Wednesday, November 11, 2015

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:

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.


Friday, July 10, 2015

July 11, 2015


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. 

Thursday, May 21, 2015

I'm back. . . and very excited!

I'm back! I took a little break for a while for some health stuff.

My lower spine is collapsing on itself. I will need to have those spacer thingies put in my spine. Blah Blah blah, not talking about it because I haven't quite "accepted" it yet. So when I finally come around to doing that I'll write more.

As my fellow zebras who are reading this know, EDS is a tissue disorder. So it affects everything made of tissue: organs, ear drums, and uterus, among other things. . .  I have endometriosis and will be having an IUI in August. So I am trying to cram as much work as I can in between now and then. If endo had a face. . .  grrr. . . .

My last coach and I weren't a good fit. I think I was too "needy" or something. Ultimately, I was embarrassed more than anything. I had no clue I was so demanding. Found a new coach and am very optimistic. I compensate for my demanding nature. :) Lessons learned. . .  In a very short amount of time I've learned how to read my Garmin stats, fixed my hip "swivel," and set up a good training plan so I know what to expect and know what is expected of me. Clarity is good; avoids embarrassment :)

My EDS has been very bad the past month. Worse than I've felt in a long time. I have gone back to dislocating several times a day, I have been working slower than ever because my joints hurt so bad and I have slept worse than usual. I've never been a good sleeper, but lately it's been really bad. It's been so bad that I feel like I have aged when I look in the mirror :( I'm not a vain person, but it is frustrating. BUT, I have an unstoppable personality. And so I am back at it! Slowly. But back.

With my ultimate goal being to be an elite runner, or compete on a master level, I am going to be starting right out of the gate with two workouts a day. Since I am sort of "starting over" the workouts will be small and are mostly designed to get me in the habit of doing something twice a day. So it will be something small, like a 15 minute core workout in the morning and then something more intense in the afternoon/evening, though it will still be short. Trying not to overdue it, but start to build a lifestyle of an elite runner.

I feel really good about the design of this plan. I feel like it is specific to my goals and also respects my limitations. The plan is more detailed, but I am short on time, One of my seamstresses messed up ROYALLY and I have to remake the order. So I am going to be doing that all night. . . But more about my plan soon. I also feel I have made a better coaching match. Instead of, "We'll get to that," or, "That will fix itself over time," I'm hearing a lot more, "Okay, Let's do that right  now!"  I feel like the training sessions are balanced between making progress but also addressing a lot of personal concerns and past learned habits that need to be fixed. I like thee balanced feeling. Everything is going great so far.

More soon. Gotta go fix a royal mess for now.


Thursday, February 26, 2015

2/26 run--30 minutes

I ran 38 minutes ish today.

EDS pain- Had some pretty wicked arch pain today. Dumb flat feet. . .  I will have to wrap it tomorrow to keep my arches from falling.

Overall well being: still not sleeping. . .  don't know what's wrong with me. My stress levels are pretty good. I hired two more people: my cousin and my sister in law. Business is good.

Injury Recovery: Didn't feel my psoas muscle "complain" at all today.

Weather: blah. . .  but I didn't have much joint inflamation or pain from the pressure outside, so it was good, overall.

Today I just did a short run. I felt really great. I finally felt like I could make longer strides not feeling much pain where I was injured. So I started to do that, but then I remembered my coach wanted me to do a ten minute warm up with my heart rate in the low 150s, 10 minutes at 160, then 10 minutes just below 150. Doing long strides gets my heart rate too high right now because I'm not used to running like that again yet.

Overall, I feel really well today. I am starting to feel exhausted from not sleeping. And if my kids have one more snow day, I might lose my mind.

I'm going to go read Hunger Games lying down and hopefully get tired from eye strain and fall asleep.

Wednesday, February 25, 2015

2/25 long run, just notes on how I felt. Nothing special today.

EDS pain: moderate, ankles, knees and shoulder pain. My should subluxed at 90 minutes into my workout.

Overall "wellness": I've slept a total of ten hours since Sunday night. . .  It's now Wednesday morning. Not because of anything in particular. It's not because of work or pain, etc. I just haven't been able to sleep. :( It has caught up with me today and I'm feeling terrible. I was feeling okay during my run though. But right now, I feel awful.

Weather: good. Very old, so I ran inside at the Y and also did stairs.

 I felt great. I didn't ever get to the point where I was feeling overly tired. I think that's because I kept my heart rate down at a reasonable rate. Didn't stress it too much. I tried to stay around 150,

I'd say the hardest thing about today was breaking in the new shoes. I bought a pair of Brooks Cadence yesterday. About 60 minutes into today's run, I couldn't feel my toes :)

Overall, today was great! I'm still frustrated with feeling slow. But I am always reminded of a few years ago when I used to have to plan one activity per day (doctor visit, grocery shopping, etc) because it would take me so long to even just get to my car and get in and out of the car. So when I think of that, I don't get frustrated with an 11:30 minute mile. I do feel very strong and not as prone to dislocating right now. Last week was a bad week, but this week is great. So I am trying to fit in as much as I can while I am doing well.

(Notice the bold I. This means I was not alone. ;) I'll explain later. For now, I'm just trying to spare someone. . ). ;)

Tuesday, February 24, 2015

The world is as it is. I am as I am. 2/24

I was keeping track of everything on Garmin Connect, but I will be returning to the blog to track everything.

EDS pain: negligible to moderate. Both knees hurting and right shoulder. No dislocations, but there was weather pressure as it was snowing.

Overall temperament: Irritated ;) What else is new.  . .  But we choose how we feel, right?

Injury recovery: I went to 56 minutes into my run today without feeling any pain or twinging at all from my psoas muscle. This was significant improvement, so I will be trying to increase my speed again starting tomorrow. I feel comfortable with that. I used to feel it twinging within the first mile. I got to mile 5 before feeling anything today. So I'm confident I can lengthen my stride a little. I have to take that part slow as that's what you use your psoas muscle for!

Today I got my new running shoes for my next race. I decided to try Brooks. I normally always go with aesics only because I know they work well for all my issues. but I decided to branch out today. I got the Brooks Cadence shoe. I hope i don't have buyer's remorse. I've been having a lot of "buyer's remorse" this past week. . .

Yesterday's post stemmed from frustration with a situation in my family. I am so frustrated with drug abuse. It ruins families and lives. There are other ways. I am just irritated in general. But again, I am choosing to be irritated. I can choose to feel another way. . . So I try to think of something else. Anything else. Today it was Samuel Coleridge's Rime of the Ancient Mariner. I thought specifically of part 4. It is my favorite. Though, the entire poem is beautiful and it should be read in its entirety. When my mind is overwhelmed, I replace my thoughts with this (or something similar) and then I feel peaceful.

'I fear thee, ancient Mariner!
I fear thy skinny hand!
And thou art long, and lank, and brown,
As is the ribbed sea-sand.

I fear thee and thy glittering eye,
And thy skinny hand, so brown.'—
Fear not, fear not, thou Wedding-Guest!
This body dropt not down.

Alone, alone, all, all alone,
Alone on a wide wide sea!
And never a saint took pity on
My soul in agony.

The many men, so beautiful!
And they all dead did lie:
And a thousand thousand slimy things
Lived on; and so did I.

I looked upon the rotting sea,
And drew my eyes away;
I looked upon the rotting deck,
And there the dead men lay.

I looked to heaven, and tried to pray;
But or ever a prayer had gusht,
A wicked whisper came, and made
My heart as dry as dust.

I closed my lids, and kept them close,
And the balls like pulses beat;
For the sky and the sea, and the sea and the sky
Lay dead like a load on my weary eye,
And the dead were at my feet.

The cold sweat melted from their limbs,
Nor rot nor reek did they:
The look with which they looked on me
Had never passed away.

An orphan's curse would drag to hell
A spirit from on high;
But oh! more horrible than that
Is the curse in a dead man's eye!
Seven days, seven nights, I saw that curse,
And yet I could not die.

The moving Moon went up the sky,
And no where did abide:
Softly she was going up,
And a star or two beside—

Her beams bemocked the sultry main,
Like April hoar-frost spread;
But where the ship's huge shadow lay,
The charm├Ęd water burnt alway
A still and awful red.

Beyond the shadow of the ship,
I watched the water-snakes:
They moved in tracks of shining white,
And when they reared, the elfish light
Fell off in hoary flakes.

Within the shadow of the ship
I watched their rich attire:
Blue, glossy green, and velvet black,
They coiled and swam; and every track
Was a flash of golden fire.

O happy living things! no tongue
Their beauty might declare:
A spring of love gushed from my heart,
And I blessed them unaware:
Sure my kind saint took pity on me,
And I blessed them unaware.

The self-same moment I could pray;
And from my neck so free
The Albatross fell off, and sank
Like lead into the sea.

Monday, February 23, 2015

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: