March 2017 –Rheumy update – I made it to 5mg

So today was that magic appointment…

”Come back and see me when you reach 5mg” she said.

At the time I gave her the funny eye roll and we laughed.  And then I told her I’d get there.  And I did.

She asked me how things were and I told her.

She examined my joints and this time she said she could feel sponginess.  I took my sandals off and there were clear lines where the straps sat, visible swelling.  The swelling isn’t huge, but it’s there.  She sees it. She feels it.  It’s enough to convince her.

She asked about stiffness, and which joints are worst.  She asked me to life my arms and watched as I tried.  Both my shoulders are screwed. I can’t even tell which is worse anymore.  I’m putting that surgery on hold because I can’t afford it, the Chicklet needs braces.

I can lift my arms above shoulder height, but it takes all my strength and it hurts like a mofo.  It’s only due to a lifetime of gym work and daily range of motion exercises and a truckload of determination that I can reach overhead at all.  She told me to push against her and my arms collapsed.

But my hips are worse.

I told her about my immunologist suggesting Imuran, and that I would like to start it.  Retry it.  I need something to help me through this taper.

She questioned the choice, not being anti treating the arthritis, just wanting to understand my immunologist’s thinking. I told her as best as I understand it, that she isn’t happy with any biologicals, and given mtx causes severe depression and arava is out of the picture due to permanent neuropathy, and sulfa is a mild drug and plaqenil is basically tic tacs on its own…

She said she would call my Immunologist and clarify.  Fair call.

She was actually very encouraging and supportive.  Something clicked with her today.  Maybe she’s starting to ‘get’ me.  I have always felt she cares, sometimes I think she cares too much, is too compassionate a person…she takes failure personally. She explained again that usually by the third biological, she has a patient in remission. And when that doesn’t happen, she starts to wonder why, wonder if there is something else going on.

And then when all my eosinophilic diseases came up, which shouldn’t happen given my prednisone doses, it all got a little weird.  Impossible even.

Exactly what my Immunologist said.

But that’s good because right now I have two highly educated, compassionate lady doctors working on me.  And they pretty much agree.  Most importantly they are talking to eachother.

Rheumy pep talked me into continuing to taper down.  Get off the prednisone.  Then we’ll figure it ALL out.  She said that my immunologist was thinking about an eosinophilic vasculitis, or something like that, and the only way to prove or disprove it is to get off the prednisone.  That prednisone masks everything, but especially eosinophilic diseases.

Then she took my BP.  110/60.

Way low for me.  All stop.

Stop tapering. Hold at 5mg pending further advice.  Stop taking BP lowering meds.

She’s used to taking my BP and getting 140s and 150s over the hundreds.  She asked me about my weight. I’ve lost about 5kgs since I saw her last, three weeks ago.  But I reminded her that at the start of the taper, I gained 8kgs in two weeks.  Now that has reversed, most of that over the last two weeks.

She said the weight loss, the BP, the abdominal pain, the extreme fatigue are all signs are my adrenals are not working and I need to take it easy.  I need to stop tapering and give my adrenals time to kick in.  That they might recover, and we need to give them time to do that. Fine.  She’ll talk to my immunoligist and order a cortisol test, to see how my adrenals are doing.

I didn’t mention to her that I’m going to a conference this weekend.  And I AM going. I’m not missing this.

I don’t get invited to all expenses paid conferences. I don’t get to stay in a nice hotel, hear successful people’s stories, spend a day with them and network with them afterwards.  That stuff doesn’t happen to me.

Except this time it did happen. Something nice and wonderful finally happened to me, and I really want to go.  Janssen have invited me to the HealthEVoices conference, and when I was invited I was excited beyond belief, and super nervous and felt very privileged to even BE invited.   There is a program of exceptional speakers and it’s an opportunity for me to learn, and to pass on what I learn.

Once upon a time I was career chick.  My career mattered to me.

Once upon a time I had a social life.  The last time I even went out to dinner somewhere nicer than the local Chinese (which is still only a twice yearly occurence) was three or four years ago. I don’t even know.  And I was a ring-in. A stand-in. Because someone else couldn’t go.  I wasn’t there because anyone wanted me there, I was there because friends were kind enough to give me the opportunity of a beautiful meal and a night out, and I was so grateful.  But the last time someone invited ME anywhere was…I don’t know.

I want to go.  I want to learn. I want to meet people.  I want to talk to people, I want to hear their stories and I want to write about it, I want to help other people.

The Chicklet will be with me, and I’ll drill her on adrenal insufficiency, and I’ll take extra prednisone with me.  I know what crashing feels like.  Been there. Done that.  If the T-shirt doesn’t exist, I can design it.

I am going.

And now the pain is ramping, cos its after six.  And this afternoon shit hit the fan and I’ve had kindof a crappy day.  Cos you know, no good deed goes unpunished.  A few things have happened over the last few months, and I’m finally changing. It’s sad.  I’ll write about it when I’ve finished dealing with it. Not even close now.  Not ready to talk.

But I need to get away.  And I am going.  I can hold it together for a day and a half.

So I’m double dosing oxy and washing it down with red and I don’t think I have anything on tomorrow, so I’ll sleep as long as I need. And then on Friday I’m getting on a plane.