Forever Young: Autism

“May you grow up to be righteous
May you grow up to be true
May you always know the truth
And see the lights surrounding you
May you always be courageous
Stand upright and be strong
May you stay forever young
Forever young, forever young
May you stay forever young.” – Bob Dylan, Forever Young

 

colin

So, technically, this next post should be about the Richmond Marathon. Maybe that will come. Suffice it to say that it was my slowest finish but the best time I’ve ever had during a marathon. It was an honor to run it with Amy. I’m glad she let me come along for the ride.

I want to go down another road for a minute. I want to talk having a child with autism spectrum disorder (ASD). No one wants to find out their child is mentally ill. No one wants to manage psychiatric visits, consider hospitalization, put their 6 year old on psycho-trophic drugs, deal with IEPs, and school administrators who call to complain because your son did “X”, again. Advocating for my son and finding him resources is my third full time job after lawyering and general parenting. It’s the reality of having a special needs kid.

At first glance, Colin looks like a normal 6 year old boy. Underneath, though, he struggles with expressing himself (he also has a major speech impediment), he fears loud noises, crowds, not being able to have eyes on me at all times, the dark, he hates to be touched by people he doesn’t know, he doesn’t like to be cornered, he won’t make eye contact. Something can be fine and he can be enjoying it only to decide the next minute that he needs to leave RIGHT THAT MINUTE. He HATES deviation from a schedule and if you say you’re going to do something, you had better do it. He won’t eat foods of a certain texture or color. He won’t wear certain fabrics. He hates pants and won’t wear a coat. He reacts to his environment the only way he knows how – he melts down, he hits, he runs. Colin has a total flight reaction. If something is freaking him out, he’s gone. This is dangerous, as you can imagine. He also soothes himself with repetition. It can be physical, like repeating the same motion with his hands over and over or it can be verbal, repeating a soothing noise over and over. He will watch the same show over and over on his iPad because it is repetitive. When he is overstimulated, you can’t rationalize with him, you can’t talk him out of it, you can’t make him stop. His disability impairs his ability to learn and he can’t read or write even at a kindergarten level. Anxiety and depression are Colin’s constant state. He is anxious when he has to go somewhere because he doesn’t know what to expect, he is depressed because he thinks he is a failure. He doesn’t really have any friends. He’s 6 and it breaks my heart.

Here are a few examples of ASD in action: I told him we had to stop at Trader Joe’s to buy avocados on the way home from another errand. He said, “We’re just buying avocados, right?”. “Yes”, I replied. Once in the store, I thought I would like some bread to go with the avocados for avocado toast. The bread is directly across from the produce in Trader Joe’s. It doesn’t require walking to a different aisle. When I picked up the avocados and walked over to the bread, Colin wailed “YOU SAID WE WERE ONLY BUYING AVOCADOS”. I said, “Yes and then I remembered we needed bread too, and since its right here, I just picked some up.” He said “But you said we were only buying avocados.” Me: “I did but now we’re buying bread and it’s okay.” Colin: “It’s not okay. You bought bread” and then he proceeded to cry the entire time we were in the checkout line. To a normal child, this would not matter. I have no idea why it mattered to Colin but it certainly did and it was very real. Another example. Colin only likes yellow cheddar cheese. He only likes yellow cheddar cheese in slices or sticks with a cow on the wrapper (thankfully, there are a lot of brands of cheese featuring cows and he can’t read so he doesn’t know they’re really different brands). We know that yellow cheddar cheese and white cheddar cheese in most instances taste pretty much the same but to Colin he simply can’t eat white cheese in stick form. He eats white cheese on his cheese pizza so go figure.

Colin is a pretty awesome kid. He is very loving to his family. He loves us with undying passion and would defend us to his death. He is empathetic. He also reads me like a book and can tell when I am sad or mad or upset. He feels things in his soul. He tells me he loves me 100 times a day. He gives the best hugs and he tells me I am a good mommy. He has a wicked sense of humor. He can build the most elaborate Lego creations from designs in his head. He knows every Pokemon character ever invented and he can tell you all of their statistics off the top of his head despite his inability to read. He is really good at video games. He never, ever forgets anything you tell him and he is extremely observant. His IQ has been tested and he is intelligent – he just can’t get his intelligence out in a traditional way.

Pic

Colin made this insect for me out of office supplies he found in my desk drawer while I was on a conference call. 

There are people who judge me because Colin melts down in public or watches his iPad when we’re in a restaurant. There are family members who say I lack discipline as a mother or I just don’t enforce my way with him. His school administrators, although pretty good, punish him for his reactions to his over-stimulation at school. I have to leave work at least once a week to pick him up (although, last week we made it a whole week and I felt like I had scaled Mt. Everest). This morning, they told me they will likely suspend him because he hit the vice principal yesterday after he was overstimulated because I forgot to administer his medication. These things make me want to take him home and never leave. For me and him and his sister to just stay insulated in our own little world. His sister has ADHD and, once upon a time, I thought that was the hardest parenting gig. Well, the joke’s on me now. The world is unkind to the mentally ill.

No one knows what causes autism or ADHD. Both my children were premature because I had pre-eclampsia. Was that the reason? Colin was my bonus baby at 39 who came 5 years after I stopped fertility treatment. I didn’t know I was pregnant for a while because I was told I needed IVF to conceive. I thought I had the flu and was dying. I had to have an emergency c-section and Colin was 6 weeks early because his heart rate dropped drastically. He spent 3 weeks in the NICU. Some research indicates that children who spent time in the NICU develop autism. Who knows but I can’t help but feel responsible sometimes. Colin takes a lot of psychiatric drugs. They make a huge difference for him and he is able to function, for the most part, at school and out in the world. I’m grateful we have such strong child psychiatry resources in our area.

Why am I telling you all this? Because very few people talk about mental illness openly. No one wants to admit that their child is mentally ill or can’t read at grade level or gets picked up from school for issues at least once per week. Colin’s mental illness is just as real of a disease as diabetes or asthma. If this is you or your child, you are not alone. There is no feeling of being more alone than being the parent of a special needs child. We’re not alone, though. There are a lot of us out here and I’ve found if I talk about it, other mothers talk about it and then we can offer each other support and share ideas. We can also laugh at the parts that are funny, commiserate on the parts that aren’t and help each other not feel like the world’s shittiest mothers.

When I was at the race expo in Richmond I stopped at a booth for the Speak Up Foundation. The woman at the booth told me a story of a young teenage girl who suffered from severe anxiety and depression and she used running as a way to cope. A few minutes after finishing her first half marathon, she collapsed and died. It turns out she had a heart condition no one knew about. When her parents went up to her room after her death, they found her journal. In it, she talked about how she was depressed and anxious but she felt afraid to talk about it to anyone because she would be judged for not being able to cope. She never even told her parents but she had made plans in her journal to to plan a 5K at her high school called the Speak Up 5K to bring awareness to mental illness and to lessen the stigma. Her parents decided to carry her dream forward and start the foundation that now sponsors charity runners at marathons and encourages people to speak up. I bought a Speak Up visor and I’m going to wear it to my races from now on. I’m also going to speak up about mental illness.

My son is autistic. My son is mentally ill. My son is also a great person with a lot to offer. So, the next time you see a child in public who isn’t acting the way he or she “should” stop for a minute and consider that they may have an illness. The next time you think about judging another parent for the way they raise their children, stop and put yourself in their shoes. Also, if you have a mental illness, don’t be ashamed. I’m beginning to think a lot of the best people do, too.

Advertisements

In the Blood

“How much of my mother has my mother left in me?
How much of my love will be insane to some degree?
And what about this feeling that I’m never good enough?
Will it wash out in the water, or is it always in the blood?
How much of my father am I destined to become?
Will I dim the lights inside me just to satisfy someone?
Will I let this woman kill me, or do away with jealous love?
Will it wash out in the water, or is it always in the blood?
I can feel love the I want, I can feel the love I need
But it’s never gonna come the way I am
Could I change it if I wanted, can I rise above the flood?
Will it wash out in the water, or is it always in the blood?” – In the Blood, John Mayer
de9826215f5f4809ff529c7c9bc311d0
The lyric from this song that rings the most true for me is “Will I dim the lights inside me just to satisfy someone?” Apparently, I will but, only for so long. So, this is deeply personal and not exactly running related but I’ll come back to running at the end. As many of you know and the rest of you may have figured out, my husband and I are separated. I moved out with the kids in January and we’ve been living in a rental townhouse with just the three of us and the two dogs, sweet Pepper stayed with him. My husband is an immensely private person and I don’t want to violate his privacy so I won’t say too much about it. It wasn’t traumatic. It wasn’t some awful thing that caused this. It was death by a thousand cuts over a number of years. We’re still trying to be friendly. It’s hard on all of us but I knew I needed to do this.
To use a children’s movie as an analogy for my life, if you’ve ever seen the movie “Trolls”, I am a Princess Poppy and my husband is a Bergen. Princess Poppy can be a lot to take if you don’t like to sing and dance and throw glitter around. Neither one of us was living as our true selves and it was taking a toll on everyone in our family. Ripping the band-aid off of my marriage was the hardest thing I have ever done.
wjmvnug7lk91shkuur3p
I am coming out, so to speak, because we’ve sold our marital home (finally) and we’re all moving on to the new chapter in our lives. To quote Taylor “we’re never, ever getting back together” so it was time to come clean and avoid the awkwardness of this not being common knowledge. And, in a way, this brings me back to running. Without my marathon training, my Oiselle teammates and my Fleet Feet family, I wouldn’t be in as good of a place as I am right now. My marathon training suffered because I am now a single mother with residential custody of my special needs children who has to cobble together what I can to run but I made it work. I am also perpetually exhausted. My Oiselle teammates have offered invaluable advice and support, as many have been down this road before. My Fleet Feet family and, especially my core group of badass women in the back of the pack, have sustained me. We’ve spent hours running together, all alone, with ample time to talk. They’ve made me laugh. They’ve kept me from crying.
992e82f2e168d93c310cf8a525a7d956
In many ways, being single is easier. I do what I want without commentary (hello, tattoo number 4). I have to do everything but I did everything before and, now, I don’t have to hear any negativity. But, in many ways, it is so much harder than I imagined. Finding out Colin is on the autism spectrum has been heart wrenching and I’ve had to navigate it on my own. Parenting teenage Carly on the daily by myself is harder than I thought it would be. This world is also made for couples. I am 46 and I have been half of a couple for 25 years (although we haven’t been very couple-like for the past few years). How do you do the world without being a couple? I really don’t know. My friend, Sarah, says I am a couple person and I will be one again. I want this to be true.
I’m scared and content all at the same time. This process is much like running a marathon (maybe a 100 mile ultra marathon in the Mojave Desert) because I feel elated and like I am flying (like foolishly running with the 4:45 pacer during Chicago), I have my rage miles, I have many self-pity miles, I have my stubborn AF I’m going to finish this miles, I have my faith in humanity miles with all the support I get and the good things I see every day just like high fiving all the kids on a marathon course and seeing the spectators’ signs of encouragement. Many people who are stronger than me have navigated this course before. So many people have survived the marathon of a divorce. We’re all going to be okay.

Long Shadows: The Chicago Marathon Race Report

AEBA300B-A784-4AC4-A5CB-8DD2ECED22C8

Centennial Wheel

“I’m not afraid of the dark
We’ve been here before
Fallen on hard times, honey
We’ve fallen on swords
But if a long shadow
Falls across your heart
I’ll be right here with you
I’m not afraid of the dark

I’m not afraid of the dark
When the sun goes down
And the dreams grow teeth
And the beasts come out
Cast their long shadows
Every time that they start
I’ll be right here with you
I’m not afraid of the dark” – Josh Ritter, Long Shadows

“When the dreams grow teeth…” Another marathon, another crappy finishing time. I’m not going to walk away, though. I’m already planning my next one. The biggest detriment to my race was the heat and full sun on the last half of the race. None of these things were within my control on Sunday. The things that were in my control, I did well, except for one big one but I learned a real lesson from that one and won’t make that mistake, again. Everyone says, “oh but you trained in the heat and humidity so you should have been fine”. Yes, I did train in the heat and humidity and every single training run was shitty. I knew a hot marathon was going to have an equally shitty outcome but I did it anyway. Me and the heat are never going to be friends but it wasn’t supposed to be hot on race day in Chicago which is why I signed up for it in the first place. I started that race knowing I wasn’t going to like the outcome but #yolo, I did it anyway.

F21C05DB-A166-413A-8EF6-3846B1912BEA

I missed the memo that we were supposed to look scared.

 

First, I want to say that I had a wonderful time in Chicago. I loved traveling with my training group. I loved staying with Heather and Carly. Chicago is a great city with great food and friendly people. I don’t regret a minute of the weekend and I would do it all over again if given the chance, crappy finishing time and all. Second, Carly is the best daughter in the world. She loved the city. She loves my friends. She manned the cowbell corner with my Oiselle teammates like a champ and she cheered on every one of my Fleet Feet friends with a big cowbell at mile 17. My mom and I didn’t get to go on many adventures before she died. I want to take Carly on as many adventures as we can squeeze into my lifetime. Colin doesn’t like adventure (at least not yet) so he stays home, for now. Third, Chicago puts on a great race. It was well organized, the crowd support was great, the aid station volunteers were the best and there was tons of security and medical support on the course.

6A6B264E-2BB3-445B-BB60-1B2BE5352117

River cruise

I’m going to break down the race by sections of miles this time. I’m going to try to remember where I was on the course when certain things happened.

The Start – last corral, wave 3 is not the best start but I’m slow and was honest about my time so this is where I was placed. So were several of my Fleet Feet friends so it worked out. We started 1.5 hours after the first runner. I didn’t love this but it’s a huge race so that’s how it goes. It was cold. We were bundled up. We had to pee.

Mile 1-6 – I had promised myself that I was going to run my own race at my own slower pace and let my friends go. I promised myself I would pace myself. I promised myself I would enjoy the ride. Soooo, I had read somewhere that tall buildings mess with the GPS reception on your watch. I thought this meant it would be a quarter to a half mile off at most. Yeah, no. My watch ended up being almost 3 miles off and it got out of whack right away. With no way of keeping track of my pace, I ran much, much too fast for the first 5 miles of this race. At mile 2 I looked up and I was running with the 4:45 pacer! Oh no! I slowed down and about 7 minutes later, I look up and I’m running with the 5:00 pacer. Still too fast. I really had to pee so I stopped at the first porta potty on the course. So did about 5,000 other people. That would be mile 2 on the picture below. I have no idea what happened in mile 5 because I was still running to fast.  The best part of my watch malfunction is that my Garmin thinks I ran a 6:36 mile. This will forever be in my statistics. I will never better this. I do think the first mile is an accurate representation of my pace which just lets  you know why the rest of the race went so poorly. I really don’t remember anything about this part of the course because I was trying not to die from running too fast and trying not to pee on myself.

D151A0ED-DAA9-4521-A278-F91D8CBBF546

Go home, Garmin, you’re drunk.

Mile 7-10 – One of my favorite things on the course happened between mile 6 and 7 right before the 10K sign. In Lincoln Park, we ran past a retirement home. The residents had put signs in the windows and they were waving. My favorite sign said “I’m missing bingo for this”. Some of the residents were out on the sidewalk and one older woman in a wheelchair high fived me and said “You go, girl”. It helped remind me that there is a time when I won’t be able to do this anymore so I needed to slow down and enjoy the ride. I finally found a reasonable pace through this section. By now, my watch was so far off on pace and mileage I only kept it on for my intervals and for total time. Heather says I could have done the math and figured out my pace but Heather gives Stressed Out Kelly too much credit here. I’m bad at math on a good day. Forget it on a day when I’m running at breakneck speed and trying to remember everything I see. I could only think to follow the people in front of me. Somewhere around mile 9, I ran through what looked like a gay pride parade. These folks were bringing the party. To that point, it was the best crowd I had seen. There were even drag queens lip synching on stage. At mile 10, angels in the form of volunteers were handing out sponges dipped in cold water. I was so hot, I was feeling it and my heart rate was in the high 180s. The sponges were amazing.

C0C98B4B-DABA-452E-B79A-8C25D6512D0E

Drag queens in the middle of a marathon.

Mile 10-13 – At this point, the heat was getting to me but I kept up my intervals and tried to look around. Sadly, I don’t remember much about this part of the course. I think I saw a sign that said “Pick a cute butt and follow it” and the man running in front of me pointed to the woman in front of him and we all started laughing but this could have been somewhere else on the course. There were some stretches where there were no spectators. I kept seeing this very large man in a watermelon themed Hawaiian shirt. I saw him a total of 7 times because he had a bike and kept popping up. I just kept getting hotter and hotter. I ran a great half marathon. If only that was the end. Consistently, everyone I know who ran this race said things got uglier in the second half.

Mile 14-17 – I began to develop a pounding headache. I decided to pound down my electrolyte salt and chase it with Gatorade on the course in the hopes it would clear up. At mile 14, I ran through charity row. A nun on a step ladder blessed me and I took it because at this point I knew I needed all the help I could get. A man was standing in the road with a cold Coors Light and I got really mad at him because it just didn’t seem fair that he was enjoying his afternoon and I was running this stupid race. Then I got really mad at Lady Antebellum when Day Drinking came on my mix because I wanted to be day drinking instead of running that goddamn race. Then, my bluetooth headphones that were SUPPOSED to stay charged for 8 hours DIED so I got really mad at them and drafted a nasty email to JBL in my head about false advertising. I fished my wired headphones out of my pack and got my music back on track. I call these miles my Rage Miles. My Rage Miles turned into my Self Pity Miles as I reached the Oiselle Cowbell Corner. I spent about 2 minutes explaining to Tara and Mary Jo why I needed to DNF this race. I’m pretty sure it didn’t make any sense. They gave me hugs, anyway. Carly was there and I think she was worried about me. A teammate shoved an alcoholic beverage in my hand. I took a few sips, said “fuck it” and went back onto the course. I usually don’t fall apart until mile 18-20 so the heat really hit me hard in this race.

Mile 17-20 – My Self Pity miles continue. I also held on to a little bit of my rage miles at all the spectators trying to cross the course in front of the runners. Don’t do it but if you have to pick up the damn pace. This was the worst race for spectator/runner collisions. I bet Kenyans don’t have to put up with this.  My phone was blowing up because all my friends were tracking me and could  see that the wheels have come off the bus. This part of the course was on 18th Street near the Hispanic section. It was a Mexican street party. They had a band and they were singing and dancing. There was a taco/tamale stand manned by a grandmother. I wanted to stop for tamales. They had cold beer. They looked so happy and I looked so sad. They started high fiving me. I cried for my missed tamales. Rose texted me to ask how I was. I said I wanted to cry. Sarah texted to tell me to keep going and that she was sorry. Kim sent me a congratulations text and I texted back, this sucks. Nora, who I will love forever, sent me a very simple text telling me I was doing fine and to keep it up. I told her I was going to DNF, she told me I would regret it. I told her I didn’t know where I was because my Garmin was jacked so she told me I was almost to mile 20. My headache had cleared. I felt a little better. Nora made a reference to Game of Thrones. I laughed, put my phone away and continued on. Did I mention it was really hot? I helped an older man who had cramps by giving him some of my electrolyte salt.

Mile 20-24 – These were my I’m Going to Finish This Fucking Race Even If It Kills Me Miles. At this point, a real shout out needs to go to the Chicago Fire Department. All through the course they had used their fire trucks to block the side streets. They had also put out these giant water trucks with misters. At mile 21, they had managed to cover the entire street and a cool mist was engulfing us all. They lined the street and high fived each runner. A female firefighter gave me special words of encouragement. These were also the miles where there wasn’t a kid on that course who wanted a high five who didn’t get one from me because this is supposed to be fun.  I also passed a tent manned by the From Fat to Finish Line team, I high fived all of them and they shouted words of encouragement. I teared up a little. This fat runner girl loves a fat runner success story! You want to know what the most demoralizing thing in the world is during a marathon? For your Garmin to be so far off on mileage that it beeps for mile 26 but you know you are only at mile 23 and change. Chinatown was a blur around mile 21 but I must have taken a picture because here it is.

0028876E-8C9E-4275-88FE-713184A74ABE

This was a blur.

Mile 24-26 – These were my Walking Dead Miles. Between mile 24-25 there was a woman standing in the median yelling “Today is not your day to quit. You will finish this race.” She was giving out high fives like it was her full time job. I must have looked like shit because she gave me a hug and said, “you’ve got this, girl, you’ve got this”. At this point, my fellow runners began to drop. I saw a man go down right in front of me. He was in so much pain, he couldn’t speak to tell us what was wrong. He was clutching his leg so me and two other runners tried to rub it for him. I hailed a policeman who came right over and immediately called for an ambulance. A few minutes later, I saw another woman go down from exhaustion. We helped her up and she started walking again. When you are out on the course for as long as I am, you see people who are really suffering. The heat was getting to so many people. I saw the watermelon shirt man at mile 25 and I thanked him for keeping me company. I could see the big screen projecting the messages from loved ones way in the distance and I knew it was mile 26. I picked up my pace. I ran.

Mile 26-26.2. – This was my Holy Shit I Can’t Believe I Made It two tenths of a mile. At the big screen we turned right to an uphill finish. Uphill? WTF – oh yeah I read about this but totally blocked it out. Up the hill we all went, as fast as we could which wasn’t very fast but it hurt. We rounded the corner and there was the finish line, still too far away. I ran as fast as I could. I crossed the finish line and thought, that fucking sucked. The chute was the longest chute I have ever been through at a finish. It took forever to get our medals. I texted Carly I was done and still alive. I picked up my gear bag, grabbed my free beer (security dude made me toss my beer before I could go out of the fence), grabbed  a bag of ice for my cranky hip and made it to my friends who were under the F for Fleet Feet in the family area. They all looked exhausted but they had waited for me. We had all made it even if it took us much, much longer than we wanted.

B61A63D4-FD0F-445A-9F58-35A7C117FA57

Proud of this crew!

Lessons learned? I need to do some drills where I run without my watch and time myself to go by pace. This was the biggest mistake I made. I went out way too fast on a hot day with a lot of race left to run. I can run pretty fast but not for 26.2 miles. I choked down more G2 than I wanted in the 3 days before the race and on race morning. This saved me on a hot course along with diligently drinking Sword during the race and refilling my water bottles (thanks to the aid stations for having jugs of water to refill bottles). I carb loaded a lot. I ate all my gels on the course. I suffered no stomach issues. I took the sponges and soaked myself. I packed ice into my sports bra and then chewed it (gross, I know). I poured cups of cold water down my back. I took Gatorade at every other aid station. I’m convinced this is how I made it to the finish.

I’m not proud of my time. I’m proud of my grit. Every one of my Fleet Feet friends struggled on that course. Few of us made our time goals but we should all be proud of finishing. We got every runner in.

Fix You

“When you try your best but you don’t succeed
When you get what you want but not what you need
When you feel so tired but you can’t sleep
Stuck in reverse” – Fix You, Coldplay

Need this coffee ☕ mug!

I’m on the struggle bus. I never really get off these days. I don’t know what I was thinking gleefully agreeing to take a chemotherapy drug to treat my RA right before training for a marathon. When I went on the meds, I googled “marathon training on methotrexate” and found nothing on it. No medical websites, no blogs. You know why? Because I don’t think people do it!!! In hindsight, it makes sense but in my ever positive, stubborn mind, I thought, “oh, it will be fine, running is always fine”. Not so much.

It has caused rapid weight gain (and despite my #margaritaFriday posts, I am not eating poorly enough to justify this gain). Turns out it is a side effect. I get dizzy when I stand up too quickly (or run too fast, apparently). Side effect. It causes heat intolerance and I’m running in the middle of a hot Southern summer. The absolute worst? The nausea I feel for about 48 hours after I take my weekly dose. Did you ever have morning sickness?It’s like that. I either don’t eat at all or I eat carbs because it is all I can tolerate. I take my dose on Wednesday and I feel like crap for all of Thursday and  I finally start to feel better around noon on Friday. And don’t get me started on the chronic fatigue and the fact that my hematorcrit went from a barely acceptable 12 (not good for runner) to an anemic 10 since I started this medication. The one good thing is it made a tremendous difference in my joint pain. I can actually walk to the bathroom first thing in the morning without hobbling like a 90 year old.

So, guess, what? I am done. I’m not taking another dose. The joint pain wasn’t fun but it didn’t affect me while I was running – only after. The side effects of my medication are disrupting my quality of life. I have no idea what is next. I’m already on the next level up of meds to treat RA after my first line med quit working. We’ll see what my doctor says.

You know what else doesn’t work? The Weight Watchers Smart Points plan and marathon training (Points Plus worked and I’m still pissed they changed it). Now this one doesn’t come as a surprise to me because I googled “weight watchers and marathon training” and got a lot of hits. All the blogs I read said the plan just isn’t made for endurance athletes so they all went off the plan during training. It penalizes healthy fats and complex carbs too much. Hummus has more points than a bag of chips out of the vending machine! I figured I’d give it a try and see how it worked out. I really don’t know what I was thinking. I think I was thinking that I was upset about the weight gain from the medication and I was going to see what happened. I’ll tell you what happened. I was starving and I’m pretty sure I was screwing up my metabolism with all the running and inadequate fueling (like I haven’t already screwed it up with my disordered eating and my yo-yo dieting). So, the Smart Points plan is going the same way as the methotrexate – far, far away from me. I’m not really sure what I am going to do. I do need to lose the weight I gained from the meds but you know I am not aiming to be model thin. I’ve tried My Fitness Pal and I’ve tried eating out of those runner cookbooks like Run Fast, Eat Slow (I’m talking to you Superhero Muffins that made me gain weight) but didn’t lose a pound. I think those runner meal plans are made for people who don’t sit at a desk all day and maybe run faster than a 12 minute mile in a marathon. I’m sure it works great for Shalane but it doesn’t work for 45 year old moms who are really slow marathoners. So, I made an appointment with a nutritionist. When I was being treated way back in the day for my disordered eating, I was forced to go to intensive outpatient therapy and see a nutritionist. I hated it because I was a stubborn pain in the ass and thought I knew better than all of those people. Let’s see if I have changed any in 26 years. I’ll report back.

Rough week More

So, what’s next? First, I have to run 6 miles on the treadmill when I get home because Heather and I met early this morning to run 16 miles on the ATT but I only made it 10 before I felt like I was going to barf. I felt like I was going to barf because I didn’t eat dinner last night because I felt like I was going to barf and I didn’t eat breakfast before the run because I felt like I was going to barf and I didn’t take in nutrition on the run because I felt like I was going barf and it was during this run when I decided I was no longer going to take that crappy methotrexate. Side note: I’m not just discontinuing the meds for my running – it is also making me a horrible mom because all I want to do is lay on the couch and I am letting my kids eat Pirate Booty for dinner because the thought of cooking food makes me want to barf. Thankfully, I currently feel less like barfing so me and Thomas Shelby are going to keep that treadmill date tonight (extra credit if you get that reference).

Second, I’m going to try to salvage this marathon training season by actually eating real food and by going off the chemotherapy drugs. I haven’t really been able to struggle through any of the total miles I am supposed to be hitting on my long runs. There are so many reasons for this – the weight gain, the meds, the heat and humidity, my anemia and I’m just fucking exhausted. I spend a lot of time on the pace calculator website entering in paces for worst case scenario outcomes at the Chicago Marathon. Even in my worst scenario, I still finish so I think it brings me some level of comfort. (Yes, I bought the Worst Case Scenario book back in the ’90s and I memorized it. I know what to do if I encounter a grizzly bear or my car goes over a bridge into a frozen river. When the zombies come, come find me – I’ve got you covered and I have hoarded a lot of bottled water in my garage along with La Croix because you know I’ll be high maintenance even in the end times but I hope you have some camping gear because all I have is 1000 thread count sheets.)

A really good thing that has happened is I have switched to heart rate training. Kelly, one of my Oiselle teammates, graciously offered to reconstruct my training plan to be more heart raced based. I am really loving it. The long runs are getting easier when I am not married to hitting a certain pace. I’m keeping an eye on my heart rate which is causing me to slow down and it works. My strength training is also really, really working. I am finally using my glutes to power my running instead of my quads and my body is happy. I am not falling apart (at least from a muscle standpoint) at the end of my long runs. Tyrone is my hero for getting me to where I am today.

Why did I tell you all this? Because when I tried to find this information on the interwebs, all I can find is advice that doesn’t suit me. I’m a fairly untalented runner trying to run marathons with a chronic illness, a non-runner body and an unorthodox approach to running by doing run/walk intervals.  When I can’t find what I want to know, I just do it myself. I’m not an expert but I’m honest. We still have a lot of weeks left in this training cycle so hang on and let’s see if it gets better. I’m on Plan C now and we’ve got a lot more letters in the alphabet. Meanwhile, there is this….

Dear life: whatever, motherfucker. Whatever.

The Climb: Coming to Grips with RA

“There’s always gonna be another mountain
I’m always gonna wanna make it move
Always gonna be an uphill battle
Sometimes I’m gonna have to lose
Ain’t about how fast I get there
Ain’t about what’s waitin’ on the other side
It’s the climb” – Miley Cyrus

at some point you just have to let go of what you thought should happen and live in what is happening.:

 

Yes, I know this song was featured in a Hannah Montana movie and I’m okay with that. Carly loved her some Hannah Montana back in the day.

I spent the spring since my last marathon training for a half marathon. I didn’t set any PRs and I struggled mightily. One really apparent thing during spring half training is that I was in some serious pain after every long run and every morning whether I ran the night before or not. My training partners are all getting faster and I’m getting slower. I emailed by Ironman Rheumatologist and he ordered some more tests, blood and x-ray and an ultrasound of the joints in my feet. The bad news is that my Rheumatoid Arthritis is getting worse. The swelling in my joints can be seen on the ultrasound. I’m hobbled if I sit for too long or get up too quick in the morning.

I saw my doctor yesterday. I was dreading the appointment. I knew it wasn’t going to be good news but I’m in pain, y’all, so I went. Rob is a great doctor and a good guy. He is pragmatic but honest. We went through the options. I told him training for Chicago starts on June 17. He sighed. He said we’d been avoiding the higher dosage drugs because I didn’t want the side effects. He said I wouldn’t be able to train for a marathon on what I was currently taking. I made the difficult decision to begin taking methatrexate. It’s a chemotherapy drug. It’s given, in higher doses, to breast cancer patients. In folks with RA, it’s given in lower doses but packs a list of side effects, most commonly nausea, that are longer than I like. I have to take folic acid every day. I have to take the methatrexate every Wednesday. I won’t feel relief for 8-12 weeks but training starts before then. He told me I’d have to gut it out until then. I’ve been gutting it out since before Kiawah. I’ll just do it because I’m stubborn AF and it’s what I do.

The worst part? When he handed me my after visit summary and I was walking to the lab with my orders for three more vials of blood for more tests, I looked down at the paperwork and saw he had coded my RA as “moderate” and no longer “mild”. My mom had a very serious autoimmune disease and, through a series of mishaps, that disease eventually took her life much too early. My dearest, oldest and most special friend’s mom (my second mom who I had known my whole childhood) died from complications of RA. I am really good about taking my kids to specialists, chasing down diagnoses for them and getting them all the help they need while pretending like I’m fine. I told the kids mom was going to be taking some nasty medications and we were going to have to band together in our little pre-existing condition world and hope for the best.

Rob asked me if Chicago would be my last marathon. I told him we’d have to see what the future holds. If the new meds work, I’d like to keep doing this with the recognition that there will be a day when I can no longer do this and that day may come before I can run another marathon. It may come later as I still have a couple of marathons on my bucket list. Am I deluding myself? No. I like to think that I still have this thing called “hope” and, despite the really crappy things that have been happening in my personal life and this new escalation of my disease, I need to be positive because with no hope there is only despair and that just isn’t my style.

So, here’s to the beginning of another marathon training cycle. I’ve started regular work outs with a strength coach. I like him. He makes me push myself and he is a fabulous cook and has inspired me to get back on my homemade eating kick. Training should help me get to the starting line with no injuries, it should make my running more efficient (which hopefully means a new marathon PR) and it helps build up my muscles to take some stress off the joints in my feet.  As always, I am so grateful for the wonderful people in my life. We’re going to make this work.

Getting Inside My Own Head — The Aloha Files. What happens when a mental panic starts to take over and how to overcome it before a race.:

Nobody Knows: Reflections on Marathon #3 and What’s to Come in 2017

“Nobody knows how the story ends

Live the day, doing what you can

This is only where it begins

Nobody knows how the story ends

Nobody knows how the story ends.” – Nobody Knows, Lumineers from Pete’s Dragon Soundtrack – STOP WHAT YOU ARE DOING AND LISTEN TO THIS SONG!!!

Nobody knows how a marathon will go until you are running it. Kiawah went about how I expected up until mile 17 and then things started to quit on me. Nothing too bad, nothing I couldn’t deal with but issues all the same. I finished. I didn’t end up getting IV fluids in the medical tent  and there was no puking so we’ll consider it a success. I’m not thrilled about my time and continue to feel like I’m not a real runner because I can’t run a decent time (I make rules for myself that come from some weird place of inadequacy within myself but are not based in logic. I use logic all day at work but rarely in my own brain when it applies to myself, so go figure). I was thrilled with the company – there couldn’t be better training partners than Jessica and Melody. I wouldn’t trade them for anything. Sadly, neither of them is ever planning on running a marathon, again, so I am on my own for anything over 13 miles from here on out!

kiawah-crew

Our Fleet Feet group 

Kiawah would be a terrible marathon for a first time marathoner who didn’t have company. The course is sparsely populated, there is nothing but a lot of marsh grass to look at and the only thing you can speculate about is the cost of the houses on the island and what people must do for a living in order to afford $8 million beach houses that aren’t even on the beach. Melody and I talked and talked and talked some more – we’re really good at talking and never run out of things to say. I won’t do this marathon, again, but then, I don’t plan on repeating any of the marathons I’ve run because, if I’m going to run 26.2 miles, I want it to be somewhere new. I’m considering running the half at Kiawah this year because Melody already signed up and I will follow Melody wherever she goes because I love her to the moon and back and because we think we can hit the magic half time we’ve told each other we want to beat (we’re too scared to say it out loud right now)!

kiwah-mel

We earned these beers. We also took two more in the car back to condo and I drank mine in the shower. Shower beers are the best! 

As most everyone knows, I got into the Chicago Marathon via the lottery for October 2, 2017. I’m excited but I wonder why I keep doing this. I’m 99% sure my body isn’t cut out for marathons so what do I do with that information other than continue to ignore it? As many of you don’t know, I was diagnosed with an unspecified autoimmune disorder about 3 years ago. Basically, it meant that I had some sort of autoimmune disease but it wasn’t severe enough yet to tell us which one. All the women on my mom’s side have some sort of autoimmune disease so I wasn’t surprised. Well, in 2016, my body decided to tell us which one – I have Sjorgren’s Syndrome and Rheumatoid Arthritis with Raynaud’s Syndrome as a symptom of the first two. The Sjorgren’s caused me to lose almost all the hearing in my right ear because my antibodies attacked the nerves in my ear when I had a bad cold. I also got a salivary stone in my salivary gland which is a key symptom of Sjogren’s. It was fun, just like a kidney stone. The Raynaud’s makes me completely unable to tolerate severe cold and my fingers and toes turn completely white and lose all feeling. It is one of the freakiest things you will see – Carly says I have “cadaver hands” when it happens. The RA is causing joint pain and stiffness. The stiffness is so severe that it takes a solid hour hobbling around in the morning before I can walk normally and the knuckle on my left hand is constantly stiff. I take a very mild medication that only sort of helps. The next level up medication has a lot of side effects I don’t want to deal with. As long as the pain is manageable with what I currently take, I’m not bumping up to that next level shit. We won’t even talk about the chronic anemia associated with autoimmune disease and the fact that my primary care doctor told me to eat liver with a straight face.

My Rheumatologist is an Ironman. I picked him for this reason. I figured (correctly) that he wouldn’t tell me to stop running because he would fundamentally understand why extreme sports make smart people do stupid things. He laughed when I told him I assumed that the stiffness was just related to running. He told me I had been running marathons for years now and, unless I was trying to run like a Kenyan (I’m not), this level of stiffness was far from normal. At my last visit, faced with a flare up two weeks before Kiawah, he looked at me and said “You can keep running marathons if you want but understand that there will come a point when you will no longer be able to do it. When will that be? When you decide the pain outweighs whatever benefit you get out of doing this. Until then, just keep running. You’re the only patient I have with RA who runs full marathons.”

Armed with that knowledge, I promptly entered the lottery for Chicago and the odds were ever in my favor. I’m just going to keep doing this until I can’t do it anymore. I made some mistakes in training this past season-I lost some weight which I needed to do but not this way (because I wasn’t eating for several months – see, prior post about eating disorders), I bailed on my strength training routine, I suffered from really severe insomnia with about 3-4 hours of sleep per night for months on end, I quit committing to speed work. Lucky for me, I had built up enough of a foundation of excess fat, muscle and residual speed to get me  and my usually unhappy hip/SI joint through Kiawah. I still question my commitment to my sport. Then, I look at my life – a full time attorney with two special needs kids who handles 95% of childcare and household issues and whose life is about to get a whole lot more real (not being intentionally vague – just not ready to go into detail) dealing with RA and an unhealthy body image and I think that maybe my marathon time is as good as it gets. I still finished, right? Everyone who knows me knows I’m not going to settle for that. These are not excuses. They are shit to be dealt with, managed or handled. They are hurdles to jump on my road to finally getting this right. What does “right” mean to me? I don’t know but I’ll tell you when I figure it out. An under 5:30 marathon? A sub-9 minute mile? A new half marathon PR? Nobody knows. Least of all, me.

kiawah

My race day mantras. One courtesy of Oiselle and the other I had custom made on Etsy

So, armed with a new color coded, tabbed, sticker adorned training journal, a new Fleet Feet training season, a packed race calendar for the entire year, the Chicago Marathon training plan already penciled in on all the days from June until October 2 and a renewed commitment to strength training so the muscles on this old tired body can take the pressure off these aching joints and a hearing aid in my right ear, I am ready for this crazy trip, again.

journal

If only you could see the beautiful stickers but it will never be as awe-inspiring as Torrie Edwards’ training journal. She is the Queen of journal making. I bow down in her presence. 

Rise Up: Richmond Half Marathon Race Report 

“You’re broken down and tired
Of living life on a merry go round

And you can’t find the fighter

But I see it in you so we gonna walk it out

And move mountains

We gonna walk it out

And move mountains

And I’ll rise up

I’ll rise like the day

I’ll rise up

I’ll rise unafraid

I’ll rise up

And I’ll do it a thousand times again

And I’ll rise up

High like the waves

I’ll rise up

In spite of the ache

I’ll rise up

And I’ll do it a thousands times again” – Andra Day, Rise Up

I chose this song for a reason. Hillary used it during her rallies. When we saw her in Raleigh with the Mothers of the Movement, the mothers joined hands with Hillary at the end and raised their arms high. If there is anyone who rises 1000 times, again, it’s those women. The song resonates with me. Everyone is weary but not everyone rises up. I’ve been listening to it on repeat a lot in my car.
I felt raw this week. I’m not going to pretend a lot of it doesn’t have to do with the election but there are other things, too. If you don’t understand why I’m gutted about the outcome, I’m probably not going to be able to explain it to you. If you completely understand why I’m gutted, you’re my tribe. It goes so much farther than my candidate not winning. So many Americans rejected everything I stand for and voted for everything I don’t. Y’all voted against decency. Everyone always thinks their point of view is the right one but I just don’t understand how you can not think equal rights and acceptance for everyone is not a good thing. It isn’t even about Hillary losing it’s about what won. It’s about the fact that half the country voted for misogyny, racism, xenophobia- for a man who publicly stated you have to treat women like shit.
My life, much like my running, is about relentless forward motion. I feel like we’ve stagnated and that doesn’t sit well with me. A lot of people tell me I’m resilient as fuck. That I take things in stride. Make no mistake, I’m not resilient because I don’t feel or I don’t care. I’m resilient because I feel too much and I get hurt and I rise up and let myself feel again. When you come into my life, I love you. I love the people in my life with ferocity and I believe in so much good. Oftentimes, this leads to getting hurt but resilient people move in a relentless forward motion despite the risk of getting hurt, again. I never half ass anything. I whole ass it all. I go all in during the first couple of hands. Sometimes it really hurts and a lot of things hurt right now. There are a lot of things to be grateful for in life and I’m just going to have to focus on those. Nowhere is my gratitude greater than for my female friends. There is nowhere else in this world where I can turn for the strength, love and acceptance I get and give amongst these wonderful women. Women are the strongest and most resilient people I know. We don’t really have any other choice and this week reminded us of this in the most painful of ways. I’m also very grateful for my running family. I’ve met the best people through running.

Which brings me to Richmond. I came here because the Fleet Feet group was running this race and I love these people. We’ve run together all season (many of us have run together for years) and they’re achieving their goals. After the election and some serious issues with Colin this week and some other bullshit in my life, I wanted to run so hard I couldn’t feel anymore. Marathon training is winding down, getting closer to the big show, and I’m tired. I haven’t raced a half marathon this training season and I wanted to see what I can do. I wanted to put in my headphones, blast the music until I couldn’t feel a fucking thing and run free. 13 miles should feel easy after all the long runs. I wanted to PR but only told two people I was going for it before the race. You never know how it’s going to go until you get out there. My PR is 2 years old and I hadn’t been able to come close to it in well over a year.

Sleeping with kids

Apparently, this is what I look like when I’m really cold.

I brought my kids with me to the race. Carly is a great race spectator and she goes all in with the sign making and the cowbell. Colin has only been at the finish of one of my big races. I wanted my own cheering squad plus my Fleet Feet family knows my kids so I knew it would be okay. We woke up at 5 (after about 3 hours of sleep for me because sleeping with children sucks) and headed out into the cold. Damn, it was cold. I couldn’t make either the Fleet Feet group team picture or the Oiselle team picture because….well, kids. I situated them on a very populated corner surrounded by police and headed down to my corral. I ran into my Oiselle teammate, Michelle, which was such a much needed boast. Did I mention I was cold?

Soon enough the half started and my corral crossed the start. I saw the kids right at the start but it was still too crowded to be moving fast. I wore my watch for my intervals but I decided not to look at my pace during the race. I decided to run by feel. Once the crowd thinned a bit, I hit my stride. Judging by how many people I was passing (my corral had an estimated finish of 2:30) I was pretty sure I was running faster than the the folks in my corral. I flew past the 2:30 pace group. It was a harder than normal effort but I felt good so I kept going. By mile 4, I could feel my hands again so I ditched my gloves. I normally don’t race alone but it was just what I needed yesterday. Running felt wonderful and mentally, I didn’t doubt myself  once on that course.

This was a beautiful course. Richmond is a pretty city and the crowd support was great despite the cold. I smiled and laughed at the signs. I high fived all the kids. I thanked the volunteers. By about mile 5, I felt really happy and had a runner’s high. Maybe, things weren’t as bad as they seemed. Runners are the best people and everyone was so happy. The spectators were happy, the volunteers smiling. Many neighborhoods set up their own aid stations and were out on their lawns playing music and dancing. Mile 9 had beer so, of course, I took one! My pace started to hurt by mile 10 but I didn’t doubt I could do it so I kept pushing. Tom, a Fleet Feet friend, caught up to me and we ran a bit together. It was nice. I knew the Oiselle Cowbell Corner was at Mile 11 and that the kids were between Mile 12-13 and it was mentally great to have something to look forward to for pushing the pace. My pace fell a bit between miles 10-12. My Beats headphones decided to suddenly disconnect from the Bluetooth on my phone so I stopped to fix it. Apple, you really need to improve those damn things. I also stopped for hugs at the Oiselle Cowbell Corner. I saw the kids between 12-13. I tossed Carly my water bottle and said “I think I’m going to make it” she said “Yes, you are! Go, go!” because she had gotten my Mile splits via text and knew my pace.

The finish at Richmond is an epic quarter mile downhill. The streets were lined with spectators. People were yelling for the runners and music was blasting. I ran as fast as I could down that hill and it felt like flying. It was the best finish, ever. I saw the time on the finishing clock but I didn’t know what time I’d crossed the start mat. I stopped my watch and when I looked down, I saw 2:24:26. A PR of over 2 minutes. Sustained paces I haven’t been able to hit in over a year. So, yeah, I cried a little. Tom congratulated me and we got a photo. I headed back up that epic downhill (ouch) to reach the kids at the corner to cheer in the rest of our Fleet Feet crew.

I’m a terrible selfie taker

The kids and I were joined by Jill, Dana and Josh and we cowbelled for all of our Fleet Feet runners who were still out on the course. We saw all of our marathoners come by. Everyone had a great day (many of us PR’d) on an amazing course on a beautiful day. We rang the PR bell!

Carly is the best spectator


I ran my best race and I did everything right. I’m not going to get overly confident because I have the Kiawah Marathon in 27 days and the marathon can be a grueling death march. I have no idea how it’s going to go but I know Melody will be by my side and our Fleet Feet crew will cheer us in. All that is certain is yesterday went better than I expected. I struggled to come back after the Marine Corps Marathon and I didn’t know why. My spring race times were not what I hoped for and I feared I wouldn’t get it back. I needed yesterday. I feel renewed on so many levels. Is Trump still going to be President? Yes. Is my life still full of bullshit? Yes. But, for two and a half hours yesterday (and the rest of the day) none of that mattered. All that mattered was running and taking it all in. I feel better prepared to deal with all the crap. They say if you want to renew your faith in the human race, go out and watch a marathon. It’s true, and that, my friends, is why I run.

Sissy, ringing the PR bell

Only part of the crew