A Little Like Hope

There are patterns that shape you.  Experiences that make you who you are.

Being sick for the last six years has fundamentally shifted my expectations of life. After all this time, I’ve been in a pattern of expecting things to get worse. I expect things to be hard. I expect side-swipes and surprises and I expect to find ways to cope with all that. But I never expect things to get better. Being optimistic about my health is something I have avoided for so long. All the science, all the ways of being that my body has trained me to accept.  All of these things have shaped my thinking. Being positive about the future of my illness always felt like a redundant pastime. A fruitless and futile exercise in wishful thinking.

So instead I have been resolute. I have tackled my illness like a maze. I have tried to be systematic in my research; I have sought the counsel of wiser science brains than my own. I have searched and pushed and applied myself to finding solutions. And that has been a wonderful focus for my mental energies. It’s less of a dare to the universe than positive thinking or pollyanna prayers. It has seemed logical and appropriate.  Define the problem, seek a solution.

And despite my beliefs that only a logical solution could fix my problem, just recently, the problem has been evaporating. Like the puddles leftover from our long, wet winter. The sun is beating down and shrinking the periphery. Rendering hard clay from the mud and quagmire. Setting my feet on solid ground. I’m feeling well. I’m exercising. Last Thursday I did pilates and followed it up with a walk in the country with my girls, Bee and Lulu.  I walked along the road and back again!  If you have been following this blog, you will know how extraordinary that really is. Where before even one of those activities would have put me back in bed for a few days, I have backed it up with more activity.

I walked! With my girls Bee and Lulu. There,

This weekend I’m in town with my hubster.  The last time we did this was a year ago. And it was so very different. I have no cane. Instead of sitting at the table, wondering if I can stay upright in the seat for the duration of dinner, I sat comfortably and talked with him there for three hours!  We enjoyed a six course degustation menu and a conversation that spanned worlds and made us laugh like we used to. We celebrated. Ten years of marriage. Parenthood. And something we’ve been a bit worried about celebrating. We celebrated my wellness. We’ve been so afraid that to acknowledge how well I am doing would tempt fate. So we haven’t. But last night we talked about it. We exhaled. We let ourselves enjoy this beautiful, fragile thing.

Want to know what feeling well is like?

It feels a little like hope.

I walked! With my girls Bee and Lulu. There,(1)

Uncharted Territory

I am so excited to be writing this post!

This morning I had my appointment with the immunologist who is overseeing my steroid infusions.  We went through all of my symptoms; what has improved since the infusion, and what has stayed the same.

I am able to drop one of my medications!

But that was only the start of the good news.  He is pleased that I have had such a positive response to steroids.  He wasn’t expecting it.  He said that if I hadn’t, my options now would be severely limited.  But I have!  And I am starting to really believe that a different outcome might be possible.

Taken as a whole, the last three weeks I’ve felt better than I have in the six years since I first got hit by a nasty virus (let’s call it the ‘thing’).  Even feeling a little better would have been a win.  But I have felt, overall, a lot better. Better even than an improved sense of wellbeing, is that some of my autonomic dysfunction is also better.  Of note, I’ve been less dizzy, I am no longer constantly nauseous, my post-prandial bloating is reduced and I have had better (though not normal) bowel and bladder function.  I can sweat in some places that I couldn’t sweat before. And my fingers, three of which on each hand, didn’t wrinkle in water before steroids, now do.  In addition, the neuropathic pain in my extremities, hip, pelvis and left leg are vastly improved.  We haven’t checked my pacemaker statistics yet to see if things have improved there, but that will happen over the next few weeks.

My specialist explained that this response really puts us in uncharted territory.  A positive response to immune suppressants, means that the ‘thing’ I have has been attacking my autonomic nerve conduction and pain receptors by switching on an immune response in the wrong place. This immune response is suppressed by the steroids.  Because the erroneous immune response is suppressed, my body is functioning more normally.  This may indicate that nerves we previously thought were permanently damaged may, in fact be okay.  Which in laymans terms means I might be able to improve my autonomic nerve conduction and pain with immune modulation.

It means I am a better candidate, on paper, for further treatment.  So the next step is for me to see all of the specialists in my team.  I will go back to the other immunologist, my neurologist, my cardiologist, my urologist and my gastroenterologist.   They will provide their opinion on my function mid-steroid therapy.  If they concur with the immunologist, that this steroid response is good news, there will be more treatment options available to me.  I am so full of gratitude and joy.  I am not sure if I can properly explain.

Instead, I will let the pictures do the talking.  The photo on the left shows me on a typical morning before immune suppressants. The one on the right, I just took, standing in my kitchen after climbing my own stairs;  after my appointment this morning.  I feel good.

Who's That Girl_

Me, that’s who!
The Me I am meant to be!

IMPORTANT:  Every patient is unique.  The causes of Dysautonomia are varied and complex. If you suspect that you have an auto-immune variant of Dysautonomia, please seek the advice of an Immunologist.  Their recommendations for you will be based on your own medical history and individual situation. I do not claim that Pulse Steroid infusions are a cure for Dysautonomias.  It is still early days for us in my six month course of this treatment.  Continued efficacy of this course of treatment is our hope, but as my specialist said, we really don’t know what will happen next.  We are thankful that it opens up further treatment options.  We are particularly hopeful that the 20% chance of remission will be odds that fall in our favour.   And of course, I sincerely hope that if you have been battling with Pandysautonomia in a similar way to me, you will be able to explore what this might mean for you.  I wish you all, at the very least, the same experience I have had so far.

Life is a beautiful thing.  Don’t give up!