I feel like dancing!

I am not sure why I have not been blogging...so much has been going on and I have a lot to share...between healing ,holidays and transitioning back to the workforce, I guess I have been a bit overwhelmed.

I just had my six week device check appointment at the Cleveland Clinic this past week and all was well! The device is operating properly, and healing well. The only events recorded were a series of atrial fib's and they were all on the night where I was dancing at our company Christmas party!

The fact that I feel like dancing is a great reflection of the success of the surgery. For the longest time all I felt like was sitting, or sleeping. The improvement I have felt in my energy level so far has been the biggest change and I hope it continues. I still have times of feeling like I "over did" it. For the most part I feel like I am getting better! For Christmas we received a Kinect, and I have had so much fun dancing to the game! I hope I continue to have the energy to keep it up! In February, I return back to the clinic to the Women's heart failure center to meet with my cardiologist and that day she will perform an echo to see if any of the enlargement has gone down and hopefully tell me my ejection fraction has improved! So medically, that's where I am at.

This year has been quite the journey! In our extended family we have gone on this medical journey , baby bro had surgery, had two weddings, been reunited with my niece, struggled with finances,( mainly due to me having to miss work for medical reasons), watched two of our dear ones struggle with substance abuse...answers to prayer, and healing with relationships. There was a lot of good mixed in! What a beautiful mess!

Through all of these experiences, both good and bad, we have grown in our faith, and bonded stronger as a family. I have really found out who my true friends are and who will ask me how things are going even when they know the answer might not be so good.

And yet , I have been able to end out this year with a feeling of optimism and a huge desire to DANCE it out! I am looking forward to seeing what this year will bring! I have a lot of confidence that it will have a lot of good in it!

Unzipped...

Unzipped...

I have heard the following quotes several times in the last few months... "You are too young to be going through this!" , "You don't look sick!" ,"Your too young to have a pacemaker!","You look fine to me" ( I had a nurse say that when I was in the hospital, not even looking at my chart or my vitals) ...

Of course I agree, with the fact that I feel too young to be going through this, but it just is. I cannot change it now. I must admit, that hearing people say these things to me is building into a frustration. How do a respond to any of these statements? "Oh I look fine, well then send me home, I must be OK, I don't really want to be here anyways!" "Or, I am too young, I am going to cancel this surgery and wait until I am 65!" I am glad I am being told I do not look sick, I certainly am not going for the "sickly" appearance! I try very hard to not look sick although I have feel like I look haggard at the end of the day a lot lately! I know that this post sounds a bit sarcastic or angry, especially for me. I have tried very hard to be positive in any thing that I put out into cyber space. I do not want to be "Debbie Downer", I want to be the person full of energy and positivity. I do feel like I have spots of being positive throughout this experience. Honestly, I am at the most positive emotionally and mentally being prepared to have the surgery than I have been during this entire journey. If I can single out this part of my life and put all the outside factors going on in my family , I am ready. I am ready to take this on and feel better! I feel like this is going to be the catalyst to feeling physically better. In fact I am so positive about how much better I will feel after the surgery, that I hope I am not setting myself up for disappointment!

So next time you see someone that is ill or is going through emotional issues, mentally unzip them! Not in a sexual way, I am not talking about unzipping clothing, think about unzipping the skin, and realizing that there is more going on inside people than the eye may see. I am not suggesting that you don't try to give encouraging words! I know I need those, and I have been surrounded by people that have blessed me with encouragement! Just take a moment, and think about the words you are saying, and what could be possible responses to those words?

I Hope that I am getting my point across well. I am not intending to judge statements people have made to me, only to admit that they are starting to weigh on me and I have allowed them to discourage me. That is my challenge, something I need to work on.

THANK YOU to all those to have been positive , encouraging, and have listened to me whine!

Do not worry.

I posted part of this on Facebook today- but I wanted to expand for my Blogger friends:

As I was looking out the window this morning I saw a little bird cleaning itself and protecting its nest. That image reminded me of one of my most precious verses : Matt 6:26, "Look at the birds of the air, they do not sow or reap or store away in barns, ye your Heavenly Father takes care of them, are they not more valuable than you?"

This is a verse that I cling to and remind myself often. I am a total worrier- I worry about what I said or didn't say- I worry about my children, my spouse, my Friends, my family. I worry about little things from years ago, like "maybe I should have let my friend pay for that meal, but I didn't want them to think we always expect them to pay" or " I should have called" or "I should have wrote a letter", the list could go on an on. I worry about my health- especially now. I worry about money, and things I should have and should not have not in regard to it.

I need to remind myself of this promise on a daily basis- it is a lot easier said than done, but I know that HE will take care of us, and he has plans to prosper and not harm us. It is at the difficult times that we sometimes feel so close to those promises, and hold onto them with hope.

When I was in the hospital recently, I was visited by the Chaplin twice, and she gave me a really cool analogy, that was introduced by Anne Grahm Lotts- to make the 18 inch leap between your head (trust) to your heart (faith)- she went onto say that a lot of us trust that Jesus will take care of us, but we don't allow ourselves to have faith that he really will- we still worry.

So I am telling myself today, "Do not worry"

I hope this gives you some comfort as well.

Battery Included...

Battery Included...

At the end of June I had a follow up Echo cardiogram, and the very next morning my cardiologist called me...(that's never a good sign) He told me that my Ejection Fraction (google it) was decreasing, this last Echo showed it to be between 30-30%, the previous Echo I had in April was 40%- Because of this, he suggested that I get a second opinion, and take a more aggressive approach to my treatment for the Congestive Heart Failure. His recommendation was to go to the Cleveland Clinic to meet with a doctor there. This past Monday was my appointment at the Clinic. Over the waiting time (between the echo in June and this appointment) I was feeling worse.

I am feeling tired, and short of breath and really emotional , and I am having a lot of PVC's.

Also over the time I was waiting for the trip to Cleveland, I was joking about feeling like "Dorothy waiting to go to OZ"- there are so many similarities! (Comparing the Doctors at the Clinic to the 'Great and Powerful Oz"..."If I only had a {good} heart" ,etc.) the most ironic thing about that comparison was the fact that when we pulled up to the Miller family Heart pavilion, it was a tall green tinted glass building! -My Oz! I felt like Dorothy felt , full of excitement to find my answer, and fear of what lies ahead, I entered the large green building...

On Monday, I met with three Doctors, Dr. Zimbwa a cardiologist, Dr. Hsich , the attending cardiologist, and Dr. Kanj, and electrophysiologist. I also had to go back on Tuesday for a cardiac MRI and I elected to meet with Cardiac Rehab nutritionist while I was up there that day for the MRI
The very short version of the results of the visit are:
1. I will have to have an ICD-Pacemaker placed in my body, on November 11.
2. MY meds were adjusted and added to , now I am on 9 medications a day.
3.I will be following a strict Heart Failure/Diabetic diet.

4.The Cardiac MRI showed more fluid around my heart-lungs than was revealed on the Echo, so one of the additional meds that was added is a second diuretic that, along with the dietary sodium reduction, they hope will pull the extra fluid away from my body...

Right now I am trying to process all of this, the emotion of the journey ahead of me, adjusting to the new meds, and feeling physically spent, and the financial reality of all this is becoming a bit overwhelming.

I am working hard on being thankful.
I am thankful for...

My support system of family and friends.
Doctors with knowledge, skills and access to technology.

That I have a job
That I have a plan of action, which has a very positive outlook of feeling better in time.

I know that there are many more things I can add to that list at this time, these are the most important and the things I am focusing on.

There is a line from a Mumford and Sons song that I keep focusing on that says "You are not alone in this, as brothers we will stand and we'll hold your hand."
As I turn 42 years old tomorrow, my hope is that this 42nd year of my life will be one of healing, hope, growth ,positivity and joy! I also hope that I can get back to the part of me that likes to share positivity and joy! I know I can get there again!

Breaking my "avoid being alone principles"...

I was inspired by this video, I have always had trouble being alone, and want to figure out how. My dear friend , Betsy has always been a good example of this. When I watched this video I was reminded of her stories of going out on a date with herself...I need to figure out how to do this...I think it will help with my previous post...

I have good days and bad days, and this one is...

You are probably wondering why I put this photo on with this post...it is because this was a good day, I have many, this was a really good one, it was almost a year ago, and my toes were in the warm sand on Longboat Key...the other reason, is because of my tattoo...I chose the tattoo with a lot of thought over a year ago on my 40th birthday. It says "Thank You" in several different languages. I love culture and language, but I also am a very thankful person, sometimes I forget that part of "me"...I need to focus on what I am thankful for. I feel that when one is going through emotional or physical trauma (in my case my health and the stuff going on with Leah) that our emotions tend to default to negative emotions. I feel like we need to be very intentional about being positive an work at it. I am trying very hard to do this. My new canned response when someone asks me how I am doing is "I have good days and bad days, today seems like a good one!" , I need to mix it up a bit so my response is more authentic and sincere, but this is my first attempt at getting back to my core ,the positive ,and thankful me.

I do want to be very careful not to be fake or nonchalant, because there is some really serious tough shit going on in my life. I can not pretend like it is not happening, but I also can find the positive in every situation, and I have a huge list of things to be thankful for.

I want to feel JOY! I am ready for it! Bring it on!

-Chel

Seven Pills a Day Keeps the Doctor Away?!

For some reason, taking all the meds is getting to me...maybe because they are making me so tired, maybe because I have never taken anything but asthma meds, and vitamins on a regular basis, maybe because I feel worse than before I started taking them, or that I feel dependent on them...I guess I am. I have come to the realization that I will be on at least two of the meds (accounts for four pills/day) for the rest of my life, and the fact that they seem to make me feel worse rather than better, seems to be a looming reality. I think if I took these meds, and I felt great, I would look forward to taking them! When I went for the Echo last week I was told that the enlargement had not gone down at all, and nothing had changed. I was a bit disappointed in that, until I had encouragement from those around me, with words of wisdom and support. I am so blessed to be surrounded by loving people that each have one way or another to encourage. Some it is simply saying that they love me, for others it is "tough love", and for some it is taking a laundry basket up the steps, or offering to help with my daughters shower. Whatever it is, it is all valuable and is helping me cope with the DCM... So I will continue to take the meds, and follow the Dr.'s advice...eat healthy...( I have made significant changes in that area I will blog about in the future) I am not completely discouraged, I am really not. I just needed to write it down. Chel

Next...

Here is my youngest getting ready to head out on the road in his own car...

It seems like yesterday that he was riding around the house on his Tonka tractor!

I don't really have much to say but this event seems to mark the begin of a new era in my life...my kids are getting married, owning cars, so on and so forth...

The future is left unwritten and I am looking forward to seeing what it will bring!

Processing...

I have been diagnosed with Dilated Cardiomyopathy with Mitral Regurgitation- see this link...it is a lot easier than me trying to explain it.

http://www.mayoclinic.com/health/dilated-cardiomyopathy/DS01029

I have been having symptoms for a long time and have been ignoring them...for many reasons which I could list, but at this point is is not going to do me any good to go back and say..."I should have..."

Over the last month I have gone through a series of tests, blood work, wearing different versions of heart monitors, in fact I am wearing one right now and for the next thirty days...in three weeks I will meet with my cardiologist and the "Pacemaker doctor" (EP) to discuss the possibility that I may need a pacemaker. I have also been put on two meds, one is a Beta Blocker and the other is an Ace inhibitor. My doctor is also trying to discover the cause . If you read the link, you can see that there are many possibilities. I can rule out Cocaine use, and alcoholism right of the bat! One of the things I was tested for this week was Lupus.

If it wasn't for a dear Friend that has gone through this disease with her spouse, I would have been very shocked to hear my doctor say that, "You are in heart failure." Thankfully , she explained to me before the visit that this is a general term used for heart disease that simply means that your heart is failing to properly function. I am so glad to have her as a resource. It is so strange but all the sudden I feel awkward around my dear Friend that has the same disease, I don't know what to say to him all the sudden! STRANGE! I will work on figuring that out because I think it would be helpful to communicate with him about it!

I am in a period of processing all this information, dealing with the emotion and reality of the whole thing, adjusting to the meds, and trying to rest. I really feel horrible. I am constantly short of breath, having arrhythmia's everyday, tired, and my emotions are all over the place.

I am surrounded my loving caring friends and family and that is amazing, I hope they can understand the changes I am going through. I find myself just randomly starting into John's eyes, and he says, "What's up?" and I can't answer him- I just keep staring at him. One minute I am being my goofball self, and the next I am melting down.

It has been awesome to have Lyndsay and Andrews wedding and my job as a distraction. Hopefully I will be understood at work because I am having trouble focusing, and I have had to come in late/leave early several times for appointments/blood work, etc.

I am trying to be open about this recently so I am not mis-understood. I hope that I can get treated and start feeling better soon. I hope that I can adjust to this so it is not the only thing I can think or talk about.

I will keep moving forward, try not to get discouraged, and turn to those who care about me. I will not let this get the best of me!