Complex Mass: Re-vamping the Fight in the Face of Physical and Emotional Weakness
Today, I've decided to give up fighting. I'm on day 3 of a another migraine. I'm home alone with my girls who are getting much better from a bout of upper respiratory illness. They are giggling and horse-playing. I need to work on a radio piece for my new job, but this week has thrown so much at me, I need to clear my head first. So, I come here to write. I also took an Imitrex. The medicine hasn't been helping. I hate taking all this medicine.
A good friend's mother and a regular in my yoga classes, my chiropractor, and some folks in my online support groups for Hashimotos urged me to get my thyroid scanned. I'm on thyroid medicine and my thyroid had never been palpated nor had I had an ultrasound of the thyroid. This last year I have had a few CT scans, 3 x-rays, 2 MRIs, and countless blood tests. My main condition which I MUST have daily medicine for had never been evaluated by anything more than a thyroid panel blood test. I could write a whole other post on my frustration with this fact, but I will just say this. If you work in healthcare (medical, mental, alternative, or spiritual), listen to your patient/client. Even if you believe what they are saying is a crock, listen with all your effort. In their words, you will find the next appropriate steps regardless if their words are medically meaningful to you.
Last week, I had my first thyroid ultrasound. I had been complaining of tightness in my neck, difficulty swallowing my medicine and some food, dizziness, hearing my pulse in my right ear, and the feeling of being in an airplane taking off in my right ear as well. It's messed quite a bit with my hearing. I was prescribed allergy medicine and had an MRI for that complaint. I don't have seasonal allergies. I never have. I very rarely even get a cold. The MRI showed normal blood flow in that region. The symptoms didn't go away even when I gave the allergy medicine a chance despite feeling I didn't need it. I didn't think these symptoms were something I should have to just ignore the rest of my life. Sometimes the swooshing and pressure change in my head is impossible to ignore. Being a yoga teacher, it affects my balance and impacts my practice. It also makes it hard to talk on the phone and at times in person because I can't hear the other person. That's not normal. That's not ok.
I got a call Friday that my doctor wanted to review my ultrasound results with me in person. I went in this past Monday. These are the results. Pardon my coffee stains. I'm a little obsessive when it comes to reviewing my medical records and I had an accident.
I have multiple nodules that are small in the left side of the thyroid - "hypoechoic areas". Lo and behold, I have a complex mass of a significant size (though apparently they can also be larger) in the right side of my thyroid. The radiologist has recommended a fine needle biopsy guided by ultrasound to rule out cancer. It will also need to be assessed if my thyroid needs to be removed even if the mass is benign. If you look at the size of the mass in comparison to the size of the right side of my thyroid, you can see why it is something that needs further testing.
Many members of the population have nodules on their thyroid. Not all of these people have been diagnosed with thyroid issues. However, people with nodules measuring on the larger end and who have a history of thyroid issues, are the most likely to have a malignant nodule. Malignancies occur in few cases compared with the commonality of thyroid nodules. I'm supposed to get my appointment for the biopsy today, and at 3:16pm, I still haven't gotten the call. I'll be traveling to Lexington for the biopsy. It's a 3 hour trip.
I'm starting my first round of employment in a decade on Monday, and I am just now getting this news. For almost a year, I have been having symptoms associated with these findings. I can't begin to explain how angry I am that I am now going to have to deal with this at all. My hormone numbers were improved in my last bloodwork. I had several months of feeling better after adopting an autoimmune paleo diet and a no-holds-barred 7 days a week yoga/meditation regimen. I've added herbs and supplements, cut many of my favorite foods, and tried my best to surround myself with people and activities that feed my soul. I thought it was working. I suppose it was a little.
To me that seemed like a reasonable option. I was done with spending half of every month in pain with the headaches. I told Creator that night that I would take on anything if it helped me move passed this pain. I told Creator I'd accept cancer, brain tumor, craziness, aneurysm, all of it. I'd accept it because it would be a diagnosis and with a diagnosis I could have a plan. Whether I lived and got treatment or died, I'd have more freedom than I was currently having. After seeing the neurologist, I got some improvement in my headaches with medication, but now I have had a headache 10 of the last 20 days. Back to the headache from Hades (not that all of them aren't bad, but I literally would've downed a bottle of pills and died if I hadn't had the ER option that night). I told Creator that I'd use whatever I was given to improve my life while I am here and to try to improve the lives of as many as I can reach through my experience. I said, "Please, bring it on." A diagnosis big or small was the only way out I could see aside from death. Yes, it's a dark place to be, but it isn't a godless place.
I still don't know what I'm dealing with, but I'm closer to an answer. I don't know what road lies ahead. All I know is I am tired. This year I have lost 2 grandparents, 1 grandparent-in-law, had 2 aunts and 1 uncle diagnosed and battling cancer, 1 sister with a cancer scare, a niece with blood clotting issues in the brain, and 1 sister under immense stress and battling Graves disease. I am currently grieving another great loss that leaves me recognizing how alone I really am. Surrounded but alone. All my close friends live away from me and are busy people. None of us enjoy phone calls. My husband must work regular hours. My parents are busy working and caring for the other kids in the family. I've always preferred being a loner, but sometimes, I wish I could just sleep in someone's arms and not have to tend to anything.
breath. Strength comes from the breath and if you become a witness to your inhales and exhales and your body's reaction to the breath, you will discover relaxation and the panic mode dissipates. It is always good to concentrate on basics, and just observe the breath connection from head to toe. Just lay on the floor, stretch and breath, and be a witness. Understand you are strengthenIng inside out. We all should do this on a regular basis, but, I think we view this as no effort towards our practice, when it is the most important part. You never lose a gain...it remains with you."
I stopped and realized that all the pushing, making myself keep going, and searching for answers beyond the medical is wearing me out. I realized that I have not focused on one of the most fundamental aspects of yoga or spiritual practice - equanimity. I have not found my balance. In all the striving, I have built my willpower up so intensely that I do not know when to allow myself a break or to stop, celebrate, and live in my gains. I just plow down the next row. Start trying to fix the next biggest issue. I want so badly to be a light to myself and others that I think I have let my ego get out of control. I have overestimated the impact I can have on a life, including my own. My efforting will only go so far, if it doesn't create space for me to also take the time to live what I have learned. Sometimes, we can try to make up for the lack of self-esteem and self-worth in our lives by building other parts of the ego like self-confidence. I have been relying on my own strength and my own mind to do everything for myself and others. At this moment, I really just want to be loved and carried for awhile. I'm done fighting. I'm going to breathe instead.
I have to make a plan. I have to hone my spiritual and yoga practice. I have to re-think my self care.
"You can't fully appreciate the light until you understand the darkness." - Black Yoga Asanas Ritual Vol. 1
If you would like to read more about this particular aspect of thyroid disease, these links are where I have been doing my own research on what is to come for me.
Thyroid Nodules - Cedars-Sinai
Does the Risk of Malignancy Increase When a Thyroid Nodule is Larger than 2cm?
Risk of Thyroid Cancer Based on Ultrasound Findings
Thyroid Nodules - AAFP
Realities of Invisible Chronic Illness
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.
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.
Kelli 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.