A glimmer of hope

I went to the neurologist yesterday.  The doctor gave me a very thorough exam.  I was in the exam room for almost a full hour with the doctor.  I took my devotion book in which I had written down all the symptoms I have been having.  I told him about all the symptoms, and he asked a lot of questions about Mom.  I fought back tears as he asked questions about her feeding tube, and I told him how quickly the disease ravished her body.  It was not until the end of the hour that he told me what he thought.

He said I did not have any of the symptoms of ALS, and I probably had Benign Fasciculation Syndrome.  He said everyone does not have it, but it is more common than ALS.  Benign Fasciculation Syndrome (BFS) does not turn into ALS; they are two separate things.  It is not something that will go away, and my muscles will always twitch.  He did not want to do the nerve test again because he thought it was not necessary.  He was not saying I will never have ALS, but right now I do not have the symptoms that would indicate I have ALS.  I need to get my blood results from by regular doctor to see if they checked my thyroid and another test to check my muscles.  If my blood was not checked for those things, I have to go Friday and get more blood work done.  I told him the reason I wanted to see him is because he is a Christian. 

He did want to rule out MS (Multiple Sclerosis).  So Friday afternoon at 4:45 p.m., I have to have an MRI on my head.  He was telling me things they typically find that aren’t a big deal to prepare me if they found those on my brain.  I told him there isn’t anything up there anyway (in my head).  He asked me if I was getting weaker, and I told him I thought so.  I told him I could not objectively assess what was going on because I know there is something wrong, and I am very in tune to my body.  Basically, I was telling him I over analyze everything.  He said a phrase I had never heard before.  He said, “You know there is an elephant in the room.”  Meaning, I know there is something wrong, therefore it may seem bigger than it really is.  He wants to see me back in three months.  So in December, I have my next appointment.

Another first

On September 23^rd, Mom and Dad would have celebrated their anniversary.  It’s just another first and many more to follow.  I did not call any of my sisters to ask them what they were going to do.  At first, I thought I would send Dad his favorite cookies.  Then, I thought I would get the kids to send him a card.  But when time ran out to do either of those, I thought I would just e-mail him a letter.  I wrote him and just told him what was going on with the family and said, “I love you.”

U  What can you do to make the many “firsts” easier for your loved one?  U

He’s prepared me

Tomorrow, I will go to the neurologist.  I am ready.  I have had a lot of time to think about this, and I am ready to tackle it head on.  I know I will need the Lord’s strength to get me through.  Nancy asked me if I was nervous about tomorrow, and I told her, “No, not yet.”  She told me not to be.  Even as I sit here, my tricep muscle in my left arm is twitching.  It has been twitching throughout the day.  Since muscle twitches are so common now, I don’t even notice them much because it is so frequent.

During the prayer meeting, I asked the teachers to pray for the doctor to have wisdom.  A teacher asked if the prayer request was for me, and I told her everything that was going on.  She made some comment that I was needed to help with the task ahead of “teaching” the students (meaning, there was much work to be done with instilling Jesus in the kids.)

ALS Walk-a-thon / Do not be anxious

Jennifer told me there was a walk-a-thon in Atlanta to raise money for ALS.  She told me she and a friend were going to walk, and she asked me if I wanted to do it as well.  She was going to get the information to me so I could sponsor her if I decided not to walk.

U  Are you willing/motivated to help raise money by being in a walk-a-thon to find a cure for an illness?  U

Yesterday, I sat on my front porch and prayed I would not be anxious about next week’s doctor appointment.  A flood of thoughts again went through my mind.  Would I be strong?  What assisted help from the doctors would I want?  Do I want a trach or a feeding tube?  I know I don’t want to live with a trach, but I guess I won’t know until it is staring me in the face.  I thought about the issues of me being in a wheelchair and how long they would let me work.  How would I tell the kids at school, and what should I tell them?  How would I tell my sisters and my father?  Would I be able to tell them in person?  When would be the appropriate time to tell them?  Should I take the family on a last ditch vacation like to Hawaii and how quickly should we leave before too many symptoms hinder the vacation?  How would I pay for it?  I think one time I even thought about being okay about having the disease.  Where would I sit in my wheelchair in church?   I thought about the church having to deal with a terminally ill person and people pulling together and helping out with meals and other things.  I also thought about how I would enjoy sitting on my front porch with a blanket over my legs while in my wheelchair. 

My fourth toe on my left foot was pulsating.  I could feel the pulsation run down to my toenail.  It did this all day.  It kind of reminded me of it being numb, but it wasn’t.  I have had tingling on the outside of my left foot also for a couple of days.  I don’t know if it is from my shoe or not.  Today, on the outside of my left ankle bone, it started pulsating as well.  These new symptoms brought on a flood of thoughts.  I got my calendar out and thought I would look when the twitches started compared to when I hurt my back.  I thought maybe all of these symptoms started after I hurt my back.  Maybe these symptoms were because of my sciatic nerve.   Well, I was wrong!!

Next year

I have already begun to pray what I am going to do for the next school year.  Then I catch myself and wonder if it is really going to matter.  If I do have Lou Gehrig’s disease, will I be able to teach?  Do I want to coach next year?  The new school will probably be complete by December of the next school year.  It will be so exciting having a new gym, and a new school.  What does Jesus want me to do?  My body continues to twitch, and I have had a burning sensation in my left calf muscle for three weeks now.  I woke up this morning and my right calf muscle just hurts.  In two more weeks, I will go to the doctor.  I have been praying for wisdom for the doctor and for myself.

I haven’t been talking with Paul about things lately.  To me, he’s not going to accept it until he hears it from the doctor.  Fluid has been pooling in my hamstrings for no reason this week, and I have had Paul rub my legs.  I mentioned to him something is seriously wrong, and I was going to see the neurologist in two weeks.  He couldn’t understand about my legs burning.  I told him that was the best word to describe it.  I showed him where I have been journaling about my ailments in the back of my devotion book. 

A new fire

There have been so many things bombarding me lately that have to do with my impact on the lives of my students.  I also within the last week watched Mona Lisa Smiles.  A school teacher poured her life into the college students she taught, and the movie showed the impact she had on them.  This summer, I watched Emperor’s Club.  It was about a teacher and the impact a teacher had particularly on one young boy.  The teacher did not know the impact he had on the young boy until the boy was older and told him so.  The grown man even asked his teacher why he never gave up on him.

My perspective has changed my life.  I’m not totally changed yet because I haven’t been told I have Lou Gehrig’s disease.  I enjoy seeing a chipmunk at school that I named “Dasher.”  I watch him dash in and out of his hole in the ground and scamper around.  I gather him acorns and leave it by his hole.  Just watching God’s creation at work brings me peace and tranquility.

 

I sat on my front porch again the other night and felt the Holy Spirit speaking to my heart, but I did not hear Him say anything.  I just felt my heart pounding.  Maybe it was because I finally sat and listened, something I do not do much at all. 

Tuesdays with Morrie

Paul told me he saw a movie on TV I needed to see.  We went to rent it, but it was already checked out.  We went to two stores that night to buy it, and neither one had the movie.  The next day Paul went to another store and found the movie. 

The movie was a very hard movie to watch because it was about a man who had ALS (Morrie), and he ended up dying at the end of the movie.  His former student came to visit him each Tuesday, and Morrie taught him many life lessons.  Morrie slowly started to deteriorate, and it reminded me of watching Mom lose the ability to do things.  He struggled to hold his glass to drink, he was unable to drive, and he needed people to get him up and down out of a chair.  I think one of the hardest parts to watch was seeing him crying in bed when he dropped his pencil.  He thought of something he wanted to write down, but he could not pick up the pencil.

If Paul was not in the room, I would have openly lamented out loud.  It wasn’t a cry like you have when you watch a sad movie and have tears in your eyes.  I was crying, crying.  One time I let out a noise as I was crying and stopped quickly because Paul was in the room.  The movie flooded me with so many emotions and memories of Mom, but I was glad I watched the movie.  I told Jennifer and Jamie last night, I think they should watch it.

“I love you” (part II)

I called Dad about two weeks ago, and he told me there was something he wanted to tell me.  He then got quiet.  He said I was the first one he had told, and he was going to tell all the girls.  He said, “You know that I love you very much, right?”  I answered, “Right.”  He said saying I love you was not something he said very much, but he wanted me to know he did love me very much. 

He said when he grew up he never heard that.  He said he told Mom he loved her at special times and that was something he did not say much.  He said I degraded the use of the words like I said it by ending each conversation with, “I love you.”  I told him I meant it when I said it, and I also said that to Paul when we ended our conversations.  Not to degrade the words, but for it to possibly be the last words I tell Paul in case I die that day.

I told him as I was growing up, it would have been nice to hear him say that, but I never doubted whether he loved me or not.  I could tell by how he treated us, he loved us.  He asked me if it made me mad, and I said no.  I told him it was not going to change whether or not I said it.  He told me he was trying to get his life together.