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Tuesday, November 11, 2014

My Story (1 of ?)

I started having symptoms in 2009. At the time I was misdiagnosed as bipolar and I was on every psychiatric horror drug known to man. Antipsychotics (Resperdal plus many, many more), Xanax or an equivalent and ambien. My doctor was convinced I was depressed because I was always fatigued. She said I was a difficult patient and I saw her every three months instead of six.

During that time I consumed lightly here and there and it really helped. I was writing Bipolar Chica (I was a popular mental health blogger at that time) and I branched out and wrote an article for Health.com about my marijuana use. The backlash was astounding. I got mass amounts of hate mail that said that a mother that consumed was no mother at all. 

I got really scared for my family and stopped consuming for six years. It was the very worst thing I've ever done for my health, because I believe marijuana could've altered my course and that's when my symptoms started.


Sunday, November 9, 2014

Wellness Journal | Psychogenic Non-Epileptic Seizures

Psychogenic Non-Epileptic Seizures in Conversion Disorder

I just got off the phone with my spouse. I asked him where he was and why he wasn't here when I called out for him. He told me that he had given me a kiss and said he was going to the bank. I don't remember that happening whatsoever.

My memory is pretty shot today and it scares me. I have to learn how to cope better with this. It's frightening to know that my mind is escaping me, but I had an epiphany.

So many of us that develop all the components of Conversion Disorder go on to have very debilitating lives. It makes me wonder... once the seizures start... These seizures are considered non-epileptic and it isn't supposed to be terminal, but I think it is. What if the seizures are doing more damage to my brain?

Yesterday I had another seizure episode that lasted a little more than half an hour. Bill has been taking  some video here and there of my episodes that I will share in the future, but for now I will retell last night's episode here.

I was getting upset about the medical marijuana bill. I have known for a very long time that my illness would not be on the list, but seeing it in black and white did a number on me. I was distraught. My arm immediately began having tremors, then my neck starting in with the tics that look like big jerks, and my ring finger started going nuts. I was trying to will my body to stop, but it wouldn't listen and I was getting frustrated and then I just shut down.

It was like I understood every single thing that was happening, but I couldn't speak or move any way I wanted. My eyes rolled and fluttered and it was so embarrassing to be out in public that way that I will not venture out again very soon. But beyond the embarrassment, I wasn't sure it was going to stop. The sheer pain that a seizure involves is debilitating. My entire body is cramped and my muscles hurt and my head is still hurting badly from a migraine that just won't quit. All light hurts my eyes and can trigger an episode. I was wearing my sunglasses yesterday, but it didn't do much good. I was at the Texas State Capital for a meeting for patients about medical marijuana. I somehow managed with Bill's help to make it to parking lot. I did make it and I am so very grateful to both Bill and the universe for seeing me through it. It's time for a wheelchair and a shower seat. 

I'm was going to stop taking my oil altogether, but I don't think I will be doing that anymore. I am going to continue taking the light dose I'm on. I can't continue to have these seizures. I believe these seizures are doing more damage to my brain every single time I have one even if western medicine doesn't say so just yet. I see people in my support groups. The ones that have seizures fair worse than the ones that don't and I believe this is the reason for it. Today I have pretty bad memory loss. To completely forget that Bill told me goodbye? To not even be able to recall a smidge of it? No, thank you, universe! This is not how I wish to live. I will continue on my cannabis medication. I'm a believer and I will never stray!!

Thursday, November 6, 2014

Wellness Journal | Psychogenic Dystonia

There is no rhyme or reason when I get like this. My body is not my own. I am tired and frustrated and sick and it is a never ending cycle sometimes. Sometimes I can see my way out, but right now I'm so frazzled.

I have to give up my medicine for the next week and I'm crying right now because it's going to be so hard. I've been experiencing horrible dystonia all week with sharp, piercing pains in my legs. It makes me cry out in my sleep at night. I am slowly losing my mobility. I have to use the handicapped carts at the grocery store. My tremors are worse tonight, not only in my arms, but in my legs, too. This is what happened last time I had a MAJOR episode that lasted for over a week.

So, I estimated how long it took between stopping my medicine last time and the reoccurrence of symptoms. It was five days. My neurology appointment in Houston is next week. Last time I went I only stopped taking my oil for a day. I want them to see me without it. I want it videotaped as I'm sure it will be. I want my illness to be well documented. I want them to see how much better I do on cannabis oil than without.

There are times when I still feel so alone. I have met some people online that have what I have, but it doesn't make me feel better to know them. It makes me sad for all of us. It makes me sad that so little is known about Conversion Disorder. The UK is reclassifying this disorder as a physical disorder next year and I'm glad. Maybe more doctors will take what we suffer into account. There's just not enough research into a disorder that's been around since before Freud's time.

I guess what would make me feel not so alone would be if there would be cannabis oil studies done on Conversion Disorder. Heck, even to know one other person that consumed to compare notes on what is the very best way to consume to help our symptoms would be so awesome and would make me feel less alone.

I know that my road is hard. There is very little research and very little people get completely better. I'm hoping for a happy medium. I want to manage my disorder as best as I can and enjoy my life as much as I can for whatever it is---MOST DAYS, but this moment is just not one of them.

I know I will prevail. I just need rest and relaxation and laughter. I need love and I'm happy to say that I have that in spades around here! I adore my man, my children and our life together. It's what gets me through all the tough times, it's what I hold most dear and it's what fuels me to do what I do. Passion and life is what it's all about.

Whew. I just smiled. Feels great!