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!