I have been given a minor miracle!

I know- that sounds moderately dramatic but I am ready to shout from the rooftops.  I saw my new Primary Care on Tuesday.  We had a little "get to know you" appointment and I mentioned the months and months (and months) of insomnia.  Well, she looked at my list of meds and decided that we would try Lunesta.  She gave me a week's supply and said that if that didn't work, we could try Ambien and if THAT didn't work- I would have to take my happy self to a sleep clinic for a study.

Tuesday night, I took my little blue pill around 7:30.  Hubby and I watched a little television and about 30 minutes later I got up to grab a glass of water.  You would have thought I was flat out drunk I was walking so wobbly.  I decided that meant it was time for bed.  Got up the stairs, opened my book and that is the last thing I remember.  Evidently I was awake for a little while longer.  My bookmark was pages away from where it had been the night before, and Harley was on my bed (with 12" bed risers, she can't get up solo) when Hubby came up to bed- but I was KNOCKED out.  I woke up 7 hours later feeling completely rested and relaxed.  I swear I could hear the Hallelujah Chorus singing behind me.  That said- I didn't want to get too excited because though I felt better than I have in as long as I can remember- When I tried Tylenol PM and Advil PM, they gave me one good night's sleep and then nothing.  They also didn't allow me to truly relax because I could feel a difference in my hands and feet when I tried the OTC compared to this.

Wednesday came and I gave it a shot again.  I took it in my bedroom and lay down with my book.  7 hours later- I hopped out of bed raring to go.

Thursday, I was a little concerned.  Thought I went right to sleep I was up at 2 am.  HOWEVER- I was up for about 90 minutes and then was able to go back up and go to sleep until 6 and I didn't wake up all groggy.  Though I mentally knew I had been up in the middle of the night- I didn't feel like it.  AND- it's not the "fault" of the drug that I woke.  Hubby fell asleep in his recliner (he's SO becoming our fathers!) and at around 2, the dogs were "fighting" over his pillows.  When I thought about it during the day Friday, I was actually feeling better about it because I am sensitive to antihistimines and when they knock me out you cannot wake me up at all.  So now I know that the Lunesta will not do that to me.

Last night, I woke up again.  I got out of the bed, went downstairs, watched an hour of TV (I don't even remember what I watched-lol) and then went right back to bed until my alarm went off.

Considering that last week I was waking up between midnight and 2am and was up for the day- I cannot tell you how much better this feels.  I was sitting at dinner with my husband last night and I realized that though I have been working like a mad woman all week to prep for my annual inventory and my upcoming trip to Florida (business meeting- not pleasure) I have not once gotten home and felt like the only thing I could do is crawl on my couch and pass out for a few hours.

Needless to say, I contacted my doctor's office and my RX will be ready to pick up this afternoon.  I have been feeling, when I am sitting up in the middle of the night that I am SO sick and tired of being sick and tired.  This past week has given me hope that sleep will once again be mine.

Have a wonderful weekend!    

Sleepless Night = Two Unrelated Rants

I think I slept, off and on,  a total of 2 hours last night. Of course, this can't be a weekend but rather I have 2 doctor's appointments today (one for a blood draw for an RA study and one with a new Primary Care) and then work until late.  Rather than being cranky at work, I am going to get my cranky out now with two things that are making me nuts.

Rant One:  let's talk pharmacy policy.  I cannot express HOW BEYOND irritated I am with my pharmacy at the moment. I am not even going to discuss the price of medications, though anyone using a biologic for one of the chronic illnesses can tell you how ridiculous that is!  Here is my gripe.

I was on infusion Orencia for what, about a year?  The way it worked was that my doc wrote the RX for a year, every three months my specialty pharmacy would send, by overnight service, 3 vials of the drug directly to my doctor's office.  When I went for my appointment and was mid-saline drip, they would mix it up in the office.  I never saw the drug until it was hooked up to my IV.  I didn't see it, I didn't touch it, I didn't so much as breathe in its general direction.  In November, they sent my three month supply to the office and my life went to hell in a handbasket schedule-wise and I was not able to have my infusion in November, December or January.

Last month, I saw my rheumy and we made the decision to switch me to the injectable form of Orencia.  The order was called in and I got my three months worth of injections over-nighted and began my injections.  During all of the switch-over, on one of my many discussions with the pharmacy, I asked them about the unused infusion meds.  They told me, in no uncertain terms, that they could not, would not, take that medication back from the doctor's office.  On one hand- I get it.  They can't take the chance that it has been tampered with.  On the other hand- it just infuriates me to no end.  When would it have been tampered with and by whom?  Do they think someone at my doctor's office would try and intentionally kill me?  Perhaps it's the delivery driver who is suspect- in which case- am I safe now?  Do they not have tamper-proof protections in place?  Do they not have the ability to test medications coming in?

Though it would have been *nice* to have a credit for my co-pay in place, it is not that.  It is the blatant WASTE of THOUSANDS of dollars of medication going into the trash.  Do you wonder why our meds are so expensive?  Here's a piece of the puzzle.  Okay- if they could not resell it, couldn't they donate it to someone who desperately needs biologics and cannot afford them?  Couldn't they return it to Bristol Meyers to be tested and repackaged?  I don't know about you but in my personal life I don't have a couple of thousand dollars to flush down the toilet, and goodness knows that it's the same in my professional life.  It just makes me ill to think about it.
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Rant Two:  Spam.  I hate Spam.  Spam Email, Spam Comments, Spam Posts.  It's easy enough to deal with in most cases, I know.

In one of my different "groups" I had a fairly tense "discussion" this past week about someone who was posting spam for their "real estate academy" in a Military Brats page.  Their "MO" was to post "testimonials" from a supposed retired military member.  Someone was defending them because of (what I feel was) that ruse.  My point- it was a page for "brats" (ie- military kids) to get together, share memories and talk about how growing up in the service made us unique among our peers.  Just because the testimonial was allegedly written by a retired military member- that does not make the poster a "brat" who was "sharing their business" (as my counterpoint in the debate called it as opposed to selling a real estate scam: which I call it), and does not make that testimonial true just because he slapped rank on the end of it.  Heck- I don't know that it would even be appropriate if it IS true since our little corner of the web is for military kids- not our parents.

In our RA/Fibro groups the barrage is fairly constant.  Every one of them claims that she or he has a cure.  I ignore it when I am of the mind, I report it when I am really annoyed, but it really bothers me that anyone would try to use our illness to sell us snake oil.   If only ONE person, who is already dealing with so much, falls for this and loses their money and peace of mind, it's too many.    

 I have pretty high filters on all of my email accounts and on this blog but I truly resent having to take the time to delete advertisement after advertisement from both my personal spam folders and the emails that come through that are meant as comments here.

 Worse- this morning I deleted 23 spam comments for porn and/or sex chats meant for here.  What in the world have I posted that makes these morons think that this crap; be it ads for fake Gucci purses, for ways to increase my web presence, or for "f*^k buddies" for myself or my readers would be appropriate or welcome?

So here's my note to the spammers.  We don't want you.  We don't want your products, your "opportunities" or whatever else you are selling.  You waste our time, you try our patience.  You are NOT WELCOME.  If- by chance- you make it through my filters, you will be deleted post haste.


Rants over.  

A new beginning every day

" No one can go back and make a brand new start my friends, but anyone can start from here and make a brand new end."    Dan Zandia

It was a rough wake up this morning.  I got a slow moving (thank goodness) elbow in the face from the other half as he was rolling over and hogging the bed. I hadn't slept well anyway as my neck has been stiff on the right side and my shoulder stiff on the left side for 2 days now and I couldn't get comfortable so that was all it took to get me out of bed before 3am.  Then, my brain kicked in and was thinking of all of the million things I have to do today.  My immediate thought as I flipped through the Rolodex of tasks to be done was "Hello Monday!"  I was about half way down the stair case when that thought hit me and I stopped in my tracks.  I  know myself well enough to know that if I got down the stairs still grumbling, I would let my day be "One of THOSE day." and that wasn't how I wanted to start my week.  I took a deep breath and said (out loud no less) "Okay- let's start over!"  

I came the rest of the way downstairs and clicked on the coffee pot then went in search of my pup.  He had dashed down the stairs in front of me so I knew he was around.  I sat down with him and started just rubbing his belly while I took a few deep breaths to get rid of all of the stress that had already mounted.  By the time my coffee finished brewing, Auggie was back to sleep and I was feeling significantly better.  I popped online and what did I see?  My son was on as well.  I had forgotten that he was working last night!  Finding him on while he was working afforded the opportunity for us to message back and forth for about an hour.  That certainly put a smile on my face. 

As I was no longer cranky I was able to start making a list of things I needed to get done for work this week, as well as a list for home.  Looking at it on paper let me put things in perspective.  As I looked at my list and was figuring out my time table- I started thinking.  It wasn't hubby's fault that we connected this morning, actually that means that he was sleeping well for a change.  It's no one's fault that my neck is stiff and sore and I know that all I can do is ride it out till it gets better.  Being up extra early gave me a chance to talk to the boy and it gave me some one on one time with my spoiled puppy.  It gave me extra time to plan my meals for the day and take my time doing the prep work. It really was not a bad thing after all.  

  It would have been easy to just keep on down those stairs and let the way I started my day dictate how the rest of it went. I could have wallowed in self pity for the literal pain in my neck.  I could have been angry because Jim flopped over on my side of the bed and popped me in the process.  I could have just let the crankiness influence how I saw my upcoming week and in turn allowed myself to be overwhelmed with all of the big things I have to do between now and my inventory on the 24th.  

 Instead, it was surprisingly easy to stop and flip it 180 degrees.  I have slathered my neck and shoulder with Tiger Balm Neck and Shoulder rub and it is a delightful warmth on those sore muscles. I have already cut a cantaloupe for a snack, blended my pineapple/blueberry/banana/yogurt smoothie for lunch and it's in the freezer.  I have portioned out my breakfast and pulled out the ingredients we need for our Na'an bread pizzas for dinner.  I have emailed a to do list to work, gotten dressed, tossed on a little makeup and enjoyed most of the pot of coffee I brewed. I have folded and put aside some of the clothes that I am wearing for my upcoming business trip.  All in all- it's been a productive morning.   All that is left is to pack my food, pack my iPad and phone and I will be able to dash out the door and get to work.  

 What a gift we have been given!  We can make the choice to make each and every day, each and every hour, each and every minute better than the last!  No matter what is happening in our lives, we can choose to see that glass as half full or half empty.  That power is ours and no one else's!    I have to agree with Buddha when he said:  

  "Each morning we are born again.  What we do today is what matters most."  

The Good and Bad- after effects of a tragedy.

In my neck of the woods, one week ago we had a horrific bunch of tornados come through.  I cannot begin to describe the devastation.  We have so very many people from surrounding towns that are now homeless because of the havoc that each tornado wreaked.  We also had over 39 people lose their lives in the process, including a young family of five.  From the beginning, their story just ripped my heart out. As with any tragedy the storms and the aftermath of the storms have brought out the best and worst in people.  Watching the news has been tough this week just because of the difference in the way folks have responded.  

Let's start with the bad.  I was absolutely appalled to see that in under 24 hours, our State Police had to issue a warning for the homeowners that were heading back to survey the damage that they would have to be cautious about entering their homes- not because what was left was so dangerous but because there had already been looters in the area.  Next was that there was a man who was caught loading up his van full of food after showing up at a food bank and impersonating a volunteer.  I am sorry for being so blunt, but anyone who would loot a home after this kind of event or would steal food from a food bank is nothing more than the scum of the earth.  What made my blood boil, and I don't know why I do this to myself, was the arm-chair quarterbacks who left truly ignorant comments on the different news stories online.  One example that nearly made my head explode was on a news story on msnbc about the family I referenced above.  While many of the comments were offering prayers for the community, there was a contingent who seemed to take great delight in posting how "stupid" the folks who lost their lives were for being in their homes when the tornado hit.  I saw comments about how they should have left their trailers and gone to Walmart to be safe (ummm, HELLO!  A Walmart was directly hit in Joplin last year and many inside died!) or that they should have gone here or there .  There was the "those people knew ahead of time- it's their own fault they died" group.  It literally made me sick to read the stupidity these people were posting.  It is obvious that the posters have never been through a tornado and that they are just miserable people in general.

On the opposite side, once again it has been proven that community comes together in the face of tragedy.  There have been everything from "cutathons" scheduled for this weekend, to telethons, to local company donating $10,000 in blankets and personal care items to help the folks who had to use a neighboring town's high school as a shelter.  Normal, everyday people rose to the occasion as well.  The Red Cross and the National Guard were organizing getting the donations to the victims and were so overwhelmed with donations of food, clothing, blanket and other items that they had to put a moratorium on everything except donations of food and cash.  What I found to be terrific, and I would estimate that it worked very well, was that the Red Cross wasn't just saying "we need cash donations." and leaving it at that.  Instead, they specifically requested donations of $10.00,  I know that in these tough economic times, if I were having a tough time financially,I would be more apt to answer a donation request of $10.  It gets the message out there that even small donations can make a world of difference.  It also allows you to reach a broader audience than if they had requested $50-$100 or just left it vague.  I know that I have, on occasion, had the feeling that I would like to help out in a situation but I couldn't afford to make a large donation (be it money or hours) and felt like the little I could afford wouldn't make enough of a difference to count.  With this tactic, it opened the doors to those who might feel the way I have.

As I began to notice some of these things I began to wonder; Do these folks (both the good and the bad) knew how the world perceives them?  I will admit to being the first to judge those who used this tragedy for their own personal gain, whether by stealing from the victims or by price gouging since some will have to start over and replace everything. If I were to type what I REALLY think of these people, it would turn the page blue.  On the opposite side of the coin, as I heard of all of the good stories, I just wanted to hug each and every one of them.

I feel that when we have this type of situation, whether it's an enormous storm that literally takes out entire towns, or a house fire or car accident that affects "only" one family, we get an accurate picture of our society.  It also gives us a clear picture of the media and their chosen coverage.  While the number of people who gave in some way, the spotlight lands on those who are using the situation as an opportunity to lie, cheat, steal and scam the victims.  We need to turn that around.  I think I will send letters to my favorite news channel as well as the local papers and express my dissatisfaction.  I don't know about you, but I would  MUCH rather read stories about the people who are out there on the front lines helping with the clean-up and recovery and see the "good" stories than give publicity to people who are out there for self-gain.  

Fighting your way back from illness and adversity.

I have been "in the process of sick" for several weeks now and it's getting old.  Hubby was sick for a while which started this whole thing.  First it was the nasty cold sore (which I get on my NOSE every time I am fighting a big cold/flu) and then it turned into hives.  I fought those off and in the process, the illness won.  I held on till last Saturday when I came home from work, took a nap and woke up feeling like what comes out of Harley's hind end.  That began round two of the fight back to "normal".

There is a saying that I tend to cling to when I am sick, feeling blue, not myself or just plain struggling:  

"Fake it till you make it."  

  Much of the idea behind the saying is that no matter now you really feel, you need to exude confidence while you reach inside and find that inner kernel REAL self confidence and let it grow.  It ties in with the whole "the more positive you are, the more positivity you bring to your life." While it's easy enough to "fake it" when you are in some situations, I find it a much harder prospect as I cough, sneeze, power through a box of tissues and just want nothing more than to crawl in my bed. This led me to look high and low for ways to make it so that when I was at work or out in public doing whatever I would not seem as ill as I was.  The majority of that came to what I was doing when I was NOT at work. What I came up with was a very simple list:

• Let your body dictate your tasks.  I know, it sounds so common sense, but how many times do you overdo just in the name of getting whatever it is done?  Personally, I tend to take on too much on a regular basis and by actually listening to my body and choosing my tasks accordingly, I have shortened the duration of this latest illness exponentially.  This applies to work as well as at home.
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• Nap Damn-it!  We all have a lot going on and I know some folks who would no more take the time to take a nap than they would walk up to a random stranger and punch them in the face.  Your body needing the rest so you can recouperate is not a sin.  It should not induce guilt or make you feel like you are lazy or are not living up to your own expectations.  If you are not a napper, think of it as a tool to let your body recharge since your battery is low to begin with. Me?  I love a good nap but rarely take one after 2-3 pm because I have enough trouble sleeping.  When I am ill and my body tells me that it needs sleep, a nap after work becomes my reward for having made it through the day and having accomplished what I set out to do.  When I am feeling at my worst, I have been known to go to my car on my break, set the alarm on my phone and give myself a 10 minute power nap to restore my ability to function at top level for a few more hours.  
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• Find things (or people) that make you laugh.  There is truth to the whole "Laughter is the Best Medicine" saying.  You cannot feel poorly if you are geniunely laughing.  That is not to say that the illness or pain of whatever ails you will go away completely, but in that moment you are not thinking about what ails you.  
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• Indulge a little.   When I am sick, comfort foods are my friend.  Chicken soup, mashed potatoes, jello, pudding and ice cream all make me feel like a kid again.  I don't go hog wild but I do let myself have a little of whatever it is that will make me feel warm inside.  
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• Give yourself a good soak.  When I am sick the accompanying muscle aches can set off a Fibro flare like nobody's business.  There's nothing better, when you are cold and achy than a nice, long soak in the tub.  I add epsom salts for the muscle aches and a blackberry/vanilla bubble bath and then soak until the water goes cold.  

I know that it seems to be fairly common sense, but unless you are taking care of yourself behind the scenes, those few hours a day that you need to be at the top of your game become that much harder.  When you do allow yourself a break at home, it is much easier to put on your "happy face" during the day.  

I also have a short list of things for when you are at work to keep you going until you can get home: 

• Bring your favorite comfort beverage.  I drink coffee like it's my job, but when I am sick I drink a lot of herbal tea.  It's not a big deal to bring tea bags, a mug and bottled water that I can nuke in the microwave to sip on in the afternoon.  
• Pack a lunch.  If you normally skip lunch or go to your cafeteria or get take out, it can be hard to find those foods that will  hit that comfort level and keep you feeling okay during the day.  Taking a few minutes to pack a lunch ensures that you have foods that will make you feel better and  keep your energy up.  
• Dress for comfort.  I live in pajamas when I am home and when I am not feeling well it takes tremendous effort to change into work clothes and get out of the house.  I am not by and stretch of the imagination a shopper but for this purpose (whether I am sick, sick or having a flare) I always have at least one set of clothing that is made of super soft fabric, has no buttons, snaps or zippers and that make me feel cozy even though I am working.  Incidentally, I also bring these on business trips because they wear me straight out and that comfort level makes things bearable.

I find that if I make a concerted effort to follow each of these tips, it gives me the strength to fight my illness full force.  Because I am taking care to make sure I am comfortable and nourished (both physically and mentally) it becomes so much easier to stay positive during the day when I need it most.  The last tip I would give is to really try to convey the positive side of things.  I am fully convinced that when, for example, someone asks how you are feeling if you say "I am feeling better, thanks!" even if it's just a *little* better, you will indeed start to feel better.  Each of these things, whether you do them all together or pick and choose what works for you, will give you the strength to fight off whatever ails you.
  

Viva La Revolution!

I don't know if you have seen this show on ABC- but there is a talk show right after my absolute favorite show (THE CHEW) called "The Revolution".  Sadly, there are talks about it only lasting a season (the daytime soap viewers are essentially boycotting anything that replaced "their" shows) but I think it's pretty terrific.

A little show info:  Like The Chew, it has 5 co-hosts:  Ty Pennington (Lifestyle/Design), Tim Gunn (Fashion/Style), Harley Pasternak (Exercise/Healthy Living), Dr. Jennifer Ashton (Women's Health/Patient Advocacy), and Dr. Tiffanie Davis-Henry (Therapist/Relationships).  Each week on the show, in addition to tips and advice, they follow the 5 month journey of a normal, everyday person who is trying to change their lives.  This week is "Reinvent Yourself" Week.

Here's what I love about this show.  It stresses in every way that any one of us can make changes, big or small, to our life.  They give advice on everything from relationships to weekend home projects to choosing clothing that looks good on every body size to mixing medications to- well, no topic is off limits.  As they are doing this, it's all from the outlook of inspiring you to make the changes that work within your own life to make it better.

If you have a chance- give it a shot.  You may find, as I often do, that you learn something new.  Not just from the experts, but about yourself.  

The Ability to Laugh At Myself

Can you laugh at yourself?  I find that the more stress I am under, the less I am able to keep the humor in my life, be it about myself, whatever situation I have going on, or anything else.  I also find that the less humor I have- the more I need it.

I didn't watch the Oscars.  On the one hand, the one that looks in the mirror every day, they depress me.  I don't find it fun to watch the parade of fashion that I could never wear.  On the other hand, I find them predictable.  I mean- I have 364 friends on Facebook, in ages ranging from 13 (my niece) to my parents and not one ever mentioned seeing, or even wanting to see, The Artist.  In fact- after it won I looked and only 1 theater in this area is even playing it.  The Academy always rewards the "Highbrow", no matter how good the "Blockbuster" turns out to be and if the idea is to celebrate cinema- they fail miserably.  They should recognize that those big money-makers are the only thing keeping the Hollywood Machine going. That's the end of my rant and I promise there is a point.  Rather than staying up watching it, I went to bed and also missed Jimmy Kimmel's after-show.  Now, I don't usually watch that either (I much prefer Jimmy Fallon to ALL of the other late night shows) but I miss Oprah's Oscar Show and she was going to be on there.  Well, if you didn't see it, I hope you can see this:

I found it embedded on Oprah's Pinterest page and I laughed and laughed.  Not only was she on there and poking fun at herself right along with Kimmel, but she pulled in Jennifer Aniston- another lady who has shown time and again that she doesn't take herself- or her fame- too seriously.

Once again, the universe has come together to give me a lesson at a time when I need it most.  I was feeling tired and cranky.  I have a widespread rash- looks like some type of contact thing ( I am thinking Miss Harley's medicated shampoo from the bath we gave her in our bath tub Sunday) and there seems to be some communication breakdown between my doctor's office and my pharmacy because my rheumy's office has record of faxing my new script (we are going to Orencia self-injections) and my pharmacy has no record of receiving it.  Add in payroll budgeting and sick hubby and a cold sore on my nose which is usually a sure sign I am following him into sick-land and I am a big old ball of stress.  So I came home yesterday, took some benadryl and an Aveeno infused shower and frumped around until I was ready for bed.  Took the iPad to bed with me and shortly after firing up my Pinterest app, found this video.  I giggled and giggled, then watched it again.

I want to be that comfortable in my skin.  I want to be able to see outside all of the little-piling-up-and-making-me-crazy details and look at the big picture.  I want to be able to step back and see the irony and laugh.  I know, deep down, that when I can accomplish that- it puts all of the little things back in perspective.       When I have my perspective; I can handle ANYTHING.  

Twenty-Six

Well, another anniversary is here.  It's very hard to believe at times that we have been married for twenty-six whole years.  Shoot- when I am not in the throes of the whole Hundred and Four thing- I barely feel like I am old enough to have been married a minute.  I definitely don't feel old enough that in three months I will have a twenty-five year old "child".

In my personal journal last night I mentioned that "events" or "time markers" like today put me in the mood for doing a spider web "game".  You know, when you take one thing in your life and change the decision.  Then you follow the strands out to all of the changes that would be in place because of that one different decision.  It's a very interesting exercise.  It's also fun to re-imagine your whole life in new ways.  That said- there is one thing that I have learned through doing this time and time again.  I have no regrets.  I cannot allow myself to regret anything because to regret my decisions is to regret what came from them.  I almost feel that if I allow myself regret- I am denying the lessons that I have learned from my mistakes and am taking my blessings for granted.  

Would I do everything over again exactly as I did it before?  Probably not EXACTLY.  There are some dumb decisions that, if I were to take a different road would not completely change my life so I might change them, but even those I can laugh about now even if I won't ever share them.  And even those have left behind little blessings.

I love that, despite the mistakes we have made, despite the mistakes we still make (we are the epitome of "The more things change, the more they stay the same) -even after all of these years there are no true regrets. 

Getting Past Feeling A Hundred and Four

One thing I have learned about living with chronic illness is that there are a myriad of reasons and ways that we can feel significantly older than our physical age. Oh, I can generally ease along in a 10 or so year range from my own, sticking with the 40's and 50's for a good long while but with the onset of a bout of insomnia or flare, even a mini one, and then I start feeling older, and older, and older.

 More often than not it starts with the insomnia.  Then comes the extended stiffness that comes with pushing through the tired.  That brings on "new" (or- more) aches and pains which, speaking only for myself, causes me to walk more gingerly or use the affected area less, leading the areas taking the extra brunt to join the "symphony of Ow".  The more achy I become, the more I toss and turn.  The more I toss and turn, the less quality the sleep I am able to get becomes and the more I can feel the tired seeping through the muscles and joints and down deep into the bones.  Of course, the more achy and exhausted that I feel the older I feel.  By the peak, I am well past my 70's, 80's, 90's and into easing into my hundreds.

Just dealing with this cycle for the past, wow, coming up on 7 years now, has taught me that the best thing for me is usually to sleep...A LOT.  Last week I spent more time resting than I have in an age.  It helped quite a bit until last night when once again sleep was elusive.  While I was up in the middle of the night I read an email article from Arthritis Today that discusses a study that found....are you ready for this?  Are you sitting down?  More than 40% of people with Rheumatoid Arthritis DON'T EXERCISE!  Can you tell that this article annoyed the daylights out of me?  They concluded that:

"Unfortunately, there is the widespread myth that people with arthritis need to rest,” says Lee, who believes that some patients still think resting their joints is the best route. “Patients don’t have to meet the CDC guidelines, but they should be as physically active as possible.”

The study also found that inactivity was closely related to two factors: motivation to participate (in other words, whether a person believed he was able to participate in physical activity) and a belief in the benefits of physical activity. People who lacked strong motivation for physical activity, and people who lacked a strong belief in the benefits of exercise were 2.5 to 3 times more likely to be inactive than those who had strong motivation or held strong beliefs."

What floored me was that there is no mention in this "study" that perhaps the reason that we don't exercise is because, well, it flat out hurts!

While I am rather disgusted with this whole article, it does bring up a small point.  I know that when I do push through and keep active, it can slow down that feeling of rapid aging.  Oh- it doesn't stop it, but it does help to get through the days.  Now, I am not saying that I should be taking an aerobics class or out training for a 5k; but a little gentle yoga to stretch out the muscles or walking in the therapy pool at the Y (it's danged cold out!) or even a little dancing can keep me just limber enough to get through the day and give me enough energy to keep my mind engaged when it feels like it should be a fuzzy mess.   The challenge (at least for me) is to gather enough energy to actually get moving when all you feel like doing is hibernating.

Thankfully, physical exercise is not the only way that I can pull myself out of feeling older than my days.  I find that one of the biggest keys for me is to push the positivity.  In fact, when I am extremely worn down, it almost takes mainlining it like a drug.  As I lay there, a puppy on either side of me, I make sure that I have a book, or three,  that will make me happy.  It could be a sweet romance, it could be one of the Chicken Soup books, it could be anything- as long as it makes me smile. I surround myself with pictures of people that I love, and keep my phone close so that I can talk to them.  I keep a pad close by- either my iPad or just a pad of paper and a pencil- and as I think of things I am blessed with, when I think of things I am grateful for, I put the words down; because words have power.  I let myself sleep at will but when I am awake, I absolutely refuse to allow myself to wallow.  I let myself have a bit of a snit and then I tell myself that it's time to Just.  Get.  Over.  It.  I remind myself as many times as it takes to give myself a kick start that while I may not have much control over the physical aspects of living with a chronic illness, I sure as heck can control the effects on my emotions, on my mind.

Before I know it, even though I am still tired and still achy,  I begin to feel more like myself.  At least on the inside.

Sleep or Pain? That is the quandary

Oh the difference a week or two can make.  The insomnia that I have been battling had made me crazy so I thought it time to try and figure out which (if any) of the meds I am on was contributing to it.  I had a feeling that it was the Neurontin, so I started there.  The first two days with out taking it at night (still doing the morning- not totally stupid) there was no change.  By the third night, I started to sleep.  I mean really sleep.  First four hours without interruption, then six, then two actual eight hour nights.  BINGO!  We have a winner.

Unfortunately- it came with a price.  By this Monday night I went to sleep around 11pm and though I woke to my alarms at 4:30 and 5:15- at which time I gave an out loud "Oh thank you GOD that it's Tuesday and I can sleep longer because I close tonight"- I finally crawled out of bed at 8am.  Note the word CRAWLED.  I may have been sleeping, but the pain and stiffness are back with a vengeance. To the point that it took over four hours yesterday from the time that  I got up to get my hands to be able to fist.  My hands, my wrists, my elbows and my hips all had that lovely gnawing pain that we with Rheumatoid Arthritis know so well all day long.  My lower back?  Started out aching and by the time I got home from work last night it was screaming.  I heated up a frozen pizza because I was not feeling up to cooking and as soon as I took the puppies for their somewhat-abbreviated-walk; I went up to my room, flipped on the television because Glee (which makes me SO happy-natch) was coming on, put on my jammies and tried to get comfortable. After almost two hours of trying to find a position that would alleviate the pain enough to bring sleep, I gave in and took the Neurontin.  

It kicked in fairly quickly, again with much gratitude on my part, and I was able to start drifting off by about 10:30.  At 12:30 I was wide awake.  I had been having MAD crazy dreams and woke up with one of those "What the H-E-double hockey sticks" thoughts going through my head.  I looked at the clock and promptly laid back down to try to go back to sleep.  Eyes wide open, I gave up after 30 minutes and got out of bed.  We are now creeping toward 5:30am, I have had the better part of a pot of coffee, watched a bunch of stuff off of my DVR , stretched through yoga, and am just starting to get tired again.  Of course we are just past the time that my second alarm goes off for the day so there is no going back to bed for me and it's going to be a long, long, long day.  I am feeling thankful that it's almost time for my morning dose because the stiffness and pain are making their way back despite having stretched and I want to head it off at the pass as much as possible.

This is my quandary.  My next appointment with my Rheumatologist is on the 17th.  I don't know which would be worse- the continued insomnia or the ramping up pain.  I will most definitely have to decide before tonight because the decision will come down to whether or not I take the Neurontin again before bed.  I am open to any suggestions that you may have that would help me get comfy enough to get to sleep without taking the Neurontin.  

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!  

It's beginning to feel a lot like Christmas

     I did something very out of character for me last weekend.  I went "power shopping".  My normal approach to Christmas shopping is to begin very early (like....July?) and buy a little as I see things that call out to me as being right for a specific person- or to build myself a theme and craft gifts around that theme.  This year I bought my older nieces and middle nephew something just after my birthday in July, decided on a craft project and searched for materials for months until I was able to complete that and then sort of crapped out.

      My son asked for cash - he had a fairly large expense and wanted help with it so that was easy, but for everyone else I waited until I had my budget in one lump sum.  Last Saturday I intentionally slept in-well, woke up at the normal time then went back for a nap by 7:30-but I got some extra rest.  Then I woke up, downed more coffee and left the house by myself before 10am with the intention of not going home until I was done.  To complicate matters- (if you remember) I resolved not to shop at Target, Walmart, Best Buy, ToysRUs- any of the retailers who opened for Black Friday either on Thanksgiving night or before 6am on Friday.  That made it a little more challenging but I was committed.  Well, by 4pm, all I had left was to stop at the dollar store to pick up holiday "tupperware" type containers for a portion of my craft project that needs to be separate.  I made that last stop and when it was done it was as if a weight had lifted.  I was tired, my muscles and joints were rebelling but I was satisfied with the work I had done.  I took my time, I stopped for coffee on my way out and then for a protein smoothie half way through and really paced myself so I could get through it all in one fell swoop.

     Another difference this year is wrapping.  Gift bags have been my strategy in all of the years I have had RA and can be such a boon for us.  The other thing I have done is to order online and have it shipped directly but my sister-in-law protested to wrapping all the gifts as they came in.  So I decided that I would wrap- rather than using gift bags at least for the things I had to ship.  I bought some cute paper for the kids and elegant paper for the grown ups and set to wrapping on Sunday morning.  One thing I picked up was a little "cutter" for the wrapping paper.  I cannot cut a straight line with scissors-and I am the first to admit it- and with my lack of hand control it ends up choppy anyway. Plus- you KNOW it hurts to use scissors after a while.  Of course, after using this nifty little tool I realized that a coupon cutter would be just as effective.  I put my television on and started clearing out the DVR and got into a groove.  I would wrap a couple of things, stop for a break to rest my wrists and hands and then go back to it.  Just before 3pm I had everything that needed to be shipped wrapped up and in paper grocery bags so I hopped in my car, went to work, boxed them all up and prepped them for shipping on Monday morning.  I managed to get back just in time to watch the Patriot's game (yay football!).  While I was putting together dinner I evaluated my hands and feet.  I had been standing the whole time to wrap because I learned from my Rottie (who would instantly lay on the wrapping paper as soon as I opened it to cut) years ago that sitting on the floor wouldn't work with two curious dogs.  I also knew that sitting on the floor would cause me to lean over more which would stress my already painful back so I was using my dining room table.  Once dinner was going (home made beef/veggie/noodle soup) I decided to leave the gift bags upstairs in storage and keep on wrapping.

       Well, I didn't finish until Monday night but when I was done I felt like the chick in this year's Target "Done" commercial.  I danced around my table doing the "Done, Done---Done-Done-DONE" dance. :-D.  All I have left to do now is to pack my clothes tonight, pack for the puppies tomorrow night and then load two boxes full of gifts (and 5 copper pipes- a part of my craft gift- thanks to @Riotkat for the idea) and all of our bags into the truck on Friday afternoon and head to my folks for the holiday weekend.  I love this.  I don't feel at all rushed, I managed to actually wrap all but the gifts for 2 "people" (one was a full gift bag for the pups- who just won't care and the other was my best friend for whom I used decorated gift boxes).  I even wrapped Mom's gift for Dad (can't tell you what it is in case Dad reads this but I am pretty excited!) even though, ironically enough,  I talked to Dad on one of my breaks and he said "you are worn out from work- don't wrap anything- just throw it in grocery bags, none of us will mind!"  I even took my hubby's gifts to work and did a stealth job on his since he always figures out what I got him.  It makes me so crazy that I was this|close to covering the whole wrapped gift in shipping tape so he couldn't peek.

The nice thing is that feeling this well prepared is that I can focus more on all of the work things I need to get done before we close on Friday for the long weekend.  I am also not second guessing myself- which I do when I buy all year long-wondering if I forgot someone on my list, if I bought enough, if I am taking the easy way out by using gift bags- all of those things that stress me out about the holiday season.  That is the key word right there- STRESS- and for the first time in a long time I just don't feel it in terms of the holiday.

I hope you all have a wonderful Hanukkah, Christmas, Kwanzaa, Yule or whatever holiday that you choose to celebrate this season.  Next up- deciding what I want to do with my new year!  See you next week!  

Taking on a little TOO much.

The other morning, while I was getting ready for work, my Auggie went a little bat-shit crazy to get out the door.  I mean pawing at my slider (which he never does- he leaves that for Harley)and barking up a storm.  I popped back into the room and let him out on his runner.  I wasn't half way back to the bathroom to finish my makeup when he started going a little nuts outside.  That brought Harley running and she wanted out too.  I let her out to join him and again the barking started so I went out to see what in the world was up.  Now- we have had an opossum hanging around the house for a while and I figured they were going nuts about it again.  S/he "hides" under the neighbor's lawn chair in plain site but just out of reach and it makes my pups crazy.  Little did I know.

I walked outside and what do I see?  Five beautiful, majestic does wandering through the back yard.  These were not baby deer, these were fully grown, almost as tall as me, deer.  My little 22lb dog was barking furiously at small herd of deer that had to have weighed 200lbs each.  He was very lucky.  The "lead" doe just looked at him with some amusement and led her group down through our 20 yard "wooded" area that separates us from the neighbors behind us, into their yard and on their way.  They weren't remotely frightened of my brave little guy who was defending his territory (or his sister who was half-heartedly joining in his noise or of me for that matter), in fact they sauntered along as if there was not a care in their world.  For this I am thankful because he really could have been hurt.  As they walked out of sight, the three of us came back inside- Auggie and Harley for a treat and me to finish my makeup.

While I was applying my eyeliner and mascara I was ruminating on how brave my little fur-babies were when it comes to keeping critters out of their territory.  They routinely chase off rabbits and squirrels and that stinking possum but this incident gave me pause.  It made me wonder how often we let our courage take it a little too far.  I know that when I am looking at pallets of books that need to be opened, received and shelved I have a tendancy to face that mountain and tell myself that failure is not an option and dive right in without thought of the consequences.  This time of year, when our kids are selling back their books and returning their rentals and they all seem to get there at once; I will stand at window working with those books  for hours at a time until my hands start to swell and cramp, my elbow starts to holler at me and I over work my wrist so much that I lose the strength and it hurts to try to open a bottle of water.  I don't look at that line and think "it's too much, I can't do this all day".  I look at it and think "I can bang out this line, no problem".  It tends to get me into trouble physically and that in turn makes me a little bummed about the changes in my body and also makes me feel far older than I am.  I also think that this is what makes me a Tigger.

I believe I have mentioned this before, perhaps when discussing my tattoos but I love reading "The Tao of Pooh" by Benjamin Hoff.  It is an easy to read and easy to process introduction to Taoism.  In reading this, the part about Tigger really spoke to me.  The book says:

"A fish can't whistle and neither can I." There's nothing wrong with not being able to whistle, especially if you're a fish. But there can be lots of things wrong with blindly trying to do what you aren't designed for. Unfortunately, some people aren't so wise, and end up causing big trouble for themselves and others. The wise know their limitations; the foolish do not. To demonstrate what we mean, we can think of no one better than Tigger, who doesn't know his limitations ('Tiggers' can do everything'), which brings him in lots of trouble.


If don't know if there is a better description of me anywhere.  I know better but tend to blindly jump in and try to do it all and then kick myself later when my body rebels.  When I am going at some big, demanding project with no thought of how I will pay later it is just like my little guy trying to scare off those big and beautiful deer that were 10 times his size.  It's foolish and can have dire consequences.  More importantly, I know better and yet it still doesn't stop me from trying.  As I sit here this morning with my fingers taking longer than usual to "unkink", my shoulder throbbing,  my wrists aching and knowing I still have a lot of work to do both at my job and in preparation for Christmas which is coming at us at light speed, I can tell that I need to slow down a bit if I am to get it all done.  I just don't know if I can slow down at this time of year.  My stress level is already bumping at the ceiling and I have a feeling that if I try to back off a even a little bit the stress may bust through the roof and send me into a tail-spin. I think that after the holidays (ending with MLK Day in mid-January) I will have to step back and evaluate how I could have done things differently and still reach the goal of getting it all done on time.  At the moment I am just too far into the eye of the hurricane to be able to be objective and so I will have to finish along this path and hope that I don't send myself into a major flare by the New Year.  There are only 11 days till Christmas and 5 weeks until we are through our "rush".  The countdown has begun.

Going to make it a great week!

Phew!  I didn't feel like last week would end.  I spent 2 days in catch up mode, then 2.5 working in my "warehouse" receiving in boxes of books.  By Friday afternoon (after my dumb fall on Friday morning) I was hurting all over and left a little early.  Not that I hadn't put in my hours- I worked open to close on Tuesday and late on Wednesday and Thursday so I hit my hours but still felt guilty leaving with so much to do.  So- I woke up Saturday morning (okay- after 2.5 hours of sleep) and made a list of things I needed to get done at work and went in for a solid 6 hours.  I did my system backup, sent my list of books that are left to buy to my wholesaler to see if they had any used, then unpacked and checked in 3 pallets of books.  By the time I left work I was so sore that walking hurt and so exhausted that I came home, was in bed for a "nap" by 4pm, didn't wake until 9pm, was back in bed before 11pm and didn't wake until almost 7.  I am thinking that between the insomnia and the physical work everything caught up to me and I was done for.  Thankfully, Jim recognized that and let me sleep while he took the puppies out for their walk and fended for himself for dinner.  I could have gone in again yesterday- but it was time to say "no mas" and re-charge before this week.

I have been wanting to go to The Christmas Tree Shop.  We don't have them around my area and I used to LOVE going in there to see kind of neat stuff they have on sale.  If you have one near you and haven't been, I highly recommend it.  We decided yesterday, since we were both off and had nothing planned, to take a little trip up north to go there.  The closest one for us is about 3 miles outside Cincinnati so it took about an hour and 20 minutes to get there.  We shopped and wandered around and I was able to get 9 gifts out of the way.  Between yesterday's trip up north and the items I have already bought , that leaves only 2 to finish ( I am making blankets for my nephews) and 5 people to buy for.  That's a big relief.  We considered, briefly, going to the Cincinnati Zoo but it was raining out and we considered heading to the Newport Aquarium but with Christmas coming TOO fast, it was a little on the spendy side so instead we went out to lunch and then started back.  The bonus- for me- of the whole trip was that they have REAL Dunkin Donuts up there so we stopped and I bought a half a dozen bagels.  Their onion bagels are the best I have ever had and I just love them.  When we were on our way back, I was playing with Facebook on my iPhone and saw a post from the shelter that we got Harley and Auggie from that said they were in desperate need of certain supplies.  So we pulled off an exit, found a Dollar General (not to be confused with Dollar Tree or the Dollar Store where everything is a dollar- this place is just rounded to full dollars-confusing, no?)  and picked up 20lbs of cat litter,  and 8 pack of paper towels and 2 gallons of bleach and dropped it off on our way home.  Jim, as always, wanted to see the puppies and there was the sweetest little guy there who is the same mix (pekingese/cocker spaniel) as our Auggie.  Fortunately, someone has already applied to give him a forever home or I would have had a hard time getting Jim out of there without him.  We got home, Jim took a nap, I loved up on my babies and then made some dinner.  Needless to say it was a productive and relaxing day for us.

Today it's back to work for another long week.  We have to get the rest of the books out and on the shelf and then reconcile them to our orders.  Once that is complete- I will be able to stop and breathe.  I have decided that no matter what happens- this will be a good week.  I read a terrific quote yesterday that will do my best to apply to the whole week and it goes like this:

“Having more joy does not necessarily require a life overhaul—you may just need to create more space in your life for moments of joy.”—  Debrena Jackson Gandy

I have decided that for this week I will stop focusing on the "big picture" and look for those moments of joy. When I find them,  I will capture them, give thanks for them and keep them.  If I do that- there is no way the week can be bad.  

It's going to be a long weekend

There's nothing like, when you are already in chronic pain, injuring yourself on top of it.  I don't mean the tendency that I fight to not overdo it, I mean the accidents that happen that just add insult to injury.

Insomnia and marriage don't always mix well.  If I were single or if Hubby worked 3rd shift, I would wake up and turn on the TV in my bedroom or flip on the light and read a book, but that isn't possible when the person sleeping next to you has to be up bright and early to work.  Instead I get up and make my way downstairs so as to not wake the man and usually our Auggie hops off the bed and follows me while Harley-girl stays upstairs as long as she can snoozing.  Yesterday morning I got up and went to leave the room, turned around to get my glasses and tripped over Harley.  She had evidently decided to join Auggie and I for a change.  She yelped and I jumped then quickly picked her up and gave her some loving.  We often carry her downstairs because she is a little timid since she fell down the stairs a few years ago on her own.  So we started down the stairs and when I was about 3 from the bottom, I missed a step and down we went.  I held onto her until I hit the floor and she panicked and twisted away which means she dropped to the floor from about a foot up.  As I let go of her I flailed out my arm and smashed it on the corner of the wall separating the stairs from the living room.  I was sitting on the floor, holding my hand with my other hand, trying to check on her without moving too much because my hip and butt were screaming from hitting three stairs and the floor.  Hubby holler down to check on  me (nothing like waking him up when the intention was not to) and I wasn't too sure if I would be getting up from that spot and Auggie was jumping all over me as if he was checking me out to see if I was okay.  In the meantime, Harley had shuffled off to her crate to hibernate.  My biggest fear was not for me, but that I had caused her to hurt her back again.  I got up on all fours and crawled over and half into her crate and did a full body check before pulling myself up and making my way to the kitchen to start my coffee.  When the hubby came downstairs he checked on Miss Harley and got her to come out so she could go outside and do her business and at that time she was walking a little hunched over- as was I.  We looked like two little old ladies. After she made her sojourn outdoors, she came back in and went directly to her crate and pillow, not even waiting for a treat.  By the time I left for work she was back to sleep and snoring.

I worked until about 1pm.  By that time, my everything was stiffening up and I couldn't sling boxes any longer, plus I wanted to check on Harley.  I came home and she was up in her daddy's recliner, happy as a clam.  I, on the other hand, debated whether or not to make my way back upstairs or try to nap on the couch.  Fortunately, I chose up because apparently my phone started blowing up within 20 minutes of going to sleep.  I slept for a couple of hours and by the time I woke up bruises were evident on my hand, my rear end, my toes (I have a feeling 1 or two are sprained or broken) and a bit on my back and beyond that, my hip was hurting.  I wasn't allowed to wallow though because we had to be at Whole Foods before 7 to get a particular Christmas gift so I took a Tramadol and off we went.

By the time I tried to go to bed the first time, I was feeling pretty beat up.  It took until midnight for my regular meds to kick in so I could relax but eventually they.  I tried to get comfortable enough to sleep but that only lasted 2 hours before I was up again, stiff and sore.  I have to go into work today and I almost wish that it had not been unreasonable to go in when I woke up at 2:30 because I would have gotten a lot more done then than I will later.  I am already fading so I think a nap will be in order as soon as I get home.  Sunday we are driving up to Florence, KY (just outside of Cinci) to get some more Christmas gifts and then-hopefully it will be nap time again.

The lesson from this?  No more carrying dogs down the stairs.