finally, insurance??...& message to Dorie

This is what it has come to...I have Medicare A & B, seperate drug insurance, supplemental insurance. I think that is about it...but when you add it all up, wheew! I probably should've stayed on my husband's insurance. IDK, things change from day to day. I worry about everything, everyday or at least that's how it seams. My medication can be so pricey that I would stop taking or take less than what I am supposed to take. Everything is so expensive these days...for instance, I stopped taking all of my anti-seizure drugs. I know that it is a bad thing to do. I have to make sure that I stay home all the time. Going out a seizure just can happen. I find that when I am home it is more calm and I make sure to get a lot of rest. Sometimes that's not enough, but I do what I have to. Now I am experiencing dizziness, inability to see what I am reading and then it blurs out to the point where I have to take a second look and have it explained to me more clearly. This is not a good thing, to skip your medication, but I can't say that I don't because I do, financially, it helps me to get through month to month. Unfortunately, I have so many medical bills (which is a lame excuse, but it is life). Food or medicine, that is what it has come down to...and I have a child to care for...I know that my ability to do many things have ceased, but I still try. I definitely pay for it. I can't walk down the block. I can't watch movies. I can't even get down my stairs on certain days. And the others...I can't even get out of bed. But that's life and I have made my own decisions and deal with what I can.


To: Dorie, I'm sorry that you are going thru so much right now. I have fibromyalgia as well. It sounds like you & your husband aren't doing so well. It is hard on our partners to deal with our disabilities. It is the same for me, I depend on my husband for everything. If he wasn't here...I don't know what would have happened?? SSDI can be a long and excruciating matter. It was practically two years in one month! When, I finally got it!! I was really scared before my hearing as well. I didn't know what we would do if I didn't win. I prayed a lot. My husband took off work to come with me to my hearing. Your attorney will come with you. Be prepared to answer questions...in case the Judge asks you directly, which I assume he/she will. Your attorney will prep you for your hearing. Or at least that's what they are supposed to be doing. The only advice I can give you is to be honest. The other advice about your marriage...I would open a seperate account. You can keep it at the same bank or a different one, but make sure it is only in your name. You should do this way before your hearing. If and when you get approved. Then ask for your disability check to come through your bank automatically. Make sure your attorney knows this as well. This is just some preparation for your future. I guess that's all I can really offer to you. Good luck and I wish you the best.

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.

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.

another day in the life of me...

Today is pretty cold. I woke up pretty late, which actually surprised me a little. I generally don't sleep in past 9 a.m., but I haven't been feeling all up to par. I woke up and ate, then asked for a heating pad and my orthopedic pillow. I am trying to relax before my week starts all over again. My daughter is supposed to go shopping for a homecoming dress. I thought this was something we would be doing together, but she is going with a bunch of girls that she hasn't hung out with in a long time. I guess she is growing up and I need to give her some space. What will she do without me? Actually what will I do without her? Time has gone by so fast and I can't believe how quickly she has grown.

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.

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.

yay, it's FRIDAY!

Second thoughts...it is FRIDAY, yay!! My weekend plans seem a bit overwhelming, but I am sure I will get through it like I usually do.

I haven't been doing much except for avoiding work. I am just not in the mood and I have made some minimal mistakes this morning, but I am not going to point it out unless someone else notices.

Everyone else has left early for the weekend. I am stuck here until five, argh. I should be happy :) Things seem to have been better at work even though I still think the new administrator cannot compare to our old one. She doesn't seem to be computer savy at all. What to do with another person that cannot operate the machines: ERROR, operator error!!

I have a bridal shower to go to, two of them in one! Well I am not sure if we will be going, but I have had the gifts for some time now. I need to put them together ina basket or something. I was going to do a box, but you know how that goes...it just keeps going.

I have been scrapbooking at night which doesn't seem to be that helpful. I haven't gotten that far in the book and I really want to be done. I have to add some personalization to it, but I don't want to sound too bad. Sometimes when I read over something I had written, I can't believe that I am missing words, etc.

Ok, it is 4 on a Friday afternoon. What can I start, that I will be able to finish today? Umm...nothing if you really ask me!!

my fishing expedition...

I'm not sure why I could even begin calling this, "my fishing expedition" since I'm not the one fishing. It seems that there is something inherently wrong with me, what's new? I have several appointments awaiting me. Yesterday, I had someone check out my uterus and take blood, again. Now I need an ultrasound. Argh... I started to fill out some paperwork for my other "new" doctors, but so much information is like digging through the ground with no end in sight. I just burrowed myself in there. I am like their lab experiment gone wrong. If they ever find anything, I'll be sure to post it. That's how much confidence I have in my doctors.

Ooh, I almost forgot, there has been some talk about my gallbladder. Well - I guess it might be SOL now.

Yesterday, one of the older ladies made a comment to me, "age first, then beauty" as I passed her. At first, I didn't really understand and continued on my way. Then later, I took it as I must be oogly or something. So today, I dressed a little more business like and put on makeup. Whew, it has been a long time. I generally don't wear makeup unless it is for a party or something and that is still questionable. I had the hardest time trying to figure out how to apply the damn thing that I put it on and said viola!

Today has been especially quiet. Oh no, I probably shouldn't say that because all hell will break loose now.

I'm not in the mood to work just about now. I'm very weird feeling. I keep waking up at around 2 or 3 in the morning, tossing and turning. Is it a sign?? Probably. I had a dream about work. The last time I had a dream about work, it was about time for me to move on.

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.

disturbing...

I went to see my rheumatologist today. I haven't seen him in a long time, well longer than usual. I was given a page long of items that I need to do before I see his nurse practitioner in a month. This week alone I have two appointments scheduled. I guess I didn't think it was a big deal that I had been bleeding or having my period for two weeks. I have been bleeding for quite some time now. I haven't had a period in over four years. I thought I had gone through menopause. My rheumatologist feels that this is a second priority problem. I have a first priority problem, which seems to be hardest to talk about. I am not sure why? So I have to see a cardiologist. So I have to have a full work up of my heart. I had blood slowly drawn from my arm which was nice [because taking it from your ankles is quite painful!]. Then, comes third priority: gasterintologist [sp?]. When one thing goes away...many accumulates? I had a seizure this past weekend, on Saturday. I have been taking my medication and I just don't know what else is left to do. I have yet to tell my husband and daughter. I have requested the time off from my administrator and hope that it won't be a problem. I think that I shouldn't worry until it is a real problem, right?

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.

woest me

Why, oh why did we have a girl? My husband says that he will start growing gray hairs from all these boys that are talking to his daughter. I admittedly feel the same. I am trying to stay open and ideal, right? What to do?? We were blessed with a beautiful girl. I am hoping that we have raised her well and she will make good decisions, right? Ok, why am I doubting myself? I just want to protect her...but, then again, she will have to deal with it on her own one day. Mom and dad won't be around forever to guide her. I just have to have faith. I just remember when I was that age...how friendships, boys, etc. were so exciting and family was just blah. I wanted to do so many things...but my life was an intention. I was intended to be a mother, a wife and a friend. I have no regrets. I love my daughter and my husband. My life has taught me quite a bit about life, expectations and especially responsibilities. My better half says...leave it alone. My other half says...investigate. What will I do?

strange...

I have had strange feelings since Monday and couldn't put my thumb on it. I wasn't sure what it could or would be. It is like my maternal instinct is trying to tell me something bad is going to happen. It isn't necessarily me either. I find out the office manager resigned yesterday. Oddly enough I don't know if that is good or bad? He has backed me up on a lot of things, but has opposed some things. Generally, always had a hard time dealing with all of us at once. I don't know how much he got paid, but whatever it was, it would not be enough to hear everyone's bickering. I guess I never thought out of all of us, he would be the first to leave. There will be a replacement as soon as he leaves so we shall see how the office reacts to the new person.
I have been having these really weird chest pains. I can't tell what the heck they are, but I wish they would go away. I have decided to make an appointment with a cardiologist, but when I looked it up online, there are so many. I have no idea if I will get a response, but I sent my rheumatologist an email asking for a referral. I don't know if he will respond via email. I have an appointment with him, but not until April. I don't know if I could wait that long before trying to make an appointment with a cardiologist. I guess it isn't that bad -- cause you'd think I would drag myself to the ER room. Maybe it's GERD or whatever, some sort of indigestion.
I got a reply to one of my emails. My immediate response, as my daughter would say, was harsh, but I felt the email replying back to me was very harsh. Who knows, it might just be an immediate reaction?? I have yet to get a response to my harsh email. My family, including I, can be so over-draumatic.