Took a break to catch up on life.

Hello, everyone! I took a break for several reasons. The biggest one is because the next race that I am going to sign up for is ALL I want to talk about, but I didn't want to talk about it until I knew for sure it was going to happen. But as of today, I've save up enough of my pennies to buy my plane tickets for my family and I to go to. . .  Switzerland for the IronMan 70.3 in June next year!

Here's a little about what I've been doing in preparation for this:

1) RACING!
Race! Race! Race! Running keeps me from dislocating. I can't explain it. it doesn't make much sense to me yet. but it keeps me in one piece! I found a great group on Facebook for Athletes with EDS. It's such a wonderful and encouraging environment as opposed to the regular EDS FB group where people complain a lot.

I've done a few races since I last posted, but my most recent was Ragnar Tennessee!

This is me and teammate, Jessica before my first leg. It was a cold TN morning, but the smoky mountains were beautiful!

 This is Adam explaining things to me because this was my first road Ragnar. I had only done a trail Ragnar previously. Adam is responsible for making me a Ragnar Junky :) 

*All the best start at 5 am, in my opinion. . . .

Ragnar Medals!  Every teammate'a medal has a piece of this "puzzle." Together they say "Together we ran 200-ish miles." :) I believe is t was 194.6 from Chattanooga to Nashville.

We  used my van for van 1. Each team has two vans and six runners.

We wrote our names on the window and checked off each leg as we finished it.

All you have to do is go on  a long run with someone and you'll learn their reason for running. 

I don't think anyone I ran with ran because "running is fun." Everyone has a different reason for running. I loved this race and loved meeting so many wonderful people. they are a great addition to my life and I am grateful for them. I am grateful for the experience. Though I will admit, it was brutal. I don't know if I can physically do another one. But I can certainly try. I had a difficult time on my last leg in this race having dislocated my knee. My teammates were so kind and encouraging. They cheered me on from the van and reminded me that all they cared about was finishing and not time. They were very kind. It was a good group!

2) Therapy:
I've been in therapy for the past few months. I have Obsessive Dominant Disorder. It's Obsessive Compulsive Disorder, but I don't struggle with the compulsions as much. I am unable to control how much I obsess about one particular thought. I think about it till I have made myself sick. This happens when I start to feel stressed. And when do I feel stressed?? When my life feels like it's out of my control! When does my life feel like it's out of my control?? Every time I can tell my EDS is progressing. So. . .  EVERYDAY! I tend to hyper focus on the worst even of my life. So I have been in therapy for it. And I think I found a doctor that is just the right match for me. I've been to two other doctors in the past for my OCD. But this one is a perfect match for me. She has been so helpful to me!

My birthday is in five days. Four years ago on my birthday the worst even of my life happened. I was betrayed and hurt by two family members. This made my OCD the worst it has ever been in my life. I did and said things that "weren't me." I definitely wasn't myself. I have been spending the past four years trying to show these people that that wasn't me and that I am in fact a kind and generous person. I am very loving and I care very deeply for everyone in my life. My OCD makes me someone I'm not. My therapist has been helping understand that what happened to me was awful and my verbal responses are something I have to live with and make room for in myself because I can't take them back, She is helping me make room for the extreme discomfort I  feel when I think about the horrible things I said. On the other hand, she is also helping me to not obsess over making it up to them because she understands, and agrees, that what these people did to me was a horrible heinous crime and how human beings could treat other human beings that way is just beyond us all. So she has been helping me try to stop feeling the need to show these people who don't deserve anything from me that I am actually a good person. I've been hyperfocusing on that one day of my life when I have 29 years of goodness around that one day. They don't deserve to be a part of my life. They were cruel and horrible to me and I am slowly learning to accept it. They are not right with me and my mind has a hard time being at peace with that. I often hope that at that special time and place when they are asked if they "right with their fellow man" that they will think of me, because they aren't. My mind starts to obsess with making the pieces fit together like a puzzle. When they don't fit together, I think about it over and over and over trying to force it all to fit. Trying to think of why they would abandon me during our busiest time which they were fully and completely aware of. Why they would keep money for work they didn't do. Why they would do this to me on my birthday. What kind of a person does that to another human being? It's cruel. Its' hateful. What they did was not okay and is still not right with me. It has been four years, but no single event in my life has affect me and my family so much as this one. So when I start to get stressed out or start to get frustrated over my progressing decline in health, my mind immediately turns to that incident. I have been very fortunate to find a doctor that I am making great success with, but the road is long. I remain diligent in my treatment with her, but it is a constant battle. I am constantly fighting with my thoughts and battling them and it is exhausting. But I am in a much better place now. She is teaching me to be committed to forgiveness.I know it's working because my other fears have started coming to my mind lately when I get stressed, not just this single event. More on that another day if there are any other EDS readers out there who struggle with OCD and want to chat about it. . .

Basically, I've been trying to get this "mind, body, spirit" thing figured out and I wanted to get my mind in a healthy place so I could be at my best for next years race season. I'm feeling really good overall these days. I'm still working on things and still struggle with my thoughts. It will be that way for a while. But I am so much better now than before. I don't get sick over the obsessions anymore.

3) Surgery
I had surgery in August. I had to have a uterine oblation. With EDS being a tissue disorder, it's no surprise that the various organs in my body are fighting against me. I was going to go with the partial hysterectomy, but my doctor advised we go this route first. I am pleased so far.

I have an intolerance to pain meds? Any of you EDSers like that?

6 hours post op. Doing work emails :)

24 hours post op. Walked 1/4 mile!

Then three weeks later, I ran the Rock N Roll Virginia Beach Half Marathon!

So, suck on that, EDS!

4) Working
Work has been going so well. I just hired my 20th seamstress! This team is getting out of control! Luckily, I have a great assistant who can manage all these people! For any new readers,  I own and operate a custom window treatments business. It has been wildly successful! We are now on Amazon Handmade. Still getting inventory in there, but you can check us out here. And we're finally getting our snazzy new website. In anticipation of an influx in orders I've been hiring everyone who asks for a job :) So hopefully this all works out! ha!


Where I'm going:

Upcoming events include a marathon in February, a sprint triathlon in April and an olympic distance tri in May. Then I'm off to Switzerland! That may be my last race. I've had to have some long hard talks with myself about being realistic and facing reality. My body is deteriorating and as much as I hate to say it, I think Switzerland will be my last race. I hope it's not, but I need to be realistic about my health. if I'm not realistic, I might do more damage than good. It has been very  hard to accept that. I still don't think I've fully accepted it. I think I've said it out loud, but not really let it sink in, if that makes sense. If there is one thing other than my past experience that I mentioned above that gets me down more than anything, it's thinking about my deteriorating mobility. I get in a serious funk over that. So I think I'm trying to avoid accepting it entirely for that reason.

Anyway, I know this journey coming up is not going to be easy. And a lot of people ask why I'm doing it. I can't explain it verbally yet. I will be able to one day. But for now, support and encouragement without knowing the "why" would just be an amazing and kind thing to do. And if any of you have athletic pursuits while suffering through EDS, please let me know. I'd love to follow your journey. We're all struggling at the same time even if our struggles are all unique to our own bodies. Let's encourage and uplift instead of nay saying. I look forward to hearing any tips from any of you who train with EDS. Leave them in the comments! Can't wait to get to know some of you!

In closing, I just want to add that the last few years of my life have not been great. But I have a wonderful family. I have a husband who goes along with all my crazy ideas and encourages me to do all I can. I mean, running an IronMan with EDS? It probably isn't realistic. but who's my #1 cheerleader??? My amazing husband! So, yah, the past few years  have kind of sucked. But my birthday is in 5 days. i'll be leaving my 20s and entering my thirties and I couldn't be more excited! It's a  new decade and I have a great person by my side to go through it all with. It's going to be a great year.



M.

July 11, 2015

Hello.

A small progress report.

Moving slowly, but surely. I am now training for triathlons. I purchased a Giant.

I have only just gotten into this, so I am still learning how to take care of the bike, how to ride it, etc. I'm enjoying it though.

I've also been swimming a lot. I love it. I feel stronger than ever after swimming. That's what I first did to gain my strength back after being immobile after Miriam was born in 2010. It's the only way I was able to walk again. And now that I am swimming again, I remember that feeling of stepping out of the pool and feeling like I could take on the world.

I had a coach lined up for the fall, but I decided not to use coaching services anymore after more bad news regarding my EDS. I haven't yet accepted some things, nor do I have the bravery yet to talk about it. So I am saving that till later this fall. But for now I will just say that I am slowly accepting my deterioration and am determined to make this next year the best yet as far as celebrating my mobility goes. It is not going to last forever, or even much longer. So I have had to switch my way of thinking. My ultimate fitness goal was to be an elite athlete, running among the best runners despite my physical difficulties. But I am now having to change my goals to something as simple as finishing a race. This has been very hard for me. I have been working very hard to get back to the level I was before I had my injury two years ago and I am having to accept that that will not happen. 

I still plan to race for a bit and am hoping to reach out to the EDNF community about the success I have had with my mobility these past five years. But ultimately, I have had to completely change my plan and my way of thinking. In light of recent news I will no longer be focused on being an elite runner as my ultimate fitness goal. 

EDS updates: Current ailments:

1) It turns out your cornia is made of connective tissue. Yea! So mine is acting up. My doctor is trying to correct it with contact lenses, but my eyes haven't responded well to those. . .  I've given it a month, but it's just been miserable.

2) Endometriosis: My doctor tried to treat my endo as simply as possible with just simply using birth control and trying to have no periods. The BC made me kuckoo for cocoa puffs and I had to stop that treatment before I end up in the kuckoos nest. We skipped step two, which was an IUD, because I did that once and it didn't stop my periods at all. Step three is a uterine oblasion and step four is a hysterectomy. Since the route to the baby motel was permanently detoured, we decided to go with the hysterectomy. Though, it will just be a partial hysterectomy as I don't fancy going through menopause at age thirty. So I'll be doing that next month :(

3) Dislocations: ugh. Stupid dislocations. I can manage a lot with my running and other exercising, but my body wants to dislocate everything I don't manage with that, like MY JAW! Whatever. 

I think that's it without going into too much detail on what I'm not ready to accept or talk about yet. I'm trying to find the courage within myself to be brave and just continue on. I try to save it for my regularly scheduled pity party, but sometimes I just want to shout and tell God he's cruel and just make bad choices. haha! Oh, my life. . .  Don't get me wrong: I know I have a very blessed life and a very rich life. There are just dark moments when I know no one knows what it feels like, no one knows what to do or say, no one can help and it isn't going to change or end. It's just going to get worse. In these dark moments, I get lost for a few minutes and throw my little temper tantrums and just wonder what it is I'm supposed to learn from this experience, how I'm supposed to be a mother, a wife, a friend, a daughter amidst all of this. How am I supposed to give myself to my family, to my children when I am not a whole person myself and have nothing left to give?!

I won't let it get the best of me. I don't know how I will manage that. I just know I won't let it. I suppose that's the best place to start: to decide to endure to the end, even if it kills me. There is a lot of good to come, and a lot of bad to come. I'm just going to say it out loud: I'm scared. Before I get in the thick of it, I'd better figure out how to make the bad into good. All I can do in the dark moments to keep from over thinking about it is to focus on something happening right now. So I count the clicks of the second hand. One tic, two tic, three tic,. . . replace the negative thoughts with anything. 

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.

A lot has changed in the last 24 hrs

First things first, today's run:
Short run because I have lots of work to do tonight. I originally didn't have lots of work to do, but a few things have popped up so now I have a lot to do.
Ran 5k, lovely weather, just perfect. Wished I could have stayed out longer. My calves are killing me from yesterday's run, but once I get moving I don't even feel it.
My mystery abdominal pain is lessening. So I may not go to my doctor.
No EDS pain today except in my fingers, but there isn't a whole lot I can do about that.


Okie dokie. So did my research on the NYC marathon. If I want to use that as my olympic trial marathon I have to run a marathon before Dec 31, 2014. And even then, it isn't guaranteed I'll get in. They've already excepted all they're competitors and are now onto charity runners and "regular people." The latter two gets selected by lottery. But I just think if it's meant to be then I'll get chosen. If I don't then this wasn't my year. But anywho, I found a few races later in the year. I have decided to run the Richmond, VA marathon for my qual race on Nov 15th. I'm a tad nervous because my current program is structured for the race to happen the first week of January. So I am not sure if it's going to work out. But I am at least going to give it a try.

So tonight I have to make three more training videos because I'm about to hand off all my work to someone else. (I hired three people last week. I might hire two more, but I can't think about that right now :)). I am up back up to eleven subcontractors and I think managing them is going to be quite enough without any of the construction end of the business in my hands.

There was another race later in November, but it didn't work out with my social life ;) My birthday has become a very sad occasion for me ever since my 2011 birthday. Something happened that day that has just tainted my birthday for me. It is no longer a happy day, but a day of grief and great personal sadness. I have forgiven those who hurt me on that day, but they still have not accepted responsibility or even acknowledged how much they hurt me. Even though my birthday (Nov 16th) is still two and a half months away, even thinking about it coming up gives me so much anxiety. I hate it now. I don't even want it to come. My sister knows how much this hurts me. So I am flying out to her in San Diego and she is taking me to the Bastille concert to celebrate my birthday! I wouldn't have it any other way! I have a hard time spending my birthday with my husband because it was his family that hurt me. And he knows what they did and knows how much it hurt and is fine with me celebrating my birthday with my sister.

So anyway, I will be leaving for that early morning Wednesday, the concert is Wednesday night, then my sister takes me back to the airport after the concert. it's going to be the best 16 hours ever! haha! But that's two days out of training. So the end of November races are out for me. The Richmond one is perfect because it's the day before my birthday. So I'll have plenty of distraction from my sadness. And we used to live near Richmond. So I am hoping that on my birthday (Sun the 16th) that we'll be able to take our kids to where we lived for Joshua's first year. I think that would be a fun way to spend the day. Plenty of distraction. Hopefully see old friends. Maybe we'll even go to church in the Bennetts Creek Ward!

I do think running on the 15th of Nov will work out even though it doesn't necessarily work with my current training plan. I think I have a lot of anxiety and a lot of grief I'm still dealing with as my birthday approaches that I will be able to work out in these intense training sessions. Put those feelings to good use!

On Saturday I will be running a tempo race. My husband is going to ride his bike (with kids in the trailer) at a speed of 8 miles per hour and I am going to run behind him. Hoping to do that for a 10k. I won't stop until I've done 5k, but I'm hoping to hold out through 10k.

I am looking into getting a personal trainer to help me with my form and strengthening my core muscles. I'm a wimp when it comes to my core. After two c sections and an appendectomy I have an intense fear of splitting open and having all my inside fall out of me. I've gotten better and have been doing tons of core workout lately. But I'm pretty sure it isn't enough for what I am about to put my body through. Have to step it up. At that point, I'll be making more detailed records of exactly what I'm doing. Follow my twitter @MelRunTheWorld. And I'll be getting an instagram soon since I just figured out what that is. haha! And I guess it goes together if you want to have a twitter and post images or something. I don't know. I'm so dumb at the Internet.

Peace out, y'all! Thanks for reading! I hope to inspire people as I progress. As of Tuesday of next week, both my kids will be in school during the day and I will be ramping up the training schedule! Look for it if you want to join me and follow along.

A surprise!

Today's weather: awful and rainy. Joints reminded me of this all day. Thank you joints for keeping me informed. But I ran anyway. I was surprised. I will preface this by saying that i have slept a total of 8 hours in the past two nights and am starting to really feel it today. I went into this run very tired. I did a couple of practice laps to practice my forefoot strike. Man, it is so hard for me to get that just right since I've been running without doing it all this time. After a few practice laps I started running. My joints were achy, I was sweating profusely for some reason after only a short distance and I felt like I was gong slower than molasses.

One thing I REALLY need to get over is that I tend to not even finish a run at the point I realize I'm not going to meet my goal. I realized today I wasn't going to meet my 10K goal at the 6thK. I was already at 41 minutes. I told myself I needed to finish anyway. When I got to 8 k I was at 52 minutes. Then I realized I did my math wrong at 6k and I totally could have finished in an hour! But I let myself get down about not reaching my goal and I slowed my speed because of that. I really need to get over that. And pronto! That, or get better at math :) I was so surprised at the end of my ran that i was actually running at my goal speed even though it felt like I was trudging through molasses. I think (I HOPE) this means I got my forefoot strike down. I think my legs have been sore as I have been trying to use the different method of running and I was just feeling tired. But the proper running style helped me maintain my speed! What a great day! Then I picked up my kids at child watch and ran a half mile with them on the track. They are freaking fast. I couldn't keep up (really. I wasn't just being nice and letting them win).

In other news: I registered my husband and I for the Tinker Bell Half Marathon in May at Disneyland! It will be his first big race! "Find your inner pixie" they tell him in the confirmation email. hahaha. I'm sure he's going to love that! Later this week I will be registering my family for the family 5k run so that my kids can do a race as well. :) We did that one as a family in January and it was the neatest experience.

Short term goals modified:
1) 10k in an hour
2) teach my kids good running posture and correct style.

As for nutrition, nailed it today! I hope to be able to keep it up!

Tomorrow is conditioning day. Woo hoo. . .  Haven't heard back yet from the Roanoke Elite Athletes Club yet. Maybe later this week. We'll be running as a family now in the evenings and on Saturday's so my husband can get ready for his race too!

Super Sad about Robin Williams today, too. Super Duper sad. I felt like I understood him. I have been so depressed that death sounded as nice and peaceful as a vacation sounds to some people. A drink, maybe. A good book. a long hike. Or whatever makes you think of pure R and R. I would put my head on my pillow and think that death sounded nice and peaceful. That was just in recent years, but I no longer associate with the people who made me not able to live in my own mind. And I am okay now. I actually started running around the time this was happening and found that it helped me cope with the grief these two individuals had put me through. But when I heard he had committed suicide all I could think about was the time when there was so much going on in my mind that I could't live with in there. I couldn't exist as a human being with what was in there, and for a while I wasn't! I was a robot! I hope he has found peace from whatever was plaguing his mind. I was able to find my peace, but it took 2 and a half years. Two and a half years of utter sadness, disappointment, damage, you name it. But I finally found my peace. I kept waiting for these individuals to accept responsibility and thought that was the only way I would find my peace. but I found it through my Savior, Jesus Christ, and through making healthy changes to my life like running. I do feel sad for the families of people who don't understand what it's like to live in a mind plagued by obsessive thoughts that are out of control. But I myself can understand the ones who hurt themselves. I'm not saying it's okay or that it's right. I'm just saying that I know. And I hope he has peace now. I didn't think I'd ever live another day with peace in my mind and in my heart. And I do now every day. But it took a long time and I did a lot of damage along the way.

Why I am choosing running over pain meds

Yes, running takes time. Yes, running is boring. Yes, running doesn't always feel great.

Why do I choose that to manage pain over pain meds? Because my family has a predisposition to addiction and pain medication abuse.


Last month we took a family trip to Norther Arizona where we rented a cabin for a week. Halfway up we stopped a McDonald's in Payson, Az for lunch and bathroom break. Since there were so many of us, we chose to sit at one of those long booths that has chairs on one side of the tables and a booth on the other. My sister sat right in the center of the booth to save our seats. She started acting weird. She just had this look on her face. My younger sister and I were wondering if she was hungover or something. Then we watched her try to take a straw wrapper off and she couldn't do it. My other sister said, "I think she's on something." Then my brother came over with his trays of lunch for his daughters and sat them on the table. My sister said to him, "These seats are saved," as if he were a stranger. My brother didn't say anything. I guess he thought she was joking or something. He just went and rounded up the kids. But then she started staring off. My dad came over and sat down with his lunch. He asked if she was okay and she kind of started bobbing back and forth. There was an urgent care across the street so we sent my other sister over to get a wheel chair. I sat next to her and asked her some questions. She tried to tell me something but it was all slurred. I think she was in the middle of having a seizure. My sister got back at this point and told us that urgent care wouldn't see her. They said if we brought her in that they would just call an ambulance because it sounded like an overdose. I asked her something else and she was completely unresponsive. So I told my dad it was time to get her to the ER. My dad was scared out of his mind and said that maybe we weren't supposed to move her. And I insisted that we move her and get her in the car. So from center of this long booth, I sat next to my sister and pushed her inch by inch out of the booth. My dad and husband were at the end of the booth ready to catch her while my brother was out pulling up the car to the door. My dad and husband got her arms over their shoulders and proceeded to walk her out of the McDonald's. At this point her son started to notice something was wrong and freaked out a little bit. I made him stay with me and he kept saying, "I want my mom! I want my mom!" They got her in the car and took her to the ER. By then she had stopped seizing and was able to tell them she took three somas that morning. She said one she took by accident and just grabbed the wrong pill. Given her history I'm not inclined to believe it. I want to. But I just can't. They kept her at the hospital for monitoring and the rest of us siblings drove to the cabin with all the kids.

It was very scary. It was very nerve wracking to have to make decisions for her when we didn't know what was going on exactly. It was sad to watch her son watch all of this. And then when we drove home from the cabin a few days later we didn't even want to stop there because it gave us anxiety (it's one of about two places to stop in Payson). She's fine now, but I wonder if it caused any brain damage.

People with addictions and abuse think they are only damaging themselves. But they aren't! It affects everyone around them! It's a very selfish thing to do. Take care that I am not saying everyone who takes pain meds is selfish. I am saying if pain meds are abused it affects everyone around that person!

I know that my pain will get worse and that I will likely need to find other methods of pain management. I know that pain is very real. When I say these things about not taking drugs, etc people assume I don't know what their pain feels like. I know pain! Trust me! Four years ago I was walking with a cane and a walker! I still can't do certain motions because it takes me out for an entire day (whatever motion you do when scrubbing something like a bathtub or floor kills my hips for a few days no matter how good I feel from running). I know what it feels like to be in pain.

I can't make a lot of promises where my health is concerned because no one knows that future. But I promised my husband that night that if he ever had to take me to the hospital it wouldn't be for a drug overdose. I am going to ride this for as long as possible. As long as running keeps me pain free I am going to do it. And because I have witnessed on several occasions my families predisposition to addiction I will not pain meds. Even if I have to run for hours a day in the pouring rain, bored as heck, whatever. . .  I'm not taking drugs. I will never be the source of that pain to my family.

Please remember, anyone reading this, that this is a personal declaration. I am not judging anyone or trying to say anything about anyone's method of pain management. This is my personal choice and it is based on my experiences with my own family and my own EDS III. I am aware that everyone situations are unique and I am not judging anyone. I am only saying that in as far as I can control it, I will do what I can to not make my family worry about me or have to take me to an ER from a Mcdonald's!

I will run myself right out of this world before I make my children or husband watch me sell all my hopes, dreams, personality, life and everything else to a prescription.

Selfishness

5.4 miles today. I am feeling like a miserable failure. I really should be further. I'm frustrated. But I continue to have pain in what my husband helped me discover is called my Psoas muscle. I thought I had given myself enough time to recover, but today it feels worse than ever.

However, I am making other mental breakthroughs that will help me to do better and keep going. Yesterday's post was good for me. It was good to write down a few things. Yes, I want to say that I am doing this for just my kids or just to inspire or for only good things. But the truth is, I need this to heal. And it was good for me to admit that yesterday. It feels good to finally say that yes I am doing this for selfish reasons. Because I have a very hard time dealing with certain aspects of my life: death, mortality, family, betrayal, etc. Running has been the best way I have found to deal and cope. And now that I have finally admitted it, I have felt like I can finally run with a clear mind and focus on the less selfish reasons.

Because of this clearer mind, I woke up this morning excited to start the day and excited to see how far I would run. And I was so excited when I finally got out to run. But then disappointed when the pain hit. But I still ran 5.4 miles. Someone did ask me if I was okay. And I told them that if I didn't do something because it hurt I'd never do anything ever. But I do realize I need to allow myself to heal. But how much time does that take??? Argh! I think I'll try swimming and the elliptical for a few days.

Super frustrated.

Worst day, by far.

Friday I ran 1.82 miles. My shin splints were so painful I had to stop running. I sat in a corner on the running track and got very emotional. The only person I wanted to call was my sister, Ashley. And she's in boot camp right now :( I felt defeated. I sat there and stared at the track. And after about 8 minutes, I got up. I had to turn over on my knees and get up backwards because I was in so much pain. I walked slowly around the track once. It probably took me about 3 to 4 minutes. When I made a full loop I told myself that you don't get to Boston by sitting and looking at the track. So I started to run. In excrutiating pain, I ran 8 laps, which is more than half a mile. I held my breath, bit my lower lip and ran 8 laps. Then I sat down again. Someone who sees me there often came and sat with me and introduced himself. His name is Matt. He said, "You come here often, right? Like three times a week at least." I gathered that must be how often he is there for work. My reply: "I'm here everyday." He said, "Yah, have you already done your 50 laps?" I said, "Yep! now I just need to do 100 more!" He told me that I inspired him. I told him I was feeling defeated and wasn't sure what to do. While I knew the best thing to do was to rest and let my legs heal, I couldn't get my mind to wrap around that. After all, I had run 8 miles previously on shin splints. So why couldn't I just keep going? I told him I was going to take the weekend off. He told me he'd see me Monday and come to check on me. It was kind of nice to talk to someone instead of just running right past people and never getting to know them.

So here I am, on the couch, oiling my muscles and shins like crazy with my new doterra essential oils. I feel really good and hope to do an easy run tomorrow (easy run=distance, not speed). And you may have noticed, I let myself slip up in the previous paragraph. I've been telling people, so I figured I may as well tell the blog. And as I said before it isn't a huge deal, but I didn't want the added pressure of disappointing readers. I'm trying to qualify for the Boston Marathon. To do this, I have to run a marathon in 3:30. So far I am at 4:20. And I need to get that down in about 5 weeks. I'm not really sure it's realistic. I can do another race later in the year, but I fear if I go to pick my back up race I won't try my darndest to make it on this one. So I'll wait to after this race to see if I need to do another qual race.

Now, onto a question my new friend Matt had for me and that I have often been asked by others: Why am I running this marathon. There are so many reasons. One HUGE one, but many others that I will just bullet here. Some you may have no clue what I am talking about, and I won't delve into each of them. But you can just know that it is something that inspires, keeps me going something I want to get over, heal from, not think about, put in the past, or improve on.

-EDS III
-Grandma Joyce Jowels and grandma Ida arms
-Grandma Joyce and Grandma Ida :(
-Preston, Chris, Angie, Justin, Matt, Carl, Ben, Ryan, Talia and all my other friends whom I have lost over the years.
-Stress, Anger and frustration
- Home Remedy Designs: Cure For The Common Home; An act of betrayal that has hurt worse than any other pain I have experience.
-My children
-My mom
-My husband, as running has improved my general well being and makes me a much more pleasant person to be around ;)
-My seamstresses whom I owe my entire business to! Running makes me a better manager.
- Heavenly Father, I feel like running is my way of thanking Him for still being mobile in spite of the disorder.
- And lastly, because someone told me it wasn't possible. And that may be right. This may not be possible. Someone told me it wasn't possible for someone with EDS to complete a marathon. And that could very well be true. But I wanted to decide for myself. I will be the one to say that it is impossible for me, someone with EDS, to complete a marathon. And that is what April 27th is all about. I'll be the one to determine what I can and can't do. And if I can't complete it I am totally fine with that. Because I do know and understand that is a very real possibility for someone in my situation. But I won't know till I try. And I won't accept someone else telling me that it isn't. Even if they're right! Maybe it wasn't for them. And if I can't, you won't ever hear me telling someone else with EDS that they can't do it. Because every person is different with a different situation. I'll decide for myself what is possible and not possible for me.

I have had to deal with a lot of pain and grief in my life. When it has come to the death of my friends and family and dealing with health, I have mostly kept those feelings and emotions bottled up. I used to set aside a time during the week when I would allow myself to fall apart. That way, when I felt it coming on during the week I could just tell myself it wasn't time. Then I wasn't in danger of losing myself and wasting a whole day to grieving. So I had a pity party hour. And training for this marathon has helped me cope with a lot of that. I think about these things while I am on my run. I imagine myself running away from it and in the end I symbolically always end up in the same place: right back at home. So even though I imagine I am running away from it all I end my grieving runs with the understanding that I am just going to end up where I Started. Then I begin to heal. I have started to think about my friends and loved ones as I run and all the good memories we had together. And I like to imagine that they are cheering for me to complete this seemingly impossible task I have put before myself. And now instead of running from them, I feel that they are uplifting me.

Even with the betrayal pain I have had to deal with, I have found myself running toward the finish thinking, "They can't hurt me at mile 26." But now, as I have completed half of my training, I have found that I want to take Home Remedy Designs with me all the way to mile 26 and wish them the best of luck. It started out as a painful healing process. But I feel so uplifted by all these events that have happened in my life that I can't help but focus on the positive. I am so glad that I could give these women something that they could take from me and make their own to help support their families. Thinking on it that way has given me so much peace. And now when I think about it as I run to heal from it, I don't feel that I need to heal. I don't feel the weight of it and the pain in my chest that it used to bring. I feel peace and contentment that I was able to help improve their lives and their own families. And that peace helps me run a little faster, and that weight taken from my shoulders helps me run a little faster.

I used to imagine myself running across the finish line with a list of names of people I'd lost that I couldn't cope with any more, and with Home Remedy Designs on it. And I imagined myself just throwing it away at the finish line with all the other pain in my life. But I already have rid myself of it. I often find myself meditating and praying while running and I have felt that divine peace come over me where these people and this business are concerned. And I love the fact that I can now imagine myself crossing the finish line for no other reason than to help inspire others and teach my children to decide for themselves what is possible for them and not live their lives based on what someone else told them was possible.

Training for this marathon has already been a life altering experience and I imagine race day will be as well, whether I complete it or not.