Wednesday, June 9, 2010

Sometimes it's hard to be a patient patient.

This week has been a Communication Fail.

I talked to Dr. K a while back when he told me he would see if he could move my test dates up earlier and that if I hadn't heard back to call the office on Thursday.  Thursday rolled around and no call, so I dialed them up.

I called the office and they didn't know anything about it so they transferred me to the front desk
who didn't know anything about it so transferred me to Dr. K's secretary
who didn't know anything about it so she transferred me to
Dr. K's voicemail where I asked him to call me back.

And each time I'm telling them the story and they each just go, "uh... hold on let me transfer you," and I do it all over again.  Also I told them that Dr. K wanted me to schedule an appointment for after the tests and they told me, no, they would call me later to set that up.

So Dr. K called me back (that day, bless him) and apologized that he had thought his secretary had called me to let me know that he can't move things around--that I have to work with the front desk.  Okay, I can do that.  But now we've lost a week to me sitting around thinking things were getting done.  Ugh.  Also, he told me not to have them call me later and that I should set up an appointment with them after I know the test dates.

I let him know the twitching stopped once I was back down to a 2x a day dose, and that the stiffness had spread to be almost equal on both hands.  He told me that while he couldn't promise 100% that we would have answers after these tests are done, he did say that Reflex Sympathetic Dystrophy would not spread that fast, but that Scleroderma would.

So for my own sanity, I've decided that in my mind that this is what I have.  Right now the prospect of not getting answers after all this, of ending up with a "we don't know"and living with the "well, they don't know yet, waiting for my appointment" is just too damn painful and I can't handle it.  I can handle the prospect of having Scleroderma because that's something I can fight.  I can set my mind to this beast and kick its ass.  That's not something I can do when I don't know where to aim my boot.  My counselor said that this is not an unhealthy method of coping for my situation and that I'm handling it very well and that she's amazed that I'm still so positive.  I know I would not be in this good of shape, mentally, if I was getting through this waiting time going, we don't know, and hell we might never know and then they'll never know how to treat me.  Worst case scenario: they tell me it's not Scleroderma and I go, YAY! because I sure as hell don't want Scleroderma so there would at least be a positive to it.  And if I really do have it, I'm prepared.


So then I call the front desk and they totally don't know what to do with me.  They transfer me over to Dr. K's secretary again and tell me to leave a message and she'll call me back, and if she doesn't I could call later and ask for Betty.  Can do.

I let several days go by keeping my cell with my constantly before I call on Monday and ask for Betty who seems frazzled that I'm calling since she's sure she had called me.   They have moved up my bone scan to the 14th of June since that's the one Dr. K wanted the soonest.  Okay.  Fantastic.  So it's still two days of testing, just not back to back.  Awesome.  

So I call the Radiology department today to ask if there is anything I need to bring or do to prepare for the test since it got moved up and I was unsure I would receive any paperwork they sent out on time.  They don't have orders for my test yet.  Uh-huh.  Okay, so she transfers me to Rheumatology who don't know what to do with me, so they transfer me to the secretary who takes my phone number who says she will look right into it and call me right back.

5 hours later, I call Radiology again to check in.  They don't have my orders yet.  She said she would call up to Rheumatology and take care of it.  That's the last I heard of this matter.

Then I called up scheduling for Rheumatology to get my appointment.  They only date they had available was this Friday (not the best since my last test is in two weeks) or in August.  I'm not sure what the point is of moving my tests up because you don't want whatever is wrong with me to wait that extra two weeks when you're not going to see me for another 2 months.  I briefly explained that my doctor had said that he wanted to see me a week after my tests and had expressed that even that was longer than he wanted, so she said she would email the secretary and that I'd be getting a call.  Sigh.

I do want to point out that every single person I spoke to was polite, courteous, kind, and in some cases very warm with, "Oh, honey, I'll look into that and we'll call you," type things.  And I'm pretty darn sure that my voice was about the same.  I was very careful to try not to sound frustrated when repeating my story for the 4th time.  I feel bad complaining--I don't know their situation and they don't know mine.  I shouldn't expect them to have same urgency I do.  It's not their fault, and hey! maybe if I sound super nice on the phone, they won't pass the buck!  I'm a cute buck, after all.  I just really wish they'd call me when they say they will.  The doctor can do it, you can too!

So now I'm waiting again.  If I don't hear anything about the bone scan, I guess we just go in on Monday and hope for the best.  And look super-cute with a dash of pathetic which M says I am naturally good at.  For now, I'm all worn out worrying about it.


  1. Ugh, I love how they just throw us around like that. We're told one thing and the complete opposite happens. Keep lighting fires under their asses!!!!

  2. I know, right? That's my plan--though I hate to be the bothersome HEY! REMEMBER ME?! patient. Ugh.