Well, so much for getting my meds correct!!! I was supposed to be on one that was 100mg in the morning and 100mg at night. I paid a shit load of money for this medication. Anyway they are 25mg each. I was putting 5 in the morn and night. No, Math has never been my strong suit, but no wonder why I been feeling like shit. So I admit that I don't always pay attention even when I should be. You think I would have learned this by now. Hell my mom has done laundry all her life and still messes up :) Anyway we all fuck up and this is my point. No one is perfect, disorder or not. So if your messed up embrace it don't try to hide it. No one is perfect as much as they seem to be, we all have demons! Take care
No loyalty among friends or...
Well, isn’t this ducky. Once again sitting going to make dinner and then plunk my ass down in front of the TV to watch “Supernatural” on Netflix! I just find it so hard to find friendsecially when I am not out in the work force. It makes it doubly hard to just sitting in a coffee shop with earphones on. I would not take time to write my journal/book. However I have not worked since I was 25 or 26 that’s 11 or 12 years. I don’t even have a solid resume, although I never really worked in an office so I don’t have the office experience. Anyway its always been a struggle for me no matter what friends or no friends I have. I mean I do have plans and have come far since a couple years ago, but that stupid Ego keeps telling me I am no good. There are many, many people much worse off then I am, yet I cannot see this. I was depressed last night when I started this, so I feel a little more optimistic. I still cannot shake this loneliness and feeling pathetic. I know its just a big fat lie my head is telling me. This is exactly my problem. It’s always been a shadow that follows me around. Depression and anxiety kill me sometimes, literally of course. I can get to this point where you cannot take it anymore. To a point I can understand the theory their brain tells them that no one would miss them, but by this time it is to late. I have fortunately never gotten to this point. Never planning how I am going to do it. I will be honest I have thought about it many, many times, but there are many people that would really miss me. They keep me pushing through the shitty life I feel I have. I look around and see my friends married and have girlfriends or baby(s) and I feel so alone. Maybe this is my destiny, I don’t fucking know. It’s a shitty one that’s for sure. I am sitting here in the coffee shop waiting to see my therapist, wondering if I should print this out and read it to her. I think I should!
Now I am back home, surprisingly more comfortable! The Irony there is ironic. It is a paradox to the way I should be feeling, but listening to my music and typing gives me a sense of peace,
Ok take my birthday week for example. It was the best birthday that I can remember in a long time. The only birthday’s that I really enjoyed was up north with fireworks and a barge we used to rent from a local person. This barge was huge, it would hold almost a full sized backhoe and a pile of steel. It held 50 people without even sinking a little.
The week was exhausting. By the weekend I was spent physically and emotionally.
I don’t expect to do something every night. My good friend is married and does things with their married couples. Well I am not married nor do I really want to, but do wish I had someone to come home too. I am envious of him, but I also don’t know how I would handle her making a shit more doe than me. Both of my cousins have had it rough. It seems to be a family trait. Pick a girl/woman that we can’t make the relationship work.
My dad was loyal for a long time, but he keeps everything in and I mean everything. I know they wouldn’t like me writing about them, but it was a very emotional time and feel it is very important to put in my book. Sorry guys, but it was a big part minus the epilepsy.
My dad had affair for I don’t know how long. My mom said it was since I was 16 years old. Now that I think about it. He would go visit her every six months or so and not just for lunch! Eventually it was almost everyday. I remember phoning him on his cell and he was always in the car and never home on time. Eventually my mom made him tell us, it was devastating. In my youth my naive eye’s put him on a pedestal. Now I know he is just human and has many, many faults. I see my parents and wish more for them. My mom should just fucking leave, but she lacks the courage. This is far from a judgment, because after 40 something years (living a good lifestyle) I wouldn’t want to leave. Having my father is an asset, sorry for using such a cold term, but he has a cold personality when it comes down to immediate family.
I have two beautiful nieces and it makes me sad to see how he really plays with them. He used to do that with me. Now of course, I don’t expect the same way had played, but it doesn’t matter. Those two are the joy of their life.
You how many times my dad has asked if it was ok if he was to drop by??? None, he would come over if I offered him to, but he wouldn’t if I never asked. He has seen my place once in seven years, seven years!!!
Now it is 50/50 part my fault part his. He just never thinks of these things. He has seen both my sisters places more then he has seen both my condo’s. Then again my sister has always invited them over and I don’t entertain well. I am happy just to let people do what they want. Most people don’t understand this concept. They think it is rude, but I make it very clear they are allowed to go into my fridge and grab a beer or just ask if they can have to something to eat. I don’t know if this is just me? It may be, but I have no problem to ask people if I can get another beer/wine or if they have something to eat. Again this is ironic. I find a lot of things I say is ironic. I have a very little social life, but if you were to plop me into a social setting I would manage fine. It is just getting there. That’s my issue, but a big one
Well, isn’t this ducky. Once again sitting going to make dinner and then plunk my ass down in front of the TV to watch “Supernatural” on Netflix! I just find it so hard to find friends now. Especially when I am not out in the work force. It makes it doubly hard to just sitting in a coffee shop with earphones on. I would not take time to write my journal/book. However I have not worked since I was 25 or 26 that’s 11 or 12 years. I don’t even have a a solid resume, although I never really worked in an office so I don’t have the office experience. Anyway its always been a struggle for me no matter what friends or no friends I have. I mean I do have plans and have come far since a couple years ago, but that stupid Ego keeps telling me I am no good. There are many, many people much worse off then I am, yet I cannot see this. I was depressed last night when I started this, so I feel a little more optimistic. I still cannot shake this loneliness and feeling pathetic. I know its just a big fat lie my head is telling me. This is exactly my problem. It’s always been a shadow that follows me around. Depression and anxiety kill me sometimes, literally of course. I can get to this point where you cannot take it anymore. To a point I can understand the theory their brain tells them that no one would miss them, but by this time it is to late. I have fortunately never gotten to this point. Never planning how I am going to do it. I will be honest I have thought about it many, many times, but there are many people that would really miss me. They keep me pushing through the shitty life I feel I have. I look around and see my friends married and have girlfriends or baby(s) and I feel so alone. Maybe this is my destiny, I don’t fucking know. It’s a shitty one that’s for sure. I am sitting here in the coffee shop waiting to see my therapist, wondering if I should print this out and read it to her.
We all have our demons and the good in us. We have to ignore the lies our mind tells us. Build it up the negative so you can burn it to the ground with positive feelings. I understand the irony in the title, however it is human nature to feel guilt and negativity. It's simply easier than to convince yourself that everything will be good, ok or fine. This is not just a blog for people that struggle with Epilepsy, but many other disorders and struggles.
That time of the day I truly struggle through is about 2pm to 4pm. My medication has a big part to play, why? It is a time when my medication is wearing off before I take my night time medication. I have no ambition to do anything, but retail therapy! Amazon.ca, because I am in Canada. The U.S has so much more then us.
I finished Jenny Lawson's first book yesterday. It made me sad, but also she had a pretty screwed up life. What I am getting at is that I am just grateful I never had to experience the dysfunctional family she has. However I am blessed! I know some of you are probably "FUCK YOU I was never raised right and how dare you rub you privileged life in my face" Basically I was given a lifestyle where I was raised the best my parents knew how. 2017 I turned 37, but struggled with this fucking disorder. So we never had financial struggles, but anyone who has money knows it doesn't do fuck all for your emotions and mental struggles! I am smothered by my parents and sister, they constantly want me to check that I got home alright. I supposed it would be worse if it was the reverse. It is perspective, just look around at our world and the disrepair it is in. Murders, natural disasters and politicians greedy and don't give a shit about the state our plant is in, because they will be dead when we have "Armageddon" so to speak. So fuck it, you are entitled to your opinion ab
I had a blood fasting test!!! Anyone that "NEEDS" medication knows just how shitty it is. I ate a banana and apple at six in the morning. My doctor took my blood as a non-fasting blood test!? I told him that I can't do a fasting bloyou od test, do the fact I "NEED" to take food with my medication! This is the ignorance of the individuals that don't need to worry about these things! All of you reading this epilepsy blog and struggles with your disorders understands these things. Anyway, will see what shows up in my blood without a fasting test. On top of that he was late and the clinic doesn't open till ten in the morning. For most people this is not a concern, just a hungry concern. Anyway that was my morning it totally fucked me for the day. On the bright side it was only the morning and I have dealt with much worse!
Signing off my Epilepsy Blog
Ok, this is at the moment post! My anxiety level keeps rising. I have Ativan for this and when my seizures get out of control. However it only does so much, the rest is up to me!
I feel I have to write, because most of my anxiety stems from me feeling like I have accomplished nothing, even though I have! It is a complete paradox. I hate feeling this way because I don't want to move all I want to do is curl up in a little ball and waste away. And for the essay companies or any other psych companies that hit my site. Don't say I need help and you can go to hell, because I am getting help. The irony about anyone saying this just makes me feel worse!!! So I don't need your advice so don't bother to comment and just because its on the web doesn't justify you giving me your opinion. There is a ton of shit out there that is way bigger then my little blog!!! Sorry for commenting on this. Anyway back to my anxiety I know most of you feel the same in one way People have said shit that don't need too. Life is not easy, I always ask the question "Why me" and most of you probably do as well. I am just frustrated because it all is related to my Epilepsy and the cocktail of medication I am on. So this is your up to date anxiety report
Oh my GOD, it was hell. My parents rented a Marriott Residence Inn for me. They were doing a double blind of this unknown KYP medication. I had to be on it with my other medication. That right there is a cocktail for a disaster.
This was a drug trial that was done at Johns Hopkins in Baltimore. They came in weekly blister packs and I was given a very simple method of keeping track of my seizures.
It was an “A to C” system. A, being a certain type of seizure and C the worst of my seizures A.K.A generalized, fall back smack my head off something and be disoriented for 20 to 30 minutes after. Sometimes I forgot to record those due to my disoriented nature.
We stayed in the Residence Inn because it was more of a very, very small condo
Marriott created these places for business people who had to stay somewhere for a month at a time.
My mom stayed with me for a month or so. I block some of it out, because it was such a terrible experience.
So I went on an unknown dosage of medication right away. It was ok in the beginning, but as weeks turned to months I just got more groggy and doped up. My speech was slurred.
After my mom left I had a television, but they removed the movie channels, so if a movie was on, I had to watch it at six pm or I would miss it.
Do you remember the movie “Live, Die, Repeat? Well I certainly repeated enough times to recite the movie. It came on right as I was making my dinner.
I don’t do regular television, it is boring for me and it doesn’t take up enough time in the night to make it to bedtime. I know it probably, well not probably, most definitely not a good thing to drink wine when I was on a trial, but I was so alone and tried of keeping this stupid schedule. My study took me into the winter there.
Baltimore is called the “Armpit of Maryland” I kid you not. Almost everywhere was dangerous. I remember being there just before my surgery and it had the highest crime rate per capita in all of the United States. Now Baltimore is not a big city compared to others, but that news was very pleasant to hear.
Honestly I don’t know how to be sarcastic as I write. Of course it was not pleasant at all. It was down right scary as shit!!!
(Anyway I will cover that when I cover my second surgery)
Back to me staying at the Residence Inn. After my mom left a couple nights later I hear two bangs, but nothing after that. I didn’t want to worry or investigate it at all. I went outside for my morning smoke. The Baltimore police were taping off the Seven Eleven right across the street. What I found out later is that I was just inside the downtown core and it was a very dangerous area. It was probably nicer back when the city wasn’t as violent. Well, that put an end to my wondering around pretty quickly.
We organized a caregiver, not that I “needed” one but more for company. It was like hiring a companion, but without the perks.
She did have a car so we went places. She was a very nice girl and we enjoyed our time, minus the perks.
I think I must have stayed a total of six to eight months, from hell. I had a bitch of a researcher. She was so cold and unfriendly. I can get away with calling her a bitch, because only five people now who I am talking about.
One night at the residence my insides decided not to co-operate, so it rejected everything inside me. I was severely overdosing. I ran to the washroom and threw up. Then I had the shits, “well isn’t that great” have the shit and now and on top of that, I have to throw up again. I aimed for the tub beside me and missed. Your are probably thinking this section is really gross and yes it is, but I am sure some of you have had this happen! Nonetheless I had the maids clean it. I apologized profusely telling them the reason.
GOING HOME AND BACK
After all this crappy insistent (no pun intended) I went home, but had to go back and give them the Bister packs every month it that was a trip and a half. At that time Air Canada was running propeller planes and the seats would barely fit me. The flight attendant went around and asked some people to move to balance out the plane. Well that gave me a lot of confidence, yeah right! Georgian Air purchased them and turned them into jet-propelled planes, which eliminated the need to balance out the place. I am thinking it is because they are more powerful!
At the end of one trial visit the bitch of a nurse asked us the stupidest question. “We ran out of his trial drug, do you mind returning next week”
WTF are you on crack, duh we live in Canada) It is a 700.00$ ticket and a hour and a half plane ride, or a nine hour drive.
The female dog (A.K.A bitch) was telling my mom this and she was probably thinking the same thing. I think she threatened to drop the study if she didn’t get them by tomorrow morning. My mom had to rush to Johns Hopkins and get a blister pack for one month. The research nurse was a total pain in the ass.
We did get the month’s worth of the blister pack the day we were head back home to Toronto.
After the trial
So I am home in Toronto ON. and the medication is still fucking me up and so I stopped the trial to go on Topamax. As I mentioned it really screwed me up. This was back in October right before Halloween. The E.R was a really haunted house .My sister was the only family close in proximity to me. I feel bad for my sister because I was totally out of it, but the E.R is not a place to visit on Halloween. It was scaring the shit out of me, let alone someone sober, like my sister. My sister handled the situation with grace, even though she was the only one to stay with me in the E.R.
She didn’t even take my nieces trick or treating my brother in law did. I feel grateful to have her in my life. I know I am repeating myself, but what the hell there will be content in my writing that I didn’t put in the other section.
In the E.R you have to let go of any dignity you have, because they don’t let you out of that bed for any reason. SOOOO you have to do all your bodily functions in front of everyone. I am sure they put something in your I.V bag to stone you. I don’t think I did mention it, but I disseize the E.R. It is the shittiest place to be, almost literally! I avoid going there at all costs. Anyway about two days later they took my to the neurology wing where I was put in the EMU, insert visual here (___________________)
I spent a week in the hospital being monitored for, probably the fifth time. I always go in there with a positive attitude, but it is the shittest ( I wish the stupid dictionary had swear words in it) experience. For those who have been in this situation knows exactly how it feels.
The worst type of seizure I have is when I fall backwards! So they labeled me as a fall hazard! So I had to call the nurse every time I wanted out of bed unless my family was there. Eventually I got so sick of holding my bodily functions I just got up. Yeah, I got in shit every time I did, but they never came in time.
It was really funny, because the night nurse was this tiny, but plump littlie Pilipino woman who probably couldn’t curl 15 pounds. Since I was on camera, they always knew when I got up, so they would call her. She would give me shit,
Honestly it was hard to take her seriously, because she was all of five foot four!
I was a little defiant that way, even they are responsible for my well being. They can be responsible for me if I do fall.
I was still really out of it though. My sister helped me sort my medication. I took whatever they gave me. Hell, it could have been vicotin and I wouldn’t have a clue. It might have been a good trip, but then again I have never taken it, honesty I had no clue what the fuck I was on. My sis saved me! She got a notebook and the pen that allows you to pick red, blue, green and black.
She called my Neurologist and nurse in Baltimore. I didn’t have a neurologist at Toronto Western hospital for at least ten years.
To be Continued
Hi and sorry to all that have found my site. I am in the middle of writing a book and have negated to address some of your input. It is difficult at times to put myself out in public, however I find that it helps quite a bit in the long run. My list of adventures, Not fun ones goes on for years. I did create this blog to help others understand that who ever suffers from any mental struggles can contact me. To be honest I have had a few very rough weeks. My birthday is coming up. I will be 38 years old and feel like a complete failure. I told my therapist this and we are going to revisit this she said. YEAH well I feel defeated and worthless right now. It is this reason why I say your not alone and this is the reason why I created this Epilepsy Blog, but its not just for individuals who suffer from Epilepsy that can relate. So I am very sorry for those who expected more from this and I hope that you revisit my blog. I have had a great deal of severe depression and anxiety lately and have had trouble bring myself to much more then write my book. Good health to all and I promise to do a better job. This is still new to me as well
I loved having our west coast family here. My cousins from there are great and it would help to add to the lack of family. I don’t know if I was fortunate to never have any real vivid and emotional attachments to my grandparents or not. I was born just after everyone had either passed on or was going to die. I personally have never experienced someone I really cared about dying!
Anyway I am at a coffee shop, the one I hate! I don’t know how I do! I am sad right now. Most of the time I don’t want to face the reality of the ones I love dying.
In a season from Netflix, one of the characters says, Passing on is just a polite way to say someone is dead. I agree with it to a point. Passing on, is someone (or thing) is dead. I feel that to mention “isn’t that guy dead?” is a little disrespectful. I know it is a tad hypocritical considering I don’t have an ounce of “God” in me