Not moon face….sun face.

Forgive me readers, it has been 3 months since my last post.

I have been sick you see (surprise, surprise, bet you didn’t see that coming).  But I shan’t tire you with the details about that, because I have made a recent discovery…..and here it is…..

To anyone other than me, its actually boring, B O R I N G.   The details about injections, drugs, latest conversations with the cardiologist and treatment plans, let alone how my body has been reacting to the latest immuno suppressant….BORE  RING.  I watch as their eyes glaze over and the frozen expression of interest is carefully arranged on their face in order to try and disguise the inner conversation they are probably having……. “right…here she goes, probably shouldn’t have asked how she is….hmmmm….should have at least 10 minutes to figure out tea tonight… maybe a lasagne…oh god no, too much cheese, got to stay away from fats…healthy eating, …shit, what did she say again….I’ll nod and look sympathetic”.

And honestly, despite how that last sentence sounded, I really don’t blame people in the least.  Goodness knows I’ve done that exact same kind of thinking myself…..I can’t deny that for a moment.     I actually think it’s fair enough that they find my descriptions about how I’m really doing with my disease boring….because why wouldn’t they?  It’s not happening to them, it’s not their body.  My disease is my journey, it’s isolated and lonely, because it can’t be otherwise. It’s my body. No one else travels around in it.  Just me.  And anyway, who in their right mind would want to have an intimate conversational connection with my small blood vessels or gastrointestinal tract?  That’s just kinda gross, and also a little bit weird.

People are now beginning to avoid the question….that was my first clue that I may need to modify my responses.  And also to stop phoning people or adding into the conversation information about my latest doctor’s visit or flare up experience ….too much information, not relevant or “connectable” to, and how honestly are they supposed to respond?.  I’m actually starting to feel sorry for people!  Anyway, I’ve managed to formulate some responses that are more appropriate and also SHORT.  Short is good.  I’m still perfecting these sentences as I don’t want to outright lie about things in order to respect myself and what my life is really like.  But I have managed to gather two or three replies now.  So far I’ve got the following…..

“couple of recent challenges but no, pretty average thanks” (then quickly move onto, hows things with you?)

and

“Yep, chugging along! Hows about you?” (again moving onwards quickly) .

However I’ve managed to stumble onto a real winner! And people LOVE it…..it goes like this “A few struggles” (and here’s the clincher) “but trying to stay focused on the positive”   It’s fabulous, that bit.  It’s kind of like offering them one of those floating orange and white rings they throw to people who have accidently found themselves in deep water and struggling to get back out.  A life line….that’s it.  Throwing them a life line to help them get out of the quagmire they damn well didn’t mean to get themselves into, but managed to when they said “so..ahhhh…how are you?”.  And honestly, it’s just lovely to see the look of relief flash across their face, as they frantically snatch at that life saver with desperate clawed hands.  “Oh god yes…..oh well done….yes yes yes, its the way to go….you MUST stay positive, that’s what gets you though you know….”  Their relief is audible! And positive thinking is so trendy right now…..so “in”.

However, there is one exception to my new regime. Prednisone.   Sorry about the long description, just skip to the adverse reactions, in particular, weight gain.  The thing is, I’m forced to take rather a lot of prednisone.  In fact, I’d probably be bed ridden without it as I recently discovered when I tried to cut out a mere 2.5mg of the stuff and couldn’t use my hands or walk at all well the next morning.  However, there is a hidden silver lining.  If they do decide to make a movie of Enid Blyton’s “Faraway Tree” I’m pretty sure I could totally blitz getting the part of Moon Face just on appearance alone.  FYI here are a couple of pictures from the original book to illustrate my point…

 

This is one of a couple of characters from the Faraway Tree…..can you spot Moonface?

And here’s one that I feel reflects my personality a little more….although the first one could be quite accurate if it were to be symbolic of a photo of myself hanging out with a couple of my close friends….you know who you are….especially Saucepan man.

In any case, I simply can’t hide it.  Especially if I bump into people I haven’t seen for a year or two…often they actually don’t recognize me.  So in those instances, I feel compelled to try to explain my vast, and I DO mean V A S T change in appearance….

Unfortunately I haven’t got it down pat yet. And so I tend to go into a babbled over complicated explanation about scleroderma, tests, antibody type….it’s like a runaway train….I get faster and faster and increasingly more complicated until I’m fare screaming down that railway track with more and more gruesome information  about the disease.  It can range from getting my esophagus stretched to complicated explanations about microvascular angina….until before I know it I’m talking really loud and really fast and seem to have found myself explaining my latest bout of hemorrhoids due to lower gastroenterological  motility issues.  All in order to justify why I’ve become what feels like a walking beach ball with a big fat round moon face for a head.  Or, to be a lot kinder to myself…..all in order to justify why I’ve gained so much weight and don’t look like I thought I would at almost 50.

I guess I’ll have to work on that one…..and I’m thinking the place to begin might be to learn to accept my appearance doesn’t actually mean everyone will judge it as harshly as I do.

Not “positive thinking”…..just GOOD thoughts.  There is a big difference.

I might just stick this to my bathroom mirror…..

 

 

 

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