Our Invincible Army

        We as a family enjoy taking turns. There is no reason to hog all the visits to the local hospital as a patient.  This is usually a twice a year event. Sunny and I tend to keep this to ourselves  but once in a while we allow Jim or Elliott to take a turn.  Being a good sibling, Sunny is sharing her turn with Elliott. They have a long history of taking turns in the hospital.  We joke that we helped pay for the new wing at Cincinnati Childrens.  All joking aside we paid for at least the flooring.  They could of at least asked for our opinion of carpeting or laminate.
     Here in Bryan we have assisted in funding the new hospital. You know I never thought of it this way but when we move to a new town the hospital gets a makeover. I really think Jim and I should find something else to invest in.
    All kidding aside tomorrow Elliott is going in for a few tests. He is being checked for some stomach issues and  gets to have an upper gi and blood work (ruling out diabetes since it can run in families).  He takes it all in stride. We all have a strength we don't know is within us until it is needed.  
    As a family we have been reading The Bronze Bow, a story about a boy growing up near Galilee when Jesus was beginning his ministry. He is conflicted with the idea of love and forgiveness and fighting for freedom from the Romans. A friend shares a scripture about how God has given King David the strength to bend a bronze bow with his hands.  This morning I felt an urging from God to sit outside and have my coffee with him. Not pray for anything. Just be. I had so much to do but decided everything else could wait. It was well worth it. I opened my bible app and with my eyes closed pressed a scripture to meditate on.  It was a scripture I studied earlier this week. It is quoted by Habakkuk and contains the bronze bow reference also.  It is about the strength God gives us along our path.  God is so AMAZING!! So tomorrow as I sit in the hospital with Elliott, our family will have our own invincible army from God to fight away our fears.

Psalm 18:31-36
For who is God, but the Lord? And who is a rock, except our God?— the God who equipped me with strength and made my way blameless. He made my feet like the feet of a deer and set me secure on the heights. He trains my hands for war, so that my arms can bend a bow of bronze. You have given me the shield of your salvation, and your right hand supported me, and your gentleness made me great. You gave me a wide path for my steps and my feet did not slip.

When God Says It's Time

It is done. I have been planning on doing it for awhile. Something always stops me. I made a decision. Today will be the day. Nothing will stop me.  I did it. I dropped off our adoption application. This has been a dream of Jim and I since before Elliott was born.  Something quiet in our hearts started speaking to us. There are children who are brothers and sisters that want to grow up together but may never have the chance. Children by no fault of their own who are waiting to know they are loved and belong to a family who will love them forever. 

We first started this process 11 years ago. It was after we lost our fifth child.  I was told my Lupus was terminal during my pregnancy with Sunny and because of a miracle we both survived. We knew why I could not carry children and the impact it would continue to have on my health.  We wanted a family so we started the adoption process.  There wasn't much discussion we both were drawn to the idea of bringing a set of siblings out of the foster care system. 

We had to stop the first process after finding out I was pregnant with Elliott.  We didn't know how my health would handle another pregnancy.  We were blessed to make it through with no complications.  We considered continuing after his birth but he was diagnosed with a genetic seizure disorder.   Six years later we started again. Jim was injured at work during our training, and we put it on hold again.  After he recovered we returned to the process again, then Sunny was diagnosed with Type 1 Diabetes. I began to give up. Two years later I developed one of my worst Lupus flares. We were done. I had written in my prayer journal about these children that are out there who belong to our family and are waiting to come home.  I mourned for the idea of bringing these children home as I had mourned the loss of being able to carry more children.  Every time I saw a pregnant woman or hear of a families' successful adoption the tears would come to my eyes. I ended up in a dark place where I had to acknowledge my bitterness towards my situation and learn to accept it.  I am so thankful for the two children I have been blessed with but there seems to be an emptiness where I know more children should belong. I was so angry that God would take away this opportunity to love and raise more children. Each time the door closed. Was God really telling me no? 

I began to realize God's plan is always perfect.  In my life no matter how bad a situation was I can look back and know He brought about something amazing. Last spring that quiet voice started speaking again. It is time.  Don't be afraid. Don't let the fear of the unknown stop you.  Keep praying, you're children are waiting to come home. We will be waiting for when God says its time to bring them home.

One Half Closer

Today I am lowering my prednisone by a half. One little half.  That one half means I am one half closer to being completely off my prednisone. It has been 3 years since I came into this Lupus flare. It seems like forever.  Maybe that has to do with the fact my memory was gone for half the time. Which makes it kinda nice since I don't quite remember how bad it was. I have a walker in my garage to remind me how my Lupus affected my Central Nervous System and I was losing my ability to walk. I do have a great story about leaving a dressing room without my pants on and countless stories about friends who fed my family and cleaned my home until I could stand on my own two feet. To get out of my flare I started on 60mg of  prednisone along with receiving weekly doses intravenously of 1000mg of Solumedrol, 1000mg daily of CellCept (an anti-rejection immunosuppressent drug), and my old faithful 400mg of Plaquanil (an anti-malarial drug).  Now I am down to 4.5mg of prednisone, CellCept, and Plaquanil.  Every two weeks I get to take the prednisone down half, as long as my Lupus remains in remission I keep going down.  Eventually I may even get to stop the CellCept. 

I really am bad about taking medication.  I know it is what has saved my life, but it is a constant  reminder that I am sick, that I am waiting on a miracle for this Lupus to be cured.  Until that day I will never have a day that I can go outside my home and allow the sunshine on my face, open my drapes and let the sunlight brighten my home, awaken in the morning able to move without stiffness and pain, and not feel fatigue as I begin my day.  However with these drugs my life has become easier. Most days I feel almost normal, I can get out of bed with in ten minutes, finish a chore or two before I need to rest, and make dinner for my family. Today, I will celebrate with my family that I am below 5mg, one half closer to a med free remission.  And I will keep hoping for my miracle, a Lupus cure.

Ketosis Strikes Again

Well it has been less than 1 week since our last encounter and it has struck again.  This is a new venture for us. One we would rather not take.  Sunny normally may develop ketosis once every two years, now it seems to be a weekly encounter.

This morning I was awakened by Sunny telling me her pump wasn't working.  So we checked the battery. It was dead, found a new battery, it was dead. At 7 am I went in search of the ultra expensive hard to find battery at Walmart. Where 15 other people with full carts are trying to check out in the 1 lane open.  I only want to buy 1 package of overpriced batteries and leave. While I spent 20 minutes in line Elliott texted me that Sunny had large ketones and what should they do. I hardly ever get impatient at the grocery store, it's usually my child free quiet time.  But today the employee who cashed her check in the only open lane and  stood chatting with the cashier almost brought out the mama bear in me to yell I have a sick child who's life depends on this battery. Technically her life doesn't depend on the battery, it is insulin we depend on, the battery just makes it easier.  As for yelling at the cashier, who also insisted in cleaning the counter between every customer, I left that up to the grumpy older gentleman, who noticed two managers having a chat, he let them know how WE felt about standing in line. Two lanes immediately opened.

As soon as I was home we started checking symptoms, giving shots, and playing phone tag with doctors.  Luckily by lunch time she was back to normal, able to eat, and ready for a nap.  I think I just may take a nap too.

Fears and What if?

I knew that being a mom would require me to partake in a few sleepless nights.  I was ecstatic when my children slept through the night on a regular basis. Unfortunately being a parent of a Type 1 Diabetic is reminiscent of those months of infant wake up calls. Usually now my wake up calls belong to an alarm clock every two-three hours a night, a few days a month.  I do this to make sure Sunny's blood sugar is staying level through the night and sometimes just to reassure myself everything Sunny ate was covered correctly; too low she may go into severe hypoglycemia or too high she develops hyperglycemia which leads to ketones. 
Ketones or Diabetic ketoacidosis is a serious complication of diabetes that occurs when your body produces very high levels of blood acids called ketones. Diabetic ketoacidosis develops when you don't have enough insulin in your body. Without enough insulin, your body begins to break down fat as an alternate fuel. This produces toxic acids in the bloodstream called ketones, which can lead to diabetic ketoacidosis if untreated. Diabetic ketoacidosis signs and symptoms often develop quickly. Here are the symptoms:
Excessive thirst and urination
Abdominal pain, nausea, and/or vomiting
Loss of appetite
Weakness or fatigue
Shortness of breath
Sweet scented breath
For many diabetics ketosis will lead to their diagnosis.  It is also something we deal with more than we would like. It often means long nights and days, a lot of vomit (there is a reason I never wanted to be a nurse), paging doctors at inconvenient times (we are very blessed to have doctors call in prescriptions or guide us through what to do), arguing with ER staff that your child does not have a gastrointestinal virus (they're always very polite after getting off the phone with her specialist) and trusting that when we give her an enormous amount of insulin she will survive (we did learn a new trick this past weekend - give her a piece of candy to keep her from going to low - maybe there is a reason we keep Dum Dums in the house). 
 All joking aside ketosis is extremely dangerous and can result in fatality.  As a mother that alone could keep me up at night.  The fear that what if I somehow made a mistake when I thought I had done everything correctly. I cannot live in fear of what if. Instead I  choose to live in faith. Faith that God will keep her safe, He will give me the wisdom and strength I need to be her mother, and she is mine because He trusts me with her and loves her more than I could ever imagine.

Confessions of a Cupcakeaholic

There are few things in life that I get very excited about.  Chocolate, getting deep into the word of God with friends, a great movie, going to the city, cheesecake, an iced white chocolate mocha, Brownie Obsession from TGIFridays, and cupcakes.  

Looking at this list I can see why I may have a problem with my weight :) I tend to compromise with the fact I have to give up being in the sun.  I also tend to use this as an explanation to Sunny when she catches me eating a treat. I explain to her you get to go out in the sun whenever you want. Yes, I know it's not very mature, but it does make us both laugh!

This past week we went to Washington D.C. For the 100th Anniversary of Girl Scouts.  We participated in the world's largest sing along,  visited the Smithsonian, many monuments, and made an unscheduled pit stop to Georgetown Cupcakes.  Georgetown Cupcakes has become famous due to the tv show DC Cupcakes.  I will admit it was not totally unscheduled. As soon as we knew we were going to D.C., we were trying to figure out how and when we could fit it in.  When I realized it was just a 5 minute drive from our hotel, I made an executive decision that we would be there. 

I knew it was meant to be after going around the block once and finding a parking spot in front of the building then only waiting 10 minutes in line.  We ordered a half dozen and of coarse I had to buy a hat.  On the trip home we enjoyed one each.  I saved two to savor at home. Now this is where I realize I may have problem.  As we arrived home our pet sitter was leaving, Jim asked me if I had one left to give her. I looked at my two cupcakes in my precious pink box and said no. I could not part with them. The next morning as I savored them for breakfast guilt began to set in.  I realized I may have a cupcake problem.  The first sign should have been when I worked at the mall, the snack shop had a hostess package and diet coke waiting for me every morning. When I worked for a catering company the pastry chef would have me sample the cakes. Then when I taught preschools I began to look forward to students birthdays in hopes parents would send in cupcakes. There were always extra but none ever made it home. I found out the hard way there isn't enough time to eat a cupcake on the car ride home from a trip to the grocery store in a small town. When we lived in Cincy I knew I could stop by the bakery counter for a treat to enjoy in traffic. There also may be a reason I never make the kids clean out the car.

So I confess, I enjoy my cupcakes. I apologize in advance for not sharing. I can't be in the sun so why not enjoy a cupcake instead! (I probably should learn to enjoy in moderation though.)

Victim or Victor

A few weeks ago there was an article by a doctor who writes a syndicated column about health issues. His focus was Lupus. I was very excited. I love seeing the general population receive information about Lupus besides by House on TV. I would love for the doctor to look at me like they do on House and say "Maybe its Lupus" then they say no it's this terrible ailment that no one has ever heard about. It never is Lupus on those shows because you can't treat it, walk out of the hospital, and get on with your life. Lupus is messy and always present. Even in remission. I am finally in remission after 3 years of fighting Lupus in my spinal fluid, it has been a long battle. A battle that has taught me many important life lessons, such as humility. Lessons I am truly thankful for. I could have done with a little less pain, but yes I am thankful for the difficulties I went through. Which brings me back to the syndicated doctor in our local paper. He was educating the relative of a newly diagnosed Lupus patient. I thought he covered all the important information about Lupus very well. Then he wrote the phrase - victims of Lupus. Victim. I am not a victim. I looked up the definition of victim it is a person harmed, the synonyms listed- sufferer, injured party, casualty, loss. So maybe I am a victim. I have suffered, my body has been injured and has the scars to prove it, I have lost plans I have made for myself, the ability to enjoy a sunny day. But I don't want to be a victim. Yes, one day this disease will more than likely take my life, I plan on being one of the 90% who live a normal life span. I have known many who fell into the 10%. My sister lived for only 5 years after her Lupus diagnosis. Then there was a woman I met through my Lupus Peer Group, she was in her early 70's. Neither of these remarkable ladies ever acted as if they were a victim. They were strong and encouraging until their last breath. I was sad to lose them, but thankful to know they were free of their suffering. I use many of the lessons they taught me. My sister would not like the victim word either, she was a fighter. I don't like the word victim because it makes me feel as if something is taken away, it is the end, or I have no say. But I do have a say. I have suffered and it has made me stronger, taught me to persevere;I have been injured and it has taught me new ways to do things, I have had loss and I have gained the enjoyment of a cloudy day, new hobbies I would never have tried. So by definition having Lupus makes me a victim, but I choose to live my life as a victor.