How I lost my chance at a free laptop

Anytime the Baldwins post a prayer request on Facebook, everyone automatically assumes it's Dad. (With good reason.  He's in the hospital so much that last year at school, a student told me he knows where I live because I live in his neighborhood in the house with all the ambulances.)  Anyways, Dad asked for prayers last week for a prayer request that was for me. We've kind of shared a little bit, but I figured I'd dust off my blogging skills and tell y'all a little more about what's going on.

We have a very thorough doctor. If he sees something suspicious, he's going to dig and dig until he figures out why the suspicious thing is happening. Because of my family medical history, and my health issues, I have to have lab work completed every three months ago he can ready stay on top of potential problems. On September 4, I went in for my quarterly visit. He noticed that my liver enzymes were high. They've been high before. When I lived in Oklahoma, I had to have an ultrasound and was told I had fatty liver. Really common.  Well, my doctor here wanted more information. The numbers kind of jumped up and down, and he wanted a clear picture, so he ordered additional blood tests and another ultrasound. This new round of blood tests included tests for hepatitis and for various autoimmune diseases. My half day off work became a full day as I went where I needed to go to take career of the extra tests.  His nurse called me Friday night to tell me there was an abnormality in my mitochondrial results, and I needed to schedule an appointment with a gastroenterologist. (Side note, she should have said antimitochondrial results, because googling mitochondrial diseases was real scary, and made for a very long weekend of wondering and worrying.) ((And yes, I know you shouldn't google medical conditions, but literally all the nurse told me was the aforementioned blood results and I had to know SOMETHING!!))

Anyways, I saw the GI specialist yesterday (9/10). I left feeling still kind of worried, but so much better than I did over the weekend. He gave me some good information, a probable diagnosis, and a promising prognosis.

I'll be honest. I don't know much about autoimmune diseases. I know they mean a person's immune system is attacking their body. I know I can list 5 of them of the top of my head (lupus, type 1 diabetes, crohn's, multiple sclerosis, rheumatoid arthritis). I could maybe come up with one or two more if I was really pressed to think about it.  But seriously, that's as far as my knowledge went.

I didn't know there are over 100 different autoimmune diseases, and I didn't know that some of them are pretty rare.  Yesterday, I was suddenly very interested in finding out all about autoimmune diseases when the doctor told me he thinks I have Primary Biliary Cholangitis. It's one of the relatively rare ones--1 in 4000. 65 in 100,000 women. 90% of patients with PBC are women. There is no apparent cause. It had not been linked specifically to any hereditary causes (although it is suspected as it does seem to show up in multiple family members).  It generally appears between the ages of 35-65 (I'm an overachiever).
What is it? It's an autoimmune disease that affects the liver. The antimitochondrial antibodies are attacking the cells and organs in the body. In this case, they are causing inflammation and scarring in the liver, which in turn causes damage to the bile ducts. When the ducts are damaged, thea liver backs up which eventually leads to cirrhosis.

In fact, it was formerly called primary biliary cirrhosis, and frankly, that's just the scary icing on top of the frightening diagnosis cupcake. Because what I know of cirrhosis is definitely not good. I know cirrhosis is an end-stage disease. I know that it has several causes, but let's be real, it's not the cause that's so terrifying it's the effect. It brings to mind words like transplant and organ failure. (I promise I'm not going to be Negative Nellie this whole post, just getting it all out there.)

So, what does that mean for me?  While he pretty sure it's PBC, the gastroenterologist saw some inconsistencies in my lab work, so he will not give a 100% certain diagnosis...yet. First, I have to have a liver biopsy. (Think giant needle going in and pulling pieces of me out.)  If the biopsy confirms the diagnosis, we start a treatment plan. PBC isn't curable, BUT it is very treatable with medication. In fact, the medications have advanced so much in recent years that many patients with PBC never reach the cirrhosis stage of the disease. And there earlier you catch it as start treatment, the better the prognosis. There are some symptoms of the PBC that are present. I don't generally feel bad, they are more just annoying. I mean, who knew itching could be a result of liver disease. Seriously, you can't imagine how itchy I get. I thought I was having allergic reactions to laundry detergent or fabric softener.  Doctors (and some family nurses) have asked if I'm vomiting. The stomach issues are there, just not in the form of vomiting. I think I'll just leave it at that. They also say fatigue is part of this, but I've been tired my whole life, so who knows if that's actually a result of this potential PBC. (Plus, here I am, blogging at midnight.) Haha!! 

The last 9 days have been crazy and stressful and a roller coaster of thoughts and emotions. I'm waiting on a call from the hospital to schedule my biopsy, then I will see the gastroenterologist again in about a month to follow up on the biopsy and get a treatment plan.

Thank you to those who have been praying and we welcome the prayers of anyone hearing about this for the first time.

Also, if you wanna know how I'm doing...
Right now, I'm more upset that all these appointments are taking me out of the good attendance drawing for great free stuff at work than I am about the reason for all the appointments. I know God has got his part under control no matter the diagnosis, but I really wanted that laptop.  My feelings may be different though, when I'm facing the procedure with the giant needle. That'll be my first time in the hospital as a patient since I was born. Plus, I hate needles. (Insert full-body shudder, here.)

Dad

Many of you by now have heard snippets or maybe even details about Dad being in the hospital this week.  We always try to refrain from doing a huge Facebook post until we have at least a little bit of an idea of what is going on.  It's going to be a long one, so I came here, instead.


In my last post, I talked about the reasons I was moving home, and one of the bigger reasons was that Kingfisher, no matter how much I loved the school and the people, was just too far away when something is happening with my family.  The last 37 hours have definitely confirmed that decision.


Our Sunday routine is pretty static--church, lunch, naps. Very rarely do we deviate from that "master plan."  This past Sunday, Dad stepped out of church during the invitation, but I didn't think much of it.  He is an usher and has various other responsibilities on Sunday mornings, so anything could have pulled him out of the service.  I was helping Mom clean the nursery after church when I got a text from Dad saying "Im going home not hungry take your mom"  He was deviating from the master plan, big time.  Of course, Mom's wifey senses were on high alert, and we went home to check on Dad before going to lunch.


Mom's instincts were spot on.  We found dad in bed, struggling to breathe, unable to speak, and unable to move.  It quickly became apparent that we needed to call 911.  The paramedics found Dad's blood pressure was extraordinarily high, but that didn't necessarily explain all his symptoms, so the decision was made to take him to the hospital.  He was admitted into the ER under Code Stroke.


Dad presented with all the typical signs of stroke.  Difficulty with speech, weakness in his arms and legs on the left side of his body, and facial droop.  However, CT scans came back negative for stroke, so he was sent for an MRI to take a more detailed picture.  Sometime between the CT scan and the MRI, he started having trouble with choking on his saliva.  A swallow test was performed and he couldn't failed at the very beginning with liquids.  No eating or drinking until a consult with a Speech Language Pathologist (SLP)...who doesn't work on Sundays.  He was admitted following the MRI, and we awaited results.


MRI results were also negative for a stroke.  Once in his room, his nurse (who is amazing, by the way), said that we were probably dealing with Transient Ischemic Attack (TIA) which is also known as a mini stroke.  I wasn't super clear on the difference between a mini stroke and the real deal, but the amazing nurse explained.  A mini stroke has all the symptoms of stroke, but they will typically go away on their own within a a few days.

This morning we started early with a visit from the neurologist.  She did several bedside tests and agreed that while this isn't testing as a stroke, it's very likely TIA.  We would have to see how he improved to determine if more testing would be necessary.  (We'll find out tomorrow if he needs another MRI.)  During her evaluation, Dad was able to raise his left arm higher than he has since this event started, the same with his leg.  With Dad, anytime he has some major health event, there is always something that "stumps" the medical professionals.  In this case, it is Dad's difficulty with speech combined with weakness on the left side of his body.  Those two functions are handled by different sides of the brain, so they are usually not experienced together.  Speech difficulty usually accompanies right side weakness.

After the neurologist, we met the Physical Therapist.  She made Dad sit on the side of the bed on his own, put on his special hospital socks by himself, walk him down the hall (with a gait belt and a walker), and sit up in a chair for a few hours.  My Nanny and I noticed improvements just during that short little trip.  Her goal is for him to walk out of there on his own.

Around noon (that's 28 hours since dad has had anything to eat or drink), the speech pathologist arrived to evaluate and complete a second swallow test.  She also is commented on the oddity of his speech and his left side.  He failed the second swallow test, so scheduled a Modified Barium Swallow Study (MBSS).  This is basically a swallow study that involves a "moving x-ray" that allowed the SLP to make sure when Dad swallowed nothing was getting into his lungs.  He passed the MBSS, and was finally allowed to have some water around 3pm.

The occupational therapist (deals with fine motor skills) came while most of us were at lunch.  She also agreed with the probable TIA diagnosis.  I'm not sure what all else happened with her visit, as I wasn't there.

Dad got to eat supper!  A full 33 hours after his last meal.  The most exciting part is that he was able to eat the entire meal without choking.  A major improvement from the previous day, when he couldn't even swallow his own saliva.   Praise the Lord!

The last part of the medical team who we saw today was a sonographer who performed an echocardiogram and a doppler on his throat.  We will find out tomorrow from his cardiologist what the results of that are.

Dad has made major improvements in the last 37 hours, but he still has a long way to go.  He is very determined, and keeps telling us that he is trying hard.

We definitely appreciate all the prayers, texts, calls, and visits.  There is a peace of mind in knowing that we are surrounded by so much love and prayer.

Thank you to all the therapists I've worked with for the last 5 years.  You've provided me with knowledge that helps me to understand what the PT, OT, and SLP are doing and saying, helping my family understand as well.  That little bit of knowledge I have gleaned from you has proven invaluable to me this week.

We are also so appreciative of the staff at Medical City of Denton.  The entire medical team has been amazing, and just prove why my Dad keeps coming back.

Keep watching Facebook for more updates, and keep those prayers coming!

Hello Again

Hi, there!

It's been a little while since even I have visited my blog.  Does anyone still read them?  I'm not sure, but this has always been a place where I can come and just get out what's on my mind.  So here I am, three years later.

It's been a crazy three years.  Since my last post in February of 2014, a lot has changed.  The camp where my family lived and worked for 15 years was closed, which motivated my parents to make the move back to Texas closer to family.  However, the move closer to family took them farther from me.  I stayed in Oklahoma.  I loved my job and things would just play out better if I stuck around a little longer.  So, in the summer of 2014, I packed up all my belongings, put them in storage, and took a trip to Canada to spend time with my best friend before she got married.  When I came back stateside, my family all lived in Texas, and I was homeless.

I moved into a tiny house just days before I began my third year of teaching special education in Kingfisher.  Did I mention I love my job?  I work in a classroom that intimidates most people.  We deal with things on a daily basis that would make the average person a bit (maybe a lot) queasy.  But you see, the biggest struggle leads to the biggest reward.  Working with these kids has been the most rewarding experience of my life.  I wouldn't trade the last five years for anything.

I'm getting ahead of myself.  During the three years that Mom and Dad have been hours away, some big things have happened.  In September of 2014, Dad had a massive heart attack.  I was three hours away getting texts and calls from Mom and Josh, and falling apart because I couldn't be there.  I was stuck in Kingfisher, with pneumonia by the way.  They decided to do open heart surgery, and I took my sick self on a three hour road trip to Texas.  Dad had a quadruple bypass, and came through it like a champ.

In August of 2015 (the day before school started), Dad had another huge medical event.  I will do a post about that soon, because our God is a God of miracles and everyone needs to read that story.  Needless to say, they did not expect my dad to survive, and brought the family in to say their good-byes.  While the family was preparing for the worst, I was making a 4-hour drive to Plano to try and make it to where they were.  Thankfully, things did not play out the way the doctors expected, and dad came through it again.  Later that same week, my great-grandmother passed away.

Fast forward to this year.  In November, my mom's stepdad, the man who raised her, my Papa Grouch, passed away unexpectedly.  In February, my last remaining great-grandparent, my Papa G, also went to heaven.

All of these things have made me realize one very important thing.  I want to be closer to my family.  The distance did not seem so big in 2014 when I moved into my tiny house and prepared to make it completely on my own for the first time in my life.  But the distance seems far greater when you are racing to get to a hospital "in time."

This has led to one of the hardest decisions I have made in some time.  This week, I turned in my resignation letter to Kingfisher Public Schools.  There is a lot of controversy surrounding the education system in Oklahoma, right now. So, I'm going to make one thing very clear. I am NOT leaving Oklahoma because of my salary.  This does not mean I'm happy with my salary. Oklahoma teachers are woefully underpaid and something needs to be done, but that's not why I'm leaving.

I've said it twice already.  I love my job.  I hate the paperwork that seems to be ever-increasing and I hate the politics involved in education.  I love my students. I love the people I work with.  I love knowing that I am making a difference.  The staff and students I work with have become my second family, when my real family is so far away.  I was emotional when I turned my letter into my principal; I was emotional when I sat at home that night thinking about it; I was emotional the next morning when I saw that my position had been posted for the next school year.  I don't think it's going to get better as we get closer to the end of the year, and I have to say goodbye to these people who have been such a huge part of my world for the last five years.  I'm not looking forward to saying goodbye.  I'm not looking forward to the change of a new school, new colleagues, and new students.  (Nevermind a new state with new laws.)  In spite of all that, I have complete peace that this is the right decision for this time in my life.

So, I'm facing a lot of changes, and I'm not great with changes.  When I pulled up my blog, I realized my camping theme wasn't really accurate anymore.  If everything else is changing, might as well change this, too.  So, I did a "redesign."  Deciding on a name change was difficult, but I read this quote and felt it was a pretty good place to start.  "A journey of a thousand miles begins with a single step." (Lao Tzu)  My journey is not technically a thousand miles, but it's sure going to feel like it.  It can be overwhelming to look at it all in a big picture and all the decisions that have already and still have to be made, but I can make it if I look at each single step.  So, this is the first step of my new journey.  I can't wait to see where it takes me!

Bow the Knee

When I was in the 8th grade, the high school choir at Windsor Hills Baptist School sang a song that I absolutely fell in love with.  I still find myself singing it all the time, almost thirteen years later.  It never fails that when I start to stress about things and let worry get the best of me, that God reminds me of this song and where I need to be in the midst of all this worry, and that is on my knees.  I don't know that I'm necessarily stressed, but I've had a lot of things on my mind the last few days and this song keeps coming to mind.  Since it's always such a blessing to me, I thought perhaps if I shared it, it would be a blessing to someone else as well.

BOW THE KNEE

There are moments on our journey following the Lord
Bow the knee;

Where God illumines every step we take.

There are times when circumstances make perfect sense to us,

As we try to understand each move He makes.

When the path grows dim and our questions have no answers, turn to Him.

Bow the knee;

Trust the heart of your Father when the answer goes beyond what you can see.

Bow the knee;

Lift your eyes toward heaven and believe the One who holds eternity.

And when you don’t understand the purpose of His plan,

In the presence of the King, bow the knee.

There are days when clouds surround us, and the rain begins to fall,

The cold and lonely winds won’t cease to blow.

And there seems to be no reason for the suffering we feel;

We are tempted to believe God does not know.

When the storms arise, don’t forget we live by faith and not by sight.

Trust the heart of your Father when the answer goes beyond what you can see.

Bow the knee;

Lift your eyes toward heaven and believe the One who holds eternity.

And when you don’t understand the purpose of His plan,

In the presence of the King, bow the knee.