Grumbling, Grumbling

It's almost 9am and I have already done enough grumbling this morning for a week.  First I was grumbling because Auggie woke me up FAR too early (considering that we were up late watching the tube last night) and then wanted in and out, in and out.  Some would say just leave him out- but I don't want him barking and waking the neighbors at 4-5-6-7 am on a Sunday. And he knows it- so as soon as he gets ready to come in he gives a single bark.

Then it was sorting my pills for the week.  It's not a huge deal- it's just tedious and my pill week starts on Sunday so before I can take them I have to sort them- plus it's shot week (I am on Actmera every other week) so that means paying that bill and I am almost out of Prilosec and have to pick that up along with another RX today.  I don't know about you, but I am rather over buying meds and having so many that they have to be sorted and life revolving around taking them.  RA. Fibro, DDD, RLD- somehow I think that with that laundry list, the med regimen won't be lessened very soon.

Then it was paying the bills.  You know, I know- they are a fact of life.  Today was the mortgage, car insurance, cable, cell bill, electric, gas, water, trash/sewer, etc.  It's almost soul crushing.  You work hard all month long and with one 20 minute session at the PC and with the checkbook- it's gone.

Lack of sleep, tedious and dreaded tasks to start the morning and it all culminated in:

Grumble-Grumble-Grumble-Grumble-Grumble-Grumble-Grumble-Grumble-Grumble-Grumble

Then- I got over myself.  I literally stopped dead in the kitchen from pulling my shot out of the fridge and said out loud "Oh ENOUGH already!"  I just don't want to let this go on and grow and ruin my Sunday.

So I came back into my office and made a plan.  I am going to finish my pot of coffee.  I am going to make my meal plan for the week.  I am going to take my shower.  I am going to go to the gym and hit the treadmill.  I am going to go get my manicure done and then go to the grocery.  Then I am going to come home, get my clothes ready for the week, fold some laundry  and start gathering the stuff that I need to pack for my trip to my annual meeting a week from Tuesday.  Then practice walking in my heels again before I get back in my jammies and snuggle in for my evening of Fairy Tales (Once Upon A Time) and Zombies (The Walking Dead/Talking Dead) and try to relax before another busy week.

I have to take this opportunity of today to take the things I was grouchy about this morning and turn them to gratitude.

  I am SO thankful that I have that silly dog.  He gives me so much joy and makes me laugh so often and knows when I am not doing well and will stay by my side endlessly until I feel better that I have to "excuse" the pain-in-the-butt moments.  I also have to be thankful that I am able to get up and down and up and down to let him in an out when he's wanting to run.

I have to remind myself that I am truly grateful that we have the medications that keep me able to be productive.  As much as I hate taking my pills and shots and stuff- I know, because I wait in pain for them to kick in every single morning, that without them my quality of life would be incredibly diminished.  I have to, have to, have to take them and be thankful that not only do I have them, but I can afford them.  Without them, I would not be able to work.  Without them, there would be more days than there are that I am not able to leave my bed, much less my house.  Without them, there would be no way that I would be heading to the gym in a bit to walk on the treadmill.

Finally I have to be grateful that I CAN work and pay those bills.  As often as I say "I just want to win the lottery and retire", until that happens, those bills that I was grumbling about paying this morning will come every month.  It's just a part of life.  I am grateful to have that mortgage, and that my parents helped to make that happen. I am grateful for the cars when for so many years we didn't have one and that we can afford the insurance that goes along with it.  I am grateful for the lights, the heat, the cable that keeps me entertained and more importantly connected to my family and friends across the country.  For the cell phones that are attached to our hands 24/7 and all of the other things I was paying the bills out for this morning as well as the silly things we don't NEED but spend our money on each week.

So that's that.  Change the perspective, change the direction of the day- and tomorrow wake up on the RIGHT side of the day.  :-)  

Pajama Day or Spa Day? That is the question.

     Hey gang!  I have been so, so, SO busy for so long that taking today off to relax feels like playing hooky.  I am not- I promise.  I am planning on a long day Friday as I travel to another store to observe their inventory and then I am opening the store on Saturday for an Open House for prospective students so even though I took off today, I am still at about......47 hours this week.  The problem is that for the last three months I have been working so much that taking a day in the middle of the week is almost illicit.  There's been so much going on (and will continue to be until May 15th) that it's been overwhelming.  Even when I wasn't working my brain has been going in the background working on that next thing.  I almost feel like I haven't been able to breath- and today is that first full-lung breath.

     So what to do today?  First instinct is to stay in my jammies all day and binge on the DVR and just vegetate but I do have one or two errands to do that would negate that a bit.  Not rough errands- I need to drop Jim's suit off at the dry cleaner so it's ready for my sister's wedding and *maybe* run to Meijer to pick up some fruits and veggies.  Because we haven't had many meals together lately I offered to cook for Jim tonight.  He was in the mood for burgers.  Let's be honest- I make decent burgers but I cook other things much better, so I offered to run to Five Guys if I am out since that's his favorite.  Then he can have a burger, a bacon dog and REALLY good fresh fries ready when he walks in the door at 3:45 and will have time to rest before heading to Lowes for his evening shift without me banging around cleaning up the dishes and such.

     The second inclination is to do a home-spa "day".  I have a lot of things like mud masks and nail polish, bubble bath,  facial scrubs and such.  I can pick up a few more things at Meijer and spend the evening taking care of my outside.  I have music, recorded meditations, my favorite Blueberry Matcha, yoga OnDemand, candles and, of course, a puppy to snuggle to nourish my insides.  A few hours of peace sounds really, really good.

  Either way, I can take off my comfy pajamas, toss them in the laundry before I head out, transfer it when I get back and when I am done with my ministrations or just dinner, put on warm pajamas- there's nothing better than warm, just-out-of-the-dryer jammies.  It's like slipping on a hug and who can't use a hug?

Well- I think I am going to finish the show I am watching and then change.  Timing will be everything in making sure I get home in time for dinner with the hubby without being too early or too late.  I am so ready to win the Powerball and retire so I can enjoy days like this at my leisure!

Have a lovely, lovely day!  

My Thunder Buddy and the Event....

Thunder Buddy (for LIFE) had a rough night tonight- and naturally shared with us. We didn't go to bed until late, just after midnight the three of us crawled into bed. Around 12:30 Auggie jumped off the bed for some water and curled up on his own bed. I really don't know what time the storm started probably because we sleep very well during storms but Auggie freaked out and managed to squeeze himself in between the wall and bed and get under the bed. Now- my bed has drawers under it so there's not room to just slide under there.  Every clap of thunder, every flash of lightening brought a bark or two. So up I got with him around 2:30 and tried to get him to come out to the living room with me so he didn't wake Jim as well but he couldn't figure out how  to get back out since technically- there's really not room. It wasn't until about 40 minutes later that Jim woke up enough to help me move the bed to get him out. He was so scared that he actually went out INTO the storm to relieve himself. Shortly thereafter- the boys both went back to sleep- Jim back to bed and Auggie curled up in the chair in my office and I have been cleaning out the DVR and sucking down copious amounts of coffee for the last 3 hours.  Gotta love being a light sleeper who can't get back to bed after being woken.  It worked well when Josh was a baby and needed to be cared for in the middle of the night.  Now that I am getting older- not so much.  

I hope you all got some sleep- and have a lovely Sunday

How Do You Want To Be Remembered?

     This weekend I was reading snippets of Forever, Erma.  Erma Bombeck was a beloved humorist who passed away too soon.  I loved, loved the wit she brought to marriage, parenting, and life in general.  The book is a collection of 200 of her columns.  At the end of this book, the final chapter, is a multitude of tributes from friends, family, fans, colleagues and people whose lives she touched.  It's a lovely, lovely end to the book.  It got me thinking though.  How do I want to be remembered when I pass?

First-let it be known far and wide- I do not want a traditional funeral.  Don't mourn my passing- celebrate my life.  Don't put me on display- take my ashes and scatter them on Granny's (now Kevin's) back 40.  If you want to memorialize me- plant a tree, or two, and place a bench in what will be underneath it/them and then use it as a place to go when you want peace and quiet.  Now that we have the particulars out of the way.....

Overall, I hope that I am remembered as kind, as strong, as stubborn (because we HAVE to be honest) as honest, as loyal and as hardworking.

 I hope my family (blood and chosen) remembers me as loving and as the one who was always there for them when they needed me.

To take it a branch out  further- here's what I hope the many, many kids (most of whom are now grown up) that have worked with me and become part of my extended family remember me simply as the one who always believed in them, even when they didn't and who always has their back- even now.  

That's it.  I think that's how I want to be remembered.  Not for my illness, not for my age, but for how I (hopefully) touched people's lives.

How about you?  

More Changes

Great News!  The hubby started his first day of his new jobs- yes jobS yesterday!  Two days in a row last week he had interviews, one for full-time, one for part-time. The afternoon of the second interview he got the calls that both were offering him positions.  He immediately accepted- both.  I am very proud of him.  He doesn't have to take both, we are surviving on my salary (though) it's tight- but he wants to do so in order to catch up our savings as to what we spent while he was unemployed.  I don't know how long it will last- he is just past his 50th birthday after all- but I salute that he wants to try it out.

 Both are shipping/receiving so that's good.  The full-time position is at a local leather company, the part-time is at Lowes.  My only concern(?) (beyond him working himself sick) is that he will get a discount at Lowes.  Me working in and managing a bookstore is the height of temptation.  Lowes is that for him.  It could be dangerous-lol.  But hey- if he rebuilds our savings and then wants to work to buy "toys" for his man-cave- more power to him.

So- I got up yesterday and this morning and while I was making my breakfast and lunch for work, I made him a lunch  too.  He never eats breakfast and rarely eats lunch but I thought it would be a small gesture of support.  His hours, once he gets into the groove, will be 7:00am to 3:30pm and home for a bit, then 6pm to 11 or 12pm based upon the trucks coming in for the night.  I am already making my meals and it if makes it easier for him to actually eat- it's not a hardship on me.  Dinner for him Monday was pre-prepped from Sunday.  I made a lovely pork roast and veggies and we still have plenty of leftovers so all he had to do was plate and heat so he could have a real meal in between jobs.  Tonight he will eat something like Ravioli or Beefaroni that he only has to pop on the stove and heat.  I just didn't think ahead.

Another good thing about this is that it gives me an "excuse" to do an even better job of planning our meals.  Until my new Assistant Manager starts work(in a few weeks) I am working open to close on Monday, Tuesday and Thursdays so I won't be home with him in between jobs to cook so we will be forced to think ahead- because there is no way he should be working that many hours without a real meal.   This not only will make sure HE eats- but that I stay on track as well.  That can make a huge difference in my efforts to stay on plan.  There is nothing so helpful for me than being mindful.

The only one I am concerned about is Auggie.  It's been months of changes for him.  First we moved into the new house in October and my schedule was flipped because of Haunt season and traveling for work.  In November he lost his sister when we lost Miss Harley.  They had been constant companions since 2009.  Then we went out of town for a plasma draw twice so he was in a hotel room for the weekend.   Then we went on vacation for a week-not to Grandma and Papa's as usual- over Thanksgiving so he was out of his element again. December he got his "Daddy" 24/7 when Jim lost his job and I went solo once to the plasma draw. and now it's January and Jim and I will both be gone all day again.  Add to that Josh, Karyn, Jim's brother and my parents spending time here in such a short time (when only Josh and Karyn had stayed with us over the years) and he's not sure if he's coming or going.  It will be very good for him to get back to a routine because for now he's out of sorts.  I am so thankful that he's a mellow mutt because if he was high maintenance- it would be big trouble.  He's not acting out- instead he's my shadow when I am home until about 10pm and then wants to play.  He's also not coming if we call his name as if he's "pouting".  We can look right at him and he will look at us and turn away.   I am going to have to get him to play earlier so we can get to bed at a reasonable hour.  I am sure he will eventually get back to himself but in the meantime- we will have to work with him.

So that's the new changes in our lives.  Thankfully they are mostly positive and I can be grateful to get back to another new normal.  Have a great day gang! 

My World In This Moment- **Picture Heavy**

Well- *my* football season ended tonight in a close game.  That frees me from sports until April when the Sox start playing.  Tonight (it's Sunday) I thought I would share a few pictures of the house, what I am up to and- naturally- Auggie.  No major post, just things I am grateful for today.  **All pictures taken between October 1st and yesterday.  They are not in order- Blogger is being a bear about moving them to where I want them**

 The House now that it's winter, and just before the snow

Had to include the monster bed.  I feel like The Princess and the Pea when I climb in. 

The Harry Potter collection in my home office: 

Auggie- King of my world: 

 

Just because it's true: 

 We spend MANY hours like this: 

My latest project- Wands for my store's upcoming Harry Potter Book Night: 

 The house while we were moving in- Miss Harley loved the back yard: 

 
 

 

 

 

A lovely glass sculpture from my Mama that is named for the Sisters hangs over the sink: 

Taking care of myself and getting back to cooking/prepping real meals:

Naturally- still Haunting in season: 

JOSH came to visit to help us move- and then went haunting with me.  :-) 

The Ultimate Dinner Party

I am an unabashed Harry Potter Geek.  I have read the books over and over, went to the midnight premiere of each movie and have seen the movies every time I pass them on the television.  The cast is made up of a seemingly terrific group of well-adjusted kids and some of the luminaries of British stage and screen.  So when Alan Rickman passed away last week at the age of 69, I was truly sad.  The tributes, from all of those who had worked with him over the years were so poignant.  I found myself thinking "I would have loved to have met him."

This got me thinking about all of the people that I wish I could sit down and have a conversation with.  Yesterday being Martin Luther King Jr day, I would love to have a sit down with him and see what he thinks of the world we live in today and how much he feels we have progressed- or- regressed- in the years since his passing.  I've heard one version of this called the "Ultimate Dinner Party."  I've heard it done with just those that are still living, only those that are no longer with us, famous people, not-famous people and any combination.  I believe the guideline is 5-10 guests so you can spend time with each.

So I think I will do a bit of both in my journal.  I will do three dinner parties: only live and famous guests, only those who have passed and a "famous only to me" with a combination of both.  Once my lists are made, I will journal why I want these particular guests- and see what I learn about myself in the process.

I challenge you to do the same.  You don't need to post it- just do it.  See what you learn about you!

Have a great week.

The Rush is OVER!

Well, my Rush is over.  I made it through my first rush without my Assistant Manager.  It was grueling and now I am paying for it.  I spent about 6 weeks working no less than 60 hours a week and my body has officially rebelled.  My everything is swollen, my everything hurts.  I expected to bring on an RA flare but this time I even brought on a Fibro flare.  When I saw my Rheumy yesterday I told her "even my skin hurts!".  She was pretty taken back because I rarely complain.  But- she put me on a 12 day dose pack of Prednisone, changed my muscle relaxer and now I just take the next 3 days to rest, relax and recuperate.
I don't love Prednisone but if it makes it so I can put on real shoes again- I will deal with it.

Hubby is still without work.  It's making both of us crazy.  He has turned job hunting into a full time job (as he should) but he's getting very frustrated.  I understand it but he has to understand that he's 50.  He's up against people much younger- and less "expensive" for jobs.  Oh well, what can you do, right?  Just keep plodding along I guess.  I shouldn't say it but I have kind of enjoyed having a "house husband" during my rush.  It took a lot of pressure off of me.  If we could afford it, it would be good for me to have him here full time to keep taking care of the house and all the day to day.

Now- it's time to go back and put my feet up and nap before the Patriot's game today.  I hope you all have a lovely weekend.  

Another Family Visit Coming!

And I am very excited.  Mom and Dad's 50th anniversary is next month and we did a quick "hey can you come for dinner?" shout-out across the country and it looks like both girls will be able to make it.  I think that's the hardest part about being spread across the country.  I know that I can't just drop everything and run out to California, North Carolina or New England for a weekend- no matter how much I wish I could.

I have been planning my trip to California for Heather's wedding in April and I had thought that would be the next time I see the girls- but this trip (both are flying in on Saturday and home on Monday morning) will be an added bonus.  We will grab them at the airport Saturday then run down to Mom and Dad's for dinner and the night, then back to my house on Sunday where we will all stay till I drop them off at the airport on Monday on my way to work.  It's taken quite a bit of scrambling on their parts but I know they really want to be here.

So here is what I say to you this morning......  If you have siblings who live close- take a minute and give thanks!  Next time you see them- give them a big hug.  No matter how crazy they make you, you still have the opportunity to hold them close and spend time with them at will.  For that- I envy you!

Things are looking up- slowly.

    Thus far, 2016 is off to a better start than the last quarter of 2015.

October was good- we moved into the new house and though we are still figuring things out we got mostly settled.  I had another successful haunt season.  I have a new costume this year and was made the "host" of the haunt.  It was very exciting and fun and I am grateful for the trust they put in me to do so.  We had some wonderful new kids this season who did a great job.  I hope they all come back next season.   I also had visits from my son and best friend.  Josh came out to help us move- which was terrific of him- and Karyn made her annual trip out.  Josh not only got to haunt with me- he was even featured in our professional photos!  Karyn got to haunt again too.  I loving bringing my family to meet my haunt family.

There's one of my pro photos

And Josh being "tortured"

Karyn and I prepping for the night

Selfie in character

November, on the other hand, was very rough.  We lost Miss Harley on the first.  Over the course of Halloween weekend she started vomiting and progressively got so sick that by Sunday morning she couldn't lift her head and we rushed her to the vet.  Our vet said that her white-blood cell count was through the roof and her liver and kidneys were shutting down.  It just broke my heart to have to say goodbye to her.  She was about 11 years old and had been with us since we adopted her 7 years ago.  Quiet unless she was bossing her brother around and incredibly sweet, she still has a huge piece of my heart.  Since we lost her, Auggie has become much less animated.  It's been two months and he still looks for her.  I understand that because when I am cutting my fruits and veggies in the morning or making my lunch for work, I still expect her to sidle up for a sliver.  In the morning, Auggie and I get up and he goes outside then comes back in and waits on the mat for his treat.  He then takes the first one in to "her" bed and leaves it there for later and comes back for another which he takes into he living room and eats in my chair.  He's starting to perk up a little but will "disappear" into her bed to nap.  We left it at the bottom of the bed because our new bed is SO tall that sometimes he just doesn't want to be up there all night so he will move down to the bed and sleep there.  They used to cuddle up there together and it seems to comfort him.  We had her body cremated and she's still here with us.  A dear friend (Thank you a million time Danelle Garner!) surprised us with this lovely tribute on the right which sits on the shelf next to her ashes.  We found the little saying at an antique store/flea market in Tennessee and it seemed perfect for the spot.  Jim thinks we should get another pup.  I am just not ready.

I also lost my valued assistant manager to another career in November.  She was young, energetic and super organized.  Pretty much everything that I was before my illnesses set in.  She was a great complement to me but- she wanted to stay in the area and she wanted more, which I understand.  Unfortunately, unless she was willing to wait for me or one of my local colleagues to retire there was no place for her to go.  So, she left to go to work for Cnet.com.  I wish her all the luck in the world but it's been a struggle without her.  Her last day was the 13th of November and we still have not found a good replacement solution.  My full-time employee is up for the position but we fear that if she gets it, they won't let us replace the full-time slot.  There's another candidate but she won't be available until the second week in February if she gets the position so either way, we are going through this rush short handed.  I went on my annual Thanksgiving week vacation with my parents (which was amazing) and since returning I have had exactly 5 days off.  I have been running myself ragged and don't know how much longer I can do it (burn out is rapidly approaching) but the show must go on.  Students need their books, no matter what our staffing situation.  So- we soldier on.

Adding to the stress, in between Thanksgiving and Christmas, the husband lost his job.  Having a new house, new bills that I have never had to pay before (Mortgage, insurance, water, trash) and having the husband lose his job did not make life easier. Oh- and his truck broke down.  I was ready to scrap the damned thing but he needs it to job hunt so we had no choice but to pay major repairs again.   Within two months my stress level rose to Threat-Con Delta.  Fortunately I am back to traveling to Tennessee for plasma draws for research so we had the money to cover all of our needs AND fortunately I had already taken care of Christmas, but it was tight. Needless to say, I was very glad to see the year end and close the book on this chapter of our lives.

So now the new year.  I ended/started the year following all of my usual superstitions for the new year:  money on the window sills by midnight, black-eyed peas and something green to eat on the first, burning a list of the things I want to leave behind on NY Eve- I just have to burn the things I want for the year and send it off into the Universe.  I plan on doing that tonight.  I was going to do it Friday but I thought of a few things to add to the list.

Last Friday, we surprised my husband in a big way.  Jim will be 50 on Monday and his brother, who we haven't seen since their dad passed in 2014,  drove down from MA to spend the weekend with him.  It was an amazing surprise for him.  Drew is going through some stuff too so a little "brother time" is something they both needed.  I am hoping that they were able to have some "manly conversation" and both will be set on the right path.  That was a bright spot to begin the new year.

This Wednesday my sorta-boss is coming down to interview both my FT employee and the candidate from the other store.  That means a decision about an assistant for me is imminent, and no matter which way it goes we will have an answer and be able to plan.

Now we just have to find him a job and all will be right in my world again.  In the meantime- I am trying to find time for "me time".  I am taking Auggie to work with me today so I can spend time with him while I process online orders.  I think after I work today I will drop him at home and then go have a manicure done.  It's a little thing but it feels good to pamper myself.  I also have to find the time now to use the gym membership I bought in December before everything spiraled out of control.  Both should help me find my center so I can get back on my own track.

Now though- it's time to go to work and be productive so I wish you a lovely day.

Happy New Year! Welcome 2016.

It's been a very long time since I wrote on this blog.  It's been a long time since I wrote anything at all.  Looking back at 2015 I only wrote 22 posts all year.  I don't know for sure what it was.  Life getting in the way?  Lack of inspiration?  Lack of discipline?  I think it's deeper down than that.  I feel that I have been in a slump all around.  I have let "life" go by and let my stress and worries keep me from things I love, like writing.  I can't do that this year.  I want to make this a great year.  I want to make this a year of getting back to my quiet pursuits.  I want to find my balance.  So- I have made my resolutions:

     1-  I will take make time for my writing.

     2-  I will make time for reading as many books as possible.

     3-  I will take time to just sit and color.  Side note- if you are like me and artistically challenged- Adult                coloring books are amazing for relaxing!

     4-  I will take time to plan and prep my meals and cook from....semi-homemade.

     5-  I will use these things to manage the stress in my life so that I can get back to a place inside where I               can find my center and look to the bright side.

I have lost sight of that in 2015 and it's time to get back to it.  There's a quote going around by Brad Paisley.  It's my goal to live by it this year:

Here's wishing you and yours a wonderful 2016.  Let's make it a good one together!  

Okay Friends~ I need you!

   Hi Friends~

     As you know, I have a LOT going on in my life at this time of year.  The RA is still acting up, work is crazy and only getting crazier- the usual for my late July/all of August life.  As I mentioned last post, we are also in the process of trying to buy a house.  If we cannot do that, we will need to consider moving to a single level apartment.  Needless to say- my stress level is through the roof.

     Now- I am sure that it will change later this week a little when we meet with the mortgage broker to see if we qualify.  I am honestly prepared for either answer- I just need to know.  Waiting has never been my strong suit and medical test after medical test, diagnosis after diagnosis has made that worse if anything.  But either way- there will be more changes.

      Stress is manifesting itself in hives.  Itchy, itchy hives.  This happened last year too so medically I am prepared to treat it (Benadryl at night, Claritin or Zyrtec during the day and lots of oatmeal baths) so that's a good thing.

     What I need from you are your best ideas and tips.  How do you combat stress?  What do you do to relax?  Send me all of your ideas, good, bad, sane, crazy- I am entertaining all options!

Thanks in advance! 

Feeling Rather Overwhelmed

      So, so, so much is going on that my head is fairly spinning.  Let's see if I can put it in words and make paragraphs that are comprehensible.

     First, the flare is still alive and kicking in my hands and feet full time and moves up the appendages when I am tired.  I have been approved by my insurance company for Actemra for two years, now we just have to coordinate and start that and see if my body stops rebelling.  In the same vein~ nodules are starting to pop up again.  Years ago I had one at the base of several of my fingers and it hurt to drive because it was right where I gripped the steering wheel.  MTX and Enbrel for 6 months or so and they seemed to "melt" away.  Now we know  have them in my lungs- hence Rheumatoid Lung Disease but I have one forming on my right index finger on both sides of the first knuckle.  That means it hits right where I grip a pen.  I was writing the other day and it felt like I was bruised.  I did a "WTH???"  and started exploring and found them.  My handwriting has already gone from decent to like a 10 year old with the joint damage- now I will have to find a new way to grip the pen so it doesn't sit on that knuckle.

I am grateful that my back and neck are in a lull while the flare is active. 

     Second, it's that time of year again.  We are amping up at work for the Fall term.  Right now we are in the process of hiring, then we will start processing online orders, then training the new hires and then it's on.  Next weekend is my last "free" weekend until school starts.  That means I need to spend it planning, planning and more planning.  Planning meals, planning clothing, planning as much as I can so I can make this as smooth and stress free during extended hours and long weekends as possible.  

I am grateful that I have a job that I can enjoy and that I can anticipate the busy times.  

    Third, we are house hunting.  We have been renters our whole married lives.  I kind of thought we would stay here indefinitely but it's just not feasible.  Our apartment is a townhouse style.  It has 17 stairs between floors.  It was really not a big deal until this flare.  My balance being off and the pain of going up and down the stairs has prompted this search. It also doesn't help that Miss Harley can't go down stairs any longer and since I am the first one up in the morning- she gets up when I do and I have to carry her down the stairs.  It's kind of scary.  On top of my dealing with it, my parents are very concerned about me being in a house with stairs- and the last thing I want to do is worry them.  So, we are looking.  We have pulled together a bunch of listings and went to our first Open House today.  Thankfully, Mom and Dad drove up after church and came with us because each of the four of us noticed different things about the house.  The house was a bust but it was a great exercise as to what to look for.  Tomorrow I have to call my bank and get that ball rolling. I emailed their contact number last week.  I will call them tomorrow and if they don't move on the pre-approval fairly quickly, I will go to an outside bank.  Then it's on to contacting a realtor.  We have our parameters and have chosen a company but I have been holding off until we hear from the bank.  it's been a lot of hurry up and wait and looking, looking, looking.  On top of all of this, I am a little anxious about all of the "after expenses"- things we have never had to worry about before like buying a lawnmower, like paying a water bill, sewage, trash collection- things like that.  It's really intimidating.

     I am grateful for parents who care enough to not only worry but to help us and guide us through this process.  I am grateful that we are at a place where we can actually make this step.   

     So that's where we are at the moment.  Even typing it out, my head is spinning but as with everything else~ we will get through this step by step and day by day!

On a side note-  Sending BIG Happy Birthday Wishes to both my Dad and to Miss Dazey!   

RA Inspired Tattoos-

From our friends at Healthline:

Healthline has recently compiled photos of Rheumatoid Arthritis inspired tattoos, and I thought you might want to take a look: http://www.healthline.com/health-slideshow/rheumatoid-arthritis-tattoos

Our readers love looking through this collection and reading the inspirational stories behind each one. 

Enjoy!

Weathering The Storm

     We went to my parent's house this weekend to visit and to celebrate Father's Day.  I drove down Friday evening after work, hubby intended to nap in the car and the pups were happily ensconced in the back seat.  We had been watching the weather all week on both ends as the storm named "Bill" was heading our way and reports varied as to whether it would die down before it reached us, would really slam us or completely miss us.  In the end we decided to chance it.  A little rain wouldn't keep us from seeing my parents.

     The drive is just about 114 miles door to door.  The majority of the ride is straight down I64.  64 is a fairly easy drive, through the Hoosier Forest and past French Lick and Holiday World before we get to Evansville.  The IN/KY exits are numbered based on the mile markers which makes it easy to track where you are going and how far you have left.  We hop on at 121, hop off at 29 on to 69 for a minute and then 57 for a couple and so on.

     When we left Friday, it was still fairly clear.  It was overcast, so no sunglasses needed, but fairly bright out.  It was 5:30 pm and so there was a fair amount of traffic through Corydon and then traffic eased up a bit.  We were driving along at a fair clip thanks to cruise control and suddenly the sky got really dark.  It was just what we would call "dodging raindrops" weather but on the horizon the lightening was just beautiful.  It was so arresting that I tapped the hubby to make sure he was still awake and just said "Whoa".  At about this point we had just passed the exit to MM89 and we began a descent into a brief dip into a "valley"  everything changed.  The fog rolled toward us the lower we went, the skies opened up and the rain was so hard that we couldn't see two cars in front of us.  I wasn't even remotely comfortable going on so I pulled over, put my blinkers on and we waited it out.  Thunder and lightening boomed around us so violently that Auggie jumped up from the back seat into Jim's lap and just snuggled in until it subsided.  He is known as "Thunder Buddy For Life" when storms blow in.  He's just not having it and will burrow as close to you as possible until it's over.  Harley stayed in the back seat just watching it all happen.  Within minutes, almost every car on the road pulled over as well and we were a line of stopped cars with hazards on watching the few hearty souls drive by at about 30mph in the slow lane with their hazards blinking while the big rigs threw sheets of water from their trucks as they sped by at almost normal speeds.  Thunder hit over and over and lightening was striking all around us at a fast rate. For a few minutes it was almost constant.

     I texted my parents to let then know we were delayed. I didn't want them worrying.  Dad was watching the weather and as I picked up the phone to text him, he was sending me a text to see if we were okay.  ***Side note- I have an extreme aversion to texting and driving.  Had we still been moving, Jim would have answered. Please, please don't text and drive.***  He told me that we weren't too far to turn around and go back home but we felt that the storm was moving toward our house so once it subsided enough to safely drive we would forge ahead.  We sat for about 15 minutes until I could once again see the lights clearly turning the upcoming corner and the thunder stopped booming and we were the first to pull out and start moving.  I was happy to see that we were most definitely not alone- we passed literally a mile of cars between those just in front of us and around the corner who had pulled over rather than trying to drive through the storm.  As we drove ahead, we could see the lightening strikes lessening and the sky brightening.  Within 3 miles we were out of the worst of it, no more fog, no more lightening coming at us and  just a bit of rain.  By the 2nd exit we were clear but  could see where the clouds were doing their damage to the left, right and behind us.  When we reached the rest stop, we made a pit stop for a moment and I watched the clouds roll over themselves a asif they were tumbling nd as we got back on the road the sirens began to blare for a tornado warning and we just kept trucking to outrun the county for which the warning was issued.  Soon enough we were at my parents and settled in for the weekend.

     We all know that I have been in the midst of a flare for quite some time now and Saturday morning my parents got to see first hand how my hands were misbehaving.  I couldn't open them completely or close them completely without severe pain and yet 24 hours later, they were much improved.  It was a first hand look at how RA works in my body.

     As I drove home on Sunday in absolutely beautiful weather it occurred to me that the storm I drove through on Friday was very much like living with RA.  Sometimes it eases in, sometimes it comes out of nowhere.  It slams into the body violently and renders you unable to go forward with your life and then relief comes and you can slowly start on your journey again.  The "fun" part is, you never know for sure when and where it will hit again.

     Incidentally- we are in the midst of thunder and lightening (but no rain thus far) again this morning and I am very achy.  Outside, within an hour heading toward us there was over 1100 lightening strikes which was fascinating to track.  Inside, hands and wrists are throbbing but they are mobile (and there is a puppy burrowed up against my legs as I type this) but it's not so bad that I can't go to work and go about my day. The storm is moving quickly and will be gone before the morning commute so all will be well.  Inside, I will fill my pill case, get my meds on and all will be sufficient.

      Tomorrow I head to Cleveland, 5.5 hours away, for meetings for work.  In order to head off another physical "storm" I am driving up a day early, doing meetings Wednesday and Thursday, driving home on Thursday night and taking Friday to recover.  I can't guarantee it won't make things worse, but I will do my best to try to give my body time to rest and recoup as needed.

     Have a lovely week folks- and if you need a daily dose of peace and serenity- my dad has mastered gratitude so check out his blog Notes From the Sunporch.  It makes me smile every day.  

Finding Time and Ways to Relax

     When you are plagued with chronic illness; be it the host of chronic pain illnesses that I live with, or something like Crohn's, Depression, IBS, PTSD, any other chronic disease or even if you are a major Type A (or High D on the DISC styles), the best thing you can give yourself  is the time and a way to unwind.

     Now I know (being both a Type A and a workaholic) that that is easier said than done.  There are times that I have to actually schedule in my down time.  The thing is- it's imperative that you give your body and your mind time to quiet and recharge.  No matter who you are you can only go so long before your body rebels.  I experienced that countless times pre-diagnosis when I was burning the candle at both ends.  I would go and go and go until I just couldn't go any further.  You know, and I know, that there comes the point when you can FEEL that you aren't at your best, so rather than wait for that to happen, taking time to destress can make a world of difference.

     There are the "usual" ways to relax;  take a few minutes to watch the sun rise or set, take a walk, (if you are like me) spend some time with your puppies, spend some time with your children just doing what they want to do, read a book, take an exercise class, go for a bike ride, take in a movie, etc.  I am sure you have heard them all.  So what else can you do if these aren't working for you or just aren't your cup of tea?  Here are a few low to no cost things that I have on my list:

• Do a round of yoga at home.  If you have cable, OnDemand often has a yoga video or two.  Personally, I prefer this series from YouTube that I can fire up on my iPad, lay it on the floor and follow along.             
• If she is not to your liking, there are hundreds of beginners videos on Youtube for you to choose from.   
• Re-watch your favorite movie.  Pull out that DVD, pop some popcorn and sit back and enjoy.  I don't think you want to know how many times I have seen the 8 movies in the Harry Potter series, ;-) 
• 
  
• Turn off all of your devices.  I know- BLASPHEMY! One thing that always stops me from truly relaxing is hearing the "ping" or "ding" or different assigned noises from my iPhone, my iPad, my PC.  Even if you try to ignore it, in the back of your mind you are wondering "Who was that?  What am I missing?"  Even if you put them on silent, you can hear the vibrations so it doesn't really help.  In order to eliminate feeling like you should be checking to see what's come in you really must turn them all off. 
• While you are device free, give yourself a home "spa" treatment.  A soaking bath with or without bubbles, a facial/body scrub made of brown sugar and honey to treat your skin, a manicure, a pedicure, soak your aching feet in hot water and epsom salts; pamper yourself! 
• Dance your heart out.  It doesn't matter that you are at home, if you are alone let loose.  If the kids are at home make it a dance party, they will love it!  Whatever you do, just fire up the music and go.  
• My current favorite way to relax is to COLOR!  I have less than zero artistic talent but I can color all day.  Do you remember just laying on the floor and coloring when you were a kid? This is my current project:
  
    Barnes & Noble has a plethora of coloring books for adults which you can see here.  Crayola also has us in mind-they have sets of crayons that are twistable mechanical pencils.  The books start at $6.99 in store (ALWAYS support your stores if you can get there) and the Crayons run $7.99 to $10.99 depending on where you get them.  You can also find some really cool downloadable coloring pages online- just search Coloring Pages for Adults on Google.  I can color for hours and block out everything but which shade I will use next.  
• Take a warm beverage into a quiet room and just sip it.  Don't do anything, I mean NOTHING until you finish your beverage.  I am a coffee girl throughout the day but when I want to relax I choose something different.  Lipton and Bigelow have wonderful herbal (caffeine free) teas.  I like the Peach, Blueberry and Superfruit. I add a little raw, local honey and close the door to my bed room.  My current favorite beverage is AOI Tea Company's Blueberry Matcha.  It's subtley sweet- I don't add anything and you can make it with milk or water.  It is truly divine.  I keep a serving of the powder at work for those afternoons when you just need something.  I shut my office door for 15 minutes and just enjoy the matcha. 

       That's a few ideas from me.  How about you?  Do you have inexpensive ways that you relax? Whatever you do today- give yourself some down time.  Stop, breathe and do something just for you.  

     

I am A Medical Failure? #Fail

     Ten years (in August) I have been diagnosed with RA.  I have been through all of the traditional drugs to treat my RA.  At my last appointment with my Rheumatologist I requested, we went over the pros and cons and we ultimately decided to, take me off of my Orencia.  It was just not doing anything for me.  I have been stable for so long that I can FEEL when there is a difference and there just wasn't one.  That's a lot of money to be throwing away for no result.

    I saw my doctor on Friday.  She looked at the still flaring hands and feet and said that it was time to start again.  She looked at my record.  She listed the LONG list of meds that I have gone through and that have failed.  She looked me directly in the eye and said "We have exactly 2 options left. Actemra and Xeljanz, everything else has either failed, and the one other drug we have left is Remicade and that has to be taken with Methotrexate so we have to rule that out."  We went on to discuss the two options- both are different pathways, both are home given rather than infusion.  One is a shot, one is a pill.  Dr. Chase said that given the choice, she would go with Actemra only because it's been around longer so there's been more time to find out any side effects.  I trust her, so that's the way we went.  But let's face it- either/or: one fails and we move to the next one and then that's it.  We will be out of options unless something great comes down the pike.

     For a moment, when she outlined where we are and what my options are, I just wanted to cry.  I felt hopeless, like a giant failure.  I know, I know.  It's nothing to do with me-it's my particular RA.  It just took me from the moment she said that until I got home to get to that point.  I responded beautifully to Methotrexate and would still be on it had it not begun attacking my liver.  That is what bothers me the most.  Most of the rest of the drugs were okay at first but then just stopped working.  Some, I never even felt a difference.

     As for the pain meds- I am already on SO much from my perspective.  Pain meds, anti-inflammatories, Postheraptic neuralgia meds and muscle relaxers- plus Lasix for the constant water retention/swelling.  From here we would have to go to narcotics and I am just not ready to do it.  I don't want them.  It's bad enough that I have to carry a case when I travel just for my meds, it's bad enough that I have to take a plethora of pills morning, noon and night.  It's bad enough that I have enough "fog" from the Fibro and RA that I lose my words.  I am not adding the haze of a narcotic on top of it.

     Today I call Actemra and set up their lovely co-pay card (thank goodness for these!) and then talk to my pharmacy about sending the first 3 months worth of shots.  We shall see what happens but hopefully, this one will be "The One".  I am figuratively crossing my fingers for it.  

SO Frustrated.

WARNING- This will be rant-ish

Read at your own risk.

     
      I think I do pretty well with staying positive and finding the good in everything, including my illnesses.  Oh- I have my days but overall I handle the pain, the stiffness and even the exhaustion without letting it bring me down.  That said, I find myself increasingly frustrated with this latest flare.

     I wrote about the onset of the flare a few posts ago.  It was a particularly nasty one.  I think that I have been stable for so long that it took me by surprise.  I know that for each of us who live with these illnesses our "normal", our "stable", is personal.  No two cases of RA/Fibro/DDD are the same.  Our commonality is pain, stiffness and diagnosis- the rest is different.  For me, my stable is pain and stiffness in the morning, waves of exhaustion around 2pm and difficulty sleeping at night.  The pain starts at around a 5-6 in the morning and levels off to a 3-4 for the rest of the day.  The stiffness subsides enough to function within 2 hours but throughout the rest of the day if I sit too long, stand on my feet to long etc, I get up and move around stiff as a board for a few minutes.  I have also begun having my lower joints (feet, ankles, knees) swell enough and stay that way enough that Lasix is part of my daily regimine.  The length, strength and duration of the pain and stiffness ebbs and flows but it's pretty predictible and usually tops off at a 7 (especially my back)- hence, stable.

     Knowing what to expect and being able to handle it is how I can remain positive.  One of the first changes to my life when I received my first diagnosis was the appreciation for routine.  Pre-RA I thrived on never knowing what would come next each day, post-RA I thrive on routine.  Pre-RA I planned my schedule months in advance to control the chaos but I lived for the long hours, the unpredicability of my work and home life, the drama of being surrounded by a diverse cross-section of people.  Post-RA I can't plan my life so much because I don't know from one day to the next what I will be up for, my circle is much, much smaller and having a routine helps me cope with the darker side of being chronically ill.

    Part of my current frustration comes from the way this particular flare is hit or miss now that I am nearing (hopefully) the end of it.  Most of it has subsided and has eased back to normal, but it keeps popping up here and there, letting me know it's still everywhere.  Just when I think the majority of it is gone, it sneaks in and surprises me.  Wednesday night I worked an event.  I knew the flare was coming back because as I lay in bed I could feel the skin stretch as my feet swelled.  It's such an odd an unsettling feeling.  I can't describe what if feels like to lay there and have you knees and ankles throb and your feet burn while the skin widens as it accomodates the swelling.  Thursday morning my feet, ankles and knees were so swollen and sore that I couldn't even fit them properly inside my husband's crocs to take the dogs outside.  When Harley got herself stuck by wrapping her leash around the table that is outside I had to take it VERY slowly to get out and "rescue" her because the soles of my feet were so tender that it was painful to walk across the patio.  It felt like I was walking across a firepit laced with glass.  I got her unstuck and got the three of us inside then sat with my feet up as I drank my coffee and waited for my morning meds to kick in.  By the time I had to get ready and leave for work, I probably should have used my cane but I couldn't- and that brings me to the biggest part of my frustration.

     My hands and wrists have not subsided much at all.  The stiffness lasts half the day, goes a way for a bit and then comes back.  The pain has leveled off to an 8 (it was unimaginable at the onset- I would have rated it at a >10) but my hands are my life line.  I am a writer.  I am no chef but I love to cook.  At work I deal with a crap-ton of paperwork and data entry.  Since the flare began when I do type, my fingers don't "listen"  and go where they are suppsed to.  Everything takes longer than usual because I have SO many typos and have to keep fixing them.   I NEED MY HANDS.  Yet here we are.  This blog has taken me almost 2 hours to write as I stop and massage the hands and wrist, get up and do something else and then come back to it.  My fingers are so swollen in the morning that I haven't been able to wear my rings consistently for weeks.

That picture is from just a few minutes ago.  See the reddish/brown on my ring finger?  That's from where my wedding rings were so tight on my enlarged fingers when I woke up two days ago that I had to take and leave them off.  My rings, that I wear constantly on both hands and never even took off when my husband and I were separated used to be loose enough that if I flung my hands out- they would come off. Now, they are snug all of the time and both hands currently look like this.  My knuckles are bruised, my wrist is bruised and everything is still swollen at 3pm.  Ironically- that's not even the hand I aggravated when I fell in the shower a few days ago.  The left looks the same as this one except I have indents from the rings I wear there rather than bruising.  I am using a brace to rest the wrists until I find something that I can't do with it on- like type this up- then put it back on for a while on whichever wrist and hand is thobbing more.  I can handle the pain and stiffness, I know I can.  I am tougher than this. I just find that the fact that the rest of me is subsiding but the hands and wrist are hanging on so long is beyond frustrating, it's almost infuriating.  I want this to stop.  I want my pain level to lessen, I want the stiffness to go away, I want to be able to use my hands like my usual normal.  It's also frustrating to think that this may be what I have to look forward to as the diseases progress.  Is this a peek into my future?  If so, it may take me a long while to adjust.  It may be harder than I I expected.  And I don't like that thought.    

"Have A Good Day!"

      How many times a day/week/month do you say those words without thinking about them?  I am sure that you, like me, are sincere when you say them but do we really think about it?  I know that in the retail world I hand the customer their change and purchase and say them many, many times over:  "Thank you!  Have a good day!" - off the customer goes and neither of us thinks of it again.  Well- I have been thinking about this since I had a conversation with a sweet friend yesterday.

   We were supposed to get together Saturday night and ended up not being able to do so.  She has been having a lot of issues with her Fibro.  I have been in flare mode for a while now.  Friday night I was feeling okay so hubby and I did our "Pizza Friday" at Papalino's in Louisville.  It's my fave and he LOVES their meatballs.  While we were out we picked up tickets for Saturday night for an event that we enjoy.  One of our Vape Shops puts on an "After Dark" tasting event the last Saturday of the months and tickets are only $5 so we planned to go.  I messaged my friend and she was feeling up to it (they usually go- they introduced us to this place) so she and her hubby went and got their tickets.

    I woke up on Saturday morning fairly miserable.  Exhauted, achy, and Fibro/RA Fog in full effect.  I lazed around for a while,napped some/lazed some more and finally hubby asked "Are we going to go do anything today?"  In my fog, I totally forgot that we had planned to hit the flea markets and the new Verizon Smart Store grand opening during the day before the event. We ended up doing nothing more than reading books and laundry all day.

    In the end I disappointed my husband and my friends, though it's easier for her to understand than for him.  I can't help but wonder what it's like for the spouses and family and caregivers of Spoonies.  Flares come and go so quickly and we are so caught up in the midst of the pain that our world revolves around it but what must it be like for them?  I know that for the last few weeks I haven't known from one hour to the next what I would be able to do.  I could be sitting and typing, playing a game on Facebook, or just watching a movie and when I go to get up I feel 104 years old. I plan to cook a nice dinner and work all day then come home and just want to sleep.  We make plans, such as we did Friday for our weekend and I wake up the next morning useless as a slug.  My world is in constant flux due to my health.  So what must it be like for my husband when I throw his life into flux as well?

     Today, the fog had lifted and I was feeling a bit better and we decided to do the Fleas.  I was talking to my friend about last night and as I closed the conversation we ended with the typical "Have a good day!" "You too!"  and it sent my brain into a tizzy.  "Have a good day" takes on a whole new meaning when you are chronically ill.

Yesterday was a good day because I woke up with a clear head.  Yesterday was a good day because I am not confined to my bed because my back is screaming.  Yesterday was a good day because I made it down the stairs without help AND got Harley down too.  Yesterday was a good day because I made my menu for the week (it looks pretty good!) and made it to the grocery unscathed.  Yesterday was a good day because we made it to and through not one but two flea markets.  Yesterday was a good day because I was able to just doze for 20 minutes and feel refreshed as opposed to my usual 90 minute nap.  Yesterday was a good day because I thoroughly enjoyed the spaghetti I made for dinner and there was enough sauce left over for Chicken Parm later this week. Yesterday was a good day because there was a Harry Potter Marathon on ABCFamily and I caught my favorite early movies and we watched the Deathly Hallows 1 andDVR'd Deathly Hallows 2 so as to not miss Game of Thrones.  **Note-Any day that I can "binge" on Harry Potter is a Good day.**  It only takes one of these things for it to be a good day for me since I began my journey with a body that's falling apart.  How things have changed since I was fully healthy.  Today is a good day because I can get up and go to work.  Today is a good day because I am making a VERY healthy breakfast that I am very excited about.  Today is a good day because I already have dinner planned (pork chops, veggies, egg noodles) and lunch (a Granny Smith Apple, sliced Cheddar cheese and Ancient Grain Melba Toast) prepped.  Now- it's time to get moving.  SO- here's hoping that YOU have a good day!