Wednesday, October 19, 2016

Perfectionism, Long Journeys and Chronic Illness

     I admit it.  I am a bit of a perfectionist.  I come by it naturally and I don't fight it.  I say a bit because it applies to some areas ( work, for example) but not so much in some (ugh- housework) and I am okay with that.  Here's the problem.  This gratitude journey is a never-ending journey.  Much like any big change it takes time.  Much like quitting smoking or weight loss, living a grateful life has included slip-ups and backsliding.

     The current political climate in our country has created a LOT of backsliding for me.  I struggle so much with trying to find a bright side when we are bombarded from every angle with vitriol.  From the candidates to regular, everyday people that you thought you knew the name-calling, the disdain, the disrespect just grows every single day.  I am astonished at the number of people I have "hidden" on social media over their rants and hateful posts.  I haven't yet blocked all of them (though I have blocked quite a few) because I *hope* that after the election things will settle down a bit and they will go back to the normal people that I associated with before the primaries.  I have already cast my ballot because I will be traveling that day so I can divorce myself from the whole thing a bit but I will be so grateful when November comes so we can stop the attacks but I do fear that no matter the outcome of the election, the political coverage won't stop because the candidates will contest.    At this rate, I truly fear for my country.  I am afraid that we won't be able to come back from the hate and division.  I just hope that I am wrong.  

     I am also working with my PT to try to shed some of this very excessive weight.  Even if I work the program perfectly it too will be a very, very long journey.  In addition to the large amount of weight I have to get rid of, chronic illness doesn't make it any easier.  Working out feels near impossible.  No matter how motivated I am in my brain- my body says "exhaustion".  Between the normal job, haunting three nights a week and the puppies, finding time to even read a book where I am not ready to fall asleep is difficult.  I only have 7 "performances" left at the haunted house so that will end soon but then we ramp up at the store again.  It's a never-ending cycle.  That said- I love my little two-month acting job and can't-at the moment- imagine giving it up.  The creative outlet is refreshing, the improv is fun, and the cast and crew are amazingly talented. The customers can be taxing, but when they are really into it- it works like magic.

    Unfortunately, the failures, the slipping back into old habits, just kills the perfectionist in me.   I beat myself up on a regular basis about it.  Beating myself up just makes the attitude of gratitude harder to achieve.  So I struggle.  But I keep going- because when you live with pain, exhaustion, being ill all of the time- that's all you can do.  Keep going, keep trying, keep on doing your best- even if it's not perfection.


Saturday, August 27, 2016

Oh Quit Your Griping Already! aka- Get Out of Your Own Head

     Have you ever had those moments when you get tired of thinking "My back hurts. My hips hurt. My hands hurt. My (insert your body part here) hurts.  I am tired. I am so tired, I am SO tired, I am SO TIRED!"  This has been what's been rolling around in my brain for the last few months.  The other thought that keeps bouncing around while I was working more hours than I should and lifting, pulling, standing, walking more than I should was "I just don't know how much longer I can keep going like this."  Now that I have reached the end of the tunnel, I can see clearly that I was so very deep inside my own head and it wasn't a good place to be.  It was bringing me down to where I was letting myself be consumed by my

      I try very hard not to be "that person."  You know the one.  That person in your life who is ALWAYS miserable.  The one who is never happy, never feels good, is always complaining about something.   I also know that when I get where I have been for the last month or so with several mini-flares and the usual back to school killer schedule that even if I try to keep my complaints out of the light, I slip more than I would like and the people around me have to hear me.  Who wants to spend time with that person?  I know I don't so I tend to avoid them but when it's yourself- there is no hiding from it.

     Here's the thing.  You know, I know, everyone knows that I am never going to feel "well" so complaining about it won't do any good.  I don't want pity.  I really kind of despise the thought. A little sympathy can go a long way but there's a very, very fine line because I don't want to be felt sorry for and I don't want to be held up as the example of how "it could always be worse".  Being that example is horrible!   Understanding would be nice, but unless you are living with it you can't really get it.  Even another RA/Fibro/DDD/RLD patient can't truly understand because each case is unique.  No two cases present the same way and no two people handle their pain, malaise and fatigue the same way.  We don't fight our illness the same way and we don't cope with the effects the same way so we can't truly understand what's inside one another's experience.  So all of that being said, complaining only puts the spotlight on my illnesses.  These are the things I think to kick my butt out of my funk in it's beginning stages but this time I was on the go that I didn't give myself that kick and it spiraled.

     What keeps me going through the downward vortex is this:  I know I am capable of more than I should be. My consistently sky high RF levels and ESR should have me fairly incapacitated but I keep going.  I know that the flares are fleeting.  I know that while today I may not feel like walking to the bathroom, tomorrow I may feel up to conquering the world.  The only thing holding me back is me.  It's not my body, it's my brain.  Even when my body is rebelling, if I don't let it get to me, if I don't verbalize my complaints- I can fight my way through.  I also know that when I let the complaints flow, the worse I feel.  It's as if acknowledging the pain and fatigue magnifies them.  It's not good and I need to put a stop to it RIGHT NOW.  So how to do that?

Well- this weekend I get to take time to relax. Before I go back to work on Monday I need to use the time to get out of my own head and back to a good place.  I got to spend yesterday with my middle sister Heather and her daughter Lauren which was a treat.  Tomorrow we get to go to see Lauren race for the first time since she began her MX career as a little, tiny, 4 year old.   Now she's all grown up and a professional racer and she's racing up by Indy for the first time so we get to see her in her element.  That will be a joy. We have followed her through photos, video and live stream for so long but live will be so special for us.  Today is all about giving myself a recuperation day.  Today I have absolutely nothing on my plate other than running a quick errand.  I already rode my exercise bike for a just over a mile this morning and enjoyed a pot of coffee.   I am going to go run my errand when I finish this and then come home and nap with the puppies.  Oh yes- the puppies.  Now that they are getting used to one another, they are pretty sweet most of the time.  And they are great napping companions.  After my nap I am going to curl up with some tea or Matcha and FINALLY read Harry Potter and the Cursed Child.  I might even throw in a facial and a tub.  Tomorrow Jim has to be at a meeting early so I will fold laundry in the guest room and then pack up to go see Lauren race.  One of "my kids" from work is going to puppy sit so we don't have to worry about crating the little one while we are gone for the day and we don't have to worry about coming home to a mess.  Then tomorrow night I will get my lunches and snacks planned for the week and clothes laid out so I can head to the PT on Monday morning bright and shiny then back to work.  I am hoping that by getting back on schedule, by getting back to my routine I can get out of my head and back to "normal".  Hopefully, by the time the weekend is over I will be mentally out of complaint mode and back to being more productive.  That's the plan at least.

In closing- I leave you with puppies!  Auggie, of course, is on the left and Fenway, the new addition, is on the right.

This is what I come home to at night.  They bring me joy even during their growing pains and  my craziness.  

Enjoy your weekend my friends~ I plan to do the same.  

Saturday, August 20, 2016


I. Am. Exhausted.  The husband brought home a new puppy on Monday.  I would like to phrase it less harshly but to say that his timing just plain sucks is appropriate. It's my Rush period so naturally I am working my face off.  Very long hours, running around like a crazy person and by the end of the day I just want to curl up and go to sleep.  My body is currently coming out of one flare and heading back into another so that's taking its toll as well. The end is in sight for work-craziness but the puppy (named Fenway) is a whole different story.

She's a 9 week old boxer/lab mix and cute as can be.  She's a snuggler and a kisser so you really can't get mad at her but she's still a baby.  That means that on top of everything at work and some family stuff that's going on I am working on housebreaking and crate-training.  We are up to almost 2 hours of sleep at a time at night which is somewhat great but since hubby works 3rd shift it falls to me to get up every couple of hours and take her outside then get her back to sleep.  I know he was thinking that if we waited she would be gone but there are moments I want to string him up by his toes and keep him there except to do puppy duty.

It's my own fault in a way.  I opened the door for this and he blasted through. Since we lost Harley last November I haven't been up to thinking about another dog.  On the other hand, Auggie misses Harley and is much less animated since she passed and Jim has been saying all along that he needed a friend.    A few weeks ago we went to a pet store to get some stuff and they were hosting an adoption event.  When we were there I agreed to apply to adopt a 6 month old boxer puppy.  I said that if it was meant to be we would get her- but we didn't because someone else got an application in before us and I thought nothing more of it until he showed me a picture of this one on Sunday.  I agreed the she was cute and then went on to a different subject.  Monday while he was out running errands he detoured to the shelter and adopted her, bringing her to the store to meet/surprise me.  As soon as he put her in my arms- it was all over.  She snuggled into my neck and I was done for.

So that's the adventure in my life now.  Wish me luck on potty-training!  It's an arduous journey!

Sunday, July 24, 2016

Happy Sunday Random Roundup Friends!

I don't know about where you live but it's HOT here in Kentuckiana.  We've had days upon days of 90's and humidity with no end in sight.  For the most part- I just love it.  The only disadvantages are that my extremities swell and my hair just doesn't behave due to the humidity.  On the other hand, the heat is marvelous for my joints.  I don't know for sure if it's the Actmra or the heat but my stiffness in the morning is down to about an hour before I am "normal".  In winter it can be up to 3 hours.

 Outside does make a difference, even though we keep it at a steady 72 inside year round.  When it's hot out I love to spend time out in the sun.  If you are my age, I am sure you remember spending time in the summer, laying out on a towel in the yard with baby oil slathered all over you and Sun-In in your hair.  We all wanted our hair light and our skin dark.  It makes me smile just to think about it.  Now I get as much sun as I can in May, June, July and August.  September I start letting the tan fade in preparation for haunt season.  After all- the darker I am, the more makeup I need to look "dead".

Speaking of haunt season, I am ready early this year.  My costumes have been cleaned, my basket full of makeup and accessories has been restocked and packed and I am already working on my intro for the season.  I have also been working with some of the other actors on things that worked and didn't from last season that we can share with new cast members this coming season.  Last season was drama-free for the most part and we had really good kids.  I hope beyond all hope that this season will be the same or better.  One weight is off my shoulders.  There was a review group that has come through every season and many of us actors were really concerned with how we would rank.  Well, over the off-season their "head guys" showed their colors after the Orlando tragedy by posting some horribly homophobic statements and then getting really nasty when called on it.  I don't tolerate that in my life and I don't respect anyone who can't respect others so, though I doubt they will be allowed in ANY of the haunts in our area this season, if they do make it in I really don't care what they think of our haunt or my performance.

On a happier note, we went out running yesterday and saw a puppy that was just adorable.  She's a boxer/bulldog mix. We have been thinking long and hard of getting Auggie a companion.  His personality has become very toned down since we lost Harley last November and it's been long enough that I am ready to bring another dog into our world.  Jim was all for it immediately but I needed time to mourn that sweet little girl first.  Of course I have my fears.  Can we really get lucky enough to get another dog as sweet as those two?  What happens if my health goes downhill?  Fortunately we have a decent sized yard for them to run in and Jim swears he can handle two of them so there's that.  OTOH- Mom and Dad don't think we need another dog.  I get it because Auggie travels with us and they have already made his reservation (just his, not any of the other Grand-dogs) for our next family reunion but we know that if we do get another dog we will either have to board both or hire someone to stay at the house with them because, like with Harley and Auggie, we wouldn't split them up.  And NEED is a strong word.  But I fully believe in rescuing dogs.  Given the time, ability and unlimited funds I would rescue as many as possible. I can see myself as the "Crazy Dog Lady" in another life.  Given my physical limitations *When* we win the lottery we will donate to as many rescues as we can.  The mission is so important.   Dogs really are better than people.  They love unconditionally and if you treat them well they are loyal to the end of the earth.  Their hearts are pure.  I truly believe that there are very few bad dogs- but many more bad owners.  I have to commend people who can foster- I couldn't because I would want to keep them all.  I know my limitations and letting them go, even to a great home, is one of mine.  It would break my heart and I just couldn't do it.

Now to bring things down a bit.  I am SO over all of the political posts and divisive social commentary on social media.  I will say over and over until I die that I don't care WHO you vote for as long as you get out there and vote.  That said,  these elections have become so contentious that it's making me physically ill.  If I could get a message to everyone who comments on every thread or news article or meme or posts on Facebook, Twitter, Tumblr, Reddit, it would be this:  if  you cannot get your message across without calling names, you message is not that important.  As soon as I see rudeness or name calling, I shut down.  I don't care if you are talking to one another or talking about the candidate or about the parties or about ideologies, if you can't be respectful, if you can't make your point without being hateful, your point is moot.  I don't even discuss who I am voting for.  It's between me and the polls.  That said, I look at every issue.  I also look at how the campaign is run, who they surround themselves with and where they stand on healthcare, government oversight, military matters, and jobs leaving the country.  I worry about racial tension, I worry about the separation of church and state, and I worry about foreign relations.  The great thing about being a registered Independent is that there is no "straight party" voting and that I can choose who I think will be best for our country, our state, our city without feeling I need to stay within party lines.  I hope, hope, hope that when you look at the candidates, you can feel free to make your decision with as much openness in your heart and mind as well.  Additionally I have watched the different "Lives Matter" (Black, Blue, All) movements with a heavy heart.  I truly believe that they are doing nothing to advance their causes but just causing further divide.  I understand the concept and why people feel their need.  What I don't understand is why, in 2016, ANYONE is still looking at people as a skin color, a religion, a job, a sexual orientation or a gender identity.  We are more than each of those things.  We are people.  We have hearts and souls.

 What has made me truly sad is that I have found out a lot that is not pretty about people that I thought I knew.  I am thankful that, there's an UNFOLLOW button on Faceobook, but I am sad that I need to use it.  I have unfollowed a lot of people because though I care about them, I just don't want the ugliness cluttering my news feed.  I won't cut them out of my life because they do mean something to me and I believe that deep inside there is more to them than that, but I don't want to see that part of them.   Please know, if you are posting hateful or rude thing, you are still there, I just don't see you on my regular news feed any longer.

Part of trying to live from a place of gratitude is to cut the negativity out of your life.  For me, that means losing the toxicity of this political season.  It means ignoring the rhetoric of the movements and accepting people for their merits.  I have gotten very far off track in my search for gratitude and I think it's because the negativity from many directions is all consuming.   I think it's time for a self-imposed social media and news drought in my life.  It's time to take a break for the good of my own soul.  I will keep my messenger up to keep up with my family and I can be reached there or here but I need a break from the rest for a while.  I hope you have a beautiful Sunday, free of strife and negativity.  I am thankful that you are reading my musings and for all of your support.

Monday, July 18, 2016

I Am NOT My Illnesses

There's an ad out right now, I think for a Psoriasis drug, that says "See ME".  I see many people who allow themselves to be defined by one aspect of their lives be it illness or one thing (marriage, parenthood, work?) that they don't see beyond.  I cannot, WILL not, allow that to happen to me.

I am a wife.
I am a mother.
I am a daughter.
I am a sister.
I am a friend.
I am a writer.
I am an employer.
I am an employee.
I am right-handed.
I am brown-eyed.
I am of undefined hair color.
I am a tom-boy.
I am a diva.
I am an actress.
I am a reader.
I am Spiritual.
I am loyal.
I am hardworking.
I am dependable.
I am adventurous.
I am open minded.
I am complicated.
I am an observer.
I am easily irritated by bad grammar, bad spelling, bad driving.
I am a political Independent.
I am a Moderate.
I am quick-tempered about the little things but get over it equally quickly.
I am slow to really hurt/anger but when you push me too far, you are out of my life forever.
I am a geek.
I am a Pop-Culture addict.
I am not happy with my weight.
I am happy with who I am.

I believe that people are who they show you they are rather than who they say they are.
I believe that animals are better "people" than people at times.
I believe that common sense and common decency have become not-so-common.
I believe that being respectful does not hurt.
I believe that being kind also does not hurt.
I believe that not my job to "convert" you, nor your job to "convert" me.
I believe that getting to know one another as people is the way to finding peace.
I believe that hate is an all-consuming a waste of energy.

I believe that the words "Politically Correct" should be stricken from the lexicon.  Respect for our differences is not a bad thing.

I believe that people say things behind a keyboard that they wouldn't dare say face-to-face, and that often shows true colors.

I believe that if you are living your life your way and not hurting anyone, you should just live your life without repercussions.  Best put:  "Do what you will, so long as you harm none."

I believe that if it's not yours, don't take it; if you didn't earn it, don't take it; if it doesn't belong to you, don't break it.  If you do, you are a criminal and should be punished.

I believe that guns are for hunting for food, not people.  If you kill it, you eat it.  If you hunt for sport or if you kill another person, you have earned swift punishment.

I believe that personal responsibility and accountability are of the utmost importance for ALL.

I believe that our country has, in my lifetime, lost its way and I fear that, in my lifetime, it won't find it again.

I believe that we citizens at heart are the way to heal, we just have to take action to make it happen.

I don't see skin color.
I don't see religion.
I don't see sexuality.
I don't see gender identity.
I don't see disabilities.

I do see how you treat people.
I do see how you speak to people.
I do see how you conduct yourself when you think no one is looking.

This is a lot about me- but did you notice that none of it is even remotely about the illnesses I live with?  I am NOT Rheumatoid Arthritis.  I am NOT Fibromyalgia, I am NOT DDD, I am not RLD.  They may shape what I can do from day to day but they are not my life.  There's so much more to me that has nothing to do with any of those illnesses.  Pain, exhaustion and the associated symptoms may slow me down but they are not who I am.  It's my hope that you too make a list and see yourself, warts and all, beyond what plagues you.

Tuesday, June 28, 2016

Time For Another Business Trip

   I am off to Cleveland again this morning.  Though I am dreading the 6 hour drive I am very much looking forward to spending time with "my girls".  We are very fortunate that we have some good people in our group and specifically, that the girls at IU East and IU Northwest and I (IU Southeast) really like one another and enjoy spending our limited time together.  I can't imagine how tough it would be if we didn't get along.  We all have to drive in a day early due to the length of the drive.   I will leave here in about an hour, get there around 3 (which is check-in time) and have time to take a nap before the girls get in around 6.   Two of us room together and  so I will know when they get in and we will meet up, go to dinner and catch up before we start the meeting in the morning with the rest of the region.  We will do meetings all day and evening tomorrow and all day Thursday and then make the long drive home.  I am grateful that I get to see the girls and we do this together since we are too far apart to spend regular time together.

By the time I get home my back (and possibly hips) will HATE me- but I will have the weekend to lay on the couch and recover.  My DDD and RA aren't crazy about turn-around trips but when I go to Tennessee I can rest in-between,  When we have our meetings it's essentially "Forced Family Fun" from 7am to 10 or 11pm every day.  We are in chairs all day, then spend dinner and the evening together.  This time it's a team-building exercise.   Fortunately, when  I make it home I will have a puppy waiting for me who will snuggle up and love on me as long as I need.  Unfortunately, I won't see the husband until Friday because he will be at work by the time I get home.  It's a trade off I will take because he is really liking working for Lowes.  I am grateful for King Pup.  He makes me look forward to coming home and makes my recovery a bit more palpable.
In terms of my work- my second Summer session started yesterday.  That means that in a week or so we will rope off that section and offer counter service only while we prepare for Fall.  This summer is FLYING by in terms of prep-time,  I need to look at my calendar and figure out when I will devote a weekend to walking, shifting and re-setting my shelves.  I have done very well (if I do say so myself) in letting go of much of my textbook duties and giving them to my Assistant, even though they are my wheel-house, my comfort zone, my "baby" so to speak.  As it's my first big season without having control- I have to do a walk-through and adjustment.  I can't just assume all is well because I am the one who will have to be the one who answers for any issues in the end.  Such is the fun of being "the boss."  I am grateful that I am free to rearrange my schedule so that I can do big tasks like this when we are closed and at my own pace.

Well, I must finish subtly packing.  Auggie loses it when he realizes I am leaving and so I have to pack bit-by bit.  The suitcase is closed, I am just finishing my backpack.  I just have to let my work iPad charge as much as I can before heading out.  Then, I will convince the dog he needs to go outside (Bunny chasing perhaps?) and take the luggage out the front door. At the moment he is snoozing at my feet under my desk, so this may be tough.

Have a lovely, lovely week!

Wednesday, June 22, 2016

Peppermint Tea, Ginger and Flexibility

     As good as I thought Monday started out, it quickly devolved.  Shortly after I hit "Publish" on my post, I started to feel ill.  When I say ill, I mean ILL.  Over the last two days I have dealt with the effects of what we think was less than stellar seafood on Sunday night.  It was ugly.  We have narrowed it down to that because hubby was affected too- but he only ate a little of it and he was less affected.

    Monday at work I was....out of the office (I am sure you get my meaning) as much as I was in.  I think most of the 8800 steps on my Fitbit were earned running back and forth to the ladies room.  This continued all night to the point that I barely slept.  Yesterday morning I sent a text to my Assistant Manager asking her to cover my close as the issue was ongoing.  She graciously said yes and I crawled into my recliner and didn't move unless necessary for the day.

    Because of all of the meds I am on I prefer not to treat with medication when possible.  With previous damage to my liver (thanks MTX!) I am so afraid to take anything that affects that area. Thankfully I had a box of Twining's Peppermint Tea K-cups for my Keurig on hand.  Peppermint is a great soother for your stomach and it helped a lot.  I also keep Gin-Gins on hand all of the time because I just love them but Ginger also helps settle your stomach.  So these two became my saviors. I discovered the hard way that caffeine was a huge trigger.  I thought I was getting low on the Peppermint tea so I made a cup of green tea (less caffeine than coffee but still has it in it) and added mint from my garden and nearly undid the progress.   But, I found another box (YAY) that I had stashed away and in the meantime I switch to water in an infuser filled with fresh mint.  

     This morning I am feeling human again but I am taking all of those things with me *just in case* eating solid food sets me off again and I am stopping for flowers for my Assistant Manager who covered me yesterday and my Full-time bookseller.  They are both so good about covering the store when I am not doing well- be it illness or a flare- and I just want to show them that I appreciate it.  It's a small token but it's something I can do.  It's a total blessing that I have people at work who are flexible about changing their hours so that I can tend to my "stuff" and not worry about my job.  I am also grateful that I have sick time every year and that I have not had to max it out in any year as of yet.  I am often told "USE IT! You only get to carry over so much!" but I am always so afraid that the big flare will come and I will need it that I only use it sparingly.  I would rather lose the hours that I can't carry over than need it.

I hope you have a LOVELY Wednesday.  Give thanks today for any small thing that you can find- it makes even a rough situation a little better!