What I Want my Amazing Health Team to Know

SpoonsFirst off, I have an amazing health team to help treat my Refractory Epilepsy.     I have a top notch epileptologist, Vagus Nerve Specialist who comes in from out of town once a month, an epilepsy nurse who is fantastic, a neuropsychiatrist who I see every 6 months, and a psychologist who I see once a month. Plus I would like to add my family and friends. Whew! What an amazing  team!

Although my epileptic seizures are under pretty good control now (HALLELUJAH!) there are things I need my team to know.  Epilepsy is not just seizures.  Epilepsy now for me means counting my spoons ever so carefully. If you don’t know what the spoon theory is, check it out here: the spoon theory.

I always need to make sure that I don’t over-book my agenda. If I have appointments that week, I really can’t over socialize. I also need to  make sure I have time to help my fiancee around the house and grocery shop on the weekends.

So, health team, I need you to know that I struggle with anxiety and depression, despite the fact that my seizures are much better controlled. I need to opt out of things last minute if I am feeling exhausted. I am doing my absolute best, but sometimes that means combating the depression or anxiety that looms over my head on a regular basis.  Just because the seizures are gone, there are still things that I need to work with. Don’t pity me, I just need you to know.  I am a chronic illness warrior, so I keep fighting the good fight.

Thank you for doing all of the amazing work that you do! I couldn’t get through it without all of you!!

Love,
Sita Gaia

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Sita Gaia VS. Exercise

Hey bb’s,

18268368_10154392609790776_7290771774937748565_nWoohoo it is almost summer! Finally done with the hybernating!
I have been feeling a bit down today but I had some errands around the house to do so I did them because I knew that would help. I have gone on and off being a couch potato as TV is one of the major things that calm my stress and anxiety. I remember coming home from high school in Grade 12 and Oprah was on and i felt my stress melt away as I stretched out on the couch.
In university I went to the gym 5 days a week and did Zumba on Monday nights and sometimes even Sunday mornings! I was a bit of a gym rat, and going to the gym relaxed my stress from school and relationship issues. At 21, it became difficult to go to the gym due to my uncontrolled seizures and decided that yoga would ultimately be my workout. I love yoga, but I missed that satisfaction of a sweaty workout.

Today I was looking at the photos that I put up, and one of them was of just me that my friend took in my other friend’s Jeep See above.. We were all headed to the beach and I looked so happy. “What happened to that Sita Gaia?!” I asked out loud. I quickly decided to actually use my fitness clothes that were sitting there, and I popped on my headphones and snapback. Let me tell you: running after a long time was hard and I am sure I was huffing and puffing but that’s okay! I came home and since it was SO hot out, I pointed the oscillating fan in front of me as I did more full body exercises. I feel more like myself now and my low mood has been replaced with serotonin. It’s fucking fantastic! Sure, I won’t be able to do this everyday, but this is literally a step in the right direction!!

Love,
Sita & Jojo

Carrying a Stack of teacups through life

teacups-stacked2What it’s like to have a life that’s stacked like those vintage teacups that get passed down from generation to generation. I sit in Sabina’s office, one of the many counselors I have seen, but she gets me the most. I know she met her husband in Japan and has a daughter who has “special needs” because she’s cool like that. I gotta Other counselors wrap themselves up so tightly that you think you might be looking at a ghost.
I sit on the left side of the couch, because I can never switch things up. She has a tiny box on the couch-side table with sand and a teensy rake. Apparently it helps?
I say Sabina “I never know where I will be from second to second. I feel great but then that stack comes crashing down and I face plant”. She nods thoughtfully. “That must be very frustrating to have no idea when things are going to change”. She sits across from me in her office chair, but she always looks relaxed. Sita, they were trained to be relaxed. Duh. You know that. I look at the ground. “Uh yeah it’s scary. It’s hard to talk about but I can’t be a recluse”. “You’re doing a great job Sita.” Just like those teacups. I think to myself. They never break. Their strength in history makes them stronger. I’m not sure- I never studied history. I studied a dumber version for students with learning disabilities. What do I know about history? All I know is that the past is the past, although right now can change. I force myself outside, all the while bringing those cups with me. Who knows what will happen? Without living, who knows? I have learned that. Moving through life with stacked teacups is tiring, but I gotta do what I gotta do.

Have You Fallen Into the Depression Trap?

Halle-f*ing-luah! I made it out of the house! I have been struggling a lot with depression again as it has decided to loom it’s ugly head.
If you have never had any depressive episodes, first of all knock on wood immediately. In my talking with my mental health crap, everyone experiences it very differently.
my shoes.jpg
My depression is like a wet towel. It’s not cold, but very heavy. I mean, have you ever tried carrying around a sopping wet towel? Not too comfortable. At the same time, I don’t feel super happy or sad. I just can’t really feel anything. Ask me to meet you somewhere last minute? Forget it. It is very hard carrying my body around- and I think people feel this regardless of their weight.

My depression is a bit of a trickster. It tells me that no one likes me, and someone is ignoring me on purpose. It tells me I am alone, when in fact I have an amazing fiancee who works her ass off, parents who couldn’t be more supportive, and a brother who lends support from afar. I have friends who check in with me, and cousins I can talk to, plus extended family.

My friend Ty has been through the same stuff as I am going through, and when I was struggling to put on my shoes he said “I always know that I’ll feel better when I leave”. A mantra that I used in university popped into my head “I’ve done it before so I can do it again”. Like that, I managed to pop my feet into my ever so stylish if Kate Spade and Keds had a baby shoes, and grabbed the keys.  Oh My GOD! I made it! I probably sat there on the couch for ten minutes trying to decide whether to go out. I wanted the stimulation of other people being around, so naturally doing my writing in a coffee shop seemed ideal.

The world was a bit grey and gloomy out, but I was so proud to walk down the street. I just knew I wasn’t able to lie on the couch the rest of the day. (Even though my fiancee offered to get my blister pack, I wanted to take that task out of her day).

I know this will pass, and since I have been there before I know that for sure. So if you’re struggling, try and see a doctor (even a walk-in clinic) if you are able, and try to challenge yourself to what seems like the biggest barrier.

5 Things You Never Knew About PNES

Hey friends! How are you? I have been off the radar a little bit because I have been sick with episodes and PNES. Don’t know what PNES is? Be prepared to find out!

1. PNES stands for Psychogenic Non Epileptic Seizures. Across the globe people disagree what to call it- but in North America it is called PNES.

2. PNES is triggered by traumatic events, similarly that PTSD is. These traumatic events can range from childhood to adulthood. In my case I believe it is having serious epileptic episodes that have caused PNES.

3. PNES episodes look like seizures, although they are not coming from the brain. They look like seizures, although are more like a panic attack. When I had my most recent episode, I had a very stressful meeting, and then after I headed to the pharmacy to pick up my prescription. There are a few steps leading into the store, so on one of the steps I “felt weird” and immediately sat down. I started to breathe evenly, because I knew it was PNES. This part is spotty, but I remember gasping for air and my fiance was torn up beside me. I was getting very hot in my Winter jacket, but couldn’t say anything. I also wanted someone to call 911, but again thankfully that was taken care of. I was grasping for words when I could finally start talking, but it was really slow.

4. 20-30% of people with epilepsy have PNES. I remember being so mad when I was diagnosed with it! Not only did I have to deal with seizures, but these weird trauma seizures as well!

5.  It is challenging to treat PNES. For me, I use regular meditation and deep breathing.
According to http://www.epilepsy.com, “For some patients with psychogenic non epileptic seizures, the seizures are a manifestation of trauma, which is also known as Post Traumatic Stress Disorder (PTSD). In order to treat patients with PTSD, the clinician has to take the seizure apart to see what the seizure represents in terms of emotions and memory as well as where this trauma is stored in the body,” Some people use Eye Movement Desensitization and Reprocessing to help their PNES.

Essentially, these days I am working through my PNES. I am super frustrated that my seizures just started to get under control and the PNES is popping up all over the place.

bigstock-Woman-Depressed-Series-27249164.jpg

Love,
Sita & Jojo

Dear Diary: Confessions of a Millenial

Hey bb’s,

20180204_155752.jpghave run into a problem recently and I feel it needs to be addressed.

I was talking to my mom on the phone today, and she said it was fine that I quit doing something that I was pursuing. But here’s the thing: Why did I need HER permission to do something?

First of all, I am a 27 year old woman. Why do I need to ask permission to do something in life? I feel as though we need to hear  voices of others before we proceed in life. (This is not everyone, but I have noticed it in life). Why do I need permission to take a self care day? To not go to something I was invited to? My friend pointed out that it has to being good, being a woman, and to not trust yourself.

This is stunting us from becoming adults here! Especially as an individual with a disability, I need to be an adult so I can advocate for myself. My parents aren’t going to be around for me forever, and my partner can’t be there for me at every beck and call.

If we constantly ask for permission for something that we need to do, there is going to be an entire generation of people running around needing permission to make the next move in their lives.  I am not saying every person in the Millennial generation is like this, but I feel that it is prevalent!  When I was a teen, and still sometimes today, I will sit down with myself and give myself pep talks. When I was 17, I sat myself down in my room and said”okay, go away for university. All of your friends are leaving. It is better to have left then be left”. What happened to me giving MYSELF permission?!

I am going to work on it…if it’s an issue for you too, work on it with me too.

Peace.

Love,

Sita & Jojo

Dear Universe: My Body Makes Me Sad

Dear Universe,

I know that when sometimes people are stressed, they emotional eat. Sometimes when I am stressed and overwhelmed I can’t even see my body. And I mean SEE it.
Sometimes I drink cups and cups of coffee to help me stay awake and so I won’t feel hunger. Hunger is an awful feeling. Don’t worry, I don’t have an eating disorder. Please don’t worry about that. I still eat. Food is delicious when T makes it.

So I was good and scheduled an appointment with my psychologist. He sat patiently and listened. He said I need to work on it. I agreed. It is an issue. Sometimes I don’t like being touched. Even a hug. That needs improvement. I am working on it universe, I swear. The other day I wrote words all over my stomach. That area is the most sensitive part of me. I still listen to all the hollywood bullshit that we are bombarded with on a daily basis.
I wrote BEAUTY, STRONG, PERFECT, LOVE, and RADIANT all over my upper torso. It helped, Universe.  It helped a lot. I am in charge. Not images that I am bombarded with.
Universe,  I follow all of these amazing body positive people. They inspire me. I want to be like them. Like “Hey this is me I don’t give a shit what you think”. They speak better than that, but you know what I mean.

Universe I am tired. I need to sleep. I am tired of putting out my own personal fires. It’s too much. I think I will be better. This will get better.

Love,
Sita & Jojo

A Blog about Living a Whole Life With Epilepsy