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

10 Things Patients Want From Doctors

10things

Here is a little back story to this post, in January all was fine and normal. I was working 40-50 hours a week in management at a convenience store and I noticed I had been more tired than usual but I thought it was just from working so many hours and my shifts flipping back and forth from first to second, etc. Well during the middle of January, I started having pain in my ribs and in my sternum; I thought since there was bloating also involved that if I drank something carbonated and could belch that it would help. Unfortunately, this wasn’t the case. Things got worse. I finally went to the ER the next morning where they thought I had blood clots in my lungs, turns out they read the CT wrong and were not familiar with the anatomy of a Fontan patient. A month later, I was finally able to see the Adult Congenital Specialist who immediately wanted to throw me into the hospital without a plan of action, from then on it was a disaster.

If you know me, I don’t like hospitals. I don’t know if it from the amount of time I spent in them as a child or just the weird vibe I get when I am there. I’m honestly not a huge fan of even visiting people in the hospital so obviously, a Dr just wanting to admit me without giving a reason was very unsettling.

After numerous rants about my experiences from January to June, my mom told me I should write a book- I started thinking, a book wasn’t going to happen but a Blog, a Blog was possible so here we are. I invite you to join me in my journey as I advocate, raise awareness, educate, and create to stay sane (ok I realize I’m just simply trying to keep what little sanity I have left). I will share my story of how Congenital Heart Defects and Congenital Heart Disease affects myself and my family, as well as the impact it has on others who battle the same conditions or have family members with the same condition. I will have a few guest bloggers join me and I hope you will welcome them with open arms. I also plan on sharing the crafts I work on as well as anything else that is important to me.

You can find out more about me on my About page.

Now here is why you originally came, 10 things Patients want from Doctors.

  1. USE ENGLISH– although you went to medical school, we didn’t. Please explain things in terms we can understand. If you are going to use medical jargon, break it down to a level we can wrap our heads around.
  2. BE PERSONABLE– we are coming to you in times of crisis, while this might be your everyday thing, we need to feel secure around you; there is a good chance this is a new experience for us.
  3. EXPLAIN WHY– if you want to do something, explain why; tell us your reasoning. My biggest complaint is when Doctors just want you to be okay with wanting you to undergo a procedure or testing without knowing why it needs to be done or the benefits. If you feel I should be put in the hospital then tell me why.
  4. ADMIT WHEN YOU DON’T KNOW– be honest with us if you don’t know what the outcome or what the future could hold then admit that you don’t know. One of my biggest pet peeves is when Doctors just say something to have an answer to give. Don’t use scare tactics to get us to do things, don’t exaggerate how good or bad our condition is.
  5. DON’T PUT US THROUGH MORE THAN WE HAVE TO– while I understand that testing is important and it is how you determine what is going on, many of us either do not have insurance or our insurance is subpar. Tests and procedures are expensive and often painful. If something isn’t necessary then don’t do it, medical bills pile up without extra help.
  6. TAKE YOUR TIME– we are taking time out of our lives to travel to your office for our appointments if we got to see you for more than five minutes that would be great! If I’ve waited longer for you to come in the room than you spend talking to me, there is a problem. Don’t push us off on your Nurses either.
  7. COMMUNICATE– talk to us, tell us what is going on. If you want a procedure done or a follow-up appointment then you have to communicate that to us. I cannot stand when I get a letter in the mail saying I’m scheduled for a test (that I had no idea about) and I do not even know who ordered it!
  8. TREAT US LIKE FAMILY– Tell us what you would tell one of your family members. If your sister, brother, children, or wife had these symptoms, what would you recommend? Not everything HAS to be tested asap. We know some things can wait and see. Help us know the difference.
  9. DON’T BE A PILL PUSHER– medications are not always the answer and sometimes they can do more harm than good. As a patient with Fontan circulation, I already have issues with my liver. Be mindful of that when you want to put me on a ton of medications. I would rather go the natural route if possible than taking medications, those add up quickly too and insurance doesn’t always cover them.
  10. STOP WANTING TO SEE ME NAKED– please advise your nurses that if you don’t have to have me completely undress then allow me to maintain what small amount of dignity I have left!

Let me know what you would add!