day 12: sleepathon!

Day 12 turned out to be "recover from day 11 day."

Whenever I see people running 5ks or marathons for lupus I think wow- the only way most lupus patients could participate would be if they changed it to a sleepathon. I'd have been a serious contender today.

Of course I do believe it's possible to get well enough to run a marathon (if I wanted to), but I am not there yet- that's for sure!  But I'm working on it. And some days working on getting healthy means doing less.

I had a strange episode when I was 17 where for 3 days I kept falling asleep. On the couch, even behind the wheel. I was getting a normal night's rest, but I just kept falling asleep. After 3 days, it passed, and it never happened again. I will never know what that was about, but that is how I felt today.

My sophomore year of college, I was constantly falling asleep as well. On the couch in one of the classrooms (I think I slept through someone's entire music theory class on that couch), in the hallway with my books under my head. Sometime during my 2nd semester, my piano teacher asked me "We've been wondering- are you on drugs?" What?! We?!? The whole faculty is sitting around gossiping about me? I was, I'm sure, visibly shocked and offended, and assured him that was not the case. So then he suggested I get some multivitamins.

I had my wisdom teeth extracted right before that fall semester I don't think I've ever recovered from it. I've never been quite the same since. So once I'm feeling stronger, I'm going to look into possibly getting those pockets looked into and maybe filled in (where my wisdom used be). But no oral surgery right now. Right now, building health.

carla

http://www.thesingingpatient.com
http://www.facebook.com/carla

Day 11: detox

Day 11 vlog- a cleanse day.
I am still pain free, as far as my (no longer) chronic shoulder pain.
I did have some of that passing joint stiffness that seems to go with detox.

I find on days with no food, I have to distract myself in order to take my mind off my hunger.
Today I assembled the stand and pedals, etc. and put our new electric piano together! I'm so excited to have a piano in the house, I think I played for 2-3 hours. Maybe that's why my hand are stiff...

Carla
http://www.thesingingpatient.com

Day 10: Tapering Off Drugs Carefully

Day 10! Still on the plan. Still pain-free!
And now, every so carefully, weaning off one of my prescriptions.



Carla

http://www.thesingingpatient.com

Day 9

At times over these last 22 years of dealing with lupus, I've had to choose between my health and my vanity. Even facing death, I've been like " but my hair.. i don't want to lose my hair! And I don't want to gain 50 pounds from the drugs!"

It sounds petty and ridiculous to someone who hasn't been there. But believe me when those are your 2 options- look like hell or die- some of us have to actually ponder the choices before agreeing to looking like poo. Let's see- Death or death warmed over? is that really the best you got?

So that's why all these 22 years I've been looking for those 3rd options in alternative medicine and lifestyle change. And I've had successes. I just tend to forget, after I get off the drugs and get well and get on with my life, to maintain some sort of sustainable regimen (it's regimen, not regime! A regime is a political power- but I digress).

Anyhow I hope this plan continues to keep me pain-free (as it has for 9 straight days!) and is something I can stick with long term. I also deeply hope that it lowers my unacceptably high inflammation and brings my kidneys back to normal.

And here's today's ridiculous song.

Carla
http://www.thesingingpatient.com

Days 8: ADD kinda day, but stayed on the plan

Day 8:

I woke up feeling NOT tired for the first time in a very long time!
Still not in pain, as well!

Had a really long lunch with a new linkedin acquaintance, then sort of scattered my energy in somewhat useless directions. Just very ADD. It's rare to have energy so I'm sad I squandered it.
I didn't even manage to do a vlog, though I had a parody in mind:
A beatles song:
"it's day 8
 and I ate
 just what I'm s'posed to so let's talk of something else besides the things I'm eating..."

If you know the beatles well, you can tell me what the title of the original song is. I can't seem to dredge it from memory.

Memory... I remember when I had a useful memory. Actually, no I don't.
I recently read that congition is impaired when you have lupus (or any active autoimmune disease). My reaction was "uh, DUH, everything's impaired. The body has to use whatever resources is has to keep vital organs running while simultaneously attacking them. It's hard work. Just ask our government about Iraq. Destroy, rebuild, repeat.

One of my favorite things about this plan is that is is kind of a no-brainer. It doesn't matter if I have a crap memory, or ADD, or both. I posted the daily plan on the fridge, and now I just go see what the next snack/ meal/ supplement is and have it.

2 of my 3 meals per day for the first 30 days are shakes. Meaning I just pour some vegan protein powder in my magic bullet blender with water and ice, and that's my meal. No big decision making, no real prep time, and almost no dishes (1 plastic cup- I clean the base right after I finish blending).

I've never been much of a cook, and not even a fan of food. Unless it's junk (chips, candy, soda- none of which are actually food. I call them "anti-foods" because they take more from your body than they give it. So I don't mind not cooking. The 3rd meal could be cooked but for now I'm just making a big salad and putting snoked salmon or something like that on top.

I have to say though, once you wean your taste buds off the overstimulation of too much salt/ sugar/ additives/ artificial sweeteners, simple foods and healthy foods taste better. I'm starting to really enjoy the berry-flavored shakes (made of actual berry powders).

See you next post!

Carla
http://www.thesingingpatient.com