The Tough Questions

     I have done a whole lot of soul searching  in the last few years as I made my way along the path to positivity and gratitude.  As I picked my way through what is both in my brain and in my heart, I learned a lot about who I am, how I handle different situations, where my true values lay, and how to make the right decisions for ME.

There are two questions in my own personal development journey, however, that I have yet to be able to answer. They have me stumped!

1. If you knew that there was absolutely no chance of failure and you could do anything that you want, what  would you do? 
2.   If money was no object, what would you do with your life?  

     I know that the questions seem similar, but at the core they are very different.  When you have to earn a living you are willing to do a lot to make it a good living.  Many, many people do work that they are not particularly fond of if it means supporting themselves and their families.  When you don't have to worry about earning a living, the options grow exponentially and in some ways are very different.

     I don't know for certain what it is about these two questions but when I try to answer them, when I look in my head and in my heart, I stop dead.  Oh, I can think of things, but it's as if I have a commitment issue with this particular line of questions.  It is as if answering them is TOO final.  Like once I put it to paper, computer, whatever, I can't change my mind.  And goodness knows that I am good at changing my mind as to what I want to "be when I grow up."  I think it goes back to my Daddy's old saying- I just can't decide if I want to be a Ballerina or a Cowboy.  When I try to answer these, when I open myself up and try to reconcile what my head says and what my heart says, the options come so loud and so fast and get so mixed up that I can't sort them out and discard the "rubbish".  There's also the fear that I might say "Okay, this is what I would do in this situation and this is what I would do in that" and I would miss out on something that would truly bring me to my bliss.

     The irony here is that both of them are so purely hypothetical.  Failure is always an option.  Even though I am completely reconciled with the fact that we can learn so many important lessons from our failures- who wants to fail?  And as for question two- oh, I have so many ideas as to what I would do with my life if I were independently wealthy.  So many that I could not fit them all in if I had two lifetimes and 100% health.  When I start picking and choosing, I create the spiderweb of how any single life decision, big or small, can change everything  and that brings us back to the dilemma.  What would I do?  I just don't know for certain.  

Who is on your team?

I read a lot of posts about Rheumatoid Arthritis, Fibromyalgia and related illnesses.  There are some terrific bloggers out there (shout out to @ArthritisAshley @rawarrior @RAGuy @wren ) as well as groups on Facebook and articles from Arthritis Today that are really informative.  When reading articles and posts, I often read the comments as well because I know we all have a different perspective and I feel that we can learn from one another, even if it's what not to do.

 I have mentioned before that I don't often participate in the different online forums because I find them horribly depressing.  The folks who are not "happy" unless everyone knows how miserable they constantly are just bring me down.  Weeding through that can be tough but, those posters aside, I have seen two common recurring themes among those who are struggling, whether they are newly diagnosed or in the midst of their illness.  Those two themes are pain that is not managed and a lack of support.  

I am very sad for anyone who does not have a support system.  I often see stories about spouses, friends or families that just don't understand what "we" are going through.  More often the issue is that while at first everyone is understanding, after a time the people around them get tired of taking care of them, get tired of hearing about the pain, get tired of changing plans because of the exhaustion.  This is compounded by the "invisibility" of our illnesses.  It's not like we are wearing a cast or have visible bruises or scars.  We look fairly normal on the outside while inside our bodies there is a war being waged.   I can see how that would be frustrating for someone who is not feeling the constant pain, who doesn't know the exhaustion, who only sees that we cannot (maybe WILL not in their minds) get out of bed or go to work or pick up the house or care for the children or whatever it is that they expect.  It's a game changer when we are living with a chronic illness and not just as the patient.  I understand that.  That does not mean that there is any excuse for giving up on, for not believing in, a loved one.

I was reading several of this kind of post last night before I went to sleep.  I was sitting in my bed with Auggie resting his face on one knee and my iPad on the other.  Hubby was downstairs, watching his TV and Harley was with him.  This is a common position for all of us.  I was exhausted.  I am in the midst of another round of insomnia and had been up since 1:47am (I slept till 2 today- yay me!) and it was taking its toll.  Even though I had been up for far too long, even though my eyes kept drooping and my body said "just lay down", my mind would not shut down and let me rest.  When I am like that, I am VERY cranky. Everything irritates me.  Hubby knows this and gives me time to get to sleep before he comes to bed.  It's better all around that way.

As I read through the comments at the end of the article and was thinking about my current situation I realized again how fortunate that I am to be blessed with a terrific support system.  My hubby and son, my parents, my sisters, my friends, my colleagues and even my puppies give me a myriad of people to talk to, to lean on when I am having a rough spot.  It's a rare occasion when any of them makes me feel like they don't understand, sympathize or support what I am going through.  They, along with my Rheumatologist and my boss (who also lives with RA) give me a whole team of people who help me stay positive, who help me research new drugs and findings, who pick me up when I am down, who keep me fighting when I feel like just giving up and letting the illnesses take their toll.  The whole team just wants the very best for me in terms of treatment and in my health and when you have a team like this, it makes you want to fight all the harder so that all of their support is not for nothing.

So who is on your team?  Who in your life lifts you up and makes you a better person?  

Things I am obsessed with this week.

Okay, maybe not OBSESSED with but certainly fascinated by:

Swagbucks - This website allows you to earn "points" or "swagbucks" for doing things like searching using their search bar, responding to polls, answering surveys and viewing special offers.  You don't have to buy anything- but if you choose to shop through their store, you earn points.  The more you do, the more you earn.  Me- I am pretty passive but still manage to earn enough to redeem every other month or so. With the "bucks" you can redeem for items ranging from mp3 players to gift cards.  I have personally gotten half a dozen Barnes and Noble gift cards and most recently an iTunes gift card.  It's a neat site.  If you are interested- contact me and I will send you an invite because successful referrals earns you points as well.

Flipboard - Flipboard describes itself as a pocket-sized social magazine.  It is my very favorite app on both my iPad and my iPhone.  In addition to keeping me up to date on my Facebook Wall and Twitter Feed (you cannot post from flipboard but the feeds and there to view) I also read my News, keep up on Tech Innovations, Lifestyle blogs, The Happiness Project, my Google Reader and other feeds all in one spot.  You can search anything that interests you and it will give link you to blogs, Twitter feeds, Facebook pages, Flickr photos etc that apply to your search term.  They also have a "Best of Flipboard" that gives you suggestions.  I have found the most gorgeous photos  (check out Spooky New Mexico) that way.  Literally breathtaking.  I also have found neat blogs, which brings me to my next item:

The Burning House - There is a really cool blog called The Burning House.  The blog asks the question: "If your house was burning, what would you take with you? It's a conflict between what's practical, valuable and sentimental. What you would take reflects your interests, background and priorities. Think of it as an interview condensed into one question."  The caveat is that your family and your pets are safe- so what would you take?  They invite you to think of those things you would take, lay them out on the floor or a table, take a photo of it and upload it along with a little biographical info.  I love this site.  It's so fascinating to see what people would take with them.  The funny thing is that every time I think I know what I would take, I see something that is in someone else's collection and it reminds me of something that means a lot to me so I change my mind again and again.  It really makes you dig down deep and think about what your "things" mean to you.

And last but not least; Pinterest - Oh Pinterest how I love thee.  Pinterest is another form of social media.  Think of it as a giant bulletin board for all things that interest you.  I have created boards for Recipes to Try, Quotes, Crafts, Decorating Ideas, Things I Love and more.  You can just go nuts creating your boards.  After you create your initial boards, you browse through until you find things to "pin" to your boards.  As you find things that interest you and pin them you can check out the boards belonging to the  person who pinned it before you and if you like their things you can "follow" any or all of their boards so that as they pin more, you see it in your feed and find new ideas.  You can also, by signing in with your Facebook/Twitter/Flickr account see who in your social media circles are already on Pinterest so you can follow them too.  It's a lot of fun.  Personally- I have 18 boards created with 333 pins so far.  When I have time, I sign in, scroll through my feed and always find something to pin.  Heck- my recipes board alone has 90 pins and gives me inspiration for my weekly meal planning.  Pinterest is currently in beta phase so it's not open to everyone.  If you check it out and decide that it's something for you, give me a holler and I will send you an invite.

Thats it- that's what I am obsessed with this week!  These things make me happy and let me destress.  What are some of your favorite things?  

Crazy Weather, Insomnia and other Train Wrecks

It's 3am my time.  It's the 22nd of January. It's 58 degrees here in Kentuckiana and we have severe storms sitting right on top of us for two more hours.  I got about an hour of dozing type sleep and then the barometric pressure started going up, up, up and all the usual joints started throbbing.  It has NOT been a fun night.  On the positive side- last week's storm brought us tornadoes and a cold snap.  This storm is possibly bringing tornadoes as well- but it's going to be in the 40's and 50's all week.  Now THIS is my kind of winter.  I don't care about getting wet.  I usually just toss my hair up anyway and it's not like I am sweet enough to melt.  I just loathe the snow and the closer we get to spring without it- the happier I am. 

As a football fan in general and a New England Patriots fan in particular, I literally bit the polish off of my nails during "our" game.  I was all pumped up and mentally ready for overtime when the Raven's kicker missed the field goal and ended the game.  That, of course, means that "we" are going to the SUPERBOWL!  If any of the Pats are reading this- fly in to Louisville and I will cook you a home cooked dinner on your way to Indy!  As for the Giants/SF game- I was listening with half an ear and popping in for replays but I am sure that my sister (the Giants fan) and all of the other fans were on the edge of their seats as well.  

I don't know if you have ever seen the show Toddlers and Tiaras.  I saw my first whole episode the other night and I was more than a little horrified.  It was like a train wreck that I just couldn't stop watching!  I was so pulled in that I DVR'd several more episodes and have been watching it all day today.  I cannot believe the behavior of most of these kids.  More- I cannot believe the parents.  I get it- really I do.  I know that TLC edits many, many hours of footage to show us the worst for the entertainment value.  That said- if my child ever spoke to me the way these kids speak to their parents, if he ever threw the hissy fits these kids throw and get away with- I would swat his butt so fast he would not know what hit him.  On the flip side- these parents not only tolerate it, they create it.  I saw kids aged 2-7 years old sucking down Red Bull, Mountain Dew, Sugar Cubes and Pixy Stix like they were going out of style.  Not just sucking them down but parents feeding them to them in sippy cups and whatnot.  One parent even admitted to going through FIFTEEN BAGS of Pixy Stix at one pageant.  Nothing like hopping your kid up so they will perform and then standing by and watching as they melt down as they hit the sugar crash.  I just couldn't believe it.  I go back and forth between thinking that these kids are horrible and wanting to smack the parents who created the monster.  While I don't agree with a lot of their detractors who say that pageants in general are child abuse- I do think that the way some of the parents talk to their kids and drag them around borders on abusive at times. I believe that the amount these parents spend on this stuff (one parent admitted to spending close to $30,000 a year) is beyond ridiculous.  I also think these "glitz" pageants are a haven for pedophiles with the photos of these itty bitty girls looking either like china dolls or 16 year olds all over the internet.  It will be interesting to see if TLC follows these kids as they grow up because their parents are in for some big trouble.  Makes me very grateful to have had a boy.  Makes me even more grateful that we didn't expose him to a world where he was constantly and literally judged on his looks.  I am glad that, for any and all mistakes that we made, he was allowed to be a kid as much as he could.  

Well- that's all I've got for now!  Happy Monday everyone!   

An RA update and hoping I don't jinx myself

**Disclaimer** I do not advocate that you make any changes in your own routine without consulting your physician.  

I have a confession to make.  Due to timing issues, I have not had an Orencia infusion since October.  After that infusion, the next would have been over Thanksgiving weekend-  after that I was crazy busy at work and then came Christmas and then I was in Rush.  I have kept up on my Tramadol as well as the Flexeril and Neurontin that I take for my fibro but it's been almost 3 mos since the last infusion.  I believe that means the drug is well gone from my system.  When I realized that I would miss the first infusion, I was a little nervous.  When I realized that I would miss the second- I was a little scared.  By the third, I was in an "Oh Crap!" state of mind, especially since it coincided with the time of year when I am working 10-16 hours a day for several weeks.  And then I noticed something; 

The giant flare that I have been expecting?  It hasn't reared its ugly head yet.  Note I say YET.  The longer I go, the more I worry that it is going to sneak up on me and kick me right in the butt.  That said- I feel terrific.  I feel better- in terms of my RA- than I have in just over a year.  Yes- the RA is still there and I still have morning stiffness and evening achyness and though it's given me reminders when I overdo- generally I feel that it's just hiding there, waiting for its moment to pounce. I didn't even end up having to use my cane after all of those long days running around, lifting boxes and wearing myself out.  That's the first time in a couple of years!  If anything, this has given me more awareness in the difference in the way my body feels between the RA and the Fibromyalgia.  

As for the Fibro- whooo-boy is it still talking to me.  My muscles have hollered loud and clear to let me know that I am still in the grips of that particular illness.  My back still devils me from neck to pelvis on a daily basis, the chronic fatigue is still ever-present.  All of the muscles across the body feel like a bad toothache but I can live with it since the joints are not joining that symphony as much as usual.  I also feel that if I were able to make it to my yoga class (or had the discipline to do it at home) that I have missed due to my work schedule since Thanksgiving- even my fibro might settle down a bit.  I know for certain that when I make it to the Y to go to my yoga class and spend time in the therapy pool, the pain in my muscles eases to a dull throb.  

So my "plan" is simple.  I have my next appointment with my rheumatologist in February.  Assuming I have no RA flare (knock wood) between now and then, I will talk to her about NOT going back on the Orencia- not going back on anything- until such time as my body tells me that it's time.  Tuesday I am going back to my yoga class and am planning to go early so I can do some time in the hot tub end of the therapy pool as well.  I am also going to look at my schedule and see when else I can carve out time to go back the therapy pool and do some exercising in that pool.  I am also going to try again to....wait for it....quit smoking. I have a cache of the "electronic" cigarettes ready to go.  This will help me ease into it rather than going cold turkey because I tend to get REALLY ugly when I go cold turkey.  In the mornings, my no smoking plan is to get out there,  rain or shine, and take a walk while my coffee brews.  That I am going to start this weekend so I can make it a habit.  I have my iPhone ready- my music loaded on and earbuds waiting, sweats (with pockets) that are comfy to sleep in so I can just get up and go.  I have sneakers pulled out and ready to be put on.  The goal is that by 45 (which is FLYING toward me) I will be smoke free and still off the "big" meds.  

I just hope that by finally "talking" about it- I don't jinx myself!  

Happy Friday everyone! 

Internet Piracy and the effects on the "little guy"

I am a little fired up this morning.  An author whose works I love and who I personally admire, was discussing the effect that internet piracy is having on his life.  In the discussion he linked us to an article on MotherJones.com (see my previous tweet if you follow me on twitter) and the comments infuriated me.  My reply to the comments is this:

Dan from CT, just for curiosity's sake, what is it that you do? 
 Are you seriously arguing that if I work for years on a book, a song, a movie or any other creative work and you take a file of that work and publish it as your own that you have not stolen from me?
 You have not stolen my work?  You have not stolen the hours that I spent putting pen to paper or fingers to keys, or whatever it took to make that idea a reality?  You have not stolen the income that I may have generated from those words?  Really?
Are you saying that if you build a business, one that you work your fingers to the bone and pour your blood, sweat and tears into that you have no right to expect to leave it as a legacy for your family when you are gone?  That, in the event that you are able to make this into a full time career that I should be able to just come and take your product and give it away to anyone that wants it?
Are you saying that you should be able to walk into any book store, "record" store, video store and pluck those items off of the shelf and walk out with them and use them for yourself or give them away?  Piracy of music, books, articles, movies is EXACTLY the same thing as if you had done exactly that.   Those e-books that I buy for my Nook are exactly like the books that I buy from the shelves at Barnes & Noble, the digital copies of my movies that I buy for my iPad and the music that I buy from iTunes are exactly like the DVDs and CDs that I buy at Best Buy.  They are mine to enjoy but I do not have the right to copy them and share them with the world.   
Pirates are not "just" stealing from the big movie studios, the record companies, the publishing house.  They are directly stealing from the man or woman who is trying to support their family (if they are very fortunate) or who is sitting up in the middle of the night after working a traditional job all day putting their passion, their ideas and their creativity on the line with the hopes of not only creating a legacy but leaving  a little something for their children and grandchildren.   The big businesses behind the publishing of the works will feel a dent- but the true impact is felt by the little guy who pours their lives into creating the actual product.  

When most people think of authors, musicians, etc, they think of those who have found vast success.  They think of the JK Rowlings, the Steven Kings, the Nora Roberts, the Rolling Stones, the Kiss, or the Lady Antebellums of the world.  But even those people were, at one time, working their tails off to get that first book, song, etc out into the world.  Those people are STILL working- beyond doing the actual creative work on a deadline there are the appearances, there are the tours, there are the other people that they pay for publicity, for management, for a myriad of other things.  More- there are the THOUSANDS upon THOUSANDS of people who are anywhere from writing in the middle of the night and self-publishing (like me) to the author that I was talking to this morning ( @mrsellars on twitter) who has moderate success in his genre and is able to write full time, but is by no stretch of the imagination living in the lap of luxury.  We are the ones who are affected first.  While the publishing companies take a hit, and the big artists and authors may feel a dent, those who are down at the ground floor are taking the hardest hit.  

Let me tell you a hard truth about writing.  My book is by NO stretch of the imagination a bestseller.  It is, I feel, a "decent" first work and has taught me a lot in the process, but the publisher I would like to work with (Rodale Press) would not even give it a look at this stage of my creative process.  I have sold some copies of my little e-book.  I have made...maybe $150 so far from the sales after the Pub-it split since the day I published.  Believe me when I say that I will not be quitting my day job anytime soon for that.   On the other hand- every time that I get that little notification from BN that they have a little money for me from sales and more importantly every single time I get feedback from someone who has read the book  - I experience such a thrill that all of those sleepless nights in front of this screen was worth it.  That said- why, if someone will steal the work and put it out online for anyone to take, would Rodale even bother with a little, new writer such as me.  There will be nothing in it for them to continue to invest in writers if the work is out there for the taking.

My work is not well known enough that anyone has tried to pirate it.  That double edged sword (because really- I would LOVE to have enough people care about it that it makes that kind of an impact) makes me feel grateful that I am not having all of that work, all of that time, all of those words that came from my head and my heart  stolen from me.  It's a violation.  It's blatant theft.  I can only imagine that I would feel as if someone had ripped away a piece of me.

File sharing is robbery- plain and simple.  It's not, by any of the stretch of the imagination, a "Robin Hood" act.  They are not robbing from the rich and giving to the poor.  They are just stealing for the act of stealing.  The only way to stop it is to stand up and be heard.  I don't have an answer other than to speak out and hope my voice can make a difference.  

The Challenge that is Insomnia

I woke up this morning and actually cheered myself.  I was just that happy that I had slept until from 11-3am.  The sad thing is that it took an extra Neurontin and an extra Tramadol to my already heavy cocktail of pain meds and muscle relaxers.  I will take it any way I can get it.

I have a pretty high pain tolerance.  You have to be able to tolerate the pain if you are going to live with Rheumatoid Arthritis and Fibromyalgia and keep on working and being productive and conquer all of the obstacles that come along with the roller coaster ride of these two illnesses.  My Achilles Heel is insomnia.  Many, many nights I am awake-wide awake- several times throughout the night before I give up and just get up.  This week alone I have been up for the day between 1:30 and 1:45 every morning.  That is not conducive to being productive at work- and it is especially not conducive for dealing with customers.  Being tired makes me very cranky.  Let me emphasize:  VERY CRANKY.  Being cranky every single day is not good for me or anyone else around me.  I try very hard to not let it come through but when I am super tired, I am just one step away from having to close my door to my office and shut myself off or just plain blowing up or having a melt down.

I had a mini-melt down last Friday.  We had a pretty important task that had to be done.  It was a part of a task that my staff had been working on early in the week but when I discussed the next steps- you could hear crickets. I honestly felt like I was losing it.  I actually asked out loud "Am I crazy or were you not working on this for two solid days this week? You CANNOT tell me you don't know what I am talking about!"  I was so agitated that I could hear my voice (and feel my blood pressure) rising- something I try to contain.  I finally got up and walked away.  I had to cool down for a few minutes before I said something that I shouldn't.  That is a very uncomfortable place to be in; being so angry that you are seconds from verbal diarrhea that would be impossible to take back.  In general, I am pretty good about controlling that impulse, but when I am in the midst of an insomnia cycle, it's only seconds away because everything (and most everyone) irritates me.

When I am in this cycle, positivity is incredibly hard to acheive.  Gratitude is equally hard because it feels like it is not genuine when I am struggling so much.  Ironically, being in this space gives me more opportunities to actually BE thankful.  Thankful that I was able to get up and walk away.  Thankful that I can push through the brain fog and thoughtfully accomplish a task.  Thankful that I am not quite to the point that it is fully debilitating yet.  Thankful that I made it through another day.

I know down deep that this is just another challenge to be conquered in the world of living with a chronic illness.  I know that down deep I will find a way to turn this into a blessing in disguise- I just have to find that one thing that will flip that switch and turn around my mindset.  

Catching up

Phew!  It's been a busy couple of weeks around here! I haven't posted since the 21st- which, incidentally was my baby sister's 40th birthday.   I had the pleasure of spending Christmas with my NC sister (the birthday girl) and her family at Mom and Dad's, then back home on Monday supposedly to get back to work on Tuesday.  While I was at Mom and Dad's I refused to use their computer  and I don't like using my email on my iPad or iPhone (I hate that it doesn't delete them from the account, only puts them in an all mail section) so I was only online minimally and when we got home I had several hundred O_o emails to go through.  But we got home and unpacked, got the house in order and my email under control so I could go back to work with minimal stress.  Then it happened.  All of the running and pushing myself that I have done recently fought back and knocked me on my butt.  Despite TRYING to go to work every day, I spent the better part of Tuesday, Wednesday and Thursday in my bed, nibbling on saltines and drinking tea.  Friday I got myself all caffeined-up and worked a little longer than a full day and felt like we were in a good place when I left.

This past weekend, I have been on a bit of a techno-break.  I spend a lot more time on my PC than I do my iPad so I shut the PC off and spent the weekend out in the living room.  We didn't do anything exciting for New Year's eve (Big Bang Theory marathon and popcorn from Hubby's new theater style popcorn machine) which was fine with both of us.  Yesterday it was a mini-marathon of Harry Potter movies and relaxing.

Today I went back to work for a few hours before stopping at the grocery to pick up some food to last us through my "rush" period that starts tomorrow and ends on MLK day.  Though I love this time of year because I am busy, busy, busy at work, when I get home all I want to do is walk the pups and get to bed so my home life (and sleep schedule) suffers.  Hubby didn't chose this career for me so I try to make sure I can make it as easy on him as possible by buying quick meals and using my crock pot as much as I can so it doesn't all fall on him.  I think I am ready though.  I bought stuff to make "grab and go" meals- okay, more snacks than meals- for me and then supplies so one of us can cook quickly when I get home.

As for my RA- well, things have been a bit...off.  Because of my schedule and because of the holidays, I haven't had an infusion since October.  I was worried that I was setting myself up for mega-flares but it hasn't happened.  In fact, I haven't felt any different than I have since I went off the year long course of prednisone.  What that tells me is that the Orencia is not making a difference one way or the other.  So, I have decided that I will call tomorrow and cancel the January infusion and hold off until I see my doc in February.  Maybe it's time for a different medication- maybe it's time to give my body a break for a while and not do any more dmards or biologics.  Now- I am still on my "pain" meds and the muscle relaxers and neurontin for the fibro, but if the Orencia is not doing anything, it is one VERY expensive exercise in futility.

So that's me- that's where I am.  I hope you all had a peaceful and pain-free Christmas and New Year and that you have a healthy and happy 2012!