What????

Reader, my rheumatologist never discusses side effects of the medications she gives me. None at all. Not of the pain meds, muscle relaxants, antidepressant for nerve pain, anti inflammatory, nor the big guns we use to try slow the disease down and reduce the disease burden. Never. Except for protecting my stomach with an extra medication as I have chronic gastritis so my anti inflammatory is a problem even more for my already ravaged stomach lining. I understand why, because not taking the medication and the biologics or as in my case now, JAK inhibitors means faster death and before that, disability. So it’s a no brainer. But still…

I knew Sulphasalazine was bad for you and to avoid the sun, but in April it will be a year on Rinvoq. It could have been a year of not knowing that you are meant to avoid the sun! Why? Rinvoq raises the risk of skin cancer and lymphoma. Do you know how scary lymphoma is to me? And it’s so difficult to detect early. It’s bad enough AS itself raises cancer risk anyway and like in my case, has attacked my lungs and kidneys. But now the meds increase other different cancer risks.

Skin cancer. I was checking out my Facebook feed – if I removed you it’s because you’re not acting like a friend and what I’m currently sharing on there is only for friends -and I came down to a post in my Rinvoq support group. And that’s when I found out about the skin cancer. I already have a mole I always knew I should keep an eye on. But though I’ve known to check it since I was a teenager, I haven’t been diligent. I did once take a photo of it -it’s right by my ear so I don’t see it daily, I remember it when it’s itchy which is rarely-but I don’t know where that photo is! And right now it’s dark so any photo I take now while I remember to is going to be unclear.

The woman in the group was asking if it’s ok to use a tanning bed before she travels to a very hot island so she can darken nicely in the sun even though she knows to not be in the sun. Now that, to me as an African who uses nothing to change her appearance, was already a bad idea anyway. Tanning beds are a no no for anyone! And to darken nicely in the sun you should first darken yourself unnaturally? I had no idea that was even a thing white people do. I got plenty dark when we visited my grandparents in their mountainous village without any tanning in a bed first! (And my mother made sure I knew it, making me put milk of magnesium on my face and wear hats so I don’t turn even uglier darker than I already was.)

But I also didn’t know the skin cancer risk! I checked and yep, you are told to avoid sunlight, and if you do have to be in the sun, to use sunscreen with a high SPF. And the one I do already do, to wear protective clothing – long sleeves and bottoms to cover your skin from the sun’s rays and of course, to wear a large wide brimmed hat or peaked cap. I didn’t know.

I had been feeling guilty that I was too busy to be out in the sun for longer than it takes to hang and bring down, hang and bring down two loads of laundry. But it’s actually GOOD! I did buy sunscreen when I first heard of skin cancer decades ago when it came out that Bob Marley had it under his toenail despite being Black. Popular wisdom had said Black people don’t need sunscreen. I also knew that though our risk is lower than that of white people, we have worse outcomes because our skin tone itself stops us catching the signs fast enough and so when Black people realise they have skin cancer, it’s more advanced and the prognosis very poor. For white folk, the 5 year survival rate is 94% vs 70% for Black.

How did I not know the skin cancer thing? I can actively try avoid the sun like I actively (with my N95 mask) avoid catching viral respiratory infections! I believe it’s better to tell us of the diseases we can try reduce the risks of. I can also check my skin more often. Our skin cancer often presents differently to that of pale folk. I’ll be more diligent from today!

Here’s a random photo of me.😅

I turn 46 this year folk! I have survived. I went from praying to die due to extreme AS pain to being grateful I am alive each new day. My children need me. And though it’s hard to force a smile on my face, this mother has no choice. Not only because it’s a principle I glean spiritually, but also I have seen the damage of an emotionally absent mother in my diaghetr’s birth sister. So even when the AS fatigue hits hard and the pain has built from a busy day, the smile comes on even when the tears want to spring out instead when especially my talkative six year old comes often wanting me to download some random wild animal video “NOW!” (Pathological demand avoidance is stressful even for us who support the ones who have it!)