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Friday, June 8, 2018

If you are considering suicide or someone confides they are to you...

I can tell you from a personal perspective it has been jarring to read about the two celebrity suicides in the news this past week.

It isn't that the death of a celebrity means more or less than any other person's death. For me, and perhaps others who suffer from severe depression, when I see people who literally have the means to afford the best treatments (medications/therapy) but they still aren't able to overcome this awful condition it makes me wonder what hope is there for people like me? Or maybe you? All I can tell myself, and you, is that we are each unique. There is no one size fits all life experience or treatment plan. What may be too much for one person to bear may not be for another. I focus on that and tell myself that their pain cannot determine how I deal with my own.

I've suffered from severe depression since I was around 14 years old. Most of it in silence. When I wrote a blog post years ago I thought I had left depression behind. In recent years I've been tested several times over and with the help of my therapist, many of my very incredible and loving friends, and unconditional love and support from some family members I have weathered through each episode. I suspect one is never "cured" of depression, or its companion, anxiety. They seem to be like cancers that can go into remission for years or even decades but then reappear for seemingly no reason or come crashing down upon you when you've suffered a traumatic loss or event.

I wrote a blog post back in 2010 because I felt the urge to speak out on behalf of others who might have been struggling after a friend took his life. I didn't know he was depressed. You can read it here:  Feeling Suicidal? It Gets Better. In the past three years I've lost several friends to what I suspect was suicide. I say suspect because the cause of their deaths wasn't ever shared publicly.

So why post about this today? I wanted to share two perspectives. One is new since my original blog post about depression and is for people who may not even realize they are depressed because they simply feel the way they feel. I was in that situation for years. I just wanted to say that:
  • If you have researched best ways or least painful ways to commit suicide
  • If you actively think about taking your own life
  • If you have already decided how you would do it
  • If you think nobody will care or miss that you are gone
  • If you think the world would be better off without you
  • If you think you will never feel better
These are all signs that you are very likely depressed and are in jeopardy. You may say to yourself you're only being curious or pragmatic. Perhaps. But you are also very likely depressed which skews the logic you are using to consider such a serious thing and I hope you'll consider reaching out for help to overcome it.

One of my favorite people in the world, Jenny Lawson who is aka The Bloggess and is author of a very different kind of book on depression titled "Furiously Happy," openly shares her battles with mental illness on her blog. She is brutally honest, irreverent, and quite often very funny as she keeps her readers updated with what is going on with her mental health. Years ago Jenny did a post that resonated deeply with me. It included a picture of a wrist tattoo, not of a semi colon, but with two simple words that could save lives... "Depression Lies." 

It is so true. It does lie. The little voice inside some of our heads tells us that we aren't worthy to be here, and we listen to it. It doesn't matter who you are, your age, marital status, class, gender, ethnicity, or where you live. Some groups run higher risks of suicide but the point is depression can strike anyone. If you don't suffer from it it may be hard to imagine what it is like. If you do know its darkness you may not be able to imagine ever escaping it completely.

I have struggled with it for over half of my life and can honestly say that I'm glad I didn't let it take me. Everything that has happened, every person I have known, every place I have visited past the age of 19 has always felt like a gift. That was the first time I was truly at risk, had a plan, and was thwarted when a friend's mom (a psychologist) offered to counsel me (for free) and saved me.

Which leads me to my other point that I shared in my blog 8 years ago. Out of genuine concern many encourage people to seek help, to tell someone if they're depressed. But sometimes the outcome of such revelations are less than ideal. Not because people are unkind, but simply because they literally don't know what to say.

I am not a mental health expert but as someone who has been suicidally depressed several times in the past I have been told these things by people who love me and only wanted to help. Though said with love many of the most common responses I have been told were not helpful.

Here's why:
  • That contemplating suicide is selfish or stupid. This only confirms every negative, self hating emotion the person is already experiencing and does not help. 
  • Others are worse off. While normally someone might agree, when depressed, this comment can feel dismissive of the pain they are suffering from. The pain a person from depression suffers from isn't rational or relative to any other suffering. It is what it is and the intensity of it can be unbearable.
  • That God doesn't give people more than they can bear. For many, God (or life for the non-religious) does give some people more than they can bear. Others who have committed suicide and mental illness can be viewed as proof that some of us have limitations on how much we are able to bear. To a person of devout faith they may agree with this commonly accepted interpretation of Corinthians (1 Cor 10:13, from which the quote originates) when they are in a clear frame of mind. But when suicidally depressed their faith may slip from their grasp. I don't mean this in a blasphemous way nor do I want to start a theological debate. I'm just offering a perspective of how this statement may not help someone who is clinically depressed and may cause them to feel more despair, over their inability to bear or cope with what they are going through (because now they are failing both God's expectations and yours), rather than give the comfort the statement was intended to create.
  • "Snap out of it" or to "get over it." That's not how depression works so these suggestions aren't helpful at all no matter how well intended. You would't tell someone with any other potentially fatal medical condition to snap it away or to just get over it, yet many people truly believe that overcoming depression is that easy.
One thing you can say:

"I don't know what is the right thing to say but please know that I love you, care about you, and want you to feel better."

Then, if you're up to it, try to help them figure out how to help themselves by providing  phone numbers or links to organizations that can help them.

Also from my original blog post I would like to reshare:

"If you do open up to someone and they respond negatively or are judgmental, open up to someone else and don't be upset with the person who didn't know what to say or how to help. While some may know intuitively and others may have learned, most of us weren't raised or trained to know what the "right things" to say are in the face of suicide. It isn't that we (myself included) don't care, we simply don't always know how to help or the right thing to say."

To close, please be kind to yourself. Know you have every right to be here. Know you deserve to know moments of happiness. You deserve these things. We all deserve these things. To hope for them isn't hoping for too much. There will always be highs and lows, because that's how life is but have faith in whatever works for you and please keep trying to find your way out of the darkness.

If you ever feel that suicide is your only option please call the suicide hot line and talk to a counselor before taking your own life. I'm telling you that you do have another choice. Asking for help is the other choice to suicide.

Their national numbers are

National Suicide Hotlines USA
United States of America
Toll-Free / 24 hours a day / 7 days a week


Suicide Prevention Hotline

Crisis Text Hotline

Deaf Hotline: Suicide Prevention Lifeline

Worldwide Suicide Helplines can be found at Befrienders Wordlwide.

The information and suggestions in this post are given from a personal perspective and should not be interpreted as professional medical advice. Please consult a professional Counselor, Doctor, Psychiatrist or Psychologist for help regarding depression and/or suicide.

Sunday, June 3, 2018

First denial of coverage and good news too

It's been just over a week since I published the blog post about my medical issues. Here is what I can update at this time:

As expected my health insurance company denied my request to seek a second opinion out of state at Mayo Clinic in MN. While my primary care physician could appeal the denial I have instead opted to simply move on and have now had a second referral request sent to a medical center here in Michigan. This avoids the entire out of state authorization issue. I will admit it's frustrating, I mean why does the insurance company care if you are treated in or out of state if you're the one covering all of your own transportation costs to go there? Maybe you know? It's beyond me.

My new macrobiotic journey is going well. I've begun experimenting with the food I'm making to make it not only healthy, but delicious too!

I’m going to make another blog post video about the macrobiotic food and lifestyle changes I’ve made so far. If anyone has any specific questions (FAQ’s so far: Is Fred eating your food too? What is/are macrobiotics? Is it helping?) please let me know and I’ll answer them in the written post or in the video.

We have a tiny health store in Greenville and two large ones almost an hour away in Grand Rapids. I’m grateful we have any at all in proximity. The rest I order online. This is my second mail order shipment of ingredients and food. Thank goodness for UPS! This would have been so much more convenient in CA where Whole Foods and health stores abound.

On the bright side... In the video I mentioned that I was given the opportunity to display 12 of my miniature origami mobiles all in one place at one time. I installed them over two days last week and they're ready for the big Grand Rapids Asian-Pacific Festival launch night festivities on Monday June 4th from 5:00-7:00 pm at the Devos Place Convention Center on the Skywalk Level. I'll be there doing a folding demonstration for the duration of the event as well as on Saturday the 9th in conjunction with the Asian Festival taking place down the street at Rosa Parks Circle. Click Here for more details on the DevosPlace.org website.

When I stood back and looked at them I'll admit I felt a bit overwhelmed. While they each represent different customs, traditions, and icons of Japan, they also represent my life as an artist since moving to Michigan <3

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Thursday, May 24, 2018

Inoperable brain lesions (tumors), gliomas, or scars

So the post title? Worst multiple choices I've ever been given. I'll tell you right now I'm really rooting for scar tissue.

This is a long post. I tried to anticipate every question you may have and answer them all at once.

On the surface, it appears this all began in the fall of 2010. Good or bad there will be more to come. If you'd like to know how things are progressing you can check back or use the email subscription link near the top of the right sidebar to subscribe and have all future posts land in your inbox. I won't be updating my FB pages, Instagram, Twitter or my websites regularly about my health. I will keep all updates consolidated to this blog.

If you don't have time to read the post but want to understand what's going on here is a video synopsis:

Dental Procedure Trigeminal Nerve Damage

So my ridiculously prolonged and pain-filled saga began years ago... Not weeks, or days, or minutes, but immediately as the novocaine wore off following a dental procedure. I have been living with chronic pain in my face ever since that day in 2010. I even blogged it in the hopes that someone would know what was going on. Eventually my dentist said a nerve may have been damaged by the novocaine injection, but they never said I should see a neurologist, or any other doctor. Instead they focused on the periodontal ligament that runs along the gum under your teeth and said it might have become sensitive to pressure and if that was the case there was nothing that could be done. When the excruciating pain hadn't subsided weeks later I went to my Primary Care Physician. He dismissed the tandem pain as not possible and, like the dentist, told me there is no nerve that runs directly between the gum and nostril that connects the two areas. So I learned to live with it.

It wasn't until I moved to Michigan four years later that I learned about ganglia nerves from my new dentist and an ENT. As it turns out the ganglia nerves do, in fact, connect the two areas and everything in the middle of the face through the maxillary nerve. It is not a direct line between the two but there are branches of nerves that all connect to the same point of origin. But, just like in California, neither doctor offered any help or a referral to a specialist who could help me. The dentist in particular also concurred if the periodontal ligament was the problem there was nothing that could be done. So I continued to live with the pain.

Looking for Answers

This winter I finally decided to get to the bottom of it.

After going to the dentist for a routine cleaning at the end of last year, I set the wheels in motion by seeing an ENT on Feb 8th of this year. Two weeks later I discovered I had a small, pressure sensitive mass on my upper gum exactly in between the two areas of pain that have plagued me for so long. When I would lightly run my finger directly over the mass it felt like pins and needles, electric shocks, like when your foot falls asleep. Not excruciating but not a sensation that should be there. It was pressure sensitive and I could also feel it when I pressed the outside of my face.

My dentist was certain I needed a root canal. He thought the mass was the result of a tooth nerve dying and the necrotic (dead) tissue was "gassing out" into the gum line causing an abscess. I didn't think I needed a root canal but went to the endodontist he referred me to just to have the tooth tested to rule it out. The results of the nerve test? Inconclusive. Atypical. My tooth didn't react clearly enough for the endodontist to be able to tell if one was needed or not. So typical of my body to be atypical.

The First Piece of the Puzzle

The endodontist listened as I told him about the simultaneous pain that would occur several times a month and lasts for several days each time for the past 7.5 years. The pain is always the same and triggered by chewing. It begins with a tooth that has had a root canal aching (as if it hasn't) and stabbing pain (like knives) in my upper right gum line directly above the same molar. At the same time an awful searing and burning sensation occurs in my nose as if someone has poured acid into my right nostril. I also told him a couple of times a year the pain will last a week or more. When that happens it will migrate to encompass my entire upper right gum line. It feels as if all of the skin has been peeled off of my gum, acid is poured over the raw skin, and the end result? Hundreds of excruciatingly painful, constant, sharp, searing, electric shock-like pains will race across the entire gum unrelentingly for a week or more along with the stabbing gum pain and searing pain in my right nostril. The gum looks completely normal but the pain will become so severe I can't brush my teeth on that side for several days by the end of the week.

No over the counter pain relievers have ever helped.

Trigeminal Neuralgia (or Neuropathy)

The endodontist was the first doctor in 7.5 years to take me seriously. He listened, asked questions, then asked if I knew about Trigeminal Neuralgia? I didn't. It is a rare and awful condition. Like you wouldn't wish it on your worst enemy kind of horrible. If you Google it (as I did), you will see that it is also known as “the suicide disease" (because people take their own lives when they can't take the pain anymore), "sciatica of the face," and "the most painful disease known to mankind.”

He said everything I told him were classic symptoms of nerve damage and proceeded to make the suggestion not one of the other 9+ dentists, doctors, and specialists (I had told about the pain) had ever been willing to make: "You should see a neurologist," he said. Just like that. I had no idea I needed to see one. I had trusted that the medical professionals I had seen would have told me if I needed a specialist. But they hadn't. Instead they had all either been baffled, defensive, told me there was nothing that could be done if it was nerve or ligament damage, and worst of all were utterly dismissive of both my pain and concerns.

The possibility trigeminal neuralgia was the source of my pain was a huge shock and something that took some time to adjust to. The worst part about nerve damage? It can worsen over time. So while I'd learned to live with the pain, realizing it could (and most likely would) get worse sent me into a bit of a tailspin since mid-March.

After learning more about trigeminal nerve damage I then realized that I had been experiencing another symptom for years. When I wear my reading glasses, which is a lot, the very light pressure of the glasses resting on the bridge of my nose also triggers a strange facial ache beneath my right eye. If I hold the glasses off the bridge of my  nose with one hand it lessens. If I don't the ache localizes and intensifies beneath my eye until I have to stop what I'm doing and go lie down. Once I realized that it could be related to the same ganglia nerve bundle that was most likely causing my other pain I began wearing my glasses a little lopsided, so that all of the weight on the bridge of my nose is on the left side of my face. As soon as I did this I realized I was having fewer mouth/sinus pain attacks. Finally, just a small amount of welcomed relief.

A Mass in My Mouth

Over the course of 3 months the mass at the top of my upper gum had grown larger until it reached almost from the top of the gum all the way down to the top of the tooth beneath it. The three doctors all recommended cutting it out, without testing it first to see what it was. They all said if it looked suspicious it would be sent to pathology. I refused to allow them to remove it because it is literally located exactly in between my two areas of chronic pain.

By April I had asked all three (dentist, endodontist, and ENT) to please do a needle aspiration first. If it was an abscess, I could have it treated but I was terrified it was not what they thought it was and could be entangled in a nerve, and cutting the nerve could damage it more and cause my chronic pain to become even worse. None would do a needle aspiration. I was so frustrated. I had told each of them "IF I WAS A DOG WITH A LUMP SOMEONE WOULD HAVE STUCK A NEEDLE IN IT BY NOW, ASPIRATED A SAMPLE, AND SENT IT TO PATHOLOGY!" They all told me that's not how things are done on people. GAH!

The Neurology Consult

The ENT I had seen earlier this year had done a CT Scan that showed no visible cause for my pain. He had told me he didn't know what was wrong but would help me however he could. So he sent in the request for the neurology referral. It took 3.5 weeks to get in for a consultation. After passing the in-office neurologic exam I was sent for an MRI. The standard next step when X-rays and a CT Scan show nothing is wrong but the pain persists.

Friends warned me they're no fun and can make you feel claustrophobic. I laughed and told them I had had one before and would just pretend I was sleeping in The Glampette (my tiny travel trailer). LOL. It turned out the most traumatic part of the procedure was putting my navel piercing stud back into my navel afterwards. You cannot wear any metal during an MRI as the machine will pull it straight from and/or through your body. To put it back in place? It took close to a half hour. I was ready to give up and go find a piercing studio and pay someone to do it when it finally slipped in. Then I had to screw the tiny ball onto the end of the bar. OMG, I was far more traumatized by that than being in the MRI tube for an hour. LOL

The MRI Results

The MRI was on April 18th. The radiology technicians told me the results would be ready “in a few days.” When the Neurologist called the next morning I thought to myself "Uh oh." The test had been to determine if there was any visible damage or compression to part of the trigeminal nerve on the right side of my face. What I expected? That there would be no visible damage to the nerve because that’s how trigeminal neuralgia that isn't caused by Multiple Sclerosis often works. The damage can be invisible so it’s a clinical diagnosis which means if after having X-rays, a CT scan, and an MRI no cause for the pain is found, and the symptoms match the typical disease symptoms, you can be diagnosed based on the process of eliminating the most obvious cause(s).

“There is no damage to your trigeminal nerve,” he said. But, there was an “incidental” finding. The word is so innocuous. Incidental used to mean (to me) "Oh, by the way..." He went on to explain in diagnostic-speak “Incidental means we found something we weren’t looking for.” Turns out that "something" can be insignificant or the worst thing you can possibly imagine.

That was when he told me the radiology report said I have three lesions in the deep part of my brain. And because of their location they are inoperable. Um, what? I asked what exactly is a lesion? In short, it's a type of tumor and just like a tumor lesions can be benign or malignant.  Great. I have three brain lesions. Maybe not? At one point in the conversation the neurologist referred to them as gliomas... "Can you repeat that and spell it for me please?" I asked him. Gliomas are an overgrowth of brain cells/tissue and, I learned later, are often the kind of cells that cause the worst possible brain cancers.

Through my shock I asked the neruologist: “How concerned should I be at this point?” He told me it was too soon to say. Then he said: “I’d like to refer you to a Neuro-Oncologist.” I said: “Well that sounds like I should be VERY concerned!" He said he just wanted to be cautious.

He said they were "low grade" which I knew meant they were small because they had been found early by accident, and that was good news. But I also knew they shouldn’t be there. If they are malignant that is really bad but even if they are benign and grow or multiply that is really bad too.

He said what they found was “rare.” I literally laughed and told him “Of course it is!” During our consult I had stressed to him that everything about my medical history was “atypical.” I had heard so many doctors tell me over the years (usually while shaking their heads in puzzlement or disbelief) “Hmm, I’ve never seen this before,” or “This isn’t typical,” or “This isn’t what we usually see in someone with this condition,” or "Wow, that sounds awful."
  • There was the time my broken feet were misdiagnosed.
  • The time I survived natural gas poisoning because a spider happened to bite me while I was breathing in gas from a broken furnace.
  • Then there was the time I twisted my ankle that led to crutches and an ankle brace (that I affectionally nicknamed Frankenfoot) for almost two months before a doctor figured out the problem was hidden fluid trapped in my ankle.
  • One time a nurse practitioner at a dermatology office misdiagnosed a bacterial infection as a viral infection. That was one of the most painful episodes of my life. The infection raged for well over a week before it was properly diagnosed.
  • And when I got cat scratch fever but hadn’t been scratched by a cat?
I could go on. But I'm sure you're starting to get the point.

The neurologist said I could definitely add this to my list of atypical things that normally don't happen to people.

Because my facial pain symptoms are atypical to Trigeminal Neuralgia the neurologist wasn't able to give me a diagnosis. He offered to work with me if I wanted to pursue treating the pain of the trigeminal nerve damage but I declined. I had read enough about the two classes of drugs used (off-label) to treat trigeminal neuralgia. Because it's a rare condition very little research has been done on it so the medications used to treat it are anti-convulsants (for epilepsy) that usually make people feel so sick they stop taking them or antidepressants that also make people feel worse than they did before. Even if they don't make people sick, they seem to only work to partially to lessen pain and only for a short period of time (months) before they become ineffective and then you have to start all over again testing different versions of these drugs. My body reacts poorly to medications and I have already learned to live with the pain. I thanked him, declined, and asked if it gets worse to the point it is intolerable can I call you back and pursue finding a medication then?

The Neuro-Oncology Consult

It's worth noting that the neuro-oncologist told me I have two lesions, not three, even though the neurologist had described them as three. The one on the left is in two distinct areas of my brain with each area connected by a strand of tissue. She also decided non-specific spots was a better description for now since we don't know for certain they are lesions, gliomas, or scars. Scars? During my meeting with her the neuro-oncologist said the spots could be scar tissue that can form from head trauma or migraines of which I've suffered from both. Repeatedly.

Head trauma incidences:
  1. Was in a rear end car accident waiting for a pedestrian to clear a crosswalk so I could make a righthand turn on a green light when a car approached from behind and ran straight into the back of my stopped car. The impact was so great it killed my engine and I felt as if I'd been cracked over the back of my skull with a baseball bat. (Whiplash 1994)
  2. Less than three months later I was rear ended again in traffic that had stopped. As I stopped I looked in my rearview mirror to see the driver of the monster pickup truck behind me looking out of his passenger window, oblivious that all four lanes of traffic had come to a halt. He noticed with seconds to spare, slammed on his brakes, and plowed into the rear of my car, totaling it. (Whiplash 1994)
  3. Approximately 7 months later I was in a tour vehicle in Colorado that slid on black ice and plunged straight off a 30' cliff. You can read all about it here. (1995)
  4. Around a year later I was thrown from a horse. It bucked and reared eventually pitching me over its head. My friend said I landed flat as a pancake on my back and back of my head on the dirt road and literally bounced. I was knocked out for just a few seconds. (1996)
  5. Years later I almost knocked myself out getting into my car one evening when I misjudged, well, everything and whacked the right side of my head so hard against the top of the door frame that I literally saw white stars and gave myself a concussion.
Following these incidences I started having migraines. I've suffered from them beginning in 1996 or 1997. They were frequent until 2014. After moving to Michigan they happened less frequently. In the past couple of years I haven't had any at all. I now suspect the migraines may be related to one or several of the head trauma incidences but my former doctor in California never made a connection between them.

My wonderful neighbor went with me to the consult to be my extra set of ears. And she drove. When we got there I found a penny in the parking lot. I kept it and have not yet decided if it is lucky or not. There was the good news (the lesions may be scars) and bad news (she graded them as Grade 2 instead of the Grade 1 the radiologist had given them).

There isn't a huge rush to do a needle biopsy to see what the spots are comprised of. The problem is to do a biopsy a needle will have to be inserted all the way through to the center of my brain. In more than one location. Ugh. It's the only way to take the necessary tissue samples which I’m certain can cause a certain amount of damage and comes with all of the usual risks associated with any surgical procedure that requires general anesthesia, drilling through bone, and breaks the skin opening one to the risk of infections.

My first followup MRI will be in August. It will be performed with perfusion to see if there is any vascular activity in the spots and spectroscopy to see what the chemical composition of the spots are. If there is vascular activity that will mean they are lesions or I read, even worse they could be gliomas as gliomas often create their own vascular systems. If there isn't any activity they may be scar tissue.

A Second Opinion

Because there was no facial pain diagnosis following the MRI I am also pursuing a second opinion regarding my facial pain, the mass inside my mouth, and am wondering if all of my issues are related? Wish me luck! I had to go to my new (my old one was transferred to a different clinic) primary care physician to request the second opinion referral.

I went expecting to have to plead my case and wasn't sure I would be given one. She was not only empathetic, she had even take the time to research options for me noting that University of Michigan's Medical Center has several neurologists who specialize in trigeminal neuralgia. It was such an incredible relief to finally be believed. I didn't have to convince her of anything.

I'd like to go to Mayo Clinic because of their thoroughness and the collaborative way their specialists work. If Mayo Clinic is willing to take my case, then I have to go to my health insurance company to ask for authorization for out of state treatment the process can take up to 6 weeks. Most plans only cover ER/trauma care if you are injured or become sick while traveling. If I am not able to obtain authorization my PCP offered to write a new referral to University of Michigan's medical center. They their specialized neurologists (and a brain tumor program) I am sure they can also help me.

Carrying On

My first instinct was to stop my life. Just shut everything down and crawl into bed and never come out again. It took a couple of days to realize that would be the worst thing I could do. Instead I forced myself to go to the April West Michigan Origami Folding Club meetup a few days later and have done my best to carry on since then. I have stopped adding products back into my Etsy shop as they sell out or the listings expire. I have a list of custom requests I plan to focus on as well as continue to take small orders through Etsy. I decided just the other day to cancel the popup markets I was going to participate in this  year and focus on my health and learning how to not be anxious or stressed. I'm also seeing my therapist again. He's great and I always feel more centered after a visit with him.

Some days are harder than others. Heck, some moments are harder than others. There's been a lot of up and down emotions and surprisingly (to me) a lot of frustration and anger at all of the doctors and dentists who never took my pain seriously enough to try to help me figure out what was wrong. To be clear, I am not upset that they didn't know what was wrong. Trigeminal neuralgia and neuropathy are rare. The spots in my head? Even more rare. What I'm upset about is that none of them ever offered to refer me to someone who might have been able to help me. I always assumed that doctors cared and were there to help people. But now I realize that some are only capable of caring as far as the reach of their own knowledge base or egos allow them to. It's been a prolonged and painful lesson to learn the hard way.

Sometimes I don't feel like myself, not because of the spots... Though it does cross my mind... But from the stress. Like the day I rolled down my window and yelled at a guy who swooped in and stole a gas pump from me even though I entered the parking lot first. When I told my friend Judy she thought that was a good thing and that I should express my anger because it can be therapeutic. I told her I think there may be a fine line between therapeutic and lunatic. LOL

Other times it's stressful because if I stumble on a word, drop something, trip, can't remember something, etc I wonder is this a symptom that the spots are getting bigger and are impacting my senses, motor skills, or memory? Or am I just clumsy and distracted? The wondering is like a cloud that hangs over me. I tell myself not to worry until I know I really have something to worry about. I remind myself every day that these could be scars or benign lesions that will never become worse than they are at this moment but it's really hard to not wonder about the what ifs and go to dark places.

For now I am focusing on four things the rest of this year:
  1. My health = Reduce stress
  2. Officially launch my Patreon page
  3. An exhibit of 12 of my miniature origami mobiles all on display in one place at the same time. This will happen next month in Downtown Grand Rapids as part of the Grand Rapids Asian Festival. They will be displayed on the second floor at the DeVos Place Convention Center during the month of June.
  4. Completing my fifth ArtPrize entry so I can be at the Grand Central Market and Deli this fall.


If you know me at all it won't surprise you that I'm not going to just sit around and hope for the best. I wanted to do everything in my power to create a good outcome so I started practicing macrobiotics on April 25th.

Years ago I dabbled in them out of curiosity and personally met someone when they had been given a terminal cancer diagnosis with only weeks to live back in 1995. I took them a pile of my books and answered what few questions I could. They hired a professional counselor who created a specific diet and lifestyle plan for them and guess what? They are still alive today, over 20 years later.

So a week after the MRI results I found and hired a counselor too, Denny Waxman of the Strengthening Health Institute. He told me that even if I change my diet and lifestyle on a dime it may take several months before my body may begin to reverse its damage. So imagine my shock when just five days later that mass in my mouth? It had shrunk to less than half of its size and the electric shock sensations were completely gone! In the past two weeks it has continued to reduce in size though at a much slower rate. That it is reducing has made me very hopeful that my body is responding well to the changes.

I am actually enjoying the macrobiotic diet and am finding it easier than the lifestyle changes of chewing every mouthful of food 50 times until it liquifies and remaining upright for three hours after dinner. Many of the diet ingredients are traditional Japanese foods so they were already familiar to me. Right now much of it is a little on the bland side because I have reduced my salt intake. I can use a little salt or shoyu (soy sauce) while cooking but not a lot and not at the table. I've found if I plate the food beautifully? Even the bland food tastes better :)

I'm eating lots of whole grains like brown rice, millet, barley, and bulgur. And lots of different kinds of vegetables, beans, sea vegetables, pickled vegetables, a little fruit, and small amounts of wild caught, white meat fish. The main principle behind the diet portion of macrobiotics is balance. Foods cannot be too acidic or alkaline. So it's not a veggie free-for-all and almost all foods are either steamed, sauteed, boiled, or pickled/fermented. I've purchased two small donabe clay pots for cooking and love them! I wish I'd begun using them years ago! I also got a clay pot for making my rice and grains in. They are so much better than when made in a rice cooker or regular kitchen pot.

I have also noticed that the intensity of my facial pain has been dramatically reduced in the trigeminal nerve attacks I've suffered since beginning the new diet and lifestyle changes. That is amazing! For the first time in years the pain is subsiding! What was stabbing pain now feels like a pulse in my gum and the excruciating sinus pain now feels more like discomfort instead of searing pain.

The one area of concern I have about macrobiotics is that it is a nutrient-rich but low caloric way to eat. Having accidentally malnourished myself years ago when practicing vegetarianism I am being very careful to make sure I am getting all of the calories, vitamins, and minerals I need through my food. I read that when practicing the diet and lifestyle fully one can expect to return to their "natural weight" which is what you weighed at 21 years of age. Um. I think I was around 80'ish pounds back then. Most of my adult life I weighed 91 lbs. Which was on the underweight side of the BMI index but no matter how much I ate that's where the scale stuck. My parents used to joke I had a tapeworm and I've been accused more than once of having a hollow leg. LOL. Three weeks ago I weighed 120 lbs. I have now lost 12 lbs. and am guessing I will still lose another 18.

To be clear: I have every faith macrobiotics can reverse the damage if the spots are lesions or gliomas. There are plenty of documented cases where this has happened with various terminal cancer diagnosis'. The harder part seems to be staying on the diet the rest of one's life after you are healthy again. I will not have that problem. Living macrobiotically is a lifetime decision for me.

How You Can Help Me Through This

So now I have a favor to ask... Please send good thoughts, prayers, positive energy, mojo, and virtual hugs. I am open to any positivity, hope, and love you would like to send my way. It will all be very appreciated.

But as far as messaging me, please leave all questions as comments here on the blog. I learned after the 60 Second Doc went viral that I cannot answer every message across the internet and all of the social media platforms. When the video came out in early February I was inundated with messages on Facebook through my personal account, the FB Tinygami page, the FB West Michigan Origami folding club page, on Instagram, through my website contact pages, even on Twitter... It was too much. I still have not replied to all of them. You are welcome to send me messages on any of the above platforms but I will tell you now I will not be able to reply to them. If you post questions here on the blog I will do my best to reply to them here in subsequent FAQ posts.

When people ask me "What can I do?" I only ask this: Whatever our friendship has been the past few years since I moved to Michigan, please, let's keep it exactly the same. If we normally private message on Facebook every day, let's keep doing that. If we PM every few months, let's keep doing that. If we comment on each other's walls but don't message, please continue to do that. If we've talked on the phone from time to time, let's keep doing that. If we had already discussed your coming out for a visit this year, you are still welcome to come. See where I'm going here? More than anything I just want normalcy. After all, if the spots are scar tissue, or the macrobiotics make them go away, then nothing has really changed except for my awareness they are there. I'm not sick now.

Everything will be as it is meant to be...

It was while talking to my friend Judy, back when I was under the impression I had lesions or gliomas and I didn't yet know about the scar tissue possibility, that I gained some clarity on how I felt about all of this. If the news is ultimately bad I will literally fight for my life but am also a realist and know that none of us live forever. As we spoke I told her it would be ok either way. I realized that I was not like the guy in Tim McGraw’s song “Live Like You Were Dying.” I didn’t need to go sky diving, Rocky Mountain climbing, or ride 2.7 seconds on a bull named Fu Man Chu. I told her there is nothing I want to do and nowhere for me to go. I have no bucket list. In that moment I realized I am already living in exactly the place I want to be living: Out in nature, in the beautiful countryside, here in Michigan. I’m doing what I had always hoped and dreamt of doing: Being a working, full-time artist. And I am with the person I most want to be with, someone who I didn't ever expect to find: Fred. If my days are numbered I want to spend whatever time I have left just being here, doing exactly what I'm doing, with him. I don't want or need anything more that that. I have already received far more than I had ever hoped for.

“Life is difficult. This is a great truth, one of the greatest truths. It is a great truth because once we truly see this truth, we transcend it. Once we truly know that life is difficult-once we truly understand and accept it-then life is no longer difficult. Because once it is accepted, the fact that life is difficult no longer matters.”
― M. Scott Peck
The Road Less Traveled

These are some great links if you'd like to learn more about macrobiotics:

The Macrobiotic Diet: What You Should Know

Macrobiotic Diet: Balancing The Yin and Yang

Macrobiotics: A Principle, Not a Diet

Denny Waxman is the counselor I am working with. This is his explanation: A Macrobiotic Definition That Actually Explains Macrobiotics


My apologies. For some reason the automatic comment option isn't working and I haven't been able to figure out how to fix it.

Thursday, May 17, 2018

My blog url will be changing

Though I've rarely posted on this blog since moving to Michigan in 2014 I will be resuming posting here again in just a few days.

The reason for this post is I've decide to change the url from www.TheFlirtyGuide.blogspot.com to StacieTamaki.blogspot.com. My impression is that once I do that any and all links will be broken connecting to my blog across the internet. *Gulp.* That's why I hadn't changed the url all of these years. But The Flirty Guide (The bridal resource I once ran) is now so far back in my past I feel compelled to take the plunge and just move forward. There may be ways to preserve the old links but I'm not going to worry about them. Eventually Google will create new links to the content (I hope) and those who want to find me will be able to do so at www.stacietamaki.blogspot.com

If you are already subscribed to the blog I'm not sure if you'll continue to get RSS updates when I create new posts. That's why I'm giving you a little heads up right now.

Thursday, June 22, 2017

I'm doing it Elle, I'm creating a community

I lost a friend. She was crazy-smart, very kind, thoughtful, and generous. She was a caring person who I had the good fortune to meet while I was living in CA (before moving to MI). Even after I'd moved we would often post on each other's walls and message privately on Facebook. We were going to go camping together, someday. She loved my tiny trailer and envisioned living a simple, downsized, even possibly off-the-grid kind of life someday. I came very close to being able to visit her one last time but was just a bit too late... I was 11 days away from driving through the city she lived in. She passed away unexpectedly last June.

One of the last conversations we had on Facebook was one where she had shared she had found a group of people who were a new community that welcomed her into their fold. When I told her my idea to start an origami folding club, she whole-heartedly encouraged me to do so. She believed being part of a community could be a good thing.

One of her favorite pictures she shared on Facebook, with Woz.

It took about a year but I did it. The folding club's first meetup was last Saturday. In my heart the club is for the people of West Michigan, but it will also always be a bit of her legacy because even though she's gone, her support and encouragement will always be a part of it

I miss our chats and I miss you Elle. You are gone but not forgotten.

To see the schedule and RSVP to be a part of the West Michigan Origami Folding Club you can visit its web-page or join the Facebook Group:


Our hosting venue is the:
Kent District Library
200 N Monroe St
Lowell, MI 49331

The dates of the club's next meetup is:
Saturday, July 15th 9:30-11:30 AM

Monday, April 10, 2017

Art.Downtown 2017, Grand Rapids, MI

Last Saturday I spent the day on Division Ave. S in downtown Grand Rapids for the annual Art.Downtown event. It's kind of like a mini ArtPrize except there is no voting/contest aspect and it only lasts for a single day from noon to 9:00 PM.

There were four artist's sharing their work at the venue where I was invited to participate. Our curator, Zahara Avalon, also set up an interactive aspect asking people to write down on a restaurant order pad "What does it mean to be American?" The guests were then invited to hang their responses on string strung throughout the venue. The responses ranged from sobering:

"Despite having already been enrolled at GVSU... I had to provide my birth certificate to take one class at LMU. Why couldn't they have accepted my transcript?"

To cynical:
"Being American means ignoring the needs of those less fortunate and being self centered. Then I Tweet it!"

To humorous:
"I eat burgers and hotdogs"

For me, Art.Downtown was quite different than ArtPrize mostly because instead of bringing mobiles of thousands of tiny cranes that represent Japanese traditions and customs I created three small framed pieces (11"x14" frames) that told a very personal story. Would people like them as much?

I honestly didn't know what to expect. I was in a pop-up space, a former (and future) restaurant that is currently unoccupied. That's it to the left in the picture above. Would there be 20 visitors? 200? 2000? I didn't count but can say I spoke to more than 20 and less than 2000 people and they were all great! I knew some, met many new art lovers, and had the most fun I've had, well, probably since ArtPrize last fall :)

The thing that made me happiest was that quite a few people who had seen my past ArtPrize entries commented they recognized me or my work and said that this exhibit was "so different," "more personal/powerful/heartfelt," and that they loved the framed format, that it "suited" the miniature scale of my work. I truly couldn't have hoped for a better response. That people connected with my work and appreciated that these pieces had required more thought and vulnerability made me glad I took the chance and strayed outside of my ArtPrize-mobiles-comfort zone.

If you wanted to come but couldn't make it, here is the exhibit and the words I printed onto small signs to set above each framed piece along with my artist's statement and a renzuru diagram so that people would understand that the strand of cranes in the "Interned" piece was folded from a single sheet of paper.


(Artist's Statement)
This collection comes from a more personal place than the sets of 1000 miniature cranes I’ve made in the past. When people I know say “We should round them (people of MiddleEastern descent and/or Muslims) up and put them in a camp in the desert” or that my family was interned to “keep them safe,” I am reminded that I need to continue to speak out about the injustices imposed on American citizens when 75 years ago President Roosevelt signed Executive Order 9066 leading to the incarceration of over 110,000 Japanese Americans.

My reply is always that they are perpetuating the same fear and/or hatred that led to my family being placed behind barbed wire, with armed guards who would have shot them if they tried to leave, and losing over two years of their freedom. It was as wrong then as it would be to repeat the same injustice today.

My dad (a Private First Class in the United States Army) was also held behind barbed wire after his company was sacrificed to protect two retreating companies during the Korean War. He was captured on January 1, 1951 and held until August 6, 1953 after the signing of the Armistice. When he returned he faced racism even as a decorated POW-MIA veteran because he looked like the enemy, even though he was neither North Korean or Chinese.

And yet my parents saw past what they had each endured and held no racism in their hearts. They passed their tolerance and shared belief in treating people as individuals (not labeled groups) on to me. As a result my life is wonderfully rich, filled with a wide range of friends more diverse than they could have ever expected or hoped for me to have.

Never forget. Speak out. Be kind. Have faith.
- Stacie Tamaki


American? This is how Japanese American citizens were commonly viewed by the government and public after Pearl Harbor. Instead of seeing individuals, they were reduced to (and judged by) the color of their skin.


Families were given less than a week to vacate their homes and report to a “relocation center” bringing only what they could carry in a single suitcase per person. This is my family in the camp at Heart Mountain, Wyoming where they were held for more than two years.


As a child I wanted to blend in. I often felt conspicuously Asian. Now? I look around and see people embracing diversity rather than tolerating it. Over time I’ve reached a point where I’m more interested in being authentic and sharing my heritage rather than ignoring or hiding it. There is beauty in every culture, my art is my way of expressing mine.

And just like ArtPrize, because I was making a few cranes to put on the display table thanks to the suggestion of a guest, several other guests asked for paper and made me things! I love that I always go home with more art than I arrived with when I participate in public events :D A huge THANK YOU to everyone who shared their talent with me!

To be honest I don't really know that much about the Avenue for the Arts, the host of Art.Downtown. I will have to learn more about them on their website.

Thank you to Avenue for the Arts, my curator Zahara Avalon, and all of the guests, volunteers, and the artists I shared space with Carlos Gomez, Abigail Yoo, and Erick Picardo who made Art.Downtown such a fun and special event!

This post was originally published on my work-only blog Tinygami.wordpress.com.
For lifestyle + origami updates this (I Found the Place) is the blog for you.

Thursday, April 6, 2017

This weekend: Art.Downtown 2017

Coming to Grand Rapids, MI this Saturday? If you are maybe I'll see you. I'm participating in the Art.Downtown one day event hosted by Avenue for the Arts and will be at my venue (122 Division St S) from noon until 5:00 PM though the exhibit runs until 9:00 PM

"AMERICAN" The exhibit asks: "What does it mean to be American? The space focuses on intersections of Asian and Hispanic/Latinx identities especially in a political climate of anti-culture/color/immigrant."

My contribution to the installation will be three framed pieces depicting my maternal family's experience during the Japanese American internment and how I see myself as an American. The timing was impeccable. It felt as if no sooner had I posted the image above on Instagram to commemorate the signing of Executive Order 9066 on February 19th, the next thing I knew curator Zahara Avalon was contacting me to see if I'd like to be a part of the installation she was producing.

So I'll be there. Not with thousands of cranes, just a handful that came from a different, deeper place in my heart

Facebook Event Page
Saturday April 8, 2017
12:00-9:00 PM (I will be attending from noon until 5:00 PM)
122 Division Ave S
Grand Rapids, MI 49503

This post was originally published on my work-only blog Tinygami.wordpress.com.
For lifestyle + origami updates this (I Found the Place) is the blog for you.

Saturday, February 25, 2017

Tinygami is coming to Home 2 Home in Greenville, MI

I've often said my creative-process is that I see pictures in my head. For instance when I think of something I'd like to create I can see the finished whatever in my head and can, for reasons I can't explain, see how to construct it to reach the end result. The other day it happened with this display case...

I'd been doing a ton of research on Pinterest about how to create the booth for the Made in Michigan Pop-up Markets I signed up for in May and July. Knowing me I'd wait until mid-May to finally put everything together. The things I wanted most were:
  1. Portability: I need to be able to lift and move all of the display fixtures myself.
  2. Wind resistance: It can get VERY windy in MI. So I want to create a booth that has the option of placing glass doors or some type of see-through barrier around my items just in case I need to.
  3. The option to lock it if needed.
  4. Cute: It has to be cute! And fun, and beautiful, and elegant. That's all :)
And just like that I stumbled upon the perfect one at Kaleidoscope of Times (a local antique mall). It's a mere 9.5"(d)x 24"(w)x48"(h). It's an old rifle/gun display case that had already been converted into a more generic display case. As soon as I saw it I knew I could remove the top two shelves and replace them with glass shelves. I could see it in my head. And it came with two sliding glass doors! Hopefully it will turn out something close to the illustration above.

The drawer at the bottom will come in handy on windy days because I can put bricks in there to help weigh it down as well as come up with some type of additional support system so that it won't ever blow over.

But guess what? It turns out I'll be using it even before the May Pop-up Marketplace! I was perusing Facebook and saw this post by a brand new store opening in Downtown Greenville, MI next Wednesday. I dropped by the next day even though they aren't officially opened and guess who's renting a Tinygami sized bit of space at Home 2 Home? Yup, ME!

So this little display case along with the table I use each year at ArtPrize will be the official retail launch of my business in Greenville. I have to have it ready to set up there by Tuesday so I've been busy. Since purchasing the case two days ago I have:
  • Purchased metal tracks and shelf pegs so the shelving can be adjustable
  • Cut the metal tracks to length
  • Removed the wood shelving. I did repair the bottom shelf as the trim was falling off and it was quite uneven in places so I sanded and sanded until I'd leveled everything off.
  • Filled all of the nail holes and the routing along the inside where the rifle stock rest/divider used to be.
  • Ordered 5 glass shelves.
  • Looked for new drawer pulls but didn't find any that I liked that fit the existing holes.
  • Sanded everything with 60 grit sandpaper along with the tips of my fingers :(
  • Located a locksmith that sells a ratchet keyed lock that fits to the glass display case doors.
  • Sanded everything with 150 grit sandpaper wearing gloves so my fingers are better :) But then I accidentally dropped two big clamps on my head (don't ask) so was still a bit worse for the wear today.
  • Nailed the bottom wood shelf back to the bottom of the case to hide the indentations where the rifle's butt plates rested.
  • Applied the first coat of primer.
  • Whew!
Still left to do:
  • Apply the second coat of primer.
  • Buy blue paint.
  • Paint the interior of the case aqua blue.
  • Go pick up ratchet lock.
  • Pick up glass shelves.
  • Find prettier drawer pulls.
I will post a new picture when it's done and delivered on Tuesday and show you how it turned out. For now I'm leaving the exterior white just because I'm short on time but do plan to paint the exterior in the future... I just haven't decided exactly how I want it to look. I have a few pictures in my head I'm contemplating ;)

Opening: March 1, 2017

Home 2 Home
310 Lafayette St
Greenville, MI 48838
(616) 835-9595