When Your Parents Told You So…

When I was younger, my parents used to tell me to write a letter to the person I was upset with.  They didn’t tell me to send it, and in fact they never did let me send it, but they would insist that I write the letter.  The idea was that once I put my feelings and thoughts to paper I would find some healing or at least a way to move on.  And the letter would be ripped up or tossed on the fire so that I would have the satisfaction of watching it get destroyed.

Now when I was first diagnosed with lupus it occurred to me at some level that I could or maybe should write a letter to lupus.  Not that lupus would care, however it would still provide an outlet for things.  I didn’t do it.  I felt instead that I would be better served by taking that bundle of emotion and tying it into other aspects of my life.  And that worked well when it came to sorting out eating healthier, exercise regimes and such.

To be honest throwing that energy into learning everything I could about the illness and getting lost in school too all helped me.  But now, now I have time to consider things from a different place.  A place that reminds me that I have lost many things, and it’s okay to be angry about that.  It’s okay to rage about that anger, it’s part of the grief process.  And it’s okay to grieve for who I used to be.  So I have taken that idea and decided to write-up an obituary of sorts for some of my dreams and hopes.  And at the same time I have taken that idea and also written a gratitude journal for all the things I’m grateful or appreciative of since lupus has come into my life.  So maybe my parents may have been on to something.  But I’m going to do it my way!


A Fancy Mistake Of Sorts

I made a minor mistake today.  Well it didn’t start off as a mistake, more or less a fashion choice.  And in and of itself, it wasn’t a huge decision and for most people it would never been a mistake. But of course I am not most people (frankly when you get down to it, none of us are most people because we are all individuals) so it ended up being a mistake for me.

You see friends while I was getting ready to head off into my day, I opted to wear rings on my fingers and thumbs.  I do that.  I like rings. The problem is I have lupus which leads to finger issues.  I also have arthritis and sadly my knuckles are starting to show signs of it.  Today was one of those days where I could start off wearing my rings no problem (when my hands aren’t too bad they are actually a bit too loose on my fingers) and yet by the end of the afternoon I knew I had made a mistake.

But I’m a confident sort of girl (it happens with years of dealing with these issues) so I figured I’d handle this without too much fuss.  I tried a to gently tug them off, but it was a no go.  No big deal, I can just run my hands under cold water, even though my hands are already cold.  A friend suggested not to use water in case my rings slide off under running water were lost down the drain and instead offered ice as the solution in the past.  Neither worked.

One of Beloved’s sisters swore that butter, preferably the unsalted type (I’m afraid I didn’t ask why so I don’t understand the reasoning to it), was a sure-fire way to remove any ring stuck on a swollen finger, no matter how badly messed up the knuckle might seem.  Clearly my fingers and knuckles missed this memo.  And now, despite my confidence, I was beginning to realize that I had made a mistake.  Rings were a mistake.  They could become a costly mistake if my fingers decided to continue to impersonate a hot-dog that plumbs up when it cooks.

Thankfully just as the last shreds of my confidence were slipping off, I realized my fingers weren’t swelling any more.  Sure they weren’t going down, but they weren’t getting worse so I reasoned I could just wait it out.  They’d being to return back to their original size and I’d just be able to slip them off.  So that’s why despite being all set for bed I’m wearing my rings, earrings (I couldn’t get my fingers to undo them) and fancy necklace (again, clasps can be hell for me).  So hey, I might not be wearing fancy nightwear, but I’m all jeweled up!

I’m Dreaming Of Food…Or Channeling My Inner Chipmunk

Today I’ve been dreaming about food.  Well dreaming is probably the wrong word, lusting is probably more accurate.  I have been lusting after food today.  No don’t misunderstand dear friends, I love good food and I love sharing it with people I enjoy so it’s not unusual for me to think about food.  I’ve been known to plan whole menus as a means of pleasantly passing time and I’ve no shame in this either.

However today I’ve been running on the see food, think food, desire food sort of cycle.  I blame my medications partially for this shift in my food relationship.  I also blame people sharing delicious ideas and placed with me all in a very short period of time.  This sharing lead me to feel like I need to try it all, right now.  Not that I’m complaining about people sharing these things with me; whether we break bread together or separately but shared experiences I think is a wonderful thing indeed.

The thing is, though, between my medication, my lupus flare and the insane hamster on the wheel that is my brain, I fee exhausted just trying to figure out what to do and try and when.  And of course this makes my health teeter totter a bit more.  Again I am not complaining for I am blessed, truly blessed to have wonderful people to share food with and more importantly to not having to worry about where the next meal comes from.  I just need to tame the lusting of said food into something more manageable so food isn’t falling off my plate!

A Case For Chronic Illness or Travelling Lupus

In television land you can sit on your suitcase and get someone else to zip the thing up without any issue. In my world, if I were to sit on my suitcase to have someone help me zip it up, I’d just break the suitcase and everything would become some type of projectile. I keep this in mind when I pack because I don’t always have someone around who can assist with the whole sit-and-zip deal. Of course I also keep this in mind because going through security in airports with a bag that’s just about to burst open at the seams is a sure sign that you will be pulled over for someone to examine your bag more closely.

Yes my friends I have been that crazed woman, the one who is forced to open her bag at security and have everything come flying out in all directions just so some strange person can go through my stuff. The best is how they give you a short period of time to get your stuff back in your bag. Seriously by this point you just don’t care anymore how it gets in as long as it gets in and zipped so you can rush off to wherever you need to be before missing a plane.

If you are a perfect packer you have no idea what any of this is like. You probably glance at us with pity and perhaps amazement at what we all pack. Or you judge us for needing so much stuff and not following the packing rules of life. I get it. I’ve been there perfect packers, oh I have been there.

Life with a chronic illness like lupus is a bit like that over packed, need-to-sit-on-it-to-zip-it suitcase. You have to over pack because you never know exactly what you will need and of course the one time you don’t pack it will be the one time it’s desperately needed. So you stuff your suitcase full of what you need, you sit on it and find someone who’s got decent hand strength and coordination and you have them zip the case. You pray there will be a cart nearby because carrying around that luggage is just too much. And you hope that you won’t have to open it all up and have everything come tumbling out in public. Because it’s bad enough to know you are struggling and don’t’ have it all together, but to have an audience? No thanks.

Life with a chronic illness means debating if the trip is worth that kind of battle. It also means trying to find a suitcase that will work and will hide the worst of damage. And it means hoping you can find compassion and understanding when you need it most, like what comes with the stress of travelling.

I’d tell you more, but the 1400 flight out to Lupus Flare Reduction is now boarding and I have a feeling someone is going to want to go through my case before I get on the plane, so take care and take cover!

The Maze And What I Re-Discovered

Let’s face it, most hospitals are built a bit like a maze, or maybe it seems that way because you are unwell or hurt when you enter one. I always feel like I need to have some string or something laid out for me, as an escape route so to speak.

I don’t believe hospitals are built to be so confusing, but for me it always ends up being the case. No matter how many times I have been to the same hospital, or how many visits I make to the same area, I can still find myself all turned around in the place. For the record I have been known to walk around the entire hospital only to discover the first exit I had come to was in fact my exit. (Normally I am good with directions and having a sense of my own directions, not that you necessarily believe me after telling you I get lost in hospitals.)

I sometimes blame that weird ability lupus has which affects my cognitive skills, also known as brain fog for why I have gotten lost or confused when it comes to hospitals.. It tends to happen more so when I’m in a stressful or uncomfortable situation. Regardless of how it comes to be, when it hits I find myself struggling for words or stringing together thoughts into a logical sequence.

You would think I would know better than to try to attend my hospital appointments on my own, knowing that there is a good chance that I will end up doing a full tour of the floor prior to getting where I need to go. A smart person would certainly ensure that s/he has someone with her just in case. I, my friends, am not that smart of a person. I insist on managing my appointments all on my own, which is why I tend to arrive an hour before my scheduled time so I can do my usual getting lost and still make my appointment on time.

Today was no different than any other hospital visit, other than that today I ended up walking past my specialist’s door (which is clearly labeled for the record) not once, but three times before I realized that it was in fact his door. I was almost late because of this. The receptionist pointed out that I was not there ten minutes before the scheduled time, which is an expectation of this specialist, and therefore he had the right to refuse to see me. He is a kind man and understands things so he did no such thing. He also is fully aware that I walked past his office more than once because he could see it out of his window.

As I said, he is a kind man so when I got in to see him, he asked me if everything was okay. As usual I said everything was fine (I’m pretty sure my arm could be falling off and I’d still say everything is fine because that’s how my brain seems to work). He gently told me he had watched me walk past his office (a place I visit every two weeks for the record) and so something is clearly changed. And there it was, the time to admit that yes lupus does affect my ability to think clearly at times; a perfectly easy way to explain that there are more things than just my pain, lab work and joint issues going on with lupus.

A smart person would no doubt jump at this. As I said, I’m not all that smart because I told him everything was fine, I was just “preoccupied”. Thankfully he didn’t take that answer at face value, instead after discussing the latest test results, making adjustments to medications and such he turned the conversation back, ever so carefully back to my being preoccupied.

He didn’t’ say anything as I shakily told him about getting lost in the hospital, that the place is a huge maze for me. He listened carefully as I told him about reading his name on the door and not making the connection. And he suggested that perhaps we need to explore things a bit more as it is possible that this isn’t the normal lupus brain fog, but something else that is lupus related going on.

He made the appointments for me himself while writing down the arrangements on paper and sending me an email for later on. He reassured me and then, friends, he promised to be my string. True to his word, when the appointment was finished he walked me out to the door I needed to exit the hospital and promised to meet me for my neurologists appointment and scan next week.

And suddenly, although my heart is heavy and somewhere in my feet, I feel a bit of a weight is taken off me. I do not have to go through this alone, I am not expected to always be so strong. Loved ones have told me this before, but suddenly, coming from this doctor I realize that the only person who never gave me permission to put my fears into words is me. Now that I’ve put those fears into words I am a bit freer and I never have to worry about getting lost in the hospital again. All because someone knew me enough to know that while I couldn’t verbalize needing help, my actions said it all for me and that person let the actions be more than enough.

A Story Of Sorts or Lupus As A Villian

Once upon a time, in a place probably not too far away, there lived a girl who was full of life and energy. She was a decent student, a good friend, a cheerleader and carefree. She was happy with her life, riding the adventure of university and all the endless possibilities that stretched out before her.

One day the girl woke up feeling rotten the way you do with the flu. She brushed the flu symptoms off to the side, pulled herself out of bed, got ready and went to her classes, still feeling horrible, but knowing it was only the flu. Only this flu seemed to want to stick around so after weeks of feeling run down, tired and achy, the girl went to see a doctor.

At first the doctor thought that the girl was feeling the effects of stress from a heavy academic course load combined with an active life. He told her it wasn’t anything to worry about, but if she still felt the same way the following week she needed to come back. He suggested that she scale back some of her commitments and rest that was probably all she really needed. Except she had already scaled back most of her commitments and was at a point of missing classes now and she still did not feel any better.

The following week the doctor ordered some blood work and thus began the girl’s adventure down a rabbit hole that didn’t have the Mad Hatter or the Queen of Hearts. In this rabbit hole the only villain was known as Lupus. And while lupus may not have demanded to cut off the girl’s head Lupus made other demands instead.

Demands that included dropping out of the faculty she loved dearly, giving up on a career in a field that captured her heart. Lupus forced her to stop cheerleading and forced her to slow down everything that she did. Despite paying these high prices, Lupus would not let the girl go. Instead Lupus tortured her by attacking her kidneys and liver, threatening her heart a few times and forcing her to stay in hospitals more than she’d have liked.

Despite Lupus, the girl graduated with a degree and got on with her life, granted not the one she had thought she would have, but still full of love, friendship and purpose. To this day Lupus still is a villain in her life; Lupus still makes demands and dictates aspects of her life. How do I know? Because that girl is me and there are days I still feel as if I’m falling into the rabbit hole, but if I can grab ahold of something, anything, I can prevent myself from landing in it.

A Tea For That

A thin, completely breakable China cup of tea was pressed into my hands.  A plate of scones was expertly moved across the table towards the chair I had just moments earlier collapsed after making it home.  Tea is Beloved’s answer to everything.  You get bad news?  There’s a tea for that.  A need to celebrate?  He’s got you covered with just the right brew.  The man has a tea for every emotion you could be facing.

Scones, while not mandatory, are added comfort offered when required.  And yes, when he’s around there are always scones just made, in the midst of being made or stored for freshness.  I suspect he uses the scones to gauge how bad the news is…he worse the news is the least likely I am to eat a scone.  At the same time I know he will make scones to toss in the freezer when he needs the therapy.  Yep Beloved bakes for therapy now and then.

It’s funny how no matter how often you receive bad news, or deal with the darker sides of humanity, you still never get used to it.  And so the tea keeps coming while the specialists still try to sort out the latest results.  Sometimes, after these appointments, Beloved shows up with the tea in a thermos and the scones in a container.  Because sometimes, according to Beloved, the specialists need the comfort as much as the patients.

But on this day he had not come with me nor did he show up after the appointment.  I came home to scones and a whistling kettle.  Because on this day we already knew that the news would not be cheerful.  It was just a matter of degrees really, kind of like how you take your tea–degrees of temperature and sweetness.  

Typically I’m used to the roller coaster that is lupus.  But now and then after an amazing climb the sudden rush down is not what I was expecting.   This is when Beloved and his tea comes into play.  Not that I’m much of a tea drinker, but because there is comfort in his rituals of comfort.  There is routine in his methods, and sometimes that’s enough to stay on the roller coaster known as lupus.  Shame he can’t find a tea to deal with lupus for once and for all.