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Thursday, July 25, 2013

25 - Slim to none

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For anyone "just tuning in" this post may leave you wondering what the heck I am rambling about, I hope you take the time to go back and review my earlier posts so you can catch up with our story. For anyone who has been along for the whole wild ride - Thank you!

Chances are
Slim to none
But still we

We had missed all of the appointments with specialists scheduled during the week mom ended up spending in the hospital.  She needed more follow up care than she was receiving here and she really needed to have that knee looked at for a second opinion as soon as possible.  I was really worried that it was going to completely give out - a fall could kill her, or worse.  It was painfully obvious we weren't going to find the help she needed here.  It would probably take me weeks to get those appointments rescheduled - if it were even possible.

Several hours on the phone proved fruitful.  I knew the chances of getting all the appointments scheduled in one trip were slim to none, but I was willing to take what we could get.  I was able to schedule the Rheumatologist and the Cardiologist for one trip; the Knee doctor we had been referred to was out of town and I wouldn't be able to schedule him until the end of January.  I explained how bad moms knee was looking.  "The end of January could be too late!", I nearly cried.

"If you would like we could schedule you with......", I was offered an appointment with an associate that would work in to the first trip, in fact the first appointment.

"Yes, that would be great", I thanked them profusely.  I looked up and said a silent "Thank You".

Although it would take two trips over the next 6 weeks, instead of the one trip we had hoped for, I was able to schedule five TOP doctors/surgeons between the two facilities.  The first of those appointments were to be with the Orthopaedic knee specialist (Thank God!); a Rheumatologist; and a Cardiologist.  The second trip would include a Pulmonologist and an Orthopaedic spine specialist. Although I had hoped to have her spine assessed sooner rather than later, at least I had gotten an appointment for her.  Now to reserve our hotel & make all the other necessary arrangements.

I had just made the last of the reservations when the phone rang.  That call sent me in a tailspin.

"I'm very sorry, your mothers case is very complicated", I wondered what they were "sorry" about. "Unfortunately, you will need to wait to see........", she went on to explain that the doctor we needed to see was not available.  They had cancelled the appointment I had just made with the associate knee specialist and it would now be February before mom could be seen.  Clearly, it would do no good to cry this time.  We'd just have to make do and hope the knee didn't completely give out before then.  Did it really matter in the long run?

My feeling was that the excruciating pain mom had in her spine would likely prevent her from being able to rehab the knee anyway.  On the other hand if she had back surgery, even though she had very little pain in the knee, I wasn't at all sure it would bear enough weight to allow her to properly rehab the the spine.  It really was a "catch-22".

I was imagining how hard it was going to be on mom.  It was going to be hard on all of us.  I was just getting in to a really good self pity session when the phone rang again. "There has been a cancellation.", it was the spine clinic.  I was stunned.  I think I started saying "YES" before she even finished the first sentence.  I readily agreed to get mom to that appointment, I didn't care when it was.  At the very least maybe they could do something about the horrible pain she was experiencing.  I prayed mom could hold on until then.  I hoped for good weather over the mountains.  I had a lot to get done in order to be ready to leave in just under a week, so I got busy.

I daydreamed a lot while preparing for that trip.  I had visions of mom being healed.  I pictured in my mind all the things we would do as soon as she was well. There were so many things we wanted to do.

Without any warning, my mind switched from daydreaming to the nightmare that had been our lives for the past 10 months. How had mom gotten that awful infection in the first place?  How had she gone from driving herself all over town one day to not even being able to feed herself or brush her own teeth the next?  I knew the pain was causing a lot of the other problems she was experiencing.  On a daily basis I wondered how much pain one person could withstand before their body simply shut down.  I knew it had to be extreme pain to affect her like it was.

I knew she was no stranger to pain.  Mom had been living with crippling rheumatoid arthritis for 50 years.  She had been diagnosed with it when she was pregnant with me, so I also had been living with her RA for nearly 50 years.  Amazing.  That's the word I would have to use to describe my mother if I had to use only one word.  It was amazing how gracefully she had endured this awful disease.  It was amazing how strong of a woman she was.  It was amazing how inspirational my mother was.  Just amazing.

Strangely, amazing is the same word I would use to describe doctors who had been "monitoring" mom and the many drugs mom that had been prescribed for her RA.  It was amazing how little they seemed to care.  It was amazing how callous they had been.  It was AMAZING (in my opinion) they continued to administer these drugs even in the midst of mom displaying many of the very symptoms they caution you about, even on TV commercials!

She had been getting Remicade infusions for years: , she was also taking Methotrexate , and when mom began complaining about the steadily increasing lower back pain, Arava was added:
When the back pain continued to worsen, narcotics were added to the mix.  AMAZING.  I could dwell on this forever, but I want to focus on mom - on improving the quality of her life.

I had told mom months ago to start preparing her "bucket list".  I didn't know how full she had gotten it, but I knew my hopes for her would overflow that bucket!  I imagined the things we would do, the trips we would take and the fun we would have.  And then I woke up.

With a lump in my throat, I reminded myself that we had a long way to go before I needed to worry about my expired passport.  Right now I needed to focus on what I needed to get done before taking mom on a road trip - an airplane ride wasn't even in the realm of possibilities.

Would it ever be in the realm of possibilities?

Do I dare even dream of a day when mom can enjoy life again?

God willing, I can dwell on this tomorrow.

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Growing Up Madison said...

Sounds like you have a long journey ahead of you. I hate when the doctors office calls and reschedule your appointment for sometime late in the future when it took you forever to get that very appointment. I hope things gets better with your mom. I'll say a prayer for both of you.

Peggy said...

Oh wow! You're family has been through the ringer with mom.

I have to tune in tomorrow...all those appointments...did it work out? Did she fill up her bucket list? I hope so!

Peggy from UBC

Peggy Nolan

healthcare hostages said...

Yes, the road has been a long one and not always paved!

Thank you for taking the time to read my post.

Your prayer and comment is appreciated!

healthcare hostages said...

It has been quite a ride for sure!

I hope you will tune in & see where we go from here!

Thank you so much for taking the time to read my post.

Your comment is greatly appreciated!