This is Just Ridiculous

Well, my running and office life have once again been sidelined by my health. For the fourth time since getting my wisdom teeth out in June, I’m sitting at home, swollen, bored, exhausted, and on antibiotics and pain meds (oh, and off my RA drugs to let the antibiotics do their job).

The first time was being swollen for about a month after getting the teeth removed. The second two times were when blood started collecting in my right jaw – a hematoma or blood tumor. That happened twice, people! Each time involved making an incision in my gumline/inner cheek under local anesthesia, draining the blood, undergoing antibiotics, and giving it time and rest to make sure it healed.

I’ve been totally fine and hematoma/jaw swelling free for five blissful weeks.

Then, this last weekend I had subtle, sporadic pain in my left ear. I was busy having a blast at a wedding, so I ignored it. Sunday night, I had some pain in my lower left jaw. I noted it, but went to bed.

Then, Monday morning I woke up to one half chipmunk cheek. Whhhhhhyyyyyyy?????

If only I were this cute.

Of course, the oral surgeon who I had been doing follow up care with was out of the office Monday, so I went to a new dentist who ruled out a tooth infection and put me on antibiotics.

I spoke to my marvelous rheumatology nurse at least four times, trying to determine if it could be related to Rheumatoid Arthritis. The short answer is, yes, it could, but it probably isn’t.

So Tuesday I went back to my oral surgeon. He ruled out a hematoma or an infection, but numbed me up, sliced in, drained the area, “smoothed” the bone, and added a “drain” in my gumline to prevent fluid from building in my jaw again. Fun stuff, let me tell you. Apparently, he believes my body was reacting to a stray bone fragment left over from getting my wisdom teeth removed. Great, so could this happen spontaneously for years??

Since Tuesday, I’ve been taking my antibiotics, managing the pain with Percocet and IBProfen, and WAITING for the swelling to go down so I can look and feel like myself again. I’m still waiting.

I’m going in to see my oral surgeon tomorrow to hopefully get the drain out and get more answers. In the meantime, cabin fever is setting in because I’m supposed to be relaxing. Though good for blog posts (as in, I actually find myself writing them), this is pretty bad for sanity. :/

I’d like to ask you RAers if anyone has experienced lower jaw swelling related to their RA? What was it like and how was it treated? 

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Invisible Illness Week

Alright, officially Invisible Illness Week was Sept 9-15th, but better late than never, right?

1. The illness I live with is: Rheumatoid Arthritis
2. I was diagnosed with it in the year: 2012
3. But I had symptoms since: probably 2010
4. The biggest adjustment I’ve had to make is: listening to my body and taking it easy when I’m in pain or fatigued.
5. Most people assume: they know what Rheumatoid Arthritis is, but they’re usually thinking of Osteoarthritis.
6. The hardest part about mornings are: I move a little slower than I used to. AND remembering to take my vitamins.
7. My favorite medical TV show is: Scrubs
8. A gadget I couldn’t live without is: Oxo Good Grips kitchen tools and my grip jar opener
9. The hardest part about nights are: when fatigue equals a busy mind and insomnia, not sleep.
10. Each day I take 6 -14 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: will try anything. Personally, yoga, acupuncture and changing my diet (no gluten, less dairy and sugar, more veggies) help a lot. If I could afford it, I would get massages more often.
12. If I had to choose between an invisible illness or visible I would choose: I’m a private person, so probably invisible.
13. Regarding working and career: I’ve kept my career, but I’ve embraced (and have been blessed with an office that embraces) a flexible schedule. This lets me start my mornings slower or work from home when I need to.
14. People would be surprised to know: how bad my symptoms were before I went to the doctor. I was really good at the “grin and bear it” denial technique.
15. The hardest thing to accept about my new reality has been: that this disease is chronic. When I was diagnosed I thought I would be the exception to the rule and go into remission within the year. This hasn’t been the case.
16. Something I never thought I could do with my illness that I did was: RUN a marathon.
17. The commercials about my illness: feature older people golfing and make me roll my eyes.
18. Something I really miss doing since I was diagnosed is: going out for a night drinking with my friends. This is a double no for me because the drugs I take (methotrexate) are hard on your liver and I try to be kinder to my body these days.
19. It was really hard to have to give up: alcohol (see above) and high heels. I still indulge in both on occasion.
20. A new hobby I have taken up since my diagnosis is: blogging!
21. If I could have one day of feeling normal again I would: go-go-go ALL day long – run, climb, dance, party. I’d wear high heels. I’d stay up all night. I wouldn’t even give a passing thought to “paying for it” the next day or even week.
22. My illness has taught me: I’m stronger than I think and everyone is going through something, so be patient and kind with yourself and others.
23. Want to know a secret? One thing people say that gets under my skin is: “But you’re too young to have arthritis!” If this were true, I wouldn’t have it and hearing this just makes me feel ashamed and misunderstood.
24. But I love it when people: ask me sincere questions and want to know more about RA.
25. My favorite motto, scripture, quote that gets me through tough times is: I have two I come back to: “Never, never, never give up.” – Winston Churchill; and “So it goes.” – Kurt Vonnegut
26. When someone is diagnosed I’d like to tell them: It’s tough, it’s scary, it sucks. It will get better. You will feel better than you do today.
27. Something that has surprised me about living with an illness is: the supportive community of people I’ve met (mainly through online support groups).
28. The nicest thing someone did for me when I wasn’t feeling well was: just let me cry and then ordered me Chinese food in bed and hung out all day, watching funny TV shows.
29. I’m involved with Invisible Illness Week because: I think awareness of invisible illnesses is important to funding research and finding cures.
30. The fact that you read this list makes me feel: honored and vulnerable

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NYTimes: The Value of Suffering

NYTimes: The Value of Suffering
http://nyti.ms/1cSE92W

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Biomedical Implant to Treat RA

Bio-electronic implant to control RA

Biomedical Implant to Treat RA

SetPoint Medical is working on an alternative treatment for Rheumatoid Arthritis: a small device implanted in your neck that sends out electrical patterns to regulate your immune system. Definitely something to watch.

Check out yet another article on this new treatment.

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Bills, Bills, Bills….

World gonna be so cruel to you, world gonna be so mean. I’ll catch you when you’re fallin’ through. I’m gonna throw on you, like a trampoline.

That song made me feel better today, so I wanted to share it.

I got back from an awesome, but non-budgeted vacation only to be greeted by an unexpected $600 medical bill. Yippee!

After rounds of phone calls with nurses, insurance agents and billing people, I found out that the reason for the bill is because my in-network specialists billed insurance as “outpatient hospital visit” rather than “in office visit.”

The problem is that my in-network specialist rate of a $50 copay apparently only applies under certain codes. And this particular hospital didn’t know the magic words. That leaves it as being charged against my deductible, a way higher amount. My insurance claimed they can’t do anything about (United Healthcare BTW).

So, I went back to billing at the hospital, who told me that it was state law that they bill it that way. I called bullshit – the other rheumatologist that I see also has an office in a hospital, and I’ve never been charged more than my copay (they’re in the same state, in case you’re wondering). Billing claimed there was nothing they could do except offer me a payment plan.

So that leaves me hounding the nurses to resubmit the bills. I feel bad about this. Nurses already have a million things on their plate, but should I really be penalized $600 because they chose to use one code over another, equally applicable code? I haven’t heard back from them yet.

The whole mess is frustrating. I went to this doctor because they were in-network. I triple checked the UHC website to make sure of it, so that I wouldn’t be charged out-of-network rates.

A system that requires you to jump through hoops, call and clarify every little visit, procedure and test before it’s done, speak to insurance about which codes to use, and then hound nurses to make sure they’re filing bills under the codes that work for your particular insurance policy is broken. And bureaucratic BS.

Now don’t get me wrong, I’m not ungrateful. My insurance allows me to be on medication for less than $500 per year, when it would otherwise be costing me about $32,000 per year (Enbrel and methotrexate), and therefore is something I couldn’t live without. But that doesn’t mean the system’s not rife with inexplicable inconsistencies, nonsensical loopholes and traps, and a whole lot of incomprehensible coding and rules.

I don’t have answers for you, I only know Obamacare won’t solve it. Do you have advice or insurance horror stories? I’d love to hear them!

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Have I Mentioned How Much I Hate Quinoa?

Image courtesy momskitchenhandbook.com

Yes, that’s right. Quinoa. The miracle superfood. The gluten free wonder. The spotlight food of the moment. IT MAKES ME SICK.

I used to eat quinoa all the time. And this is before I was gluten free. I just thought it was a tastier option to rice. And healthy.

Then, one fateful dinner about four years ago, my boyfriend and I made quinoa. About twenty minutes later we were both writhing around the floor of our living room in complete gut-wrenching agony.

I’ve experimented with quinoa since then, both on accident and on purpose, all with the same result.

The latest experiment happened last night. I made a really nice dinner for my boyfriend and me.

Last night’s menu:

My take on the “African Delight” salad from Happy Herbivore Abroad: line a large pot with water and coconut oil, heat and add sweet or red onions with a bit of berbere spice (a mix of cayenne, paprika, fenugreek, cardamom, coriander, cumin, nutmeg, ginger, cinnamon, allspice, turmeric, and cloves), cook onions until translucent, add yams or sweet potatoes and cook until soft, add fresh ginger and kale and set to simmer.

Zucchini and summer squash fresh from the garden, cooked in olive oil with sweet onion, parsley and basil. Served over gluten free pasta with parmasean.

Paired with yummy white wine from Sicily.

Anyway, I digress. Dinner was good up until the sudden urge to puke my guts out. My boyfriend wasn’t feeling the effects yet, so we went through every spice, wondering what I was sensitive to. Finally we looked at the pasta box. There in the ingredient list was the culprit: quinoa.

My bf started feeling the effects about twenty minutes later and we both spent the next four hours in agony, trying to distract ourselves with Archer, The Daily Show, and The Colbert Report.

I’m feeling better today, but am going to be much, much more diligent about checking the ingredient list!

More on quinoa sensitivity: http://sopranointherealworld.blogspot.com/2011/12/quinoa-psa-and-seven-foods-you-should.html

Has anyone else developed a quinoa sensitivity?

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A Shoe Story

shoesshoes3

This one may be for the ladies, but I think you’ll understand when I say that shoes can be so much more than shoes. They reflect your style, they help define us to the world, and they can change how you walk, strut, and feel about yourself. So where does that leave you when you can’t wear the shoes you want? When you’re stuck with shoes that don’t reflect who you are?

Alright, the shoe story actually starts with my wisdom teeth extraction. I got my wisdom teeth – all four, all impacted – removed back in mid-June. To say healing didn’t go smoothly is to put it lightly.

First off, the initial swelling lasted about two weeks before going down (with one mild dry socket). When it finally did go down, I was ecstatic. The only problem was that the left side of my chin was still pins and needles numb, which is uncomfortable and distracting. Of course, there’s apparently not a whole lot they can do about numbness except wait.

With the swelling down, I jumped back into working out because I’d made a goal to do a sprint triathlon (.5 mile swim, 12-17 mile bike, 3-4 mile run) by the end of the summer, and I was woefully out of shape.

Then fast forward to right before the Fourth of July and suddenly the right side of my jaw was in a lot of pain again. I went to visit my dentist, who at this point was pretty sick of me. He told me to wait it out.

Finally my jaw was so painful and swollen that I made an appointment to see my dentist and a new oral surgeon in the same day. My dentist again told me to wait. So I went to the oral surgeon, who told me that the extraction was so complex, my dentist should have referred me out and never should have attempted it in office. He also said the X-rays that my dentist had been working off of were abysmal.

Well, great. Of course I felt like an idiot, because I had a similar incident with an impacted tooth in high school. My dentist at the time thought that he could do a procedure to reveal and attach a brace to an impacted tooth. Mid-procedure, he leaves me sitting in the dentist chair, awake and bloody with a mouth full on cotton. Turns out he can’t do it, so they cart me away to an oral surgeon to knock me out and finish the operation. I may just have shit luck with dentists.

I ended up switching my care to the oral surgeon, if only because my dentist and I were getting pretty tired of my frequent visits.

Anywho, the new guy was worried my jaw had been fractured during surgery, which turned out to not be the case. He sent me away saying that probably my muscle ligaments had been severed and were having difficulty reattaching because the bone they had been attached to was no longer there. So I went on my less-than-merry way, being told again to just be patient.

But then it got even worse, so I went back to the oral surgeon (bless his soul, aside from the initial consolation fee and the cost of new, more sufficient X-rays, he hasn’t charged me a dime). The OS decided to do a biopsy of my jaw and found out that I had a blood tumor (super gross word meaning that blood has been collecting in my jaw where it shouldn’t have been – also called a hematoma). So… That was really f#*king gross. He had to poke me in a bunch of places inside my cheek with large needles and drain the blood. He also found and extracted two bone spurs, pieces of bone that didn’t get removed during surgery and were trying to work their way out of my jaw. My OS put me on five days of antibiotics.

And here’s where the shoes come in: to cheer myself up, I went shopping. I found myself the cutest shoes and bought them despite not really being able to wear heels because of my RA and their uncomfortably high price. At any rate, in the store I convinced myself that I could wear heels if I wanted.

Maybe heels are a state of mind? Like if they’re cute enough, and well-made (read expensive and Italian), I could wear them. Right? They made me feel feminine and pretty, and I really needed to feel that.

Wrong. Every time I went to wear them, my feet were more swollen than they’d been in the store and it was a blow to my ego. Each time I decided sore feet on top of a swollen jaw wouldn’t make me feel better, but not being able to wear the shoes I wanted to was making me feel worse.

After that I was STILL in pain and swollen, but I guess it was more because of all the needle pokes. A couple days post operation I started getting better and I was seriously soooooooo happy. I danced around my living room beaming.

I went back to some lighter workouts, thinking that maybe I still had a chance at a triathlon in August.

Then, a week later, wham. I found myself back at the oral surgeon’s office, getting a new hematoma drained from my right jaw. Painful, time-consuming grossness. This meant another couple days of recovery and another seven days of antibiotics. Which also meant another week of not taking my RA drugs since fighting infection and restricting your immune system don’t exactly go hand in hand.

It’s been a week and a half of not going anywhere near the gym or my running shoes, trying to keep my blood pressure low, sleeping on my left side only, and trying to keep my head elevated. I’m happy to report that, today, I feel mostly fine and look normal. Yay!

As for the shoes, they met a not-so-happy end. Yesterday, I made the heart-breaking choice to return them, unworn. In the end, I decided that no shoes were better than having pretty shoes mock me from inside my closet. Begging me to choose fashion over comfort.

More than giving up my shoe dream, I had to give up my goal of doing a sprint triathlon this summer. All of these teeth complications have just made it too hard to train. Making the call to choose to give my body a break and room to heal has been hard.

Giving up on goals and dreams is not usually my style. But there’s two ways to look at it: defeat or wisdom. I’m trying to go with wisdom. (Hey, if I can’t feel pretty, at least I can feel smart!)

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My way less sexy, but pragmatic shoes.

 

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Q&A on RA

Q&A on RA

A very interesting Q&A with rheumatologist Dr. Vivian P. Bykerk. Definitely worth a read.

Also check out Part 2 and Part 3.

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Swell, I’m Swollen

This is basically what I look like right now. 😉

You would think that someone with RA would know a thing or two about swelling. Swollen joints pretty much comes with the territory. Well, I got my wisdom teeth out on Friday and now, four days later, I can tell you that I still had a lot to learn about swelling.

First off, for all you autoimmune warriors, the logistics of getting your wisdom teeth out are a little more complex than for the average person. My rheumy had me stop all my RA drugs (methotrexate and Enbrel) one week before surgery to limit the chance of infection. Since RA drugs inhibit your immune system, it can lead to slower healing.

I was due to take my methotrexate again post-surgery on Monday, but due to extreme swelling, I decided not to.

At first, the thought of being off my RA drugs scared the crap out of me. What if I have a flare?? It turns out, your body takes awhile to catch up, so you’re usually OK for a couple weeks off your drugs. That being said, I’m going to start Enbrel back up tomorrow, even though I’m not fully healed.

I had to get four impacted (two severely impacted) wisdom teeth removed and the whole thing took a whopping 3.5 hours. Of which, they apparently had trouble keeping me “asleep”. (I blame my red hair.) Apparently I kept waking up and saying “Ow”.

Luckily I remember only one such occasion. I woke up and said, “What’s going on?” or something like that. They told me they were on the last molar and knocked me out again.

Well, the additive effect of 3.5 hours on three different anesthetics meant I spent all of Friday night throwing up and Saturday completely nauseous.

I thought the worst was over, but Saturday night, my face swelled up like a balloon. Silver lining? I now have photographic incentive to stay in shape. 😉

Now my face is still painfully swollen and I am forever grateful that RA does not (normally) effect your jaw.

When I was a kid, my sister used to make fun of my oxygen/prednisone “chipmunk cheeks”. Now I once again get the honor of that nickname. */Joy!*

If anyone has advice to hasten recovery and get the swelling down, I’d love to hear it!!

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Fringe Binge

If I’ve dropped off the planet recently, avoiding writing blog posts, seeing friends, and even doing work, I have a perfectly wretched excuse: I’ve been binge-watching the TV show Fringe.

From early April until last night at 1:30 a.m., I watched FIVE seasons (in my defense, the last season is only 13 episodes!) like it was my job. I believe in one record day I watched eight episodes… That’s just embarrassing.

I’m sure at least some of you understand, if the articles coming out about increased binge TV watching are correct. In fact, with so many on-demand services, binge watching has become the behavior that many studios and writers are catering toward. You’re now far more likely to see a serial show whose story grows on itself episode after episode, than a Law & Order style show where each episode stands alone. It means better stories, but it also means more addictive TV.

I guess the important question here is why we – or in this case, I, as I can only speak for myself – binge watch.

I have to admit, it’s been a very long time since I’ve watched so much TV or been so involved in a show, truly caring what happened to the characters. I think the why for me was my own sort of perfect storm.

After getting back from Europe, I was more achy and fatigued. Having more RA symptoms is a very isolating experience. It means I don’t feel like saying ‘yes’ to social plans. It means a lot of nights on the couch, bonding with my cat. (My cat loves a good TV binge because I sit on the couch waving around cat toys and he works out for both of us…) It means I’m more likely to be irritable and I just feel like a bummer to be around, so I don’t want to be around anybody.

I also was a bit down from the general let down of coming back to “real” life after a really great vacation. Wait, why do we have to work? Why can’t we just perpetually travel? At the same time, many of my good girlfriend’s have been busy with big life changes of their own. Meanwhile my boyfriend’s been dealing with a lot of personal/family/homeowner stuff and I’ve felt (rightfully or not) our relationship slipping as consequence.

All of these things led to a perfect storm. Of loneliness.

And what’s one perfectly understandable, but totally unhealthy answer to loneliness? Make friends with the people in your Netflix queue!

I will say, it’s not all bad. If anyone is looking for a kick-ass lead female who makes you want to be brave and strong in your own life, look no further than Fringe’s Olivia Dunham. Also, some of the sci-fi in that show may just fuel my next novel. It may, if I’m lucky, even feed more creative ideas at work.

Those are the positives. There are plenty or negatives of my TV binge, which means I truly can’t recommend it as a cure for anything except maybe recovering from surgery. My carefully planned healthy diet went downhill. I’ve had more tortilla chips than smoothies/juices lately. Eating while watching TV is a really bad brainless activity. Perhaps most importantly, it’s only allowed me to feel even more disconnected from the people in my life.  (The title of this post should be ‘Never TV Binge Alone!’)

Anyway, this morning, after reaching and being totally satisfied by the season five finale of Fringe, I feel like I’ve been released from a prison of my own design. I feel like I’ve been given the gift of getting my life back.

No new shows are on my horizon (it’s like when you finish a really good book and are hesitant to pick up another, because you fear it won’t compare), just saying ‘yes’ to a social life and beginning to enjoy my summer.

And, to summarize with my new found anti-journaling skills:

Went on a Fringe binge,

I feared I wouldn’t come back

Given second chance

– or how ’bout this? –

Anti-matter and

parallel universes,

Life should be that cool.

😉

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