Our Grand Adventure - Days 9 - 13

Day 9 - We woke up bright and early, had a good breakfast, and headed on our way.  Our first stop was in Lawrenceville to meet one of our soap providers, Linda and Ed from lyesoap.com, and pick up some soap.  We also had the opportunity to visit a bit and learn about the soap making process.  Angelica is quite interested in the whole process.  Then we continued driving, and driving, and driving... until 7:30 when we finally arrived at our campsite in Fort Clinch, Florida.  We set up our tent, partially in the daylight and partially in the dark, but not until we were warned to avoid the bobcats, alligators, and overly aggressive raccoons!!  We showered and settled down for the night, knowing we had an early morning ahead of us.  

Day 10 - We set an alarm for 5:00 am so that we could watch the sunrise over the Atlantic Ocean.  It was truly remarkable.  Miracle and I were quite tired so we went back to the campsite and napped a bit before tearing down the tent.  As soon as that was done, we went to the beach to enjoy some time playing in the ocean.  Miracle struggled to push me in a beach wheelchair.  I struggled to let her, knowing that if I didn't, I wouldn't be strong enough to handle the rest of the trip.  When we had spent enough time in the waves and gathered our fair share of shells, we headed to Orlando.  We arrived at an amazing resort that we have the opportunity of spending two weeks in thanks to the generosity of a friend.  We got settled into our suite and headed to bed, anticipating the next day's adventure.

Day 11 - We headed out early to Blizzard Beach, but it seemed like things kept slowing us down so we didn't arrive at the park until 10:30.  I traded my wheelchair for one of theirs so that the water wouldn't ruin mine.  We enjoyed the day thoroughly, much more than anticipated.  

We also became more aware of people's misconceptions about wheelchair accessibility.  There are truly only two rides that are completely accessible.  There are a few more that are moderately accessible, mostly because the staff are so accommodating and go out of their way to make the Disney experience enjoyable for everyone.  People wrongly assumed that we went to the front of the line when often we had to wait longer for things that were accessible, like the gondola necessary to transport wheelchairs to the top of the mountain.  We learned firsthand that a route that is accessible to wheelchairs often covers more distance and time than the more direct route designed for everyone else.  Enough of the rant.  

Day 12 - The first day of Nationals - we slept in a bit before heading to the Convention Center and registering the girls for the festival and turning in their artwork.  Miracle entered three categories: Short Sermon, 3-D art, and Digital Photography.  Angelica entered Digital Photography.  

We were all tired, so we headed back to the resort and napped again.  Once we awoke, we had a quick lunch and headed to Downtown Disney.  We weren't sure what to expect.  We had a lot of fun looking through the shops.  We are looking forward to returning later to spend one of our tickets at Disney Quest.  

Day 13 - We were up bright and early to head to the Convention Center.  Miracle was scheduled to preach at 10:24.  When we arrived, we looked through the artwork to make sure the girls' artwork was set up properly.  Once we were satisfied that it was, we looked around the exhibit hall for a little while and headed to the room where Miracle was scheduled to preach - she got a Superior and is anxiously awaiting news of whether or not she will receive a call-back.  After that, we headed back to the exhibit hall for the rest of the day.  We all got henna tattoos and the girls participated in a scavenger hunt with a college Miracle is looking at.  All in all, it was a good day.  

Plus, I got a bit more of a perspective of life in a wheelchair in public... kids are on my level and talk to me freely, struggling people are more willing to share their struggles - possibly because it is obvious that I have struggles of my own, and it provides a great angle for photographs!  

We were finally at the resort early enough to have some time to relax and wind down before falling into bed. We grilled our dinner and ate outside.  Then we sorted through the day's finds and cuddled on the couch for a bit before the girls headed off to bed.  

I had hoped to blog more consistently while we were here with the Internet access but have been so tired that hasn't happened.  I have to learn to listen to my body and slow down so that I don't get too sick and going to bed rather than blogging is part of that. 

Our Grand Adventure - Days 2-8

Day 2 I spent driving.  And puking.  And puking while driving.  Not fun...

Angelica spent the day riding and sleeping.  She had me a bit concerned with the constant fever and fatigue until I realized that the timing was perfect for her to be displaying symptoms of mono since her sister was sick with it back in April.

Miracle spent the day riding, reading, drawing, and playing on an iPod.

We arrived at the campsite shortly before 10 and had the adventure of putting up the tent in the dark.  I didn't mind so much, but the girls have said it is an experience they would rather not do again.

Day 3 We tore down the tent (2 hours including breakfast and such) and drove for a few hours to set it up again at Tallulah Gorge.  We picked up the groceries we needed and headed back to the campground to fix dinner.  Starting the fire was a challenge.  Even the Girl Scout training that I had received to place the wood in a tent shape didn't work.  A neighboring camper took pity on us after about an hour and brought a fire starter over.  He then told us that the humidity is so high in GA right now that traditional methods of starting a fire just don't work so the next day we bought some fire starters and charcoal to make building fires the rest of the week easier.

Day 4  In addition to going to the store, we went swimming at the lake and we explored the visitor center.  We were bummed that because of Angelica's foot we couldn't hike the gorge, but maybe we'll get to in the future.

Day 5 We broke out the wheelchair for me and hiked a few of the trails that were accessible.  We saw so many beautiful things and Miracle and I waded in the river for a few minutes.  Then we went back to the campsite for lunch and a quick change of clothes so that we could go swimming again.  Then we went to wade in the river again.  This time Angelica joined us.

Day 6 We headed to Greenville to visit a childhood friend.  I enjoyed the visit and was excited to meet her children.  Before leaving, she helped us pick out a swimsuit for Angelica as she had had two swimsuit malfunctions since arriving in GA.  As we were driving home, I realized I hadn't gotten a single picture.  On the way, we stopped at an overlook and saw the gorge from a different angle.  We were more determined than ever to make that trek in the future.  It is a beautiful sight to see. While Angelica and I cleaned up dinner, Miracle sketched a piece of charred wood from the fire.

Day 7 We headed to Winder to visit my sister and her family.  We spent the day at the retirement community that they all work at.  It seemed that we were chatting with one of them all day one on one as they took breaks between tasks.  I know we distracted them from their tasks and hope that they didn't have to spend too much time catching up the next day.  After the days' tasks were done, Cheryl grilled dinner before we headed home.  Once again, I realized I had been so busy chatting that I had forgotten to take a single picture.

Day 8  We headed into town early to eat so that Miracle could have wifi access and get some Mary Kay banking done.  Then we headed back to the campsite to tear down (1 1/2 hours) before joining J&BA for dinner and a restful evening before sleeping in a comfy bed, hopefully to be refreshed and ready for the upcoming adventures.

*I'm taking most pictures with the camera and won't be able to download them until we return home.  :)

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.