Giving Tuesday – Pass It On

giving Tuesday

On Tuesday, December 3, 2013, give the gift of honeybees – or stoves for a village – or clean water – through Heifer International.

Instead of sending another sweater to Aunt Harriet, send her a smaller gift  – or send her a card with a nice note, telling her how grateful you are that she taught you how to share. (If she really needs that sweater then buy it, too.)  And then donate a flock of ducklings in her name.

Duck eggs are a source of protein and the sale of their down brings income to a family. A starter flock can yield hundreds of ducks. Selling the excess ducks and their eggs can give a family enough income to send their children to school.  What a gift! Aunt Harriet will be so proud.

This year on Giving Tuesday I’m supporting the efforts of Heifer International. It was founded by Dan West, a relief worker during the Spanish Civil War. He quickly realized that it was not enough to simply feed the hungry, one by one. 

His idea was to provide the survival basics like livestock, trees, seeds, and training in sustainable farming to families. The organization now serves over 40 countries, including the United States, by providing the goods and the training for people to lift themselves out of poverty.     ducklings

Heifer’s Passing On the Gift® requires each recipient to share one or more of their animals, along with the training they receive from the organization. This simple act multiplies the original gift and empowers the recipients to become donors. The training received teaches them to manage the resources supplied for long term success.

From an early age I was taught to give quietly without announcing my intentions. This was meant to be a sign of humility and true charity. That made sense to me. And now, I’m broadcasting my intentions throughout my social media accounts.  I’m not totally comfortable with this. So why do it?

To encourage others to consider giving. If not through Heifer, Int. then go to Giving Tuesday for ideas. Or contact a local community organization and ask them what they need. Lets raise our collective consciousness and challenge others that we know – or have never met –  to share a little with others.

So I’m buying honeybees and a flock of ducklings. But there are so many other possibilities. What will you do?

P.S.  Just in case you missing Giving Tuesday on December 3, you have my permission to help others be self-sufficient any day of the year.  And let us all know what you did by posting a comment.

A Battle with Rheumatoid Arthritis

RA awareness

Most of the time, my battle with Rheumatoid Arthritis (RA) is not with the disease but with  doctors, insurance companies, and mail order pharmacies.

Doctors only treat what they can see – either with their eyes, with MRIs or ultrasounds. If I don’t find exactly the right words to persuade my rheumatologist that I’m having difficulty functioning on a daily basis because of pain and fatigue, it may be another three months before I have another opportunity to state my case.

I recognize her doubtful glance.  The lab results are negative for the rheumatoid factor and she sees no visible signs of swelling or redness in my hands. Which, by the way, is the only part of my body she examines.  I wonder about this. RA is a systemic disease, not merely a disease of the hands and feet.                                                                                                                                                                                                                   protein-biomarker

After agreeing with the doctor that there is no visible sign of RA, I reaffirm that I’m in pain and having difficulty sleeping. Each time I roll over in my sleep, I hurt. And it wakes me up.  I remind her that I’m seronegative for RA.  It doesn’t show up in routine blood tests. I’m not certain if it was the look on my face or the words I chose, but she informs me that there is something else we can do. A biomarker test that may uncover any disease activity.  I agree hopefully. I want to prove to her that I’m not making this up. The Vectra DA disease activity test confirms that even with the medication I’ve been taking for almost two years, there is still high disease activity. I’m relieved and concerned about my future health – all in the same breath.

My doctor wants to double my dose of Humira. Again, I agree hopefully. But the next battle begins.

After waiting two weeks for my new prescription – and numerous lengthy calls to the online pharmacy – I am promised a shipment in two days.  It never arrives.  After even more numerous lengthy calls, I discover another barrier.  The insurance company refuses to pay for the new dose of Humira. I have no medication left and I’ve informed everyone of the urgency.

A message is left for my doctor to call the insurance company and place a quantity override on the medication. I receive a recorded message from the pharmacy that states “they’re working on it”.  Too tired and discouraged to make more phone calls, I wait again for medications that are necessary and yet delayed by unknown forces.

These battles leave me with only a small amount of energy to fight the autoimmune disease that is attacking my system from the inside out.

pain chart

And these battles are not unique to me.  Ask anyone you know who has a chronic illness and you will hear the same stories. The name of the doctor, the medication, the online pharmacy, the insurance company are not important. It’s a universal problem.

Medications are delayed because “Patient Care Representatives” don’t follow through. Patients are not kept informed. Had I known about some of the barriers to receiving my medications I would have made the phone call to my doctor much sooner. The system is flawed because it lacks seamless integration. The pharmacy states it is not aware of barriers until it places the medication in the system to ship. Our medications are being shipped by trial and error.

After a break from all the phone calls, I’ll be back full force and taking command of the battles.  Onward!

Progress Report: Take Back the Evening

progress

It’s been almost two weeks since I began my experiment to have more control over my time in the evenings.

My free time is limited. I’m sure others can identify with this shortage of time. After work, a quick dinner, a quick clean up, and then only a precious few hours to catch up with family and friends and to pursue my own interests.

A lot of us deal with this shortage of time combined with a shortage of energy due to autoimmune issues. And if I sit down in front of the TV, it’s almost as if that electronic box is siphoning the small amount of remaining energy from me. Robbing me of my time.

There are programs that I choose to watch. I have deemed them worthy of my time and feel a connection to the characters. The writing is witting and engaging and the actors are endearing. These few shows are not a problem for me. I can plan my evenings around them or Tivo them for viewing later.

The problem I faced was my inertia. After a favorite show ended, I did not take the initiative to turn off the TV. It wasn’t that I had nothing else I needed to accomplish. I was tired and I lacked the physical energy to pull myself up from the sofa and into another room.

My experiment is not completely successful and at times I remain frozen and dazed on the couch, unable – or unwilling – to take action. For the most part, I can manage to get away from the TV and do something. Doing anything is a victory. I’ve increased my available time in the evening by about 50%. While that’s not a remarkable success story, it’s progress. And I’ve regained some of the time that the networks have taken from me.

inertia

What We Carry

No one can know what each of us carries with us. We have invisible illnesses, invisible family problems, invisible mental health issues.

Certainly these issues are not completely invisible to others.  Anyone who is attentive can see the (physical or mental) pain break through to the surface at times. Yet most of us cannot experience the pain of others. We can only empathize – and that is sufficient for most of us.

We join together with people who carry similar things. Groups for Rheumatoid Disease, groups for Sjogren’s, groups for loss of a family member. But no two diseases, no two disasters, no two burdens are exactly the same in each of us. To the person who says to me “I know exactly how you feel.”,  I say “No, you don’t”. (Okay, so far that has only been in my head, not expressed aloud.) Because I am aware that others are also carrying things with them and some may be greater than mine. I can only sigh and remind myself not to judge.

Everyone we encounter has something to teach us. Sometimes it’s tolerance. Can you hold an objective or permissive attitude towards others whose opinions and practices are different from yours? Or do you feel threatened by ideas you may not understand?

Others can teach us how to serve.  I recently attended a veteran’s panel discussion and learned how dedicated the members of the panel are to helping other vets.  Several of the vets have been homeless themselves, and without a second thought they offer their homes to vets who are currently homeless and in need.  Their connection to others in similar (but not identical) circumstances is inspirational.

And then there’s the most illusive lesson of all – patience.  I’ve long been aware that humans move through this world at their own pace. I’m not referring to personal development. That’s another story for another post.  I’m referring to a physical pace. How fast we walk, move down a flight of stairs, or run to catch a bus.  Over the last few years, I’ve slowed down my pace. Not by choice.

It’s not an age thing, it’s an autoimmune disease thing.  My body doesn’t respond as quickly to my brain’s signals as it once did. In some cases, it takes additional effort to move my limbs at all. And it hurts when I do. Frequently I feel like I’m moving through wet cement to accomplish my daily tasks.  And this makes me the annoying person that people want to push past on the street or on a flight of stairs.  I live in the Northeast and everyone is in a hurry.

There are many people carrying much larger burdens than I do. Some of those burdens are temporary. Others are from childhood on. All can be heavy at times, lighter at other times. We can’t always see the pain that people are feeling.

I am a person with Rheumatoid Disease and Sjogren’s Syndrome. And I stand up proudly (yes, but slowly) to state that I am a person of value. Please don’t just brush past me without a second thought. Your first thought being “Why doesn’t she hurry up?”   After all, I was once like you, moving through the world at a breakneck speed.

And I also have many things I need to accomplish. The most important? As I slowly move up the steps of a bus before you, I am here to teach you patience.

The Universal Language of Chocolate

image

Except for a few lost souls, we all enjoy the comfort of chocolate.

I live on the Northeast. As the fall transitions into winter, nothing (not even coffee!) warms me like a mug of sultry hot chocolate.  Unadorned or topped with mini marshmallows, the drink calls to me when I’m watching TV late at night.

And nothing is better for an afternoon boost of  moral than a bit of dark chocolate. A good bar of Ghiradelli can be better than a coffee break to get me through the rest of my work day.

Of course, we’ve all read about the benefits of dark chocolate.  I devour every article I find praising the health related benefits of dark chocolate.  I need nothing more to affirm that I can measure off a square as I would a dose of medication, knowing that it will be good for my heart.

Care to join me?

Day 4. Take Back the Evening

packersMy project to be intentional about watching TV is a journey of small steps. Some of those steps go backwards and some are side steps.

Most of my evenings I have purposely turned off the TV while waiting for the next show I plan to watch. At least once during the last four days, I mindlessly sat through what I call an in-between show. I also call it a waste of my time. Life is too short. I have much I want to accomplish.

So I will continue this self-imposed challenge to take charge of my evenings. The week days belong to my job and Saturday and Sunday daytime are filled with activities and errands.  I will not surrender my evenings to whatever the networks declare to be entertainment.  I will be the judge and jury of my night time digital viewing.

But for today, it’s Sunday afternoon and the Philadelphia Eagles play the Green Bay Packers. And the game is on my schedule.

The Land of Inappropriate Comments

mapThis new and strange land must be where I now reside.  The reasons the inhabitants of this land would share intimate information with me are completely unclear.

If we have a business appointment and you arrive late,  a simply apology is appreciated. It is not necessary to inform me that you’re late because your boyfriend/partner was having a vasectomy and it took longer than anticipated.  I don’t know you. And now I never want to meet your boyfriend. If you introduce me to him six months from now, he’ll still be Vasectomy Man in my mind.

When I ask you how you’re doing, if things are not going well for you today or if you’re mourning the recent loss of a family member, it is appropriate to tell me what’s on your mind. I’m not heartless.

But if I’m standing in line at the bank, and you (a complete stranger) suddenly begin to talk with me about your daughter’s drug problem, I become puzzled.  Did I say anything to lead into this conversation? I decide I did not.  Is there a sign that says “Say no to drugs” in the bank lobby?  I don’t see one. I decide that you are so overwhelmed the words had to come out and I’m the random person that is standing in front of you.

But then it happens again. And again.

It might be my introverted self thinking this but people seem to be sharing personal details that used to be…. well, personal.  And I remain puzzled.

If this happens to you, I’d like to hear about your experiences – and how you handle those inappropriate comments. Or is it just me?

P.S. Day Two of my Take Back the Evening project produced mixed results.  I watched a recorded episode of The Blacklist so I saved time by speeding through the commercials.  My next planned viewing was Modern Family at 9 PM – and then I discovered the show was replaced with the Country Music Awards. I found myself running through the online guide and watching a few minutes of several shows before I ruled them out.  Hoping I didn’t help their ratings by lingering for a few minutes.