A Lesson in Thankfulness Called Sunny

It is easy to look around and find something to be thankful for. Our families, friends, living in a country where we have freedoms, we have food on our table, beds to sleep in, and a roof over our heads. It is always easy to be thankful for the gifts we have been blessed with.
But what about being thankful for our trials. In 1 Thessalonians 5:16-18 we are reminded Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus. How often do we give thanks for our hardships? I can look back on my trials and choose to ask why God? Or I can look back on my trials and praise Him for the lessons he has taught me.
After having Sunny it was such a relief to hold her, it was easy to thank God for the blessing of a child. When she was 2 months she started bleeding profusely from hemangiomas. I took her to the doctor and was told I was overreacting. We were in the process of moving to Cincinnati and I decided to take her to a doctor there. She just didn't seem right. We had blood work done and headed home. Before we arrived home the doctors office had called telling us to get to the Children's Hospital. We were seen immediately and told they suspected she had Leukemia. They tested her and it was negative, but she had lost so much blood she developed a heart murmur and needed to replace 80%of her blood. Over the next few months she received blood transfusions, we would hold her down as she would be poked for a good vein over 50 times. Surgeons would be brought in for the last effort. The doctors decided the only way to stop the bleeding would be to remove them. It would require an 8 hour operation. It would be dangerous due to her size. It was our only option left. After the operation she stopped breathing on her own. When she was finally stable they let us see her. A few hours later her heart stopped. I was awakened by the alarms. They would rush in and bring her back. This would happen two more times. I have never prayed so incessantly. By morning she was in a comma, but finally breathing on her own and she had a smile on her face. Nurses started calling her Sunny. Then she woke up, no crying, she just started looking around with that little smile on her face. There was much rejoicing, tears of joy, and praise to God for an answered prayer. But why did we have to watch her suffer, why did she have this condition, why would we have to go through years of therapy to make her "normal"? Yes, I could praise God for saving her, but could I praise Him for the fear of losing my child, for all those painful memories.
I was given a gift through that experience; the gift of strength, of perseverance, of faith. As our life continues those gifts are used daily. They were blessings when Elliott had daily seizures and when Sunny was diagnosed with Type 1 Diabetes. Now I am truly thankful not only for the blessing of family and friends but also for the trials we will face that make us question how am I to overcome this. So, yes Lord, I will rejoice and give thanks to you when I see or feel suffering for you are giving us a gift. A lesson to how we will overcome our fears and trials.

Feeling Normal

Every once in a while I feel "normal". Today it is the opportunity to spend time with other Lupus warriors. Even though each one of us has a different story, a different list of symptoms, and a different treatment plan, we are all warriors against a body which fights against us. 

Recently I have been very blessed to be in a medicated remission. Most days I can honestly say I feel normal.  I am enjoying these good days and so blessed to have them. It is easy to forget what those bad days where like or worry about when they will return.  I know I can not live this way. I have to prepare myself for those bad days and those moments when the hopeless thoughts start to takeover.

Having an opportunity to be normal is a gift. It is received by being with other Lupus patients.  We are a gift to each other.  No one else can understand the inability to fold laundry (this is not to be confused with my deep hatred of folding laundry so maybe I should see this more often as a blessing) or feel  completely exhausted after getting up in the morning. 

I have been learning how important community is.  It is so easy to try to handle our emotional battles alone.  A physical need is easier to notice. That pile of laundry that took over the couch, but those emotional needs they can be easily hidden with a smile. They need to be taken care of too.  Sharing my emotions, as I am learning, is harder than dealing with my physical needs.  I can ask someone to fold the laundry, but to share my fears and hopeless moments that means being vulnerable. Being vulnerable to sharing emotions is an amazing release, an opening into a deepening relationship.  I have been surrounded by an amazing support system  from my family, friends, and "lupus family". My lupus family is my support group I attend monthly where I can be truly honest about how I am dealing with my "normal". So maybe I can learn to share that today is not a good day, that I am scared, or I am angry I have to cancel again because  I am too tired or in too much pain. I will still probably tell you with a smile!

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.

Hospitality

When I was newly married I dreamed of having these wonderful dinner parties. Then two things came to mind; one I don't like cooking and two I am an introvert. I love to be alone. I have no problem sitting in the coffee shop, watching a movie, or shopping alone. I rather enjoy it.

A few years back I began to have memory loss due to my Prednisone. To make sure it was just a medication side effect, I was given a full psych evaluation. I expected them to come back and say I was just a little nutty, but Instead the newly graduated doctorate in psychology (she bragged about it) informed me I was depressed, I was so depressed, I had convinced myself I was fine. She pointed out comments I had said yes to in the personality survey. I like to be alone. I enjoy being alone. I would rather be alone than with a group of people. I sometimes wish I was alone. After a few minutes she had me believing I was in denial and was severely depressed. -- I have dealt with depression and I had no symptoms. So I went home thinking how pathetic I must be. Luckily my family and friends reassured me that I was just me and I did go see a "therapist" to make the "Dr" happy. The therapist sent a report stating I was extremely well adjusted for what I have gone through with my illness along with caring for a child who has a medical condition. So there is nothing wrong with me saying I like to be alone.

It has come across my mind, being married to an extrovert that being with people is not all that bad. Jim is always saying lets have someone over for dinner. Of coarse the moment it is out of his mouth I begin the whole Mary vs Martha battle. Those people would be great to hang out with vs I need to dust, mop, hide the laundry, clean the kitchen, clean the stove, refrigerator, and microwave of caked on food, clean the base boards that will be seen from any sitting position in the house, clean off the stairs, what am I supposed to cook, what if they don't like my cooking, what if my cooking makes them sick. Usually I just happen to forget to invite them. I have realized through my children this may not be the best example of hospitality. When Jim asked if we could have a family over for dinner this week Elliott said "Mom doesn't want people over, because she doesn't like them." WHAT!! He thinks I don't like people, I love my friends and making new friends. But my kids think I don't like people. My selfishness and pride is teaching my children that things have to be perfect in order to show others hospitality, when what I want to teach them is it is about the fellowship.

I have a list of families I want to have over, many to say thank you for the help they gave during my last flare, others to just get to know better, or old friends to catch up. It will probably keep our family having company every week for the next year! Amazingly what comes to mind is not what am I going to feed these people and keep my house clean but WOW God has really blessed me.

Tonight we had a family over and it was wonderful, the night went by quickly. I almost cancelled. I woke up with a terrible headache and was ill for most of the day. Laying in bed I started thinking about all that had to be done, do I have enough time to get everything done. Then I thought of the most important question - will it be worth it. Yes. I have friends who I love to go visit because they have laundry in piles on the couch and who know what is stacked on the kitchen counters. It shows me, I am valuable to them. That is what I want to share with people they are valuable not the cleanliness of my home.

With or without a good Lupus day, I am going to invite people into my home. My dishes and floors may be dirty, and the laundry IS hidden away unfolded, and Jim may actually be doing the cooking (Marcos or Chinese). Truly the most important part of hospitality is letting others know they are welcome in your life and are valuable to you.

5 Minutes

I rode the exercise bike today. Yep, I put in a whole 5 minutes. After 1 minute, I thought hey, this isn't so bad. I hit 2.20 and wanted to give up. But I was determined to do 5 minutes. I told myself I will do 5 minutes everyday and eventually I will be back to doing 30 minutes on the elliptical. I know exercise is important especially for a Lupus and Fibromyalgia patient. The past few weeks I have been barely able to get the minimal amount work done to keep our home going.  During the weekend Jim and I went to Cincinnati for the Homeschool Conference. Lots of walking. Often I had to say, Hey Jim, I need you to slow down. He never had a problem, we just went turtle speed together.

I used to love to exercise, running, rowing, playing soccer and tennis then Lupus showed up. I was 12 when I started having arthritis in my hips, problems with fatigue, and my heart rate. Lupus was at the back of my mind, but I didn't want that diagnosis. I watched my sister suffer day after day. Lupus was this mysterious disease that was exhausting her body and damaging her organs. By the time I was a freshman, my sister had lost her battle. My body began to slow down. I couldn't wait to get into bed after soccer practice. The pain in my joints and fatigue took over. I started having fevers, my hair was falling out,  and my mouth filled with sores. A year later I was given a diagnosis of Fibromyalgia and borderline Lupus.  The next year I thought I was doing better but then during tennis conditioning  my heart began racing then dropped.  As I lay in the hospital I realized I wouldn't be playing sports for awhile.  During my senior year I was officially diagnosed with Lupus and started on Plaquanil.  I became so sensitive to UV lights I could only go to school for half day. I was determined to go to prom, unfortunately my body didn't have the same determination. I was rushed to the hospital after just a few dances. I was never able to return to school.  My lupus had officially arrived. In the next 17 years I would suffer, kidney, vascular,central nervous involvement, plus a increase in photosensitivity to all forms of UV light.

I have had remissions where I could be active almost like I didn't have Lupus. I could have a normal exercise routine, play a tennis set, kick the soccer ball around. I could out walk Jim. I have learned in the last twenty years my Lupus can slow me down but I will be back out there. I'll just need to start with 5 minutes!

Letting our children grow up takes faith, a lot of it.

One of the biggest challenges we face as parents is letting our children grow up. This often takes some letting go and a lot of faith. But there is joy in seeing our children become independent. Sunny had the opportunity this weekend to go on her first youth retreat with our church. When she brought home the papers, she was so excited, I was nervous. I have no problem with her going away, it is the the fear of what I can't do in an emergency. She is not a normal kid as much as we try to make her life normal. At first we said no because I didn't want her going without me. Unfortunately, I wouldn't be able to keep up. I spent the weekend at the homeschool conference and had to take several naps a day just to make it through two one hour sessions. I thought if I really had to I could go with her and just stay in the hotel, but then I wouldn't be very helpful. Exhaustion can set in pretty quickly, I didn't know how bad it was at the conference until I tried to go up the down escalator twice!

Taking a trip, even as a family, takes extra preparation. Gone are the days of hopping in the car and heading out of town for the afternoon. We have to have supplies, check levels and sugars, take in to consideration what and when she needs to eat. I don't really want to count how any times we have turned a 1 hour trip into a 2 hour trip. We have been very thankful for doctors who call in prescriptions late at night when we realize we have forgotten something.

I am realizing how independent she is becoming with her own care. I have sent her to Michigan and Cincinnati with friends and knew if we "trained" someone with what to do in an emergency she would be fine. I am sure Sunny is in capable hands. She is with people I trust and know would do everything to take good care of her. And here it is 11:00 pm and I have not had a single phone call. I admit I have checked to make sure I had a signal and was thankful when Jim called me to make sure my phone will ring! It seems my daughter is growing up and I can't stop her. Yep, it's time for a lot faith and some letting go.

Lupus, Diabetes, and Their Lack of Cooperation with My Plans

I had grand plans to makeover my bedroom. It really needed a makeover since I never have decorated our room. We were switching rooms to prepare for our upcoming home study. Decided the boys would need the bigger room. Elliott's room is the size of a large closet with superman blue and bright yellow walls. Nothing screams out romance like Michigan colors, unless you are huge fans. So I picked out a lovely purple that complimented the quilt I am making for Jim(not finished yet, but can almost fit the bed, whole other blog). I believed I could do this in two days. Yes, I was completely in denial. The lack of rest knocked me out for a few days, then I had another bought with whatever virus has decided to camp out in my body this past month. Needless to say, I am still working on it. Which brings us to today, I finally have some energy and decided to make progress. My lupus is cooperating, my children are off doing their schoolwork. Then it happens "the Sunny forgot to bolus and is annoyed by everyone yell." O K, take a deep breath, I tell her to take a break from her math until her sugar goes down. No, she cries, I just want to do my math. Now I know she is really high, arguing over not doing work. This is one of the reasons we home school, it gives her the flexibility to do her work when she can concentrate. Anyone who is diabetic or around diabetics understand that high blood sugar can make you unable to concentrate and irritable. A fact our daughter seems to forget when she is yelling because her brother is humming and she wants to do her work when I want her to take a break. Sometimes I wonder if she wants to work just because I tell her she doesn't have to. Hmmm, maybe I will try a little reverse psychology next time. I figure the best solution is to get her younger brother to stop. Yes, I really thought he might cooperate and not bother his sister. We have a little discussion about being supportive of her diabetes and the importance of controlling his urge to hum and sing when she is in the room. He claims he doesn't know he does it, I believe him since Jim does the same thing. In the end, Elliott escaped with a few scratches, Sunny barely has a passing grade on her assignment, and my room is going to need another day. I am READY for a nap!

Smile

When I was in elementary school a classmate asked "Why do you always smile?". I smiled but did not answer. I am not a big fan of talking. Perhaps this blog is just what the doctor ordered. Smiling was my way of dealing with illness. My mom was going through treatment for breast cancer and my sister had been diagnosed with this mysterious disease called Lupus. Our life was full of hospitals and doctor visits. My sister lost her battle with Lupus after five years. She told me I had a beautiful smile. Smiling is my way to say hang in, it will be O K. Somedays are better then others with Lupus. I call it a Lupus day. Today is one of those days. I am struggling. I do my best to smile. I guess you can call me an optimist. How much worse can it get. I have seen worse and I survived. What is a lupus day? A day when my fatigue makes every move difficult, putting my hair up because I am too weak to brush it. The pain in my hands so great I am having trouble holding a pen to write, my knees, elbows, and wrists ache and are fighting movement. When I see you I will smile, when you ask "How are you?" I will answer "good". When I am alone I will cry, I will grieve my body's unwillingness to work and keep up with the plans I have for the day. It will be a quick cry, a release. I will smile to myself remind myself I am not alone. God is with me, He will give me all the strength I need, the humility to ask for help (yes, I am still working on this). He has given me a support system of friends and family I could never have imagined. I'm blessed. So I smile. --Be strong and courageous. Do not be terrified, do not be discouraged for the Lord your God is with you wherever you go. Joshua 1:9

Permission

I will admit I am a planner.  I expect everything to work the way I want it to, when I want it to, and how I want it to. I have been educated. Life does not work that way.  I have learned it does not work in a marriage, being a mother, being a friend, or living with Lupus. Most importantly I have learned (OK honestly I have to relearn this everyday) that God is the only one who has the best plan for me. I open my heart and mind to Him, learning through His word what is best for me.  I have been studying about the Sabbath and the importance of resting. God rested on the 7th day, He set an example on the importance of resting. Resting is something I do not find easy.  When I am resting I feel lazy.  Unfortunately, with having Lupus, resting has to be a priority.  As I lay down, even when my body has given up and cannot move, I hear the tape playing in my head -- stop being lazy, there are things to be done, you are just giving in.  I am starting a new tape to play -- you have permission to rest. Yes, give yourself permission. It is OK. I am giving myself permission to rest -- to admit that I have an illness that requires rest everyday  --  to say no when my body cannot go any further -- to enjoy the time I have to rest. AND I give permission to not think about the laundry or dishes that need done -- to not feel guilty when I have to cancel plans or let my kids watch too much TV. I now have given myself permission. Starting tomorrow, I'll just need to check my schedule.

No way my kid is diabetic!!

My daughter walks into my room and says "Do you know what happened 1,825 days ago?" Math is not her favorite subject, so it has to be something important. It is. Today is the 5 year anniversary of her Type 1 Diabetes diagnosis. Yes,I remember what happened that day. We had gone to the doctor because she had started wetting the bed. She was 7, it was out of the blue. We thought she had a bladder infection. Instead we are rushed to the children's hospital a hour and half away, with a diagnosis of Type 1 Diabetes. We were terrified. We knew what life with a chronic illness is like, but know there were two of us. On the way, we prayed and sang praise to God, I told her I was scared too, but didn't want her to know how terrified I was. We are not strangers to hospitals. I go for a short vacation about every other year. Our daughter spent months in Cincinnati Children's during her first year, she would often have night terrors after visiting family who were in the hospital. Proof that our children form memories at a young age. As we walked into the hospital tightly holding hands, part of me wondered if she would have night terrors from this visit. We had a short 3 day vacation at the hospital. We learned that our life was going to drastically change. We learned about carb counts, insulin ratios, hyperglycemia, hypoglycemia, glucagon, carb free snacks (which truly don't exist), night checks, blood sugar checks, ketosis, a number of other diabetic info, and how thankful we are to have a strong willed child. She was going to need it. Before we could be released, my hubby and I had to be tested. Could we give shots? Yep. Luckily we were experienced in this area since I had to take insulin and heparin shots at times with my Lupus. Know the signs of high and low blood sugar, how to treat emergencies and sick days? Ok. We have lots of handouts and numbers to call. Do you have any idea how drastically your life will change? NO WAY. They didn't ask this question but it would have been a good one. After 5 years this is our normal. We can answer those questions with flying colors and probably share some tricks we have learned. Looking back at our daughter's health, we see the signs of Type 1 Diabetes a year before her diagnosis. Week after week of "viruses", fits after going to holiday dinners or birthday parties, pain in her legs, heart racing, headaches, hunger - these were all signs of high or low blood sugar. Today we can look at her face, listen to her attitude change and know she is high or low. What is the hardest to deal with in our normal? It is the fear of making a mistake. Her insulin pump is her life line. Too much, she could die. Too little, go into a coma. How often I sneak upstairs to make sure she is still with us, as if she were still an infant. Knowing that what worked today may not work tomorrow. What is the blessings with our normal? We are blessed by God through this struggle. We have learned to stand as a family. I am encouraged to fight my own illness, when I see this beautiful young lady fight hers. I see her growing in faith and God working in her life; that is a blessing.

Why not!?

As I lay here in bed on another beautiful day, I begin to entertain the thought of writing a blog. I have always enjoyed writing. So why not share "our normal" with the world. We are often asked how do you guys do it, or I couldn't survive what you go through each day. The truth is it is normal for us and each day we don't know how we survive. That is purely a gift from God. So why am I in bed with the drapes drawn on a perfectly sunny day, when I would rather be out tending my flower beds or playing with my kids. I am a Systemic Lupus patient. I have been for 20 years. In the past few years, I have become severely sensitive to the sun. It is part of my lupus so it is part of me. It will not controll all of me. I live a very full life, sometimes like today from my bed, for this I give God praise! Lupus is just part of what is normal for us!