Saturday, May 7th

Gmas rose bush is blooming. She would have loved these blooms.

Joe went to OC.
PS 4/11 Good morning. Feel positive and energetic

Boiled egg, coffeechicorymilk

Called M. Meeting her in Kensignton for brunch. M says I look good. I feel good. I decide to splurge.

11am waffle butter syrup coffee milk

We peruse the neighborhood for shelves and find some Little Debbie snack wire shelves that I love for 7$. I hit the Container Store on the way home for a few paper boxes.

Little Debbie Snacks display shelves AKA my new office shelves.

2pm pure bar, white tea

I’m feeling good and having so much fun cleaning the shelves and sorting paperwork, I don’t think about making sure I eat and drink enough. I did too much.

8pm I suddenly and completely feel worn out.
Fish and chips, water

My body aches. My head feels blurry. I know I didn’t take care of myself and this is the result. I wait for Joe to come home from OC then go to bed.

PS 8/10

Health Log 5/6/11

Friday, May 6th, 2011

Bad night. Kept waking up with aching sides and arms. Very hard to get back to sleep.
Pain Score 7/10

7:30am 40 min with heating pad, PS 5/10

2 boiled eggs, chicory/coffee drink, splash milk

10am Pure bar, water


1:30pm KIND nutbar, green apple, beef jerky, water

There isn’t much to eat at the condo since we spend so much time at Grama’s still, which leads to hunger storm complete with nausea and headache.

4pm Cheese burger, white tea with POM juice

__I waited too long to finish this and I have no idea how the rest of this day went. Boo.

Health Log 5/5/11

Pain Score 7/10 – lower back, sides, upper arms

8:30am 2 boiled eggs, piece br rice toast w/butter, coffee/chicory combo, slash milk

10:30 Pure bar, banana, water

12:30 baked salmon, asparagus, br rice, water, strawberries, decaf coffee

3:30pm Yoga with J. IT IS THE BEST YOGA EVARR. Yes, I will keep going to this studio and work with her. Phew. I was getting worried I wouldn’t find a yoga place where I would feel connected.

PS 3/10 YAY!

4:30pm Pure bar, water

6pm 4oz Chicken breast, small red potatoes, slices sweet potato, water, Guinness

8pm palmful raw cashews, chicory w/splash milk

PS 4/10

Health Log 5/4/11

Wednesday, 5/4/2011

Trunk of my body feels heavy like lead and pain and sore. 20 minutes with the heating pad and I start to feel better. Joe makes me breakfast.
Pain Score 8/10 then 6/10

7:30am 2 eggs, br rice toast w/ butter, 1/3 coffee 2/3 chicory drink with milk

Convo with Homeopath B. She recommends an antiinflammatory and increasing supplement doses that I am already on. We agree thusly –

–The Blood Type Diet “O”, Live Cell – 1 X breakfast, lunch
–The Blood Type Diet “O”, Polyvite 1 X breakfast, lunch
–Dr. Clark Store, Allied Amino Acids 1 X breakfast, lunch
–Nordic Naturals, Balanced Omega Combination 2 X breakfast, lunch
Genoma Nutritionals Scienca 1 X breakfast, lunch, dinner

Went with M to drug store and found 2 sunscreen lotions to try. I’m having a hard time getting on with smells right now. Hopefully Avalon Organics VitaminC Moisture Plus Lotion w/SPF 15 and/or Neutrogena pure&free liquid daily sunblock w/SPF 50 will work.

10am Pure bar, decaf coffee, water

11:30am Half a crab, spinach and cheese omelet, 4 bites potatoes, 2 mini slices walnut raisin bread at Cody’s.


Walk along beach, too much sun. I tell M I want to be prepared for times like this. We head to Lestats to talk it over. My legs hurt and my face is sad burny.

2:30pm Yogurt parfait with blueberries, herbal iced tea, water
PS 6/10

We head to the store where I find –

– my left arm/shoulder invariably hurt then ache at night due to a purse strap. When I sling it over my head and across my body, it hurts my neck. The backpack purse will allow the weight to be even across both shoulders and back.

Hat – The hat I have is very large to cover my shoulders. It doesn’t fit well in a bag, hence my always leaving it at home, leaving my head and shoulders uncovered. The pain I’m feeling on my face and shoulders RIGHT NOW while I type this is exactly what I want to avoid. This new hat has a smaller brim and rolls up without ruining the shape. It’s the first item in my new purse.

Scarf – M tells me she has two thin scarves she brings along to Costa Rica that are thin enough to not be hot and she uses them to cover her shoulders, arms or whatever. I find a white one that is thin and ultra soft. It also goes in my new purse, along with my sunscreen lotions and herbal tea pouches and Pure bars.

We also hit the Buddhist bookstore where I get an intro pamphlet on opening my chakras. I’m really struggling with accepting the reality of my life right now and keep making jokes about how I’m so “special.” But I’m feeling just a tiny bit more prepared to handle my life and that feels good.

4pm Green apple slices and lactose free yogurt cheese, swigs of Kefir and water

6:30pm Veggie soup from the other day with slices of roast beef, water

8pm Guinness
PS 4/10

Health Log 5/3/11

Tuesday May 3rd

Slept solid from midnight to 5am. Got out of bed at 7:30am. Used heating pad on lower back. Pain in lower back, headache, upper arms. Head filled with mucus. Maybe pollen allergies?
Pain Score 5/10

8am 2 eggs, 1 toast w/butter, 1/3 coffee 2/3 chicory, splash milk

10am banana, KIND nut bar

Ladyparts doc appointment

Head to Gyno appointment. Show up at check in time, 12 noon.

12:45 Still waiting. Getting hungry headache and nausea. Pure bar

1:15pm Finally see doc. Commence pain sequence where 3 different speculum instruments are used in a mining expedition with little success of seeing my cervix due to inflammation. To her credit, the gyno did say “I’m so sorry.” and “Relax!” over and over.

Because I mentioned I was unsure about when I would get my next mammogram because of the PAIN, she says she’ll just give me a very thorough breast exam. Which she does and although Act 2, Breastacular Mash 2011, is pretty spectacular, it doesn’t come close to the continuing pain from Act 1.

2:30pm I’m missing my acupuncture appointment. And I’m in major pain and hungry and sick to my stomach. I try to still make my appointment and eat two Pure bars on the way. I drink 4 tiny cups of water when I get there.

I discuss with my acupuncturist my decision to not take Flexiril or Plaquenil. She says she is happy to support my choice. I expected no less. I tell her about my massive headache but strangely, I don’t want to mention that I just came from the gyno and that I’m in massive pain in that area. Subsequently, I didn’t get any relief from that pain and I had her remove the needle in my forehead (for my headache) because I couldn’t relax with it in there. After my appointment, I realize I got nothing from it and it’s my own fault.

4:45 I am drained of all that is good and holy and I know if I go home I won’t eat and tomorrow will be shot before it begins. I stop for an early dinner. Side salad, trout, cooked spinach w/garlic, mini slice of sourdough bread w/butter, 2 bites mac n cheese for dessert at Kings Fish House

I beat Joe home from work and sit in the dark in the easy chair with the heating pad.

6pm Major headache, glass of water, ibuprofen 800mg

8:30pm I am mentally and emotionally overcome. Normally, because of my abusive childhood and teen years, a pap smear or any type of exam in my lady parts is hard to deal with and takes some time to get over, but this has been the worst internal exam I’ve ever had (I will see red/orange/pink thin mucus in my underwear until Wednesday night.), and I’m including the time the doc stripped my membranes during labor with my son and didn’t warn me first. I go to bed early. Joe tucks me in, kisses me and tells me that even champion boxers get beat up in the ring and need time to recover. It doesn’t make them less of a champion. I cry myself to sleep with his comfort over me like a blanket.
PS 10/10

Health Log 5/2/11

Monday 5/2/11

Major sneezing and pressure in sinuses, mucus. Headache, chest pain, lower back pain. PAIN SCORE 8/10

2 scrambled eggs
1 piece brown rice toast, butter
Chicory drink

9am Dr. L. app. Went over all labs. Concurs with lupus diagnosis. Meds stay pat.

10am Pure bar, white tea

11am Veggies in chicken broth soup, supplements
mustard greens
red potatoes
brown rice
golden beet

1:30pm Sliced turkey, more soup
PS of 4/10

3pm 2 cups kettle corn, palm-full of raw cashews, white tea

5pm FAGE Total 0% yogurt, 6 crackers

6:45pm Veg broth with 4oz baked Halibut, lemon, olive oil, salt
3 slices sweet potato

7:30pmKaffree Roma , splash coffee, splash whole milk
Banana, swig of Kefir

I feel like all I do all day is think about food, plan food and eat food. Pretty even stomach all day. Slow thudding headache, no sharp pain. Cold/sinus/mucus/pressure continues. NO NAUSEA. DUDE. I’m not drinking enough water but I’m not sure yet how to get more stuff down my pie-hole. Made food lists.

Stayed up too late. Day ended with regular muscle aches and pains in upper arms, knees, chest and sides and lower back, headache – PS 7/10 A mid-day nap might have been a good idea. Low grade fever.

Health Log – 5/1/11

Sun 5/1/11

Morning pain in chest, lower back, neck not as acute, score 5

8am Cream of Rice cereal w/milk
1 piece brown rice toast, butter
1/2 coffee / 1/2 Cafix, milk

11am Pure bar, water

2:30pm Yoga
Breathing too deep, too fast, triggered chest right side pleurisy pain. Next time, start slower, maybe not so deep. Yoga was harder than I thought. My arms and shoulders and knees are really tender. Pre-class was waaaaay too long and talky. Lights gave me a headache. Heating bed made my chest feel better in 20 minutes. Need one of those, please.

Too long between foods. STARVING. Headache but feel stronger than I have in weeks. Let’s go to Outback for steak! Still craving ice cream and fries, trying to find a compromise.

Half a mini loaf of dark bread with butter
Side salad, sm amount of ranch
4oz steak, cooked medium
Med baked potato, butter, sour cream, chives
2 bites waffle/strawberry dessert

10 minutes later I feel intensely sick w/ nausea + headache, tell Joe I have to leave now or will be sick in the restaurant. Barely make it home before vomiting, stomach pains, lay down with heating pad. Later, hot white tea and few bites of kettle corn before bed.

Reaffirms needing gluten-free and way smaller meals. It was working. Don’t go so long in between foods and feel starving.

Health Log 4/30/11

Sat 4/30/11

9am 2 poached eggs
2 pieces brown rice bread
1/2 coffee / 1/2 chicory beverage, almond milk, agave

Don’t love the almond milk (or the rice milk) prefer nothing at all
Can’t taste the agave, even at a large amount

Got Prozac, 10mg prescription filled, purchases Aveeno sunblock
for my special, special sun-sensitive skin.

Went to Artwalk


1:30pm Little Italy Spaghetteria had chicken breasts with spinach and capers in lemon butter sauce, 1 bite potato

3:00pm Kettle corn, Pure bar, decaf coffee with 2% milk

5:30pm Nachos from Del Taco

Felt pretty good all day. Wore large hat and sunglasses, stayed in shade to minimize sun. Took breaks. 5 blocks or so of even-pavement walking with little pain in knees. Up to 2 dozes of supplements, breakfast then lunch. Sunscreen smells too strong, keep looking.

Bought Lupus, Alternative Therapies That Work by Sharon Moore.

If I’m going to eat junk food like Del Taco Nachos, eat them an hour before bed to minimize sick-feeling. Or better, AVOID.

Remember That One Time? When I Had Lupus?

Here’s the skinny – I have lupus. Here’s the story, and it goes a little something like this –

Lupus affects skin, joints, blood, and kidneys – for me specifically = pulmonary hypertension and pleurisy/chest pain 3 winters in a row in 2001-03 and now off and on, swollen lymph nodes, memory problems, confusion, headaches, high fevers, behavioral changes such as depression and bipolar, personality change and psychosis***, fatigue, painful joints, anemia, rash on forehead and beginning on cheeks, sun sensitivity, hair loss, abdominal pain, nausea, and vomiting, abnormal heart rhythms, blood in the urine and long-term elevated white-blood count since a child.

The Lupus begat

Fibromyalgia, a full party on its own including widespread musculoskeletal pain, more fatigue, sleep, memory and mood issues, more headaches and irritable bowel syndrome.

The Lupus also begat

PCOS -cysts in my ovaries causing pain, miscarriages, hormone disorders (more headaches, exhaustion again)

Hashimotos -hypo-thyroid, male-pattern baldness, weight gain, also exhaustion (I’M TIRED, OK?), more depression, mania, sensitivity to cold and heat, constipation, migraines, muscle weakness, cramps, memory loss.

And last but not least, The Lupus begat

Barely working liver and spleen, kidney issues, food sensitivities.

The DID is a separate issue, but by this time, your head is probably spinning and it might be hard to distinguish one thing from the other. Get out your punch card! You’ve all won a free hoagie!

And all because of a kitty that didn’t want to have a bath. Yes, my docs believe I have lupus because of an ornery, panicked kitty with bacteria on his claws that punctured me in the back and activated a lupus gene lying dormant inside me in 1997. And the leg bone’s connected to the brain bone. Who knew?

SO anyway, at this point I give you permission to use the phrase, in the most sarcastic voice possible, “Thanks A LOT, The LUPUS!”, every time something in your life goes wrong, because the kids and I are getting quite good at it. Example being, you all pile in the car to go out to dinner and someone forgets their wallet, well, Thanks a LOT, The Lupus! Or you knocked over your glass of milk. Or forgot someone’s birthday. Or stubbed your toe. Seriously. Try it. It’s good fun. The possibilities are endless.

Lupus is kind of scary. Here is a good website with lots of info. Lupus.org. I have Subacute Systemic Lupus, meaning it’s not full blown, if you can imagine. And actually, I can. It could be so much worse. Lupus in an auto-immune disease, so basically, your body eats itself up acting like your organs are foreign enemies that must be obliterated. Friendly fire, if you will.

In Acute Lupus, you’re losing parts or whole organs, taking steroids to slow the process and getting your affairs in order. You are your own worst enemy.

In Subacute, your body is just waiting for an excuse to be a real jerk, but it’s not quite there yet.

So, YAY for Subacute!

And here comes the boring part, mostly for my personal history record. I have a lot left to learn about lupus. I could be wrong about some stuff I think I know.

My plan of attack at the moment is building, not detoxing. My spleen and liver couldn’t handle it and my intestines aren’t working, so if I get more toxic, those toxins would just go round and round in my body killing me slowly with their song. I need to get stronger and help my immune system work if at all possible. I can’t stay in the sun very long. I can’t exercise vertically. So I have to get creative.

MY TEAM of docs and heathcare providers include

Yoga Instructor

My Rheumatologist and Homeopath have given me mostly the same diet suggestions, which follows closely to the Blood Type O diet found here. Heavy on the protein and dark green veggies, very, very low on the carbs and starches, light on the fruit and dairy. No sugar, caffeine.

What I currently take daily –

-Prescribed Meds
Synthroid 112 mcg/morning
Trazedone 100mg/night
Lamictal 100mg/night
Prilosec OTC 1/night
Acetaminophen as needed, up to 3000mg/day

Next week I will add-
And one of these – Mobic, Naproxen, or Relafen.

-Current Supplements
The Blood Type Diet “O”, Live Cell
The Blood Type Diet “O”, Polyvite
Nordic Naturals, Balanced Omega Combination
Dr. Clark Store, Allied Amino Acids

Next week I will add-
PepZin GI
Digest Gold

Also next week I will have more tests with the OBGYN and get a sense of the damage done to my ovaries, kidneys etc. It’s the missing piece of knowledge. Once I have those results, I’ll pretty much know exactly where I am and how far I need to go to get stable.

***YES. THERE IS A LOT TO PROCESS HERE. I HAVEN’T EVEN BEGUN TO FIGURE OUT HOW I FEEL ABOUT THIS. That is why it’s down here at the bottom and not explored in this post.