Sunshine

I remember a year and a half ago running into an old friend from high school and on the verge of tears because I was about to lose my job. The start of my illness in full swing trying to put behind me the horror I went through the summer before. Her life was going great, hot boyfriend, head of her sorority Delta Delta Delta. I'm worried I can't make it to my dance class because of my bout of narcolepsy coming on me making me more insecure. Embarrassed because I look flaky. vulnerable and lazy. I'm not that person although my past before college dictated that I was. My life was doomed to disappoint. And it didn't stop there. It took another year before the light would begin to show.

A year wasted? I think not. It's not something i wanted. It certainly felt like it was wasted. But God had His plan. It was a boost into the healing that I wanted, that I asked for. I've learned the art of grieving about the idea of hope. And though my life looks like I'm choosing these paths, the path was chosen for me. I am limited I am working and going to school like I was before. Maybe people will think I"m picking up where I left off, and in a way that's what I want.

But it's not like that. As I'm writing this I know I will go home so I can use a TENS unit on my tense muscles that go spastic whenever they want and I have my instant ice packs in my purse along with an almost empty bottle of Aleve, Migralief tablets and my Dramamine for nausea. My sunglasses are always available. The major and classes I chose, the work I choose has to be flexible. If I have a bad day and need to stay home or if I need to zone out or rest. I have to learn to relax my muscles as much as possible and even though I want good posture I need to forget about that for the sake of neck pain relief.

Whats gotten me through has been http://chronicillnesssupport.typepad.com/ and this verse:
PSALM 40
I waited patiently for the LORD;
he turned to me and heard my cry.
He lifted me out of the slimy pit,
out of the mud and mire;
he set my feet on a rock
and gave me a firm place to stand.
He put a new song in my mouth,
a hymn of praise to our God.
Many will see and fear
and put their trust in the LORD.

Also the knowledge that all things are for the good of all those that believe. The order of events in my life contribute to the order of events in another life. If I know that theres a possibility I'm in pain and distress because another person will benefit greatly it is worth while. It's a way to endure.

But one thing that has been constant since the start of my back pain 2 years ago is I have prayed and hoped it would not interfere or cause my dancing to go away. I don't know why but I still have that passion and who knows if it will ever be fulfilled in any way. I hope that my blogs are a source of encouragement to anyone out there.

PS I do like my classes and I do like my job and I am enjoying my husband more and more each day.

unhappy and unsatisfied

but i feel unsatisfied and unhappy but mostly unsatisfied. i'm not sure why. i think it has alot to do with my health and how i used to be and how i am very limited now.

for example i cant even enjoy you know with my hubby because i get muscle exhaustion. i cant enjoy housework because now i work 4 hours a day and come home feeling unwell. i cant just get up and enjoy life anymore. all i can do is go online and go on the computer and go out sometimes and go to work now (my first week). every action i take and every goal i set is limited by my health.

I used to dance. before i got really sick i realized what i love the most is dancing. now i cant do it :-(

what to do?

my first step i think is going to join the ymca. they have arthritis swim and chair classes so we'll see.

I want to be 21

I am very dissatisfied with my life. And rightfully so. Some would chalk it up to depression and at times I would as well. I want to live life fully. And yet I try to live life fully given my limitations. Do you ever feel like life went by and you did extraordinary things during that time but never fully lived it? Of course not. Not many people do. Or should I say they do because nearly half of all Americans have to suffer through invisible illnesses. I'm only 21 but this illness has caused me to age significantly to about 80 and back. I've lost friends for different reasons. Because I can no longer keep up any kind of social life and because I am no longer willing to be around people who judges me for my illness and the decisions I make around it. So when I want to be around people my age and actually experience what a college student should and when I'm ready for it it's not available to me. Other times, nearly 80 percent of the time I do not want to be around people my age. Few have had to deal with something like this. They cant understand why I am the way I am, even though I so desperately want to have that full of life feeling where I can go anywhere on my two feet. I've lost the last year of my life. I've lost it, even though others haven't. I can't find it and it wont return. That whole year of my life no matter how wonderful things may have been, its gone. I cannot take it back and use it to my maximum agile energetic ability full of passion and promise. Things that are "fun" in my life now, Being ABLE to notice the sunset, oh something i used to dream for every day and now all i can see is the pain in my eyes and all over my body, in my stomach and weakness, sleepy always, feel like my mind has went from IQ of 120 to 50 in just one short year. embarrassment from lack of mind. GONE its all gone. And I can't even look back on the year to remember it and remember the things that happened. Its like my life stopped for a year I was in a coma that was full of crushing pain while everyones lives continued on.

update from last blog

so ive done alot of thinking lately. everything i knew i loved i dont enjoy right? well for one thing its only temporary because of my fatigue. and another thing every other day i change my mind about what i'm going to do with my life right now. my mind is wracking over these decisions. do i go to csun and start this new major head on? or go slowly. do i quit csun and go to a community college and take things like creative writing and maybe work? do i pursue more early education degrees? Do i take the things i like such as art and music at csun and possibly create a major? one of the main reasons i'm considering these things is because of control. i want so badly to make money so i can be in control and i need to release the control. i know if i do communication disorders i could be making a decent wage afterwards. or do i pursue just being a wife? learning how to create dishes and do scrapbooking and other things like that just staying home? which honestly is what ive been enjoying much more lately. i feel like maybe this disease has caused me to experience something that i actually love which i never thought i would. maybe my true hearts desire is to be a mother and a wife and not work. thats whats been going on lately at least. having a baby and the desire to be a mom has been popping up alot lately. taking care of my home and such. and my enjoyment comes more out of my imagination than anything else. for instance i just got back from my friends home. shes a mother and a wife and they live in a quaint house owned by her inlaws. she cant really do much with it cuz their renting and her inlaws use alot of the yard for storing equipment and cars (they are contractors) i like their house because well my friend she likes to do some gardening planting herbs and rose bushes, scrapbooking, etc all the things ive been desiring to do. and the thing i like most about their house is that if i lived there i would enjoy it merely because you can imagine so much. if you have a perfect house all brand new and decorated and you can see it with your eyes whats left to imagine or create? youll have to find something else. but there you can do things like plant a rose bush here or place a bench there etc. i dont know if any of this makes sense but it does to me. this diesease has really been a blessing in disguise. i have no hair and can do nothing more than imagine and stare at the stars or go on a short walk or feel the breeze on a warm day or lay in the grass or iron some clothes. its kinda therapeutic. and i dont want to leave it behind to return to the hussle bussle of the busy life that i used to have and everyone else has where they dont have time or care to walk in the park and think of nothing more than how beautiful the leaves in the trees look as they sway against the blue sky.

so back to school. i shared with mike that i just want to be a wife. nothing more. and that i'm torn about what to do. its not really practical yet thats what i desire. he said i could do that just be a wife. and then he suggested a few things where in the end i decided that i will continue my education of communication disorders so that one day when i'm 40 and the kids are in high school or what not i can do something or maybe there will be a day where mike will be out of work or he gets sick and i can care for him by working. so now i'm not going to school so i can finish so i can work so i can make money. and that makes me happy and content.

another thing that bothers me is i have defined myself by the things i enjoy. i never wanted to define myself as a wife and thats all or a mom and thats all. i would cringe at the thought because i want my life to have purpose. i wanted to be a server and help the poor and care for the needy etc. i liked to dance and wanted to be good at it. its hard not to think of those things. and why do i have to go take a class to become a writer or a dancer or an artist? and why do i need degrees in them? i know that came from nowhere but i think about those things only because i think well i enjoy them so i should take classes and then get a degree in them and that is the only way i can do them. i dont make any sense but it ties back to the imagination that ive been developing lately the creativity. it comes from within and i can create in my head and i can write and i can learn all those things without college and on my own even as a wife or a mom. i guess i feel i'm dependent on schooling to learn anything.

im not depressed i just need to redefine who i am and i guess i shouldnt even do that. define myself. just be. and enjoy. thats all there is to life. its weird but thats what this disease has taught me.

everything i knew i loved i dont enjoy

i find it so sad that i find more enjoyment in cuddling in my blanket, spending hours ironing clothes and nothing else, laying in the grass staring at a tree while listening to music and staring at the stars than anything i love. i love kids, i love dancing, i love art, etc. but when i do those things i dont have enjoyment anymore. its so sad. i dont know why this is happening to me! everything i knew i was i cant find anymore.

also i get distracted really easily now to the point where its overwhelming for me. like i have ADD or something but i was never like that.

i've been fatigued. i dont know really what to call it. my body is awake but my mind is asleep. in a dream state.

today i walked in the heat with my dog for about 1/4 mile and started feeling a little ill. i think that i'm still sick but i've managed it very well with my different supplements and strategies to fight inflamation and such. i used to push myself through it.

fuck it all!

feeling content

I've had two good days. I'm happy at peace and I'm trying hard not to push myself or get down on myself. I'm feeling content and i have little pain and weakness. i mean I'm not feeling like today i could work or anything without killing myself but I'm feeling like I'm getting there. I'm hoping its not a fluke.

I'm trying to eat better. i really pushed myself on Sunday though when i made one too many commitments (meaning 2 commitments haha) and told myself that i should follow through with them anyways because that way I'll learn to not do that again. i got a migraine that night and felt dehydrated so i drank a glass of water.

i find myself trying to find ways to entertain myself. I'm usually a doer and now i cant do stuff only because of my "SUMMER OFF" thing. i know i need purpose. this summer will definitely stretch me in that way because I need to stick to doing nothing really except relax and have a vacation and get better.

i need to praise God for my health lately. i prayed for him to make me better and told him i would praise him for it every day if he did but I'm still hesitant. that comes with the territory (meaning ME lol).

I'm thinking of doing Communication Disorders program at school so I'm going to a meeting on thursday about it. My husband and I are getting along better now, my sister is still a little upset at me but my mom is not at all (she is always extreme like that though.)

PS: I havent had my period for almost 2 months now. I should know the results of my labs this week (if i call) or at least by my follow up in a couple weeks.

wow today was great. i slept in though which is good. i was able to walk ALOT today and even do a few turns (cuz i like to dance in random places like the bus stop :-)

i'm tired tonight and i think i'm gonna be able to sleep well. i feel like i did before when i worked and i was having a hard time because i was working and going to school and not feeling well at the same time. so thats good. its much improvement.

i think that god might be healing me.

i get this feeling when i take a shower like the blood is pooling in my feet and hands and they hurt alot and feel like i need to shake them and massage them and lift them up instead of standing on them (or in my hands case keeping them down).

another thing i've been still spotting those red dots in random places. my right shoulder has a bigger one (still very small but i was able to take a picture of it before my camera died on me).

along with the feet pain i feel i see like spider veins all in my feet and calves. at first it was just in my right foot and now its in my left foot. so i'm going to bring that up to the doc next friday when i go.

i spent a long time in Michaels' today looking for scrapbooking stuff for my wedding album. i found some cool paper. i got some good ideas. i'm going to take it like one page at a time and i have an idea of what i'm gonna do with the whole thing as well.

i havent done any knitting lately though. but i will in time. i think that scrapbooking is a little funner and slightly more challenging and if i have the energy for it i like to do that instead.

TAKE THE SUMMER OFF!!! is my motto

AT LEAST i'm happy

I cant sleep tonight because of all the things going through my head

anticipation of scrapbooking
maybing talking with my mom again
wanting to dance
wanting to work
wanting to be something more
the apointment tomorrow about my dog with the housing office...eek
the fact that i will probably miss the apointment because if i wake up still tired the rest of the day is shot for me.

i have to tell myself to at least take the summer OFF!!!!!!!!! doing NOTHING!!! i can't take that chance of pushing myself and then i just end up in the roller coaster again. But i dream of what i could do with the money.....basically all related to my health and enjoyment (cuz if i can enjoy somethings then that will improve my health).

Today i made an apointment with the allergist (again) but this time i asked for more than just the regular allergy test. I asked if they tested for food allergies and molds and stuff and that I wanted those as well. So i'm defintely having more confidence.

My tack board is now filled. I dont know if i can fill it any more than it is. The thing is I will notice things much better if they are up there rather than in a pile somewhere. it has actually done me good so far! I look at it a couple times a day just cuz i do that sort of thing. I have a few encouraging things up there as well. so it works out.

okay i was fatigued/ well really more sleepy really today. i have like sharp stabbing shooting pains through my head and neck but its nothing compared what its like usually. I was able to get a few things done, clean up a bunch and relax a bunch. I felt like i made some goals and plans for myself and accomplished things today.

so now i have a few hobbies possibly. so its good.