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My CRPS Journey — Complex Regional Pain Syndrome

Allow me to introduce myself.

Jacinda. Young. ish. Well, in my h-hm-early forties.

I’ve had jutty-outty bones on my feet since I can remember. These bothered me every winter so finally I decided to do something about it. Medical insurance in tow, and a visit with a top surgeon who said I’ve got a bit of a bunion going on and I was booked for surgery for 27 January 2015.

I went in blindly. My surgeon didn’t talk much about a recovery period or what to expect.

My bunion surgery was awful. I had not experienced pain like it. Neither had I ever been so debilitated in my life. I went through four weeks of being quite useless to anyone on my back with foot elevated. Being nursed, using crutches to get 4 metres to the toilet. Bathing infrequently because it was so darned difficult. Spaced out on morphine, codeine, and other things that ended with -ine.

After week 4 the pain began to subside a little and I could weight-bear on my right foot ever so slightly. There was this awful biting pain around my big toe which drove me nuts. It was all-consuming when it was there. Fortunately it only lasted minutes at a time then it was gone for a while. Dr Google told me it was probably the result of a little nerve-ending being nicked during surgery. Facebook friends told me it meant healing was happening. Meals on wheels were weaned and I could tolerate short stints upright. I adjusted to daily sit-down-showers which took a while to set up and pack up but really, what else was there to do anyway while I was incapacitated?

On week 6 the plaster cast came off. By then I could hobble without my crutches and I was looking forward to having a normal foot again.

WRONG.

After the removal of the cast, and all the disgustingness that goes with it, I started noticing really weird things. Apart from my foot being super-weak, the sole of my foot was extremely sensitive to the touch. I couldn’t really touch it on the floor. Back on crutches. My foot was also much much redder, and hotter, and sweatier, and stickier, and the hair was growing thick and black. Had the surgeon played a trick on me and replaced my almost-normal right foot with someone else’s problematic foot? This wasn’t my foot. I wanted my foot back. And quickly.

The weeks passed, but I wasn’t getting the healing I was expecting. I was still limping excessively, which was putting strain on my back and the rest of my body. I couldn’t even tolerate my foot inside the sheets, and was still having to elevate my foot wherever I went. I couldn’t walk far. Grocery shopping online. Any shopping online! It was painful to drive. It was painful to take my child in and out of preschool. It was painful to do anything. I was embarrassed about my limp. I was embarrassed about not being able to wear shoes that matched my outfit. Silly things. But they annoyed me.

Two of our friends used to be physiotherapists. One said one day, “It looks like you’ve got RSD.”

GOOGLED R.S.D.

Big mistake.

My heart sank. Complex Regional Pain Syndrome was the replacement title for RSD (Reflex Sympathetic Dystrophy). Anxiety set in. Brain spinning. Future gone. Or was it?

My follow-up appointment with my surgeon at 12 weeks post-op was an interesting one. I gave him a list of all my symptoms. He examined my sticky, sweaty, hot, weird-coloured foot. He looked concerned. I told him I needed him to write to ACC and lodge a claim. I told him I can’t afford to keep paying $140 per visit if I had a complicated foot, or CRPS or whatever. I told him I needed to go under the public system. I told him that having CRPS was not an option for me. He told me, “If you think you’ve got CRPS, then you’ll have it.” Unhelpful, but I knew what he was saying. “Let’s wait a few more weeks and see how you’re going.” In the meantime here’s the name of a private pain specialist I know. Did he not hear me when I said I have no more money and needed to go through the Public System?

Week 16 follow-up (another $140 later), and I’d had a good couple of weeks. Low pain. Toes could now touch the floor from swelling going down. Still couldn’t fit desired shoes. Still red, hot, sticky, sweaty. He said, “Whatever you’re doing, keep doing it. See me again in a few weeks.”

When I grow up I want to be a $urgeon.

My few good weeks were followed by a couple of bad weeks. Swelling back. Pain back. Limp worse.

Enter my quite-the-high-up-in-the-world-of-medical-academia friend. Our families have been friends for several decades. He was following what progress of my foot and was offering what support and wisdom he could along the way. He was sure I had CRPS too. I asked if he would come with me to my next follow-up with the surgeon. He said sure (which is a BIG deal, as he really is a busy person, so for him to take a couple of hours out of his day was very kind).

At my 19 week post-op, follow-up with my surgeon, Dr Cool stood up with me as the surgeon called me in. It was quite an uncomfortable 15 or 20 minutes (for the surgeon). However, the surgeon finally conceded that yes I did indeed have CRPS (albeit MILD) and he also got the ball rolling with ACC (applying for treatment injury cover), signed me up for PUBLIC pain and physio treatment, and after Dr Cool asked ONE question, Surgeon also agreed to see me in the public system so it wouldn’t cost me anything should I have to see him again. Everyone needs a Dr Cool in the family.

So now, I’m at 24 weeks post-op and I’ve seen a Physiotherapist who specialises in pain syndromes like CRPS. It’s a fascinating disease. I’ve always been a great admirer of the brain anyway, so to be someone who needs to start re-connecting neurones is quite an exciting challenge. So I’m armed with a myriad of brain exercises and a few little foot exercises.

At 24 weeks post-op I have SOME pain still. It comes and goes. It’s really only sore when I walk on it. Sometimes when I’m resting, I’ll get the odd shooting nerve pain that triggers a shudder. My foot HATES the cold. I’m glad I live in Auckland and not in Christchurch. It is really sticky. It picks up fluff from the tiles and carpet. It is still swollen. My toes STILL don’t touch the floor. It gets fiery-hot when it’s hot. It’s like it doesn’t have a working thermostat. It’s red, purple, blue, white, yellow and all the shades in between. The toenails have all but stopped growing and the hair that springs out of the end of my foot is hobbit-like. Tried waxing. Blood everywhere. Fear not! I now shave them. I still can’t walk far. Supermarket trips need to be carefully planned. Holidays are put on hold. Exercise is put on hold. Life still happens but it is limited.

It is frustrating. However, when I look at the blogs and posts of other CRPS sufferers, I am sincerely grateful my situation is not worse. I’m a mild CRPS sufferer. I have a dodgy foot. It will heal one day. I’m okay with that.

She is all around us.

I’ve just read this little thought from Útmutató a Léleknek and I think it’s too clever not to share.


 

In a mother’s womb were two babies. One asked the other: “Do you believe in life after delivery?” The other replied, “Why, of course. There has to be something after delivery. Maybe we are here to prepare ourselves for what we will be later.”
“Nonsense” said the first. “There is no life after delivery. What kind of life would that be?”

The second said, “I don’t know, but there will be more light than here. Maybe we will walk with our legs and eat from our mouths. Maybe we will have other senses that we can’t understand now.”

The first replied, “That is absurd. Walking is impossible. And eating with our mouths? Ridiculous! The umbilical cord supplies nutrition and everything we need. But the umbilical cord is so short. Life after delivery is to be logically excluded.”

The second insisted, “Well I think there is something and maybe it’s different than it is here. Maybe we won’t need this physical cord anymore.”

The first replied, “Nonsense. And moreover if there is life, then why has no one has ever come back from there? Delivery is the end of life, and in the after-delivery there is nothing but darkness and silence and oblivion. It takes us nowhere.”

“Well, I don’t know,” said the second, “but certainly we will meet Mother and she will take care of us.”

The first replied “Mother? You actually believe in Mother? That’s laughable. If Mother exists then where is She now?”

The second said, “She is all around us. We are surrounded by her. We are of Her. It is in Her that we live. Without Her this world would not and could not exist.”

Said the first: “Well I don’t see Her, so it is only logical that She doesn’t exist.”

To which the second replied, “Sometimes, when you’re in silence and you focus and you really listen, you can perceive Her presence, and you can hear Her loving voice, calling down from above.”

~ Útmutató a Léleknek

My Chevron Osteotomy

Three days ago I had bunion surgery. I’m 43 years old and my bunion was causing me some discomfort which was becoming a constant little nag. I have medical insurance so I figured I’d go get the nag dealt with before it starts getting worse, and more unsightly.

Well…

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My nag has turned into a gigantic, booming throb! Now I know this is only temporary, but for anyone out there who is thinking of bunion surgery, think again!

I went into this quite blind in retrospect. I had done research about the surgery itself and what was involved, but not once did I google, “pain after bunion surgery”. Had I done so, I may have reconsidered this altogether – or at least postponed it until my children grown out of the “climbing all over their mother, bouncing on the bed” stage. It seems I’m not the only person on the planet who post-surgery is going, “OMG THIS HURTS LIKE BILIO!”

Surgeon casually announces, “It will be quite sore for a day or two, once the ankle block wears off”.

Quite sore.

Then proceeds to tell me, “Because it’s your right foot, you probably won’t be able to drive for 6 weeks, and may need to wear a special shoe for 3-6 months.”

Special shoe. Whatever!

For now I shall enjoy the sleepy effects of morphine and codeine, which is the only positive to this agony (clearly the pain is THAT bad that even with morphine and codeine it’s still “quite sore”).

If stronger drugs existed, I’d ask for them.

Better still, put me in an induced coma for six weeks and wake me up when it’s over.

Between Two Clouds

Today is November 14, 2012… and Auckland witnessed a solar eclipse of around 85% of the sun being blocked by the moon. Because it’s Springtime here, we have lots of cloud, rain and wind. BUT fortunately, just at the time that the eclipse reached its peak, two rather large rain clouds provided a little gap for our viewing pleasure. So I got my old camera out along with my cheap zoom lens and stood in the cold wind, wearing two pairs of sunglasses, pointing my camera at the disappearing sun, (albeit still burning my retinas) and took this series of photos.

10:30AM. The eclipse was already well on its way by the time I got outside to snap pics…

10:39AM.

10:43AM. This is about as clear as they sky got… still some cloud obscuring the view, but not a bad result considering my shonky equipment.

10:49AM.

10:50AM. This is at the peak of the eclipse.

10:59AM. The clouds are thickening up… but it does make it easier to take the photo.

10:59AM. About to go behind another big black cloud.

Murphy’s Law would have it that as soon as the eclipse was over, the sky turned blue and it started warming up. Typical Auckland weather!

PS: My eyes are still seeing white blotches after that… I wouldn’t recommend it.

Jacinda

Easiest Dessert Ever – The Lemon Posset

I’m so excited about this little treat, and the absolute ease of it, that I just have to write about it. Had a girlfriend come over last night (both our hubbies are away) and she bought the main dish, I made salad and dessert. I was feeling very uninspired all day and towards the afternoon I was racking my brain about what to make for dessert. Then I found this recipe which has only 3 ingredients! Too easy!

LEMON POSSET

300ml cream

1/4 cup caster sugar

1 lemon

(Serves 2)

Image

Lemon Posset

In a saucepan over a moderate heat, bring to the boil cream, sugar and rind of one lemon, stirring. Continue boiling for about 3 minutes. At this stage the cream still hadn’t thickened up very much and I was thinking it would be a disaster. But read on… Take off the heat and add the juice of one lemon, stirring. This is where the cream immediately curdled a little, hence thickening. Pour the mixture through a strainer into a jug to remove the lemon rind and create a super smooth consistency, like hot custard. Pour into individual serving dishes (I used red wine glasses, but if you have martini glasses, these would look amazing).

As a variation, I popped frozen raspberries into the bottom of the glass before I poured in the mixture. It takes 2-3 hours to set in the fridge. Once set, add mint leaves for garnish.

It tasted so decadently lemony and smooth, that I will definitely be making this again, although not too soon as I’m sure this isn’t great for the old waistline.

Try it! Go on, I dare you!

Herbies Go Bananas

Before I start this post, I just need to reiterate that I’m very new at this gardening thing, so before you read and then chastise me in your comments, please just chuckle inwardly, then set me straight with words of encouragement, and expert advice.

MY FIRST HERB GARDEN

Well, it’s not just a herb garden… there are flowers and some vegetables too. A mish-mash. Kind of like my head-space.

When we moved to our new house in Totara Park, the garden was a mess. The landlord admitted he and his wife were no gardeners, so it looked pretty awful. Fortunately, they’d already pulled out a couple of monsters, but on one entire side of the house they had planted rambling Rosemary bushes which were colossal. A few weeks after our shift we (and when I say we, I mean my husband) pulled the wretched things out, just about hospitalizing himself in the process. But we got it done and it looked better bare and barren than it did with woody, scraggly Rosemary. Next problem: clay soil. Urgh! I was still fairly ignorant though so covered up the barren-ness with weed-mat and planted some lovely ground-cover gardenias along one side of the house. Weeks later they had not changed in shape, size or colour. Maybe they are just the slow-growing variety (if that exists). That’s when I started doing some research. The more searching and reading I did, the more I got excited about the idea of gardening. That’s where the herb garden comes in.

This is the gnarly dreadful stuff that my hubby pulled out of the garden.

Digging out the clay soil – a pig of a job.

One section of raised bed was particularly clayish so I (and when I say I, I mean me) began to dig. And dig, and dig and dig. After reaching Germany (okay, slight exaggeration) I threw in all sorts of good composted soil, and pots and home-made trellis. And this is what I ended up with. Ta-dah!

Ready for planting with pea trellis, pots and good soil.

The plan I had in the back of my head was to have an area where I could plant edible herbs, medicinal herbs, some pretty flowers to attract bees, some pretty flowers to deter baddies, and some veges. After a couple of months of propogating (and some buying), it’s looking pretty good, and will by summer, hopefully be pretty amazing.

Looking healthy and happy.

WHAT I’VE PLANTED

There’s a myriad of living things in this raised, sloping garden. Alderman Climbing Peas are growing well up the trellis. Other veggies in there include broccoli, cucumber, zucchini, curly lettuce and garlic. Herbs include staples like parsley, mint, sage, dill, oregano plus interesting things like marjoram, peppermint, lemongrass, pineapple sage. Then medicinal plants like feverfew, hyssop, borage, lavender, yarrow, and chamomile! Almost forgot to mention marigolds, nasturtium and these other flowering things that I don’t know the name of. I daren’t put more in otherwise there will be no room for my pretties to grow.

I love looking at this little patch of transformed dirt. I’ve started on the other side of the section and that’s a work in progress which I’ll blog about when it starts looking like something other than a hunk of dirt – but it’s also going to be amazing!

Basically the idea is to cut down on the grocery bill and boost our family’s fruit and veggie intake. Nothing like a salad made with fresh lettuce, fresh tomatoes and fresh cucumber picked only minutes before! What could be better for you? Bring on summer!!

Oregano

Mint… going mental… good thing it’s “contained”

Borage… edible flowers and superpower medicinal properties (also a good bee plant).

A variety of Roman and German Chamomile to make Chamomile tea. I can’t wait for flowers to appear.

Marjoram

Lavender

Nasturtiums (with edible flowers) are going crazy on one side and flailing on the other. Weird. Perhaps they like being a little more sheltered next to the wall?

Spacemaster Cucumber. I’m hoping there’s enough room here to contain it’s spread. Apparently this variety takes up less room (whatever that means).

Peppermint
Did you know peppermint repels spiders?

I can’t remember the name of these, but they’re beautiful.

Alderman Climbing Peas. 3/4 of the way there. A little higher then hopefully (fingers crossed) we’ll harvest big fat juicy peas!

UPDATE FROM LAST POST

The demise of the tomato was a learning curve indeed. I was ignorant. Now, better informed, I’ve got two well-established tomato plants in big pots which have just started venturing outside to harden off (or harden up as I tell my kids). Yellow flowers even! And little tomato plant seedlings getting stronger and bigger every day. We are in for a free feast!

Over-and-out,
Old & Crusty

The Demise of the Tomato

I started buying seeds a few months ago.

We’d moved into a house next to Totara Park with native trees, native birds and loads of sun, so it only seemed logical to put in a decent garden. Being a stay-at-home-mum and on one income also meant a desire to save money by growing some veges and herbs.

I need to mention, I’m new to this thing called gardening. I know nothing!

Hence came the research. Okay, so companion planting is important, which means certain kinds of flowers needed to be planted as well. More seeds. Then there are medicinal plants (and I’m all for trying natural first when it comes to remedies)… More seeds.

I’ve purchased so many seeds now, and done so much research that my dreams consist of seedlings, watering, digging, weeding and of course, harvesting and eating.

One of the things I was most looking forward to eating this summer was tomatoes (you know, the kinds of tomatoes that actually taste like tomatoes – none of this rubbish you buy from the supermarkets that taste like water). So I patiently waited for winter to be over and done with, then waited a little longer to be sure, then I planted two very yummy sounding tomato seedlings.

The day before the frost

Two weeks later, a cold front swept over New Zealand and delivered a beautiful but unwelcome Spring frost! Tomato plants (let alone seedlings) don’t like frost. The frost was all over every single leaf. By the time I went out to investigate the damage, the plant was already dying.

Frost Bitten

More research: How to save tomato seedlings after a frost? The answer? Not the answer I was looking for.

The dying seedling

However, it seems there might be hope. One blogger left a “dead” tomato plant in the ground and a couple weeks later it started to sprout again. So I’m going to do a wait and see, rather than pull out and start again. I figure it’ll save me a few bucks – and buck-saving is imperative right now.

I’ve got some heirloom tomato seeds arriving any day, so at least I’ll have a back-up plan. Either way, I’m gonna be eating tomato-tasting-tomatoes this summer!

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