State of the 'Sprite

[ladysprite]

My husband is home. This is nothing short of wondrous. He flew in around 1:30am Friday night/Saturday morning, which meant that neither of us were good for much of anything complex on Saturday (and that I missed a larp I had been planning to attend), but he is home. I feel like I can finally take a deep breath again - everything felt tight and a little bit wrong while he was away.

The fact that he came home with chocolates and cookbooks as souvenirs is also awesome, but pales in comparison the the joy of just having him here again.

I still have a motorcycle; I still love it. I'm doing my best to read up on maintenance and take care of it properly, and I'm enjoying the hell out of riding it. I'm still not up to highway riding; I don't know if I ever will be. But at this point I'm completely comfortable riding on regular streets both known and unknown. I'm still a little on the slow and timid side, but each time I go out I'm more at ease than I was before, and I'm riding as often as I can. And I need to get a spare helmet - I'm not up to taking passengers quite yet, but I can anticipate a time when I will be.

Pain-wise, things are significantly less good. After all the hoops I jumped through to get my second epidural, it ultimately accomplished absolutely nothing. The first one brought my pain down by about 50% for a few weeks before completely wearing off; this one had no noticeable effect whatsoever. And I'm also concerned about my anesthesiologist's statement at the last appointment that the "plan" was to just continue epidurals 3 times a year for... well, the rest of my life, and that 50% pain reduction for a few weeks was considered a success by his standards.

So now I start agitating for a referral to a neurosurgeon. For the past year I have been in pain every single day. I have had to give up most of my hobbies. I am on nigh-toxic doses of meds, and then on more meds to deal with the side effects of the first meds. At this point I'm in so much pain that about half the time I can't sleep without muscle relaxants, and I wake up in pain every morning. I can't live like this for the next 40 years. My doctor has stated up front that he's not a fan of surgery and doesn't like to refer people for it, preferring instead to encourage them to just learn to live with their pain, but that's not an option for me anymore - and if he won't refer me I'll... figure something out. See if my PCP can refer me to a neurosurgeon instead. I anticipate a lot of hoop-jumping, but it's the only option I have left.

Other than that... it's autumn. Days are shorter, baking weather is drawing nigh, tomato plants have gone into crazy overproduction, and my kittens are adorable. Life proceeds apace....

Comments

[janetmiles.livejournal.com]

I hope the referral to a neurosurgeon goes as smoothly as possible, and that some sort of pain relief is possible for you.

[starcat-jewel.livejournal.com]

My doctor has stated up front that he's not a fan of surgery and doesn't like to refer people for it, preferring instead to encourage them to just learn to live with their pain

Easy for HIM to say! CWAA. You deserve better -- both the relief from pain itself, and also a doctor who is less cavalier about his patients' quality of life.

[evcelt.livejournal.com]

Sounds like the referral is a good idea, and I hope it goes smoothly and well.

::hugs::

[vettecat.livejournal.com]

Yeek. I hope you can find another doctor who is more helpful.

[jdulac.livejournal.com]

You need a new doctor. No modern doctor thinks "just getting used to your pain" is a good idea. Really.

[johnpalmer.livejournal.com]

Well, research the surgery, and find out if the doctor's lack of fandom is due to poor outcomes. And research other possibilities, too, if you can. But it is your life, and your doctors don't have to suffer the way you do.

I once thought if I was a super villain, I would force my doctors to wear leather mittens until they could figure out what's wrong with me, so they too would have something that seems not-too-bad at first, but just never leaves them alone, and that pops up in surprising ways to annoy them, and it doesn't quite leave their life worthless, but completely impacts the quality of that life.

Then I realized that any decent supervillain would just use a bomb, instead, and realized I was a lousy supervillain. And I guess I'm okay with that.

But the real point is, the doctors don't have to live with it, and they don't have to deal with *any* difficulty, really, if they fail to find some way to provide relief. So in the end - and I wish this wasn't true! - you're the one who has to figure out what kinds of treatments you can attempt to find relief.

One thing I will mention: chronic pain support groups *can* help. They don't alleviate the pain, of course, but they help people cope, and that's more important than it might seem. (And sometimes they may have people in them who have done some of the research for you. Always double check, of course.)

[bess.livejournal.com]

This made me realize something -- I teach pain coping... it's usually in the context of childbirth, but I've used the techniques for plenty of other things, and they do help. It won't take away the pain at all, but it can make it easier to cope with it. I'm not sure if it's anything you don't already know, but if you want to get together and give it a try, let me know. If anything I know can help you even a little bit...