BEYOND FRUSTRATED

Mom is no better.  As of today, her symptoms are WORSE.  I can't explain her movements other than she feels the urge to move and IS moving ALL THE TIME and she is jerking her upper body every 30 seconds or so.  Her movements are present in ALL her waking hours and some when she sleeps.  I've started videoing her for documentation.  She is not getting much sleep or much needed rest and it is taking a toll.  She was seen by a UAB neurologist last week who feels like mom has Restless Leg Syndrome (RLS).  Well, hello!  Yes, she does and we've had that diagnosis since the beginning of May and is on medication for RLS which has been increased many times over the last 5 weeks.  Mom had a follow up with her Tuscaloosa neurologist this morning.  He still has no idea what is going on with her, but he is trying everything he can think of to help her.  He does not believe RLS has caused these constant movements and jerking in mom's body.  He took her off the RLS med that she started in early May simply because there is no improvement, only worsening of her symptoms.  He is also increasing another med that supposed to help with the jerking.  She was jerking so bad this morning I thought we were going to have to take her to the ER.  Also, her Tuscaloosa neurologist wanted her to go back to her UAB neurologist.  So I called to get her an appointment, but the UAB neurologist is out of the country until JANUARY!!!  I've since called her Tuscaloosa neurologist to let him know.  I'm waiting on him to call me back.  In the meantime, I am researching other Movement Disorder Clinics around the country.  This has been on my mind 24/7 for many weeks now.  I've googled and googled.  I've thought and thought.  I've called and called.  I've talked and talked.  I'm so frustrated.  NO, I'm BEYOND frustrated.

Good Medicine

I'm back, not to celebrate a fun memory, but to somehow blog what I am feeling.  It's early in the morning as I write so I can cry freely.  Everyone is asleep so no one will see or hear me.  Sometimes having a good cry is the best medicine.  Maybe blogging will be good medicine, too.

The last month has been extremely difficult and I don't see it getting better anytime soon.  My mom has been sick since early May and one of my best friends passed away May 5.  In fact I was at the hospital with my mom when I got the dreaded phone call about Jamey's passing.  I had to leave my mom to travel to be with Brenna and Tippa.  Leaving one worry and heading to another was hard.  My friend, Christy, knew that and stepped in.  She knew my dad needed to leave the hospital for a few hours and my mom didn't need to be alone, so on my way to Jamey's house, I got a text from Christy telling me she was at the hospital with my mom and would stay there until my dad came back.  I'm not sure she planned to be there for the many hours she was, but I'm so thankful she was.  That friend of mine, she's one of a kind.  

The next few days were agonizing.  Doctor after doctor came around, but none had answers.  No one could tell us what was going on with mom.  Her symptoms were somewhat stable, but she was on some relatively strong IV drugs.  With the approaching funeral, I was somewhat distraught about leaving town again.  Not to mention being distraught about Jamey's passing.  His passing was such a tragedy.  I felt like my heart could NOT take anymore.  My mom got discharged the day we were leaving for Jamey's visitation.  I was somewhat relieved, but the worry of "now what" was weighing heavily on me.  She wasn't really any better, but would be following up with a neurologist the next week so I was hopeful.  She had a really tough time while we were away for Jamey's funeral, although she tried to keep it from me, I could hear it in her voice when I called.  When I got back to her, she wasn't doing well at all.  We entered survival mode.  Let's get through Jamey's second funeral service and the next few days until the neurology appointment. 

The neurology appt:  It was a bad day for mom.  Her symptoms were even worse.  She could barely keep herself still to sit in the waiting room, much less fill out paperwork.  I took over the paperwork.  Soon we were called back to see the doctor.  After talking extensively with the doctor and after his examination, he told us how he was going to try to help her, but he did not know what was going on with her.  If he couldn't help her, he would refer her to UAB.  He said "she can't live like this".  He thought the medications she had been put on in the hospital were the correct medications, but wanted to change the dosages and try a different approach with them.  He also ordered some blood work and an MRI of her back.  The MRI of her back was to see if there was anything going on from the horrific staph infection in her spine that almost took her life in 2008.  We left the appointment with high hopes.  Very pleased with the doctor and his honesty and his plan of treatment.  This was a Wednesday.  The MRI was on Friday.  After taking two Valium along with her other meds that were to calm the movements and after an hour in the MRI, they were unable to get the MRI.  It was awful.  Emotionally.  Physically.  Mom was wiped out.

The plan was to check in with the neurologist on Monday.  It was our understanding that he would refer her at that time if she wasn't showing any kind of improvement and there was NO improvement.  I remember texting Christy that I didn't know how I was going to make it through that week.  We had Abby's 5th grade cookout all day on Monday, John Brady's 2nd grade pool party Monday night, my Bricks classes that week, Abby's 5th grade graduation, Emma's dentist appt, and exams on Thurs and Fri, and so on and so on.  Well, Monday came with a vengeance.  Mom's doctor couldn't work any magic and get her a referral to UAB anytime soon so I told Dad I was ready to take her to the ER at UAB whenever they were ready.  We left around 4:30 pm.  My mom was laid out in the back of her Yukon and my dad was hanging on by a thread it seemed.  As I drove them to UAB, my mom writhed in the backseat the entire way, my dad turned to the window and silently sobbed, and I held my tears as tightly as I was holding onto the steering wheel.  We waited for 6 hours in the waiting room.  Yes, 6 hours.  I don't know how mom made it that long.  I don't know how Dad and I made it.  Once in a room, we didn't have to wait long before the doctors came to see her.  She was able to see a neurologist in the er so for that, we were thankful.  It was looking like we were on the right track.  Having already been in a hospital for 6 days with numerous tests and labs already done, UAB was taking a different approach.  The neurologist reviewed her meds and wanted to try tweaking her meds and also said she would expedite an appointment with the movement disorders clinic at UAB.  Yes, this is what we needed!  A quick referral!  So we left UAB ER around 1:30 a.m. in good spirits.  

I got to my house at 3:00 a.m. Tuesday morning.  After sleeping a few hours, I helped get the kids to school and I crawled back into bed for a couple more hours of sleep.  When I got up, I decided I wasn't waiting on them to call me.  I knew the routine and knew how calls and appointments fell through the cracks.  I started making phone calls.  After talking with several people and getting transferred and getting frustrated, I finally got to someone who could schedule the appointment for AUGUST!!  I lost it.  Plain and simple.  I.  Lost.  It.  After pitching a fit and acting like a fool, I was finally able to get her an appointment for June 4.  And although it was two weeks away, I was somewhat satisfied.  I thought with the new neurologist's plan we would be ok until the appointment.

After somehow making it through the week, Brady took us on a surprise trip to Dauphin Island!  He knew I needed to get away and I did.  We all did.  A beautiful beach does wonders for the soul.  It was a special trip that will always hold a very, very special place in my heart.  Thank you, Brady.  You are my rock.

Well, here we are.  The day before THE appointment.  I'm not doing so well.  Why?  Seeing my mom in this condition isn't easy.  Watching my kids worry about their Nanny isn't easy.  Worrying that we aren't going to get the answers we need isn't easy.  My mom is THE STRONGEST person I know, and watching this horrible illness take every bit of joy out of her life is more than I can take.  She has no quality of life right now.  On her really bad days which are more often than not, she can't write, she can't even look at a magazine.  She hasn't been able to drive in over a month.   And when I say THE STRONGEST person I know.  I mean it.  Through all of this, she made sure she was at Abby's graduation.  She leaned on Dad through most of it and when it was over she had to leave immediately.  She's also made sure to be at the last 2 out of 3 of Abby's softball games this past weekend.  That's just how strong she is and how much she loves her grandchildren.  Yesterday wasn't a good day.  She wasn't good at all.  I wish my kids hadn't seen her like she was yesterday.  Mom's condition and the worried looks on their faces is more than I can stand.  Praying for answers.  Praying for help.  Praying for healing.  

Camp McDowell || Day 3 || October 31, 2012

Native Americans and the Earth

Hey, is that Charlie Chaplin leading our group?!?!  

Why, yes!  It certainly is!  

Happy Halloween from Camp McDowell!

You could have heard a pin drop as the  

kids were captivated by the making of fire!

 Face painting with wild berries

Camp McDowell Smiles

Camp Mcdowell || Day 2

 Breakfast and the Food Waste Warriors!

Pond and Stream

Words can not describe how cold it was on this particular morning, but maybe this next pic does! ha!

Sure was pretty even though it was faaareeeezzzziiinngg!!

Since the kids were so wet and cold, the instructor cut our pond and stream activity short and we headed indoors to dry out and warm up!

Next activity:

Almost canoeing!

We were all set to canoe.  Life jackets and oars.  Canoeing tutorial.  

In the canoe.  Ready to go.

Then a wind advisory.  No canoeing for us.  :(

The kids were so upset, but understood.

Team Adventure

Alabama Neighbors with Big Dave

BFFs - Emory and Abby

some of our cabin mates