I remember what a blessing it was making this one day when I was feeling up to it! I think it was before my decline at one year post op, during a period that I was able to sit up a couple of hours a day. I just HAD to have this scripture of JOY up in our home to see every day as a reminder!
I am amazed at what a journey this has been. As I continue to read through the updates, I marvel at the joy and resolve the Lord has given me to keep me strong in this longer than anticipated battle. Not a fake it until I make it, but His genuine JOY that is our strength (Neh. 8:10).
As promised, here is my 2 year update. This one was actually one I wrote in the wonderful Facebook support group I am in called, Tarlov Cyst Support for Cysters and Mysters. It is a private group available for Patients and their Families, run by a friend and fellow Cyster of mine. I have found a warm community of support in this group and am grateful to have made many friends there over the years. This 2 year post op update is from August 2017.
“I just wanted to share a little praise report. This has been an emotional couple of weeks but oh so good overall. Me, Dylan and our boys celebrated my 2 year TC Surgervirsary last Monday! I cannot believe it’s been two years! This past year was better than the first year and I am even more excited to see what the next year brings.
As many of you know I have gone from being completely disabled and relying on a wheelchair or walker before surgery, to now being only partially disabled and improving my mobility slowly over these two years. I have had some big challenges but I won’t give up. The DNA protocol and daily green juicing seem to be making a tremendous difference this Summer. I have been able to do a few things this Summer that I had not done in 3 years with the boys!!! I was finally able to go see a Movie at the theater with recliner chairs instead of armrests that fold up in order to lay flat. That is huge for me…I have had to lay flat so much of the past 2 1/2 years…definitely the biggest difference this Summer! I am still following through with a couple more Doctors to rule out or confirm a couple of diagnoses that I and my Docs suspect may he contributing to the nerve damage, long healing, and neurological concerns. Still no sign of MS which is an answered prayer for sure!!! It was a big scare at the end of last year when my Docs suspected that.
As for today, I am especially full of bliss because we are about to have some family and friends over for our son Jordan’s Birthday Party. It’s the first time I have felt good enough to celebrate any Birthday in a loonnngggg time! The past three years of watching our three boys grow up has been pretty emotional but we always find the best in every situation and make as many memories as we can!”
“Always find the best in every situation”
As most of you know from yesterday’s post, I am now actually celebrating my 4 year surgiversary this week. We still have the same hustle and bustle of joy in the air with this week still being one of our son’s birthday! I won’t lie though, this week has been a struggle in a lot of ways unlike it was at my 2 year update. After a rough pain and mobilty week last week, I was faced this week with a sudden onset of severe weakness in my neck, arms and legs. I am working with my amazing Docs to get to the root of this flare and hope to have answers and a plan soon. While that is all happening though, I have been trying to make the most of my bedbound days this week. I refuse to lose the Joy of our son’s birthday. I am beyond grateful for the support of the friends and family that have offered to help in any way they can in order to make sure it all comes together. It is going to be a WONDERFUL celebration!
“His strength made perfect in weakness”
Though this is a more severe week of symptoms, the way the Lord helps me through it, is consistent. In the times (which are almost daily) that I physically and or mentally do not have enough in me for the day’s demands, He continues to speak the same thing into my heart. He reminds me that His grace continues to be sufficient and His stength made perfect in weakness. (2 Cor. 12:9)
“You are never alone”
We are all facing, have recently faced, or are about to face challenges in our lives. Please know that you are never alone. Please know that nothing is too big, too complicated, too scary, or too insignificant to our great God. If it matters to you, it matters to Him. If it is uncomfortable for you, He wants to comfort you. He never leaves you, He never forsakes you. His Grace is truly sufficient and His Joy is truly our strength!
Just really to the point of contacting a Tarlov cyst place ?? I am 54 and I have Christ by my side ! But it’s getting worse and worse going from lying to standing , and oh the pain from sitting to standing ! Steps are almost impossible? Can’t bend and so on ! But my doctor says it’s disk disease but never mentions the Tarlov cyst growing on my last disk ?? Please tell me who to contact ? If possible.
Hi Angela, I am so sorry you are having to deal with this horrible disease too. I understand the struggle of most Doctors not recognizing this rare disease. It’s not your fault and honestly it isn’t theirs either. The Rare Disease community as a whole really struggles with diagnosis, treatment and cure. I am definitely not a Doctor so I am not going to try and give you medical advice but I will answer your questions based on my experience. 💜
I think it is very important to have your images reviewed by a Tarlov Cyst Surgeon. They will he able to determine if your TCs are symptomatic and if you would be a good candidate for surgery. Dr. Frank Feigenbaum is who did my surgery. He is in Dallas, TX. There are a couple more surgerons that have been vetted by the Tarlov Cyst Foundation and come highly recommended. Just know that the surgeons will not provide you with non surgical options to manage the TCs. They are surgeons so their whole practice is surgery and their whole objective is determining if you are a surgical candidate. A very important component of many people’s journey with TC but not everyone chooses surgery.
I also believe that support is an important component to the Tarlov Cyst healing journey. I highly encourage you to contact the Tarlov Cyst Foundation if you need help advocating for yourself in the medical community. I also highly recommend joining one of the free Tarlov Cyst Groups on Facebook. Maybe try joining a few and see which one you feel the most encouraged in, then feel free to leave the ones where you don’t. The one I have been active in the past 5 years is called Tarlov Cysters and Mysters. The Admins care very much about having a safe and informative community. Of course, you need to find the one that works best for you but that’s been my personal experience so far.
I am so glad you are digging deeper and trying to find answers to what is going on in your health. I know you said Jesus is your anchor. I totally get it, He is mine too. With Him you will get through this. He will make all things work together! You are not alone! 💜