Wednesday, July 19, 2017
Very tired...
So, two steps forward, three steps back. Yay. I've had bad reactions to the medications that have been tried. Was allergic to one, the other messed me up pretty bad. Lots of stress at home as you could imagine. So a minor fuss this morning saw me leaving my home after my doctor appointment and I'm staying somewhere else right now. I really don't feel like going into it all...but I just needed to get something out so it would stop running about my brain. I'm tired, it's really the only thing I can think of. I tired of it all. I want just a little peace and quiet, just a little bit of luck or karma or whatever to go my way. I have no idea what is going to happen. I feel like nearly 18 years of my life just went down the toilet. I don't regret my decision, I think it was the right one to lessen the stress on all. I'm just not sure what will happen going forward, but I am going forward. I'm not staying stuck anymore, not staying in the same place. I am afraid that this is going to be the most painful decision I've ever made in my life...I really am. But most of all today, I'm just really tired.
Tuesday, June 13, 2017
A diagnosis...finally
So, if you have followed this blog through the years...you are very aware of my journey and that this is my outlet for all the anger/hate/crying/frustration/feeling good/hopeful, etc thoughts and such. It can be a lot to take in, I know.
You also know that around 20 years ago I was diagnosed with a mental illness and it kept getting renamed/re-diagnosed. First it was schizo-effective, then schizophrenia, then bipolar, then major depression with psychosis, then well...we don't really know but take these drugs...and so on and so forth for 20 years.
So, after living in Kentucky and then coming home, I got a {bit} ill about the doctors just wanting to shove medications that never worked in me and I quit ALL of my doctors. I found a new family doctor and a new psychologist...we talked, a lot. We went over my history, a lot. They both asked "have you ever seen a neurologist?" in the same week. No, I had not. So, off I went to a neurologist. I saw her, after a few months of waiting to get in. (really, the wait was not as bad as it could have been) and my psychologist put me on a low dose of anti seizure meds while I waited to get in.
So, I go in, she has all my paperwork from my 2 new doctors (who have run every test under the sun) and she schedules a MRI of the brain and an EEG. I go and have them done a few weeks later, in the morning and 2 hours later I get a phone call from her office. Yeah, I'm having near constant seizures and please take X amount of medicine and come back in a month.
Yep....one test....that's all it took. 20 years of take these pills and we'll see what happens and all it took was a 2 hour test to show that...no, I don't have schizophrenia or bipolar, I have a seizure disorder. I was happy. I know that sounds crazy, but listen, I have been pumped full of drugs that did nothing but make me worse for a very long time. Finally....an answer. A result that could be seen...not guessing....not hey, let's see what this does. No, it's there...it's real...it can be treated. I was a little teary eyed.
I've learned a lot since then. We are still trying to get the seizures under control, I can't drive until January as of right now. I will get another EEG around September and maybe it will be clear and I can drive after Jan...if not...well, we'll work on that then. Now, my family knows that when I suddenly act drunk or say nonsense things or act odd, I am having a seizure and that I won't remember it and that I am going to sleep for several hours after. Then I will wake up and we will go on. At least now they know why that happens. It's a lot to take in, even if I am happy to finally know what's going on. It's sometimes overwhelming, because before I had no idea what was going on around me, I had no awareness. Now, I can see what is happening, even if I can't control it and that is both comforting and scary.
Sometimes I want to go back to the familiar world of gray and fog...just because it's familiar and I don't have to face reality. Reality being I may not ever get to drive again...and that limits my freedom. Most of the time I'm just finally happy to know that, while I have tons of issues that were CAUSED by psych docs who were supposed to be helping me, I am going to be ok in the end. My doctors now are good, and are hesitant to give me any medication without the ok of my neurologist...so I see that as a big step in a good direction. Sometimes part of me wants to sue the heck out of them...because I could and I have that right and now that I am finally on medications that are correct for my diagnosis, I can actually SEE that they did not even check to see if they were treating the right thing. They assumed that my symptoms meant I had a mental illness...none of them listened to the key things that told them it was not mental, but neurological. I am profoundly thankful for 2 doctors who did listen and caught the phrase, "I smell things that are not there. I have olfactory hallucinations"...turns out this is NOT a symptom of mental illness, it is a marker of neurological disease.
All in all, I'm happy to know what is wrong with my brain, even if it scares the hell out of me most of the time.
You also know that around 20 years ago I was diagnosed with a mental illness and it kept getting renamed/re-diagnosed. First it was schizo-effective, then schizophrenia, then bipolar, then major depression with psychosis, then well...we don't really know but take these drugs...and so on and so forth for 20 years.
So, after living in Kentucky and then coming home, I got a {bit} ill about the doctors just wanting to shove medications that never worked in me and I quit ALL of my doctors. I found a new family doctor and a new psychologist...we talked, a lot. We went over my history, a lot. They both asked "have you ever seen a neurologist?" in the same week. No, I had not. So, off I went to a neurologist. I saw her, after a few months of waiting to get in. (really, the wait was not as bad as it could have been) and my psychologist put me on a low dose of anti seizure meds while I waited to get in.
So, I go in, she has all my paperwork from my 2 new doctors (who have run every test under the sun) and she schedules a MRI of the brain and an EEG. I go and have them done a few weeks later, in the morning and 2 hours later I get a phone call from her office. Yeah, I'm having near constant seizures and please take X amount of medicine and come back in a month.
Yep....one test....that's all it took. 20 years of take these pills and we'll see what happens and all it took was a 2 hour test to show that...no, I don't have schizophrenia or bipolar, I have a seizure disorder. I was happy. I know that sounds crazy, but listen, I have been pumped full of drugs that did nothing but make me worse for a very long time. Finally....an answer. A result that could be seen...not guessing....not hey, let's see what this does. No, it's there...it's real...it can be treated. I was a little teary eyed.
I've learned a lot since then. We are still trying to get the seizures under control, I can't drive until January as of right now. I will get another EEG around September and maybe it will be clear and I can drive after Jan...if not...well, we'll work on that then. Now, my family knows that when I suddenly act drunk or say nonsense things or act odd, I am having a seizure and that I won't remember it and that I am going to sleep for several hours after. Then I will wake up and we will go on. At least now they know why that happens. It's a lot to take in, even if I am happy to finally know what's going on. It's sometimes overwhelming, because before I had no idea what was going on around me, I had no awareness. Now, I can see what is happening, even if I can't control it and that is both comforting and scary.
Sometimes I want to go back to the familiar world of gray and fog...just because it's familiar and I don't have to face reality. Reality being I may not ever get to drive again...and that limits my freedom. Most of the time I'm just finally happy to know that, while I have tons of issues that were CAUSED by psych docs who were supposed to be helping me, I am going to be ok in the end. My doctors now are good, and are hesitant to give me any medication without the ok of my neurologist...so I see that as a big step in a good direction. Sometimes part of me wants to sue the heck out of them...because I could and I have that right and now that I am finally on medications that are correct for my diagnosis, I can actually SEE that they did not even check to see if they were treating the right thing. They assumed that my symptoms meant I had a mental illness...none of them listened to the key things that told them it was not mental, but neurological. I am profoundly thankful for 2 doctors who did listen and caught the phrase, "I smell things that are not there. I have olfactory hallucinations"...turns out this is NOT a symptom of mental illness, it is a marker of neurological disease.
All in all, I'm happy to know what is wrong with my brain, even if it scares the hell out of me most of the time.
Tuesday, March 21, 2017
Therapy Session 1
So, I mentioned last time that I had changed. That is very true. In the time I've spent away from my blog, I've almost become a different person in more than one aspect. I've learned a few new things, had somethings reinforced and changed my views on quite a lot. There is nothing like working for a "mission" to give you a good cold dose of reality. I have come to the conclusion that the modern day church is nothing more than a false prophet. A pit of vipers if you will. Now, this certainly does not go for every single church out there...that would be silly. No, I mean as a collective the church of today is not concerned with helping people so much as building large buildings, holding fancy ceremonies, and making sure they look really good to actually help anyone. In the past 4 years it has been my unfortunate experience that the church really like my talents and my willingness to help others...and those churches have exploited it, in one case coming close to actually killing me. (No, that is not an exaggeration...medically I was in quite a pickle...it was not good.)
These "organizations" loved that I had a big heart, I could sing, I was good with kids, I could do photography and such. They loved it so much they constantly asked me to do all sorts of things, far more than should have been asked. And, in one case, while they were busy taking from me...they actually wanted me to pay them money...even though other volunteers were given discounts and such for their work...I was not. Yeah. Go figure.
You see....somewhere a few thousand years ago this guy went around and he tried to get people to be nice to each other and help each other. That was what I wanted to do...help, because in my own life I had felt helpless. I was a sucker. And I'm sure you can see I am still not happy about it...but this is what the blog is for. It's here for me to work through this and find my way back to me. The me I want to be.
I've seen that "churches" will use the threat of hell over and over again...fear mongering. At this point in my life I have no fear of hell. There was a time when I did, but after living through what I have, hell is here on earth. I don't fear anything that might happen after I'm dead. It the things that can happen while I'm alive that bother me. However, it is very easy to keep your sheep in place if you constantly remind them that they will be damned for doing bad things...things that you say are bad. Because, folks, if you didn't know...those people lie. Don't believe me...READ IT FOR YOURSELF. Seriously, get the big book of everything and read it. If it is not mentioned over and over and on a consistent basis...yeah...that's not damnable offense. You see the book also has this dude's words in red...so it is really easy to see what he said. Most of the crap that people say he said was important...yeah...he didn't say it. In fact, those people don't know that because they didn't read it either, they relied on what someone else told them. Yeah...no. If you want to work out what you believe...don't listen to anything a human tells you...including me...go and research and find it out for yourself.
Ok...I'm a little worn after this first one...so I'm gonna go now. I've gotten this poison out of my system and now I need to take time to step back and evaluate. I'm sure there will be more to come.
Ta for now...
These "organizations" loved that I had a big heart, I could sing, I was good with kids, I could do photography and such. They loved it so much they constantly asked me to do all sorts of things, far more than should have been asked. And, in one case, while they were busy taking from me...they actually wanted me to pay them money...even though other volunteers were given discounts and such for their work...I was not. Yeah. Go figure.
You see....somewhere a few thousand years ago this guy went around and he tried to get people to be nice to each other and help each other. That was what I wanted to do...help, because in my own life I had felt helpless. I was a sucker. And I'm sure you can see I am still not happy about it...but this is what the blog is for. It's here for me to work through this and find my way back to me. The me I want to be.
I've seen that "churches" will use the threat of hell over and over again...fear mongering. At this point in my life I have no fear of hell. There was a time when I did, but after living through what I have, hell is here on earth. I don't fear anything that might happen after I'm dead. It the things that can happen while I'm alive that bother me. However, it is very easy to keep your sheep in place if you constantly remind them that they will be damned for doing bad things...things that you say are bad. Because, folks, if you didn't know...those people lie. Don't believe me...READ IT FOR YOURSELF. Seriously, get the big book of everything and read it. If it is not mentioned over and over and on a consistent basis...yeah...that's not damnable offense. You see the book also has this dude's words in red...so it is really easy to see what he said. Most of the crap that people say he said was important...yeah...he didn't say it. In fact, those people don't know that because they didn't read it either, they relied on what someone else told them. Yeah...no. If you want to work out what you believe...don't listen to anything a human tells you...including me...go and research and find it out for yourself.
Ok...I'm a little worn after this first one...so I'm gonna go now. I've gotten this poison out of my system and now I need to take time to step back and evaluate. I'm sure there will be more to come.
Ta for now...
Friday, March 10, 2017
Another Long Absence and Interesting News
Hello all, a lot has happened since I last posted, but it's time for an update. As you know, or maybe not if you are visiting this blog for the first time, this is where I started sharing my journey through life so many years ago. At times I have posted quite often and at times posts have been few and far in between. It's just how life goes. After so long, I feel the need to use this tool to help me through some things again, and maybe it might help others who are also out in the world.
I won't lie, sometimes things on this blog get rough and real. I may cuss, I may say things you don't like or believe, that's why there is a warning before you read the blog. This is my personal journey, my personal feelings. This is a place where I can let it out, say what I want and such. It's a good therapy tool to help me clear my head and make sense of things when I can't see them clearly at all. It's all that and nothing more. I share this simply because I've lived this life and know that others may find a sense of not being alone by reading it, as I have often found when I read things from others. It's nice to know that you are not the only one in life who feels a given way or that sometimes other people have situations like the one you may find yourself in.
Since I am bringing it back, I will (of course) be doing a bit of housekeeping and redesigning, if you've read before you will not be surprised...I like pretty things. And also glitter.
Just to get the bare bones out of the way:
I no longer live in Kentucky. I am now back home in Alabama and that journey is still very painful for me. I have a lot of lingering issues over it and I'm sure I'll address it in due time. I have recently found out that my diagnosis of several mental illnesses was likely wrong and it is highly possible that for my entire life I have had a seizure disorder, again, I will address this in coming posts. I have also learned some painful lessons that you will see reflected here on the "religious" aspect of life. More on that later too.
So, to recap, I've moved, my entire life has been turned upside down and nothing is in any way remotely the same as it was before. I hope that anyone reading this blog will find that they are not alone and that hope can be found in the funniest places, but it may be dark for a while...for as I've said...things have been bad. TTFN and I'll see you later.
I won't lie, sometimes things on this blog get rough and real. I may cuss, I may say things you don't like or believe, that's why there is a warning before you read the blog. This is my personal journey, my personal feelings. This is a place where I can let it out, say what I want and such. It's a good therapy tool to help me clear my head and make sense of things when I can't see them clearly at all. It's all that and nothing more. I share this simply because I've lived this life and know that others may find a sense of not being alone by reading it, as I have often found when I read things from others. It's nice to know that you are not the only one in life who feels a given way or that sometimes other people have situations like the one you may find yourself in.
Since I am bringing it back, I will (of course) be doing a bit of housekeeping and redesigning, if you've read before you will not be surprised...I like pretty things. And also glitter.
Just to get the bare bones out of the way:
I no longer live in Kentucky. I am now back home in Alabama and that journey is still very painful for me. I have a lot of lingering issues over it and I'm sure I'll address it in due time. I have recently found out that my diagnosis of several mental illnesses was likely wrong and it is highly possible that for my entire life I have had a seizure disorder, again, I will address this in coming posts. I have also learned some painful lessons that you will see reflected here on the "religious" aspect of life. More on that later too.
So, to recap, I've moved, my entire life has been turned upside down and nothing is in any way remotely the same as it was before. I hope that anyone reading this blog will find that they are not alone and that hope can be found in the funniest places, but it may be dark for a while...for as I've said...things have been bad. TTFN and I'll see you later.
Tuesday, April 28, 2015
Cardinal Singers Tour
Well, I'm back from a world wind adventure with the Cardinal Singers! We had a blast! We went to Missouri, Kansas, Arkansas, Mississippi and Tennessee. Those kids put on amazing performances every stop! Even though we had some kids who got sick, they never slacked a bit...I'm so proud of them!
I met a lot of great people, spent time with a lot of my fav kiddos, and saw some wonderful places. I am so glad Mark allowed me to go with them on this tour. It was such a blessing. These kids are living out their faith everyday and none of them are afraid to proclaim the name of Jesus! It just adds to the the blessings I get from being allowed to be here at Red Bird. I am so thankful to be here, so thankful to be working with the adults and kids who call Red Bird home. It's more than I ever dreamed. I am truly blessed!
I met a lot of great people, spent time with a lot of my fav kiddos, and saw some wonderful places. I am so glad Mark allowed me to go with them on this tour. It was such a blessing. These kids are living out their faith everyday and none of them are afraid to proclaim the name of Jesus! It just adds to the the blessings I get from being allowed to be here at Red Bird. I am so thankful to be here, so thankful to be working with the adults and kids who call Red Bird home. It's more than I ever dreamed. I am truly blessed!
Tuesday, March 31, 2015
Ready to go
I am ready to be in Alabama for a bit! We are leaving after school tomorrow and I am watching the clock, trying to make it go faster. That is the hardest thing for me, being away from my parents. If I could get them to move up here with me, I totally would. Other than that it's great.
We have had a visit from our good friend Laurie and her kids...and that has been awesome! It's been so good to hang out with them and just have some time together. I'm looking forward to the summer when we will get to see them more!
I guess that is it...I just wanted to whine about how much I miss my mom and da...bye!
We have had a visit from our good friend Laurie and her kids...and that has been awesome! It's been so good to hang out with them and just have some time together. I'm looking forward to the summer when we will get to see them more!
I guess that is it...I just wanted to whine about how much I miss my mom and da...bye!
Thursday, March 26, 2015
I took some time off...
2 years off, to be exact. No biggie. I've had various projects on and off, but it's time to get back to basics. This blog has chronicled my struggle with mental illness along with various other things in my life, and that will remain true. In this blog I will continue to speak truthfully and openly, that is why you see an "adult content" warning on my blog. Sometimes life gets real and I try to stay real right along with it. So welcome back to my reality.
What's happened in the past 2 years? Last I left I was back in church, I was still human, etc. I'm still human, still in church...and living in a different state. Yeah, I typed that. Chris finished his math degree and less than 4 months later we were living in Kentucky. Sometimes life happens very fast. Chris works for Red Bird Christian School, teaching math and science for the 7th and 8th grade. I volunteer at the school and do whatever they ask me to. I've adopted a large number of kids or maybe they've adopted me...either way.
I miss my parents like crazy, but I know we are where we are meant to be and that helps a lot. I've made a lot of new friends up here. I'm trying to wrap my head around this sport with the hoop and the round ball that they play up here...it's strange. I live in quite possibly the prettiest place on earth, right inside the Daniel Boone National Forest. On a clear night I can see every star in the sky, I can hear every frog nearby. I live 30 minutes away from the nearest town. It's 20 minutes from my house to the nearest gas station. I love it. We live on campus at the mission and the kids have friends to hang out with and a safe place to be. Have I mentioned I love it here? Well, I do.
Well, that's my I've been missing forever and now I'm back post...hope you enjoyed it!
What's happened in the past 2 years? Last I left I was back in church, I was still human, etc. I'm still human, still in church...and living in a different state. Yeah, I typed that. Chris finished his math degree and less than 4 months later we were living in Kentucky. Sometimes life happens very fast. Chris works for Red Bird Christian School, teaching math and science for the 7th and 8th grade. I volunteer at the school and do whatever they ask me to. I've adopted a large number of kids or maybe they've adopted me...either way.
I miss my parents like crazy, but I know we are where we are meant to be and that helps a lot. I've made a lot of new friends up here. I'm trying to wrap my head around this sport with the hoop and the round ball that they play up here...it's strange. I live in quite possibly the prettiest place on earth, right inside the Daniel Boone National Forest. On a clear night I can see every star in the sky, I can hear every frog nearby. I live 30 minutes away from the nearest town. It's 20 minutes from my house to the nearest gas station. I love it. We live on campus at the mission and the kids have friends to hang out with and a safe place to be. Have I mentioned I love it here? Well, I do.
Well, that's my I've been missing forever and now I'm back post...hope you enjoyed it!
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