While New Year’s Day is when the majority of people reflect on how their previous year has gone and make goals or set dreams for the upcoming year, for me, I tend to do this on the last day in February. Rare Disease Day…a day where many of us come together to raise awareness by sharing what it’s like living with a rare disease.
As many of you know, I was diagnosed with a rare disease Fibrosing Mediastinitis (fm) back in 2002 related to a histoplasmosis infection I possibly had contacted at some point during my early childhood. At the age of 27, I was given no more than ten years to live and was strongly encouraged to make arrangements for Skyler as doctor after doctor told me I was dying and needed to have her care in order before I passed. Here is an article I did a few years ago with my hometown newspaper to help spread awareness and my doctor describes what fm is pretty well!
In 2007 after extreme symptoms of turning purple, passing out just from bending over, ending up in the emergency room because of severe memory lapses and the chest pain which kept me up countless nights in pure anguish…it was discovered that my right lung was now functioning at less than 11%. I was also diagnosed with Superior Vena Cava Syndrome as a result from the fibrosing mediastinitis…the first of many symptoms I would eventually develop over time because of the fm…
As much as my secondary diseases mention cancer being the causes…fibrosing mediastinitis is not cancer, therefore, with no treatment to improve the fibrosing mediastinitis, there are no treatments to improve or cure any of my newly developed illnesses so our intervention becomes a guessing game…
I finally found one doctor who knew what fm was and was still willing to put four stents in my SVC. This would not help my lung but it would possibly improve all of my symptoms I had been experiencing. It was a very risky move at the time but my parents and I concluded that I had no other option but to at least try the first promising intervention since my diagnosis five years prior!
In 2013 I was diagnosed with another rare disease called Pulmonary Arterial Hypertension…again, a result from my first rare disease of Fibrosing Mediastinitis.
This is clearly why Rare Disease Day is so important to me and I want to continue to share my story in hopes that it will provide encouragement to someone else!
I have participated in Rare Disease Day a few different ways in the past by having our state representative read my story on the house floor at the Capitol and then one year I also spoke at the Capitol. I also went in front of our city council one year and requested a declaration that the Mayor have the city of Waverly declare the last day in February as Rare Disease Day which he did!! Last year I made a personal video of my life and what it’s like living with a rare disease. I received so much positive feedback that I decided to make another video this year! Unlike the first video that was a quick overview of the first 15 years living with a rare disease, this time I just highlighted the ups and downs of what the last year has brought….
Four angioplasty procedures in which the first three were done through incisions on both of my arms to open up my SVC stents in February 2018, June 2018 and December 2018. The fourth angioplasty with ballooning was done with incisions through both sides of my groin to open up my pulmonary artery stents at the beginning of February 2019. I also had pulmonary function breathing tests, countless ct scans, xrays, venograms and lab draws not only for the fm but for my diabetes, as well as a total of TEN injections in my right eye.
The past year also brought heartache as my grandma passed away and my uncle was diagnosed with stage four cancer, went through chemo and radiation and we are praying he continues to stay in remission!
HOWEVER, what a year of celebrating it was too!!! I had a good report on my follow up back surgeries, this past month there was significant improvement in my right eye meaning the eye injections got pushed back to every six weeks and Asher started kindergarten!! I started attending BSF, bible study fellowship in which I am digging into the Bible and learning just how sovereign our God truly is. That group has connected me with some wonderful women and I am excited to see where God leads each of us and our new friendships!
My husband and I took a vacation with all four of our kids to the Smoky Mountains and Charleston South Carolina in September, we took a weekend trip to see hot air balloons, I went golfing with Tim for the first time together (which is sad because we both love to golf haha) and then all six of us were able to go to Panama City Beach after Christmas to spend the New Year’s with my parents…a gift from my parents we could not refuse to turn down again!!
Tim and I were talking about how we had actually done more things this past year as a family than the entire ten years we have been married. And while we were extremely blessed that health and medical procedures, jobs, time and finances worked out for us to do these trips, we were also able to find joy in the day to day everyday activities. I don’t think we’ll be doing anymore big trips soon but it sure was a lot of fun to see the kids enjoying so many new experiences and I was able to cross a few things off my “memories in the making” list!!
What truly made this past year amazing, however, was the fact that I got to cross off the very first item I wrote on my list from over 15 years ago!!! I got to see Skyler graduate!!! Something so many didn’t think I would be around to see! Here is a picture of Skyler and me when she started kindergarten and then both of us on the last day of her senior year! We didn’t know it yet, but my face was swollen in that first picture because my superior vena cava was completely blocked…100% closed!!
I never liked the way I looked in this picture but now I want to show it off to the world…because this picture is a reminder to me of just how big our God is!! And He is so so good!!
I can still see myself back then as if it was yesterday…in bed every night crying and often times punching and screaming into my pillow for God to make the pain stop! I was so angry at Him for not “fixing” me. My life seemed unbearable and I had moments when I didn’t want to kill myself…but I really didn’t want to live either. That picture was from 2005 and I would not receive stents to relieve any symptoms until 2007! Five years since my diagnosis before I received any type of intervention to help me feel better!
While I am still not cured and in fact have even more health issues today and sometimes more pain than I did back then, my relationship with God has grown and that makes such a huge difference in how I view my health, my circumstances and life…because this life is extremely hard!
I have many horrible days where the pain and symptoms of this disease takes over, more times than anyone will ever know, and I am forced to stay in bed or take numerous breaks throughout whatever activity I am trying to accomplish for the day. And sometimes I get sad when I recognize how many pictures of me and my kids are at doctor appointments but I am confident in God’s love for me! Unlike those days in the past where my faith was easily shaken by the results of my medical tests…I am now more at peace during those dark times because I am hanging on to God and His promises with hope that I will be healed when I enter in to His presence someday!!
God has given me a new desire to live this life even if it’s filled with daily pain…even if it means angioplasty every three months to open my stents back up…even if I have to receive a shot in my eyeball every 4-6 weeks for the rest of my life (but that would definitely be challenging haha) even if I will consistently attend doctor appointments and have never ending tests…even if I suffer tremendous heartache.
There is so much life to be lived in between all of this junk though and hopefully that is reflected in my video. I want to encourage anyone who is facing hard circumstances right now whether it’s a rare disease or any type of health issue, failing relationships, struggling finances or whatever…don’t give up!!
Make your own video or write a list of all the positive things that have happened in your life big and small…because those small things are really big!! And when you look back on your past year I pray you will discover that perhaps…just maybe…you smiled a little more than you thought you did in the midst of all your hardships and you can be reminded of your motivation as to why you are still here!! Keep fighting!
Here is the link to my video…