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!