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Rare Disease Day 2022: A Timeline of My Journey

Today is World Rare Disease Day 2022. As someone who has been battling 3 Rare Diseases since 2014, I am 1 in 10. Rare Diseases are not rare. Did you know that on average it takes 7 years to be properly diagnosed. That is 7 years of progression and innumerable struggles. Did you also know that 2/3 of our world’s Rare Disease patients are children? If you want to read about a true Hero, check out the blog I wrote with my friend Alison about her son Carter, here. My hope in writing this post today, is to bring awareness to Rare Diseases and let others know they are never alone!

I haven’t shared my Rare Disease story in a couple of years. Things are always changing and I am a work in progress for sure. For those who are interested, here’s my Rare Disease story so far:

2014 – The 1st year of our youngest son’s life. In one year, I went from Stay-at-home Mom of three young boys doing ALL the things, to completely physically disabled and in 24/7 severe intractable severe pain. This time of our family’s life marked the beginning of our journey toward finding correct diagnosises and treatments to hopefully get us back to who we were before this nightmare began. All hands were on deck from family, friends and Doctors as they supported us through the beginning of an unknown journey ahead. Some short term relief was given at times from consitent multiple holsitic treatments and pain management. They were short lived and symptoms progressed to affecting every nerve, organ and bodily system, from my ribs down

2015 – 1st Rare Disease diagnosed and my 10 Sacral Tarlov Cysts were surgically treated. It was a miracle! That story in and of itself about how God led us to THE world renowned Tarlov Cyst Surgeon, is a true miracle. People literally come from all over the world to see him and his Nurse just happened to be my Chiropractor’s Cousin and his main office just happened to be 30 minutes from our home. We thought this was it! Sure we had a long road ahead of us with recovery being a 1-2 year journey, but this was it! We are forever grateful for the support our church, family and friends gave us during this time! We could not have gotten through those first two years without them! I couldn’t lift babies in and out of cribs, change a diaper, bathe the littles or even myself without asistance, grocery shop, cook, etc. They were literally my hands and feet. Again, Rare Disease. So for my particular situation that equated to very little medical support or resources. We had to figure it out as we went.

2016 – It became apparent that the surgery was only one piece of the puzzle. I began struggling with new symptoms and things began to progress again, quickly and severely. My improvements were very short lived. I began having trouble with my vision by the end of the year. More Doctors, more tests, more treatments.

2017 – This was our most difficult year. So many Doctors. So many tests. So much pain. So much discouragement. Simultaneously, new doors were beginning to open and God was leading us to where we needed to be next. We were just clueless as to where that was at the time. Blind faith and in the midst of it all, peace that passed all understanding.

2018 – Valentine’s Day week we received the news of my 2nd Rare Disease Diagnosis. An inflammatory disease that had progressed to affecting my entire Central Nervous System called, Adhesive Arachnoiditis. Since that time, it has now been removed from the NORD database (National Organization of Rare Diseases), but is still considered rarely diagnosed. My case of both Lumbar and Cervical Adhesive Arachnoiditis was considered to be in severe late Catestrophic stages. It had been there all along from my first images, but was missed. I was told that if I didn’t make MAJOR changes to my lifestyle and medical treatment, the future looked very bleak. It scared me. I cried for two solid weeks. My Doctors insisted that I not give up hope though! If I could begin the recommendations given to me, I could stop Disease progression and maybe even see some healing. So I dug my heels in and 4 years ago I made some big decisions as I forged ahead on my healing journey! I began the Wahls Protocol for my diet, the Tennant Protocol for guidance on meds, and I did a lot of genetic and nutritional testing to help guide the supplements my body desperately needed to help feed my mitochondria and produce healthier cells. It was not going to be a quick fix. I was told the Wahls Protocol alone could take up to 7 years to see a major turn around. Half my Doctors were on board with the treatment path I wanted to take, half weren’t. There were risks involved with the meds I needed. From all my research, I knew the risks of not taking them were even greater! God pruned my medical Team and made them even stronger! I decided that for the rest of my life I would do everything I can to give my children and Husband, the best version of me possible! By the end of 2018 my vision was improving, the Neuroinflammation was improving, the pain was slowly becoming better managed, hope was abounding! I started being able to attend some Birthdays and family events I had missed for a few years. I was finally able to host or attend the occasional play date for my boys and their friends from school. Such an exciting season!

2019 – Continued slow improvement. Pushing boundaries and adding more physical therapy back into my routine. That Summer I had the idea for what became Rare Love. That began my journey of building some self confidence back. I desperately wanted to figure out how to go forward even with physical limitations. Under the advisement of my Doctors, we also began the process of genetic testing for a third possible underlying rare disease.

2020 – Amazing news! January MRI imaging showed massive physical improvement to the adhesions surrounding my nerves that had been affected by Adhesive Arachnoiditis! We thought this meant remission. But not exactly. The damage was still there. I need to keep doing all the things to keep symptoms manageable. Still amazing though! My daily fight became solidified in how imperative it is to be consistent and not give up on all the little things that add up to big things. If I pull back, symptoms return. But on the flip side, when I keep doing all the things – I keep improving! I was so thankful to be at this place of my pain being well managed most days as the unknown hit all of us and the Pandemic began in March. I began homeschooling all three boys and that became a HUGE blessing of God redeeming the years lost to these crazy Rare Diseases. I also found out about my 3rd Rare Disease Diagnosis of Ehlers Danlos Syndrome in 2020. This genetic connective tissue disease began to help us put all the pieces together. It was an underlying factor to my body developing both Adehsive Arachnoiditis and symptomatic Tarlov Cysts. Soon after the Pandemic started, I chose to close down Rare Love. It became imperative for me to streamline my energy and focus towards navigating the challenges of the Pandemic and the extra demands that put on my family and health.

2021 – What a year! So much healing and growth in our family!!! The daily habits I had developed from my healing journey became second nature and were bearing much fruit of improvement. I was able to build on top of the momentum those improvements gave me. We put the kids back into their school they love, I built another online business, volunteered to teach online Bible Study for our church, took a family vacation for the first time since 2014, had friends and family visit from out of town…and so much more!

2022 – It was a rough start to the year with having Covid for the second time during this Pandemic, and another lung infection immediately afterwards. It took a toll on my nerves and inflammation levels so it’s going to take a while to get back to where I was by the end of 2021. I am confident in the Lord’s provisions though and I will continue to heal!

To everyone battling a Rare Disease or walking alongside a loved one who is, please know that you are not alone and you are always welcome here.

Take care and tall to you soon!

– Anne V Wheeler

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Finding the New Normal

I haven’t done an update in a while so here it goes.

I am finding a new normal.

Can I just be straight with you? I used to despise hearing those words because I thought it meant I had to give up living. I had to resign to the fact that  my best days were behind me. I thought it meant that I would always have to settle for second best. 🙄

I wonder how many people are struggling with the same feelings and thoughts right now that I was when I lost my health in 2014? I wonder how many people are waiting until the current storm they are in is over, before they start living again?

If that is you, I understand. I have been that woman. I was in so much pain and living under so much pressure every second of every day, for so many years. Not just any years, some of the BEST years I had spent my whole life looking forward to. The years of being a young Mom of 3 amazing little boys. No one could have ever predicted that this Mom of three would become completely physically disabled from 3 rare diseases shortly after her third son was born. No one.

After years of being in severe 24/7 pain, mostly bed bound, and desperately searching for answers, the pieces finally began to come together. Finding those puzzle pieces gave me the heart space to finally grieve what I had lost. That grieving process was a long time coming. On the other side of that grief, Jesus started to help me see possibilities again. He began to put the thought into my heart that it was possible to build a life even better than the one I lost. That He could help me write a new story. My hope to be free from the storm began to shift into having hope for what God could build even IN the midst of storm.

God can make beauty from ANY ashes. He can help us triumph IN the trial. We don’t have to wait to LIVE! The struggles and challenges can shape and remake our lives if we surrender to the One who can make ALL things possible!

I am not living in a fantasy. I still live with these 3 rare illnesses everyday, I know storms and trials are hard. Near impossible at times. Sometimes they even feel like they won’t ever end. I am here to remind you that nothing lasts forever. This hard season you are in will not always look the same as it does right now. God promises that His HOPE will never make us ashamed. That means that when we lean into the love of Christ and the promises of God, we can stand rest assured in hope. Real hope. Hope that doesn’t require any of my circumstances around me to change before I embrace it.

Paul may have been given a thorn, I was given a storm. It’s all the same. His grace is sufficient no matter the challenge. Now please excuse me while I wax up my surf board and keep learning how to ride the waves of this “new normal”. 😎 It’s a wild ride, I would love for you to join me!

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Healing Journey Update!

For the first time in my 7 year healing journey…we did a thing.

We went on a Family Vacation!

In 2015 I could not longer safely travel in a car for more than 30 minutes. Or on the rare occasion, an hour max.

Why?

My body was in the fight of it’s life battling Adhesive Arachnoiditis, Ehlers Danlos Syndrome and, Tarlov Cyst Disease.

Are those diagnosises gone? Nah. I’m on a healing journey that may never end…and that’s okay. I am praising God because today, I am no longer where I was a month, a year or even 3 years ago.

Let the world put whatever labels it wants to put on me. God is going to keep showing me and my family what He can do through me, despite them!

Something huge came out of this Vacation you guys. I feel like a different person and in all honesty I am still in shell shock.

The ENTIRE Vacation was planned around the worse case scenario. Because that’s been our life for almost 7 years. We felt so super blessed to know that I had all the bracing I needed to make the 2 hour ride, a couch on the dock if I was confined to laying down, a bed that was chosen for people who have back issues…the list goes on. Then for the boys, the house came with ALL the toys to make it super FUN for them too. We knew it would be a perfect place to chill at the lake no matter what surprises came our way.

That first day and night came and went and I wasn’t struggling like normal. Then the next morning I woke up hurting, but in different ways than normal, so I still took all my meds and supplements. I felt really good after they all kicked in. Things just got better from there. By the end of the trip I was trying to figure out WHY everything was going so well. Then I heard the Lord whisper in my heart that it was a gift and to just receive it. OK!

So I’m done trying to figure out WHY and I am just rolling with it.

I feel like I am free from the bondage I was in for almost 7 years! I left that Lakehouse feeling like a completely different person than the one that came into it. I cannot explain it. God gets all the glory.

I was able to do something I have NEVER done in my life…Kayak! AND I did it with my amazing 3 boys!!! To think, I couldn’t even push myself in my own wheelchair 2 years ago because of how severe the Adhesions were in my neck…I am in SHOCK, y’all!!! (Did I mention God gets all the glory?!?!)

Since we have been home, the increased mobility is continuing. I have broken through previous roadblocks and still haven’t had a “put me in bed for several days” major flare up. It is truly a miracle. I am entering a season of not really knowing where God is leading me but I am so excited to see what is to come!

For now, I will continue to take this healing journey one day at a time. So thankful! Just wanted to share this with everyone who has been on this journey with us. I am so grateful for each and every one of you!!! Love you guys!

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Meet my Hero, Carter

You guys let me just start off by saying that this blog post has been a long time coming. I am so grateful for this opportunity to introduce you to one of the coolest kids and families I know!

Carter and his family – 2019

You see, a while after I began fighting my rare disease battle I found out my friend Alison’s son was beginning his own rare battle too. He quickly became an inspiration to my strength. His Mom continues to lovingly share each and every hill and valley on his NUBPL journey. I have never seen a person fight with such joy and perseverance in all my life. Carter truly is the living breathing example of the scripture, “the joy of the Lord is my strength”. I get tears of joy in my eyes simply witnessing how this sweet boy blesses his family and the literally everyone he meets.

“Joy of the Lord is my strength”

I asked Alison if she would mind sharing a little with me about Carter’s journey. She graciously agreed. Alison also connected me to the NUBPL foundation so Rare Love could donate 10% of our sales this month to NUBPL in honor of Carter and EVERY child with this rare disease. We originally began in March but due to Covid-19 I decided to extend it into April. Now please allow me to introduce you to Carter!


Carterman

MEET CARTER, AGE 4

As a baby Carter met all of his developmental milestones, except for walking. By 15 months old, his speech had fully regressed, he was very shaky, and constantly sick. By 18 months, Carter’s family connected with a wonderful physical therapist who advocated for an MRI. His MRI showed cerebellar degeneration, which led to genetic testing. In January 2018, whole exome sequencing (WES) confirmed that Carter has a rare form of Mitochondrial Complex 1 Deficiency caused by mutations in the NUBPL gene.

“Rare form of Mitochondrial Complex 1 – NUBPL”

Since his NUBPL diagnosis, Carter has made steady improvement with three hours of therapy per week. Also diagnosed as immunocompromised, he receives IgG infusions every 7 days to keep his immune system
Intact. In August 2019, he was diagnosed with gastroparesis, a complication that plagues many people with mitochondrial disorders that affects the stomach muscles and prevents proper stomach emptying. Since that time Carter has undergone 6 surgical procedures, he is now getting all of his nutrition through a tube that bypasses his stomach. Carter also no longer eats or drinks regularly. Since June, Carter has been hospitalized 18 times. Although his disease is progressing, he continues to have a happy and positive outlook on life. Now he is working to rebuild his strength and his skills, so he can resume walking in his walker.

Although his Disease is Progressing, he continues to have a Happy and Positive Outlook

In the words of his mother, Alison Large, “Carter is a happy, kind, and loving boy. He is ALL boy, too! He loves wrestling his big sister, anything with wheels, and dinosaurs. At therapy he never gives up and often exceeds expectations. He makes friends with everyone he meets with his big smile; he is joy personified. Carter is a hero. He is my hero!”

“He is My Hero!”

See? Now you can understand just a tiny bit of why this amazing boy is my hero too. Please help us help Carter and all the children who are fighting for treatment of this rare disease. We love you Carter! We love you Alison! We love the whole entire Large family! Thank you for sharing some of your journey with us. Blessings always. I will include the link to the NUBPL Foundation below so anyone can donate anytime now or in the future.

DONATE: http://www.nubpl.org

Superheroes for Life!
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Best News of 2019!

Well 2019, you were a year of MAJOR change! I am very excited to share a wonderful praise report. Seems 2019 has been a year filled with much redemption for the hard years we have been fighting through Mommy having major medical issues. I am filled with happy tears just writing this! AND to top it all off…4 days ago we got the BEST news yet!!!

Before I share the news, I need to take it back a minute and reflect where we have been to get us to this point.

February 13th, 2018 we got a call that changed our lives. I found out from the most experienced Adhesive Arachnoiditis MD, that I was in severe late stages of Adhesive Arachnoiditis in BOTH my lumbar and cervical spine. (Remember this was AFTER I had been through Tarlov Cyst Disease and surgery for the previous 3 years.) I was told that I had signs of CSF seepage and leakage which he was not sure as to weather it was present or past from the imaging. Dylan and I began to prepare for the years ahead of treatments that it would take to hopefully hault the progression of this Progressive Neurodegenerative Disease. A lot of questions were answered as to why I had declined so much since TC surgery, as we began to understand this new diagnosis. Another Rare Disease.

Prior to beginning treatment for Adhesive Arachnoiditis I could not travel more than 30 minutes laying down in the van. I could not sit upright for more than a few minutes without severe dizziness, nausea, blurry or double vision, and most of all severe pain. The pain was unrelenting 24/7 despite ALL the holistic and medical measures I had taken the past 3 years leading to that point! The day we got that call from the Adheisve Arachnoiditis Doctor was scary but it was also a relief because we knew the Lord was leading us in a path toward the right treatment! My HOPE and prayer was to HEAL even though this is an incurable Neurodegenerative Disease.

I have to remember where I was almost two years ago because so much has improved since then. The tears of pain have turned to tears of joy! 2018 was the first time we were able to do much of anything since Tarlov Cyst Disease and Adhesive Arachnoiditis started in 2014. I remember 2018 was the first year we were able to attend a Birthday Party ALL together for one of the boy’s friends from school! That was the first Summer we did not have to hire extra childcare. We were able to manage with Dylan’s FMLA days and my Mom helping…and I was actually able to care for the boys 2 or 3 days a week! HUGE victory! I started being able to stand long enough to prepare simple meals once a week. We started visiting church together again as a family!

Then came 2019! I took even more steps toward healing. As a family we took kore steps toward healing. Aden and Jordan got Baptized. Dylan was able to actually have enough time to take some days off from work in order to help care for his Dad who overcame liver cancer this year! Another HUGE blessing this year!!! The pain started to become better controlled by Summer this year. Then I had a huge setback and lost function in my neck, arms and legs for a few days and it slowly began to return over two weeks. Function has not been exactly the same ever since. BUT there have been many other improvements. I had the opportunity to have a DNA customized supplement protocol designed for me by my amazing Chiropractor Dr. Jill Plentl – which was a HUGE turning point in October! I also finally took the last step in my nutritional changes and started the third level of the Wahls Protocol which is nutritional Ketosis. Then by the grace of God I was finally able to start my blog and my online shop – Rare Love! Then there was this amazing news, the one I was completely shocked by 4 days ago…

OK so here it is. 4 days ago I received a letter from my Adhesive Arachnoiditis specialist updating me on the results of my most recent Lumbar MRIs. BEST NEWS EVER! He said by most standards what I sent him for my Lumbar MRI would be considered by most Radiologists as NORMAL!!!! What??? He only found 1 area of Adheisions in my L4 lumbar spine!!!!!! He said he wants to know what else I am doing in addition to his Protocol because whatever it is – IT IS WORKING and needs to be shared!!! He wants to see another copy of my previous MRIs again to compare! I am also waiting to hear back about my Cervical MRIs but I am now anticipating a praise report for those as well!!!

I was in tears of JOY all day!!! Jesus gets ALL the GLORY! This disease is supposed to be incurable! I honestly do not believe this would have been possible without HIM! I also found out this year that I have Ehlers Danlos Syndrome which produces faulty connective tissue. NOW my Doctors are beginning to see that the EDS is probably what was behind all of these different issues developing. EVEN more of a miracle that I am experiencing healing despite this genetic syndrome!!!!! Eeekkkk! Just so amazed!!! I have a whole journey ahead of this new EDS diagnosis and I am carrying SO much hope into it for God to do BIG things!!!

So I am here to say to all my friends and family today, do not give up HOPE! I spent 5 years in a very dark place and wondering if and or when the light at the end of the tunnel would come. It has. It will for you too! Also, give yourself permission to let go and accept help. There is strength in vulnerability. We were made to help eachother. We were made to need family, community and friends. We were desinged to need Jesus. I don’t say that in a political or religious way. Nor do I judge anyone who believes differently than me. I just know that no thing and no one ever healed my heart and soul like Jesus has. He and I have been on a very long journey together. I am far from perfect but I am complete in knowing I am so loved! I hope and pray that ALL He has brought me through in my lifetime can be used to shine HIS light through my life. I hope that whatever lies ahead with my health, the Lord will continue to open doors for me to serve in any capacity possible.

So goodbye 2019. Thank you for all of it, the good and bad. Welcome 2020. 🙌

Remember that you are not alone and you are welcome here!

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Tarlov Cyst Update – 4 Years Post Op

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!!!

Such a blessing to have a visit from one of my Tarlov Cysters, just days before our 4 year Surgiversary! I was wearing several gifts I had recieved from different Cysters over the years, so they could be with us in heart.

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

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3 Years Since My Tarlov Cyst Surgery

March 2018 I chopped my hair off. My husband says he can always tell when I am going through a big change on the inside because I do something drastic to the outside of myself too! This was definitely true here once I had accepted my Adhesive Arachnoiditis diagnosis from just a month earlier.

So it as been a little bit longer than I had intended for it to be, since my last blog was pulished. It is time to continue to share my yearly surgiversary updates and now here we are at year 3. I began compiling these updates the last week of July during one of my worst flare ups yet. Full disclosure, I am still not over it and in the process of seeing more specialists and looking for help to become more mobile and independant. There has been a lot going on, so I appreciate all your patience as I had to take a step back when the cognitive symptoms became rough in the days following my last published blog. I took that plunge and hit that publish button all while I was confined to my bed for a solid week. Praise Jesus I had some great days where I was able to focus on my writing at all! I do everything I can to keep my mind busy during those types of flares when they come. I have not learned however, how to write about them while I am IN them. So, I wrote about other things. My Surgiversary updates felt like the best place to start if I was going to allow this blog to be what it is intended to be. A place where everyone is welcome. A place where people like me and you can share our experiences and stories, for those that come after us.

The following 3 year post op update is slightly modified from it’s original text due to the fact that it was published in my Tarlov Cyst support group.

“Today is my 3 year surgiversary!!!

I am pretty sure many of you may not know my story. I would like to share it so HOPEFULLY it can serve as an encourgament to others who need to hear it.

4 years ago my body began to decline pretty severely. Our boys were 4 years, 2 years, and 9 month old right around the time things started to affect my daily mobility. It was tough to say the least. By the end of 2014 I needed help every single day just to care for myself and the kiddos. About this time something called a Tarlov Cyst turned up on my lumbar MRI, just below, in my sacrum. Since there were a couple very mild disc bulges in my lumbar, and some division between my Doctors concerning the root cause of my issues, we treated the buldges first. I followed all the standard protocol for conservative treatments of the 2 very small lumbar buldges. 3 months and 3 rounds of ESIs later, the beginning of 2015 left me unable to be upright in any position for any length of time. The upright headaches also became horrible.

“An Unexpected GOD Encounter”

Fast forward to March 2015, insert an unexpected GOD encounter with the Doctor who instantly became my biggest advocate these past 4 years. My Chiropractor, Dr. Jill Plentl. She listened for over an hour and at the very next visit she was so excited she could hardly stand it. She said she had some exciting news. After research and prayer, she felt she might have stumbled onto the root cause of my symptoms. She felt I was suffering from symptomatic Tarlov Cysts, and her Cousin just so happened to move here the year prior to be the nurse for the world’s best Tarlov Cyst surgeon, Dr. Feigenbaum. She had already called her cousin, discussed my medical history, and made the referral to Dr. F. I was overwhelmed and excited all at the same time. It was a confirmation of something my PA had been trying to tell me about.

For anyone in the process of scheduling TC surgery, or post op, you know that first phone call to Dr. F is only the beginning of a very long journey. I have been through it all. The long waits, the insurance denials, the not knowing where the money will come from, the Hospital adventure, the insanely unpredictable early stages of recovery, and so on. In many ways, things didn’t go as well for me as they do for a lot of people. There was a lot that did go right though and for that I am grateful! I have learned we cannot compare ourselves because no two Tarov Cyst journeys are the same. Thankfully, one of my most severe TC symptoms went away when I woke up from surgery to treat the 10 bilateral sacral TCs. Even with that gone, it was the upright symptoms and severe leg and foot pain that kept me in bed a lot longer than I ever expected. In this journey I have had helpful Doctors and dismissive Doctors. I have also learned to be my own advocate and grow thick skin. Something wasn’t right about my recovery in particular though and so my husband and I had to continue to find anwers long after surgery. I refuse to give up searching for answers because I am determined to drive again and be able to fully take care of my babies.

“Jesus Has Been My Rock Through This All!”

During the long journey of continuing to seek answers, my Chiropractor helped me get extensive epigenetic DNA testing. As a result, I was put on a very good nutritional protocol that helped me feel so much better. It continues to help me have the physical strength to keep going even when the answers seem so far away. Jesus has been my rock through this all! As well as the friends and family I have been so blessed to have!!!

As time goes on I continue to find more answers. This February I found out I also have Adhesive Arachanoiditis in my lumbar and cervical spine. It was there even before the TC surgery but always went undiagnosed. That has led me down a path of healing that is thankfully bringing more and more of my mobility and life back! I am a HUGE fan now of the Tennant Protocol and the Wahls Protocol. BOTH have not only helped with my AA pain and symptoms but are also helping with my remaining TC pain and symptoms!!!!

“Trust in Him to do the Impossible!”

So here I am 3 years post op. Every week and sometimes even daily I am saying, “Wow! I haven’t done this in 3 or 4 years!” I cry happy tears a lot! I am sad that 4 years went by like that…and now our boys are 4, 6, and 8….but man have we all grown as a family! God has allowed our family to see a night season in life together and walk out our faith and trust in Him to do the impossible! We always choose to seek Him through it all. Perfectly? Absolutely not! Is it always easy? Nope, one if the hardest things we will hopefully ever have to go through. Were there times I wondered if I or my marriage would make it? For sure! Was it worth it? A thousand times yes!!! God has truly given us His peace that passes all understanding through this whole journey.

“Today We Celebrate We Are No Longer Where We Were!!!”

I know there are lots of us here with multiple health issues going on. I am here to encourage you to rest in the grace of God. Breathe and just take it one step at a time. I am so thankful to have found a loving group of Tarlov Cyst Warriors online. My willingness to embrace an online community of friendship and support was a huge step of faith when I became less and less able to get out and about. That support group has turned out to be of the BEST blessings in my life though! I have made so many sweet friends in there! We are all there for eachother and to lift one another up as we make our way on this journey. You are not alone my friends! I hope that you each find the same encouragement and friendship as I have over the years!”

Wow, I still cannot believe that 3 year update was written over a year ago! So much has happened since that point in time. I cannot wait to get to work on this next post for all of you. I cannot wait to share my 4 year surgiversary update. It is very much about acceptance, grace, and the willingness to lay down all our fears in order to embrace new dreams and new adventures!

Thank you for sharing this time with me.

Rememeber, you are not alone and you are welcome here!

With ALL my heart,

Anne

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2 Year Post Op Update

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!

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One Year After Tarlov Cyst Surgery

Sitting was a BIG milestone that improved between 6-9 months post op!

The date is July 31st, 2019. Today is my 4 year surgiversary. Since this is my first year blogging though, I wanted to go back down memory lane and archive my updates here one post amd year at a time today in order to catch up. As I began searching for my one year post op update, I discovered I do not have a true 1 year post op update. I did find an 11 month update though and here it is from my personal Facebook page, June 9th, 2016.

3 years ago I was Mom of 2 wonderfully active boys ages 1 and 3, and pregnant with our youngest. That was the Summer my back went from meh to oh boy this is a problem but I assumed it was pregnancy. I got the help I needed to get through it and went on to have beautiful baby boy #3 that Fall. 2 years ago I was Mom of 3 boys, ages 7 months, 2 1/2 years, and 4. That Summer was the year my back, legs and feet began to affect my mobility in a big way. I had to regretfully rsvp no to all the Summer playgroups, and fun things outside of family commitments. That was the year I let go of my backyard and my joy of gardening. 1 year ago was the Summer I was in limbo waiting for the surgery that we all knew would change not only my life but all our lives. I had a painful horizontal reality. I had to lay down every where I went. In the car to and from Dr’s appts, in the waiting rooms, at my parents and at familys houses, even every meal I ate, or while I had visitors. Anytime I was upright i was in agony. And anytime I sat I could not do it for more than a few seconds to a few minutes. After surgery it took months for me to even bend my neck enough to brush my teeth or make a cup of coffee without pain from the top of my head to the soles of my feet. Next month it will be 1 year. I cannot believe it. Life is so much brighter!!! Going into this I did not want to believe that this nerve reconstructive surgery from the Tarlov Cysts would be a 2 year full recovery. But now, almost 1 year in I am learning to accept God’s timing and be more comfortable with the pace of things.

The Joy of the Lord is Our Strength!

“Today, I am having a bit of respite from the past two or three months that have worn me out. As I sit here in our quiet yard I am filled with joy. Over this past year I have had friends, family, and church bring plants to the house. I don’t think they knew how big this was for me but the Lord did. It sparked that joy in me that I hadn’t been able to do for a year and a half, no almost 2 and a half years. First, I started repotting, potting, and growing plants in the house around December as I began to be able to sit for short periods at a time. Then in March/April I got the kids on board with sprouting seeds. Then still working with pots we transfered and fed and tended to them each step of the way. At the end of April I got ambitious and asked Jordan to help me prepare a flower bed. I was now able to sit for even longer periods so I pulled a stool up to the spot in the yard where we would be working. And the bending took some recovering but it got easier as a week’s went on. The flower bed was simple and nothing over the top but that sweet 4 year old and I rocked it out in about two phases over 2 weeks with help from his brothers. We also did some big planters for the patio. Then Dylan built us a beautiful outdoor couch. So, now…I see my healing in a very tangible way and it almost makes me cry every single time I sit out here. Even on the days when the boys are here and one brother kicks another and someone steals a toy and that makes me chuckle in my heart. I truly missed everything about raising my boys for too long. And man was that rough to not be the type A Mom I had been for so long but, I could not have asked for a better outcome. Now they have amazing relationships with my family and Dylan’s. Is it still hard? Absolutely! Do I have hope that the Lord is and will continue to restore everything? Yes! It’s been a crazy ride but I am so grateful for all the good coming out of it. Still more healing to go. Still a couple unresolved health issues that are complicating things. BUT – Lots of hope that we will get through this with the joy of the Lord as our strength! God Bless! Have a wonderful day friends and family!!! And thank you for all your prayers and love for our family!”

So,Why Wasn’t There a 1 Year Update?

The further I got into reading this post, the emotions began to flood in because I began to remember why there wasn’t a 12 month post. Within days of this post my progress came to a hault as I began having new and or worsening symptoms. I started losing my balance and also falling. I also started experiencing changes to my vision including waviness, blurry and or double vision, depth perception issues, and black and white spots in my feild of vision. Also, all the improvements to my dropped foot reversed and the overall pain levels in my body became more unbearable again. I had to take a beak from the driving that I had worked so hard to regain. To this day I have still not regained the progress I made prior to the one year post op decline. The next 2 years that followed were the darkest of my healing journey because no one knew what was going on until closer to 3 years post op.

I just choose to believe God has a plan and a purpose

I have still yet to give up or lose hope. That doesn’t mean I am immune from fears that may creep in sometimes. How is it possible to not give up hope? Why is that so important? Not giving up hope doesn’t make me a better Christian or a better person. Hope and God’s Grace are simply how I survive. I have found that the dark times have been the most intimate with Jesus. As I have seeked I have continually found. I am so grateful for the breadcrumb trail of scriptures the Lord has planted in my heart along this journey. It seems He always plants just the right one, unknowingly at just the right time. I am not more special than anyone else, there is nothing diffrent about me that makes me invincible to all the trials that come. I just choose to believe God has a plan and a purpose! It has been an unexpected journey to see where He has been leading me. I thought I knew how my healing would unfold. That is definitely not how it turned out in my case. Thankfully, we don’t have to know all the details in order for God’s perect will to unfold. Thankfully, Jesus leads us beside still waters and calms the storms, each and every step of the way. Not because of who we are but because of whose we are. That is how I never give up hope. I never forget whose I am. I am loved. Please don’t ever forget you are loved too!

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Why I am Creating This Blog?

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