Archive for July, 2012

Picture Journey

Posted: July 26, 2012 in Family, God Moments

A few weeks ago I wrote about going through the past 12 months of pictures for the original purpose of creating a new photo book for our family (we add another book each summer of the past year’s photos…summer usually means SALE!). As I started going through these images, I was brought to shock and awe, once again, of the journey God has brought me through these past 12 months.

So, I tried to create something worth sharing. I dont believe this is the greatest, but being my time with family is my new top prority right now, this will have to do for now. A friend watched the video and went, ‘Its okay..but it doesnt really describe the emotional roller coaster you went on…” but you, my blog readers get that. These are pictures…you friends know the background to these images. To YOU these will make more of an impact…to the stranger…not so much.

The background is me singing the be Strong And Courageous song to Josh…he recorded it by accident, but it was SO perfect being that this song kept me going through my many sleepless nights. Steve isnt in many pictures…what can I say? He really doesnt like to be photographed (dont worry…Im breaking him down slowly). But Josh…yep…he was my photo buddy! Encouragement comes through the most amazing places sometimes!

So, here is the first attempt at this…maybe Ill create a follow-up…maybe….It IS too long right now. but like I said, just sharing pictures! 🙂

Love you all…

Guard Your Heart

Posted: July 22, 2012 in Uncategorized

Guard your heart above all else,

for it determines the course of your life. (Proverbs 4:23 NLT)

Sometimes spending time immersed with something you love results in a heart change. In my case, that “something” I've been enjoying lately has been extra time with my husband Steve and of course our two boys. To go nearly a year on and off bed rest, going to and from treatments, days living in the recliner, days I could barely get out of bed at all…days I literally shut off communication with those closest to me because I myself was scared…those days. To go from that to completely energized, excited, planning fun things for Steve and I to do when he gets his break from school, having a BLAST with him and the kids in Orlando at the NACC! My days are going by SO quick now…and to think I almost missed this heart-reshaping opportunity.

Just a few short weeks ago, I found myself sick, barely walking straight and feeling worse than I had in a VERY long time. I was tired, beyond frustrated and nothing seemed to be equating any answers. It was suggested to me…okay, it wasn't suggested, it was mandatory that I take a month off of my duties at church with pay. I still remember trying to get out of it thinking, “There's no way…they can't do that to me…they NEED me!” We all are needed at our jobs, that's why we have one…but I had no idea how much my family really needed me more. My priorities were completely and utterly out of wack and it was plain to see from those around me…I'm glad I was put in my place at the right time.

Because I was sick, I couldn't do work even if I wanted to. So I slept. then I headed to my miracle weekend of treatment for my official “GBS” diagnosis. It took a few days to kind of “test the waters” of my ability going, ” There is no way I can be feeling THIS good!” I'm still feeling JUST as good if not better tonight, still resting here in my same comfy chair, but looking at pictures Steve and I have hung around our house, looking at dirty ice-cream dishes from our keeping the kids up just a while longer snack, smiling at the picture I took of the boys during our bike ride today…

What you define in your heart asmost important to you does indeed shape your life. YOU tell your heart…your mind is SO powerful and you do have a choice to decide the rank of important people and things in your life. I feel like God has truly given me a second chance to reorganize my heart and in return live the abundant life He has called me to live.

Sometimes, being in ministry, I feel the need to be on-call 24/7 which sends my husband and kids to the back burner. It's been SO easy to do at our current ministry (I say our because our family is in this together). Our church has become a tight family with us during this past year…loving our entire family in ways I could never imagine. I just now feel like I really grasp the reality of the church established in Acts…I always thought of it as a goal, never really a reality. Our church has become extended family to us…BUT sometimes I said “yes” more to our church family than I did to my own. My heart was led to thinking, “God called me into this role so my family will understand” when in reality, God called me as a child of His first, a wife second, a mother third and everything else falls in fourth. Like I said, my priorities were a little out of wack.

I can't begin to tell you what an AMAZING month this has been! I remember thinking on July 4th -I'm going to be SO bored and lonely…I really need to get work done! Today, I still haven't really done much ministry-related tasks…except show-up at family activities (I kind of feel like a normal church member…WOW!). Without needing to balance this idea that I was needed somewhere else, after I started feeling better our family started reconnecting…and after the year we've had, WE NEEDED THIS!!! I started trying new recipes, Steve and I have been working on the house together, we have taken the boys a few places…but Saturdays are OUR time…and I REALLY like it!!! I've never had the opportunity to reshape my heart and work out my callings, in order, with God. I am so thankful for this time I had to get my life back together from literally the ground up. I am thankful for a church that has leaders so bold to conquer this task and see it through. I'm glad to be at PBCC, but I love my husband and kids more to see I'm going to have to slow down and put them first again. Oh the joys of balancing!

I'm not sure if anyone in ministry, with a young family truly has this balance thing figured out. Now add in a new house, a year of life-threatening illness, a husband in nursing school and two boys (yes, gender DOES make a difference) both under the age of 5…well, I've written myself a recipe for insanity! Whew…good thing others out there looked in and saw what I needed, when I needed it the most…even when I couldn't understand it at ALL at the time.

So, how are you? Are your priorities in line? Are you trying to spin just one too many plates? Spending too much time away from family? Need a heart transformation? Just remember, others do see your heart…you can't hide it! You may think you can…but be warned, what is in the heart truly does become known to others in due time. Catch yourself now…or maybe there is someone you care about going down the wrong path – take care of your heart, don't let your heart lead you astray.

And for those wondering…I'm still in a project with Caden's room, but I've been assigned some AMAZING opportunities for the Fall at PBCC! So, don't worry…I'll be working myself back in to things SLOWLY…but all I have to say is that the Fall at PBCC is going to be such an awakening experience…I'm GLAD to be here and part of it right now! Gods timing is just perfect!

We Are On A Roll!

Posted: July 15, 2012 in Uncategorized

It's Saturday. Just 4 days ago I was told, “Bethany, consider yourself in FULL remission… No cancer, no CIDP and recovering from what we believe was incorrectly treated GBS.” Those words hit me hard…I just sat there, glazed over thinking, “If I actually choose to believe this, what will happen next?” Pure optimism at its finest.

Then I realized that I started this health insanity exactly one year ago this August. I should complete -God willing- my follow-up treatment the first week of August. Look where God has taken me these past few months…just amazing.

Tonight, I am happy to report that our ENTIRE family made it up to Orlando for the North American Christian Convention! A week ago, that trip seemed impossible…yet, there we were! I drove up with the boys Wednesday, completed the volunteer shift in the children's area just in time to meet Steve for dinner! We actually skipped out on a few sessions and “Refreshed” ourselves through the generous use of the motel pools, hot tub and amazing cable TV (the boys LOVED HBO Family…I had no idea they even had such a thing!). We really had a BLAST simply reconnecting as a family…a much NEEDED getaway!

Tonight, I met with a friend and then headed out to get groceries for the week…made dinner and then brownie sundaes for Steve and the boys! Josh told us “You are the best mommy and daddy ever! I love you!” I recorded it for later use 🙂

Things are really going great right now in Boring Land. I have thought about posting quite a few times, but why when I could be spending time with Steve and the kids? After a year of not physically being able to wrestle on the floor, cook, go for bike rides, go swimming, climb a few stairs, dance, give piggy-back rides….well, I've realigned my priorities. You, reader, are lower on the list…swallow that one nicely. I will still be updating, especially when I start working on a more regular basis again. Until then, I'm cherishing this time I have been given to focus on my husband, my kids and growing closer together as a healthy family!

Thank you PBCC leadership and PBCC family for giving our family this time for reconnecting and healing…what an amazing blessing it has been so far!

PS – I am now on Twitter! Follow me @bethanyboring

The Crossroads

Posted: July 10, 2012 in Uncategorized

Tomorrow is another one of them D-days for me. Dumb D-Days! You know…a day that puts you out of the crossroads and (hopefully) firmly sets your feet on the road you are supposed to take.

I've had my share of these days over the past 12 months…days I knew I was going to receive scan results, days of starting new treatment, days waiting to hear if I was going to be discharged…

But I'm really feeling like tomorrow is different. Partly, because I feel different. The other part has to be faith that God has chosen His timing, right now, to make things clear.

Let me explain…

This past weekend was a whirlwind. I started out Thursday in the doctors office – first getting much needed settings changed on my pacemaker (breathing much better now!), completed a scan to reveal no swelling at all remains where my tumors once lived…and the important absence of the invaders themselves! I was given a heart ultrasound just to make sure everything was indeed present and functioning…which it was. I then headed home to pack a bag and headed to start the new treatment booked for that afternoon. I had plasmapheresis, which is a procedure used to remove the infected plasma antibodies and refresh them with new, un damaged ones. The procedure went through the afternoon into the morning. I felt exhausted, but energetic. I was breathing easier. My heart rate was normal (as in not setting off the machine – so much so they stopped the procedure just to make sure everything was indeed connected…it was). My assigned nurse was Nick. Because of my insane health, I'm assigned a nurse that usually stays nearby during my stay. Nick was great company. Friday afternoon he admitted his boredom (due to my lack of activity…which is a VERY good thing) that he gave my hair a makeover! I really needed a funky new look! He did this during my brief IVIG treatment.

Between my treatments I received a NORMAL EKG and a higher EMG than has ever been recorded for me (measures electricity response in the muscle…means I'm getting reflexes back!). Long story incredibly short, there is a high chance that I could have been battling GBS, not CIDP. GBS can be a very serious form of CIDP if not treated – it can even lead to temporary paralyzation. It is believed in my case that last August my symptoms started and by September I has having a hard time walking. Because they though this was CIDP, I was given IVIG treatments which can simply put the most damaging effects of GBS at bay. GBS can attack any muscle (in my case the heart) which lead to much of the issues I encountered. the best part about GBS, once it is treated with plasmapheresis, it is commonly a done deal. No ivig reoccurrence. No pain meds. For me, IF it is ruled that this was GBS, I will be undergoing weekly check ups to get my heart back to handling more difficult tasks…from sitting to standing…eventually jogging. You can see now why I'm praying for this to be GBS…I still have recovery…but it will be just that, recovery.

Tomorrow I will have another EKG and EMG. The results will determine how my case will be treated from here on out. I'm hoping they will label me under being “in recovery from GBS”…but if it is determined CIDP is there…I'm still feeling great which means we found another course to take!

I love Joyce Meyers thought today – When David faced Goliath, he didn't focus on how dangerous Goliath was, he talked about how great God is. Don't talk fear, talk faith!

Pray for me!! I know you are!!!

My day started out the same.

Slept through the kids leaving for school…again. Woke-up tired, again. Grabbed a bit of cereal thinking, “Maybe this time it may give me some energy”…no. Drinking mountain dew doesn't even help. I just keep dragging on…thinking somehow I will magically feel better. It's been like this for a week now…frustrating me to no end.

You know me. I'm full of energy. I don't like to sit. Hello…did you not read the post about stopping? It was hard, yet energizing taking a week off. I was “back” Sunday and Monday before, out of nowhere, I caught a virus that landed me back in the doctors office again that Tuesday…a week ago today to be exact. It was confirmed today that I did have a virus and was not…I REPEAT…WAS NOT overdoing it! I just drew the short straw again. When you catch something ontop of CIDP, well, it just knocks you out. I was given very rough meds…one was a drug they give to patients before surgery. I now know this drug alone (given for pain) actually did not react well with my system…leaving me in a twilight phase for literally days. Fun fun….

In the midst of being sick, I was surrounded by doctors and close friends extremely concerned that I do not know how to pace myself. It was overly communicated to me that I caused this sickness I was going through right now because I tried to do too much, too soon. If I could cognitively think of it…I think I would have compared myself to Job. I was already down. I was told that my heart was suffering from the CIDP. I was told that I didn't understand what I was doing to my body by not stopping…when, in reality, I thought I had cut back…a lot.

For the first time in all of this…I admit it, bluntly. I QUIT. that's right…you read it correctly. I gave up. I folded. I quit arguing back. I just sat, sipped my pathetic Mountain Dew and drifted off into lala land. I cared less about trying to change anything. Nobody was listening! I knew my body felt “off.” I went to the doctor and came back with orders to rest and six different medications which made me feel WORSE! When I called in to complain, I got the “See if you feel better in a few days and then call us back.” Fine. Eventually you just buy-in that maybe everyone else is right and you just need to quit running.

Not so fast.

This afternoon I was feeling beyond horrible. It was decided that I was going to take a few weeks off…not my choice, but the way I was feeling, who was I to argue? I felt like I was just done in. How in the world did I get here? I glanced around the living room…it was me, myself and I. Silence. Darkness. Dread. Blah.

My phone rang. Actually it sounded, “Twinkle, twinkle little star…” I changed the ringtone a week ago for Caden. It made him smile…when he was around. I miss my boys. It's SO hard feeling like crud that you can't take care of your boys. I love everyone helping out…but I MISS MY BOYS! If you are not a parent, you have no idea how HARD this journey has been for me as a mom.

I answered my phone…it was the doctors office. Of course, who else would be calling? I've practically fallen off the face of the earth! Everyone has been calling Steve because I quit answering my phone when I got sick…people catch on quickly.

The voice on the other end asked if I had a follow-up since last Tuesday. No…actually, I was going to call…someday…But before I could really elaborate, I was asked to see a different doctor…a cardiologist that had been following my case since my low CSF incident that started it all. The name didn't sound familiar, but I REALLY wanted out of the house. I hadn't worn anything besides sweatpants for an entire week! The secretary told me there was an opening in 90 minutes or I could wait until a week from next Thursday. I told her I would see her in 90 minutes.

I called a friend who just happened to be 5 minutes away. I made it to the office early…yes, a rarely for me. But I guess the office was slow because I got right in.

I was calling Steve to let him know I wasn't at the house. I was excited…stumbling over my own two feet…but excited! It was an adventure…okay, maybe not the exact choice of words for the situation, but do I really need to remind you of my last week? Shoot…I saw a palm tree and tears of happiness flowed up! I was free!

In came the doctor. Still didn't recognize the guy…but after all of the white coats I've seen this past year, eventually they all just blend together. But then again, I was still not feeling well. He gave me a look over. Drew blood. Peed in the cup. Got the temps. Got the vitals…nice to see you too.

He returned and handed me a paper. “You are going to infusion. You need fluids and I'm ordering an injection too.” Oh joy…my favorite place to be…but I LOVE those chairs! I got the fluids and the vitamin injection he ordered. 75 minutes later and I caught myself smiling.

Back at the office – Dr enters again. “I see the last time we spoke was August of 2011…low CSF diagnosis.” Yes…and before I could start my rant of the years episodes of dramatic events, he started telling me, dates included. I just sat there, listening…I even forgot parts of my story! He knew dates, names, locations, drugs…the works. Here's the kicker…READY…he said all of this WITHOUT LOOKING AT HIS NOTES! Okay…either this guy is a total freak (jury is still out on that one) or he is really interested in my case (clearly a given). He didn't miss a beat…he stopped when he got to today and said, “And you come stumbling in here a week after you were treated and wait for US to call you? Have you not learned anything over this past year Mrs. Boring?”

My jaw was open…seriously…I felt the air go in and then leave my mouth…I just couldn't get my jaw to close. Awkward.

What he said next completely took me…energized me…had to be one of the best comments a doctor has EVER shared with me. Ready?

“You look like crap kid. You've given up. If that's the way its gonna be, go somewhere else.You are a fighter and deserve to win…now shape-up…I believe in you damn it, believe in yourself!”

I swallowed hard. I wanted to say something…but he said everything right. He took out my entire offense and defense in one blow. Crud. This guy knew my story and he knew me. Great…I can't fake my way out of this.

There was this long, awkward pause. He just stared at me. I stared at him. Then at the floor. Then back at him.

Finally he said, “Well, are you in or what?”

“I'm in” I muttered.

“Really? You go a week feeling like crud and you are in? No, you listen to me. We are doing things differently from here on out. I call the shots. I help you first. You call this office if you sneeze…you got that? You call until they get tired of hearing your voice they send you through to me! You don't give up! You know better than anyone else if something is wrong and you raise hell until someone listens…and if you are not heard, go somewhere where you are! Period! That's what caring about yourself looks like!”

And to think I was content drinking my Mountain Dew…shoot Dr Phil, where the heck have you been??

He continued to tell me that he had been reviewing my records (obviously) and noticed a lot of inconsistencies. Although all of my doctors are technically under one roof, they have a LOT of opinions, ideas, personalities….basically, he said there are far way too many people involved. So, effective today, he is my new PCP. Good deal. He gets things going and doesn't have me wait FOREVER just for a signature! YAY!

Second,, he is helping me find a local specialist to visit monthly regarding Charge syndrome. He is also giving me books to read. He has challenged me to not just take a doctors opinion…I can be the expert. Study up. I'm not sure why I didn't think of that. This goes for CIDP as well.

Third, I'm starting Gammex-C IVIG on Thursday (he moves fast). He doesn't care about getting all the paperwork cleared…my health, my heart, my mobility is more important than the fine print. It can be sorted out later. I like that someone puts my health above the red tape. I've been trying to get this IVIG for over a month and rejected getting a doctors signature. I no longer need that signature…I finally get the treatment I've been hoping for!

Fourth, after review of my heart ultrasound, he believes that my pacemaker could be changed to a different setting, putting less stress on the heart to recycle through the process. He does need to discuss this with another doctor, but feels confident he an do this on Thursday. I was also taken off all of the meds I was on causing me even more heart related issues.

The biggest…I love this…I will be getting another heart stress test and ultrasound early next week (possibly even Monday) to look at how the heart is formed. The dr explained to me that my heart is different shaped, which means to most it appears smaller – thanks to Charge Syndrome. However, being that the heart functioned properly prior to the CIDP, it is perfectly capable of maintaining a normal amount of activity PENDING the CIDP can (and according to him WILL) be under control. The longer we go just waiting for the right IVIG to clear the red tape, the more I lose the opportunity to continue to function as I like without relying on meds and a complete change of life. He will go into greater detail with me, but all of the necessary functions are going as needed…once the pacemaker is adjusted, CIDP under control and proper blocker in place, I should be able to regain most of what I used to do…at least with IVIG in the picture. He added the familiar clauses that “this isn't a given but a best case scenario”…but someone FINALLY is fighting for the best case scenario! ABOUT TIME!!!!

He also gave me permission to cut myself some slack. He told me when a virus attacks a body with an autoimmune disease, the body literally shuts down. I can't prevent that. I know my own limitations and I need to learn what they are, but I can't expect not to get a virus. Instead, move on. Get hydrated. Take my vitamins. Keep my appointments with him. And yes…rest…but don't completely stop. I need to move towards a goal. I need to have challenges to meet. My challenge this week – develop a new basic routine…something that can be added to slowly to see my limits.

With SO many voices, I'm looking forward to sticking with one that really does “believe in me.” Finally, someone who knows me, trusts me to communicate my frustrations and has agreed to listen. Plus, he is blunt as daylight…I can't ever walk out feeling confused on where he stands.

So…tomorrow is the 4th. I'm already feeling SO much better! This has been the most I have written in over a week (making up for lost time). I'm really hoping Dr. V is right. Dr. A had his time…now I need a central voice to get this chaos controlled.

If I can sum everything up, I will say to those of you feeling like nobody is listening…to those who deep inside feel something isn't right…FIGHT! Don't give up like I did! Granted, it was only a short time, but it was lost days that I could have had enjoying my family, instead of being dazed and sipping Mountain Dew. Don't give up. Relax. Know your boundaries…but make sure you find that person, that professional in your corner that is listening to you and wants you to be more than what you dream you could be someday.

My journey continues…. Glad you are still with me!

PRAY for clear guidance

PRAY the ivig takes and works (veins ready to go too!)

PRAY the ultrasound reveals what Dr V needs to see to make a clear consensus.

PRAY that the pacemaker can be changed (this is very simple to do…just connect, click on a computer and done!). PRAY it works!

PRAY I continue to rest…gets harder when I'm feeling better!

PRAY any new meds work or can be changed to play nice together.

PRAY that these next few weeks go smoothly…possibly doing plasma therapy as well…easy procedure which I'm really excited about…but new nonetheless.

PRAY for easy paperwork and correct medical coding and filing the first time…but thankful that I finally have a dr that fights to get what needs done!

PRAY for a clear scan…no clue when this will occur (late…was supposed to have one done a week ago).

THANK YOU ALL!!!!!!

My Animoto Video

Posted: July 3, 2012 in Uncategorized

My Animoto Video

I joined Animoto For A Cause, which allows the church and my blog to produced high-end videos. I used Cadens Birthday to sort-of figure out how things work. I believe I will use this same avenue to put a few of my journey pictures to motion as well. This is a great resource I wanted to share!

I am going to keep this short. I am still not feeling well. I have been sick for over a week now…hoping this ends soon. I need my energy and focus back!