Follow up dermatologist appointment

I mentioned it earlier, but haven't summarized my latest Dr. visit (June 25th).

I had Jim come with me because I was afraid Obediah would yell at me again for not staying out of the sun, or not getting better, or because the rhumatologist didn't agree with him. Not sure if it was because Jim was there or not, but Obediah was actually nice this time.

He had the rhumatologist results: all clear. Nothing abnormal. Perfectly fine.

He saw that the rash was getting better, but not at the speed he was comfortable with. He wanted to move me to a new drug (Methotrexate). But the side effects sounded like they would harm my organs faster than this disease could. I am waiting to talk to the rhumatologist before I make that decision.

As stated in my earlier post, Obediah did change my topical ointment, which is clearing up my hands nicely, and he gave me an serum for my scalp to curb the itching there. That itching stops all together, which has been WONDERFUL.

In other news, my PCP heard back from the pathologists in Arizona. They agreed immediately with Obediah's diagnosis. No need for further testing. It is confirmed that I have a "classic case" of dermatomyositis - though I don't have the "myositis" part...yet...

Need to keep my physical activity up and keep sticking to my diet to help ensure that doesn't happen.

Keep Calm
Keri On

My hair is falling out today

I feel like I am losing it by the handfuls today. Though, there have been times in my past where this happens sporadically - hypothyroid and curly hair in general falls out more than most. There are still no big gaping holes where hair used to be. But there was a ton of hair in the sink this morning.

That is scary as hell. It always makes me feel like I'm losing this battle.

The rash is about the same as it has been. The dermatologist put me on a new ointment that is doing very well on the bumps on my hands. The rest of the rash is still migrating around my body. This week, it is prevalent on my forearms, when a week or so ago, it was worst on my shoulders and back.

The dermatologist also gave me a serum for my scalp to ease the itching there. This has been a godsend, but I think it is impacting my hair loss. There is a ton of alcohol in it, so I think it is drying out my scalp? Maybe?

I am going though sunblock like crazy.

The Dr. also pointed me to the Mayo Clinic to read up more on my disease: http://www.mayoclinic.com/health/dermatomyositis/DS00335. Good information. Nothing really new. I think the fact that it isn't anything new or earth-shattering there has made me feel a bit better.

Everyone is being very supportive. I know they don't know what to say in order to help. I feel bad that I look for so much strength from others when they are already giving me everything they have.

Just keep swimming.
Breathe
stretch
walk
ride
BREATHE

Time check

So I haven't heard from ANY doctor in weeks. Nothing from the rhumatologist about the 7 vials of blood they took. Nothing from the PCP about the photos he sent to Arizona.

No news is good news?

I will be calling soon I think...maybe...really don't want to start up more rounds of appointments...

My hands look great. The bumps are smaller and shrinking all the time. I still have redness around my nails. The rash on the rest of my body is mostly quiet. I get the occassional outbreak of itches on my right arm or on my hips (newest location). Its the back of my head that's killing me though. The spot just above my neck is sooo itchy, I act like I have lice sometimes. I've started putting Cortizone on my scalp. Benedryl helps too.

In other news, my new diet is going well. I really don't miss a lot of the foods I can't have. Ok, I miss tater tots. A lot. My boyfriend made me a delicious gluten free chocolate coconut curry cake for my birthday. It was so good, it lulled me into thinking I could eat other baked goods - like the banana bread my daughter made yesterday. Not so much. I've been away from wheat for long enough that my digestive system and skin reacted to the regular flour. I was very itchy last night and my stomach was rolling. I'm better today, but I need to find gluten free flour for baking now.

Then there's the coffee to tea transition...

I can now only handle a small cup of coffee (4 oz?), and I have to drink it slowly. I am truly weening off of my favorite hot beverage. :(

Finding "the tea" for me is still an ongoing experiment/experience. Luckily, I have fabulous people around me that are more than willing to help me shop/taste/brew my own teas in fun creative ways. I now have a manatea tea infuser that hangs off the side of my tea mug - in which, by the way, the Virgin Mary appears as an apparition in the bottom when the tea is gone.

What could possibly be better than that?!?!

Until I have more Dr/medical notes to share, I will be keeping notes here on what I find.

Tea Russian roulette

I've been on the anti-inflammatory diet for 2.5 weeks now (after shopping). I've lost 3.5 pounds. I feel decent.

I still feel more tired than I did when drinking coffee. I just don't move as quickly.
I still get mild headaches.
I still itch occassionally
I still flare up occassionally

GOD I MISS COFFEE!
And for Christ's sake when can I have dessert again?!?!?!

There.
I said it.
Outloud.

Thankfully there are tasty veggies and berries out there. I can't complain about more fish. I love it.

But I hate not knowing what "my drink" is at the cafe. I still need to read the tea menu like its a game of Russian roulette.  Will I pick a tea that is good and yummy or will I pick one that makes me wretch...which I've done. I will never have gunpowder green tea again. Why pay for it when I can just steep my lawn clippings?

WetFoods

WetLeather is my motorcycle family. WetLeather is what you get when you ride your moto in the rain. WetLeather is a cocktail party disguised as a motorcycle group. WetLeather is a food group with a motorcycle problem - so much so that they formed WetFoods for all of the foodies to discuss recipes. I went up to WetFoods to ask about anti-inflammatory recipes. The responses are still coming in!

So far:

• http://www.seriouseats.com/2012/11/roasted-butternut-squash-and-red-onion-with-t.html Doesn't have the exact recipe, likely due to copyright, but it's pretty
  obvious. The Tahini-sauce is just tahini with lemon to taste, thinned with
  water. I don't add garlic and don't remember that from the actual recipe --
  I have the book. I do sprinkle with parsley for additional green stuff, and
  if you don't have za'atar, you can skip it. It's still very good.
• This time of year look for hot spinach salads, salads with broccoli, etc.
  Look for vegetarian cookbooks
• To eat more fruit with whole grains, consider Brown Betties with most of
  the sweetener left out. (Try mixing some chopped dried fruit into the
  oatmeal etc. for sweetening.) Make dried fruit compote to put on whole
  cooked grain like oatmeal.
• To replace the red meat umami, try Shitake mushrooms. Go to an Asian market
  where you can get them cheaper and fresh, then fry them. Discard the tough
  stems (or use for broth).
• Mint tea (check that it has no black tea!) comes in a variety of tasty
  flavors, ginger mint is one of the best. As far as the deep dark rich comfy feeling, hot chocolate. Or for something completely different, limeade with steeped mint and
  lavender, filled out with sparkling water.
• Coffee =Acids.  There's issues with coffee besides just the caffeine.  I got around
  it with my girlfriend when she gave up coffee by making a drink using
  baking cocoa, milk, and sugar with vanilla and cinnamon.  Some good
  anti-inflammatory ingredients in there, a nice rich dark flavored drink
  like coffee, and much lower in the more troublesome acids and other
  coffee-problems.
• There's something out there called "Choffee"; a tisane made from spent cocoa
  beans.  Several of my friends are mad about it, saying that it covers their
  urge for that dark, good feeling from coffee.  I'm sure you can find it on
  the web somewhere (http://www.drinkchoffy.com)
  

  • Nice stuff, pleasant to drink.  You have to brew it in a coffee press or a
    metal cone filter because the cocoa butter clogs paper filters.  No luck so
    far getting it to work as an espresso. It's sold by pyramid scheme.  I picked up a small bag of it at a weird privately-run indoor farmer's market on Sandy in Portland.
•  Vegetarian times is a wonderful magazine full of great ideas and
  inspiration. We cook a meal at least twice a month for wendy out of the
  mag. Wendy eats seafood in her diet, so we sub fish or seafood for the
  protein (usually tofu) and it turns out great. She takes the leftovers for
  her lunches. I will happily send along our enhanced recipes.
  Trader Joe's sells a fine soy chorizo, usually in the fresh veggy section
  that will happily enhance stews,chilies, soups, jambalayas, gravies...its
  just great. Risottos are a wonderful way to extend and enhance veggies, and
  seafoods. "better-than-bullion" makes a marvelous selection of veggy, fish,
  and meat pastes over in the soup section usually. Buy veggy stock and
  enhance them with additional herbs and spices to give them pizzazz. Quinoa
  and mixed rice/grain mixtures you will find in the stores and Costco. I use
  rice flour in place of wheat in my cornbread recipe from "Cook's
  Illustrated". Robynn has made a number of "gluten-free" mixes from "bob'
  red mill" just outside of Portland, with tasty success
  Teas...
  I stopped drinking coffee years ago. I love the smell, the taste, but not
  the jitters or the acid stomach. Black teas are less caffeine and you may
  have to experiment with which one cause flare ups. I have two favorite
  sites for tea...".Strand tea" in Sandy, oregon (yes, just a few miles from
  you), they carry a large selection of black, green, oolong, and blends. My
  second is "upton tea", they publish every quarter, a booklet of available
  teas. Both have easy to use websites and are fast to your doorstep with
  their products. I love them both.
  Where to start...if I remember Portland, there are a few tea houses
  downtown, where you can taste test teas. Google their locations and go play




To do:
- go find choffy
- find vegetarian times magazine
- investigate brown betties and dried fruit compotes

dilation

Ophthalmologist appt: done...ish!
It was back to Providence for me this morning for yet another set of tests. Confirmed 20/20 and 20/25 vision with slight astigmatism in the left eye...but then they dilated my eyes and ran scans on my retina. Multiple flashes of light without blinking. Not blinking for a good 30 seconds as the scan ran.

I felt like asking if there were weeping angels there.

I have to go back for a vision field test next Friday, the 12th. They couldn't do that while my eyes were dilated. I will also bring in my current glasses to have them compared to the prescription they gave me today. I doubt I'll need an upgrade?

All said and done, they didn't see anything abnormal, but that was to be expected. This was a baseline test. The Plaquenil can be damaging to the patient's retina if taken for a prolonged period of time. I have no idea how long I will be on this. But if taken for over a year, I get to go back for more in a year's time.

The dilation finally wore off completely around 11. Have to remember that so I don't miss work afterwards...

In other news, I downloaded a calorie counter app to my phone and am logging my food intake there. So far, so easy. We'll see how it goes!

flare ups

Last night, my hands were flaring and I couldn't tell what was making them do so. So I started a food log (flog?).

So far today, my intake has been:

1 cup detox tea
1 cup Moroccan mint tea
1 slice whole grain toast with Adam's peanut butter and 1/2 banana (shouldn't do bananas)
left over chicken stir fry with brown rice
bubbly water
$.50 piece size of dark chocolate bunny

BAM! there go my hands.
They are now red and itchy.
Like instantly.

Dammit, I was hoping to finish the bunny :(

Maybe more investigation is needed...is it ALL dark chocolate?
The food pyramid said dark chocolate of 70% cocoa or more...I don't think the bunny made that mark...still tasty though...hmmmph.

General Practitioner appt: Made

Meeting Dr. Matt Rose in Vancouver at 11am
Office open for appts Thrus/Sat during the day and Mon/Tue/Wed after 5pm (WOW!)

more data

My hands are really really red and hot tonight, and they've been doing so well lately! What's changed? Is it the food? the stress? B suggested that I keep a food log along with this blog to see if there is any pattern.

So, here are today's foods:

.5 cup coffee
water
2 scrambled eggs with salsa and cheddar
2 cups detox tea
bison burger with tomato, lettuce, onion and a side salad
2 pints of black IPA
water
chicken pot pie
1.5 glasses red wine
one ear dark chocolate bunny

My hands were beginning to get red after lunch. Now after dinner, they are very red, hot and itchy.
Between lunch and dinner, they seemed to have calmed down.

is it the red meat or the alcohol?
More days of food log will help I think.

Plus I'm still going to see the naturopath...

Until then, more ointment and either tea or water.

Read Sharon's blog: Done

Here are the items she wanted me to read:

1.  Detoxing
2. Anti-inflammatory Diet & Nightshades
3. Fibromyalgia

Detoxing is actually about getting rid of the bad energy in your body when you are stressed or just need to relax. Sharon lists steps to take to press out the stress down through your body and out your toes. I love that she added a quickie version that I can use in an emergency :)

Anti-inflammatory Diet and Nightshades: I love how Sharon puts all of the information out there in lists without a ton of extra information that can make (me at least) lose interest in reading further. Here is the gist of it:

1) Avoid sugar. This includes soda* and high-glycemic foods

2) Avoid fried foods. 

3) Red meat is a problem for some people, especially the grain-fed supermarket type. Grass-fed organic meat is less problematic.

4) You can counteract pain by eating ANTI-inflammatory foods. Dark leafy greens like kale and spinach will help a lot. Berries (especially blueberries), turmeric, garlic, celery, pineapple, cocoa, ginger, and foods containing good fats (extra-virgin olive oil, avocado, salmon, nuts) are great, too.

5) The Nightshade (Solanaceae) plants: tomatoes, potatoes, peppers, eggplant and tobacco

Fibromyalgia: though I don't have this particular condition, a lot of the information is still relevant.

I could kiss Sharon for posting this part:

"There’s a Southern saying “If you’re going through Hell, don’t pitch a tent!” This is perfect advice. Resist the urge to wallow. Focus on the things you CAN do to make yourself better, and keep moving!" 

and this:

"Keeping your identity as separate from a disease, and focusing on the actions you can take, is important for everything herpes to HIV. Some people with long-term managed illnesses, like diabetes, actually wind up healthier because they get serious about their diet and exercise. This life is what we make of it. Go make something awesome! "

 

The rest of the article outlines how sleep, nutrition, relaxation, good touch, light exercise, and counseling can help one cope with FM - and most other trials of life as well!

This part rings true for me:

" Kidney* Deficiency (either Yin, Yang, Qi or Essence Deficiency) – there will be impotence or lack of libido for males and infertility issues for both males and females. Other symptoms: sore lower back with restless leg syndrome, irritable bladder, dysmenorrhea, amenorrhea, premenstrual syndrome, hot flashes and night sweats.
* Please note that the Chinese organs are energetic concepts and may or may not relate to the physical organs!"

 When I was with Sharon this morning, she attended to the Kidney deficiency above. When she was done, I didn't have just the red dots that the needles made, but I had a full red line between the dots. Meaning that the Kidney work she had done did work, and worked well. :)

to do: go shopping!

dermatomyositis

From Wikipedia: http://en.wikipedia.org/wiki/Dermatomyositis

Dermatomyositis (DM) is a connective-tissue disease related to polymyositis (PM) that is characterized by inflammation of the muscles and the skin. While DM most frequently affects the skin and muscles, it is a systemic disorder that may also affect the joints, the esophagus, the lungs, and, less commonly, the heart.

I can't even pronounce it yet.
From Websters: http://www.merriam-webster.com/dictionary/dermatomyositis

der·ma·to·my·o·si·tis
dər-mə-tō-ˌmī-ə-ˈsī-təs

 So far, I only have the skin part of this disease. My blood tests have all come back clear except for the ANA test, which came back positive, which is why the dermatologist diagnosed me with dermatomyositis. There! I spelled it out myself instead of cut/paste from Google. (little win)

So why do I feel I have to keep my dermatologist under control? Because he was so fricking excited to see the rash I came in with. It is apparently his area of interest, so he geeked out on me. LARGE LONG words, lots of hand flailing, talking 1000rpm. He scared me. I wasn't sure if I was going to die, or if he thought this was a cool thing to have. It wasn't until I started crying (lots of that these days) while he took the skin biopsies that he realized that I was scared.

After that, he was great. Spoke to me in common terms, gave me a printed list of to do items, told me that we caught this early and he didn't expect this to become too big of a problem. He sent me home with a prescription for an ointment (clobetasol propionate) two handfuls of sunblock and did the parental finger pointing when he said to use all of it. "Reapply!" and to wear a broad brimmed hat.

At my second visit to get the results of the bloodtests and the biopsy, he said he wasn't happy with how long it was taking for the ointment to work. He prescribed a drug then and set me up with another list of appointments to make with a rhumatologist (for testing muscles) and an optimologist (for a baseline test for my eyes). That last part scared me again. They drug he prescribed is hydroxychloroquine (Plaquenil). It actually messes with my DNA to hinder it from reacting to UV rays.

My DNA?!?!?

Plus it could cause liver inflammation and impact my eyesight - hence the baseline eye exam. Yay me!

He promises that the effects are reversible after stopping the medication....How long am I going to be on this again?!?!

So now I'm looking into naturopaths to help me make it so this mutant-causing (paging Dr. Xavier) drug become unnecessary...I hope...

to do:

1. start taking Plaquenil (done)
2. make appointment with rhumatology (done. April 22nd)
3. make appointment with eye doctor (done! going in on April 5th!)

Welcome

As it says in the description, this is my place to rant, to think things over, to organize my thoughts, and my to do lists. As I learn more about the skin disease I was just diagnosed with (dermatomyositis), I will be adding my notes here as well - just to keep things straight in my head.

For instance, I saw my acupuncturist this morning. Sharon is a doll and an angel. She listened to what was ailing me, talked to me about the information that I could find on her blog to help with the inflammation and then took my pulse and found where to put the needles for today's session. As soon as the first needle went in, I began to cry; not because it hurt, but because I could finally relax and let someone else care for me for a while. The needles took the tension right away. As I "cooked" for 20 minutes, I cried more and just let the needles do their work as Tibetan music played on the ipod.

Sharon emphasized how important it is for me to lessen my stress load in order to deal with this disease. The stress adds to the inflammation.

Along with beginning yoga again and taking more walks and motorcycle rides, I need to be able to offload some responsibility, or just let some things figure themselves out. I've been carrying a lot of other people's baggage around with me lately. That needs to end - for my sake as much as theirs. I hope that they realize that I have not left them, but I just can't carry their load as I need to care for me right now. I hope they will be there for me even after I let their loads go.

With the detox, I may not (probably won't) be able to go out drinking with them for the foreseeable future. Yes, I rely too much on alcohol. Sue me. I hope they don't mind meeting me at tea houses instead. I know that sounds ridiculous, but it worries me. I like pubs - not only for the beer, but for the atmosphere. I can probably still frequent pubs. It just won't be as much fun drinking water/tea/etc while they are having dark and stormies.

List of things to do this week:

1. read Sharon's blog (done)
2. make appointments
1. opthomologist for a baseline prognosis on my current eye health (more on this later) (done! going in on April 5th!)
2. naturopath to help me find natural ways to cure my body
3. general practitioner to help me keep the dermatologist inline (more on this later as well) Done! 4/4 11am
3. go grocery shopping for foods that will detox and help me fight this
4. find yoga/pilates videos I can do at home: done! ordered from Amazon.

nice to have:

• set up extra bedroom as yoga studio 

PS. it doesn't suck having a purring kitten on my lap