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..

Masking Disguise

As part of my studies when I was in school, I looked at older cultural relationships with the unknown and spiritual world.  One common theme among all the cultures I studied (which ran the gamut from early North America and Europe to the San people), was the use of masks.  Some cultures made masks of clay, others of wood and still others used forms of paint to build masks upon the person’s face.

Typically these masks represented a being or type of goddess/God, but sometimes the masks were designed as tools to work with the known or unseen.  If the mask was used as a tool it might be designed to scare away evil beings, or perhaps help tie souls together again.  Always, regardless of the function, the masks hide the person’s face and to some degree his/her personality as well.

Over the course of my studies and continued research I have collected numerous images or copies of these masks and many have adorned my walls at various times.  Even if you don’t believe in the power some ascribe to the masks, there is something magical about them and the way they look.  I used to rotate out my “weather” masks.  When I wished for cooler rain I’d bring out the appropriate masks, not because I necessarily thought they would make it rain, but rather because they suited my mood. (In all my research  I’ve personally never seen a mask bring about a shift in weather or fortune; typically there is a ceremony or dance associated with the mask’s intention.).

As some of you know this has been a rather trying month for me with lots of changes and upheaval taking place.  These aren’t the every day upheavals either and there have been a few of them that have left me wondering if I had reached the bottom of a pit.  (I rather suspect the bottom of any out is what we make it to be and of course there is a real possibility that if one isn’t careful the pit is in fact bottomless.)

Most people though wouldn’t know about the upheavals or changes just by looking at me because I too wear a mask.  My mask gives me strength and confidence when both are flagging. My mask makes me look less vulnerable to outsiders.  My mask is meant to scare away lupus while insisting that people do not pity me.  So far the scaring off of lupus has been an utter failure; the look has worked at keeping people’s concern and such st bay.

The thing with wearing my “scare lupus” or “make lupus fear me” mask is that it comes with a price tag.  A price tag that I have often failed to check before donning my mask.  You see in my research I learned that in order to tap into whatever power it is that the mask wearer seeks, s/he must give something up in return.  In my case it’s energy and positive feelings.  All too often I’ve reached for my mask and not stopped to consider the price of wearing it.

In some cultures when the mask wearer does not hesitate to continually give up a small piece of him/herself that person is deemed to be corrupt by the community.  You see when you continue to give up or give away something in return for a power it means that the power has corrupted you or at least blurred your vision and judgment.  Somewhere along the lines I took up my battle with lupus while wearing a mask that promised to keep the illness at bay.  I started wearing the mask in the belief that if I looked strong enough a lupus flare could be avoided.  For the record taking care of one’s self and working with one’s medical team is what helps avoid flares.

It almost came to the point where I don’t know what I looked like before the mask because it had become such a habit.  But the mask hasn’t helped avoid the flares and I’m tired of being tired and looking strong when I feel anything but that.  I’m tired of paying an unnecessary price and so I’ve been working at not putting on my mask all the time, waiting until the mood hits me to wear it.  And I’ve discovered that by letting go of or at least loosening my tight grip on needing to be so tough has given me renewed energy and opened up my eyes to other opportunities.

I still have my mask for when I want it to feel strong or secure, but I don’t need it to be strong.  I am strong.  I am a lupus warrior, and these days I even smile!