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.