Tuesday, July 28, 2015

Okay Friends~ I need you!

   Hi Friends~

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

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

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

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

Thanks in advance! 

Monday, July 20, 2015

Feeling Rather Overwhelmed

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

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

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

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

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

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

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

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

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

Monday, July 13, 2015

RA Inspired Tattoos-

From our friends at Healthline:

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

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


Monday, June 22, 2015

Weathering The Storm

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

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

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

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

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

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

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

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

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

Wednesday, June 17, 2015

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.  


Monday, June 15, 2015

I am A Medical Failure? #Fail

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

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

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

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

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

Friday, June 5, 2015

SO Frustrated.

WARNING- This will be rant-ish

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

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

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

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

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

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

Monday, June 1, 2015

"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! 

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!

Tuesday, March 31, 2015

My Hope

I created this post for my Facebook status last night but I want to save it as a reminder to myself when I am feeling persnickity so I am going to post it here as well.

I am currently 47 years old. In my lifetime we have seen interracial marriage legalized and the Civil Rights Acts of 1968, 1991, 2008 enacted. Yet we still haven't gotten it through our collective skulls that equal rights means EQUAL rights.

The second paragraph of the Declaration of Independence (you know, that little document drafted in 1776 that began this country) begins: "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." It does not say "All men are created equal EXCEPT..." or "as long as their idea of happiness coincides with mine."

Now, I figure I have 20-30 years left on this planet. It is my sincere hope that, before I die, we will finally see truly equal rights for ALL of our citizens- white, black, young, old, gay, straight, male, female. It is my hope that we stop with all of the hatred and treat one another with respect. That we stop trying to legislate other people's bedrooms, other people's faiths, other people's bodies and worry about leaving a great legacy for our children and grandchildren. Let's stop leaving a mess for our next generation and get to leaving an example of how to take care of our families, our neighborhood, our cities and our planet.

Tuesday, March 24, 2015

Ever-So-Elusive Sleep

    It was not a good sleep night.  I was tired when I went to bed but after the brain fog I had all day I was worried that I had forgotten something in my packing.  That made it tough to get to sleep.  Then around midnight Auggie was barking his face off to go potty and that woke Miss Harley too- so, back up I went.  I had slept just long enough that it felt like a good, solid nap, so there was no getting back to sleep.  If I wasn't traveling today I would have curled up on the couch but needing to be at the airport very early, my alarm was set for 3:15 and 3:30 anyway.  My silver lining is that I have been fairly productive.

Since midnight I have:

  • Consumed a pot of coffee
  • Took my meds
  • Got dressed
  • Applied the makeup
  • Curled the mop
  • Emptied last night's DVR
  • Played my Facebook games
  • Surfed the web. 
  • Balanced my checkbook
  • Answered work emails
  • Did some pre-work for the meetings
  • Made a list of ideas for upcoming posts here.  

And- there's still an hour before we leave for the airport.  I am traveling with a friend/colleague so I won't be sleeping on the planes and that's okay- it's just going to be a very, very long day as we will hit the ground running when we get there and won't be dismissed until about 9:30 pm.  Hopefully that means that tonight- I will sleep well.  If not- Lunesta, here I come.  I will give thanks for that option as well.  Insomnia is much easier to swallow when you know you have an ace in the hole if it continues.

On that note- I hope each of you got plenty of rest and have a lovely day!  Florida awaits! 

Monday, March 23, 2015

Slowing down?

Hi Gang!  It's been a busy, busy, busy few months.

     In January we had our "Rush" period at work.  If you have been following this blog for a while you know that I manage a college bookstore and Back-To-School is insanely busy for us.  I liken it to 3 solid weeks of "Black Friday".  It's just crazy.  I thrive on it but when it's over I deflate like a balloon.  

     Post-Rush I succumbed to the gnarly cold that's been going around.  The problem with that is twofold.  First, with a compromised immune system I am very lucky that it took as long as it did to "get" me but when it does- it's a real doozie! Second, with Rheumatoid Lung Disease  (note in the link that they also refer to it as MTX lung injury!) a common cold seems to go straight into Bronchitis.  It knocked me out for about two weeks, then hubby got it and was miserable, then he kindly gave it back. Thanks Honey! ;-)

     Then- the puppers needed to have their teeth cleaned and some teeth extracted which means they had to be put under general anesthesia.  Last time Harley had to have general she had a bad reaction.  It resulted in a trip to the emergency animal hospital and big meds and me coming home every few hours to give her a saline drip.  It was SO scary so this time I took three days off to spend with them after just in case.  Fortunately, they were both okay about 24 hours later (Auggie was high as a kite when he came home- it was pretty funny) with just a bit of bruising from the catheter and soreness in their mouths so we snuggled a lot.  The good thing was being able to just relax with them.

     In the midst of all of this work has been a whirlwind.  After rush we have about 4 weeks and then we start returning the books to the publishers in prep for the next semester.  It was also announced that we would be doing a huge systems upgrade (yay!) and that there would be 10 weeks of self-guided training on top of our usual daily work.  I have done my training but I also have to ensure that the staff does theirs as well.  It's been exhausting to say the least.  Next up- I fly to Florida tomorrow for our Annual Meeting.  People always say "Oh- rough life, going to Florida in March" but we are essentially booked from 7:30 am to 9:30 pm every day.  We only leave the meeting site for an event on Thursday night and even then we are shuttled back and forth.  The wonderful thing about the meeting is that I really, really like my colleagues and we only get to see one another at these meetings.  The huge bonus is that I get to room with my best friend.  I love and miss her because she's back in New England.  Phone, email and texts are great- but so very not the same.  I so very look forward with our two weeks together every year- the meeting and when she comes to visit in October.

     Oh!  And I started Physical Therapy for my back.  Can I just tell you how bizarre it is to walk on a treadmill under water?  That said- water therapy is not as grueling as "regular" PT so it's just a journey.  The therapist's goal is to strengthen my core.  My goal is to be able to walk a 5k without my back going into spasm and affecting my sciatic nerve when it becomes inflamed.

    The house is a mess, I am worn out and worst of all I hadn't been able to spend any quality time with Mom and Dad until this weekend- and if you follow Dad's blog, you know Mama has been sick, sick, sick.  Speaking of which, though my journey is toward gratitude in a "self-improvement" way- if you want to see someone who has gotten there in a faith-based way, you really should check out Dad's blog.  You can find it here.

     Looking at the calendar, it seems that mid-May should be our time to slow down a bit.  I know- it's about 7 weeks away but then the real relaxation will come in 101 days (on the 4th of July) when Mom, Dad, all the sisters and their families get together.  The only ones missing will be Josh, his fiance' and the kids.  Oh- did I mention that my baby got ENGAGED!!!!!!!!!  I am so very excited for them.  She is a wonderful young lady and brings out the best in him.  That's all I can ask but I get the bonus of really liking her AND two instant grandkids that I already adore.

     Well- this ended up longer than I thought!  That's what I get for letting life get in the way for so long.  As I close, I just want to take a minute to thank each and every one of you that reads this blog and especially those who have been on this journey with me through the ups, the downs, as I climbed and as I slipped back.  It is not easy to keep looking for that silver lining at times and even when I am not writing, knowing that I have you all behind me keeps me going.

Thank you from the bottom of my heart.  <3 p=""> 


Monday, February 23, 2015

An Interesting Article on Making Exercise A Habit- with Links.

There's a wonderful blog that I follow based on the book "The Happiness Project."  The author, Gretchen Ruben, has published three books on creating habits and what's really holding you back from being "happy".  I have gone back and read her first book several times and I always find something new.  I am very much looking forward to her latest; Better Than Before.

 Today, just as I was tossing around the possibility of joining Planet Fitness for the millionth time, this article from January 2013 popped up in my feed on Facebook so I thought I would share it here:

Want an Exercise Routine You’ll Stick To? Ask Yourself These 11 Questions.

Every Wednesday is Tip Day, or Quiz Day, or List Day.
This Wednesday: Want an exercise routine you’ll stick to? Ask yourself these eleven questions.
When I ask people what they’d like to do for their own happiness projects, they often say something like, “Exercise more regularly.”Exercise is very important for health and mood, and everyone knows this–and yet it’s often tough for people to stick to an exercise routine.
I think that one mistake is to choose a form of exercise based on a) what your friend recommends, b) what kind of change to your body you want to see, or c) what is the fashionable form of exercise. It’s helpful to consider these factors, but in the end, we’re far more likely to stick with an exercise routine that suits our nature and our schedule. If you’re struggling to exercise regularly, this is not the place to fight your nature! If you’ve been a night person all your life, vowing to get up at 5:00 a.m. to run isn’t very realistic.
Ask yourself these questions, and when you’re done, think about what kind of exercise routine would suit you best:
1. Are you a morning person or a night person?
2. Would you like to spend more time in nature?
3. Would you like more time in solitude; or more time with friends; or more time to meet new people?
4. Are you motivated by competition?
5. Do you enjoy loud music?
6. Do you do better with some form of external accountability, or does that just annoy you?
7. Would you like to challenge yourself with exercise (whether by learning a new skill or pushing yourself physically)–or not?
8. Do you like sports and games?
9. Would you like more meditative time, or more time to watch TV, read newspapers, etc?
10. Do you have a lot of control over your time?
11. Are you sensitive to weather?
Your answers should guide your thinking about exercise. Work out with a trainer? Take a class? Be inside or outside? etc.
For instance, if you’re a morning person who craves solitude and time alone with your thoughts, but has little control over  your schedule and hates feeling accountable to anyone, you might enjoy walking in a park every morning before you leave for work.
If you’re a night person who loves music and meeting new people, and is also motivated by accountability, you might like to take a dance-based exercise class after work.
Often, people will say, “Go for a twenty minute walk at lunch? That’s nothing. I really need to get in shape.” Don’t let the perfect be the enemy of the good! The twenty minute walk you take is so much better for you than the three mile run you never do. You get the biggest health boost going from no exercise to some exercise.
Just a little tweak in a routine sometimes makes a big difference. For instance, to exercise on the weekends, I go for a long walk. Generally, I like to think while I walk, but I do a lot of walking every day, and I found myself getting bored on the long walks–and so finding excuses to skip them.
One of my Twelve Personal Commandments is to Identify the problem. What was the problem? “I’m bored during these walks, so I don’t want to go.” For the first time, I bought myself an audiobook, and for the past few weeks I’ve been listening to The Golden Compass when I walk. It makes me so happy! I haven’t missed a day’s walk since I started.
How about you? What aspects of your nature and your schedule make it easier–or harder–to stick to an exercise routine? What works for you?
**Now, while this doesn't instantly answer my question about joining PF (I decided to wait to talk to the Physical Therapist about my physical limitations before Iplunk down the money) It does give me something to consider when it comes to the question of "Will I actually follow through if I DO join?' I hope that some of you find this helpful too!  

Wednesday, February 18, 2015

Why We Have Trouble Sleeping

     I have been up since 1:45 am.  I woke up with shooting pain from my hip to my knee.  It almost felt like dual charlie-horses.  I think Arthur was knocking on my lower limbs to remind me that he's still there.  I tried changing positions and stretching before I gave up, got up and literally walked it off.

     This type of thing has been a fairly regular thing through my journey so I didn't think much of it (other than the curse words I muttered till it ended) but when I sat down, I found an article from Arthritis Today in my inbox that addresses just this topic.  I read it and wanted to share it with you.

You can find the article here.  If you are like me, and insomnia is an "old friend" that pops up on a regular basis, I hope it gives you some insight,  Have a lovely day! 

Friday, February 13, 2015

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.  

Wednesday, January 28, 2015

Appearances Can Be Deceiving

      I was in two different...discussions (I don't want to call them arguments because they were mostly civil) this week in regards to disability.  Both left me very disappointed and a little hurt because of some of the remarks made by people of whom I thought better.  

     The first came because someone was complaining that their boss "played favorites" by cutting a co-worker who was going through personal issues slack and the person who was initiating the conversation was resentful that they had to do what they felt was extra work.  My first response was to pose a question:  
"I don't mean to be offensive- but you do know what this person has going on that may be causing the manager to cut her some slack? For example- I have medical conditions that are chronic and painful. I have learned to live with them but when they flare up at best I can manage to get to work and give customer service all day, There are days I can't lift a stack of 5 mass market paperbacks to save my life. There are better days when I power through a pallet of textbooks by myself. Just looking at me, you would never know and I don't update everyonebecause my medical issues are between me and my regional and I know that I give 100% of what I am capable of every day." 

 The immediate response behind me was:

They hired that person under the condition that'd they be able to lift a certain amount and do a certain amount. I think it's unfair if they have a medical condition. Why should you have to suffer. (I am a rotten human being, PS.)

My next thought was "Wow, so this person thinks that my fellow chronic illness people and I should just go away so we don't inconvenience anyone?" I said something to that effect and that when I was hired I was perfectly healthy- that the illnesses didn't start for several year and that when I am doing well I work my tailfeathers off to sort of "make up for" when I am not well- and that I don't feel the need to broadcast when I am not feeling well and why because it's between my boss and I and my medical issues are no one's business.  They replied that we (people with chronic illnesses) should just get a new job because it not fair to anyone else that they would have to pick up our slack.   I was even more dismayed when several other people chimed in with the same attitude along with sharing articles about "dealing with lazy-coworkers" and such.  Now- not everyone was like-minded.  That cooled the steam coming out of my ears but I had to walk away because until then I had not encountered in "real life" that attitude and I was too shocked to be civil.  

The second was regarding handicapped parking spaces.  The Today Show did a story on Facebook "Name and Shame" pages because someone left a note on a Coke truck parked in a handicapped spot to unload that said "Congratulatons!  You will be featured on the Disability Parking Wall of Shame.  Take care!"  Someone that I know casually replied that they see able-bodied people get out of cars in handicapped spots- what's the difference?"  A couple of people replied that not everyone who is disabled needs a wheel chair and one woman said "You may look at me and see a full-bodied person but not all disabilites are visible."  

There was a bit of back and for but to which the person I know replied" Well if you can physically walk and move around then no need for a permit!!!! There are all kinds of disabilities and some do not require a front row parking spot!!!"  to which I finally chimed in with:  "Actually- I have several illnesses that are chronic, incurable, painful and limit my mobility. While I may look great getting out of my car, I use the cart to lean on for balance and just walking around Kroger and standing in line can cause my joints to flare up and my back to go into spasm. Looking at me- you don't know that I am legally disabled, but I am and that's why I have a handicap plate on my car. I shouldn't have to tattoo my medical conditions on my forehead because someone doesn't think I look disabled enough. Many of us in the autoimmune disease community deal with this all the time- and it only adds to the stress of living with the diseases.

There has been no reply since so I am hoping that we made her think.  I was a little taken back though.  I have dealt with people like that in my real life so it was less shocking.  I just think what threw me was who it was coming from and how adamant they were.

Perhaps it's because I am taking longer than normal to "recover" from my Rush period; perhaps it's because I have been having more "I am so sick and tired of being sick and tired" thoughts of late but I seem to be more hypersensitive to the school of thought that if people are disabled they should just go away so able-bodied people are not inconvienced or that unless someone can see what's "wrong" with you, you must be trying to abuse the "privliges" that really disabled people get.  

I guess what I want to say is this:  Unless you know someone personally, unless you know what's going on in their lives, don't just look at someone and make a snap judgement.   It's no one's business WHY we have a handicapped plates on our car.  It's no one's business why we are allowed to take it easy at times.  Unless you want us to ask you about extremely private questions about your life, your medical history- don't expect us to divulge that information just because you decide that we don't "look disabled" enought for your tastes.