Friday, September 26, 2014

Standing at a Crossroads...

Okay moment of complete honesty here. I had such a great time performing in Delaware on Friday, Connecticut on Saturday, going to an 80s party and singing all day on Sunday, and playing in Connecticut again on Monday (and then driving home that night). I wouldn't change a thing. I had a blast.

But I was so wiped out that I slept until 6 PM Tuesday. Yeah- went to bed at 2 AM and slept until 6 PM.

There's no bed like home. Noise machine, perfect mattress, perfect pillow, perfect temperature ... ceiling fan overhead, perfect hubby, perfect sweet doggie curled up next to me.

When I am comfortable, I can easily sleep for 12-16 hours nonstop. I'd rather not. It was a beautiful day today and I pretty much missed it. But I needed to refuel.

I'm always looking at ways to improve my health and reclaim more of my energy- Because there's so much I want to do. I want to write more songs. I want to learn to be a better tap dancer. I want to record CDs ... I want to write books. I want to do a one woman show. I can't do all that stuff if I'm asleep. But I can't stay healthy if I do too much.

Such a quandary and one I've been dealing with since 1992. Doubly frustrating, because before all this happened I was like the energizer bunny- unstoppable.

And frankly, I wouldn't have made it through the weekend without my ADD med (which I take sporadically). I'm supposed to use it to focus, so I can do odious left-brain tasks like bookkeeping and answering email, but I was using it just to have enough energy to get through everything and not fall asleep at the wheel on the way back to the motel (it is a low-grade amphetamine).

This week (Wednesday, 9/24), I'm starting a new supplement and food regimen. I hope that it helps me to reclaim some of my energy and health. I'm happy I'm able to do what I am able to do (largely because we don't have kids, I'm self-employed, and when I need to I can sleep 16 hours). But I really want to be my old self again - full of energy, and sleeping only eight or nine hours and feeling refreshed.

Oh feeling rested and refreshed! That would be great. And I'm going to aim for it and I will keep searching until I find it. Whatever it takes for me to be completely healthy.

Rheumatologists tell us lupus patients that if we use the medications we can lead a "normal life." Well, their idea of a normal life means that we get to live to be 60 or 70 or 75 years old. But it also means will be on medication all the time with horrible side effects (including hair loss, a big moon face and massive weight gain, to name a few)- and we also might die of a brain infection or incurable pneumonia at age 50 because of the medications that are used to suppress the immune system.

Okay, yes, that's a huge improvement over way things were 60 years ago when there was no treatment at all for lupus. Back then, it was a death sentence. You would be dead within five years of diagnosis. But I want quality of life not just quantity.

For 20 years, I have tried every form of alternative medicine you can think of & supplements and diet changes. A lot of it has helped and I've managed to stay off the prednisone quite a bit longer than most people who have lupus - and certainly anyone I've met who has lupus with the severity that I did. I've never been on it for more than 10 months at a time.

My choices for maintenance drugs are:


1) CellCept which can lead to a fatal brain infection and also gives you increased risk of lymphoma (and gives me 100% chance of diarrhea)... 


2) benlysta which as I understand it allows you to take a reduced amount of prednisone. I'm not on prednisone. 


3) plaquenil which mostly helps with skin and joint problems but not kidney problems. And may cause blindness.


4) Prednisone (low dose). Start with high dose to get things under control, then taper to as low a dose as possible, while still keeping disease under control.



I do not like any of these options, to be frank.

I'm stubborn and demanding and I will get my health back. I've had a couple years 95, 96 and 2003 2004 where I really felt great and was medication-free. So I know it's possible. I recently quit my teaching position in Westfield at a guitar store so that I would have more time to devote to my health. Time to dig in. Wish me well! I will keep you updated.


Carla
http://www.thesingingpatient.com
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