Wednesday, January 28, 2015

hope

hope. i heard an acronym for it once: Hold On Pain Ends. that's what i think of every time i hear the word hope. and i hope that the pains in my life really will end.

2 years ago a and i were at wal-mart shopping for plants. i found a lovely small palm tree that came with a rock in it that said 'hope.' i bought her and kept her name hope.

6 months after i bought her i stopped watering her. depression does interesting things and something i couldn't cope with was keeping up with my plants. they used to be my life in my apartment but all of them died because i stopped watering them - all of them except my cactus from my mission - and hope.

i was just planning on throwing hope away when she eventually gave up and died but time passed and she kept going. i didn't think much of it until sunday night when i had some energy. i decided to repot some beautiful shamrocks that a gave me that i let die (please pray that they grow) and i watered hope for the first time in a year and a half. 

the metaphor was not lost on me. i can't say i've ever lost hope in my life, but i have felt the severity of depression, which at times feels hopeless. it is hard. all that time, hope did not give up on me. it was there in my life - sometimes more in the background - at other times in the foreground - but always there.

taking it a step further, my relationship with hope has been like my relationship with god. there have been times when i've turned away and stopped allowing him to water me with love in our relationship. but he has stayed and waited on me. and each time i come back he welcomes me with loving arms.

on sunday night i trimmed hope and took off her dead leaves - surprisingly there were only a few - and gave her a good drink of water. i feel like that is what i am trying to do in my relationship with god. he's pruning, molding, shaping me but always there is water. as i turn to him instead of from him i will feel the effects of the water more fully.

family friends gave me beautiful daffodils that are growing. i now have 6 plants that rely on me for water. i feel in a much more able state to take care of them.

shamrocks (named irish), daffodils, cactus

i am fully reliant on god. he gives me water and nutrients i can get no where else. as i come to him, he eases my burden and gives me the hope to go on in the midst of trials.

 i am grateful for the lesson my little hope taught me.

Wednesday, January 21, 2015

of dreams and houses

i feel like it's been longer than the 9 days since i last wrote.

so much has been going on inside of me that i haven't had the words or energy to express it.

my energy is incredibly low. i texted s that it must be my lot in life to be tired. she responded, "it's your circumstance right now, but not your lot." i remember a time when i could run errands for a few hours, go to work, and come home and still be pleasant. now, if i can go one place each day i consider that a success, and i'm usually grumpy when i'm done. i was talking to susan the other day about how exhausted i am and she echoed s's words, that hopefully this will not be the rest of my life.

i miss my daily walks. i miss being able to drive myself places. i miss being able to visit friends. my world has become so small i feel. it could be argued that even in my small place i can change it. but part of me doesn't want to. i want it to disappear - go as if it never happened. because how can being like this shape me into the "woman of my dreams?"

since my sister s left for her mission in utah i have had a horrible time sleeping. i miss her like crazy and all the little things i told myself while she was here "you'll miss that when she's gone" i do miss. even the tiniest thing like her knocking on the wall we share between rooms makes me sad. we would pretend we knew morse code and knock until one came into the other's room. i miss her. she is my heart.

there have been many dreams where i have woken panicked. usually i don't recall dreams but these have stayed with me.

one happened a few days after s left. i don't play video games but that's the best way i can describe what was happening in the dream. it was like a video game. i kept expiring and it reset 3 times. i was in all black on a motorcycle (the badass-ness of that did not go without my notice :) and was being pursued by men in heavy black armor with guns, i had no protection. instead of bullets the guns had nails in them and i could feel them shooting me - all around my head and up and down my left side. i remember moving in that dream - responding to the pain because it felt real. as i talked to susan about this, she said it is probably linked to my paralysis attacks. i may have been in one that night and this was my body's way of telling me. also, i was under attack in the dream and trying to get away from it. that is me in real life - i have these attacks but i do everything in my power to prevent them. when the dream was over i had reached the end and destroyed what needed destroying. maybe that was to give me hope that this "affliction" will not be my forever.

that dream scared me so badly until susan and i had a chance to talk about it and work through it. another recurring dream is one of a house.

how i feel - empty and hollow

the first one was 2 nights after the attack dream. i was in a house and got up from the couch and began exploring it. i looked at all of the downstairs but would hit walls where i couldn't go any further. next i began walking upstairs. there i found people who gave me hurried information but it wasn't complete. then the dream reset and i started again, except this time i skipped the exploring and went straight for the information because i didn't know how much time i had in the dream. i got from the man "clemens, vermont." in the morning i googled it but there wasn't an actual place called that in vermont. susan and i did some chatting about this dream and she said for women a house usually represents self. susan said it was interesting that right at the time on my mission four years ago when i was exploring self and getting more information as to who i am i started having attacks - like a wall that blocked progress. once again back in august, september and october of last year i began thinking about how i wanted to approach the future. did i want to be a speech therapist assistant? should i go back to school? where should i work in the mean time? all of these questions about self and making my life better came and then i started having attacks again - i hit a wall and progress stopped. she asked me what association i have with the word clemens and it reminded me of clementines which brings to mind for me christmas filled with happiness. she mentioned samuel clemens (mark twain) who wrote about characters who were rebellious and how that might have some association with me and my hair or the choices i am making right now. she then asked me about vermont - what association did i have with that? it's a secret dream of mine to move there and open a bed and breakfast. susan brought up a possible conclusion that as i am exploring self and hitting walls i am still dreaming of better days and the future. all of this information was helpful for me so that i didn't feel threatened by the dream.

last night i had another house dream, except this time i was building it. i was putting in hardwood floor and intricate molding, unique doors. it was a one story with a basement that i decided to have finished. i remember calling my husband to handle some of the construction crews' questions but he couldn't make it before they had to leave, so i made the decisions. i also had two kids whose rooms i was building. when i woke up this morning it came clearly to me that i really am in construction mode in my life. my "self'' is torn up and i'm redoing a lot of what once was done (or so i thought). i have the hope of having a husband and a couple of kids one day. and i was building for them a safe place to be. i do not like this time in my life, but perhaps it really is preparing me for greater things.

me now

in the midst of my "inner construction" i see the amazing support of friends, family, and strangers who are watching out for me. my friends come over to my house to visit me. my family takes me places i need to go. strangers pray for me. i may not like where i am, but i can see the blessings and miracles taking place.

xo

"miss movin' on"

Monday, January 12, 2015

very awake

i'm up - and i so want to be asleep.

i've been really tired for years, especially once the depression hit, and now with the periodic paralysis i'm exhausted all. the. time.

but i haven't been able to sleep well or through the night ever since my little sister, s, left for utah on friday to serve her mission for our church.


i cried myself to sleep the first two nights and then have heavily medicated since then to try and numb my feelings and get the rest i need.

one of the problems with periodic paralysis for me (and many others i have read about) is if i don't get enough rest i'm more likely to have an attack.

i crawled into bed at 7 tonight and didn't fall asleep until 8:30 and was up at 9:30 and here it is 11:30 and i'm blogging because sleep is not coming.

i miss s so much. it was heart breaking to say goodbye.


because i have emotion dis-regulation i get easily overwhelmed with my feelings and sometimes don't know how to process them one at a time and problem solve what i'm really feeling verses added feelings to my original feeling.

if you've been a reader of mine for a while you'll remember the post where i broke all the glasses in my apartment because at that point in time i felt shattered and broken, like i could/would never be helped or healed.

i had a very strong urge to do that again. i was going to be alone for a while friday morning and they are just glasses so that was my plan. but in group therapy we are working on pros and cons. i did a quick one and realized that acting that way would alarm my family (parents), not bring s back, and only give me temporary relief.



soooo, i compromised with myself and said if i didn't break any glasses in the house i could get my hair done wild colors! i have been wanting pink in it for a while and i asked s the morning she left what her fav colors are and she said pink and teal, so those are the colors i got! for now, it's my way of having s with me - a reminder to me that we're still sisters and she'll be back next year - and i can make it through this.

my friend did it for me and i had a blast being with her and talking about how i'm feeling. 'hairapy' always helps.

these pictures do NOT do it justice. it's much more vibrant in person. it's also kind of my way to rebel and scream at the world.... i love it and figure if i'm going to rebel, hair is the best option because it can always be changed.





i'm grateful i'm part of a forever family and that s will always be my sister.

my favorite picture of us <3

Sunday, January 4, 2015

i'm fine...

... is my answer for the question "how are you doing?" every time.

i'm fine because i don't want people to cry.
i'm fine because i don't want others to worry.
i'm fine because i don't want you to know that the fall hurt.
i'm fine because i don't want people to feel bad for me.
i'm fine because i don't want attention for laying on the ground or sitting in a chair looking like i'm sleeping.
i'm fine because i don't want people to know how frustrated i am.
i'm fine because i don't want to talk about what is scaring me so badly i can't sleep.
i'm fine. i'm ok. a look, a shrug and a "is what it is right now" to try and put people's mind at ease.

because what we thought were seizures for the past 4 years are not.

i haven't been officially diagnosed but when i went to the hospital last month, they said i was presenting with many of the symptoms for periodic paralysis - where i literally go paralyzed from time to time.

roses from mom after i got out of the hospital <3

it's so much more than 'just being paralyzed.' i invite you to try this exercise.

get in as comfortable position as you can on the couch sitting up. set a timer for 20 minutes and start it. now, go limp. totally and completely limp. if you had your legs crossed they should be falling to the floor. your fingers should curl up a little. and most importantly your neck. it will either flop to the left, right, or straight down. now you can't move or speak for that whole time. you can swallow and blink, but your eyelids have lost muscle tone so most people will think your eyes are closed. your mouth will droop too. all through this you conscious, you can see/hear everything, and most importantly you can feel pain.

you'll start to notice pain in different places. your neck hurts. it is strained. ugh, you think, won't someone come move it for me because i can't move it myself. your feet and hands get cold. ooo, you've got an itch on your nose. then the feet cramps and muscle twitches start. you can't pull them out or tell someone about them so you sit there, praying it won't turn into a bad one. and about minute 19 you'll notice you really have to pee.

the timer went off. what did you do first? rub your neck? warm your hands? itch your nose? go pee?

this is what has been happening to me for the past 4 years. my first neurologist said "it's not neurological" hinting that it was psychological and that i needed to go see a psychiatrist to be treated for it. my psychiatrist gave me the diagnosis of conversion disorder (pseudo-seizures) basically where i was converting the anxiety/stress i felt into physical symptoms (not on purpose though) and those symptoms came out as seizure looking events. after about 3 years of little to some improvement i changed psychiatrists and the new one said it's not psychological/conversion disorder and referred me to a different neurologist. this neurologist got part of my diagnosis correct in saying what i have is a channelopathy (with drop attacks - where i loose all muscle tone and fall to the floor without warning) and that i have seizures deep in my brain that an eeg wouldn't pick up. i went on a treatment for that for 11 months with side effects and in november i started having daily attacks lasting from 10-20 minutes. with no answers from that neurologist as to why things were getting worse i went to ut southwestern for a few days and there they said i do not have seizures at all but that my sympotoms match a neuromuscular disorder called periodic paralysis.

i then had an appt with an epilepsy PA who kept saying "i'm so confused. your case is very confusing. i don't know what to do." tell me about it lady! luckily i had an attack while there and she got her neuromuscular colleague who did some tests on me during the attack (putting pressure on my fingernails with her fingers and then using a pen to push down really hard on my fingernails) to see if pain would bring me out of it (or probably more accurately to see if i was faking it). it. hurt. so. bad. i almost cried. i prayed so hard to come out of that one so i could tell her how much it hurt. i did come out of it and she seemed surprised to hear that it hurt me. just because i'm paralyzed doesn't mean i can't feel pain. all in all it was ok though because she gave instructions for further testing and said it does look like i have PP. (would love to take a pen to her fingernails but whatever...)

the most helpful resource i have found for beginning to understand this rare and confusing disorder is the periodic paralysis network, inc. the founder writes some amazing articles about PP. 

some of my triggers i've been able to identify so far are anxiety/any strong emotion, exercising (which really sucks because i need/want to do that...more on that in another post), stress (good or bad), fasting, and changes in the weather (like when it's cold, rainy, and dreary).

here are some good definitions of what PP is below:

"Periodic paralysis is a group of rare genetic diseases that lead to weakness or paralysis (rarely death) from common triggers such as cold, heat, high carbohydrate meals, not eating, stress or excitement and physical activity of any kind. The underlying mechanism of these diseases are malfunctions in the ion channels in skeletal muscle cell membranes that allow electrically charged ions to leak in or out of the muscle cell, causing the cell to depolarize and become unable to move (a channelopathy). Patients with this diagnosis will have periods of weakness that generally are felt to completely resolve, sometimes in a matter of hours." Mayo

"Periodic Paralysis (PP) is a rare, mineral metabolic disorder, called an ion channelopathy. It is generally inherited and characterized by episodes of muscular weakness or flaccid paralysis without the loss of sensation or consciousness. Dysfunction of the ion channels for potassium, sodium, or calcium is involved. Regular activities such as sleep, exercise, eating, and taking medications can trigger muscle paralysis. Episodes of muscle paralysis can be full body lasting minutes, hours or days. Permanent muscle weakness may occur over time. During periods of muscle paralysis a person may experience difficulty breathing, heart rate fluctuation and arrhythmia, blood pressure fluctuation, and choking. It can be life threatening. PP is often misdiagnosed and mistreated by medical professionals." from Periodic Paralysis Network, Inc

"Periodic Paralysis is an ion channelopathy also known as a mineral metabolic disorder. There are several forms of Periodic Paralysis, related to potassium. The potassium in each form causes paralysis in different ways for each type. The mechanism which causes the potassium problem is related to a different channel in the cells.

Hypokalemic Periodic Paralysis is a problem with the soduim, potassium or calcium channel
Hyperkalemic Periodic Paralysis is a problem with the sodium channel
Andersen-Tawil Syndrome is a problem with the potassium channel
Normokalemic Periodic Paralysis is a problem with the sodium or calcium channel
Paramyotonia Congenita is a problem with the sodium channel
Thyrotoxic Periodic Paralysis is a problem with the thyroid and potassium channel"


i am so scared to have this - and i am so scared to not have this, because then i have to keep searching for answers.

i ask for prayers a lot - but i really need them now. 

please pray for me as i try to get an accurate diagnosis and on a treatment plan that will help me return to living a 'normal' life.

xo