It’s My Hair and I’ll Cry if I Want To

In March, I started writing a piece on my newfound love and respect for long hair and what it symbolizes for me. Since then, I’ve entered into a long term flare that forced me to recognize that all the little allergic reactions I was having to various things was having a much bigger impact than I wanted to admit. It was time to change my ways. Since I react to hair dye, this meant giving it up.

There are only a few ways one can choose to go gray: You can let your roots grow out and live with the bag lady look until it grows out. You can spent $500 at a salon getting your natural colors blended through your dyed hair in a mutli-dye process, returning 2-3 times more for touch ups. Or you can shave your head and start over entirely. I chose to shave my head, as I can neither afford to spend a small fortune on hair services at a salon living on disability, nor should I put myself through additional exposures. Shaving my head was not an easy decision, despite it being the only real option.

To better understand what it cost, I wanted to share what I started working on in March, but never shared. It highlights the complexity of hair in society and the personal reasons why growing my hair out was so meaningful to me. For those who read this blog regularly, you won’t be surprised to know it has something to do with overcoming an old trigger.

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Here’s what I wrote in March

I’ve been thinking a lot about my hair lately. It’s always been a complex subject for me. Hair is one of those things you may think you don’t pay any attention to, but you’d be kidding yourself. Hair is a highly political thing. The way we choose to wear our hair signals much to other people, whether we choose to believe it or not. In the African American community, this is no secret. While African American and Indigenous American hair has layers of complexity tied to history and heritage that are unique to those cultures, all hair, how we arrange and cut it, is used as a tool of style, of conformity or rebellion, of cliques and individuality, and it may signal a return to one’s roots and heritage or a desire to be modern or even radical.

As a girl, I grew my hair out and permed it regularly.  In the 1980’s, this is what we did. Only when I hit my teen years and my desire to reflect on the outside how I felt on the inside grew, I began playing with various cuts and colors, from black streaks in my blondish-brown hair to shaving it into a Mohawk to dying it radical shades of red and purple. Unlike now, dyeing your hair in rainbow colors meant something. It was a cultural and political statement. Then I met my first husband, who insisted that my hair match the status quo and once we were married, put a moratorium on all haircuts. By the time I left his controlling, abusive ass, I had hair that touched my ass. The day after I left him, I had my hair cut to a chin length bob.

Despite my Native American roots where long hair is a long held tradition for both sexes, I came to detest long hair. On a woman, it came to symbolize not just conformity, but oppression and misogyny. I went back to experimenting with radical cuts that were asymmetrical and even shaved my head and frequently wore Chelsea or Pixie cuts.

It wasn’t until the mid 2000’s that I allowed my hair to grow to my shoulders again, but even then I felt out of place and ended up cutting it after a short time. It wasn’t until it occurred to me that I’d allowed my first husband, who had so thoroughly controlled my every move the year we were married, to continue controlling me by allowing him to shape how I felt about my own hair, that I was able to let go of my preconceived notions about what it meant to grow out my own hair.

The desire to grow my hair out came about because of other controlling factors in my life; my health. There’s the idea that short hair is easier to care for, but in many ways, it’s not. It requires being washed sooner because it gets dirtier sooner and usually requires more product to style. It also needs styled every day, as the bed head is daily and it is INSANE.  I wanted to grow my hair out because I suspected it would make my life easier.

I also went through a period where I was losing my hair because of vitamin and mineral deficiencies, not to mention the copious myofascial adhesions all over my head from joint dysfunction in my TMJ and occipital regions. Once I began correcting those issues, I started to experience a lot of new hair growth that produced beautiful, healthy hair. I wanted to grow it out and see what it looked like.  I also knew it would save us money, as short hair requires regular haircuts, while you can go much longer between cuts when you have long hair.

Given these factors, growing my hair out felt like a triumph and a necessity, but I had to overcome my old bad tapes about what hair symbolized. I wasn’t sure I’d come that far, but I had to try it to see. In part, the act of growing it out exclusively for me helped to heal some of that old damage. It wasn’t for a mate or to attract a mate or because someone told me I should do it. It was solely because I felt it was the best thing to do for me. My husband, who lived through my constant nervousness and insecurity about my shoulder length hair in the mid 2000’s, remains carefully detached and silent about my hair. I don’t know if this is because he fears I’ll cut it if he expresses pleasure in it or if he really doesn’t care, but it works, even though sometimes I crave his input and occasionally wonder if he dislikes it.

20180504_131201.jpgSomewhere along the way, I realized that growing out my hair actually helped me to take back more of the power that he had stripped from me so long ago. Femininity is thought of as inherently weak, but women know this is a lie constructed to control and cage us. Our strength has nothing to do with the length of our hair or the color on our cheeks and eyelids. I thought I’d accepted and understood this, but I hadn’t really fully internalized it until I adopted the practice of wearing my own hair long again.

Now, as my hair stretches toward the middle of my back, I look in the mirror and sometimes remember the young woman with hair down to her ass and the powerlessness she was steeped in. I still cry for her sometimes, but she is no longer me, no matter how much we look alike. Nearly three decades later, I may possess a frailty of body that young woman would have had a hell of a time swallowing, but I also possess wells of inner strength she never knew existed.

I also see more clearly my Native American roots, which has always been a distinct point of pride for me. I always loved listening to my father talk about his Cherokee grandmother’s long hair, still solidly black long after her face grew withered with age. It probably doesn’t make a whole lot of sense to others, but it somehow makes me feel a little closer to the culture for which I’ve always craved being apart. Our hair was one of the first things settlers took from us when attempting conversion. I may be more white than indigenous in both how I was raised and in genetic makeup, but in my overall values, I am purely indigenous.

Shaving My Head

20180604_172142It’s amazing to think something we grow naturally can mean so much, but it does. That MCAD robbed me of my long, beautiful hair is a bitter pill that I’ve been trying to swallow since I shaved it off and shipped it out to be made into a wig for someone else on the first week of June. Every time I look in the mirror, I see a different person. She is nearly bald and looks like she has mange in bright lighting, as the purely silver portions of her hair disappear in reflected light. Once it grows out, it still won’t be the same, as it is now dark gray in some sections and silver in others instead of the dark brown I am used to. I have aged at least 10 years overnight, my smooth Ehlers-Danlos face an odd juxtaposition to my melanin depleted hair.

20180606_102623 It’s not really the effect of aging that bothers me. My plan was to quit dyeing my hair around age 50 and I’m only 4 years shy of that goal. I know it’s not cool to admit in the age of gray hair acceptance that seems to be sweeping the nation, but there’s a sea of difference between me and those other women, the sea of Choice. I loved my shaved head when I chose to do it. Being forced to do it because of my health, not so much.

My Facebook friends and my partner were all very cool about it, of course. They showered me with compliments, assured me that I looked even better with a shaved head than I did with long hair. I suppose I needed that support. I realize now that I’d dissociated just to deal with the act of cutting it off, even though I gave myself weeks to prepare. They told me to wear it with pride, and I assured them I would, as I’ve had the cut before and that didn’t really bother me. But it did bother me and still does. It bothers me a great deal that my hair was gone and so many people were saying they didn’t even like my long hair when I had loved it. Do I believe them? Not really. It’s hard to internalize any truth that doesn’t feel genuine to you, at least not for any length of time.

After that, I kept my opinions about my hair to myself and suffered in silence. I even decided not to post about it. The thing is, these feelings have stuck with me. The inch of growth I’ve seen over the last six weeks has only highlighted how painful the next two years will be. I try to look forward to all the different styles I can choose in the meantime, but the fact is that I dread the portion of the growing out process where it’s long enough to tickle and annoy my face, but not long enough to put up and I worry I won’t be able to get through it again, given the sensitivity of my skin.

20180623_184816.jpgI bought hair chalk to play with, hoping that it will help me feel more amicable toward my hair. My natural hair color works great for it and I love to play. But when I go to play with my hair or see a new updo I’d really like to try and it hits me that my hair is gone, things like hair chalk is little consolation. I’d rather be using the $100’s in hair supplies I have for my long hair. Instead, all the curling irons, straighteners, accessories and products will sit and rot while it slowly grows.

I have every intention of growing my hair long again, but the reality is you can never go back home. Will I even like it long now that it’s salt and pepper gray? Will it behave the same being completely natural or will the wiry curly bits finally have their way? Will I look more like the Crypt Keeper than the Lilly Tomlin I’d love to look like?

In the big picture my hair is really just a tiny thing I’ve lost to my illness. It pales in comparison to my severely restricted diet, losing my career, being trapped in the house for everything but necessity and so many other things. It may never be the same, but it will grow back and maybe I will love it even more, with its pretty silver. At this point, I’m not yet prepared to embrace it. It represents yet one more thing chronic illness has robbed me of in a long list that’s been rapidly accumulating lately thanks to my MCAD and while I have to take it, that doesn’t mean I have to be happy about it.

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Calorie Counting, Cardio and POTS

This video covers issues of exercise equipment calorie counts and why they’re never accurate, along with some information about heart rate and POTS. The second subject, I cover in depth in my article on POTS and exercise, but I wanted to cover a little of it video format for my YouTube page.

For your convenience, I’ve included the Heart Rate chart shown in the video so you can determine your ideal range. Remember, it is very important that all people with any form of dysautonomia monitor their heart rate during exercise to ensure they stay within safe limits. For more tips and information, see my post on POTS and exercise.

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If you’re looking for a good calculator to help you determine how many calories you’re burning, try this one, which has quite the variety of exercise options and allows for full user statistical input: https://www.mapmyride.com/improve/calorie_calculator/

I also feel like I should correct something I said that’s not accurate. When I shot this video a few weeks ago, I mentioned that I’d hit “my first 100 miles” on the bike, which isn’t entirely accurate. I’ve probably done twice that. However, my bike resets after a week of inactivity, so this is the first time I’ve clocked 100 miles before it reset on me due to inactivity. As of yesterday, I hit 155. This is important, not as a point of pride (though I admit, there is that), but because my PT helped me to realize how much I was setting myself back by taking long breaks when I went into flares or fell ill, so I’m not doing that anymore. Instead, during flares, I do a reduced work out, getting in what I can. My usual work out is a fairly hard hitting 90 minutes. When I’m flaring, I might do closer to 60 or even 30 if that’s all I can manage. I’ve done as little as 10 minutes of cardio and surprised myself by doing as much as my full 30. Don’t underestimate yourself. Once you manage to start exercising on a regular basis, you’ll be delighted by how much more energy you have, even during flares, especially if you take antioxidants and/or bioflavinoids.

If you need a boost to your energy levels, take a look at our supplements page!

Oven Roasted Potatoes

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With my husband and I both having to eat a low FODMAP diet and myself having to eat low histamine, we eat a lot of white potatoes and rice dishes. The biggest challenge was finding ways of flavoring them without using garlic and onion that we still found tasty and satisfying. You can only eat so many baked potatoes, but if you’re a spoonie zebra like myself, you probably don’t have a lot of extra time and energy to spend on side dishes.

Oven roasted potatoes are a good way to make something different that doesn’t take a whole lot of time. You simply need to wash your potatoes, cut them up, toss them with some herbs and throw them on a cookie sheet. The question is, how to make them delicious and fit the meal you’re making. Here’s three different options I’ve concocted thus far.

FODMAP Dieter’s: Be sure when choosing your cheese that it’s low FODMAP (contains no more than 1g carbs per serving).

Histamine Dieters: Traditional Oven Roasted Potatoes should be fine without modification. The cheese should be omitted in the Italian potatoes if you are react to mycotoxins (mold). The Cajun potatoes are NOT appropriate for people with mast cell issues or histamine intolerance because of the cheese and use of peppers. However if you happen to be able to tolerate these ingredients, go for it. We’re all different.

Traditional Oven Roasted Potatoes

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  • 3-4 red or russet potatoes
  • 1 teaspoon olive oil
  • A few dashes Dill and parsley
  • A few dashes Salt and pepper

Preheat oven to 375 degrees. Scrub potatoes and cut into 1-1 ½ inch pieces. Toss with olive oil and spices and place on a cookie sheet covered with parchment paper in a single layer. Cook 20-25 minutes, stirring once. Serve hot.

Roasted Cajun Style Potatoes w/ Cheddar

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  • 3-4 red or russet potatoes
  • 1 teaspoon olive oil
  • A few dashes each: paprika, cayenne, thyme, oregano, basil, salt and pepper*
  • 1-2 ounces cheddar*

Preheat oven to 375 degrees. Scrub potatoes and cut into 1-1 ½ inch pieces. Toss with olive oil and spices and place on a cookie sheet covered with parchment paper in a single layer. Cook 20-25 minutes, stirring once. 5 minutes prior to coming out of the oven, add cheddar. Serve Hot.

*Not appropriate for low histamine diet due to cheese, cayenne and possibly paprika.

Italian Style Oven Roasted Potatoes

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  • 3-4 Red potatoes
  • 1 teaspoon olive oil
  • A few dashes Basil and Oregano
  • A few dashes Salt and pepper
  • 1 ounce Shredded Parmesan cheese*

Preheat oven to 375 degrees. Scrub potatoes and cut into 1-1 ½ inch pieces. Toss with olive oil and spices and place on a cookie sheet covered with parchment paper in a single layer. Cook 20 minutes, stirring once. 5 minutes prior to coming out of the oven, sprinkle Parmesan over potatoes.

*Histamine Dieters: Do not use cheese if mycotoxin reactive

Prep time: 10 mins

Cook time: 20-25 mins

Serves: 2-3

Dissociation in the Doctor’s Office: Complex PTSD & White Coat Syndrome

Yesterday, I had to have the kind of routine foot surgery that almost makes a zebra feel normal. I had an ingrown toenail that had to be partially cut out. As I lay here recovering from this minor foot surgery yesterday, I marveled at my lack of preparedness for its aftermath, wondering if the part of my brain that usually kicks into hyperactive planning and preparing for these things has somehow managed to shut down or malfunction by some twist of brain fog. I mean, why not? It’s taken just about every other cognitive skill from me at one point or another. I was just telling my husband that I can no longer be our cruise director (my cutesy way of saying “organizer of activities”) because it not only depresses me to see the sheer volume of things I would like to do but cannot going on about the greater Cincinnati area, but because it becomes a massive time suck because I’m just so damned slow at everything. It also has little payoff, frankly. My one day a week out of the house is usually spent on grocery shopping, running errands, and medical appointments.

No, this is something else and I realized yesterday, it feels an awful lot like the PTSD symptom of dissociation. Maybe I slipped into a bit of shock during the procedure yesterday. The doctor did question if I was okay, sitting quietly, staring at my foot the way I was as he slid a scalpel under my toe nail and began cutting away nail as the blood pored all around it, but I laughed and assured him it was nothing. It felt like nothing. I thought was I was having a hard time processing was the fact that I could actually have such a procedure without any pain whatsoever. The only thing that hurt was the injection of local anesthetic, and even that didn’t hurt as badly as he seemed to indicate it would. By the time I was through the first idea on a list of reasons why that might be, my toe was actually numb.

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I had been concerned the lidocaine wouldn’t work. I have a long history of local anesthetic failures, from dentistry to kidney biopsies in which I have suffered on the table (or chair). But the doctor explained given the very nature of the toe, it’s almost impossible for it to not hit the nerve. We also figured my poor circulation in my lower half could actually pay off in this instance of so little tissue, along with all the fascia therapy I’ve done and he seemed to really dig my theory about myofascial dysfunction being a culprit in the mechanisms which prevent some zebras from benefiting from or reacting typically to anesthetic. Of course, resistance  local  anesthesia can also be genetic but in that case, it simply has no effect at all and I know I’m not in that group, as given a high  dose and enough time for it to move sluggishly through my tissues, it will do its job.

footBy the time my toe was numb, so were my emotions. I was preparing for a whole different experience. I was fascinated by my numb toe, I wanted to contemplate that, ruminate on the possibilities, but I didn’t really “feel” anything, physically or emotionally. I might as well have been someone else, a medical student maybe, watching the whole thing with analytical detachment, from having to hold down my own shaking leg to observing rivulets of blood pouring down my toes as he apologized to watching him mop up all that blood to reveal the canal of bloody meat he’d created in lieu of nail. It’s like I’d put on a ball gown to go to a ball game and didn’t understand why I couldn’t get comfortable with my surroundings.

What I realized later is that this numbness follows me to most of my doctors visits, whether I expect there to be physical pain or not. I’ve known for some time that I suffer from white coat syndrome as a result of all the years of disbelief and derision I’ve dealt with, North to mention the ones who carried out painful procedures despite my protests of pain because they didn’t believe local anesthetic resistance was a thing. This is the first time I’ve put together that what’s happening is dissociation.

It certainly makes sense. Given that I’ve suffered complex PTSD since childhood, I suspect I’m an expert at dissociation. It makes me really good in a crisis and shit at everything else. I’m so good at it, been doing it so long, I don’t even recognize what it is. I don’t even think my former therapists knew I did it because I’m so good at hiding it. In large part, it’s kept me safe and sane all these 46 years, this tendency to shut down and act as an observer, but it has no place in my medical care or my now safe and beautiful life.

Maybe that’s why I’m finally able to see my dissociation. I finally have a cadre of doctors who care and believe. I have real love and safety in my life and have for decades now, but I also had to stop muddying those waters by constant exposure to my toxic family. I also recently made the conscious decision to meet these issues head on. I am ready to face these truths. I fully believe all these things had to be necessary for these problems to come to light.

I suppose the next step is to figure out how not to dissociate every time I walk into a medical appointment. This is very important because when I dissociate, my memory fails to function correctly. I can neither supply doctors with sufficient answers to their questions because of poor recall than I can remember much of what they say after the fact. I have to rely on written instructions and notes and something always gets missed or lost in translation. Even if this weren’t a problem, the anxiety, sometimes full blown panic attacks that precedes these episodes are very hard on a person with multiple chronic illnesses that respond poorly to such hormonal fluctuations.

This is why it takes me days longer to recover from medical appointments even when they don’t happen to be physically taxing. Rarely can I ever walk away from a medical appointment without feeling  battled and bruised, even if nothing went wrong. It takes many appointments with the same practitioner before I can stop this cycle of panic attacks and dissociating. I was just getting there  with my PT therapist as our time together was coming to an end and I saw her 8 times over 3 months.

It also prevents me from making appointments to address situations that are quite necessary, such as with my gastroparesis, my MCAS, and even this stupid ingrown toenail. I fear going to a new practitioner so much that I will literally suffer for years with something that can be addressed in a single appointment.

It has apparently also begun to effect my ability to prepare for these things and the havoc they might create in their wake. I distinctly remember seeing flashes of what might be done to my toe in my mind weeks before my appointment. I’m not naïve about the ministrations required for ingrown nails. Instead of such visions prompting me to prepare, I took a thoroughly Scarlett O’Hara approach, so much so that tomorrow never came. It never entered my mind that removing part of my toenail would put me down for days, that I’d be taking foot baths for two weeks or that I even might have to curtail my workout routine. Mary Poppins (I was once called this by a former boss for my unfailing preparedness) sure as fuck fell down on the job this time.

The ironic thing is that for the first time in years, I had very little anxiety about this actual appointment. I didn’t even think about my white coat syndrome prior to my appointment. Was this because I was already in a dissociative state over the entire affair or has the run of good luck with practitioners and the hard work I’ve been doing to try to regain control over these neuroses started paying off? I suppose either or both are strong possibilities, but I haven’t come to any definitive conclusion.

All of this contemplation came about because of my desire to get on social media and whine about such an insignificant procedure and great appointment with an intelligent and knowledgeable doctor who introduced himself by his first name. Objectively I could see there was little to cry about. I deal with worse pain on any given afternoon. It was uncharacteristic. I’m not a fan of sharing every ache and pain online because it causes us to wallow and brings everyone else down. Don’t get me wrong. I’m highly sympathetic, I just feel like it does more harm than good, even if it might seem like a good way to bring awareness to invisible illnesses. But an ingrown toenail is common and not something which needs recognition, nor do I need or want pity, but I realized I was in fact feeling a bit traumatized over the experience,  which of course is laughable.

Laughable, at least until you realize it was traumatic precisely because I was triggered. Certainly the fact that it was a medical appointment was enough to do this, but I don’t think I really slipped into a dissociative state until the procedure began. It reminded me of all those times people have done things to me without actually being numbed, but I think it also touched on my childhood victimization, where I was forced to participate in my own torture in order to make it a little more bearable and safe. Holding my own leg down to prevent my shaking felt too much like holding onto the foot of the bed while my father beat me with a belt or taking my own clothes off for my rapist so he wouldn’t tear them from me.

I cry. I cry with the knowledge of just how neurotic I’ve become and how despite all the years I’ve spent getting to know the darkest, most destructive parts of myself to enable healing and growth, I am still blind to some of my own tricks. I cry because I berated and belittled my mother for being an expert ostrich with all things unpleasant while considering myself so brave for refusing to sugarcoat things, only to find that the old adage just might be right; we abhor in others the things we most dislike about ourselves. I cry because I realize no matter how old I get or how distant the trauma, I know I will always be a work in progress, forever chasing what looks like positive mental health. I cry because I have to release the safety of numbness and allow myself to embrace all the emotions that I have, be they good or bad, so that I can be a whole, healthy, functioning person. I cry because when I allow myself, I still feel pity for the little girl who endured so much before she even hit her 5th or 15th year.

Like all things in mental health, all I can do is find forgiveness in my heart for all of these imperfections and learn how to move forward, to do better. I’ll learn how to address the problem, and try to do better in the future. As I have been doing, so I will continue.

Chicken and Noodles

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Chicken and Noodles is a traditional, down home American dish. You can use just about any kind of vegetable you’d like so long as you can tolerate it, giving it a slightly different flavor each time you make it. This is thankfully one of my regular recipes that needed little modification for my new low histamine diet. Since there are so few things I can now have as far as condiments and sauces go, good old gravy has gained much significance for adding flavor and this meal is now in more regular rotation than it once was.

I like to boil the chicken breasts I use for this kind of recipe since boiling it produces less histamine, but I generally do a few pounds at a time and freeze it into individual cooking units immediately after to stall histamine growth. If you do the same, all you have to do is pop you prepared chicken in the microwave to defrost and then combine it with your other ingredients.

With a mast cell activation disorder, egg whites can be an issue. Even though I can’t eat a whole egg without reacting, I can usually eat food containing eggs. Egg noodles are the same. I’m also able to eat wheat so long as it’s non-GMO and doesn’t contain yeast. If you can’t tolerate egg noodles because of these ingredients, try an ancient grain pasta product in this recipe instead.

Chicken and Noodles

  • 12 oz precooked chicken tenderloins or boneless breasts
  • 8 oz egg noodles or gluten-free noodles
  • 2 cups fresh diced carrots, green beans or other suitable vegetable
  • 1 tablespoon butter
  • 3 tablespoons cornstarch, flour or gluten free flour mix
  • 1 tsp poultry seasoning
  • 1 tsp salt
  • 2 cups Low FODMAP Chicken Stock

Cut chicken into 1” pieces and set aside. Cook noodles according to package directions. Meanwhile, in a small pan, bring 1 cup water to a boil and add carrots or green beans and cook 8-10 minutes (until soft, but firm) and start the gravy.

In a small saucepan over medium heat, melt the butter. Add your flour and spices and form into a roux (paste). Wisk in chicken stock slowly. Bring to a low boil and allow to thicken until it coats the spoon.

Strain noodles and vegetables and combine with chicken. Pour gravy over top and stir together. Adjust seasoning and transfer to serving dish or plates.

Serves: 4

Prep time: 20 minutes