Wednesday, September 17, 2014

Date with Benlysta Today


Well, today was my infusion. It went well. Uneventful is a good thing. Last month I had taken Benadryl before my infusion and it led to a mess trying to find my veins. It only takes me once, my learning curve is very quick. I will not make that mistake again.
So needless to say I did not take my Benadryl last night, even though my allergies were bothering me. It made this morning much easier getting my IV in place. I always try to make conversations with some of the other infusion patients in the room with me. It began as an inquiry process. I was talking to the people in the infusion room with me because I was curious to find out if anybody else was on the same medication. I wanted to find someone else on Benlysta so I could compare stories. After finding a couple people that were on the medication, I felt that I had enough information to find comfort in my "new and unknown" adventurous medication. Then I began to make conversation to pass the time. Now, it's almost like a therapy session. It's nice to find people that understand what you're going through. But I also think it's nice to give my advice to other people who are beginning their journey. Two and a half years on my medication and six and a half years into my lupus diagnosis and I feel knowledgable. I have a grip on my life and disease....don't get me wrong, a grip does not mean that I feel perfectly. Today I talked to a young girl, 25, who had just been diagnosed two months ago. Her name was Tristan. I hope that I passed on a few words of wisdom. I told her that although chronic illnesses are scary, they can also be a blessing. I told her that it took me five years to get things settled and find the right medication but that there is hope and at the end of the rainbow I now see my lupus as a gift. I feel like it's given me compassion towards others and more understanding in this lifetime. Life is short and we are all going to die. That's life, but somehow having a chronic illness can make you see things for what they are. Important and brief. You deal with what you aregiven  because you don't have any choice. You have to be strong. I prayed for her before I left today. I truly hope that it what she needed today to feel like this is something she can do, something she can get through.
My family has also had some stuff going on this week. My grandfather went into the hospital on Monday and had a pacemaker put in. This was not planned, but probably saved his life. This made me realize that maybe it was time for me to go back home for my infusions. This means driving six hours there, staying two days to sleep and then driving six hours back, while my kids stay home here with my husband. This will make things a little more difficult, but it will give me more rest. It will also give me more time with my family. I don't guess that's anything I would trade...not for all the driving in the world or all the money in the world. My family puts the "us" in lupus, they make my life worth living and fighting through.

Seeing my kiddos when they got home tonight made my night:) I brought home their Halloween costumes and boy were they a hit!

Sunday, September 14, 2014

Peace

Don’t mix bad words with your bad mood. You will have many opportunities to change a mood, but you will never get the opportunity to replace the words you spoke.
Trying hard to abide by this today. Some days are just bad. Situations and personal problems yesterday made for a bad day....Lord, I need your strength right now. I need you to step into my body and my thoughts and give me peace. Peace with everyone that I want to change. Peace instead of anger towards selfish people. Peace for things I can't change. Peace and grace to forgive those that continually hurt us. I pray for peace tonight.

Tuesday, September 9, 2014

Date Night


So yesterday was bad....bad enough that I was not a positive person. I wasn't looking on the bright side or counting my blessings. I don't usually have "pity parties", but yesterday I felt bad and didn't want to have lupus. I really wanted to get back in bed, roll over and cry and be alone or sleeping all day. I have an upper respiratory and sinus infection (I think), but no matter what it is, I feel bad. And when I feel bad, I am more emotional or sensitive. So today I went to work and thought to myself "maybe I could stay home and home school my kids from now on so I don't have to get up for work or to take the kids to school". That's tired....and I hate being that person. I want to be a positive person. A person who overcomes bad situations. Well, luckily, I got to work and had coworkers pray for me and then I got into my classroom and got lost in my first graders and life melted away a bit. What a blessing.
Today, my husband is taking me out on a date. It's been a while and this time together is much needed. This helps cheer me up (along with antibiotics)! It's true that God gives us a helpmate. What a perfect word to describe a spouse. We need each other. To be uplifted. To survive. To encourage. To love. It's amazing how much better things can seem with just a little understanding and perspective. My mom once told me that life is 10% situations and 90% perspective. It always stuck with me and helps me to remember that "this too shall pass". So, after sitting at the pharmacy drive through waiting for our prescriptions and typing this post, it's time to enjoy a date! Thank you God for getting me through yesterday. Today was much better.
Pics from Saturday. Cliff coaches Tip's soccer team. This day wore me out...lots we had to do. 

Friday, September 5, 2014

When you feel bad....do for others!


The measure of your life will not be in what you accumulate. But in what you give away #GivingTuesday Giving Inspiration
      So, I slept this entire past weekend and finally felt a little bit rested. This week has been long though, this is why I haven't posted in a week...I can barely find enough time in the days to do everything I need to do, much less everything I should do. And this wears me out!
     My mom always taught us that giving back to your community is what you are here to do. We went to soup kitchens and packed grocery sacks for families without food during the holidays. Our family never gave gifts to the adults at Christmas time, instead the adults adopted children in need to buy for and we would go shopping for these other families. If you knew of someone who needed something, you did what you could to help. This is why I chose as an adult to begin to give back. I believe that God desires and expects us to think of others more than ourselves and to help take care of each other. So I have begun to give back in my adult life and to set good examples for my children, to teach them of selflessness and giving. I have begun a food pantry at our church and coupon to try to help stock the pantry for families in need. I have also started a Service Club at our school. We meet once a month and get the kids involved in giving back to our community through acts of service...to be the hands and feet of Christ. It is during times when I struggle with my Lupus that I try my hardest to give. I believe that focusing on others helps distract my focus on my pain and hurt. It also makes me feel better to do good. And sometimes it reminds me that my bad isn't as bad as it could be, or as bad as other peoples situations. It could always be worse.
     So today our school made cards for a sweet girl in our community who is battling childhood cancer. My children and I came home and packaged up the cards, books, games, stickers and a huge stuffed horse and delivered them to her house. I'm grateful that I got the chance to take these things to her today...what strength she has. I only met her today, but in those few minutes I could tell that she is not a whiner or complainer. She was stung by a wasp as we talked with mom and never even shed a tear, which made me wonder what she is used to going through right now that a wasp sting was barely notable. There are so many things for us each to be thankful for. So many blessings that we have in our life, even if our health is not perfect.
     
     This month is National Childhood Cancer Awareness month. Please, if you know someone who is fighting childhood cancer, think...what could you do to give to them? How could your disease or chronic illness teach you to show compassion towards others? How can you use what you've gone through to give to someone else? And if you're not sick...what are you waiting for...you have more energy to give back!! No excuses. When you finish reading this get up and write a letter to someone you know who is having a hard time, or send a package to a stranger, or visit someone who is lonely, or bake some goodies for a neighbor...the possibilities are endless. 

Mother Teresa said many wise things, here are a few that have stuck with me.....
Mother Teresa- for some reason this has been the quote floating around in my head recently

"I alone cannot change the world, but I can cast a stone across the water to create many ripples." Mother Teresa




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.