Recovering Crapatarian on eating well

I've mentioned this before. I am a recovering Crapatarian.
I grew up hating food, unless it was junk (salt, sugar, fizz).

I've been working on breaking the junk food habit, along with the "foods I'm allergic to" habit for my entire adult life.

I have tried every kind of diet: candida diet, gluten-free, raw foods, calorie counting. Some of them worked, but I never lasted very long on any of them. I have finally found a system that helps me keep my eating clean. And it has had a HUGE impact on my well-being. I didn't want to mention it until I'd actually managed to stick with it. I've been on this plan since last September, and I couldn't be more pleased with it.

I feel great, and I look great (if I do say so myself!). I'm off the pain meds! I'm on zero immune suppressants. And I am in remission. I've had 3 very serious flares (strokes, kidney failure, congestive heart failure, anemia, pleurisy, extreme weight loss- and then of course the extreme prednisone weight gain!), so I hesitate to say I'm "cured." Because frankly, all I have to do is start eating junk food and foods I'm allergic to and I'll get sick again.

I wanted to share some pictures of me last year and this year. I've received so many compliments lately that I had to go back and see for myself what I looked like a year ago. Hair, skin, eyes- not to mention 15 pounds lighter - with no exercise! (I did start exercising after I dropped the weight, because I finally had the energy).

It's possible to kick old habits! It's possible to get better! It's possible to feel great again. I still have a couple things to work out (I take sleep meds and they cause memory problems, and I have ADD- but those are old problems, and I will tackle them next!)... but I feel like I finally have my life back!
Carla
PS If you're interested in the nutrition plan, let me know. E mail me at carlau@comcast.net  !

summer 2014

summer 2015

Day 30! Functional Medicine

30 days at a time, this plan. And this marks the end of my first 30 days!

Recap of what's happened in the last 30 days:

- vastly reduced shoulder discomfort
- 3.5 pounds gone (with no exercise)

- 3 inches off hips!
- stopped caffeine without trying
- better sleep
- impoved energy

-numerous ridiculous songs :)

plan for the next 30 days:

drop another 1-2 inches from hips or waist
start exercising again: experiment! (tap?)
set up dental procedure
write more ridiculous songs

long-term goals:

feel great every day
hit my ideal weight and stabilize there
have the energy to do whatever i decide to do
remain a ridiculous person
write even more ridiculous songs
help anyone who asks

Also, I talk a bit about functional medicine, alternative medicine, looking for the root cause of illness.

http://youtu.be/Vim5OXwW5eM?list=UURC9gl53K4UW7qQVP5bAPjw

See you next time- Carla
http://www.thesingingpatient.com

Day 13: Minor Breakthrough?

I felt good today! I mean, actually good.
I woke up rested.
I got a lot done.
I was in a good mood.
I went for a brisk walk!
Who is this person?!
Let's hope there are more days like this to come!

Meanwhile, someone somewhere could find a reason to write a blues song about this, so here it is (after a bit of rambling of course, and my showing you my giant tub of unfinished song ideas):

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

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

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

Defending the lupus diagnosis

Hi Carla,

I was diagnosed with Lupus 21 years ago. I understood from that rheumatologist that I had tested positive for ANA.  Now I have moved and am seeing a new rheumy.  She ran tests and my ANA was negative, so she now says I don't have lupus.  I had many positive ANA test results over the years. (Unfortunately I tried to get old records and was told they are not available.) Now the doc says I have Sjogren's. I had the lip biopsy done years ago it was negative, although I do have a dry mouth and teary eyes. I don't dispute that I could have Sjogren's but not in place of Lupus! Isn't just possible I am not flaring or do you have a positive ANA at all times?  The new rheumy won't budge on this, even though 2 previous rheumies treated me for lupus!
Any thoughts on this?

Hi -

Thanks for writing in. This sounds very frustrating, and you are not alone. I've been hearing from so many people over the last few years who have practically every symptom of lupus but can't get any doctor to utter the word "lupus." I'm starting to develop a conspiracy theory over this. It frustrates me on behalf of everyone who is told they don't have lupus when just 5 years ago they would have been told they definitely do.

Yes you could absolutely have both Sjogren's *and* lupus. It is very common for people with an autoimmune disease to be diagnosed with 2 or 3 or even more autoimmune diseases. I've been diagnosed with lupus (SLE), Raynaud's, Sjogren's (all 3 are autoimmune) and fibromyalgia. In my case, they call the Sjogren's "seecondary Sjogren's" which either means it was caused by the lupus or is overshadowed by the lupus (IOW the lupus is the bigger problem in my case).

No one has ever denied my having lupus, but I have definitely had to defend it every time I move and get a new set of doctors. Luckily (ha!) for me, when my lupus flares up, I get every symptom in the book and my ANA goes off the charts and my kidneys start to fail. So the same people who first came in and said to me "WHO TOLD YOU YOU HAVE LUPUS?" like I was lying to them- why would I want to lie about having lupus? - those same people then march in after the tests come back and announce to me "You have lupus," as if they discovered it themselves and are some kind of medical genius. So annoying. So, I kinda get it, how frustrating it is.

Now as to the ANA test. That has NEVER been THE "lupus test." You can have negative ANA and have lupus. You can have positive ANA and NOT have lupus. You'll see on this page from the Lupus Foundation of America (great organization by the way, focused on support and education of lupus patients) that "lab tests alone cannot give a definite "yes" or "no" answer." http://www.lupus.org/webmodules/webarticlesnet/templates/new_learndiagnosing.aspx?articleid=2240&zoneid=524

Similarly, the Alliance for Lupus Research (another great organization, focused on lupus research) says that "no single test can be used to diagnose lupus" (http://www.lupusresearch.org/lupus/what-is.html ).

So anyone who is telling you that you MUST have positive ANA to be diagnosed is misinformed or is looking for a reason to deny you the lupus diagnosis. (This is where I start feeling like a conspiracy theorist- why would they want to deny a patient the correct diagnosis? I mean how do you get correct treatment and education if you don't know what you have? Why?

I wrote a blog post on this topic 2 years ago, comparing the 2 diseases (Sjogren's and Lupus) and sharing my conspiracy theories. I just re-read it and it says everything I would say to you if we were sitting across the table chatting (or ranting).  http://lupusandhumor.blogspot.com/2011_09_01_archive.html

It's my most popular blog post, and that makes me sad.

Meanwhile, Know that a lot of the treatment (immune suppressants) overlap so the treatment may not be all that different.

And also know that the alternative medicine that helps with one autoimmune disease will probably also help the other. (Check out this article from Dr Mark Hyman http://www.huffingtonpost.com/dr-mark-hyman/how-to-stop-attacking-you_b_657395.html ).

So, in a way, it doesn't matter a lot which disease you have if the treatment remains the same. In another way it does matter, because having a diagnosis taken away from you kind of feels like all your suffering, in their minds, never happened.

Still, this situation of doctors refusing to diagnose people with a disease they obviously have upsets me very much. I can't see any morally justifiable reason for doing that.

I hope you get the answers and help you need from a doctor who listens to and respects you.

All my best-
Carla


Carla Ulbrich

The Singing Patient: Author, Speaker, Humorous Songwriter and Entertainer

www.thesingingpatient.com
www.facebook.com/TheSingingPatient
www.twitter.com/singingpatient
www.youtube.com/user/carlaulbrich
www.linkedin.com/in/carlaulbrich
http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?"