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Suffering

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.

 

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”.

 

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.

Congenital Heart Defect Awareness Week!!

February 5, 2017

It’s almost officially our week!!

February is in full gear and that also mean it’s Heart Month.

This is a big month for people me living with heart disease. But mine kind of heart disease is not what you might be thinking and that’s ok. The whole point of this week is for people like to share and spread awareness of Congenital Heart Disease. Any kind of disease is horrible and I would not wish upon anyone, but as someone who struggle with a specific disease that needs more awareness, I hope to showcase this week what congenital heart disease is all about and to ask for the continuation of prayers for a cure.

Did you know that every 1 in 100 babies is born with a Congenital heart Defect?

Presently, there is no cure.

Most babies and adults will face multiple Open Heart Surgeries.

Due the trauma of a major and sometime multiple surgeries, most if not all suffer from anxiety and depression.

Our Surgeons and Doctors are our biggest hero’s.

Our families see the good, bad and the ugly, will never leave our side and mean everything to us. They will sleep upright in hospital chairs, listening to the beeping of machines for days, barely eating and showering for days.

There are many black and purple bruises from constant bloodwork in our arms and hands.

A beautiful, but sometimes hard to look at scar will be on your chest forever.

And SO much more…

These are just a few things of what it’s like it to live with this disease.

There are days where I think I could definitely live without this disease, but then there are more days where I realize this is God’s will for my life and it truly is a beautiful journey of hope and fait each and every day.

Happy CHD Awareness Week!!! Let’s rock our scars and share who we are!!!!

How are you spreading awareness? I would love to here it!

We are LIVE with a NEW NAME!!!

February 1, 2017

Hello Friends!! It’s almost February AND we have a brand NEW NAME!!!!!

For those of you who know me well, my name is Mimi . Why you ask? Because the little people in my life call me that and it will forever be my name to them. 🙂 The nickname first came about 4 years ago when my first niece Nora couldn’t say Aunt Mary Beth. To be honest, it has stuck around for the second niece and nephew, as well my favorite family that I help watch every week. One of the little kids I help watch is my precious Goddaughter and when she says Mimi ALL THE TIME NON STOP, it’s actually truly heart melting. OK, maybe not 50 times in a row, but seriously, these little people have me wrapped around their little fingers. 🙂

I don’t have any children of my own and to be honest, I have no idea what my future looks like, especially   knowing of my Congenital Heart Disease. Although, I pray everyday that having babies is a part of Gods plan for me, right now I don’t have that. Is it hard? Yes, especially seeing all of your close friends and family raise beautiful children. But then I realize, if I had my own children right now, I may not be the same Mimi to these little kids that I adore so much and who truly give me the joy and hope to keep moving forward. It’s almost like they are all my own kids in a way, but I get a good night sleep 🙂 HA

This new name has been in the works and prayed on for a long time. Surprisingly, I used to be the opposite of an open book. I was a very private and personal individual until my 1st open heart surgery. It changed me. It changed me in a way that has allowed me to accept trials in life and be vulnerable in a way I didn’t think was healthy. Saying I am an open book is a pretty true statement now. At only 28 years old, I have been through a lot physically, mentally and emotionally. I believe this life long disease has molded me into a person that doesn’t want to be defined by this disease. Once I accepted that this was my life, I chose and still do(it’s a daily battle) to embrace what I have instead of what I don’t have. Trust me, I am not perfect and basically fail every other day, but I get up and try again.

Mimi’s Open Heart is honest, vulnerable, imperfect, and hopeful. I hope you will follow me along this journey through living with a Congenital Heart Defect, spreading awareness and sharing the good, bad and great days.

Always remember you have a special heart! Welcome!!!

Will the rain ever stop? And no, I’m not talking about the weather…

January 22, 2017

Happy Sunday dear friends!

I just wanted to quickly give some encouragement to those who may be struggling with their chronic illnesses. Friends, yesterday was a TOUGH day. I had an extremely tough week at work and was physically and mentally drained. I just feel like the rain in my life will never stop. I do wonder sometimes if I have too much on my plate these days, but then I remind myself how I’m working so hard to get to my end goal. And then I think is jeopardizing my health really worth trying to get to my end goal?

Right now, I am working two jobs, taking two masters courses and a slew of other things going on on a daily basis. I am up from sunrise to sundown. There are days where I forget to take my meds(which is a big no no when you are heart patient), not eat at all and lose sleep. This is not good. How did I allow myself to get this way?

To be honest, this is hard. 5 years ago, I had that “5 year plan” in my head and that went out the window almost exactly 5 years ago. Sound familiar? Actually it will be 5 years on January 30th. That was the initial diagnosis of my major heart problem. Didn’t do anything about for 4 months, but I’ll explain all that and why I did in another blog post soon.

Working for me is not like a normal work day. It’s hard. SO hard. I manage pretty well, but by the end of the week, my body is overload to the point where my Saturdays have become the “I do not get out of bed day”. And it’s hard because it’s Saturday. I have a ton of things to do or catch up on. Ahem…school work.  But, I just can’t physically pull myself together. It is literally like my body is telling me to STOP and REST! I am a fighter and I always lose this battle. I guess that’s God’s way of protecting me.

Yesterday, I just allowed myself to feel so hopeless about life, my goals, and everything in between. I have cried more tears these last 5 years than I ever wanted to and felt like it was another day filled with such suffering. Like the rain would never let up. To say, I’m done and I want to change is easier said than done. If I didn’t have this heart defect and trauma to my body physically and mentally, I may have possibly pulled myself together, got a workout in and so many other things. But, I didn’t do any of that because I simply needed to rest my body more than most people. I thought I was wasting away another day and it just didn’t seem fair, but necessary. I made the best of it by sitting near the fireplace and watching some Netflix.

Waking up this morning was a little easier than yesterday! Yay! But of course I am more stressed now between getting ready for another work and school week. It’s raining here near me and all I wanted to do was shower and get into comfy clothes. But I pulled myself together, showered, put on cute clothes and makeup and I feel like a new person. Yesterday needed to happen and will happen again this coming Saturday, but I’ve come to realize, it’s necessary and helps me to see my life from a different perspective.

If you are feeling hopeless these days with your life long disease, allow yourself to feel that way. It’s perfectly ok and actually necessary. But, try not to let it get to you for too long. Take a hot shower, put on makeup! Our bodies have been through SO much and sometimes feeling “normal” can help get you through the day. Remember, the rain will stop!

Are there anyways or ideas that help YOU feel better on the really hard days? I would love to hear it!!!