Living With Lupus

Posting re: comment from Roberta Brown

2011-03-23T15:28:00.000-06:00

Ms. Roberta Brown, are you wanting to tell me your story that you have Lupus and continue to work until you are 50 years old? I wasn't sure what kind of question you were wanting or was there something I said that you needed more clarification? Please let me know!!

Thanks!!

Living With Lupus: new things, new ideas & finally new treatment...

2011-03-10T14:39:00.000-07:00

new things, new ideas & finally new treatment...

2011-03-10T14:23:00.003-07:00

Yesterday, what a day!!! Benlysta got approved for treatment in Lupus patients which hasn't happened in over 50 years!! Such an accomplishment which has been all over the Lupus community. I don't even know how to express how I feel about having a drug, finally. I was diagnosed in 1998 and has been dealing with my Lupus till this day. In the past, we had two options: first, you can deny the drugs and just check your body, yearly or even more often. Secondly, you can take the drugs to keep you "comfortable". Being comfortable means that you take the drugs that they think may help the symptoms that are existing at that time and just deal with the complications and reactions from the drugs. You have to make the choice of what is more important...staying around longer to give up another organ. Depending on what type of Lupus you have, some organs are already compromised. As for me, it happened slowly, but definitely. At this moment we are dealing with my liver. This was something that the doctors had already told me would be coming because of all the medications that are given, your liver only can take so much - and after time, it will become one of your "problem" organs.

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

2011-01-21T21:54:00.005-07:00

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.

SSDI; Medicare; Etc.

2011-01-06T22:56:00.003-07:00

Whoa!!! The roller coaster ride has begun. Filing for SSDI (Social Security Disability Insurance). 98% of the time, the initial filing is always denied. Then we had to go through appeals, and I got scared at one moment. The last thing that I had was showing up at SSDI to meet with the Judge. If he didn't find me disabled that I would be left with only one more resource to try to get SSDI. But finally, the Judge did rule in my favor and found me disabled. That is only the beginning...I am married and when I was working, we are consider a middle class family. We had used everything with the exception of one thing. It was a family thing and I didn't know how the family would react. I know that I can sell it for my daughter's education, but other than that...I wasn't sure what to do?? I never was able to apply for Medicaid because my attorney knew up front that I would be denied. You basically have to be below poverty level to get Medicaid help. Now I am thrown into regular Medicare. Whoa!! Take a breath, a long one. Slowly release!! I was insurances under my husband's company sponsored insurance group plan. It was VERY expensive to say the least. But to have Medicare and all the little things I needed because I go to the doctor a lot and I take about twenty pills per day. I ended up with regular Medicare A & B. I had to buy separate drug insurance which shows that I would meet my limit and I would end up having to pay 50% of the retail price of the medicine to obtain, until I get to $4,300. Then the gov't will pick it up again. Yes, it sucks. Plus I pay a lovely premium for this too. Then there comes the medigap/supplemental insurance. It is insurance to help cover things that regular Medicare doesn't fully cover. I had to call about 30 places, spoke to 30 people (no kidding), which in the end - talked to about 50 people approximately for three weeks hounding me about their product and how much it would cost and all the little things, like ratings, the costs, etc. I went with a person, even though he was a company man - I went with this company because I felt really comfortable with him. The only weird thing is that he could never really send me actual confirmation about my policy over the internet???? I had to scan and send my Medicare card to him via e-mail. He stated "Privacy Issues" and that we didn't have secure e-mail. Then that kind of scared me. Does that mean that when I sent my Medicare card that other people would be able to see it? Or maybe they are being very cautious. I don't know. I hope I made the right decision. After everything, I even used a whole journal book from the calls and all the notes that I had to write, plus all the calls that I missed and I had to return calls to those people. Then we have my text messaging and e-mail. I guess we get all comfortable with this technology, soon we won't have to do anything, nor even move. It is crazy how far we have come in the last five years. I wonder what the next five years holds for us? All I have to say -- if I was an elderly person going through what I went through, I don't know how they do it or if they even understand it??? I think I can rest assured right now (Please God!) that everything is in place and that I will just have to deal with going to my doctors and everything just as usual. But after weeks of research, sleeping, discussing, - almost losing my mind. I think that I have some big relief! I am hoping to have a good night's sleep and not deal with that anymore! Yeah!!

It has been a while...let me start slowly with my updates....

2011-01-06T22:26:00.003-07:00

In the end, I finally got SSDI (Social Security Disability Insurance), thank you God! It just took almost two years to get it done. Now I am finally on Medicare, and that is another story that I shall write about because it is a crazy system! I am a young person that can understand pretty much any written information. But going through the Medicare & You is a joke for an elderly person to do. I could barely grasp it after three weeks of investigating. Since I am in poor health, I have to get supplemental insurance, a/k/a medigap. Wow, the salesmen and the crazy calls and how many times that they call you until you finally make a decision and even then they still try anyway. My own family could not get a hold of me because I was on the phone so much that even my phone died and I had to put it on the charger station so that I can still listen and make comments. I swear it is like they are all after your soul!!
Enough of that...I promise to go through my craziness in another blog. Now that I am home. I have started to feel so much better. But don't get me wrong, I have my days, weeks...and so on...there are times that I don't even leave the second floor for maybe a week. When I do feel better, I can schedule to do one thing that day. Adding other things will just stress me out and my body isn't going to like and will let me know it!!! I have pain meds and stuff, but then I don't want to be the person that just looks like a zombie and it is questionable if I even know what I am doing or what others are saying to me. I am totally different. That strong woman has disappeared. I am scared and now it is to the point that I can't be really left alone. It greaks me out. I know that I have dogs and stuff, but I worry about home invasions a lot. I am home about 95% of my time and watching the news is not something you should watch when you are alone. These days, news is just BAD news. I have been really depressed and wonder if I will ever come out of it. I wonder if I am going to spend my life on three anti-depressants to keep me going. I am so insecure. I lean on my husband for everything, but - don't get me wrong. He is a good man. But is more of a monetary person, where I would love to spend the money and travel and enjoy our time going ANYWHERE. He would love to just buy a gigantic TV. It is pretty sad...I don't take a shower without him and if it has been a while since I got a shower, a bath would be necessary. Then I would have to have him be with me. I'm scared to be left alone. At this point, I am not even washing my own hair. Is that weird? Apparently not, because I was watching TV on People's Weirdest Addictions. That stuff is pretty intense. I guess my abandonment keeps reminding me that any day, my husband won't come home. We have been fighting about little things. And one of our new Years Resolution was to fight less. It is only January 6th. Yeah we are making progress on that one. Yeah Right!!! Then there is my daughter. I feel bad when my husband dumps everything on her shoulders to take care ofme when he needs to do something or go somewhere. I feel for her burden and I know that this isn't what a 17 year old wants to deal with. Unable to hang out with her friends, etc. breaks my heart. But I can't have everything, right? I just wont to prosper like everyone else about life. I need my husband at all times. He makes sure that all of my medicines are put out and to feed me and has to give me my medicine with food every morning. Some days, He's such a wonderful man. But most days, I feel the resentment. It is so thick, I swear I could cut it with a butter knife. I know his life can't be all wonderful, but we didn't know that this was going to happen. We just have to deal with things as best as we possibly can, right?

...everything falls into place...

2010-07-29T08:56:00.003-06:00

Finally, things are looking up for us. If we didn't go to court and get a ruling...I would have needed to move in with a relative. Yes, we all know how that feels.
At this moment I haven't really slept at all. I was up at 6 a.m. and I believe I went to sleep around 2ish/3ish? I'm in a bit of pain, but nothing like a few things to help with mobiliity around the house. If I lay sideways, my left eye tears...and it just gets yucky. Then I feel like I have a cold. So I am trying the hardest not to lay down that way.
Hmmm...just right now I feel like I was back at work...calling, IMing, receiving text messages, going online trying to figure out everything for my family. I was just going to try to relax...that went out the door, quickly.
ahhh, okay I'm supposed to be trying to get travel information to go and visit my BFF with the whole entourage! It has been a long time since we've all been together. Who has ever used airplane miles? OMG, I never thought I would be so confused. I want to see how many miles it will take to book a rental car? As I dig around the website...maybe I'll have to call someone that actually has used their miles for anything. I've never used them. I just thought it was nice to collect miles, so why not?
Now I am losing my voice. Yes, I love that feeling, NOT! Today, I miss my friends. I can actually say that I haven't said that in a long time! I've been really depressed and I don't know what else to do...I just canceled one wedding invite, that I had said that I was going to go, but then my health came into play, then I canceled. I feel really bad and I will still send a gift, but now I'm wondering if we should go still? I will just buy a gift in case we go or not - then we will all be set, right?
My Husband has a doctor appointment this afternoon. He never goes to the doctor, but since things are lightening up on my end...we are going to see what's buggin' - you know what I mean. He hasn't been the most pleasant person. And I know the person I loved is somewhere in that mess. I know that he had some issues because of my illness and I thought he took care of it. Apparently, he said something along the lines of ... I'll talk to the doctor and we'll talk about it later. Hmm...I want to go along. But no doctor wants to hear from someone's wife on how their patient feels. Yes, I have too much information on how to deal with an office visit. I guess I try to do the same thing with my daughter...but then again, as a minor, I have the ability to speak to her doctor and be in the room when they go through their exam. Who knows?? Maybe he's having his mid-life crisis. Ahhh, let's hope not b/c I don't think that I will survive one right at this moment.

finally...

2010-07-16T21:11:00.002-06:00

Finally, I got Social Security Disability. It only took a little over two years!! This will save my family home. I have been praying so much. Also, asking prayers from all of my friends and family. At the hearing...I wasn't even sure if it was really approved because the Judge said something...I couldn't really hear, but I know the Judge asked all of us to leave the courtroom. As we left, my attorney turned to me and hugged me and said that we won!! I didn't want to get too excited until I see physical writing that I was approved. My order came today, six pages long, finally at the end - it claimed me disabled. Thank you Lord!! Now, I have to deal with the paperwork to get myself on medicaid and medicare. Which will really relieve the pressure on our finances. I don't even know what to do or say or anything. Ugh, I took a large, deep breath and let it go. It feels light...something lifted from my body, my mind, pressure has been relieved. Thank you, I will keep you posted.

Up In The AIR!!!

2010-02-06T00:20:00.004-07:00

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.

How it Affected My Child

2010-01-27T09:17:00.004-07:00

When Brittany was younger, there were times where should would be waiting in front of the house b/c she forgot her key, but basically it meant that I probably was in a hospital somewhere and Brittany would wait for someone to get her, if I could get through to someone. Then it became all common. The worse part was that she was starting her teenage life, and you know how kids want to be cool and not wear a jacket?? Wearing ridiculous things for whatever reason, but if I was sick on any day and that could be today, tomorrow or a week later. So if it was snowing, she would sit on the step in front of our house with her instrument and wait. Generally I would pick Brittany up from school and if I didn't and didn't get her a message, she would start walking. If I wasn't going to come, Brittany's dad would come home to take care of her, but I would be hospitalized down in Denver a lot, which meant he went down to Denver to be with me. From a very young age, Brittany grew up because Brittany had to take care of me, which saddens me, but what can I do now? It has already happened. When my husband wants to go up snowboarding, Brittany would have to set the alarm at 6:30 on the weekends to get up to feed me and make sure I took my morning pills. I have slow release pills and it has to be constant in my blood or it would just be painful for a while and the other times I would be so zoned. So it had to be taken at the same time everyday.
(*name was changed for anomity purposes)

Happy New Year!

2010-01-05T20:22:00.004-07:00

Happy New Year!!! I know it has been a long time since I have blogged. I have been crazy busy with all of my doctor appointments and my continued battle with social security. I understand that I just have to be persistent, and I shall be awarded at one time in the future (We hope)! Today was a good day for me. I actually got out of bed and took a shower, which is huge for me. I even left the house which is very uncommon for me. I went shopping @ one of my favorite stores. I was so disappointed...I had ten dresses/items to try on. Not even one looked okay. I just looked like an overstuffed sausage. It was just horrid!!! This isn't a New Year's resolution, but I have decided to at least lose 10 pounds. I want to be realistic about losing weight. My husband wants me to lose 20 pounds & my daughter seems to think that I can lose 30! They are both nuts! There is no way, I just want to be realistic so that I won't be so disappointed. I am sure some people know what I mean, right? I just called my pharmacy because I just realized that I was supposed to pick up some meds on Monday. I have supposedly already met my co-pay because I was taken to the hospital for an emergency and I am almost positive that I am probably going to get a huge bill that will cover my high deductible. I was trying to avoid that, but what can I do? I asked not to be taken...but of course they would not let me go. After that incident, I now have to be religious on wearing my Medic Alert jewelry. I was totally passed out and was unable to speak. I guess I just missed a few minutes or up to half an hour of time. Of course there were many questions. But after I woke up, I was able and coherent to say my husband's work number and that I had Lupus. Of course they checked my blood sugar...but I ate breakfast and lunch already. So they gave me some medicine to empty out my stomach. Ugh, this is the second time that I have had that done. It is just awful and pretty gross. Oh well, happy new year to everyone out there :)

home is where the heart is...

2009-05-02T19:25:00.003-06:00

Home is where the heart is...until you run out of money. We are facing foreclosure on our home that we have had for almost 10 years. I was very upset. We can sell it, but I don't want to sell it. Waiting for disability seems to be forever! How can anyone afford to wait for disability? We pay into it for all these years until we need it one day and it takes this long just to tell you no. I know I made several mistakes my life, but my life hasn't always been great to me. I am paying for my pain for not working. I'm going to lose my home. I can't make a partial payment, only a lump sum. I don't have a lump sum. I just want to save my home. How am I going to go on? What do I tell my family? Please God help me. Help me save my home. Anyone and everyone that reads this, please pray for me.

just another day...

2009-04-13T09:59:00.005-06:00

Just another Monday...isn't there a song with that phrase as a chorus? I have a full week ahead of me, also the fact that taxes are due Wednesday. I need to file for an extension, but I have yet to gather all my numbers together. Wonderful, huh? We have had some good and bad news. One of our cars was hit and will probably be "totaled" I'm not too sure if that is good news at all. But now we are down to one car. It was just a long weekend. Easter: our annual egg hunt was successful and both dogs seemed full afterwards. Our older dog was slow on the egg hunt this year, hopefully it doesn't mean his time is limited, right? We did watch Marley & Me and my daughter cried at the end. Everything was due to natural causes and it wasn't like something tragic happened. My daughter played for two teams this past weekend. She played for the freshman team and the JV team. Tuesday there are two games, but one is far away and one is at home. I'm not sure which one she will play and if she will skip her symphony practice. Everything is kind of up in the air right at this moment. My daughter is getting a used clarinet from her symphony. It is such a blessing because we have needed one for such a long time now.

situations

2009-04-06T10:12:00.002-06:00

I had a big evening where I was helping an organization with a dinner. Last week I was able to help with a wedding and I was fine. It was very different this time. I didn't take my afternoon medication because I forgot to do so. I got home kind of late and took what I thought I missed. I couldn't find the stash of medication for the day. It was a very long evening where I felt scared and didn't want my husband to go anywhere. It had a tingling feeling about it too. I felt like I was a bit bewildered. Sunday, I didn't wake at all. Good thing my daughter knew to give me medication. She said that I didn't wake up that she propped me up and put meds in my mouth and gave me something to drink. Poor thing. She stayed with me the whole day as I wouldn't wake. One of our dogs was just going nuts and driving her nuts. She knew that was a bad sign. My husband finally came home and brought food. I guess I ate and went back to sleep. At one point, I had peanut butter in my mouth just sitting all day as I was sleeping, eww, huh? I guess I wanted to share this story because I'm ever so grateful to my daughter, who takes care of me.

spring time...

2009-03-30T09:35:00.002-06:00

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

2009-03-16T14:26:00.003-06:00

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...

2009-03-15T21:13:00.003-06:00

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.

A new week...

2009-03-15T17:56:00.003-06:00

A new week, another day passes. As we are getting ready for to fulfill this upcoming week. Apparently everything I made for last week got everyone a bad stomach ache. I have no idea what I am making for this week, but hopefully we don't all get sick. I think it is more like a virus that is moving through our family. My daughter has been awfully ill these past few days. She refused to go to the doctor, but I was able to drag her in on Saturday. The doctor just said she had a bad cold that is accompanied with a cough.

I tried on y new dresses last night and I have put on some weight. Almost too much weight that I can't fit in two of three dresses. I guess as long as I fit into one. It is quite depressing. The worse part is that I haven't been eating. My gastro can't figure it out, my primary can't figure it out. I have an appointment to meet with a counselor on Tuesday. I don't know if it will help, but it doesn't hurt to try. I have done it in the past and I don't really remember how it turned out. But I am sure we will all figure it out soon enough.

Reading...

2009-03-15T17:39:00.003-06:00

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.

Weather Changes

2008-10-12T21:20:00.003-06:00

The weather has officially changed. It definitely has affected me and how much I have been doing. I just can't do things that I would love to do or even just get things done that I regularly do. I feel my bones are aching. My feet have had some upset spasms.

What does life really have to offer? I wanted and tried so hard to be here at this moment and what am I really doing? I know that I have been told that it is because my family will need me. I know that my family could survive. I always get so depressed during times when I don't feel well and this is just an extension of how I am feeling.

I am still awaiting the decision on disability. But it definitely sounded from their own expert that there wasn't a chance that I could be turned down. I guess I should be hopeful. I'm a young person on the outside, but from within...I feel like I'm 80 years old.

loopholes

2008-09-26T12:04:00.002-06:00

I am still trying to get disability. I get a call from disability, yet again. They want a psychological exam to be performed by one of their doctors and for their doctor to write a report. I don't know if that is good or bad. Having lupus is a invisible to others, except for my loved ones that take care of me. So we all know that it could be good or bad. I am a little anxious.

another day in the life of me...

2008-09-14T12:59:00.002-06:00

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.

long week, thank goodness it is over...

2008-09-13T11:30:00.005-06:00

Well thank goodness it is Saturday, but I feel like my last week is just the beginning of my future weeks to come. Today, I had to get up early to take my daughter to her game. We are trying to relax now until the next game where we will leave in about 30 minutes. I'm definitely tired. My eyes feel heavy and overall my body just feels worn down. Being a mom during the school year with seasons of sports & year long commitment to music, of course we can't forget the exceptional grade average. I have a rule and I know it may be somewhat "extreme" but it has worked for me. My daughter has to bring home all A's. If not, her hair gets cut up to her ears. That is about the worse type of punishment that she has ever sustained. She got her hair cut for one B. She was quite upset, but I had to follow through. I have to say I was disappointed that she received it. And I kind of knew it wasn't totally her fault since her teacher seemed somewhat biased towards her because she would miss his class quite a bit for sporting activities.

Grandma

2008-09-10T22:09:00.002-06:00

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.

physical therapy

2008-09-08T16:01:00.002-06:00

I just had my last physical therapy session for the year 2008. Apparently because of my insurance there is a cap for twenty visits. I still have pool therapy because that's about the only exercise I really get. I can't even find my one-piece swimming suit. I might have to brace them with my bikini. I just try not to do that to anyone because I wouldn't want someone else to do that with me. My mother spent time with me today and the whole hour and a half was enough. She is over again for a few minutes and she is driving me nuts! Why does she have to insist on everything -- her opinions of people on tv to where my daughter is supposed to go to college is driving me CRAZY. Argh, hopefully I don't bite her head off.

missing

2008-09-07T20:15:00.002-06:00

Right now I am missing my grandma. I talked with her earlier for a few minutes [as usual]. I just missed visiting with her. I went to the asian market today to pick up a few items and so many things reminded me of her!! My life is just so crazy right now with my daughter and my doctor appointments. I have left my wife duty as my last duty. Will I pay for that?? I am sure in time. My husband continues to support me, but sometimes I feel like he may be bitter because I am no longer working. There are days were I just can't get myself out of the house. I get scared. I get scared of the unknown or the known. Sometimes knowing too much is hurtful. I just need to take a moment and breathe, right? I hear my daughter whining in the background as she begs her father to take her somewhere [probably sonic]. Good thing we only have one child because I can't imagine two whining children. As my mind is being so random...what do I get my grandma? Her birthday is coming up this week. I want to send her a card, but I can't finish one thing. I just start projects and leave it right smack in the middle. Is this an ongoing obsession? Yes, it is. I need to fix it or else my life will just end up as an ongoing project of many nothings.

I wonder...

2008-09-05T10:48:00.002-06:00

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.

2008-09-02T20:40:00.002-06:00

My daughter made it! Not only did she make it, but she made the wind ensemble as well. It was a rough time for all of us, but I'm happy she made it. I am not sure about practice times - which seem to be very lengthy for a youth group. 4 hours in one day. She will be having a heavy work week, every week for at least 8 weeks. I am confident she will be fine.

As far as getting along...she now has a boyfriend. I have no idea how she plans to even deal with boy drama at this time, but she has already said yes. She needs to tell her dad about it (which she has been worried about from even before he asked). I guess this is all part of high school. I just know it has changed a bit since I was there, which wasn't long ago.

I guess I am hoping that the lessons I have learned & have taught her will show.

daughter's audition

2008-08-29T15:30:00.002-06:00

Today, my daughter has an audition. She said she doesn't feel very lucky. I told her it wasn't luck - she has practiced long and hard and is very able and well prepared. The only problem is that she gets seriously nervous and forgets everything. I just told her to try her best and not to let it get to her. Hopefully she will do okay. She has practiced all summer long for this audition, even through her being sick, six days a week. I just told her hard work will pay off and she will be fine. Now, I am nervous for her. I'm trying to be relaxed about it. I told her that we would go plenty early so that we won't get lost and she could have ample time to warm up. Tryouts, auditions, etc. are we pushing are children? I don't really know. I know when she wants to do something, she is very strong willed. She crumbles under pressure. I just told her if she would play as she does at home or in lessons she will do fine. They are only taking two or possibly four and we are hoping she will be one of them. I have to take my daughter to the doctor tomorrow because the antibiotics didn't work. She has been on them for 14 days. She sounds like she is coughing out her lungs.

Recently, she finally found out the name of the boy in one of her classes - business foundations. At first, she told me that there were only five freshman, including her and the others were geeks. Now she talks to him via text message. What happened to actually speaking to a person face to face? I guess I am really old, ha!

I got my disability forms today to fill out. It has been very ___ what's the word? but I have been exhausted by filling out all the questions on how lupus has affected my life and what restrictions and activities I have given up. It seems very depressing when I had to list out and think about everything I had to give up. What has happened to my life? Do I even live a life? Apparently not from what I have listed.

Dog

2008-08-25T15:53:00.003-06:00

Today is my doggy's birthday. I generally get him a special treat from a bakery in Boulder. But today I don't have any plans to drive into Boulder. I am not sure what we will do, but every year I take pictures of my "loved" mutt with his birthday dish. He has already opened his gifts. Who knows if dogs even love those things?? I got him a new doggie bowl, stuffed animal, & a kong kind of thing to wrestle with. He turns 8 today, which means 56 in doggie years. I hope he has many more years left...because I don't know where I would be without him. I never thought I would ever have a dog, but he is almost like my best friend. He is my companion for majority of the day when I am alone and sleeps with us at night. So in reality I am never alone. I may pester him or do silly things to him, but I guess that's how I show my love? Sometimes I wonder what do our dogs think of us? It was silly of me, but one time I did ask about a "dog whisperer" - and have heard strange things about it. They don't even need to see your dog or that it could just be done over the phone, etc. Like fortune telling at a festival.

I have physical therapy today in the pool. That's majority of my exercise so I try to keep up with it at least twice a week. Ideally, it should be three times a week.

Mommy Dearest...

2008-08-25T11:17:00.003-06:00

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

2008-08-24T01:26:00.003-06:00

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

2008-08-22T12:20:00.003-06:00

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.

everyday BURDENS

2008-07-24T12:59:00.003-06:00

Here I am, staying home to get better, right? I'm not sure if I am happier or more depressed? My daughter refuses to leave my bedside thinking that I won't wake up after my naps. She is 14, this is the time she spends with her friends having fun. I keep encouraging it, but there is always something...I have filled my days with endless tasks. I try to move it around so there are days where there really isn't much going on...like today. I have a massage scheduled. Due to some unfortunate events, the carpool won't work today. So I have to rush my daughter to camp. I would ask my husband, but he has been stressed out to the tee. I did a phone interview yesterday, taking a significant pay cut, but a job nonetheless. I don't know how long I could last working. I could barely be here and I am at home. Am I asking too much for a regular life? I'm a burden to my daughter, to the point where she won't leave me alone. My husband is working more and more so that he can support us. I really hate feeling this way. I just want to go away and not think about being sick. I have another doctor's appointment tomorrow morning. I am tired of being pushed this way and that way. I am obviously just barely surviving.

hi there :D

2008-07-21T22:10:00.003-06:00

Thanks to the random people in my life, who help by listening and showing me that there is much more. I have officially re-started bible study. My mission is to read the book of Matthew. Or at least that is where I am picking up :) Thank you for listening, as always.

the EXTREME heat

2008-07-19T17:43:00.003-06:00

Today was a very HOT day. I went to church with my family with the exception of my husband. He has been working every Saturday because he is trying to make up for my earnings. My church doesn't have air conditioning & it was almost horridly hot. I think that being spiritual helps me get through my rough patches. Sometimes I get angry at God wondering where he is and why isn't he helping me?

I have been officially disqualified from unemployment. Now I am not sure what to do? I got the disability forms in the mail from the Social Security Administration. My husband wants me to apply for disability and I have a hard time accepting it. I heard it is hard to get on disability. I don't know how much work I can really do and be productive.

My family (husband & daughter) has been so wonderful to me. They have been getting my drinks and helping me around the house and also while going out. I have been able to use my wheelchair but other times I don't want to. Both of my arms, wrists & hands hurt badly. I can't lift anything more than a magazine. When I go grocery shopping it is the worse. It is very painful. I usually have to put lidoderm patches.

I do my physical therapy twice a week, in the pool, electrical stimulation and massage. Stretching seems to be the most important key to pain management. I didn't realize how much more it helps to stretch instead of taking another pain pill. I just did another DEXA scan, plus I did the modified berrium testing last week. I guess I should know some results by Monday. I have two appointments and one on Wednesday. Hopefully it turns out okay. My rheumatologist seems to say that my lupus is doing okay. But I know sometimes when I stand too long my knees hurt and turn red.

Well wish me luck in getting disability! I have an appointment in the office in August. Hopefully it won't be such a pain to get.

hmm...?

2008-07-14T22:56:00.001-06:00

I am not sure what I am doing these days...I have been unemployed officially for almost a month. I have so many errands to run each day-to-day that we never really get to enjoy our days. Now that has to suck more than working, right? Who knows?
Nowadays - I just wander around. Hopefully I will find my way.

terminated...

2008-06-24T23:27:00.002-06:00

Today, I was terminated from my job. I have never been fired before and could use some advice. I was given a paycheck that paid me until the end of the month. Since I have never been fired before, I was asked to sign -- something like a settlement agreement to receive one month's severance pay. I have no idea?? But if I don't sign it, I just don't get paid for an extra month. So many debts and obligations overwhelm me, much more is my medical condition. I understand that they have paid my premiums until the end of July. I was in total shock. I guess because it has never happened to me, I wasn't quite sure how to react.

who has problems, me, nah?

2008-06-11T14:23:00.002-06:00

Of course, we all endure problems - especially day-to-day. I just find it so much harder to cope with, as I get short-tempered with some people. I try to be polite, but other times, I think I might lash out. It really isn't the person (maybe), but really - I've always gone by the saying: "treat others, as you would want to be treated."

Right now, everything is in the spur of chaos. I am trying to keep myself calm and just prioritize one-by-one. Lately, I've been coming home late. It has taken it's toll and I'm seriously tired. I didn't want to call in sick because I'm on the verge of being fired (I think?).

friends...and WORK

2008-06-09T14:18:00.003-06:00

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?

2008-06-09T13:48:00.002-06:00

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.

boys...

2008-05-25T19:22:00.002-06:00

I know that one day my daughter will have to deal with boys on her own. I finally owned up and really admitted that I liked her boyfriend. He was good for her, actually they were good for each other. Much in common. I realized that when I was her age, I was dating...rebelling...picking boys that I definitely would not want my daughter to be hanging out with. I always had a streak for the really bad boys. And I guess my innocent self always got the extremes. I know that she is very different than me, hopefully she won't make the same decisions I did. Sometimes I wish she would get back together with her ex-boyfriend and I wouldn't have to worry about her so much.

I guess I need to just deal with life. It isn't always what we expected.

out and about...

2008-05-25T19:11:00.002-06:00

Today, I was out and about. My daughter and I went out to meet up with her friends and their families. My daughter passed out. I'm tired, but I'm still up, trying to get un-tense. I did some walking, well maybe a lot of walking.

I just took benadryl and had lots and lots of salad. What if I am allergic to salad? It could be my salad dressing?? I don't understand why it is so hard for me just to eat?

Tomorrow is Boulder Boulder. Thousands of people from everywhere come to participate in such an activity. It was very crowded. This was the first time I didn't take xanex to deal with the masses of people. I think that's an improvement.

Thank you for a good day :)

mother's day...

2008-05-11T21:22:00.002-06:00

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.

Keeping Up...

2008-05-08T12:46:00.002-06:00

As I probably said somewhere in this blog that my rhuematologist gave me a whole list of things to do, including:

see the Cardiologist; see the obgyn; see the gasterinterologist(sp?).

I went to see the ob/gyn, had a pelvic ultrasound, outcome: unknown. Symptoms still persist, bleeding.

I went to the cardiologist, had an EKG, ran on a treadmill and almost passed out, had a heart ultrasounds, outcome: everything is ok - as in cardio(wise). Symptoms: chest pains.

I went to gasterinterologist, had an Eg-D (no idea?), outcome: dilated esophagus and put on Nexium. Biopsies were taken from the edema areas, redness and irritability noted and a ringed esophagus (?). Symptoms: inability to eat, nausea, digestion.

I did all of this in less than three weeks and suffered ilke a crazy woman yesterday because I didn't know I was given versed (amnesiac) so I guess I wouldn't remember the procedure. I wouldn't recommend going to work the next day, which is what I did. I must've been a real "air-head" coming into and out of consciousness.

My ongoing saga of bleeding, maybe my mensies, maybe something more? Who knows? I have a nurse practioner that I have never seen, just out of school, obviously doesn't have much patient/doctor relationship skills.

What I've Learned: You can be squeezed into a guinea pig, but unless you try all options, you will never really find the cause or cure for whatever you have, but I know that I can swallow now. Yay!! The gasterinterologist would have been the last person I wanted to see, but I couldn't deal any longer!!

sunday...

2008-04-20T21:03:00.002-06:00

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!

2008-04-18T15:59:00.003-06:00

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...

2008-04-17T13:04:00.003-06:00

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

2008-04-15T14:11:00.004-06:00

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...

2008-04-14T19:11:00.003-06:00

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?

Lupus Awareness

2008-04-04T15:51:00.002-06:00

"still trying to spread lupus awareness and hopeful to be successful"

This is what I keep telling myself as I try to get any information out of my facilitator to help me move forward on trying to acquire meetings and proposed sponsorships. It is so hard to get people involved in anything these days. I just wish I had more walkers. Even with the donations I receive, still it is yet to make any difference. I want to plant a seed, water and watch it grow. But, I have yet to make that happen.

Am I just wandering around alone? But we all know I am not...but I am not sure why it is so hard to spread awareness? Lupus affects how many millions of people? We are obviously looking for answers...but no one is really willing to get out there and do it. So why should I try?

the agony & pain of my ARMS

2008-04-03T20:06:00.002-06:00

I never really realized how hard it would be not to use my hand or arms. I had to rest them, they were both beyond pain. I did everything to numb them and decided that I should try resting to see if that helped. Today is the first day I am at home kind of early because my daughter's practice was cancelled due to weather. I try to do the little things [that I think] make me happy. Until exhaustion overwhelms me. I had a good day today.

I finally asked for time off to visit with my family. I have yet to find out because [apparently] I have to ask the right person.

long day...

2008-04-02T23:14:00.002-06:00

Today I finally got home at 11 p.m. My days are getting longer and longer and have I accomplished anything, except exhausting myself to death. Too many things to do and not enough to do it in.

My arms and hands hurt so badly. I had to put lidocaine patches on and put ace bandages over them. Yes, I looked like I tried to commit suicide. I took the pain pills and stuff and nothing is helping.

I am having tons of headaches, so I think I will try to ease off on the blogging.

tired

2008-04-01T21:38:00.003-06:00

all of us are tired...all of us are dragging our lifeless bodies around...everyone seems to have a temper...and yet there is no feeling of any relief in future.

I came home today about 9 p.m. I had to wrap up my left wrist and lower arm because it hurt so badly. It had been bothering me all day, but I continue to ignore it. I finally came home and decided that it had to be wrapped. I am almost ready to take pain meds, but I am trying to hold off.

My daughter lost her IPOD. My husband just got it for her not too long ago. Either someone took it or she dropped it, then someone took it. I already e-mailed the administrative lady at her school to let her know if someone turns it in, if they could let us know.

My husband is being very ass like today. I guess I shouldn't say that, but I'm in a terrible mood and all he can do is ask me questions that make me crazy right about now. I just need to take some "me" time and relax before I take it out on my loved ones.

confused

2008-03-31T13:07:00.002-06:00

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.

i'm oblivious

2008-03-28T18:39:00.002-06:00

I'm oblivious to the obvious. It is so weird how things just seem to work itself out. It could be a matter of time or just...

My daughter is reading, The Diary of Anne Frank, First Anchor Books Edition, March 1996. It is so weird, but I guess it shouldn't be, but I read this book as an adolescent. I don't remember any details except for it being a bad time, war.

Is that so bad that my memory is only limited to that? I guess I could say that I don't remember anything, but I do. The things that I think about in my head, basically gets lost in translation, before I can type it. I almost feel robotic about it.

I am 31 and my daughter is 13, ironic? Nah, it is just a counter of our lives. I am looking for a book. I vaguely remember it, but I have no idea where it is. I have looked in all the usual places, but still I can't seem to find it. My options are pretty limited, if I do indeed have the book, it is probably in the basement. My reason for the search is to find a picture, a rare one.

Dear Auntie

2008-03-28T13:31:00.002-06:00

My dear aunt. Her birthday is just 'round the corner. I found an old picture of her, from maybe 15 or 20 years ago. I have been thinking of getting it framed in rememberance [yes, she is dead] of her. I don't want to hurt her family's feelings and have thought: maybe it is just best to give the picture to the family and let them decide if they would like to frame it? I know the family has been heart broken over her death, but it happens.

Medication of the Day

2008-03-27T18:28:00.002-06:00

At my neurologist appointment, I always notice how quick they are to try more and more medications. Effexor is the newest one. I don't know if I want to even try it. But apparently, this is my next move. Should I?

Truly hate or just be*littling me??

2008-03-27T18:06:00.002-06:00

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

2008-03-24T14:12:00.002-06:00

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...

2008-03-20T12:45:00.005-06:00

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

2008-03-19T08:44:00.004-06:00

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?

confusion...emotions?

2008-03-18T23:25:00.003-06:00

I came home...from my aunt's house. My daughter and I had dinner there. It was total chaos when I got home and my husband was upset at my daughter because she had done her chores incorrectly. I get a call from one of my closest friends, asking me details about my childhood. Darn, if I could even remember details of this morning, that would be amazing. Apparently, I might have found the other half of my family. I was filled witih many emotions. I first sent an email and a scanned picture from my wedding almost 14 years ago. I'm ot sure what I would ask...but it would be especially important to get my health history and find out if anyone in their family has had lupus. I would be able to have some closure on that chapter of my life.

dimentia

2008-03-18T16:35:00.002-06:00

I have a family history of dimentia. My maternal grandmother suffered from it, but lived a long lengthy life until her mid 90's. She passed away in August of 2006. I wonder if dimentia is hereditary? I guess you can catch anything these days from the water we drink to the food we eat, someone always has a comment. I am 31 years old and I feel like I am 80. I can remember some things, but in the blink of an eye...it is forgotten, almost like the wind, gusting through. I have random thoughts all the time. It could be something I just remembered to do or merely a weird fact. Sometimes I laugh at myself when I catch myself thinking of it. I just talked to my aunt. She is the youngest of my mother's sisters -- she thought she had to pick up my daughter from school to take her to lacrosse. I sent her an email stating: can I come over while [my daughter] is at lacrosse? I don't even begin to know how she got picking her up for a game? My evenings are kind of the same thing...come and go. I may wake up, I may just sleep like the dead. Other times...I sleepwalk and do things...which upset my entire family. But actually, my daughter says I am much better at waxing her in my sleep! I guess realistically, I just hope I don't get to inherit this...since I am already confused. I can't imagine myself at that age...knowing what the hell I am doing?

Humane Society...Volunteer?

2008-03-18T15:41:00.003-06:00

My daughter loves animals. I always try to encourage giving back to the community. As you already know...we feed the local homeless shelter, but only once a month. We had attended orientation for the local humane society. Saturday, March 15, we had an interview scheduled. For now, she is scheduled to become a kennel assistant. My daughter is 13 years old. She decided on her own that she wanted to do this. This is a huge commitment, not only for her, but for me. Because she is under-age, I have to be with her at all times when she is volunteering at the humane society, in any capacity. This means we signed on for six months, two hours per week. With everything else that is going on in our lives...who knew we could do so much for our community? Here I am, partially incapacitated, generally - my daughter takes care of me, especially when I get confused later in the day. Sometimes she can be so mature and other times, she is just a girl, a teenage one at that.

the teacup

2008-03-18T15:24:00.002-06:00

I am like the tea bag, that slowly emits my emotions, but if the tea bag tears or breaks -- I explode. I obviously survived my down day. I took a little too much xanex or something...and I was so emotional. I barely remember the day. My errands were given to "daddy" - ha, I'm like get over yourself...this is my everyday!
Last night, I was on the phone with a prospective clarinet teacher for my daughter. My daughter has decided to quit band when she starts high school. She has been playing the clarinet now for at least three years and has had both band and private lessons for these past years. Also, she has played the violin, suzuki method and the traditional method, but we learned [a little too late] that the traditional method was best. 1/24th of a size! It was tiny, like a doll's little accessory. Okay, back to my little story. I am not sure what I was looking for...but I asked the general questions. She happens to know her [my daughter's past instructors], she didn't have much to say about them. I guess we live in a somewhat small community and it wouldn't take much to bring down a person and find out who said it. I believe that having music in a child's life, helps them organize their time, using both parts of their brains [my own thoughts...]. I know everyone has different thoughts as to what is best for their child.
Did I say...I found her past instructor, who taught her privately for about two years. His lessons were long and drawn out...but he really broke it down to her and gave her the history of it. He gave her -- ugh [metronome], his first to ever use. He was always so caring and able to help her, even when she was very shy. I had to sit through those lessons. Even when I had experienced kidney failure, I continued to go to these lessons, even if it meant someone had to drive both of us. That was when she was doing both violin and clarinet lessons, every week, with an activity.
Now everyone always says/posts/writes: that we overburden our children. I think there is truth to that. We want to give our kids every opportunity out there and if they choose to continue [or if you choose it for them] that they can derive whatever is needed, no matter what it takes out of you and your life. That has always been my husband's ultimate promise to me. To give our daughter everything that we never had, the attention, the details, etc. Which is encumbant of my everday life now. I did all the volunteer things, up until she said "mom, you don't need to do this anymore, i'm okay." Recently, I don't know if I had posted this prior...but her language arts teacher asked if I would come in and volunteer my time. I said I would try...being that it is my daughter's eigth grade, last year in middle school. I work full time about 20 minutes away. I have taken lots of time off because of my lupus and I think that I should be able to squeeze in time for my daughter's teacher. I am very young. I learn everyday, something, if anything -- new. I have an attorney that I work with...I call him Mr. Know-it-all. I am always trying to figure out what my brain is thinking, but it never comes out. I guess with all the drugs I am on, what am I to expect??

meltdown...

2008-03-16T15:42:00.002-06:00

I have always been very strong willed. I always promised myself that I would never let this disease take the better side of me. But what can I really control? I have been under aggressive therapy for how long? A decade? I take all of these drugs and I am frustrated. They mask everything or only give me little relief until something else breaks down. I hate my body. Today, I said things that I would never say. I wanted to die. I have to fight everyday, to get up, to go to work, to be a mom, to be a wife, etc. I don't think that I am doing a good job. I am just so overwhelmed with all of these feelings of frustration. I feel alone. I just want to live my life out. My head wants to explode. I have taken vicoprofen, xanex, keppra. I am still sitting here trying to figure out next week. I sent my husband on errands so that I could be alone. I cried all afternoon. It did nothing for me to cry. But it was somewhat of a relief. I love my family. I know that it is so hard to understand how I feel and I take my anger out on the ones that I love the most. Why do I have to suffer? Why me?

friends or not?

2008-03-14T18:32:00.003-06:00

My daughter has many friends. Her friends seem to change all the time...I'm not sure why?? My friends are still the same friends I have had since my childhood. I continue to make new friends all the time. I thought I met a woman that would be life changing. The only thing that stops are friendship, dead in its tracks, is because I made a comment about things I have heard of her daughter. [I guess, I would be defensive too, but] her daughter lets others [yes] including boys, smack her ass. I guess this shouldn't be too surprising because the last I think I had heard was how she would always hug all the guys at school. We all know the boys are going through puberty right now - they are teens, what should we expect? But even the boys avoid it being pushed on them. I heard today, she was showing off her boobs. Nice, huh? She responded to my daughter by saying I could see down her shirt. My daughter was sitting on the ground. This girl was leaning down so that Sam and her friend [who happens to be a boy] see down her shirt. My daughter's friend is beautiful and definitely has assets. This is not the only thing this girl has done...but we won't go into those details. I guess I have lost that friendship, it was definitely a loss -- someone so close and awesome going through some of the same things I am. I guess that's just a part of life.

Today was a busy day at work. I have yet to get accustomed to the time change. I hate waking up in the dark. I have been waking up at odd times which has made me seriously GRUMPY. Everybody is in a wrinkle...the women are seriously butting heads big time with the laid back gals and the stressed ones. I don't know how much more intense it could get, but apparently this has happened for a long time. So I am sure when things settle down...it will be better. I had lunch with a friend today. It was nice, just to chit chat and get out of the office for a little bit.

woest me

2008-03-12T18:59:00.002-06:00

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...

2008-03-12T12:42:00.003-06:00

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.

Geeze...

2008-03-11T14:39:00.003-06:00

Geeze, I just lost my whole blog! Now I will have to try to remember all the things I said?? Hmm...

SLEEPWALKING
I can tell I was sleeping while I was typing "World Lupus Day" because I had to make minor changes to spelling and some grammar checks. I have always had a problem with sleepwalking, ever since I was a small child. My mom used to tell me stories, where I would pick up magazines and try to go out the front door. Until this day, I still do the same, except I actually sew, post blogs, pay bills, etc. I think you get the point and of course, while I am sleeping I can make some crazy mistakes. I get very emotional as well -- I talk on the phone, write letters, yes, I am starting to sound like a crazy psych patient.

LUNCH
I ran to the grocery store. Even though I sent my husband to the grocery store three times last night and he forgot to buy my kleenex for my car. I have to have the small one that fits in the middle console. Yes, I am OCD like that. I bought a few extra to keep in the trunk. I have tissues every where in my house. I use them every day. And it has to be a certain kind. Kleenex brand with lotion. I bought dinner and snacks, brought it all back to work and marinated and cut up veggies and fruit.

LACROSSE
I have to pick up today and Thursday. I am the "pick up" parent, plus the uniform parent. I hope my daughter took the sandwich to eat inbetween school and lacrosse practice or else, she will be starving and possibly might faint!! Even though I am bringing food I have doubts that she will be able to eat right away after practice - anyhow.

SHELTER
Last night, when I ran to pick up my daughter from the homeless shelter, I got dragged into serve...so we were there till pretty late. I ended up bringing food home that we served and just ate really late. By the time I got into bed and started doing stuff it was way past my bedtime.

HISTORY
I would like to know a little about my family history. I only get to know one side. I have many questions, mainly about my health, but just general ones will do. I guess you could say that my "inner" fears are holding me back. The separation or whatever it is called - caused trauma, now it always triggers the memory of being left behind. It is crazy, because it has been years and years now and I have yet to visit with my other side of the family.

The World Lupus Day Proclamation

2008-03-10T21:06:00.003-06:00

WHEREAS, Lupus is an autoimmune disease that can cause sever damage to the tissue and organs in the body and, in some cases, death; and
WHEREAS, more than five million people worldwide suffer from the devastating effects of this disease and each year over a hundred thousand young women, men and children are newly diagnosed with Lupus, the great majority of whom are women of childbearing age; and
WHEREAS, medical research efforts into Lupus and the discovery of safer, more effective treatments for Lupus patients are under-funded in comparison with diseases of comparable magnitude and severity; and
WHEREAS, many physicians worldwide are unaware of symptoms and health effects of Lupus, causing people with Lupus to suffer for many years before they obtain a correct diagnosis and medical treatment; and
WHEREAS, there is a deep, unmet need worldwide to educate and support individuals and families affected by Lupus; and
WHEREAS, there is an urgent need to increase awareness in communities worldwide of this debilitating impact of Lupus;
NOW, THEREFORE, BE IT RESOLVED that 10 May, 2008 is hereby designated as World Lupus Day on which Lupus organizations around the glove call for increase in public and private sector funding for medical research on Lupus, targed education programs for health professionals, patients and the public, and worldwide recognition of Lupus as significant public health issue.

monday...

2008-03-10T14:40:00.002-06:00

Another week has passed and here we go on to the next one. My crazy life is just filled with so many activities, it could make your head spin. I had to go over to my neurologist's office today to pick up some samples of Lyrica (Yes, my pain in the ass insurance gets funded on the 15th and today is the 10th). I was having chest pain, but I have had it over the weekend. It is like when my hand or leg starts to cramp up and I have no control...like the blood accumulates in an area and it hardens, turns kind of purplish and I have to massage it or almost hit it to let go. I have been having that on my chest. Moreover to the left side and I massage it throughout the day.
Local Homeless Shelter
Tonight, my daughter and I go with our church to feed the local homeless shelter. My aunt buys all the food (funds from the church), they prepare it, cook it and then serve it. Since I am working, I will only serve and help clean up.
8 to 5 Grind
Today, I go back to working 8 to 5, like the normal person. I generally work 8 to 4:30 in the winter because of light issues. I have night blindness. I really depend on my navigation when I am in areas that I don't know. I try to stay to areas where I know and have memorized streets and fixtures.

movies

2008-03-09T13:52:00.003-06:00

Both my husband and daughter went to the movies, without each other of course, but to the same exact movie. I am supposed to say she went to College Road Trip and he went to 10,000 b.c. In reality they both went to see 10,000 b.c., but he went to the 1 p.m. one and she went to the 1:45 p.m. She went with two boys. I know my husband will have a cow. She claims to tell me the reason why she hangs out with those two boys is because there isn't any girl drama.

time changes today

2008-03-09T10:41:00.002-06:00

We spring an hour forward today. Good thing I started changing my alarm clock last night. It kind of helps with the transition if I try out a day with the new time. I feel as if my itch in my throat is getting worse. I just don't want to be sick, yet again. I am hoping that it is just allergies and it will GO AWAY. I just took 50 mg of Benadryl.

fatigue or laziness...

2008-03-08T17:00:00.002-07:00

Today, I spent almost all day in bed to make up for all the activities going on last week. I slept, watched tv and ate. That's about it. Nothing productive at all. My daughter begged me to take her anywhere, even the stationary store (she hates the stationary store). All of her friends are busy. This weekend the time changes. I know I just don't adjust well to changes. Hopefully I will be able to last at work. I always seem to have that problem when the day gets longer. I took all my usual pills and then some. I feel swollen. I have been taking my diuretics, but I don't know...when I eat I feel like I have bad heart burn. If I don't eat I'm tired. Well my daughter is having her cycle for the month. I haven't had a period...for more than a few years from the chemotherapy treatments. It is so weird when I have to buy stuff for my daughter, so many choices, so many different brands. I feel like my body is trying so hard to have a cycle when my daughter does, but it just doesn't happen. We all get cranky, swollen and just feeling like crud. I know my husband understands that I battle fatigue everyday, but today, I almost felt like I had become lazy. How does one really tell the difference between fatigue and laziness?

too many?

2008-03-07T20:35:00.002-07:00

How many diagnoses does a person need? As much as they ask for? For as many symptoms as they have? I just know that I have many, to the point that sometimes I can't remember all of them. I know for sure that I can't recall all of the medications I have taken or even tried. I want to know why: (a) an answer; (b) the patient will stop harassing; (c) have no clue? The money that is spent on health care is amazing. I can't even begin to tell you how much I have spent. Especially on medications. Were they really necessary? I was surviving at one point without any medication, now I have a whole cabinet full of medications that I am supposed to be taking. The only way that I have found to get off a medication, is to just stop it myself. Say, "oops, I forgot." And I have survived. But others...(my doctors) say that if I stop, that I will die. Can they be ever so blunt? That my life counted on several mixes of pills depending on what kind of symptoms. I am allergic to what seems like EVERYTHING. I see specialists in all kinds of fields and yet it is never enough. The testing...has to be the worse. Yes, for one, two, etc. You will need this to fix this, that, etc. I am so fatigued. But I can't rest. My anxiety overcomes me. And here I am, blogging. I have pain medications, but I don't want to take it because my bowels are bad enough as it is. I have lidocaine and frankly, it is just GROSS. I've done many nasty things for treatment, but this is just insane. Taking the multiple laxatives...stool softeners...enimas...high fiber diet...nothing works.

sleeping mix of the day...

2008-03-07T17:56:00.002-07:00

1 mg Xanex
10 mg Ambien
50 mg Benadryl

TGIF

2008-03-07T17:46:00.003-07:00

Friday, my favorite day of the week!! I am trying to relax from my day at work. I just got off the phone with my uncle. I had asked why, after numerous attempts to talk to my cousins and nephew, I have been ignored. My daughter gets along with my nephew, her cousin, but we live a bit far from each other -- about an hour. I have offered to get him and bring him back. Or just do something in his neck of the woods. No, nope, nothing, not even a response. I guess I should take that as a hint? Apparently, my uncle has told me that him and his wife had been going through some marital problems. His wife "apparently" read some of my emails to him and felt that I was his "advisor" and encouraging a divorce. My uncle is years older and much wiser than I. I was trying to be there for him, when his family annihilated him. I told him that I visit with him and a family lawyer if he chose to go to one. I work in a law office, but I am not an attorney, nor do I pretend to be one. But his wife has portrayed to the rest of my family that I am trying to break them up. So my daughter, who has nothing to do with any of this...wants to spend time with her cousin, can't because of some emails that were written between myself and my uncle. Retarded, right? Sad and disappointed. I have at least tried and extended an invitation and if they choose to continue to ignore us, then what else is left? I guess we resume our other activities. What does that teach my own daughter about family life? I hope that she is a devoted person to her family. My family is priority, always. I guess we can't pick who or what our family is, we are just born into a family, supposedly. Life.

another parent meeting

2008-03-06T21:05:00.002-07:00

Indeed, another parent meeting. I have made it through the hour long meeting and have already sent out an email to the coach to ask any other questions that I may have missed in the meeting. I am scared that my one and only child will be cursed with the same disease. She has symptoms of arthritis, but then again I could just be biased. I want her to do all the things that I used to be able to do and now I have no control and no ability to do so. Even the little things like opening jars...when that finally happened...I was saddened even more. It seems as though a little of me, leaves me, every day, hour and minute.

lagging

2008-03-06T08:54:00.002-07:00

This morning was quite the painful experience. I could barely open my eyes and my right eye just aches. My feet ache horridly, but worse, my whole body just hurts. I am moving in super slow speed. I managed to get to work and sit here. I took a Vicoprofen, waiting for that to take into effect, my knees are just aching as I sit here. My boss asks why i'm not all happy and bushy tailed? I explain that I am in pain. He asks why? I say I woke up that way. I have worked here for over a year and ever since I have started, I have always been open about my Lupus. But for some reason, they don't get it. My firm even donated for the Lupus Walk last September and have always been manageable with my time and doctor appointments. Everyone just sees my physical appearance and nothing else. I see these people five days a week, at least 10 hours a day. I take medication every day and until just recently have been able to stop my Cytoxan treatments. Do I have to look like I'm dying to feel like I'm dying? Argh...

amazed

2008-03-05T21:58:00.003-07:00

I finally got home after my long day. I went to my daughter's school and met with every single teacher, with the exception of one. I run to the grocery store to pick up my refill of Cymbalta and Restoril & I seriously hate my HSA plan. My work made it seem like they were going to pay my $2,000 deductible. Well they are, in time. Apparently, it is a coy way of keeping an employee. They fund it each month so that if you quit they didn't pay your full deductible. Yes, it SUCKS. I had to call my husband to bring my HSA checkbook and write another check for the balance. Let's say it was over $200. I decided to do a little grocery shopping while I was waiting. Well I ended up doing quite a bit of shopping. Now, I barely can keep my eyes open and realize that I need gas. I just do it. I get gas, yes while the car is running, as I am freezing. My daughter and I are in the car, trying to get warm and finally it's finished, yay!! My Raynaud's sets in and my hands are aching. I get home, grab the mail and head upstairs. First thing, take out contacts, take off clothes and jump into a hot bath. OOOoh, just what I needed for my sore feet and body. I re-registered my daughter for high school on the recommendations from the parent/teacher conferences. Now...I'm just hooked to being online. I check my e-mail and decide to post a little blurb. Ha!

sleeping mix of the day...

2008-03-05T12:05:00.001-07:00

30 mg Restoril
1 mg Xanex
my favorite smell: husband

currently my daily mix

2008-03-05T11:02:00.002-07:00

My current mixture of (daily) medications:

10 mg Prednisone
120 mg Cymbalta
225 mg Lyrica
2000 mg Keppra
400 mg Plaquenil

animal lover?

2008-03-05T10:48:00.004-07:00

My daughter signed up at the local Humane Society to become a volunteer. We both attended an hour informational session last night. As I was trying to unwind after my long day, my daughter is very excited. She is so excited that she wants to foster a kitty right off the bat. My first response, no. My second response, NO. I think she is working on her daddy for some results. It is a 6 month commitment, at least 2 hours per week. Since she is underage, an adult will have to be with her -- meaning me. We have two dogs at home, whom she doesn't take care of. Her reply to that...those two dogs at home get better treatment than me! She continues on how they should be called semi-human. What a drama queen. She learns from the best, I suppose.

bits & pieces

2008-03-04T15:23:00.002-07:00

I guess since I have found this...I should try to update with my bits and pieces...that I can remember, right at this moment.
I have received word that I am an overbearing mother. I have tried my best to be there for my daughter. But others judge me, especially her teachers. I am requested to attend a parent/teacher conference tomorrow about my loving child and how well she is doing, but that she should attain "her" goal and/or "her" decisions. I have asked my daughter what she would like to focus on...her answer, "mom, you pick." I have also asked her what high school classes she would like to sign up for, "I'm not sure, why don't you pick...like you always do." She was quite content to the items that I had picked. After registering, I had sent e-mails to various teachers to make sure she is adequately prepared for this transition. That is when I receive e-mails referring to having "her" make the decisions. I call my daughter to ask what these teachers are referring to and she had neglected to tell me, in her words "it has slipped my mind?" The counselor had pulled her out of class to discuss any anxieties she may have about my expectations. I have high expectations for my child, as any mother would. I also believe that I know my child the best. Yes, I can push very hard. But if I don't...she won't try. I am always intertwined in my child's school work, online discussions, relationship with others, etc. I probably have more reign and information than other parents. I always keep her visits supervised whether or not it is with the same or opposite sex. If she feels compelled or otherwise uncomfortable that she should call me under any circumstance. My daughter and I have a unique relationship. We can be close, but I am still her mother and have all authority. Most people think we are sisters, which I hate. Yes, people say I should be so ecstatic, but I am NOT. I am not amused. But I guess it is with life and the challenges that comes with that I learn my every day decisions. Right?

Since then...

2008-03-04T15:01:00.002-07:00

My never-ending saga continues...and I have finally heard from my nephrologist that I do not have to do the Cytoxan treatments. Yay! Finally, good news, right? As of my last post, I am finally on so many anti-seizure or just plain out seizure meds that my memory has left me. The only reason I even remembered this site was...while I was going through the pages of my daily book, I saw scribblings on the side with regard to this site. Not only did it take me a LONG time to even realize what my user name and password was, but inevitably, my life is full of days that are missing. My family has told me about my changes. My disregard for everyone else's feelings, except mine. Yes, selfish me. I hope that I can vent online for a better person, in person. If that made any sense.

It has been a while...

2007-07-30T08:27:00.000-06:00

Yes, it has been a while since I last posted on this...I'm not exactly sure which was is up and which way is down. My husband - of whom I have been married to for 13 years and together for much longer . . . has been the so-called "rock" of my life. He is the only constant person that has been with me the longest. As I spent most of my childhood being transferred to one home, yet to another, to another, then finally back to my mother. My husband and I married when I was very young. He is young himself. Together, we have raised a beautiful girl. I recently sent her on vacation to the west coast for ten days. She was in desperate need of a break. She has been taking care of me for almost four years straight. She would travel with me, go with me to doctors, testing, mris, etc. As for my husband, he works and brings home the money. I know he has a stressful job and it is hard manual labor. But we all have stress, dealing with everyday things, like paying bills, buying food, gas, etc. That has always been our downfall. Then, of course - I'm sick. I don't look sick, but I have so many pills that I have take everyday, sometimes I get confused myself. My husband generally puts out my pills in the morning and my daughter would take care of everything until I go to bed. Well now that she is gone...we had some issues, proved to be too much for my husband. We argued, struggled, yelled & screamed, I cried, he threatened his life, I struggle with him to get the gun [I'm not exactly sure why he has gun] but in the end, he didn't kill himself, I was hurt only a little bit, more hysterical than anything. I keep asking myself, why me? Have I gone insane? Here I am fighting for my life, dealing with being a mother, wife, working full time. Haven't I suffered enough?? Apparently not, maybe there is much more in store for me. I don't know life without my husband. I have known him, or have been married to him longer than I have even been alive. We have sought therapy in the past. I was never hurt in the past. He would usually break things, etc. But I couldn't let him shoot himself, in front of me, while my daughter is away. What would I tell her? How would I deal? I don't think I could. He got one shot out and it was either into the bed or the wall. I dunno? Today is our 13 year wedding anniversary. I know he will send me beautiful red roses as always. He cooked me dinner last night. He can be very sweet and loving, but I can imagine living a life with me can't be all that easy. Sometimes I wonder if I am bi-polar, or whatever? I have been asked numerous times if I needed to be admitted. Life...well let's say I had my fair share already & I am only 30 years old.

This was from the struggle, the first picture was taken on 7/26 and the second today, 7/30. I guess it isn't as bad as it looks. I'm okay. I'm also under heavy sedation as of 7/27. This past weekend I spent sleeping a lot. I don't think I even left the house once all weekend long.

After my cytoxan infusion on 7/13, on 7/20 I was diagnosed wtih strep - and put on antibiotics for 10 days. Then on 7/27 I had to see the doctor again and upped my doses of Keppra, Cymbalta, Xanex. I guess "hysteria" should be my name!

In preparation...

2007-07-12T13:10:00.000-06:00

Tomorrow is my last cytoxan treatment, hopefully for a long time. I can't even remember life prior, isn't that sad? I have made the decision and have persisted to do or say, no to testing, no to new treatment & no more of anything else. I have had it. Round-and-round, with nothing to show for it. I think I have sacrificed enough of myself to know that maybe this is where it ends. Well that kind of sounds morbid, but it wasn't meant to. I think that I have been through quite a bit. (Although, signs of a drama queen, come to mind, but who classifies enough?) Do we have to suffer many tragedies before we can actually accomodate the heading "i've endured"? Goodness, I hope not. I made my reservation for a pick up from my home to work tomorrow morning. My husband is to pick me up from work to go to the hospital. I checked with the hospital to make sure they had all orders and my room ready. I guess I have been doing this long enough to know I don't want to spend any unnecessary time at the hospital. The nurse remembered me as the "ice cap" lady. Yes, very lovely, right? Well my doctor is kind of "old-school" wherein he writes a script for my cytoxan treatment and tells them what kind of anti-nausea and how to administer the treatment, but he always asks for an ice cap and I always say "no". I have only done the ice cap once, under another nephrologist, let me tell you...it was quite the painful event. I thought having the infusion was bad enough...but to have a huge bag of ice on your head, something of preservation of hair, so your hair won't fall out. Well I've been doing cytoxan since 2004 and it is now 2007, my hair does fall out, but I still have a head of hair. It is just thinner. I have been having an emotional, so-called "melt" lately or at least I think? I am emotionally turned on small items that usually don't get a rise out of me, but lately, I have uncontrolled emotions. From simple decisions to heart-breaking ones, have been on my gut. Yea, it is that bad. I can't tell the difference of the comings and goings of anything. I feel like I keep forgetting something, but I am not sure. Like it is gonna come as a surprise. To me, everything seems to be a little bit of a surprise because I don't maintain the memory long enough to remember. I just move with the motions, my mind could be elsewhere. What does that tell you? The quality of "my" life has deteriorated to the point where I am not willing to risk anymore on. As if I didn't deal with side-effects already, then on top the emotional, the medications, etc. It just builds on you and there is only so much left in you.

reality...

2007-07-10T20:41:00.000-06:00

I haven't been doing much, just the random, same things over and over again. I'm trying not to get fired, but my hopes of staying employed may be short-lived. I can't help it, but I seem to have a problem with authority. I need the job for monetary reasons, but I can't seem to make my mind understand. I say it, but following through is another story.

Plus, my mind seems so random. Certain things I remember and others...just vanish at the blink of an eye. I used to have such a great memory, but nowadays...you are lucky if I remember the morning after.

My husband is trying to get our doggies to exercise. Lately, because I have been unable to leave the house on certain days, they seem to be putting on some weight. Getting hefty. We all love how they are so cute and pudgy. Well - of course, we want them to live much longer, so he had to take them for walks, separately. I used to be able to go on walks with them, but I have no stamina, plus I have a huge dog and when he pulls, umm...it's like he's walking me! My rheumatologist has already told me that I am not supposed to be walking the dogs, plus I can't get too far anyways.

blood

2007-06-30T23:32:00.000-06:00

Who knew you could lose enough blood from a bloody nose to need a transfusion?? Apparently, that happens. I haven't been feeling too well, losing lots of blood lately to the point...well I can't move, I'm tired and just not happy. I have been in a lot of pain. More than usual. Well I guess there is no real way of explaining. But I have come to think of myself as a complainer. As I complain about my life, my pain, my short comings. What else is left?

Life is complicated by so many details. Why do I care about details? I have no idea...because most people don't. Why can't life just be simple...loving and well I don't know...

I have been unbearable lately. To my husband, my daughter, to my family. I just need a break. Money is always an issue, but I am not even thinking of that right now. I just want peace.

Pissy Day...

2007-06-26T20:55:00.000-06:00

I guess I must've pissed everyone that I love off. I wanted my daughter to go out this evening and she fought it. I came within grips of information that she had felt guilty for having fun while I was in pain. I want her to have a normal life...but what is considered normal?? Well when a teenage girl wants to spend more time with her mom than she does with her friends...I find that concerning. Yes, it is loving...but she is yet to leave the house since the weekend. I don't want her to end up isolated...like me allergic to everything. Not allowed to do anything. I give her total freedom, and she refuses it. I have to say it makes me angry. But I guess that's what happens when they can speak their mind. I have her doing house chores that I generally reserve for the maids. But I am tired of her watching...passing garbage when she could help and pick it up. No, it could molded over and it would still be there. I love her. I want her to be loved. I know that I am not the greatest especially when I am in pain. I think part of me knows that she knows that one day she may lose me. But that could be fifty years from now. I can be here forever...as they say. Or until each organ fails, one by one. My husband is even upset with me...he even suggested that I stop taking my medications. Well if it so pleases him...I shall do so. I am tired of taking the meds...I know they keep me alive and it will be a painful process, but I think I am willing to take such a step. I don't think they take me seriously anymore anyways. Who knows who is hurting more?? All we do is have disagreements. Why does life have to be so complicated?

reminder...

2007-06-25T17:52:00.000-06:00

A small reminder of my Lupus today. I couldn't move. Yes, I said it...it was very disturbing. I wanted to cry, but didn't have the energy. Why am I so fatigued. Why is it some days I feel fine and others I just want to die? My husband had to call in to stay with me today because he just couldn't leave me like this. He wants me to find answers, but I can't...I ask my doctors...they don't know...they call me a "complicated" patient...does that mean I am a hypochondriac? Maybe? I couldn't even go into work...I wanted to so badly. My husband said that he tried and tried. Then he had to help me go to the bathroom. I just was so fatigued. I will never understand why my body does this to me. I don't think I could ever figure it out...either. I just want to be normal...whatever that might be...but it isn't this. I only got out of bed at 4:30 p.m. today. I slept for two days and half. Yes, that's correct. Maybe I'm over-exhausted. A couple of years ago...I was told to slow down or else! I thought I had...apparently not enough.

Today...

2007-06-24T21:01:00.000-06:00

I didn't do much today. I slept majority of the day and kind of forgot what day it was...I was so tired, that I didn't really make it out of my bedroom.

My daughter had a birthday party to go to in the afternoon. Then it was her one month anniversary - with her first boyfriend, so he came over with his dog.

My husband did lawn work and rode his motorcycle when my daughter was home. Other than that, it was a really hot day and we were pushing the digits on record.

cupcakes!!

2007-06-23T10:49:00.000-06:00

I want my daughter to make cupcakes for her BF. She says I'm pushy, I know I am pushy, but it is so cute. I'm such the romantic type. I guess since I've already passed the "romance" stage in my life...maybe I'm trying to re-live it through my daughter. Actually, if my husband wasn't in a foul mood, then maybe we would have more romance. But other than that...He took us out for breakfast today & it was ok, except I got sick right when I got home. I guess I knew it was coming because I didn't really want anything to eat. I just got fruit. I do, however, want to cut up this watermelon that I bought yesterday. It is already HOT today. I can't imagine it getting hoter. I think that I would be miserable!!

unbelievable!!!

2007-06-21T21:50:00.000-06:00

I think I have mentioned this a couple of times [or not] but my daughter and her boyfriend have attempted to see each other, now it has been two weeks. But next week, they have two activities planned on Tuesday and Thursday. I have a meeting on Thursday, so I won't get to join them. I plan on being out kind of late...talking...with the facilitator's of ALR. How come it has to be so darn difficult? They are kids, in public, nonetheless, majority in the precense of parents. I know we want to protect our children, but when will they ever learn love? Sometimes I think that our emotions, surroundings, encourage us to grow even faster. "emotions" It can control little and BIG things. I just want my daughter to be happy. I love her just the way she is (sometimes).

a SAD moment

2007-06-21T13:26:00.000-06:00

Last night, my family and I just hanging out in the master bedroom. My husband just got dog food and new toys for the boys. Thai left his baby somewhere in the house --Max's baby was in our room. He [Max] looked sad. He didn't play with his toy, nor the ball that was right there, but just walked right past it and laid on the ground. Thai on the other hand, was playing with Max's toy, amusing himself. I just realized that Max was getting old. He was even acting old. I had him get on the bed with me and my husband, but he wouldn't chipper up. He laid down next to my husband, looking very sad.

I'm scared of my reaction if anything happens to Max. I want to take him to the vet, but I am also scared of getting news, if any. He is almost 7 years old, but he is a large dog.

Father's Day...

2007-06-18T21:40:00.000-06:00

Father's Day is over rated right? Everyone has a mother, but not everyone has a father. Or at least for me. I had a father, I talked to him and see he randomly when I was young. I haven't seen my father in over 13 years. Am I angry? Maybe? I don't even know what to say...not having a father presence in my life...did it really make a difference? Yes, it did...I'm paranoid, afraid of being abadoned...etc. My outlook on men ~ isn't all that either...the feeling that they are "useless" seriously comes to mind.

Yeah...the A/C is FIXED!!

2007-06-16T19:00:00.000-06:00

I finally went to bed...got up early and called at 8 a.m., then by 10 a.m. the repairman was at my house & by noon he was done and it was fixed. Oh yes, for a price though. It did cut into my father's day budget. Oh well, I am sure my husband can't be too disappointed. I tried, right? I got him another flat screen tv. Since he broke the other one...and we just can't see on the really small t.v. that we are currently using and the wall just looks BAD. Also, I don't want to encourage his BAD behavior. Oh well, my daughter and I put it in the basement. Hopefully, father's day this year won't be sooo bad.

I went to my friend's baby's baptismal. Well technically I missed the baptism because of the repairman, so I made it to the potluck. Oooh, I love babies, but only for so long, hee:) They are so cute and cuddly, then they grow up.

I am SUPER tired today, but I am trying not to sleep too early. I have been all weird all week long. Trying to take all of my meds, which reminds me that I almost forgot to take all of my medication today. It was so dumb, I had to turn around and go back home to have my daughter get them.

I think maybe I am spending too much time with my daughter and her boyfriend. I am like their third wheel. I kind of intervene in their conversations, etc. I need to find a life?? Technically, I do have a busy life, I just multitask, ontop of each and other thing that I am doing. Why can't I relax? I'm probably going to hurt myself before I ever slow down.

air conditioning issues...

2007-06-16T00:27:00.000-06:00

Yes, my a/c all of a sudden stopped working today. It is supposed to be very HOT this weekend. I don't know if I can survive without air conditioning with my condition. I'm so tired, but I'm hot, irritable and it is the middle of summer. It is about midnight and tomorrow is Saturday, so I am not sure who will be able to come out the same day!! I don't think that I could stay home all day if the house is like an oven.

WHY? I can't stand it....I will melt, literally. I am pre-menapausal...so it doesn't help either. I am wondering if I should go to the baby shower tomorrow in Aurora b/c I can only go to the mall and where else? I need shelter until the air conditioning is working.

PRAY, please!!! I think I am pretty desperate!