I was serious yesterday in my post about how I hate loathe despise having my picture taken. I know I can not be the only one. The selfie epidemic makes me feel inadequate. In some ways, left out. I watch the photo obsessed take pictures of themselves, and shudder with the thoughts of how uncomfortable and awkward I feel about myself. The only thing that trumps the selfie movement, is the ability to tag people in photos. Cruel friends tag me in the most horrendous photos. I quickly untag myself, and make a joke to them about how they must hate me or something, only I am not joking.
I avoid photos every chance I can.
I avoid photo obsessed people, they are not the same as photographers. I in fact, have lots of photographer friends. They are safe. No one wants to work when relaxing and hanging out.
I have cried over bad photos. Some of you can relate. Especially that horrendous school photo that is printed into everyone's yearbook. Permanently.
I had a rude awakening about the detrimental emotional effect of not taking photos. If you have not read about David, do so (gratitude day 10 David) because I mention him almost too much, but only almost, because no one could ever have too much of David's wisdom. After David passed away, and I realized I had never taken a photo with him, after a decade of being friends, it was a tough lesson to learn. I would not have cared what I looked like in that hypothetical photo, I just wish it wasn't hypothetical.
When you have kids they really help you avoid photos because you and everyone else can focus on taking and sharing photos of them. I do not want my kids to wonder where I was during their childhood.
I have even come up with piles of excuses not to have my photo taken. I do think people should be more conscientious and respectful of this, because my goodness people are pushy about photos, but for me it is time to stop avoiding the camera.
I no longer want to be so uncomfortable in my own skin, that I do not want photos of myself to exist. In a youth and beauty obsessed society, it is so hard to feel good enough if we base our value on our appearance. In my opinion this is even worse for women. You can never be young enough, thin enough, pretty enough; in essence you will never be perfect enough, and you will constantly be reminded of your imperfections through media, and advertising.
I was also serious in my post when I said I am working on this.
So, as uncomfortable and vulnerable(oh so very vulnerable) I feel about this. I am making a change. This isn't just for me. I do not want to pass any of this baggage, even accidentally onto my children, especially my daughter. So, I am just going to get rid of this baggage.
As part of my 2015 revamp movement, I am going to start taking more photos of myself, and having more photos taken of me. I will not promise that they will all be as raw as the ones tonight, but I will not photoshop myself into a super model. I do not even know how to do that in the first place. So here is to the start of my own Fearless in My Own Skin Movement. If you are struggling with this as well, feel free to join in, comment and link to your blog, or add photo comments to the Lotus Rock LIfe Facebook Page with the hashtag #Fearlessinmyownskin.
Thank you as always for your support! My heart goes out to everyone else who struggles with taking and having photos taken of themselves. Now is the time for change.
So without anymore chatter. Here are my selfies. What I look like late at night after hours of taking care of my three littles. No filters. No foundation. Just me with my hair a little messy, getting ready to work on casts and blog.
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Showing posts with label life uncensored. Show all posts
Showing posts with label life uncensored. Show all posts
Monday, February 23, 2015
Sunday, February 22, 2015
32 Things
Well, let's make being 32 official.
1. I was born in Mineola N.Y. I used to say 'you guys' when I was small. I've seen home videos and I have heard my New York accent, that is long gone. I sang Bruce Springsteen, my Father worked in the city, and part of my heart lives there still. I had never heard anyone say Y'all until I met my soon to be Aunt when I was 6. I was mesmerized by this beautiful Southern Woman. I have lived in South Florida the majority of my life. I do not have words for this place and at this point nowhere really feels like home. It is very transient here, a melting pot stuck in the center of concrete, beaches, humidity, bad drivers, and voting mishaps. It never ceases to be uninteresting though.
2. I was fearless as a child. My parents called me Wild Woman. I used to jump into the bathtub headfirst (that might explain a lot). I work daily at finding that inner wild woman.
3. I am the middle child and the only girl. I don't think I ever felt ignored or any of those typical middle child issues everyone talks about. I wanted to be famous when I was little. I would get all dressed up, sing, dance, and give out "movie kisses" when I was little. I was sort of hard to miss. I also never shut up. I mean even more so than now.
4. I am pretty free- spirited. Definitely a dreamer. Innovative, and Imaginative. I am not afraid to feel emotions. I have to bring myself back to reality at times, which can cause me disappointment. I wouldn't change this though because it is what helps my creativity. I was blessed with parents that made me super responsible, disciplined, and hardworking.
5. I have never been drunk. I have never smoked a cigarette, nor have I been under the influence of illicit drugs. Yeah I know. The addicts in rehab have already told me way too many times how much I am missing out. I think I am crazy enough without any of that. Plus I am pretty sure I am not blessed with the buffer most of you all are, and my body would freak out on me.
7. I am left handed. I grew up before this politically correct movement took over and there might have been one pair of left handed scissors in the classroom, and you would have to share with all the other lefties. That's ok, it is how I met my kindergarten boyfriend. I finally figured out how to cut things straight not too long ago.
8. I have had migraines since before I could talk and have some really interesting medical conditions. I make doctors work for their money, but it isn't something I let define me for too long before I stubbornly keep trekking forward.
9. I love childbirth, pregnancy, babies, breastfeeding, and how amazing the female body is. Motherhood is an amazing journey. Childbirth is truly one of the most powerful things I have ever witnessed, both through my own births, and being present with other women for theirs. It is why I went back to school for my nursing degree. I really want to be a midwife. We shall see what the future has in hold. I think we lose the sacred spiritual process of birth in our westernized litigation happy society. It isn't always rainbows and butterflies, but it is raw and full of so many emotions. Life is such a delicate, beautiful, and amazing gift.
10. I am embarrassed to say I have never been out of this country, but I chat with people all over the world daily. One day, this will change. I have either been in school, raising kids, or doing both at the same time for all of my adult life.
11. We have hosted exchange students. I will blog about more of that one day. It is definitely an amazing experience.
12. I really enjoy working out. Like a lot. I have always been doing something : ballet, dance, running, yoga, and now I lift weights. I like working out so much, it makes me a happier person. My friend mentioned the other day "you are in quite the cheerful sarcastic mood today." To which I replied "I went to the gym, it is like my Prozac."
13. I am not even sure of the name of my favorite color. It is somewhere in the seafoam, aqua, robin's egg blue family.
14. I hate having my picture taken. Loathe. Despise. Social Media makes that even more difficult. Wake up and check FB"You have been tagged." Yeah, you hate me if you do this to me. The whole selfie epidemic. I am working on this issue. In the meantime, when can another one of the other fives senses dominate our lives?
15. I can lick my elbow. I have many other talents, but this one which in no way required any mastery of skill on my part, seems to interest others.
16. I am a little bit of an overachiever academically speaking. I have always worked really hard to do well in school. I spent high school involved in so many academic and extracurricular activities, it is too much to list it all right now. This isn't always a good thing. I spent most of my twenties in school. I have a BA in Psychology a certificate in Women's Studies and a BS in Nursing School. It was a one year accelerated nursing program. I had to withdraw 7 weeks shy of graduation because of complications with my second pregnancy. I went back and finished that last semester though with straight A's. Yeah, don't do that with 2 kids, 3 and 15 months old. Not smart. Not smart at all. It is sort of like hell actually. I am definitely not done with my education.
17. I think too much. Several years ago, I would have been annoyed if someone had said this, but it is true, I think too much.
18. I have been teaching yoga since I was 17. The first class I taught was how I met my dear friend David, He was the real teacher. You can read about him here and here. I taught yoga all over the place and have so many stories. I even taught yoga in drug rehabs for 4 years or so.
19. I hate strong smells and dirty fingernails. We all have our things.
20. I have too many hobbies and interests: reading, music, instruments, dancing, crafting, painting... it goes on and on and on. I will never be bored.
21. I make belly casts, in case you missed that.
22. I like making pretty things. Pin all the pretty things. Make all the pretty things.
23. I have strong spiritual beliefs. I am super science minded, but I feel science has its limits and I believe there is so much more to us than our bodies. I have experienced that spiritual connection to another person, and the universe. I can't chalk that up to some chemical phenomenon in my brain. It is one of the most powerful overwhelming experiences.
24. I never close lids tight. Is this a left handed thing, an absentminded thing or should we examine it deeper and say it is a physical manifestation of difficulty finishing things (see thinking too much thing)? Whatever it is, I have learned that it seriously annoys the person I am married to, not calling anyone out here.
25. My taste in music is all over the place. I just really really love music. I always listen to music when I am working out or creating.
26. I have had so many jobs. Crazy ones. So many jobs it is almost concerning, but you have to get through all that college somehow.
27. When I was 21 a painter asked if he could paint me naked. I used to work for a shipping company and he would ship his art through the company. He was extremely talented and gay. He was not hitting on me. My ex-husband would have had a fit, it is definitely a regret of mine.
28. The Princess Bride has like a cult following with my age group, and I hate that movie. I will always hate that movie because it scared the crap out of me when I was little. That life sucking machine, enough said.
29. I have a thing for dragonflies. It is complicated. They are beautiful. They are very symbolic to me, let's just leave it at that.
30. The story behind my kids' nicknames on my blog. Bean, my Mother gave him this nickname when he was 6 months old, which was around easter time. He was a very chubby baby. She said he was like a big round jelly bean, and it stuck ever since. She also gave Tadpole his nickname. My daughter's real middle name is Wren. There is a lot of folklore around the Wren, the 'King of Birds' After everything I went through pregnant with her, I just felt like she was small yet fierce. She was still thriving in a difficult environment. It simply fit. All of my children's middle names have a lot of meaning behind them.
30. I make up songs for my kids. I have been making up songs since I was quite small. The first song I can remember making up when I was just three went something like this, "I'll be yours if you'll be mine, twinkle babe." I came across a book with short poems in it and it had something similar written in it. Crazy. I would go around singing songs I made up and regular songs on the top of my lungs. Not much has changed, I just do it around my family and no longer in public. My poor family.
31. I have amazing friends and family. I mean really really awesome inspiring incredible people in my life. I am even blessed enough to be the Mother of three of these incredible souls.
32. My biggest fear today is not dying empty enough. Les Brown's quote about the graveyard being the richest place on earth... I am living to die empty.
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1. I was born in Mineola N.Y. I used to say 'you guys' when I was small. I've seen home videos and I have heard my New York accent, that is long gone. I sang Bruce Springsteen, my Father worked in the city, and part of my heart lives there still. I had never heard anyone say Y'all until I met my soon to be Aunt when I was 6. I was mesmerized by this beautiful Southern Woman. I have lived in South Florida the majority of my life. I do not have words for this place and at this point nowhere really feels like home. It is very transient here, a melting pot stuck in the center of concrete, beaches, humidity, bad drivers, and voting mishaps. It never ceases to be uninteresting though.
2. I was fearless as a child. My parents called me Wild Woman. I used to jump into the bathtub headfirst (that might explain a lot). I work daily at finding that inner wild woman.
3. I am the middle child and the only girl. I don't think I ever felt ignored or any of those typical middle child issues everyone talks about. I wanted to be famous when I was little. I would get all dressed up, sing, dance, and give out "movie kisses" when I was little. I was sort of hard to miss. I also never shut up. I mean even more so than now.
4. I am pretty free- spirited. Definitely a dreamer. Innovative, and Imaginative. I am not afraid to feel emotions. I have to bring myself back to reality at times, which can cause me disappointment. I wouldn't change this though because it is what helps my creativity. I was blessed with parents that made me super responsible, disciplined, and hardworking.
5. I have never been drunk. I have never smoked a cigarette, nor have I been under the influence of illicit drugs. Yeah I know. The addicts in rehab have already told me way too many times how much I am missing out. I think I am crazy enough without any of that. Plus I am pretty sure I am not blessed with the buffer most of you all are, and my body would freak out on me.
7. I am left handed. I grew up before this politically correct movement took over and there might have been one pair of left handed scissors in the classroom, and you would have to share with all the other lefties. That's ok, it is how I met my kindergarten boyfriend. I finally figured out how to cut things straight not too long ago.
8. I have had migraines since before I could talk and have some really interesting medical conditions. I make doctors work for their money, but it isn't something I let define me for too long before I stubbornly keep trekking forward.
9. I love childbirth, pregnancy, babies, breastfeeding, and how amazing the female body is. Motherhood is an amazing journey. Childbirth is truly one of the most powerful things I have ever witnessed, both through my own births, and being present with other women for theirs. It is why I went back to school for my nursing degree. I really want to be a midwife. We shall see what the future has in hold. I think we lose the sacred spiritual process of birth in our westernized litigation happy society. It isn't always rainbows and butterflies, but it is raw and full of so many emotions. Life is such a delicate, beautiful, and amazing gift.
10. I am embarrassed to say I have never been out of this country, but I chat with people all over the world daily. One day, this will change. I have either been in school, raising kids, or doing both at the same time for all of my adult life.
11. We have hosted exchange students. I will blog about more of that one day. It is definitely an amazing experience.
12. I really enjoy working out. Like a lot. I have always been doing something : ballet, dance, running, yoga, and now I lift weights. I like working out so much, it makes me a happier person. My friend mentioned the other day "you are in quite the cheerful sarcastic mood today." To which I replied "I went to the gym, it is like my Prozac."
13. I am not even sure of the name of my favorite color. It is somewhere in the seafoam, aqua, robin's egg blue family.
14. I hate having my picture taken. Loathe. Despise. Social Media makes that even more difficult. Wake up and check FB"You have been tagged." Yeah, you hate me if you do this to me. The whole selfie epidemic. I am working on this issue. In the meantime, when can another one of the other fives senses dominate our lives?
15. I can lick my elbow. I have many other talents, but this one which in no way required any mastery of skill on my part, seems to interest others.
16. I am a little bit of an overachiever academically speaking. I have always worked really hard to do well in school. I spent high school involved in so many academic and extracurricular activities, it is too much to list it all right now. This isn't always a good thing. I spent most of my twenties in school. I have a BA in Psychology a certificate in Women's Studies and a BS in Nursing School. It was a one year accelerated nursing program. I had to withdraw 7 weeks shy of graduation because of complications with my second pregnancy. I went back and finished that last semester though with straight A's. Yeah, don't do that with 2 kids, 3 and 15 months old. Not smart. Not smart at all. It is sort of like hell actually. I am definitely not done with my education.
17. I think too much. Several years ago, I would have been annoyed if someone had said this, but it is true, I think too much.
18. I have been teaching yoga since I was 17. The first class I taught was how I met my dear friend David, He was the real teacher. You can read about him here and here. I taught yoga all over the place and have so many stories. I even taught yoga in drug rehabs for 4 years or so.
19. I hate strong smells and dirty fingernails. We all have our things.
20. I have too many hobbies and interests: reading, music, instruments, dancing, crafting, painting... it goes on and on and on. I will never be bored.
21. I make belly casts, in case you missed that.
22. I like making pretty things. Pin all the pretty things. Make all the pretty things.
23. I have strong spiritual beliefs. I am super science minded, but I feel science has its limits and I believe there is so much more to us than our bodies. I have experienced that spiritual connection to another person, and the universe. I can't chalk that up to some chemical phenomenon in my brain. It is one of the most powerful overwhelming experiences.
24. I never close lids tight. Is this a left handed thing, an absentminded thing or should we examine it deeper and say it is a physical manifestation of difficulty finishing things (see thinking too much thing)? Whatever it is, I have learned that it seriously annoys the person I am married to, not calling anyone out here.
25. My taste in music is all over the place. I just really really love music. I always listen to music when I am working out or creating.
26. I have had so many jobs. Crazy ones. So many jobs it is almost concerning, but you have to get through all that college somehow.
27. When I was 21 a painter asked if he could paint me naked. I used to work for a shipping company and he would ship his art through the company. He was extremely talented and gay. He was not hitting on me. My ex-husband would have had a fit, it is definitely a regret of mine.
28. The Princess Bride has like a cult following with my age group, and I hate that movie. I will always hate that movie because it scared the crap out of me when I was little. That life sucking machine, enough said.
29. I have a thing for dragonflies. It is complicated. They are beautiful. They are very symbolic to me, let's just leave it at that.
30. The story behind my kids' nicknames on my blog. Bean, my Mother gave him this nickname when he was 6 months old, which was around easter time. He was a very chubby baby. She said he was like a big round jelly bean, and it stuck ever since. She also gave Tadpole his nickname. My daughter's real middle name is Wren. There is a lot of folklore around the Wren, the 'King of Birds' After everything I went through pregnant with her, I just felt like she was small yet fierce. She was still thriving in a difficult environment. It simply fit. All of my children's middle names have a lot of meaning behind them.
30. I make up songs for my kids. I have been making up songs since I was quite small. The first song I can remember making up when I was just three went something like this, "I'll be yours if you'll be mine, twinkle babe." I came across a book with short poems in it and it had something similar written in it. Crazy. I would go around singing songs I made up and regular songs on the top of my lungs. Not much has changed, I just do it around my family and no longer in public. My poor family.
31. I have amazing friends and family. I mean really really awesome inspiring incredible people in my life. I am even blessed enough to be the Mother of three of these incredible souls.
32. My biggest fear today is not dying empty enough. Les Brown's quote about the graveyard being the richest place on earth... I am living to die empty.
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Wednesday, February 18, 2015
Birthday Happenings
For all of you that did not know, it is my birthday today, and I had my blog post for today all planned out for a while. The title of this post is supposed to be 32 things. I was hoping to share 32 things about myself with you today, all organized in chronological order and everything. But, the day had other plans... imagine that for a mom of three littles (don't worry I will post it when I am finished).
Today, started out with my boys explaining how sick they felt, and how they simply could not go to school. I quickly realized it was going to me and all three kids all day. 'Happy Birthday to me, Happy Birthday to me' There went every, and all plans I had for today.
Those little manipulating dictators, lied.
Sure Bean's throat is red and swollen, and Tadpole's been having mysterious tummy aches, but before long they were fighting and running around like crazy, which means they would have been fine at school.
Don't worry, they are adorable and always redeem themselves. They could not wait to give me my gifts this morning. The boys picked them out and wrapped them all on their own. They are the sweetest. I adore them. See how cute they are!
These are the gifts Bean wrapped for me. Made my heart melt that he put so much effort into making my birthday special! "There wasn't enough paper, so I had to make the blue line, but it is the same color as the walls in your room, your favorite, so I figured it was OK." I love his explanations. Just writing this makes me want to run into his room and cuddle him. I won't be doing that because he is actually asleep in his own bed tonight, and I still have some of my sanity.
They really started perking up after presents: fighting, playing video games, needing me to help them with everything.
Do not worry, I got them back, I took them to the pediatrician.
Only in retrospect, I think this became more of a punishment for me. While getting ready to leave and I was going to this pediatrician appointment put together no matter what. Besides it being my birthday, and I refuse to go out of the house being completely frumpy, there is a really great story about this particular doctor we were seeing today, that I will share in the very near future.
Wren had a dirty diaper but I just needed to do a few more things and then I would change her. Dumb mom decision and every seasoned mom knows this. I was just thinking "one more minute, I am almost done". Naturally she sat down on the tile, and her diaper started to leak out the sides. I will spare you the toddler shit details, let's just say I should have changed her right away. She then decided she needed to breastfeed, right now, because she was tired. Of course, she fell asleep for her afternoon nap. Of course I had to interrupt her nap, because of getting in and out of the car. This always makes for a fun day!
So when we made it inside the pediatrician's office they were done. Wren was shrieking with excitement, sitting on the floor, drinking from her sippy cup and then spitting her water out of her mouth onto the floor, screaming after I took the cup away, and so on. While she was doing her thing, the boys were bugging me to play games while I was trying to answer the medical assistant's questions (did I mention they had books to read), ask over and over when we would be finished, Tadpole asking when it was his turn because only Bean was being seen, and Bean kept complaining about how hungry he was, even though I told him to eat lunch a million times before we left.
For those of you without kids, this is completely normal. Trust me.
When we arrived home, I was pleasantly greeted with the aroma of my dog, who had gotten sick to his stomach while we were out, because all 7 pounds of him decided it would be a good idea to eat coconut oil that spilt on the floor earlier. Anyone want a smelly old Yorkie?
I had to frantically get everything cleaned up because I was not canceling the one thing I had planned for myself for my birthday: my at home haircut.
Only now my home stunk.
So, for those keeping tabs that was shit surprise twice in one day by different species.
Rock took all three kids shopping while I got my haircut in peace. It is awesome that he now voluntarily takes all three kids places these days and is so relaxed about it. Now that is serious mom porn. If you spot him in real life, please, please, please do not tell him how amazed you are he is brave enough to do this. No one tells me that crap when I lug them everywhere. I have worked really hard training him to think this is completely normal for men, as should the rest of you. Instead, snap a picture and show your husband so if he hasn't already he can join the movement.
My haircut was such a treat, and my hair looks fabulous!
Because there wasn't enough excitement for one day, I started getting a complex migraine. Those are always fun. Suddenly my thoughts are all jumbled and I start feeling really sick, and nothing inside my brain is doing what it is supposed to do properly. It is very similar to a stroke.
See all of my awesome gifts?! Bean bought me pearl bracelets because he wanted to buy me jewelry. He is going to be one awesome husband one day. Tadpole gave me Ollie the Octopus and they both picked out paints for me, a sketchbook, and truffles. I am so blessed.
Luckily I felt well enough to sit down for cake and craziness with my family. Today, like most of my days was hectic, crazy, and all over the place, but I love every minute of it. I asked Rock for a surprise for my birthday. Well, yesterday was surprisING. He told me my surprise is happening on Friday. I will keep you posted.
There simply isn't a better birthday gift, than waking up as the Mom of these three beautiful souls. Happy Birthday to me. Oh, and as my present to all of my readers, I finally removed the CAPTCHA from my comments section. Now it is a lot easier to leave love.
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Tuesday, February 17, 2015
What's Holding You Back?
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Image Courtesy of Gualberto107 at FreeDigitalPhotos.net |
In second grade, we all had to participate in the presidential physical fitness test in gym class. Now I am very determined or as some might describe me, stubborn. So of course, I wanted this award. So one overcast cold day, we all went outside to run the mile. I had on my knockoff keds, because I didn't own athletic sneakers. I was very coordinated child. I rode a bike at 3, without training wheels and was in dance, but sports, sports I was completely uninterested in sports, and all sports that involve balls to this day. They leave left-handed me looking like the biggest spaz.
We started to run and I can still remember breathing the cold air in and out of my lungs as I raced my classmates. I came in first. Me? I might have been the most surprised by this. One boy walked up to me and informed me that "I would have beat you, but I did not have my right shoes on today." My first introduction to what happens with the male ego's when a female kicks their ass. I not only beat the entire class, but as a second grader, I was the fastest girl in the entire elementary school, and thus began my running career.
I took being an athletic runner very serious. My body to me was an amazing tool that I used to excel. I competed a lot over the years. I was not the best, but I did very well and much of my identity was in my running. When I would psyche myself out mentally, I knew I needed to condition my thoughts. When my body quit on me on the height of my performance ability, I went through a very hard time. I always find my way back to running though. This long history lesson was to bring you to the point of my blog, and why what I am about to share affected me so much.
I had a dream the other night.
I had a dream I was competing in a 4X4 relay race. For those of you not familiar with track and field, what that means is there are 4 teammates and each member runs around the track for one lap (400 meters), so 4 times around the 400 meter track. I used to run this race. It was the shortest distance I competed in...
I am standing on the track. The crowd is huge. I look down and I notice the track is like a gymnasium floor and I think to myself this is odd, but I don't have much time to focus, because there is a lot of commotion and everyone is staggering into position to start, except they are all facing the wrong way, and I can't figure out why they are planning on running the track clockwise, because you always run counterclockwise on a track. I am nervous. I haven't run in forever. Why am I the lead? That is the position you give to the second fastest team member. You want to start off a race with a nice lead; it encourages your other team members. These thoughts are racing through my head faster than I could ever run if I wanted to. Someone hands me a slippery blue metal cylinder. Oh, the baton. "Hold on to the baton." they shout. Yes, most important part of the relay, do not drop the baton. Switching off is essential to speed and not disqualifying. With a sweaty fist I grab onto that baton with all of my might. Someone shouts over a megaphone "all runners please turn around, and assume starting position." I think to myself "finally someone around here knows what they are doing." Then the nerves take over. That feeling before a race that I haven't felt in years. Too late to keep focusing because the starting pistol is fired, and I am off.
Only something is wrong.
I am slipping all over the place. What is going on? I can't get a grip. I look down. I hadn't noticed before because I was too distracted by the odd gymnasium floor like track. I have nothing on but socks.
SOCKS!
I can't keep up with the other runners.
I am struggling. I am frustrated and so infuriated with these socks.
I know there is no way in hell I forgot my spikes. I know I did not put these socks on like this.
I am sliding and making little progress.
I start to hop and try to take off my socks, and run at the same time, all while holding on to the baton, with a death like grip. I get a sock to slide off. A coach is on the side, yelling at me encouraging me "DON'T GIVE UP. YOU CAN DO THIS. GET THE SOCKS OFF AND KEEP GOING"
I am grabbing and pulling at these socks with everything I have. Everything I am. I am determined for this to happen. I get the socks off and I start running as fast as I can and I am barefoot. I am pounding into the ground. The other runners are far ahead of me, but I am angry and I am on fire, and I wake up..
Lying in bed yesterday morning, I was flooded with so many different emotions; grief, frustration, disappointment, sadness.
Those socks.
They were on my mind all day yesterday.
Those socks symbolize so many things for me. I have been working on finishing things lately. It is part of my revamp 2015 project that I have not had the chance to share with you all yet because I have been so busy working on it. Those socks are a huge symbolism for my health issues: I did not put them there, but I am doing everything to rip them off, and run barefoot and free.
What are your socks?
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Thursday, February 12, 2015
Another Conversation in the Car
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Image Courtesy of dream designs at FreeDigitalPhotos.net |
Can you make a heart with your fingers? Bean asks Tadpole and I.
"Like this?" as Bean shows us how to do it
I show him my heart shape with my hands.
"That's a Valentine's Day heart, not the shape of a human heart." states Tadpole
"I know. A human heart looks like this." as Bean makes a fist with his hands
I cleverly pull up images of the human heart on my phone, and show them an illustration. I see an actual human heart in my search results and decide to show them this picture as well. I am very passionate about educating my children about their bodies: how their bodies look, how their bodies function, their health, and their responsibility for their health.
"How did they get that heart out of a person?" asked Bean
"well, there are several ways." I start to explain..
"Are they dead?"Bean interjects
And here come more of those hard questions...
"Well, that depends. Sometimes they remove your heart that is unhealthy and give you a new one."
"Where did they get the new one from?" asks Tadpole
"Sometimes when people die, they can donate their organs and save someone else's life. Then they can take out someone's unhealthy heart, hook them up to a machine that pumps their blood for them, and give them a new heart."
"Oh wow." says wide-eyed Bean
When the machine is pumping blood for the person, is that blood donated, like why we donate blood or their blood?" Bean asks.
"It is their blood, and they use donated blood ,but donated blood is given to people for many different reasons."
"I don't like when we talk about this stuff." Tadpole interrupts
I think I'll save the cadaver story for another time.
What sort of conversations come up in your car?Pin It
Sunday, February 8, 2015
It's Never Just Cold Feet
In the beginning, I would dread filling out paperwork because EVERY LEGAL DOCUMENT FOR THE REST OF MY LIFE, would remind me of the one mistake I made in my twenties (technically I was 19), that would follow me around forever. I wanted to be the person who makes these forms, so they would embarrass everyone else too: Were you the kid that ate paste in Kindergarten? Did you wet the bed? Have you ever slept with a person, and didn't know their name? Are you high right now? Have you ever stolen anything? Have you lied, cheated, acted like a complete asshole for no good reason? Do you litter? Have you ever woken up with your head in the porcelain throne covered in your own urine after a night of one too many drinks?
Until I am in charge, most forms will not ask you these questions. However, every single legal form I will ever fill out for the rest of my life states: Please list all former names what I felt like they were really asking me was, please share with us all, one of your biggest mistakes. "This shit again." I thought in my head, as memories came flooding back. I always wanted to fill in witty answers like, his ass made this mistake too, and he doesn't have to fill this part out you sexist patriarchal assholes.
When college started, I didn't go live in a dorm, because I didn't want to be around my incredibly smart friends who would take up partying, getting drunk, rushing, tail-gating, skipping class, and all the other activities freshmen college students take up after being let loose by their overbearing parents. A bit judgmental, don't ya think? However, this is how most of my friends spent their freshmen year in college. I taught yoga and went to class. I actually went to my classes, took notes, and had great grades. I also was introduced to a guy seven years older than myself, in a bar ironically, even though neither of us drank, and I have still never been drunk. Midway through my freshman year in college, I was engaged.
Oh yeah. You read that right, engaged at barely 19.
So, I have never had a really unforgettable night that I can't remember like the ones my friends had. You know, the facebook memes out there, stating how thankful they are that instagram, facebook, and twitter did not exist, or weren't like what they are today when they were doing all the crazy things in their college days.
Me, not me, I was going to raise the bar. Instead of all of that, I married the wrong person, and I am here to tell you folks, it is never just cold feet.
I was with my ex husband for a total of three years. People have fish that live longer than that. We were married for less than two years by the time our divorce was finalized. People have stuff in their freezer longer than that, but because I had made an official mistake that was a legal contract, it would follow me around for the rest of my life.
Today, I would've been married 12 years. February 8, 2003, 10 days shy of my 20th birthday. It wasn't even legal for me to drink the champagne at my wedding. We had spent an entire year planning a beautiful wedding. All along I had doubts. It was the elephant in the room the entire year. I kept a lot of it to myself. I figured it was normal. After all, this was a huge life event. Some of my close friends asked questions, which I also thought was normal. We went to couples therapy, I thought if we worked out issues ahead of time, we would be fine. We went through the Pre-Cana classes(Catholic marriage preparation courses). Secretly, I think I just wanted someone, anyone, to say, "You two are not compatible. This is not a good idea. This isn't either of your faults, I just recommend you both don't get married." It never happened. At least not that blunt.
As I woke up the morning of my wedding,I had a feeling in the pit of my stomach and this mysterious bruise on my chest, even my body was trying to tell me, "You aren't listening to your intuition." I knew something didn't feel right. That feeling had been there for a while, but I had kept pushing it farther down. I had made this commitment. I had planned a wedding for an entire year and the day was here. He was a good guy. We had bought a home. We were stable. This wasn't some unplanned, young irrational love affair (that wasn't the kind of person I was). I kept reminding myself of all of this. The truth that so many things weren't right was still hovering over me. That pit in your stomach, that unsettling feeling. That feeling is never just cold feet.
Cold feet, I think I now understand where that term comes from. It is the feeling when you are anxious, anxious with excitement about your wedding and marriage. Anxious with the idea of it being a momentous once in a lifetime event. Anxious that you might mess up your vows in front of everyone(if you are a shy person). Anxious that this person you love so much is committing to spending the rest of their life with you. Anxious because you are making a commitment to someone you love so much, but you will have to learn how to love the way they need to be loved over the course of your marriage, even greater, deeper, and more than you know how at this moment. The expression "cold feet" is not in reference to that unsettling feeling in the pit of your stomach, that you can't calm no matter what you have tried to do. How do I know this, because I've experienced both.
Our wedding day, like for most couples, was a whirlwind and was over before I knew it. I tried to convince myself everything was fine, and this was going to work, but that unsettling feeling would not leave, no matter what I did. I tried. I tried really hard. I am not sure when it happened, because that feeling was inside for so long,(I was so afraid to let it out), but at some point out it came. I had made a big mistake. I had made a big mistake, and the only way to fix it was to fail. I hate failing. I hate giving up. I am as stubborn as they come. I not only made a mistake, but I was going to have to admit this to myself, to my husband, my family, and my friends. Even if I never went into any detail, the failing of my marriage was enough. It was one of the most difficult life lessons thus far.
Pin It
Thursday, February 5, 2015
When the Sun Burns Out
I drive my kids to and from school every day. The crazy rush in the morning to get myself and three littles out the door with all of their stuff and make it to school on time is always fun. The toddler resisting getting dressed and sometimes continuing to fuss on the way there, the complaints from the older children: "I don't like this song." "He's touching me again."... You get the picture. If that was not enough to put you over the edge, there is always the parent drop off/pick-up line, i.e. idiots on parade. Where parents turn into animals, cutting one another off and breaking all traffic laws to get snowflake to and from school. American parents everywhere have heard this story more than once.
But, this is not what this post is about. If you need something humorous today read the post I wrote the other day(Birthday Wish List ). This post is about something a little different that happens on these car rides.
This morning Bean, who by the way is now 8, and no longer wants to be called Bean (but this is my blog and he has no say here) asks, "Mommy what will happen when the sun burns out"? "Well Liam when the sun burns out, scientists believe that it will suck itself in, and then it will expand and start bursting parts of itself out, and destroying everything in its path, including earth." Bean: "So no life?" "No Bean, no life, but no need to worry about that because scientists have done a lot of research, and they do not expect this to happen for billions of years." Liam: "I don't want to die and go to heaven." Tadpole, "Yeah that sounds terrible." "Well, that will be a long time away, and I will be there waiting for you." Tadpole: "Yea because you are old, and older than us." "Yes, yes I am, and if you get there before me, which I hope never happens, you can show me all around. You know before you were born, you were not here, and you don't spend time worrying about what happened before you were born. A lot of people are afraid of dying, because they don't know what is going to happen." I reach back and touch Tadpoles leg, because at this point I am tearing up a bit and I want to comfort them, and I don't know if I am succeeding at all. "Maybe you were afraid of being born, but look what happened, you entered the world and now you are a part of this amazing family we have. We just have to spend our time on earth loving each other and enjoying our lives." I am really holding back tears I think about all of this. Death is something I have had to think about more often than most people my age, because of my health issues. It is so much harder to deal with when I am thinking about my beautiful children and they are voicing their concerns and fears around death.

We arrive at their school and they get ready to get out. I kiss them both and tell them that I love them
very much and I hope they have a great day learning and having fun. As I drive off, Wren starts to fuss because now she is alone in the car. I reach back extended my arm as far as I can. She takes her hand and grabs on to my two fingers with all her little might. She just wants to know I am there. She wants to feel my touch. To know that she is safe and loved. As she hold onto my fingers every so often my hand slips a little from the bumps, and she grabs a little harder to make sure I am not going anywhere.
I am lost in thought about the conversation I just had with my boys, and the overflowing amount of love I feel as Wren's little hand hold onto mine. My heart is in this car every morning and I love these car rides. The hectic shuffle stops mattering. Time slows down a little, everyone's attention is captured, and we have this deep conversations. I realize that the most difficult questions I have ever been asked in my entire life, are not from professors or experts questioning me, but from my small children and with all my might I will do my best to answer them correctly, as honest as I can and as lovingly as I can, because this, this is the best and most important job I have and ever will sign up for.Pin It
Monday, February 2, 2015
Birthday Wish List
1. Ear filtering device (patent pending) a device that filters out screaming, fighting, whining, and all forms of aberrant complaining. Instead I want to hear child laughter, friendly playing, baby giggles and all things that support my crazy idea of having three children. I suppose it can also filter through true emergencies. Not the type my kids think are emergencies (always while I am nursing the baby to sleep): "Mommy Mommy I NEED YOU, where are you? ""SHHHHHHHHHHHH, I am putting your sister to sleep!" "But it is really important, I NEED daddy I can't beat this level on this game, when is he coming home?" "THAT IS NOT AN EMERGENCY" "but but but but""GET OUT OF HERE"
Yeah, none of that, you know what, screw the emergencies altogether.
2. A freeze gun so that my children immediately stop doing insane things to injure or possibly injure themselves, such as running in the house, trying to pick up their sister, standing upside down on the couch, jumping on the bed, jumping off of things, or my favorite, standing on a ride-on toy to reach the counter and make themselves food without permission while I am tending to their little sister (just last week, I kid you not, and of course he busted his ass). Readers without children under 20 thinking "wow she needs to lighten up." First time pregnant mothers "she has to be exaggerating" NO, and No (sorry sweetie it's too late for you, and your days are numbered).
3. Bread without the crust. Where did my child even get the idea that the crust could be removed? I certainly did not teach this picky sensory child of mine this was possible. So the person that sent their kid a sandwich to school without a crust owes me this gift. Get busy, time is running out, because I no longer want to stand in my kitchen wasting my life peeling off crusts so that he can come home with an uneaten sandwich anyway, "It felt, looked, smelled funny." Starving kids child, there are starving kids! So what is better than sliced bread to this mama, a crustless one.
4. A no filter doll. Yes please! One that I can take everywhere with me so when people in stores look at me and make obnoxious comments like " You really have your hands full!" No filter doll will immediately reply with "No shit captain obvious, and unless you are offering help, shut up." One of my favorites, as I walk into the gym after getting all the kids to school and I made it there :"You look tired!" No filter doll: " #$#%#! You must be an a$$hole to say that to a woman with three kids, but my owner isn't as much of a one to tell you that. Get a clue she will probably look tired for the next 20 years and then she will be old. Compliment her, or shut up moron!"
5. Three pairs of ear muffs -to place over my kids ears for no filter doll use. Come on, you were thinking "What a bad mom she'd let that doll say all of that in front of her children!?" I am one step ahead of you. Trust me, I am really trying to do a somewhat good job at this mothering thing.
5. A clone. What is the point of hiring a babysitter for a break, when you have to work twice as hard to earn that break? Feed the kids early. Bathe the kids. Pump milk. Straighten up the house ( i.e. hide piles of shit). Take a shower. Frantically find an outfit that works. Stop to breastfeed baby. Ruin only outfit you could put together. Frantically clean off spit up from your only outfit because you really have nothing else to wear. Write down all of the emergency contact info. Straighten up the mess your kids made again while getting ready. Go out exhausted only to come home to children that could not go to sleep without you and are going to be such angels in the morning. NOT. Hopefully you get the idea. Now imagine a clone. "Hey me, I am going out tonight, it's your turn. See you later sucker!"
6. This Coat.
7. These gorgeous accessories to go with the amazing coat, of course. A woman always needs accessories.
5. Three pairs of ear muffs -to place over my kids ears for no filter doll use. Come on, you were thinking "What a bad mom she'd let that doll say all of that in front of her children!?" I am one step ahead of you. Trust me, I am really trying to do a somewhat good job at this mothering thing.
5. A clone. What is the point of hiring a babysitter for a break, when you have to work twice as hard to earn that break? Feed the kids early. Bathe the kids. Pump milk. Straighten up the house ( i.e. hide piles of shit). Take a shower. Frantically find an outfit that works. Stop to breastfeed baby. Ruin only outfit you could put together. Frantically clean off spit up from your only outfit because you really have nothing else to wear. Write down all of the emergency contact info. Straighten up the mess your kids made again while getting ready. Go out exhausted only to come home to children that could not go to sleep without you and are going to be such angels in the morning. NOT. Hopefully you get the idea. Now imagine a clone. "Hey me, I am going out tonight, it's your turn. See you later sucker!"
6. This Coat.
Because I swear even though I live in South Florida, this coat is absolutely necessary. I'll clean the house in it if that is the only chance I will get to wear it. I will clean my house in this coat and heels if my husband is reading this and that will entice him to buy me this coat (I swear babe). Seriously I want this coat.
7. These gorgeous accessories to go with the amazing coat, of course. A woman always needs accessories.
8. A one up mom detector. Oh you know you want one too! You know, when you get together with a bunch of moms and that one obnoxious mom that wants to play one up. One up mom: "Does she sleep through the night yet? Me: How old is your little one? One up mom: "oh snowflake is only 6 months, I know it is hard to tell because he is already crawling, saying Mommy, can sign ten signs, and waves bye-bye. He is so advanced." Me: Smile
Me: How is snowflake doing? Wren said bye-bye for the first time the other day, it was so adorable!" One up Mom: "Oh snowflake and I have been working on his trilingual skills for several months now. He knows 25 words in Spanish, English, and Mandarin"You get the idea. So all I want is a handheld device that detects these women right from the start. Avoid. Avoid. One up Mom. Do not initiate conversation.
9. World Peace and the end of all pain and suffering. Well, isn't that what all good people wish for? Seeing as this is the most awesome birthday wish list of all time, I needed to make sure I added this. But, seeing as this is my birthday list, can we start this whole world peace/pain and suffering thing, with curing all of my crazy diseases? I mean it is my birthday, and enough about you, for once I want to talk about me. Me. ME. ME. MEEEE.
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Image:http://darkproxy.hubpages.com/hub/Feminism-under-review |
10. What I want most though, is a Tardis, so I can slow down time and soak in these amazing years with my children, or go back in time and relive them again. Although the days can seem so long, the months and years fly by. It is crazy how much faster they fly, the busier you are. Being a Mother has truly changed my life for the better. I feel beyond blessed to be surrounded by these three souls. Constantly surrounded. Twenty-four hours a day, seven days a week. Literally. From early in the morning, days filled with meals, driving, mommy and me, Cub Scouts, diaper changes, breastfeeding, singing, playing dancing, homework, reading, bathing and more. To waking me up in the middle of the night by standing in front of my face like the kid in The Sixth Sense, as I wait for my oldest son to utter "I see dead people" (that will be the day I die). He even resembles Haley Joel Osment some, so you can only imagine the relief when instead I hear "Can I sleep with you?" To the milk queen demanding to be breastfed all. night. long. I said truly blessed and my goodness, I meant it.
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Image: AMY RATCLIFFE |
Saturday, September 20, 2014
30 Things About My Invisible Illness You May Not Know
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"Because my illness does not define me." |
30 Things About My Invisible Illness You May Not Know
I stumbled across a site on accident the other day, invisibleillnessweek.com and read about the 30 Things Meme for invisible illness week which was Sept. 8th-14th this year, so I am a little late, but I decided I wanted to participate anyway because I feel strongly about supporting causes others with chronic illness have started.
1. The illness I live with is: Ehlers-Danlos syndrome-hypermobility type and Postural tachycardia syndrome (POTS)
2. I was diagnosed with it in the year: I was diagnosed with migraines as a young child. I also now have severe allergies that have caused a reactive airway disorder.I found out I was diagnosed with POTS in 2002 and never informed of such. I was diagnosed with EDS and POTS in 2013 through an elimination process of what I do not have. Who knows if my doctors will change their minds a bit, but so far this is the closet they have come for explaining the dysfunction my body often creates.
3. But I had symptoms since: Most of my issues started in 2002.
4. The biggest adjustment I’ve had to make is: Learning how to let go and accept myself fully, sickness and all. I was always very type A and I would push myself and overwork myself until I would get sick. I am trying to learn to scale back, and accept that I do not have control over what my body is going to do from day to day. With accepting myself, learning how to let go of the judgment of others and not living up to their expectations. I have realized that there are a lot of people who are never going to truly get what I deal with day to day, and that I really am doing my best.
5. Most people assume: That I am better because my issues seem to flare really bad and then back off enough that I am much more functional, so people don't understand that this is one long chronic illness because "I look so healthy." Some even think that nothing is really wrong with me, that it is all excuses, and if there is something wrong, it is in my head. The best thing my neuro ever said to me was "well what is wrong with you is in your head (referring to my dysautonomia issues and migraines), but it isn't in your head the way they think.
6. The hardest part about mornings are: On bad days, it is the brain fog, and shaky feeling I get when my blood pressure, heart rate, and body are not cooperating. It is really bad if I don't sleep enough. What makes it so hard is I still have to get up because three awesome little people depend on me.
7. My favorite medical TV show is: I only watch three shows because I really do not watch TV. So the closet thing to a medical show is Call the Midwife.
8. A gadget I couldn’t live without is: my phone
9. The hardest part about nights are: Depends on the night. Night is sometimes when I feel my best. I think it has to do with lying down so my body is no longer fighting gravity and I start to get energy, but I know I need to go to sleep because I have to be up early. Other nights the hard part is when my nervous system is so out of whack and my heart is racing, who can sleep through that? If I am having joint pain in my hips, headaches, wrist pain or something the insomnia from being in too much pain to sleep or stay asleep is horrible.
10. Each day I take __ pills & vitamins. (No comments, please) I take prenatal vitamins, sometimes magnesium, and sometimes fish oil, sublingual immunotherapy (SLIT) for my allergies, allegra sometimes, and very very rarely my Xopenex inhaler. I really do not take drugs which also leads people to believe nothing is wrong. This is a personal choice, but until I think there is a drug that the benefits will seriously outweigh the side effects, I have no interest. I am also breastfeeding and that is non-negotiable for me and the drugs that would help are pretty intense.
11. Regarding alternative treatments : This word annoys me, why are pills now the primary mainstream treatment. This is one thing severely wrong with our medical community, but I will save that for another day. I am what I term a lifer in physical therapy. I started going three years ago and what a huge relief from pain I have experienced. I would say I went frm being in pain 85% of the time if not more to about 20-30%. I also condition train. I am in the gym a lot exercising. The more conditioned I am, the less symptomatic my POTS is on a regular basis. I still have really bad days but if I let myself become de-conditioned, every day is a really bad day. I also drink gatorade to keep my sodium elevated I really want an alternative to gatorade because I think it is horrible for you. Have any ideas please share in the comments. I am reading the autoimmune protocol and the Wahls protocol. Those diet changes will be the next step. I am always reading about alternative treatment options but I had backed off on everything while I was having a lot of diagnostic testing done.
12. If I had to choose between an invisible illness or visible I would choose: I have thought about this a long time, and I think about the Taoist farmer story and the who knows what is good or bad. I think this is a grass is greener on the other side question and I just want to take the best care of my own grass. I have what I have. I wish no one had to deal with illness visible or invisible, but it is what it is and every condition has negatives.
13. Regarding working and career: This is so complicated, and my health has seriously affected my goals. I became a yoga instructor at 17. I completed my bachelors degree in psych and after I had my first son decided I wanted to be a midwife, so I went back to school and completed my bachelors in nursing. I also became a doula and a belly caster. My biggest issue is all of my dreams require a lot of physical labor. For now, while I heal from this last pregnancy, I am bellycasting and taking care of my three amazing children. I am seriously contemplating becoming a counselor as I love serving others as they grow on this life journey. I also am working a great deal on blogging, as I love to share knowledge, stories, and experiences.
14. People would be surprised to know:That although I love socializing and being around people, I have developed some social anxiety from being sick. I was confined to my home for most of last year, and when I had to go places I had to be taken there. I also do not like getting sick in front of people and I don't always have control over when my POTS is going to start acting up bad.
15. The hardest thing to accept about my new reality has been: Is not always having my independence and having to depend on others.
16. Something I never thought I could do with my illness that I did was: Survive the natural birth of my daughter.I had both of my sons naturally, one even at home, but those pregnancies seemed to improve my condition, but this last pregnancy I was worse than I have ever been and I am still amazed by her birth. It definitely was one of the most intense experiences of my life.
17. The commercials about my illness: Are there even commercials?
18. Something I really miss doing since I was diagnosed is: Taking my independence for granted.
19. It was really hard to have to give up: Yoga and Running. As a yoga instructor and a competitive runner this was difficult. I still run a bit to help with the POTS but nothing like before.
20. A new hobby I have taken up since my diagnosis is: Weight lifting. I started before I was officially diagnosed to try and help with my hip instability. Weight training has its pros and cons for my health conditions, but conditioning is not negotiable with my POTS and honestly I love to exercise hard and I found something that makes me feel as strong and invigorated as a 7 mile run: deadlifting, squatting, benching, etc. I love still being able to feel strong.
21. If I could have one day of feeling normal again I would: I would fill my day with activities with my kids. Maybe run around on the beach with them, fly kites, take a trip to an amusement park. Then I would spend the evening out on a date with my husband. There is no way I can fill my day with activities from morning to night anymore and some days these things aren't possible at all. I want to be able to do them all without the worry of using up all of my spoons or borrowing ones from the next few days
22. My illness has taught me: Empathy. Patience. Acceptance. I have also learned to question my judgments of others more, even about the simplest things.
23. Want to know a secret? One thing people say that gets under my skin is: "how can you be so sick, you look so healthy and you are in amazing shape!" The undermining comments sometimes disguised as a joke, aren't funny: "maybe it is just female hysteria", "maybe you just need a vacation", and on and on. The hardest one I am dealing with right now is the comment "Well now that you've got your girl, you can be done." I know no one means anything mean by this comment, but I have not emotionally come to terms with this being our last baby. We were never planning on only having two children, and had a third because we were trying for a girl. I wanted a big family. Working on that wants and needs thing.
24. But I love it when people: Are people. Even with the comments above that stir emotions I don't exactly love, I love people. I love hearing everyone's stories and who they are. I love knowing what people are passionate about; what moves them. I love intellectual conversations.
25. My favorite motto, scripture, quote that gets me through tough times is: "I am Spirit." Whenever my body is not cooperating, or I am sitting through another horrible diagnostic test, or the pain is unbearable, I repeat the mantra I am spirit. It gives me strength. It reminds me that my body and the sensations it creates aren't all that make me who I am, and sometimes I have to take myself out of body to get through rough times.
26. When someone is diagnosed I’d like to tell them: Do not allow others to create doubt because they do not understand and can not see your illness; you are worth more than that. I spent too many years doubting and belittling myself, and often hiding from others what I was experiencing because I was told nothing was wrong even though I knew there was no way most people spent their days feeling the way I did. Also, find a way to grab onto Hope and use it to live this life passionately using your limitations as strengths.
27. Something that has surprised me about living with an illness is: How many times you truly can redefine yourself and grow.
28. The nicest thing someone did for me when I wasn’t feeling well was: The nicest? There definitely is not just one. Just thinking about this makes me feel so loved and extremely blessed. I have some amazing friends and family. I know who is going to be there for me, and I have seen it with my own eyes. I do not fault others who are not able to do this, we are all on a different journey. But, let me tell you, I have some truly awesome friends and family. I know people who; will sit with me when I am sick, visit me in the hospital every day I am there, drive me to doctors appts., watch my kids last minute because I have to go the hospital or the doctor, bring me meals, drop off hand me overs of baby clothes, pick up the phone any time, throw me a baby shower even though I was the worst guest of honor sitting there sick, drive from other states to be with me when I am sick, stick up for me to nasty nurses, fly from other states to be with me when I am sick, sit with me while I am scared and crying, help me with caring for myself when I can't, and they never remind me of it later because they know how embarrassed I get. See, I have amazing people in my life. I am so incredibly, wonderfully, and truly blessed.
29. I’m involved with Invisible Illness Week because: I accidentally stumbled across the founders page as I was googling for one of my next project ideas, and I felt compelled to participate to contribute to her cause.
30. The fact that you read this list makes me feel: Hopeful
Pin ItThursday, September 4, 2014
Are You Feeling Better?
This was turning into a very long facebook post, and I decided maybe it was time to start writing again... "
"So great to see that you are better."
"So glad you are healthy again."
I am beginning to hear comments like this daily, and I appreciate that people notice, that yes, after how incredibly sick I was last year, I am doing much better. Several years ago, I would not have said much more than, thank you and still today I say the same. Often because it is easier and they have already made the statement. If instead someone were to ask the question, "Are you feeling better?" the most simple response to this question is, No.
The truth is although I am not as sick as I was, I may never be "better." Ashamed, embarrassed, not wanting to be labeled as a hypochondriac, and being doubted, left me covering up what I was feeling. I felt isolated and alone. Today I can't say I will be better, but what I can say, is that I am going to be my best, and that is all the hope that I need.
I am sharing this with you all because I think part of being and doing my best, is sharing, in the hopes I can make a difference, and in the hopes I can create more awareness.
There are too many people who suffer in our medical system without a voice. They go from doctor to doctor, test to test, without answers. Our system excels for the most part, with treating acute illness, but when it comes to chronic illness, we are leaving people helpless and hopeless.
I have had medical issues my whole life, but as a child most of it was minor inconveniences, like my migraines which began when I was 3. When I was 19, this changed a great deal, and I started having all sorts of bizarre, "you must be crazy" kind of symptoms. I was scared. I was positive something was wrong, and doctor after doctor, test after test, I was repetitively told "you are as healthy as can be" but I certainly did not feel healthy. I was treated like a guinea pig. They would prescribe me cardiac medications while telling me nothing was wrong. I quit going to doctors. I gave up on them, when I realized they had given up on me. Don't ever give up on yourself.
After a year and a half, my symptoms became more manageable on a daily basis, and would more or less come and go. Several years ago, I started having many more neurological symptoms, so I went back to doctors and was still left without answers.
What upsets me the most, was that I was diagnosed with a condition called POTS({postural orthostatic tachycardia syndrome) and was never told about the diagnosis.Yes, you read that right, the doctors never bothered to mention that maybe this was what was making me feel like I was going to pass out all of the time. Last year, pregnant, I became so symptomatic, there was no more avoiding or hiding what was going on. I was too sick and I needed help. It was also finally obvious something was seriously wrong. The doctors still had no answers. I started researching more on my own, and that was when I learned about dysautonomias and more specifically POTS. I went searching through all of my old medical records and found that in fact, when I was 19, I was diagnosed with POTS. Words can not express the plethora of emotions this stirred in me.
The awareness of rare genetic diseases, and autoimmune diseases, even in the medical community, is frightening. I didn't even know there were conditions such as dysautonomias, and I had an A average in nursing school! My cardiologist for the past 11 years only provided me with the explanation of, "yeah, this is just one of those things people are diagnosed with when we don't know what is wrong with them." 11 years later, extremely sick and pregnant, this was an unacceptable response and it took a lot of self control not to lose it on him. That is just a small glimpse of how ignorant some doctors are about this. Luckily I found doctors who took very great care of me while I was pregnant, and I am so grateful for them. I believe because they listened to me and treated me accordingly, my daughter and I were able to have such a positive outcome.
I spend a great deal of time reading research articles because I have to advocate for myself, and unfortunately for Bean as well. Although Bean so far does not have POTS, he does seem to have another disorder I have also been diagnosed with. This disorder is Ehlers-Danlos Syndrome (EDS), the joint hypermobility variant. My EDS diagnosis and POTS diagnosis explain a great deal of all of my "you must be crazy" kind of symptoms, and they typically coincide with one another. The more I read, the more I understand myself and everything I have felt and feel. Bean and I have very different symptoms of EDS, as it is a genetic condition and affects everyone a little different, but it is nice to know what is going on.
I can sit here and say I wish I knew then what I know now, but there is no point in living in that space. I know through my own experiences as a patient, and also through my education, that the best way to advocate, is to be informed. I have been sick so often since graduating from nursing school, I often wonder the purpose of all of that stress, if I can not help others. However, I am thankful for my education because it provided me with tools to help myself. In nursing school, I learned the importance of caring, informed consent, and treating the whole person. This drives me to want to spread awareness. No one should have to go through this journey we call life, feeling alone.
I never knew what to expect when I finally had a label for what was wrong with me. I desperately wanted answers for so long, but I never really thought what it was going to provide me with.
What it did do, was it made my health issues very concrete. I realized this was not just going to disappear, the way it appeared in my life, completely uninvited. My husband one day looked at me and said, "Did you think after 10 years this was just going to go away."
"I looked at him and said "yes." That yes was so genuine, and I guess it was naïve.
That was the day it all started to really sink in. I have a weakness. I have a vulnerability. I have a label. This is not completely temporary. I am going to have to stop making myself sicker by stubbornly pushing myself to "suck it up", as my body suffers. So in some ways, I am thankful I did not know what was wrong, as there are experiences I gained from this.
Another thing having a diagnosis did, was it brought me to the realization that I am not alone.
"Oh my goodness, there are so many people with these conditions." Now I know many of them. At first
this made me sad, especially discovering that many of them are struggling daily. The part that really made me sad was the thought that there were people out there undiagnosed, being told nothing was wrong, and desperately wanting an answer.
What this diagnosis did not do, was take away my hope. It is this hope that was what finally made me decide to be more public about this.
When I was 19, I felt hopeless. I went to doctors. I depended on them. I put my faith in them. I took the medications they gave me, and became sicker. I had no medical knowledge, and when they couldn't provide me with anything, I began to lose hope. So many people around me decided nothing was wrong because the doctors found nothing and so often people use to tell me it was going to be ok. No one wants to be told they aren't feeling what they are feeling. No one wants to be told it is going to be ok, when in fact it is not ok. My hopelessness was the worst. No one should be left feeling hopeless.
Now, hope is what gets me through my most difficult days. Hope is what I find when I feel weak, exhausted, and ready to give up. There is always a reason to be hopeful, even if it is simply just the idea of hope itself. I am not here to be a positive example for anyone else, or live up to anyone's standards of how I should "do" being sick. I am not less because I am sick. I am not less because I have days where I come very close to feeling hopeless and I have little to give. I have bad days and good days just like everyone else. I am here because if my ramblings can help anyone, or at the very least give them hope, I feel the need to share my journey.
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"So great to see that you are better."
"So glad you are healthy again."
I am beginning to hear comments like this daily, and I appreciate that people notice, that yes, after how incredibly sick I was last year, I am doing much better. Several years ago, I would not have said much more than, thank you and still today I say the same. Often because it is easier and they have already made the statement. If instead someone were to ask the question, "Are you feeling better?" the most simple response to this question is, No.
The truth is although I am not as sick as I was, I may never be "better." Ashamed, embarrassed, not wanting to be labeled as a hypochondriac, and being doubted, left me covering up what I was feeling. I felt isolated and alone. Today I can't say I will be better, but what I can say, is that I am going to be my best, and that is all the hope that I need.
I am sharing this with you all because I think part of being and doing my best, is sharing, in the hopes I can make a difference, and in the hopes I can create more awareness.
There are too many people who suffer in our medical system without a voice. They go from doctor to doctor, test to test, without answers. Our system excels for the most part, with treating acute illness, but when it comes to chronic illness, we are leaving people helpless and hopeless.
I have had medical issues my whole life, but as a child most of it was minor inconveniences, like my migraines which began when I was 3. When I was 19, this changed a great deal, and I started having all sorts of bizarre, "you must be crazy" kind of symptoms. I was scared. I was positive something was wrong, and doctor after doctor, test after test, I was repetitively told "you are as healthy as can be" but I certainly did not feel healthy. I was treated like a guinea pig. They would prescribe me cardiac medications while telling me nothing was wrong. I quit going to doctors. I gave up on them, when I realized they had given up on me. Don't ever give up on yourself.
After a year and a half, my symptoms became more manageable on a daily basis, and would more or less come and go. Several years ago, I started having many more neurological symptoms, so I went back to doctors and was still left without answers.
What upsets me the most, was that I was diagnosed with a condition called POTS({postural orthostatic tachycardia syndrome) and was never told about the diagnosis.Yes, you read that right, the doctors never bothered to mention that maybe this was what was making me feel like I was going to pass out all of the time. Last year, pregnant, I became so symptomatic, there was no more avoiding or hiding what was going on. I was too sick and I needed help. It was also finally obvious something was seriously wrong. The doctors still had no answers. I started researching more on my own, and that was when I learned about dysautonomias and more specifically POTS. I went searching through all of my old medical records and found that in fact, when I was 19, I was diagnosed with POTS. Words can not express the plethora of emotions this stirred in me.
The awareness of rare genetic diseases, and autoimmune diseases, even in the medical community, is frightening. I didn't even know there were conditions such as dysautonomias, and I had an A average in nursing school! My cardiologist for the past 11 years only provided me with the explanation of, "yeah, this is just one of those things people are diagnosed with when we don't know what is wrong with them." 11 years later, extremely sick and pregnant, this was an unacceptable response and it took a lot of self control not to lose it on him. That is just a small glimpse of how ignorant some doctors are about this. Luckily I found doctors who took very great care of me while I was pregnant, and I am so grateful for them. I believe because they listened to me and treated me accordingly, my daughter and I were able to have such a positive outcome.
I spend a great deal of time reading research articles because I have to advocate for myself, and unfortunately for Bean as well. Although Bean so far does not have POTS, he does seem to have another disorder I have also been diagnosed with. This disorder is Ehlers-Danlos Syndrome (EDS), the joint hypermobility variant. My EDS diagnosis and POTS diagnosis explain a great deal of all of my "you must be crazy" kind of symptoms, and they typically coincide with one another. The more I read, the more I understand myself and everything I have felt and feel. Bean and I have very different symptoms of EDS, as it is a genetic condition and affects everyone a little different, but it is nice to know what is going on.
I can sit here and say I wish I knew then what I know now, but there is no point in living in that space. I know through my own experiences as a patient, and also through my education, that the best way to advocate, is to be informed. I have been sick so often since graduating from nursing school, I often wonder the purpose of all of that stress, if I can not help others. However, I am thankful for my education because it provided me with tools to help myself. In nursing school, I learned the importance of caring, informed consent, and treating the whole person. This drives me to want to spread awareness. No one should have to go through this journey we call life, feeling alone.
I never knew what to expect when I finally had a label for what was wrong with me. I desperately wanted answers for so long, but I never really thought what it was going to provide me with.
What it did do, was it made my health issues very concrete. I realized this was not just going to disappear, the way it appeared in my life, completely uninvited. My husband one day looked at me and said, "Did you think after 10 years this was just going to go away."
"I looked at him and said "yes." That yes was so genuine, and I guess it was naïve.
That was the day it all started to really sink in. I have a weakness. I have a vulnerability. I have a label. This is not completely temporary. I am going to have to stop making myself sicker by stubbornly pushing myself to "suck it up", as my body suffers. So in some ways, I am thankful I did not know what was wrong, as there are experiences I gained from this.
Another thing having a diagnosis did, was it brought me to the realization that I am not alone.
"Oh my goodness, there are so many people with these conditions." Now I know many of them. At first
this made me sad, especially discovering that many of them are struggling daily. The part that really made me sad was the thought that there were people out there undiagnosed, being told nothing was wrong, and desperately wanting an answer.
What this diagnosis did not do, was take away my hope. It is this hope that was what finally made me decide to be more public about this.
When I was 19, I felt hopeless. I went to doctors. I depended on them. I put my faith in them. I took the medications they gave me, and became sicker. I had no medical knowledge, and when they couldn't provide me with anything, I began to lose hope. So many people around me decided nothing was wrong because the doctors found nothing and so often people use to tell me it was going to be ok. No one wants to be told they aren't feeling what they are feeling. No one wants to be told it is going to be ok, when in fact it is not ok. My hopelessness was the worst. No one should be left feeling hopeless.
Now, hope is what gets me through my most difficult days. Hope is what I find when I feel weak, exhausted, and ready to give up. There is always a reason to be hopeful, even if it is simply just the idea of hope itself. I am not here to be a positive example for anyone else, or live up to anyone's standards of how I should "do" being sick. I am not less because I am sick. I am not less because I have days where I come very close to feeling hopeless and I have little to give. I have bad days and good days just like everyone else. I am here because if my ramblings can help anyone, or at the very least give them hope, I feel the need to share my journey.
Monday, January 27, 2014
Rock's Birthday
The past week and a half has been incredibly busy. Rock celebrated his 31st birthday and we had an awesome time celebrating at home. We made him a bunch of awesome birthday gifts, cooked him dinner, and baked him a white cake with buttercream frosting, his favorite. I am not sure if it is even worth making white cake from scratch. I haven't tasted one I thought was amazing and the boys agree too as they asked several times why we couldn't have a chocolate cake instead.
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The best part of the evening, was the eco wish lantern. Everyone needs to get one and try it. They are so inexpensive and really made his birthday memorable this year. I had originally purchased it to light into the night sky the day of Wren's birth, but after I had to birth in the hospital, this just wasn't possible. So we all went out into the chilly air, made wishes, and watched as the lantern floated up into the night sky. The photos aren't great because I took them with my phone and was savoring the experience with my family, but it was truly magical.
This is one of the homemade gifts the boys made. I got the inspiration from pinterest and then modified them to make them more personable for our family.
Finally here is a sneak peek of the gift Wren gave to Daddy. It isn't quite finished and I will be sure to show you all the final product in the near future, but I couldn't resist showing you her adorableness!
So if all of that above isn't a good enough reason for why I have not been blogging every day, we are also in the process of applying to private school for the boys, I am planning my girlfriend's baby shower, I have still going to lovely doctor appointments, Wren needs to have a helmet made for her head (OH MY are those things EXPENSIVE!) because instead of having flat head syndrome the back of her skull is protruding outwards too much ( medical terminology created by yours truly), and of course all the regular day to day stuff a mom of three kids endures!
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