Up In The AIR!!!

Right now, I am awake, while everyone in this house is sleeping. I am having the weirdest bleed pattern ever. Generally for years I didn't have the menstral cycle at all. My daughter is a teenager now, so everytime she gets her period, I get all the symptoms of having a period...then I spot...then it goes away. Today is a WAY different story. I am bleeding so much that a super tampon, liner & I barely lasted 2 hours. Now, I just decided to use the super tampon plus the night pad, so it is a little bit longer in the back, to get more coverage. I folded the towel twice over and it is under me now. I think I had too much sugar today and I can't sleep. Although I am super tired. I don't know what to do. I feel like I could collapse any minute. I have been praying for many things these days. But more than usual. The stress of having a life, having a family, then me-mom.

I'm worried about insurance coverage that I just got through my husband's work. I don't know where the brochures and stuff is located. So I need to go online, while I am fully coherent and read through a whole bunch of RULES. I just don't want to panic about coverage, etc. You know what I mean.

The next thing...ta dah!(yeah right!) SSDI. I am trying and it has been so ridiculous and they keep dragging their feet. We are holding on as long as we can. This financial burden isn't good for our marriage. I am sure my husband has many frustrations, but he is so understanding nowadays. But we have our moments. I guess if there wasn't any fire, we would be blown out quick. We are totally opposites in almost everything. But we compromise as much as we can. So basically these last or almost two years of unemployment, dissolution of every thing, sold anything of worth, even cashed out all of our savings. This is it. If it doesn't get decided in our favor I don't know where that will leave us. We won't have money, no savings, definitely bills!!! The last thing I heard from my attorney was on Tuesday--she called SSDI to see where my file is--it is on the decision pile. That is great news. Now we just need to have them to decide that I am eligeable (sp?) okay let's say my pain meds are kicking in a little bit which is finally some relief. I'm praying, crossing my fingers, please think of me! I need everyone to help, please.

spring time...

Spring is in the air. The official first day of spring has past and now we are in the midst of snow, ugh. Some of the things we love about living in Colorado. I guess travelling and coming home to it is very different than if I was home and it just snowed. I have to do a ton of things since I've been gone. We have no groceries is the first thing that I have to jump on. Since I have been home all I have done is sleep. I was so exhausted that I slept for three days through. I don't even think I ate during those three days, but it felt wonderful. My body definitely needed it.

During the spring my daughter got to meet my very old grandma. I was very happy to see my grandma. She lives so far away, yet she is still very independent. I miss her so quickly after we visit her. I just can't believe the love I feel for my grandma that it hurts. I have asked her to move in with us, but I know the different climate would be difficult. Plus, we live in a two-story house, but there is a room downstairs that I would have to move the doggies out of and insulate it better so she won't freeze in it. It is all exterior walls so it is almost like the room is outside of the whole house so the temperature in that room isn't great. I would be so selfish to ask her as all of her friends are where she lives right now.

Husband

What is a husband? Besides being the person you are supposed to be sharing your life with? My husband is hard to tell. He can be so loving, but other times I wonder. I wonder if he really loves me. Love is so difficult to understand. We have been married for almost 15 years and we are still trying to figure out the wrinkles in our marriage. One day, moment, second, we are okay, then it could change in the matter of a snap. Depending on attitude and mood.

family...

As we get older, together, friction is attained. Why?

I have decided to re-write this section. The scrutiny that I put on my own family was just evading and sounded awful.

I have neck pain today. I am not sure if I should use my tens unit or if it is just a stiff neck because I'm starting to get a cold (from the family). I think I'm just tired.

I have picked out my clothes for tomorrow and put out notes as to what I need to do first. I have checked out my week and it is pretty light loaded.

Reading...

Lupus Now had an interesting article called "Close to Home: Teens talk about parents with lupus". Lupus Now has always been a great magazine for me. It is more down to earth and easy to understand. They have articles that really appeal to real life people who suffer from lupus.

Lately, I haven't been blogging for several reasons. I won't go into all of that now, but I have been experiencing new medication: oxycontin. We started at 10 mg a day and now I'm up to 160 mg a day. This is trying to preserve the quality of life for me. So far it has been working, but driving is another part that we are working on. I try to drive to limited areas so that I could be less dangerous for both me and society.

I am still volunteering what I can of my life to the public. Some of my family members don't understand why I give up what is left of my energy to others. But it makes me feel good. Some people just don't understand. I don't think it is that hard to understand. It makes me feel like those family members are selfish. Is that mean to assume?

Everyone is sleeping or taking a nap now and I am actually alone, awake and cognizant to blog. I have been using the community bus. I never knew how to use it before, but it has been a blessing in disguise. I also made a great friend (bus driver), she''s such a sweetheart and has helped me on a large scale, even if it doesn't seem like it to her.

My family life is crazy. We are torn in all directions, everday. I'm not sure if this is good or bad. I am hoping that we are still having a strong family connection together.

Grandma

Yesterday was my grandma's birthday. I am unsure as to how old she is...I am assuming she has turned 95. I didn't know what to give or send to her. Generally, I would go and visit my other grandma (when she was alive). I can't visit my grandma now because she is too far away. I can't really leave my family here because my daughter needs to be driven back and forth to all of her activities. I had been feeling horrid because of the dramatic weather changes. I had to take a lot of extra prednisone. I had to stay in bed all of the day today. I'm just tired.

I wonder...

I wonder...
am I ever going to get disability?
am I ever going to get out of bed?
am I ever going to get out of being depressed?
am I ever going to stop meddling?
...life has been extra ordinary
I love my family;
I love the people I have met on the way;
I love the people that have inspired me;
I love life...I think?
possibilities....
will I ever change?
probably NOT.

Mommy Dearest...

There is so much that could be said about being a mom. I love being a mom. I never really quite understood why my mom ever became a mom. She is not maternal in any way and treats me in such a manner, which is pretty much appalling. It makes my insecurities that I have forgiven, come back to me as if it was yesterday. I feel very much abandoned by my mother. She never really took care of me, except financially. But money only goes so far. I can't even fathom the thought of actually saying the words..."I love you" to her because it isn't normal? I tell my daughter that I love her all the time. I am so interested in my daughter, so my daughter would wish that I would just give it a rest. I have seen some of her friends who wish their moms could just see them for once. Others get ignored, neglected, etc. Their moms are just busy bees and have their own life to live. Whereas my life is my daughter.

When I think about how my life was growing up, it makes my hands burn and my legs ache. I want to take the drugs to numb my brain so that I won't think about it anymore. I wish it would just all fade away. I think that sometimes the drugs are starting to wear off and I can't get away. What else is there left to do? Pray. I pray for forgiveness. I pray for help. Isn't that when we all look to Christ, especially in a time of need?

night owl :D

I am awake past one a.m. (which) has to be the first in a long time. It is the weekend and I took a nap in the middle of the day. I didn't do much today. I got to harass my teenager to see if she finished her homework, of course not...she was on myspace (ah hah!). I had to keep a close eye out on her or else she would have dragged it out through the weekend. She finally sounds okay, but is still coughing up mucus. So I will have her start her clarinet lessons tomorrow and we will have to squeeze two hour lessons this next week. The week after is her audition. The timing of this cold is just great, argh! I think I might be getting sick too.

As I was going through my mail...my unemployment decision was reversed! Yay!! I just have to wait a little bit.

As far as health goes...I'm on new medication - Amitiza. I'm not sure if it will work. I officially have carpel tunnel syndrome. I have to wear braces only at night. It comes and goes. I think the only time....it when I fill out of paperwork by hand. Typing doesn't seem to aggravate it as much

I booked my mother and I booked reservations for the December's Traveler's Agent Conference. She wants to stay there either earlier or after. So I just have to work out the flight plans & a show.

I have been doing the pool therapy twice a week, which has really helped. I am bleeding to death, or else I just feel like I am bleeding to death. The last time I bled like this...it was for a month. And as I recall very painful!

long time

I can't believe how long it has been since I last blogged. Life has been absolutely insane. I recently found out that I have CTS in both arms stemming from above my elbows all the way down to my fingers. It has been a very long and painful experience. At least we now have a name for the pain in my hands and arms. I already had neuropathy, but we couldn't figure out why the pain kept going up my arms. I just have to wear braces when I go to sleep. Hopefully it will work. I'm also doing my physical therapy, so they have added some items just for my nerve pain. I used to hate physical therapy, but now I love it. Yes, it can be painful. But after we find to what extent and where it is most painful, then we can treat it and learn to minimize the pain. I have been doing a lot of pool therapy which has done wonders for me. I feel like I can do anything in the pool. Which can be both good and bad, sometimes I overdo it. It is really easy to do.
My family and I have been going through some struggles, especially because I am no longer working. Financially it is so hard - but we are praying that God will soon answer our prayers. I feel like I have almost exhausted every means we have. How life has changed because of lupus and the pain that I feel every day.
Today, I was having a lot of stomach pains. I cried, now my head hurts more than ever. I took vicoprofen and vicodin - now my stomach is all better, but my head and leg hurt now. Well actually I have to say my head hurts the most. I don't think I could take anymore drugs -- because then I would just be useless for the rest of the day. Life as a vegetable is also an awful thing. It is either extreme - veggie status or pain!! hmm...which sounds better? I've been on both sides and I would have to say pain is actually better. I feel like I'm alive at least.

friends...and WORK

As I travel in time, my friends come to mind. They have been with me through everything. Besides my husband and daughter coming along. My childhood friends are still there. I can't believe how long we have been friends and how the old jokes still flow. The overwhelming feeling of seeing so many people at one time and trying to remember these people was the hardest. I guess the only enemies I have now are co-workers. Who knew it would be so hard to work with certain people? Maybe I'm just hard to deal with? Nah, everyone always has a problem because I don't look sick that I can't be sick. Why I take so much time off? Why this and that? Who cares? Apparently, they do...when you think management would take care of such things...it doesn't happen.
I am supposed to go on a job interview this afternoon. I hate starting all over, but there is only so much I can take from this job. Maybe it is really time for me to apply for disability? I just can't imagine what it will do to our dual income right now. Plus, to be alone all day, everyday, would be another story. I would probably go insane or overwork myself. I tend to do that when I am at home. Although, if I had to take care of my grandma that would be great. I am doubtful this will happen, but if I could get approved for disability and move my grandma out here, I can spend a lot of time with her before she passes away. It is only a dream.

Family?

I flew out, last minute, on a whim to meet my other half...I never really knew my father's side of the family, nor did I really know him. I bring nothing with me and just hop on the plane. I call my friend to pick me up from the airport. The stress alone...almost did me in.
I met my grandmother, it is like a long lost memory, that I just plucked from a flower. She is very old now. My grandparents raised me for about 5 to 6 years, while my parents, who knows what they were doing, dumped me there and picked me up - as if I was dropped off at daycare, but 6 years later. The last time I saw my grandmother was about 15 years ago. The last time I spoke to her was about 21 years ago. I was an emotional wreck. I decided to stay with her, only for one night and day. It brought back emotions and memories that have been long stored away. Feeling like I found a piece of my heart. It was very emotional for two of us. The biggest problem we face now is the language barrier. I used to speak her language and she used to speak mine. Since we haven't talked to each other, we stopped speaking each other's language.
I've asked her to come and visit me and possibly let me care for her, at the end of her life. But realistically, how can I ask someone that I haven't seen in so many years to pick up and leave? The rest of her family and friends are where she lives. But they don't physically care for her. She lives alone in a small apartment, part of a senior center home [imagine "In her Shoes" with Cameron Diaz]. But she acts so strong, she can walk on her own and make her own food still. As we spent more time together, I find that no one massages her aching hands and feet. No one helps her groom her nails. I felt so overwhelmed by the need to take care of her, as she did me. Of course, I didn't even ask my husband, but I sent her a letter that I translated into her language asking her to come and visit [at least]. I miss her now that I have found her. I don't even know how to describe my feelings about it.
I find that my cousins, her grandchildren, don't spend any time with her, but see her maybe once or twice a year. They consume all of their time on becoming that successful doctor. One of her three daughters take on the responsibility for caring for her. I feel that she is somewhat lonely, but she spends a lot of time at the Senior Center.
When my mother's mom got old, we didn't put her in a home, one of my aunts took care of her at her home until she passed away two years ago. I guess it is part of our culture to take care of our elders. How much longer can they live? This is like when we were a baby, who cared for us? Our parents. As our parents get old, who will take care of them? I guess some of us think our children will and some of us just knows that in the end, we might just end up alone.
My grandfather passed away about 20 years ago. So my grandma does not have a companion. Who should care of her?
As I suffer from lupus, my husband and daughter are constantly caring for me. I can't imagine what hardships they both go through for me. But here I am, trying to care for another. I am not sure if I can do anything anymore. I haven't been able to make any decisions without "thinking" it out too much. The confusions as to what I want and may want. I have become a totally different person. I don't think that I could be as strong as my grandma.

mother's day...

I haven't wished my own mother a happy mother's day. My uncle called to remind me to do so, but I have all these feelings of neglect that I feel that I should reciprocate. Yes, that only makes me as bad as she was to me as a child. My own family has been very loving and affectionate to me.

I have decided to reply to an email that she had written to me for my birthday. Why not, she did the same?

I've just lowered myself to the same level as my own mother. So much pain and hurt that I can't seem to forget, nor forgive.

sunday...

My weekends seem to past me by...it is Sunday night and tomorrow is a work day. In a blink of an eye, two days pass. I'd have to say it was quite beautiful in Colorado though. I got to stay home a little today, but I still felt tired because I had to wake up to find out that my husband would take care of my daughter today. I'm excited for her, she finally made a team, now I just have to figure out how to pay for it in a timely manner. I wish she would hang out with her ex-boyfriend. They were so good for each other. They have so much in common and they were good friends. Sometimes, her girlfriends have no idea what she goes through. Even her guy friends are more clueless, but for her ex, he is exactly in the same boat as her.

Why can't I just be normal? I guess that is what I'm set out to be. I try so hard. Maybe that's why? Because I try so hard to be normal?? Ugh, sometimes life is just so depressing.

MIA

Missing-In-Action: Definition?? It obviously speaks for itself. I was brought up with both parents being MIA most of the time, but I'd have to say I don't have a dad.
Recently, I have found that I do indeed have a living dad. I have received his phone number, but have decided not to contact him. As I found my dad, I found other relatives. I'm supposed to visit, but then again, my life here is falling apart. I have to take a step back and think of myself and my family here.
Yesterday, my tragedy was finding out that I needed all these crazy tests and crazy specialists for specialists [yes, I did say it twice]. What was even more remarkable was that one of the specialists' office that I called had an office person who worked for one of my old specialist-neprhologist, which I haven't seen since 2000. I have mixed feelings of what I will find or encounter. I talked with my husband about it and felt that it was best to not talk about it until we have some confirmed results. We will just act as always...appointments, as usual, just a lot more scheduled.
I have been bleeding for over two weeks now. Maybe it is making up for lost time? Who knows? I didn't even blink an eye, but my rheumatologist seemed very concerned [maybe that's just his job]. I see a gyn tomorrow, so we'll see how that goes.
I have asked that a celebration be made of my daughter's birthday and graduation, but my family doesn't really seem to care. My daughter's idea was just to have a family dinner. What a disappointment when no one shows. I guess we'll just play it by ear. Life is full of let downs.

confused

I wrote a lot this weekend in a notebook. I have killed my laptop for the time being and until I get another...I guess I will just be blogging little bits and pieces. I wrote a note that I am thinking of sending to my family. But I am unsure -- because right at this moment I am angry and distraught and making a huge decision like the one I am about to make can work against me. I have asked for contact information for the rest of my family and have yet to get it. I believe I asked for it on the 29th. What I really want, is a confrontation with my father and mother. I don't know if I will ever get such a meeting, but I guess if I really wanted to, I could.

Truly hate or just be*littling me??

How my life has changed in the past few weeks, days, hours, & minutes. Things change constantly in my life, revolving round-and-round.

I talked to my mother last night. She gave me a check on Monday for my daughter's sports' fees. Sometimes she helps out with those fees, because it is overwhelming for us. Also, my uncle [my mom's oldest living brother] contributes to her activities as well. My mother and I have different last names, as I was finishing up the paperwork - I thought for a moment, what if they don't credit the "right" child? So [dummy me] calls her up @ work to ask if she could just write the check out to my daughter and I would write a check out of my daughter's account to cover the sporting fee. My mother [who truly must hate me] says: "are you sure this is really for this..." Good grief! I told her she could drop off the forms with the money and just make sure it gets credited correctly. She didn't even believe me [argh!!!] I was angry and argued back. Next thing I know...she [my mother] makes comments that when I was a child that I was L*A*Z*Y [WTF!]. I have written this in many letters to my family, including blogging and even when I have discussions with people I have always referred to having lupus as a child. I have memories, where I was in pain and later realized that it was because of my lupus. I was always a sickly child. I told her: "don't you remember..." all the times that I had to be home sick from school? Where she even had to take care of me? She always claimed it was allergies. I am not that little girl anymore. Word for word: "You don't know what lupus is?" "You have no medical background!" I am living with lupus, every day of my d*mn life! How dare she!! I fire back [of course with my ammunition] and remind her that she was never there for me, that she didn't do anything for me during my childhood nor adolescence. Of course, she reminded me [monetary value] that she paid for my education. Yes, I had an expensive education. I will give her that, but money can never buy back time spent together. Apparently, having the right school, breed, etc., is the way to go...and I didn't go that way. I made a decision, based on what was happening at my life, at the moment, to become a mother that is totally opposite of what I know of a "family" then, she hung up on me. Like my whole life, she drops me when convenient. If she wants to visit, she chooses to do so, but I have no opinion. I can never hug my mother nor could I tell her that I love her...I think inside me, I truly may h*te her. I know that I am supposed to let got of the past and move on with the now and the future. But my childhood is what makes me the person I am today [yes, I believe I have repeated this phrase many times] but it is such a sore spot for me. I went to see my neurologist today. He said that if I feel too sedated then I could cut back on my medication, but at this point, today, he said I would not change a thing. Then of course, he tells me the usual [if I had a nickel for...] "[patient's name] you are depressed and anxious." And until you get through this, it can only get worse. I have spoken to my internist who believes that I am experiencing a short-circuit in my brain, that I need to take medical leave and [attempt] to control it. I am tired of the tests, the medications, the reactions. I just want to be at this moment, left alone. The reality is, if it is not life-threatening, just leave it. I have already sacrificed so much of "myself" I don't even know the difference anymore. I have the choice to "reconnect" but if I choose to. I don't know if I can deal with much more family "issues" than I already have. It is apparent that I will never get the answers to what I am looking for from my mother, the other option is reconnecting to a father [who genetically made me] absent from my life physically and financially. I contend to myself, I was raised by a single mother, if and when I was with that mother. I spent majority of my time being dropped off at various places, sent away, instead of just being my mom. Now I have a family of my own. Yes, I know [they are suffering because of my suffering] counseling. I did therapy, counseling, psychiatrists. All I can say is more "sedation" techniques are used until I am a vegetable. If I wanted to be a vegetable, I would have let go a long time ago. I fight everyday to be here. Why? For my family right? What about me? Yes, I know it is very selfish of me, to think of my own happiness. Yes, it would hurt others, but...life is too short to live "unhappy" feelings all the time, running through your head, non-stop, with no answers. I'm OCD and until I can come to realization that this is it, I will continue to obsess.

my past taunting me

blurbs from a conversation:

Thank you for taking the time to speak with me last night. Although, I know I get very emotional when speaking of my childhood, I understood what you were trying to tell me. I guess my frustrations really lie with my own parents. I can admit that I can't let go and I continue to dwell on it -- but the person I have become today is because of whatever happened to me. As a mother, I am sure you can identify with me, if you didn't know why you were left behind to others [I know Kong Kong and Po Po loved me very much but they were my grandparents], without an answer as to why - indefinitely not knowing is just hurtful. You keep telling me that I should act as Christ would, as our daily teachings tell us to live life as God would have...the reason you told me that you don't speak with my dad is because he could not be with one [woman and/or marriage]. How can I have compassion? As one of his children, all I really longed for was an answer. My mother still stands by her answer: "Your dad could fix anything" or "He was such a wonderful man" well where the hell is this wonderful man? I know she [my mother] worked very hard for my so-called Christian education. I have gone to a Christian school almost my whole lifetime. The sacrifices they [my parents] made are in vain. Here I am, a mother, a wife. My own child does not know Christ, nor does my husband. But they continue to support me in the best interests of my daily decisions. I do not feel as if I should force religion on them as it was forced on me. I know that in the end, it was good for me...the duration, I was spiteful.

hmm...should this be something I should say to my aunt?

realizing...

I have always been told that I look very young. Being asian/pacific islander, that is to be expected. After my grandma had passed away, my grandma's aunt died soon after. I was thinking to myself: "I'm getting old." My daughter and I had to travel to California for the funeral. My daughter and I were travelling alone. It is strange that I remember this...we are at the airport, going through security...unloading all of our stuff, medicines, belts, shoes, etc. It was just a last minute - weekend sort of trip, under duress [the loss of my aunt and the sadness she had right before she passed], after work, kind of late at night on a Friday no less. The security guard helps us load our stuff into a plastic bin, tries to be friendly and I literally snapped. After passing through and going to the gate, my daughter tells me how rude I was to the kind man. I don't really remember the details...but she said that he asked us where we were going, something about hope you have two sisters have good time and I blurted out...something to the effect that I am going to my aunt's funeral...As you can tell, I was quite pleasant. The thought that my daughter and I were sisters?? Pissed me off BIG time. I couldn't relate. But as I look back, that was when I finally realized that my daughter had grown up. Of course, in my eyes, she will always be the little, shy girl, barely making a noise. My daughter did a lot of growing that year. When we had news that my grandma passed away, I called in sick and took my daughter with me to go to the funeral home. My daughter had always been somewhat close to grandma, calling her "grandmama" - I guess I didn't realize much, but my daughter accompanied me to view my grandmother's body. I would have never thought she would go in with me...we literally were right next to grandma as I viewed her. I remember touching the blanket that was on grandma, she was just on a table in a room. Three months later, my daughter accompanies me again - to view my aunt, in her casket, a few days after she had passed. My aunt didn't even look like herself, she was swollen, bloated looking. Three months earlier, at my grandma's memorial, my aunt was all smiles and didn't even look tired. My aunt and grandma were close, they were cousins, whom spent a lot of time together, throughout the years. My daughter showed me her strength and courage. Which encourages me in my daily battles, such a blessing. I love her.

left overs

There are always left overs. It is more common these days. Sometimes I feel like I was a left over. You know how enticing I am? That's how it feels. [Literally].

One of my fears...maybe a long time ago I posted something about my past. But as a young child, my mother, was never a "maternal" mother. It's like she had me and that was it. I find out several years later that it was a last attempt to keep her marriage together. I spent a lot of my adolescent years with other family members, being switched from home to home, never really knowing my parents. Never really growing any roots, my feeling of abandonment came at a very young age. I was living with my paternal grandparents from the ages of 2 to 7. My mother says that she didn't want to upset me much, so she didn't call or visit. My father has always been MIA. He would come when he felt like it, with all his other children and maybe take us out for breakfast or lunch as a treat and then drop us all off. My other aunts and uncles would try to take me for visits and sometimes they would even forget me. Apparently, I get forgotten quite a bit. Can you see the pattern?