Time To Kick Out Of This Rut

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What is happening to us?

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

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

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

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

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

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

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

Back to Reality

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

• We will be visiting 3 different fundraising haunted houses for well known truly haunted locations (Waverly Hills Sanatorium, Baxter Ave Morgue, Culbertson Mansion)
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• We are going to the movies (Pitch Perfect- hubby has no interest)
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• We are going to eat good food ( I have been scouring Pinterest for days)
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• We will visit a LOT.  
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• But the biggest thing we have planned is...we are going ZIP LINING!  

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

Contemplating a quote and making changes

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

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

- Esther Hicks, best-selling author and speaker. 

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

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

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

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

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

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

Waging a battle

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

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


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

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

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

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

Thanks for baring with me while I work through this!

J

What can I learn from a hard lesson?

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

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

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

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

30 Things You May Not Know About My Invisible Illness

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

1. The illness I live with is:

Rheumatoid Arthritis and Fibromyalgia

2. I was diagnosed with it in the year:
RA in Augusts, 2005, Fibro in 2008-ish

3. But I had symptoms since:
Early 2005 on all counts

4. The biggest adjustment I’ve had to make is:
Limiting myself in terms of how much I can do in a day.  Chronic fatigue is a very real part of living with both of these illnesses and it's an evil cycle.  The more tired you get, the more pronounced the pain.  Pain in turn saps your energy.  Ten years ago I was go-go-go constantly, now, not so much.  

5. Most people assume:
A LOT of different things but the two biggest are:  A- Rheumatoid Arthritis is just like its very common cousin Osteo-Arthritis.  I cannot tell you how many times I have heard "Oh! I have arthritis in my _____________!  It's not so bad.  You should just___________!"  and B- I have a significant amount of medication related weight gain.  Long term medications like Prednisone and biologics can do that.  People assume that I am "just" getting "fat".  If it were as easy as diet and exercise- years of Weight Watchers would have helped me lose.  

6. The hardest part about mornings are:
Gathering enough energy and flexibility to get ready and go to work.  Most days just drinking coffee and throwing on something comfortable and then making lunch is all I can manage.  Especially since I have to wait for the flexibility in my hands to prep my fruits and veggies and in my knees and hips to get back upstairs to my clothes and such.  

7. My favorite medical TV show is:
I don't watch medical shows but if I see an ad for an interesting episode of Dr. Oz, I will DVR it.  

8. A gadget I couldn’t live without is:
My iPad. It keeps me connected to the world no matter how I am feeling.  When I have the energy I can write and interact, when I am sick I can watch Netflix or a movie.  Lisa answered similarly and she is SO right.  

9. The hardest part about nights are:
Getting comfortable and staying comfortable so that I can sleep a full night.  

10. Each day I take __ pills & vitamins. (No comments, please)
2-3 Tramadol, 2 Neurontin, 3 Flexeril, 1 Lunesta, 2 Tums, and 2 Vitamin E and a multi- so; 13 different pills and vitamins.  Plus my Orencia injections every Sunday.  

11. Regarding alternative treatments I:
I would love to try accupuncture- and my doc is okay with it, but there are no practitioners in my area who are on my health plan.  

12. If I had to choose between an invisible illness or visible I would choose:
Invisible. I don't handle pity well.  

13. Regarding working and career:
I never thought I would see the day when I was ready to give up work- EVER, but now I can see that in my not so distant future and it no longer scares me.  

14. People would be surprised to know:
Again, parts of Lisa's answer were perfect so I will borrow on hers:  How much pain I am in and how many parts of my body do not work all that well.  Many people assume because I do what I do, I must not be in that much pain. I am blessed I am not worse, but after 7 years of RA, I have never experienced a day of remission and every day I want to go to bed and stay there, but I never do. My brain is wired to keep on keeping on. 

15. The hardest thing to accept about my new reality has been:
Any limitations.  I am not good at limiting myself in any way and have a tendency to overdo it by just pushing a little further . 

16. Something I never thought I could do with my illness that I did was:

Accept and work with my illness.  When I was first diagnosed I felt like I had been handed a death sentence.  

17. The commercials about my illness:
Make me crazy.  They are completely misleading.  Though medications can help to slow down the illness, everyone in the RA community knows that there is no cure.  Let me repeat that:  There. Is. NO. Cure.  No matter what Phil Mickelson says or what the commercials show some actor doing- you will likely never see me able to walk 18 holes of golf carrying a golf bag or running on a beach.  I am lucky if I am able to bend over and tie my shoes without it taking half of forever to do the task and then get back up.   Also- no matter how well a specific treatment works for one person- it won't work for many more.  I have been through ALL of the DMARDS and most of the biologics.  Methotrexate worked wonders until it started damaging my liver.  Then it was back on the search again to find something that would work again.  

18. Something I really miss doing since I was diagnosed is:
Walk around the Zoo, a museum or any other place where there are stairs or hills without the assistance of a cane.  

19. It was really hard to have to give up:
Pretty much everything that requires that second burst of energy.  Things like, working all day and then going out with my hubby or friends.  After working all day, I just want to curl up and rest.  

20. A new hobby I have taken up since my diagnosis is:
Seek and find games to keep my brain active.  

21. If I could have one day of feeling normal again I would:
I don't like this question.  One thing that I have learned is that we gain a new " normal" and accepting that is a big step in not allowing our illness to consume us.  

22. My illness has taught me:
Gratitude.  I can be grateful for all of the supportive people in my life and all of the things I am still able to do.  

23. Want to know a secret? One thing people say that gets under my skin is:
"You would feel better if you just exercised more."  and "OH- my grandmother had arthritis in her_____"  

24. But I love it when people:
Truly want to learn about RA and Fibro rather than making assumptions about it from what they see on TV.  

25. My favorite motto, scripture, quote that gets me through tough times is:

"Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend. "  Melody Beattie

26. When someone is diagnosed I’d like to tell them:
Do not listen to someone else's idea of where your illness will lead you.  If I listened to my first Rheumatologist I would be in a wheelchair right this moment.  You can make your own reality.  The important thing is to go through the stages of grief and then decide what you want out of your life and go for it.  Finally- DO NOT let everything you read online affect you.  You will find that some folks allow  their illness to be the only focus in their lives- that does not have to happen to you.  

27. Something that has surprised me about living with an illness is:
How much a positive attitude can affect your illness and how you live with it.  

28. The nicest thing someone did for me when I wasn’t feeling well was:
Built me a "nest" in my bedroom so I didn't have to leave if I didn't feel like it.  

29. I’m involved with Invisible Illness Week because:
It's so important that people understand that just because we look "okay" doesn't mean that we are.  Day to day, hour to hour how we feel can change and the more people that understand that, the more acceptance there will be.  

30. The fact that you read this list makes me feel:
Grateful that you care and would take the time to understand what changes my life has undergone.  

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

Hurtling toward the end of the tunnel.

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

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

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

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

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

Sometimes it's just too much

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

• This time of year my calendar is packed.  I look at it each day to see where I am and I am overwhelmed.  
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• I am not- by ANY stretch of the imagination- a good housekeeper.  My poor mother probably wonders who raised me.  I look at all of the things that truly need to be done around here and I am overwhelmed.  
• 
  
• I have a million and five things that need to be done at work before school starts in just two weeks.  Just thinking about all of the little details makes me feel overwhelmed.  

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

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

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

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

He made me cry...in a good way

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

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

Josh being silly at the China section of Epcot

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

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

Rebounding from burnout.

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

- Dr. Seuss

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

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

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

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

Spinning out of control.

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

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

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

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

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

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

Karma Cleanse

I saw this on Pinterest and really liked it so I wanted to share:

Who are you really?

This past weekend I went and got my hair colored.  It's fairly dramatic.  I went a few shades darker all over with pretty blonde highlights sprinkled throughout.  I have been thinking of doing this for a long time but fear of any hairdresser not being MY hairdresser (I miss my Jody!) has held me back.  Finally I decided that; to heck with it- if I didn't like it, there are a thousand boxes at the local Target that I could throw on there and change it up again.  When Krista (the stylist) turned me around in my chair at the end of the appointment I just sighed and smiled.  It was exactly what I had envisioned. It looks like, well, what I have felt like for quite some time.  It just feels right.  After years of varying shades of blonde- which was perfect for that time in my life, this now feels like me.  Do you know that feeling?

My slight transformation started me thinking about the changes I have made in my life to get to this "new" place.  Gradual changes made over the years have brought me to a new place far more than contracting (do you really contract these illnesses?) Rheumatoid Arthritis and Fibromyalgia.  The conclusion that I have come to is that I have reached a place where, while of course the daily nagging pain and the stiffness that creeps in while I am sedentary (not to mention the pill collection O_o) are reminders that I have these illnesses, I think about it it far less than I have in years before.  I have finally, again gradually, reached the point that RA and Fibro are just a background factor like the color of my eyes or my distinct lack of height.  They are things that I cannot change, they just "are".  I have often said over the years since I got past the initial diagnosis that these illnesses are just a part of the overall me- but now I feel like they have truly taken a back seat to the rest of my life.

My point?  Well, I am not "the woman with RA".  There is so much more to me.

I am Josh's Mom.
I am Harley and Auggie's Mom.
I am Jim's wife.
I am a daughter.
I am a sister.
I am a friend.

I am a hard worker
I am loyal
I am dependable
I am honest
I am loving

I like reality tv
I like scary movies
I like magazines

I love books
I love cooking
I love the hot days
I love spending time with family
I love to write
I love naps

I dream of traveling around the world.
I dream of breaking the NY Times 100 bestsellers
I dream of having a housekeeper
I dream of doing the million things I would like to do (yoga classes, volunteering, giving big gifts to my 5 favorite causes, learning to meditate and more)
I dream of going to school perpetually
I dream of winning the lottery to finance my dreams

I am interested in self improvement
I am interested in the Paranormal (specifically Ghosts- not cryptozoology)
I am interested in crafts
I am interested in DIY projects
I am interested in trying new things

I do not like house work (see the dreams above).
I do not like extreme heights.
I do not like spiders
I do not like ignorance or bigotry
I do not like traffic or waiting in lines

See- there is far more to me than my illnesses.  How about you?  Putting aside your challenges- who are you really?

Good news/Bad news

For me- not for anyone else.  The good news is, after 12 days I finally feel human again.  Bronchitis/sinusitis hit me this time- and hard.  But thanks to antibiotics and a lot of rest, I am well on the mend.

The bad news- after 8 days with no cigarettes at all- I picked them back up again.  I cannot believe the struggle that this is.  When I was sick- I didn't miss them at all.  As soon as I started feeling better- It was all I could think about.  So- I have re-started the Livestrong program and am working on quitting again.  The goal is to be done with this-for good- by my birthday next month.

In the mean time- I will tell myself this- over and over and over:

  

Contributors wanted

I have been vacillating back and forth about how I wanted to write my next book.  The first was really my story and was very personal to me.  In thinking about the next one, I realized that I don't want to do the same thing over again.  That would be "How to Bore Readers 101" .  I started really looking at the options and made a discovery.

I want to relate a true story at the beginning of each chapter and then expand on the "lesson" to tie it in with how we can live well with a chronic illness.  What I DON'T want is to tell just my stories at the beginning of each chapter.  I mean, really?  No one wants to hear all about me.  Personally, the myriad of experiences is what draws me to books like the "Chicken Soup" series and the Readers Digest series.  Plus- as you and I both know- every one's story, every one's experience with their illness, is different.  If I have a variety of people contribute it creates a greater chance that a reader might recognize themselves in the narrative.  And that is one of the big reasons that I write, so that maybe, just maybe someone will read my book or blog and see something that they can relate to and helps them in some way.

So, I am scrapping what I have written thus far and and starting over.  The first step is to narrow down the topics or chapters that I want to include, and then to gather stories that will fit within those chapters.  In the meantime- I am going to throw this out there- would any of you like to contribute a story for the next book?  You would obviously be given credit and your bio along with any website info included as well.  There's no monetary pay- last year's book sales netted me a whopping $144, but your story may speak to someone out there who needs to know that they are not alone.  If you are interested- either leave a comment here or email me at Chronicallypositive@gmail.com

Have a terrific Thursday!

Under the Weather

Sorry gang- I am not ignoring you, I promise.  I have been fighting illness for over a week and finally caved and went to the doctor on Saturday.  A sinus infection and bronchitis.    As soon as I am feeling even remotely better, I shall return.  

Stay well!  

"Get into the solution"

"Get out of the problem, get into the solution."  Trace Adkins via Stephen Baldwin

Trace goes on to say; "It's a perfect way to put it and a good way to look at things.  Get out of what caused this situation to be the way it is and just start focusing on what's going to make it better and where to go from here, and not waste your time and energy and thinking (on something) that you can't do nothing about" (Country Weekly Magazine, August 22, 2012)

This just spoke to me this morning.  I was so tired and cranky when I woke up. I worked a lot of hours last week at my regular job.  I then administered the SATs bright and early Saturday morning and then packed up the dogs and drove to my folks right after(which was my highlight).  Sunday, Auggie and Harley got out of the gate at their house.  Harley didn't make it farther than the front of the house but Auggie took off running and I ended up walking, calling and whistling for him, around the subdivision while Dad drove around looking for him for an hour or so before *thankfully* one of the neighbors called the number on his tag and we got him back.   Yesterday morning I worked an event down there, went back to Mom and Dad's, gathered the dogs, driving back home last night just worn out.  Today is my "late day" at work, meaning I close tonight so I should have been able to sleep in but was up with the chickens.  I dragged myself out of bed this morning and looked around and can see a million things to do around the house.  It just made me want to crawl back in bed and stay there for the day or maybe the week.

While I was curled up, watching some of this weekend's DVR, waiting for my coffee and meds to kick in I  read this article.  Trace was talking about the fire that took his home (as a result they have moved into their "country home" that he has been working on for years) which is exponentially larger than anything that I am going through, but it just resonated.  

There's nothing I can do about last week and how tired I am.  There's nothing I can do about how the housework has piled up.  There's nothing I do can do about getting out of bed when I should have just rolled over and tried to get a little more rest.  There IS something I can do about how I go forward.

First, I can take a deep breath and get ready to face my week.  Getting it all out here helps.

 Second, I can make it a point to do a little bit of housework every day this week.  Besides a TON of laundry to fold (which I can bang out tonight in an hour or so) the most of the issue is clutter.  I have got to let go of some "stuff" and organize the rest. I think I will give Flylady a shot again.  Last time the emails where too overwhelming but I really need to get this done.  I know that if/when I get caught up, I will be good to go- I just need to get into a routine.

Finally- that magic word I just threw out there- routine.  I know that with my medical issues I need to be in a routine or my energy will be completely sapped.  So when, like tomorrow, I have to break my routine ( I have another event that will keep me out of the house till 10pm or so) I have to rearrange my my schedule so I can make up for the down time.  I can't keep trying to run on all cylinders- I just don't have them any longer to run on and I know better than that.

I know what the problems are- now to focus on the solutions.