Post Cushing’s surgery – month 8

This month we had many adventures with HR! It seems they’ve realised this isn’t a ‘get better in a few weeks’ type of illness and are trying to put on a bit more support and understanding, starting with an occupational health therapist.

The OH therapist was mentioned at the start of this month and I have to say, I’ve been impressed all around. It only took 2 weeks to get an appointment so by the middle of this month I was chatting with my physician. I hadn’t been sure what to expect, only that they’d be medically trained but obviously not a specialist in Cushing’s so it was a nice surprise when he was asking me lots of relevant things such as whether I’d had emergency injection training, been told the signs of adrenal crisis and things like that. He even knew the difference between cubital and carpal tunnel syndrome. We spent an hour going over my entire medical history, what my job entails and how I feel about everything.

The outcome was a plan to increase my working hours from 3 afternoons to 5 afternoons a week over 8 weeks and then to have another review. He stated he doesn’t see why I’m not getting telephone follow ups from hospital and told me to chase that plus said I’d probably benefit from some councilling in some form and told me to ask my employer about anything they can do for that as it’s often quicker than the NHS. I had a little cry on the phone to him as it’s overwhelming; no matter how much you type about this sort of thing, to say it out loud always seems surreal and it’s always such a great feeling when someone is trying to help.

Of course hormones love to mess us around even when we’re healthy. I had a rubbish start to the month when ‘that time’ rolled around. I woke up feeling uncomfortable to find I’d bled through a pad and the sheet onto our mattress that’s only 2 months old. This hasn’t happened to me since I was a teenager so I did the adult thing of getting things washed and changed then sat down to a good cry. I then had a strop over a video game I was playing and deleted it from my console and then randomly burst into tears later that evening. What fun!

On a more positive note, I decided to go through my trouser drawer. Before surgery I had a massive clear out and chucked away most of my “before Cushing’s” tops as they were too small and were cheap anyway. My trousers were more expensive so I kept them in the hopes I’d get into them at some point again. Well this was great! One year ago my largest size of trouser was a size 20 and I wore them to a friend’s wedding with the help of an extender band. I tried them on this month and just take a look at the picture! I look like I fill them more than I do thanks to my hernia as well. It sounds silly because I know I’ve lost a lot of weight but looking down, I can’t ‘see’ it. This definitely drove home how much I’ve lost. Just for the record, I’ve lost 50lbs and haven’t been this weight since October 2016, just after my DVT. I’m now wearing stretchy size 12s and have some non-stretchy 12s and a few 10s to aim to get back into one day.

Even with the weird hernia protrusion, it’s ridiculous to think that 1 year ago I could only do these up (barely) with a panel extender

My blood pressure readings have been so low that, as I’m still waiting on my blood pressure endo to see me what with Covid still keeping us in lockdown, my GP agreed to weaning me off the final med. I’m now on half the dose of amlodopine I was on and my readings are staying low. My resting heart rate tends to be between 66 – 72.

My sense of smell and taste are still off. They’re definitely better but I’ll still have times when my boyfriend mentions something smells good that he’s cooking and then 20 minutes later I’ll finally smell it.

The beard, whilst finer and lighter, continues to grow and is really annoying me now. I still tweeze at it regularly but it just doesn’t seem to go away.

Sretchy skinny jeans in size 12! You can see my thin legs here; one of the characteristics of Cushing’s is that your legs and arms don’t gain the fat that your trunk does, so they look super skinny compared to that, whereas ‘normal’ weight gain would also go on the legs and arms.

I’m still managing 30 minutes of clubbercise a week. I still keep it low energy and impact and can’t bounce at all but I can bend my knees a little more and feel stronger doing it. Just walking around the flat one day I felt ‘lighter’ in myself, like it was just easier to carry myself around. I cleaned up the floor around the degu cage and found that my knees were merely painful instead of agonising. Hooray!

I still struggle to focus. Some days are better than others and I feel almost normal again, then I’ll have a day where I can’t concentrate for more than a couple of minutes on anything.

Lockdown is playing into it a lot, particularly mentally. I thought I was prepared for it since I’ve been almost housebound for over a year anyway but I was at least still getting out for medical appointments and the odd social event with a couple of friends. But now I don’t even have that. Medically it makes it easy to worry as well. I’m overdue an SST. What if I’m now producing and my dose of HC is too high? What if I’m having a recurrence? What if my other hormones are totally out of whack? I’m sure everything is fine, I feel fine most of the time, but I don’t know.

I’m desperate to get my other surgeries out of the way too. Supposedly the hospital rang about my hernia appointment at the start of April, but there were no missed calls on my phone so they didn’t. That’s going to be rearranged, I assume in June but have heard nothing yet. I have a call in a few days about my first cubital tunnel surgery so I’ll see what they say but I think it will be put off in favour of hernia surgery being done first. That’s why I’d like to have had the hernia appointment, because I still don’t know if I definitely need surgery for that (though since it’s a large one, I’m pretty certain I will), whereas my elbows are definitely in need of it. Plus I’m overdue a smear and my blood tests to check my kidneys are ok. It’s going to be a busy one medically once services start opening back up!

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