Category: My Life

This is MS awareness month.  Although I am THE HUSBAND and do not physically struggle with MS, I have found that navigating these new waters of the Multiple Sclerosis disease has been a little AWKWARD.   I recognize AWKWARDNESS easily because my occupation as the Middle School Pastor at Oakwood Church in New Braunfels, TX unleashes many moments of AWKWARDNESS in my daily life.  (That is a completely different subject in itself)  However, this AWKWARDNESS is on a whole new playing field for our family.

WHAT IS MS?

Changes ARE AWKWARD – How are you doing on those New Year’s Resolutions?  If you feel like a failure, don’t worry, ANY CHANGE IS AWKWARD.  Imagine having to stick to those resolutions in order to survive!  That’s Intense!  One term we have discovered on this new journey in life is “New NORMAL.” In order to have a good quality of life, we have to insert the “new normal” phrase into the routine now.  In the first year of the onset of this disease Laura is daily taking four to five medications that include daily shots of Copaxone.  It is awkward enough to have to take meds for a sickness that ends up going away.  (Imagine having to commit to a daily regimen that doesn’t go away and has many side effects.)  She is committed to a Gluten Free Diet by a Dr. Ordered Wholistic Approach.  Fatigue gives way to daily, spontaneous bouts with energy and crashing in the midst of our daily routine (with two kids I might add!).  With new diet comes new groceries and an overwhelming feeling at HEB for Laura (so guess who goes to the grocery store now…do you see the guy in the picture above?  Do I look like I am an ALL NATURAL GLUTEN FREE DIET LOVER?).  Many big and small changes to our daily lives can be VERY AWKWARD.

 The Subject of MS is AWKWARD – Debbie Downer seems to find the perfect moments at parties to put just enough of a spin on life to kill the life of the party.  This Silent Disease is something that we deal with, battle weird side effects, and hash out as a family on a daily basis, but don’t really want to bring up all the time and be that Debbie Downer.  We know that the SUBJECT IS AWKWARD.  We also realize that God allowed this to happen at a time that could be the BEST TIME to find a cure.  One of the first thoughts relayed to us during the diagnosis was that 20 years ago would have been way different than today in terms of Medical Advances.  The subject of a Disease without a cure, but not as detrimental or even broadcasted as much as cancer and other life altering diseases can be tough to explain.  We get the “oh, you’re not going to die, so you will be okay” statement and feel dismissed.  The fact that we must realize is that this AWKWARD SUBJECT that we live with now is still a FAMILY CRISIS and STRUGGLE as we move to a “New Normal.”  We need our friends and family to talk and encourage us, now more than ever.  (So, who wants to hear about some new Nervous System terms I have learned lately?…)

Misunderstandings in the MS GAME are AWKWARD –  Living out the AWKWARD CHANGES and talking about the AWKWARD SUBJECT leads to AWKWARD MISUNDERSTANDINGS.  Many things are happening on the inside and it is hard to translate it all in a five minute or cordial 30 second conversation.

For Example:

Person 1: “Hey, you really sound like a health nut.”

Laura wants to say:  “I have MS and I am committed to a wholistic approach to battling the demyelination of the outer sheath of my Spinal Cord.  If I don’t eat right, my nervous system gets all out of whack and I feel tingling and sometimes burning on the inside.”

Laura really says: “I am on a strict diet”

Person 2: “Man, you slept through the whole dinner!”

Laura wants to say: “I have MS and my immune system is working overtime because it is fighting it’s own body and now fighting tons of drugs I just put in me today, so on top of my normal work stress, normal sickness and allergies, family kid stress and periodic husband stress, my body is naturally crashing in order to keep me alive.”

Laura really says:  “I am just really tired from the day.”

Person 3: “Wow, you look great.”

Laura wants to say: “I know I do!” Then she wants to say, “Since the diagnosis of MS, I have been on medications that don’t make me feel very well.  I have been nauseated most nights and early mornings, then I have to eat new foods with this Gluten Free diet. Sometimes I go to events that don’t offer the foods I need, so I don’t eat at my normal time and then feel sick to my stomach and miss a meal.”

Laura really says: “Thank You” (with a smile.)

Needless to say, that is just the surface of the awkwardness of misunderstandings.  In the struggle and vocalization of MS, others might MISUNDERSTAND that we are super grateful for where God has placed us.  We are in the beautiful Hill Country of Texas.  We have two amazing kids.  We get to have our parents living nearby.  On top of all that, we see Jesus do amazing things in our community through the people at Oakwood Church, and we have felt that love on a whole new level since August.

Here is something that I have written in my digital journal about how my personal faith mixes with this personal family crisis.

Personal Faith:

I believe God is Healer.  His creation of mankind is GOOD.  All disease and other physical ailments come from the direct or indirect effects of the fall of man in the Garden of Eden.  Sin separates us from God, intervenes with the Good Creation, and ultimately reminds us that we are not yet living in the New Heavens and New Earth.

With that FAITH, I believe:

1. God in His infinite power can heal Laura instantly if He chooses to.

2. God will use this disease to grow Laura’s faith and mine as well (not to mention our family and extended family)

3. God can also heal, redeem, and refine on a longer than “instant” timescale.

4. I must TRUST in God, no matter what, and seek His Wisdom and understanding in this personal struggle as a Child of God, Husband, Father, and Ministry Leader.

If anyone would like to KNOW how I KNOW JESUS and talk about that amazing Journey as well, I am always willing to have a conversation.

The Valley | Lauralbest’s Blog.

The Valley

Sniff…sniff…sniff, sniff.  Whimper, sniff.  These are the sounds I heard one evening as I was in the kitchen coming from Katie’s room.  I had just tucked her in and she seemed fine.  Katie has been clingy lately, but I’ve tried to nurture her need due to all the changes over the past few months.  They say that kids are resilient, and I think that’s true to a certain extent, but I think a child can take so much.

I put down my glass of water and walked into her room.  I brought her into my arms and asked her what was wrong.  She started to cry harder.  “Katie?  Honey?  What is it?  You can tell me anything.”  “Mommy?  Are you going to die?”

As a parent, I felt as if I’d just been soccer punched deep in the gut.  I squeezed her tightly and said, “Oh, Katie.  No.  I’m not going to die.  What made you think this?”  In between sniffles, Katie responded, “All your shots and what you can and can’t eat anymore.”  Trying to hold it together, I continued to hold her close so she couldn’t see my eyes tearing up and I said, “Katie, sweetie, I’m not going to die.  All my shots are helping me feel so much better.  The pills I take in the morning are working!  I am under the best doctors in the business.  Everything is going to be fine.  You don’t need to worry.”  Still shaken by my daughter’s fear, we prayed and thanked God for our trials and thanked Him for our fears because those are things that draw us closer to what He desires for our life.

This prayer seemed to calm her, I rubbed her back, gave her some extra cuddles and then left her room.  I left feeling awful.  Katie has had 6 surgeries in her lifetime, and with each one, we gave her the necessary information at the right time.  I think this diagnosis hit our family so fast that we were all openly talking about it and trying to figure out our way through this valley.  It never occurred to me that my 6 1/2 year old was taking every conversation captive, chewing on it and then anxiety entered into her little heart.

Although MS is a disease that a person can go on to live a healthy life with the necessary modifications, it’s daunting because all I have is a hope for a cure…there have been great strides to help MS patients live comfortable lives…but there is no cure.  There are days that pill is hard to swallow.

There are things that go on in our home that we are very private about upon hearing the news.  We are trying to navigate how each other are feeling, how we are coping, and now how to talk about it without freaking out our children.  There are some very private fears that I have personally had and then there’s getting ALL the doctors involved to help relieve those issues.  I mean, we just recently had to call my OB/GYN because some of “those” pills had to be changed to even out some of those beloved cycles!  Who knew that “those” pills, given the right dosage and the right brand, would work together with the other medicine specifically for MS!?!  It’s stuff like this we are STILL figuring out.

Another fear is the flu.  My immune system…well, I don’t have one.  My doctor, just weeks ago said anyone close to me needed to get the Flu shot and I HAD to get one.  I go in to get my Flu shot today, and I’m told because of MS, and the strand that is in this particular flu vaccine, it may undo all my progress.  So, the Pharmacist is calling the CDC? and my MS doctor to see IF I can go ahead and have this shot.  If not, I am going to be the worst germ-a-phobe EVER!

There of course are the frustrations, too!  Like, where to eat if I want to just go eat out!  The fad these days is to be “Gluten-Free.”  However, for me, it’s not a fad, and it’s not something I can just put on the shelf for a weekend, or a day and then get back on the bandwagon.  It’s a MUST, and if I screw up, I pay severely.  Brandon and I are still navigating through that valley and there have been days I’ve just wanted to crawl into a hole and weep.

Through the valleys, there has been rejoicing!  When Katie says, “I wish God didn’t give you MS” (and YES, those words have come out of her mouth!) I say, “Katie, don’t say that!  God chose me to have MS so that He could use me to help others.  Whether that be bringing awareness, or giving Him the glory through my trials, He chose me and He chose our family.  What we do with MS, and how we handle it, is up to us.  I am choosing to embrace it and find out what God wants to teach me and our family.”  I don’t know how much she really comprehended of my soap box, but I know she’s thinking about it.

The medicine IS working.  Feeling has come back in both arms and my thumbs, index fingers, and middle fingers.  Ring and pinkies still a no go.  There are days my legs tingle, I limp, I sit, I’m fine.  I still tire quickly, but I’m learning to pace myself, and with that, it may appear to others as probably selfishness.  I’ve had to let go of that fear.  People can do with what they want with perceptions.  I know the truth.

I’ve lost 15 lbs. and this is because of the medicine, but mostly from the strict diet my doctors have me on.  I’m slowly getting to the weight they want me.  I tell people I’m eating like Jesus:  no preservatives, no MSG, no gluten, ALL fresh, straight from the deli or the farm itself!

God is good through the valleys of life.  He is FAITHFUL, CONSISTENT and GOOD

I got out and attended a wedding with my man!  I crashed afterwards, but it was a great date with him and friends:)

I’ll do anything for my students!  Red Ribbon Week 2013.  Even though I’ve got quite the expression, the 15lbs lost is beginning to show!

Praising the Lord that He worked out Noah’s soccer schedule to where his games have been at 8:00 or 9:00.  Right before the heat!  God is in the details!

Even though this is not a clear shot, I felt good enough to cheer on my daughter and watch her kill her beam routine!  For her level, I witnessed her BEST performance on beam yet!

See, GOD is GOOD!  He’s allowing me just enough strength to keep the main thing, the main thing!

A Day of Hope | Lauralbest’s Blog.

A Day of Hope

August 6, 2013 is a day that Brandon and I will never forget.  It was the day that Dr. Fresenhahn told us everything on my scans pointed to MS.  We were rushed over for another MRI only to confirm what she knew to be the case on August 8, 2013.  Since that day, our lives have literally been turned upside down.  I went from starting to cope with the numbness and pain, to being put on medicine I’d never heard of before and feeling like death.  It was like my body was, and still is a lot of the time, was functioning on the outside, but on the inside, my head felt like it was stuck in the clouds.  I felt like I couldn’t function.  I had an abundance of emotions racing through me.  I’m a smart person and I felt like nothing was clicking.  All of the questions such as the  “what ifs,” “could I have prevented this if…”  “Despite the pain and numbness, why was I feeling somewhat normal a week ago and now I’m feeling like I can’t lift my head?”  “Maybe I should have gone to the doctor sooner.  Why didn’t I go to the doctor back in April?”  However, of all the questions I asked the Lord, I never once asked Him, “Why me?”  All I could think about was Isaiah 6 where the Lord and Isaiah are going back and forth and finally in verse 8 the Lord poses this question, “Then I heard the voice of the Lord saying, ‘Whom shall I send?  And who will go for us?’”  Isaiah replied, “And I said, ‘Here am I.  Send me!”  Now , I know that the context of this verse is describing what God would do if people disobeyed him, however, I must apply to what is happening in my life today.

No matter if you are a believer in Jesus Christ or not, you were put here on this earth for a reason.  We are all imperfect creations, and each of us were given a purpose to fulfill.  Jeremiah 29:11-13 says, “‘For I know the plans I have for you,’ declares the Lord, ‘plans to prosper you and not to harm you, plans to give you hope and a future.  THEN you will call upon me and come and pray to me, and I will listen to you.  You will seek me and find me when you seek me with all your heart.  I will be found by you,’ declares the Lord.’”  I love that the Lord has a plan for us and that His plan is not to harm us.  When we pray He tells us that He will listen to us and that when we seek Him, we will FIND Him.  So, I have MS.  Okay.  This is not going to change what God had planned for me since the beginning of time.  Do I have to claim that everyday?  YES!  Do I doubt it?  NO!  Why?  Because through all of Katie’s surgeries and medical battles, I have learned that God is STILL on His throne and He is a God of details.  He is going to work everything out in a way that will bring him glory and honor so that His kingdom will be advanced.

God knew that at age 33 I was going to have a lot of BIG changes and the way I lived my life physically was going to have to change.  Has it rocked my world?  Yes!  Am I going to let MS rule and take over my life?  NO!  Are there adjustments and is my once sharp mind still in a fog?  YES!  Is God going to help me in this area?  No doubt!  Here’s why!

Our family’s journey has been one medical valley after another.  They all started when Katie had her very first surgery at 14 months old.  Through all of our valleys, God has been VERY evident.  For example, without us even sending in our resume to Oakwood, Pastor Ray knew we were looking for another church to serve through various circumstances.  We were obedient to God and the invitation Pastor Ray and Pastor Rusty offered us.  Through that move, one of the benefits, we have been in a location where Katie has seen the best of the best doctors.  Now, with my medical journey, I am just 45 minutes away from one of the top MS Neurologist in the country.  God knew our needs before we did.  God placed us in a loving church with a church family that has walked through the trenches with us.  Our church family has provided meals, cards, physical support…the list goes on and on.  I am humbled by the love we have received.  He has blessed us with deep friendships and those have taken time to cultivate, but God is so good to give us our circle of friends who cry with us, hold our hand and are simply there before we know what we need.  He placed us close to family and that has been a rich blessing. My entire family is going on the same restrictive diet I have to be on because as my sister put it, “We can’t feel her pain, but since we do a lot of holidays together, we can learn to eat what she has to eat.”  More importantly, God placed us in an environment where we could give back and serve.  We have the honor of serving an amazing God in an amazing church and in an amazing community.

God, in His goodness and His provision, placed me at a new school, in an incredible grade, with incredible teacher and administration support.  They too, are walking this road with me.  Did they ask to?  No.  However, they have been such a source of day to day strength for me.  Seeing their passion to teach, their willingness to go over and beyond helping me and their friendship has been such a blessing.  I look forward to going to work everyday because I get to do life with my team and I have the most amazing opportunity to invest in 4th grade students.  I get the sweetest smiles and the most heart felt hugs every morning and afternoon.  These precious students have no idea what their teacher is battling, they just love openly and freely.  It’s not everyday you hear people excited to go to work.  It has seriously been a lifeline for me this last month and I LOVE what I do.

This is the lens I have to look through, or honestly, the pain would take over and I don’t know how effective I would be.  I have asked the Lord to give me a verse I could claim over my diagnosis.  I keep coming back to Joshua 1:9 which reads, “Have I not COMMANDED you?  Be STRONG and COURAGEOUS.  Do NOT be terrified; do NOT be discouraged, for the Lord your God will be with you wherever you go.”  The beginning days, weeks and months of MS can be discouraging and they ARE hard.  You are given tons of medicine to try to stop the pain and get your body to stop attacking what is good.  It takes a while to get on the correct dosage of medicine, the right medicine etc.  However, through the valleys of the unknown, I knew I needed to be strong and courageous.  I don’t have time not to be.

I have learned I have to take one day at a time and I have to get lots of rest and sleep.  I have been forced to do that and I’m still learning this skill.  However, today I was given hope.  I finally got to meet my MS Neurologist Ann Bass.  She sat with us for a good 45 minutes going over my diagnosis, setting me up with the local MS chapter, where to locate a nutritionist for MS patients and even resources for MS families, children and spouses.  She answered all our questions and kept telling us that we caught this early, and as long as I follow the treatment plan, I can live a normal life…I just have to live differently than what I’m used to.  This is where the learning curve is still taking place and will for awhile.

I have to go completely gluten free and high proteins, veggies and fruits.  Absolutely no diet cokes or root beer , sweet and low, carbonated drinks and low sugars.  We learned a lot of new terms that I can’t even remember nor can I pronounce.  When I look down, I feel an awful twinge and this is just my body reminding me that I have a lesion on my spinal cord.  This is normal for MS patients.  Dr. Bass just put all of us at ease.  She is changing some of my medication and putting me on lower dosages.  Hopefully this will help the pain at school as well as help me to function like I used to.  I will see her again in 3 months.

The Lord is good and He is faithful.  I am going to learn to live with MS and I am going to be in that 80% that lives a long and happy life.  Please mark your calendars for March 1, 2014.  We will be putting together a team for the MS Walk in San Antonio.  Orange is the color that represents MS, so get your gear ready!  I will be sending out more information when it is sent to me through the MS Society.

http://walktxh.nationalmssociety.org/site/TR/Walk/TXHWalkEvents?fr_id=22530&pg=entry

My thigh this morning, September 10, 2013, from a shot injection.  My leg hurt and burned all day.  Dr. Bass is sending over another nurse to re-do settings on my autoject.  My hair also started to fall out in clumps on Saturday.  Dr. Bass said this is normal with the shots, but not to worry, everything is going to even out.

My second month of shots arrived today!  Dr. Bass agreed that for me, this was the BEST method of treatment.  It takes this medicine 6-9 months, sometimes a year, to get feeling back in arms and hands.  BUT, every MS patient is different, however, that is the normal cycle to see if there is perm. nerve damage or not.

The new meaning to “Sister Wives!”  My friends at work and some of my biggest fans!  4th Grade Team at Lamar Elementary.  LOVE these ladies!  I have lost 10lbs since this photo was taken!  Doctors seem to be happy with how things are going there:)

Notice the orange!!!  Orange is now my new color:)  You’ll be seeing a lot of it from the Best Family as we walk this road:)

I am now under this amazing lady’s care.  She was and is amazing and I left smiling because she gave me hope today!  I’m ready to begin the new medications and get started to feeling normal again!  Could not have asked or prayed for a better man to go through this with and my mom…she’s behind the camera snapping pictures and taking all kinds of notes!

Prayer Requests:

Continue to pray for energy, clarity of my mind and to regain feeling in arms and hands.  Prayer for the new medications… that they will work and we will have found the right combination of meds to get me functioning like everyone is used to seeing me function.  Prayer for my family and Katie and Noah as we all continue to adjust.