Life is Hard

I should believe this...but sometimes I feel so overwhelmed with this "lonely" feeling that I find myself asking God why...not why lupus, not why do I have emotional difficulties to overcome, but why did you not give me someone to help me through all the hurdles life has to thrown at me? I'm assuming the most obvious answer is that He wants me to depend on no one but Him, He wants me to trust His path and purpose of everything in my life and that He is molding me with these experiences for some unknown but greater purpose. But my path sure is lonely and difficult right now. I know logically....that this too shall pass. I wish I could press fast forward or float through my life right now numb to reality. I'm just tired. Really tired.

Lots to catch up on!

Oh, it's been a whole and someone dhpd pop my hand, but I've just been exhausted with keeping up. Since Halloween we've had a lot going on....

We began reading chapter books!!! I can't believe how fast they grow up, be still my heart. 

Our elf, Milky has returned for CHRISTmas!

I got Thanksgiving ready and the house decorated, I even made a table arrangement (which reminds me of my momma). This DID exhaust me;)

At school, our Service Club, which I head up, had a "Week if Giving" and donated 140 gifts for Toys 4 Tots, among other things.

We also celebrated Thsnksgiving at school. I love my kiddos;)

We also attended our local Veteran's Day Parade .....

And got a new puppy.....which has exhausted my to no ends. This is why I didn't have a third child....mental note- do not agree with husband next time he wants a puppy. More in depth updates to come soon;)

Today, Lupus...you won;(

Happy Halloween week! Here is a throw back to 6 years ago...my daughter was 7 months old and I had recently been diagnosed with Lupus. I look SO healthy compared to now. SO young. I was 27. It is amazing how the past few years have aged my mind and body so much. I WANT MY BODY BACK!!!!! I could be upset that I feel sick and long for the perfect body I used to have, or I can appreciate the things I still have. I still have two healthy children!

And here is a Halloween picture from 4 years ago...time sure does fly!

And here I am now...on the sofa (the dreaded spot for fatigued  individuals) with pink checks, a tired and fattened body, and a defeated spirit...not to mention lots of other issues that are better left unsaid;) Lupus...I am sad to say that today was yours. You won. I struggled to get through a Sunday. I did NOT go to church;( I slept for hours and had help from my family to care for my children. I did not cook. I barely managed to wash and fold clothes. I did not shower. I tried to eat, but my stomach stayed hungry all day....for unmentioned reasons. I did not smile. I did not laugh. I wondered if tomorrow would be better...and now...I choose to leave today behind me and to try to think positively for tomorrow. For tomorrow, life begins again. The weekend is over and it's back to life. Back to school for the kiddos and back to work for me. Everyone is my life deserves more of me. Myself, my children, my husband, my classroom at work, my friends, my family, my God.....how do I give more when I have so little? This is my daily struggle (along with pain and fatigue). But, here is always tomorrow. And hopefully....

Date with Ben...Benlysta that is!

Date Day today...I'm not sure how many infusions this makes...40 something? My body was in dyer need today. I've been tired and exhausted and in a lot of joint pain. The pain has even made it hard to sleep. I'm sure my lupus is flaring because of all the stress with my sister....and yes, stress can make everything worse! I wouldn't have believed that stress can effect your health until I was diagnosed with lupus, but now I am a firm believer that stress and a lack of rest are my two biggest flare factors.      I try to find moments each day, moments that allow me to breathe and find the good in my day. This morning, I found a moment on the way to my doctor's office. These moments help me to get through all of my hurdles. We all have obstacles in our lives. I am trying to not let my struggles define my life but let the way I handle my struggles make my life what it is God has planned. 

 Not an easy week...this week has been an emotionally draining week.  Mental note, I need to try to look happier next week;)

 Another note, I'm going to start working out after sleeping off my infusion tomorrow. I am tired of feeling yucky and being thirty pounds heavier then should be. No excuses....not joints, fatigue, steroids, or eating to comfort myself. I want to look like myself again.

Georgia on our Minds

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?

We went with my mom to The Mistletoe Market on Saturday and did a little Christmas shopping...the kids loved it.

Who knew Target could be so entertaining too?

Our favorite purchase at Mistletoe Market was this gingerbread house, The Candy Cottage. It's a plastic gingerbread house that you can decorate and reuse!! The kids loved it!

Here is our finished Haunted Gingerbread House.

We also enjoyed the park with our cousins.

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.

Sick & Tired

     

     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.

http://youtu.be/UI1obeb3A9c

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!