A Walk In The Park

Five or six mornings a week I go for a long walk around sunrise.  The four-footed one was less than thrilled when I started this routine, but she seems to enjoy the different smells that are present this time of day.  I secretly think she enjoys the fact that the birds are a bit more sluggish and therefore easier to chase at this early hour!

I enjoy the stillness of human activity while we walk.  A lot of mornings the only sounds and beings we encounter comes in the form of birds, squirrels and such.  People on bikes or driving cars form the last part of the scene, the portion where we are almost home.  This sudden onslaught of people reminds me just how noisy humans are.

Most mornings I look forward to reaching certain points on our walk so I can take pictures of what nature generously shares with me.  However some mornings I don’t look forward to these pauses the same way.

Some mornings I see each of these stopping points as a goal to reach.  On these mornings I don’t measure the walk as whole, instead break it up into se stopping points and remind myself that if I really cannot do it, I only have from the stopping point to home rather than the full walk.  I try to not have too many of these mornings because they mean pain, stiffness, exhaustion and all the other fun things that come with a case of flaring lupus.

On a few of these lupus mornings, I cannot even enjoy what nature provides, I can only focus on one foot in front of  the other.    Thankfully those morning are few and far between.  Unfortunately the mornings where I can ignore my health and focus solely on nature are never as many as I wish for. But each morning is a new opportunity.

Blossoming Idea Thanks To Lupus And People

I was looking at the flowers in the garden today and realized they are “safe” flowers.  They are flowers that I know do well and don’t mind if I don’t get around to watering them.  They tolerate my neglect at times just as they tolerate my attention at other times.  These flowers have proven over the years that they will do what flowers do regardless of my attempts to nurture them.

I enjoy the brilliant pops of color these flowers bring to my garden.  I also enjoy the way the different perfumes mix and mingle as I make my way through the garden.  But at the end of the day the reality is these are the same types of flowers I use each year.  

I’ve wanted to add other flowers to the garden, something a little more daring.  But I know that not all flowers will tolerate the area I live in, just as they wont all tolerate my moments of attention and inattention.  So I have played it safe, dreamed about bringing them into my garden, but nothing more.  I don’t actually want to be responsible for the death of innocent flowers and plants!

I’ve mentioned my wishes to a few people, including my specialist and each has suggested I try at least one new flower or plant.  As my specialist said, “most of what medicine has discovered is through trial and error”.  He suggested that I look at new plants or flowers a little like a “clinical trial”.  My specialist is helpful that way!

The truth is I let my need to be in control, due to the uncontrollable nature of lupus, creep into my garden.  I can, however, view my garden as a place of healing and nurturing my health.  And I can use my experience with lupus to see what the next option is to try, to see what we can add to the garden with e highest possibility of success.

Lupus Interrupt-us

The four-footed one stretched her legs before curling up tightly against me as if to tell me that staying in bed was just fine with her.  She tends to do this when there isn’t another human around to take over this task.  Perhaps she should do it even if there is a human around because I’m more inclined to listen to her.  There’s just something about her soft, warm body curled up against my tired, hurting body that works like magic.

So we stayed in bed, well her own the bed and me under the covers for a little longer than sunrise.  And we missed Beloved’s phone call which came shortly after the sun had risen.  We called him back later on, when we decided that staying in bed wasn’t going to make a difference.  We told Beloved that very thing, no need to be in bed to rest when we could just as easily rest in chairs and such.

When we had gathered enough energy, while to be honest when I gathered up enough energy as the four-footed one always has energy to spare, we headed to a comfortable chair for a snack and a nice book to read.

A nice lazy day?  Perhaps to some, but to us a day when lupus interrupts our routine of a sunrise walk, an enjoyable coffee and open to whatever adventures the day brings is more what it was.

In The Garden

While sitting in the garden trying to feel somewhat rested after a long, sleepless night, I managed to enjoy some of the glorious perfume from the flowers all around.  A light breeze picked up the lovely scent of the neighbor’s lilacs and then when the breeze shifted I was treated to the smell from a different neighbor’s flowering shrubbery.

My four-footed companion had decided that since we were sitting in the shade with all the flowers which is isn’t supposed to walk in or chew upon, the best plan was to catch up on her missing sleep.  She’s a light sleeper so at the best of times she’s up on and off throughout the night, with me up in pain and feeling unwell she got no sleep and was going to take full advantage of every opportunity she could to catch up.  Given that she also wasn’t going to leave my side this meant sleeping in the garden right near my feet.

I noticed that the lawn needed cut and tidied up.  I also took in how the winds had blown petals and not what into all the little crevices and corners, something that in the past I’d make quick work of with a proper sweeping.  But today I could only take in the sights and make a mental note which I hoped would stick in my memory until I felt I could get around to taking care of everything.

One of my new neighbor’s commented on how it just be nice to just have a lazy day and ignore the yard work.  Now we all like relaxed days once and awhile.  When the weather is good and there is no schedule to keep who wants to be faced with  list that never seem seems to end of chores that need completing?

I suppose I could have explained my situation to this neighbor but the truth is I didn’t feel like having a discussion about how my health had limited the amount of energy I have.  I could have come out and told this person I have an invisible illness, or even said I had lupus, but I was too tired for all of that.  So I simply said that now and then it’s nice to just enjoy things as nature presents them to you.  Nature brings us all sorts of gifts and too often I am to our use to notice or feel I need to perfect that which nature has provided for me.  I forget that not everything needs to be neat and tidy.   I guess if you were to ask I’d tell you it is one of the lessons lupus has taught me and continues to remind me…take time just enjoy the sights and smell so a they are provided because nature perfects things in nature’s own way.

Late For The Tea Party

I was late for a tea party today.  Not just a little late because I had nothing to wear either.  I was late by hours, as in the party started, ran and finished before I could even consider going to it.  And yes it was a party I wanted to attend.

Thankfully a friend attended and managed to bring me back some of the tea I wanted to try!  And she was able to tell me all about the party as well, which was also nice.  You see the tea party was also a tea tasting and I’m always looking for ways to curb some of the side effects of my medication.  I’ve found some fruit teas that help with some of the issues so I was excited to try more.  And I’m blessed to have a friend help me with this.

I hadn’t planned on being late, the only thing I had scheduled in the day besides the tea tasting party was a doctor’s appointment.  And it was this appointment which was scheduled hours earlier than the tea party that created the issue.  Or rather it was my doctor’s decision, he insisted on “just one quick little test” which he swore would be easy and not result in needing anything more to be done.

He was wrong.  His test resulted in a trip to another department in the hospital, I’m,existent which meant more testing and medication.  Oh yes and a scan that required radioactive dye to be injected into me.  The dye needed time to travel everywhere it needed to go so I had to wait an hour or so and then hop in for the scan.  Needless to stay I was at the hospital the majority of the day.

I texted my friend to let her know I wasn’t going to be able to meet her as I had finished a rather long day and just needed to go home and nap.  She stopped by later on with the tea and the stories which helped keep my mind off the test results and the day in general.  Sometimes lupus is like this, no it isn’t all fun and adventure, some days it’s just hurry up and wait.

So Tell Me What You Really Want

I used to want a chair that reclined allowing me complete relaxation.  Thst was before I knew how much time I would be spending in chairs like this.  Now that I spend at least three days a week in these types of chairs for at least an hour or so, I’m not as keen to have one.

I used to want a bed that I could raise and lower, for those days that I wanted to read in bed or watch tv. That was before I spent a few nights in one of those beds.  They aren’t all that comfortable.

Lupus has afforded me the opportunities to frequently try out the reclining chairs when I’m receiving various treatments, some of which involve chemotherapy.  Lupus also gave me an invitation to spend a few nights in that type of bed I thought I wanted.  My stays at the hospital have proven that those beds aren’t for me.

What I have manage to take away from all the time I’ve spent in reclining chairs and beds is that I spend enough time reclining while at my medical appointments.  I don’t need to be reclining when I’m carrying on with the more mundane and “normal” life activities.  And for the record when I bought my chair and sofa I made sure that they would provide comfort and support for those days that felt like medical treatment days!

Learning Always Learning With Lupus

One of the lessons I learned after spending so many years in school is that just when you think you fully understand a subject, you discover some obscure fact that leads you down another rabbit hole of learning!

Lupus also ensures I am reminded of this lesson, sometimes by making me juggle symptoms and specialists.  And other times just when I think I understand my relationship with lupus something new comes along and forces me to reflect and reassess.

Today I was reminded of this lesson again, this time from an insurance company that decided not to cover my medical claim because the medication I was prescribed is not listed as being used for lupus.  My doctor prescribed the medication as an off-label means of managing my lupus symptoms.  The insurance company decided that I don’t deserve to have this medication covered as my doctor clearly doesn’t know how to use the medication as it was meant to be used.

Although countless people have lupus, after all it is the leading autoimmune illness, we still do not have a lot choices or options when it comes to medical treatment.  There is still a great deal to learn about lupus, which in turn leads to discovering new means of managing and possibly curing this illness.  Let’s never stop learning, let’s never give up until we have the answers and a cure!

Acting Is Hard Work

Ask any actor what it’s like to be “on” for hours at a stretch and they will tell you it’s hard work.  Some days you just don’t want to be all sunshine and rainbows with smiles all around.  Those are the days that are really hard because you still have to be sunshine and rainbows and smile like it is the most natural thing to do for hours.

I know this because I too am an actor.  No you’ve never seen me on he big screen, I’ve never even slide across your television screen.  The last time I was on stage it was to deliver a speech about possibilities and opportunities not a soliloquy from Shakespeare. Never the less I, and countless others, am an actor.

I didn’t even audition for the part, it just fell into my lap, sort of.  Knee pain, lap, let’s not quibble over such a small thing.  You see when lupus decided to share my life, I decided to become an actor mostly so loved ones and friends wouldn’t worry about me.

My acting skills have advanced from faking a smile and saying I’m fine while I’m in a horrible flare to hiding limps, stiff joints and rashes.  I decided I needed those skills so coworker’s and bosses wouldn’t decide I was unable to be in the workplace.

I’ve acted as if I haven’t a care in the world as it felt like every bone in my body was crumbling.  I’ve walked up flights of stairs without people ever becoming wise to my swollen, aching knees.  And I have danced dear readers when all I really wanted to do was to curl up in a corner and make the pain stop.

Lupus also helped me develop my slapstick side, unintentionally. These days I’m more prone to slip into a bit of slapstick simply because there is no stopping a fall when it starts, nor can a girl defy the laws of gravity while she is on earth (at least not this girl).

I’ve  come to realize that all this acting is not doing what I had hoped.  It is in fact a disservice to others struggling with invisible illnesses such as lupus.  A friend who also has lupus used to marvel at how I carried on throughout a full day.  She called me strong and brave for working despite feeling like hell.  The truth is, that’s not strong, that’s fear.  What this acting does it makes it harder for healthy people to understand what lupus is really like.

So im retiring from acting, but I can’t promise that I won’t slip into it now and then.  But I’m tired of acting one way when things really are another way so I’m taking a final bow of sorts, wiping off the makeup wnd allowing myself and lupus to be what we will.

Wasn’t Ready, Not Really

Call me Disaster-on-two-legs.  Pleased to meet you!  Hope you don’t mind if I just take a seat here, hopefully near nothing breakable or such! 😉

Okay so I’m not really called Disaster-on-two-legs, but if the shoe fits!  And having a chronic illness such as lupus definitely helps the shoe fit a bit more.  Now to be honest I’m not always liable you break your fragile wares.  And I don’t always spill stuff, certainly not the staining kind.  It just seems that lately I’m doing more and more of the disaster type stuff.

Most distressingly for me is at these things are no longer confined to the privacy of my house or the house of ones.  Oh no dear readers, I’m capable of spilling staining liquids on the general public as well.  I know this because just today I spilled a full cup of delicious iced tea all over three perfect strangers.  I also managed to drop a plate on some poor man’s shoe. This was all before ten this morning.

Who knows how many disasters I could have helped create before nightfall if I hadn’t gone home and basically stayed way from everything.  Now deep down I know that I’m not really a disaster or such, but some days when my lupus is flaring too much I can’t help but feel that little niggle.  The niggle that reminds me that I have to do things differently sometimes because I’m not the same person I was before.  It’s okay, these changes, after all most people must deal with the changes of aging.  My changes just happen to be a bit different and watch out general public!

When Too Much Used To Be Fine

The four-footed companion doesn’t understand the concept of “too much”.  As in too much heat because it was beyond war mush today.  Which leads me to the next too much which was too much sun.  Too much sun isn’t good for me, is great for making lupus worse, but my medications have rendered me so sensitive to the sun that when I have too much I swell up and go an odd pinkish purple.  Call me the human puffer fish during those moments.

Now to be fair, the four-footed one found plenty of shade, that which was cast from parked cars and such.  It would be fine with me if the shade provided by parked cars covered more than my feet and ankles.  With the majority of me exposed to the sun I tend to rely on sunscreen and clothing with sun protection.  It also means that I tend to be covered from wrists to ankles.

So today was a day of too much because the weather forecast indicated cloudy and so I packed different clothes for this trip.  And thus it took only a short period of time to reach my too much threshold.

I wasn’t always like this, I used to enjoy the sun and the heat and never grasped the concept of too much sun or heat.  Sure I still wore sunblock but I als didn’t find myself relating to Dracula as much as I do these days.  There simply was no such thing as too much sun or too much heat, rather they were just glorious days. I miss those days..