I fell about three weeks ago now.  It was a Sunday morning, and I was sitting down at the piano at church.  I think I was in the middle of falling already, and as I was in the sitting position, fell, taking (and breaking) the piano bench with me.  The piano sets on a stage, so I fell off the stage, hurting myself.  Now, I didn't feel particularly hurt that day, but I haven't been able to get through the pain yet!

That service at church turned out to be very touching, as those in attendance gathered around me, crying and praying.  I felt so very blessed to be cared about by this congregation.  It was just nice.

I said I haven't been able to get through the pain.  It's been rough.  As I type this, the only thing I really want to do is climb in the bed, but it's not even 7 o'clock yet, and so here I am.

I think if anything good is coming out of my pain lately, it is that I know people care and are praying.  It means a lot.    

I want to make a difference.  I mean a real, meaningful difference.  I don't yet know what that will be, or what it may entail, but I want to use my remaining time on earth wisely.  Pray for me that I will soon know what that is and I that I will have the courage to do whatever God has in store!

Years ago, my husband and I decided to take our children on "dates".  We each take our kids just by ourselves from time to time.  
With moving to another state a few months ago, and because of my not being able to drive myself...and not having a handicapped van until recently!, (the list of excuses goes on!)-  we hadn't been doing these dates.
This past Friday, I was able to go with my oldest son, downtown.  We rode on my power wheelchair (he walked part of the time) to pick up some food and eat at a park.  We were able to spend three hours together just enjoying our time.
I will be taking my youngest son and then my daughter this coming week.  We will go to a nearby city, do some shopping and have lunch.
It is so nice to be able to do this again.  I pray my kids will feel free to open up and talk about life and things that may be bothering them.   

I have been hurt by much in life, but this past weekend has taken the proverbial cake. I was informed by a long-time "friend" that "ALS has changed your personality. You're the not the friend you once were. It's sad."

I think the worst thing I read in all that, was that ALS has changed me. Yes, I believe it has, but it's been for the better!  I don't let the small stuff really bother me. So many things in life really don't matter. I thought friendship did.  THAT saddens me.

Living in the new place that we do, I am able to get to the beautiful Oregon coast quite often.  I love it!  It is so beautiful, so very peaceful, and well... to a Florida girl, the ocean is a balm to my soul.  I love seeing the waves crash on the rocks here, I love hearing the ocean roar.  I love seeing the sunset as if God has painted me a masterpiece!  I can't tell you if I love the sunrise here or not as I doubt I will be up to see it, and it won't be the same as when I lived on the east coast where the sun "rose in the east"... but somehow, I think it would be marvelous too.  I prefer sunsets though, and it truly is a beautiful sight over the ocean with the mountains in view.

God is forever reminding me of just how much He loves me.  It's all around you!  He loves you too!  Look at the ocean, the mountains, or wherever you live... look for evidence of His existence and just how beautiful His creation is.  You are a part of it!

Today I got my appointment to establish care here in my new state.  It will be towards the end of next month.  I wasn't prepared for the emotions that came with that appointment!  I felt something like I did when I was first diagnosed.  I just felt sad the rest of the day.  I am not sure why.  After all, I've been through this.  I am feeling increasingly weaker in my arms.  Especially at night, when I tend to type these blogs, I can tell my right arm is much weaker than it was just a month ago.  That scares me.  So, I guess, I am fearful of what I may find when I go to this appointment.  Sigh.... It all begins again.

How do I give in?

I was talking to a dear friend by facebook tonight who asked me how I was feeling. I responded that since it was her, I would be honest.  I've just not been feeling well at all lately, but that is to be expected.  Oh, I am not depressed. I truly AM happy in those pictures I post, but I am fighting with someone through all this.  MYSELF!  

My arms are getting much, much weaker and to lift my food to my mouth feels like bricks.  To lift my drink is getting so much harder and well... I just haven't found the way to let go and let someone help me.  I am losing so much of myself- it feels like watching myself slip away and I don't like it. Who would?! 

I am starting to see what babies must feel like when they realize they can do something for themselves but their Mama wants to do it for them a little longer.  Only, I will not get better at holding my "bottle", I will just get weaker until I can't possibly lift it at all.  It greatly saddens me that I will become so dependent on those around me.  It's as if I am going backwards in time, to when I was but an infant.

I need help but how do I let others do so? I just don't know.

My Mama leaving after being with us nearly four weeks was hard!  I have really missed not having her right there with me. 

I do however have excellent news!  Someone, a total stranger no less, donated, yes DONATED a handicapped accessible van to us!!!  This is still amazing and overwhelming to me!  It was about a 14 hour drive from our house, so off to Idaho we went.  The sweet woman that gave the van to us suffered the loss of her husband just a few weeks ago.  He is now free from ALS, in heaven.  I feel like this woman will now be my friend for life.  What a blessing she has been to me and to my family.

I am typing this blog from a motel room.  We will be back home tomorrow night.   I will be thrilled to be back in my bed.  I am physically exhausted from this trip but emotionally, so very overwhelmed and full of gratitude!

God is so good!

My Mama has been visiting for the past four weeks. As of tomorrow, it comes to an end.  It saddens me to see her go.  I can't help but panic a bit as she's 81 and me? Well, I'm dying.  I feel as if I won't see her again here on this earth and that gives me great sorrow.  

I can thank God though that I have something else, something AWESOME to focus on!  Someone, a complete stranger, is donating a van to us!!!  We will drive about 14 hours to pick it up in Idaho.  I am so grateful, so incredibly overwhelmed at how God loves me.  The van belonged to a man with ALS, who is now free of it, in heaven.  I heard of it through a group on facebook.  I am just amazed!  God is so good.

So, as I cry tomorrow as I leave my Mama at the airport, I will thank God for His goodness to me!  

I am so very happy that my Mama is visiting us.  From the moment she got here until she leaves, she will have been with us one day less than 4 weeks.  That is such a nice visit and yet, I am fearing the day she leaves already!  She's been here over a week now, and I already feel like I am in countdown mode.  I hate that I do that.  I need to just enjoy each moment we have.  

My Mama is so precious to me.  I was always very close to my Daddy and those who know me well, know I was a typical "Daddy's girl."  That my Daddy has been in heaven since 2008 still does not seem real.  My Mama is responsible for me being so close to Daddy. She taught me to be close to him.  I have done the same with my children, and my own daughter is the kind of Daddy's girl I was.  It's so sweet to me.

I digress.... my Mama is also very close to me but I must say it has become more so in the past few years as I have grown up, have children, and especially since Daddy died.  My Daddy and I used to talk daily, sometimes several times a day.  I now can't imagine not talking to my Mama daily.  I hate the days where I forget to call or something happen that I can't.  It bothers me greatly, because I know that one day either she will go on to heaven, or I myself will make it there first.  I joke with her when she speaks of her age and that she may not have many more years, that I guess we are now in a race to see who sees Daddy first!

I really do need to savor the moments she is here... not worry about the day she flies back home.  I can't help but wonder though the next time we see each other, how much farther progressed the ALS will be.  Will I even be able to hug her? Talk to her? Respond to her?  Oh how I hope so.

Being told I have a terminal illness, I went through and continue to go through a lot of emotions.  The worst time (so far) was when I was first diagnosed.  I have of course, had a good bit of time to process it all.  Other people, not so much....

We are 6 months in, just about, at our new church.  There is a man who came up to me last week with tears in his eyes.  His first thing to say was, "Some things you know, you wish you could just not know."  He explained he had been researching Lou Gherig's disease (ALS) and then said, "it's terminal, you know!"  O.k.  for just a moment, I confess, the comic in me wanted to say, "No!  I never knew that!", but I of course did not.  I realized this man was deeply touched by learning that fact.  He said, "we don't want you to leave us.  We love you."  Wow.  It hit me.  It hit me hard.  To see my illness through someone else, someone who has just known me a few months, took me a back.  You see, I know my illness affects people other than me, but to see someone with tears as if they had been punched in the gut, got to me.  

I went home and prayed- not for me- but for this man and the others like him who are being affected by ALS through me.  May God help us all!

A Life Overwhelming Sometimes

     Yesterday evening, I had my first ever Neurologist appointment, since living in Oregon.  We were very pleasantly surprised with him!  I felt like he really cares.  He is getting me set up with Oregon State University in Portland- their neuro-muscular specialists there. (about 4 hours from our home). It will probably take a couple of months before I have the actual appointment. 
     Going through the tests again, the strength tests that every neuro seems to do, just overwhelmed me. It reminded me of how very weak I have become since I was seen in Mayo back in the summer of 2013.  Reading this doctor's report just seemed to break my heart again as I read the words "Motor Neuron Disease", etc. etc.  It just overwhelms.
Last night as I went to bed, I reached over for my husband's t-shirt, to grab a hold of it as I've done so many nights before.  I realized I couldn't grasp it anymore.  I had to sort of stuff a bunch of the shirt in my hand to have any sort of grasp on it.
     My mind raced back to being a 4 year old girl or so, and sleeping in between my Mama and my Daddy.  I would always grab a hold of my Daddy's white t-shirt and fall asleep, blissfully unaware of any danger that might be lurking.  After all, my Daddy would protect me from all harm.  I cried thinking how I was losing the very basic ability to hold something in a grasp or a pinch.
     Life seemed to overwhelm me yesterday and last night, but I am back today.... happy that my Mama is here with us for nearly four weeks!  It is so good to see her!

What a wonderful two days.  Last night and this morning, we attended a fellowship meeting at a sister church.  It was great to hear preaching and see the new friends again that we've made in the six months we've lived here.  

People have been so nice to us here and for that, I am so grateful.   We've been through feast and famine where fellowship is concerned.  When we lived across the world as missionaries, we had some close friends, fellow missionaries that we would see at least once a month, many times more.  We moved to the states, and were in a place where there were not many other like minded people to fellowship with, and so we felt isolated, alone at times.  It's so nice to be in a place now where there are many other people with like beliefs to worship with from time to time and have a fellowship that beats anything the world has to offer!

My husband and I grew up in an area where there was always a youth rally, mission rally or fifth Saturday meeting to attend and know that you weren't the only ones who believed as we did/do.  It's now so great to have that kind of fellowship for our kids!  I need that more and more.  It reminds me that people are truly praying for me.  It calms me even.

One of my sons asked me tonight why I am always so tired.  When I said, "honey, I can be tired just in a little bit now", he asked did that mean I was dying quicker?  It saddens me that my kids have such thoughts in their minds.

I tried my hardest tonight to play with my kids- I even played action figures for a few minutes with my 10 year old son.  My 12 year old wanted me to read to him, (and he's the one who asked why I'm so tired), but by then, I really was too tired and it was his bed time.  I promised I would try to REMEMBER to do so tomorrow evening.  

We have a church meeting to go to tomorrow night and the next day.  I know it will wear me out but I look forward to seeing fellow Christians this weekend.  It strengthens me.

No, I will still be tired, and I'll still be weak physically... but mentally, spiritually, I will be nourished.

January 12, 2011

Four years ago today, I had surgery to remove uterine (endometrial) cancer.  I have had a couple of "scares" since but all turned out o.k.  I should be on the count down now to one year from today when I can shout it from the mountain tops that I am five years cancer free. That is the major marker for all cancer patients.  Somehow, now having ALS, has just made that less important.

Of course, I can still find something to be thankful- at least I don't have BOTH cancer and ALS.  

Left, Right, Left, Right?

Last night I asked you to pray for me because my left side has weakened.  Just a few minutes ago, I was lifting a glass of water with my right hand and almost dropped it.  It was such a strange incident but it is as if my right arm is saying "bye" while my hand stays o.k.  So strange.  

I play the piano for church and so I really am praying that I can continue to do so until we can get someone else to play.  My teen daughter wants to learn and I have been teaching her some.   We need to step it up a bit I suppose.

Pray with me that the Lord sends our church another pianist and that my progression slows back down.

 

Would You Pray?

Dear Reader,

Tonight I simply ask you to pray for me.  My left leg has been getting weaker and weaker and tonight is in much pain. Actually, I was in a lot of pain most of the afternoon and evening.  I took my pain pills and they have done little to help this time.  

Now, if you look up ALS, you may read there is no pain with ALS. I can assure you though that I know many folks with ALS that do experience pain on some level.  

Anyway, what prompted me tonight to write this post, is that right before I got online here, I picked up the t.v. remote to watch something I had taped.  I realized it is much heavier than it was this morning even.  I am losing abilities in my left side and let's be honest.  It scares me.  I'll adjust. I know I will, but with each change comes a bit of overwhelming emotions.  It is much like watching myself slip away and I don't like it.

So, thank you for praying.  I appreciate it.

God Cares! He Really Cares!!!

With ALS, many times you also have something known as Pseudo-Bulbar Affect.  You may have seen a commercial recently about PBA, letting you know that those with it aren't crazy but have a neurological disease that causes uncontrollable crying or laughter.  Yes, I too have PBA.  It normally affects me by uncontrollable crying that can come on without a moment's notice.  I rarely have had the laughing kind and will tell about a time or two I did, in another post, another day. 

Yesterday evening (Wednesday), I began crying and thought I wouldn't stop!  It was getting close to church time and I curled up best I could on my bed, and prayed as I cried, "Lord, PLEASE help me! I've got to quit this crying before going to church!"  I went on to pray, "God this is overwhelming me and I can't make it without you! Please just let me feel your arms around me, holding me.  I know you're there, I know you care, but please show me."  After a few minutes more, the crying stopped and off in my power chair to church I went. 

 I homeschool two of our three kids.  Well, this afternoon, the youngest and I were baking bread as part of a school lesson.  I said to him, "I would love a bread machine!".  Two hours later, a couple from our church shows up and while there, the lady asked me, "Amy, would you like to have a bread machine?!"  My mouth almost dropped as she explained she had a brand new extra one that someone gave her!!!  I praised the Lord right then and there as I told her how I had not more than two hours before told my son I would love to have one! 

God is so good! He cares! He really cares!

I Have an Alias

I have felt like I've been in the Twilight Zone for the past few days.  You see, last week, my doctor put me on a new diabetes medication to see if it would do the trick in lowering my blood sugar enough to avoid insulin.  In talking to others with ALS, I have found that even those who aren't diabetic, can find they suddenly have high blood sugar.  I've had diabetes
for a couple of years now.  I am happy to report that the new medicine will probably do the trick because my numbers are already getting lower now, even before taking the first dose today.

Didn't I say my doctor put me on it last week?  Why yes, dear observant reader, I did.  Here's where we enter the Twilight Zone..... The nurse let me know the medicine had been called in last week.  So, I go to the pharmacy to ask for it by my name (of course, who else's?!) .  I hear, "nothing is here for you."  To which I reply, "o.k. my doctor was supposed to call two meds in for me so I'll check back with you tomorrow."  As it just so happened, I was back in the area the next day and did just that.  Once again I hear from a different pharmacy tech, "there's nothing here for you."  I now replied, "hmmm...that's strange, but being the holidays, who knows. I will check with them."   

Now, having a bad memory like I sometimes do now a days, I forgot to contact the doctor's office.  Finally, I emailed the nurse (I love that I can do that!) and she called me yesterday.  She tells me that the pharmacy told her I have two prescriptions ready for pick-up and have for a few days!!!   Glenn took me out last night so we stopped by to pick them up.  What do I hear from a young tech (seriously young, smacking her gum, young)---"nothing here for you."  I just about screamed right there in the middle of the store!  Keeping my composure calm, I say, "I have asked about these for days. I've been told there was nothing here, but my nurse assures me there is- that someone here today told her I had two prescriptions here that have been ready for days and in fact, you have another one that won't be ready until later this week when you get in a shipment."  I wait while she smacks her gum and tells me, "nothing is here for you." Commence stand-off  and stare down.  I'm going nowhere.  She's saying nothing.  Finally I try again.  "That is so strange. How can this be?"  She asks, "do you possibly go by another name?"  I answer, "why no.  I've only ever been Amy-maiden name-married name."    She says to hold on and disappears for a moment.  She returns to tell me that there is nothing for me and can I give her the two first letters of my last name again.  She tries it to no avail.  Not wanting to be a pain and hold up the long line, but wanting my medicine, I offer my insurance card and explain that I've gotten medicine under MY name many times in the past four months I've lived here.  She disappears again, comes back and says, "you're Amy Baker."  I say, "no, I'm not."  She says, "well, here at this pharmacy you are.  Remember that.  You're Amy Baker from now on.  If you come and ask for a prescription under any other name you won't get it.  You're Amy Baker."   Mystery solved.  

I have an Alias....  Baker... Amy Baker....

Church

I grew up a PK- a Pastor's Kid.  Oh the stories I could tell!  Church though was expected.  You couldn't tell my Mama or Daddy you just didn't want to go to church!  That wouldn't fly.  It's the same principle Glenn and I have today with our own kids.  Church is a priority.

I'm not going to lie.  There were times that I only went because I was made to, but truly overall, I enjoyed going to church.

Today, I am a Pastor's Wife- today as in this actual day,  being Sunday, I was in church twice- once this morning, and again this evening.  I'll return Wednesday.  Since having ALS, I have found church means more.  No, I'm not suddenly super spiritual or something, more than the person next to me, but I can tell you, I seem to feel things more than I ever did before.  Heaven is sweeter.  Heaven is closer!  Worship feels well, more like true worship, and not something that I do because it's tradition or ritual. 

I only wish I could have felt this way my entire life.  Songs have deeper meaning to me.  Try having a terminal illness and singing, "It is Well with My Soul."  It brings a wave of peace over me.  I truly may not know about tomorrow, but I do indeed know who holds my hand.

It was June 2012- my family of five was leaving for vacation to one of our favorite destinations of all time- Yellowstone!  
I had been out and about, running around town on the morning we were leaving.  You know, that last minute stuff you always just HAVE to do before leaving?   

When I got home, I fell, coming in the door to our home.  I was sure it was my new sandals that were a bit too big.  Two days later, though, while in Montana, my daughter and I were in an office building.  I fell again while wearing completely different shoes!  I knew then that something was definitely wrong.  In fact, that entire trip, I noticed I felt weaker.  

Prior to this, in fact for at least a year, I had been swimming a couple of hours each morning, five days a week.  I was doing "aqua aerobics" and LOVED it!  To this day I miss it terribly!

Months and months of countless tests, none of which were overly pleasant, I was told, "ALS".  It's a death sentence, a terminal illness that affects the motor neurons of the body.  It takes it all, the ability to walk, use the arms, hands, talk and eventually, breathe.  

At this point, I can do a mean shuffle!  I can no longer lift my legs to walk, but count myself blessed.  Just last month, I lost the ability to open the supposed "child proof" pill bottles.  My hands are failing me.  I am still so happy that I can type and play the piano.  I feel that will one day go too, but until then, I will tickle the old ivories with as much gusto as I can.

I don't intend to quit until you've heard I had no choice- I've gone on.  I hope I can still be an inspiration to many.  

In July of this past year (2014), we moved from Minnesota to Oregon.  Somehow, my old blog name of "Mini Apples: Life in the Minneapolis Metro (minnesota-mama.blogspot.com)" no longer seems to fit!  No, I hadn't posted there in quite some time, but with my increasing progression of ALS, I thought it was time to blog again.  Maybe this will be therapeutic for me, and maybe just maybe, you who will read this will learn something.

I chose to call it "Amy's Life Stories", as a play on ALS, the illness that plaques me.  My address is http://www.alifesufficient.blogspot.com because there again, a play on ALS- and really, I want to talk here about many things, but yes, my life has been sufficient.  I hope to make it more in the time I have left. 

In the coming posts, I will tell my "ALS story".  Life is definitely not all roses and sunshine.  There are days that I can barely hang on, but overall, I know that it's all worth it.  I will share it all here.