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).

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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.