All in a Days Time

     So tonight I feel like I could ramble....my husband used to listen to a popular radio show that did a clip on "5 Minutes in the Mind of a Woman". They mocked, or poked fun at, how women's brains go from one thought to another.....Is there another way to think?? My mind races 90 miles-a-minute from one thought to another to another. Never slowing down, even at bedtime (thank you Prednisone for that). I'm not sure I'd know what to do with silence. Maybe it's being a mom that allows your brain to process  many different tasks a the same time and then trains your brain to go from one thing to the next. Efficiency. How else could we take care of everyone in our family. How else could we get everything on our "To Do List" done? I think this is what our brains have been trained to do so that everything can get accomplished in one day, in  a timely manner.


 On another note, I feel yucky right now. I have gone through a full day of teaching first grade ( not to forget getting myself and my two children up and dressed and off to school with lunches packed and homework completed all before 7:15) and then made sure that my daughter got off to gymnastics, picked up my son from the sitters and dropped off a friend's child, then I tutored a student, helped a new teacher move her stuff into her classroom, took my son to soccer practice, entertained two girls during practice, attended our school PTO meeting, and then fed, bathed, and put two children to bed!!! I'm exhausted. Even if I was healthy that would have been a busy day... but while I'm flaring up, today was a miracle that I finished. Thank you God!!!

   I have had many friends tell me that they have prayed for my "healing" and that they know God can heal me from my lupus....my internal response was "What? Why are they praying for complete healing?" I didn't even pray for healing. I don't need to be healed, nor want to be...mostly because deep in my heart I know that my lupus plays a role in my life, in God's will. He has broken me so that he can use and mold me. It almost seems "uncomfortable" to my heart when they say this because I know that God's will for me does not include healing. I just say thank you... and I've told a few of my close friends that I don't pray for healing and therefore know God won't answer this prayer and that I feel its unnecessary. Sure, it would be great to be healthy and pain free again, but I know it wouldn't be God's will for me. For me. We are all different.

   

 So to wind down and begin to turn my brain down a notch, I'm sitting in bed writing this blog, drinking a glass of Sangria, and watching the ID Channel (one of my favorites). I hope that I sleep okay tonight. I'm off of all my sleep meds after 5 years or so(other than wine), so it's a battle against my steroids some nights. And my perfume for the evening is a mix of Icy-Hot and my heating pad, that uses natural beans, and smells like a funny popcorn. Ah, the life of a lupie. You never run out of Advil, Icy-Hot, or doctor appointments. But altogether, today wasn't too bad. I got through it and I"m still here. No hospital visit. And I get to go back to work tomorrow;) Thank you God for all my blessings. For my health (be it what it may), for my children's health, for my job and the people I work with, for my husband, and my mother and sister who support me, for my hair (what I have left on my head dispite the thinning and bald patches), for the country that we live in and all the freedoms that come along with it, for modern medicine (my Benlysta especially), and for life itself. I feel so very gracious and grateful.

Revival and Just Enough Spoons Today!

So after a restful day yesterday and a nap today, I feel better! Amazing, but rest and stress are the two biggest factors in my day-to-day strength and stamina. I would not have believed that before I had Lupus....I would have said that it is all in your head... But clearly doctors say that for a reason!

So at the end the day, I feel a bit revived. Not normal… but closer than I was yesterday. God is good to me and I know that no matter how I feel each day, I have to enjoy each day as it comes, find the joy around me and focus on those moments and those little "happies". Life is short and if each day is lived in pain, it's still a life to be grateful for. At the end of today, I had just enough spoons to get through!! Yay for today!

Frustrated and human...

     I usually have a positive and uplifted spirit each day about my state of being, my health, and the obstacles I have to overcome.....but I'm human and today I'm upset. I'm upset, not because I feel bad right now (although I do feel bad), but because sometimes our loved ones do not understand or consider what we need when we don't feel well.  It is hard to understand what Lupus or any chronic illness feels like if you've never had it, and I know that I am the only member of my family with a chronic illness. I also am aware that I am more sensitive and emotional when I am tired and don't feel well, but I'm going

to say this anyways.....

     It's no secret that I'm talking about my spouse. I love my husband. He is a kind, gentle, Christian man. He is a great father and a great provider. But we all fall short (as do I in many categories so please do not think this is a bashing). Attentiveness is not his strong point. He doesn't seem to notice when I need help. Or he does notice and chooses not to help because its easier to not help. He's human. And I don't expect to be catered to. I am an independent and strong-willed person. And I will NOT ask for help. So today I'm frustrated because I'm worn out and need help with the kids so I can sleep and feel better...needless to say, I'm wake and alone with my precious, energetic children, whom I love;) My family is a state away so asking them for help isn't a possibility. I feel bad that I'm frustrated, but the truth is that today I do not like that I need help. I am also intelligent enough to understand that I am responsible for part of the outcome since I am unwilling to ask for help. All that being said....Lupus today you have put me in a stinky mood. I don't like needing help from others. I'd rather be the person helping everyone else.

And on that note...I'm done and ready to be nice again!

Keep Making Me - Sidewalk Prophets

This song reminds me that a chronic illness can prepare me for God's will.

Who Makes Your Days Worth It??

     So life isn't meant to be lived alone. God gave Eve to Adam and the disciples to Jesus (even Jesus needed a little help-lupies please remember this because I know I have a hard time asking for help but somehow knowing that even Jesus needed helpers makes me accept help a little easier...sorry to digress). He made us to need each other and to even compliment and complete each other. We have no purpose in life if we are alone. There would not be anyone to enjoy, to laugh with, to help, to lead, to love, to lean on, or to LIVE with. The people we are surrounded by are our strengths and even sometimes our weaknesses.
     I had never felt there was a purpose for my life until last year. I had prayed that God would lead me to my purpose, his will, while I was here on earth. I knew that my Lupus was a gift through which I was supposed to reach others....whether through the actual illness or through the perspectives that came along with my chronic illness. But I felt sure that this was my gateway, or my door, that I was supposed to walk through. I knew that something and someone laid on the other side that I was supposed to reach . Funny...but 6 1/2 years after my diagnosis and 2 years after beginning my Benlysta, I can look back and see a handful of different situations where I know that God used me to help someone else on their journey. How could you look at that and not feel appreciative??
I have to say that I do have people in my life that are like drains. They suck out from you what they want or need and do not send anything back your way (other than complaints), but I try not to focus on this.
     So I ask you, who could you help with your story? With your experiences? All of our stories are different, but the common thread is that we are all people. We are all people that need each other. We are all people that need to feel loved, understood, accepted, and nurtured. Put aside your troubles and pain for a minute and remember what the purpose behind it all is....you were meant to go through these experiences in order to help others. Besides wouldn't it stink if you thought that all of life's pains were pointless? For nothing? Every day is a choice. I choose to see my life as a positive, as a mission, as a gift. God has just given me different gifts then others. So in the end, God makes each day worth it for me. My family makes each day worth it to me. The people in my life make each day worth it to me. They put the us in Lupus. And I choose to be grateful and happy.

All My Efforts...

So here is what my effort and energy has gone into over the past year since I have been feeling great, thanks to my BENLYSTA infusions!!! This is my classroom at Tipton Christian Academy in Covington, TN. I teach first grade and love every minute of it. I also ADORE where I work...God surely had this planned for me. They are loving, kind, caring, and understand my illness and allow any accommodations I might need along with prayers if I have to be out! I love bright fun colors and want for the room I spend most of my time in to be happy, 8 hours+ a day, as well as wanting my kids to love where they are.

   

Today was better than yesterday. It started off slowly. I was still very tired from yesterday. I think I had a bit of a bug yesterday along with my infusion....but after 4 cups of coffee and a coke I am feeling much better. I'm going to wrap up what I can here and go home to work from bed. I'm a perfectionist and after not being able to work for 5 years, I want to do what I love and still do it well! I strive for perfection and normalcy, but I know that I still have Lupus and that I might never be able to do all the things I could do before. I'm going to have limits now, no matter how good I'm feeling. Plus, I have to remember to take it easy sometimes, especially the day after my infusion.

Infusion: Date with Ben Today

So today was my infusion date for my Benlysta. It was a rough day, which usually its not. I woke up last night throwing up and I had a sore throat...I figured I have whatever is going around our school right now. That's part of going back to school;) Whenever I'm tired and exhausted my immune system seems to be allow bugs and viruses in! So this morning, on my way to my infusion at 8 o'clock in Jackson, I felt horrible. Everything hurt. Exhaustion set in. Overall ickiness.
Once I got in the doctor's office, my blood work came back with activity in my white counts...uh oh, anyone who takes infusions knows that at his time I'm beginning to panic and think they won't give me my infusion (which I need badly)..luckily I didn't have a temperature so he allowed the infusion to begin...AHHHH!! But my sweet infusion nurse had a hard time with my veins today. They blew three times and I am bruised all over and very sore...it turns out that I had taken Benydryl last night because of allergy issues and that made it VERY HARD to get my catheter in my veins and to get my IV flowing. Arghhh...the good thing is that this has never happened before and I will make sure that I never take antihistamines before my infusions in the future. After starting my infusion, my fever started. I feel yucky and came straight home to sleep. I'm still sitting in bed now and feel like doing nothing. I'm grateful that Cliff picked the kids up and is entertaining them somewhere else right now so that I can rest.

Looking fairly sad as I lay in bed and sip on my treat for the day...a coke from Chick-Fil-A

I'm reminding myself right now not to feel sorry for myself...when I get exhausted and feel bad it is easy to become a bit emotional....but I am lucky. I am lucky to have help on the days of my infusion. I am lucky to have a husband who can take care of and love on our babies. I am lucky to have good veins and not need a port. I am lucky that needles don't bother me. I am lucky that my doctor's office is only 1 1/2 hours away now instead of 6 hours. I am lucky to not be in the hospital. I am lucky to be healthy enough to teach first grade (even if I'm worn out right now). I am lucky to be receiving my Benlysta infusions and that it helps get me back towards normal. I am lucky that God has carried me through my journey with Lupus. I am lucky that my organs still work. See, so many things to be thankful for! I'm going to end on that note because wallowing isn't my style;)