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.

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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.

Chipmunks And Me

When I was younger, I used to feed animals bits of crackers and such. If you were a duck or a goose, chances are I would throw the cracker your way.  If you were a squirrel or a chipmunk I would place the bit of cracker somewhere near me for you to come and nibble on.  I might also have nuts or seed grass pieces to hold out to you if you were cute and fuzzy.

My all time favorite to feed was chipmunks, you see I loved how they would pack all the offered food into their cheeks which would get chubbier and chubbier.  I guess back then I adored chubby cheeks, and to a degree I still do, just not on me.  And unfortunately as part of my lupus treatment I take a steroid called prednisone which just happens to give me chubby cheeks.  Well actually what it does besides giving me chubby cheeks is an incredible appetite, which results in the desire to eat all the time.  Eating all the time can lead to more than chubby cheeks.  And chubby cheeks on me are not cute, not like they are on chipmunks.  Thankfully I do not stay on prednisone all the time!

Sharin’ ‘Em

A while ago I stayed at a bed and breakfast which had the most amazing food and quilts. Not together mind you, but the food was some of the most delicious and simple food I’ve ever had and as for the quilt, well it was perfect in weight and comfort.

It was the kind of place that you want to share with someone, or maybe it was the experience that I wanted to share most of all with a certain someone.  At any rate it was a lovely visit that i know a certain person in my life would have enjoyed with me.

You see this person is an amazing friend, one I’ve unfortunately taken for granted at times, ignored at times and such.  She is one of the most incredible people I know.  When I told her about my diagnosis of lupus she went out and did her own research, not just to understand the illness, but also how to be involved in and incredibly supportive way.

The delicious food was something that I know she would have enjoyed and we would have had a wonderful time sharing and tasting things.  As for the quilt, well this lady makes the most amazing hand stitched quilts.  Anyone who receives any of her handy work (she does al types of amazing, creative things made with love) is truly lucky for they are made with love and that love simply wraps around you.

Without ever saying it, her support, her love and her positivity has always been open to me.  Sadly I’ve been too stubborn at times to receive or be open to her positiveness.  As I lack creative skills,I am unable to develop a quilt for her to let her know how important she has been in my journey in life with lupus.

Breakfast In Bed Anyone

I am not a fan of breakfast in bed.  To be honest I’m not a fan of any meal in bed, this may be a result of too many hospital stays.  And then again, it may be a case of feeling that where I eat should not be the same place where I sleep.

This doesn’t mean that I don’t eat in bed, obviously that’s the case when I’m staying over at the hospital.  And yes it is true, Beloved has served me breakfast in bed a few times as well as other meals.  I just don’t enjoy it as much as some people seem to like eating in bed.

it isn’t just because of the crumbs and such getting in your sheets.  You see friends, I don’t spend a lot of time in bed when I feel well.  When I’m in a horrible lupus flare however I may spend days in bed.  Those days pass by in a blur of sleep, pain and medications.

Perhaps it is because I’m a product of my upbringing where unless I was very ill my parents expected me to be up and about doing things.  Heck my mother subscribed to the theory of get up and get dressed because you will feel better.  Sometimes it works, sometimes I don’t even have the energy to get out of bed.  At best I pull a brush through my hair.

So why am I telling you all this?  Because recently someone told me they thought the most decadent thing in the world was eating breakfast in bed.  Now I’m sure she didn’t mean the jello cups that I get in the hospital, but I just can’t see how eating in bed is decadent.  How about you?  Has lupus ruined a good thing for me?