Thursday, August 21, 2014

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.
A really good self reminder from a self confessed 'perfectionist' - those expectations are the only true disappointment.

Wednesday, August 20, 2014

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 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;)
Bad Day
             Just a hard day, not a bad day.Diy Home decor ideas on a budget. : Having to Re-Invent Yourself this Day and Age... I Had a Bad Day.

Monday, August 18, 2014

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.

Sunday, August 17, 2014

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.

Saturday, August 16, 2014

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 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.

Friday, July 18, 2014

Lots of Lupus Pros, and One Con

Every day is a gift from God. I am thankful for my chronic illness. No, you heard me right. I feel blessed for the understanding and compassion it has given me for the rest of my time here on this earth. I truly believe that God has a purpose for each if us, and through my sickness, I gained a closer walk in my faith. I also believe that God uses my illness in my life to help others and I am humbled to be a door for which He can walk through. As a matter of fact, sometimes, I feel badly for people that haven't faced a health problem. It sounds a little backwards, but I feel as if they can't live their lives to the fullest until they really understand what they could loose. This was a picture from my backyard the other evening as the sun set and Cliff and I celebrated our 8th anniversary (but we've dated and been together for 15 years) as we watched our kids play together.
We also have a new addition to our family, a bunny named Samson. So now we have three cats and a bunny (that's awesome because we had 23 last month)!
They love playing together;)
But there is a part of this chronic illness that I do NOT like at all- the weight gain with my meds. I hate looking at pictures of myself, this is one of the only ones I have from this summer. Now I'm on a mission-to loose 20-30 pounds. I have recently come off of my birth control, since it causes an increased risk with my blood-clotting disorder, and that has thrown my thyroid out of wack...and in turn I've gained a lot of weight. So I've started The 21 Day Fix. A healthy portioning and exercise program that has you eating the correct serving sizes or fruits, veggies, protein, and carbs. I'm working really hard, so I hope it helps. I need to call and make another appointment to have my thyroid levels rechecked and my medicine adjusted. I'll feel much better once I get this under control. CONTROL! I need some control of my body here.

Wednesday, July 9, 2014

Another Day

Today was just another day. Nothing extraordinary, nothing horrible, nothing really eventful. Sometimes this is blessing enough.
After having moments that are physically painful, and family events that are life shattering....having a normal day is very welcomed. 
My normal is still a "Lupus" normal, but that's not bad. I have had some joint pain, which is my most common side effect. I have had limited mobility (with pain) in my right shoulder, but otherwise I have felt good today.
I have done a handful or errands, household chores and painted with my kids, all before making dinner and picking vegetables from the garden. For someone with a chronic illness this is a very successful day. I also have done some work in my first grade classroom. I am truly in love with my job and look forward to getting my new class this year and having a ball learning with them this year. After not being able to work for a few years, God has blessed me with an exuberant joy for being able to work and use my spiritual gift. 
So yes, sometimes having an ordinary day can be fairly extraordinary;)
Here are some of my sweeties from last year while we were studying States of Matter!