Wednesday, July 20, 2011

Life With Aunt Marge: Our God is Greater - Chris Tomlin

Life With Aunt Marge: Our God is Greater - Chris Tomlin

Life With Aunt Marge: Misfire at the Airport

Life With Aunt Marge: Misfire at the Airport: "I was thankful to get through airport security with my 12 pre-filled glass syringes. Copaxone. I was well prepared for any trouble. I had t..."

Life With Aunt Marge: Hindsight is 20/20

Life With Aunt Marge: Hindsight is 20/20: "For reasons we thought we understood (simplifying our life, getting out of debt, being closer to town, escaping allergens..etc.) we decided ..."

Life With Aunt Marge: Mercies in Disguise

Life With Aunt Marge: Mercies in Disguise: "http://www.youtube.com/watch?v=1CSVqHcdhXQ&feature=player_detailpage It made sense that my vitamin B levels could be low due to poor absor..."

Life With Aunt Marge: The Tests

Life With Aunt Marge: The Tests: "The doctor was very easy to talk to and didn't make me feel like I was crazy when I told her my various strange symptoms. She performed a b..."

Monday, July 18, 2011

The Tests

The doctor was very easy to talk to and didn't make me feel like I was crazy when I told her my various strange symptoms.  She performed a brief physical exam, testing reflexes and such.  She noted that one side of my body was reflexing a little differently than the other.  Other than that, all seemed well.  With that small clue along with the symptoms I shared, she decided to order an M.R.I.   A few days later, I was heading through the white tunnel hoping I could make it through an hour and a half of imaging without using the bathroom and without twitching from the muscle spasms.  I actually felt amazing during the test.  My body felt so relaxed that I even had the crazy thought that maybe God was healing me at that very moment.  I expected the test results to come back normal.  As I was leaving the M.R.I. room, the technician who had gone into the small computer room to see if the images were clear, came in and asked me how long I had been having my symptoms.  "Why are you asking me this?" I thought to myself.  "Did you see something?"  It didn't really  matter if she had because she wouldn't have been able to tell me.  Then, as I left the room to get dressed, the man who had been watching the computers during the whole test came out of the room and said, "Good luck to you, miss."  The same questions haunted my mind.  Were they just making small talk, being polite? I went from wondering if I was healed to wondering if I had a massive tumor on my spinal cord. 

I was grateful that the doctor had squeezed me in on her lunch hour to give me the results the next day.  "Inconclusive", was her conclusion.   There were several white spots on my brain indicating lesions.  These lesions could have been there for many years as a result of migraines or they could be lesions caused by multiple sclerosis that were located in areas that were not considered "classic" to the disease.  No spots on the spinal cord or brain stem.  That was a good thing.  No tumors.  A great thing!  She gave me two choices.  One, I could have a spinal tap that would give an immediate answer as to whether or not I had m.s. with a 95% accuracy.  Two, I could wait six months to see if I had new symptoms and possibly order another M.R.I.  The problem with number one is that spinal taps can be very uncomfortable.  The problem with number two is that if I did have m.s. and didn't get medicated right away, I could have another attack.  Each attack is usually different...maybe more severe.  The damage from those attacks cannot be reversed.  What if in the next six months I had an attack that damaged the nerves to my legs?  The doctor assured me that the likelihood was slim, but there are no guarantees.  I decided to think about it. 

Within a week or so, my symptoms started to escalate.  Each time this happened, I would worry about the long term damage that could be happening inside my body.  Deep down inside, I knew I needed to just have the spinal tap done, but I was scared.  My doctor reassured me that she had only had two patients with spinal tap complications within the last five years.  For some reason, I felt like I would be the third.  I battled back and forth with the idea.  I called my friend, the doctor, and discussed it with him.  I called my aunt.  Everyone seemed to think it would be best for me to just have the answer I needed...just so I could have peace of mind,  rule it out, etc.  The spinal tap would go fine. Statistically, that was true.  But, statistically, I shouldn't have celiac disease.  I shouldn't have m.s.. 

After a bad night of numbness and spasms, I finally decided to bite the bullet.  I opted to have the procedure done in my doctor's office rather than by a radiologist in the hospital.  She is a very capable doctor and she assured me that I was thin enough that it wouldn't be difficult to find just the right space to insert the needle to draw the spinal fluid.  And, it was thousands of dollars cheaper.  Jack went with me.  I bent forward, hugging my knees while he sat facing me, hugging all of me.  It hurt, I won't lie.  The doctor said she hit some scar tissue and needed to move to another spot and try again.  I didn't doubt it.  I have been having chronic back pain for years.  At one point, the fluid stopped flowing and she was afraid she wouldn't be able to collect enough for all the tests she wanted to order.  Thankfully, the flow picked up again and it was over in a few minutes.  My legs both went numb.  She said that was normal because of the adrenaline.  In my mind I thought, "No, it's because I DO have m.s., dangit!"  But, I always had that battle of faith and fear going on in my head.  And it would continue for a few more weeks while I waited for results.

The doctor warned me that a slight percentage of people would get a bad headache from the spinal tap.  I was to lay flat for a day or two in order to avoid this.  I thought I followed the orders quite well.  But still, I became the exception to the rule.  I took pain killers and hoped that things would get better.  They only got worse.  Every time I lifted my head, I felt it would explode.  The pain was unimaginable.  I called the doctor's office and was instructed to meet a radiologist at the hospital who would perform a procedure similar to the spinal tap where he would collect some of my own blood and insert it into my spinal cord (with another long needle) and patch up the hole that was causing my spinal fluid to leak out.  This was called a "blood patch" and it didn't sound fun at all!  I declined.  Maybe I just needed to lay flat longer.  Nope.  It didn't help.  The next day my mother came to stay with me while the kids were at school.  Now, every time I lifted my head, I started to vomit.  I called my doctor friend.  I wanted him to tell me that it would go away.  But instead he told me the blood patch HAD to be done.  It would give me immediate relief.  It was the only solution.  So, a special radiologist was called into the hospital.  In a few hours, I was on my way.  I staggered down the walkway outside of our front door bent over with my head down.  I only made it a few steps before collapsing on the front lawn to throw up.  My mom grabbed a plastic bowl and helped me to the car.  Luckily, we now live just a few blocks from the hospital.  I couldn't believe how long I had to sit in the waiting room.  I found a couch and laid down, praying that I wouldn't throw up in front of everybody. 

Finally, I was whisked down the hall to an x-ray room.  I lay on the table, curled up on my side.  The radiologist was amazing.  He gently described the procedure to me and walked me through the whole thing with his soothing voice and mannerisms.  The nurse had to call in her supervisor because she was having a hard time drawing my blood.  When my blood was finally pulsing through the tubes, the radiologist was able to get started.  The imaging machine helped him to locate the spinal fluid leak and the blood was slowly inserted.  He told me to let him know when I started to feel pressure.  That would mean that the hole was "plugged".  Even though it was uncomfortable, I actually waited a few seconds after that sensation...thinking that would guarantee that it was very, very "plugged".  He was curious why it had taken so much blood.  I didn't confess.  The radiologist was  like a miracle worker!  Immediately, I was able to sit up and walk upright down the hall to the recovery room.  I waited an hour and went home. 

Yep, I beat the odds...I was my doctor's third person.

Thursday, July 14, 2011

Mercies in Disguise

http://www.youtube.com/watch?v=1CSVqHcdhXQ&feature=player_detailpage

It made sense that my vitamin B levels could be low due to poor absorption caused by celiac. But, the blood work came back normal and I was referred to a neurologist.  He was a very reputable doctor and I was thankful to know him personally.  Unfortunately, with his success comes a very full schedule. Waiting for my appointment was driving me crazy.  I contacted my aunt who also has m.s. She was a great encouragement to me and we both felt like it must be something else.  I started researching the possibilities.  The day that I was learning about Lou Gehrig's disease, the muscles in my left arm started twitching.  I could see it happening.  "Oh God, not that!", I thought.  My hands were falling asleep every night. And then, my legs.  Each new symptom became my new research project and added to my anxiety.  I was trying to be patient about my appointment.  Jack suggested that we call our friend, the doctor, and just see if we could get in any earlier. I refused to play the "friend" card and ask for special privileges.  I simply called the front desk and asked to be put on a waiting list to fill any cancellations that may arise.  And then I prayed. And Jack knelt beside me and prayed.

  The next morning, after suffering a sleepless night, I went to drop off my daughter at school.  And who should pull  up to the school curb in front of me?  The doctor. In the few years that our children have attended the same school, I have never run into him while dropping off my daughter.  I wanted to jump out of my car and tell him everything.  But, I was in my pajamas. Yet, this was a God moment, so, of course, after his kids ran towards the school,  he got out of his car and came to me. He was getting ready to go out of town and was going out to breakfast with his wife after dropping off the kids.
He didn't know that I had made an appointment but the look on my face told him that something was wrong.  When I told him about the hot shower incident, he became more concerned.  He was heading out of town for the weekend but said he would talk to his secretary about getting me in on Monday if possible.  He drove away but within a few minutes he called to tell me that he would like me to see one of his partners who specializes in....m.s.  And she could see me the next day.  Don't tell me this was all a coincidence.

Tuesday, July 12, 2011

Hindsight is 20/20

For reasons we thought we understood (simplifying our life, getting out of debt, being closer to town, escaping allergens..etc.) we decided to sell our country home on 32 acres last Spring. It was very difficult for me to say "good-bye" to the open spaces, mountain views, country porch, quiet star-filled nights.  I loved watching my children grow up in the pure beauty of it all.  It was hard for all of us, but something Jack and I felt we needed to do.  Within a few weeks, our home was sold for cash.  In our down economy, we considered this a miraculous confirmation from God.  So, with the time capsule buried under the chicken coop and the wooden mountain scene ripped from the built in window bed, we packed everything into storage and awaited our fate. 

For three months, the six of us lived in my grandmother's 800 sq ft home near downtown.  It turned out to be one of our best summers yet.  The kids and I loved being able to walk to the library, tea house, river,  parks and other nearby attractions.  Our 13 year old farm dog learned how to go for a walk.  My daughter even pursued her dream of having a dog-walking business.  One client, but it was a start.   Other dreams that were longed for in our country days came true...a lemonade stand, a garage sale, a neighbor.  Yes, our cozy cottage became our diamond in the rough.  Knowing that it was only temporary insanity helped.

We had decided that it would be smartest to rent a home within our children's school boundaries while we took our time looking for just the right fit.  But with the few rental options we could find, we were required to sign a year lease.  Every home on the real estate market within our budget had either a very small yard or a very big need for remodel.  It was in the midst of great frustration that Jack called on his lunch hour to tell me that he had stumbled upon our home. 

It was a bank-owned home and the transaction happened in a blur of excitement.  I never dreamed I would own a home with an indoor pool for half the price of our country home.  I never dreamed that we would be a few blocks from my husband's office in town yet look out onto several acres including cows and horses beyond our back fence.  Even better, they belonged to the neighbors, so we didn't have to take care of them!  I never dreamed that when we moved, our home could still be large and unique enough to be the perfect hang out for lots of kids.  Yet, it seemed that God was gracious to us beyond measure in our desire to be debt free.  Little did I know what was ahead. But He did.

About six months after we moved in, my hands started falling asleep in the middle of the night.  Strange.  Annoying.  Probably carpal tunnel.  I continued to be frustrated by the fact that even though I had gone gluten-free after my diagnosis of celiac disease two year prior, I was still extremely fatigued by 3:00pm.  I tried to fight my fatigue with exercise.  I had run my first marathon in 2009...my goal before I turned 40.  But now three or four miles was about all I could take.  I decided to use the elliptical so that if I got too tired, at least I would be home and not stuck down the street.  After about 20 minutes, my feet would go numb and my legs would start to shake.  Strange.  Annoying.  One day, after a hard kickboxing workout, my legs and arms fell asleep in the hot shower.  I felt like I was going to pass out and I started crying uncontrollably.  The kids were at school and Jack was at work.  I made my way to the phone, called Jack and laid down on the floor and waited.  What a blessing that his office is so close.  Within an hour, I was driving the car to pick up my dog from the groomer.  I apologized for being late, embarrassed by what I thought had been a panic attack of some kind. 

With continued random numbness issues, I decided to call my doctor.  She suggested we do some blood work to see if I was low on vitamin B.  If that checked out ok, I was to make an appt. with a neurologist.  Carpal tunnel, bla bla bla...or m.s.   M.S.?  Flashbacks of two people from my childhood came into my mind.  My piano teacher: old, swollen feet, wheelchair bound, unable to play the piano but instructing me with her words...and then she died.  My neighbor man:  cared for by a live-in nurse, wheelchair bound, unable to feed himself, unable to talk.  Ha!  I doubt a silly episode in a hot shower could indicate something that severe.  But, that was exactly what struck her interest.  She wrote it down in her chart.

The good thing about the internet is that you can self-diagnose.   The bad thing about the internet is that you can self-diagnose.

And now I am too tired to tell the rest of the story.  Maybe tomorrow.  Don't worry,  hindsight is 20/20.

Sunday, July 10, 2011

Misfire at the Airport

I was thankful to get through airport security with my 12 pre-filled glass syringes. Copaxone. I was well prepared for any trouble.  I had them stored in my carry-on in a special case with my prescription label and a note from my doctor.  I decided not to warn the security guard of my contraband. Instead, I held my breath and quickly glanced over at the tech as it went through the x-ray.  There wasn't even a pause, a flinch, a question or the dreaded interrogation.  Maybe he wasn't paying attention.  Maybe he didn't care.  I almost felt hurt.  I didn't even get to tell this complete stranger that I have this stupid disease that requires that I give myself injections every day.  No glance, no hitch, no story to tell. 

Our 6:30pm flight was delayed by three hours.  I felt the pain and fatigue running down my legs as we paced the airport shops.  My lovely assistant and youngest child, Leah, reminded me that I was due for my shot.  In an effort to be a positive role model, I had to buck up and get 'er done without complaint.  First, we went on a mission to create an ice pack.  Leah came up with the great idea of asking for a food-handlers glove filled with ice at Wendy's.  They handed me a to-go bag.  That'll work.  When we entered the bathroom, I was surprised to see a girl that I went to high school with over 20 years ago.  Holding tight to my little blue case, I felt like I had a dark secret in my hands and yet part of me wanted to respond to her query, "How are you?" with.."Well, I just got diagnosed with M.S. and I am in here to give myself a shot.  How 'bout those Lakers?"  Instead, we enjoyed a short but sweet exchange and I waited for her to dry her hands and leave.

Leah was excited to discover that there is a sharps container on the wall in the airport bathrooms.  Never noticed that before.  We both crammed into a stall.  I refused to use the larger one marked with a wheelchair..now..or ever.  So, there we were, standing sideways in front of the toilet.  We set my shot kit on top of the t.p. dispenser and went to work.  I unsealed the syringe while Leah got the auto-injector ready.  She pushed the plunger down.  A method we call "Lock and Load".  I couldn't remember which of the seven body areas we were scheduled to inject.  I left my m.s. calendar at home.  Leah was pretty sure we were on the right thigh.  After loading the syringe, Leah accidentally hit the button on the injector and we had our third misfire in the last month.  In an effort to defray the need to call the pharmacist to send a replacement syringe and all the red tape that requires, I grabbed the syringe which was still over half full out of the injector, pinched a large chunk of fat on my thigh with my left hand, closed my eyes, held my breath and stuck the needle into my leg...rouge style.  It seemed like it took forever...but I did it.  I had practiced on a foam pad without the auto injector in case of emergencies like this.  But  this was the first time I had actually done it on myself.  I didn't pass out in the airport stall next to my ten year old daughter.  Thank the Lord!  In all the excitement, I dropped the glass syringe on the concrete floor and quickly snatched it up lest someone in the stall next to me thought I was a drug user.  Well, technically, I am.

I held the ice bag to my leg as we continued to pace the airport.  I looked like I had been shot.  Well, technically, I had.  And Leah was there with me through it all.  She was disappointed that I had forgotten to use the sharps container and had thrown the syringe in the trash.  Oops, Aunt Marge strikes again.

Our God is Greater - Chris Tomlin