A mother's love

There has been an incident lately that has brought to question my opinion of my mother and her support of me. It's very ridiculous that I have to make a post about this right now; but, at the same time,  it's really no big deal and I was planning on a post like this anyway. Hopefully this clears some things up and makes everything even more apparent.

Growing up, my mother was my role model. (Well, her and my dad, but this isn't about daddio.) As a perfectionist, all I ever wanted was her approval--constantly. I needed to hear it almost everyday. She was on a pedestal for me. Her opinion, her thoughts, her appraisal was (and partly still is) priceless. I remember thinking there was nothing my mom couldn't do. I mean, everyone thinks there's nothing mommy doesn't know or can't do. I'm telling you there was really nothing she couldn't do or didn't know. Seriously. I still think that today. Don't try to tell me otherwise; you'll be wrong.

Now this isn't to say we didn't clash heads. We did, a lot. It's hard to see eye to eye all the time with a very strong willed and confident woman, especially when you're trying to be the same.

That and, admittedly, in my younger years I was a shit. Seriously. I look back and I wonder who this unempathetic shithead was. I was very angry and didn't like myself, stemming from trying to be perfect and just not being comfortable in my own skin. I was in a lot of pain, physical and psychological, and I hated everything--including myself. A lot of it, especially the depression, is also correlated with having chronic pain and a chronic disorder (like EDS). It's a miracle my mother put up with me. Hell, it's a miracle I still have friends from that era of my life.

I also had a flair for the dramatic. Everything was the end of the world. Everything brought me to tears. I was incredibly neurotic. I wonder, sometimes, if it's because of the chronic pain and the crazy symptoms that made no sense. Again, why are those childhood friends still friends with me? Y'all should get your heads checked!

Despite everything, mom was always there. Always. She always taught me to be positive, speak your mind, love yourself first, value education, love and respect everyone the way you would want, and so much more. She taught me compassion and acceptance for all people. It's because of her that I'm able to be so positive, love everyone unconditionally, and be the person you see in our support groups. Through her, I learned that hard work can accomplish anything. Through her, I learned that altruism and putting your heart into everything you do is more rewarding than any paycheck or acknowledgement. Through her, I learned that your family will always be there and love you, no matter if you clash heads or not. Through her, I learned what it meant to be a woman--a woman to be proud of. A woman everyone should strive to be.

My mother is an accomplished and amazing nurse. When something goes wrong, I always call doctor
mommy. She seems to know more than most doctors I know. And yet, she missed my EDS.

It was brought up that the way I phrased an earlier post regarding my EDS symptoms, being told to just suck it up, could be interpreted negatively. I did not mean it to be so. My point was someone like my mother could miss the symptoms. Additionally, the symptoms are so strange that it begins to look like something in your head. People tell sufferers to get over it or suck it up because there's simply no way these things could be happening. I mean, if you had told me some years back that your hip was consistently dislocating and hurting, I would tell you that you're wrong, nuts, and to just suck it up also. My point was not meant to be negative to my mother; my point is that even someone incredibly compassionate and trained may not even know what EDS is and will likely dismiss it.

I am all about full transparency. I want to admit something I have never said online or told anyone on here. I will admit, for a good week following my initial diagnosis, I had some resentment towards my mother. How could my mother miss this? My entire childhood? How? Why did she ignore me? Why didn't she believe me? Luckily, I have an amazing pain specialist who pointed out that even my doctors missed it. Even I missed it. Why wouldn't she? She reminded me that my mother is human. I need to stop blaming her for missing it and start focusing on how much she did for me. I forget, sometimes, that mom doesn't know everything. It's hard to realize your superwoman is a human. She doesn't have superpowers, it just seemed like it as a kid.

I can only imagine how much the diagnosis must have hurt my mom too. I mean, she missed it. They are partly her genes. We all missed it. She's a lot like me (well, I'm like her). I'm sure she thought she knew everything when it came to her kids--hell, to me she did. I imagine it would be hard and heartbreaking to be told that you missed something so big. How could someone miss such a big thing? The truth? Quite easily. EDS is repeatedly under-diagnosed because of the myriad of symptoms. But that isn't to say someone who missed the diagnosis should be blamed. I don't harbor anything other than love, admiration, and still a lot of hero worship for my mother, unconditionally.

When I told her, she broke down on the phone. She broke down in a way that utterly gutted me. My mom doesn't cry like that. She cried like I told her I was dying. I decided, right then and there, to shelter my loving mother. She reads my Facebook, she reads this blog, we talk on the phone, etc. I will not be telling her the scary details, though. I will not bother her with every little thing that pops up. She doesn't need that. She's been through enough. She knows if it's something big, I'll come to her. The point is she supports me unconditionally. I don't have to tell her everything, or even anything, to know that she will always be there.

The real point? Education is needed. There were times, admittedly, that my mother likely didn't believe me. Is that a fault of hers? No. Hell, I didn't believe me sometimes either. Would you believe your dramatic child saying that she was always in pain? Would you believe her if she said her ankle always popped out? I wouldn't. It sounds ridiculous. All of this highlights a flaw in the system. A lack of education to parents and pediatricians. If more people were aware of the symptoms, this might have been caught. The more education there is, the less people will grow up thinking they're nuts.

The take home? I love my mom. I still hero worship her. She raised 4 kids with my dad so amazingly. Like it was nothing. She made us always feel loved and we never wanted for anything. And if you ever question my mother, her support of me, or my love for her... well, I have some choice words I will not say on a public blog. I'm keeping it positive and smiling so I will let it go.

Support and Positivity

This topic, a non-athletic one, is going to be a little controversial and could cause some problems, but this is my blog and I really need to get this off of my chest.

Very recently, a new friend with EDS joined a support group I'm a part of. This friend was recently on TV. She was sweet enough to bring awareness regarding EDS to a national crowd. This friend is Enedina Stanger. Beautiful wife and mother. She's honestly one of the sweetest and most grounded people I have had the pleasure of meeting.

Instead of thanking her, people critiqued her words, bullied her, and even asked if she even had EDS. This broke my heart. Even worse, this continued to happen in support groups. She was gracious and continued to try to explain things to people, even writing a blog post about this. But still, people are cruel.

I've seen the same thing happen to my friend Linda Li, who even started the group. Constantly people ask if her symptoms are as bad as she pruports. People will constantly undermine her, call her names, and even say she is drug seeking or lying for attention.

I just don't understand. At all.

Now I will admit, I am new to this disorder, having only been diagnosed less than 3 months go. But as an academic, as someone who in naturally inquisitive, I have learned everything I can about this disorder. I want need to know everything I can about this disorder. I am the type that has to know what is to come, especially when this disorder is so very terminal for some people--which it is.

As a result I joined groups, lots of groups. I added anyone and everyone. I asked questions. I sought answers. I did anything I could to get some answers.

And now I'm more confused than ever. 

Not by the disorder, but by the people. 

I don't get it. I actually had to step away from the group, at least for a few days. And let me tell you, I love this group. I spent hours days reading every single post that people made. I spent countless hours making responses, researching responses, and just being there for my fellow EDSers. Backing away from this group has broken my heart, even to the point of having to write this. I feel lost and I don't know what the answers are.

I have always been the positive type. I will try to do anything and everything for anyone who is hurting or needs support. I would, and have, risked my life for complete strangers who are hurting or being hurt. I put my heart and soul into everything I do and all I ask is that people understand that there is more than just them/their opinion out there. Apparently that makes me a horrible human being. Apparently that opens me up to some horrible commentary about my education level, my lifestyle, and my worth as a person. Additionally, just continuing to do what I have always done apparently undermines other people and is not welcomed. 

I understand a lot of the members in this group are in a lot of pain, are used to not being believed, and can often be very irritable and angry because of it. That does not excuse the behaviors I have witness and the way I've been treated. I have seriously never had my core shaken so greatly. I don't understand why people are so cruel and how they could think it is okay. A lot of them hide behind the guise of fairness--it is your opinion and should be allowed. No matter what, bullying should not ever be allowed. How people think this is acceptable is just beyond me. 

Is every group like this? Is this the not talked about side of having an illness and trying to be a part of a support group? 

Is this the reality I'm supposed to accept...because in no way am I ever going to accept this as part of my disorder or part of life. In no way am I going to ever let these toxic people be a part of my life again. So if you think that you need to judge and put other people down in order to feel better about having this (or any) illness, you can kindly walk out of my life. That would be best for both of us. 

Support groups are supposed to support. It's that simple. All of this judgment and assumption about people does not help move forward and certainly does not ease any pain or suffering. That simple. Love. The answer is always going to be love. 

Sticks and Stones (and Icy Hot)

Early this morning, operating on no sleep, I read this awesome article regarding how people with Fibromyalgia or Chronic Fatigue require about 48 hours to recover after a stressful event. I cannot speak to the validity of the article, the statistical significance of the 48 hours, but I can tell you I'm learning that EDS (and it's co-morbid syndromes) is like having a super bipolar body.

Friday and Saturday I spent most of the day in bed, unable to really move. Today I was operating at like a 4/10, which made me want to sing off of roof tops. I don't know how/when I'm going to pay for this, especially since I'm running on no sleep, but damn it was awesome. After a drive with the windows down, soaking in the air, I was ready to really start the day!

Sticks

As I alluded to previously, my supportive boyfriend is a martial arts instructor who owns his own business teaching martial arts. He practices many styles and every now and then he trains his amazing girlfriend.

Seriously, that girlfriend of his is pretty darn awesome.

It's been awhile since I've felt up to it, but today a client was running late and I felt great so we fit a quick class in!!

I know it seems strange, but there is something so freeing about Escrima/Kali/Filipino Combat Systems. I tthink I took to it because of my years in Drill Team doing short flags. It's just something I really like doing--swinging sticks through the air and making sense. It's like a dance. The safety dance. Not too long ago, I got to watch Inosanto teach it, twice. I still think of the classic Inosanto 21 foot rule demostration of knife vs. gun whenever I practice. It's really my slice of heaven and it felt so amazing to practice again. It felt so amazing to have the strength to!

After watching him train his student, we even went for a walk. It seems so small, but baby steps.

Overall it was an overwhelmingly good day, but I can't help but have one thing eat at me. I've become incredibly empathetic and it's so weird. 

Throwing Stones

Sometimes I really miss being an asshole. 

Today I found myself defending a position I didn't actually stand behind (holistic-type medicine), but I've become sensitive that those people may feel isolated and should not be singled out for ridicule. It's just not fair. You don't do that to people.

Oddly, before EDS I would've torn then a new one and I couldn't have given a hoot about anyone wanting to use alternative medicine. I am almost done with my PhD, I spend my life doing research, and I know most holistic medicine isn't supported by the research. But that doesn't mean anyone else should. And suddenly I find myself sensitive to that fact.

I guess I deserve it a bit. "Let him who is without sin cast the first stone" right? We like to throw stones around on the Internet. I guess I partly feel I need to make up for being an asshole and throw myself in the way to catch those stones before anyone accidentally throws one.

It's strange how much having openly chronic pain can change you. I've had this pain my entire life, but I kept it to bottled, so tight, so close to me that I became angry. I became so angry that I took it out on people on the Internet. If this happens to find its way to one of those people, I'm truly sorry. Well, to most of you. Some of you were assholes yourselves. (I'm not a saint guys.)

Finally, I had another realization.

Things really aren't that bad. Things aren't that big of a deal. Seriously.

It's the Internet. It's some people I will never meet and never care about. Let it go.

I've decided I need to always remember Steven and get through the day. 

In my 20s, we always had parties. We had this friend. We'll call him Steve. 

Whenever he would get really really drunk, he'd start jerking his gerkin. 

Didn't matter who was around, what he was doing. It was like his security thing. 

Some people suck their thumb, he jerks it. Sometimes with lube, sometimes none. 

We got really sick of it one time...and by we, I mean me (Asshole, remember?) 

I was over it. 

So this time, I offered him some lotion...

...and I handed him IcyHot. 

Picture a 20-something skinny blonde white boy

sitting in snow

crying that his balls were hot and cold at the same time

naked

as we hosed him down

in the middle of an Alaskan winter.

He never did it again.

If Steve could survive that, 

I can get through today.

No matter what. 

My balls aren't on fire and frozen in the snow.

Life is pretty grand. 

The first post is always the hardest (and the longest)

The first post to a blog reminds me a lot of your first kiss. No matter what you do, it's never going to feel right and it will never feel quite right, but it's a necessary evil.

Right now, I'm excited about it. I'm in the pre-kiss stage. I'm working on redoing everything: new blog, new Instagram name. I chose the name because it's what I want to embody. A fighter. An athlete. Healthy choices. Alive. Living. I'm no longer looking for a diagnosis. I have a diagnosis. The hardest part is accepting that it is never going away. In fact, it may only get worse. This may be the best I ever get. I need to stop waiting for things to end and start living again.

My story

For as long as I can remember, it's always been something with me. I used to complain, but I quickly learned that no one wanted to hear it. I took that as a sign that the pain I felt was completely normal and I was a complainer or a wuss.

As a baby, I was born blue. Sleep apnea. I spent the first two weeks of my life in the hospital. Then came asthma and allergies. Other than that, I was fine. Right?

I remember often rolling my ankles or randomly hurting myself. The injury was either in my head or I was just a klutz. I've always has those hilarious fingers that look like they are flying away. I was always double jointed and could do weird tricks. My knees always bent backwards. I always rocked at the flexibility part of any fitness test. What could be wrong?

As a kid, I was always a perfectionist. I had trichotillomania. I was sometimes depressed and even a self injurer. I was an anxious kid that was always on edge. Dramatic, worry wort, shy, clumsy, awkward, you name it.

I want to say that my first time really subluxing a joint was in Drill Team in high school. I swore on everything that I dislocated my hip. I remember something popping and me popping it back in. I told my mom and she brought me home crutches. Again, just suck it up. More than likely I was being ridiculous or a drama queen. It was probably just me overreacting, like always.

I went on like anyone else would. I pushed through high school, college, graduate school. I got sick a lot, but I figured that was normal. I gained weight easily because working out literally hurt. I slept a lot, but that was because I was fat and lazy. I had my body quirks--shoulders that popped out, wrists that always hurt, ankles that always rolled. This was all normal, right?

I moved to Alaska for college. Things started drastically change.

While in college, I was also in a few really bad car accidents. First I was hit by a suburban while biking on my awesome pink bike. About a year later, my friend ran a red light and I face planted into the windshield with my face and my shoulder (if you look carefully, that is my faceprint on the windshield). I hated going to the hospital and physical therapy. One PT told me that my hips just wouldn't stay put. I was also diagnosed with TMJ and myofascial pain syndrome. I was told my neck didn't stay put either. I had a small tear in my shoulder but that couldn't be causing the amount of pain I was in. I also broke a few toes over the time. I just wrapped them and moved on. I fractured my radius. Ace bandage and move on. I was determined not to be a wuss or a complainer. Just move on.

So I moved to DC for graduate school.

In graduate school, I was diagnosed with diverticulosis. I was hospitalized with diverticulitis for two weeks. In the hospital, I has a weird flare up of just immense pain. Couldn't treat it, couldn't figure it out. The hospital gave up. Maybe I was drug seeking or just afraid to go home. No big deal.

In April 2014, while getting my second graduate degree, I hit a tree with my bike while on the Mount Vernon Trail. Apparently they don't get out of your way. Once again, just a slightly separated shoulder. No big deal. The doctors couldn't understand why I hurt so much. I went back to work the next day, but something felt wrong. I didn't feel like myself anymore.

As time went on, nothing changed. I pushed on a put on a happy face, but inside I was dying. The pain wouldn't go away. It just felt like everything had changed overnight. I was exhausted all the time. I still worked out like crazy and pushed through, but something was wrong.

I started noticing little things. When I was lifting weights, I has to wear so many braces or else I swore things were becoming dislocated. I could no longer type for hours or else I was in insane amounts of pain. I tried to ignore it, but it started affecting my work, my life in general. I started hermitting, missing out of social situations and started sleeping more.

Eventually in November I lost my job. I was told it was because of my lack of productivity at work. I was immediately hired by my school to be a teaching assistant. In January I started that job, but something became really really wrong.

I fell ill and I fell ill quickly. Suddenly I wasn't able to eat. The pain was exponential. I pain was pinpointed. I honestly thought I was dying.

My first hospital stay resulted in no progress. They couldn't find a reason for the pain. They also couldn't control it. Once again, they thought I might be pain seeking.

The second hospital stay was worse. The internist decided I was depressed, anxious, and fat. She dismissed everything I said.

I immediately got an amazing PCP. He was determined to figure out what was going on and immediately started me on pain control. In March 2015 I started a blog while I was searching for a diagnosis.

For moments, brief windows of time, I would catch glimpses of who I used to be; flickers of the me that is fighting so deep inside. I get these momentary bursts of how life was before getting sick, smiles and laughter, hard work and accomplishments. These moments seem so much more cruel when followed by utter exhaustion from something as simple as doing dishes. Will I ever recover? Will that happy, productive me ever come back? I keep holding on to hope, but my grip is starting to fail.

All the tests kept coming back negative. Everything was going nowhere. 

And then we looked outside the box.

We looked at my joints. At my knees. At my fingers. I simply asked if this was normal, and bent my pinkie back. Suddenly we were looking for Ehlers Danlos Syndrome specialists. Suddenly we had a possible diagnosis. 

Fast forward to countless specialists. So many recent injuries. My wrists. I fainted and hit my face on the bathroom counter. My knee was hurt by a doctor wanting to see just how hypermobile it was. And I'm still trucking. 

The diagnosis? The list is still growing. So far it's Ehlers Danlos Syndrome, Fibromyalgia, TMJ, Diverticulosis. Possibly POTS/dysautonomia. Possible Chiari Malformation. 

I have an appointment on Monday, June 8 for a Cardio for the POTS. An appointment in July for the Chiari. We're still waiting on the genetic test to determine which type of EDS. We're also planning a sleep study. Everything is falling into place.

I, so far, have let everything control me. 

No more. 

This is my new start. This is the new me. I am learning to accept my EDS. I am learning to accept everything. 

It's just all so much. It's way too easy to stay down when you have a chronic illness. You have to accept that today may be the best you're ever going to be. It's not going to go away. It may never even lessen. 

At some point you have to come to term with the simple fact that this is pervasive. It's forever. It very well be what kills you. At some point you wake up and realize you're not the person you were before and never will be. 

Honestly, the chronic pain and the painsomnia is really one of the hardest parts. With the chronic pain and the painsomnia comes unpredictableness. I miss my friends, a lot. I rarely go out. I rarely have the energy to do anything. I miss a lot of people in my life, but not everyone has made an effort to stay. 

To those who stopped calling me, please don't blame me for the lack of contact--the phone works both ways. I'm okay with not being a priority in your life. I'm okay that you have had to move on. It's okay. I wish you the best in your future endeavors. I know it's not your job to understand what I'm going through, nor do I expect you to, so I completely understand you giving up. And I'm telling you that it's okay. Sometimes people take different paths in life. Maybe it's our time to go different ways. 

To those who have stayed, to those who keep calling and keep inviting me to things, thank you. Please don't give up. I do miss you. I truly do. Please understand I have to be a priority in my life right now. I have to be selfish. I'm sorry I haven't been open and able to confide in you, this is something I needed (and still need) to go through this on my own. Please understand. If I can't go out, I can't. I have to listen to my body. Please don't think it's anything against you. Right now it just has to be about me.

To my new friends, thank you so much for your support. Though we're just online friends, you are really priceless in my life. Some of you have changed my life in ways you cannot even fathom. 

Finally, to my amazing boyfriend (who probably won't read this), thank you. You've been there the entire time. You've believed me the entire time. You go to the doctors. You hold my hand. You got angry when they didn't listen. You held me when I needed it. You pushed me when I needed it. I don't know if I would've been able to do this without you. Thank you for going out and becoming a personal trainer to help pay for the doctors. Thank you for understanding I haven't been able to work--and not questioning it. Thank you for understanding that some days I just can't sleep because it hurts or need to sleep countless hours. Thank you, so much, for helping me find happiness again. Thank you for being you. I appreciate you more than you will ever know. 

As for me, now I am trying to learn to be the positive person I pretend to be online. I'm trying to figure out what I'm trying to do. I'm trying to discover who this new person is. I'm trying to rediscover myself. The one thing I do know is I'm going to live life to it's fullest. I can't keep hiding and being scared of what these disorders may hold for me. 

It's time for me to live again. And the first thing I want to do is get to the gym and find that happiness I had before. I've even managed to do a full workout. I even went beyond the workout and threw in my favorite--the leg press. 

I'm going to get back to working out. I'm going to get back to martial arts. I'm going to bike. I'm going to hike. I'm going to kayak. I'm going to do the things I love. Maybe not everyday, but I'm going to at least do them. I'll leave it at the gym and find myself again. 

So today marks the birth of the EDS Athlete. 

She who will be stronger than EDS. 

Stronger than any disorder.

She who is strong enough to live.

Welcome to my blog.

Welcome to my new life.