In Their Shoes

Most of what I’ve experienced is for the benefit of others. I’ve reflected on my current pain and quest to find what’s wrong. I have walked in the shoes of those who believe they have a terminal illness, and I understand that they constantly grapple with complex symptoms.

The long wait for my diagnosis is challenging. Other doctors seemed they didn’t care or care enough to help—the list goes on. At least I have drugs to relieve my pain. 

The bottom line is compassion. When a person is facing illness, show empathy. We have no idea what they’re going through until we’ve walked in their shoes.

U Can you show compassion for those with an illness, disability, or disease?  U 

U Have you wondered what it’s like to walk in their shoes? (We should be thankful for the little things.) U 

 

Ministering to PALS and CALS (part II)

Some ALS patients choose to be on a ventilator to help them breathe. Being on a ventilator can extend patients’ lives past the average of 3-5 years. However, doing so could be costly and a possible burden on families. One lady had been on a ventilator for twelve years and another man for fourteen. They have the best attitudes and lead good lives despite the negative aspects.

Some people I follow on Twitter, Facebook, and blogs use special communication devices. One woman still has her voice and uses voice-activated software to speak to her computer and type words. Many people with ALS (PALS) can no longer use their hands due to paralysis. One man pecks the keyboard with his middle fingers, while several PALS use computers that track their eye movements to write.

I joined an ALS Forum and posted two chapters of this book weekly to help people now. My posted tread is located under the Past Caregivers (CALS) section. CALS (caregivers of PALS) check this section for support and often have many questions because of a PAL in their care. I get excited when a CALS caregiver leaves a nice comment on my thread. It’s rewarding to see I may be helping someone now, rather than when my book is published.

Ministering to PALS and CALS (part I)

Several people on Facebook ALS groups have invited me to join. Most people are there to support one another. Some are PALS or family members, while others joined because a loved one died from ALS. Still, others participate to raise awareness of the disease or to raise funds for a cure. 

I follow a PAL on social media who's a Hospice Chaplain but resigned because he, too, had ALS. These people grew on me—I view them as family, though we haven’t met. We share a bond and a connection that reminds me of the Christian body of believers.

The results

I went to get my blood work first on Friday. The receptionist said she would call me on Monday with the results. I then went to get my MRI. He said he would send the results to the doctor Monday, so however long it takes the doctor to read the results is when I will find out.

I looked up MS on the internet this past weekend to try to learn a little more about it. I don’t know if everything is okay. I may not have ALS, but my muscles are not the same. So maybe I do have MS. I thought about him telling me the results over the phone meaning nothing was probably wrong. He could also call today and want me to come in because something is wrong. He was adamant on ruling out MS though. Hopefully, I will find out today and be able to move forward.

Evelyn was not very happy with me Friday. We needed her to pick up the kids, so they would not have to go to the doctor’s office. She asked me what I was going to the doctor for, and when I told her she said, “Don’t hide things from me.” I told her I had not said anything to her because I had not even told my family yet, and it was not the right time to tell them. We have had a lot going on in our family lately: Dad losing his job, Mom dying, Jamie losing her baby, and Aunt Jackie getting cancer.

Last night, I called Jennifer. I wanted to know how the ALS Walk-a-thon went. She told me she already raised $2,500, and I had not even sent her my check yet. I wanted to tell Jennifer what was going on with me. I knew out of all my sisters, she would be able to handle it without me knowing the results. The first thing I told her was I did not want her to be mad at me. She asked me how long I knew. I told her since the beginning of May. She understood and said she would have done the same thing. I was glad to finally be able to tell her. I told her I would find out the results this week and would call her. I also told her not to say anything to Dad and Jamie because I would tell them this weekend when I saw them. I will also call Joann and tell her. The tricky one is whether to tell Nana. If it is just BFS, I probably will not tell her. If it is MS, then I probably will wait a little. She worries so much and lost weight when Mom died. She needs to get strong.

The wait has gotten a lot harder because it is Tuesday around 11:00 a.m., and the doctor’s office has still not called. It just leads me to confirm I have MS. If the blood work would have been normal, they would have already called me. They are probably getting the MRI and checking it out thoroughly.

I finally called the doctor’s office either Tuesday or Wednesday to ask them the results of my blood work. They called back and said the blood work was good. She mentioned something about the B-12 and did not know what he would do about it. I started taking vitamins hopefully to correct the B-12. I called back Friday to ask if they had the results of the MRI. I told her I would be out-of-town and for her to call my cell phone with the results, so I could tell my family in person when I saw them this weekend.

I told Jamie as we were eating dinner, once I got to St. Simons. I brought the subject up by asking her how I should tell Dad and with what details. She suggested I not mention about the MS and that I got a MRI but had not gotten the results. I told Dad, and he was fine. He just wanted me keep an eye on it since Mom died of ALS. I also called Joann and told her while I was on St. Simons. She could not believe I went through that without being able to tell them. It would have added too much stress on my family.

Yesterday, October 18^th, I finally got the phone call I had been waiting for. She was sorry she had not called, but the MRI was read and was fine. I called Dad, Jamie, and Joann, told them the news then went to sleep. The one scripture I read in the last couple of days was very relevant: “I know the plans that I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope. In those days when you pray, I will listen. If you look for me in earnest, you will find me when you seek me.” Jeremiah 29:11-13.

U Are you letting God be your refuge and your hope? U

U Are you relying on the doctor’s time frame in getting the results to you? (DON’T!! I put myself through too much stress assuming things were wrong because they did not call when they said they would!) U

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.

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. 

The appointment I have been waiting for

I called and got the neurology appointment I have been waiting for.  The lady told me it would be in September for new appointments.  She told me I could use another doctor.  I told her he was a Christian doctor who had done a previous test on me, and I wanted to see him.   I also told her Mom had passed away from Lou Gehrig’s disease, and I was having a lot of muscle twitches and wanted to get things checked out.  The appointment is scheduled for September 29^th.  That date cannot come soon enough.

U  Are you realizing the difficulty a person goes through as they wait for their prognosis?  U    

Standing still in time

Today was really strange.  As I was riding back from the movies, I started thinking about everything that has been happening to me.  I thought about my kids then felt peaceful.  I noticed the cross on a nearby church pass through the direct sun above then a dove flew over my car.  The next few minutes were very strange, like I have never experienced before.  I really can’t put it into words because there are no words in the English language to describe it.  If I had to explain it, I would say that as I was driving it was as if everything was standing still even though it was moving.  I was driving, but I really was not there.  It was as if everything stood still and all was quiet.  This continued even after I got out of the car, so I went out to the front porch to sort things out.  I sat down in the rocking chair to think, and then it was okay.  My next thoughts were, is this it?  Am I going to die today, this way?

My head sometimes has felt as if it were numb over my left ear.  When it happened before, I can’t remember where it was that was numb or how long ago this happened.  When I am in the car and the air conditioner is blowing the air near my ear, my ear feels sensitive to my hair touching it.  I am going to see a doctor next week, about a strange popping that I has been happening in the left part of my neck, as I reposition my head on my pillow at night. 

I will bombard him with all the other crazy things that have been happening to me, and I will ask for guidance as to where I should go from here.  I guess I should see a neurologist and maybe get a cat scan.  I would just like to know what is going on, and I may not get the answers I want right away, but hopefully I will. 

My neck has been real stiff today, my skin has been itching a lot in different places, and I seem to have a lot of gas lately.  Basically, I am falling apart.  Ashton is sitting next to me and wants to read what I am writing, and I told him he couldn’t.  He did not need to know what I was writing about .

If this disease is going to take my life, then I am going to be proactive and make sure the spiritual things I want to teach my kids will be accomplished.  Ashton was watching baseball on TV today and was speaking as if he wanted to be a professional baseball player.  I told him whatever he did he would have to do it as unto the Lord.  He noticed how one player threw his bat and helmet down, and he made a comment about it.  I told him a lot of young people were watching that player, and he needed to be an example.  I told Ashton even if other players were doing something wrong, he should not jump in.  I am also trying to be sensitive when the kids ask me if I can do something with them.  Last night, it was Ashton wanting to play UNO Attack while I was typing, so I stopped and played with him and tonight it was Lauren not being able to get to sleep.  I took my laptop onto my bed and typed in there as she lay down next to me.

U  How can you pour your life into your children/grandchildren?  U

U  Have you instilled Jesus in them?  U

Symptoms

 

While the muscle twitching has still been going on for over a week, I have noticed my foot occasionally will catch on the pavement as I walk.  I just kind of catch myself and not fall.  Today, I had to scoop ice cream for a birthday party.  The ice cream was very hard, and I had difficulty scooping it as anyone else would.  My arm though was exhausted.

After the disease would leave my arm paralyzed, I thought about wearing a sling on my arm instead of letting it dangle down.  As I am writing this though, I have not been to the first doctor but just know that this is my prognosis.  I thought about this upcoming volleyball season and whether or not I will be able to finish it.  I also wondered whether or not I will be able to finish the school year and what the kids at school will think.  I was just flooded with thoughts today.  I thought about my sisters and Dad wanting to come up and see me and when I should tell them.  I thought about my shower and having wheelchair access.  I thought about how quickly ALS would ravish my body, and how I would not be able to run my fingers through Ashton’s hair.  Yep, just me and God; that’s all I will have.

A note from a friend

As I was waiting to go into church Sunday, I read a card I received from Nancy.  In the card, it stated the healing scriptures I have been dealing with may be for my own benefit.  Now that I look back, it was for me.  She also wrote and told me He (the Lord) may use this time to force others to grow closer to Him in a way they never would have.  The Lord already knew what a stressful year it had been with starting a new business, teaching full time, coaching, and trying to keep on top of being a mother and wife.

I decided yesterday to tell Nancy I thought I had Lou Gehrig’s disease.   I knew she would pray for me and not tell anyone. When I told her, she said she would pray for me and not tell anyone.

At the bottom again

I went through a series of events that sent me once again to rock bottom.  I think this was the lowest moment in my life.  One thing concerned my job and possibly not getting to coach my varsity team, but the other was even more devastating.  Friday night, I came to the realization I may have the same disease Mom died from.  I am so tired of crying.  I am ready to be on the mountain top again.  I’ve been having a lot of twitching in my muscles lately.  A little over a week ago, it was a twitch in my right calf muscle.  For the last week, it has been a twitch in my upper arm.  For two days, it was pretty much been on and off all day.  As I have been reading stories of people and their struggles with ALS, muscle twitching has been a symptom in a lot of cases.  I will also have a random twitch here and there in other body parts.

I basically accepted this was the case and broke down Friday night.  So many thoughts ran through my mind:

*How I got what I wanted about being with Jesus.

*My pride in occasionally thinking of the muscular body I had, and now it would be wasted away.

*Paul having to deal with three businesses and me.

*Thinking about the things I would find solitude in.

*My job.

*My church having to go through what Mom’s church did.

*When would I tell my sisters and Dad?

*Would I able to be as strong as Mom was? 

I thought it was too early to tell my family because I did not want to stress them about whether or not I had ALS.  I do wish I could tell them, so they could pray for me.  But for now, Paul is the only one who knows.  At school and church, I just say I have an unspoken prayer request.

U Are you looking at the Lord or your circumstances?  U

“Don’t touch me”

Mom said this to me a lot of times.  Someone told me there was a disease she may also have where they cannot stand to be touched.  When I would lean her over with her legs hanging off the side of the bed, she did not want me to touch her.  She would tip over if I did not hold her up.  Another time, I had my hand on her shoulder praying for her when I thought she was asleep.  But, she was not asleep and said, “Don’t touch me.”  I would pick up her arms and legs and move them around like Angie told me.  One time I was rubbing her hands because they were blue and again she would say, “Don’t touch me.”

One thing she enjoyed was having her hair brushed.  One time she asked me to brush her hair for her, and she said, “That feels good.”

U  Can you offer to do small things that would bring your loved one some comfort?  U

U  Are you realizing how hard it is on your loved one if they are experiencing the same thing, because they want to be touched, and they also know their loved ones want to touch them?  (Mom may even have sucked it up and let us touch her at times even though it bothered her.)  U

I don’t want to know anymore (part II)

Mom is not eating or drinking orally for now.  Again, Mom had to sacrifice something.  This time the joy of being able to taste food especially her favorite foods.  Imagine craving a pizza, a milkshake, or seafood, and now you can’t ever satisfy that craving again.  Mom loved a cup of Coke without ice.  The doctor said she can eat or drink as much as she could tolerate.  Joann said before the surgery her eyes were sunken, and she did not have any color.  She said she looks much better now, and if Mom did not have the surgery she may have already died.  The surgery has bought her some time.

U   Are you being sensitive concerning not eating or drinking around your loved one if they can no longer eat or drink?  U

Dad is still figuring out what to do with Mom’s care.  Joann said if Dad sends her to a Hospice facility, he might as well go ahead and drive in the nail because she will give up.  She said Mom loves for Dad to take care of her.  This is funny because she did not want him to at first or at least she did not want him to stay home from work. 

Joann told me the small details like: Mom liking to suck on the corner of a wet rag; that she could not control her head any more, and restroom issues.  One of the funniest things Joann told me was Mom said she has an emergency.  The emergency was Mom wanted her head to be scratched.  I just think that is so cute.  She said Mom still has her spunk.  She told me Mom was concerned about Joann leaving her purse here and there while at the hospital.  Joann said her purse was attached to the wheelchair, and if someone wanted to take it then they would get a whirl.  It is funny Mom, in her weak state, would think of Joann and use such effort to speak with her weak voice.

Joann said she did not know if I would be able to handle Mom by myself.  I have two bulging discs and arthritis in my neck.  She seems to think I will mess up my back, which makes me even more determined I can do it.

U  Are there small details you can pass on about assisting your loved one?  U

"God can do it again!"

This particular day would turn out to be even harder.  Mom’s allergies had not been well lately, which made her have a lot of drainage.  She said the back of her throat was raw from all the drainage.  When she started coughing, I had to bring her a cup of water to try to settle her cough.  That didn’t always work, and I would have to get her a cough drop.  My sisters told me from their previous visits Mom started choking on her food.  Jennifer told me one time she thought she was going to have to do the Heimlich maneuver on Mom.

U  Do you know the Heimlich maneuver and CPR in case you need to use them?  U

That night as she was watching television, she started to have one of her coughing attacks.  Nothing seemed to work.  She leaned forward and dropped the cough drop out of her mouth.  She looked at me with despair and even though I tried not to panic, I did.  I saw she could not get her breath.  I looked to Dad that was sitting there the whole time, and I motioned for help.  He got up and lifted her up to walk outside on the porch so she could get cooled down.  She cooled down and got her breath.  She told me because I panicked, I made it worse.  That night before I went to bed, she apologized if she made me upset.  I don’t know if that conversation was brought on by Dad or not.

U   Are you remembering it is very important to your loved one for you to remain calm during stressful times?  U

I lay in bed that night going over all the events of the day and cried.  Another seed of doubt came into my mind.  I read my devotion for the night and the previous night’s devotion because I had not read it yet.  After I read both devotions, I skimmed through other devotions I had already done.  I stopped flipping through the book, and the book laid open to the devotion for February 2^nd.  I read the last few comments at the end of the page which read, “Write down one specific moment when God delivered you or gave you a miracle in some way, and thank him.  Then remind yourself that if God did it before, He can do it again!”  The title of the devotion was, “God Can Do It Again!”  That was all that I needed to read to sooth me and to give me reassurance.  I now had 110 % confidence He would heal Mom.  He was telling me to wait.  All I had to do was trust Him.

Before I left for the weekend, I decided to tell Dad briefly I thought Mom was going to be healed.  He listened and then replied, “We’re waiting.”  This in-depth answer, in a way surprised me a little.  My parents and I have never really had serious, in-depth conversations.  For example, when it came time for me to learn about the birds and the bees, they sent me to a weekend church retreat that was called, “Birds, Bees, Wees, and Human Sexualities.”

My parents don’t open up and talk about their emotions.  When we found out Mom was diagnosed with ALS, I became concerned.  I just did not think Mom would open up and share her feelings with Dad.  She had a lot of close friends, but I found out they “bounced” around bringing the subject up but did not discuss it directly.  So, I decided to write Mom a letter.  I sat on my front porch and poured my heart out to her.  It was a very difficult letter to write.  I told her I did not want her to bottle her feelings up and she can call me anytime to talk no matter the time.  She has not called yet, and I’m not expecting a phone call either.   

Fuller, Cheri. The One Year Book of Praying through the Bible. Wheaton:        Tyndale House Publishers, Inc., 2003. February 2.

Signing Dad’s card

Mom had not signed Dad’s Valentine’s Day card yet.  I got the card out of the bag and brought it to her.  She said she did not know if she would be able to sign it.  I put the pen into her hand and held the card for her.  We tried once and it did not work.  We tried again by repositioning the pen in her hand.  It took a lot of effort and looked like a kid’s handwriting, but she did it!

We brought Mom a pretty Valentine’s bouquet of cookies from my cookie shop.  The cookies were on sticks and decorated beautifully in a mug.  I knew Mom might have a hard time swallowing the cookie. 

While we were there, my kids wanted to have a tea party with her.  Lauren brought down her ceramic tea set, and each one of my kids had their own individual tea party with Mom.  We put tea into the tiny cups and broke up small pieces of the cookie.  I took a picture of Mom during the tea party; she was wearing her Georgia Bulldog sweatshirt.  She could not really eat much.  Mom said the cookies were, “cakey.”

U   If you are the ill loved one, can you give small amounts of quality time your loved ones need, even if you are worn out?  (This was the last quality time my kids had with Mom.)  U