Quick UPDATE on my craziness.

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

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

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

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

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

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

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!     

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!  

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.  

"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

Well, this is an interesting development

I have been overdoing it.  I know I have, I push myself too hard.  If you have ever read the Tao of Pooh, I am a classic Tigger.  If you have not- here is what Benjamin Hoff says about Bouncy Tigger: 

"A fish can't whistle and neither can I." There's nothing wrong with not being able to whistle, especially if you're a fish. But there can be lots of things wrong with blindly trying to do what you aren't designed for. Unfortunately, some people aren't so wise, and end up causing big trouble for themselves and others. The wise know their limitations; the foolish do not. To demonstrate what we mean, we can think of no one better than Tigger, who doesn't know his limitations ('Tiggers' can do everything'), which brings him in lots of trouble.

Having overdone it these last few weeks, I am starting to pay for it.  Knees, hips, right wrist and elbow joints  have been talking to me all week along with the attached muscles.  This morning, I rolled out of bed-very slowly- and made my way down stairs with the intention of coffee and then heading in to work for a few hours.  As I sat in my chair to wait for the coffee to brew I felt like a giant walking bruise with throbbing bits here and there.  When the coffee dinged, I went in and attempted to pour that pot.  As I lifted it, pain shot through my arm and I started to shake. This is a new flare symptom for me- the extreme weakness and instant shaking on top of the pain.   It took two hands to get the coffee into the cup.  That doesn't tickle when you have one hand on a hot pot to steady it but the heat did serve to loosen my left hand a bit.  I drank my coffee and took my meds, hoping it would settle the pain enough for me to get to work. 

I drank most of the pot of coffee and waited longer than I wanted before heading out.  The next two weeks will be absolutely nuts (I anticipate 6am to 9pm on many days) so I stopped at Target last night to get granola, new snack bars and cereal and on my way this morning at Kroger for greek yogurt and bagels to stock my space at work as there won't be time for anything other than meals on the run.  I carried the yogurts and bagels to my car and had to sit for a few minutes to stop the shaking before I drove.  I made a quick stop at my local gas station (the only place in town that has my Dunkin Donuts coffee) and had to use 2 hands to carry a 24oz coffee on the car.  It was at that point I gave up.  I sent a text to my assistant manager who was going to try to come in after church and family obligations today to help me and told her to not bother, that I was hurting and was taking the day off.  I went ahead to work and dropped off all of the food (it took several trips) and headed in to Kentucky for cigarettes (don't judge) for hubby and I and that cemented my decision when I couldn't hold on to a cup of ice with my right hand. 

I came home feeling quite defeated, to be honest.  My body is once again betraying me this time in a major way.  I feel like I am too weak today to do much of anything today.  I have watched two episodes of Alphas while I sent an email to a friend and wrote this post.  Hubby has take a couple of bags of my magazine articles upstairs for me and I am heading back to my bed to relax the rest of the day.  I am going to sit on my bed and go through the articles I have saved and watch movies.  I figure if I am somewhat bed bound I can at least get some of the articles I want to reference in the future in binders.  At least that will be productive.  Later this evening, when I make my way down to have dinner, I will email my office with a to do list for tomorrow.  I am thinking that since today was all about doing "clean up" on things my staff was supposed to do last week- this will be a good opportunity to hold them accountable since I cannot physically do it myself.  

Before I sign off and head upstairs- a list of a few things I am grateful for today so that I can get out of my own head and stop letting this make me think unproductive thoughts. 

1-  That this happened on a Sunday, so the store isn't open and people aren't counting on me to be there.

2-  Cable TV- to keep me entertained while I confine myself to my bed.

3-  That hubby has plans today.  He's leaving shortly for a golf scramble for work so he won't be either wanting to go do things or hovering over me. 

4-  That I didn't tell him that because I do appreciate him but I just feel like "licking my wounds" alone. 

5-  Birds-eye Steam Fresh Lightly Sauced Brand.  Their Rigatoni and Veggies in a Tomato and Parm sauce will be an easy, healthful dinner this evening. 

Now- I am off to lay in my bed and hope my body cooperates with this enforced day of rest.  That way I can get back to the salt mines and be useful tomorrow and through the rest of my rush.