Friday, May 22, 2015

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

Tuesday, May 19, 2015

An Average, Ordinary Weekend. Thankfully

Last week was a very, very long week.  First week of the semester and I felt like I ran and ran and ran.  Thursday I worked my normal 8 plus some.  I went home as normal and then went back from 6-10pm.  By the time I went home I was practically seeing cross-eyed.  Thankfully I had Friday off.

I caught a second third wind driving home and stayed awake until after 2:30 catching up on NCIS:New Orleans and then slept until almost 9.  6 hours-ish and it felt wonderful.  No worries, no deadlines, no time limits.  I woke up, had a pot of coffee in my pajamas, caught up on more television (my DVR was dangerously full) and then showered and headed out.  I had a manicure and (much needed) pedicure then went to the grocery for dinner and Saturday breakfast.  I lay down for a while, I basically lazed the afternon away.  It was lovely.

When I woke on Saturday- and most of Saturday, I had to keep reminding myself that it was NOT Sunday.  I kept feeling the urgency to get all of my Sunday things done.  Jim wanted to go to a tattoo convention but instead we went on our "Vape Run" to the different shops.  They are such good people and so that's an enjoyable errand.  We came home and had dinner and then I sorted all of my greeting cards that I have to send while we binged on Bloodlines on Netflix.  It sounds silly but itwas just relaxing.  We stayed late and I slept until 6:30 in the morning.

Sunday was a good day too.  While we were out on Saturday we did the grocery shopping for the week so we didn't have to go as normal.  We rearranged our house a bit to give us some more room and then I read for a bit, catnapped for a bit and then did a LOT of laundry.  While I was doing that, I prepped my clothes for the week and hubby cooked dinner.  He smoked a brisket and then made green beans and potatoes to go with it.  Dinner was lovely, after cleaning the kitchen I cut my fruit and veggies for work tomorrow and then it was time for Game of Thrones.  I feel like I was miles ahead of a normal Sunday.  That also meant that I could sit and enjoy an extra cup of coffee and the news in the morning instead of prepping my lunch and snacks.

Why am I telling you all of this?  Because it was lovely to just relax.  I didn't know how much I needed it until I was in the middle of it.  It was one of those moments where you just say to yourself "WOW- I really didn't know how much I missed normal!" and then you give thanks a million times over.  I hope you had as lovely a weekend as we did!  

Monday, May 18, 2015

A Defining Moment

     In thinking about what I wanted to write today, my initial title was "The Day My Life Changed Forever".  Then I started thinking about it and there have been so many turning points that it wouldn't be right to choose just this one as THE pinpoint moment.  When you grow up as a military brat, change is not only inevitable but becomes a way of life.  I think that those of us who live a gypsy life tend to, as adults, either embrace constant change or dig in our heels, put down roots and abhor change.  I like to think that I fall into the former camp.  So when I reflect, I see a lot of "big" moments that turned my path from where I thought it would go, each of them defining.  That said, like getting married, moving overseas both times, each of my four (Rheumatoid Arthritis, Fibromyalgia, Rheumatoid Lung Disease and Degenrative Disc Disease) diagnoses, there was one big moment that changed my world completely.  That would be the moment that I became a mom.

     Twenty-eight years ago today, we were blessed with a beautiful, healthy baby boy.  It was not a surprise.  We had been married 15 months, we had made the decision that while Jim was active duty would be a good time to have a child, and we thought we were prepared.  Whoa Nelly were we wrong.  I was supremely, naively and arrogantly confident during my pregnancy.  After all, I was 19 and knew everything.  *Can you just feel me roll my eyes with that last statement?* We stocked up on diapers, we picked names, we got the house ready and when it was time to deliver- we thought we had everything covered.  I even had a quick and fairly easy labor and delivery.  We were still thinking "We've got this- no problem!"  Hubby went back to work as we were in the middle of an exercise on the base and I was wheeled away to rest while they cleaned Josh up and got him ready to face the world.

     Then, they handed me that sweet baby.  They put him in my arms, I looked down at him and thought to myself "Oh Dear GOD- I am totally responsible for this beautiful, innocent, totally helpless child!  Now what!?!"  I realized as I looked into his eyes that I knew absolutely nothing. I realized that I was not as grown up as I had thought just a few hours before.  I looked at his tiny fingers and toes as he snuggled in and nearly had a panic attack.  It was incredibly humbling.  It was scary as heck and it made me question everything I knew about where I was in my life.  It redefined not only the way I looked at the world but the way I looked at myself.

    It's been a lot of years since that moment but when I look back I am still flooded with those same feelings. I would not be wrong if I said we grew up together.  I know that we did our best to raise Josh despite just feeling our way along.  I am incredibly proud of the man he's grown to be so we must have done something right.  We will never really know but even now those doubts creep in and I wonder what I could have done differently.  When I think about him and reflect back on our parental years I can see things that I wish I had done, things I perhaps shouldn't have done and it causes me to question everything.  That moment is still defining me after all of these years.

     Happy Birthday Joshua.  At each phase of your life you have changed mine as we grew.  You have challenged me, you have changed me over and over and having you in my life makes my Grinch heart grow three sizes when I think of you. Thank you for being you.  Thank you for making me want to be a parent you could be proud of and thank you for sharing your life with me even now when you have a choice.  You are the sun in my sky and I love you dearly.

Wednesday, May 6, 2015

Acid Reflux and Chronic Illness?

       Readers~ I would love to get your input on this! I have been fighting heartburn/acid reflux for months now.  I am learning (and not liking what I am learning) what my "trigger foods" are and I know that part of the problem is weight gain but this is not a fun battle.  It keeps me from getting a good night's sleep because it kicks in as soon as I lay down and at least one night a week it's so bad in the middle of the night that I wake up coughing up the "acid" and have to sleep half sitting up on my couch if I want any rest.  I have talked to both my Rheumy and my GP.  Neither is surprised.  They have me on a daily Prilosec which helps a bit but I still go through at least a 25ct bottle of Tums Freshers a month.

     The weight gain is a significant issue.  I have been fighting it so long and nothing is working.  I swear, I could do nothing more than drink water for a week and I would gain 5lbs.  It's stressful, it's frustrating and it's disheartening.

    The other side of it is that the whole acid reflux thing really bothers me.  I don't know anyone who LIKES to vomit but when I am coughing and bringing up the acid, I just wish I could throw up and have it over with.  When I get up on the "morning after" my throat is just raw.

   I know that my meds contribute to this in a way- but I can't stop those without serious ramifications.  One trigger is overeating.  I have to be very careful and find that "full but not too full" line.  It also seems that sugar in the evening is another trigger.  Not so much during the day but if I eat a serving at night- it seems to add to the usual and make it worse.  Of course- spicy foods are not good and I seem to be getting more sensitive to spice.  I am actually writing this in the evening and will schedule it for the morning in hopes that it reaches you.  Tonight we had tacos for dinner.  Basic, one each Old El Paso taco kit which we have used forever.  I had shells, meat with the seasoning packet in it and tomatoes and 3 hours later I can't bend over to take the dogs off their leads without feeling the acid in my throat.  It looks like I will bunk on the couch tonight so I can half sit-up.

I would love to hear if you have had this issue too and how you solved it.  Thanks so much in advance!

On a happier note~  This blog has been voted one of Healthline's Top 10 Rheumatoid Arthritis Blogs again this year.  I am in great company (Shout out to WREN for making the list again!) and am so very honored since I have written so much less this year.  It's inspired me to get going again once I get through the madness.  Stop over on Healthline (link below) and see the other great blogs that they have chosen. 
rheumatoid arthritis best blogs badge

Monday, May 4, 2015

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!