multiple sclerosis

Am I Glowing? Mavenclad Year 2 Day 1

Friday I went out to lunch with work colleagues that I haven’t seen in over a year partly because I was such a wreck health wise, physically and mentally last year and partly because losing my ability to work and seeing them crushed me so completely because they represented what I could no longer do. It was such a motivating, soul affirming, fun, enjoyable lunch. It also shone a big ol’ spotlight on exactly the reason I worked beyond my physical and mental capacity and still went down kicking and screaming “Please don’t take my career from me.” I forced myself out of bed each day when I should have stayed put because these people made going to work worth it – it some weird way.

I’m on LTD (long term disability). I worked in IT. When I say I loved my career, I mean I lived and breathed it. I never really worked a day in my life (except those few positions where I just didn’t fit, but I just moved positions to something I did fit.) The stress lit fires in me that made it a game – exciting, fun, challenging! There was no problem so big or obstacle too wide that I couldn’t find a solution or way around, and that was affirming. I really thought that sheer force of will could hold my broken body and mind together while I did what I loved most – this career that I had built from nothing to one where I actually felt competent and comfortable and energized – until it couldn’t because MS yelled louder and restricted my thinking in ways I didn’t think was possible, but it did it anyway. My last few years were in the most mission critical, core business highest stress possible in my organization. Even good stress, so I’ve learned, can be way too much for the MS brain – my brain.

A year later I have perspective now. I also have an idea on how I could approach my job healthier, gentler, kinder to myself and my constant dictator: MS. I know I could do things differently. Not today. I just swallowed the 2 tablets that will make me feel off and exhausted. Day 1 of 5 for this final year of Mavenclad. Next month I will have 5 more days of tablets and then I’m done and we see what happens until 2021. I joke with my nearly grown children that the pills are radioactive because the handling instructions come with decontamination protocols should they touch any surface outside the packaging. It’s extreme. I can’t take myself too seriously (in spite of the somber posts.)

My goal right now is to find a way back to my desk – somehow. I don’t know what the least financially damaging way that would be right now. I also don’t know how to convince my medical team to let me. They’ve been trying to get me to stop working for about 10 years. They won’t even entertain the notion at the moment. Their response is actually reasonable (as much as I want to stomp around and deny it.) I have to learn how to live outside of work. I have to find activities that provide counterbalance to the frenetic pace and provide enjoyment and relaxation that I can also look forward to when I am not in the office that are just as fulfilling. I haven’t done this piece yet. I also have to find room for the therapies that will support going back to work, and really be aware of how much time and energy really is available to work in an office setting again. If I go back before these are in place, I will end up right back where I am or worse, and that’s no way to live. However, the end goal of getting back into my career has me glowing with possibility, and this is something I haven’t felt in a really long time.

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I am NOT Your Hero

Rider Waite Tarot Card 10 of swords. Man lying face down on dirt with 10 swords sticking into his back. Dark ominous clouds. The horizon facing is facing east, and the sun is rising.

I am not your inspiration.
I am not someone to look up to.
I am not someone to admire.
Please stop.

When you place me on this pedestal, you separate me and stop seeing me as human and hurting. So stop seeing me as a hero and see me as struggling because today I am struggling, and need someone to see me as I really am.

Today my MS has the upper hand, and all I can really see is the mess my house is, and the spasticity present in my arms, legs, ribs, back and neck just won’t permit me to do anything about it. Hire a house keeper you say, as if that is simply the easiest thing is the world. It isn’t for me. I want to do things with my money that is more than just filling holes because my body is continuously falling apart. Spend on physiotherapy because my particular health insurance only covers it up to $500 then it’s 100% out of my pocket until it costs me $2000 and then we’ll start covering it again, but be thankful you had a career that gave you extended health coverage. Pay for massage because because that’s really what actually helps my muscles, but we’ll only cover $300 for the year (3 sessions and I have to go once a week if I want some quality of life.) Spend on medication (Once you hit $3000 out of pocket, then we will cover 100%) I’m lucky, so lucky to have extended health coverage. I guess I should also feel lucky that I have been medically cleared for the next round of Mavenclad and its $64, 000 CDN/year price tag means I’ve more than met that benchmark for a 6 month reprieve in drug expenses. I’m lucky that I can afford the health insurance, that my grit, intelligence and luck got me into my career that had such “perks.”

Let’s be realistic, though. The spasticity that saps my energy, and makes movement painful, shaky, limb fatiguing and means my house never gets picked up properly hasn’t been under any control since 2015. I’ve been in in-patient rehabilitation and I have no idea what I was supposed to get out of that. I did get, and still use an Ankle-Foot-Orthotic for foot drop when I can actually walk. My medications weren’t adjusted. I did physio there, but again nothing really changed. If it wasn’t for my neurologist trying her best with the medications she feels okay with playing with, I think I would have lost my mind by now. I have tried everything I can think of that’s safe and reasonable and not adding more to stressed finances. I haven’t mentioned the $3-5k a year that I have spent on medical grade cannabis just to get some relief, but the combination that gives relief is not without side-effects. I’m tired of masks. I know it’s better than opioid level pain relief, but opioid level pain relief is actually covered by my extended health insurance and is not taxed even through it is as reviled and vilified like THC cannabis is.

This is me face down on the mat, and one of these days I am not going to get back up. This is me at my most defeated – most un-heroic. This is me sans war paint and rallying battle cry. Will you turn your back on me? or Reach your hand out and help me off the mat ? (Psst… I will get back up this time because it’s the only thing I actually know how to do. Just please stop making me your hero.)

Quiet Introductions

I don’t think my intended re-introduction to my blog was meant to be so angry.  No,  I can say for certain that it is not how I wanted to come back to writing again.  The thing is – it had to be that way for me to get out of my own way to be ANGRY enough that I couldn’t silence my voice any longer.

I’m not an angry person, though.  I’m a quiet person. I’m an observer. I find patterns, and then I dissect the elements of those patterns, especially watching human relationships. Wondering about each piece and each player, and more often than not berating myself for my failings in making the situation worse or  the ways I could have done even better.

I actually don’t like having the impetus of anger be the thing that makes me roar.  I’m a collaborator. I like deep discussions for mutual understanding. If you have a point of view that you’re so fiercely protective of, I am more interested in what brought you to hold that point of view so strongly. What in your experience made you believe that, and would you be willing to listen to how my experience has brought me to mine.

How about we talk about what’s very real in our lives and hearts right now? I’ll go first.

MS has brought me to the precipice of Secondary Progressive MS (SPMS). Officially I am transitioning from Relapsing Remitting MS (RRMS) to SPMS.  I’ve known this in my own heart since 2015, but now it’s in my chart as assessed by my neurologist Dr. M .  I  haven’t been the easiest patient for her to care for because my distrust of doctors runs deep.  This has meant that until this year the last Disease Modifying Drug (DMD) I took to try to prevent further Relapses was Gilenya. I was part of the study before it was approved, and the study unfortunately deepened my distrust of  the medications that are in my mind barely effective (anything less that 50% effective – and I’m just not willing to risk my other organs.) If I want to still be eligible for anything that’s new, I have to hold on to this transitioning status as long as possible because the truth is once I’m in the Progressive category there’s not a whole lot available to treat,  Which has meant I have agreed to take Mavenclad (cladribine) to try and hit pause and stop the steady slide down the disability scale (Or is it up? because the numbers on the scale ascend?)  I find the Expanded Disability Status Scale skewed on the whole walking portion –  because I am a part-time power-chair user and at an EDSS of 4 – if you asked e to walk 500 m without aid – it’s not happening without  a significant chance that I will fall, or not make it because my legs have tightened up so much making walking excruciating – zombie shuffle?

Mavenclad is a “mild” dose of chemotherapy.  I have finished the first year’s doses, and I’m now waiting for the blood tests to show my lymphocyte counts have started regenerating that blood test is at the end of September.

It wasn’t completely MS that forced me onto Long-term Disability, and it wasn’t the rigors of Mavenclad, it was my even bigger life long Shadow, Major Depressive Disorder with its side kick of Generalized Anxiety Disorder that made me realize something had to give because I couldn’t cope any longer, and I gave in to what my doctors had been after me for years to do – stop working. I want to believe that this isn’t permanent LTD.  My “job” was never work in the sense of dreading the 9-5 day where I sold my time for a salary.  I liked my work, I loved the people I work with, sure there were crappy things that sucked, but they never were bigger than the fun I had doing my job and when the job was up against impossible deadlines the people made the craziness worth it – every time.  I went into IT, something I had a natural talent for,  and it was fun.  Having to walk away because my body had decided to go off the rails IS infuriating to me.  But that’s just it.  Until my last day mid-February I was living beyond my body’s coping capacity.  It took 3 very serious conditions to get me to pay attention and realize I couldn’t keep it up any longer.  I still hope to find a way back to my career.  Mavenclad  however is a two year + 1 year immune system recovery and after June and July’s treatment this year – there is no way I can do this treatment and work in a meaningful capacity.

I’m still railing against all of it.  My fatigue levels are too high to do much of anything right now, and that is frustrating me. I struggle with figuring out how to contribute whatever it is I can contribute to something, but what? If I can’t get back to the career I love what do I have to contribute to? I didn’t realize the castle I was building was a sand castle, and that the tide was due to come in.

So now I have to build a new castle that includes and makes space and room for all of me – currently broken body and mind – to find a new way to learn to live within this body and with this brain that had it’s fair share of traumas – which I have never acknowledged or really integrated. I need to build a new home and a new life.  I don’t even know where to start.  This isn’t the first time I have had to start over, and it probably won’t be my last.  This one is by far the toughest because this time I really have to face myself.