A bit of an Update

It has been way too long since I’ve posted. I’ve been struggling with symptoms affecting both my mind and my body and I just haven’t had the brain power/energy to finish a post! My illness is a physical illness, but it stems from my brain and my autonomic nervous system so I have both neurological and physical symptoms, many of which are “invisible” to anyone who doesn’t know about them.

I’ve written before about how my Dysautonomia causes severe brain fog—this includes problems with word finding and sentence formation, short term memory loss, trouble focusing/short attention span, and a lot of day dreaming/zoning out. Right now my Dysautonomia is flaring because I had a virus and I’m not getting the full 2 liters of IV fluids I am supposed to get because of a back order that is in place due to the hurricanes that took out a major supplier in Puerto Rico.

Not only is this flare causing me to have extreme brain fog, but I’m having other symptoms as well such as falling asleep or losing consciousness while sitting or standing due to lack of blood flow to my brain. This is a common problem for those with NCS (one of the types of Dysautonomia that I have) but it is not only terribly annoying and embarrassing, it’s debilitating and limiting because I can’t drive or plan anything that involves standing or sitting for too long, and it’s hard to be around other people because I can fall asleep mid-sentence or even worse, in the middle of someone else’s sentence! Let’s just say I won’t be going on any first dates any time soon 😉

Because of my flare of Dysautonomia as well as an increase in severity of my migraines, I also struggle with overstimulation or hypersensitivity to sound, noise, touch, and smell. Overstimulation is something that a lot of people would think of in relation to autism or ADD in children, but it’s something I, as an adult, struggle with every day. Any loud or repetitive noises or bright, colorful, or flashing lights can send me into a terrible episode of overstimulation that leaves me in full body pain and spasms as well as with a migraine that doesn’t respond to medication. Some days my skin hurts to the touch like there’s a bruise spread across my whole body. Before my diagnosis my family thought I was just crazy and picky about noises, but now we know my brain really just can’t handle a lot of these noises, lights, etc.

Winter is always a challenge for me because I deal with intense pain flare ups due to the cold, lots of migraines, and my GI system always gets even worse than normal once I hit November/December, this year just seems to be throwing a few curve balls at me with the neurological symptoms being so significant on top of the normal flares.

Luckily I’ve learned how to adapt and work around most of these symptoms so I’ve still enjoyed getting ready for Christmas and our Christmas day was lovely and (relatively) peaceful. It’s so nice having my family home for an extended break—having company and my care team here makes things both easier and much more fun J

I hope to start being able to use my brain a little more so I can update on some more things and also share more about my Newbie Tubies Project and how I’m hoping to get that going by the New Year!

Thanks for reading, Happy Holidays!

My Holiday Inspiration

I was listening to a Christmas CD tonight while I was painting and I was struck by the lyrics of one song in particular. I don’t know what everyone else thinks or feels about this season (and really any time of the year), but I’m a strong believer in the power of love and this song just really hit home for me.

The song said, “The story of hope and joy and peace…. let anger and fear and hate disappear and let there be love that lasts through the year.” (Alan Jackson- Let it be Christmas)

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Christmas Paintings!

Maybe it’s just because I’m exhausted and emotional from post surgical pain, medications/side effects, and insomnia, but this just made me stop what I was doing and really ponder and appreciate. Christmas is my favorite time of the year, but it’s not always a picture perfect holiday. We’ve dealt with years of illness, our fair share of (extended) family drama and arguments, tears on Christmas Eve, and anything else a “normal” family (hah, normal?) may see. However, in the end, we come together and we celebrate love and we spend time together and that’s what matters.

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The day after hearing that song, my good friend posted this amazing post on Facebook about love and family and again I was just struck with how much I related to that post and how again the power of love was shining through and someone else was recognizing and sharing that. I’d like to share that post with you…

” People always ask me how I stay so strong and how I’m so positive. Well, I’m not always strong and sometimes I feel like nothing will ever be okay, but I’ll let you in on a little secret. I was born into a family of warriors. After each punch life throws at us, we help each other up and we battle it together. No one fights alone and every one of us has scars of courage to prove it. At the end of the day, our love outshines any cloud of darkness. Together we can do anything through love.”
-Carolanne Monteleone

My family and I (parents and sisters) have been through hell and back just trying to stay on our feet through each “punch”, each trial we’ve been through, but the key to that is that WE go through each trial. Together. I am never alone through this long and challenging journey I am on because I know my family will never leave my side. Sadly, I am one of the lucky ones; I’ve seen first hand that not everyone, not even every family member, works that way.

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Decorated IV pole

Love is one of the most powerful emotions a person can experience. It can make you do crazy things, but it also brings about the best things in life. To love unconditionally and to be loved unconditionally is one of the best gifts you could ask for, and you rarely find that outside of your family (until you get really lucky 🙂 ).

Families should always share unconditional love– parents, spouses, siblings, grandparents, cousins, everyone included! Life is short. Life is full of ups and downs, arguments, differing opinions, heart break, annoyances, cold shoulders, and regrettable moments, but it’s also full of laughter, hugs, big smiles, great photographable moments, tons of joy, milestone moments, and most importantly… LOVE. So why do we waste so much time being angry? Holding grudges? Arguing over the past? We should be together celebrating, making memories, being joyful, sharing happiness and love.

This Christmas season I urge you to love unconditionally. Find forgiveness in your heart for those who have wronged you. Don’t ever take being treated for less than you deserve, but always remember that life is short and relationships with loved ones are precious. Let only positive thoughts into your mind and share those positive thoughts with others; always try to focus on the good, there is so much of it.

Spread love. Laugh endlessly. Find your happy and share it with your loved ones.

Happy Holidays!

The Significance of the Holiday Spirit; Spreading Love and Generosity

The holidays are my favorite time of the year. Once we pass Halloween and get close to Thanksgiving I know it’s (basically) an acceptable time to bring out all of my Christmas leggings, shirts, tubie pads, and of course the hippo who sings Christmas carols.

It’s kind of funny that this is my favorite time of the year since health wise it’s often the most challenging. I was diagnosed with gastroparesis in December of 2013; this will be my 5th year not eating a Thanksgiving meal, my 5th year without any pie or turkey, my 5th year not having any snacks or candy in my stocking, my 5th year not eating our traditional Christmas brunch, and my 5th year seriously struggling with my health during the holidays.

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Our favorite gifts… donut pillows and blankies 🙂

But really, these holidays don’t have to revolve around food. I have much more to be thankful for even without eating. I have so much beauty and love in my life and I’ve found new passions and hobbies that not only bring me joy but help distract me from pain, hunger, and other symptoms as well as from the thoughts of all that my illnesses have taken or changed in my life; I prefer to focus on all that I’ve gained, all of the positive changes, and all of the things I’ve learned about myself and about life just from becoming so sick and being homebound.

The Christmas spirit is such a beautiful thing. I’m not even sure I loved it so much before being sick, but now I appreciate it endlessly. Even for people who don’t really like Christmas or don’t celebrate it, there’s just a contagious feeling of joy, love, generosity, and comradery that we lack during the rest of the year.

As I’ve gotten older it’s become less about gifts and food (obviously #tubiereality) and more about sharing that joy and love with others as well as finding joy in giving.

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Baxter stayed up for Santa 😉

I love finding special gifts for my loved ones but also finding ways to share with the less fortunate; sometimes this means giving money or gifts, sometimes meals or just festive cookies, or othertimes it is giving other gifts that I can make like simple cards with meaningful words, a painting, or a simple necklace or bracelet that I have made. In the past we have given gifts and food to local families or children who were in need, sent boxes of gifts to children in different areas or countries, and this year I’ve started a new nonprofit called “Newbie Tubies” for other individuals who are getting feeding tubes for the first time! I’m setting up both an online wish list and will eventually be asking for monetary donations for extra supplies and shipping, but I’m also selling my paintings in hopes to raise money to send out these packages to help ease the transition for new tubies.

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Breaking out the festive tubie pads 🙂

The holidays are a beautiful and special time. It’s filled with love and joy, gatherings with friends and family, and the gift of giving. If you’re able to give, I suggest finding a way to give to someone who is in need, whether that be an individual person or a family who could use some Christmas cheer, volunteering at the food bank or soup kitchen, or donating to an organization of your choice that is donating to those in need; ‘tis the season of giving and spreading the holiday spirit. <3

Lots of love and an early wish of happy holidays! 🙂

Father’s Day

People always say that everyone knows each other in a small town; well I grew up in a small town where my dad was the principal at the local elementary school, so in my experience, that statement in pretty accurate. For as long as I can remember I’ve had strangers coming up to me in stores, schools, restaurants, and on the sidewalks just to tell me how amazing my dad is or reminiscing about their times with him.

My dad isn’t just known around town though, he is known throughout the county as the best administrator and an all around great guy. When he left one elementary school and moved to the next, teachers from the first applied for jobs at the new school to try to stay with him. When he left the last school and started working in Central Office, teachers and parents were devastated; it’s been a year and I still have people telling me how much they miss him and all he did for that school.

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Dad did a fundraiser and got taped to a wall! Did I mention he has a great sense of humor? 🙂

My dad is known to be incredibly smart and empathetic; his co-workers used to tell me all the time that they loved him so much because he cared about everyone. He will always listen and he will always do his best to help someone if he can; he’s about doing what’s right and what’s going to help people. He always wanted to help the children, the parents, and the teachers and their families. I could tell so many stories, but watching him work and do all he did for his students made me so proud to be his daughter.

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One of our favorite places! And of course, laura photo bombs!

 

Dad loves his job, and he has always been incredibly passionate about it, but if there’s one thing he is even better at, it’s being a dad. (sappy, right?) Dad was blessed with three daughters—we like to joke about how surrounded he is with females all the time 🙂 If you have daughters, you know we can be a… challenge. We can be stubborn, have attitudes, have boy problems, give killer silent treatments, hold grudges, be a little emotional, and pout like crazy. But we also love hard, show gratitude, laugh a lot, give great hugs, aren’t afraid to express emotion, love family time, and so much more. I think my dad would tell you we are worth the hard work.

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I’ve looked up to my dad for as long as I can remember. He used to tuck me into bed and say my prayers with me every night. We had “special time” with Dad when we were little where he would take us girls out without mom and we would get pretzels at the mall or see a movie and he would buy us presents. I was SO excited when I found out he would be my principal in 3rd grade, even though it meant we had to move to a new town. We shared a love for oreo ice cream. He took me to all of my swim practices and out of town meets. My dad taught me how to drive, I went to the same college he did (hopefully I’ll go back!). Now he drives me to the doctor all the time, spends countless hours talking to doctors, nurses, insurance agents, and pharmacists on the phone, and is by my side no matter what.

Life is unpredictable and it’s thrown a ton of curve balls at us, but my dad is always around to help figure it out.

I love you Dad, Happy Father’s Day!

A “Non-Hallmark” Christmas

Let me start by saying that I love Christmas. I’m one of those people who is ready to start baking Christmas cookies and watching Christmas movies right after Thanksgiving (much to the dismay of my sisters 😉 ). The whole season just seems so… jolly! I love seeing people light up with holiday spirit; it just seems to bring out the best in people.

This holiday season I feel incredibly blessed in so many ways. We recently moved into a beautiful new home on an amazing piece of property. Although I sometimes miss our old house, I love living in the woods and our new home is so accommodating to my needs with my illnesses as well as the needs of my family.

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The new house!

I’m also so thankful for my family who continues to be by my side through my toughest times. I could (and probably will) write a whole blog post about how amazing my family is, but for now I’ll just say that I literally wouldn’t be here today without them.

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My family (minus one!) in NYC last Christmas! That trip just about did me in, but it was so fun!

I’m thankful for all sources of warmth—my home, my bed, my heating pads, my hats and coats, and all my fuzzy blankets. Of course I’m thankful for my dog, Baxter who keeps me company every day and brings so much joy to my life! And I am thankful to have good health insurance and a great set of doctors working with me to find a good treatment plan as my health continues to be a challenge. The list goes on, but the general idea is that I’m overwhelmed with gratitude during this holiday season.

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Little man in his Christmas sweater 🙂

That said, even though I love Christmas and I feel blessed to have so much to be thankful for this holiday season, over the years I have also come to understand that not everyone has a perfect “Hallmark Christmas.” Many of us are plagued by illness, loss of a loved one, poverty, family discord, and other things that may affect our holidays.

This will be my 4th Christmas living with severe chronic illnesses. My illnesses never keep me from having a joyful Christmas, but they do affect how I get to celebrate. My day won’t consist of eating Christmas brunch or Christmas dinner with my family, there won’t be any sweet treats in my stocking, and I won’t be running around outside or wrestling with my cousins like I used to do or sitting and sipping wine with my aunts and grandma.

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My delicious (not) Christmas dinner! At least my pole is festive 🙂

This time of year is actually when my illnesses tend to be at their worst. My pain levels are high, my nausea is relentless and completely overtakes me at times, I have daily migraines, and many days I’m asleep more than I’m awake. I’m incredibly thankful that this year I have the means to stay at home and out of the hospital for the holidays by relying on my feeding tube and my port (a central line in my chest that acts as a long term IV) to stay hydrated and get in enough nutrients to ride this flare through.

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Pretty much me right now.

My Christmas Day will include IV saline, tube feeds, nausea and pain medication, and napping in place of breakfast casseroles, eggnog, cookies, and snowball fights, but that doesn’t mean I won’t love it. My family helps make Christmas special for me every year; it may not be ideal, and it may not include any Christmas miracles, but I have so much I am thankful for and I will have so much to enjoy on Christmas day.

 

Not everyone has a perfect “Hallmark Christmas,” but that’s okay. Celebrate as much or as little as you are able. Celebrate in what ways make you happy. Take care of yourself this holiday season and help others do the same.

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Having these illnesses has really widened my perspective. It is important to keep in mind that not everyone has a perfect holiday as we go about celebrating this season. The holidays are a time of joy, love, generosity, and gratitude and it is so important that we keep that in mind as we share this time with our loved ones as well as with those we may not know as well. Not everyone is full of holiday cheer, and that isn’t a crime. I encourage you to always give people the benefit of the doubt and simply spread love this holiday season.

 

 

 

First Post– Holiday Spirit

Hey guys! So, for my first blog post I didn’t want to start out with anything too heavy, but with Thanksgiving only a week away, I thought why not write a bit about what the holidays are like for someone living with chronic illness!

This will be my 4th year of holidays majorly affected by Gastroparesis. In fact, my Gastroparesis started in November of 2013, right before Thanksgiving. Little did I know, three years later I still wouldn’t be able to eat a Thanksgiving meal!

Although I really miss all of the delicious foods that I loved eating throughout the holidays and sometimes this time of the year can be stressful; for the most part, I still really enjoy the holiday season. I love to cook and bake for others and occasionally I can make something that I can have a bite of, too. I also just love the holiday spirit that seems to brighten everyone’s mood during this time of the year.

My health has really taken a hit this year, and I’m not able to do a lot of the things I love to do like volunteer, babysit, go to school, and regularly spend time with people outside of my home. However, I do intend to make the most of the holidays in every way I can!

Here are just a few of the things I love about the holidays:

  1. Picking out and decorating the Christmas tree
  2. Baking Christmas cookies of all sorts
  3. Snow—even though I barely leave the house when it’s so cold!
  4. Christmas movies
  5. The gift of giving— whether it’s Christmas shopping, giving away Christmas cookies, or donating to the less fortunate, I always find that the holidays are full of generosity and I love to participate in the giving 🙂

This holiday season I will be taking each moment to enjoy life’s small gifts. I encourage you to appreciate everything you might normally take for granted—a functioning GI tract, the roof over your head, a mother who cooks for you, and just being here to celebrate another holiday season.