Saturday, June 30, 2018

A six minute phone call became a six week nightmare

I was having problems getting the second MRI in August scheduled.

First off I want to say this post is not about bashing the hospital. People make mistakes. But I decided to share what had been going on to raise awareness about how errors are made and what their impact can be like and why it is important to advocate for yourself or a loved one when something isn't being handled the way you intuitively know it should be. I've come to realize there is a fine line between "Was an error made?" or "Is this just how the hospital system works?" Pretty much everyone from friends to the medical professionals I talked to were all shocked at how my case was being handled. Sometimes jaw droppingly so. But I heard over and over it was just how the system works. If there is a next time, I'll now know to be more direct in questioning if a mistake has been made.

To those who work in medical scheduling I implore you to realize that when you schedule appointments you are wielding power that can literally make or break someone's spirit. You can cause (or erase) an enormous amount of stress an already stressed person is dealing with. Because of this mistake my already upended life was put on hold in all of the wrong ways. I don't know if it was the intention of the person who made the mistake, or the scheduler who didn't know or care enough to help me fix it the first time I called (or if they are both the same person) but I can tell you it left me feeling less than, insignificant, and frustrated beyond belief because my situation wasn't important enough to warrant help or even the promised call back.

It seems like if you might have inoperable, bilateral, deep brain tumors because there were spots that shouldn't be in your thalamus on an MRI, hospitals would make your case a bit of a priority. But, as it's turned out, and as many of you are I'm sure well aware, one's personal medical concerns and needs do not always equal speed when it comes to scheduling.

I was doing my best to be patient and to advocate for myself but I'll admit things had become extraordinarily trying lately. It all felt like a nightmare. The kind where something bad is trying to get you and you hit, punch, scream, and lash out at it... But you never make contact and you don't even know what you're aiming for :(

I always knew I would get the MRI, I just wasn't sure where, when, or how much it would cost as I explored the possibility of having to pay out of pocket for something that should have been covered by my health insurance. And because the wait time for procedures can be long, I was getting more stressed with each passing week that by the time someone was going to be willing to schedule my test it would be beyond the recommended timeline the Oncologist had ordered it for.

Two days ago I learned that the reason I had been having such an awful time of it the past six weeks was because someone had made an error in how my case had been protocoled. Meaning instead of being given the tests when my Doctor requested them on or around August 8th, I had been told I'd have to wait until the second week of September...

When I asked should I call my Oncologist? I was told no, the hospital would call them and ask if they would like to order a different test. WHAT? Um, NO. I told the scheduler I wasn't comfortable with that option at all. I literally said "These aren't bunions (in my feet), these are possible brain tumors in my deep brain" and that my Oncologist had clearly explained why she was ordering the specific tests she was ordering. I was assured a supervisor would be consulted the next day to see if and how I could be fit in on time. I was also assured I would be called back the next day. That was six weeks ago. The person who finally did call back was a different person who called by chance with no idea I had been put aside.

I know I could have called back but due to two other incidences I had lost too much faith in this hospital system. So rather than waste my breath I'd decided to try to go elsewhere for diagnosis and treatment.

That hasn't gone well or easily either.

First off my request to my insurance company to go out of state was denied out of state coverage authorization. It doesn't mean I can't go out of state, but it does mean I would have to pay for everything out of pocket. It took over two weeks to find out my insurance company would not grant that referral request.

When that didn't work my Primary Care Physician sent in an in-state referral to a different hospital system. Three weeks later I found out that I would be able to schedule a neurology appointment for my trigeminal nerve damage that had caused the chronic pain in my face for over seven years. This is good because there are doctors on staff there who specialize in trigeminal nerve damage.

The first Neurologist I saw (in the first hospital system) told me upfront he had never dealt with a case of trigeminal neuralgia and when the MRI didn't show a conclusive cause for my pain he basically left me hanging with a "running diagnosis" that is a symptom: Atypical facial pain. This might not seem like a big deal but I researched and learned that it can be problematic. Depending on which hospital system you are dealing with it can be translated as physical damage to a nerve that causes chronic pain, or it can be viewed as psychosomatic and all in one's head. This means an insurance can (and they sometimes do) withhold all future coverage for tests and treatments except for psychiatric care. So I can't just let things sit where he left them since I know my pain was caused by a dental procedure injury and was triggered by physical damage to the nerve.

I also need to know if my facial nerve damage has anything to do with the pressure sensitive mass still inside of my mouth. The one I mentioned in an earlier blog post. The one three doctors recommended I have cut out of my gum without first exploring what it is comprised of or determining if it is entangled in the peripheral trigeminal nerves.

So the new hospital will see me, but, here's the kicker: Their next available appointment isn't until May in 2019. I can call every day to see if there's a cancelation and should start doing it now but am going to take a few days before I begin because I really need to decompress from the scheduling nightmare of the past six weeks.

It was on that same phone call I learned that while neurology could help me with the facial pain issue a different department would have to diagnose and treat the non-specific spots (lesions/tumors/scar tissue) in my brain. But they weren't sure which department. After hearing what I had already been put through the woman I spoke to was wonderful and promised to call me back within three days, gave me her name and direct phone number, and said if she didn't call me back to please call her to follow up. She called back two days later and told me to contact the neurosurgery department.

Finally! I felt like all the waiting had been worth it and I was getting closer to getting the MRI scheduled. When I called neurosurgery the first thing I was told was that their protocol was different than other departments and while neurology had the referral, my doctors notes, and the MRI results in the hospital's patient database, their department could only accept the same information by fax. Sigh. So the referral and waiting process began again 9 days ago with a call to my Primary Care Physician's office asking them to now fax all of the information to that hospital's neurosurgery department.

I have to admit I truly began to give up hope at that point and began looking into paying out of pocket at Mayo Clinic to ensure the test was done on schedule. I researched online and learned cranial mris typically cost between $1,500 and $5,000 dollars. I figured with the perfusion and spectroscopy I was at the high end of those estimates or even higher and hoped it wouldn't cost over $10,000. I also had to hope they would be willing to only do the MRI and wouldn't require I have other numerous tests done that I wouldn't be able to afford.

When I called Mayo I was told there is a $5,000 deposit that needs to be paid upfront. A consultation is billed at $650 and if the deposit it not used up on tests any balance is refunded to you. If tests cost more you are required to pay the additional costs (I believe) also upfront. The person I spoke to at Mayo also suggested that some states have hospitals that are part of the Mayo care network, which means local doctors can consult with the Mayo doctors at no additional charge to me. There is one such hospital in Michigan. Unfortunately it isn't either that I am already in the process of dealing with. So, I put that idea on hold until and unless it was really necessary if the second hospital declines taking my neurosurgery case.

At this point I vented my frustrations to a friend in the medical field who then told me about insurance patient advocates. I had no idea such people existed. They are there to help you receive the treatment(s) you need. I called my insurance company and requested one. I was told a registered nurse would call within two days to help me. She called the next day and said "Tell me what's going on." An hour and a half later she basically told me there wasn't anything she could do for me. "Your on top of it" she said. Apparently I had already done everything she could suggest or offer except to call and ask the May 2019 appointment be moved up. But she followed that offer with that she had never been successful in having an appointment moved up in that particular hospital system.

So while she felt she couldn't help me, just knowing that in her professional opinion I had already advocated everything I could do for myself on my own did make me feel a little better even though the entire ordeal had been taking a terrible toll on my emotional well being.

I decided to continue to patiently wait to see if the second hospital would take my neurosurgery case and if they will, on what timeline?

Two days later (and three days ago) the phone rang. It was the first hospital's central scheduling department doing a standard follow up to see if I wanted to schedule my still unscheduled second mri.

When I explained to the woman who called what happened the first time I called six weeks earlier and what had transpired with no help and no call back she was shocked and I could sense quite upset at how I had been treated (and dismissed). She understood the immense amount of stress the diagnoses alone would have caused and felt really bad it had been compounded by my inability to have my case handled with the consideration it deserved. I also filled her in on my attempts to go to Mayo and the second hospital.

Knowing bilateral deep thalamic lesions were a red flag condition she quickly caught the error that had caused all of the problems. My order had been incorrectly protocoled so instead of being in their system as a higher priority patient, I was basically listed as less than that which is why the computer would only show appointments available in September and beyond. Once that was fixed it opened up the calendar for appointments in the beginning of August as my Oncologist had requested.

She took two hours out of her day and made many interactions with radiology on my behalf to clarify one of the really important questions that hadn't been clarified for me through the Oncologist's office regarding one of the tests, and to ensure the tests would be done on the day the Oncologist requested. She read aloud each message exchange to ensure I knew she was handling things for me. She literally offered to stay on the phone with me for as long as it took to get the tests scheduled. I cannot tell you how much I appreciated the gesture. I told her it was fine to call me back when things were settled. Ultimately (just over two hours after she first called me) my tests were scheduled for August but on two different days, two days apart.

I thanked her. When she said she hoped she was able to give me just a little relief I told her she had impacted far more people than me. My mom and auntie for starters, and my friends who had been checking in on me and supporting me through this nightmare would all be equally if not even more relieved than I was. She is my hero.

Shortly after we hung up I received a second phone call from the radiology department. Once they understood the scope of what I had been through they tried harder and were able to move the second appointment to the same day, an hour earlier than my first appointment. This means instead of three, two hour, round trip drives on three different days, I'll only have to drive to the city once for tests and then again 5 days later for the follow up consultation on the test results.

I'm doing my best to shake it all off now that it's settled and simply be grateful that I have my appointments, have gained experience, and am wiser as to the ways of self advocacy. I haven't once asked "Why me?" But will admit I have wondered why everything has to be so damn hard. I remind myself that's just life. There are even more things that go right than wrong but the wrong ones are the ones that stand out.

Because I do recognize that stress not only doesn't help my health but actually damages it, for now, I am focusing on being more positive and trying to get my somewhat derailed life back on track again :)

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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.

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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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