Johnny Cash just gets me.


Today
Today is a hard day.
I woke up feeling like I hadn’t slept

I fell back into a fitful sleep on the couch.

I ate breakfast with the taste of cardboard underwhelming me.

I know that every day is different

And some of them are just going to be better spent laying in bed listening to Johnny Cash 

I feel like my breakfast and all my words are just waiting to be regurgitated

So spiteful

Like maybe I shouldn’t have written so much about it

Talked about it so hopefully

Like I jinxed it

But I know

That’s just the darkness talking.

It’s just 

so fucking  

loud 

today.

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Somewhere post apocalypse

 Or that’s what it feels like anyway. It’s like a very clear line in the sand. Before the infusion, during and after. I’ve been home for about 4 days going on 189. The mind is really fucked up because normally I would consider myself to be the type of person to be perfectly happy in my seclusion. I’m the type of person that cancels plans to stay home, in my pjs, and listen to music or an audiobook. But right now it feels like I’m about to rip my freakin face off. 

Suddenly I want to go out and be the most social butterfly of a person there ever could be. Like literally surround myself with people and chatter and just fucking noise. 

Suffice to say my mind is playing tricks on me. My body knows it needs this healing time and all the boring sleep that comes with it. I’ve been treated to daily immune boosting smoothies by my very own Nurse Joey (who seems to enjoy watching me drink down the nastiest concoctions) 
Because I had rarely watched tv before the infusion due to the bad eyes, I’m still sorta unsure what to make of the whole tv thing. Like I know it’s there and there’s definitely stuff I could watch but part of me is worried that I’ll feel the same symptoms while watching and get really down that the Lemtrada didn’t work it’s hocus pocus magic. Maybe I’m just not ready to face that right now.

So for now, I alternate between audiobooks, Apple Music overload, overheating and freezing , getting in and out of bed, and trying to ‘find’ a hobby to occupy my time, which in and of itself, has occupied several hours of time. And so, in case anyone’s keeping score, I’m calling that a success!

Life goes on,

Angela xo

The aftermath


It’s been a bit of a blur. The week leading up to the infusion, the actual infusion and now…the aftermath. Leading up was mostly filled with doubts and anxieties while the week of was so surreal. I never thought I could be the type of person to actually do what I was doing. To wake up each morning go to the clinic and come back and do it all over again the following day. Just so fucking surreal.

But it’s over for this year. Now I focus on healing, on building my immune system back up, on avoiding infection and work on strengthening myself (maybe inside and out).

Physically, I feel like I just survived an epic battle. I’m bone tired and I’m quite sure I look like death. The steroids are doing a number on my body still, heat flashes, hunger, irritability…you know an average day in the life of Angela. 
I’ve felt some side effects but it’s been manageable thus far. The wise and formidable Nurse S told me to take the meds before the symptoms become too intense and like a loyal patient I’ve followed her orders.
Right now I’m mostly worried about Joey and him burning out. In the social work field we often talk about self care and the need to be your own priority and I’m pretty sure he’s not doing that. So dear reader if you know Joey and you’re reading this, invite him out for a coffee, a beer or a burger. I tried doing some of my youth work shit on him, you know with the circles of what he can control and not control but I’m pretty sure he thinks I’m just high. And I think we can all agree that might not be such a far-fetched thought. 😏
Since people have asked, I’m not able to have visitors (even the healthy ones) for another week or more. And after that, am under strict orders to limit contact with non sick people and maintain highest of hygiene standards and if I absolutely must go forth in the world, I should wear a mask. I’m not entirely sure how I feel about the mask. But I think it might be fun to scare people with and pretend that I’m protecting the general public from me and not the other way around. We’ll see about that. 

For right now, I’m going to enjoy my seclusion with Netflix and chill and dogs and husband and the occasional drug cocktail. 
Life goes on,
Angela xo

4 days down, 1 to go 

It’s been a weird trip of a week. Surreal and sometimes out of body like..until the anxiety slams into me and I come out of it reminiscent of adrenaline shot to an overdosing junkie.

The anxiety comes and goes at odd times and it feels like it’s just there to remind me…not always in an negative way but also in a ‘look at what you’re doing’. For example, the first iv was in my left hand and was sore and pinchy from the beginning when the nurse asked I told her how it felt and she wanted to change it to the other hand, we tried but I panicked and couldn’t continue. So we stuck with the original line. 

After last nights amazing removal, we agreed to try again in the right hand. And after all the anxious thoughts and panic, it was a success and it felt 10x better than the original one with minimal pain. Had I given less power to my anxiety, I would have spent less time in both unnecessarily anxiety and pain, you reminded me not pay you little fucker more attention that what you deserve. And that is to acknowledge the fucker’s presence, and let it fade into oblivion.

The rest of the day was fine no major humps to face aside from the occasional nausea and headaches all dealt with promptly by Nurse S.

As the day ended I was informed she would be joining me on my last day at a different infusion office and it literally made my smile just life up. She has been a tremendous support and I hope she knows how she made this week infinitely more manageable on me.

Tonight was rough. I felt beat down. It wasn’t just mental fatigue but it was all encompassing body drain. It’s what I would imagine any one would feel after a world weary battle. I feel calmer than I have in days and it’s no doubt a result of the week of things going on that has left me so depleted and for once it’s a good fucking thing.

I’m on my way to sleep and to everyone who reached out real or online or through or others or fuck even sent good vibes, a million thank you’s wouldn’t be enough. But your words and your peppy talk have helped me remember to keep to fighting through. So for you, dear reader, if all you did was read my blog or comment on social media or fuck even just thought about me. My heartfelt gratitude extends to everyone single of you. 

And to Team Angela (you know who you are, even the ones who were unable to take roster spots or the ones who provided me with excellent insights that I haven’t even explored

The darkness receded today. And for right now, that’s enough.

Life goes on,

Angela ‘Strong Like Bull’ 🐃

Day 3-Hump Day


So today was a long day. My blood pressure was high all day and it appears I have ‘White Coat Syndrome’ 

White coat hypertension, more commonly known as white coat syndrome, is a phenomenon in which patients exhibit a blood pressure level above the normal range, in a clinical setting, though they don’t exhibit it in other settings.

Sharmella continued to monitor me every 15 mins and then every 30 mins. I wanted to fall asleep like the other patients coming in and out and only staying for a few hours at a time. They’d fall asleep so quickly snoring away and I wanted to do the same but my mind wouldn’t shut off. 
I had a few setbacks today. I had a rash early on and had to take Benadryl. My mouth and throat were so dry that it feels like the Sahara desert has taken up residence in my tonsils. So my dear friend got me some flavoured Biotin spray! Woo hoo
Lunch was tricky and the pasta that I’d prepared was like sludge that couldn’t move through my dry tonsils. So my rocky friend brought me soup. 

Later in the day, I felt nauseous and a bit light headed and headaches. Sharmella provided me with her usual drug cocktails. 
Despite all the setbacks I had a huge highlight to my day! Sharmella removed me IV for the night and I am sooooo looking forward to a hearty shower with an unbelievable hair wash thrown in there. 
I won’t think about the replacement happening tomorrow.
So we are now three days down and two more to go. I feel fatigued and weary like a soldier. But I’m still here..strong like bull 🐃
Life goes on,
Angela aka ‘The Bull’

(I may be delirious from the aforementioned drug cocktail. You’re welcome)

Day 1 the journey begins

The day before my treatment was to begin, I had take 150 mg of prednisone (an evil mean steroid) and a stomach pill. I prepped and planned and went to sleep with the amazing help and kind words of a friend in my mind all white and green healing lights.

I woke up around 3:30 am, well before my 6:45 am alarm went off. My stomach was just screaming in pain and I awoke in a sweat. I wasn’t able to fall asleep but I made my way to the couch downstairs and just laid down in the dark, with my blanket and my dogs and my music.
When Joey awoke sometime later, I knew it was time to get the show on the road. I made breakfast, packed my lunch and drinks and we were off.

The clinic was small and clean but not in an antiseptic kind of way. The nurse, Sharmela was incredible. She took all my anxious blurts and scared looks in stride and even when I had to pop some Ativan after an attempted second iv insertion gone wrong, she joked with me and apologized profusely for stabbing unnecessarily.

The day was 7 hours long from start of an of hour of corticosteroids infusions and then 4 hours of Lemtrada and 2 of monitoring
The whole time is intermixed with frequent blood pressure and fever monitoring. My blood pressure was 160 which I knew it would be because I was so damn anxious but thankfully it dropped to 130 by the end of the day.

Along with the aforementioned infusions I was also getting fluids in the same way which literally made me pee the entire day away.
I wasn’t able to catch any zzzz while there. I wanted to so badly but the thoughts kept spinning even after gravol, Benadryl, Tylenol and Ativan. I’m strong like bull. And apparently this bull needs a fucking tranquilizer to get knocked down.

I got home and immediately crashed hard for hours. I woke up, had dinner and then took the most awkward bath with this unpleasant contraption holding my iv insertion carefully in place.

I’m heading to bed and have taken the slew of meds they’ve advised align with the horribly metallic tasting sleeping pills. I am glad that my first day is over and feel calmer with the knowledge that I know what to expect. The process is certainly less scary but I am worried about the side effects which are likely to occur in 24 hours or so.

I’m laying in bed right now. Going over my day and the support around me both near and far. I wouldn’t be able to do even half of it without Joey by my side. He knows what he means to me.
Day 1 is over and I survived. To me that’s a success.
Day 2 begins tomorrow and I hope I can make it through with the very same dry sense of dark humour and lack of shame that I owned today.

Life goes on

xoxo
Angela

‘In the midst of Winter, I found there was within me, an invincible Summer’

A very insightful friend recently asked ‘Angela, but what if the treatment works?’

And it occurred to me that I’ve been focusing on the week of infusions and the aftermath of side effects and never, not once, did the possibility of positive outcomes even enter this anxious and pessimistic brain.

So for transparency sake I’ll be honest here…I’ve always thought positivity was being fake, ignoring the real shit and focusing on the fairy tale. I would always say ‘I’m not a pessimist, I’m a realist’ and while I still believe part of that is true. I’ve also become aware that now for my survival, I need to not just dip my toes in the positivity ocean but take a full-forced running leap into it. Make-believe or not. It doesn’t even matter at this point. What matters is that if I continue to focus on all the scary treatment and every possible side effect, I’m going to either not do the treatment or I’m going to suffer my way through it. My eyesight is more important than my negativity parading as realism vice versa and suffering has never been something I’ve actively looked forward to. 
So here it goes. If the treatment works, the following will be possible:
-I won’t be in pain on a daily basis

-I can watch tv with Joey and finally watch all those shows everyone is talking about!

-I can go to the movies!

-I can go to the bookstore and BUY an actual real life book!!! (Aaaaaack!!!!)

-I can return to working five days a week (which means the youth will have more of me and my pay check will be what it should be)

-I can be relied on

-I can pull my own weight around the house and not have to depend on Joey

-Joey will be less stressed out and happier

-I won’t have to rely on medication to temporarily take pain away

-I can wake up in the morning and feel good

-I won’t sleep my life away, alone in my room

-With the summer and heat approaching, I can enjoy the outdoors (maybe even symptom free)

-I can plan to travel to awesome places 

-I can make plans with my friends and NOT cancel at the last minute (this is a big one for me) 

-I can walk my dogs

And last but certainly not least, there is a 75% possibility that I will be relapse FREE for the next four years!!!

I may need to reread this on a daily basis until it becomes my mantra

I begged for your peace..for a piece of It

You’re going to let your entire life pass you by in a blur of fears, anxieties and worries. You’ve lived most of your life with one foot in the grave always waiting for the other foot to fall.

You missed all the beauty life could have offered you. The beauty it did offer you but you were too scared to even notice.

Your family surrounded you and loved you and I don’t think you ever believed it. Fully. 

It was tainted with angry words and resentment. You let your fears, anxieties and worries take up room in your head instead of the laugher and love that was around you. 

You heard the cruel words of the world and at night, in the dark, the conflicts around you were the only things you replayed behind your eyes. 

You couldn’t listen when your child begged for help and needed your hand to keep her from drowning. You could only hear your own pain shouting so loudly in your ears.

You didn’t hear your child’s fear, anxieties and worry replacing what should have been their own happy thoughts. You only heard your own voice crying out in the dark. Again and again. 

Instead you obsessively worried about when you would die, frantically worrying about when the pain would suffocate you. 

And I still don’t know whether or not you were worrying about when and how it would end or if all along you were simply hoping for it. 

And in my hour of darkness…

I’m gearing up for my week before treatment. I’ll have to start taking prednisone. I started reading the booklets that come with the treatment. It’s all nicely organized in a binder with different booklets entitled stuff like: Before you start treatment and The weeks following treatment. Everything is laid out so carefully and precise. It goes over what to do to arrange for the treatment such as arranging rides and company and packing a bag of goodies. What to expect during the infusion is a big part of the booklet. It describes what the day will look like. I’ll arrive in the morning and there will 1-2 hours of IV corticosteroids to prepare me for the Lemtrada infusion. It describes it as sort of a helpful defence against any reactions during the infusions. Then it’s about 4 hours of the Lemtrada infusion in which I’ll be attached to the IV. And then approximately 1-2 hours of monitoring by the health care team. And then I can go home. It describes possible reactions and side effects like nausea or vomiting, rashes or hives. I read it aloud to Joey, pretending I was brave but we both know I was faking it. I read about being well rested, hydrated and to avoid germs during the first month. During which I’ll be off of work but it reminds me to not isolate myself but to be around friends and family for emotional support. I closed up the booklet and put the binder away. I felt like I couldn’t catch my breath, symptomatic of a panic attack coming on. I waved that fucker off for now. 

I’m well aware of the positive aspects of what this treatment might hold for me. And I know I’m lucky to have been approved to receive it. I also know that the alternative is to risk losing my vision in one or both eyes. And yet, I don’t dread this treatment any less. I’m scared of the prednisone and how it will affect my body.
I’m scared of being nervous before hand and how it will make my stomach sick. 

I’m scared of the night before the first infusion and the morning before I have to leave.

I’m scared of the first pin prick of the needle and watching the Lemtrada enter my body, foreign and unknown.

I’m scared of the discomfort I might face.

I’m scared of the nights during the treatment where Joey will have to worry that I’m okay and not experiencing any serious side effects.

I’m scared of what comes after the infusions have ended, the monthly blood work and staying home.

I’m scared that my absence will cause any unease for the kids in my class. 

I’m scared that the treatment won’t make a difference and I’ll still relapse.

And beyond all the fear, and more than anything else, I’m so fucking angry that I’m afraid of all of these things. I’m pissed off that my natural reaction isn’t to look at the positive or hopeful side.

And I hate that at the end of the day, when the lights are off and I’m disconnected from my friends or family or Joey, 

I’m left alone with the one constant in my life. That’s always been there. The anxiety. Now I can’t find any comfort in it. Like a cruel stranger that won’t leave you alone. 

I just wish i could expel it from my life, like a breath I’ve been holding. 

I’ve never wanted anything more. 
 

Turn your fears into curiosity 

Treatment starts the week of April 17th for 5 days. Finally. I’m excited and scared. I’m excited about the possibilities of this treatment. The possibility that after the treatment I may not have another relapse for awhile. Its weird my anxiety is telling me not to get my hopes up but I think I have to in order to get through this next hurdle. I need to see a light at the end of the tunnel. A friend suggested that after this is completed, I may even have a decent summer devoid of my usual summer-heat unpleasant MS symptoms. And I realized that I was ignoring the possibilities of so many good things because of my fear of all of the bad things that might happen. Now I’m not naive, I know that the 5 infusion days are going to be unpleasant (although family and friends will be there to support me and I cannot thank them enough) but it seems that the bad is all I focus on which is my downfall. I get caught up in the minutiae of every anxious thought. And I let those thoughts lead me astray and into often depressed territory. It’s the downward spiral.  I’m trying to change that. I want to turn my negative experiences into a positive strengthening one where I jump the hurdles, defeat the monsters, slay the dragons and come out of it stronger, braver and hopefully with a few less MS lesions. Who knows maybe I’ll be able to watch a movie or actually read a book again. I’m excited of what might be…

Wish me luck folks. I’ll be updating throughout the infusion process.

Xo

Angela