All posts by mightystrongandvictorious

About mightystrongandvictorious

This is my MS journey ... from diagnosis to adjusting to the new "normal" and daily living.

Without Hope, What Else Is There?

I’m gonna say it! (You might want to cover your virgin eyes if can’t handle it.)

Having MS fucking sucks!!!!

Any other word besides the big fat “F” word just doesn’t convey the message I want!!!

So, I’m gonna say it again … MS fucking sucks!!!!

* * * * * * * * * * * *

November 10th marked two years since the dreadful diagnosis came … “The MRI and lumbar puncture confirm what we suspected. You have MS.”

These two years certainly have held their fair share of challenges.

At first, the challenge was to just get used to the idea of having MS. (As if anyone can “get used to” the idea!)

The initial steroid treatment calmed the episode. There was no more weakness. There was no problem with balance. Medication (Aubagio) was started shortly after diagnosis. It seemed I would be okay and for the most part I was able to continue with my normal activities – dancing, walking the dogs, household chores.

As the close of the 1st year approached, walking became more challenging and fatigue was apart of everyday life. There was no more dancing. No more walking the dogs.

Shortly after the beginning of 2016, things began to get worse. After several visits with Dr N, we decided to try another medication – Tysabri. We had – I had – great hope that Tysabri would be it for me … once I got past the possible side effects. To great relief I didn’t have any!

Unfortunately, my hope was short-lived. Within four months … four infusions … things were not getting any better. In fact, they were getting worse!

Since every one responds to treatment differently, we pressed on with great hope things would improve.

Dr N ordered an blood test to check for Tysabri antibodies after my 6th infusion. I waited just about two weeks for results before it was confirmed. I developed antibodies to the Tysabri and wouldn’t be able to continue.

No 7th infusion for me!

I felt my heart sink. Now what? What’s next?

We quickly started to explore a couple options. One oral; one infusion. They both have their own set of side effects. Yes, some VERY scary.

I finally chose Lemtrada.

To say I’m not concerned or “scared” would be a complete lie. I am. BUT I HAVE HOPE THIS MEDICATION WILL BE MY CURE*. (*Even tough there is no cure for MS).

My neurologist and his infusion nurse participated in the clinical study. They have seen great things happen to the patients.

I am apart of a private Lemtrada Facebook group. Many members have posted their experience (good, bad and both). While there are some Negative Nellies and Pessimist Petes, I’ve found the information shared helpful and hopeful.

There are two recent posts that stand out in my mind.

1. A woman posted a photo of her feet crossed at the ankles. She had beautifully tanned legs, a flawless pedicure and the most spectacular pair of red high-heeled strappy sandals. The shoes caught my eye! I LOVE SHOES!!! Then I read the post. This group member shared she was walking in them AND that she even started running!!!! (No, not in the heels!)

I can’t remember how long she had been post treatment. I was just impressed she had heels on and could walk in them!!! I was impressed she was running!!! (Not that I want to run … I was impressed just the same.)

2. Another woman posted she was able to walk after a long period of being confined to wheelchair.

I want to fight! Every inch of me wants to fight and not succumb to the paralyzing grasp of MS.

It’s not easy.

By the end of the day (most days) I can barely walk!

Independent walking for any distance is pretty much not happening. I have to have the assistance of my rolling walker. Yes, it helps me maintain my balance and allows me to walk (very slowly). But let me tell you what! It fucking sucks having to use a walker to walk. I feel every single eye on me! I hate it!!!! I want to scream!!!!

Getting out of bed most mornings is challenging. Just the slightest movement causes pain. Not to mention the “hopelessness” (that I have IT forever).

Staying positive is a feat in itself!!!!

I try to stay positive not only for me but for my beloved. He has been a trooper! Even through the long drives to the doctor (2-1/2 hours). Even seeing me agonizing with every movement. Even when I feel helpless, hopeless and crying like a baby. Yes, even through his anger and grief. To say he’s pissed that I’ve (we’ve) been cursed is an understatement.

We both knew things would be different. We just didn’t anticipate how much IT would affect every aspect of our lives. (That’s a story for another time.)

In two short weeks, my infusion begins. (Round One is five days in a row over approximately eight hours each day.)

I’m all set and ready to go.

The porta-cath was inserted a few weeks ago. I now have a 2” scar and a lump where the port now lays just below my right collarbone.

Insurance is squared away. (Thankfully what the insurance doesn’t cover the MS One-to-One Program helps cover.)

My MS One-to-One nurse is in constant contact.

Did I say I’m ready?

I am SO ready!!!

Figuring that the Tysabri wasn’t working since at least July, I haven’t been on any MS medications. My body feels it too!!! Every. Single. Day.

Can I ask a favor?

Please pray for me and S as I begin this new treatment … pray for peace and comfort that we made the right choice … pray that I am able to tolerate with little or no side effects … ask God to lay His healing hands on me and rid my body of MS.

💗

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It’s Been a While. But, I Have a Good Excuse! I’ve been pissy!

I know … it’s been a while since I’ve written.

I could tell you “I’ve been very, very busy.” But, that would be a lie.

I could tell you “I just don’t know what to write about.” There’s some truth in that, but mostly a lie.

I could tell you “I’m pissed off! I’m so aggravated I don’t even want to think about it”. Now, that would be the truth!!!!

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* * * * * * * * * * * * * *

The end of July I traveled to Tampa for a week’s visit with my mother. I was due to go on to Dallas for Mary Kay Cosmetic’s annual Seminar.

Getting through the airports was relatively easy as I requested wheelchair transport.

After being in Tampa Bay for just a few days, I found it extremely difficult to accomplish most tasks. Complete exhaustion ensued if/when I pushed myself. Pushing myself really wasn’t an option because I didn’t have the strength or energy. I didn’t even get to shop at my favorite stores!!!!

I questioned continuing on to Dallas as the weekend approached. By Sunday, I knew I would not be able moved forward with the remainder of my trip.

Even though I didn’t play outside, the heat was overwhelming. Temperatures in Dallas were 10˚ – 20˚ higher. I couldn’t risk complete debilitation being over 1500 miles from home. I cancelled the Dallas portion of my trip and returned to New Hampshire. It took every ounce of energy I had and several days to regain stability.

Let me tell you … It was very frustrating to experience this! Since being back, I honestly haven’t felt like doing anything! I haven’t done anything other than grocery shopping and doctor visits. Truth be told, I haven’t wanted to talk to anyone either! I’ve been in a pissy mood!!!

Pissy because I’m not able to do the things I used to do! Pissy because I have this stupid disease!

Why …

Why …

Why … is there not a cure for this disease?!?!?!?

It’s just absolutely ridiculous there isn’t a cure!!!!

Cancer can be cured, yet MS can’t because there isn’t one! [Please don’t get me wrong, it’s absolutely amazing cancer can be cured. I’m very happy many patients are fortunate enough to be cured.]

Yes, there are drugs that can greatly diminish MS progression. But that’s it.

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After being on drug #2 (via IV infusion) for six months, I am still experiencing difficulty with balance and walking. Sure, I can walk throughout the house and to the mailbox without assistance. Outside of home, though, I must have some sort of support – shopping cart, rolling walker or my husband’s arm.

Alright … I’ll say it …

I WANT TO WALK NORMAL WITHOUT ANY ASSISTIVE DEVICES!!!!!! It should go without saying … I WANT TO DANCE WITH MY HUSBAND!!!!!!

I’ve been in physical therapy for several months working on balance. Sometimes I think I’ve improved but then I run into walls or stumble, almost falling. Then I feel like I’ve taken 10 steps back – figuratively and literally!

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At my last appointment with Dr N (MS doctor), we discussed changing to a new MS med – Lemtrada (IV) or Gilenya (oral) – due to diminished strength, balance issues and walking difficulties. He’s concerned my current med – Tysabri – isn’t working because I have antibodies. We’re waiting for lab results.

Thinking about a new med is mind boggling! There is so much information! There is so much to weed through.

I have another appointment with him in a couple weeks. I still don’t know what to do.

Okay … okay … I admit stopping for a few minutes to think about what’s been happening and writing about it has helped.

I guess I should be more diligent about writing!

Thanks for reading!

V

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Who Was That?!?!?

Who was that?!?!?

No!  It couldn’t possibly be!  BUT, yes it was … … … … … … me.

Where did that anger come from?  Why did I get so angry?  What possessed me?

Since the hour and half those hateful words exited my mouth, I have been replaying the entire scene.  You know what?  I can’t remember but a few words – and not the words that cut so deeply.

The person on the receiving end certainly didn’t deserve the hatefulness.

After the sting, my mind reeled with the scene that just played out.  I had to dig deep to muster up the courage to apologize.  It was so difficult knowing full well the person was hurt and remembered every single word.

How could I be so mean?

I was to taught to treat others like I want to be treated – it’s The Golden Rule.  It is so not me to be downright hateful.  (My family is probably laughing at that one!)

I recently read an article — Invisible Symptoms of MS: Mood Swings.  I actually scoffed at the idea that mood is affected by MS.  After this incident (and another a few weeks later), I realize it is spot on.

I agree with the author that “Living with multiple sclerosis can cause a tremendous amount of pent up frustration, stress, anxiety, pain, and depression.”

Yep … got all those.

And, I’ve noticed I’m more irritable and get agitated more easily at things that really don’t matter.

Just thinking about it makes me frustrated!  Aye yi yi!

Deep breath!  Deep breath!

Moving on …

I’m certain anyone experiencing any illness deals with a roller-coaster of emotion.  The caregivers too!

Especially anger!

While I’ve “accepted” this … this … this MS, I’M STILL ANGRY!  ANGRY I HAVE THIS HORRIBLE DEBILITATING DISEASE!!!!!  ANGRY THIS DISEASE HAS AFFECTED EVERY AREA OF MY LIFE!!!!

Suffice it to say, I’m pissed!

BUT … It doesn’t excuse me from mistreating those around me.

The Mayo Clinic article — Anger management: 10 tips to tame your temper – offers some great tips to help keep anger in control.

Tip #1:  Think before you speak

In the heat of the moment, it’s easy to say something you’ll later regret. Take a few moments to collect your thoughts before saying anything — and allow others involved in the situation to do the same.[i]

This is HUGE!

Once the words escape my mouth they cannot be taken back.  I don’t want to hurt those around me.

My heart still hurts for the pain I caused.

I promise to THINK BEFORE I SPEAK!

_________________________________________________

[i] http://www.mayoclinic.org/healthy-lifestyle/adult-health/in-depth/anger-management/art-20045434?pg=1

I’m Walking Here!!!!!!!

I’M WALKING HERE!!!!  (Said with that very distinctive nasally NY accent like Dustin Hoffman in “Midnight Cowboy”.  However, I pictured the scene in “Miss Congeniality” in which Sandra Bullock is ‘gliding here’.  Yeah!  I do that too because I can’t pick up my feet!)

Getting back on track …

I’m walking here!  That’s right I said walking.

I registered and formed a team … albeit small at the moment … to participate in the 5 mile National MS Society’s WALK MS being held near me.

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If you saw me walking, you would most likely think “What the heck is she doing! She can barely walk!”  I thought that too!  I admit, it’s absolutely true!

BUT … I NEEEEEEEED TO DO THIS!!!!!

I am just a little over one year since diagnosis.  My mobility has GREATLY DIMINISHED.  I need to change that!  STAT!!!!!

The only way to change it is to GET MOVING!!!

Less than a year ago my husband and I trekked through our favorite place – NYC.  While my walking was significantly slower than previous visits, we still managed to walk well over 10,000 steps through Midtown and Lower Manhattan.  We even walked across the Brooklyn Bridge and back.

 

Up until this last fall, I did fairly well.  Balance and coordination was off a bit but I was still able to walk okay.  I was even able to walk my dogs!

I am not sure what changed.

I do know, though, there aren’t any new lesions that could possibly create problems.  The December MRI’s confirm that.

So, why the diminished walking ability?

The only theory I have is that as walking has become more difficult, the less I do.  The less I do, the less I can do (and able to do).  Make sense?

Perhaps this will … Newton’s law says:  a body at rest tends to stay at rest, and a body in motion tends to stay in motion, unless acted on by a net external force.

The external force?  ME!!!!

I am making a change so that I can regain my walking ability.  (Possibly even my dancing ability!!!!  Those of you that know me, know how important that is to me.)

My neurologist and I are in the process of changing my MS medication.  Plus, he has recommended a new medication to help with my walking, balance and coordination.  And he is hopeful I will regain my ability to dance.

In addition to the medication adjustments, I have started physical therapy.  PT will help to improve my balance, flexibility, strength and coordination.  I have only had one session so far.  However, I have at-home exercises to do.  So far so good!

I am excited about this!

I have to admit … It’s been a while since I’ve been excited about anything.  This diagnosis has really taken the wind out of my sails.  I feel as though I am wandering aimlessly … just getting through the days.  I keep myself occupied working on quilting projects, working my small home-based business or busying myself with “house stuff” and taking care of MY LOVE.

Don’t get me wrong … I’m happy doing those things!  EXCITED?  How can I get excited about doing dishes, doing laundry or cleaning the toilet?

BUT …. BUUUUUUT … I’m still able to do them, so, yeah, I can say the fact that I can still do them makes me exited.

Got it?  Okay … moving on ….

I am excited about doing the walk …

I am excited about the prospect of regaining my flexibility, balance and coordination (through PT and getting active).

I’m excited about the prospect of LOSING WEIGHT!!!!

I’m excited about spending extra time with MY LOVE!!!  (Plus, him getting more active and losing weight too.  Shhh …. don’t tell him I said that.)

I’m excited about raising money for MS!!!  The experts need to find a cure for us.  The only way they can do that is through funding for research.

Want to help?  Here is a link to my WALK MS page where you can join my team or donate:  http://main.nationalmssociety.org/goto/vickiwalksforms

I will most definitely keep you updated on my walking progress and improvement.


 

This is just too funny not to share:

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AWARENESS – Shedding a Little Light on MS

MS AWARENESS

March is MS Awareness Month

So, what does that really mean?

On the other side of MS, I was “aware” that MS existed. I was “aware” that people had it.

That’s about all I was “aware” of.

On this side of MS, I’d like to say that I’d rather not be “aware” of it.

Yeah, yeah. I know burying my head in the sand isn’t going to accomplish anything … but … sometimes it’s a relief to not think about IT.

Many of you probably didn’t know anyone with MS, until my diagnosis. Chances are I may be the only one you know with it.

I’d like to share just a little bit about MS with you.

What is MS?

Me:
MS is a disease that will turn your world upside down.

Activities such as showering and dressing are exhausting and take much longer to accomplish than before.

Official:
MS is a chronic disease that damages the nerves in the spinal cord and brain, as well as the optic nerves. Sclerosis means scarring, and people with MS develop multiple areas of scar tissue in response to the nerve damage. Depending on where the damage occurs, symptoms may include problems with muscle control, balance, vision, or speech.[1]

The scarring, or sclerosis, occurs as a result of the immune system attacking the myelin sheath that covers the nerve fibers. Scarring disrupts the transmission of nerve signals between the brain, spinal cord and the body.

What is the cause of MS?

Me:
No clue. That is, until I was diagnosed.

Official:
The cause of MS is unknown. However, “scientists believe the disease is triggered by as-yet-unidentified environmental factor in a person who is genetically predisposed to respond.”[2]

According to the National Multiple Sclerosis Society (NMSS) website, there is growing evidence Vitamin D plays an important role. Those with low levels of Vitamin D are at greater risk.

In some studies, viruses [Epstein-Barr (mononucleosis), varicella zoster, and the hepatitis vaccine] are believed to be linked to MS.

While MS is not hereditary, chances of developing it are greater if a parent or sibling has it.

What are the signs & symptoms of MS?

Me:
Before diagnosis –
• Excruciatingly painful muscle spasms which cause complete collapse to the floor
• Unexplained pain
• Numbness in hands, legs and feet
• Shooting tingling sensation shooting down my back to my legs when bend neck forward
• Dizziness

After diagnosis –
• See list below

Official:
Multiple sclerosis signs and symptoms may differ greatly from person to person and over the course of the disease depending on the location of affected nerve fibers. No two people experience MS in the same way.

The symptoms may include:

• Fatigue
• Numbness or weakness in one or more extremities that typically occurs on one side of the body at a time, or the legs and torso
• Lack of coordination or unsteady gait
• Vision problems
Optic Neuritis — This inflammation of the optic nerve may cause blurred vision, loss of color vision, eye pain, or blindness, usually in one eye. The problem is usually temporary and tends to improve within a few weeks. In many cases, vision problems are the first sign of MS.
• Spasticity causing extreme stiffness and loss of elasticity of arm & leg muscles; pain and limited function as a result of muscle spasms
• Tingling or pain in parts of the body
• Electric-shock sensations that occur with certain neck movements, especially bending the neck forward – called Lhermitte sign
• Cognitive dysfunction which can include difficulty with memory, attention or problem-solving; impaired judgment or ability to make decisions; sensory overload
• Dizziness
• Emotional changes including mood swings, depression, stress or anxiety
• Problems with bowel and bladder function
• Sexual dysfunction

Less common symptoms are:

• Speech problems
• Tremors
• Breathing problems
• Headache
• Swallowing problems
• Seizures
• Itching
• Hearing loss

MS AWARENESS 3

How is MS diagnosed?

Me:
I was examined by a neurologist who performed a neuro exam and took my medical history. After the exam he stated “we need to do further tests, but I’m pretty sure you have MS.”

Before those additional tests were done, I ended up in the ER the very next day due to left side numbness and weakness. The ER attending performed the same neuro exam and took my history. He stated the exact same thing as the neurologist the day before with one exception. He stated, “we’re going to admit you so we can do further tests.”

Official:
Diagnosis is difficult because no two people exhibit the same signs and symptoms.

Unfortunately, diagnosing MS can be very challenging as many of the symptoms are identified in other diseases and disorders. That means ruling out other diseases first in order to make an MS diagnosis.

A doctor, most likely a neurologist, will perform a neurological exam and obtain your medical history. He will then order diagnostic tests such as:

• Blood test – to rule out other diseases presenting symptoms similar to MS
• MRI – to identify lesions on the brain and spinal cord
• Lumbar puncture – to identify antibodies associated with MS
• Evoked potential tests — record the electrical signals produced by the nervous system in response to stimuli
(An evoked potential test may use visual stimuli or electrical stimuli, in which you watch a moving visual pattern, or short electrical impulses are applied to nerves in your legs or arms. Electrodes measure how quickly the information travels down your nerve pathways.)[3]

The type of MS will also be diagnosed.

There are 4 types – relapsing-remitting, primary progressive, secondary progressive and progressive relapsing. The following descriptions for each type are from the WebMD website.

• Relapsing-remitting (RRMS)
Most people with multiple sclerosis — around 85% — have this type. They usually have their first signs of the disease in their early 20s. After that, they have attacks of symptoms (called relapses or exacerbations) from time to time, followed by weeks, months, or years of recovery (called remissions).

The nerves that are affected, how severe attacks are, the degree of recovery, and the time between relapses all vary widely from person to person.

Eventually, most people with relapsing-remitting MS will move on to a secondary progressive phase of MS.[4]

• Primary progressive (PPMS)
In primary progressive multiple sclerosis, the disease gradually gets worse over time. There are no well-defined attacks of symptoms, and there is little or no recovery. In addition, MS treatments don’t work as well with this type of MS. About 10% of people with MS have this type.

A few things make it different from other types of MS:

∗ People with primary progressive MS are usually older when they’re diagnosed — an average age of 40
∗ Roughly equal numbers of men and women get it. In other types of the disease, women outnumber men 3 to 1
∗ It usually leads to disability earlier than the most common type, relapsing-remitting MS[5]

• Secondary progressive (SPMS)
After living with relapsing-remitting MS for many years, most people will get secondary progressive MS. In this type, symptoms begin a steady march without relapses or remissions.(In this way, it’s like primary progressive MS.) The change typically happens between 10 and 20 years after you’re diagnosed with relapsing-remitting MS.

It’s unclear why the disease makes the shift. But scientists know a few things about the process:
∗ The older a person is when she’s first diagnosed, the shorter the time she has before the disease becomes secondary progressive
∗ People who don’t fully recover from relapses generally move to secondary progressive MS sooner than those who do
∗ The process of ongoing nerve damage changes. After the transformation, there’s less inflammation and more of a slow decline in how well the nerves work

Secondary progressive MS is tough to treat, and the disease can be hard to handle day to day. Symptoms get worse at a different rate for each person. Treatments work moderately well, but most people will have some trouble using their body like they used to.[6]

• Progressive relapsing (PRMS)
Progressive relapsing multiple sclerosis is the least common form. Relapses or attacks happen every so often. But symptoms continue and get worse between relapses.

This type is rare enough that doctors don’t know much about it. Probably around 5% of people with multiple sclerosis have this form. In many ways, it seems similar to primary progressive MS.[7]

My current neurologist does not classify patients into these categories as he believes each patient has their own type of MS.

Most people diagnosed are between 20 and 50 with the majority being women.

What is the treatment for MS?

Me:
A bunch of medications to treat the symptoms. Prior to the diagnosis, I took two prescription meds daily and one prescription for migraines as needed. Now, I take those plus five more. A few are just once a day. Several are three times a day.

It’s way too much to remember. I have six Sunday through Saturday pill containers – two AM, two PM and two bedtime so I can prep the meds two weeks at a time.

[At my last appointment, my neurologist discussed me starting a medication to help improve my balance, coordination and walking. We also talked about changing my MS medication. With the new medication, there’s a chance I may be able to omit three of my existing medications.]

Official:
There is no cure for MS. However, there a number of “disease modifying” medications that can reduce the frequency and severity of attacks.

DMT (disease modifying therapy) medications can result in less damage to the brain and spinal cord, slowing the progression of the disease. Some medications are oral, some are injectable and some are delivered via IV infusion. The dosage of these medications range from daily to monthly. Each medication carries a variety of side effects.

For a list of medications for MS and additional information regarding the medications, visit: http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Brochure-The-MS-Disease-Modifying-Medications.pdf

When an attack (aka: exacerbation, relapse) does occur, high-dose corticosteroids (Solu-Medrol) can help reduce the length of the attack.

There are many medications available to manage troubling MS symptoms, such as muscle spasms, incontinence, and pain as well as depression and sexual dysfunction.

Physical therapy, occupational therapy and speech therapy are complimentary treatments.

∗ Since MS adversely affects balance and coordination, physical therapy may be prescribed to help strengthen muscles and learn strategies to combat the lack of coordination and balance.

∗ Occupational therapy may be prescribed to help with strategies for dressing and energy conservation for daily activities.

∗ A speech therapist can help if experiencing trouble speaking or swallowing,

Assistive devices (ie: cane, walker, shower chair, wheelchair) can help make daily tasks less difficult especially for those who are unsteady or easily tire.

It’s important to keep stress at a minimum as it can aggravate MS symptoms.

Heat can also aggravate MS symptoms. It’s important to remain cool and avoid hot showers, hot tubs and heating pads.

I know … that’s a lot of information to take in. Hopefully, it has given you some insight – AWARENESS – to this debilitating disease.

I strive daily to overcome and remain … Mighty Strong and Victorious!!!!

MS AWARENESS 5



Below, I’ve listed several websites with a wealth of information that you may find helpful.

National Multiple Sclerosis Society – http://www.nmss.org
Multiple Sclerosis Association of America – http://www.mymsaa.org
MultipleSclerosis.net – http://www.multiplesclerosis.net
Multiple Sclerosis Foundation – http://www.msfocus.org

 

 

 


 

[1] http://www.webmd.com/multiple-sclerosis/ss/slideshow-multiple-sclerosis-overview

[2] http://www.nationalmssociety.org/What-is-MS

[3] http://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/diagnosis-treatment/diagnosis/dxc-20131901

[4] http://www.webmd.com/multiple-sclerosis/guide/multiple-sclerosis-understanding-the-differences-in-ms

[5] http://www.webmd.com/multiple-sclerosis/guide/multiple-sclerosis-understanding-the-differences-in-ms

[6] http://www.webmd.com/multiple-sclerosis/guide/multiple-sclerosis-understanding-the-differences-in-ms

[7] http://www.webmd.com/multiple-sclerosis/guide/multiple-sclerosis-understanding-the-differences-in-ms?page=2

 

 

 

 

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December 31, 2015 / 11:15 PM

Where did the time go? It seems like just yesterday we were welcoming 2015. Here we are … about to welcome 2016.

Amazing! 2-0-1-6!!!

I love how a new year holds a new hope and a new outlook. It’s a fresh start.

As much as I’m not thrilled another year has passed (that always means ANOTHER birthday … to be more precise … getting older). I have to say I’m excited to start a new year.

********

Nearly all of 2015 I spent adjusting to a new MS diagnosis. Of all things to develop or contract, MS was not even a thought.

I have cursed it more times than I can count! Let’s just say, I’ve done A LOT of cursing!

I strive to pretend like it’s not there, but it is insidious. It’s changed my life in so many ways.

Walking is a huge challenge. For the most part I start out the day good but within a short period of time I walk as if I have been drinking for days.

Dancing. Dancing with my husband has always been one of my most treasured activities. I have danced since I was about 4. To have a partner who isn’t afraid to dance in public and actually enjoys was a dream come true. Since MS invaded my life, dancing has been placed high on the “hope to do again someday” shelf. We continue to try a slow 2-step or even a slow swing dance, but my balance is too disrupted. I long to glide across the dance floor to Lady Antebellum’s “Need You Now” with the love of my life.

Not that running was ever my “thing”, I couldn’t run even if I needed to. I sure hope a zombie apocalypse doesn’t happen any time soon. (The Walking Dead fans will understand.😉)

All my activities are planned to optimize my ability to get through them with minimal distress and discomfort.

********

So, why am I looking forward to a new year?

It’s the new hope.

Not that my diagnosis has changed — it’s what it is.

I am making changes to make the quality of my life better. (I was so angry and frustrated before I couldn’t see past it.)

I’m taking control and becoming my own advocate. If I don’t, who will?

I am DETERMINED to build my strength. I am DETERMINED to regain control of my balance & movements so that my husband and I can once again glide across the dance floor.

I am DETERMINED to make 2016 the best year – MY best year!!!!

Happy New Year!

My MS-iversary

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.

Acceptance

in the blink of an eye

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 1st 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.

CycleOfAcceptance_Diagram

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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

No Hair in the Drain!

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!!!!

FullSizeRender (5)

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

The “IT” That Changed My Life

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 19th.  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!

We-dont-know-how-strong-we-are-until-being-strong-is-the-only-choice-we-have.-Multiple-Sclerosis-Awareness