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.


I"m also hoping for my loved ones to take this to heart too!

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.

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.
   

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!

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;)

             

Weight Gain on Steroids

 My challenge: seeing myself in the mirror everyday and not feeling like I look like myself....
As anyone with a chronic illness knows, years of steroids and other medications can cause weight gain and after 6 years, you don't look like yourself any more. I don't mind my lupus too much (even the pain , fatigue and health problems) but the weight bothers me....maybe I'm vain. I don't think I am, but not feeling like yourself in your own body can be hard. I don't mind so much that I'm 30+ pounds heavier now than I was when I was diagnosed....but I mind that my face does not look normal to me and that my arms are suddenly much bigger since my thyroid has changed (along with my hypothyroidism or Hoshimoto's). I do mind that I now out way my husband by 45 pounds!!! And that my daughter asks why I'm so much bigger??? I'm trying to love me for me, where I am, regardless of where I've been or what I'm used to. But this is hard! I'm trying to post more pictures or me...not because I love to take selfless, but because I'm trying to not feel disgusted with what I look like due to my lupus! This is me now...

And here is the me I am used to seeing....

Cliff and me after we had gotten married...maybe 7 years ago.

New Year's Eve 7 year's ago (I'm 2nd from the left).

My dad and me at my engagement party for my sister 10 years ago.

I'm used to being thin and not having to struggle with my eating or extra weight.....and 6 1/2 years on steroids will do some damage, I don't care who you are! I know it isn't just me...but having a chronic illness and being on steroids daily can cause a moon face and a "plump and perky turkey" body...oh, the things we must deal with in life. It sounds silly. How lucky I am to have my weight gain as a horrible side effect of my illness...if that's the worst I get to deal with know then I know I'm blessed.

In All Directions

Today we were going in all different directions. Cliff took Tip to church and then to the Air Show in Halls County. Ella McCray spent the night last night with her grandmother and I went to church at the church/school where I teach for our Orientation. Busy can be good;)

Tip had a blast, Ella McCray didn't want to come home and I got to meet all my parents and work in my classroom for a bit. I love where I work. It's truly a blessing to go to work each day and to get to teach children as my ministry to The Lord.

But before the day was over, We are at my mother-in-laws house and Tip was accidently pushed into a table. Luckily his gash didn't need stitches! It never ends...I guess there will always be something that goes wrong. On a better note, I want to thank you for your prayers for Sarah. She is off her ventilator!!!! Prayer can be so very powerful.

I Put My Spoons Up

I surrender. I'm overwhelmed, exhausted, and apparently I have no memory what so ever. I'm sure all of y'all are familiar with the spoon theory, especially if you have a chronic illness, it's the comparison to life using spoons each time you use energy...so by the end of the day, you're out of spoons, even if that means you've got more things to do. I'm out of spoons right now.

This week was my first full week back to school teaching first grade. Planning itself, is a big job. I'd like to think that I'm an over achiever, but maybe not. I try my best to do as much as I can with my kids and to maximize my planning to do everything I think I could do is a good teacher. The truth is, that we've also had one of Ella McCray's friends with us this week. She's been spending the week with us while her mom is in ICU. Her mom has cystic fibrosis and is 24. I'm glad that Hope has been able to stay with us this weekend, but I will admit that with three children and back to school teaching full-time I am very worn out. It turns out that we had a birthday party this morning that I completely forgot about. This happens to be my best friend and her daughter. I feel like I'm going crazy sometimes. But I guess that's life. My lupus seems to be active right now, But I guess that's what happens when my body is going full force and I can't keep up. I am overdue for my infusion, at least I feel like it! This Wednesday should be my next infusion in Jackson, Tennessee...and I cannot wait. It seems that I really do need my medication even when I feel good. I'm looking forward to my date with Ben (Benlysta that is)!

I have been doing so well this summer with my lupus everything seems to of been settled. The last flare I had was when things happened with my family, this past September, and it had put my body back a little bit with the stress that came from wearing. Once I had gotten over that hump, things settle down. I guess that's life with lupus! There will always be times where I am overdoing it without knowing it and later realize it when I'm hurting.

Days like today make me grateful to feel good because I do hurt. And I've guaranteed and promised God that if he allows me to have the pain and spares my children that I will take the pain happily. So today through my tears, I'm smiling because it's me and not my kids. Having Hope with this this week has made me realize that it could be so much worse than it is, somebody always has it worse than I do. I am grateful for my health even when it is bad. I'm grateful to spend time with my children. God has been so good to me. And most days, including today, I see my lupus is a gift. A blessing even. To know that life is short and to appreciate every moment you have is probably not the norm in everyone's life. But when you have a chronic illness, you begin to appreciate every day and every moment that you have good, bad, and ugly.

I ask for prayers right now, for Hope and her mother Sarah. I cannot imagine being 24 having a small child and being in the hospital all the time unable to catch my breath to breathe. She is waiting on the double lung transplant right now. I pray for her. I pray for her family. I pray that God will give her the strength to get through this so that she will be able to live her life for God and with her child. Pray for the doctors, I pray for the insurance companies. Right now a lot of what's keeping her from having her lung transplant, is the fact that insurance won't approve it. It makes me upset and angry to think that someone's life could be in the in the hands of the insurance company and the only reason that nothing is moving forward as they don't want to pay for something that is a necessity and essential for someone's life.

So I'm sorry I haven't written in a while, life has been busy. I'm lucky that life has been busy. That means that I can live my life busily, not sick, and continuing to go even through the fatigue in the pain. That is a blessing in of itself.