And we’re back! Hello All!

If we are facebook friends, you saw my prayer request earlier this week regarding some decisions my cardiologist and I had to make to try to manage low heart rate and near-syncope episodes. We still aren’t seeing much relief, but we need to give the medicine we stopped about a week to get fully out of my system. I appreciated everyones kind words and prayers! And it prompted me to bring back the blog.

My intention with the blog has always been to help others, especially young adults living with chronic illness, so we are back but with more of a focus on living with chronic illness, helping someone who lives with chronic illness, celebrating victories and asking for prayer requests rather than just sharing health updates. Due to insurance, legal, disability related issues, I was unable to share a lot of what was going on over the past year. It was a doozy of a year, but we made it through.

Since my update last May, we went back to the Cath Lab 10+ more times, had multiple interventions, had a vascular surgery, got a surgical infection and was on IV antibiotics for 6 weeks, went back to the Cath Lab two more times and had more interventions.

My case continues to baffle doctors, simply because no matter what medications we throw at it, I continue to occlude my vessels. We know its due to the two genetic conditions I have and one of the conditions we treat with 5 Lipid medications while the other condition is currently untreatable.

Over the past year, we lived simply to survive. We spent more time driving back and forth to Hopkins, in the hospital (cumulatively, I spent about 4 months in the hospital) and each admission required us to recover and try to reintegrate into daily life. Perhaps you felt we disappeared or withdrew from life, but in reality we simply were trying to get through each day, one day at at time.

With that in mind and in resurrecting the blog, I would like to kindly share a PSA. Remember you never know fully the trial that someone is walking through. We have heard some hurtful things, experienced gossip/detraction firsthand, had things shared in confidence repeated and overall been disappointed by those who we thought were our circle. Sometimes we don’t share because 1) its my story to tell. 2) we have to process what just happened 3)its very personal in nature 4) we simply don’t want to. And quite frankly, we’ve been burned. So, please accept that what we share, is what we are willing/able to share at this time.

We love and appreciate everyone that has checked in, asks us how we’re doing, invites us to dinner at the spur of the moment because they know we aren’t in the hospital, listens to us vent, takes care of our puppies, has laughed and cried with us and prayed for us. Your companionship on this journey is invaluable.

We live a life that can change at any moment. New symptoms throw us into more doctors appointments or admissions and any day can start great and feeling good, but end with at trip to the ER. Our life is unpredictable and we often have to cancel plans or just mom goes, because I don’t feel well. Our time is not our own. Take for instance in the last 3 weeks, I had 15 doctors appointments. Thats more than most people go to in a year.

Here’s what I wish people knew about our last year. It was tougher than the first 3 years. We battled a cancer curveball, we lived in and out of the hospital and my heart had doctors basically running in circles. It was frustrating, it was heartbreaking and it was physically/emotionally/spiritually draining.

But I am so proud of how Mom and I made it through. We leaned on each other in the tough moments, laughed in the comical ones, prayed through the most difficult moments and praised the Lord for the victories, both big and small. We fought through it all and we made it. We continue to fight the good fight.

Please keep the prayers coming for resolution the the heart rate, near-syncope episodes!

All that to say, welcome back!