Limits

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Speed limits are there for a reason. They are put in place because tests have been done to see what is the “safe speed” for that road. It takes into consideration curves, hills, schools, etc. When we exceed those safe limits, we put everyone including ourselves in danger.

I know for some of you, this might come as a shocker but we all have individual limits. I apologize, I have to inform you  Peter, you are not The Hulk or Muscle Man. You cannot do everything. I am the worst about pushing my limits.

This weekend, after our senior dog passed away Friday afternoon, I decided that we were going to rip the carpet out of our house since it was just disgusting. I’m also one of those who stress cleans and organizes when they are upset. I found out that Friday morning one of my friends had passed away so it was just fuel to the fire.

While I gave it a valiant effort to help my husband rip the carpet out of our hallway and living room, I pushed myself a little further than I should have and as we were about halfway done, the train completely ran out of steam and I felt like I could barely hold myself up.

I usually am pretty good about knowing when ‘enough is enough’ but sometimes, especially when I am upset or in a particular state of mind where something is going to get done, I push myself.

Many of you know that I also have Fibromyalgia on top of Congenital Heart Defects, this plays a role in my limits as well. I woke up this morning in a huge flare and I had made myself physically sick and had to call out of work. Not one of my proudest moments. I slept until almost 11 am.

As members of the CHD community we need to realize our limits and understand that we are not Wonder Woman or Super Man. Some days we feel like we can take on the world and other days we barely get out of bed. If you are a parent of a CHD patient, you also need to realize your child’s limits and understand not to push them beyond those. If they say they are tired or need to rest, let them rest.

Something that concerns me is when parents (CHD parents and non CHD parents alike) have their children in sports and the child is physically sick from exhaustion, heat exahustion, etc. and they say they need to sit down and the Coach won’t let them. All you are doing is causing more harm. You are not benefiting your team in any way.

We all have limits, some are similiar and some are different. We all do things at a different pace.

Understand your boundaries and limits and recognize if you can no longer do as much as you use to. If your limits change, consult your Cardiologist to ensure it isn’t anything worrisome.

Do not let someone else push you beyond what  you feel you can do. You will only hurt yourself. Be your own advocate and clearly state when you need to stop or take a break. Advocate for your children as well and teach them to advocate for themselves. If necessary, get a note from a Doctor stating you or your child’s limitations.

I understand how important it is to want to be like everyone else but we aren’t like everyone else. There aren’t even two people with the same CHD that are identicial, we may have similar stories but we don’t have the same limitations because there are other parts that play a role in it.

 

Stay Strong & Creative,

Rebecca

Animals Heal the Heart

If you have been around me or associated with me for any length of time, you know I am an animal love through and through. If I could, I would save all the animals out of the shelters and rescues and keep them forever (except for the reptiles and arachnids- they are not welcome).

There is something about puppy breath or a kittens purr that just makes everything alright in the world. I have 3 cats (plus one stray that has adopted us), 3 chickens, and two dogs. Yes, I have a tiny farm or so it seems. Every night when I am sitting on the sofa after a long day of emotionally exhausting customers at work, my kitten will curl up into my lap in the tiniest ball and purr the night away. She has the loudest purr. When we lay down at night to go to bed, everyone (minus one dog and the chickens) join us.

Animals just have a certain way of making everything okay even when it really isn’t okay. I have found that my animals not only put me in a better mood most of the time but they also help with my anxiety and depression.

According to a blog put out in 2015 by Penn State, studies have shown that 60% of the American population own at least one pet. The American Heart Association published research in the journal Circulation that analyzed whether or not people with pets live longer. The study found associations between pet ownership and low blood pressure, heart rate, and cholesterol levels.

   

From personal experience, if I am upset snuggling with one of my animals will greatly improve my mood rather quickly. The best part about animals is they don’t talk back and they never let you down!

Whiskas has also put out their own information about cats helping people live longer. Per their article, having an animal can help you with keeping a routine as well as lowering stress levels. Having a dog will force you into a routine so they can get the exercise they need plus it opens up a whole new social avenue! Imagine all the people you can meet just taking your pet to the park or the pet store for a new toy!

Next time you are sad, go grab your cat and snuggle up and listen to her purr. It will do you some good. As I’m writing this, our kitten Little Bit is snuggled up in my lap enjoying the warm of the laptop. It’s her favorite place to be!

February is National Heart Month so I will be writing more about how to raise awareness and educating you with more facts about Congenital Heart Defects.

Stay Creative and Warrior On,

Rebecca

Drop some pics of your babies in the comments!

Snow Day!

Here in North Carolina, we have had a substantial amount of snowfall that we haven’t seen in years! It is pretty exciting to look out the window and see the snow steadily falling for hours. I am not one who likes to be cold or be out in the cold but I love watching the snow fall as long as I am warm and cozy doing so.

The chickens seemed to be confused by the white stuff falling from the sky and why said white stuff did not provide bountiful worms to appear from the ground like the clear stuff that falls from the sky typically does.

During our snow day, I was already scheduled to be off which was awesome and then they closed my husband’s work due to inclimate weather (which never happens). We  got to spend some time together which doesn’t typically happen during the week plus yesterday was his birthday so it was a double awesome! We played UNO and I painted while working on some decals. Here is one of the pictures I painted.

Here are a few decals I was working on for Congenital Heart Defects Awareness, I just opened my Etsy shop back up! I can do any decal you like.

I’ve been working on a lot of crafty things lately, I just always forget to share them in my blog, be sure to follow me on Instagram to see all the crafty things I’ve been up to lately.  I hope everyone stays safe and warm during the remaining snow days!

Be sure to show me your snow pictures!

Stay creative and warrior on,

Rebecca

 

Living with Edema

Edema is one of the main obvious symptoms I have aside from shortness of breath and it is a literal pain.

I do not remember struggling with it as much as a child as I do now as an adult. I do remember being on “fluid pills” for a small amount of time in elementary school but that was about it. Now that I am an adult it is something I battle everyday.

Most people have experienced edema when they injure a particular body part, go though pregnancy, etc. Edema is a medical term for swelling and retaining fluid. It is commonly referred to as “water weight”.

According to emedicinehealth, “Edema (or Oedema) is the abnormal accumulation of fluid in certain tissues within the body. The accumulation of fluid may be under the skin – usually in dependent areas such as the legs (peripheral edema, or ankle edema), or it may accumulate in the lungs (pulmonary edema).”

What a lot of people do not know or realize is that edema doesn’t just happen in the feet, ankles, and legs. I deal with it in my abdomen, face, and fingers. It makes it difficult for me to find pants that fit well because of the extra weight. I can take one of my fluid pills and lose 5-15lbs in the course of one or two days. Imagine how people look when they drop that kind of weight through diet and exercise, now imagine trying to buy clothes to accommodate the gains and losses of the fluid. It isn’t as easy as saying well today is a good day I can wear these pants. During the course of the day the swelling and fluid that wasn’t there that morning can show up and make it very difficult to be comfortable in the same “normal” pair of pants that fit that morning semi comfortably. One of the things that is very disheartening to deal with when you have swelling in your abdomen is that many people mistake the swelling for a baby bump, having congenital heart defects makes it a very real possibility that I may never have my own children no matter how great the desire is and when people ask how far along I am or if I am pregnant, the sting lasts for a while. It’s a very painful reminder.

The signs, symptoms, and causes are different depending on the kind of edema you suffer from.

From personal experience, if I am standing for long periods of time in one spot or sitting in my chair in my office or on my sofa with my legs dangling, my peripheral edema is worse than if I am up moving around and walking over any given distance. I have not found anything to prevent or reduce the swelling that accumulates in my abdomen.

Another kind of edema that is not frequently talked about that I have always dealt with is swelling in my face at night and in the morning. Normally, when I wake up in the morning my face is a little “fatter” than it is throughout the rest of the day. I’ve found it isn’t as bad if I sleep with at least two pillows under my head and neck to allow me to be somewhat propped up. As the day goes on, the swelling in my face tends to recede and it seems like it goes to other parts of my body to level out.

When struggling with edema it seems like a lot of Doctors do not take into consideration that you are retaining fluid when they talk about your weight. One of the reasons I went for a second opinion is that my first Cardiologist was solely focused on my weight and was convinced that my weight was the reason for all of my problems, I was 7lbs 14oz when I was born; weight isn’t the issue.

This particular Doctor wanted to put me on all sorts of diets (that I couldn’t adhere to due to food allergies) and send me to Cardiac Rehab solely to lose weight. A good portion of the weight he was upset about me carrying around was from edema.

Swelling in my hands and fingers is something that I struggle with almost every day as well, on the bright side- at least I do not have to worry about my wedding rings coming off. When your fingers swell, it is painful on the joints, much like when your knees and ankles are swollen from an injury. When my rings become tight from my fingers bloating up like over cooked sausages it is painful to try and get them off. I believe I am going to look into a different type of wedding band to try!

Many health and fitness sources say you should drink at least 8, 8 oz glasses of water a day or half your body weight in ounces a day. Doctors recommend that if you suffer from edema you should limit your fluid intake which makes things frustrating, it leaves you to question what you should actually do. I have yet to find two Doctors that have the same opinion on the matter.

Let me know how you deal with your edema!

Stay Creative and Battle On,

Rebecca

Why I Can’t Just Work It Off

At the top of many people’s New Year’s Resolutions is to lose weight, join a gym, work out x amount of times a week. For someone with Congenital Heart Defects, that just isn’t possible. One of the biggest hardships I face is the fact that weight just does not fall off of me, part of the reason is due to my edema.

Edema is a medical term for swelling or retaining fluid. In any given day, I can take my fluid pill and lose between five and seven pounds in fluid. It’s crazy to think about. Working out and doing your typical exercises isn’t as easy as it sounds simply because due to the different anatomy and construction of my heart and the numerous other complications that ensue from Congenital Heart Defects, I am limited in what I can and can’t do.  I would love to be able to lose weight but with edema, your weight fluctuates A LOT.

Breathing. Breathing is a very important part of life and when I am retaining fluid in my chest and abdomen, my lungs cannot expand the way they should and carrying around the extra “water weight” is exhausting. When my lungs cannot expand the way they should due to the lack of oxygen and decreased circulation, it makes me short of breath which leads to extra fatigue which in turn, makes it near impossible for me to do anything for any extended period of time.

When I am retaining fluid (which is almost every day) my “normal” size 16/18 jeans do not even button and I am forced to wear a size 24/26 just to accommodate the extra fluid. I tried Cardiac Rehab for a while three times a week, I never fully recovered after each session, or at least it felt that way. The hour of exercise even just walking, peddling, etc. made me feel like I had tried to run a marathon with 50 lb weights attached to me. I would come home and just crash.

With my particular defect and the complications I am currently having and my Pulmonary Valve leaking, my oxygen saturation’s are in the 80’s daily. Most “normal” people (including my husband who is a smoker) have oxygen saturation’s in the high 90’s.

My goal this year is to be more active and do things that I can do like using an exercise bike and swimming.

You have to be aware of your limits and be aware of how your body is responding. It’s fine to make goals but be sure that you know how to achieve them in a way that works for you. Make sure you make realistic goals. Don’t say that you are going to run a marathon if you know there is no way your body can handle it. It’s all about baby steps and working towards your goal and building your way up to where you need to be. Accept when you cannot do something, it isn’t about being like everyone else.

My hope is that once I have my next heart cath. done, I will be able to work out a little more, lose a little weight, and not be as exhausted.

Stay Creative and Battle On,

Rebecca

5 Resolutions People with Congenital Heart Defects Should Make

Happy New Year!

It’s almost 2018, 2017 has flown by with all of it’s ups and downs.

Good news! I finally got my next heart catherization scheduled so I’m ready for that to be done and over with, I’ve been impatiently (have you ever noticed impatient says I’m patient but you aren’t.. the irony!) waiting for it to be rescheduled since I wasn’t able to get my dental work done in time.

It’s time for all those New Year’s Resolutions that we all make that usually end up a distant memory by Valentine’s Day. Although we all have great intentions, let’s face it unless you have a lot of discipline most of the time it doesn’t work out.  Did you know that less than 10% of people actually keep their New Years Resolutions? How many of yours have you kept over the years?

I would like to share with you 5 resolutions people with Congenital Heart Defects should make for 2018!

5. PRACTICE SELF-CARE AND SELF-LOVE- Taking time for yourself to recover or rest is not selfish. It is something everyone needs. Do things to take care of yourself and make yourself happy.

4. GET THAT SECOND OPINION- Listen to your gut. If you are not confident in what your Doctor or Doctors are telling you, do not be afraid to reach out for a second or even third opinion. I did and it’s the best decision I have ever made.

3. EMBRACE YOUR ZIPPER FAMILY- Your Zipper Family are the only ones who truly 100% understand your daily struggles. They walk the same path you do each and every day. I admin a group for Women with CHD and it brings me more joy than you could imagine.

2. FOLLOW UP ON YOUR FOLLOW UP- Transitioning from Pediatric to Adult care is a tricky process, when my original Doctor left the practice I was being followed by, I lost my follow up. I fell by the wayside and went without medication I needed and without follow up that could have possibly prevented issues I have now or things could have been caught earlier. If an appointment is made for you, make sure to keep it and follow through!

1.  RESPECT YOUR BODY’S LIMITS- We all have limits and those of us with Congenital Heart Defects have more than others. Growing up I was never told my limits I was always told “you know your limits”. When I was younger I feel like I respected my limits more and listened to my body more. I think now that I’ve gotten older one of my biggest struggles is accepting my limits because first off I’m stubborn and secondly, as much as I try to encourage others with my condition I feel like my condition gets in the way too much so I do not like to be left out of things or feel different so I will push myself further than I should and put myself in bad situations. If you are tired, stop and rest do not push yourself you will only hurt yourself in the long run.

I resolve to be better with all of these!

What are your New Year’s Resolutions for 2018? Share them in the comments!

Stay Creative and Warrior On,

Rebecca

 

Update on life..

I apologize, it has been a while since I’ve updated.

As you can tell, I wasn’t able to have my surgery done in August due to not being able to have the dental work done in time, so I am still waiting. I had a follow-up appointment at Duke in September and he said that everything remained the same and he would still like to continue with the plan for surgery to repair the leaking valve.

I was finally able to get my dental work scheduled for 12/7 as unexcited as I may be. Note: If you have horrible anxiety, do not YouTube the procedure they are planning on you having; it will only make things worse.

In October, I started a new job working from home with a company that contracts with a lot of other companies. I currently do Chat and Phone Support for Toys R Us. I was hired seasonal but I really like it and hope I am kept after the season as this is something I can physically do although it is mentally exhausting some days. I have been working a lot of over time so I haven’t really had a chance to plan a post like I would like to. The one downside from a desk job is my feet and ankles seem to swell way more than they did. I’ve tried everything I can think of to help reduce it.

Here we are at the end of November, it has flown by! Thanksgiving wasn’t the best and my brother passed away a few days before Thanksgiving so I didn’t feel like I had a whole lot to be thankful for. We spent Thanksgiving with my in-laws and everyone brought a dish to share. I’m thankful that I do have my in-laws to lean on for support.

It seems as the weather gets colder and North Carolina can’t decide if it is going to be warm or cold, my breathing has started to struggle a bit. With having a leaking Pulmonary Valve, my lungs do not get the oxygenated blood they need making them work harder. Some days I am a lot more tired than others.

In other news, my chickens (well one of them) finally started laying eggs!

That is all I can think of right now, I hope in December I can be more active with my blog. Let me know if you guys have any questions or things you would like me to write about.

Battle on,

Rebecca

P.S. Christmas cards are awesome, let me know if you want to exchange them!

20 things a parent goes through, having a child with CHD

A dear friend who is a Heart Momma posted this on her Facebook the other day and it is 100% true. Desiree is the Mom of a precious little girl named Harper who was also born with Congenital Heart Defects, specifically Atrial Septum Defect and Ventricular Septum Defect. She has allowed me to share her list with you all.

A lot of this is relatable even if you are the one with CHD.

20 things a parent goes through, having a child with CHD :

1. Hearing the Dr say “There’s something wrong with your daughter’s heart.”
2. Hearing the Dr say “In order for your daughter to live, we have to do open heart surgery.”
3. Sitting in a hospital room with your child, having a machine breathe for them.
4. Making sure their wounds heal properly.
5. Watching your baby cry and reach for you in pain, and not being able to pick them up and comfort them.
6. Concern about every cough and sniffle.
7. Worries about everyone else’s coughs and sniffles.
8. Explaining to family and friends why you can’t be around as much during cold and flu season.
9. Having people make you feel like your worries are not valid.
10. Losing people in your life for either lack of understanding or lack of wanting to understand.
11. Crying of happiness over every single milestone because there was a chance she would never reach that milestone.
12. Crying of sadness because so many don’t understand why each milestone is so important, and what a miracle your baby truly is.
13. The feeling of loneliness.
14. The feeling of anger because “why MY baby?”
15. Trying to understand that it’s no one’s responsibility to educate themselves on your child’s condition, but hope that those closest to you will try.
16. That surgery IS NOT a cure.
17. Wondering about her future.
18. Thanking God everyday that you get to be her momma and daddy.
19. Questioning every decision you make when it comes to her.
20. Feeling blessed for witnessing a miracle everyday!

 -Harper’s momma and daddy-

 

Battle On,

Rebecca

It’s okay to not be okay.

REAL TALK. MOMENT OF TRUTH. 

We are human, we have our ups and we have our downs.

Not every day, every week, or every month is sunshine and roses- we have our seasons and our rough patches and guess what: THAT IS OK.

As humans, we are creatures of habit- it’s true. After working many years in retail, I find myself walking past people in stores and greeting them like I did when I was working and I usually say “Hey, how are you” without even realizing it or my response to someone asking me “how are you” would always be “good” or “I’m okay”. But I’ve realized something, it’s okay not to be okay.

 

Battle On,

Rebecca

Kindness Rocks

Facebook has been taken by storm by a new thing, kindness rocks! The rocks are painted and then “hidden”. You track your rocks using a hashtag, when you find rocks you take a picture of it and post it in your local Facebook group with the hashtag on the rock and then you can keep it or rehide it for someone else to find!

The premise of the rocks is to spread kindness and encouragement through pictures or sayings on the rocks and then get everyone who finds rocks to join in! There is a Facebook page for The Kindness Rocks Project as well as a Challenge being sponsored by Michaels. You can also find groups local to your area.

This week, my nephews and I had a ton of fun painting rocks that I had gotten from a local landscape design store. A lot of people go out “rock hunting” to find rocks to paint but since it is crazy hot in North Carolina right now, it is best that I just go buy some rocks. I picked out rocks that varied in size so we had a nice range to choose from.

Pinterest is my best friend, no seriously… I found SO MANY great ideas of what I could paint on my rocks, I picked two lighthouses, a owl, and a swingset. The boys on the other hand enjoyed thowing whatever paint they put on their brush and calling it a day. I promise they really enjoy panting they just don’t have much patience.

When I saw all these awesome rocks, I decided that I would use some of them to spread awareness for CHD, we are already lacking representation so why not make something fun and spread awareness while doing it? I’m in several CHD Facebook groups so I posted my idea in one of them and within 24 hours, I had created my group CHDAwareness Rocks and we had over 100 members. We are made up of Heart Warrior family memebers, friends, and spouses as well as Adult Heart Warriors. The best part is we represent just about the whole United States! Our hashtag for our rocks is #CHDRocks.

Once you have found your rocks, painted your rocks (and let them dry), you can either write on the back your hashtag and where to post or you can create labels on your computer and print them and adhere them with Mod Podge and use the Mod Podge to cover the rocks (don’t worry if it looks streaky, it dries clear) and then spray with gloss sealant. This will keep the rocks protected from the weather!

I hope you guys join in and share your rocks with me!

Stay creative and battle on!

Rebecca