Beginning Day 4

So we are up and at 'em...I had a terrible headache last night, sharp pain. One of the side effects from the Benlysta, I'm assuming. These headaches don't feel like any headache I had prior to starting these infusions, and its a listed and discussed side effect, so I'm assuming its because I just had my infusion. I'm also off of my arthritis medicine because it was literally eating away at my stomach. I've just started something new, put it takes a week to work. So this week is full of bad joint pain. My feet hurt so badly last night, that it hurt to touch the bottoms of them...like they were on fire. I've also started having sharp pains where my joints feel like they are about to give out on my left side...I'll be ready for this medicine to kick in and I'm hoping it will work (my last arthritis medicine that worked took us 4 years through trial and error to find). Well, enough about Lupus because I am still pretending that I don't have it....any intelligent person can see that is impossible.

Tip dancing on a chair while playing Starfall on the computer this morning to short sound U.

Ella McCray curled up on the sofa with our warm blankets waiting to leave for school. Her Daddy is taking her this morning, which is a real treat for her...and me!

So here's to the rest of our day! I have an appointment this morning at my hematologist (blood specialist) for my annual since my Lupus has caused a bleeding disorder. I've already started a crock pot for roast tonight and I plan on going to WalMart for a couple things and then I have a PTO Committee meeting this evening, plus a few pick ups and errands! Here's what we are looking like this morning!



Making a pot roast..my recipe uses one can of cream of mushroom, one packet of dry onion soup mix, and when I get back at lunch I'll add in a bag of red potatoes and a bag of carrots. Yummy and no work!

Preoccupied Day #3

I have found that staying busy makes it easier to not think about things, so I am trying to stay super busy. This morning has flown my with the help of two toddler boys and the house that needed some attention! Now, it's off to pick up 2 more from preschool. I think today will be my catch-up day. I am still in pajamas...that's right I have dropped off my daughter at preschool while I was in my pajamas and I might be picking her up in my pajamas too--at least I don't have to get out of the car! I need to catch up on my couponing, which I love and it really helps cut back on our budget! I'll try to post some info related to couponing later because I do think it helps since I have a lot of medical bills!If anyone is going at making budget changes I would recommend couponing! I'm thinking that tonight might be taco night (I need something easy). Have I mentioned how much I love Pinterest? It helps so much with finding great recipes and crafts for the kiddos!

Here's a couple of my favorite Stay at Home Mom sights that have great ideas...I do usually do stuff with my kids and whomever else I keep, but I didn't do anything today.
1. http://playathomemom3.blogspot.com/ - This site has great activities to keep your children engaged while at home. There are great ideas for learning, summer, and even family fun nights!


We are definitely going to do this letter hunt on Friday!! So cute and easy!

2. www.notimeforflashcards.com - This site has great learning activities that focus on getting your toddler ready for school. I love their kinesthetic and hands-on projects and they do lots of crafts!

 

3. www.starfall.com - This website is a toddler teaching MUST. It has videos that teach letter recognition and letter sounds for all 26 letters of the alphabet, plus it helps you learn to read. I discovered it when I was teaching, it was a site that all of the teachers use in the classrooms. It is free, but for $34.99 (?) you can subscribe for up to 3 computers for a year for www.morestarfall.com, and they have added Math, Nursery Rhymes and more. We have it and love it! They also have an app for your smart phones.

New Day #2- I'm Too Busy!

So today is day 2 of "My life without Lupus", so to speak. I am going full force. I got the kids up and ready this morning and then, without a shower because there wasn't enough time, I got ready and headed up to Ella McCray's school to help the teachers with their classroom art projects for the PTO Fundraiser on Feb. 9th that I'm heading up!! My friend Kate came along as well with her 2 year old Jack, and she watched the boys while I rotated through the preschool and did all the kids fingerprints!! Feeling good....about my accomplishments. Since then, I've also gone to the grocery store, made PTO phone calls, rescheduled my Benlysta infusion, and completed one of the teacher's (my friend Beth) art project for her class. I painted four plates..

cute so far, but tomorrow we have to add all of her classes' fingerprints to make fruit!! I love arts and crafts, that's part of why I love teaching kindergarten! I will have to admit that I drove through and got fast food for the kids today, which I do not do that often. Now, I am off to take a shower while the kids are napping and then we will be going to a friend's Premier Jewelry Party. They have cute stuff.See there website here!


After that it's dinner, bath, and bed and then I'll be ready to go tomorrow!!! I'm doing okay "being normal" so far, but I can feel my body yelling SLOW DOWN...it's just going to have to hold on. I'm busy!!

New Day #1

It's been a busy day..and long, but I made it! I survived my "first day without Lupus" so to speak! But, honestly, I am extremely aware (because my body aches and I'm exhausted) that I might not be able to pretend I don't have Lupus for too many more days...I am determined to take back my life though.



This is my banner I'm holding up at the end of today. I need inspiration! God be good to me!

Boys, Boys, Boys

Good start this morning! Tip woke up at 6:40 ready to play with his new rug that his Doe Doe (my Mom) bought him while I was home. We have two friends over this morning to play and they couldn't be happier. I also have phone calls to make, bills to pay, a house to clean, laundry to put up, and PTO stuff to get in order for tonight's meeting. I volunteered this year to be PTO Vice President and now the Chair for the Silent Auction Committee for our Annual Fundraising event. I hate to think that I can't do things, so I try to constantly prove that I can. Here's to my busy day with NO LUPUS!! It's all in how you look at things!

Here's Tip playing with his new rug and his trucks!

Our friend Aiden who is going to be staying with us during the days!

Our friend Jack who we picked up this morning for our boys play day!

Made It Home

Six hours alone in a car is a lot of think time...a lot of reflecting and planning. So on my ride home through Tennessee I thought a lot of things. But one of the biggies is I decided I'm done with Lupus! This might sound stupid or smart, naive or brilliant, genius or desperate....I'm not sure how it sounds. But today, its how I feel. I will forever be on Benlysta infusions every 4 weeks along with lots of other meds, but I want to be normal. I want to accept the kindergarten teaching position for next year that I've been offered. I want to exercise and get my body back...20 pounds of steroids back! I am done. I am living each day as if I were normal (logically, I am aware that this might not be possible). I am a very independent person. When I had just graduated college I wanted to move into my new house and no one was available to help me the day I wanted to move, and I didn't want to wait a second more, so I moved it all myself-I loaded an entire house up in a truck and unloaded alone- mattresses, boxsprings, dressers, closets full of clothes, china cabinets and sofas. This 115 pound girl (at the time) did it all and never batted an eye...I want her back!! I want to be ME again...so I'm done with Lupus, I wash my hands of it. I'm going to make a call in the morning and accept my dream job for next year, no matter what my body thinks! I'm going to start exercising tomorrow! I'm also starting to watch two children out of my home tomorrow...LIFE, I'M BACK!!

Driving Home

Just getting on the road for my 6 hour trip home!! Ready to be home, I'll post more this evening.

The Morning After

So it's 1:00 and I just got up. The day after my infusions in always drained. I'm assuming that my body is working hard with my medicine, but nevertheless, I have found that sleeping most if the "morning after" helps me to feel better for the next 4 week period until my next infusion. I'm also sore this morning. I had to have a skin biopsy done yesterday and that left 4 stitches, which I wasn't expecting. My dermatologist said I wouldn't have to worry about infection, but I'm a little anxious having an open wound the day of my infusion that makes me more susceptible to infections, so I'm going to be diligent about caring for the stitches and hope to avoid any problems.
Yesterday was a good day for me. Infusion, check. Biopsy, check. Mexican for supper with my mom and sweet sister, check. Shopping with mom, check. Sofa time with my family, check. It was a pretty good day:)
So, today will be a lazy day. Laying around watching Runaway Bride and then going over to my sister's house for her one year old's birthday with our family. Hope you enjoy a lazy day too! (On another note, my husband seems to be doing fine with both children while I'm here for medical treatment....yeah!)
I did happen to stop by Trader Joes yesterday to stock up on our favorite 2 Buck Chuck!!! Wine for $2, you can't beat it!!

Date time

I'm still getting my infusion. It usually takes a couple hours, but she said its running slow for some reason today. I snuck a picture, I didn't want the infusion nurses to think I am crazy, but I'm really trying to take more pictures, even though I hate seeing myself.

Date with Ben

Today is my 12th date with Ben....my Benlysta infusion to all those readers who aren't taking this medicine. I'm lucky to have such a great rheumatologist office. There office staff is wonderful! So this morning I brought them a chocolate cake to say thanks for everything they do. I went to a cute bakery here in Marietta called Gabriel's, they have great stuff. So I'm off to have my infusion IV and then I have a biopsy scheduled for this afternoon...here's to hoping that everything goes the way it's supposed to. God please show me your will today, not mine.

Dr update

Just left my rheumy's office....a little relieved. He said I need to get a biopsy and if it comes back discoid lesions then we start CellCept , not what I was expecting, but it is a chemo drug. We also changed one medication and are testing cortisol levels to see about switching from prednisone to hydrocortisone. Then we start tapering off steroids, but no matter what I stay on my biological infusions of Benlysta. Not exactly what I was expecting, because if the biopsy comes back negative we don't start the chemo, but I'll take what I can get. Now it's time for praying!

Here is a picture of my great doctor, Dr. Gary Meyerson.....he's awesome! And yes Atlanta traffic always stinks, even after 6!

Doctor day

I just got up!!! Slept in this morning, which is so very wonderful for my tired body! Now I'm up and showered and getting ready to have a lunch date!! My mom has a friend who has RA and has undergone chemo, so she's set up a lunch so that I can talk to her while I'm in town. I'm already grateful that this is happening and a little nervous too. So now it's off to a big day!!! My doctors appointment isn't until 4:20 (and I usually wait 3 hours until I see him), but he's the BEST and worth driving and waiting to see, he's a true expert on Lupus!! I'll let you know how everything goes in a bit!!

Funny, I'm almost 32 years old, but going in my mom's closet this morning and putting on her perfumes made me feel like a kid again. All day long I'll get whiffs of her perfume and be grateful that I'm here getting to see my family! (Ready for my day with my trusty cowboy boots, don't know if it even matches, making it look good today!) Here's to the spunky me that's been missing for so long!!

Georgia Bound

So....what a day. I'm in GA for my doctor's appointment tomorrow to discuss chemo and then my Benlysta infusion on Friday and a whole day of sleeping on Saturday (my infusions drain my body). Today's been long. Insurance problems that had to be sorted out so that my $4000 prescription and costly treatment can be covered by our new costly Cobra insurance!! Watched a couple toddlers, cleaned the house and left everything in order for my husband to take care of the kids, and drove 6 hours. My energy is running low and my joints couldn't have hurt more on that 6 hours of not being able to stretch out.
I'm extremely anxious about tomorrow, although I know worrying won't change anything. I keep going over the conversation I'm going to have with my dr tomorrow, rehearsing what I need to make sure to tell him.
Long day, and I'm emotionally drained and needy. I wish on days like today that someone else got what I go through.
Well, I'm going to get in the bed and watch a little tv with my mom while I'm home visiting!

Pushing Through

Sorry I didn't post this morning, I was a substitute teacher today at my daughter's preschool and was up and out the door pretty early. I had a rough night last night....constant stomach issues that kept my awake through most of the night, then to make it even better, I began hemorrhaging this morning before I left. So I can say I needed today. I needed to be distracted with normalcy. I miss teaching and hope that I might be able to go back to teaching kindergarten next year at my daughter's school. That's also why I want to start chemo, the possibility of remission and a shot at being normal!
So after teaching 14 4 year olds, we came home at noon (and brought one of our sweet classmates with us). Then it was on to lunch for 3 kiddos and nap for the 2 year old. The girls played in their playhouse until our friend's mom got here around 3:30. Now, I'm making spaghetti to take to a friend tonight. I've also made enough to send some to our sweet elderly neighbors, and a friend who lost his mom to COPD just last month and a bit for us. I'm trying. Trying to do good for others who need it. There will come a time when I need help from others. I know it...and it might not be far away. Plus, doing things like I have yesterday and today- nonstop- makes me feel normal again. Now, all the hurting and stomach issues, and the fatigue sure make me think that the Lupus has won after these two days, but I refuse to stop living my life or give up things that make me who I am.

Another crock pot night. Making my Mom's spaghetti for everyone.

I also made a "Me Box" for my sweet friend we're taking dinner to tonight. She is going through a divorce with three small children and I want her to know that her friends love her! I packed it with a lot of things to pamper yourself (fingernail polish, bath salts, candy, razors, make-up, etc.). I hope this makes her feel loved and that she knows God will get her through this.

Super Woman

 It's official...I feel like Super Woman today! Today, I have: cleaned up the house, done laundry, put away dishes and washed another load, made snowflake artwork with my preschoolers, made and cleaned up lunch, helped my husband move a broken 4-wheeler, sent and inspirational message to my little sister, cut and organized coupons, put down little ones down for naps, taken a shower and put on make-up (this doesn't happen everyday), gone to Kroger and couponed for groceries, made phone calls to businesses to donate for our school PTO fundraiser (that I volunteered to chair!), unloaded groceries, cooked and cleaned up supper, gotten two children ready for bed......AND ALL WITHOUT A NAP or extra steroids!!!! I'm tired, and yes beer was on my grocery list...now I need to sit down and have a drink! Here's to being a stay-at-home mom. I hope my kids never realize my Lupus effected me!

This is my crock pot meal (recipe is on yesterday's post), but I did add cream cheese!! I then scooped this mixture into cresent rolls, wrapped them up and baked them! They were fabulous and HOT!

Sorry, I meant to take a picture of the final product, but after a grocery store visit, we were hungry and dug right in. I served it with fresh fruit and a brocolli raisin salad (my 2 year old loves raw brocolli).

 

 

I forgot to say that there was also a beauty shop at our house today!!! She's a natural...or maybe we need to give a few more lessons!

 

Here's what Ella McCray did to me!!! I look like a clown!

MLK Day

Woke up with  slight malar rash across my face this morning, probably because I finally took Christmas down yesterday! It was a bit of work, and I hauled the tubs across the yard, but I certainly didn't feel exhausted yesterday, so I am a bit surprised to see my rosey cheeks this morning.
It's also MLK Day today, so no school! Coming from a former teacher, holidays like this were always a fond memory because it meant sleeping in and relaxing! Now, I don't get to sleep in, but I do get to play and do arts and crafts all morning with the kiddos, my coffee and pajamas! Here's to a relaxing day!

Snowman artwork

And yes, I think I'm going to try this crockpot recipe today! Sounded perfect for a cold day!! And easy! I'll let you know how it turns out!

End of the Day

End of the day and.....we had fun with our cousins, and I did not make good on my resolution this year of making a crock pot meal every Sunday..we did instead go out to eat Chinese for our cousin, Charlie Beth's, 9th birthday! I guess that means we wouldn't have gotten to eat it if I'd made it. Note to self....keep frozen chicken on hand always. I did find this great recipe I'm going to make next Sunday!

Crock Pot Spicy Buffalo Ranch Chicken

Ingredients

3 pounds chicken
1 package Hidden Valley Ranch mix (dry mix)
1 bottle Franks Red Hot Buffalo Sauce – Hot Buffalo

You could easily use a milder form of Franks Red Hot if you do not want it super spicy.

Directions
Place chicken in the crock pot, pour Franks Red Hot Buffalo Sauce over the chicken, Sprinkle the Hidden Valley Ranch mix over the top.
Cook on medium for 6 hours
Shred the chicken and enjoy

(recipe found on Tammilee Tips Blog)

Ella McCray and our cousin Hattie

Tip watching Cars

Farewell to Larry

Today we started with our regular Sunday morning routine. Up, breakfast and coffee, getting showered and everyone dressed and ready for Sunday School and Church. We were out the door right on time....we turned onto the main road AND...... there was our sweet Larry (our cat) lying in the middle of the road. Cliff brought it to my attention and then turned the car around to check and make sure it was our cat. Sure enough, it was. Ella McCray started crying.  Cliff jumped out of the car and went to get her lifeless body and take her home to be buried after church.

This is not the first animal we've lost to God. We live out in the country and strays turn up here all the time. They also die here a lot...I think this is the 9th animal we've buried in our yard...not including our pet turkey (he wasn't lucky enough to be buried). Ella McCray cried to see Larry (who is a female cat-I know Larry isn't a beautiful girly name) one last time before she was buried. As a mother, my first thought was to protect her. I told my husband to go ahead and bury her and I'd deal with our grieving 4 year old. She was not happy when she found out she had been buried without her seeing her for a last time, but I could not bring myself to let her see what the cat looked like (tongue hanging out, bloody, and stiff)...I hope my children never have to deal with my death, or at least not while they are young. Sometimes I fear what might happen to them if my Lupus gets out of control. Today was a reminder that life is short. I know it was just our cat, but it makes you start to think about your own mortality and uncertainties. Today's lesson in Sunday school was about prioritizing your life. God should come first, then your spouse, then your family, then your work, then your ministries. Today I know I need to work on putting God at the top of my list. Today I am thankful for my God. He is great and He is forgiving.

Today

Today I got up tired, just like I do every morning. I am never fully rested. I could sleep all day, but life calls and I'm answering. My two sweet children need a mom to lead them through the day. So up and at 'em! My day always starts with my thyroid medicine, then I have to wait one hour to eat or drink anything else. One long hour later, my coffee is waiting on me, calling me! I need it. The caffeine helps wake me up a bit. After my coffee, I'm on to the rest of my meds. 10 more pills to choke down...but now I'm ready for the day!! My 4 year old asked me why I have to take so much medicine, and I tried to explain to her, without scaring or tainting her, that mommy's body needs these medicines to stay healthy...how else do you explain it? I don't want her to know how I really feel. I make a point to never complain in front of my kids. Mostly because they have a 25% chance of developing Lupus later on in life, and I do not want them mimicking my symptoms because they've heard it. I want to know that if they are complaining of a symptom that could be Lupus related that it is genuine.
So on with my day...life is short and you never know when it could be your last. I try to live my life through my Lupus, as if it doesn't exist other as a reminder of how fragile we are. I hope today is a good day. I'll let you know!

Ella McCray & Tip dressed up as Red and Wyatt from Super Why! They put the US in LupUS for me today...together we can get through this!!

A Night Out with the Girls!

So last night was Bunko! We all get together one day a month to play and have fun. I look forward to this every month. It's my reason to get dressed up and leave the house...BY MYSELF, other than grocery shopping. I love my friends. I have been very blessed in my life. I live 6 hours from my hometown and my family in Marietta, GA. So having great friends is so very important. They are my support system and help when I need it. Here are a couple pictures from last night, see I'm trying on the pictures (although in all honesty when I look at myself I still am disgusted with what I look like and all the rolls, darn prednisone).

Everyone needs someone to lean on!