A Pandemic Break or Broken by a Pandemic?

 

     Hi Long Lost Friends! I hope this finds you well and healthy.  

     In March of 2019, I decided to test out WordPress. I had heard over and over and over how much easier it was to use, how it had a ton of different applications etc.  I mean- it was okay.  Easy to use and yes, I could customize the background and look of every post but Blogger is just as easy to use.  I also was deep into my college classes and such and busy with work and family so even though I tested it out, it wasn't any more regular than I had been here.  

     Fast forward exactly a year and COVID-19 hit.  I don't know about you, but my revolving emotions throughout the pandemic have been; fear, anger, frustration, isolation, and anxiety, with a very small dose of thankfulness thrown in.  I don't know that I have ever, in 53 years on this planet, had another period of time that was so suffused with negative emotions.  Perhaps a day or even a week, but certainly not a year.  I have spent much of the last couple of months really thinking about this and here is what I have concluded about these emotions that have taken over me and why they were there: 

Fear- Fear has been dominant.  Fear of catching the virus, Fear of my family members catching the virus, Fear of losing one of them, Fear of losing our jobs, Fear, Fear, Fear. 

Anger- I have been SO angry at those people who refused to believe that the virus was a real, deadly thing, that they didn't need to wear a mask, that those of us who did were "sheep" to be shamed for living in fear.  I have been angry that the collective "we" were not ready to deal with this pandemic better than we were.  It's as if we were completely caught with our pants down around our ankles.  

Frustration- Like many, many businesses, mine was affected by the pandemic.  My customers are college students and one year ago this coming week, we just shut our doors along with the school.  That meant that all of my staff was gone in an instant.  For months I went to work, 5 days a week all by myself to wait for the UPS guy to deliver books, pick up online orders that I pulled and processed and deliver rented textbooks that my students sent back.  It was tomb-quiet, it was isolating and it was overwhelming.  And then- the axe dropped.  Due to the money that we were haemorrhaging being closed, my Assistant Manager's position was eliminated.  I vacillated between furious and frustrated for a very long time because I was anticipating her return.  We were a great team and losing her after she had been on unemployment for months waiting for us to bring her back from furlough pissed me right off.  It wasn't fair to her, it wasn't fair to me and it didn't look good for me to ever get caught up. Shortly after I was allowed to bring back my seasonals but there are a lot of things that only management can do.  After about 6 weeks, they allowed me to promote one of my seasonals to a PT supervisor.  It helps but quite honestly, I am scarred enough by this past year that I don't trust that she won't be eliminated either.  That mistrust is frustrating as well when you consider that in 10 days I will have given 18 years of my life to this company.   

Isolation- haven't we all felt isolated?  The whole quarantine thing is making everyone feel isolated.  Not being able to see my parents for months on end, not being able to see friends or other family members.  Not being able to get closer than 6', much less give hugs to those we did accidentally run into at the grocery.  Going to work and being completely alone with the exception of seeing the UPS guy once a day and our university police popping on occasion.  Both Jim and I were "essential" in that I had to be at work to get ready for the new term and he works in manufacturing.  SO while everyone else was at home- we slogged off to work every day.  That was kind of isolating itself.  People didn't understand why we were allowed to go to work when we weren't first responders.  

Anxiety- I took the pandemic to take extra classes and school full time for several semesters so that after the current term, I will have four classes left to go to graduate.  I have been anxious about completing my degree, anxious about my ability to successfully do my job at the current staffing levels because it calls on me to be much more physically involved.  Books have to hit the shelves no matter how many of us are working.  Anxious about both of us keeping our jobs in the pandemic.  Anxious about finding a new job when so many people are out of work.  Anxious about finances in general.  Anxious about my health, my parents health and Auggie's health.  

As for the tiny bit if gratitude?  Well, SO far we have kept our jobs, so far neither Jim nor I have caught COVID and I have had my first shot.  I am eternally grateful that when we almost lost my mom to COVID, she was able to rally back to us and that Dad didn't get it worse than he did.  I am grateful that my chronic pain conditions haven't flared more often than they have and that though my lung disease has flared (culminating in 8 bouts of bronchitis and/or pneumonia in 12 months) my new ENT has been terrific and proactive.  She actually listens, which feels like a miracle these days.  I am grateful that Auggie's vet has kept going until she finally determined that my poor little man has an autoimmune illness too.  Now Auggie is on long-term prednisone so that's fun.  I am just grateful that it didn't manifest until he was 12.  

So there we are.  I am ready for things to get to whatever normal will look like.  I am ready to be able to give good hugs.  I am ready to feel financially stable, I am ready to get back to writing.  I couldn't write in that state of mind. I just felt so out of control of my own life that I was paralyzed and going through the motions.  Though I am slowly coming out of the constant negativity- I almost feel that all of this has triggered and left me with a low-grade depression, which means I need to find my gratitude all the more.  

Quick UPDATE on my craziness.

I want to thank all of you who have been sending thoughts and prayers for my family.  I just wanted to update you on how Dad is doing. 

After a long hospital stay, he was released- but - he was not able to go home because though there are only 3 steps at each entrance- he was still wheelchair-bound and even with his walker or scooter couldn't get up them because they are steep.  So he and my mom have been camped out at our Aunt Karen's  (mom's sister) house for almost 2 weeks.  We all appreciate her letting them stay with her and Dad's enjoying the gorgeous view of the Ohio River and watching the barges go up and down all day. 

On Friday Dad went in to have the Achilles surgery and will be in a splint until the stitches come out and then a cast for 6-8 weeks.  That part of him is on the road to recovery and for that, we are so grateful. 

He's also gone back to the neuro-that news wasn't as good.  It seems the vertebrae is fractured worse than originally thought even with the brace.  When he goes back they will decide if they will do Vertebroplasty (injection of bone cement into the vertebrae without fusion) which would bring almost immediate relief or if they want to keep him in the brace for the duration.  I am 100% sure he is voting for the cement.  I just want him to have whatever will not cause more problems down the road. 

As for my sleep- Jim has put it best- he says that I no longer sleep, I just take multiple naps.  He's right, the question is how to fix it.  It started when I was having such severe acid reflux at night and now it's taken hold.  Now that the ulcer is subsiding and I am having significantly less acid reflux I guess I need to re-teach myself to sleep a full night.  It won't be easy but I am taking Spring Break off so it will be a good time to do it.  I am sure the flares are linked so it's a task that must be done. 

Thanks again for all of your thoughts and prayers.  They are helping keep our spirits up! 

Happy St. Patrick's Day!

    Happy St. Patrick's Day friends!  As someone who spent 25 years working in the hospitality industry (hotels, restaurants, bars) St. Patrick's day was nothing more than one of the several Amateur Night's per year to make some decent money.  What's an amateur night you ask?  That's the night that all of those people that rarely get out head to the bars to get their drink on.  New Year's Eve, St. Patrick's Day, Thanksgiving Eve up north (It's reunion night for all coming home), and lesser so- Memorial Day weekend, Labor Day weekend, Fourth of July weekend.  Every server and bartender that I know is aware that those nights are a totally different animal of customer and tips could be through the roof or through the floor.  We also know that if we aren't working- you won't catch us on the road with so many drunk drivers because we don't know that customer and for all we know it could take half the alcohol of a more....seasoned customer. 

Things changed for me a few years ago in terms of St. Patrick's Day.  My Daddy was adopted as a child, something that's never been made a big thing in our family.  I was diagnosed with all of these stupid illnesses, something that I try not to make too big a deal of within the family.  Then Ancestry DNA and 23 & Me came to be.  This was just around the time that Josh became a real adult and got serious about a lovely girl.  Even though she already has two kiddos and they don't plan on having any more, I started to wonder where Dad really came from and what my DNA could pass on to Josh and any potential progeny.  Yes- I am very well aware that RA is not necessarily hereditary, but what else was percolating in there?  So- I did BOTH tests.  I both to see if they matched- because I am persnickety like that- and the did to the nth degree. 

The traits matched me on almost every level, which was surprising but cool.  The health side was all great news (only one matched variant out of all of them) so that was a relief. The surprise was my heritage.  I am literally that Ancestry DNA commercial.  We thought we were German, German and more German.  Both sides traced back generations.  Nope.  Not even close.  We shall blame Dad for this- since Mama's side is actually traced back to Prussia, but my DNA shows that I am almost 50% Irish and British and only 15-20% German!  So now- St. Patrick's day is my holiday too!  Of course- it will never, ever top Halloween, but I am claiming it none-the-less.  Of course, my dear husband who claims lots of Irish in his heritage, still won't let me make Corned Beef and Cabbage even though I have always loved it because he cannot stand the smell.  *Funny memory* his Mom used to make Corned Beef and Cabbage for herself, Josh and I,  and if the family wanted to complain, they could go elsewhere for dinner.  Since none of the rest of them would eat it- they all scattered and we had a lovely dinner and leftovers.  She was a hoot- I miss that and her.

On that note, I am off to the grocery to get prepping for the week, then I have an assignment to write for my PR Writing Class and a test in Geography before my Sunday night shows.  Have a lovely St. Paddy's day and if you are heading out- be careful on the roads!

It's Been One Heck of A Challenging Year Already!

      Wow, is it really only March?  The best example I can give as to how this year has gone so far actually happened this week.  Yesterday morning, I woke up at one, fell back to sleep around 2 and at 3:30 Auggie was losing it to go outside, so back up I got and decided to stay up with them.  As I was standing there, waiting for my coffee to brew and waiting to bring the dogs back inside all I could think was "It's okay, it's Friday, tomorrow I can rest."  As I shuffled into my office, coffee up gripped with two hands because they are flaring, almost tripping over dogs who were jockeying for position with treats in their mouths, it suddenly dawned on me that it was only Tuesday.  It seems that after this month, 3-3:30 am is my "new normal" time to get up because I just naturally wake up and can only go back to sleep if I force it.  I think it's because I know that I can be productive as soon as I can get my hands, feet and hips loosened up and I have so much on my plate that I need the extra time in my life.  

    School has been an UBER challenge this semester.  I mentioned a few posts ago that I am taking three courses this semester.  Even though it will afford me a Summer vacation without worrying about taking finals (our biennial family reunion is the week of the first Summer semester finals) it has not only worn me out but shaken my confidence.  There's a joke that "C's get degrees" but every time I work on my Physical Geography course, I use it as my mantra.  I just should not have done this course online.  In addition to having an effect on my confidence and my GPA, it's also affected the time I've had to work on my other courses and that's showing as well.  I was very proud of the work I've done thus far, and I'm watching the house of cards fall.  I can only hope to get out of this term without too much damage and never take three tough courses in one semester again. 

     Naturally, there have been health challenges this year because when are there not?  I have had several rather painful flares.  Thinking about it objectively, I am going to say it's been a solid week -2 every month.  But wait- there's more! For quite some time I have been having issues with my skin.  I keep getting painful blisters on my scalp, which then burst and scab and come back again. Because it was on the scalp-  I thought maybe it was a reaction to colouring my hair, so I stopped that- and it still didn't go away. Then I thought maybe it was a reaction to the Plaquenil, so we took me off that.  When it didn't go away, back on it I went.  I've tried psoriasis shampoos, clarifying treatments, you name it- then it started to show up on my back and on my face and I gave up.  So now we add a Dermatologist to my arsenal of doctors when they see me next month.   I feel like I am collecting specialists at this point and honestly- if this is another offshoot of the RA, you will probably hear me scream from wherever you are. 

    Finally, a few weeks ago, on the day we did my store inventory,  my poor dad took a nasty fall.   He and his neighbor/bestie were carrying a 55" tv up the very steep stairs from his basement man cave because Mom bought him a new one for Valentines Day/their Anniversary and Geek Squad was scheduled to come out and install the new one.   Mr. Dan was up top, Dad down bottom. They were 4 steps from the top when somehow Mr. Dan either missed a step or slipped and both went "ass over teakettle" down the stairs.  They ended up with Dad on the bottom of the pile on his back, Mr Dan laying on top of him and the TV like a cherry on that sundae.  Mr. Dan was bruised and battered and had a cut on his forehead from the TV hitting him.  Dad had a fractured L2 vertebrae and a torn Achilles tendon.  As soon as Mom let us know that Dad had been taken to the hospital, Jim and I threw some things in a bag, threw the dogs in the cars and headed out.  It was a Saturday when the accident happened and I was fortunate enough to be able to stay through Monday to find out what was going to happen.  Dad was in the Ortho/Neuro unit at Deaconness Hospital Midtown through Wednesday and then they moved him over to the Rehab unit on the same floor.  They have spent the last 10 days or so teaching him to move with a brace on his back, use a walker and try out a knee scooter.  The brace will be with him until the fracture heals.  As for his Achilles, he has yet another MRI this morning and tomorrow will find out if they will do surgery or progressive casting to treat that.  As of now, he still can't put any weight on it without excruciating pain.  I just want him to get well.  They sprang him from inpatient care yesterday but he and Mom went to my Aunt's Mom's sister) house for the timebeing because he still can't get up the few stairs into their house because he is currently in a wheelchair until they begin treatment.  I know they really, really appreciate my Aunt opening her home to them but I am sure will both be very happy to get him home and back to some kind of normal. 

Are you tired yet?  I am tired just recapping all of this and it's time to get ready for work!  Please keep my Dad in your thoughts/ prayers in hope that he gets some relief soon and have a lovely, lovely day!     

Please Stop This Ride, I Want to Get Off.

     It's been an exhausting week.  We haven't been overly busy at work but it's still a lot.  Sales are down which means those on the mountain-top reevaluated my payroll and decided to eliminate the only non-management full time position on my roster yesterday.  She's a very nice lady and we've worked together for over 10 years now.  It's was SO hard to have to tell her that per position had been eliminated- but I am sure it was much harder to be on the receiving end.  Once I finish homework this weekend I am going to have to spend some time working on the new division of responsibilities for the store.

     That was the end of the week.  The rest of the week was a medical pain in the backside.  Every morning I wake up more and more swollen and without the anti-inflammatory.  The amount of time that I am stiff is getting longer too.  Another effect of the lack of anti-inflammatory is that the bulging discs in my neck have pinched a nerve.  That means that if I spend any length of time looking down (like- at a keyboard) I go numb from my left TMJ to my finger tips and I have a heavy ache from my shoulder to my elbow.  It's hard to lift anything or even wear my backpack when it constantly feels like you are poking a heavy bruise. 

     My title today is Please Stop This Ride, I Want to Get Off.  If I were in the medical field it might be fascinating how interconnected all of these systems of the body are and how treating one thing leads to another or having one illness leads to another.  Being the recipient of the constant new diagnosis and treatment, on the other hand, is not fun, not interesting and is getting entirely too old. I am 51 years old and just cannot imagine another 20 or so years of compounding illnesses.  If things stayed status quo, I could come to terms with it- but I feel like I am on a roller coaster, slowly climbing to the top of the hill, inching closer and closer until...WOOSH, the bottom drops out and down we go, screaming to the bottom only to start it again.  I used to love roller coasters- until my life became one.  Maybe just a break, until I finish school, would be enough.   I wonder if that could  happen? 

Oh well- the weather outside is horrific (low 40's and intermittent torrential downpours today, dropping sharply tonight and bringing in 3-6" of snow with it overnight) so today's a good day to stay home, nap, do homework, and make a nice beef stew for dinner.  NO need to get out in this weather.  Be safe everyone!   
       

Back to School Rush time- again and again

   Another Back-to-School Rush is in full swing.  For me that means working every day through the 12th.  Of course, now that I am a student as well, it also means getting my head straight for learning as well as busting my cookies in the store.  Last term I took my first Hybrid course.  That means that we meet one day a week on campus and the rest is online.  I much preferred that to fully online classes because that one day face-to-face allows for the immediate questions and answers that I need to feel like I am going in the right direction.

    Spring is a slower time for the store so I am going to attempt to take three classes this semester- one face to face, one hybrid and one online.  What that will require is a lot of discipline on my part.  It will also require that I manage my energy levels to the nth degree. 

    The challenge to that lies not only in the Fibro and RA but some things that cropped up within the last few months.  I was very sick in the Fall - the recurrence of Bronchitis and Pneumonia was a multi-month process and left me beyond exhausted.  When I didn't bounce back my doctor did blood work and discovered that I had developed severe anemia.  Combined with the acid reflux I have been fighting for years now, I ended up at the GI doc who diagnosed GERD just by looking at me and my history and then went a step further.  A few weeks ago I had an endoscopy and he found a big old linear ulcer to top it off that he felt was caused by so many years of NSAIDS.  So now- they have pulled me off the NSAIDS, added lots of iron, doubled the Prilosec in the morning and added RX strength Zantac at night.  It's a lot but my energy level has *almost* righted itself but I am hopeful.  I just have to work with not being on anti-inflammatories.  We are also in the process of changing my RA drug but that's another saga for another time. 

     In the meantime- wish me lots of energy as I tackle these classes this term.  It's one step closer to being done with my degree!  Until next time, I hope your weekend is filled with blessings. 

     

How That Hopeful Day Panned Out

     I wanted to wait long enough to see how things would settle before I did an update because thus far, each day has been different.  Ten days ago, my pain management doctor did a series of facet injections on my right lumbar region.  I was given the option of choosing which side and as my right has always been significantly worse than any other area of my body, that was my choice.  When I arrived that day, even with my meds on board my pain level was between a 7 and 8.

The nurses checked me into a screened room in the recovery area, checked my vitals, and then took me back to the procedure room.  As I lay face-down on the table, they cleaned my back with antiseptic and Dr. Habimana, using an x-ray for guidance, gave me several shots of anesthesia in the areas in which there would be shots.  The anesthesia was a quick pinch and then not a lot of feeling on the skin.  Next came the injection.  It is my understanding that the injection was a mix of an anesthetic and a steroid.  The anesthetic to numb the nerves and the steroid for inflammation.  The upper two shots were not bad, just a little pressure as the fluid went in.  If you've ever had a cortisone injection- it was pretty similar, just felt like several times the amount.  I say felt- because I don't know for sure, I just know the amount of pressure and time vs a cortisone injection.

The final injection was directly into the area that has been most painful for years.  I try to be pretty stoic when it comes to things like this and to breath through it ( I mean, if I can sit through 8 tattoos and still want more, what's another needle or two? ) but this hurt like all hell.  I was holding on to the table for dear life and in my head I made up several new swear-word combinations.   My entire body tensed but they talked me through it and soon it was over.  They wiped down my back and applied bandaids and helped me off the table and into a wheel chair then took me back to my recovery area.  I had to wait 30 minutes to ensure I didn't have an adverse reaction and because it's been several months they wanted a routine drug test so they filled my ever-present thermos cup with ice and water and I sat and read until they let me go.  When I left, I would say my pain level was down to a 3- which was amazing! Other than feeling numb, I was fine and was able to drive home.

My after care instructions say to rest for 24-48 hours, not to remove the bandaids for 24 hours, no strenuous activity for 3-4 weeks after the final series of shots and continue normal med routines.  Easy enough to follow and so I went home and rested.  I was pretty numb for the better part of 24 hours.  Once that wore off, I felt like I had a MASSIVE bruise for several days but it wasn't unbearable.  By Monday night even that was wearing away.  Since then I have taken a yoga-ish class, walked longer and farther than in 2 or so years and more.  As long as I take time through out the day to stretch, I am better than I have been in years.  My pain level sits at a solid 2 and I feel like a new person.  I cannot wait to go back on Tuesday and have the left side done.

One very interesting thing that I have learned in this process.  When you are focused on pain in one area, everything else seems minimal.  Once that pain is neutralized- well, the other areas say "HEY! We're still here!".  I thought to myself "Whoa- I knew my left side, shoulders, hips etc hurt-but not as bad as this!"  It's been an eye opener but I am so, so glad I did it and I look forward to seeing how long this works.  I know it's a temporary fix, but I will take it because I am so, so very grateful for the reprieve.

Have a lovely Sunday!

Arthritis Today and Life Lessons

     I am incredibly honored that Arthritis Today magazine chose me to be one of their Voices for the Arthritis Awareness Month issue.  The question they asked was: 

What Has Having Arthritis Taught You? 

   You can see my reply in the link above.  They gave us parameters but I could have gone on for days.   I never imagined that, on the fateful day that my LPN looked at me and said "We are going to run some tests but I am pretty sure that you have Rheumatoid Arthritis" that my life would change so significantly just as related to that statement.  It was like diving off of a cliff and hoping that I don't hit the reef.  Before my diagnosis I had never been cognizant of RA, even though I later found out that my Great Aunt lived a very long life with RA.  So, beyond my official reply, here are a few of the things I have learned.  

•  Body parts can permanently distort all on their own.  When I was diagnosed, I felt relatively "normal".  Now, I look down at my hands and my index fingers are rotating in toward my middle finger and my pinkies don't straighten and if I straighten my hands, the pinkies don't come in with the rest of the fingers any longer.  My feet are the opposite- my little toes and the next one are beginning to rotate out and the next is also bending inward.  I don't like the word "deform" but that's what's beginning to happen.  The positive part of the lesson is- it doesn't hurt, it just "is".  
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• One illness can become two-three-four or more.  It's been a very, very hard lesson to learn as I have been diagnosed with Fibromyalgia, then Degenerative Disc Disease and then Rheumatoid Lung Disease.  I have been very open with the fact that beginning with DDD I started asking "What could possibly be next?" Each one has taken longer and  been harder to deal with, both mentally and emotionally.  The positive part of the lesson is- I did manage to wrap my head around them and continue to be productive even when I felt like just crawling in my bed for a while.   
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• Health insurance is a bear to navigate.  Prior to 2005 I only used my medical insurance for routine things like annual physicals and OBGYN visits or the occasional illness or accident.  After RA- well, insurance has been and continues to be a learning experience. Am I the only one who remembers when you went to the doctor or the hospital and received one bill?  Now the bills are endless as they come from the facility, the doctor, the lab etc.  At some point, I may just figure out the rhyme or reason, but by then it will probably change.  The positive part of the lesson is- I am still currently able to work to afford my health insurance and the co-pays and balances.  
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• There are all sorts of treatments we can try before we get to something drastic.  This is a HUGE positive. Though I have been resistant (okay, let's be honest-I've been downright pissy) about having to go the Pain Management  route, next week the doctor is going to either do Radiofrequency Ablation on my lower back or, if it's not viable, give me a big fat epidural.  One of these two should give me some relief from the relentless pain.  I would LOVE to have the whole summer without back pain.  That would let me work with Fen on leash training (she HATES walking on a leash) and take Auggie for walks as well.  I haven't been able to do that in a long time.  At the moment, around the cul de sac is about as far as we can go.  Epidural would last, possibly a few months.  RFA can last 6 months to a year.  How hopeful is THAT! Should I be one of those anomolies that the treatements for whom the treatments don't work, I think it will be time to start looking into holistic remedies.  I know that acupuncture works for a week or so.  Maybe I will check and see how much a package of treatments cost.  There's a float center being built as I type.  Josh says that floating is better than massage for relaxing the muscles and joints and I still have to gift certificates from Jim for Christmas to use.  Perhaps that's the way to go next?    

 That's just a few of the things I have learned but the biggest lesson of all is gratitude.  When I was diagnosed there was no way that I would have seen the positives in these lessons so easily.  Now, I actively look for it so that I can be grateful.  It helps me navigates the stresses, it keeps me from spiraling into depression and helps me get out of my head when I am feeling overwhelmed and it allows me to see how very blessed I am despite my difficulties.  I am the first to admit that I am still learning gratitude every day but I am working the journey as best I can and I can see what a difference it's made for me.  

Now I pose the question to  you- what have your difficulties- be it RA or another challenge- what have they taught you?  

Four Weeks and Counting- AKA #Overwhelmed

  Well, we are 7 weeks into school, 4 weeks in to Haunt season and work is work is work.  Add in PT appointments and hubby taking a second job and I am feeling #Overwhelmed.

Oh, I know- it's my own fault.  I have taken this on myself.  Work is always work.  The only thing that changes is how much payroll I have to work with.  Haunt season is, of course, my favorite time of the year, and I am the one who decided to go back and finish my degree.  Hubby- on the other hand, realizes that if he's going to be in a bowling league and hang out with his friends he needs to have disposable income so he took a part-time gig at Lowes, where he quite enjoyed working and would still be had it not been for the money.

Work, in most sectors these days but especially in retail, is very much about controlling expenses.  The easiest way to control expenses is through payroll.  The Catch-22 is that the work does not stop or lessen.  So we do more with less.  It's a strain, it's stress, it's just a lot.

School is actually rather enjoyable when we don't factor in my "other" role on campus.  I love learning, I love being in a classroom.  It's hard to balance that I am representative of the "Big Bad Bookstore" and being a regular student.   I have to listen to the complaints as to how awful it is that we charge SO much - when we don't set the prices and I spend hours and hours looking for the lowest price options.  It can be a strain to sit there and take it and not speak up.  However, eventually, the students forget and I am just another student.  After the students forget- the prof's don't necessarily do so.  I don't mind working closely with them to ensure that they have what they need.  I enjoy building the relationship, but I am still a student first in the classroom and would like to get rid of the distraction of being "the Bookstore Manager" when I am in class.

Haunt Season makes my heart happy.  I know it's silly.  I know it's...unusual.  But I get to be another person, I get to give people a thrill.  People come to haunted houses because they either want to be scared or someone drags them.  Either way, for just a few minutes, I add to their experience and it's SO much fun.  I don't have enough time to tell you all the stories but we get a lot of laughs.  It feeds the acting bug without having to give up my life to be an "actor" and I am allowed to have a lot of creative freedom and latitude.  Thankfully it's only 8 weeks of regular work because I am tired.  So, very tired.  Thankfully I have Sundays to rest up.

Jim taking on an extra job is not that big a deal.  It's exhausting for him but it's his choice.  The only reason it affects me is that I have more flexibility and we have the two dogs.  So that they are not stuck in the house alone all day, I have to go to work at 7am, take an hour for lunch and go home and let the pups out then head back to work and/or school Monday through Thursday.  On school days I am at work 7-4 (with my lunch) and then in class 4:15-7:15.  On the other two days, I am at work 7-6:30 or 7 with my lunch.  I do this so I can get out early on Friday to go to the haunt and because by Friday I am exhausted and need to nap.  It also allows me to book my appointments and such on Fridays and not mess up my regular schedule.  It just makes for very long days.

PT is...interesting.  The Spine doctor says that I have arthritis in 80% of my spine and that have 5 discs that are in bad shape.  The goal with PT is to get my loose enough to function.  Currently, we are using traction twice a week, ultrasound and trigger point massage.  The massage feels amazing.  The ultrasound feels good too.  Traction is not so fun- but it's making a difference.  My range of motion is better.  I only wish that I could have trigger point done every day.  We have another week or so of this then I will be on my own till I am back to the spine doctor.

All of this is manageable on their own but together I am a big ball of stress.  Four more weeks.  Then haunt season will be over (sad sigh) and I will be able to take back my weekends.  It will be both sad and a relief.  Until then, I plug on and on and make it through and make plans for a lot of self-care when it's over.

Hope you all are well.

Testing. 1..2..3..Testing

One of the less fun sides of both chronic illness AND ageing is all of the tests that we have to endure.  Most of us with RA have to have blood work routinely.  With Degenerative Disc and Rheumatoid Lung, it's X-rays/MRI's/ Breathing tests etc.

Then there's ageing.  I turned 50 last month which means that in addition to routine blood work, the always pleasant Mammogram, and "female" testing I was given the gift of a Colonoscopy.

This week has been rough.  I had an appointment on Sunday for a deep periodontal scaling -thanks lowered immune system!  I haven't had a cavity since the 90's but even with taking care of my teeth, my lowered immune system opens me up to periodontal infections.  I recently lost three back teeth due to this and we have to do whatever we can to keep the rest.

Tuesday I went to the Spine Center to follow up on the DDD.  The x-rays show "multilevel degenerative disc disease."  The C3-C7 show thinning, spurring and "subluxation" which essentially means that my neck is bending the opposite way that it should.  The last MRI in 2014 showed that two of those discs were bulging.  The lower back showed that the L4-S1 are thinning, have spurs and show signs of "Dextro scoliosis".  In addition, both areas have lots and lots of hereditary (thanks Gran!) arthritis with the L5-S1 looking like cotton candy instead of nice and crisp.  That explains a lot of the constant pain.  I don't want to add more meds and still refuse narcotics so we are being conservative.  That means it's back to PT for measurement for a cervical brace and dry needling and adding Lidocaine patches 12 hours a day.  In two months, I go back and if we haven't seen any improvement it will be another MRI, a lower back brace and on from there.
Tomorrow is the dreaded Colonoscopy.  This is my first and hopefully, I won't need one for a long time.  Also hopefully, the prep is worse than the test.  I am not going into the prep, I will just say that it's not fun.  Fortunately, I have the time needed to take today off for the prep and tomorrow off for the test.

Next week- it's back to the Rheumy for routine blood work.

As I sit here and reflect on this week and psych myself up for tomorrow I have to think about the medical costs.  I am so very grateful that Barnes & Noble Education takes good care of its employees in terms of the insurance it offers to us. I have a co-pay for visits, a reasonable deductible and then pay about 20% for the rest of the year.   Even with good insurance, those costs add up!  I just cannot imagine what someone who did not have insurance would have to pay out of pocket for all of these procedures and tests.  I completely understand how medical bills can bankrupt a family.  It makes me incredibly sad that in a nation such as ours, this can be allowed to happen.  But that's a post for another time.

Be well, my friends.  Be well and get whatever tests your doc feels is necessary.  Though they are expensive and time-consuming, they will help head off any nasty surprises.  

Reclaiming Things I Surrendered To RA

     Over the years I can think of many, many things that I have given up to RA.  Exercise, good wine, being able to plan.... But this weekend I reclaimed something.  It was small but it felt like a victory.

 Growing up on Air Force bases, the Bowling Alley is often the hub of social activities.  We kids hung out there as teens, my MIL worked at one- you get the idea.  For many years my husband's family was a family of bowlers.  Marrying in, it was natural that I join the teams.  Though I enjoy bowling, I was never as hyper competitive as the in-laws so after years of bowling with them, I took a break for a few years then joined some friends for a "fun" league where I did exponentially better than with the pressure of serious competition.
Just about the time I was at my peak- I was diagnosed with RA.  My onset began in my hands and feet.  Feet that felt like I had run a marathon upon waking and hands that were in claws when I woke and ached all day meant that one of the first things that fell by the wayside was my fun league.

I haven't given a thought to even picking up a ball in a dozen years. That's not true.  I've thought about it- and immediately dismissed it because of my hands.  We even got rid of my Micky Mouse decorated ball and matching shoes when we moved out to So. IN 10 years ago.

Well- last week hubby came home from his bowling night and said to me "So- after haunt season you're going  to bowl with me on Friday nights."  I looked at him as if he had lost his mind and said "Oh AM I?  I haven't picked up a ball in years!"  He then sweetened the pot the next day.  "If you do, I will buy you this Patriot's bowling ball and gear"  I laughed because he knows my sweet spot and agreed to talk about it.  After considering it, I told him we would have to give it a shot because between the RA and the acrylics I pay good money for (Vanity- thy name is woman!) I didn't know if I could do it.  We contacted my dad because he enjoys a good game and agreed to go this past weekend.

And so we did.  I wasn't great.  The old back doesn't allow me to move the way I did when I was bowling regularly and I was very hesitant- but I broke 100 so I was pleased.  Hubby looked at Dad after my first strike and said "Guess I am buying a ball!"  We only bowled one game because a group of people with ZERO etiquette was put on the lane next to us and essentially crowded us out so we will have to go again and bowl three games as if a normal league play so I can see if I can do it, but I enjoyed it and am considering his request.

So take THAT RA!  You don't necessarily get to keep the things you took from me! 

50 for my 50th.

Today is my 50th birthday.  Today I am reflecting on my life, my goals, my bucket-list.  As part of my reflection, I have made 5 lists of 10 things that are on my mind.

Ten things I am grateful for in the big picture:

1-  I am grateful that I have a wonderful, loving family.  Parents, sisters, husband, my loving child, nieces, nephews and friends.  Family of my blood and heart- all of whom are terrific people.

2-  I am grateful that I have a good job that affords me health insurance and a decent living, good benefits and that, for the most part, I enjoy.

3-  I am grateful that I have two sweet, smart pups who love me unconditionally as much as I love them.  They are truly emotional support.

4-  I am grateful that I have a home to live in, with heat, air conditioning, clean water, a good bed, and  comfortable furniture that I can afford to pay for and that is safe and sound.

5-  I am grateful that my health has held out longer than initially expected.  The first Rheumatologist that I saw was sure that if we were not very aggressive in my treatment I would be in a wheelchair by 45.  Despite failing all of my treatments so far- I am still holding out and holding on.

6-  I am grateful that I have a love of books.  Books can not only educate you but take you to new worlds, open you up to new interests and shift your world view.

7-  I am grateful that I can afford food.  Not just to nourish my body but also to indulge my joy of cooking.  Experimenting in the kitchen, finding new flavor combinations or ways to manipulate those flavors into something that is delicious is incredibly satisfying.  Especially when someone you love enjoys what you produce.

8-  I am grateful that I have my quiet mornings.  While I could not get up and immediately get ready to go to work like a normal person, it's lead to my quiet mornings.  As part of my "new normal" I get up, have some coffee, see the sun come up, watch the news or something on the DVR and ease into the day.  Even on vacation I was normally the first up and managed a cup of coffee or two either alone or with my sister before things got hectic.  It just helps me start my day in a good head-space.

9-  I am grateful that I began this journey.  Even when I fall off for a while, I can go back and read what I have written and be right back on the road to living from gratitude.

10- I am grateful that we made the move to the mid-south 10 years ago.  I cannot imagine my life had we stayed in New England.  It would be so very different.

Ten things I know for sure:

1-  I know that living with chronic illness may not be something I would choose but not suffering from it IS my choice.

2-  I know that the idea of forgiveness is much easier than actually letting go of hurts.

3-  I know that taking weight of is exponentially harder than putting it on.

4-  I know that finding something that you love to do, no matter what it is and how many people roll their eyes at you about doing it, can bring you vast amounts of joy.

5-  I know that Random Acts of Kindness not only make you and the recipient feel good in the moment, but can also make you want to do more and more. They can be a love drug if you let them.

6-  I know that there are people who, no matter how much you do for them, always expect you to give and give without so much as a sincere thanks- and that's not your fault.

8-  I know that it's not only okay but healthy for your overall well-being to remove those toxic people from your life.

9-  I know that we can learn about love and compassion from our animals.

10- I know that we need to take care of ourselves mentally and emotionally if we wish to live happy lives.  

Ten things I just don't understand:

1-  I don't understand "isms"- Racism, Ageism, Sexism, Classism,  Lookism, Sizeism, Ableism, Nativism.  It makes no sense to me to judge people just by how they look or where they are from.

2-  I don't understand labeling.  I am a Gen X'er.  I am a Mom. I am Straight.  I am a Wife. I am Caucasian.  I am Female.  I am a Moderate Independent.  I am somewhat Disabled.  I am so many different labels- yet not one of them defines me.  I am more than each and every one of these labels and an amalgamation of them all.  Aren't you more than each of your many labels?

3-  I don't understand how people can harm those who are defenseless- children, animals, the infirm.  What has to be going on in their heads?

4-  I don't understand being hateful to perfect strangers online.  If you wouldn't say it face to face, how is it okay to say it online?

5-  I don't understand dividing our wonderful country by party lines.  Democrat and Republican are not epithets.  Neither are Liberal or Conservative.  Why are we not working for the good of ALL of the country- not just the party that we identify with?  What is best for our country is a sound economy, safe infrastructure, ecologically sound utilities, equal access to quality healthcare for all, and leading the world in research and technology.  It is to follow our founders when they said " We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness"  The rest of the stuff- who you worship, your race, your sexuality, your gender, your family makeup- not the business of the country.  

6-  I don't understand people who believe that rules and policies don't apply to them and will throw a fit if they don't get their way.

7-  I don't understand people who think that it's okay to make a "career" of stealing from others rather than working for what they want. Do they not get that the person they are stealing from did just that?

8-  I don't understand how an argument, a territory dispute, road rage can be worth taking a life.  Every day the news is filled with murder, shootings, stabbings and more.  Life is worth so much more- when did we become disposable?

9-  I don't understand higher Math and the Sciences.  STEM is not the way my brain works-and when it comes down to it, it makes me kind of dumb in those areas.   I am more creative but that being said- smarter minds thank mine are tasked with math and science, and I trust them in their fields.

10- I don't understand a lack of work ethic.  If someone is paying me to do a job- be it sweeping a floor, cleaning a toilet or running a multinational company, I am going to do my best.  I am going to take pride in the job I am doing and be the best floor sweeper/toilet cleaner/CEO that I can be.  I don't understand how people can take a paycheck and just show up.

Ten things I still want to do in my next decade:

1-  I will complete my education.  I am starting back with my first class next week.

2-  I will shed the weight that I need to lose.  It's a work in progress.

3-  I will still fight my body against my disabilities.  Even if it means just a walk around the block, as long as I am able to move, my illnesses don't win.

4-  I will write for publication.  Fiction, non, magazine articles, news- nothing can stop me from writing.

5-  I will journal to leave a legacy for my child and grandchildren.

6-  I will expand my horizons.  I will continue to try new hobbies and test my interests to see what sticks.

7-  I will go horseback riding when I am NOT on vacation.

8-  I will create multiple new haunt characters.

9-  I will continue to be an advocate and ally for those who need my voice.

10- I will learn to say no when I need to take time to be good to myself.

Ten things on my Bucket List:  

1-  I dream of spending 4-6 weeks in Europe

2-  I dream of chartering a yacht in the Mediterranean for a week or so.

3-  I dream of seeing the rest of the US.

4-  I dream of Winters where it's warm, Summers where it's less warm.

5-  I dream of writing a book that touches someone the way so many books that I love have touched me.

6-  I dream of walking another marathon.

7-  I dream of contributing to animal rescue in a significant way.

8-  I dream of  going on a photographic safari.

9-  I dream of swimming with dolphins.

10- I dream of contributing to my world in a way that will be remembered.  Not me- but the contribution.


Today, though just another day for most, I begin a new journey.

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.

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!

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.  

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, ;-) 
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• 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.  

"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! 

And...It's Flare Time

     Just in time for the Memorial Day holiday, it's time for a flare.  The bad news is, well FLARE.  The good news is that I will have 3.5 days to recover from it before going back to work.

     I haven't had a flare like this in a long time.  Oh- there's the usual spikes and ebbs of stiffness and pain or one illness will flare while the others subside but this one is more of an attack and is definitely all three illnesses working simultaneously. I am sure, beyond a reasonable doubt that I have been overdoing and that kicked this off but I really don't have a choice.  People think, as evidenced by the many "When do you close for the summer?" phone calls, that Summer slows down for the bookstore after finals and graduation but it actually kicks up just as our payroll decreases.  While Summer classes have begun and traffic in the store is slower, on the back end we took in over 5000 rentals this term that need to be cleaned, picked, packed and shipped to other stores if we are not using them ourselves for Summer or Fall.  To that end I processed about 200 transfers (not 200 books, 200 shipments) going out this week.  We are also receiving shipments from other stores for our Fall term, receiving Summer 2 books, setting shelves for both terms and processing online orders.  While some places shorten their hours for summer, our hours don't change and with less staff, there still aren't enough of hours in a day.  That means I (because I am the only one on salary) have been burning the candle at both ends.  Quite a bit of stress and lots of physical labor, on top of a lack of sleep from the previously discussed acid reflux would be the precursor to this latest flare.

     Initially I thought that my body was just grumbling but I was wrong.  The lower back feels like I have a hot poker sticking in it on the right side and the hips are screaming.  All of my muscles feel like I have been hit by a truck.  The joints in my feet, my ankles, my knees, my elbows and my hands stiffen back up at even minimal rest and protest at any movement the rest of the time. My muscles are so tender that clothes with any weight hurt.   My meds are keeping me going but it's so exhausting that I have gotten home from work the last few days and had to nap for an hour as soon as I let the dogs out and back in.  Those naps have helped and you know they are needed when they haven't affected my bed time in the slightest.

     On one hand, this has been a stark reminder of how my life has changed with autoimmune illnesses.  A mere 8 years ago I was working far harder on my feet and doing physical labor and working far more hours than I do now and almost thrived on it.  I would go months without a day off and literally work until I dropped, take a few days and then do it again.  Now it seems a little too much and I am down for the count.  The difference in truly dramatic.  It's like I aged 40 years instead of 8.

     On the other hand, it's "just" a flare.  Whether it lasts a week, a month, a quarter or a year it will subside eventually and for that I can be grateful.  Besides, when it comes to pain, not only do I have a very high tolerance (I have been told that my "normal"- which is pretty stable- would put someone without my tolerance in bed for the duration)  but I tend to get fairly stoic.  I think it's the New England in me but I prefer to not "bitch" about my pain.  It doesn't lessen the pain, it doesn't help me feel better emotionally and honestly- who wants to hear it every day?  Instead, I function through a pain level of up to 8 or so and I just get slower and quieter.  I know some hate this phrase but I truly feel that "it is what it is."  There's nothing we can do about it, it's not going away, there is no cure, so why complain?  Moreover, the very last thing that I want is pity.  I would love if people could understand that I am going through something and that I may not be up to par and that I am doing my best, but I don't want to use my illnesses as an "excuse".    I don't ever want anyone to feel bad for me.  This is my life.  This is the hand I have been dealt and I will play it as best I can so I don't want people to feel bad about it.  They didn't cause it, I didn't cause it, it just is.

     So now, I will get some things done this weekend but perhaps not everything I want to accomplish. We had hoped to declutter our storage/2nd bedroom but that may not all get done.  Knowing now will allow me to reset my frame of mind and in doing so, I will be able to relax more fully.  I will work my scheduled half day today and then come home and nap.  When I get up, I will see what I feel up to doing but I won't push myself.  When I need to, I will stop and rest.  That will be the tone of the weekend.  I think as long as I keep things in perspective, it will be a good weekend.


“I will love the light for it shows me the way, yet I will endure the darkness for it shows me the stars.” 
― Og Mandino