5/9/11

Monday, May 9

PS 7/10 Sluggish. Headache. Ache all over. Sad lower back.

7:20am 2 boiled eggs, hot drink

I feel like you feel when your period is going to start in a few days.

Official 2nd Opinion Day

10:30 App with Dr. K for official 2nd opinion from rheumatologist. I like her take on things the best so far. She confirms the diagnosis but tries to cheer me up. This will be more like you were in the room if you imagine her saying it in her great Indian accent:

“So, yes, you have lupus and that is maybe hard news. But, because you are sub-acute, we can think of it like you have a touch of lupus. You see what I mean? It’s more positive, so, we keep you alive, yes? Not so serious when we say it that way. So, let’s say you feel kind of crappy to really crappy most of the time. Ok? That’s Ok. Because it means you are not in hospital getting half your intestines removed, you see what I mean? You have it pretty good, sweetie, is what I’m saying, so don’t feel too bad. Just take your medications and get lots of sleep, stay out of the sun and don’t exert yourself.”

I would like a Tshirt with that slogan. Just a Touch of Lupus.

Matzo Ball Soup

12:30pm DZ Akins for Matzo ball soup, water, rye toast

5pm palmful raw cashews, water

Few more days and POW!

I totally have period brain and sadblah body feeling. Lower back pain and headache feel less like regular pain and more like intense hormone sadness.

5/8/11

Sunday, May 8th

Happy Mother’s Day.
PS 6/10 Lower back, arms ACHING bad, headache. Feel sluggish but mood is still good.

8am 2 boiled eggs, coffeechicorymilk

Breakfast with M&M.

10am Meet M & M for breakfast at Mission Cafe. It’s Mother’s Day so Wheee I’ll have whatever I want.
Blueberry pancakes, egg, potatoes, coffeemilk

We decide to go to see Win Win but see Kill the Irishman instead. Gory. Great acting, what I saw of it through my fingers.

At the movies. I have a palmful of raw cashews during the film.

We head to M&Ms for mellow hangout time.

3pm
Beer, watermelon, dates

Siesta

6pm whole wheat noodles, mozz cheese, basil, pine nuts YUMO

8pm half bean burrito, corn chips, pico de gallo, guinness
PS 6/10

5/7/11

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

8am
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
Supplements

10am Pure bar, water

NAP

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
Supplements

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
Supplements

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.

Seagull

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 –

Backpack/purse
– 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
Supplements

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
supplements

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
Supplements

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

8am
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
spinach
mustard greens
rutabaga
red potatoes
carrot
brown rice
golden beet
celery
leek

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
Supplements

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.

6pm
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

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.