Archive for the ‘Health’ Category

Listening

Posted: May 4, 2014 in God Moments, Health, Uncategorized

Silence is pure agony to the one that feels alone, yet to the child of God it is an ordained appointment with Abba.

God brought me into existence with the gift of severe hearing loss in both ears. My world has no lack of noise. I am a wife and mom to three young boys. Therefore, when God decides to grab my attention early one morning by short-circuiting my hearing-aid during the craziness of the carpool routine, it throws a static blow to this mom’s world.

Silence is gut wrenching abandonment. Suddenly, I lost the ability to truly connect with my husband. My mind spiraled trying to interpret his body language, his temperament and my satisfaction rating. My mind rushed through the endless possibilities like a puppy playing fetch with my emotions. My boys temporarily lost their over-communicative mommy. Not even abruptly invented gestures could ease the barrier of finding a fishing experiment gone bad in the toilet…again.  

I found myself in tears one night feeling incredibly alone, and unprotected while trying to stand for the ones I loved the most. As my heart shattered before His presence, I listened intently for a reply. What I received was far greater than what I had lost. I listened as I heard Him speak to me. His comforting hands held me in that moment in a way this orphan had never experienced. I needed to listen to His voice – filled with sounds of Truth, echoes of peace and resounding waterfalls of love. His Truth seemed to instantly put a soundproof barrier from my negative thoughts and I was overcome by the applause that He had chosen me as His child, dearly loved and cherished. Once you listen to that sweet song, life truly never sounds the same again. Silence is filled with a constant lullaby celebrating the end of loneliness. As His Child I took my place in His great symphony with confidence. 

God directed His music to allow my left ear to receive sound for the first time in my life and now I listen to the world around me in stereo. It seems so surreal that all of these events occurred in the order they did over the course of a month. God interrupted my life of hearing to show me the art of listening. 

Here I am Lord. I am waiting and listening. Use me today. 

The Foul Line…

Posted: February 3, 2012 in Blog Issues, Family, Health, PBCC

FIRST – I won the iPad 2 on Monday!!! Thanks for all of you who clicked and visited!!! I had over 1500 visits that day! Thanks to the teachers who spread the words in the schools and Michael who announced my blog at his conference (and thank you to the many conference members with iPhones and iPads that visited!!!). I’ve been playing with it a bit…trying to get the hang of it. Its a bit of a learning curve still! Any advice on apps would be great!!!

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Have you ever felt like you were standing on the brink of a game-changing event that, in all reality, you really had no control over the outcome? I’ve attended several sporting events in my life, thanks to my younger brothers who were involved in soccer, baseball, basketball, a short time in track and field and even football. My favorite sport to play is soccer…but my spectator sport no doubt is basketball. I’ve been in the crowd at the most amazing, last-second game changing, buzzer shattering moments. You know the scene…usually the most quietest kid on the team gets fouled with 2 seconds left on the clock in a tie game. Its always the quiet kids that make this moment so much better. Funny thing is, i don’t care how much these players practice, in the end, with this kind of pressure, its a pure miracle when that ball swishes through the hoop in a foul shot attempt.

But we live for these moments…these times where life kind of stops and goes in slow motion. Time when some learn faith in something or someone that they never knew they had. time when fan might even wish they could take on the player’s burden.

That’s life. its filled with these on-edge, game-stopping moments.

That’s sort-of where i feel myself right now. This week has flew by way too quick and I’m updating now just so I can say I updated at all! My mind is focused on Monday’s first guided radiosurgery attempt and then Tuesday and Thursday’s chemo and ivig treatments. Its not the actual treatment part that bothers me…and to be completely honest here…it feels AMAZING to just sit for a bit and not have really any responsibilities…no doctors to call, no appointments to change, no emails to answer, no messes to clean, no lessons to plan, no meetings to attend….I can just sit and be me. It took a bit to realize the gift God had given me through this time…funny…I’m even somewhat excited to have this time to myself. i even registered for the ‘no visitors” list. its not that i don’t want friends to be with me…please don’t see it that way. but besides sleeping, I’m always responsible for someone, somewhere somehow! It stresses me out sometimes…this is my ‘escape’…normal people take a vacation, I go to chemo…tomato, tomato….

My point here is that next week could go in so many different directions! The oncology team is very prepared and ready for it all. On Monday, I will have a cardio team in the next room monitoring my heart during the treatment. If my heart rate drops, treatment will immediately stop and another course will be determined. The medication I am going through was selected just for me and my past dealing with various kinds…all have side effects (not even going there). There is also the change that during the radiosurgery that my cidp can be irritated enough to cause immediate pain, even temporary loss of use of my arms, legs or both. And today I signed the paper waiving my rights…

The ball is in the air…

Chemo is a return for me being that I had some involved with my previous ivig week (which has now been labeled a successful treatment for me…THIS IS HUGE being that it can take months to determine the right type and dosage of ivig that can work…in my case we’ve been at this since September, so not too bad). This Tuesday and Thursday I will have a full dose of chemo (I had a half of a dose spread over a week with my ivig…now I’ll be taking a dose a day). I was incredibly tired, nauseated and could barely eat anything during my last treatment…and this time WILL be worse (they are blunt about this). Steve has several types of soup recipes not just pulled…but he has all the food already purchased. He is determined to get food into me one way or another. I married a cook…I knew exactly what I was doing!

The ball is STILL in the air…

As the seconds count down to Monday, I am going to try to soak in every moment. I obviously hope for the best next week…God moved before, He can do it again. This time it just seems more real to me…there is no escaping a growing tumor in your brain. You can’t run from a laser light show shooting at your frontal lobe. I am hating the idea of getting poked over and over again for blood, iv, meds, chemo….(still would not like a port though).

But the hardest thing for me next week will come Wednesday night when our church, PBCC is having a Be HIS Family Dance night. I’m not sure if I’ll be there. Yet, funny thing is, I’m planning (more like assisting) as members from our congregations prepare for an event I SHOULD be at. I went out yesterday and got a long red carpet for everyone to enter on…because after all, the stars of the party are our guests! We have a bubble machine, laser lights, family dance music, games and just so much more. Whats hard for me to swallow is this will be a night families will remember for a long time. I want to be there and share a dance with Josh. I want to have the energy to act silly and cheer of my families that need this night out together. But right now, I’m preparing for an event I might not be at….its hard.

The other thing that will be difficult is Josh – he looked at me this morning and said, “Mommy, are you still sick?” Ugh…I hate these questions…trying to explain to a 4 year-old that mommy isn’t feeling completely well, but will be feeling horrible next week is…well, not possible. So, I told him I still had to go back to the doctor, but that I was feeling a LITTLE better today. It made him smile…and off we went.

The good thing about next week is that our family is well taken care of. I don’t have to worry about my boys…I can just focus on me.

The ball aint moving for a bit, so I’m outta here to spend time with our family…but I cared to update! Keep praying as I know you already are!

Patience

Posted: January 25, 2012 in God Moments, Health

I hate patience…especially if it is waiting on something I think I deserve. But, I guess God has a way of teaching us things when we need it most.

These last few days have been a whirlwind…some days feeling good (like today) and then feeling completely overwhelmed and just ready to move to Hawaii (yesterday). There is just so much going on in my life right now, I feel like I’m spinning so many plates and just exhausted trying to keep everything going as it should…you know, the way I think life should go. Trying to spend time with my kids, trying to connect with Steve, trying to understand these strange things growing i my head, understanding CIDP and my limitations, recruiting more volunteers for our children’s ministry, preparing for a new Wednesday night program, trying to get the church website going again…doctors appointments, get-togethers, calls…cleaning the house (ummm…yea…)…you get the point.

I caught myself literally saying, “I can’t do it all.” At that moment, looking at my cluttered desk I saw a button that I received a year ago from a Children’s Pastors Conference…it read, “SDWSC” which means She Did What She Could. In other words, I AM not, but I know “I AM.” I am not God, but I know God…I can’t do everything, be everything, provide everything but I can do something for the Creator and Author of Everything. God didn’t create me to do everything…whew…that’s a relief!

My priorities are God, family, ministry….I get these reversed a lot. Its hard…its always been a struggle. But I’m working on it…

Today, my patience was restored. My meeting with my doctors got moved up to today. It was absolutely amazing. The peace and comfort I felt there today was just surreal…its like God was saying, “Its going to be okay.” Long story short, on February 6th I will have my first radiosurgical procedure to…are you ready for this…DESTROY both tumors! Not shrink…buddy, they are out to fry them suckers! The thing that blows my mind about this is that the center is the only one in Florida that has a specialist that has experience not only with meningioma, but with this procedure…and has 2 successful cases! This procedure lasts about 1 hour and involves the MRI-like machine where the doctors literally guide the radiation beams (gamma knife) in an through the tumor itself. I get to be fitted for a neat little head piece and I will be given IV (relaxing meds and dye). It will be disappointing that I can’t wear my hearing-aid…but they are working on a communication method. I am pretty good with reading lips, but this won’t help in this case. After each treatment, I will have IVIG and chemo the rest of the week. They were toying with the idea of offering it immediately after the procedure, but thought that would be a bit much for one day…I agree.

I will have the procedure itself done twice, followed by a round of chemo (equaling 2 weeks). Monday Feb. 20th will be an “off” day…but pending on how everything is goig, they might consider an alternative radiation method. The goal is to re-evaluate and re-group by Monday, Feb. 27th.

I’m told all of the side effects…tired, lack of eating, hair-loss…all of which I’ve already had. BUT to say that I’m thrilled wit going down this road again is…well…not true. In fact, the doctors warned me this time it will be worse being that I will have the full dose of chemo and ivig…both make me sick, and tired…and still bald (at this point I don’t mind being bald…I like my hats!). Its SO hard hearing Josh pray at night for “mommy to get better.” I guess that why I’ve been trying to do everything lately…I feel better…I just want Josh to know I’m trying.

So…I have the rest of this week and next week off of treatment (pre-meds, but no treatment). I’m so happy for these breaks in the storm. I have made so many calls lately…oh man, I love having the energy to reconnect again! I love feeling good…why can’t I just be healthy? Maybe its Gods way of rewarding my patience…knowing it will be tested again soon.

I’m getting off…too much I want to do and its so hard making myself update when I have energy…what can I get into…hmmm….UK WILDCAT BASKETBALL!!!! Go Cats!!!!!

"The Short Straw"…Again?!

Posted: January 20, 2012 in Health

I’m not sure if you have literally ever had the opportunity (or should I say dare) to get a group of friends together and see who grabs the short straw. I’ve never literally done this (perhaps its because I never have straws in the house?) but I feel like I’ve once again come up short. The doctor literally looked at me and my friend Gloria that attended this week’s batch of appointment with me and said those dumb words, “It looks like you’ve drawn the short straw again.”

Let me just say it here and get it over with. Once you read and process (you might have to come back) – continue reading…

I have two brain tumors, one a dime in size, the other around a penny in size. Both are meningioma (treatable tumors) that are common to cause low CSF (some of you may remember my issues with this last August…these are the cause of it). The smaller tumor is located in my parietal lobe of the brain. Since my very first CT and MRI back in August, this tumor has simply just been there. The other “penny sized” tumor is located in my frontal lobe area (both on the left side of my brain…go figure) and has not only grown slightly (less than a cm) but has also changed its overall form. The doctor believes its reaction to the latest round of IVIG treatment with the added chemo infusion actually indirectly reacted with the tumor itself. This is a good sign when it comes to designing a treatment plan – but it is a bad sign because these types of tumors (though very rare) are malignant. At this point, the doctor refuses to do a biopsy because my CIDP has not been under remission and the risks outweigh the advantages. Through the multiple blood tests and deeper (level 2 MRI), combined with the shape and reaction of the tumors – the frontal lobe tumor is being called malignant and the parietal lobe tumor is benign (but can become malignant – but not a big threat at this point). BUT the reason (the doctors believe) that my CIDP has not encountered a full remission is partially due to these two tumors (the other half fully being me…my reluctance to stop and listen to my body when it needs rest).

Things to grasp here:
 – The tumors are small and have been caught early (thank God)
 – Both tumors are the same type, yet differently classifications (that’s just a fact…)
 – People can simply live with these tumors if they can go into remission (especially given the size and location of the smaller tumor)
 – My hair is already gone due to the previous chemo – one less emotional drawback to deal with!
 – Doctor will meet with me again this coming Thursday at 2PM (no treatment is even set-up without pulling my cardio, neuro, PCP and oncologist together – their meeting is set for Tuesday as they Skype in the specialist (neurologist from Atlanta) who has dealt with CIDP previously with 2 other patients…one a LOT like my case). The oncologist with present the plan to me on Thursday.
 – I see the other specialist in Tampa on Feb. 1st – at this point, the department has agreed until the next week (Feb 6th) to even begin any type of treatment (which is good – I wanted a second opinion).
 – I feel confident with the information I was given yesterday. Not only does it make sense to me, it follows the way I’ve been feeling too…I appreciate the bluntness of doctors, not the lack of empathy…but at least mine give it to me straight.

Mentally I feel like I’m on track…somehow. I understand and can explain what is going on. I’m still getting the hang of the terminology. My emotions haven’t even remotely caught-up….and they won’t most likely for a bit.

I am, however, frustrated. Like I mentioned, the short straw is no fun. It means others out there have a perfectly good straw and are enjoying life with no “extra” bending to do on their part. Here I am, trying to figure out really how to even do life and I draw the short straw…again.

Okay God…I’ve had enough now. Really…I’ve been through enough to last me the rest of my life…shoot, I can even write a book and get published…and create a SERIES!

Funny thing though – when I got in my car last night just guess what song came on the radio? No kidding here folks… it was Josh Wilson’s “Fall Apart” (if you are a new reader…refer to my previous post “Fall Apart“). My mind instantly went back to the way I felt then…and now too…my life really is insane, falling apart and God is right there in the middle of it. I do see Him now better than I did before all of this. So, I guess that means there will be closer, more amazing God Moments to come.

And you thought my blog was getting Boring again…its almost like God was giving me more writing material. (Yes…I can crack a smile today).

I haven’t really dealt with any of this yet…but I’m sure you will hear it soon. Please continue (as I know you will) to support my family in your prayers.

I’m thinking about taking a weekend away just for Steve and myself…as in next weekend…hmmmmmm….

When God Fails

Posted: January 18, 2012 in Bible, Health

Did the title get your attention? Those words crossed through my brain more than once this week and I caught my thought process each time. Let me start from the beginning of my week…

Sunday was amazing! You know the feeling you get after being at a camp, retreat, conference or getting out of the norm and spending time with God? Some call it a “spiritual high.” After working with teens in JDC, I don’t really take to that term anymore. I guess you can call it “feeling God.” Really…isn’t that it? You come back from an amazing event where someone had guided your thought process into a new defined relationship with God – you learned something new, you shared, you learn from others…you can literally feel God alive in your life. It’s a great place to be. I attended the Children’s Pastors Conference and you can’t not attend this networking event – surrounded by literally hundreds of children’s ministry workers (both paid and volunteers) who love God as much as you do and have been created for ministry, just like you – you can’t worship next to others from different affiliations and backgrounds and all across the country WITHOUT returning in just an awe for Who God is and What HE is doing. To be this excited and humbled – and return to a place I call home and family here at Palm Bay Christian Church – it was a great experience. I love what I do…but I love where I am even more. It’s just a great place to be in my life.

With this being said – I turn around Monday to start the week with doctor’s appointments. The pain had returned in my legs over the weekend. I pushed myself too hard…but for good reasons. Yet, the pain was back. I stopped my daily devotion time because I was at the conference and just really busy networking with everyone (mistake number 1). I knew my appointments were coming up and I just assumed everything would be fine and that God pulled through in such a big way before, He would rise to the occasion again (mistake number 2). Monday morning I get back to the office and immediately start trying to get caught-up instead of mentally preparing myself for my appointment (mistake number 3). You see where this is going don’t you?

I get to the doctor’s office frazzled and reality quickly set-in. I wasn’t feeling calm. I wasn’t really feeling good at all. I allowed circumstances to take control and now I was going to deal with the scattered pieces. Somewhere between getting weighed (seriously, is that really needed at EVERY appointment…I still think that scale is off big time!) and waiting for the neurologist to enter, reality sank in…this was not going to be good. I did what any, rational person would do in my situation – I put on my game face and got prepared to justify my actions (even though I knew I messed up).

The neurologist did the muscle energy test and realized that my reflexes were again getting slower…my knees are always the first to go. It’s annoying watching your body suffer and knowing there is nothing you can do to stop it. Yet, I wasn’t anywhere near the point of my “Juice-Up” week. I could stand with a cane…I needed my cane, but I could stand upright and somewhat balance without support if needed…until my knees gave out. Yet, this is not where I was on that amazing Friday, just a short week ago. I knew that. My neurologist knew that.

Just a side note here – I will never mention the names of the doctors I see on this blog. Because this is a public place and I don’t always agree with all of their decisions, names will not be used. Yet, if you are one that would like referrals, let me know!

The visit continued with a cardio check with my pacemaker. I was scanned (this alone is a new experience for me…I literally live with technology now!) and the report spit out that my heart was not beating regularly, specifically during the early hours of the morning (2am-5am window). A few times the report included a stall in the pacemaker’s response to initiate. My neuro quickly contacted my cardio and set-up an appointment for later on…today actually in about 1 hour.

I was also consulted reference a few spots they have been following off of my CT and MRI scans. At this point, the doctors are varying widely on opinions – ranging from formation from birth to a small sized tumor (easily treatable in my case). Yet, with these spots being there, the doctors believe this is what may be keeping the CIDP in this constant cycle and not allowing the IVIG to stay in effect as long. Just to keep you (the reader and friend clear) – these spots measure a dime to a penny in size and are not growing. No diagnosis has been made and they have been following these since August.

With all of this being said – my neurologist looked at me. I looked at him. I took a deep breath and let him go. Doctors aren’t always the most empathetic or compassionate. This guy is neither – YET he does stick to the reality of what is going on. This statement stood out to me the most, “Bethany, your life has changed and you are pretending like nothing is different. You are no longer who you were – your lifestyle has to change, period!” CIDP is one of those conditions that can be made worse by not listening to your body. When you get tired, you rest…not in a few minutes, but that second. I was tired since Wednesday…and hadn’t stopped. I knew this was coming, but I just wanted everything to be fine.

I wanted to say God healed me, permanently.

The truth is, I do believe God moved in a powerful way that Friday, but cidp is still a part of my life. God isn’t always going to prevent my pain. God isn’t always going to “wow” my doctors. God isn’t always going to do what I think is best.

Sometimes, like there in that doctor’s office, I buy into that lie that God fails.

I could ramble on my thoughts through that evening as I tried to digest everything I had been given. It’s not fair. I just returned from a conference and I have so many programs and outreach events I want to do. Now, I’m being told that I can’t because my body that (in all fairness here) God created and God can heal…and I can’t do ministry because of a broken body? Really? Are you kidding me?

I was mad. I was frustrated. I hid it well. I went from feeling God so close one day to being furious with Him the next. Good thing wrestling with God is something that’s been going on for a while. Look at Job – he told God like it was and God pretty much put Job right back in his place too (Job 38-41). I knew that…but I didn’t feel that.

Yet, God ain’t done yet (I still have my Kentucky roots y’all).

On Tuesday I started my day continuing through my Youversion plan – I was going through the Gospels and I was on John 6. It was supposed to be an easy read. Jesus fed the 5,000. Jesus walked on water. Jesus talks with the crowd. I’ve read it all countless times. But this time, something just nagged at me. I ended up reading the entire chapter THREE times and that nagging feeling…that feeling I get like there is something here that I don’t agree with…that feeling wasn’t leaving me. I literally closed my journal without writing a single word…this one was going to take some deeper thought.

On my way to Walmart the light bulb came on. Nothing really triggered it, but I just could not get the sequence of events out of my head. Are you ready?

God is saying, “I AM who I AM. That’s all you need.”

Let me explain…

John chapter six opens with the feeding of the 5000. Jesus takes the lunch of a small boy and feeds the crowd until they are full and still have baskets leftover for more meals. The people were amazed and wanted to crown Him king, but Jesus slipped away from the crowd to be alone (verses 1-15). The disciples waited for Jesus but as the evening grew dark, they decided to get on a boat and sail to the other side of the area. As a storm broke out Jesus came to them walking on the water and they immediately let Him in the boat (verses 16-21 and this does not record Peter’s walk). Here’s where things get interesting for me – the next day the crowds come back wanting to see Jesus. They look in the area where He fed them and discovered He was not there. Then they find Him on the other side of the water and swarm Him. (verses 22-24)

Then you read the dialogue:
25 They found him on the other side of the lake and asked, “Rabbi, when did you get here?”
26 Jesus replied, “I tell you the truth, you want to be with me because I fed you, not because you understood the miraculous signs. 27 But don’t be so concerned about perishable things like food. Spend your energy seeking the eternal life that the Son of Man<sup class="footnote" value="[f]”>[f] can give you. For God the Father has given me the seal of his approval.”

(In other words – Jesus is asking these people to love Him for Who He is, more than the signs He can do).

28 They replied, “We want to perform God’s works, too. What should we do?”

(The people figure, if He doesn’t want to feed us, maybe we can learn how to do that trick. THEY MISSED THE POINT COMPLETELY).

29 Jesus told them, “This is the only work God wants from you: Believe in the one he has sent.”

(Point blank – how can they get this one messed up?)

30 They answered, “Show us a miraculous sign if you want us to believe in you. What can you do? 31 After all, our ancestors ate manna while they journeyed through the wilderness! The Scriptures say, ‘Moses gave them bread from heaven to eat.’<sup class="footnote" value="[g]”>[g]”

(They messed it up…they are still focused on wanting to see Jesus doing something incredible, in this case with food. My guess is that the guys must have been hungry and the wives hadn’t gotten breakfast ready yet….seriously, you notice their one track mind?).

32 Jesus said, “I tell you the truth, Moses didn’t give you bread from heaven. My Father did. And now he offers you the true bread from heaven. 33 The true bread of God is the one who comes down from heaven and gives life to the world.”

(Though they might not get this yet because the cross is still a ways away at this point, they do know that God has told them that He would been sending them a Messiah to save them from their sins. Jesus is saying “I’m here guys…its more than just bread – I’m offering you salvation!”).

34 “Sir,” they said, “give us that bread every day.”

(Big shock…they miss it again…)

35 Jesus replied, “I am the bread of life. Whoever comes to me will never be hungry again. Whoever believes in me will never be thirsty. 36

(My interpretation here…LOUD AND CLEAR – “Bethany, I AM who I AM. I AM all you need.”

I wonder how many times we get caught up expecting God to show-up in ways that He has done in the past, when He is just saying, “I am bringing you so much more than just temporary healing. I have brought you eternal life. Now go forward and live like you believe it!”

Granted, some of us may be wanting God to show-up and do big things for all the right reasons – I would do anything for God to heal my CIDP and get these doctors off my back…in all reality, I’d love for Him to just show-up like He did on that Friday again…an unexplainable improvement and STILL baffles these guys! I love it! Yet, it really is only temporary. What if God did cure me from my CIDP? Great! But not too many steps down the road would I be asking for something else (my kids to get better, Steve to get into a nursing program and be Dr. Oz’s assistant…small thins like that). God can easily cure the temporary, but the thing that makes God who He is, that’s what seperates God, Our God, from everything else! It’s the salvation He brings to us through Jesus Christ. That’s it! It’s more than the amazing wonders He does…Jesus was more than feeding the 5000 and accomplished much more than just walking on water. He communicated that God loves us and His plan was to be together with us, but our sins got in the way. We can’t get to God by our own good deeds or trying to live the perfect life. Paying the price for our sin, God sent His Son Jesus to die for us and rise again so that we could be saved and have an eternal relationship with God forever – AND essentially live a better life here on earth through that amazing relationship.

Don’t miss that! Don’t get too caught up chasing what God “could do” that you miss what He has “already brought”! Now, that grumble for bread will always be there – we want God to do big things in our life. Yet, it should never cause us to lose sight of who He is.

Plus, God uses us anytime, anywhere…even if our stomachs are rumbling a little louder than usual.

So, this put things in perspective for me in a big way – a little dose of reality that I needed. I just wanted to share.

You are truly “bought as-is and used as His.” So, use what you got, with all you got, for the One you got it from!

I’m Back!

Posted: January 16, 2012 in Health

I didn’t do much blogging at the conference…though many of my readers don’t know how to comment of my blog (yet), many do know how to email! I received 13 emails asking when I’d be posting again! I LOVE the encouragement! This blog adventure is still very new to me and it has been received with open arms to so many. I launched this as an attempt for me to keep everyone informed but it has turned into a source of encouragement to myself and countless readers. If the stats are correct, this blog has generated over 2,500 hits in two weeks! That blows my mind and my heart. People actually enjoy reading my thoughts and how God continues to work in my life. I love it.

I made it to and from the Children’s Pastors Conference without too many bumps in the road. I tried to do too much (you are smiling…I see you!) and ended up being exhausted. Yet, the conversations I experienced as well as the many tools I now have to use for PBCC’s children’s ministry was well worth the slight pain and exhaustion.

Personal achievement – I made it on my first solo adventure with my little scooter without taking out too many people AND I survived too! This may sound petty to some, but this scooter is an entirely new adventure for me and our family. We purchased a GoGo Pride scooter used off of Craigs List shortly after my pacemaker procedure. The doctors were forcing me to face the reality that long walking trips were not going to work with me…at least not for right now. After realizing they were right through struggling so many times with the cane, I swallowed any remaining pride I had and started the quest. Do you know how incredibly un-sensetive the scooter market is towards 29-year-old adventurous moms? Seriously…after a few days of looking I just couldn’t imagine myself driving down the road with a hitch on the back of our minivan…this wasn’t me at all. I wasn’t looking for a bulky scooter built for luxury…I was looking for a small speedy road demon meant to catch running kids…primarily MY running kids….at Seaworld, Disney and soccer practice! I wanted something that could get my life back.

I connected with a guy with the scooter I now own and we worked out a great deal. This scooter is AMAZING on turns and can go up to 4 mph…I can get up to 12 miles on a single charge! I used the scooter during the entire conference and didn’t even charge it once. It also comes apart, so it goes right in my car and I’m able to assemble and dis-assemble myself. I still enjoy people-bowling on occasion, but for the most part, I’m finally getting it down.

The thing I hate most is the view. I hate being looked-down at. You only get this from seeing the world from my seat…a seat that goes with me on these long trips. I know if I decide to walk the distance, I will feel more “normal,” but I also take the chance of severe exhaustion, which leads to the return symptoms of CDP. I’m feeling pain again in my feet and legs. I know this weekend, as well as my decisions to use a cane at church today brought it back. Sometimes I want to enjoy the “normal” view so much, it ends up costing me in this way Is it worth it? I’m not sure yet. Perhaps I should ask the other children’s ministry leaders I enjoyed Downtown Disney with…or maybe I should ask Josh how much he enjoyed having mommy up and playing at his birthday party. Really…its a tough choice and I’m still a rookie at making these choices.

I’m getting ready to go through 3 appointments this week…Monday with the neurologist, Wednesday with the cardiologist and Thursday with the imaging department. Oh boy….back to reality! BUT I’m also back in ministry this week with Family Night, catching-up with my kids (my ministry kids) and meetings!! It feels like a little bit of “normal” to finally be back in the office at least a little bit. I need to discover a pace that works for me now…that has been quite a challenge. I’m working on it…

As I close, let me encourage you to do something this week. Do something purposely to change your life view. By this I mean…it might be walking on your knees in your child’s bedroom or it might be simply changing your seat in a work meeting. It might be making that trip to the neighbors house to watch their kids or possibly even volunteering for a few hours in a soup kitchen. Sometimes God purposely changes our view and we adapt to see His face, though at times it might not seem as clear as it once was…but it is there. He might not be purposefully changing your view, but you can allow your view to be changed to see Him better (through empathy and seeking out those who need to experience His love in a new way – through you). I now have an amazing love for those people who live daily in wheelchairs…especially our younger generation. I have no clue how God is going to use this new viewpoint in my life…but it’s there for when that time comes.

See…I told you…no matter what, God can use you in any situation. Instead of asking “Why is this happening God?” Ask “How are You going to use this God?” (and I usually add…”Please show me how You are going to use this…hopefully sooner than later!).

Have a great start to your week!

Laughter

Posted: January 11, 2012 in Family, Health

Monday 7AM…I discover I’m losing my hair…again. I need to get Josh out the door, so I just wear a hat. (Head shaved now…back to wearing hats again!)

8:45AM – I meet a few friends to sign a living will…ewww…something nobody likes to really talk about. The doctors have been advising me to get one done, but that always brings in emotions that really I could do without. Yet, its something that needed to be done.

9-10AM- I realize how really far behind I am in the office. I start a to-do list.

10-11AM – Staff meeting…love our staff so much! We spent time celebrating how God is moving in the lives of those here at PBCC. Love these “God Things.”

I grab a quick lunch and by 1:30 I’m in the doctors office parking lot. It was a whirlwind…I wasn’t ready…I had no time to prepare.

I was told that the treatment was working but more appointments, further treatments and discussions are underway. More treatments? More issues? More appointments? There have been these weird spots that keep appearing on MRI and cat scans that just drive my doctors crazy (anything the doctors can’t explain drives them into a hissy fit). But they were trying to tell me that these “spots” could cycle my CIDP, instead of sending it into remission for a longer period of time. Conclusion – yes, the new ivig treatment and oral medication is working BUT now we have other issues. Joy…there always seems to be “other” issues with me…I’ve had this reality my entire life! It really gets old after a while!

The news hit me like a brick. Smile gone. Emotions numb. Feeling lost, angry, hurt…ultimately alone. This is not how I pictured my Monday going…”God, I think you misunderstood my prayer.I prayed for a happy ending, not a continuation to more issues here!”

But I was given permission to attend my conference…I’m so excited to get out of town WEDNESDAY and take a break.

With this, I picked-up Josh from preschool just anxious to get home. Josh wanted to feed the turtles. He wanted to count the clouds. He wanted to go to the park…I wanted to go home. I wasn’t exactly a good mommy, but I was trying.

We got home and a few hours later I found myself shopping for a pair of jeans with Josh…I had to get a new pair because my favorite jeans encountered a mysterious hole, right at the knee. Josh decided he was born for fashion right in the middle of the store. He literally helped me pick out jeans to try-on as well as a few tops. He would give each outfit a thumbs-up or thumbs-down and then went on to tell everyone in the fitting room why he felt this way. (I would say he and Paula from “American Idol” would get along great…Josh is not a Simon!).

Somewhere between Josh fixing my pocket and the laughter from the next stall over, I realized I was having fun. I was shopping with an almost 4 year-old boy and really having fun! Wow…had my life really come to this?

Then I remember how our Father loves to hear us laugh. We don’t have to be enjoying life to laugh…we just need good friends and courage to take our son shopping. Once again, God gave me what I needed. I came home in a much better, relaxed mood (Steve for one was grateful). 

Some may say it was a God moment that shopping even went that well!

This morning a specialist called from Tampa that wants to take a look at my case and is going in a much easier direction. We will see. More on this after our appointment in Tampa set for February 1st.

So, my break starts tomorrow. I may need to remind myself how to laugh more.
Just because its raining doesn’t mean you can’t dance in the rain!
Have a great night!