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.  

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!   
       

School Is Back In Session!

     Today is the first day of the Spring term.  I am having a bit of "What in the world did I get into?" this morning that actually started last night when I opened my Geography textbook.  In reading the opening, I am interested in the Human Geography portion but that is the minor part of this course- this is essentially Earth Science- which I haven't even thought about since I took the class in high school in 1982.    The only part that piqued my interest is climate change.  I am woefully ignorant about the science behind it so that will be interesting.  The hard part- it's all online and not a....motivating subject for this non-sciency (yes, I made that up!) girl.  

On the bright side- I am very much looking forward to my Communications Law and Public Relations Writing courses this term, both of which start today.  One is my lunch, the other starts at 6pm.  In Comm Law we have a major term project that will require us to do a Freedom Of Information Act request.  It's a group project (ugh) and so we will have to agree on a subject but that should be interesting.  In PR Writing, our term will center on all aspects of PR writing for a single company/organization of our choice pending approval.  One would think the layup would be doing it for work but the fly in that ointment is- I don't want to be treated any differently than any other transfer student by my professors or fellow students so I don't mention my job in class unless directly asked or recognized. 

Healthwise, I am worn smooth out because of the current schedule but more- my body goes back and forth with swelling and pain due to the lack of anti-inflammatories.  I told someone the other day that it would take less time to say what DOESN'T hurt than outline what does.  I am also struggling with eating for my ulcer.  I really, really miss tomatoes and second thing I miss is chocolate.  Friday night was Jim's birthday and it took me almost 2 hours to find a restaurant that he would eat at and that I could eat.  It's not as restrictive as some- and I shouldn't complain at all compared to what my dearest friend just went through ( totally restricted elimination diet)- but as someone who cooks a lot with tomatoes, vinegars, cruciferous veggies and whole milk- it kind of stinks. 

My List for this week is what I am most happy about right now.  I will work on that after homework tonight. SO-  Count your blessings today and think about what makes you happy.  It's time so it's AWAY WE GO!  

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.

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.  

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.  

     

"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

I Am Overwhelmed

      In my world there are three uber-busy times of year.  The beginning of the Fall semester, the beginning of the Spring semester and April/May.  This time of year means end-of-year buyback, preparing for and opening the first Summer session, receiving and storing books for second Summer and Fall and Commencement.  Toss in my fiscal year-end and it's exhausting.   This year has been particularly challenging.
     I caught that lovely, long-lasting respiratory bug that was going around. Then caught it again.  Then caught it a third time.  It was several months of being sick off and on.  The "magic bullet" that finally killed it was a heavy-duty antibiotic and a jewel called Tessalon Perles.  Tessalon Perles are a non-narcotic cough suppressant that look like Vitamin D gels.  Just before round 3 I went to visit Mom and Dad.  Mom had the bug and Dr. Jackson had put her on them.  She suggested them for me as soon as I started coughing again and I asked my NP about them.  She said they LOVE them at the practice and gave me a script for them.  Four days later (as compared to 3 weeks) I felt human again.  I have been giving thanks to my Mama for them every day.  The surprise in this visit was that she prescribed me a rescue inhaler.  She said that since everything turns into bronchitis (Thanks Rheumatoid Lung Disease!) it would be wise for me to have one.  It had never been in my realm of thinking before but I was amazed at the difference it made.  She has left me with a refill on the Tessalon Perles and on the inhaler so that next time I can kick it as soon as it starts.

    During this time, my father's mother had a stroke from which she did not recover.  It was almost a two week journey that I wouldn't wish on anyone.  She was 97 years old and had lived her life but it was not a peaceful ending.  To be frank, she and I didn't particularly like one another so as we spent time in the hospital I found myself very conflicted. After the first few days of being basically unresponsive (she had a very specific DNR order and living will) she was taken off all measures and put into hospice.  She lasted another 11 days.  We know she knew we and the nurses were there because she would react to the nurses but beyond that there were no words and no response.  It was physically and emotionally draining for me and I was only there weekends.  My lovely parents were there all day long, all week long.  They are such good people.

    Another wrinkle in the fabric of my routine is that we had a huge systems change for our textbook ordering process.  This required learning a new system, ensuring the staff was training and "holding" all orders to be entered until the first phase of the transition.  By the first day we had over 1200 orders to enter which backed us up considerably.  The final transition is today.  There have been glitches- both in the software and in user-errors.  There have been moments of "I HATE THIS" as I found the differences and limitations which is surprising because I was very much looking forward to the "upgrade".  There have been moments when I called my best friend and mentor and said "did I struggle this much when you trained me? Because I just can't deal with feeling stupid and this software makes me feel just that." I think it was all about the timing (they wanted it in place for the beginning of the fiscal year- which officially began yesterday) but it was entirely mind-scrambling.

   The final straw sitting on this camel's back has not been a problem so much as a learning experience.  I made the decision back at the beginning of the year, with my doctor's permission, to go off of Orencia.  I just didn't feel that it was making a difference.  I didn't feel any better or worse than when I went on it and I just couldn't justify my co-pay and my insurance's $1500/mo payment for a drug that was doing nothing.  Well, it seems I was right.  So far (knock wood) there has been no consistent increase of pain and stiffness.  I have had several mini-flares but I believe that those were brought on by exhaustion.  I can't speak for you but in my body the more exhausted you are, the more pain you have and the more pain you have, the more exhausting it is.  That cycle has happened for me from the beginning and through every DMARD and biologic that I have tried.  My doctor asked me to consider Actimera but one of the side effects is liver issues and mine is already so damaged from MTX that even Tylenol causes my liver levels to spike so I am thinking no.  I think until I start to degrade and show consistently raised pain and stiffness, I will stay as I am.

     All of this has been very overwhelming.  I am getting through it and I am looking to the end of the tunnel.  In less than 65 days I will be in Tennessee with my puppies, my parents, my sisters and their families for a week and I cannot wait.  There's a lot to do before then (the end of buyback, Commencement, Summer 1 and then a store manager's meeting that I have to travel to) but I can see it.

     I think that once the initial craziness is over I will start working on finding more balance.  I need to declutter so that my house "feels better" in all aspects of my life.  So- if you have any suggestions- I am open to hearing them!
     

On Being Normal?

   
      So I am on my second bout of Bronchitis in less than a month. As I was told- I will never have a "normal" cold again.   It's my own fault.  At the tail end of the first one I jumped right back in to life (a little too soon) and when hubby got sick, I didn't "quarentine" myself by sleeping on the couch.  Add in my RLD and I basically did myself in.   I wanted to go to see my parents this weekend but that's not going to happen.  I am not subjecting them to my germs (Mama's been sick- I am not contributing to her getting sick again) and I am not goign to ruin their Valentine's Day by keeping them up all night hacking.

     What we did do though was go out and buy two new Vicks Humidfiers.  One for the bedroom and one for downstairs.  Hubby slept upstairs last night and before he went to bed he put in one of the Vicks Vapo Pads for the humidifer.  He seems to be feeling better today so perhaps it helped.  I napped for 5 hours yesterday so I couldn't get to sleep last night and ended up falling asleep on the couch.  I will try it out tonight.  Since I can't take anything that contains Tylenol any longer (due to the liver damage from the MTX- insert sad face here) I will keep taking my Alka-Selzer Cough and Cold with Bayer Asprin and drink lots of tea and water.

     So that's my abnormal cold situation that led to this contemplation.  Another lovely effect from the off-shoot RLD from the RA.  If I have learned one lesson in my almost 10 years with RA is that even my "New Normal" will change far more often than I will be comfortable with.  Each time there is a new diagnosis, each time there is a new limitation or restriction there is a new, new, "New Normal".  I find, running through my head fairly often "What IS normal?"

     I don't think I have EVER been normal.  I had a very un-traditional upbringing.  Being a military brat, while forcing you to be highly adaptive, is not normal.  Even though there are thousands upon thousands of kids like us- we each have our own situations.  You could line up a thousand of us and I doubt you would find two who were not sibs that had been in the same bases, in the same order.  It's about as different from someone who lives in one place their entire life as you can get.  I am also so blessed that I have a wonderful, loving family who actually enjoys spending time together but even that's not "normal".  How many people do you know who have good relationships with their parents, siblings, In-laws, cousins, aunts and uncles?  My only relationship that is "not great" is with my grandmother.  Most people I know from all different age groups are not as fortunate as I am with their family situations.  I give thanks for mine every single day.  

     Even within my own family, I was always the "weird" one.  My interests were and still are all over the map.  I am not the "brave one"- that would be Heather.  I am not the "sweet one"- that would be Lisa.  I am the..."curious one."  I want to see everything and try everything. I am the one who loves to try new food from all over the world- Seaweed is a tasty snack.  I am the one who read all about and researched all different faiths until I realized that it's okay to be "spiritual" with out an organized religion.  I am the one who loves all things Halloween, who loves a good scary movie, who loves to write and read and can fall down a rabbit hole on Google.  I am the one who read everything I could about Salem (and the Witch Trials) and spent many, many years heading down there for Halloween.  I always thought I would write something set there until I realized that most of what I write is non-fiction.  I am the one who has been known to change my hair color with my mood (I have been from Platinum Blonde to Jet Black) and my style on a whim.  I am the one who enjoys acting- from Arsenic and Old Lace in High School to my Haunted Houses and even consider customer service a bit of a show but I have not one ounce of artistic ability. I am the one who loves movies and tv shows based on comic books and crime dramas and Game of Thrones and horror and good comedies and has to have IMDB up so I can see who is playing what character and check out all of the trivia.  I am the one who is crazy about the New England Patriots and the Boston Red Sox. I am the one who is even more crazy about all things Harry Potter.  I am the one who lives for "Jammie time" and would be happy if yoga gear became the new "business casual" and siesta became the norm.   I am the one who loves every bit of music from classical to jazz to country, to metal to hip-hop to pop.  I am the one who treats my puppies like they are kids because I miss my kid like crazy. I am the one who is excited to be an instant grandma when Josh gets married next year because I don't believe in "steps".  I am the one who still wishes I had a pony- even though I know I couldn't take care of it myself any longer.  Speaking of which- thankfully, I am the only one who ended up with the autoimmune illnesses and in doing so I am the one who is learning to be grateful while I learn to live with the pain. I am the one who can live with pain FAR more easily than with exhaustion.  Exhaustion is my kryptonite.   The weird one- yep, that's me.

I saw the most true Meme today and posted it to my Facebook page.  It's me in a nutshell.

I have decided to just say "To Hell with Normal!"  I have decided that it's okay to be the weird one- because some of the best people are.  

Back to Work and Back to Spring Rush

    I don't know about you but it seems most of us have a rough time getting back to the daily grind after a vacation or time off.  The last two weeks have been lovely-ish.  We had "short" days at work, 8 hour days instead of 10.5 but only four hours a day open to the public- the rest behind the scenes.  We had a two day work week for Christmas week and four-ish (I worked Saturday) for the New Year.  Today we go back- and straight into extended hours.  From now until MLK day- it's time to fire on all cylinders.  The two hard parts about Spring Rush for me is that we go from end of semester (which is crazy busy) to the holidays to Rush again in a matter of three weeks and it's hard to go from up to down to up again so quickly.  The old body just doesn't do that as easily any longer.  It must be done though because this job provides the health insurance that covers all of the medical crap so- I will persevere.  One thing I have learned is that the key to perseverance is preparation.  

    How have I prepared?  I have bought a brace for my back since I will be on my feet all day every day.  I have made sure my RX's are all filled.  I have prepped easy to eat on the go foods (first part of this week: rice crackers and summer sausage, baby carrots and popcorn for lunch and snacks, yogurt with granola for breakfasts) and I have soup that I pulled from the freezer for when I get home late tonight and tomorrow night.  I have stocked my purse with Thermacare in case I need it, I have backups on on my Naproxyn and Flexeril "packed" and my clothes are planned out for the week.  The other half will fend for himself till the weekend and will help me take care of the dogs. The DVR is set for all the returning shows this week and next. I already have my grocery list going for after work on Saturday and have started planning what I will make on Sunday for meals for the next week. While I am at work on Sunday, I can count on Jim to wash and dry the laundry so I don't have to worry about that and I can fold on Sunday before bed since it's a mindless task that I enjoy.  I think I am as ready as I can be, all things considered.

    All of this will allow me to go to work, do the best I can, come home, snuggle pups and go to bed so I can get up and do it all again tomorrow.  Next week after we make it through the first two days of school I will start planning my recovery period over MKL weekend.  That will keep the light bright at the end of the tunnel.

Josh Shipp says "Perseverance is stubbornness with a purpose" and that is exactly how I am looking at this rush.  

I Had a Light Bulb Moment!

 

     When I am "haunting" I have a lot of time to think at the beginning of the evening.  Between makeup and getting into costume, waiting for the pre-haunt meeting and (being at the back of the house) waiting for the first groups to get from the front door to my room and then in between groups.  Yes, there are ambient noises but having spent as many years working in bars/nightclubs as I did- I can easily tune them out and almost meditate.  Unfortunately- I have not mastered meditation so my brain wanders all over the place- especially when I suck down two extra large coffees and already have a lot on my mind.

      As I was waiting this evening I was stretching a little and my arm did its "lets go numb" thing.  It instantly irritated me because frankly- regularly losing my strength and distinct tingling from my shoulders to my finger tips is getting old.  I shook it off after a few minutes and went back to "work".  A little while later it happened again and again and my frustration with it rose higher and higher.  About two and a half hours into the night we were back from a break and the tingling started to spread down my arm once again.  This time however was a little different.  I was relaxed from my break (and sucking back another coffee) and my end of the house was silent.  I was thinking about the herniated disc that's causing this problem and its counterpart in my lumbar vertebrae.  I considered that I have been battling lower back pain from the bad lumbar discs for many, many years now and this "falling asleep" thing in my upper body was fairly new. Rather than instant frustration a quiet thought slipped in.  "At least it's not pain".

     I actually jerked upright and took a step back for a second.  As the arm hung there in a full-on pins and needles state the light bulb came on and the thought seemed louder.  At least it's not pain.  I live with pain every single day.  Fingers, toes, hands, feet, knees, elbows, ankles, shoulders, back. Not always at once, usually bilaterally but not a day goes by that there's not some kind of pain.  The more I thought about this niggling little revelation I realized that the reason I have been so frustrated by this is not just that my body is falling apart.  I've been fighting pain and stiffness and loss of strength in my body daily for over 9 years now. I know how to deal with the pain.  I know how to medicate it, to compartmentalize it, to function with and through it and to give the stiffness time to work its way out so I can go about my day.

    No, the frustration comes because I don't yet know how to deal with this development.  What's really interesting is that while I was thinking this through, it came to me that this has been going on for longer than I wanted to think about.  I remembered talking to my sister over a year ago on several different occasions when I would be driving along and both my arm and my leg would go numb!  It's one of the things that I told the chiropractor at my early appointments and that's how we found of what rough shape my back was in.  It was an occasional thing and I thought it was more funny than irritating at the time but it was there.  When it clicked it was a "WOW" moment for me.  I pay a lot of attention to what my body is doing but this must have slipped by me until it got to the reached that that it was happening all too often to ignore.  At least it's not more pain.  I can live with this now, at least for the time being.  I will eventually have to decide if I can live with it long term or if I can take the time off that I will need to repair this latest insult to my body.  In the meantime, I have that thought to give me some peace of mind about the whole situation.  Now I know it could be worse. With that I can get some rest.