Monday, March 15, 2010

The Issue of Expectations

Today was my appointment with the pain clinic. Last time I saw them was in December, I was still having my tail bone removed and I didn't even know about tethered spinal cords and the fun of having them freed. The pain clinic is supposed to be the banner all my care falls under, their role in my life is to coordinate my care - making sure surgeons, physical therapists, pharmacists and whoever else is involved all have one point of contact. In theory it's a great system but today, not so much.

Imagine you have been dating your beau for a couple of years, you've talked about wanting a family together and you are actively planning your future. One night, he asks you to don your best dress, takes you for dinner at a very tony spot and nervously sets a small velvet box before you. You open it and see a beautiful diamond pendant hanging from a thick gold chain.

This is a very nice gift, right? But it wasn't what you were expecting. The expectations made a very thoughtful gift less than and even possibly unappreciated.

I went to my appointment today harboring fantasies of exercise programs, physical therapy, stretches, yoga, therpeutic swim classes... SOMETHING... and I got, rest a few more months, keep your schedule limited, take your meds - and hey, speaking of meds, do you need more?

This irked me beyond belief. I have been fighting each and every day to reduce my dosages; aiming to be free of pain killers entirely. Instead, the best I could do, was ask to have the amount they prescribe reduced.

They act like I'm somehow unappreciative of the progress I've made. Which is funny as I'm the one working as hard as I can to make that progress and they haven't even seen me since last year. It still hurts so bad I cry. My life is still limited at every possible turn. I'll be more appreciative when my life is more. More in ever way.

It doesn't help that my doctor didn't know a thing about TSCS. According to him, he "Googled it" before my appointment. I assured him (pleasantly) that I probably know a lot more about the topic than he does. He agreed and said no one in the building knows much about it. Great. He also said that it's so rare that there is no known trajectory for recovery. I really want some steps to aspire to. This rest and see business is maddening.


Maggi said...

That sounds like the most frustrating thing ever. I hope you'll start to see more and more good results with every passing day!

Kathi said...

So sorry that the physician in charge of your care knows less than you do about your health and prognosis.

Keep positive and you'll continue to exceed their expectations, while meeting some of your own.

Jenna Bayley-Burke said...

I just...don't know what to say. I want to make suggestions - like asking if the neuro surgeon has a therapy/recovery plan or something - but I mean...they just wanted to write you a new script?

Thank goodness you're so intelligent that you can pursue other avenues on your own. I mean, what if you didn't know how to research? How to think through things to try and see what might work? It's...scary really.

Elizabeth said..., you're disappointed because your pain clinic did not propose marriage last night?

*hug* I'm sorry it was a disappointment. And that this recovery has been so challenging, on so many levels, in so many ways. It would have been nice to have felt you had an ally and a path in that.

Carmen said...

How ANNOYING! If he has been given a patient then shouldn't he perhaps get off his backside and LEARN something about their condition? He GOOGLED it? My God how did you refrain from throttling him? Or getting hubby to do it for you?

*hugs* Nicole.

Kristen said...

I can't imagine how frustrated and angry that you must feel, at least I would.
Still praying for you. Thinking of you, hoping that it all comes around. It is such a roller coaster!

as my neighbor says...
in the middle of all this crap, there HAS to be a pony!

MaryEllen said...


batgrl said...

I can sort of imagine the frustration - I had a head injury situation and afterwards the diagnosis was always "we now wait and see." And it turns out that's what you hear a lot - they can't make many predictions just because so much is unknown about a certain area. Makes it wildly frustrating to try and plan for your life and what you'll be able to actually do!

Being patient is SO dang hard in those situations - I'm certainly not good at it!