Fingers Crossed

At last.  I have a new neuro.  Henceforth referred to as The Newro. 
 Of course, I don’t currently need one. An irony not lost on me this morning!

fingers crossed

I am still full of the new-doc-jitters that some of you know all too well from first hand experience. You’re not sure how much info to take with you. You’re not sure if they will like you enough to want to help you. You’re not sure if you will be the tenth in their clinic, or the culmination of a very bad week. You do know they will be time poor, that goes with the territory.  You know they will be very very smart.  And that makes you a little trepidatious, because so few of the very very smart ones have social expertise. You steel yourself to answer all the questions without being extraneous or verbose. You hope that you’ll just be able to converse. Like humans.  You decide your plan is to just turn up and talk about things, because that seems the most sensible thing to do.

In addition to these new-doc-nerves, I feel a strange sense of illegitimacy.  It feels profoundly odd to be heading into The Newro’s rooms when I am feeling so well. I doubt if he has any well patients at all.  But if I don’t take this outpatient appointment with him, introduce myself and explain why I am hoping he’ll take me on, I may find myself sick again and without a neurologist. In our public system,  that will mean a long delay before I am on the neurology outpatient books again. I guess I am insuring myself against possible relapse, getting my ducks a row. I was first recommended this neurologist over a year ago, when we paid to see a private Rheumatologist, so we could rule some things out. He felt I needed a Neurologist who had an interest. And he knew one he thought would be a good fit.  Then six months after that, my neuro-immunologist asked me if I had a neurologist I would like to be referred to. I remembered the name of The Newro and the referral went in. So it’s been a convoluted journey.

I’m secretly hopeful he might have a fresh perspective on things and might be able to shed some light on why I have responded so beautifully to high dose steroids when it doesn’t seem to do the same for all Dysautonomia sufferers.  My immunologist and neuro-immunologist are at a loss about that. And I wonder if he has some theories about cause, and some ideas of what we should do if it all comes crashing down again.

I’ll write some more after the appointment. Right now, I’m off to my girl’s school assembly.  She’s in line for a certificate and I want to wave at her and see that shining face grinning back.  I’ll be walking to school, up the hill. I won’t take half an hour to do it, like I used to, with sitting stops staged along the way. I won’t need time to gather myself before the other parents arrive. I’ll leave with five minutes to spare, plonk myself down beside one of the mums I know, smile and chat and be the ‘normal’ person I am becoming. After that, it will be straight out to do chores before picking up the hubster on the way to the hospital. Me at the wheel. (Did I tell you I have new wheels?  So exciting! Even more so because we didn’t have to buy something mobility compatible.  We just bought a used car straight off the lot. It was lovely). So many things in one day. I remember how doing one thing in one day was sometimes too much. I’ve come a long way.

I will try to be mindful, today especially, of how it was before. I want the Newro to understand how vastly different things are to how they were. I want him to offer to help me if I start to slide back there. I hope it will go okay. Fingers crossed.

 

The Smear Campaign

smearcampaignWhen I embarked on my six month steroid treatment, I was told by numerous people in the medical profession that I couldn’t safely stay on them any longer than that.  As it became clear that the infusions were making a massive difference in my quality of life, I began to wonder why we couldn’t just stay with them.
They’re working!  So why not?”   I asked.  I would be a given serious look and a statement like “No, no, not a good idea long term”.  I was told that they effect bone density, among other things, and of course, you don’t want to have the bones of an eighty year old when you are forty, not if you can avoid it!  In addition, steroids are an immuno-suppressant, which is why they are working for me. One of the things my immune system does is erroneously attack my autonomic nerves.  It’s why I am sick. So suppressing my immunity reduces that misguided malfunction, making me feel better.  It’s just another convoluted body conundrum, my immune system is making me sick… but I still need it.

See, suppressing the immune system isn’t selective. The medication can’t specifically target the part of my immune system that isn’t working properly, it suppresses all of it. And that means that all the work my immune system usually does, battling infections and reducing the impact of other threats to the body, is compromised. I noticed it first in the little things. Small cuts and abrasions that took longer to heal and got infected easily. Eye infections, UTIs, coughs, colds and sore throats that took ages to clear. And then, a phone call from my GP.  Remember I had a smear recently? She said that the results, in combination with my steroid treatment, meant I needed a colposcopy.  So she referred me to the hospital.  I called them after I got my letter, asking if they had a date. The receptionist said that my appointment hadn’t been triaged yet, but based on the wait list I’d be seen next month. Then last week I had a phone call asking if I could come in the next morning.

A colposcopy is the next step after an iffy smear test.  It is a scope used to examine the surface of the cervix to better see the changes noted in the cells at the transformation zone, where the squamous and glandular cells meet.  The doctor uses a combination of acetic acid and iodine to observe changes that are indicative of a problem.  This screening service is so crucial, because it is an early intervention.

anatomical diagram of the colposcopy procedure
Source: www.pixgood.com

I had high grade changes in my smear results (possibly why my GP said, this). The colposcopy doctor found visual evidence of a bloom of pre-cancerous cells and biopsied the tissue for confirmation. She explained that around 80% of women contract a virus called the HPV (Human Papilloma Virus) back when they become sexually active (those stats are the reason behind the vaccination they’re giving all those teenagers).  Normally, the immune system is very efficient at handling the longer term cervical cancer risk posed by this virus. But when your immunity is suppressed, well, it’s much easier for nasty cells to proliferate.

Thankfully, there is an easy fix.

Usually it is a day-stay surgery with a local anaesthetic, a diathermy knife and a deft doctor.  It’s called the LLETZ Procedure (Large Loop Excision of the Transformational Zone) .  My doctor explained that, for me, it will have to be under a general anaesthetic.  That’s because although the previous gynaecological surgery I had was successful (the top and bottom walls of my vagina have held) the side walls have now prolapsed. It’s a bit more of a challenge for the surgeon so they’ll need me to be ‘out’.

So I guess, for me, the presence of those nasty cells was a loud and clear example of exactly why I can’t stay on those steroids.  I get it! And I am so glad that we have a screening service that finds these things before they pose a serious risk to the patient. Only 1:100 patients who present like I have will go on to develop cancer needing further treatment, so I feel safe and in good hands.
And lucky!

In New Zealand our cervical screening programme is free.  All women should be having pap smears at regular intervals.

I know there are a lot of reasons not to do it.  Having pap smears is not nice.  It can hurt and for some women it can be painfully embarrassing. For others it is a difficult reminder of bad past experiences in that region and can trigger traumatic responses.

Please find a way, somehow,  to have your regular smear.
It’s five minutes of unpleasantness that might save your life.

Have you had yours?

Hundreds and Thousands

1521719_10153162285630815_8428987546632118258_nHello.  I’ve been having the sort of family weekend I have been dreaming of for a long time.

A normal kind of weekend.

Let’s see… a bit of shed building, a trip to the airport to pick up Ceci, supermarket shopping, baking, a few loads of washing, movie night, a short family bike ride. A bit of blogging.

Did I mention baking?!  I just banged out a double batch of our family’s favourite chocolate cake!  Then I wrapped the individual portions and popped them in the freezer for lunchbox treats! And yes!  That is worth all those exclamation marks! It feels… so good.  I’ve had this enormous well of frustration over the all the mummy tasks I haven’t been able to do; it’s been getting deeper and deeper over the years.  Sometimes I have let myself wallow in it and feel very, very miserable about it. But today I was able to drop the bucket in and start ladelling out some of the overflow, because today, I did a whole mummy task!  It feels like a real achievement, kind of a yardstick of how much better I am feeling.

And as an added bonus, I have a blogging friend who runs a regular instagram baking event.  She calls it #sundaybakingsunday.  I’ve wanted to join the sunday bakers since I first found out about it, but by the time Sundays rolled around, I was always too unwell.  So this Sunday, I baked, and I instagrammed it! I’m not much of an instagrammer, so that felt like a double win. Thanks to having the ‘roids on my side!  Rach on ‘roids is such a different creature to get used to.

She contains all of the latent wishes of the Chronic-ills Rach.  She carries all the internal lists and hopes and pressures. She is determined to use all this Steroidal benefit to good use.  She’s on a mission! But if she is honest, she’s overdoing it a bit.  Probably a lot. She’s been racing around like a crazy thing, trying to ‘catch up’. And so she crashes.  And it’s true, she recovers much faster than she ever did before.  But she’s feeling a bit stressy.  A little overwhelmed.  Probably a lot like the average Mum.

Before Kellie passed away, she and I were talking about how it was going to be when she got better. She said she was afraid she would take wellness for granted. She didn’t want forget the lessons she had learned while she was sick and go back to the busy-ness of life pre-sick.  She wanted to remember what was important. We promised each other that we would keep each other on track.  And I have been thinking about that conversation.

I seriously doubted I would ever feel like this again, you know? Able!  So I wasn’t prepared when it happened. But I am feeling more able, and it is a carnival of possibilities!  I don’t know how long these good effects will last, or if this treatment regime will eventually lose against the ‘thing’ that is attacking my autonomic nervous system. So I am conscious that this time I have on the other side; this feeling-good-ability, is so very, very precious. I don’t want to waste it. So why do I find myself heaping on the pressure? Diving into stressville? Why must I cram so much into each day?  I’m like a starving creature in the face of a feast.  I’m so afraid someone is going to take it all away.

The hubster and I had a chat about that today.  About taking it easy, slowing down.  That maybe I need to “Settle, petal”.  So I am here, on my bed, in my ‘corner office’  …taking some time out to write this little update.  I hope you are having a good weekend too.  I hope there is enough of the relaxation to balance out the tasks.  I hope there’s a little bit of mooching in there somewhere. I hope you are getting the balance right.  I hope we are all remembering what is important.

Regular life has become pretty busy since I was last here!  Slow down you lot!  And you, too, Rach on ‘roids.   🙂  You don’t actually have to do hundreds of thousands of things just because you CAN.

Do you feel overwhelmed by the pace of normal life too?
Are we all just a little bit crazy with all the things we try to get done?
Why do we do that?

Out of the Woods?

Screen Shot 2015-02-03 at 10.48.21 am

I’ve been listening to my daughter’s Christmas CD in the car this summer.  I like it when the kids like music that I like too.  It doesn’t always happen! My son is into The Scat Man, and although the sentiments are lovely (think bad rap: I wanna be a human being/ not a human doing/ I couldn’t keep that pace up if I tried/  But if part of your solution/ isn’t ending the pollution/ then I don’t wanna hear your story told…) the relentless scatting and boppy beats drive me crazy.  So, given the alternative, my favourite track on Bee’s CD is a song called Out of the Woods.  It’s here:

Taylor Swift: Out of the Woods
(this was filmed right here in New Zealand, I like that)

I love this track so much.  It makes me think of the things that are going on in our micro world at the moment.  My early fantastic flurry of a response to steroids, my more recent dip back into some of my less fabulous symptoms.  It’s a rollercoaster hope ride. We’ll see the immunologist again tomorrow.  In 24 hours I will know if he thinks my response is a good indicator for a next step. And I’m rolling down the track, thinking “are we out of the woods yet?  Are we in the clear?”

It’s a catchy set of lyrics, I like the repetitive mantra.  But what makes the song really something is that beautiful line somewhere in the middle.  The writer and her partner are in the hospital, after a frightening experience, they’ve been in the metaphorical woods, when:
“the monsters turned out to be just trees…
and when the sun came up
you were looking at me”

I like that because it makes me think about my man. The road has been treacherous and difficult.  There are scary things around every corner. But when the sun comes up, he’ll still be looking at me.  🙂
Thanks BobbyD.  I’m glad to be navigating these woods with you.

 

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?

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.  🙂

10455837_10152876533295815_1543339797563551686_n

Treat Me

Last year on the 24th October, I wrote a post for the Living with Bob blog.  Michelle hosted guest posts on her site to mark awareness month for Dysautonomia. It was the first post I wrote about my frustrations with a doctor. I usually get along great with doctors, but occasionally their pre-conceptions get in the way.  Sometimes it is their egos or their ignorance in the way.  This afternoon I saw a very clever and very personable immunologist who specialises in neuro-immunology.  I didn’t even know we had such a rare-feathered-fella in New Zealand.  But we do!

He took such a long history from me that I had to ask if I could lie my head down on his desk!  A few years ago I would have been too embarrassed to ask if I could do that.  But I’m a bit more vocal these days.  He was a very good doctor.  And he even unlaced one of my converse high tops and pulled it off my foot when I needed to get up on the table to be examined(!)  Far out.  Didn’t know that was included in the service!  One bloke on each foot, taking off my shoesies!

The news is that he wants to try me on a six month course of immune modulation therapy.   He is just getting all the paperwork in order and discussing it with his colleague.  He’ll get back to me.  I had to double check with my hubster as we left that he really did say that.  Yep, he really did.  I was amazed too, at the beginning of the consult, when he asked me why I was there, I explained that I have a list of possible causes and I can’t rest until I know I have checked them all out.  He thought that was “fair enough”. It amazes me that some doctors understand why we continue to search for answers and others don’t at all.  Then he went through a paper with me from one of the world’s best Autonomic Neurologists.  Steve Vernino.  He knew who Dr Vernino was (that’s a first)!

I think when I wrote a few weeks ago: ‘catch me I’m falling’… I got sent a few doctors to do just that.  I am so grateful.  For me, but also for others with Dysautonomia in New Zealand. If this story has a positive ending, it will raise awareness amongst the medical community and make a difference for how patients are treated here.

This is my piece from last year:

Sweet Thing

source: worldsweetshop.blogspot.com
source: worldsweetshop.blogspot.com
 

In the past couple of years, my care has been transferred from my Cardiologist, to the General Medicine department of our local hospital.  My General Physician is a specialist doctor who coordinates the other specialists who care for me and they all consult with him as the primary doctor who oversees my case.  In addition to the General Physican, I have seen a Neurologist, a Neural-Opthalmologist, a Gastroenterologist, a Cardiologist and a Urologist. They all see me through their out-patient clinics unless I happen to be admitted for something. I really like this model.

Until recently, my Main Doc was a really lovely, really clever, experienced physician who was involved, interested and not afraid to admit that he needed to find out more. He wasn’t threatened by me, or my lists, my folders or my frequent email attachments.  He wasn’t even threatened by my six foot frame and it’s wobbly instability.  He understood that I wasn’t trying to be an annoying patient.  I was just trying not to be a patient at all. He suspected that I have AAG.  Autoimmune Autonomic Ganglionopathy.   The idea is that the immune system has turned against the Autonomic Nervous System in error.  It begins to pick off autonomic ganglia, preventing the usual messages from getting through, throwing out homeostasis. And this thinking meant that he was open to the idea of my problems being treatable.  That concept, for me, for anyone facing a progressive illness, is the equivalent of being a kid in a candy store. Treat me!  It’s the nirvana of chronic illness. The delectable hope! Shiny, sweet gorgeousness!

But oh! There I was in the candy store, staring up at the jars, salivating. And it occurred to me that I couldn’t just buy what could make my dreams come true.  I didn’t have any currency. The benevolent gentleperson with all the buying power was about to leave the store.  And he did.  The hospital moved him into another department and transferred my care to a new General Physician. One who hadn’t gone through the lengthy discussions with me about the candy and the possibility that maybe, I’m worthy of having a bag of bulls-eyes (immune modulation therapy). My new Main Man prefers the sit-and-wait approach. Main-Squeeze and I at first, politely inferred; then, referred directly to the last doctor’s findings, suggested and finally pleaded for some more action, some attempt or nod towards trying.  He just took off his glasses, said we need to face some realities. Sat back and said that he would like to simply ‘watch’ my progression. Candy shop shut.

The research in this area shows that if indeed I have AAG, the nerve damage that continues to occur over time is unlikely to be able to be reversed.  So I don’t want to wait while he observes more progression.  I want to arrest the progression.  I need to, in point of fact.  Because, like all of my fellow sufferers, I have a life that I need to get back to. A husband who wants a partner in every sense of the word.  Children who need their Mum in ways and at times that I can’t always be there for them.  And a host of other brilliant things that are out of my reach with things the way they are.  Things that would have been, if I hadn’t got sick.  I’ve got some potential to fulfill.  And although the new Main Man doesn’t know it, I am worthy of the attempt.  Aren’t we all?  There aren’t very many of us.  It’s not like there’s going to be a mob looting that candy shop.  And we are very polite, on the whole.  Except for inside our imaginations, where occasionally, we slap people who don’t want to try to help.

I don’t have the antibodies which prove AAG.  In fact, 50% of AAG sufferers don’t.  But there is still a good chance that I would respond to immune modulation therapy.  So, I am standing in the candy store, alone.  Looking up at that candy.  Just wishing that this new doctor would come striding in and say “A bag of bulls-eyes for the little lady. Quick, now, don’t delay!  She needs them!” And maybe, you know, it could happen; he could treat me.

——————————————————————————————————

P.S The doctor who is helping me, knows about me because I kept pushing to see someone.  He’s the one who strode into that candy store on a wave of good connections.  Somebody knew somebody who might be able to help.  He rode in like a gunslinger from the wild west, a justice rider. And I can’t help but think, if I had left the store, or tired of asking for help, I would be back where I was, making no progress and suffering my slow decline. But I didn’t stop asking.  I didn’t stop pestering.

Is there someone you need to ask about something?  Don’t give up, don’t settle.  Maybe you were supposed to read this today.  It is exhausting keeping up the fight.  But life is too beautiful not to try.