Tuesday, June 29, 2010


There's a big part of me that thrives on challenges.  Which is fortunate because I have quite a few in my life right now. 

Professionally as I mentioned we are in a transition phase.  My biggest challenge is to bring my staff up to speed and guide them through yet another set of big changes.  In the last three years- they have been through a lot of them and at during each one, there has been some balking.  The problem is that now it's time to really evaluate where everyone is and then take a hard look at where we need to be.  Fortunately, I have the support of my regional, my client and my assistant.

Personally- well, let's just say that some of my challenges have not changed- I just have not risen to them.  I really have to get serious about the weight thing.  It is beyond time.  I need to set a date and a loss as a focal point and really keep my eyes on the prize.  Now- I could do one of the quick fixes- but really- in the long run- it just won't help so I have to remember that it didn't go on overnight- it won't come off overnight and not get discouraged along the way.  In this journey, I have the support of my family and some really great friends.

The next challenge is my RA treatment.  I am currently on prednisone, tramadol and flexeril on a daily basis and have completed my loading doses of Orencia.  Now I am up to a monthly dose of the infusion.  Though I am fully aware that it could take many months to see the effects but at this point- I am not seeing it.  I am tired, achy and my joints are making themselves known. The topper is that wheneever I have the infusion- I lose a whole day to being sick as a dog.  I am feeling like since I stopped the MTX we have taken a HUGE step backward.  My challenge is to stay positive for at least three more months before we have to decide if I will stay on this treatment or switch yet again.  I have been through most of hte DMARDS- I don't know how much is left to even try.  Had my stupid liver not reacted- I would very happily still been on my MTX and doing just fine.  I am a little bitter about this- that too is a challenge.  For the treatment portion- I know that I can talk to many of my "RA Friends" that I have connected with and they will understand.  The bitterness; well- I don't want to be that way- so I need to find it within me to find a positive here.  I don't want to be that person that you see on the various chronic pain message boards who is so consumed by their illness that they never talk about anything else.  I need to find a way to put the pain in the compartment in which it belongs and the medication issues in their own compartment and give myself a break over the fact that my body decided to rebel. 

So those are just a few of my challenges.  Putting them on paper helps to focus my mind.  Hopefully from here I can create a game plan and start working toward a solution on all fronts. 

Monday, June 28, 2010

It's time to catch up

I had a wonderful meeting last week- but that wonderful meeting was focused on big changes coming down the pike.  Our VP addressed management and leadership styles and the biggest message that I got from her was "If you are resistant to change- you will struggle" plain and simple.  Big changes are definitely coming down the pike in the world of college bookstores, I am only thankful that my company gives us the tools that we need to prepare for those changes.

The bad part about leaving for days is that we get behind.  I walked in to 6 pallets of books in my back room- and a short staff on Friday.  That meant that though they weren't expecting me to be there because we do long hours at the meetings and driving over 5 hours home just plain hurts- I had to stay for four hours and then I went back on Saturday for four hours as well.  It's going to be a long couple of weeks and if I don't catch up by the 16th- I will be cancelling my vacation so we can be ready for Fall.  Here's the hard part- one of our charges was to find more "white space" in our calendars.  Looking at that back room- it's going to be tough for the next few weeks and if MY back room looks like that- I cannot imagine what my fellow managers from smaller stores came home to.

It's time to put my nose to the grindstone- and if that means that I work longer hours to get it done, so be it.  The shining light at the end of my tunnel is that I get to spend this weekend with my baby sister- and that is something to keep gratitude in my heart during the hardest of times this week. 

Monday, June 21, 2010

Goodbye Weekend, Hello busy week..

Weekends are a bit like rainbows; they look good from a distance but disappear when you get up close to them. ~John Shirley

    Well that weekend just flew by!  We didn't do anything spectacular but it seemed to go so quickly.  Friday, my poor hubby got home and took a shower and didn't last long after that.  Friday was our 13th day in a row of 90+ degree weather with huge humidity.  That means that the weather has felt like it was over 105 every day.  He works in a mold and tool company- the warehouses average 130 degrees and it just plain wears him out.  So he fell asleep in the recliner and I took the pups for their walk.  He had to work again Saturday (he does more often than not) so I dealt with the mountain of laundry that needed to be folded.  After napping when he got home- we went out grocery shopping at several different stores in Louisville.  Saturday night we had banana splits that we made at home with Edy's Double Churn low fat ice cream and fresh bananas and strawberries for dinner and enjoyed Harry Potter and the Half Blood Prince for our movie.  Sunday was Father's Day.  I celebrated with my Dad last weekend because of his schedule this weekend so Jim and I just kind of fiddled around.  We went shopping looking for a portable A/C and were unsuccessful in that endeavor so we got a tower fan instead.  I took him out for teppenyaki for father's day and then we came home and just relaxed.  For dinner I made Brats on wonderful fresh rolls that we picked up at Fresh Market on Saturday accompanied by roasted potatoes and green bean casserole.  The next thing we knew- it was time to take the pups for their evening walk and get ready to go to bed. 

 It's Monday again and the beginning of a weird week for me.  I have a half day of work today and then my third infusion at 1.  We don't know what the infusion is doing for me yet (we are still in the loading phase) but I have found that it does a real number on my stomach for about 24 hours (starting about 4 hours after the infusion) so tomorrow will be recovery day.  Wednesday I head to Dayton, OH first thing in them morning for a two day meeting.  Instead of coming home after the meeting on Thursday I have to head to Ball State to pick up some of their fixtures to add some B&N touches to my store.  Thankfully- my darling father loaned me his truck to do this so I don't have to try and fit them in my new vehicle.    I think they *might* fit- but we just don't know and I don't want to scuff the interior or damage it trying to force cherry fixtures into the back of it.  Once we load the fixtures into the truck I can head back but that will mean that my 3 hour drive becomes a 5 hour drive when I leave Dayton.  Driving is not my strong suit these days.  This will most assuredly mean that on Friday I will be hurting big time in the hips and back.  Friday I will drop off the fixtures and - if I am feeling up to it- help put them together- but then it will be back home to let my joints and muscles recover.  I am incredibly grateful that I have the weekend to heal as much as I can.  The following Monday is the first week of our second Summer session classes so I may go in on Saturday to catch up on anything that I need to do before we get busy again. 

I begin my week this week grateful for my father who is so kind and generous.  I am grateful for my husband who not only supports me in my work and my illness but also is a good "daddy" to our two puppies and will take the majority of their care this week.  Having one is a big responsibility- two can get just plain hectic.  I am grateful for a job that keeps me challenged and that I really enjoy and for a boss who *though I wouldn't wish it on anyone* also lives with RA and understands the ramifications of the illness.  I am grateful for the opportunity to go and meet with my fellow store managers and share ideas and strategies.  We have a terrific region and they are fun people who are good at their jobs.  I learn something new every single time we get together.  I am also grateful that at the end of my crazy next two weeks I get to see my baby sister.  It has been a while since we have been able to be together and she is a big source of support in my life. 

I hope you all have a wonderful week.  I fully intend to!

Thursday, June 17, 2010

A winning hand

“Life is not a matter of holding good cards, but of playing a poor hand well.”
― Robert Louis Stevenson

How perfect is that for those of us living with a chronic illness who also want to live a positive life? We certainly don't choose to live with constant pain, with the fatigue, with enough medications to rival a small family, with frequent visits to the doctor's office, with medical bills that could fund a terrific vacation. They are just a part of the hand that we have been dealt. It's how we handle that hand that determines whether or not we "win". If you have ever watched the World Series of Poker; it is not necessarily the best cards that win the hand; it's the player that does the most with the cards he or she has been dealt. It's all in the approach that you take.

In keeping with the poker game analogy- if you have ever watched or played a game you know that you can plop ten people down at the same table and you will have ten entirely different "games" being played. People watching is one of my favorite things to do and watching a live poker game can be a lot of fun. From the quiet and serious player who never shows a hint of what is going on in their hand, to the loud and brash player who uses distraction to get inside the heads of the other players, to the person who is just having a good time and enjoying the company and the game no matter what and the guy who is so competitive that he gets visually aggravated and even angry when things don't go their way; personalities are all over the map. I feel like I have met all of these people (and more) while navigating the world of chronic illness.

Many of the people that I admire the most in this part of my life (Yes- YOU Miss Dazey, Wren, Riotkat ) are the ones who take the hand they are dealt and don't just throw down their cards and give up. They take a pretty crappy situation and they not only live with it- they make the best of it as well. Rheumatoid Arthritis and Fibromyalgia are not who they are, it does not consume their life, it is just one facet of a very full life. If you read their writings they live lives filled with love and joy, wonder and peace. You can find Miss Dazey here, Wren is here and you can follow @riotkat on Twitter. These ladies will inspire you- they inspire me on a regular basis. They take the hand that has been dealt them and no matter what the cards; they play to win. I learn so much from them and from the way they approach their lives. I hope you can too.

***The above quote came to me yesterday from Real Simple Magazine. I get a "Daily Thought" from them in my email around 8:30 each morning. As an aside- if I could only read one magazine for the rest of my life- that one would be it. Most magazines I bring home and then literally rip out all of the articles that I want to read, put them in a folder and take them with me to any place that I will have to wait around. With Real Simple- I not only keep the magazine intact- I keep the magazine period because the articles and tips are so good. If you like positive quotes- go to their website and sign up for the Daily Thought newsletter- it gives me a lift each morning. ***

Tuesday, June 15, 2010

Make your choice

“Both abundance and lack exist simultaneously in our lives, as parallel realities. It is always our conscious choice which secret garden we will tend… when we choose not to focus on what is missing from our lives but are grateful for the abundance that’s present — love, health, family, friends, work, the joys of nature and personal pursuits that bring us pleasure — the wasteland of illusion falls away and we experience Heaven on earth.” –Sarah Ban Breathnach

This quote is very important to my life. There are days when it should probably be tattooed on my forehead. The important thing for me is that second sentence- "it is our conscious choice which secret garden we will tend..." Everyone has those days; when you are tired, when you are sore, when you just wake up on the wrong side of the bed. I am by no means an exception. When I am feeling cranky it is very hard for me to bring myself around to that gratitude place. It is only when I stop and make the decision to find something-anything- to give thanks for that I can flip that switch and change my attitude. The nice thing is that you can do it at any time. You can even, if you have to (and I have), do it many times in a day. There are times when it takes me finding a lot of little things to be thankful for in order to stay in that place all day. It's not easy but it is possible.

This is a lesson that was hard learned for me and I still don't have it completely under my belt. It is very easy to take something small that doesn't go the way you wanted and let it just decimate your day. If you think about it-it's a snowball effect. You get out of bed and stub your toe and that puts you in a mood. Then you can't find the clothes you want to wear. This makes you later leaving than you should be- which puts you in traffic and makes you late for work. You get the point- and that's just the first couple of hours! So why can't we take that SAME snowball and turn it into an avalanche of blessings? The answer is that we can. At first you really may have to work at it but as you make it a regular thing it becomes easier.

I don't know about you but for me when I am having a bad day it seems that the "bad" keeps piling up automatically. If we recondition our thinking; we can make the switch so that our blessings do the same. So which choice will you make today? Will you make it a good day or will you let what happens, happen?

“Gratitude should not be just a reaction to getting what you want, but an all-the-time gratitude, the kind where you notice the little things and where you constantly look for the good, even in unpleasant situations. Start bringing gratitude to your experiences, instead of waiting for a positive experience in order to feel grateful.” — Marelisa Fábrega

Tuesday, June 8, 2010

The best medicine-for whatever ails you

“I am thankful for laughter, except when milk comes out of my nose.”
― Woody Allen

My darling son is, at the moment, suffering from a broken heart. He and his girlfriend of 5 years broke up the other night. They have broken up before- several times- but this time it is particularly ugly. That does not preclude them getting back together- only geography could do that- but for the moment it is not looking that way. As a Mom (with a capital M), there is nothing I can do except be here and listen. Advice would fall on mostly deaf ears.

We talked quite a bit yesterday. We talk almost daily but yesterday was several times. I think what helped most was when I was inadvertently funny. Now- I didn't try to tell him jokes. I didn't say "cheer up". I didn't even necessarily *try* to cheer him up, but those moments when I said something that he found ironic or amusing and he laughed; it most assuredly lightened his heart if just for a brief second. I am thankful for that.

Last Friday I went for my second Orencia infusion. There were 5 women and one man in the infusion room. We were on different medications, we had not met one another before, our only commonality was that we were all sitting in chairs with an IV in our arms and had wonderful nurses and assistants with us. The first time, there was a somewhat difficult patient- a screamer if you will. Older than I and apparently an old hat at this (so often that they have suggested a port), this gentleman evidently screams so loudly that it scares the "regular" patients. The mood was more tense in the room as a whole- and I was more nervous to boot. This time everyone was talking and laughing and the time seemed to go much more quickly. It was not an unpleasant experience the first time; the second time however was much more relaxed and jovial.

It has been said time and again that laughter is the best medicine and I am here to tell you that it is true. Through trauma, pain, grief, a broken heart or a broken body; laughter heals beginning with the soul. Have you had a good laugh lately?

Thursday, June 3, 2010

On Perspective

I started my morning as I always do.  After checking my email, I popped over to facebook where I saw a good part of my "recent news" littered by those I like to think of as "The Usual Suspects".    These are the people in my life who CONSTANTLY complain, for whom the sky is always falling, who-always, always, always expect the worst.  I never realized, until I was away from them geographically how really negative they really are.  It makes me wonder if when I was with them- I fell into the same trap. 

I suspect that I did- which makes me even more grateful that I do not live that life (anymore?).  One example is my day tomorrow.  It's going to be chock full of medical appointments.  At 9:30, they are redoing the left side of my mammogram and then also doing an ultrasound.  From there I go straight to PT.  After that I have about a half hour break and then head straight to my infusion for several hours.  Once that is all over I will be able to go home and nap for a bit and then head to see the Pawtucket Red Sox play the Louisville Bats.  It's going to be a long day, yes but the way I see it I am spending most of the day taking care of my health and then capping it with seeing the SOX!  YAY!  While I am not looking forward to most of it- I am not stressing it either. 

Now- if this were one of the people I refer to- there would be post after post about how they probably have breast cancer (the mammogram), the PT is going to hurt, and then hours of sitting there with an IV- oh my goodness!  And that infusion wears me out- oh man it's going to just suck sitting at a ball field all night.  Doesn't it make you tired just reading all of that negativity? 

If you are on my facebook, you know that most every morning I post a quote.  Something to get me in the right mindset for the day.  Today I posted this: 
"Being happy doesn't mean that everything is perfect. It means that you've decided to look beyond the imperfections.” Unknown
I fully believe that.  I believe that we need to count our blessings and be thankful for the good things in our lives.  When we concentrate on the bad things- we get more bad things and it just magnifies.  When we look at the great things in our lives- not only do we get more good things- but the bad things seem not so all consuming. 

When I was looking for a quote this morning, I happened across this blog: Perspective is Everything .  Though I don't have a nice way to share it with the Usual Suspects in a public way- I am considering sharing it with them one on one.  Maybe they should read about this man who is living from a posititive place while battling MS.  Maybe they should read one of the list of blogs from my friend with RA, Fibro and Lupus.  Most of the folks on my blog roll are also living their best life while fighting their own battles.  Maybe, just maybe if they did spend some time in "our world" they might gain a little perspective on the constant drama that they portray.