Wednesday, May 7, 2014

Half Marathon Race Report, with a Side of Venting

Disclosure: I'm writing this on the morning following one of my biggest "screw this shit" meltdowns ever.  Really, I'd prefer to insert the f-bomb in place of the "screw" but I'm trying hard to be a better person.  I'm cranky and I have a headache because I didn't sleep at all, so not sure how much progress I'm going to make today on the self-improvement front.  More on that later.  I'll put it at the end so those who are nice enough to read this can stop before I start complaining.

I'm a little behind, but really, my main reason for posting is to share one of my recent triumphs: first half marathon in 2 1/2 years!  Training went perfectly.  Nailed every run, felt great the whole 10 weeks.  I wasn't looking for a time (I don't usually at this distance), just looking to finish, so I didn't do any tempo runs or speed work.  Aside from logging the miles, the only race-particular strategy I trained with was to deliberately run a lot of mid-week 6 milers.  I'm so lucky to not have any lower body pain, but I still struggle with morning stiffness in my knees and hips.  However, I know myself well enough to know that if I can get through the first hour of any workout that is usually enough time to loosen up.  So, it was really the first half of the race I had concerns about, more so than the second half.  But all those hour runs gave me a lot of confidence that if I just stuck with it I could finish feeling well.

TMI WARNING: (read on at your own risk, especially if you are male)

So, I ran and ran, through some achy-ness and one of the junkiest northeastern winters to date, and made it to my taper week without incident.  Awesome.  Then, major gynecological incident Thursday into Friday, subsiding but still bad over the weekend...including into Sunday.  I won't go into details, but I've been dealing with some massive, severe pain for about a year (RA has nothing on this; it landed me in the ER once), and the hysterectomy that I've been trying to avoid for months can't wait anymore and is scheduled for June 4th. I'm so upset and overwhelmed that I can barely deal with the fact that it is happening.  But the more immediate concern that weekend was would I be able to do the race I had spent the past ten weeks busting my ass for.  Friday at midnight I literally thought there was no way I could imagine it, and I didn't even care about the lost training time or the lost $75.  It was the last thing on my mind.  A lot of Percocet, Tylenol and Advil (way more than the recommended limits) Friday afternoon into Saturday, and I thought maybe I could pull it off.  By Saturday night I had decided that, come hell or high water, I was showing up to that race, damn it, and I was going to finish that mother f***er, even if I had to walk.  There was no way that I was going to work so hard to run with RA only to have my uterus be my undoing.  Five Advil with my pre-race bagel, and the next thing I knew I was standing at the starting line of my 10th half marathon.

Like I said, I was really just hoping to finish and reclaim part of my pre-RA identity.  Admittedly, I was kind of aiming for a 2:10 time, just concentrating on holding a steady pace.  Nothing spectacular, but I was fine with that, and I wouldn't have been upset if I didn't hit it.  After the awful preceding days, I showed up that morning just hoping to make it through without tears, but wishing for at least a sub-2:20.  I joined the 2:10 pace group, and was off.

The first 6 miles were exactly what I expected them to be: clumsy and stiff, but aside from being a little cold (low 40s at the start) I felt comfortable.  Mile 8 I started to pick up the pace because I felt like I could.  At mile 10 I saw a friend volunteering at a water stop with Special Olympics.  It was the first time I checked my watch, and I realized I might be able to break 2:10.

In this post I wrote about how the 11th mile tends to be my toughest, but that morning I felt good, I was just starting to get a little tired.  And, for the first time during the race, I kind of let my mind wander.  I thought a lot about my kids: Rhys, who trains four hours a day as a gymnast and has talked about being a scientist who studies autoimmune diseases; Wes, the boy who loves an overhand smash more than any other tennis shot, and never lets me pour anything if he notices I am struggling; Gwenny, my little ballerina who loves to dance, run, and ride her bike, and who practiced so hard to pronounce "rheumatoid arthritis" so that she would get it right; and my little Max, the George kid who has to work harder than the others at sports but never gives up and who always asks me if I'm OK.  Of course I also thought a lot about Sean; I couldn't do life without him. I thought about our dear friend Fran, who lost her long battle with breast cancer just several weeks ago.  She was diagnosed at stage IV, and endured extremely taxing treatments to be able to be with her husband and three kids as long as she could.  Fran showed me that true courage is fighting each battle with everything you have even when you know you will ultimately lose the war.  She was the one who encouraged me to write about having RA, and I still often go back to read her text that says, "I'm proud of you."  I miss her terribly.

Before I knew it I was at the finish line.  Chip time: 2:08:27.  I didn't see that one coming!


Sean's pic of me after finding him at the finish.  I was so cold!


With Sean :



With my kids, sporting their Cure Arthritis bracelets.  Thanks to Derek at the Arthritis National Research Foundation and Racing for a Cure!


And, random pic with one of my best buds.  Thanks for always being there for me and our family, Jean!  I really love this picture.


I couldn't have asked for a better race under the circumstances, and I'm already thinking about what is next.  Ideally, I'd like to do a full marathon (my unfinished business that I described in my first post) or a faster half.  I think I can hit 2:00 at my next one if I train right, but I'd also be happy with 2:05, as it might be to my advantage to take a more conservative approach.  However, I have to get through June and see how I'm doing.  Hoping for a minimally invasive surgery, but my doctor won't know for sure if she can do it laparospically until she is able to see for herself.  I tend to bounce back from things like this pretty quickly, so I am hopefully optimistic that I'm only going to deal with two weeks of down time.

Now, to address the meltdown.  I'm sharing this only because I know there are patients who can relate.  I'm so lucky; I've responded well to medication and generally, I feel pretty great!  The only frustration I have left are my hands and my wrists.  They hurt so much too much of the time, and while it's not enough to stop me from doing what I want to do, it's making certain things very difficult and it's miserable.  I'm not looking for sympathy; these are the cards I was dealt, and in the grand scheme of life things could be much, much worse.  Because there hasn't been a change in my hands, my rheumatologist ordered a Vectra DA test, a series of RA-specific biomarkers that measures disease activity and classifies it as a single score indicating low, moderate, or high activity.  My results came back as low activity, which is exactly as I would describe it in my unprofessional, untrained opinion.  It was nice to be validated when I feel like I've been spending way too much time being a patient these past two years.  I'm desperately hoping this means I'm getting closer to remission. The flip side is that I don't have an answer as to why my hands and wrists aren't improving, despite being on the meds that I have dutifully taken but hate with a passion, and after agreeing to a second wrist surgery that I was always skeptical about.  I know this doesn't make any sense, but I was so much happier when I thought bad hands and wrists were something I just had to live with, and most of the time I wish I had never found out the cause.  And I know some RA patients would have me exiled for this comment, but I'm actually at the point where I wish someone would tell me it's all in my head.  I honestly think I could deal with that better than the clinically apparent, red, enlarged, inflamed, swollen joints that I feel like I have no control over but can't ignore and can't hide.

I am thrilled with my Vectra DA results.  I am less than thrilled with the message of "stay the course" that was given to me by the MA who called.  I don't want to stay the course, I want OFF, and I want off NOW.  But I also want my hands to feel better.  I want to open jars, pick up things, and ride my bike painlessly.  I want to weight train and do push ups.  I want to swim.  I'm sick of going to the doctor all the time.  I hate blood work, I hate thinking about this crap, I hate things that aren't straightforward.  I really hate Big Pharma and their advertisements (cynically so glad they are capitalizing on the misfortune of others), and I'm angry that commercialized (read: profitable) tests are now finding their way into the chronic illness market.  I don't want to go to any more doctor appointments ever again.  I don't want a freaking hysterectomy and I don't want to have RA anymore.  I want to call my own shots, and I feel like I haven't been able to do that in a very long time, and I feel like I won't be able to ever again.  Most of the time I'm able to deal, but last night was one of those rare occasions where it felt like everything was too much, and I lost it.  I guess there's nothing to do at this point except wait to see what my rheum's take is on all of this.

A few cups of coffee, a plain, white bagel with sugared-up cream cheese, and a Hershey bar as I write this (because going paleo, gluten free, anti-inflammation hasn't done a damn thing anyway), and I'm feeling a little more rational this morning.  Thank you to all the rheum patients who can relate, and thanks to all the readers who just "listened" and celebrated my small accomplishments with me.  Off to the gym for a little while now, and hoping for a better version of myself by the time the kids get home from school and Sean gets home from work.

Thanks for reading!
~Lori


Saturday, March 15, 2014

In Memoriam

This is the post I've been wanting to do for a while.  The words have been in me forever, the feelings are with me daily.  I'm doing it a couple of weeks in advance of the date I will publish it, not sure I will actually go through with it, knowing I would never be composed enough to sit down and write on the day it is meant be read.  It has nothing to do with running.

Fifteen years ago today we lost our first baby.  To this day, I can hear the disbelief in Sean's voice when I called him.  Stunned, hurt, and sad, we carried on with life.  And then it happened again about seven months later.  All the same emotions, with confusion mixed in.  One miscarriage could happen to anyone, but two.... We weren't clinically eligible for reproductive endocrinology testing at that point, but my ob-gyn recommended that we not get pregnant again unless we were sure we could handle the possibility of another loss.  We knew that we couldn't.  So I immersed myself in my job and grad school, and Sean was consumed with the demands of residency.  Every once in a while we would talk about the worry we shared: would we ever have children?

In fall 2001 we decided we were ready to try again, and we got pregnant quickly.  We breathed a sigh of relief after making it through the first trimester, but that security was short-lived.  An early placental abruption at 16 weeks landed me flat on my back in bed for a month.  How quickly elation disappears when your doctor tells you, "I'm sorry, there's nothing we can do except hope for the best."  I wasn't even allowed to move unless Sean was home.  But Baby George hung in there, and the tear sealed.  We learned it was a boy the same day we learned that that the pregnancy had a good chance of remaining viable.  Again, the relief didn't last, and soon contractions began way too early.  More bedrest, more bleeding, lots of monitoring, but  a healthy Rhys was born on October 1, 2002...ten days late, which was kind of funny after all that worry that he would be so early.

Certain the first two losses were nothing more than sorrowful instances of unfortunate luck, we began to think about a sibling for Rhys.  Sadly, nature had other plans.  Another loss in August, and yet another a few months later in January.  Rhys was 15 months old at that point, and I had just lost my grandmother, the strong woman who helped my single mom raise three kids, a few weeks before.  Officially branded a "recurrent miscarrier," I began to wonder if it was Rhys who was the exception, not the little ones we never met.  Our world was shaken, and it got to the point one day when, as I was holding my toddler close, I asked Sean what constituted a nervous breakdown because I was pretty sure I was having one.  I ended up with a prescription for Zoloft and we both were handed lab orders for an infertility testing.  I still remember sitting in the chair, staring at the imposing stack of vials.  I learned years later that the answer wouldn't be found in any of them.  An appointment with a REI specialist led to daily progesterone and baby aspirin.  As our blood tests revealed nothing, it was simply a shot in the dark.  Soon enough, we were pregnant with Wes, and Gwen and Max followed closely behind.  Three kids in 27 months.  Once we had Wes, the amazing REI doc we trusted and loved bluntly said to us, "You don't have any time to waste if you plan on having more kids."  So, to anyone who knows our family of Irish triplets and has wondered why we had them so close together, there's the answer; we didn't really have a choice.

But the pregnancies were difficult and complicated: more abruptions, more contractions, retained placentas, amniotic issues, growth insufficiency, blood loss, transfusions, weeks and weeks spent in the hospital, months of bedrest at home, c-sections.  And, out of the blue, I developed a heart arrythmia, SVT, compounded by a near-constant sinus tachycardia.  Sean was in fellowship at the time, and the embarrassment of one of his attendings, my cardiologist, calling him during his workday to say, "Lori is sitting here in my office with a heart rate of 140" was mortifying.  In my mind, growing a baby was something women were built to do, and I couldn't understand why I was failing miserably when I was so healthy.  I was lonely and scared during the hospital stays, and when I was home it pained me to see other people tending to my kids in a way that I wasn't able to.  Of course I was grateful for the help of family and friends, but it was my job to take care of my kids, and I couldn't help but to feel responsible for the incredible amount of added stress for Sean during his hardest training years when he was working the most.  Our children were worth everything, of course, but to date, those years still rank as the most difficult of our lives.

So why am I sharing this lengthy saga on a blog about RA?  Because as it turns out, it's all extremely relevant.  At my initial appointment with my rheumatologist, after reviewing my pregnancy loss history, she sighed and remarked, "Well, now you know why.  That's too many for a mom to lose."  Several months later at my yearly ob-gyn check-up, the first since my diagnosis, my doctor told me that about 50% of all RA pregnancies end in miscarriage, and she said that placental issues, like the ones I kept having with all the kids, were considered easily explained complications for a woman with RA.  When I noted that I couldn't understand how the RA wasn't caught in all those blood tests I had done so many years ago, she told me that only lupus tests are included as part of the standard infertility work-up, not rheumatoid factor, even though the consequences are practically identical.  So, in a case like mine, it made a lot of sense; when I had my initial rheum bloodwork done, the only lupus panel test that came back positive was my dsDNA, which is commonly found with RA.

Infertility and pregnancy loss are incredibly difficult topics to discuss, and ones that are often kept very private because it's usually easier that way.  We were no different; only a very close circle knew of our struggles.  And a common thread of frustration in the autoimmune rheumatic community is that the included diseases can be "invisible;" meaning, to look at many of us, no one would be able to tell that anything was wrong.  When these two silent worlds collide, the resulting outcome is a black hole of emotions and unspoken words.

As a woman and mother who has straddled the border of these two conditions, I sometimes find myself impatient with the advocacy groups of both.  Why wouldn't all autoimmune diseases be explored as part of REI testing?  And to the rheum community, please remember this: there are heartaches that sting in a different way than inflamed joints.  There is another kind of fatigue that has nothing to do with disease activity and everything to do with grief that sometimes catches you unaware and keeps you up at night.  There are scars that aren't results of surgeries.  Just as patients may cling to memories and remnants of wellness, there are those of us who treasure a single ultrasound and a positive stick pregnancy test. While there is emptiness that comes with not feeling physically whole, there is the type of void that surfaces when your arms feel like they should be holding an infant...all these years later.  As I feel the symptoms of illness or the side effects of meds, I also vividly feel the presence of our four other children...every single day. RA is just as responsible for these things, too.

I don't know when or why I started referring to each of these days as a "Baby Day," but I guess it's my way of acknowledging the potential happiness that once existed with our little ones: March 15, October 7, August 2, and January 16.  They are always rough, and they always feel like it just happened yesterday.  We buy flowers on these days, in remembrance.  Sometimes I do it, sometimes Sean does it, sometimes we do it together.  Our kids don't know why, and it has never occurred to any of them to ask.  I always buy pink ones in January because I am as certain as can be that baby was a girl.  I know it, in a way that a only a mom could.  I think of her every time Gwen tells me she wants a sister.

We have come to terms with our family's history, and find so much joy in the kids we have with us.  I had an thought not too long ago: it's common knowledge that RA, like most autoimmune illnesses, go into remission during pregnancy.  While mine may have caused some bumps in the road, at the same time, I was probably in some sort of remission after having Wes that allowed me to get and stay pregnant with Gwen, and likewise for Gwen and Max.  In their own way, I think my kids kept me healthy...healthy enough that they all allowed each other to come to be.  I'm not sure how medically sound that theory is, but it's one that gives me a lot of comfort.

Thanks for reading.
~Lori





Monday, February 3, 2014

Race Report!

I don't even know if it's acceptable to do a race report for a 10K, but I will because I want to.  It's snowing (again) here in PA, my kids are quiet and occupied (thank you, Monopoly Empire and rainbow looms), and I don't feel like doing our taxes right now.  So I figured, why not?

The view is pretty from inside my house, but I'm glad I wasn't dealing with this garbage yesterday.  I would have bailed.



Quick catch-up leading up to race day: had been running pretty consistently, worked back up to 6 miles, had to go off Enbrel for a month prior to race because of outpatient surgery (nothing RA-related, everything is fine), was 99% healed from surgery by race day.  However, my hands and wrists have been awful, I was feeling the effects of no meds for a month, had rheum appointment last week and was switched to Cimzia because the Enbrel wasn't cutting it.  First injection happened Thursday night (thank you, Sean, I was a hot mess and couldn't do it).  A little nausea that night, nothing I couldn't handle.  Saturday brought an exhaustion like nothing I've ever experienced, and I have no idea why.  I doubt side effects would happen 36 hours later.  Spent most of the day out cold in bed, and I think the last time that happened I was in my 20s.  I woke up Sunday morning (race day!) tired, stiff, and not knowing if I could go or not.  My very protective husband tried to talk me into just going with him and trying to run 6 miles on the treadmill in our warm gym.  I made a deal with myself that I would get dressed for the race, eat, and if I still didn't feel like I could go, I would go to the gym instead.  I got in my car and went.  Lori-1, RA-0.

It's been bitter cold here in Pennsylvania, and this temp in the parking lot seemed almost warm:

Yes, my dashboard is that dusty.  I'm going to take a second to make a quick RA PSA.  I know a lot of people hate the cold.  I know it makes a lot of people miserable.  But it is very different for some of us.  True cold intolerance is awful, and it can make functioning extremely difficult.  No matter what I do, I can't get warm, or even remotely comfortable.  I wear a base layer of Under Armour Cold Gear almost all of the time, and I often wear thin gloves inside my house.  I know I'm driving Sean crazy by constantly bumping the heat up to 74, but he's a good sport and never says anything.  So, I still can't believe that I signed up for and showed up at a February race.  Lori-2, RA-0.

Once there, I actually got out of my warm car and picked up my bib and shirt.  Then I went back to my warm car to wait for the race to start.  Lori-3, RA-0.

Shout out to our local running club, The Lehigh Valley Road Runners.  Their races are fantastic: affordable, not big bells and whistles affairs, but great courses, great food, great swag.  That's a Saucony long-sleeved tech shirt.  I just wish I had gotten a medium instead of a small because the sleeves will be short on my monkey arms.  But considering the race fee was only $27.50, and a portion of that went to a charity, I think it's a bargain.  A bonus is that the Lehigh Valley is home to the Runner's World Headquarters, so there are some seriously fast, seriously seasoned runners and race directors who often help plan the local races.

Last pic before I got out of the car and went to the starting line.  Lori-4, RA-0.  Those who show up to races tired, sore, and achy are allowed to be generous with scoring.  Now you all know that.  I'm thinking I should contact Under Armour.  Hat and shirt here.  I could be a spokesperson.

The race itself was really hilly, but I managed to run the whole time and finish it.  Those were my two primary goals.  My secondary goal was to hold about a 10 min/mile pace.  CHECK.  It's a big difference from a few short years ago when I was running anywhere between 8:00-8:30 regularly, but I can honestly say I really don't care anymore.  Gratitude for physical health works wonders for mental health.  Three more points for me.  Lori-7, RA-0.

Now, I'm going to take a minute to talk about Liz, and embarrass the stink out of her when she reads this.

She was one of my first friends I met when we moved to the area 7 years ago.  I remember our first conversation.  She asked if I happened to have an extra snack because she forgot her son's for that day's soccer camp.  We started chatting, and I learned she was a triathlete and a trainer.  We've been through a lot together, both athletically and personally.  Everyone who knows her knows she is an amazing athlete.  Everyone who knows her well knows she is an incredibly giving person.  I've talked about her in this post and this post.  She's also the council director of our local Girls on the Run chapter, a fantastic non-profit that helps turn young girls into runners.  Check it out, they do incredible work.

She's in the middle of training for a spring marathon, and just finished a 17 mile long run on Saturday.  She was scheduled to do 8 on Sunday, and was running the race as part of that.  She is fast enough that she would have probably won her age group, and she definitely would have gotten one of the extra gifts they give to the first 50 male and female finishers.  But, she so very kindly ran with me (not even her very fast husband!), because she totally knew I needed her.  Thanks, Buddy.  XOXO

Yesterday, February 2, was also Rheumatoid Awareness Day, led by the Rheumatoid Patient Foundation.  So, it was great that yesterday's race was the first opportunity I had to wear my Racing for a Cure shirt.  I joined the team this past month.  It is one of the fundraising arms of the Arthritis National Research Foundation, a four-star rated charity by Charity Navigator.  I love that I can contribute in a way that is meaningful to me.  I have set up my own fundraising page, and I will start actively seeking donations when I register for a half-marathon.

Now that the Superbowl 10K is done, I feel like I can seriously start hoping and training for a spring half.  But here is the current frustration I am having...emails like this:

I get it, race directors want to fill races.  And I also get that it will sell out.  But I'm getting irritated by having to commit to races months and months in advance when the fact is that anything can happen to any runner at any time.  It's just hard when you're managing a chronic illness because you know that the probability of something happening for you is greater than that of the average runner.  For example, yesterday's race is one of the most popular in our area, and when I signed up in November I had no idea that I would have a totally unexpected procedure and have to go off Enbrel for so long.  I won't go into details, but it involved general anesthesia and ended up being a bigger deal than we expected it to be.  I guess that's the risk every runner assumes, though, when they hand over an entry fee.  I just wish I could wait until closer to the date of the race.  So, I'll train, but wait until the last possible moment to register!

Thanks for reading!
~Lori


Tuesday, December 31, 2013

Mile 11

I've run several half marathons.  Some I went out too quickly, some I went out too slowly, a couple were just right, and one was for pure fun.  I've overtrained, I've undertrained, I've followed training plans to the mile.  A few were in the rain, one was in blistering 90 degree heat, most were cool, one was a perfect 70 degree fall day with no humidity.  It's my favorite distance.

The one thing that all of them had in common was that freaking mile 11.  Ten miles in the bag, 3.1 to go.  Running on tired legs, but the end is in sight.  For some reason the 11th mile is always the hardest for me, but after all these years, that's probably 98% mental at this point.

Because I like to read a lot, and because I was an English major in college, and because I'm pretty cerebral (in my own trumped up opinion of myself), I tend to build constructs of metaphors for life circumstances, both the good ones and the bad ones.  So, I wasn't really surprised to recently catch myself thinking symbolically about my current situation.

Irrelevant aside: Last spring my oldest son and I had quite a discussion regarding the author's use of the color orange and it's significance in Life of Pi.  One of my happiest parenting moments ever. My non-reader husband was in the car and I think a piece of his science-oriented soul died a little. 

I restarted Enbrel back in July-ish, after an experimental hiatus gone bad.  I made a ton of progress on it the first round, and I expected nothing less the second time.  And it has helped, tremendously, in some ways. My knees are generally pain-free, and the only lower body issue I have is morning stiffness.  I can live with that, no problem.  I can run and I can bike, both outdoors and in my beloved spin classes.  Not a day goes by that I'm not thankful for all that I am still able to do.  I am very aware that I am one of the lucky ones, and I am equally aware that luck can change in an instant.  I exercise just about every single day, for two main reasons: 1. I love it, and it helps me feel normal and fit and, 2. I worry that the level of activity I'm able to enjoy may be fleeting, and will vanish without notice.  All in all, I feel like I can honestly say I'm doing relatively well (emphasis on relatively...as in, compared to many patients with RA).  And I'm generally a healthy person, and that counts for an awful lot.

If I'm going to be truthful, however, it hasn't exactly been autoimmunity utopia either.  My hands suck.  There, I admitted it.  In fact, not only do they suck, if I was cornered for a blunt assessment, I would have to say that they are actually getting worse.  And my damn wrists, the problem joints that started this mess, continue to give me issues, despite two surgeries.  My elbows still have that irritating stinging and burning, not enough to inhibit any activity, but just enough to remind me that there's crap going on within my body that is out of my control.  I've also lost a ton of muscle this past year, and I get uncomfortable when well-meaning people notice and remark on the obvious change from the strong athlete I used to be. So while every day I praise the running gods with gratitude that my legs have been spared, I also curse the RA demons when the fear of the unknown creeps into my thoughts and plants feelings of inadequacy and uncertainty.  Those moments are pretty miserable, and ignoring them only works for so long.

The fact that I can't stand going to doctors is something I've mentioned before, but when I went to my last rheum appointment in October I was a pretty big girl.  Meaning, no hyperventilating or heart palpitations in the waiting room.  Seriously, I have real anxiety over going, and a white coat hypertension reading of 147/90 to prove it.  But that day I was the pragmatic patient, and I felt like I had a decently candid conversation.  My rheum summed up my current state of affairs by saying (paraphrasing), "Lori, you're doing a lot better and moving closer to remission.  But you're not quite there yet."  In other words, I had come a long way (10 miles), but I still have a fair amount of ground to cover (the last 5K)  before qualifying for clinical remission and getting off the meds (the finish line).  Essentially, I'm at mile 11.  And like that last water stop that holds you over until the food tent is earned, I've been told that a change in biologics may be what is needed to get past these few stubborn symptoms that aren't resolving.  It will be discussed at my next appointment in January.  Considering I spend every day hoping I can get off the Enbrel, I'm not thrilled about the idea of starting something new.  I just remind myself that there was a time that this diagnosis often meant a wheelchair and permanently deformed and damaged joints, and I try to be thankful that I am doing so well and that I have access to great treatment.

And what better way to celebrate wellness than by running with family and friends for a cause that's close to my heart?  A few weeks ago, a bunch of us ran in the Arthritis Foundation's local Jingle Bell Run.  Our team name was The Grand Slammers, courtesy of Wes.  We had so much fun!  Grown ups were outnumbered by kids, and everyone did great.  It was a first 5K for several of the kids, and a few PRs for some of the others.  Lots of reasons to smile and celebrate!

Here's a pic of all the kids before the race.  The Grinch doesn't belong to our group, but my youngest loves him, so I was glad he jumped in the pic:


I ran with Gwen and my niece.  We weren't exactly tearing up the roads, so I was able to get a pic of her mid-race...and text it to my husband while running...and reply to him....  But hey, it all counts!

Strong finish for Gwenny, after she stopped cold at mile 3 because I had neglected to tell her about the final 1/10.  Meltdown of epic nature happened with the finish line right around the corner.  It took some negotiation to get her to finish the race.  Like all good runners, she pushed through it! My niece is in front of her, I'm behind her because I thought it would look ridiculous for a 38 year old woman to sprint.  And I would probably trip.


Max wasn't ready for 3 miles, so he did the kids' race and hung out with my mom while cheering on his brother and sister.


I don't have a picture of Wes because he ditched me at the starting line to run with his friends.  Also like a good runner, he went straight for the snacks after the race, and it took me ten minutes to find him.  But I did get this pic of the sibling bliss shared by my lower middle and upper middle children.  They were proud to have finished their first 5Ks, and I was so proud to be there with them.  Wes ran the whole way and finished in about 34 minutes, and Gwen walked through the water stops and up a big hill and finished in 40 minutes (I think).

I have to give a nod to my oldest son, Rhys, who really wanted to be there but had a gymnastics meet, and to Sean, who also really wanted to be there, but had to drive the gymnast to New York.  Slacker kid only finished 3rd AA.  Just kidding.  I'm super proud of him too, and was sad I missed his first meet in the optional levels.  I'm posting his pic too, because that's just the type of obnoxious mom I am:

Next up for me is the local Superbowl 10K on February 2nd.  I'm looking forward to it.  I feel grateful to be able to run that far, although I'm not sure what my time will be because I don't handle the cold very well and the first couple of miles are always a little rough for me, even in ideal conditions.  I'm just so happy to be running, though, so I can truly say I don't even really care that much how I do.  If it goes well, my long term plan is to run The St. Luke's Half Marathon this spring.

Thanks to all who have read and followed me since the inception of this experiment in April.  Looking forward to 2014!  Be well!

~Lori



Friday, September 20, 2013

One Year Later

Several years ago, starting a few months after our youngest son was born, I worked out with a personal trainer at my gym.  I was post-partum and in desperate need of hard, quality workouts because I didn't have any extra minutes in my day for fluff.  Scott was fantastic.  A competitive body builder, he trained me like I was a guy and spoke to me like I was one too.  I would go to the gym early in the morning to do my cardio and three times a week I would go back at night after the kids were in bed to weight train with him.  Rolling his eyes at the circuit machines, he taught me all about the benefits of free weights and range of motion.  I curled, dead lifted, rowed, and bench pressed.  He threw medicine balls at me while I did incline sit-ups, making me do three sets of 25.  One night, after a particularly taxing leg workout, I almost puked walking out of the building, but I never felt better.  I was the strongest I had ever been, and to this day, I count squatting (all the way down!) without the assistance of the Smith machine among my favorite personal accomplishments.

He had a ton of knowledge about weight training and healthy weight-loss nutrition, but it was his "no excuses" demeanor, along with minimal recovery between sets, that really pushed me.  He didn't care if I was tired because I was up all night with a baby or toddlers.  Four kids under five were not a reason to slack off.  He had no patience for "that body image crap" and told me if I was going to play the numbers game then I should pay more attention to how much I was lifting and not the number on the scale.  I got a congratulatory fist bump when I did a full 100 pounds of lat pull-downs and he took away the self-consciousness of being on what was traditionally the boys' side of the gym.  

I think what was most valuable about my training with him was the way he let me know exactly what my potential was, even if I was clueless.  I will never forget the time when he grabbed the bar out of my hands mid-set, put it on the rack, pulled me to my feet off the bench and said in a tone full of equal parts exasperation and respect, "My God, Lori, your form sucks when you try to bench anything over 50 pounds.  Come on, now, you know you are better than this."

Fast forward six years.  The baby weight was shed, I got back into more endurance-type events and finished several half marathons.  I discovered that I love to swim, got pretty decent, and now I can hold my own in both pools and open water (I was even mistaken for an ex-high school swimmer once!).  I did two triathlons and set my sights on a half iron distance as a feasible goal.  Yet, it was during this time that I started to get that nagging wrist pain that turned out to be much more complicated than 800mg of Advil.

It was a year ago today I was diagnosed.  It sounds foolish in retrospect, but at that first appointment with my rheumatologist it never occurred to me that the medicine wouldn't work the way I thought it would.  I assumed I would be off everything by my December follow-up.  Biologics were only commercials on TV, and I thought I would give the prednisone a few weeks to work and I would be back up to running 35 miles a week in no time.  Besides remembering to take my pills and repeatedly unclogging drains due to the mtx-induced hair loss, I barely thought about RA at all in those early weeks because it was finally an answer and simply a temporary inconvenience that I was certain I could control with little effort.  I never once imagined that I would become one of those patients that had to give herself shots and I would have never guessed that I would end up back in the OR for another wrist surgery.  My knees didn't hurt that day and my elbows didn't either.  And the lung stuff...pulmonologists are for people with asthma and sleep apnea, right?  Or, like, if you're in the ICU.  They are not for people like me, but yet that's the next step if some of this doesn't start to calm down soon.  I never saw any of this coming a year ago.

One night not long ago, in those few quiet moments at bedtime when thoughts run amok and frustration meets worry, I mentioned to Sean how I thought I should be feeling much better than I was and how my running should be much farther along than it is. Feeling my voice break a little, I whimpered, "I know I'm better than this."  I sensed a familiarity as I said it, and when contemplating those same feelings a few days later I remembered that they were Scott's words, not mine.  As I sit now and reflect on what the past 12 months have meant to me physically and emotionally, I still believe I'm better than all of...it.  And at the risk of throwing out a cheesy life metaphor, I've learned to remind myself that we all have form that falters when weights of all kinds get heavy, and sometimes we need a spot, sometimes we need a lift, sometimes we need to be pulled upright, and sometimes we need to be reminded of what we can be.  I'm so lucky to have family and friends who do all of those things.

Although, my weight-training-loving husband would also agree that my form sucks when I try to bench more than 50 pounds.  Haven't done it in a long time, but I'm sure I will again one day.

And in other "Lori News" this happened:



I'm so excited.  I love it.  I waited a long time for it, and damn it, I earned it.  Of course, the week I picked to get fitted my hands started to hurt tremendously, more than they have in a long time.  A slight hissy fit ensued (I can be good at those, and of course, there was profanity involved), but I made the decision to get it anyway.  My reality is this: as much as I really believe I will get to remission, my hands and wrists will most likely always give me grief to varying degrees.  So I can deny myself or I can deal with it and learn to work around it.  The guy at the bike shop was awesome, spent two hours with me working on posture and keeping weight off my hands.  I've gone out enough times that I can confidently say that riding is not making my hands worse.  It's kind of like the same relationship my knees have with running: it's not easy, sometimes it's really hard, sometimes it hurts like a you-know-what, but sitting on the couch isn't going to do a thing for me.  Being active is good for both my mind and body, and I need to do it, every bit as much as I need to take the junky meds.  And you know what I did today?  I marked this anniversary by riding with one of my best buddies, and it was awesome. We took a selfie because we were both wearing purple.  I'm the one on the right.  Don't all the cool kids pose in front of a swagger wagon?


Thanks for reading!
~Lori 














Saturday, August 31, 2013

Some Love for Venus

I'm not typically one to idolize athletes, but I've admired Williams sisters since they began to dominate women's tennis.  Unapologetic gamers, Venus and Serena are completely badass without being bitchy.  I think they're fabulous.


In 2011, Venus was diagnosed with Sjogren's Syndrome, a type of autoimmune disorder that causes dry eyes, mouth, joint pain and swelling.  Her story in this video will sound familiar to so many of us: vague symptoms she couldn't pin down and debilitating fatigue (she described it as feeling "beat up").  I think what is especially interesting is that, despite being an athlete at the highest levels with presumably the best care available, it still took four years for her to get a diagnosis.  In that clip, just a matter of weeks after she got the news, she explained how she was relieved to finally have an answer, and I love the way she called treatment an "opportunity."  I can certainly appreciate the way she recognized the uncertainty that lay ahead (this video was from two years ago, and she had just pulled out of the 2011 US Open), but was determined to stay positive.

Now Venus is back again this year, and she entered in both the singles and doubles (with Serena) tournaments. I'm a huge fan of any American, but of course I feel a little more solidarity and affection for her. Though I'm a horribly uncoordinated, very recreational athlete, I relate to her struggles a little bit.  So my heart ached for her when she lost on Wednesday in the 2nd round of the singles after a tough three hour match.  But damn, she's 33 years old in a sport full of 20-somethings, and she still plays just as hard when she's ranked at 60 as she did when she was ranked 1st.  That's girl power, and I love it.

She came back from that match to play doubles with Serena the next day.  After dropping the first set 7-6, they beat their Spanish competitors and looked like they were having a blast doing it.  I watched that match curled up under a blanket, on our couch, barely able to move.  I am definitely one of the lucky ones who is responding very well to medication, but Thursday had been a really rough day.  I was up most of the night with our youngest (growing pains...ugh!) and suffice it to say that no sleep and sharing a sofa with a six year old can be hard on a body that needs some extra considerations.  My normally mildly achy elbows felt like they were on fire most of the day, I could barely straighten my knees for the better part of the morning, and my hands just wouldn't work.  I felt so miserable that I actually left after dropping off Wes at his baseball game that night (and of course, he went 2-3 with two doubles and four RBIs).  I have never done that before, and though I normally refuse to feel sorry for myself, I was totally having a bit of a pity party.  I spent much of that day on the verge of tears because the pain was so bad, and that just doesn't happen to me.

As I watched Venus play with Serena a day after losing a grueling match, I couldn't help but to feel inspired.  In my first post I mentioned how I desperately searched for information for athletes with autoimmune illnesses and had trouble finding anything for a while.  But here was one on TV, showing everyone that we can choose how we approach our challenges, we don't need to feel victimized, and we can regroup and try again after a bad day.  For her, it meant playing tennis in one of the greatest venues in all of sports.  For me, it was taking a much-needed rest day (along with some extra Advil), and then coming back this morning to run faster and more comfortably than I have in a very long time.  As I watched Venus, I also realized that she is a tennis player, and her condition is secondary to her career; it's not her identity.  Luckily for all of us, no matter what the state of our respective illness, we are the ones who remain in control of our own definitions.  We may not always like the way we feel physically, we never have a say in what our immune systems choose to do to us, but we are ultimately the ones who paint the big picture.  That's what I'm finding comforting today.

Venus and Serena play again this afternoon.  Tournament and TV schedule can be found here.  Let's show them some support!



Wednesday, July 24, 2013

All That It Is

Phrases like "extra-articular manifestations" are the reason I don't typically research medical stuff online.  About a month ago, after several weeks of sometimes fleeting, sometimes constant, pain under my ribs (which, thanks years of being an exercise fanatic, I knew wasn't muscular), I casually mentioned it to Sean.  After a few pointed questions, he said, "Hmm, sounds like pleurisy.  I think people with RA get that sometimes.  We need to mention that at your appointment."  I was so grateful he was able to come to the doctor with me because I really didn't want to go, for all the reasons mentioned in my last post.  Normally I don't care much, but this time I felt like I really needed him to be there, and he was.  Nothing was really surprising.  She confirmed that yes, it was probably pleuritic pain related to RA.  And I had already expected to be told that it would be a good idea to go back on the Enbrel.  As much as I want off of everything, I can't deny that it worked, and I can't continue to ignore that more joints are starting to be affected.  And while pleurisy in itself is not usually serious, it serves as a rude schooling in what "systemic" really means and a reminder of the scope of what it is to have an autoimmune disease.  So, I'm stuck on Enbrel for at least a full year because the wheels came off the bus when I threw a hissy fit asked very politely to stop early.

As I'm coming to terms with the fact that it's so much more than just bad wrists, I can better sympathize with the scores of patients who have been trying to explain their conditions to well-meaning family and friends.  IAAM/WAAD has promoted their "Start Talking" campaign with this in mind.  Lots of people feel that including "arthritis" in the nomenclature is confusing to those who equate it to the better-known, more common osteoarthritis.  I've experienced this myself: being told by someone very close to me, "I don't understand what the big deal is about arthritis."  That stung quite a bit, especially since I go out of my way to try not to make a big deal out of it.  Not to be misunderstood, I don't think there's anything simple about osteoarthritis either; my grandmother's knees landed her in a wheelchair.  And I have a very good friend who thoughtfully mused out loud, "You know, I sometimes forget how serious this is because you don't look sick."  She's right, I don't, thank goodness, and I don't consider myself to be "sick."  But there was something about finding out it was also affecting my lungs that made me realize that I hadn't really done a good job explaining what it is to my inner circle.  IAAM uses the phrase "It's autoimmune arthritis" to help make the differentiation, and while clinical and technical terms have never been my strong point, I know what it is to me on a day-to-day basis.

It's listening to your doctor say, "I'm sorry" when she gives you the diagnosis.  It's having to go to the store to buy a pill box and being embarrassed when you check out.  It's prednisone, methotrexate, folic acid, and Enbrel (or Humira or Remicade or Orencia or Xeljanz).  It's absolutely hating those meds, but being so very thankful they exist.  It's despising the commercials for them.  It's alcohol swabs and autoinjectors.  It's nausea and sometimes it's vomiting.  It's drug toxicity monitoring.  It's struggling to accept this is never going away.  It's holding onto irrational disdain for Phil Mickelson.  It's not giving a shit if he won the British Open because, honestly, it's just not that freaking easy for most people who are on biologics.  It's staring at your three month supply in the fridge and thinking everyone deserves easy access to treatment and care.  It's seeing a PSA for autoimmune research at Johns Hopkins during a Yankees game and wanting to jump in the car that very second, drive to Maryland, knock on an office door, and beg to be part of a trial.  It's swallowing your pride and letting your eight year old pour your milk for you.  It's your husband asking, "How are you feeling?" in a way that is... different.  It's looking into the same set of green eyes you've loved for the past 21 years and knowing this is hurting him too.  It's being so very tired and being told, "No, Lori, that's not normal, no matter how many kids you have."  It's wondering if the continuously sore, sometimes swollen lymph nodes mean something ominous but being afraid to call to ask.  It's the mortality gap.  It's having to hit the emergency stop button on the treadmill after only a few short minutes because the worsening pain under your ribs has taken the wind right out of you.  It's wishing your doctors knew the other you, the one who could swim 3000m without stopping and walk outside and run 10 miles anytime she wanted to.  It's being worried that you will slow down your family while on vacation.  It's reluctantly giving up some PTO responsibilities because too much is uncertain right now and you don't want to disappoint anyone.  It's wondering if you're going to be able to keep up with the crazy two year olds you teach and adore.  It's not knowing what to share, with whom, or when.  It's waiting 7 months to tell the director at the preschool because you don't want her to ever doubt that you can do your job.   It's being aware that, even with all the great medical advances in this specialty, some patients still become disabled, and it's harboring a secret fear that it could happen to you. It's learning that the vague symptoms you lived with for years, but never pieced together, were part of an illness that was responsible for some of the most emotionally difficult times of your life.  It's being so angry at RA because you will always grieve for those babies you never got a chance to hold.  It's wishing you knew then what you know now.

But it's also a lot of really terrific things.  It's heightened gratitude for all the other ways you are healthy.  It's your husband wrapping you in his arms, kissing you on the head, and saying, "Don't worry, we will take care of you."  It's having a life partner who is willing to move mountains so he can be at important appointments.  It's his endless supply of patience.  It's being thankful that the hand surgeon who has been on this journey with you since the beginning is also a runner.  It's being thankful that your rheumatologist is too.  It's appreciating everything those two have done for you and continue to do.  It's trusting them implicitly because you know they really care.  It's being on a first-name basis with the nurse who gives you genuine hugs when you come into the office.  It's being able to giggle when your six year old says that all the scars on your wrist make you look like Frankenweenie.  It's kneeling to take of wash out of the dryer, realizing it was effortless, and smiling because you can tell the medicine is working.  It's remembering that feeling and making peace with going back on the shots.  It's also being a little bit happy Phil won because that means Enbrel worked for him, and hopefully it will work again for you too.  It's knowing that, by and large, the use of biologics has changed everything.  It's having faith that remission will happen for you.  It's having a wonderful friend who knows a lot about lymph nodes take the time to call you at 9:00 at night and put your mind at ease. It's being thankful for supportive family members.  It's loving those friends who force you into talking when you don't really want to but they know you need to, and equally loving those friends who you know care but will never mention anything to you in person because they know it makes you feel uncomfortable.  It's knowing how lucky you are to be able to be able to get on the treadmill and into the pool in the first place.  It's believing you will do that 70.3 tri you've been wanting to do for the past three years, and while you're at it, you're going to do a marathon too.  It's having another friend offer to ride 56 miles tandem with you so you can do that tri while she steers the bike.  It's keeping a full Ironman on your bucket list because you know your endurance is your strength.  It's an online community that understands everything.  It's those who have done their service to awareness by making the decision to share their experiences publicly, and in turn, inspiring you to do so too.  It's knowing that there is so much more about your life that is utterly fantastic than there is not.  It's being able to honestly say you are happy.  More than anything, it's looking at your four children and thinking maybe you can convince the left side of your brain to believe in miracles.

Thanks for reading!
~Lori

Tuesday, July 2, 2013

Victories

Victory.  Frankly, I think it's a hyperbolic word that's used too casually with diminished meaning in American vernacular.  But I respect that it has personal meaning beyond judgment of others, so cheers to anyone who has conquered any obstacle that once seemed daunting.  Recently a campaign called Everyday RA Victories was launched to raise funds for the Arthritis Foundation, and I think it's a terrific, eye-opening effort.  RA patients and their family members and friends can submit tasks of triumph, and as the tagline states, "Large or small, every victory counts."  Each submission sends $1 to the Arthritis Foundation (up to $30,000), but I think the awareness that is raised is just as valuable as the funds.  Personally, I get a little inspired and validated whenever I take the time to visit the page; it helps me to appreciate the things I'm able to do easily, and offers a little solidarity when I get frustrated by chores that are difficult.

A few weeks post-op, I'm healing well and glad it's over.  So to celebrate and give myself a public pat on the back I'm going to share some of my own recent victories:

1.  Actually going through with the surgery and not running out the door.  Took three doses of versed in the pre-op area, though, and instructions to the anesthesiologist to go heavy on the meds.  I'm pretty sure everyone that dealt with me that morning thought I was off my rocker.

2.  Spin class four days post op.  Here's a grainy pic of a sweaty version of me after class.  Yes, that cast got pretty smelly and gross, especially since I hit the gym almost every day since that first outing.


3. Stairmaster x 4 post op, despite these damn achy knees.  I decided I cannot let them get worse, and as going up and down the stairs is starting to get difficult again I am determined to make myself face that challenge head-on.  It's not easy, but my thinking is the counter-balance of my two legs kind of mimics that motion without the same amount of stress.  I worked my way up to this:


4.  After I was done on the Stairmaster that day, I did this:

c

5.  Not cutting off the soft cast myself before my follow-up appointment.  I was dangerously close a couple of times, but to be honest, I probably wouldn't have been able to use the scissors anyway (insert RA joke HERE).

6.  Taking the methotrexate and not dumping the entire bottle down the toilet like I was tempted to do...for this week at least.

7.  Not needing an emergency Coke to ward off the mtx nausea last week.  Hoping for the same for tomorrow.

8.  And my favorite: My first run in over two months, the morning after the cast came off.  Only two miles (I was being conservative), but I had the best company any mom could ever want: my daughter.


I was super proud of her.  She's only 7, but she ran the whole way.  I've gone running, 2 miles at a time because the wrist can't handle much more than that right now, a total of three times.  It's so good to be doing it again.  My knees bug me while I'm running, but I can either sit still while they hurt or I can do something I enjoy while they hurt.  It's a no-brainer.

Next challenge: actually going to my next rheum appointment in mid-July.  I don't want to go; I never do.  I don't want to talk about all the stuff I know I have to, I don't want to admit what hurts, and I'm worried about getting more confused than I already am.  I will though, and it was a recent experience that will get me there: thanks to the post-op percocet script, I was able to enjoy several nights free of all pain.  No achy knees or elbows, no throbbing wrists, no wretched pain in my hands.  Nothing.  Sadly, I forgot what that feels like, and it made the crappy morning stiffness seem more pronounced.  I recently read an article in one of the arthritis magazines in which a NYC rheumatologist mentioned that the biggest disservice RA patients tend to do to themselves is to downplay their symptoms.  His point was that nowadays there's such an array of meds that can help improve quality of life and modify disease progression that there is no reason for us to suffer in silence.  (Yes, I know that there are many patients not getting relief from traditional DMARDs and/or biologics, but I think that's worthy of its own post.  And yes, I also know that there are those who were able to achieve remission through diet alone.  Big high five to those patients, and that's worthy of its own post too.)  I'm guilty as charged.  I've done everything that I've been told to do, but I'll admit that I haven't always told the whole story and I tend to present things in such a way that I hope will get me off all this medicine.  So, I will (maybe) go and I will be more honest with her (gonna give it my best shot) and I will try to be more open to treatment options that I may not want (OK, this is not realistically going to happen), even if that includes going back on Enbrel (Hell has a better chance of freezing over).

Thanks for reading!
~Lori

Thursday, June 13, 2013

Coming Clean!

So, I have this friend who is hilarious.  Like Tina FeySarah Silverman, and Chelsea Handler all rolled into one person.  Besides being funny, she's wickedly intelligent and amazingly thoughtful.  I swear she's a part of the 0.0001% of the population who not only reads "The New Yorker" but is good enough to write for it as well.  Said friend also got a little shit on by life, and developed alopecia several years ago.  She lost all of her hair, and it's probably never coming back.  

Pausing for one of those, "WTF is up with all this autoimmune crap?" moments.  Why the hell would someone's own body make all her hair fall out?

Recently we met for drinks with a third friend, and she asked that loaded question, "So, Lori, how have you been?"  And because she's such a good person, I knew she really, truly wanted to know.  She kind of knew some new stuff was going on, and I was met with that moment of hanging between feeling the need to spill my guts or responding with "Ugh, I don't want to talk about it."  I told them everything, though.  I kind of wrapped it up with, "But you know, I'm so worried that as the kids grow up, all they are going to remember about me were all the things I couldn't do and all the things I needed help with."  To be truthful, it's an insecurity I've been dealing with for a little while now.  In fact, I make a point to take my meds when no one is watching.

I already sang her virtues, but her response couldn't be any more perfect if it was scripted.  Paraphrasing:

     "Yeah, but Lori, don't you think it makes you a more compassionate person?  When you see other people dealing with struggles in their lives, don't you feel like you can relate better?  And, I think it's really important for our kids to know that we're not perfect, especially since we have daughters.  They know that we're human and it's OK.  I used to want to hide my hair loss all the time, but now I'm more comfortable with it."

Amazing Friend is absolutely right.  So, in that spirit, I'm coming clean with all the RA-related ways I'm not perfect:
  • Tying shoes hurts like hell, and sometimes feels impossible.  I haven't tied/untied my sneakers in months, I just pull them on and kick them off.
  • Opening bottles is really, really hard.
  • Pouring drinks from large containers is sometimes a gigantic mess waiting to happen, and I always have to use two hands because just using one is way too painful.
  • On a related note to the above, I spill and drop stuff all the time.
  • Scooping ice cream: forget it.  I didn't volunteer for any of my kids' end of year parties because I knew there was no way I could do it.
  • When I water the flowers I only fill the watering can halfway because it's the best way I can manage.
  • Holding a full cup can be really difficult.
  • Writing by hand is tough.
  • Pulling cards out of my wallet requires more dexterity than I can manage quickly, so when I go shopping I try to remember to slip my debit card in my pocket first so I don't hold up the line.
  • Pulling paper coffee cups off a stack and separating the lids takes me longer and always causes anxiety when there's people waiting behind me.  Doesn't keep me from stopping at Wawa three times a week, though!  
  • Driving, or more specifically, steering, requires Herculean effort, but with four kids in all sorts of activities, there's no way out of it.  Turning into parking spots is the worst.
  • Using scissors is a wild card; it can either be completely fine or totally unthinkable.
I certainly don't need a pity party because I'm ridiculously healthy in every other way.  I have absolutely no other issues whatsoever, and I rarely get sick.  But when I started mentioning some of this stuff to my friends that night, A.F. said, "Wow, I didn't realize how bad this was for you."  And she would have no reason pick up on it, despite being someone I'm close to.  But it made me realize that perhaps talking about it more openly may go a long way as many try to raise awareness for rheumatic conditions.

As far as exercising goes, I've been plugging away on the elliptical for an hour at a time and have returned to spinning.  It's getting boring, but it gets my heart rate up where I want it to be, so I'll take it.  I have looked longingly at the Smith Machine a couple of times, but I knew that was another cervical disc issue waiting to happen.  I even threw in a few sessions on the StairMaster, although I didn't do too many because I just really want my knees to calm down. 

I'm finishing this up on the eve of the dreaded repeat wrist surgery, but I'm hopeful this one will help.  After spending many sleepless nights trying to decide if it was worth doing again, I've taken the leap of faith and agreed to it.  I feel like I have a good understanding of the situation, thanks to several phone conversations with two different doctors and a PA.  The idea is that taking out the cyst will help the pain related to it and will solve that mechanical problem, and the neurectomy will help to alleviate any present and future pain cause by the RA.  My deciding factor was pretty much that while I wasn't any better off the first time around, I have nothing to lose and am getting more desperate.  I'm nervous, but the good news is that the downtime is minimal, and I should be running and spinning again within just a few weeks!  I'm disappointed to be missing the summer swim season, but hopefully I will finally be able to treat myself to that new road bike I've been wanting in a few months!  Maybe I'll even be able to remove some tasks from the list above!

Thanks for reading!
~Lori


Sunday, June 2, 2013

Birthday Cake and the Return to the Gym

Our oldest son is a competitive gymnast.  He's also the eldest child of an eldest child (me), so he has a penchant for perfection.  Furthermore, he's the type of kid who is all about goals and outcomes (sound familiar, runners?), so of course I worry about the eminent disappointment that inevitably comes with high expectations.  State championships were this past March, and he wanted to WIN (note the use of bold, italics, underline and caps...he wasn't messing around).  He had a fantastic regular season, made his mark, and was the kid everyone wanted to beat in the all-around.   He thrives on that stuff, but I don't like it because I think it's too much pressure for a ten year old.  So, in those final moments we had with him before he went to meet his coach and teammates on the floor, I said to him, "Rhys, remember, you are a lot of other things in addition to being a gymnast.  You're a son, brother, reader, baseball player, math whiz and space nut.  Gymnastics is only one part of your life, and while I know it's a big part of it, and important to you, it's just one of the many pieces of who you are and it doesn't define you."  I repeated those words six weeks later before his regional championships.

Am I a kick-ass mom, or what?  I honestly think it was one of my finest parenting moments.  But then again, I can set the bar pretty low sometimes, and I don't usually take the time to brag about incidents such as the time I forgot to pick the kids up at school or when I paid our two youngest sons a nickel each to stop fighting.

Anyway, today is my birthday (38!), and when my friend Julie wrote on Facebook, "Happy Birthday!  Write about it.", my words to Rhys came to mind.  I realized that those who only know me from this blog only know a small part of me.  So I thought I would share a few things, in random order:

  • I married my high school sweetheart. 
  • We adopted a little white kitty from a North Philadelphia shelter a month after we were married.  Fourteen years later, and he's still the only "child" allowed to sleep in our bed. 
  • We have four kids, three boys, and a girl: Rhys, Wesley, Gwendolyn, and Max.
  • The aforementioned kids didn't come easily to us; every day I marvel at our family.
  • I have a Bachelor's degree with majors in Elementary Education and Literature, and a minor in Religion.  I have a Master's in Reading and Special Education.
  • I used to be a public school teacher before having our kids, and I loved it.  Now I teach two year olds one morning a week, and I love that too.
  • I like gold better than platinum.  I don't happen to own any platinum, but it doesn't change my opinion.
  • I like dry wines, and I rarely spend more than $12 for a bottle.
  • I'm every bit obsessed with Princess Kate as my seven year old daughter is, I just don't admit it.
  • I'm such a gym rat, but I love to be outside whenever I can.
  • Running is my favorite activity, long swims are my favorite workouts.
  • I tend to overtrain.  I need to kick that habit, because it's been the reason for every injury I've had.
  • My favorite foods are Kraft Mac and Cheese (has to be from a box), Hershey Bars, and real Coca-Cola.  I don't eat them often, but it's worth every simple sugar calorie when I do.
  • I love baseball, and I rediscovered tennis when Wes started to play.  Still don't get the whole advantage/break point/deuce thing, though, no matter how many times Wes and Sean explain it to me.
  • I have school girl crushes on Derek Jeter, Rafael Nadal, and the lead singer in Fun..
  • I didn't really care for math; however, I never miss an opportunity to mention that I rocked AP Calculus in high school.  It's because I like to think that I could have been a particle physicist in an alternate life path.
  • In a parallel universe I am a particle physicist.  Just sayin'....
  • I'm a sunseeker who loves a good tan.  Yeah, I know, skin cancer, blah, blah, blah.  Whatever.
  • I love documentaries.
  • I really, really love to read, anything and everything.
  • I suck at sports.  Seriously.
While not exhaustive, it's probably more than enough to be boring, and definitely more than enough to make a point that everyone appreciates but tends to forget.  I'm not usually one to be introspective (who has time for that???) but today Julie's words struck a chord and sparked a thought.  I'm struggling with not running right now for two reasons: 1. I miss the activity and outlet, and 2. It's been way too much of an identifier for me, and I feel a bit lost without it.  And that's my own fault.

So, in workout world news, I jumped back into the gym this week, and logged more minutes on an elliptical than I care to mention.  I still have a little tweakiness in my neck, but not really any pain, so I decided to screw the rest crap and go to the gym.  It's not running, spinning, or swimming, but those will come back in time, after the pending wrist surgery.  I'm hopeful that I can exercise away the achy knees and I used the arm propeller things in the hopes of doing the same for my elbows.  Ellipticals can be a great low-impact, high heart rate effort...perfect for someone like me right now.

As for Rhys...he responded to my words of wisdom with, "No matter what happens tonight, no one can take away my hard work, and that's all that matters."  He took first all around at states and had the meet of his life.  Regionals went down a rough path, but he got over it pretty quickly within a few days.  It's nice being able to look up to your kids, and as I approach 39 I'm going to work harder on working hard and moving beyond disappointment when things don't go my way.

Thanks for reading!
~Lori