Out of Mourning, a New Resolve

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I am sorry that this smile is gone.

My beautiful, young, full of life cousin just passed away in her sleep. Ashley was nine years younger than I am. She passed away at thirty-three due to complications with her ongoing lung disease. She will be missed by so many. I really admired her spirit and determination. See Ashley has had lung problems all her life. She spent so many days and nights in the hospital being watched over by her poor Mom and Dad who worried constantly. She was a slight little thing as a kid and grew into a rebellious youngster. All of us are rebellious at one point but when you have bad lungs smoking and drinking are even worse. Luckily this time was short. She pulled it out quickly and then focused on her health. Ashley died being a wife, a devoted step-mom who undeniably adored her charge, a spitfire (crazy smart opinionated women run in my family) and amazingly a weight lifter.

It would have been so easy for Ashley to ruminate on the fact that she was born with a set of defective lungs. She could have sulked and stayed in bed, but she rallied and built a full life for herself. Not only that but she built her body up. She worked out steadily and ate well. She built up a business. To see her do all that with the body she was given, makes me feel inspired to do the same.

The past two weeks I have been requiring myself to do yoga absolutely every day. You know that hashtag #yogaeverydamnday? I haven’t really understood that because I feel like it has a negative connotation and yoga has always been enjoyable to me. This past two weeks I have been understanding it. There are days when I have had to crawl to my yoga mat and start by laying on the floor to stretch lightly. I slowly loosen my creaky muscles until I can move without pain. Then I move on to stretches that require all my muscles. It has become a requirement for all of my days. If I don’t do it then I will be in pain all day.

I think that it would be easier sometimes to just stay in bed. I have spent many days this year in bed with the pain and I am sick of it. I hope the ritual I have adopted will keep my out of bed for the foreseeable future. I haven’t tested this theory during my dark days when Aunt Irma visits, but I guess we will see. My physical therapy is working and I am so happy about it.

I think this new resolve is coming from a place of remorse for how much I have let my body sort of fend for itself against my vices.

Perhaps I can take up her mantle of good health. Maybe someday I can be someone people look at and say Hey, she had all that pain but she still put her health first. I hope so. I just have to keep making that uncomfortable walk/crawl to the mat every morning. If I can build on that. I might be able to follow her example.

Crash Toone

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This was one of my very high pain days! 

About three weeks ago, I had an appointment with a genetic counselor. I didn’t want to go, but I saw it as a stepping stone to getting my hysterectomy. With my fibroids and supposed Endometriosis, I thought this might remove my pain. My doctor said that she wouldn’t take out my ovaries unless I was at great risk of cancer. I can’t tell you how much that ticked me off. I was under the impression my ovaries were causing me pain. So what? I am supposed to go to this appointment to find out that I am at great risk for cancer? Really?

Well, it didn’t turn out that way. I refused to take the blood test. I don’t want to know if I am at great risk of ovarian or breast cancer. I really don’t. I also don’t want my DNA on file with some lab for them to test. The counselor told me I shouldn’t do it if I felt uncomfortable. So I didn’t.

So I went back to the gynecologist, who is also a pain specialist, who told me that there was no reason to get my ovaries taken out because my ovaries are not causing the problem. She is now telling me that I may not have endometriosis, but too tight pelvic muscles, IBS, and too much stress. Since I have heard for years that this pain is part of my reproductive organs, and this doctor’s office agreed a couple weeks before, I had a hard time believing this new information. It took her the better part of an hour and an intense examination to, sort of, prove it to me. Rather, I should say to get me to shut up and go away dismayed and disillusioned.

I walked to meet a friend who was there for me because we both knew this appointment wouldn’t have definitive answers. She and I talked and she amazingly enough comforted me as much as you can a person who is overwhelmed with emotions, and hasn’t really processed something. On the way home after leaving her I fell in a rather dramatic fashion on thirteenth in the middle of two restaurants outdoor seating. I did a slight somersault and knocked over some chairs. It earned me the nickname Crash, which I have to say I am taking a liking to. Husband says it’s shocking someone hasn’t said that before. Not only because I am unbelievably clumsy at times, but because I like to attack problems and even social situations with all the subtlety of a hammer. I think it makes me sound like a superhero Crash Toone.

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Part of the damage from my fight with the pavement

That was about two weeks ago. Since then I have been processing all this information and I have started physical therapy for pelvic pain. I have also had two of the worst weeks of this pain I have ever experienced. I don’t know if that means it is working or not. I have been on my pain pills most of the time but when I wasn’t I was crying from a deep engulfing depression. It’s been overwhelming. It has been isolating so I haven’t just stopped blogging until now but also haven’t talked to a lot of family and friends. I just had to work this out of my system.

See this new diagnosis I am holding as tentative. It requires me to go to three different doctors several times and change my diet, my exercise program, and my schedule. It is also very expensive. I could go through all of it and still be in pain.

My homework from my first physical therapist appointment is that I have to do ten upward dogs every two hours, and for three days write down my food intake and my waste outtake. That’s uncomfortable. I still have to make some other appointments. I know I should have more done but I promise you that I have been going through the worst pain in my life so far, and hopefully forever.

Last night I finally put on my big girl panties and decided to do attack this with more vigor. I am not going to be grudgingly going to my doctor’s appointments. I am going to be CRASH TOONE, attacking the pain. I am going to plan and write down everything I eat, cut out everything I need to, and do all my physical therapy. I am researching everything I can about all of these diagnoses, and going above and beyond. If this doesn’t fix me I might just have to camp out at my Doctors office until I get an answer. Crash Toone is done playing around.

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Crash Toone: Because superheroes should always have a red lip. 

What a Miracle is my Body

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This is me after a seven block walk. I sweat profusely.

So much of my life is built around distracting from my endometriosis pain right now. I watch TV or listen to music while reading. If I engage my mind enough then I can ignore the pain. It is only partially successful.

I realized, as I walked to the library, that distraction is how I’ve always gotten through exercise. I don’t like to sweat. It is uncomfortable, although I am working on that distaste. Exercise has always caused pain in my ankles and I’ve never been good at it. Today, I walked in the heat as fast as I could manage to the beat of my Lady Gaga Pandora channel. I used the beat of Pitbull’s Shake Senora to move faster and faster. By the time I made it to the library I was dripping with sweat and my pants were sticking to me. If there were such a thing as tiny men, they could have slid down my cleavage like a slip and slide.

This is in total contrast to my yoga experience. Every move in yoga has to be thoughtfully carried out. For one, my balance, as it stands, is horrible. Some of the poses require me to be on one foot or one knee. I have trouble with standing on two feet or balancing on both knees. I am learning and practicing over and over, but seriously have to concentrate. I have to feel every part of my body and muscles I didn’t know existed. Normally when exercising, I would try to ignore pain in my muscles or work through it, using the adage “no pain, no gain” or more likely I’d give up. With Yoga, if there is pain—I am doing something wrong. Not only do I have to concentrate on my muscles, hand and foot placement, and balance, but then there is the breathing. Yoga just isn’t the same without the breathing. The deep breathing brings in a sense of calm that I have never experienced with other exercise.

It amazes me the contrast. I love the difference. I believe that is why I love yoga. I love how I can totally immerse myself in the activity. I breathe in and out slowly and deeply. I free my mind of anything that doesn’t have to do with the pose at hand. When it is really good and I have focused enough towards the end of the practice I am more aware of what my body is doing than I have ever been.  By focusing intensely on what I am doing and making sure it feels good.  There is gain with no pain. Don’t get me wrong I feel strain on my muscles but I don’t feel pain.

I have always ignored my body because I have been told no pain no gain.  I wasn’t very good at sports because of my bad ankles, and I was never the type of body I wanted. I got told repeatedly by society, my family, and even “friends” I was the wrong body type. When I repeatedly fail at something, I tend to forget about trying it again. I have hated my body because of what it could not do. It could not be good at aerobics, softball, or volleyball. Even worse, It could not be skinny. Don’t get me wrong, it was thin at one time, just not the thin that was popular in my youth. It was curvy thin. I hated it. I wanted to be the woman who could wear pleated pants and poufy shirts a’ la Different World. I wanted to be Lisa Bonet.

I surely didn’t want to be me, with my curves and very strong muscled legs. I wanted to be like a reed in the wind. Then I became known for my curves and then abused because of them, and then I wanted to be a bulldozer, not a human.  So more and more I retreated into this body, and wore it like a coat, a covering for my soul but not something that affected my soul.  IF I could distance myself from my body then I would not be responsible for it or how it made other people think about me. I thought I’d focus on what I was good at, reading.

Recently, I have distanced myself so far from my body because it seemed mean to me: the pain my body brings me, the interruption to my day, and pushback of my goals. My body has been a bitch for quite a long time. (While some of that has been caused by me ignoring her, most of it hasn’t. Endometriosis can’t be exercised away. It can only be burned away or excised by a doctor). Trust me it wasn’t hard to get mad at my body.

Yoga has helped me to forgive her. Yoga has helped me see that this body people made fun of, that wasn’t good at sports, had weak ankles and poor balance – even she could be loved. At first yoga was another distraction from the pain but as I got into it, and as I started awakening the understanding of my bodies minutiae it started easing the pain. I started to realize that just like any love I had to actively participate in the caring for the object of my affection in order for it to thrive. Those balance issues are still there, but it works my ankles and they are getting stronger. I am so aware of my body, I can tell when I am going to start sweating. I feel the heat from within and I welcome it. For the first time in my life I welcome the sweat. What’s more is that the first time I did it, I was really bad at it, but the more I practiced –miraculously- I got better. For the first time in my life I got better at exercise. Each pose takes time to master, but when success comes I am overwhelmed with gratitude for my body.

It is only recently through yoga and my families help have I been able to figure out a way to celebrate what my body is capable of. I am super stretchy, more than the average bear. My body likes yoga, it craves it. I am a good swimmer. I am a good dancer, with a natural rhythm. My legs are super strong. I ride bicycles with ease. I am double jointed in my fingers, I do a mean downward dog, and I am working my way up to hour long yoga sessions. I am resilient. I fail at these poses but keep trying.  I am able to heal pretty easily if I take care of my body. I am finally able to see what a miracle is my body.

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Oh, and I can give good cuddles. Look at him smile. That’s some good cuddling.

 

 

You Can Take the Girl out of Oklahoma…

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This was how Oklahoma welcomed me. 

 

About a month ago I went to visit my family in my native state of Oklahoma. I was inspired by my family to move more and to enjoy the simpler things that I sometimes ignore. My family is extraordinary and every time I am around them it is as if I have been given new life. Sometimes it reaffirms who I am. Being away from my home state for so long sometimes allows me to forget what I have inherited and how deep those Okie roots run: the laid back sense of humor, master story telling, and the vein of gumption that runs through all of us.

It’s that tenacity and live wire like energy that is contagious. Inspiration to move and accomplish the physical is everywhere.

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Going to the grocery store with Mom is like an aerobics work out. I was still getting out of the car and she had a cart inside already. 

In the mornings Mom and I would do our perspective exercises. She does a video by Gilad, a very handsome, bulging, swarthy man. She’s done various videos of his for years. I don’t enjoy the aerobic videos so I went over to the corner and played my Pandora music channel and did yoga. This concurrent clashing music didn’t even bother us. At one point we discussed how this could be a metaphor for our relationship.  I said it is funny how we clearly like different things but still hang out because we love each other so much.

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We are so proud of my beautiful, smart, strong sis.

I was encouraged to walk by my sister Katie because she walks everywhere. We trekked all over the OSU campus before I had to take my shoes off and sit until someone brought the car to me. My feet were done but she was still going. I feel after 40 you shouldn’t have to suck it up.

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Yep, we even fed a horse! These people live super special lives.

My brother and his wife have a handsome five year old son named Caleb and he inspired everyone to get physical. Katie and I even risked and failed at cartwheels. That family spends most evenings outside in the sun after dinner riding bikes or watching Caleb ride his big wheels up and down the driveway. I got to ride bikes, slide down slides, fight imaginary wolves and run through the park. Caleb and I even had a session of yoga together. That was so fun. There are these children’s yoga videos on YouTube, and he loves them. A fifteen minute video story of going to an amusement park with a Hispanic penguin had me sweating!

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First time on a bike in years, can you tell?

 

While some of these attempts didn’t work out so well (one slide left me with a swollen and bruised thumb, another with two skinned knees, the cartwheel left me with a slightly sprained ankle, and I also got kicked in the head more than once while rough housing,) the fun that I had was more than worth it. I will never forget this trip because I learned I miss being playful. It is absolutely the best exercise. I miss that idea that my body is here so I might as well see what it can do. Seeing what my body is capable of is an activity I have neglected and it is actually fun. My new fitness goals are: being able to perform a cartwheel, AND get enough arm strength to walk only on my hands while someone holds my feet by the time I go back to Oklahoma. We tried it this time. While I could hold my brothers legs while he walked the living room, I couldn’t quite walk on my hands. I will though mark my words. I am doing planks every day.  If I can walk on my hands then maybe there is even a handstand in my future! Now that is exciting! Won’t my nephew be so proud of Aunt Danielle?

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I felt like this was the appropriate image for a mic drop…

Back Baby Steppin’

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This is me socializing in the park. Even my lunch dates require exercise now!

There so many exciting things are happening in my life right now. I am volunteering at the library, getting to know new people, writing more and exercising more. I have not had an episode of pain in two weeks. I am delighted. My husband is relaxed and I am making very small progress on all areas of my life. I am cooking, walking, and stretching a lot more. I am in the zone.

Something that is helping me besides being pain free for two weeks is this new deal I have with myself. If I do not write at least an hour a day, then I have to forgo my modem and give it to my husband to take with him to work. Without the router I have no internet and no TV because we have no cable. So I have nothing to research with while writing or entertain me while I clean. This is an even bigger motivator to jump start myself than the writing I am already doing. Once I get writing I get more excited about the writing. So this is just a jump start to get the fingers moving! It has worked. This week I have written every day.

I have also met my pedometer goal every day and done yoga three times. I even tried to do a yoga video called Power Yoga with Rodney Yee. Rodney Yee is a yoga instructor born in my native state of Oklahoma. (I just found that out!) He is a very handsome man who apparently only owns pants. These pants are made of spandex and are usually neon colors. I like his calm voice and dulcet tones, but I think I want to branch out. I think that I need something called Half Power because I had a lot of trouble doing those yoga moves so quickly. Downward dog –Upward dog — Downward dog –Upward dog —  Downward dog –Upward dog — Downward dog –Upward dog — Downward dog –Upward dog…sweaty sweaty sweaty sweaty but I was done when he got to Half-moon pose and fell over because my knee didn’t like it very much.  So I stopped but was proud of myself for attempting and making it about half way through. It’s been a long time since I even put in an exercise DVD. Actually I think last time I put a video in it was a VHS tape.

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Lynne my library lunch date!

I am also cooking more so my husband and I are eating fresh vegetables and fruits. I got back into making smoothies and eggs with veggies for breakfast. Leftovers for lunch and for dinner I am cooking fresh salads, veggie filled pastas and I make delicious veggie tacos.  I am not saying I haven’t had weird pizza roll dinners once or twice but I have been making great strides to getting my healthy habits back.

It feels like I am just bragging in this post but I feel as if I must after what I have been through lately. I am now looking forward to progressing but more importantly, the most encouraging development is coming back to the program feels inevitable. If I have to put my exercise plan on hold for a month because of pain and there be no doubt I will get back to it when I feel better, then that means I am officially a person who works out. It am not a poser. I am the real deal.

 

What Gives Me Hope

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Brad took this pic and emailed it to me saying, “My wife is so pretty.”

Today was a very good day. I woke up with no pain, husband made my favorite breakfast, and I got to volunteer with full energy, and then walked home as if I hadn’t a care in the world. It was one of those days when I have felt extraordinarily lucky to be alive because I have no pain. If I hadn’t had all these health problems I don’t know if I would feel this blessed, or maybe I am just extremely smart.

I don’t mean to brag, but I believe people who can see the good stuff, the sometimes referred to silver lining, are the smart ones. You know how they say that most comedians have gone through a dark time. I know that makes sense. Sometimes we have to go through the fire to appreciate the soul soothing rain. I know that I have read other people with chronic pain talking about how blessed and lucky they feel on the good days. It is just natural to soak it up, tilt your head to the sun, when you live in the shade most of the time.

Right now I am typing but also writing letters to my family and dancing to a Pandora channel filled with Korn, Metallica, and AC/DC. That’s my feel good music. I think that any day I feel up to dancing is a good day!

I wish I felt this way every day. I wish “Dirty Deeds, Done Dirt Cheap” could help me get out of my chair and giggle and dance when I am doubled over in pain, but as good as that song is…

I know my family and friends have been worried about me. It is hard when they are so far away and they call me when I am in agony or what’s worse when I am on drugs that make me talk like Kermit the Frog on drugs. It can be excruciating to watch your loved one go through pain. I know because my Mom has chronic pain. She is strong and hides it better than I do, but she is in some form of pain most of the time.

Going through the endometriosis and adenomyosis has helped me to understand how it feels to be her. Even if you are surrounded by tons of people it can be lonely, because no matter how much you explain it…no one will know what it feels like to be you.  Also, they may not always believe you are in pain or to the extent you are and that is isolating and insulting. The cool thing is most people will believe you and those people might ask what they can do, and I have some suggestions that I might have wished for if I knew how much it helped. Now I know how to help my Mom because someone helped me.

My husband has been so awesome.  Being in pain, you would think, would make me want to be rubbed or massaged, but it hasn’t. I just want to be held. I just want two arms around me, and his strength and presence. I don’t know if that what everyone wants, but that is what I want from my husband. He holds me and I remember he is there and I am not alone.

Also when I neglect something because I have been curled up like a rolli polli all day, husband doesn’t even skip a beat, he says, “Of course you didn’t do the dishes/laundry/inane chore because someone was stabbing you in the ovaries.” Small tip here for those husbands and wives who think it’s understood. It’s not. Say the words.  We feel guilty, and shitty, and useless because of the pain. When you say the words, “Of course I didn’t expect that,” it helps and relieves so much. Absolution is a powerful thing.

He also helps me have things to look forward to. He makes plans for the future with me, like dates and vacations.

Distraction from the pain is essential. My husband entertains me with reading material, music, and my favorite action movies.

Friends and family also distract me. When I start moaning and groaning about my horrible life. It is wonderful when they listen, acknowledge how shitty the pain is, and then distract me by asking me about something else in my life. If then they transition to a funny story about themselves or even distract me by letting me help them with a problem that is awesome. It really helps to stop marinating in my problems and usually that is the only thing that kicks me out of my grief – hearing someone I love’s problems. I love my friends because this is what they do. They show me I can handle it. While it might not be dancing to AC/DC, I usually leave the phone call giggling and feeling blessed and that is what I need more than anything: hope. I hope for the good days. I hope for friendship. I hope for more laughter and dancing.

“Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today.”
– Thich Nhat Hanh

For those of you who also have chronic pain what helps you? How do your friends and family help? What do you wish they’d do?

What to do about Sneaky Negativity

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I turned this…

I am going through a renaissance of sorts, a life change, and it is exciting. The passion of my life is writing. I have written poems and stories ever since I could. I am so happy that I get this opportunity to write with abandon but have had so many stumbling blocks it has been a little disheartening.  Before this I could only write before or after work, between any personal engagements and while other people have done written a successful novel on the side I have not. Now I have a chance to go full on into my writing. I have the freedom to write most of the day, it is the exhilarating idea I have been dreaming about for years. When I first start things there is so much doubt, and sometimes it can come from external sources which doesn’t help. Quitting smoking, losing weight, and changing careers are all difficult endeavors and I have or am embarking on all of them.

I have uncertainty that I can accomplish my goals. I am sure I am not the only one. I ask myself is this a case that I am just scared or am I really not cut out for “working from home.” I guess this comes down to the fact that I really don’t know exactly what I want to do with my life and at almost forty it seems like a desperate and horrible position to be in. The uncertainty is damaging, but what is worse is the pressure. I want to write and be healthy now that I have the time to do anything I want. What if I fail? All this time I have been humbugging the fact that I didn’t have the opportunity to write full time. What if now that I have the opportunity and the time to do what I have dreamed of, I don’t succeed, which would be shameful, right?

Could fear hold me back? Certainly.

It doesn’t help that many of my friends and family don’t believe this move is right for me. People that know my heart and soul don’t think leaving a full time job is for me. When I think about change as a concept I believe it makes everyone uncomfortable. The concept of security is definitely safer. As a woman the idea of being financially reliant on my husband of eleven years even makes me uncomfortable and my husband is amazing, reliable, and the most trustworthy person I know. Everything in my being and how I was raised tells me I am supposed to be self reliant. Not only that, but I have never been good at the domestic stuff either. I sucked at quitting smoking, until I quit smoking. The thing is, when you try to quit thirty times, your family and friends both know you are going to fail on the thirty first and are kind of sick of you talking about it. They don’t understand that this new resolve is going to be the ticket. I remember once I told someone I loved I was going to quit smoking and they rolled their eyes. I don’t blame them. I mean it is hard to believe after the umpteenth time.

My total lack of domestic abilities my entire life is why some of my best friends and close family don’t think this is going to work, but seriously what is a little laundry when I have the chance to write the rest of the day. I know I will never be Martha Stewart. Although I do love making my house look beautiful, and what my friends and family don’t know is I daydreamed about having time to cook delicious elegant meals.

Sometimes I think I need a fresh perspective, with friends who don’t know that I have been domestically incompetent, less than graceful, and physically fitness challenged. (The last one you could probably tell by looking at me, but that doesn’t matter.) New friendships are usually pretty hopeful and there is a bonus if self improvement is the focus of the friendship.

My other friends and family, the ones who know me really well, and know I am not very good at the domestic duties; I will be gently reminding them that I can change and grow. Sometimes they don’t realize they are being discouraging, and sometimes I don’t know they are doing it. It could be a joke or a suggestion for a job I don’t want. When I realize the words have affected me later, it’s usually when my own doubts are plaguing my mind. So I have to remind myself and my loved ones: I may have been clumsy in the past but I get better sleep now and haven’t fallen in years. I may have smoked in the past but I haven’t had a cigarette in a year. I am fat now but I will lose the weight. I stink at laundry but some day I may come to love taking care of my home, and I have the tenacity. I have not always accomplished things quickly, but I roll the large stones uphill. I can do it; it will just take time and energy.

...into this.
…into this. I can do plenty!!!!