Our Grand Adventure - Day 1 - Getting Off On the Wrong Foot

Today was day one of Our Grand Adventure.  To explain how and why we got off on the wrong foot, I have to go back to earlier in the week.

• On Monday, I took Angelica to see Dr.H and he determined that yes, in fact, her right foot is broken.  She had injured it two weeks prior while in El Salvador.  


• Then on Tuesday, I woke up with the worst migraine I have had in almost a year.  It was so bad that I could barely hold my head up.  The migraine finally broke at around 7:30 but because of the migraine, nothing much was accomplished on Tuesday.  


• Wednesday was a day full of appointments and phone calls between the pharmacy, the insurance company, myself, and the doctor trying to get prescriptions filled.  That was a nightmare, but I was finally (after a week of back and forth) able to get all but one of my prescriptions filled.  

So, this morning when we awoke, instead of getting on our way, we had to finish packing.  Then came the fun part of trying to get everything in the trunk.  I don't think I would have succeeded if my friend Natalie hadn't stopped by when she did.  She helped solve the puzzle of where to put things, drew me a map for future reference, and we headed on our way... 5 HOURS LATE!!

The first stop on Our Grand Adventure was to meet Amy from Great Cakes Soapworks.  She has been so sweet to me, helping me to find soaps and creams that Angelica can use, and always alerting me when new soaps that Angelica can use become available.  I had been hoping to be able to meet her for quite some time and am glad to have had the opportunity.  

Then we headed on our way again.  The original plan was to camp each night on our way but since we got started so late, that didn't work today so instead I drove well into the night and finally stopped at a hotel just east of St. Louis.  We are all tired and a bit emotional, but looking forward to the days ahead. 

Happy 18th Birthday, Miracle!

Happy Birthday! I am so proud to be your mom. You are an amazing young lady! I am excited to see what God has in store for your life! I love you!

Guess Who Got Her License!!

Congratulations Angelica!  I am so proud of you.  You are growing up and becoming an amazing young lady!

Needed Reminders

Psalm 138

¹ I will praise you, Lord, with all my heart;
    before the “gods” I will sing your praise.
² I will bow down toward your holy temple
    and will praise your name
    for your unfailing love and your faithfulness,
for you have so exalted your solemn decree
    that it surpasses your fame.
³ When I called, you answered me;
    you greatly emboldened me.

⁴ May all the kings of the earth praise you, Lord,
    when they hear what you have decreed.
⁵ May they sing of the ways of the Lord,
    for the glory of the Lord is great.

⁶ Though the Lord is exalted, he looks kindly on the lowly;
    though lofty, he sees them from afar.
⁷ Though I walk in the midst of trouble,
    you preserve my life.
You stretch out your hand against the anger of my foes;
    with your right hand you save me.
⁸ The Lord will vindicate me;
    your love, Lord, endures forever—
    do not abandon the works of your hands.

And this gem from a friend.... Regardless of the decision I make, God will take care of me!

Living With Lupus

There are so many things I could say... so many ways I could restart blogging again and yet I hesitate to blog after so long of a hiatus. However, I had promised myself that I would post about Lupus during May since it is Lupus awareness month. 

Lupus, although more common than cerebral palsy, multiple sclerosis, sickle-cell anemia and cystic fibrosis combined, is often something that people haven't heard of. There are two main types of Lupus: Cutaneous Lupus and Systemic Lupus. Cutaneous Lupus is confined to the skin and Systemic Lupus attacks the whole body. 

 I have Systemic Lupus. A lot of people assume that an autoimmune disorder is like being immune compromised. The opposite is actually true. My immune system works over-time. It not only attacks the viruses and infections that I am exposed to, it attacks my own body as well. It has ceased being able to distinguish between the two. In fact, the lupus is so busy attacking my body that it lacks the energy to attack viruses and bacteria. As a result, I get sick more often than the average person and I stay sick longer. 

People with Lupus often talk about having a "flare" and I have realized not everyone knows what that is. A flare means that some system in my body is being attacked by my immune system. It always attacks my skin. I live with hives even though I have no allergies. It sometimes attacks organs such as kidneys. I have had more kidney infections in the last year than most people have in their lifetime. A flare also means decreased energy and cognitive function.  I am more easily confused when I am having a flare and I live exhausted.  

 Sunlight is my enemy. Really. If I am exposed to sunlight, the flares become worse. Specifically, I get more hives, I am more prone to infection, and the lupus more vigorously attacks various body systems. Even the tiniest amount of sunlight, such as driving from one place to another with only my hands and face exposed, can cause a flare. Sitting on my couch with the blinds open is sometimes too much sunlight. There are a lot of things I can do to minimize sun exposure such as wearing long sleeves and pants all year, wearing a hat while outside, and standing in the shade; but it is impossible to avoid the sun altogether. Also, my body reacts to interior uv lights as well. That means if I am at an arena or brightly lit mall I am just as likely to have a flare as if I am at the park.

Living with Lupus means being tired all the time.  It also means having a lot of doctors and a lot of appointments.  I have a pcp, a rheumatologist, and a pulmonologist.  That's it for now.  It also means that I take a lot of meds.  Some to control symptoms, some to slow the progression of the disease, and some to manage flares as they occur.  One of the meds puts my eyes at risk and I therefore have to see an opthamologist yearly to make sure I'm not in the early stages of blindness.  I am on antibiotics frequently.  

Some days are better than others.  In fact, some days I can almost forget that I have a progressively debilitating auto-immune disease.  Some days I can barely get out of bed.  Some days it is all I can do to hold my tongue when someone minimizes what I am going through simply because they cannot understand what they cannot see or have not experienced.  

Computer Trouble

Hello all!  I may not be posting anything with pictures for a while.  My computer is sick and so am I so I don't have the energy to figure it out right now.  Happy New Year!

Outside Christmas Lights

Today's theme is "nighttime" but I am choosing to do one I missed on the 16th  - "outside Christmas lights."

Since we live in an apartment, hanging outside lights isn't an option, but driving around to look at outside displays that others have created has always been one of my favorite things to do during the Christmas season.  Below is a picture of one that I thought was pretty on our way home this evening.