Lazy Rainy Day

I ran out to the grocery store last night to do my couponing...this is what I got at Kroger for $23.00 (also two more packs of wipes and 2 blood glucose monitors)!! Can you tell that I'm proud;)



 
When I got home, this is what I saw...Cliff had the kids out in the garden playing in the mud...yes, they are not dressed...although I was a little surprised, I have to say that they sure laughed a lot while they played in the mud!! I hope they remember some of these great experiences as they get older! Then we had our Family Fun Night...I hope they'll want to keep doing those as they get older...right now, they'll ask every night for a Family Fun Night! So we curled up on the sofa with a pizza, popcorn, candy and Wreck It Ralph...and beer!

And this morning, although rainy and cold, Ella McCray was super excited because Cliff got to take her to school for Donuts with Dad!

And Tip was excited because Cliff gave him a new hat! I hadn't mentioned it before, but Cliff has been out of town for almost everyday over the past 10 days...so the kids were very excited to see their daddy!

 

 

I also have raised over $550 for the Lupus Walk and sold 30 t-shirts, all in one day!!! Yeah! Got to keep on going! I also saw this today and thought it was a good Lupus visual!

 

http://www.thedoctorstv.com/videolib/init/914

 

I've been feeling great for the past two weeks, even though I've been taking care of the kids and doing everything alone while Cliff was out of town, but a couple nights ago I started having a severe sharp pain in my right back side. I ignored it, since a lot with my Lupus comes and goes or is never diagnosed or found, but it happened again last night. This time it started on the left side and then moved to both. My radar goes up...I think this sounds like my kidneys to me. But I'm going to give it a couple more days to clear up or worsen, so we'll see!

 

Walk to End Lupus

     So I'm getting ready for my annual Walk for Lupus.                                       

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I am from Marietta, GA and my rheumy is in Atlanta, so every year I go to Atlanta to participate in The Walk to End Lupus. I will also have to say that the GA chapter was part of the reason I was able to get in to see my AWESOME rheumy...so I am forever indebted to them (but they also raise more money in the Atlanta Walk than any other city in the US and give proceeds directly to Human Genome- the company who makes and manufactures Benlysta- to help with the study and development of new drugs to treat Lupus).

In the past two years, my involvement in the fundraising process was not what I wanted it to be. Between tutoring a sweet 5 year old that was diagnosed and treated for medullablastoma (Cancer) and then being too tired, I have been preoccupied with bigger life issues. So this year I am hitting the ground running. I feel great...thanks to Benlysta! And it's time to do my part to help find a cure! I have started a team called Cissy's Soles, and my goal is to raise $5,000 this year for the walk. Right now, I'm just at $275, but any amount, no matter the size, can help me reach my goal. Please visit my page and make a donation if you or a loved one has been effected by this terrible disease.

www.lupuswalkatlanta.com/cissysoles

I have also designed team t-shirts to wear at the race and sale, with all of the proceeds going to the LFA, GA Chapter. If you are interested in ordering one, please contact me and let me know! They are $16 and the shirts are a sport fit in heather grey. They are available in adult and youth sizes;)

 

Now, Cliff and I are gearing up for our Annual Crawfish Boil and Walk for Lupus Fundraiser on April 20th!! I'm so exciting and I can't wait to post pictures and our outcome for donations!!

 

(This is our invitation...but not our personal info!)

 

Benlysta Blog

So I have decided that today is going to be dedicated to Benlysta. For those of you without Lupus, this is the newest FDA approved drug to treat Lupus. It is an IV infusion and is the first drug designed to treat Lupus, as well as the only drug to be FDA approved to treat Lupus in over 52 years! This is my newest medication that was added to my already established arsenal of drugs. I LOVE it...it has given me my life back. It did not cure my Lupus, but it surely has helped reduce my flare activity and helped me to hurt less and be less fatigued.

 

Everybody's body reacts differently to any drug, so I won't make a blanketed statement that this drug will work for everyone, but it has done wonders for me! My doctor's office administers this IV to at least 18 patients, and the nurses told me that every one of them had a positive reaction to the drug...now some had to stop their infusions for different reasons (like insurance, costs, or infections) but I was told that every patient could tell a difference in a positive direction.

This was exciting to me as I started my infusions, but I wasn't 100% that I would fit into that category of 'patients helped'...it sounded to good to be true. Time is a testament. After one year of infusions every 4 weeks, I feel better than I have since my diagnosis. This drug works and if you have Lupus, I would highly recommend you fighting to try Benlysta---I call my infusions my "date with Ben". This is a date night any Lupus patient could benefit from, even if it was only a small difference. My results did not show until after 3 weeks, but my body has not been responsive to any other drugs prescribed by my rhuemy (other than prednisone) over the past 5 years. Please, do the research if you or a loved one has Lupus and consider this drug;) I'm hooked!

 

Here are a couple sites that I like relating to Benlysta:

1. http://www.benlysta.com/

2.Lupus Research Institute: What is Benlysta?

3.FDA- Benlysta

 

I am also a member of a wonderful Facebook Community called Benlysta Buddies, where you can go and chat and read what other Lupus patients taking Benlysta experience. This is my daily go to guide. An absolute LOVE!

 

 

Ben, Ben, what would I do,

If ever I had to live without you?

I'd probably hurt and feel pretty blue,

Who am I kidding, I couldn't make it through!

 

But on a serious note, I think tomorrow I will take a few minutes to write a thank you note to Human Genome, the company who manufactures Benlysta. As a matter of fact, this week I am going to try to thank some of the different doctors and people, as well as companies, that have helped me through my Lupus. We spend a lot of time critiquing those in the medical field that make things harder for people like us, constant and chronic patients, but I think I want to make sure I thank those big players in my physical changes lately! I'll let you know how that goes! God is good!

 

 

I Look Forward to Sundays

 

Today is Sunday and I always look forward to Sundays because we get to spend time as a family and because of church. We are very lucky that we have found a church where we feel comfortable and look forward to our Sunday school lessons and getting together with our friends.

Today's lesson was about being grateful for the things God has given you instead of worrying about the things you do not have or want. This is a big "trial" in my life. Having Lupus has its "tests," so to speak, on a daily basis. Worry creeps in and sometimes it leads my daily choices and decisions. Sometimes I worry about what my health will be, or if I won't be around to raise my children, or what I have to say no to because of my limitations with my Lupus. But with God's help, I have to trust that God has a plan for my life and that He will get me through my trials if I will just trust Him. Today made me glad that I have Lupus and grateful for the things I do have...I have two healthy children, I have a healthy husband to provide for us, I have a wonderful home to keep us warm, I have a church family that supports and helps us whenever we are in need, I have my arms to hug my children with, I have all that I need and I am blessed beyond measures. This is what I should always remember.

Ella McCray climbing on our play set in her p.j.s

Tip sliding while we enjoyed a little bit of play time outside since it finally feels nice!

Bebe playing softball with the kids.

Back to Life

Sorry about not posting for a couple of days...I've been tired and busy and there are some days that get one over on me...you know the days where you do not have enough time in the day to do all of the things on your To Do List! That's the way I feel right now. I had started another flare, surprise;), due to my tapering down on my steroids. Note to self: You CANNOT LIVE WITHOUT YOUR STEROIDS (or nothing under 5mg). It's not happening now, it hasn't happened in the past, and I might have to come to terms with the idea that it might not EVER happen in the future. Happy thoughts! My life will always be dependent on drugs...always! I went to the cabin with a group of my best girlfriends last night and we went out for dinner and shopping in Oxford, MS on the square (my old college town) and one of the girls said something about having to take 3 Advil and hating taking medicine...but I held my tongue! Sometimes you want to bark back about how they should consider themselves lucky to only need Advil every once in a while and not need an arsenal of meds each day...like 18 pills a day and one IV infusion...and that's not on a bad day where I have to add more Advil, Aleve, or pain meds!! But if you don't have Lupus, you wouldn't understand, so I held my tongue and might have responded with an "I know."

 

I will have to say that our one evening away with no children and no husbands to care for was nice. We ate and drank and talked and watched movies! It was wonderful (except for the fact that I could barely sleep, I wasn't sure why since I took my sleeping meds, until this afternoon when I was unpacking my bag and found one of my sleeping pills in the bottom of my bag. It must have escaped my pill container without me noticing (which could have had something to do with the alcohol involved)!) All in all, it was a wonderful night off duty for life's responsibilities.

 

 

Here are some of the pictures from our busy days!

Ella McCray and Tip had to get their shots;( Ella McCray had to get 5 shots and she screamed bloody murder and cried the entire we were in the office, even before the shots...so much for my talk with her before hand about being a big girl and not crying. Little did I know she was going to cry, yell, and scream;( I was embarassed.

Tip didn't mind a bit...the sucker might have helped a bit!

We meet our friends Shea, Jae, and Colleen at Chick-Fil-A after shots for a play date.

I gave Tip a hair cut.

Cliff took Ella McCray to softball practice...she loves it, "but not the running part", she says!

We made footprint and hand print art that the Easter Bunny had left in their baskets. This was made by a cute company doodlebugs.

Here is Ella McCray's. I love that they have Bible verses on them too!

Tip's was a train, sorry I took this sideways.

I subbed at Ella McCray's school and they had their Trike-A-Thon for St. Jude.

Having a blast! Out school does this in honor of one of our students, Lucy Krull, who was diagnosed with medullablastoma 2 years ago...Go Lucy Go!

Ella McCray and her best friend Katie Jane...they could be trouble..or just cute!

Tip fell asleep eating jellybeans today at lunch time. His Daddy was home alone with them last night and I'm guessing that he didn't go to bed until later!

Here was the only picture from our stay at the cabin last night!!! Why did we not take more pictures...maybe you can tell from looking at the pictures;) We were living in the moment! Thanks Bebe for entertaining us!

Back in Kansas!

So glad to be home and able to post on my computer!!!! Today had been boring...which is great. My Lupus seems to be flaring, maybe due to trying to come down on my steroids, but that makes things a bit harder, or more painful. So my goal was to take it easy today. I HAD to go to the grocery since we were out of all fresh fruits and veggies and milk! And my kids LOVE milk. But otherwise we have taken it easy...no other plans, not even dinner.

My goal right now is to pay bills, organize events, and start planning for  The Walk to End Lupus in Atlanta.

                                 

 We always raise money and walk in the GA Lupus Walk. I do this for three reasons: 1. I want to help raise money to cure Lupus, 2. The Memphis chapter is not very active, 3. My family is from Marietta (15 from Atlanta) and the GA chapter has personally helped me find my AMAZING doctor and donates every bit of the money raised into furthering discovery into education and medicine to help cure Lupus (they work a lot with Human Genome, which is based in GA and also manufactured Benlysta, the med I am currently on and the only medicine targeted and designed to treat Lupus). So, this year, Cliff and I are designing t-shirts to sell and raise money and we are also having a fundraising event at our house in April to raise money for the walk. I helped two years ago raise over $5,000, but have been on hiatus the last bit, so this year I'm trying to hit the ground running! I'll post more once I have t-shirt designs back and my site up and going!

Home At Last

We drove 6 hours home today!! The kids were great but my body was not. It aches, no it hurts. I'm hurting so much tonight. I'm also so tired. I'm laying in bed right now, and tonight will be short and sweet so I can try to go to bed, it will be a fight between the fatigue and the pain.

Cliff got home earlier and then we loaded back up to head to Ella McCray's softball practice. She did well. She seems like a natural athlete (she must take after her mom-although my kids wouldn't know it thanks to Lupus)! Then we headed out to eat Mexican for our family night and we couldn't head home until we'd bought our little athlete some new cleats. She loved then so much she wore them out of the store.Tomorrow I will finish cleaning up the house, doing laundry, and the grocery store...and a NAP:) Good night.