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?

Getting Grown-Up

Happy New Year

Every New Years my hubster and I sit out on our balcony after the kids have gone to sleep.  We eat fancy cheeses, oat crackers, pepitoes and plump olives… and my favourite; grilled artichoke hearts.  We toast another year. We talk about how it has been and stubbornly focus on the achievements, congratulating ourselves for what we have managed.  Then we plan the next year together. As the years pass and my body presents more challenges, we’ve been surprised by how much we can still do.  Together.  2014 has been a good year for us as a couple. It’s been good for us as a family.

It’s taken all year, but our minor renovation downstairs is complete. Happy sigh! A good year for finishing things, tying up loose ends.  Getting more organised.  We are starting to feel like grown ups. I turned forty this year; next year, he’ll turn fifty.  Takes a while, getting to this grown-up feeling!  Once upon a time, we used to go to New Year’s Eve parties.  That’s just not feasible anymore, and you know what?  We don’t even miss the sparkle and excitement, the social stress, the late night, the hangover.  Last year we rang in the New Year at 10pm and tucked ourselves up in bed.  It was perfect.

We have a decoration on our tree, it is a hanging, lidded gift box, crammed with tiny notes.  This year, when we were decorating the tree, my son asked me what all the folded pieces of paper inside were. He had never noticed them before.  They are all our plans for all the New Years. Written in tiny script, hopes and goals and aspirations, folded into the smallest possible wad and added to the years before.  I showed him and his interest skipped off elsewhere, the way it does when you are seven and Mum shows you something less magical than you expected. We, however, always look at previous years nostalgically when we add a new one! It’s amazing how many of them have come true.  Is that because we wrote them down? Planned for them?  Is it really that simple?

What are you planning for in 2015?

Next year holds so many unknowns for me.  I am supposed to start IVIG treatment.  That will run for six months. I’ve been accepted into a leadership programme, for people who show promise as a voice for social change.  For me, that means really working on using my voice to promote understanding of invisibile illness and invisible disability in New Zealand, building leadership skills, increasing my network.  It’s an incredibly cool opportunity, but I don’t know yet if the first will preclude me from the latter, I’m waiting for some dates to know for sure. I feel like I am suspending my excitement in case it doesn’t all fall into place.  But, OH!  What if it does?!

What is certain for me about next year is that I will be wife-ing, mothering, writing, and getting involved with life in as many ways as I can.

I’ll be spending a bit of time (as much as I can manage) out in the countryside, where my daughter rides; drinking in the goodness of green paddocks and the sweet smell of horse feed.  I’ll be stroking the warm neck of her wise and good pony and watching my girl follow her bliss, hair flying out behind, grin on her face.  It’s the best soul food on the planet, watching your children do the things they love.

I’ll be wrapping my arms around my little guy as often as I can. I feel that he is moving on up into a new stage and the little boy sweetness of his cuddles is making way for boundless, urgent energy. He’s a big kid now, a purple belt in karate, a story-writing, poison-ball-tramp-champ-justice-leaguer. He’s growing up and I am treasuring the last vestiges of my baby boy.

I’ll be working on some more pro-active health measures.  I want to improve my gut motility somehow, so I am going to work on what I feed it, I’ll be giving my intestines a rest in the very early New Year by starting a liquid diet.  I had a gastrograffin study which showed, when compared with my recent gastric emptying study, that liquid transits through my intestines with much more ease than solid food. So goodbye cake! I’ll be souping it up instead (know any great soup recipes?). I also want to do all that I can for my general mobility and my fitness, so I am going to the rehab centre to work on my exercise program. I’m excited and hopeful about what that might do.

I’ll be here, blogging about my life with dysautonomia, and all the other things besides.  I’ll be connecting with you over on my Chronic-ills of Rach facebook page. I’ll be emailing, advocating, writing and doing the work I have been given to do.  There is so much more of it.   Hang around with me, I’ve just got this feeling that 2015 is going to be a good one!

How do you celebrate New Years?  Can you?  Do you have little rituals too?

Radioactive Pancake

On Friday, I was introduced to a new friend.

It was all part of my Gastric Emptying Study. The radiology department laced a pancake with radioactive isotopes and gave it to me to eat. They wanted to watch how well my body made short shift of my new friend. Considering what it was made of, it didn’t taste too bad, but I wouldn’t exactly have said that I wanted to hang around with it all day.  But regardless of my feelings on the matter,  my new friend decided that we had a special connection.   We were destined to be together, and four days later, here we still are.

Like the visitor who settles in for the duration, Radioactive Pancake wanted to stay close.  It liked me. It certainly liked my stomach. I managed to get it down my throat (without any maple syrup!  just dry old radioactive pancake).  Food, when you are fasting, is food. Hungry Rach is not fussy Rach.  So I swallowed that pancake down like a good girl. I sent it on its way.  But instead of moving on through, waving good bye at my epiglotis and seeing me ’round (sometime later in the bathroom) my new friend settled in for the morning.   It lay back there in my stomach, put it’s feet up and asked for a cuppa. Or five.

The idea of the test is that you swallow the pancake and they take pictures of you while you lie in a tube. Actually, you are not even in the pictures, the machine only captures the radioactive isotopes.  It measures where the pancake is in a series of shots. If your gastric system is working efficiently, after 2 hours, 90% of the pancake should have passed through your stomach.  If it isn’t, you have to stay for longer to get more photos taken.  Time lapse digestion. Or, more accurately, time lapse non-digestion.

I can only conclude that my tummy is a lovely spot to hang if you are a pancake.  That thing did not want to move. After a few hot drink inducements, and a few more hours, it eventually was persuaded to transit into the small intestines.  I finally got to leave the time-lapse-tube and go home.  It had taken a whole day.

Dear Radioactive pancake.  I know you are still in there.  I would like to suggest that perhaps you move to Russia where I believe there are all sorts of radioactive substances, somewhere in the vicinity of Chernobyl, who would happily befriend a pancake like you.  It’s been a ride, getting to know you, but I’ve got other stuff to be getting on with now.  ‘kay?

See ya later radioactive pancake-inator.  Don’t forget the toilet paper.

 

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Move over Marvel

Yesterday was my first day back home after my trip.  I’d been feeling less than super.  My bed and I reacquainted our special friendship and I spent most of the day hanging out there.  I got up around time for school pick up, and just then, the phone rang.  It was a private number, I sighed …I didn’t have time for another one of those telemarketers.  I picked up the phone anyway.
“Hello?”
“Hello, is that Rachel? It’s Richard Steele. Immunologist.” 
Imagine that, said in a Superman voice and you are right there in that moment.

I sat down.
We’ve been waiting to hear more from the two immunologists I went to see a few months ago. I have an appointment coming up soon at the hospital to discuss The Plan. Last appointment, we talked about high dose steroids and IVIG.  IVIG has yet to be approved. He continued, “-has anything happened?” well now, there is a leading question!  My brain travelled instantly down the path usually accompanied by that question.  Why was he asking about my toilet habits? Was I supposed to do something in particular?
“…have you had any bloods or other testing done?”
Ah. Not about poo then.  The whole world is not about poos after all.
“No, not yet”
He apologised for the delay (have you ever had a doctor apologise for delay?!) and said he would send me through some new blood forms forthwith, get me referred for another Tilt Table Test and a Gastric Emptying Study.

I think they’re a bit like superheroes, these Immunologists I am seeing. 
Not in a crazy way, more in a “Woah… those guys are clever” kind of way.  It’s great to have lovely thoughts about doctors.  So often the experiences of Dysautonomia patients with doctors leads to other, less happy thoughts.  So I’m rolling with the loveliness.  If, in the end, they can’t help me, I will always be grateful that they have tried.  It’s all I need; people to try to help.

So those are the things I am looking forward to in the next wee while.  The tests are to establish baselines for comparison.  My last Tilt Table Test was in 2009.  It was a scary event, because it was when we learned that after 9 minutes of standing without the ability to posturally compensate, my heart stopped.  This time, I’ll have my pacemaker on board, but it is hard not to be nervous after the last time!   I’ve never had a gastric emptying study done, but I am interested to see what the findings are there.  Post-prandial bloating is a daily occurrence for me, so some data would be interesting.  The blood forms, I am also intrigued by.  I wonder what tests they have ordered?  Will they be different, or the same as I have had before?
Fascinating.  Scary.  Exciting.

Stay tuned for the next adventures of The Man of Steele (see what I did there?) and his accomplice Rohan The Illuminator.  Here’s a little sketch I did of them.  🙂

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