Wellness Journal | Stress & Asking For Help

I started my morning with Imagine Dragon's "Radioactive" blaring on my iPhone. I'm zoning out. I do this when I need to think or when I need to feel something other than I'm feeling. It's my therapy sans crappy ass people (also known as mental health professionals) who think they know what's best for you. People like that can get me in trouble. Hell, that's exactly why I'm in the trouble I'm in now.

We saw the movement specialist doctor yesterday and I'm extremely saddened by the appointment. My boyfriend saw the appointment as positive and I just didn't which just begs the question, "How depressed am I?"

At this point, "Superman" by Lazio Bane comes on my iPod. Remember the show Scrubs? Then you'll know exactly what I mean. It's the shuffle on my iTunes and it's the universe reminding me that I'm not alone. I have a wonderful support system. I have friends and I'm in love with a wonderful man.

I tend to think that I'm alone in this life and that I can't depend on anyone but myself which creates resentments that lead to more anxiety. It's time to let go and let the universe do for me. It's time to implore a little faith. Faith in something other than myself. I'm letting go. It's not a choice anymore.

The doctor told me that there's little I can do except take psychiatric meds. I agreed like a good little patient when I was there, but I have to say that I felt so defeated in that room. I felt like this was it for me. I thought that it was just what the universe was bringing my way then I should listen. It's good to listen, to be mindful of the moment. I get that. But when tears flow there's a reason for that, too. At that point the universe is giving me a choice.

Sometimes it will take me a full day to figure out what I need to do. Sometimes it's only minutes. That's best for me because if it's more than a few hours I start getting really sad. I'm sad because I start feeling like there's not another solution. It takes me a while to process my own feelings, but when I get to that point I have to go into my cocoon. I need to be alone. I wanted to be alone yesterday on the hour long ride home from picking up a friend at the airport after my appointment. For hours all I could think about was that I was in a pickle. By the second hour I was freaking out a little bit. I turned on my iPod and tried to zone out and stop thinking about it, but my brain wouldn't let me be.

We finally got home and I thought I would be able to relax, but we realized we were out of marijuana (which is a natural medical necessity for my condition, google it) and then had to go take care of that. I tried to be socialable, but after a while even my laugh sounded fake to me. I had lost the ability to feel joy.

Then everything started annoying the fuck out of me. I got angry. I was angry because I was in this fucking situation in the first place and then everything else annoyed the fuck out of me, too. In one instant I was fucking angry and in the next I was very, very sad.

How had this happened to me AGAIN? What did I ever do to deserve this? I have lived my life as a pretty good person. I'm not perfect. I know I come off like I don't give a shit about people, but that's a defense mechanism because I care more about everyone and everything than probably anyone you would know. I care so goddamn much that it literally hurts me.

I worry constantly about everyone and everything. Everything from I hope that my love's sister is feeling no pain today to wishing that my girls can be as happy as possible even if I'm not with them to feeling pain because I can't be there to hoping they understand someday why I'm doing this. Okay, well, I do think about everyone. Just today because I'm still a little sad I'm wallowing a bit. But how can I not?

Stress is making this disorder worse. I got that from the lady doctor. I got that loud and fucking clear.

When I get like this I have little tricks I learned along my mental healthcare way. This is the way that I cured myself when I was misdiagnosed with Bipolar Disorder and all those pills had poisoned my mind: I listened to a shit load of inspirational music. I have always loaded my music onto my iPod, picked songs and hit shuffle so it would randomly select music in my playlist. I have so many different kinds of music. Everything from Britney Spears to Prince to Enya and everything in-between. So my feeling is that whatever message the universe wants me to hear is the one I'm going to experience this morning.

I also donned a heavy winter coat (at least for Texas) and lay down on the grass and looked up at the dark morning sky. It was quietly beautiful. The sky was a kind of cobalt hue that made me gasp because it was so breathtaking. The moon was a sliver of a crescent and the little dipper was right where I like to see it. It seriously grounded me. I felt rejuvenated. I slowly started letting go of my fears.

I can do this. I can do this without those drugs. I can. I have to be dedicated, but that's where I feel stuck. I need some help. I need help. I hate to even type that. I don't ever like to ask for help. I always want to be a superwoman and do everything myself, but I can't do that anymore. Those ways do not work and they need to be reevaluated.

It's time to remember that there is no box. I'm not thinking outside the box anymore. I'm remembering that that notion is bullshit. There's no fucking box. My mind refuses to be constrained by norms. It's powerful and it's time to use it. It's time to utilize every fucking tissue in my brain. I have to get it fired up. I have to get it fired up. I have to get it fired up…or my soul will die.

So that's where the other part of my plan comes in. I have to be my own holistic coach. I'm eating a clean organic diet. Now I need to add in more. I need to address my mental health with meditation, nature, and living in the moment. I need to ask my friends and family to gently remind me of it so that when I get tired they will lift me up.

I implore the universe...who's going to remind me that I'm not superwoman?

Wellness Journal | Migraines and Vertigo

My disorder is progressing and that's scary shit.

This morning I awoke and my right hand hurt. When I put that together with the fact that my hand now has an occasional tremor it worries me. I knew it was going into that hand before I saw the doctor last. I just wanted to know if I was making it up in my head before I said anything.

The tremors in my whole body started last week, too. When I relax my body my torso and both arms shudder with uncontrollable spasms.

It worries me for a few reasons. ONE: I don't know how much longer I can work. TWO: How much worse can this get?

………………...

I just got out of the shower. I had to sit down in the shower because I had another dizzy spell. I wonder why it does that in the shower? That's the third time it's happened in there. Only had it happen once outside of the shower.

I've had a migraine for a few days now. It's not going away. Light bothers me.

I know it seems like I'm complaining. And I am. But I'm also documenting this stuff.

……………………

This morning my migraine got so bad that I felt so light headed and dizzy every time I stood that I ended up on the bathroom floor. I was supposed to go into work at 11am. I napped for three hours. It's after 3pm now and I still have the migraine. Dizziness seems to be gone. Just took two Advil Migraines. Hope they work.

…………………….

It's midnight. Still have a headache and had a bit of dizziness this evening after orgasming (orgasms help with pain control).

I'm going to bed. Tomorrow will be a better day. If I think it, then it will be so.

Night, all.

Progress | The Cause of My Tardive Dyskinesia

Please note that this was written in November 2013. In August 2014 I discovered that my estranged sister was experiencing the same symptoms as me. The neurologist that diagnosed me doesn't believe that I have tardive dyskinesia any longer. On October 1, 2014 I saw a different neurologist that diagnosed me with Psychogenic Movement Disorder. I do not agree with this diagnosis due to the fact that my estranged sister and mother have similar symptoms.

In 2006, I was mis-diagnosed with Bipolar Disorder which started me on the road of a million teeny, tiny multicolored pills. Anti-depressants, antipsychotics, benzos, and sleeping pills were just a few meds that I took. Every color of the rainbow was represented. I was told by all my doctors that this was the road to wellness. They fucking lied.

I took those psychiatric drugs for four years. Three of those years I was on antipsychotics. A question that I hear often from doctors is how I can be so sure that I don't have bipolar disorder. I laugh humorlessly and then answer, "Because I'm sane without the pills." In my head I add, "Duh. What a dumb fuck this doctor is!" Every medical problem shouldn't be answered with a pill. Pharmaceuticals are plant derivatives, but they're mixed with chemicals. Medication is not an exact science. I can't tell you how many times doctors have told me that, "What works for one patient may not work for another." It makes me shake my head when I hear it. How did I ever let myself become a guinea pig?

The antipsychotics that the psychiatric nurse gave me for my misdiagnosed bipolar caused my brain disorder that's called tardive dyskinesia and it has continued to worsen ever since. I finally got my official diagnosis just earlier this month after having this disorder for three years. It actually felt like a fucking relief to hear it. There were too many goddamn doctors that told me this shit was all in my head. I knew they were full of the shit they were referring to. I wasn't crazy. I was never as crazy as the pills made me. Why couldn't those doctors just admit that they didn't know what it was? It's not common. I get that it can be difficult to diagnose. I've seen a dozen doctors and only ONE doctor said he didn't have a clue, but he sent me to another doctor who added another piece to the puzzle. I had just about given up when I met Dr. Wendee, a chiropractor in Austin. She was convinced that it was the antipsychotics that had done this to me. I agreed, but I drug my feet in going to see the neurologist that she suggested. Most doctors are idiots.

The neurologist gave me a diagnosis and then directed me to another neurological movement disorder specialist. She gave me my official diagnosis of Tardive Dyskinesia. I didn't know whether to laugh or cry when she gave me the diagnosis that I've suspected all along. What will become of me now? What is there left to do medically? If I don't take the pills or let them inject botox into my neck then I will live the rest of my life in pain. Tardive Dyskinesia is not a good diagnosis, but it's mine nonetheless. I may own it, but I'm still a long way from acceptance.

My disorder has progressed more than Dr. Varga likes. She said that most people who have this disorder only have it for a little while. Great. Does this mean I should prepare to become another guinea pig? She wants me to take a medication that will make it almost impossible for me to live without drowsiness and other side effects.  I would be lying if I said that I wasn't still considering it. I don't want to take more pharmaceuticals, but I don't want to be dependent on others the rest of my life either.

To be honest, I feel a little lost on what to do. I can't live with this pain, can I? Can I live with this daily pain? It's more than that. I have variations of pain levels throughout the day, but I am always in pain. Always. What I wouldn't give to turn back the clock and tell my past self not to take the antipsychotics then I definitely would, but that's not something realistic that will help me. I'm not sure if there are any real solutions here. The only two solution I've thought of are to learn to control my mind and investigate cannabis oil further. Perhaps it's time to truly consider moving to Colorado where marijuana is legal. Not only does it help with pain control, it could be the one thing that heals me.

One thing that I know for sure is that I have to live without stress every single day. Stress aggravates my disorder. I have to learn not to give into my fears, the inevitable depression that comes with illness, and self doubt. It's a tall order, but I need to learn how to do all of the above. I need to live one moment at a time and not worry so much about the future. That's a very tall order, but a necessity. I have too many fears due to my diagnosis, but I can't let them rule my life.

Wellness Journal | A Night of Pain

"Be patient with yourself. Acceptance and faith are matters of daily practice. Just like with the treatment for the physical illness, overcoming the emotional impact takes time, rest, and a regimen of self-care." [Read More...]

It's 1:53 a.m. and my arm is screaming. It's been screaming since 11:00 p.m. I think I managed to sleep two hours and I think that will have to suffice. My arm is screaming. There will be no more sleep tonight.

Surprisingly, typing helps. I'm not sure why. I've tried everything else tonight. I've smoked so much marijuana. This last stuff we just got is not so good, so I have to manage my pain in other ways. I tried a hot shower. I've tried orgasms. Kava kava. I've cried hysterically. I need relief. Fingers are burning and I believe I must quit typing now.

So, I just did some more self love and I feel better. I just can't lie down. Every time I do it hurts worse. I am fully aware that I'm stressing myself out even more, so I took more Kava Kava, drinking a beer, and listening to slow jams.

I'm trying to stay grounded, but that can be difficult. I need the earth under my feet. Silly me, I ran out of running pants. Wanted a run this morning, but settled for some strengthening exercises that probably put me in this pain.

The strengthening exercises were using a 15 lb stretch rubber tube: Crunches, Arms, and Back.

Torso Track: long length and mid length. 

Small ball hand exercise: one repetition.

Tonight when I was in severe pain:

I took a hot shower to help get the muscles and cramps worked out.
Had a few orgasms.
I smoked around 4 bowls of marijuana.
Took a lot of Kava Kava.
Remembered to take my Vitamin E.
Drank a beer.
Looked at Facebook.
Typed a blog post. 

Fingers screaming now. Better than neck and shoulder to fingertips.

YES! I believe that relief is in sight and that's a truly beautiful thing!!

The Secret | Anything is Possible

I know I'm going to have a bad morning when I smoke three bowls and I'm still in pain.

This morning I've decided to do some typing and hope that the exercise will help because something has to work right the fuck now.

It's not easy to be in pain. I feel extremely vulnerable all the time. It eats at your self esteem. All I can think about is that I wish the pain would end and that I'm not strong enough to fight it.

I think I'm in mourning AGAIN. I vowed I would never be here again. I feel myself sliding toward the sadness. I know I must resist. I'm doing my best.

I haven't been running in a while. The last time I went running I came back home and my arm hurt for three days straight. What the fuck?  think the nerves in my arm don't like it, so if I'm in any pain I don't want to go running. I'd go running in mild pain, but anything else is not good. I look at the sky when I run. I remember why it's wonderful to be alive. I'm surrounded by trees. I smell the air. I commune with my inner goddess.

Being Kind to Myself

But there are days when I cannot run. Days when the pain takes over me. Days when the pain is too much to bear. On those days I comfort myself and I try to be kind to myself. Negative thoughts are still there. Mostly I blame myself for taking the antipsychotics that got me in the mess in the first place. I'm not being very kind when I think those thoughts, but I realize they're not and that's half the battle.

Today when I was massaging my hand I tenderly held it for a minute. I thought to my hand, "I love you regardless of how much this hurts, no matter how much this burns, no matter how much you embarrass me. I still love you and I cherish you."

I know it sounds corny, but it made me smile. I have to love myself for me to survive this shit. This may  get me down now and again, but I'm going to beat this disorder with the power of my mind and the power of positivity. And I will.

Because I BELIEVE.

I'm going to remember that it's the power of the mind and living in the moment that will get me through this. When I think that I can't go any further or I'm about to start screaming I will remember that this is going to get better. All I have to do is remember what it was like to have a healthy mind. This is my strategy. You know--along with all the other stuff I'm making up to get through one moment at a time. Thoughts have power. I'd rather explore this angle and make it through this with my head held high, dry eyes, and an incredible confidence that anything is possible if you just believe.

Research | Tardive Dyskinesia

Prognosis: "there is no known cure or treatment option to improve symptoms. In fact, many physicians will simply opt to change the patient's medications or eliminate medication use altogether although, ultimately, symptoms of tardive dyskinesia may not improve". [Source]

What Tardive Dyskinesia is:
Antispychotics cause the disorder which is mainly characterized by involuntary movements more often in the face and hands.

"They are often mistaken for psychiatric disturbances and patients may be shunned. During episodes of dystonia, opposing muscles that should relax contract. This can result in a limb that appears distorted. One of the most common manifestations is an ankle that twists and won't bear weight. In some cases, muscle groups that should be uninvolved in the activity being attempted will get involved. The result can be shoulders that swing violently during walking or an entire arm and shoulder that cramp and contort while the hand is holding a pen. In some instances, the opposing hand/arm/shoulder may also contort in a perverse sympathy." [Source]

Tardive dystonia is a syndrome of sustained muscle contractions, frequently causing either (a) twitching and repetitive movements, or (b) abnormal postures (14). Blepharospasm, grimacing, torticollis, retrocollis, and the Pisa syndrome are characteristic movements of tardive dystonia. [The Treatment of Tardive Dyskinesia] 

Antipsychotics work by blocking dopamine receptors along three pathways, and over the long-term, these pathways become increasingly dysfunctional (at least in a high percentage of patients.) The dysfunction in the basal ganglia leads to tardive dyskinesia. The dysfunction in the limbic system and the frontal lobes leads to tardive psychosis and tardive dementia.

So, the antipsychotics blocked my dopamine and as a result, I now have TOO little dopamine: 

Dopamine is defined as a catecholamine. This means that it is a hormone functioning as a neurotransmitter. The body's nervous system is a sophisticated communication network with the brain sending signals to the various systems through electrochemical impulses. These signals travel through the nerves to the terminals, where they interface with receptors on the surface of cells. In order for those signals to pass from the nerve endings, or synapses, to the cell receptors, dopamine — in very specific amounts — must be present. Dopamine also affects emotional state, perceptions, behavior and cognitive thinking. 

This paper proposes that the neuropsychiatric symptoms of tardive dyskinesia, akathisia and pseudoparkinsonian tremor are modulated by a noradrenergic pathway that projects from the locus coeruleus to the linbic system. -AND- Noradrenergic modulation of the limbic system by way of the locus coeruleus accounts for a number of clinical observations, such as the worsening of tardive dyskinesia by stress, the greater risk for tardive dyskinesia in patients with affective disorder, the time-of-onset of tardive dyskinesia, and the coexistence of tardive dyskinesia and pseudoparkinsonism. [source]

The influence of stress on dopamine receptors: 

Besides the qualitative approach to coping with stress, what bodily mechanisms are responsible for dealing with anxiety? The nervous system is almost solely credited with this task. The complex interaction system between billions of individual neurons facilitates large number of behaviors that result due to inputs originating inside and outside the organism. Spaces between neighboring neurons are called synapses, and one way in which they communicate is by sending chemical signals called neurotransmitters across the presynaptic membrane to the postsynaptic membrane. Years of nervous system research have determined that stress activates the neurotransmitter, dopamine. [source]

Although some alternatives and dopamine agonists (drugs that help to restore normal levels of dopamine) have been of some use in treating tardive dyskinesia, the best treatment found thus far is prevention. [source]

Holistic Solutions for Tardive Dyskinesia:

1.  1,600 IU of vitamin E [Source]
2. Vitamin B6 [source]
3. Ginko biloba, 240 mg/day [source]
4. Tarvil Amino Acids [source]
5. Cannabis Oil {[One Study Only for Tardive Dyskinesia] [The afore mentioned study in PubMed] [Cannabis and cannabanoids] [Dr. Sanjay Gupta and Tardive Dyskinesia on Medical Efficacy List] [Cannabis Oil, a Natural Cancer Cure, Natural News] 
1. CB₁ receptors are found primarily in the brain, to be specific in the basal ganglia and in the limbic system, including the hippocampus. [source]
2. Cannabinoid receptors are activated by three major groups ofligands, endocannabinoids (produced by the mammalian body), plant cannabinoids (such as THC, produced by the cannabis plant) and synthetic cannabinoids (suchcaas HU-210). [source]
3. The CB₁ receptor is expressed mainly in the brain (central nervous system or "CNS"), but also in the lungs, liver and kidneys. [Source]
4. U.S. National Library of Medicine's take on CBs. [source]
5. Cannabinoids and Dopamine receptors [source]
6. However, in the reward circuit, just as in the case of other drugs, more dopamine is released. As with opiates, this paradoxical increase is explained by the fact that the dopaminergic neurons in this circuit do not have CB1 receptors, but are normally inhibited by GABAergic neurons that do have them. The cannabis removes this inhibition by the GABA neurons and hence activates the dopamine neurons. [source]
7. This is the ULTIMATE research that advocates for the positive use of cannabis in Tardive dyskinesia patients!

Doctor Notes | Pretty Little Poison Pills

I paced incessantly and then sat down. Then I got it up and did it over and over until the assistant came in and started asking me questions.

He asked me why I was there. I explained the pain that went from my fingertips and all the way up my left arm to my neck. Then I told him that I thought this had been caused by my many years of taking antipsychotics. 

I waited a minute for his response all the while thinking…"Doctors Number Two and Number Seven didn't believe that these meds could still be in my system after all this time…Wonder if this one will be the same?" Somehow I knew in my gut that wouldn't be the case this time. 

He actually asked me about my diet. What?! I know. I was flabbergasted. I explained that my diet had done a 180 degree turn around and I was juicing and eating clean. He said that was a good start. 

"It takes most people years to get them out of their system."

My inner voice said, "Oh, shit…it's time to do the 30 day detox. There goes my beer." at the same time as, "FUCK."

I told him about my EMG results. They didn't have them even though I had them sent. He went to look for them and I was back to my pacing ritual, but not for long. 

The doctor was all in white. It was very odd. Even her shoes were white. She was wearing a white short sleeved coat. Her hair was dyed jet black, but it was pretty. She was pretty, but more importantly she was nice. I did like her, but it will take more than me just liking the doctor to inject those teeny, tiny pretty poison pills of the rainbow into my body. No more of that for me or my cleaner body. That's what got me into this fucking mess in the first place.

It made me recall a conversation over the phone with my psychiatric nurse with me asking why my medication needed to be changed yet again.

"Why do I need an antipsychotic again? I haven't seen anything since the postpartum psychosis I experienced." 

"It will help regulate your moods. You're sinking into depression again, aren't you?" 

I felt shamed. "Yes," I whispered.

At the end of my examination the doctor asked me how this has progressed to what it is now. 

"It started in 2009. I remember that when my father was in the hospital that my hand started moving at night. I also clenched his hand too hard when I held it with that hand. It was uncontrollable, but I didn't tell the doctor. She did take me off one antipsychotic when she noticed a weird mouth movement at one of my appointments, but she just put me on a different one the very next day." My inner self shook her fist at herself. What the fuck had I been thinking? I hadn't been thinking. I had been fucking drugged up like a motherfucker.

"It is clear that your tardive dyskinesia is progressing. Let's get your cervical spine MRI first and then we should revisit the conversation about botox in your neck and the medication," she said and the visit was over.

It was over for her, but for me the journey to wellness will be a long one. It's progressing? What the fuck? How bad will this get? Can it get worse? Oh, god.

I'm not one to give up so easily. I can and will eliminate these toxins with my body.  I did some research on the internet about everything I found that seemed relevant. I found some holistic remedies. More importantly, the research led me to a plan of action. And a plan of action is enough to get me started, plus it will reel in my depressive qualities. 

One thing is for sure and I will not budge. No more fucking pretty little pills of poison for me. 

Doctor Notes | Guinea Pig

I've been doing some research on TETRABENAZINE. The doctor recommended this medication for my tardive dyskinesia. Don't get me started on the why. The cause. The reason I'm suffering. I can sum it up in one word. PSYCHIATRY.

Doctors are always wanting to experiment on my body. Wtf is that?!!

The medicine is not FDA approved. I have to go to a special "pharmacy" to get it which means it's probably expensive as fuck. OH. Here's the kicker: it is government subsidized because they don't want to do trials on the medication.

Of course, I wonder if this will work for me. If it would ease my pain, my embarrassment, etc, etc. Then I wonder...is this so bad? Could I live like this if I had to?

FUCK THE SYSTEM. I'M NOT GIVING UP.

.............................................................................


I am not going to be sucked into the pharmaceutical run around yet again in my life. If this doesn't work I'm sure the doctor would offer an alternative. Doctors are just drug pushers. Plain and Simple.

So, I'm starting this blog. I'm going to document everything that happens to me.

DAY ONE

Yesterday, I saw Dr. Varga in Austin, TX. She recommended the aforementioned medication. She wrote the name on a piece of paper at my request. It was good to see a doctor not hesitate to do that, but I wonder if they're trained to be good little salesmen in medical school at the same time.

The examination consisted of asking questions.

"What hurts?" The european lady doctor asks.

"My left arm from my fingertips to my shoulder and neck."

"Are you doing that movement?"

"No, ma'am I can't control that." I sink from sitting up straight to a shameful shrug.

"Do you just have movement in your arm?"

"No, ma'am." I gulp out some courage. "It's in my neck, too."

"Turn your neck to the right. Do you feel any pain? How about the left?"

"Yes, some in my left."

She had me walk up and down a hall. Then asked me what my arm was like when I typed.

"It's actually pretty fine."

"Let's see."

A keyboard was provided for me and I typed over and over, "It's a beautiful day" until I was asked to stop. Yes, I typed quickly. I do everything quickly. But while they were distracting me they noticed some sort of foot movement that I should have asked to see. Did I mention they videotaped it?

Tardive dyskinesia. That's my diagnosis from this doctor. The last one said it was focal dystonia. Do these doctors even have a clue?

To be fair, Tardive Dyskinesia is a relatively new movement disorder.  There's only like 200,000 patients known with this in the US and the cause is that anti-psychotics are being given to patients for more than the three recommended months that the pharmaceutical companies suggest on the package.

I took three to four different kinds of antipsychotics and I was on them for SIX FUCKING YEARS. I feel a lawsuit brewing. A big one because I'm pissed as hell.

Fuck the doctors. Fuck the pharmaceutical companies. Fuck the entire psychiatry medical field. We are merely guinea pigs.

They don't know anything. This is not the kind of science I was taught to love. This is little men and women experimenting on human beings. The medication that I was once again asked to injest is in the Benzo family. It's a derivative. It's a fucking joke because it's plant based, but it's spliced with a heavy chemical. It's yet another type of psychiatric drug. ANOTHER ONE. They all promise to alleviate the previous symptom and then they give you a million other ailments to fuck your body up even more.

FUCK THAT. This is my fucking body. MINE. I'm not giving it up to science. I will not be a lab rat or a guinea pig or a rabbit or any other fucking thing.

Why can't we just all respect life? Why can't we just let it all be? Why do we always have to fix everything?? Fix NOTHING.

We are meant to be better than all this bullshit. We are meant to evolve. We need to be better than a drug addicted society. We need enlightenment.

Let us all go forth and be guinea pigs no longer.