I @#&%$#% HATE Lupus

*sighs* I am so sick of being in pain. I am so sick of my chair. Though, I am grateful I have a comfy chair to sit in, I am entirely sick of sitting in it. I am actually jealous of my kids who are so graciously doing the spring cleaning of the kitchen today. I want to be able to do it. Mainly because no one does it like me and my way is the right way, but that's beside the point. I just want to be a normal functioning 33 year old adult. If I feel this bad now, what is it going to be like when I am 60 or 70? I shudder to think. I've started taking methotrexate again so in a few weeks I should start to feel some relief (hopefully).

I remember a few entries back I had made some goals of some kind, but I've forgotten what they are. I'll have to go back and look.

I wish so much I could be with my cousin Jason at the hospital. I haven't been able to see him since he has been alert. I hope to be able to make it down there on Tuesday when he has surgery #4. He has a very long road ahead of him, he needs all the support and love he can get. I feel awful that I can't be there more for him. He is always in my thoughts and prayers though. Not an hour goes by that I don't say a little prayer for him.

Spring break is almost over and it'll back to the daily grind come Monday. Justin is bored out of his mind and I think secretly he'll be glad to get back to school. There have been some nice days and they've well enjoyed them outside, but the past few have been just miserable. I can't wait till summer. Even though I can't be out in the sun, I at least want to be able to look out the window and see it when I want.

Well, time to give my fingers a rest. Hug those you love and have a blessed evening!

It's Flare Time

Well, I knew it was coming and here it is. A flare. I can feel it oh so subtley moving it's way in my every cell. It's so odd, this feeling of knowing it's starting. It's near impossible to explain to someone who has never dealt with Lupus. I can feel it in my muscles, my joints, even in my eyeballs. Who knows how long it will last or how bad it will be. A big part of this is my fault for not taking my methotrexate like I'm supposed to. Stress has also played it's own part in it too. Soooo....now to deal with it. First of all I'm going back on my meds regularly. Second, I'm just going to take it easy and start doing some meditating everyday again. That usually helps a lot with the stress, but I usually end up falling asleep! LOL

May is Lupus awareness month so I think I'm going to devote time each day to spreading the facts about this disease. Sounds like a good idea! I'm wore out, so I'm done for now. Hug those you love!!

I've Had Better Days...

Today just wasn't all that great of a day. I've had much, much worse but I've also had better. I've been slacking taking my methotrexate and I feel like a full blown flare may be on the way. Yeah, yeah, I know. I've all ready made plans to take it. I'm going to start again on Monday. It makes me ill so I don't want to take it on the weekends and have it ruin my weekends.

There is just so much going on that I wish I could write about. Not what is going on with others around me (that's a whole other story), but what is going on in my own head. I feel so isolated sometimes. I just feel like no one understands what I feel like. Sometimes I just want to put it all out there, all the thoughts and feelings I have bottled up, but I know that would be a big mistake. Part of why I do this blog is to deal with my emotions and Lupus and all that, but I just don't feel free to do so. I feel like the truth would be very painful for some that are close to me and I don't want to hurt them, so I just continue to let them hurt me. Sounds masochistic, doesn't it? Ahh....I don't want this to turn into a pity party, so let's move on.

I didn't sleep well at all last night. That just set the tone for the day, I think. I tried to get a nap in and I managed to get a small one, but I woke up feeling worse than when I laid down. I did manage to toss a load of laundry in and I made dinner, but those were my only 2 accomplishments for today. I think maybe I should make a list of goals each morning. It could be like a little ritual I do with my coffee every morning. That may help me feel more productive and useful. I think the key to that is going to be to keep it realistic. And to be honest with myself about my limitations. I tend to think I can do a lot more than what I really can. I think this little experiment may be worth a shot. I'll report back on how it's going after a week or so. If you don't hear anything else about it, know that it didn't work or I just forgot about it. The latter being much more likely.

Well, this is all for now. I hope everyone has a restful night and don't forget to hug those you love.

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!