Single Awareness Day (also known as Valentine’s Day) is upon us!  Relationships (or the lack there of) are on the mind.  Relationships are hard.  Romantic relationships are harder.  Even for healthy people.  Having a chronic illness makes it that much more complicated.  It’s hard not to feel undesirable… broken.  I know the “right guy” will love me anyway.  I know the “right guy” won’t care that I’m 150 pounds overweight from being on Prednisone.  I know the “right guy” won’t mind carting my wheelchair or walker around on dates.  I know the “right guy” will love me for the walking pharmacy, allergy ridden, health disaster that I am.  And I have faith that the “right guy” is out there somewhere.  But until then I’ve written this song in honor of today…

Other Girls
by Lauren Soffer

Maybe now I’m just jaded
Maybe my hope has just faded
So I just swallow my pride
Always a bridesmaid never a bride
Never get roses never get pearls
Love songs are for other girls

No one to hold my hand
No matching footprints in the sand
No dinners in candlelight
No little love notes to write
Never get roses never get pearls
Love songs are for other girls

No chocolate candy hearts
No Romeo to play the part
No one to give me a good night kiss
No one to love and cherish hold and miss
Never get roses never get pearls
Love songs are for other girls

But don’t you get me wrong
Trade anything to sing a different song

Maybe now I’m just jaded
Maybe my hope has just faded
So I just swallow my pride
Always a bridesmaid never a bride
Never get roses never get pearls
Love songs are for other girls

Never get roses never get pearls
Love songs are for other girls

“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.

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.