From Philly to Alaska, This is me...

Hello all! I am a 35 year old wife and stay-at-home homeschooling mother of 2. My husband and I have been married for 17 years now. Yes, your math is correct. I jumped into marriage early.

I grew up in Philadelphia with my four other siblings. We were raised by a God fearing mother who did all our raising from her bed. Chronic illness runs rampant in my family, you see, especially so with the females. My Mom suffered from a severe form of Lupus. Her life was pain, doctors  appointments, and hordes of medications to manage symptoms. She had memory loss and seizures. She couldn't make the meetings, but she made sure we did. This post is not about her, however...

I grew up watching my Mom suffer and learned how to care for someone chronically ill. Never in my worse nightmares did I envision myself in similar shoes. I've suffered from anxiety all of my life. Depression followed suit after I moved out of state. I struggled with depression and anxiety for years before, during, and after having my children. Social anxiety has been particularly crippling. But with the proper counseling and medication, I improved quite a bit. 

It was my Mom who noticed I was slowing down. I was stiff, achy or just in pain constantly. I thought I was just out of shape. So I busted my butt and lost 30lbs! I was so proud. But the pain continued. My Mom suspected Fibromyalgia, so I looked it up and realized I had most of the symptoms. I was formally diagnosed a couple years later. But through pacing myself (as best I could with two young children), stretching, medicine, and other techniques, I felt like I was getting somewhere...

Then I was told I had type 2 diabetes. I was appalled! Some illnesses you develop of no fault of your own. Diabetes, I thought, was self-inflicted. A result of over indulgence and a sedentary life style. Of course, this is not quite the case. Regardless, I was embarrassed and overwhelmed. Food was my crutch to cope with long bouts of depression. After a couple years I was able to limit my sugar intake to one sugary item a day. Eventually I lost the fixation with sugar and was able to bring my A1C number (blood sugar level) down close to normal! I was over the moon with this accomplishment! Woo Hoo!!

Then I found myself having trouble breathing. I'd walk a few feet and have to bend over double to catch my breath. I thought I was having anxiety attacks. Eventually, I noticed that laying flat made me feel like I was drowning. I then had to sleep in our recliner propped up. Even then my husband noticed I was breathing in a distressed fashion while propped up sleeping. I would wake up with a jolt and not be able to breathe. It was like waking up under water. It was a terrifying experience. Needless to say, I wasn't sleeping much. I finally went to see an urgent care doctor (I had to be wheeled in) who took an x-ray of my chest. He sat me and my husband down and told us that my heart was enlarged to a degree he hadn't seen since a 65 year old patient cane to him a year before. Heart Failure needed to be ruled out immediately, so he sent us directly to the ER. There I was diagnosed with heart failure and they had no idea what triggered it. We were devastated! How can this develop in someone as young as me? Why this on top of everything else? How can this be when heart troubles do not run in my family? Why? Why? Why? I have a 13 year old and an 11 year old to raise. Why??!

Months of diuretics, beta blockers, ACE inhibitors, doctor's visits, blood tests, CAT-Scans, x-rays, echocardiograms and more ensued. My ejection fraction was at 19%. My heart was struggling to  pump oxygen rich blood to major organs. I was hospitalized twice. Paramedics had to be called to our house twice. After four months, my symptoms improved dramatically, but the medicine did not help my heart get better in any way. I was crushed. My cardiologist referred me to a heart failure specialist who ordered an MRI. I was then given the news that I had a rare congenital defect called Left Ventricular Non-Compaction (LVNC). It's a degenerative condition where the apex of the left ventricle is spongey instead of solid muscle causing blood to saturate that part of my heart severely weakening my heart's ability to pump. The only treatment is managing the symptoms and preparing for the inevitable heart transplant I will need. So someone walking around and living their life today will need to die in the future so that I have a shot at living. I'm also at risk for sudden death due to the  blood clots that tend to form in the spongy area of my heart. Off to the electro physiologists I went. There was told I needed a defibrillator. 

Sorry this is so very long. It's been a long journey. But I'm so grateful to be apart of this blog, and I look forward to reading about your journeys!