Switched On – #Lupus Diaries 

I’ve had a melancholic few days. It’s probably a wind down from a weekend full of activities. My family had a fundraiser to try and add to what we’ve got so I can go back to India and hopefully finish my treatment. A bunch of my friends came through as well. There was just the right dose of family drama, too.

I stayed on adrenaline high because the night before and the night after my friends slept over, and the Sunday after the fundraiser saw me join them at a garden party not far from where we live. That means I was ‘switched on’ for nearly 48 hours! I zonked out on Monday, and only woke up to accompany mum on post fundraiser errands. I was so exhausted I just slept the whole way to and back.

Then Tuesday woke me up with red all over. Because I have Sjorgrens, nosebleeds are not entirely surprising. When the nasal mucous membranes dry out, cracks form and the tiny blood vessels can start to break. Usually, I see a speck of blood when I try to blow my nose. But this was full on steady stream bleeding. 

Nosebleeds can be scary. But usually they are not serious as long as you can stop them and they don’t happen a lot. Why is it a concern for me? Because I just completed a cycle of Chemotherapy, which although lupus chemotherapy is mild, causes some damage to blood cells and can result in anemia and jaundice.

I had my liver enzyme test 2 weeks ago and levels were off. If I wasn’t at the end of my cycle, the doctor would have discontinued the treatment. Since I was at the end, my instructions are to rest, eat well, exercise moderately and take my folic acid. Folic acid helps protect and repair cells – simple version of the explanation.

Since this cycle of Lupus therapy started, I’ve seen some changes, less pain, less brain fog and so on. I keep remembering what my doctor said, that Lupus is a lifelong illness and care is a lifelong endevour, so I don’t expect Lupus to go away right now. 

There are so many other aspects of my care that couldn’t be addressed initially because controlling Lupus was the first concern. I suspect they my heart is still malfunctioning. I still have Cushingoid features, as well as PCOS syndrome, both of which would wreck havoc on your life even without further complications.

I think I’m learning to live with uncertainties. I can’t say I’m not anxious. I definitely am. I worry about money, my mum, my dog, my people…. I worry. I worry because I’m not the carefree little girl who loved to travel anymore. I hate traveling. I hate airports. I hate the compressed air in planes. I hate flights. I hate customs and immigration officials. I hate feeling so sick I can’t appreciate or negotiate the beauty of a new country. I’m learning to live with them, but I worry.

I’m not sure if the worry precipitated the nosebleeds, or simply aggravated them. So I’m here offloading before I head off to go find my zen.

If everything goes according to plan, this time next week I’ll probably be back in New Delhi, India. The plan is to retest, see how much progress I’ve made. Then we’ll draw up a battle plan. This time we might include a few of the secondary issues to be addressed.

I am hoping a lot of things, and I understand that I am vague in so many ways. I just hope that what I am sharing will be useful to someone who might have to go through a similar journey. I can only hope.

Until another time,

Love and Light,

J

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