Monday, September 1, 2014

Here's How It Turned Out


Well, this is how the cotton candy costume turned out. It wasn't exactly what we are going for, but I worked with what I could find at Walmart last minute without pushing myself over the edge. The funny thing is I saw one of his teachers there and she borrowed the idea as well...look how cute they look together!
Ellen McCray also got to go to a football game with one of her friends this past Saturday. This means I got another bit of rest having only one child to put to bed that evening. Overall she said she had a wonderful time and I got a little more rest. I'm thankful to have great friends where I live. This is part of the reason I would never move, even being so far away from home. I miss my family and there's times I definitely would like to be at home. But I have to say, God has blessed us with a great group of friends. Friends that will be here till the day I die, to help me when I need it, and for our children to have friends to grow up with. It's my friends that help me the most sometimes. Today when I'm tired, and my husband has made other plans to help other friends and family that need assistance, it's my friends that help me with the kids.  I believe that God places people in our lifes for a reason. It's very evident to me why he gave me the friends he did. Without them I don't know what I would do, especially being so far from home.
Thank you to my friend Jen who also took Ella McCray to Dove Camp today for the Opening Day of Dove Season....in the rural area we live in, hunting is a big part of life. I love all of my good friends!

Sunday, August 31, 2014

No Plans are Good Plans

So we were going to go to the lake this weekend, but luckily it rained and we had to cancel. I could not have asked for a better long weekend... I need the rest, lots of it. So far, I've done a lot of sleeping. Sleeping in, napping, and resting. The bad thing.....it's not enough rest yet. I still feel exhausted and am hurting a good bit.
Yesterday was a frustrating day. There are things I have had to let go...I can't do everything. I just don't have enough energy or time. So what have I given up? Mostly the dishes. I am very anal and like to have everything in its place before I go to bed, but I had to let go of something. Now, it might be a day or two of dishes living in the sink before I unload and reload the dishwasher. It's just my life now. My husband hates dishes, so it's not something he comes home and sees and just jumps in to help. Well, today I came home to him doing dishes. I was a bit shocked, so my first reaction was to say thank you. I was not greeted by a kind "You're welcome", or any other pleasantly. I was greeted with a "Today I hate your lupus."
Many emotions begin to rise as I heard this. Why do you hate my illness today? Is it because you know my exhaustion and you hate it for me? Is it because you see that sometimes I am a shell of the woman you met and feel in love with? Is it because you want to fix me and cannot and you get so angry and protective because you want me to be okay? I'm kind of leaning towards a disappointing answer.... he hates my illness because he had to do the dishes for me. Hmm.
How can we love each other so much and not want to help the other when they're in need? If any of you reading this have a spouse that struggles with a chronic illness, please remember that although there are times that you hate the disease that your spouse is battling and times that you wish life were "normal" again (for whatever reasons, and yes you are entitled to hate this illness too)....they are hating it worse. It's a harder battle to fight from inside the beast than it is from outside. It's not your body that hurts, fails, and exhausts. It's not your perseverance that is tested daily, or even hourly. Be kind and remember that you are a team. There are going to be times your teammate needs you. They didn't ask to be the "sick" spouse when you said those vows "for better or worse, in sickness and in health". I know I'd be happier being the healthy spouse. At the end of the day, you have each other. You take care of each other. It's hard sometimes, but selfishness is never flattering. Better yet, selfishness never makes any situation any better. Try to always see life through the eyes of the ones you love. The tough battles are easier when fought together.

Put My Wife’s Interests Above My Own --- Dear Lord, It is easy for me to act with selfish motives, to always think of my self first when it comes to my mariage. Give me the ability to live out what Paul says in Philippians 2:3-4, Do nothing from selfishness or empty concei… Read More Here http://husbandrevolution.com/put-my-wifes-interests-above-my-own/ #marriage #love
I"m also hoping for my loved ones to take this to heart too!

Thursday, August 28, 2014

Surprise

     So I must say that I am surprised to feel so tired and achy since my last infusion. I'm not sure if its because I had a bit of a bug at infusion time or if its because I'm working hard for back-to-school time in my classroom or because I didn't get to sleep and rest for 2 solid days in a row (like I did when I traveled over 400 miles to Atlanta without my precious children or husband)....but either way, I was surprised that my infusion didn't help me feel a whole lot better. Well, after saying that all out loud, I guess I'm not surprised! Maybe after this long weekend I will get rested and revamped and allow my infusion to reach it's maximum ability to improve my body! It just needs time to soak in while I'm resting and sleeping.
     On another note, my parent duties continue...I have no spoons left today. I'm exhausted and still have computer work to do tonight as a teacher, but as a parent, I truly need to go to the store to get groceries and some materials to make my 4 year old a costume for his Shape & Color Circus tomorrow at pre-school. He has not been able to decide what he wanted to be until tonight, only hours away from his event at 11 tomorrow. I was relying on the fact that I'd be able to throw something together tonight from old items we have from Halloween's past and that he could just be a clown or a muscle man. BUT NO. He has his heart set on being "cotton candy". Yes, you heard me right...thank you Pinterest (not sure why I showed him circus costumes we could make instead of showing him what I had in the closet...mistake 1 for me). So now, I'm waiting for my husband to come home from work (and he's running later tonight) so that I can go to Wal-Mart (which I hate going to---it's too big and always wears my knees out before I am ready to check out) and then come home and make a cotton candy costume for  Tip to wear tomorrow. Why am I doing this? Partly out of guilt. I stayed at home when my oldest, Ella McCray, was in PreSchool and put all of my "stay-at-home-Mom talents" and energy into hand making costumes and attending all events (with Pinterest made crafts for the entire class)....So although I know I could just tell him that Mommy is tired and we need to pick something out of our dress-up box, I feel the guilt of life circumstances (Lupus included). I hate to tell my children that I don't feel well. I don't want them realizing I'm sick...or tired. Although its impossible to always hide, I do try to shield them for the entirety that comes along with Lupus. So I opt not to use "mommy's tired" as my excuse...most of the time.
DIY cotton candy costume - no sewing required!
This is what he wants but in blue of course!
     So wish me luck tonight because I am probably digging myself a hole to lay in. What do you do? I am a type A personality and a perfectionist with a bit of OCD.... I have learned to let go of a lot because I can't do it all anymore, but I don't want to let go of everything.
   

Tuesday, August 26, 2014

Another Triumph

I consider today a triumph because I made it through the day. I'd like to say thank you to my 4 cups of French Vanilla Cappuccino and my body for holding out. Thank you for my victory today....although it wasn't without some minor tragedies. I hurt, enough that I can't walk well since exactly 4:35, and I am exhausted...'tis life, life with Lupus;) I took my bath with Epsom salt and lathered down with Icy-Hot afterwards. I have hit the sofa or the bed while my sweet husband, who got back from an out-of-town work trip today, helped take care of the kids so I could rest. Thank you God....see, there are little miracles or gifts from God everyday that help us to get though it!

Monday, August 25, 2014

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.
Good Quote #quotations, #sayings, https://facebook.com/apps/application.php?id=106186096099420

 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.


TEXT:  Sprinkles of happiness can be found in the simple things of life.  A bike ride.  A back rub.  The tranquil sound of ocean waves.  A hearty   

 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.

Sunday, August 24, 2014

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!





[INFOGRAPHIC] From Achieve Clinical Research - another great infographic on lupus, this time for Lupus Awareness Month.

Saturday, August 23, 2014

Frustrated and human...


Yep, I'm a bad-ass... Hilarious quote of the day! For more funnies and daily humor visit www.bestfunnyjokes4u.com/rofl-best-funny-quote-3/




























     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.....
Furthermore, I am giving you what you did not request...Great blessings belong to those who are humble....God can do anything, you know—far more than you could ever imagine or guess or request in your wildest dreams!~~1 Kings 3:13, Matthew 5:5 & Ephesians 3:20
     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.

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