October 2018 – MJ Writes

The B Word

Benign.

The relief is incredible.

It has been a week after having my easy bake oven removed in quite the unexpected hysterectomy. I am now on bedrest, able to breathe and collecting my thoughts over the week that was and catching up with my Real Housewives friends of the OC variety. Fortunately, there was nothing insidious in my results, and after a few weeks, I should be back on the paddleboard board minus some core muscles.

The last week’s wait has highlighted that I need to get my houses in order, physical and metaphorical. I don’t have a current will, life insurance has been on a to-do list since Luke Perry was a boy and while I have the financials kind of organised thanks to the Barefoot Investor and my Mojo savings account. I really should have been in a better position for an emergency where I won’t be able to attend work for a period .20/20 hindsight.

I share my home with my teenage daughter who also has a history of chronic illness, and despite having the same employer for five years, my leave is eaten up with illness either for my flares or hers, her appointments or mine. Just like Lunch Money Lewis; I got bills I gotta pay. When I decided to go on this journey solo and leave my marriage with an illness, I was very future focused. I have bought my small retirement home first and will be renovating it for accessibility. I study in an area that will give more flexible work arrangements. However, I have projected so far into the future that I haven’t set up my back up plans, for now, next week or next year.

A Sociomedical Profile of Rheumatoid Arthritis states that “Work disability appears to be the most important sociomedical impact of rheumatoid arthritis since it is associated with significantly greater income and psychosocial losses.” While I am still very mobile and my pain and inflammation is being managed, in the last year alone I have required three separate MRIs, brain, pelvis and spine. Countless imaging appointments. A handful of CT guided injections. Regular and emergency appointments with rheumatologist and GP, a trip to Emergency – thankfully not via ambulance. When you combine this with my daughter’s unrelated chronic illness, appointments, school absences, medical tests and surgery my leave entitlements are eaten faster than cookies by the Cookie Monster. Nom nom nom nom. And of course, these all cost money. I have fortunately located a bulk billing imaging centre that also can administer injections. Thank you, Medicare! While I do get a reasonable amount back from private health and Medicare gap payments, bar MRI’s it really adds up. It’s probably a good thing that I don’t have holidays accrued as I can’t afford them anyway!

However, I can get smarter, comparing life insurance and health insurance, early access to superannuation, saving more effectively, I have tools and resources. Fortunately, I have four weeks rest giving me plenty of time! This un-regularly scheduled health issue may have been brought to me by my uterus, not my joints. But as a spoonie. I should have been more prepared.

The C Word

Before I start – this blog is a university project. I am studying a Bachelor of Arts with a double major; Internet Communications and Professional Writing. In a past life I was a blogger with a little following and this assignment has reminded me of how much I enjoy it. Along with some of my peers, I will be making the odd non-graded, not so grammatically correct entry now and in the future, and expanding the basis of the blog. Mostly for myself as an accountability exercise and to communicate with the extended spoonie community.

In my RA life I have had the greatest fortune to have biologics treatment. Without it I don’t believe I would be walking — but it does come with risk. When I was first prescribed biologics I was warned by my Rhuemy that it can increase the likelihood of cancer, especially skin cancer. The epic Photoshop job I have done on my avatar hints at what I look like IRL but I resemble an older version of Pippy Longstocking. Ginger twinges and freckles for days. The good news is that research over the last few years has indicated that the risk is not as high as once thought and that it may be our chronic inflammation that increases our chances of cancer. Either way, we still need to be mindful and pay close attention.

This is where I have made a bit of a boo boo.

One of the symptoms I have is chronic hip pain. Most people with arthritis will have it and we apply our lotions, get injections and go on living. While my other symptoms have waxed and waned, the hip pain has been persistent and worse. At my last visit with the Rhuemy he was perplexed as to why it was still happening. MRI’s and scans were okay. When I pointed to the region where the pain comes from he wanted to check my ovaries for referred pain.

Some more internal *shudder* and external ultrasounds and cat scans show that I have fibroids scattered about the shop but one large lesion or mass where the pain is. We are super hopeful that is just another harmless fibroid and I should have an answer to that very soon. Hopefully today.

I am quietly shitting myself. I caught an interview on Life Matters during this process about ovarian cancer. It’s a scary mofo with not great odds with a max of 5 years, and as a woman, I know very little about it. I check my boobs, I get the schmears. Ovaries? I dunno ¯\_(ツ)_/¯ Aside from the catch and release, I’m not that up on them.

What gets me about this whole scenario is that because I put so much down to symptoms of my disease I may have missed something. Something huge. Like a tennis ball. Ok so not that huge, but huge for your insides.

I have an appointment today with a gynaecologist oncologist, one of only two where I live. Give it up for private health insurance. Today’s outcome could be anything from a pat on the head to a surgery which could then result in a pat on the head or a timeline.

In my head, I have prepared for every scenario including the clichéd bucket list. Dramatic I know.

But this is something that I have learned this week. My life is affected by chronic illness and the point of Kicking Hoops is to inspire to make the most of it. I have an acute understanding that my life has limits, whether it be activity, travel, where I can live, what I can eat. This week has reminded me that life is finite and I have not been treating it that way.

Why aren’t I living near the beach – or at least saving for it.
Why am I spending money on takeaway coffee rather than holidays?
Why do I worry so much about what people think?
Why do I have so much crap?
Why don’t I rollerskate?
Why so serious?

I look back over the last few years and all I can see is wasted time, money and opportunities. No matter the outcome today I want to hold on to that fear—but perhaps dress it up as knowledge— and start living my life, for me and those that matter.

A beautiful friend who also had a c word scare recently was explaining to me about how her perspective on life has changed. She referred to her life as her little life and how her primary focus is about her family, and the little things she gets joy from. I hope like her this is nothing more than a scare — but that like her, the lesson remains.

I also hope to be living in a beach house.

Note: I wrote this yesterday. My appointment didn’t give me the answers I wanted and I am scheduled in for a hysterectomy next week. I will have results a week later.

This is my Shitless List I wrote in the waiting room. I don’t like cliches.

Forest Bathing and Dr Who

If there is one thing we can trust Scotland to get dead-on it is the best Doctor. David Tenant — am I right?

Time Lords aside, the other doctors in Scotland of the GP variety have recently teamed up with the National Health Service in Shetland to prescribe nature to patients with chronic illness. Along with their scripts and tips, patients will be given a list of seasonal activities to complement their treatment in a non-drug effort to reduce symptoms and assist their mental and physical health.

This October our Scottish friends are being encouraged to help their neighbours with their tatties (potatoes- I googled) and to find a “grottie-buckie” on the beach. Here in Australia our tattie seasons are a little different and we call our grottie-buckies cowrie shells, but the sentiment is the same. Find a reason to go outside, and in the words of my mother. Stay there.

We Spoonies are well aware of the benefits of nature for our various afflictions and are often told to head into the great outdoors, however, it can be a bit of a struggle to move out from underneath the blankets and the heat packs and go outside – where there is no Season 3 of The Good Place. Walking aids are a hassle, walking itself can be a hassle. There are people out there.

I am fortunate enough to live right near many walking trails and have been interested in the Japanese concept of Shinrin-yoku or Forest Bathing for a few years. The great thing about Forest Bathing is you don’t even need to move that much to get the benefits. Simply sitting and immersing yourself in nature a few times a week is enough to feel the benefits and a trip to the local park is as beneficial as the Amazon Forest — with the added benefit of no anacondas.

As a part of Kicking Hoops and Shooting Goals I have added hiking to things that I totally do now and I love it. I’m nerding out on wildflowers, checking out walking poles and actually peopling with strangers. Hikers are a chatty bunch.

As per the point of Kicking Hoops I am only doing what I can with what I have got. It depends on the day and it’s at my own pace for me. 5 minutes of sitting counts as much as 5 hours of walking and on some days the sitting will serve more purpose. Really it’s all just a big ball of wibbly-wobbly… timey-wimey… stuff anyways.

Allons–y!

Side Selfies and Word Porn

The Internet is the gift that keeps on giving. Lolcatz and Grumpy Cats, the home of Chuck Norris facts. Challenges involving cinnamon and ice buckets, dubious dance moves of the dabbing and flossing variety.

In addition to the memes and the challenges — and the dances banned from my house — the World Wide Web also provides us with a global community where we can share our experiences with chronic illness. It’s an isolating experience where our friends and family don’t quite understand (as much as they try), however international strangers can support you in a virtual intimacy that is hard to replicate in our everyday reality.

Our social media groups are not for the fainthearted. Administrators pop into threads exclaiming ‘Gentle reminder, we aren’t medical professionals!’ while we all plough on comparing lumps and bumps, pulling back eyelids to show the latest uveitis flare, rashes and bruises around injection sites. Ankles spill over trainers and kneecaps are lost in swollen joints. TMI warnings reserved only for boobs, bums and nudie time dysfunction.

A common sight is the side on selfie, or the written post equivalent. This is when a Spoonie is at breaking point, comments are of the ‘gentle hugs’ variety, Snoopy is the current GIF du jour and we all lament together about our awful diseases. Suicide posts are common and members rally to find a poster’s location if our R U OK messages are unanswered.Continue reading “Side Selfies and Word Porn”