Acts of love

I know if I’m to stay as healthy as possible, with all the challenges I have, taking care of myself properly is an act of love. Hating my body won’t work. I need to eat well, exercise as much as my disability allows, sleep enough and take time out to rest.
Dylusions supplies: small journal. Paint: Black marble, Pomegranate seed, Cherry pie. Stencils: Small stars & Star struck. Stamps: Dy’s alphabet.
Other: Tim Holtz tall letter stamps, Pitt big brush pen, white gel pen, Distress ink, Ranger Distress collage medium.

love your body 20190818

Being an adult means self-care

Self-care. It’s not all yoga, warm baths and getting your nails done with your bff. It can mean harder stuff, like cervical smears (thank goodness I don’t have to anymore), mammograms, exercising even when you don’t want to and a squillion other ‘not so fun’ things. 

A couple of years ago my Dr and I talked about a ‘thing’ on the side of my face. Should we cut it out? Well, maybe, but very near the nerve that controls your face, and also right by my ear so it would sound yuk! We opted to try a topical treatment used for cancer spots. Yeah nah!! It didn’t budge even a millimetre. 

I did what any sensible adult would do. I ignored it. Only now it’s got worse. I can hear my mother saying, “I told you so”.  

Trouble is a few years back I had a lump cut out of the back of my thigh. Five minute job, Cath, you’ll be fine. Except the Dr couldn’t get to the bottom of the lump and, 35 minutes in, had to inject more pain relief so he could keep digging. So, I have good reason to be a sook about it, kind of…

 

Anyway, just now I have logged onto managemyhealth and made an appointment with my fa Dr to get a referral to a skin specialist so it can be removed. Can anyone recommend a favourite brand of brave pills?

self-care-2904778_1920.jpg

A balancing act

Recently someone contacted me regarding the local newspaper and I felt the need to explain I have little spare time (not that they had pressured me at all – the need was in my own head). That said, my life is a bit of a juggling act, and I’m fortunate to have the support I need to keep the balance. Tony has always supported me to do my art and be involved in the wider library profession, and my family and friends support me in myriad ways.

What’s going on in my life? Here’s a snapshot of most, but not all, the things:

  • I work fulltime as Libraries & Cultural Services Manager at STDC; I manage 7 libraries, the museum and an arts position
  • I’m Chair of the Professional Registration Board with LIANZA, which means I’m also ex officio to the LIANZA Council
  • I’m 3/4 of the way through the Papa Reo course with Te Wananga o Aotearoa
  • I mentor a couple of librarians around the country
  • I have a month long art exhibition coming up October with the lovely and talented Dimmie
  • I travel for work, and art, fairly regularly
  • I teach art classes locally, and am teaching in the South Island in July
  • Tony and I publish the local monthly newspaper
  • I have some ongoing health issues, and am waiting on a 3rd MRI (2nd on my spine)
  • I’m a food addict and, following weight loss surgery, need to make sure I do the right things every single day
  • Tony has some serious ongoing health issues which are increasingly restrictive
  • Tony has PoA for his cousin who has dementia, and I support him in this

Don’t get me wrong – Tony and I have a good life; we’re fortunate and this busyness is my (our) choosing. But the health issues are an unwelcome complication that mean I make sure we both get enough rest, and there’s “uh oh” flexi-time built into our schedules. Taking anything else on just isn’t a goer for now.

Tony & I 20190504

When angels run interference

Anyone who follows me knows I don’t believe in God but do believe there’s a universal power and that angels watch over me. Sometimes the angels run interference – like yesterday…

Short version of long tale. Took Tony to Hamilton to see the specialist yesterday as his legs are so sore and swollen it’s affecting his mobility and quality of life. 3 out of 4 Drs were called away so they were running 90 minutes late, but it meant we saw Vasu, his main surgeon, not an understudy. He listened, understood, agreed with me that Tony’s heart and kidneys need checking – because everyone gets fixated on his legs. I said I was concerned we’d come home and be back to square one because our Drs are nice but not hearing me. Vasu said “no, you’re dealing with me from now on and I’ll speak to our top cardiologist”. He gave us an x-ray form, and said they’ll be in touch. Angels #1.

While we were waiting, a woman came out of the ward and I was “omg it’s JEN!”. Jen R is doing a “kick ass battle” with cancer – to use her term – and was starting chemo last night. We’re online friends for various reasons but hadn’t met in person. I leapt up and hugged her hard, laughing, then hugged her some more.  Angels #2.

Archangel Michael, you rock!

Off to the surgeon

Some specialists are always going to be very formal, “Hi I’m Mr X”. Tomorrow we’re visiting Tony’s vascular surgeon in Waikato. He first operated on Tony in 2012 and has done 7, or is it 8, surgeries since then. We’re on first names basis with Vasu these days!

Tony has peripheral vascular disease. He had a small clot removed in the 1990s and was good until 2012. The first surgery with Vasu was to remove a 20cm clot. He has a ‘fem fem crossover’ so basically an artificial artery that takes blood from his good leg, across his groin, and down into his bad leg ending up in his lower calf. The artificial artery has been cleaned out a couple of times and also replaced.

His bad (left) leg is increasingly painful and swollen, and his good leg is playing copycat unfortunately. They can only fix one leg this way, so there’s not a lot can be done for the right leg. But, as always, we’re hopeful Vasu will have one more trick up his sleeve.

Once ‘we can fix it’ surgeries are no longer an option we’re left with pain relief and eventually amputation either due to complete loss of circulation or if it’s the best option for quality of life. Hopefully that’s a long way off yet. In the meantime we’re looking for better pain control, and perhaps even remedial surgery. Fingers crossed.

This photo is from his 2014 surgery.tonys-hand.jpg

#BlogJune

For the last few years I have joined #BlogJune on Twitter. It’s one of those challenges that you can do, sort of do or even not do, and no one minds.

I’ve previously posted from my professional blog but – for all kinds of reasons – I’m not using that for now. With my library blog, I find regular writing is good for thinking about issues, but I’m not currently sharing those thoughts with the wider profession. 

I like #BlogJune because it gets me posting more regularly. My focus this year is art, family, health, disability etc so I’m going to try and post once a day on this blog instead. Sometimes it’ll be an image from my art journals, other posts will be about our changing lives, or what the pets are doing – so a mix of miscellaneous nonsense and the occasional deep and (hopefully) meaningful ramble.

If you want to join in, go for it. You don’t need to be on Twitter, you can just write and post the link anywhere with the hashtag and people are bound to find you. Following the hashtag can be a fun way to find new people to follow too. 

 

zz blog

I actually paper crafted!

I have been doing a weekly art journal page, and some knitting, since my last hospital trip but haven’t really had the energy for paper crafts. I miss it and know doing art is good for me – but the thought of packing and unpacking and just *doing* has been too much. Until today…

I only managed three cards, but that feels like quite an achievement. I used my Stampotique stamps on Stampin’ Up cardstock, and for one I used a Distress Oxide background. The hare was originally on a plain background but I stuck some text on, didn’t like it, removed the text and tore the card base. I was going to throw it out, then thought better of it and just kept going – I think it turned out ok. Are they fairly basic? Yes, but a good feeling all the same.

CMP17 week 28

I’m right back on track with my CMP art journaling and it feels great. Now to get some crafting time in, because that’s part of me being truly well again. I’m not physically 100% yet but I’m getting there – and tending to my mental health is part of the healing process. If I’m not doing art and craft, there’s no way I am totally well…

This page screamed out for glitter, but I don’t use the mucky stuff. What I do have tucked away is some Pipe Dreamink Opals embossing powder – perfect!

week 28

 

Turning into Darth Vader

A few days after I got out of ICU and HDU my voice became very quiet and husky for no apparent reason. If I try too hard to get real volume, or say a lot at once, or even talk too fast, I can get a bit dizzy. The doctors didn’t seem too concerned and thought it would come right in a few days.

My own Doctor thought it was inflammation from being intubated and said if it wasn’t right by the end of the month I’d need to see a specialist.

When I saw Mr Glenn Farrynt, to get the results of the MRI of my bowel, he strongly recommended more surgery otherwise there is a chance of another obstruction. I wanted to wait until I felt stronger but he said it was much riskier to operate with an obstruction because it makes me so sick.

His only hesitation was my voice; he wanted me to see an ENT urgently to ensure my airway was safe. In the meantime, he set a tentative date of 19 June for exploratory surgery and to fix whatever they found at the same time.

I saw the ENT, Mr Wayne Butt, on June 6. He put a camera up my nose and into my airway – which was as awful as it sounds. I’d said I wouldn’t let them do that, but he was so nice and gentle I didn’t feel I could refuse! My left vocal cord is totally paralysed, which explains my voice. He said even with heavy sedation it is rare to aspirate so he feels my airway can’t be trusted for now, especially as we also don’t know what caused the paralysis but have to assume it was damaged during intubation. He wants to see me again in three months because he’s hopeful my airway will heal on its own. There is nothing they can do it repair it but, if it doesn’t heal, they can improve my voice.

One thing we haven’t explored yet, which might explain a lot, is that since I came out of hospital my left foot sort of thumps down, particularly when I’m tired. I also tend to rest my left hand in my lap some of the time. There’s been some talk of a small stroke, but I didn’t want to explore the possibility. I might need to now, if it explains the vocal cord paralysis.

All I can say is, I have earned every single kilo I have lost. If anyone thinks surgery is an easy way out, I have news for them…

orange jersey

 

 

One week post-surgery

I had my weight loss surgery last Friday in Wellington. Dr Dhabuwala and I had planned on a Roux-En-Y Gastric Bypass (REYGB) but we knew scar tissue from a difficult hysterectomy 20+ years ago might be an issue, and it was. I ended up with a Single Anastomosis Gastric Bypass. It’s popular overseas for a number of reasons but not in New Zealand yet. The good news is that he was able to undo some of the old adhesions at the same time, which should relieve some of the ongoing pain.

They made 6 ports (holes) and because of the scarring there was a lot of pushing and poking but I have experienced little pain, mainly discomfort. I was up the next morning and in the shower, then walking the corridor from time to time. My blood pressure kept dropping and at one stage they thought there might be a leak but it came right – I am still on only half the blood pressure medication I went in on.

Ailsa was with me for the surgery and spent 3 days at home with Tony and I helping me get the food organised as there’s a lot of fluffing around initially. She also exercised her stomach muscles getting the anti-clot stockings on me each morning! We could not have done it without her and I’m so grateful. My best friend Sandra was, as always, there with me in spirit.

For the first two weeks I can eat 4 teaspoons of high protein food three times a day. Initially I was only managing two teaspoons and couldn’t finish ½ a Cruskit. At week 3 the food increases slightly, and again in week 4. So far all the foods I’m supposed to try have been fine, except for the vanilla yoghurt in the hospital which made me feel awful. Oddly, I don’t want anything that has much flavor at all. I am *not* hungry at all – my appetite has totally been turned off which is a huge relief.

dinner

A typical meal. The cup is a tiny espresso one.

 

I lost 10kg in four weeks’ pre-surgery, which was essential, and have lost 4.5kg this week. I’m a bit tired, but other than that I’m good.

changing-face

Two days ago on the left, with flowers from work, and in June on the right.