Thursday, March 28, 2013

A new wrinkle in the RA journey

Last Friday I returned from an almost week long trip to Florida.  Sunday was travel, Monday my friends and I spent at Universal Studios Islands of Adventure, Tuesday-Thursday were VERY full days of our annual meeting and trade show and Friday travel back home.

The trip to Universal was strictly to see The Wizarding World of Harry Potter.  As biblio-dorks, we love the books, and the movies were top notch.  We were SO very excited and really enjoyed ourselves.  The best part was, having no children with us, we were able to wander around and spend as much or as little time at the attractions as we wished.  We ended up walking all of Islands of Adventure two and a half times over a span of 7 hours.  Nothing too arduous and truly enjoyable.

The work part of the week was a *bit* more strenuous but nothing horrid.  Which is why it was a very big surprise when, Tuesday night my feet and ankles started to swell. Nothing was hurting but they ballooned to the point that shoes had to come off and stay off early.  I woke up Wednesday morning and all was well but by Wednesday night- they were back to huge and though they weren't achy- they were swollen to the point that I could feel the....stretching of the skin?  It was wildly uncomfortable.  I talked to my bosses and received a "dispensation" to wear flip flops on Thursday to the trade show which was good because the swelling was not gone by morning and shoes were NOT fitting on my feet.  Friday- same thing.  I ended up traveling home in them- which was fine because I prefer to travel that way anyway.  Saturday and Sunday- I only bothered to put anything on to run to the store and by Sunday evening the swelling was gone enough to put on shoes for work on Monday.

Now, I know that inflammation and swelling is just a part of living with RA- but this was new to me.  Generally speaking, when I am swollen it's because my joints are inflamed and hurt like mad.  This time, the only discomfort was from the severe amount of swelling involved.  Where the foot and the ankle meet looked like two little fat rolls and the pressure was just...weird.  It wasn't that it was painful like the joint pain.  It was just so uncomfortable that I kept looking down to see what in the world was going on down there in my body.

So my question to my RA friends out there is:  Have you ever experienced this?  I am assuming it was because of the travel and the walking but since I walk regularly I am not positive.  I took photos for my next visit with my Rheumy but it just puzzles me so I wanted to reach out to you.  Any thoughts?  Suggestions?

Monday, March 18, 2013

What is Your Legacy?

I am in Orlando, FL this week for a series of meetings and our Back to Campus show for work. Two friends and I came down a day (and a half) early to get our geek on and go to Universal Studios "Wizarding World of Harry Potter" before joining colleagues nationwide tomorrow for a week of learning, networking and seeing the latest trends in merchandise.

This morning, I woke up a little later than normal. I am sitting outside this morning, all by my onesies, next to a fountain at my hotel. I have a cup of coffee in my hand and am just enjoying listening to the birds chirp and the rustle of the fronds of the palm trees. I brought along my latest Entertainment Weekly Magazine to pass the time and was reading an article entitled "Honoring TV Legend Valerie Harper". In case you didn't know; Harper, who is best known as TV's "Rhoda" from first The Mary Tyler Moore Show and then a spin-off of her own, recently announced that she has terminal brain cancer. The article is a beautiful testament to Harper's living legacy both as a television star and as a person. It's best summed up in this quote from producer James L. Brooks who said "Val always just lived. She spills support. It was almost excessive. All she ever did was pour out love and support." I think it's beautiful that this article is running now, while Ms. Harper is still alive to read it rather than as an "In Memorium" after her death.

Reading the article, which has dozens of quotes like this from friends and colleagues, got me thinking. If I were terminally ill or (God Forbid) to die tomorrow, what would people say about me? What legacy am I leaving behind for the people I have met? What would the people I have worked with, been friends with, people I have loved, say about me? I know what I hope they would say- but have I truly embodied the spirit of what I wish to be?

Here's the other thing running through my mind: Aren't we all "terminal" in a way? None of us is getting out of this alive, so why don't we tell one another how they have touched our lives? Wouldn't it be lovely to know if you have had a positive effect on someone before you leave this world? Wouldn't it be constructive to find out that you have negatively impacted someone so that you could make amends or repair that relationship? Not many of us are "celebrities" in the true sense of the word so it certainly need not be a public thing- but don't we all have people who have had a starring role in our lives? Don't we all have people who have had an impact on us without them even knowing it? As I write this, I think about a teacher I had in high school (a hundred years ago) who, at the time, I felt really believed in me. Oh, she may not remember me (it truly was 30 years and hundreds of students ago) but I remember her and the way she made me feel like I was truly better than the work I was doing. She woke me up to the fact that I was smarter than I was letting on in an effort to "fit in" with my crowd and that I didn't have to hide it. She never knew that she reached me. At 15-16 I never would have thought to let her know.

Why don't we tell them? What's stopping us from reaching out to the people that have been (and still are) important to us and letting them know how much they have meant to our lives? There is nothing "wrong" with it, nothing to be embarrassed about. I think what I will do is do a "Google search" on this teacher and just send her a card thanking her for what she did for me. Perhaps I will take it a step further and reach out to others who are meaningful in my life and do the same.

This is a challenge- for you and for myself. Tell one person who impacted you how they have made a difference in your life. Let them know because they may not realize it at all and it could really brighten their day. You can send them a card, write them a letter, or shoot them an email if you are too self conscious to say it in person. Just let them know now, before it's too late.

Have a lovely day!

Wednesday, March 13, 2013

Family and Getting Back to Normal.

I had blocked off last weekend to head back to Tennessee for a round of plasma "donation" but at the last minute it didn't work out.  Instead, I packed up the puppies and headed to my folks.  It had been a month since I had seen them and though we talk often I have gotten very spoiled being able to pop down pretty much any time I want so I was missing them.

We didn't do anything "exciting" which was good.  I spent a lot of time on the sun porch reading, we watched a movie, went out to dinner, did a little work in the yard (they more than me), ran errands- just spent time together but by Saturday night I was starting to feel "normal" again.

Sunday morning, I had an epiphany.  I think that a very large part of the black cloud that has been hovering over my head is that I am overwhelmed in a big way.  I look at my house and I see so much housework to be done that I don't even know where to start.  I see "things" that I *could* get rid of, but it exhausts me just to think about making those decisions.  I think about work and know that I feel like I am constantly trying to play catch up.  I think about my personal goals and they seem so far out of reach.  I think about the fact that I am leaving Sunday for Florida and though Monday will be a personal day of fun with friends, I know that Tuesday through Friday will be work, work, more work and I feel like if I don't get my lists started now- I will forget something important that needs be done while I am there.

Spending the weekend with my parents with no pressure and no responsibilities did a lot to help me find the equilibrium that I need to get back on track.  I spent my drive home putting things into perspective.  I thought about what's important to me and what I need to prioritize when I get back from my trip.  I decided that those quiet hours were so restorative that I need to create a space in my house (and I know where it will be) that I can go to curl up and relax; with a book, with the puppies, with a movie- whatever- and I need to start using it on a regular basis.  I need to pull out my gratitude journal and start writing down something every day  for which I am grateful.  I need to get back to my "other" writing project which has been put aside for some time now.  I need to take advantage of the daylight savings time switch to get out and start walking again.

The plan is to spend the rest of this week preparing for next week's trip and then use the time away to creat a plan for my return.  I feel like I am heading in the right direction and that's a good feeling.  

Tuesday, March 5, 2013

In a dark place

I have been in a pretty dark place for over a month now.  I know that losing my father-in-law started the process but what I don't know is how to navigate my way out of it.  I have been thinking a lot about death.  Mine and everyone else's.  I am not to the point of obsessing (thank goodness) but I am...noticing it more and more.  It seems as if so many people that I know are losing loved ones and on top of it the news is filled with stories of untimely and sad deaths.  Some have definitely affected me more than others.  For example:

Late last week there was more than one severe accident on 65 in Kentucky at the same time.  One one side of the highway a big rig hit a car and started a multi-car accident. Within moments, on the other side (they are separated by a very large median) the exact same thing happened.  In the end, there were 11 victims of the accident, six dead.  One of the dead was a 94 year old man.  I could not wrap my head around living ninety four years only to die in such a horrific manner.  There were also several foster children among the victims.  These poor kids had already had a tough life- only to die this way.   "How does that happen?"  and "How is that fair?" played in my head all weekend.  Incidentally- there was a very similar accident in the same spot yesterday.  Three accidents in less than five days- makes me hesitate to drive that area any time soon.

Friday a 17 year old girl was raped and murdered in her apartment by a known, convicted sex offender.  He was caught within 24 hours but how does that happen?  The man has been convicted of rape multiple times going back to the 80's.  I cannot understand WHY he was out and walking around in society.  I cannot imagine what this CHILD (and whether or not she was living on her own, she's still a child) went through.  It hurts my heart to even think about  what she suffered and it makes me so very angry to know that this man was free.

Last week there was an accident between a cab and a car, I believe in NY.  The man and woman in the car were killed.  It so happened that the woman was very pregnant and so the doctors delivered the baby with great hopes that she would survive.  Yesterday, she too passed away from extensive brain trauma from the accident.  When I initially heard about this accident I was so hopeful for this little baby.  When the news alerted that she had gone it was as if all of that hope was sucked right out like a balloon that had been blown up and slips out of your fingers before you tie it off.

Shootings, stabbings, overdoses, suicide, war; stories of these fill the news every day.  You cannot escape  it if you want to watch the news for current events.  What are we doing to ourselves?  What are we doing to one another?  What can we do to Just. Make. It . STOP?

And then there are the illnesses.  Every day we see and hear of friends, loved ones, members of our community who are battling horrible illnesses.  I don't mean the ones like mine which bring pain.  I mean illnesses that can be terminal.  Go to twitter.  Type in #CancerSucks and see how many hits you get.  I would be willing to bet at least weekly you see a meme on Facebook challenging you to repost if you support someone who is fighting for their lives.  I know I do.  WHY- with the millions and millions and millions of dollars raised for research and the many great minds working on these research projects- do we not yet have a cure?

This is where my head has been.  I hear about this and my mind fills with questions such as the ones above and then moves to "how will I die?"  I am not so much concerned with when but I think about the cause. Quietly and peacefully would be my preference- but with all that's wrong with this world, what are the odds of that?  I have been thinking about this far too often for someone who is trying to live from a positive place.  I know it will pass, I just don't know when.