Running for Rare

I’m excited to be part of the Running for Rare team for my second year. Last year I participated as a rare community partner. I have hypoparathyroidism, a rare disease that causes calcium imbalance in the body. I developed hypopara 12 years ago after surgery to remove my thyroid. For the first 5 years after diagnosis, I worked hard to maintain a normal lifestyle. Really, I worked to hide the fact that I was trying to manage a chronic, rare disease. I wanted to be the same Mom, friend, wife and coworker I’d always been. I didn’t want to be a “sick” person. But in 2009 I was able to participate in a clinical trial at the NIH in Bethesda, MD and received a new treatment. The trial changed my life. That was when I decided that I wanted to do all I could to raise awareness for hypopara and help other patients with my disease find and access the best treatment options available. My passion for advocacy was born.

When I heard about the Running for Rare Team, I thought it sounded like the perfect opportunity to continue my advocacy work. Also, I have a long-standing love of the Boston Marathon, having volunteered with the B.A.A. on race day for several years. I was paired with Amy Atwood, who ran last year’s Boston Marathon with the team. Together, Amy and I worked to raise awareness for hypopara and all rare diseases, and funds for NORD and the NIH’s Undiagnosed Diseases Network. Our partnership began with an introduction email from Phil and the board. Amy and I began exchanging regular emails, and then texts, and soon visits whenever I would come into the city for study visits at MGH.  In short, we became friends. I was in awe of Amy’s dedication to training. Amy is a self-described non-athlete. Yet she was running almost every day, through Boston’s worst winter in history. I posted encouraging little memes on her Facebook page or texted her inspirational quotes every few days. And when I suffered my worst Rheumatoid Arthritis flare since my onset three years earlier, Amy’s genuine concern was obvious with her frequent check-ins. I was still flaring the day of the charity run. The weather was miserable, and so was I. But Amy was running 22 miles, for me, and for hypoparathyroidism. So I was there for Amy (and with a big sign!).

On Marathon Monday I gathered at mile 14 with the rest of the Running for Rare Team supporters. The excitement level was palpable. I waited eagerly for Amy’s arrival in Wellesley. It’s hard to describe the feeling I had as she came striding toward us. It was a mixture of awe for the grueling race she was running, and humbling pride in seeing my name and “hypopara” written on her shirt. Later, at the finish line, I would have the same feelings, but they would be far more intense. To think that someone would spend months training so hard, then hours on the rigorous Boston course in miserable weather conditions, all for someone she’d only met a few months ago, and a disease that hardly anyone has ever heard of. Amy’s efforts so inspired me that two weeks later, I ran the Providence half marathon with my daughter. And Amy was there with a sign, cheering us both on.

My experience as a rare community partner in 2015 was so profound, I knew, without a doubt, that I wanted to be involved with the team again in 2016. This time, though, I wanted to be the runner. I wanted to be able to connect with another rare disease community member and give her the kind of experience I’d had, to learn about her and the rare disease she faced every day. I think I had visions of being matched with some cute little kid who would think I was the coolest person ever, a hero, as I crossed the finish line at my not-so-speedy 12 minute/mile pace. Instead, I was paired with Emma Rooney, an adult living with type 1 Gaucher disease. Phil’s email described our pairing as a “remote partnership,” since Emma lives in Germany. Emma and I began to exchange emails, getting to know one another. We soon discovered we had several things in common. We both love good coffee, dogs, beer, and of course, running. Just this week we discovered we also share a passion for classical music. We exchanged information about our respective rare diseases.  I learned that Emma has had Gaucher disease her whole life and has been involved with advocacy for a long time, much longer than I have. Her advocacy resume is impressive, whereas I am just starting to build mine. Her running accomplishments are plentiful, as well. Emma has run several half and full marathons, and even a 100k ultra marathon. Emma is what I’d call a “real” runner. I have run just one half marathon, and at a pace I imagine a “real” runner would not even classify as “running.” I was starting to wonder why Phil had paired us up. I doubted whether I could support Emma in any way that she couldn’t already do for herself.

Soon into our partnership, Emma and I decided we would co-author a post for the team blog. We spent several weeks tossing ideas around, then began work on the actual post. Once we had a good idea of the form our post would take I drafted a rough outline in a Word document and sent it to Emma to add her portion. A little over a week later Emma sent it back, with her writing added. I barely recognized it. The document had been placed in some kind of editing form of Word that I had never seen. (And I admit to being far from a Microsoft expert!) I could add my own writing to the document, but I couldn’t, for the life of me, figure out how to get it out of editing mode and clean it up so that it could be posted. I finally had to admit defeat to Emma. I sent her the following email:

Emma, I’m working on my remaining portion of the blog post now. Here’s the thing…. besides being more experienced with advocating and running, you are also clearly more experienced with Microsoft Word!  Your changes look great. I’m going to add in my stuff and send it back to you, Do you mind creating the finished, post-able product? I don’t even know how to get it out of whatever editing mode you have it in. (btw, I’m starting to feel slightly inadequate in our partnership. not sure I’m bringing enough to the table!)

 

My message was meant to be light-hearted. But really, there was an element of seriousness to it. I was feeling inadequate. I felt almost as if I was not even qualified to be Emma’s partner. I felt like I just wasn’t doing enough.

 

And then, Emma responded. She started out by sharing a story about a particularly challenging time with her health at the end of last year. During that time, she also learned about the proposed changes to the Running for Rare Team this year and worried about the impact of those changes. Emma wrote:

 

Once I understood better that the changes could be a good thing I then started wondering what I could offer. I knew for sure I couldn’t run a spring race and I also thought it wasn’t very fair to partner me with a runner as I couldn’t really be there to support someone living in Germany. I kept telling Phil that I would like to do something but that I wasn’t sure what. Then one day, out of the blue he suggested paring us. I can’t tell you how relieved I felt. I felt extremely relieved that someone else would be doing the running and super excited that that person would be YOU. I always got the sense that you and Amy were the coolest team and I thought it was really great that I’d actually get to know you. I can’t even begin to tell you how awesome it is to get your messages and to learn about your life. I can’t wait to get to go on a hike or run with you. I don’t care what speed you run at or how far you can go or anything silly like that. This is a partnership and it means A LOT to me. So thank you for jumping into it, for being so open with me and supportive.

 

You see, even though my little comment about feeling “slightly inadequate” was meant to not be taken seriously, Emma and I have gotten to know each other well enough for her to discern the underlying feelings behind my words. Emma’s response helped me to remember what being a part of the Running for Rare Team is really all about – partnership. Emma is not at all what I thought I wanted in a community partner. But it turns out that what I thought I wanted was not what I needed. I have learned so much from Emma, and have come to treasure our growing friendship. It’s that connection that is the heart of this Team.

So we may be separated by thousands of miles, but on May 1 we will run together – Emma in Germany, and Providence for me – runners and advocates for hypoparathyroidism and Gaucher disease – in true partnership.

A Different Kind of Courage

When most people think of courage, they think of big acts of bravery, like a soldier at war, a patient fighting cancer, a thrill-seeker skydiving. But I recently read a different description of courage that I really love. To paraphrase: Courage is discovering the truth held in your heart and acting on it. People tell me I am courageous because I climb mountains. Truthfully, it doesn’t take much courage for me to do this. In order to have courage there must be fear involved. I don’t have any fears over climbing mountains. I love the challenge, the exhilaration. Even standing on the edge of a cliff leaves me marveling at the scope of our world – the vastness and immense beauty. But am I scared? Not in the least.

But going inside to examine what is in my heart – that can be terrifying. There is true fear inside there. There are worries, doubts, feelings of inadequacy. All very scary stuff to look at. It’s much easier to pretend these things don’t exist. Or is it? I’ve found that ignoring the scary stuff inside does not make it go away. Instead, it sometimes seems to grow more insistent. Often these fears will assert themselves in more insidious ways. Like, my preoccupation and worry about a friend’s health may have me snapping at my husband for not wiping down the kitchen counter. Or, I might hold tension in my shoulders over a difficult family situation, causing chronic neck pain. Not acknowledging these worrisome feelings will not cure my friend or mend a damaged relationship. It only causes new problems – ones that become difficult to trace the origins of, making it harder to find a solution.

Instead, if I can find the courage to look at these things causing the worry and fear, I can then act on them directly. I become aware that my friend’s illness reminds me of my father’s cancer that took his life. I can now make a distinction between my friend and my father, see that the situations are not the same, that my friend’s outcome is not pre-determined. I can release that worry and fear and be fully present to the events that are happening now instead of paralyzed by the fear of what happened in the past.

It’s frightening to look inside sometimes. I don’t always like what I see. But if I can muster the courage to not turn away, I usually find the experience to leave me feeling lighter, less burdened.

Joint Support

It’s been a fantastic summer! I’ve travelled to Washington, D.C., Nashville, the White Mountains, and I’ll be in the Berkshires (first time at Tanglewood!) this weekend. I started the summer by completing my first half marathon. From there, I engaged in a long, torrid love affair with my new kayak. I put in some new gardens, connected with old friends, went to the beach, got caught in a storm (twice), won at Cards Against Humanity (of course), climbed Mt. Washington (again), got a new dog, saw another child turn 18 and moved my daughter into college (again). Phew! Awesome summer! And there are still a few weeks left!

Here’s what I haven’t done: fundraising. Way back in February, I was contacted by the Arthritis Foundation and given the honor of being made this year’s Central Massachusetts Walk to Cure Arthritis Adult Honoree. http://walktocurearthritiscentralmass.kintera.org/faf/home/default.asp?ievent=1135601

With that honor comes responsibilities, including advocacy, raising awareness, and fundraising. I’m all about the advocacy and raising awareness. I’ve been working in those areas for years, both in the arthritis world and the rare disease community. Fundraising, though, is not my “thing.” I find it awkward to ask people for money, even if it isn’t for me, personally. But it’s really not just about money.

My real hang-up is in asking for support. Because I don’t want to need support. I don’t want to have Rheumatoid Arthritis. I don’t want the pain, the pills, the injections, the doctor appointments, the physical therapy, the sleepless nights, the missed hours of work, missed time with family and friends, the burden of life with chronic disease. I want to run marathons, climb mountains, paddle rivers, travel to new places… and I want to do it all without any help!

But I need help. A wise person once told me that by not asking for help, not only do we deprive ourselves of the support we need, but we deprive others of the opportunity to provide that support. Have you ever had the experience of finding out, after-the-fact, that a friend or loved one has been going through a difficult time, but you didn’t know? My first reaction in that situation is, “I wish I’d known. I would have helped!”

So I’m asking for help. Donate, walk with me, pass the word along. Anything. Everyone is affected by arthritis, either personally, or through a friend or loved-one. You can help here: http://walktocurearthritiscentralmass.kintera.org/faf/donorReg/donorPledge.asp?ievent=1135601&lis=1&kntae1135601=8EAB703BD3D54DAE9B63B455ACA5688F&supId=420249636

The Central Mass Walk to Cure Arthritis happens Sunday, September 13, at the Bancroft School in Worcester from 9am-noon.

Love Endures

Heavy hearts
Cast-off,
Discarded and disregarded,
Hanging from branches.
Roots of grief
Tunneling,
Reaching,
Wrapping tightly.
Unlikely words,
Thoughts unfeeling,
Eyes unseeing
Sadness.

Buds of memories
Reaching,
Casting shadows.
A canopy
Of Love
Endures.

 

 

Chris = cousins, fun, holidays, football in the yard, hide-n-seek, tube socks, J. Geils Band, Connect 4, Space invaders, Mad Libs, dum-dums, those little powdery, pillowy mints, and……..

Our hearts are burdened, our tears seem endless…….. but our Love Endures. Be at peace, dear cousin. 

Mindfulness… Not Just for Running

So, I mentioned in my last post that I am reading a book, Running with the Mind of Meditation by Sakyong Mipham. The book talks about running with mindfulness – total awareness of your self and your body in the moment. I’m hoping that the techniques taught in the book will help me in my quest to complete 13.1 miles. Right now I am learning about the “tiger phase.” In the tiger phase you are striving to be constantly aware of your body posture and foot placement while running. It sounds easy, but try just walking from one telephone pole to another (100′) and think about nothing but keeping your body in alignment and where/how you place your feet. How many steps did you take before things like what to make for dinner or when was the last time your car had an oil change popped into your head? And that was just 100 feet.  I am trying to stay mindful for a half marathon!

Obviously, running regularly is a big part of my training for a half marathon. But I’m also incorporating other cross-training activities, like hiking and biking, into my weekly routine. Yesterday was a cross-training day, so I headed to Mt. Monadnock for my first climb of the season. It was a perfect day: sunny, clear and warm. I decided to tackle a trail I had never climbed before, the Spellman trail. Spellman is rated as the most difficult trail on Monadnock. It’s very steep, requiring scrambles (climbing using hands and feet) in several areas. Weather conditions were just ideal for attempting this climb yesterday, so I decided to go for it.

Spellman was actually a fairly short section (.7mile) of my total climb. From the parking lot I took White Dot to Cascade Link to Spellman. I have been on White Dot and Cascade Link many times… the terrain is very familiar. I let my mind wander while hiking these trails and soaked up the fabulous warmth and sunshine. After about an hour I hit the junction of Cascade Link and Spellman. Time to climb! Spellman starts out deceptively mild but soon turns to near-vertical climbing……

I decided this would be a good time to practice some of the techniques I’ve been studying in the Mipham book, particularly the tiger phase. What better time to be mindful of my body alignment and foot placement? I was climbing on a wonky ankle that I had twisted last week, so I really needed to be careful. I worked to focus my mind on nothing but my foot placement, my balance and body alignment, and, of course, my breath. I managed mere moments of clear focusing before my mind would jump to something else. When I became aware of my brain skipping around, I’d simply refocus on feet, body, breath. When I managed to stay focused I felt completely in control. I knew exactly where my feet were and felt confident in each foot placement. My body felt balanced. I didn’t stumble. When I lost focus I found my feet slipping, or I’d catch my toe on a root and stumble. This would cause me to becoming immediately aware of where I was and what I was doing in that moment, and would remind me to refocus.

The process of being mindful, losing focus, and refocusing caused me to take much longer to climb the .7 mile length of Spellman than I would normally take. I was attempting to consciously think of each step I took before taking it and to check the stability of each foot placement before moving on. It was a time-consuming process, but it allowed me to stay in the moment. I can actually look back in my mind and visualize much of that .7 mile climb as if I’d climbed it many, many times. I remember the smell of the warm rock, the feel of the warm sunshine on my bare arms, the sound of water trickling down sections of rock. I spent only 40 minutes on Spellman out of the nearly 3 hours, total, I spent on the mountain. But it is that 40 minutes that I remember most vividly.

 

 

 

I am Racing For A Cure! http://www.active.com/donate/Racing4ACure/Mamalanson

Running Unplugged

I am super excited to announce that I have been accepted onto the Racing For A Cure team through the Arthritis National Research Foundation! It’s a big deal to me to be able to run again, especially when I had decided that it was something I just wouldn’t be able to do anymore because of my RA. Now it’s an even bigger deal because I have the chance to raise funds for something that affects me (and thousands of others!) on a very personal level. I will be running the Baystate Half Marathon in Lowell, MA this October 19th.

So, the training has begun! I’ve been reading a book…. Running with the Mind of Meditation: Lessons for Training Body and Mind by Sakyong Mipham. The premise is that meditation and running can be combined to benefit both body and soul. Hey, I’m all for that! I’m going to have to learn to run for hours at a time. Not only will it take a strong body to accomplish this, but I’ll need a strength of will, a depth of soul that will help me get to the point where I can run for 13.1 miles. It’s going to be grueling at times, and if I can find a way to build up both my body and my will at the same time, it can only be good. This book aims to help me do just that.

Of course, there is one teeny, tiny problem: I’m supposed to learn to run without music. Whoa! WTF? Music has always been a huge part of my life (I have a really lovely contemporary piano station playing through Pandora as I write this blog). I grew up with a father who was a musician, who played all kinds of music on his stereo in the house all the time. I play music loud and often in my own home, and ALWAYS in the car when I’m driving. And I have to listen to music when I run! Sometimes it’s heart-throbbing, base-pounding rock. Other times it’s fun pop divas with great voices like Madonna or Lady GaGa. Just this past Sunday I ran a 5k road race to music from the show Riverdance (hey, don’t judge!). You know what happens when I don’t listen to music when I run? I have to listen to the horrid sound of my ragged, labored breathing. Yuck!

Yet, that is exactly what this book tells me I should be listening to: my breath. By focusing on the breath, I will be able to be more aware of my body and surroundings while running. It will help to calm the mind and bring an inner peace while running. Supposedly I’ll no longer feel like I’m having to push through running, that it’s some form of torture. Because while I choose to run, I don’t always enjoy the actual act of running. I love the feeling of accomplishment after completing a run. And I really like how running takes weight off me and makes my body leaner and stronger. But the actual running, it kinda sucks! So if ditching the music is going to make me enjoy the running part of running, I’m willing to give it a try.

So this morning I took my first run, sans earbuds. It started out fine….. breathe in…… breathe out…… breathe in….. breathe out….. I think I got 4 or 5 breaths in before my mind started to wander to things like the strained muscle in my left calf, what to make for dinner tonight, what a bummer it is I have to work for game 1 of Bruins vs. Montreal tomorrow night. Whoops! The book says that when the mind wanders, once you become aware of it, gently refocus your attention back on the breath. So I got into this pattern of really focusing on my breathing for a few seconds, interspersed with my very active brain jumping off the track and running all willy-nilly over everything but my breathing. Whenever I’d catch my brain acting all hyperactive I’d do as the book said…. in….. out…. in…. out.

The interesting thing is that I found that I was only annoyed by the sound of my labored breathing when I was not focused on it and was thinking of other things. When I would bring my attention back to my breath, my breathing actually seemed to get easier, less ragged-sounding. And, most surprisingly, I found that I didn’t really miss my music too much. The times that I did miss it were when I was not focused on my breathing. So maybe there is something to this. I can’t say I felt a strong sense of peacefulness after the run, but I know, just as the book says, this will take time and practice.

Over the next few months I’ll continue to blog about my half marathon training. I’m excited to see where this journey takes me. I hope you’ll want to follow along.

For more info about the Arthritis National Research Foundation visit their website at http://www.curearthritis.org/

Please also visit my Racing For A Cure page at http://www.active.com/donate/Racing4ACure/Mamalanson Donations welcomed and hugely appreciated!

Busy, Busy, Busy…..

I woke up just after 5:00 this morning. I didn’t need to. I just was done sleeping, I guess, so I headed downstairs to start coffee and my day. By 10am I had done a load of laundry and baked cupcakes and a cake. By noon the goodies were frosted and decorated, laundry folded, and I’d showered and packed my dinner for work. Then I ran out to pick up my daughter from school and deposit her at her internship. Then back home to write a quick blog post before I head to work. I should get home by midnight.

If you have kids, a job, and a life, you’re probably thinking, “whoop-dee-doo! You just described every day for me!” I know, lots of people have these kinds of days EVERY day! So did I… until 2 years ago, when life as I knew it came to a screeching halt. Gone were my crazy-busy days of housework, shuttling kids around, baking, making dinner, and heading off to work. Instead, just completing one of these tasks became like running a marathon for me. If I tried to do 2 or even 3 things in the same day, I paid for it the next day by being unable to move much beyond getting myself out of bed and onto the couch. It became a huge accomplishment if I could manage to go to the grocery store, haul the goods home, put them away, and spend 10 minutes in front of the stove making boxed mac & cheese for my family. A new level of “normal” was born for me. Over time, I eventually forgot about all the things I used to get done in a day. I was excited when I was able to start hiking again….. even if it meant it was the only thing I did that day, and most often, for the next day, too.

Over the past few weeks, something strange has begun to happen. I have been feeling better and better, and so, without realizing it, I’ve been taking on more and more. I worked overtime both days last weekend…. something I hadn’t done in years. Yesterday I picked up the house, hiked for a couple of hours, came home and showered and cooked dinner, then took my son to hockey practice. While I was hiking, it hit me that I have been doing a lot these days. And it doesn’t leave me feeling half-dead afterwards! I have actually been rediscovering the life I used to have, the one I’d somehow forgotten about, where I am a healthy, vibrant, productive member of society. What a great feeling!

Now, this didn’t just happen. I’ve been working my tail off for 2 years, starting with changing jobs and moving from 3rd to 2nd shift. I have been on countless combinations of medications to attempt to control my RA symptoms. When I felt it was all just too much I hooked up with a great therapist and have been working with her every week for almost a year. And in a sort-of fit of desperation, I started going for Reiki treatments almost 5 months ago (that’s a whole ‘nother blog post!). Finally, things seem to be clicking. The meds are working, I don’t feel like I wanna slit my wrists, and the Reiki is wonderfully balancing and relaxing. I feel the best I have felt in 2 years! And I am sooooooo thankful! At first, I found it hard to fully enjoy all of the good, partly because I was waiting for the rug to be yanked out from underneath me again. But now I realize that I have worked for this good, I deserve this good, and I am damn-well going  to enjoy it!

Tomorrow is supposed to be nice so I’m going to do a bit of spring cleaning around the house, then climb a little mountain before I head to the doc for an appointment on my way to work. Yippeeeeee! I’m so happy to be LIVING again!!!!!

Hoping to Make a Difference

This Friday, February 28th, marks Rare Disease Day. For the past several years I have tried to raise awareness for rare diseases, and specifically Hypoparathyroidism, on this day by talking to anyone who would listen, sending emails, and posting on Facebook. My daughter and a friend even made me “rare disease day” cookies one year, which was fun. This year, I get to do something totally different. I’ll still be talking about Hypoparathyroidism, but I’ll be doing it in New Jersey, at NPS Pharmaceuticals, the company that sponsors my clinical trial.

I am extremely honored and excited to have this opportunity. NPS is a very “patient-centric” company. They want their employees to know just how important their work is to patients. So for Rare Disease Day, they are giving all of their employees a day to connect with patients, hear their stories. For me, it is much more than the telling of my story, though. It’s a chance for me to, hopefully, make a difference. I feel very fortunate to have been able to participate in these clinical trial over the years. They have absolutely changed my life for the better. I’m hopeful that by telling my story, not only will NPS understand how thankful I am, but also be inspired to continue their work. Because, it makes a difference!

Struggles

There’s always got to be a struggle. Sure. What else is there? That’s what life is made of. I don’t know anything else, do you? I mean if there is, tell me about it.

Van Morrison

 

It does seem like life is a constant struggle. With each struggle I am currently working through I think – if I can just get through this, everything will be ok. But just as I get through “it,” life presents the next struggle. I think it’s the struggles, and how we handle them, that make us who we are. Either rise to the occasion and come out the other side better for it, or crumble in defeat. I don’t know a single person who doesn’t have struggles in their life. You could argue that some have more difficult struggles than others – the friend dealing with a burst hot water heater vs. the friend battling terminal cancer – but it’s all a matter of perception. A struggle is a struggle. How you handle it is the difference maker.

24 Hours of Pee(s)

I am forever grateful for the opportunity to participate in clinical studies. I rarely complain about the requirements. Tomorrow I will have to travel in a snowstorm for three appointments at MGH, 90 minutes away on a good day. I don’t care. I’ll get stuck for blood three different times (at least). Doesn’t bother me. I’ll even thank the phlebotomists! It’ll be a long, exhausting day, especially since I’m working this evening and won’t get home to bed until after midnight. Oh well. It’s all worth it. But I just have to say… I really, really dislike 24 hour urine collections!

They’re a necessary part of the study protocol. Every-other-study visit, I am to bring with me a sample from a 24 hour urine collection. One of the complications of hypoparathyroidism is excess urine filtered through the kidneys (hypercalciuria). Over time, too much calcium going through the kidneys can cause stones, calcification of the kidneys, and chronic renal failure. So it’s important to keep an eye on this and adjust medications accordingly. Still, it doesn’t change the fact that it’s a pain in the ass! And, gross! Think about it… collecting every drop of urine and saving it over a 24 hour period. Yuck! I’ve had a lot of dealings with body fluids (and mostly not my own!). For some reason, not much grosses me out more than urine. It’s messy and smelly and, for a girl, not the easiest thing to collect. Not to mention the inconvenience.

I did my collection for tomorrow’s visit yesterday. I started at 6am yesterday morning and finished at 6am this morning. So for 24 hours, I could only go out for as long as my bladder could hold out. Yes, I could bring a container to collect while I’m out. I actually did this once, bringing (and filling) an empty margarine container while meeting my sister for breakfast. But really, who wants to walk around the mall carrying a bucket of pee?

me: excuse me a moment while I dig out my wallet

salesclerk: I think something’s leaking from your bag. Is that apple juice?

me: errrrrrrr, no, not apple juice…………..

So I generally plan domestic duties for pee collection days. Yesterday I did some housecleaning and a lot of cooking. I did venture out to my son’s hockey game early in the evening. And I had to pee by the end of the first period. I was dancing after two periods of play. And when the game finally ended, I was in a sort of urine-induced trance,  concentrating, unable to speak, for fear I may lose control over bodily functions.

And then there’s the middle-of-the-night pee. It happened at 3:30am for me last night. Usually if I wake during the night to pee, I stumble to the bathroom with eyes still closed, don’t turn on the light, feel around to be sure the toilet seat is down and go about it as quickly as possible, hoping not to wake fully before flopping back into bed. There’s no such possibility while urine collecting. I can manage to find the “hat” (the plastic bowl that fits over the toilet seat that you pee into) in the dark and get it into place without turning the light on. But it is absolutely impossible to pour the pee from the hat into the collection jug (which has to be kept on ice, so sits in a cooler beside the toilet) without seeing what you’re doing. Then there’s the business of closing things up, rinsing the hat, washing hands, etc. Yup, fully away by 3:34am. Awesome.

Really, I shouldn’t complain. What’s 24 hours out of my life every four months? I don’t know… I just hate it. Stick me for blood 20 times. Require more frequent EKG’s or bone scans. Make me travel hundreds of miles. No sweat. But I sure will be happy when someone finally devises a Star Trek-like device to scan my kidneys and eliminate the need to collect all that pee!