The internet is a funny thing. What to share, what to keep to yourself. What news to break to friends over your blog and what deserves a phone call. For me, things that will impact others, like " we're moving" are best done personally but things that only impact me can get a pass if I share like this. How do you decide?
Yesterday was my big day at the pain clinic. It was a lot different than what I expected. Among other things, it wasn't until an hour in that I realized the young guy I was talking too was the PA, not the nurse and so I didn't go out of my way to impress him. Oh well. That was good too. ( I wasn't being classist, just nurses have a job to do and I didn't want to get in his way. Doctors tend to want to hear the whole story, nurses want a note to add to your chart. Plus, when someone comes in and takes your blood pressure...) On a superficial note, I didn't fit in there at all. Everyone seemed so (excuse my frankness here) pathetic. Unwashed hair, empty eyes, no pride in themselves - seriously broken people. The worst part was on the surface they didn't seem to be physically that bad, just really beat down by it. I made the effort to look my best and I'm pretty sure I surprised them when they assessed how bad things really are. I guess Billy Crystal's "it's not how you feel, it's how you look and you look mahvelous" made a big impression on me as a kid :-)
All chit-chat aside, here's the skinny:
* The scroiliitis is not what is causing all the trouble. It is causing a lot of trouble. Also, my old doc was a huge idiot (this is almost a direct quote). According to these guys, they've never seen SI put someone in a wheelchair and I should, "wipe that from my mind" as "it's not going to happen". Since we've been on a countdown for the last five years and each degeneration was met with, "maybe this is it", hearing there is no it was rad.
* My broken tailbone circa '96 is either still broken or has healed really, really bad. Like crazy bad. And it's causing a boatload of hurt to my already diseased spine.
* I have two or three herniated discs in my lower back - you guessed it, near my tailbone and sacrum. Talk a bout a triple threat.
The plan is to start with epidurals. They'll inject lidocaine and steroids into my spine (for the SI) or my coccyx and see how I do. I might do awesome. I'm *super* excited about big needles in my spine. I watched Incredible Hulk and Blonski - who's a real bad ass - screamed in pain. How on earth will I do? Funny aside, PA says to me, "You've had three kids, you know what an epidural feels like." I said, " Nope. Had mine natural as I couldn't bear the thought of putting narcotics in my babies itty-bitty blood streams" He writes something on my chart. Smiles. " I just wrote we don't need to worry about you and pain meds."
If that fails, we're going to discuss a tailbone-ectomy. Who knew you can cut the silly thing off without too much fuss? Back surgery is always a lot of fuss, but you don't need a tailbone. And since mine is a real brat, this might be the direction we take.
So, right now I'm in the 30 day hold portion of the plan. You have to wait 30 days for treatment while drug tests go through and they gather up MRIs and such. Which means in Nicole terms, 30 days of huge agony before they start making me better. At least now I can put big X's on the calendar. I had my MRI done yesterday so now we wait.
Wealthy:
We did the books this morning as it's payday and I nearly fell over to see we have put 61.4% of our income on debt this month. That means we're living on 38.6% - we never managed to make it on 100% of our income before. Yippee. And this month has had a lot of dumb stuff. My first grocery budget ever and on day three we ran out of flour, ketchup, mayonnaise (vegan of course), worchesterchire... all the staples you "never" have to buy. It certainly hasn't been a case of living off of full cupboards and a stocked freezer. We've even had fun! Go figure :-)
Thanks for all your prayers. There is some rough water ahead for me but at least I'm not looking at ending up in a wheelchair anymore. That's pretty awesome.
18 comments:
Stay focused on the 30 day date and I will pray for you every step of the way.
Oh, that sounds like a lot of really good news!
Even though, you know, the options are invasive and intimidating and thirty days away. But still, options. And ones with real possibility of working well, yes?
And not having to worry about the impending threat of a wheelchair anymore - yay!
This is such good news. It sounds like there are some good options to consider and no wheelchair. Yippee!!!
Keep up the positive attitude and the 30 days will fly by. You are in my prayers.
Oh Nicole I hope this means the end is in sight for you. What an ordeal. Thinking of you!
Julie
You've toughed it out this long, you can make it through another 30 days until the next step.
Such great news that the wheelchair is most likely not in your future.
I wonder if you could sue Dr. Asshat for pain, suffering, and malpractice. Oops...my New Jersey just slipped out. :D
I'll keep you in my thoughts.
Wahoo!
Nicole, you are one of the most positive people I've "met" and with all that keeps getting thrown your way, you stand up and fight! Good for you!!
Thrilled to hear there are other options and that wheelchair isn't one of them!! Keep putting up a fight, you will prevail!!
Hugs and prayers! Love ya!!
Nicole, I had no idea about what you live with. I will be pulling for you in hopes you find a better quality of life.
Warmly,
Tracy
Lots of thoughts and prayers and thankfulness that you won't be in a wheelchair.
I am sorry I gripe about my knee pains, because now they don't seem so bad.
I hope that the switch of medical care helps move things in a more positive direction.
We pray for you at dinner time and will continue to do so.
Love,
the (used to be Maki) Hermannys :)
Exciting news about that BAAAAAD tail bone Nicole!
Sounds really helpful and hopeful!
Woo-hoo you!!
WOO HOO! That sounds like a huge pot of beautiful gold at the end of a very ugly rainbow!! I hope the next 30 days go by in the blink of an eye for you and before you know it you'll be feelin' fine!! I'm glad you went to see another doctor....the other one sounds like he got his liscence out of a cracker jack box!!!
On another note: your description of the other people in the waiting room was sad. It brought literal tears to my eyes. How much suffering there is in this world, but how much of it is brought on ourselves? I'm happy that you have such a positive outlook on things. Sorry so long!! LOL
Oh wow Nicole! I'm glad I stopped by your blog today, what an inspiration you are! Keep those spirits up girl! You have my prayers.
P.S. I'm now following your blog, too! :)
It must be so nice to have an action plan! I always felt "waiting it out" was the hardest part of anything. And how wonderful not to have the wheelchair looming over your head...er, under your bottom. ;-)
Very interesting about the tailbonectomy. It makes sense, I guess, since we don't have tails.
Is all this budget goodness from Dave Ramsey? I've been thinking about his program for a while, but always think "we're doing OK." It can't hurt to do better!
Wow! I am so excited for you! How cool that you can put the wheelchair thing out of your mind!
Otherwise, I'm sorry you're still suffering. But believe me - an epidural is usually a total piece of cake. I've only heard a handful of stories where it went wrong - and it's to the tune of "only one half of my body was affected." (Not that I've ever done a study about it or anything!) ;)
I can't believe you did natural 3 times. I wimped out pretty early in the process (not that I believe it's really wimping out) - which was good, since my labor ended up lasting 27 hours. GEEZUM!
Hopefully the tailbone thing will help, too. You should be aware that herniated discs are often blamed for pain, but when you check people WITHOUT pain, they are just as likely to have herniated discs and other "abnormalities." Very interesting. Another thing to note is that back surgery has a very poor track record for reducing back pain - but it might be different for you. I'm not all that well-versed about sacroileitis.
If there are typos here, forgive me. I am crying. Really crying. But they are tears of joy. A prayer realized in NO WHEELCHAIR. I could not bear the thought of your beautiful person being confined in any way. You are a blessing to the world in which you reside and I am so lucky that I know you.
Continued blessings, my friend.
Mary
Yay and double yay!!!! happy dance city. Happy happies. joyce
Well, that's what I get for half-dropping off the internet for a couple of months!
30 days seems like ages from this end, but will seem like no time at all from the other. Fingers crossed and all my best wishes, Nicole. Hang in there.
You have walked a long path with this! I'm so happy to hear you will continue to walk.
Congrats on sticking to your budget. I so need to take a lesson from you on this!
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