How it Affected My Child

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)

just another day...

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.

Reading...

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

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

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

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

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

loopholes

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.

I wonder...

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

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

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.

hi there :D

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.