A Re-Introduction

The girls are old enough that I think they can begin to manage their online presence - with real names.  Both girls have shown extreme maturity and understanding of the risks associated with being online as well as a knowledge of how careful they must be with what they post given the permanence of the Internet.  So, with that said, I have decided to truly introduce my girls to you all here.   

Miracle, aka Butterfly, is full of love and life.  She is generous and compassionate.  She loves art and cooking and hopes to combine the two in a cake decorating business in the near future. Right now she is in the learning phase.  She has a sense of fashion all her own and finding that gave her a confidence that I hadn't seen since she was small.  She is smart although she doesn't believe that.  She has come a long way since her brain injury in 2008.  I posted a more detailed update on Miracle's progress since the TBI here.  She will be 17 in less than a month.  That hasn't sunk in for me yet, but it will.  My little girl is rapidly becoming a young lady.  

Angelica, aka FigNewTon, has changed dramatically since I initially introduced her here and yet she is much the same.  She has traded figure skating for dancing.  She is still a thinker and a dreamer.  She takes her time - with everything.  She loves people and believes everyone likes her and the few that she realizes don't like her don't seem to matter to her.  She counts everyone she meets as a friend.  She is confident and comfortable being herself.  She knows who she is and where she is going.  She plans to be an interpreter for the deaf when she finishes college and is already on a path to take her in that direction.  

Living with Lupus

June of 2010, I became really sick overnight.  As a result of that, I saw multiple doctors who ran many tests to find the problem.  In the end, we learned two things.  One, I had an internal bleed and needed surgery to correct the problem.  That was what caused the overnight symptoms and was easily corrected that fall.  Two, I have an autoimmune disease.  It took another 1 1/2 years for the doctors to determine that I am living with lupus.  There are a lot of things that can go wrong and I choose not to learn how bad it might become.  Instead, I manage symptoms as they come.  I thought it might be good to outline what living with lupus can be like. 

I wake up in the morning and take stock; figuring out how much pain and how much energy I will have that day.  I take it slow simply because going fast robs me of strength to face things that may come up later in the day. 

I also assess how healthy I am.  Most days, I have some type of infection that my body is fighting.  When that is the case, I have to be even more careful about conserving energy.  I just finished my second course of antibiotics for a sinus infection that is still lingering and trying to invade my lungs.  I must take it easy to hopefully prevent that from happening.  Even so, I may still get sicker.  If I have a fever, I must rest more and dress warmer. 

I am on a medicine that is slowing the progression of the lupus.  I have been since January.  It helps.  Eating breakfast has become a necessity. The medicine that I take makes me very sick if I don't.   Eating a snack before bed is also required. 

I have the tell-tale rash on my face.  Make-up doesn't begin to cover it.  Glasses hide it a bit.  Usually though, I just live with the red butterfly gracing my face. 

I have developed a sensitivity to the sun.  I break out in a very annoying rash when exposed to sunlight.  So, I wear long sleeves and pants no matter the weather and my usually light complexion is becoming even paler. 

Pain is constant.  We haven't found a pain medication that I can use.  I have had a lifelong allergy to Tylenol.  Ibuprofen and Aleve don't touch the pain.  Some medicines give me high blood pressure while others make me groggy.  So, I am learning to manage the pain.  Some days this is easier than others.  I rely heavily on warm packs that we made at home.  My girls tease me some days because I don't use the microwave for food but I will probably always own one for my warm packs. 

So, after a thorough assessment, I then determine what I can do each day.  The girls take priority.  Whatever they need is what my energy gets spent on.  Butterfly is a very good cook and she enjoys it most days.  She knows that cooking saps the remainder of strength I have in the evenings.  For those reasons, she often chooses to cook our dinner. 

The simplest activity can sap me of energy.  On bad days, I must rest after getting dressed in the mornings.    

I can save energy for an important event.  This usually works to a large degree.  If I have several low key days in a row, we can do something like go to the zoo with only minimal risk that I will become sick in the days following. 

There is also the option of borrowing against tomorrow's energy.  This is a risky proposition, though sometimes necessary.  If I borrow too much energy, I don't have the strength to even get out of bed.  Or I risk developing a cluster of infections and staying sick for months.  In the fall, when Butterfly was hospitalized, that happened.  Two days into her last hospitalization, I became sick with a cold that turned into pneumonia and was followed by four months of infection culminating with shingles. 

That brings up another point.  I get illnesses that are not common for someone my age.  Shingles.  Thrush.  And I get infections that I should have developed an immunity to. 

My kidneys are weak.  I get many more kidney infections than the average person.  When they did surgery in November 2010, they biopsied my kidneys and they were already showing signs of early disease.  For now they are functioning and for that I am thankful. 

I have a migraine today and I feel like this post is disjointed, but I didn't want to wait any longer to post it.  I wanted to record what living with lupus is like for me now.  I wanted an explanation for my sometimes long absences here. 

The Cry of My Heart

Life has thrown us a few curves over the past several months.  I keep thinking I will post and then something else demands my attention.  There have been so many significant events in our lives the last little while and each one deserves its own post and explanation.  I will get to that eventually.  For now, I am going to leave you with some songs that are the cry of my heart.  May God bless you and hold you close as you seek to honor Him my friends.  

Things I Am Thankful For Today

I am thankful for a pediatrician that cares.  Yesterday, while FigNewTon was having a recheck for some problems she has been having, I hear him in the hallway saying to a nurse, "NO!  May 17 is not OK.  You call him back and tell him he has time to see her today."  

I am also thankful for the friendship and trust that the pedi and cardiologist have with each other because when we get to the cardi he shows up in full surgery gear and says, "I have not had time to read the notes and I honestly have no idea why Bernie felt it necessary that you be seen today so could you tell me why you think you are here."  He then proceeded to run a few simple tests and reassure me that  FigNewTon  is not going to die unexpectedly in the next few weeks while we figure out what is going on.  

I am thankful that Butterfly's neurologist was willing to reschedule her appointment for yesterday afternoon with no charge even though I cancelled at the last minute to take FigNewTon to the cardi.  

As always, I am thankful for the daily blessings God gives like shelter and food as well as the comforts we so easily become accustomed to.  

I am thankful that He guides me in daily life and carries me when I have no strength.  

I am thankful for friends that understand when life gets hard and I begin to hibernate; those that are there when I return and those that reach out to keep me going when I don't have the frame of mind to stay connected.  I need both kinds of friends and I am thankful that God has gifted me with them all.  

I am thankful for freecycle and garage sale sites that make it easy for me to get rid of excess stuff.  I am thankful that I am not attached to my things and can so easily get rid of them.  

What about you?  What blessings are you thankful for today?

Joslyn Museum

Yesterday we got together with a few other homeschool students and went to the Joslyn Museum for a field trip.   

There was a new outdoor area with sculptures that invited interaction.   

Before long it was time to head into the museum. 

Once inside, we gathered for a guided tour to learn about Egyptian tombs.  

Then we were off to explore on our own.

Allergies

As FigNewTon stated on her blog about a month ago, she has been diagnosed with a lot of allergies. I had a similar emotional reaction to the news at first.   My reaction was more one of relief, though, because we finally had an answer to the blisters on her arms and face that looked more like acid burns.  Then, I responded more practically.  What exactly is she allergic to?  Although it feels a bit like everything, the list is in fact quite short.  

She is allergic to nickel and cobalt, both metals commonly found in... well.... everything; more specifically  jewelry, snaps, buttons, buckles, zippers, tools, utensils, instruments, machinery parts, vitamin B12, hair dyes, cosmetics, pottery, glass, crayons, joint replacements, dental appliances, shell splinters, cement, paint, resins, printing inks, tattoos, welding rods, electroplating, animal feed, tires, coins, keys, eyeglasses, hairpins, purse latches, eyelash curlers, metal cutting fluids, coolants, orthopedic plates, screws needles, and metal alloys.  Like I said... everything.  Metal alloys?  That is anything that is made of metal really.  The cans that food come in, even organic foods, contain metal alloys.  Flatware.  Some of these things she will never come into contact with.  Some things, like dental appliances, we can't avoid.  We are working on getting her contacts.  It is a fight with the insurance company to prove that it is a medical necessity.  Vitamin B12 is very difficult to avoid.  Jewelry we had already figured out. It has a simple solution.  She doesn't wear any.  Snaps, buttons, buckles, zippers are a bit more difficult to avoid but we are learning how to find clothes that don't agitate her skin.  It is definately a learning process.  

She is also allergic to sorbitan, a preservative.  I thought this one would be easy since we don't eat very many foods from a box.  However, the only yeast we can buy is individual packets of red star.  The jar has sorbitan.  The off brands have sorbitan.  

And then there is the compositae mix.  This includes artichoke, burdock, coneflower, chrysanthemum, camomile, dahlia, daisy, dandelion, elecampane, fleabane, feverfew, gaillardia, goldenrod, marigold, ragweed, sunflower, sneezeweed, sesquiterpene lactones, tickseed, tansy, and yarrow.  She was quite happy about the artichoke since she thinks they are gross.  Camomile on the other hand is one of her favorite flavors and scents.  Dandelion leaves?  A delicious addition to salad in the summer.  Sunflower?  She used to put the seeds on her salads as well.  This list becomes even more complicated to avoid.  Something on this list is in almost every hygiene and cleaning product on the market.  In fact, there are quite a few things that I am having to learn to make at home.  Amy, of Great Cakes Soapworks, has been a great help.  She went through her products to let me know which ones don't have sunflower oil in them and recently has made a few more soaps without it.  Our dish soap uses her clarifying facial soap as a base.  I'll let you know how that works out in another post.  It is making right now.  

Some things we were able to eliminate from her life immediately.  There are some things that we just had to run out of.  I feel bad about that since FigNewTon's skin hasn't completely cleared up yet, but I couldn't just throw away a new bottle of detergent and since we go to the laundromat, I can't do her laundry separate either.  

Fine Arts Festival 2012

The district fine arts festival for Nebraska Assembly of God churches was this past weekend.  My girls participated in a lot and did quite well overall.  

Butterfly did a human video solo.

The girls did a dance together.

Butterfly preached a short sermon.

FigNewTon did an ASL solo.

FigNewTon did a solo dance.

Butterfly did a solo dance as well.  We are having some difficulty downloading the video to our computer and also having difficulty obtaining copyright permission to post it on youtube, so a picture is all you get.  

FigNewTon wrote a short story that she posted on our homeschool blog. 

The girls worked together on a children's book.  FigNewTon wrote the story and Butterfly illustrated the book.

 FigNewTon designed this t-shirt. 

Butterfly designed this t-shirt.

 

Butterfly did 2-D art.

Butterfly did 3-D art.

Butterfly entered a digital photograph.  The story behind the photo is amazing. 

Overall, it was an amazing experience again this year.  A friend from church went with us which made the day go smoother and helped to keep me from getting overtired.  

FigNewTon received an invitation to nationals for her short story and ASL solo.  Butterfly received an invitation to nationals for her short sermon.  Together they received an invitation to nationals for the children's book.  

Louisville here we come!!