I have recently started on a new journey in my life, and have asked you, as friends and family, to come alongside me. As you have already given generously of your love, support, prayers, encouragement, and even your dollars, I really wanted to give back and truly share this experience with you. I know that many of you do not know the details of what Richard and I have been going through, and so I just wanted to take the time and fill you in on my story. But first of all, I want to say thank you; thank you all for being overwhelmingly kind. Kindness is something that is often hard to find in this world, and I have been so blessed to have a wonderful family of people surrounding me that shower Rich and I with kindness always — we are so grateful!
I apologize in advance for the length of this first entry!! There is a lot to catch up on — but this is my first blog entry ever, and I am excited to share with you : )
And here we go — My trouble with my back started all the way back when I was in high school, more years ago than I think, when I actually stop to count! Before then, I was playing sports and had been active my whole life – living on a busy farm tends to make you that way! I was never limited by my physical abilities and worked on the farm and played sports without any issues. However, while playing field hockey my sophomore year of high school, I experienced what I thought was the worst torn muscle of my life in my lower back, and ended up sitting out for a good part of that season. Well, that “torn muscle” never healed, but after high school, I didn’t have time to play sports, so it didn’t bother me nearly as much as it had before.
Fast forward several years, and I began to experience extreme back pain with any vigorous physical activity, especially anything that involved bending or stretching my back. I also began to have frequent, and often severe, headaches. During my college days, this was more of an annoyance than anything, but I still was not overly concerned.
During my last of college, the pain increased significantly to the point where I was not able to sit through my 60 minute Physics lecture, and at the end of church services on Sundays, my sister or brother automatically reached out a hand to help me stand up to leave. The pain in my lower back was often paralyzing, and made moving my legs almost impossible! If I did try any sort of activity, my legs would now give out completely, and I would be in severe pain for several hours, confined to the living room floor where I could lay flat, but often not get back up again. At this time, my parents and I began to realize that this was not a passing issue, was not a torn muscle, and was not getting any better. During an MRI to try to figure out what was wrong, the radiologist noticed a “tiny” cyst in my lumbo-sacral region, but noted that it was hardly worth even speaking about. At that time, it was indeed tiny, but after consulting with Dr. Kathuria at Johns Hopkins, we really came to understand that location is everything! The cyst is sitting pretty close to a major nerve in my lower back, which was the reason my legs were becoming affected. Dr. Kathuria first tried a nerve block to make sure that the cyst was indeed causing the issues! IT WAS! At that time, I was still waitressing, and on my feet for up to 10 hours a day. I noticed an immediate difference, and was disappointed when the nerve block wore off. After seeing Dr. Kathuria again, he suggested a procedure that is called aspiration. In a nutshell, the cyst is drained of fluid, and then glued to itself, in essence sealing it off, and encouraging scar tissue to form around it so it will not “open” again. I have had this procedure done twice — both times I did experience relief, but not to the point where it was lasting relief. And in fact, it was after these procedures that we found out how much that cyst has a hand in my headaches! After each procedure, I had a headache that lasted for over a week! Dr. Kathuria explained that the location of my cyst is such that it is attached to the tissue around my spinal cord, and thus open to being filled with Cerebro-Spinal Fluid. Thus, the cyst affects the level of CSF in my system, and I have become extremely sensitive to extreme activity, dehydration, or weather fronts/changes in barometric pressure, all of which change the level of CSF that I have circulating in my body.
Phew! I think that might bring us pretty much up to speed! My last aspiration procedure was several months prior to our wedding — I was hoping and praying that that would be the final fix! However, in the past several months, I have noticed that my symptoms are actually becoming much, much worse. I now cannot life anything over 10 pounds, cannot do anything strenuous – even vacuuming our apartment will land me in bed for the rest of the day. I have not been able to exercise as much as I would like, and as a result have become much more ……fluffy…..than I would like. The cyst causes many symptoms, but right now, one of the worst things is the pain and numbness in my legs. I have had to quit working in Home Care as a nursing assistant because I am not able to do anything to actually care for the patients without being in extreme pain! However, even sitting at my desk all day will now often leave me in tears when I get home. My left leg is constantly numb and tingling from my hip down to my heel, and rarely feels normal anymore. Recently my legs also have a dull ache constantly, which becomes worse when I am cold, or when I have done too much that day. The headaches have become dehabilitating — I often vomit, and cannot eat, and will have to leave work early, which becomes very disruptive when the headaches occur sometimes as often as three times a week. However, I believe the worst of it all is simply being limited. I was not able to help my parents move to their new house, because even standing at the kitchen table trying to cut cabinet liners left me sore and unable to put weight on my left leg. I am not able to play sports with my husband, who is amazing at everything athletic and wants to share that with me! I have to say no when people invite me to do anything remotely active. And worst of all, I have to ask for help with simple tasks like carrying groceries, or taking out the trash! For someone who is independent and TERRIBLE at asking for help, this is a trial in and of itself : )
After all of this, and realizing that life is too short to live the rest of it this way, Rich and I decided that it was time for me to pursue other treatment options. I am only 26 years old, and have much more to give back to this world! We have dreams of starting a family, and being active and healthy parents! I am motivated to live a great big life, achieve goals and work for dreams, and I refuse to be limited by pain and circumstances that are within my grasp to change! I want more, and I am reaching out for more. So join me as I start this journey — I hope that you will share your thoughts and ask questions, and I am happy share this part of my life story with you.
As an update, I had a new MRI done last night, and in looking at the films, the cyst has about tripled in size from last year, and is pressing on many more tissues and nerves, and filling with much more fluid than before. Which is encouraging, in a way, because I can see with my own eyes the reason that I am in pain, and I know that I am legitimately in need of help. I can have the radiologist’s official report tomorrow, and will then call the doctor whom I have been referred to in Philadelpia — I am hoping to set up a surgical consult to have the cyst removed, as other procedures are not an option at this advanced stage. So that is the reason for my fundraising push! MRIs are costly tests, and the surgery itself is going be to very expensive as well. I thank the Lord that we have jobs and insurance, but even still, we are not financially in a position to afford the surgery at this point. We pray daily for God’s provision, and I truly feel that He has more in store for me than living like I am now, and so , He will provide a way!
The title of my blog is “Roadblocks and Blessings” because I have never planned for this to be a part of my life — yet without it, I would never have learned to give up control to the One who ultimately has it all in His hands. I would never have learned to rely on my amazing husband for things that I felt I should be able to do on my own. I would never have realized that we cannot go through this life alone, and that sharing with those you love brings joy in the times when you absolutely need it. I would never have opened myself up to love and compassion from friends and family, and certainly would have never learned that it is ok to ask for help. I am becoming a better person through pain and struggles, and hope that, with physical healing as well, I can be on track to being a better Erika for me, my husband, my family, my Lord, and this big old world that I call home.
Thanks for reading. More soon — God Bless.
For more information about Tarlov cysts, visit the great people over at the Tarlov Cyst Foundation! http://www.tarlovcystfoundation.org/home0.aspx
Also, if you feel so led, my fundraising site is below. Thank you all so much for everything!