A few years ago, when I became physically disabled from Tarlov Cyst Disease, I fought back like crazy. I fought to keep the house functioning the same way it would as if nothing was physically handicapping me. I fought to not need anything. I fought to find answers. I fought to hold on to my faith. I realized I was fighting to get back to the exact point I was at in life, when the floor collapsed out from under me. As every area of my life was slipping through my fingers, I fought to find myself. My entire identity of WHO I was the past several years, I realized in the blink of an eye, wasn’t really about who I was but WHAT I was able to do. So, there I was, not able to DO what I had been doing, and completely uncertain where this journey was going to take me. Who was this woman looking back at me in the mirror? What happened? How in the world does she accept this new set of circumstances, move forward, and truly LIVE, regardless of what she can or cannot DO?
“Truly LIVE reguardless of what she can or cannot DO”
I was raised to be an independent woman and I always knew that there would be a season in my life where I would stay at home with my children when they were young. Well, that started earlier than my husband or I anticipated because I chose to stay at home within months after marrying my sweetheart. It’s not that I didn’t love being in the childcare and education field, but I LOVED being married and the hope of soon being a stay-at-home Mommy consumed my every waking moment. My husband and I were ambitious. We both wanted to have the freedom and flexibility to live and create a life that gave us room to breathe and that meant in our eyes, working from home. I helped him run every single start up from home over a three year period, while he continued to hold down a 10-14 hour a day job, Monday through Friday. I had my own business for a short time before it finally happened…our third year of marriage, we were pregnant with our first child. I continued to work side by side with my hubby encouraging him in all his creative and business endeavors. For the next 5 years we went through so much financially, spiritually, and emotionally as our family steadily grew to become what it is today, the 5 Wheelers. So there we were in our 8th year of marriage with three beautiful young boys and in the beginnings of another new entrepreneurial adventure side by side, both allowing our gifts to flow. Mine in writing and his in visual arts. Then, just as this perfect picture was finally coming together, the picture started to crack. Over the next year a steady decline in my health, ultimately leading to complete physical disability, landed me on the operating table with the best Tarlov Cyst Surgeon, having reconstructive surgery on all 10 bilateral sacral nerve root cysts and an eroded spine. Everything in our life changed but I chose to hang on to the one thing I still had which was hope. This hope I clung to with all of my being, was not a feeling or an ideal, it was my Everything, my Jesus.
The recovery from Tarlov Cyst surgery is not something someone can concretely prepare you for at this time in history. There are very few surgeons who operate on these nasty little boogers and the best guess the experts could give us was that recovery generally takes between 6 months to 2 years. How much mobility someone can regain during those first two years is entirely individualized. The best possible outcome was probably a 70% improvement from where I was at the time of surgery. I was mostly bed bound and hardly able to walk or sit without assistance. I knew 70% would be amazing compared to the downward spiral I was on. I am now 3.5 years post op and also working my way through a newer diagnosis called, Adhesive Arachnoiditits. For now, for the sake of staying organized, I would like to share my Tarlov Cyst Journey with you. I am not sure how this will look down the road on the blog because my two conditions do overlap one another and there are other factors having an effect on my health as a wholshare the comfort God has given me through my journey… that it may comfort you in your journey as well. (2 Corinthians 1:4)
“I hope that I can share the comfort God has given me…so that it may comfort you”
My hope with starting the Tarlov Cyst Life Blog is to share my experiences with those who are facing the same or similar circumstances. Another reason I really want to start this blog is to give back to the community who has been there for me all over the United States and all over the world. When I became primarily homebound by the combination of these two horrible diseases, I found unexpected blessings in online communities and friendships. I have been blessed to have friends and family close by that have stuck by our family’s side through it all too, despite the challenges this radical reality shift of a change brings. I want to write to honor them and their sacrifices that they have made for me and my family. I want to write to give back to my community and tribe of Adhesive Arachnoiditis, Tarlov Cyst, Chronic Intractable Pain Patients. As I share my own personal journey, experiences, practical tips and resources, I also hope that this will be a place where I can share the comfort God has given me through my journey, so that it may comfort you in your journey as well. (2 Corinthians 1:4)
“You are not alone and you are welcome here”
I hope that you can find comfort in the very simple fact that you are not alone. If you are homebound, you are not alone and you are welcome here. If you have a loved one suffering from a rare disease you do not understand, you are not alone and you are welcome here. If you have chronic or intractable centralized pain, you are not alone and you are welcome here. If you are sad, mad, worried, or even in denial, you are not alone and you are welcome here. If you are just starting your journey, if you are lost in the medical system, if you are not where you want to be in any way, you are not alone and you are welcome here. If you do not want to accept this diagnosis as a death sentence or a final say in your life, you are not alone and you are welcome here. If you need hope and encouragement, you are not alone and you are welcome here. If you want to improve your quality of life and get better, you are not alone and you are welcome here. If all the Doctors are telling you that you have a rare incurable and progressive disease, and that does NOT compute in your brain and that is NOT going to define you or what you can do in your life, believe me…you are not alone and you are welcome here! If you are still breathing I am here to tell you that our mighty God is not done with you and YOU are absolutely welcome here!
No matter where you are on your journey, you are not alone and you are welcome here my friends.
With All My Heart!
Anne V Wheeler