A Stitch in Time

Some years ago, I had a rather significant operation. I called it the ‘hitch and stitch’. An internal lady parts renovation. One part of that renovation called for my uterus to be stitched up via my pelvic ligaments to my spine. It was a great thing to do, for good reasons, and it worked. But the stitch on the left side seemed to be the cause of debilitating pain through my pelvis and down my left leg and ankle. I’ve been managing it since then; pain, pain meds, the endless juggle of when I can take them and have the relief I so need.

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Waiting for surgery.

When you are taking really strong meds, there are some things that just aren’t right to do, like drive your kids around, or work. You can’t rock up to a teaching or a modelling job with a floaty head because you’ve just taken your oxynorm. So on the days I worked, I just had to deal with the pain. There have been many tears shed or short words delivered to my nearest and dearest when I am back home after a day of smiling through pain.

Pain sucks.

I’ve learnt to adjust things as I go. Thinking all the time “can I take my pills yet? When will they kick in if I take them now? What else do I need my brain for today?” and then, the pill is swallowed and the other-worldly, floaty absence begins. Sometimes, when it kicks in, I cry with relief.

I am still aware of the pain when I take my pills, but I no longer care about it. Unfortunately, I no longer care about most things when I am in that state and finding words is a challenge. I might drift off mid-sentence, or repeat the same thing multiple times.  Writing for this blog doesn’t work when I am under the influence of my pills, or doing the freelance work I used to enjoy so much. So I’ve written less.

Managing pain meds makes me anxious, because I don’t want to give myself an addiction problem. I also hate my kids seeing me like that, tuned out. I often don’t take my meds when perhaps I should for that reason. But what can you do? Life goes on. Mother work doesn’t seem to be outsource-able. Pain just exists and we survive it. Centuries of women have dealt with women’s issues and got through. And if we can’t, we fall in a heap for a while… and if we’re lucky, the troops rally.

I have felt so fortunate to be in remission from Pandysautonomia that I have felt I cannot legitimately complain. I mean, my life, even with pain is so much better than before. So mostly, I have just shut up about it. People don’t generally want to know anyway.

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…suffering isn’t usually something it is socially acceptable to ‘selfie’

The day before yesterday was an important day for me.  I had a surgery to attempt to fix the problem with that stitch. My uro-gynae surgeon is Tim Dawson, one of the worlds finest medical people. He’s so kind. Previously he had done a hysteroscopy and identified the inflammation, and the location, of the rogue stitch so he knew exactly what to do. We are fairly certain this is the culprit. And here it is.

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This little stitch caused me a lot of grief!

My arch enemy, the cause of my pain, the author of all that suffering. It’s so small! But so are the nerves it harassed. Aggravated nerves can pack a wallop of pain when they’ve been bothered for a long time. When the nurse handed that stitch to me in a specimen bottle, I examined it closely: my Evil Nemesis. I thought about how much I hated it, that small but powerful stitch. I felt like you might feel if a scary spider that bit you is trapped in a jar. Like a victor.

Now, we wait. We wait for the bruising and dissolvable stitches from the operation to repair. We wait for the other procedure he did (an intra-uterine ablation) to heal. We wait for a good number of weeks on strong pain relief to see if my brain can cease firing on the same old pain pathways. And then, we’ll know if it worked. I feel hopeful.  I’ve been working with the Pain Team from ADHB and they have been so outstandingly helpful. They made sure that this time, there would be no re-admission to hospital from pain flare. I’m so lucky to have access to that team, they really know their stuff.

Wouldn’t it be great if removing this stitch in time, saves nine!

Here’s to all you ladies, who like me, never seem to have an easy time of the lady-parts-shebang. To all the girls suffering with difficult periods, menopausal madnesses, fertility frustrations and women’s woes. Here’s to you, to us.  We often don’t discuss these things because it is awkward, or embarrassing, or deeply personal. But if you are out there hiding in plain sight, suffering because of your lady business, I send you solidarity. Hang in there sisters!  The other side of menopause shines like a beacon of joy just over the horizon!  Let us sally forth!

And especially, here’s to the ladies who stood by me, offered to help and made me feel okay, to Pru and Tamra, to Flo my ever-wonderful bestie, to Mo and Toni, Noodle, Bunny, Bee, Nettie and Trissy.
Sisters in biology and sisters in soul. I am lucky to have you on my side.

Just look at what we can do even WITH the difficulties of our ‘downstairses’.  Women are incredible!

What would you do?

I’ve been doing that thing patients do.

Waiting.

I’ve been doing it impatiently, because I’m like that. I goes like this. I’ll be going through my day and the thought occurs, as it regularly does:

How can I keep going like this?

Which always leads to the next thought…

Am I doing enough about it?

What would you do_(1)Well, I’ve been fighting for years to find someone who will investigate the cause of my Dysautonomia and consider treatment.  Last year, I found two great immunologists. Which brings me to the waiting part.  It’s like a circle of impotent wishing.  Drives me a bit bonkers, but that is the price you pay for not paying a price when it comes to medical care. We have this free medical system here and I am so grateful for it (because by the time I got around to organising Private Health Insurance, I was already deemed ‘uninsurable’).  If I’d been living somewhere else (like the US), my situation would be dire.

So I’ve been waiting (albeit impatiently!) for the immunologists to get back to me about the possibility of IVIG.  At the end of last year I had the tests they were hoping would offer a compelling base line. But the tests didn’t provide the strong results we hoped for.  It is one of the most incredibly frustrating features of Dysautonomia, that our tests don’t always catch our bodies behaving the way they do.

My tilt table test was ‘unremarkable’. Instead of my trademark drop in blood pressure and a heart rate that drops through the floor, my blood pressure was high.  The entire duration of the test was a painful torture for me, due to the pain in my pelvis and hip when I am weight bearing. I suspect the pain brought my blood pressure up, buoying my system into a false negative TTT.  But you don’t get a ‘do-over’, and even if I could, the pain issues I am having are still being explored, we know it isn’t structural; it is possibly neuropathic.  Another needle in the haystack.  Either way, it’s not going away overnight. By contrast, the gastric emptying study showed “an abnormal pattern of gastric emptying and small bowel transit compatible with (her) known Dysautonomia”.

And I am only guessing… but I think it is clear that more significant results would have made for a different outcome.  Fortunately, and sometimes unfortunately, the medical system functions on objective data. That’s just the nature of the science.

I had a phone call last night from one of the Immunology outpatient doctors at Auckland Hospital. He was a lovely person who was very thorough with all the details.  He outlined the plan for me. I will start a six month course of methylprednisolone pulse infusions in February.  If I respond well to the steroids, this will give us a better indication of whether or not I have an autoimmune aetiology.  That just means that we will try a ‘suck it and see’ approach.  If this treatment works for me, it points towards my problems having an autoimmune cause.  It has been tricky to establish this point because the tests I have had done have not shown auto-antibodies for the usual culprits.  The main one, the Acetylcholine Receptor antibody, is negative.  According to Dr Vernino, 50% of his patients with presentations similar to mine, are sero-negative.  That’s like one in two. The flip of a coin. That’s why I haven’t been able to just sit with a doctor response of ‘it’s not auto-immune’.  I guess I need proof that it is not, just as much as proof that it is, before I can put that theory to bed.

I am also desperately attached to the idea that my problems might be immune mediated.  I prefer this possibility to many, despite the fact that treatment is not without risks.  I prefer it because it actually has a treatment pathway.  That’s a hope-inducing fact. Apart from my pacemaker, I’ve been languishing in the progressive no-mans-land of Dysautonomia, without treatment, for five years.  My symptoms are ‘managed’ (ha!) with a range of medications.  But none of that is addressing the elusive cause.

If something was wrong with you, if it changed your life and had an impact on your family… would you be able to sit back and accept the line; ‘We don’t know the cause/it is too hard to find the cause/ just accept that you have this thing we don’t understand’?  Well, I can’t. I’d rather go through the frustrations and exhaustion of searching for answers than just accept the ‘We don’t know’ line.

And maybe that is a defect in my personality. Or maybe it is a strength.  Either way, it doesn’t feel like a choice to me. I welcome the opportunity to try methylprednisolone.  It is the first proactive thing that has happened for my condition in five years. And if it doesn’t work?  I really don’t know what is next. If anything.

Maybe that is when I have to look at accepting some things. And that makes me want to drop to the floor in a full tanty. So I’m not going to think about that unless I have to.  Is it wrong to search and search for a cause in the hope of arresting the nerve damage?  I’ve already seen the ways this has affected my body.  I don’t need an imagination, or the facts, to see where it is headed.  If I can find something that will halt the slide, I feel like I should throw everything into that search.  Isn’t it what most women would do?  It’s not just about fixing this for me, it is about finding the best way through the maze for me and for all the people in my world.  It’s not self-indulgent to think they need me.  They do.

What would you do?