Embrace the Journey: Get a Grip

Home Base

“Okay, so we are still testing Positive. Well, at least we have two nights in Rome reserved. Wish we had gotten three. The Airport Hilton will be a central home base till we test Negative.”

One problem was fixed but the Covid problem lingered. Testing Positive hung over us like a heavy dark cloud. We became intimate friends with the airport during our five night stay at Hilton. One by one, we found the places we needed: rental car return, the train station, the Uber pick-up spot, food and restrooms accessible without doing security, a pharmacy and most important, the make-shift Covid testing site.

Lobby was usually packed with travelers

We arrived on Friday and the beginning of a sold out situation at the hotel. In addition to a conference, vacationers on religious holiday, a wedding party and the beginning of summer. People without rooms were trying to get a room. We had reservations for two nights but needed more. Our room wasn’t ready, but we were check-in and luggage stored.

New problem was getting more nights here. Donnie said, “Don’t worry. I’ll call Ramona to get her on it and I’ll keep on it as well. Let’s get lunch and head to the airport.”

Mall was a disappointment

Our first day was like a ‘broken play” in sports. The airport wasn’t close to anything. Transportation was either train, taxi, or Uber. I said, “Donnie, why don’t we check out the mall Ramona said is close. I don’t need anything, but it might be interesting to see what stores an upscale Italian mall has. You can practice using Uber.”

After finding the Uber pick-up place, the Uber ride itself was nice. We both thought Uber driver was taking us on a wild goose chase through literally nothing of note. We had envisioned an interesting mall with boutiques, restaurants and windows dressed with intriguing fashions and merchandise. What we got was a long ride ending at a strip mall identical to any in the states. 

It was already hot outside. We were disappointed and didn’t want to waste anymore time or money. Almost in unison we said, “This is not what we were looking for. Sorry, please take us back to the Hilton.” Uber driver wasn’t happy. 

Express Train

We spent the afternoon researching our trips to Rome. We had at least two days to tour there. Our objectives were to learn how to ride the train; see Vatican City; walk around to get the feel of this ancient city. We did our research, on foot in the airport.

Big signs promoting the Express Train going to Rome in thirty minutes were everywhere. The train station itself, was harder to find. 

Terminal A 

We started inTerminal A where our outside path led us. Inside, we looked around for train signs. There was nothing. “Wonder how we find the station. Surely there’s a way to get there without going through security. There’s an information place, let’s ask them.”

Of course, we were in the wrong terminal and on the wrong floor. We got directions and started walking. After many twists, walking sidewalks,  and different corridor tubes, we finally saw train station signs. Once in the doors, the ticket counter was easy to locate. It wasn’t a busy time, so the clerk patiently answered all our questions. 

Got a grip on mass transit

We were getting a grip on the airport. We noted our path mentally. We would get an early start on seeing Rome. Normally, our travel agent Ramona would take care of  everything. We learned that we could fend for ourselves and have fun doing it. We were slow but steady and gaining confidence. We would do Rome much like we did Civitaveccia and the Amalfi Coast. We got our daily mental exercise to boot! 

Embrace The Journey: Don't Get Stuck

First night out

I have posted several blogs about our dilemma and what proved to be a delightful “land cruise” on the Amalfi Coast. The experience was both memorable and stressful. 

We started in Civitaveccia, the port city, several days. We got lodging which was a valuable commodity at that time. We think we hit the beginning of a holiday in Italy. Securing lodging on a day to day basis was stressful. We tried to make the most of the nights we had in any one place.

Embrace the Journey: Plan an Adventure

We enjoyed breakfast at Hotel de la Ville

In Civitaveccia, we quickly realized we were on our own. In terms of priority, securing lodging every night would be Job #1. I felt confident Donnie and Ramona would handle it. We had to do self quarantine in Italy for who knows how long, so my job was to generate ideas for fun.

“Donnie, I’m glad you like the idea of driving to Amalfi! Ramona will find us a good place to stay. Meanwhile, there are good things to see in Civitaveccia. The railroad station looks interesting. That fort-like place across the way must have a story and Civitaveccia looks interesting.”

Embrace the Journey: Pivot and Redirect

Thinking positive in Civitaveccia 

Sometimes, you just have to pivot and go a different direction. Bad Karma had followed us from Lyon to our Mediterranean Cruise. Proof of vaccination, which is what we thought was all we needed, wouldn't do. We had to produce a Negative Covid test before embarking on the cruise ship. Donnie still had a sore throat. Could this be Covid? We used the self test kits we brought and sure enough he tested positive. Testing again at the port, he still tested positive. So, instead of cruising the Mediterranean, we were exiled to Civitaveccia. 

Embrace the Journey: It's Okay to Need Help

The Confluence Museé

Our next adventure was the Confluence Museé. It was promoted as a "must-see" tourist destination. The Museé was located at the southern tip of Lyon where the Rhone meets the Söene. It was very modern, large, cultural, historical, and an architectural sight.  

Donnie and I usually do museums, even big ones in a couple of hours. We saw inside and outside by early afternoon. I easily walked 13,000 steps, my daily goal. On the down-side, it was hot. I battled fatigue by going inside and sitting down.

We were hungry when we arrived. Then we explored all around looking for a cafe. Museums always have cafes, right? This one only seemed to have an expensive, sit-down restaurant - not what we wanted. Donnie was getting antsy, so Liz went off site in search of food. She returned with sandwiches. Not the lunch we envisioned. We ate our sandwiches on a bench while watching the sleeping Loleh.

Entrance to Park de la téte d'or

By mid-afternoon, Donnie and I were ready to leave, but how? “The plan” was to end the day at a BIG park. Philippe wanted more museum so we left him. He would join us at the park later. We rode the bus to the park, a nice respite.

When we got to the park, I was ready to walk again. This park was reported to have lots of unusual features. I was curious. My first impression was, “This is nice. I love the wide paths. Wonder where all the ‘good’ stuff is? Where are the bathrooms?” I was really focused on finding a restroom. We found what looked like some permanent porta potty.

(Aside: Restrooms didn't seem to be high priority here. We found Porta potty look a-likes. They were gender neutral, positioned side by side on the side of the wide path. The stainless steel potty had a rim to sit on. There was no toilette paper and no hand washing available. I rejected the facility.) 

Loleh preferred playing out of his stroller

I went in, turned around and came back out. I said, “Liz, surely there’s a restroom somewhere. This potty is not working for me.” We walked some more, seeing a lot of the park while looking for a real restroom. It was late afternoon and I was worn out. We had planned to eat leftovers in the refrigerator for dinner. 

We never found a restroom. My legs were really fatigued so I said, “Liz, can you help us get home? I’m too tired to enjoy the park today. Let’s do the park tomorrow when we are all fresh. Do you think we can get a taxi? I don’t think we are set up to do Uber.”

The busy corner with whizzing cars

Back at the entrance, rush hour traffic was bumper to bumper. Liz had no luck finding a taxi or Uber. Finally, we decided to walk toward a taxi area. We stopped at a bus stop.

“Let’s wait here? There’s a bench and maybe we’ll get lucky.” Time advanced as we analyzed our situation. 

"Donnie, this is bad! We don’t know where we are. Our phone is low on battery juice, and communication is challenging. Could it be any worse? Yeah, we could be stuck here all night. Maybe Liz will come searching for us. Wait, we have the only key to our place! Nobody can get in. That's really bad. Maybe we should call Liz to see what she suggests?”

Donnie said, “I already did. I’ve texted both but I’m not sure it’s going through.”

“Looks like we are stuck! This is when I curse MS! If I weren’t so weak, we would find a way to walk home. I'm sorry, my legs are done. Wonder how far we are? You do have the address, right?”

Resting after walking to the park

Very soon, a young man comes to the bus stop. I'm thinking, “He looks smart, maybe a student. I'll try speaking French to him.”  With my awkward French, I learned he was a student and spoke some English. He understood our dilemma. Then he proceeded to call at least three taxi companies before finding one that would come get us. No doubt he missed his bus. 

He insisted on staying with us until the taxi came. “I want to make sure you get in the taxi and he knows where you want to go.” We were so thankful and relieved!

When the taxi  arrived, before getting in, I gave him a big hug. “You are our Angel! Your mama would be proud of you. Thank you. We had visions of being here all night.”

The next day, refreshed and eager to try the park again, we walked to the park along the Söene river. Our scare was a learning experience on many levels with many lessons. We were reminded that it's okay to ask for help. There are really good people everywhere. We realized we aren’t ever totally helpless. We survived the crisis! 

Embrace the Journey: Bad Karma Happens

First outing in a Lyonaise Bouchon

Our big trip to France then Italy to start the Mediterranean Cruise was suddenly here. Since I don’t travel so much anymore and have health issues to manage, travel is really a big deal. I love everything about travel. I find it to be empowering, exhilarating, and worthy of documenting. 

We work with a travel agent to do the detail work and keep us straight. We trust her advice on everything. Usually, everything is perfect.

Embrace the Journey: You've Got to Want it!

In Annapolis 2021

It's been almost two years since I fell and fractured my hip. My recovery seems to be complete. I don't have pain anywhere and I feel like I'm close to where I was physically before the fall. Now with the foot operation being successfully completed, walking feels wonderful. 

The fall seems like a long time ago. It was, two years. Last year, 2021 I was trying to do "normal". We traveled, we helped  Liz, Philippe and Loleh move. We played with them for three months before they moved to France. It was a whirlwind year. The elusive "walking" was always lurking as a goal in my mind. This story is really about how I wanted "it" too much too quickly in 2020.

The Covid shut down was another factor. I didn't see my usual team of therapist until mid summer. I did what I thought best, not listening to my body or my doctor. Finally, Body said, "I'm done! Enough of this. You have pushed me over the edge so, I'll just shut down."  

Walker back in action

When Body gets like that, there is no negotiating. Walker was happy to come out of retirement. We became good friends again. Walker made me feel good and safe. My lower body, hips and legs were in too much pain to walk without support of upper body. 

I created this bad place. Doing my own rehab was not good. The short walks were fine. We would drive to the bottom of the driveway to start on the pavement. I needed Donnie’s hand for balance and support. By the end of the summer of 2020,  I had graduated to walking down the driveway. 

Walking up the driveway

Our driveway is challenge under normal conditions. It's steep, long (.01 mi.),  and made of shifty, gravel. When I wanted to go farther, Donnie would always remind me, "Don't forget we have to go back up the driveway." When it's hot and I'm tired, that hill is a demon. Doing the whole route of two miles was my goal. 

Getting adjustment from Dr. Keifer

Walking was fine, but I decided adding weighs would help me achieve my goal quicker. Body probably went on strike when I did one of my usual leg, core, or upper body weight exercises that I wasn't ready to do. Doing hot yoga seemed to be going well, but the weights were too much for Body. The pain factor dictated an emergency visit to my chiropractor.

Suddenly, my life revolved around fixing this pain problem. I was going two and three times per week for chiropractic treatments. At home, I did ice therapy several times a day. I eliminated yoga and walking for a week. Week two I was able to add walking and hot yoga. I didn't try adding weights until I consulted my physical therapist. Finally after a month, I could retire Walker again.

Walking on our usual route

The sad truth is that the whole body has to recover from injuries. I've learned this the hard way. I also acknowledge that age and MS contribute to how long it takes me to fully recover. Two years later, I am close to where I was before the fall. The goal of walking 2 miles has been achieved, but not consistently. It's still elusive. My new trainer Jeanne is giving me exercises and the strategies needed to increase stamina, endurance, and pace. Finally, I feel like I'm going to maybe go beyond that 2 mile goal and do it consistently. The best part is that my hips and legs don't feel exhausted when I finish.

Maybe working toward another goal of seeing grandson Loleh and walking miles and miles around Lyon, France was just the incentive I needed. The body is amazing. Hot yoga teaches that the body is good at healing itself. That's true but, it heals on its own time, not mine.  I wanted "it" quickly and imposed my own rules. What I got was a lot of pain. I know now that Body rules.  I am trying to be more mindful, but in case I irritate Body again, I'm still good friends with Walker. 

Embrace the Journey: Life is Fragile

Me at age 16, when I had Mono

How can this be? How did I get Multiple Sclerosis? I pondered that question many years. My explanation for all this time has been because of a bad case of Mononucleosis I had Senior Year of high school. 

That seemed reasonable because research at that time postulated that MS might be linked to a severe childhood disease. Hence, Mono weakened my immune system and allowed the virus to fester.

Me age 50 when diagnosed

For twenty years, I have used this bad case of Mono to explain how I thought I got MS. Now, science has established a link to the Epstein-Barr virus. aka Mononucleosis. My sister Penni who lives in Boston sent me an article from The Boston Globe, dated Monday, January 17, 2022 about this development. 

A group of researchers from MIT secured access to the military data base at Walter Reid Institute of Research. This huge population offered a high number of incidents they tracked over time. This gave the study tremendous credibility. The article compared this data base to the power of the Hubble Telescope. 

Tracking and monitoring Army recruits over twenty to thirty years was the key. Many recruits enlist in their late teens. If they got  Mono, like I did, MS symptoms would show up in their thirties or forties. Identifying and following these symptoms over such a long time was the key to establishing the link.

Hiking in California

I didn't have any issues in my twenties and thirties. I felt fine, had plenty of energy and didn’t have any major issues. I was in my mid forties when I began noticing irregularities with balance, walking, talking, vision decision making and thinking.   

Even then, I didn't slow down. After some near falls on steps, I became more careful. I was in my late forties when I noticed that I was bumping into people who were walking beside me. I would get so provoked! I blamed the other person for not walking straight. 

I traveled a lot in my job and drove all over the state. I started having problems staying awake while driving even in the morning after good sleep. I would chew gum, drink water, open the windows, sing with the radio. Still, I never thought to get checked. What finally got my attention was feeling weak with while walking on the beach. The sun was bearing down and it was hot. I was literally dragging my right foot through the sand. That’s when I pledged to talk with my doctor. 

After diagnosis I learned more about MS symptoms. I learned about typical symptoms of MS in cognitive, physical, physiological and psychological areas. I realized I should have been paying attention to recurring issues. The recurring yeast infections, frequent UTI’s were not normal. The stiffness in my joints, pain in my hips and jerky walking and headaches were not normal. I didn't acknowledge fatigue and muscle weakness. I think the most noticeable issue was my legs being out of control after about two miles of walking. My right leg was swinging way out and impossible to control. I wish I had paid better attention to physical issues. Maybe I would have sought help and been diagnosed sooner.

More fun cruising

The Globe article explained that brain inflammation is a common side effect of viral infections. It said that the millions of people who are living with what they call Long COVID are examples of inflammation. Red Flag! With MS, lesions form from inflammation on the brain causing issues around the body. I hope we won’t hear about high incidents of neurological issues from people who had Covid 19 twenty years from now.

Life is fragile. Sometimes recurring issues are not normal. My hope is that my story helps identify red flags. 

My personal goal is to live life to the max every day, take care of myself and stay vigilant.  I told Donnie recently, “I’m glad you are as committed to my health and your health as I am. We have things to do and I like doing them with you! Do you think we will live as long as  Mama, and Bucky and ‘V’? If we do, I hope we have our mind in tact like Bucky and Mama did. I do need to watch for falling. No more falls no COVID!”. 

Embrace the Journey: Help Where You Can

Screen shot of members 

 Lately, I have been wondering, “Why do I keep doing Toastmasters? There’s too many problems!"

In Four Seasons Toastmasters, we've already had two Presidents this year. Most recently, President Karen died suddenly. If it's not leadership, it's membership. So I ask myself, "Why do I keep doing this? Does anybody care about those minutes I do every Friday? I’m proud to get them up on our Toastmaster Blog so maybe that's enough. Hmmm. I’m actually challenged to see how interesting I can make them and how quickly  I can post  them. I sometimes get supportive feedback too." 

Embrace Your Destiny: Prepare for Dementia

Pictures before the workshop

Is it true? Just because I have MS, I am subject to Dementia? Sure, I sometimes can't recall names and misplace items. But, that's a huge leap to dementia!  The Alzheimer/ dementia experts say that it's true.

Molly Garnett, Chaplain at Pardee Hospital and Elder at Trinity Presbyterian Church conducted a two part Learning Hour program for caregivers. We  listened in denial as the Alzheimers and Dementia experts explained the issues. Then, as attendees shared personal experiences, the reality became clear. At the end, we acknowledged that dementia is a huge, unrecognized and under serviced issue.

The number of people being diagnosed everyday with either Dementia or Alzheimers was shocking. Added to that umbrella are people like me who have a neurological diseases, like Multiple Sclerosis or Parkinson's Disease. But that's not all! The big number also includes stroke victims, loss of hearing and eyesight and other chronic medical conditions. Caregivers, are vulnerable too.     Seniors! Beware

Embrace Your Destiny: The Future is Promising

Mealtime with Loleh 

Being on “hold” is so frustrating. We were “on hold” for two and a half months. The whole family has coped well, rallying around the spirit and joy of baby Loleh. While we enjoyed having time with Liz and family, everybody was ready to move on. Liz and Philippe to France and us right here.

This waiting saga started when Liz’s work Visa didn't come and didn't come. Finally it came after a three month wait. Next task was to get airplane tickets.

Liz said, “We got tickets leaving from Asheville next Thursday. Can you take us to the airport around noon?”

Poirot likes my office chair

Donnie said, “Of course! Are you really leaving from Asheville! That's amazing.” Of course, Liz’s Visa was not the end of challenges and waiting. 

During the three month wait, health papers for Poirot, the cat expired. New crisis! We had to find a USDA qualified veterinarian to do a rush certification for a new customer and turn it around from USDA in Washington almost overnight. It was overwhelming. All of our spirits sank to a new low. Up and down again.

Daily yoga practice rebooted my spirits and my body. I would have been a basket case physically, mentally and psychologically. Every morning we set the alarm early enough to do yoga. It’s that important.

Morning yoga in my space

When I get up in the morning, I check in with my body. “What’s going on shoulder? Did I sleep on you wrong? Hip? What’s your deal today? You’ve been being stiff, but you seem worse today. Let’s hope yoga can fix you up. Self, what’ is going on with your sad mind? Why are you sad today? I’m sorry but that’s unacceptable. Let’s have an attitude adjustment during yoga. It can happen if you are open minded.”

We have a favorite yoga YouTube video for hot yoga. We practice with Ron from a studio in Delray Beach. By the time he finishes the four warm-up postures, my shoulders and hips say, “We are doing better. What issues?We are fine now.”

By the time we are on the floor for the first sevasana, I am mellow.  I let go.

Daily walks with Loleh 

Being "on hold" is a distant memory now. I have pictures to remind me of happy times walking with Loleh, playing with Loleh and watching him change everyday. That was very special. 

We are into a different realm of virtual hugs, quick visits on What'sApp, and text messaging to stay connected. We miss them and that special time. However the future is bright. We have a trip planned to see them next Spring. While Loleh is getting stronger, I will be too. My expectation is that he will have fond memories of his time in the country playing with Grandma and Grandpa. His experience here when he visits will be so different than in Paris. We are hopeful he will pester his parents to come visit often!