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Tuesday, September 30, 2014

Doctor Notes | A Medical Diagnosis of Psychogenic Movement Disorder

Texas Medical Center

We awoke super early to travel four hours to go to Houston for a last minute doctor's appointment with the best neurologist in Texas. We packed all my pillows and electrical devices and headed out the door. I was a nervous wreck.

I did my best to stay calm. I smoked a lot of our delicious, medicinal quality Berry White because I didn't want to take my cannabis oil so that my tremors and tics would come out for my medical examination. We got there just in time to have lunch at Chipotle and eat a lunch out door listening to a disabled man play jazz on his horn. I ate a taco and a half and then threw the rest away. I was too nervous to eat.

A disabled man plays a little jazz for money on a street corner. 

We were in the middle of the Texas Medical Center which is huge with very tall buildings and lots of pedestrians and traffic. We had a bit of a difficulty finding where we needed to go. We entered in at the address given and then had to take the elevator up the crosswalk, walk into another high rise building and then we took the elevator up eighteen more floors. When we got off the elevator we walked straight up to the reception desk. Apparently this doctor was making enough money to afford to rent the entire floor of offices. The waiting room was large enough to fit 100 people more than comfortably. The chairs were plush and we sank into them as we waited. I momentarily thought about how much money all of this took to accomplish and how Big Pharma was making a killing off of this doctor.

We were efficiently ushered into the back offices by the nurses that took my weight measurements and checked my blood pressure. They were all up in arms about how my blood pressure would not read electronically. I told them that a manual one was needed as this always happens, but they insisted so that made me so nervous that, when they finally got a reading, my blood pressure was through the roof. It should've alerted me that all of that drama was merely 'forecasting' for the rest of the appointment.

We waited for five to ten minutes in their gigantic waiting room once again before an Indian doctor came out to greet us and took us back into her office. The large picture window captured my attention. The view was spectacular. I tried to make small talk with the doctor about the glorious view, but she said she didn't even look at the view (I began to think about why I would go to a doctor that didn't even appreciate this incredible view!), pushed my small talk aside and got to my medical history. During questions of when my symptoms first began (and all those tedious questions I have to answer every single time I go to doctors) I started to become extremely annoyed. I wasn't sure how much she was paying attention, but she repeated everything back to me accurately. After an hour we were sent to the waiting room again to wait to see Dr. Jankovic.

Dr. Jankovic is supposed to be the best neurologist in Texas. He has written many, many books on movement disorders and I was interested in seeing him because of it. We waited about twenty minutes before we saw him. He was short man with glasses and had a balding head with tufts of shocking white hair against his tan skin. He had kind eyes and was quiet as his assistant told him about my symptoms. He watched me as he listened to her. My body was acting up just a little bit, but not as much as it has in the past. I still had some neck tics and tremors. He began our discussion by asking me what tests I thought that I needed to have next. I told him that I thought that a Huntington's DNA test was in order and he agreed. After speaking with me a bit about what I was most concerned about (my short term memory loss, bad concentration skills, and forgetting words) he proceeded to tell me that he thought that my movement disorder was psychogenic, not Huntington's or Parkinson's Diseases.

My eyes grew big in amazement as he spoke. He said that he thought that stress was what was causing my movements. I grew quieter and quieter. This was the very best doctor in Texas and he was basically telling me that I was crazy. I waited until he left and then tears ran down my cheeks. I had been waiting for so long to hear something, to know something and this is all I had to show for it now. I was very distraught. This was the second time in two weeks that I had heard this same thing. I had just seen Dr. Verona at the Austin Neurological Clinic and his diagnosis was also psychogenic. In less than two weeks I had TWO neurologists tell me that all of this illness is all in my head! Haha! Of course it's in my head! It's neurological, BUT I'm not ready to throw in the towel and jump on the crazy train because I'm NOT crazy!!

This is not stress. This is REAL and it's GENETIC. My sister and I have extremely similar symptoms. My mom falls all the time, has horrible short term memory loss and cognitive problems. You can't tell me that stress is making us all sick. Basically, this doctor is just like every other doctor out there. He doesn't know anything so he blankets it with the term 'Psychogenic Movement Disorder'. The only thing crazy here is that western medicine cannot keep up with the increasing undiagnosed disorders out there. I've found so many undiagnosed neurological patients in my research and it's just crazy to say that we're all crazy!

After crying for a few minutes my tears dried up. I was not going to cry about this anymore! I am pretty okay. I'm good. I know I'm not wonderful, but I'm okay. I know my illness is progressing, but I do have a treatment plan that I've developed and I'm going to keep going. That is my purpose and that is the plan and I'm sticking to it.

Once I calmed down a bit further I realized that I had gotten exactly what I came for! I didn't hold much hope that this neurologist would be able to give me a diagnosis, but I did get the Huntington's DNA test, (that will definitively answer whether or not we have that and that's the scariest thing my sister and I could have) so I'm glad I got my blood drawn for that test before we even left the fancy office. The test results will be available in 6-8 weeks.

Bill and I left the office hand in hand and we were going to drive home, but decided to stay and have a date night in Houston. Bill was so great the entire day. He got off of work at the last minute so we could go. He spoke up during the doctor's office. He was my champion and I gazed at him as we drove down the freeway. I just wanted to spend more time with him and only him, so we put down our phones and spent the night lost in each other. We ate a lovely meal and watched a hilarious comedy in a mostly empty theater where our laughter rang loud and free. All in all it wasn't too shabby of a trip at all! I got what I wanted. I hope Huntington's is not what my sister and I have, but you know what I've decided? I'm DONE with all western medicine and it's uneducated doctors! Answers are overrated. Solutions are not!!!

I know there are many that are outraged at the medical system on my behalf. I think it's very sweet and wonderful that so many people have taken me into their hearts, but it is time to let go of the notion that only western medicine can help me. I have much still to discover, but eastern, holistic, and cannabis medicine are treatments I know will help me. I may never be cured of this neurological disorder, but I will do all I can to ease my symptoms and have a good quality of life. Do not cry for me, my friends! I am well, I am happy, and I am passionate about life. I am going to heal my life. I am at peace!

Wednesday, September 24, 2014

Doctor Notes | My EEG at Austin Neurological Clinic

This afternoon I had an EEG scheduled. I was not a happy camper. I admit that I absolutely detest all medical buildings and the people that inhabit them. Just thinking about going to one puts me in a horrible state of anxiety. Shout the word "Hospital!", and I'm bound to bolt out the door before the "p" sound creates the natural lisp sound in the word. When you've been to as many doctors as I have you tend to notice that most medical personnel are simply smart sheep. It sounds like an oxymoron, but let me assure you that it's possible to both be someone that is complacent and someone that is smart.

But, I digress. On my way to the EEG room I snagged a 'Neurology Now' magazine. I'm always on the lookout for information and when I see a free magazine like this one I take it so I can examine it later for sources. 

A portly man with a mousy brown comb over escorted me to the cluttered and slightly unseemly exam room with a cheap mirror bolted to the wall with plastic hooks and yellow fluorescent lights that instantly offended my eyes. He asked me to sit in a leather backed chair which was located next to a box of wires that were meant for my head. He began attaching them and the glue's chemical composition changed the entire smell of the room. My eyes began to water and I coughed. He paid me no mind and continued to apply the glue and attach a wire. I asked him to open a door and ignored me so I asked him again. He impatiently cracked open a door and continued with what he was doing. Bill had followed me into the room, but I told him to go sit out in the waiting room where he wouldn't get chemical poisoning. Yes, the odor and fumes were that bad.

My head pounded, the wires were attached and he asked me to lay down and covered me with a sheet. I was told I could lay on my stomach or my side or however I was comfortable as long as I closed my eyes. I lay as still as I could. It was uncomfortable laying there. I couldn't find a comfortable place for my arm or my hand. My back was doing that movement thing again and my right shoulder and hand weren't cooperating either. I was in pain, too, so that didn't help either. I actually wanted to go to sleep just so I could do something since I was bored sitting there without anything to do but sleep. Just as I was drifting off to sleep he woke me and told me to lie on my back. Then the strobe lights started. Omigawd, they hurt like a bitch. I am extremely sensitive to light. I thought I was going to start crying, but I didn't. I did, however, have convulsions. When it was over I slowly walked to the waiting room to meet Bill. I was exhausted and my head hurt and I felt like I was going to throw up. 

Bill got me a sparkling water and I looked at the Neurology Now* magazine I had picked up in the doctor's office. On the front cover the words, "Does medical marijuana ease neurologic symptoms?" popped out at me. 

Omigoodness! I didn't even read the magazine when I picked it up! What a happy, happy gift from the universe! The article discusses the promise of medical marijuana and a highly respectable neuropsychiatrist from a respectable university (I can't remember which one right now) states that marijuana shows much promise and there is much need for independent neurological research studies! I know it's not a coop, but it's a step in the right direction and that makes me KNOW that I'm doing the right thing. In my heart (and that's what's taking over these days) I KNOW that I am going to have a way better quality of life than anyone that chooses the ineffective, yet dangerous yellow pill road.

It's good to feel the certainty that I now feel. And it's good to remember that EVERYTHING happens for a reason. It gives me a little more peace to know that my journey will not just be a bit more secure, but  my step will be light as well!

*Neurology Now articles are available for free online and for your iPad. See the above link.

10/1/2014 EDIT: I received notice that my EEG was completely normal.

Tuesday, September 23, 2014

Treatment Plan | THE Original Treatment Plan includes Mind Powerful Meditation

I haven't blogged or written much about my symptoms lately. I've been taking a mental break from it all. I think I've been getting so caught up in trying to document every single little itty, bitty thing that I've missed the big picture.

I've been enjoying my children. It's been semi-sweet thinking that I might leave them to go to another state as a medical marijuana refugee. My children are young and impressionable and they desperately need me and I need them. I don't want to leave them, so when I see them I hug on them extra tight and smile extra big. They make me so happy! They are so beautiful inside and out and I'm a proud mother. :)

My cornerstone, my rock, my everything has been Bill. He has been here with me from the beginning. It was shaky between us at first. We didn't know how we were going to deal with whatever disease I had together. He wasn't sure that he could take care of me if it came down to it. It has come down to it and it's working beautifully. He holds my hand when I need it, gets my ass up when it needs to be, motivates me to be doing something that makes me happy. He watches me silently and he is noticing my symptoms. He's my extra pair of eyes. He is not a passive observer in my life. He's an active partner to me in every way. He always has my back. I can always count on him and I trust him like none other. I'm a lucky, lucky woman and I count my lucky stars every single minute, no...every single second of the day for him.

But it is his urging that makes me document this when I really don't want to...

My arms H U R T. They fucking hurt. They won't fucking stop hurting. i just want them to fucking stop hurting. why the fuck do they hurt????????????????????

Deep breath. Wipe tears.
Another one.
Wipe again.

The tremors are coming back just a little bit, but not a lot. The wrist is starting to bend again, but not a lot. The pain was getting better, but today it's worse. Those are my physical symptoms.

Writing this has made me cry, but the rest of the day was beautiful. I had a very nice day with my sleeping prince. Bill really does make all of this so much more bearable. I do enjoy my life. I do enjoy the work that I'm doing to help legalize marijuana. It is remarkable and very rewarding work.

This morning we were having breakfast and I happened across a faux report stating that Texas had legalized marijuana. I didn't know it was fake. I read it once. My heart was beating quickly. I read it twice. Tears started streaming down my cheeks. Bill joined me and he asked me if it was true. I said that I didn't know, but wouldn't it be fucking awesome?!? We smiled largely at each other through our tears. And then we found out it was fake.

So, because my arms hurt and I can't yell at them, I'm going to yell at Snope. YOU MOTHER FUCKING BASTARDS!!!! We have sick children that are separating and migrating away from their parents just to have a better quality of life! Please don't make this worse for them and for the rest of us waiting in dire need! Please have hearts!

The reward hasn't come yet obviously. Texas has not legalized marijuana through some miraculous bill. I mean I thought it was fishy to read that Perry was doing it. Wasn't he indicted? Wouldn't that mean this power is suspended or something?  Anyway, the reward is coming. It will be here soon. I believe that medical marijuana will come to Texas and I'm going to fight for it until it does.

(That was important to note, but what's more important to get back to is my original thought. I had to reread what I had just written to get it. It's a memory thing that I'm dealing with. We'll have to get used to it together as reader and writer...)

The big picture...There's a bigger picture here than just my symptoms and Bill and me. There's the universe. Somehow it's brought all this together.... Every single piece of it is as it should be...for whatever reason that has yet to be revealed. I trudge on in positivity usually, but lately I'm floating around. My love for Bill and his for me is radiating between us and I'm channeling it again in my chest. I feel it floating there like a ball of fire. I'm channeling it into my arms. I feel the energy pulsate  down my shoulder through my elbows and down through my fingers. I'm getting back to my original plan. I'm getting back to this plan of healing myself with the sheer will power of my mind and I'm going to do it with the love that I'm feeling right now.  I'm channeling that into belief that I will be well and I'm going to do find more to back it up by meditation. I'm going to elevate above this consciousness.  I've been collecting medications, but it's time to find some news ones to inspire me, too....My original plan included cannabis oil and I just realized that I have every single ingredient together that I put on my vision board!!!! Now it's time to get to work!

Oh? That big picture? Yeah, well, I'm getting to work!!!! You want to find out what's going on in my head? Follow me on Facebook most of all, Instagram second of all and Twitter if you must! ;p

Monday, September 15, 2014

Wellness Journal | Progression Notes

Pain Level: 
4 out of 10. (10 being the worst). This morning when I woke my pain level was 7.5. I smoked a couple of puffs, approx. .125 g, then took a tsp of canna-coconut oil, then took my morning dose at 8 am, so OF COURSE I'm felling better!!! Yay!!!

My arms hurt like a bitch. It's difficult to move them. And we had a little bit of a difficult time this morning finding a position to make love because my arms weren't comfortable.

Progression notes: 
I'm starting to feel like I'm improving. My tremors have improved drastically!!!!!! My wrist is pretty straight although it still has pain. My fingers still cramp. My shoulders are stiff. I'm having a difficult time turning my neck. Holding things or doing things with my right arm is painful. My feet are still moving on their own and doing that high heel position when I walk. My cognitive dysfunction is continuing with memory problems, forgetting words, and having difficulty spitting words out. These are still better than they were last week when I went to the hospital.

The only therapy I'm doing right now is that canna oil and I'm disappointed in myself. But rather than beat myself up, today I am going to do one thing on my wellness plan. I'm going to sit down and create a NEW one.

Happiness Level:
2 out of 10.
(10 being the worst.)

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

Bedtime and Sleep issues from last night:
Got really tired after increasing my nighttime dose and went to bed at 10:30 pm.

Wellness Journal | Symptom: Stutter, Balance Problem, & Dyskinesia

Extreme stuttering due to being stuck. Couldn't get the word out. Words ran together when spoken. Real balance problem, stumbling. Dyskinesia in my feet. Bill thought I Looked like I had a stroke.

It lasted all day.

Sunday, September 14, 2014

Treatment Plan | The Secret: Belief is Half the Battle to Wellness

I've been receiving messages from the universe telling me to get serious about my health. I haven't been keeping up with my wellness plan lately. I'm just going with the flow everyday trying to stay afloat, but that is no way to live.

I have something I need to accomplish. I need to be well, but I think there's something holding me back...I've been listening to a lot of law of attraction podcasts and one caught my attention. It said that the best way to get what you want is to make a list of cons for the thing that I want. So, here goes nothing...

List of Cons for getting well
  1. I won't be able to write with a boring 9 to 5 job. 

It's good to know there's only one thing holding me back from getting better! That's good, but this con list is not what's holding me back. I think what's holding me back is my negative self talk. I am always on the lookout for symptoms and I find that each time my symptoms are bad that my negative self talk turns up the volume. I'm sure that it's having a negative impact. The more I think negatively about it the more it promotes bad health because that's the law of attraction. The more you think about something, good or bad, the more apt that is to happen.

A good book, The Complete Self-Care Guide to Holistic Medicine, introduced me to the wellness wheel. The concept reinforces the idea that the only way to complete wellness is to make sure that all the cogs in the wheel of your life are worked on. The cogs are relationships, physical health, mental health, career, etc. To be well it is important to succeed in each of these areas. I believe that, in order to achieve that, The Secret must be learned.

So my main focus right now in my wellness plan is to have better positive self talk about all my symptoms. I may have brain fog, I may have cognitive dysfunction, but my heart is making up for it. I'm loving more and allowing more love into my life which is something I've never done before. I'm trying something new and focusing on the good of love and it's being returned. Now all I have to do is do that with my health and I will begin to feel better.

Belief is half the battle and that's where I'm getting stuck. I'm having a difficult time believing that the cannabis oil will work. Right now I'm on Day 10 of the new cannabis oil long term study. I've had to back track so that I can slowly increase my dosage so that other neurological patients can benefit from my experience and experiment. I had wonderful success with the short term study and this long term study will not be any different as long as I utilize other components of my wellness plan. The steps to wellness must begin with belief. As long as I have belief that I will get well then it will be so!

Saturday, September 13, 2014

Wellness Journal | Symptom: Pins & Needles in my Hands

Numb. Tingling left ring finger, middle, index, and thumb. Entire hand hurts. Unable to hold anything in it or lift it.

Both arms have problems, but the left hand has the worst pins and needle feelings that generally occur in the morning after waking.

Thursday, September 11, 2014

Progress | Dysfunction Junction Part 4

Continued from Dysfunction Junction Part 1, Part 2, and Part 3

Yesterday I went to the emergency room because I had horrible brain fog and a horrible feeling in the pit of my stomach. I did not go to the emergency room the night before when I had that terrible episode and I regretted my decision.

I spoke to my sister on the phone and I was telling her about the episode and how I was feeling and we mutually agreed that I should go to the emergency room.

I was anxious. I had been anxious all morning and I couldn't shake it. I was in tears and I didn't want to go to the emergency room when Bill came home from work to take me. I felt bad asking him to quit working, but I was so grateful that the minute I mentioned the word "hospital" he said, "Let's go." I gathered up my kindle and my purse and we headed out the door.

I was already not feeling right and all of a sudden my head started that weird tic thing that started this past Saturday. I was instantly embarrassed and it made me tear up. I started walking funny, started arching my feet while walking just like this past Saturday. When the nurse was checking me in I was having balance issues so they let me sit down. My neck was working overtime so much that it was starting to hurt from the tension.

They got me a wheelchair (I was looking pretty crazy by then) and wheeled me into the drab emergency room. The nurse asked me questions and when she left I had another episode just like the one from the night before. Bill went out to get the nurse so she could see it, but she never came into witness it.  I had three more episodes while we waited.

The PA came in. I was disappointed it wasn't a doctor. He said he had ordered some tests, but didn't tell us what they were. A nurse came in and did an EKG even though there was nothing wrong with my heart.

I felt like all of this was an effort in futility. I asked the nurse if the doctor was going to come into see me because I needed an EEG. She looked at me funny before answering that they didn't have one there. My heart sank and I sighed. We left within ten minutes.

I made an appointment yesterday before going to the hospital to see my Primary Care Physician. We felt that it was important to keep the appointment because I need a referral to see Dr. Jankovic, a neurologist and movement disorder specialist in Houston, and because I wanted his advice about what to do since I'm in-between neurologists. (He thinks he's a guru, by the way.)

Dr. Killian listened to me and took his time. We discussed what had happened and he spoke about partial seizures being a possible answer as to what is happening to me, but in the same breath he cautioned me about using the word "seizures" to describe what's happening to me to doctors. He said it's best not to do that so I don't get a false diagnosis. I kinda think that's ludicrous, but am willing to operate on the side of caution. He gave me prescriptions for some blood work to test for autoimmune diseases and an EEG.

The minute I came home I crashed for a two hour nap which I desperately needed. I'm still trying to make up for that lost night of sleep I had this week. Throughout this ordeal I haven't slept much. I've been anxious. I've been a weepy mess. I've been so very negative. It's like I couldn't see the forest for the trees. I was so focused on this diagnosis or lack there of. It's so incredibly frustrating to see these doctors. I started thinking woe is me. I started thinking that this is all in my head because the doctors all say so. The only thing that's in my head is negativity. I need to replace it with vital positive thoughts. I cannot continue to go down this path because it is not the path to wellness. So, negativity and I had a chat and we broke up!

Now my train seems a little happier. Still on course. Still chugging along without my authorization, but at least the horizon ahead is looking sunny, blue and full of white fluffy clouds.

Wednesday, September 10, 2014

Wellness Journal | Symptom: Vertigo

My vertigo last seconds most of the time, minutes other times (sometimes even day long on repeat), but my head pounds and my ears feel like they're filled with water. Everything loses focus and I feel like I'm going to pass out.

It feels so weird. I can't move I can't talk I can't see and all I did was lay down on my stomach on the bed or lean down to get something off of the floor or just standing up. It's not fun at all.

Tuesday, September 9, 2014

Progress | Dysfunction Junction Part 3

 Continued from Dysfunction Junction Part 1 and Part 2

Another scary night. Bill and I had just finished making love when I had a seizure. I think these are seizures after talking with my sister and with my nurse friend.

I arched my back, pushed my neck into the mattress and lifted my hips. I felt the tremor start at the base of my spine and travel up to my neck. I gasped from anxiety then struggled to breathe. I felt my temples swell and bright lights pulse while my eyes were closed. It was hard to hear Bill ask if I was alright. I tried to answer, but I couldn't get any words out. My body convulsed and it drew into itself in the fetal position. It was scary to say the least.

 I gasped for air and started to get panicked. Something told me to calm down, so I let go of my control. I finally was able to tell him, "No," and my body relaxed.

I cried for a bit afterwards. This is so scary. I'm losing control of both my brain and my body at the same time. 

Monday, September 8, 2014

Wellness Journal | Symptom: Itching

Horrible itching going on...on my legs only. They feel like they're pulsating. It's a horrible feeling almost like I almost don't have legs. I scratch my legs so much lately that they're bloody messes. 

Sunday, September 7, 2014

Wellness Journal | Canna Oil Longterm Study Day 3

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

right shoulder pain, a big tic woke me up in my neck, some slurred speech, but not too bad.

What's going on in my life today: 
Bill and I set a wedding date! Shhh!

Happiness Level: 
3 out of 10. (10 being the worst.)

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

Bedtime and Sleep issues from last night: 
not tired until am.

Saturday, September 6, 2014

Progress | Dysfunction Junction Part 2

The train continued its fast past by making today the very worst that I've ever had in terms of tremors. This morning I woke in terrible pain in my right shoulder and neck. I woke up, stiffly got up out of bed and stumbled into the shower. As soon as the scalding water hit my neck and shoulder I started crying. I was in serious pain. 

I stood in the shower as long as I was able and then I made it back to the bed and waited for 8 am. It came slowly. Bill brought me my morning dose of Cannabis Olive Oil (my healer had authorized an increase) and I was almost in tears again when I saw it. I desperately needed relief. I waited one hour and then I gave up and smoked three bowls of marijuana.

I made love to my significant other and then got up to get dressed. My movements did not get better after smoking, but my mood did and I got ready for breakfast. During a normal Saturday morning conversation my spouse and I converse in a lively manner and today was no different. As I was trying to put on a shirt and yoga pants I began to notice pretty severe tics that I could not control. It seemed like the tics were going to happen today no matter what I had planned.

They are just as weird and odd looking as you could imagine. My neck kept jerking to the left and my speech was noticeably slurred. I could tell that Bill could tell, but he never said a word about the cognitive dysfunction. He made some half ass joke about my tics, but other than that said nothing. He held onto me and asked me constantly if I needed help. I can tell often when he's feeling overwhelmed with everything. He's such a special intuitive and empathic man. I don't often have to tell him how I'm feeling because he just knows and he sometimes knows before I do.

I found an Austin 420 magazine in the car and I began reading aloud an article that Tracy Ansley wrote about the Texas Exodus to Colorado because neurological disorder patients seeking medical marijuana are moving there. It was about this young boy who had to move to Colorado without his father and how much he misses him and wishes that marijuana were legal in Texas so he could be home again with his family. My throat caught in a sob the minute I ended the paragraph. I looked at Bill and saw tears rolling down his cheeks just like mine. We smiled at each other and then Bill helped me into the restaurant. 

My legs began doing a very odd dance as we looked for a booth. Walking that short walk was interesting because I found myself stopping a lot. I also started doing this thing with my feet where I stand up on my tip toes as I walk. We ordered and talked a little. My speech was slurring and I found myself almost stopping quite a bit. Some of it was because I couldn't start a word. Either I couldn't remember it or I couldn't get it out of my mouth. There was a bunch of stuttering. Stuttering has been going on for quite a bit now, but this was new and more pronounced.

The food finally came. I was starving. I started filling my tortilla with eggs, potato and beans and found that I couldn't do it very well. I was moving so very, very slowly. My fork went toward the beans and slowly moved to scrape it into my tortilla. I tried to move faster, but I just couldn't. The eggs were a bit harder to scoop up, but I managed to get some into my taco. The slowness wasn't getting to me I kept repeating internally, but, then again, it was. Then there were three or four fried potatoes to place on top. Then there was the salsa. Then I had to stop and drink a bunch of water because I was so very thirsty. By the time I had finished loading up my first taco Bill had already eaten half his plate and I was sick of eating.

After breakfast we went and picked up my daughter for her weekend visit. Usually I try to not show my girls what I look like when I'm like this, but today I decided that I'm not going to try to hide it anymore in public. It's stupid really, because if I try to stop the movement from happening in one area then it just moves to another or the movements get out of control. I notice that if I just let them happen that I feel better. My muscles don't get quite as tense.

Today I showed my daughters my terrible movements. They were understandably not happy about the day's illness, but they were okay with it. My youngest told me that I looked funny when I did my head jerk movements which, thankfully, didn't last too long. I told her that I'm sure they looked funny, but they did not feel good and that I was embarrassed about what it looked like. My seven year old stopped and thought about it before telling me that I shouldn't be embarrassed and I was the best mommy in the whole world. That made me smile really big and it warmed my heart. She's such a wonderful, empathetic old soul!

After dinner my kid and I went to Kmart to buy her some clothes. There's only one handicapped shopping cart in the store, so M pushed the cart for me and we shopped. I was happy, but exhausted. My body had been through hell already with constant movements and it was tired, but I had a job to do for my daughter. 

While trying on clothes I noticed the attendant paying attention my conversation with my daughter. I wonder if the lady thought I was drunk when I spoke to her. My words were slurred, filled with stutters, and I bumped into stuff when I walked near her. 

My train is on a fast track, but right now I'm having a bit of reprieve. My body is finally slowing down and my brain is slowly lifting the brain fog alert. The aches and pains are at a higher level than normal, but it's manageable. I had someone ask me how I stay so strong which is very sweet. I thought about it before I replied, "It's not that I'm strong. I have belief that there is a reason why I'm on this blazing train. Maybe it's because this is what I'm supposed to be doing. Maybe this is my reason for living."

Friday, September 5, 2014

Progress | Dysfunction Junction

I remember the very first time that I couldn't feel my fingers. It began in my middle finger that morning. The finger just got increasingly numb until I couldn't feel it at all. Then it moved into my fingers next to it. Eventually it also moved onto my thumb.

The very first time I experienced it I cried out of pain, but by the third time I cried out of fear. I was scared that I was going to lose the use of my hand, but, of course, I haven't. My hand is still working, just not at full capacity.

For the past couple of weeks I've been noticing a pattern, but not recording it in my journals because I'm scared again. I'm beginning to lose feeling in my legs. It started with my feet going to sleep. I recall them doing that more a few years ago, but the doctor said that was due to having diabetes. Since I've been controlling my diabetes with an organic diet and marijuana I haven't experienced my feet falling asleep until a few weeks ago. It began happening daily. I massaged them and noted it in my head.

Then I started losing feeling in my legs. I noticed one day that I started scratching my legs and wondered briefly why that was. Went on my merry way until I began to notice that I didn't feel how hard I was doing it and my legs ended up with bloody scratches all over.

Tonight I massaged on some coconut oil onto my feet because they've been uncharacteristically dry lately. I didn't feel my feet really. It was like they were there but it wasn't my body part. I rubbed the rest of my body. Sensation has diminished significantly in the last two weeks in my entire body.

And, so, I cry out in fear again. But I'm not just crying over the loss of sensation.  I'm losing something worse. I'm losing my words and thoughts. I've been having memory problems for a while now. I'm having difficulty accessing commonly used vocabulary words. Instead I find myself hemming and hawing while I try to think of an alternative. I find these memory problems annoying and upsetting, but nothing prepared me for what happened today while I was writing.

I was working on my bio for a flyer because I've been asked to speak on GMOs. I had to take the bio off of this website and somehow get it down to two sentences and have it speak to who I am and somehow convince readers to attend the class. Kind of tricky writing, but not horribly difficult. I had to look at the paragraph several times. Not only could I not piece together the sentences, but I couldn't understand my own writing because my brain was confused.

It was truly devastating, but I haven't cried about it. I don't think I can wrap my head around the fact that this may be the best my writing will ever be. My brain will start deteriorating. It's a fact that happens with most neurological disorder patients. The sooner I accept it the better.  I have a family medical history of Alzheimer's, so it was going to happen anyway. I always thought I had more time, but it doesn't look like I do.

This illness seems like it's on a fast train with a missing conductor. All I can do at this point is get out of the way. I'm not going to cry about my writing. No matter how much it hurts me to see dyslexia type typos, no matter how many sentences I have to fix, no matter how many angry tears I brush aside I will never stop trying to get my brain to function and I refuse to give into fear. Fear is a small measly man sitting on a doorstop waiting to pounce on it's next victim and I solemnly refuse to let that be me.

Thursday, September 4, 2014

Wellness Journal | Canna Oil Longterm Study Day 1

New Therapy and Study: 
Combined 1 mL Cannabis Oil + 14 mL Olive Oil and take a measured dose according to my healer's instructions.

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

Right shoulder, bicep, Both legs very sore from walking yesterday in Austin, entire body sore. huge back cramp in the middle of my back last night before bed. Not feeling My ankles and legs whole bunch right now. Pain everywhere, but centers in my neck on left side. Super sweet Bill massaged me this morning to help with all the soreness :)

What's going on in my life today:

Not much. Kind of a lazy Friday. This is the first day I’ve tried this new therapy. I hope it works out well. Bill and I keep discussing whether or not we should move to CO. It’s difficult because I know that I can get my therapy here, but I’m worried about getting caught. I guess I have to know that I’m on the right side even if I’m on the wrong side of the law. I hope that it can all be resolved. I’m probably just being paranoid.

Happiness Level: 
5 out of 10. (10 being the worst.)

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

Bedtime and Sleep issues from last night:
NONE. Slept soundly from 10 pm to 7:30 am.

See Day THREE.
Please note: This study will be posted sporadically.

Monday, September 1, 2014

Wellness Journal | Cannabis Oil Concentrate Short Study Final Day

Day 17, Final Day of concentrate short study

Pain level: 
5.5 out of 10. 10 being the worst.

1st cannabis oil dose: 8:30 am
Time I felt the dose: 8:45 am
Duration of dose: 8:45 am - 11:45 am
Thoughts: kind of a happy, mellow high. I felt a lot of pain upon waking and now I feel half of what felt then.

Pain level at 11:02 am:
3 out of 10. 10 being the worst.

2nd cannabis oil dose: 
12:30 pm

Time I felt the dose: 
1:00 pm

Duration of dose: 
1:00- 3:30 pm

I'm feeling a little bit of pain, but this dose is pretty good. Helps with pain and anxiety, but still aware of what's going on.

3nd cannabis oil dose:
4:30 pm
Time I felt the dose: 
4:52 pm

Duration of dose: 
4:30- 7:30 pm

tremors, left shoulder tics, right shoulder quick up motion tic, wiping nose tic.

Progression notes: Right hand and arm feel better today! For the last three days it's gotten progressively worse in weakness. Still sore, but better and stronger today.
What's going on in my life today: not much. Kind of a lazy day. Exchanged the girls with Daryl today.

Happiness Level:
2 out of 10. (10 being the worst.)

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

Bedtime and Sleep issues: 
Slept like a baby!!