all we need is just a little patience

This seems to be the underlying theme to my life right now.  I thought it would best be summed up in bullets, to avoid rambling, but I ended up with big blocks of painful-to-get-through text. (Kind of a shame, cause I like making lists, shocking as that may be to those who know me well.  I may be disorganized, but it's an orderly sort of chaos.  Or something like that.)

In no particular order, here are all the things that I'm white-knuckled over - for the immediate future, at least.

I submitted an application to a nursing school; more specifically, a one-year program for people who have a bachelor's degree in another field.  The deadline was October 17th (I submitted it on the 11th, go me!) but I don't expect to hear back until around Christmas or so.  Some days I think that I have a good shot at getting in, others I think there's no way they'll take me.  Mostly, I obsess about it regardless of how good or bad my feelings are regarding my chances of being accepted.

I've been having excruciating pain in my shins and calves after I run.  As soon as I start, I can feel some pain, and then it just gets more and more intense until I feel like I'm plodding along while someone wails on my legs with a crowbar or seven.  Post-run stretches are like torture sessions.  I am still trying to get to that 5K distance (my team was bumped from the triathlon, much to my relief) and I'm going about it in a smart way, by trying to increase my distance by 10% per week.  I can't get past 2.15 miles or so because I keep having to take breaks over multiple days in order to let my legs feel better.  On top of that, life is too busy for me to be able to even get out there to give it a try.

I started Enbrel injections three weeks ago today.  Dr. Rheumy told me that it can take a few weeks to see results, but he seems optimistic that it will help (as per our conversation mentioned in this post, where he advised me to go off MTX) so I have been trying to remain optimistic.  So far, no difference whatsoever.  I have not discontinued MTX because everything I've read says that biologics work better when paired with it.

After reading many stories from other Enbrel patients, it sounds like there's no rhyme or reason to who responds to it, who doesn't, and how long it takes.  Some people feel a difference in their symptoms within a day or two, some feel a significant difference by the three month mark, and it is not "clinically effective" for about a third of RA patients who take it.

I don't know how long Dr. Rheumy wants me to be on it before we decide if it's working, and what criteria he will use to make that decision.  Will it be a reduction in my RF and/or anti-CCP levels, relief from the symptoms I have, or both?  I want to know as soon as I can if it would be better to move on to another biologic and see if it works better for me, but, again, this isn't something I will have an answer to until around Christmas.

I had to skip this week's Enbrel dose because I'm coming down with some sort of cold or upper respiratory virus.  (I stupidly told myself it was a "chest cold," which of course guaranteed that I would feel like my head is filled with cotton by this evening.)  I called Dr. Rheumy's office today to ask if I could take it this week, and he wants me to skip it until I feel better.  So that's one more week of waiting to see if it actually works for me; one more week before I can try something else.  I know a week doesn't sound like a long time, but I want to be able to sleep without being woken up by hip pain, I want to sit in any position I feel like without having painful stiffening of my ankles and knees, I want to be able to do things like type on a computer and knit without my knuckles feeling like they're on fire!

I want, I want, I want, and I want it now!!!  (I would stomp my feet, but I'll be feeling it in my ankles all night if I do that.

Susannah's 5th birthday party is in a week and a half, and so far I've only heard from 4 out of 24 parents of kids who were invited.  Only one of those is a yes.  Trivial, maybe, but I need a head count by Tuesday and I want her to have a decent turnout.  Ten kids (the minimum that I need to pay for) would be ideal - less money for me to spend - but what if we only get 3 in the end?  So we wait for those phone calls.

I am trying to get Emily out of diapers and onto the potty.  Enough said.

So...see why Axl Rose's voice is running through my head tonight?

the good, the bad, the ugly, and the uncertain

The good: I decided to take up running again, and it went really well at the start. Within a few runs, I was able to run 2 miles without stopping, and was averaging over a mile of running each time.  My short-term goal is a little over 5K distance, and my long-term goal for a year from now is The Great Cow Harbor 10K.  I'm supposed to be running 5.3K (3.3mi) in a relay team for the Town of Huntington Sprint Triathlon, and that was looking really promising this time last month.

The bad: Between TS Irene, shin splints, and Susannah starting kindergarten, I haven't run in almost 3 weeks.  The triathlon is 12 days away.  I was proud of myself for going 2 miles without stopping, but on the flip side, I've hardly run 2 miles without stopping...that was before the hiatus!  I'm afraid I've really set myself back now.

The ugly: My left knee decided to revolt last night, and unlike my typical RA joint pain that tends to be better by the morning (or, should I say, after my joints loosen up), it is still swollen.  I've iced it, rested it, elevated it and had it in a compression sleeve all day.  Still puffy, still sore.  So I'm thinking that I've actually hurt it and that it's not just RA pain.

The uncertain: I thought for sure at first that I would be able to throw up my swollen middle fingers at RA and say, "Fuck you, my lower body is strong enough that I'm going to run 15 miles a week, and it's gonna be awesome!!!"  Now I'm thinking that I'll have to very humbly apologize to my body for being so reckless.

Oh, and just for an added bonus, my inner upper gumline, my hard palate, and the back of my lower gums are like a big minefield of sores.  You would think that this would at least help me lose a little weight since eating is so painful, but no luck there - I've got eating more than covered!  I've been stuffing my face with soft things like bread and pasta since I feel like I'm going to vom if I don't.  Yeah!!!

Dr. Rheumy told me at my appointment two weeks ago that I could quit the MTX, since I've officially "failed" the treatment (I'm not noticing a difference in my symptoms this time around) and should be starting Enbrel soon anyway.  I'm too scared to discontinue for good.  Now I'm not so sure why...surely untreated RA isn't as bad as unresponsive RA coupled with unrelenting nausea and what seems strangely akin to leprosy in my mouth.  (Sorry to anyone out there suffering from leprosy - though at least there is a cure for it that the WHO will provide free of cost.  I wish there were a free, readily available cure for autoimmune disease!)

Why am I torturing myself again?  I can at least answer that question: because of that pesky little thing called hope.  Deep down, under my pragmatic cover, I am a hopeless dreamer.  Maybe - just maybe - the MTX will suddenly start to do something.  I've only been back on it for 8 weeks...maybe it is just taking my body a little longer than usual to respond to it.

methotrexate and folic acid supplementation

I have been back on methotrexate for about 5 weeks now since my appointment with Dr. Rheumy last month, save for a week that I skipped because I was working 11 days in a row and wasn't sure how I would be able to do so in the MTX fog.  During both periods of time when I discontinued my therapy, I had all but forgotten what the nausea and fatigue are like, until I started it up again.  For me, the side effects are comparable to the nausea and fatigue of early pregnancy; I have heard of some patients who have little to no side effects, and others who are stricken with full-on vomiting, or who spend the better part of the day following their dose in bed, or both.  I also get mouth sores, occasional lower-GI side effects, and have noticed that my hair sheds like crazy.

This time, in an effort to reduce my side effects, I decided to a) become more consistent in taking my folic acid and b) try an alternative to just taking Folgard, which contains 800mcg of folic acid, in addition to B-6 and B-12.  This Medscape article has a brief explanation about folic acid supplementation in patients on low-dose methotrexate therapy, defined as less than 20mg/week.  I personally take 15mg/week: low-dose in relation to the doses used in cancer patients, but a moderate dose for an RA patient.  As far as I know, the higher end of the range for RA patients is 20mg/week.

I am not very good about taking my vitamins and supplements every day, so my folic acid supplementation basically consisted of taking a Folgard whenever I actually remembered that I should.  Some doctors and researchers advocate taking a higher weekly dose of folic acid (5mg or more), rather than a lower daily dose (usually around 1mg).  There is an article in Rheumatology (The British Society for Rheumatology's official journal) that recommends 5mg of folic acid the morning after MTX is taken.

After coming across this article (and actually, it was J.W. who came across it, not me), I decided to get myself one of those daily pill boxes and change things up a bit.  I've been taking Folgard every morning except for Tuesday, then my MTX on Monday night, and 5mg of folic acid Tuesday morning.  I didn't realize how beautifully this dosing schedule was working for me until I didn't refill my MTX in time to take it this past Monday.  Instead, I picked it up on Tuesday morning, took it before lunch, and waited to take the 5mg of folic acid until this morning.

The larger dose of folic acid hasn't been eliminating the side effects completely, but they have been more like a brief annoyance - a little nausea that is cleared up by some ginger ale or hard candy, a bit of fatigue that prompts me to have an afternoon cup of coffee if I have to work that night.  The lower GI side effects are few and far between and my mouth sores haven't been as bad, though I'm still shedding like a dog.  From just going the extra 12 hours between when I would normally take my folic acid (in relation to my MTX dose) and when I actually took it this week, I have be given a harsh reminder of what the MTX side effects are normally like for me.

I was feeling okay around lunchtime, when I ate some chicken tikka masala that was left over from our lunch at Whole Foods yesterday.  A couple of hours later, the nausea kicked in, and now my stomach is turning at the mere thought of Indian food.  I spent the late afternoon/early evening hours curled up on the couch, dozing on and off while the kids piled blankets, pillows, and stuffed animals on top of me.  The only other thing I could fathom eating was either a grilled cheese sandwich or broccoli and cheddar soup from Panera; I opted for the latter with some sourdough and while it was good as I was eating it, now I feel sick again.

I don't think I will ever mess with when I take my folic acid again - my conclusion is that I need to take the 5mg right around the 12 hour mark after I take my MTX, for it to kick in quickly enough to minimize my side effects.

If there are other RA patients out there reading, do you supplement with folic acid when you are on MTX therapy?  If not, how are your side effects?  If so, what is your dosing schedule?  Have you noticed whether it makes a difference in how you feel?

On another note, I haven't started Enbrel yet.  I was told by the university where I'm taking my prereqs for nursing school that there is only one MMR vaccine on my immunization record, and NY State requires two if you were born after 1957.  I'm pretty sure that I have had two, considering I went through 13 years of school without it ever being an issue, but until I sign a form to get my medical records out of storage and show that I did have both shots, I need to treat things as if I am going to have to get an MMR vaccine soon.  Since biologics can greatly impair the immune system and the MMR is a live vaccine, I can't get it while on Enbrel and can't start Enbrel until 6 weeks after I've been vaxed.

I'm really hoping the Enbrel doesn't bring on a whole new slew of side effects to deal with.

take me back

I spent about 10 minutes laying on my left side, with my arm under my head, and my legs curled up.  My left hip is on fire and my shoulder is so weak and stiff that I can hardly stand to bring my arm up from my side.  It is starting to radiate pain down my arm through to my elbow, and spread across the left side of my upper back.

I tried to grab the roll of toilet paper in the bathroom, and it was too hard to use my left arm, so I had to keep it lamely at my side while I reached with my right arm.  I came back to the living room and told J.W. what had happened.

After that, I cried.  Just for a minute.  Quietly, so he didn't hear, even though he was sitting right next to me.  I think if I tried to talk about it to him I wouldn't have been able to stop.

I don't remember what it's like to be able to just get up and move around without stiffness.  To bend down and pick up something off the floor without having to grab something for support on the way back up.  To lay down on the couch any which way I want without having to think it through beforehand.

murphy's law

The kids and I have been pretty active since Susannah finished up preschool and the summer officially began.  Lots of trips to the beach, even if just for an hour or two, some time spent at the playground, a trip to the mini zoo and a little swimming in the pool at my mom's.  My body has been behaving while we're out and about, even though I've had quite a few painful flares pop up in the evenings.  Overall, I haven't had too many complaints.

We have been taking it easy the past couple of days, which was supposed to give me some quality knitting time.  I actually finished up my first project in a couple of months last week, a Posy tank for Emily using Knit One Crochet Too 2nd Time Cotton in Avocado.  I decided to frog (that's unravel, for you non-knitters) a sweater I had started last year for my mom, since it was shaping up to be more fitting for me, and start over in a smaller size.  I figured I would at least be back to where I joined the neckline by the busy work weekend, which starts tonight, since I had all this free time on my hands and no plans to do anything more than take the girls to swimming this morning.

Of course, my right hand decided to swell every night this week.  Normally that wouldn't stop me, but I was actually getting a little clumsy with my needles, so I didn't want to compromise the finished product.  My left hand and both wrists are acting up too, something that doesn't happen nearly as often as the swelling in my right hand.

Now I am about to get ready for the start of a 6-shift weekend at work.  I work in a restaurant, so there's plenty of walking around to be had, and quite a bit of standing still, which is much worse for my hips and knees than the walking.  Aside from a flare last Wednesday night where my right knee painfully puffed up, the joints in my lower body have been feeling pretty normal recently.  Another "of course" - my left hip and knee have been on fire on and off today and I've been getting some lovely nerve pain all the way down to my ankle.

Murphy's Law is just plain evil.

today was a good day

My rheumatologist is usually booked 6-8 weeks out, so when I finally called a couple of weeks ago to schedule an appointment, the earliest I could get in was August 10th.  (He only sees patients on Wednesdays at this particular location, which definitely accounts for the wait.)  I don't know why I had never thought of this before, but I called this morning to ask about cancellations, and gave the receptionist my number.  I figured I would just call every Wednesday up until the day of the appointment to see if I could get in, but I happened to get in today.  Sweet!

I had to bring the kids with me, and they were incredibly good for the two hours we were there - including the five minutes I had to leave them under the watch of the receptionist at x-ray, since they couldn't come in there with me.  I had my appointment with Dr. Rheumy, a TB test, labs, and x-rays of my hands and wrists.  The new med plan is to continue my 15mg/week of methotrexate, then inject Enbrel 1x/week (pending the normal TB test, of course, since tuberculosis is one of the several serious infections a person on biologics is susceptible to), while adding in 1mg/day of folic acid and a prednisone burst/taper for the next 10 days.  I told him that Dr. Primary (did I mention I found a PCP?!) wanted to prescribe Prilosec so I could reduce the wear and tear on my stomach from Aleve, and he told me he had a coupon for a new drug (called Vimovo) that is a combination of 500mg naproxen and 20mg Nexium.  I'm sure in the long run, generic Prilosec and naproxen will save money, but the first time filling the Vimovo is free with the discount card, so I figure it can't hurt to try.  Then he sent me for a CBC, ESR, CRP, RF, CCP, and hepatic profile, just to see how things look compared to this time last year, when I was diagnosed.  (I was supposed to have the hepatic profile and CBC done every 6-8 weeks on the MTX...this is the first time it's being run since last July.  Whoops.)

All that boring med talk aside, I feel pretty relieved that I've got this appointment over and done with and that Dr. Rheumy didn't hesitate to move on to biologics.  I don't think another 8 week trial of MTX would have really done much other than confirm that while it seems to work to a degree, I still have plenty of pain and stiffness to go around.

The girls got rewards of a lollipop between Dr. Rheumy and the wait for labs/x-rays, stove-popped popcorn and Despicable Me after we got home, and  Ralph's ices after dinner.  If they were that quiet all the time, I would have to seriously think about a way to reward them that doesn't include pumping them full of sugar.  One thing at a time, right?

milestones

In about 9 hours, there will be two notable milestones in my life that are going to occur at the same time: my firstborn will be "graduating" from preschool, and it will officially be 2 years since my youngest came into the world.  My little girl is getting closer and closer to being a full-fledged school-aged child and my baby will really no longer be a baby.  Slowly but surely, my kids are growing up.

mack trucks and mortality

I have not been well this past week.  You can probably guess that by the first half of this post's title.

I was naively lulled into a false sense of security by my methotrexate, thinking that maybe I am really not doing that badly with the RA.  This line of reasoning came from the fact that I was only having a "minor" flare when I went back on the MTX after the 4-month hiatus.  It was just my hips screaming and my hands swelling to the point that they were barely recognizable as my own; nothing systemic going on.  I figured things were going pretty well if that was all I was complaining about after months of not being on any treatments.

I have not taken MTX in 3 weeks now.  Probably a stupid decision, but the week I was supposed to refill the script was a tough week to pay out-of-pocket.  Our new insurance was finally straightened out the following week, but after being off it for two weeks, I was starting to tell myself that maybe I should just wait till I get all my ducks in a row, have a referral to my rheumy, and get my labs done before I resume treatment. After all, I was feeling pretty good, minus the frequent flares in my hands - particularly the thumb and fingers of my right hand - so I figured I could wait a little longer.

My current state - feeling like I've been hit by a truck - started on Thursday as a nagging fatigue and has progressed from there into loopiness, episodes of palpitations and mild chest pain (something that tends to happen when I am stressed), a headache that won't go away, and pain involving my left eye.  Along with the eye pain has come blurred vision and strabismus (wandering) in that eye.

Not having chosen a PCP yet, and not wanting to go back to my old PCP - the wait times crept from 20 minutes to nearly 2 hours over the 3 years I had been seeing him - I went to an urgent care center.  That doctor noticed the strabismus, which I had not seen myself, and was concerned about that and the headache, so I got to go for a CT scan this morning.  Fun!  That came back normal, and I assume the EKG he did in the office was fine as well since I haven't heard otherwise.  I am just waiting for blood work results now, to rule out Lyme Disease since I was bitten by a couple of ticks on our trip to Virginia in early May.  The doctor thinks Lyme is unlikely since it is not nearly as prevalent there as it is here on Long Island.

Tonight I am aching all over, muscles and joints alike, the headache is not yet gone, and my eye is weak and in pain.  I woke up the last few days barely able to straighten my right arm at the elbow, and my left shoulder was screaming while I tried to prop myself up on my left arm for a few minutes last night.

I don't think I have Lyme Disease.  I think I am having one hell of a flare.

Feeling relatively good for a few months must not mean as much in terms of disease activity as I was secretly hoping it did.  How stupid and naive of me to assume that I'd be okay going off MTX for a little while again!

On a separate, but somewhat related topic, I have been thinking of my own mortality since yesterday.  A blogger in the RA community, RA Superbitch, passed away last week.  There hasn't been an announcement on her blog or Facebook page concerning the details, but she had been dealt a really shitty hand with her RA and it seems to me, along with many others, that her RA is what caused her death.  I did not "know" her well outside of reading a blog post here and there, but I know she was a cherished part of the RA blogosphere and will be sorely missed.  She was in her 30s, with a husband and young son, so it really hits close to home for me.  And makes me think that much more about how serious this disease really is.

Now that all of this has been said, I am going to buckle down and choose a PCP.  It's time to really focus on treating my RA.

starting again

I started this blog about 18 months ago, when I was doing a lot of knitting, including some for other people.  I knit a bit for charity, for sale, and for trade, and I wanted a place to be able to share my work with friends and customers, both current and potential.  I only wrote a couple of entries that first week, and then one several months later - typical of me, to start something and then not follow through with it.  I knit for others less and less over those months as well, not doing a good job of keeping up with deadlines, hard or soft.  I love to knit but find that knitting for someone under deadline, unless it's just for a gift (and even then sometimes), makes me anxious.  And when I get anxious, I have a hard time dealing with the thing that is making me anxious, so I push it back until I can't ignore it anymore.  That's really no way to build a business, even a small one like knitting out of your home.  Not to mention it's a total disservice to the art of knitting: something that should be enjoyed, and has even been shown to reduce stress.

So the blog was ignored.  Last entry was May 1, 2010.  I decided to delete the previous three entries because they didn't really have more than a list of projects I was working on at the time.

In July 2010, I was diagnosed with Rheumatoid Arthritis, a systemic autoimmune disease that affects people of all ages.  To make a long story short, I had been having symptoms on and off for years that I only attribute to the RA in retrospect, and when I finally pushed for testing, several markers for an autoimmune disease were there.  (In fact, my primary care doc thought it was Lupus at first; my rheumatologist is the one who felt it was more likely RA.)  The most specific test to date (the anti-CCP antibody test) came back off the charts, both confirming that it was, indeed, RA and indicating that I will have an aggressive, progressive form.  It would take a long time to talk about everything that led me to believe an autoimmune disease was brewing in my body, and I'm not ready to get that far into it right now.  I'll save it for another day.

My knitting mojo has been coming and going over the past year or so, as it often has since I taught myself to knit about 4 years ago.  Sometimes it hurts to knit, other times there's too much going on and I just can't focus.  Either way, I'd like to write a bit about knitting and how it is affected by my RA.

The main reason I'm blogging now is because I need an outlet.  I guess know that some people don't think RA is a big deal; that you can do something as simple as lose some weight or exercise or change your diet and it'll go away.  It doesn't work that way.  It's an all-encompassing condition that often can't be tamed by diet, exercise, weight loss, or even heavy-duty drugs.  (I'm not talking painkillers - I'm talking TNF inhibitors and drugs used for chemotherapy.)  It can be overwhelming for me, and I need somewhere to talk about it where nobody is obligated to listen.  I have friends I can talk to, over the phone or on message boards, but often I feel like I'm backing them into the conversation.  I am not faulting them if they don't want to hear it; sometimes you can only hear something so many times before you want to turn your attention elsewhere for a little while.  I feel like if I blog about it, at least they can make the choice to just not read if they don't want to hear it that day, or week, or month...or ever.

That said, I'm hoping to share plenty of happy things here too.  I don't want it to seem like I'm constantly complaining or that I don't appreciate the things I can do, the people in my life, etc.  I want to chronicle the good things along with everything else, even if it's just to give myself something to smile about on a harder-than-usual day.