Tag Archives: Diet

Embarking on a new adventure

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And one I’m not terribly excited about nonetheless.

After much reading of books and blogs and much discussion with several friends who’ve made the leap, I am going gluten free, sugar free, and dairy free.   

Immediately.

I am waiting another month, for the good of all mankind, to go caffeine free.

I am in considerable grief about saying goodbye to my favorite food group- processed- and full of confusion as I dropped all the Cokes off at the communal office kitchenette.  I may have to go back in and, with a sharpie, write on all the  bottles “NOT FOR YOU AMANDA.”  And then, most tragically, I ended my quite lengthy relationship with the best, most dependable, tastiest men on the planet (except for you James Franco)- Ben & Jerry.  SOB.

There are several reasons why I’m making this switch- first, there have been studies showing significant improvements in RA patients who follow gluten free diets.  Since I’m not doing well right now, going gluten free definitely can’t make things worse.  So, why not? Second, if the phrase “you are what you eat” is really true, then I am a Chocolate-Caramel-Macchiato-Lean Cuisine-Calzone-Coke-Easy Cheese-Angel Hair Pasta-Bottle of Red Wine-Chicken Wing rather than an actual person. Third, I’ve always had food sensitivities and allergies.  I’m allergic to shellfish and avocadoes- allergic to the point that when I accidentally get these in my system, I immediately develop huge sexy Angelina lips that are so NOT sexy because they are accompanied by some pretty impressive wheezing and (wait for….wait for it) EAR SWELLING.  Let’s just say that I was the complete life of a Superbowl party one year without intending to be.  Cringe. I’m also lactose intolerant.  It would make sense to me that if 3 known foods lead to some very violent reactions in my body, it is possible that another type of food could lead to a less pronounced and immediate reaction.

I’m at the point where something’s got to give and I need to make sure I have all my bases covered.  This is something I’ve been considering for awhile and something that at this moment I feel like I can’t put off any longer.  I’m also dropping the last remnant of dairy in my life (cheeses) and eliminating sugar (at least in a refined form- I’m still eating natural sugars.)

So yes, back to the events of this week.

I have no idea what I’m doing.

My weekly trip to the grocery store yesterday took me over an hour.  I’m usually in and out in 15 minutes- I walk in, grab some oranges, and then head for the freezer section.  But yesterday, I walked in with a list and had to read the ingredients on all of the packaging before I put it in my cart.  I also switched grocery stores- from Harris Teeter to Trader Joe’s because TJ has a more extensive gluten free/ organic selection- so I had NO CLUE where anything was.

I am happy to report that I can eat corn tortillas and found gluten free refried beans and soy cheese.  That is my favorite meal, as disgusting as it sounds.  So, suffice it to say that I shall not starve although I am about as excited at the prospect of “soy cheese” as I usually am about dental work.

My immediate goal for now, besides that whole “I have no freaking clue how to cook thing” or that irritating “so I’ve read the book, now how do I really do it” is to find replacements for the things that I crave and/or eat frequently.  There’s just no way I’m going to succeed at this if I don’t.  And quickly!

To do this, I have emailed our local culinary school to see if they offer continuing ed classes that would help me to better understand what I can eat and how I can prepare it.  And maybe, just maybe, they can include a quick little seminar on Water: Tips For Boiling.  LOL.  

This could be interesting.

I feel like such a dirty hippie. :)

Does Trader Joe’s sell patchouli? 

Note: give me a day or so and I will have my reading materials posted for those who may be interested.  If you’d like to start where I started, do a Google search on “wheat gluten mechanism AND rheumatoid arthritis.”

Just a few thoughts on a Sunday

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This is random and scattered.  Just a warning!

-I got my bill for my joint aspiration last month on Friday.  All in all, total cost of aspiration was about $400, most of which was covered by my insurance.  That’s a miracle.  Especially since it was coded as “in office surgery.” If I’d known I was having “surgery,” I would’ve made some special requests.  Namely that awesome laughing gas I received when they took my wisdom teeth.  

- I went to church with friends this morning.  I’m a bit of a church snob because my grandfather is a Methodist minister.  Let’s just say that Granddad would be none too impressed that I went in jeans and flip flops.  I was kinda weirded out by that too but with how my feet feel lately, flip flops are amazing.  Anyway, the pastor was talking about financial freedom and about how he’s not trying to tell us what to purchase and what not to purchase but rather that we need to make decisions that give us freedom from debt.  So I was bored (I know, it’s wrong to say I was bored at church…but I was) and started thinking about if there are any choices I could make that would give me freedom from RA.  Not freedom by not having it (trying to be realistic here) but freedom by marginalizing it, by “putting Baby in the corner.”  

I realize that I need to make better choices about my health.  I live how I live until I flare and then I get all self righteously indignant on how “I had a salad last week dang-it and it sure did have  lot of veggies and I chose the LOW FAT dressing too because that is how terribly committed I am to my health.”  But come on Amanda: if you were as terribly committed to taking better care of yourself as you say you are when you’re flaring, you would’ve had that salad chock full of veggies more recently than last week!

I do realize there are other things that factor into flares but with this one, I am my own worst enemy.  I am very successful at making dietary changes….for about two weeks.

And before I turn people off by appearing to be anything close to deep or broading, I will tell you that I got the silly giggles during the last song (hymn? is it still called a hymn in a contemporary setting?) when everyone around me was swaying with eyes closed and hands in the air.  

-And finally, you know you’re taking Prednisone when you walk in to pay for your gas and find yourself lustfully eyeing everything “Little Debbie.”  OMG Zebra Cakes.

Date Night

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I bet that caught your attention.  No, not that kind of date.  I will forever remain coy on that subject when it comes to the trusty old Internet.  

But, I did have an all day date Saturday….with my immune system.  Actually, it was a three way date- I brought my joints along too.

Why?  Because I need my immune system to start putting out.  Or rather, if you want to get technical about it, stop putting out.  Or maybe it just needs to put out correctly?!?  Yes, that’s it.  I need to be in an exclusive relationship with my frigging immune system.  Right now, I feel like it’s whoring itself out all around town. So I don’t think that’s too much to ask.  Keep it in your pants, immune system.  GEEZ.

After sleeping in late, “we” got up and enjoyed my new specialty.  An egg white frittata with spinach, tomatoes, and feta cheese.  I was psyched- I’m trying to learn how to cook and I made it all by myself.  And people liked it.  AND NOBODY DIED.  Ok, so just me but still, it’s a start.

Then “we” went to get a massage.  I have a funny story for you here, which actually served as inspiration for calling this day of relaxation a “date.”  I’ve been going to the same place since July- generally going 3 times a month.  It is glorious.  So when I called to schedule my appointment, a new girl answered.  I asked for Saturday morning with the same person I always go to and said my name.  The appointment was confirmed and that was (I thought ) the end of the story. Until I get there Saturday morning.  The same new girl checked me in and handed me the clipboard of paperwork for new patients.  I looked at her, confused, and said “I’ve been going here for months- do I need to do new paperwork?”  She looked at me and said “No, that’s for (my last name).  I don’t think he’s been here before.”  It took a second for it to sink in what had happened.  I started to say “who the heck is….” when it hit me and I laughed so hard that I couldn’t breath.  Folks, she somehow took my first name and last name and booked me a couples massage based off of that.  

Niiiicccceeee.

So, the massage was fantastic (as usual) and next “we” went to the gym.  I showed the joints and the immune system who’s boss by doing 20 minutes of elliptical and then treated them to 15 minutes in the hot tub and 10 minutes in the steam room.  (May I add in here what an experience my gym is- a guy I know calls the men’s locker room at the same gym “the gauntlet” which I never understood until recently.  The reason he calls it the gauntlet holds true in the ladies locker room- everybody walks around naked. And not just “I’m changing my clothes and had nothing on for a split second” but full fledged strutting in birthday suits. WEIRD.) A fruit smoothie later (they called it organic with immune boosting additives but I’m doubtful) and “we” head back to my place to shower and clean up.  

Originally the plan was to end the date here because I had other plans with other folks but “we” were having so much fun that “we” decided to party well into the night together.  Ok, so my plans got shot to heck and I ended up curling up on the couch and watching movies.

It was lovely.

In other news, I finally got in with the rheumatologist.  I’m kinda frustrated.  Instead of presenting new options like I’d asked for , he increased dosages of methotrexate and Humira and told me to discontinue sulfasalazine. I go back in 3 weeks for an injection into the joint as well as a joint aspiration if this doesn’t help.  Can you feel my excitement???  In the confusing-shocking but only to me-not sure what to think of this news, my bloodwork came back (drumroll please) negative for RF.  Hmmmmm.  I’ve always been positive.  So I’m not sure what to think about being negative.  While I can find all sorts of articles explaining patients going from seronegative to seropositive, I cannot find anything on the reverse.  Which makes me feel like a freak of nature, yet again.  He shrugged it off like it was no big deal.  Actually, his exact words were “You still have it- your CCP is elevated and you have symptoms.”  But still….anyone else experience this?

Tolerating the fifth food group

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I’ve started seeing a nutritionist, a decision which I will outline in more detail for you in a later post that I don’t have time to write but you can probably imagine why.

One of the things she has suggested is using “medical food” to help my body recover after flares and, in the interim, until I can successfully kick my Starbucks and chicken wing lifestyle to the curb in favor of a more, ummmm, well balanced diet plan.  It is a specialized blend of all sorts of junk and is made to reduce inflammation.  I am committing to trying it for 6 weeks.

So, medical food is my new “fifth food group.”  It is about as glamourous as it sounds.  

A few things I have learned over the past few weeks:

-If it looks like chalk and feels like chalk and smells like chalk, it will most likely taste like chalk.

-If you try to overcome said chalk sensation by purchasing a “flavored” variety, it will taste like flavored chalk.

-Chalky substances are downright horrible in both milk and fruit juice.

-Trying to force yourself to savor and drink something you’ve already decided looks, smells, and tastes nasty is not an easy task.

-The easiest way to consume this crap plain is to pinch your nose and CHUG, CHUG, CHUG.  (Hmmm, as I write this, I wonder if I could funnel it….)

So, this weekend while snowed in, I was determined to find a way to make this bearable if not tolerable.  Mimosa in hand, I started throwing everything produce wise I have into the equation. Yes, this is what I did when my friends were out having fun. And finally, I think I have cracked the code.

I used:

- 1 blender

-Chocolate Soy Milk

-100% all natural unsweetened cranberry juice (I think this was the magic ingredient- the tartness breaks up the chalkiness)

-Blackberries (I also tried it with strawberries and blueberries together and actually liked this even more)

-A small handful of baby spinach (no worries- you can’t taste it.  IRON!)

-A tablespoon or so of fresh ground flax seeds.

- Medical food as directed (mine calls for 2 scoops)

Blenderize and you’re good to go!

And the finished product…..looks remarkably like a chocolate milkshake.

I don’t see restaurants picking it up and I doubt I will ever be invited to be a guest on Rachel Ray (especially if you know anything about my cooking habits or general lack thereof) but it has a sweet and sour tang to it that is 500% better than it was plain.

Hitting the proverbial wall

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This past week marked my 4th diagnosiversary.  January 11, 2006.  Woo hoo.  Did I plan any sort of celebratory event?  Um, no.  I do not celebrate things I’m not excited about.   I noted the date, rolled my eyes, and as best as I could tried to not think about it.  Unfortunately, my RA had different plans…

I’ve been fighting a low grade cold since before Thanksgiving.  I get almost better and then come in contact with someone who reinfects me.  It’s awesome.

I typically have “flares” when I’m either really stressed out or have any other sort of event that my immune system has to battle.  I swear, this RA thing is an absolute DIVA- if my immune system has to divert some of its forces to battle a cold, RA gets its panties in a wad and stages a mutiny.  This happens to me about twice a year.

I don’t have typical flares where all of a sudden my affected joints are completely swollen and locked.  Like I said, my flares are almost exclusively accompanied by a cold or flu. It’s more of a gradual thing and it’s more of a combination of different symptoms- I start to notice more swelling over a period of a few weeks that I can always find excuses for (overuse, increased exercise etc.), I usually start to experience minimal joint pain in joints that typically aren’t affected and then WHAM, my iron and potassium levels bite the big one.  The fallout from the drops in my iron and potassium are actually more incapacitating than the joint pain (now- this was not the case when I was newly diagnosed.)  This is usually followed by a dramatic increase in joint pain. Hence, hitting the proverbial wall.

Monday am, I awoke to increased swelling in my fingers despite having taken methotrexate on Sunday night.   That’s funny….but I’m on cold medicine so maybe it’s not working right.  I still figured nothing was amiss when Monday night I was in bed by 8:30pm.  I must’ve been tired- I don’t even remember falling asleep and I seriously feel like I was drugged.

It took me 45 minutes to get warm again after a client site visit on Tuesday.  I thought I bundled up enough.  Oh well, lunch will warm me up.  I seriously want the biggest rarest hamburger Cracker Barrel can give me.  And lots and lots of those salty steak fries! Those who are familiar with my eating habits would know that this is unusual.  

While driving on the highway back from my visit, I have to suddenly stop and take back roads because I’m so shaky.  I have this weird feeling that I am going to lose control of my car and slide sideways underneath a tractor trailer.  I’m never taking Mucinex again- makes me too jittery.

At a Tuesday evening dinner with my boss, I basically do not participate in any of the conversation because even though she’s talking to me about work, I can’t process any of the things she’s saying. I’m so tired.  All I want to do is go to bed.  This Mucinex and this cold have really knocked me out of whack.  And my feet are starting to hurt.  And my shoulder is sore right now too.  WTF!

On Wednesday morning, my coworker tells me that I look like I could be in Twilight.  Yay- I knew pale would finally come back in.  I know I’m sparkly like Edward.  When I finally looked in the mirror, I realize that I most certainly am NOT sparkly like Edward.  I have bags under my eyes and I’m gray.  I try to adjust my make up to hide this and end up looking like I’m wearing warpaint.  I decide to call it a day and go home and rest.  Afterall, this cold is kicking my ass.  My fingers really hurt, for some reason my left knee is bothering me, I’m bruised, I’m shaky, and I just can’t concentrate worth a damn.  I finally get my first thought that maybe it’s not just the cold at work here…

Wednesday evening, I leave my cave of a bedroom for a much needed haircut.  Hey, I am female- no cold gets in the way of beautification! LIGHTBULB!  EPIPHANY!  BREAKTHROUGH! When my hairdresser asks me what my favorite TV show is and even though I am concentrating intently on every word she’s saying, I DON’T UNDERSTAND THE QUESTION NOR DO I HAVE AN ANSWER.  I nod in agreement that I just love watching The Bachelor (oh, the horror).  To set the record straight, I do not love watching The Bachelor.  I the opposite of love watching The Bachelor. I would rather watch paint dry. Upside down.  Naked.  In Times Square.

All of a sudden, this whole experience is hauntingly familiar.  Extreme fatigue- check.  Bruising- check. Acting like a space cadet on crack. Extreme mental fogginess- check. Strange muscle pain- check.  Increased joint pain- check.  Joint pain in places that usually don’t bother me- check.  

Ohmygod- I’m having a flare.  And I’m anemic.  And I’m hypokalemic.  

When paying at the salon, they ask me if I want to schedule another visit.  I don’t understand a word that they’re saying but tell them ‘no, I have to go to the doctor.’  They stare at me and half-smile when they take my money and watch me walk out the door.  They think I’m crazy.

I locate my iron and potassium supplements I have stashed in my car. (I know, shouldn’t be kept in the car!)  I am able to get into the doctor the next day to verify that I am indeed super low on iron and potassium.  I am told to keep taking the supplements and come back next week for a recheck. Thursday night, I sleep soundly and awake Friday morning well rested yet not feeling drugged.  My joints still hurt though.

Over the weekend, I concentrated on resting.  The joints are still more swollen than normal but the knee has backed off.  The bruises are already fading, I can actually hold coherent conversations.  I still have a cold.

I need to restrategize to figure out a way to pinpoint this earlier.  I also need to figure out how to more consistently take my supplements.  That’s another post though.  Titled: You’re an adult dammit, remember to do this crap!

I’m feeling better.  More than a little bit.  And feeling extremely dumb!

Happy Diagnosiversary, RA.  You are one heck of a skank.

Massage Therapy and a breath of fresh air!

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I will admit it: I am addicted.  

It calms me, it soothes me, it relaxes the muscles of my back and neck which bother me, it stimulates an immune response which helps me manage my RA.  I crave time where I am forced to do nothing but chill.  And this takes the cake.

I’ve been to probably 10 different therapists over the years, most of them good, some of them atrocious.  A memorable one would be the guy who chuckled when he had me roll over and got a glimpse of boob.  And proceeded to stare.  Thank you, douchebag- because of you and how uncomfortable you made me, I now only go to female masseuses.  Have fun at the club tonight by yourself with your balding yet spiked hair and Ed Hardy shirt. I bet you like techno music and use cheesy pickup lines.  

I digress.

I found my current one by chance.  A coworker had a gift certificate that he wasn’t going to use.  “I don’t like being touched and I have a problem laying naked on a table in front of a stranger.”  To which I said “I do and I don’t.”  I called, made an appointment and by luck of the schedule, got this one.

Seriously, she is the best one ever.  Not because of her bodywork (which is great) but because of her interest in auto-immune disorders (family member with Webener’s who is on Prednisone and Methotrexate) and the fact that she’s currently studying naturopathic medicine.  

I admit, if you really think about it, that it’s a little weird meeting someone for the first time and five minutes later, you’re laying there with no clothes on.  Somewhat like a frat party?  (Sorry, Mom- totally kidding.)  It’s even a little more intimidating when you have to explain to them that “hey, I have this thing and these spots that if you aren’t careful, you could really hurt me.”  I’m accustomed to having to explain what and where every time I go to the same people.  I’m also very hesitant to let them touch the spots.  In fact, until this one, I’ve never let anyone touch my affected joints.

So, imagine my surprise on my second appointment when she asked to see my hands before we started.  She looked at them and gingerly touched them.  “Ok, you’re a little swollen today.  I just wanted to check before.  How are your feet?”  Wow.  I seriously think I hugged her.

It’s made a huge difference in how I feel.  I’m getting massages weekly like my doctor recommended for the first time ever with no fear of injury.  She is more in tune with my RA than my rheumy is.  She has picked up on the spots in my wrists that bother me sometimes, which I’ve never mentioned, and this week made me happy by saying “Your fingers really look much less swollen lately.”  I had noticed it too but hadn’t said anything to anyone because I thought it was just me being hopeful.

She’s given me advice on supplements-where to buy and brands to try, recommended a yoga teacher who can help me modify things when I need to, and is encouraging me to try acupuncture.  She’s familiar with my medications and is very empathetic on their side effects.  We talk about diet and foods that are by nature inflammatory.  

 I’ve had better conversations with her than I have with my doctors.  And in some cases, more well-informed conversations.  I really believe in treating the whole person, sometimes I feel that my doctors don’t.

I swear I had a point here.  I’m excited.  I’ve always wanted to approach my treatment as a partnership.  I only want people to understand where I’m coming from and where I want to go.  I want to get a massage as often as my budget allows.  I only want my goodies ogled in an appropriate venue. I want to have clinical conversations about my rheumatoid arthritis that don’t make me feel like crying.  And for now, I have that.

Get Ready for Invisible Illness Week: Beginning Sept 14th

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30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Rheumatoid Arthritis

2. I was diagnosed with it in the year: 2006

3. But I had symptoms since: May 2005

4. The biggest adjustment I’ve had to make is: slowing down, cutting back on physical activities.

5. Most people assume: that I’m being lame or lazy when I cancel plans or skip the gym. I’m not- it’s because I hurt.

6. The hardest part about mornings are: my body needs sleep. The mornings in flares where I haven’t had enough restorative sleep- waking up in pain doesn’t bode well for the day to come.

7. My favorite medical TV show is: Grey’s Anatomy. No RA reasons- McSteamy reasons.

8. A gadget I couldn’t live without is: my TENS machine.

9. The hardest part about nights are: getting comfortable during a flare.

10. Each day I take __ pills & vitamins. Right now, 3. At my worst, it’s been upwards of 11.

11. Regarding alternative treatments I: have tried a lot of them but unfortunately, my body responds best to traditional medication supplemented by alternative treatments.

12. If I had to choose between an invisible illness or visible I would choose: invisible all the way. Being in pain makes you feel very exposed- being able to hide that anything wrong is a comfort.

13. Regarding working and career: hard to balance sometimes but something I could never not do.

14. People would be surprised to know: I’ve learned a lot about myself through having RA.

15. The hardest thing to accept about my new reality has been: accepting that it’s forever. Forever is a very long time.

16. Something I never thought I could do with my illness that I did was: continue running. In 2007, I did 5 5K’s back to back! 

17. The commercials about my illness: generally tick me off. They’re generally off base in every way you can be off base. They feature older people playing tennis. Hello- twenty somethings get this too!

18. Something I really miss doing since I was diagnosed is: the ability to be completely spontaneous.  Not having to plan for rest or take medications with me.

19. It was really hard to have to give up: boot camp classes and high heels.

20. A new hobby I have taken up since my diagnosis is: um, blogging.

21. If I could have one day of feeling normal again I would: go wild.

22. My illness has taught me: not to sweat the small things. We all have struggles. Be sympathetic to everyone- you have no idea what they’re dealing with inside. 

23. Want to know a secret? One thing people say that gets under my skin is: “but you’re so young.”

24. But I love it when people: say “please tell me more.”

25. My favorite motto, scripture, quote that gets me through tough times is: “Pain is temporary, quitting lasts forever.” -Lance Armstrong.

26. When someone is diagnosed I’d like to tell them: it’s going to be ok.

27. Something that has surprised me about living with an illness is: there are ways to modify virtually everything to make it something you can do. 

28. The nicest thing someone did for me when I wasn’t feeling well was: bring my friends to me one time when I felt awful and couldn’t go out to see them. 

29. I’m involved with Invisible Illness Week because: it’s so important that people understand us!

30. The fact that you read this list makes me feel: cared for. I appreciate that you want to know more about something that affects me everyday.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com.

The post where I mention that sometimes I’m not the brightest crayon in the box.

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So it appears that this flare has been sponsored in part by…….(drumroll)………extraordinarily low levels of both potassium and iron!  With independent auditing provided by the phlebotomist at my doctor’s office! Major sponsorship provided by “Amanda’s an idiot who gets excited about needing less of the hard stuff and forgets to take standard supplements for months at a time.”  YEAH!

In my defense, I have disliked taking potassium supplements since a potassium overdose killed Rex on Desperate Housewives. 

Three days into renewed supplement taking, I feel tremendously better albeit still sore and swollen.  But the fatigue is not so bad.  In all honesty, it probably didn’t cause it….but it definitely didn’t help.  And I can actually tell now that I have probably been deficient for months now- the mental and emotional fog that I was blaming on the move….um, yes, three days into supplements is virtually gone.  And the bruises…..I have been black and blue since May.  Should’ve figured that part out too. Cringe inducing, isn’t it?

Feeling good…I think

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I’m afraid to say definitely because the past few months have been like being on a roller coaster with a stomach full of candy apples, corn dogs, and blue slushy.  Blllleeeeecccchhh.  Don’t you appreciate my visuals?

I like my job.  It’s nice to have a job where I don’t have to manage anyone, have measurable goals that don’t change by the hour, and don’t wonder on my drive in if I’m going to get there to find the doors chained shut. 

I love my condo.  It’s in an old neighborhood- very Gone With The Wind esque with gigantic gracious trees, old massive houses, and (what I’m most excited about) A PARK that I can walk to in less than 5 minutes that has free outdoor concerts several nights a week.  I do not love having to fit a 3 bedroom house into a 2 bedroom condo.  But I do love the $500 I’ve made on Craigslist in the past 2 weeks.

My RA is doing better.  I’ve spent the past few months feeling like I was getting ready to flare and then nothing would come of it.  And then feeling like I was getting ready to flare and then nothing would come of it.  Rinse and repeat. I still feel a little bit of it but not as badl.  I live next door to a friend from college who has celiac disease and she’s teaching me about gluten free diets.  I’m thinking about giving it a whirl but probably won’t.  This girl loves her carbs!  My friend is also super into yoga and I’m probably going to try that, if I can find a class that isn’t competitive.  The last class I went to felt that way so that’s why I haven’t gone back.

 I’m a little worried because my new health insurance doesn’t kick in until Sept 1st and I have exactly enough Humira to get through as long as I stick to bi-weekly.  Knock on wood please!

All in all, off to a good start.  I think.