A New Year

A couple of years ago I started really focusing on New Years resolutions. I guess you can start them at anytime really. But mine, just so happened to occur around Jan. 1st. I was refocusing my life and trying to figure out my purpose. To tell you the truth, I think we all have many purposes in life. Mine, as far as I can tell, is to serve God, be the best mother/friend/wife I can be and to help others through my life experiences. Basically, to make a difference as best I can!

2010 was my most fullfilling year accomplishment wise. I tested my strength, and gave myself goals, feeling a sense of empowerment when I hit them. I did things I never thought I would do and was amazed at how much fun a year could be. The best part of the year was that I never thought with balancing children, work, family and friends, that I would have any time for fun! I certainly proved myself wrong! Often my children, family, friends and co-workers were included! I think 2010 was one of the best years of my life to be honest.

2011 was a year of giving back. I was so grateful to so much in my life, I decided to make 2011 of giving back and helping others achieve there goals. I was a support, I educated, I focused tremedously on raising money for an organization I truly believe in. Also, along the way without going into detail....I 100%, know I made a difference and helped some along their pathway of life:) To give back was not just rewarding, it filled my heart like never before! I did however learn so much about myself. I never realized how far a simple thank you went. To be completely selfless without a reward is one of the most humbling lessons I've ever had to learn. Yes, we all love to help others but sometimes our reward is to say, "hey, look what I did". Not to have the world know, but for at least a few friends to know. My purpose was to help others without a single sole knowing. Again, much harder to do than you would think. But, I did it....not just a few times, but many and let me tell you, the reward to see someone else achieve their goal or dreams is completly undescribable.

Soon after the year started, I suffered a stroke. I could have used recovery, or my many issues when recovering from a stroke as an excuse. But, I remained focused and driven on my New Years resolution. Sure, I have the typical resolutions...stay in shape, diet, ect......I truly value my New Years resolutions. I learned in 2010 how much sticking to them could change my life completly. Well, 2011 was no different. Sticking to my resolution, along with the help of many of you, helped me remain focused and never give up. These New Year resolutions drive me, mold me, test my character and teach me along my journey! With them I have accomplished more in two years than I ever have dreamed of. A focus is what drives me and pushes me to keep plugging along, even when the path gets tough. The ultimate decision on how my path will go is God's plan for me. But, he gave me a level head. He blessed us with free will and the ability to learn, grow and experience life. He blessed us with choices. I can't change what has happened to me but I do see that I have a clean canvas in front of me. Here and there, a drop of paint will splatter on my pretty picture. But, it's up to me to use it as a surprisingly unique splatter or to say my picture is ruined. Many times I know I make the wrong decisions and my first reaction is not the best, but if I step back & realize that every day is a new day and that I can fill it with the right choices, I tend to see things more positively!

So, what it's in store for 2012. Well, as I've learned my life is unpredictable and sometimes overwhelming. So, I'm gonna take all that I can & turn it into a positive. I am going to make this year about focusing on fulfilling my DREAMS. Big and small. I've learned that if you are happy, everything else will fall into place. Some of my dreams are going to more difficult to acheive than others but I'm determined to reach them. Some dreams might be fulfilled by an adventure or challenge. All I know is that why wait for dreams? Why wait and make excuse after excuse to accomplish them. I know that no matter what I do in life, I can always find a reason not to do something.

I've learned throughout my last 2 years that mistakes are ok. They are just stepping stones. Hey, if I didn't fail, then when would I learn anything? They make me learn more about myself and see a better way to achieve my goals in life. Sometimes, even what I thought were failures were actually blessings in disguise. They have actually lead to my greatest achievements. Funny sometimes how things work out. So, as I start taking the steps to fulfilling some of my dreams that I've been making "excuses" for, I will have to continue to remind myself that even if it's a baby step, it's still a step in the right direction. I'll never be 100%, sure I can achieve my dreams, but I can be 100% sure doing nothing won't work. All I know at this point is to go for it! Either I succeed or I learn something. How can I lose?

So, my friends and loved ones as we start a new year, I challenge you this year to find a New Years resolution! A focus that will drive you and inspire you! I promise you your life will never be the same! I hope to follow you and celebrate your life achievements just as you encourage and celebrate mine! Thank you all always for your never ending support and encouragement!!

P.S. Jamie truly misses my adventures & so do I! So, I've added them back in again. Not at the
same pace because remember I have dreams to fulfill but if you have any let us know!

"Back to Basics"

A couple of years ago when I started my blog it initially was to help my family and friends keep up with all that was occurring in my life. Then, it took a few twists and turns. It became a place to vent, cope, inform and encourage. I figured after I told my story I would be done.......well....almost 3 years later....that's obviously not the case. I never realized how much people care and honestly get hurt if I remain silent. I figured those around me would get sick and tired of hearing my never ending medical drama. Maybe that's the case for some. But, I found those who truly cared need me to be open as much I need to. So, today I'm going back to basics, informing you:)

Since my stroke in February, there have been many ups and downs. The second I get ready to inform you I get a curve ball or I am not fully aware myself of what's going on. It was explained by my new neurologist at NRH(in D.C.) that a person can go to many different doctors and get so many different perspectives. You have to go with who you feel fits. At this time "he" fits. He's right!! I have been diagnosed with several different strokes and even the number of them has been confusing?? How could this be? The culprit has been everything from atrial fibrillation, to a specific vessel in my head. Treatment has also ranged from medication to neuro surgery being considered. Thing is, they are all right in many ways. Some of the confusion in that I never realized how complex the head is and depending on the CT/MRI/MRA, technologist, radiologist and physician different varieties of information can occur.

Scary I know....you would think that possibly a distrust in a physician can develop. No way, don't get me wrong they can make a mistake. The thing is a physician has been given this amazing gift of knowledge and education. But, they can only do so much. They also have to trust in others around them. The radiologist, the nurse gathering information, the technician performing the test and lastly they depend on you the patient. Am I a good patient....if you ask them probably not. They aren't in my body and they can't read my mind. They are human just as you or I. Their job is to gather the information and paint the best related picture of what's occurring inside your body. If they have bits and piece and others fail (such as me the patient) it makes their job harder. I tend to want to get the appointment over and if they had asked the question I would give them the answer. It's not their job to do that. But, in my mind I hate to be a bother or it's the plain fact that I have somewhere to be and I just am growing weary of the never ending appointments. I am working on a being a better patient. I found that mostly, my confusing path is due to my complex case. My heart throws a massive curve ball and leads the physician down the path that it can only be heart related. Then, when they don't catch my heart doing what they thought was the culprit we have to hesitate and either wait (just in case it was missed) or rule it out. The best gift God gave us was our "gut instinct" trust it, believe what it says and you will always be right!

So, here is what I DO know. I have had two hemorrhagic strokes and another area of interest. My heart condition is very stable. I was suffering from some small seizures that were very concerning but now are gone. The cause was believed to be the trauma to my head. That was the biggest relief to date :) I have constant changes in blood pressure that can be a factor at times but if I take care of myself it is very well managed. My arrhythmias are just like 25% of the population and are easily managed. My heart pressures rise at times and cause a little build up of fluid but is also easily managed. Diet, exercise, rest and prayers are the key to feeling perfectly normal. Keeping me stress free is vital and hence the constant positivity. Hey, it works more than you could ever imagined. I honestly rarely feel stressed and that's because of an amazing group of people that surround me. I recently had a physician say, "You should be feel so fortunate for each day you wake." I nodded, said they were right, "I am blessed" and then never thought about it again. You can't focus on a perspective. Every day each of us wakes up is a blessing no matter what you are facing. When dealing with something you can't focus on the unknown and let it haunt you. Everyday, I wake up I make it the best it can be. Everyday I try a new coffee flavor, get to know someone who I have never spoken too, ect. Everyday, I thank God for this amazing perspective in life.

As far as my strokes are concern each week it gets better!! Biggest issue when dealing with a stroke as I stated before is not the physical, it's the emotional. You can read more about it in my previous blog if you haven't. I'm getting through with a hiccup here and there. But, it's always just a day here and there when everything seems to pile on top of me. It's only happens when I stretch myself too thin, push myself too hard and allow some of those feelings of "no one understands" slips in. Then I realize I have to put myself first here and there. Hey, we all should do that from time to time. When I'm feeling good it's time to push others around me to take that same time to themselves. It all balances out! As far as no one understanding. No, you don't, but how could you? Just like if someone is going through there personal issues that I have never experienced before. I'm not in their shoes and I don't live their life. But, I do know this that if you take the time to explain to someone how you're feeling, it not only helps them understand, they feel that they helped you in some way. Trust me so many have helped by just listening and even when my stroke signs peak through a friendly joke occurs. I don't mind being corrected when I get confused, being reminded 100 times to do something, being caught as I stumble from time to time, helped down a step, help me open something, asked if I hurt myself when my foot gets lazy, or even filling in the blanks for me when I can't finish a sentence. I don't mind those things because it's a sign that you care! So thank you for caring so much!

One of my major emotional issues I'm dealing with, is that I have this great new gift of life perspective. I want to do so much. I have these amazing dreams that my chronic conditions have made me want to pursue even faster. I hate being told to wait or maybe in the future. My patience isn't what it use to be. I don't wanna wait because I know how each day is a gift and that it can be taken at any time. I sometimes feel a clock is ticking, So, I've had to be happy with "baby steps". What I'm coming to realize is that those baby steps help me dabble in EVERYTHING I want to do. They force me to slow down and not only experience the moment but enjoy it more fully too. Those babies steps that I've been taking have proven to be these amazing "seeds" of so much fulfillment. The "seeds" have put me in a place in life that I could only dream of!

So friends, I hope this blog brings you comfort that I am in an amazing place in life. A place in life that sometimes pushes me down but it makes standing up so much more of an accomplishment.

I hope you all realize that just being there has meant more to me than you could ever imagine. My wish is that you always trust your "inner voice" in life and that it doesn't take a life changing experience for you to start taking those baby steps and planting your own "seeds" in life. Lastly, it doesn't matter what we are going through in life, how hard it is or even when you're told it's unachievable.....anything can be accomplished as long as we believe in ourselves and make that effort. Sometime, it just takes longer to get there.....be sure to enjoy the ride as you go :)

It's only as hard as you make it!

Many many times I have been asked & met with a blank stare. As if the words chronic heart condition, open heart, implant, strokes don't match me the person. I often get questioned a couple of times and then that look of, "your pulling my leg, right". No, I indeed am not. But, again I find it flattering because what do those words and face put together look like? A person has to remember I'm still considered young(YAY) when associated with those words and today's technology is even better than it was 5 years ago. The second question I get is, "How do you deal?" Well, that's a good question because it varies. Mostly, everyone sees the positive because that's what I'm aiming for. If I didn't look for the good in everything where would I be. For awhile I didn't want to talk about it and there are still many things I wish I had the strength to post. It may be assumed that I still am in denial at times. Hey, why not be? I don't wanna think about it all the time. I don't want it to claim my life. I do however talk and post a lot because of the fear I felt when first going through everything. I felt so alone besides turning to God. Yes, he's always there, but sadly he doesn't always talk back or respond as quickly as I'd like him to. So, I need to find it from others whom he put in this life for me. Also, as many of you all know I decided my true purpose is to be an example to my children. I was put on this earth for them and I hope that they remember me as the greatest mother they could have ever imagined.


I still understand the curiosity that many have over what my issues & fears are. Interesting enough as soon as I became vocal I found many in similar situations. So, how do I cope and deal? Well I could give you a long list of issues and what medications I take but I'll save you from the drama. If you truly would like to know feel free to ask. My life is becoming an open book:)


So, I will say of all the issues hardest to cope with it would be the emotional ones. The mind is a powerful gift. As with anything hard in life we do get down. So, I've encountered frustration. So much more in the beginning. I've dealt with losing my old self. Sadness because I couldn't do what I wanted and feeling trapped to take medications I just down right hate! It goes against my nature. They open the doors to many fears of long term effects. I'm sad that my husband has to call me ever hour to see if I'm not out on the floor. I feel a burden at times because I just can't feel good enough to do something. Lastly, there are fears.....and many of them. Will this happen again? Will they ever find the true cause of all my strokes? Will I keep getting worse? I'm scared to drive with my children and I'm scared to be in large places because what would happen if I passed out? I was scared for a long time to hold a conversation because I'd sound silly. I'm scared that I won't wake up in the morning and I'll leave my children with a horrible memory. If you were to read the odds, my heart condition is against me, my strokes are against me......so what do I do? I PRAY!! I FIGHT!! I live my life like there will be no tomorrow. I realize that I could be the healthiest of all of you and still have a tragic event happened to me next week. We don't have control, we don't know our outcomes and I can't focus on the fears because that would consume me. I deal with knowing I am thankful for today! That I was given life despite the odds. That I have a purpose and can achieve it. I deal with knowing that each day I'm on this earth I can make a difference!

"Letting Jesus Take my Wheel"

I was going to start my blog with all the many updates that are occurring in my life. I've had quite a few hiccups and Dax has us worried to death lately. But, then I realized something....do I have control? Yes, I have choices but do I really have the ultimate control? Can I change the ultimate outcome? No.....if you have faith then you'd realize you aren't the driver. I often have to let go of my wheel and allow my faith and trust in Jesus to take over. Therefore, I want to start with a story.....

A few weeks ago, I had a patient. As always, it's an emergency and we try to maintain our composure as best as possible in urgent cases. Everyone knew their part and performed their tasks, as if we were in a uniformed dance. The patient was quickly placed on a breathing machine and remained purposefully sedated. As with all my patients, sedated or not, I tend to easily touch them and sometimes even talk to them. In this case, I was doing both as the room cleared. The patient was stable and it was time for many to tend to all the other emergencies occurring. As the room cleared, I saw a man sitting about four feet away at the end of the bed. Someone had gotten him a chair and he was sitting.....watching me. He never said a word and from time to time he put his head down. He appeared to be in his mid forties. I continued doing what I was doing and finished up within another 30minutes. He still sat quietly, never saying a word. When I finished I pulled up a chair next to him. I introduced myself and asked him his name and relation. The patient was his wife. We chatted a few minutes. I tried to make him comfortable by asking him a few questions as if you would a first meeting and then told him a little bit about myself. I eased in the hard truths about his wife and that although very sick she would be o.k. He asked many questions and I answered. I'd leave and come back and ask if he had more. Soon, it was time for me to go and I was fortunate to take care of her another day that week. A couple of weeks passed and as I was rounding a corner the husband yells out my name from down the hall. I walk up to him and immediately he starts to cry. "Anne, I have been looking for you for days." Each day describing you.....then he stops.....he hugs me and says "Anne, I heard your story & how can something so horrible happen to someone like you?" "You touched my life, I told my wife about you, you have to meet her now that she's awake!" "You made such a difference in our lives and I will never forget you!"As he leads my arm to her he says,"I never met someone so full of life & full of compassion for others!" The husband again says, "How can a person be so happy when they have had such difficulties in their life." I answered with a smile and said, "What you don't understand, it's because of these difficulties I now am who I am." I learned more compassion because I was that patient. I learned the power of touch because I know what's it's like to need it so desperately. I learned to trust in a complete stranger just because of a touch or friendly face. I learned that I'm not the driver.......someone much more powerful than me is. I have learned to accept what he gives me, not ask too many questions, and try to make the best out of each challenge he ask of me.

So, is my life so bad after all? No way! There are days where I just find it too difficult to get out of bed. There are days that I'm fearful as a symptom starts to present itself. Many days I struggle with frustration from my stroke. Thinking no one understands. Those struggles make all the good days that much better. They help me realize what I am fighting for. I'm fighting for those patient's lives I still have to impact. I'm fighting to create awareness. I'm trying to show many, that no matter what you're faced with you can still make a difference and win a battle. It might not be a battle we asked for, nor an easy one. But, it can still give you a purpose in life & positively change the outcome of many others. I was put on this earth for a reason. I might have one main purpose or many. But, what I will tell you is this.....I was put here to make a difference. It might seem so small at the time but watch out, I have seen first hand how the strategic placement of each one of us has created a huge impact on many. If my only purpose was to change my children's lives that's good enough for me.

For each new bump that has occurred it has only made me want to achieve more & to fight harder. In the past three months I have helped make a well deserving little girl smile & feel a purpose. I have raised awareness to hundreds by just telling my story and Dax's. I have held two hands as a person passed because their family wasn't able to be present. I have raised money to save many future lives. I have made the very sick smile for a moment and forget their bad day. I have given a person hope because they see what I have gone through and feel they can do the same. Yes, you are seeing many "I" but what is amazing about that is my "I" are because of so many. So many who pushed me through hard days. So many who support and believe what I'm fighting for. So many who took the time to help me with just a kind word of encouragement. So thank you all.....I'm just amazed at what "We" all have done! Thank you Jesus for driving over the many bumps that have allowed me to view the world so differently!

Wow.....It's Been A Year Already!

I have always wondered why I have had to face so many obstacles in this life. I truly believe there is a reason for everything. With 100% certainly I believe I have endured everything that I have in order to face Dax's heart issues. If you ask anyone in my life or at work I'm the one who rarely sheds a tear and who is always collected even in the saddest situations/moments in life. I always hear how strong I am. Well, they haven't seen me when it comes to my children. I'm the first to shed a tear during a special moment, I'm the first to panic when something bad happens. For instance, I've seen decapitated bodies numerous times....but, Mya bites her tongue and I fall to my knees at the sight of blood coming from her mouth. I was told I needed open heart and I was perfectly fine with that. But, my kids need their tonsils out and I think it's the end of the world. I honestly, don't think I could have handled Dax's condition if I hadn't faced it myself. My experience has given me the comfort to trust that he will be o.k. no matter what he has to face.
Everyday for almost a year I have thought about Dax's yearly appointment. At first putting it far in the back of my head, pretending it was all just a dream. I last left off feeling so confused about the path to take with him. If surgery was needed J and I were not in complete agreement. I think it's important to be on the same page. Neither one of us wanting to be the leader in case it was the wrong choice. Dax's ASD was right on the marker needing to be surgically closed. By school age if it were to close it should have by now. The good thing is that it would be an elective surgery in a sense to prevent him from future heart issues like myself. We decided, since we didn't know what path his ASD was taking, to give him one year of sports and growth.
Over this past year we have watched Dax like a hawk. He only had one episode of palpitations, a few over heated events and a couple shortness of breath episodes. Although, is it because he is just so small and trying to keep up? He's a tough cookie for sure and never stops.
The week of Dax's appointment I was full of many thoughts. J deals with me so well. He knows what I'm thinking without me even saying a word. I know first hand that our lives can be changed with just one doctor's appointment. I mostly am fearful of having too many choices. Will we chose the wrong path for him? Is this doctor wrong? Is there someone better out there for him? Ugh...... I prayed every second I could.
We enter the hospital and I couldn't sit. J distracts the kids with ipods and hugs. When I finally sit because of the 1 hour and 30minute wait, my tremoring starts. Thank goodness for J's crazy humor. He truly is my gift in life. As they call us back we are all laughing hysterically.
Dax plops in the bed and means business. He knows what he is there for and wants it done and over with. An EKG is done and J's eyes raise up looking at me. He wanted to know if it looked o.k. It does....shew! I smile back. The doctor walks in so seriously. J looks him over and I just have to laugh. I knew exactly what he was doing. He is so fascinated with the different personalities and always after an appointment he tends to imitate each Doctor. Dr. R does Dax's physical exam without saying a word. Zero interaction with Dax. His bedside manner truly lacks but, that's not what we are there for. I view it as Dr. R seeing this is a serious moment and he knows we want him to get to the point. Dr. R states, "Let's hook him up and take a look." Dax lays back without a word and an echo is performed. The six of us in the room hold our breath. The silence is like none other. I immediately see the shunting from the ASD and grab J's shirt in fear. He looks at me. Funny, I think he has learned to trust my opinion before anyone else's. I was praying, I take a harder look and then I whisper..."it looks the same". To see shunting of blood cross where it isn't suppose too rocks me to my core. I don't care how big it is. I know it's not natural and it sends flashbacks of myself. My eyes start to swell a little. But, I take a look at my son who's smiling from ear to ear and I take a big breath. I wait for Dr. R to confirm. He indeed agrees it is the same size. Within a second I realize that it could be much worse. It could have grown. But, it didn't. As a family we didn't know what to do. We held our reactions to ourselves and asked a few questions. We decided to continue to watch Dax and monitor him. Statistics show that by teenage years he will have to have something done. He has a 70% chance of developing pulmonary hypertension by age 40 and an even greater chance of developing valve issues even sooner. Each decade that an ASD is left untreated, it is said that it almost can double in size. We are also concerned about the chance of stroke in the future. Our theory is that his ASD is on the smaller size and we are not happy with what the choices to treat him are. If we can wait even a year to treat him we will take it!! I personally am hoping for the next rising technology. There is a possibility of a cauterization type procedure that can basically close an ASD with a probe and radioactivity. Or even, closing it with a patch made from Dax's own skin cells. Our greatest gift in all this is that we have TIME!
We didn't really celebrate on the way home. We were quiet at first. I said
a few silent prayers and I could see J's face of deep thought. We almost spontaneously turned to each other and started to count off the many things we were grateful for. Thankful for all the positives of Dax's present ASD. We are thankful for the gift of knowing. That he won't be that teenage football player that collapses. We are thankful that we are more knowledgeable and have the ability to weigh our options. We are thankful that medical technology is advancing everyday. We are thankful that God has blessed us with the most amazing little boy who brightens our everyday!

"No matter how you feel, dress up and show up for life"

I use to think that a special dress, the nice sheets, the good drinking glasses and the scented candles were just for those special occasions. I would wait and wait for just the right moment. Although, most of the time I found I soon would out grow the dresses, I liked another candle scent and when I did have someone over they drank from plastic cups. I don't know what I was waiting for really and through my life's journey I realized that every day is a special occasion. Life's too short to waste doing anything boring or joyless. So, I now am blogging while drinking from that expensive glass, while wearing my cutest dress and burning my newest scented candle:)
I have held off for a little while waiting to post. Primarily because so much has happened that I didn't know where to begin. I was nervous to update because it's hard to post when I didn't have at least some answers for you. So, where to begin & how?
Since my stroke in February it has been a world wind of How, When and Why? In February I discovered I had two strokes. One ischemic and the other appearing hemorragic. Odd thing is they were in two totally different parts of the brain. One on the left front and the other in the right posterior of the brain. One I looked back and saw the symptoms but no major residuals and the other affecting my entire left side. I have since recovered 99%. Pretty amazing if you ask me:) It was a scary time wondering if the damage was permanent or temporary. I had many runs where I wobbled and many many frustrating obstacles with my left hand. I tried to adapt as best I could and to be honest it was more difficult than I ever let onto. My neurologist is a saint and had to repeat and remind me many times, "Anne, you have had a couple of strokes" "It is o.k. you are feeling this way, it is o.k. to be frustrated." In reply, I would say, "Real strokes....can you repeat that"? I was in denial I guess. Or maybe I just didn't want to play the result I was given. Funny, when I tell people they give me the, "she's pulling my leg look". In a way that's a compliment to me. I'll take it. I've never been much for playing the result, I go with how I feel...not what a piece of paper says.
Anyway, while trying to narrow down our plan I had another curve ball in mid April. Wait for it......ANOTHER bleed! This time in the right middle to posterior brain. That wasn't something expected. But, by now I should learn that "nothing isn't possible". That saying works many ways. If given a bad outcome I just want to know that's it's possible that I can conquer it. Because, odds are I'm gonna! I do get fearful. Many mornings as I opened my eyes I prayed out loud, "thank you Lord for allowing me another day". But, give me time and I start my game plan of concurring my next battle.
My neurologist called me and explained the situation with great concern. You could hear the difficulty of telling me in her voice. The concern of how I would take it. My first reply...."Does that mean I can't go on any roller coasters for awhile?" I think I threw her off guard for a second. I wasn't being funny and she could tell that in my voice. It was a serious question. You see my son and I were talking about our summer plans and his goal was to ride the largest roller coaster in the world. I told him we'll work our way up to it. When Dr. Y gathered her thoughts she said, "We'll ,make that happen!" You see she pushes me because I am not an 80 year old stroke patient. I am 33 and not many have been in my path. She sees that I need to make my rules but just remain cautious. To me that perspective from her makes all the difference in the world! If I was given the choice of, 2 years of an amazing life full of joy or 10 years of a long drawn out illness filled with fear and becoming someone I'm not. I'd hands down choose the 2 years!! All my doctors know that and respect that. What an amazing group of physicians that I have surrounding me.
We spent the next couple of months figuring out if the bleeds from hemorrhages were from brain vessels rupturing or just residual clots that my heart was throwing. I wore a special heart monitor for over a month called a loop monitor. Once the results were in I was found to be having electrical issues along with some valve issues. Some ventricle and atrial abnormalities were present. The most concerning was atrial fibrillation. Atrial fibrillation is treated several ways but mostly I would need to be on a blood thinner such as coumadin. It was agreed I would have to wait until my bleeds resolved to be 100% assured they were from the heart. Mostly clots from the heart turn into ischemic(dead tissue) and do not appear in the form of blood. I was to have another MRI in the following weeks to see where we stood. With the new bleed, some complications arouse but have since resolved.
I went for my follow up MRI a couple of weeks ago full of nerves. I had been very insistent on holding off on the blood thinners as I had in the beginning and I was fearful my choice could lead me in the wrong direction. But, as always, I go with my gut instinct. I firmly believe that when something occurs to our body, we need to allow it time to heal itself. Also, I believe in the power of prayer. If my MRI was bad I would be headed on a new journey. So.....I waited hoping and praying. It was GOOD!!!! No new bleeds, and in fact all the bleeds had turned to ischemic injury but the left front. The left has greatly improved and is so very minimal. FINALLY....I could breath! The power of the mind and prayer had amazed me yet again!
So, what's next? Well, we're working on that. The thing is that even despite the fact of all these obstacles I believe in miracles. I've seen them first hand in many ways! If you want to see one in your own life just walk outside or look at your children. Although, sometimes miracles come in odd packaging wrapped like big mistakes. The secret is to find the miracle in the mess. My health issues on the outside overwhelm many. I could say enough is enough! But, I choose to find the miracle! The miracle is that no matter what, I'm here and have beaten every odd handed to me. Along my journey I have been blessed in more ways than I could ever imagine. I have been given the gift to see "life" in a completely different way than many others. I've not just been given life but I'm living it to the fullest. My obstacles give me my next challenge in a way. God has never given me more than I could carry. Sometimes, when I feel my load has reach it's maximum level, I still realize the many gifts I have been given. I never compared my life to others, because I have no idea of what journey they have gone through. My life might not have come with a big bow on it, but it's still a gift. With each new journey I face in this life I will still NEVER play the result just because it's expected. I will live my life with no regrets, focusing on the little things in life. There is so much living that can be squeezed out of one single day! While in that single day I'll be the one showing up for it in my best dress, never waiting for that special moment because today is special enough!

ShoreWoman

So, how about this saying..."For every bad thing that happens in life so does something good." The many twists and turns that my life has taken me has been nothing short of...well interesting. Seems, time and time again I keep getting road blocks. Everybody has them, mine are just medical in nature. Haven't we all said, "when will I ever win"? I find myself saying that a lot lately. Seems every week there is something new I have to face. This week has been no different. My path will lead me to another inevitable trip to John Hopkins; this time meeting with unfamiliar territory. The neuro floor.....and the surprises it may bring. I have decided after a long talk with my neurologist and cardiologist that I need to be a better patient. I was so frightened to become a victim that it was hindering my care. I just was afraid to open my mouth because one word triggers an over abundance of tests. It is becoming a full time job. I'm kinda tired of hearing about my health....aren't you!! I wanna talk about the weather and my kids. Not, "What did the doctor say?" But, I now truly know it's because of such caring people around me. I also learned that I can't run from this. This is who I am...it's part of me. Does it have to consume me..."No". I can make this anything I want to. It's all about how you view the situation I always say. I look at my situation in the following light. I am a girl who has two beautiful children, a very sweet hubby, a wonderful family and friends. I have a job I love and a passion for photography that truly fulfills me. Oh, and I just so happen to have had multiple heart surgeries/procedures, a stroke or two, and what ever else happens. Because of who I am and what I've gone through I have affected a life, I have related to that scared patient, I have a new found perspective and I have been able to reach so many others and educate them through a little article known as "ShoreWoman". So today, one day from having my 2nd year heart anniversary I can truly say from every bad thing that happens in life....something good can come from it:)

How did I end up in ShoreWoman? Well, I think just from word of mouth. My friend Jan G. Whom I love dearly, tried to get a story placed in our hospital's personal newsletter for Heart Awareness month last year and it kinda spiraled from there. At first I actually declined. I was afraid the article would be over dramatized or not serve a purpose. As open as I am, I haven't always been in fear as I've stated my illness would consume my life. But, It has been helpful to my family and friends. Actually, all the feedback from my blog and on facebook always inspires me to keep fighting. Hopefully, people will take from the article that anything can happen at any age and that no matter what anything is achievable in life!! So here it is:

"I have zero fears now. I have a great sense of fulfillment."
Article written by:Marilyn Buerkle

After a medical journey that culminated with two surgeries for a rare heart condition, Anne Donaway has a new outlook on life.

Donaway will celebrate her second birthday this month. Chronologically Donaway is 33 years old, but April 9th marks the second anniversary of her last open heart surgery. She describes it as the beginning of her new life. Growing up in Sussex County, Donaway had no hint that she had been born with a hidden abnormality in her heart. She was a Cheerleader as a teenager, and she remained physically active as an adult. A husband and two small children kept her plenty busy; she was also a respiratory therapist at a local hospital, and she still made time to jog several times a week.

A beautiful young woman with a dazzling smile, Donaway has always had a positive attitude. She didn't want to worry her family and friends when she started to have occasional dizzy spells or periodically had trouble catching her breath. After all, as a health care professional, she saw sick people every day, and she'd know if she were really sick. She kept her symptoms to herself. "You see so many people who are worse than you that your situation is minimal," She said. Eventually Donaway had to admit there was something wrong. In August 2008, she finally went to a doctor for help. The physician she saw chalked up her exhaustion to anxiety--typical he said, for a working mother with young children.

She didn't believe him, but she hoped he was right. Her symptoms got worse. Her friends were getting worried.

Lyndsey Feather and Donaway have been close friends since they met in an orientation session when they started their jobs at Atlantic General Hospital in Berlin. "Anne is one of the brightest, sweetest, most sincere people I have ever met, " Feather said. "I watched her go through this process. She was definitely not feeling right, but she was able to justify it anyway." Over a period of months, Donaway's condition deteriorated, but she never missed a day at work. It was a nurse at AGH, watching Donaway struggle to do her job, who finally insisted that she see Jeffery Etherton, a local cardiologist. "It didn't take a rocket scientist to see there was a problem; it wasn't in her mind, "Etherton said. Donaway was ecstatic to find a doctor who finally believed there was something physically wrong, even if he wasn't sure what was causing the problem.

"It is so important to find a doctor who listens and understands,"she said. Etherton admitted Donaway to the hospital and ordered several days of extensive testing. After that, he recommended she see a team of experts at Johns Hopkins Hospital. That's where she learned there was a hole between the upper chambers of her heart, keeping more and more blood from traveling through her lungs, starving her of oxygen. Donaway jokes now that her reluctance to seek medical help was a byproduct of her illness. "Obviously I wasn't thinking right. I wasn't getting oxygen to my brain!"

Her condition was very rare. Etherton calls it "a very sneaky problem." The hole in her heart was disquised by a flap of skin and her problems were more severe when she was upright;many of her earlier tests had been conducted while she was lying down. It was clear that she would need surgery. Donaway and her husband, Jamie, had to make a decision. She could have open heart surgery to repair her heart, or she could try a less invasive procedure which would robotically maneuver a fabric-like patch called a cardio seal device over the hole. They opted for the patch. It didn't work, but that wasn't clear for months. The doctors wouldn't discover until much later that the patch had inexplicably become dislodged. In fact, the prongs that should have secured it came dangerously close to piercing her heart. For six months, Donaway continued to suffer, thinking mistakenly that tissue growth around the patch would eventually make her feel better. What should have been a period of recuperation was, instead, filled with more frightening symptoms.

Feather was with Donaway when she suffered one of several T.I.A., or mini-strokes, she would endure; this one left her blind for several minutes. We've got to do something, " Feather told her friend. It was time to face the prospect of open heart surgery. It was a risky procedure for someone whose heart had already been through so much. "The key is to overcome fear," Donaway said. She drew on her faith in God and the support of family and friends.

In April 2009, she was back in an operating room at John Hopkins. It was a six-hour procedure; her heart was bypassed for more than 40 minutes. Everyone believed once she had survived that, the worst was over. They were wrong. Doctors still don't know why, just hours after surgery, Donaway began to bleed internally. She was slipping away. But she wrote in a blog posting, months later, that despite the medical chaos around her, she knew she would survive. She felt that God was with her. Donaway was rushed back to the operating room for her second open-heart surgery in less than 24 hours. Surgeons were able to stabilize her condition.

It was, as she describes it, the beginning of her new life. There are plenty of lessons to learn from this dramatic tale: Don't suffer in silence, listen to your gut, get a second opinion.

But it is simply one chapter in Anne Donaway's dramatic life story. Her pain leading up to two open-heart surgeries is overshadowed by the determination that followed. "It is a testimony to her strength and her mindset," Feather said. "She was not going to let this derail her plans for her life." So, in December 2009, as Feather and Donaway started to think about resolutions for the new year, Donaway decided to make 2010 her "year of adventure." She laid out a plan to try new things, to live her life to the fullest. "I wanted to show my kids that I was down, but look at how strong I am. You can't keep me down," she said. Donaway proved it by flying a plane, competing in a 5K "mudrun," learning to shoot a rifle, kayaking, glass blowing, beekeeping, even riding a mechanical bull. She also used her new gift of life to help others. She became actively involved in charity fundraisers and she took time to share her journey of faith with local church groups. "I have zero fears now," Donaway said. "I have such a great sense of fulfillment....I know my kids see me as happy and strong." Her positive attitude has a positive impact on everyone around her.

"She had a brush with death.....She knows how important it is to spend time with your family and to help other people," Etherton said. "She's definitely a special person. No matter what, she's always positive, always upbeat, constantly trying to find ways to help other people."

As many who survive life-threatening situations do, Donaway has struggled with her purpose in life. Why was she saved in that second emergency? She found an answer last August. That's when she had her children's hearts checked, just in case. The test revealed a small hole in her 6-year old son Dax's heart. "I firmly believe that's why I'm here," she said. "I've been through the worst of the worst, and now I can help him." Dax is an active little boy who plays soccer and has performed with a local theater troupe. His heart defect has been caught early and that will make a difference. There is time for his parents to consider his options. It's possible that improvements in medical technology will expand his choices. What's clear is that he won't be alone. "She's prepared more than any other mother I know to go through this," Feather said. "Because she lived it."

I Will Not Be Broken

So, I'm sitting here thinking how can I start this blog. My feelings are not those of being upbeat but rather a little defeated. Hey, I never said this was easy. Sometimes, I might give the illusion that it is. Yes, I do focus on the positive and am so very grateful for the health and life that I do have. But at times, I too, get overwhelmed and oddly today was one of those days. Why it hit today of all days...who knows. I've given up trying to understand the human body but rather just go with it. Hoping and praying that God continues to lead me in a positive path. So, here's my day......

I had been scheduled to meet with a local neurologist who fit me in quite quickly. My appointment was moved up several times. I was in no hurry because what could she tell me or do for me that I didn't already know. The damage was already done really and I have been recovering quite quickly. I really have gotten to the point that doctors' visits are becoming a torture event. Same routine...see doctor...get tests(sometimes very uncomfortable ones)...get some answers...more tests based on those results.... It really has no end. Honestly, I want to go to a doctor for once and have them say, "WOW, you're boring see you next year." That never seems to happen anymore.

As I walk into the office the staff already was aware of who I was and what my issues were. They seemed to know me so well it was as if they were old friends. The doctor came in and I immediately felt comfortable. It could have been because I work with her and we have spoken on rare occasion. I knew she had a wonderful personality and a great educational background. We had actually run together in a local 5K. I have now learned that what is most important to me is a physician who gets me. Many are properly trained and have amazing gifts of knowledge. But, if they don't listen and don't understand me, I won't get anywhere, honestly. I've been to so many physician's that I realize that many times I'm just another heart/stroke patient to them. They can't help it. So, I went in with no expectations thinking, I'll get through the appointment...make everyone happy I went and continue on with life. Within seconds the appointment took an odd direction. I'd never been down this avenue before. Normally, I give myself a pep talk and prepare to defend against or discuss any procedures or new medications that may be thrown on me. But, my guard was down and she was allowed in....just her....just this once. Immediately, she became a woman I admired & trusted. She started describing in words things that I hadn't even admitted to anyone. The things that I thought were insignificant, now had meaning. Many of my symptoms I had denied because I so badly wanted to get better. She brought them to the table and wouldn't let me run from them. My mouth dropped.....I finally realized I had a significant stroke. To see her true concern as a mother hit me. It has always shocked me when someone first hears my story. I relive it over and over many times through them. Yes, I look normal. Picture of health right. But what should I look like?

As we dove further into my appointment it was made clear to me that this was not my first stroke....Excuse me? The residual bleed that I had was a different part of the brain. Based on old MRI's it appeared that it occurred 6months to 1 year ago. Occurring in the front of the brain. Her concern with that was there still was remaining blood that needs to be looked at. My new stroke occurred in the back of the brain affecting different areas of my body this time. I needed another MRI to evaluate the damage from both which is tomorrow. In addition, I am hiding my weaknesses more than I even realize. My left hand and leg are still significantly affected by my stroke. I'm just using other muscles to compensate. She actually was very impressed. Her conclusion is that I'm forming clots stemming from my heart. Medication is needed stronger than what I am currently on. I am very uncomfortable with this new medication and it would require weekly lab draws and close monitoring, not to mention the long term effects. So, I have a lot of research to do. I also have had a previous bleed and if another bleeding stroke, not ischemic(dead tissue) occurs it could be deadly. So, you can see my concern. I am truly torn. She has given me a few days to decide and is even calling my cardiologist so we can be on the same page.

So, needless to say I'm overwhelmed. Two strokes is alot to handle on top of everything else. I finally saw in her eyes the reality of a stroke and it put fear in me like never before. I had let down my guard and with that I saw the scary truth that I had been masking. Funny thing about me is that the typical stages through an illness that people go through...I go through them all in one day and move on. Already today I've been through anger, fear, anxiety and now a little bummed. But, as I listen into the other room I hear the following: Mya singing in her room, Dax laughing as his Daddy helps him with his homework and the dog's feet coming to find me. I still have them and I lived today! I was able to hold them in my arms and give them kisses and hugs. Jamie was able to literally sweep me off my feet and hold me. I was able to cook for them and take care of them today. Tonight, I will be able to read to them and whisper, "I love you", as I watch them fall asleep. So, I think after writing this I will be in a joyous and thankful mood. Thankful that any day I have is a Gift. A Gift, I for one will never take for granted! So, I end this with...Yes, another stroke can be added to the list. But, I REFUSE to be broken!

Don't Count Me Out Just Yet!

The weekend flew by and Monday came quickly. I had put everything to the back of my mind as best I could. I've actually gotten pretty good at that. I couldn't sleep very well and woke about 4am. I just wanted to respond to some of the beautiful messages I had received and I wanted to see the sun rise. If my tests came back negative it would require a much longer stay than I desired. Luckily, we were able to get the kids up and off to school and we were on our way. On our way as I was sitting there thinking and mentally preparing myself for what was to come I looked out the window and saw a beautiful sight. Was it a sign....you be the judge:) We arrive to Hopkins in record time. I actually always smile to see it. Poor Jamie's face is not the same reflection. I see Hopkins as a place of healing and hope. He sees it as my wife's being tortured and I can't do anything but sit here and wait. It's funny as we go in we don't even talk our bodies just lead the way. I've noticed over the last couple of years Jamie becoming more and more comfortable in a hospital setting. We've even developed a role. He allows me to lead the way in my care and he sits and listens. He knows the proper times when he needs to pull out the humor card and he's learned when I need him to be serious. His timing is getting more and more impeccable. As we are just about to arrive to the floor...Jamie looks at me and sighs. "Anne, I was hoping we'd never come back." In that moment I felt really guilty. I realized he has been going through this too. It's just not my heart and stroke issue...it's his too!

We get off the elevator and it's as if time went back to almost two years ago. Ugh....but the familiar faces helped in my fear. I was led back to prep for a TEE. A TEE is an echo of the heart. Only difference is they go through the esophagus to get a closer picture. Don't worry you're suppose to be asleep. But, for me I'm so curious I rarely ever am. They wanted to take a closer look at my heart vessels and implant. Checking to see if the cause of my stroke was from a blood clot that broke lose from my implant. As each nurse, fellow and doctor read through my chart it never failed: They would read, look up at me, read again, scratch(neck or head) and then with a confused look say, "You had a stroke?" Yup, and here's the MRI to prove it. Sometimes, even saying it twice. In a strange way it makes me proud. I feel as if I conquered a stroke so well that I am not the victim. But, then again I'm reminded how anything can happen at anytime.

I.V was placed and then many questions were asked. I was led to the TEE room and all hooked up. I was recognized by a nurse and the cardiologist doing the procedure. Kinda strange when you're at a hospital as big as J.H.U. The fellow was wonderful and she was shocked at how comfortable I was to allow her to do the procedure. The nurse amazing!! I reassured her before we started that I would be a great patient as long as she explained what they were doing. But, warned her I hate to lose control so I'll be wide awake. She winked...I don't think she believed me. Medicines were administered and I became very comfortable...But awake:) I watched the whole thing just as I had my previous TEEs. They all were chuckling in dismay. The last couple of pictures are in fact very uncomfortable so I squeezed hard and the nurse and attending MD responded by holding my hand and stroking my hair. Reassuring me. You truly value the presence of touch in those circumstances. I don't care who you are. As the last pictures were taken they dosed me with enough medication that I was finally out. It was just what I needed!!
I had won the award for most awake patient during any TEE procedure Jamie was told. He responded with, "Yup, that's my girl!"

I was told my implant was functioning beautifully and intact. Yes!!!!!! One hurdle has been passed! I was suppose to be seen by a neurologist but my case is a simple one in JHH eyes. Nothing that can't be managed locally. They did say based on my MRI record, that the bleeding was stable and that it was very small in nature. I was told that nothing could be done in a week and half's time anyway. We needed to give my body time to hopefully absorb any residual blood left. What a relief!! There were a lot of worse case scenarios possible for yesterday and the outcome of yesterday could not have gone any better. Today I called my primary cardiologist and his response was, "Such awesome news! You've answered my prayers!" Now, that is why I value him so very much! So, that's my update! I will be seeing a neurologist very soon to get more in depth information about my brain injury(no jokes..lol) and praying no blood has remained. Although, besides my hand that is getting stronger each day and a few jumbled words. I feel amazing!! So, yes...I'm a 33year old woman that has had a STROKE. But, my life will go on just as it did before and I will be loving each and every single moment of it!! Love all of you that support and help me be a better person in life!


Picture taken right after TEE...finally out cold:)

A What? No Way!

There is a saying that goes like this, "God does not give us more than we can handle." I have thought about that statement many times over the past couple of years. Trust me, I'm not any stronger than anyone else. So, why has he chosen to keep piling more obstacles on top of my already battered body? Is it a test? Hummmm...a challenge? I had finally come to terms with the fact that I went through all I did in order for me to deal with Dax's issues and to be given the knowledge to help fight for his proper care. Now another challenge has presented itself. So, the story goes like this......

Since my open heart I've had a few battles. Sometimes an accumulation of extra fluid around my heart which is managed by a drug called lasix. Most of the time it's due to an overworked heart. Other times I deal with an insanely low blood pressure. I'll start feeling run down and get myself in a spiral that normally will resolve itself in about 2 days. Well, last week was just like any other hiccup. I had been battling low blood pressure 70s-80s for about 3 days. A little longer than I had before. I was exhausted and to even get up to get a drink was tiring. I used any reserved energy to tend to my children's needs. It was about 6:15pm in the evening and I told Jamie I just needed a bath. I ached all over and I felt as if I were coming down with the flu. A little lightheaded and just feeling miserable. All of my normal symptoms of a drastically low blood pressure. I made the major mistake of not taking it before I got into the tub. My only focus was to get some sort of comfort. After about 5 minutes in the tub, I noticed my arm felt numb. At first I thought...Wow, the water must be too hot. Within the next minute I realized it was only my left side. I made the possibly life saving decision to climb out. I calmly called to Jamie and said I wasn't feeling right. Within minutes my whole left side went completely numb(almost painful in sensation). I had no control. Talk about mind blowing. I called a friend and discussed what to do. Within 30min with no improvement we were out the door. You might ask, Why so long? Well, partly to have someone watch the kids and I was in denial thinking it would pass. When I entered the hospital I was able to drag myself in. One look at me and they had no question what it was. Everyone was wonderful and the care was spectacular!! I was told I was having a Stroke. I knew what it was but my ears didn't want to hear it. I'm 33 years old. I've had everything in the moon it seems happen to me and now this. No way!! 33year old women don't have open hearts let alone strokes too! The doctor talked about what to expect and as I was calmly asking questions the tears started to run. I put my head down and prayed after he left. Although, extremely disappointed, I still had that unshakable feeling that HE would take care of me. Slowly, as the evening progressed my foot, face, and some arm motion came back. I was praying I had suffered a mini stroke(TIA) only time would tell. Typically, a three to four day stay is expected. I got away with a two and a half days. I battled a few bouts of a significantly low blood pressure that required fluids. I was very hesitant to allow any medications to be started. I had been down that road before. Drips, IVs, oral medications. Sadly, my body needs to work itself out. I'm a firm believer in not over medicating. I will take what I am required but very minimal. I investigate every drug that is placed in my body. Two echos were performed to check the integrity of my implant. They appeared normal. But, an echo can only tell so much. Also, a CT was taken and came back clear but my MRI had not. It appears I had some optic nerve damage and some ischemic(dead tissue) injury to the back of the brain. There is also a patch within the ischemic injury that appears to have been bleeding. My stroke either stemmed from a blood clot from my implant or an even rarer stroke cause by a severely low blood pressure. Because my implant was placed at John Hopkins it was decided that it would be best for them to take a look there. By the time I was discharged my hand had not improved. At times my foot is still dropping and I still am having difficulty using my left hand. But, with each passing day both my hand and foot have improved drastically.

So, the questions have been flooding in to me. Mostly, how am I feeling....am I scared....what are my limitations..and what am I doing to prevent future strokes? Well, shockingly I feel just like normal. My only issues I have are frustration at times which tire me mentally. I've lost my keys more in 5minutes than I had all year yesterday. I watched my coffee maker pour coffee onto the counter because I forgot the cup. I hate asking for help. Sorry, that's how I am. My spirit has mostly been great. But, I am having one issue. If one hasn't noticed I live life quite a bit differently than most. In order to deal with a chronic illness I have to live day to day. I have to live life to the fullest and never allow negativity into my life. I never sweat the small stuff. I am a firm believer that I'd rather have 5 great years than 20 boring/bubbled years. Only HE knows when my time is up. If it's going to happen it will happen no matter what I do to try and stop it. So, why not live it up? I am a STRONG believer in the power of the mind and it's abilities. Have you ever heard the stories about cancer victims who had cancer for years without knowing it and then they were told they had cancer. Two weeks later they are dead. I believe that's because they gave in and allowed the cancer to consume them. Sorry, if my beliefs are hard to understand. But, I have to be true to myself. I will NOT become a victim of heart disease or a stroke! So, for those of you who are struggling with this. I know you are trying to protect me and because you don't know how else to help me you want to place me in a bubble and shield me. I've had so many call me crazy, stubborn or thinking I'm in denial. But, I assure you I am NOT. I need to have a crazy life filled with challenges of my abilities. I need that to heal and to cope so that I don't become that victim. I have faced so many challenges that many would have given in on the first round. So, if your scared or concerned just sweetly tell me...hug me. Tell me you love me and I will listen I promise.

Am I scared? Yes and No. At times Yes, out of my mind. But, that's short lived. Again, I have trust in HIM. I have to trust since we all don't know when is our time is up..I am no different.

My limitations...well for now I have been placed on no traveling or exercise until Monday. At which time I will be getting test done to further investigate what happened. Since there was blood seen on my brain we have to be sure I don't reactivate it or break another clot free. As far as my hand. I have done aggressive physical therapy at home. Thankfully, to some PT friends who have helped me out without actually having to go in for PT.

As far as future strokes. Well, I'm always at risk because of my heart history and previous strokes. I was placed on blood thinners to keep my blood running smoothly but have temporarily been taken off of them until Monday. So, all I can do is pray like crazy and if a stroke does happen anytime in the future know the signs and get help right away.

I hope this has helped for all those wonderful people in my life who are so very concerned. I'm up walking and look normal. I'll joke about what happened and am very comfortable to answer any questions. Lastly, am I frustrated with God or upset this happened to me?? Nope! I love him more than ever and I trust that I'll one day find the real reason why this happened to me. Until then....I'm gonna live it up and SORRY you can't stop me. But, please have faith in me that I am not careless or irresponsible with my life. I just want to show my children that no matter what obstacle they are given in life they have the power to overcome it!