I asked myself that very question this week when I thought about the blog or lack there of, of the blogging.

Lets see… last time I was writing, I was letting you know about my new therapist and my struggles with PTSD, anxiety and depression. The battle still rages on but my new meds, therapist, circle of trust, prayer and reaching out to our Lord are the only way to fight the battle.

What’s happening now? I have requested my records from every hospital I received care at, and I am preparing  to send them to Johns Hopkins. I have requested an appt from both the cardiac side and the pain management side at Hopkins.

…. I was recently speaking to a second cardiologist who is following my case (aka-hes the cardiologist that gets called at my local hospital), and he encouraged me to go to Hopkins to explore different treatment options and  better research. His best word of advice was “don’t be frustrated with the journey, just keep going”, basically, it doesnt matter how twisted, frustrating or disappointing this journey has been, but each part is a part of my healing. Each step gets us a little closer to answers or a solution…RELIEF.

So, I ask for your prayers that the record requests are quickly processed and we can get the appointment at Hopkins scheduled.

Later gators.

…no matter how hard you try, you can’t shake ’em. 

My poor cardiologist has had quite the year with my case. Bet he wishes he wasn’t the hospital doctor when I rolled in for that first stress test. But alas he was and so I can’t shake ’em. His prescribed med list and contact info goes wherever I go. God bless the man. He’s probably lost count of how many calls he’s gotten about my case from other physicians. 

But I wouldn’t want any other cardiologist looking over my heart and here’s why. About 6 months after surgery and about that many hospital stays, the sarcastic smarty pants he first knew began to lose her smile. And he was the first to point it out. Undue emotional stress and cardiology have a link, even more so those with PTSD have a greater chance of cardiac events. And of those who have heart attacks about 70% experience depression. He encouraged me to go see a mental health team. 

I waited and pushed it off….If we could just figure out the chronic pain I’d be okay….if I lost more weight I’d be okay. If I prayed more I’d be okay. I was even told so by some well meaning priests. 

But as time went on I knew I needed help. Counseling, meds and love of family and friends was what was needed. It takes courage to ask for that kind of help. And I’m so grateful I did. In the words of CS Lewis “courage, dear heart”. 

I found a Christian therapist who will integrate faith with our sessions. I’ll see my psychiatrist every couple months and I’ll check in with my support system on a regular basis. 

There is such a stigma with mental health, especially within the Catholic Church. Where’s the line between despair and depression? Words like “you aren’t praying enough” or “just have hope” get thrown around. If it was that easy, I would. Oh and my personal favorite “you look fine”. Uh, thanks? 

Yes, I battle depression, anxiety and PTSD as a child of God. I invite him into it to heal my heart from the inside out and I beg for his help to carry this cross at times. My mental illness isn’t my identity, being his beloved daughter is. 

If you are struggling seek help and know I am praying for you, especially those who are battling a mental illness. 

So yes, my cardiologist is like a crazy uncle. But I’ll let my familial uncles try to figure out which ones the crazy one 😉  

I can’t believe it’s been so long since my last update. Life has a way of doing that to you. 

I would say we are in the “pain management” stage of life right now, on multiple fronts. The doctors are using some new meds to manage my PTSD and it also works to manage the chronic pain and it appears to be working. It’s building up in my system, so until it’s resolved, they do not want me working full time. The plan is to go back in a week or so. Praise God for my awesome coworkers who are helping cover for me and for a fantastic Pastor who cares more about me as a person, than the bottom line. He has been very supportive and understanding and I am most grateful. Today, I had the last of the scheduled cardiac/pulmonary tests and for the first time EVER with one of these tests, I didn’t end up being sent down to the ER or admitted for further observation! Praise God! I think the quote of the day was, “I’m so happy, I’m doing a jig over here.” -Mom
My Pulmonologist will get the results in about a week and a half. So we sit and wait. Or rather just keep moving with life until we hear back. 

Overall, things have been steadily improving over the couple weeks and it’s good to be going in the right direction. I’ve been blessed abundantly over the past few weeks so I want to remember these:

1. Regular skype time with a dear friend. Highlight of my day. 

2. The love and support of my mother and my “inner circle”

3. My boss and coworkers continually supporting and wanting what is best for me and working extra hard to cover and serve the parishioners we so love. 

4. Better pain management. 

5. My medical team of doctors. I have an awesome team and while they drive me nuts at times, they work so diligently with me on my case. #masscardsforallaround

just a little heart humor for you.

Nothing crazy happening here, but just popping in to update. 

The Good: 

• This doggy was top dog in puppy class this week. She did awesome! We are seeing some improvements on the home front too.  
• I was seen by a new Physical therapist today and she thinks she unlocked all the pain…more on that below. 
• Family is in route this weekend for a visit. 

The bad: 

• My bloodwork showed that my A1C went up significantly since last month. This happened before, so we are restricting diet and upping the meds again. 😦  
• I have had an appt everyday this week with a different specialist, so I am exhausted. 

The ugly: 

• Finley has destroyed/chewed two sweaters, one soccer ball, one mailing envelope, two cardboard boxes, 2 Ziploc bags and her personal favorite: TP. 
• It’s been raining for days. 
• I have had pain consistently without any relief since Sunday. 

What’s the story with the pain? Here’s the facts:

• It is related to the sternotomy.
• It’s not cardiac or pulmonary natured, although I do have angina controlled by nitrates. 
• Narcotics are a no go as an option for treatment, muscle relaxers barely touch the pain, and ibuprofen only dulls it. 
• My cardiologist had me follow up with my GP about two options.: tramadol and some other nerve pain med. My GP would like to try a 3 prong approach (aka: “you and I will figure this out with cards/Pulmonology”)-massage therapy, aquatic/land physical therapy and adding tramadol for moderate to severe pain.
• It is becoming clear that one approach just won’t work. I just pray for some relief. 

What was the PT breakthrough today? 

• Turns out that post surgery I never learned to expand my diaphragm to allow my lungs to fully expand. I pull by back and neck back just enough so the lungs can expand a littl bit. Your body is supposed to move 4-6 cm with each breath. I move zero. My PT has never seen this before. 
• I have such pain in my neck and back because they are doing the work with each breath. They are supposed to do none of the work. 
• I am having shortness of breath, cardiac chest pain, lightheadedness and increased heart rate because my heart is having to work hard due to the lungs and blood stream barely getting enough oxygen due to my very shallow breaths. 
• Some of the sternum pain is probably due to the muscles being so tight (like a clenched fist instead of an open hand that easily moves) due to not being used/adhesions from my incision. 
• Aquatic therapy will open me up without stressing the body, land therapy will work on the incision & strength building. 

Gluten free?

• With all my allergies, my anti inflammation diet, cardiac friendly and diabetic friendly restrictions, it’s been tough. 
• I cheated once and felt so sick all night, so that won’t happen again. 
• I almost had a meltdown in the grocery store, next to the can of beans. 
• I’ll be meeting with a nurse/nutritionist at my GPs office who is going to help me with coming up with a plan. 

I never wanted to complain about this chronic pain. But my GP put it well, “stop trying to be so strong, so we can help you”. A.K.A: being honest with yourself and knowing it’s okay to ask for help, even if it means a 3 pronged approach, is huge. 

Chronic pain takes a toll on the body, emotionally and physically. And also spiritually. This was the first week that I was honest with myself about how tired I am of pain and with God. There is a lot of anger in my heart, because I can’t answer the why of “why do I have to live with such chronic pain?!?”.

 I sat after communion last week, begging for any relief and pretty much laying it all out before God. I smiled at the nice usher as he passed the basket, all the while bearing my heart to God, and not gently. Much laid behind that smile. 

But as I sat there, I thought  about what I’ve learned from my new job; is you never know the burden one is carrying: a broken marriage, addictions, emotional, physical or sexual scars, a sick loved one, emotional trauma, a wayward child, the list goes on… But  The church is beautiful in the brokenness of her children. It offers peace, grace, love, forgiveness to its sinners and it saints. 

So where am I going with all this? The reality is that I had to be honest with myself to be honest with God. He waits patiently to restore his children and I have confidence He will, I just pray for the grace to continue to carry this Cross, ask for my simon of Cyrene when needed and choose joy amongst the pain. 

How was y’alls weekend? Ours was pretty good, errands, church and floating in the pool. Hello summer! Last summer I wasn’t allowed to swim and so mom in solidarity didn’t either. So we are making up for lost time! 😎

In the back of my mind were two appointments today. Rheumatology and cardiology. We were waiting with baited breath for the rheumatology results which showed no connective tissue or auto-immune disorder, so we have no answer beside the fact that they broke my sternum and put me back together for the inflammation and pain. 

..although I was tempted to skip my cards appointment, reason got the best of me and I went. My Cath site looks good, still good news on that front and because of the recent testing, we know my grafts are open and my heart is functioning well at the moment. Doc said “see you in 3 months”. We’ve tried this road before and so my prayer is to actually make it that long-no ER visits, hospital stays or calls to the office. Nada. Zilch. Nothing. Please say a quick prayer for that. 

Pain remains a big problem. Because of my other medications, they are out of options to give me. So I have just accepted that this is as good as it gets. Take a breath. Did that hurt? People have asked me what my pain is like so I can only explain with every breath I take I experience pain. And even throughout the day, pain. For now, no more tests, I’m allowing my body to rest. 

In other news, I have gone gluten free as of today. There are some great resources for anti-inflammation diets and gluten is the first one to go here. We are praying we see a difference. 

We had a problem with a medication causing me to gain weight (it’s been promptly removed/replaced) and a problem with a cardiac patient saying “to hell with this cardiac diet” for a few weeks. But as of today, we are back on track. 

I also got some direction on exercise today, so I swam some laps when I got home and it felt good to be active again. Today, I’m taking my body back. 

As I was leaving I was talking to my friend Carina and she said “girl you need more than these doctors, I know what you need…you need God”. It was a good reminder to stop and allow God to be a part of this healing, from the inside out. She sent me this song:

I was asked this week by someone how are you handling your recovery? I smiled and said good when in reality, I’m still processing everything and working with all my doctors to still figure things out like medications, diagnosis, etc. I was talking with my counselor recently about my PTSD/anxiety and I explained how frustrated I am that I keep feeling like the wheels are stuck moving forward emotionally, and she put it so sweetly, “everytime you try to move forward, you have another scare or hospital stay, lets work on this one step at a time.”

So how am I handling my recovery? one step at at time. physically. emotionally. spiritually.

We had a little scare last week in regards to my heart. I was at work and did not feel right. My coworkers were busy with various things/around the church somewhere, so I called 911 on myself. My coworkers quickly came to my aid once they realized what was going on.

The EMTs got me wheeled out of the parish office and into the ambulance. Before we had even left the church parking lot, they had started an IV, given me nitro and run an EKG. I knew something was up when the lead EMT, said ‘borderline in lead…’ and they were transmitting the EKG to the hospital and calling ahead. Then he said to the other EMT, “they are activating the heart team”.

When we arrived they yelled, “is this the 27 year old STEMI? Room 7, the crash cart is there”. I wanted to scream at the nice nurse, “what other 27 year old female to have being rushed in here with a heart monitor on?” But I kept my mouth shut. The nice EMT said its going to happen fast so get ready”, ‘um, excuse me, what is happening fast?”. In walks two doctors, 3 nurses and some techs. The doctors introduce themselves, start asking my history, checking my medication list, and saying ‘prep her for the Cath Lab.’ They see a change in my EKG from the last time I was there that indicates to them what could be a ‘borderline STEMI’. Do I consent? Yes, go, if you are saying I am having another heart attack by all means, lets go.

Heart Cath #5  in less than a year.Being that we were at a different hospital than usual and me being me, I ask the nice nurse as they are wheeling me, if this doctor is a real cardiologist and has he done this before? Not realizing the doctor was right behind us. (I also asked my cardiologist his credentials the first time he did one of my CATHs, so apparently its just what I do). Good news. He was a real cardiologist.

In less then 15 minutes, we were in the Cath Lab and starting. Once he is done, the doctor informed me that there were no blockages and it could have been a vasospasm (spasm of one of my coronary arteries). They send me home a few hours later and tell me to follow up with my cardiologist in a week.

Did I have another heart attack? No. Could it happen? Yes.

We are drawing very close to the anniversary of my heart attack  and so all those memories came rushing back, the feeling of fear, loss of control, having to surrender myself into God’s hands and pray a quick examination of conscience and Act of Contrition on the Cath Lab table before they push the medications to put me in La-La Land.

Its scary. Its real and its my life.

I will for always and forever me a cardiac patient and my life will be filled with many more tests. Is it exhausting? Yes. Is it scary? Yes. Is it painful? Yes. But don’t you worry, silly little heart, I am not going down without a fight. You may throw some good punches somedays but, I’m a heart warrior, thank you very much.

So please keep the prayers going, my doctors are still watching me verrrrrrry closely and working diligently to get to the bottom of all of this. We need your prayers!