Sharing everything that I have learned living with an illness: what has worked and what hasn’t. Sharing products, recipes and of course activities I have enjoyed the most with my son.
Ten years have gone right by my eyes, and I am sitting here with mixed feelings. I had been yearning for a good year for a long time, and I have to say, this year has been a very good one. As I backtrack, I am trying to decipher what has made this the best year thus far.
To start off, this is the year I took full control of Scleroderma. Scleroderma did not take over my life like in the past years. I am so happy to say I had no hospitalizations nor flare-ups that I couldn’t handle. I learned the hard way, but I never forget to carry a sweater, pack hand warmers, or gloves to avoid finger ulcers. I listen to my body closely, and if I felt exhausted, I rested. If I needed help, I asked for help. But, most importantly, I learned to say “no” when I couldn’t do something.
As I reflect on this last day of the decade, I realized I finally accepted Scleroderma (with everything that comes with it) as part of me. I am not scared anymore.
For twenty years, I lived assuming my life was going to be cut short. I obsessively read everything about this incurable disease I have, and I was scared to death. Without realizing it, I was living on the edge. I was focused on my physical changes, my weaknesses and nothing else.
In 2019, I learned to applaud my little successes. This year I measured my successes differently and did not have unrealistic expectations. I still had those bad days where I had no energy to do anything and I will continue to have them as a reminder of my illness.
By mid year, I found the best supportive community. I was ready to share my past and present journey as a single mom with a chronic illness. Through social media, I met and learned from many warriors. I have made great connections with many by reading relatable stories, inspiring stories as well as product recommendations that have made my life easier. Joining this community has inspired me to keep moving along through life’s obstacles.
I am excited to start a new decade. I have gathered the tools and strength I need to take on 2020. I am ready to take on the good, the bad and the ugly with a positive attitude.
This summer, the movie theaters have been sizzling hot with the releases of “live action” movies for our iconic original animated movies and shows. It all started with Aladdin followed by Lion King. Now it’s Dora the Explorer’s turn.
When I heard about Dora and the Lost City of Gold, I was very curious to see how they would incorporate the essence of the beloved children’s animated show into this live action movie. I had a chance to screen the movie and I am surprised at how much fun it was. There is tons of laughing throughout the entire movie and great child-approved suspense to keep you held to your seat. It was nice to see the unforgettable characters, Boots, Backpack and Swiper the fox, take their roles in the movie. It comes with a takeaway lesson to be who you are. I enjoy movies that share cultures and this is definitely one!
When it comes to movies sequels, I am always hesitant if I should watch it. The expectations are always high and if they are not met, we have a big disappointment. It happens pretty often. The 1995’s Jumanji movie was one of my favorite movies of all times until the first sequel Jumanji Welcome to the Jungle hit theaters in 2017. It was hilarious and so clever how these new characters made the return of Jumanji after 22 years!
This week I had the chance to screen the second sequel, Jumanji The Next Level, which will be available in theaters December 13, 2019.
I have to say, this movie is hilarious from start to finish. The additional cast to this sequel was pleasantly amusing but I have to admit my favorite addition was Danny DeVito. If you haven’t seen the first sequel, don’t fret. This is a completely new movie and they do make references to anything you should know.
So in a nutshell, Spencer fixes the Jumanji game and goes back into the game alone. His friends go back into the game to bring him back but while traveling into the game two other characters mistakenly go with them. It is definitely a crazy mishmash of game characters but undoubtedly funny. They are in the “next level” of the game which is completely different than what they had experienced in the past. This is definitely a great movie for everyone starting with tweens. It can be confusing for younger children to follow along.
Don’t miss it and head to the theaters on December 13, 2019!
The cold, brisk weather in NYC couldn’t be more perfect for a cup of hot chocolate and a Christmas movie night! Every year Matthew and I gather around the TV to watch holiday movies. Of course, some movies we’ve watched a million times but we are always surprised with new ones every year. With so many streaming services available, it is so easy to watch a lot of the classic holiday favorites as well as enjoy new and original movies that are making their way into our hearts. I also own a lot of movies that might be hard to find. We love to have a movie on as the background as we wrap gifts or any holiday activity!
Here is my 25 favorite holiday movies you shouldn’t miss this year! I included two new ones this year Noelle, an original from Disney+, and Klaus, an original from Netflix. Can’t miss them!
Yes, Virginia, There Is a Santa Claus – Rated G
Home Alone (1990) – Rated PG
Rudolph the Red-Nosed Reindeer (1964) – Rated G
Frosty the Snowman (1969) – Rated G
Elf (2003) – Rated PG
The Polar Express (2004) – Rated G
Miracle on 34th Street (1947) – Rated G
Jingle All the Way (1996) – Rated PG
How the Grinch Stole Christmas (2000) – Rated PG
Disney, The Christmas Carol (2009) – Rated PG
Disney The Nutcracker Four Realms (2018) – Rated PG
Noelle (2019)
Klaus (2019)
Arthur Christmas (2011) – Rated PG
The Santa Clause (1994) – Rated PG
A Christmas Story (1983) – Rated PG
A Charlie Brown Christmas (1965) – Rated G
Disney, Mickey’s Once Upon a Christmas (1999) – Rated G
The Star (2017)
Elliot the Littlest Reindeer (2018)
Disney, Frozen (2013) – Rated PG
The Elf On The Shelf Presents: An Elf’s Story (2011)
Jack Frost (1998) – Rated PG
Disney, The Muppet Christmas Carol (1992) – Rated G
The holidays are here! It’s exciting because there are so many things to look forward to like family gatherings, school shows, local holiday events, holiday work dinners, church potluck and gift giving. And, that’s just to name a few because there are many more.
This time of the year can easily turn into an overwhelming period. I have always wanted to take part in all the holiday events. I have to admit that in past years, I pushed myself until I was completely out of energy. Living with a chronic illness definitely makes it hard to enjoy this season. There are many factors that are important to consider and so planning early is helpful.
Many years ago, I participated in everything that came across my way, I contributed baked goods to gatherings, and walked around for hours to find the perfect gift for my family. I assumed that it was necessary to partake in everything this way. At the end of the day, I didn’t feel satisfied, I felt ill and tired; definitely not happy. I still feel the urge to join in all the fun this holiday season, but I am planning to slow down and stay rested.
Here is how I try to enjoy the holiday while staying rested with energy.
PICK AND CHOOSE YOUR EVENTS TO ATTEND
As much as I want to go everywhere, I know that my body can’t handle it. Start by sorting and prioritizing events you want to attend. It’s ok to not attend to all the invitations. Take in consideration:
– Length of the commute from door to door (I always ask myself “can I handle it or will I be exhausted by the time I get there”)
– Weather (I have raynauds, so if it’s a family ice skating gathering, it’s a NO for me)
– Emotional value (Is it your child’s performance or a visit to a family member or friend from out of town; I would add to my calendar)
GET HELP, DON’T TRY TO DO EVERYTHING
Sometimes, we are caught doing everything. I try to keep in mind that I do not have to do all the holiday decor alone, bake cookies for school or church or wrap all the gifts on my own. It’s ok to get all the help you need. Try to:
– Delegate some assignments to friends and family. (get your holiday decor out from storage, get your dinnerware out for a holiday dinner, etc)
– Bring store-bought pastries and meals to your gatherings. It’s the thought and your presence that counts. (don’t spend hours baking or cooking, it can’t get very exhausting. I know it’s tempting to bake when social media makes it look so quick and easy)
START PLANNING EARLY
Do not leave everything for the last minute. Plan:
-Gift list (If you plan to give or send gifts, plan your list early. It gives you time to shop on time and avoid the rush)
-Shop stores or online (Do it early, keeping in mind the shipping time)
-Gift Wrapping (Do not wait to wrap everything all at once, it’s exhausting)
DO A FEW MEANINGFUL THINGS
Focus on doing meaningful activities. Think about the things you can do from the comfort of your home. -Organize a Secret Santa
-Prepare and send your greeting cards
-Have holiday music in the background and play board games with the family
Disney World is a captivating place where without a doubt you create memorable moments. The background music that welcomes you to Main Street and the friendly cast members throughout the parks make your visit magical. The unique musical shows, parades, fireworks and ride experiences keeps us wanting to go back to Disney over and over again! But lets be honest, Disney World can also be overwhelming! To start, there are long lines at the entrance to get inside the parks and then we need to deal with the long wait times for rides. Also, walking in the sweltering heat (and sometimes in the rain) from one place to another, through the crowds of people, is tiring. But, after going this summer, I can attest that it’s all worth it!
Living with a chronic illness like Scleroderma challenges me daily when I step outside. To think of a trip to Disney felt quite unreal. As a Disney fanatic, I had done trips to Disney World prior to getting very ill, so I had a vivid memory of how chaotic it gets but also how much fun it is. I wanted my son to create these magical memories, too.
After a lot of research and contacting the disability services at Disney, I felt comfortable enough to visit the happiest place on earth and so I booked my trip. I was surprised to find out the protocols Disney parks had in place for people with non-apparent disabilities. This information isn’t shared as much as it should be and it meant so much to me when I made a decision. I felt it was my duty to share this valuable information I have learned and used.
Planning a trip isn’t easy when you need to consider time for medication, resting periods, and plan for the unknown (this past August, we were caught in hurricane Dorian’s path and needed to rush out of the area before our vacation ended). But it does feel good to know that you are welcomed and they make an effort to make you as comfortable as possible.
DISNEY PARKS DISABILITY ACCESS SERVICE CARD
The DAS card was extremely useful and I would recommend anyone with a chronic illness to use one. It helped me avoid lines to the rides of my choice (only for rides that had fast pass privileges). When I presented the card at the ride entrance, a crew member provided me with a return time. While I waited for my return time, I found a bench with a shade and took a break. I have chronic fatigue and interstitial lung disease so this card was on point with my needs. The DAS card allowed me to ride and create memories with my family at my pace.
The DAS card is available at the Guest Relations in every park. You will have the opportunity to discuss your medical challenges with a member of guest relations.
FAST PASS
I also used the fast pass (the ones that come with your purchased ticket) in addition to your DAS card. This allowed to reserve a return time for other rides was able to get return dates through the app.
FIRST AID CENTER
The first aid center at Disney World was probably what convinced me of stepping out of my comfort zone and visit the Disney parks. I have to say, I was very lucky on this trip that I didn’t need to visit the center but I was comfortable knowing it was available if I needed it. But, I was so grateful to know that there was a nurse available on site. The center can hold your medical equipment, health supplies and refrigerate your medication if needed. There are cots available if you need to lay down or rest. You can also monitor your blood pressure as well as take your treatment in semi-private areas. There isn’t too much information on their website about the first aid services that’s available. I learned this information after my phone call with Disney disability services. It’s quite help to know you can stop by for a free bandaids, over- the-counter medication like Tylenol and ice.
ELECTRIC CONVEYANCE VEHICLE (EVC) RENTALS
Electric conveyance vehicles are available for rental.
SHADE AND RESTING STOPS
There is seating and shade throughout all the parks with the exception of the Star Wars: Galaxy Edge in Hollywood Studios. I went to Galaxy Edge on the opening day and there was definitely no seating with shade in the vicinity of the entrance. Per Disney, they have added more seating since August. Otherwise, seating and shade was no problem throughout the parks
My son and I had a magical time. I am hope that my experience to Disney World helps others feel comfortable when making a trip to Disney World.
Years ago, when I was still working full time and Matthew was a preschooler, traveling was not my priority. I knew that traveling with a young child would be challenging and I didn’t want to add more stress to my Scleroderma flares. It just didn’t seem like it was the right time. I always imagined that when Matthew would be older, it would be easier to travel. I also thought that I would miraculously regain energy over the years.
Unfortunately, living with an illness like Scleroderma, I have learned that waiting for “later” is not the best idea.
I have to confess that for the past three years, I had been feeling bitter. I felt life was very unfair to me. I thought living with a chronic illness was already enough to bear. Three years ago, I retired from work and Matthew was no longer a preschooler; I had created a bucket list that shortly after, I knew I wouldn’t be able to accomplish (at least not as I had planned).
I was in a pretty bad shape right after retiring from work. My immune system was extremely weak, catching every possible virus, one after another. I had an annoying morning cough that wouldn’t go away, as well as awful heartburn spells. I was going to the hospital for testing every other day. A common procedure (but highly risky) like the right-heart cath procedure was one of those tests done so the doctor would confirm the pulmonary hypertension diagnosed for accurate medication dosage. Unfortunately, this procedure caused a pneumothorax, a full collapse of my right lung (one of the many risks of this procedure).
The pneumothorax was a scary and painful experience, but recovery wasn’t too bad. My body bounced back quickly and after a year, I was feeling great! My breathing seemed to feel better, the heartburn spells were under control with medication, and my immune system had gained some strength. I was then, ready for everything and anything on my bucket list!
A year and half ago, I was ready to get started with my bucket list. I was shocked when I was sharing my travel plans with my pulmonologist. She advised that traveling on a plane would put my life at risk because of the air pressure. The outcome of the right-heart cath procedure and the history of interstitial lung disease had put me on a high risk for another lung collapse. To avoid the painful chest tube and a life threatening scare, I had to avoid any air travel plans.
While listening to this bad news, I felt that one of the precious dreams I had to travel with my son had completely vanished. I had always wanted to take Matthew to Mexico to meet our extended family and show him the beautiful places I had experience as a child. I was so disappointed that I had waited so long. Most importantly, I was upset that I was depriving my son from something so fascinating and fun: experiencing other cultures and countries.
Scleroderma has taken so much away from me: my health, my career, my confidence. Taking away one more thing (traveling) that could possibly be fun and memorable was just upsetting.
Recently this year, I decided that my illness wasn’t going to take over my bucket list. I realized that I didn’t have to travel to another country to get away with my son. I started to think outside the box! Why can’t we travel by train or bus? I came back with endless possibilities. So far, we have been to North Carolina, Florida, Maine, Connecticut and Boston either by bus or train. It’s definitely a longer ride, but workable. There is plenty of planning ahead of time to make sure that everything goes smoothly and that there are plenty of resting opportunities. Hopefully, I’ll be feeling strong enough to continue to plan trips. I hope to eventually plan a cruise, which would be something completely new and amazing.
I’ll be sharing some traveling tips in future blogs in case you would like to be adventurous and take a train or bus ride.
I learned to take advantage of the little gains. I learned to appreciate those days where it seems like my health is stable and enjoy it to the fullest. I also learned not to plan too far in advance because I can never predict my flare ups.
Takeaways from my experience:
Don’t wait for “later” to do something you could possibly do now.
A chronic illness will lead to many unexpected testing procedures and each . procedure always has risks
Think outside the box! There is always a way to meet your family goals and dreams. We only have to adjust the path to get there.
Summer slipped right by us in a blink of an eye. Fall is here! It is time to enjoy a cup of apple cider, a bite of pumpkin pie and the great views of the Fall foliage. But let’s not forget Halloween. In my home, Halloween is the synonym to Fall. Halloween takes over and the countdown begins. My son always looks forward to the Halloween block party in our neighborhood, the fun costumes, and of course, the candy. Our best way to get into the momentum of this time of year is to do some home decorating and then start a countdown with fun, family-friendly, not-so-scary weekend movie nights.
Here is a list of some of the movies we have seen and love, as well as some new ones we are excited to see this Fall. Although these movies are family-friendly some might be scary for some children. You should read the movie plot before watching and leave it to your discretion, my son is 12 years old and enjoys mild suspense. Check out this list and share your favorite Halloween movie titles.
Halloween family-friendly movies
The Nightmare Before Christmas – Rated PG
Casper – Rated PG
Hocus Pocus – Rated PG
The Addams Family – PG13
It’s the Great Pumpkin, Charlie Brown – Rated G (we watch this one every year)
Scooby Doo – Rated PG
BeetleJuice – Rated PG
Monster Family – Rated PG
E.T the Extra-Terrestrial – Rated PG
Ghostbusters – Rated PG
Hotel Transylvania– Rated PG
Goosebumps – Rated PG
The Haunted Mansion – Rated PG
Paranorman– Rated PG
Monster House – Rated PG
Coco – Rated PG (this is my favorite to commemorate Dia de los Muertos)
Frankenweenie – Rated PG
Monster, Inc. – Rated G
James and the Giant Peach – Rated G
Maleficent – Rated PG
(Rated G: General audiences – All ages admitted. Rated PG: Parental guidance suggested – Some material may not be suitable for children. Rated PG-13: Parents strongly cautioned – Some material may be inappropriate for children under 13. Rated R: Restricted – Under 17 requires accompanying parent or adult guardian.)
Balancing work at that same time as I raised an energetic preschooler while living my everyday chronic illness’ ups and downs was definitely not an easy task. The everyday routine pushed me to move daily without slowing down. By the time I got home from work, my energy level was depleted. I have to say that I have been very lucky and fortunate to live with my parents whom have helped me throughout the years with Matthew. They helped me in everything you can imagine from food prep to teaching Matthew to ride a bicycle. But with all the help I have gotten from my family, my mother guilt was real and deep. I felt like an incompetent mother depriving him from “normal” childhood expierences and by not being around him on his adventures. My guilt grew daily as my son got older. There were more activities I was missing. My playground visits were always limited, I never ran around playing chase with him, couldn’t attend the weekend soccer practices in the Fall because Raynaud’s would kick in. For the same reason, ice skating was out of the picture or any fall/winter outdoor activities. In NYC, 9 out of the 12 months are either Fall or Winter so for the most part I always spend a lot of time at home.
It has always been my priority to give Matthew as much quality time as I can but some days it can be really hard. Looking back, I realized that there shouldn’t have been so much mom guilt. Now that Matthew is 12 years old, we look back together and I love when he remembers a time that was so much fun ( and I know that it was one of my sick days when I truly believed it was better to go to the playground if I could’ve).
For all the moms out there with little or older ones, I hope these suggestions are helpful.
Below are my TOP 3 go-to-activities I use till this day on my bad days. Without realizing it, these activities gave my son a leap in his academic journey. We have spent a significant amount of time on each one. I am sure you guys probably do them all too, but you might not think they are memorable moments because for many these are just a very common activity.
Read below to see how I upgraded these typical activities for a more fun and exciting time! For me whom my energy level fluctuates, my bed with Matthew by my side (oh…and tons of pillows on the bed) have been the perfect place to create memorable moments.
Books, Books and More Books
We have read tons of books together and we continue to read together. When he turned 4, he was identifying sight words as I read to him and by kindergarten he was already reading. Since then, we alternated our read alouds.
After reading, the best part has been
1) Discussing the book.
2) Come up with new endings to the story.
3) Add new characters
4) Draw pictures of what he thought the characters and scenes looked like (this is more for chapter books).
5) Act out scenes from the books
Matthew acting out a book scene from Paddington
These make fun conversations!
Although, audio books have been around for a long time, I just recently started using them. These are my saviors because I can save my voice (and energy) and listen with him. These would have been a great help on my sick days when he was younger.
We are now hooked on the Libby app (@overdrive_libs).
It’s a free app and all you need is a library card. They have a large selection of children’s audiobooks. Sometimes, the waitlist to borrow a book can be long but their library selection is pretty big. You can always find something.
There are other audio book services like Audible (@audible) and Scribd (@scribd) that require a subscription. I haven’t tried them yet but will check them out.
Movies
One of our favorite pastimes is watching movies. I do not believe in non-stop television for kids but understand sometimes it can happen. So I always try to make it meaningful when we watch movies. It doesn’t matter whether it is a good or bad one or if movie time is on my bed or at the movie theater. We just have a great time talking about the movie. For the most part, we watch them at home cuddled up. Of course, over the years the movie choices have changed to accommodate his comprehension and age.
Here are some ideas when selecting a movie/show:
1) One of our favorite things that we do is watch movies that have been adapted from books. We always read the book and then watch the movie. We compare and contrast the movie to the book.
2) Watch National Geographic episodes. Matthew loved to write fun facts every time after the show.
3) Our family is fluent in Spanish. I always tried to watch shows/movies in Spanish to improve his understanding. Sometimes, we even borrowed DVDs other in languages and it was so fun to try to guess what it was saying.
4) Educational videos are fun when they are preschoolers. We had all the Preschool Prep, Rock N’ Learn and BrainCandy DVDs. They were so much fun because they were short with catchy songs.
In recent years, I have been using Netflix (@netflix) and Prime Video (@primevideokids) as wells as purchased DVDs.
Something I am looking forward to this Fall is to Disney+ (@disneyplus), a disney streaming service. Debuting in November 2019, Marvel and Star Wars originals as well as the pixar and classic movies will be available for subscribers..
Music
We always have music on in our apartment. Music has always made us happy regardless of how I feel. Matthew grew up hearing children music everyday, all day. Now, that he has learned to play the violin, he has noticed that he has a great ear for music. I find that music can change your mood. Try turning on the radio and put some music on those “not so good” days. It takes you out of the lonely and sad place you are in while cheering your little one up!
I always underestimated these activities – reading, movie and music time. In the past, I scrolled down through social media and always saw pictures of families out and about and it made me uncomfortable to know I couldn’t do. Now, I understand that what my son always needs is quality time and I will do the family outings when I am ready and my body allows. I take one day at a time!
What are something you do with your kids? I’d love to hear!
We are only a few weeks away from NYC kids starting a new school year. It’s exciting to see my son re-energized and ready to use his brand new supplies that he picked out with great enthusiasm.
This is also the beginning of back to school (BTS) events: PTA meetings, curriculum night meetings, parent’s night out, sport’s team meetings and much more. I am lucky to have an athletic boy who is part of a swim team. So this also means it’s the start of swim practices after school, four times a week and weekend meets. It’s a tough time and it becomes overwhelming when my body doesn’t cooperate. After a relaxing summer, it becomes difficult to get back into the routine. This whole back-to-school process is not an easy task.
How do I handle such a hectic schedule when I don’t have the sufficient energy to tackle everything?
Over the years, I have learned that I was less productive when I tried to do everything. Even worse, I ended up in endless body discomfort and stress.
Here are a few personal tips that have helped me balance the schedule and somewhat enjoy the craziness of the back to school season.
1 – You don’t have to attend all the meetings and BTS events
Attend what you can. Keep in mind that you can always email the school staff, teachers and/or coaches to meet at a later day/ time that is more convenient. Most PTA meetings are recapped and sent through email. Communicating with PTA through email is also a great option. I do that a lot in the winter because stepping out in cold means finger ulcers.
2 – Get help from family and friends
I always wanted to be part of everything that involved Matthew – drop off, pick-up, sports games and everything in between. Over the years, it became harder and harder. It was not easy to let go of these responsibilities. I felt like an incompetent mother when I finally let go, but help from family and friends had been the key to being more productive in tough times. I save my energy to use when I am around my son. I found that I became more patient during homework time making evenings smoother (that’s a topic for a seperate blog 🙂 )
3- If possibleorganize your calendar to one errand a day
I never know how I will feel tomorrow. I can be full of energy today, but tomorrow I could have the terrifying finger ulcer pain shooting up to my arm. My good and bads are random and so I always try to have only one errand planned on the calendar. I try to mark all the classroom and school wide events as early as I get the dates. This way if I feel good, I’ll have all the energy to attend as it would be the only thing on the calendar.
