Monday, December 31, 2012

End the Old Year as You Plan to Begin the New One

It's the end of another year.  It's gone by so very fast!  But on this last day of 2012 I want to end the year as I plan to spend my '13 by taking a moment to give thanks:

Thanks to my family and friends for being the best support system a woman could ever hope to have.

Thanks to my puppies.  They are the bright spot on even the worst days.

Thanks to my fellow RA bloggers.  You keep me going- and inspired- all year long.

Thanks to my higher power for all of the blessings, large and small, in my life.  I WILL do a better job of seeing them every day in 2013.

Thanks to you- the readers- for sticking with me on this journey.

I hope that each and every one of you has a safe and Happy New Year's Eve and a wonderful New Year.  I will be back tomorrow to talk about resolutions and change.

Monday, December 24, 2012

Happy Birthday Mama

Today is not only Christmas Eve, but my mama's birthday. In several ways, we are symmetrical. She was born in 1947, had me in 1967 and I had Josh in 1987. She graduated high school in 1965, I graduated in 1985. She married my Dad in 1966, I married Jim in 1986. Do you see a pattern here?

Beyond our 20 year cycles (which I broke by not having more children- she had my sisters in 1970 and 1971) there are other similarities. We both have/had two siblings. I am the oldest where she is the youngest. We also look a lot alike. We both have brown hair and brown eyes, though I tend towards a dark blonde-light brown (most recently darkened further with the aid of a salon) while hers is more a deep brown. We both have very few grays- I think I have 5 now and she is beginning to show a just a few more. We both are/were in the area of 5' tall. We have the same nose which tends to run in our family. I have it, my sister Heather has it, Josh has it and both of my nieces have it. We have the same body type. We have the same skin tone. We are more olive complected and take sun very well where my sisters got my dad's fair skin and tend toward burning.

We both have our share of health issues. You all are well aware of mine since it's been written about here a million times. Mama, on the other hand has had a rougher go of it I think. When we were children and Mama was in her twenties she had three unsuccessful pregnancies, two ending in miscarriage and one resulting in a stillborn son. While these were with no doubt devastating for her, Mama handled them with grace and dignity. While I remember the events happening, I also remember her quiet strength. Twenty years ago, at the age I am now, Mama had a series of heart attacks, resulting in a double bypass. We were terrified that we would lose her but thankfully she received wonderful care at Bethesda NAS and recovered far more quickly than I could have ever hoped for. None of this made sense as she always seemed to be in good health. Despite her full recovery the underlying question was WHY this happened and there was just no answer- yet. She began her regimen of daily medications and accepted that there would be some limits in her life. Six years ago, at fifty-nine, Mom had a stroke. While her stroke was considered somewhat mild by the medical community, it seemed enormous to all of us. When she woke in the hospital much of her memory was...not gone but "hiding". She could remember what year it was and what time of year, but couldn't pinpoint the date. She could remember that she had three daughters but when asked it was "Julie, Lisa(the youngest) and...the one with the cute kids." She couldn't remember how to tie her shoes or do other basic tasks and most of all, she would lose her words when speaking. Anyone who has ever experienced what I call the RA (or Fibro) fog knows how frustrating it is when you are in the middle of a thought and cannot get the words out. With the help of Occupational Therapy, Mama made a good recovery. The only "lasting" effects are that when she is tired, she still loses her words which frustrates the daylights out of her and makes conversations very interesting when I am tired too and lose mine. :-) The other lasting effect is that she is, as a byproduct of the frustration, a little less even tempered than she was before. We did find out- finally- that all of this; the miscarriages, the heart attacks and the stroke were tied together by clotting issues that had gone undetected as well as an extremely underactive thyroid. The blessing is that since we know, it can be treated with Coumadin and other medications.

Mama and I also are very different in some ways. She and Dad married during the Vietnam era and shortly after my birth, he went overseas with the Air Force. While he was gone Mom went to work to help support me but when he came back, Mom became a full-time Stay at Home Mom to me and in short order my two sisters. Mom supported Dad by taking care of us and the home and helped to proofread his papers and such while he worked full time in the Whirlpool factory and finished his degree. She then stood with him as he took a commission in the Air Force and became an officer. She held us together as we traveled from base to base making a home for us at each new location and making moving and resetting up a home look FAR easier than it really is. Mom was there while Dad worked all sorts of crazy shifts, traveled on TDY and for a year on an unaccompanied remote. While in hindsight I can see that it was not easy for her, she never let us see that. We saw that she was the rock, the pillar, the heart that kept us going and was the epitome of "never let them see you sweat." She taught us to cook (some better than others) to do laundry, to take care of our houses (I am the worst at this) and to take care of ourselves and whomever else came along but she did it in a way that was just natural. I can't speak for my sibs, but it was never "you need to learn this" it was "let me show you how to do this" and then "okay, it's your turn to do it solo" or "now your laundry is your responsibility". She made our house a place that was not only warm and inviting for us, but welcoming to our friends throughout every year and base. It was not until I was in high school and college and weddings were looming in the near future that Mom went back to outside employment and even then she didn't skip a beat.

I, on the other hand, was a working Mom for Josh's whole childhood and through today. I have worked either 2-3 jobs while we were in New England or, like now, a salaried job that brings very long hours at times. I can cook *almost* as well as Mom but I never enjoyed baking as much as she does. I can do our laundry- but prefer the folding and putting away to the washing and drying so Jim and I split that task. I loathe housework- and it shows. As I sit here at her table and look around the almost spotless kitchen I can close my eyes and see my table at home that is much more of a catch-all than a place to eat. I still don't know how in the world she managed us three very different girls and kept the home as well as she did. I must have missed that particular gene because cleaning the house knowing that it's just going to get messy again makes me want to bang my head against a wall. . I think I also missed the "Stay at Home" gene because while Mom was content (?) with taking care of us, making our home a home and fulfilling all of the "duties" (wives clubs, committees, volunteer activities etc) that was expected of an Officer's Wife in the late 70's and early 80's, I truly thought when Josh was growing up that I would go mad if I didn't work. Suffice it to say, despite the wonderful example that she set- I didn't follow in her footsteps.

What's the point of all of this? Well, Mom is 65 today. She is the kind of mother that is open and loving and makes you want to spend time with her. She is a terrific Grandma to Josh, Amanda, Lauren, Matt and Jon. She is a good friend to all and the kind of wife I wish I could be. She and Dad are still crazy about one another, even when they are making each other crazy- after 50 years of being together. And today, on her birthday, I need to publicly give thanks. It will be 20 years ago (this coming summer) that we almost lost her. I am eternally grateful for the "extra" 7118 (give or take a few) days that we have been blessed to have had her with us because I don't know what I would have done without her guidance and her love.

Happy Birthday Mama! I love you!

Tuesday, December 18, 2012

Negativity is Exhausting

It's been a rough couple of months, hasn't it?  From the barrage of negativity surrounding our election through the horrific tragedy at Sandy Hook Elementary School this past weekend it's been non-stop.  Emotionally, I am worn out.  I still can't fully articulate how I felt this weekend.  It was one thing on top of another.  First, "watching" through endless breaking news updates the events of the school shooting in Connecticut.  Then, to compound that we hear of the twenty-two children who, at the same time as the Sandy Hook massacre was going on, were stabbed by a knife-wielding mad man in central China.  Next, an Oklahoma boy was arrested after trying to bomb his school.  Finally, a northern Indiana man was arrested and 47 guns were seized at his home after threatening to set his cafeteria worker wife on fire at her school and "take out as many other people as he could before the police could stop him."  I just don't understand what is going on in our world.  How did we get here?

So, I am tired.  I am tired of the violence.  I am tired of hate-spewing people who hide behind their computers.  I am tired of people who never have a good thing to say.  I am beyond tired of the whole "FML" thing.  It makes me so very angry when I see it because it's usually used over something stupid like having to work on a weekend or heavy traffic or a cranky child.   I am tired of the "Happy Holidays!" vs "Merry Christmas" argument that is plastered all over the news and social media every single year.  I am tired of the way I see people acting in stores to one another and to the poor people who work retail this year and have to "cheerfully" put up with it.

Short of holing up in my room and not coming out until after the new year what is the solution?  Here are a few ideas:

Turn off the news- the media is all about reporting the bad news so turn them off.  Turn off your tv, your talk radio, your smartphone alerts and give yourself a news break.

Don't get drawn into the debates.  It's hard, I know but it can be done.  We all know it devolves all too quickly these days so avoiding it all together is the key.  Just don't even look at the comments.

If you don't want to take a social media break (and I don't-lol) hide or remove those people in your life who are the complainers.  

Spread kindness- I am sure that you are always nice, so be extra nice to everyone that you see is having a rough day.  That cashier who just got chewed out over something out of their control, that mom who has a child throwing a tantrum, that waiter/ess who is running around like mad will appreciate that kind word and smile more than you realize.

And with that, I leave you with my favorite "words of wisdom" for the holiday season:

Tuesday, December 4, 2012

Surrendering to the Pain.

     It's one of those "you play, you pay" kind of days.  I spent a solid 30 hours over the weekend baking "jar bread" and making bourbon balls and two kinds of fudge.  Yesterday I **tried** to put together a utility cart at work.  The cart wasn't having it.  It's made of a very thick resin and the screw holes on the top and bottom pieces were smaller than the screws and the matching holes on the braces.  I managed to get about 12 of the 30 screws in place just enough to hold it together (but not enough that I felt secure) before my hands were swollen enough that my rings had to come off. Thankfully, the husband of a member of my staff came to our rescue and brought in a cordless drill and finished it off for us.

      This morning both hands (I am moderately ambidextrous so when one side would get tired I would switch), both shoulders, both wrists and my feet are screaming.  The shoulders and wrists have that deep pain that you would swear was radiating out from the bone.  The hands and feet literally feel like they are burning if I use or move them.  I am sure you are thinking "then why are you using them to type?" but we all know that life can't stop just because our bodies are protesting.

      Now- I know how this cycle goes but the sheer amount of pain still caught me by surprise. I have been stable for quite some time.  A couple of hours of stiffness in the morning, moderate Fibro pain throughout the day, chronic fatigue and deep back pain by the end of the day.  This "normal" is nothing I can't live with.  I think that having settled into this pattern and accepting the pain levels caused me to let my guard down and so when Miss Harley woke me this morning and I couldn't even attempt to put her up on the bed I had a "WHOA! What is THIS?" moment.  Next came "Well, I know what I did to bring this on- totally my own fault." and finally " I hope I can get loose enough to get all of the things I have to do today!".  

     It wasn't until a few hours later that I realized what didn't happen in that little mental exchange this morning.  I didn't feel any pity for myself.  I didn't beat myself up for having over done it.  I didn't have any of the "I can't" moments.  I didn't even have a thought of limiting my day.  Instead my brain made the jump to "here's what I have to accomplish today- how can I do it without aggravating the pain?"  That realization gave me such a sense of peace that I could only smile.

     I have found a quote that  sums up what I am feeling this morning.

"The word "surrender" is often interpreted as giving up, as weakness, as admitting defeat. Although this is one way to use the word, we will use it in a different way. Surrendering means letting go of your resistance to the total openness of who you are. It means giving up the tension of the little vortex you believe yourself to be and realizing the deep power of the ocean you truly are. It means to open with no boundaries, emotional or physical, so you ease wide beyond any limiting sense of self you might have."

- David Deida

 I have surrendered to this pain.  I have surrendered to my new normal and to this current self induced flare.  It's not going to beat me- I will prevail.  I will go on with my life and though I may slow down- it will not cause me to come to a stop.  RA won't beat me.  Chronic fatigue won't beat me.  Fibro won't beat me.  My possibilities are limitless.  

Tuesday, November 20, 2012

"Age Doesn't Matter Unless You're a Cheese"

I am not sure who initially said that, but boy is it true. As you may know, I am at my parents home for the holiday. Every Thanksgiving I come down for the week and we really enjoy our time together. It is a real gift after 20 years of living so far away from them and not having the funds to travel.

That said, when I am here I find that I am no longer a 45 year old, married, mom who runs a business. I am just "their kid". This is not necessarily a bad thing. I have great parents and I love being one of their children. The problems lies in that it is too easy to put everything else aside and just wallow in the "kid" role. I forget about things that I want to do, I don't think about things I "need" to do and I just go with it. It doesn't show up as much on weekend trips. The turnaround is too quick and I never really get out of my "normal" mode. It's the weeklong trips where I tend to think "there's plenty of time- I will get to it later." and just put everything else aside to just visit and get done things that they need to attend to while we can.

I thought about it this morning. I woke up at 3:45 (don't ask!) and made the coffee. I started looking through our list of things to do and crossing off what we completed yesterday and adding things we thought of while we were out and about yesterday and sent a "good morning" text to my hubby who is at home and was up and getting ready to go to work. When the coffee was done, I poured a cup for me, filled the thermos and got another pot ready. I rarely do that at home until I have finished the pot and am ready to run out the door to work. I then watched a few of the Food Network shows Mom has dvr'd while I fiddled around on Facebook on my iPad. It wasn't until about 7am that I realized that it's been since Saturday that I checked my work email. Normally I do that every single morning while my coffee brews. It gets that chore out from under my belt before I get there and anything can happen that changes my day. Now- my assistant and I are both out this week. I can almost guarantee that no one has walked into my office except to drop things off for me to see when I get back since last Friday. As I get a ton of emails each day- that chore will take quite a bit of time this morning. I will dive in as soon as I finish this post.

Mom woke up a few minutes ago and found me sitting at the kitchen table so that I can use my keyboard with my iPad with the news on the little kitchen television. After a quick "good morning" she fussed at me about having the volume too low to hear. I laughed and said "Mom, I am less than 8 feet away from the tv- I can hear it and am trying to not wake up the world!" but I found myself doing the defensive/whiny thing that I did when I was a kid. I stopped and laughed again and just shook my head at what was coming out of my mouth. It just reinforced that I am in "kid mode".

So my question this morning is this...Do you do this too? Or am I just a little crazy? Could go both ways! Now it is the time to get that email checked so I can plug my iPad in and get going for the day. Two more days till Thanksgiving and there's a lot to do! Have a terrific day!

Thursday, November 15, 2012

It's Vacation Eve-aka Longest Day EVER

For the last ten years each Thanksgiving week I have taken the week off.  The first five was to work more at my second job and the last five to spend the week with my parents.  I look forward to this week SO much because it's the one week when I can forget work completely and just relax. I think my other half enjoys it too because he gets at least 5 days of nothing more to worry about than going to work and feeding himself.

 This year because I had not taken much time off I am actually taking TWO whole weeks! I don't have to be back to work until December 3rd! I am heading down to Mom and Dad's with the Barkingtons on Saturday and I may just spend both weeks down there.  I am not going to "schedule" anything.  Instead I will see how long it takes for me to feel like I need to be home and get some "stuff" that I have neglected done.

I know the pups will enjoy themselves.  They love, love, love being able to run free in Grandma and Papa's yard.  Unlike here, where they have to be on a "runner" or leash when they are outside, at Grandma and Papa's house they can chase squirrels and bunnies, explore the jungle of my mom's iris garden, play ball and flop down in the sun with only a fence to limit them.  Whenever I pack a bag they start watching closely to see what's going on.  When I pick up their bag- all hell breaks loose.  They know they are going somewhere.  Jumping and barking, following me around until I am ready and as soon as I say "Grandma"- they stand quivering with excitement by their leashes until they are clipped in and then dash to the door.  Due to their excitement I have to be very sneaky packing for all of us.  I actually started gathering clothes and stuff days ago but haven't pulled out my bag yet.  Tonight I will get some together and tomorrow the rest of my stuff will be packed so Hubby can help with packing my car before he goes to work on Saturday morning.  Packing for them will happen after they are at the groomer's on Saturday and then I will pick them up and leave directly from there to hit the road.

Before ANY of this can happen, I have to get through work today.  I know how this goes.  I have one several hour project and a whole bunch of little details to see to before I can go but even with all of those things to do the day will drag.  The closer we get to 4pm, the longer the hours will seem until I am wired for sound and bouncing off of the walls.  My poor staff will probably be as ready to see me walk out of the door as I will to go but what can you do? I think what I will try is this; every time I feel myself getting keyed up I will remind myself how grateful I am to have the opportunity to take a nice, long vacation and as I am giving myself that reminder I will also remind myself to breathe.  I am hoping it will keep me from making myself and everyone else crazy in the process.

Here's hoping it works because it's time to head in and get this day started!  

Wednesday, November 7, 2012

It's not the Christmas season just yet!

How's this for a conundrum?  I work in retail, in fact, I manage a retail establishment.  That said- "greater retail" makes me CRAZY!  I am not a "shopper" unless you want to drop me in the middle of Whole Foods/ Trader Joe's/Fresh Market or a book store (natch!) and then I can make a day of it.  I only buy clothes when I absolutely must.  I only buy household items when I can justify it.  I have a little craft "thing" that has been tamped down because I am out of designated room until I finish some projects.  I pop in and out of Target or Kohl's, Penny's (they have SEPHORA now!) or Macy's as fast as I can pick up what I need and get out.  I avoid Walmart like the plague and only go when it's the only place I can get whatever it is that I am looking for.

Here is what is currently making me nuts.  Halloween was a mere week ago.  I prepped for Halloween for weeks before that- favorite holiday and all.  In September, just after Labor Day, I went out to start looking for in expensive candy to do one of those "how much candy is in the jar" things in my store for Halloween.  I walked into the Dollar Tree and there, right next to the Halloween stuff, to my horror the drive aisles were set up for CHRISTMAS already!  Did I say horrified?  I was appalled!

That was just the beginning.  Halloween was last Wednesday.  The weekend before I had to do the Walmart thing and they too were pulling down Halloween and setting up Christmas.  Two weeks ago Target (oh- how can you betray me?) started running their first Christmas ads on television!  This is madness!  

Maybe I am old fashioned.  Maybe it's many, many years of working in both the hospitality and retail industries where we spend every waking hour heading into the holiday season inundated with Christmas music.  Maybe I have become a Grinch but I just feel that it's too much too soon.  I am of the camp that believes that the Christmas "stuff" doesn't start until after Thanksgiving.  And don't even get me started on Black Friday and the ads that are already popping up for that.

I am mildly agitated about this because last Thursday my assistant manager ( love her dearly) who is our general merchandise buyer was ready to dismantle everything Halloween and set up Christmas.  I balked.  Actually, I flat out said NO.  No tree, no music, no display.  Everyone know's that the season is coming.  The date doesn't change.  If people want to come shopping, great! We have the product and are prepared.  I just don't feel that we need to completely roll over Thanksgiving and wrap it up in one big ball and make it into 8 (or more) weeks of holiday madness.   Instead, we will be easing into the holiday.  I have 10 boxes of "Christmas" (both themed and gift worthy) books that have been in my back room for about 2 weeks.  This weekend we will start putting them out.  The week of Thanksgiving (when I am on vacation) they can go nuts and set up the tree and the decorations.  The Monday after Thanksgiving, the music can go on.

 Until then, I would rather we all concentrate on all of the wonderful things that we have to be thankful for this year.  It won't hurt anyone to take a deep breath and give thanks, if only for that deep breath.  It won't hurt anyone if we wait a few more weeks before we dive into Christmas.  

Tuesday, November 6, 2012

Just an idea for today

Yay!  It's election day- I can finally end my self-imposed mini-exile and come back to the wider parts of the web! O_o     I promise folks, this is a short and simple post.

This has been such a very, very ugly campaign season.  I know I have made my disappointment very evident here so I am not going to bore you with it again but I have had an idea.  I think it would be lovely to end all of the contention a better note.  Please, please get out and vote.  After you vote, how about we all do a random act of kindness?  I am going to buy coffee for the guy or girl behind me in line today.  It's as easy as that.  Just do something small to make someone's day a little better.  Let's band together and start a wave of good feeling out there.  Thanks!  

Tuesday, October 23, 2012

Time To Kick Out Of This Rut

     Between work and flares and still dwelling on this whole state of the way people treat one another (see the previous post if needed) I have been in a bit of a funk.  Thursday and Friday I will be traveling for work so I need to pull myself out of it before I am thrust into a room with 50 or so other people for two days.  I don't want to be that cranky wench in the corner of the room.  I like these folks and I want to enjoy as much of those two days as I can.  So- I need to focus on good things.  Put the rest out of my mind for a bit.

How about a list of things that make me smile?  Maybe we have some things in common!  Here we go, in no particular order:

1- My puppies.  They really do light up my whole world.

2- My other half.  We have been together so long I cannot imagine being without him. He makes me smile- most of the time ;-)

3- My 'man-child"-  He really is a good guy.  I am very fortunate that he turned out so well.

4- My family.  I have terrific sisters and parents.  Again- I know how fortunate that I am to have them.
Now that we have hit the "Usual Suspects" we can get to the more general things:
5-  Curling up with a good book.  I love to lose myself in a story.  I admire anyone who can write so well that, if only for a moment to two, they pull me into another world.

6-  Pajamas.  Really, could there be any better way to get comfy?  Especially when you are not feeling yourself.

7-  A long walk on a cool day.  Not cold- but between 55 and 75 is pretty perfect.  That usually means Spring- when everything starts new again or Fall- when the leaves are changing and falling and the earth is getting ready to go to sleep for a few months.

8-  Looking for four leafed clovers.  Have you ever spent time searching for that elusive shamrock?  It can be pretty soothing.  We have a LOT of clover around here.  Sometimes I just sit down next to a patch and run my hands over each little plant.  It's not easy to find one- I have only found one in the last four years- but it does relax me to just sit there and concentrate on the plants.

9-  Having a fabulous meal.  I love trying new foods.  It can be something that my husband or I cook at home or something created by a professional chef in a restaurant but when you can sit down and enjoy something that wakes up your senses or just melts in your mouth- it can be such a terrific sensation.  I don't know about you, but it gets my serotonin and oxytocin going and I feel terrific!

10- In the same vein- CHOCOLATE. Need I say more?  Belgian Ice Chocolate, Godiva Milk Chocolate, Lindt truffles, even Hershey's drops.  Milk chocolate is just it for me.  

11- Cooking.  I really enjoy cooking.  It's a creative outlet.  I am a little stifled because Hubby is not overly adventurous but when I am alone or with my son (who is always willing to experiment) I can go to town.

12-  Traveling.  I am so lucky that Hubby and I are really good together on road trips.  I know people who can't drive across town together without fighting.  We are pretty much the opposite of that.  We get in the car and head out and everything melts away.  Even if it's just exploring our area, we really enjoy traveling together.

13- Searching for inspiration.  I have favorite websites, books, magazines and such that I rely on to inspire me.  It could be to do crafts, to examine my spirituality, to find recipes, to find DIY projects, to find a quote that starts my day in a positive way- anything that makes me think or want to try something new.  The hunt is as much fun as the treasure is satisfying.

That's thirteen- it's a good start and I am smiling.  Now I am off to hit one of the aforementioned websites to find my quote of the day.  Have a terrific Tuesday!

Tuesday, October 16, 2012

What is happening to us?

May I gripe for a moment?  Not really a rant; I am not angry, I am just sad.

     Let me first say- I love technology.  I love the internet.  I embraced it when it first became widely available.  I love that it lets me talk to, and get to know, people from all over the country and all over the world.  I started out in Usenet.  Are any of you old enough to remember that?  I then "graduated" to groups on MSN, Yahoo and AOL and on and on.  I met some of the best people I have ever known (Ames, Amy, Julie et al) through these groups and still keep in touch with them even after our groups became defunct.  I can never adequately explain how much the gift of their friendship, that would never have happened with out ye olde internet, means to me.  

     One of the things I have always enjoyed is a good discussion/ debate.  From discussions as tame as "What kind of laundry detergent do you use and why?" and "What book should I read next" to really heated debates on topics such as "Pro-Choice vs. Anti-Choice" and Gay Marriage most have been really interesting as you see what other people think and where they come from.  Unfortunately, as the internet has evolved, debates and discussion have devolved.  

     Back in the day, trolls were fairly obvious.  You could "play" with them or ignore them but they were fairly harmless.   The biggest problem is that the trolls had the anonymity of their screen name to hide behind and it made them bold.  With that anonymity came the "ability" to be rude, to poke at topics to stir things up, to be obnoxious.  Every once in a while admins would have to play "Whack a Troll" and boot them out if they got really bad but for the most part groups were a fairly safe place to talk and discuss.

     I don't know if it's the outgrowth of the original trolls or if the fact that the world is so comfortable with  the internet but the bile that I see online these days truly nauseates me.  This being an election year means there are literally thousands of examples of this.  Pick any post about the candidates or about the individual issues and read through the comments.  No matter which "side" you are on, almost every discussion begins with a back and forth exchange and within moments devolves into name calling, cursing, CAPS FRENZY as people "yell" their point.  It gets very, very nasty almost every time.  I have also seen a huge uptick in posts essentially shoving religious points of view down everyone's throat.  Maybe they were already there and I just didn't notice but it is not a sharing, caring kind of post.  It's not "God loves you".  It's more like "If you believe in XYZ you are not a Christian."  or "How dare you call yourself a Christian if you vote for so and so." or "If you don't believe ABC you are a heathen and going straight to hell"   It's rude, it's judgmental and quite frankly it's offensive.  I find that it's doing more to divide any and all faiths (and those who don't believe) than anything else.  Like the political posts, it starts to get nasty when someone replies "Just because YOUR church believes this, doesn't make it right" or "If you believe that fairy tale, you are an idiot" and just goes from there.  

     The straw that broke the camel's back for me and is making me consider if it's time to step away from social media for a while is the viral video by a young lady named Amanda Todd.  If you haven't seen it, it's incredibly sad.  This young lady made a video about the bullying she had been enduring for years.  She made some mistakes- and admits them in the video- and was mercilessly bullied for them.  Moving to a new town, more than once, didn't stop it.  Changing cell numbers didn't stop it.  Disabling her facebook page (and then creating a new one) so that those people were not on there didn't stop it.  She talks about the pain, she talks about how it lead to her cutting herself to release that pain, she talks about everything she did to disassociate herself from her bullies and how they essentially stalked her and made her life a living hell.  Posting her video was not only a cry for help but was also a strong statement about bullying.  Watching it made me angry.  Watching it made me want to fight for this little girl.  Knowing that a few weeks later this little girl was so despondant that she committed suicide is just heartbreaking.   But it doesn't end there.  This video touched a lot of people- and it also brought out the animals.  If you read the walls on the Facebook pages that were made in her memory, if you read comments under the articles, you will see that for every 5 or so "good" comments, there are so many vile comments that it will turn your stomach.  Even in death this child is still being bullied; but now it's gone global so how much worse is that?  Her parents can see this.  Her friends can see this.  I cannot imagine the extra heaping of pain this causes them. The other night I was reading a follow up article and the comments made me so sick that I literally turned off my computer.  That makes me sad.  I love social media.  I love Pinterest and Facebook, Linked In and Instagram.  I don't want to give them up but I don't know how much longer I can wade through this mud to find the true discussions.  

     What has happened to us?  When did this become "okay"?  Do these people not realize that, specifically on Facebook, their true names are out there for the world to see what kind of people they really are and that if they are posting anonymously they can be found out?  Do they think they are "protected" by the first amendment?  They are not.  There's an article on the Huffington Post today that the well known "Biggest Troll on Reddit" was outed by Gawker and subsequently lost his job because his company did not want to be associated with his online persona.  I have to say- I can completely understand his employers points.   Personally,  I have found this very enlightening.  I have discovered that people that I thought I knew were the kind of people who will condemn you in a minute if you do not believe what they believe.  I have discovered that some people are not who I thought they were.  This too makes me sad because I cannot look at them with the same respect that I had before all of this.  I am just sitting here shaking my head because I just don't understand how anyone can feel that this vitriol is acceptable.    That's it.  That's all I've got.  I would love to hear if you have noticed this as well, or if it's just me.  

Monday, October 15, 2012

Back to Reality

 Well, this vacation is over and I am a little sad.  My best friend is back in MA.  It was so nice to just sit and visit with someone who not only gets me, but is stepped out far enough to be able to be objective.  She understands me well enough to give me a big butt-kicking when I need it.  Even though we spent a LOT of time relaxing- I could still use a vacation from my vacation- isn't that typical?  

       Now it's back to work.  I need to get back and get some things done.  I already went through my email this morning and made myself a To-Do list for when I go in.  One thing that I am going to do that is not on my list though- is to decide when I am taking the rest of my time.  I always block off Thanksgiving week- but we only have to use 3 days for that as we are closed both Thursday and Friday and they count as holiday days.  Between that and the couple of days I am taking around Christmas, I still have a week left to take and I need to find the time and use it since it's Use or Lose.  Even though we did quite a few things,  I really enjoyed just being home.  More and more I find myself able to be home with nothing on my agenda more than to spend some time reading and napping.  In years past I would never have been able to just do nothing for more than a day.  I guess that I am finally able to step away from all of my responsibilities and from feeling like I always need to do something (ANYTHING!)and find peace in doing nothing.  So- I have added "Schedule vacation time" to my mental list for today.  It will be a reward for getting everything else on my list crossed off.

     When I get home tonight I need to sit down with my planner and start planning out some posts to get back into regular writing.  I also need to set some clear goals for the next three months and look at my budget because- as much as I hate this- it's already time to start planning for Christmas.  Josh is fairly easy this year.  He asked for a new coffee maker.  I know what I am getting for Jim as well.  He is pretty difficult but this year I have the idea.  I can't write it down because he is infamous for always guessing or finding out what he's getting and with my luck, this would be the one post he would read.  :-)  The older nieces and nephews are going to be easy this year too.  They are getting cash- but not just a check or bills in a card.  I am going to buy small bills and slip them inside balloons.  Then blow the balloons up and fill a box with them.  So they will each get a box of blown up balloons stuffed with cash.  I may stick a few notes in there inside balloons in as well.  They are terrific kids and I wish I could be nearer to them.  That leaves my parents, my younger nieces and nephews and friends.

     I also want to hand write some notes to friends this week.  Just before Karyn flew in last week, I lost a  friend.  He had a heart attack and went very quickly.  Fortunately- just a week or so prior we were chatting back and forth on Facebook and I told him that I loved him so he knew.  I want to take the time to send some notes to different friends and family members to make sure that I tell them that I love and am proud of them too.  It's so important.  Losing Donnie was a stark reminder that life is too short and we need to make sure that everyone we love knows how we feel about them.

   As much as I have enjoyed sitting here and just writing about what's in my brain today, it's time to get moving!  Thanks for joining me on this attempt to focus my thoughts and get out of vacation mode.  I hope you have a terrific day! 

Friday, October 12, 2012

The End of Vacation-or-One Bucket List Item Down- Many To Go!

Sadly, today is Friday and my vacation is coming to a close.  We managed to relax and yet get everything that we wanted done and more this week.  Of course we relaxed and visited a lot- that is a given during Karyn's annual week-long visit.

Last Saturday night we went to Culbertson's Haunted House- which was a good beginning to our trifecta of haunted houses this season. The walk-through and theme for this year gave me good ideas for my own costume since I was already of a mind to change it up this year.  Tuesday was the big zip-line day.  Mom and Dad joined us for the trip to the Mega Cavern and we had a wonderful lunch at Little Cheezers in Louisville after- but more on the Zip Line later.

Wednesday, we literally recovered from the adventure all day.  Neither Jim nor Karyn or I got out of our pajamas all day long.  We relaxed, we napped, we watched TV and movies and let our aching muscles settle back down.  I knew I would be sore.  I fully expected it.  I was pleasantly surprised that it was not worse.  If I learned nothing else, I learned that I seriously need to work on my triceps!  My shoulders (and triceps) ached from holding on to the bars and my back/hips were achy from where the  equipment sat both while we walked and zipped but I would say the pain factor was only a step or two up from "normal".

 Yesterday we spent the early afternoon shopping.  Karyn for clothes (she mis-packed a couple of things) and me for Halloween Costume gear.  Next we went downtown and walked around our town's Harvest Homecoming before it got too busy and as the crowds began to grow we left and went to Texas Roadhouse for an early dinner.  Later in the evening we went to The Baxter Avenue Morgue, which was FANTASTIC!  We got there early enough that it too was not overly crowded and we were able to interact with the cast and volunteers before, during and after the walk through.  Before we went in we were chatting with security and mentioned how far Karyn had come for this haunted house trip.  He shared with the cast inside who really personalized our experience.  After, some of the cast and crew came out and talked to us for quite some time about working there, their experiences both in the haunted house and with the paranormal (see FACT OR FAKED PARANORMAL FILES on SYFY for an investigation of Baxter Ave) and they invited us back for a Saturday night (when they are really amped up) and to the Halloween Parade tonight.

Today I am going to leave early to go and exercise my right to VOTE.  I love that we can do this early and once I am done I am fully intending to hide each and every political story on my Facebook wall from now until November.  I am going to stop across the street at the library while I am downtown as well and then back home to relax for a bit.  Tonight's plan was to go to Waverly Hills to the Scare-a-torium but they have been posting on their Facebook page that crowds have been so deep that people are lining up at 5pm to get in the gates- and the gates don't open until 7:30.  As we have done this particular haunted house before and I am not up to sitting in a car for hours and then standing in line for hours- we are opting out and instead considering going to the parade first and then heading to the haunted hayride at the Field of Screams in Brandenburg, KY.  That's it for tonight as we put Karyn on the plane back to MA tomorrow.  :-/

Now- back to the Bucket List item of Zip-lining.    I am super excited about this for several reasons:

  1. I was very worried about how I would physically manage the bridges, walking/climbing on the uneven ground inside the Mega Cavern and actual "Zips" between my Rheumatoid Arthritis, Fibromyalgia and general "out-of-shapeness".  
  2. I really, REALLY, do not like suspension bridges.  Besides mild vertigo, the fact that they move (or more specifically BOUNCE and SWAY) as you walk makes me feel more than a bit nauseated.  
  3. Partially because of the aforementioned vertigo and partially because of a lack of control when you fall, I didn't know how I would find the confidence to literally step off into nothingness- especially in the dark of the cavern.  

I DID IT!!!!  I not only managed to complete the 5 Zip-line course, but made it across the "Challenge Bridges" with very little problem.  That said, our guides were terrific.  They took the time to explain everything we were doing from beginning to end and answered all of our questions throughout.  They checked and re-checked our safety equipment.  Most importantly, they tailored their approach individually to each member of the group based on our experience and fear level.  They ribbed us when necessary and cheered us on when that was needed as well.   When we finished, I felt exhilarated!   Feeding off the boost that this "Mission Accomplished" gave me; I think it's time to start tackling other items on my list.  It also gave me more ideas to add to that big old list.  The question is, where to start???

Saturday, October 6, 2012

Crossing off a bucket list item-no matter WHAT my body says

I am officially on my yearly vacation.  Not that I only get one- but once a year my best friend flies out to Louisville and we spend a week together.  We have a fun week planned:

  • We will be visiting 3 different fundraising haunted houses for well known truly haunted locations (Waverly Hills Sanatorium, Baxter Ave Morgue, Culbertson Mansion)

  • We are going to the movies (Pitch Perfect- hubby has no interest)

  • We are going to eat good food ( I have been scouring Pinterest for days)

  • We will visit a LOT.  

  • But the biggest thing we have planned is...we are going ZIP LINING!  

I am so excited to go.  It's been on my bucket list for quite some time.  My only fear is how the old body will react.  Not so much to soaring down the zip line, but to the "Challenge bridges" that we have to climb to get to the zips.  I have been battling my hips for quite some time, and my shoulders are pretty sore too. The last few weeks have been a bit of a rollercoaster about this upcoming trip.  I was so excited to go, I still am, BUT, as I lay in bed each night and my hips and shoulders ache, the fear comes over me.  I start with the "What if I don't make it?" then "What if it brings on a major flare?"  and so on and so forth.  Then I got mad. Mad that I was letting the fear of my RA and Fibro put a damper on something that I REALLY want to do.  Finally, I became resolved.  I don't care what my body says.  I am doing this.  It may be once in a lifetime event for me and I am going to go and enjoy every single minute of it.  

Tuesday, September 25, 2012

Contemplating a quote and making changes

I have been thinking about this quote for days.  I shared it with a friend and she didn't agree with it but I truly feel that it says a lot about where I am in my life:

"Most people do not realize that as they continue to find things to complain about, they disallow their own physical well-being. Many do not realize that before they were complaining about an aching body or a chronic disease, they were complaining about many other things first. It does not matter if the object of your complaint is about someone you are angry with, behavior in others that you believe is wrong, or something wrong with your own physical body. Complaining is complaining, and it disallows improvement." 

- Esther Hicks, best-selling author and speaker.

  I don't know about you, but I have had (note the past tense) people in my life who did absolutely nothing but complain.  You know those people:

  • Their life sucks
  • Everything bad happens to them
  • They can never catch a break
  • It's too hot/cold/rainy/not enough rain
  • Every headache is a migraine
  • Every migraine (if they truly have them) is a tumor
  • Every cold is pneumonia
  • Every scrape needs stitches
  • They are too fat/skinny/tall/short
  • They aren't pretty enough
  • Their boss does not appreciate them
  • Their spouse does not appreciate them

I could go on forever with their list of what's wrong with their lives- because they do.  

To quote Andy Cohen (@BravoAndy)  "Here's What":  When you are around these people one of two things happens.  Either you fall into the pattern of spending all of your time with them comforting them and telling them how wrong they are OR you fall into the same pattern of complaining about your life too.  Neither of these two things helps your state of mind.  I know that for me, just being around them makes me feel completely drained.   Which is why I have made concerted efforts to remove them from my life.  

That said- I have been guilty a time or two of falling into this trap.  Not about my life in general because I am well aware that not only do I have a pretty terrific life but a great family and support system as well.  But when it comes to my RA and Fibromyalgia, I have recently found myself backsliding in a big way.  

A few weeks ago I had an appointment with my Rheumy.   At the previous appointment she had tested my RF because she didn't quite believe that they were as high as Seracare had reported and she normally only tests ESR.  I asked her about the results and  she said something to the effect of "despite the fact that you numbers are quite high (they were reported as >600) your disease progress is fairly stable and that's all we can ask.  In fact, I think we can go to 6 mos between appointments and you can always come in if you need me between."  At the time my hips were aching (still are) my constant back issues were flaring, and the fibro in my neck and shoulders was in an upswing.  All I could think, all I could concentrate on was that this is as good as it will ever be again which led to "I don't know if I can deal with this forever."  As the pain of the flare ramped up and then settled back to "normal", every negative thought that ran through my mind fed into another and it started to spread into other areas of my life.  Oh I tried (very hard) not to complain to my family and friends which just served to add another layer of "no one wants to listen to you bitch constantly" self talk on top of the rest.  I pulled away from writing, I spent my online time playing games instead of interacting with people and at home I closed myself off from everyone except my puppies unless I could deflect attention elsewhere.  It was a horrible circle that led me to the point that I just wanted to stay in bed all day and resented the fact that I couldn't.  Finally I woke up one morning and essentially told myself that enough was enough.  I couldn't keep doing that to myself because it was doing far more damage than the actual pain.  I went back and read that quote.  Then I read it again.  Then I read it out loud.  Then I moved on.  If this is my lot in life, okay.  It may not be the life I imagined but you know- I CAN focus on the good things and get through this.  I can accept the pain and fatigue and work with it.  I can still accomplish other things.  I just need to find out what I want to do next, starting with working on my book again and get going.  I can do this.    

Wednesday, September 19, 2012

Waging a battle

Hey Gang- I apologize for the lack of posts. I have been fighting a behind the scenes battle that is making me crazy! Over the past 5+ years that I have been writing this blog, there have been an average of 1-2 attempted spam comments a week. I have a filter set and they are *usually* caught before they clutter up the page where you all read and interact. I get an email for every comment that comes in and in those cases, I generally pop on in the evening and delete the spam with no one being any the wiser. Google/Blogger does a pretty good job of catching them with their filter. For that, I am grateful to Blogger/Google. The only *glitch* is that if I try to mark them spam from my mobile (both my iPhone and iPad) somehow they end up showing up on the page at least for a few minutes. What is really frustrating is that at times YOUR comments end up in the spam folder and in my rush to get rid of the actual spam, I have inadvertently deleted some of your comments too.

I hate spam. I HATE spam. I HATE SPAM! I hope that makes it clear to the spammers how I feel about their stupid posts.

I don't know what has happened of late, but for the past few weeks, the spam comments have kicked up a notch. I can almost time it. Just about the time I get to work in the morning, 20-30 spam comments hit my email inbox. Throughout the work day it slows down but several more come in. Those all have to sit and wait until I get home to take care of them- but the same thing that happens occasionally to my comment box happens to my email- I have inadvertently deleted important emails that have gotten caught between the barrage of emails notifying me of new comments and have been deleted. In the evening- usually after I go to bed, the same thing happens again. I get pinged for 20-30 new email for comments- all of them spam.

This whole thing is making me increasingly unproductive and more importantly, angry. Angry is not the emotion that I need to feel when I am working toward a positive and gratitude filled life.

I don't know what I can do about this. I don't want to turn off my emails for comment notifications because I don't want to miss your comments! I am to the point that I am considering moving my blog over to a new platform to try and get away from this. On the other hand, I feel loyal to Blogger because they have been very good to me over the years and they do try to ensure that the spam doesn't get through. Needless to say- the word of the day is "Frustration."

How about you, my fellow bloggers? Are you seeing a surge of spam as well? If you are on a different platform- which do you use and what do you like/dislike about it? If you are with Blogger- do you have any tips?

Thanks for baring with me while I work through this!


Monday, September 10, 2012

What can I learn from a hard lesson?

I am struggling a bit this morning.  Yesterday was a lovely day.  My hubby and I, both big fans of football in general and the New England Patriots specifically, drove down to Nashville to see the season opener of our Pats against the Tennessee Titans. I bought the tickets a few months ago and what was left after season ticket holders, corporate folks and what-not were nosebleed seats.  I thought it would be okay.   I did my homework.  Our seats were up high but there was an elevator.  Each floor has food, restrooms etc.  While the parking lot is reserved for season ticket holders only (really!) there was supposed to be public parking nearby.

Well- the information was correct- sort of.  Nearby parking is subjective.  We got there early and still ended up over a mile from the stadium and up and over the Shelby Street Pedestrian Bridge. When we got to the field, while there was indeed an elevator, there was also another estimated 50 very steep stairs to our seats.  I managed it make it up the first time, when we went in early to scout our seats, then back down to grab a bite (literally- the brat was YUKKY!), go to the restroom, get drinks and then back up again to the seats.  We sat there for the first half and then made our way back down to the third floor concourse.  Fortunately (for me) hubby was starting to feel sunburned and he wasn't crazy about the idea of me doing those stairs again because he could see that my knees and back were giving me trouble so we decided to make our way back across the bridge and find a little place to get some food and watch the rest of the game.  We actually stopped about a quarter of the way up the bridge because there was a perfect view of the jumbotron from there!  We made our way to Past Perfect and had a wonderful lunch (me-crab cakes, him meatloaf if you are ever in Nashville) and watched the rest of the game and then hopped in the car and headed back to Louisville.  After the three hour drive back home, it was hard even getting out of the car.  Everything was hurting.  The 3 hour drive back was just enough time for my muscles and joints to get to the point of protest. I stumbled into the house and gave some loving to the puppies.  Hubby hooked them up to their tie outs and I went outside with them and sat on the bench until they were ready to come back in.  I unhooked them before standing up-giving thanks that they are good babies and wouldn't run off when off their leads- and then stopped for my Flexeril and then took myself up to my bed.

So why am I struggling? I am completely bummed out about how ridiculously easy it was to cause myself so much pain.  I am bummed because I *thought* I was doing well- better than in a long time- and evidently I was wrong.  I am struggling because there has got to be some way to strengthen my muscles without making my joints rebel so that maybe next time I can go to an event and not look at those stairs and fear what will happen the next day.

I need a course of action.  I think the first thing to do is to allow myself to rest today.  Thankfully I had already decided to take the day off before all of this.  Next, I think it's time to go back to yoga class.  Beyond that- I am at a loss.  I think that means it's time for a nap.  Maybe when I wake up I will have more ideas.  We shall see.  

Tuesday, September 4, 2012

30 Things You May Not Know About My Invisible Illness

Next week (September 10-16) is Rest Ministries Invisible Illness Week.  A few years ago, Lisa from Rest Ministries put out the challenge to fill out the following meme.  I took her up on that challenge.  This year, she answered hers again (you can find it here) and then compared the two.  I decided to follow suit.  My 2012 answers are below:

1. The illness I live with is:

Rheumatoid Arthritis and Fibromyalgia
2. I was diagnosed with it in the year:
RA in Augusts, 2005, Fibro in 2008-ish
3. But I had symptoms since:
Early 2005 on all counts
4. The biggest adjustment I’ve had to make is:
Limiting myself in terms of how much I can do in a day.  Chronic fatigue is a very real part of living with both of these illnesses and it's an evil cycle.  The more tired you get, the more pronounced the pain.  Pain in turn saps your energy.  Ten years ago I was go-go-go constantly, now, not so much.  
5. Most people assume:
A LOT of different things but the two biggest are:  A- Rheumatoid Arthritis is just like its very common cousin Osteo-Arthritis.  I cannot tell you how many times I have heard "Oh! I have arthritis in my _____________!  It's not so bad.  You should just___________!"  and B- I have a significant amount of medication related weight gain.  Long term medications like Prednisone and biologics can do that.  People assume that I am "just" getting "fat".  If it were as easy as diet and exercise- years of Weight Watchers would have helped me lose.  
6. The hardest part about mornings are:
Gathering enough energy and flexibility to get ready and go to work.  Most days just drinking coffee and throwing on something comfortable and then making lunch is all I can manage.  Especially since I have to wait for the flexibility in my hands to prep my fruits and veggies and in my knees and hips to get back upstairs to my clothes and such.  
7. My favorite medical TV show is:
I don't watch medical shows but if I see an ad for an interesting episode of Dr. Oz, I will DVR it.  
8. A gadget I couldn’t live without is:
My iPad. It keeps me connected to the world no matter how I am feeling.  When I have the energy I can write and interact, when I am sick I can watch Netflix or a movie.  Lisa answered similarly and she is SO right.  
9. The hardest part about nights are:
Getting comfortable and staying comfortable so that I can sleep a full night.  
10. Each day I take __ pills & vitamins. (No comments, please)
2-3 Tramadol, 2 Neurontin, 3 Flexeril, 1 Lunesta, 2 Tums, and 2 Vitamin E and a multi- so; 13 different pills and vitamins.  Plus my Orencia injections every Sunday.  
11. Regarding alternative treatments I:
I would love to try accupuncture- and my doc is okay with it, but there are no practitioners in my area who are on my health plan.  
12. If I had to choose between an invisible illness or visible I would choose:
Invisible. I don't handle pity well.  
13. Regarding working and career:
I never thought I would see the day when I was ready to give up work- EVER, but now I can see that in my not so distant future and it no longer scares me.  
14. People would be surprised to know:
Again, parts of Lisa's answer were perfect so I will borrow on hers:  How much pain I am in and how many parts of my body do not work all that well.  Many people assume because I do what I do, I must not be in that much pain. I am blessed I am not worse, but after 7 years of RA, I have never experienced a day of remission and every day I want to go to bed and stay there, but I never do. My brain is wired to keep on keeping on. 
15. The hardest thing to accept about my new reality has been:
Any limitations.  I am not good at limiting myself in any way and have a tendency to overdo it by just pushing a little further . 
16. Something I never thought I could do with my illness that I did was:
Accept and work with my illness.  When I was first diagnosed I felt like I had been handed a death sentence.  
17. The commercials about my illness:
Make me crazy.  They are completely misleading.  Though medications can help to slow down the illness, everyone in the RA community knows that there is no cure.  Let me repeat that:  There. Is. NO. Cure.  No matter what Phil Mickelson says or what the commercials show some actor doing- you will likely never see me able to walk 18 holes of golf carrying a golf bag or running on a beach.  I am lucky if I am able to bend over and tie my shoes without it taking half of forever to do the task and then get back up.   Also- no matter how well a specific treatment works for one person- it won't work for many more.  I have been through ALL of the DMARDS and most of the biologics.  Methotrexate worked wonders until it started damaging my liver.  Then it was back on the search again to find something that would work again.  
18. Something I really miss doing since I was diagnosed is:
Walk around the Zoo, a museum or any other place where there are stairs or hills without the assistance of a cane.  
19. It was really hard to have to give up:
Pretty much everything that requires that second burst of energy.  Things like, working all day and then going out with my hubby or friends.  After working all day, I just want to curl up and rest.  
20. A new hobby I have taken up since my diagnosis is:
Seek and find games to keep my brain active.  
21. If I could have one day of feeling normal again I would:
I don't like this question.  One thing that I have learned is that we gain a new " normal" and accepting that is a big step in not allowing our illness to consume us.  
22. My illness has taught me:
Gratitude.  I can be grateful for all of the supportive people in my life and all of the things I am still able to do.  
23. Want to know a secret? One thing people say that gets under my skin is:
"You would feel better if you just exercised more."  and "OH- my grandmother had arthritis in her_____"  
24. But I love it when people:
Truly want to learn about RA and Fibro rather than making assumptions about it from what they see on TV.  
25. My favorite motto, scripture, quote that gets me through tough times is:
"Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend. "  Melody Beattie

26. When someone is diagnosed I’d like to tell them:
Do not listen to someone else's idea of where your illness will lead you.  If I listened to my first Rheumatologist I would be in a wheelchair right this moment.  You can make your own reality.  The important thing is to go through the stages of grief and then decide what you want out of your life and go for it.  Finally- DO NOT let everything you read online affect you.  You will find that some folks allow  their illness to be the only focus in their lives- that does not have to happen to you.  
27. Something that has surprised me about living with an illness is:
How much a positive attitude can affect your illness and how you live with it.  
28. The nicest thing someone did for me when I wasn’t feeling well was:
Built me a "nest" in my bedroom so I didn't have to leave if I didn't feel like it.  
29. I’m involved with Invisible Illness Week because:
It's so important that people understand that just because we look "okay" doesn't mean that we are.  Day to day, hour to hour how we feel can change and the more people that understand that, the more acceptance there will be.  
30. The fact that you read this list makes me feel:
Grateful that you care and would take the time to understand what changes my life has undergone.  

If you are not someone who lives with in Invisible Illness, I welcome any questions that this has raised.  If you ARE someone who lives with one of these illnesses, I encourage you to copy this meme and answer it on your own and then link us to it.  I would love to see your answers!  

Wednesday, August 29, 2012

Hurtling toward the end of the tunnel.

     The end is in sight for another Back To School cycle for me.  This one has been particularly rough.  There have been a lot of changes in my industry in the last few years and our big change this year means that I have been doing long-LONG-days (yesterday and Monday were 15 hours each at work for example) on my feet and I have been there 24 days in a row now without a break.  Needless to say I am exhausted, my everything hurts and I am ready for it to be over.  The big push will be tonight.  I am going in to work in about an hour(it's now 6:30am) and won't be done until after midnight.  Then all that's left is a 12 hour day and then I will be done and can relax for a nice long weekend with my puppies and my folks.  Mom and Dad know my schedule so they will be cool with it if all I feel like doing is resting.  I am so thankful for that since I know that many - far too many- with RA and Fibro have family members who just don't get it.

     I have to confess something.  I feel like I am getting too "old" for this and it is really weighing heavily on me.  I have been known to push through the pain and fatigue but this year it just seems to be getting harder and harder.   I love what I do (for the most part) and that usually keeps me going.  This year it is just not enough. As Wren would say (I am paraphrasing here)," the Rheuma Dragon is raising it's head and showing its teeth".  Unfortunately- Excalibur is stuck in the stone and I just can't get it out to fight this time.  That means the Dragon is munching on my feet, my ankles, knees, hips, back, hands and neck.  In some spots he's just nibbling, in others he's full on chomping down.  Even worse- the exhaustion is starting to affect everything.  Last night at work my words just wouldn't come.  I would start a sentence and not be able to get my words out.  That is a blatant sign that I am hitting a wall.

     It's such a vicious cycle, the more tired we are- the more we hurt.  The more we hurt, the more exhaustion creeps in.  Yes, if you don't deal with pain on a regular basis, pain saps everything out of you and leaves you exhausted.  Other than rest- I just don't know what I will do but I am going to have to re-evaluate after we get through the beginning of this term.

     On the bright side- I set a reminder in my iPhone with its own ringtone that jingles every time I leave campus and says "Something Positive".  It doesn't matter if I am just going down the street to grab a bite or going home, when I leave the campus proper the tone sounds.  When I hear it, I automatically start making a list of the good things that have happened on this day and I am able to relax a little on my way home.  It's a neat feature and has helped a LOT.

     It's time for me to get moving so I hope you all have a lovely day and a terrific Labor Day weekend!  

Tuesday, August 14, 2012

Sometimes it's just too much

"I know God will not give me anything I can't handle. I just wish that He didn't trust me so much."
- Mother Theresa

  • This time of year my calendar is packed.  I look at it each day to see where I am and I am overwhelmed.  

  • I am not- by ANY stretch of the imagination- a good housekeeper.  My poor mother probably wonders who raised me.  I look at all of the things that truly need to be done around here and I am overwhelmed.  

  • I have a million and five things that need to be done at work before school starts in just two weeks.  Just thinking about all of the little details makes me feel overwhelmed.  

The problem is not just that I am overwhelmed but the "side effects".  The brain doesn't stop which leads to little sleep which leads to exhaustion which leads to having to make choices as to what must be done (work stuff) and what gets pushed to the wayside (house stuff and snatches of sleep) which leads to more buildup in those put off areas which leads to being so overwhelmed that I don't even know where to recover. Phew!  

I kind of feel like I am a hamster in one of those Habitrail balls.  Rolling all over the place, but not getting anywhere and can't find a way out.  I have been thinking a lot about this because the end of my tunnel, the deadline to my madness is in October when my dearest friend comes back for her annual visit to The Ville.  

My big "failing", I feel, is at home.  What I could really use is two things:  I need a professional organizer to come in and force me to declutter and get things pared down at home and I need a housekeeper to do the "beyond the basics" stuff that I never seem to have the time/feel up to/ never feel like I get it right/ stuff that people that are good at that kind of thing seem to find so easy. It would take a real load off of my mind.  Unfortunately- that professional organizer and housekeeper will be me (with help from the hubby who is also exhausted and not a neatnik) over the next few weeks. The hard parts- finding the energy and motivation to get moving after very long days at work.  

   I really feel that if I could find the way to pare back, to simplify my life, to get into a livable routine; I could take that deep breath that I need to get through the rest.  I will take any and all suggestions. Goodness knows that I will take any help I can get. So here are my questions to you:  How do you find that extra energy and motivation to get done all that needs to be done?  How do you decide what to let go in order to simplify and minimize your "stuff"? 

Friday, August 10, 2012

He made me a good way

     My "baby" is a grown man these days.  I was not diagnosed with Rheumatoid Arthritis until he was 18.  We moved to the Midwest and he stayed behind less than two years later.  One of the few good things about this  is that he didn't have to grow up with a mom who was struggling to find out how to live with these illnesses.  Instead, he grew up with a mom that burned the candle at both ends, worked her butt off and did everything I could to give him a good life.  The flip side of this is that, having not seen too much of this journey first hand, sometimes I feel like he just doesn't get it.  I am woman enough to admit- I may have been wrong.

     Josh has dedicated much of his life to martial arts in general, Kempo in particular.  He began lessons when he was a freshman in high school because his football coach said that the players all needed to find something to make them more flexible.  Once he started- he never looked back.  Josh worked very hard and in just a couple of years, when he was 16, he began teaching at his dojo.  He loves sharing what he has learned with his students.

Josh being silly at the China section of Epcot

     The other day we were playing phone tag.  We talk almost every day on the phone and we are both pretty busy during the day so that was not so unusual.  We finally connected during my afternoon break.  It turns out that he was trying to reach me for advice.  He said "Mama, I have a new student starting this week.  She is very young and has JRA.  I would like to know how to work with her so that I can teach her and treat her just like the rest of my students, without causing her more pain.  You have been living with this pain so long that I know you can help me shift my style so that she will not feel like I am singling her out because I know from you that all you want is to be treated like you are normal."  He explained that he had spoken with her father who told him where the young lady had her particular challenges and Josh had already asked what joints were the most painful for her so that he could design a somewhat modified program for her.  We talked a while longer and I gave some suggestions before signing off.  Once we said our "Bye, I love yous" I sat in my car and just let the tears come for a few minutes.  I was so proud that he recognized that there ARE particular challenges that we who live with this disease face.  I was proud that he had taken the time to talk to the father and ask good questions so that he could effectively teach this young lady without exacerbating her pain.  I was moved to know that he values my knowledge of his craft combined with my handling of RA (and Fibro) to feel that I would be a resource to help him tailor his teaching for this girl.  Most of all, I finally feel that he actually understands what it is that I go through, at least a little, and for that I was thankful.  

     It's so hard to explain what it is that we go through to people who see us everyday, much less to those who live so far away and don't see us regularly.  He has never seen me have to use my cane.  He has never seen me struggle to make it up the stairs to my bed.  He has never seen me so exhausted that I cannot function- and still cannot sleep due to insomnia.  I don't like to complain about how I am feeling- I feel it does no good yet somehow there is at least a glimmer of understanding there- and that is all I can ask for with us being so far apart geographically.  

Tuesday, August 7, 2012

Rebounding from burnout.

"I have heard there are troubles of more than one kind. 
Some come from ahead and some come from behind. 
But I've bought a big bat. I'm all ready you see. 
Now my troubles are going to have troubles with me!" 

- Dr. Seuss

It's that time of year- back to school.  For many that means the deep sigh of sending the tots off for 6-8 hours of education.  For many, it's a break.  Not so much when you are in my business.  I have a bazillion things to get ready- and the deadline for a lot of them is next Monday.  I have been positively frantic and I have been a bit short handed at work which lead to a minor bout of burnout.  I haven't been able to stop my brain from going in 47 directions at once. My to-do list is a list of lists- but that's all I have been writing.  I haven't been able to write here, on my latest project or even in my journal because my brain couldn't get beyond all of the tasks I have to do.  Making the decision as to what to make for dinner had become a major chore. I was exhausted when I went to bed and exhausted when I woke up.  I had pushed and pushed myself until I was ready to both collapse and pull my hair out-at the same time.  I needed a break- so last week I took one.  I left work Wednesday afternoon with the intention of taking two vacation days and the weekend to just be a lump and rest.  

Well, despite daily (and sometimes multiple daily) phone calls from work- I slowly found myself leveling off.  One day- I didn't even get out of my pajamas. One day, I read until my eyes closed, took a nap, and read some more.  I caught up on personal emails.  I played with the dogs.  I finished watching the first 7 seasons of Supernatural.  Hubby and I *finally* got to see The Dark Knight Rises then went next door to Meijer and picked up live lobsters on the way home to make a small feast.  Much too quickly it was Monday again and though I could feel the tension creep back into my shoulders and neck, it was back to work.  

I still have a million things to do.  I still have lists of lists but where the burnout was consuming me, it has been relegated to the back corner of my brain.  The time off gave me just enough perspective to see that by taking each day by day I WILL make it through this season.  


On a side note- yesterday I received a really neat honor.  This little blog has been named to's 22 Best Rheumatoid Arthritis Blogs of 2012  I am in great company as most of these are blogs that I subscribe to, written by people much brighter than I am feeling these days.  I found this out yesterday, just when I was at a low point of the "going back to work" Monday-afternoon-blues and it made my entire day.  I urge you to check out this list.  Flipping through the slideshow you will see some familiar names (Congrats RA Guy, Kelly, Wren, Deb from ABCsofRa, Cateepoo!) and will discover new blogs that come from all different viewpoints and walks of life.  You won't be sorry! 

Tuesday, July 24, 2012

Spinning out of control.

I wonder if this happens to anyone else.  When I start to flare in even a minor way, it affects every other part of my life.  I don't mean depression or inability to do things.  I start beating myself up.

For example.  I have been doing very well.  SO well, in fact, that I had eased off my pain meds and was only taking my Orencia.  I was so happy- I am sure some of you have an idea just how happy.  Then it started.  My lower right side of my back is hurting.  Hurting a lot.  Hurting; back on the pain meds, can't get comfortable to sleep, hurts to sit-stand-lay;hurting.  This leads me to the "I hate this, I hate my body" thinking.  That leads to "I hate my body; if I wasn't so fat, maybe this wouldn't happen."  "I hate my body; I am getting old and ugly."  "I hate my body; If I could just follow through on exercise- I could lose the weight and blah, blah, blah"  I am sure you see where I am going here.

This morning, I sent a message to my baby sister in our private weight loss group on Facebook. I started thinking about my sisters.  One had a gastric bypass and looks terrific.  She was (in my mother's words) so focused and so determined and did everything the doctor said to the letter.  She did it exactly the right way.  The other sister went through marriage difficulties and ended up separating from her husband.  When she moved out, she found free time on her hands as they share custody and she started using her time to go to the gym.  She looks like she did in high school.  I cannot express how proud I am of them.  In my current state of mind that started me spinning.

It started with " I am so proud of them- they are taking great care of themselves and doing this for themselves and it shows."  That wound around to "Why can't I do that? I always make an excuse.  There's no reason.  I don't have kids at home.  It's only a half hour to an hour of my time each day.  Who cares if I am too tired?  Who cares if I am hurting?  If I really wanted this I would push through the "tired" and the pain and get off my ass. God I am stupid and lazy!"

I know what I need to do.  I have to get off this merry-go-round.  I have to celebrate when I DO do something right (like eating right, which I try to do all of the time) and when I DO exercise (like yesterday when I did a cycle of yoga at home).  I have to find a way to get out of my own head and push through the cycle of kicking myself while I am down and refocus on my positive side.  The hard part will be doing it.

So my question is this- does this happen to you?  If so, how do you get out of this?