Archive for the ‘Rheumatoid Arthritis’ Category

Sick and Tired and Tired and Sick – Or why I’ve been gone

My last post published here was in August right before school started.  Summer is usually when I have more time to blog since I’m not working full-time so I expected my post frequency to decrease.  But I didn’t expect it to stop.

But we can’t always see what’s coming, can we?

I started teaching in a different grade this year and found that my responsibilities increased and therefore my planning time increased.  This happened right at the same time my husband, Mark,  left a profession he found unfulfilling without knowing exactly what would be next.  I’m a big proponent of “leap and the net will appear”  and I also firmly believe that life is too short to be miserable so I was supportive, but financially it changed quite a bit for us.

To be honest I had been growing unattached from wanting to blog.  I had loads and loads of pictures and things to share but very little desire to blog.  I had no desire to cook and wasn’t enjoying food or thinking about food or talking about food.  With all this going on, and a really negative comment on my facebook RA Vegan page that caused me to question myself, I decided that I needed a break.  I needed to not feel obligated to photograph my food every time I cooked or ate.  I needed to feel like I was making healthy choices for me, not because I was going to be telling others about them.  And I needed to decide if I wanted to continue with this blog and the facebook page.  So I announced on facebook that I was taking a break and I just went about my life.  Not only did I not post anything but I didn’t read or comment.  I took a break from being The RA Vegan and was simply Jen.

Mark found a job he loves and a new calling.  Financially it’s made us make choices, but I’ll choose happiness over money.  Just to be clear, I’m not talking about choosing happiness and losing everything.  I’m talking about still being able to pay our bills but giving up some luxuries and things we had grown used to in order to be happy.  Things were looking up.

But I kept getting sick.  Not that unusual as someone who takes immuno-suppressants, but the frequency was unusual even for me.  One infection after another until I lost my voice and ended up at my doctor’s on November 5th expecting her to say I had yet another sinus infection.  Instead she prodded and looked and sent me for blood tests, telling me she suspected mono.  When she suggested, in her office, that I might need to take some time off I told her she was crazy.  I was the main breadwinner (and gluten free & vegan bread is pricey!) and I was just going to have deal with it.  I agreed to take a few days off, maybe even a week, but that was it.

I felt worse and worse and realized that sometimes you just have to deal with the reality in front of you.  So I took a month off.  We got even more creative with finances, but we made it work.  And I basically spent the entire time either lying in my bed or lying on the couch.  I didn’t leave the house for almost 2 weeks and I sent my family off to enjoy Thanksgiving in a different state without me because I couldn’t make the trip.  Once, when I got my haircut, I came home and took a 2 hour nap.  It wasn’t a pretty time.  I read quite a few free books on my kindle and ate more peanut butter and jelly than I’d like to count.  I didn’t have much of an appetite and was forcing myself to eat for much of the month.  Luckily things started to turn after Thanksgiving and I started feeling human again though slowly.  And as I started to feel better I realized I was thinking about food and cooking again; that I wanted to connect with the community I had become a part of again.

So I started posting on facebook, and reading some things.  I started making a few comments, and I pulled my camera out again.  I started cooking again and enjoying it.  And slowly I felt like Jen and The RA Vegan were becoming one again.

This is not a prolific blog and will probably never be.  I don’t make any money from doing this, it is simply an opportunity for me to express myself and talk to amazing people.  But I missed it.

Though I did learn that I can’t feel obligated to post, it will only make me want to do it less.  So I’m going to post when I want, and not when I don’t want.  I’m going to chat on facebook about veganism and having an autoimmune disorder and life but not feel guilty if I go a few days without saying anything.

Life is for living well, and being sick and tired is not a way to live if you can help it.  I don’t have control over the auto-immune disorder (which was still there during what I now refer to as ‘the mono invasion’) but I have control over how I respond and live my life.  I want to be happy, so as long as writing this makes me happy I’ll keep doing it.  If it doesn’t then I’ll stop.

I hope your second half of 2012 has been good!  My hope for us all is that we find joy and happiness and health in the New Year!

Now who wants to see the pictures of meals I’ve eaten?  LOL


Strawberry Shortcake, Vegan Style

Yesterday afternoon E and I were talking about what we wanted to bake.  I suggested blueberry muffins.  She said that sounded good, or maybe strawberry shortcake.

Fast forward a few hours and Mark texts me that he was thinking strawberry shortcake.

Strawberry shortcake it is!  But not just any strawberry shortcake, a non-traditional vegan strawberry shortcake!

Now, I need to point out, that since T is at sleep-away camp this way week I am trying to use up some of my stash of non gluten free flours, so this one is not gluten free as written.  I think, though, that subbing out a gluten free flour mix would probably work.  I haven’t tried it so if you do, please let me know.  The directions are made to be RA hands friendly, so they include some household machines like a food processor and a stand mixer.  You could certainly mix the cookies by hand and use a hand mixer to make the sauce.

Strawberry Shortcake, Vegan Style

1-2 cups fresh strawberries

1/2 cup organic sugar, divided

1.5 cups self rising flour (or 1.5 cups flour plus 2.5 tsp baking powder & 1/4 tsp salt)

6-7 tbsp dairy free butter (I used earth balance from the tub and it was just fine)

1/2 cup dairy free milk

1 can coconut milk, chilled (I put mine in the freezer for about 20 minutes but the fridge all day would work too)

1/4- 1/3 cup powdered sugar

1 tbsp vanilla extract

Slice the strawberries and mix with 2 tbsp sugar.  Cover and refrigerate while working on the other components.

Heat the oven to 400 degrees and grease a baking sheet.

In the food processor put 1/4 cup sugar and the flour.  Pulse until combined.  Add the non-dairy butter and pulse until it is just starting to resemble crumbs and you can tell that the butter is no longer in big clumps.   Then turn on the food processor and slowly add the non-dairy milk until the mixture forms a ball and pulls away from the sides.

Take out a clump of dough about the size of a golf ball.  In your clean hands first roll it into a ball and then pat it into a relatively flat circle.  (You could definitely roll the dough out but my hands do not like that!)  Put the circle on the prepared pan and repeat with the rest of the dough.  When done take the remaining 2 tbsp of sugar and sprinkle it on top of the rounds.  Bake for about 18 minutes or until they are starting to brown on the bottom.  Leave them on the sheet to cool.

If you have the chance to chill your stand mixer’s bowl and mixing attachment before doing this next step that would be for the best, but it’s not imperative.

While the cookies are cooling pour the can of chilled coconut milk into the stand mixer.  Mix for about 2 minutes.  Slowly add the powdered sugar, scraping the sides if needed.  Then add the vanilla and continue to mix.

To assemble your strawberry shortcakes put a nice scoop of strawberries in a bowl, add a cookie, and top with sauce.  Beautiful and incredibly tasty!

We found that crumbling the cookie up on top worked the best for ease of eating.

But however you eat it, it’s good!

My boring vegan life?

Ok.  I don’t really think my life is boring.  I mean, any life that has this happening in it can’t be boring, right?

Yes, the dog jumped onto the lime to be with the kids.  Of course, the dog can’t get out of the pool so when she does this it necessitates some assistance at getting her back to land.  So nope, it’s not boring.

Last week I spent the week at the Arts in Motion Academy at Salisbury University learning about ways to integrate the arts into my teaching.  My favorite part was beat-boxing and this article showcases some of what we did.  (My group is not up there, but we did something similar.)  I also did a play to demonstrate how early man discovered fire could do things wherein I played the very difficult role of a bird shot down into the fire!  I learned to paint on screens and how to dance mutiplication patterns.

This screen painting was supposed to be folk art of fruit but it really turned out to look like a clown face!  I might not be the most gifted visual artist, but life is not boring!

We went out to lunch 4 of the 5 days and I got some wonderful Vegan food including this Vietnamese food and Mediterranean food.

And while I was taking this class my niece and nephew were staying with us and attending nature camp with my kids.  They swam in the mucky disgusting pond everyday and came home smelling, um, interesting.  I got very talented at spraying out their shoes with the hose!  Not boring.

And today, the first weekday after my class, I got caught in a torrential downpour, had 5 kids running around my house, and cleaned out my fridge.  How could you think refrigerator cleaning is boring??

But the thing is, I haven’t done a ton of cooking so I haven’t been able to post any recipes.  I do have two posts in the works.  One is about being a “bad vegan” and the foods I don’t like.  The other is a review of the fantastic new cookbook “Great Gluten Free Vegan Eats” by Allyson Kramer.  But, I don’t always post what I’m thinking about because I don’t want to bore you.  So, what would you like to hear about?

Are you interested in how I navigate being the only vegan in my circle of friends?  How I deal with the pain of RA?  How I relax?  How I deal with teaching all day and raising my kids while having RA?  Restaurant reviews?  Something else?  Or are you mostly looking for recipes?

Seriously.  Are there any specific topics you’d like me to cover?  My brain tends to jump around pretty intensely and it will probably still do that, but I’d like a little help focusing on what you’d like to read about.  Because I know you’re not here to see my beautiful screen painting!  LOL

Because one size does not fit all or even most…

I am not an expert on health.  I am just a mom, a wife, and a teacher who has some sort of an auto-immune disorder that still lacks a diagnosis.  (You can see my About me page for the specifics.  They thought it was RA and still think it might be but are not sure due to the fact that I am sero-negative.  My medical treatment is pretty traditional for RA, though.)

The choices I have made for myself are just that, my choices.  I’m trying to do the best I can with what I’ve got.  The problem is that even the experts disagree.  Last year I attended the Take Back Your Health Conference in Virginia.  One of the things that I found both fascinating and difficult was that the speakers are all very different.  From one talk to another completely different information was presented.  This was intentional.  The creators specifically wanted us to have lots of different options because we are not all the same.  What works for one person does not necessarily work for the next person.  We are all different and this difference is precious.

But that definitely highlights the fact that a one size fits all mentality no longer works.  It’s why some of us are seeking alternatives to traditional western medicine.  But that logic would also hold that alternative treatment is also not a one size fits all situation.

I have chosen, for myself, a combined method.  I still take medication but I also have made some major lifestyle changes in order to help me best deal with my auto-immune disorder.   It helps.  I know there are other changes I could (and maybe should) make to my life and I’m doing them slowly.  At my own pace.

The reason I’m thinking about this is because I attempted a juice fast when school got out.  I’ve been talking about it on my RA Vegan facebook, which means people know.  I’ve gone almost three days and while there have been good things there have also been some things I’m a little concerned about.  Nothing awful but enough that I think it’s time for me to stop.

I know I *could* go on.  But *should* I?

And I’m a little worried about saying that publicly for fear I will look like a quitter by those who feel strongly about how long one should do a fast.  Of course, to some of my friends and family just saying I was doing it made me look crazy anyway.

But one size does not fit all.  I’m trying to make the best decisions I can for myself every day.  Good choices are good choices even if they are not the same good choices others make.

It’s hard when you’re public about things you are trying, because then everyone knows when you stop.  I’m glad I tried and I might try again.  But, for now, this is what I need to do.  For me.

When it rains it pours, or craziness in my vegan life!

This is the time of year when things heat up in the world of a special education teacher.  We’ve got IEPs (Individualized Education Plans) that must be re-done every year and many of them come due now.  We’ve got the end of the year coming which is always a push to get them done.

So that’s part of the reason I’ve been absent.  The other reasons range from our family trip to Disney to sickness to all the kid events we’ve had lately.  And to top it all off the last reason I haven’t posted lately is:

I dropped my laptop and shattered the motherboard.


I wish I could say I had a good story for what happened.  (Zombie Apocalypse?)

But nope.  I just dropped it.

A dear friend, who is our tech guy, was able to recover my pictures which is phenomenal.  But this means I haven’t had any way to download new ones (hence the lack of my post on Disney) or a computer set up for me to blog on easily.  Plus, and I have to admit this, I hate Mark’s laptop.  Something about it doesn’t fit my hands correctly so it makes it tough to use.

But last night we went out and bought a new laptop just for me.  It’s the right size for my hands and I can customize it for blogging which is a wonderful thing.

Tomorrow night is a the Slow Food Delmarva event at Hobo’s where I gave away tickets so I’m super excited.  Saturday is FanCon and then the Salisbury Festival.  Sunday I intend to relax and hopefully get all those Disney photos downloaded and my post written.  But please know I have missed blogging and am glad to have the opportunity to get back into it.

I leave you with a few photos of the recent happenings here.  Just no Disney pictures.  Those deserve their own post!

The first weekend back E’s Destination Imagination team competed at the state level.  Mark and I are enjoying a beautiful day on the University of Maryland Baltimore County Campus.  I was super impressed with the vegan food options but less than a week back from Disney and just after 2 days of having a stomach virus (all vomiting and no eating) it was a tough day.

I’m still cooking and eating, but there hasn’t been much that was super fancy.  The rooster and I enjoyed a vegan orange julius.  The rosemary bread was topped with hummus and tomato, and we took advantage of the early spring to do some strawberry picking.

Last weekend T went to engineering camp about 3 hours north of us with the members of his competitive lego robotics team.  He went up on Friday with the parents of another child but Sunday the 3 moms drove up, in the pouring rain, to get the boys.  We stopped at a Bonefish Grill for lunch where I was pleasantly surprised by what they could fix me.  This was rice and lots of veggies with a tomato basil sauce.  6+ hours in the car in the rain didn’t do great things for me, though.

So from my crazy life to your, hopefully, calmer life.  I hope you are well.  I hope you feel strong and healthy.  And I look forward to getting back in touch more regularly.

So tell me, what have you been up to?  Is your life nuts right now too?  Have you ever dropped a laptop?  (Please.   Someone have done this!  LOL)

Not Sick Enough – Thoughts on an Auto-Immune Disorder

This post has been percolating in my brain since my last doctor’s appointment on 2/15.  Then I read My Take on RA Treatment and Decisions and my brain started moving more.  Today I read Kelly @ RA Warrior’s Post “Can We Treat The Whole Person or At Least The Whole Disease” and I decided it was time to finally finish getting my thoughts down.  This is mostly a vent; Where I don’t expect anyone else to fix it but I need to get it out.

When I was in my 20’s I had “an episode.”  There was a lot of pain involved and no one knew what was wrong.  There were tests run and no definitive diagnosis was made.  There were some bandied about but, basically, the doctor wanted me to be quiet and leave him alone.  He didn’t know what was wrong and there was nothing he could do for me was the general consensus. He implied it was all in my head.

So I quit my job and did something less stressful and felt ok enough to keep going.  When I got pregnant all those pains went away.  (I hesitate to say “When I got pregnant I felt great” as I had hyperemesis gravidarum with my pregnancies.  Fancy words for ‘throw up all the time.’  So I didn’t actually feel great.)  And the pain stayed away for close to 10 years.  I ran a marathon, slowly.

JENNIFER PITONIAK (F29) 6:33:48 1400 473 / 92 F25-30 6:31:36 WARR ACRES, OK

I worked at raising my kids and lived in 3 states.  And I felt good.

But a few years ago things started to hurt again.  And I realized that, honestly, my hands had pretty much always hurt but I had ignored it.  I started with my gp who very quickly told me that he had no idea, that it was out of his expertise, and sent me to a specialist.  It’s the same rheumatologist I continue to see and she is very very good.  But there are limitations.  In fact, I have had multiple diagnoses since beginning this journey but nothing definitive.  If you’ve read my About Me page you’ve seen my disclaimer that my diagnosis varies from appointment to appointment.  It’s probably RA, and when I started this blog that’s what they thought it was, but there is nothing official that says that anymore.  (I’ve got it written on some old documents but things keep changing.)  She sees me about every 3 months but sometimes more frequently.

I have to go over the Bay Bridge to get there

To get to her I have to drive between 2.5 and 3 hours in each direction which means I have to take a whole day off of work.  And often I hear the same thing

“Well, *pause*, your blood-work still looks great.”

Normally having great blood-work is, well, great.  But in this case it means my data doesn’t show what we want.  I don’t look sick enough.  I am sero-negative and, due to my treatment, do not appear very swollen.  But I still hurt.

I’ve switched jobs.  I’ve changed my diet.  I’ve reduced the stress in my life.  I’ve added in extra time to relax.  I’ve made sure I am getting 8+ hours of good sleep a night.

And still I hurt.  I “shuffle” around the house at night because my ankles hurt too much to bend.   I stopped wearing my wedding rings some time ago because my hands were too swollen.  While the swelling has gone down with the daily prednisone they still hurt too much to wear.

But without the definitive proof there isn’t a whole lot more we can do in the treatment department.

Now, my doctor does not think it is all in my head.  She is very supportive but she is also a realist.  And a realist knows that the insurance company will not pay for certain treatments without definitive proof which we don’t have.

I’m not sick enough.

I could go off my current treatment and see if I swell up substantially and/or develop some more obvious things we can target as visible clues.  But I’m functional right now.  I get up and go to work every morning as a special ed teacher and I am part of my family. I might not participate as much as I would like, but I am functional.  I’m worried about what would happen if I went off that treatment.

So I feel like I’m stuck.

At least she doesn’t think it’s all in my head.  But again, I’m not sick enough.

I look pretty good.  I’m not running any marathons but hey, not everyone does that anyway.  I look “normal” but I hurt pretty much all the time.  But yet we don’t quite know where to go from here.

There are side effects from medications and, like is said in the article on treatment, there has to be informed consent to choose these treatments.  I’m not saying I am desperate to go to the next level of meds.  I’m actually scared of it.  But I really don’t know where I go from here.

I guess I just keep doing what I’m doing.  But I wish there were more answers for people like me.  Yep.  Those who are not sick enough.

WIAW: Just another manic TUESDAY?

I’ve been out of the What I Ate Wednesday swing for some time now.  No that I haven’t tried to participate because I really have!  (And I’ve got the beginnings of multiple posts to prove it!)  But something always came up and kept me from doing it.  This week I was determined to join the party!

Monday the 16th was a holiday to celebrate Martin Luther King, Jr’s birthday.  I celebrated by being part of Dacia’s post “This is how we change the world”  and by celebrating my 10 year old’s birthday.  But by having Monday off from work it simply moved the manic craziness of Monday to Tuesday this week.

Before I tell you what I ate I need to fill you in on a little rheum thing.  Last week my rheumatologist changed up my med regime a tad, taking one away and adding another.  The new med has helped my pain tremendously (which is wonderful) but it has also pretty much taken away my appetite.  So I’ve had to begin working diligently to make sure I’m eating and eating healthfully.  Tuesday of this week actually allowed me to have a bit of an appetite which is good, but I was making conscious choices to eat.  So this might not seem like the way I’ve eaten in the past but it’s what worked for me this week.

Breakfast was a smoothie.  I took about a cup of cranberries, half an orange, 2 bananas, about 2 cups of blueberries, some rice milk, and some maple syrup and blended it well.  Then I poured out half for my daughter and then added a cup of spinach to mine.  Yum and instant!

I worked a half day and then came home for lunch and some housework before taking E to a doctor’s appointment.

On Monday, anticipating a crazy week, I cooked up a bunch of quinoa and sauteed some kale and mushrooms.  Then I mixed it all together and put it in single serving containers.  To this one I added some spaghetti sauce.  Instant lunch!

Afterwards I decided I wanted something sweet and so had a bowl of pineapple and passion fruit sorbet.  More yum.

The drive to E’s doctor’s appointment is over an hour in each direction.  On the way up I grabbed an apple to eat.

On the way back I had some pretzels but I didn’t get a shot of that!  When we got back to Salisbury Mark met us in town so I could give him E and go to a meeting.  When I got home I wasn’t hungry but felt like I should eat something.

A piece of peanut butter bread it is!  Actually, after eating it, I felt like I wanted something more so had a second piece.

All I drank was water.  All in all it wasn’t a bad day of food!