Hi Friends,
I am so grateful to be here writing this 4 year update. I am not where I expected to be in some ways and in others ways I could not ask for things to be better! At the time I published my 1 year update, here in the blog, I was actually preparing to share years 1-4 all in one week. And…here we are 3 months later finally wrapping it up! Much to my surprise, I ended up in the most severe health setback yet on my journey, right when I was writing post op 1-3 at the end of July. Needless to say, things got a little delayed. I honeslty don’t see how it was related to Tarlov Cysts at this point but it all overlaps with the other health conditions I am facing. It has been one big journey so it is all part of my story
Huge Victory!
Friends I cannot tell you how excited and thrilled I was to get to share my 4 year post op update with you…until it actually came. 2019 was marked with some pretty incredible milestones. We started being able to go to church together as a family many Sundays for about half the year. Our two oldest boys got baptized too. Physically, I did not have one single fall all year. Huge victory! My pain levels, vision, muscle spasms and cognitive function have all steadily improved as well! Our family life has been flourishing in so many ways as we continue to find our new normal and make our family work. I have been healing emotionally which has allowed me the mental space to start dreaming big dreams and making goals again. I even got to a place where I could go back to physical therapy – which is HUGE! Everything was slowly and steadily improving until late Summer when the little signs of a big flare started popping up. Don’t get me wrong, I have been on this rare disease ride long enough to know that chronic illness has it’s ups and downs. Even knowing that, it can still be very challenging when the lows come so hard and so fast. After four months, the dust has settled and I feel I can finally begin to wrap my head around it and share.
Strong Foundation of Support
Just days before my 4 year Tarlov Cyst surgiversary, I got the BEST news! I found out one of the Admins from my Tarlov Cyst group (Tarlov Cyst Support for Cysters and Mysters) was going to be coming through the Dallas area with her family. I have been so blessed by the online community one of our Cysters founded soon after I had my surgery. When I first had surgery, I figured in 6 months I would be back to living and all this TC stuff would be just a little blip in my timeline. I had NO idea how being open to the community of this worldwide online group, would create a strong foundation of support for me in the hard years that followed my TC surgery. God appointed my being involved in their group at the exact perfect time. I remember the hesitation I felt, getting involved in the online group at first. I was working so hard to get back to my women’s group at church, homeschooling the kiddos and being mobile in general to go on with my normal pre-TC life. I was nervous about getting involved in a group that I thought I wouldn’t be in very long. Very quickly, I came to realize God had planted me there for a purpose. I began giving my time to the group in service to the Lord. I began praying for the amazing Cysters and Mysters of mine. I began being connected with people by mutual friends to other women who were suffering this rare disease as well! I kid you not, everytime I have been in a place where I am questioning it all, it is as if God just drops another appointed friendship in my lap through these rare circumstances. So to say I was excited about the possibility of finally meeting my third Tarlov Cyster in person, is an understatement.
Planted for a Purpose
This particular Cyster has been a light and inspiration for me on my journey and this was a very special opportunity. I have always hoped to become more of an active advocate for Tarlov Cyst Disease once I got better. I still hope that as I continue to gain mobility I will be able to physically go and visit my Cysters when they come to Dallas. Thank you Jesus that some of my amazing Cysters are well enough to have been able to come see me, when they come to town for treatment!!!
This photo holds a very special place in my heart. My friend, Sister in Christ and Cyster of the Tarlov (haha!) and I, had a wonderful visit that day. It was such an honor and blessing to meet her and her husband and introduce them to my family as well. On a bit of a side note, being that this was truly a rare occasion I decided to take the moment and honor of all my Tarlov Cysters. The set of earrings, necklace, 2 bracelets and even my shirt that I am wearing, are all gifts I have recieved from different Cysters I have connected with over the years. I also took the opportunity to say a special prayer for all my Cysters and Mysters as I was waiting for my sweet friend’s arrival. I remember feeling overwhelm, joy and gratitude just being able to finally see her face to face and hug her neck! One of the highlights of my year.
Like I mentioned before, I was in a bit of a flare that day and that is why she offered to come in the first place. What happened in the following hours was completely unexpected though from what a normal flare is for me. A few hours after her and her husband left I got sick to my stomach after dinner. No fever, just extreme nausea and dizziness. Extreme dizziness is one of the symptoms I have struggled with due to CSF pressure changes. It took me by surprise because it has been much better managed this year. Then, starting from my feet all the way up to my head, I grew increasingly weak and numb. I spent a day unable to move my limbs at all. Then, for two or three days I was just barely able to move my limbs or hold my head upright. It was scary. If this almost exact same thing had not JUST happened 10 month earlier, I would have gone to the ER. I know that drill though. If I’m not bleeding or having trouble breathing I do not belong in an ER. They are only there for life threatening emergencies, not chronic illness flare ups. So I ran my usual routine of using my breakthrough and rescue meds/treatments to get me through the night. Then the following day I called all my Doctors. Now, here I am 4 months later catching my breath from the 2+ months straight of tests. Praise God though, we got through it and found some great help along the way.
Not the miracle I was expecting at 4 years post op but still a miracle.
My symptoms are being managed really well right now! I can sit more now than I have in almost 5 years. I can finally be out more than once or twice a month for a short family or school socializing activity because I can finally tolerate sitting in a wheelchair for a few hours! Such a miracle! Not the miracle I was expecting at 4 years post op but still a miracle. Sitting up is literally a miracle for me! I am focusing now on my goals involving mobility. No matter what that takes. I am saving up for a mobile folding electric wheelchair so I can have some independence again! That would be amazing. I love that my sweet husband rolls my wheelchair but I am too independent to let him do that forever, lol!
Some Exciting News…
Like I said in the beginning, I am not where I expected to be in some ways. In other ways though, things are better than I could have ever imagined! I have some exciting news! As an answer to many prayers, I also started working on a business this Summer called, Rare Love. I plan to launch it in time for Black Friday with the goal of bringing hope, joy and resources to the Rare Disease Community as a whole! It is a Business with a purpose. 10% of profits each and every month will be donated to a specific Rare Disease Foundation or cause. My amazing Artist of a husband, Dylan Wheeler, has collaborated with me in creating our first series of Zebra designs. The company I am partnering with to fulfill my customer’s orders will be making each item custom in their warehouse and delivering straight to my customer’s door. It is the company my husband used when he sold shirts in the past and we trust their partnership in bringing this dream into reality! It is such a blessing to be able to find a way to work form home doing all the things I have grown passionate about over the years.
Move Forward and Dream New Dreams
I love that I am getting to blog too! I love to write, draw, sing…create anything! I am so grateful. I have felt more like myself in this past year than I have in the past 5! I didn’t realize I was in survival mode for so long. I didn’t realize I wasn’t going to pick up where I left off when I became ill. It took a while for me to accept that where I was 5 years ago doesn’t exist any longer and it was time to move forward and dream new dreams.
…Begin a New Chapter or Even a New Book!
I hope that wherever the Lord leads our family in the next 5 years, I can help to encourage others to look to their future too. To begin a new chapter or even a new book! I cannot wait to see where I am when I come back next year for my 5 year update.
Until then, God Bless and take care!
Remember that you are not alone and you are welcome here.
Anne