Rambling stream of consciousness…

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Brought to you by my current cold, the exhaustion that accompanies it, and a good strong dose of off brand Mucinex. *taken as directed, just to be clear*

I’m on day 4ish of the sinus and bronchial follies i.e. I’ve gotten over the whole trying to figure out who gave this to me and plotting terrible  passive aggressive things I can do to them.  I’m now in the ‘this isn’t so bad even though I feel pretty crummy’ phase.

Weird? 

Colds used to really freak me out when I was newer to the RA game.  I knew my meds suppressed my immune system and immediately imagined that I’d end up in the hospital.  I’d end up at the doctor on Day 2 saying do something! And I think the anxiety I had made it so much worse.

I honestly don’t know that changed.     There was no ah ha moment, but at some point, I realized that colds are comforting to me. 

They make sense.  I know why I’m tired.  I know why my head hurts.  I know why I can’t smell anything and why my ears are crackly.  And those symptoms respond favorably when I treat them. Bonus: I never have any joint pain when my body is busy attacking something other than itself.

Sure, I still treat it aggressively.  Hot steamy showers, neti pot, hot teas and soup…you name it, I do it.

But it’s so nice, just every once in awhile, to crawl into bed in comfy clothes at 8:30, slather on your vapor rub, and know that you’ll feel better in the morning.

Running?

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Oh my long forsaken blog…I’m almost embarrassed to post as of late.  I’ve had a lot going on,both personally and professionally, all positive but I’ve lost sight of updating you on a regular basis.

Truth be told, I’ve lost sight of many things in my busyness.  My professional life is organized to the minute but my time outside of that is basically feral.  Insert pictures of wild animals.

I have lots to tell you…about life, about RA, about travels, about #Jointdecisions and the ACR meeting last month.  And I feel unworthy of reporting on any of those things because of my lack of consistency.

So here’s what I’m doing…I’m working to apply the same principles that make me successful at work to my blogging activities.  Give me a few days…still hammering out the details…but I still have a lot to say. I’m just tryon for the first time ever to put some structure around it. Please feel free to tell me what you want me to write about!

On a different note, the weirdest thing happened to me last night. I got home around 5:30, it was dark, but it was warm.  The pre RA in me said lets go running!!! The RA in me said no.  

I sat there for a few minutes and assessed my bodily answer to that.  And the answer was an overwhelming ‘try it!’  I double checked with my poor injured left ankle that has had 2 cortisone injections…and it was surprisingly onboard.

I thought and thought about it and remembered hearing another blog (holla Brit) saying not to focus on distance but to focus on one step after the other.

I ran for 15 minutes.  Sure, I was a sweaty, hacking mess but this morning, my bad ankle was fine.  And I was proud of myself.

It’s been awhile since I’ve been proud of what my body can do.

I hope to tell you more stories like that, along with all of the funny things I try that may or may not work.

Love and hugs!

Doctor/patient relationship questions

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So, if you’ve been reading for awhile, you know that I’m involved with several organizations.

I’m working on something with #jointdecisions right now and would love your feedback regarding your doctor/patient relationship.  More details to come soon! But please give me some feedback on the below questions!
Whah has worked for you in building a relationship with your rheum, feeling confident that you made the right choice in switching and also how you sustain and grow that relationship with your rheum over time?

Show me your teeth!

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I’ve always had pretty good teeth.  <knock on wood.> The picture above is from last May…where at the age of 35, I finally got my first cavity.

The amusement I had over numb, crazy mouth selfies definitely made up for my laughing gas request being denied. 

While I may not post as often as I should, I am constantly reading other blogs and various health publications.  In some ways, it’s a great thing.  I learn so much! In other ways, it is a terrible terrible thing because I self diagnose with the worst case scenario, work myself up into a tizzy, and in at least this most recent case, avoid getting something looked at for awhile because ***if the doctor doesn’t say it’s an issue, then it is not yet real. ***

Because, you know, good logic.  So rational.  

So what happened?

I’ve read a lot about the relationship between RA and dental issues.  Instead of trying to explain the technicalities, know that there seems to be a pretty strong relationship and follow the below links that are actually scholarly or at the very least peer reviewed.

http://www.joponline.org/doi/abs/10.1902/jop.2001.72.6.779

http://www.everydayhealth.com/rheumatoid-arthritis/important-dental-tips-for-ra-patients-5837.aspx

So…a few months ago, I noticed that my upper left gums were swollen.  I thought nothing of it…as this happened once before and when I went to the dentist, I was diagnosed with eating pizza that was too hot.  

Seriously.  The dentist laughed and said ‘honey, you must have been starving. Let your food cool down some!’

I let it go because I figured I had simply burnt myself again.  It went away after a few days.  And then it came back.  Away. Back. Away. Back.  

On round 3, I finally took a good look in my mouth with a mirror and FREAKED out.  Part of my left gum had receded and was ‘clefted.’

I immediately thought to my reading.  I also thought of my friend who recently had a gum graft that she best described as ‘agony.’

I stupidly thought to myself that I should just avoid it.  I didn’t want to admit that RA was wreaking havoc on a new place.  I certainly didn’t want to have a painful procedure.  And if it doesn’t hurt, then why address it?

I know. The stupid stings!

Fast forward to this past Tuesday.  I bit funny into a carrot and lost a filling in the other side of my mouth.  There was no way I could not address that, so off to the dentist I went.

Not only were they able to fix the tooth, they were able to squeeze in a cleaning as well as examine the gum recession.

The verdict: my gun recession is NOT RA related.  It is very much the result of aggressive brushing with stiff bristles and not helped by nighttime teeth grinding.  

I can’t control or make excuses for the grinding but I stand by rough brushing: this gal likes to be clean!

While I probably won’t have the gum ‘un-recess,’ the remaining tissue is thick and healthy. No need to refer to a periodontist at this time and certainly no need for a gum graft. Switching to a soft bristle toothbrush, being less forceful with brushing, and wearing an oh-so-sexy mouth guard at night should keep it from progressing. 

Moral here? There are several.

1. Don’t assume that RA causes everything.

2. Don’t put off something that should be looked at because you’re afraid of the answer.

3. Dental care is very important, especially for RA patients.

4. I realized that I haven’t seen many articles or blogs discussing RA dental care.  

5. Even though my issues wound up not being RA related, this is yet another aspect of the patient experience we should at least be aware of.

To maintain continued gum health as well as to address some tartar issues, my dentist has recommended a periodontal cleaning where they numb you up and clean below the gum line.  This would mean that all future cleanings would be a bit different read: more invasive and more expensive.

I’m considering it as it’s nice to feel proactive for once about health vs reactive.

What do you think? Anyone else have experience with this type of cleaning? I’d love to hear your experiences!

A day in the life…

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It’s been awhile since I documented this so here we go!

6:30am- Alarm #1 goes off. BAM, SLAP. Alarm #1 is silenced.  I roll over and pretend that it didn’t happen.

6:39- Alarm #1 snooze feature activates. I sit up long enough to slap it off the nightstand, lean over, pick it up and turn it off.

6:45- Alarm #2 (cell phone) goes off.  This one is easy.  I only have to roll over and tap it off.

7am- Alarm #3 (the TV) turns on.  The intro to the Today Show filters through the room.  But honestly, I don’t even budge because half the time, I don’t even hear it.

7:15- Alarm #2 snooze function activates.  Again, cell phone so tap off.

7:16- I don’t even have to open my eyes to feel the step, step, step, step, CAT IN MY FACE.  This wakes me up. Because I would never smack, slap or tap the furchild.

7:16-7:20- petting a purring cat, checking email, wishing I could spend the whole day in bed with her.

7:20- Get out of bed, stretch, assess how I’m feeling.  Today, not so bad. Wrists are a little sore but it could be worse.  

7:20-7:50- Dry and flat iron hair.  Wash face. Brush teeth. Contacts. Makeup. Jewelry.  Daily battle to find something in your closet that you feel confidant in.  This sometimes results in half naked trips downstairs to the laundry room.

7:50- Final assessment in mirror.  Stop in bathroom, take morning meds that you put on the counter the previous night.  Put back in bin because this is the only way you can remember that you have indeed taken them. 

7:50-8am- Make breakfast shake and coffee.  Feed cat.  Chug shake.  Chug coffee.  Make more coffee for travel mug. Pull precooked Tupperware for lunch- today is stir fried cabbage.  Grab a package of almonds, an orange and precut celery (by me, I’m cheap, not bought this way) for snacks.

8-8:30am: drive to work.

8:30-12pm- work! I try to schedule myself in 30 increments for both time management purposes as well as making time to get up, walk around, and stretch.

12pm- LUNCH.  Except…I don’t want my cabbage stir fry anymore because I want to take a walk.  Walk to deli, order chicken salad on mixed greens, walk back.  Leave cabbage in fridge for lunch tomorrow. Pat self on back for time savings on that move!

1pm- 5pm- work! Again, scheduling myself in 30 minute increments.  

4:45pm- receive text from friends re happy hour plans.  My best laid plans for gym/yoga are immediately jettisoned. 

5:15- 7pm- hang with friends. (Sometimes I drive home first and walk to where we are meeting.  Depends on where we meet, how I’m feeling and if the temperature is ungodly.)

7pm- 9pm- home/dinner/home practice yoga or free weights or walk or piyo.

9pm- shower, feed cat.  Take evening meds and put morning meds on counter so that they are not forgotten. Stretch if I haven’t done yoga. 

9pm-I fall asleep- fave part of day! Get in bed with furchild, Netflix.

Rinse, repeat.

Living with RA= so wild and so glamorous!

Nutrition: cleaning up the taco salad

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So I don’t want to post just to write a post…and for the most part, I’m doing well.  But I also don’t want to not post.

So would you rather see cat pictures???

  

Or hear about some of the dumb things I’ve done that my rheumy would probably cringe at…

Or perhaps my space is best used by sharing some of the things that make a big difference in my personal health?

Option 1 is totally adorable.  Option 2 is…well…what it is.  Note for my rheumy: my sliding buddy in the video is an ER doctor = I was *totally* supervised.  Option 3 is probably what you want to hear about most though. 
Not that I intend to stop with the cat pics nor do I intend to stop playing in bounce house/water slides meant for children. 

For me, one of the things most crucial in maintaining my health is eating correctly. The downfall is that so many of the foods I like are so bad!  

I’m very sensitive to a variety of foods and, as I’ve mentioned before, worked with a nutritionist to identify and eliminate them.  Tops of my list are salt, processed sugars, soy, gluten, and dairy. 

So how do you still eat your faves and avoid these things? I have been trying to clean up my favorite dishes, one step at a time.

On the menu today, taco salad.

I make all my meals for the week on Sunday’s and freeze the ones for the latter part of the week.

It doesn’t take as long as you would think.

This morning, I got up, made a cup of coffee and threw 2 lbs of chicken in the crockpot with a jar of tomatillo salsa.  (Sugar free). Low for 9 hrs.  When it’s done, I’ll shred it.  I’ll put some on salads. The rest I’ll eat by itself because the flavor is that good. 

I chopped 2 green peppers and 1 onion. I browned a pound of lean ground beef and added the peppers and onions.  

While the peppers and onions cooked, I chopped three zucchini. I put them on a baking sheet, sprayed them with olive oil, a teeny tiny bit of sea salt and popped them in the oven. 20 minutes at 400.

Note: this is how I drizzle olive oil.  It’s easier for my hands and wrists to hold as well as not dump a flood of olive oil.  Available from the travel section in almost every store for roughly $1.

  
Once the zucchini was in the oven, the onions and peppers were cooked.  I added 1 can of Rotel and 1/3 cup of water.  I also added 2 tablespoons of ‘Organic Mexican Seasoning’ that I got at Whole Foods.  It’s salt free and probably pretty easy to make on your own…but it’s Sunday and I’m lazy!

Here are the ingredients:

  
I mixed everything together and covered it to cook for 10 minutes.

Instead of chips, I serve it on a bed of spinach or kale.  I topped it with some fresh cilantro from my porch.

  
I made cup of coffee #2….oh, I need to not lie.  Do over: I made cup of coffee #3 and stuffed my face!

When I was done, the zucchini were too.

  
I roast all my vegetables this way. Asparagus, brussel sprouts, artichokes, you name it. 

Later today, I’ll spend probably 5 minutes shredding the chicken.  I also have fresh spinach that I steam as a side for variety.  If I get tired of the entrees, I always have chicken sausage on hand.

All in all, I spent 45 minutes in the kitchen, most of it waiting on stuff to finish and indulging my coffee addiction.  Outside of assembling and heating meals for the rest of the week, I won’t cook again until next Sunday. 

Now…cup of coffee #4 and hopefully a good walk if it cools off some!

Note: I was not compensated for or asked directly or indirectly  to mention any of the products above. 

Shots, shots, shots

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Yes, the wild child in me is singing that god awful rap song right now.  It is awful…but dang it is catchy!

Anyways, one of the questions I am asked the most is how in the world can you give yourself shots???

Some back story: I grew up terrified of shots.  I had to get a tetanus shot right before I went to college and I *may* have slightly panicked about it.  At 18, almost 19 years old.

My sophomore year of college, I wound up requiring allergy shots.  I learned that if you are miserable enough, shots are no biggie.  I did the allergy testing, reacted to everything, and scheduled what they termed ‘Rush immunotherapy’ to jumpstart getting myself better.

Rush immunotherapy required me to be at the doctors office for 8 full hrs.  I knew I would be receiving a shot every half hour for the full day, but didn’t realize the other things they would do.  I got there that morning and the first thing they did was start an IV in my left hand.  I asked what it was for- it was in case I went into full anaphylaxis and my heart stopped beating.  They inserted the IV and capped it off…and the whole day I kept staring at it, hoping it would never be used.  

It was not used, but I totally used it to get bumped to the head of the cashier line I n the hospital cafeteria because they all assumed I was there for chemo.

(Going to hell.)

Anyways, I did 5 years of weekly allergy shots.  

You would’ve thought that would’ve desensitized me to getting/giving shots but when I was put on Humira after being diagnosed, I waited a month to give myself that first shot.  

It wasn’t a real shot persay- it was a preloaded epipen type shot.  But it intimidated the hell out of me.  

One of my good friends found this out and organized my ‘give a shot, take a shot’ intervention.  Simply put, she showed up with a bottle of coconut rum that I like, and wouldn’t allow me to partake until I gave myself that first shot.

It ended up being perfect and hilarious.  She knows me well and knew I needed humor to get through it so she called the whole event like a wrestling match.

‘And AJ is unsheathing her secret weapon from its plastic casing.  The ref verified that it is not expired and therefore eligible to used to beat the bloody hell out of her opponent.  AJ is out of her corner but look at her opponent cowering. Look at her technique as she expertly jams her weapon into her enemy and presses that button. BAM- opponent is down for 1…2…3…4…5….And we have a victor with AJ!!!!’

For real. It happened. 

I have awesome friends. My A team always knows what I need.

The first time is always the hardest.  And my buddy made it so funny that I just didn’t care.  The shot of rum I took after was my prize.

Pretty sure doctors everywhere are cringing.

Anyways. So I did several years of Humira shots.  Then I moved onto Orencia infusions.  I switched to Orencia injections simply because it was easier on my schedule.

The Orencia injections were my first experience with a non epipen injection.  They were preloaded…I just had to do the stick.

The first one I did, I had to do with the nurse at my doctors office to show I knew how to do it.  I’d never done that before and I think I scared her at first.

I was all Pulp Fiction- holding it 3 feet above my leg and preparing to ram it.  I learned that day that for subq shots, you hold it gently on the surface of your skin.  You hold it like a pen, and gently insert it at a 45 degree angle.

Subq shots are boring.  I wanted to go all John Travolta on it! Complete with music.  But whatever.

Because I’m asked so frequently what it’s like, I made a quick video showing me giving myself my weekly vitamin B injection.

This is a supplement  I take and I find the injectable version is better quality for me than pills.  This is an intramuscular injection- 90 degrees rather than 45.  This is one that I also have to draw up myself, another new skill I have.  Certainly, the most difficult injection I have to give myself.

And guess what? It’s not difficult.  So for any of you who may be nervous about injectable medication, this is the hardest type of injection to do…and its simple, fast, and not painful.