How I came to run a marathon in a record. . . SIX HOURS ;)

Today's entry is for my fellow Zebras. In my story I talk a little about my struggles with EDS. As I continue to manage my disorder through running, the episodes continue to be fewer and farther between. But there are still the emotional struggles of the past. I find myself becoming very emotional when I complete a difficult run that is painful. Last week was a bad week for EDS pain. As you zebras know, this disorder is so lonely and isolating. As 50% of the genes are passed down to the next generation and the other 50% mutate, no one with EDS experiences the same struggles or pains.

I watch a lot of movies while I work sewing for for my custom window treatments business. It helps keep my mind occupied from other damaging thoughts. . .  This past weekend I watch "The Theory of Everything," about Stephen Hawking's life. I was very excited about this movie because I read A Brief History of Time when I was only a Sophomore in high school. This was a recommendation from a science teacher who recognized some talent in me in the area of science. I devoured the book! It was fascinating. Unfortunately, my science abilities had peaked at the high school level and I did not do as well as I had hoped in college. But I still experience a sort of frenzy at the topic of astro physics, not that I have much to contribute. So I was very excited for this movie.and to understand what he went through on a more personal level. It was devastating and quite overwhelming. At one point in the film he attempts to get upstairs and is sort of "stuck" part way up. His infant child is at the top of the stairs just looking at him. It reminded me of the night I had a slipped disc in my back and was stuck in position halfway getting off the couch. It was the worst pain I'd ever felt. I yelled for my three year old to get my phone, but he didn't know what to do or where to look. I was just stuck like that for hours until my husband came home from work, my son, all the while, at my feet sobbing. I broke down when I saw this scene. I guess because it is so lonely in that moment. No one knows what it feels like and no one can help. You just have to go through it alone. And then you suffer a sort of PTSD afterward as you recall the pain when you do certain motions or movements. And you can't say anything to anyone. you can't just say, "Sorry I was out of it for a couple seconds: I was having a flash back." You just have to live with it. Alone. In your own head.

When I run and I remember that night, I get very emotional. Or when I remember the night I dislocated my hip while pregnant with Miriam and it was dislocated for three days. I remember those pains and my back and hips seem to remember them too. As I continue to move forward, I sometimes find myself weeping. I suppose I find myself like this because, again, I am all alone. No one felt what I felt and therefore, no one know what it feels like to conquer it.

I do want everyone with EDS to be able to have days free of dislocation, free of subluxing, even free of pain sometimes! But the conquering moment can be very frustrating. Running down the street can either be our Hercules moment, or our Icarus moment. When you succeed, you will feel on top of the world and want to share this joy with others. But often times it ends crying alone because you are the only one that understands. And that is okay. The achievement is still satisfying.

The point I am trying to get at, and failing miserably at as I go off on many tangents, is that someone you run a race with will run it 1/10 of the time it takes you to complete it. However, conquering not just mileage, but an entire life consuming disorder is worth ten medals that the person who got there first receives. You will cross the finish line, crawling, crying, broken and in your head it will be as though you were first and with record time. But unfortunately, it will only be that way to you. And again, this is still satisfying, but it is a very lonely victory.

The victory is not in crossing the finish line. It's in making the choice to race. It's in the training. It's in the failing and getting back up again.

My point is that life is a battle. When I crossed the finish line of the marathon at over six hours, it seemed to everyone else watching that I was the last person to cross the line. But in my mind I had gone 26.2 miles from that couch in my house where I was stuck for hours waiting for my husband to "save me." In crossing the finish line, I saved myself. I had taken charge of my life.

As I crossed the finish line, vendors were already packing up. The booth that engraves your medal with your name and time had already closed. The bands had all packed up and left. The medical tent was already loading up a truck. And all the while I was alone in my head thinking that if anyone around me knew the first thing about my struggles, the bands would still be there, the vendors would all be there, and the finish line would be packed with spectator's cheering. It was a victory what I had achieved. But it was one I had to experience alone. There was no one else there. But in my mind, I remembered the day I was stuck on the couch with a slipped disc, the days I couldn't get my infant out of her bed when she woke up, the days I had to kneel on a pillow and pull/slide myself around the house to get around because even supporting myself on a cane was painful. . .  And I won! I beat that. I crossed the finish line on my feet. It was 26.2 miles of war. And I won!

EDS is so lonely and isolating. Don't make it more lonely and isolating than it has to be by trying to manage it with pain meds and then losing yourself in those. There is no medal at the bottom of a pill bottle. There is no victory in a prescription. There is only you. And if it takes you all day to cross the finish line, and you have to hobble across it because you dislocated your shoulder at mile 22, and when crossing no one is there to share your joy and excitement, I can guarantee you right now that that moment is better than any momentary satisfaction found in prescription medication.

Be victorious. Even if victory looks like this:

So busy, but still at it!

The holidays are always a busy time of year, whether you work or not. On top of it already being a busy time of year, my birthday falls at this time and it is the busiest time of year for my business!

A LOT has happened recently and I want to update on a few major things. These things have contributed to my running, so I want to share them. They are personal, Just an fyi. Extremely personal. But it is my life. It has made me who I am. It has fueled everything in my life I am passionate about. And some people aren't going to like what I have to say. So you can leave now if you are "sensitive."

I went to the temple for the first time in four years. For anyone not LDS, this is a place we go to to do work for our ancestors who have passed on. We go through once for ourselves. Here we make promises and covenants to Heavenly Father. We are supposed to live a certain way and a certain lifestyle to be able to go into the temple. The lifestyle we live ensures we are ready to make and keep the promises we make there.

I had been having a lot of negative feelings towards my husband that were residual from an incident with his sisters a few years ago. It was that single incident that made me not want to go to the temple. I trusted his sisters with my work and my business. And they failed. They disappointed. They didn't hold up their ends. They were a miserable disappointment to me and I learned that day that they can't be trusted or counted on for anything. I trusted them. And their betrayal hurt me so much that I couldn't bring myself to go to the temple. This is because to this day they are not right with me. Before we enter the temple we are asked a series of questions about our personal lives and lifestyles. One of them is "Are you honest in your dealings with your fellowmen?" I knew for a fact that one of his sisters was still attending the temple even though she had kept funds for work she failed to come through on. I understand that she was under the impression (because of my husband) that her debt was forgiven, but she is not right with me. She has not been honest with me in not returning the funds for work not done. Additionally, she has never accepted responsibility for being completely unreliable and untrustworthy towards me. I trusted her to come through for me during the busiest time in our business and neither of them could fulfill their agreement. Neither has accepted responsibility.

I was disgusted. My attitude toward the temple became very negative as I wondered how many other people went in who had been dishonest. I also thought that eternal life as a Laymon just sounded cruel. I didn't want to be related to these people that would treat another human being that way. I sought the counsel of my bishop and stake president. I have since learned how sealings of families in the temple works and I have reason to be peaceful about eternal life. But I still have to get through this one. So I decided to work toward going back to the temple. My negative feelings were eating me alive.

How does this relate to my running? Bad feelings, grudges, pain, betrayal, regret, all of these things weigh on you. And you can feel it. Depression literally makes every breath you take feel heavy. Your lungs feel weighed down. I started to run to cope with the stress of this incident that happened three years ago. It was so stressful I was hospitalized in January of 2012 for stroke symptoms. It was the worst thing I'd been through in my life. After I was hospitalized, I needed seomething to help my body cope with the stress. So I started running. Yes, I run to manage my EDS. But this was the root of my competitive running. Before, I'd run, swim, do a variety of workouts. But this incident lead to my sole focus on running. And the day I stopped letting these feelings run my life was the day I noticed my lungs felt lighter. I felt like I stood up straighter. I ran faster. I really saw what I was made of. I endured something so awful mentally that I was able to put my physical body to the test and saw what I could really do. What I am made of physically and mentally. Above all, I learned how much the mental and physical work together. Mind over matter. If you have something weighing on you you have to let it go or your mind will be weighed down and weigh down your body, your lungs, every breath. You have to let it go. You have to conquer your mind before you can conquer your body.

Anyway, we had planned this temple trip. And I was scared to death! I knew going there was either going to make me or break me. I was either going to go in and feel peaceful or I was going to go in and feel awful and give up on my eternal perspective of life. The week leading up to the temple was terrible. I had so much anxiety. I canceled the trip twice! But we ended up going, of course. And the entire drive up there my mind was empty. It was completely clear. I thought I would freak out and have anxiety. But I was totally clear.

When I walked into the temple and went throughout my work, I thought for sure I was going to receive some sort of revelation: "Oh, poor Melissa. There is a special place in heaven for you for having to deal with people who would treat you so poorly and never even acknowledge your feelings or accept responsibility." Nope. It doesn't work that way. I did receive personal revelation for myself, but it was not what I thought it would be. I learned that I am obsessed with how poorly my husband's family treats people and how little regard they give to others feelings. This is because I have OCD. I have a tendency to obsess about certain things. And I obsess about his family and how they suck at being people, are completely untrustworthy and unreliable, and have no regard for other people. I have to let them go. I learned that I have to give them up the way addicts give up their addictions. I am addicted to his families behaviors. I had to let them go.

I walked out of the temple that day with complete peace of mind and peace in my heart. I feel lighter. I cannot stress enough how much anger affects your physical body. Stress and anger and have put weight on my body, made me look ten years older than I should and slow down my running!

I was confused that day in the temple. I had continued to make efforts to be friends with his family and I thought, "Don't these things make me a good person? A better person?" And the answer I received to my question was, "Not doing them won't make you a bad person." So I am no longer the first to write the email, the first to make the phone call, etc. If they contact me I respond. But I don't make an effort anymore. I don't think about them anymore, don't think about how I can improve my relationship with them. They aren't a part of my life anymore.

My first run after this revelation was two days after the temple trip. Running was so much different when I wasn't doing it to cope. It was. . .  fun! It was fun to count how many times my feet were hitting the pavement instead of counting the amount of dollars that had not been returned for their failures. It was fun to lengthen my strides to see how far I could bound rather than lengthening my stride to see how high I could get my heart rate so I could get delirious and forget the thoughts that consumed my head. Each breath felt effortless and welcomed. Each heart beat that pounded through my chest was a welcomed reminder that I was alive rather than a sad reminder that I was alive. I remember even laughing out loud at one point out how ridiculously enjoyable this run was. I had been working so hard to run in the midst of negativity, bad thought, heavy head, heavy legs, heavy lungs. I worked for three years to figure out how to run through that. And all it took was 3 hours in the temple to lighten all of that. I thought all those years I was improving. But I didn't improve and get any better until I let go of my anger, frustration and all negative feelings.

It's been three weeks now since this revelation. And I have made more progress in three weeks than I did in three years of training. I wish I had overcome this sooner. Get rid of the people in your life that you can't trust. The people in the life that are going to fail you and be a disappointment. The people who don't acknowledge you or your feelings. I wish I had done that sooner. But it had to happen for me slowly so I could learn what I did. It needed to happen in stages. After these last few weeks I have a new confidence in myself. I am going to meet USATF qualifications. And when I do, I'll have his sisters to thank. I never would have learned the roll that letting things go plays in achieving your goals. While I have them to thank, I probably won't. I've given them enough myself, my money, my trust, my life. I won't give any more to them. From now on it's for me. It's for my kids. It's for my marriage. I ran to cope so I could still be a human being to my kids and my husband. But not anymore. Now it's because it helps me manage my EDS, helps me teach my kids to manage their EDS and frustrations in life, and above all, the rapid heart rate I get from running a mile in 6:45 is a blissful and welcomed reminder that I am alive! That I am a human being! That I have a beautiful blessed life!

Before, I was not a whole person. I ran to feel something. To feel the pain of mortality as I'd dealt with my EDS. I ran to try to be a better person, a better mom, a better friend because it removed the negative thoughts from my mind. But now it's completely reversed. I now am able to run because I am a better mom, I am a better person and I am a better trustworthy friend who will always come through and never betray. All these things improve me mentally and likewise physically as opposed to being the things that are keeping me down. I am a whole person now. Now that I am the better person I am as I have been working so hard on improving myself (and continue to work on myself) I run with confidence, not baggage.


I run fast because my pounding heart beat is a welcomed reminder that I am alive! It is a beautiful life.

How I came to run a 7:36 minute mile.

This blog was never intended to be read. It has served as  a record of my progress, mostly. It started as a record of the journey of my mother and I from immobility to a half marathon. But I am still using it to record my journey since the journey of Ehlers-Danlos is never over. Anyway, I have invited some people to read the blog today, but before I begin that message I will continue as normal.

Weather: Great. mid 70s.
Pain level: very mild. Had some hip pain due to weather causing inflamed joints, but nothing I couldn't deal with.
Stress level: Through the roof. Had some unwelcomed information vomited on me today. For the first time ever I wished I was deaf and blind. Can't hear the info, can't read the text. But it was this distressing news that inspired my blog post and invite to others and also contributed to my awesome day.
Dislocations this week: Zero.

My kids had swim lessons (40 minutes long). With the 30 minutes I had, I decided to see if I could run a 5k in that time. Mile 1: 7:52, Mile 2: 8:03, Mile 3: 8:16. And I still feel great. About to put in a night's work! Normally after I do a fast run I'm beat for the night. But I still feel up to getting some work done tonight. (Best mile yet, 7:36).

********************

Now on to the blog post.

Chronic pain is a very lonely thing to experience. There is no one else that knows *exactly* what you are feeling. Pain can be so intense that it becomes all consuming. You have selfish thoughts and feelings about the sweet release that death would bring. Others get angry at these selfish thoughts and feelings as they do not understand that chronic pain can consume your entire being to the point that you are incapable of thinking of anything else. So of course we aren't thinking about you in that moment. The pain has taken all control of your mental faculties. It is unrealistic to think one could manage even the slightest concern for others.

I want to note that I have lost weight since this picture :) I sustained a significant injury that took me 8 months to heal from. I didn't do much running in that time :) 

In 2009 my husband and I decided to have a second child. For someone with Ehlers-Danlos, this means going to a geneticist, evaluating the possibility of passing along the EDS to baby, discussing options, blabbidy blee blabbidy bloo. . .  That meeting was pointless because I am pretty sure I went and did everything they told me not to do. They told me not to have another baby. Well, I decided that my first pregnancy wasn't so bad, so surely the second would be okay. It wasn't. And this was apparent as early as six weeks. At ten weeks they told me to abort the baby. Didn't do that either. Well, they told me a bunch of other stuff that I didn't really pay attention to. . . Geneticist bore me to death.

I was sick all day every day. I was put on zofran, an anti nausea that is often given to chemo-therapy patients. I had to go to my mom's for a month so she could take care of my son while I prayed to the porcelain gods day in and day out. I was keen on setting up camp in my mother's guest room. I think I had sufficiently marked it my territory. But I decided to return home at 18 weeks into the pregnancy as it felt cruel to keep my son from his father for so long. Upon returning I started to dislocate daily: knees, hips, shoulders, you name it. I was having trouble walking from about 14 weeks on, but had to resort to a cane at about 18 or 19 weeks. At this point I became high risk and had to go to the doctor every week. At one of these appointments I couldn't even get onto the doctor's table for my evaluation. I couldn't sit either. I could barely stand. I basically couldn't even stand being alive at that moment. The doctor put a pillow on the floor and I knelt on it on my knees and sat on feet. He then checked the heartbeat and did all the normal doctor visit stuff. I begged him to tie my tubes after baby was born. His response, "Well, I don't like to do that in women so young. They always regret it." I was 23 at this time.

So on I went trying to function and take care of a toddler. It was a well orchestrated daily routine of feed child, hurl, dislocate, change diapers, vomit again, pad de burre, chasse, step ball change, rinse and repeat!

 At twenty two weeks I had a weird pain in my abdomen. I called my high risk doctor and he had me poke around my abdomen and describe things to him. He said, "Call your husband at work. Tell him to drive you to the emergency room and tell the first person you see that you are 22 weeks pregnant and have appendicitis." FOR THE LOVE! Of course, my husband rode his bike to work that day. OF COURSE! So his co worker drove him home, then he drove me to the hospital, then I had an appendectomy. Awesome. Did I mention it was Halloween? And I missed my darling boy experience the first Halloween that he really knew what was going on? yah, good times. . .

Anyone with EDS knows that not moving around makes you more prone to dislocations and loose joints. So I had a few weeks of recovery where I didn't do much moving around. I was dislocating everything all the time. I tried to go to the arthritis classes at the gym. And the sweet little old people there would say, "Honey, I think you're in the wrong class." It got to the point where I couldn't even get to my high risk doctor's appointments! I couldn't walk to my car. I couldn't even walk to the bathroom. I couldn't take care of my kid. I had five REALLY good friends that took him each day of the week for a few weeks and then my husband would pick him up at the end of the day. I had a large body pillow that I put beside the bed. I would roll out of bed onto this pillow and pull myself with my arms to the bathroom.

I made it to my 32 week appointment. I begged the doctor to end it all and just take her out. He asked me when my mom was coming out to help me. I told him we were still two weeks away from her coming out. He said, "When she comes out, just lay in bed and cry for two weeks, then we'll take her out." Little did he know I HAD ALREADY BEEN DOING THAT FOR WEEKS!

Getting up off the floor or the couch was always a Herculean effort. I would get in a hands and knees position then pull myself up. I got in that position and then had a herniated disc. I got stuck in that position. I asked my son to go get my phone, but he didn't know where it was. I had to stay like like for hours until my husband got home. Toddler was hungry, needed a diaper change, crying and I couldn't do anything. I was just stuck.

The next week I dislocated my right hip. I couldn't get it back in place. It started to swell after three days. My doctor tried to put it back in and couldn't get it.

So we decided to have little miss Miriam. At this point, my doctor medically advised I have a tubal ligation. Yah, told you that twenty weeks ago, big guy.

I was still experiencing morning sickness. I threw up twice the day Miriam was born. And she was born at NOON! I didn't tell the doctors because they kept putting off the c-section thinking I would vomit during the procedure. They wanted to wait till later since according to their sound knowledge, morning sickness only occurs in the morning. Hmmmmm. . . .

I was given a spinal that felt like wild fire spreading through my body. It was a horrible feeling. Then they told me to lie on my back. First of all, lying on my back was a pain WORSE than childbirth with  my EDS and second, I was paralyzed from the waist down so I wasn't really sure how they wanted me to do that. Nurses assisted, and I howled like a banshee the whole time. They let my husband come in at this point. They don't let them in for the needle stuff because it makes them faint. haha! (They made him sign a piece of paper that said if he fainted during the delivery they were going to leave him on the floor because mom and baby are number 1). Anyway, I cried and howled through the whole delivery, which took 49 minutes. It was awful. I wanted them to knock me entirely out so badly, but they just wouldn't do it. EDS makes people feel pain more acutely and we do not respond very well to pain meds. I felt much of the procedure even though I had been given the spinal. I got the shakes from the meds and had to be tied down. It was the worst thing I ever felt. The procedure took so long because I had tons of scar tissue from my previous c section. They couldn't even get Miriam out because the scar tissue was so thick. They had to vacuum her out.

Once she was out, they proceeded with the tubal ligation. Not only did he cut the tubes, he cut out an inch of each one, burned the edges then buried the ends in my organs. He wanted to seal this deal! He put the one inch pieces of my fallopian tubes in a jar and showed them to me saying, "No more babies!" It was a little creepy, but it was a welcomed gesture meant to relieve my anxieties.

After I got home, I still experienced a lot of EDS problems. I would dislocate my knees every time I changed Miriam. I struggled with intense hip pain. On some days it was even too much to stand.

I returned to the arthritis classes so I could try to strengthen the muscle and tissue around my joints to keep them from dislocating. When that made me stronger, I decided to get a rehab physical therapist to teach me how far to go on the weight machines (with the flexibility of EDS, I can go ALLL the way on those strength training weight machines). The therapist showed me at what point to stop on all the machines. I used them regularly to build up my strength. One night I decided to start walking. I made it all the way around the block! I walked further distances until one day I decided to see if I could run. I ran all the way around the block. .2 miles. It took me about ten minutes! ha! I probably walked faster than I ran! I thought, If I can run around the block, surely I can run a half marathon! Hahaha. I tend to be a bit extreme when I decide to do something. . .

So I registered for my first half marathon which kept me working on running and focusing on my mobility. I ran the Dublin, Ireland Rock N Roll Half Marathon in 2:57. :)  My goal was to make it under three hours. My mom ran it with me. She also suffers from EDS. We decided to make it a huge deal and run it in Ireland because IT WAS A HUGE DEAL! I went from being immobile to running a half marathon!

I continue to improve since that time and feel more in control of my body than I ever have in my life. I have little to no joint pain. I have gone from dislocating daily to dislocating maybe once or twice a month. I can play with my kids. I can take care of my house! I can be around other people and care about them because my entire being is not consumed by chronic pain!

I am still working at it and improving each day! I can run a mile faster than I ever imagined. I can run for hours with ease and comfort. I hope to continue to work hard and improve. Ultimately, I have a goal of running in the NYC, Boston , London or any other Marathon Majors race! And, probably dreaming, but it would be super awesome to make Olympic Trial. So. . .  I'm just going to do it. Okay?

Another part of this running thing is that it helps me cope. My husband and I would have loved to bring more children into our loving home and family. I get sad often thinking of what great big siblings Josh and Miriam would be. It makes me frustrated and angry sometimes that my body can't do what it should naturally be able to do, what it was intended to do! Running helps me cope with the sadness of not being able to do what I want. Running puts me in charge of my body. EDS was in charge for a short time and took away from me the ability to have children. But I'm taking my body back!

I'm in charge now. I'm going to tell my body what we're going to do today instead of it telling me what it wants to do. So guess what, body? We're going to go to Olympic Trial in July 2016. Okay, body? Got it?! That's what we're going to do.

I've been in touch with Roanoke Valley Elite, a running club that trains professional competitive athletes. They like my story and think it will attract sponsors :) They are in a brief hiatus at the moment looking for a new chair person. Which is okay with me because it gives me more time to work on my qualifying times to get on their team.

Today's blog post is brought to you by the letters F and U. EFF YOU EDS! Consider my incredibly successful run this evening as a swift kick in the pants to you, EDS. A flip of the bird. I bight my thumb at you, EDS. You're no longer welcome to dwell in this body, Jerk.

Pain :(

I'm back at it! I ran a 10K tonight in 1:12. I wasn't really going for my quickest time, but I did get some good practice in running while having to go to the bathroom REALLY BAD. It was pretty extreme!

I've been dealing with continuous abdominal pain since Thursday of last week. I have to go to my doctor, but I don't want to because everyone says, "It's because you have EDS" and no one every has any answers anyway. Frustration! But whatever.

As of this week I am no longer working during the day at all. Not even work emails. I do some work in the evenings. It's 9:30 and I'm about to put in an hour or so. But my work load isn't demanding anymore. It was a bad week at work, though. Lots of complaints for the seamstresses. I think everyone was maybe getting complacent. I think everyone is just getting too comfortable. So I have to put out some fires there, but over all I think I'm in a good state of mind to start focusing and really buckle down on my training.Next week both my kids will be in school. It will be a great time to start the hard stuff! Drills, drills, drills! Looking forward to seeing what my body actually can do!

Oh and I ran .75 miles at a 5:30 min per mile pace. Getting faster!!!

Best mile yet!

I took Sunday and Monday off to get over my feminine problems. Then I tried to run yesterday and it turns out I wasn't quite over it. I googled what runners do and it said they just take birth control so they don't have periods! I'm not going to spend money on something I don't need (tubal ligation means I don't need that)! So I don't know what I'm going to do. I am going to ask my doctor for suggestions. I'm also going to see what he can do to treat the endo. It's getting worse and worse.

So I went out tonight. I was supposed to do a difficult run tonight, 4x800 at marathon pace with 3 minut recoveries inbetween. but since I haven't run since Saturday I just wanted to do an easy maintenance run. So I started and I was feeling good and comfortable and my watch said I'd run a mile. So I looked to see how long it took. . .  7:31! POW! And when I hit that point the song on my iwatch (i don't know what it's called so I call it my iwatch) was the same song that was playing when I pulled out of my marathon. I was like, take that as me flippin' you the bird, stupid injury! Normally at that speed I'm spent after a mile. But I felt really good and ran the rest of the 5k, no recovery laps or anything, averaging 8:20.

I have more to write, but I also have to make seven roman shades tonight so that I can go camping with my family this weekend. :) So off to work I go.

7:31 is Boston worthy. I think this is getting to be a realistic goal!