Awkward Pretzel Moments

A massage, I was assured would be just thing to ease pain from cramped muscles.  Cramped muscles that had given up being cramped, and now just hurt.  A light massage, with stretching.  Thinking a mild form of Thai massage.

With medical blessing I gave it a go.  Mostly out of curiosity.  Except the small lady who was to do my massage told me that mild wouldn’t solve the problem.  Oh no, much stretching and pushing would be required to get rid of the “badness” she said with a confident nod. Not really sure if this was a good idea, I decided since I was already there I should give it a go.

I was stretched, kneaded, twisted and turned.  I was chopped and pushed until I no longer knew what was happening.  Thumbs, elbows, for all I know knees, were pushed against painful areas on my body.  Rest assured the pushing was painful.

The twisting left me feeling like an awkward pretzel. The kneading left me feeling as though I had been pummelled by an angry army of children,  for all I know feet may have been used.

And now hours later, hours after the torture, some of the tightness and pain from cramps has faded.  Did the tiny lady with all that strength manage to do the unthinkable?  Or did she inflict just enough pain to take my mind off the other pain?  Who knows.  For now, I will just keep checking for bruises.


Hands Inside

With everyone back from summer vacations and what have you, my world is suddenly more filled with people. People who have germs and such.  People who may want to share their germs.  Germs I would rather not have.  So I avoid people where I can.

It isn’t that I have something against the people, and I’ve not always been someone who is, well, scared of germs.  But I am now.  Because I have lupus.  Normally this wouldn’t be an issue with germs. Lupus is your immune system in overdrive. Which, in theory, means germs do not stand a chance.  But my immune system also attacked my health cells.  This is, in practice, a very bad thing.  So I take medications to knock down my immune system.  And sometimes they do such a great job that germs happily find my body.

And those germs that manage to get into a flagging body whose immune system is not doing well, tend to enjoy their stay.  They make themselves at home.  They romp and play. They set up villages and suddenly the germs that made someone mildly sick, make me super sick.  Viruses do the same thing.

And so I tend to keep my distance.  Not because you have body odor, or bad breath.  But because you may have germs or viruses that I’d rather no have.  So please, keep your hands inside at all times and do not touch me.  Thank you!

If My Body Is A Temple…

If my body is a temple, it’s an ancient one.  You know the kind.  Crumbling and in sad shape, pieces broken off and bits worn down.  You can sort of see what the temple would look like in its best form, but that’s pretty much been erased away.

The fact is, I’m not that old.  I shouldn’t have an ancient temple for a body, but I do.  Some of that can be attributed to a reckless and carefree youth.  Some can be attributed to just living.  However the majority of the wear and tear, the majority of the damage is thanks to lupus.

I’m not so sure lupus meant to make my body into a decrepit temple.  It may have been seeking refuge and a place for reckless abandoned as well.  And it may just be less than careful and more destructive than it meant to be.  It doesn’t really matter how it happened.  It happened and now I’m left with a ruined temple of sorts.

Frankly it makes get be better to just knock it down and build anew.  Except they don’t  knock down bodies and rebuild them.  They can rebuild bits, like knees and hips.  That’s a start as I need those.  My wrists, ankles, shoulder, elbows and neck also need to be replaced.  Oh and kidneys and liver please.  My lungs are going a bit wonky so let’s consider that.

Yes basically friends, my body just needs to be swallowed up by either a whole bunch of sand or jungle growth.  That way, people m Get understand better when I say things aren’t working and I feel like a ruined temple!

Overcast Adventures

An overcast day seemed to suggest an adventure to be had.  We loaded the four-footed one in the car and headed off for a small drive and then a small walk.  It would be good for the four-footed one and I figured with the overcast sky, sunscreen and appropriate clothing it would be good for me.

I figured wrong.  The drive was fine, as was the beginning of our walk.  About half way through, I opted to turn back and rest in the car.  Beloved and the four-footed wonder decided that the spirit of adventure could not be ignored.  So off they went, racing headlong into the ace mute while I made my way slowly back to the car.  And a place to rest.  And perhaps feel somewhat human.

As I sat in the car, out of the sun, I could feel my body swell.  My fingers started to look like sausages.  My feet would swell more if not for the confines of my shoes.  I tugged desperately to get my rings off, knowing if I waited, I might not be able to get them to budge.

When Beloved and the four-footed one reappeared, both were breathing hard as they ran to the car.  The four-footed one happily jumped onto my lap while Beloved made his way around the car and into the driver’s seat.  A quick look at my ringless fingers, brilliant butterfly rash and overall state told him all he needed.  We didn’t make any side stops, just drove straight home, where I could at least stretch out.

We had planned to do some grocery shopping at the market on our way back, but we skipped that so I could rest.  So after he got the four-footed one and I settled, he headed off to do the shopping and carry on with a different adventure.  Me, I was all adventured out.  Same as the four-footed one.

Lessons From Books

It can be hard to accept help, even though you need it.  I know I struggle with asking for help.  Even worse for me is actually accepting help from someone.  Even if I’ve asked for it first.

it really shouldn’t seem to be such a huge challenge for me.  But exhausted as I was today, as much as I knew I would need help carrying all my stuff home, I refused to let Beloved carry it all.  I carried my backpack which had my tablet and purse in it.  Beloved carried the bag off books I purchased.  He also carried my water bottle.

Part of this for me is trying to prove that despite lupus, I can still do things.  Part of this is probably ego and pride because for me I struggle with recognizing that lupus has limited some of what I can do.

A strong person, a wise person, would recognize the need to be a bit kinder to herself when she isn’t feeling well. After all asking for help is a sign of strength and wisdom.  The same with accepting the help.

Pits not just okay to ask for help, it’s an empowering thing to do.  And I reminded myself of this today as Beloved happily stepped in to help out.  So I’m going to work on being more empowered by this.  And in turn, Beloved told me, him being able to help out makes him feel like he is supporting me with my struggles.

A Touchy Subject

One of my doctors has done away with magazines in his office. I thought it had to do with germs and all those different people touching the magazines. So naturally while we were chatting, as this doctor is want to do, I asked about the lack of the magazines.

I was prepared for the germ discussion, even the fact that most people now use digital devices to occupy themselves while waiting. Needless to say when my doctor said he was tired of paying for magazines that would be damaged with pages being ripped out of them or for the whole thing to go missing was the real reason why he put a stop to them.

He said that for years he had been paying for people to basically steal from him or destroy his property and he never said a thing. His office manager, at one point, put up a sign telling people the magazines were there for everyone to enjoy so please leave them in the place and condition you found them in. I honestly don’t remember that sign, but since I don’t touch magazines or books in the medical offices, I wouldn’t necessarily have noticed it.

He asked me how often I clean my phone/phone case since that is exposed to the public and when I told him how often (like all the time) he said that it made sense why I asked about the magazines and immediately thought of germs etc.

Was I always like this? I don’t really know. As far as I can remember I was, but I am pretty sure that a good portion of this has become magnified and now seems to just be how I am when in fact it came in with lupus. Not that lupus itself makes you become aware of germs, more or less the medication that you may take to knockdown your immune system makes you more aware.


One of Beloved’s oldest and dearest friends is getting married. The happy couple decided to write their own vows rather than have any of the honor, obey or sickness and health stuff. Instead they wanted something personal and meaningful to them as a couple.

They also wanted to avoid the whole topic of sickness and health because the groom has stage four cancer and said the last thing he needed or wanted was to be reminded that his life was going to be short. He wanted to celebrate his life, his love and the union he was forming with his amazing bride.

Beloved asked me, if I ever said yes to his question, how would I feel about the whole sickness and health line. Given I’m hardly a traditional girl and will never say to any question posed on a bended knee, he really has nothing to worry about. But the reality is I’d probably not have that line, or richer or poorer and such in any vows. They are empty words at the best of times.

At the worst of times, they serve as reminders to the cost people pay while they do this routine thing called living. I’d just as soon get on with the living stuff and not worry about the costs I pay on a daily basis. I manage to meet the bill, and so does Beloved, so who cares if one of us is sick or not? And it isn’t as if I’d be saying yes to his wallet anyway so richer or poorer in terms of finances is tacky.

But there won’t be vows said in front of people, or a white dress or a cake. I never could quite wrap my head around the need for all those trappings. Just the fact that we have each other is enough. The rest just seems like unnecessary stuff.