On September 25, 2016 I was diagnosed with Multiple Bilateral Pulmonary Emboli. It was one of the scariest days of my life. I have been suffering from many chronic illnesses for twenty years now, but I was never given a life-threatening diagnosis before. I have faced many rough days, and have spent many nights awake with fear, but this hit me the hardest. I didn’t know how I was going to deal with this information.
I usually work through difficult situations by writing blogs and poetry. This was new territory for me though. I never had to write about a life-threatening situation that I was in the middle of. This was not fiction, or a distant memory, this was happening now, and writing about it would make it all too real. I had to try to distance myself from it in order to survive. I had to try to forget that there are currently blood clots all over my lungs which could kill me in an instant. Which could take me away from my family, this beautiful Earth, and all that I love. This time was different. I tried to distract myself, I tried to keep busy, I tried to rest, I fought to get through the day.
I am sorry to all of you who are currently facing life-threatening diseases or illnesses. I now know how you feel in my own way in regards to what I am facing. I can’t know exactly how you feel or what you are going through, but I wish you hope, strength and lots of love.
I was told that I would have to take blood thinners for up to six months. I am extremely sensitive to medications and was not able to tolerate the pill forms of Eliquis or Coumadin. I was able to tolerate Lovenox in the hospital so my hematologist agreed to let me take it though it wasn’t the normal protocol.
My husband who is a registered nurse injected me twice daily with this life saving medication. It prevents the existing clots from getting bigger, and it prevents new clots from being formed. The shots in the stomach are painful, and have left my entire abdomen bruised and tender. I bruise and bleed very easily now and have to avoid doing anything that could result in bad injury, especially to the head. Some people do fine on the blood thinners, but since I’m so sensitive it has been very difficult for me to stay on them. I have asthma, Chronic Lyme Disease and anxiety and this medication has made all of these conditions worse. I feel strange, dizzy, nauseous and not like myself. My life has been put on hold these past four and a half months and I haven’t been able to enjoy much. I’ve barely gone anywhere besides to take my children to school.
I have not been able to write much due to my anxiety, and the fact that I feel like I can’t put into words what I’m going through until it’s over. I’m so paralyzed with fear, that I can’t think clearly. I have many trapped words in my head waiting to be out of their prison. I look forward to the day when they flow freely, dancing around the page, unencumbered, raw and beautiful.
Though I’m so grateful and lucky to be alive, I can’t wait to truly live again.
And that brings me to the phone call.
Yesterday, I had a CT Lung Angiogram with contrast. This test will allow the radiologist to see if all of my blood clots are gone. This test will let me know whether or not I can have my life back. This test will let me know if I can breathe again, with less anxiety, and more joy. With more happiness and fun times for my family, a family I have woefully neglected for a very long time. I’ve been sad, scared and angry for too long. I pray I get the chance to make it up to them.
My hematologist is supposed to be calling me today with the results. I jump each time the phone rings. My heart starts beating very rapidly like the Tell Tale Heart. Will I be free, or left with its maddening heartbeat?
And so I wait, and in between taking and picking up my children from school, I will hope, I will pray, I will try to believe that I deserve some good news.
Let’s hope it comes soon.