Sunday, February 22, 2015

2.18.15

that's when i wanted to write this post - on my 25 years and 10 months "birthday"...

but that didn't happen.

it was such an odd day knowing that in two months i'll be 26. and what is 26? i wish it was only a number, but it's a number that means things, such as getting off parents' insurance. ya, that's really a big one for me because i haven't known what i'm going to do. obviously get my own plan but that can be expensive. my parents have been working on this - because if it were up to just me i'm pretty sure i'd end up in inpatient again - and found that i can stay on the plan if i'm "physically or mentally disabled." 

this has been so hard to have in writing that i am physically disabled. the attacks of paralysis are disabling but what is debilitating is the fatigue i experience on a daily basis. there are no words for how worn out i am. sometimes i literally shower and work for a few hours and then fall asleep. it is very disheartening to function at such a low capacity.

never in a million years could i have guessed my life would be like this at an age where i feel like so many of my peers are working in careers, dating, getting married, starting families, buying homes and cars, etc etc. all the grown up things. it has been my experience that life trials come at unexpected and inconvenient times.

i could sit here for hours and write of the life i wish i had. but in the end it would do me no good and get me no further in accepting the life i have. 

in dbt there is a formula for 'suffering.' everyone will experience pain in their life.

but pain + the refusal to accept reality on reality's terms = suffering.

pain is inevitable. suffering is optional.

there have been times in my life of both great pain and suffering. i will be the first to admit that i do not always choose to accept reality because it hurts. but i add to my discomfort when i don't accept what is.

surely god looks down on me - his daughter - with compassionate, loving eyes, knowing my pains, sorrows, and sufferings. 

he alone has brought me to this.

he alone will get me through this.

"lost no more"
by greg olsen

Sunday, February 15, 2015

valentine's day 2015

this is how i initially felt about valentine's day this year :::


but, we covered a section in group about accepting reality as it is, because reality has causes, and we can't change the outcome of events. knowing that this was the skill i was supposed to work on leading up to valentine's day, i decided to practice radically accepting that i would be single on valentine's day AND not be angry about it, wish it away, or think my life should be different.

it took a lot of opposite action. at first i didn't want to do anything, i just wanted to feel sorry for myself. but in the end, that doesn't help me feel better. the thought quietly entered my mind that instead of viewing valentine's day as one for people "in love" i could view it as one "to love others." and that changed everything!

i decided to send out valentine's to people who i knew loved me, who might be feeling alone on this day, and to the special people in my life who make it worth living. that was a big step for me.

i also did a cope ahead where i planned what i would do that day to not wallow in sadness. i didn't want to be a third wheel on my parents' date so i decided i would buy myself flowers, get my nails done, order some chinese food, and watch a funny romantic comedy (just friends, 27 dresses, life as we know it, the killers, etc). i would be by myself but i wouldn't be unhappy. it would be a good day for me.

after i had made my plans my incredible friend c texted me and asked me if i wanted to be her valentine! i was so excited! her and her husband were celebrating early and so we made plans to go out to a yummy italian dinner and go see night at the museum at the dollar theater. best. plans. ever.

 
i did my hair and make-up (i know, fancy!) and we had an amazing time talking and laughing about life. it's so nice to have someone you can talk to about the serious and not so serious parts of life with.


my dad got me these cute owl glasses and chocolate :) my mom got me a sugar cookie and dove chocolate :) i got cards from my aunts with prizes in them - a new owl necklace, a gift card to panera bread, and a flower i don't have to water -- all of that = winning! i felt such love and connection to people on that day. i bought c some flowers and was going to buy myself some, but when my dad realized that's what i wanted he paid for mine :) he said, "i didn't know that's what you wanted or else i would've gotten you that." he also gave me money for dinner and said, "if a father can't treat his daughter to a valentine's dinner, what good is he?" i think that will stick with me forever. 


i felt love, connection, peace, hope, and so many other positive emotions on valentine's day. in previous years it was a day i have dreaded, but making it not about me but others really changed the whole day for me. that, and god providing a way to shower me with love.

i realized that though i am single on valentine's day, i am not alone. and those two things are HUGE differences. there are so many people who are alone day in and day out. i have family, friends, extended family, and even strangers who love and pray for me. what more could i possibly ask for on a day of love then to feel connected to them?

one more realization hit me as dad and i were standing in line to get the flowers -- he can't read my mind. i just assumed he would know to get me flowers because i love them so much, but i don't think i've ever told him that. one of the dbt skills that i made up :) is ask for what you need. i needed flowers on valentine's day. but i didn't ask for them. luckily i had a back up plan so i wouldn't feel resentment in not getting them, but looking to the future it will be more skillful when i express what i need in advance so my parents, siblings, friends, and maybe one day spouse will not have to guess blindly at what i'm thinking.


it was a day of love and learning.

Wednesday, February 4, 2015

my life IS my miracle

this is a post i have been thinking a lot about but haven't actually wanted to sit down and compose. which is strange for me since writing usually brings me clarity.

i guess i haven't wanted to write it because then i would have to look at the painful events in my life again - but this time with an eye of faith.

i have wanted a miracle in my life ever since i began having attacks back in november of 2010. in my church a person can get priesthood blessings and i have been told many things in these blessings over the years including, "you will not be held back physically, mentally, emotionally, or in your career for serving a mission," "you will be healed," "there will be doctors willing to take an interest in your case and help you," and other powerful phrases that have stayed with me.

as i look at my life currently, i just don't see how those promises from heavenly father can possibly be right. i am fatigued all the time. sleep 12+ hours a day. can't take my walks anymore because they bring on attacks. have not worked in my career field for 2 years. have many dr appts each week. keep having tests come back 'normal' yet still struggle with symptoms of something. 

i tend to focus on this - the negatives. the things that have gone SO FAR from right, according to me, in my life.

but when i take a step back and look, really look, at my life, i would be terribly wrong if i didn't admit that though my miracle isn't coming as quickly as i have hoped, my life IS my miracle.

let's walk through a timeline.

- normal birth despite having forceps used - i could've ended up with brain damage but i didn't.

- good childhood with loving parents, two sisters and a brother.

- a move to texas when i was 10 from virginia which brought many blessings i would see later down the road, such as better and cheaper schools and better/closer health care.

- 11/12 my first realizations of anxiety. i didn't get help for it at this time. i cried - like break down sob-fest - almost every day from the pressures i felt mounting.

- started attending the community college at 15. became sick with stomach issues which were addressed a few years later - all related to the anixety.

- started connecting with a few people and having friends - something i had been praying for for a long time.

- graduated from the community college with an associates of arts at age 18 and attended the university of texas at dallas in richardson where i knew i wanted to be a speech therapist and got into that program.

- met my dear friend s at al's house and would later use her as a contact to get a job and then we became just incredible friends.

- graduated from utd at 20 and started working right away with s for 10 months before deciding to leave on a mission for my church.

- served 6.5 months on my mission and came home due to my first attack, continuing attacks, and no one really knowing what to do with me. honorably released from my mission.

- saw a neurologist who said my symptoms were psychological so i went and saw my first psychiatrist who helped me begin to manage my anxiety, depression, and attacks (to some degree).

- began counseling (saw 2 before i met susan) and attended group therapy which i never thought i'd do in my lifetime. 

- got to go visit mamaw and say goodbye before she passed.

- struggled with anger and depression but was able to move out a year later into my own apartment - which was a dream come true for me.

- worked and lived for 13 months on my own until i became so depressed i was suicidal.

- had my first inpatient hospital stay in march 2013.

- all during this time the attacks never stopped but would ease up for a time and i would only have one every few months.

- moved home with my parents and started working with susan in dbt therapy - a HUGE blessing as she is one of the top dbt therapists in the country and works here in dallas.

- started working again, this time as a nanny in october for family friends and added to that in june of 2014 with another family.

- had a really bad time with attacks in november of 2013 and was referred to a new psychiatrist who told me from the start he did not think my attacks are psychological but neurological. made an appt to see a special neurologist in january 2014.

- saw the new neurologist and got some relief from the attacks - back to going months in-between instead of days. struggled a lot with depression, suicidal ideation, anxiety, and learning how to think dbt (as in a whole new way).

- was ok and starting to make real gains in my life in august of 2014, beginning to think about a career change and going back to work more full time, maybe going back to school, putting my resume out there, etc. taking more steps towards independence.

- november 2014 i came crashing down and started having daily attacks. my neurologist didn't follow up with additional care plans after a normal eeg so i had to start thinking about where to take my medical concerns.

- we decided i should go to ut southwestern but i couldn't get an appt until september of 2015. we scheduled it anyway and prayed.

- i wrote my first suicide note in december 2014 and went inpatient again, this time at ut southwestern. they witnessed my attacks and were the first ones to put the name 'periodic paralysis' with what i was experiencing. i was able to get in to see a neurologist december 23rd instead of next september.

- i had an emg which came back normal - but that usually happens with PP patients early on because there is no nerve damage to show abnormalities. the dr there dismissed my case saying i don't have PP and i have been struggling with depression since.

- next step is a sleep study and then if ut southwestern doesn't have any answers for me we are going to a bigger hospital - mayo in az or johns hopkins.

now - what does this timeline have to do with my unfolding miracle? go back to when i was first experiencing anxiety at age 11/12. if i had been treated then i don't know if i would've been as driven and determined. starting college at 15 was a huge blessing for me because i was able to have a bachelor degree before going on a mission. i also had no debt from school because my mom taught us to save 80% of what we earned since we were little and getting birthday money. i was able to work and get some experience there before leaving for my mission. i got to serve and love the people of tempe az for 6.5 months. i learned so much about myself. my first attack happened in a very safe environment. i came home to immediate medical help. i was able to persevere through drowning depression for a year and a half on my own before i had susan's help. i was able to buy a good car that i love and pay cash so i haven't had a car payment. owning my own car has been another dream of mine realized. i didn't take action and kill myself the first time i went inpatient. going there led me to chloe who led me to susan. chloe began the process of saving my life and susan has carried it on. i have become stronger and wiser through dbt and love my time in individual and group sessions - even though they can be incredibly hard. my new psychiatrist has believed in me from the start and is on my team to get me care and coordinate my care. when my attacks started up again in november of 2014 my mom was there to drive me places and help me still work and get to appts. writing the suicide note - though i didn't realize this in the moment - gave me an in to ut southwestern and i was able to see them and start doing tests MONTHS ahead of my scheduled appt. i have had insurance through all of this to pay for the thousands of dollars of care i have needed. i have made permanent and life long friends through all of this too many to count and most whose names start with the same letter! (s, a, c, st, a, a, j - and many MANY more)

if my life had gone according to my plan with the trials i would experience, i would've been in grad school for my first attack, possibly bringing harm to myself and children; somewhere in there i would've gotten married without him or myself knowing the full extent of my physical problems; i would've been pregnant going inpatient for the first time and had to watch my spouse suffer during those days as i did not do well; i would've had a baby at a time when i was starting a new therapy - both of which needed all of my attention; i would've felt more guilt at trying to get help, care for my spouse and child, wanting to work - and not being able to do it all; i would've had an 18 month-ish old going into the hospital for the second time, leaving my spouse with so much more responsibility; and i wouldn't be able to care for the child or my spouse with these attacks that leave me fatigued, exhausted, and sleepy.

it is really for the best that i have had to do this on my own - and by that i mean with an INCREDIBLE support system of loving family and friends who pray for me daily - but not someone i am in an intimate relationship with. to bring all of this into a marriage might have destroyed it.

as i reflect, i see how little by little my dreams have been fulfilled. i've proved to myself i can live on my own. i own a car. i have true, life long friends. those are some of the bigger dreams i never thought would come true. one day - maybe many years from now, but one day - i'll look back and see a marriage, a baby or two, a house, someone who can work, really, the woman of my dreams.

i'm building her and creating her each day i live my life and recognize that it is my miracle.


i am no longer in search of a great, grand miracle (though i wouldn't pass it up if it came :), but rather, i'm focused on 'daily bread.' the daily tender mercies of a loving heavenly father that get me through each moment.

'daily bread' d. todd christofferson
 
my motto for 2015 is :

“You can’t choose your trials in life, but you can choose how you deal with them.  You can choose to become better or bitter.”