Tuesday, May 21, 2013

there is a crack in everything. that's how the light gets in.

"'Hope' is the thing with feathers -
That perches in the soul -
And sings the tune without the words -
And never stops - at all -"

I have been feeling really good lately. Like, really good...about as good as I felt before I was diagnosed with RA, before Emily came along, before I took up running in 2008 and noticed some suspect swelling in my hands when I ran on particularly warm days. My joints have felt great, the bursitis in my left hip has been practically non-existent, and since I got trigger point injections, I've had hardly any muscle spasms in my neck and shoulders. If it weren't for the migraines, I wouldn't even feel like a sick person.

“Be faithful in small things because it is in them that your strength lies.”

I woke up on Sunday feeling like I had been hit by a truck. My body ached, literally, from my head to my toes. My quads were so weak and on fire that any time I wanted to get up, or even change positions, I had to use my arms to move my legs. I couldn't get out of bed without JW's assistance, and the range of motion in my left hip sucked so much that I limped around all day.

It was probably naive of me, but I wasn't really concerned about any of this. It made sense: I went running on Friday, for the first time in seven months, worked a busy shift at the restaurant, and then played on a team in a charity softball tournament the next day. Maybe the soreness was a bit excessive, but I figured I'd feel a lot better on Monday. Even my worst pulls and spasms are always better on Day 3.

“Life's under no obligation to give us what we expect.” 

Monday was still a little rough. I was walking pretty slowly and feeling pretty blah in general. On Tuesday my thighs burned as I walked down a couple flights of stairs in a parking garage.

I knew something was wrong when "that muscle" in my neck - the one that was tamed with trigger point injections - started to get an ache that I can only describe as being "yucky." (When one of my muscles or tendons gets particularly inflamed, I feel this gross, unsettling pain. It's almost like the pain you get when you have a cut that's become infected. I can't think of a better way to put it.) It traveled down my upper back in the space that runs between my left shoulder blade and spine, and settled in. Since my hip was still hurting, and laying on my back wasn't comfortable either, I ended up sleeping on my right side.

On Wednesday, I woke up with my right arm tucked up under my pillow. And I felt it.


Not myofascitis pain, or pain from bulging discs, or whatever the hell has been torturing me for the better part of a year. It was the type of pain that made me wince - not because it was particularly bad pain, but because there would be a split second where it got so much worse before it got better.

Today, my hip is screaming. My elbows and shoulders ache. My knuckles are puffy, their wrinkles ironed out at the first interphalangeal joints.

My first RA flare in months.

“She wasn't bitter. She was sad, though. But it was a hopeful kind of sad. The kind of sad that just takes time. ”

I would be lying if I said I was caught by surprise. I knew it was coming. In the back of my mind, I knew. But I'm still sad, still disappointed. Who wouldn't be, honestly? For the first time in years, I didn't feel like someone who had RA. For weeks. If you're chronically ill, or have been, you can surely understand what it feels like to be ever-conscious of it. To have that go away, even for a day, is huge.

"We must accept finite disappointment, but never lose infinite hope."

I could feel defeated, and I did feel defeated; at least at first I did. I went without any significant RA symptoms for a prolonged period, and they came back. No matter how many times they go away, they will always come back, because I have a disease that has no cure. It's hard not to feel defeated once you start thinking about it...and then I thought about it more.

I went without any significant RA symptoms. For a prolonged period.

Without DMARDs. Without biologics. I didn't even need pain medication.

I think it's obvious what the silver lining is here.

Sunday, April 28, 2013

you may have an amazing doctor if...

...you can speak and not only are you heard, you are listened to.

...you are spoken to and treated like an equally capable, competent, and crucial component of your medical care.

...you feel like a crazy person when you express your anxiety, and you receive reassurance that confirms you are a little crazy, but in a perfectly normal way.

...when you mention that you haven't taken your meds in two months, the response doesn't make you feel like you are being judged...

...but in that same response, the purpose and importance of these medications is reiterated, without it turning into a lecture.

...your concern over the recurrence of side effects is met with understanding, and a promise that your overall well-being is tantamount to any conventional loyalty to a particular drug or pharmaceutical company.

...you can see that every patient is treated like a priority.

...you leave the appointment feeling optimistic, regardless of whatever news you've received.

Monday, April 22, 2013

this much concentration may make my head explode

I had a post all planned out (well, loosely outlined in my head) about my rheumatology visit today and I was really looking forward to it. I was going to gush about how Dr. Awesome is pretty damn near being my favorite health care professional of all time, next to the labor & delivery nurse who got her other patient covered to ensure that I got the drug-free birth I wanted. I don't even remember her name, but I'll never forget how she spent the last hour - which was the majority of Emily's labor - coaching me through it. (I still can't decide if it would be classified as precipitous labor since I had not only contracted uselessly for weeks beforehand, but also had the occasional painless contraction once my water broke in the wee hours of the morning...since labor didn't start until six hours after that, and then lasted about an hour and forty-five minutes, I think I can claim it. For the record, it was pure insanity. IN-SAN-I-TY.) Without her I think I would have completely fallen apart...for real.

Then the migraine that's been torturing me like a schoolyard bully became worse again. It keeps teasing me, backing off and lingering right around the corner before jumping up and punching me in the face.

So not only is it exacerbated by the eye strain that comes with sitting in front of a screen and scanning back and forth as I read, but I'm also in a perco-fog after finally yielding to its half-hearted promises of respite from the pain. It took an entire episode of The West Wing to muddle my way through that first paragraph.

(For the record, I'm not writing this in an attempt to garner sympathy; we all have our issues to deal with, whether they're physically painful, mentally taxing, emotionally draining...or not that affecting at all. To put it simply, if I don't get mine out and try to at least lighten them up a little, I won't be able to focus on anything else.)

I was sadly excited to write all about why Dr. Awesome is so awesome, but it'll have to wait another day.

I've been laying pretty low on my alcohol consumption and drinking a literal gallon of water every day in the hopes of discouraging the migraine from beating the hell out of my brain, but since, as one of my chronically awesome friends put it...

...I'm just going to indulge anyway. Can't let them take away everything that I look forward to.

Sunday, April 7, 2013

why I (unceremoniously) fired Dr. Rheumy

This is a long post, but it's also a long story, so I'm going to tell it in its entirety. I've got painsomnia/medsomnia tonight, so I might as well be thorough if I'm going to be laying here awake regardless!

Back in the spring of 2012, my feet started falling asleep. The numbness began at the metatarsal region and sent pins and needles through my toes. This had been happening for years during exercise, when I would go running in shoes that weren't quite right (too small for my size 11's, too narrow for my twisted toes, not built for over-pronation, etc.), which was annoying enough. I became concerned when it started happening for no discernible reason and with no obvious pattern. I had also begun to have some mild burning and muscle weakness in my right ring and pinky fingers. I've read articles from some pretty reputable sources - Hopkins Arthritis, for starters - that people with RA can experience peripheral neuropathy, so I brought it up to Dr. Rheumy.

He immediately dismissed it as something that isn't related to RA and had no interest in trying to get to the bottom of it. If I recall correctly, I think I brought it up on three separate visits, and got the same reaction each time. It was Dr. Primary who referred me to a neurologist, who ran a nerve conduction study and attributed it to - you guessed it - my RA.

Around that same time I woke up one morning, sat up in bed, and immediately went back down, in searing pain. Some muscle, somewhere in my neck or shoulder, had seized up and left me in a perma-shrug. It was so bad that I had to call my husband, who had just left for work, and ask him to turn around and come home. Dr. Primary's office didn't open until the afternoon that day and so I went to an urgent care office instead. The doctor there said I had a muscle sprain and prescribed Flexeril, a muscle relaxer. I went to Dr. Primary the next day because the Flexeril had turned me into a zombie, so he prescribed Skelaxin instead, which is milder and doesn't leave me stuck in an all-day nap.

I had also been having neck pain and was concerned about the possibility of cervical spine disease activity, so on my next visit to Dr. Rheumy, I brought it up to him. Once again, he dismissed my concerns and told me that RA doesn't affect the spine, even though it's another well-documented extra-articular manifestation of the disease.

I decided I was done with Dr. Rheumy when I needed to reschedule a routine visit with him that April. I had to bring Susannah to the dentist for an emergent visit and the next available appointment with the pedodontist was at the same time as my appointment with Dr. Rheumy. I called his office and was told that there were no available appointments until July - two months later!  It had already been two months since my last visit, and waiting until July was out of the question, especially since I had been flaring. I researched rheumatologists on Vitals.com and Healthgrades.com and booked an appointment with a very positively-reviewed doctor in my area.

My first appointment Dr. Awesome happened to coincide with the next major episode of muscle spasm in my neck. I knew I liked him immediately when he didn't rush me in and out, even though the office was packed. He sat and spoke with me about my medical history, my symptoms, and my treatment plan for a half hour. (!!!) When I told him about the neck pain, I didn't even have to ask whether he thought it was related to my RA. He was right on top of things and sent me right over to their radiology tech for some x-rays. (I love that they have x-ray, labs, AND an infusion center on-site!) Those of you who have chronic conditions know how hard it can be to convince a doctor to order even simple diagnostic testing, especially on the initial visit. It was like I had walked into a spoonie's dream!

Dr. Awesome saw that my cervical spine was so tortured by muscle spasm that not only was it straight (it should curve toward the front of the neck), it was actually starting to curve in the wrong direction. He also saw what looked like potential rheumatological activity at the odontoid process. I left that appointment with a script for Skelaxin every 8 hours for one month, to relax my neck, and an order for an MRI.
Thankfully, especially considering atlanto-axial instability can cause serious neurological damage, and even death, the MRI showed no issues in that part of my cervical spine. The downside was that it did show two bulging discs impinging on the thecal sac, which is the membrane that surrounds the spinal cord. I was in a minor car accident back in college, and that's the only event I can think of that would have led to cervical disc disease.

Needless to say, it was a relief to find a rheumatologist who does not dismiss my concerns. Dr. Rheumy didn't even do regular joint examinations beyond taking a quick look at my fingers! I didn't realize that a full joint exam should be done at every rheumatology appointment until I started seeing Dr. Awesome and then read up on the subject on Google and some of my favorite blogs.

Even if I bring up an issue that is unlikely to be related to RA, Dr. Awesome does his best to get to the bottom of it by either running labs or recommending that I see another doctor in whatever sub-specialty is most relevant. A recent example was this past fall, when I had multiple episodes of sudden weakness in my thighs and upper arms without any exertion. I hadn't seen the neurologist in months and when I brought it up to Dr. Awesome - who seemed genuinely worried - he asked me to book an appointment as soon as I could get in. The neurologist wasn't all that helpful; his opinion was that it was, "either stress or an autoimmune neuromuscular disease," and he referred me to Dr. Irish, the neurologist who shares an office with him.

I still haven't found a resolution or definitive diagnosis for the neurological issues I've been having, but I have a working diagnosis of Myofascial Pain Syndrome for the muscular symptoms, and an order for an MRI of my lumbar spine to investigate some painful spasms I've been having in my feet. I've also had the joyful experience of going from a few random ocular headaches this past fall to what he's now calling chronic migraines...I'd go into more detail but this post is already long enough!

If I hadn't "fired" Dr. Rheumy, I probably would have just kept taking Skelaxin and hoping the pain would go away on its own. I wouldn't have gone back to the neurologist, wouldn't have found my way to Dr. Irish, I would be miserable with pain and I would still be convinced that I had something terrible like a brain tumor. (Seriously, I was near tears every time a migraine came on, convinced that I was dying.) I'm still in pain, but at least we're trying different things to relieve it, like trigger point injections and prophylactic migraine treatment. Dr. Irish has also recommended seeing a chiropractor and Dr. Awesome suggested acupuncture, and gave me a script for medical massage therapy.

I've been saying this since I struggled with recurrent miscarriage back before Susannah was born: if you are unhappy with a doctor, or just feel like they're not really listening to you, then do not be afraid to try someone else. You are paying your physician for a service, and if they aren't performing that service satisfactorily, it is your right as a patient to seek alternative care! Find recommendations from friends or family, look through websites like Healthgrades and Vitals, try Angie's List, or ask a trusted medical professional - your kids' pediatrician, your dentist, etc. - who they would recommend. There is no reason to waste your time and cause yourself unnecessary stress because you feel obligated to continue scheduling visits with the doctor you've been seeing. If you went to the salon and got a bad haircut, brought your car to a lousy mechanic, etc., you certainly wouldn't go again, right? Right.

Thursday, March 21, 2013

return from hiatus

Is a hiatus still considered to be a hiatus if it's lasted for 17 months? As I pondered that earlier, I remembered that Family Guy was off the air for nearly 18 months before it came back, better than ever. Then again, it was canceled and then revived, it wasn't just halted for a half a season. Obviously nobody's "canceled" my blog or forced me to stop posting; I've just become so busy with life that I've lost all motivation to write about it.

A friend of mine - who blogs for an Irish e-magazine and actually gets paid to write about her life - told me one night recently that she had read through my blog, and thought I was a decent writer. The idea has been pushing its way into my thoughts when I read blog posts from others, and particularly when I feel the need to blather on about my various ailments without shoving it in everybody's faces on Twitter and Facebook. Living a chronically ill life is isolating at times, and although there's a great community of chronically awesome people on Twitter, I don't think it's necessary to bombard them with every last detail.

Writing this blog gives me the satisfaction of a one-sided phone conversation without the guilt.

In other words, I'm back, just like Family Guy. (Let's pretend it just came back now rather than 8 years ago.) Not necessarily better than ever, but I'm back nonetheless.

Here is an update from my last post, in bullets this time:

  • I didn't get into nursing school. I did take some more prereqs, but that's where I left it. I'm okay with this right now. Gives me room to explore other options.
  • I did run that 5K distance! In fact, I ran in a timed 5K last May, and did it in 32:33.
  • I have been on and off Enbrel for 18 months. I've taken a week or two off here and there for various mild illnesses, 4 weeks off this past summer due to an antibiotic-resistant jaw infection (3 antibiotics and no improvement until urgent oral surgery to remove the offending cyst), 6 weeks off in December and January while I fought some upper respiratory infections, and a self-imposed break because I've been getting facial rashes that could have been related to drug-induced lupus. (They don't seem to be, at least I haven't heard back regarding my latest bloodwork.) I haven't been on MTX since mid-December and I haven't decided if I want to go back to it.
  • I found a new rheumatologist after being seriously dissatisfied with my old one, but that's a different post for a different day.
  • Susannah is 6.5 now. Emily is almost 4. The party we threw for Susannah's 5th birthday turned out well; Emily is still not fully potty-trained. Funny how certain things go by so quickly, and others seem to drag on forever.

In a nutshell, some things are the same, many things have changed.

Oh, and it was snowing on the second day of spring. Bizarre.