Crossing The Ts For Lupus

Beloved is the kind of man who will offer you tea if you’ve had a bad day.  Need to rant or rave?  He has a tea for that.  Need something to calm down or help you rest?  There is a tea for that too.  He has different teas for serious chat, funny chat or just curling up with a good book.  

He does not have a tea to hear or cure lupus.  Teas for inflammation?  Yes.  Teas to settle a queasy feelings?  Yep.  But nothing to cure this disease.

He has, however, a ton of patience and time to research.  So when a well-meaning, good-hearted friend told him of a tea that will cure me of my lupus, he had to check it out.  Not that he believed it would be a cure, but if it could help with a flare, why not give it a try?  So research he did.

What he discovered was the tea could only be purchased from a small group of people, because the tea is green in remote places, wth all the extras added to it being “special”.  This also means the tea is expensive.  And untested.  Only word of mouth as a validation that it works.  He decided it was more a placebo with mild anti-inflammatory ingredients and thus not worth it.  

So researched all the cures for lupus he could find.  From diet to lotions, from pills to a magical elixir.  Special diets, eating at certain times, eliminating items and such.  And of course it’s all word of mouth because if there was a cure, we’d know about it.  What do all these have that allows them to exist and for people to continue to promote them as a cure?  Hope.  They are all signs of hope.  Something to grab ahold of and anchor yourself to as you hope for a fix to a horrible, chronic illness.  But they are empty hope.  It’s like anchoring yourself with a floatations  device.  It just doesn’t work.  But you want to hope, you want something to reach for and grasp, so you do.  Because you need to cross all the to in your journey.  Just don’t fall for a healing tea.


Any Less?

Apparently my specialist doesn’t agree with my assessment of my joint pain and how to fix it.  Not even close.  I merely suggested removing my hips, knees and ankles, but he felt that was beyond extreme.  He suggested changing my medication for joint issues.  Again.  

So okay my suggestion may have been a bit drastic, but I did have a plan B.  Basically a nerve block for all of my nerves, which was met with with his not impressed look.  Of course he isn’t the one living day-to-day with this pain.  He isn’t trying to find a way to have a normal life while coping with this pain.  Heck he isn’t exposed to this pe of pain and he told me as much.

Is it too much to want a doctor who gets what it’s like to live with all the fun that comes with lupus?  Maybe it is.  At least it seems that way these days.  Instead you get doctors who suggest trying this or doing that, all the while admitting they have no clue what life is like with my illness.  Because clearly their medical degree trumps all.

Here’s the thing.  I’m not necessarily asking for narcotics.  I’m asking for understanding, compassion, dignity and maybe having someone who is willing to meet me half way.  I don’t think that’s asking for too much.  And yes, I’m willing to work with some.  I doubt I’m the only person wth lupus, or other chronic illnesses, with this wish.  But if I am, does it make it any less?  Am I any less for this wish?

A Touch Of Summer Sun

In a quest to get warmer, to touch summer or perhaps just the sun, I burnt myself today.  Well not really.  I mean I didn’t touch the sun nor did I touch summer.  What I did was touch a pan that had just been removed from an oven.  The pan had been in over at 450 Fahrenheit for over thirty minutes.

Now I did not intend to touch the pan.  It was just one of those things where the pan started to slide so I naturally decided to grab it.  I should have worn oven mitts, but that wasn’t natural.  What was natural however, was  trying to protect the four-footed companion from being burnt.

Cold water, plant an didn’t mention were all applied.  And I wondered, rather idly if touch the sun would hurt before you were vaporized or was that whole process painless.  I also wondered why on earth my mind wandered there. Probably because I wanted to distract myself from the pain and maybe to ignore the fact that the blister had not just formed but opened.

The thing is, who wants to wait forever and a day for summer?  Not I.  Not my four-footed companion.  But wait we will.  Because what else can we do?!

Resolved Resolution

It’s that time of year when people make resolutions and have plans on how to make their lives better.  I’ve given up on resolutions around a specific time or date because it doesn’t work for me!

What does work for me is making the changes when I’m good and ready and in my own time and on my own terms.😊  This, I know from past experience, is what works best for me.

It doesn’t mean that I do not have hopes, dream,and desires for the new year, rather it means that I’ve matured enough to recognize that one just be ready when one wishes to be the change.  It would, surely, be so much simpler if we could just make the thought become reality, but nothing worth having comes without effort and work and struggle.  I also remind myself that I do not want to take things for granted so change normally comes when I am ready and capable of appreciating it.

This is also a time of year that makes me shake my head with disbelief and wonder at how quickly a year has passed.  When I was a young child it seemed like a year took forever and a day, and now time is slipping ever so quickly through my fingers, passing me by before I can fully grasp the moment.

The only thing I resolve for upcoming New Year is to enjoy the small moments, the stolen moments as they come and not get caught up in all hype or rush.  Everything else will come in its own times but time is what I must appreciate most.

What are your make a resolution for the new year?