“How would you rate your pain on a scale of 1-10?”

I detest this question.  But I get asked it all the time from my doctors.  How can you apply a pain scale to chronic pain?  I don’t even remember what no pain feels like.  So the whole scale seems to shift.  Pain is so relative.  I have gotten used to being in pain all the time.  I’ve gotten used to the constant stomach pain from the Autoimmune Pancreatitis and the debilitating joint pain that keeps in the wheelchair.  Not something you want to get used to.  But it’s amazing how much I can even take my normal level of pain for granted.

The last 3 days I was without my pain medication due to a major pharmacy mess up coupled with a significant insurance snag.  My stomach hurt and my joints seemed to be screaming with pain.  In more pain, I was more drained, more cranky, more emotional.  I couldn’t sleep well.  I’m yawning even now from the last few nights of poor sleep.  But strange thing was, I didn’t let myself realize how much pain I was really in until it was over… after I finally got my pain meds today again.

The sudden relief from pain was dramatic.  It’s amazing what you can live with when you have no choice, but I won’t be taking my “normal” level of pain for granted so quickly again.

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.

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.

And the saga continues with yet ANOTHER ridiculous addition to the mess up list.

I found out today that they were trying to get THE WRONG MEDICATION approved!  I just can’t believe it.  I have one of the best rhematologists in the country and his office is totally incompetent.

Now I have to wait ANOTHER week to find out what my insurance says about this medication.  I just don’t know what to do to make them do their job right.  Besides calling constantly which I am already doing.

It takes all my patience not to let this wear me down.  But I can’t let it.  I have to save my energy for getting better.

Just now my GI doctor called me on his own accord to check in to see how things were going and if I had managed to get the medication approved.  That made me feel better.  It’s an amazing thing as a patient to find a doctor who goes out of his way to advocate for you so you aren’t always stuck doing it yourself when you are sick.  He is one of those gems of a doctor.  Good to know at least one of them is looking out for me and willing to help me smooth this whole mess out.

I guess I just have to learn to take the good with the bad…  because tomorrow I start again.

So I finally found out what’s going on with my Rituxin and the insurance…

I called my doctor’s office again today because again no one called me back after last time.  They finally were able to tell me that after TWO MONTHS of waiting that it wasn’t covered by my primary insurance.  I couldn’t believe it!  I asked about my secondary insurance – Medi-Cal.  Apparently they didn’t even remember I had Medi-Cal, so they were trying to get me patient assistance from other sources.

I got off the phone with them, and, like I said, I REALLY just didn’t believe it wasn’t covered.  So I followed my instincts.  I called my insurance to hear it for myself.  And 30 minutes later I had an answer.  Guess what?  It IS covered!!!  Not under my pharmacy benefits but under my medical benefits since it is a medication you have to get as an outpatient in a hospital.  AND I don’t even necessarily need to get it preapproved!

I am so SO mad.  I was waiting around for two months to get a wrong answer from my doctor’s office.

There is NO REASON that something like this should happen.  And I’m sure I’m not the first one!  It makes me so angry on behalf of all the people who don’t have the knowledge, inclination, or ability to advocate for themselves and take matters into their own hands.

There is NO REASON that sick people should have to jump through such hoops to get the care they desperately need.

There is NO REASON I should have to wait and suffer while my doctor’s office stumbles and fumbles and won’t call me back.

There is no reason and no excuse.

So now I’m waiting again.  Waiting for next Wednesday when the infusion nurse will be in.  She’s supposed to call me back, so we can rectify the situation.  I’m not counting on it.  So I’m waiting for Wednesday so I can call her.  At least now I know what I going on.  I know all too well.  And this novel patient isn’t happy about it.

The waiting game continues and there is no reason for it.