Hashimoto's disease is a condition in which your immune system attacks your thyroid, a small gland at the base of your neck below your Adam's apple. The thyroid gland is part of your endocrine system, which produces hormones that coordinate many of your body's activities. What makes it incredibly hard to give it my best shot is that because the thyroid gland is essential to producing so many other hormones that regulate my body functions and moods, when I am having a flare up, it can feel as if I'm completely losing control of my mind and body. Dealing with this disease is the hardest thing I have ever done. Harder than a 34 hour natural labor. Harder than saying good-bye to friends and family who pass on. Harder than running to the top of a steep hill 10 times fast with no break. You get the point. It's difficult. Honestly, I don't want to do it anymore. I know it is an endless battle. Imagine having all the symptoms of a major mental illness such as manic depression, paranoid schizophrenia, psychotic depression, or even a bipolar disorder. One day you wake up with overflowing physical energy, even feeling severely anxious, with a rapid heartbeat, profuse sweating, trembling hands, and diarrhea, and you can’t stop losing weight. Then soon enough, without warning, your energy plummets. You feel like a slug, are constipated, your hair starts falling out, you gain weight no matter how little you eat, and you are severely depressed. You may have difficulty swallowing, sound hoarse, and feel like you have swallowed something that wont go down. And then, suddenly, your old symptoms return, and you feel anxious, sweaty, trembling, and panicky. This cycle can repeat itself again and again. The thing is, I have to fight. I have things to do. This disease is something that I've been given, it is part of who I am, and who I will become. It doesn't have to be all bad. Sure, I just outed myself as someone who might display signs of mental illness. Is that the smartest thing in the world? I'm not ashamed. Many of us live with illnesses, mental or otherwise, that to folks we encounter everyday are invisible. We seem fine. We are hard workers. We get things done. We are driven. We seem in touch. The fact is, that we may be all of these things because everyday is a new struggle and we know that if we don't do it, we won't. There's no in between.
I don't think any of us who share about a chronic invisible illness are expecting condolences or accolades. It doesn't mean we are heroes for going on with life. It doesn't mean we need sympathy because our lives are over and we'll never see our dreams come alive. No, we share because we inspire one another to reach just a little higher. We help each other gather the information we need to take charge of our health. And, we want everyone to know that if we can do it, so can you. All we have is now. If we can make changes that will help us live our lives more fully and experience our bodies in a greater sense of freedom, why wait? No matter how challenging it is to change, why wait? Now, is the time when we can work. One step at a time. This week I have driven my friends batty with my looping thoughts and stress. I left my beloved yoga mat at the front desk of the recreation center right within my eyesight. I forgot to grab my phone on a day when it was really important that I stay connected. Yesterday, I went about the day without taking my supplements, my heart medication, or my anxiety medication. I didn't realize it until I was overtaken by heart palpitations and feelings like I was surrounded by a strange glass box. When I'm having a flare up of the disease, it is like all my thoughts are in a fog. I get stuck on a topic with worry and I cannot shake it. It's as if I'm in a never-ending state of multitasking. This doesn't even begin to address the physical symptoms. It all can be embarrassing sometimes. I will never use Hashimoto's as an excuse for my behavior or my physical issues. Yes, sometimes I may choose to share with someone that Hashimoto's is why I do certain things, or sometimes don't seem myself. It's not an excuse though. It's a reason. It's a reason to take better care of myself. It's a reason to deepen my spiritual connection. A reason to listen more to my body. A reason to be okay with a little comfortable discomfort in order to grow as a person and in strength. This is my body. It belongs to me. There's no disease stronger than me. The disease is just another teacher among many. The man golfing above is my Papaw Hansel. He passed away earlier this year of bone cancer. My Uncle James is holding him up so he can take a swing and not fall. This is the blood from which I come. We don't lay in the bed until we have to. We grab the bull by the horns as they say. My last moment with my Papaw was my dad and I lifting him to adjust him in his bed. He looked at me with those sly eyes and looked at my dad. Dad said, "She's a brute ain't she, Papaw?" He smiled. He was proud of the strength in me. I have always been one to want to please my elders. Giving up isn't an option.
Yet, on days like today, when the sun is shining and the trees are calling, I just want to rest. I want someone to hold me, tell me its okay, tell me I'm doing a good job, I'm a good person, and I can rest. I want to breathe and feel. I want to cry and laugh. I want to be with those who accept me as I am and like me that way. Today, I'm again alone. Today, I'm going to my yoga mat with Warrior Workout and see what I can become for it's all I know to do.
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In the last few years, I've noticed that there appears to be a "gratitude movement". At least, social media, television, podcasts, and blogs would have us believe it. With Thanksgiving coming up, I'm sure we'll all see the 30 Days of Thanksgiving posts on Facebook and Twitter. In the past, I couldn't help but feel somewhat cynical at the thought of people asking me to stop focusing on what is wrong and the problems of life and instead dwell on the things I can be grateful for. I resented it because it felt as if they were saying because I was upset, sad, angry, or really wanting to fix things that I was in my essence an ungrateful person or a whiner. Of course I was grateful, I have three beautiful daughters, a long lasting relationship with my partner, family and friends who love me, food on the table, and a roof over my head! Why were people insinuating that negative aspects of our lives should not be given as much attention as the things for which we are grateful? To me, being grateful was a given. If you weren't grateful for something, you had a big problem for we all are blessed. It was the problems that needed my attention. Being publicly thankful felt like bragging. I don't like to brag. It's been over the last two weeks that something inside of my being has shifted and I understand what it means now to live in gratitude. I've been a fighter all my life. I've always had a crusade, a cause, a depression, or something to overcome. In always approaching my life with the fighter in me, I had grown accustomed to feeling the cloud of gloom behind everything. I couldn't rest. I couldn't experience myself for trying to fix myself, my situation, or some injustice befallen someone/s I care for. I carried the world on my shoulders and I could never be enough. I grew tired. Lonesome. Invisible. Eventually, my fight began to fizzle and I wanted the darkness to win so I could just stop. I didn't have the faith to think I'd ever have a victory. There would be always something else to fight and my principles wouldn't let me give up. We every one have and will have hard battles in this life. Somehow, we have to become aware of our own strength and how to utilize the love we have available to us during times of trial. It refines us. It heightens our sensitivities and brings forward the areas in ourselves and our lives that need attention. However, we don't have to let the battles define us. That is what I had done. In becoming the embodiment of the battle, my "self" was caged away. I had become a thyroid problem. A migraine. The lonely wife. The scary and sad birth story. The warrior victim. The thing that just won't die for all the pain it's in.
A month ago, I went completely grain free (all gluten free, of course). I gave up nuts and most cheese. I cut way back on all other dairy. I went soy free. I, also, gave up chocolate! It's recommended for anyone suffering from an autoimmune disorder to try eliminating common food allergens and foods that can cause digestive upset. For the first week and a few days, I felt like CRAP. I was angry and sure it wasn't going to work. I have a rock gut. It wasn't food that was causing my issues to worsen. I think I was wrong. While I haven't gone completely toward the autoimmune protocol paleo approach to nutrition, I have noticed a tremendous difference with these small adjustments. I'm still waking and going to sleep very tired. At this point, you'll have to pry coffee out of my cold dead fingers. But... I'm not having huge emotional ups and downs. I'm not having any pain or headaches. My face hasn't swollen in a month. I'm still having some digestive issues, but I have a plan for that. Keeping up with a hectic schedule doesn't stress me out nearly as much as it did before. I have heart palpitations regularly, but they don't seem to be brought on by stress or anxiety anymore. Truly, the difference in my ability to cope emotionally has increased 100x. About three days in, I was about to call it and go back to my normal whole foods diet which included all food groups aside from processed foods and refined sugar. A friend encouraged me to stick with it. I had been complaining of the lack of food options, meaning my favorite foods. He said, "You won't know unless you try." Curious me, I have to know, and I have to be able to say I tried. It was a challenge and I took it. Here I am. It's like I've emerged from a fog. As cliche as that picture is, it is true. Now, my heart is filled with gratitude for things I didn't even notice before. It hasn't been a effort on my part. It is like it has happened along with this emergence. At the same time, so many things are falling into place. My spirit is being freed from the fighting and allowed to be and do with all the strength it once used to fight endless battles. My dreams are revived to be chased and earned. I'm realizing that I will be okay in whatever path my life takes as long as I am remaining compassionate, open, available, aware and caring of my body, and embracive of my truth by actively knowing and living it. This week gratitude has taken the form of finding tremendous joy in being welcomed into a new yoga community through Evolation Yoga Kentucky in Pikeville where I am teaching yoga. Enjoying a 7 day a week yoga practice and having the ability to practice/teach up to 3 hours of yoga on 4 of those days. Hearing the new expressive vocabulary my three year old, Gwen, is adopting. She's so full of spunk. The 100% my oldest daughter got on her math test. Seeing the excitement that she and my middle daughter have when going and coming from their school every day. I'm finding myself growing more and more thankful for the time several of my friends take in their day to send me little messages to laugh at, poke fun at one another, or to share burdens and triumphs. I'm wonderfully thankful for my husband being willing to coordinate his schedule with mine and the childcare my friend has been willing to share with me, so that I can take a few hours every day to follow my bliss as an adult woman. I could go on. It's easy to be grateful when you are feeling good. It's easy to notice the joy filled moments when you aren't managing with pain or feeling muddled. Right now though, I feel like I'm breathing in gratitude. The scary part is that a little voice in my head tells me it all could be a fluke and the next debilitating headache is around the corner, the next big crisis is imminent, loneliness will overwhelm again, or another tragedy will be brought upon a friend or family member. There are some who I know would tell me to ignore that voice, or to actively direct my thoughts to the good. However, I know good and well that it is more than very probable that any or all of those things are true. What I think I've learned with this go around is that I don't have to go into the ring punching and kicking with all I have. I simply have to have my gloves on, my guard up, and be there. Present. Alert. Knowing where my heart lies, what I am capable of, and that winning or losing is nothing compared to the process and the time we take to be there in it.
At this point, I am angry. I want to feel like a 36 year old who exercises seven days a week, eats a clean, whole foods diet, eats no refined sugar, doesn't smoke or abuse substances, and generally tries to keep a good attitude. Why? That's who I am, but sometimes I wake up and feel like I don't want to wake up anymore. The pain from headaches, procedures on my foot that won't heal, a bum shoulder, a stomach that doesn't want to digest food, is wearing me out. Not to mention, I was told Monday that my insurance won't cover the procedure that would help my foot heal quickly. Nope, I have to a make three hours one way trip to the doctor every month and renewed pain with the treatment I receive until this is healed. Emotionally, while I try to hide it as best I can, I'm up and down. Anxiety and depression takes its toll as well. It's hard to admit you have either of those conditions when to the outside world you appear to be functioning fine. Some days, all I want is to be held by strong arms, smell damp earth, and feel the wind against my face. All day. I'm coping well though. Better than I was, and yoga is the reason. Fatigue is another big obstacle, but at the moment, I'm caffeinating strongly and taking iron to overcome my anemia as my body isn't absorbing nutrients from my food as it should.
I'm seeing three specialists (neurology, dermatology, and orthopedics) with 1-3 months between visits. I see my primary care physician at least once every 3 months for bloodwork, further testing based on prior test results, and medication updates. I have also started seeing my chiropractor regularly in hopes to spread out the visits to the orthopedic doctor. Honestly, it feels really stupid. Stupid. How did I end up here? Genetics is the simple answer. When I asked the girls pediatrician at their recent well visit if there was any way I could keep them from ending up here as well, she said, "Not really. The best we can do is watch for symptoms and catch it early." Hover the cursor over photos for descriptions.
Because western medicine sees no cure for Hashimoto's and other autoimmune thyroid conditions, the approach is typically to manage a patient's symptoms as best as they can. For many patients, the management is not enough to allow them to live the life of a normal healthy individual. Unfortunately, as in other areas of medical breakthrough and dissemination of knowledge, most primary care physicians are not up to date on the latest information surrounding autoimmune diseases of the thyroid and a very many are not even aware of how to properly test for or diagnose them. Unless they specialize, doctors receive a basic understanding in medical school and not many take up further study in this area. Many people spend years with their disease worsening before they can even get a diagnosis. All the while, they are accused of being a hypochondriac or diagnosed with an array of issues that are not separate at all, but are related to the decline of their thyroid function. It is extremely frustrating for the patients and those close to them who know something more is wrong.
I didn't want to be in this place again. I am now overwhelmed while being in a familiar area. It reminds me of all the researching, writing, advocacy, and healthcare searching I did when trying to uncover why I had experienced unnecessary cesarean surgery and how I could go on to have a vaginal birth after cesarean. So, much of the information women need to make good decisions in pregnancy and birth is not transparent or shared among care providers and the women they serve. I had to become more involved in determining the kind of treatments and healthcare I would receive than those who were providing me that care. I had to take it upon myself to research, learn the science, and take the steps that I could to heal my body. All the while, I was sharing my journey with other mothers and becoming an advocate for the health of women and babies. When I stepped away from the career side of this advocacy, I thought that my focus would no longer have to be split between my passions and my healing. Yet, here I am again. Same thing, another issue. I'm tired.
Eventually, as I am choosing to do this one step at a time, I will be giving up many of my favorite foods and all things that I currently consider a treat - chocolate, dairy, all grain, corn, coffee, tomatoes and nightshades, nuts/seeds, soy, possibly eggs, all preservatives, and alcohol (which I have always had an aversion to). Eating out will be very difficult as will eating when friends and family cook meals. I have to be strict about the changes or it won't work. After 3 months to 2 years, depending on how my body responds, I will be able to reintroduce foods to see if I react poorly. If I don't react, I can continue to eat them if properly prepared for optimal nutritional absorption.
Another piece to this puzzle is medication and supplements. This is part of why I HAVE to adopt the diet and lifestyle pieces. I don't want to grow this mix. I want to reduce it. I will probably write more about that as I know what is helping me and what isn't. I really want to share this journey because Hashimoto's affects about 14 million Americans (along with the other health issues it causes) and no one seems to be having open discussions about it. It's another one of these dark areas where information is clouded and you can feel crazy and very alone.
I also have to make sure that I sleep at least seven hours a night, preferably 8-10+. It is recommended that Hashimoto's patients sleep until they naturally wake up and sleep until 8 or 9am as regularly as they can. This will be hard for me as I get a second wind in the night or I sleep restlessly, having wild dreams. My daughters get up at the first hint of daylight. The bodies of Hashimoto's patients need time to rebuild and to rest from the overburden.
Light exercise is also a must. It isn't recommended that we go for very intense exercise as that will cause further stress to our already taxed adrenals. I'm grateful I already have that under control with my yoga practice. I, now, practice 7 days a week and my favorite teachers have DVDs geared toward my health and fitness goals. Below are a few I'm using. I'm so thankful for my yoga!
The biggest thing I'm dealing with right now is needing to vent and not feeling like anyone wants to listen. I don't want to whine or seem as if I am whining. I'm a very proactive person and I'm not asking for pity or help. I want to be frustrated and have someone hear it, tell me I'm strong, tell me I'm a beautiful person, or simply feed me some positive about myself. Encouragement. I want pep talks. Or maybe I want my basketball coach back. The one that would make me mad in order to have me be fired up to play my hardest. Right now, I'm so worn out I don't want to fight. I just want to move on, whatever that means. It seems though that those with Hashimoto's have a hard time finding support and will often lose the support of friends and family. So, I'm going to blog for that reason too. Maybe I won't overburden those I love if I can let some of it out here.
In the meantime, I'm going to relentlessly pursue my dreams. I'm applying for jobs, seeing the girls into their new school, teaching yoga, cooking good food, and reading and writing a lot. Hopefully, spending times with friends and family will be added in there. I'm going to do my best, because I can. That's the anger, overwhelm, and the plan.
By the time July 2014 rolled around, I was finding that I could no longer keep up with the form of workouts I had chosen. I was doing CrossFit inspired and HIIT home workouts. I was really worried because no matter my physical size, I had always been athletic and capable of pushing myself to keep up with strenuous exercise. Not only this, but the migraine headaches that I had been having since age 13 had picked up in frequency and were becoming debilitating. I reluctantly went to my family doctor. That began a cascade of testing and seeing specialists. I have seen a neurologist (and will regularly, indefinitely), orthopedic specialist, gastroenterologist, ob/gyn, chiropractor, and a dermatologist. I've had bloodwork every 3 months, MRIs, CTs, x-rays, and cultures of various sorts. Then, the ER visits. I had to begin taking medications that would significantly lower my heart-rate in order to help prevent the headaches that were interfering with day to day life. This meant that it was now physically impossible for me to keep up with the intense workouts. That is when I took back up with a daily yoga practice. I now practice Kundalini and Vinyasa yoga at least 6 days a week. I eat real food as well as I can manage, and I try to feed my family the same way. See, I wasn't giving up. I have three daughters to raise and provide an example for. If I gave up on myself, what would I be teaching them?
All that said, leads me to why I'm really writing this post today. This region of Kentucky is known as one of the sickest regions in the nation. Kentucky is one of the sickest states in America, a place where too many people die too soon, and many who live endure decades of illness and pain. I must say, that what I'm seeing in my neck of the woods, currently, around health and fitness, gives me a great hope for our future. As I research and find the resources I need to receive the healthcare and access the food that I need to live the best quality of life possible for me, I am finding other eastern Kentuckians doing the same. Not only are they taking charge of their health, but they are becoming the change that they want to see in the region. People I went to school with who are in the medical field are offering free, daily health tips via Facebook and coming back to the region to serve their communities. When I make posts about health and fitness information, I get messages and replies asking for more information or making comments that offer me more information. Area residents seem more interested in local food options. Farmer's Markets are sprouting up all over, and people are learning more about wildcrafting. Yet, the thing that inspires me the most is what I'm seeing as an increased willingness of people to use and explore the capabilities of their own bodies in outside of the box ways. I have recently started teaching yoga in Hindman and Whitesburg and have been so pleased to have no fewer than two and as many as eleven in my classes! So many express interest and a desire to learn how to take responsibility for their health. This makes me hopeful for the health of our young people.
Nick is part owner (along with Stacie Beckett and Carrie Adkins) of the new CrossFit Experior in Williamson, and Cristin instructs and works from the box (gym). I asked Nick why he wanted to make this passion of his into a career, and his answer is so much a part of the solution I envision for the positive growth of our region. I wanted to open a gym to make a difference in the community, to help people change for the better. I think people are more interested in a healthier lifestyle these days for many reasons, like a better quality of life, to be more physically capable, longevity of life, or maybe to prevent a future health crisis. People as a whole are learning and adapting. 80 years ago everybody smoked. It was the norm. We're at a time now where healthcare and technology make things well known. We know now smoking has many adverse health problems, eating fast food, and drinking soda everyday has adverse health reactions. - Nick Potter Simply put. He wants to make a difference in his community. Nick and Cristin saw an issue that affected them personally and in their desire to change it for themselves, they are a part of changing it for the community at large. We live in an area that is so naturally beautiful. I see it as very possible that this region can be known for health and well-being in our future. That's part of my vision as I share yoga with those who come to my classes. I know Nick and Cristin are seeing it on a daily basis as they inspire people of all ages to good health. Jane Austen wrote in Persuasion, "I am half agony, half hope." On the days when my body and emotions feel agony, I look to hope. I'm going to fight the good fight. Others are fighting the good fight. This is just one part of the puzzle that will be rebuilding eastern Kentucky, but it is this type of revolution that makes me not give up completely. It is a clear path to goodness.
This is the current situation in the hen house. Sitting hens and their guard sister. Women folk getting about the business of doing what they do. They depend on me. These two girls do too. They wait for me morning and evening for their attention and food. I'm pretty sure that my efforts saved this girl's life. She requires feedings, walks, grooming, and attention. And... there's these three. Building pirate ship bunk bed forts in the morning after plates of DQ gravy and biscuits, power outages, changed diapers, band aids, smiles, and tears. These pictures were all taken today. This is my day. Most every day. A constant giving of life needs and comforts that make living happily for these people and friends possible. It's the hardest work I've ever known and yet it is the most important. Sometimes I get in such a routine of day in and day out, I forget that my heart and mind are demanding more of me. They are demanding I feel this life and live it with all I have. That I, who is constantly apologizing, live it unapologetically. It isn't any coincidence that the more you learn about yourself and the reality of life, the more life can ache. Falling back on the routine, and going about it as you always have, can be a way to numb that ache. Get your slop boots on. Shoulder 50 pound feed bags across the yard and pour two in the big barrel drum. Get them fed and some good yard greens in their run. Watering takes 3 gallon jugs filled by squatting over the creek - hands in cool water and minnows with their babies grazing your fingers. Try to look not melancholic, or full of thoughts, or tired, but never can quite pull it off. Wondering if I will always be that girl who feels, thinks, and worries about her impact on others just a little too much. Hoping one day the fire in my heart will gleam in my eyes. A moment down the path to my special place. It kind of hurts to breathe. To be alone. To feel alone. A reward from the kind Mother after a walk with my daughters and our dog through the fields. You are ok. You are supported. Remind yourself. She says. Check on the garden. The grass desperately needs mowed.
Yoga and breath. Yoga and release. Then, it comes. The fire in my heart chakra and solar plexus. It burns uncomfortably hot. It has a wash of tears behind it, like a flood that wants to drench the flame, but the flame says absolutely NOT! I'm here. I'm... here. I'm HERE! That's the moment that you realize the routine is a cloud. It can completely blur the feeling that comes from wanting to know what all is possible for me. What all I can really offer others who want to be there with me. What example I can be for the women I am raising. Being in the cloud deadens the ache, the burning, the churning stomach. The release is when I know there is so much more to be done. So far to go. It's the moment I want someone with heavy arms to hold me so I can just be and feel, and figure this all out. I'm ready to grow. The energy is there. So much energy. It really is the hardest feeling I have ever had to feel. Deep fears of my entire life made into a truth holding the answer to who I really am. And, I lay in savasana trying not to think my way out of feeling it. Knowing it is there and meaningful, and longing to share itself.
It's 11pm on a Thursday and my little gals are sleeping. My head is so full of things I want to write about. I write for weeks in my head sometimes before I get a chance to put it down somewhere. It's hard, at times, to retrieve the right words as my multitasking mind likes to store things in broad ideas. The house is quiet and while watching sappy, chick TV, I realized I had to get this down before I forget. I cannot forget this. I CANNOT forget this. I'm putting it here. My journal is public. My heart laid bare.
Many months ago a friend and mentor suggested I explore the spiritual principle of Joy. What is joy? Have I ever felt it? If so, when? What brings me joy? I thought on it for awhile and I gave up. It is hard to know if you've experienced something you can't define. The closest I got was when my girls were born. Yet, it wasn't quite what I would call joy. It was blissful satisfaction. It was sacred beyond words. Joy seems too simple a word for those complex moments post birth. I gave up thinking about it. Then, I began doing a yoga DVD from my favorite teachers, Ana Brett and Ravi Singh.
I've been having pain in my arms, neck, and shoulders. This just so happens to be where the heart chakra is located. Mushy love stuff always has been kind of cheesy for me. Not much into Kum Ba Yah or hippie dippy make love all around the world. I am too cynical for it. I've felt too much. Hurt too much. It just doesn't seem realistic. Except, as much as I'd hate to admit, there's part of me that wants to believe it. A part that wants the possibility.
So, to address the physical pain, I began doing the yoga once a week to address the heart center. Green Energy is a part of a weekly rotation of 6 practices/DVDs that I have set out for myself. Green Energy comes on Thursdays. Each time I do it, my heart center opens a little more. I can feel it being physically freed. As woo-hoo as it may sound to some, I've also experienced spiritual and emotional release as a part of this practice. I've come to understand in a deeper way some of the things that hurt me so as a child and as an adult. I've come to understand what I thought I could never. Then, this Thursday, I felt something strange during my practice. A realization came to me as clear as the full moon in the dark of night. My happiness doesn't depend upon anyone else nor does my happiness depend upon another's being happy. It doesn't depend upon the value someone places upon me in their life. Happiness is boundlessness. It is freedom. It is self worth. It is the space you give yourself to love others within the boundaries of loving yourself. I am born free. I am born boundless. It is by choice if I feel tied down. To listen, know, and follow my own heart is the key to giving myself the space to find joy. Where my path crosses another's there will be effect. However, the effect is the responsibility of the one whose path I cross if I am going forth in love and truth. We share each other in moments. Some moments so brief can impact a lifetime so profoundly. It is when we act from our truth, that our presence can lead another to their own. Happiness doesn't come from responsibility and obligation. Responsibility and obligation can be chosen to inform happiness. I told a friend the other night that I have always been a results oriented person. The student, the pleaser, has always wanted to hear that I'm all right. I've needed that reassurance my whole life - the kudos, the reward, the A+, the feeling of being wanted. My happiness has hinged on what I could do for others to make them ask for my presence. My happiness has been determined by my feeling of security in bonds among people. That kind of happiness isn't real. It is lonely. It is fleeting. It is panicking. It is finite. I'm still not sure what joy feels like, but I think I will know when I feel it. I think I owe it to myself and everyone in my life to be free enough to be happy. To acknowledge my truth, set my own goals, and work in love toward them. I just had to get it down before I forget. I'm going to have to live with this. There is no immediate fix, no sure cure, and no answer as to if this will ever go away except likely not. I didn't want to imagine the rest of my life dealing daily with pain. I didn't want to have to take another medication. I wanted to hear that with a snip, clip, or treatment, I'd be rid of this thing and I'd never have to feel pain so intense that I want to leave my body again. It isn't going to be so. I spent yesterday wondering how in the world I was going to find the support I need to muster up the motivation to do the work I need to do to not just live with chronic migraine and nerve damage, but to live well. Seeing my grandparents in their transitioning to the next stage of existence, I've done a lot of thinking about quality of life. Quality of life matters a great deal to me. The thing is, I've been fighting for something my whole life. I've been fighting to be acknowledged, respected, and for my basic human rights since I was a child. If I wasn't fighting for myself and protecting myself, then I was doing it for someone else who deserved fighting for. I'm tired of fighting. I'm tired. I'm ready to be carried some. Life is to be enjoyed as much as it is to struggle through. Not too long ago, I talked with a life long Christian who had begun to wonder if there really would be something after death and if it would be kind. I told her that if she really believed what she professed to believe, then death is just a step into the future and not to be feared. Sure, there's anxiety anytime we are dealing with unknowns, but to really fear death can cause unnecessary pain. There is something for all of us to believe about death that can pacify fear whether or not we are faithful to a religion. If I take my own advice, and I truly believe what I believe about life, purpose, and God, then I know this added chronic condition is an opportunity for growth, understanding, and personal freedom. I, the introvert, would like a team for this though. Me, who has always preferred to work alone wants a team. I've supported women in labor; speaking gently, massaging, seeing to their comfort as they came into their own as a mother. They transformed before my eyes and came into a realization that you cannot come to except for in the act of birth as I spoke to their strength. I would like a doula - a cheering squad - a friend. To step back into my name and do this thing, I need to be able to have rest and reward. I'm already putting forth a lot of effort to make my body temple serve me well. The most important thing for me to do right now is reduce stress and find more effective ways of coping with the stress I will inevitably experience. As everything is an opportunity, dealing with stress has the potential to change my worldview and bring balance to my life. Stress doesn't have to be the bad guy that brings only pain. But, to experience stress in the positive, I am stepping outside of my comfort zone and asking for encouragement from others. I'm baring my heart, reaching out, and accepting that sometimes a kind word from another, a motivating quote, an ancient verse is the strength you need to breathe the next breath and be glad for it. At this very moment, I'm fighting the urge to not erase this whole thing and think of it as whining. I'm fighting the guilt that is self imposed for not being the friend I might have needed to be for someone else. The ego is stepping in and attempting to make me feel unworthy of feeling the love of others. Maybe this whole thing is God's way of helping me learn to really accept that we are the embodiment of God's love and accept that this love doesn't always have to originate in my own heart. This may be when I finally am able to let down my guard while still being that warrior and defender I have always had to be. Who knows what this is? I only know that for the sake of my children and husband, I cannot let this get the better of me. I've been laying in bed for hours every night before falling asleep. Not completely unusual except for what is keeping me awake is not my racing mind. It's so loud my mind cannot do any thinking beyond what could be making this overwhelming noise. Swoosh, swoosh, swoosh, gurgle, pop, swoosh, swoosh, to the beat of my heart. It's the sound in my right ear. It is there all the time since September. Sometimes it is so loud I have a hard time hearing people when they talk. Other times it is subtle and barely noticeable. The best times are when there is background noise. At night, the sound is all that there is.
I Googled it. It's potentially a lot of things, some of them major things. Coupled with my terrible migraines it makes me a little wary of it not being looked into quickly. I went to my family doctor as an ER follow-up for migraine and stomach cramps a few weeks ago and mentioned it to him. He looked in there and listened to my carotid. Nothing is clogging my ear. My carotid sounded fine with the stethoscope. He recommended I try to get my neurology appointment moved up. It is scheduled for January. The appointment was made in October. I call. I tell the receptionist why I'd like to get in sooner. She explains that I'll have to go through the ER at the hospital and the ER doctor will do a consult with the neurologist. That will be the only way I could be seen by him any sooner. Thanks and no thanks. To think we wonder why the cost of healthcare is so outrageous. Don't blame it on the docs. So, I wait. I wait and I analyze. I wonder. I wait. I wait like I've been waiting to see a dermatologist for this thing that has come up that needs examined. Again, the referral was made in October and I don't see her until December. After finding out that no dermatologist in my region of the state will accept my insurance, I had to make an appointment with a doctor in Lexington which is three hours away from home. This isn't unusual for those of us who live in the Kentucky coalfields. I feel incredibly sorry for people who have limited transportation, funds, and are dealing with a major illness. A good doctor comes into the region and it is like rolling dice as to when you might actually get an appointment. Otherwise, you are referred to the surrounding cities for care - two or more hours from home. Fred D. Baldwin writes in an article titled, "Access to Care: Overcoming the Rural Physician Shortage": "Rural residents must often travel hours to consult specialists, and many rural communities lack even primary care physicians (physicians certified in family practice, internal medicine, pediatrics, obstetrics/gynecology, and psychiatry). In fact, rural Appalachia still labors under a double burden, according to Lyle Snider, research director in the University of Kentucky Center for Rural Health's Division of Community Programs, Research, and Health Policy: the fewest primary care doctors and the most severe health problems. These situations are related: having too few doctors means that dangerous conditions go undiagnosed too long." The problem of physician shortage has gotten better as I have gotten older. I can directly see some of the strategies the state and healthcare agencies have used to recruit more doctors into the area. The most obvious one being recruiting residents of these rural counties into the field. I can think of my small graduating class and the class under me and point out at least seven of them who became a doctor, midwife, or PA-C and came home again to serve. I, too often for the small number of times I have actually used an ER, have had the experience of there being cultural and linguistic barriers to receiving proper care. It seems doctors from outside of the country and/or state were at one time given incentives to practice here. That's a good thing because without them we'd have been up the creek without a paddle. However, I very much doubt that they went through any cultural sensitivity training and I know personally from experience that there is often a language barrier as well. It hasn't been unusual to hear of disappointment in a doctor's visit or a feeling like the doctor didn't take the time to listen and understand. I know people who have left that little room having no clue what the doctor ordered. So, that said, it is wonderful to have the opportunity to see a neurologist without leaving eastern Kentucky, even if I have to wait until January. It is a step forward. However, the problem is far from being solved. A report, Rural Kentucky's Physician Shortage: Strategies for producing, recruiting, and retaining primary care providers within a medically underserved region says, "Then there is the issue of retention. One source of dissatisfaction on the part of rural physicians could be that the workload and demands placed upon them generally are greater than those experienced by their metropolitan counterparts. Those within Kentucky’s health care industry also point to decreased opportunity for professional contacts in medically underserved areas as a reason for premature physician departures from rural regions. There also are economic concerns. The federal government has become the largest contributor to graduate medical education, paying more than $7 billion annually toward that effort. Yet, federal and state governments have been criticized for failing to develop incentives that better encourage rural practice. Rural physicians typically derive a larger share of their gross practice revenue from Medicaid and Medicare patients, but these publicly supported insurance programs pay physicians at lower rates than private insurers. Rural physicians also typically have received lower Medicaid and Medicare reimbursements than their urban counterparts for performing the same medical procedures." Well, what do we do? I couldn't imagine serving in the healthcare field here. Being a patient within it can be stressful enough. And, is just another way that living rurally is vastly different from metropolitan living. So, I wait, albeit not very patiently, to figure out what this potentially big deal thing is going on in my head. I pretend like it is no thing at all until I lie down at night and it begs for my attention. I've had chronic migraines since I was thirteen years old. The only times I haven't had consistent headaches were during pregnancy. Since giving birth the third time, my headaches have become so bad and often that there have been days when I felt that not being conscious would be better than experiencing another second of pain. I've been brought to my knees by these suckers screaming, "God! Help me!" I'm in the process of getting medical help for my headaches and have been to a few different doctors in connection to them. I've only treated them with medication one other time while I was in college. At this point, if I cannot rely on medication or some other remedy (I've tried many) to make them less frequent and more tolerable (dare I hope for them to be eliminated), I will be devastated. The migraines exacerbate some other health and emotional issues that I have and it has created a feeling of being broken.
I turned 36 last month, and I have been confronted with the fact that I'm "older" on many occasions, including trips to the doctor. I've never considered myself "older". The word "old" doesn't even register to me until 70 - maybe. I don't mind the passing of years, and I am so happy to be an adult. You couldn't pay me to be a kid again. Yet, I'm frustrated that at a time in my life when things are comfortable and I am secure in so many areas, that I feel so physically and in turn emotionally down. Once I get over the fact that a situation has occurred, I am generally very proactive about changing or improving it if it doesn't suit me. I've been doing so much to create health and well being in my life. I eat a diet of whole and properly prepared foods per the recommendations of the Weston A. Price Foundation. I have a daily yoga and meditation practice. I take walks. I'm at a very healthy weight. I'm physically strong. I strive to stay spiritually connected. I don't jump to easy fixes when lifestyle adjustments would produce healing derived from within my own body. In fact, I'm a little obsessive about healthful living. I work hard at it. Because of my effort, I am often embarrassed or incredibly sad on the days when I feel so sluggish, depressed, or when a migraine has been triggered and I lose a whole day of productivity or forbid I need someone to help me get through the day. I get angry when the pre-headache feelings create within me a mood of less patience and irritability. Having a chronic issue like this isn't something I have invited to stay, or something I want to allow me exceptions to living a full life. I want it GONE. Now! I'm a homeschooling mother of three under age 10. I'm a wife. I'm a writer and spiritual counselor. I'm busy, and striving to be at my best - the way Creator intended me to be. At age 33, which I referred to as my Jesus year, I gave birth for the third time in an experience that was incredibly profound and blessed. Jesus was the man in the red cape that year. A constant reminder that I am loved, supported, and that my highest good was being written as much as I wanted to seek it out. If age 33 was my Jesus year, then almost three years later, it is time for a Resurrection. A rebirth. Creator saw Jesus through his physical torment and blessed him with Divine life. I still believe I'm loved, supported, and that my highest good is being written right at this moment. I believe in purpose - Divine purpose - and a Love that surpasses all turmoil. I know there is a plan for this. A reason. I'm tired though. Really tired. And on the days when it feels as if my brain is pressing against my skull with a force that will explode it all into a mush and 1,000 little pieces, I have a hard time reminding myself that there is something more to this issue than pain. I don't want to be embarrassed at needing to spend the day on the couch, or worried that I'm appearing slothful or weird because I can't function normally through the pain. Pain is very misunderstood in our culture. I am also finished with trying to muscle through or pretend the pain isn't there in order to not be a Debbie downer. I have important work to do. I'm not a pill popper and I refuse to go that direction in terms of medication as a band-aid. Where do I find the willpower to keep at this until I find the answers and life in there? I don't know where this path leads. I think of everything in life in a journey metaphor. A walk through the woods. I don't know where this path leads, but I'm going to chronicle the steps. I'm going to be resurrected and able to feel bliss again. |
AuthorKelli Hansel Haywood is the mother of three daughters living in the mountains of southeastern Kentucky. She is a writer, weightlifter, yoga and movement instructor, chakra reader, and Reiki practitioner. Categories
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September 2021
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