Right now I’m waiting for some extra pain meds to kick in.  I’m trying to tapper my Prednisone dose down from 25mg a day to 20.   It doesn’t seem to be going well.  After dinner that telltale Autoimmune Pancreatitis pain started up for the first time since I was in the hospital last.  Not good.  I’ve also been running low grade fevers in the afternoons.  I suppose I’ll be putting in a call to my Rheumatologist tomorrow.

I also need to call my Internist for an appointment to check out what seems suspiciously like a sinus infection.

And I have a handful of other medical related calls to make (including some especially dreaded ones to my insurance company).  It’s enough to make me want to go hide under the covers and go back to sleep.

I always tell people that you have to be your own advocate, but it can be downright exhausting under the best of circumstances let alone when you are sick.

But I, like so many others, don’t have anyone else to do it for me.  So I have to be my own advocate.  I have to stay on top of these phone calls and appointments and lab results and new symptoms.  But lately it just wears me down and out.  It’s a lot of stress and a lot of effort.  Mentally and emotionally.  It’s all in the details, and so much is at stake.

It shouldn’t be this way though.  When people are sick they should be able to just focus on getting better and not navigating through medical bureaucracy and red tape.  It scares me to wonder what would happen if I became completely to ill to do it for myself.  Who would advocate for me then?  There are so many people already in that very situation.  I shudder to think what kind of care they are getting.

There must be a better way.

In the meantime, I do what I have to do regardless of the brain fog making it hard to think straight and the fatigue making it hard to keep my eyes open.  Because I’ve learned that even though being a professional patient is a full time job, you don’t ever get to call in sick.

“You are basically out of treatment options at this point.”

My rheumatologist’s words were like a slap in the face.  The realization that I may be at the end of the road isn’t easy to accept.  The Rituxan didn’t work.  My rheumy doesn’t want to try anything else at this time.  Should I just accept that this is how my life is for the foreseeable future?

I’ve been in a wheelchair for just about a year now.  Perhaps it is time to stop thinking of it as a temporary thing and accept it as a permanent part of my life.  Doing so seems reasonable enough under the circumstances, so why do I feel like such a failure?  Is it wrong that part of me wants to stop fighting it all the time and just get on with living as things are?  Does that mean I’ve given up?

But there is a glimmer of hope.  My rheumy has referred me to another rheumy who specializes in my main diagnosis, Sjogren’s Syndrome.  I still am hanging on to the hope that he’ll have another idea for treatment for me, and that this time it will work.  But I’m kind of terrified that I’m just setting myself up for more disappointment.

Lately I’ve been gambling a lot.  No, not at the casino, but with my life.  My life, I’m realizing more and more, is a gamble.  I hope and I wish and I make educated decisions with risk analysis, but in the end I must simply roll the dice and see where they fall.

Recently, I took a big gamble with my health when i decided to try Rituxan for my various autoimmune diseases.  Like going all in on the last round of the night, I decided to take the chance that I might have devastating and even life threatening side effects for the chance to win big – for the chance to have more energy, to walk again, to be without pain, to be healthy again.

I’ve been fighting with my insurance company for months trying to get this extremely expensive treatment.  It’s essentially low dose chemotherapy.  It’s not cheap.  Not to mention dealing with doctor’s office mix ups with requesting the wrong medication.  Then trying to figure out where I was going to get the IV infusion.

So after months of problems, I was surprised to feel so nervous as the day of the infusion actually approached.  I was frankly terrified.  Terrified not only that I would be one of those very rare people who ends up with a horrible life altering side effect but also that I would end up exposed to Latex while there triggering a life threatening allergic reaction.

My mom and my caregiver Sarina both came with me on Wednesday to the infusion.  After considerable delay while they setup a Latex-free room for me to get the infusion, I somehow transferred from my wheelchair to the too high up exam table and tried to make myself comfortable.

The nurse was a pro and got the IV started without a problem despite my needle resistant and scar covered veins.  I brought my laptop with me and hopped onto some unsuspecting person’s unprotected wireless network and chatted with my friends online while the nurse gave me my premedication.

Things were going pretty well until shortly after she started the actual Rituxin.  I started feeling dizzy, sleepy, and was breathing shallowly.  My nails turned blue.  My mom, quick to advocate for me, requested they give me some oxygen.  Luckily that quickly made me feel much better.  My doctor popped his head in to check on me and  told me that I must be one of the lucky 3% who have breathing difficulties with the infusion.  Lucky me indeed.  The rest of the infusion went without incident.  I was worried that the breathing issues would persist after the infusion was over but fortunately a few minutes after the infusion finished my breathing returned to normal.

The next day (Thursday), however, I felt horrible.  I had the worst back pain of my life.  Right up there with double kidney infections.  I wondered if my gamble was going south.  But a quick call to the on call rheumatologist confirmed that I was having a bad reaction to the Rituxan, and he told me to bump up my dose of Prednisone significantly to calm everything down.

With the extra Prednisone and a lot of extra sleep I was feeling a lot better by yesterday.  Well enough that I took another gamble and dragged myself out of bed to see Up.  That was clearly a bad move because I feel awful again today.  But you can’t win every hand, right?

I won’t know for about two more months whether this gamble will pay off or not, and in the meantime I get to do another infusion on July 1st.  But I keep telling myself that as long as I get the big prize in the end, it will all be worth it.  Because most of life is a gamble.  You don’t know how things will turn out in the end.  There are risks to trying this Rituxan, but there are risks to not trying it as well.  So I made a choice when I decided to go ahead with the Rituxan.  I decided to roll the dice and hope that I’d like where they fell because I have my whole life ahead of me and I want it to be something worth risking for.  And well… I guess that’s a risk I decided I’m willing to take.

And with that I’m going to take another nap.

So the medication that was supposed to be helping me was actually hurting my liver.  It also wasn’t doing anything significant to help calm down my autoimmune.  I felt ready to move on to the next line of treatment, but what would my Rheumatologist say?  Would he agree?  Would he disagree?  Would he do the unthinkable and want to just WAIT?!

I had a bad case of “the pre-appointment jitters” over the weekend.  Fear of the unknown comes into play a lot in chronic illness.  I have no clue what my prognosis is.  I don’t know what I’ll be up to doing tomorrow let alone next month.  I don’t know what new symptom will strike next.  But all of this I have learned to accept as part of my illness and part of my life.  But I haven’t gotten over a deep seeded fear that my doctors will leave me high and dry and alone in this struggle.

Its not irrational.  I was left high a dry by all of my doctors (not my current ones) for about 6 years while my disease got worse.  Now I finally have the best team of doctors a novel patient like me could ask for.  But still, when those appointments I book months in advance finally roll around I get those jitters.

Monday, the day of my appointment, didn’t start out well.  The weather seems to know when I have to trek to the city for one of these appointments and conspires to make sure that its one of the rare rainy days we get in sunny Southern California.  My wheelchair had to be disassembled and stuffed into the car during a downpour.  But despite the rain and inevitable traffic, we made it to my appointment early.

And my jitters came to naught.  My doctor agreed that it was time to move on to the next line of treatment.  He had me stop the old medication that was causing my liver problems.  Soon I will be starting IV infusions of the new medication twice a month.  And I have high hopes that it will work.  (Though I have some jitters about that as well.)

The weather seemed to agree that thinks were looking up.  As we drove to my after-appointment reward, seeing Coraline in 3D, I saw another rare sight in SoCal – a rainbow.