Kristen Wiig Reenacts My Lyme Seizures

It's 4AM and 2 weeks later. I honestly didn't think I'd be back this soon. Insomnia hit me a few hours ago, husband is off to a side job, and the cats are in the next room playing parkour again. May as well share what brain activity I can with you while I can right now. I do my most lucid thinking in the wee hours as it seems.  So without further ado, I bring you my next entry.

They are back. There has been 3 now in the past week. Well, 3 notable. When you hear seizure you probably think I'm spitting pea soup and wonder why I'm not in the hospital and how come my licences hasn't been taken from me yet. You are thinking gran mal. Usually associated with Epilepsy. That is all I used to think of as well. I was pretty afraid when I first started getting these disruptions in my body. It was pretty frighting. I've mentioned before I can feel mine coming. I get a sense. Sometimes I just go blank, or I will have an aura headache, blinding brightness in my eyes or extreme vertigo. Sometimes all of my senses are super-powered right before it will happen. I will retreat to my room. Here lately, it is just happening. Not much of a warning. In the middle of the day, in the middle of sleep. I loose my ability to speak, to walk, to control my hands, swallow, breath. The difference between the type of seizure you may think of and the type I suffer from.....I am wide awake during the entire thing.

 A seizure is defined as uncontrolled electrical activity in the brain, which may produce a physical convulsion, minor physical signs, thought disturbances, or a combination of symptoms.

To help you better understand, I will explain the different types.While this is scary as all "le chiz" to my family who has witnessed these episodes, I have to bring a #funnynotfunny factor to the table. I also have to find a creative way to keep your attention. For this reason, Kristen Wiig is gonna help me out.


******{this is not intended to offend or discredited anyone's pain and suffering as myself am a pain and suffer just tryin to find my way and that is my disclaimer}

There are 2 categories for seizures. General (produced by the entire brain) & Partial (self-explanatory)
Under General there are 6 different types:

*Gran Mal~ This is the most serious and scary of them all. The one you are probably most familiar with. The patient becomes tonic and loses all consciousness for 30-60 seconds and violently jerks before possibly falling into a deep sleep. Most commonly associated with Epilepsy.  I have never experienced this. Thank you, Jesus!

*Absence~ cause a short loss of consciousness. This only last for a few seconds. Patients are usually not even aware that this has happened. Only that there has been a sense of a loss of time. So THAT is where my day has been going!!!! For reals. I just blank out. I'm proof it is possible to think of nothing.


*Myoclonic~sporadic jerks. Usually on both sides of the body. Patients usually with throw objects if holding them. GUILTY. Ummmm......Kenneth, Remember that time that fork went flying across the room when all I was trying to do was put some food in meh mouth?

 *Clonic~repetitive, rhythmic jerks that involve both sides of the body. Been there, done that. Wake up the next day feeling like I worked out the night before I'm so sore. Friends, these leave me spent. These are what I have most commonly.


*Tonic~stiffining of the muscles. My kids got to witness this in my hand just this past weekend. The day after I had a Clonic. Not to be confused with a colonic.


*Atonic~sudden and general loss of muscle tone, usually limbs. Normally results in fall. The only time I have had a problem with this one has been when I have been doing some major herxing and I just lose all muscle control. I cannot even feed myself when I get to this state.



 Partial seizures are divided into simple and complex and secondary generalized. The difference between simple and complex is that with simple, patients maintain awareness whereas complex, they lose awareness.

This area affects the motor skills, the senses, memory, emotional disturbances. Jerking, spasms, and so on.
It is not uncommon for more than one of these to occur at a time. ANY of the above.

THYROID ULTRASOUND tomorrow. It has been 2 years since my partial. If I have a clean report, I'm G2G.  I visit a new doc next week and keep pressing forward. This solitude thing is a little more somber than what I figured it would be. I mean. I think the crickets can hear crickets. 2 weeks no social media now. I'm learning stuff. Life.

Well, this is all for now. I'm off to heal today. Kristen and myself thank you and wish you a sunny weekend.


      

An Open Letter

Day one:

I don't often go back and reread my past posts. My mind is becoming more and more clouded these days, therefore I did this time. My emotional state has not changed much. My heart hurts now more than ever. Not a day goes by that tears do not meet my cheeks. I'm broken. I am defeated. I do not expect you to understand.

This past week my daughter had her high school end of the year choir show. An hour before we were to leave I was downing water and laying back after a bath in hopes of easing my tremors and the brain rattles I was having. I'm walking in a constant nightmare right now. I stepped out into public. This was a first for me. I have always hidden away when these episodes hit. They are just running into each other anymore. Too much for me to stay locked away. This was not an easy thing to do. The people, The sounds. The overload. I had to sit very still holding my arms as tight as I could at one point or I would have started having some major twitches. My husband wiped the tears from my face as I pinned my limbs and let my hair fall hiding my face from my parents sitting on the other side of me.

We left early out the side door before it was over to avoid everyone.

This is it guys. Friends, foes, family, strangers.....whoever you are reading this. I am not well. I am tired. Tired of the show, Tired of repeating myself. Tired of the pain. Tired of trying to please everyone. Tired of the madness. Tired of the bad news. Tired of being taken for granted. Tired of caring about some of you too much. Tired of smiling.

It hurts to walk, it hurts to turn over in bed, it hurts to breath. This is mentally taxing.

 I      am      depleted.

..........hold on.....I was just asked to come help and climb a ladder.......case and point........

My intentions are always to blog more. My life is full of distractions. Then when I do have time, I feel like a vegetable. I do not mean that to be cruel before you start thinking of me as insensitive. My brain is mush sometimes and all I can do is sit and stare. I do not have a conventional blog in which I am giving weekly dating advice or reviews on products. It isn't always easy for me to put into words how I'm feeling or what is going on. Sometimes I wonder if you really care. I see some of the crap that falls across the feed of my social media that some of you believe and subscribe to, but yet, you just pass me by. I'm someone who is real. You can talk to me, see me, touch me, pinch me.

As I have mentioned I was pretty ill at the beginning of the year and it has only gotten worse. I have started seeing the docs again, back on a few meds, rounds of labs and blood work, tests,.....as I was preparing to go back into battle, I was putting my binder of medical paperwork back into order. Looking over past lab levels and whatnot when I ran across something that my LLMD had ran that I have not shared with any of my other doctors and I just passed right over. Something detrimental and something that just blew me up against the wall as if I needed anything else.

Highlight-circled-and hand written notes: MTHFR two copies of the same mutation A1289c

Day two:

I am finding myself "nesting". I have been going through from room to room clearing out every corner. As I can. Organizing seems to be the only thing I have any control over right now. We made a trip to the recycle center today. I drug a bench that was in our back yard. As soon as I was finished dragging it a full maybe 10 yards I collapsed in tears in a melt down. Something isn't right. This is the third time in a week this has happened. I'm losing all control. I'm the strongest right now I will ever be. It is becoming painfully relevant.

MTHFR A1289c. I'm born with it. My body cannot convert folate or B12. It is vital for restructure of cells and detoxification. I'm sick on top of sick. Have been my whole life. The Lyme intensifies it. This increases chances of cardiovascular diseases and cancers.

Possible conditions associated with A1298C MTHFR mutations:

• fibromyalgia
• chronic fatigue syndrome
• autism
• depression
• insomnia
• ADD/ADHD
• irritable bowel syndrome
• inflammatory bowel syndrome
• erectile dysfunction
• migraine
• Raynaud’s
• cancer
• Alzheimer’s
• Parkinson’s
• recurrent miscarriages

So, you can only imagine my frustration now as I do not know what is MTHFR related (and yes, it does kinda look like an acronym for something) and what is Lyme related. I'm only left to constantly treat each symptom/disease/condition as I have it. This is a stress factor in itself. 

No one really asks anymore so I haven't shared. My last set of labs showed elevated blood platelets. They've gradually climbed over the past set of labs. Along with a lower than normal body temperature, there is reason for concern. I predict a hematologist in my future. 

You will see me in public. You may see me at the gym. Please be my friend. Do not pressure me into taking a class or pushing myself to go hard. I'm doing the best I can to take care of me. You may see me out having dinner with my husband. On a rare occasion anymore with a friend having dinner. Do not judge me and think I am well enough to go out. No. I am making the best of my time. I want to enjoy life just as much as the next person. You may see me at the store. I may not talk. I may even avoid you. Do not take it personal. I honestly, may not be able to speak coherently that day......I may not remember your name and I may be ashamed. 

On this I close. I'm very saddened currently. My heart is heavy. My life outside of sickness has not been easy lately. I have carried a lot of burden. I have been hurt deeply just this past week and am beside myself. For those reasons you will not find me on the social media platforms you are used to contacting me on.  I have removed myself from them. The emotional strain some of this has taken on me is not conducive to me trying to move forward in reclaiming my health. I may or may not be around here. I am not sure at all what direction I am headed in right now or how long or deep this road is going to be. Blogging may be difficult or I may find it to be the perfect outlet. For only time will tell. 

"They tell me to stay strong, but they don't know what it feels like to feel so weak."