Sick of Sick

It's been a long week. Just FYI I am going to be all Blaaaaah, so please know that I have to go somewhere and let it all out. I try to be so strong for my kids. But, when the pain just wont stop and I feel so weak that I have to just lay on the floor it sucks. It doesn't just suck, it embarrasses me. Yesterday I couldn't go up the stairs, so I laid on the floor. I was just so weak, it was like someone had pulled the cord from the wall. Skylar asked what I needed him to do. I told him the floor made my back feel better. I could tell he knew better, but he just let me be. Days like today I move like I'm 80 with osteoporosis. I'm 33 and my mind tells me I'm 28.
I've been reading my second issue of Lupus Now Magazine the past few days. I love this magazine, I wish that I would have known it existed a long time ago. This issue talks a lot about having a full and rewarding life. Full and rewarding, those words today bring tears to my eyes. Because today all that I had to do for my family almost killed me. It sucks that I try so hard to be normal and do the things that are in my head that I want to do. but, my body stops me from living the way I want to live. I get so frustrated with myself for not having control.
Please just bare with me here because today I went to Sams and I made it in the store, but when we were walking back to the car I almost lost it. The pain wrapped it's tight, sharp hands around my knees and ankles. My elbows and hands were on fire and my head was full of black, hot sand. I was praying that I could just make it, God just get me to the car and then we'll go from there. My legs practically gave out from underneath me as I approached the van and leaned on it to catch my breath. And people I can't even get a handicap pass.
I know this is all in bits and pieces, because it is all just stuffed inside my little head. And even though I'm trying to vent I feel myself pushing the cork back in as I'm typing. Because no one could truly handle what I'm feeling right now. I can't, so the fire is just going to burn inside along with the pain and humility that I feel.
I'm going to try and finish dinner now. It's that bad today, I honestly do not know if I will be able to finish cooking alone. Thankfully Skylar and Mahala are so helpful to me. They are a blessing to me in so many ways. Tonight was casserole night, so they just need to make a salad and set the table. Thank goodness for casseroles and crock pots. Hugs to All


Emotions & Hormones

We are all crafted out and full of.....burgers. :-) Mahala ans the girls had a great time today, now they are trying to settle in for the night. Well, at least after they figure out how to clean up the broken glow sticks. Yes, the downstairs bathroom looks like a night club when the lights are out. We needed to fix it up a little any way.
Watching them together reminded me of my younger, Innocent years. I remember emotions would go up and down. One second we were friends talking about everything from pink toenails to science projects. Then the next we were threatening one another with ending the sleep over early. Emotions and hormones what a hurricane of craziness.
Parents would pop their heads in to check on us. On the surface it looked like we were just hanging out listening to tapes and flipping though Bop magazines. But, what was really going on was so much more. Hearing certain songs would bring us painfully through break ups. Hearing that he wasn't really that hot and that you are better off with out him would cause our emotions to flip flop and we would be off on a high.
When we were depressed we leaned on each other and would be able to fix problems that then seemed astronomical. Nothing else mattered just your circle of people. For me it was even more so, without having family. I had no ties to anyone or any place.


This & That

Right now I'm sitting here having breakfast between two squabbling siblings. I want to pop both of their heads off and enjoy the silence. But, instead I'm going to let them work it out on there own.
This morning has been a slow process. I'm swollen like a puffer fish and as weak as dollar store coffee. Late night with Kaden. And yesterday I started cleaning some old books in our garage which turned into Skylar and I cleaning out the garage. After the garage we decided to clean the van out. Thanh came home and was shocked! What got into the both of you. I told him that I had a burst of energy. And when the energy graces my body I take advantage of it.
With every roller coaster you go uuuuuuup and then dooooooooooown. So, to prepare for the down I took a few extra pills, had a healthy dinner with lots of water and went to bed early. I woke up feeling better then most days after heavy activity. So, that just confirms to me that I'm learning how to read my ever changing body signals. Go Me!
Today we need to finish up our school work and then get ready for the weekend. Mahala is having two friends over tomorrow. Of course I have a whole day of activities planned. We are going to have a cooking lesson, 2 craft activities and a scavenger hunt. Then one of her friends will be sleeping over and we are going to do facials and pedicures. Fun, fun, fun!!!!!!
Well, the heat between thing 1 and thing 2 has went from boiling to simmer. So, I think it's safe to mingle with the locals now. Write more soon.


1,414 people touched

I have to say a Million Thank yous to everyone that helped me get the word out for Lupus Awareness Day!!! Every comment and every email that I received was like a gentle hug of " we are with you on this battle field". And it's not just for me, it's for everyone that has Lupus or knows and loves some one with it.
My blog had 1,414 people log on. Thanks to you they were educated and passed the love on. YEAH!!!!!
Today was a long day, so I'm going to make this short. I will post something tomorrow late morning. I was just shocked to see the numbers and had to say something. To everyone that emailed me questions or wrote them in the comments I will get back with answers soon.


Help Me find a Cure for My Disease...Please.

Most of you all know that I suffer from Lupus. I hate to say suffer, but I do. My whole family suffers.
Basically Lupus is when your immune system attacks your organs and body instead of all the bad viruses, bacterias and such that a healthy person's immune system would.
I'm in constant pain and most days I find myself thankful for just getting a bath ans my family fed on any givin' day. My joints swell sometimes to the point that I can't put on jeans or write because I can't hold a pencil. I have sores in my mouth from the methotrexate I have to take ( it's a form of Chemo). This is what suppresses my immune system, which also means I catch everyday illnesses easily. Mahala can get a cold and I will catch it. But it will turn into pneumonia and I may also develop a UTI or other sicknesses.
I have several autoimmune diseases as a result of my lupus. Rheumatoid arthritis is one of them. I take around 40 pills a day and some days I am so nauseous and tired that I home school from the couch or bed. I am very thankful for my good days, every morning when I open my eyes I slowly draw in my first conscious breath. I pray that I can move and get through the day. I pray to be able to have a "normal" day with my children. And when I can't and Thanh has to help me to the bathroom or when I just can't make it at all, I pray for another chance. Another chance for my body to get it right the next time.
Did you know that it has been over 50 years since there has been any advancements in the medical world regarding Lupus? No new treatments or drugs. That makes me cry and makes me fearful. It makes me feel hollow inside, like I'm lost and never to be found. I want to scream!!!!!! We are dying here people, help us pleeeeeeeease!!! Our children are going to be Motherless and Fatherless!! We are in pain and full of fear just praying for relief and comfort.

Today, March 3, 2009 is the Lupus Foundation of America’s 11th Annual Advocacy Day on Capitol Hill. Even if you cannot physically join us on Tuesday, there are still several things you – and your family and friends – can do to help raise awareness about the seriousness of lupus. Before I developed Lupus I had never heard of it before. Have you ever heard of it?

Fifty years is too long to wait for safer, more tolerable and effective FDA-approved lupus treatments. Help the estimated 1.5 million Americans living with lupus by being a part of the "Call-In to Congress" component of the Lupus Foundation of America’s 11th Annual Advocacy Day on March 3, 2009.Simply go online to the LFA's advocacy action center located at http://www.capwiz.com/lfa, and click on the link called "Call your Members of Congress Tuesday, March 3rd!" Then, you’ll enter your zip code and get the phone numbers for your elected officials.The other thing you will notice after you’ve entered your zip code, is that you will also see a guide of Talking Points for when you speak with Congressional Staff. Use these talking points to tell them how having lupus or knowing someone with lupus has affected your life.The link to the LFA’s advocacy action center again is http://www.capwiz.com/lfa.Together, we can change the future of those affected by lupus.
PLEASE, I know that we all say what can ONE person do. But, I am here to tell YOU that one person can do A Lot. What if you are the one that made the difference. It was the straw that broke the camel's back so to say, but in this situation it would be a positive thing.
Please stand up for me and everyone in this world who has Lupus on March 3rd. Please pass this info on to EVERYONE that you know that breaths air. Plaster Manic Mom all over the place and let's make a difference in the lives of Many!!!

You can also Send an e-card to your friends & family. Raise awareness about lupus and the need for new treatments by sending your friends and family an e-card. Go here to send an e-card.
Donate. With your donation we can continue to fund cutting-edge lupus research. Go here to make a donation.

There is one very simple thing you can do in Facebook. Below is suggested text that you can use for your status on your Facebook account for Tuesday, March 3, 2009. Encourage your family and friends to change their statuses as well.
"YOUR NAME is encouraging friends and family to support the LFA’s Advocacy Day. Tell Congress 50 years without a new FDA-approved lupus drug is too long http://www.capwiz.com/lfa"
If you have a Twitter account and are joining us for Advocacy Day, you can "tweet" your Advocacy Day experience. You might want to post updates such as "Heading to Capitol Hill now" or "Meeting with Senator Young."If you’re not able to be on Capitol Hill, you can still use your Twitter account to encourage people to call their Senators and Representatives, and raise awareness about the need for new, safe, tolerable, and effective treatments. Below are some suggested "tweets."

"Support LFA’s Advocacy Day. Tell Congress 50 years without a new FDA-approved lupus drug is too long. http://www.capwiz.com/lfa""Join me and call Congress and tell them 50 years without a new FDA-approved lupus drug is too long. http://www.capwiz.com/lfa"

Leave a comment or email me if you posted this info on your blog, told family and friends, donnated, contacted Congress or even prayed. Anything is better then nothing. Love to All!!!!


Red Mustache & Painted Toenails

I'm bored, so I thought I would take a trip down memory lane. Keep arms and feet inside the vehicle at all times. And no chewing gum!

Skylar is feeling so much better now. His throat is healing well. And he is eating just about everything that he wants to eat. While he was all broken up I thought it would be fun to tell him some " when I was....."stories.
So, when I had my tonsils and adenoids out besides the hell fire in my throat I remember the tomato soup incident.
Picture this with me- Poor young girl struggling to breath and swallow. Needing nourishment and love to survive yet another day. I was hanging on by a thread and the thread was worn thin.
Can you picture that? Can you? Okay, some of that was true I swear. But, there was a ton of super Mario playing and endless ice cream bowls filled to the brim. Oh, and let's not forget about Kraft's Mac N cheese. My gut was so full of fake pasta and powdered cheese there was no way I was going to die from starvation.
So, anyway the lady I was staying with at the time had made me a little lunchy pooh one day. *Flash Back*I had my operation when I was 14, so my parents had already died and I was living with my 2nd family at that time.
Back to the little lunchy pooh. She had made me soup. Hot, thick, nasty tomato soup. I smiled and retrieved the Big bowl from her. And tried to look impressed and gracious. My brain went into over drive. What can I do to get rid of this mess. What are my options. I thought about the bathroom first. But, I was weak and maybe she would notice me walking down the hall. Or the pipes could clog up with it's nastiness! I thought about lifting the carpet and putting it under the pad. I know.....crazy, I was 14 on pain pills cut me some slack. And then I saw her scrawny miniature poodle sway into the room with it's little painted toenails. I never really liked that dog. JACKPOT!!!! Come here little darling!!!!!
She of coursed hopped on the bed and started sniffing the red mess. Her little tongue licked at it slow at first and then she was excited. I guess it must be better then puppy kibble. I noticed a little gagging going on and I took the bowl from her. And as if God was trying to punish me I noticed the dog had a RED mustache. WHY......LORD WHY!!!!!!
I tried to wipe it's little mouth clean and gave up because I was woosie. At this point I was tired and I looked on the floor where this particular house had it vents. I always thought it was weird to have vents in the floor instead of in the ceiling. But, that day I was happy. I went over and poured it down the vent. TA Da I thought, all gone. I was bad, what can I say. Thank goodness we grow up. Now I have to pray my kids aren't as bad as I was.