Happy St. Patrick's Day

It is a lovely day today, highs are in the 70's!! I hope everyone is enjoying their day. It has been an ordinary day around here. The boys are finished with school work and lunch and are now on to chores then play time. I have some sort of stomach bug that has finally worked it's way around the house to me. I'm really bummed because I was supposed to go see Jason today. I don't want to risk giving him a virus, so at home I stay. He's improving everyday and they may even take him out of ICU soon to another unit, I think it's called PCU? I'm not sure. I'll ask my Mom again the next time she calls.

I've been putting off taking my weekly shot of methotrexate. I know, I know, I need to take it. I just hate the being sick for a full day or more after I take it. I guess I'm going to take it tonight and just get it over with. Recently the FDA has approved a new drug for the treatment of Lupus called Benlysta. It is an IV medication that is taken once a month. It is so expensive right now, I'm sure my insurance won't pay for it but maybe soon.

Prayers are Answered

I got a really great phone call this morning from my Mother. Jason had a good night and he is responding and communicating!! I have prayed so hard and I have never lost hope. Many of my childhood memories include Jason. I love him like he was my brother. I want to be there with him so bad, but unfortunately I can't. I have my Mom tell him everyday that I love him and that I'm thinking about him. I know the road to recovery is going to be a long and hard one, but I will continue to keep my faith that he can do this.

This is not a very long post, I just had to share the good news! Hug those you love.

Good Night World

Now we come to the end of another day. It has been another emotional roller coaster for me today. My cousin went in for his first surgery and he's been in my thoughts constantly. I won't go into details, but something very traumatic happened and he's in ICU and he's in pretty bad shape. Every few minutes or so, his smiling face pops into my head. Sometimes his laughter finds it's way in their too. I'm constantly saying little prayers for his recovery. I want to see him smile and hear him laugh again so badly. I don't want those things to be just memories.

Today the Lupus symptoms have not been all that bad. Of course, there was pain. There is always pain. I don't think I'll ever know a day again with no pain at all. The fatigue was mild today. The main thing I've noticed is that I've been moody and agitated easily. This is probably due to several different factors. I am looking forward to a good night's rest (I hope).

Well, this is all for tonight. Hug those you love!

Another Day in the Life of a Lupie

Again today I am nothing short of exhausted. I did, however, make it out of bed today. I even managed to put some makeup on. I feel as though I am walking through a vat of molasses. Even still, I have to manage to do something for dinner. It'll be a late dinner. The boys are outside enjoying the day and I'm going to let them play for as long as possible. So for a little while I get to have some quiet time. Lately these little spurts of quiet time are spent praying or sleeping. The boys have been very compassionate and helpful this past week. I am lucky to have such great kids.

I've been getting a bit of hate mail lately because of a comment that I left on someone's video on youtube. The video was proclaiming that this person had cured himself of SLE by following a strict diet. I commented that there is no cure for SLE and posting videos such as this detracts away from the cause of finding a true cure. After reading quite a bit of verbal abuse aimed at me, I just quit reading and blocked those people. But I stand by what I said. There is NO cure for Systemic Lupus Erythematosus. If whatever diet, or juice, or snake oil, these people took that "cured" them really worked, then they didn't have Lupus to begin with. There is so much misinformation out there and these people are making it worse. Why would we be taken seriously if people believed all we had to do to be cured was follow a diet, or drink a certain juice? If only it were that easy. Now, people have found symptom relief by following certain diets and taking certain supplements. I am not discounting these people. I believe that symptoms sometimes can be managed that way for some. But not for all. And it's definitely not a cure.

As part of the new direction I am taking my blog in, I am going to list the symptoms I have felt today at the end of each post.

Symptoms today have included:
Fatigue, exhaustion
joint pain, both large and small
forgetfulness
depression
anxiety
sensitivity to light

It's been quite a while!

Yes, it's been quite a while since I've devoted any time at all to this blog. A lot has been happening in my personal life, I won't write about anything or anyone not directly having anything to do with me without their express permission, so even though I've had some pretty rough emotional things happen I can't write about them. Sorry to be so vague, but that's all I have to say about that.

Now, after a little chat I had with my half sister on facebook I have decided to use my powers for good and get back on track with this whole blog thing. I wanted this blog to be an outlet for my feelings and for my experience with my diseases and how I cope with it all. I'm really going to try hard to get back on task. I find that I am a much happier person when I write things down. Even if no one ever reads the things I write, there is still some kind of release that happens when taking the thoughts and worries out of my head and putting them on paper or a computer screen.

I have been extremely tired lately. I think I am emotionally exhausted more than anything. I have a very large, compassionate heart and when someone I love it hurting, I feel it in my heart, but I also feel it physically. Not that I have the same pain that they are having, but I think strong emotions cause my lupus to become more active. Staying stress free is obviously impossible, but I am getting much better at positive thinking. This has helped me tremendously. I also pray much more often than I ever have. Any quiet time I have I pray. I talk to my God in my own quiet way. I know he hears me and I know he has answered me. I've been pressured lately into going back to the church that the boys and are are members of. I don't have anything against this, I like to attend church when I am feeling well enough for it. And I especially like it when the boys get to go because they get to meet and socialize with some really great people while the worship Heavenly Father and Jesus. But for me, I believe that my personal relationship with Our Father is what's really important. I may not be as "religious" as some in my family would like me to be, but I do have faith and I do have a bond that I strengthen on a regular basis by praying and by doing what I think is right and living the best I can.

So, this will be all for now! But...I will be back. I'm going to try to write something at least once per day. Plus I have an idea that I'm kicking around about a new "series" I could add to this blog. Have a blessed day and hug those you love!

More Snow!! and...Some Makeup Stuff :)

Lots of snow on the way!! The last snow we had was a really dry snow and the boys and Matt didn't get a chance to build their snow fort or make use of the snowball maker (thanks Devon!) or the catapult (sic). We have plenty of bread and milk so let it snow.

I was lucky enough to receive some money this Christmas to spend on myself so I decided to splurge on some makeup items that I've been wanting for some time. The purchase I love the most is the Urban Decay Naked palette. It was way more cash than what I'd usually spend on makeup, but I figured it's Christmas money, so it's okay. It comes with a travel size primer potion and a dual ended eyeliner, one side in whiskey (brown) and the other side in zero (black). The colors are really similar to some other palettes I have. I have the nude on nude and the champagne and caviar palettes by NYX, both of which are very comparable to the Naked palette. The biggest difference is that the Urban Decay shadows are more "buttery", if that makes any sense...LOL.

CVS had their usual end of season sales and I got some AMAZING stuff for next to nothing!! The entire line of HiP stuff by L'oreal (excluding a few things) was on clearance for 75% off. Revlon had some great stuff too. They have the best lip products ever. I like their lippies even better than department store brands. Normally I'm not a big lipstick person, but when they go on clearance I'll try out some new shades. And...lastly I got Maybelline's Great Lash mascara in the regular and waterproof version and one with the curved brush. I know, I know...I always try that mascara and end up hating it but I always feel compelled to give it another shot. The non waterproof version smudges terribly on me and it doesn't do much in the way of adding volume or length. It just darkens the lashes. That's it. The waterproof version doesn't smudge as bad (but it still smudges). I guess this mascara is better than using nothing at all, and I'll try to use it up so I don't waste it, but I won't be purchasing this mascara again.

Well, I have to get my day started so I'm outta here for now!! :)

Back To Normal

Well, now that the holidays are officially over things are slowly starting to get back to normal. I haven't blogged much, or even been on the laptop that much because I've been trying to spend more time with the kids. I have to say, I really hated sending Justin back off to school. I wish I could home school him as well, but I don't think it would work out very well with him. They are all growing up so quickly now. They are turning into young men right before my eyes. I just want to hold on for a bit longer...I'm not ready to let them go just yet. Justin still has the "baby" like look about him. He still has his child voice, unlike the other 2. That will all be gone far too soon. I guess this is just life and I have to enjoy these times while they are here.

I have been really depressed and angry lately, I think maybe due to a new med I've been put on. The thing is, the med helps so much that I don't want to stop taking it. So, I've been trying to deal with these emotions the best I can. Of course, some of the depression is undoubtedly from the fact that I feel robbed out of a normal life thanks to Lupus.

I guess this is all for now. I'm going to try and get back to a regular schedule of writing again. It makes me feel better.

Have a blessed day everyone.