balked.
But not a word was spoken;
their spirits had been broken.
Now no one comes at my behest
But I shop for books without getting dressed
If I think too hard I'll get depressed
The day the book stores died.
And we're all singing...
Bye bye brick and mortar guys,
it's just not fair with next day air and a lower online price.
Having people who would help me, man it sure was nice.
But online shopping has become my vice...
online shopping has become my vice...
Bye bye brick and mortar guys,
it's just not fair with next day air and a lower online price.
Having people who would help me, man it sure was nice.
But online shopping has become my vice...

Monday, March 3, 2014

Flitting Visions of Hope



   

     It has been a seemingly VERY long winter here in Kentuckiana.  It's the third of March.  I know the whole "In like a lion" thing.  It was a mere two years ago we had the horrible tornadoes that demolished Henryville and this year- ice and snow in the form of Winter Storm "Titan".  What in the world is going on with Mother Nature?  Have we finally ticked her off to the point that she's become irrational?

    That said- an extra day off with my puppies is always welcome, especially when I can get a little cleaning done around the house in the process.  I have been slowly spot cleaning my carpet over the last few weekends.  I can't do the whole thing at once because I can't cordon the dogs off from the entire carpeted world.  I am using the vinegar and baking soda method (works GREAT!) and so I apply it at night and let it dry overnight then vacuum in the morning- or vice versa.  The dogs want nothing to do with the vinegar smell so they leave the area alone.  I had noticed that the vacuum was getting sluggish but the husband has always dealt with all things vacuum related.  Not knowing when he will be by again, I decided to figure it out by myself.  Well- apparently I have waited too long and the canister (it's a bag-less vacuum) was overly full.  I pulled the canister of and stuff flew everywhere.  I let out a deep sigh, considered banging my head against a wall for a few minutes and then proceeded to empty out the canister, take it apart, clean all of the filters with hot soapy water and then sweep up the biggest part of the mess  and then lay down on the couch for a bit (hoping to take a nap) while I waited for the filters to dry.

It was still a bit early so the pups were still in their "morning wired" phase.  One was perched on one couch, one on the back of the loveseat watching the world through the living room window.  Both went crazy when the mailman came by and then we all settled down again and both of them were giving off occasional happy little "boofs" so I gave up on sleep and looked out to see what was interesting them.  At first I just saw birds.  Not unusual at all as they have been making their homes in the trees for weeks.

Then I saw them.  Against the background of the snow and ice, little glimpses of color.  Against the bricks of the adjacent buildings, little pops of white.  I went outside and there they were- butterflies!  Flitting from shrub to shrub, in between the buildings and back again.  The sun was coming out and the ice glazing the shrubs and trees was giving off a glare but there were the butterflies, swooping and streaming and chasing one another with abandon.  A sure sign of spring while we are covered in a blanket of snow and ice.  With a smile, I went back inside knowing that no matter how cold it is now, soon it will all be over for another eight or nine months and we can all get back to normal routines.  I know the pups are more than ready to be able to go outside without scrambling across the ice or being up to their bellies in snow.  I know I am ready to take them for nice long walks again.  I don't know how many snow days we have had thus far but I would happily give them up for the warmer climate and now I have hope that Spring will be here soon.


Monday, February 17, 2014

The Daily Good


I want to share a website with you that was passed to me inadvertently from a friend.  I have signed up for their newsletter and have really enjoyed spending time reading the wonderful stories of what normal, every day folks are doing just for the sake of making their part of the world a little better. The site curates stories from all over the world.  With the daily news being 98% bad news can't we all use some good news?  As I have said before, I have found that with all of the uncertainty in my life these last months it has been harder to find my gratitude place but stories like this help tremendously.  The story below was in my inbox on Saturday.  This is an example of their regular site content:

Chai and Love

--by Soma Basu, syndicated from thehindu.com, Feb 15, 2014

R.Sekar is extremely reluctant to even put on a shirt for the photograph. I point out to the hole in his vest. “That’s me,” he says bluntly.
I spot the frown on his face. He doesn’t like talking about himself, his family or the work he does. Extremely reticent, he sticks to his schedule of opening his tea shop on the Ponmeni Narayanan Street in S.S.Colony at 4.30 a.m. sharp and serves the day’s first round of steaming chai to about two-dozen watchmen who do night duty in the area. He runs the shop till 11 p.m. selling over 300 cups of tea, coffee and milk besides biscuits, cakes, laddus, murukkus and other savouries. Communication with customers is restricted to business only.
Yet the Meenakshi Coffee Bar which he runs with his two brothers in S.S.Colony is popular. Not for the knick-knack items it sells. Not even for the hundreds of cups of tea and coffee for which it is known. But for Sekar and his kind heartedness.
Daily morning Esaki, affected by leprosy, comes in a tricycle and stops by the tea shop. Sekar gives him tea in a disposable glass and some biscuits. The two never speak. In fact, they have never exchanged a word, except for once when Sekar asked him his name and age.
Eight years ago when he came the first time, says Sekar, I sensed he wanted to drink tea but did not have the money. “From that day, this appointment has continued uninterrupted,” he says.
If Sekar meets somebody who can not afford something, he reaches out wherever possible. For instance, he was moved by the plight of eight-year-old Sivatharini, diagnosed with blood cancer. Her poor parents cannot arrange nutritious meal for her as advised by the doctor. For the last three years, ever since Sekar was introduced to the little girl by a friend in the locality, he has been supplying milk and fruits to her whenever she is admitted to the hospital for treatment or is recuperating at home.
“I am reminded of my difficult childhood when my parents couldn’t manage even one meal a day for the family. I know what it means to starve and how difficult it is when your basic needs are not met,” he says.
Every Friday he unfailingly sends five litres of milk each along with buns and other savouries to three different Homes for special and orphaned children. The tea shop is 35 years old and is known to every resident of the area. But the silent service Sekar renders is not known to many.
“I am a simple man who wants to do little bit of charity because it gives happiness,” he insists. From days of nothing, Sekar says he has come to a position when he can give no matter how small. “There are so many people with so much money but either do not have the time or the inclination to help. God gives us in his own way and we find our ways to help others,” he says.
Quite regularly a motley group of school students gathers at his shop in the evenings. The children usually come asking for stationery items, notebooks and books. “I make a note of their requirements and get it for them.” Sekar never hands over cash but buys the item a person needs.
During the new academic session every summer, lot of poor parents turn to him for help. The soft-spoken Sekar never turns them down and helps them with the purchase of school bags, uniforms, lunch box, water bottles and any other item.
The earnings from the shop are divided among the three brothers. Sekar doesn’t keep an account of how much of his money he uses to help others.
“I am happy with what I have and can do with even less. I do not need more. What will I do?” he asks. He shows you only have to have a heart to help others.  
You can find The Daily Good here.   I hope you enjoy it as much as I have and a big Thank You to Amy Dixon for linking one of their stories on your Facebook page and leading me here.  

Tuesday, January 21, 2014

Just a quick note







It's almost Rheumatoid Arthritis Awareness Day.  What type of post would YOU like to see for this event?