Monday, April 30, 2012


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.

Tuesday, April 24, 2012

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!

Saturday, April 21, 2012

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.

Tuesday, April 17, 2012

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!

Saturday, April 14, 2012


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

Friday, April 13, 2012


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.

Thursday, April 12, 2012

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!