Bathtubs, Bat Signals & Single-dom (Oh My!)

At chemo on Thursday, I sat beside someone who was diagnosed with Rheumatoid Arthritis when she was twenty years old, the very same age I was when I donned my “Lupus Face.”  At one point, this woman to my left, sitting by her “drip, drip, drip” of the RA miracle drug Remicade, asked me if I was married.  She must have been in her 50’s, her entire head of hair pulled back in a silvery ponytail, her oversized sunglasses slipping every so often down her nose, which she curiously kept on for the whole 4 hours of her IV treatment.  I smiled at her question and shook my head “no.”  I was not surprised in the least when she smiled back, shook her head sadly and said, “yes, relationships are hard.”  

She continued on to describe one night when she approached her now ex-husband and asked if he would help her out of the bath if she chose to take one that evening.  He said yes and so, like many RA and Lupus sufferers before her, she ran herself a hot, soothing bath for her achy body.  When it came time for her to get out of the tub, she called out for her husband.  There was no answer.  She called out again… nothing.  She had to wait three full days for him to return.  Among other medications, she was on steroids and her body went into steroidal shock and withdrawal.  When he came back he said simply, “I was hoping that you would die.”

There is so much more to this story that I didn’t hear and so I choose not to put too much meaning into that dramatic last line.  It just made me sad.  I am sure they were very happy once.  She said he married her when she was already sick, but “I guess you never really know until you’re really in it.”  

My eyes have been red lately – that’s a Lupus thing…you know, inflammation of the eye vessels.  I remember having a particular bad bout of the “wolf eye” when I traveled to Toronto for a conference a few years ago – it took gargantuan inner strength to simply look at people!  My inner voice was working overtime – “surely they think I have a grody case of infectious pink-eye (not at all conducive to any kind of social networking) or I had clearly just been in my hotel room getting high!”  Oh, the drama.  The bat signal (butterfly rash) is out too, I’ve noticed.  Started showing up last week.  I have thanked my rosy moon cheeks for the warning and I’ve made sure I’m extra tuned into the sights and sounds of my body, especially now that I am weaning off “Evil P.”  I’m getting headaches now, nothing major, but enough to send me back to bed for hours.  I feel Chester, my cheeky, chest inflammation monkey, poking at me lately.  Breathing is fine, but every so often he’ll give me zings of pain to carry around in my breasts, just to remind me that he’s still there.  I’m cool with it.  I, of course, understand the need to get a little attention now and then.  

I’m still feeling the affects of chemo today… had to say no to several lovely invitations to venture out into world that exists beyond my fuzzy blanket and the whirring buzz of my little portable heater.  That’s what happens when the bat signal lights up the sky – instead of going out to “save the day,” I know I must stay in.  Obviously, I don’t have a very good track record for doing this, but I am working hard to be a better Superhero.  Don’t they say that the best way to save the world is to save yourself?  Well, most in the city are watching the Pacquio fight, including my parents, so saving the world involves an empty house and I’m thinking, perhaps some popcorn?  Watching the French Film, Amelie, is certainly on the menu – it’s the perfect movie to watch when you hear a story like the one I heard at chemo.  I suppose it’s expected that I would go home, eyes wide open with fear that, oh my god, that could be me, in that metaphorical tub, waiting, waiting, waiting, for someone who will never come.  A previous me would have definitely done that.  Instead, I choose the me that would buy one of those remote control bathtubs that Ed McMahon promoted, so that I wouldn’t have to ask anyone to help me out of the tub at all!  So to all you lonely Lupies (and general humanoids) – Take showers, not baths!  Eat popcorn, watch Amelie (English subtitles, not dubbed, please and thank you)!  Rest, sleep, then meet one of your favourite keepers tomorrow morning for pancakes!  That’s my plan… what’s yours?

The Soapbox Inquiry

Why am I doing this?  Why do I so willingly hand you my Lupus-related emotional baggage?

Because on September 14th, the fearless, euphoric joy that came with my Lupus Cerebritis induced hypermania flooded my veins, my everything, convincing me that I was a warrior for Lupus and auto-immune disease sufferers everywhere. I lifted my then 94-pound frame onto my little soapbox and proclaimed, “we have the ability to cure ourselves!  Join the revolution, the EVOLUTION!  Help me unravel the mysteries of the brain, of Lupus!  Be my medical team, my Watson, because Lupus isn’t going to beat me and I need all the help I can get!”  I posted it on my facebook page, practically yelling and screaming at people (most of whom were little more than an acquaintance) to come look, come read all the nasty little details of my sickness, come see how it destroys me, come see how it has saved me!  At the height of my mania, I even had designs for t-shirts in my mind, a script for a short video clip reminiscent of Canadian comedian, Rick Mercer’s, rant segment on his satirical news show on CBC, where I entice readers to my blog with a fast-paced, humourous, “motivational speech-esque” soundbite, ending, of course, with a shot of the back of my t-shirt which says, “you can cure yourself!”  I even had ideas about having “side events and projects” connected to the blog.  “Movie nights with E,” for example, where I would plan movie nights here in Winnipeg, perhaps rent out a local movie theatre, for the purposes of watching movies and documentaries that would help me in solving the mystery of what was happening in my brain or of how to live well with Lupus in general.  Readers who didn’t live in Winnipeg could rent these films on their own and could easily join in any discussions I started on my blog.  “E’s Book Club” was another idea, I even seriously approached a colleague of mine to create a documentary of my Lupus Cerebritis experiences.  I already had four video clips and an extravagant idea to send a preview to none other than Oprah Winfrey.  Feeling the utmost feeling of peace and tranquility, I swam joyously in my mania, believing that my blog would create a powerful community of individuals who would help me in this mystery-adventure story of preserving my life.  It was like a game, it was fun and challenging, exciting and exhilarating.  Being that I was on the highest dose of prednisone possible, my energy was at a level I had never experienced before, I felt like I could do anything, be anything.  It didn’t matter that I couldn’t sleep – I was whizzing through my 22 hour days as though I had slept for a lifetime the night before.  I had my arms wide open and I was giving the world everything in my “Lupus Life” after spending almost a decade revealing it to hardly anyone.  

I’ve always been a person of extremes.  I fit the bill of my designated horoscope with laughable perfection.  Yes, I am the Gemini personality who gets bipolar hyper-mania symptoms as a result of Lupus-induced brain tissue inflammation.  Lethal combination, no?  Painfully ironic, no?  Well, I do admit that it’s also pretty funny.  It also makes it pretty hard to figure out whether I’m just being typical Elena or whether the mania is doing the talking, especially nowadays when everything is much more subtle.  So this brings me back to my initial question:  Why am I doing this?  A few weeks ago, I surfaced the waters of my “mania lagoon,” finally realizing that I had spent almost two months thinking that my mental state was completely lucid, when in fact, my mental condition had changed very little from when I was in the hospital.  By re-reading all the emails I sent out and the writings that flowed out of me like a rushing river that had no end, I fell off my little soapbox, landing as though I had just fell off the top of the Eiffel Tower.  I am no longer the 94-pound energizer bunny of the recent past.  The 20 pounds I have thankfully regained has also come with the dead weight of my newly acquired mania-awareness, the “oh my GOD, I can’t believe I wrote that/did that/said that” ball and chain.  No wonder I’ve been living like a hermit these days.  I said I was living a “vampiric existence” in a previous post.  I suppose we could combine the two and call me a “hermpire” or a “vampit.”  Well, whatever reclusive creature I might be at the moment, ironically, I am still blogging.  I hide in my room, but you, my readers, and potentially anyone else in the world with access to a computer, can see me.  I’m still as exposed as I was when I was a chattering little imp dancing on my soapbox.

So, WHY?  If you’re so embarrassed, Elena, then just stop.  If you’re scared now, then delete all this.  Do it. DO IT!!

And holy hell, have I been close… but, holy crap, I just can’t.  I can’t because it would mean that I would be in denial again.  This happened to me.  My brain got sick.  It wasn’t my fault?  NO, it wasn’t my fault. I didn’t mean to do those things.  I didn’t mean to say those things.  I wouldn’t have done any of that if I weren’t sick.  It wasn’t my fault.  I’m sick right now.  I’M SICK.  

I’m healing. 

So, is it that I want you to heal with me?  I know I don’t want you to be sick with me.  I’ve let you catch glimpses into how weak I can feel, how defeated, how close I have been to giving up.  In my “awakened” state, this has been very hard for me.  I don’t know if I want you to know that.  I don’t know if you should know that.  Do I think that you will think less of me?  Why do I even care?

The truth is, I have no superhero pants.  I’m not Xena, Warrior Princess or the White Lady of Rohan or some amazon warrior woman, her armour shining in the blazing sun.  I’m just a girl who spent the whole day in her pyjamas, eating croutons like chips, shuffling around her parents’ home under a heavy fog of fatigue, napping intermittently while battling the incessant nattering of her brain fuzz and it’s constant mental chatter.  That’s the reality, that’s how my Lupus life can be without the aid of mythical metaphors and Hollywood characters.  

I found out this week that I have one more stop on the “Chemo Train of Love.”  In the meantime, “Evil P”  will be weaned off in 5 – 10 mg increments per week until I am down to 15 mg.  Once I am at 15 mg, my blood work will decide what comes next, but it will most likely be in the form of “Immuran,” an immunosuppressant drug.  Dr. H says she wants me to keep taking Plaquenil, the pills I have been taking for the last 8 years, and I will continue with all the other pills I am on to protect my lungs, ovaries and bones from the effects of the chemo and prednisone.  I am happy to know that I have crossed over into a new phase of figuring out how to effectively control and prevent Lupus Cerebritis from rearing it’s ugly head again, but I find myself increasingly anxious about the amount of prescription drugs in my body.  I received a phone call from the rheumatology nurse today, telling me that I should get the H1N1 shot, once the “hypo-allergenic” one comes out in November.  I was surprised because the info sheet for cyclophosphomide (chemo) says that I can’t have immunizations.  I was actually relieved when I read that because it gave me an excuse not to get the H1N1 shot,  an immunization that I don’t believe to be safe.  Furthermore, it’s another strange and mysterious fluid entering my already tired, bruised and inflamed body.  I am conflicted.

I also digress.  I was asking why I am writing this blog. I average 39 readers a day, of whom I believe to primarily consist of my keepers, curious Facebook friends, perhaps a random person or two and hopefully some fellow Lupies that saw my link on a Lupus Facebook Group.  I know… it makes me look pretty silly for freaking out about people reading my blog when so few people actually view it.  I do have to say that I have received some lovely messages from some very wonderful people; some strangers, some very close to me and some of whom I have not spoken to in years, who have told me that reading my blog has effected them in a positive way.  Some even shared their stories with me, a privilege I do not take lightly.  I have met brave, young women with Lupus and other chronic illnesses in this strange, internet universe, who want nothing more than to simply talk, to compare, to discuss.  I have discovered that the need to relate crosses all boundaries, geographic or otherwise, and that you do not need to meet someone to inherently know that they understand and support you.  That’s all we really want, us chronic illness sufferers.  We want to unload without burdening, we want to tell without having to say it all, we want to know that we’re not the only one, that there is someone else out there who I can look in the eye and say nothing, but they would know from the way I walked up to them exactly what I was feeling, what I was thinking.  

I write tonight because of those messages.  I write for my keepers, who encourage me to keep writing, who say they feel closer to me by reading it.  And yes, I write for myself.  It’s the bread crumb trail that I leave behind me as I navigate my way through this dark patch of forest, but not so I can backtrack to where I was, but so I can turn ’round and see how far I’ve come.

Finding the Good in “Evil P”

 

“Evil P,” the dreaded corticosteroid, “Prednisone,” would seem to be just another white pill, encircled by an invisible russian roulette of side effects.  I’ve “won” almost every side effect on the list:  increased energy/restlessness, increased/constant appetite, thinning skin, fat redistribution to face and torso area, hair growth (peach fuzz), swollen legs, mood swings/steroidal psychosis, insomnia, night sweats, fungal infections, muscle weakness, easy bruising/slow healing of wounds, irregular/fast heartbeat, increased urination.  I can count the remaining side effects on one hand.  So does all that make this small, unassuming pill “evil?”  Perhaps it earned it’s evil nickname because of the overabundance of “luck” that comes along with it, that the unfortunate souls who must consume it usually come out with all or most of the side effects it has to offer.  I realize, of course, that I am on a very high dose and so I naturally have more “luck” than those who are on lower doses.  I am presently holding steady at 40 mg a day (from 60 mg).  I have my chemo follow-up appointment with Dr. H on Thursday, so let’s hope my blood work provides incentive to lower it once again.  

I am up to my neck in my own “Lupie Lamentations;” that quick sand of complaints and tears and self-pity.  I’m sick of it.  I am sure everyone else is sick of it too.  They say that if and when you find yourself in the unforgiving mess of a pit of quick sand, you must stay still.  If you stay still, than you’ll stop sinking.  Ok, then.  So, while I am “taking pause” during this, my “Lupian Epic Adventure Story” (roll in haunted forest set and cue creepy animal noises), I thought it would be the best time to focus on the other side of Evil P.  

I took a stroll with my parents in “Assiniboine Forest,” a criss-cross of walking paths set amidst quivering aspens and oaks, tall prairie grasses and recovered wetlands.  Leaves were everywhere and they crunched, crunched, crunched beneath my feet, the sun was beating down on my orange toque, the sky was open, true prairie sky blue, not a cloud in sight.  It was there that I stumbled upon the good side of Evil P.  Every breath I took that day went deep down into the very depths of my lungs.  It didn’t stop 1/4 of the way with a painful jolt, the pain didn’t travel along the nerves of my shoulders up to my neck or accumulate in my right breast until it felt as heavy as a rock.   It didn’t stop my legs from moving, I didn’t have to lean against a tree for a much needed break from huff puffing, chest heaving pain.  Although my knees did hurt a bit, my legs moved consistently and without pause.  Every night I crawl into bed and lie down on my back without so much as a thought, no pain, no struggle, no pillows to prop me up.  I am not woken up by a stabbing pain in my chest or by a gasp of air as my body realizes it does not have enough oxygen.  My chest and my sides up to my armpits are tender to the touch, but that is all.  With the exception of my knees, my joints are not swollen.  The problems associated with my brain inflammation still persist, I am very tired all the time these days (my endurance does not usually last beyond a few hours) and I just found out that the blood clots I found in my veins aren’t blood clots but inflammation of the veins themselves (which can lead to blood clots anyway), BUT I have not been this pain-free in a very, very, very long time.  Three years at the very least.  That is good.  That is very good.

So, there it is:  The Good Side of Evil P.  I know there will be a time when I will miss Evil P, in the same surprising way that I miss my extreme, manic episodes.  I expect the pain to come back, of course.  Next week we will find out if three rounds of chemo was enough to put the reins on my overzealous, destructive immune system.  If so, then the docs will continue to wean me off of the prednisone.  After that, it is quite a mystery to me.  How long will the chemo last if it is deemed effective?  They’ll probably want to keep me on a low dose of prednisone, although I would like to get off of it completely.  As I have mentioned before, I have no other options because I am allergic to all anti-inflammatories.  The docs might get me into an allergy clinic to decrease my insensitivity to those drugs.  I’m not sure what that involves, but I am sure it includes a lot of poking and trial and error.  I’m not too enthusiastic about that, but I will put my super-hero pants on and do it if I must.  

I dream of being drug-free one day.  That statement most definitely beats any and all of the grandiose, psychosis-induced life plans I have been spouting these last few months.  It’s the ultimate impossible dream.  One of my keepers sent me this quote from “Alice in Wonderland”:  “There is no use trying,” said Alice; “one can’t believe impossible things.”  “I dare say you haven’t had much practice,” said the Queen.  “When I was your age, I always did it for half an hour a day.  Why, sometimes I’d believe as many as six impossible things before breakfast.”  I dare say she has a point…

Speaking of “listing rituals,” I started my “Three Good Things” journal two nights ago. So far, I would recommend the practice.  It is a nice past-time as I remain here, suspended in my pit of quick sand.  I will also continue to test myself with attending workshops and events like my neuroscience sessions, observing myself to find out where I am at cognitively, to see where my limits are in social situations, slowly gaining my trust in myself again.  In other adventure stories like “The Princess Bride,” a hero ties a rope around the tree, attaches it to his waist and jumps in, ultimately surfacing with a mouthful of sand and the girl in his arms.  Not sure if such a character exists in my story, but it is clear that in this chapter I have to wait, that I must be still.  I know that my story doesn’t end in a pit of quick sand in the middle of the Forbidden Forest, so I am okay with that.  A little stillness would do me some good.  I have been feeling very tense, uptight… unsettled.  I need to chill out.  I need to find the good in my “now.”  I want to be 5 chapters ahead of where I am.  It doesn’t work that way, Elena.  One chapter at a time…

Chemo-Pond Reflections

Third chemo toxin round complete.  Three is a big number for me, it seems.  Let’s see if it ends here…

I came home with battle wounds.  The “needle man” punctured two of my tiny veins right through.  It took over half an hour for him to find a vein that he could actually use.  I am amazed that I have not developed a phobia of needles, especially after my delightful experience with the “spinal tap needle man” in the ER.  No puking, but I had to resign to my bed and that is where I stayed until this evening.  The rheumatology nurse called me to tell me I had to up my dose of Vitamin D because I am too low.  I know it’s probably because of the chemo (it’s known to strip the body of Vitamin D), but it’s more dramatic to think it’s because I live a vampiric existence these days.  The sun hardly ever touches my moon face. 

Lisa Ray, the actress living with bone cancer who inspired me to write this blog had her last chemo the day after I had mine.  She hadn’t written in her blog for weeks.  She said she couldn’t participate in her life, that she was “sitting on the roof” tipping pepperettes and whipped cream into her moon face.  She came back down from the roof, of course, but before she did she asked her readers, “are you fantasizing about a Cancer Vacation?  Cause if I didn’t feel so completely depleted, I’d be having the time of my life.”

I don’t have a rare form of cancer.  I just have lupus.  The timelines of my life are not held in the same menacing way.  I can’t begin to understand what Lisa Ray is going through and yet when she writes those words I feel myself melt right into them, like they were mine.  She too, is on steroids, experiencing night sweats and alterations in her personality, she calls her body her expanding wetsuit and every entry has at least one salute to her ever-expanding moon face and her unquenchable hunger.  I don’t have cancer.  I have lupus.  How can I have the audacity to say that I know what a cancer patient feels like?  Things could be so much worse.

My friends and family tell me to relax.  They tell me to watch movies because they wish they could stay home from work and watch movies.  They tell me to sit back and enjoy my “vacation.”  Have I mentioned that I am now officially on “medical leave?”  I have a great boss and I work for an amazing organization and they have given me time, as much time as I need to rest, to recover, to find myself again, to understand how the wolf has changed me this time around and I can’t even get myself to have a good time while doing it?  Everyone wishes they had this opportunity to sign out for a while, to reflect and all they see is me, sitting on my floor with my moon face in my hands wishing I was back at work again… wishing I was doing SOMETHING, anything.  I’m trying to have “fun.”  I swear.  It’s just that it also feels wrong to “have fun” right now, especially when I know things are so busy at work and also because, well, things just don’t feel very fun-like.  

I am happy though, of course.  I have such an amazing support system.  I am held up by the strongest and most loving people in the world.  They visit me and bring me my favourite treats and take me out to eat my favourite food.  They email me lovely notes telling me how much they love me and how proud they are of me and how strong they think I am being.  I have a roof over my head and lovely home-cooked meals and I get to see the smiling, warm faces of my parents everyday.  I can take walks and sleep in, write stories and read books.  I haven’t had a major manic episode in almost two weeks.  This might be my last chemo treatment.  I am down from 60 mg of prednisone a day to 40 mg.  Life is good… so, why can’t I have “fun?”  I feel like I owe it to all of you, all of you out there working hard without a break.  If I don’t have fun it’s like a slap in the face, time wasted.  That’s the last thing I want to do.  There is no time to waste.   

To be honest, I have found myself thinking about not writing in this blog anymore.  I am still sorting through those feelings… I have been feeling very confused about it’s role in my recovery.  I have been doing a lot of research on lupus, brains, bipolar hypermania and steroidal psychosis lately, even more than usual.  My whole premise for this blog was that “knowledge is power,” that we all have the power to heal ourselves, that in order to do that we have to face our disease full on with openness and courage.  My mania made me unafraid to pour my heart out into the internet world, to share how weak I felt sometimes, the fear and yes, the hope as well, but is it too much?  Should these words be tucked away in my journal somewhere or reserved for late night conversations over tea with close friends?  Am I just as silly as those who twitter their everyday goings-on for people they hardly know?  Is this just some kind of self-centred, self-serving exercise made in throes of mania?  I came across some “knowledge” the night before my chemo treatment that sent me reeling.  It made me question if knowledge is really power at all.  I’ve been in search of knowledge constantly these last two months – I am reading, researching, googling, questioning 24/7 and I don’t feel like I know more at all.  I just feel more confused.  I am no closer to figuring out how I move forward with my life, of what the next step is in regaining the independence I once had.  The only thing that is certain is that I am changed.  What that means in it’s entirety I do not know.  Only time will tell.  So do I just stop and truly “sign out?”  Do I stop researching and blogging and just read fiction and write stories?  Is that the real way to heal?  Is that the real way in which I will discover the Elena left behind after all of this is over?  I, of course, don’t know and I don’t think any of you know the answer either, so maybe the whole point is that there are no answers.  

Well, that’s just unacceptable, people.  There has to be an answer.  There has to be.  I just wish I could trust myself enough to know when I’ve found it.