Category Archives: Uncategorized

f a l l i n g

Did you ever fall down as a kid?

I did. The one that made the most impact on me occurred at my aunt and uncle’s house. All the kids were outside riding skateboards down their long, curved driveway. I was the only girl in the group. I couldn’t let the boys have all the fun. I grabbed one of the skateboards and took off down the hill. One of the wheels hit a rock, I went flying off the board and landed on the concrete. I ended up with scraped knees and elbows. Thank goodness that was all. It could have been so much worse. Fortunately, I had no broken bones or head injury. (I wasn’t wearing a helmet. YIKES!) That was the last time I rode a skateboard.

As kids, we’re  growing, we’re awkward, we’re clumsy. We’re kind of expected to have falls.

Once we’re adults, that’s the furthest thing from our mind. When we have a debilitating chronic illness, avoiding falls is a top priority.

Unfortunately, I’ve had several falls since my MS diagnosis.

The first one was embarrassing as it happened in front of other people! I was stepping up onto the curb at my local CVS. I didn’t get my leg raised quite high enough and caught my foot on the curb. DOWN I WENT! I pulled myself together, got up, and went about my business.

While most falls are scary, there are some that can actually be quite funny. Like the one I had while visiting Skip in when he was working in Connecticut.

It was early in my diagnosis. I really hadn’t grasped the idea I couldn’t do things the way I always did. We went to meet some of his work mates at a restaurant. The parking lot had been plowed after a snowstorm. The snow was piled in front of the parking spaces. I attempted to step onto and over the snow pile. I lost my balance and proceeded to slide down the small incline backward on my back landing in a hole. It happened so fast! I was laughing hysterically. <Picture a turtle on its back with legs flailing in the air. That was me!> Laughing made it even more difficult to get up. It was a sight for sure! (Skip loves telling this story! LOL)

Sometimes I don’t know whether to laugh or cry. On our first day in California, Skip had to go to the office and I was on my own with the puppies. Well, they weren’t puppies … they were 80 pound pitties! They got excited and knocked me over when I was using my rollator while we were outside. I couldn’t get up. I had to call 911. The fire department came to help me. I was so embarrassed! On the plus side, I got to see some cute firefighters!

My fear in falling is getting seriously hurt. I came pretty close when we were in Louisiana. While there I sustained two of the most frightening falls.

  • The MS has blessed (sarcasm) me with foot drop. As a result my feet constantly get “stuck” when I’m walking. This particular time, my left foot got stuck on the carpet in the bathroom. I tripped and fell against the corner door casing with my back. I ended up with large bruise on my back.
  • We were packing to make another move. My foot got stuck on the carpet again. I fell forward onto the handle of my scooter then I lost my balance and fell back against the TV stand. The TV almost tipped over on me, fortunately Skip caught it.


Three weeks ago, I had a true 𝐼’𝑣𝑒 𝑓𝑎𝑙𝑙𝑒𝑛 𝑎𝑛𝑑 𝐼 𝑐𝑎𝑛’𝑡 𝑔𝑒𝑡 𝑢𝑝 moment.

My legs collapsed while I was getting off the toilet at 1 in the morning. I didn’t have my phone with me. I had to “crawl” to my nightstand to get my phone so I could call my daughter. Let me tell you, I can’t crawl. My stupid MS legs don’t move. It took me over 20 minutes. My knees were raw!!! Mind you, my PJs were down at my ankles. I was completely exposed! Not a pretty sight! Once I got ahold of my daughter and knew she & her husband were on their way, I worked diligently to pull my PJs up so they wouldn’t have to see my bare behind. They arrived and helped get me up and back onto my scooter.

Scared. Hurt. Humbled. Humiliated. Embarrassed. Disappointed. Angry!

I can honestly say I hate this! The vulnerability. I’m 57. I have MS.

I DON’T WANT TO HAVE MS! (I want my old life back!!!!)

I don’t want to think about falling. After all, what you think about you bring about it. Yet I have to think about it.



PS: I now keep my phone with me no matter what!



March is MS Awareness Month


A description of my recent MS Flare.

Oh, happy day! I just finished the fifth and final Solu-Medrol steroid infusion for an MS Flare. I have no clue what precipitated it but as with everything MS, it’s a mystery.

Two weeks ago, I was sitting in my scooter working on my laptop, listening to the TV and all of a sudden it felt like there were a 1,000 rubber bands being tightened around my right lower leg. It felt like it was “asleep” and numb. At the same time, my left hand and fingers went numb. (There’s always and underlying numb sensation, but it was more pronounced.) On top of it, my ENTIRE BODY WAS IN EXCRUCIATING PAIN!!!!!! AND, I had been unable to sleep for days. Not good! You know what happens with lack of sleep?????

Multiple sclerosis (MS) flare-ups are distinct, sudden episodes of either new symptoms or a worsening of existing symptoms. They are characteristic in  relapsing-remitting MS (RRMS), which is marked by recurrent acute flares (relapses) followed by partial or complete recovery (remission).[1]

A flare-up may consist of one or more symptoms that last for at least 24 hours and up to weeks or months. To be a flare-up, symptoms must be specific to MS and not due to other factors, such as an infection. Two distinct flares-ups are separated by a remission period of at least 30 days.[2]

[Flare-ups also are known as attacks, relapses, episodes, or exacerbations.]

Since the symptoms need to last for at least 24 hours, I had to wait to reach out to my neuro until the next day to discuss the issue with her. I did. Unfortunately, she was out of the office until MONDAY! ARGH!!!

She was reactive and jumped right on it. She set the wheels in motion and got the script and home health ordered to start the five-day infusion.

The home health nurse arrived to start the IV. I tend to be a hard stick. This time was no different. I ended up with a blown vein on my left forearm and giant bruise. Boy does it hurt!

She had to call her supervisor to come out to start the IV. She got it on the first try. For five days, I had an IV needle in my right forearm. Not the most fun but definitely better than being stuck every day.

After the first infusion, I felt a difference. AMAZING. By the end of the day, the pain was subsiding and that night I was finally able to sleep. My right leg is feeling much better.

Unfortunately, one of the lingering effects that is driving me crazy is a headache! It feels like the old migraines I used to get. Nothing is helping.

The only way we’ll know if this was a true relapse with progression is when I have my next MRI.

Considering this is the first time I’ve had to undergo a round of steroids in over three years, I think I’ve done pretty darn good.

Now to get rid of this stupid headache!



Did you know …

… March is MS Awareness Month? That’s right! It’s Multiple Sclerosis Awareness Month.

It’s been far too long since I’ve posted. Since it’s MS Awareness Month, I thought I’d take a couple minutes to share a little bit about the disease and update you on how I’m doing.

MS is a disease of the central nervous system (CNS) – the brain and spinal cord – in which the immune system attacks the protective sheath (myelin) that covers nerve fibers and causes communication problems between your brain and the rest of your body. Eventually, the disease can cause permanent damage or deterioration of the nerves.[1]

Multiple Sclerosis can take years and many tests to be diagnosed. One of the reasons for this is because the disease does not present itself the same way in each person. Plus, symptoms differ depending on the nerves that are affected. That’s what makes it so tricky to diagnose!


Here’s a list of common symptoms: 

  • Numbness or weakness in one or more limbs that typically occurs on one side of your body at a time, or your legs and trunk
  • Electric-shock sensations that occur with certain neck movements, especially bending the neck forward (Lhermitte sign) … OFTEN TIMES, THIS IS ONE OF THE FIRST SIGNS!!!!
  • Tremor, lack of coordination or unsteady gait

Vision problems are also common, including:

  • Partial or complete loss of vision, usually in one eye at a time, often with pain during eye movement
  • Prolonged double vision
  • Blurry vision

Symptoms may also include:

  • Slurred speech
  • Fatigue
  • Dizziness
  • Tingling or pain in parts of your body
  • Problems with sexual, bowel and bladder function

I experienced the Lhermitte Sign at least two years before official diagnosis. I thought I had a pinched nerve in my neck. I sought chiropractic treatment and it went away. I never thought about it again until I had full-on CRIPPLING muscle spasms on the right side of my body that sent me to the hospital. I also had unexplained dizziness when I bent over. You can read my diagnosis story here:

If you have any of these symptoms or unexplained symptoms, PUSH YOUR DOCTOR to do brain and spinal cord MRI’s on a 3T MRI machine AND a lumbar puncture. If you have lesions on the brain and/or spinal cord, the MRI will show it. The cerebral spinal fluid will have Oligoclonal Immunoglobulin Bands; the level most likely will be elevated if in a relapse.

Don’t stop until you get answers!


Relapsing-Remitting MS (RRMS) — This is the most common type. It is characterized by clearly defined attacks of new or increasing neurologic symptoms. These attacks – also called relapses or exacerbations – are followed by periods of partial or complete recovery (remissions). During remissions, all symptoms may disappear, or some symptoms may continue and become permanent. However, there is no apparent progression of the disease during the periods of remission. RRMS can be further characterized as either active (with relapses and/or evidence of new MRI activity over a specified period of time) or not active, as well as worsening (a confirmed increase in disability following a relapse) or not worsening.[2]

Secondary Progressive MS (SPMS) — SPMS follows an initial relapsing-remitting course. Some people who are diagnosed with RRMS will eventually transition to a secondary progressive course in which there is a progressive worsening of neurologic function (accumulation of disability) over time. SPMS can be further characterized as either active (with relapses and/or evidence of new MRI activity during a specified period of time) or not active, as well as with progression (evidence of disability accumulation over time, with or without relapses or new MRI activity) or without progression.[3]

Primary Progressive MS (PPMS) — PPMS is characterized by worsening neurologic function (accumulation of disability) from the onset of symptoms, without early relapses or remissions. PPMS can be further characterized as either active (with an occasional relapse and/or evidence of new MRI activity over a specified period of time) or not active, as well as with progression (evidence of disability accumulation over time, with or without relapse or new MRI activity) or without progression.[4]


Though there is no cure, there currently 22 disease-modifying therapies (DMT’s) that have been found through clinical trials to reduce the number of relapses, delay progression of disability, and limit new disease activity (as seen on MRI).[5]

Injectable medications:

Oral medications:

Infused medications:

I started with Aubagio, then moved to Tysabri but developed neutralizing antibodies that prevented it from working. I only had 5 or 6 doses. After Tysabri, I received two rounds of Lemtrada one year apart. I am now back on Aubagio. My new neurologist, Dr B, wanted me to take Mavenclad but my absolute lymphocyte count is far too low. It has to be at least 1,000. Since the Lemtrada, the count hasn’t been above 500. That is one of the reasons I’m on Aubagio right now. We’re waiting on the count to increase. She has spoken to me about a clinical trial for a new drug. I haven’t decided what to do yet.

More therapies are being developed all the time. WHAT WE REALLY WANT IS A CURE!!!!

Perhaps if researchers could pinpoint exactly what causes MS, they could find a cure. They believe there are a combination of factors. You can read about them here:


Overall, I am doing well.

My last MRI in September showed no progression so the Lemtrada did its job. It halted progression. Part of the monitoring for Lemtrada is blood draws for 48 months after last treatment. I have 11 more months of monitoring to go. So far, so good! YAY!

My balance and walking are still affected. Mainly due to my right leg and foot. I use a mobility scooter to navigate wherever I go. (The house we are currently in is very spread out, so I use it in the house.) While I technically can still drive and go where I want, I choose not to. It is too exhausting plus I need the scooter, which I’m not able to maneuver on and off the lift gate on my own. So, I stay home tending to the puppies, taking care of the house, and keep myself entertained with my crafts. Oh yeah and make Skip’s dinner. LOL!!! I also help my Mary Kay Sales Director with preparing her unit newsletter and creating graphics.

I made an accommodation to my sewing machine operation. Rather than depress the pedal with my right foot, I now operate it with my right arm/elbow from the tabletop. Challenging at first, I do incredibly well with it now. Check out my Instagram (@vickiwayne) for pics of my projects.

I am trying to remain as independent as possible.

There are some things I need help with though. Most often the thing I need help with is putting my pants on over my feet and taking them off over my feet. Those two things are tough!!! Who knew????

My guy is a real trooper. He is hanging in there. I know it’s not easy … I know I’m not easy. He stands beside me, supports me, and only wants the best for me.


You know what???? I have hope! Hope that I’m going to recover and regain use of my leg and walk again without the use of assistive devices.







Observation: Things to Think About


Last year when I had a big lull between posts I vowed I would remedy that. I had every intention to keep writing and log my journey. So why didn’t I?

Let me tell you … there is myriad of reasons. Each time I sat down to start writing my mind wondered. I could not think of anything. Of course, there were PLENTY of things to write about, but I could not think of anything of significance … anything that would make a difference … an impact … on anyone.

So, why today? Why am I writing today?

I honestly don’t know.

Maybe it’s because the 3-year diagnosis anniversary was the 10th. (Yep, it’s really been 3 years!)

What do I share with you?

I could moan and groan and tell you all about the walking difficulties … or my left hand is constantly numb … or that using a motorized scooter at the grocery store and Walmart is completely humiliating (you should see the looks I get) … or how showering and dressing is completely exhausting … or doing simple tasks such as cleaning the bathroom or vacuuming & sweeping the floors are so difficult I’ve had to resort to hiring someone to do those things for me … or that I’ve had 5 falls since January … or how much weight I’ve gained because of the inability to sufficiently exercise … or standing and moving about the kitchen preparing dinner causes an extraordinary amount of pain I can barely move by the time I’m done … or … or … or … but who wants to read that?

How about the observations I’ve made? That’s it! I’ll share the observations I’ve made!

Chances are most people haven’t even thought of these things …

• In many public places (department stores, movie theaters, etc) the handicap bathroom stalls are at the very end of the line of toilets. Now this may not seem important. I can assure you it is! Every single step a mobility-challenged person takes is a BIG DEAL. Those extra steps could be all the difference in “making it” or not. (For curious minds … I have not NOT made it. There have been some close calls though. 😉)

• I don’t have a problem with anyone using handicap bathroom stalls. Just be cognizant of who is waiting to use the one and only handicap stall. Get in and GET OUT!!!!

• Note to public restroom designers:
– All doors need to open out at the very least. Ideally, they should be double acting doors. This will sufficiently allow those with walkers and wheelchairs to get into the stall.
– Stalls need to be wide enough for someone to get in with a walker or wheelchair. (Does not necessarily need to be the size of a typical handicap stall.)
– Place toilet in center of stall, not next to the wall. HELLO … COMMON SENSE!!!! This will allow for correct placement of toilet paper holder so that it is not right on top of the toilet.
– Install handicap toilets in all stalls. No matter who uses the stall, the person will be able to use the toilet without risk of falling onto the toilet or strain to push herself up.
– All stalls should have grab bars. This is a safety measure and should be common sense.

• Many businesses have come a long way in ensuring all customers have access into and out of their establishments. They’ve installed ramps and push buttons to open doors. HOWEVER, THE VAST MAJORITY OF BUSINESSES ARE CLUELESS!

For example, the handicap parking spots at my local SteinMart are on the side of the store rather than the front. Why the big deal? The handicap spots are SIGNIFICANTLY further away from the door than the parking spots directly in front of the door. Yes, those extra steps make a HUGE difference! I can’t park in front of the store though. The curb is far too high to step up and lift my walker up without risk of falling. Stepping down upon exiting is even riskier. It would be the same for anyone with mobility issues.

• In addition to poorly place handicapped parking space location, there are not sufficient handicap parking spaces. In my opinion, the first 5 – 6 spaces in EACH ROW need to be handicap. Not just the two rows in front of the door(s). At all businesses. INCLUDING DOCTOR OFFICES!!!

Would you believe there are only 6 handicap parking spaces at the medical arts building where my PCP is located? 6!!!!! That is just absolutely ridiculous!!!!!!

• Like I mentioned above, many businesses do a great job with ensuring all customers have access into and out of their establishments. However, they could do better! How? Automatic doors should be standard equipment at all businesses on all exterior doors and restroom doors. Since it is difficult for me to maneuver a walker in and out of a door, I know it’s even more difficult for someone in a wheelchair. Accessibility is a must!

If it had not been for the kindness of a stranger, I would have never been able to get into the restroom at Macy’s! She waited for me to use the restroom so she could help me exit.

• Just like parking spaces being further away from the door, so are the handicap ramps. EXTRA STEPS MAKE A DIFFERENCE! Need I say more?

I’m sure you’ve guessed the less steps to accomplish a task, the better. It goes a long way in energy conservation … and being able to make it through the day.


Why have a step-up curb at all? Why can’t the door and parking lot be on the same plane? This makes more sense and more cost effective anyway. In addition, less chance for someone to trip on or fall off the curb.

I wonder what it would take to advocate for these changes? Where would I even begin? Hmmmm … let me think about that. If you have any ideas, please let me know.

In the meantime, I keep pushing forward. PT, home exercises and the 2nd round of Lemtrada coming up at the end of January.







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.


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!!!!


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

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.


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’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!


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!



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!


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’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.


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!


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:

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


This is just too funny not to share:



AWARENESS – Shedding a Little Light on MS


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?

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.

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?

No clue. That is, until I was diagnosed.

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?

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

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


How is MS diagnosed?

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.”

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?

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.]

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:

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!!!!


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

National Multiple Sclerosis Society –
Multiple Sclerosis Association of America – –
Multiple Sclerosis Foundation –
















Happy 2016!


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!