i said no a million times|
but you wouldn't listen
my body said no a million times
even after i was silenced
but yours didn't listen
now i struggle to find my voice
i knew you won't listen anyways
i know you won't listen either
none of the boys listen
my voice doesn't matter
but can i learn to fly again?
I am not so sure.
It's been years and still my wings have tears.
Torn and broken.
Did you know I would suffer all these years
even long after you "touched" me?
Did you know I would never be "normal" again?
I've tried it all and it still hurts inside.
I can never forget.
I've never had a day when I'm not aware of these scars.
Do I have a voice to find?
I'm not even sure it ever existed.
|» life is tough...|
I'm not sure how to put this to words, so I'm just going to let my fingers type what comes. I'm 35. That's relatively young still with current lifespans in our country. But I feel like I'm dying. I've probably experienced more than most at my age. I have so much to say and yet I feel constrained not to say it, even in a journal that I have kept anonymous. Things I want to share about my childhood, things about my adulthood. I find myself reflecting on the totality of my life at this moment as I feel my life hangs on the balance. Despite being sexually abused for years by someone, I have been the one determined to persevere, to seek healing, to seek a way to cope and thrive. Despite being emotionally abused, I sought to be resilient and to show others I was better than what they thought of me. I am the strong one. Despite having a marriage from hell for years, I even fought through that and we made it to the other side stronger than before. No, we aren't perfect by any means, but we make it work. Despite being crapped on when I pursued my hearts desire to minister to others, and were bitten by the snakes in the church never to be allowed to fulfill my calling... I have remained faithful to God in spite of the church. I have struggled with health issues and tried to survive despite having doctors that refuse to listen. I have struggled against suicide and self-harm but became an overcomer. Not through removal of temptation, but through faith and resolve. And I have been through tragedies and losses that are beyond the depths most will ever experience in their life, but I have not give up. And though I have pretty much been abandoned by all human friends, and loneliness is my daily mantra, I still hang on. And though my plate is full raising a family with special needs, I always find sunshine in the midst of the darkness that envelopes me. This is not even the tip of the iceberg for me. Though I have struggled my entire life with one thing after another, I have always had the will to fight and stand true. I have always sought to be an overachiever. I've always fought through the valid tears and fears and determined to not give up. I wanted to make it. And I wanted to help others along the way. I am so weak, but somehow God has always granted me strength. And here I am, life finally starting to come together in some ways, dreams on the cusp of fulfillment, and I find myself losing my will to live. My health is failing. I can't find a doctor who cares. No one wants to take my insurance. The only clinic willing to take my insurance, is a pill pusher for depression medicines. They don't listen to a word that's said about valid health concerns- they want to diagnose everything as depression. No, I wasn't depressed, I was ill. My body hates me right now. It's not cooperating. I'm pretty sure I have lupus, I have like 90% of the symptoms, but no one wants to listen. I had a freaking mini-stroke at age 29! I'm young, but that doesn't mean all my body concerns are imagined, there is something legitimately wrong with my body and I feel myself fading. And then there was the lump. In May I found a lump in my breast. Because they were able to feel it too, I finally got them to listen to me, and got sent to the breast specialist. Mammogram shows nothing because I'm young and so my breasts are still too dense to read. But we can feel the lump, and ultrasound shows it loud and clear. Yesterday, I had my first biopsy on it. I wait for the results till Tuesday. My life hanging in the balance in these days of waiting... and I realize that I no longer have the strength and will to keep fighting. There is a small part of me that silently wishes results to be such that I will no longer have to fight to live anymore, that I can find rest and be with Jesus and have no more sorrow. I am too tired to keep fighting just to be able to find a ray of sunshine. I have lost my resolve. I realize now that I am already dead. There is no will left in me. I am not sure I want to continue on even if the biopsy comes back negative. I'm in a place mentally that has given up. I'm struggling. I'm drowning. Can I be saved? Is there anyone who can rescue me this time? I've always rescued myself, but I'm too weak for that now. My weakness has overtaken me, mind and body... All I can do is ask for prayers. I have a good life right now, truly. I try to see all the many positives, but it's not changing how I feel. Someone pull me from these waters. I can't do it alone anymore.|
Well... I can't believe I've made it this far. In february we bid on our first house. Through a horrific loan process since then we are only just now getting a clear to close. The house will need a lot of rehab work to move in, but should be nice when finished. Unfortunately since the loan took so long to complete... The lease already ended on our apartment and so we were forced to move into my sister's basement temporarily while the lender continued to work on our file. All the uncertainty of not knowing if the loan will go through or not and essentially being homeless in this time while waiting and praying for positive answers has been beyond stressful. Knowing our futures depend completely upon the lenders and knowing I have no control over anything...has really made me realize how important it is to me to be in control. And this uneasy transition time has been so stressful and seems to bring up those gut churning feelings like my past... But I have nowhere private to process everything here, so I decided I ought to write here a lil. It's been a little difficult for me, but overall I have still maintained for the most part to have hope. Life has been interesting the past few months. I wish I could write more but I'm on my iPod touch and getting sleepy... Night all.
Posted via LiveJournal app for iPhone.
|» I am still alive!|
Man I can't count how many times i've meant to update and haven't... or just checked in but didn't write details. and this is yet another one. but here is the really quick update- i am still alive. i am mostly doing well. marriage is going well (much better than previous years!) tho sex time is rare cuz i can't seem to get lil guy to sleep without him being in our bed. i just bought him a new big boy bed tho that's awesome and started enforcing a new rule that he has to sleep in his bed at night time and after the sun rises he's allowed to come cuddle in mommy's bed. he's gonna be 5 soon! can't believe it. he still has his ITP (blood disorder) but it's been running on the low end of normal so we are counting the scary part of it as being done! hopefully it will stay near that range or better forever. he is officially "deaf" in 1 ear. he can hear in it if the volume is really loud, but regular talking not so much. they are starting to think he may be on the mild side of the autistic spectrum too so now i have to schedule to have him evaluated for that. but he's super smart and amazing and cute and i am so much in love with my lil guy :) very special to me. hubby treats me better than he ever has, so that's well. i still fight depression occasionally, but not nearly as much as i used to have, and definitely not suicidal. triggers are rare on the CSA but do still hit me once in a while, but i can usually address them atm and move forward after a few moments. for some reason when i do orgasm, i tend to cry! can't determine if i cry for good reasons or sad, but i just start crying for no reason i can discern lol. as for church and being in ministry, we got so wounded a few years ago that we ended up quitting going to church altogether, and obviously not in ministry. not planning on being in ministry either, tho not opposed to it should some miracles change things in our lives. we still love and serve Jesus at home though. my youngest brother turns 23 today, same age as my other brother when he died, so today was a bit emotional for my family. i think it's hard on my parents too cuz lil bro is gay, which they are fine with, but there is no one to carry on family name to offspring besides him and it looks like he is not going to have kids. he will likely bring notariety to the family in other ways, he graduated with a degree in astro-physics, very intelligent guy, and is heading into the military with plans to head into being an astronaut i think. so anyways, that's the really short version of my life right now, and overall i'm doing well. still having health issues. latest diagnosis for me is non-specific colitis. the doctor says it's because i am constipated that's causing these awful colitis issues in my colon, to increase my fiber, which i have done, and i'm not constipated fwiw... and still having issues. so seems i will be stuck like this forever cuz the only treatment they prescribe for me is more fiber in my diet. am ok otherwise. could be better with some health, but am making it. oh, and the other big thing, we're going to try to get a house and move out of the ghetto, and be nearer my family! so hoping we will qualify for a small mortgage, i think we will be able to get one for about $70k, so hoping to find a nice foreclosed house in that price range near my mom's! so pray for us for that!!! :) k, over and out! and hope you are all doing wonderful!|
So today I had follow up on my colonoscopy. Good news is I don't have bid, chron's, ulcerative colitis or cancer... Only nonspecific colitis. They think chronic constipation brought it on, which I've had since i was young, so why the issues suddenly at 32? Basically I was told it's probably stress and not enough fiber, so I need to eat more fiber and make myself re-potty train by sitting on the toilet every other day for 30 minutes whether I feel like pooping or not. I have handled stress all my life, why would it just now be hitting my health so awful. And finding 30 minutes of alone time is not possible. And if I had the luxury of alone time I don't really want to spend it on the toilet just waiting for nothing. In the wake of all this I came to realize I kinda don't like being closed in the bathroom cuz of my CSA that sometimes happened there. So I'm feeling like he won. Here I am almost 32 and having health issues cuz of the jerk who did stuff to me as a kid. Ironically I thought I was doing well mentally lately... So why is it hitting me physically instead? Sigh.
Posted via LiveJournal app for iPhone.
|» near and far |
A lil song lyrics I wrote today, don't have a melody for it per se, but inspired but what I felt in our marriage all these years when we were having trouble connecting. Thankfully we are doing better than we were and still walking the path to become the best we can at this thing called marriage. Song is called 'Near and Far'.|
I need to feel close to you
Look into my eyes
Tell me what you really see
It’s not a surprise
Hold me closely
Closer to you
With you is where I wanna be
Close to you
But you feel so far away
Even when I’m in your arms
I am so in love with you
Entranced by your wildest charms
Hold me closely
Closer to you
With you is where I wanna be
Close to you
You know I’m so into you
But you hold me so far away
Though I am in your arms
It’s so not what you say
Cuz in your eyes
Not showing me what to do
To cross the bridges you have burned
I’m bleeding through
The distance is killing me
Not having true intimacy
Being so near to you
And yet so far away
|» a short update|
"not another crisis, my schedule is full"|
i don't even know where to begin. so i'm just going to record facts.
baby has been doing great. he turned 3 last month and he is such a treat. he is the sunshine in my life.
hmm July was our 8th anniversary- and it didn't go so well. as you can read from previous posts, i was having a really hard time acknowledging what actually happened to me on our honeymoon (and how i was treated after that)... and trying to find a way to still celebrate the day that brought me so much pain. And i was trying to process how it is that the man who had just vowed his love to me could have been so inconsiderate, uncaring, selfish, impatient. It was a rough time for me and finally I had the courage to let justin know that, instead of just holding it in and pretending the day was ok.like i've done on previous years. But finally i had learned to quit taking all the blame on myself for that night and put some of it on him. this is not to say that i really view him as a monster (though it felt like such to me as i was processing it all), i just thing he was an over-eager jerk who made a poor and selfish choice without considering my readiness or feelings. to make a long story short,... hubby did not handle that shift of guilt well at all. ..... so it's been pretty miserable most days since then. well it was miserable before too. not to say we haven't had some good days. but lots of hard ones. we've both been playing an online game together, i joined it hoping to rekindle flames together and that we would both gain some friends since we are lonely. we got into roleplay and such. but i found the same dysfunctions we had in real life, we carried with us into computer life...so our avatars never really connected, sadly. he became indifferent and cold towards me, no feelings for me, didn't want to spend time with me in real life or virtually in the game, i would even ask him to have sex with me and he would decline, he was too busy talking to some other girl. and he lost any care and concern for my health. in october i had a mini-stroke and spent a couple days in the hospital. i had not had 8 hours of sleep since lil guy was born. my body just decided it was done functioning really. so anyways, i got out of the hospital after that scary time.... who gets a mini-stroke at at 30? so anyways 2 days out of the hospital, kieran had been up late, i was exhausted i awoke with kieran that morning and asked hubby to watch him and keep him out of the bedroom for a couple hours since i really needed some more sleep. his response "quit your belly-aching, i'm tired of hearing you complain about sleep" ... but i hadn't been getting any sleep. he didn't even care. so seeing his attitude show his true colors, i said if he was not willing to help me meet a physical NEED, not a luxury, but a NEED for my health, then i would go live with my mom who would help. he said "fine". he didn't even care. seemed he was glad at the idea of getting rid of me. guess i couldn't measure up to the girl online. so anyways, this is the attitude i have had to deal with the past few months especially. it's been very hard and hurtful. yet i still love him and have cried very much to think he does not love me. i noticed him caring for that other girl though in ways that he has never cared for me. it was hard to bear. so finally last tuesday 2/23 he comes home from work in a very cold attitude, sits down and says "we need to talk". i knew it must be serious. i dropped everything i was doing and then he started with "i'm filing for divorce". he essentially blamed everything on me. i have begged him to stay. i hurt so much. i don't know how much more of this i can bear. after talking and crying alot he said he would stay... though he is not writing divorce off as an option. i hurt so much... i don't even have words. wednesday night after talking more he became a little more sincere and said he was sorry for putting me through this.... he had plans of running off with that other girl and not even warning me. he had scheduled an appointment with an attorney already for friday for divorce consultation which he also was not going to tell me about. i can understand how he can get emotionally attached to another girl online easily... i don't condone it, but i can understand how easy that can happen unintentionally. but i can't believe he was going to just walk out without even a warning! i am just in shock. i never thought he would be that type. yet something stopped him and he decided to tell me. after talking, he decided to cancel the meeting with the attorney the next day. and now we just started going to counseling as a last effort to see if we can save our marriage. he said "i guess it's only fair i give you a chance". he is playing the blame game, one day it's all my fault, the next day he's sorry and says he's a monster that doesn't deserve my love. and no, he doesn't really deserve my love at this point. yet i still love him, i just hurt really bad. but he is still unsure if he can commit to me again. i feel so broken. so depressed. and not sure i am strong enough to survive this. i apparently have no value to him that he could consider just leaving me like that and that he can't find enough reason to promise to stay with me now. me and kieran both i guess... are rejected. just sad. he is so oblivious to how much i have tolerated with him and how much i still love him anyways, oblivious to any value i may have... i guess the rest of the world always looks greener. i am sad beyond words. i just hope we can work this out, but i guess if he still decides to leave i have to still find a reason to smile. maybe someday my sun will shine. it's been a long time since i've seen the sun. at least i still have kieran though. he is the best sunshine ever. i can say this, if hubby and i fail at marriage, at least i can say we make the best kids. kieran is simply the best thing ever. love him immensely :)
|» Platelet Counts|
Well, I've decided to keep track of Kieran's platelet counts all in one spot... so this post will remain at the top of my journal for a while. I just don't want to lose the data in the midst of all my other posts... so this post will be updated every time anything significant occurs. Here we go on the journey:|
10-16-08 got Hepatitis A vaccine (related???)
11-06-08 Kieran woke up with little red/purple pin-prick rash all over his body. Prior to this, he had one little rash spot on his bottom for a couple weeks, had a very minor cold (runny nose) for an evening earlier that week, and was otherwise healthy to my observations. he did seem a little fatigued and played on the floor a lot more than usual- not being as active as typical. Also had a little bit of blood in his snot once and was bleeding from gums during tooth-brushing some, but didn't think much of it. we took him to med center and they didn't know what was wrong, so they gave him antibiotics as a precaution.
11-07-08 I noticed he was bruising all over in weird spots, lots of little bruises. I called the after-hours nurse and she said to bring him to the ER for evaluation.
11-08-08 We took him to the ER in the morning. Blood tests confirmed that his platelets were at only 4k (150-400k is normal). Being so low, and looking at other factors, he was diagnosed with Idiopathic Thrombocytopenic Purpura (ITP). They took him off his antibiotics.
They administered Winrho (Rhogam) through his IV and pre-treated him with Tylenol and Benadryl to help with the side-effects. Got some flu-like symptoms for a few hours from the medicine and vomited once, but otherwise was okay.
11-09-08 at 22k platelets, released from the hospital that afternoon.
11-12-08 at 45k
11-25-08 at 20k during follow-up visit with hemotology (had a few petechia spots)
12-02-08 at 4k... petechia were gradually increasing over the last few days (in number of spots and in darker color), had lots of spots today and seemed fatigued and easily upset (fussy/clingy) over last couple days. We were sent back to hospital for IV dose of Winrho.
12-5-08 at 25k. petechia starting to go away again. has won over all the hospital staff's favor...
12-09-08 at 42k :)
12-16-08 at 11k :( more petechia today... gotta draw blood again on Thursday and will likely get an infusion of IVIG on Friday... so another treatment for me to research. this is very difficult emotionally for me... my poor lil guy!
12-18-08 at 12k! :) he went up, all on his own!!! :) albeit was only a lil and it's no gaurantee that it won't drop again, but yay!!! that's good news! tomorrow he will get another dose of Winrho to get him through the holiday season, but hopefully he will start to climb on his own some more, if not then they are going to discuss other treatment options with us. but yay, 12!
12-19-08 at 16k!!! all on his own! did a dose of Winrho again to help boost it some more, but we're on the right track! yay! will have platelet count again on monday to see where it's going. might start prednisone treatment if necessary, but hopefully he won't need it!
12-22-08 at 64k!!! yay, the highest yet since being diagnosed. i think we're on the right track!
12-26-28 at 46k. roller coaster goes down.... but hopefully will come back up!
12-30-08 at 15k. :( not looking so up, but i'm trying to keep hoping. doctor had the insinuation that it is looking more like a chronic case, but still has hope that it will recover like an acute case. we go Tuesday for a bone marrow test to make sure that really is just ITP and not something more serious. in the mean time, his platelets are really low and they don't plan on giving him any treatments unless he begins bleeding... but the waiting scares me. anything under 10k and he could start bleeding spontaneously without injury in serious places like his brain. i am very apprehensive, but i guess lots of people decide not to treat ITP at all... so i can only pray that maybe they'll go up. please pray!
01-02-09 at 18k! all on his own! it's not much, but i'm glad it's in the right direction to start the year off with! we will still have the marrow test on Tuesday, but if he's still climbing little by little I think I will request to NOT start treatment yet.
01-06-09 at 31k!!! all on his own! So excited to see his numbers going up on their own... hopefully they will keep climbing little by little and not reverse any. Because of this, I talked with the doctor today and decided to NOT start the prednisone yet but instead to keep monitoring the numbers and as long as they keep climbing, we are not going to treat. Also had the bone marrow aspiration test done today- it was kind of rough, but he came through pretty well. we should know some results tomorrow and the rest of results will be back in about a month. details on today are in my additional journal entry for today's date :)
01-08-09 bone marrow results came back- they are NORMAL! So he is producing enough platelets, his body is just destroying them...so ITP is the correct diagnosis for sure. :) yay! It could have been worse than ITP, so this is a relief! Thank you Jesus! now we just pray and wait for his platelets to continue rising!
01-13-09 at 17k. not what i had hoped, but it could be worse. doc said we could wait another week and watch if wanted before starting prednisone, so we are waiting and hoping for it to go up :) had extra bloodwork and urine test done yesterday because his pediatrician says he's not gaining enough weight for his height. those tests came back okay, i think she said glucose was at 116 but that was okay given the time he ate, and they had some keytones in his urine, but that's not necessarily bad either. thyroid and stuff came back fine- as i knew! he is not malnourished, just skinny and high energy like i was at his age. he's getting so used to the blood tests now that he didn't even really cry- complained a minute, but was fine. kind of sad that he is used to being poked, but i'm glad it's not so traumatizing to him anymore.
01-20-09 at 58k!!!!! wooohooo! Had few more petechiae in the last few days, so I thought he was going down. Has a slight cold right now otherwise... but 58k all on his own!!! totally celebrating today!
01-27-09 at 12k. Some mix ups at the hospital that they had to clarify and the lab machine was broke down yesterday, so they weren't able to count his platelets till late in the night. I'm thinking that the platelets clumped due to the waiting time and so the count is not accurate. Will get recounted tomorrow to see if the number is accurate. He doesn't seem like his platelets are low though- his “long-term” petechiae have been disappearing and bruises seem to be healing too- and he's been full of energy and oineryness. 12K is a big drop from 58k a week ago. Hopefully the recheck will look better, otherwise, we will be starting prednisone :(.
01-29-09 at 14k. :( the numbers were accurate. have a doc appointment tomorrow and will likely start the prednisone.
02/01/09 saw hemotologist and discussed my concerns. he seems to think this could be a chronic case, but we'll see as it is still condered acute by definition. got his prescription for pred.
01-31-09 started Prednisolone- 3 cc twice a day. he hates the flavor. has a bad cold too. poor lil guy!
02-03-09 at 157k!!! yay, we're in the normal range for the first time! barely, since normal begins at 150k, but we hit it! the downside is it's making him extremely hyper still and he's having a hard time sleeping well. has been waking up full of energy at like 3-4 a.m.... as if he had been wired to a caffeine IV at full drip! he wakes up talking, smiling, with hands clapping wildly and lil feet just in motion.... but eyes looking tired and only having had a few hours of sleep. his cold seems worse. i'm apprehensive about having him on the meds and think when we taper them off he will lose his platelets again... so why subject him to all the steroid side effects? but this is supposed to be a short trial and hubby wanted to try it. i hope it will work. i'm praying for a miracle.
02-10-09 at 335k!!!! whoa! this was with prednisolone, but it'd be nice if it remained high once off the meds... praying!
02-17-09 at 217k :) still normal range
02-24-09 at 117k (if i remember correctly)
02-27-09 dropped prednisolone down to one dose a day.
03-03-09 at 81k platelets, 79 glucose. I was hoping it wouldn't drop... keep praying.
03-10-09 at 85k :) hope it keeps going up :)
03-17-09 at 53k :( not great, but not too bad. He had a cold, so I think it affected his immune system/counts.
03-27-09 at 99k! nice :) seems to be working, hopefully continues to improve. doc said we could drop his dose down.
03-31-09 dropped prednisolone dose down to 2 cc per day.
04-01-09 at 57k
04-07-09 at 61k
04-15-09 at 63k? (i should have wrote it down when it was fresh in my head)
04-21-09 at 57k?
04-28-09 at 80k! yay! ( i feel like God told me he is healed... we'll watch numbers for confirmation in case i'm off my rocker)
05-02-09 dropped prednisolone dose down to 1.5 cc per day.
05-05-09 at 146 woohoo!!!!!
05-12-09 at 85k?
05-15-09 dropped prednisolone dose down to 1 cc per day.
05-19-09 at 138k yay!!!
05-26-09 ??? moving, forgot to record.
05-30-09 dropped prednisolone dose down to 1 cc every other day (skip day starting today).
06-03-09 at 74k (no prednisone today)
06-09-09 at 77k (no pred today)
06-16-09 ??? forgot to write it. 83k?
06-23-09 at 203k. Yay!!!!! (had pred today)
07-29-09 at 76k. (haven't had checked in month due to no insurance. didn't have pred today)
08-17-09? was about 100k. i can't remember exactly the day or platelets because i forgot to write them here. I am no longer as stressed out about the condition, it's become more normalized to me with his higher numbers, so am less likely to write them down i guess. eeks. so i forgot. we are getting tested every 2-3 weeks now.
09-01-09 at 107k. we can test once a month now. at his next doctor visit, we plan to drop prednisolone down to once every 3 days. lately kieran has been easily irritable. not sure if it's just the terrible two's, or a side effect of the steroids... roid rage. but boy can he scream! i hope this passes soon.
I haven't updated in a long time.... but Kieran's platelets have been staying mostly between 90-125 lately. He is now considered a Chronic ITP case since he's had it over 1 year, but i can say he seems to be better now than at first. We have dropped him down to .75 cc prednisolone every other day, and still keeping numbers somewhat high.
02-11-10 we gave him his last dose of prednisolone. He is now off all medicines and we are watching to see how he does.
02-19-10 at 95k platelets and not taking any medicine! woohoo.
02-26-10 at 125k platelets and no medicine! :) thank you Jesus!