Thursday, October 16, 2014
Sunday, September 28, 2014
So we left for Georgia at noon on Friday. Yes, that was a long day for me;) After being up late the night before and teaching, I drove 6 hours (although it turned into an 8 hour trip with traffic) with the kids. We came to visit my grandparents. We had a scare a few weeks ago. My grandfather was having some issues and ended up being rushed into surgery and having a pacemaker put in. This made me think about how often I come home now that my infusions aren't here. I decided that my grandparents are getting older and that I would not be able to live with myself if something happened to them and I hadn't been home to visit. So we came in to visit on our fall break. We will leave here tomorrow morning and head home so I can get my infusion in Jackson, TN on Thursday morning.
I'm exhausted. I'm hurting....a lot. But I'm trying to hang in here and keep my children entertained. My knees hurt so badly that it's hard to bend them and they are giving out on me walking up stairs. I'm sitting here on the sofa while the kids nap watching "Strage Medicine". They have discussed medical marijuana and bee sting therapy. The bee stings are used to help autoimmune diseases and rhuematory arthritis....hmm...I'm considering looking for a beehive right now. Crazy? Or desperate? Or a good natural alternative to pain?
And then today we went to Chuck E Cheese, their favorite treat so far. It was better than ice skating or the aquarium for me because I could sit down. Sad, but that weighs in on my decision making.
Tuesday, September 23, 2014
So this past week had been an emotional one for me. I do not usually mention my sister on this blog, for good reason, but this week all of my emotional stress and heartache has come from her situation...it's hard to decide what's ok to say and what needs to be left out. I am an honest person and do not hide things. That being said, I will be omitting some details to this part of my life until time has passed and things are easier to talk about...I can just say that it is a legal situation that will be in the media soon on a national level. Scary, disheartening, stressful, sad...... this, of course, makes my lupus more active. I am tired and hurting. My mind doesn't turn off. It's hard to not be consumed by this family matter. This, like everyone else's family matters, tears at everyone's hearts in the family. I can only turn to God in this time. God knows our limits and our needs. At this time, He knew I needed to be still. Ella McCray came down with a fever and threw up once Sunday night, so we have been home from school Monday and today. This wasn't my plan, but this rest was much needed. I believe that God was forcing me to be still and quiet. To listen. To find peace.
Luckily, the past two days have been beautiful. Cool but pleasant. We were able to get outside on Monday after picking Tip up from school and play in the back yard. I even served the kids supper outside on their picnic table. It was during this time that I felt God's presence. Sometimes when the sun catches an angle through the trees, or when your kids share an innocent giggle together, or you just feel peace in a still moment....you can feel like God is there and that everything is going to be ok. It was a moment of peace. A split second.
Last night Ella McCray still had a fever, so school was out for today. As a teacher, I feel very strongly about keeping my kids out of school until they are no longer contagious to any others, so with fever we must be fever-free for 24 hours. No fever today, so we were able to get outside this morning and decorate the front yard for fall. I'm not sure why, but each year I look forward to the beginning or spring and then beginning of fall when I can plant flowers in my window boxes. It makes me feel good. It is a form of therapy I guess. And I needed it today. Somehow, the weather, the rest, the flowers and the pumpkins have helped me to feel more at peace and rested. It doesn't fix everything. It doesn't make my worries disappear. It doesn't heal my heartbreak....but I'll take every happy moment I can every chance I can get.
This is the way I feel right now...broken, in pieces. I only can pray that this life and everything that happens to me is for God's glory. I pray that I will use my life and everything that I've been through to do God's will...whatever it may be.
Wednesday, September 17, 2014
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.
Sunday, September 14, 2014
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
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.
Friday, September 5, 2014
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.