Kick Off Your Shoes

At a recent doctor’s appointment, I was invited to “kick off my shoes and stay awhile”.   Now I don’t mind this doctor or his staff, however I’m not really wanting to get comfy in the doctor’s office for what should be a wee visit.  I guess that’s a bit rude of me.

I didn’t kick off my shoes, but I knew I was going to be there awhile regardless of my shoe status.  So I settled in for a long wait and a long visit.  And true to form after a lengthy wait, the doc and I had a long visit.  A long visit with lots of medical terms and numbers.  Not exactly my idea of fun, but a requirement when you have a chronic illness like lupus.

And after my long visit, I went on a longish drive to empty my head.  Because sometimes  when you have a chronic illness like lupus, you need to just empty your head and simply enjoy your surroundings.  A long visit with a four-footed friend is also ideal.

And I promise things will go back into your routine after one of those visits, because it does for me too.  Until the next time I am invited in for a long visit without my shoes.  Which is all part of chronic illness and life.


All In The Hands

As he looked at my bluish fingers he shook his head and sighed. My specialist had called me in for a “meeting” after my last wee visit to the hospital. I am loath to go to the hospital and get a sinking feeling every time they tell me I get to “sleep over” because I’m just not that into hospitals. Except I am because I have a chronic illness that doesn’t want to behave.

After my last stay, a follow-up message was sent to my specialist indicating that I had some vascular issues in my hands. Lupus is one of those gifts that just keeps giving and one of the gifts it always provides me with is something known among my friends as corpse hands. To the medical community it is known as Raynaud’s. To me it’s just cold hands for the most part, occasionally brilliant red and sore fingers, but mostly purplish blue and cold fingers.

The doctor who wrote the follow-up message thought that perhaps if my specialist addressed my Raynaud’s (I guess we will move on to using formal words for proper addressing of said entities), I would not have been in the hospital as long while they tried to resolve my cold hands even though I told them that’s just the way things are.

When he looked up my specialist said, “sometimes you pick your battles and other times the battle picks you”. The cold hands aren’t in my head, there is a medical condition for this and there are things that can be done and are being done to try to keep it in check. However, not everything gets tidied up nice and neat at the end of the day. Lupus doesn’t play well with others and so we have to balance all things for the best outcome. Which for me may mean cold hands most of the time.

Going Through Hell or Insurance Companies

Sir Winston Churchill supposedly said “when you are going through Hell, keep on going”.  I guess he decided Hell was not a place to stop, rest, do some sightseeing and basically get trapped.  Pity I heard about all of this after I made my foray into Hell.  Or as I like to call it Insurance companies claim departments.

Seriously, if you have a chronic illness like lupus, and take medications such as I do, you inevitably end up in Hell.  It’s starts off with a simply phone call, afterall surely they have misunderstood something or made a mistake while processing your claim.

When they put you on hold the first time, you descend a little further into Hell.  No amount of breadcrumbs dropped as a trail will help you.  This is Hell after all. And the fun is just beginning!

After the first hold there is the questioning about if you really need the medication and such.  And then the transfers and demand for further paperwork.  And down you go, further into the one way path in Hell.

If you are lucky some of the required paperwork will have to come from a doctor or specialist.  These are the people who can rescue you from Hell.  But it may cost money and of course the deeper the level is that you happen to be on, the more it will cost or the longer it will take you to get out.

Perhaps instead of going through Hell you could get a pass, after all you are dealing with a serious chronic illness.  Surely that is more than enough.

I Wonder…

I wonder what it’s like to be full of energy.  I would jump out of bed, easily accomplish everything I wanted to do, go to work and keep up with all the adventures the four-footed one wants to take.  I’d marvel at how much one can do in a day.

Of I haven’t jumped out of bed in years.  And I have no clue what I’d do if I got done everything I wanted to within the day.  What on earth must it be like to not have a list of some sort just waiting for you to get to?

I used to be that girl, the one who had a far amount of energy.  I used to be that girl, the one who could easily tick things off her to-do list, or be up for a visit with friends.  (Granted there was still a limit to how much energy I had.)

But that was before.  Before lupus demanded attention.  Attention and energy.  Lupus is selfish that way.  You may have a mile long to-do list but lupus doesn’t care.  When lupus wants you to stay in bed, lupus makes getting out of bed super hard to do.

I used to think my dishwasher, the machine rather than a person, was a nice-to-have item.  Since lupus I’ve come to the conclusion that it is a must have.  I only ha e so much energy and strength and I rather not spend it on dishes when I could be spending it with people I enjoy.

I wonder what it’s like to love someone so much and watch the, struggle with a chronic illness like lupus.  To watch them struggle to get only some of the household chores accomplished.  To have to pick up the slack for that person.  I wonder how Beloved does it, and does it so easily and gracefully.  I wonder how he doesn’t get upset, surely he just resent lupus at times.  And yet he just keeps going, like he Energizer Bunny.  And I, while when I can I struggle along or let him carry me along.

Sometimes Faking It Won’t Result In Making The End Result

I spend a good portion of my time and energy pretending to be something I’m not.  I try to be like a healthy person and I’m not.  News flash, no matter how many times I fake it I will never make myself into being healthy.

I know dear readers we have had this type of conversation before, and if you are fortunate enough to healthy you may not get this.  Today while having a conversation with a friend in a restaurant, our waitress decided to offer my friend, and inadvertently me, this lovely gem of advice that if you fake it till you make it anything is possible.  This includes dealing with chronic illness according to this waitress who clearly has a medical degree as well as working in the restaurant.

So if one fakes being well one will simply become well according to her theory.  Believe you me, if it were this simply there would thousands of people with chronic illnesses and serious conditions on this band wagon.

Lim not sure why people who know nothing about me or my condition think they have the right to offer me unsolicited advice on what to do to get back to normal.  It is a bit like this:  let’s say you invented a widget machine; it is your pride and joy, you live for this machine.  Now I come along knowing nothing about widgets or machines, but I tell you what you need to do to make it work better.  You’d laugh at me, throw me out of your building and have a great story to tell.

With chronic illnesses like lupus I’m on the one with the widget machine and some stranger comes over to me and says things like:  it’s all in how you view things, eat a healthy diet and avoid X, or have you tried Y it worked for my aunt when she had a cold. When I try to tell the stranger to get out of my shop the stranger gets offended and makes a comment about me not trying to get well or wanting pity.

So here’s the thing, just because I have lupus it doesn’t give people a free license to offer unsolicited advice.

Too Hard,Too Iffy, Never Too Easy

Some days are easy like a nice summer breezy.  Some days are hard like the rough ground in a dried-out, abandoned yard.  And some days are in between.  The trick is to ride the breezy day as long as you to help sail across some of that hard ground as you move towards another gentle breeze.

If you have a chronic illness you may have just read that last paragraphs and rolled your eyes (I heard eyes roll!) and thought “easy to say” or “excuse me, there hasn’t been a breeze this way in a long time”.  I get it, I really do.  Hey, I have a chronic illness too and have to cope with this as well.  And I do understand that sometimes no matter what you do, or don’t do in the case of resting, there is just a lot of hard ground in front of you.

On the in between days I’ve started to most a little more attention to my diet, exercise and rest.  Okay so it’s a bit more than just paying attention; I’ve been keeping track of all the details in hope that I will find a key that keeps me in the path to the easy days.  So far the data I have looks like a pile of tangled spaghetti.

Not being educated with a medical degree, I have also shared al this data with my specialists.  Soemtimes what appears to be a tangled mess of spaghetti makes perfect sense if you just know what you really happen to be looking at.  To date it appears none of my specialists can read the spaghetti.

I suppose I could just drop is and ride the currents of the river known as lupus, but I have this weird thing about being in control or at least being able to read the direction I’m headed down. So I will continue to gather data, continue to work on moving away from the hard and over to the easy.  If any of you already have some tips or tricks for making this work, please let me know!

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.