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

Tea adventure: Rooibos

Since I seem to be leaning toward spicy teas, I have been sampling rooibos teas. As per the site, rooibos teas have more antioxidants than black tea though it goes through the same fermentation/oxidation process. And the site lists all of the minerals that the tea provides.

Green rooibos is supposed to be even more healthy because it doesn't go through the processes, but I haven't tried it yet.

There seem to be flavored rooibos teas as well (gingerbread in my cupboard for one).

So far, the rooibos teas I have had all benefit from double bagging and long steeping times, but they don't get bitter like green teas. So far, rooibos teas are topping my list.

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

Tea adventure: Chai

source: http://www.stashtea.com/info/Tea_Culture_Chai

Chai is now my "go to" drink at cafes. Its hot, spicy, creamy and FROTHY! (Its the frothy/creamy that I really miss about coffee.)

What's not to like? From http://www.chai-tea.org/whatisit.html:

Chai (pronounced as a single syllable and rhymes with 'pie') is the word for tea in many parts of the world. It is a centuries-old beverage which has played an important role in many cultures.
Chai from India is a spiced milk tea that has become increasingly popular throughout the world. It is generally made up of:

• rich black tea
• heavy milk
• a combination of various spices
• a sweetener

The spices used vary from region to region and among households in India. The most common are cardamom, cinnamon, ginger, cloves, and pepper. Indian chai produces a warming, soothing effect, acts as a natural digestive aid and gives one a wonderful sense of well being. It's difficult to resist a second cup. 

All of the spices listed are on the "good for me" list and I agree with the "wonderful sense of well being" comment above. 

I think I'm a spicy chai girl and not a sweet chai girl. I had half spicy, half sweet, and that was good. but I like the heavy taste of the all spicy chai. Still not as deep as coffee in flavor, but that's ok for now - until I find the ultimate.

At home chais:

• I bought a Gingerbread Chai at Christmas time - which I just read on the can that it is a rooibos tea. It came in a nice metal can that I like. It is tasty and tastes like Christmas, but like all bagged teas so far, I found that I have to double bag it to get the best flavor. Add milk and it is a good fall back and tasty to keep around but it isn't sensational.
• Something to note: chai is made with black tea - which is not on my list of good teas (oolong, white, and green). So I found a chai green tea. Double bag it, but it is still weak. Add milk. It would probably be better with more spices added? Steep for as long as possible, but be very careful that you don't let it go too far or else it becomes bitter and grassy. This is one you have to take the bags out of at a certain point...and I usually lose interest in it before I finish the cup.

 Maybe it's obvious to tea people that you have to remove the bags from green teas so they don't turn bitter? But for black and red teas I keep the bags in until the water is gone to get as much flavor out as possible.
This may make me a Luddite.

In essence, when I'm at a coffeehouse, I can order a chai and still feel like I fit in and not get weird looks from those around me with coffee. I am still looking for that really good "at home" tea.

The search continues.

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?

mixed bag

I had three doctor appointments this week, and unfortunately, it resulted in a mixed bag of emotions and findings.

Monday was my appointment with the rhumatologist. She was very friendly and interested in my case. She asked tons of questions about what I may be experiencing as far as symptoms. Most of which I answered "no, I wasn't experiencing that". Then she did a few muscle strength tests, such as holding my hands apart and telling me to put them together and then the reverse, holding my shins against the bench I was sitting on and telling me to push her away, and pushing down on my thighs while I was sitting and telling me to lift her. I must have passed those tests. Not only did I push her halfway across the room, she didn't order any rhumatology labs except for more blood work and a chest xray.

She ordered 7 vials-worth of blood tests.

She also is not completely convinced that I have dermatomyositis.

What.

She can see where the dermatologist was going with that diagnosis, but she also saw way too many things that didn't support it. Like the line of bumps along my fingers. Like the fact that ALL of my blood tests have come back normal. And the blood test that showed my ANA elevated was a "minimal bump" in the scale. Barely worth noting.

I left her office with "don't worry, we'll figure this out, I'm optimistic. Come back in a few weeks after the Plaquenil has time to do its thing (it takes up to 3 months to come to full strength in my body). And we'll see what your blood test say."

I felt like there was a glimmer of hope that this might be something different. Something not as major. I tried not to think it might be something worse.

Tuesday I pissed off the dermatologist when I told him that the rhumatologist wasn't convinced of his diagnosis. He actually got pissed. She didn't run any of the tests he wanted her to. She questioned his diagnosis.

Note that he has never made mention of the bumps on the sides of my index fingers and he diagnosed me almost immediately upon seeing me with dermatomyositis.

He said that I wasn't getting better that next steps may include a CT scan to look for malignancies an a stronger drug. (even though the current drug isn't up to speed yet). He scolded me for not staying out of the sun. I had to stay as far from it as possible - even windows. Apply and reapply sunblock. He was almost yelling.

I told him I wasn't going to live in a black box. I would wear the sunscrean and cover up as much as possible, but I would not live in a hole.

He filled out a form for my next visit in 8 weeks and left the room saying that he had to have a talk with the rhumatologist. H left the paper on the counter and barely said goodbye.

Wow.

I cried the rest of the day.

Wednesday, thankfully, I had no appointments. I enjoyed the day of rest.

Thursday I saw my PCP or general practitioner, Matt. He is so mellow. I actually enjoy going to see him. We talked about the results of the tests he ran. I am a very healthy person according to him. My cholesterol ratios of good:bad were off the charts he said. He was amazed. Everything else was spot on.

I told him about my previous appointments and how the dermatologist reacted. He said I was right to be concerned about that reaction. No doctor should be offended that another disagrees with him. And he agreed with the rhumatologist that the bumps on my index fingers didn't coincide with the current diagnosis.

Then he said that he had just met with a group of dermatological pathologists. The lead is nationally known and tours the country giving talks, etc. They told him that if he ever came across an odd or cool or exciting skin case, to send them photos and a back story and they would investigate it.

Lo and behold - here I am!

He took all kinds of photos and asked me questions to write up the back story...including what types of "outdoor chemicals" have I been exposed to. That was interesting. "Outdoor chemicals"? Like pesticides and auto stripper and paints. I told him I grew up on a farm and probably got crop dusted more than I should have. He took tons of notes and said he'd send it all off.

So I left feeling hopeful again.

Thankfully I don't see another doctor for 8 weeks...unless my nerves fuck up my flora:fauna ratio...

I can't wait to hear what the pathologist team comes back with. There will probably be another biopsy, but I'm ready and willing to hear another opinion. Another opinion means more options. I'm always good with that.