Ego vs Quality of Life: Back on Chemo

Medications

I began taking oral chemotherapy in August 2017 after being diagnosed with Rheumatoid Arthritis. This diagnosis came after over half a year of rapidly progressing Chronic Pain, which started at my right foot, and traveled to most major joints in my body. By the time I finally got my diagnosis, many smaller joints like my fingers and even my jaw were affected.

I have been taking Methotrexate since then, and my body has reacted brilliantly to it. Which is great, because the alternative was a bio-based treatment for $50,000/yr (before insurance) where I had to give myself a shot every week or two.

Some affected “fat” joints.

But being a low-dose chemotherapy treatment, it isn’t good for my body. I have to get frequent blood tests to make sure my liver isn’t being damaged, I can’t drink because of the liver damage, it causes fatigue, mouth ulcers, and I can’t become pregnant while it is in my system.

I wore “socks” on joints that ached too much, for compression.

The road to diagnosis was long for me, but a short one for the general average. Many people spend years trying to get diagnosed, because autoimmune disorders mainly affect women, and are not taken seriously.

The first doctor I was going to for a few months while trying to get a treatment plan and diagnosis told me straight out that he thought I was making up my pain for attention, and that he didn’t see anything wrong with me. I’m sure even you can see there was something clearly wrong with me just from the few photographs I have uploaded on this post!

Example of an affected joint before chemo.

I finally found a doctor who took one look at me and sent a referral in to a Rheumatologist to be seen ASAP. And at that point, over half a year after I began having symptoms, I was finally diagnosed and prescribed medication to try to manage my symptoms.

Within months… Or even weeks, I saw progress. I was able to walk, I was able to get out of bed, and open the bedroom door without crying. I was able to get changed without spending 5 minutes to slowly push my clothes on and off over my aching joints. I was able to straighten my elbow, which was filled with fluid and was unable to unfold for months.

I could almost pretend that there was not much wrong with me except some aches and fatigue when I “flared up” periodically. “Normal,” of course, except my exorbitant medical bills and the fact that I was taking weekly dose of chemo.

Getting off Chemo

A year and a half later, having gone to almost maximum dosage for a while, got great results, and have been tapering back my dosage for another while, I decided (with doctor approval, of course) to try to see if I can go off Methotrexate. If I can, and my symptoms didn’t reappear, I can officially say I’m in remission.

How my hand looked when I stopped chemotherapy.

I took my last dosage of Methotrexate (minimum dosage of 3 pills) on January 31st. It’s been a few weeks, and I’ve been experiencing aches here and there, and in areas that weren’t aching previously.

I had to have dialogue with myself. I wanted to be off the medication. I wanted to prove I’m in remission, that I’ve “beat” Rheumatoid Arthritis. I wanted to say I conquered it, after a year and a half. But I realized it’s all ego. At what point, is it enough discomfort and pain to warrant being back on medication? Is it back to where I can’t handle the thought of another day, like I was a year and a half ago? Is it enough discomfort where I feel uncomfortable going to the gym? Is it where I can’t pick up heavy things because of the pain?

It was all ego. I wanted to believe so badly that I’d “beaten” it. But it’s not about ego, and it’s not about “beating” anything. I should’ve realized this with my Brain Injury journey. It’s how I live with my body as it is. To accommodate my ecosystem and use whatever tools available to me to live comfortably, live well, and thrive.

I can’t thrive if I’m in pain. There are no gold stars for biting back pain every day and going to the gym despite the pain. I don’t get any high fives for suffering through chronic pain and fatigue.

I can accomplish something with or without pain, and just because I was in pain while doing it doesn’t make what I created any more or less. It just means I had to suffer while doing it.

So with my ego in check, and my desire to get back in shape and healthier as well as being productive overweighing my desire to say “I beat Rheumatoid Arthritis!” I took my first dose of Methotrexate last night.

It’ll take another few weeks for my body to take the drug in, process it, and start taking my pain and inflammations away. But at that point, I won’t have to worry about finding my compression gloves and sleeves. I won’t have to consider whether to go to the gym and suffer through the pain, or “let my joints rest.” I won’t have to think twice about picking up the boiling pot, wondering if my elbow and fingers won’t be able to take the weight and I’ll burn myself dropping it.

I’ve “Lost” yet again to Rheumatoid Arthritis and my body, but it’s not about winning. It’s about my quality of life and what I am able to do because I “Lost.”

Vascular Malformations and Other Brain Stuff

On a more positive note, I had a phone call from my neurologist after recent MRI and MRA scans, and he told me that he didn’t see any abnormalities or growths, so I am still officially Brain Aneurysm and Arteriovenous Malformation free. One less huge thing to worry about as I tackle Rheumatoid Arthritis with a vengeance!

Brain Injury

I was kind of hoping that my Brain Injury has kind of healed over or SOMETHING after 7 years, especially because I’ve been functioning so well, but looks like dead is dead. Oh well.

The white/black area in the top right of the brain scan to the right are the “dead” parts of my brain, which is the source of my Brain Injury.

It’s the frontal lobe, which is responsible for executive functioning, mood, personality, memory, amongst other things. Basically, it’s the area that makes You… You.

By the way, “Vascular Malformation” means “Disorders of the Blood Vessels.” This includes things like Brain Aneurysms and what I had, Arteriovenous Malformation.

Comments

    1. Post
      Author
      Zero

      Ahhhhhh. Yes I can imagine. But honestly we don’t get any brownie points for suffering through unnecessary pain… So we need to stop being such masochists!!! Haha.

  1. Revanche @ A Gai Shan Life

    I don’t know why we collectively have such a strong tendency to want to prove something to ourselves (or others? I don’t know!) by being off medications even when it can make us miserable, when the medications aren’t as harmful as the ones you’ve had to be on. Seems like we should be grateful for the tools at hand?

    But in your case, I definitely understand the longing to be off those meds if at all possible. I was diagnosed with RA and on similar meds for a long time because all my symptoms lined up except for one crucial one. It wasn’t awesome, I didn’t respond well to the methotrexate.

    I’m glad you’re choosing your quality of life right now and hope that you’ll have the options to take different and better choices in the future.

    1. Post
      Author
      Zero

      I’ve no idea why we’re all so glutton for punishment! 😛 I would never recommend people get off mood stabilizers if they aren’t ready/it doesn’t serve them, so I don’t know why I think I need to be off chemo! (Though to be fair, the side effects are pretty bad for long term use, it seems like…) I am really happy that I even have treatments that work though. I know so many people for which their bodies just don’t react well to the treatments their doctors are prescribing. So I definitely have better end of the stick here! I hope too that in a little while, and with more mindfulness, I can try again. But no rush anymore. 🙂

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