Thursday, April 30, 2015

that's a pain in my ass

that's right - i said it - and i'm going to say it again - THAT'S A PAIN IN MY ASS!!!

i'm currently experience pains in my ass that are making me cry.

i have burn marks on my skin from the heart monitor electrode pads i was allergic to - and the forced continued use of different but still bothersome electrode pads. the itching and burning is steadily driving me mad.

that's a pain in my ass.

i had to have an awful exam at the obgyn today that was SUPER invasive.

that's a pain in my ass.

i'm fat - i need to loose weight - i'm fat. simple as that. in fact one of my 'diagnoses' is 'overweight.' huzzah - i've always dreamed of that word staring back at me from a piece of paper given to me by the doctor. i look at myself and see an ugly, fat girl with no future.

that's a pain in my ass.

i haven't accomplished anything of note in 5 years.

that's a pain in my ass.

i have to be poked again tomorrow - i don't know how many times.

that's a pain in my ass.

i see a very long future of me being a patient - one who no one gets and doesn't know why things happen to me - and i hate that.

that's a pain in my ass.

i don't communicate well when i'm angry which causes a snowball of problems.

that's a pain in my ass.

i serve no great purpose in life. i'm just here. if i were gone it wouldn't matter.

that's a pain in my ass.

i go paralyzed every week or so for 30 ish minutes. i wish so badly that i could blackout during those times and escape into the sweet bliss of nothing. but no, i have to be alert on the inside and unresponsive on the outside. i hear everything, see everything, feel everything, but can respond to none of it.

that's a pain in my ass.

i have to email my dr about more tests to be done.

that's a pain in my ass.

i can't figure out the ______ registration sticker for cars now and am pretty sure i'm going to have to pay another renewal fee which pisses me off.

that's a pain in my ass.

i am an unappealing - ugly - useless - unworthy - incapable -unimportant human.

and that's a pain in my ass.

Friday, April 24, 2015

pain produces empathy

for a long time - at the very beginning of "all of this" back in 2010 when my attacks started - i wanted to be a patient. i wanted lots of tests done and monitors on me and all sorts of things so that we could figure out what was wrong with me, get me all fixed up, and then i could move on with my life.

if you have been a reader for all or most of my journey, you know that THAT is not the way things went. i had a few tests done in 2010 to rule out rare things - nothing appeared to be wrong with me neurologically so the conclusion was it must be psychological.

for the next 2 1/2 years i was treated for my attacks by a psychiatrist. there were blessings in this, in that i got help for anxiety/depression, but at no time did the attacks stop permanently. when i had one the questions would be "what were you worried/stressed/anxious about?" the questions were psychologically driven because a psychological problem is what i had.

then i changed psychiatrists and my new one said, this is not psychological but neurological. back to a neurologist i went. he gave some good help but when my attacks started increasing he didn't assist. 

through what can only be looked back on as a miracle, god got me into utsouthwestern 9 months before their first available appointment. since then, i have had excellent doctors who agree, this is neurological - but are ruling everything else out to make sure it's periodic paralysis. they coordinate their efforts and are very efficient.

i am now a patient. a patient i wished to be 4 years and 5 months ago. and now, i don't want to be a patient.

because when you're a patient, there will be pain. i have had more blood work drawn in the past 5 months then i believe i have in my entire life combined. i have had an ecg, eeg, emg, mri, sleep study, heart monitor holter, and soon emu all in the past 5 months - and those appointments aren't including regular dr visits and obgyn for pcos + 2 x's weekly therapy. it's incredible to me to look at my schedule and see appt after appt after appt after appt.

all of these things have been uncomfortable. i am allergic to latex and sometimes get stuck with latex-ie products - so i get a rash. i've had more gunk in my hair then i ever thought i would. sticky patches and being stuck with needles = all not fun. the heart monitor i'm currently hooked up to is itchy and the electrodes don't stay on so i have to tape them on - it's quite the process. 

being a patient is hard. it's exhausting and scary. you want tests to come back normal but you also hope they don't so at least SOMETHING will be wrong and you can get help for it.

why am i writing all of this? to say that i am gaining a greater appreciation for parents, children, adults who have more medical conditions than i do. their suffering is not over looked by god who sees all. when i am paralyzed i think of people with sma or als and how frustrated they must feel. at least i know in 20 minutes to 2 hours i'll have movement back. when my neck is frozen in an uncomfortable position i think of people in the hospital who cannot move themselves and how grateful i am when someone finally reads my mind and props my head up differently. when the electrodes and tape are itching/burning my skin i think of children/adults who have to be taped up on a regular basis and how irritated their skin must be. when i am getting an mri done i think of how grateful i am that i get to leave the hospital and don't have to stay. i think many people in there would be grateful  to be well enough to leave. when i pick up my meds i think of the many people who would give anything to not feel depressed or anxious, but don't have the funds to get that help. i am grateful for parents who provide health insurance for me. when i can't drive for 5+ months until i am cleared by a doctor i think of those who can never drive and who must always rely on someone else for a ride.

yes my life is uncomfortable and not where i imagined it would be. yes i have pity parties. yes being a patient is hard. but i would be a fool not to realize the amazing blessings that have and are coming my way.

things may not be the way i wanted or expected, but it's all going to be alright.

Sunday, April 19, 2015

growing older

my friend said to me the other day that she has gotten attached to her age in the past year. it hit me then that i've grown attached to my (now old) age - 25.

i have been psyching myself up for turning 26 for two months. i didn't feel like i was attached to 25 until it up and changed on me. now i'm missing it. 25 - not yet on the downward slope to 30 - a good quarter of a century mark - a nice place to just stay.

but that's the problem with living - if i'm going to live - i'm going to age.

my sister s said two brilliant things to me - one three years ago and the other just yesterday. "How I wish you could see yourself as I see you! Why you would be smitten with you!" she's such a doll and always looks at me through the lenses of love. "I'm sure you're freaking out about another birthday and being old, so I would suggest that you be like the owls and not give a hoot about age! Instead focus on the wisdom you've gained from another year of precious life." life is precious. there have been many times in the past year where i didn't want to be alive - i thought it wouldn't matter one way or the other to those in my life if i simply disappeared - but when you are loved, you are noticed, when you are there and when you are not.

a year ago yesterday, s was here, making cupcakes with me. we went out to eat that night. i was horribly sick from the metformin. over the course of 8 months i lost 40 pounds and when the paralysis attacks started up again and i became inactive i gained most of it back - that is a super hard thing for me to deal with. i went inpatient again in december. i started getting all of my medical care down at utsouthwestern. i have had multiple tests done, more blood drawn since november than i have in my entire life, and more doctor appts than i ever thought i would need. i have heard the voices of self-hate and self-doubt haunt me through the night. i've had nightmares for weeks every time i close my eyes. my hair has changed colors multiple times. i haven't driven in 5 months. life is no where near what i thought it would be - no where. but i have learned a few things too.

even if i hate hard things, i can do them with the support of family, friends, and strangers praying for me. i can choose to be skillful or not when i feel overwhelming emotions. i have a better relationship with my brother. little things bring me joy. big things bring me joy. 99% of the time when i'm feeling a certain way, there is a good reason for it. i am finally beginning to believe what friends/family have told me for years: i am precious/i am loved/i am worth it. lots of people are counting on me to overcome the physical trials in my life and are excited to see the person i become because of them. i am empathetic. i understand what many do not as it relates to mental ailments and more recently physical ones. i can be healed. god has that power and i believe he will heal me. i am grateful that not all prayers are answered - because i've prayed to die. my parents are heros/troopers/champions. every day i live is one day closer to when i won't be a patient but will be normal. god is with me.

for now, i have to take my life a day at a time and not think too much about how i'm going to get out of where i am or how far i've fallen from where i was. i am where i am. that's all there is to it.

like the song goes - it's just another day in paradise.

Friday, April 10, 2015

painful experiences

in spite of my neglect, my blog has still had visitors - so i thank you, dear readers, for checking on my journey.

i remain in a slump of uninspired-ness. march came and went without me even writing that it was my two year mark of going inpatient for the first time. i did write about mamaw on the day she passed. and then before i knew it, it was april. with it comes my birthday and mamaw's birthday. i'll write more about both on another day.

it is currently 1:12am and i can't sleep. i have taken an ativan to help with anxiety and did my new dbt practice that susan gave me which helped maybe 5-10%. when i look at the things i'm worried about - the things that cause me anxiety and keep me up at night - it can really be summed up in two categories: money and doctor appointments.

i'm not working in my career and am bringing in little money that mostly needs to be saved to pay the taxes on the little money i make. mercifully my parents are paying for my medical expenses which with increased insurance rates are many thousands of dollars. the things i'm worried about are under 100 dollars, but when you work as much as you physically can and it doesn't bring in that much, any amount looks like too much.

and doctor appointments. i am BLESSED to have gotten into the ut southwestern system sooner than september of this year, but it means longer car rides to multiple appointments each week. i'm still not allowed to drive - major sad face - so mom and i have to match up our calendars each week so that she can take me where i need to go. please, don't think i'm not grateful. i would literally be begging for rides without her, but at the age of almost 26 it does come as an embarrassment to me to have my mom  drive me around. and all of these appointments seem useless - tests come back normal. i feel like a lab rat being poked and prodded with the end result being 'normal.' luckily my doctors are still working with me because they know something is wrong, but the waiting and the poking and the hoping, it gets me down sometimes. i swear i've had more blood drawn since november 2014 than i have in the rest of my life combined. almost every dr i see wants to 'do some labs' and i'm all 'get in line!'

in dbt we talk about being willful and willing. i have been feeling SUPER willful today and it's lasted into well this morning. i can just feel myself screaming NOOOOOO and wanting a break. i want to be alone and not be afraid that something will happen. i want to drive and not be afraid that something will happen. i want to take a solo plane trip out to see friends and not be afraid that something will happen. my body is unpredictable. but i don't want to do one more damn thing to figure out what is wrong with it. i just want it fixed/healed/done. i feel like i'm at the end of my rope - the rope is twisting and fraying and i'm holding on with both hands praying it won't snap but perhaps secretly hoping it will so this can all be over.

i guess with the coming of my birthday i'm realizing - once again - how far i am from where i want to be. i may be developing qualities of who i want to be but if i could ask god just one question it would be, "isn't there another way?" this process is painful. and as always, i'm tired. not the i've worked 14 hours straight and am about to crash tired, but the tired that comes from an unrelenting trial that seems to have no end in sight.

yes, there's a light at the end of my tunnel, but tonight i'm convinced it's the oncoming train...