DEFINITIONS

Misdiagnosed (n) - an incorrect diagnosis of an illness or problem (Oxforddictionaries.com).

     Sentence - 'face pain caused by trigeminal neuralgia can be misdiagnosed as a teeth and sinus problems.'

Trigeminal Neuralgia - A chronic pain condition that affects the trigeminal nerve, which carries sensation from your face to your brain (Mayoclinic.org).
     Sentence - 'Trigeminal neuralgia causes excruciating pain and is also known as the suicide disease.'

Cerebrospinal Fluid Leak [CSF] (n) -  A condition that occurs when clear fluid that supports the brain and spinal cord escapes into other parts of the body (Mayoclinic.org).
     Sentence - 'A CSF leak can occur when the brain's dura is cut during sinus surgery.'

Brain Prolapse (n) - A small [2 cm] portion of the frontal lobe herniated into the [right] sinus from a hole in the brain's dura (personal description).
     Sentence - 'If the membrane that protects the brain gets damaged during sinus surgery, a small hole may continue to tear until a portion of the brain to prolapse into the sinus cavity.'

Frontotemporal Dementia [FTD] (n) - A group of uncommon disorders that primarily affect the frontal and temporal lobes of the brain--the areas generally associated with personality, behavior, and language... is often misdiagnosed as a psychiatric problem (Mayoclinic.org).
     Sentence - 'A person with frontemporal dementia may experience memory loss, clumsiness, anger, or aggressive changes in mood or behavior.'

Mental Health (n) - A person's condition with regard to their psychological and emotional well-being (Oxforddictionaries.com).
     Sentence - 'Drastic changes in mood that affect someone's mental health can be a result of both bipolar disorder and frontotemporal brain atrophy dementia.'

Bipolar disorder (manic-depressive illness] (n) - A brain disorder that causes unusual shifts in mood, energy, activity levels, and the ability to carry out day-to-day tasks (NIMH.NIH.gov).
     Sentence - 'To some people suffering from bipolar disorder severe depression feels like being trapped in a black hole, but mania feels like being possessed by a demonic force.'

Psychosis - Conditions that affect the mind, where there has been some loss of contact with reality. A person may also experience depression, anxiety, sleep problems, social withdraw, lack of motivation, and difficulty functioning overall (NIMH.NIH.Gov).
     Sentence - 'A side effect of being prescribed incorrect medication by a psychiatrist can be psychosis.'

Self (n) - A person's essential being that distinguishes them from others, especially considered as the object of introspection or reflexive action (Oxforddictionaries.com).

     Sentence - 'losing control is an aspect of many root causes that cause a destruction in a person's sense of self.'

Anger (v) - A strong feeling of annoyance, displeasure, or hostility (Oxford.dictionaries.com).
     Sentence - 'Mania used to make me feel  like I could accomplish anything, but now it generates only anger.'

Rage (v)- Violent uncontrollable anger (Oxforddictionaries.com).
     Sentence - 'FTD can cause unknown sadness one minute, or intense rage the next.'

Loathing (v) - A feeling of intense dislike, disgust, or hated (Oxforddictionaries.com).
     Sentence - 'Excessive cursing at family members when angry can cause intense feelings of self-loathing.'

Little Annoyances

Annoyance (n): A feeling or state of being annoyed. 

     Synonyms: irritation, exasperation, vexation, anger, displeasure, aggravation, nuisance.

A day in the life of... 

For the sake of a day, the clock starts at 12am. 

12ish... realize I have to pee. Stiff, painful, and unsteady walk to the bathroom and back to bed. Uncomfortable, but able to fall back asleep for 90 minutes.

2ish... realize I have to pee. Stiff, painful, and unsteady walk to the bathroom and back to bed. Thirsty, but if I drink something I'll have to pee again. Annoyed and uncomfortable, but able to fall asleep.

4ish... realize the dogs are banging against their crates to tell me they, too, have to pee. Stiff, painful, and unsteady hobble out to the front room. Three feet before the kitchen, I tell myself to start the coffee pot before I let the dogs out.

I pass the coffee pot, open the dog crates and scoot them out the back door and remember... crap, I forgot to turn on the coffee.  Irritated, I hobble back to the kitchen and start the coffee.

Neuropathic pain eases as I organize the dogs bowls and get their breakfast ready before I let them back in the house. Four bowls: three have dry kibble, one bowl is empty.  I stand there confused. Crap... what do I need? 

Oh yeah. Peewee's refridge dog food. Open fridge, stare long enough to say, "What am I doing? Think, think, thing." Turn around and see the empty dog bowl and say, "Oh yeah. PeeWee." Look back at the ingredients inside the fridge and say, "Crap... What am I looking for?" Then before I turn around again I see PeeWee's food and get if for her bowl.

I fix my coffee in a plastic Starbucks cup with a lid so my shaky hands won't spill the hot liquid when I sit down to drink it. I stare at the black liquid. Crap... what do I need? Oh yeah, creamer. I open the fridge, thinking creamer for coffee as I process each item of the same size in the fridge for about 6 seconds.

"Where's the lid?" I know I had it when I filled my cup. The little annoyances are growing. "It was right there." Agitation takes over and I'm no longer thinking crap. Other 4 letter words pop out of my mouth as I scan the room for the lid to my coffee. I spot it on the toaster. Why the heck would I have put it there? My temper cools enough for me to attach the lid on my cup and walk toward my chair.

The dogs scratch at the back door. Crap... I forgot to let them back in. I set my coffee down on the table, walk to the door and they scurry in to find their breakfast. I make it to my chair but realize crap... I don't have me coffee. Where did I put it?

Every time I open the fridge, go to wash clothes, feed the animals, do dishes, use the microwave I stand there a bit confused until I have to ask myself, "What do I need?" or "What was I doing?" or "Think... think... think."

This crap goes on and on all day long, sometimes over a hundred times a day. Each question I ask wears at a spot in my psyche and after a few hours, I've lost patience with myself and everything around me. Once I've lost my patience, I hate myself, life, and everything around me because I'm now manic.

Remember When...

Remember when you would drive your daughter to high school and songs from her favorite bands would play on the radio and you thought you were cool because you knew the names of the bands and could talk to her about them?

That was less than eighteen months ago. Now, a song comes on that we used to rock out to and I can only turn it up and ask either, "who's this band, again?" or "we used to like this song, right?"

Remember when you could read a news article or a book, then turn the page to continue what you were reading because you remembered what you have read?

That was me this time last year. Now, scrolling down on a Washington Post article causes a little confusion about what I was reading in the first place. I sometimes have to scroll back up to remind myself what I could have possibly found interesting enough to have chosen to read the article in the first place.

Remember when you could watch a television show with the volume at 17 and without the captions on?

I can't remember when the volume kept creeping up because it's on a steady 47 or higher now, but a little over a year ago I had to have the captions turned on so I could catch up with what was being said. Now, even with the loud blaring of sound and the captions, my brain's processing only lets me catch about 70% of what I watch. Problems solved with streaming because I can watch the show 2 or 3 time to catch what I miss. Too bad I can't use this technique when I have to interact in real life situations. Missing 30% of what people try to tell me is extremely frustrating.

Remember when you had a favorite video game app that you would play all the time?

Othello (Reverse) was my phone app game and I played it all the time (multiple times a day, everyday, for over a year.) Then I forgot about it  until a day ago, but all I could remember was there was a game I used to play that I really liked. The thing is, I don't know if I hadn't played for a day, a week, or a month before I'd forgot about it.

Remember when you knew what day of the week it is?

Last year, remembering the day of the week became associated with what television show you liked (Westworld or Game of Thrones: Sunday night on HBO) or when the grocery store ads come in the morning paper (Wednesday). Now, even that is hard to keep straight.

Remember when you  could make lists (Costco, dry cleaning, pet store for chicken feed) in your mind of things you needed to accomplish while running errands?

Now, only errands must be done individually, and lists must be made.

Remember when you could balance your checkbook in your head, knowing exactly how much the balance was, when automatic drafts would be pulled, etc?

I could do that with three separate checking accounts. Within the last few months, insufficient fund emails have become the norm.

Remember when you could remember?

What's In My Head?

If you want to know what mania feel like, then believe me when I say the Cranberries nailed it in their song Zombie :

... In your [my] head, in your [my] head
They are fighting
With their tanks and their bombs
And their bombs and their guns
In your [my] head in your [my] head they are crying ...

What's in your [my] head?

... When the violence causes silence 

... It's the same old thing since 1916 [I was 19]
In your [my] head, in your [my] head
They're still fighting
With their tanks and their bombs
And their bombs and their guns
In your [my] head, in your [my] head they are dying ...

Kate Spade and Anthony Bourdain... WE understand!

The "WE" I'm referring to is all the people who suffer with mental illness. Our hearts bleed for you both (also Robin Williams, Chester Bennington, Chris Cornell, Jr. Seau, Kurt Cobain, etc...)  because "WE" know the pain you felt and what drove you to that helpless place.

People whose serotonin receptors work properly may say, "It's such a tragedy," or "I wish he/she would have been able to reach out to someone," or "He/she had so much to live for," or "If only he/she would have gotten help," and the worst of all, "Suicide is a selfish act." Mentally healthy people will never understand.

Below, I speak from my perspective as a bipolar individual and not as the collective "WE" above. To the mentally sound I ask the questions:

What if they [people mentioned above] had don't all those things? I know I have.

What if they told family members and friends how sad they were, not just once, but many times? All the pep talks and reassurances from said family and friends were just band-aids that could not stop the internal bleeding. It doesn't matter how much I know that my family and friends love me and care for me--as I do for them--there comes a time when burdening others stops becoming an option.

What if they have been to doctors and were misdiagnosed? I was.

What if they were prescribed a medication by a licensed psychiatrist to help with the symptoms of depression, only to have one of the side effects be thoughts of suicide? This happened to me.

What if they were given another medication to help with rage, only to find the medication made them psychotic and the only way they could feel anything was to self-mutilate? For me, cutting became the only way for me to feel human.

What if they knew they had a lot to live for? I know I am a talented writer, that I am kind, and funny. I know I have a wonderful family who loves me that includes: a wonderful hubby, two incredible children that I would love to see married, a beautiful daughter that I would love to see graduate from college...

Did they not have these same feelings for their children or spouses? Of course they did. But there comes a time when the pain becomes too much.

For me, severe depression is like being swallowed by a black hole. In this space, sadness and feeling like a burden to  everyone you love is overwhelming, but mania is worse. Mania is rage. Rage that gets so bad I fight the desire to cut off my tongue. How can I ask my family to keep forgiving the unforgivable crap my words become when I lose control? I don't like treating them like that, IT IS NOT THEIR FAULT, and truly believe that they would be better off without my demonic behavior.

Did they want their love ones to be sad or blame themselves? This is the dumbest question of all and is one that constantly rotates through my thoughts my  like a turd a circling a toilet bowl. Of course I would never want the people I love to be sad or blame themselves; but as much as I would not want my family or friends to experience those feelings, a note beside my body would not prevent it.

The band Blue October expressed this perfectly in their song Hate Me, because, for me, it's easier to be angry than sad, and hating someone puts the blame on them.  (Blue October's YouTube Channel for Hate Me https://youtu.be/dDxgSvJINlU )

Complicit Christians

For the past several nights, I have been awakened by an obsessive-type of anger about the lack of anger and resistance exhibited by members of the Church of Jesus Christ of Later-Day Saints. Maybe it has something to do with the news of a new leader of the Church being confirmed, or the fact that Senator Jeff Flake finally stood up for something by condemning the President on the continual attack against the media, or maybe it’s about time I write how disgusted I am at Mormons (and Christians for that matter) at their lack of compassion for the plight of immigrants.

Have members of the Mormon Church forgotten the history of persecution during the early days of the Church’s organization? How their ancestors’ houses were burned, women were raped, members were killed, and their leaders were tarred and feathered. And how they, as a people, were chased out of state after state, denied their constitutional rights to liberty, the ability to practice their religion, and live a life in pursuit of happiness. Do they not remember that there was an 1838 extermination order given by Governor Lilburn Boggs in the state of Missouri (Missouri Executive Order 44) that gave license to kill members of the Mormon Church? It stated, "…the Mormons must be treated as enemies, and must be exterminated or driven from the State if necessary for the public peace—their outrages are beyond all description."

With the above being said, why aren’t Later-Day Saints, including their leaders, making more public statements in support of immigrants? Why are Mormons’ complicit with letting many Republican leaders wage war on Dreamers and refugees, those fleeing disaster-torn countries or political unrest, and support political leaders who are persecuting the modern-day version of themselves?

From what I’ve seen on the news, at least here in Texas, the only religious opposition to the current political “America First” insistence on immigration reform comes from the Pope; but even the Pope’s comments are dismissed by hardline GOP comments stating the reason the Pope is concerned with immigration is because a majority of Catholics come from many poor Hispanic countries. All I can say is shame. Shame on our government leaders, and shame on Mormons and Christians that support them in this philosophy.

We, as human beings, should be concerned about the welfare of other human beings—this is what Christians have prided themselves on as they preach the bible story of the Good Samaritan or recite the Beatitudes; yet, so many citizens in our country have been swept up in this false belief that we need to be concerned only with ourselves, so we ignore the basic principals in the bible and twist it to a version where the Samaritan is the victim and the poor should be reviled. It is our job to care for others by sharing what we have—whether it’s our country, our food, or our money. It is only through compassion that we will be able to make America great again.

Playing HOUSE

It seems like throughout my adult I have had health conditions misdiagnosed.

It started when I was in my late teens and early 20's. My behavior started to change. I went on spending sprees, exhibited promiscuous, felt invincible and that the world was mine for the taking. This lasted several years until depression set in. I had a son from a stupid relationship with a guy I really didn't love and was not devoted to. THIS IS VERY IMPORTANT... that child turned out to be one of the best things in my life by giving me hope and the desire to change my behavior. I was hospitalized for thoughts of suicide, explained my complicated family life to the doctor, and was discharged the next day with 10k of hospital bills but had no diagnosis.

Eight years later, I was 29, the mania returned.This time the euphoria had become anger. Not the kind of anger that everyone feels from time to time, but a deep seeded loathing to lash out at the littlest annoyance. I was David Banner one minute and turned into the Hulk the next minute. I had been married to a wonderful man who loved and adopted my son. I knew there was something wrong and everyone else wasn't to blame, but didn't know what to do about it. This went on for nine or ten months before we sought help from a GYN because we assumed it was hormone related because my body had stopped menstruating regularly for the past several years. I was put on progesterone. The feelings went away, except for occasional outbursts, and then three years, we were blessed with the news that we were going to have a baby; until four years later.

I am sad, frustrated, and angry with the doctors I've had over the last 25 years. As a patient, it is so important to trust yourself and get a second opinion. Here is my history of being passive.

1990 - Vertigo, spots before my eyes. Thought nothing of it. Went away within a month.

1991 - Teeth pain. Had root canals. Multiple dentists said it was sinuses.

1992 - In Feb 92, I had my first sinus surgery. Did not stop face pain.

1997 - 3 car accident, I was driving a small truck in the middle. The seat broke, forcing my head through the back window shattering the glass.

1998 - Horrible headaches. Face pain, more dental work.

1999 - Tremors started in my hands and legs. Leg spasms blamed on pregnancy pressure on nerves and muscles. All lab tests started showing a RBC decrease (never mentioned by doctors until 2013 when I did a blood trial for Kaiser in December 2013).

2001 to 2006 - Tremors continued, I'd trip, lose my balance, I'd get confused, my legs itched like crazy at times. I discussed these with my GP. Blood tests showed signs of anemia (never discussed), I still had face pain. I was depressed to the point that in 2003, I checked my self into a mental hospital. There I was diagnosed at Bi-polar and put on Lamictal (anti-convulsant and mood stabilizer).

2006 - Between 1999 and October 2006, face pain continued. More dental work. Sinuses blamed, so a doctor performed a second surgery. In December of that year, I went back to say I think I was leaking brain fluid, but the doctor dismissed me and said it was because I used a Neilmed Sinus Flush and to take it easy and bed rest for a few days.

2007 - Leaking went on and off, sinuses were blamed. In Feb, my dentist said the face pain was probably Trigeminal Neuralgia and advised me to see an neurologist. I was diagnosed in 2007 with TN in Aug. Later that year, I began experiencing a shocking type of pain in my head. It would start in the back of my head and, like a dimmer light switch, would increase and then decrease in intensity. The neurologist gave me shots in the back of my head and I haven't experienced this type of pain since.

2007 - Weird problems on and off. Anything mood related was blamed on bipolar. I believed this was MS and told my family of my concerns. I was dismissed by doctors. Face pain blamed on TN. Sent for MRI of brain and it was clear, so doctors treated me as if I was a hypochondriac. Nasal drip continued from the right side of my nose. Blamed on allergies. This continued on and off for years. I developed a cough and get a sore throats and ear infections, which the GP would give me antibiotics.

2008 - Wanted to lose weight because of aching, breathing, tired symptoms. Went through Kaiser's pre-weight loss surgery classes for the gastric sleeve. Lost 25 lbs. dieting. They couldn't do the surgery because of a sever vitamin D deficiency. On high dose vitamin D. RDB still in 8s but not discussed with me.

2009 - Sent to an allergy specialist. I explained the dripping, which was dismissed. Coughing and out of breath blamed on asthma.   Given a breathing machine. Didn't really help. Blamed on obesity (which is true, I am fat), blood tests now showed RBC in mid-8s (never discussed). Given antibiotics every 6 months. Other symptoms body soreness, hands not working right, trip, balance issue, dizziness, tiredness, heaviness, and other things I can't remember.

2011 - Going to doctor about every 4 months. Leaking from right side almost continuous. Told allergist I thought is was brain juice. Heart started racing. Did EKG that read normal.

2012 - Losing about a teaspoon of fluid through my nose every half-hour. Allergist sent me to a specialist in June who confirmed it was CFS. Sent me to another specialist in Anaheim. In July, the specialist did a camera scope up my nose and detected a hole the size of the tip my pinky finger in which my brain had fell into. Surgery was scheduled for October. Repaired the leak. Did blood tests (still no discussion of anemia). During surgery, the doctors could not do an epidural because there was no CFS in my spine. I believe that because I had been taking Lamictal for bipolar I did not experience seizures, Tylenol for pain (about 2000 - 3000 mg per day), and antibiotics every 4 to 6 months for what doctors had said was a sinus infection probably protected me from getting meningitis or other brain infection.

2013 - Felt okay, tired, tremors continued, other issues like horrible right knee pain, but basically compared to how I felt before I was okay. Sent to orthopedic doctor. Diagnosed with osteoarthritis, but Kaiser wouldn't do knee surgery because I wasn't over 50; he gave me a knee brace. Had lab test for Kaiser study where they noted to doctor that my anemia was in the low 8s and to let me know asap to come in for an appointment. On December 29th, the Kaiser GP left a panic message for me to come in to discuss blood work. I explained we'd moved to Texas and I would no longer have Kaiser.

2014 - Found a good TX doctor. Sent me to specialist for Upper and Lower GI Scope. Found some hemorrhoids and stomach polyps, but nothing that explained tiredness and other symptoms. Tremors and hand pain blamed on carpel tunnel. Had knee surgery in December 2014 (best thing I ever did). My internist (GP) monitored my blood every 6 months. Anemia continued. Took iron pills, but the made me sick. Was told breathing problems was weight and I didn't have asthma.

2015 - Lost about 30 lbs. Started feeling better. Almost all symptoms of dizziness, body soreness, tiredness, etc. gone, except anemia and tremors.

2016 - Had bladder problems with leaking. I believed it was bladder prolapse. Referred to  obgyn. Doctor was rude and didn't believe me about prolapse, blamed on weight. Anemia got worse. I refused to go back to that OB office. Tiredness, soreness continued. Had another GP in my doctors office do a vaginal exam and was told I did have some prolapse and to do kegel exercises and use an over-the-counter bladder sling.

2017 - Anemia got worse. Blamed worsening symptoms on anemia. Went back to OB office and got another doctor, and was scheduled for a hysterectomy in May. Symptoms of feet and hand pain, balance issues, etc. continued, but anemia gone. Went to pain doctor who said maybe feet braces. I explained all my symptoms and asked the doctors (both pain and my GP) if it could me Marie-Charcot-Tooth because I have high arches and it is a neuro problem. I was dismissed as plantar fasciitis and hand numbness as carpel tunnel. The feet braces does nothing for the pain in my feet.

This November, I ignored the diagnosis because I knew it wasn't carpel tunnel. All my symptoms matched a neuro problem. I scheduled an appt with a neurologist who sent me for an MRI. I will post the images of the Nov. 2017 mri alongside the images from 2007 and 2014.

All I want to know is what the hell is wrong with me. It has been 25 years of playing a character actor on the Fox series HOUSE. My family is sick of me always complaining and it makes me wonder at what point does everyone just tune me out? It seems like doctors already have.