Function Only Mode

This week...this week...is one for the record books!  Actually the past three weeks should go down in the record books for something!!  These past three weeks we have been in function mode only.  And I'm not even sure we've done that very well.

As many are awaiting an update from our trip to the neurologist, I simply have not had time to sit down and write!  Nor have I had the emotional stamina to write.  I am simply put...weary and worn out.  I am still struggling to function somewhat normal.  My brain is just foggy!  Details escape me regularly.  Simple decisions are very difficult to make!  Completing tasks seems impossible. But despite this...we have moved forward the best we could with life this week.

We did have an important drs appt with neurologist on Wednesday.  Our appt was at 4 pm.  Left home at 3.  Arrived back home at 10 pm!   A long night!!  Who knew that something as simple as going to the dr with you could be such a blessing?  That happened this week.  A dear friend went with us.  When I said I feel bad your skipping church to go with us, his response was I'm not skipping...I'm doing!  But I'm not sure Zine and I would have survived without him!!  Sooooooooo thankful!  Forever indebted!!

We arrived and was almost immediately called to the back.  But then the waiting began.  The nurse was quick to do her stuff.  But it seemed like forever before the nurse practitioner came in and did her evaluation.  Then it wasn't long before Dr. L came in.

When we went to this appt, Zine was pretty certain he was finished with all MS disease modifying drugs.  This chemo didn't work!  And it was the one with the best track record.  And after all we've been through and it hasn't helped MS, it doesn't really make you want to do anything else.  So we went, prepared to say we're done!

What Dr. L did do, was say we didn't need to do anything right now.  We need to give Zine's lungs some time to heal.  He has ordered a repeat CAT scan for Wednesday to assess if we are making progress with the clots reabsorbing.  But for at least three more months, we needed to take a break from treatments.   We still treat the symptoms of the disease but no chemo treatments or other drugs!

If after that we decide to treat the disease again, we will most likely be trying a chemo type drug that will be given 5 days in a row.  It will take about 8 hours each day.  We literally would go spend a week in Cullman, AL.  Now...after just getting out of hospital...that thought is overwhelming.

Dr. L is always good at encouraging you to stay in the fight.  But ultimately it is our decision whether we choose to proceed or not with the 5 day treatment in a few months down the road.   He said he would respect whatever decision we made.  And now...is simply not the time for us to make that decision.  Right now we are worn out and I think we are both ready to give in to the fight.  So I'm grateful that we didn't have to make that decision Wednesday night.  Grateful for a few months of not fighting a disease and just focused on allowing healing to take place in Zine's lungs.

We have a whole stack of prescriptions for medical equipment.  Words like power wheelchair, transfer boards, rolling shower chairs, a new bed, a taller toilet, grab bars, and patient lift were written on little papers that serve as an official documentation of our need.  Now we begin the hard part of implementing all those changes.  Once again, grateful for some knowledgeable people to walk beside us in these changes.

I would like to say I left feeling good and liked where we are.  Instead I left feeling very heartbroken.  This is not going away. I don't think there's anything we can do to make it go away.  It's forever here on this earth.  There's no relief.  It is.  It is our life.  It is our life forever.  And for that I am exceptionally sad.  And overwhelmed.  Oh I know that God could choose to heal!  And if He healed we would definitely be ecstatic and give Him all the glory.  But short of that miracle, this is.  And this is not the life we desired.  It is not we had planned.  It is not fun.  It is full of pain and grief.

Zine hates for me to be upset in his presence.  It is not okay for me to cry over him and MS in his presence.  I understand his thoughts and feelings regarding that.  But sometimes, I can not contain the tears!  I worked so hard to keep it together for him.  I did shed tears but I did not fall apart!  By the time we left the doctors office my head felt like it was going to explode.  And I think it was simply me trying to contain my emotions and stress just taking its toll in my physical body!

And there's been no time to process things emotionally yet.  We have lived in the function only mode all week!!  12 doctors appointments and a college visit all in a matter of five days!

And I know I've posted this picture before but it still remains as truth.