Happiness Just Depends on How You See the World: Plasma Exchange Update, April 18, 2015

I underwent another round of treatment yesterday and things went worse than usual, I will elaborate on this with more detail. There will also be a short term shake up with my treatment frequency. Despite this, I just wanted to share that even though I’m sick and have to undergo such invasive and draining therapy, I am still happy. I am probably happier than the average healthy person. While there are many things that I am unable to do, there are so many things that I am ABLE to do. Let me explain by telling you about yesterday’s treatment day – I’ll share the good, the bad and the ugly!

My day began by going to my neurologist’s office. I have been having unbearable migraines lately, the kinds that make me wish that I was in a temporary medically induced coma. Alternately, I’d be totally okay with being shot with by a tranquilizer gun so I’d be sedated until the pain passes. We’ve decided to try to tackle my migraines by going up from Gabapentin 300mg x 3 times a day to Gabapentin 600mg x 3 times a day. This is the kind of medication with side effects such as “continuous, uncontrolled, back-and-forth, or rolling eye movements”, dementia and ironically pain. The fact that I’m taking medication like this truly shows how bad my migraines have gotten. Fortunately, with the lower dose that I’ve been on, I’ve had no side effects. I hope it stays this way as I increase my dosage. I’ve also been using this drug to treat my neuropathy pain as well, it works much better than Lyrica! At this point, I’d say the score was Chronic Illness 1 – Samanta 0.

I came home and finished my assignment, which I am quite proud of. My boyfriend came over at that point to take me to my Plasma Exchange appointment, and these Game of Thrones gifts came with him.

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I was very happy. Chronic Illness 1 – Samanta 2.

Before heading to the hospital, my boyfriend took me to the HBO Toronto Pop Up Shop, it’s here as a promotion for the network’s show, Game of Thrones. There was a replica IRON THRONE in the store.. my levels of sheer joy and excitement caused me to hyperventilate. You know what was more thrilling than simply seeing the Iron Throne? I GOT TO SIT ON IT.

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By this point, the score was Chronic Illness 1 – Samanta 7. Yes, the Iron Throne gets 5 points, it’s just THAT epic.

We then made our way to the hospital. The fact that I’m in a hospital and get stabbed with giant needles brings us to Chronic Illness 3 – Samanta 7. Studying on a stretcher definitely isn’t easy either. There’s NO room for all of my things. I have exams coming up and papers to write… it’s a true fight and struggle to be chronically ill, undergoing treatment AND going to school. So here we are, Chronic Illness 4 – Samanta 7.

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I got all set up, and treatment began. Things were going well – at first. I was able to work and the supervising Plasma Exchange hematologist came by to see me. We decided that I will be doing treatment 2 times/week for the next 3 weeks. While I am happy about this, it is frustrating because it takes away from my time to study. Hopefully though, this means that I will be less exhausted and be in less pain so there’s less downtime overall where I cannot work. The score stays the same.

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As treatment went on, I was doing well. I was getting work done. But then my lips began tingly and my head felt weird. It was like I was coming off of a high, but in a bad way. My head felt light, but I wasn’t light headed. The exhaustion hit. I went from typing up a paper, to only being able to just use one hand to click. It got worse though, so I put on an episode of Grey’s Anatomy and sat back. But the exhaustion kept getting worse. You know you’re not doing well when you’re too out of it to watch TV. Nausea set in and I was convinced that I’d throw up. I didn’t, but even if I did, I didn’t have it in me to speak to my nurse and ask for a barf bag. I just couldn’t keep my eyes open at that point and kind of fell asleep. I was kind of asleep but I guess kind of awake, my head was in a strange place. As I got my blood back at the end of treatment, I began feeling kind of better. We took the needles out and I was getting ready to leave but my port just wouldn’t stop bleeding. We got it under control, but damn I have no idea why I had such a bad round of treatment.

The score is now Chronic Illness 14 – Samanta 8.

On my way home, I began doing better, especially when I put my legs up on the dashboard which helped my tachycardia and blood pressure. My resting pulse now sits between 100 – 115 beats/minute for the most part, which is a HUGE improvement from having it 125+ a month or two ago. For amount a month now, I have less neuropathy pain, despite my short term increase in joint pain. I can eat more. I am not always chronically nauseated, unless I have a migraine. While my symptoms are still plateaued, I am better than what I started with pre-Plasma Exchange.

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We stopped by the comic book store, and the owner let me sit on his comfy chair behind the counter and gave me a banana. His dogs jumped on me and played with me, it was nice. I basically sweat through my clothes at that point and thus headed home.

Final score, Chronic Illness 15 – Samanta 10. Technically speaking, my chronic illness won.

This being said, I’d honestly rate my day as Chronic Illness 5 – Samanta 20. I had a great day, no, a wonderful day. I was happy. There were a lot more things that I could have complained about and counted as more points towards my chronic illness; the heat made me feel worse, I was having post-treatment shortness of breath, I started getting congested yesterday, I was unable to finish as much work as I wanted and more. The score should have been at least Chronic Illness 25 – Samanta 10 if I counted every aspect of where my diseases made my day harder.

However, I think back about my day as I got to sit on the Iron Throne, I got amazing gifts, it finally feels like spring, I got to play with dogs yesterday, I just happened to get some treatment done in the middle of this. I wore a dress and I found a way to make my compression stockings look fashionable. Treatment was tolling but I honestly don’t even think of it as a big part of my day. It was just something I did in the midst of all the fun stuff that I did yesterday. Yes, I can look back on it and think wow treatment went horribly and have that could cloud up all of the good things that happened in my day, but what’s the point? There will always be something wrong with me, there isn’t a day that goes by where my illness doesn’t control at least part of my day. I guess if you look at it, all of my days are bad days. If I kept score, my chronic illness would always win. But the way I see it, I feel like I won. With so many bad things happening in our lives, it’s important to celebrate small achievements, because that’s the only way we can get by without viewing our lives as chaos and misery. I’m not saying that you can’t be sad and complain, it’s not unreasonable considering that fact that bad things ARE happening to us. Being frustrated about it is a natural, expected and human reaction. I’m just saying that there’s a difference in being sad sometimes versus wallowing in pity endlessly. You can be happy despite chronic illness overall, you just need to change the way that you see the world.

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