Today is my MS-iversary!

It has been one year since THAT day!  Yes, the day I heard the news that would change my life forever.

So, what has changed?  Plenty … but I’ll hit the top ones.

Medications

There was a time when I didn’t take any medications.  NONE.  I once completely eliminated everything – even against doctor’s orders.

I have so many now I can hardly keep count.

There’s no chance of eliminating the medications that take care of those darned relapses and spasms.

Unsteady gait & bumping into walls

Now this is frustrating!!!  But, I have to admit sometimes it is kind of funny.

A few weeks ago, my husband and I stopped at a liquor store to pick up Prosecco so we could make mimosas for Sunday morning breakfast.  I “jumped” out of the car to “run” inside.  My balance and gait was so uncoordinated.  My direct path to the door veered sharply to the left.  Plus, I stumbled a few times.  Yep, and I was walking into a liquor store!  I got so tickled at how I must have looked I broke into a fit of laughter!

I think the thing that frustrates me most about this is I’m not able to dance.  I’ve tried.  I LOVE TO DANCE!  I’ve been dancing since I was four!  My husband and I connected by first becoming dance partners.  It makes me sad – very sad – that we aren’t able to dance anymore.  I pray this only temporary.  We have an amazing connection when we dance and I miss sharing it with him.

Tiredness

This one completely sweeps me off my feet.  When it does, I must lay down.

There is a commercial currently running advertising a new MS medication.  The woman with MS (a portrayal) breezes through daily activities never pausing.  In my reality, this is completely inaccurate.  I haven’t been able to breeze through any activity.

As a matter of fact, I wonder how people with MS work regular 8-5 jobs.  I can barely shower, wash my hair and get dressed without needing to rest!

I want to know how they do it!!!!!!!!

MRI

I had three diagnostic MRI’s in the hospital.  Brain, cervical (neck) and thoracic (back).  They were done at one time with the technologist moving from one area to the next.  It was uneventful.

When follow-up MRI’s were ordered seven months later, I thought ‘no problem … I managed them last time.’  Boy was I wrong.

I originally planned to have all three done on the same day so I could take the Valium my neurologist ordered just to keep me relaxed.  When my driver wasn’t able to take me, I had to split them into 3 days so I could drive myself to the imaging center.  That meant no Valium for me.

OMG!  I was a mess!  The noise of the 3T machine was unbearable even with the headphones and generic music.  With each section scan my anxiety increased.  I prayed.  And prayed.  And prayed.  I asked God to keep me calm and get me through.

I felt as though the scanning would never end.  FINALLY, it did.

One down, two more to go – on two separate days.

Anxiety increased with each MRI scan.  I was never so glad to be done with diagnostic testing!!!

Guess what?!?!?  I have three more MRI’s in December.  Not looking forward to them at all!   Ah, yeah … Valium is a must for these.

 

There are few more things … but I’m not quite ready to share.  😉

 

I don’t want MS to define me and what I can do.  I strive to push through.  Some days I do to complete exhaustion and pain.

I’m still learning how to navigate this … this … MS!

I wish I could snap my fingers and make-it-all-go-away.

Yesterday marks one year since the first IT occurred.  I never imagined that IT would lead to a diagnosis of MS.

It has taken me 10 months (since diagnosis) to realize the IT is not going to go away.

Mmmm … Make that accept.  To be perfectly honest, accepting IT is easier some days than others.

Most of us will eventually experience some sort of grief – job loss, end of a relationship, death or illness.  The event doesn’t matter.  The stages are the same.

DENIAL – ANGER – BARGAINING – DEPRESSION – ACCEPTANCE

Grief.com says the stages “are a part of the framework that makes up our learning to live with the one we lost. They are tools to help us frame and identify what we may be feeling. But they are not stops on some linear timeline in grief. Not everyone goes through all of them or in a prescribed order.”

I like the way Grief.com describes each of the stages.  The descriptions are clear and easy to understand.  I encourage you to visit their website for full description.

DENIAL

Grief.com lists this as the 1^st stage.

“It helps us to survive the loss.  In this stage, the world becomes meaningless and overwhelming.  Life makes no sense. We are in a state of shock and denial.  We go numb. … We try to find a way to simply get through each day.”[1]

This is exactly the way it was for me.

I was in a state of shock.  I couldn’t believe – and admittedly sometimes still cannot believe – I have this HORRIBLE disease.

As much as I tried to be brave, I was scared!  (Sometimes I’m still scared.  Particularly when a new attack occurs.)

You see, when I was nurse I worked in a rehab hospital.  One of our patients was a woman in her 30’s.  She had MS.  She was wheelchair bound.  She couldn’t do anything for herself – eat, go to the bathroom, get dressed.  NOTHING.  She was completely dependent on someone else.

When the diagnosis was confirmed, my mind immediately raced to this memory.

I didn’t want to be like that!

The easiest thing to do was to deny the diagnosis.  The denial did make getting through the day a little easier.

What’s the saying … if you pretend it’s not there, it really isn’t there.

Yep, that was me!

ANGER

Grief.com advises, “Anger is a necessary stage of the healing process.”

The truth is that anger has no limits.   It can extend not only to your friends, the doctors, your family, yourself … but also to God.[2]

At first, I wanted to – and did – blame God for allowing this disease to take root in my body.  ‘Why, God, why?  Why would you allow this?’

[A thought just came to mind.  When things go wrong we instantly blame God.  Yet, when things are good, we forget to thank and praise Him.]

After a rather tough day a few days ago, a dear friend suggested I pray “Lord I would love for you to take this away from me … but if you won’t, give me the strength and give me the power … if this is something you want me to have for whatever reason, if this is what my hand is that has been dealt, show me how to use it for Your Glory, show me how to navigate through this.”  Thank you, M, for helping me realize God may have a plan that is yet to be revealed.

BARGAINING

As the name of this stage implies, we attempt to BARGAIN with God to make things okay.

‘Dear God … I’ll blah-blah-blah, if you’ll blah-blah-blah’.

I honestly don’t recall moving into this stage of grief.

(For more information regarding this stage, please see The Five Stages of Grief on Grief.com.)

DEPRESSION

This one I remember!

Depression is a form of mental illness.  However, the depression experienced in the grief process is a perfectly natural process.  It is the appropriate response to a great loss.[3]

Loss evokes great sadness.  Sometimes that sadness can leave us with a feeling of not knowing what to do … we are in a “fog”.

That fog hung over me for quite some time.

I subjected myself to isolation … I didn’t go out of my house for days … I slept – a lot!  Sleeping kept me from thinking about it.  Remember … if you pretend it isn’t there, it really isn’t there.

Grief.com tells us, “We do not enter and leave each individual stage in a linear fashion. We may feel one, then another and back again to the first one.”

That is so me!  I moved in and out of denial, anger and depression so many times I can’t even count!  Fortunately, I spent less and less time in each stage with each visit.

Staying active and occupied has helped tremendously in keeping me from slipping back into this stage.

ACCEPTANCE

According to Grief.com, “This stage is about accepting the reality … and recognizing that this new reality is the permanent reality.  We will never like this reality or make it OK, but eventually we accept it. We learn to live with it.  It is the new norm with which we must learn to live.”

Navigating through a loss – job loss, end of a relationship, death or illness – is not easy.  Anyone who says or thinks otherwise is in DENIAL!!!

For me, acceptance comes in the realization that I need assistance.  [Not easy for me … the one who has to “do it all”.]

My gait and balance are still affected, so I need assistance.  Walking through the store or mall can be a challenge without some sort of support of a shopping cart or my husband’s arm.

The energy expelled in my morning routine is enough to wipe me out for the day.  I have to pace myself.

No more standing at the mirror to put on my makeup.  That must be done sitting down at a table.  [I haven’t quite figured out how to do my hair sitting down.  That is still a stand-up activity.]

Standing to put my pants on may lead to landing on the floor.  Sitting in a chair to slip on pants is a must.

It’s flats and sneakers for me!  I’ve never been much for sneakers.  I feel much shorter than the 5’1’ that I am when I wear flats.  Neither are my favorite!  I long to slip into my favorite pumps!  I pray someday I will be able to wear heels again!

Acceptance also comes in thinking about everything I may encounter while out and about.

I think about the location and what is available in the means of support.  Are there shopping carts available?  Are there hand rails (or wall) that can help stabilize me?  Are there stairs?  How far do I have to walk from my car to the entrance?  Will I need to carry anything?

Several months ago, I had to “run” into the grocery store.  I only needed a couple of things, so I only grabbed a little basket.  By the time I walked through the store – the items I needed were on opposite sides of the store – and got to the register I was a complete mess!!!  I was bumping into things and could barely walk!  Since then, I ALWAYS take a cart – even if I only need one thing.

I’ve accepted I need good rest.  I strive to get at least 7 – 8 hours of sleep.

I’ve accepted I have to change my eating.  It’s taken me a little while to incorporate this change into my life.  Remember that denial and anger thing?  It kept me from making changes to benefit my overall health.  Now, I am omitting some things from my diet and adding new healthier alternatives.

I’ve accepted I have to be my own advocate.  I’m still navigating this one.

I’ve accepted my life will never be the same.  While I still may not fully understand the “why”, I have accepted that the IT is now a part of my life.

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[1] http://grief.com/the-five-stages-of-grief/ … Denial

[2] http://grief.com/the-five-stages-of-grief/ … Anger

[3] http://grief.com/the-five-stages-of-grief/ … Depression

I was beginning to wonder if I’d ever see the day … the day when no hair would be caught by the shower drain.

TODAY WAS THE DAY!!!!

I CANNOT EVEN BEGIN TO TELL YOU HOW I FEEL!!!!

Okay, well maybe I can.  I am ecstatic!!!

When I chose Aubagio for my MS treatment, I knew that thinning hair was a possibility.  However, I honestly didn’t think it would happen to me.  I didn’t have any of the “normal” side effects.  I was certain I was in the clear.

I started having an unusual amount of hair loss about six to eight weeks after starting Aubagio.  That is, beyond the natural shedding process.  Washing my hair and combing my hair afterward resulted in more than a fist full of hair!!!  I wanted to cry.  I thought ‘it’s temporary, I can get through it’.  After all, my neurologist reassured me it was temporary and would stop within a month or two.

It didn’t!!!  [Today marks 9 months since starting the medication.  The hair loss should have stopped 2 to 3 months ago.]

With each hair wash and subsequent styling the hair loss increased.  I was beginning to wonder if I was going to have any hair.  [I was so afraid of losing more and more hair I got to the point in which I only washed my hair once a week.  Sadly, it didn’t help.]

My entire life, I’ve been fortunate enough to have very thick, healthy hair.  With the exception of a few bad cuts  I’ve always felt good about my hair.  Up until 7 months ago,  I loved my hair – the length, the condition, the style.

At times when my hair was long with little or no layers, I kept it up most times to avoid getting a headache.  It was that thick!  A ponytail holder wrapped around my hair only twice resulting in a 1½” or more ponytail.  Now I have to wrap the ponytail holder 4 or more times. Quite a significant difference!

Interestingly enough, the hair loss was the trigger for me to write about my diagnosis.  I guess I never realized how much my personal identity was tied to my hair.

For the first time in my life, I hate my hair!  It’s thin, it doesn’t feel soft & silky … it looks awful!  [Even with the considerable thinning, my stylist indicated my hair was in good shape and I still had A LOT of hair.]

Dealing with the loss certainly hasn’t been easy.

Don’t get me wrong.  I’m not being vain.  But, for me, if my hair doesn’t look good or I don’t feel good about it, my confidence and self-esteem plummets.

According to the Medical News Today (April 17, 2007), “The loss of hair in men is difficult to accept as it indicates aging, loss of physical strength and the fear of not looking attractive to women anymore. And since baldness occurs in mid life, the emotional effects are stronger. Though men undergo substantial emotional effects with aging, it is the women who tend to find it much more difficult to handle hair loss. 

“In fact, it has been scientifically proven through studies that women tend to suffer more emotionally and psychologically than men on losing hair. In fact, the psychological effects were much more severe than effects men went through when losing hair. Men and women were made to answer questionnaires designed by psychologists and physicians to find out the emotional effects on women.

“The results of these tests showed that women were much more worried about the way they looked than men. This led to a deeper psychological investment in the way they looked to the public. This was because women were, and are not exactly vain; they are more particular about the way other people perceived them. This is why women go through more emotional stress with the loss of hair.

“It is a known fact that to a woman, her hair is her crowning glory; and this is what all women generally feel about their hair. So with the loss of their hair, women tend to find a loss in self worth and self esteem. They tend to feel insecure about their appearance and how the world and the people around them will accept them.” [1]

Yep, that accurately described me!  It is more comforting to know that I’m not in the emotional boat alone.

I know it’s going to take some time for the lost hair to grow back.  It will … and until then … I look forward to the day when a “bad hair day” is just a bad hair day.

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[1] Medical News Today, http://www.medicalnewstoday.com/articles/68080.php

I’ve debated for weeks – make that months – about sharing my life as I know it over the last 9 months.  (For you smartass guys and girls … NO, I’M NOT EXPECTING!)

To give the full scoop, I have to take you back to September 2014.

I remember the day so clearly.  It was Friday, September 19^th.  I had to be up and to the airport to catch an early morning flight to Ft Lauderdale for a work meeting.  Immediately after arrival, the team headed to a coffee shop to start our day.

It was an exciting day … this was my last team meeting … my chance to say farewell to a group I had been working with for 3 years … I was about to embark on a new adventure!

During a short break, I excused myself and headed to the ladies room.  I no sooner stepped inside, locked the door and was about to push my pants down …

… and that’s when IT happened!  The most excruciating pain I have ever felt!  I couldn’t move.  I couldn’t stand.  I couldn’t sit.  The entire right side of my body was paralyzed!  I needed help but couldn’t walk to the door.  I managed to lower myself to the floor and wiggled my way to the door.  I got it open and two gentlemen saw me lying on the floor.  They rushed to my aid while shouting call 911.

Paramedics and fire department arrived within a few minutes.  They asked a battery of question and I provided a detailed account.  The pain had disappeared before they arrived.  I was finally able to move my leg and arm.

I kept thinking … I’m so glad I didn’t have my pants pulled down!

Since the paramedics couldn’t determine what was wrong or what happened, they whisked me away to the nearby hospital.  An x-ray, blood work and an ultrasound later, I was released without definitive answers.

That’s right, no answers.  How could there be no answers?!?!?

My mind whirled as I made my way home.  I had so many thoughts I didn’t know what to think.

As the new week approached, I was glad to settle back into my regular routine.

Then, IT happened again!!!  It was early Sunday morning – nine days after the initial incident.  I was awakened by excruciating pain that completely paralyzed the right side of my body.  I couldn’t move.  I didn’t know what to do.  I screamed for my daughter.  She ran to my rescue but didn’t know what to do.  After many agonizing minutes, the pain vanished.  I spent the rest of the night fearful IT was going to happen again.

IT didn’t happen again.  However, I had numbness in my right arm and leg that didn’t go away.  In addition, I developed dizziness whenever I moved my head.

I felt like a complete mess!  I was on edge – almost anticipating the next time IT decided to make an appearance.

Fortunately, I had an annual physical already scheduled for October 27th.  I detailed everything that had occurred over the previous month.  He ordered an MRI of my lumbar spine thinking I may have a pinched nerve.  He determined the dizziness was positional and ordered PT to help resolve.

Tuesday, November 4

MRI day arrived.  As I was getting dressed and ready to leave, I was having difficulty walking.  My gait was awkward.  I was bumping into furniture and walls.  I felt as if I was drunk.  Something was wrong and I wanted to find out what it was!  I made an appointment to see my primary care doctor that afternoon.

Before I left the house, IT happened again!  I was home alone.  All I could do was wait for the pain to disappear as I laid on the floor.

I finally made it the doctor office.  After a quick neuro exam, my doctor indicated he wanted me to see a neurologist due to the unsteady gait and unexplained numbness in my arm and leg.  He determined the IT was a severe muscle spasm.

Wednesday, November 5

The numbness was getting more and more uncomfortable.  It became so unbearable I went to the emergency room.  I thought I would get some relief.  I didn’t.  In fact, the ER doctor spoke to me like I was an idiot.  She did order a brain CT scan which didn’t show any abnormalities.  I was released with prescription for a muscle relaxer and a pain reliever.

Thursday, November 6

IT happened again!  I couldn’t believe it!  This time I felt the pain (spasm) in my abdomen as well as in my right leg and arm.

Just one more day until the neurologist visit … I felt some hope that I would finally find out what was happening with my body.

Friday, November 7

The day finally arrived — the day I got to see the neurologist, Dr S.  I was determined to get to the bottom of IT.  Dr S was pleasant and attentive.  After many questions and a neuro exam, he told me he was quite certain the IT was MS!!!  More testing had to be done for confirmation.

My head was reeling!  MS?  HOW COULD THAT BE?!?!?

I quickly pushed that thought out of my head.  There’s NO WAY I had MS.  I wasn’t going to have any part of that diagnosis.  NO WAY!!!!

Saturday, November 8

I woke with weakness on the entire left side of my body.  My arm felt as if it had been “asleep” and wasn’t waking up.  It took great effort to move my arm.  The numbness was still present in my right leg and arm.  My gait was still unsteady.  In fact, it had gotten worse.  In order to walk, I had to brace myself with furniture, wall or support of someone.

I spent the morning wishing all of it to just go away.

It didn’t.

I knew I had to seek medical attention.  I feared I was having a stroke.

My daughter, Becca, took me to the ER.  (The same ER I had visited the previous Wednesday.)

Fortunately, the attending doctors were much more attentive.  They did several neuro exams and ordered another brain CT scan.  IT happened just as the CT scan was about to begin.  Finally, someone witnessed IT.  The radiology tech was at a complete loss as to how to help.  He didn’t even report it to the ER nurse upon my return to the ER holding area.

While the CT scan didn’t reveal any abnormalities, the ER doctors advised they were going to admit me for further testing as they believed I “have MS.”

There it was again!  MS!!!!

I couldn’t believe they would actually say that without conclusive evidence.  Were they trying to scare me?

Sunday, November 9

My first night in the hospital was uneventful and un-restful.  I was anxious to get the testing underway.  I desperately wanted to know what was wrong with me.

Approximately 10 AM, IT happened.  My daughter was in the room when it started.  I told her to get my nurse.  The nurse witnessed most of it.  I was relieved someone saw what had happened and could relay the information to the attending neurologist, Dr K.

A neuro exam by Dr K resulted in several new medications and many diagnostic tests being ordered – blood work, MRI’s of brain, neck and back, plus a lumbar puncture.

Due to the weekend, I’d have to wait until Monday.  Another delay!

Monday, November 10

IT happened again!!!  10 AM.  The intensity and duration of the spasms seemed to increase.  The pain was unbearable.

I spent the next several hours having the three MRI’s – with and without contrast.  That was an experience.  I was trapped in the small, loud machine for what seemed like an eternity.

Next on the agenda was the lumbar puncture.  HOLY COW!  THAT HURT!!!!!  I had an epidural during childbirth; that procedure was a piece of cake compared to the lumbar puncture.  (I should preface this by saying I HATE PAIN … my tolerance is very, very low.  The older I get, the lower my pain tolerance seems to get.)

Upon return to my room, I had to lay flat for several hours to avoid a getting a headache.

The waiting and not knowing what will be happening next kept me on edge.  Everything was completely out of my control.

By mid-afternoon, the results were in.

All of the tests confirmed what I dread most … MS … Multiple Sclerosis.

I couldn’t believe it.

HOW?

WHY?

What was I going to do?

Dr K explained there were lesions on the nerves in my head, neck and back.  These “lesions” inhibit proper nerve conduction.  The lesions are the result of the immune system attacking the myelin sheath of nerves.  Dr K mentioned there have been many advancements in the treatment of MS and suggested a medication to slow the progression of lesion development.  He, of course, recommended I research all MS medications.

One of the new medications ordered was a high dose (1000 mg) of Solu-Medrol via IV.  I was told this medication help with the nerve inflammation which was causing the spasms, or attacks.

I was told they were going to keep me at least another night to monitor me.

I was a complete mess!  I felt completely alone despite my daughter and my mom at my side.  I prayed for peace and comfort … and faith that God would take this horrible disease from my body.

The next day, I had two more attacks prior to discharge.  I was beginning to have serious doubt the attacks would go away.  The resulting pain in my right thigh was nearly unbearable – even to the slightest touch.  To help alleviate spasms, the muscle relaxer Tizandine was introduced.

My favorite part of the day — my husband Skip, made it home!  [Since he was working out of state, we decided he wouldn’t come home until we knew the exact diagnosis and my discharge date.

The final three Solu-Medrol doses were completed.  I felt as if things were getting back to “normal”

We opted for a second opinion.  I went back to Dr S.  After reviewing the MRI results, he confirmed MS.  He recommended I see an MS specialist – Dr C.  The nurse for Dr S indicated she had to compile all of my records, send to Dr C’s office for review and then if he felt he could help me, his office would call.  It could take up to 6 weeks to be called!

We decided to see Dr K, the neurologist who saw me in the hospital, to begin a treatment plan.  After researching all the medications and side effects, I decided on Aubagio.  The side effects seemed less severe except for potential hair loss.  Unfortunately, additional testing needed to be done before starting the medication.  ARGH!!! Another delay!!!

I was frustrated.  I felt lost.  No one was helping me.  I wanted someone – a coach or an advocate – to help guide me through this new diagnosis.  The doctors and nursing staff were ineffective.  It seemed as though I was a nuisance and they didn’t want to be bothered.  Why couldn’t they be more understanding and more accommodating?

In a period of less than a month, the mysterious IT turned my life upside down.  I was ready for IT to go away!