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CHD Awareness

The older you get, the harder it stings.

August 21, 2017

 

We are getting near the end of wedding season. Weekend after weekend, you see your family, friends, or people you just met marry their special someone and enter the beautiful sacrament of marriage.

I’m not going to lie, it’s hard to watch sometimes. Of course, you are beyond thrilled and truly happy for the couple entering marriage, but it does sting a little bit when all you want is the same thing.

People with chronic illness face a different type of sting. One that brings many different levels of pain. Finding someone to not only love and protect you, but willing to take on a role they would know ahead of time is down right petrifying.

Before officially getting diagnosed at 23, dating actually seemed more approachable and less intimidating(even though dating is always hard). I never had to worry about when and how I should share my realty of living with CHD. Being a single 28 year old congenital heart defect survivor, I’m learning everyday how to do this(if there is even a right way).

I remember in high school and college, having no idea about my condition or what my future would consist of, and worrying about the tiniest things when it came to dating. Like we all do! Had I know what was coming in my life, I wouldn’t have worried or obsessed so much. I’ll admit, I miss the times when dating(although didn’t see it that way at the time) was simple. When my biggest fear was if I had the perfect hair and makeup look. Now, my biggest fear is what if he doesn’t want to deal with someone who has an invisible chronic disease? It’s a real fear and I know I’m not the only one who struggles with it.

I think now, more than ever, it is so important to surround yourselves with a community that has walked in your shoes. Everyone can be happy for someone else’s happiness. I believe that because there is so much good in this world. However, being human, the craving to love and be loved stings a little deeper as you get older when you have a chronic illness. And the fear of someone not wanting you because of your illness and everything that surrounds it, becomes more and more real as time goes on.

Sharing the realities and hardships of getting through life events with people that have been in your shoes, helps more than you might know. If you are struggling with dating as a CHDer or just simple life events that make it more challenging than what most people have to do, know that you are not alone! First and foremost, turn to faith. If you give up hope, then you’ve given up on pursuing the desires of your heart.

 

My favorite planner to use!

August 1, 2017

If you’ve been following my blog for a while, you might know that I am a planner addict. I love writing and organizing my days in a pretty planner, but lately it has become a necessity in more ways than one.

Y’all, no one tells you how open heart surgery can mess up your memory. I used to be the queen of remembering dates(birthdays, anniversaries, etc) until my surgeries. Just ask my family.

Every since hearing those words, heart defect and open heart surgery, my memory has gone down hill. Between the trauma of surgery, recovering and adjusting to life a CHDer(not to mention the anesthesia and medications), it actually makes sense why I can’t remember things the way I used too.

Now more than ever, I count on my planner for getting through life. If you saw my last post, I use certain iPhone apps to help make my life with a chronic illness much more manageable. The same goes for my planner.  And I find they work hand-in-hand quite well.

This is my 3rd year using the simplified planner by Emily Ley. All of her planners are so beautiful and brightly colored. Who wouldn’t want something fancy to get through the craziness of life? I’ve always purchased the academic planner since I’m still in school and will most likely continue once I’ll be teaching full time.

 Using the simplified planner has been a game changer for me when it came to try and juggle all the things in life, but mostly dealing with my CHD.

Life itself can be hectic, but having a chronic disease on top of it all makes it even more challenging. If I do not write things down that are necessary for me to do or take(daily water intake reminders or remembering to eat lunch), I could easily put my health in jeopardy. And with already having memory issues and so much on my plate this coming school year, I’m going to depend on my planner every hour of the day.

Now, how do I use both my planner and iPhone apps together? Quite simple actually. Every Sunday, I’ll sit with my phone and simplified planner to start mapping out the week ahead. A lot of confirmation numbers for sub teaching assignments, health appointments, and more go straight to my phone after making them. I’ll simply pull all of that information including birthdays, anniversaries, meal plans, etc from my iCal app and write it down onto that week in my simplified planner.  Having this information written down and on my phone set as reminders helps me to never forget a birthday or an important appointment.

What some people do not realize is when you have a congenital heart defect, you may not just have a heart problem, but could develop other issues. Keeping up with Cardiologists, Rheumatologists, Chiropractors or Physical Therapy(maybe the nail salon too?) can make your mind go bananas at times. That’s why I have to rely on my planner and certain iPhone apps. It seriously helps me from losing my mind while in a season of being extremely busy with a chronic illness.

My absolute favorite thing about the simplified planner is that it truly lets me carve out time for myself and for those most important to me. Whether it’s to make daily workout routines or visit my nieces and nephew. This planner is not just another planner to keep organized, but rather helps prioritize what is truly important in life. Plus, there is a section where you can write down one thing you were grateful for that week. That alone makes for a successful week and a grateful heart.

Cheers to starting a new academic year!

 

Top 5 must have apps for people with a chronic illness!

July 19, 2017

As a congenital heart defect and two time open heart surgery survivor, my life is full of doctor’s appointments, medications, grad school and working full time.

To be honest, there are days where I’m barely keeping my head above water. Some days, I’ve to retrace my tracks to see if I already took my meds for that day. Scary, right? But, life happens and when you have a lifelong disease, you try so hard to not let it define or control life.

Over the least year, I had to find ways to not let my heart defect control my life. Although, my life has not turned out the way I’d hoped or expected, I’m still in the prime of my life working towards goals and wanting to settle down soon with my own family in the future. Hopefully, not too far into the future 🙂

Since I desire all these things in my life, my health comes first so that I can continue living my life in the best way possible.

Here are my top 5 apps that help me every day to achieve my wants and desires while living with a chronic illness.

1. iCalendar -This is a must for patients who have multiple doctors appointment here and there along with their normal day to day schedules. I love how you can color code certain events or appointments. The best part is you can set a certain time to have reminders set in as much time in advance as you need it. This was a game changer for me, because it made me less stressed out if I forgot to look how far away the appointment was or allows me to gather any necessary forms the night before. Who wants to stress out their heart more? Um, no thank you!

2. Round – Having an app used only to remind you take your medications every day is a life saver. Set a time you want (or need) to take your medications and will it ding at that time. You simply press the check sign after you take your meds and it will record that you did press check. You can also look back to previous days to see if you took your meds or not. Thus is great for any upcoming tests or procedures that needs to be shared with your healthcare team.  This is app is truly amazing for people like me who (truthfully) from time to time forget to take their meds or sometimes can’t remember if they already took them.

3. Fitbit – Everyone should have a Fitbit! But, for real though. Since, I have a heart defect, this was a no brainer to get. You can read all about why and how I use my Fitbit everyday here.

4. Scanner for me– I think this is actually one of my all time favorite apps ever. A scanner right from your phone. Yes, that’s right! I use this for so many things, but love using it to scan all my doctors appointments paperwork. If you go to specific specialists, you might get a ton of after appointment paperwork like me. I hate clutter on my desk, but know that this information about my health is important so I can’t just throw these papers the trash. On the way home(if I’m not the one driving) or when I get home from my appointment, I will scan all the documents I just received from that day. Then, I’ll email myself the scanned documents from my phone and put into a specific health file on my computer. All my health files are dated and categorized by specialists. This way, if you need to refer back to one for something health related or even insurance related, it’s all there! No more piling of papers on your desk or in a corner anymore! It’s that simple!

5. Life360– This is a great app that helps to know where you are at all times. You are connected to a family member, your husband, etc on this specific app. For example, I am not married yet, so I rely on my mom to be my emergency contact for anything and everything. Including this app. Not only can she see where my location is, but I can see hers. It’s definitely comforting knowing I can look at the app and see she isn’t far if I’m home alone recovering from some procedure or surgery. This is definitely a safety precaution that I choose to have and has brought so much peace knowing a family member will know where I am if an emergency should happen.

I highly recommend all these apps as they have been life savers in a season of life where  it’s none stop go for me, but can’t afford to put my health at risk.

I hope you find these apps just as useful as I have found!

 

Top 5 grad school tips when you have a chronic illness

July 11, 2017

If you are currently in graduate school or have finished that part of your life, you might have an idea that it is no joke.

I think the part that makes it so hard is not only being a full time student, but also working full time. For people with a chronic illness, Grad school is about 10 times more challenging. Open Heart Surgery is such a grueling surgery that can affect you for the rest of your life. There are days where you might feel great, but then have days where you can’t remember some things or your body is not cooperating when you need it too. But, that’s life for someone with CHD(congenital heart defect).

Today, I’m sharing the tips I’ve learned and used over my last year of being a full time grad student and substitute teacher with a congenital heart defect.

Here are my top 5 grad school tips:

  1. Do not pull all nighters. The last thing we need is to lose more sleep. Try and make a sleep schedule. Put all electronics away and get to bed at a descent time. Losing sleep only puts more strain on our bodies which for anyone with a chronic illness is a big no no.
  2. Try to get ahead on assignments as much as you can. That way, if a bad health day comes up, you can rest your body instead of making it worse while stressing to get assignments finished.
  3. Have a water bottle and snacks on hand. While taking specific medications, it’s so important to always carry a water bottle and snacks for night class or study sessions. Sometimes, if you’re rushing to class from a long day of work and need to take your meds, you will at least have a snack to hold you over till a good meal. Who wants to take their meds on an empty stomach? Um, no thank you.
  4. Invest in a Laptop foldable and adjustable standing desk .  I love this one from Amazon. This was a no brainer for me as I’ve struggled with back, neck and shoulder issues post surgery. Last thing I wanted to do was cause more problems.
  5. Make time for some FUN! We have been through so much between open heart surgeries, recoveries and simply tough situations. So, while you may need or want to attain that master’s degree, don’t forget to have fun and spend time with your loved ones. We know too well how life can take a drastic turn and could all be gone tomorrow.

For me, these tips have been life saving both physically and mentally. If you have a chronic illness while trying to pursue concrete goals in life, keep going, but don’t forget to take care of yourself. I’m here cheering you on fellow grad students and chronic illness survivors.

 

 

A recent purchase I can’t live without!

July 6, 2017

If you are a CHDer or even someone who has had grueling surgeries in their life, you might know oh too well how your whole body is effected, not just the part being repaired or fixed.

I won’t get into the details of open heart surgery, but let’s just say between your chest being cracked open, pulled back for hours, put back together and then recovering from it all in a bed or chair can be a big burden on your back and neck. The thoracic area especially, can be a real killer(thank god for muscle relievers).  The idea of getting up and walking around to avoid stiff muscles, get everything moving makes perfect sense, but doesn’t always go the way everyone envisions it.

For me, I get extremely sick after open heart surgery. To the point, where I can see how people are in such pain just want to die and suffer no more. Thankfully, you just get through it. But, as the weeks go on, you are in survival mode. Trying to find a comfortable and pain free position is rough. Sleeping is even worse. Eventually, this does take a toll on other parts of your body. For me, it was and still is my back and neck.

Over the years, I’ve learned a few tricks here and there, but one thing I recently found to be so helpful was having an adjustable laptop standing desk. I’m not talking about the big ones you might see on TV, but a rather smaller and more convenient one that fits perfectly on your desk or wherever you find yourself working away on your laptop. Being a grad student, I am almost always on my computer doing research, writing papers or lesson planning and if I don’t take care of my back and neck, I will pay for it in more ways than one.

 

Seeing a Chiropractor and a Physical Therapist for a couple of years was so helpful, but unfortunately can be costly. Taking proactive steps to prevent any more pain and prepare for future testing, procedures or surgeries while on a budget can be done. I don’t want my life full of constant typing on my laptop between grad classes and blogging to put anymore strain on my back and neck. I decided to purchase a Readaeer adjustable foldable laptop stand desk table.  It allows me to look straight ahead at my laptop, rather than look down at my screen or look even farther down to type. It took me years to realize that a simple position change can hinder the course of pain for both the present and the future. By far, this was a wonderful purchase for all the things I have to get done in my daily life without having my back and neck pay for it.

If you are someone who depends on their computer almost every part of the day and struggle with back and neck pain from your open heart surgery, I encourage you to purchase one for yourself. You deserve to be free of muscle aches and pain after being through so much already from surgery.

 

My struggle with FOMO is a real thing!

June 21, 2017

FOMO(fear of missing out). I think it’s a real feeling and an even bigger one for people with a congenital heart defect.

As I’m not too far away from closing out my twenties, I haven’t gotten the chance to have my own apartment, be settled in my career, or even really have a social life(yes, that means dating). The last 5 years, I have gone through two open heart surgeries, 4 months of recovery, endless doctors appointments(not even just for cardiac related), multiple physical therapy sessions, few jobs here and there, graduate classes, and many many many times where I have had to say no to events due to my health.

Yes, I struggle with FOMO. Big. Time.

A month after graduating from college, my defect was discovered through a murmur and needed to be addressed rather quickly. So, the years that seem to be what some people call “independent” were for me the exact opposite. Rightfully so, came the fear of missing out on being a young adult and the independence, adventure and opportunity that comes with it.

At the age of almost 29, I honestly thought my life would be so different. I truly thought I would have been married and pregnant with my third child by now, but life throws us many curve balls. One of those curve balls is a pricey one too. Having a congenital heart defect has been draining on my financies as well. In fact, one of the main reasons being independent has been such a struggle is due to ongoing medical bills.

Since my diagnosis, I have judged myself over the fact that I still live with my parents and depend on them for almost everything. To be honest, I was so afraid of not being taken seriously or even worse, being viewed as lazy. I was embarrassed and angry all the time. Turns out, I needed to judge myself and feel the need to miss out. It was in those times, I found the grace to to keeping living with a new purpose and desire, rather than embarrassment or anger.

Although, I most likely will always struggle with fear of missing out, I feel abundantly blessed and thankful how my life is actually turning out. I get to spend more time with my parents and siblings still living at home. While, some days are easier than others, I can choose to look at it two ways. One way will give me a bitter attitude and one will give me the grace and gratitude to keep moving forward. I’ve been choosing the latter of the two and have seen the graces pour out.

But, FOMO can be a real thing when it comes a life long condition. Stop judging yourself  for something you have no control over. I wish someone told me me that years ago. It’s so true how we can be so quick to judge ourselves, but in the end, it doesn’t matter.

I want to end this post with an encouraging quote. I have heard this quote multiple times over my lifetime, but it wasn’t until a recent situation that this quote prevented major depression from happening. For that, I am truly thankful.

“Accept the things you cannot change, the courage to change the things you can, and the wisdom to know the difference”.

 

One item I won’t leave my house with and no it’s not my phone!

June 19, 2017

Do you have a Fitbit?

If not, you must get one!!! I was SO hesitate in getting one for a long time. I didn’t think it would help me, but it actually has done more good for my life than I thought.

First things first, it has the time! As busy grad student, full time substitute teacher and a couple of small jobs on the side, having a watch built in is amazing. Another major asset is how it monitors your heart rate. To be honest, I didn’t think it was going to be accurate, but I was wrong. And as a congenital  heart patient, I wanted something that would help me monitor my heart rate not only when working out, but in everyday life.

One of my favorite things about the Fitbit is how many steps it tells you have walked that day. A real motivator for someone who needs that type of motivation.

And let’s be real….the best thing of all about the Fitbit is the ability to change band colors. I mean seriously, who doesn’t want a color change every so often?

I finally gave in and bought one and am totally in love with it.

If you are thinking of getting one, go for it. I don’t regret it one bit.  Remember, they come in so many different band colors. I went with the Fitbit Charge 2 in purple. I have had my eye on the hot pink band and of course can’t wait for some darker color bands for the season of Fall. Most of all, I love how I get everything I need on one item.

If anyone wants to start a daily step challenge, I’m all in. I have 5 brothers, so competition is in my blood. 🙂

When you are sick, but not sick enough.

June 8, 2017

If I hear the words, “you are basically stuck in the middle” one more time, I’m going to have a breakdown.

Being told you are sick, but not sick enough is the WORST thing ever. Hands down, the worst!  Imagine being told you are only going to be given half the amount of energy you normally have everyday, but still have to “adult” in the same way. It’s exhausting. Physically, mentally and emotionally. And this is everyday. How do people expect you to keep up with the demands of a normal person while NOT having a normal working heart?

To be honest, having gone through many many blood draws, procedures and surgeries, the part of being sick, but not sick enough is the worst when it comes to having a congenital heart defect.

All we want is answers and a plan, but sometimes thats not always easy to find. It’s not our doctors or surgeons fault. It’s the physiology of our hearts that make it complicated to figure out.

Being stuck in the middle is physically, mentally, emotionally and financially draining, but I still have to adult and take charge of my responsibilities and keep pursuing my goals in life.

I am going to keep pushing through while being “in the middle” and hoping over time, questions and concerns will be answered.

Until then, what are some ways you cope with being sick, but not sick enough?

I’d love to hear some ways to keep going throughout the day, but not exhaust myself out to where I can’t function anymore.

Know, I am praying and struggling right beside you CHDers!

I’ve got goals and my heart defects won’t stop me from getting them done!

April 30, 2017

We all have goals right?

Ever hear of that famous 5 year plan everyone talks about? I am a planner and boy have these last 5 years of my life kicked my planner mode to the curb. With only having gone a month into adulthood, my plans post college literally went out the window. The words heart defect and open heart surgery derailed what I wanted in life big time. Fast forward another 2 years, the same derailment happened again. Only this time the goal and plans I had before slowly faded away even more.

My type of defect and open heart surgeries are no walk in the park.  In fact my surgeries have made it more challenging in some ways than what most people think after someone has surgery to “fix” something.

First off, we are never fixed. There is no cure for this disease and open heart surgery doesn’t give you a completely new heart for the rest of your life. Thankfully, we have amazing surgeons, doctors, and nurses who do the best they can to help manage our care and give us opportunities in life. Many of us have faced and will still face more surgeries in our future. It stinks, but I’ve learned throughout these past few years that planning goals have become even more important now then ever before. It’s funny how life works out that way.

To be honest, the last few months for me have been extremely challenging both physically and mentally. Trying to make ends meet, going to grad school, figuring out what the heck God wants me to do with my life, and just so much more that made it really hard to want get up everyday and keep going. And I think the hardest part about these last few years post diagnosis, is knowing that it’s never going to go away. More surgeries will be in my future(unless by some miracle Wilbur decided to keep going for the rest of my life). With that, “planning” goals and dreams can either break you or make life worth living even with a chronic illness.

I’ve concluded that I must keep planning, making goals and doing the best I can to achieve them. Knowing what the unknowns could be can be detrimental to the way you view what you want out of your life. And being in the category of knowing what the unknowns could be, has definitely allowed me to not want to plan for anything in life. I want to change that. I want to stop thinking I can’t make goals and do the best I can in every season of my life regardless of delays and possibily more challenges ahead.

This is when is I stumbled across the PowerSheets. I knew wanted something small, but intentional. Cultivate What Matters has beautiful, not too overwhelming, but purposeful goal setting sheets. A few months ago, I decided to not can’t let my defects, these surgeries(that has brought on more physical pain) and knowing what the future might be not take away my goals and desires in life. These PowerSheets are an amazing tool to help me complete small and big goals I have in my heart.

I purchased the 6 month stack so I’ll be starting my sheets May 1! Which is tomorrow!!! How crazy is that?! It usually starts in June, but I figured December is so busy because of the holidays and I really can’t wait to dive right in and see where these power sheets take me. I am ready to start living out my goals and dreams regardless of what tomorrow brings.

I hope you will too!

Powersheets main pic

I’ll keep you all posted on how these work for me and share some of my goals along the way!

Why I say sorry all the time!

February 18, 2017

I know annoy the heck out of people when I say I’m sorry way to much and at times that it doesn’t even make sense to say it. I’ve been told that and I’m working on it.

Why do I do that?

For the longest time, I really didn’t know why, but always felt it was important. The more I thought about and discussed with some close people made me realize why I did.

Being a “full time” patient has allowed me to build up a lot of gratitude over the years. Gratitude for my family, friends, medical care team, pain medication, etc. Sometimes it’s almost too much gratitude(if there is ever a thing of having to much of it) and find myself constantly striving to apologize to others for their unending help and support.

It’s a hard place to be in when you are the one needing the constant care and support, not even physically, but mentally. It actually gets old after awhile, but when you are dependent on your family and friends physcially and financially for something that is not in your control, it’s hard to not want to disappoint them on any level in life. You feel forever indebted to them.

As much as it’s important to not forget who has been there for you every step of the way, it’s just as important to not feel indebted to them.

I didn’t choose to have a congenital heart defect. I didn’t choose to have two open heart surgeries in under three years. I didn’t choose to not work for a good portion of my adult life. I didn’t choose to not date and be social.

 I have accepted that this disease is a part of me forever. But that doesn’t mean I need to be at the mercy of everyone who has helped me. I will ALWAYS be grateful for those who have and who may have to continue to helping me along in this life, but I also do not want to feel like I owe my life to everyone. Don’t get me wrong, I love doing what I can to show my gratitude. It’s so hard to explain and live out, but I know it is a part of trying to let me be my true authentic self and learn who I am in this life of living with a congenital heart defect. I believe allowing myself to feel this way will help me strive for my own hopes and goals.

Do you ever feel this way? Know you are not alone.