Cookie Time

Some days you just need a cookie and no matter what you do, until you have that cookie things are just off.  If you happen to be like the four-footed one, you will settle for just about any type of cookie due to not being picky.  If a cookie should fall out of a box you will gladly consume it.  If a cookie should be provided to you by a loved one, that’s equally appreciated.

Some days though you want something special.  Not just a cookie, but your favorite kind. The kind that may be more labor intensive but also far more delicious than those out of the box.  And when you want that specific type of cookie, well stop everything right now.  Those cookies must be created for your consumption.  The longer you have to wait for them the more you crave them.

If you happen to be like four-footed one you aren’t capable of making your own cookies.  But you probably have a human who will do things for you if you give said human the right look.  Or perhaps make your cute little noise and snuggle up extra sweetly.  And if that doesn’t work and your human is in the kitchen, anything is fair game up to and including taking a running leap to smack your human’s body where the human’s tail would be, if your human had a tail.  Guilt is also a wonderful thing to use.  After all we are talking about special cookies.

So basically yeah today was about making cookies for the four-footed one.  Who practically danced they entire time they were being made.  She loves them and I love the fact they keep her breath nice and fresh.  It’s kind of a win-win, if only she’d help out with the dishes or such.

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Helping Hands or Room For Two More

I was supposed to make a cake today. Well actually yesterday except yesterday was a day of lupus treatment which meant nothing else got done.  Not to worry though, I decided, because the cake is easy to make to,or row is another day.  Except we are at to,or row and my hands struggle to work.  Simple directions are not all that simple to follow today.

Still a cake needed to be made and while the four-footed one likes to help I can’t say for sure that she’d be able to manage all the measurements and such.  Enter Beloved.  He can follow directions and measurements rather well.  He may not have planned on making the cake, but he was willing to do so.

Actually he was willing to do whatever it took to save flour from being wasted.  Or perhaps it was after the second egg hit the floor that he felt the need to step in.  At any rate making today’s cake became, well a piece of cake once two helping hands stepped in.

The mess was cleaned up, the cake was made, dishes were washed and all was good.  Because I had helping hands, which meant tomorrow still held promise of making cake instead of a phone call of regret and potentially disappointing people.  This is a relief because all too often my over enthusiasm for things combines with lupus in a way that is full of regret and disappointment.  But not today, not with helping hands.

Transitory Thoughts

My father used to tell me that nothing worth having ever comes without a fight. He would bring up how much more enjoyable things are when you have had to struggle to get something or make it your own. Somehow struggling, hard work and what have you is supposed to make me desire the end results more.

Of course, what he was really getting at was that I would hold that which I acquired through hard work at a higher value and would appreciate it more. And there may be something to that, but at the same time I have never not appreciated that which has come easy to me. I have also never assumed that something which came without effort or hard work was of a lesser value.

The rocky process of transitioning from one state into another is where the challenge, the struggle and the strife all rest.  After the transition is the state of change, where for some it is a place to stop and catch their breath and enjoy the view. I suppose that it is after the change where my father’s words come in. He is talking about that whole process from the beginning of the transition into the point of having become changed.

Is it the change we fear or is it the struggle that lies in the phase of transitioning?

Rolling Away From Anger Towards Gratitude And Appreciation

Someone Beloved knows from years ago was recently in the media discussing the importance of enjoying the little things in life while having gratitude for each moment.  We didn’t catch the live segment but a friend from Beloved’s home sent him a link to the recorded discussion.

In between rain storms and my need to rest, Beloved decided to listen to the discussion. He wasn’t expecting anything ground breaking or such from it.  He was just curious, idly so as he out it, because when he knew him, Beloved would not have suspected the boy to grow into a man discussion gratitude or appreciating the little things.  In fact when Beloved knew him best, he was an angry young man who was at war with himself and the rest of the world.

Beloved was curious as to what would bring about such a change, what life experiences had provided him these lessons.  It turns out a horrible car accident initiated the experiences which in turn taught the lessons.

A car accident which resulted in paralysis in basically the blink of an eye.  He indicated in the discussion that a spinal injury can prevent the body from properly regulating temperature.  He said a spinal injury can make you wish you could feel the rain against your legs when a summer squall suddenly popped up.  Being paralysed and dependent upon others helped him to relearn that life is made up of moments of rainbows and gentle breezes, the trick is to enjoy it all as best as you can.

Beloved listened to the discussion a few times and noted whether you are in a wheelchair or suffering from a chronic invisible illness, you tend to savour the good moments more than others would. I suspect it is because you know the dark moments that others can never even fully dream of.  And I know from my experience you don’t have the energy to keep fighting everyone and everything when you have to heal yourself.

The Sweetest Smell

UI received the most beautiful flower bouquet today.  No special occasion, mom special reason.  Well other than that a few friends attended a workshop on how to arrange flowers.  I was supposed to attend the workshop, but due to lupus I had to cancel, thankfully one of my friends was able to make use of my ticket.  In return she sent over the arrangement she had created.

The workshop was supposed to teach you how to create effortless and beautiful looking arrangements, both in vases and hand tied.  The bouquet that arrived at my house was a beautiful riot of colour and perfume, tied up in a delicate pale lavender ribbon.

Based on my lovely gift, the worship completely delivered all it promised.  And based on my friend’s phone call to thank me for thinking of her and offering her my ticket Id say she has completely run with the lessons!

She phoned me in between cutting flowers from her yard to create arrangements for both her mother and mother-in-law. And she had made plans with the other friends who attended the workshop to go flower shopping tomorrow so they could create some more arrangements to take to some seniors homes.  (She told me that they hoped I’d come with them and learn from them.  If I’m not well enough or have enough energy for the full deal, they’d stop by after picking up the flowers so I could still learn or just spend time with them while they make the arrangements.)

Beloved is currently collecting a count of the flowers we have so he can cut some tomorrow for arrangement lessons.  He wasn’t able to sign up for the workshop and couldn’t use my ticket today because he was with me, but perhaps tomorrow he will have a chance to learn. I bet the smell of the bouquets the ladies make tomorrow will smell especially sweet and heavenly the way mine does.  Not because of the flowers used, although that helps, rather because the simple gesture of care and surprise that goes into making something for someone when s/he doesn’t expect anything.

Attitude, Belief, Lupus and Me

Over the course of my life I have heard that my attitude makes all the difference.  When I used to hear this kind of stuff I’d chalk it up to my parents or some other authority figure trying to control me in a way I didn’t want to be controlled.

When I got a little older I took some courses in psychology where I was taught that you can trick yourself into believing things that aren’t actual facts yet, at least when it comes to yourself.  For example if you dont feel confident but you keep telling yourself you are a confident person and pointing out the things you did accomplish with confidence, well you’d wind up believing in yourself when it comes to confidence.

So I would try these little tricks of the kind when I was feeling the effects of a flare.  I’d tell myself I did have the energy for a shower and getting dressed and my follow thigh would happen even if it was a huge struggle.  And I’d basically carry on with whole day by breaking it up into little bits.  Sure there were some things that became too much to do, but I would wind up the day by feeling really pleased with myself and all I had accomplished.  I’d even feel proud when other people marvelled at how I pushed myself on despite being in a flare because I was in charge not my illness.

Here’s the rub though, I never enjoyed any of the time I spent pushing myself so hard.  In fact I barely remember most of what I  did and why I had to do it at that time.  I just remember it felt like I was pulling myself through thick mud and there wasn’t a helping hand in sight.  The reality is there were tons of helping hands, most of them trying to pull me out of the mud to rest when I had expected them to get into the mud and push me through.  Truth be told, there was no real need to push myself so hard because the only person I had to prove anything to was myself.  What I should have been doing was being more compassionate towards myself, caring a bit more about my health and less about how I could push through and beyond what some of my health coworker’s were doing.

As a result, my disease would flare horribly out of control and end up doing permanent harm to myself.  Which I would then shrug off as I pushed through something else.  It was a pretty regular routine in my part, until recently.  You see I acquired a new member of my medical team and he put it to me like this:  “why should I bother to put in time and effort to keep you alive and healthy if you won’t put in the same for yourself ?”  He also told me that all my accomplishments in my personal life and my work life wouldn’t mean much if I ended up stuck in a hospital.

What I had realized was this man had listened to me talk with other lupus patients about the importance of rest and self-care while I refused to do the same for me.  He wondered why I disliked myself so much that I saw no value in me as a person.  And he voiced all of this and much more during one of my appointments.  It’s not that I dislike myself or devalue myself (although I am my own worst critic), it’s that I felt that if I could push back at lupus id win the battle. I have since tried to shoe myself the same compassion and understanding I share with others who have a chronic illness and I must say it is a huge relief to not have to do more than I feel I can do.  It’s nice to accept that some days having a shower and getting dressed is a huge accomplishment and that is perfectly fine.  The only thing that has changed, and it’s such a small change with such a huge impact is that I’m allowing myself to be a woman who sometimes must stay within certain limitations, but those limitations do not reflect on my impact.

Of Dogs, Medical Appointments And Gratitude

I grabbed my four-footed companion and took her with me for rounds to my various healthcare providers.  We had gifts and much thanks to offer these wonderful people who do their best to keep me healthy despite me not always following orders.

My companion was of course a huge hit and she revelled in the attention she received.  When one of the nurses opted to take my blood work to check if I’d be able to do my treatment tomorrow another one informed me that my companion required being snuggled.  By the nurse rather than myself so that my companion wouldn’t see the blood being drawn from my arm.

I understand the logic that you don’t want a squirming puppy getting in the midst of a blood draw, and I can see the need to not have the patient hold the dog during this procedure.  I don’t really understand the dog being upset seeing the blood being drawn from my arm.  To be honest I don’t think the dog cares one way or another.  Although she might be fascinated in watching the blood fill up the various tubes.

My companion was having none of this cuddling by a stranger.  She kicked and she pushed, she squirmed and she wriggled all in an effort to get away from the stranger.  She growled and whimpered until she was placed on my lap.  Where she sat while we waited for the results.

When the rheumatologist came out to discuss the results she carefully assessed him.  She seemed to understand when he told me I wouldn’t be able to have more treatment for this year.  That’s what I took her sudden growling as.  So did the rheumatologist.  He apologized and tried to make nice to her, but she was having none of it.

The doctor wrote out prescriptions to get me through as best it can be and told me to snuggle the dog and hang on tight when things seem bad.  Because the bad moments are not nay a speed bump, until you are the one dealing with them.  Not exactly the gift I was hoping for, but within each moment we are provided lessons to learn.  This one is to allow others to help, admit things aren’t all rainbows and the appreciation and gratitude I have for those in my life, especially the four-footed kind who don’t care about lupus or that I’m not able to do everything they want.