Doctor Notes | Eastern Medicine Kind of Girl

To prepare for my appointment with Dr. Georgette Varga, a movement specialist and neurologist in Austin, Texas, I wrote the following note and emailed it to her a couple of days ahead of my appointment.

Current Symptoms

Memory problems
 Weakness in both arms, L worse concentration
 Afraid of falling
 Anxiety
 Dizzy spells: happen when sitting/standing up
 Weight change: lost 20 pounds since November
 Vision changes
 Fatigue
Incontinence
 Pain level consistently between six and eight out of 10
Leg movements when going to sleep: slow movement has been happening since birth
Rocking since birth
Tremors
 Chronic Constipation
 Cramping in left and right arms, both shoulders and neck
Pain in left arm/chest
Feel like difficult to stop, difficult to start. Ex: projects

Things to Note:
Grandfather was a Korean vet who had diabetes, heart attacks, strokes, prostate cancer and Alzheimer's.
Father died of mass tumor in his body that caused surgeons to remove pancreas and part of his stomach. Died of septic shock and stroke.
 I was born in North Dakota where the Parkinson's test rate is higher than that of the rest of the country. 2, 4– D was sprayed on the field near the Minot Air Force Base where I was born.
 I've had symptoms since 2009. I've been off antipsychotics since 2011.
I am still progressing.

Research I'm sharing:
North Dakota Parkinson’s Death Rate :http://www.worldlifeexpectancy.com/usa/north-dakota-parkinsons-diseaseNorth Dakota County Map: http://www.ezilon.com/maps/images/usa/north-dakota-county-map.gifNutrients, Suspended Sediment, and Pesticides in Water of of the Red River of the North Basin, Minnesota and North Dakota, 1990-2004: http://pubs.usgs.gov/sir/2007/5065/Center for Food Safety’s Parkinson’s Disease and 2, 4-D: A Summary of the Evidence, May 2013-14: http://dow-watch.org/cms/assets/uploads/2014/01/24-D-and-Parkinsons-Disease-Summary-FINAL1.pdfPesticides Trigger Parkinson’s Disease: http://www.beyondpesticides.org/gateway/health%20effects/parkinson's%20cited.pdf
Agent Orange Use During the Vietnam War: http://covvha.net/vietnam-war-agent-orange/Veterans Exposed to Agent Orange in Vietnam & Korea: http://www.benefits.va.gov/compensation/claims-postservice-agent_orange.asp
Veterans’ Diseases Associated with Agent Orange: http://www.publichealth.va.gov/PUBLICHEALTH/exposures/agentorange/conditions/index.aspSymptom-relieving and neuroprotective effects of the phytocannabinoid THCV in animal models of Parkinson’s Disease: http://www.publichealth.va.gov/PUBLICHEALTH/exposures/agentorange/conditions/index.asp

We ran late to the appointment. It was not my intention to be late, but the universe had other plans. I'm trying to go with the flow, but I raced up the walk way because I hate to be late. 

That morning as I was dressing I had to remember that I was dressing not just for my doctor's appointment, but for a day in Austin which included dinner with friends later. I gazed lovingly at my heels and I felt disappointment because I knew that with my dizzy and falling spells that I should not be wearing heels. I expressed my woe to my spouse and he told me that he would be next to me at all times, not to worry. I smiled at him, delighted he understood. Giving up my heels would be a last ditch effort. I wasn't giving up just yet!

It was my high wedges that the doctor's assistant remarked upon when he saw me. I smiled, said nothing. Then the doctor came in. She asked me how I was doing and I blurted out that I was progressing. It had gotten worse. 

She asked about my arm and if I had changed my mind into having carpal tunnel surgery. I said nothing as she rambled on about how I could lose the use of my arm. 

I piped up in anger, "What difference does it make if it ruins the right arm? We have to know the cause. We can't just go and do more damage to the body by doing surgery."

She pursed her lips. I could see that I was frustrating her. I had become a belligerent patient. Oh my. Was I in for it!

She would not look at my research and insisted that I did not have Parkinson's. She wouldn't examine me either to notice my progression. I persisted in telling her what I had learned in my research about pesticides and Parkinson's. I held up my hand to get her to listen to me when she tried to bowl me over. I told her that my estranged sister had just contacted me and told me that she has the very same symptoms. The very same. From the cramping and tremors, to the storms, and to the severe cognitive dysfunction when it came to memory.

She responded that I don't have tardive dyskinesia and I don't have Parkinson's. When I persisted in asking her what I did have, she responded, "You should get a second opinion. I don't know."

Aha! We got to the root of the problem, didn't we? She doesn't know. No doctor knows. There are too many diseases that are unknown. Until medical science has advanced enough to readily be able to diagnose what I have I will kindly stay away from all western medicine. I'm an eastern medicine kind of girl, I guess.

Wellness Journal | Symptoms, Pain Levels and Photos

My hand looks relatively normal lately even though my pain level was kind of off the charts... Extremely difficult time sleeping... I'm hoping these journals will detail my progress so that patients can benefit from my experiences.

July 30, 2014

Today is Wednesday.

Pain Level:
7 out of 10 (10 = worst).

Symptoms: 

Morning: Burning in my fingers alleviated only by pressing my left middle and ring fingers into the mattress. High tone in relaxed state of left wrist. Right shoulder spasming, pain radiating down into my elbow. Cutting an onion hurts my right bicep and elbow.

Evening: it's 10:23pm. I'm settling down for the night. I find that my left hand is cramping and moving a lot. So is my shoulder. The best thing I can do to help is to put my hand under something so that the movements don't create further cramping. I'm not sure if that's even the right thing to do. Sometimes I wonder if I should just let it do it's thing and not worry so goddamned much if people will think I'm a freak.

Progression notes:
I've noticed that I don't wake up screaming in pain anymore since I broke in my IKEA pillow with dents for my neck. I don't think I've had any episodes of shooting pain and painful numbing sensation except once (after a trip an hour away in Austin) in the last 30 days. This does not mean, however, that my illness has stopped progressing. I do believe that my Illness is getting worse because my trembling is getting worse, not to mention having trouble remembering things and feeling like I'm going to faint.

Pic of left hand at 10:12am:

Pic of right hand:

What's going on in my life today: 

I worried half my day about the Central Texas NORML Alliance meeting today, spent way too much time on FB. More than half the shit I saw was negative. I was already feeling overwhelmed. I need to not look at it so much anymore. It's unimportant compared to my health.

Mental: 
Very scared to make a noticable mental ass of myself. I think I'm going to show my cognitive dysfunction by not being able to finish a thought, but although I found myself sost forgetting I didn't. Would it be really horrible if I did? I'm not sure. I do know that when it dies happen that I'm going to find a way to deal with it. Those that love me wouldn't fault me for it.

Happiness Level: 
I'm very happy with Bill, but I'm unhappy with the plan to move to Colorado. I'm going to miss so many moments in my girls' lives. I don't want them to think that they're not important to me. And it makes me cry every single time I think about it.

Stress Level: 
6 out of 10. (1 being no stress and 10 being the most.)

Bedtime and Sleep issues: 
I can't get my body to rest. I'm tired but too stressed to sleep. My hand is tired but won't rest either. Looks like my shoulder and neck are going to keep the hand company in Painsville tonight.

Marijuana consumption: 
Sporadic smoking. 3-4 bong hits all day. I could use more, but we're trying to conserve.

Private life and/or Sex: Bill and I are happy. No sex today bc Bill didn't feel good this morning and I woke in pain. Not screaming pain, but pain nonetheless.

Tomorrow's plans: 
Sleep and Watch Movies. Limit FB to two hours total for all day.

Notice my left hand at tonight's meeting. I'm so mortified that was caught on camera.

August 1, 2014

Today is Friday.

Pain Level: 
8.5 out of 10. 10 being the worst.

Symptoms: 
Awoke in pain. Smoked Cat Piss (a sativa) and determined it did not ease my cramping so I've decided that I'm going to stick to Indicas. I smoked a second bowl of Berry White and feel so much better even after four hours later. Dizzy spell.

Progression notes: 
Same pattern of pain starting in my left fingertips, to wrist, to elbow, to arm socket to shoulder to neck then moves to right fingertips, to wrist, to elbow, to arm socket to shoulder to neck. This process can take days before everything relaxes from the cramping. I call this a 'Storm'.

Pic of left hand: 9:10am: 

Pic of right hand: 9:10am:

What's going on in my life today:

Today I found out that cannabis oil will not regenerate my dead brain cells, but it will prevent further damage. I was upset, but worked through it. Here’s what I posted on FB about it:

"I learned some very disheartening news today in my research about Parkinson's and cannabis oil. According to what I read cannabis oil does not reverse the damage done to the brain cells. Cannabis does not cure it like it can cure cancer. It seems ludicrous to think anything can cure me at this point. I've lost my positivity and I'm not sure when I'm getting it back.

I saw a photo of me at the CENTEX NORML Alliance meeting where my hand was obviously twisted and cramped. That I no longer have control over it in public is humiliating.That I'm getting worse instead of better and my doctor has no clue how to help me because she's not allowed to officially diagnose me as Parkinson's, well...It's just more than I can bear right now. My mental health is competing with my ever existent excruciating pain.

I have all this wonderfulness going on with Bill and that is what I focus on the most. All this crap came to a head today. I know that i'm going to work through it and I know that whatever is meant to be will be. There's no way for me to know my best possible outcome. Worrying is pointless. i know all that. This information is new and it will take a bit of time for me to process it, that's all.

OH. One piece of news...I won't get any worse once I start the cannabis oil. Cannabis oil is quite expensive for those in illegal states. Sigh."
I have all this wonderfulness going on with Bill and that is what I focus on the most. All this crap came to a head today. I know that i'm going to work through it and I know that whatever is meant to be will be. There's no way for me to know my best possible outcome. Worrying is pointless. i know all that. This information is new and it will take a bit of time for me to process it, that's all. 

OH. One piece of news...I won't get any worse once I start the cannabis oil. Cannabis oil is quite expensive for those in illegal states. Sigh." 

"I do feel everyone's support and it means more than I can say. I woke up this morning with my mind set that the law if attraction, cannabis oil and a healthy diet are my prescriptions. I figure I have a good 20 years until my body gives way to disease IF that actually happens. I'm not going to spend the next twenty years of my life worrying about it. The probability of that happening is higher if I worry about it. I choose to believe that I'm not going to get any worse and I'm okay with living just the way I am right now, but I'm also going to believe that I'm going to be the first ever cure because belief, backed by love is a powerful, powerful weapon that I'm going to wield wisely."

Happiness Level: 
2 out of 10 (10 being the worst) until I heard about this news around 5pm. Then I cracked and the waterworks started flowing. I was deeply upset, unable to see the positive.

Stress Level: 
4 out of 10. (10 being worst)

Bedtime and Sleep issues:
Couldn’t sleep. I was in too much pain.

Marijuana type & consumption: 
2 bowls at 5am (cat piss and Berry white), 11:50 am: bowl of Berry White

Stress Level:
4 out of 10 (10 being worst).

Conclusion/Question: 
I should take pics before and after smoking. Like I said, the law of attraction, an organic diet and cannabis oil are my future. They are all three of the utmost importance. Until I go to Colorado I’ll have to worry about positivity and the diet.

Sat, Aug 2:
long car drive day going into Austin for Lexi's bday party at the mall. Very tired.

Sun, Aug 3:
8 out of 10 pain level.

Mon, Aug 4:
7.5 out of 10 pain level.

8 out of 10 stress level. Stress due to kids testing my limits.

August 5, 2014:

Today is Tuesday.

Pain Level: 
6 out of 10 (10 being the worst).

Symptoms: 
Pain upon waking this morning. I remember crying out in my sleep early this morning.

Pic of left hand 8:40 pm Before smoking: 

10:00 pm After smoking:

Pic of right hand 8:40 pm Before smoking: 

10 pm After smoking: 

What's going on in my life today: 
Visited with Louie Minor, Running for Congress in 31st district in Texas, and told him that I was concerned about pesticides in our food. My girls are visiting and today I made my texmex black bean burgers for dinner. Both girls and Bill loved it!

Mental: 
I've been kind of depressed this past week.

Happiness Level:
4 out of 10 (10 being the worst)

Stress Level: 
6 out of 10. (10 being worst)

Bedtime and Sleep issues: 
I had an extremely difficult time sleeping the past couple of nights.

Marijuana consumption:
Not enough today, but we just got my favorite: Blue Dream!

Private life: 
Bill is being very supportive and sweet and so are all my friends. :)

Wellness Journal | Painful Storm

I'm documenting everything on a more regular basis so that I can keep up with my progress and so that I can show this to my doctors. I may not do this every day, but I'm going to do it as often as I can. So, here goes another Guinea Pig experiment!

July 23, 2014

Pain Level: 6 out of 10

What I did today: went to Summer Fun Water Park in Belton, TX with Bill and the girls. Lexi is 10 and Mira is 7.

Symptoms: Dizziness is better than yesterday. Yesterday I barely moved and I was dizzy and felt faint. I fell twice. Pain in left and right arm. Can't lift much in either arm.

Marijuana consumption: smoked 1 bong morning, 1 bong noon and 1 bong night.

Private life: Bill is going to ask me to marry him! We are moving to Colorado and we've started announcing it already. We're making plans to move to CO on March 1. We will be married before we move. Susan and Mira don't know yet. We are waiting to make the announcement until after Bill talks to Sue.

July 23, 2014

Pain Level: 8 out of 10

What I did today: Drove to Austin today for Mira's eye doctor appointment at 9:15a. Drove to kipp for back to school registration. Drove home at 4:15. While driving I almost knodded off as I got to Florence, 40 minutes into my trip. I swerved and jerked the car straighter. I gasped and sobbed, but quickly shook it off.

Private life: I announced on fb today that we're moving to Colorado. It makes me sad that I have to leave my girls, but it's not for forever.
Symptoms: Severe cramping in left arm and hand. I kept it tight to my body today in the hour long drives and around Daryl and strangers. Now it's difficult to get it to stop moving, but my hand stays in the position of Pics 7.23.14. Hard to concentrate. Tired. consumption: smoked 1 bong morning, 2 pinch hitter 11:00am, 2 pinch hitter 4:10pm, 4 bongs between 5-7:30p.

Mental: I'm trying to stay positive and remember that I need to live in the moment with the intent that Colorado is my goal. Bill is my future, but I won't have a future if I don't go to CO for cannabis oil.

I worried that I couldn't self diagnose myself, but I have nothing to fear. I'm going to keep my appointment with dr. Varga to let her know my concerns. My concerns ARE valid and so are my thoughts.

Then I remembered that I'm not in control and hurrying my life along is not natural. It needs to evolve naturally. 

July 26, 2014

Pain Level: 6 out of 10

What I did the past three days: I was in SEVERE PAIN and I was baked the entire time from a road trip alone to Austin. Bill and I have discussed it and we agreed that I can't make the trip alone again.

Symptoms: very tired. No motivation. Left arm, hand and shoulder in pain.

Private life: I'm starting to lose my positivity. I don't believe Bill and I are getting married and I don't believe that cannabis will cure me and I am very, very sad and pissed off as fuck that I have to move to CO and leave everything I've ever worked for AND MY CHILDREN. (See Pic 7.26.14)

Marijuana consumption: 1 bong, 3 cups of day old stem tea

Mental: see private life

July 27, 2014

July 28, 2014

July 29, 2014

Pain Level: 7 out of 10

What I did today: ate breakfast at Meños, hung out at home, Facebook, looked up stuff on Pinterest, more energy today so cleaned dishes and kitchen sink, counters and floor, washed my lingerie.

Symptoms: cramping in hand, wrist, and periodic spasms in left shoulder. Body seems to dance a lot more than usual, even in front of strangers. Can't lay my hand flat, wrist is arched.

Private life: 

Marijuana consumption: 3-4 bong hits throughout day. Very lite consumption for me. Did a few vape hits, too.

Mental: I'm very emotional still and I'm being negative toward myself. It seems like I'm punishing myself for something....but I'm unaware of what that is...

Public Service Announcement | Antipsychotic Medications Gave Me Tardive Dyskinesia

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I have a brain disorder. A real brain disorder. It’s not made up. It’s called Tardive Dyskinesia and it was caused by antipsychotic medications that I was prescribed to help control my bipolar disorder. And the kicker? I don’t believe I ever had bipolar disorder. I haven’t been depressed, suicidal, manic, psychotic or anything but happy since I got off my bipolar medications. It was the best decision I ever made in my life. I just wish I had made it a little sooner.

Didn’t Realize or Recognize Signs of TD

Cristina Fender taking antipsychotic medications for bipolar disorder (left) and after stopping medications (right)

In 2009, I began having tardive dyskinesia symptoms, a serious side-effect of the antipsychotic medications I had been prescribed. My hand moved at night of it’s own accord. I thought it was stress and anxiety. I had no idea what it was. It hurt, but I ignored it.

After a year of blogging about living with bipolar (Bipolar Vida), I went to college full-time. I completely failed all my classes two semesters in a row. My doctor’s response was to put me on more bipolar medications. After failing the second semester, I declared war on all the medications that weren’t making a shred of difference to my mental health and I stopped taking them. That was in the spring of 2011.

Diagnosed with Tardive Dyskinesia

Late last year, I finally learned what was wrong with me. The hand, arm, neck, and leg movements resembled dystonia and Parkinson’s. I went to over ten doctors before one could finally point me in the right direction. Several doctors told me that I had a brain disorder, but none of them could pinpoint exactly what it was and how they could help me. I was told that it was “all in my head” by half of those doctors. I knew they just didn’t really know what it was, but just because they weren’t sure, did it mean it was okay to make me feel inadequate? I finally received a correct diagnosis of tardive dyskinesia.

Antipsychotics have caused tardive dyskinesia in over 200,000 patients in the United States. And that’s a conservative number because many patients won’t even notice it and since most only get 15 minutes during a visit to see the psychiatrist, it’s possible your doctor won’t notice it either.

I Never Thought It Would Happen To Me

Most patients suffer from tardive dyskinesia only a couple of years before it leaves their system. I’ve been suffering for four years and it’s progressing. There may come a time when I can no longer use my left hand and arm and when I will no longer be able to control and hide my TD symptoms from others.

After learning my diagnosis, I was so angry with myself. Why hadn’t I done more research on all of the side effects that were listed on those white leaflets that came with the medications? Oh, yeah, I know why. I never thought it would happen to me.

The drugs had made me so complacent that I never questioned my doctor.

Do you know what pharmaceuticals are derived from? Natural plants and toxic chemicals. Chemicals, in my opinion, that make you sicker than you ever were before you started taking them. For example, did you know that many antidepressants contain fluoride? Fluoride slowly, but surely poisons the brain and causes complacency. I was on antidepressants for most of my twenties and thirties. I can’t pinpoint that was the medication that sent me over the edge, but the possibility of being right is highly upsetting. It makes me wonder what other toxic chemicals are they putting in our mental health medications and it makes me sick to my stomach to think that most mental health patients have no idea what they’re ingesting.

Understand the Mental Health Medications You’re Taking

Before you pop another pill in your mouth, ask yourself the question, “Do I really need this?”

I do not give this advice lightly. I spent over five years on antidepressants, several different antipsychotics, lithium, Ambien, and Xanax. I was a zombie. I was a shell of the person I was before I ever was on those medications. They numbed me, yes, but they also filled me with chemicals that caused the my brain disorder.

I no longer follow a doctor’s prescription. My treatment plans have been devised from my own meticulous research. I choose how I’m to heal my body. I’m not following along blindly like a good little complacent patient anymore. The only guinea pig I want to be is my own.

(ED. NOTE: This is the author’s account of her personal experience and not medical advice. You should not stop taking medications on your own. Always consult your doctor about any medical or mental health concerns that you have.)

This blog was written by:

Cristina Fender started blogging in 2006. Her personal blog, “Raw Writing for the Real World of Bipolar Disorder”, and her blog on HealthyPlace.com, “Bipolar Vida“, won many awards, including being named “Top Patient Expert” and “Top Health Blog” by Organized Wisdom. Today, Cristina blogs at Guinea Pig about tardive dyskinesia and advocates for a more holistic approach to mental health. You can also connect with Cristina on Twitter and Facebook.

This post was originally posted on HealthyPlace.com