Thursday, April 26, 2012

Lena, my Beautiful

We saw a new pediatrician today. One in adolescent care. She started some blood work on Lena and some X-rays. Lena already has signs of scoliosis. The blood work is to check her basic metabolic functions. Lena has so many of the signs of Mito. But to hear a doctor say and agree that we need to start testing, it's scary. I love my daughter more than life and I don't want her in the same everyday pain that Alex and I deal with. I want to save her from that, to give her something better. and the sad part is, her dad won't acknowledge that there is something physically wrong with his daughter.
In the end though, she will always be my Beautiful. Perfect in every way.

Wednesday, April 25, 2012

Boys field trip to SeaWorld

the boys had a class field trip to SeaWorld San Antonio today. they enjoyed themselves, got to pet see dolphins up close, alex fed a seal, and they just had an in general educational experience. it times like this though that i remember just how eager and fragile alex can be. even though i took his wheelchair, and he spent a good portion of time in it (mixed with a little running around) he left exhausted. he fell asleep on the bus ride home, i put him in the car still asleep, he slept all the way home, and all the way up until i think 5 or so. just plain exhausted. donovan was just as tired as the other kids, but alex... it just reminds me how fragile he is. i don't know how we are going to make it through a week at Disney World, in the middle of june. we will really need to pace ourselves, that's for sure. class is about to start, gonna cut this short for now... later y'all.

Monday, April 23, 2012

on being BiPolar and seeing Blue October

i spent an emotional roller coaster ride this weekend. so many ups and a few lows. but the ups are what get me. seeing Blue October was one of the greatest moments of my life, but the crash from that a few days later is killer. i wasn't getting enough mood control on my cut back dose of med so called the doctor and taking a risk on the side effects, went back up to the regular dose. damned if i do, damned if i don't. a friend asked me to describe what it is like being BiPolar. its hard to describe, especially when you throw in the effects of also being Schizo-affective. i know this is bit much for some of you, but it makes me feel better to let others know. to know what?, some may ask. to know that i'm not crazy, that i don't ask this way just to be a bitch or to be immature. and yes, these are names that i have been called, among others.
years ago, a question was asked by a non-bipolar forum goer to the bipolars on the forum. "What's it like to be bipolar?" and it got me to really thinking. i tried to answer her question as best as i could and still keep it short, cause as most of y'all may know, i can chatter. but i feel as if enough wasn't said.

being bipolar is more than just having the constant mood-swings, the endless ups and downs. it used to be called Manic-Depressive Disorder, but i don't think that really emcompasses it all. i feel like it leaves something out, so calling it Bipolar Disorder really is a better term. you feel like two people, Jekyll and Hyde. Hot one minute and cold the next. Generally up today and down tomorrow, happy now and pissed off at nothing before the time changes on the clock. your thoughts constantly racing, never really settling on one particiular thing. i wrote a story that took me 2 years, i couldn't stay focused on it for very long, i could see the images in my mind but i couldn't get them down on paper fast enough before they were gone. even your sleep cycles are erratic. you stay up sometimes 2 or 3 days and then sleep a full 24 hours before you are up again. for some, the mental torture doesn't end there. the schizo-affective kicks in and you have to deal with the hallucinations and or voices. personally, i don't have a lot hallucinations, thankfully. i'm fucked up enough.
i am an ultra-ultra rapid cycler. what does that mean? in short, my moods and thoughts can cycle as fast as an MP3 player on shuffle. for the most part, the mood changes go relativley unnoticed, but sometimes they can be severe. Stress usually makes these changes worse. Stressors or triggers cause these often horrific eipsodes. i could literally be laughing and then bam!, like lightning, screaming, throwing the phone and storming out of the house to take a drive. its crazy, i feel like i'm crazy. nuts. psycho. bonkers. but they tell me i'm ok, i'm not the worst thing out there. i'm lucky. i've never done drugs, alcohol, smoked. never been institutionalized. i'm doing really good. i just don't feel like it sometimes. sometomes i wish they could lock me away and throw away the key. i get tired of hurting those closest to me. and do you know how expensive gas in my truck gets? my poor cell phone, Goddess Bless OtterBox. lol
no one can ever truely know what it is like to be in the mind of a Bipolar person. i remember being a teen, and my parents asking me if i was on drugs. they told they were concerned because i showed the signs of someone on drugs. whatever that means. turns out, i was in the beginning stages of Bipolarism, which usually manifests in the mid to late teens, often as late as the early twenties.
i am truly lucky and blessed by the Goddess, though. to have such a wonderful family and friends that have stayed by me through it all. my mom loved me no matter what, my ex would hold be till the rage passed, my husband now cradles me till the crying is over and the crash has faded. my kids...my poor kids. to see their mom happy one minute and angry the next. they will need therapy later in life :( medication helps, it makes the thoughts slow down and the voices go away. helps the moods to stabize, a lot. i can almost function like a normal human. i miss the peace of my childhood. the craziest thing though, is that Bipolar people don't tolerate change, for the most part. and it seems that's all our lives are full of, change. changing from one mood to the next in a minute. flipping thoughts like old men flip channels on the TV. change, constant change.
so Saturday was really o roller coaster. i couldn't keep up with myself at times. i wanted to meet Blue October, to at least get close to them, but the fear was so great it almost choked me. but somehow i over came that and was able to get my autographs. i cried as a walked away, more from being so proud of my self than anything. by the grace of the Goddess, i was also able to get front row seats to see them. another plus, but on the flip side, all those people up there. but i made it through. i sang, i screamed, and jumped up and down. it was great. 
Sunday morning, i crashed. i didn't even want to get a shower, much less crawl out of bed. Damien and i ended up in fight over a puppy, it was insane. something as mundane as a puppy. 
but i'm home now, trying to restablize. my social worker is trying to help me learn new and better coping skills. and all i can say is good luck. both to me and to her. and that story i wrote, as soon as i get done with it, and turn it in for my creative writing class assignment, i might post it here.
i hope this has given some of you a little more insight into the mind of a Bipolar person...

later y'all....

Friday, April 20, 2012

Secrets

I shouldn't have to live in secret because some people. It's wrong. I should be able to post whatever I want on facebook. So, I have unfriended those that make my life difficult. I will probably end getting yelled at or at the least in an argument with those involved, but it's my life and that of my family and I should be able to keep my friends posted on the happenings in my life. What little free time I get. By the way, I'm in Houston, having a lovely dinner with my husband and brother-in-law. Going to my concert tomorrow and will keep everyone posted on all the great fun I have. I'll probably crash late Sunday or not even get up on Monday, but it will be worth it.

Wednesday, April 18, 2012

April 18, 2012: just rambles

i sometimes wonder why i bother with somethings. went on a field trip today with my Foodservice IT class. we reviewed a great POS (point-of-sale) system for a restaurant, but my gripe was i wasted gas to go there when we could have easily reviewed it and several other systems online. granted it was at a food/restaurant supply convention here in San Anto, but we got there at 3 and it shut down at 4. not cool. and then, this morning i realized when i got to school, i didn't have a portable hard drive, my notebooks for class, or my earbuds. why did i bother getting out of bed. then i find out i was supposed to be in uniform for the field trip. not a cool day. lol... but at least i have my concert to look forward to on Saturday. leaving for Houston on Friday, so i'm so gonna skip class :) 
alex and donovan have science projects due tomorrow, and alex just doesn't get it. mom says he doesn't understand the timer that they are using, he doesn't get that you have to wait for it to go off. i worry about alex being able to get though school, to understand some of the higher functioning concepts. he understands math right now and does really well with reading, he has a little difficult with spelling some of the trickier words, like music and daddy, and some of the bigger words like father. but he does eventually learn them, just takes a little extra work. he is loving is new AlphaSmart writer. we are slowly learning how to use it. 
i'm actually sitting here in between classes while i type this today. my semester ends june 15th, but i stuck with a dilemma. my kids have asked me to take the summer semester off to spend time with them and take them to the zoo and stuff. stuff we missed doing last summer. but i am afraid that if i take off the semester, i won't have the get-up-and-go to go back in the fall. and i am so close to finishing. and my dad is coming down to visit this summer, and i don't want to say "sorry, i can't spend time with you because i have class". that would suck. i did contact my adviser to see if she can help or if she has any suggestions.
well, almost time for class, so gonna cut this off and pack, then head to class.

big smiles and Blessed Be everyone :)

Sunday, April 15, 2012

Wow, the stuff you find when cleaning

as i had said before, i printed out my old blog and have been reading over it the last few days. and wow, some of the things i was going through, many of which i will prolly never post about again. but it just reminds me of how we change, grow and overcome obstacles with time. how we can heal, forget and yes, in time forgive ourselves for mistakes. i cherish my family and my friends. i'm not afraid to tell others of my tribulations, in hope that it will help them to heal and maybe find their own path.  i did find an old story that i wrote that i am thinking about using for my Creative Writing class. it needs some work, but i think its perfect. its the best piece i have ever written. besides, it would be nice to shock my class lol... they think i am so meek, quiet and boring. people need to be awakened every now and then. :) i was confused, angry,and resentful. but since having Alex, i have come to accept things better, knowing that somethings aren't my fault and that if we look deep enough inside, we can find our own inner peace. i work with my doctors now to maintain the optimal health for me, both mentally and physically. i'm rattling now, so i'll cut this one short and chat later... but i will leave you with one of my poems:

i wrote this one for my Dad but it still rings true about some of the things Alex has taught me.

Lessons In Life
you taught me how to live and how to love
you taught me how to make mistakes and to learn from them
you taught me how to have fun
you taught me about dedication and perseverance
you taught me about the quality of life, not the quantity
you taught me that i could over come anything, that i was a survivor
you taught me how to fix the car and mow the lawn
you taught me how to live with no regrets
you taught me how to give others my happiness
you taught me the value of friendship
you taught me how to be a parent, the best parent
you taught me mercy
you taught me how to laugh, even at the worst of times
you taught me how to fish
you taught me how to be generous
you taught me to not take life too seriously
you taught me the best ways to pick on mom
you taught me how to LIVE!!
i love you, dad... and i miss you, dad.


Friday, April 13, 2012

Alex's roller coaster

this is the last post i made on my old blog. i think it still rings true for me, even more than 2 years later. i originally posted this on January 25, 2010:



there are always ups and downs with being a parent. a never-ending and wonderful roller coaster ride. 
there is something i should have told the world before now, but was too afraid. i was wallowing in my own grief. my Alexander roller coaster has hit a nauseating loop-de-loop. We have known for some time that Alex had some form of muscular dystrophy. (for those of you that don't understand, that makes him one of Jerry's kids, look it up). until recently though, we didn't know what type. we were soo wishing for something mild, but that was not what we got. granted it could always be much worse than it is, it is still a hard pill to swallow. we found out in november that Alex has a form of mytochondrial myopathy called mitochondrial encephalomyopathy. basically it means that his little body can't make the energy it needs to grow and repair. to date we have seen several different types of specialist and had numerous tests run. He has a heart murmur with a leaky valve, micro siezures, weak muscles, and neuropothy in his legs.
all of this has been rough on us. we sit and wonder some days if we should plan for college or if we should put that money aside to pay for other expenses. Alex is so full of life and love. so much joy. but then roller coaster goes down in a dip and we are faced with the sorrow that no parent should be forced to faced. the possibility of losing a child too early. it is not a matter if Alex has full-blown siezures, but when will they come. it is not a matter of if Alex will ever be in a wheelchair, but when will the day come. we ponder how soon will the gods take his shining face away from us. how long do we truly have with him?
 
granted i have 3 other children that gods willing i will get to see grow-up, but i wanted to have that joy with all of my children. i wanted 4 proms, 4 graduations, 4 trials through Junior high, and 4 weddings, 4 sets of braces, and the list could just go on.
 
i remember growing up, and that other kids would pick on jerry's kids, and i never understood why. to this day i still do not. now my son is one of them, and it hurts me to the core when someone makes a comment about the disabled and being one of Jerry's kids. now my son does ride the short bus. i am failing to see the humor. many short-sighted and narrow-minded morons do not stop to see the pain that surrounds those children. the physical pain that they feel and the emotional pain that their families go through.
 
i want to give him everything now. i want to give him the world today. i want to take him to Disneyland. i want him to run and play and jump. i cherish every drawing he makes. i'm sick of crying, i'm sick of crying alone.
 
i keep getting asked by various professionls if i blame myself. no, i don't. there is no one to blame. it is simply fate. and that is ok.
 
signing off, will blog more later.....

as i reread this, i was more than a little angry, but it is understandable. so many things in this original are the same, a few things have changed, and some predictions have come true... but we will continue to live, learn and grow.

Hello

its been a long time since i've sat down and written about life. so many things going on these days. school, Lil Alex, Damien (now retired), and the family in general. i will be posting a lot about Alex, some about Damien and his adjustment to retirement. there may be things here that bother or upset some, and for that i apologize, but my life is complicated. there will be some re-posting of some older blogs transferred from an old site, things that i think others can still use and enjoy. there will be stories, poetry, and memories. behind the screen, you can be assured that i am laughing, crying, smiling, or simply having a sad time of it. what started me on this renewed journey into posting is my creative writing class. the professor encourages us to write, usually random thoughts, in a journal everyday. but my thoughts are far from random. but i don't want my thoughts to hide in a notebook. i want to share them, they may give others hope, joy, or a sense that they are not alone. comments are welcome, the good, the bad, and sometimes the ugly. but i will not tolerate bullying, putting others or myself down, or just plain being rude. constructive criticism, please. well, i will keep this short, its time for class, but will start posting tonight or this weekend. happy reading and Blessed Be to all.